summer 2017 | issue 46 · 2017. 7. 26. · for a media pack and advertising rates e–mail...

Summer 2017 | Issue 46

06/06/2017 09:13

“The skin around my stoma nally feels healthy! It’s just one less thing to worry about!”

Thaila, ostomate since 2010

The Coloplast logo is a registered trademark of Coloplast A/S. © 2017-06. All rights reserved Coloplast A/S, 3050 Humlebaek, Denmark.

*Data on le

Thaila uses Brava® Skin Cleanser wipes to help soothe her dry and irritated skin.

Place the coupon in a sealed envelope (without postage) and send it to: FREEPOST COLOPLAST

YES – please send me free samples of the Brava® Skin Cleanser

Please enter your details so we can send it to you:

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Freesamples

There can be many reasons for skin irritation. In Thaila’s case, she suffers from dry skin and occasional leakage. Part of her solution is the Brava® Skin Cleanser which she uses to manage and soothe any red, sore skin around the stoma.

The Brava Skin Cleanser comes as a wipe and contains provitamin B5 which soothes irritated skin*, as well as acting as a moisturiser to improve skin hydration*.

To learn more about how Brava Skin Cleanser can help your skin recover and to get your free sample, ll in this coupon and post to FREEPOST COLOPLAST or visit www.coloplast.co.uk/tidings

By providing your personal information on this form you are consenting to Coloplast using it for administration and analysis purposes and to process your sample order. We may share this information with healthcare professionals and other companies required for the delivery of your products or as required by law. We may also contact you to clarify your sample requirements and to ask you to complete customer satisfaction surveys. From time to time we do let our customers know of new products or services which may be of interest by phone, email or post. By submitting your information to us you consent to us contacting you in this way unless you have indicated that you would prefer for us not to do so, by ticking one or more of the boxes. Please do not contact me by Email Phone Post

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EDITORIAL TEAM

EditorColostomate & Helpline VolunteerRosemary Brierley

Assistant Editor, Trustee,Colostomate & VolunteerSarah Squire

Colostomate & Helpline VolunteerJackie Dudley

Trustee,Colostomate & Helpline VolunteerIan Jackson

Colostomate & VolunteerPhilip Young

Stoma Care Nurse AdvisorJulie Rust RGN, Dip, N MSc

Marketing OfficerClare Matthews

Products & Services OfficerArvind Anand

Cover pictureSarah Squire, Ian Jackson, Jackie Dudley, Shell Lawesand Abi Brown promoting Colostomy Day – Find outmore on pages 28 and 29

How to contact Tidings

Editorial EnquiriesLetters, articles or other submissions

e–[email protected] write to the address below.

Advertising enquiriesFor a media pack and advertising rates

e–[email protected] telephone 0118 918 0500

To request (or cancel) your quarterly copyof Tidingse–mail [email protected] telephone 0118 939 1537

Postal addressColostomy AssociationEnterprise House 95 London StreetReading RG1 4QA

Tidings Magazine:The views expressed by the contributors are notnecessarily those of the Colostomy Association. Greatcare has been taken to ensure accuracy, but theColostomy Association cannot accept responsibility forerrors or omissions.

Disclaimer:The display, description or demonstration of productsand services or the inclusion of advertisements, insertsand samples within Tidings Magazine does notconstitute an endorsement or recommendation ofthese products and services by the ColostomyAssociation.

©Copyright 2017 Colostomy Association. All rightsreserved. No part of this publication may bereproduced, stored in a retrieval system, ortransmitted, in any form or by any means, electronic,mechanical, photocopying, recording or otherwise,except as permitted by the UK Copyright, Designs andPatents Act 1988, without the prior written permissionof the publisher. All marks acknowledged.

Our cover this time promotes ColostomyDay. It was in 1992 that the three UKstoma support Associations got togetherto organise World Ostomy Day held everythree years to promote awareness ofpeople living with a stoma. Then on thefirst Saturday in October 2014 theColostomy Association launched anannual event to complement thisinternationally–recognised awarenessday. Now known as Colostomy Day, theaim is to change the general public’sperception of stomas to make peopleaware that having a colostomy can be apositive change.

A stoma not only saves lives but it can alsoimprove the quality of life. Rob Fearn is anexample of this. His colostomy was formedduring emergency surgery, but hewelcomed it; his life was no longer restrictedby the bowel problems he had experiencedfor more than fifteen years. He was free topursue his hobby of wildlife photographyand three years after his surgery he has wonthe Daily Mail Weekend magazine wildlifephotography competition.

An acute attack of diverticulitis was thereason that Rob had emergency surgery toform a stoma. Following on from his storywe have an article explaining this condition.It is written by Alison Horner who has notonly spent a large part of her nursing careerworking on colorectal wards and operatingtheatres but has also had diverticulitiswhich led to emergency surgery to form acolostomy.

On the Dear Nurse page, we have twoquestions about rectal discomfort followingstoma surgery. We asked Andrew Bird, whohas worked as a specialist nurse in bothstoma care and pain management to writeabout why this can happen and how thisdiscomfort can be treated.

Joanne was 38, Abi was 40 and George was62 when they were diagnosed with cancer.In their real life stories they all say thathaving a colostomy was a positive changeas it saved their life. However, they all admitthat it took time to come to terms with lifewith a stoma. Janet, on the other hand, has

never known life without a colostomy. Shewas diagnosed with Hirschsprung’s diseaseand had surgery to form a colostomy whenshe was a tiny baby. Now 79 years later shewrites about A life worth Living. When shewas a child there were no patient supportorganisations for people with stomas. Itwould be in 1967, almost 30 years after shewas born, that the Colostomy WelfareGroup (CWG) became a registered charity.

To coincide with the 50th Anniversary thisyear we trace the charity’s history, first asthe CWG then the British ColostomyAssociation (BCA) and now the ColostomyAssociation (CA). On 16 September thisyear we celebrate half a century ofsupporting people with stomas at an OpenDay, a Fashion Show and Dinner atWokefield Park in Berkshire.

During the last few years I have reallyenjoyed editing Tidings. It has been aprivilege to meet and correspond withcommitted health professionals and manyother people who, like myself, cope everyday with a stoma. At the end of the year,however, I plan to step down from myvoluntary position as editor of Tidings. Thisis for two reasons: Firstly, to hand over tosomeone with fresh ideas and who isfamiliar with modern technology and moreinvolved in social media. Secondly, to returnto writing the book – on a subject farremoved from stomas – which I ‘put on theback–burner’ when I was asked to head upthe editorial team in 2014. I will, however,remain as editor for the autumn issue andlook forward to receiving your letters andreading about your real–life experiences.

I hope that many of you are able to join us on 16 September to celebrate theAssociation’s 50th Anniversary and will beout there on 7 October raising awarenesson Colostomy Day.

With Best Wishes

Rosemary

Rosemary BrierleyEditor

[email protected]

dear READERS

FROM T H E E D I TO R I A L T E AM

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T I D I N GS CON T E N T S

How to get intouch with theColostomyAssociation

The Association represents the interests ofcolostomates and other ostomates. Weprovide support, reassurance and practicalinformation to anyone who has or isabout to have a Colostomy.

How to become a supporter of theColostomy Association

Simply contact us by post:Colostomy AssociationEnterprise House, 95 London StreetReading RG1 4QA

By telephone:General Enquiries: 0118 939 1537

Stoma care queries only:Freephone Helpline: 0800 328 4257

By E–mail:[email protected]

Find us on FACEBOOK:

Join our ‘closed’ group today simply put Colostomy Association into yourFACEBOOK search bar, click on Groupand click on ‘Ask to join’ you will beassured of a warm welcome!

Visit us and register at:www.colostomyassociation.org.uk

Don’t delayDonate Online today!There are NOW two ways to donateonline

Visit the Colostomy Association websiteand simply click on the donate panel onthe home page.

Visit the Just Giving home page you will seea search panel ‘Find a Charity’ type inColostomy Association.

Cover Story28 Colostomy Day

CA News6 Bulletin Board10 Looking back and

moving forwardHistory of the ColostomyAssociation

13 Colostomy Association50th Anniversary16 September 2017

16 FundraisingA thank you for your generousdonations and fundraisers

21 Colostomy Association2018 Calendar

From HealthProfessionals

24 Diverticular diseaseAlison HornerAdvanced Nurse Practitioner

36 Rectal discomfortfollowing colostomysurgeryAndrew BirdLead Stoma Care NurseSpecialistQueens Medical Centre,Nottingham

40 Dear Nurse Julie Rust answers your lettersand e-mails

Living with a Stoma18 Irrigation

Past and Present34 Stoma and Sanity

Joanna Phillips

Real Lives8 A Life worth living

Janet’s 79 years with a stoma

22 ‘Focusing’ on a betterlifeRob Fearn

26 Pathway to acolostomyLorraine’s experience ofdiverticular disease

31 The diagnosis thatchanged our livesMargaret and George

Support15 Online support

Facebook

43 Readers’ WritesYour letters and e-mails.

46 Stoma Aid51 Local support

News from stoma supportgroups

52 List of local supportgroups

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

inside this issueall your regulars & special features


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L AT E S T N EWS

Bulletin BoardNEWS AND UPDATES

Stoma Friendly SocietyAs the UK’s largest stoma charity, we strive to be a voice for the ostomycommunity and will champion the rights and raise awareness of peopleliving with a stoma

Toilet CampaignFollowing the news that Stoke City FC now have stoma friendly toilets andsignage we are pleased to say that West Bromwich Albion FC and LeicesterCity FC have also joined our campaign.

Colostomy Association Volunteer Irene Constable (pictured right) has beenworking 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 towncentre public toilet stoma friendly.

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

Holby City got it wrongIn April the BBC aired an episode of Holby City that portrayedhaving to have stoma surgery in a negative light. As part of ourcampaign to reduce the stigma around having a stoma wereleased a statement to the press and the BBC making known ourdisappointment.

Social CareIn January we joined 75 organisations in signing an open letter tothe Prime Minister calling for her to urgently begin cross–partytalks to find a long–term solution to the crisis in health and socialcare funding. In the spring budget the chancellor announced an

As you may know Sue Hale, leftthe Colostomy Association inFebruary for ‘pastures new’. Suejoined us over five years agoand whilst she has been withus the Association has grownfrom strength to strength.During her time as GeneralManager, Sue oversaw theAssociation’s move to largeroffices and recruited staff todevelop fundraising andmarketing. She was responsiblefor the very successful 2015Colostomy Association Open

Day and fashion show, for the launch of Colostomy Day in 2014and for creating links with other bowel–related charities. Sueleaves with our best wishes for her future and grateful thanks fromus all for the inestimable contribution she has made.

We would like to welcomeLibby Herbert as our newGeneral Manager. Libby’sbackground is in Engagement,Internal Communications,Recruitment & HumanResources, Event Managementand Office Managementwithin various sectors.

She was born in Kenya andlives with her husband Stevein Reading. The trustees andstaff look forward to Libbybecoming part of the team,getting ‘up to speed’ on thegreat work the ColostomyAssociation is involved with and bringing a new perspective onwhat we do and how we do it.

additional £2 billion to councils in England to spend on adult socialcare services.

This is considered a stop–gap measure to enable councils to takeimmediate action to fund care packages and relieve pressure onthe NHS. The government has advised that it will be publishing asocial care green paper sometime in the future. At the ColostomyAssociation we are taking a keen interest in developments and,in partnership with the Care and Support Alliance, are working toensure that the issue doesn’t drop off the agenda. So watch thisspace for updates!

Appointments


L AT E S T N EWS

Active ostomatesOur Active Ostomates project launched in January2016 with our free booklet ‘sport and fitness afterstoma surgery’ and the start of a chair yoga pilot withthe East Berkshire Ostomy Club.

The booklet has been extremely popular with over1,000 distributed already. As well as examples ofcore exercises that can be safely tried at home, itadvises ostomates how and where they can getback in to or take up sport for the first time aftersurgery.

The chair yoga pilot proved a success and we haveextended the project to support groups in Ealing,High Wycombe, Stevenage, Milton Keynes, andChester, with plans to extend further later in theyear.

Caring for OstomatesOur ‘Caring for ostomates’ project is a National Lottery funded programmethat provides both professional carers and family members with practicaladvice and guidance on how to care for someone with a stoma.

The project has allowed individuals, support groups, care home andagency staff and reablement teams in Berkshire and the Home Countiesto benefit from an intensive three–hour workshop that covers everythingfrom stoma management, to a guide to different appliances, commonconcerns, support from Stoma Care Nurses, and psychological issuesconnected with having a stoma.

By educating care staff on the practical and emotional side of stomacare the Colostomy Association can directly improve the quality of lifeof those ostomates who need regular care and support.

While the National lottery funding ended at the end of 2016, the projectis continuing and also branching out geographically and in terms ofthe type of guidance it gives.

If you’re interested in finding out more about our projects please [email protected]

How your donations help2016 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 Ostomatesproject.

❖ Raise awareness of the day–to–day issues faced by ostomates through our Stoma Friendly campaign.

Thank you

It was bank holiday Monday 1 August1938 when I arrived in the world. Myeight–year old brother was not verypleased as Mum and Dad had promisedto take him to the seaside for the day. Welived on the south coast and as it turnedout that was the last opportunity theywould have to take him as the followingyear, with the threat of war with Germanylooming, barricades of barbed wire wereerected on the beaches.

After a while it became apparent that allwas not well with me. Doctors at the localhospital were unable to find out what waswrong and, as my health deteriorated, I washastily christened in our nearby church thentaken to Great Ormond Street Hospital inLondon. It was here that the eminentsurgeon, Thomas Twistington Higgins, soondiagnosed the problem. I had been bornwith Hirschsprung’s disease; he operatedand my journey through life with acolostomy began.

Until the age of seven I was to spend longperiods of my life in Great Ormond Streetundergoing several more operations. It wasduring this time that sadly my mother wasto die from TB which was then rife inEngland, so I never got the chance to knowher. Things were so different in hospital inthose days. Visiting was not encouragedbecause of the fear of infection and in casethe children became upset and of coursewhen World War II broke out travelling toLondon became dangerous. To compensatefor this the hospital took photographs of the

children which were then posted to theparents to reassure them that their childwas in safe hands.

My only bad memory of Great OrmondStreet was going to theatre. Back then therewas no injection to send you to sleepbeforehand, just a black rubber mask forcedon your face, before an anaesthetic wasadministered. Christmas was magical, thenurses wore their capes with the red sideshowing and walked through the wardscarrying lanterns and singing carols. Thenthey distributed wonderful presents given

by the many benefactors of the hospital.Another memory is of being evacuated toanother hospital in Surrey in 1940 when thebombing of London was at its height.

Last year I had the privilege of having aguided tour of Great Ormond StreetHospital along with other ex–patients andformer staff and to visit Peter Pan Wardwhere I spent so much time as a child. Itwas soon to be demolished but thenursery–rhyme wall tiles that I rememberedhad been saved and now take pride ofplace in a reception area.

Going back to my childhood, when I wasfinally allowed home I found life was goingto be so different. After my mother died, myfather’s sister moved in to look after thefamily. She was very Victorian in her waysand very strict. She told me that I was goingto be brought up in a very tough way, in herwords: “to help you cope with the knockslife will throw at you” and yes, I have takenquite a few knocks, but thanks to her havealways managed to bounce back.

Growing up pre NHS with a colostomy wasnot easy, things that medical staff encouragetoday were taboo back then. I wasforbidden to do any PE at school, not that Iminded getting out of having to play hockeyon a freezing cold day. Diet was alsorestricted to foods like steamed fish and eggcustard which were easy to digest andwhich I still dislike eating today as much asI did then. Few appliances were available inthose days. In my case, it was a pad ofcotton wool, on top of that a sort of plasticdisc and this was all held in place with asurgical belt which was neither effective norcomfortable. As you can imagine, ‘accidents’were a frequent occurrence. We really arespoilt for choice now, well in this country atleast. My heart aches when I read about theconditions that people with a colostomyhave to endure in developing countries.

By the age of 12 I began to feel moreconfident about life, but then I had morehealth problems and operations toovercome. So many stays in hospital meantthat my education was disrupted and I leftschool with no qualifications. In all, I havehad surgery from top to toe, but I am stillhere to tell the tale.

After leaving school I found work in a localfactory as this was the only employmentopportunity open to me. From here on lifeprogressed as near normal as I could havewished. I did everything that all otherteenagers were doing: dances on Saturdaynights, visits to the cinema several times aweek and get–togethers in pubs if anyonehad a birthday to celebrate. It was at one ofthese birthday celebrations that I met myfuture husband. He was home on leavefrom the Royal Navy. We got talking and itturned out that his aunt worked at the same


R E A L L I V E S

A Life worth living

1939 In Peter Pan Ward at Great Ormond Street Hospital

2013 Holding my greatgranddaughter


R E A L L I V E S

factory as I did, and, to cut a long story short,he asked if I would write to him while hewas away. We corresponded for 18 months,and when he left the Navy we got engaged.

