Tidings Issue 55 Autumn 2019

Autumn 2019 | Issue 55

Supporting and empowering you

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My two stomas Ping & Pong… page 24 COLOSTOMY UK NEWS

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2 | TIDINGS 55 | AUTUMN 2019 WEBSITE: WWW.COLOSTOMYUK.ORG

3706_Pelican_JournalAd_A4_AW_V2.indd 2 30/08/2019 15:51 WELLBEING Dear readers

“ It’s given Editorial Team Editor, Writer & Researcher Richard Biddle me my life General Manager Libby Herbert Sitting down to write this I can’t believe it’s the autumn already. I hope plenty of you Colostomate & Volunteer back” Jackie Dudley were able to get away this summer. I managed a couple of weeks in Sicily. Being a history buff, this was a dream destination. The sunny weather and good food was Colostomate & Volunteer just the icing on the cake…honest! Rosemary Brierley Stoma Care Nurse Advisor With the exception of ‘Dear nurse’ this edition of Tidings has all the regular features. Our Julie Rust RGN, Dip, N MSc real lives’ stories cover returning to work after stoma surgery, the impact of stoma surgery Data Analyst & Publishing on mental health, and one man’s determination to carry on enjoying an active lifestyle Arvind Anand despite bowel cancer necessitating a colostomy. We also have a trip down memory lane for our more seasoned ostomates, with a story about having a stoma in 1968. This one Get totally nourished has wider relevance too, as the author talks about having a baby after her stoma was formed. The Bowel Disease Research Foundation (BDRF) have contributed an interesting article outlining the research they do. As you will see, there is the potential here for you to shape the content of their future submissions. If you have any suggestions in this regard, skin with Vitamin E then please drop me a letter or e–mail. I know from chatting to people at our Big Open Day in June, that ‘Dear nurse’ is missed by many readers, so I thought it would be helpful if I explained why it is absent again. The reason is very simple: we haven’t received a single question for our nurse since the The skin around your stoma goes through a lot. middle of last year. I’m convinced that this is partly down to the growing popularity of online groups and forums. My feelings about seeking advice in this way are mixed. On the Trying to keep it healthy can be a challenge, Moisturising one hand, people can pose questions and get very quick responses (much quicker than and many experience irritation and sore skin. waiting for an answer in Tidings). But on the other hand, I have concerns about some of the advice given, particularly when those giving it are lay people encroaching on medical ground. My view (and that of Colostomy UK) is that medical queries should always be directed to a healthcare professional and, if the matter is urgent, then people should call That’s why we developed the Platinum with Vitamin E Kinder to Skin their stoma care nurse and/or GP, rather than turning to their computer for an answer. range. Our pouches and skin care products are infused You’ll hopefully be pleased to know that we haven’t given up on the Dear nurse feature, protect repair nourish but we do need your assistance to run it. So please: write, e–mail, or even telephone us, with 1% Vitamin E to , and the with your questions. We have also decided to broaden things out, in the hope that this will sensitive skin around your stoma. help. Hence, we are now looking for stoma–related questions to direct not just to stoma Faster Healing care nurses but surgeons and dietitians as well. I’m going to sign off by saying something about the new NHS formularies and stoma Now available: Firm Convex* providing additional prescribing services, which I know are causing concern (see letters page 31). In brief: Clinical Commissioning Groups (CCGs) across the country have started to change the support and security for challenging stomas is here. way in which repeat prescriptions for stoma products are issued and delivered. The stated * Tidings Magazine: Consult with your Stoma Care Nurse before use. Anti-Inflammatory The views expressed by the contributors are not aims are to make sure that the needs of patients are reviewed regularly so that they necessarily those of Colostomy UK. Great care has receive the right products while, at the same time, reducing waste and costs (arising been taken to ensure accuracy, but Colostomy UK cannot accept responsibility for errors or omissions. from patients ordering/being ordered either the wrong products or the wrong amounts Available in: Flat and Convex; Closed, Drainable, Urostomy, of products). Colostomy UK is currently gathering information as a precursor to deciding Disclaimer: what our role should be as a charity that supports and advocates on behalf of ostomates. High Output, Barrier Film, Barrier Cream and Adhesive Remover. The display, description or demonstration of products and services or the inclusion of Unsurprisingly, the emerging picture is complex, with seemingly little consistency in terms advertisements, inserts and samples within Tidings of how CCGs across the country are implementing changes. In summary, we are on the Magazine does not constitute an endorsement or recommendation of these products and services by case and will keep you updated.* Colostomy UK. ©Copyright 2019 Colostomy UK. All rights reserved. Order your samples today to discover totally nourished skin No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, *Shortly before going to print we were 0800 318 282 pelicanhealthcare.co.uk photocopying, recording or otherwise, except as permitted by the UK Copyright, Designs and Patents consulted by Liverpool CCG about the Richard Biddle Act 1988, without the prior written permission of changes they plan to make. We see this as Editor, the publisher. All marks acknowledged. a positive development. Writer & Researcher FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 55 | AUTUMN 2019 | 3

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0800 917 9584 www.suportx.co.uk 4 | TIDINGS 55 | AUTUMN 2019 WEBSITE: WWW.COLOSTOMYUK.ORG CONTENTS Easy Peel & Tube Belts Contents

EASY PEEL BELTS TUBE BELTS Breathable Breathable Cover story 24 My two stomas ‘Ping’ and ‘Pong’ Vicky Sykes We are Colostomy UK. Here if you have questions, need support or just Colostomy UK news want to talk to someone who lives with a stoma. 7 Colostomy UK: news Your voice on the bigger issues: 26 Our BIG Open Day: report advocates for your rights and campaigning to raise awareness of what matters to you; running projects Real lives to empower you; building communities to support you. 8 Back to work and life after colostomy Lesley Denton How to contact us 15 Life is for Living Richard Jordan Stoma helpline for: Emotional support, 28 NEVER GIVE UP: From Bobby Charlton to experience based advice and guidance from a volunteer. family of three! Lynda Smith 0800 328 4257 Available in 15, 20 and 26cm Depth. Available in 15, 20 and 26cm Depth. 24 hours a day and completely free. Also White, Black and Neutral. Also White, Black and Neutral. Wellbeing Adminline for: A wide choice of sizes from XS to 3XL. A wide choice of sizes from XS to 3XL. Information packs, ID cards, 12 Colostomy UK: active ostomates RADAR keys, travel certificates and literature. 19 Bowel Disease Research Foundation 0118 939 1537 Glen Saffery, Research Coordinator LACE TUBE BELTS EASY PEEL BELTS TUBE BELTS If we’re not in, just leave a message. [email protected] 22 Irrigation and you: Fear, fun and finding your feet… To request (or cancel) your quarterly all part of the experience (part two) Trevor Alexander copy of Tidings 0118 939 1537 [email protected] Fundraising Editorial Enquiries 40 Colostomy UK: focus on fundraising Letters, articles or other submissions Colostomy UK Enterprise House, 95 London Street Support Reading, Berkshire, RG1 4QA 31 Your letters and e–mails [email protected] 34 My role as a hospital visitor Moira Hammond Advertising enquiries For a media pack 38 News from support groups across the UK and advertising rates 0118 918 0500 43 Stoma care open days Find [email protected] on Facebook Badge CMYK / .eps Available in 15, 20 and 26cm 43 National support organisations Social media: Available in White, Black Depth. Also White, Black and Available in White, Black 44 Stoma support groups in your county and Neutral. Bespoke Neutral. A wide choice of sizes. and Neutral. Bespoke sizes and depths. Also available in Bespoke sizes. sizes and depths. New products Join our ‘closed’ support group today simply put ‘Colostomy UK 37 New products and services support group’ into your FACEBOOK AVAILABLE ON NHS PRESCRIPTION FROM YOUR GP search bar, click on Group and click on ‘Ask to join’ you will be assured Donating to Colostomy UK of a warm welcome! An annual donation of £20 (or whatever you can afford) allows us to produce Tidings Suportx offer aFREE nationwide fitting service for all hernia and to continue our vital work, supporting, and empowering ostomates – see page 42 for donation form. support garments call or visit our website on: You can also donate via our website www.ColostomyUK.org/donate or by calling us on 0118 939 1537 0800 917 9584 www.suportx.co.uk FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 55 | AUTUMN 2019 | 5 COLOSTOMY UK NEWS

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14691 Appeel Advance Patient A4 Ad AW.indd 1 20/02/2019 09:10 COLOSTOMY UK NEWS Colostomy UK: news

For more information about the charity Out and about… please view the website: www.ropsf.co.uk or speak with the Project Director, Bob Bailey on: 01892 663 112

At the end of June, Richard and Giovanni attended the East of England NHS Collaborative Procurement Hub StoMap For those of you that don’t know, conference in Newmarket. The aim of Purple Wings is a charity who, like us, the StoMap project is to understand how are dedicated to supporting ostomates. stoma products are selected, prescribed They held their annual conference and and dispensed, and how services are ball in August and Libby was invited commissioned in the East of England. The to go along. Nicola Ridler (soon to be hope is that this will ultimately reduce Colostomy UK volunteer) joined her too. It was a friendly event with lots of variation in product availability, introduce inspirational speakers and an excellent best practices, ensure that patients are opportunity for our two charities to central to decision making and lead to come together. Thanks to everyone at sustainable services with transparency Purple Wings for the invite! in spend. We were pleased to be able to As we reported in the last edition, attend. See Dear readers (page 3) for more Colostomy UK have recently teamed up about NHS formularies. Romanian Ostomy with Target Ovarian Cancer. We are pleased Patients Support to announce that the booklet we have co–authored is now in print. Based on the Foundation latest evidence and full of insights from women with ovarian cancer who also have Become a stomas, it addresses the common concerns trustee of the people have pre and post–surgery. Copies Romanian can be downloaded from our website Ostomy Patients Support (www.ColostomyUK.org) or call our admin Foundation and line: 0118 939 1537 and we will send you share your experience. one in the post. With a superior formulation and 360º application In 1996, the Ileostomy & Internal Pouch Support Group together with the British Stoma–friendly Colostomy Association and the Urostomy who cares which way is up?! Association worked on a collaborative society update project to help ostomy patients in We have had some more great news: Appeel® Advance is the same great medical adhesive remover as our market leading Romania. In 2000, this ostomy group formed the Romanian Ostomy Patients u Theatre Royal Nottingham and Appeel Spray made with a specially formulated blend of healthcare grade silicones, Support Foundation (ROPSF) and its Nottingham Concert Hall now with 360˚ application. The integrated bag-on-valve technology means you can experience work continues, in order to improve the have stoma friendly accessible life of those patients who undergo major toilets. If you look at the letters a spray that works in any direction and also ensures you get 100% usage of the product abdominal surgery leading to the formation page (page 31), you’ll see that with no cold feeling on your skin. of a stoma. Through ROPSF help is also this has already been noticed by Libby and Giovanni attended the given in training carers, as well as nurses one of our readers! and those from the medical profession. For more information or to request a free sample, call our free conﬁ dential Association of Coloproctology of Great u Meadowhall Shopping Centre, CliniMed Careline 0808 115 1375 or visit www.clinimed.co.uk. Britain & Ireland’s (ACGBI) annual Very many of the patients have a colostomy Sheffield (the largest shopping conference in Dublin in July. Each year this and currently ROPSF is looking for one centre in Yorkshire), are completing three–day event brings together colorectal or two new trustees with a colostomy to upgrades to their accessible toilets surgeons, nurses, charities and patient augment the valued work that is being (18 in total) and so should soon be liaison groups. It was great being able to undertaken by the present trustees. Be stoma friendly too. raise awareness about Colostomy UK’s assured that this is a most interesting u We are continuing to work with work with those who attended. We were and rewarding part–time role joining a airports across the UK and were also able to catch up with our friends at dedicated group of people focussed on CliniMed®, Appeel® and Hydrosolve® are registered trademarks of CliniMed (Holdings) Ltd. CliniMed Ltd, recently invited by Gatwick to sit Crohn’s & Colitis, The IA and the newly improving the wellbeing of Romanian a company registered in England number 0164627. Registered ofﬁce: Cavell House, Knaves Beech Way, on their accessibility forum. formed Ostomy Association of Ireland. ostomy patients young and old. Loudwater, High Wycombe, Bucks HP10 9QY. © CliniMed Ltd. 2019. PID 6847. FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 55 | AUTUMN 2019 | 7

14691 Appeel Advance Patient A4 Ad AW.indd 1 20/02/2019 09:10 REAL LIVES Back to work and life after colostomy Lesley Denton

The countdown to my retirement has need to make to my lifestyle. Luckily, a session didn’t go well and was aborted. Due started and I can’t wait. Having worked number of people I knew had friends and to various problems I was at the hospital all my life I reckon I’m due a rest, relatives with stomas. I was able to talk to for nine hours, having two lots of Piriton particularly after the last few years. them and managed to get lots of advice and saline by drip. After this experience I These included a diagnosis of bowel and guidance. I really appreciated this as decided I could take no more. So, instead cancer, stoma surgery, chemotherapy and it helped me to prepare for the surgery. of continuing with the chemo, I went for then the ordeal of returning to work. I’m From the start I decided to be up front with regular scans and blood tests and seeing sure that the latter is something that many friends and also my colleagues at work. the consultant on a six–monthly basis. This readers will have faced, or are about to face, When I started telling people about the will continue until 2023. regardless of why they had stoma surgery surgery I was going to have, I discovered Towards the end of 2017 I had sufficiently in the first place. It was this that prompted that one of my co–workers didn’t even recovered to know that it was time to me to submit my story to Tidings, as I know what a stoma was. Being able to be brave and start the process of getting thought people might be able to learn from explain to them was of course a good my life back on track. First steps included my experience. thing, because it helped them to be more attending the quizzes my husband and I understanding of my needs later down the Bowel problems have plagued me most of support, a trip to the theatre in town (as line when I returned to work afterwards. my adult life. I was assured on a number of we had bought tickets before I had the occasions that it was because I had Irritable I had my surgery at the end of September operation) and out for the occasional Bowel Syndrome. Like many people with 2017. It was a seven–hour operation. The meal. I know that many people struggle the condition, I made adjustments to my following day as I was recovering, one of in the early days and have concerns about diet in the hope that this would alleviate the stoma nurses visited me and asked if I managing their stoma when they are out my symptoms. During 2017 things however wanted to see my stoma. When I said “yes” and about. Thankfully, this wasn’t me changed. I started to see blood when I this surprised her. She said that some of and there were no hiccups as I made my passed motions and the frequency with her patients found it so difficult to accept comeback. All I will say, is that locating the which I needed to visit the toilet increased. their stoma and what had happened to nearest accessible toilet in case I needed I also noticed that I had a lump in my back them, they wouldn’t even look at it for the to change a pouch was my first task on passage, which I thought was probably a first few days. But I took the view that it any trip! I have subsequently discovered haemorrhoid. When I visited the GP she was part of me so I had to look and learn the RADAR key and certainly recommend thought it was a polyp and arranged for a the start of a new routine. I named my getting one. It was really useful on the colonoscopy. Subsequently the polyp was stoma Cherry due to its colour and shape. first lengthy car trip I made in June 2018, removed and found to be cancerous. Mr The day prior to my leaving hospital one which included the M25 on Ladies’ Day at Benziger, the consultant I saw, was very of the stoma nurses came to see me and Ascot and needing to use the motorway ‘to the point’ and advised me that the best said I was “an inspiration” as I was coping services to change a pouch. It allowed option to prevent the cancer spreading was so well and had accepted my stoma with me immediate use of an accessible toilet to have my anus, rectum and part of my no problem. equipped with a clinical waste bin. colon removed and a stoma formed. It was found that one of the 23 lymph When I was around four months post–op I Once I had recovered from the initial shock, nodes removed was also cancerous and started to think about returning to work. I I realised that I had to give thought to the preventative chemo was suggested. This am a legal secretary and the office is some future after surgery and changes I might started in January 2018, but the second 15 miles from home. The prospect was

8 | TIDINGS 55 | AUTUMN 2019 WEBSITE: WWW.COLOSTOMYUK.ORG REAL LIVES daunting. As well as my stoma to consider, Right from the start everybody was fine, to the computer!). If you are at the point by this time I had the start of a parastomal caring and helpful, but this didn’t stop of thinking about a return to work yourself hernia to contend with, as well as phases me having a few wobbles in the early then I encourage you to talk to your of depression and occasional panic attacks. days. Looking back I can see that this was employer and also to your work colleagues. I was also concerned about how I would perfectly understandable given what I’d It certainly helped me and has continued manage to fit routine hospital visits around been through, but at the time I wasn’t to do so. I learned from talking to one of work. Rather than keep all this to myself able to step back in this way and think the accounts staff, that by law an employer I decided to be as open as I could with so rationally. If you are about to return to is required to provide a clinical waste bin my boss. I believe that this was the right work, then try to remember this and don’t should any full–time member of staff approach. He was very understanding and let something small that happens get out have a stoma. Whether this is correct I’m it was agreed I would initially return for of proportion! For example, the first time not sure, but days after I raised the matter three or four mornings a week and build I had to change a pouch at work I initially my own clinical waste bin was delivered. panicked but then thought I have to deal This was much better than going outside from there. with this. After all, Cherry was part of my to put the black bag in the public bin! Although it was reassuring to know that I way of life now. After I had changed the Additionally, because people know about could dictate the pace of my return, I was pouch I realised that the usual bins in the my situation, it has been easier to make still very apprehensive about going back. My Ladies were not for this sort of clinical adjustments to my role. For example, one mind was constantly filled with questions waste. So I went outside and placed of the other secretaries has happily taken and thoughts, mainly around managing the black bag in the council refuse bin. I on most of the filing. This is great because my stoma and the reaction of colleagues couldn’t think what else to do. My next it means I don’t have to worry about over should I have a mishap: What if Cherry worry was about changing my pouch when exerting myself lifting heavy files. As you works overtime and I need to change a another member of staff was in the next can probably imagine, they can be quite pouch? How will I dispose of it? What if I cubicle. Even though I routinely sprayed hefty in a solicitors’ practice. the bag and cubicle I thought “What if have bouts of wind? Will others stare at me If you are about to return to work then I there is a smell?” Again, I soon realised I or ask questions? How much information hope reading about my experience will was panicking unnecessarily. Having told do I give? What if I feel depressed and help make your return just a little easier. people what I’d been through, they knew cannot cope? Must remember to take As I said at the start, I’m now counting the situation and, what’s more, there are my kit etc. I’m sure that such worries are down to my retirement and as I write this, sometimes smells in toilets! common to all ostomates. My advice is have just reduced my hours and am now to talk to your employer and also talk to Overall, I soon got back into the swing of working just four days a week. This means your colleagues. This can be difficult, but I things (although on my first day back I I no longer have to worry about fitting in believeHalfx3 13v01r00 that doing Photo so IDaided Application.qxp_Halfx3 my return. 13v00r00couldn’t Photo remember ID Application my password 12/03/2019 to log 10:40 on Pagethose 1 hospital visits! ■

National Key Scheme (NKS) Radar Key Photo ID Card and Photo Identity Card The Colostomy UK photo ID card can be useful if challenged To obtain a key or a photo identity card please complete the when using accessible toilet form and declaration. Make your cheque payable to facilities. Colostomy UK. Return all required items to: Colostomy UK, Enterprise House, 95 London Street, To apply for a Photo ID card, Reading, Berkshire, RG1 4QA complete the form opposite and return it to the Colostomy UK for (If you have any queries or would like to pay by credit card, please contact Colostomy UK office: Telephone: 0118 939

no. 1113471 processing with the enclosures 1537 or Email: [email protected]) listed below: National Key Scheme - Key and photo ID card purchase • A copy of your prescription or delivery note as proof of Title: Please tick as appropriate: eligibility • Passport photo x 1 Name: I would like to receive a key £3.50 (including postage and packing). • Payment – cheque or Address: credit card* I would like to receive a photo ID card for £6.50 (including postage and packing) and enclose a passport photograph. *Note: Credit card payments Postcode: can be taken over the NOTE: Please send a copy of your prescription/ recent delivery note as proof of eligibility telephone if preferred, ensure Tel: the above are sent in the post and make the cheque payable to: Colostomy UK. in advance. Email: For payment by credit card, send your documents in the post with a contact Alternatively, the form can be DECLARATION: I declare that the individual named above is telephone number, we will then call you downloaded from our website: chronically sick, has a disabling condition or has had a bowel or to take a card payment when received. www.ColostomyUK.org bladder diversion that necessitates the use of accessible toilet facilities. The key is for the personal use of the above named and Allow maximum of 10–14 their designated carer only. days for delivery. Please cut along the dotted line and return to address on this form - thank you Signature of self or carer: Date: / /2019 Halfx3 13v01r00 Photo ID Application | Date of Publication: July 2019 Copyright ©2018–2019 Colostomy UK Registered charity T55

FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 55 | AUTUMN 2019 | 9 The better the fit, the lower the risk of leakage

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*By filling in the coupon, one of our product specialists will contact you to discuss which is the right your FREE solution for your needs before sending any free samples. Simply post back to FREEPOST COLOPLAST sample The only convex (no further postal address details or stamp required). Alternatively, visit www.coloplast.co.uk/ColostomyUK First name Surname

proven to reduce Date of birth Email

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How your information will be used - By providing your personal and sensitive personal data on this form, Signature you are consenting to Coloplast Charter using it for administration and analysis purposes and to process your order. We may share this information with healthcare professionals and other companies required for the delivery of your products or as required by law. We may also contact you to ask you to clarify your requirements and to ask you to complete customer satisfaction or other surveys, and may use 3rd parties to handle this as outlined in our Privacy Policy which can be found at Coloplast.co.uk/privacy. We often keep customers up to date with the latest information on the products and services we offer. Please indicate if you would not like to be kept informed by:

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*Our team are registered with the CQC (Care Quality Commission) who independently monitor the care we provide. 1. Walker et. al. Raising the bar: new flexible convex ostomy appliance – a randomised controlled trial. WCET supplement 2016 OC_ColostomyUK_Convex_18/19 10 | TIDINGS 55 | AUTUMN 2019 WEBSITE: WWW.COLOSTOMYUK.ORG

CPOC_SMio_Convex_UK_Ad_A4_KO_V3.indd All Pages 23/08/2019 16:53:23 The better the fit, the lower the risk of leakage

We recognise leakage is one of the main concerns for people with a stoma. The SenSura Mio Convex is the only convex product proven to reduce leakage.1

Available in three unique levels of convexity, it is designed to meet your individual needs.

