06/06/2017 09:13 Page 1

Summer 2017 | Issue 46 Fr ee samples “The ski n a round my s toma nally feels h ealthy! I t’s just o ne l ess t hing to w orry a bout! ”

Thaila, ost omat e since 2010

Thaila uses Br av a® Skin Cleanser wipes t o help soothe her dry and irrit at ed skin. + What’s r ight f or y ou?

There c an be m any r easons f or s kin i rritation. I n T haila’s c ase, s he su ffers f rom d ry s kin and o ccasional l eakage. P art o f h er s olution i s t he Bra va® S kin C leanser w hich s he u ses to m anage a nd s oothe a ny r ed, s ore sk in a rou nd t he s toma.

The Br ava Sk in C leanser c omes a s a w ipe a nd c ont ains pro vitamin B 5 whic h s oo thes irritated s kin*, a s w ell a s a cting a s a m oi sturiser t o i mpr ove s kin h ydration*.

*Data o n le The Coloplast logo is a r egist er ed tr ademark of Coloplast A/S. © 2017-06. All rights r eserv ed Coloplast A/S, 3050 Humlebaek, Denmark.

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YES – please send me fr ee samples of the Br av a® Skin Cleanser

Please ent er y our det ails so we can send it t o y ou: Addr ess

First name

Surname Town/ City Post code

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Place the coupon in a sealed env elope ( without post age ) and send it t o: FREEPOST C OL OPLAST

By pr oviding y our personal inf ormation on this f orm y ou ar e consenting t o Coloplast using it f or administr ation and anal ysis purposes and t o pr ocess y our sample or der . We may shar e this inf ormation with heal thcar e pr of essionals and other companies r equir ed f or the deliv ery of y our pr oducts or as r equir ed by law . We may also cont act y ou t o clarify y our sample r equir ements and t o ask y ou t o complet e cust omer satisf action surv eys. Fr om time t o time we do let our cust omers kno w of ne w pr oducts or services which may be of int er est by phone , email or post . By submitting your inf ormation to us you consent to us cont acting y ou in this way unless y ou hav e indicat ed that y ou would pr ef er f or us not t o do so , by ticking one or mor e of the bo xes. Please do not cont act me by Email Phone P ost FROM THE EDITORIAL TEAM

EDITORIAL TEAM

Editor Colostomate & Helpline Volunteer Rosemary Brierley Assistant Editor, Trustee, Colostomate & Volunteer Sarah Squire Colostomate & Helpline Volunteer Jackie Dudley Trustee, Colostomate & Helpline Volunteer Ian Jackson dear READERS Colostomate & Volunteer Philip Young Stoma Care Nurse Advisor Julie Rust RGN, Dip, N MSc Our cover this time promotes Colostomy never known life without a colostomy. She Day. It was in 1992 that the three UK Marketing Officer was diagnosed with Hirschsprung’s disease Clare Matthews stoma support Associations got together and had surgery to form a colostomy when to organise World Ostomy Day held every she was a tiny baby. Now 79 years later she Products & Services Officer three years to promote awareness of Arvind Anand writes about A life worth Living . When she people living with a stoma. Then on the was a child there were no patient support first Saturday in October 2014 the organisations for people with stomas. It Colostomy Association launched an would be in 1967, almost 30 years after she annual event to complement this was born, that the Colostomy Welfare Cover picture internationally–recognised awareness Group (CWG) became a registered charity. Sarah Squire, Ian Jackson, Jackie Dudley, Shell Lawes day. Now known as Colostomy Day, the and Abi Brown promoting Colostomy Day – Find out To coincide with the 50th Anniversary this more on pages 28 and 29 aim is to change the general public’s perception of stomas to make people year we trace the charity’s history, first as the CWG then the British Colostomy How to contact Tidings aware that having a colostomy can be a positive change. Association (BCA) and now the Colostomy Editorial Enquiries Association (CA). On 16 September this A stoma not only saves lives but it can also Letters, articles or other submissions year we celebrate half a century of h improve the quality of life. Rob Fearn is an e–mail supporting people with stomas at an Open example of this. His colostomy was formed Day, a Fashion Show and Dinner at [email protected] during emergency surgery, but he or write to the address below. Wokefield Park in Berkshire. welcomed it; his life was no longer restricted Advertising enquiries by the bowel problems he had experienced During the last few years I have really For a media pack and advertising rates for more than fifteen years. He was free to enjoyed editing Tidings . It has been a privilege to meet and correspond with e–mail pursue his hobby of wildlife photography [email protected] and three years after his surgery he has won committed health professionals and many or telephone 0118 918 0500 the Daily Mail Weekend magazine wildlife other people who, like myself, cope every photography competition. day with a stoma. At the end of the year, To request (or cancel) your quarterly copy however, I plan to step down from my An acute attack of diverticulitis was the of Tidings voluntary position as editor of Tidings . This e–mail [email protected] reason that Rob had emergency surgery to is for two reasons: Firstly, to hand over to or telephone 0118 939 1537 form a stoma. Following on from his story someone with fresh ideas and who is we have an article explaining this condition. familiar with modern technology and more Postal address It is written by Alison Horner who has not Colostomy Association only spent a large part of her nursing career involved in social media. Secondly, to return Enterprise House 95 London Street working on colorectal wards and operating to writing the book – on a subject far Reading RG1 4QA theatres but has also had diverticulitis removed from stomas – which I ‘put on the which led to emergency surgery to form a back–burner’ when I was asked to head up Tidings Magazine: the editorial team in 2014. I will, however, The views expressed by the contributors are not colostomy. necessarily those of the Colostomy Association. Great remain as editor for the autumn issue and care has been taken to ensure accuracy, but the On the Dear Nurse page, we have two look forward to receiving your letters and Colostomy Association cannot accept responsibility for questions about rectal discomfort following errors or omissions. reading about your real–life experiences. stoma surgery. We asked Andrew Bird, who Disclaimer: I hope that many of you are able to join The display, description or demonstration of products has worked as a specialist nurse in both and services or the inclusion of advertisements, inserts stoma care and pain management to write us on 16 September to celebrate the and samples within Tidings Magazine does not about why this can happen and how this Association’s 50th Anniversary and will be constitute an endorsement or recommendation of these products and services by the Colostomy discomfort can be treated. out there on 7 October raising awareness Association. on Colostomy Day. Joanne was 38, Abi was 40 and George was ©Copyright 2017 Colostomy Association. All rights 62 when they were diagnosed with cancer. With Best Wishes reserved. No part of this publication may be reproduced, stored in a retrieval system, or In their real life stories they all say that Rosemary transmitted, in any form or by any means, electronic, having a colostomy was a positive change mechanical, photocopying, recording or otherwise, except as permitted by the UK Copyright, Designs and as it saved their life. However, they all admit Rosemary Brierley Patents Act 1988, without the prior written permission that it took time to come to terms with life Editor of the publisher. All marks acknowledged. with a stoma. Janet, on the other hand, has [email protected]

| 24 HOUR HELPLINE: 0800 328 4257 TIDINGS | SUMMER 2017 | 3

TIDINGS CONTENTS How to get in touch with the inside this issue Colostomy all your regulars & special features Association The Association represents the interests of colostomates and other ostomates. We provide support, reassurance and practical information to anyone who has or is about to have a Colostomy.

How to become a supporter of the Colostomy Association

Simply contact us by post: Colostomy Association Enterprise House, 95 London Street Reading RG1 4QA Cover Story Living with a Stoma 28 Colostomy Day 18 Irrigation By telephone: General Enquiries: 0118 939 1537 Past and Present CA News 34 Stoma and Sanity Stoma care queries only: Joanna Phillips Freephone Helpline: 0800 328 4257 6 Bulletin Board 10 Looking back and By E–mail: moving forward Real Lives ca s s@ colostomyassoc i ation.org.uk History of the Colostomy 8 A Life worth living Find us on FACEBOOK: Association Janet’s 79 years with a stoma 13 Colostomy Association 50th Anniversary 22 ‘Focusing’ on a better 16 September 2017 life Join our ‘closed’ group today simply Rob Fearn put Colostomy Association into your 16 Fundraising FACEBOOK search bar, click on Group A thank you for your generous 26 Pathway to a and click on ‘Ask to join’ you will be assured of a warm welcome! donations and fundraisers colostomy Lorraine’s experience of Visit us and register at: 21 Colostomy Association www.colostomyassociation.org.uk 2018 Calendar diverticular disease Don’t delay 31 The diagnosis that From Health changed our lives Donate Online today! There are NOW two ways to donate Professionals Margaret and George online 24 Diverticular disease 1 Alison Horner Support Advanced Nurse Practitioner 15 Online support 36 Rectal discomfort Facebook following colostomy surgery 43 Readers’ Writes Andrew Bird Your letters and e-mails. Visit the Colostomy Association website and simply click on the donate panel on Lead Stoma Care Nurse 46 Stoma Aid the home page. Specialist Queens Medical Centre, 51 Local support 2 Nottingham News from stoma support groups Visit the Just Giving home page you will see 40 Dear Nurse a search panel ‘Find a Charity’ type in Julie Rust answers your letters 52 List of local support Colostomy Association. and e-mails groups

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

| 24 HOUR HELPLINE: 0800 328 4257 TIDINGS | SUMMER 2017 | 5 LATEST NEWS Bulletin Board

NEWS AND UPDATES Stoma Friendly Society As the UK’s largest stoma charity, we strive to be a voice for the ostomy community and will champion the rights and raise awareness of people living with a stoma

Toilet Campaign Following the news that Stoke City FC now have stoma friendly toilets and signage we are pleased to say that West Bromwich Albion FC and Leicester City FC have also joined our campaign. Colostomy Association Volunteer Irene Constable (pictured right) has been working hard in her home town of Oswestry to make toilets stoma friendly. At the end of March she was joined by the Mayor to officially make the town centre public toilet stoma friendly.

Toilet Consortium In April we joined the following charities: Around the Toilet, British Toilet Association, Crohn’s and Colitis UK, Public Toilets UK, and The IBS Network for the first meeting of the newly formed Toilet Consortium UK. The group’s aims are to make public toilets more accessible and to be a united front campaigning on toilet related issues. We will keep you updated.

Holby City got it wrong In April the BBC aired an episode of Holby City that portrayed additional £2 billion to councils in England to spend on adult social having to have stoma surgery in a negative light. As part of our care services. campaign to reduce the stigma around having a stoma we released a statement to the press and the BBC making known our This is considered a stop –gap measure to enable councils to take disappointment. immediate action to fund care packages and relieve pressure on the NHS. The government has advised that it will be publishing a Social Care social care green paper sometime in the future. At the Colostomy In January we joined 75 organisations in signing an open letter to Association we are taking a keen interest in developments and, the Prime Minister calling for her to urgently begin cross –party in partnership with the Care and Support Alliance, are working to talks to find a long –term solution to the crisis in health and social ensure that the issue doesn’t drop off the agenda. So watch this care funding. In the spring budget the chancellor announced an space for updates!

Appointments

As you may know Sue Hale, left We would like to welcome the Colostomy Association in Libby Herbert as our new February for ‘pastures new’. Sue General Manager. Libby’s joined us over five years ago background is in Engagement, and whilst she has been with Internal Communications, us the Association has grown Recruitment & Human from strength to strength. Resources, Event Management During her time as General and Office Management Manager, Sue oversaw the within various sectors. Association’s move to larger She was born in Kenya and offices and recruited staff to lives with her husband Steve develop fundraising and in Reading. The trustees and marketing. She was responsible staff look forward to Libby for the very successful 2015 becoming part of the team, Colostomy Association Open getting ‘up to speed’ on the Day and fashion show, for the launch of Colostomy Day in 2014 great work the Colostomy and for creating links with other bowel –related charities. Sue Association is involved with and bringing a new perspective on leaves with our best wishes for her future and grateful thanks from what we do and how we do it. us all for the inestimable contribution she has made.

6 | TIDINGS | SUMMER 2017 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK LATEST NEWS

Active ostomates Our Active Ostomates project launched in January 2016 with our free booklet ‘sport and fitness after stoma surgery’ and the start of a chair yoga pilot with the East Berkshire Ostomy Club. The booklet has been extremely popular with over 1,000 distributed already. As well as examples of core exercises that can be safely tried at home, it advises ostomates how and where they can get back in to or take up sport for the first time after surgery. The chair yoga pilot proved a success and we have extended the project to support groups in Ealing, High Wycombe, Stevenage, Milton Keynes, and Chester, with plans to extend further later in the year.

Caring for Ostomates Our ‘Caring for ostomates’ project is a National Lottery funded programme that provides both professional carers and family members with practical advice and guidance on how to care for someone with a stoma. The project has allowed individuals, support groups, care home and agency staff and reablement teams in Berkshire and the Home Counties to benefit from an intensive three –hour workshop that covers everything from stoma management, to a guide to different appliances, common concerns, support from Stoma Care Nurses, and psychological issues connected with having a stoma. By educating care staff on the practical and emotional side of stoma care the Colostomy Association can directly improve the quality of life of those ostomates who need regular care and support. While the National lottery funding ended at the end of 2016, the project is continuing and also branching out geographically and in terms of the type of guidance it gives. If you’re interested in finding out more about our projects please email [email protected] How your donations help 2016 was a very busy year for the Colostomy Association . Your donations helped us to: ❖ Respond to 7,000 calls for help and advice from ostomates. ❖ Attend 118 open days. ❖ Send out over 19,000 information leaflets and booklets to stoma care nurses, across 339 hospitals and 69 other locations (GP surgeries, care homes etc.). ❖ Publish Tidings and distribute 25,000 copies each quarter. ❖ Help our Stoma Aid project collate and send 182,080 stoma bags to developing countries. ❖ Encourage ostomates to be fit and healthy through our Active Ostomates campaign. ❖ Train family members and healthcare professionals to better look after a person with a stoma through our Caring for Ostomates project. ❖ Raise awareness of the day –to –day issues faced by ostomates through our Stoma Friendly campaign. Thank you

| 24 HOUR HELPLINE: 0800 328 4257 TIDINGS | SUMMER 2017 | 7 REAL LIVES by the many benefactors of the hospital. Another memory is of being evacuated to another hospital in Surrey in 1940 when the bombing of London was at its height. Last year I had the privilege of having a guided tour of Great Ormond Street Hospital along with other ex–patients and former staff and to visit Peter Pan Ward where I spent so much time as a child. It was soon to be demolished but the nursery–rhyme wall tiles that I remembered had been saved and now take pride of place in a reception area. Going back to my childhood, when I was finally allowed home I found life was going to be so different. After my mother died, my father’s sister moved in to look after the family. She was very Victorian in her ways and very strict. She told me that I was going to be brought up in a very tough way, in her words: “to help you cope with the knocks life will throw at you” and yes, I have taken quite a few knocks, but thanks to her have 2013 Holding my greatgranddaughter always managed to bounce back. Growing up pre NHS with a colostomy was not easy, things that medical staff encourage A Life worth living today were taboo back then. I was forbidden to do any PE at school, not that I minded getting out of having to play hockey It was bank holiday Monday 1 August on a freezing cold day. Diet was also 1938 when I arrived in the world. My restricted to foods like steamed fish and egg eight–year old brother was not very custard which were easy to digest and pleased as Mum and Dad had promised which I still dislike eating today as much as to take him to the seaside for the day. We I did then. Few appliances were available in lived on the south coast and as it turned those days. In my case, it was a pad of out that was the last opportunity they cotton wool, on top of that a sort of plastic would have to take him as the following disc and this was all held in place with a year, with the threat of war with Germany surgical belt which was neither effective nor looming, barricades of barbed wire were comfortable. As you can imagine, ‘accidents’ erected on the beaches. were a frequent occurrence. We really are After a while it became apparent that all spoilt for choice now, well in this country at was not well with me. Doctors at the local least. My heart aches when I read about the hospital were unable to find out what was conditions that people with a colostomy wrong and, as my health deteriorated, I was have to endure in developing countries. hastily christened in our nearby church then By the age of 12 I began to feel more taken to Great Ormond Street Hospital in confident about life, but then I had more London. It was here that the eminent health problems and operations to surgeon, Thomas Twistington Higgins, soon overcome. So many stays in hospital meant diagnosed the problem. I had been born that my education was disrupted and I left with Hirschsprung’s disease; he operated school with no qualifications. In all, I have and my journey through life with a 1939 In Peter Pan Ward at Great Ormond Street Hospital had surgery from top to toe, but I am still colostomy began. here to tell the tale. children which were then posted to the Until the age of seven I was to spend long parents to reassure them that their child After leaving school I found work in a local periods of my life in Great Ormond Street was in safe hands. factory as this was the only employment undergoing several more operations. It was opportunity open to me. From here on life during this time that sadly my mother was My only bad memory of Great Ormond progressed as near normal as I could have to die from TB which was then rife in Street was going to theatre. Back then there wished. I did everything that all other England, so I never got the chance to know was no injection to send you to sleep teenagers were doing: dances on Saturday her. Things were so different in hospital in beforehand, just a black rubber mask forced nights, visits to the cinema several times a those days. Visiting was not encouraged on your face, before an anaesthetic was week and get–togethers in pubs if anyone because of the fear of infection and in case administered. Christmas was magical, the had a birthday to celebrate. It was at one of the children became upset and of course nurses wore their capes with the red side these birthday celebrations that I met my when World War II broke out travelling to showing and walked through the wards future husband. He was home on leave London became dangerous. To compensate carrying lanterns and singing carols. Then from the Royal Navy. We got talking and it for this the hospital took photographs of the they distributed wonderful presents given turned out that his aunt worked at the same 8 | TIDINGS | SUMMER 2017 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK REAL LIVES factory as I did, and, to cut a long story short, Although I am alone again, I am not lonely he asked if I would write to him while he as both my son and daughter had three was away. We corresponded for 18 months, children so I now have six grandchildren and when he left the Navy we got engaged. and three great grandchildren. My life is so full with family and a wide circle of friends; It was then I told him about my colostomy. we go to the theatre, concerts and on day Although I was not ashamed of my trips together. I am involved with my church condition, in those days, people did not talk and WI, belong to a scrabble group, go about personal things like that, so it was not walking and love hosting dinner parties. until that point in our relationship that I felt Being a football fanatic there is nothing I I wanted to say anything. I was lucky in the enjoy more than the chance to go to the fact that in the Navy he had served Emirates Stadium to watch my beloved alongside someone who had a colostomy Arsenal play. which made it easier to explain. We went to see my GP together but, rather than try to In recent years, I have caught the travel bug help, he put obstacles in the way. He told and have managed to travel around most us that I would never be able to have of Europe, the USA, taking in eight different children and said to think carefully about states from Dallas to Washington DC getting married at all. including New Orleans, which because of my love of jazz was a dream come true. We were married a year later, something Going to China was a wonderful that I had thought would never be possible experience, but a word of warning, the for me. I remember I bought some public toilets can prove a bit of a problem suspender belts, cut off the suspenders and if you have a colostomy. It is better to use wore them instead of the horrible surgical toilets in hotels or better–class restaurants. belt. It made me feel more feminine. You are also warned not to use water from Despite what the doctor had said, I became taps, not even to clean your teeth. So pregnant in 1960. I had to buy an old– something else to consider, but despite fashioned corset that laced up at the sides everything, China is still an amazing country so that I could adjust it to fit my bump. I was 2009 At the Colosseum in Rome to visit. able to have a natural birth and was blessed with a son and then later a daughter. I hope my story has given you inspiration heard they were advertising for nursing and encouragement to live life to the full. I cannot remember when stoma bags auxiliaries on the psychiatric ward at the became available, but I think it must have local hospital. I went for an interview and My grateful thanks to all the people who been the late 1960s. They were everything was lucky enough to be offered the post and have made my life worth living. that the present–day stoma bags are not: spent 13 years doing a job that I really loved. Janet flat, noisy, the adhesive almost non– After some years of living alone and existent and they did not fit the uneven working hard, a new man entered my life. surface surrounding the stoma. The first Medical Terms Explained He had been a family friend for a long time time I saw a stoma care nurse was in 1989. and already knew that I had a stoma. When Hirschsprung’s disease is a condition, Unfortunately, after 32 years our marriage he underwent the same surgery, I was able present from birth, in which nerve cells ended in divorce. Although I had worked to reassure him. We eventually married and that control the movement of faeces are part time whilst bringing up the children, I were very happy, but this wasn’t to last as, absent in part of the bowel. This results knew I would have to find full time work to after just three years of marriage, my in pain, constipation and blockage. support myself. As luck would have it, I husband died.