It was then I told him about my colostomy.Although I was not ashamed of mycondition, in those days, people did not talkabout personal things like that, so it was notuntil that point in our relationship that I feltI wanted to say anything. I was lucky in thefact that in the Navy he had servedalongside someone who had a colostomywhich made it easier to explain. We went tosee my GP together but, rather than try tohelp, he put obstacles in the way. He toldus that I would never be able to havechildren and said to think carefully aboutgetting married at all.

We were married a year later, somethingthat I had thought would never be possiblefor me. I remember I bought somesuspender belts, cut off the suspenders andwore them instead of the horrible surgicalbelt. It made me feel more feminine.Despite what the doctor had said, I becamepregnant in 1960. I had to buy an old–fashioned corset that laced up at the sidesso that I could adjust it to fit my bump. I wasable to have a natural birth and was blessedwith a son and then later a daughter.

I cannot remember when stoma bagsbecame available, but I think it must havebeen the late 1960s. They were everythingthat the present–day stoma bags are not:flat, noisy, the adhesive almost non–existent and they did not fit the unevensurface surrounding the stoma. The firsttime I saw a stoma care nurse was in 1989.

Unfortunately, after 32 years our marriageended in divorce. Although I had workedpart time whilst bringing up the children, Iknew I would have to find full time work tosupport myself. As luck would have it, I

heard they were advertising for nursingauxiliaries on the psychiatric ward at thelocal hospital. I went for an interview andwas lucky enough to be offered the post andspent 13 years doing a job that I really loved.

After some years of living alone andworking hard, a new man entered my life.He had been a family friend for a long timeand already knew that I had a stoma. Whenhe underwent the same surgery, I was ableto reassure him. We eventually married andwere very happy, but this wasn’t to last as,after just three years of marriage, myhusband died.

Although I am alone again, I am not lonelyas both my son and daughter had threechildren so I now have six grandchildrenand three great grandchildren. My life is sofull with family and a wide circle of friends;we go to the theatre, concerts and on daytrips together. I am involved with my churchand WI, belong to a scrabble group, gowalking and love hosting dinner parties.Being a football fanatic there is nothing Ienjoy more than the chance to go to theEmirates Stadium to watch my belovedArsenal play.

In recent years, I have caught the travel bugand have managed to travel around mostof Europe, the USA, taking in eight differentstates from Dallas to Washington DCincluding New Orleans, which because ofmy love of jazz was a dream come true.Going to China was a wonderfulexperience, but a word of warning, thepublic toilets can prove a bit of a problemif you have a colostomy. It is better to usetoilets in hotels or better–class restaurants.You are also warned not to use water fromtaps, not even to clean your teeth. Sosomething else to consider, but despiteeverything, China is still an amazing countryto visit.

I hope my story has given you inspirationand encouragement to live life to the full.

My grateful thanks to all the people whohave made my life worth living.

Janet

Medical Terms Explained

Hirschsprung’s disease is a condition,present from birth, in which nerve cellsthat control the movement of faeces areabsent in part of the bowel. This resultsin pain, constipation and blockage.

2009 At the Colosseum in Rome


CO LO S TOMY A S SO C I AT I O N H I S TO R Y

As you may know we have beenresearching the Colostomy Association’shistory in readiness for our 50thanniversary. With so much material inthe archives it hasn’t been easy! In thelast half century, we have changednames three times and occupied fivedifferent premises. From humblebeginnings in a London hospital, we nowhave over 23,000 registered supportersnationwide. More recently, through ourStoma–Aid campaign we have started toreach ostomates across the globe. Tomake sense of our history we havedivided it into a series of periods, whichyou can read about below. First though,it’s worth saying something about thecontext in which today’s charity wasformed.

Our origins can be traced to the 1960s.This was a torrid time as it had becomeclear that scientific advances were creatinga cost dynamic in the fledgling NHS: witheach advance, more people could betreated. In an attempt to reconcile theproblem, government put its faith intechnology and modernisation. Theyenvisaged that building state–of–the–artDistrict General Hospitals was the way tooffer high quality healthcare while at thesame time containing costs througheconomies of scale. With governmentconvinced that ‘modern’ was good, somefeared patients might just become‘medical problems’ to be solved throughthe application of technology. Luckily, atthe coalface, healthcare professionals werenot prepared to allow this dystopian visionto become a reality. At one Londonhospital the therapeutic value of humancontact was appreciated by one of thesurgical registrars. In 1963 he approachedGertrude Swithenbank (herself acolostomate) and asked if she would visithis colostomy patients on the wards. Itquickly became clear that her visitsencouraged recovery. She provided thereassurance that patients needed andproof that it was possible to lead an activelife after stoma surgery.

In the same year as Gertrude started herhospital visits she told Frances Goodhallabout what she was doing. By 1963 Franceshad been retired for some years, whichsuggests that the women may have knowneach other. One possibility is that they hadworked together as nurses. Either way, itwas an important connection. In 1966, as a

result of Frances’ involvement, the KingEdward’s Hospital Fund provided themoney to conduct a pilot study into theneed for a national service forcolostomates. 29 hospitals in London tookpart. The findings of the study led to thefounding of the Colostomy Welfare Group,which advertised for its first member of staffin November 1966.

The Colostomy Welfare Group(CWG) 1967–1989The recruitment advertisement (reproducedin the last edition of Tidings) resulted in theappointment of Emily Brain as welfareofficer. Emily went on to become ourgeneral secretary from 1968–79. The CWG

began life operating out of two rooms at StLuke’s Hospital, Chelsea.

As you can see, much was achieved in theyears that followed.

1967: With demands for the services of thegroup spreading to other hospitals, theCWG became a registered charity.

1970: As demand continued to grow, thecharity struggled to raise sufficient funds. Inorder to continue its activities, CWG appliedfor, and was granted, £5,000 from theNational Society for Cancer Relief (nowMacmillan Cancer Support). This coveredthe bulk of operating costs.

1972: CWG moved to new premises inEcclestone Square, London. It also becameone of four ‘associated charities’ financedby the National Society for Cancer Relief.This arrangement continued for the next 33years.

1980s: Consultant surgeon Mr BrendanDelvin CBE, FRCS, assisted in thepreparation of support literature. Foreignlanguage versions were also produced. Asyou can see from the photos, our literaturehas since undergone substantial change!

Late 1980s: CWG had developed a greater presence being mentioned in the publications of other charities,manufacturers and suppliers, as well as inleaflets written by healthcare professionals.By now, the CWG had also established anetwork of area organisers and visitingvolunteers (all colostomates).

Looking back and moving forward

Frances Goodhall came from a medicalfamily. Three of her uncles worked atGuy’s and in 1916 she began training asa nurse at the same hospital. Thismarked the start of a stellar career inwhich ophthalmic nursing became hergreat love. According to her biographer,Monica Baly, Frances’ delicate hands andskill in the field became legendary. At theage of 35 Frances was appointedassistant general secretary of the Collegeof Nursing. In 1935 she took over asgeneral secretary. In this capacity shecontributed to post–war discussionsabout the NHS, coming into contact withfigures such as Nye Bevin. By the timeshe retired, Frances was well respectedin medical and political circles.

Frances Goodhall (1893–1976) CBE, MBE

Emily Brain MBE, pictured in later life

The British ColostomyAssociation (BCA) 1989–2005As the CWG became well known, issuesemerged with its name. The word ‘welfare’was the problem. It was felt that this was misleading and gave the impressionthat financial support was on offer.Consequently, the name ‘British ColostomyAssociation’ was adopted in 1989, with thepurple iris as its emblem. Rent increases led to the BCA relocating to Reading. It was from here that the first issue of Tidingswas published, the 24–hour helpline waslaunched and the charity continued to buildits impressive portfolio of literature. By2005 BCA was taking in excess of 6,000phone calls per year, sending out 25,000leaflets to ostomates and healthcareprofessionals and had volunteers across thecountry visiting patients, talking to them onthe telephone and attending open days.The BCA years had many other highs:

1992: Following a meeting with the IA andthe Urostomy Association the three charitiesset up a co–ordination committee toorganise the first World Ostomy Day. Thisevent, which aimed to raise awareness ofthe needs and aspirations of ostomates, hascontinued ever since.

1998: The first issue of Tidings waspublished and announced that consultantsurgeon, Mr Brendan Delvin (involved sincethe early days of CWG) had agreed tosucceed Sir Ian Todd as the BCA’s nextpresident. Sadly, Mr Delvin died six monthslater.

2000: Tidings started to includeadvertisements as a way to coverproduction costs. Initially adverts wereenclosed as loose inserts. The iris emblemunderwent change with a new bolder look.This coincided with the release of a revisedset of literature. Colorectal surgeonProfessor Robin Phillips became the BCA’snew president.

2002: Helpline hours were extended toinclude weekends and bank holidays.

CO LO S TOMY A S SO C I AT I O N H I S TO R Y


British ColostomyAssociation, 2000

ColostomyAssociation, 2009

ColostomyAssociation, 2017

An early booklet,date unknown

The first issue ofTidings, July 1998

Tidings, Spring2017

Iris Emblem,2005

Iris Emblem,2016

The Colostomy Association,2005–to dateIn 2004, what was now the Cancer ReliefMacMillan Fund, announced its intention to discontinue the financial support of‘associated’ charities. The BCA thus facedthe daunting prospect of trying to go alone,becoming a self–funding charity. Luckilyboth the appetite, energy and courage to

continue was there. The idea thatostomates might be left without supportand that four decades of hard work couldbe lost was inconceivable. Eight peoplecame forward to act as trustees and on 15 November 2005 the ColostomyAssociation was formed. To accord withthe change, the new charity launched awebsite to further reinforce its message thathelp was there for people in need. The lasttwelve years have been exciting times,including the challenge of raising our profileon the internet and reaching out toostomates in the new digital age:

2008 & 2013: Saw moves in premises, withthe Colostomy Association ending up atEnterprise House in Reading, where we aretoday.

2010: Further improvements were made tothe website making it easier for ostomatesto access news and information. By 2015the site was receiving over 513,000 visitsper annum.

2012: The Colostomy Association’sFacebook group was made ‘closed’. Withina year it had 1,000 members. Today, thisever–growing and vibrant communitynumbers well over 4,500 and provides avital, safe environment in which ostomatestalk and support one another.

2014: Mr Ian Daniels took over as ourpresident from his colleague Professor BillHeald who had held the position since2008 and was an internationally knowncolorectal surgeon. The ColostomyAssociation launched its Junior OstomateSupport Helpline aimed at providingsupport to the families and carers ofchildren with stomas and other bowel andbladder dysfunctions.

2015: The first monthly e–newsletter wassent and in excess of 84,000 copies ofTidings were distributed.

2016: Saw the start of two new campaigns:Stoma Aid and Stoma Friendly Society. Bythe end of October more than 182,000stoma bags had been distributed todeveloping countries, while our stomafriendly toilet stickers started to appear atsites across the country, following a letterand social media campaign.

Looking Forward…We hope that you’ve enjoyed this trip down memory lane and seeing how theColostomy Association has developedover the past half century. We are confidentthat the next 50 years will be just asexciting. As well as continuing to provide allour current services we have plans toexpand the support that we give. We’relooking forward to sharing these plans withyou in the months and years ahead. In themeantime, don’t forget our Open Day on 16 September. It would be great if youcould drop by and say ‘hello’! ■

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Introducing our NEW practical and eff ective stoma range with integrated ventOur new one-piece colostomy and ileostomy pouches with their specially designed integrated vents allow inward and outward fl ow of air to minimise ballooning and pancaking.

This helps extend pouch usage and leaves you feeling more comfortable for longer.

50th AnniversaryOpen Day 2017 and Fashion Show

Saturday 16 September 2017

(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 .............................................................

—————————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.

£ .

Details: Title: First Name: Surname:

Address:

Postcode:

Telephone (home): Mobile:

Email:

Dietary requirements:

I would like to attend the following Colostomy Associationevents at Wokefield ParkGoodboys LaneMortimerReadingRG7 3AE

Booking Form


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Freephone National: Freephone Scotland:

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We are open 6 days a week: Monday to Friday 8am to 8pmSaturday 9am to 1pm

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TODAY

CAT4617

The CA Facebook Group is an activeonline support group of over 4,500members. New members arrive,sometimes with many worries about lifewith their stoma and the Group pulltogether to help out. Friendships formwhile problems are shared and solved,often with a few laughs on the way.Group Admins: Ian, Michael, Sally, Steveand myself try to arrange a couple ofGroup Meets a year in different parts of the country where members can meetin person, where virtual hugs can beturned into real life ones.

In March 2017 we were kindly invited toGlasgow by Coloplast. Ian and I attended a conference in Edinburgh last year andspent the two days manning the ColostomyAssociation stand opposite Coloplast. Herewe met Damian Crombie, NHS LiaisonManager, and we happened to mention wewere keen to hold a Facebook Group Meetin Scotland. He said Coloplast/Charterwould be happy to get involved – I didn’tneed asking twice and was on it as soon asI got home!

Claire Jackson, Territory Manager forScotland, did an amazing job of organisingthe event and despite my constant emailsasking this, that and the other aboutvenue, food, accessibility and much more,she came up with the perfect day. Thiswas our first official Meet Up in Scotlandand it was lovely to see so many localpeople attend, along with a few die hardmembers who travel anywhere for theMeets, this time travelling hundreds ofmiles to join in.

Coloplast held the event at House for an ArtLover in the grounds of Glasgow’s

Bellahouston Park. We had the top floor ofthe house and it was a beautiful setting with amazing views. We were met byColoplast and Charter representatives:Adrian Summerson, Senior Market Manager, Wendy Osborne, Ostomy ClinicalLead, Rebecca Preston, Territory ManagerScotland, along with Claire and Damian.

After tea, coffee and those all–importanthugs, the day began with interesting talks on the history of Coloplast andCharter by Claire and Rebecca, followedby a talk on hernias by Wendy. Withhernias being so common in ostomates itwas great to have chance to interact withWendy and ask questions. I, for one, learnta few things.

We broke for lunch (lovely spreadColoplast!) then carried on the afternoonwith a talk about sore skin – another hottopic for us ostomates and again mostinteresting. By that point we had beensitting down for a fair amount of the day soto encourage us to be active ostomates,Coloplast had arranged for us to have anintroduction to Tai Chi. This was great funand, although many of us collapsed into fitsof giggles at various points, it was great tosee everyone joining in and enjoying thegentle exercise. Those who weren’t able to take part seemed to have almost asmuch fun watching and taking some very‘interesting’ photos!

After a quick pit stop for a cuppa and a tastycake we returned for the final session withAdrian who was so relaxed after the Tai Chithat he led the session with no shoes on!We discussed life with a stoma andcompleted questionnaires on stoma issues.Interestingly our group seemed to have a

lower incidence of problems compared tothe average.

By now I was hearing murmurs about somerugby game that was taking place betweenEngland and Scotland. This is the secondMeet Up where I have managed to clashwith a Six Nations match so we headed tothe Premier Inn where many of us werestaying so those who wanted to could catchup with the game. After a very good resultfor England (apologies to our Scottishhosts!) we met for drinks and dinner, kindlycovered by Coloplast. We held a raffle witha number of prizes including umbrellasdonated by Vanilla Blush, Stoma Aid totebags, goodies donated by Group Adminsplus of course a Tomas Bear personalisedfor the Meet. Many people donated thedeposit they’d paid to secure their place onthe Meet and that along with raffle ticketsales resulted in a brilliant £200 raised forthe Colostomy Association.

We had a lovely day and I would like tothank Coloplast for hosting the event andfor being great company. To any FacebookGroup members who would like to attendone of these Meets we hope to see you atthe Colostomy Association Open Day inSeptember, and keep your eyes peeled onthe Group for the next event.

Colostomy Association Facebook Group

GroupMeet inScotland

Sarah Squire, Trustee and Facebook

Admin writes:

If you would like to join the closed CAFacebook Group, search “ColostomyAssociation” in your Facebook searchbox. Choose the Group and when youget the Group page, click on the jointab. One of the admins will add you assoon as they can. We look forward toseeing you there.


0 N – L I N E S U P PO R T

Tai Chi practice at the Group Meet in Glasgow

Fundraising2017 RaffleThe last issue of Tidings contained twobooks of tickets for the 2017 ColostomyAssociation annual raffle, and this yearthere’s an even greater chance to win!We’ve still got our fantastic first prize of£2,500, second prize of £500, and fourchances of winning £250, but there are nowfive chances to win £100 as well. Whatbetter way to start the new year thanspending your winnings in the sales or ona last–minute holiday!

