Spring 2016 | Issue 41

Hellpiing ostomates siince 1967

Special Feature: Holidays & Travel including • Hints & Tips for travellers • Holiday Insurance Also • Parastomal hernias • Two nurses with stomas

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FROM THE EDITORIAL TEAM EDITORIAL TEAM S e F Editor e R E Colostomate/Helpline Volunteer p E Rosemary Brierley a g la e p not actual size Assistant Editor, Trustee, 5 e Colostomate & Volunteer 9 l o Sarah Squire fo f r fe Colostomate d r & Helpline Volunteer e Jackie Dudley ta il Trustee, s. Colostomate & Helpline Volunteer Ian Jackson Stoma Care Nurse Advisor Julie Rust RGN, Dip, N MSc General Manager Susan Hale Products & Services Officer dear READERS Arvind Anand

If you attended the Colostomy Association Holidays and travel are the special topic for Open Day last July you will remember the this spring issue of Tidings. Hopefully this excellent presentation on parastomal will persuade those of you that have not hernias by our president Ian Daniels stayed away from home since your stoma FRCS. surgery that travel with a stoma is not only possible but can be as enjoyable as Following on from this, we are delighted to holidays in the past. Even though it is now be able to include in this issue of Tidings an almost 25 years ago I can still remember article on this common complication of how apprehensive I felt before I went to stoma surgery. As well as highlighting the stay away for the first time after my stoma need for more research into the prevention surgery. The answer for me was to take a of parastomal hernias and the most short break close to home to begin with How to contact Tidings effective way to surgically repair them, Mr then venture further afield as my By letter write to: Daniels emphasises that the decision to confidence increased. surgically repair a hernia isn’t taken lightly. The Editorial Team For those with mild or minor symptoms Planning ahead is also important. Peter Colostomy Association Martin answers questions about travel Enterprise House, 95 London Street conservative management is often insurance that we frequently receive on the Reading RG1 4QA recommended. Therefore, in the next issue we plan to include an article from our helpline from ostomates preparing to travel By telephone: stoma care nurse advisor Julie Rust and her abroad. Sarah Squire passes on hints and 0118 939 1537 colleague Simekuhle Ndlovu explaining tips collected from Colostomy Association Via e-mail: volunteers, Tidings readers and Facebook [email protected] how a different appliance or support garment can often reduce the problems members. This includes tips for irrigators on Advertising Enquiries: associated with a hernia and improve her regular irrigation page as well advice on For a media pack and advertising rates. quality of life. going through airport security and Contact: Arvind Anand reassurance for those concerned about flying Telephone : Many years of training and experience for the first time after their stoma surgery. A 0118 918 0500 equip stoma care nurses with the reader writes about the plans she made E-mail: knowledge to advise and care for people before her first cruise and concludes that [email protected] with stomas. Many will, however, be the cruising is an ideal way for an ostomate to first to admit that they don’t know what it see the world. Maybe, however, you prefer to Tidings Magazine: feels like to live and cope every day with a The views expressed by the contributors are not stay in the UK; David Ford, one of Colostomy necessarily those of the Colostomy Association. Great stoma. In this issue we hear from two Association’s volunteers in Wales, describes care has been taken to ensure accuracy, but the nurses who do. You may remember three some of the interesting places in Britain he Colostomy Association cannot accept responsibility for errors or omissions. years ago we included Molly’s story in has visited in his campervan. Tidings about how she was diagnosed with Disclaimer: So don’t let having a stoma stop you getting The display, description or demonstration of products Crohn’s disease at the age of 13 and and services or the inclusion of advertisements, inserts subsequently had a colostomy; she now away to destinations either in this country and samples within Tidings Magazine does not or abroad. Just pack your bags and off you constitute an endorsement or recommendation of tells us how she recently qualified as these products and services by the Colostomy paediatric nurse. Alison Horner on the other go…and when you get back do write and Association. hand writes about her career in nursing at let other readers know how you got on. ©Copyright 2016 Colostomy Association. All rights St Mark’s and on colorectal wards in other Have a great time reserved. No part of this publication may be reproduced, stored in a retrieval system, or hospitals. She says: “Much of what I have transmitted, in any form or by any means, electronic, been through has allowed me to truly Rosemary Brierley mechanical, photocopying, recording or otherwise, empathise with my patients.” Her story ends on behalf of The Tidings Editorial Team except as permitted by the UK Copyright, Designs and Patents Act 1988, without the prior written permission as she flies off on holiday for the first time Email: of the publisher. All marks acknowledged. with a stoma. [email protected] | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 3 D D DD DD DD D

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)9FIDHNCKO+(O.NHGEN8DGLEO*LEO -HGL=@O!ELBDFGH 777>?KM:=KBNFMI>FL>D: TIDINGS CONTENTS How to get in touch with the inside this issue Colostomy all your regulars & special features 8 page Association ure Updates Focus on... feat The Association represents the interests of colostomates and other ostomates. We 8 Colostomy Day 2016 provide support, reassurance and practical Holidays & Travel information to anyone who has or is about 19 Fundraising 32 Kevin Young to have a Colostomy. A thank you for your generous Winner of this year’s CA donations and fundraisers How to become a member of the calendar photo competition Colostomy Association 28 New products Keep up to date with the 33 Cruising Simply contact us by post: latest products and services is so easy for ostomates Colostomy Association Enterprise House, 95 London Street 29/50 34 Wherever we park the Reading RG1 4QA 41 CA News van is our home David Ford By telephone: Sue Hale reports from General Enquires: 0118 939 1537 Head Office 35 Tips for travelling Stoma care queries only: when you have a Freephone Helpline: 0800 328 4257 From Healthcare stoma Sarah Squire By E-mail: Professionals [email protected] 36 Don’t forget your 9 Hernias, Hernias, travel certificate Find us on FACEBOOK: Hernias and Hernia Support 37 Living Life to the Full Ian Daniels FRCP, CA President Crisi Taylor 52 Dear Nurse 38 Your travel insurance Join our ‘closed’ group today simply Julie Rust answers your letters questions answered put Colostomy Association into your and e-mails Peter Martin FACEBOOK search bar, click on Group and click on ‘Ask to join’ you will be Support assured of a warm welcome! Living with a Stoma Visit us and register at: 27 Stoma Aid www.colostomyassociation.org.uk 23 Irrigation How the scheme is helping Sarah Squire passes on ostomates in Moldova Don’t delay travel tips 47 JOSH Donate Online today! Jennifer & Laura There are NOW two ways to donate 39 From a Carer’s online Perspective – 2 sisters, 0 colons Mack shares their holiday 1 experiences 49 The Facebook Group Helping each other 43 From One Ostomate to Another 51 The Breakaway Three CA volunteers answer Foundation readers’ questions about sport 54 Readers’ Writes Visit the Colostomy Association website Your letters and e-mails and simply click on the donate panel on the home page. Real Lives 61 A Local Group Coventry Stoma Support 2 7 From Patient to Nurse Molly qualifies as a paediatric Group nurse Visit the Just Giving home page you will see 64 List of local a search panel ‘Find a Charity’ type in 12 From Nurse to Patient support Colostomy Association. Alison Horner groups

The Colostomy Association is a charitable company limited by guarantee (Registered Charity No: 1113471).

| WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | WINTER 2016 | 5 A Hollister Technology

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From Patient rse to Nu

tense my whole body through lectures in the hope I wouldn’t leak, before scuttling home again. This had to stop. After various hospital visits and exploratory procedures I returned to see the Professor to see what else he would try. Out of nowhere he said that realistically the next step was to form a stoma. He explained what a stoma was with little empathy but I think I zoned out – I was so shocked by this suggestion that I was silent It is tough to choose the right starting the whole way home. Having a stoma had I am now 23. A lot has happened in the four point for this story of ‘my life with a never crossed my mind. years since I had Neville. I had to have a stoma’. I suppose I should rewind the further bowel resection last year due to We got a second opinion. This consultant clock and begin from when I was was amazing and explained the options. He numerous bowel obstructions – for four diagnosed with Crohn’s Disease in 2004. explained that having a stoma was possibly months I was on a liquid –only diet. I was in At age 12, I was as thin –as –a–stick, the best idea for me. my final year at University and I had to put seriously unwell and malnourished. my degree on hold for several months In August 2011, I said ‘yes’ to having a Therefore it comes as no surprise that I was recovery time. I had to continue my degree permanent colostomy. Walking out of the admitted to hospital for 8 weeks (my first whilst all my friends had graduated. It was hospital after making that decision, I felt tough and I really didn’t think I would finish of many admissions). At this stage in my life terrified but determined that it was time to it. But in December 2015 I completed my I was new to understanding Crohn’s live the life I deserved. disease. I was also battling with M.E. – final placement and I am now a nurse! Due although looking back, I believe M.E. had I had a meeting with the wonderful stoma to the nature of Crohn’s I know it can been masking a lot of the symptoms of nurse team before the operation to be reappear at any time but all I can hope is Crohn’s. marked up and to see the bags I would that it allows me some good health for the have to use. Afterwards I burst into tears. I start of my career. I missed 4 years of school and no –one think that I had been living in a bit of a believed I would return to my original naïve bubble about life with a stoma and Neville is with me for life. Luckily I love him year –group once I was well enough to hadn’t realised how major the surgery was (most days). I do have tough days with him attend classes again aged 15. But I proved going to be. though where he ‘plays up’ but overall he them wrong and I sat my GCSEs with my has changed my life for the better and given class; sure I took a reduced number but In October 2011, at the age of 19 my stoma me a chance to have a future. I would never was formed. Humour definitely helped me who needs 12 GCSEs these days? have been able to go to University without through tough times after the operation – him. I would never have dreamt that I However it was during this time that it is a long recovery process. I named my would qualify as a Paediatric Nurse without another problem emerged. I was stoma Neville! No idea where the name him. I would not have participated in a experiencing what can only be described as came from but it helped so much and now ‘leaking’. My Crohn’s was under control but all my family and friends refer to my stoma sky –dive without him. I would not have the damage it had done to my colon, as Neville. climbed Mount Snowdon without him. I rectum and anus left scarring which caused could not have stood or walked any I chose to irrigate which has been brilliant these life –restricting and embarrassing distance before I had him. Just the simple in giving me a little bit more control over symptoms such as leaking and a constant act of taking my dog for a walk is a real when Neville will be ‘active’ – although he urge to go to the loo. privilege. still rebels and does his own thing at times! Looking back I have no idea how I I also decorate my bags to brighten –up a Quite a lot has happened in my 23 years! completed my ‘A’ levels. I would dash from bag change – plus it looks really colourful Who knows what adventures Neville and I the car to the loo before class and then when I’m wearing a bikini. will embark on in the future? n | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 7 CA NEWS FROM THE OFFICE Get ready for

The Colostomy Association Colostomy Day is a national awareness day which takes place on the first Saturday of STAY SILENT each October to help tackle some of the is calling on ostomates, issues faced by people in the UK who live with a stoma. carers, family members, The theme for Colostomy Day 2016 is Fight the Poo Taboo and we’d like lots of people businesses and the general to get involved. It is estimated that almost 1 in every 500 people in the UK currently live with a stoma but it still remains a public to help us fight the little –understood condition to the general public. poo taboo this October by To help tackle public perceptions of having a stoma we are asking ostomates across the getting involved with UK to speak out or go silent for Colostomy Day. Colostomy Day 2016. MAKE SOME NOISE Alternatively, perhaps you could go silent for the day to highlight the difficulty many ostomates face talking about their condition. You could do a sponsored silence, hold a silent disco or even go silent on social media for the day with an explanation about why you’re doing this. The Colostomy Association is committed to improving public perceptions about people living with a stoma. Colostomy Day is a fantastic way not only to raise awareness of the issues faced by people living with a stoma but to have some fun as well. Speaking about Colostomy Day, the Colostomy Association’s Marketing Communications Officer – Niall Norbury – said: “In recent years we have started to see Grab people’s attention by making as much a positive change in the attitudes towards noise as possible about life with a stoma on people living with a stoma but we still have If you’d like to get involved with Colostomy Day. Help tackle the poo taboo a long way to go. Colostomy Day 2016 then please by speaking out or being as loud as you “Colostomy Day is a great opportunity for request a free inspirational pack giving can. the stoma community to challenge negative more information about how to make perceptions and attitudes. We’re calling on this a special event via 0118 939 1537 Possible activities include wearing fancy patients, carers, family members, or [email protected] dress or loud clothing, shouting out on social media or making some noise in manufacturers, businesses and other Please help us make this year’s public. charities to get involved and fight the poo Colostomy Day even bigger and better taboo.” n than the last and look out for further details in the July edition of Tidings. Come on everyone, let’s go for it and get 1 October 2016 in your diary!

8 | TIDINGS | SPRING 2016 | 24 HOUR| HELPLINE: 0800 328 4257 FROM HEALTHCARE PROFESSIONALS HERNIA – IAN DANIELS Hernias, Hernias, Hernias and

FRCS(Ed) l Smart PhD, Nei n ltant Surgeo Hernia Ian u Cons Daniels FRCS or Lecturer Co & Seni nsultant Surg ter Roya eon, versity of Exe l Devon & Ex Uni eter Hospital & Exete Support r Medical Ltd

The issue of parastomal hernias has appliance and the surface of the body to abdomen, but also the continuous gained recent focus in the minds of the which it is applied. We do not need to contracting and relaxing of the abdominal professions treating abdomino –pelvic remind ostomates of the concerns of wall muscles around it. disease. Whilst this article is likely to be pancaking, appliance security, leakage, etc, read mainly by colostomates, much of but the factors that impact on this are Causes what we discuss is as applicable to multifactorial. urostomates and ileostomates. Different factors can affect the risk of We talk about parastomal hernias, and we developing a parastomal hernia. Patient see bulges on the abdominal wall. But what One of the current health hot topics and factors include advanced age, wound do we mean? And how do we assess it? To which numerous organisations are focusing infection and obesity. The older we get, the highlight many of the issues we’ll use on is the Survivorship Agenda. This was thinner and weaker the abdominal wall famous quotes: originally coined by Macmillan Cancer muscles are and therefore hindered in Foundation to address the issues of patients “The better is the enemy of the good” providing adequate support for the stoma. who had survived (beyond) their disease or Professor Bill Heald, OBE, MChir, Conditions that increase the pressure in the were living with their disease. Much of the FRCS, Surgeon Basingstoke abdomen such as persistent coughing (as focus is on a patients’ quality of life, seen in patients with Chronic Obstructive traditionally something not formally As surgeons, the temptation when Pulmonary Disease – COPD), or jobs assessed as compared to quantity of life, ie assessing patents is that we can make them involving heavy lifting can also increase the how long a patient has survived and for better, but to contrast this if someone is risk of developing a parastomal hernia. already good, lives with their prominent which outcome is measured. Other factors such as nutritional status, the stoma, but functions well, perhaps we can use of steroids or other medication that Many clinicians, nurses and patients have do better, but we have enormous potential suppress the immune system can influence questioned this focus on quality of life, and to do worse! But is it really a hernia, or how well tissues heal after the formation of much of the (cancer) follow up is focused perhaps more importantly, what is a hernia? on being disease –free, not symptom free. a stoma. However, much of the risk is For many, the reassurance that their cancer Parastomal hernias are the most frequently probably in our own genetics…some is behind them is tempered by the feeling occurring problem seen following the people are more stretchy than others! formation of a stoma. It can affect patients’ of having to live with the consequences of Technical factors that may increase the risk body image as well as their self –confidence. the disease; a stoma, a hernia, reduced of parastomal hernia formation include They are more commonly seen following quality of life, limitations on work, etc, whether the stomas was formed as an colostomies in comparison to ileostomies especially as the risks of recurrence lessen emergency, whether it was done open or and this can be due to a number of reasons. with time. Indeed many patients, via key –hole surgery or whether ostomy Many ileostomies are temporary and have particularly those with a ‘benign disease’ formation was part of another procedure. a shorter duration of follow up compared such as diverticulitis, are only followed up Keyhole surgery is reported to have a lower to colostomies. We must recognise that in the early months following their surgery risk of causing a parastomal hernia unlike other types of incisional hernia by a surgeon, much of the remainder of compared to open surgery, however, long where there is a weakness in the wall their life it is by their GP, stoma nurses term follow up is awaited. Surgical where two edges have been brought where available, or just getting on with it. technique can influence parastomal hernia together, a stoma creates a hole in the occurrence, as can the diameter of the hole For the ostomate there are a multitude of abdominal wall that is permanent. The hole in the abdominal wall. issues that may impinge on their quality of in the abdominal wall remains and has the life based around the interaction of the pressure of not only the other organs in the CONTINUED ON PAGE 11, COLUMN 1 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 9 With a superior formulation and now 360º application who cares which way is up?!

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FROM HEALTHCARE PROFESSIONALS HERNIA – IAN DANIELS Hernias, Hernias, Hernias and Hernia Support CONTINUED FROM PAGE 9, COLUMN 3 usually means no one knows what’s best! “An ounce of prevention is worth a Formation of stomas It is easy to think that fancy materials and pound of cure” The technique of creating a stoma is one keyhole surgery are the panacea for all ails, Benjamin Franklin, USA poorly taught, there is little standardisation of yet an operation poorly performed, for the technique and the use of prophylactic mesh wrong indication and lack of appreciation Current research – mesh etc of the potential complication can lead to is currently the subject of much debate. A mesh can be placed at the time of ostomy later complications more difficult to construction and this has been associated Problems with manage, an unhappy patient and a more with a lower rate of parastomal hernia complex situation. Sometimes though, the parastomal hernias formation. Much of the recent research is stoma causes multiple problems, but where A parastomal hernia can present with a about the use of mesh placement, type of there are additional hernias, skin changes bulge around the stoma site and can also mesh to prevent, or reduce the incidence of and a large aperture…then surgeons cause pain, abdominal discomfort, back complications and hernia formation. reconstruct everything. Known as the Buy pain and intermittent cramping. More Similarly as we have seen with managing One Get One Free (BOGOF) see Figure 2. serious complications include a bowel complex abdominal wall hernias, lifestyle To manage a problem like this, it’s about obstruction and/or strangulation of the modifications can go a long way to managing the whole abdomen…and the hernia, where the bowel gets stuck in the improving outcome following surgery…In whole patient. hernia and can’t go back in. This can be Exeter, “Smokers are Terrorists” and we potentially life –threatening and requires won’t offer hernia surgery, whilst patients immediate medical attention. For people Stoma care still smoke…and there is a mountain of that only have mild or minor symptoms, we data to prove why not!!! “Do no harm” recommend conservative management in Hippocratic Oath the form of hernia belts or appliances. This Quality of Life is mainly to improve patient comfort and When faced with a patient with a hernia or ostomy functioning. More severe symptoms other complication, surgery should be the However, when it comes down to it, it is about quality of life. What do we mean by might indicate the need for a surgical repair, last thing on the mind of the surgeon, a that for an ostomate and how do we although this decision isn’t taken lightly as combined review with a stoma nurse, a measure it? Well the simple answer is that there is a high risk of hernia recurrence. It new appliance, a change of support etc, is we don’t currently measure whether a is generally reserved for people who have the first port of call to assess whether this person is living successfully and chronic symptoms that impact on quality of can improve the interaction. Similarly an independently after surgery. But there is life. However, just like every other form of understanding of the symptoms, for hope on the horizon. The Exeter Surgical hernia, appropriate assessment, lifestyle example, the night working stoma, Health Services Research Unit (HESRU) and modifications and occasionally abdominal obstructive symptoms etc can aid in the recontouring should be considered prior to Bristol Clinical Trials unit have been management…ask the right questions! awarded a grant of over £1m by the surgery. I suspect few patients undergo a CT Patients that do not have an indication for scan, face –down with their stoma in a National Institute of Health Research to surgical repair can be managed with a donut to truly assess the hernia, and little develop these tools and to look at every stoma belt, which is designed to provide consideration is given to the dynamics of aspect from making stomas, to meshes, to stability around the stoma site and to the abdominal wall and stoma placement. measuring problems from them. There is minimise the visible ‘bulge’. The main aim much to do…and your help is needed. Surgery of a stoma belt is to help fix the stoma Read more about my involvement with appliance in place and to reduce the “A fool with a tool, is still a fool” HESRU at www.hesru.org shearing and therefore, reduce Brendan Moran, Surgeon complications such as leaking. It does not Ian Daniels FRCS Basingstoke reduce the hernia. An appropriately sized Like all operations where a large number of stoma belt (by an stoma nurse) will result procedures have been described, this in very few complications.