Yes please, I’d like to try SenSura® Mio Convex Request

Date of Stoma Surgery Telephone No. leakage

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*Our team are registered with the CQC (Care Quality Commission) who independently monitor the care we provide. 1. Walker et. al. Raising the bar: new flexible convex ostomy appliance – a randomised controlled trial. WCET supplement 2016 OC_ColostomyUK_Convex_18/19 FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 55 | AUTUMN 2019 | 11

CPOC_SMio_Convex_UK_Ad_A4_KO_V3.indd All Pages 23/08/2019 16:53:23 WELLBEING Colostomy UK: active ostomates

Welcome to the regular update page dedicated Giovanni Cinque to our ‘Active Ostomates’ project. Fundraising and Development Manager E: [email protected] ‘Active Ostomates’ supports your wellbeing with a range of programmes. Some are delivered through support groups; some can be done in your own home; others you need to sign up for. We will also be promoting activities and events #Stoma66 that can help everyone work towards having a more active body and mind.

Introducing Stoma 66! Last year our 50K Challenge encouraged people with a stoma, their friends, family members and healthcare professionals to get fit, along the way smashing our target of 50,000 kilometres and demonstrating that having a stoma need not be a barrier to achieving anything. It ran from April to October and to say we were blown away by the results is an understatement. 356 of you helped us rocket through the 50K barrier. Together we reached a staggering 69,739 kilometres. One of the great benefits of the challenge was the number of participants who stayed active after it finished. Research shows that on average it takes 66 days to form a lasting habit. This means if we can get you active for 66 days then there’s a good chance you’ll carry on being active afterwards. So this year our challenge Rugby league update is focused on getting you active and keeping you active. That’s At the time of writing our Rugby League team have played three why we’ve called it: Stoma 66! And, as a little incentive, we’d like games so far this year and we’re really proud of the impact each you to help us reach an even bigger target this year of 66,000 one has had both on and off the pitch. kilometres. Back in June we visited the Chorley Panthers and had a fabulous Being active on a regular basis is important because it can help day on what is now planned to be an annual event. A crowd of over reduce the risk of developing cardiovascular diseases. If you’re 400 were joined by several high profile sportsmen who came along overweight, exercise can help you reach and maintain a healthy to show their support for us. This included Rugby League players weight, thus reducing the risk of diabetes and heart disease too. Josh Charnley of Warrington Wolves and England, Jamie Ellis from Maintaining a healthy weight is also important for the health of Castleford Tigers, plus Owen Farnworth and Anthony Gelling from your stoma. Widnes Vikings, and undefeated pro boxer Jack Catterall. Both the Exercise is also good for your mental health and well–being. This size of the crowd and the profile of some of those in attendance is particularly important given that some ostomates struggle with highlights how the team are raising awareness in the wider world anxiety and depression. Regular exercise can help reduce stress of what it is like ‘living with a stoma’. and anxiety, which can only be a positive thing. In August we journeyed over the Pennines to Leeds and took The good news is that you don’t have to be afraid of getting active. on the Political Animals at the home of Bramley Buffaloes. The There are plenty of things you can do that are suitable for you, Animals are a club comprising politicians at all levels and from all whatever your age or fitness levels, and you can try them on your political backgrounds. own or as part of a group. It could be gardening, walking the dog We’d like to say thanks to everyone from Chorley Panthers, or even dancing! Bramley Buffaloes, and the Political Animals for their support in Stoma 66 runs from September 16 to November 20 so there is making these two games such a success. Especially Kaven Ellison, plenty of time for you to get involved. It is free to register, just visit Martyn Cheney, and Mark Ramsdale. If you’d like to find out more www.ColostomyUK.org or call us on 0118 939 1537. about our Rugby League project including playing, volunteering, or spectating please e–mail [email protected] or Everyone receives a challenge pack, with the first 500 people to call 0118 939 1537. register getting a Colostomy UK Stoma 66 t-shirt and pedometer too! Finally…don’t forget to look out for AND SHARE #Stoma66. Our last game of 2019 is on 9 November when we take on Let’s see if we can get it trending. Aldershot and Fleet Masters in Hampshire.

12 | TIDINGS 55 | AUTUMN 2019 WEBSITE: WWW.COLOSTOMYUK.ORG WELLBEING Colostomy UK: active ostomates #ActiveOstomates

Active Ostomates and support groups Since the start of the project in 2016 we have delivered nearly 200 chair yoga, archery, art, and swimming sessions to over 3,000 people through stoma support groups. Since the last edition of Tidings, groups in areas from the north east through to Yorkshire, the Midlands, the south east, Bristol and Devon have benefited from our free programmes. In August we were delighted to deliver our first chair yoga session in Scotland, through the Glasgow Stoma Support group. September also saw us hold our fourth swim event of the year in partnership with the East Berkshire Ostomy Club (EBOC) and The Windsor, Ascot, Maidenhead & Slough Stoma support group (WAMS). It follows on from earlier successful dates in Londonderry, Leicester, and Liverpool. We know that many ostomates worry about getting in the pool, so our closed sessions are a great opportunity to take a dip in Revised literature a friendly, supportive environment. We’re always looking for new venues so if you have any suggestions or would like to help us run Revised and updated Active Ostomates Sport and Fitness after a swimming session in your area please get in touch. stoma surgery booklet available. If you run a support group and would like to join our Active We have distributed over 8,000 copies of our Active ostomates: Ostomate programme, or just want to find out what sessions are sport and fitness after stoma surgery booklet since its launch being run near you please call 0118 939 1537 or e–mail: Giovanni. in 2016. [email protected] The newly revised and updated version is CUK030 03v00r00 Active Ostomates Sport and Fitness after stoma surgery.qxp_CUK030 03v00r00 18/07/2019 15:47 Page 1

now available and includes new sections Supporting and empow on modified sports along with updated ering you Active Ost advice and links to numerous activities Sport and f omates™ itness af ter stoma sur you can try. gery www .Colos tomyUK.or g #Activ

eOst To get hold of your copy either download omates it for free from our website, call us on: 0118 939 1537 or send an e–mail to: [email protected] Why not also grab a copy of our

Healthy Eating booklet too? This Freephone helpline: gives useful guidance on how to 0800 328 4257 achieve and maintain a healthy diet.

FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 55 | AUTUMN 2019 | 13 WELLBEING

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It all started in summer 2001; I was 38 I responded to the chemotherapy and the pipes duct taped to my body armour, years old and a very busy carpenter radiotherapy. I walked out of that room I waited on the start line to race (no one working on building sites. I was working in complete and utter shock, is this really would have ever known). I even cycled a too many hours and definitely didn’t have happening to me? I doubt I will ever forget 20–mile round trip to the hospital for my time to be ill (in my mind at least!). I that day, I still remember it so vividly. chemo bottle to be changed! In my opinion, remember many times urgently running For me it was important to understand exercise was the most important thing for to the loo, to find nothing but a small my body and mind. Yes, there were side splatter. As you do, I carried on as normal, the treatment and the reality of it all. With effects: sore hands, bleeding feet/finger, back to work for me. I put it down to piles the tumour being located at the exit of my toe nails as thin as paper and bleeding, the and ignored it for about six months (more bowel, I was told that if surgeons could SAVE OUR SKIN delayed effects from radiotherapy were far fool me). I remember in December I had operate and treatment was successful, I You’ll fi nd everything you need to protect vulnerable skin from the harmful effects of bodily fl uids and worse, but all bearable. the ‘big one’. While at home I had to run would be left with a permanent stoma. I adhesives with the LBF Sterile Barrier Film and LBF Barrier Cream product range. Choose from a variety of had two weeks to process the news before to the loo, just making it in time, only to After finishing all my chemo and convenient presentations including the market leading LBF Sterile Barrier Film Wipes, and the LBF Sterile commencing treatment and what a roller find afterwards I had filled the toilet with radiotherapy, I had a small explorative coaster of emotions it was: tears, self–pity, Barrier Film Spray with no touch application perfect for sore and damaged skin. blood. Following this I went to see my GP, operation. This was the big day I’d find anger and finally acceptance of the illness Contact us today to receive your free sample. on went his gloves and from then on my out my options; surgery or palliative care. world changed! and the willpower to fight it. And, before When I came around from the anaesthetic I knew it, six months of chemo followed. I Careline: 0808 301 6439 [email protected] www.clinimed.co.uk Christmas wasn’t great (an understatement also knew that after this a month of daily I was surrounded by happy smiling faces: – as I am sure you can well imagine!). My radiotherapy awaited. “Great news the treatment was a great hospital results were due the first week success”. Thankfully, the tumour had shrunk in January. January came and so did my I asked medical staff how unwell I would to nothing, but surgery was still needed to appointment. I was called into the side feel during the treatment and was told that be sure. room with my girlfriend: “You have a mass I would be so tired that I would struggle to the size of a bag of sugar...” and “..yes it’s even walk my dog! As a keen Motocross I looked at my new stoma as my friend, a CliniMed® and LBF® are registered trademarks of CliniMed (Holdings) Ltd. CliniMed Ltd. is a company cancer”. I asked would I be OK? And was rider and cyclist, this was hard to accept. I life saver. I had also been doing research registered in England number 01646927. Registered offi ce: Cavell House, Knaves Beech Way, told they couldn’t say. At this point the decided I was going to push hard to keep about colostomy irrigation and knew if I Loudwater, High Wycombe, Bucks, HP10 9QY.©2019 CliniMed Ltd. doctor was not able to give me any advice up my fitness and even carry on racing. So CONTINUED ON PAGE 17, COLUMN 1 PID 6848 Unbeatable protection for about surgery, as it depended on how with my chemo bottle in my back pack and even the most sensitive skin FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 55 | AUTUMN 2019 | 15

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WELLBEING Supporting and empowering you

Looking for online support? The Colostomy UK closed Facebook group is a safe and friendly space where you can speak with thousands of other people who live with a stoma. This welcoming community is a place to share hints and tips, stories and news and to reach out for support from other people with a stoma. Search for Colostomy UK support group on Facebook and request to join. We look forward to welcoming you.

www.ColostomyUK.org

Stoma helpline:

0800 328 4257

16 | TIDINGS 55 | AUTUMN 2019 WEBSITE: WWW.COLOSTOMYUK.ORG Quarter 01v01r00 FB Filler.qxp_Quarter 01v01r00 FB Filler 07/06/2019 11:31 Page 1

REAL LIVES CONTINUED FROM PAGE 15 COLUMN 3 Supporting and empowering you could master this, I would be able to carry on with my racing. So, three weeks after surgery and three pairs of padded shorts later, I was back on my mountain bike and three months after that I was back racing Motocross. Learning to irrigate was also coming along well, the best advice I can give (if you are interested) is learning how to do this Looking for online needs patience, logical thinking and, in the early days a bucket of soapy water and a sponge to clean up those mistakes! It support? took me about six months to fully master irrigation. For me it’s been the best thing; the perseverance was certainly worth it. I have no excrement sat there in a bag, just a small 76mm stoma cap. What’s more, the The Colostomy UK closed Facebook whole process takes me no more than 20 minutes per day! group is a safe and friendly space The next goal was to race in an off road motorcycle event over the Pyrenees in Spain, this was a two day event, eight where you can speak with thousands of hours a day in the saddle of the bike in the off again. Since this event I have completed problems. Now I say that if a problem won’t July heat and, just to make it harder…in the a further three events and I’m planning my middle of a heat wave 42°C hot at midday! change your life and will be forgotten in other people who live with a stoma. next event as I write this, all whilst carrying The sweat and dust were a bad mix for my six months, it’s simply not worth worrying on with my classic Motocross. stoma, meaning I stopped every two hours about. Life is for living, everyone has This welcoming community is a place to change my stoma cap. I didn’t always Now at 56 years old I feel so very lucky to problems in their life, some bigger, some make it in time and the cap was gone, have been through this experience. It has resulting in cleaning up with the water from opened up my mind to life and made me smaller but all very important to the person DVD Patients order form 08.qxp_DVD Patients order form 08 06/03/2019 13:58 Page 1 to share hints and tips, stories and my drinks bladder but, once sorted I was more aware of other people’s lives and living with them. ■

news and to reach out for support from

Colostomy Irrigation and You DVD l

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Fre ephone group on Facebook and request to join. surgeon/stoma care nurse as they will advise as to your suitability. helpline: 0800 328 4257 To obtain your single copy of Colostomy Irrigation and You at the special price of £1.99 (incl An educational DVD in association with A n educat ional DVD in associ ation with

| C o postage and packing) simply fill in your details below and return it with your cheque made l o s t o m y U K | E n t We look forward to welcoming you. e payable to the Colostomy UK, to: r p ri se H o | u 1 se Colostomy Irrigation 7 , 9 4 5 13 L 1 on . 1 Colostomy UK, Enterprise House, 95 London Street, Reading, Berkshire, RG1 4QA do and You no n ity St ar ree for patients ch t, R ed ea ter din gis g, B | Re erk org shire, yUK. RG1 4QA | www.Colostom www.ColostomyUK.org Title:

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Tel:

0800 328 4257 Email: Please cut along the dott Please allow 30 days for delivery.

Colostomy UK, Enterprise House, 95 London Street, Reading, Berkshire, RG1 4QA Charity No. 1113471 VAT No. 917079312 T55

FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 55 | AUTUMN 2019 | 17 WELLBEING

30 thanksye for ana amazingrs

This November marks the 30th anniversary of ® the Medilink® Dispensing and Home Delivery To ﬁ nd out more about the Medilink Dispensing Service. From just one location, we have grown and Home Delivery Service, please contact: to provide a truly personalised service FREEPHONE 0800 626388 over the phone, in homes and face-to-face in (Monday to Saturday, 9am – 5pm) 19 dispensing care centres nationwide. Email: [email protected] We’d like to take this opportunity to say a big Web: www.saltsmedilink.co.uk thank you to our loyal customers and sta Follow us: @SaltsMedilink SaltsMedilink for helping us reach this important milestone.

Be part of the celebrations and share your Medilink® memories by emailing us on [email protected]

Supporting you every step of the way because you deserve exceptional service

® Registered trade mark of Salts Healthcare Ltd. Medilink® is part of the Salts Healthcare Ltd. Group. Reference code: MA260 18 | TIDINGS 55 | AUTUMN 2019 WEBSITE: WWW.COLOSTOMYUK.ORG

18276 Medilink 30 Years_Tidings Ad A4 Stg2.indd 1 16/08/2019 16:42 WELLBEING

30 thanksye for ana amazingrs

Glen Saffery Research Coordinator

This November marks the 30th anniversary of Bowel Disease Research Foundation get the best possible support and care – challenges – be they physical, emotional ® the Medilink® Dispensing and Home Delivery To ﬁ nd out more about the Medilink Dispensing (BDRF) exists to fund research into before, during and after surgery. or psychological as people adjust to such bowel disease with a clear purpose – a major change. and Home Delivery Service, please contact: We’re delighted to be contributing to Service. From just one location, we have grown to improve the lives of people affected Tidings – and would love to hear from you by bowel cancer, IBD and other bowel Unsurprisingly, improving quality of life for to provide a truly personalised service on what you want to read about from our FREEPHONE 0800 626388 disorders both right now and in the people with a stoma – particularly reducing over the phone, in homes and face-to-face in research in future issues. (Monday to Saturday, 9am – 5pm) future. and alleviating feared complications like 19 dispensing care centres nationwide. parastomal hernia – consistently featured Email: [email protected] BDRF is the charity arm of the Association What we do – as a major priority for patients and We’d like to take this opportunity to say a big Web: www.saltsmedilink.co.uk of Coloproctology of Great Britain & Ireland healthcare professionals alike during this (ACGBI) – the professional association for prioritisation and process. thank you to our loyal customers and sta Follow us: @SaltsMedilink SaltsMedilink colorectal surgeons and specialist nurses for helping us reach this important milestone. working in the British Isles. So the chances ongoing studies In a particularly important and ground– are, if you’ve had surgery on your bowels, breaking moment, patients and surgeons In the last few years, we’ve been bringing Be part of the celebrations and share you were probably operated on and cared discussed attitudes toward stoma surgery surgeons, nurses, patients and fellow for by members of this association. your Medilink® memories by emailing us on charities together to define what our – whether this constituted a ‘failure’ in treatment or ‘last resort’, and how this sort [email protected] It’s easy to think of research as something research priorities should be – shaping our that happens in a laboratory, done by agenda for the research we fund. Through of language can make people feel. Many of people with white coats, microscopes and a series of interactive workshops, online the medical professionals in the room had Supporting you every step of the way petri dishes – but a huge amount of our voting and public surveys, we were able to their attitudes and approaches completely because you deserve exceptional service work is practical and focussed on day–to– develop a list of priority research questions changed, and research has subsequently day life both in and out of hospital. for researchers to begin to tackle. been developed to address communication and stigma. We believe our research has a massive role It goes without saying that life with a to play in making sure people with a stoma stoma comes with its own unique set of CONTINUED ON PAGE 21, COLUMN 1 ® Registered trade mark of Salts Healthcare Ltd. Medilink® is part of the Salts Healthcare Ltd. Group. Reference code: MA260 FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 55 | AUTUMN 2019 | 19

18276 Medilink 30 Years_Tidings Ad A4 Stg2.indd 1 16/08/2019 16:42 Fullx3 14v00r00 Fundraising teaser.qxp_Fullx3 14v00r00 Fundraising teaser 03/10/2018 11:50 Page 1

WELLBEING

Do something amazing! Join Team Colostomy UK. Together we can make a difference. Whether you run 5K, complete a marathon, skydive or swim the channel. Do it as part of Team Colostomy UK! no. 1113471

20 | TIDINGS 55 | AUTUMN 2019 WEBSITE: WWW.COLOSTOMYUK.ORG Fullx3 14v00r00 Fundraising teaser Fullx3 14v00r00 Fundraising teaser.qxp_Fullx3 14v00r00 Fundraising teaser 03/10/2018 11:50 Page 1

WELLBEING CONTINUED FROM PAGE 19 COLUMN 3 lifestyle with a stoma and freeing people to You can help us fuel conversations about enjoy their lives as they wish. what are the most important areas to The process helped to launch the CIPHER Study, a major national trial looking at the Excitingly, we’ve even funded a study led for address in our research and help sharpen best method of surgery to form a stoma the first time by an ileostomy patient. Her our focus. and reduce the likelihood of a parastomal work will assess what expectant mothers You can read more about that campaign, hernia. with a stoma experience when wanting and how to contribute, by following us on to start a family, while they’re pregnant, We’ve also funded work focussed Twitter (@BDRF1) and on Facebook or on on cancer patients’ attitude towards and after delivery. This will help make our website at: www.bdrf.org.uk/news/ potentially having a stoma and how this sure future patients have much better Do something amazing! affects their treatment preferences. It is an information to help them make decisions. ceoblog/hopesandfears innovative attempt to answer some of the We know that research has a huge part to pressing questions around treatment from What would you play in tackling the daily challenges of life Join Team Colostomy UK. a patient point of view, and we hope will help inform healthcare professionals about like to know? with a stoma, developing knowledge that what factors patients find important when helps people live their lives to the absolute Together we can make a difference. making decisions about their treatment. We’d like you to be part our research – and full. to let us know what aspects of our work In the last two years, we’ve teamed up with you want to read about in future issues of Please let us know what you’d like to our friends and colleagues at the Ileostomy Whether you run 5K, complete a marathon, skydive or Tidings. Research studies? Interviews with hear about in future, and we’ll do our Association and Kingston Trust to fund surgeons and nurses? Perhaps stories from best to oblige! swim the channel. Do it as part of Team Colostomy UK! even more research. patients involved in our research? These projects look at major aspects of You can contact BDRF directly via Glen everyday life. A team in Scotland are looking At a recent conference, we ran a campaign Saffery, Research Coordinator: at exercise as a method of reducing the called #BowelHopesAndFears. In it, we e–mail: [email protected] risk of parastomal hernia, aiming to show asked conference attendees and our social that patients can safely take part in a wide media followers to let us know what they Twitter: @BDRF1 range of physical exercises, removing a lot hope to see achieved through research, Facebook: www.facebook.com/ of the fear and stigma around an active and what obstacles might hold it back. BDRFCharity

