CA Open Day, Sat 16 Sep 2017 – see page 1212 · catheters, sheaths, wound care and similar items,...

Spring 2017 | Issue 45

Helping ostomates since 1967Helping ostomates since 1967

CA Open Day, Sat 16 Sep 2017 – see page 1212

Chance to

win

£2,500– see pag

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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 pictureTracy Smith (see p9) with her husband, Andrew,preparing to take on the zip–wire challenge onNewport Transporter Bridge

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.

April is Bowel Cancer Awareness month.Although colostomies are formed for avariety of different reasons it is estimatedthat about two thirds are due to cancer.Those of you who were diagnosedfollowing a routine bowel screening willknow how important it is to do this test.But there may be others for whom, likeJean, cancer was their Room 101.Alongside her article on page 10 we havedetails of the symptoms of bowel cancerand the availability of screening. Even ifyou have a colostomy, part of your largeintestine will still be intact so you willstill need to do a test. If, however, you arein a follow up screening programme,have recently had or are due to have acolonoscopy, it may be worth consultingyour nursing team to check if it is stillnecessary. Friends and family also needto be aware of the symptoms of bowelcancer and the importance of thescreening test, so this month is a goodtime to remind them.

At 33, Tracy Smith, whose photographfeatures on our cover, was too young to beincluded in the routine screeningprogramme. She had to insist that herdoctor referred her for further tests toinvestigate her symptoms. Genetic testsrevealed that she has Lynch Syndrome. Tracytells her story and how she has founded acharity to raise awareness of this conditionand support other families affected.

With the holiday season approaching,maybe you are still undecided aboutwhether to go away this year; if so, turn toour centre pages. Many Facebook membershave already been inspired to travel byJaney Jane’s posts about her trip withHeisenburgh, her unreliable stoma. Duringher tour of Australia and New Zealand, shewas quite open about having a stoma.When people asked why she was wearinga T–shirt with the words THIS GIRL CAN heranswer was that she CAN travel with astoma. Philip has travelled extensively sincehis stoma was formed in 2007 and takes adifferent approach. At airports he saysnothing but is ready to explain ifquestioned.

The articles mentioned so far are frompeople who have had cancer. Rest assured,we have not forgotten the other reasons for

stoma formation. We have contributionsfrom two women whose stomas are theresult of endometriosis which makes uswonder if this is more common than wethink. Approximately 10% of colostomiesare thought to be due to diverticulitis; inthis issue we have a story from a readerwho had a stoma for this reason and had asuccessful reversal eighteen months later.In the summer issue we are planning toinclude an article explaining the causes andtreatment of diverticular disease and whydiverticulitis may sometimes lead to astoma.

We have received a number of letters aboutobtaining stoma supplies and in responsewe have an article outlining the differentmethods of requesting a prescription. Theintroduction of the Electronic PrescriptionService (EPS) can make the process muchquicker. Centralised management ofprescribing of stoma products has beenintroduced by Clinical CommissioningGroups (CCGs) in two areas of England andhas the potential to make the prescribingprocess simpler.

We welcome all suggestions from readersabout how we can improve Tidings. Arecent comment was that it was mainlyfemale orientated. Two thirds of our lettersthis time are from men, but most of ourReal Life experiences are female. This isbecause over the last six months thesubmissions we have received have beenmainly from women. We would like toencourage men who have a colostomy towrite for us so that Tidings can provide asimilar amount of support for both menand women.

The Colostomy Association is holding anOpen Day on 16 September 2017 tocelebrate 50 years of supporting peoplewith a stoma. The Tidings editorial team willall be there and we would be delighted tomeet you and hear what you have to sayabout Tidings and your suggestions forfuture issues of the magazine.

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

p il

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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 Story9 Tracy Smith

Founder of Lynch Syndrome UK

CA News6 Bulletin Board

12 ColostomyAssociation 50thAnniversary16 September 2017

14 Purple Iris Award

26 FundraisingA thank you for your generous donations andfundraisers

31 Picture ThisEnter the 2018 CalendarCompetition

Living with a Stoma10 Room 101

Jean Wright

17 Obtaining StomaSupplies

22 Irrigation and You

50 From One Ostomateto AnotherWind and Ballooning

Holidays and Travel32 JJ & H on tour

Janey Jane

34 Florida TripPhilip Young

From HealthProfessionals

29 The Big Bowel EventBowel & cancer research

47 Skin CareJulie Rust explains

48 Dear Nurse Julie Rust answers yourquestions

Real Lives15 A Colostomy due to

EndometriosisKaren Cracknell

41 Diverticulitis andeighteen months witha stomaAnn Coleman

Support37 The Breakaway

Foundation39 Junior Ostomy

Support Helpline(JOSH)

42 Stoma Aid45 Online Support

Facebook

51 Readers’ WritesYour letters and e-mails.

54 Local SupportSolent Ostomates SupportHexham Stoma Support Group

59 Stoma Care OpenDays

60 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 BoardStoma Friendly Society NewsOur Stoma friendly society campaign is gathering momentum. We are working with several large organisations who are planningto make the required changes to their accessible toilets. We are delighted to announce that the following organisations have joinedour campaign.

Marks and Spencer have confirmed that a shelf will beavailable in accessible toilets where the cistern top isnot suitable.

Stoke City FC’s home ground, The bet365 stadium witha capacity of 27,902, will now display ‘Not alldisabilities are visible’ #stomafriendly stickers on allof the toilet facilities across the stadium. Stoke City isthe first Premier League football club to join thecampaign.

Lincoln City Council are making improvements to theirpublic toilets and will be using our stickers, we are alsoworking with several other councils.

Lords cricket ground are now stoma friendly. Ready forthe 2017 cricket season, their accessible toilets nowhave a shelf, hook and disposal bin. You will also find a‘not every disability is visible’ sign on the doors.

How can you get involved?Social MediaWe want you to share your #superstoma across social media with a‘thumbs up’. If you don’t fancy showing your stoma bag, or your friendsand relatives want to join in you can just do a clothed thumbs upwhere the stoma is/would be and share. Let’s get #superstomatrending and celebrate how super they are.

Share your storyCelebrate your stoma and how it saved your life. We will be featuringstories across our website and social media, or you could share onyour blog or let the local paper know. Let’s raise awareness of thedifferent issues that lead to stoma surgery and highlight that anybody,any age, any background can have a stoma.

There are many more ways you can get involved. Over the comingmonths we will be releasing more information about ColostomyDay and our packs will be available in June. Keep an eye on ourwebsite and social media. You can register interest now by [email protected] with the message subjectColostomy Day 2017.

Thanks to Al from Stress Free Outdoors for the great photo.

This year Colostomy Day will continue to focus on fightingthe poo taboo by highlighting how super stomas are.

There is still a stigma around stomas but many people wouldnot be here today if they had not had life–saving surgery.Let’s celebrate how super stomas are!

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Super Stomas – Colostomy Day 2017


L AT E S T N EWS

Waste and rubbishcollectionsThere is concern that ‘belt tightening’ exercises by localcouncils are having an effect on ostomates. We haverecently been made aware of a number of cases wherewaste collections have been reduced and limitations havebeen placed on how much and what waste can becollected. In most cases the problem has been easilyrectified by additional medical or nappy waste collectionsbeing introduced.

To alleviate concern we have written to the LocalGovernment Association to seek their advice on howlocal councils should be dealing with this matter. Wewill keep you updated on our progress.

We are also putting together a handy toolkit that you can use toapproach your council if you have a problem relating to waste collections.

If you would like further information please contact us [email protected]

2017 Open DayOur 2017 Open day takes place on Saturday 16 September. With a chance tomeet fellow ostomates, find out about the latest products and listen to topicaltalks it’s a must for all ostomates. Set in beautiful parkland with golf andleisure facilities on site, the day ends with a fashion show and dinner. Findout more on page 12.

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2Omtlo

We need you…Colostomy Association BlogYou may have noticed the newly launched blog section on ourwebsite. This features guest blogs from ostomates, appliancemanufactures and more. Are you interested in featuring on ourblog? Perhaps you’d like to share your story, have hints and tips toshare or have a message for other ostomates. We would like tohear from you. Email our Marketing Officer to find out [email protected]

Young people’s focus groupsWe are launching a series of focus groups for young ostomates(18–30) to find out how having a stoma affects you, what issuesyou have, if any, and how we can better support you. If you areinterested in taking part please contact our Development [email protected]

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COV E R S TO RY

it has had on her family.The aim of the charity is,not only to supportfamilies affected byLynch Syndrome, but alsoto raise awareness of thiscondition among healthprofessionals and thegeneral public.

Feeling tired is a side effect of being abusy mum of three, working a full–timejob that entailed nights, early morningsand long days. Couple that with ahusband that works away for half of theyear, I didn’t even bat an eyelid!

I had been having trouble with a ‘pile’;even during my last pregnancy the midwifecommented on it. I tried everything the docthrew at me. I was fobbed off withhemorrhoids and an IBS diagnosis but this persistent little problem wasn’t goingaway.

Fast forward to two years later and the ‘pile’was still there! Enough was enough so Ivisited the GP and demanded to be referredto have it banded. We had a longconversation and I refused to move until hecalled them. I had tried everything he hadsuggested but nothing was working and Ineeded to be seen. I sat and watched himdial and make the appointment whichwould be in four to six weeks. As I left, Iasked for the number so I could see if Icould be put on the cancellation list as well.I called them when I got home and waslucky enough to get a cancelledappointment a few days later.