Tickets are £1 and all money raised from theraffle will go towards supporting vitalColostomy Association services such asour 24–hour helpline, free literature andTidings magazine.

We’ve had a brilliant response so far, and ifyou haven’t returned your tickets yet there’sstill plenty of time to do so.

All completed stubs need to be in by Friday15 December and the winners will benotified by email, phone or post andannounced in the spring 2018 edition ofTidings.

Please note there is a printing error on thestub of the tickets. The date of the draw isstated as taking place in 2016 rather than2017. The draw date is correct on the ticketportion that the purchaser keeps. Thefundraising regulator and the GamblingCommission have both confirmed thatthese tickets are valid for sale.

Darren’s DazzelsParachute Jump

Darren Pote is jumping out of an airplanefor the Colostomy Association!

In his own words Darren has chosen toraise funds in this way because “On the 13 July 2016 (my 43rd birthday) I wasrushed back into A&E with severe stomachpain and PR bleeding, I was losing so muchblood.

I had a sigmod diverticulitis perforation andrequired immediate surgery. After the opwhich took 14 hours, was a living nightmareas I got sepsis and pneumonia. I was cutfrom the chest to the private area (43stitches) I’ve had so many complications,my wound had to be opened in threeplaces to drain the infection, severalmonths under tissue viability. It’s only noweight months later it’s healing.

I want to the parachute jump to raise asmuch money as I can for the ColostomyAssociation who receive no governmentfunding. I found their website, blogs etc aGod send when I hit some very very darktimes.”

You can support Darren by donatingthrough his just giving page at https://www.justgiving.com/fundraising/Darren-Pote

Winnie’s 5th BirthdayOn Saturday April 8 Christine Burgin held a‘5th Birthday’ for her Stoma ‘Winnie’.

The party took place in her local scout hut(Christine has been a scout for 38 years)and through a raffle, tombola, sales of cakesand coffee, Christine and her friendsmanaged to raise an amazing £1,324!

Thank youYet again our supporters, their friends, andfamily members have been busy raisingfunds for the Colostomy Association. Asalways we are hugely grateful and humbledby the efforts of so many people who helpfinancially support our various services.

The Gateshead Stoma Support groupraised £373.81 for Stoma Aid through rafflesand refreshment donations.

Mooray Ostomates donated £300 as aresult of their fundraising activities.

The Church of Scotland Guild Irvine andKilmarnock Presbyterial Council donated£50 to the Colostomy Association.

Salts healthcare raised £86 after theydonated £1 for every response they

FundraisingFocus

FUNDR A I S I N G WE N E E D YO U R H E L P



received from a recent survey theyconducted with healthcare professionals.

Judi and Brian O’Connor collected £160 ontheir Golden wedding anniversary throughasking friends and family for donations tothe Colostomy Association rather thangiving presents.

Hilary Tristram donated £325 which wasreceived for donations from friends andfamily at her ‘un–birthday’ lunch.

The Stoma Care department at ColchesterUniversity Hospital collected £40 fromtheir Christmas Support group meeting.

The Kay Park Parish Church Guild donated£50.

Are you an ActiveOstomate?

The Colostomy Association is looking forostomates and non ostomates who areinterested in representing the charity invarious sporting events in the near future. Itcould be as individuals or as a team.Whatever activity you enjoy be it running,cycling, bowls, walking, swimming, tennisor football, we’d love to hear from you!

For further information or to register your interest please contact ourdevelopment officer Giovanni Cinque [email protected]

Unity Lottery

It’s now been over a year since the UnityLottery replaced our 500 Club and we areglad to say that not only is its popularitygrowing with supporters on a weekly basis,they are also winning regularly as well!

Members have the chance of winning amain prize of £25,000 each week (plus a£2,500 donation to the ColostomyAssociation), as well as smaller prizes of£5, £25, and £1,000. Entry is only £1 perweek and we receive 50p for every £1 ticketsold. You can join by completing the formon page 49 or online by visitingwww.unitylottery.co.uk but remember tolink to our Charity.

Grants and TrustsThe Colostomy Association is grateful tothe following trusts and foundations whohave recently agreed to support our workthrough contributions to our core costs andvarious projects:

The Lynn Foundation, The Constance TravisCharitable Trust, The Cardy Beaver Foundation,and the Sir James Roll Charitable Trust.

TextgivingYou can now make a donation to theColostomy Association with a textmessage!

Whatever mobile network you’re on, simplytext our unique code CASS01 and anamount of £4, £5 or £10 to 70070.

Donating via text is free. There is no cost toyou for sending the text message and yourfree allowance or bundle will not beaffected – the only charge will be thedonation itself.

What’s more 100% of your text donation(including Gift Aid) will be sent to theColostomy Association.

F U N D R A I S I N G WE N E E D YO U R H E L P

The amount you donate will be added toyour mobile phone bill or deducted fromyour pay as you go credit. JustTextGiving willsend you a link in a text messageconfirming your donation

Leave a Legacy

Giving in your will is a truly special way tomake a lasting difference. It will helpostomates of tomorrow, their familymembers and carers, receive life–changingsupport from the Colostomy Association.

What your gift means

Legacies large and small can have anextraordinary impact for all the people wehelp and support. They can:

● Ensure there is always a voice at theother end of the phone.

● Train volunteers to provide support atopen days and in hospitals.

● Fund our campaign for a stoma friendlysociety.

● Make sure the ostomates of tomorrowreceive the same support from us thatyou have.

How to leave a legacy

A solicitor can help you to write a will or,if you already have a will, a codicil. Yourlegacy could be used wherever it is mostneeded or you can choose to support aspecific area.

Your solicitor will need the followinginformation on our charity:

Name: Colostomy Association

Registered address: Enterprise House, 95 London Street, Reading RG1 4QA

Charity Commission registrationnumber: 1113471

After you have provided for your lovedones we hope you will consider a gift toour Charity.

In this 50th Anniversary year of the Colostomy Association, I started to look intohow long colostomy irrigation had been practiced and I have to say I’m surprisedhow far back it took me. I thought it was a fairlymodern approach to colostomy management but in1934, in the British Journal of Surgery, Tilson Dinnickgave an account of a child born in 1793 with animperforste anus. A surgeon named Duret formed astoma and four days post op ordered a ‘washing out’with water and syrup of rhubarb! Other authors givecredit to Pillore and Fine who suggested the use ofirrigation as a way of managing a stoma sometime inthe 18th century.

In 1927 J P Lockhart–Mummery revisitedirrigation in his publications and itspopularity did increase for a while, althoughsome negative results influenced success.In the 1940s an American music teacher,Sophia M Secor, became an importantspokesperson for the irrigation method. Shewrote about the difficulties sheencountered while learning to deal with hercolostomy, and how she became acolostomy counsellor at Beth DavidHospital in New York. It wasn’t until the1950s when specialist equipment wasintroduced, including early versions of the

cone we use today, that irrigation becamemore widely used.

I am always delighted to receive emails andletters from our readers about theirirrigation experiences and would love tohear from people who have been long termirrigators. What were the early kits like? Howmuch training did you receive? I feel veryfortunate to be an ostomate in moderntimes as the variety of products and choiceswe have to allow us to manage our stomacomfortably and confidently mean we canget on with enjoying life.

Irrigation is a method of colostomymanagement which involvesusing specialist equipment tointroduce warm water into thebowel via the stoma. The watercauses muscular contractions(peristalsis) within the bowelwhich in turn cause expulsion ofits contents.

Many Ostomates prefer thismethod of colostomymanagement as it gives them asense of control. If you feel youwould like to try irrigation youshould first contact your stomanurse to see if you are a suitablecandidate. If you get the goahead they will then arrange atime to teach you. For moreinformation see the ColostomyAssociation website or purchasethe Irrigation and you DVD usingthe form on the right.

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

Sarah Squire


L I V I N G W I T H A S TOMA I R R I G AT I O N

Irrigation: Past and Present

Sue began irrigating just six weeks afterher colostomy operation in 1998 afterbeing encouraged and taught by wardsister, Ann Leppington Clarke. Irrigationbecame Sue’s ‘soapbox’ subject as shewas determined to spread the word aboutthis liberating way of managing acolostomy. Sue would promote irrigationwhenever it was appropriate. She wasamong the first Colostomy Associationvolunteers to man the 24–hour helplineso would often ask callers if they hadconsidered irrigation if she felt it would fittheir lifestyle. In 2006 Sue suggested aneight–page supplement on irrigation befeatured in Tidings. This appeared in theWinter 2007 edition and was laterreproduced as an information leaflet. In2009 Sue began writing the regularirrigation page in Tidings and continueduntil 2014 when she passed the baton onto me as she needed surgery to form anileostomy.

I feel very privileged to have taken over theTidings Irrigation page from Sue, and wasdelighted to be involved in the productionof the Colostomy Association ‘Irrigationand You’ DVD, also the brainchild of thisspecial lady. Sue had long wondered whyirrigation wasn’t more widely offered to

patients and wondered if part of the reasonwas time constraints and lack of confidencein teaching the procedure among stomanurses. At conferences and meetings withhealth professionals Sue asked questionsand it became clear there was some truthin her assumptions. She had the idea ofproducing a DVD to highlight the benefitsof irrigation for patients but to also includea toolkit to support best practice of how toteach the technique to patients.

Two DVDs were produced, one aneducational tool for health professionalsand patients, raising awareness ofirrigation and another which is moreclinically based to increase confidence inthe teaching of irrigation. Both DVDsfeature Colostomy Association Trustee,Judy Colston, irrigating plus other patientsand nurses discussing the advantages ofthis method of colostomy management.We tried very hard to include hints and tipswhich would help irrigators, new and old,master the technique in order to make itwork best for them.

Sue, you did us proud. The DVDs arebrilliant and will continue to help makeirrigation more widely promoted, to providesuitable colostomates with this choice ofstoma management. ■

Colostomy Association has always beenvery committed to promoting irrigation andcredit for this must go to Sue Hatton. WhenMacMillan withdrew funding from theBritish Colostomy Association, Sue wasamong the eight volunteers who steppedforward to ensure that support forostomates would continue. When the newColostomy Association became aself–funding charity she was elected Chairof Trustees.

Order Form Colostomy Irrigation and You (Patients)

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

To obtain your single copy of Colostomy Irrigation and You at the special price of £4.99 (inclpostage and packing) simply fill in your details below and return it with your cheque madepayable to the CA Ltd, to:Colostomy Association, Enterprise House, 95 London Street, Reading, Berkshire RG1 4QA

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

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Title:

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Please allow 30 days for delivery.

Colostomy Irrigation and You DVD

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L I V I N G W I T H A S TOMA I R R I G AT I O N

Sue Hatton

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They build the comfort, we build the security

Ever sat there on a cold miserable dayand wished you were somewhere else? Ifso, then our 2018 Calendar is just theticket. Spiral bound and measuring210mm x 420mm, each month opens toreveal a stunning photograph which, witha little imagination, will see you jettingoff to faraway places. We have everythingcovered, from cityscapes to sunsets intobacco coloured skies. There is alsoplenty of space to record appointmentsand even, perhaps, the date of your ‘real’holiday.

Our calendar competition received a total of96 entries and, just like last year, thestandard was so high that it caused ourjudging panel a few headaches. Every singlephotograph was taken by one of oursupporters. Mr Kevin Young was the eventualwinner with his photograph of a sunset nearStromness, Orkney, Scotland. Second andthird place went to Mr Trevor Andrews and Mrs Phyllis Oliver respectively, withphotographs of Castillo de Casares, Málaga,Spain and Yardenit Baptismal Site alongRiver Jordon, Galilee, Israel. They say that apicture is worth a thousand words. Wecouldn’t agree more. Those that make up

our new calendar are more than just visuallystunning. They are also tangible evidence ofostomates living full and active lives.

The calendar costs £9.50 including postageand packing. All proceeds will help supportthe various services we offer including our24/7 Helpline, our extensive range of freebooklets and, of course, Tidings. So don’tdelay ordering. What’s more, every calendarcomes in its own white presentationenvelope, making it an ideal gift forChristmas!

Calendars can be ordered using the formbelow or via our online shop.

Get your Colostomy Association 2018 Calendar

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:

Tel:

Email:

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

Quantity

£

The calendar competition results are in… so prepare for your virtual holiday!

2nd

3rd 1st

C A L E N DA R W I N N E R

| 2 4 H OU R H E L P L I N E : 0 8 0 0 3 2 8 4 2 57 T I D I N G S | S U MM E R 2 017 | 2 1

✁

2 2 | T I D I N G S | S U MM E R 2 017 | WEB S I T E : WWW. CO LO S TOMYAS SO C I AT I O N . O R G . U K

R E A L L I V E S

This photograph was the overall winnerof the Daily Mail Weekend magazine’sannual wildlife photography competition.The head judge, David Suchet said: “I likeeverything about this – the colours, thetexture, the way it all blends together. Forme it’s not only the beauty of the twoyoung stoats but of their naturalenvironment.”

The photograph was taken by Rob Fearnwhose story featured on page 11 in theSpring 2014 issue of Tidings. Rob hadsuffered from bowel problems for 15 years.His life revolved around knowing where tofind the next toilet. This posed quite aproblem as he worked as a salesrepresentative and spent his working life onthe road. It also made it difficult for him topursue his hobby of wildlife photography.Tests for ulcerative colitis and Crohn’s diseaseproved negative and Rob was told he hadIBS. Then in October 2013, when he was 43,his colon perforated due to diverticulitis.When he woke up from emergency surgeryto find he had a stoma, instead of beingdevastated, he realised immediately that itwould change his life for the better.

Rob takes up the storyI didn’t have a clue what a stoma was. I hadheard of a colostomy but I assumed thatwas just something that old people had. Assoon as it all sank in, however, I was overthe moon. Not only had I survived the

operation but I could also see an end to my15 years of suffering.

I am really lucky to have found a goodcombination of products right from the startso I have never had a single leak. I get anallergic reaction to certain adhesives – evenregular sticking plasters can cause problems– so during the first couple of months Iordered samples from all the mainmanufacturers. I cut a 1" square from eachof the flanges and labelled them up. I stuckthem to the opposite side of my abdomen(so as not too aggravate my stoma site)then left them overnight. This was a safeway to test how well my skin reacted to theadhesive.

My road to recovery had begun along witha new freedom to enjoy my life. I was ableto go out for meals, to concerts and toplay golf fairly regularly without anyworries. I have changed my pouch manytimes while out and about in supermarkettoilets and even in the car when reallynecessary.

Healthwise, I still suffer from an upsetstomach from time to time but due to mystoma it’s not a big problem anymore. Isleep soundly every night whereas beforemy op I would spend many hours sat onthe loo doubled up in agony. The only slightproblem I have now is trying to maintain ahealthy weight as I am eating better thanever.

When I saw my consultant about eightmonths after my surgery I was prepared foran argument. I thought he would insist ona reversal as I realise how much mysupplies cost the NHS. Considering that Iam relatively young I assumed that theywouldn’t want me to keep my stoma dueto the ongoing cost.

I couldn’t have been more wrong. Theconsultant initially explained that thereversal operation is another majoroperation with no guarantee of success. I told him that I wasn’t interested anywayas my quality of life had improvedimmeasurably. He was delighted to hearthat and said: “OK, I will write to your GPand tell her that ‘we’ have decided that yourstoma will be permanent.” He reassured methat as I’d had a Hartmann’s procedure myremaining ‘plumbing’ is still mainly intactand, should I have a change of heart in thecoming years, a reversal would still bepossible. I asked if there was a time limit onthis, to which he replied no.

Having a stoma means I am not tied to thenearest loo and I can get out and walk formiles and enjoy the countryside. My wife,Helen, and I both have fairly stressfulcustomer–facing careers so it’s great to beable to get away from it all at the weekendsand on holidays. This freedom has helpedme to develop my hobby.

1 APRIL 2017

wınners!Smile,

you’re

The most astonishing pictures, including this magical shot of two young stoats, from our wildlife photography contest

‘Focusing’on abetter life


I have always enjoyed photography but dueto my illness before I had my stoma I wasvery restricted to where I could go; there’sonly so much wildlife that you canphotograph in the back garden! I can nowvisit nature reserves and walk out in thecountryside without any fears, or having tostarve myself beforehand.

Last year we spent a week in Suffolk andreally enjoyed visiting all the naturereserves. On one particular day we visitedLackford Lakes Reserve, well known locallyfor its kingfishers. We sat for over fivehours in the kingfisher hide and I got somefantastic shots. On the way back to the carwe came across two juvenile stoats playingon a wood pile. They were pre–occupied,fighting over the remains of a dead bird, sodidn’t appear to notice that we were therewatching them for about 10 minutes. Imanaged to get a good selection ofphotos.