Figure 2: The BOGOF Procedure. In this example trying to treat the stomal hernia is only part of the process. Weight loss, increased fitness, lifestyle changes, repairing all the hernias together, and then a “tummy tuck” allow the creation of a new stoma on a flat surface. Figure 1: This diagram shows the difference in scanning a patient on their back (figure A) compared to their tummy (figure B) to Giving someone a renewed outlook on life… demonstrate the hernia. The tummy is relaxed in one and then the hernia becomes apparent when prone. ..but this is not a simple fix!

| WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 11 REAL LIVES ALISON HORNER

From Nu ie to Pat

to a whole other level. There were times when I wished I didn’t know so much, times when I wished I could switch my ‘working’ brain off. I don’t know what the doctors and nurses expected, if anything, from me, but I was determined to be a ‘good’ patient and help myself as much as possible. Perhaps, in hindsight, I took this too far and turned down offers of help when I should have just said “yes please”! I became ill in July 2014 developing a familiar tummy pain. The previous year I had been diagnosed and investigated for diverticulitis. Surgery had been discussed but it was felt, at least for the time being, that it could be managed medically. This turned out to be my fifth attack in one year and went to a whole different level. By lunch time the next day I was seriously unwell. I had never felt so ill, I don in 1988 Hospital, Lon had a rigor, was vomiting and feverish and at St Mark’s or staff nurse Alison, a seni the pain in my tummy was horrendous. Quite frankly I was terrified. It was like there was a mini version of me sitting on each My first encounter with a stoma was aged back to work at St Mark’s, first as a staff shoulder. One was Patient Alison, the other 15 when my Mum had emergency nurse on one of the wards, then into Nurse Alison. Patient Alison was saying: “I surgery. theatres again. I then returned to work on feel awful, scared, so much pain, something the wards as a senior staff nurse and I saw Then in 2011 my Dad, aged 75, suffered a must be really wrong”. Nurse Alison was all sorts of different reactions from patients perforated bowel from diverticulitis and evaluating all the signs and symptoms and having a stoma, some of which stay with ended up with a temporary ileostomy. coming up with a diagnosis! I understood me today. Although many years have passed between only too well the results of all the my Mum and Dad’s surgeries, I’ve been up Eight years later I was a young mum living examinations and observations when I was close and personal as a family member. in Portsmouth. I returned to working in admitted into hospital by the GP. Definitely a family with dodgy guts! colo –rectal theatres and was surprised how I was treated medically again, IV antibiotics much I remembered from my St Mark’s When I began my nurse training in 1983 I and fluids and had CT and ultrasound days! Eventually I went to work in the took what I had learnt from my Mum’s scans. I managed to persuade the Intensive Care Unit and would occasionally experience with me to help my patients. consultant to let me go home a few days look after bowel surgery patients there too. During my training at St Bartholomew’s later so that I could attend my son’s Hospital in London I was sent to St Mark’s At some stage in our lives all those who graduation in Leeds. Surgery was now discussed as this episode was a ‘game Hospital for an eight week theatre work in the health environment will find changer’ and it was agreed to admit me in placement. Locally, the taxi driver’s referred themselves on the receiving, rather than four to six weeks’ time. I knew surgery to it as the ‘bum hospital’! As students we giving, end. No one could have prepared would involve a stoma of some sort and were actively encouraged to ‘scrub’ and me for what happened when I became ill tried to start mentally preparing myself. start taking cases under supervision. The and there were times when it felt quite surgeons were brilliant, teaching and surreal. I found, with my relatively in –depth Despite taking antibiotics I was spiking supporting us. As soon as I qualified I went knowledge, that it just increased my fears fevers and I felt so unwell. I was hardly 12 | TIDINGS | SPRING 2016 | 24 HOUR HELPLINE: 0800 328 4257 REAL LIVES ALISON HORNER urse ent

eating anything as it just made my abdominal pain worse, and I was not passing anything but mucus from my bottom. The weight started to fall off me. Even though I was admitted as an emergency I had to wait four days for my operation. I tried to rationalise why someone else would need theatre ahead of me – perhaps there had been a major accident. My surgeon came to apologise for not being able to do the surgery that day and said they would do their best to treat me the next day. I started to think I was going to die before they got to me. One lady in my ward beckoned me over and asked me what I was having done. In an instant she had whipped up her nightie and was showing me her urostomy and large, long –ago healed laparotomy scar. “See dear that’s all it is, nothing to be frightened of.” I thanked her for her kindness and went back to my bed. Alison three months after The stoma nurse had come to mark me up her surgery the day before surgery and asked me to After the operation I spent two days in responded by saying: “You are welcome”, explain to her what I was having done to Surgical High Care and was then just as I had done to relatives when I check my understanding. After a few words transferred to the ward. I tried to do all the worked in Intensive Care. What struck me she stopped me and said: “what do you things I knew I should do like taking then, and still now, is the intensity of the do”? I told her and discussed my fears. As I regular deep breaths and moving my legs. gratitude I felt towards Mr Pares. For us, we lay in the bath, careful not to wash off those Getting out of bed some 48 hours after I really are just doing our job and glad to be black spots, one each side of my tummy, I had gone to theatre was one of the hardest able to do it and make a difference, but it knew I would never be the same again. things I’ve ever had to do. My legs were is quite another thing when experienced like jelly and my wound felt so painful and I had gone into great detail with my from the other side. tight, I sobbed tears as I was helped into a surgeon about the procedure before signing chair. Yet, extraordinarily, I gave career Changing my colostomy pouch for the first the consent form, even requesting a certain advice to a student who wanted to aspire time was utterly exhausting; I found it type of wound closure! I was beyond to what I do now! My working brain just difficult to concentrate and my hands were terrified knowing what my body was about never switched off! shaking. I had little stamina due to the to go through but knew it was that or die. prolonged sepsis I’d suffered before My surgeon reassured me that there was a My surgeon (the amazing Mr David Pares) surgery and I was quite anaemic. I tried to good team to take care of me, and I thought told me that they had been unable to join be the ‘good’ patient but I wanted to tell “yes he’s right. I was part of that team me up as everything was so swollen, and the stoma nurse I’d had enough and once”. The whole situation remained a bit that they had to remove some of my couldn’t she see that? surreal and I dearly wished it wasn’t rectum as well. He said I was one of his happening to me. The outcome in terms of ‘most suffering patients’ and remarked that The lack of privacy in a ward is grim. There type of stoma and procedure was uncertain I must have been in so much pain. I was is no real confidentiality as we all hear as it was not crystal clear what the situation very emotional and gripped onto his hand about each other’s situation through the would be until they saw inside me. and thanked him for saving my life. He CONTINUED ON PAGE 15, COLUMN 1 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 13 NEW Aura Flushable Now doubledouble the confi dence

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From REAL LIVES ALISON HORNER Nurse ient to Pat CONTINUED FROM PAGE 13, COLUMN 3 bit to allow it to be packed. I know the the decision I’d made to keep ‘Sid’, my curtains; the trouble for me was that it all system yet I felt I had to battle for stoma, as the outcome for reversal is too meant something. Determined to get everything. How on earth do others get on? uncertain for me. On Christmas Eve I home, I was discharged four and a half days I took charge of doing the dressing myself worked my last day whilst I decide what to after my surgery. Looking back I don’t know to keep some control of my life which was do next. how I did it. I struggled so badly to change becoming one long round of doctor’s Much of what I have been through has the stoma pouch and admonished myself. appointments, hospital appointments and allowed me to truly empathise with my I’d done it for many patients yet I couldn’t prescriptions. patients, and with a few I have shared my manage it for myself. My daughter sat I regained my strength and slowly but surely story in an effort to help them. I don’t patiently with me and encouraged me as I built up my activity by walking and walking broadcast what has happened to me but I gradually got the hang of it. and walking some more! After three months am happy to talk about it if asked. Regarding Then I got a wound abscess which burst I returned to my job, as a nurse practitioner ‘Sid’ I often get told “well you’d never know” and terrified the life out of me. I thought my in a GP surgery, on a phased return and was like having a stoma would be blatantly whole wound was breaking down, but of completely exhausted. By nature I am a obvious! I have tried not to let having a course it wasn’t. Nature had done what it workaholic and found it hard to pace myself, stoma prevent me from doing anything I does best and drained all the pus from the but there was a part of me that wanted to want to do. Since my op I have returned to abscess. However, because the drainage return to ‘normal’ as soon as possible, and running, got on my bike, and I flew to hole was so tiny it kept healing over and the that meant work. Then one day, quite Australia in November, though I have to abscess reformed each time. It took me recently, I realised that I had not healed admit trying to empty Sid’s bag at 38,000 three weeks of visiting GPs to finally get psychologically. I needed some time out to feet in turbulence was a little stressful! what I needed – the wound opened up a accept what had happened to me, including Alison Horner

National Key Scheme (NKS) Radar Key Photo ID Card The Colostomy Association and Photo Identity Card photo ID card is proving very To obtain a key or a photo identity card please complete popular as it can be useful if the form and declaration. Make your cheque payable to challenged when entering or the CA Ltd. Return all required items to: Enterprise House, exiting accessible toilet facilities. 95 London Street, Reading, Berkshire RG1 4QA If you would like to apply for a Photo ID card, please complete (If you have any queries please contact the admin team at the Colostomy Association office via the following methods: the form opposite and return it to Telephone: 0118 939 1537 or Email: [email protected]) the Colostomy Association for processing with the various National Key Scheme - Key and photo ID card purchase u o

enclosures listed below: y

Title: Please tick as appropriate: k n a h t

• A copy of your prescription - Name: m

I would like to receive a key for a charge of r

or delivery note as proof of o f

s

£3.50 (including postage and packing). i h t

eligibility Address: n o

s s

I would also like to receive a photo ID card e

• Passport photo x 1 r d

for a charge of £6.50 (including postage d a

e

and packing) and enclose a passport h • Payment – cheque t Postcode: o t

photograph. n r u t e

Tel: r Note: Payment can be taken over d

NOTE: Please send a copy of your n a the telephone if preferred. e

Email: prescription/recent delivery note as n i l

proof of eligibility and make the d e t t

cheque payable to: CA Ltd. o Alternatively, the form can be d

DECLARATION: I declare that the individual named above is e h t

downloaded from our website: chronically sick, has a disabling condition or has had a bowel g n o www.colostomyassociation.org.uk l a

or bladder diversion that necessitates the use of disabled t u c

toilet facilities. The key is for the personal use of the above e s a

named and their designated carer only. e

Please allow 10-14 days for l P delivery – thank you Signature of self or carer: Date: / /2016

| WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | WINTER 2016 | 15 VOTE FOR YOUR 2016 STOMAHERO.

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ConvaTec is there for every person with a stoma Association, together with an Amcare™ Group throughout his or her entire journey and we Stoma Nurse and an independent Stoma Nurse. recognise the crucial role of the Stoma Nurse Patients are invited to submit nominations via throughout that process. The Stomahero Award post and emails, all Stoma Nurses with more has been developed to acknowledge the patient than one nomination are shortlisted to the care and support delivered by Stoma Nurses judging panel. across the country and to give patients the opportunity to nominate and say a huge thank The winner receives a £3,000 educational you to their nurse for the continued support grant which can be redeemed against a stoma before, during and after surgery. education course or an educational conference event, to help support the development of their The Stomahero Award Nominations are judged stoma department and their own personal career by three patient associations, the Ileostomy development. Association, Colostomy Association, Urostomy

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N omin Nominating your Stoma Nurse couldn’t be c atio losin n g da easier, simply visit www.stomahero.co.uk 1st A te ugu to submit your online nomination and tell 2 st 016 us why they deserve to be the next winner. #stomahero2016

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Win up to £25,000 with Unity Prizes £25,000 £1,000 £25 £5 Unity is a lottery with a difference. We receive income 6 digits 5 digits 4 digits 3 digits 1 4

1 directly from the number of lottery players we recruit, 0 0

0 so we need your support. For every £1 entry – 50p

T 1. Your details (please print in block capitals) 2. Payment Frequency

O comes directly to the Colostomy Association. Title: First Name: How many entries would you like each week? L

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m How it works Monthly/£4.34 u Address: How often do you

n Direct Debit only

n For just £1 per week you will be allocated a six digit want to pay? x o

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r Unity t lottery number. You can purchase more than one Postcode: s payment i Every 26 wks/£26 g

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| are selected at random and the prize cheques posted amount in box) Every 52 wks/£52

D.O.B.: If you would like to receive A directly to you, so there is no need for you to claim. correspondence via email, please tick here = Q

4 Email: You must be 16 or over to enter. Total Payable 1

G If you do not wish your name to be publicised if you win, Winners have to match 3, 4, 5 or all 6 digits of the please tick here R

,

g winning number in the correct place in the sequence. n i Banks and Building Societies may not DD15 d 3. Select your Payment method

a accept Direct Debit instructions for some

e types of accounts. R

How to join – three easy steps , Direct Debit t Instruction to your Bank or Building e

e Society to pay by Direct Debit r t Step one –Complete your personal details - so that Please fill in the form and return to Unity S Name and full postal address of your Bank or Building Society.

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o we can contact you if you win. To: The Manager: Bank/Building Society Name(s) of Account Holder(s) d n

o Step two Unity Address: L –Select the number of lottery Branch Sort Code:

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, entries you wish to purchase per week and how often account number e

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p instruction or enclose a cheque. Detach the r Unity Reference: 4 2 1 1 0 2

e Please pay from the account detailed in this instruction t Unity n form, put it into an envelope and return to subject to the safeguards assured by the Direct Debit E

Guarantee. I understand that this instruction may remain with

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n and, if so, details will be passed el to the address shown on the right panel. Bank/Building Society. o i t a

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s Payment by Cheque I enclose a Cheque made payable to Unity (minimum payment £13) o l

o Results & Rules can be checked by visiting C (I confirm I am 16 or over and resident of GB) s i www.unitylottery.co.uk 4. Your consent to Play

y r Surname: Date: e t t

o Or by phoning the Unity winners hotline l For office use only: y Occasionally, Colostomy Association may send you samples t i 0370 055 2291 and information that may be of interest to you. We do not pass on n

U your details but may use them to keep you informed of what else

s is available. If you would prefer not to receive these, please tick i h

t the box.

f o Post this form to: Freepost RLZR-GSYJ-KSZA r Detach the form, put it into an envelope and return e The Unity Lottery t o to Unity to the address shown on the right. Furness Gate m Calls cost no more than calls to Peter Green Way o Furness Business Park r 50p geographic numbers 01 or 02. from every £1 goes to p BARROW-IN-FURNESS They will notify you of your lottery number.

e You must be 16 or over to enter. Unity LA14 2PE h Colostomy Association T

The Unity Lottery, Freepost RLZR - GSYJ - KSZA, Barrow-in-Furness | T: 0370 050 9240 | E: [email protected] Unity is operated by Sterling Management Centre Ltd, registered as an External Lottery Manager by the Gambling Commission under the Gambling Act 2005 – www.gamblingcommission.gov.uk FUNDRAISING WE NEED YOUR HELP

nations We need YOU! Fundraising is an immensely important Do your n sending Whe e source of income for the Colostomy Association as ions pleas donat lude we rely heavily on donations. Help us continue to rget to inc don’t fo . act details provide support to ostomates and their families your cont k you! 24 hours a day, 365 days a year. Than

Fundraising Focus Each time we start to put this article together we’re always pleasantly surprised and proud to see the numbers of people who are giving up their time to raise funds for the Colostomy Association. Young and old, volunteers, medical professionals, people living with a stoma and people without. From sponsored runs to cake sales, every contribution is priceless and very much appreciated.

from Cotgrave near Nottingham raised their Eccles, sausage rolls, homemade soup, plus Shelley’s Party voices for the Colostomy Association in mince pies, brownies, crumbles and December 2015. numerous other goodies! The organisation involved in running an event including contributions from 33 different bakers who offer up numerous treats is difficult enough, but when you’re also faced with some of the worst autumn weather on record descending on Suffolk during the day, the challenges involved were greatly magnified! So, despite being banished to the church In December, Philip Young, representing The congregation of St Peter’s raised £100 porch to avoid being blown away by the the Colostomy Association, visited the by carol singing around the village, while elements, everyone involved contributed Stoma Care Department at Cheltenham the Keyworth Choir raised £400 from their towards a massive £815 being raised. Our Hospital to receive a donation of £700 carols around the streets and performance thanks go to the generosity of the residents from Shelley Smith, a Clinical Nurse in the village square. of Laxfield and to Caroline’s team of Specialist in Stoma Care. dedicated helpers. Five years ago at the age of 42, Shelley was Have your cake and Swim when you’re diagnosed with breast cancer. She had eat it three surgical operations followed by winning chemo/radiotherapy so understands the For the last four years Colostomy effects of neutropenia, fatigue and life after Association volunteer Caroline Emeny Back in October last year eight year old Lucy diagnosis. Shelley is now well and hoping (pictured below with a Facebook Tomas Bennion planned to swim an amazing for continued good health. bear) has held an annual cake stall in her 1,000 metres in support of her grandfather who has a colostomy. He set Lucy a To celebrate her five year mark, Shelley held home village of Laxfield every autumn to help raise funds. challenging target of not only completing a celebratory party at the Cheltenham Lido the swim but raising £400 for the with all donations kindly going to the Colostomy Association. We’re happy to Colostomy Association. Many of Shelley’s report that Lucy passed with flying colours stoma patients have generously donated to on both counts as not only were the 1,000 her fundraising and were surprised by her metres conquered but she more than cancer story. doubled her fundraising target and raised Thank you for the donation received and to an incredible £851.50. Well done Lucy! the nurses in the Stoma team at Cheltenham Hospital for the continued care Margaret’s art attack and support of their patients. Margaret Simister (pictured overleaf) is a well known admin volunteer both in the Carol singing for the office and at the end of a telephone and Colostomy Association has been helping out since 2009. Christmas is always a great time for a sing Yet again, the array of delicious home made In the autumn Margaret generously along and both St Peter’s Church from cakes was absolutely amazing. These volunteered to give even more of her time Dulverton in Somerset and the Keyworth included Christmas cakes and fruit cakes to to raise money for the Colostomy Choir (pictured in the next column, top) lemon drizzles, chocolate, coffee & walnut, CONTINUED ON PAGE 20, COLUMN 1 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 19 FUNDRAISING WE NEED YOUR HELP Fundraising Focus

CONTINUED FROM PAGE 19, COLUMN 3 David (Pictured with Colostomy Association. So on Wednesday 28 October Association President, Ian Daniels) spent Giveacar.co.uk 2015, she used her talent as an the whole of 2015 cultivating his locks for a The Colostomy Association has teamed up accomplished artist and organised a pastel sponsored hair grow. On 8 January this year with giveacar.co.uk in a scheme which can portrait workshop. David finally took the scissors to it and in turn your old car into cash for any UK the process he raised £410 for the charity. They arrange free collection, then Colostomy Association. Many thanks go to either sell your car at auction or scrap it with David and to the Beer Engine Pub whose the proceeds raised going to your charity. regulars helped contribute towards his The UK’s first car donation scheme, target. Giveacar has won several awards and has now supported over 1,000 charities with Special Thanks the money raised from old cars. Using a Every year hundreds of people donate or nationwide network of breakers yards and raise funds for the Colostomy salvage partners, we have handled the Association and while we can’t publicly auction and disposal of over 8,000 vehicles acknowledge everyone we would like to so we know how to raise the best donation say a special thank you to a few other possible whether your car is in perfect people in this edition: condition or not. If you need to get rid of an old car and would like to help the The Fareham Lodge of Instruction v Colostomy Association at the same time kindly donated £250. visit www.giveacar.co.uk or call 020 7736 v Erwash Bowls Club raised £180 from 4242, quot ing Colostomy Association as their annual match, when 48 players your preferred charity. The weekly Art Group at Phyllis Court Club took part in a day that was played in Thanks to Mrs Chandler from Reading who in Henley –on –Thames assembled at great spirits. The members also 10:00am for the first of two sessions on received a talk from C olostomy used the service earlier in the year, the black and white portraits. The aims were Association volunteer To re Norman. Colostomy Association h ave already had a d on ation from giveacar.co.uk explained and Margaret asked for a v The partners and Customers of donation In lieu of a tutor’s fee. She Waitrose branches in Reading and provided two of her own head and shoulder Witney have both been raising fun ds Textgiving portraits of ladies in 1920’s hats and all the for the Colostom y Association and You can now make a donation to the essential art materials to enable the between them r aised £600. Co los tomy Associa tion with a text message! attendees to produce their own artwork.

W hatever mobile network you’re o n, simply

Many of the students who had never used text our unique code CASS01 and an pastels before were quite daunted. Do it for charity ! amount of £4, £5 or £10 to 70070. However, under Margaret's excellent and Donating via text JustTextGiving by very patient teaching, some amazing results Voda fone is free. There is no cost to you for were produced. At the end of the two s ending the text message and sessions Margaret had raised the princely your free allowance or bundle sum of £180.00 and the pictures were will not be affected – the only simply stunning! charge will be the donation

itself. CAS S01 Hair today gone What’s more, 100% of your £ tomorrow The Colost omy Association have teamed text donation (including Gift 10

up with S kyline Ev ent managem ent to offer David Taylor from Newton St Cyres in Aid) will be sent to the potential fundrais e rs the op portunity to Colostomy Association. 7 Devon will be feeling much lighter after 007 take part in a wide range o f ac tivities and 0 having his hair cut off in aid of the The amount you donate events for free, while raising valuable Colostomy Association. will be added to your sponsor ship money to help us continue to mobile phone bill or support people with a stoma t hroughout deducted from your pay as you go the United Kingdom. credit. Ju stTextGiving will send you a link in For the adventurous amongst you who a text message confirming your donation. might have resolved to take up a challenge or do something different in 2016, the GIFT AID EXPLAINED website www.doitforcharity.com has If reading this edition of Tidings has made everything from fun runs to half marathons you consider making a regular or one off and charity cycle rides. donation to the Colostomy Association, To see the fundraising events currently on you may be interested to know how just a offer from skyline and the Colostomy simple tick in a box on the donation form Association just log on to can make your gift reach even more www.doitforcharity.com/colostomyassoci ostomates and at no extra cost to you! ation.aspx CONTINUED ON PAGE 22, COLUMN 1 20 | TIDINGS | SPRING 2016 | 24 HOUR HELPLINE: 0800 328 4257 moisturising and nourishing

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16:09 FUNDRAISING WE NEED YOUR HELP Fundraising Focus

CONTINUED FROM PAGE 20, COLUMN 3 completing one of the donation forms you payments made over the past four years and we will continue to claim until you tell What is Gift Aid? can find in this magazine. You can also sign up if you are donating online through our us otherwise, so long as you are eligible. Gift Aid is a simple way to increase the website; just tick the Gift Aid box on the value of your donation to the Colostomy donation form. If donating by telephone Association. If you pay tax in the UK, the What do I do if my tax status you just need to confirm that you want to Colostomy Association can reclaim the changes or I want to cancel my basic rate tax (25%) on your gift. So, if you make a Gift Aid donation and we will do the declaration? donate £15, it is worth £18.75 to us. rest! To let us know if you stop paying tax or wish to cancel your declaration, please use the Here’s our guide to a simple and What does the Gift Aid enquiry form on our website, write us a straightforward way of making your declaration commit me to? letter, send an email or call us on 0118 939 donation go even further. Nothing! It just ensures that if you choose 1537. to donate to the Colostomy Association, Do I qualify for Gift Aid? we can claim an extra 25% back from the Will making a Gift Aid In order for the Colostomy Association to UK Government. declaration really make that reclaim the tax you have paid on your donations, you must have paid income or much difference? capital gains tax in the UK for each tax year What is a Gift Aid declaration? If you donate £15 a year you may think that (6 April to 5 April) at least equal to the tax A Gift Aid declaration is a statement by an an extra £3.75 to us through Gift Aid isn’t that all the charities which you donate to will individual taxpayer that they would like a really that much of a deal. But what if an reclaim on your gifts for that tax year. You charity to receive the tax paid on their extra one thousand people who were don’t have to be in work to qualify. If you donation back from the UK Government. eligible also didn’t sign the Gift Aid receive a state pension you are also eligible declaration? That means we would be as that is taxed at source. Other taxes such How long does the declaration missing out on an extra £3,750 a year. That’s as VAT and Council Tax do not qualify. last for? enough to provide refresher training for all our helpline volunteers and ensure our To simplify matters for both you and the Freephone helpline can keep operating How do I sign up to Gift Aid? Colostomy Association, the declaration 24 –hours a day for another year. The process is simple – all you have to do wording normally covers present, future is make a Gift Aid declaration when and past donations. We can back –claim That alone should get a tick! n

Legacy donation

A gift in your Will

If you are about to make a Will, or are considering making a change to your current Will, please consider leaving a legacy to the Colostomy Association. Your legacy could secure the Association’s future and provide continued support to all those ‘living with a colostomy’ present and in the future. Colostomy Association, Enterprise House, 95 London Street, Reading, RG1 4QA Registered Charity No: 1113471

22 | TIDINGS | SPRING 2016 | 24 HOUR HELPLINE: 0800 328 4257 LIVING WITH A STOMA IRRIGATION

Irrigation and you

Sarah Squire, Trustee writes: With summer hopefully around the corner some of us may be thinking about a holiday, either abroad or perhaps closer to home to visit friends, or one of the beautiful parts of the UK.