Halfx3 Travel Checklist 07.qxp_Halfx3 Travel Checklist 06 01/04/2019 12:00 Page 1

Your travel checklist

r00 2 UK014 09v01 Advice.qxp_C On top of all the normal precautions, like making sure your travel 01r00 Travel CUK014 09v

you documents are in order, take copies of important documents with you in d empowering Supporting an case the originals get lost or stolen. Travel Advice event tomy should not pr Having a colos abroad om travelling at home or The ostomate needs to remember to: you fr ŐÆŸì g Hħ ġ .ColostomyUK.or ōĮŐ www ŞÆĨŞ ìŐ g ċĨāĮŐ Şċ tomyUK.or ħÆŞċ āċ www.Colos Ĉ ĮĨāĮ âÆ ì áì Ő ŞŐÆ Ş ÆŐìŐ Ÿìġ Æ ì Įā ŞĈ ţŞĈĮ ċŖ ġìŞ ŐċŞċì ³Ĉ ŞìŐ Ĉ Ŗ ÆĨ ÆŞ ċŖ ÆŖ Æ è ŞĈì ÆŖŞĮ ŖŞĮħ ċŐ ŖŞÆ ħÆʳ Æʲ āāʲ Pack sufficient supplies for your stay. At least ŖŞ Įħ Remember: Æ ċŖ á Æ ġÆèè ŖţŐĂ ìŐ ċŖ ċâÆġġ âĮĨ èċŸì ſ âŐì èċŞċĮ ŐŞìè ÆŞìè Ĩʲ ŖĮ Ş Įōì ĈÆ Ş á ĨċĨĂ Įè ċĨ Hā ċġſ Ź ŞĈì ſĮţ ÆŖŞì Æáè twice the normal usage at home. Ĩìì âÆĨ Įħì è Ĩ ʨ ˓ ì ŞĮ Ŗ á ì â ŞĈŐ ŖìĨŖ ìÆŐâ Įġġìâ ĮţĂĈ ʨ˓ h ċŞċŸì Ĉ ŞĈ Şìè ŹĈċ You can request not to go through a body āāìŐ ÆĨè ì áì ċĨ Æ âĈ ŞĈ Æ á Ş Į â ìħō ŐìŐʫ ÆĂʲ ì áĮ ʨ ˓ &Į ĮĨèţ ÆŞĈì ŞĈìĨ ŖŞĮ Źìġ ĨĮ Ş âŞ Ş Şċâʲ ōġì ħÆ ÆĨèʸ ʨ ŖìōÆ Ĉì Ŗ ÆŖìʪ ċŖ Æ ĮŐ ġġĮŹ ŐÆŞì ìÆŐâ ˎĈċèè O ŞĈì ŞĈì Ĉ ċĨ ìĨː ʨ˓ ³ ĈĮġè ĈĮġè Æ ōŐċ ìÆŐ Ă ìŐ Æ ìŐ ā ŸÆŞì ġĮŸì âĈÆ ŐĮħ ŐĮĮ Ŗʲ ōìŐĮ ŞĈìċŐ ħʲ scanner but if you do, you WILL be Ĩìʲ ħìè Take all supplies and travel stoma kit as ˓ ċâÆġ Ŗ ţōōġ b ċìŖ Æ a*ʪ Ŗ ŞĈì ſ ħÆ ſ Ĩì ìè ŞĈ ìħʲ h subjected to a full search. b a hand luggage. * & ʪ &* ʪ no. 1113471 &h h Most UK airports now operate a hidden ː b a* Ask the airline in advance if you need extra lpline: b& & Freephone he &* ʪ O conditions lanyard or bracelet scheme. ? 0800 328 4257 *¹ hand baggage for your supplies. a ʪ These are available from assistance ou empowering y Avoid food and drink that are likely to cause Supporting and

ĮġĮ reception areas. Wearing them identifies ŖŞĮħ [ ſ ĮĨè ŖŖĮâ ĮĨ ċÆŞċĮ ìĂ ŞŐììŞ Ĩ[Ş ċŖŞì ʫ ìÆ èŞŐ Őìè â èċĨ ÆèċĨ ĈċŖâ ĈÆŐ Ăʫ? ĂÆŖ ìŐŞċ ċŞſ Ĩ ʎʑ ĮġĮ ċĨŞ āċâÆŞ ţħá ŖŞĮ ìĨèì ìċŖ ìŐ ʪ ʎ ħſ èŞĮ ċĨĨĮ ʎʎʐʑʔ YʫŐì áì ŹÆ ʎʲ Į ĂċŖŞ ţŖìè ſÆħ ħōÆ ìŐìè ÆŖÆ ìèċâ Ĩ ſ Ĩ Įāāċ ĨÆċ Æġì ţħá âìċŖ èāĮ ĨèĮŐ ìŐ ʍ ÆŞ* ŐÆċŐ Ŗìħ ʒʓʏʐ ĨŞìŐ ōĮŐŞ ìĨŞ ʏʔʐʲ ōŐċŖ ŖŞÆā ŞĈÆŞ ì EĮ upset or excessive wind the day before you āʲ ĂţÆŐ ţŖìʫ Æ ʖ ĨŞìì ʒ ŖŞĈì ĈĮġ you to staff as having additional needs. èìŐĈ ÆŖ ÆŖŞĮ ħÆʲ HŞċŖ ŞĮħÆ Eìġō ġċĨìʪ èħ ʍʕʍʍ ċĨġċ ʐʏʕ travel. Ĩìʪʍ ʑʏʒʔ ċĨāĮ ʎʎʕ ʖ ̓âĮ ʐʖ ʎ ġĮŖŞ ʒʐʔ Įħſţ O If you need assistance on your flight you ĞʲĮŐĂ Pack all your normal medications and any should advise your airline at least 48 hours that may help an upset stomach. before your departure date. General Enquiries: Pack some form of electrolyte replacement O You should AVOID requesting the presence 0118 939 1537 solution in case you become dehydrated. of a healthcare professional if you are searched. Airports do not generally have Monday to Thursday Drink bottled water, avoid ice in drinks and 9am – 5pm and such staff on standby and the likelihood is use boiled or bottled water to clean around that you will miss your flight. Friday 9am – 3pm your stoma, and to irrigate in countries or where water could be contaminated. O You can only take more than 100ml of liquids in your hand luggage if there is a E-mail: Store your supplies in a cool place, out of prescription label on said item. [email protected] direct sunlight. [email protected] | Date of Publication: January 2019 Copyright ©2018–2019 Colostomy UK Registered charity O You should expect to be treated the same ‘Check in’ online 24 hours before as everyone else. Having a stoma does not Website: 0118 939 1537 departure to secure your preferred seat. exclude you from any security checks. www. ColostomyUK.org

FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 55 | AUTUMN 2019 | 21 Fullx3 14v00r00 Fundraising teaser WELLBEING Irrigation and you

Richard Biddle Writer and Researcher E: [email protected]

If you have any questions, comments or experiences of irrigation you’d like to share please send an e–mail to: [email protected] or write to me at Colostomy UK.

Fear, fun and finding your feet…

PART all part of the experience TWO Trevor Alexander

In the last issue of Tidings, Trevor wrote about his cancer diagnosis and how he came to terms with having a stoma. He ended with the words: “my friend gave me a copy of Tidings and I discovered…” what he discovered was that irrigation was the solution to his problems of irregular output and pancaking…

I spoke to my stoma nurse to find that few people in the area This can also be taken to hotels and attached to bathroom tiles; no irrigated, but she explained the process and agreed to order hotel I’ve visited ever has a hook at the right height. me a kit and let me try. When it arrived from Coloplast she gave I have had several other interesting experiences apart from the kit me a lesson on how to put it together and supervised me using falling off the wall. The worst one was self–inflicted when I went it. When she was happy I was competent, I was sent away to try to Tenerife for two weeks and forgot to take the plastic sleeves that on my own. My initial solo effort was a little like going back to the act as a chute for the waste to fall into the toilet. Amazing what can beginning again. Firstly, the reservoir had to be filled with water at be engineered with a pedal bin liner. You can see why a sense of the right temperature, sounds easy in theory but in practice proved humour is necessary! to be anything but! The reservoir outlet also has to be positioned at least shoulder height and, as my bathroom hook wasn’t, the The irrigation system has revolutionised my situation. Now, to a first thing I had to do was to get a new hook. Unfortunately I didn’t large part, I am back in control of my life again. Once I had got used account for the weight of the reservoir (which starts with up to to the process (which is very easy) it meant I could use it at a time a litre and a half of water in it). So my advice is don’t use a self– to suit me and be confident for the next 24 hours at least. There sticking hook. I made this mistake and when the hook fell off the are less obvious advantages too. Large bags can be discarded and wall just as I inserted the cone into my stoma there were some I now use mini bags which are much more comfortable and easily choice words as the bathroom flooded! I’m philosophical about take care of any small discharge that may happen occasionally this now. Like all new things a sense of humour is required when during the day. This is quite rare and is usually self–inflicted by learning a new skill. Once a new hook was screwed into the wall I eating something silly or drinking too much red wine! I will not found the whole process a revelation. I eventually found the best go into the process of irrigating in any detail as this is much better reservoir support was the suction support from my car Sat Nav. explained by a professional, but rest assured it is quite painless!

22 | TIDINGS 55 | AUTUMN 2019 WEBSITE: WWW.COLOSTOMYUK.ORG WELLBEING

Do you irrigate? If not, are you interested in trying? If you feel you would like to try irrigation you should first contact your stoma nurse to see if you are a suitable candidate. If you get the go ahead they will then arrange a time to teach you. For more information see the Colostomy UK website or purchase the Irrigation and you DVD using the form overleaf.

The first six months of irrigating were successful, but there were a So that’s my story! I’m sure some of the issues will be familiar to couple of drawbacks. I found that the reservoir was quite a clumsy others. It’s now three years since my operation and I can honestly piece of equipment and sometimes the water flow was slow or say that since I have moved onto irrigation with the pump I have erratic. The flow could be controlled by a trigger mechanism with a never looked back. If you have never tried irrigation I would visual plastic spinner, but sometimes, even when fully open, I had recommend you give it some serious thought and give it a try, trouble with the flow into my stoma. maybe with a kit first. It’s a discipline which I have found easy. It takes me about 30 minutes from start to finish and has become an The final piece of the jigsaw fell into place when I read a short add on in the morning before my shower. readers letter in Tidings which recommended an irrigation pump. I’m now looking forward to the ten years that Mr Slater, my The one in the letter was made by B.Braun so I visited their consultant, promised me! website, had a look and sent for the information brochure. To buy the pump is quite expensive (approximately £500) but I discovered Trevor Alexander that it was available on prescription with my doctor’s approval. Newcastle–upon–Tyne This didn’t prove to be as straightforward as I had hoped, because my GP practice had never been approached for one before. My CUK015 05v00r00 An Introduction to Irrigation.qxp_CUK015 05v00r00 18/07/2019 16:09 Page 1 Revised telling them how good I thought it would be didn’t cut much ering you ice and initially I was politely told ‘no’. However, I am nothing if Supporting and empow irrigation: literature not persistent and contacted the local rep for B.Braun who was Colostomy Revised and updated incredibly helpful and set up a meeting with both my doctor and An introduction

g yUK.or Colostomy Irrigation: olostom my stoma nurse. This helped them to appreciate the benefits www.C An Introduction booklet of the pump and eventually resulted in one being provided on available. prescription. The newly revised and The pump proved to be the answer to both the problems I had updated version is now encountered and also considerably cut down the time required. I available. To get hold of your don’t wish to be seen as a salesman for B.Braun Iry Pump but it is a copy either download it for superb piece of equipment and the service has been magnificent. Stoma helpline: free from our website, call The pump decided to stop charging when I was touring Italy last 0800 328 4257 us on: 0118 939 1537 or

ering you year and after a phone call a new pump was dispatched and was Supporting and empow send an e–mail to: at my next hotel the following day. [email protected]

FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 55 | AUTUMN 2019 | 23 REAL LIVES

Nobody would claim that stoma surgery Active Ostomates project and the recent feelings of relief when she mastered bag is a walk in the park. The body can addition of creative minds art sessions to changing. Shortly afterwards, buoyed by take months to heal. Ongoing stoma our offering. But, despite these advances, how she was coping, Vicky made her first management is the next concern as well we would be the first to concede that more trip out. But an incident at weight watchers as dealing with the likes of leakage and needs to be done, both to understand the changed everything and made Vicky realise sore skin. Issues which, as we know, have impact that stoma surgery can have on that she was far from recovered: “I was a habit of returning with changes in body mental health and to help those that suffer. sitting there and my bag made a noise. I weight and stoma size. Thankfully, there is Moving forward, everyone needs to work was mortified, but tried to act normal and plenty of help out there. As editor of Tidings towards creating an environment where ignore it…that was until the people by me I am fortunate enough to have access to mental health can be spoken about openly. laughed and made unpleasant comments. every edition since the magazine’s launch This will need courageous people. People I left in tears, not wanting to return or, in 1998. I can tell you, it is a treasure trove. willing to share their experiences, people in fact, leave the house for fear of this In fact, it is testimony to the wider efforts like Vicky Sykes, who I had the pleasure of happening again”. Vicky found herself in made over the past two decades to interviewing a few months back. a situation where her body was healing make things just a little easier Vicky is 44 years old and has two well but mentally, (to use her own words), for each new ostomate. stomas. She has named them she was a “mess”. She worried constantly And, this quest goes on. ‘Ping’ and ‘Pong’, hence the about leakage, noise and smells. She also Surgical techniques keep title of this article and the started to develop irrational fears about developing. Ostomates rather esoteric front cover using public toilets. Bag changing wasn’t continue to draw on the to this Tidings. Her story the issue. Instead Vicky worried what collective experience illustrates perfectly why people using the facilities after her might of our volunteers. As we need to get better think. I’m sure many readers will be able to a charity we are also at talking about mental relate to how Vicky felt at this time. But in involved in research on health and stomas. Vicky’s Vicky’s case, it led to her becoming a virtual everything from parastomal story began when she was recluse. hernias (CIPHER study) to 25 years old and suffered a Vicky can’t put her finger on a particular pancaking. The stoma companies spinal injury. This occurred from a moment or incident but, over time, continue to play their part too; think of simple, but tragic accident. Her son, who something changed. Perhaps the critical bag technology and how the latest designs was a baby at the time, had just woken thing was that she began to accept there have moved on from those described by up and Vicky was carrying him downstairs, was a problem. This led eventually to Vicky Lynda on page 28. when she lost her footing. The injuries giving herself “a good talking to”. I told However, there is another side to having she sustained didn’t require emergency myself: “So what! I have a bag. We all go stoma surgery. Indeed, Vicky had her loop a stoma which, until very recently, was to the toilet; I just do it in a different way”. colostomy 14 years later. It was performed rarely spoken about…and that’s the affect As this fresh mind set became embedded as the final option, after other procedures it can have on mental health. The silence Vicky started to cope again, helped by and medication had failed. This gave Vicky has much to do with the general stigma the ever present support of her family. plenty of time to research what the surgery surrounding mental illness, the edifice of As a mark of how far she had come, she entailed. But, as she said, you can only which has only recently started to crumble. plucked up the courage to go on holiday prepare so far and she still remembers But progress is being made. The positive and even took the brave step of wearing waking up afterwards, seeing her stoma links between being active and mental a bikini. Vicky says that although she still and thinking: “I can’t do this!”. wellbeing are now widely acknowledged. harboured paranoid thoughts, she had Indeed, research findings in this area have Of course this is not an uncommon recognised that if she didn’t start to think been important shaping Colostomy UK’s reaction. Nor were Vicky’s subsequent and act differently, then her stoma was

24 | TIDINGS 55 | AUTUMN 2019 WEBSITE: WWW.COLOSTOMYUK.ORG REAL LIVES My two stomas ‘Ping’ and ‘Pong’ Vicky Sykes

going to take away her life. It might have look down at my stomach area and think now in a better place and firmly believes helped her ‘physical’ body, but it was in everyone would hear the urine”. As Vicky’s that mental scars can heal just like physical danger of destroying her mental wellbeing body started to heal, her mental struggles ones. If you are suffering then her advice and sense of ‘self’. intensified: “I would wear layers of clothes is simple: no matter how hard it is, try to and hold my stomach to hide the two bags, pluck up the courage to talk to people Sadly, as Vicky started to cope, so it even though I knew they were covered. I around you about how you are feeling, became clear that her loop colostomy had constantly gave excuses to my family and not resolved all the problems from her rather than hiding away. friends if I got invited out. I remember spinal injury. In 2018 she was told that doing the first post–op school run. I got to Vicky was keen that people learn from her she would need a bladder diversion and a the school and just wanted to turn round experiences. From my point of view she second stoma (urostomy). This was a great and run back home. I sat in my car frozen, I has succeeded. Vicky’s story helped me shock and a devastating blow. But Vicky couldn’t move. My son had to be taken into to appreciate the far reaching implications says she still managed to stay positive (at school by another mum”. that poor mental health can have, not just least at first). Despite dreading the thought for the sufferer but for those around them. of more major surgery, she was doing This was a very dark time for Vicky. Her This reinforced my view that more needs well with her first stoma and thought: “If relationship with her husband also started to be done, with mental wellbeing figuring I can cope with one, I can cope with two”. to suffer, as she found herself wanting to just as prominently as physical wellbeing in However, Vicky found things much more hide away from the man who loved her. the aftermath of stoma surgery. This means difficult second time round. She suffered Perhaps it was this that triggered something talking about the fact that mental health can with infections and soreness. She also in Vicky again. She began to realise what take a knock and equipping patients quickly discovered that management and was at stake and that if she didn’t and their families accordingly – care of a urostomy is more intense than a act, then she risked losing both to spot the signs and to colostomy. It took a while to find the right everything. Just like before, know what interventions bag and all the while she was leaking daily Vicky made the decision are available. The and the skin around her new stoma was to fight her negative coping strategies that sore with blisters. Hearing this, I wasn’t thoughts and grasp back Vicky developed also really surprised when Vicky said that all her her life. I asked her how spoke to me about the old fears returned and “with full force sent she managed to do this responsibility we have for her flying backwards”. So much so, that she and her answer was: our physical and mental began to push away her family, who were “Little steps. One day at health. Finally, Vicky’s desperately trying to support her as best a time”. One strategy she they could: “they would say to me ‘you are developed was to try and incident at weight watchers what you are’ and ‘what you have makes change one negative thought into (which seemed to ‘tip the you’ – but to me these were just words”. two positive thoughts in the hope that balance’ of an otherwise promising this would help her to begin embracing recovery), made me realise how important The physical recovery was slower this time life with two stomas. It was this that led to it is that Colostomy UK continues to raise round. Its impact on Vicky’s mental health the naming of her stomas ‘Ping’ and ‘Pong’. awareness through its ‘Stoma Friendly can be measured by the fact that she was She also did her best to imagine what her Society’ campaign. It’s more than just pleased. When she said this I was taken life would have been like if she had tried seeking practical changes to things like aback, immediately wondering why this to carry on without having stoma surgery. public toilets (important as these are), was the case? Vicky explained: “I was glad Gradually her efforts paid off, although it’s also about educating people to think my recovery was slow as I saw this as a Vicky was at pains to point out that the before giggling. way of living in my little bubble and hiding road wasn’t straight and level, but bendy away from the outside world. Just walking Written by to the local shop was a challenge. I would and with plenty of dips. Thankfully, Vicky is Richard Biddle

FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 55 | AUTUMN 2019 | 25 COLOSTOMY UK NEWS Our BIG Open Day: report

On a sunny day in late June the traffic halted in Telford. The birds stopped singing, people in the streets, shops, parks and bars paused, homes were quiet. The town wondered: “who are all these visitors heading to the International Centre, what’s this vibe?” It was, of course, members of the ostomate community travelling from up and down the country to help us enjoy our BIG Open day. OK, perhaps I’ve exaggerated slightly, but one thing is certainly true…people did travel ‘up’ the country this time. Following feedback we moved our bi–annual event to a more geographically central location. Telford was a good choice also, because it gave us a chance to increase the visibility of Colostomy UK in Shropshire. As we hoped, our BIG Open Day turned out to be a fun and friendly event. Mandi Laing, our new chairperson, got proceedings underway. She was followed by our president, Ian Daniels FRCS (consultant colorectal and general surgeon), who gave an interesting talk about stomas and stoma surgery. Attendees were then free to visit the exhibitors’ stands, participate in the various workshops we ran, grab a coffee and chat to friends, or say “hello” to the Colostomy UK team! The collage of pictures should give you a good idea of what went on. There was a chance to try out chair yoga, explore one’s creative side through one of our Creative Minds sessions, or put questions about diet and nutrition to dietician Sophie Medlin. The security team from Manchester Airport and Customer Assistance providers Omiserv were also on hand to answer questions about air travel and airport security. Finally, if that wasn’t enough, there were appointments with stoma care nurses available.