After the hospital visit, a trip to the day unitand several tests later, I was told I hadcancer. The ‘pile’ was in fact the tumorprotruding outside of my bottom. I was 33years old.

Things moved pretty quickly; my permanentstoma (Quasimodo) was formed. I startedon a clinical trial of chemo and radiotherapyas my odds weren’t too good and myoncologist said that it would be my best fighting chance. Whilst I was goingthrough my treatment, my little sister was diagnosed with bowel cancer and hadan ileostomy formed; so was my aunty,who underwent surgery and had aresection.

Life with a stoma doesn’t prevent me fromdoing anything! I’m quite pigheaded (as my husband can contest to) and I wasdetermined that my life wouldn’t change.The stoma would have to adapt to mylifestyle, not the other way around.

My oncologist and consultant wanted meto undergo genetic testing because of myage and I was diagnosed with LynchSyndrome with a MSH2 alteration.

Lynch Syndrome (LS) is an inherited genetic mutation, which gives patients apredisposition to some cancers. It waspreviously known as HNPCC or hereditarynon–polyposis colorectal cancer.

Cancers associated with LS includecolorectal, endometrial, ovarian, stomach,hepatobiliary (liver and bile), urinary andkidney, small bowel, brain/central nervoussystem and sebaceous cancers, pancreas,breast and prostate.

Twenty–nine members of my close familyhave been tested so far. Fifteen have LS andthere are close family members still to be

tested so only time will tell how many morewill be affected. Lots of extended familymembers have also been tested and havebeen found to be positive too. The numberkeeps growing and the true extent is stilluncertain.

The good thing is now we are aware andnow we have the chance to hit the groundrunning and get one up on LS because weknow about it. Unfortunately, there are lotsof families out there that know nothingabout LS and I want to change that.

Three years ago, I met a group of like–minded people and am proud to say thatI’m a founding member and trustee of anew charity called Lynch Syndrome UK.

Lynch Syndrome UK aims to ensure that forthe public benefit, people and their familiesaffected by LS are provided with support inthe form of information, signposting andlistening. The charity also aims to increasepublic awareness of the syndrome byeducating members of the general publicand health professionals.

Our vision is that all people affected byLynch Syndrome in the UK have access to standardized screening, thus enablingprevention of the development of cancerand early diagnosis enabling survival.

It is so important to me to give people thechance to fight back and take care of theirhealth, as we know that early detectionsaves lives. We sadly lost my sister at theage of 23 and my first cousin at age of 20.I don’t want to see another family gothrough this and lose people that theylove and care about. If sharing my storyprevents this, I’m happy to share.

You can find more information about LS atwww.lynch-syndrome-uk.org

LynchSyndrome

UK

Tracy Smith and Dr Ian Frayling at the 2nd Annual Conference of Lynch Syndrome UK

Tracy Smith, founder and trustee ofthe new charity Lynch Syndrome UKdescribes how she discovered she hadinherited the genetic mutation thatcauses this condition and the effect


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

As far back as I can remember, I had a dread of the word Cancer. Mymother and both her parents died ofcancer and I became convinced inmy twenties that I would too.

I remember telling friends: “If I ever getanything nasty, I don’t want to know.They can tell me I’ve got a nasty coldor a tummy bug or something, and willfeel better soon. None of this ‘ThePatient Must Be Told The Truth’nonsense for me thank you.” I reallydid not want to know.

It was my Room 101. In the novel1984, Room 101 contained the ‘worstthing in the world.’ For Winston Smiththat worst thing was rats. He envisagedthem as vicious, smelly creatures,squeaking and clambering all over him,gnawing his flesh. For me it was theBig C word. I imagined it in very similarfashion.

I reached the age of 75 without incident.Then I started to notice that my bowelhabits were changing, frequency andurgency increasing. I knew something wasseriously wrong, and I knew I was beingsilly, but I did nothing about it. EverywhereI looked, newspapers, magazines, television,I saw dire warnings that even slight changesshould be investigated, but that door toRoom 101 was too scary to open.

It was perhaps as long as a year before Imentioned it to my husband. I remembermy understatement, “I’m becoming a littleconcerned about…” A little concernedindeed! True to form he acted fast,telephoned for an urgent doctor’sappointment, told me to get in the car anddrove me to the surgery. There would be nobacking out now.

After his examination my doctor gently toldme that there was indeed a growth thereand he would arrange for furtherinvestigation. To my surprise, I felt nothing.

“I’m just numb,” I thought. “I haven’t takenit in yet.”

I waited for my inevitable disintegration, butit never happened. Throughout thefollowing few months of investigations,radiotherapy, chemotherapy, surgery(including the formation of my stoma) I feltno fear, no anger – just acceptance.

I had been told pre–operatively that mycolostomy might later be reversible, but itwas found that the tumour was too lowdown in my rectum for that to be possible.This was a great disappointment at thetime, but six months later I felt relieved notto have to face further surgery to reverse theprocedure.

The months passed. The operation and thetherapy faded into memory. I went to thehospital for my annual check–ups and allremained well. Finally, five years on, I wasdischarged.

Amazingly, at no time did I feel threatened.I had entered my own Room 101, full of myfears. I had faced up to those fears and theyhad proved infinitely less fearsome than I had imagined.

Jean Wright

dent I it d f i it bl di i t ti b t


Room 101 Bowel cancer – Symptoms

● Bleeding from the back passage(rectum) or blood in your stools

● A change in normal bowel habits,lasting longer than four to six weeks

● A lump that your doctor can feel inyour back passage or abdomen (morecommonly on the right side)

● A feeling of needing to strain in yourback passage (as if you needed topass a bowel motion)

● Losing weight● Pain in your abdomen or back passage

Ref: www.cancerresearchuk.org

Bowel Cancer Screening

In England Bowel Cancer Screening isoffered every two years to everyone(registered with a GP) aged 60 to 74.People 75 and over may request ascreening kit.

More information is available by callingthe free phone helpline 0800 707 60 60.

In Wales Bowel Cancer Screening isoffered every two years to everyone(registered with a GP) aged 60 to 74.You cannot request a kit if you are 75and over.

More information is available by callingthe free phone helpline 0800 294 3370.

In Scotland Bowel Cancer Screening isoffered every two years to everyone(registered with a GP) between the agesof 50 to 74. People 75 and over mayrequest a kit.


In Northern Ireland Bowel CancerScreening is offered every two years toeveryone aged 60 to 74. You cannotrequest a kit if you are 75 and over.


In Ireland the BowelScreen programmehas now started, on a phased basisstarting with men and women aged 60–69. Over time the programme will beextended on a phased basis until the full55–74 age group is reached.

More information is available by callingthe free phone helpline 1800 45 45 55.

Remember that no screening test is100% reliable. If you have symptoms ofbowel cancer at any age, you should notwait for a screening invitation, but makean appointment with your GP

Ref: www.beatingbowelcancer.org

Quote from George Orwell’s novel, 1984:

‘You asked me once, what was in Room 101. I toldyou that you knew the answer already. Everyoneknows it. The thing that is in Room 101 is the worstthing in the world.’


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

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

CA N EWS F R OM T H E O F F I C E



C A N EWS F R OM T H E O F F I C E

Join us for our open day and fashion show onSaturday 16 September at Wokefield Park,Berkshire. Our open day will feature exhibitionsfrom stoma product suppliers, topical talks andpresentations, SCN appointments and more. Inthe evening we hope you’ll stay for our fashionshow and dinner. Colostomates of all ages willbe gracing the catwalk and modelling a range ofoutfits proving that you can have a stoma andstill look and feel great.

The dinner will be followed by a presentationceremony, including volunteers’ contributionsand our beautiful Purple Iris stoma caredepartment award. (So please remember tonominate your team if you feel they have givenyou exemplary stoma care.)

Accommodation – To book rooms pleasecontact the hotel direct on 0118 933 4100quoting COLO150717.

Book Now!Please complete the booking form and returnit to the office no later than 31st August 2017,but the earlier the better to guarantee yourplace(s). The open day is free to attend anddinner and fashion show tickets are £25 ppWe look forward to seeing you there.

To find out more visit our website.


i f d d f hi h

50th Anniversary Open Day

andFashion Show

2017Colostomy Association 50years… where it all beganWith 2017 marking the Association’s 50th year we’ve beendelving into the archives and are learning some fascinating factsabout our past. The historic feature that we’re putting togetherwill make interesting reading. An appetiser of what’s to comeis included here.

One of our first successes has been to track down therecruitment advertisement that started it all off…

This advert appeared in the November 1966 edition of theJournal of the College of General Practitioners. Perhaps moststriking is how the aims it sets out are just as relevant today asthey were half a century ago. If nothing else, the advert tells usthat while medicine may advance, people still experiencesurgery in the same ways and have the same ‘human’ needsbefore and afterwards. Thankfully, an appointment was madeshortly after the advert was placed and the rest as they say ishistory.

To find out who got the job and what happened in the yearsand decades that followed, look out for the next edition ofTidings…

This advert appe d i



The last recipients of the Purple Iris Award were the stoma care team at MaidstoneHospital (pictured left) who were presented with the award at our Open Day fundraisinggala dinner in Reading in July 2015.

Judy Mallett and Kirsty Craven from Maidstone Hospital said at that time:

‘We are delighted and honoured to have received the Purple Iris Award. We feel it is a very special achievement as the nomination has come from patients we have looked after. We believe passionately about providing a high standard of care for patients, their families and carers that we have had the privilege to look after’.

Nominations are now open for the 2017 award, so if your team has gone above andbeyond in their care for you or a family member please complete the form below andreturn it to us by 30 April 2017.