In October 2016, the Daily Mail Weekendmagazine held their national wildlifephotography competition and a friendsuggested that I should enter. I sent in oneof my stoat shots then forgot all about it. InFebruary this year I was surprised to receivea call to say that, out of more than 10,000entries, my stoat photograph had beenselected as the winner in the mammalcategory. The prize was camera equipmentworth £1,000. All five category winners thenwent through to be judged for the overallprize which, to my amazement, I also won.

The main prize is a four–day trip with aprofessional wildlife photographer toSlovakia to photograph wild bears andwolves. I was absolutely delighted as Iknow I am now able to go and enjoymyself. If I had won this prize prior to myoperation I would have had to refuse it.Getting there involves a three–hour flightand a five–hour transfer from the airport.Once there I will spend up to eight hours aday in a photography hide in the middle ofthe

woods on the Slovakianmountains. I couldn’t have evenconsidered doing any partof this prior to theoperation, but now Icannot wait.

My photograph, two stoatson a woodpile, was on the cover of the Daily Mail Weekend magazineon 1 April. All the winning photographswere displayed at a freeexhibition in the StrandGallery in London for the week beginning 8 May. We were invitedto the launch party. Thehead judge, DavidSuchet, gave a verycomplimentary speechabout my winningphotograph. He is very passionate aboutphotography as hisgrandad, JimmyJarché, was one of the

original Fleet Street photographers.

We enjoyed the evening chatting with acouple of the other judges, severaljournalists and editors from the Daily Mailas well as many of the other photographerswho had entered the competition.

It was great to be able to go and enjoy theparty without having to starve myself first oroverdose on Imodium!

The positive moral behind this story is thatprior to my stoma none of this would havebeen possible. I’m now free to take upphotography seriously after being releasedfrom my fifteen–year battle with IBS anddiverticular disease and a life that revolvedaround locating the nearest loo.

R E A L L I V E S

Rob and Helen with David Suchet at the Strand Gallery exhibition

Rob’s photograph of the sun setting behind the warmemorial at Tyne Cot cemetery in Belgium selected for themonth of November in the Colostomy Association 2017

Calendar.

When people ask me why I neededemergency bowel surgery, I tell them itwas due to diverticulitis and they usuallylook puzzled and ask, “What’s that?” Thisarticle will describe diverticular disease,explain when it becomes diverticulitisand consider the management andpossible outcomes.

A diverticulum occurs when the inner liningof the bowel is squeezed out through themuscle wall which surrounds the outside ofthe bowel. Diverticula can be present insmall or great numbers. Although they canbe present throughout the small and large bowel, they mainly affect thedescending and sigmoid colon. Often theirdiscovery can be an incidental finding whenbeing investigated for something else i.e.colon cancer or irritable bowel syndrome(IBS); this is often by sigmoidoscopy orcolonoscopy, but can be by otherinvestigative tests.

There is debate about what causes thesesmall pouches or sacs. Leading opinion isthat the cause is constipation and a lowfibre diet, which is thought to increase thepressure inside the colon. The truth is thatwe don’t really know for sure, and theevidence is limited. It is likely that inpractice doctors have seen this scenario inmany patients, but it is by no means thecase for everyone. Personally, I never had aday of constipation in my life, my life wasruled by diarrhoea from my IBS, but mostlydue to the high fibre diet I ate to avoiddiverticular disease!

Who gets diverticulosis?● Approximately 50% of all people have

diverticula by the time they are 50 yearsof age, and nearly 70% of all people havediverticula by the time they are 80 yearsof age.

● Approximately 75% of people withdiverticula have asymptomaticdiverticulosis; of the 25% of people withdiverticula who develop symptomaticdiverticular disease, approximately 75%will have at least one episode ofdiverticulitis. (NICE 2013)

● Diverticular disease is rare in peopleyounger than 40 years. Disease is morevirulent in young patients, with a high riskof recurrences or complications.

● The prevalence is similar in men andwomen.

Overall, those of us who end up havingsurgery are still in the minority. One of mysurgeon colleagues said to me: “You werejust very unlucky.”

SymptomsIt is not uncommon for people withdiverticula to have no symptoms at all.

The symptoms of diverticular disease areintermittent, often cramp–like, left lowerabdominal pain, sometimes bloating, andthe pain can be eased by having the bowels

opened. Some people develop diarrhoea orconstipation, and occasionally mucus ispassed with the stool.

Diverticulitis causes constant pain in theabdomen, often felt in the lower left side,nausea and vomiting, fever, constipation ordiarrhoea, possibly blood in the stool.

Careful examination by a doctor will detectif complications may be present andhospital admission is required.

It is not clear why one person developsdiverticulitis and another does not. Indeed,why diverticulitis occurs is not fully known;there is talk of a bacterial infection occurringdue to obstruction or food becomingtrapped in a diverticulum, but it is not fullyunderstood. My personal opinion is thatthere is a coming together of events andenvironment, as yet unknown, that causesthe climate within the gut to change andinfection to develop.

Symptoms may be chronic i.e. they occuron repeated occasions over time, or acutei.e. they develop into something moreserious much sooner.

DiagnosisDiagnosis of diverticular disease and acutediverticulitis is made on the basis of adetailed symptom history and physicalexamination, including a family history(both my parents had surgery fordiverticulitis). What is found will direct the


F ROM H E A LT H P R O F E S S I O N A LS

Diverticular diseaseand DiverticulitisAlison HornerRGN, BSc(Hons) Nursing, Independent Nurse Prescriber

Alison began her nursing career at St Mark’s Hospital in London and later moved on towork in colo–rectal operating theatres. In 2013 she was diagnosed with diverticulardisease and the following year developed complicated diverticulitis and requiredemergency surgery to form a stoma. We published her story in the spring 2016 issue ofTidings. Since then Alison has had her stoma reversed and is now back at work as anAdvanced Nurse Practitioner in a GP surgery.

next stage of the investigation. Blood testscan be done to check for signs of infectionand inflammation, as well as anaemia.

Ruling out other causes of abdominal painis as important as trying to identify thecause. A urine culture should be done,especially where a fistula may besuspected. A pregnancy test will be carriedout in women of childbearing age. In anacute event, CT scan is used and alsoabdominal X–ray.

ManagementThe management of diverticular disease isdecided by the symptom history and resultsof investigative tests. For those patientsexperiencing episodes of abdominal painwith no fever or signs of infection, it isimportant to maintain a good fluid intakeand an appropriate diet.

What is an appropriate diet? One thatincludes enough fibre so that stools are softand formed. There is much debate aboutseeds, nuts and popcorn causing problems,but there is no robust evidence to supportthis and lots of anecdotal evidence to thecontrary! Fibre from a variety of sourcesshould be taken, but any foods that causeproblems avoided. Fibre supplements i.e.ispaghula husk can be taken.

It may take a while for you to find whatworks best for you; the goal is to avoidconstipation and straining, but alsodiarrhoea and urgency! A good fluid intakecan be gauged by the colour of your urine:pale yellow indicates you are drinkingenough, dark, orange and concentratedmeans you need to drink more.

During an episode of acute diverticulitis,where abdominal pain and fever arepresent, antibiotics, which will cover avariety of bacteria, are usually prescribed.Resting the bowel by taking only clear fluidsis recommended and providing symptomsdo not worsen most people can bemanaged at home. Introduction of softfoods and then a low residue diet can be

made once recovery is apparent, which isusually within 48–72 hours. Regular painrelief with paracetamol would be indicated.

If management at home is not workingthen admission to hospital would beappropriate. Whilst there, intravenousantibiotics and pain killers can be given,plus scans and X–rays can be undertaken.Patient’s blood pressure, pulse,temperature, pain levels and bowelmovements are all monitored and bloodtests carried out. If this conservativeapproach to treatment is successful and thepatient improves then they will bedischarged home with advice on diet andoral antibiotics (tablets).

SurgeryThe need for surgery is decided upon on anindividual basis, with discussion betweenthe surgeon and patient. An evaluation ofthe number and severity of episodes, thepresence of any complications, any pre–existing health problems, the patient’s ageand the impact of the disease all need tobe evaluated, along with the risk of majorabdominal surgery.

Ideally, all surgery should be carried outelectively, and generally no sooner thanfour to six weeks after an acute episode.

Discussion with the surgeon about whetheran open (laparotomy) approach or whethera laparoscopic approach (keyhole) can beused, will take place. Where possible, thekeyhole approach is favoured due toreduced wound pain, infection and aspeedier recovery post–operatively. Thegoal would be to perform a resection andre–join the bowel with no need for a stoma.Not everyone having surgery fordiverticulitis ends up with a stoma, it isusually only those patients who havedeveloped complications.

Patients with complications such as aperforated abscess, bowel obstruction,peritonitis, overwhelming sepsis and failureto improve with conservative managementwould require emergency surgery. This isdone via a laparotomy and a Hartmann’sprocedure is performed whereby thediseased colon is removed, the lower end(rectum) is closed, and the other endbrought up through the abdominal wall toform a stoma (colostomy).

Having a Hartmann’s procedure fordiverticulitis is considered a cure, even ifdiverticula are still present in other parts ofthe bowel. This is because problems withthese remaining diverticula is very rare andthe most vulnerable area has beenremoved.

Reversal of Hartmann’s is an option forsome patients, and my own surgeon toldme that approximately 30% of those whohad a Hartmann’s procedure would bereversed. Reversal is no mean undertaking–it is technically challenging for the surgeonand more major surgery for the patient,with a chance of a temporary ileostomyuntil the join in the bowel is well healed. Anin–depth talk with the surgeon is vital, aswell as a full assessment of the bowel, priorto any decisions being made.

In summary, diverticular disease is verycommon, but on balance it is a relativelysmall number of patients who end up withcomplications and a colostomy. ■


F R OM H E A LT H P R O F E S S I O N A LS

Definitions● Diverticulosis – diverticula are present without symptoms.

● Diverticular disease – diverticula cause intermittent lower abdominal pain withoutinflammation and infection.

● Diverticulitis – diverticula become inflamed and infected causing marked lowerabdominal pain usually accompanied by fever and general malaise. Occasionally itmay be accompanied by large rectal bleeds.

● Complicated diverticulitis – diverticulitis accompanied by formation of an abscess,perforation or fistula. (NICE 2013)

Reference

National Institute for Health and Care Excellence (2013)Clinical Knowledge Summaries: Diverticular diseasehttps://cks.nice.org.uk/diverticular-disease

Colon with several diverticulaNormal colon

rectum

ascending colon

descending colontransverse colon

sigmoid colon

diverticula


R E A L L I V E S

For ten years, I was told that I had IrritableBowel Syndrome (IBS) and prescribedpeppermint capsules. The bloating, windand irregular bowel movementscontinued and I developed painful spasmsin my lower tummy. At A&E an X–rayshowed massive constipation and I wasadvised to continue with the laxatives.Then I saw a GP, new to the practice, whoarranged blood tests and an ultrasoundscan. When they provided no answers, shereferred me to the colorectal departmentat the hospital. The first colonoscopy hadto be abandoned because it was toopainful so I was given a CT scan. It showeda severe narrowing of the sigmoid coloncaused by diverticular disease.

In January 2016 I was admitted to hospitalfor a laparoscopic sigmoid colectomy as thebowel had narrowed to a severe degree andwasn’t functioning very well. By now, as wellbloating and severe spasms of pain, I wasalso experiencing frequent bouts ofdiarrhoea so spent increasing amounts oftime tied to the bathroom and was feelingvery low.

Prior to the operation, the stoma nursevisited me to mark my tummy. At this stage,it didn’t really impact on me that I wouldhave a stoma. I was focusing more ongetting prepared for the operation. It wasenough to concentrate on as the bowelprep was not a pleasant experience!

When I came round in the recovery room,even though I was still drowsy, the firstthing I asked was: “Is it a stoma?” The nursesaid it was, but I was so relieved it was allover I didn’t think too much about it. It wasseveral hours before I peeped beneath theblanket to have my first curious look at mystoma. Not having been shown any picturesbeforehand, I didn’t know what to expect.First impressions were that it seemed largeand very pink.

It took two or three days to start working butI had no problems or pain. The stoma nursecame to examine me and change the bag.

I soon learnt to care for my stoma myself so I could go home. I can honestly say I accepted my stomaimmediately which amazed meas I really hadn’t wanted one tobe necessary. For the first fourweeks, the stoma nurse cameto see me and after that I couldvisit her in clinic. As youprobably know, the size of astoma changes in the weeksfollowing the procedure so shechecks in case it is necessary toalter the aperture in the pouch.Mine was 35mm after theoperation but shrank to 30mmand has remained that size.

At home I got myself a routinefor cleaning my stoma,preparing my skin andapplying the bag. You do getquicker but it isn’t a race andeven now I take my time tocheck I’ve done it properly as I dread leaks or accidents.I’ve had one or two nearmisses but thankfully nothingdisastrous.

I’ve learned to cope with unexpectedsituations and ‘keep calm and carry on’.After a few incidents, you learn to anticipatethese and are prepared. For example, whenI was a novice ostomate the doctor wantedto have a look at my stoma; I hadn’tthought to take a spare bag with me to theappointment so he couldn’t! Wherever yougo always take spares not just bags but alsoany additional products you regularly use.

Early issues I had to deal with were skinsensitivity which caused a rash. I triedsamples of different bags and then chosethe best one for me. Because I swim, Ineeded a very reliable pouch which wouldstay stuck. My stoma nurse was very caringand helpful and suggested flange extendersfor extra security while in the water. I builtup my strength by taking regular shortwalks every day and I was back in the poolthree weeks after my operation. SometimesI find that the stoma carries on workingwhilst I’m exercising and I worry thatsomeone will notice a bump beneath myswimming costume. My ever–helpful stomanurse and husband suggested wearing apatterned swimsuit or one with a frill orwrap effect. As my pool is on the cool sideI often wear a rash vest.

In April 2016, three months after myoperation, we went on a two–day break toChester to celebrate our weddinganniversary and I managed quite well. Imade my husband stop part way there tocheck, yet again, that I had all my stomaproducts. We had to take all the cases outof the boot, check, then reload! I’d already

Pathway to aColostomy:Diverticulitis

Lorraine and her stoma nurse at the awareness day

Lorraine and her husband celebrating their wedding anniversary ona mini break in Cheshire

R E A L L I V E S

checked I had everything but this was myfirst time away from home and I needed tobe sure. We then went on four other shortbreaks and I grew more confident abouttravelling.

Later that year, my stoma nurse invited meto a stoma awareness day. This wasworthwhile as I talked to some interestingpeople and we shared our experiences. Ispoke to company reps about problemsand was able to order samples to try out athome. I would recommend these sort ofevents as they are informative and social.

I’ve learned by trial and error but myhusband has been good at going onwebsites for information so that too isuseful. I wish, however, that I’d had a copyof Tidings at the time of surgery as I wouldhave learned a lot from the articles andreading about other people’s experiences.In a recent edition of Tidings there was afeature on granulomas. It was about twomonths after surgery when I developed twotiny raised areas around my stoma; theybled each time I changed my bag. I had noidea what they were. I saw my stoma nurseand she told me they were granulomas andtreated them with silver nitrate. This worked

and they haven’t recurred. I began wearinga seal soon after that as I had some leakageand this has helped with both issues.

I feel content with having my stoma. I’mfortunate to be the age I am and not ayounger person. I am so grateful to be freeof the awful symptoms I used to suffer andappreciate all I can do now that I couldn’tdo before. Now I’m in a routine I can planto do things rather than be tied to thebathroom for much of the day! I can’t becomplacent though as I have developed aparastomal hernia.

Now that I have a hernia, my original stomabag does not fit as well as it did, so mystoma nurse helped me to find me one thatsuits me better. I’ve also begun wearing asupport belt when I’m doing jobs and goingfor walks as recommended by my stoma

nurse. I’ve found exercises to do daily tohelp strengthen my tummy muscles toprevent the condition worsening. I wish,however, I’d known about the exercises andstoma support wear earlier as I may haveavoided getting a hernia.

It is wonderful to be able to eat normallyagain. Last Christmas was the first time inyears that I could join in and eat a variety offoods. I felt a hundred times better than theyear before; I got to see people and do stuffinstead of occupying the bathroom for mostof the day with only the radio for company.

Sometimes you hear about people whohave done truly marvellous feats such asmarathons, sky jumps, etc. But we have allachieved so much already just to havecome through and accept our stoma.

Lorraine

Back swimming again

Medical Terms Explained

Laparoscopic surgery: A procedurecarried out using an instrument called alaparoscope, which allows the surgeonto access the inside of the abdomenwithout having to make a large incision.Also known as keyhole or minimallyinvasive surgery.

Sigmoid colectomy: The removal of thesigmoid colon, the terminal section ofthe large intestine that connects thedescending colon to the rectum.