26 | TIDINGS 55 | AUTUMN 2019 WEBSITE: WWW.COLOSTOMYUK.ORG COLOSTOMY UK NEWS Our BIG Open Day: report

For those that were able to stay, we rounded the day off with an Ostomate Fashion Show followed by a delicious evening meal. As always, the fashion show, the theme of which was ‘The Four Seasons’, proved very popular and we are grateful to ConvaTec for sponsoring this. Our models, all of whom had stomas, graced the catwalk in everything from formal attire to sportswear and received a well–deserved round of applause at the end. The evening was made all the more special as it gave us a chance to formally recognise and thank people for all they have done for the ostomate community. The stoma care team at Queen Alexandra Hospital Portsmouth, were presented with Colostomy UK’s Purple Iris Award. Colostomy UK trustee, Alfred Levy received an award for his long– serving contribution both to our charity and also ostomates in the Stevenage area. Our volunteer Irene Constable received the award for the most active volunteer in the last year. As well as answering the stoma helpline and attending open days on our behalf, Irene runs BOTs support group in Oswestry, Shropshire and has been campaigning tirelessly over the past 12 months or so to make the area stoma friendly. Finally, Jo McKenzie, our Senior Support Coordinator, was recognised for her long service. She has worked for Colostomy UK for nearly 20 years now. Chances are, if you have ever called us, then it’s Jo you will have spoken too!

Thank you to everyone that was able to come along, it was great to see you all!

Written by Richard Biddle

FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 55 | AUTUMN 2019 | 27 REAL LIVES

January 1968: almost the end of the tight in the hope that nothing leaked. But bed. Matron appeared and gave a nod of ‘swinging sixties’ and my final year at IT DID, constantly! My skin was raw from stern approval. Only then, after having been Secondary School. I was 15. I had been leakage. Because the operation had been kept waiting sometime in the corridor, did feeling unwell for some weeks now. delayed so long, the ulcerative colitis (which my visitor come in. It was the great man, Tummy pains almost every day, usually was the cause of my illness) had got so bad Bobby Charlton! on my walk to school. Then blood in my that much of my bowel had to be removed. faeces. The pains were getting worse and My stoma is thus sited almost level with my He told me to get well and come to a game more frequent. Mum took me to the GP. hip. This meant (and still does) that when to meet the players. He brought a card from Tests began. Hospital visits and those I sat or bent it creased, causing leakage. At George Best and some European pennants dreadful barium enemas and x–rays. I was that time, the nurses used ether or meths from the games United had played. They soon admitted to Macclesfield Infirmary. to clean the skin, then applied tincture of were in the final of the European Cup Too old for the children’s ward, I had to benzene to dry the area. OUCH!! in May 1968. Bobby stayed almost an go on the adult ward. I was so frightened hour and chatted about football and me. and alone as many of the patients were I was depressed. I was in pain. My bag was Unbeknown to me, he gave me back my elderly women. The surgeons were leaking every day. I had been bed bound will to live and an excitement for the future. trying desperately to stem the increase for so long my muscles were not working. HE SAVED MY LIFE! I left hospital three days of symptoms with medication, including I was stuck in a ward where people died before the game in May 1968. heavy doses of steroids and blood because of their ages and conditions. My Three months later…and I was not coping transfusions. The loss of blood was now Mum and Dad visited daily (only two visitors well with the dreadful bags. A leak every quite heavy and I was going downhill fast. at a time). The staff were amazing and tried night and most days wasn’t doing my skin Their desperation was apparently the worry many ways to improve the bag situation. any good. I was never introduced to a that, at that time, I would be the youngest The one thing that did cheer me up were stoma nurse, if indeed there were any, so person in the country to have ‘the stoma’. I occasional letters from Dorothy, who ran had no support apart from the Ileostomy weighed four stone and time was running a fan club for Manchester United. I LOVED Association which could only be contacted out. The operation was scheduled for 20 Man U and Georgie Best. But the Surgeons via post. I can’t remember who it was February 1968. and nurses alike were very concerned. that advised me to change bag type, but I was (apparently) dying. I was too weak I was grateful, even though I look back Following the operation, life was a blur. I to fight. But things were happening in the now on the period in horror. The new bag had tubes, pipes and drips attached, and I background... was medicated into oblivion. I spent three was a two–piece black rubber bag with a months in that ward, in that hospital. My One day, a couple of weeks after Dorothy baseplate stuck on with a form of glue. To first ‘bag’ was a ‘one–size fits all’ foam ring, visited me, I was hauled out of bed, clean keep the bag in place there was a white with a clear plastic bag threaded through nightie, hair brushed. Cleaners came and belt, which attached to the baseplate. To and a hard white plastic ring to secure it. dusted and hoovered the ward to within an empty the bag I had to unscrew a cap at Then I had a belt to hold the whole thing inch of its life. Screens were put round my the bottom (imagine the mess…). I did,

28 | TIDINGS 55 | AUTUMN 2019 WEBSITE: WWW.COLOSTOMYUK.ORG REAL LIVES NEVER GIVE UP: From Bobby Charlton to family of three! Lynda Smith

however, keep these bags for a number of had to be packed from what had been my was under my bump I could manage the years. As well as the belt securing the bag, back passage with paraffin packing. On changes. I was awake during the caesarean I also wore the kind of sanitary pads which leaving hospital this had to be replaced and the medical team were amazing. were secured using a belt (those were the daily; a procedure that still brings tears to Obviously, trying to find an area to cut days) so had to be careful not to unfasten my eyes. Eventually though, life returned to was a little tricky, but they managed it. I’m the wrong belt ha ha! normal. rather proud of the map of the world I now have on my tummy! Our son was the most That brings me to the next problem I had. We had been trying to conceive for around beautiful baby, but did have to spend 11 The surgery left me with a vaginal fistulae. 17 years and, on reaching age 38, I was days in neo–natal for a breathing problem. I didn’t know this at the time. My periods pretty sure it wasn’t meant to be. Around didn’t resume for some time, but when this time I started to feel quite poorly, with Being born at 38 weeks his lungs were they did the secretions came both from the dizziness and tiredness and, not having a a little immature. He is now a strapping normal place and the hole that had been period for some time, I decided to make a 1.8m man of 30! We then went on to have my back passage. This was because the doctor’s appointment. The menopause was another boy two years later. No special care fistulae was sited between the two. Normal at the back of my mind and so I took urine for him, and another fine young man of 27! sanitary protection wasn’t quite enough sample with me, as I remembered from a Sadly, my repair broke down after the and led to some awful, embarrassing, friend that this was how she was told the second pregnancy and I am too much of a situations (never wear white became my menopause had started. My GP is a good wuss to go down the road of further surgery. mantra). I became quite good at adapting friend. He did the usual tests and asked me I cannot pretend that the intimate side of nappy liners and cotton wool to form a to go to waiting room while he tested the our marriage isn’t difficult because of this, longer pad. urine. When he called me back in, he had but my husband is very understanding and tears in his eyes. He said the words I never This fistulae caused the biggest heartache we ‘adapt’. Neither of us has ever looked thought I would hear: “You are pregnant of my life. When I eventually found the back. The joy of having a family has far Lynda”. I burst into tears but the bubble was man and the confidence to marry, I outweighed what I had to go through to burst slightly when he said: “but don’t tell desperately wanted children. We were get there. I couldn’t breast feed, but that many people, as you probably won’t carry it foster parents for a while and eventually was more to do with my son being in neo full term!” Well I did! To 38 weeks anyway, adopted our daughter, but I could not natal than me having a stoma. And, having as I had to have an elective caesarean. The conceive. Apparently, the fistulae was THE a stoma never got in the way of bringing surgeon who performed it was also my best contraceptive…I was under a brilliant up a young family. I would thoroughly obstetrician and he was delighted beyond gynaecological surgeon who undertook recommend it and my message to any words. My husband, daughter and all our a procedure to repair the fistulae. This women reading this who are in a similar families were just over the moon. involved a kind of patchwork repair as the situation as I was all those years ago, is fistulae could not be sewn together. The My stoma behaved perfectly during my NEVER give up. As I write this, we are busy operation wasn’t too bad but the wound pregnancy. It popped up slightly, but as it planning both of our sons’ weddings! ■

FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 55 | AUTUMN 2019 | 29 Unity FP 09.qxp_Unity FP 09 05/09/2018 14:23 Page 1

Step three – Complete the direct debit instruction or Or by phoning the Unity winners hotline enclose a cheque. Detach the form, put it 0370 055 2291 into an envelope and return to Unity to the Calls cost no more than calls to geographic numbers 01 or 02. address shown on the right panel. Unity will You must be 16 or over to enter. notify you of your Unity lottery number. 5 Prize Entries 3 Prizes £25,000 6 digits £1,000 5 digits £25 4 digits in the next draw digits

1. Your details (please print in block capitals) 3. Select your Payment method Title: First Name: I enclose a Cheque made payable to Unity Payment by Cheque (minimum payment £13) Surname:

Registered with Read ing Borough Council Registration number: LOT000141 Address: | Direct Debit Please fill in the form and return to Unity Name and full postal address of your Bank or Building Society.

To: The Manager: Bank/Building Society Postcode: Address: Tel: Mobile:

D.O.B.: If you would like to receive correspondence via email, please tick here Postcode: Email:

Name(s) of Account Holder(s) If you do not wish your name to be publicised if you win, please tick here

Branch Sort Code: Bank/Building Society account number 2. Payment Frequency Banks and Building Societies may not accept Direct Debit instructions for some types of accounts. How many entries would you like each week? Instruction to your Bank or Building Society to pay by Direct Debit

Monthly £4.34 Direct Debit only Service User Number How often do you x Reference: 4 2 1 1 0 2 want to pay? Every 13 wks £13

(please tick payment Every 26 wks £26 Instruction to your Bank or Building Society frequency and write Unity amount in box) Please pay from the account detailed in this instruction subject to the safeguards assured Every 52 wks £52 = by the Direct Debit Guarantee. I understand that this instruction may remain with Unity and, if so, details will be passed electronically to my Bank/Building Society.

Total Payable Signature: Date:

Occasionally, Colostomy UK may send you samples and information (I confirm I am 16 or over and resident of GB) 4. Your consent to Play that may be of interest to you. We do not pass on your details but Signature: Date: may use them to keep you informed of what else is available. If you would prefer not to receive these, please tick the box.

For office use only: Detach the form, put it into a stamped envelope and Post this form in a The Unity Lottery stamped envelope to: Furness Gate return to Unity at the address shown on the right. They Peter Green Way will notify you of your Unity lottery number. Furness Business Park BARROW-IN-FURNESS LA14 2PE T55T51 The promoter of this Unity lottery is Colostomy UK, Enterprise House, 95 London Street, Reading, RG1 4QA 30 | TIDINGSThe 55 Unity | AUTUMN Lottery, Furness 2019 Gate, Peter Green Way, Furness Business ParkBarrow-in-Furness | T: 0370 050 WEBSITE:9240 | E: info@unitylott WWW.COLOSTOMYUK.ORGery.co.uk 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 Unity FP 09.qxp_Unity FP 09 05/09/2018 14:23 Page 1

SUPPORT Win up to £25,000 with Unity 50p from ever Unity is a lottery with a difference. We receive income directly from the number of Colostomyy £1 goesUK to lottery players we recruit, so we need your support. For every £1 entry – 50p comes directly to Colostomy UK. How it works Your letters and e–mails Unity For just £1 per week you will be allocated a six digit lottery number. You can purchase more than one entry if you wish. Every Ed’s note: Jane R’s letter on prescriptions and the new Saturday, the lucky winners are selected at random and the prize cheques posted directly to you, so there is no need for you to claim. You must be 16 or over to enter. Winners have to match 3, 4, 5 or all 6 digits of the winning number in the correct place in the sequence. formularies (Tidings – summer 2019) struck a chord with many How to join – three easy steps readers. Below are just a couple of the letters we received. As I explained on page 3 Colostomy UK is aware that the changes Step one – Complete your personal details - so that we can If you have any queries please call our hotline on are causing concern. On a separate matter, we were pleased contact you if you win. 0370 050 9240 to receive Sheila B’s letter. As you probably know, our stoma– Step two – Select the number of Unity lottery entries you Results & Rules can be checked by visiting friendly toilet campaign is now in its third year. Sheila’s letter wish to purchase per week and how often you wish to play. www.unitylottery.co.uk re–states the importance of this work.

Step three – Complete the direct debit instruction or Or by phoning the Unity winners hotline In your position as Colostomy UK are you stated the case for my ongoing ordering enclose a cheque. Detach the form, put it Dear Sir/Madam 0370 055 2291 able to take these concerns to a higher requirements. I came away with a list of into an envelope and return to Unity to the I would like to add my experience to those Calls cost no more than calls to geographic numbers 01 or 02. level to explain the needs of ostomates? products with agreed maximum monthly of Jane R in the recent edition of Tidings. address shown on the right panel. Unity will You must be 16 or over to enter. ordering amounts. I had to argue like Yours faithfully Jane R for some products in order to notify you of your Unity lottery number. I too have had problems trying to obtain Angela K a prescription from my doctors for what preserve my skin, around in particular my 5 Prize Entries 3 as an ostomate you would consider quite Dear Tidings enterocutaneous fistula, including adhesive 6 digits 5 digits 4 digits Prizes £25,000 £1,000 £25 in the next draw digits a reasonable request. I have had my I feel I must respond to the item by remover spray and barrier wipes. ileostomy for over 37 years, have moved Jane R (Tidings Issue 54 Summer 2019) I agreed a set procedure with my online house a number of times and until recently “…decisions of the CCG on stopping stoma supplier that I would order on a specific 1. Your details (please print in block capitals) 3. Select your Payment method have not had any issues. items”. Title: First Name: I enclose a Cheque made payable to Unity date each month only those items that I Payment by Cheque (minimum payment £13) Surname: I have been with my current GP practice for As a long term ostomate, with three bags required, never exceeding the quantity four years, it is a very large practice and I stated as the maximum amounts already

Registered with Read ing Borough Council Registration number: LOT000141 stuck across my abdomen, I too have Address: | Direct Debit Please fill in the form and return to Unity Name and full postal address of your Bank or Building Society. have only once had an appointment with had what may be described as a run in agreed. Thus far I have NOT had any To: The Manager: Bank/Building Society an actual GP. No one has asked me any with my local CCG. Way back in 2016 the additional problems re continuing supplies Postcode: Address: questions about my ileostomy or about the powers that be decided to adjust the Joint of stoma care products. Tel: Mobile: supplies I need to live a normal daily life. Formulary regarding the supply of Stoma care products. So, my advice to anyone facing a cut down D.O.B.: If you would like to receive correspondence via email, please tick here Postcode: Recently they installed a new online system of their product needs is; firstly, ensure Email: and at that time some of the items I use My initial experience was somewhat like that you contact your Stoma Care Clinical Name(s) of Account Holder(s) If you do not wish your name to be publicised if you win, please tick here but not regularly, depending on output, that of Jane R, in that I was informed that Nurse Specialist, to explain what you need Branch Sort Code: condition of skin etc, have been removed I could only order this or that particular and why! Ideally have a numerical history Bank/Building Society from my re–order list. When I try to ask for number of the product in question; this account number record of what you have used in the past. an item to be added, I must justify why I being discovered when my online order 2. Payment Frequency Banks and Building Societies may not accept Direct Debit instructions for some types of was not agreed between my GP and accounts. want it to an assistant who does not even Secondly, every NHS/CCG Joint Formulary How many entries would you like each week? the Supplier, my GP having declined the is different, but all contain the following Instruction to your Bank or Building understand what an ileostomy is, and Society to pay by Direct Debit usually within earshot of the rest of the amount ordered by me. statement in regard to Stoma Care Service User Number Monthly £4.34 Direct Debit only waiting room. On one occasion I was told Accessories: “There will be some patients How often do you x Reference: 4 2 1 1 0 2 After investigation with the GP Practice want to pay? on a named patient basis that will require Every 13 wks £13 the box of rings I requested and had used Manager I contacted the appropriate (please tick payment before, would probably not be approved as products outside of the formulary to Every 26 wks £26 Instruction to your Bank or Building Society person in the correct department of the frequency and write they were too expensive and an alternative manage complex problems or sensitivity to Please pay Unity from the account detailed in this instruction subject to the safeguards assured CCG to explain my problem, this being the amount in box) Every 52 wks £52 = by the Direct Debit Guarantee. I understand that this instruction may remain with Unity and, if would be issued. I insisted that this was Pharmaceutical Advisor of the Medicines product/s”. so, details will be passed electronically to my Bank/Building Society. not appropriate and if that was to happen, Management Team. This statement allows you to argue for the Total Payable Signature: Date: I would expect a call so we could discuss specific item you require and provided that the matter. After a few days the prescription After explaining my problems to them I was Occasionally, Colostomy UK may send you samples and information the Stoma Care Clinical Nurse Specialist 4. Your consent to Play (I confirm I am 16 or over and resident of GB) was issued but the item is still not on my asked to contact my Stoma Care Clinical that may be of interest to you. We do not pass on your details but agrees with your clinical need you will get it. Signature: Date: may use them to keep you informed of what else is available. If you re–order list. Nurse Specialist in order to express my would prefer not to receive these, please tick the box. physical needs of several particular stoma It would appear that some CCGs around For office use only: Luckily, I always ask for items in advance Detach the form, put it into a stamped envelope and Post this form in a The Unity Lottery care products and the quantities involved. the country have not explained their actions stamped envelope to: Furness Gate as I know I am going to have this battle, return to Unity at the address shown on the right. They regarding the use of new Joint Formularies Peter Green Way or otherwise I too feel I would be making Having gone through the correct procedure will notify you of your Unity lottery number. Furness Business Park to the end user the Ostomate! BARROW-IN-FURNESS regular visits to the stoma care nurse or all my problems were resolved following LA14 2PE T51 wound care clinic. a meeting with my Stoma Nurse where I CONTINUED ON PAGE 33, COLUMN 1 The promoter of this Unity lottery is Colostomy UK, Enterprise House, 95 London Street, Reading, RG1 4QA The Unity Lottery, Furness Gate, Peter Green Way, Furness Business ParkBarrow-in-Furness | T: 0370 050 9240 | E: [email protected] FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 55 | AUTUMN 2019 | 31 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 Colostomy UK literature range Have you seen our extensive range of support literature? Suitable for ostomates, family members, friends, carers and healthcare professionals. To order your complimentary copies contact us by:

adminline: eMail: website: 0118 939 1537 [email protected] ColostomyUK.org/information

CUK030 03v00r00 Active Ostomates Sport and Fitness after stoma surgery.qxp_CUK030 03v00r00 18/07/2019 15:47 Page 1 CA020 04v00r00 Caring for Colostomates.qxp_CA020 08/03/2016 12:30 Page 1 CUK056 02v00r00 Caring for a person with a stoma and dementia.qxp_CUK056 02v00r00 12/06/2019 09:05 Page 1 CUK018 07v00r00 Colonoscopy through the stoma.qxp_CUK018 07v00r00 11/06/2019 14:01 Page 1 CUK016 06v00r00 Healthy Eating.qxp_CUK016 06v00r00 13/06/2019 09:31 Page 1