We welcome nominations for stoma care teams who:

v Deliver an exceptional level of carev Lead an excellent co–ordinated care package with other agencies and across

a variety of health issuesv Are innovative with their ideas to deliver outstanding patient support

A representative from the winning stoma care department will be invited to attend our OpenDay dinner at Wokefield Park on Saturday 16 September 2017 when an official presentation will be made by our President.

We look forward to receiving your nominations and to hearing about the wonderful work being carried out by stoma care teamsacross the UK. Careful consideration will be given to all entries and we will feed back comments anonymously to all nominatedteams in recognition of their invaluable efforts.

–––––––––– Purple Iris Stoma Care Award – Nomination Form ––––––––––Your detailsFirst Name: _____________________________________________ Surname: _______________________________________________

Address: ___________________________________________________________________________________________________________

________________________________________________________ Post code: _______________________________________________

Telephone Number: ______________________________________ Email: __________________________________________________

Nomination detailsName of team/department: __________________________________________________________________________________________

Name of hospital/community setting: _________________________________________________________________________________

Reasons for nomination: _____________________________________________________________________________________________

In two brief sentences, please describe what impact this team’s support has had on your life or that of a family member (maximum50 words) here: ______________________________________________________________________________________________________

____________________________________________________________________________________________________________________

Additional InformationOn a separate sheet please explain why your stoma care team/department deserve this accolade (maximum 500 words). Pleaseremember to head this up with your name and that of your nominee.

I give my permission for Colostomy Association to inform the stoma care team about this nomination including what has beenwritten on this form.

Signed: _______________________________________ Name: _______________________________________ Date: _________________

Please return this nomination form to: Giovanni Cinque, Colostomy Association, Enterprise House,95 London Street, Reading, RG1 4QA by 30 April 2017.

Colostomy Association Purple Iris Stoma Care AwardThe Purple Iris is awarded for outstanding stoma care and exemplary servicewithin a stoma care department or community setting and nominations arenow being sought. This beautiful award will be presented to the winner duringour Open Day this year as part of our special celebrations.

✃


R E A L L I V E S

I have suffered from endometriosis forthe last 20 years. In 2008 I had ahysterectomy which was supposed tostop further problems and indeed it diduntil March 2015, when I started to sufferpainful spasms in my left groin area. Ihad recently given up work and plannedto take six months off then get a parttime job. It would mean I could do somework on the house and we could also geta dog, something my husband and I hadwanted for a long time.

My GP suggested that it may be scar tissuefrom my hysterectomy which was causingthis pain and prescribed painkillers. Overthe next few weeks, the pains didn’tsubside and I then started to suffer withconstipation. I purchased over the counterremedies, which worked initially and I felt abit better but then after a few days beganto feel nauseous and ended up beingviolently sick. There was blood in the vomitso my husband took me to A&E. We spenta Saturday in A&E having X–rays etc. Theycouldn’t find a blockage, so gave me anenema and, as this worked a bit, sent mehome. Things did not improve during thenext week and I still couldn’t go to the loo.I was sick again, this time it was mainly bile.It was a weekend again; the out of hoursGP suggested I go back to A&E. So off wego again.

More scans, a CT this time; it showed anarrowing in my bowel, but the doctorsweren’t sure why. The following morning aconsultant looked at my scan in moredetail and found that my bowel was

completely blocked. After a fewdays in hospital, I was booked infor an operation. Although I feltpleased that a problem had beenfound, I was scared to deathwhat they would find – would itbe cancer?

The consultant explained thevarious kinds of stomas, sayingthat they wouldn’t know exactlywhat they would be able to do,until I was on the operating table.To be honest, I was more worriedabout having a bag than I wasabout the actual operation. I’ve

always been a bit squeamish about pooand didn’t think I would be able to cope. Alovely stoma nurse came and spoke to mein more detail, measured me up and drewa black circle on my stomach where thestoma would be. Although she put my mindat rest about a few things, I was still reallyfrightened. I was also distraught as we weresupposed to be picking up our puppy at theweekend.

The operation took six hours. The nextmorning the consultant told me that theyhad done a Hartmann’s procedure. Theywere pretty certain that the blockage wasdue to endometriosis, not cancer, althoughto be certain they would have to send asample off for analysis. What a relief, nocancer! Although I still had this bag.

I was in hospital for two and half weeks intotal because the wound became infected.As the wound and the stoma were closetogether the wound had to be dressed andthe bag changed at the same time. When Igot home the district nurses came in to dothis. I didn’t really get to change my bagcompletely on my own for about a month.The first time I did it, I felt such a sense ofachievement. My stoma, by this timenamed Stanley, did misbehave for a whileand I had quite a few leaks and for a timedidn’t go out, but slowly things began tosettle down and I started to get back tonormal. We picked up our puppy, calledMurphy, who settled in really well. Lifeseemed OK but I put off looking for a parttime job until 2016 to give myself time toget properly better.

Things were going well until February 2016when I started to get pains in my groinagain and then my left leg swelled up; a CTscan showed that a lump was pushing onthe main blood vessels into my legrestricting the blood flow. The medical teamwere pretty sure that the lump wasendometriosis again. Apparently, it ispossible, although very uncommon, forendometriosis to still be active even after ahysterectomy.

I was referred back to the gynaecologicalteam. My consultant said that I amsomewhat unique and he hadn’t seen thisamount of endometriosis before. I am nowon strong painkillers, which allow me tocarry on a fairly normal life, although I can’tdrink alcohol! It is uncertain if an operationwill be of any benefit, due to the amount ofendometriosis I have, and the surgical teamare worried that it will cause moreproblems that it will fix. I am having scansevery six months to see what is happening:the last one confirmed it hadn’t got anyworse, but also hadn’t got any better. I amlooking at this as a positive.

It is unlikely that I will be able to have mystoma reversed and I am OK with that now.Stanley has become my friend and most ofthe time we get along fine. We have theodd bad day, but they are now few and farbetween. My husband, the dog and I havebeen on holiday. I was worried being awayfrom the comfort of my own bathroom, butalthough it wasn’t perfect, I managed.

I hope that things have finally settled downnow and my life has some normality to it. Iam enjoying walking Murphy, something Iwasn’t able to do a few months ago due tothe pain, and have also taken up cycling –although I am taking this slowly!

Karen Cracknell

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A colostomydue toEndometriosis

Medical Terms Explained

Endometriosis is a disorder wheretissue that behaves like the lining of the womb (endometrium) is foundelsewhere in the body.

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PrescriptionsStoma bags and most additional stomaproducts are available on prescription.People who live in Scotland, Wales andNorthern Ireland do not have to payprescription charges. In England if you areover 16 (18 for those in full time education)and under 60 you have to pay forprescriptions unless you have a medicalexemption (MedEx) certificate.

If you have a permanent stoma or areundergoing treatment for cancer yourdoctor or stoma care nurse will give youform FP92A to apply for a MedeX certificate.Once you have this certificate allprescription items (medicines as well asstoma products) will be free of charge. Thecertificate will be valid from one monthbefore the date that the NHS BusinessAuthority receives the application form. Ifyou have to pay for a prescription beforeyour certificate arrives ask for a receipt andyou will be able to claim a refund.

You may not be given an application formfor a MedeX certificate if your stoma isregarded as temporary; maybe it is a loopstoma intended to be in place for just a fewmonths to allow the bowel downstream toheal. If this is the case and you live inEngland you will have to pay prescriptioncharges unless you are exempt because ofyour age, you are on benefits due to lowincome or you are being treated for cancer.If you are not entitled to a MedEx certificate,you can purchase a prescription prepaymentcertificate. This will work out cheaper if youare prescribed more than three items inthree months or 12 items in a year.

For further information visit the PrescriptionPricing Authority (PPA) website:www.nhsbsa.nhs.uk/HelpWithHealthCosts.aspx or phone the PPA Helpdesk on 0300 330 1341

Ordering SuppliesIf you have had a stoma for many years youwill remember the day when the only way

to order stoma supplies was to request aprescription from your GP, by phone orcalling in at the surgery. In most GPpractices the prescription was available for collection within 48 hours, so that itcould be:

v Taken to a pharmacy and the suppliescollected when they were in stock.

v Posted in a freepost envelope to aspecialist stoma product deliverycompany, known as a DispensingAppliance Contractor (DAC). Names ofsome of the larger companies whichyou may recognise are Amcare, Bullen,Charter, Fittleworth, Respond, SaltsMedilink and SecuriCare. Supplies werethen delivered to your door within afew days.

We regularly receive letters from long–standing ostomates to say that they stillorder their prescription themselves bytelephone or by calling in at the surgery.Then they collect it and take it to apharmacy or post it to a delivery company.They assure us that this still works very welland they receive their supplies within aweek. For some the system is now eveneasier as they order their prescription onlineand the GP sends the prescription to thenominated dispenser (DAC or thepharmacy) via the Electronic PrescriptionService (EPS)

To make it easier, particularly for peoplewho find it difficult to get to their GPsurgery, most delivery companies nowprovide a service where they will order theprescription from your GP. You can contactthem yourself when you are down to thelast box of supplies. Alternatively, thecompany can call you, often monthly, tocheck whether you need more supplies.GPs, however, are not obliged to deal witha delivery company; if this is the case withyour surgery it may be worth making anappointment to discuss problems youhave collecting and posting theprescription. Alternatively, you could tryusing your local pharmacy to dispenseyour products.