Saturday 7 October 2017

Whether it be a colostomy, Ileostomyor urostomy, the fact is stoma surgerysaves and improves lives. People withstomas work, play, have children, raisefamilies and run marathons, but stillthere is a stigma attached to havingone. We need to change this.

Colostomy Day is our opportunity to raise awareness,challenge perceptions and show the world what itactually means to live with a stoma. Whether it wasbecause of cancer, Crohn’s, ulcerative colitis, or trauma to the bowel, we need to tell people that stoma surgerymade the difference.

Join us on Saturday 7 October for Colostomy Day –our national awareness day – where super stomasare the theme. It’s time to celebrate and tell the worldjust how great they are!



Abi’s #superstoma

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

Social MediaWe want to get #superstoma trending. So please share your #superstoma on Twitter, Facebook and Instagram. You could posta 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 storyCelebrate your stoma and how it saved your life. We will befeaturing stories across our website and social media.Alternatively, why not let the local paper know or perhaps turnyour story into a blog. Let’s raise awareness of the differentissues that lead to stoma surgery and let the world know thatanybody, 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 asuperhero themed bake sale or just do good deeds for the day?If you are planning on holding an event or taking part in anactivity, then let us know. We can spread the word and also sendyou one of our Colostomy Day t–shirts. Together we can raiseawareness.

For more information, visit our website or email [email protected] 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 moreabout their super stoma stories in the run up to Colostomy Day.

After living a fit and healthy life, eating well and attending thegym regularly, it came as a huge shock to be diagnosed withadvanced rectal cancer just two months before I was 40. Duringthose first discussions about my tumour and the treatmentrecommended before surgery, wearing a bag was mentionedand I must admit I had absolutely no idea what they meant. I had simply never been aware of stomas prior to this.

It was not something I focused on during those first fewmonths to be honest, I dealt with everything just one step at atime – four cycles of chemo, a brief break before the five weekradiotherapy course started. Some of the side effects wereawful, including the sense of urgency and having accidentswhilst travelling. At the planning stage for radiotherapy it wasmade clear my colostomy would highly likely be a permanentone with no room for reversal. I felt emotional and worried,but again I didn't dwell on this or what it might mean until Ihad my visit with the stoma nurses prior to surgery. This waswhen it really hit home.

I've come to realise a lot of people end up with a stoma due toemergency or because of a chronic condition, whereas I hadplenty of time to process what was to come; personally I’m glad

I had this time to gothrough the emotions:sadness, anxiety andworry. The surgery wasperformed in August 2016,thankfully successful and I was verysurprised how small and tidy mystoma was when I saw it for thefirst time (two days later). I hadbeen so worried about dealing with it,but it was actually very straight forward andthe nurses were so helpful.

The recovery period, particularly fatigue was tough going butthe bag changes were the easiest part. Now approaching ninemonths from the operation, I’ve been trained to irrigate andreally enjoy the confidence this gives me when I’m out. I’mback in the gym doing cardio and weight training, wearingsupport underwear and definitely feeling more like myselfagain. No one would know I have a bag unless I choose to tellthem, and in comparison to the symptoms and difficulties Ifaced pre–op I am much happier now. I’ll be wearing my bikiniwith pride this year that’s for sure!

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The diagnosis thatchanged our lives

R E A L L I V E S

It started in the outpatient’s clinic at ourlocal hospital in 2009. I remember thatsick feeling, shock and disbelief, when Iheard the surgeon confirm the diagnosisthat George, my husband, had rectalcancer and would need to have apermanent stoma.

George had never heard of a stoma. Iwanted to reassure him that it would bealright, but everything seemed souncertain at the time. The surgeon saidGeorge could not have surgery to get rid ofthe tumour straight away. First there hadto be a course of radiotherapy along witha course of chemotherapy to shrink thetumour. Eventually George had surgeryand after this came another course ofchemotherapy to make sure all the cancercells had gone.

Normal life and routine all changed, as thepriority and focus was on treatment andhospital appointments. George had sixweeks of radiotherapy, and on a Fridaymorning, we would go to a café atClatterbridge and celebrate getting throughanother week, with a big plate of toast andtea; it was our toast party. Looking back, Ido not know how we came through it all.

When it was all over we just wanted to getback to a normal life as soon as possible.Could we still go swimming? What wouldhappen if the bag leaked or came off?Could we go on holiday? We now knowthe answers to these questions, but at thattime it was all undiscovered territory. Thestoma nurse at our hospital was helpful,and Tidings magazine is a mine of usefulinformation.

For our first weekend away, we stayed inbed and breakfast accommodation. The binin the carpeted bathroom was covered infloral fabric and trimmed with lace. There

was no way we could have deposited a poobag in there. We solved our problem bytaking it with us when we went out anddisposing of it in a dog–waste bin. Beforegoing away, I purchased a waterproof coverfor the bed just in case of any leaks. I do notknow if the landlady discovered it and, ifshe did, what she made of it, but it madeus feel better.

We celebrated our silver weddinganniversary; it was a very happy occasion,with all our family around us for a churchservice and a lovely meal at a hotelafterwards. We also attended ourgrandson’s wedding, which was a lovelyfamily celebration. At this time my husbandwas experiencing some urine retentionproblems and had to have a leg bag, but itdid not stop him dancing.

George loves the sea. Years ago, he used togo sub–aqua diving. Now that he has astoma he thought he would try snorkelling.This was during a long weekend break inConnemara on the Wild Atlantic Way on thewest coast of Ireland. We stayed at a lovelycountry hotel but did not take a waterproofbed cover this time.

As the Atlantic is very cold, George neededa wet suit. On each of the two days wewere there he did an hour session ofsnorkelling, duck diving down to ten feetunderwater. I must confess I was a bitconcerned, as the waves were a bit choppyand he was on his own, except for me onthe beach keeping an eye on him. He reallyenjoyed it and there were no problems withhis stoma bag.

Well there was no stopping George now.Next it was kayaking. We hired two sit–on–top kayaks on the river Dee in Chester, tosee how we got on. It was a bit outside mycomfort zone, but we both enjoyed theexperience. George went on to buy a sit–on kayak, and has taken it on rivers andBala Lake. Last year while we were inNorth Wales he took it out to sea and gotrolled over twice in the surf and still didnot experience any problems with hisstoma bag.

They say to have lovely memories, you haveto create lovely experiences, I think wecertainly did this together. Oh, did I forgetto say George has also climbed MountSnowdon even though he has arthritis inboth knees and last year it was camping,with a new blow–up tent!

George, now six years in remission, says: “Ifit wasn’t for the love, caring, understanding,and encouragement of my wife, Margaret, I would not have had the willpower to carryon and be where I am now.” ■George going snorkelling in Connemara

George kayaking in North Wales

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



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L I V I N G W I T H A S TOMA

I must admit I’ve always felt a sense ofsome impending doom, like I knew thatone day something bad would happen tome. Was it just my mental health, thedarkness of negativity translating intoone of the worse scenarios I couldimagine? Probably. So, it didn’t reallycome as a shock when, at a follow–upappointment, the colorectal surgeon, MrKrishna, explained that the growth in myrectum was cancer. Sitting next to me, myfiancé looked blank. My mum brokedown immediately – even at 38 I was stillher baby. I found myself comforting her,telling her things would be OK and we’dget through this.

As the treatment plan was explained I satlike a good pupil nodding at the rightmoments and answering the questionsbeing asked of me. I wasn’t that worriedabout the prospect of early menopause,chemo/radiotherapy or even the canceritself. And then I heard a new word.Stoma. Apparently, I would need one ofthese, hopefully temporary but quite likelypermanent. As the word colostomy wasspoken, it started to dawn on me; I’ddefinitely heard that word before. I keptnodding, smiling and making jokes as Iusually do. But inside I was screaming. Icould feel the horror rising, a feeling ofcomplete terror and hopelessness. I took

the take–home pack containing the fakestoma, colostomy bag and gel crystalsfrom my new colorectal specialist nurse,Lisa. Thank you. No problem. See yousoon.

That day the tears didn’t come. I had toexplain to the rest of my close family andfriends that I had this cancer I’d neverreally heard of. I felt guilty for puttingthem through this. But where were myemotions? The years I had spent cryingand anxious for no apparent reasonbelied this new calm me. It was cancer. Idaren’t think about that horrible‘colostomy’ word.

Stoma and Sanity

I’ve never been oneto reach out when

I needed help. I havebeen living with poormental health for the

past 20 years (I’mnow 40), rarely

asking for help frommy loved–ones.

And then along came a stoma.


L I V I N G W I T H A S TOMA

The next day I stuck on the little rubberstoma I had been given. I added the crystalsto the bag and felt them turn into sludge,attached it to the stoma and cried.

Finally. Something I could really get upsetabout. I sat down and hated the feeling of thebag. I was heartbroken. I tried to stand upand it felt as though this alien thing on mystomach was going to explode as I bentdouble. Honestly, I wanted to die. I didn’twant to poo out of my belly – I would rathertake my chances with the cancer than haveto deal with this thing of nightmares. One dayI opened up to my sister–in–law: would I everfeel normal again? Ever positive? She told meshe knew I was going to cope, in fact she saidI would ‘totally own it’. I just lightheartedlyagreed and said she was probably right.Inside I wondered how she had the cheek tosay that to me, it was my life being ruinedand she had no idea how it felt. I continuedon with my treatment plan, all the whileslowly and secretly giving up on life.

I led a robotic life right up until after mysurgery. Just before, I was told that therewas no chance of a reversal, this wasgoing to be for life. Any hope of goingback to ‘normal’ was dashed on the rocksof my tumultuous brain. I was in intensivecare for five days after surgery, dosed upon painkillers, not fully aware of mysurroundings. It was when I got onto the

ward I started to feel the impact of whatwas going on. It was a dark time. I had a smile plastered on when I had visitorsbut as soon as the curtain was drawnaround my bed I sobbed myself silly. Whathad I done? Why on earth had I gonethrough with this stupid surgery? It wastoo late now, I should never have agreedto it.

At home things weren’t much better. Thefirst bag change I did on my own was anightmare. I felt faint, cried and got poo alldown me. The second time was a littlebetter and thanks to my fiancé I made itthrough. The grief I felt for the part of mybody I’d lost was overwhelming, but, astime went by, things slowly got better.

I wish I could have told myself what I knownow: That life with a stoma is Great! Iwouldn’t have believed my future self, Iwould have laughed in her face. But I’vegrown to love my stoma, or Butt Face as Inamed him (I didn’t want a sentimentalname, so I opted for a humorous one). He’sthe reason I’m alive today and I can doeverything I did before he was born.Nothing phases me anymore. I just take itin my stride, and get great laughs when Ishare funny poo stories with my friends andfamily. My mental health issues haven’tgone away, but my stoma isn’t one of thethings that set me off. Somehow my brain

decided I would cope with the big things inlife, not that Butt Face is big; he’s tiny andperfectly formed and I thank my lucky starsfor him every day.

Sometimes it all seems like a lot of troubleto get out of bed on a bad day for a bagchange. I just tell myself to power throughit. I might get angry and irritated that I haveto do it but never am I sad about having astoma. I feel blessed and grateful to be partof this amazing, awe–inspiring communityof ostomates, like I’m part of an elite groupI would never have had access to otherwise.I started filming an on–line vlog series tooffer a positive view–point to newcolostomates, because I know not everyoneis going to take to it as well as I have. Doingit has helped my mental health so muchand made me even more joyful to be a partof the gang.

So thank you Butt Face, thank you to mysurgeon, Mr Krishna, and to Lisa, my stomanurse, for giving me a new lease of life. Andthank you to the Colostomy Associationfor being there, allowing me be a part ofsomething truly amazing. I’ll never lookback.

Joanna Phillips

Got Stoma? Vlogostomy on YouTube https://www.youtube.com/channel/UCGG9J0wN9141mKalSHU4DMg

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F ROM H E A LT H P R O F E S S I O N A LS

Discomfort in the rectum(back passage) can be adistressing symptomexperienced by people whohave had surgery to form acolostomy. After someoperations, such asHartmann’s procedure andloop colostomy formation, therectum will be left in placebut during other surgery, suchas abdominoperineal excisionof rectum (APeR), the rectumand anus is removed and thewound in the bottom stitchedup. In both cases, a feeling ofdiscomfort in the rectum canbe felt and this is discussedhere along with ways thatmay help to relieve thediscomfort.

Discomfort with therectum intact

Mucus build–upFor ostomates who have not had theirrectum removed, the most likely cause ofrectal discomfort is the build up of mucus.Mucus is a lubricant produced by the bowelto help the faeces pass through the system.The mucus continues to be produced in therectum after surgery even though it is nolonger needed. As the rectum fills withmucus, the pressure inside rises. Nervesnear the rectum sense this raise in pressureand send a message to the brain alertingyou to the fact that you need to empty therectum. It is in this manner that you mayexperience the discomfort of feeling theneed to open your bowels after yourcolostomy operation.

For most ostomates with an intact rectum,simply sitting on the toilet and bearingdown as if trying to open your bowels willallow the mucus to pass and will relieve thesymptom of discomfort. It may be worthdoing this daily to avoid the build up ofmucus, particularly if you find you areproducing a lot of mucus.

Some ostomates find that they are unableto pass the mucus without assistance. Thismay be because the rectum has absorbedthe water from the mucus making themucus very sticky and difficult to pass. Inthese instances, the use of glycerinesuppositories, which can effectively clearthe rectum within 10–15 minutes byirritating the lining of the bowel, may benecessary. They can be obtained over thecounter or via your General Practitioner(GP) and are safe to use on a regular basis.

Alternatively, small enemas, such asMicrolax, may be needed to help withevacuation if other methods have beenunsuccessful. These will need to beprescribed by your GP and are safe to useregularly after review by a healthprofessional. They work by lubricating thebowel and softening the mucus, which isparticularly helpful if the mucus has driedup into a plug that is difficult to pass.

If these methods fail to clear the mucus youmay benefit from using a rectal washoutdevice. You must discuss this with a healthprofessional before using to ensure that itis safe for you to do so.

Rectal DiscomfortFollowing ColostomySurgery

colostomy

rectum

ascending colon

descending colonsmall intestine

Hartmann’s procedure

rectum

ascending colon


Transverse loop colostomy

Andrew Bird RN. BSc. PG Cert.

Andrew currently works at QueensMedical Centre in Nottingham as LeadStoma Care Nurse Specialist in theColorectal and Stoma Care Department.Earlier in his career he held a post asNurse Specialist in Pain Management.


F R OM H E A LT H P R O F E S S I O N A LS

If you have tried all of these or the amountof mucus that is produced is excessive yoursurgeon may discuss with you an operationto remove the rectum. This is another bigoperation and there is no guarantee that itwill get rid of the discomfort, as you willread below, so careful consideration isneeded.

Proctalgia fugaxAnother potential cause of rectal discomfortis a condition called proctalgia fugax. It canbe caused by a cramping of the levator animuscle, which makes up a large part of thepelvic floor. Proctalgia fugax is a conditionthat can affect anyone with a rectum,whether they have a stoma or not, andusually presents itself when the personreaches the mid–forties although has beenreported in children. It is reportedly morecommon in women but this may be due tomen being more reluctant to report it. Thespasming of the muscle can be incrediblypainful lasting from a few seconds totwenty minutes or more and cansometimes be mistaken for the need to goto toilet.

Some people find that a warm bath helpsto relax the muscles although often the painwill have settled before the bath is ready.Simple relaxation techniques or rectalmassage may help until the spasms passnaturally but in some instances furthertreatment is necessary.

Exercising the perineal muscles (Kegelexercises) may also help. This should bedone with an empty bladder and involvescontracting the muscles that you use whenyou try to stop the flow of urine. Either sitin a chair or stand with feet shoulder widthapart, contract the muscles for 3–5 secondsthen release. Do this 10–15 times per setand 2–3 times per day. As it gets easier youshould aim to gradually increase the timeyou hold the muscle tight (by one secondper week) up to 10 seconds; also increasethe number up to 25 times per set. Whenyou get to this level, one set per day shouldbe enough.

If these methods fail to resolve theproblem, your GP may suggest a calciumchannel blocker ointment, nitroglycerineunder the tongue or a salbutamol inhaler totry and help but, as with all medications,these are not without potential side effectsso must be considered carefully. Forpersistent and extreme cases, a referral to aspecialist pain management service may beneeded and procedures such as localanaesthetic blocks or Botox injections couldbe considered. These are not guaranteed towork and have been known to increase thepain intensity so this must be borne in mindwhen exploring the options.

Discomfort without arectum

Having your rectum and anus removed islikely to cause you some discomfort. Manypeople that have undergone the operationsay that the discomfort experienced at theback end is worse than that in theabdomen. As with any surgical pain though,this should settle down within a few weeksafter your operation.