| 24 HOUR HELPLINE: 0800 328 4257 TIDINGS | SUMMER 2017 | 9 COLOSTOMY ASSOCIATION HISTORY

Looking back and moving forward

As you may know we have been result of Frances’ involvement, the King researching the Colostomy Association’s Edward’s Hospital Fund provided the history in readiness for our 50th money to conduct a pilot study into the anniversary. With so much material in need for a national service for the archives it hasn’t been easy! In the colostomates. 29 hospitals in London took last half century, we have changed part. The findings of the study led to the names three times and occupied five founding of the Colostomy Welfare Group, different premises. From humble which advertised for its first member of staff beginnings in a London hospital, we now in November 1966. have over 23,000 registered supporters nationwide. More recently, through our Stoma –Aid campaign we have started to reach ostomates across the globe. To make sense of our history we have divided it into a series of periods, which you can read about below. First though, it’s worth saying something about the context in which today’s charity was formed. Our origins can be traced to the 1960s.

This was a torrid time as it had become Emily Brain MBE, pictured in later life clear that scientific advances were creating a cost dynamic in the fledgling NHS: with began life operating out of two rooms at St each advance, more people could be Luke’s Hospital, Chelsea. treated. In an attempt to reconcile the As you can see, much was achieved in the problem, government put its faith in years that followed. technology and modernisation. They envisaged that building state–of–the–art 1967: With demands for the services of the District General Hospitals was the way to group spreading to other hospitals, the offer high quality healthcare while at the CWG became a registered charity. same time containing costs through 1970: As demand continued to grow, the Frances Goodhall (1893 –1976) CBE, MBE economies of scale. With government charity struggled to raise sufficient funds. In convinced that ‘modern’ was good, some Frances Goodhall came from a medical order to continue its activities, CWG applied feared patients might just become family. Three of her uncles worked at for, and was granted, £5,000 from the ‘medical problems’ to be solved through Guy’s and in 1916 she began training as National Society for Cancer Relief (now the application of technology. Luckily, at a nurse at the same hospital. This Macmillan Cancer Support). This covered the coalface, healthcare professionals were marked the start of a stellar career in the bulk of operating costs. not prepared to allow this dystopian vision which ophthalmic nursing became her to become a reality. At one London great love. According to her biographer, 1972: CWG moved to new premises in hospital the therapeutic value of human Monica Baly, Frances’ delicate hands and Ecclestone Square, London. It also became contact was appreciated by one of the skill in the field became legendary. At the one of four ‘associated charities’ financed by the National Society for Cancer Relief. surgical registrars. In 1963 he approached age of 35 Frances was appointed This arrangement continued for the next 33 Gertrude Swithenbank (herself a assistant general secretary of the College years. colostomate) and asked if she would visit of Nursing. In 1935 she took over as his colostomy patients on the wards. It general secretary. In this capacity she 1980s: Consultant surgeon Mr Brendan quickly became clear that her visits contributed to post–war discussions Delvin CBE, FRCS, assisted in the encouraged recovery. She provided the about the NHS, coming into contact with preparation of support literature. Foreign reassurance that patients needed and figures such as Nye Bevin. By the time language versions were also produced. As proof that it was possible to lead an active she retired, Frances was well respected you can see from the photos, our literature life after stoma surgery. in medical and political circles. has since undergone substantial change! In the same year as Gertrude started her Late 1980s: CWG had developed a hospital visits she told Frances Goodhall The Colostomy Welfare Group greater presence being mentioned in about what she was doing. By 1963 Frances (CWG) 1967–1989 the publications of other charities, had been retired for some years, which The recruitment advertisement (reproduced manufacturers and suppliers, as well as in suggests that the women may have known in the last edition of Tidings ) resulted in the leaflets written by healthcare professionals. each other. One possibility is that they had appointment of Emily Brain as welfare By now, the CWG had also established a worked together as nurses. Either way, it officer. Emily went on to become our network of area organisers and visiting was an important connection. In 1966, as a general secretary from 1968–79. The CWG volunteers (all colostomates). 10 | TIDINGS | SUMMER 2017 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK COLOSTOMY ASSOCIATION HISTORY 1992: Following a meeting with the IA and continue was there. The idea that the Urostomy Association the three charities ostomates might be left without support set up a co–ordination committee to and that four decades of hard work could organise the first World Ostomy Day. This be lost was inconceivable. Eight people event, which aimed to raise awareness of came forward to act as trustees and the needs and aspirations of ostomates, has on 15 November 2005 the Colostomy continued ever since. Association was formed. To accord with the change, the new charity launched a 1998: The first issue of Tidings was website to further reinforce its message that published and announced that consultant help was there for people in need. The last surgeon, Mr Brendan Delvin (involved since twelve years have been exciting times, the early days of CWG) had agreed to including the challenge of raising our profile succeed Sir Ian Todd as the BCA’s next on the internet and reaching out to president. Sadly, Mr Delvin died six months An early booklet, ostomates in the new digital age: date unknown later. 2008 & 2013: Saw moves in premises, with 2000: Tidings started to include the Colostomy Association ending up at advertisements as a way to cover Enterprise House in Reading, where we are production costs. Initially adverts were today. enclosed as loose inserts. The iris emblem underwent change with a new bolder look. 2010: Further improvements were made to British Colostomy This coincided with the release of a revised the website making it easier for ostomates Association, 2000 set of literature. Colorectal surgeon to access news and information. By 2015 Professor Robin Phillips became the BCA’s the site was receiving over 513,000 visits new president. per annum. 2002: Helpline hours were extended to 2012: The Colostomy Association’s include weekends and bank holidays. Facebook group was made ‘closed’. Within a year it had 1,000 members. Today, this ever–growing and vibrant community The first issue of numbers well over 4,500 and provides a Colostomy Tidings , July 1998 Association, 2009 vital, safe environment in which ostomates talk and support one another. 2014: Mr Ian Daniels took over as our president from his colleague Professor Bill Tidings , Spring Heald who had held the position since 2017 2008 and was an internationally known colorectal surgeon. The Colostomy Association launched its Junior Ostomate Colostomy Support Helpline aimed at providing Association, 2017 support to the families and carers of children with stomas and other bowel and bladder dysfunctions. 2015: The first monthly e–newsletter was Iris Emblem, sent and in excess of 84,000 copies of 2005 Tidings were distributed. The British Colostomy 2016: Saw the start of two new campaigns: Association (BCA) 1989–2005 Stoma Aid and Stoma Friendly Society. By the end of October more than 182,000 As the CWG became well known, issues stoma bags had been distributed to emerged with its name. The word ‘welfare’ developing countries, while our stoma was the problem. It was felt that this friendly toilet stickers started to appear at was misleading and gave the impression sites across the country, following a letter that financial support was on offer. and social media campaign. Consequently, the name ‘British Colostomy Association’ was adopted in 1989, with the Looking Forward… purple iris as its emblem. Rent increases We hope that you’ve enjoyed this trip Iris Emblem, led to the BCA relocating to Reading. It 2016 down memory lane and seeing how the was from here that the first issue of Tidings Colostomy Association has developed was published, the 24–hour helpline was over the past half century. We are confident launched and the charity continued to build The Colostomy Association, that the next 50 years will be just as its impressive portfolio of literature. By 2005–to date exciting. As well as continuing to provide all 2005 BCA was taking in excess of 6,000 In 2004, what was now the Cancer Relief our current services we have plans to phone calls per year, sending out 25,000 MacMillan Fund, announced its intention expand the support that we give. We’re leaflets to ostomates and healthcare to discontinue the financial support of looking forward to sharing these plans with professionals and had volunteers across the ‘associated’ charities. The BCA thus faced you in the months and years ahead. In the country visiting patients, talking to them on the daunting prospect of trying to go alone, meantime, don’t forget our Open Day on the telephone and attending open days. becoming a self–funding charity. Luckily 16 September. It would be great if you The BCA years had many other highs: both the appetite, energy and courage to could drop by and say ‘hello’! ■ | 24 HOUR HELPLINE: 0800 328 4257 TIDINGS | SUMMER 2017 | 11 NE W!

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CA NEWS FROM THE OFFICE 50th Anniversary Open Day 2017 and Fashion Show Saturday 16 September 2017

Booking Form

I would like to attend the following Colostomy Association events at Wokefield Park Goodboys Lane Mortimer Reading RG7 3AE

(please insert the number of places required): Quantity

Open Day only ...... Free of charge

Open Day, Fashion Show and Evening Meal ...... £25 per person

Fashion Show and Evening Meal only ...... £25 per person

I enclose a cheque made payable to ‘CA Ltd’ totalling ...... £ .

Details: Title: First Name: Surname:

Address:

Postcode:

Telephone (home): Mobile:

Email:

Dietary requirements:

————————— PLACES ARE LIMITED SO PLEASE BOOK EARLY TO AVOID DISAPPOINTMENT —————————

NOTE: Please remember to book your own overnight accommodation if needed.

Please return this form to: Colostomy Association, Enterprise House, 95 London Street, Reading, RG1 4QA no later than 31 August 2017 , but bear in mind places are strictly limited so it will be best to book early to avoid disappointment.

Official tickets for the Fashion Show and Dinner will be sent to you nearer the time.

| 24 HOUR HELPLINE: 0800 328 4257 TIDINGS | SUMMER 2017 | 13 Specialists i n t he d ispensing and h ome d elivery o f s toma medical a ppliances.

Join the Fittleworth service We deliver direct to your door TODA Y from one of our 38 Care Centres throughout the UK

We are open 6 days a week: Ostomy nurse specialists Monday to Friday 8am to 8pm available to provide free advice and Saturday 9am to 1pm support between 9am and 5pm Monday to Friday You can order through Fittleworth in 4 ways by post, by phone, order call reminder Overseas emergency cover and online at www .ttleworth.com World Assist Alliance

Electronic prescription and prescription collection service from your GP

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Registered in England: No . 01836221. Registered Of fice: Fittleworth Medical Limited, 10-18 Union Street, London SE1 1SZ .

0N – LINE SUPPORT

Colostomy Association Facebook Group

Group Meet in Scotland

Sarah Squire , Trustee and Facebook Admin writes:

Tai Chi practice at the Group Meet in Glasgow

The CA Facebook Group is an active Bellahouston Park. We had the top floor of lower incidence of problems compared to online support group of over 4,500 the house and it was a beautiful setting the average. members. New members arrive, with amazing views. We were met by By now I was hearing murmurs about some sometimes with many worries about life Coloplast and Charter representatives: rugby game that was taking place between with their stoma and the Group pull Adrian Summerson, Senior Market England and Scotland. This is the second together to help out. Friendships form Manager, Wendy Osborne, Ostomy Clinical Meet Up where I have managed to clash while problems are shared and solved, Lead, Rebecca Preston, Territory Manager with a Six Nations match so we headed to often with a few laughs on the way. Scotland, along with Claire and Damian. the Premier Inn where many of us were Group Admins: Ian, Michael, Sally, Steve After tea, coffee and those all–important staying so those who wanted to could catch and myself try to arrange a couple of hugs, the day began with interesting up with the game. After a very good result Group Meets a year in different parts talks on the history of Coloplast and for England (apologies to our Scottish of the country where members can meet Charter by Claire and Rebecca, followed hosts!) we met for drinks and dinner, kindly in person, where virtual hugs can be by a talk on hernias by Wendy. With covered by Coloplast. We held a raffle with turned into real life ones. hernias being so common in ostomates it a number of prizes including umbrellas In March 2017 we were kindly invited to was great to have chance to interact with donated by Vanilla Blush, Stoma Aid tote Glasgow by Coloplast. Ian and I attended Wendy and ask questions. I, for one, learnt bags, goodies donated by Group Admins a conference in Edinburgh last year and a few things. plus of course a Tomas Bear personalised spent the two days manning the Colostomy for the Meet. Many people donated the We broke for lunch (lovely spread Association stand opposite Coloplast. Here deposit they’d paid to secure their place on Coloplast!) then carried on the afternoon we met Damian Crombie, NHS Liaison the Meet and that along with raffle ticket with a talk about sore skin – another hot Manager, and we happened to mention we sales resulted in a brilliant £200 raised for topic for us ostomates and again most were keen to hold a Facebook Group Meet the Colostomy Association . interesting. By that point we had been in Scotland. He said Coloplast/Charter sitting down for a fair amount of the day so We had a lovely day and I would like to would be happy to get involved – I didn’t to encourage us to be active ostomates, thank Coloplast for hosting the event and need asking twice and was on it as soon as Coloplast had arranged for us to have an for being great company. To any Facebook I got home! introduction to Tai Chi. This was great fun Group members who would like to attend Claire Jackson, Territory Manager for and, although many of us collapsed into fits one of these Meets we hope to see you at Scotland, did an amazing job of organising of giggles at various points, it was great to the Colostomy Association Open Day in the event and despite my constant emails see everyone joining in and enjoying the September, and keep your eyes peeled on asking this, that and the other about gentle exercise. Those who weren’t able the Group for the next event. venue, food, accessibility and much more, to take part seemed to have almost as she came up with the perfect day. This much fun watching and taking some very was our first official Meet Up in Scotland ‘interesting’ photos! If you would like to join the closed CA and it was lovely to see so many local Facebook Group, search “ Colostomy After a quick pit stop for a cuppa and a tasty people attend, along with a few die hard Association ” in your Facebook search cake we returned for the final session with members who travel anywhere for the box. Choose the Group and when you Adrian who was so relaxed after the Tai Chi Meets, this time travelling hundreds of get the Group page, click on the join that he led the session with no shoes on! miles to join in. tab. One of the admins will add you as We discussed life with a stoma and soon as they can. We look forward to Coloplast held the event at House for an Art completed questionnaires on stoma issues. seeing you there. Lover in the grounds of Glasgow’s Interestingly our group seemed to have a | 24 HOUR HELPLINE: 0800 328 4257 TIDINGS | SUMMER 2017 | 15 FUNDRAISING WE NEED YOUR HELP

FFuundrnaisding Focus

I want to the parachute jump to raise as much money as I can for the Colostomy raising Association who receive no government funding. I found their website, blogs etc a God send when I hit some very very dark times.” Darren’s Dazzels You can support Darren by donating Parachute Jump through his just giving page at https:// www.justgiving.com/fundraising/Darren- Pote 2017 Raffle The last issue of Tidings contained two Winnie’s 5th Birthday books of tickets for the 2017 Colostomy Association annual raffle, and this year On Saturday April 8 Christine Burgin held a there’s an even greater chance to win! ‘5th Birthday’ for her Stoma ‘Winnie’. We’ve still got our fantastic first prize of The party took place in her local scout hut £2,500, second prize of £500, and four (Christine has been a scout for 38 years) chances of winning £250, but there are now and through a raffle, tombola, sales of cakes five chances to win £100 as well. What and coffee, Christine and her friends better way to start the new year than managed to raise an amazing £1,324 ! spending your winnings in the sales or on a last–minute holiday! Tickets are £1 and all money raised from the Thank you raffle will go towards supporting vital Colostomy Association services such as Yet again our supporters, their friends, and Darren Pote is jumping out of an airplane our 24–hour helpline, free literature and family members have been busy raising for the Colostomy Association ! Tidings magazine. funds for the Colostomy Association . As In his own words Darren has chosen to always we are hugely grateful and humbled We’ve had a brilliant response so far, and if raise funds in this way because “On the by the efforts of so many people who help you haven’t returned your tickets yet there’s 13 July 2016 (my 43rd birthday) I was financially support our various services. still plenty of time to do so. rushed back into A&E with severe stomach The Gateshead Stoma Support group All completed stubs need to be in by Friday pain and PR bleeding, I was losing so much raised £373.81 for Stoma Aid through raffles 15 December and the winners will be blood. and refreshment donations. notified by email, phone or post and I had a sigmod diverticulitis perforation and announced in the spring 2018 edition of Mooray Ostomates donated £300 as a required immediate surgery. After the op Tidings . result of their fundraising activities. which took 14 hours, was a living nightmare Please note there is a printing error on the as I got sepsis and pneumonia. I was cut The Church of Scotland Guild Irvine and stub of the tickets. The date of the draw is from the chest to the private area (43 Kilmarnock Presbyterial Council donated stated as taking place in 2016 rather than stitches) I’ve had so many complications, £50 to the Colostomy Association . 2017. The draw date is correct on the ticket my wound had to be opened in three Salts healthcare raised £86 after they portion that the purchaser keeps. The places to drain the infection, several donated £1 for every response they fundraising regulator and the Gambling months under tissue viability. It’s only now Commission have both confirmed that eight months later it’s healing. these tickets are valid for sale.