But how does travelling affect irrigation? I thought I would tell you about my experience of irrigation and travelling, and tips I have picked up on the way:

Irrigation can make travelling less of a Alongside our normal stoma supplies, preference so choose the method which worry, certainly on the journey itself. I am irrigators who use a cap might want to pop suits you. a born worrier. I don’t mind travelling and in normal bags and even a few drainables If you are going to stay with friends it may love to go on holiday, but anything out of in case of upset while away. I take a spare be worth mentioning you’ll need use of a routine and my bowel is the thing that irrigation kit, plus more sleeves than I bathroom for a while to irrigate. You may pipes up. would need for the number of days away, feel a little uncomfortable asking it but in case of delays or mishap. I also carry an But irrigation means I am in control so I better to briefly explain so you don’t feel S–hook which is very useful for hanging the have peace of mind that as long as I stick rushed – we all know relaxation is the key water reservoir, and a sticky hook for the to what I know doesn’t upset me (ie don’t to a good irrigation so you don’t want to be occasion of nowhere to hang my S–hook. I drink a bottle of red wine the night before I worrying about the time you spend in the have only needed to use my sticky hook fly), I’m able to travel with confidence. I bathroom. I’ve always found friends have once, in a bathroom in Cape Verde, normally irrigate in the evening as it suits bent over backwards to help and have otherwise the S–hook has served me well. my working day but if I am out and about I appreciated me being upfront as they want will change this to fit with my plans. It is The bathroom was huge with nowhere to my stay to be a happy time. advised to stick to a similar routine when hang my trusty S–hook, but normally there If you are camping then irrigation may be first irrigating but once we get the hang of is a shower curtain rail, door or towel rail more of a challenge. I have friends who it, many of us can shift the schedule to suit which does the job fine. Speak to most irrigate very successfully in their camper van what we are doing. So if I know I am having irrigators and the first thing we do on though, and if you are in a tent you may be a long day of travelling I will either skip the entering a hotel room is check where we able to use the disabled facilities on the evening and irrigate the morning we go, or will hang the hook. But in the eight years I site. Or alternatively you may choose not to if it is going to be an early start and a long have been irrigating I have stayed in many irrigate while away and let the bowel do its day I might irrigate as normal the night many hotels and have always managed. If own thing. You can pick up with irrigation before and stretch my irrigation to miss that you remember, in an earlier edition of once you get home. day and do it the morning after we arrive at Tidings Brian Kirkby also described an easy our destination. to make lightweight telescopic pole which We often get asked about irrigating with the he takes away with him to hang the water water abroad. The simple rule is, if the tap Of course we are all different and some reservoir from. Instructions of how to make water is safe to drink then it is safe to use people only irrigate every other day anyway, it were shown in a follow up article in for irrigation. If in doubt use bottled water. and some can’t stretch it to 36 hours. But I Tidings Spring 2015 if you would like to If you are in a country where it’s the norm tend to look at the journey itinerary and have your own. Some irrigators may use the to drink bottled water it is usually very have a think about what will work best for pump of course, which eliminates the need cheap to buy. If you are in a hotel you could that day for me and make a plan from to hang anything so may be seen as an ask for bottled water to be provided. When there. advantage for travelling, although you need we went to Mexico a few years ago I Before we even leave home though, we to weigh up the extra bulk of the pump emailed the hotel to request extra water be need to think about what we need to take. versus a small gravity kit. It’s all personal CONTINUED ON PAGE 25, COLUMN 1 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 23 Unnevene surfafacec s arouo nd a stot mam cana make lifef with a sts omma pooucu h diffif cult.. HydroFrame® witth Manuka honey flange extensionsn and Hyperseal® witth Maanuukaka hono ey wassherss are desiigned to proviide extra security and prrevent leakks,s, even for probleematic stommas. ToTo thah t security we’vee added theh comfoort of meddical graaded Mannukka hoh neey,y whichh mayy hellp to promoote heaalthyy skiin aroundd the stot mam . LiL vev liffe too the full wiw tht ouru kini dedest stoomama accesssos riess yetet.

Careline: 0800 036 0100 www.clinimed.co.uk with Manuka honey [email protected] with Manuka honey

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Mr/Mrs/Miss/Ms: Initials: Surname: Address:

Postcode:

Tel. No: Email:

I understand that this request will be handled by CliniMed Limited or SecuriCare (Medical) Limited. I would like my details to be kept on file, so that I can be kept up to date with information about relevant new products and services.

Manufactured by Welland®, a CliniMed® Group company. Welland products are distributed in the UK by CliniMed Ltd. Tel: 01628 850100 Fax: 01628 523579 Email:[email protected] or visit www.clinimed.co.uk. For Ireland, contact Fannins N. Ireland: 028907 35581 or Fannins Eire: 0035312 907047. CliniMed Ltd., a company registered in England number 01646927. Registered offi ce: Cavell House, Knaves Beech Way, Loudwater, High Wycombe, Bucks HP10 9QY. CliniMed®, Welland®, Hyperseal® and HydroFrame® are registered trademarks of CliniMed (Holdings) Ltd. ©2014 CliniMed Ltd. PID 548

LIVING WITH A STOMA IRRIGATION CONTINUED FROM PAGE 23, COLUMN 3 and I could relax and irrigate as delivered to the room daily. I admit I was normal. sticky hook supporting an S –hook with water uncomfortable about telling them why so This may all sound very complicated reservoir underneath mentioned a medical reason, but after but it really doesn’t need to be. numerous emails back and forth saying no When I am going away I run I didn’t want sparkling water (!!!), just clean through a quick checklist in my drinking water I finally said I had a head. What time are we going, how colostomy and needed to do a daily bowel long will it take and what are washout. I should’ve just said that at the facilities going to be like when we beginning as they totally understood that get there. It may take a little thought and when I arrived in my room there was a and planning but once that is all line of water bottles on the dressing table sorted hopefully you can forget and a fresh delivery daily. Likewise when about your stoma and enjoy your we went to Cape Verde the year after, I sent travels. Happy irrigating! a simple email, this time making it clear. I did laugh at check in though, as they’d Sarah Squire allocated us a disabled room with a huge bathroom. But every morning a lovely man arrived with my extra water so I was a happy irrigator. When I know I will be using bottled water I take a travel kettle and an extension lead (plus plug adaptor) *. This *Electrical appliances and extension way I can heat a little water and top up cords are not recommended in wet from the bottle to get the right temperature. areas and should be avoided. Others have also suggested putting the Irrigation is a method of colostomy management which involves using specialist bottled water out in the sun to warm up which could work well if you are in a hot equipment to introduce warm water into the bowel via the stoma. The water causes climate. You can see my irrigation set up in muscular contractions (peristalsis) within the bowel which in turn cause expulsion of its Cape Verde in the photo (pictured right) contents. Many Ostomates prefer this method of colostomy management as it gives them Using my S–hook, bottled water, kettle and a sense of control. If you feel you would like to try irrigation you should first contact your extension lead I was all set for a stoma nurse to see if you are a suitable candidate. If you get the go ahead they will then comfortable irrigation. Add a good book arrange a time to teach you. Also have a look at the Colostomy Association website for and some wifi to catch up with Facebook more information on irrigation and how to purchase the Irrigation and you DVD . D

Colostomy Irrigation and You DVD Order Form Colostomy Irrigation and You (Patients)

Colostomy Irrigation and You is an educational DVD aimed at patients, it has been produced by the Colostomy Association to raise awareness about colostomy Irrigation as a method of bowel management. Note: Not all colostomates have the potential to irrigate. It is therefore essential in the first instance to consult your Surgeon/Stoma Care Nurse as they will advise as to your suitability. u

To obtain your single copy of Colostomy Irrigation and You at the special introductory price of o y

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£4.99 (incl postage and packing) simply fill in your details below and return it with your cheque n a h t

made payable to the CA Ltd, to: -

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Colostomy Association, Enterprise House, 95 London Street, Reading, Berkshire RG1 4QA o f

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Colostomy Association, Enterprise House, 95 London Street, Reading, Berkshire RG1 4QA Charity No. 1113471 VAT No. 917079312

| WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 25 Unisex Support Belts & Girdles NEW CORSINEL BELTS FROM

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AVAILABLE ON NHS PRESCRIPTION Suportx o er a FREE nationwide fitting service for all hernia support garments call or visit our website on: 0800 917 9584 www.suportx.co.uk SUPPORT STOMA AID e p o H f o s e c i p s o H f o n o i s s i m r e p d n i k y b d e s U A patient being examined and offered support in Moldova Stoma Aid: “..they used household accessories for their stoma pouches...”

At the beginning of the year, our newest Hospices of Hope has been helping cancer service – Stoma Aid – was launched. patients in Moldova’s capital city, Chisinau, Donations Stoma Aid is an initiative which will help since 2002. At their main centre, Hospice Supplies donated to Stoma Aid will help thousands of people across the world Angelus, over 1,580 stoma patients are in transform the lives of patients in Moldova, who are unable to afford or who cannot desperate need of stoma supplies to help Kosovo and Papua New Guinea. Make sure access suitable stoma supplies. them live a full and active life. your unwanted supplies don’t go to waste Since the launch, we have been and send them to: overwhelmed by the generosity of our “Before patients heard about us,” Hospice Dean Philp supporters (and several manufacturers) Angelus doctor Andrei says: “they used Stoma Aid with boxes of unwanted supplies being household accessories for their stoma c/o Stone Logistics Ltd/PRS Ltd sent to our main warehouse in Bolton to be pouches including unsterile plastic bags sorted and packaged. Lorne Mill and bottles. Even finding places to buy Lorne Street Stoma Aid accepts unused and surplus stoma pouches is impossible and very Bolton supplies in the UK that cannot be returned expensive for patients.” BL4 7LZ to the NHS. These supplies are sorted at our warehouse in Bolton and then distributed However, the launch of Stoma Aid has Stoma Aid cannot accept the following through partner UK charities and helped improve the lives of stoma patients supplies: syringes, out of date items, organisations to ostomates in developing visiting Hospice Angelus. prescribed medication or drugs of any kind. countries across the world. All two –piece pouches must feature both The family of one Hospice Angelus patient, One country where your supplies make a the pouch and the matching flange/base Dumitru, travels over 100km each month real difference is Moldova – where the plate. just to collect his stoma supplies. Writing to Colostomy Association is working with Remember: we must all manage our stoma Stoma Aid via Hospice Angelus, Dumitru Hospices of Hope to change the lives of supplies carefully and not over –order as this wrote: “I wanted to send a sincere thank thousands of patients. could save the NHS thousands of pounds you from the bottom of my heart for Moldova is the most impoverished country each year. Only genuinely unneeded in Europe with 13% of the population living helping me by providing pouches for my supplies should be donated to Stoma Aid on less than £1.60 a day. intestinal stoma. Because of the low as a result of reversal, allergic reaction, pension that I receive, I cannot afford to buy change of stoma shape or loss of a loved In the UK, stoma patients are provided with these myself. Thank you that you exist and one for instance. either without cost or affordable stoma that you help people like me.” supplies. In Moldova patients do not get If you’d like to donate much needed funds pouches supplied to them, let alone the Sadly, cases like Dumitru’s are too common to keep our overseas aid project going aftercare or accessories which help with across the world where poverty and lack of longer term, please send a cheque to the basic hygiene and comfort. If they cannot office, made payable to Stoma Aid. afford to buy pouches they resort to using infrastructure are forcing thousands of supermarket plastic bags or plastic bowls ostomates to use tin cans, crisp bags, bin Please contact the Colostomy Association and are isolated from friends and family. bags and other improvised items. if you require any further information. n | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 27 SHOWCASE STOMA CARE PRODUCTS AND SERVICES Update on stoma care products and services Tidings is always interested to learn about new stoma care products and services from manufacturers and suppliers. If you have found a stoma care product or service beneficial to ‘living with a colostomy’ please let Tidings know . YOUR findings could make ALL the difference to others.

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28 | TIDINGS | SPRING 2016 | 24 HOUR HELPLINE: 0800 328 4257 CA NEWS FROM THE OFFICE News From the Office

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UMN 2 ets D FROM COL e Raffle tick CONTINUE – it couldn’t b ’s 2016 our donation Association s along with y e Colostomy g u Enter th ce of winnin with a chan easier. Each quarter we like to share our latest ffle to be in by Friday 16 ra eed to be in at Christmas. ticket sales n ified by news and this Spring there are plenty of £2,500 All winners not e spending er 2016 with in achievements for us to be proud about. ould win som Decemb d announced just £1 you c stmas ail or post an For erfect for Chri elephone, em s. December; p t tion of Tiding Sport and Fitness after money this ay. ring 2017 edi W –minute holid the Sp NE ping or a last Stoma Surgery Booklet shop go e raffle will ised from th ra oney omy All m Colost Are you looking for ting vital ppor su ur £1,000 • £1,000 owards 24–ho ways to stay fit after t s such as our tes n service oma sociatio Tidings Ost ess undergoing stoma As e and ve Fitn eratur cti t and ry ree lit A Spor urge e of f 500 Club – LAST DRAW a s rang stom pline, after surgery? We are hel azine. December 2015 pleased to mag e, 0 main priz announce the to the £2,50 Draw Winners! In addition r second win £500 fo launch of our ers up could £250 Mrs Holness £ 1000.00 runn of winning new Sport and our chances place or f Mrs Cooke £ 228.00 Fitness after each. Stoma Surgery gs magazine Mrs Bullock £ 114.00 ition of Tidin : is ed pline e th lets. r hel Insid book Mr Foulger £ 45.60 –hou 257 booklet. ket 24 28 4 ffle tic 00 3 o £5 ra 08 ll find tw e you wi r details on th This guide ply fill out you Anonymous £ 45.60 To enter sim n back to ail that sectio Anonymous £ 45.60 contains information on slip and m 3 tear off ON COLUMN CONTINUED simple exercises you can do at home as Mr Murray £ 22.80 well as information on a range of sporting Mr Omar £ 22.80 activities from swimming to yoga. The Anonymous £ 22.80 booklet is perfect for anyone looking at getting back into exercise following surgery. Anonymous £ 11.40 Audio version Anonymous £ 11.40 A spokesperson for the Colostomy Anonymous £ 11.40 Association said: “We’re always looking at The Colostomy Association is excited to NOTE: new ways of enabling ostomates to live a announce that we are now releasing an The following people also kindly full and active life and are very proud to abridged audio version of Tidings for donated all or part of their winnings announce the launch of our new booklet supporters with poor vision. Our audio back to the Colostomy Association: designed to encourage thousands of version of Tidings will feature the top Mrs Holness donated £250; Mr Murray patients become more active.” stories from each edition, read using special donated £22.80 (all of winnings); Mr The booklet is completely free of charge to text to speech software. Each issue will be Foulger donated £25 and Mrs Cooke receive. Please download a version from uploaded one month after print release. donated £20. the Colostomy Association website to save Have a listen to the last version of Tidings us postage or contact the office if you are by visiting: Win up to £25,000 with the new thinking about exercising and would like mixcloud.com/colostomyassociation Unity Lottery – see page 18 for your own copy. CONTINUED ON PAGE 30, COLUMN 1 details. | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 29 SHOWCASE STOMA CARE PRODUCTS AND SERVICES News From the Office

CONTINUED FROM PAGE 29, COLUMN 2 Manufacturer Len Faulkner contacted Hastings Council Photo Competition after he was forced to kneel on the floor to mailings change his bag as there was no other surface space available (as the cistern had for 2017 Calendar – Since subscribing to Tidings magazine you been built into the wall and there was no CLOSING SOON! may have received some promotional toilet seat lid). He is currently awaiting a correspondence about manufacturers’ response to his complaint. There’s still time to submit your holiday events or products which we hope has been Irene Constable in Shropshire contacted her photos for inclusion in our 2017 calendar. beneficial to you. This mailing service is local MP over the lack of adequate facilities handled by our office and all money received We want to show that having a stoma for ostomates in her area. Irene’s letter, goes towards covering the cost of vital shouldn’t limit people’s ambitions with along with her recommendations, were Colostomy Association services like our scenic photos of ostomates’ travels across passed onto the Shropshire Association of 24 –hour helpline and range of free literature the world. Local Councils. that includes this magazine. We strictly Similarly, Caroline Richards shared her story We are looking for digital photos of around comply to Data Protection laws and your on Facebook of changing her stoma bag on 4,961 x 3,508 pixels or files over 3Mb in size data is not passed on to any third parties. the floor – it was shared over 13,000 times should be of sufficient high quality. All Remember, you can always opt –out of this and received coverage in the Metro and the photos must be landscape and along the mailing service, but it is a good way of Mirror online. As a result of this success, lines of our scenery theme. We welcome finding out about new products and local Madeleine Moon MP raised the issue of photos from all types of travel, whether in events. Please write in or contact the stoma –friendly loos in Parliament. the UK or abroad. Colostomy Association if you do not wish Have you had any issues using loos as an Make sure your high resolution photos are to receive any third party promotions. ostomate? Would you like to lobby your MP, sent in by 30 April 2016 to: local council or share your story online? Get [email protected] to Stoma Friendly in touch for help and assistance from Niall qualify for first the place prize of a free wall Norbury at the Colostomy Association. canvas. Those judged as being second and Society update – third place will each receive a free calendar. Do you have a story Information on how to order our 2017 Airport security calendar will be included in our Summer Our campaign to create a stoma –friendly or article for Tidings? edition of Tidings. society continues to succeed with the The editorial team always welcome Colostomy Association now helping to submissions from our readers: train up airport security staff on how to Readership Survey • Stories of how you came to have a respond to people with a stoma. stoma and how you cope with it The Colostomy Association is researching In a period of increased security due to the quality of life of ostomates living in the • Articles on topics related to stomas terrorist threats it is not surprising that some UK and we need your help. • Letters for the Readers’ Writes page ostomates will be stopped and searched • Questions for the Dear Nurse page We would like to know what impact a because of their stoma bag. However, we stoma has on your day –to –day life, so want to make sure anyone with a stoma is In future issues we are planning to cover: please take a few minutes to fill out our treated with respect during a security • Diverticular disease survey on the pull –out section in the centre search. If you had your stoma due to this of the magazine. Your responses will be The Colostomy Association are working condition, do write in and tell us incredibly invaluable for providing statistical with airport security staff at Birmingham, about it evidence for press releases, adding strength London City and Luton airport (so far) to • Colostomy Association’s 50th to our campaigns and improving our make sure that no ostomate has to face Anniversary services so we can support you all the embarrassment in front of fellow Next year we’ll be celebrating more. Ideally, we need at least 1,000 passengers while travelling. helping ostomates since 1967 by responses to make this survey a realistic going back to our roots as the representative sample of the population so Accessible toilets Colostomy Welfare Group. We hope please help us. As an incentive, a £50 to feature stories of people who had Debenhams voucher will be awarded to Since we announced our Stoma –Friendly their stomas in the 1960s and one lucky person, if they happen to give Society Campaign in the previous edition of 1970s when the Colostomy Welfare their contact details on the completed Tidings magazine, we have been receiving Group, as we were known then, first survey. (This voucher was kindly donated emails and calls from supporters who are began supporting people living with back to the Colostomy Association by the keen to get involved. a stoma. previous winner!) If you prefer to complete Supporters across the country have been Please submit your article (in no more than an online version of the survey, please go contacting their local councils, lobbying MPs 1,200 words) to the editorial team at the to: http://goo.gl/forms/DJTegIwvfv and raising awareness about the issues address given at the front of the magazine. Closing date 30 June 2016. they’ve faced on social media. We hope to hear from you soon! n 30 | TIDINGS | SPRING 2016 | 24 HOUR HELPLINE: 0800 328 4257 FOCUS ON HOLIDAYS & TRAVEL

Eight page Travel Feature

Special Feature: Holidays & Travel including • Kevin Young • Tips for travelling • Living Life to the Winner of this years’ CA when you have a Full calendar photo competition stoma Crisi Taylor • Cruising Sarah Squire is so easy for ostomates • Your travel • Wherever we park • Don’t forget your insurance the van is our travel certificate questions home answered David Ford Peter Martin

| WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 31 FOCUS ON HOLIDAYS & TRAVEL