SupportingSto manda empow-frieringen yoduly Supporting and empowering you Supporting and empowering you society Get in As well as raising public awareness about touch Caring for stomas, this campaign is also about ensuring Big or small, we will use that the everyday needs of people with ™ We hope this short booklet has stAomctivas (ostomeat eOsts) are caomattered for. Thesis yoguivre ng yiofut ai nfla avo urre osf pColonsstoimbyle, Colostomates Caring for a person with Colonoscopy Healthy eating means encouraging businesses and UK’ss ucasmtpaaiingnasb anled paronjedcts. Campaigns organisations to make practical changes to a stoma and dementia Sport and fitness after stoma surgery impactf ul way. through the stoma – Nutritional guidelines for everything from the signs they use to the To see all the latest news and facilities they offer. and projects a patient’s perspective people who have a stoma deIfv eylopum heantvse, j uasnt yvi sqitu oeusr twioebnssit ea: wwwO.Colosur stoucmcyUK.oressesg s o f a r i n c l u d e : #ActiveOstmomatemesber of ou r team will be A practical guide for www.ColostomyUK.org www.ColostomyUK.org www.ColostomyUK.org more than happy to help. www.Colost omyUK.org staff in Nursing and Accessible Toilets If you have ideas for future Residential Homes and You can find 'stoma friendly' toilets and/or campaigns and projects then we improved signage in the following locations: would love to hear from you too: those who care for a Salisbury City, Côte Brasserie, INTU shopping centres, colostomate at home Sainsburys, Waitrose, Lord's Cricket Club, Great Dawley Town adminline: 0118 939 1537 Council, Tesco, Asda, Medway [email protected] Park, Morrisons, and many more. Telephone: 0118 939 1537 [email protected]

Air Travel Ostomates get anxious going through airport security. In order to make air travel accessible to all, we are working with: 24 Hour Helpline:

The Civil Aviation Authority and 0800 328 4257 lots of UK Airports and their staff, including Heathrow, FrGeephoneatwick, S thelpline:ansted, Edinburgh, Stoma helpline: Stoma helpline: Stoma helpline: Birmingham, Manchester, Cardiff and Bournemouth. www.ColostomyUK.org SUPPORTING AND 0800 328 4257 24/7 stoma helpline: 0800 328 4257 0800 328 4257 0800 328 4257 www.ColostomyUK.org EMPOWERING PEOPLE 0800 328 4257 www.ColostomyUK.org WITH STOMAS www.colostomyassociation.org.uk

Active Ostomates Campaigns & Caring for Caring for a person Colonoscopy Fundraising Healthy Eating Sport and Fitness Projects Flyer Colostomates with a stoma and through the Pack after stoma surgery dementia stoma

CUK012 07v00r00 How will a Colostomy affect me? (CLiP).qxp_CUK012 07v00r00 28/08/2019 12:08 Page 1 CUK015 05v00r00CUKM005 nAn 03 Introductionv03r00 Irrigati oton NIrrigation.qxp_CUK015urse Cover 05v00r00 18/07/2019 16:09 Page 1 183x273 CMCYUKKM005p 02v03r00 Irrigation Patient Cover 183x273 CMYK CUK011 07v01r00 Living with a stoma.qxp_CUK011 07v01r00 18/07/2019 14:41 Page 1 CUK010 02v01r00 Helpline Cards.qxp_CUK010 02v01r00 17/06/2019 12:04 Page 1 C o l C Supporting and empowering you SupportingFeaturi nandg empowering you Featuring o s After you have provided Supporting and empowering you o l • Introduction from Professor Bill Heald CBE – “Since my appointment as President of the Colostomy • Introduction from Professor Bill Heald CBE – “Since my appointment as President of the Colostomy for your loved ones, we t

Association in 2005, I have been amazed at how many colostomates are unaware of Colostomy Irrigation.” o s Supporting and empowering you Supporting and empowering you Association in 2005, I have been amazed at how many colostomates are unaware of Colostomy Irrigation.” o m hope you will consider a • Comment from Sue Hatton, Colostomy UK volunteer – “I firmly believe that patients facing an irreversible • Comment from Sue Hatton, Colostomy UK volunteer – “I firmly believe that patients facing an irreversible t Big or small, we will use colostomy are given the opportunity to discuss colostomy irrigation with their colorectal surgeon and stoma colostomy are given the opportunity to discuss colostomy irrigation with their colorectal surgeon and stoma o m gift to Colostomy UK. care nurse prior to their operation, whenever possible. I also believe that patients offered the opportunity to care nurse prior to their operation, whenever possible. I also believe that patients offered the opportunity to y your gift in a responsible, How will a colostomy Colearn arlostomye given support, encouragement airrigation:nd time to adapt to the techniques involved with this method of learn are given support, encouragement and time to adapt to the techniques involved with this method of I r i g a t o n d Living with a stoma bowel management.” bowel management.”

y sustainable and

call the stoma helpline for: • Who can be offered Colostomy Irrigation I r i g a t o n • Who can be offered Colostomy Irrigation aect me? A group of stoma care nurses discuss colostomy irrigation. impactful way. YOUR An introduction A Cgroup of stolmoa cares nutrseso discumss colosytomy irIrigratiorn. igation Colostomy Irrigation Information for ostomates emotional support, experience based • Reviewing the equipment Colostomy Irrigation • Reviewing the equipment Colostomy Irrigation Two stoma care nurses review the equipment required for colostomy irrigation. Two stoma care nurses review the equipment required for colostomy irrigation. If you have any questions a Information for patients before stoma surgery and You and their carers • A stoma care nurse introduces – Colostomy Irrigation to a patient • A stoma care nurse introduces – Colostomy Irrigation to a patient member of our team will be C o l s t m y ?

advice and guidance from a volunteer. C o l s t m y ? A stoma care nurse discusses colostomy irrigation with her patient. a reference tool for WILL, www.ColostomyUK.org www.ColostomyUK.org A stoma care nurse discusses colostomy irrigation with her patient. more than happy to help. www.ColostomyUK.org • Experienced Irrigator • Experienced Irrigator A film sequence of an experienced patient irrigating at home from start to finish followed by a personal A sfilmt soequmencea of acn eaxperrienc end pautiernts irreigastin gs atp homee cfroima stalrit sto tfinsish followed by a personal testimonial. testimonial. An educational DVD 0800 328 4257 a r Colostomy Irrigation – an alternative method of bowel management YOUR 0800 328 4257 • SCN to SCN discussion Stoma care nurses discuss the film. An inexperienced nurse voices questions about • SCN to SCN discussion Stoma care nurses discuss the film. An inexperienced nurse voices questions about Y colostomy irrigation – these are answered by the other SCNs. The Colostomy UK buddy system is also e f colostomy irrigation – these are answered by the other SCNs. The Colostomy UK buddy system is also www.ColostomyUK.org o u 24 hours a day and completely free. explained. e r explained. www.ColostomyUK.org

• What patients say e n c • What patients say A group of four patients (male/female) discuss the benefits of colostomy irrigation and explain how this A group of four patients (male/female) discuss the benefits of colostomy irrigation and explain how this A n e d u c a t i o l D LEGACY [email protected] Registered Charity Number: 1113471 procedure has changed their lives. CUK010 02v01r00 Helpline Cards.qxp_CUK010 02v01r00 17/06/2019 12:04 Page 2 e t procedure has changed their lives.

Acknowledgements: Kind thanks go to Coloplast and Dansac for making the production of this DVD a reality for Colostomy UK. o l f Acknowledgements: Kind thanks go to Coloplast and Dansac for making the production of this DVD a reality for Colostomy UK. Kind thanks go to all those who gave their time freely and appeared in both DVDs – Professor Bill Heald CBE. Colostomy UK Kind thanks go to all those who gave their time freely and appeared in both DVDs – Professor Bill Heald CBE. Colostomy UK Volunteers and colostomy irrigators: Sue Hatton, Judy Colston, Douglas Haywood, Helen McTurk, Martin Robbins and Sarah Volunteers and colostomy irrigators: Sue Hatton, Judy Colston, Douglas Haywood, Helen McTurk, Martin Robbins and Sarah Squire. Stoma Care Nurses: Juliette Fulham RGN, BSc (Hons) CNS (Stoma Care) Heatherwood & Wexham Park Hospitals NHS o r Squire. Stoma Care Nurses: Juliette Fulham RGN, BSc (Hons) CNS (Stoma Care) Heatherwood & Wexham Park Hospitals NHS Foundation Trust, Amanda Gunning – CNS (Stoma Care) The Royal Marsden Hospital, London, Emma Maltby RGN, CNS (Stoma Foundation Trust, Amanda Gunning – CNS (Stoma Care) The Royal Marsden Hospital, London, Emma Maltby RGN, CNS (Stoma a n d Y c l i n a u r s e p a n d Y Telephone: 0118 939 1537 Care) Basingstoke and North Hampshire Hospital Hampshire Hospitals NHS Foundation Trust, Hyacinth Thompson RGN, CNS Care) Basingstoke and North Hampshire Hospital Hampshire Hospitals NHS Foundation Trust, Hyacinth Thompson RGN, CNS (Stoma Care) Queen’s Hospital, Romford, Wendy Osborne MSc, RGN, ENB 216 (Stoma care) Charter Healthcare Nurse Manager (Stoma Care) Queen’s Hospital, Romford, Wendy Osborne MSc, RGN, ENB 216 (Stoma care) Charter Healthcare Nurse Manager [email protected] Coloplast Ltd, Lucy Russell RGN, CNS (Stoma Care) Colorectal/Stoma Care Specialist Nursing Team Norfolk and Norwich Coloplast Ltd, Lucy Russell RGN, CNS (Stoma Care) Colorectal/Stoma Care Specialist Nursing Team Norfolk and Norwich V D – University Hospital, Norwich. Special thanks go to Monty Taylor – Chairman of Trustees and members of the Board of Trustees at University Hospital, Norwich. Special thanks go to Monty Taylor – Chairman of Trustees and members of the Board of Trustees at Colostomy UK for supporting this project, Sarah Crane CEO – The Pelican Cancer Foundation, for providing the film venue, Anna Colostomy UK for supporting this project, Sarah Crane CEO – The Pelican Cancer Foundation, for providing the film venue, Anna Thame – Head of External Affairs and Communications Hampshire Hospitals NHS Foundation Trust Basingstoke and North Thame – Head of External Affairs and Communications Hampshire Hospitals NHS Foundation Trust Basingstoke and North a n l t Hampshire Hospital for permissions. Duncan Wells and Sarah Squire for the voice over recording and scripting. Jane Wood for

o u Hampshire Hospital for permissions. Duncan Wells and Sarah Squire for the voice over recording and scripting. Jane Wood for o u project management, concepts, film direction/editing/continuity and Resolution Television for their patience and project management, concepts, film direction/editing/continuity and Resolution Television for their patience and

professionalism. professionalism. Freephone helpline: e r n a t i v Freephone helpline: n o . 1 3 4 7 call the adminline for: n o . 1 3 4 7 e m t h o d f e d c h a r i t y e d c h a r i t y e r e r

t How to contact us information packs, ID cards, radar keys, t How 0t8o0 c0o 3n28ta 4c2t5 u7s 0800 328 4257 e g i s e g i s

2 0 1 8 | R Write to: Enterprise House, 95 London Street, Reading, Berkshire, RG1 4QA 2 0 1 8 | R Write to: Enterprise House, 95 London Street, Reading, Berkshire, RG1 4QA

travel certificates and literature. t s ( e d . e d . o b e r o b e r Stoma helpline: e s r v Stoma helpline: Stoma helpline: e s r v General enquiries: 0118 939 1537 General enquiries: 0118 939 1537 b o t o m a c r u b l i c a t o n : O w 24–hour free helpline: 0800 328 4257 u b l i c a t o n : O 24–hour free helpline: 0800 328 4257 P P U K . A l r i g h t s U K . A l r i g h t s y e l m a n g t y

e o f USING YOUR WILL TO HELP

e o f 0800 328 4257 a t o m a t o m t 0118 939 1537 t endorsed by | D o s | D 0800 328 4257 0800 328 4257 o s e r o l E–mail: [email protected] e r o l v E–mail: [email protected] OSTOMATES OF TODAY AND v o o www.ColostomyUK.org if we’re not in, just leave a message. Website: www.ColostomyUK.org Website: wAwn wed.uCcoatlionsatlo DmVDy iUn aKs.socrigation with An educational DVD in association with TOMORROW e ) y r i g h t © 2 0 1 4 ‒ 8 C

[email protected] Registered Charity Number: 1113471 y r i g h t © 2 0 1 4 ‒ 8 C U K M 0 5 n 3 v r C o p U K M 0 5 p 2 v 3 r C o p C C C Supporting and empowering you C Helpline Cards How will a Irrigation Irrigation DVD Irrigation DVD Legacy Flyer Living with Colostomy Booklet (nurses) (patients) a stoma affect me?

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Supporting and empowering you Supporting and empowering you Supporting and empowering you Four ways to join us Supporting and empowering you 1 ll in the form below Sam has a 2 call 0118 939 1537 Colostomy UK’s agship magazine 3 email [email protected] Pain and discomfort Parastomal Hernias Rectal discharge Stoma Tidings, is hailed by ostomates and one to one Stoma 4 visit [email protected] following stoma surgery healthcare professionals alike for the support and reassurance for YOU To join Colostomy UK – please ll in your details below in BLOCK support and information that it provides following stoma surgery capitals and delete where appropriate. Then post this form back to: your family and for carers Colostomy UK, Enterprise House, 95 London Street, Reading, readers with on a quarterly basis. Berkshire, RG1 4QA. www.ColostomyUK.orgwww.ColostomyUK.org Visit our website or call us to sign up Title: (Mr/Mrs/Miss/Ms) for your free copy. www.ColostomyUK.org www.ColostomyUK.org www.ColostomyUK.org First Name:

Surname:

Address: (please include house name/number and street name)

Postcode: How to contact us Telephone: Write to: Enterprise House, 95 London Street, Email: Reading, Berkshire, RG1 4QA

Date of Birth: Adminline: 0118 939 1537 Signed: Date: Stoma helpline: 0800 328 4257 How did you nd out about Colostomy UK? E–mail: [email protected] GP: Hospital: Open Day: Other: Website: www.ColostomyUK.org If ‘other’ please specify: What type of stoma do you have?

Colostomy Ileostomy Urostomy Reason for surgery: Date of operation: Stoma helpline: Would you like to learn about colostomy irrigation? Stoma helpline: Stoma helpline: 0800 328 4257 Stoma helpline: Yes: No: Data Protection Act: Colostomy UK is registered under the Data Protection Act 2018, registration no. Z9295190. The data we hold is managed in strict accordance with the act. We do not disclose any information supplied by you to third party organisations. CUK007 10v01r00 0800 328 4257 0800 328 4257 Date of Publication: July 2019 0800 328 4257 • If you would like us to send you their promotional material should we think it may Copyright ©2012‒2019 Colostomy UK be benecial to you please tick this box • If you would like to receive information about special oers or promotions from Registered charity no. 1113471 Colostomy UK please tick this box www.ColostomyUK.org Supporting and empowering you Supporting and empowering you Produced by the Colostomy Association One to One Ovarian Pain & Parastomal Rectal Sam has a stoma Stoma friendly (join us) Flyer Cancer and Discomfort Hernias Discharge (colouring book) toilet guideline

stomas TC001 07v00r00 Tri-Charity Leaflet - Did you know.qxp_TC001 07v00r00 30/04/2018 11:05 Page 1 and stickers

CUK013 06v00r00 Stoma Reversal.qxp_CUK013 06v00r00 18/07/2019 15:25 Page 1 CUK014 10v00r00 Travel Advice.qxp_CUK014 10v00r00 13/06/2019 08:55 Page 1 CUK001 Stoma06v00r00 CUK Folder.qxp_CUK001 06v00r00 20/02/2019 10:02 Page 1 Autumn 2019 | Issue 55

Supporting and empowering you

Supporting and empowering you Supporting and empowering you support

y t Home delivery without the worry. • DedicatedDedicated personal personal advisor advisor Premium Ostomy Support Wear

Our values • MonthlyMonthly stock stock and well-being and well-being “check-ins “check-ins”” • LargeLarge selection selection of complimentary of complimentary items items w includingincluding mattress mattress protectors protectors CUK001 06v00r00 CUK Folder.qxp_CUK001 06v00r00 20/02/2019 10:02 Page 1 Support: We provide compassionate • We deliverWe deliver all your all stomayour stoma products products and your and your ZZZFRPĆ]]FRP

M supportc tailoredharities to the needs of the medicationmedication prescriptions prescriptions in one in delivery one delivery LQIR#FRPĆ]]FRP individual. Our support is open to all, Freephone: 0800 031 5401 0113 2662096 Stoma Reversal o Travel Advice irrespective of age, gender, ethnicity or visit www.bullens.com

Travel Certificate or religious belief. Where we cannot

help, we will signpost people to those

that can. UK: 0800 378 846

s Important information for travel authorities and their staff. Having a stoma should not prevent Empowerment:in Thethe aim of our day– Scotland: 0800 783 7148 A UK charity that supports and

t to–day work, projects and campaigns, Dispensing and Home Delivery Service

The bearer of this letter has a stoma. is to empower people with stomas to FREEPHONE 0800 626388 o you from travelling at home or abroad reach their potential. (UK only; Monday to Saturday, 9am – 5pm) empowers people with a stoma

www.fittleworth.com Email us: [email protected]

Visit: www.saltsmedilink.co.uk Advocacy: We act as a voice for people Follow us: @SaltsMedilink SaltsMedilink www.ColostomyUK.org m www.ColostomyUK.org What is a stoma? YOUR TAILORED, withUK stomas, raising awareness of the ® Registered trade mark of Salts Healthcare Ltd. Medilink® is part of the Salts Healthcare Ltd. Group. www.ColostomyUK.org issues that they face and engaging DISCREET DELIVERY SERVICE

with organisations to bring about

A stoma is a surgically created opening in the abdomen through which the bowel and/or positive outcomes. a bladder is diverted so that bodily waste can be collected in a bag. A stoma is a ‘hidden’ % $&#5 ( 73 (2$5

Impartiality: The advice we provide is 1(" )!$(()53$5 )23)'8

condition. unbiased. 01)432 s Integrity: Being honest, trustworthy Website: For free samples or more information: www.securicaremedical.co.uk If you need to search the bearer, then please: and doing the right thing in all that we FREEPHONE 0800 028 2144 do. · Be sensitive and empathetic. (England & Wales) or Email: FREEPHONE 0800 626388 (Scotland) [email protected] · Offer to conduct the search in a private room. Our vision 6660 %' $&)4% [email protected] 7&42$5 $231$43)1)1 23)'81)432 Freephone: 0800 585 125 www.salts.co.uk & · Do not separate the holder from their medical supplies as they may need them. We want hidden conditions to be understood and accepted by all. Our · Allow the holder a chaperone. Colostomy UK would like to give special thanks to all the featured manufacturers and vision is of communities in which suppliers for their kind support in the production of this folder. · Wear gloves. everyone is empowered to reach their potential.

NAME:

Enterprise House, 95 London Street, PASSPORT NUMBER: Reading, Berkshire RG1 4QA

T: 0118 939 1537 ADDRESS: W: www.ColostomyUK.org E: [email protected] 24–hour freephone helpline: 0800 328 4257 DOCTOR’S NAME AND ADDRESS: SURGERY STAMP: three organisations How to contact us Stoma helpline: Write to: Enterprise House, 95 Londonone Street, Reading,aim Berkshire: yo RG1u 4QA Stoma helpline: T: 0118 939 1537 My two stomas E: [email protected] Freephone helpline: W: www.ColostomyUK.orgwww.stomasupport.org 0800 328 4257 24–hour freephone helpline: 0800 328 4257 Ping & Pong… 0800 328 4257 0800 328 4257 page 24

Colostomy Association Ltd trading as Colostomy UK, registered office is at Enterprise House, 95 Stoma Helpline: 0800 328 4257 London Street, Reading, RG1 4QA Registered charity number: 1113471. Company number 05623273. Adminline: 0118 939 1537

This certificate is in no way a medical endorsement that guarantees the holder has a stoma. It is

intended to be used as an aid for airport staff. [email protected] www.ColostomyUK.org empowering you empowering

Stoma Tidings Travel Advice Travel Tri–Charityand Supporting Welcome Pack Home delivery without the worry. Reversal Magazine Certificate Leaflet • DedicatedDedicated personal personal advisor advisor Premium Ostomy Support Wear Our values • MonthlyMonthly stock stock and well-being and well-being “check-ins “check-ins”” 32 | TIDINGS 55 | AUTUMN 2019 WEBSITE: WWW.COLOSTOMYUK.ORG • LargeLarge selection selection of complimentary of complimentary items items Support: We provide compassionate includingincluding mattress mattress protectors protectors • We deliverWe deliver all your all stomayour stoma products products and your and your ZZZFRPĆ]]FRP support tailored to the needs of the medicationmedication prescriptions prescriptions in one in delivery one delivery LQIR#FRPĆ]]FRP individual. Our support is open to all, Freephone: 0800 031 5401 0113 2662096 irrespective of age, gender, ethnicity or visit www.bullens.com or religious belief. Where we cannot help, we will signpost people to those that can. UK: 0800 378 846 Empowerment: The aim of our day– Scotland: 0800 783 7148 A UK charity that supports and to–day work, projects and campaigns, Dispensing and Home Delivery Service is to empower people with stomas to FREEPHONE 0800 626388 reach their potential. (UK only; Monday to Saturday, 9am – 5pm) empowers people with a stoma www.fittleworth.com Email us: [email protected] Advocacy: We act as a voice for people Visit: www.saltsmedilink.co.uk YOUR TAILORED, Follow us: @SaltsMedilink SaltsMedilink with stomas, raising awareness of the ® Registered trade mark of Salts Healthcare Ltd. Medilink® is part of the Salts Healthcare Ltd. Group. www.ColostomyUK.org issues that they face and engaging DISCREET DELIVERY SERVICE with organisations to bring about positive outcomes. % $&#5 ( 73 (2$5 Impartiality: The advice we provide is 1(" )!$(()53$5 )23)'8 unbiased. 01)432 Integrity: Being honest, trustworthy Website: For free samples or more information: www.securicaremedical.co.uk and doing the right thing in all that we FREEPHONE 0800 028 2144 do. (England & Wales) or Email: FREEPHONE 0800 626388 (Scotland) [email protected] Our vision 6660 %' $&)4% [email protected] 7&42$5 $231$43)1)1 23)'81)432 www.salts.co.uk Freephone: 0800 585 125 We want hidden conditions to be understood and accepted by all. Our Colostomy UK would like to give special thanks to all the featured manufacturers and vision is of communities in which suppliers for their kind support in the production of this folder. everyone is empowered to reach their potential.