Delivery companies ordering theprescription has, however, added anotherstep in the procedure. If the GP does notrespond within 48 hours it can take longerfor supplies to arrive. To combat this somecompanies used to send out suppliesbefore the prescription was received. Thissometimes made it difficult for suppliers toobtain prescriptions for products alreadydispatched, and in some cases led to over–ordering and stockpiling of stomaproducts.

The Department of Health consultation inMay 2010 recommended that, exceptwhere there is a need for urgent supplies,delivery companies and pharmacies must have the prescription in hand beforeany stoma products can be dispensed.When this was implemented theColostomy Association received manyletters and e–mails complaining about thetime that it was taking from when theorder was first placed until the supplieswere received. It was thereforerecommended that a prescription requestis made to a delivery company threeweeks before supplies are needed toensure there is no chance of running outbefore the order arrives.

In 2010 it also became compulsory forpharmacies (if they dispense stomaproducts in the normal course of theirbusiness) as well as delivery companies toprovide Essential Services. This includesproviding:

v A reasonable supply of appropriatesupplementary items (disposable wipesand disposal bags).

v Home delivery in unmarked packaging–with reasonable promptness and at atime agreed with the patient.

v Referral or signposting to anotherdelivery company if they are unable toprovide any items on the prescription.

v An emergency supply of appliances,provided that the prescriber undertakesto furnish a prescription within 72hours.

v Advice about appliances, on repeatdispensing and minimising waste.

Pharmacies and delivery companies canchoose to sign up to the Advanced Serviceand offer all the Essential Services aboveplus appliance customisation i.e. cutting offlanges and/or an Appliance Use Review(AUR).

How you order your supplies is up to you.Your prescription can be dispensed by thedelivery company or pharmacy that youchoose. You can order the prescriptionyourself or ask them to do it for you.Modern technology is speeding up thewhole process of ordering and dispensing.Patients can now order prescriptions onlineand delivery companies can make aprescription request electronically. The GPcan then send a digital prescription to thedispenser.

Prescriptions to order stoma supplies was to request a

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Obtaining Stoma Supplies

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Don’t forget: A MedEx certificate onlylasts for five years, so make sure it is stillin date. Fines are being imposed onthose claiming exemption without avalid certificate. Reminder notices aresent out to the holder’s last knownaddress three or four weeks before itexpires, so remember to inform thePrescription Pricing Authority (PPA) ifyou move house.

The length of time people have to waitfor their supplies still depends on how quickly a GP responds to a requestfor a prescription. The ColostomyAssociation therefore still recommendthat ample time is allowed whenmaking prescription requests.



In 2005 the way prescriptions were issuedin England began to change. It has been alittle over 11 years since the first ElectronicPrescriptions were issued by GPs but youmay have noticed little change.

Release 1 in 2005 printed a bar codeon the bottom of the paperprescription, which allowed thedispenser to read the details straightinto their electronic prescribing system(EPS).

Release 2moved this forward with theGP being able to send a completelydigital prescription straight to thedispenser, removing the need for apaper prescription at all. This systemhas been in use for a number of yearsnow, and a majority of GPs have theability to prescribe in this way, whilstdispensers (pharmacies and DACs) arenow able to receive EPS prescriptions(they are actually referred to as Tokensin the system).

You may now be becoming more awareof EPS as there has been a major pushby the NHS in England over the last yearor so to encourage GPs to start to issuetheir prescriptions electronically and forpatients to ask for this rather than thepaper, FP10, version. Uptake has beengood and 84% of GPs, 99.3% ofPharmacies and 92.8% of DACs can now send and receive electronicprescriptions. In fact, 46% of allprescriptions issued in August 2016 weresent electronically.

Using EPS to replace paper prescriptionshas a number of advantages for both youas a patient and for prescribers anddispensers:

● Transmission of the prescription is veryquick. In theory it will be at thedispenser before you can walk roundthe corner. This may not be that usefulif you currently still take a paperprescription to the chemist, but if it isposted by the GP or if it is collected bythe dispenser, then it will almostcertainly reduce the delay.

● It’s quicker:– for the GP as electronic prescriptionscan be signed electronically.

– for the dispenser as they do not needto type in the items on theprescription into their system.

● It’s more efficient and less wasteful; thereare not millions of green prescriptionsbeing printed and then bundled up andsent to the NHS for payment.

● It’s more accurate – as there are lesspeople typing and inputting information,fewer mistakes are made.

So, how does EPS work?You can still chose who dispenses yourprescription, this is called “nomination”. Inthe majority of instances both medicinesand appliances will be required:

● Medicines must go to a pharmacy (or adispensing GP if you live in a rural area)so you can “nominate” any pharmacy youwish, it may be in the Practice down theroad, near work or one in a supermarket.The choice of who dispenses is up to you.

● Appliances prescriptions – stoma bags,catheters, sheaths, wound care andsimilar items, can be dispensed by apharmacy, dispensing GP, or a DispensingAppliance Contractor (DAC). You canchoose which of these you use and youcan nominate (choose) a differentdispenser to issue your appliances to theone that dispenses your medicines.

Remember, with both paper and electronicprescriptions, the prescription belongs toyou, the patient, and you can take it to, ornominate any dispenser, anywhere in thecountry. A prescriber or any other healthcare professional cannot tell you where youmust take or send it.

How do you make a nomination?You can nominate your dispenser at yourGP surgery, at any pharmacy or ask yourDAC to do it. They may often want you tosign a consent form as a record of yourrequest so that they have proof of yourchoice. They will then update the EPSsystem and whenever your GP needs toprescribe items for you the prescription is

sent automatically to the dispenser(s) youhave chosen. It is very simple.

You can change your nomination at anytime and this will change where anyprescriptions are sent.

EPS works really well with repeatprescriptions. If you have the sameappliances month after month, rather thancontacting the GP every time, they canupload 6 or 12 prescriptions into thesystem. As each one is used, the next oneis made available automatically. Thedispenser MUST contact you each timethey pull a prescription off the system tomake sure you need the items and yourcondition hasn’t changed – a sensiblemeasure to prevent waste and over usage– but this really is no different to bestpractice with paper prescriptions.

How much is EPS being used?EPS is now the norm, 84% of all GPpractices can now issue electronicprescriptions and 99% of pharmacies and93% of DACs can dispense them. Over300m electronic prescriptions have beenwritten and almost 700m itemsdispensed. Nearly 5 in 10 prescriptions arenow issued electronically, so you can seethis really is the way forward.

If you haven’t used an electronicprescription yet, then speak to your GP oryour dispenser.

Remember, you can have a differentdispenser for your appliances to yourmedicines and the prescription is yours,so you can send it wherever you want!

What about Scotland and WalesScotland and Wales have their own NHSand they decided that they wouldintroduce electronic prescriptionsdifferently. They still issue paperprescriptions that are bar coded, much asEPS Release 1 in England.

At present appliances cannot have anyform of electronic prescription and DACs or Approved Stoma Suppliers (inScotland) are not permitted to use EPS. ■

Electronic Prescription Servicefor England only

The following article on the Electronic Prescription Service (EPS) was written andapproved by the Patient, Industry and Professionals forum (PIPs).



At the beginning of August 2016Nottinghamshire Clinical CommissioningGroups (CCGs) – with the exception ofBassetlaw CCG – introduced a new systemfor the management of prescriptions.Prescriptions were no longer to berequested from GPs. Over a three monthperiod, details of everyone at the practicewho had a stoma were passed over to theNottinghamshire Appliance ManagementService (NAMS). This included name andcontact details, date of birth, type ofstoma, prescribed appliances and date ofthe last prescription. Patients werecontacted by letter and informed of thedate after which they would be requiredto order their prescription from NAMS.They were also sent a booklet thatexplained the system.

In the early days when people orderingstoma supplies were unsure how thesystem worked, callers had to wait sometime before their request was handled. Nowthat all 2,900 people in the Nottingham areawho currently require stoma supplies havebeen registered, this problem has beenconsiderably reduced. The highest volumeof calls is received on Mondays and Fridays,so midweek is the best time to ring. Thereis a facility to leave a message and receive acall back. Supplies can also be orderedonline; proof of identity is required to obtaina username and password.

A prescription co–ordinator prepares theprescription and it is checked and signed bya specialist stoma care nurse. It is then sentto any one of the many suppliers whichcould be a dispensing appliance contractor(DAC) or a pharmacy. Most people opt forthe same company or pharmacy that theyhave used in the past.

So what prompted Nottinghamshire CCGs toadopt this new system? It has long been

recognised that people withstomas can ‘fall through the net’;they may not have seen a specialiststoma care nurse for years. GPs arenot familiar with stoma care issues,and there are people strugglingwith stoma related problems andoutdated products.

The five prescription co–ordinators who take the calls at NAMS ask two questions toestablish whether the caller ishaving any problems and whether theproducts they are using are suited to theirneeds. If necessary, they can arrange for aspecialist stoma nurse to call them back. Ifthe issue is leakage or sore skin they canoffer an appointment with the nurse andbook it there and then. No doctor’s referralis required.

The appointment can take place at theNAMS centre where there is a dedicatedconsulting room, or in the patient’s home.At present the centre employs two specialiststoma care nurses and when the scheme isfully operational there will be three. Thismeans that each day six or sevenappointments are available at the centre ora nurse can visit two or three people athome. These nurses work closely withstoma care nurses at the local hospital andthose employed by the stoma carecompanies.

Although the initial three–year contract hasbeen awarded to Fittleworth Medical Ltd, an

independent team administers the scheme.Specialist nurses are free to suggest anyproducts and it is the ostomate who choseswhich company dispenses them. It isexpected that the scheme will lead to adecrease in the prescribing of inappropriateproducts and hence some financial saving.Any changes to prescriptions will, however,be made by specialist stoma nurses inconsultation with their patients rather thanby GPs who may be unfamiliar with theneeds of people with stomas.