They say life begins at 40. For me it was Heavily reliant on steroids to control my of difficulty,” my surgeon said. “This one is 35, when I had my ileostomy – but that illness, I would be either gaunt or puffy; eight or nine.”), time in intensive care and a isn’t the whole story. fatigue and pain would destroy my energy long recovery. levels and appetite; and the constant need Diagnosed with Crohn’s disease aged 17, to be near a toilet, or at least to know This, though, really was the point where the painful mouth ulcers that appeared where to find one quickly, affected my everything finally worked out. I gained the from nowhere would eventually also confidence and mobility. independence that had been missing from pockmark my gullet, wreck my large my entire adult life, along with seemingly intestine and (somehow) paralyse the It was one thing to have travelled all the way endless energy and greater confidence. I sciatic nerve in my left leg. to Roman ruins on Libya’s coast or the Great also met my beloved Clare, now my wife, Wall of China, but another to know I could I tried to live as normally as possible and whose patience and devotion quickly manage a couple of hours without a toilet. one way to escape from my health, and the eliminated any concerns I had that nobody peculiar hours I kept as a journalist, was to There were many times when I felt would accept me with a stoma. escape. Travel was always a great love and debilitated, but I was determined not to let a thirst for discovery meant there was my illness ruin my life. As so often with Dusting off my passport I was able to enjoy always somewhere else to be explored. Crohn’s, though, I reached a stage where two extremes, both in terms of temperature surgery was the only option; my body kept and geography. Seeing the 12 Apostles In many ways these were more innocent trying to poison itself and the strain of standing proudly in the 45ºC (109ºF) heat times – I remember at the turn of the fighting each new outbreak was taking its was the highlight of a journey along century walking up to the White House, toll. Australia’s Great Ocean Road, while it was handing over $10 and taking a tour, and in the Middle East I seldom felt threatened – Deciding whether to have a stoma was so far below freezing beside the spectacular but travelling the globe was generally enormously tricky and an issue I had tried snow –covered waterfall at Gullfoss in expensive until budget airlines took off. to avoid for years. I feared my body would Iceland that my camera stopped working. be wrecked forever and considered it a Buoyed by the ability to pop over to the I kept seeking hidden gems, and the photo defeat, despite the endless patience and continent for £30 return, I took a year off at which – I’m proud to say – adorns the front reassurance of the Whittington Hospital’s the age of twenty –seven and packed my of this year’s Colostomy Association gastro team. suitcase. I was experiencing the beauty and calendar was certainly one of those. civility of picturesque Scandinavian By the time of the operation in 2008 I was Rubjerg Knude is so much a part of waterfronts, old –fashioned Eastern Bloc desperate to escape the pain and the hold nations still coming to terms with freedom, my illness had over me, and almost threw northern Denmark’s coast that it will fall and long lunches in tiny French bistros. It myself at the surgeon who had known for into the sea in the coming years when the was bliss. a decade that this moment was coming. cliff erodes. Trips further afield expanded my horizons One inadvertent benefit of waiting for so The picture itself was an accident, after I further, from the neon lights and long was the fact he could use the latest inadvertently chose the wrong car park and indecipherable hieroglyphics of Tokyo to the keyhole technology, and having pictured found myself trudging through sand dunes dusty chaos of Delhi and Christmas in the myself with a scars resembling the on an unexpectedly lengthy approach to Australian sunshine. aftermath of a shark attack, I was stunned the lighthouse. at how “normal” I looked. There were, however, many lows. Narrowly It all worked out, though – and that’s as escaping serious injury in a car crash near My recovery was not as full as hoped, good a mantra as any for life with a stoma. Beirut was certainly among them – top tip: however. My colon continued to be Armed with perseverance and a sense of it’s never a good sign when your taxi driver troublesome, even though it was now adventure, there’s nothing to stop you tries to overtake on a narrow, winding being bypassed. Its removal 18 months doing whatever you wish. mountain pass at 70 mph – but mostly my later involved yet another long operation problems were closer to home. (“Your ileostomy was two out of 10 in terms Kevin Young 32 | TIDINGS | SPRING 2016 | 24 HOUR HELPLINE: 0800 328 4257 FOCUS ON HOLIDAYS & TRAVEL

Foreground: The Blue Mosque, Istanbul

I took two and a half times the number of many contrasts, it is the oldest crossroads Cruising is so easy for pouches I usually need, including a few in the world, built astride two continents; Ostomates drainable ones in case of a tummy upset. Europe and Asia. We visited the world All these were packed in a hand –held flight famous and incredibly beautiful Blue The alarm broke our sleep at 4:30am. bag, which I took with me on board the Mosque. Suddenly I remembered today was my coach for safety. big day. My husband and I had always We went ashore at every port on our own wanted to go on a cruise but having a When booking the cruise I filled in a and managed very well. I always took my permanent colostomy operation three medical form at the travel agents, informing emergency pack of spare pouches with me. years before made me very hesitant to the cruise company, P&O, about my These fitted easily into a small makeup bag say the least. I finally bit the bullet and colostomy. P&O did not want me to flush and then into my rucksack. If I was we had booked the three week cruise for my bag on board ship so I was provided concerned I may need to change whilst September 2012. It was too late now to with a red plastic bag in the bathroom. I ashore I always wore a drainable pouch. As change my mind! always wrapped my used pouches in my it turned out, I never had to change whilst own disposal bags first and then popped away from the ship. The taxi was to pick us up at 6:00am and I them into the red bags which I think was very worried that my colostomy would identified how the contents should be dealt I also always took bottled water ashore with not perform so early in the day. We were to with, as the cabin steward changed the red me together with some sandwiches, travel on a coach for six hours with the first bag each time I placed a used pouch inside wrapped in a serviette, and fresh fruit from stop three hours away. it. the self service restaurant. I checked with a waiter if this was allowed and it was never I use flushable pouches, which are brilliant The first two days I was slightly constipated a problem. This enabled us to have a picnic and so easy to use. I decide to ring the but soon resolved the problem by eating in a place of our choosing and saved time, company who supply them for advice some of the delicious chocolate cake which which is precious when ashore. Also it knowing my journey from home to port I usually dare not touch! The food on board saved me from having to consider if eating was going to be a lengthy one. They were was great with a huge variety available in and drinking ashore would give me an very helpful and suggested I use extension the self service restaurant, which was open upset tummy. This worked really well for strips for added protection, as this would all day long. In the evening, if you chose to me. give me more confidence. eat in the restaurant where you were waited on, the Maître d' will help out if the Our last port of call was Palma in Mallorca, Next I spoke to the Colostomy Association menu does not suit you. the largest of the Balearic Islands. The for help on possibly controlling the output. arrival by sea is spectacular with the famous They too were very helpful and advised me Cadiz in Spain was our first port of call; built grand limestone cathedral towering above to try different foods to see which gave the in the 12th century BC it is the oldest the old town. best results in reducing my output. After inhabited city in the western world. Three several trials of eating different foods, I days later we were in Greece docked at The next day we sailed for home. The holiday had been just about the most found eating less fibre helped me. Two days Piraeus. The temperature was in the 90s wonderful experience we have ever had. before departure I ate less fibre and on the and the walk to the top of the Acropolis was We will never forget our cruise and all the day prior to departure I ate very little fibre. too much for us. Instead we walked round different ports; Nineteen days of glorious This worked fairly well for me and I was the old town of Plaka and took a miniature train ride round the streets. blue skies and sea. The holiday of a lifetime, ready when the taxi arrived. I had no I can’t wait for the next cruise! problems at all on the coach going down to The highlight of our cruise was the magical Southampton. and mysterious city of Istanbul. A city of Mary | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 33 David's wife, Rosemary, relaxing after a hard day's sightseeing in York toilet door swings out and can be secured everywhere. (Are we back in Wales?) We Wherever we park the to the opposite side of the van making a decided to make a stop in Craster, kipper small changing area. The sink cover capital of the north. Great campsite and van is our home provides a flat surface and there is water only a short walk into town; supper in the We had always been an enthusiastic available from the wash hand basin in the pub and a few beers. family for camping. Unfortunately I was toilet area. If a site has toilet facilities I use Next day a short trip to Alnwick Castle – we diagnosed with bowel cancer in 2005 them. All sites have chemical toilet stood and looked in awe at this majestic which resulted in surgery to remove my disposable areas and freshwater. Most of building. To think that it has been in the lower bowel, and form a colostomy. them have a waste pick-up so pouch same family for about 800 years. Amazing. Whilst I was recovering I discussed with disposal is no problem. If you are a Harry Potter fan this is the place my wife, Rosemary, how we could Whenever you are travelling as a stoma continue our camping lifestyle. We for you. You can even learn to fly a broom patient you are always concerned whether agreed to think about buying a stick; they give lessons. you have enough supplies and if there will campervan. be public toilets or, better still, disabled We had planned our day trip to Lindisfarne We decided on certain criteria: it was going toilets available. When travelling in the carefully so that the tide was out when we to be solely for ourselves, it had to fit on our campervan you take all of these with you. made the early morning crossing on the drive, ready to take off at a moment’s causeway and the tide was in when we No need to worry about being stuck in a notice, and we were only going to use it for were walking around the island. The castle massive traffic jam. You can just turn the exploring the UK. In our search we were is not to be missed, and have a close look seats around, put the kettle on, if necessary impressed by the Autosleeper, Ford Duetto. at the shed; they are made from upturned use the toilet and even change your pouch We subsequently bought one which was six boats. When the tide went out we crossed in comfort. years old. the causeway back to Seahouses and had Although we had visited Scotland many supper in the village. It has given us wonderful service over the times, in getting there we had always driven past 10 years and taken us to so many It was a long drive back to York but this has through Northumberland without ever places we would otherwise never have got to be the best campsite because it is stopping to explore the county. So just over visited. We always put our bikes on the rack only about 100 metres from the city walls. a year ago we decided that we must make at the back which gives us a chance of Being a Caravan Club site it is very busy and the trip from our home in South Wales and cycling as well as walking. From the start advance booking is essential. However, it is spend a few days taking in some of the Rosemary has kept a small diary of the the best site for visiting the city: York sights on the eastern side of the country. places that we have visited; brief notes Minster, Viking museum, Castle museum, about the campsite, nearby hostelries and Driving north east on the A46 we called in Railway museum, The Shambles, more historic sites together with thumbprint for a cup of tea with our son and his family chocolate than I have ever seen. Did we see photos. Last Christmas I put it all together in Kenilworth. Then on to Lincoln, where everything? Definitely not, so another visit in a photobook reminding us of the last 10 we found our campsite, set up our pitch will have to be scheduled. years of exploring the UK in our van. then drove into the city and parked up in one of the cobbled streets near the castle Leaving York the next morning we had to We try and walk coastal paths at least twice and walked to the Cathedral – a wonderful make one more stop in Yorkshire: a year and have covered many of the paths building and a chance to see the Magna Harrogate and a cup of tea and a bun in in Pembrokeshire, Dorset (Golden Cap), Carta. Betty’s Tea Room. After a walk around the Cornwall, Devon, North Wales and Norfolk. town, onwards to Kenilworth to stay with We have even camped on Upper Chorlton Next stop Scarborough. Never been there our son, his wife and the grandchildren. Road in Manchester! The van has given us before but somebody told us it was a bigger Best campsite of the holiday; park on their complete freedom in allowing us to choose version of Barry Island so we should be at driveway and hook up. where we want to visit. home there. We stopped and made a cup of tea just underneath the castle across the Then home again, but not for long. In the van we are self –sufficient, having a road from the North Sea but did not see Rosemary will tell you that every week I ask cooker, fridge, gas heating, shower, toilet either because of the fog! Then on to if we have any free time to get away. If we and washing facility with enough water to Whitby, where we could not have asked for haven’t been touring in the van for a while allow us two nights (three days) freedom more appropriate weather, because this is I get withdrawal systems, go out for a drive, to camp wherever we want if no campsite where Bram Stoker wrote Dracula! park up, make a cup of tea, sit down and is available. The shower/toilet cubicle in a look at the scenery campervan is quite small, which can make No fog next morning, just a cloud –free it difficult to change a pouch. However, the horizon. On to Northumberland; Castles David Ford 34 | TIDINGS | SPRING 2016 | 24 HOUR HELPLINE: 0800 328 4257 Readers’ Feedback Questionnaire . 6 1 0 2 e n

u The Colostomy Association is researching the quality of life of ostomates living in the UK. We would like to know what impact J f a stoma has on your day –to –day life as well as what you feel the public perceptions of people living with a stoma are. o d n e Please take a few minutes to fill out our survey. Your responses will be incredibly invaluable for improving Colostomy e h

t Association services, providing evidence and adding strength to our campaigns. y b

A Please complete this survey and return it in the enclosed envelope to the Colostomy Association by the end of June 2016. Q 4

1 A £50 Debenhams voucher will be awarded to one lucky person, if contact details are provided on the completed survey. G R

, g n i d a e R

, t e Ability e r t S 1. As the result of having a stoma have you ever found the following difficult in the past year? n o d n 1 2345 o Somewhat Very Not L Not at difficult difficult applicable

5 all difficult 9

, e s Travelling within the UK u o H Travelling abroad e s i r p

r Meeting new people e t n

E Maintaining a relationship with friends and family

, n o i Attending social events t a i c o Having an enjoyable sex life s s A y Performing duties at work m o t Finding or changing jobs s o l o

C Enjoyment of hobbies and interests

: o t t Taking part in physical activity and sports s o p r o e n i 2. As the result of having a stoma, have you felt restricted in any of the following areas in the past year: z a g a 1 2345 m Very Not Not e at all Somewhat restricted applicable h t n i Travel d e d i v Diet o r p Choice of clothing e p o l

e Job opportunities v n e Social activities e h t

n Sporting/physical activities i n r u t e r d

n 3. As a result of having a stoma, have you had to: 4. Have you changed your style of clothing because a

e (TICK ALL THAT APPLY) of your stoma? n i z a g a Reduce the amount of hours you work Yes, a great deal m e

h Change your job Yes, somewhat t m o Stop working altogether Yes, only a little r f t u Been turned down for a job No, not at all o l l u None of the above Unsure p

, e t e Not applicable, as not employed l p m o c e s a e l

P Continued overleaf... | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | PULLOUT | 1 Readers’ Feedback Questionnaire

Social

5. How comfortable do you feel talking about your stoma with: 1 2345

Very Neither Comfortable Very Not uncomfortable nor Uncomfortable comfortable applicable

Current Partner

Family

Friends

Medical Professionals

Support Group

Stoma charity

New Partner

People online

Work Colleagues

6. Have you ever experienced discrimination 7. Do you think having a stoma is a taboo subject in because of your stoma? (TICK ALL THAT APPLY) the UK? (rudeness, criticism, sarcasm, mockery, unkindness, etc) Yes At work

No In public Don’t know Online

At home

8. Do you believe attitudes towards people with a I have not experienced any discrimination stoma are: If yes, what was your worst experience:

Improving

Staying the same

Getting worse

Don’t know

9. Have you ever been challenged or criticised for 10. Have you ever experienced problems with airport using a disabled toilet? security as a result of having your stoma?

No No

Not applicable (I have not used a disabled toilet) Not applicable

Yes (please give details) Yes (please specify)

11. Is your stoma classified as: 12. Do you pay for your stoma supplies?

Temporary Yes

Permanent No, they are free

Unsure Unsure

2 | TIDINGS | PULLOUT | 24 HOUR HELPLINE: 0800 328 4257 Readers’ Feedback Questionnaire . 6 1 0 2 e n Psychological u J f o 13. How have the following changed since your stoma operation? d n e 2 3 4 5 1 e Significant stayed significantly Not h t the same improved applicable worse y b

A Confidence Q 4

1 Body image G R

, g Mood n i d a e Mental well-being R

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e Relationship with partner e r t S

Relationship with family and friends n o d n o L

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9 14. Do you feel you currently have control of your 15. As a result of having a stoma, have you had any

, e

s life? suicidal thoughts in the past year? u o H

e Yes Yes s i r p r No No e t n E

Unsure , n o i t a i c o s 16. s In the past year, have you ever attempted suicide A

y or self-harm as a result of having a stoma? m o t s o Yes l o C

: No o t t s o p r o 17. Do you use any of the following Colostomy 18. Please indicate if there are any improvements e n i z Association services? (TICK ALL THAT APPLY) the Colostomy Association could make to any of a g

a its services Tidings Magazine m e h t Literature and Factsheets n i

d 24 –Hour helpline e d i v

o Junior Ostomy Support Helpline (JOSH) r p

e Closed Facebook Support Group p o l e v Stoma Aid n e e h t n i 19. Do you have any other feedback or suggestions? n r u t e r d n a e n i z a g a m e h If you are happy for us to follow up your response to this survey then please include your contact details t

m below. (Optional) o r f t u o

l Title: First name: Surname: l u p

, e t Telephone: e l p m

o Email: c e s a e l

P Thank you for your feedback. | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | PULLOUT | 3 CA NEWS FROM THE OFFICE

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Fitness After Stoma A Q 4

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Surgery Leaflet d a e R

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Looking to get back into exercise after having a stoma or e e r t

ine: S elpl ur h 7 ho 25 n 24– 8 4 looking to try out a sport for the first time?

2 o 00 3 08 d k n rg.u o n.o Order yourself a free copy of our newest information booklet L o ciati o 5 yass m 9 sto .colo , ww containing vital information on how to stay fit with a stoma. e

w s u o H Whether it’s football, jogging, swimming or simple exercises to try in your own home – our newest e s i r p booklet has something for everyone. Get moving and get a copy of our booklet today. r e t n E

Order a copy of this booklet today or download one from our website: , n o i t a i

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the Colostomy Association straight to your inbox. l e v n e Our e-newsletter contains updates from the Colostomy e h t

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Association as well as news on the stoma industry. Simple n r u t

and informative – our e-newsletter arrives in inboxes on the e r

d n a last Friday of each month. e n i z

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, e t e Please complete, pull out fromT thhe amnagkaz iyneo aun df roetru rny ion uthre efneveldopbea pcrokvi. ded in the magazine or post to: l p m

Colostomy Association, Enterprise House, 95 London Street, Reading, RG1 4QA by the end of June 2016. o c

e s a e l P 4 | TIDINGS | PULLOUT | 24 HOUR HELPLINE: 0800 328 4257 FOCUS ON HOLIDAYS & TRAVEL travelling Tips for a stoma hen you have Going away from home for the fiwrst time able to get an increased hand luggage to worry. Normally I wander through security post op can be a daunting prospect for an allowance by contacting the airline before more concerned about getting a coffee and ostomate. Whether it is camping, you fly or if you are with a group may find a pastry at the other side than my bag! caravanning, a business trip, a few days the normal allowance is plenty spread So you’ve made it through security and at a B&B or a long haul flight to an exotic between you all. Liquids and gels, including hopefully not spent all your holiday funds location many of us worry about that first aerosols CAN be carried in hand luggage as in duty free. Next comes the flight itself. We trip away. long as they are no more than 100mls and have all heard stories of colostomy bags are placed in a clear resealable bag up to How will I cope with the bag? Where will I blowing up like balloons when flying but 20x20cm sized which you must remove at dispose of it? How many should I take? Can although everyone produces more gas due security and place in a tray to be x –rayed. If I go swimming? So many uncertainties can to the change in pressure, as long as you you don’t follow those guidelines they may be off putting as let’s face it, you feel safe have a working filter on your bag there will be confiscated. Some scissors can also be at home, so maybe it’s better not to go carried in hand luggage now so check the be no problem. The idea of changing a bag away? Not at all! I think it’s fair to say many airport website for details. On the subject in a tiny aeroplane loo can be worrying too. if not most of us have thought long and of airport security, many of us worry about Many people ask if they should just stop hard about going on holiday with a stoma. what will happen with a stoma. Duncan eating before they fly but this can lead to But actually, a bit of planning and there is Wells wrote an article in Tidings Winter more problems so we advise that a few absolutely no reason a stoma should stop 2015 outlining that the best thing an days prior to travelling you stick to foods you enjoying a trip away as much ever. In ostomate can do is not draw attention to you know agree with you so upsets are fact I think a relaxing trip should be themselves. You do not have to tell anyone unlikely. But having changed a baby’s nappy prescribed after each surgery as part of the you have a stoma and there is no need to in one of those loos I think me and my bag recovery! act any differently to before. You may like would be fine! I might take an air freshener to spray when I’m done, but you know Let’s start at the beginning and planning to carry a Colostomy Association travel what, everyone’s poo smells so I wouldn’t your stoma supplies. When going away we certificate and a copy of your repeat worry too much. recommend you take twice the number of prescription in case of any questions but supplies you’d usually use during that time the chances are you will be through as We are now at our destination, whether we period and if you normally use closed bags, quick as anyone else. have flown, travelled by car, train or ferry. If take a few drainables too in case of upset Many worry about the body scanner and you are staying in a hotel or B&B you may (or in my case more likely over indulgence!) until last year I had never encountered one. worry about disposing of used bags, but Sachets of Oral Rehydration Salts eg I don’t know if they are becoming more they can simply be placed in your usual Dioralyte, Electrolade etc when mixed with common or it was the airports I used, but I disposal bag and placed in the bin in the water will replace fluid lost due to diarrhoea was scanned four times last year. The first bathroom. The cleaners will take them and prevent dehydration. So it is a good time, out of interest I asked the lady about away as with other rubbish. If you are idea to pack some of these – especially if stomas, explaining I was a Colostomy concerned about leaks you may like to take you are going to a hot country. If you irrigate Association trustee. She took the time to a few disposable bed pads just in case, but you may like to take a spare kit and a trusty show me the digital image which showed if you do leak on the bed please don’t worry hook. There is more info about travelling for a yellow square in the area of my stoma. If – the staff will have seen it all before. irrigators on page 23. a square box comes up you may then be If you want to swim, the stoma should not It is a good idea to pack a small kit to carry frisked but this takes all of 10 seconds and stop you. Colostomy pouches these days with you for the journey, or trips out once if you say you have a medical device it are discrete and cannot be detected at your destination. You could add small explains the yellow box they are seeing on beneath a swimsuit, especially if it is sachets of cleansing gel in case you need to the screen. The other three occasions I said patterned. However, if you are concerned change your pouch in a toilet cubicle where nothing and airport staff said nothing so I about this, most manufacturers make no water is available. A small amount of gel went on my way. mini –bags, so it is worth contacting them on a piece of toilet paper can be used to I had a sacral nerve implant a few years ago to see if they make a smaller version of the clean round the stoma and when your bag and was advised not to go through the one you are currently using. Stoma caps is in place the rest used for your hands until metal detector so they used a wand version. cannot be seen beneath the skimpiest of you are able to wash them properly in a My jeans zip set it off which lead to a quick swimwear. If the filter on your stoma bag hand basin. Several of the appliance frisk. They felt my hernia lump so I gets wet, this can cause it to become manufacturers and suppliers now produce mentioned I was wearing a medical device. blocked later on. To keep it dry cover it with sachets of these no rinse, cleaning gels. As the scanner had beeped and I had a one of the sticky patches, now provided in “lump” they asked if I would go to another all boxes of appliances, before getting into And remember a RADAR key will give you room. It took no more than 2 minutes and the water. access to all accessible toilets in the UK, all I had to do was give them a glimpse of where there’s always a wash basin and a All that remains is to relax and enjoy your the bag. They were very professional but bin to dispose of used appliances. See page trip. Travelling may require a little more also very reassuring so I would honestly say 15 for details of how to obtain one along planning than before but having a stoma don’t worry if this were to happen to you. with an ID card. should not stop you enjoying time away You will not be the first and certainly not the from home. If you are flying we recommend you take last ostomate they see. This isn’t something your supplies in hand luggage. You may be that happens every day though so no need Sarah Squire | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 35

FOCUS ON HOLIDAYS & TRAVEL

Tra v el Ce fo rti r p fic eo ate a ple co w lo ith sto my

2 4 Ho 08 ur T 0 H OL 0 e L F lp I RE 3 l nte E F 2 in rn RO 8 e ati M 4 on TH 2 al E 5 : + UK 7 w O 44 O FF 11 NL w IC 8 Y w E H 93 O 9 1 .c UR 53 o S 7 lo ON bag not mine. The officer in charge of s LY Never travel without tom ya the cabin assured me they would find ss husband) oc iat mine before we took off and offered your Travel Certificate ion through with .or g.u to call me a doctor, which I did not The Colostomy Association travel my luggage for the k need. Was I relieved to eventually see certificate explains that the holder has had hold although it had been my bag. I was then taken to the toilet a surgical operation which makes it clearly marked by another at the front and told I could use it necessary to wear a pouch to collect body assistant as hand luggage. When I got waste and also has to carry spare supplies to the other side I asked for it and although we were not in the air. We in carry –on luggage. This is translated in 15 was told it would be returned to me were moved to club class seats and I different languages: Arabic, Croatian, at security. They knew nothing about was given a cup of tea. Not a journey French, German, Greek, Hindi, Italian, it and told me to find the person who to be repeated... Mandarin, Polish, Portuguese, Russian, had taken it, not easy as I was in a ..I could not get anyone to take notice Spanish, Thai, Turkish and Vietnamese, so it wheelchair. We continued to ask until I produced my Certificate! can be used all around the world. various staff and got no help. • Laura, who visited the Colostomy It includes a form which has to be By this time I was getting worried as Association stand at an Open Day completed with the holder’s details I needed to change. In desperation I including passport number and doctor’s went to the information desk with my organised by the stoma care name and address. Then it has to be certificate opened to Portuguese. department of Peterborough City countersigned by the doctor or stoma care Immediately the lady there was on Hospital told us that her travel nurse and include the practice stamp. If you the phone and someone else was certificate came in very useful when remember to ask your doctor to sign it called, there was a buzz of activity she was on holiday in France with her during a consultation, you may not get eventually someone came to tell me husband and children. They were on charged for this service. that they were searching the hold for an exchange visit staying with a my bag. Next I was told they had French family. She showed them the This certificate is to explain the purpose of found it and they would hand it to French translation explaining what a a pouch to security staff at airports should me as I boarded (there being no time colostomy is so that were aware of it be detected during a body search or body to bring it to me). her needs when irrigating and scan. Therefore make sure you have it in your hand or your pocket as you go through On arriving on the plane I discovered understood why she would take a security, not in your handbag or carry –on H tha t the y had fo und my h u 26/02/2016sband’ s 15:16 Page 1 little longer in the bathroom. n luggage which will be on the conveyor belt.