Enterprise House, 95 London Street, Reading, Berkshire RG1 4QA

T: 0118 939 1537 W: www.ColostomyUK.org E: [email protected] 24–hour freephone helpline: 0800 328 4257

How to contact us Write to: Enterprise House, 95 London Street, Reading, Berkshire RG1 4QA T: 0118 939 1537 E: [email protected] Freephone helpline: W: www.ColostomyUK.org 24–hour freephone helpline: 0800 328 4257 0800 328 4257

Registered Charity No: 1113471

www.ColostomyUK.org

empowering you empowering Supporting and Supporting SUPPORT

Your letters and e–mails

CONTINUED FROM PAGE 31 COLUMN 3 Dear Tidings For too long now we have had to explain ourselves. In certain public toilets, they are Jane R’s comments such as: “…sometimes On a recent visit to The Theatre Royal in very basic and have no hooks, disposal taken away without any thought or concern Nottingham I was delighted to find that the bins or a shelf for us to use. So, a disabled for anyone’s feelings.” are to be expected disabled toilet was the best I have come toilet that displays this sign is a must and from patients who are kept in the dark and across since receiving my colostomy. the addition of a shelf and hook make all not informed of such radical changes to the I am always aware that I might need a the difference. It gives me confidence and accepted norm. change of pouch while out and about reassurance when using them. Lastly, I must express some concern upon and so I have purchased a RADAR Key to I am going to look out for the signs reading that Jane R had an appointment have access to a disabled toilet and peace and where I don’t see them, in hotels, with her GP only to discover “he had no of mind. That peace of mind has been supermarkets large department stores I am shattered time and again when I have knowledge of what exactly a stoma was going to make myself a promise to write emerged from using the toilet to face abuse or how it worked”. I do wonder if the to the manager and point out how their from people waiting who assume that, statement from my own (then) GP telling facilities can be improved. I understand because I don’t have an obvious physical that it was a theatre goer that got the me: “you are your own expert as you know disability, I shouldn’t be using the facility. changes made to the toilets in Nottingham. more about your complex needs as an So on behalf of us all I would like to say ostomate then I ever will” has ever been On the door of the facilities in the Theatre thank you to that person. Royal there is a wonderful sign stating that heard by any other patients around the Sheila B country. not all disabilities are visible. How I wanted to shout Hurrah! Inside was even better – a Please note: It would seem to be that in order to be large shelf for my stoma products, and that understood as an ostomate you have to desperately needed hook behind the door! Before acting on suggestions from speak to another fellow ostomate or a other ostomates regarding medication trained stoma care professional, or at a I travel a great deal and I will look for such or treatment you must check with your push perhaps read of a fellow reader or improvements to the disabled toilets from now on. The sign on the door is an enormous contributor to the Tidings magazine. doctor or stoma care nurse that this step forward in raising awareness of people course of action is suitable for you. Robert H with hidden disabilities and conditions.

We look forward to hearing from you, our readers: Send an e–mail to: [email protected] Write a letter to: The Editor, Colostomy UK, Enterprise House, 95 London Street, Reading, RG1 4QA Please make sure you include your full name and contact details, and confirm thatColostomy UK has permission to publish your letter. Also indicate whether you would like us to use your full name or just your first name. If you do not give us permission to use your name we will publish only your initials.

FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 55 | AUTUMN 2019 | 33 Sash Medical HB102 00v00r01 PHalf page.qxp_Sash Medical 01v01r00 PHalf page 09/07/2018 15:38 Page 1

SUPPORT SASH Est. 1972 Hernia Support Belt Gives firm support to the muscles around the stoma, ideal for sports, gardening, DIY etc. Hands free from clutching the stoma when coughing or sneezing.

When people ask me what I do now that I’m retired and have stopped my involvement in local amateur dramatics they aren’t always prepared for the answer. Telling them that I’m a hospital volunteer who visits stoma patients leads to some interesting conversations. Frequently people look a bit puzzled; many don’t Ref: even know what a stoma is! For those who are unsure, I explain HB102 that I have had a stoma myself for 14 years and I go in to hospital to help patients adjust after their surgery. F All belts are handmade and adjustable to suit your pouch and waist size. The role of hospital visitor is one I find interesting as well as F Available on prescription or can be purchased rewarding. My local hospital, the Royal Stoke University Hospital, direct from SASH Medical. has been encouraging volunteer patient involvement for over 20 years. Ernie Hulme, until recently a trustee of Colostomy UK, F Belts are processed and mailed to your home visited me on the ward when I had my APeR surgery and gave within two working days. me such encouragement that very soon afterwards I decided I F For more information, contact SASH Medical too would like to be a visitor. A ‘get–used to life with a stoma’ directly by phone or email. period of a couple years was necessary first, before undergoing training with Colostomy UK (then the Colostomy Association) and Leakage & Security Belt Stoma Shield Belt shadowing another volunteer on a visit. Ref: Ref: SR103 SS104 The bowel care team and consultants feel that volunteer visitors play a valuable part in the recovery of patients, amongst other things helping them to re–adjust to a new life after surgery. Those who are familiar with the history of Colostomy UK will know that our charity started in this way. Back in 1963, a surgical registrar at one of the London hospitals asked Gertrude Swithenbank (herself a colostomate) to visit his patients on the wards. [Ed’s note: you can read the full story in Tidings Summer 2017.] It is comforting to know that more than 50 years on and the value of one ostomate talking to another remains just as important as ever. As a hospital “The ring of confidence” “The ultimate protection” visitor, I am following well–trodden ground! Lightweight and unobtrusive, Available in high or low dome The patients I see vary greatly. For those who are admitted as an eliminates leakage and pouch profile, offers protection from detachment problems. accidental knocks and chaffing. emergency and wake up with a bag on their tummy, it comes as a huge shock (some initially think it is a dressing of some sort). Some are very frightened and in denial, not wanting to look at their stoma at all. For others the surgery is planned, but still an unwelcome Freephone: 0800 389 3111 solution to their illness. Even when the stoma is expected to be

34 | TIDINGSsashstomabelts.com 55 | AUTUMN 2019 WEBSITE: WWW.COLOSTOMYUK.ORG SUPPORT SUPPORT

My role as a hospital visitor Moira Hammond

only temporary, there are still many questions to be answered. contact their stoma care nurse or doctor. I reassure them about Then there are others who, because their life has been restricted diet, giving them the relevant booklet if they want it. Sometimes due to illnesses like Crohn’s or colitis, have been expecting, if not people ask about holidays, so I make sure I have the Travel begging, to have a stoma for years! Whatever the circumstances, advice booklet to hand. People find it reassuring to know that I in that immediate post–op period, people find it very reassuring to have made plenty of long–haul flights without any problems (no meet an ostomate – looking normal and enjoying their life. exploding bags!). I keep a reserve of other literature too, such as: Active ostomates; Colostomy irrigation: an introduction; Stoma My weekly routine starts with a visit to the stoma nurses’ office, reversal. I also tell them to take care not to strain themselves by where they tell me which patients would like a volunteer to visit doing anything too strenuous in the early days. Having heard so them and also what type of stoma the patient has. They do not many ostomates say they wish they had been told this, I think give me much more personal information as this is confidential. I keep a stock of information at the hospital (including Colostomy it is sensible to broach the subject and warn about the issue of UK literature), so I collect some introductory packs before going hernias, particularly when a patient seems overly keen to get back onto the wards. Most of the nurses on the wards know me well gardening or the golf course! now, but I always make sure that somebody knows I am about to I also take the opportunity to tell patients about ‘Outlook’ our call on patients and I check that they are well enough for a visit. Staffordshire support group and the affiliated County Stoma Sometimes I am advised against it at the moment; perhaps the Group if they live in the south of the county. Although support patient has had a bad night, or is sickly. groups aren’t for everyone, I feel it is important that patients I see Once I have found the patient I introduce myself and show them leave hospital knowing how to connect with the local ostomate my hospital ID card, my Colostomy UK badge, and explain that I community. Our group has regular meetings attended by a stoma am a volunteer visitor who has a colostomy. There is often a look care nurse. We also hold an open day and have coffee mornings of surprise and disbelief (probably because I look so ‘normal’) and at a local pub. Our attendees, just like the patients I see on the then, if they wish, we have a chat. I first confirm they are feeling wards, have different types of stomas. With this in mind, I make well enough and on occasions arrange to come back another time, sure that I have literature from the Ileostomy Association and also especially if they want me to meet their relatives/friends as well. It the Urostomy Association on my hospital visits. can be really useful to meet relatives because, as I’m sure readers I’m not the only volunteer visitor. I work with three or four others, will know from personal experience, there is a great deal to take which is great because it means that between us we can make on board in those early days after surgery. People’s memories in sure that most patients get to see someone. I am very passionate hospital can be muddled, perhaps due to medication and shock, about my work for Colostomy UK. I am not sure how different so another pair of ‘ears’ can really help. Relatives and friends often my life would have been without my stoma but this, at–the–time have questions too. unwanted ‘gift’, has given me a direction and focus which I am I give those I visit a pack of information from Colostomy UK. This happy to make use of and, in doing so, hopefully help others. The includes a copy of Tidings, the booklet Living with a stoma and work I do would not, however, be possible without the support I also the form to apply for a key to accessible toilets and an ID receive from all manner of sources: the nurses and consultants at card. I make sure they know about the 24–hour stoma helpline, the Royal Stoke University Hospital; Colostomy UK; the IA; the UA; but emphasise that if it’s medical advice that is needed, they must and last, but not least, Ernie Hulme my mentor and inspiration. ■

FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 55 | AUTUMN 2019 | 35 Fullx3 02v00r00 CUK Merchendise - All.qxp_Fullx3 02v00r00 CUK Merchendise - All 01/03/2019 13:54 Page 1

Team Colostomy UK £8.99 Beanie hat Shipping £1.99 100% soft touch acrylic. Features embroidered Team Colostomy UK logo on front. One size fits all. Colostomy UK kit and merchandise Qty required: ______All profits raised from the following items help us to Team Colostomy UK £24.99 support and empower ostomates. Complete the order from below or order online at ww.colostomyuk.bigcartel.com Training singlet Shipping £3.00 100% sublimated polyester features Team Colostomy UK logo on front and #ActiveOstomates on back Team Colostomy UK £29.99 Sizes available (inches): Small (34"/36"), Medium (38"/40"), Large (42"/44"), XLarge (46"/48") Training T-shirt Shipping £3.00 Qty required: Small ______Medium ______100% sublimated polyester features Team Colostomy UK logo on front and #ActiveOstomates on back Large ______XLarge ______Sizes available (inches): Small (34"/36"), Medium (38"/40"), Large (42"/44"), XLarge (46"/48"), XXLarge (50"/52")

Colostomy UK £11.50 Qty required: Small ______Medium ______Logo T–Shirt Shipping £2.99 Large ______XLarge ______XLarge ______

100% heavy duty cotton. Colostomy UK logo on front, Colostomy UK.org on back Anatomy aprons £156.00 Sizes available (inches): Shipping £4.95 Small (34"/36"), Medium (38"/40"), A fantastic teaching tool for educating people about the Large (42"/44"), XLarge (46"/48"), XXLarge (50"/52") various kinds of stomas. Aprons can help explain a variety of different surgical procedures including Qty required: Small ______Medium ______colostomy, loop colostomy, transverse colostomy,

Large ______XLarge ______ileostomy, colectomy and hemicolectomy.

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Team Colostomy UK Otto ostomy Standard £1,020.00 RL hooded sweatshirt anatomy model Advanced £1,260.00 Shipping £4.95 £31.99 An excellent teaching resource. Using a simple Shipping £2.99 colour–coding system for the various organs, Otto can 45% acrylic, 30% cotton, help patients better understand the workings of their 15% polyester, 10% mixed fibres. digestive system and urinary tract. An end or loop Team Colostomy UK colostomy and ileostomy can be demonstrated, along RL hooded sweatshirt. with a urostomy and gastrostomy tube replacement. Features printed logo on front Standard Model Advanced Model as standard model plus: and #ActiveOstomates on back Stomas: Stomas: Sizes available (inches): 7/8" Diameter stoma 3" Diameter stoma Small (34"/36") 2" Diameter stoma Loop without rod Loop with rod Double barrel stoma Medium (36"/38") Urostomy with 3" stents Oval stoma Large (42"/44") Granuloma stoma XLarge (46"/48") Necrotic stoma Mushroom stoma XX Large (50"/52") Prolapsed stoma Qty required: Ischemic stoma Flush stoma In–skin fold stoma Small ______Parastomal hernia stoma y no. 1113471 Mucocutaneous separation stoma Medium ______Recessed stoma Large ______Additional parts included in both models: small intestine segment, ileostomy loop adaptor, XX Large ______colostomy loop adaptor, ileal conduit.

XX Large ______Qty required: ______Qty required: ______

All products sold individually and prices are per item and inclusive of VAT & p+p to UK & NI only. Please allow 28 days for delivery.

Please send me the above marked items. I enclose a cheque for £ made payable to: Colostomy UK. Title: Name: Address:

Postcode: Tel: Email: Fullx3 02v00r00 CUK Merchendise - All | Date of Publication: April 2019 Copyright ©2018–2019 Colostomy UK Registered charit 36 | TIDINGS 55 | AUTUMN 2019 WEBSITE: WWW.COLOSTOMYUK.ORG Fullx3 02v00r00 CUK Merchendise - All.qxp_Fullx3 02v00r00 CUK Merchendise - All 01/03/2019 13:54 Page 1

NEW PRODUCTS Team Colostomy UK £8.99 New products Beanie hat Shipping £1.99 100% soft touch acrylic. Features embroidered Team Colostomy UK logo on front. and services One size fits all. Colostomy UK kit and merchandise Tidings is always interested to learn about new stoma care products and services from manufacturers and suppliers. If you Qty required: ______All profits raised from the following items help us to have found a stoma care product or service beneficial to ‘living with a colostomy’ please letTidings know. YOUR findings could Team Colostomy UK £24.99 support and empower ostomates. Complete the order make ALL the difference to others. from below or order online at ww.colostomyuk.bigcartel.com Training singlet Shipping £3.00 NEW NEW service from 100% sublimated polyester features Team Colostomy UK NEW logo on front and #ActiveOstomates on back Team Colostomy UK £29.99 Sizes available (inches): Small (34"/36"), Medium (38"/40"), Large (42"/44"), XLarge (46"/48") Training T-shirt Shipping £3.00 Qty required: Small ______Medium ______100% sublimated polyester features Team Colostomy UK When English isn’t your preferred language, it can logo on front and #ActiveOstomates on back Large ______XLarge ______Sizes available (inches): Small (34"/36"), Medium (38"/40"), sometimes be difficult to get the support you require Large (42"/44"), XLarge (46"/48"), XXLarge (50"/52") for your stoma and/or continence care needs. That’s why ® Colostomy UK £11.50 Qty required: Small ______Medium ______Medilink has launched an innovative 3–way telephone Logo T–Shirt Shipping £2.99 Large ______XLarge ______XLarge ______translation service to help communicate and overcome this Salts Healthcare has language barrier: the NEW Medilink® Language Support 100% heavy duty cotton. Colostomy UK logo on front, Service. Colostomy UK.org on back Anatomy aprons £156.00 some exciting news! Sizes available (inches): Shipping £4.95 Small (34"/36"), Medium (38"/40"), A fantastic teaching tool for educating people about the Large (42"/44"), XLarge (46"/48"), XXLarge (50"/52") various kinds of stomas. Aprons can help explain a variety of different surgical procedures including Qty required: Small ______Medium ______colostomy, loop colostomy, transverse colostomy,

Large ______XLarge ______ileostomy, colectomy and hemicolectomy.

XXLarge ______Qty required: ______

Team Colostomy UK Otto ostomy Standard £1,020.00 RL hooded sweatshirt anatomy model Advanced £1,260.00 We are proud to launch our NEW monthly free Ostomy Podcast, To find out more about the Medilink Language Support Service Shipping £4.95 Me, My Bag and I, available to download or subscribe to from £31.99 An excellent teaching resource. Using a simple and how to sign up, visit: Shipping £2.99 your usual podcast provider. To find out more and get a step colour–coding system for the various organs, Otto can 45% acrylic, 30% cotton, help patients better understand the workings of their by step guide on podcasts visit www.salts.co.uk/podcasts www.saltsmedilink.co.uk/home-delivery/language-support 15% polyester, 10% mixed fibres. digestive system and urinary tract. An end or loop See our main advert on page 18. See our main advert on page 18. Team Colostomy UK colostomy and ileostomy can be demonstrated, along RL hooded sweatshirt. with a urostomy and gastrostomy tube replacement. Features printed logo on front Standard Model Advanced Model as standard model plus: and #ActiveOstomates on back Stomas: Stomas: Sizes available (inches): 7/8" Diameter stoma 3" Diameter stoma Small (34"/36") 2" Diameter stoma Loop without rod Loop with rod Double barrel stoma Medium (36"/38") Urostomy with 3" stents Oval stoma Large (42"/44") Granuloma stoma XLarge (46"/48") Necrotic stoma Mushroom stoma XX Large (50"/52") Prolapsed stoma Qty required: Ischemic stoma Flush stoma In–skin fold stoma Small ______Parastomal hernia stoma y no. 1113471 Mucocutaneous separation stoma Medium ______Recessed stoma Large ______Additional parts included in both models: small intestine segment, ileostomy loop adaptor, XX Large ______colostomy loop adaptor, ileal conduit.

XX Large ______Qty required: ______Qty required: ______

All products sold individually and prices are per item and inclusive of VAT & p+p to UK & NI only. Please allow 28 days for delivery.