16 | TIDINGS | SUMMER 2017 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK FUNDRAISING WE NEED YOUR HELP

The amount you donate will be added to your mobile phone bill or deducted from your pay as you go credit. JustTextGiving will send you a link in a text message confirming your donation Unity Lottery Leave a Legacy

received from a recent survey they conducted with healthcare professionals. It’s now been over a year since the Unity Lottery replaced our 500 Club and we are Judi and Brian O’Connor collected £160 on glad to say that not only is its popularity their Golden wedding anniversary through growing with supporters on a weekly basis, asking friends and family for donations to Giving in your will is a truly special way to they are also winning regularly as well! the Colostomy Association rather than make a lasting difference. It will help ostomates of tomorrow, their family giving presents. Members have the chance of winning a members and carers, receive life–changing main prize of £25,000 each week (plus a Hilary Tristram donated £325 which was support from the Colostomy Association . £2,500 donation to the Colostomy received for donations from friends and Association ), as well as smaller prizes of family at her ‘un–birthday’ lunch. What your gift means £5, £25, and £1,000. Entry is only £1 per The Stoma Care department at Colchester week and we receive 50p for every £1 ticket Legacies large and small can have an University Hospital collected £40 from sold. You can join by completing the form extraordinary impact for all the people we their Christmas Support group meeting. on page 49 or online by visiting help and support. They can: www.unitylottery.co.uk but remember to The Kay Park Parish Church Guild donated ● Ensure there is always a voice at the link to our Charity. £50 . other end of the phone. Grants and Trusts ● Train volunteers to provide support at open days and in hospitals. Are you an Active The Colostomy Association is grateful to ● Fund our campaign for a stoma friendly the following trusts and foundations who Ostomate? society. have recently agreed to support our work through contributions to our core costs and ● Make sure the ostomates of tomorrow various projects: receive the same support from us that you have. The Lynn Foundation, The Constance Travis Charitable Trust, The Cardy Beaver Foundation, How to leave a legacy and the Sir James Roll Charitable Trust. A solicitor can help you to write a will or, if you already have a will, a codicil. Your Textgiving legacy could be used wherever it is most You can now make a donation to the needed or you can choose to support a Colostomy Association with a text specific area. message! Your solicitor will need the following Whatever mobile network you’re on, simply information on our charity: The Colostomy Association is looking for text our unique code CASS01 and an ostomates and non ostomates who are Name : Colostomy Association amount of £4, £5 or £10 to 70070. interested in representing the charity in Registered address : Enterprise House, various sporting events in the near future. It Donating via text is free. There is no cost to 95 London Street, Reading RG1 4QA could be as individuals or as a team. you for sending the text message and your Whatever activity you enjoy be it running, free allowance or bundle will not be Charity Commission registration cycling, bowls, walking, swimming, tennis affected – the only charge will be the number : 1113471 or football, we’d love to hear from you! donation itself. After you have provided for your loved For further information or to register What’s more 100% of your text donation ones we hope you will consider a gift to your interest please contact our (including Gift Aid) will be sent to the our Charity. development officer Giovanni Cinque at Colostomy Association . Giovanni.cinque@colostomyassociation. org.uk

| 24 HOUR HELPLINE: 0800 328 4257 TIDINGS | SUMMER 2017 | 17 LIVING WITH A STOMA IRRIGATION

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 Association head office. Sarah Squire Irrigation : Past and Present In this 50th Anniversary year of the Colostomy Association , I started to look into how long colostomy irrigation had been practiced and I have to say I’m surprised how far back it took me. I thought it was a fairly modern approach to colostomy management but in Irrigation is a method of colostomy 1934, in the British Journal of Surgery, Tilson Dinnick management which involves gave an account of a child born in 1793 with an using specialist equipment to introduce warm water into the imperforste anus. A surgeon named Duret formed a bowel via the stoma. The water stoma and four days post op ordered a ‘washing out’ causes muscular contractions with water and syrup of rhubarb! Other authors give (peristalsis) within the bowel which in turn cause expulsion of credit to Pillore and Fine who suggested the use of its contents. irrigation as a way of managing a stoma sometime in Many Ostomates prefer this the 18th century. method of colostomy management as it gives them a In 1927 J P Lockhart–Mummery revisited cone we use today, that irrigation became sense of control. If you feel you irrigation in his publications and its more widely used. would like to try irrigation you popularity did increase for a while, although should first contact your stoma some negative results influenced success. I am always delighted to receive emails and In the 1940s an American music teacher, letters from our readers about their nurse to see if you are a suitable Sophia M Secor, became an important irrigation experiences and would love to candidate. If you get the go spokesperson for the irrigation method. She hear from people who have been long term ahead they will then arrange a irrigators. What were the early kits like? How wrote about the difficulties she time to teach you. For more encountered while learning to deal with her much training did you receive? I feel very colostomy, and how she became a fortunate to be an ostomate in modern information see the Colostomy colostomy counsellor at Beth David times as the variety of products and choices Association website or purchase Hospital in New York. It wasn’t until the we have to allow us to manage our stoma the Irrigation and you DVD using 1950s when specialist equipment was comfortably and confidently mean we can the form on the right. introduced, including early versions of the get on with enjoying life. 18 | TIDINGS | SUMMER 2017 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK LIVING WITH A STOMA IRRIGATION

Colostomy Association has always been Sue began irrigating just six weeks after patients and wondered if part of the reason very committed to promoting irrigation and her colostomy operation in 1998 after was time constraints and lack of confidence credit for this must go to Sue Hatton . When being encouraged and taught by ward in teaching the procedure among stoma MacMillan withdrew funding from the sister, Ann Leppington Clarke. Irrigation nurses. At conferences and meetings with British Colostomy Association, Sue was became Sue’s ‘soapbox’ subject as she health professionals Sue asked questions among the eight volunteers who stepped was determined to spread the word about and it became clear there was some truth forward to ensure that support for this liberating way of managing a in her assumptions. She had the idea of ostomates would continue. When the new colostomy. Sue would promote irrigation producing a DVD to highlight the benefits Colostomy Association became a whenever it was appropriate. She was of irrigation for patients but to also include self –funding charity she was elected Chair among the first Colostomy Association a toolkit to support best practice of how to of Trustees. volunteers to man the 24 –hour helpline teach the technique to patients. so would often ask callers if they had Two DVDs were produced, one an considered irrigation if she felt it would fit educational tool for health professionals their lifestyle. In 2006 Sue suggested an and patients, raising awareness of eight–page supplement on irrigation be irrigation and another which is more featured in Tidings . This appeared in the clinically based to increase confidence in Winter 2007 edition and was later the teaching of irrigation. Both DVDs reproduced as an information leaflet. In feature Colostomy Association Trustee, 2009 Sue began writing the regular Judy Colston, irrigating plus other patients irrigation page in Tidings and continued and nurses discussing the advantages of until 2014 when she passed the baton on this method of colostomy management. to me as she needed surgery to form an We tried very hard to include hints and tips ileostomy. which would help irrigators, new and old, master the technique in order to make it I feel very privileged to have taken over the work best for them. Tidings Irrigation page from Sue, and was delighted to be involved in the production Sue, you did us proud. The DVDs are of the Colostomy Association ‘Irrigation brilliant and will continue to help make and You’ DVD, also the brainchild of this irrigation more widely promoted, to provide special lady. Sue had long wondered why suitable colostomates with this choice of

Sue Hatton irrigation wasn’t more widely offered to stoma management. ■ D

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

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

To obtain your single copy of Colostomy Irrigation and You at the special price of £4.99 (incl o y

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postage and packing) simply fill in your details below and return it with your cheque made n a h t

payable to the CA Ltd, to: -

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

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s s e r d d a

Title: e h t

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Email: P Please allow 30 days for delivery.

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

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CALENDAR WINNER 2nd

Get your Colostomy Association 2018 Calendar The calendar competition results are in… so prepare for your virtual holiday!

Ever sat there on a cold miserable day Our calendar competition received a total of our new calendar are more than just visually and wished you were somewhere else? If 96 entries and, just like last year, the stunning. They are also tangible evidence of so, then our 2018 Calendar is just the standard was so high that it caused our ostomates living full and active lives. ticket. Spiral bound and measuring judging panel a few headaches. Every single The calendar costs £9.50 including postage 210mm x 420mm, each month opens to photograph was taken by one of our and packing. All proceeds will help support reveal a stunning photograph which, with supporters. Mr Kevin Young was the eventual the various services we offer including our a little imagination, will see you jetting winner with his photograph of a sunset near 24/7 Helpline, our extensive range of free off to faraway places. We have everything Stromness, Orkney, Scotland. Second and booklets and, of course, Tidings . So don’t covered, from cityscapes to sunsets in third place went to Mr Trevor Andrews delay ordering. What’s more, every calendar tobacco coloured skies. There is also and Mrs Phyllis Oliver respectively, with comes in its own white presentation plenty of space to record appointments photographs of Castillo de Casares, Málaga, envelope, making it an ideal gift for and even, perhaps, the date of your ‘real’ Spain and Yardenit Baptismal Site along Christmas! holiday. River Jordon, Galilee, Israel. They say that a picture is worth a thousand words. We Calendars can be ordered using the form couldn’t agree more. Those that make up below or via our online shop.

3rd 1st ✁ Quantity

Please send me Colostomy Association 2018 calendar /s at the cost of £9.50 each (price inclusive of VAT & p+p). Please allow 28 days for delivery.

I enclose a cheque for £ made payable to: CA Commercial Ltd .

Title:

Name:

Address:

Postcode:

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Colostomy Association , Enterprise House, 95 London Street, Reading RG1 4QA | 24 HOUR HELPLINE: 0800 328 4257 TIDINGS | SUMMER 2017 | 21 REAL LIVES operation but I could also see an end to my 15 years of suffering. I am really lucky to have found a good combination of products right from the start so I have never had a single leak. I get an allergic reaction to certain adhesives – even 1 A PRIL 2 017 regular sticking plasters can cause problems – so during the first couple of months I ordered samples from all the main manufacturers. I cut a 1" square from each of the flanges and labelled them up. I stuck them to the opposite side of my abdomen (so as not too aggravate my stoma site) then left them overnight. This was a safe way to test how well my skin reacted to the adhesive. My road to recovery had begun along with a new freedom to enjoy my life. I was able to go out for meals, to concerts and to play golf fairly regularly without any worries. I have changed my pouch many times while out and about in supermarket toilets and even in the car when really necessary. Healthwise, I still suffer from an upset stomach from time to time but due to my stoma it’s not a big problem anymore. I Smile, sleep soundly every night whereas before my op I would spend many hours sat on you’re the loo doubled up in agony. The only slight problem I have now is trying to maintain a healthy weight as I am eating better than ever. wınners! When I saw my consultant about eight The m ost a stonishing p ictures, i ncluding months after my surgery I was prepared for this m agical s hot o f t wo y oung s toats, an argument. I thought he would insist on from o ur w ildlife ph otogr aph y c ontest a reversal as I realise how much my supplies cost the NHS. Considering that I am relatively young I assumed that they This photograph was the overall winner wouldn’t want me to keep my stoma due of the Daily Mail Weekend magazine’s to the ongoing cost. annual wildlife photography competition. The head judge, David Suchet said: “I like I couldn’t have been more wrong. The everything about this – the colours, the consultant initially explained that the texture, the way it all blends together. For reversal operation is another major me it’s not only the beauty of the two ‘Focusing’ operation with no guarantee of success. young stoats but of their natural I told him that I wasn’t interested anyway environment.” as my quality of life had improved immeasurably. He was delighted to hear The photograph was taken by Rob Fearn that and said: “OK, I will write to your GP whose story featured on page 11 in the on a and tell her that ‘we’ have decided that your Spring 2014 issue of Tidings . Rob had stoma will be permanent.” He reassured me suffered from bowel problems for 15 years. that as I’d had a Hartmann’s procedure my His life revolved around knowing where to remaining ‘plumbing’ is still mainly intact find the next toilet. This posed quite a better life and, should I have a change of heart in the problem as he worked as a sales coming years, a reversal would still be representative and spent his working life on possible. I asked if there was a time limit on the road. It also made it difficult for him to this, to which he replied no. pursue his hobby of wildlife photography. Tests for ulcerative colitis and Crohn’s disease Having a stoma means I am not tied to the proved negative and Rob was told he had Rob takes up the story nearest loo and I can get out and walk for IBS. Then in October 2013, when he was 43, miles and enjoy the countryside. My wife, his colon perforated due to diverticulitis. I didn’t have a clue what a stoma was. I had Helen, and I both have fairly stressful When he woke up from emergency surgery heard of a colostomy but I assumed that customer–facing careers so it’s great to be to find he had a stoma, instead of being was just something that old people had. As able to get away from it all at the weekends devastated, he realised immediately that it soon as it all sank in, however, I was over and on holidays. This freedom has helped would change his life for the better. the moon. Not only had I survived the me to develop my hobby. 22 | TIDINGS | SUMMER 2017 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK REAL LIVES woods on the Slovakian mountains. I couldn’t have even considered doing any part of this prior to the operation, but now I cannot wait. My photograph, two stoats on a woodpile, was on the cover of the Daily Mail Weekend magazine on 1 April. All the winning photographs were displayed at a free exhibition in the Strand Gallery in London for the week beginning 8 May. We were invited to the launch party. The head judge, David Suchet, gave a very complimentary speech about my winning photograph. He is very passionate about photography as his grandad, Jimmy Jarché, was one of the original Fleet Street photographers.

We enjoy ed the evening chatting with a Rob’s photograph of the sun setting behind the w a r memorial at Tyne Cot cemetery in Belgium selected for the couple of the other judges, several I have always enjoyed photography but due month of November in the Colostomy Association 2017 journalists and editors from the Daily Mail Calendar. to my illness before I had my stoma I was as well as many of the other photographers very restricted to where I could go; there’s who had entered the competition. only so much wildlife that you can The main prize is a four–day trip with a It was great to be able to go and enjoy the photograph in the back gard en! I can now p rofessional wildlife photographer to party without having to starve myself first or visit nature reserves and walk out in the Slovakia to photograph wild bears and wolves. I was absolutely delighted as I overdose on Im odium! countryside without any fears, or having to starve myself beforehand. know I am now able to go a nd enjoy The positive moral behind this story is that myself. If I had won this prize prior to my prior to my stoma none of this would have Last year we spent a week in Suffolk and operation I would have had to refuse it. been possible. I’m now free to take up really enjoyed visiting all the nature Getting there involves a three–hour flight ph otography seriously after being released reserves. On one particular day we visited and a five–hour tr ansfer from the airport. from my fifteen–year battle with IBS and Lackford Lakes Reserve, well known locally Once there I will spend up to eight hours a diverticular disease and a life that revolved for its kingfishers. W e sat for over five day in a photography hide in the middle of around locating the nearest loo. hours in the kingfisher hide and I got some the fantastic shots. On the way back to the car we came across two juvenile stoats p laying on a wood pile. They were pre–occupied, fighting over the remains of a dead bird, so didn’t appear to notice that we were there watching them for about 10 minutes. I managed to get a good selection of photos. In October 2016, the Daily Mail Weekend magazine held their national wildlife photography competition and a friend suggested that I should enter. I sent in one of my stoat shots then forgot all about it. In February this year I was surprised to receive a call to say that, out of more than 10,000 entries, my stoat photograph had been selected as the winner in the mammal category. The prize was camera equipment worth £1,000. All five category winners then went through to be judged for the overall prize which, to my amazement, I also won. Rob and Helen with David Suchet at the Strand Gallery exhibition | 24 HOUR HELPLINE: 0800 328 4257 TIDINGS | SUMMER 2017 | 23 FROM HEALTH PROFESSIONALS

Diverticular disease and Diverticulitis

Alison Horner RGN, BSc(Hons) Nursing, Independent Nurse Prescriber Alison began her nursing career at St Mark’s Hospital in London and later moved on to work in colo–rectal operating theatres. In 2013 she was diagnosed with diverticular disease and the following year developed complicated diverticulitis and required emergency surgery to form a stoma. We published her story in the spring 2016 issue of Tidings. Since then Alison has had her stoma reversed and is now back at work as an Advanced Nurse Practitioner in a GP surgery.