Two Tidings readers found that their Your Travel Checklist CA Booklets, Leaflets travel certificate can also be useful in and Factsheets are available other situations. On top of all the normal precautions, like making sure your travel documents are in order, take copies of important documents with you in case the originals get lost or stolen. • Nancy writes: Earlier this month I Travel Advice stomy Having a colo revent should not p The ostomate needs to remember to: elling was travelling back from Tenerife by you from trav broad at home or a Trave Certi l ficate plane. I had carefully put all that I pack sufficient supplies for your carry your Travel Certificate with needed for my stoma in my hand stay; you especially when passing through immigration or security Freep hone help baggage. My plan was to change at 0800 line:

take all supplies and travel stoma elpline: 328 4 areas; Freephone h 257 4257 the airport between check –in and the kit as hand luggage; 0800 328 w ww. colos tomy pack some form of electrolyte assoc iation .org.u call to the departure gate. When I ask the airline in advance if you replacement solution in case you k n.org.uk myassociatio took my luggage to the check –in the need extra hand baggage for your become dehydrated; www.colosto supplies; Simply contact: assistant insisted I needed to let her drink bottled water, avoid ice in ‘check in’ online 24 hours before drinks and use boiled or bottled General Enquiries: 0118 939 1537 put my hand luggage (and that of my departure to secure your preferred water to clean around your stoma seat; in countries where water could be Monday to Thursday contaminated; and 9am – 5pm and avoid food and drink that are likely Friday 9am – 3pm

Traveller’s Tip to cause upset or excessive wind store your supplies in a cool place, or

the day before you travel; out of direct sunlight. E-mail: If travelling with a partner, include half [email protected] your stoma and/or medical supplies in pack all your normal medications and any that may help an upset or download from our your luggage and half in theirs. Some stomach; Website: travellers do the same with their clothes! www. colostomyassociation.org.uk

36 | TIDINGS | SPRING 2016 | 24 HOUR HELPLINE: 0800 328 4257 FOCUS ON HOLIDAYS & TRAVEL life to the ing Fu Liv ll

The photograph, above, was taken in and regain my strength. It did not actually can be sick on the inside. On a recent beach Zante, Greece in 2010, the first time I take me very long to accept and get used to holiday one of the boys spotted another wore a bikini after having a stoma. Since life with a stoma, although I had quite a few lady wearing a bag so we acknowledged then I have travelled extensively to Spain, accidents with the flange not sticking to my each other with a smile. Majorca, Menorca, Greece, Cape Verde skin and the bag leaking. Because I am of My stoma has not affected my life for the and Africa. slim build the stoma nurse suggested a worse but there are certain things I do convex bag which had a firmer more secure My husband, Ian, comes from Guernsey and differently, for instance I would not eat a fit and I have used this ever since. we regularly go over there to visit all his meal then take my bag off to shower as it family. And yes I always wear a bikini on the I returned to work at Bolton social services would be very active. I find that my stoma beach. I am also a Karate Sensei (instructor) as a contact officer in child protection, a can make noises so I tend not to eat if going and this summer learnt to ride a motorbike very challenging job. My manager and work into a meeting. I still wear tight clothes and and took my Compulsory Basic Training. So colleagues were extremely supportive and jeans but the waist band has to sit just you could say having Inflammatory Bowel made changes to my role to ensure I could above the stoma. From the start of my Disease (IBD) and a stoma has not stopped work effectively as part of the team. Without illness in 2009 my husband has been a me, it has spurred me on and made me live this support I doubt I would have gone back constant source of love, support and my life to the full. to the job I loved. encouragement as has my sister, Jacqueline, (who thankfully obtained my I first became ill with weight loss, fever, After surgery I also went back to my Karate first copy of Tidings, which I have kept ever sickness and chronic stomach pains in club – I am a black belt and very proud of since) and the rest of my amazing family January 2009. it. The other members know about my and friends. stoma and are all very kind and do not treat In March I was admitted to hospital and me any differently. Sensi Michelle, the A couple of tips to pass onto fellow ‘Stomys’ was put on a drip and treated with steroids. founder of Chi Chuan in Radcliffe has been if going on holiday, I always check with the I made some improvement and was amazing, visiting me in hospital and making airline welfare department and request a discharged 10 days later, only to be rushed sure I never gave up. I now hold the rank of seat near the toilet and an extra cabin back in to hospital the very next day, very 3rd Dan and work as a voluntary Karate luggage allowance for bags, extra clothes etc. poorly and suffering from the bacterial instructor twice a week. and I have always been granted this at no infection Clostridium difficile. After seven extra cost. If staying in a villa I always ask for days in isolation I appeared to get a little My family have been a great source of the en-suite room. Once on holiday I am very better then in the middle of the night on 30 support especially my husband, Ian. He has careful with food and drink not over doing it April, my wedding anniversary, my stomach been my hero; not once was he fazed with and sticking to what I know I can digest. became very distended and painful. My the many challenges and obstacles that I I love to travel and wear a bikini on the bowel had perforated. came across whilst learning to cope with beach. I do not let my stoma stop me doing my stoma. We have been foster carers for When I awoke two days later in the High this; in fact I am quite proud of my stoma the local authority for many years and I am Dependency Unit I was given the very and happy to share my stoma story. now involved in training new carers. My surprising news that I’d had most of my husband and I foster young people on a Crisi Taylor large bowel removed and now had an long term basis and we currently have a 16 ileostomy and would have to wear a stoma year old and a 13 year old who are very Editor’s Note bag. Still under the influence of so many lively and energetic. While this can be The Colostomy Association understands drugs, I told the nurse that they had the challenging at times, the boys are a useful that not everyone adapts so well after wrong person as I did karate and had a distraction as they keep us both active and surgery and it can take a while to adjust to six –pack and it would not look right. entertained. The boys have been very loving living with a stoma. Our 24 –hour helpline After being so poorly and off work for such and caring particularly admission with a and our closed Facebook group are ideal a long period having a stoma did not really twisted bowel and they now realise that ways of supporting you through this life bother me, because I began to feel better while people look fine on the outside, they changing surgery. n | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 37 FOCUS ON HOLIDAYS & TRAVEL

Travel Insurance... ? ?..Y?our Q?uest?ion A?nswe?red

Q: What criteria do? insurance companies with it. D?o I still ha ve to inform my med?ical emerge ncy costs have been ?consider when calculating t?ravel insurance company? ? recovered by insurers. ? insurance premiums? A: It is advisable to do so but often depends Q: If stoma supplies are stolen or lost A: Age of person(s) to be insured z on the insurers’ medical declaration does travel insurance cover the cost of requirements. If you have a stoma then z The level of cover required sending out further supplies? you will be having prescriptions on a z Countries to be visited regular basis for the bags and other A: The cost of replacement is covered z The period of the travel, whether it’s supplies, so the likelihood is that it would subject to the policy excess but the cost an annual multi –trip or a single trip have to be declared. of sending out supplies is usually not Any pre –existing medical conditions z Q: Are follow –up appointments and covered. However, if you are able to z Extensions in cover required ie routine colonoscopies regarded as source supplies in the country you are winter sports, hazardous/sporting ongoing treatment? visiting and purchase such items, as long activities, gadget cover A: No – these are check-ups following as a receipt is produced then the cost surgery/treatment. An example of can be reimbursed once you return Q: How and why does having a stoma ongoing treatment is radiotherapy or affect travel insurance premium? home. The CA can give advice on such chemotherapy. If you are on a waiting suppliers in the countries you are list for treatment or investigation you will A: A stoma itself has little to no effect. The visiting. insurers, however, need to know the need to make your insurer aware. type of stoma and, more importantly, the Peter Martin A.C.I.I. Q: If stoma surgery occurs during a reason why one has a stoma, as this period covered by annual travel Chartered Practitioner may affect the premium. insurance is it necessary to inform the Bournemouth Insurance Group Answers can include: insurance company? Remember: z bowel/anal/rectal cancer; A: Yes – This is a material fact and any z Crohn’s disease; changes to the medical declaration z it is important to obtain alternative travel insurance quotations and z diverticulitis; during the period of insurance must be advised so insurers can reassess the risk compare on a like for like basis, so z bowel perforation or as a result of and charge an additional premium if you can make an informed decision internal injuries suffered in a deemed necessary or in extreme cases as to which insurer to use; car/motor cycle accident; or refuse to continue your cover. to check the limits of cover and the z an accident at work. z Q: Is it advisable for holders of a level of excesses applying; European Health Insurance Card Q: How soon after surgery is it possible to take a note of important contact (EHIC) to travel in the EU without z to obtain travel insurance? travel insurance? details in case of a serious emergency A: This depends on the type of surgery and as well as a note of the policy A: No – However, sometimes the EHIC is relevant recovery period. Insurers ask if number and the insurer; the only available option as a full blown the surgery was less than six weeks ago, travel policy may be too costly due to the z to check the policy cover and six to 12 weeks or over 12 weeks and proposer’s medical history and other documentation to make sure they are then quote accordingly. factors. The EHIC does not provide in order and meet with your Q: What is a pre –existing health condition? cancellation and curtailment cover or requirements; repatriation expenses (the costs of A: An illness or diagnosed condition for z to read the claims procedures and getting you home – in the worst cases which you have received advice, or you note what information is needed to this may involve the hire of a private have experienced symptoms or received support a claim; medical aircraft to fly you home). Also treatment. Different insurers will have cover does not apply if taken ill in z it is often wise to carry additional their own list of conditions they need to international waters i.e. on a cruise ship. supplies of your regular prescribed be informed about before you travel so All travellers relying on the EHIC should medications in your hand luggage in you should always pay close attention to check the exact cover provided as they case your bags are delayed; and the insurers’ medical warranty. can vary – treatment is usually limited to z the cheapest policy may not always Q: I have had a stoma for a few years state hospitals and some insurers will be the best. now and have never had a problem waive the excess if a portion of the 38 | TIDINGS | SPRING 2016 | 24 HOUR HELPLINE: 0800 328 4257 LIVING WITH A STOMA: CARERS – BARRY MCERLAIN

A carer’s perspective Inset: Dian & Mack on the Great Wall of China Above: MV Dalmatia “We can manage on a small ship like this so a large cruise liner or hotel room is no problem at all” You may remember in the last issue Mack honestly and frankly as possible. Most weight, to accommodate essential medical shared his experience of supporting and people had some idea what a colostomy dressings. They normally ask for a letter from caring for his wife, Dian. In his second was even if they did not know the full the hospital to confirm the necessity of article Mack considers going to stay with implications. One acquaintance did not having this equipment with us, and not in friends and relatives as well as holidaying quite understand as she asked if my wife the hold baggage. Most airlines, BA, easyJet, abroad. had to go to the hospital every year to have KLM, Virgin and Jet2 have all been very her pouch emptied! At some point you may want to go and accommodating. Monarch keep their stay with friends or relatives, but the Going abroad has not proved a problem; records of our application on permanent file person with the stoma may be very we often travel with Saga, and their so we don’t have to keep asking. reluctant. This is not because they just insurance is very acceptable. They know all Whatever you do, do not let the stoma put want something that is bit more about Dian's colostomy and have not pampered and special. placed any restrictions or excesses on our you off flying to faraway places. Dian had policies because of it. However, I must point her stoma in 2008 and since then we have As a carer/partner I am aware that my wife out Dian’s procedure was as a result of been on holiday a number of times every is a little bit nervous about a pouch leaking diverticulitis and not cancer. We have used year. We have stayed in hotels in the Isle of in somebody else’s bed. No matter how Staysure and Global insurance and when Wight and Jersey, visited China and the USA. much reassurance I give her, the fear we took a cruise holiday with Thompsons We have even sailed the Adriatic aboard the remains, despite the fact that we have been we went through their own insurance 28 berth MV Dalmatia and visited ports and on holiday many, many times and there has screening, all without any problems. small islands on the Croatian coast. All never been a problem. However, what we that’s required is a little bit of additional tend to do now is tell relatives we are taking As mentioned in the last issue of Tidings, the opportunity to do some touring in and some suppliers will send supplies abroad. planning, and the will to not let a stoma around, but we will call in to catch up on We thought we would give this a try. Five spoil our life. old times. Then we play it by ear and, if days after they arrived in the country, we Bon Voyage necessary, stay in a hotel, or boarding were informed that the supplies were Mack house. We always take cot –sized bed waiting at customs at the main airport. We protection which allows my wife to sleep a had to go in person and pay 100 import € Do you support or care for someone little easier. duty before they would be released; this with a colostomy? If you would like to was in Croatia, a country within the EU. So Then there is the question of if or how you contribute to our Carers’ Column: the lesson is to make sure you take tell others about the stoma. Our view was sufficient supplies, and a few more, just in e-mail: that it was better coming from me, the case unusual foods or spices affect the [email protected] carer/husband. Although I am closely regularity of the stoma output, or you or write to: involved, it is not me with the stoma and as experience an unexpected delay. The Editor such I am able to be a little bit detached. Colostomy Association Most friends and relatives were aware that When our holiday involves a flight, we Enterprise House Dian had to be admitted to hospital, and approach the airline a couple of weeks prior 95 London Street asked how she was and what had been the to the flight and explain that we would Reading problem, so the subject was simple to bring appreciate being allowed to have one more RG1 4QA up and we just answered their questions as small piece of hand luggage of about 4kg in | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 39 CA NEWS FROM THE OFFICE :Vh^HegVnž NEW 6Y]Zh^kZ GZbdkZg### 7ZXVjhZndjg Xdb[dgi^h^bedgiVci#

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NOW

available40 | TIDINGS | SPRING 2016 | 24 HOUR HELPLINE: 0800 328 4257

11:42:27 CA NEWS FROM THE OFFICE Colostomy Association launches two new pilot schemes

Getting Active Improving the knowledge and skills of carers

Since the beginning of the year the Colostomy Association has Carers in Berkshire have received a boost in their knowledge helped people living with a stoma get more active again and skills thanks to a pilot training scheme from the Colostomy through a series of pilot workshops in Berkshire. Association. The Colostomy Association delivered a series of workshops in Dozens of carers have taken part in one –day training sessions held support groups across Berkshire aimed at getting ostomates on across Berkshire. Run by a professional stoma care nurse, carers their feet and active. Attendees were encouraged to get moving received up to date advice and information to ensure they are able through specialist chair yoga sessions that met the needs and to properly look after people living with a stoma. abilities of those on the course. The Colostomy Association has launched the pilot scheme to Although having a stoma is no limitation to living an active life, ensure that adults and children receive a good level of care. many adults and children find it difficult to take part in activities Research from the charity has revealed a lack of knowledge and particularly after stoma surgery. training among many individuals caring for ostomates. A Colostomy Association spokesperson said: “We believe that The training sessions were not only attended by friends and family having a stoma should not limit people from living a full and active of ostomates, but care homes and agency staff to ensure those life, but some ostomates do need a little bit of additional support most in need are receiving the quality of care they are entitled to. to help them become more confident about exercise and fitness. A spokesperson for the Colostomy Association said: “Carers are “The response to our pilot Active Ostomate sessions in Berkshire vital in making sure that people are given the right sort of has been incredibly positive and we hope to launch the scheme in assistance they need on a day to day basis. Therefore it is essential other parts of the UK.” that they have the proper training and knowledge to support those in their care. The Colostomy Association’s Active Ostomate workshops were funded by Sport England and Berkshire Community Foundation. “The pilot scheme for our Caring for Colostomates course has been incredibly successful and we are working hard to ensure that Based on the success of these pilot workshops, the Colostomy professional and unpaid carers across the UK will soon benefit from Association is now gathering the evidence needed to compose the Colostomy Association’s information and advice.” compelling applications for wider funding. This will enable us to run more sessions in other parts of the UK to make sure that many This pilot project has been funded by The Big Lottery Fund and more ostomates become and stay more active. additional funding is currently being sought to bring the carers training course to other parts of the country. In addition to the workshops, the Colostomy Association has also produced a new free booklet with information and advice for The Colostomy Association also provides a Caring for ostomates looking to stay active or to try out a new sport – more Colostomates booklet which is available without cost on request. details on our booklet can be found on page 29 in this issue of Please contact the Colostomy Association if you would like a copy Tidings and can also be downloaded from our website. n or download this booklet from our website. Look out for future updates and photos of these two pilot projects in a future edition! n | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 41 Fittleworth Home Service Dispensing

Delivery to any UK address from Ostomy and urology nurse 38 Care Centres throughout the specialists available to provide Discreet,UK from Plymouth Convenient, to Edinburgh free Reliable advice and support

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ZZZ¿WWOHZRUWKFRP National: Freephone 0800 378 846 Scotland: Tidings0616 Freephone 0800 783 7148 LIVING WITH A STOMA FROM OUR READERS From One Ostomate to Another

The column where ostomates share their up with just a colostomy. As a glider pilot I well –padded normal saddle would be experiences and pass on their hints and thought that this would get rid of one better. I just wondered if any readers had tips. problem when being in the air, in that I any experience of cycling after APeR would not have to land because of the surgery, and might have some observations Three Colostomy Association volunteers need of a loo! or advice to offer. answer questions about taking up sporting activities. You have had your stoma for three years Regards now and I guess there have perhaps been A.M. Gliding a few problems at the outset but all have settled now; that being so, I do not think Ian Jackson, Colostomy Association I am 68 years old having had a stoma for that you should have any problems at all volunteer & Trustee, replies: three years and am coping very well with by flying with a stoma. We do trial lessons no on –going issues. I have always had a at our club and I doubt very much that the desire to try gliding and have recently heights reached would be any more than visited a local club. 1.219km (4000ft) maximum, and dependant They inform me that the cabins on the on the type of lesson you are having they gliders are not pressurised and I wonder if usually last between 10 minutes to an hour. this will cause leakage problems because of Since my stoma was formed I have never increasing pressure differentials between had any leakage problems or any other internal abdominal and lowering cabin effects from the flying experience, so go pressure the higher the flight goes. The club ahead and enjoy - by the way it is very easy assures me that flights are “not very high” to get hooked on flying a glider as (whatever that means). I currently use a happened to both my wife and myself way one piece drainable pouch and seek your back in 1995. advice on any possible problems and their solutions as I am determined to “give it a Regards and Happy flying go”. Paul Foulger Stephan Willers Cycling Paul Foulger, Colostomy Association I had my APeR surgery in autumn 2011 and volunteer, replies: In May 2014 I had APeR surgery and a after a couple of false starts managed to get permanent colostomy for rectal cancer. The back to cycling in the autumn of 2014. I perineal wound took a long time to heal started off on a town hybrid bike that has a fully (seven months), and even now is still little suspension and quite a broad padded very tender, and sitting for long periods can saddle. By spring 2015 I was able to get be quite uncomfortable. I would like to try back to riding a road bike with a very thin cycling again, and after doing some saddle. Although I’d always said I’d never research on the internet thought that become a Lycra –wearing cyclist I do find the perhaps the Rido R2 saddle might be padding in cycle shorts and leggings really suitable. However, after trying an ordinary does help so now wear them for all my long I have been gliding since 1995 and saddle for a short distance, the discomfort I rides. I think my advice would be to try thoroughly enjoy the sport and am sure felt seemed to come from the buttocks different saddles and even bikes, if you can, that you will too. I had my stoma formed in (presumably because I have rather less to find something that best suits you now, 2001 and at the time it was thought that I padding there than I had before surgery) then start off with short rides and build up may have to have two! However, I finished rather than the perineal area, so perhaps a CONTINUED ON PAGE 45, COLUMN 1 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 43 CA NEWS FROM THE OFFICE Cycle for the Colostomy Association