A similar scheme of centralising stomaprescribing, covering a much smaller areaand based on a slightly different model wastrialled in Rotherham from 2010 To 2011. Ithas now been permanently adopted and ismanaged by the local continence service.

The core objectives of centralisedprescribing are to provide a better serviceto patients and to improve outcomes. Withan improved relationship with patients, it ishoped that these services will deliver bettervalue for the NHS. It remains to be seenwhether other CCGs will adopt thecentralised management of the prescribingof stoma care products. There are severalpilots running around the country, earlydays but change for the right reasonsshould be encouraged.

Centralised Management of Prescribingof Stoma Products Nottinghamshire ApplianceManagement Service – NAMS

S HOWCAS E S TOMA C A R E P R ODU C T S A N D S E R V I C E S

| 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 P R I N G 2 017 | 2 1

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

For those seeking extra security around the edges of their pouch,Dansac X-tra Strips are a flexible new option.

Designed to fit all body shapes, the new skin friendly strips provideadded comfort and security, whilst delivering the confidence andreassurance you deserve.

For samples, visit dansac.co.uk or call 0800 521377

If you would like a sample,please contact

Hollister Customer Serviceson 0800 521 377

Preserving Confidence.One strip at a time.

Hollister know about 50% of thoseliving with a stoma will report skinissues at some point.

With our new Adapt CeraRing,ceramide has been added to protectthe skin’s natural moisture barrierand prevent water loss which leadsto damage and dry, itchy skin. ● See our main advert on page 40.

● See our main advert on page 54.

Sash Medical Ltd have supplied theNHS with bespoke Stoma HerniaBelts and Security Leakage Belts formore than 20 years.

A recent addition to our Ostomy products is a LowDomed Stoma Shield, which apart from being lessobvious under clothing is also less likely to be pushedaside by a car seat belt or during work, sporting activities,gardening, etc.

Both the High and Low Domed shields are supplied withan elasticated belt, or if requested, can be made fortemporary attachment to the Sash Stoma Hernia Beltwhich gives a firm shield base for added security.

Stoma ShieldLow Dome High Dome

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Irrigation and YouI am always delighted to receive emails and letters from our readers. Thistime we hear from Bunny Kennedy who took up irrigation in preparation for atrip to Australia, and Jim Arkell who describes what happened when he hadan issue with irrigation.

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

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

Bunny writes: Deciding to travel to Australia to meet ournewest great grandson was met with sometrepidation. The first was that both myhusband and myself were just into our 80s – going to the gym and using therowing machine on a regular basis was sureto pay off. The second was that I had astoma!

How would this stoma affect travelling sucha long way? How would I be able to join inwith family activities? How many bagswould I need? How and where would I beable to change my bag? What food could Ieat? The questions were endless. With allthis in mind I decided to give colostomyirrigation a try, the idea being that Iwouldn’t need to change my bag as often,if at all!

I had a few lessons from my stoma carenurses and decided to use the irrigationpump. With the unwavering support of myhusband, reassurances from my stomateam, luke warm water on tap, endless

supplies of wipes, and a couple of sparehours, I was all set. By the time we left forAustralia, I had mastered the technique.This meant that I didn’t need to change mybag as often or have the worry that thestoma would start working at inconvenienttimes. To some extent I had some controlover it now. I planned to do the irrigation

every second or third day depending on ourschedule.

I had wanted to give kayaking a go. I know!At 81! Really! I had a couple of lessons,thank you Gruff, prior to leaving the UK sowas fairly confident in the water. I just didn’tneed the hassle of my stoma deciding towork whilst out in a kayak. A day beforekayaking I spent a couple of hours doing myirrigation and was able to kayak with peaceof mind knowing that my stoma was undercontrol. Just look at the photo.

Jim writes: I was given a permanent colostomy in 2008 following an operation to remove alower rectal tumour in a procedure calledan abdominoperineal resection (APeR).Eighteen months later I learned to irrigateand have continued to do so ever since.That decision changed my life so much forthe good.

Irrigation is completely routine, or so Ithought. I usually carry it out every other

If you have any questions, comments or experiencesof irrigation you’d like to share please send an e-mailto [email protected] orwrite to me at Colostomy Association head office.

Sarah Squire


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

morning and have a stop–watch to keep aneye on progress. In general, it takes about10 minutes to fill the bowel with aboutthree pints of warm water, then a further 15minutes for evacuation. The irrigation sleevecan safely be removed at the 40 minutemark and a small patch is then applied toprotect the stoma.

On a recent occasion, having filled the bowelwith the appropriate quantity of irrigationwater, I was surprised to discover thatevacuation was not happening. Although asmall quantity of water drained from thestoma, peristalsis had ceased. Half an hourlater I was becoming a little concerned. Itried massaging the tummy and jumping upand down, to no avail. An hour later, with nosign of progress, I removed the sleeve andapplied a drainable bag to the stoma just incase it should become active withoutwarning. Eventually the trapped water wasabsorbed by the digestive system and

disposed of through frequent urination visitsto the loo. Meanwhile, the drainable bagremained empty.

Worried about what to do next, I consultedmy stoma nurse and sought advice from thelocal pharmacy. In the previous 24 hours Ihad prepared a meal including overcookedcouscous, which severely bunged me up. Weconcluded that I was so constipated thatirrigation had become ineffective and that Ishould take a laxative (Fybogel) and attemptirrigation 48 hours later. I am glad to say thesubsequent attempt was successful and Ihave had no further difficulties since.

In summary, after seven years of trouble–free irrigation I had my first failure becauseof constipation. If this happens to you, don’tworry: keep calm, take a mild laxative andtry irrigating again a day or so later or if stillconcerned, speak to your trusty stomanurse

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

is an educational DVD aimed at patients, it has been produced by theis an educational DVD aimed at patients, it has been produced by theis an educational DVD aimed at patients, it has been produced by theis an educational DVD aimed at patients, it has been produced by theis an educational DVD aimed at patients, it has been produced by theis an educational DVD aimed at patients, it has been produced by theis an educational DVD aimed at patients, it has been produced by theis an educational DVD aimed at patients, it has been produced by theis an educational DVD aimed at patients, it has been produced by the

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

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Colostomy Irrigation and You DVD

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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 below.

Fundraising



2017 Raffle – get yourtickets now!For the 2017 Colostomy Associationannual raffle there’s an even greaterchance to win! There’s still a fantastic firstprize of £2,500, second prize of £500, andfour chances of winning £250, but there arenow five chances to win £100 as well.

Tickets are only £1 and all money raisedfrom the raffle will go towards supportingvital Colostomy Association services suchas our 24–hour helpline, free literature andTidings magazine.

Inside this edition of Tidings, are two booksof raffle tickets and more can be orderedfrom our office. Simply fill in your details onthe tear–off slip and post that section backto us along with your payment. It couldn’tbe easier. All ticket sales need to be in byFriday 15 December 2017 and the winnerswill be notified by email, phone or post andannounced in the Spring 2018 edition ofTidings. What better way to start the NewYear than spending your winnings in thesales or on a last–minute holiday!

Good luck everyone!

Are you an ActiveOstomate?The Colostomy Association is looking forostomates and non–ostomates alike whoare interested 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]

St John’s Charity ofthe Year

Many thanks to St John’s EvangelistChurch in Fareham, Hampshire, who havenominated us as one of their charities ofthe year for 2017. Each year churchmembers and friends knit chickens whichhold a cream egg – these beautifullyknitted chickens are then sold to raisefunds for their chosen charities. There’s agreat community involvement as localshops and businesses also sell thechickens on behalf of the church. What alovely way to donate an Easter egg tosomebody too!

ggC AS H P R I Z ES • C AS H P R I Z ES • C AS H P R I Z ES • C AS H P R I Z ES

C AS H P R I Z ES • C AS H P R I Z ES • C AS H P R I Z ES • C AS H P R I Z ES

£1Ticket5 per book

2nd prize £500 £250 x 4 prizes £100 x 5 prizes1st prize £2,500

No tickets may be sold by or to anyone un

der 16 years. No tickets may be sold on

the street.

Promoter: Mr Monty Taylor, Colostomy Association,

Enterprise House, 95 London

Street, Reading, RG1 4QA

Winners will be notified by telep

hone, email or post and announced in

the Spring 2018 edition of Tidings

Colostomy Association is a charity registered in Engl

and and Wales No: 1113471

Lottery Licence no

: LOT000141

Draw date: Friday 29 December 2017 around 12:00noon

at Colostomy Association, Enterprise House, 2nd Floor, 95 London Street, Reading, RG1 4QA

Annual Prize Draw

Your chance to win

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First name ......................................................

.................

Surname .......................................................

....................

Address .......................................

......................................

........................................................

..........................................

........................................................

..........................................

........................................................

..........................................

Postcode ....................................

......................................

Tel no ............................................

......................................

eMail ....................................................

...............................

Please return payment, ticket stub

s and unsold tickets

no later than Friday 15 December 2017 to:

Colostomy Association, Enterprise Hou

se,

95 London Street, Reading, R

G1 4QA.

Draw to take place on: 29 December 2016

at Colostomy Association, Enterprise House, 2nd Floor,

95 London Street, Reading, RG1 4QA

Late entries will be treated as

donations.