When people ask me why I needed Who gets diverticulosis? opened. Some people develop diarrhoea or emergency bowel surgery, I tell them it constipation, and occasionally mucus is was due to diverticulitis and they usually ● Approximately 50% of all people have passed with the stool. look puzzled and ask, “What’s that?” This diverticula by the time they are 50 years Diverticulitis causes constant pain in the article will describe diverticular disease, of age, and nearly 70% of all people have abdomen, often felt in the lower left side, explain when it becomes diverticulitis diverticula by the time they are 80 years nausea and vomiting, fever, constipation or and consider the management and of age. possible outcomes. diarrhoea, possibly blood in the stool. ● Approximately 75% of people with Careful examination by a doctor will detect A diverticulum occurs when the inner lining diverticula have asymptomatic of the bowel is squeezed out through the if complications may be present and diverticulosis; of the 25% of people with hospital admission is required. muscle wall which surrounds the outside of diverticula who develop symptomatic the bowel. Diverticula can be present in diverticular disease, approximately 75% It is not clear why one person develops small or great numbers. Although they can will have at least one episode of diverticulitis and another does not. Indeed, be present throughout the small and diverticulitis. (NICE 2013) why diverticulitis occurs is not fully known; large bowel, they mainly affect the there is talk of a bacterial infection occurring descending and sigmoid colon. Often their ● Diverticular disease is rare in people due to obstruction or food becoming discovery can be an incidental finding when younger than 40 years. Disease is more trapped in a diverticulum, but it is not fully being investigated for something else i.e. virulent in young patients, with a high risk understood. My personal opinion is that colon cancer or irritable bowel syndrome of recurrences or complications. there is a coming together of events and (IBS); this is often by sigmoidoscopy or environment, as yet unknown, that causes colonoscopy, but can be by other ● The prevalence is similar in men and women. the climate within the gut to change and investigative tests. infection to develop. Overall, those of us who end up having There is debate about what causes these Symptoms may be chronic i.e. they occur small pouches or sacs. Leading opinion is surgery are still in the minority. One of my surgeon colleagues said to me: “You were on repeated occasions over time, or acute that the cause is constipation and a low i.e. they develop into something more just very unlucky.” fibre diet, which is thought to increase the serious much sooner. pressure inside the colon. The truth is that we don’t really know for sure, and the Symptoms evidence is limited. It is likely that in Diagnosis practice doctors have seen this scenario in It is not uncommon for people with Diagnosis of diverticular disease and acute many patients, but it is by no means the diverticula to have no symptoms at all. case for everyone. Personally, I never had a diverticulitis is made on the basis of a day of constipation in my life, my life was The symptoms of diverticular disease are detailed symptom history and physical ruled by diarrhoea from my IBS, but mostly intermittent, often cramp–like, left lower examination, including a family history due to the high fibre diet I ate to avoid abdominal pain, sometimes bloating, and (both my parents had surgery for diverticular disease! the pain can be eased by having the bowels diverticulitis). What is found will direct the 24 | TIDINGS | SUMMER 2017 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK FROM HEALTH PROFESSIONALS next stage of the investigation. Blood tests can be done to check for signs of infection Definitions and inflammation, as well as anaemia. ● Diverticulosis – diverticula are present without symptoms. Ruling out other causes of abdominal pain ● Diverticular disease – diverticula cause intermittent lower abdominal pain without is as important as trying to identify the inflammation and infection. cause. A urine culture should be done, especially where a fistula may be ● Diverticulitis – diverticula become inflamed and infected causing marked lower suspected. A pregnancy test will be carried abdominal pain usually accompanied by fever and general malaise. Occasionally it out in women of childbearing age. In an may be accompanied by large rectal bleeds. acute event, CT scan is used and also ● Complicated diverticulitis – diverticulitis accompanied by formation of an abscess, abdominal X –ray. perforation or fistula. (NICE 2013) Reference Management National Institute for Health and Care Excellence (2013) The management of diverticular disease is Clinical Knowledge Summaries: Diverticular disease decided by the symptom history and results https://cks.nice.org.uk/diverticular-disease of investigative tests. For those patients experiencing episodes of abdominal pain made once recovery is apparent, which is Discussion with the surgeon about whether with no fever or signs of infection, it is usually within 48–72 hours. Regular pain an open (laparotomy) approach or whether important to maintain a good fluid intake relief with paracetamol would be indicated. a laparoscopic approach (keyhole) can be and an appropriate diet. used, will take place. Where possible, the If management at home is not working keyhole approach is favoured due to What is an appropriate diet? One that then admission to hospital would be reduced wound pain, infection and a includes enough fibre so that stools are soft appropriate. Whilst there, intravenous speedier recovery post–operatively. The and formed. There is much debate about antibiotics and pain killers can be given, goal would be to perform a resection and seeds, nuts and popcorn causing problems, plus scans and X–rays can be undertaken. re–join the bowel with no need for a stoma. but there is no robust evidence to support Patient’s blood pressure, pulse, this and lots of anecdotal evidence to the temperature, pain levels and bowel Not everyone having surgery for contrary! Fibre from a variety of sources movements are all monitored and blood diverticulitis ends up with a stoma, it is should be taken, but any foods that cause tests carried out. If this conservative usually only those patients who have problems avoided. Fibre supplements i.e. approach to treatment is successful and the developed complications. ispaghula husk can be taken. patient improves then they will be Patients with complications such as a discharged home with advice on diet and It may take a while for you to find what perforated abscess, bowel obstruction, oral antibiotics (tablets). works best for you; the goal is to avoid peritonitis, overwhelming sepsis and failure constipation and straining, but also to improve with conservative management diarrhoea and urgency! A good fluid intake Surgery would require emergency surgery. This is can be gauged by the colour of your urine: done via a laparotomy and a Hartmann’s pale yellow indicates you are drinking The need for surgery is decided upon on an procedure is performed whereby the enough, dark, orange and concentrated individual basis, with discussion between diseased colon is removed, the lower end means you need to drink more. the surgeon and patient. An evaluation of (rectum) is closed, and the other end the number and severity of episodes, the brought up through the abdominal wall to During an episode of acute diverticulitis, presence of any complications, any pre– form a stoma (colostomy). where abdominal pain and fever are existing health problems, the patient’s age present, antibiotics, which will cover a Having a Hartmann’s procedure for and the impact of the disease all need to variety of bacteria, are usually prescribed. diverticulitis is considered a cure, even if be evaluated, along with the risk of major Resting the bowel by taking only clear fluids diverticula are still present in other parts of abdominal surgery. is recommended and providing symptoms the bowel. This is because problems with do not worsen most people can be Ideally, all surgery should be carried out these remaining diverticula is very rare and managed at home. Introduction of soft electively, and generally no sooner than the most vulnerable area has been foods and then a low residue diet can be four to six weeks after an acute episode. removed.

descending colon Reversal of Hartmann’s is an option for transverse colon some patients, and my own surgeon told me that approximately 30% of those who had a Hartmann’s procedure would be reversed. Reversal is no mean undertaking– it is technically challenging for the surgeon and more major surgery for the patient, with a chance of a temporary ileostomy until the join in the bowel is well healed. An ascending colon in–depth talk with the surgeon is vital, as well as a full assessment of the bowel, prior rectum sigmoid colon to any decisions being made. diverticula In summary, diverticular disease is very common, but on balance it is a relatively Normal colon Colon with several diverticula small number of patients who end up with complications and a colostomy. ■ | 24 HOUR HELPLINE: 0800 328 4257 TIDINGS | SUMMER 2017 | 25 REAL LIVES I’ve learned to cope with unexpected situations and ‘keep calm and carry on’. After a few incidents, you learn to anticipate these and are prepared. For example, when I was a novice ostomate the doctor wanted to have a look at my stoma; I hadn’t Pathway to a thought to take a spare bag with me to the appointment so he couldn’t! Wherever you go always take spares not just bags but also any additional products you regularly use. Colostomy: Early issues I had to deal with were skin sensitivity which caused a rash. I tried samples of different bags and then chose the best one for me. Because I swim, I needed a very reliable pouch which would Diverticulitis stay stuck. My stoma nurse was very caring and helpful and suggested flange extenders for extra security while in the water. I built up my strength by taking regular short For ten years, I was told that I had Irritable walks every day and I was back in the pool Bowel Syndrome (IBS) and prescribed three weeks after my operation. Sometimes peppermint capsules. The bloating, wind I find that the stoma carries on working and irregular bowel movements whilst I’m exercising and I worry that continued and I developed painful spasms someone will notice a bump beneath my in my lower tummy. At A&E an X–ray swimming costume. My ever–helpful stoma showed massive constipation and I was nurse and husband suggested wearing a advised to continue with the laxatives. patterned swimsuit or one with a frill or Then I saw a GP, new to the practice, who wrap effect. As my pool is on the cool side arranged blood tests and an ultrasound I often wear a rash vest. scan. When they provided no answers, she referred me to the colorectal department In April 2016, three months after my at the hospital. The first colonoscopy had operation, we went on a two–day break to to be abandoned because it was too Chester to celebrate our wedding painful so I was given a CT scan. It showed anniversary and I managed quite well. I a severe narrowing of the sigmoid colon made my husband stop part way there to caused by diverticular disease. check, yet again, that I had all my stoma products. We had to take all the cases out In January 2016 I was admitted to hospital Lorraine and her stoma nurse at the awareness day of the boot, check, then reload! I’d already for a laparoscopic sigmoid colectomy as the bowel had narrowed to a severe degree and I soon learnt to care for wasn’t functioning very well. By now, as well my stoma myself so I could bloating and severe spasms of pain, I was go home. I can honestly also experiencing frequent bouts of say I accepted my stoma diarrhoea so spent increasing amounts of immediately which amazed me time tied to the bathroom and was feeling as I really hadn’t wanted one to very low. be necessary. For the first four weeks, the stoma nurse came Prior to the operation, the stoma nurse to see me and after that I could visited me to mark my tummy. At this stage, visit her in clinic. As you it didn’t really impact on me that I would probably know, the size of a have a stoma. I was focusing more on stoma changes in the weeks getting prepared for the operation. It was following the procedure so she enough to concentrate on as the bowel checks in case it is necessary to prep was not a pleasant experience! alter the aperture in the pouch. When I came round in the recovery room, Mine was 35mm after the even though I was still drowsy, the first operation but shrank to 30mm thing I asked was: “Is it a stoma?” The nurse and has remained that size. said it was, but I was so relieved it was all At home I got myself a routine over I didn’t think too much about it. It was for cleaning my stoma, several hours before I peeped beneath the preparing my skin and blanket to have my first curious look at my applying the bag. You do get stoma. Not having been shown any pictures quicker but it isn’t a race and beforehand, I didn’t know what to expect. even now I take my time to First impressions were that it seemed large check I’ve done it properly and very pink. as I dread leaks or accidents. It took two or three days to start working but I’ve had one or two near I had no problems or pain. The stoma nurse misses but thankfully nothing Lorraine and her husband celebrating their wedding anniversary on came to examine me and change the bag. disastrous. a mini break in Cheshire 26 | TIDINGS | SUMMER 2017 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK REAL LIVES

Medical Terms Explained Laparoscopic surgery : A procedure carried out using an instrument called a laparoscope, which allows the surgeon to access the inside of the abdomen without having to make a large incision. Also known as keyhole or minimally invasive surgery. Sigmoid colectomy : The removal of the sigmoid colon, the terminal section of the large intestine that connects the descending colon to the rectum.

checked I had everything but this was my first time away from home and I needed to be sure. We then went on four other short breaks and I grew more confident about travelling. Later that year, my stoma nurse invited me to a stoma awareness day. This was Back swimming again worthwhile as I talked to some interesting and they haven’t recurred. I began wearing people and we shared our experiences. I nurse. I’ve found exercises to do daily to spoke to company reps about problems a seal soon after that as I had some leakage help strengthen my tummy muscles to and was able to order samples to try out at and this has helped with both issues. prevent the condition worsening. I wish, however, I’d known about the exercises and home. I would recommend these sort of I feel content with having my stoma. I’m stoma support wear earlier as I may have events as they are informative and social. fortunate to be the age I am and not a avoided getting a hernia. I’ve learned by trial and error but my younger person. I am so grateful to be free husband has been good at going on of the awful symptoms I used to suffer and It is wonderful to be able to eat normally websites for information so that too is appreciate all I can do now that I couldn’t again. Last Christmas was the first time in useful. I wish, however, that I’d had a copy do before. Now I’m in a routine I can plan years that I could join in and eat a variety of of Tidings at the time of surgery as I would to do things rather than be tied to the foods. I felt a hundred times better than the have learned a lot from the articles and bathroom for much of the day! I can’t be year before; I got to see people and do stuff reading about other people’s experiences. complacent though as I have developed a instead of occupying the bathroom for most In a recent edition of Tidings there was a parastomal hernia. of the day with only the radio for company. feature on granulomas. It was about two Sometimes you hear about people who months after surgery when I developed two Now that I have a hernia, my original stoma have done truly marvellous feats such as tiny raised areas around my stoma; they bag does not fit as well as it did, so my marathons, sky jumps, etc. But we have all bled each time I changed my bag. I had no stoma nurse helped me to find me one that achieved so much already just to have idea what they were. I saw my stoma nurse suits me better. I’ve also begun wearing a come through and accept our stoma. and she told me they were granulomas and support belt when I’m doing jobs and going treated them with silver nitrate. This worked for walks as recommended by my stoma Lorraine CA NEWS FROM THE OFFICE

Saturday 7 October 2017 Colostomy Day is our opportunity to raise awareness, challenge perceptions and show the world what it Whether it be a colostomy, Ileostomy actually means to live with a stoma. Whether it was because of cancer, Crohn’s, ulcerative colitis, or trauma or urostomy, the fact is stoma surgery to the bowel, we need to tell people that stoma surgery saves and improves lives. People with made the difference. stomas work, play, have children, raise families and run marathons, but still Join us on Saturday 7 October for Colostomy Day – our national awareness day – where super stomas there is a stigma attached to having are the theme. It’s time to celebrate and tell the world one. We need to change this. just how great they are!

28 | TIDINGS | SUMMER 2017 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK CA NEWS FROM THE OFFICE

Abi’s #superstoma After living a fit and healthy life, eating well and attending the I had this time to go gym regularly, it came as a huge shock to be diagnosed with through the emotions: advanced rectal cancer just two months before I was 40. During sadness, anxiety and those first discussions about my tumour and the treatment worry. The surgery was recommended before surgery, wearing a bag was mentioned performed in August 2016, and I must admit I had absolutely no idea what they meant. thankfully successful and I was very I had simply never been aware of stomas prior to this. surprised how small and tidy my stoma was when I saw it for the It was not something I focused on during those first few first time (two days later). I had months to be honest, I dealt with everything just one step at a been so worried about dealing with it, time – four cycles of chemo, a brief break before the five week but it was actually very straight forward and radiotherapy course started. Some of the side effects were the nurses were so helpful. awful, including the sense of urgency and having accidents whilst travelling. At the planning stage for radiotherapy it was The recovery period, particularly fatigue was tough going but made clear my colostomy would highly likely be a permanent the bag changes were the easiest part. Now approaching nine one with no room for reversal. I felt emotional and worried, months from the operation, I’ve been trained to irrigate and but again I didn't dwell on this or what it might mean until I really enjoy the confidence this gives me when I’m out. I’m back in the gym doing cardio and weight training, wearing had my visit with the stoma nurses prior to surgery. This was support underwear and definitely feeling more like myself when it really hit home. again. No one would know I have a bag unless I choose to tell I've come to realise a lot of people end up with a stoma due to them, and in comparison to the symptoms and difficulties I emergency or because of a chronic condition, whereas I had faced pre –op I am much happier now. I’ll be wearing my bikini plenty of time to process what was to come; personally I’m glad with pride this year that’s for sure!

There are many ways you can get involved in Colostomy Day. Social Media

We want to get #superstoma trending. So please share your #superstoma on Twitter, Facebook and Instagram. You could post a picture like the one here or, if you don’t fancy showing your bag, then just do a ‘thumbs up’ where the bag would be. And don’t forget to involve your family and friends. They can do a clothed ‘thumbs up’ too.

Share your story

Celebrate your stoma and how it saved your life. We will be featuring stories across our website and social media. Alternatively, why not let the local paper know or perhaps turn your story into a blog. Let’s raise awareness of the different issues that lead to stoma surgery and let the world know that anybody, regardless of age or background can have a stoma.