11th September 2016 http://bit.ly/1o4acXX

44 | TIDINGS | SPRING 2016 | 24 HOUR HELPLINE: 0800 328 4257 CA NEWS FROM THE OFFICE CONTINUED FROM PAGE 43, COLUMN 3 Robin Mills, Colostomy Association may not, be a hook long enough to hang to longer rides. It did seem to take me a volunteer, replies: more than one garment. Ski suits with a zip long time to get back to cycling but I’m glad down the front keep trousers off the floor, I stuck with it. However they are difficult to handle if you get too hot. All the best of luck to you. I hope you’re (comfortably) back in the saddle soon. Of course if you can irrigate successfully before venturing forth you will have a Ian Jackson carefree day. I imagine the plug might work, although failure would be too dire to risk. The next best thing is a drainable Skiing pouch which is not difficult to empty and may not need attention until you return at Do you know anyone with a stoma who the end of the day. However, make sure you goes skiing? have a filter that works as if the pouch Helpline Caller balloons falling forwards could blow the Skiing with a colostomy pouch has its seal. advantages and disadvantages, none of them life –threatening but there are some In one chalet I could not understand why quite challenging complications. The one everyone else knew what was going on. advantage, of course, is the fact that you When I asked the chalet girl, I discovered cannot really be caught short, as they say. she was posting notices on the lavatory door where the others could easily see Ordinary skiers have a great fear of being them. She looked really puzzled to hear stricken like this. There are no bushes on that I never looked there. the best ski slopes, so the only thing is to head at speed for the nearest loo and hope I am not a good skier but I love the that there is not a queue. Mountain mountains, the atmosphere, and the ability If you have a question to ask, an restaurants do not have disabled facilities. to enjoy both the thrills, and spills, that you experience or anecdote you’d like to With the thick warm clothing that is often get from skiing. I managed 24 years with a share, or hints and tips to pass on to necessary, accessing the stoma can be a colostomy and only stopped at 84 because other ostomates e-mail of write to the major operation. Snow from boots usually I thought I would not be able get up if I fell. editorial team: makes toilet floors wet so you have to be Robin Mills [email protected] careful not to drop anything. There may, or

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SUPPORT JOSH

Junior Ostomy Support Helpline (JOSH)

L–R: Laura and Jennifer Many of our readers will be aware that hospital. Amazed at meeting sisters who the Junior Ostomy Support Helpline 2 sisters, 0 colons both had pouches, Wendy asked if we (JOSH) is managed by a team of volunteer Our journey to becoming JOSH volunteers would be interested in becoming parents ready to answer any questions began in the year 2000 when at the age of volunteers for JOSH. that a carer or parent of a young 12, Jennifer had her colon removed as a We were both keen to get involved and ostomate may have. result of Ulcerative Colitis and later went on thought it would be a great opportunity to However, two of our volunteers have had to have surgery to create an Ileo –Anal help others going through a similar stomas themselves – both lived with Pouch. Fast forward to 2013 and older sister experience which can often feel very Laura also underwent surgery to remove temporary stomas when they were younger isolating. Having spoken to other pouch her colon, having been diagnosed with and currently live with ileo –anal pouches. patients during our own surgeries, it’s now Ulcerative Colitis five years previously. Laura and Jennifer can not only speak great being able to volunteer with JOSH so Following a year living with an ileostomy, to parents but also any we can listen and support junior patients or Laura had surgery to create her pouch at young callers who their parents. would like to the age of 30. This is how we became 2 The helpline training provided by JOSH has speak to someone sisters with 0 colons.

been brilliant and has allowed us to meet who has been Between the two of us, we now have 15

r years’ experience of living with an Ileo –Anal fellow helpline volunteers. n through the same nio Ju my Pouch and we are yet to meet any other experiences as them. sto t O r o pp ‘pouch siblings’. Do you feel you could benefit from Su e n or li nts re r p pa de Find out about the story l for lad b e ble or speaking to Jenny, Laura or any of the aila wel H av bo e is ith ed Shortly following Laura’s final surgery, we lin n w icat help ldre ded ed is chi of ed Th of am ne . of how Laura and Jenny ers te uch red r d ca . cte e m qui other JOSH helpliners? Then please call ues sele vid s re iss lly pro it i ecia ers hen met Colostomy Association trustee sp nte w ur olu ort e: O nt v upp lin are al s elp both became JOSH p ion ur h 7 ot o em 4–h 25 0800 328 4257 and ask to speak to a 2 4 8 Wendy Hetherington at an event hosted 2 n io 3 iat 4QA soc 1 s RG 0 y A ng om di 0 ost ea uk volu nteers: ol , R . 8 e C eet org th Str n. JOSH parent today. 0 of on io rt d t pa Lon cia H is 95 so JOS se, yas by the stoma care team at our local u Ho om rise st erp olo Ent .c ww w

| WEBSITE: WW W.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 47

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Facebook Group CA Facebook are go...

It’s been a busy few months on the CA transport. OK, plan B – we are leaving A few weeks ago a member had the idea to Facebook support group. Membership from Alicante Airport on Sunday so post their photo – to put a face to their continues to grow, mini meets are taking could pass through Benidorm at name. Many people have a cartoon, or place across the country and we are about 7 –8am in the morning. Details photo of a pet or family as their profile trying to organise a couple of official were finalised and we reset our alarm picture. This may of course be a conscious group meets in the next year or so. for an hour earlier! choice to remain anonymous which is absolutely fine but once one person had As always, our members help each other “We were quite pleased not to have posted a picture the response was whenever they can and a true example of to use the ‘motorway’ from Javea to incredible. Literally hundreds of photos group members coming to the rescue was Alicante, taking the more scenic and, followed as the face to name idea grew. seen when admin Steve Clark helped a in parts, beautiful coast road to Members new, old and those who have member in need while on holiday in Spain. Benidorm. Eventually, we found the never posted before started putting photos Steve writes: right hotel and made contact with our onto the group. It really lifted the spirits of unfortunate friend in need of the “My wife, Cherry, and I were in Spain, many, and even encouraged our own Ian pouches. Not a nice time of day to get visiting my sister, who lives in Javea Daniels, president of the CA to comment, up when you’re on holiday but needs on the Costa Blanca. We had a praising the photos of ostomates living a must. We adjourned to a local bar… normal life. He said: “Congratulations, it’s glorious week, except for the ..at 8am on a Sunday morning! inspirational for those who are about to Thursday, when it was raining but it Coffee, tea and vodka came very undergo surgery and fear life with a Stoma, didn’t stop me from going in the quickly and we had a very convivial so well done”. Group member Shelley swimming pool; I was already wet so half hour before we had to take our Lawes took it a step further by suggesting what did it matter? leave and get to the airport. Although people donate money to the Colostomy “To finish our week we had a family this was my first flight abroad since Association when they post their picture. night at a local restaurant on the my surgery, I have got into the habit She set up a JustGiving page and at the Friday. We had an early start on of always taking plenty of spare time of writing, the amount raised was Sunday morning to travel home, so a supplies with me when I go away. close to £200. So not only did members Saturday shindig was not really Disasters can happen to me in terms come together by sharing photos, they also advisable. of upset tummy, lost luggage or any turned this into a fundraiser for the number of other possibilities. In this Colostomy Association. I feel privileged to “On Saturday morning, I checked the case, I was delighted to be able to be part of such an amazing group! CA Facebook group feed and noticed help a fellow colostomate in distress.” Sara Squire a post that went something like “Help….Panic…I have run out of The CA facebook group really is more than If you would like to join the closed CA pouches!” Then came the punchline: just a place to find answers to stoma Facebook group, search “Colostomy ‘Is anyone in Benidorm?’ Well, we problems. It has become a family, where Association” in your facebook search box, were about 40 –45 minutes away by members will do everything they can to choose the group and when you get to the car so I replied to the post to that help each other, where they become firm group page, click on the join tab and one effect. Unfortunately, on a package friends and can share experiences good as of the admins will add you as soon as they deal in Benidorm, they had no well as bad. can. We look forward to seeing you there. | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 49 CA NEWS FROM THE OFFICE

Colostomy Association Facebook Group hits 4,000 members

The Colostomy Association’s Facebook Within two years, the group had 500 “It is fantastic to see the Facebook Support Group has hit a new milestone members and today more than 4,000 Support Group reach 4,000 members as it reaches 4,000 members. ostomates use the group as a source of – our group benefits from the advice and support. collective information and knowledge The Facebook Support Group is a safe, of our members. welcoming online space where people with Although it may be hard to notice, a lot of a stoma are able to share advice, tips and work goes into managing and moderating “The advice in the group is fast and information with each other. As a ‘closed’ the Facebook group. A team of trained thorough – people can have answers group, posts can only be seen by other Facebook admins ensure that abusive to problems literally in minutes, and members of the group which ensures comments are deleted, that advice given is as we have a lot of international members can feel that anything they post correct and that the group remains a members as our advice is 24 –hours a will be safe and confidential. welcoming space. All information provided day.” is based on experience and no medical The Colostomy Association set up the Want to help us hit our next milestone of advice is provided. closed Facebook group six years ago in 5,000 members? Search for ‘Colostomy September 2009 as the charity felt an Sarah Squire, Colostomy Association Association Support Group’ on Facebook online support service was needed for Trustee and Facebook Group administrator and register to become a member of a ostomates across the UK. said: fast –growing community. n receives

endorsement The Colostomy Association’s dedicated helpline can arrange to be called back by a receive support from the PSNG helpline for parents and carers of children fellow parent or carer or a child with a who perform wonderful work for with bowel dysfunctions – JOSH — has stoma. Callers can be matched with children with a stoma across the received the endorsement of the helpliners whose situation closest mirrors UK. Paediatric Stoma Nurse Group. their own. Our helpliners are then able to “The endorsement demonstrates provide practical and emotional support. The Junior Ostomy Support Helpline was the quality of support our launched by the Colostomy Association The Paediatric Stoma Nurse Group was helpline can provide to parents at the end of 2014 to provide a established in 2005 and has developed into and carers who may be much –needed service for parents and a valuable, proactive independent forum, struggling to bring up a child carers of children with a variety of bowel working closely with industry in research living with a stoma.” dysfunctions and diversions. JOSH has and development. now received the support of the UK’s If you would like to speak main association for stoma care nurses Speaking about the endorsement, to a JOSH helpliner then who work with children. Colostomy Association trustee, Wendy call 0800 328 4257 and The endorsement underscores the need Hetherington, said: request a JOSH parent to for a service like JOSH. Any callers to the “We are incredibly proud to give you a call back. n

50 | TIDINGS | SPRING 2016 | 24 HOUR HELPLINE: 0800 328 4257

SUPPORT YOUNG OSTOMATES

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One of the Breakaway families first found I was going through knowing someone Centre in Burton on Trent. £40 per person, out about Breakaway through reading would understand me and not judge me, includes 3 course meal and wine. To buy Tidings, here they tell us what Breakaway however crazy my questions were, and tickets, please email us. means to them. maybe even help me. We now have friends for life and when going through tough 10th Birthday Family Fun Day on Saturday “I brought in a very withdrawn, scared and times, we have the knowledge that we can 9th July at Beaumanor, Leicestershire. sad child on the Friday afternoon and I just pick up the phone or meet up with Activities may include craft, zip wire, high brought back home a lively, confident and friends who will not look at us like aliens. ropes, cannons, rocket building, bouldering, empowered child on the Monday. That is And that is the amazing gift Breakaway has hide and seek in the cellars, and there will the magic Breakaway creates with its magic given us and for which we are eternally also be an exhibition from all the major wand! The wonderful opportunity for my grateful! Wonderful staff, lovely locations, stoma care manufacturers. Tickets are £5 a daughter to see with her own eyes for superb food and amazing people! What is person and can be booked via the herself that she was NOT the only child with there not to like about Breakaway? That, as Eventbrite link on the Breakaway website. a stoma meant she could drop the huge my daughter said, it has not created its own pressure she was making herself feel she school yet so all children with bowel August Family weekend, from the had to be under all the time because, for diversions could be their usual selves 26 –29th August at the YHA National Forest once, she was not different. She did not without fearing judgement! That comment in Moira, Derbyshire. Cost is £185 per have to worry about people judging her… says it all! Thank you, thank you, thank you!” person, which includes all meals, she did not need to worry about her bag accommodation and activities. Funding may showing, about her stoma making funny Want to help us celebrate be available to those on a low income. noises or smells or about feeling down Email us for a booking/funding form. about her condition. It was a life –changing our tenth birthday? experience for me too as all of sudden I 10 Year Anniversary Gala Dinner on Sue Blackwell could word out any worry, concern or battle Saturday 7th May at the National Brewery Breakaway Trustee

More information Donate online via: Write to us or send a Telephone: donation to: about Breakaway http://uk.virginmoneygiving 01283 240253 Foundation. .com/charity- Breakaway Foundation Email: web/charity/finalCharityHo PO BOX 7982 [email protected] mepage.action?charityId=10 Swadlincote Web: 08990 DE11 1FB www.breakawayfoundation.org.uk

| WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 51 FROM HEALTHCARE PROFESSIONALS YOUR QUESTIONS ANSWERED Dear Nurse Julie Rust RGN. Dip, N. MSc. Clinical Nurse Specialist Stoma/Colorectal Royal Stoke University Hospital University Hospitals of North Midlands NHS Trust

Julie Rust became Tidings Nurse in December 2004. She has answered readers’ letters and e-mails in every issue which has been published since then. We look forward to many more years of Q: I have had a colostomy since 1997 and publishing her very sound advice. given regular cystoscopies to ascertain had little trouble with it. Recently I have Your medical questions about stoma the condition of the bladder. The first had constipation even after eating fruit, care management are always welcome one I underwent was under general and drinking fresh orange juice and and important to us. anaesthetic and I experienced no plenty of water. Can you suggest problems afterwards. However, the last anything else to relieve me of the Questions received by the Editor or two cystoscopies were performed under constipation? Colostomy Association are passed to local anaesthetic and, although the Julie Rust RGN. Dip, N. MSc. CNS actual procedure was completely A: Even with a colostomy you can suffer Stoma/Colorectal to review and answer. painless, as soon as the local from constipation. You are doing all the Answers are published in the next issue anaesthetic wore off I experienced correct things: increasing your fluid of Tidings. excruciating burning pain which lasted intake, eating fruit and vegetables and more than two hours. The last time this drinking fruit juices. If you are still removal. happened I was admitted to hospital struggling, you can also use laxatives after the procedure and given such as Lactulose, Senna, Fybogel or My question is concerning the ‘Radiation intravenous painkillers. The professionals I believe are somewhat Movicol and many others. It may be Cystitis’. Firstly I am interested to know worth speaking to your GP for confused as to why this has happened. whether, and to what degree, the suggestions but do please continue with Obviously I am very dubious about radiation cystitis is likely to deteriorate. I drinking plenty of fluids and a having this procedure repeated. I am have been told that it is gradually well –balanced diet. interested to know whether anyone has destroying the good tissue in the experienced the same reaction. bladder hence the bleeding and clots. I Q: Although I had my bowel operation nearly 10 years ago, about two years cope with issues when I know what I am I look forward to receiving any feedback ago I started suffering with radiation likely to face in future. I am not negative, you can offer. cystitis due to the extreme amount of in fact very positive. I do know that some radiation I received. I had 33 sessions of sufferers end up with a urostomy due to A: This is a very complex query and I have radiotherapy which I believe is not the this condition and wonder whether there to admit I am probably not the most norm but the professionals at the time is any particular time factor involved in appropriate person to answer this. I were trying to eradicate the tumour the deterioration. would suggest sitting down with your without surgery. However, it wasn’t consultant to see if they can give you any successful and ultimately I ended up Also, another problem I am experiencing timescales with regard to the with an end colostomy and rectal with the radiation cystitis is that I am deterioration of the condition and the 52 | TIDINGS | SPRING 2016 | 24 HOUR HELPLINE: 0800 328 4257 FROM HEALTHCARE PROFESSIONALS YOUR QUESTIONS ANSWERED potential for surgery to remove the involves the surgical removal of the Use of Additional Products bladder if that is what you have been sigmoid colon and upper rectum (the informed could be a solution. The lower section of the large bowel) which Many companies not only produce regular cystoscopies will be undertaken is situated in the left hand side of the pouches for use by ostomates but also a to assess the condition of the bladder abdomen. The lower rectum is then wide variety of additional products. and the rate of deterioration which will oversewn and left in situ as a rectal ultimately direct the treatment plan and stump and the descending colon is timescale. I can understand your These include such things as: brought to the surface of the abdomen concerns with regards to the planned • Adhesive remover in the form of sprays as an end colostomy. This can be cystoscopies in the future following your or wipes. They help to ease the performed for several reasons including experience last time. I have to admit I adhesive flange away from the skin cancer and diverticular disease. Some am unsure as to why this should have without causing trauma. occurred, possible trauma to the urinary patients may find that they can have the • Seals in a variety of sizes and system or infection may be a cause but I stoma reversed but others are informed would hope that if your surgeons are that it will be a permanent colostomy. n thicknesses. They help to smooth skin aware of the problems they would have which has creases, to absorb fluid a plan in place to try to negate any secreted from skin which is sore and similar problems in the future. I wish you wet, and are used to provide security. well and am sorry I am unable to • Paste which comes in a tube. It can be provide definitive answers to your used to fill skin creases and ‘moats’ queries. around the stoma which will help adhesion. Q: In February 2015 I had polyps removed from my bowel which turned out to be • Barrier film in the form of sprays, wipes cancerous. I then had an operation on or creams. They provide a protective my rectum called a Hartmann’s and I barrier for those with sensitive or am having a few problems with my irritated skin. stoma which my stoma nurse is sorting out for me. • Deodorants which may be drops, gels or granules for use inside the pouch. However, what I would like to know, • Air Fresheners. These are used when please, is what in fact is a Hartmann’s emptying or changing the pouch to procedure operation and how is it done? disguise the odour. Most patients find Hope you can help me. that using the usual air freshener in A: A Hartmann’s Procedure can be their bathrooms is often enough. performed either open (laparotomy) or • Flange Extenders, which are adhesive through keyhole (laparoscopic) and Hartmann’s procedure strips. They are used around the flange so that the adhesive surface is Reply to a letter about blockages caused by adhesions which appeared on the Dear increased in size to give added security. Nurse page in the Winter issue of Tidings. Often these products i.e. adhesive I experienced exactly the same about 18 Julie Replies: I am glad that you remover or barrier wipes, flange extenders or pouch deodorants are given out as months after my bowel surgery and after managed to obtain a definitive diagnosis being admitted to hospital with blockages samples. However, as not all of these are of sub –acute obstruction, and yes you are on a regular basis (around six times or so) essential or suitable for all patients, it is correct that a change in diet can influence and given exactly the same treatment, a advisable to contact your stoma care very knowledgeable stoma nurse the obstructive symptoms. I would advise nurse to see if there is a Clinical Need for diagnosed sub –acute obstruction and said all patients who develop symptoms such the use of the product. n that I would benefit from a diet without as this to seek medical advice in the initial fibre. Up until then I was having regular period to ascertain what the problem is, Editors Comment high fibre cereal in the mornings plus as self –diagnosis initially is inappropriate brown and multi –grain bread. All very Have you got a much a NO, NO. as the cause may be more serious. Once medical question or a query you are aware of the cause of the about stoma care management Also I was advised to peel all fruit, eat no symptoms and are experienced with for Julie? fruit or vegetables containing seeds and to identifying them, as you are, then placing drink plenty of fluid. This absolutely yourself on fluids only can often solve the If so, write in and tell us: worked and I have now been on the diet problem. As with anything, sometimes it for seven years with no blockages which The Editor have required a hospital visit. I do works for one patient but not for others Colostomy Association occasionally realise I have eaten but with medical support it is always Enterprise House something which has caused a slight worth trying different solutions. Thank you 95 London Street blockage but can normally clear this on for your input. It is always good to get Reading RG1 4QA my own by adopting nil by mouth and plenty of fluids for a day. I do hope this ideas from patients, who after all are the or e-mail your query to: helps as I really believe it is the solution. people who live with the stoma 24/7. n [email protected]

| WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 53 YOUR LETTERS AND E-MAILS

Readers’ writes

Do you have a story to tell, experiences or concerns to share with other ostomates, issues to raise? Maybe you have comments and suggestions about Tidings. Write in or e-mail us today. The editorial team looks forward to hearing from you. Rosemary Brierley