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Annual RaffleOur special thanks go to everyone who purchased a ticket for our 2016 raffle. Salesexceeded an amazing £18,000 and your support was very much appreciated. The drawwas made on Friday 30th December 2016 and the winners are:

1st prize £2,500 Mr W

2nd prize £500 Rose Galpin from Chelmsford

3rd prizes £250 Sue Smith from Somerset, Ray Hopkins from Coventry,Elizabeth Vale from Essex and Edwin Shaw from Blackburn

Congratulations to all the winners and a big thank you goes to everyone whopurchased tickets.

Funraisin

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2nd prize

3rd prize

ConnnnngnnrnnanntnnunpurnrnncnnhnnannsnnenFundraising

Focus



Fabulous Fundraisers!Yet again our supporters, their friends andfamily members have been busy raisingfunds for the Colostomy Association. Asalways we’re hugely grateful and humbledby the efforts of so many people who helpto financially support our vital free services.

In this edition we would like to thank thefollowing individuals and groups:

Wendy Green (pictured here) donated£150 from a collection for her 80th birthday.

Romiley Methodist church donated £200from their Sunday coffee mornings.

The Shropshire B.O.T.S (Bums on Tums)raised £250 from their 2016 open day.

Barr Teas in South Ayrshire raised £750 fromvillage teas and the annual ladies’ lunch.

Stephen Axford and his Royal Mailcolleagues raised £657.

Roy Tuckey donated £200.

Radcliffe Knit & Knatter group donated£50 thanks to Mrs Janet Boddis, whophoned the office shortly after her husbandhad stoma surgery. Mrs Boddis spoke to avolunteer who was so helpful that she toldthe group how great the ColostomyAssociation was and they decided to makethe donation from their small charity fund.

Colostomy Association trustee CarolineEmeny held her annual village cake sale inNovember 2016 and raised a brilliant £900.

Elsie Davidson donated £100 to Stoma Aid.

Kingswinford & Stourbridge Lions Clubdonated £200 for Stoma Aid.

Do you know yourOasis from your Elvis?Caroline Emeny, fundraiser, volunteer andTrustee, will be holding her 6th Annual FUNMusic Quiz at her local village hall inLaxfield, Suffolk (IP13) on Friday evening19 May 2017.

This event is always packed and is anevening of great fun, but greatconcentration as well, as teams delve intotheir memory banks to find the answers.

Caroline insists the format is 50% easy thateveryone will know, 30% a little bit harderthat around half of the teams will know and20% usually consisting two clinchers toseparate the wheat from the chaff!

Written question rounds are interspersed withlistening rounds where music is played andthese are hugely popular. The atmosphere isalways electric and great fun is had by all.Questions are taken from the 1950s rightthrough to modern day, going through thedifferent musical eras along the way.

Entry costs just £20 for a team of four andpeople take their own drinks making it avery cheap night out, while raising moneyfor the Colostomy Association.

If you would like to know more, andCaroline would love to get some localostomates and friends on board, please callher on 01986 798 422.

Unity LotteryIt’s now been over a year since the UnityLottery replaced our 500 Club and we’reglad 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. People can join by completing theform on page 25 or online by visitingwww.unitylottery.co.uk but pleaseremember to link 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 CB & HH Taylor 1984 Trust

The Pennycress Trust

The Stella Symons Charitable Trust

The Wilmington Trust

The Prudential Small Donations Fund

TextgivingYou can now make a donation to theColostomy Associationwith a text message!

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.

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

Leave a LegacyLeaving a legacy in your Will is a trulyspecial way to make a lasting difference. Itwill help ostomates of tomorrow, as well astheir family members and carers, receivelife–changing support from the ColostomyAssociation.

What your gift meansLegacies large and small have anextraordinary impact for the thousands ofpeople that we help and support. A legacywould:

v Ensure there is always a voice at theother end of our 24 hour helpline.

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

v Help fund our campaign for a stomafriendly society.

v Make sure that ostomates of tomorrowreceive the same support from us thatyou yourself have received.

Every hour of every day we provideinvaluable help and support. Please helpus to help others in their time of need.

How to leave a legacyA solicitor can help you to write a Will or, ifyou already have a Will, a codicil. Yourlegacy would be used wherever it is mostneeded – or you can choose to support aspecific area or project if preferred.

Your solicitor will need the followinginformation on our Charity:

Name:Colostomy Association

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

Charity Commission registration number: 1113471

After you have provided for your loved oneswe hope you will consider a gift to ourCharity. Thank you.

Wendy Green (pictured here) donated

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

Bowel & CancerResearch is a nationalcharity. We believe thatno one should die ofbowel cancer or haveto live with chronicbowel disease.

To achieve this we fund the best scienceacross the UK and invest in the nextgeneration of research experts through aspecialist PhD programme.

Our funding supports all aspects of researchwith a clear patient benefit, from betterdiagnostics, to improved treatments, rightthrough to surgical innovation andafter–care.

Join us at the Big BowelEvent – 8 June 2017We’re extending a warm invitation to theColostomy Association and its membersto join us in Birmingham on 8 June 2017for a day dedicated to getting involved inbowel research. We’re aware howpeople living with chronic disease canfeel very isolated and we want to givepeople a small taste of the extensiveamount of work that is being done tomake life better and provide solutionsfor the issues that people face.

Held at a central Birmingham venue,with refreshments availablethroughout the day and lunchprovided, the Big Bowel Event is freeto attend. In the morning,presentations will be made on avariety of topics and in the afternoon,you’ll be invited to participate inround table sessions.

For anyone who has an interest inbowel disease and research, this isan event not to be missed.

For more information and to register for the event:

https://www.eventbrite.co.uk/e/the-big-bowel-event-tickets-30849305102?aff=eac2

Telephone: 020 7882 8749

What’s on at the Big Bowel Event?You will have the chance to connect with some of the UK’s leading researchers,

covering topics from bowel cancer to IBD and IBS.Session one – Lifestyle and your bowel diseaseSelf-help lifestyle factors after bowel cancer – what’s the evidence – are they

worth the effort? Professor Robert Thomas, Consultant Oncologist Bedford and

Addenbrooke’s HospitalsIBD Relief: Developing an education and support app for Inflammatory Bowel

Disease (IBD) patients. Mr Seb Tucknott, Digital InnovatorSession two – Clinical trials, what’s new?CapaCiTY – the world’s largest programme of research into the treatment of

chronic constipation in adults, performed in the UK NHS. Professor Christine

Norton, Florence Nightingale Foundation Professor of Clinical Nursing

Research

IBS School – a pilot study comparing an educational group with an online

approach to support people to self–manage. Dr Anton Emmanuel, Senior

Lecturer in Neurogastroenterology at University College LondonSUBSoNIC – a study to find out if the most popular surgical treatment for faecal

incontinence called sacral neuromodulation works and why. Professor Charles

Knowles, Professor of Surgical Research Queen Mary UniversitySession three – Devices, data and developing servicesDirecting treatment – the expanding role of MRI. Dr Alex Menys, Chief

Executive MotilentOstom-I Alert – smart stoma bag technology. Mr Harrison Posner, UK Business

Development Liaison Ostom-I AlertBile Acid Malabsorption – developing a more effective and cheaper test for

this common cause of diarrhoea. Professor Matt Brookes, Consultant

Gastroenterologist, Royal Wolverhampton NHS TrustImproving services for people with anal cancer. Mr Mo Thaha, Senior Lecturer

and Consultant in Colorectal Surgery Queen Mary University of London“ContactME-IBS”– Does the use of Consent for Contact increase patient

opportunities to participate in clinical research, and improve recruitment to

time and target in IBS clinical trials? Linda Tinkler, Academic Research Nurse,

Co. Durham & Darlington NHS Trust.

Where is the Big Bowel Event?The event is happening at Maple House in the centre of Birmingham. The

venue is very accessible via rail, bus and driving. Full details will be forwarded

upon completion of registration. Travel bursaries are available, please contact

[email protected] for further details on these or with any

other queries.

PICTURE THISA reminder to all you lens men and women

Last Call for entries to our 2018 Calendar Competition

The theme for our photo competition is ‘travel’ but please feel free to interpret this broadly.Pictures of stunning landscapes are welcome, butmaybe you can come up with an unusual angle?The idea is to show that having a stoma doesn’tprevent you enjoying life to the full. Allphotographs will be judged anonymously and thebest 12 will be shortlisted for inclusion in our 2018Calendar. It promises to be another stunningcalendar and your photos are very muchappreciated.

So please don’t delay, as the closing date for entries is30th April 2017 and this is fast approaching! Justremember to set your camera to the highest quality andin landscape (so that your photograph/s will be suitablewhen blown up to A4 size) and then e-mail them [email protected]

Our 2018 Calendar will be available to purchasefrom July onwards so keep a look out for the orderform in the next edition of Tidings to continue tomake this initiative an ongoing annual success.


P HOTO COM P E T I T I O N


Cancer in 2007, metastatic in 2010followed by chemotherapy. I returned tomy job which, although busy andstressful, I loved. I was a primary schoolhead teacher. Unfortunately, on holidayin 2013 I developed an abscess in mybowel and on return to the UK wentstraight to hospital with sepsis. They triedto reduce the abscess with intravenousantibiotics but unfortunately the nightbefore the planned surgery to remove it,it burst causing irreparable damage tothe internal and external sphinctermuscles in my rectum and anus.

Then followed a difficult ten months whenI was faecally incontinent. Various testswere done and I tried my best to work; as

you can imagine, this was fraught withdifficulty! After two episodes of near fatalsepsis the decision was made that I wouldhave a colostomy. This I had at the end ofJuly 2014 on the same day a group of myfriends went on a holiday that I hadorganised!