Become a Superhero

And do a run, swim or bike ride. Maybe instead, you could hold a superhero themed bake sale or just do good deeds for the day? If you are planning on holding an event or taking part in an activity, then let us know. We can spread the word and also send you one of our Colostomy Day t–shirts. Together we can raise awareness.

For more information, visit our website or email [email protected] for a Colostomy Day pack

Huge thanks to the wonderful people that took part in our photoshoot. Sarah Squire, Ian Jackson, Jackie Dudley, Shell Lawes and Abi Brown. You can find out more about their super stoma stories in the run up to Colostomy Day.

| 24 HOUR HELPLINE: 0800 328 4257 TIDINGS | SUMMER 2017 | 29 THE CHEAPEST NON-MOULDABLE SEALS ON THE MARKET *

SecuPlast ® Aloe Rings of fer complete confi dence in helping to THE BENEFITS OF ALOE VERA pr event leaks with a range of featur es that make them gentler UÊÊ/ iÊw ÊÀÃÌÊ>˜`ʜ˜ÞÊÀˆ˜}Ãʈ˜vÕÃi`ÊÜˆÌ ÊiÝÌÀ>VÌÃʜvÊ
œiÊ6 iÀ>ÊqÊ on peristomal skin. to help soothe, moisturise and pr otect the peristomal skin UÊ-Ê Žˆ˜‡vÀˆi˜`Þ ]ʵՈVŽÊ>˜`Êi>ÃÞÊ̜Ê>««Þ UÊ Ê œÊ˜ii`ÊvœÀÊ>˜Þʈ˜ˆÌˆ>ÊÜ>À “ˆ˜}ʜÀʓœÕ`ˆ˜} FLEXIBLE, FOR A MORE COMFORTABLE FIT UÊÊ iÈ}˜i`ÊvœÀÊi>ÃÞÊÀ i“œÛ>ÊÜˆÌ œÕÌÊVœ“«À œ“ˆÃˆ˜}ÊΈ˜Êˆ˜Ìi}ÀˆÌÞ UÊÊ/ ˆ˜]Êy Êi݈LiÊ>˜`ÊV>˜ÊLiÊÃÌÀ iÌV i`Ê̜ UÊ-Ê ÌˆVŽÊ̜ÊÌ iÊÜ>viÀʜvÊÌ iÊ«œÕV ]ʓ>Žˆ˜}ÊiÛiÀÞÊV >˜}iÊi>ÃÞÊ accommodate moderately oval stomas and mor e comfortable UÊ,Ê iÌ>ˆ˜ÊÌ iˆÀÊà >«iÊvœÀÊ>ÊÃiVÕÀ i] comfortable fi t STRONG , GENTLE AND SK IN-FRIENDLY UÊÊ*À œÛˆ`iÊ>Ê`ˆÃVÀ iiÌʏœÜÊ«À œw ʏi]ÊÜ ˆiʜv viÀˆ˜} UÊ-Ê ÌˆVŽÊÃÌÀ œ˜}ÞÊvœÀÊ>ÊÃiVÕÀ iÊw ÊÌÊqÊLÕÌÊܜ˜ ½Ìʏi>ÛiÊ>˜ÞÊÀ iÈ`ÕiÊ complete confi dence in helping to pr event leaks on r emoval UÊ-Ê >ÌÃÊÀ iÃi>À V ʈ˜ÌœÊ Þ`À œVœœˆ`ÃʈÃÊÀ iVœ}˜ˆÃi`ÊLÞÊÌ iÊ ÀˆÌˆÃ KINDER TO NHS BUDG ETS TOO Skin Foundation and accr edited by the Skin Health Alliance UÊ/ iÊV i>«iÃÌʘœ˜‡“œÕ`>LiÊÃi>Ãʜ˜ÊÌ iʓ>ÀŽiÌI

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“I have tried other “I’ve found the perfect “It has been 100% “Leaks ar e now a pr oducts but nothing Aloe Ring pr oduct for me. successful in thing of the past! Befor e works as well as this one. It’ s pr otecting me fr om using SecuPlast ® Aloe Rings, No leaks, no sor e r ed skin. “It gives me the nice and thin and adher es leakage.” leaks wer e quite common It gets on with the job of back-up and very well – also I can cut a small and annoying. Now , none pr otecting me, leaving me Ms J, W arwickshir e confi dence I need.” piece out of a ring and fi ll to get on with my life.” at all! Thank you.” any cr eases ar ound the stoma, Mrs S, W est Mr K, Devon giving me a fl at surface.” Mrs C, Cor nwall Yorkshir e Mrs B, Devon “I have tried other “It is easy to use companies’ rings and at and comfortable pr esent, this is by to wear .” far the best I have used “This pr oduct has Mr J, Hampshir e “V ery confi dent, in 20 years.” helped me in my day-to-day life immensely . It’ s given “No skin pr oblems, easy to apply , no sticky Mr J, W olverhampton “It’ s comfortable, me confi dence in wearing my no leaks – so it gives fi ngers and adhesion secur e and stoma pouch in everyday me total confi dence is gr eat. Thank you for doesn’ t af fect my skin. life, and I cannot put into which is so very , very a gr eat pr oduct.” Retains shape and wor ds how much this important.” Mr L, W est Midlands doesn’ t disintegrate.” pr oduct has helped me.” Mr J, Lancashir e Mrs S, Nottingham Mr M, Selby

*Data corr ect as of Mar ch 20 17

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REAL LIVES The diagnosis that changed our lives

Margaret writes about how she and her husband, George, have coped with cancer and a stoma.

George kayaking in North Wales

It started in the outpatient’s clinic at our was no way we could have deposited a poo George loves the sea. Years ago, he used to local hospital in 2009. I remember that bag in there. We solved our problem by go sub–aqua diving. Now that he has a sick feeling, shock and disbelief, when I taking it with us when we went out and stoma he thought he would try snorkelling. heard the surgeon confirm the diagnosis disposing of it in a dog –waste bin. Before This was during a long weekend break in that George, my husband, had rectal going away, I purchased a waterproof cover Connemara on the Wild Atlantic Way on the cancer and would need to have a for the bed just in case of any leaks. I do not west coast of Ireland. We stayed at a lovely permanent stoma. know if the landlady discovered it and, if country hotel but did not take a waterproof she did, what she made of it, but it made bed cover this time. George had never heard of a stoma. I us feel better. wanted to reassure him that it would be As the Atlantic is very cold, George needed alright, but everything seemed so We celebrated our silver wedding a wet suit. On each of the two days we uncertain at the time. The surgeon said anniversary; it was a very happy occasion, were there he did an hour session of George could not have surgery to get rid of with all our family around us for a church snorkelling, duck diving down to ten feet the tumour straight away. First there had service and a lovely meal at a hotel underwater. I must confess I was a bit to be a course of radiotherapy along with afterwards. We also attended our concerned, as the waves were a bit choppy a course of chemotherapy to shrink the grandson’s wedding, which was a lovely and he was on his own, except for me on tumour. Eventually George had surgery family celebration. At this time my husband the beach keeping an eye on him. He really and after this came another course of was experiencing some urine retention enjoyed it and there were no problems with chemotherapy to make sure all the cancer problems and had to have a leg bag, but it his stoma bag. did not stop him dancing. cells had gone. Well there was no stopping George now. Normal life and routine all changed, as the Next it was kayaking. We hired two sit–on– priority and focus was on treatment and top kayaks on the river Dee in Chester, to hospital appointments. George had six see how we got on. It was a bit outside my weeks of radiotherapy, and on a Friday comfort zone, but we both enjoyed the morning, we would go to a café at experience. George went on to buy a sit– Clatterbridge and celebrate getting through on kayak, and has taken it on rivers and another week, with a big plate of toast and Bala Lake. Last year while we were in tea; it was our toast party. Looking back, I North Wales he took it out to sea and got do not know how we came through it all. rolled over twice in the surf and still did not experience any problems with his When it was all over we just wanted to get stoma bag. back to a normal life as soon as possible. Could we still go swimming? What would They say to have lovely memories, you have happen if the bag leaked or came off? to create lovely experiences, I think we Could we go on holiday? We now know certainly did this together. Oh, did I forget the answers to these questions, but at that to say George has also climbed Mount time it was all undiscovered territory. The Snowdon even though he has arthritis in stoma nurse at our hospital was helpful, both knees and last year it was camping, and Tidings magazine is a mine of useful with a new blow–up tent! information. George, now six years in remission, says: “If For our first weekend away, we stayed in it wasn’t for the love, caring, understanding, bed and breakfast accommodation. The bin and encouragement of my wife, Margaret, in the carpeted bathroom was covered in I would not have had the willpower to carry floral fabric and trimmed with lace. There George going snorkelling in Connemara on and be where I am now.” ■ | 24 HOUR HELPLINE: 0800 328 4257 TIDINGS | SUMMER 2017 | 31 NEW PRODUCTS Update on stoma care products and services

Tidings is always interested to learn about new stoma care products and services from manufacturers and suppliers. If you have found a stoma care product or service beneficial to ‘living with a colostomy’ please let Tidings know. YOUR findings could make ALL the difference to others.

Ami/Suportx are proud to launch the new Breathable Easy Peel and Tube belts. The unique Cotton rich fabric provides firm support and is fully breathable. The belts are designed so the back is shaped for maximum comfort. A wide self–grip elastic ensures the belt stays in position. A wide range of sizes, depths and three colours are available.

For more information go to page 48

New! Hyperseal washers with medical ® grade Manuka honey – new sizes Aura Convex Colostomy now available!

Designed to support colostomates with poorly sited, recessed or retracted stomas, Aura Convex conforms to the body shape to provide a secure seal and gentle pressure helps the stoma to protrude into the bag to prevent leakage. The inclusion of medical grade Manuka honey in the Hyperflex ® hydrocolloid may help to promote Hyperseal with medical grade Manuka honey washers are ideal healthy skin around the for problematic stomas with crevices, fistulas or scar tissue. The stoma. unique Hyperflex ® hydrocolloid is completely mouldable against the body contours offering extra security and protection. Now available in three new sizes – 30mm, 40mm and 50mm. For a free sample call 0800 036 0100 For a free sample please call 0800 036 0100 or email [email protected] or email [email protected] www.clinimed.co.uk www.clinimed.co.uk See our main advert on page 20

PID: 4478 PID: 4483 32 | TIDINGS | SUMMER 2017 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK NEW PRODUCTS New Brava ® Skin Cleanser – developed for stoma care

Simple wipes that sooth and clean without affecting adhesion. They contain provitamin B5 which helps manage redness, irritated skin, and acts as a moisturiser to improve skin hydration. To learn more about how they can help your skin recover and to get a sample, visit www.coloplast.co.uk/tidings See our main advert on page 2

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| 24 HOUR HELPLINE: 0800 328 4257 TIDINGS | SUMMER 2017 | 33 LIVING WITH A STOMA Stoma and Sanity

I’ve never been one to reach out when I needed help. I have been living with poor mental health for the past 20 years (I’m now 40), rarely asking for help from my loved–ones. And then along came a stoma.

I must admit I’ve always felt a sense of As the treatment plan was explained I sat the take–home pack containing the fake some impending doom, like I knew that like a good pupil nodding at the right stoma, colostomy bag and gel crystals one day something bad would happen to moments and answering the questions from my new colorectal specialist nurse, me. Was it just my mental health, the being asked of me. I wasn’t that worried Lisa. Thank you. No problem. See you darkness of negativity translating into about the prospect of early menopause, soon. one of the worse scenarios I could chemo/radiotherapy or even the cancer imagine? Probably. So, it didn’t really itself. And then I heard a new word. That day the tears didn’t come. I had to come as a shock when, at a follow–up Stoma. Apparently, I would need one of explain to the rest of my close family and appointment, the colorectal surgeon, Mr these, hopefully temporary but quite likely friends that I had this cancer I’d never Krishna, explained that the growth in my permanent. As the word colostomy was really heard of. I felt guilty for putting rectum was cancer. Sitting next to me, my spoken, it started to dawn on me; I’d them through this. But where were my fiancé looked blank. My mum broke definitely heard that word before. I kept emotions? The years I had spent crying down immediately – even at 38 I was still nodding, smiling and making jokes as I and anxious for no apparent reason her baby. I found myself comforting her, usually do. But inside I was screaming. I belied this new calm me. It was cancer. I telling her things would be OK and we’d could feel the horror rising, a feeling of daren’t think about that horrible get through this. complete terror and hopelessness. I took ‘colostomy’ word. 34 | TIDINGS | SUMMER 2017 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK LIVING WITH A STOMA The next day I stuck on the little rubber ward I started to feel the impact of what decided I would cope with the big things in stoma I had been given. I added the crystals was going on. It was a dark time. I had life, not that Butt Face is big; he’s tiny and to the bag and felt them turn into sludge, a smile plastered on when I had visitors perfectly formed and I thank my lucky stars attached it to the stoma and cried. but as soon as the curtain was drawn for him every day. around my bed I sobbed myself silly. What Finally. Something I could really get upset Sometimes it all seems like a lot of trouble had I done? Why on earth had I gone about. I sat down and hated the feeling of the to get out of bed on a bad day for a bag through with this stupid surgery? It was bag. I was heartbroken. I tried to stand up change. I just tell myself to power through too late now, I should never have agreed and it felt as though this alien thing on my it. I might get angry and irritated that I have to it. stomach was going to explode as I bent to do it but never am I sad about having a double. Honestly, I wanted to die. I didn’t At home things weren’t much better. The stoma. I feel blessed and grateful to be part want to poo out of my belly – I would rather first bag change I did on my own was a of this amazing, awe–inspiring community take my chances with the cancer than have nightmare. I felt faint, cried and got poo all of ostomates, like I’m part of an elite group to deal with this thing of nightmares. One day down me. The second time was a little I would never have had access to otherwise. I opened up to my sister–in–law: would I ever better and thanks to my fiancé I made it I started filming an on–line vlog series to feel normal again? Ever positive? She told me through. The grief I felt for the part of my offer a positive view–point to new she knew I was going to cope, in fact she said body I’d lost was overwhelming, but, as colostomates, because I know not everyone I would ‘totally own it’. I just lightheartedly time went by, things slowly got better. is going to take to it as well as I have. Doing agreed and said she was probably right. it has helped my mental health so much I wish I could have told myself what I know Inside I wondered how she had the cheek to and made me even more joyful to be a part now: That life with a stoma is Great! I say that to me, it was my life being ruined of the gang. wouldn’t have believed my future self, I and she had no idea how it felt. I continued would have laughed in her face. But I’ve So thank you Butt Face, thank you to my on with my treatment plan, all the while grown to love my stoma, or Butt Face as I surgeon, Mr Krishna, and to Lisa, my stoma slowly and secretly giving up on life. named him (I didn’t want a sentimental nurse, for giving me a new lease of life. And I led a robotic life right up until after my name, so I opted for a humorous one). He’s thank you to the Colostomy Association for being there, allowing me be a part of surgery. Just before, I was told that there the reason I’m alive today and I can do something truly amazing. I’ll never look was no chance of a reversal, this was everything I did before he was born. back. going to be for life. Any hope of going Nothing phases me anymore. I just take it Joanna Phillips back to ‘normal’ was dashed on the rocks in my stride, and get great laughs when I of my tumultuous brain. I was in intensive share funny poo stories with my friends and care for five days after surgery, dosed up family. My mental health issues haven’t Got Stoma? Vlogostomy on on painkillers, not fully aware of my gone away, but my stoma isn’t one of the YouTube https://www.youtube.com/ surroundings. It was when I got onto the things that set me off. Somehow my brain channel/UCGG9J0wN9141mKalSHU4DMg

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| 24 H OU R H E L PLINE: 0 800 328 4257 TIDINGS | SUMMER 201 7 | 35 FROM HEALTH PROFESSIONALS Rectal Discomfort Following Colostomy Surgery

Andrew Bird RN. BSc. PG Cert. Mucus build–up Andrew currently works at Queens For ostomates who have not had their Medical Centre in Nottingham as Lead rectum removed, the most likely cause of Stoma Care Nurse Specialist in the rectal discomfort is the build up of mucus. Colorectal and Stoma Care Department. Mucus is a lubricant produced by the bowel Earlier in his career he held a post as to help the faeces pass through the system. Nurse Specialist in Pain Management. The mucus continues to be produced in the rectum after surgery even though it is no longer needed. As the rectum fills with mucus, the pressure inside rises. Nerves near the rectum sense this raise in pressure and send a message to the brain alerting Discomfort in the rectum Discomfort with the you to the fact that you need to empty the (back passage) can be a rectum intact rectum. It is in this manner that you may experience the discomfort of feeling the distressing symptom need to open your bowels after your experienced by people who colostomy operation. have had surgery to form a For most ostomates with an intact rectum, simply sitting on the toilet and bearing descending colon colostomy. After some small intestine down as if trying to open your bowels will operations, such as allow the mucus to pass and will relieve the symptom of discomfort. It may be worth Hartmann’s procedure and doing this daily to avoid the build up of loop colostomy formation, the mucus, particularly if you find you are producing a lot of mucus. rectum will be left in place colostomy Some ostomates find that they are unable but during other surgery, such to pass the mucus without assistance. This as abdominoperineal excision ascending colon may be because the rectum has absorbed rectum the water from the mucus making the of rectum (APeR), the rectum mucus very sticky and difficult to pass. In and anus is removed and the these instances, the use of glycerine suppositories, which can effectively clear wound in the bottom stitched Hartmann’s procedure the rectum within 10–15 minutes by up. In both cases, a feeling of irritating the lining of the bowel, may be necessary. They can be obtained over the discomfort in the rectum can counter or via your General Practitioner be felt and this is discussed (GP) and are safe to use on a regular basis. here along with ways that small intestine descending colon Alternatively, small enemas, such as Microlax, may be needed to help with may help to relieve the evacuation if other methods have been discomfort. unsuccessful. These will need to be prescribed by your GP and are safe to use regularly after review by a health professional. They work by lubricating the bowel and softening the mucus, which is particularly helpful if the mucus has dried ascending colon up into a plug that is difficult to pass.