Phantom rectumPhantom rectum (PR) is the feeling that therectum is still there or still working after ithas been removed. First described in 1968,various studies report the incidence of PRto be between 12% and 68% (about 1 to 7out of 10 people who have their backpassage removed will experience PR).There are several symptoms associated withPR, some more frequently seen than others,and you could experience all, some or noneof them if you have had your rectumremoved. These are (most common first):

❖ The feeling of wind or faeces in therectum

❖ Urgency – the sudden overwhelmingsensation that you need to have abowel movement

❖ Muscle cramps❖ Pruritus – a severe itching❖ Pain

These symptoms can appear right after thesurgery but may develop weeks or monthslater down the line. For most people thesesymptoms will fade away. However, forabout 1 in 3 people who develop thesesymptoms they could persist for years, if notindefinitely.

It is thought that the nerves that areresponsible for sending messages to thebrain from the rectum are responsible forthe PR sensations. It may be that they havebeen damaged by the operation or a

subsequent infection or perhaps byradiotherapy or chemotherapy. Thisdamage could cause the nerves to sendtheir own messages after the rectum hasbeen removed. An alternative theorysuggests that the nerves get used todelivering the messages and continue todo so even after the rectum no longerinitiates them.

Pain that is experienced as a result of thisis called neuropathic pain. Neuropathic paincan be difficult to treat, as manyconventional painkillers such as morphine,do not work well but, if medication isrequired, over the counter medicines suchas Paracetamol and Ibuprofen are a goodplace to start (please read theaccompanying information carefully beforeusing any medications and consult your GPif you are unsure).

Other medications are available throughyour GP that may help with the neuropathicpain. Drugs that were originally developedto treated epilepsy such as Gabapentin andPregabalin are often used, as areantidepressant drugs such as Amitriptyline.However, these drugs will not work foreveryone and many people experienceintolerable side effects.

If you have been suffering with your painfor longer than three months, your GP maybe able to refer you to a specialist chronicpain clinic for other treatments to beinvestigated. A pundendal nerve blockinvolves the injection of local anaestheticand steroid given through the buttock tonumb the pundendal nerve which isresponsible for the sensations felt aroundthe lower rectum and perineum (the areabetween the anus and the genitals). Thismay relieve your pain for a few days or evenup to a few months but it is not guaranteedto work and could, in some cases, make thepain worse so careful consideration isneeded.

Complimentary therapies such as massageand acupuncture have been shown to helpwith neuropathic pain in some cases. It is,however, important to ensure that anypractitioners are registered with aprofessional body relative to their therapybefore consenting to being treated.

Rectal discomfort is not uncommonamongst ostomates following colostomy–forming operations regardless of whetherthe rectum remains intact or not. There aresimple measures that you can take to helprelieve the discomfort and in many casesthis will be sufficient. In some cases,however, medications and furthertreatments may be needed. If you havetried the simple measures and feel thatsomething else needs to be done pleaseconsult your stoma care nurse for help andadvice. ■

ascending colon


Abdominoperineal resection (APeR)

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National Key Scheme (NKS) Radar Key and Photo Identity Card

To obtain a key or a photo identity card please completethe form and declaration. Make your cheque payable tothe CA Ltd. Return all required items to:Colostomy Association, Enterprise House, 95 London Street, Reading, Berkshire RG1 4QA

(If you have any queries please contact the admin team at the Colostomy Association office via the followingmethods:

Telephone: 0118 939 1537 or Email: [email protected])

National Key Scheme - Key and photo ID card purchase

Title:

Name:

Address:

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DECLARATION: I declare that the individual named above ischronically sick, has a disabling condition or has had a bowelor bladder diversion that necessitates the use of disabledtoilet facilities. The key is for the personal use of the abovenamed and their designated carer only.

Please tick as appropriate:

I would like to receive a key for a charge of£3.50 (including postage and packing).

I would also like to receive a photo ID cardfor a charge of £6.50 (including postageand packing) and enclose a passportphotograph.

NOTE: Please send a copy of yourprescription/recent delivery note asproof of eligibility and make thecheque payable to: CA Ltd.

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Signature of self or carer: Date: / /2017

Photo ID CardThe Colostomy Associationphoto ID card is proving verypopular as it can be useful ifchallenged when entering orexiting accessible toilet facilities.

If you would like to apply for aPhoto ID card, please completethe form opposite and return it tothe Colostomy Association forprocessing with the variousenclosures listed below:

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Q

F R OM H E A LT H P R O F E S S I O N A LS YOU R Q U E S T I O N S A N SW E R E D

Q: I had my colostomy operation in April2011. I had previously had polypsremoved which were thankfully benign,then an abscess formed and I ended upwith a stoma. I also have a mucousfistula lower down.

I coped quite well and decided I justhad to get on with it as no one else wasgoing to do it for me. After about 18months the area around the fistula gotlarge and the consultant told me it wasa hernia. I went into hospital to have itremoved and closed, but unfortunatelywhen I was given the anaesthetic I hada cardiac arrest. I came round quicklyso no heart damage but of course I wasleft with my hernia. As I am now 87 theywon’t risk another operation.

Now I read a lot about parastomalhernias around the stoma but not aboutthe one I have, so I just wondered ifanyone else had this problem.

A: A mucous fistula is still a type of stomaand therefore we would treat it as such.When a section of bowel is removedthis leaves two ends of bowel, one isbrought to the skin surface as the stoma

and the other end can either be closedand left inside the abdomen or can alsobe brought to the surface as a mucousfistula. This fistula can discharge mucusand often a small pouch or a stoma capis used to manage this.

As you have been told that surgery isnot possible another option for youwould be an abdominal support. Thismay help to prevent the herniaworsening and also help to ease anydiscomfort. Your local stoma care nursewill be able to assist you either bymeasuring you herself for the support orreferring you to either the hospitalorthotics department or a companywho provide supports.

Q: For the first eight years after theoperation to form my colostomy I hadno bother, but for the past three yearsthe problem with passing mucus frommy rectum has become steadily worse.

My consultant doesn’t wish to do areversal operation, mainly because ofmy age (81) and my state of health. For

the past 18 months, I have had bowelirrigation [of the rectal stump] threetimes a week using the Qufora system(warm tap water) performed by ourdistrict nurses. This is a great benefit butthe results don’t last very long andevery night after about three or fourhours’ sleep I am awakened by pain inthe lower back or pains in the legswhich result in having to get up andspend the night downstairs trying tosleep upright in an easy chair.

There are other symptoms during theday but as soon as I feel a movement of mucus everything is pain anddiscomfort–free. I very rarely have anykind of symptom when walking around.

Any advice would really be appreciated.Is there anyone who has experiencedsimilar problems with mucus after acolostomy?

A: This can be quite an irritating problem.You do not describe what the othersymptoms are and therefore it may beworth a review by your GP to see ifthere is anything else he can offer withregards to these.

With regards to the feeling of needing toempty the rectal stump there are acouple of options. The first is to increasethe frequency of the rectal irrigation orto get the district nurse to use a smallenema given rectally on a regular basis;this would need to be prescribed. Orthere is an option of a rectal plug if youare finding you cannot control thedischarge but from how you describe itthis is not a problem. I hope youmanage to find a solution to managethis problem so that your quality of lifeimproves.

Q: I had rectal cancer which wassuccessfully treated with radiation,chemo and an anal resection three

Julie Rust RGN. Dip, N. MSc.Clinical Nurse Specialist

Stoma/ColorectalRoyal Stoke University Hospital

University Hospitals ofNorth Midlands NHS Trust

Julie Rust became Tidings Nurse inDecember 2004. She has answeredreaders’ letters and e–mails in everyissue which has been published sincethen. We look forward to many moreyears of publishing her very soundadvice.

Your medical questions about stomacare management are always welcomeand important to us.

DearNurse


mucous fistula

colostomy

ascending colon



F R OM H E A LT H P R O F E S S I O N A LS YOU R Q U E S T I O N S A N SW E R E D

years ago. It took a long time to recoverfrom the surgery with a great deal ofdiscomfort during this period. I couldnot sit normally at all for about fourmonths. I assumed that once thewounds were healed this discomfortwould pass but sadly I still have theproblem and my doctors seem unableto advise. They tell me it is notsomething they have come acrossbefore and they don’t seem veryinterested.

I realise it may not be resolvable, butwould very much like to know thereason for it. Walking and sitting remainextremely uncomfortable – and it seemsto be getting worse not better. Judgingby the size and thickness of the externalhorizontal scar that I have on mytummy I wonder if it could be caused bysimilar scarring which is internal. Thedoctors don’t seem to think this is likelyand they keep mentioning ‘phantomanus’ syndrome. I am sure it is not this.The feeling is as though I have a verylarge cork or tampon, stuck half in halfout of where my anus was. Physicallywhen examined externally, there isnothing obvious to see or feel, but the

sensation is very real. And it makes ithard to sit normally or walk around forlong. Since I work full time and ampretty busy this is a tiring symptom tohave.

A: This is difficult to advise on as I don’thave access to your medical notes andany investigations you may have haddone. If you have not had any

investigations to try to identify the causeof this problem then it may be worthdiscussing it with your consultant again.

If there is no obvious cause then areferral to a specialist pain team may bebeneficial. I have had patients with thistype of problem within my area andthey have been able to find a solutionto manage this, but it has been a longjourney for them.

Unfortunately, this is not a problem that can be easily treated as everyone is different and it may take severalattempts to identify the problem andthe cause and therefore the treatmentplan. I hope you manage to find asatisfactory solution. ■

If you have a general medical questionor a query about stoma management:

E–mail:

[email protected]

or

Write to:

The EditorColostomy AssociationEnterprise House95 London StreetReading RG1 4QA

Your questions will be passed on toJulie Rust. Although Julie is not able to reply directly to you, her answerswill be published in the next issue ofTidings.

Julie’s answers to questions aboutissues such as leakage, rectaldischarge, or managing hernias orretracted stomas etc. may not only helpyou, but may also provide advice andreassurance to others experiencing asimilar problem.

Emptying a drainable bag

In the last issue of Tidings, a reader who had problems bending his knees asked ifanyone had any suggestions to make it easier to empty his bag into the toilet. Wereceived three replies:

Regarding the reader’s difficulty in emptying the bag when sitting on the toilet. I hadthe same problem until I realised that it would be much easier if I sat in a reverseposition. In other words, face the back of the toilet.

I have had my colostomy for 20 years and have rheumatoid arthritis. I too was havingthe same difficulties with emptying my bag but have found an excellent solution. Ipurchased a shower stool and adjusted the legs to the height of the toilet. I can thensit comfortably facing the toilet to empty my bag. I have had no more problems andwhen I go away, the shower stool is the first thing that goes into the car.

I also have arthritic problems in most of my joints. I have a fold up stool and I put theedge up against the toilet bowl and sit facing the toilet so that my pouch dangles insidethe bowl. This way I don’t have any mess on myself or anywhere else except where it’ssupposed to be.

Do you find it difficult to drink bowel preparation solutions?

A suggestion from one of our readers

I’ve had Crohn’s Disease for over 20 years and a permanent colostomy fornine years. The day before I was due to have a colonoscopy examination, Igot really worked up and worried that I was not going to be able to drink theMoviPrep to clear out the bowel.

This would have meant that I would not be able to have a colonoscopy whichwould lead to more pain and discomfort as my Crohn’s disease was active.My consultant said that during the colonoscopy he would be able to take abiopsy which would help him to plan the next move. It was essential for meto drink the MoviPrep along with plenty of clear fluids to get the best results.

MoviPrep can be mixed with fruit squash (not blackcurrant as that stains thebowel) 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.

You can buy Volvic juice in most supermarkets or even corner shops. Thereare a few flavours to choose from: Orchard Apple, Sunny Orange andLemonade. There is also Berry Medley but due to the colouring I would avoidthis one.

When making up MoviPrep, instead of adding sachets A and B to one litre ofwater, add them to one litre of Volvic juice. It comes in one litre bottles whichis perfect. Once mixed you can start drinking it straight away or place it in thefridge to chill until you need it.

It used to take me hours to drink 250ml but when mixed in this way I drankthe full litre within the hour as it tasted fine. You still need to drink clear fluidsas you would when mixed with water.

I assume Volvic will work with other similar bowel preparation such as KleanPrep and Picolax. It was my consultant who suggested I contact supportorganisations for people with bowel conditions to share this suggestion sotheir members could benefit too.

Julie says: “I’ve not heard of using Volvic, so I would advise patients to check with theirown endoscopy unit when they are given the bowel preparation. It is also important tomake sure they don’t use black or red berry juice.”

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YOU R L E T T E R S A N D E –M A I L S

Dear EditorI’ve recently had a very nervous few weeksthrough taking part in the Bowel CancerScreening Scheme. Thirteen years ago,when I was first sent the kit I contactedthe screening centre and explained I had a stoma. They said that made nodifference and I could do it anyway. I did,three or four times, with no problems andno nasty surprise – till this time, whenthey found ‘abnormality’ in the first pack.They sent another, which was clear, thenanother ‘to be sure’. That time, there wasapparently too much specimen, so theycouldn’t assess it – so they sent a fourth,which was when I ‘blew a gasket’ andcontacted Norfolk & Norwich Hospitalwho are going to bring my nextcolonoscopy forward to two years insteadof five to ‘set my mind at rest’.

A nasty few weeks, I could have donewithout, but people need to be madeaware that stomas bleed easily and theblood can as easily ‘contaminate’ thespecimen. Having spoken to Norfolk &Norwich Hospital, here’s the update: TheOncologist and Colorectal Department saypoo–stix aren’t necessary for stomapatients, who are followed regularly byfive–yearly colonoscopies.

Judith

Editor’s note: If your colostomy wasformed for a reason other than cancerand you are no longer followed up by thehospital and/or do not have regularcolonoscopies you are advised to takepart in the bowel cancer screeningprogramme.

Dear EditorI have been interested to read variousletters concerning overseas holidays andthe subject of travel insurance. I had abowel resection in 2000 when I was 58and have been an ostomate ever since. Ittook some time to come to terms with the

new ‘way of life’ but in the past few years Ihave travelled extensively around the worldwith no ill effects from my condition. Oneor two tricky moments along the way I mustadmit but overall no problems and nothingthat would deter me from travel, albeit Iwould think twice about venturing to somedeveloping countries mainly due to theirlack of ‘facilities’.

I have been to the Far East, Australasia,Europe, the Med, the Middle East, all overAfrica as well as the USA, Canada, Russia,Cuba, Mexico and the Caribbean. I havemet several people who travel withouttravel insurance, saying it would be toocostly for them to take out; this seems afalse economy to me as should anythingbefall these folk then someone has to footthe bill!

I experienced the perfect example of havingthe necessary insurance when last Aprilwhilst on a cruise from Japan to Hawaii Ibecame ill on Big Island, an excruciatingstomach ache that developed with no priorwarning. I had to get back to the ship’sdoctor as fast as possible and afterexamination and an X–ray I was bookedinto the Hilo Medical Centre on the island.My wife and I had thirty minutes to clear thecabin as the ship was due to sail. Thankfullythe hospital was a very up–to–date facilityand the doctor/surgeon who saw me wasabsolutely brilliant.

After further tests and X–rays I underwentan emergency operation that lasted overthree hours and it was discovered I had avolvulus of the small intestine, that is asection that was badly twisted, gnarled andabout to burst. Just over four feet ofintestine was removed, I was stitched upwith huge staples and given a private roomwhere I remained for six days whilst recuperating and receiving expertAmerican care.

The insurance company looked after mywife, accommodating her in a nice, four–

star hotel overlooking the lagoon andsome of the kind nurses took to visiting,taking her shopping, swimming and tolocal restaurants. When I was dischargeda flight, business class, was arranged toLos Angeles and a further business classflight from LA to Heathrow. On arrival Iwas met by a chauffeur–driven Mercedesthat drove us home to Cornwall – Someservice! It didn’t cost me a penny and ontop of that we were able to reclaim thefees for the remaining lost four days ofour cruise and three days in SanFrancisco. I was happy to be assured thatmy condition had nothing to do with mebeing an ostomate and no reason couldbe given for the volvulus occurring.

So, my advice to anyone travelling, don’tforget your travel insurance!

Best WishesAlan B

Dear EditorRe: Ordering stoma supplies.

Having assisted my wife (as her carer) forseveral years I have been involved in themonthly stock control and ordering on herbehalf and have to admit it has not beenan easy process.

Unfortunately, the GP’s surgery combinedall her stoma items together withmedication on one repeat prescriptionwhich did cause some problems, until sheordered medication and stoma items onseparate days each month.