Dear Editor continued for 24 years. She could hardly well as a stoma pouch. Many people do A friend who has a colostomy passed your believe the advent of the stoma pouch – not realise what a couple have to go magazine on to me and suggested I possibly in the 1960s if I remember and to through and your article at least made us should write to you about my be told by her GP that the daily “wash out” realise we are not, after all, on our own. was no longer required. grandmother. In June 2015 my wife had a major My grandmother was born in 1898 and in My grandmother died in 1987 at the age of blockage and had to have another 1932 after having a hysterectomy she was 89 having had a colostomy for 55 years. In emergency operation. If it was not for the given doses of radium. Sadly the radium the 1930s I expect it was a very rare expertise of the staff at Kings Mill Hospital burned her bowel which resulted in operation and my grandmother did well to she would not be here now. The survive a very real near death experience. having a colostomy on 19 October 1932 – blockages have now cleared, but my wife I believe at Mount Vernon Hospital in I am amazed at how common this still has a four inch open wound on her Northwood. She was extremely ill but was operation is now as I know four people in stomach which is awaiting plastic surgery. eventually discharged from hospital on 15 my immediate area who live with a stoma. But Hey Ho, we both have got to keep our December 1932 weighing only 40Kg (6st Obviously no one wants to have a condition spirits up so don’t think just because you 4lbs). I know all this because I have her which needs a colostomy but I felt that my have a stoma that’s the end. It could be diaries! grandmother’s story might give heart to worse. someone who is having trouble getting to There were no stoma bags in those days grips with the situation. On behalf of my wife and she had to wear a surgical belt with a Mr A Elliott plastic cup to protect the stoma. She had Yours Sincerely a copious supply of clean rags to wear in Linda Jackson Dear Editor case of accidents! I am an avid reader of the Tidings Dear Editor magazine. I was very interested in the As a child – I was born in 1945 – I I was very impressed with the article A article on Page 35 submitted by Mack and remember her having to wash out the Carer’s Perspective in Tidings issue 40. My his wife Dian in your last issue. I agree stoma every day, syphoning water into her wife had a stoma about six years ago now, entirely with Mack’s comments since I am body to flush it out. She had to do this all an emergency operation, so very a carer for my wife. Unfortunately she had through the war – air raid or no air raid. unexpected. It was not due to cancer, but cancer problems four years ago which her large bowel had died due to lack of I can remember her having to go to resulted in extensive surgery. It has left her oxygen. So you can imagine the way she London regularly to be measured for her with a urostomy, colostomy and a vaginal felt when she came around from the belt and a Dr Donaldson in Riding House reconstruction which resulted in removing anaesthetic. It is not reversible so we both Street features regularly in her diaries. Her muscles from the legs to build up the have had a lot of changes to endure. last visit for an annual check –up was body. She is now living a normal life but March 1956 at Charing Cross Hospital Unfortunately she has been left with a limited in walking which obviously means (then off The Strand, I believe). This had massive hernia and has to wear a corset as we have had to curtail our hobby of

54 | TIDINGS | SPRING 2016 | 24 HOUR HELPLINE: 0800 328 4257 YOUR LETTERS AND E-MAILS Readers’ writes

short/long distance hiking. We have now colostomy. However, I’ve always considered Dear Editor changed our life –style and holiday in UK that carers are more or less a ‘forgotten I just wanted to make contact to say how cottages and visit various places. army’, who save the NHS and social services precious Tidings magazine has been to considerable financial outlay, so I think The Colostomy and Urostomy me, in particular the extremely useful media attention is always welcome, both Associations all mention that this type of articles recently about irrigation. Although on TV and in print! surgery should not change your life and I had excellent medical care, it was only should not restrict your requirements such Everything Mack has experienced, mirrors after I discovered the association and the magazine just over a year ago that I found as holidays etc. But we are very restricted mine, and my heart goes out to those that out about all sorts of things which my because in our experience there is no are perhaps alone, or do not have a family nurses had not told me about. insurance company prepared to offer us member to assist, especially when adjusting any form of insurance for UK or abroad to their new way of life. The result of this is that I have finally been even though my wife is free of cancer as allowed to start irrigation, and am finding I am also grateful to Diane, the specialist agreed by all the specialists. Maybe you it most helpful, especially in my working nurse, who has always listened to my can give us some advice in this direction. life. This would not have come about queries/concerns, and offered advice, We have tried the insurance companies without your magazine. which were specified by the Macmillan recognising that it has been a team effort nurses. by us all from day one. Thank you all very much. Regarding Mack’s comments, he does not So, thank you for publishing Mack’s story! CG mention anything about the fear of the Regards Dear Editor disease returning. I find this is one of the AG I read with interest James’ story, You Only main problems you have to come to Live Twice. My own experience in 2008 terms with and obviously try to rule out Dear Editor was very similar, except that I was on a the problem. Have you found this is the I read your magazine from cover to cover coach tour in America when I felt situation regarding most other cancer and it has been more than helpful so I ‘something go’ in my lower stomach area. patients? thought I would tell you why and send you I experienced all the same symptoms as John Manson a donation which I have intended to do for James, but managed to get home two some time. days later, and went straight to the Yes, the fear of cancer coming back is very I started to see streaks of blood in the doctors. How I managed the plane common and was highlighted in an journey from New York I don’t know. article by Beating Bowel Cancer’s mucus being passed by the remaining piece specialist nurse in the autumn 2015 issue of bowel left after my colostomy was I was examined and given anti –spasmodic of Tidings (P49). While treatment is formed due to bowel cancer. This was in pills for IBS and a stomach upset. I ongoing it feels as if something is being February 2014. My cancer nurses felt it was survived another week, not eating or done to stop or treat the cancer. However, normal and were not worried. Six months hardly moving, before my husband almost when it is over it may feel that nothing is later at the autumn check –up still no carried me back to the doctors. Fortunately being done and the cancer could return. concern. a different young doctor realised I was seriously ill and sent me straight to A & E. This is a very natural reaction. This fear However, by December it was much heavier This was a Friday. I had a CT scan on and anxiety usually settles over time; not and smelly and your magazine carried an Saturday and finally had my operation on only does the worry usually lessen but article explaining that something could be also the actual risk. Sunday – six hours in surgery and four done about it. I took the magazine to my hours in recovery – before going back to To speak to other people who experience doctor after Christmas but the first the ward at midnight. similar feelings visit the charity’s online appointment she could get me at the forum at: hospital was 23 April. By now I was very The surgeon informed me that he had www.beatingbowelcancer.org/forum or worried about secondary cancer. After saved my life and told me I had a for any other concerns about bowel several months of biopsies and then an MRI diverticular abscess which had burst, cancer contact the Beating Bowel Cancer scan in July 2015 (18 months of worry) I causing perforation of my bowel and helpline on 020 8973 0011 or email had an operation and a growth was peritonitis. A large portion of my bowel had [email protected] removed. Fortunately it was not cancerous. been removed and I only had a 4cm rectal I am waiting for a second operation to stump left. Nevertheless I was determined Dear Editor make sure all was removed. right from the start that if a reversal was My wife is a member of your association, possible I would go for it. My surgeon told and I always look forward to reading No more mucus discharge, no more smell. me he would review the situation later and Tidings. I was pleasantly surprised to see Thank you Tidings Magazine. This may be see how I felt then. Luckily I managed my Mack’s story about being his wife’s carer. of help to someone else so I felt I had to stoma very well, with relatively few write to you for that reason also. problems, but I did not change my mind I am in a similar position, although now about trying for a reversal. taking a less active role as my wife has Yours sincerely become more adept at managing her JO CONTINUED ON PAGE 57, COLUMN 1

| WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 55

YOUR LETTERS AND E-MAILS

ant We w Readers’ writes ar to he you from

Moved by something you’ve read in CONTINUED FROM PAGE 55, COLUMN 3 sufficient into the pouch has helped this issue of Tidings magazine? Do you My surgeon said it would be very difficult enormously. Not only has it sorted out the have an issue that needs addressing in view of the short rectal stump pancaking, but it has also made the whole or an experience you’d like to share remaining, but I was determined to go process cleaner and it makes the pouch with our readers? Please send in an ahead, so he put me on the waiting list, last much longer. I would just add that I email or letter for our Readers’ Writes and 17 months after my initial operation use a drainable pouch and the opening at section. he successfully reversed the Hartmann’s. I the bottom should be closed first so that was told it would not be as traumatic as the oil does not just flow out. The Colostomy Association regularly my last operation, and I would recover David from Essex receives correspondence from much quicker, as this time I went into supporters across the UK who would hospital feeling well, and this proved to be Dear Editor like to share their thoughts, experiences correct. I was discharged after a week, Thank you for putting adverts in Tidings . I and personal tips. thrilled that I no longer had a stoma, saw the one from Suportx and I emailed although I was aware of the problems that them to see if I could have a support All letters and emails are considered by can occur after reversals. I think I have garment. I was given a time and day and the Editorial Team who decide which will been fortunate that my need to visit the the lady came to my home and saw I had be published in Tidings magazine. loo has only increased a little, due to not a hernia around my prolapsed colostomy having much rectum left, but that is all. If you’d like to send in something for and my urostomy. She measured me up consideration by the Editorial Team for I don’t know if this is a common problem, and applied for a prescription from my inclusion in Readers’ Writes in a future but my main concern now is a large doctor and two weeks later I was sent the edition of Tidings, then please send an incisional hernia around the site of my hernia belt to try. I had to put a sticker email to: stoma. In 2014 my surgeon again where my urostomy stoma was and I sent reluctantly cut me open to repair the a pouch so the flange could be measured. [email protected] hernia, but unfortunately he was unable Now I have my hernia belt and it is so to do so due to excessive adhesions or a letter to: caused by my previous surgery. I think, comfortable. As the day wore on my The Editor therefore, this is something I will have to prolapsed stoma used to get so big it hurt Colostomy Association live with. and I went to bed to make it relax and go small. I no longer have to do this as the Enterprise House However, I have never regretted having belt pushes it in for me. 95 London Street my reversal, and I would definitely Reading Kind regards recommend it if it is medically possible. RG1 4QA Margaret Florey Kind regards Please make sure you include your full JS Before acting on suggestions from other name and contact details so we can ostomates you are advised to check with Some readers may remember the story, a doctor or stoma care nurse that this contact you. Additionally, please ’You only Live twice’ written by James course of action is suitable for you. mention whether the Colostomy Sharman and published in Tidings (T36). Thank you for your letters and e-mails. Association has permission to publish Space permitting, we will print your He said that there had been few your letter in Tidings magazine or not. A occasions where having a stoma had contribution in the next issue of Tidings or we may hold it over for a future issue. consent form will be sent for you to been an issue and he was going to complete before any publication. postpone the decision about whether or To contribute to the Readers’ Writes page: not to have his stoma reversed for 12 e-mail: months while he considered the best [email protected] course of action. Now a year later he says or write to: that he plans to have a reversal at some The Editor Were you involved in the Colostomy time in 2016 but needs to fit it in around Colostomy Association, Enterprise House, Welfare Group in the 1960s? football and work commitments. 95 London Street, Reading RG1 4QA Do you have any interesting stories or Dear Editor Please indicate if you are willing for us to print your full name (or just your first name). In the anecdotes from that era? You may have had this suggestion already, interest of confidentiality, if you do not give us but as a fairly new ostomate I was advised permission we will publish only your initials. We’d love to hear from you so that we by my nurse to use baby oil in the pouch Editing may be required for reasons of clarity can put together a special feature in a or space. to help with pancaking. Just squirting future edition of Tidings!

| WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 57 NOTEBOOK HELPFUL OSTOMY SUPPORT GROUPS & ORGANISATIONS Helpful Ostomy Support Stoma Care Patient Groups & Organisations Open Day event

• IA The Ileostomy and Internal • Crohn’s and Colitis UK dates Pouch Support Group Tel: 0845 130 3344 Freephone: 0800 0184 724 (Mon-Fri 13:00-15:30 and 18:30-21:00) For a comprehensive www.iasupport.org www.crohnsandcolitis.org.uk list of Patient Open Days • UA Urostomy Association • IBS Network (formerly: The Gut Trust) events, visit the CA website. Tel: 01889 563 191 Tel: 0114 272 3253 www.urostomyassociation.org.uk www.theibsnetwork.org Listings are updated • IOA International Ostomy Association • Bladder and Bowel Foundation (B&BF) throughout year. www.ostomyinternational.org Formerly Incontact and Continence Foundation • Junior Ostomy Support Helpline (JOSH) General enquiries: 01536 533 255 If you are not online 24 Hour Helpline: 0800 328 4257 Web: Email: www.bladderandbowelfoundation.org contact CA on: [email protected] • Bowel Cancer UK • Stomadata Tel: 020 7940 1760 0118 939 1537 to find out if www.stomadata.com Email: [email protected] there is an event near you. Web: www.bowelcanceruk.org.uk • Macmillan Cancer Support Tel: 0808 808 00 00 • Beating Bowel Cancer UK Note: The Colostomy Mon - Fri: 9am - 8pm Tel: 08450 719 301 (Lo Call rate) Association full contact www.macmillan.org.uk Web: www.beatingbowelcancer.org details can be found • Mitrofanoff Support • Gay & Lesbian Ostomates (GLO) on Page 5. Tel: 01202 937 530 formerly The United Ostomy Email: [email protected] Association www.mitrofanoffsupport.co.uk Web: www.glo-uoaa.org

58 | TIDINGS | SPRING 2016 | 24 HOUR HELPLINE: 0800 328 4257

DONATIONS HELP US MAKE A DIFFERENCE R F e R g E u E la l r a d p o e n l a p t in not actual size io Thank you for your support Regular donation n – s w o i f th Every donation makes a difference – your support can help change lives across the UK. With your help, £ 1 a thousands of adults and children living with a stoma will be able to receive invaluable support through 5 ll the Colostomy Association. n o e r w Please fill in this form to make a Regular donation by Banker’s Standing Order. Check your details are m o correct then return the completed form by post to: Colostomy Association, Enterprise House, 95 London r Street, Reading, Berks RG1 4QA. Telephone: 0118 939 1537 if you have any queries. e

Note: My Details: Title: Name: Surname: Please ensure

that we have Address: t s n a l your correct r

u s t

contact details: k e c r

full name, address o

Postcode: t n s

and postal code e e h l i telephone number Telephone (home): Mobile: t

, h thank you t w c

Email: e e r l r b o a c l i

a Regular donation: I wish to make a regular contribution by Banker’s Standing Order to the e r v a a

Colostomy Association in support of the charity and its ongoing work. I have completed the Banker’s Standing r s l e i f f

Order Form below (Please tick). a t O

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r 1 0 Instruction to your Bank/Building Society to pay by Banker’s Standing Order u 2 o

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Name(s) of Account holder(s): m r o o r f f

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I would like to make a regular donation* of £15 £20 £25 £50 or other amount (please state) £ e n i s

l , l e monthly quarterly annually starting on the 1st 15th 25th of month: year: i f r

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thereafter until further notice. (Please cancel any previous standing order in favour of this beneficiary). a r e l o

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state your donation amount in words: d r o

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Please pay: NatWest Bank, Market Place, Reading, RG1 2EP g e n d i r Account name: Account No: Sort code: d C.A. Ltd 88781909 60-17-21 O n

a g t n s i Name: (IN CAPITALS) d a i n v

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Signature: Date: / / 2016 . t e t u S

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Thanks to the Gift Aid scheme - we can reclaim money on your donation from the government. For every g a o e T h R

pound you give us, we can claim an extra 25p. For example, a donation of £15 becomes £18.75 with Gift Aid, t

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at no extra cost to you. c i e n t n o o

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I want to Gift Aid my donation and any donations I make in the future or have made in the past four years. i

o c i o r o I am a UK taxpayer and understand that if I pay less Income Tax and/or Capital Gains Tax than the amount of Gift t Thank you s p t

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Aid claimed on all my donations in that tax year it is my responsibility to pay any difference. n A

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Year of operation: Urostomy R p c

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(NB: The optional information is not mandatory but will help the CA learn more about you – it will not be passed on to third parties) s d i A n

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Registered Office: Enterprise House, 95 London Street, Reading RG1 4QA Registered Charity No: 1113471 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 59

DONATIONS HELP US MAKE A DIFFERENCE

Thank you for your support Single donation

Every donation makes a difference – your support can help change lives across the UK. With your help, thousands of adults and children living with a stoma will be able to receive invaluable support through the Colostomy Association.

Please fill in this form to make a Single donation. Check your details are correct, then return the completed form by post to: Colostomy Association, Enterprise House, 95 London Street, Reading, Berks RG1 4QA. Telephone: 0118 939 1537 if you have any queries. u o y

My Details: Title: Name: Surname: k n a

Address: h t

- Note: n o

Please ensure i t

that we have Postcode: a i your correct c o

Telephone (home): Mobile: s

contact details: s A

full name, address,

Email: y postal code and m

telephone number. o Optional Information: Date of Birth: Stoma Type: Colostomy t Thank you. s o l

Reason for your stoma: (Please tick) Ileostomy o C

e h

Year of operation: Urostomy t

(NB: The optional information is not mandatory but will help the CA learn more about you – it will not be passed on to third parties) o t

e g a p

Single donation: I wish to make a single donation to the Colostomy Association in support of the charity and its s i h t

ongoing work. I have completed the Form below (Please tick), n r u t e r

n

Single donation/gift: a donation of £15 (or more) will help cover the cost of all our patient services e h t

, t c e r (Please tick.) Yes I would like to make a single donation/gift of £15 £20 £25 £50 or r o c

other amount (please state) £ to the Colostomy Association e r a

s l i a t

I enclose my cheque/postal order form made payable to the C.A. Ltd and attach the completed Donation e d

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Form in its entirety. u o y

Yes, I require a receipt (Please tick). k c e h c

Single donations from individuals, groups and fundraising events are very welcome and greatly , m appreciated. So please keep them coming, no matter how small. Just £15.00 (or more) will help r o f cover the cost of all our patient services. e h t

n i

l

Thank you for supporting CA – with your help – we can change lives! l i f

e s a e l P .

Thanks to the gift aid scheme - we can reclaim money on your donation from the government. For every pound . .

you give us, we can claim an extra 25p. For example, a donation of £15 becomes £18.75 with gift aid, at no n o i

extra cost to you. t a n o d

I want to Gift Aid my donation and any donations I make in the future or have made in the past four years. e l

Thank you I am a UK taxpayer and understand that if I pay less Income Tax and/or Capital Gains Tax than the amount of Gift g n Aid claimed on all my donations in that tax year it is my responsibility to pay any difference. i

for your gift s

a

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Signature: Date: / / 2016 a m

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Registered Office: Enterprise House, 95 London Street, Reading RG1 4QA Registered Charity No: 1113471

60 | TIDINGS | SPRING 2016 | 24 HOUR HELPLINE: 0800 328 4257 AROUND THE COUNTIES REACHING OUT TO GIVE SUPPORT

Coventry Stoma Support Support Groups are places where people can share personal stories, express emotions, and be heard in an atmosphere of acceptance, understanding, and encouragement. Participants share information and resources. By helping others, people in a support group strengthen and empower themselves.

Martin Robbins & members of the Coventry Stoma Support Group with surgeon, Mr Kashi, who gave a presentation on parastomal hernias at their recent Open Day

I believe that ongoing support is most next few months. As issues arose I now had first Wednesday of each month was important in helping ostomates to accept some contact for help in my rehabilitation. decided upon. Next I had to decide on their condition and get their lives back to It was whilst talking to someone at the times, and as I was still working it would normal. Colostomy Association that support have to be in the evenings. I therefore set a groups were mentioned. Again I looked My story goes back five years, to a diagnosis time of 7:00pm to 9:00pm. So now to sort around my area, but there seemed to be of bowel cancer and subsequent surgery, out the venue; I had looked round my area nothing or nowhere that ostomates could and ultimately a permanent colostomy. and, as I had a link with the local church, I go and talk with each other about how After the surgery and other hospital approached the vicar. After discussing my having a stoma was affecting them. admissions for complications I looked proposal, he kindly offered me a room around for support in my local community It was at this point, about six months after within the church hall at no cost, and the and, although the local hospital and stoma my surgery, when I was getting back to use of the kitchen so that light refreshments nurses were excellent whilst in hospital, the some sort of normality that I considered could be prepared for the evening. ongoing support was very fragmented. I did setting up a support group in my local area. To promote the group, a leaflet was have contact with the local district nurse It was quite a commitment. I spoke at designed and produced with the help of and also a Macmillan nurse, but contact length with Jackie Dudley at the Colostomy with other ostomates was limited to one Association who gave me lots of Jackie at the Colostomy Association, and person in my area. However, his colostomy information, promised help with producing then I produced copies on my computer. I was reversed so his ongoing situation was a leaflet and above all gave me the distributed copies to the hospital, local quite different to mine. encouragement to undertake this project. health centre and local chemists. Sometime during the first few months I After making the decision to go ahead, I So finally on the first Wednesday in found the Colostomy Association, after then decided that meetings would be held November 2011 I started the Coventry being given a copy of Tidings magazine. I monthly. This was quite a difficult decision, Stoma Support Group. I deliberately used can’t remember who gave it to me, but it but I felt that it was necessary for ostomates the word Stoma having learned, both for completely changed my outlook over the to keep in touch on a regular basis. So the CONTINUED ON PAGE 63, COLUMN 1 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 61 CONNECTIONS

Stoma care nurses, if you would like to promote Marketplace your Stoma Care Department, its services and events for FREE, then just get in touch; Contact – advertise your events • messages • services here [email protected]

Salts Medilink Event CliniMed Event (Mariners Suite) Holiday Inn Plymouth, Hilton Hotel , Edinburgh Airport, Lancaster Armada Way, Plymouth PL1 2HJ Suite, EH28 8LL Apr 16th 2016 – 10:00am – 12:30pm Apr 23rd 2016 – from 2:00pm Tel: 0800 626 388 Tel: 01628 850 100 Coloplast Event CliniMed Event Kaim Park Hotel Expanse Hotel, North Marine Drive, Glenavon Suite, 17 Edinburgh Road, Bridlington YO15 2LS Edinburgh EH48 1EP Apr 26th 2016 – from 10:30am Apr 18th 2016 – 1:30pm – 3:30pm Tel: 01628 850 100 Tel: Karen Sutcliffe [email protected] Respond Open Day Coloplast Event Double Tree Hilton, Wingsway West, Salts Healthcare Open Day Aylsetone Leisure Centre Kingsmill Hotel, Culcaback Road, Dundee DD2 5JT 2 Knighton Lane, Leicester LE2 6LU Inverness IV2 3LP May 7th 2016 – TBC Apr 20th 2016 – 11:00am – 2:00pm Apr 13th 2016 – 11:00am – 2:00pm Email: Email: [email protected] Tel: Stoma Care Team 01233 216 505 [email protected] Walsall Manor Colorectal Open Day Cambridge University Hospital Annual Open Day Medway Trust Coffee Morning for Patients The Hexagon – The Frank Lee centre, King Charles Hotel, Gillingham, Manor Learning & Conference Centre Addenbrookes Hospital Kent, ME7 5QT (Route 301) Hills Road, Cambridge May 17th 2016 – 10:00am – 2:00pm Apr 14th 2016 – 10:00am – 12:00noon Apr 23rd 2016 – 10:30am – 2:30pm Tel: Fiona Anscomb Tel: Stoma Care 01922 721 172 Tel: Stoma Care Team 01233 216 505 01634 830 000 ext 3636 Stoma Care Open Day Stoma Care Open Day Friarage Hospital Richmond Hall, Princess Street, Tingewick Hall, John Radcliffe Hospital, Mowbray Suite, Golden Lion Hotel, Rochdale OL12 0JR Oxford Northallerton, DL7 8PP Apr 14th 2016 – 10:00am – 3:00pm Apr 23rd 2016 – 10:30am – 1:30pm May 24th 2016 – 11:00am – 2:00pm Tel Abigail Kershaw 01706 764 267 Tel: Stoma Care Team 01865 221 839 Tel: Stoma Care Team 01609 764 620 Beating Bowel Cancer Patient Day 2016 Wessex Stoma Support Group Oops Support Group (Middlesborough and Redcar and Cleveland Area) The Royal College of Surgeons of England 10th Anniversary Open Day, 35 –43 Lincoln’s Inn Field, Gisborough Hall, Guisborough Wilton Community Centre, Wilton, London WC2A 3PE (The Drawing Room) Salisbury SP2 0DG Apr 16th 2016 – 9:00am – 5:00pm Jun 7th 2016 – 1:00pm – 3:00pm Apr 23rd 2016 – 10:00am – 4:00pm www.beatingbowelcancer.org/patient-day-london-2016 Tel: Julie Morrisroe 01287 284 113 Tel: 01722 741 233 Email: [email protected] Oops Support Group (Middlesborough Respond Healthcare Roadshow Coloplast Event and Redcar and Cleveland Area) The Doubletree by Hilton, Future Inn, Hemmingway Road, Dorman Museum, Middlesborough Kingsway West, Dundee DD2 5JT Cardiff, CF10 4AU (Education Room) Apr 16th 2016 – 10:00am – 3:00pm Apr 23rd 2016 – 2:00pm – 4:00pm Oct 4th 2016 – 1:00pm – 3:00pm Tel: 0800 220 300 Tel: 07770 494 715 Tel: Julie Morrisroe 01287 284 113