rectum If these methods fail to clear the mucus you may benefit from using a rectal washout device. You must discuss this with a health professional before using to ensure that it Transverse loop colostomy is safe for you to do so. 36 | TIDINGS | SUMMER 2017 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK FROM HEALTH PROFESSIONALS If you have tried all of these or the amount Discomfort without a subsequent infection or perhaps by of mucus that is produced is excessive your radiotherapy or chemotherapy. This surgeon may discuss with you an operation rectum damage could cause the nerves to send to remove the rectum. This is another big their own messages after the rectum has operation and there is no guarantee that it been removed. An alternative theory will get rid of the discomfort, as you will suggests that the nerves get used to read below, so careful consideration is delivering the messages and continue to needed. do so even after the rectum no longer descending colon small intestine initiates them. Proctalgia fugax Pain that is experienced as a result of this is called neuropathic pain. Neuropathic pain Another potential cause of rectal discomfort can be difficult to treat, as many is a condition called proctalgia fugax. It can conventional painkillers such as morphine, be caused by a cramping of the levator ani do not work well but, if medication is muscle, which makes up a large part of the required, over the counter medicines such pelvic floor. Proctalgia fugax is a condition as Paracetamol and Ibuprofen are a good that can affect anyone with a rectum, ascending colon place to start (please read the whether they have a stoma or not, and accompanying information carefully before usually presents itself when the person using any medications and consult your GP reaches the mid–forties although has been if you are unsure). reported in children. It is reportedly more Other medications are available through Abdominoperineal resection (APeR) common in women but this may be due to your GP that may help with the neuropathic men being more reluctant to report it. The Having your rectum and anus removed is pain. Drugs that were originally developed spasming of the muscle can be incredibly likely to cause you some discomfort. Many to treated epilepsy such as Gabapentin and painful lasting from a few seconds to people that have undergone the operation Pregabalin are often used, as are twenty minutes or more and can say that the discomfort experienced at the antidepressant drugs such as Amitriptyline. sometimes be mistaken for the need to go back end is worse than that in the However, these drugs will not work for to toilet. abdomen. As with any surgical pain though, everyone and many people experience this should settle down within a few weeks Some people find that a warm bath helps intolerable side effects. after your operation. to relax the muscles although often the pain If you have been suffering with your pain will have settled before the bath is ready. for longer than three months, your GP may Simple relaxation techniques or rectal Phantom rectum be able to refer you to a specialist chronic massage may help until the spasms pass pain clinic for other treatments to be naturally but in some instances further Phantom rectum (PR) is the feeling that the investigated. A pundendal nerve block treatment is necessary. rectum is still there or still working after it involves the injection of local anaesthetic has been removed. First described in 1968, and steroid given through the buttock to Exercising the perineal muscles (Kegel various studies report the incidence of PR exercises) may also help. This should be numb the pundendal nerve which is to be between 12% and 68% (about 1 to 7 responsible for the sensations felt around done with an empty bladder and involves out of 10 people who have their back the lower rectum and perineum (the area contracting the muscles that you use when passage removed will experience PR). between the anus and the genitals). This you try to stop the flow of urine. Either sit There are several symptoms associated with may relieve your pain for a few days or even in a chair or stand with feet shoulder width PR, some more frequently seen than others, up to a few months but it is not guaranteed apart, contract the muscles for 3–5 seconds and you could experience all, some or none to work and could, in some cases, make the then release. Do this 10–15 times per set of them if you have had your rectum pain worse so careful consideration is and 2–3 times per day. As it gets easier you removed. These are (most common first): should aim to gradually increase the time needed. ❖ The feeling of wind or faeces in the you hold the muscle tight (by one second Complimentary therapies such as massage rectum per week) up to 10 seconds; also increase and acupuncture have been shown to help ❖ Urgency – the sudden overwhelming the number up to 25 times per set. When with neuropathic pain in some cases. It is, sensation that you need to have a you get to this level, one set per day should however, important to ensure that any bowel movement be enough. practitioners are registered with a ❖ Muscle cramps professional body relative to their therapy If these methods fail to resolve the ❖ Pruritus – a severe itching before consenting to being treated. problem, your GP may suggest a calcium ❖ Pain channel blocker ointment, nitroglycerine Rectal discomfort is not uncommon These symptoms can appear right after the under the tongue or a salbutamol inhaler to amongst ostomates following colostomy– surgery but may develop weeks or months try and help but, as with all medications, forming operations regardless of whether later down the line. For most people these these are not without potential side effects the rectum remains intact or not. There are symptoms will fade away. However, for so must be considered carefully. For about 1 in 3 people who develop these simple measures that you can take to help persistent and extreme cases, a referral to a symptoms they could persist for years, if not relieve the discomfort and in many cases specialist pain management service may be indefinitely. this will be sufficient. In some cases, needed and procedures such as local however, medications and further anaesthetic blocks or Botox injections could It is thought that the nerves that are treatments may be needed. If you have be considered. These are not guaranteed to responsible for sending messages to the tried the simple measures and feel that work and have been known to increase the brain from the rectum are responsible for something else needs to be done please pain intensity so this must be borne in mind the PR sensations. It may be that they have consult your stoma care nurse for help and when exploring the options. been damaged by the operation or a advice. ■ | 24 HOUR HELPLINE: 0800 328 4257 TIDINGS | SUMMER 2017 | 37 With a superior formulation and now 360º application who cares which way is up?!

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

processing with the various National Key Scheme - Key and photo ID card purchase u o y

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• A copy of your prescription r o

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• Passport photo x 1 I would also like to receive a photo ID card d a

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| 24 HOUR HELPLINE: 0800 328 4257 TIDINGS | SUMMER 2017 | 39 FROM HEALTH PROFESSIONALS YOUR QUESTIONS ANSWERED Dear Nurse Julie Rust RGN. Dip, N. MSc. Clinical Nurse Specialist Stoma/Colorectal Royal Stoke University Hospital University Hospitals of North Midlands NHS Trust

Q: I had my colostomy operation in April the past 18 months, I have had bowel 2011. I had previously had polyps irrigation [of the rectal stump] three removed which were thankfully benign, times a week using the Qufora system then an abscess formed and I ended up (warm tap water) performed by our with a stoma. I also have a mucous district nurses. This is a great benefit but fistula lower down. the results don’t last very long and every night after about three or four I coped quite well and decided I just hours’ sleep I am awakened by pain in had to get on with it as no one else was Julie Rust became Tidings Nurse in the lower back or pains in the legs going to do it for me. After about 18 December 2004. She has answered which result in having to get up and months the area around the fistula got readers’ letters and e–mails in every spend the night downstairs trying to large and the consultant told me it was issue which has been published since sleep upright in an easy chair. a hernia. I went into hospital to have it then. We look forward to many more removed and closed, but unfortunately years of publishing her very sound There are other symptoms during the when I was given the anaesthetic I had advice. day but as soon as I feel a movement a cardiac arrest. I came round quickly of mucus everything is pain and so no heart damage but of course I was Your medical questions about stoma discomfort–free. I very rarely have any left with my hernia. As I am now 87 they care management are always welcome kind of symptom when walking around. won’t risk another operation. and important to us. Any advice would really be appreciated. Now I read a lot about parastomal Is there anyone who has experienced hernias around the stoma but not about and the other end can either be closed similar problems with mucus after a the one I have, so I just wondered if and left inside the abdomen or can also colostomy? anyone else had this problem. be brought to the surface as a mucous A: This can be quite an irritating problem. A: A mucous fistula is still a type of stoma fistula. This fistula can discharge mucus You do not describe what the other and therefore we would treat it as such. and often a small pouch or a stoma cap symptoms are and therefore it may be When a section of bowel is removed is used to manage this. worth a review by your GP to see if this leaves two ends of bowel, one is As you have been told that surgery is there is anything else he can offer with brought to the skin surface as the stoma not possible another option for you regards to these. would be an abdominal support. This With regards to the feeling of needing to may help to prevent the hernia empty the rectal stump there are a worsening and also help to ease any couple of options. The first is to increase discomfort. Your local stoma care nurse the frequency of the rectal irrigation or descending colon will be able to assist you either by to get the district nurse to use a small small intestine measuring you herself for the support or enema given rectally on a regular basis; referring you to either the hospital this would need to be prescribed. Or orthotics department or a company there is an option of a rectal plug if you who provide supports. are finding you cannot control the Q: For the first eight years after the discharge but from how you describe it operation to form my colostomy I had this is not a problem. I hope you colostomy no bother, but for the past three years manage to find a solution to manage the problem with passing mucus from this problem so that your quality of life ascending colon my rectum has become steadily worse. improves. mucous fistula My consultant doesn’t wish to do a Q: I had rectal cancer which was reversal operation, mainly because of successfully treated with radiation, my age (81) and my state of health. For chemo and an anal resection three 40 | TIDINGS | SUMMER 2017 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK FROM HEALTH PROFESSIONALS YOUR QUESTIONS ANSWERED years ago. It took a long time to recover from the surgery with a great deal of Emptying a drainable bag discomfort during this period. I could In the last issue of Tidings , a reader who had problems bending his knees asked if not sit normally at all for about four anyone had any suggestions to make it easier to empty his bag into the toilet. We months. I assumed that once the received three replies: wounds were healed this discomfort would pass but sadly I still have the Regarding the reader’s difficulty in emptying the bag when sitting on the toilet. I had problem and my doctors seem unable the same problem until I realised that it would be much easier if I sat in a reverse to advise. They tell me it is not position. In other words, face the back of the toilet. something they have come across I have had my colostomy for 20 years and have rheumatoid arthritis. I too was having before and they don’t seem very the same difficulties with emptying my bag but have found an excellent solution. I interested. purchased a shower stool and adjusted the legs to the height of the toilet. I can then I realise it may not be resolvable, but sit comfortably facing the toilet to empty my bag. I have had no more problems and would very much like to know the when I go away, the shower stool is the first thing that goes into the car. reason for it. Walking and sitting remain I also have arthritic problems in most of my joints. I have a fold up stool and I put the extremely uncomfortable – and it seems edge up against the toilet bowl and sit facing the toilet so that my pouch dangles inside to be getting worse not better. Judging the bowl. This way I don’t have any mess on myself or anywhere else except where it’s by the size and thickness of the external supposed to be. horizontal scar that I have on my tummy I wonder if it could be caused by sensation is very real. And it makes it investigations to try to identify the cause similar scarring which is internal. The hard to sit normally or walk around for of this problem then it may be worth doctors don’t seem to think this is likely long. Since I work full time and am discussing it with your consultant again. and they keep mentioning ‘phantom pretty busy this is a tiring symptom to anus’ syndrome. I am sure it is not this. If there is no obvious cause then a have. The feeling is as though I have a very referral to a specialist pain team may be large cork or tampon, stuck half in half A: This is difficult to advise on as I don’t beneficial. I have had patients with this out of where my anus was. Physically have access to your medical notes and type of problem within my area and when examined externally, there is any investigations you may have had they have been able to find a solution nothing obvious to see or feel, but the done. If you have not had any to manage this, but it has been a long journey for them. Do you find it difficult to drink bowel preparation solutions? Unfortunately, this is not a problem that can be easily treated as everyone A suggestion from one of our readers is different and it may take several I’ve had Crohn’s Disease for over 20 years and a permanent colostomy for attempts to identify the problem and nine years. The day before I was due to have a colonoscopy examination, I the cause and therefore the treatment got really worked up and worried that I was not going to be able to drink the plan. I hope you manage to find a MoviPrep to clear out the bowel. satisfactory solution. ■

This would have meant that I would not be able to have a colonoscopy which If you have a general medical question would lead to more pain and discomfort as my Crohn’s disease was active. or a query about stoma management: My consultant said that during the colonoscopy he would be able to take a biopsy which would help him to plan the next move. It was essential for me E–mail: to drink the MoviPrep along with plenty of clear fluids to get the best results. [email protected] MoviPrep can be mixed with fruit squash (not blackcurrant as that stains the or bowel) and water, but in all the years I’ve done this it’s never been any better, whatever fruit squash I used. Then I found the answer: Volvic juice. Write to: You can buy Volvic juice in most supermarkets or even corner shops. There The Editor are a few flavours to choose from: Orchard Apple, Sunny Orange and Colostomy Association Lemonade. There is also Berry Medley but due to the colouring I would avoid Enterprise House this one. 95 London Street Reading RG1 4QA When making up MoviPrep, instead of adding sachets A and B to one litre of water, add them to one litre of Volvic juice. It comes in one litre bottles which is perfect. Once mixed you can start drinking it straight away or place it in the fridge to chill until you need it. Your questions will be passed on to It used to take me hours to drink 250ml but when mixed in this way I drank Julie Rust. Although Julie is not able the full litre within the hour as it tasted fine. You still need to drink clear fluids to reply directly to you, her answers as you would when mixed with water. will be published in the next issue of Tidings . I assume Volvic will work with other similar bowel preparation such as Klean Prep and Picolax. It was my consultant who suggested I contact support Julie’s answers to questions about organisations for people with bowel conditions to share this suggestion so issues such as leakage, rectal their members could benefit too. discharge, or managing hernias or retracted stomas etc. may not only help Julie says: “I’ve not heard of using Volvic, so I would advise patients to check with their you, but may also provide advice and own endoscopy unit when they are given the bowel preparation. It is also important to reassurance to others experiencing a make sure they don’t use black or red berry juice.” similar problem.

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

Dear Editor new ‘way of life’ but in the past few years I star hotel overlooking the lagoon and I’ve recently had a very nervous few weeks have travelled extensively around the world some of the kind nurses took to visiting, through taking part in the Bowel Cancer with no ill effects from my condition. One taking her shopping, swimming and to Screening Scheme. Thirteen years ago, or two tricky moments along the way I must local restaurants. When I was discharged when I was first sent the kit I contacted admit but overall no problems and nothing a flight, business class, was arranged to the screening centre and explained that would deter me from travel, albeit I Los Angeles and a further business class I had a stoma. They said that made no would think twice about venturing to some flight from LA to Heathrow. On arrival I difference and I could do it anyway. I did, developing countries mainly due to their was met by a chauffeur–driven Mercedes three or four times, with no problems and lack of ‘facilities’. that drove us home to Cornwall – Some service! It didn’t cost me a penny and on no nasty surprise – till this time, when I have been to the Far East, Australasia, top of that we were able to reclaim the they found ‘abnormality’ in the first pack. Europe, the Med, the Middle East, all over fees for the remaining lost four days of They sent another, which was clear, then Africa as well as the USA, Canada, Russia, our cruise and three days in San another ‘to be sure’. That time, there was Cuba, Mexico and the Caribbean. I have Francisco. I was happy to be assured that apparently too much specimen, so they met several people who travel without my condition had nothing to do with me couldn’t assess it – so they sent a fourth, travel insurance, saying it would be too being an ostomate and no reason could which was when I ‘blew a gasket’ and costly for them to take out; this seems a be given for the volvulus occurring. contacted Norfolk & Norwich Hospital false economy to me as should anything who are going to bring my next befall these folk then someone has to foot So, my advice to anyone travelling, don’t colonoscopy forward to two years instead the bill! forget your travel insurance! of five to ‘set my mind at rest’. I experienced the perfect example of having Best Wishes A nasty few weeks, I could have done the necessary insurance when last April Alan B without, but people need to be made whilst on a cruise from Japan to Hawaii I aware that stomas bleed easily and the became ill on Big Island, an excruciating Dear Editor blood can as easily ‘contaminate’ the stomach ache that developed with no prior Re: Ordering stoma supplies. specimen. Having spoken to Norfolk & warning. I had to get back to the ship’s Norwich Hospital, here’s the update: The doctor as fast as possible and after Having assisted my wife (as her carer) for Oncologist and Colorectal Department say examination and an X–ray I was booked several years I have been involved in the poo–stix aren’t necessary for stoma into the Hilo Medical Centre on the island. monthly stock control and ordering on her patients, who are followed regularly by My wife and I had thirty minutes to clear the behalf and have to admit it has not been five–yearly colonoscopies. cabin as the ship was due to sail. Thankfully an easy process. Judith the hospital was a very up–to–date facility and the doctor/surgeon who saw me was Unfortunately, the GP’s surgery combined Editor’s note: If your colostomy was absolutely brilliant. all her stoma items together with formed for a reason other than cancer medication on one repeat prescription and you are no longer followed up by the After further tests and X–rays I underwent which did cause some problems, until she hospital and/or do not have regular an emergency operation that lasted over ordered medication and stoma items on colonoscopies you are advised to take three hours and it was discovered I had a separate days each month. volvulus of the small intestine, that is a part in the bowel cancer screening Favouring the ‘DIY’ method, we collected programme. section that was badly twisted, gnarled and about to burst. Just over four feet of the repeat prescription for stoma care, intestine was removed, I was stitched up sending it off in a prepaid envelope to the Dear Editor with huge staples and given a private room supplier; a local pharmacy collected her I have been interested to read various where I remained for six days medication prescription. This was working letters concerning overseas holidays and whilst recuperating and receiving expert well, apart from the GP’s issuing the full the subject of travel insurance. I had a American care. prescribed monthly amounts for stoma bowel resection in 2000 when I was 58 care, leading to oversupply. This maybe is and have been an ostomate ever since. It The insurance company looked after my appropriate for medication, as the took some time to come to terms with the wife, accommodating her in a nice, four– CONTINUED ON PAGE 44, COLUMN 1

| 24 HOUR HELPLINE: 0800 328 4257 TIDINGS | SUMMER 2017 | 43 YOUR LETTERS AND E–MAILS Readers’ writes