Favouring the ‘DIY’ method, we collectedthe repeat prescription for stoma care,sending it off in a prepaid envelope to thesupplier; a local pharmacy collected hermedication prescription. This was workingwell, apart from the GP’s issuing the fullprescribed monthly amounts for stomacare, leading to oversupply. This maybe isappropriate for medication, as the

Readers’ writesDo you have a story to tell, experiences or concerns toshare with other ostomates, issues to raise? Maybe youhave comments and suggestions about Tidings.Write in or e–mail us today. The editorial team looksforward to hearing from you.

Rosemary Brierley

CONTINUED ON PAGE 44, COLUMN 1



recommended dosage/course shouldnormally be adhered to. However, as mostostomates realise quite early on, no oneday is the same and usage varies frommonth to month.

I did try to avoid this happening by makingup a separate printed list specifying mywife’s required amount of stoma careproducts for that month, but this wasmainly ignored. We then tried missingcertain items completely off the repeatprescription list, if we considered therewere sufficient in stock until the followingmonth, and this seemed to be workingwell, avoiding a waste of NHS resources.

Then the surgery decided late last year to introduce the NHS ElectronicPrescription Service (EPS) and stoma careordering became chaotic once again. Wefound that, after the initial settling downperiod, EPS works well with medicationrepeat prescriptions sent electronically to our designated local pharmacy butstoma care has been fraught withproblems. In particular, EPS cannot order‘complimentary’ items from the supplier,and we cannot make a physical check tosee if correct items/quantities have beenlisted. This has led to over ordering whena repeat prescription was accidentallyduplicated without our knowledge andonly discovered when the courier arrivedwith a very large box! Out of desperation Ihave typed in a highlighter “please don’tforward to supplier”, on to the repeatprescription list, and so far it’s been 50%successful!

I really think that EPS is a good method inreducing time and form filling for thepatients and NHS staff, but it needsmodifying to work with repeatprescriptions for stoma care.

AG

Editor’s note: Delivery companies andpharmacies (if they dispense stomaproducts in the normal course of theirbusiness) must provide Essential Serviceswhich includes providing a reasonablesupply of supplementary items (disposablewipes and disposal bags) so these do notneed to be included on the prescription.Other complimentary items need to berequested by contacting the deliverycompany direct.

Dear EditorI have had a stoma for almost two yearsand early on was told that warming thepouch increased adhesion. Laying thepouch on top of the radiator certainlyhelped to produce a good seal.

Then we had the bathroom revamped and atowel rail was put in to replace the radiator.It was after that I noticed a problem, just nowand again, with pancaking, where waste isconfined to the top half of the pouch.

I realised then that I had been laying thepouch over rather than along the rail,causing an internal weld to take place. NowI place the pouch in a towel and drape italong the top of the rail.

David

Dear EditorI applaud the work of the ColostomyAssociation and your particular, recent ‘Notevery disability is visible’ awareness–raisingcampaign.

I would like to suggest an easy, pragmaticapproach for people – who do not have anoutwardly obvious disability – when usingaccessible facilities and one which maypre–empt any adverse comment or irritatedmuttering if you do.

For just £3.50, I obtained from theColostomy Association a RADAR key which

I carry with me at all times. Not allaccessible loos require a key, but whetheror not they do, I take the key out of mybag and brandish it as if I expect to haveto use it (and look surprised when I don’tneed to!). I’m sure this helps to silenceany critics who either have obvious, visibledisabilities themselves and/or those whocynically suspect me of avoiding the usualqueue for the Ladies.

Most appliance suppliers offer a ‘Need toUse the Toilet urgently’ card and theColostomy Association’s Photo ID Cardwould be even more convincing but it’s asad indictment that solutions like this arenecessary. You shouldn’t have to prove orexplain that you need an accessiblefacility.

If challenged, my rehearsed answer, if I ever had to give it, goes something like:“I have a colostomy as the result ofemergency surgery which saved my life.I would rather not have it and I wouldrather not have to use a Disabled loo. I’msure you would feel the same”.

Finally, I notice in many public places thatnew toilets are being built as individual,larger cubicles with hand washing facilitiesinside the cubicle. Perhaps the day willcome when this will be the norm and thelarger accessible loo becomes forwheelchair users only.

Best wishesSue

Dear EditorI have read Tidings over the past few yearsand realise that having bowel cancer is notthe end of the world. There have beenmany encouraging stories from readersand I have taken heart from them. Myoperation took place some 12 years ago.The cancer spread to my lungs, butfortunately I recovered and just have

Readers’ writesCONTINUED FROM PAGE 43, COLUMN 3

Designed by Ursula Naish

For further information please Contact – Ursula Naish, 9 Oast Meadow, Willesborough, Ashford, Kent TN24 0AS Tel: 01233 640 863 Email: [email protected]

Ursula Naish designs and produces pouchcovers and waterproof mattress andwheelchair covers.

As Secretary of the UA Kent Branch sheoffers this service to raise funds for herlocal group.


regular annual checks. I have not climbedEverest or jumped from an aircraft, assome of your readers have, but have flownon Concorde, joined in the Mardi Gras inNew Orleans, sung with Tom Jones andShirley Bassey at Cardiff Arms Park andtaken holidays abroad on my own sincemy wife died.

Your advice and tips regarding flying andcustoms procedures have beeninvaluable. I have always used drainablebags and have not had any problems,apart from the odd near miss – well, whohasn’t?

There are certain foods like chillies andcurries, which I like and was told to avoid,but I must confess that after a few years I decided to risk it and give it a go andreally enjoyed them. No ill effects, but I appreciate that we are all different andothers may not be so lucky.

So life has gone on as usual, until thisyear when I was admitted to hospitalwith a urinary infection. After threeweeks, I was discharged with a catheterfitted. Since then I have not been abroad,but have not given up hope, even thoughI am now all bags and tubes and am 91years old.

Soon after I had my op, I started writingmy autobiography and last year it was

published on Amazon Books. I am surethat many of your readers will read thisand think to themselves – I may not havethe courage to go on safari or swim thechannel, but I could write a story of mylife. As they say “there is a book ineveryone.”

Geoff

Dear EditorHow about this for an embarrassingmoment? I was getting ready to go outand put on my slightly furry coat?Unbeknown to me, my stoma bags werewaiting to be cut, on a shelf behind me. I said goodbye to my husband, and set offfor an afternoon shopping. I spent an hourin Sainsburys, had wander around mylocal town centre, finishing up in Marksand Spencer. I noticed two young girlsquite close to my back but didn’t think toomuch of it.

When I arrived home, my husband had aweird smirk on his face, and took myshoulders and turned me around in frontof the mirror. OMG, to my horror I had notone, but two stoma bags Velcroed to mycoat. I’d spent the whole day with twobags hanging off my back. So manypeople must have seen and probablyhadn’t a clue what they were. I nowunderstand why the two girls were soclose behind me. And not one person toldme. Nothing embarrasses me now andmaybe a few people had a laugh that day.It certainly made mine.

Moved by something you’ve read inthis issue of Tidingsmagazine? Do youhave an issue that needs addressing oran experience you’d like to share withour readers?

The Colostomy Association regularlyreceives correspondence from supportersacross the UK who would like to sharetheir thoughts, experiences and personaltips.

All letters and e–mails are considered bythe editorial team who decide which willbe published in Tidings magazine.

If you’d like to send a letter to beconsidered for inclusion on the Readers’Writes page please send an e–mail to:

[email protected]

or a letter to:

The EditorColostomy AssociationEnterprise House, 95 London StreetReading RG1 4QA

Please make sure you include your fullname and address and telephone numberso we can contact you. Additionally, pleasemention whether the ColostomyAssociation has permission to publishyour letter and whether you would like usto use your full name or just your firstname. In the interests of confidentiality, ifyou do not give us permission to use yourname we will publish only your initials.

Please Note: Before acting on suggestionsfrom other ostomates you are advised tocheck with a doctor or stoma care nurse thatthis course of action is suitable for you.

Readers’ writes We want

to hear

from you

Not a day goes by without some mentionin the news about the civil war in Syria.The conflict has been ongoing for morethan six years now and, as with mostwars, the civilian population has sufferedheavily. Aside from the tragic loss of lifeand injuries reported in the media, thecountry’s infrastructure has collapsedand its national health system has fallenapart. This has included the destructionof hospitals and clinics, making access to basic healthcare difficult, if notimpossible, for most citizens.

Just like the UK, Syria has a large ostomatecommunity. Earlier this year, we got in touchwith Hand in Hand for Syria to see if ourStoma Aid Project could help. Hand in Handfor Syria is a UK registered charity that delivers

humanitarian aid to Syria on behalf ofinternational non-governmental organisations(NGOs) and governments who do not haveaccess to the country. They have over 300 staffon the ground, working in some of thecountry’s hardest hit and most difficult toreach areas. Over the past six years they haveestablished 8 hospitals in Syria as well assupporting more than 20 clinics and othermedical facilities, which they supply withmedicines and medical consumables donatedin the UK. In 2015, this led to 144,467 patientsreceiving much needed treatment.

In April we sent our first Stoma Aid shipmentto Hand in Hand for Syria. This comprised 60cartons, containing a total of 25,000 stomabags cut to fit a variety of stoma sizes, alongwith sprays, wipes, creams, wound dressingsand bandages, underwear and urostomynight and leg bags. These supplies have nowbeen received and are being distributed toostomates via the hospitals that the charityruns and a further 80 cartons will be sent atthe end of May. As you will know from ourprevious Stoma Aid reports, help of thisnature changes lives. So please continue todonate. See below for details.

How youcan make adifferenceYou can help make a difference tothousands of people across the worldwho cannot afford stoma supplies byeither donating supplies or making afinancial donation. Please send suppliesyou genuinely cannot use to Stoma Aidat the following address:

Dean PhilpsStoma Aidc/o Stone Logistics/PRS LimitedLorne MillLorne StreetBoltonBL4 7LZ

The cost of sending unneeded supplies to Stoma Aid canbe reduced by using Hermes which has over 4,500collection points across the UK. Prices start from as littleas £2.70 per parcel and more details can be found aboutthe locations of their Parcel Shops on their websitebelow (or by telephoning the Colostomy Associationoffice with your postcode):https://www.myhermes.co.uk/parcelshop–finder.html

DO NOT be tempted to over–order or over–stock your supplies withthe idea of sending the surplus to Stoma Aid. We cannot acceptdonations on this basis. Please only send items that you haveordered in good faith but find that you can no longer use. As we allknow, helping the NHS save funds is vital and this in turn could alsohelp prevent GPs questioning the quantity of stoma bags required.

Haven’t got any supplies to donate but would still like to make adifference? Why not make a financial donation to Stoma Aid?(Please make all cheques payable to Stoma Aid and send them tothe Colostomy Association, Enterprise House, 95 London Street, Reading RG1 4QA.

Stoma Aid will accept the following:

All types of stoma appliances for adults an

d children including:

● Closed bags

● Drainable bags

● One piece bags

● Two piece bags (must include matching baseplate/flange)

Additional Products (which must all be at

least 6 months in date):

● Absorbent gels● Night/drain bags

● Adhesive remover wipes, sprays and swabs ● Pastes/creams

● Aerosols (spray and pump)

● Powder

● Cleaning wipes, barrier wipes and dry wipes

● Seals, rings and washers

● Dressings and bandages

● Support belts, briefs and stockings

● Frames and flange extenders

Stoma Aid cannot accept syringes, deodor

ants, prescription medications

or drugs of any kind.

Stoma bags do not need to be in date but all add

itional products must be at least six

months within their expiry date. Additionally, a

ll two–piece donations must have

both the stoma bag and matching baseplate/flange.


S TOMA A I D


S TOMA A I D

Order our NEW StomaAid ‘bag for life’ andhelp give ostomatesworldwide a ’bag forlife’.

Our new Stoma Aid ‘Bags for Life’ comein two styles, a cotton Tote Bag at only£2.49 + £2.50 P&P (measuring 38cm x43cm) and a larger more robust Jute Bagfor £4.99 + £2.50 P&P (47cm x 32cm)

An ideal present, both bags make astatement when you are out shopping! Thecaricature was designed by a professionalcartoonist whose work has appeared in anumber of famous comics.

All profits from sales will go to Stoma Aid.So help us to continue our support ofthousands of ostomates in need worldwideby buying one (or more) of our Bags forLife.

Order FormTo 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

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O N N H S P

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How to join – three easy stepsStep one – Complete your personal details - so that we can

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Step two – Select the number of Unity lottery entries youwish to purchase per week and how often youwish to play.

Step three – Complete the direct debit instruction orenclose a cheque. Detach the form, put itinto an envelope and return to Unity to theaddress shown on the right panel. Unity willnotify you of your Unity lottery number.

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How many entries would you like each week?

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(please tick payment

frequency and write

amount in box)

Monthly £4.34 Direct Debit only

Every 13 wks £13

Every 26 wks £26

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

Email:

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3. Select your Payment method

To: The Manager: Bank/Building Society

Address:

Postcode:

Branch Sort Code:

Please fill in the form and return to UnityName and full postal address of your Bank or Building Society.

Bank/Building Societyaccount number

Name(s) of Account Holder(s)

4. Your consent to Play (I confirm I am 16 or over and resident of GB)

Signature:

Detach the form, put it into a stamped envelope and

return to Unity at the address shown on the right. Theywill notify you of your Unity lottery number.

Post this form in a The Unity Lotterystamped envelope to: Furness Gate

Peter Green WayFurness Business ParkBARROW-IN-FURNESSLA14 2PE

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Date:

Date:Signature:

Banks and Building Societies may not accept Direct Debit instructions for some types ofaccounts.

Instruction to your Bank or BuildingSociety to pay by Direct Debit

Instruction to your Bank or Building SocietyPlease pay Unity from the account detailed in this instruction subject to the safeguards assuredby the Direct Debit Guarantee. I understand that this instruction may remain with Unity and, ifso, details will be passed electronically to my Bank/Building Society.

Occasionally, Colostomy Association may send you samples andinformation that may be of interest to you. We do not pass on yourdetails but may use them to keep you informed of what else isavailable. If you would prefer not to receive these, please tick the box.

Payment by Cheque

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£1,000 5 digits £25 4 digits

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Thank you for your support

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

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

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

(Please tick.) Yes I would like to make a single donation/gift of £15 £20 £25 £50 or

other amount (please state) £ to the Colostomy Association

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

Form in its entirety.

Yes, I require a receipt (Please tick).

Single donations from individuals, groups and fundraising events are very welcome and greatlyappreciated. So please keep them coming, no matter how small. Just £15.00 (or more) will help

cover the cost of all our patient services.

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

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

ongoing work. I have completed the Form below (Please tick),

Thanks to the gift aid scheme - we can reclaim money on your donation from the government. For every poundyou give us, we can claim an extra 25p. For example, a donation of £15 becomes £18.75 with gift aid, at noextra cost to you.

I want to Gift Aid my donation and any donations I make in the future or have made in the past four years.I am a UK taxpayer and understand that if I pay less Income Tax and/or Capital Gains Tax than the amount of GiftAid claimed on all my donations in that tax year it is my responsibility to pay any difference.

Signature: Date: / / 2017

Thank you for your gift

�

My Details: Title: Name: Surname:

Address:

Postcode:

Telephone (home): Mobile:

Email:

Optional Information: Date of Birth: Stoma Type: Colostomy

Reason for your stoma: (Please tick) Ileostomy

Year of operation: Urostomy (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)

Note:Please ensurethat we haveyour correct contact details: full name, address,postal code andtelephone number. Thank you.

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

To make a single donation...Please fill in the form, check your details are correct, then return this page to the Colostom

y Association - thank you

DONAT I ON S H E L P U S M A K E A D I F F E R E N C E


If you wish to setup a regular donation, please downloadthe form from our website:

www.colostomyassociation.org.uk

LO C A L S U P PO R T

Kirby Ostomy Support Group

Meetings are for those with a stoma livingwithin Leicestershire. We offer support toanyone with a colostomy, an ileostomy orurostomy, whether they have had surgeryrecently or in the past. Members who mighthave problems are able to discuss themwith those who understand. Partners, familymembers or friends welcome.

Meetings held in the Clinical EducationCentre, Glenfield Hospital at least once amonth, usually on the third Saturday from10.30am till 12.30pm; Parking is free in thecar park in front of the centre.

Speakers followed by tea, coffee and ageneral chat:

Saturday 15 July 2017Michael Lee – Leicester Railways

Saturday 19 Aug 2017Dawn Buswell – Stoma Care Nurse

Saturday 16 Sept 2017David Tydesdale – Garden Birds

Saturday 14 Oct 2017Julie Ede – Bess of Hardwick Hall

For more details contact:JanetTel: 0116 239 2844 or 07464 957 982e-mail: [email protected]

Pembrokeshire Stoma Association

About six years ago, along with Peter, whohad also had an operation for bowelcancer at Withybush Hospital, I decided toform our group with the support of thestoma care nurses. Pembrokeshire is veryrural and evening meetings proved to bedifficult so we now meet late mornings ondates arranged by the members. Ourprogramme is varied and includes guestspeakers. Coffee and tea is provided andmembers are free to bring their ownrefreshments.