Everyone, including my surgeon and thestoma nurses, told me ‘my life would changefor the better’. It did not. From the onset mystoma (I named him Heisenberg after acharacter in the TV series Breaking Bad, he’snow been shortened to ‘H’) retracted and heconstantly leaked; during the day, in bed atnight, and I had many an embarrassingpublic leak. The stoma nurses triedabsolutely everything to sort this but we got

nowhere. I returned to my job but with theleaky H; this was not easy…I’d sometimeshave to dash out of taking an assembly or inthe middle of a Governing Body meeting,and I also couldn’t do any teaching.

I sought a second opinion with a differentcolorectal surgeon who was recommendedto me and in April 2015 he did a revision.The first time my new stoma worked heleaked and I could see he was still flushwith my skin. I felt utterly broken at thispoint as I still had the same problems withleaking. In June 2015 my surgeon movedthe stoma to my ascending colon on theright hand side of my body. Unfortunately,it was also retracted and the sameproblems were still occurring.

When I saw the surgeon in August 2015 hegave me the devastating news that therewas nothing more to be done and I wouldhave to ‘live with this as a lifelongcondition’. He also recommended I applyfor ill health retirement and said he wouldsupport my application. Meanwhile theGoverning Body at school had lost patiencewith the amount of sickness absence and

JJ & H on TourIn the hotel room in Sydney

Many people write about their anxiety andnervousness about travelling with a stoma so Idecided to write about an adventure I undertook lastyear. I will try to be brief about the medicalcircumstances which led me to undertake my trip.


HO L I DAY S A N D T R A V E L

I knew it was only a matter of time before Ilost my beloved job so I took theretirement.

I felt utterly and completely devastated atthe loss of my job and the change in myhealth. The biggest thing I felt I’d lost wasthe ability to leave the house withoutanxiety because of what ‘H’ might do. Atthis point I know I was in danger ofbecoming agoraphobic and never leavingthe house. With the help of a greattherapist, the stoma nurse, excellent friendsand the Colostomy Association Facebookgroup I decided to change my attitude and‘live’ with whatever H could throw at me! Imean I’d survived a public leak in arestaurant more than once, in the shoppingcentre, in an airport and so on. I found ithumiliating and embarrassing but realisedthat anyone who saw me wasn’t likely toever see me again. On a cold winter day Ichanged my leaky bag on the hard shoulderof the A1 with traffic slowly trundling pastbecause of an accident. By now I guess Ijust thought ‘the worst has alreadyhappened and I’d survived it so what now?’

At the turn of the year I decided to treatmyself to a trip to two places I’d alwayswanted to visit, Australia and New Zealand.Once I’d made the decision to go, the tripkind of took on a life of its own! If I wasflying via Singapore I may as well stop offto look at it, right? If I was picking up acruise ship in Sydney, Australia, I might aswell have some time to explore the city,right?! If my ship docked in Perth, samething, and as I flew back via Dubai, anotherplace I’d never been to, then I arranged astopover there too! My trip was going totake a month in all. Needless to say I wasincredibly excited!

What was lovely was posting on theColostomy Association Facebook Groupand very soon people began to share myexcitement asking for photos/posts etc. Ididn’t want to flood the page so with thehelp of others set up a Group within themain Group called JJ & H on Tour. (JJ beingthe initials of my nickname, and H justbeing H!) I was amazed at how manypeople requested to join and at its peak Ithink there were over 88 members!

I had great fun posting pictures and postsabout my adventures and received so muchresponse. When you travel solo you don’t

have anyone to share those ‘oh wow’,moments with. Well with JJ & H on tour Ifelt lots of people were sharing my wowmoments!

I had an absolutely fantastic time, fromgetting into the cockpit and sitting withthree dishy pilots when the plane wasdelayed in Singapore to swimming at Bondibeach. I adored Sydney and was beyondexcited when I boarded the cruise shipthere exhausted after three days of trying tofit everything in! I toured New Zealand andthe bottom coast of Australia. The highlightwas a two–day trip from Dunedin in NewZealand through the National Fjord Park torejoin the ship in beautiful Milford Sound.Just breathtakingly gorgeous!

H was his usual self but by now I felt I couldjust deal with him and move on. I had tochange my bag behind a tree in theNational Park with some bottled water. Stillto this day I don’t know what the guide toldeveryone on the coach to explain why I gotoff! I had an amusing moment, and a raremoment of gratitude for having a stoma;when the vacuum toilet system on the shipwas out of order for nearly 21 hours –apparently, the state of both public andcabin toilets wasn’t pleasant – it didn’taffect me!

Perhaps the best thing about my trip cameat the end. I asked that if people hadenjoyed following me on Facebook wouldthey donate a small sum to the ColostomyAssociation. I was overwhelmed whenboth my Colostomy Association friendsand my ‘home friends’ donated becausethey had enjoyed following my trip, and soastounded that donations hit over £700 forthe Colostomy Association! Again, thankyou to all who donated.

Finally, something I had not consideredwhen I wrote JJ & H on tour was the impactit would have on others with a stoma. I gotso many messages saying I had inspiredothers or given them the courage to explorefurther away from home. My favourite wasa message from a man who said: ‘In the sixyears my wife has had her stoma she hasrefused to go on holiday abroad. By thethird week of following your tour she saidto me: “If that lass, with her leaky stoma,can travel all that way on her own, I can goabroad.” We have booked a week’s holidayto Spain and it’s all thanks to you!’

Priceless. Don’t let the stoma stop you!

Janey Jane

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Thank you to Janey Jane for sharing herstory and proving that it is still possibleto travel to faraway places even with atroublesome stoma, and to herfollowers on Facebook for donating£700 to the Colostomy Association.

A daily swim

The tree trunk in New Zealand’s National Fjord park thatprovided cover for a bag change



The alarm went off early on the 29 July.My wife and I were Florida bound to fulfila promise we had made to ourselves andour daughter and her husband that wewould take our granddaughters to enjoythe theme parks once they were oldenough. Oh and to meet Micky! So howdid I get on as a colostomate?

Jennie and I were going a week early so wecould have a few days to ourselves and hadchosen to drive down to Key West thenback via the Everglades before reachingOrlando via Tampa.

Arrival at Heathrow was achieved withoutalarm and check in completed without fuss. Ihad checked in the night before online buthad been unable to print boarding passes sowe had to go through the process again.Seating was not an issue as we were travelingPremium Economy and seat allocation waspart of the deal. If you can afford the extraover standard economy I would certainlyrecommend this upgrade, bigger seats and anumber of worthwhile extras including twochecked cases on Virgin if needed. Mysupplies were split between two sets of handluggage and two checked cases.

Security beckoned. Since my operation Ihave flown a number of times and haveadopted the approach of not to tell. Thecolostomy is for them to find! My wife hashad hip replacements, which includes metalparts, and adopted the other approach. Shetold the security officers and was told thecertificates she had were not needed aswhen the scanner alarms went off shewould undergo a full pat down search.

Before the personal check, we had to getour hand luggage ready for the scanner. Allliquids must come out of the carry–on bagand go into a small clear bag for scanning.For me that meant the medical adhesiveremover and odour neutralizer plus thepersonal liquids and gels had to go into theclear bag and into the tray for scanning. Ihave never been asked what the adhesiveremover and odour neutralizer are for andtoday was no different. If you are thinkingof traveling you should note that there arelimits to the liquids that you can carry. Youare allowed up to 100ml of any liquid andif you don’t take it out as required you willhave it confiscated and you may even bestopped from flying. But it is no big deal,just a need to be aware and be ready.

I also had to take off my bum bag to put thatthrough the scanner as well. The bag was tocarry my papers, wallet, small change andmy mobile phone, except something wasmissing from it as I was to find out.

Now the walk through the dreaded arch.Jennie had gone through and wasundergoing the pat down search asexpected. I would be fine. Yes, you haveguessed it all the alarms went off and as theydid so my hand went to my pocket andfound – my mobile phone! Full search for meas well but ‘they’ did not find my colostomy!

I had not changed before security as mybag was nearly empty but I would need todo so before boarding. We were bookedinto the No 1 Travellers’ Lounge, so Ichanged my bag in the accessible WC there,a couple of hours later.

The flight passed without incident but againPremium Economy had benefits. As thenearest loos were shared with first class

there were a smaller number of peopleusing them than those at the rear, so easierto get into when required.

Entry in to the USA was without incident,but if going to the States make sure youhave your ESTA (Electronic System for TravelAuthorization) well before your departuredate. You won’t fly without it. Also be awarethat many airports now have automatedcustoms control. Easy to use if you followthe on screen instructions.

Preparation they say is everything. We wereto stay at a local hotel and I had worked outthe route and driven it using google earth afew times so I knew where to go and whatlane to be in. Just as well as we could notget the Sat Nav to work. My homework paidoff!

Sat Nav fixed next morning, all it requiredwas to see the sky (which it could notinside the car rental multi story), we set offon our journey. A new hotel each night for

Florida Trip



the next eight days. When I needed tochange during the day the US accessibleloos were a bit hit and miss. They arelocated inside both ladies’ and gents’ loosas a large cubicle, and you may not find awash basin. Rubbish bins were in the mainarea so disposal bag discreetly placed there.

Public restrooms are few and far betweenbut most main shops have them. If usingthe freeway go off and you will almostcertainly find something immediately. Ifusing Sat Nav that will get you back ontothe freeway afterwards.