Please send me the above marked items. I enclose a cheque for £ made payable to: Colostomy UK. Title: Name: Address:

Postcode: Tel: Email: Fullx3 02v00r00 CUK Merchendise - All | Date of Publication: April 2019 Copyright ©2018–2019 Colostomy UK Registered charit FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 55 | AUTUMN 2019 | 37 SUPPORT

News from support groups across the UK

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. If, you are thinking of starting a support group in your local area, or are perhaps about to take over the running of an existing one, then please don’t hesitate to get in touch with us for advice, Tel: 0118 939 1537 or e–mail: [email protected]

Shropshire BOTs For more information about the support Outlook group please contact Ken Jones on 01872 (Bums on Tums) The North Staffs Ostomy Support 863 106 or e–mail: kenjones1808@gmail. 8th Birthday Tea Group Annual Patients’ day in com Newcastle–under–Lyme. An annual Patients’ Open Day and Exhibition for all patients with a stoma Mid Devon Ostomy resulting from bowel or bladder diversion surgery, will take place at Support Group Bradwell Lodge, Bradwell Lane, Porthill, Janice Ford, who runs the group writes: Newcastle under Lyme, Staffs, ST5 8PS on Saturday 26 October from 11:30pm “I started the group in 2012. We to 4:30pm. have three or four meetings a year, 40 of us enjoyed a delicious 8th birthday It is anticipated that a member of the attended by approximately 20–30 tea at The Orangery Restaurant again this security staff from Manchester airport year and were joined by the Mayor and will be giving a talk and will also be ostomates and their partners. We Mayoress of Oswestry and Linda Gow available to answer individual queries. are a light hearted friendly group. and Karen Parker, stoma care nurses Members of the Bowel Care Team from We have a cup of tea or coffee from Wrexham Maelor and Shrewsbury the Royal Stoke University Hospital and and homemade cakes. In the past & Telford Hospitals. leading manufacturers will be present. we have had talks from the Force We were delighted when the Mayor, All members and friends of ostomates Councillor John Price announced he has are welcome to attend and light Cancer Group, Blue Cross and an decided to make BOTs one of his chosen refreshments will be available. amputee mountaineer! We have local groups to benefit from the Mayoral For further details please contact Moira quizzes too. We are also supported Fund. He told us: “I only found out about Hammond on 07788 402 195 or 07788 by the Exeter stoma department stomas about a month ago and I find it the 107 937. most amazing thing. You say it is what it who give talks on various topics. is, and just get on with it. I think what you Stoma reps also come along to have is amazing bravery and I think you Cornwall Ostomy show their products. We run a have created a way of life for yourselves.” Support raffle with prizes that people bring He is very keen to help us to raise the and from the stoma companies, profile of stomas and we will be getting together in the near future to discuss ways which covers the cost of the hall of achieving this together. and refreshments. Our meeting I very much look forward to working with in November has a Christmas a Mayor who is showing such empathy theme.” toward ostomates. Ken Jones reports that the group’s Open For further details please contact Janice Irene Constable Day in June went very well. Judging by Shropshire BOTs (Bums on Tums) the photographs Ken sent, it looks to Ford 0792 397 5051 or 01884 799 369 Stoma Support Group have been a well–attended event! email: [email protected]

38 | TIDINGS 55 | AUTUMN 2019 WEBSITE: WWW.COLOSTOMYUK.ORG SUPPORT James Paget Ostomy Support Group (JPOSG) for Norfolk and Suffolk Ostomists

A few years after we were formed we Membership to JPOSG is free with funds became a registered charity so that we being raised by members giving donations could fund raise to help stoma patients towards the buffet and raffle and a book that needed assistance. One of the things we did in those early days was to stall, which contributes towards room hire assist a young married couple to have IVF etc. We meet four times a year plus we have treatment. Having a family was proving a fifth evening in November for our annual impossible due to the amount of surgery the lady had undergone. The treatment dinner. The group is well attended, with 50 was successful and they now have a son plus people coming to meetings. Talks are in his 20s! given by healthcare professional and reps Our present day project is to assist local from stoma companies. Our stoma care stoma care nurses Helen and Lisa help a nurses also come along, so professional stoma care nurse in Nepal set up a service. Members of JPOSG are assisting with the advice is always available. cost of sending unwanted/unused stoma We would love you to come and join us, products out to her. you can contact me Sandra Hutchings Our social evenings are held at Gorleston Golf Club. A light buffet and refreshments on 01502 585 955, e–mail: sandra. are available. [email protected]

Ed’s note: I was very pleased to receive the letter below from Barry McErlain (known as Mack). I think Mack must be one of few people to have run a stoma support group as a non–ostomate, only to become an ostomate himself years later!

Dear Editor ranging from, how many members do you fact is the number of very successful For many years I have assisted in the have in the group, what support, if any, groups that meet during the working day, running of the Dewsbury and District do you receive from the local stoma care afternoons or very early evenings being Stoma Support Group, although I did not departments, to how often and at what popular. have a stoma, my wife did. I was a sort time of day do you hold your meetings. To stoma department staff, I say this: A little of associated member of the group. All Thank you to all the groups that responded non-medical help from a person who has this changed in early 2018 when I was to my survey. Unfortunately, this was not as undergone surgery and understands what diagnosed with bowel cancer, and it was many as I had hoped, with just over 30% it is like to live with a stoma can be very thought best that I became a fully paid– responding. With such a small number it is up member of our group. The trouble was difficult to extrapolate strong meaningful beneficial. A ‘shoulder to cry on’, a caring that nobody told me my initiation, from results. However, a clear picture did emerge word without any time restraints can work associate member to full member, would of why some groups are more successful wonders. How many surgery appointments take five months and involve several visits than others. are taken up with patients seeking non– to the hospital. medical help? A well–supported and Groups that are well–supported by stoma informed support group could free up B McErlain care nurses, be it in promoting the group to new ostomates, or attending group more appointment spaces for the patients that really do need medical help. It is a Having assisted with the group for many meetings on a regular basis, are very years, Mack has also been reflecting on successful and attract an attendance of 40 win–win situation. to 50, some even reported a membership why some support groups thrive while Mack others seem to struggle. He conducted of over 100 in the early days. The groups Member of the Dewsbury and District his own survey earlier in the year, which that have little or no input from nursing staff Stoma Support Group I thought readers would find interesting. are the ones that have a low attendance, This is an abridged version of his in the 10 to 20 range, some with only five Dewsbury and District Stoma Support thoughts and findings: or six members, despite the fact that they Group show all the enthusiasm and drive of the larger groups. Meetings: Last Thursday of the month, (March to November), at Observations on As well as providing support to ostomates, 7:00pm the most successful groups have a variety Stoma Support of different speakers and a very full social Venue: Oak Room, Oakwell Centre, calendar: BBQs, quizzes, trips to suppliers. Dewsbury District Hospital Groups They are all about living to the full and not In March of this year I emailed a number letting the fact you have stoma be the end For further details e–mail: of stoma support groups with 10 questions of all social activities. Another interesting [email protected]

FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 55 | AUTUMN 2019 | 39 FUNDRAISING Colostomy UK: focus on fundraising

Giovanni Cinque Fundraising and Development Manager E: [email protected] Thank you! Why should you fundraise for Colostomy UK? Colostomy UK is a self–funding charity. We receive no statutory support and so rely on donations to fund our activities. This means that every penny that you fundraise for us is vital. Without your help, we couldn’t support and empower ostomates or be their voice on the bigger issues. Get involved! Are you interested in fundraising for us? A successful event doesn’t need to raise huge amounts of money. We’ve got plenty of fund–raising ideas to help get you started. If you would like one of our brand new fund–raising packs, which also includes lots of hints and tips about organising an event, then call us on: 0118 939 1537 or e–mail: [email protected]

The number of people fundraising for Colostomy UK is growing What will your every year and it’s brilliant to see. But it does make it increasingly difficult for us to thank everyone personally through these pages! legacy be? It goes without saying, that we are grateful to each and every one You will have noticed that this of you. Here are just a few of those who have been helping us to edition of Tidings contains a copy make a difference. of our brand new legacy leaflet. v The Chester stoma support group raised over £500 from a Legacy gifts both large and small group walk. Thanks also to Morrison’s who match funded have an extraordinary impact on the amount raised. the people we support. v Martin Singleton raised over £1,000 from having his hair cut! You may remember reading earlier in the year about the v Chorley Panthers raised over £1,000 from the raffle they legacy gift that was left to us by held after our rugby league game in June. Isabel and Derek Jonas. Their gift has allowed us to better v The South Coast Scramble club donated £340 from their support ostomates in the North motorcycle scramble event. East of England. Legacies can v The team at CEVA Logistics took part in a 45km coastal walk gifted to the charity to use as it from Herne Bay to Sandwich in Kent in September. The final sees fit, or to support a specific amount raised has still to be counted but they’re hoping to part of our work, such as our reach £1,000. 24–hour stoma helpline, Tidings magazine, our Care workshops, or our Active Ostomates project. v Jack Tibbles walked 32km collecting litter as part of the National Citizens Service scheme and raised nearly £100. The leaflet includes all the basic information you will need if you are thinking about leaving us a gift in your Will. If you have any v The Nikki Jay Academy of Dance chose Colostomy UK as questions please contact us at [email protected] or the recipients of funds raised at their annual show in July, call 0118 939 1537. For legal advice you should contact a solicitor. donating £250.

40 | TIDINGS 55 | AUTUMN 2019 WEBSITE: WWW.COLOSTOMYUK.ORG FUNDRAISING Colostomy UK: focus on fundraising

Good luck Christine! Easy Fundraising

Easy fundraising is a website that allows you to donate to Colostomy UK at no extra cost to you while you shop with hundreds of the UK’s top High–street brands. All you need to do is: v Register as a supporter on the Easy Fundraising website and v Make sure that Colostomy UK (Colostomy Association) is Back in July, Christine Bradley completed the Peak District added as your supported cause. 100 kilometre event for Colostomy UK. If that’s not enough, next April she’ll be talking part in a sixteen day trek to Everest v You can then accumulate donations while you shop with base camp!! Thank you. any of their partner retailers. For more information or to register just visit We want your stamps! www.easyfundraising.org.uk/causes/colostomyassociation/ Grants and Trusts

Thanks to the following charitable trusts for their support of Colostomy UK: The Colin & Anna Frizzell Charitable Trust, Joseph Strong Frazer Trust and The Tay Charitable Trust.

Text giving

- STAMPS TO BE CUT / TORN FROM RECENT MAIL

- BRITISH AND FOREIGN

STAMPS – NO NEED TO SEPARATE

- NO MORE THEN 1CM OF ENVELOPE LEFT AROUND EACH STAMP

- DO NOT TRIM STAMPS TOO CLOSE SO THAT PERFORATIONS ARE DAMAGED

Send your stamps to -

COLOSTOMYColostomy UK StampUK Appeal STAMP10 Chestnut APPEAL Avenue 10North Chestnut Walsham Avenue We’ve recently launched a new Text Giving service. It’s a quick and NorthNorfolk Walsham easy way to donate and help us to continue producing Tidings, our NorfolkNR28 9XH advice literature and all our projects and campaigns. NR28 9XH The amount you donate will be added to your mobile phone bill, You can now donate your used and unwanted stamps to or deducted from your pay as you go credit. You will receive a reply Colostomy UK. Please see the image for details. confirming your donation.

FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 55 | AUTUMN 2019 | 41 CUK Donation form 07.qxp_CUK Donation form 07 08/08/2018 10:55 Page 1 CUK Donation form 07.qxp_CUK Donation form 07 08/08/2018 10:55 Page 1

SUPPORT Make a donation Make a donation

My Details: Title: Forename: Surname: My Details: Title: Forename: Surname: Home address: Home address: Postcode: Postcode: Telephone (home): Mobile: Telephone (home): Mobile: Email: Email:

Date of Birth: Month and year of operation: Date of Birth: Month and year of operation: Reason for your stoma: Stoma type: Colostomy Ileostomy Urostomy Reason for your stoma: Stoma type: Colostomy Ileostomy Urostomy Tick as appropriate: I would like to be kept informed by: J Post J Email J Telephone. Please tick if you would like a receipt Tick as appropriate: I would like to be kept informed by: J Post J Email J Telephone. Please tick if you would like a receipt I would like to receive information about: J Tidings magazine J Bag and product manufacturers J Colostomy UK, the work it does, I would like to receive information about: J Tidings magazine J Bag and product manufacturers J Colostomy UK, the work it does, including training, conferences, volunteer opportunities and fundraising. including training, conferences, volunteer opportunities and fundraising. We will never sell or swap your information with other organisations. You can change how we communicate with you at any time. We will never sell or swap your information with other organisations. You can change how we communicate with you at any time. Call us on: 0118 939 1537 or email: [email protected] Call us on: 0118 939 1537 or email: [email protected] ou. ou. y I would like to make a donation of: Thank you for your gift y I would like to make a donation of: £ Thank you for your gift £20 £30 or whatever you are able to give £ Thanks to the gift aid scheme – we can reclaim money on your £20 £30 or whatever you are able to give – thank Thanks to the gift aid scheme – we can reclaim money on your

I enclose a cheque or postal order made payable to Colostomy UK – thank donation from the government. For every pound you give us, we I enclose a cheque or postal order made payable to Colostomy UK UK donation from the government. For every pound you give us, we

can claim an extra 25p. For example, a donation of £20 becomes UK

my Please debit my Visa/Mastercard/Maestro Card with the amount specified can claim an extra 25p. For example, a donation of £20 becomes

£25 with gift aid, at no extra cost to you. my Please debit my Visa/Mastercard/Maestro Card with the amount specified to £25 with gift aid, at no extra cost to you. to Card number (Maestro only) I want to Gift Aid my donation and any donations I make in the olos Card number (Maestro only) I want to Gift Aid my donation and any donations I make in the future or have made in the past four years. I am a UK taxpayer and olos o C future or have made in the past four years. I am a UK taxpayer and understand that if I pay less Income Tax and/or Capital Gains Tax o C (Maestro only) (Maestro only) understand that if I pay less Income Tax and/or Capital Gains Tax than the amount of Gift Aid claimed on all my donations in that (Maestro only) (Maestro only) Expiry date Security code Start date Issue No. than the amount of Gift Aid claimed on all my donations in that tax year it is my responsibility to pay any difference. Expiry date Security code Start date Issue No. D D M M Y Y tax year it is my responsibility to pay any difference. D D M M Y Y Signed Date Signature: Date: / / 2019 Signed Date Signature: Date: / / 2019 eturn this page t eturn this page t

I would like to make a regular donation–Instruction to your Bank/Building Society to pay by Banker’s Standing Order: I would like to make a regular donation–Instruction to your Bank/Building Society to pay by Banker’s Standing Order: ect, then r ect, then r orr

To the Manager: (Bank or Building Society) orr e c To the Manager: (Bank or Building Society) e c Bank Address: Postcode: Bank Address: Postcode: Name(s) of Account holder(s):

details ar Name(s) of Account holder(s): details ar

our Account number: Sort code: our y Account number: Sort code: I would like to make a regular donation* of £20 £30 or other amount (please state) £ y I would like to make a regular donation* of £20 £30 or other amount (please state) £ monthly quarterly annually starting on the 1st 15th 25th of month: year: monthly quarterly annually starting on the 1st 15th 25th of month: year: orm, check

thereafter until further notice. (Please cancel any previous standing order in favour of this beneficiary). orm, check thereafter until further notice. (Please cancel any previous standing order in favour of this beneficiary). *Please allow one month’s notice to ensure donation processes through banking system and state your donation amount in words: *Please allow one month’s notice to ensure donation processes through banking system and state your donation amount in words: Please pay: NatWest Bank, Market Place, Reading, Berkshire, RG1 2EP Please pay: NatWest Bank, Market Place, Reading, Berkshire, RG1 2EP Account name: C.A. Ltd Account No: 88781909 Sort code: 60-17-21 Account name: C.A. Ltd Account No: 88781909 Sort code: 60-17-21

e, please fill in the f Name: (IN CAPITALS)

e, please fill in the f Name: (IN CAPITALS) Signature: Date: / / 2019 T55 Signature: Date: / / 2019 o donat T o donat T

Please fill in this form to make a donation. Check your details are correct, then return the completed Please fill in this form to make a donation. Check your details are correct, then return the completed form by post to: Colostomy UK, Enterprise House, 95 London Street, Reading, Berkshire, RG1 4QA. form by post to: Colostomy UK, Enterprise House, 95 London Street, Reading, Berkshire, RG1 4QA.

Telephone: 0118 939 1537 if you have any queries. Registered Charity No: 1113471 Telephone: 0118 939 1537 if you have any queries. Registered Charity No: 1113471 42 | TIDINGS 55 | AUTUMN 2019 WEBSITE: WWW.COLOSTOMYUK.ORG CUK Donation form 07.qxp_CUK Donation form 07 08/08/2018 10:55 Page 1 CUK Donation form 07.qxp_CUK Donation form 07 08/08/2018 10:55 Page 1

SUPPORT Make a donation Make a donation National support Stoma care open days organisations

Without donations from people like you, Colostomy UK could not continue its vital work supporting and empowering Without donations from people like you, Colostomy UK could not continue its vital work sIAupporting The Ileostomy and empow and Internalering Pouch ostomates. Thank you for supporting us. Support Group ostomatAttendinges. Thank a stomayou for care supporting Open Day us. is an opportunity to find out about all the ostomy www.iasupport.org products and services available. It is also a chance to meet other people who have Telephone 0800 0184 724 My Details: Title: Forename: Surname: a stoma and visit the Colostomy UK, IA and Urostomy Association stands. My Details: Title: Forename: Surname: e–mail [email protected] Home address: Colostomy UK volunteers, who all have stomas themselves, attend stoma care Open Home addrDaysess: all over the country whenever possible. Do come along, call at our stand and have Postcode: Postcode:a chat. UA Urostomy Association Telephone (home): Mobile: www.urostomyassociation.org.uk TelephoneOpen (home): Days that we are aware of at the time of going to press are listed Mobile: below. An up to Telephone 01386 430 140 Email: date list, including events in your area, can be viewed on the Colostomy UK website. Email: e–mail secretary@urostomyassociation. Stoma Care Open Day Lincolnshire Coloplast Event Stockport org.uk Date of Birth: Month and year of operation: Healing Manor Hotel, Alma Lodge Hotel, Buxton Road, Date of Birth: Month and year of operation: Stallingborough Road, Healing, Stockport, SK2 6EL Reason for your stoma: Stoma type: Colostomy Ileostomy Urostomy ReasonNorth for your East stoma: Lincolnshire, DN33 2BA 15 October 2019 Stoma 1:00pm–4:30pm type: Colostomy MitrofanoffIleostomy Support Urostomy Tick as appropriate: I would like to be kept informed by: J Post J Email J Telephone. Please tick if you would like a receipt 1 October 2019 Contact: Coloplast: 0800 220 622 www.mitrofanoffsupport.org.uk Tick as appropriate: I would like to be kept informed by: J Post J Email J Telephone. Please tick if you would like a receipt I would like to receive information about: J Tidings magazine J Bag and product manufacturers J Colostomy UK, the work it does, Contact: [email protected] Telephone 07903 382 013 I would like to receive information about: J Tidings magazineArrowe ParkJ Bag Hospital and product Stoma manufactur Care Openers J Colostomy UK, the work it does, including training, conferences, volunteer opportunities and fundraising. e–mail [email protected] includingColoplast training, Event conf erLondonences, volunteer opportunitiesDay and fundraising. We will never sell or swap your information with other organisations. You can change how we communicate with you at any time. We willPenfold never sell Community or swap your Room, information Penfold with Court, other organisations.Floral Pavillion You Theatre, can change how we communicate with you at any time. Call us on: 0118 939 1537 or email: [email protected] 60 Penfold Street, Marlyebone, London, Marine Promenade, New Brighton, Call us on: 0118 939 1537 or email: [email protected] IOA International Ostomy Association NW8 8PJ Wirral, CH45 2JS www.ostomyinternational.org 1 October 2019 10:00am–4:00pm 16 October 2019 10:00am–2:00pm ou. ou. y I would like to make a donation of: Contact: Sam Fenton on gbsfe@coloplast. 0151 678 5111 Thank you for your gift y I wouldcom like toro mak 07721e a donation261 654 of: £20 £30 or whatever you are able to give £ Thank yJuniorou for Ostomyyour gift Support Helpline (JOSH) £20 £30 or whatever you are able to give £ Wolverhampton NHS Trust Stoma Care Thanks to the gift aid scheme – we can reclaim money on your via the Colostomy UK 24–hour free – thank Whiston Hospital Open Day Open Day Thanks to the gift aid scheme – we can reclaim money on your

I enclose a cheque or postal order made payable to Colostomy UK – thank donation from the government. For every pound you give us, we I enclose a cheque or postal order made payable to Colostomy UK UK St Annes Millenium Centre, View Road, Grand Central Hotel, Sundonation Street, fr om the government.helpline For ev 0800ery pound 328 y ou4257 give us, we

can claim an extra 25p. For example, a donation of £20 becomes UK my Please debit my Visa/Mastercard/Maestro Card with the amount specified Rainhill, Prescot, Merseyside, L35 0LE Wolverhampton, West Midlands,can claim an extra 25p. For e–mailexample, [email protected] a donation of £20 becomes