The next meeting will be on 25 July from11am until 3pm.

For more information contact:Roy Whitfield Tel: 01437 760 701

Normandy Stoma Group

Meetings held at St Marks Hall, GuildfordRoad, Normandy GU3 2DA

From 10am till 12noon

Saturday 22 July 2017Jackie Dudley from the ColostomyAssociation

Saturday 23 September 2017Elaine Moseley from Trio Healthcare –Healthy Eating

Saturday 25 November 2017Jo McNair from Hollister

For more details contact:Jackie Sanders, Secretary Tel: 07815 603 [email protected]

News from Local Support groups


North Notts Stoma Support Group

Stoma? What next! is a leaflet produced by the support group forinforming new and existing ostomates of the nature and aims ofthe group. Copies have been given to the stoma nurses at KingsMill Hospital, Sutton in Ashfield and local doctors’ surgeries. Wealso have our own web site www.northnottssupport.co.uk and arealso on facebook as a closed group.

We are a small friendly group that meets on the second Saturdayof every month in Clinic 3, Kings Mill Hospital, Sutton–in–Ashfieldfrom 10.00am to 12.00noon. We invite representatives from thevarious manufacturers of stoma products; Claire Olley fromOakmed will be with us on 12 August and Vanessa Dosanjh fromColoplast on 9 September. When possible there is a stoma nurseto answer questions.

The meetings are very informaland can cover a variety of topics,not always just about our medicalconditions, so, as well as havinga more serious side to ourmeetings, we try and keep itlight hearted. On 9 Decemberwe will hold our ChristmasFuddle.

For more details contact:Nicky and Tore NormanTel: 01773 715 460,e-mail: [email protected]


S U P PO R T G ROU P S I N YO U R COU N T Y

Channel IslandsGuernsey

Guernsey OstomatesLuci Deane 0148 123 6077 /[email protected]

JerseyJersey Ostomy SocietyFiona Le Ber: 0153 4445 076 [email protected]

EnglandBedfordshire

Saturday Social ClubKaren Richards: 0123 479 2278

BerkshireE.B.O.C (East Berkshire Ostomy Club)Jackie Dudley: 0134 442 6652Reading Bowel Cancer Support GroupTed Wingrove 0118 961 8297 or 07974 790 558

BristolBristol Ostomy Self Support (BOSS )Janet on 01934 248 114 or Rob on0117 966 8021

BuckinghamshireHigh Wycombe Stoma Support GroupWendy Hetherington: 07717 335 884Milton Keynes Stoma AssociationThia Cooper 01908 679 295 /[email protected] Are Not Alone Stoma SupportGroupCarla 0784 6354 918

CambridgeshireConnections Cancer & ColostomyGroup Bev or Sue Scott 0135 386 0356/ 0776 695 8811 or Barbara Hunt 0135 386 2133

Peterborough Stoma Support Group –OstomisticsAlan Wright 0135 465 3290 / 0783 666 1102http://www.ostomistics.org/

CheshireCountess of Chester Hospital StomaSupport Group Stoma Nurses 0124 436 6170East Cheshire Stoma Support GroupCatherine McIntosh: 01477 535 071Stockport Support GroupAngela Simpson: 0161 320 9400 /0800 652 6667Warrington Ostomy Support GroupJane Shaw: 0192 566 2103

ClevelandOops GroupJulie Morrisroe/Carol Younger: 0128 728 4113

Co. DurhamBishop Auckland Stoma Care GroupBetty: 0138 881 4535 or email:[email protected] Support GroupSister Jacqui Atkinson: 01325 743005Durham Stoma Support GroupKatie: 0191 3332184

CornwallCornwall & Plymouth Bowel CancerSupport GroupThe Chairperson: 01726 828 419 or The Secretary: 01872 241 145,[email protected] or websitewww.cornwCornwall Ostomy SupportKen Jones: 01872 863 106 orwww.cornwallostomysupport.org.ukLanhydrock Ostomist Support GroupMandy Rowe: 01726 832 642 E: [email protected];Henry Kendall: 01208 850 986 E: [email protected] or AnnaRennie: E:[email protected]

CumbriaGrange Cancer Support Drop inMarie: 0153 953 3279Stoma Support Groups in North CumbriaStoma Care Nurses 01228 814 179

DerbyshireDiverted Local Stoma Support GroupDiane Manning: 0128 354 1311

DevonDevon IAMartin Hornby: 01458 251 095 oremail: [email protected] Devon Ostomy Support GroupJanice: 07923 975 051 or 01363 776 417 [email protected] & District Bowel CancerSupport GroupWendy Wilson or Keith Anderson:07934 922 156 Facebook: PlymouthBowel Cancer

DorsetColostomy Urostomy Pouch Ileostomyof Dorset – CUPID (Bournemouth)Beryl Andrews 0120 248 3303Colostomy Urostomy Pouch Ileostomyof Dorset – CUPID (Poole)Jenny Pipe: 0120 274 0440Colostomy, Urostomy, Pouch &Ileostomy of Dorset – CUPID (WestDorset)Colin Clare – 0130 585 3238

East MidlandsNewhall Stoma Support GroupDiana Manning: 0128 354 1311 orHelena: 0793 233 1850

EssexConnectLin Hart 0127 950 5273Mid Essex Stoma Support GroupPaul Foulger: 0124 522 4374N.E.S.S (North Essex Stoma Support)Secretary: Brian Waller: 0120 654 0449

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

Stoma support groupsin your county



Optimistic OstomatesCarol Booth: 0170 238 5510 or AngelaTaylor: 0170 238 5509 Redbridge Ostomists ClubStoma Nurses – Chris/Lisa: 020 8970 8321STEPSJackie: 0126 845 1937 or email:[email protected]

GloucestershireLadies Big Op GroupGill Hopkins: 0300 422 4363. PleaseNote: For ladies with one or twopermanent stomasVale Stoma Support [email protected] or text 0794 182 7393

HampshireSolent Ostomates Support Group (NewForest Branch)Ron Lever 0238 089 3949 /[email protected] Ostomates Support Group(S.O.S.)Sally: 07527 707069Southern Ostomy GroupCaroline or Karen on: 07756 819 [email protected] Urology Support Group Adrian Kuczynzki: 07910 786 978

HerefordshireHerefordshire Stoma Support GroupCarol Steele 0143 288 0656 or email:[email protected]

HertfordshireColoniseAnastasia 0172 776 0981Stevenage OstomisticsJudy Colston: 0143 835 4018 /[email protected] or Alfred:0176 731 6958

Isle of ManIOM Bowel Cancer Patient and CarerGroupHeather Norman: 07624 480 973Stoma Support GroupCarole Cringle stoma nurse: 0162 465 0212

Isle of WightOptimisticsCNS’s Andie Coates & AmandaBroadbridge 0198 353 4009Semi–Colon ClubTony Crowson on 01983 559 326 orCancer Clinical Nurse 01983 534 180

KentAshford Stoma Support GroupCarole Hobbs: 0130 381 4014 orMargaret Webb 0123 362 8807Atoms Support GroupMaria Culleton, SCN: 0122 776 9679 or0782 799 7424Dartford Ostomy Group Support(DOGS)Tracey, John or Sue: 0794 897 4350 [email protected] Stoma Friends Group SupportJulie Bell: 0777 134 5703 or RosMarshall: 0130 482 2696 or JuneGolding (Organiser): 0130 482 2696

M.O.G.S (Medway Ostomy GroupSupport)Helen Or Tracey: 0777 360 5534Maidstone Stoma Support GroupJudy/Kirsty: 0162 222 4305Royal Tunbridge Bowel Cancer SupportGroupBronwen Tetley CNS: 0189 252 6111 x2287Sheppey Ostomy Group Support (SOGS)Shelley 07714 734 194 / [email protected] Stoma Support GroupHeather: 0771 144 5312Thanet Stoma Buddies Support GroupPhil (Secretary) 0184 358 7769

LancashireNorth Manchester and Bury StomaSupport GroupJulie Meadows (SCN) 0161 720 2815 or0784 120 6910Oldham Stoma Support June Wilde: 0161 312 5538Phoenix Bowel Cancer Support GroupSandra Peet: 01772 683 790,www.phoenixgroupbvh.com or eMail: [email protected]

LeicestershireKirby Ostomy Support Group.Colostomy, Ileostomy and Urostomy inLeicestershireJanet Cooper: 0116 239 2844 /[email protected]

LincolnshireFriends East Coast Support GroupBetty: 0120 572 4120, Sheila: 0120 536 4493Grantham Support GroupBobbie/Rachel: 0147 646 4822 Sutton Bridge and Long Sutton OstomyGroup0140 635 1617

LondonBowel Cancer NewhamScyana: 0208 553 [email protected] (Ealing Stoma Support Group)Wendy Hetherington: 0771 733 5884Homerton Hospital Bowel & StomaSupport GroupAngela Davy: 0208 510 5318 or 0208 510 7599Rectangle – Colorectal Cancer SupportGroupRegina Raymond 020 7472 6299South Woodford Support GroupNurse Christina and Lisa: 020 8535 6563St. Thomas’ Hospital CNS: 020 7188 5918Surrey & South London Bowel CancerSupport GroupSue Berry: 0173 755 3134 or John Amos: 020 8668 0796

MerseysideI.C.U.P.SSCN: 0151 604 7399St Helens Cancer Support GroupOffice: 01744 21831, Denys Floyd:01744 884097 or email: [email protected]

MiddlesexInside Out Sarah Varma: 020 8235 4110 Bob(chairman): 020 8428 4242

NorfolkKings Lynn Ostomy Friendship SupportGroupFor more info please call 01553 775698 / 01553 674 962 / 01553 768 271STARS (SToma And ReconstructiveSurgery social support group )Sylvia Hughes 01263 [email protected]

NorthamptonshireNorthampton Ostomy Support Group Ian: 0780 1316 403 (evenings) or Trish 0770 3188 386

NorthumberlandBerwick Ostomy Support GroupBobbie Minshull: 0771 447 9320Hexham Ostomy GroupJudith on 0796 792 7286Northumberland Cancer Support [email protected]

NottinghamshireNorth Notts Stoma Support GroupTore and Nicky Norman: 0177 371 5460Nottingham QMC Stoma SupportGroupRosemary Brierley: 0115 982 6691Nottingham Stoma SupportJenny or Kate: 0115 962 7736/ Mrs B Heath: 0115 966 3073

ShropshireB.O.T.S. (Bums on Tums)Irene Constable on 0169 123 8357

StaffordshireOutlookMoira Hammond 0778 840 2195

SuffolkEast Suffolk Ostomy GroupMarion Fisher: 0147 331 1204James Pagett Ostomy Support Group(Afternoon Meeting)Vicki Blackwell on 01493 663363James Pagett Ostomy Support Group(Evening Meeting)Sandra Hutchings: 0150 258 5955L.O.G.S (Lowestoft Ostomy GroupSupport)Mandy O'Shea: 07899 913 617 orBruce Pollard: [email protected] Suffolk & District Stoma Group Jessica Pitt stoma nurse: 0163 851 5525

SurreyEpsom and District Stoma Support GroupLindsay, Trevor or Sheena: 0137 273 5925Normandy Colostomy Support GroupMarina Harkins: 01483 233 126 or07852 554 049 or Jackie Sanders:[email protected] or07815603742. Website: http://www.normandystomagroup.wordpress.com/Stoma Support GroupRobin Young: 01428 723 255

SussexBrighton & District Support afterStomas (SAS)Sylvia Bottomley: 0127 355 4407Chichester Stoma support GroupThe Stoma Care Team 0124 383 1527The Ostomy Friends GroupJane Quigley: 0132 341 7400 ext 4552West Sussex Princess Royal StomaSupportTina Walker: 0144 444 1881 ext 8318

Tyne & WearGateshead Stoma Patient and CarerSupport GroupStoma Care Nurses: 0191 445 3152 oremail [email protected] Molineaux CentreJohn Burchell 0191 265 1047Royal Victoria Infirmary Support GroupJohn Burchell 0191 265 1047

WarwickshireWarwickshire Stoma Support Group [email protected] or Bob: 07564 680 803

West MidlandsCoventry Stoma SupportMartin: 0794 738 5643

WiltshireSwindon IAwww.swindon-ia.org.ukWessex Stoma Support GroupMichael Slater:[email protected] or on 0172 274 1233

WorcestershireKidderminster & District CollossusSupport GroupBrendon Drew: 0129 940 0843

YorkshireAcorn Ostomy Support GroupMichelle: 0758 069 3155 (After 6:00pm)Airedale Stoma SupportSue Hall: 0153 564 6373Barnsley Bottoms Up Stoma SupportGroupStoma Nurses 0122 643 2528 or Celia Utley (Chairman) 0122 628 4262Behind You (Calderdale & HuddersfieldBowel Cancer Support Group)Stoma Care Nurses: 0148 435 5062Dewsbury & District OstomyJanet Edmond: 01924 512 041 or01924 512 072Hambleton and Richmondshire OstomySupport GroupStoma Care Nurses – Judith Smith andMary HugilHarrogate Stoma Support groupJacquie: 07768 024356Leeds Bowel Cancer Support GroupLynda Castle (Colorectal NurseSpecialist) 0113 206 5535Scarborough Stoma Support GroupStoma Care Team: 01723 342 388

The Hull and East Riding ColostomySupport GroupPete Smith: 0798 956 5335 or PeteRennard: 0793 951 8642 / 0148 2793966 or Rosanna Grimsby: 0148 280 1575. www.hercosg.org.uk

Northern IrelandCo. Antrim

Colostomy Association VolunteersNorthern IrelandChris Wright: 0772 071 7771Mater HospitalKaren Boyd – Stoma Nurse: 0289 074 1211 Ext 2329Royal Victoria Hospital – BelfastSarah Haughey/Audrey Steele: 0289 024 0503 Ext 3483

Co. ArmaghCraigavon Area HospitalClare Young/Lynn Berry/Janice Garvie0283 861 2721Daisy Hill Hospital Support Group Bernie Trainor: 0283 083 5000 Ext 2222

Co. DownNorth Down Stoma Support GroupAdrian Ewing on 0785 074 1511Ulster HospitalHazel/Martina: 0289 055 0498

LondonderryCauseway Support GroupMary Kane: 0287 034 6264

Republic of IrelandCo. Mayo

Mayo Stoma SupportMarion Martyn: 094 902 1733

DublinBowel Cancer Support Group (ICS)National Cancer Helpline: (00 353) 1 800 200 700 or OlwynRyan: (00 353) 1 231 0500

ScotlandAyrshire

Ayrshire & Arran Stoma Support GroupJim Krasewitz: 0129 222 0945 Stoma Care And Recovery (SCAR)Maggie: 0129 427 1060/ 0781 773 6147 [email protected] or Rhona: 0129 455 7478

FifeFife Ostomy Support GroupIshbel Barr: 0159 277 2200

LanarkshireG66 Support Group Les Ireland 0141 776 3866Glasgow Stoma Support groupChairperson: Morag Sinclair 0141 779 1322 or Jackie McChesney01505 324 052

MorayMoray Ostomates Support GroupMeggie 01343 552 449 / Kathleen07789 684 285

Scottish BordersStoma Support GroupNancy Fraser: [email protected] 0145 037 4012. Fiona Gentleman:[email protected] or 0145 037 1063

West LothianGOSH (West Lothian)Scott Pattison: 07502 163 644

WalesBridgend

Bridgend Ostomy Patients Support GroupAnita Brankley (Secretary) 0165 664 5602 [email protected]

CarmarthenshireSupport GroupIris Williams: [email protected]

ConwyNorth Wales Ostomy Support Group Hazel: 07976 817 246 or Lesley: 07828 837 325

FlintshireBag For Life Stoma Support GroupIn.It.TogetherFaye Jones 0785 275 0772

GwentBlaenau Gwent Self HelpCelia McKelvie: 0187 385 2672 After6pmCwmbran Ostomy Support Group(COSG)Philippa Lewis: 01633 791 339 / 07504 713 069

Mid GlamorganC.A.S.S Colorectal and Stoma SuportGroupColorectal Nurse Team on 0168 572 8205

PembrokeshirePSA (Pembrokeshire StomaAssociation)Roy Whitfield 0143 776 0701

PowysThe Bracken Trust Cancer SupportCentreHelen Davies: 01597 823646

Rhondda Cynon TafRoyal Glamorgan Stoma Care SupportGroupDomenica Lear 0144 344 3053

SwanseaSwansea Ostomy Self Help Group Glynis Jenkins: 0179 241 8245



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