CONTINUED FROM PAGE 43, COLUMN 3 Editor’s note: Delivery companies and I carry with me at all times. Not all pharmacies (if they dispense stoma accessible loos require a key, but whether recommended dosage/course should products in the normal course of their or not they do, I take the key out of my normally be adhered to. However, as most business) must provide Essential Services bag and brandish it as if I expect to have ostomates realise quite early on, no one which includes providing a reasonable to use it (and look surprised when I don’t day is the same and usage varies from supply of supplementary items (disposable need to!). I’m sure this helps to silence month to month. wipes and disposal bags) so these do not any critics who either have obvious, visible I did try to avoid this happening by making need to be included on the prescription. disabilities themselves and/or those who up a separate printed list specifying my Other complimentary items need to be cynically suspect me of avoiding the usual wife’s required amount of stoma care requested by contacting the delivery queue for the Ladies. products for that month, but this was company direct. Most appliance suppliers offer a ‘Need to mainly ignored. We then tried missing Use the Toilet urgently’ card and the certain items completely off the repeat Dear Editor Colostomy Association’s Photo ID Card prescription list, if we considered there I have had a stoma for almost two years would be even more convincing but it’s a were sufficient in stock until the following and early on was told that warming the sad indictment that solutions like this are month, and this seemed to be working pouch increased adhesion. Laying the necessary. You shouldn’t have to prove or well, avoiding a waste of NHS resources. pouch on top of the radiator certainly explain that you need an accessible Then the surgery decided late last year helped to produce a good seal. facility. to introduce the NHS Electronic Then we had the bathroom revamped and a If challenged, my rehearsed answer, if Prescription Service (EPS) and stoma care towel rail was put in to replace the radiator. I ever had to give it, goes something like: ordering became chaotic once again. We It was after that I noticed a problem, just now “I have a colostomy as the result of found that, after the initial settling down and again, with pancaking, where waste is emergency surgery which saved my life. period, EPS works well with medication confined to the top half of the pouch. I would rather not have it and I would repeat prescriptions sent electronically rather not have to use a Disabled loo. I’m to our designated local pharmacy but I realised then that I had been laying the sure you would feel the same”. stoma care has been fraught with pouch over rather than along the rail, problems. In particular, EPS cannot order causing an internal weld to take place. Now Finally, I notice in many public places that ‘complimentary’ items from the supplier, I place the pouch in a towel and drape it new toilets are being built as individual, and we cannot make a physical check to along the top of the rail. larger cubicles with hand washing facilities see if correct items/quantities have been inside the cubicle. Perhaps the day will David listed. This has led to over ordering when come when this will be the norm and the a repeat prescription was accidentally larger accessible loo becomes for duplicated without our knowledge and Dear Editor wheelchair users only. only discovered when the courier arrived I applaud the work of the Colostomy Best wishes with a very large box! Out of desperation I Association and your particular, recent ‘Not Sue have typed in a highlighter “please don’t every disability is visible’ awareness–raising forward to supplier”, on to the repeat campaign. prescription list, and so far it’s been 50% Dear Editor I would like to suggest an easy, pragmatic successful! I have read Tidings over the past few years approach for people – who do not have an and realise that having bowel cancer is not I really think that EPS is a good method in outwardly obvious disability – when using the end of the world. There have been reducing time and form filling for the accessible facilities and one which may many encouraging stories from readers patients and NHS staff, but it needs pre–empt any adverse comment or irritated and I have taken heart from them. My modifying to work with repeat muttering if you do. operation took place some 12 years ago. prescriptions for stoma care. For just £3.50, I obtained from the The cancer spread to my lungs, but AG Colostomy Association a RADAR key which fortunately I recovered and just have

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

44 | TIDINGS | SUMMER 2017 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK YOUR LETTERS AND E–MAILS

ant Readers’ writes We w ar o he regular annual checks. I have not climbed published on Amazon Books. I am sure t u Everest or jumped from an aircraft, as that many of your readers will read this m yo some of your readers have, but have flown and think to themselves – I may not have fro on Concorde, joined in the Mardi Gras in the courage to go on safari or swim the New Orleans, sung with Tom Jones and channel, but I could write a story of my Moved by something you’ve read in Shirley Bassey at Cardiff Arms Park and life. As they say “there is a book in this issue of Tidings magazine? Do you taken holidays abroad on my own since everyone.” have an issue that needs addressing or my wife died. an experience you’d like to share with Geoff our readers? Your advice and tips regarding flying and customs procedures have been The Colostomy Association regularly invaluable. I have always used drainable Dear Editor receives correspondence from supporters bags and have not had any problems, How about this for an embarrassing across the UK who would like to share apart from the odd near miss – well, who moment? I was getting ready to go out their thoughts, experiences and personal hasn’t? and put on my slightly furry coat? tips. Unbeknown to me, my stoma bags were All letters and e–mails are considered by There are certain foods like chillies and waiting to be cut, on a shelf behind me. curries, which I like and was told to avoid, the editorial team who decide which will I said goodbye to my husband, and set off but I must confess that after a few years be published in Tidings magazine. for an afternoon shopping. I spent an hour I decided to risk it and give it a go and in Sainsburys, had wander around my If you’d like to send a letter to be really enjoyed them. No ill effects, but local town centre, finishing up in Marks considered for inclusion on the Readers’ I appreciate that we are all different and and Spencer. I noticed two young girls Writes page please send an e–mail to: others may not be so lucky. quite close to my back but didn’t think too [email protected] So life has gone on as usual, until this much of it. year when I was admitted to hospital or a letter to: with a urinary infection. After three When I arrived home, my husband had a weird smirk on his face, and took my The Editor weeks, I was discharged with a catheter Colostomy Association shoulders and turned me around in front fitted. Since then I have not been abroad, Enterprise House, 95 London Street of the mirror. OMG, to my horror I had not but have not given up hope, even though Reading RG1 4QA I am now all bags and tubes and am 91 one, but two stoma bags Velcroed to my years old. coat. I’d spent the whole day with two Please make sure you include your full bags hanging off my back. So many name and address and telephone number Soon after I had my op, I started writing people must have seen and probably so we can contact you. Additionally, please my autobiography and last year it was hadn’t a clue what they were. I now mention whether the Colostomy understand why the two girls were so Association has permission to publish Please Note: Before acting on suggestions close behind me. And not one person told your letter and whether you would like us to use your full name or just your first from other ostomates you are advised to me. Nothing embarrasses me now and name. In the interests of confidentiality, if check with a doctor or stoma care nurse that maybe a few people had a laugh that day. you do not give us permission to use your this course of action is suitable for you. It certainly made mine. name we will publish only your initials. STOMA AID

Not a day goes by without some mention in the news about the civil war in Syria. The conflict has been ongoing for more than six years now and, as with most wars, the civilian population has suffered humanitarian aid to Syria on behalf of In April we sent our first Stoma Aid shipment heavily. Aside from the tragic loss of life international non-governmental organisations to Hand in Hand for Syria. This comprised 60 and injuries reported in the media, the (NGOs) and governments who do not have cartons, containing a total of 25,000 stoma country’s infrastructure has collapsed access to the country. They have over 300 staff bags cut to fit a variety of stoma sizes, along and its national health system has fallen on the ground, working in some of the with sprays, wipes, creams, wound dressings apart. This has included the destruction and bandages, underwear and urostomy country’s hardest hit and most difficult to of hospitals and clinics, making access night and leg bags. These supplies have now reach areas. Over the past six years they have to basic healthcare difficult, if not been received and are being distributed to established 8 hospitals in Syria as well as impossible, for most citizens. ostomates via the hospitals that the charity supporting more than 20 clinics and other Just like the UK, Syria has a large ostomate runs and a further 80 cartons will be sent at community. Earlier this year, we got in touch medical facilities, which they supply with the end of May. As you will know from our with Hand in Hand for Syria to see if our medicines and medical consumables donated previous Stoma Aid reports, help of this Stoma Aid Project could help. Hand in Hand in the UK. In 2015, this led to 144,467 patients nature changes lives. So please continue to for Syria is a UK registered charity that delivers receiving much needed treatment. donate. See below for details.

llowing: will accept the fo including: Stoma Aid dults and children How you a appliances for a All types of stom ● Closed bags gs can make a ● Drainable ba ce bags lange) ● One pie tching baseplate/f (must include ma ● Two piece bags nths in date): ll be at least 6 mo difference cts (which must a bags Additional Produ ● Night/drain ent gels tes/creams ● Absorb nd swabs ● Pas You can help make a difference to ver wipes, sprays a ● Adhesive remo ● Powder p) ers thousands of people across the world s (spray and pum ls, rings and wash ● Aerosol dry wipes ● Sea ings who cannot afford stoma supplies by , barrier wipes and ts, briefs and stock ● Cleaning wipes ● Support bel either donating supplies or making a andages ● Dressings and b ders financial donation. Please send supplies s and flange exten ● Frame ion medications you genuinely cannot use to Stoma Aid dorants, prescript cept syringes, deo ma Aid cannot ac at the following address: Sto at least six any kind. roducts must be or drugs of but all additional p eed to be in date ons must have Dean Philps ma bags do not n two–piece donati Sto te. Additionally, all Stoma Aid thin their expiry da months wi seplate/flange. g and matching ba c/o Stone Logistics/PRS Limited both the stoma ba Lorne Mill Lorne Street DO NOT be tempted to over–order or over–stock your supplies with Bolton the idea of sending the surplus to Stoma Aid. We cannot accept BL4 7LZ donations on this basis. Please only send items that you have ordered in good faith but find that you can no longer use. As we all The cost of sending unneeded supplies to Stoma Aid can know, helping the NHS save funds is vital and this in turn could also be reduced by using Hermes which has over 4,500 help prevent GPs questioning the quantity of stoma bags required. collection points across the UK. Prices start from as little as £2.70 per parcel and more details can be found about Haven’t got any supplies to donate but would still like to make a the locations of their Parcel Shops on their website difference? Why not make a financial donation to Stoma Aid? below (or by telephoning the Colostomy Association (Please make all cheques payable to Stoma Aid and send them to office with your postcode): the Colostomy Association , Enterprise House, https://www.myhermes.co.uk/parcelshop–finder.html 95 London Street, Reading RG1 4QA.

46 | TIDINGS | SUMMER 2017 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK STOMA AID

Help Stoma Aid with a Bag for Life

Order our NEW Stoma Aid ‘bag for life’ and help give ostomates worldwide a ’bag for life’.

Our new Stoma Aid ‘Bags for Life’ come in two styles, a cotton Tote Bag at only £2.49 + £2.50 P&P (measuring 38cm x 43cm) and a larger more robust Jute Bag for £4.99 + £2.50 P&P (47cm x 32cm) An ideal present, both bags make a statement when you are out shopping! The caricature was designed by a professional cartoonist whose work has appeared in a number of famous comics. All profits from sales will go to Stoma Aid.

So help us to continue our support of thousands of ostomates in need worldwide by buying one (or more) of our Bags for ✃ Life.

Order Form To order your Bag for Life simply fill in your details below and return it with a cheque made payable to the CA Ltd and send to: Colostomy Association, Enterprise House, 95 London Street, Reading, Berkshire RG1 4QA Alternatively, you can order your Bag for Life from our online shop at www.colostomyassociation.org.uk/shop

Insert quantity of bags required in each box:

Cotton Bag £2.49 each plus £2.50 P&P Jute Bag £4.99 each plus £2.50 P&P

Title: Name: Address: Postcode Tel: Email:

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

| 24 HOUR HELPLINE: 0800 328 4257 TIDINGS | SUMMER 2017 | 47 NEW BBreaaththablebl EEasy Peeell & Tubebe BBeltslt

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Win up to with Unity £25,000 f ro5m ev er0y Unity Co £1 g is a lottery with a difference. We receive income directly from the number of lost opes A om to ssoci y lottery players we recruit, so we need your support. For every £1 entry – 50p comes ation directly to the Colostomy Association. How it works

For just £1 per week you will be allocated a six digit Unity lottery number. You can purchase more than one entry if you wish. Every 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. 1 4 1

0 How to join – three easy steps 0 0 T Step one If you have any queries please call our hotline on O – Complete your personal details - so that we can L

: r e contact you if you win. 0370 050 9240 b m u

n Step two Unity – Select the number of lottery entries you n Results & Rules can be checked by visiting o i t wish to purchase per week and how often you a r t

s www.unitylottery.co.uk

i wish to play. g e R

l Step three i – Complete the direct debit instruction or c Or by phoning the Unity winners hotline n u enclose a cheque. Detach the form, put it o

C 0370 055 2291 Unity h into an envelope and return to to the g Calls cost no more than calls to geographic numbers 01 or 02. u

o You must be 16 or over to enter. r Unity

o address shown on the right panel. will B

g Unity n notify you of your lottery number. i d a e

R 3 5 Prize Entries h t i 6 digits 5 digits 4 digits in the next draw digits w Prizes £25,000 £1,000 £25 d e r e t s i g e 1. Your details (please print in block capitals) 3. Select your Payment method

R Title: First Name:

| I enclose a Cheque made payable to Unity

Payment by Cheque (minimum payment £13) A Surname: Q 4

1 Address: Please fill in the form and return to Unity G Direct Debit

R Name and full postal address of your Bank or Building Society.

, g To: The Manager: Bank/Building Society n i

d Postcode: a Address: e

R Tel: Mobile:

, t e e D.O.B.: r

t If you would like to receive correspondence via email, please tick here Postcode: S

n Email: o d Name(s) of Account Holder(s) n

o If you do not wish your name to be publicised if you win, please tick here L

5 Branch Sort Code: 9

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e Bank/Building Society s account number u o H

e Banks and Building Societies may not accept Direct Debit instructions for some types of

s 2. Payment Frequency i accounts. r p How many entries would you like each week? r e t Instruction to your Bank or Building n Society to pay by Direct Debit E

, n Monthly £4.34 Direct Debit only Service User Number o

i How often do you

t Reference: 4 2 1 1 0 2

a x i want to pay? c Every 13 wks £13 o s

s (please tick payment

A Every 26 wks £26 Instruction to your Bank or Building Society frequency and write y Unity m amount in box) Please pay from the account detailed in this instruction subject to the safeguards assured

o Every 52 wks £52 Unity t by the Direct Debit Guarantee. I understand that this instruction may remain with and, if s

o = l so, details will be passed electronically to my Bank/Building Society. o

C Signature: Date: Total Payable s i y r e t t

o Occasionally, Colostomy Association may send you samples and l (I confirm I am 16 or over and resident of GB) 4. Your consent to Play

y information that may be of interest to you. We do not pass on your t i Signature: Date:

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

available. If you would prefer not to receive these, please tick the box. s i

h For office use only: t

Detach the form, put it into a stamped envelope and Post this form in a The Unity Lottery f o

stamped envelope to: Furness Gate r return to at the address shown on the right. They e Unity t Peter Green Way o will notify you of your lottery number. m Unity Furness Business Park o r BARROW-IN-FURNESS p

e LA14 2PE TT4646 h T

The Unity Lottery, Furness Gate, Peter Green Way, Furness Business ParkBarrow-in-Furness | T: 0370 050 9240 | E: [email protected] Unity is operated by Sterling Management Centre Ltd, registered as an External Lottery Manager by the Gambling Commission under the Gambling Act 2005 – www.gamblingcommission.gov.uk

DONATIONS HELP US MAKE A DIFFERENCE If you wish to setup a regular donation, please download the form from our website: www.colostomyassociation.org.uk

Thank you for your support Single donation

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

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

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

Address: h t

- Note: n o

Please ensure i t

that we have Postcode: a i your correct c o

Telephone (home): Mobile: s

contact details: s A

full name, address,

Email: y postal code and m

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

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

e h

Year of operation: Urostomy t

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

e g a p

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

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

n

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

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

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

s l i a t

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

r

Form in its entirety. u o y

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

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

n i

l

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

e s a e l P .