Designed by Ursula Naish Ursula Naish designs and produces pouch covers and waterproof mattress and wheelchair covers. As Secretary of the UA Kent Branch she For further information please Contact – offers this service to raise funds for her Ursula Naish, 9 Oast Meadow, Willesborough, Ashford, Kent TN24 0AS local group. Tel: 01233 640 863 Email: [email protected]

62 | TIDINGS | SPRING 2016 | 24 HOUR HELPLINE: 0800 328 4257 AROUND THE COUNTIES REACHING OUT TO GIVE SUPPORT

CONTINUED FROM PAGE 61, COLUMN 3 As time went by there was a gradual On the 20 November 2015 the Open Day myself and from the Colostomy increase in the numbers attending the meeting took place at the Coventry Rugby Association, that there are very many monthly meetings and it became clear on Club and seven stoma appliance issues that affect people with ileostomies more than one occasion, that individuals companies attended. Two stoma care and urostomies as well as colostomies were getting a real benefit from meeting nurses also came along, one from because we all have a stoma. I am glad to other ostomates. In fact a lady who was Nuneaton and one from Coventry. The latter say that this decision has in the long term very reluctant to venture out of her home, was instrumental in arranging for a senior been proved to be the right one. is now a regular member, and has told us colorectal surgeon from Coventry University that the meetings have really helped with Hospital, to present an excellent, interesting The very first meeting was attended by just having a better understanding of her and at times amusing presentation on two ostomates and, as it turned out, one of medical condition, and how to cope with it parastomal hernias; their prevention, and them was someone who became a good on a daily basis. That is why I believe it is so repair. This was undoubtedly the highlight friend, and was present at almost every important to have regular group meetings. of the Open Day, and our thanks go to Mr meeting for many years. I later found out Kashi, who I think impressed all of us with that he was a volunteer for the Colostomy Having a stoma can be the result of many his commitment to furthering the Association. He also introduced me to conditions, not only bowel cancer. It may be awareness of and importance of the irrigation which I took up later. necessary to treat ulcerative colitis, Crohn’s management of parastomal hernias. I am Unfortunately he sadly passed away last disease, diverticulitis and other bowel pleased to say that the day was a success, year, but I will always remember him for his problems. I did find it strange when talking and the feedback from both the stoma encouragement and help in promoting the to some members that, due to an companies and ostomates was very group and in raising awareness of ostomies emergency procedure, they were in fact not positive. and the work that was being done by the actually aware of what type of stoma they Colostomy Association. had! Again another good reason for good The Coventry Stoma Support group, with communication within a support group. the help of the Colostomy Association, will When I made the decision to start a support continue to support all ostomates, not only group I also decided that the objective was As the group has been running now for in our local area but also nationally, and to provide a social, informal atmosphere about four years, it has built up hopefully we can help them with where colostomates, ileostomates and considerably, so that between 12 and 18 reassurance, understanding and urostomates their partners and friends members turn up on most meeting nights. encouragement to continue living and could meet to share stories experiences and Sometimes it can become a somewhat enjoying life to the full. emotions. Although it is not a medical noisy affair, with different people talking group, we do from time to time arrange amongst themselves about differing Martin Robbins visits from stoma care nurses and invite subjects, but this adds to the openness and guests from ostomy supply companies. sociability of the evening. As time has gone on, we have made quite a few new Over the first few months the numbers friendships. It seems that with all ostomates varied but in general were a little Thank you to Martin and members of together we talk more freely and openly, disappointing, as on average only five or six the Coventry support group for donating and this then gives us more confidence and people were turning up on meeting nights. £255.00, the amount raised at their helps to supress some of the worries and This gradually started to improve, and in the Open Day, to the Colostomy anxiety about having a stoma. second year we entered a team made up of Association. ostomates, friends and relatives into the During the autumn months of 2015, I local Walkathon. We all turned up in discussed with the group the possibility of The success of the Open Day also specially commissioned tee shirts having an Open Day for ostomates in generated local publicity and the group promoting the group, and not only did it Coventry during November. We agreed that has now grown, so the current meeting give us all a real lift, but we were able to it would be best to have a focal point or place is too small and it has been make quite a good donation to the subject, and chose parastomal hernias as necessary to hire a larger room in Colostomy Association. We even had this was a topic on most ostomates’ minds. premises nearby. comments from members of the public, I then set about finding a local venue, and The next meeting will be on Wednesday mostly asking what we were representing. contacting various stoma appliance 4 May. For more details contact Martin It did at least get our group and the manufacturers and supply companies to on 07947 385 643. Colostomy Association noticed. offer them some participation on the day.

If you would like to see your support group featured here, please telephone the Editor on: 0118 918 0500 or send your article and photos by post to: Editor, Colostomy Association, Enterprise House, 95 London Street, Reading RG1 4QA or if you prefer email your article and photos to: [email protected]

| WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 63 SUPPORT GROUPS IN YOUR COUNTY E

Support Groups are places where people can share personal stories, East Midlands express emotions, and be heard in an atmosphere of acceptance, Newhall Stoma Support Group understanding, and encouragement. Participants share information Diana Manning: 0128 354 1311 or and resources. By helping others, people in a support group strengthen Helena: 0793 233 1850 and empower themselves. Essex Connect Lin Hart 0127 950 5273 Mid Essex Stoma Support Group Stoma support groups “Paul Foulger: 0124 522 4374, Jeanette Johnson: 0137 651 1862” in your county N.E.S.S (North Essex Stoma Support) Secretary: Brian Waller: 0120 654 0449 Optimistic Ostomates Carol Booth: 0170 238 5510 or Angela Cleveland Taylor: 0170 238 5509 England Oops Group Redbridge Ostomists Club Julie Morrisroe/Carol Younger: 0128 Stoma Nurses - Chris/Lisa: 020 8970 728 4113 8321 B Co. Durham STEPS Bishop Auckland Stoma Care Group Jackie: 0126 845 1937 or email: Bedfordshire Betty: 0138 881 4535 [email protected] Saturday Social Club Darlington Support Group Karen Richards: 0123 479 2278 Sister Jacqui Atkinson: 01325 743005 Berkshire Cornwall G E.B.O.C (East Berkshire Ostomy Club) Cornwall & Plymouth Bowel Cancer Jackie Dudley: 0134 442 6652 Support Group Gloucestershire Reading Bowel Cancer Support Group “Keith Anderson: 0182 225 8618, Ladies Big Op Group Ted Wingrove 0118 961 8297 or 07974 [email protected] or website Gill Hopkins: 0300 422 4363. Please 790 558 www.cornwall-bowel-cancer-support- Note: For ladies with one or two W.B.O.C (West Berkshire Ostomy Club) group.co” permanent stomas Jackie Dudley: 0134 442 6652 Cornwall Ostomy Support Vale Stoma Support Group Ken Jones: 01872 863 106 or Bristol [email protected] or text 0794 www.cornwallostomysupport.org.uk Bristol Ostomy Self Support (BOSS ) 182 7393 Janet on 01934 248 114 or Rob on Ostomist and Carers Support Group 0117 966 8021 Christine Davey: T: 016370 850 895 E: [email protected] or Mandy Buckinghamshire Rowe: 01726 832 642 H Milton Keynes Stoma Association Dee Stobie 0190 867 2918 or Cumbria Hampshire [email protected] Grange Cancer Support Drop in Solent Ostomates Support Group Marie: 0153 953 3279 (New Forest Branch) Ron Lever 0238 089 3949 / [email protected] C D Solent Ostomates Support Group (S.O.S.) Cambridgeshire Carole Summer: 0752 770 7069 Connections Cancer & Colostomy Derbyshire Southern Ostomy Group Group Diverted Local Stoma Support Group Caroline or Karen on: 07756 819 291 Bev or Sue Scott 0135 386 0356/ Diane Manning: 0128 354 1311 [email protected] 0776 695 8811 or Barbara Hunt 0135 Devon 386 2133 Wessex Urology Support Group Mid Devon Ostomy Support Group Adrian Kuczynzki: 07910 786 978 Peterborough Stoma Support Group - Janice: 07923975051 or Ostomistics [email protected] Herefordshire Alan Wright 0135 465 3290 / 0783 Herefordshire Stoma Support Group Dorset 666 1102 Carol Steele 0143 288 0656 or email: Colostomy Urostomy Pouch Ileostomy [email protected] Cheshire of Dorset - CUPID (Bournemouth) Countess of Chester Hospital Stoma Beryl Andrews 0120 248 3303 Hertfordshire Support Group Colostomy Urostomy Pouch Ileostomy Colonise Stoma Nurses 0124 436 6170 of Dorset - CUPID (Poole) Anastasia 0172 776 0981 Stockport Support Group Jenny Pipe: 0120 274 0440 Hertford Stoma Support Group Angela Simpson: 0161 320 9400 / “Colostomy, Urostomy, Pouch & Ralda: 0199 253 5311 0800 652 6667 Ileostomy of Dorset - CUPID (West Stevenage Ostomistics Stoma Support Group Dorset)” Judy Colston: 0143 835 4018 / Catherine McIntosh: 0147 753 5071 Colin Clare - 0130 585 3238 [email protected] or Alfred: Warrington Ostomy Support Group 0176 731 6958 Jane Shaw: 0192 566 2103

64 | TIDINGS | SPRING 2016 | 24 HOUR HELPLINE: 0800 328 4257 SUPPORT GROUPS IN YOUR COUNTY Leicestershire Northumberland I Kirby Ostomy Support Group. Berwick Ostomy Support Group Colostomy, Ileostomy and Urostomy in Bobbie Minshull: 0771 447 9320 Isle of Man Leicestershire Hexham Ostomy Group IOM Bowel Cancer Patient and Carer Janet Cooper: 0116 239 2844 / Judith on 0796 792 7286 [email protected] Group Northumberland Cancer Support Heather Norman: 07624 480 973 Lincolnshire members@northumberlandcancersup Stoma Support Group Friends East Coast Support Group portgroup.co.uk Carole Cringle stoma nurse: 0162 465 Betty: 0120 572 4120, Sheila: 0120 Nottinghamshire 0212 536 4493 North Notts Stoma Support Group Isle of Wight Grantham Support Group Tore and Nicky Norman: 0177 371 Optimistics Bobbie/Rachel: 0147 646 4822 5460 CNS’s Andie Coates & Amanda March Group “Nottingham Colostomy, Ileostomy & Broadbridge 0198 353 4009 Sharon Palmer: 0741 482 8867 or Urostomy support group” Semi-Colon Club [email protected] Rosemary Brierley: 0115 982 6691 Tony Crowson on 01983 559 326 or Sutton Bridge and Long Sutton Nottingham Stoma Support Cancer Clinical Nurse 01983 534 180 Ostomy Group Jenny or Kate: 0115 962 7736/ Mrs B 0140 635 1617 Heath: 0115 966 3073 K London Bowel Cancer Newham Kent Scyana: 0208 553 5366 Ashford Stoma Support Group [email protected] Carole Hobbs: 0130 381 4014 or ESSence (Ealing Stoma Support O Margaret Webb 0123 362 8807 Group) Oxfordshire Wendy Hetherington: 0771 733 5884 Atoms Support Group Oxfordshire Ostomy Fellowship “Maria Culleton, SCN: 0122 776 9679 Homerton Hospital Bowel & Stoma Pat Longworth: 0123 552 4163 or 0782 799 7424” Support Group Dartford Ostomy Group Support Angela Davy: 0208 510 5318 or 0208 Shropshire (DOGS) 510 7599 B.O.T.S. (Bums on Tums) “Tracey, John or Sue: 0794 897 4350 Rectangle - Colorectal Cancer Support Irene Constable on 0169 123 8357 or [email protected]” Group Somerset Dover Stoma Friends Group Support Regina Raymond 020 7472 6299 Devon IA Julie Bell: 0777 134 5703 or Ros South Woodford Support Group Martin Hornby: 01458 251 095 or Marshall: 0130 482 2696 or June Nurse Christina and Lisa: 020 8535 email: [email protected] Golding (Organiser): 0130 482 2696 6563 Staffordshire M.O.G.S (Medway Ostomy Group St. Thomas’ Hospital Outlook Support) CNS: 020 7188 5918 Moira Hammond 0778 840 2195 Helen Or Tracey: 0777 360 5534 Surrey & South London Bowel Cancer Maidstone Stoma Support Group Support Group Suffolk Judy/Kirsty: 0162 222 4305 Sue Berry: 0173 755 3134 or John East Suffolk Ostomy Group Royal Tunbridge Bowel Cancer Amos: 020 8668 0796 Marion Fisher: 0147 331 1204 Support Group James Pagett Ostomy Support Group Bronwen Tetley CNS: 0189 252 6111 x (Afternoon Meeting) 2287 Vicki Blackwell on 01493 663363 Sheppey Ostomy Group Support M James Pagett Ostomy Support Group (SOGS) (Evening Meeting) Shelley 07714 734 194 / sogs- Merseyside Sandra Hutchings: 0150 258 5955 [email protected] I.C.U.P.S SCN: 0151 604 7399 West Suffolk & District Stoma Group SWAN Stoma Support Group Jessica Pitt stoma nurse: 0163 851 Heather: 0771 144 5312 St Helens Cancer Support Group 5525 “Office: 01744 21831, Denys Floyd: Thanet Stoma Buddies Support Group 01744 884097 or email: Surrey Phil (Secretary) 0184 358 7769 contact@sthelenscancersupportgroup. Epsom and District Stoma Support org” Group “Lindsay, Trevor or Sheena: 0137 273 Middlesex 5925” L Inside Out Sarah Varma: 020 8235 4110 Bob Sussex Lancashire (chairman): 020 8428 4242 Brighton & District Support after North Manchester and Bury Stoma Stomas (SAS) Support Group Sylvia Bottomley: 0127 355 4407 Julie Meadows (SCN) 0161 720 2815 Chichester Stoma support Group or 0784 120 6910 N The Stoma Care Team 0124 383 1527 Oldham Stoma Support The Ostomy Friends Group Norfolk June Wilde: 0161 312 5538 Jane Quigley: 0132 341 7400 ext 4552 Kings Lynn Ostomy Friendship Support Tameside Ostomisticles Group West Sussex Princess Royal Stoma Paul Seavers on 0777 135 9046 For more info please call 0155 369 Support Trafford Bowel Care 1370 / 768271 / 775698 Tina Walker: 0144 444 1881 ext 8318 Jackie Carey Secretary: 0161 748 9659, Stars Doreen: 0161 962 7818, John: 0161 Anne Browne: 0160 366 1751 748 4655

| WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 65 SUPPORT GROUPS IN YOUR COUNTY T Scotland Channel Islands

Tyne & Wear Gateshead Stoma Patient and Carer A G Support Group Stoma Care Nurses: 0191 445 3152 or Ayrshire Guernsey email [email protected] Ayrshire & Arran Stoma Support Group Guernsey Ostomates NHS Molineaux Centre Jim Krasewitz: 0129 222 0945 Luci Deane 0148 123 6077 / Gordon Weatherburn: 0191 234 1109 Stoma Care And Recovery (SCAR) [email protected] Royal Victoria Infirmary Support Group Maggie: 0129 427 1060/ 0781 773 Gordon Weatherburn: 0191 234 1109 6147 [email protected] or Rhona: 0129 455 7478 W F Republic of Ireland West Midlands Coventry Stoma Support Fife Martin: 0794 738 5643 Fife Ostomy Support Group C Ishbel Barr: 0159 277 2200 Wiltshire Co. Mayo Swindon IA Mayo Stoma Support www.swindon-ia.org.uk L Marion Martyn: 094 902 1733 Wessex Stoma Support Group Michael Slater: Lanarkshire [email protected] or on G66 Support Group D 0172 274 1233 Les Ireland 0141 776 3866 Dublin Worcestershire Bowel Cancer Support Group (ICS) Kidderminster & District Collossus National Cancer Helpline: (00 353) 1 Support Group 800 200 700 or Olwyn Ryan: (00 353) Brendon Drew: 0129 940 0843 1 231 0500

Y Northern Ireland Yorkshire Acorn Ostomy Support Group Rest Of The World Michelle: 0758 069 3155 (After C 6:00pm) Airedale Stoma Support Co. Antrim F Sue Hall: 0153 521 0483 Colostomy Association Volunteers Northern Ireland France Barnsley Bottoms Up Stoma Support Chris Wright: 0772 071 7771 Group Stoma France Stoma Nurses 0122 643 2528 or Celia Mater Hospital Adrian March:+33(0)49 450 1136 or Utley (Chairman) 0122 628 4262 Karen Boyd - Stoma Nurse: 0289 074 email [email protected] 1211 Ext 2329 Behind You (Calderdale & Huddersfield Bowel Cancer Support Royal Victoria Hospital - Belfast Sarah Haughey/Audrey Steele: 0289 Group) 024 0503 Ext 3483 Stoma Care Nurses: 0148 435 5062 Dewsbury & District Ostomy Co. Armagh K Janet Edmond: 01924 512 041 or Craigavon Area Hospital 01924 512 072 Mary Jo/Bernie: 0283 861 2721 Kosovo Kosovo Ostomy Leeds Bowel Cancer Support Group Daisy Hill Hospital Support Group Arta Uka: [email protected] Lynda Castle (Colorectal Nurse Bernie Trainor: 0283 083 5000 Ext Specialist) 0113 206 5535 2222 Scarborough Stoma Support Group Co. Down “Sister Jean Campbell: 0172 334 2388, North Down Stoma Support Group Amanda Rowe: 0172 334 2446” Adrian Ewing on 0785 074 1511 S The Hull and East Riding Colostomy Ulster Hospital Support Group Hazel/Martina: 0289 055 0498 Spain Pete Smith: 0798 956 5335 or Pete Costa Brava Rennard: 0793 951 8642 / 0148 279 Co. Fermanagh http://www.ostomyinspain.org/ 3966 or Rosanna Grimsby: 0148 280 Erne Hospital 1575. www.hercosg.org.uk To be confirmed L

Londonderry Causeway Support Group Mary Kane: 0287 034 6264

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| WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK TIDINGS | SPRING 2016 | 67 a dedicated delivery and support service. Peter’s story After 8 months, Peter and Val are beginning to live their old life again, Talking to the respond Customer Support Team after Peter’s stoma operation. helpedq:HKD GPeterQRLGH getDWKHU backHZHU on theHVR course.PDQ\GLƪHUHQW

products. Tracey has been great with ideas of things Peter Hart used to enjoy playing to help Peter get his old life back” said Val. “She’d golf with his friends and holidays suggest things he needed, and with the help of the with his wife, Val, which they support belt he is playing golf again.” thought would all have to be given “ The support we get has up when he had a colostomy operation in June 2015. made a big difference.” When he was released from Kings Mill Hospital in Nottinghamshire, “The Ostomart adhesive remover is amazing and Peter was placed onto a home delivery service with WRGURSVRPHRƪEHIRUHRXUQH[WGHOLYHU\ZDVGXH when we were running a bit low, respond arranged respond. The service has supported Peter and his wife, Val, to get back to doing the things they did That was in the early days when we hadn’t quite got before the operation, that they most enjoyed. adjusted.” “Right from the very start, the support from DFKDQJHWR\RXUOLIHDQGUHVSRQGKDVRƪHUHGDOOWKH Now Peter or Val speak to respond just ahead of their customer service has been second to none. It is quite delivery date to check their repeat order and talk about any other requirements. support that we needed. The service has been very, “It just seems to work “veryRespond good”, said Val. has offered all like clockwork” the support that we needed” Peter says “It just seems to work like clockwork. They just do respond to us very well. It’s not just “Tracey is our main point of contact, she’s been KRVSLWDODQGKDGORVWDVLJQLƬFDQWDPRXQWRIZHLJKWKH an ordering service. They listen and respond.” amazing”,KDGDIHZFKDOOHQJH said Val. SinceVWKD WPeterQHHGH feltGORRNLQ weak JafterDW)LUV leavingWRƪ Now, with reassurance from respond, Peter and Val can look forward to their next holiday in a log cabin he was unsure whether he could play golf again. with hot tub and swimming pool.

0800 220 300 respond might be a new name, but we have been Respond Healthcare Ltd helping make life better for thousands of stoma patients [email protected] for a long time. respond.co.uk Part of the family-owned Eakin Group – we have been specialists in ostomy care since 1974. We champion quality of life for people living with a stoma, putting your care at the heart of Come and say hello what we do. We listen to you and respond to your needs. FXVWRPHUVHUYLFHRIƬFHDFDOODQGWKH\FDQKHOSUHDVVXUH\RX If you wish to chat about the change, simply give your usual respondltd that whilst we’ve made some changes, we are still the home @respondltd delivery service that you have always relied on.

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