£25 with gift aid, at no extra cost to you. my Please debit my Visa/Mastercard/Maestro Card with the amount specified to £25 with gift aid, at no extra cost to you. to 3 October 2019 1:00pm–4:00pm WV10 0BF Card number (Maestro only) I want to Gift Aid my donation and any donations I make in the olos Card numbercall 01522 512 512 and ask for stoma care (Maestr23 Octobero only) 2019 10:30am–3:30pmI want to Gift Aid my donation and any donations I make in the future or have made in the past four years. I am a UK taxpayer and olos o C Contact: Stoma Care 01902future 307 or hav 999e made in the pastBreakaway four years. IFoundation am a UK taxpayer and understand that if I pay less Income Tax and/or Capital Gains Tax o C (Maestro only) (Maestro only) Shropshire B.O.T.S. (Bums on Tums) understand that if I pay lesswww.breakawayfoundation.org.uk Income Tax and/or Capital Gains Tax than the amount of Gift Aid claimed on all my donations in that (Maestro only) (Maestro only) Expiry date Security code Start date Issue No. 2019 Open Day Barnsley Hospital Stomathan Care the amount Open ofDay Gift Aid claimed on all my donations in that tax year it is my responsibility to pay any difference. Expiry date Security code Start date Issue No. Telephone 01283 240 253 The Memorial Hall, Smithfield Street, Fairway Hotel, Dodworth,tax Barnsley,year it is m y responsibility to pay any difference. D D M M Y Y e–mail [email protected] Owestry, SY11 2EG South D Yorkshire,D M M Y S75 Y 4LS Signed Date Signature: Date: / / 2019 Signed3 October 2019 10:30am–03:00pm Dat24e October 2019 Signature: Date: / / 2019 eturn this page t eturn this page t Irene Constable 01691 238 357 Stoma Care: 01226 432 528 Bowel Cancer UK [email protected] I would like to make a regular donation–Instruction to your Bank/Building Society to pay by Banker’s Standing Order: Annual Patients Open Day & Exhibition www.bowelcanceruk.org.uk I would like to make a regular donation–Instruction to your Bank/Building Society to pay by Banker’s Standing Order: ect, then r Coloplast Event London 2019 Telephone 020 7940 1760 ect, then r orr Bishop Crighton House, 378 Lillie Road, Bradwell Lodge, Bradwell Lane, e–mail: [email protected] To the Manager: (Bank or Building Society) orr e c To the London,Manager: SW6 (Bank 7PH or Building Society) Porthill, Newcastle Under Lyme, e c Email Bowel Cancer UK nurses: Bank Address: Postcode: Bank Addr4 Octoberess: 2019 Staffordshire, ST5 8PS Postcode: [email protected] Name(s) of Account holder(s): Contact: Sam Fenton on 07721 261 654 26 October 2019 11:30am–4:30pm details ar Name(s)or [email protected] Account holder(s): Contact: Moira Hammond details ar our Account number: Sort code: 07788 107 937 or 07788 402 195 Macmillan Cancer Support our y Account number: Sort code:

y Stoma Care Open Day I would like to make a regular donation* of £20 £30 or other amount (please state) £ www.macmillan.org.uk I wouldWanstead like to mak &e Snaresbrooka regular donation* Cricketof Club, £20 £30North or otherDevon amount Stoma (please Care Open state) Day£ Telephone 0808 808 0000 monthly quarterly annually starting on the 1st 15th 25th of month: year: London, E11 2LW The Barnstaple Hotel, Braunton Road, monthly quarterly annually starting on the 1st 15th 25th of month: year:Monday–Friday, 9am–8pm

orm, check 5 October 2019 1:00pm–3:30pm Barnstaple, Devon, EX31 1LE

thereafter until further notice. (Please cancel any previous standing order in favour of this beneficiary). orm, check thereaftWhippser until Cross further University notice. (Please Hospital canc Stomael any previous7 November standing or 2019der in 10:00am–1:00pmfavour of this beneficiary). *Please allow one month’s notice to ensure donation processes through banking system and state your donation amount in words: *PleaseTeam: allow one020 month8535 ’6563s notic e to ensure donation procContact:esses thr Cazough Smith banking 01271 syst 322em and 464 state your donationCrohn’s amount and Colitis in wo UKrds: Please pay: NatWest Bank, Market Place, Reading, Berkshire, RG1 2EP Please Addenbrookspay: NatWest Bank, Hospital Mark etPatient Place, ROpeneading, Day Berkshire, RG1 2EP www.crohnsandcolitis.org.uk Account name: C.A. Ltd Account No: 88781909 Sort code: 60-17-21 Addrenbrooks Hospital, Frank Lee Centre Telephone 0300 222 5700 Account name: C.A. Ltd Account No: 88781909 Sort code: 60-17-21 5 October 2019 10:30am–2:30pm e–mail [email protected] e, please fill in the f Name: (IN CAPITALS) Tell us of your open days to include e, please fill in the f Name: Contact:(IN CAPIT StomaALS) Care Team them on our website and in the next Signature: Date: / / 2019 SignaturSheffielde: Annual Stoma Care Open Day issue of Tidings. Date: / / 2019 o donat The IBS Network T o donat T Hillsborough Arena, Middlewood Road, Contact Colostomy UK, e–mail your www.theibsnetwork.org Sheffield, S6 4HA contact details to: Please fill in this form to make a donation. Check your details are correct, then return the completed Telephone 0114 272 3253 Please8 October fill in this 2019 form 11:00am–3:00pm to make a donation. Check [email protected] details are correct, then return the completed form by post to: Colostomy UK, Enterprise House, 95 London Street, Reading, Berkshire, RG1 4QA. e–mail [email protected] formNorthern by post to:General Colostom Hospital:y UK, Ent0114erprise 226 9156House, 95 London Street, Reading, Berkshire, RG1 4QA.

Telephone: 0118 939 1537 if you have any queries. Registered Charity No: 1113471 Telephone: 0118 939 1537 if you have any queries. Registered Charity No: 1113471 FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 55 | AUTUMN 2019 | 43 SUPPORT

Cheshire F.I.S.H.Y.S. (Friendship, Information, Channel Islands Countess of Chester Hospital Stoma Support & Help for Young Ostomates Support Group Guernsey (age 18-45) Stoma Nurses 01244 366 170 Guernsey Ostomates Email for more details: [email protected] Luci Deane 01481 236 077/ East Cheshire Stoma Support Group [email protected] Catherine McIntosh: 01477 535 071 Devon Stockport Support Group Devon IA Jersey Marion Caulfield: 0161 320 9400/ Martin Hornby: 01458 251 095 or Jersey Ostomy Society 0800 652 6667 email: [email protected] Fiona Le Ber: 01534 445 076 or Warrington Ostomy Support Group [email protected] Mid Devon Ostomy Support Group Louise or Joan on 01925 454 813 Janice - [email protected] or Cleveland tel: 0792 3975051 or 01884 799369 England Oops Group Plymouth & District Bowel Cancer Julie Morrisroe/Carol Younger/ Support Group Berkshire Alison Hall-O’Donnel: 01287 284 113 Wendy Wilson - Facebook: Plymouth E.B.O.C (East Berkshire Ostomy Club) Co. Durham Bowel Cancer Jackie Dudley: 01344 426 652 Bishop Auckland Stoma Care Group Dorset Reading Bowel Cancer Support Group Mrs Maureen Davison Tel: 01388 818 Colostomy Urostomy Pouch Ileostomy Ted Wingrove 0118 961 8297 or 267 email: [email protected] of Dorset - CUPID (Bournemouth) 07974 790 558 Darlington Support Group Beryl Andrews 01202 483 303 WAMS (Windsor, Ascot, Maidenhead & Margaret Clothier, Tel: 0191 333 2184 Colostomy Urostomy Pouch Ileostomy Slough) Stoma Support Group Durham Stoma Support Group of Dorset - CUPID (Poole) If you are interested in joining then Lynn Ridley Tel: 0191 333 2184 Jenny Pipe: 01202 740 440 please e-mail Giovanni: Cornwall Colostomy, Urostomy, Pouch & [email protected] or Cornwall & Plymouth Bowel Cancer Ileostomy of Dorset - CUPID (West call on 0118 939 1537 Support Group Dorset) Bristol The Secretary: 01872 241 145, Colin Clare - 01305 853 238 [email protected] or Bristol Ostomy Self Support (BOSS) Essex www.cornwall-bowel-cancer-support- Janet on 01934 248 114 or Connect group.co.uk Rob on 0117 966 8021 Lin Hart 01279 505 273 Cornwall Ostomy Support Buckinghamshire [email protected] Ken Jones: 01872 863 106 or High Wycombe Stoma Support Group www.cornwallostomysupport.org.uk Mid Essex Stoma Support Group Telephone 0800 318965 Paul Foulger: 01245 224 374 Lanhydrock Ostomist Group Milton Keynes Stoma Support Group Mandy Rowe: 01726 832 642 N.E.S.S (North Essex Stoma Support) (MKSSG) [email protected]; Brian Waller 01206 540 449 Morag Harvey (Secretary) Henry Kendall: 01208 850 986 Optimistic Ostomates [email protected] 07843 768 386 [email protected] Angela Taylor 01702 385 510 You Are Not Alone Stoma Support Cumbria Redbridge Ostomists Club Group Grange Cancer Support Drop in Stoma Nurses - Chris/ Carla 07846 354 918 Marie O’Connor 01539 533 279 Lisa: 020 8970 8321 e-mail: [email protected] Stoma Support Groups in North STEPS - Stoma Essex Patients Support Cambridgeshire Cumbria 01268 451 937 or Peterborough Stoma Support Group - Stoma Care Nurses 01228 814 179 [email protected] Ostomistics Derbyshire Hampshire Alan Wright 01354 653 290/07836 661 Diverted Local Stoma Support Group Replummed stoma support group 102 http://www.ostomistics.org/ Diana Manning: 01283 541 311 www.replummed.me

44 | TIDINGS 55 | AUTUMN 2019 WEBSITE: WWW.COLOSTOMYUK.ORG SUPPORT Solent Ostomates Support Group Thanet Stoma Buddies Support Group Norfolk (S.O.S.) Kathy 01843 291 825 Kings Lynn Ostomy Friendship Support For information tel. 07527 707 069 or Lancashire Group [email protected] North Manchester and Bury Stoma For more info please call Southern Ostomy Group Support Group 01553 775 698/01553 674 962/ Caroline or Karen on: 07756 819 291 Julie Meadows (SCN) 0161 720 2815 or 01553 768 271 [email protected] 07774 263 563 STARS (SToma And Reconstructive The Hampshire Ostomates Support Oldham Stoma Support Surgery social support group ) Group June Wilde: 0161 312 5538 Sylvia Hughes 01263 733 448 Contact Nicki Beare on 07771 558 458 [email protected] or [email protected] Phoenix Bowel Cancer Support Group Norfolk Ostomates Support Group (on Waterside Stoma Support Group Sandra Peet: 01772 683 790, Hazel Derham: 023 8089 1934 or www.phoenixgroupbvh.com or Facebook too) [email protected] [email protected] Barbara Harris 01603 417 046/ 07789 581 312 Wessex Urology Support Group Kangaroo Klub, Blackpool stoma Mrs Jo Stacey: 07910 786 978 support group Northamptonshire For further details please contact Herefordshire Northampton Ostomy Support Group the stoma department at Blackpool Herefordshire Stoma Support Group 07801 316 403 (evenings) or Carol Steele 01432 880 656 or Teaching hospitals, Tel: 01253 956 620 Trish 07703 188 386 [email protected] or [email protected]. uk Northumberland Hertfordshire Berwick Ostomy Support Group Ostofriends Support Group Leicestershire Bobbie Minshull: 07714 479 320 Kirby Ostomy Support Group. Peter Lannen [email protected] Hexham Ostomy Group Colostomy, Ileostomy and Urostomy in 07501 137 511 Judith on 07967 927 286 Leicestershire Stevenage Ostomistics Northumberland Cancer Support Judy Colston: 01438 354 018/ Janet Cooper: 07464 957 982/ members@ [email protected] [email protected] northumberlandcancersupportgroup. Lincolnshire Isle of Man co.uk IOM Bowel Cancer Patient and Carer Friends East Coast Support Group Group Betty Williams - 01205 724 120, Sheila Nottinghamshire Heather Norman: 07624 480 973 - 01205 364 493 North Notts Stoma Support Group Tore and Nicky Norman: 01773 715 460 Isle of Wight Grantham Support Group Optimistics Bobbie/Rachel: 01476 464 822 Nottingham QMC Stoma Support CNS’s Sarah Capon & Sarah Varma London Group 01983 534 009 Bowel & other Cancer Support Rosemary Brierley: 0115 982 6691 Kent Newham Nottingham Stoma Support Ashford Stoma Support Group 020 8553 5366 Jenny or Kate: 0115 962 7736/ Carole Hobbs: 01303 814 014 Homerton Hospital Bowel & Stoma Mrs B Heath: 0115 966 3073 Atoms Support Group Support Group Shropshire Maria Culleton, SCN: 01227 769 679 or Angela Davy: 020 8510 5318 or B.O.T.S. (Bums on Tums) 07827 997 424 020 8510 7599 Irene Constable on 01691 238 357 Dartford Ostomy Group Support Rectangle - Colorectal Cancer Support (DOGS) Somerset Group Stoma Heroes Support Group Tracey or John: 07779 155 846 or Regina Raymond 020 7472 6299 07948 974 350 or Shane Green 07802 428 074 [email protected] South Woodford Support Group [email protected] Nurse Christina and Lisa: Dover Stoma Friends Group Support Staffordshire 020 8535 6563 Julie Bell/Ros Marshall: 01233 616 646 Outlook The North Staffs Ostomy and Support Group Organiser June Surrey & South London Bowel Cancer Support Group Golding: 01304 822 696 Support Group Moira Hammond 07788 402 195 or GOGS (Gravesend Ostomy Support Sue Berry: 01737 553 134 or [email protected] John Amos: 020 8668 0796 Group) County Stoma Group Time 2 Talk Tracey: 07779 155 846 or Christine Bryden 07757 911 726 or Helen: 07710 780 958 Ifrah Mohamed - 07463 838 718 [email protected] M.O.G.S (Medway Ostomy Group [email protected], Viki Support) Palmer - 07894 276 986 Norfolk Tracey: 07779 155 846; Newham Stoma support group James Paget Ostomy Support Group Helen: 07710 780 958 or Contact Lauren King 020 7055 5576 Sandra Hutchings: 01502 585 955 email [email protected] Merseyside Suffolk Maidstone Stoma Support Group I.C.U.P.S East Suffolk Ostomy Group Judy/Kirsty: 01622 224 305 Sue: 07742 237 013 Marion Fisher: 01473 311 204 Tunbridge Wells Stoma Support Group Bowel Cancer and Stoma Support West Suffolk & District Stoma Group Cathy Chitty/Mags Donovan Group (BeCauSe Group) Jessica Pitt stoma nurse: 01892 632 323 For further details please ring 01638 515 525 Sheppey Ostomy Group Support 07948 120 955 James Paget Ostomy Support Group (SOGS) Sandra Hutchings: 0150 258 5955 Shelley 07714 734 194/ St Helens Cancer Support Group [email protected] Denys Floyd- 01744 884 097 Surrey SWANS Stoma Support Group - Middlesex Epsom and District Stoma Support Swanley Inside Out Group Heather - 07711 445 312 Sarah Varma: 020 8235 4110 Lindsay, Trevor or Sheena: [email protected] Bob (chairman): 020 8428 4242 01372 735 925

FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 55 | AUTUMN 2019 | 45 SUPPORT Normandy Colostomy Support Group Dewsbury & District Stoma Support Fife Marina Harkins: 01483 233 126 or Group Fife Ostomy Support Group 07852 554 049 or Jackie Sanders: June 07884 003 945 or Ishbel Barr: 01592 772 200 [email protected] or [email protected] Lanarkshire 07815 603 742. Website: http://www. Hambleton and Richmondshire Ostomy Glasgow Stoma Support group normandystomagroup.wordpress.com Support Group Morag Sinclair 0141 779 1322 or Stoma Support Group Stoma Care Nurses - Judith Smith and Jackie McChesney 01505 324 052 Robin Young: 01428 723 255 Mary Hugil 01609 764 620/ Moray 07736 295 131 Moray Ostomates Support Group Sussex Harrogate Stoma Support group Meggie 01343 552 449 / Brighton & District Support after Stomas Stoma department office – Nurse Gill Kathleen 07789 684 285 (SAS) Wilson/Fiona Holtham 01423 555 786 Sylvia Bottomley: 01273 554 407 Scottish Borders Leeds Bowel Cancer Support Group Stoma Support Group Chichester Stoma support Group Lynda Castle (Colorectal Nurse Nancy Fraser: [email protected] The Stoma Care Team 01243 831 527 Specialist) 0113 206 5535 or 01450 374 012. Fiona Gentleman: The Ostomy Friends Group Scarborough Stoma Support Group [email protected] or Jane Quigley: 01323 417 400 ext 4552 Stoma Care Team: 01723 342 388 01450 371 063 West Sussex Princess Royal Stoma The Hull and East Riding Colostomy West Lothian Support Support Group GOSH (West Lothian) Tina Walker: 01444 441 881 ext 8318 Pete Smith: 07989 565 335 or Scott Pattison: 07502 163 644 Tyne and Wear Pete Rennard: 07939 518 642/ Bring Your Own Bag Stoma Support Gateshead Stoma Patient and Carer 01482 793 966 or Rosanna Grimsby: Group Support Group 01482 801 575. www.hercosg.org.uk Western General Stoma Team Stoma Care Nurses: 0191 445 3152 or 0131 537 1000 email [email protected] Northern Ireland NHS Molineux Support Group Wales John Burchell 0191 265 1047 County Antrim Royal Victoria Infirmary Support Group Colostomy UK Volunteers Northern Aberystwyth Stoma care nurse specialist: Ireland West Wales Stoma Support Group Shirley Jones: 0191 282 4116 Chris Wright: 07720 717 771 [email protected] Sunderland Support Group Belfast City Hospital Stoma Nurses Audrey Steele, Karen Boyd, Kirsty Bridgend Michele Downey 07704 949 30 Niblock, Annette Lambert, Emma Dunn Bridgend Ostomy Patients Support [email protected] tel 028 9504 5941 Group Warwickshire County Armagh Anita Brankley (Secretary) Warwickshire Stoma Support Group Craigavon Area Hospital 01656 645 602 or [email protected] or Claire Young/ Lynn Berry/ Tanya Garvie [email protected] Bob: 07564 680 803 028 3756 1845 (Direct Line) Carmarthenshire West Midlands Daisy Hill Hospital Support Group W.O.W.S. Wales Ostomy West Support Coventry Stoma Support Bernie Trainor: 028 3756 2932 (Direct Judi Hopkins 01267 237 847 or Martin - 07947 385 643 Line) Julian Boswell 01554 772 877 Wiltshire County Down Conwy Swindon IA North Down Stoma Support Group North Wales Ostomy Support Group www.swindon-ia.org.uk Adrian Ewing on 07850 741 511 Hazel - 07976 817 246 or Lesley - 07828 837 325 Wessex Stoma Support Group Ulster Hospital Karen Berryman 01980 590 599 Hazel/Martina: 028 9055 0498 Gwent or on [email protected], Londonderry Blaenau Gwent Self Help www.wessex-stoma.co.uk Causeway Support Group Celia McKelvie: 01873 852 672 After Mary Kane: 028 7034 6264 6pm Worcestershire Cwmbran Ostomy Support Group Kidderminster & District Collossus (COSG) Support Group Republic Of Ireland Philippa Lewis: 01633 791 339/ Brendon Drew: 01299 400 843 07504 713 069 Yorkshire County Mayo Mayo Stoma Support Mid Glamorgan Acorn Ostomy Support Group Marion Martyn: +353 94 902 1733 C.A.S.S Colorectal and Stoma Support 07580 693 155 (After 6:00pm) Group Airedale Stoma Support Dublin Chair person 01685 877 144 Bowel Cancer Support Group (ICS) Sue Hall: 01535 646 373 Dublin Pembrokeshire Barnsley Bottoms Up Stoma Support National Cancer Helpline: PSA (Pembrokeshire Stoma Group +353 1 800 200 700 or Association) Stoma Nurses 01226 4325 28 or Olwyn Ryan: +353 1 231 0500 Rosemarie Rees Paton: 01437 532 473 Celia Utley (Chairman) 01226 284 262 Powys Behind You (Calderdale & Huddersfield The Bracken Trust Cancer Support Bowel Cancer Support Group) Scotland Centre Stoma Care Nurses: 01484 355 062 Helen Davies: 01597 823 646 Ayrshire Bottoms Up (for urology and colorectal Ayrshire & Arran Stoma Support Group Rhondda Cynon Taf cancer patients) Jim Krasewitz: 07729 771 350 or Royal Glamorgan Stoma Care Support John Whelpton 07974 657 146 email: Susan Latimer 07790 929 268 Group [email protected] Stoma Care And Recovery (SCAR) Domenica Lear 01443 443 053 Bradford Stoma Support Group Maggie: 01294 271 060/ Swansea Please get in touch with Lisa Hall on 0781 773 6147 [email protected] or Swansea Ostomy Self Help Group 07552 276 747 Rhona: 01294 557 478 Glynis Jenkins: 01792 418 245

46 | TIDINGS 55 | AUTUMN 2019 WEBSITE: WWW.COLOSTOMYUK.ORG Fullx3 01v01r00 CUK Advert Not alone.qxp_Fullx3 01v01r00 CUK Advert Not alone 09/04/2019 10:42 Page 1 No one SUPPORT should face stoma surgery alone no. 1113471

Make sure they don’t – donate now To donate £5, text ColUK001 to 70970 To donate £10, text ColUK001 to 70191 online at ColostomyUK.org