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

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

extra cost to you. t a n o d

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

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

for your gift s

a

e k

Signature: Date: / / 2017 a m

o T

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

50 | TIDINGS | SUMMER 2017 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK LOCAL SUPPORT

News from Local Support groups

North Notts Stoma Support Group Stoma? What next! is a leaflet produced by the support group for The meetings are very informal informing new and existing ostomates of the nature and aims of and can cover a variety of topics, the group. Copies have been given to the stoma nurses at Kings not always just about our medical Mill Hospital, Sutton in Ashfield and local doctors’ surgeries. We conditions, so, as well as having also have our own web site www.northnottssupport.co.uk and are a more serious side to our also on facebook as a closed group. meetings, we try and keep it light hearted. On 9 December We are a small friendly group that meets on the second Saturday we will hold our Christmas of every month in Clinic 3, Kings Mill Hospital, Sutton –in –Ashfield Fuddle. from 10.00am to 12.00noon. We invite representatives from the various manufacturers of stoma products; Claire Olley from For more details contact: Oakmed will be with us on 12 August and Vanessa Dosanjh from Nicky and Tore Norman Coloplast on 9 September. When possible there is a stoma nurse Tel: 01773 715 460, to answer questions. e-mail: [email protected]

Kirby Ostomy Support Group Pembrokeshire Stoma Association

Normandy Stoma Group Meetings held at St Marks Hall, Guildford Road, Normandy GU3 2DA From 10am till 12noon Saturday 22 July 2017 Jackie Dudley from the Colostomy Association Saturday 23 September 2017 Elaine Moseley from Trio Healthcare – Healthy Eating Meetings are for those with a stoma living Saturday 25 November 2017 within Leicestershire. We offer support to Jo McNair from Hollister anyone with a colostomy, an ileostomy or urostomy, whether they have had surgery For more details contact: recently or in the past. Members who might Jackie Sanders, Secretary have problems are able to discuss them Tel: 07815 603 742 with those who understand. Partners, family [email protected] members or friends welcome. Meetings held in the Clinical Education Centre, Glenfield Hospital at least once a month, usually on the third Saturday from About six years ago, along with Peter, who 10.30am till 12.30pm; Parking is free in the had also had an operation for bowel car park in front of the centre. cancer at Withybush Hospital, I decided to Speakers followed by tea, coffee and a form our group with the support of the general chat: stoma care nurses. Pembrokeshire is very rural and evening meetings proved to be Saturday 15 July 2017 difficult so we now meet late mornings on Michael Lee – Leicester Railways dates arranged by the members. Our Saturday 19 Aug 2017 programme is varied and includes guest Dawn Buswell – Stoma Care Nurse speakers. Coffee and tea is provided and Saturday 16 Sept 2017 members are free to bring their own David Tydesdale – Garden Birds refreshments. Saturday 14 Oct 2017 Julie Ede – Bess of Hardwick Hall The next meeting will be on 25 July from 11am until 3pm. For more details contact: Janet For more information contact: Tel: 0116 239 2844 or 07464 957 982 Roy Whitfield e-mail: [email protected] Tel: 01437 760 701 | 24 HOUR HELPLINE: 0800 328 4257 TIDINGS | SUMMER 2017 | 51 SUPPORT GROUPS IN YOUR COUNTY

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.

Stoma support groups in your county

Peterborough Stoma Support Group – Cumbria Channel Islands Ostomistics Grange Cancer Support Drop in Alan Wright 0135 465 3290 / Marie: 0153 953 3279 Guernsey 0783 666 1102 Stoma Support Groups in North Cumbria Guernsey Ostomates http://www.ostomistics.org/ Stoma Care Nurses 01228 814 179 Luci Deane 0148 123 6077 / Cheshire Derbyshire [email protected] Countess of Chester Hospital Stoma Diverted Local Stoma Support Group Jersey Support Group Diane Manning: 0128 354 1311 Stoma Nurses 0124 436 6170 Jersey Ostomy Society Devon East Cheshire Stoma Support Group Fiona Le Ber: 0153 4445 076 or Devon IA Catherine McIntosh: 01477 535 071 [email protected] Martin Hornby: 01458 251 095 or Stockport Support Group email: [email protected] Angela Simpson: 0161 320 9400 / Mid Devon Ostomy Support Group 0800 652 6667 England Janice: 07923 975 051 or Warrington Ostomy Support Group 01363 776 417 or Bedfordshire Jane Shaw: 0192 566 2103 [email protected] Saturday Social Club Cleveland Plymouth & District Bowel Cancer Karen Richards: 0123 479 2278 Oops Group Support Group Berkshire Julie Morrisroe/Carol Younger: Wendy Wilson or Keith Anderson: E.B.O.C (East Berkshire Ostomy Club) 0128 728 4113 07934 922 156 Facebook: Plymouth Bowel Cancer Jackie Dudley: 0134 442 6652 Co. Durham Reading Bowel Cancer Support Group Bishop Auckland Stoma Care Group Dorset Ted Wingrove 0118 961 8297 or Betty: 0138 881 4535 or email: Colostomy Urostomy Pouch Ileostomy 07974 790 558 [email protected] of Dorset – CUPID (Bournemouth) Bristol Darlington Support Group Beryl Andrews 0120 248 3303 Bristol Ostomy Self Support (BOSS ) Sister Jacqui Atkinson: 01325 743005 Colostomy Urostomy Pouch Ileostomy Janet on 01934 248 114 or Rob on Durham Stoma Support Group of Dorset – CUPID (Poole) 0117 966 8021 Katie: 0191 3332184 Jenny Pipe: 0120 274 0440 Colostomy, Urostomy, Pouch & Buckinghamshire Cornwall Ileostomy of Dorset – CUPID (West High Wycombe Stoma Support Group Cornwall & Plymouth Bowel Cancer Dorset) Wendy Hetherington: 07717 335 884 Support Group Colin Clare – 0130 585 3238 Milton Keynes Stoma Association The Chairperson: 01726 828 419 Thia Cooper 01908 679 295 / or The Secretary: 01872 241 145, East Midlands [email protected] [email protected] or website Newhall Stoma Support Group You Are Not Alone Stoma Support www.cornw Diana Manning: 0128 354 1311 or Group Cornwall Ostomy Support Helena: 0793 233 1850 Carla 0784 6354 918 Ken Jones: 01872 863 106 or Essex www.cornwallostomysupport.org.uk Cambridgeshire Connect Lanhydrock Ostomist Support Group Connections Cancer & Colostomy Lin Hart 0127 950 5273 Mandy Rowe: 01726 832 642 Group Mid Essex Stoma Support Group E: [email protected]; Bev or Sue Scott 0135 386 0356/ Paul Foulger: 0124 522 4374 Henry Kendall: 01208 850 986 0776 695 8811 or Barbara Hunt N.E.S.S (North Essex Stoma Support) E: [email protected] or Anna 0135 386 2133 Secretary: Brian Waller: Rennie: E:[email protected] 0120 654 0449 52 | TIDINGS | SUMMER 2017 | WEBSITE: WWW.COLOSTOMYASSOCIATION.ORG.UK SUPPORT GROUPS IN YOUR COUNTY Optimistic Ostomates M.O.G.S (Medway Ostomy Group Middlesex Carol Booth: 0170 238 5510 or Angela Support) Inside Out Taylor: 0170 238 5509 Helen Or Tracey: 0777 360 5534 Sarah Varma: 020 8235 4110 Bob Redbridge Ostomists Club Maidstone Stoma Support Group (chairman): 020 8428 4242 Stoma Nurses – Chris/Lisa: Judy/Kirsty: 0162 222 4305 Norfolk 020 8970 8321 Royal Tunbridge Bowel Cancer Support Kings Lynn Ostomy Friendship Support STEPS Group Group Jackie: 0126 845 1937 or email: Bronwen Tetley CNS: 0189 252 6111 x For more info please call 01553 775 [email protected] 2287 698 / 01553 674 962 / 01553 768 271 Gloucestershire Sheppey Ostomy Group Support (SOGS) STARS (SToma And Reconstructive Ladies Big Op Group Shelley 07714 734 194 / Surgery social support group ) Gill Hopkins: 0300 422 4363. Please [email protected] Sylvia Hughes 01263 733448 Note: For ladies with one or two SWAN Stoma Support Group [email protected] Heather: 0771 144 5312 permanent stomas Northamptonshire Vale Stoma Support Group Thanet Stoma Buddies Support Group Northampton Ostomy Support Group [email protected] or text Phil (Secretary) 0184 358 7769 Ian: 0780 1316 403 (evenings) or 0794 182 7393 Lancashire Trish 0770 3188 386 Hampshire North Manchester and Bury Stoma Northumberland Solent Ostomates Support Group (New Support Group Berwick Ostomy Support Group Forest Branch) Julie Meadows (SCN) 0161 720 2815 or Bobbie Minshull: 0771 447 9320 0784 120 6910 Ron Lever 0238 089 3949 / Hexham Ostomy Group [email protected] Oldham Stoma Support Judith on 0796 792 7286 June Wilde: 0161 312 5538 Solent Ostomates Support Group Northumberland Cancer Support (S.O.S.) Phoenix Bowel Cancer Support Group members@northumberlandcancer Sally: 07527 707069 Sandra Peet: 01772 683 790, supportgroup.co.uk Southern Ostomy Group www.phoenixgroupbvh.com or Caroline or Karen on: 07756 819 291 eMail: [email protected] Nottinghamshire [email protected] North Notts Stoma Support Group Leicestershire Tore and Nicky Norman: Wessex Urology Support Group Kirby Ostomy Support Group. 0177 371 5460 Adrian Kuczynzki: 07910 786 978 Colostomy, Ileostomy and Urostomy in Nottingham QMC Stoma Support Leicestershire Herefordshire Group Janet Cooper: 0116 239 2844 / Herefordshire Stoma Support Group Rosemary Brierley: 0115 982 6691 [email protected] Carol Steele 0143 288 0656 or email: Nottingham Stoma Support [email protected] Lincolnshire Jenny or Kate: 0115 962 7736/ Hertfordshire Friends East Coast Support Group Mrs B Heath: 0115 966 3073 Colonise Betty: 0120 572 4120, Sheila: 0120 536 4493 Shropshire Anastasia 0172 776 0981 B.O.T.S. (Bums on Tums) Grantham Support Group Stevenage Ostomistics Irene Constable on 0169 123 8357 Judy Colston: 0143 835 4018 / Bobbie/Rachel: 0147 646 4822 [email protected] or Alfred: Sutton Bridge and Long Sutton Ostomy Staffordshire 0176 731 6958 Group Outlook 0140 635 1617 Moira Hammond 0778 840 2195 Isle of Man IOM Bowel Cancer Patient and Carer London Suffolk Group Bowel Cancer Newham East Suffolk Ostomy Group Heather Norman: 07624 480 973 Scyana: 0208 553 5366 Marion Fisher: 0147 331 1204 Stoma Support Group [email protected] James Pagett Ostomy Support Group Carole Cringle stoma nurse: ESSence (Ealing Stoma Support Group) (Afternoon Meeting) 0162 465 0212 Wendy Hetherington: 0771 733 5884 Vicki Blackwell on 01493 663363 Homerton Hospital Bowel & Stoma James Pagett Ostomy Support Group Isle of Wight Support Group (Evening Meeting) Optimistics Angela Davy: 0208 510 5318 or Sandra Hutchings: 0150 258 5955 CNS’s Andie Coates & Amanda 0208 510 7599 L.O.G.S (Lowestoft Ostomy Group Broadbridge 0198 353 4009 Rectangle – Colorectal Cancer Support Support) Semi–Colon Club Group Mandy O'Shea: 07899 913 617 or Tony Crowson on 01983 559 326 or Regina Raymond 020 7472 6299 Bruce Pollard: [email protected] Cancer Clinical Nurse 01983 534 180 South Woodford Support Group West Suffolk & District Stoma Group Kent Nurse Christina and Lisa: Jessica Pitt stoma nurse: Ashford Stoma Support Group 020 8535 6563 0163 851 5525 Carole Hobbs: 0130 381 4014 or St. Thomas’ Hospital Surrey Margaret Webb 0123 362 8807 CNS: 020 7188 5918 Epsom and District Stoma Support Group Atoms Support Group Surrey & South London Bowel Cancer Lindsay, Trevor or Sheena: Maria Culleton, SCN: 0122 776 9679 or Support Group 0137 273 5925 0782 799 7424 Sue Berry: 0173 755 3134 or Normandy Colostomy Support Group Dartford Ostomy Group Support John Amos: 020 8668 0796 Marina Harkins: 01483 233 126 or (DOGS) Merseyside 07852 554 049 or Jackie Sanders: Tracey, John or Sue: 0794 897 4350 or [email protected] or [email protected] I.C.U.P.S SCN: 0151 604 7399 07815603742. Website: http://www. Dover Stoma Friends Group Support normandystomagroup.wordpress.com/ Julie Bell: 0777 134 5703 or Ros St Helens Cancer Support Group Office: 01744 21831, Denys Floyd: Stoma Support Group Marshall: 0130 482 2696 or June Robin Young: 01428 723 255 Golding (Organiser): 0130 482 2696 01744 884097 or email: contact@ sthelenscancersupportgroup.org

| 24 HOUR HELPLINE: 0800 328 4257 TIDINGS | SUMMER 2017 | 53 SUPPORT GROUPS IN YOUR COUNTY Sussex The Hull and East Riding Colostomy Moray Brighton & District Support after Support Group Moray Ostomates Support Group Stomas (SAS) Pete Smith: 0798 956 5335 or Pete Meggie 01343 552 449 / Kathleen Sylvia Bottomley: 0127 355 4407 Rennard: 0793 951 8642 / 0148 279 07789 684 285 3966 or Rosanna Grimsby: Chichester Stoma support Group Scottish Borders 0148 280 1575. www.hercosg.org.uk The Stoma Care Team 0124 383 1527 Stoma Support Group The Ostomy Friends Group Nancy Fraser: [email protected] Jane Quigley: 0132 341 7400 ext 4552 or 0145 037 4012. Fiona Gentleman: West Sussex Princess Royal Stoma Northern Ireland [email protected] or Support 0145 037 1063 Tina Walker: 0144 444 1881 ext 8318 Co. Antrim Colostomy Association Volunteers West Lothian Tyne & Wear Northern Ireland GOSH (West Lothian) Gateshead Stoma Patient and Carer Chris Wright: 0772 071 7771 Scott Pattison: 07502 163 644 Support Group Mater Hospital Stoma Care Nurses: 0191 445 3152 or Karen Boyd – Stoma Nurse: email [email protected] 0289 074 1211 Ext 2329 Wales NHS Molineaux Centre Royal Victoria Hospital – Belfast John Burchell 0191 265 1047 Sarah Haughey/Audrey Steele: Bridgend Royal Victoria Infirmary Support Group 0289 024 0503 Ext 3483 Bridgend Ostomy Patients Support Group John Burchell 0191 265 1047 Anita Brankley (Secretary) Co. Armagh 0165 664 5602 or Warwickshire Craigavon Area Hospital [email protected] Warwickshire Stoma Support Group Clare Young/Lynn Berry/Janice Garvie [email protected] or 0283 861 2721 Carmarthenshire Support Group Bob: 07564 680 803 Daisy Hill Hospital Support Group Iris Williams: [email protected] West Midlands Bernie Trainor: 0283 083 5000 Ext 2222 Conwy Coventry Stoma Support Co. Down North Wales Ostomy Support Group Martin: 0794 738 5643 North Down Stoma Support Group Hazel: 07976 817 246 or Lesley: Adrian Ewing on 0785 074 1511 Wiltshire 07828 837 325 Swindon IA Ulster Hospital www.swindon-ia.org.uk Hazel/Martina: 0289 055 0498 Flintshire Bag For Life Stoma Support Group Wessex Stoma Support Group Londonderry Michael Slater: In.It.Together Causeway Support Group Faye Jones 0785 275 0772 [email protected] or on Mary Kane: 0287 034 6264 0172 274 1233 Gwent Worcestershire Blaenau Gwent Self Help Kidderminster & District Collossus Republic of Ireland Celia McKelvie: 0187 385 2672 After Support Group 6pm Brendon Drew: 0129 940 0843 Co. Mayo Cwmbran Ostomy Support Group (COSG) Yorkshire Mayo Stoma Support Marion Martyn: 094 902 1733 Philippa Lewis: 01633 791 339 / Acorn Ostomy Support Group 07504 713 069 Michelle: 0758 069 3155 (After 6:00pm) Dublin Airedale Stoma Support Bowel Cancer Support Group (ICS) Mid Glamorgan Sue Hall: 0153 564 6373 National Cancer Helpline: C.A.S.S Colorectal and Stoma Suport Group Barnsley Bottoms Up Stoma Support (00 353) 1 800 200 700 or Olwyn Colorectal Nurse Team on Group Ryan: (00 353) 1 231 0500 0168 572 8205 Stoma Nurses 0122 643 2528 or Celia Utley (Chairman) 0122 628 4262 Pembrokeshire Behind You (Calderdale & Huddersfield Scotland PSA (Pembrokeshire Stoma Bowel Cancer Support Group) Association) Stoma Care Nurses: 0148 435 5062 Ayrshire Roy Whitfield 0143 776 0701 Dewsbury & District Ostomy Ayrshire & Arran Stoma Support Group Powys Janet Edmond: 01924 512 041 or Jim Krasewitz: 0129 222 0945 The Bracken Trust Cancer Support 01924 512 072 Stoma Care And Recovery (SCAR) Centre Hambleton and Richmondshire Ostomy Maggie: 0129 427 1060/ Helen Davies: 01597 823646 Support Group 0781 773 6147 [email protected] or Rhona: 0129 455 7478 Rhondda Cynon Taf Stoma Care Nurses – Judith Smith and Royal Glamorgan Stoma Care Support Mary Hugil Fife Group Harrogate Stoma Support group Fife Ostomy Support Group Domenica Lear 0144 344 3053 Jacquie: 07768 024356 Ishbel Barr: 0159 277 2200 Swansea Leeds Bowel Cancer Support Group Lanarkshire Lynda Castle (Colorectal Nurse Swansea Ostomy Self Help Group G66 Support Group Glynis Jenkins: 0179 241 8245 Specialist) 0113 206 5535 Les Ireland 0141 776 3866 Scarborough Stoma Support Group Glasgow Stoma Support group Stoma Care Team: 01723 342 388 Chairperson: Morag Sinclair 0141 779 1322 or Jackie McChesney 01505 324 052

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