I wear flushable bags but have given upflushing at home as I have encounteredsewer problems. As they suit me in otherrespects I have kept using them. I did notflush at the hotels but I did empty thecontents through the stoma hole as acourtesy to the hotel staff. Not that pleasantbut easily done. Disposal bags then left withother rubbish. I also followed this practiceat the villa we stayed in at Orlando as by theloo in the bathroom was a warning about

not flushing anything other than smallamounts of toilet paper due to theinadequacies of Florida’s drains. I took it asread that poo could go down as well!

And so to Disney and the other themeparks. Security! Bag checks and scanners atall of them. Sadly, a sign of the times. Againmy approach ‘say nothing’. The securitypersonal quite clearly saw my supply ofpouches but said nothing. Scanners werenot always compulsory but when I wentthrough: no issues. The mobile was alwaysin the bum bag!

Changing in the theme parks could be achallenge. Accessible WCs are inside themain rest rooms so get used by normals,but there are family rooms outside whichdouble as disabled. They get very busy, notleast as the parks attract lots of visitors withdisabilities, which is a good thing but…Ialways set off with a clean bag and mostdays I found I got away without changing.Going on the rides was fine but I did not goon the fast upside down roller coasters.

Then the highlight of the tour: SeaWorld’sDiscovery Cove and a close-up encounterwith dolphins. I had wondered should I tell?There are strict rules about the use of onlytheir approved sun cream to avoid watercontamination, but again I kept quiet. I didchange just before our allotted time slot.Being in the water here and elsewhere,including the pool at the villa, caused menot the slightest issue.

Time to go home and two flights, OrlandoMiami which went quite smoothly and noissues for me and then the security checkat Miami and for the first time Iencountered the new style body scanner. Isaid nothing as did the security staff but Idid have my fingers wiped over with a swabwhich went under a light which went greenand I was on my way. I have since foundout the finger test is for explosives andstandard procedure if they find what theybelieve to be a colostomy bag. The logic isthat if it is something else, the explosiveswill be on your fingers.

So came to an end a fabulous holiday. Iencountered no problems with mycolostomy. If you are thinking of going on atrip abroad and have worries, my advice isgo for it, just take a common sense approachand follow the advice in the ColostomyAssociation’s travel booklet.

Philip Young

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pack sufficient supplies for yourstay;

take all supplies and travel stomakit as hand luggage;

ask the airline in advance if youneed extra hand baggage for yoursupplies;

‘check in’ online 24 hours before departure to secure your preferredseat;

avoid food and drink that are likelyto cause upset or excessive windthe day before you travel;

pack all your normal medicationsand any that may help an upsetstomach;

carry your Travel Certificate withyou especially when passingthrough immigration or securityareas;

pack some form of electrolytereplacement solution in case youbecome dehydrated;

drink bottled water, avoid ice indrinks and use boiled or bottledwater to clean around your stomain countries where water could becontaminated; and

store your supplies in a cool place,out of direct sunlight.

Your Travel ChecklistOn top of all the normal precautions, like making sure your traveldocuments are in order, take copies of important documents with you incase the originals get lost or stolen.

The ostomate needs to remember to:

CA Booklets, Leafletsand Factsheets are

available

www.colostomyassociation.org.uk

Travel Advice

Having a colostomy

should not prevent

you from travelling

at home or abroad

Freephone helpline:

0800 328 4257

www.colostomyassociation.org.uk

TravelCertificate

Freephone helpline:0800 328 4257

Simply contact:

General Enquiries:0118 939 1537

Monday to Thursday 9am – 5pm and Friday 9am – 3pm

or

E-mail: [email protected]

or download from our

Website: www. colostomyassociation.org.uk

H


S U P PO R T YOU NG O S TOMAT E S

Our tenth birthday year came to anunexpected end with the power of the wider Breakaway family reallyhighlighted. Everyone pulled together tosupport one of the Breakaway mumswho was going through the worst timethat any parent could ever go through.

We always knew that Breakaway hadcreated some truly unbreakable bondsbetween families. What we didn’t realisewas just how much everyone really doesfeel connected, even to people that theyhave never met, either in real life or online. It was that power, that feeling oftotal togetherness that was almostoverwhelming at times. Something thatstarted on a wet weekend in Wales tenyears ago, had almost become this living,breathing creature.

Looking back, it’s because of the personalconnections, not just those that have metin real life, but the bonds and friendshipsthat have been forged in our closedFacebook Group. When we set up theGroup three years ago, it was because weknew that the helpline had run its course,parents needed the immediacy ofconnecting online. If they have a problemthey want to be able to speak to someonewho understands and can help there andthen. Not only that but it’s a great way forfamilies to get to know each other and thenconnect outside of Facebook. It’s nosurprise therefore that it was to theFacebook Group that people turned whenwe experienced what has to be the worstnews ever in the ten years of Breakaway.

One of the Breakaway kids had been inhospital for four months after straight–forward surgery hadn’t gone so well. Thingswere looking up and they were hoping tobe discharged. It was planned for the

following week when suddenly everythingwent wrong. We had a text from Mum tosay that her daughter had suddenly becomevery sick; her heart rate was very high, witha very high temperature and low bloodpressure. We instantly panicked. It soundedlike sepsis.

The next update was that they were lookingto move her to Intensive Care. The nextmorning a text came to say that she’d beentaken to theatre as her lungs had collapsed.All we could do was sit and wait. Thencame the text that no one wanted to read;her heart was malfunctioning and she wasbeing moved to Cardiac ITU and placed inan induced coma on full life support. Forten days her life hung in the balance.#teambreakway pulled together. We postedregular updates on the Facebook Group.Our families wanted to do something tohelp so a fundraising page was set up fordonations as that was all that most peoplecould do, being so far away. Almost £2,000was donated.

Families that were also inpatients or visitingfor clinic appointments went in to supportmum. Our trustees and professionalvolunteers travelled hundreds of miles toLondon to visit them. Scott, our design guru,produced a gigantic A3 poster full of all theGet Well messages. Ten days later, on theday that Julie visited, she was taken off lifesupport and woken up – we think it wasthe threat of Julie that did it! She made slowbut steady progress and was able to gohome early in the New Year.

It was the most awful time in her mum’slife, not knowing if her daughter wouldsurvive or not. She kept saying that theoverwhelming show of love and supportfrom Breakaway got her through those verydark days.

Mum writes:“If it weren’t for all the little lit hands that Ireceived during my daughter’s stay in theCardiac Intensive Care Unit of GreatOrmond Street Hospital, I wouldn’t bewriting this testimony. By little lit hands Imean all the luminous messages I keptreceiving on my phone during the darkesthours of my life. In retrospect, I have noidea what I was going through. All I knowis that every single message was like ahuman chain of hands pulling me throughit all. I was clinging onto my phone like mylife was literally depending on it. It was,because my daughter’s life was.

I have never felt such an overwhelmingwave of love and support. I was not onFacebook and yet messages werepouring in day and night, I was unableto process the enormity of what washappening and yet the closestBreakaway friends like the instantanonymous ones were there for me,silently understanding what I was goingthrough and sending a card, bringing asoup or putting together tokens offriendship, of that friendship that meantthat we would win this battle togetherand that we wouldn’t give up so easily.

The trip to America I promised her beforeshe was put into her induced coma was adesperate and helpless plea from amother trying to make sure her daughterwould fight through it all. I had no ideahow I would send her there, but I had topromise her that… and Breakawaymadeit happen. When my Sleeping Beautyeventually woke up, she was so surprisedby the work that had been put together forher behind the scenes. The giant posterwith all the messages from Breakawayfriends brought joyful tears to her newlyawoken face. Like fairy godmothers, theyall silently, appropriately, delicately andwarmly kept me going. It is all a blur in mymind, but all I can remember is the silverlining Breakawaywas relentlessly sewingonto my dark cloud. The cloud has gone,but the silver can still be seen in both mydaughter’s and my smile.”

It’s a time that we will never forget,traumatic for everyone, but it showed thatBreakaway really is more than the sum ofits parts. It’s a family, probably a very oddfamily, but a family none the less, and wewill always pull together when one of ourfamilies need that support. ■

Write to us or send adonation to:

Breakaway FoundationPO BOX 7982SwadlincoteDE11 1FB

Telephone:01283 240253Email:[email protected]:www.breakawayfoundation.org.uk

Donate online via:

http://uk.virginmoneygiving.com/charityweb/charity/finalCharityHomepage.action?charityId=1008990

More informationabout BreakawayFoundation.


S U P PO R T YOU NG O S TOMAT E S

JOSH On The RoadOn 8 June 2017 the JOSH team will beattending a Kidz to Adultz South event atthe Rivermead complex in Reading.

Kidz to Adultz is one of the largest, free UKexhibitions dedicated to children and youngadults up to 25 years with disabilities andadditional needs, their families, carers andthe professionals who support them.

There will be over 120 exhibitors includingJOSH, offering advice and information onareas such as:

v Fundingv Mobilityv Seatingv Bedsv Communicationv Accessv Accessible vehiclesv Educationv Legal mattersv Stylev Sensoryv Sports activitiesv Holidaysv Leisure and much more!

If you are interested in attending this majorevent, tickets are free and registrations can be made by calling 0161 607 8200 orby visiting www.kidzexhibitions.co.uk

Josh resources Do you know of, or are you a stoma carenurse that cares for children and babieswith bowel and bladder dysfunctions? Ourrange of resources explains stomas tochildren and includes colouring books,cuddly toys and comics. Our Josh snowleopard can be given to children pre or postsurgery. Not only can Josh provide comfortbut with details of our helpline on his tag,he reminds parents and carers that supportis only a phone call away. If you areinterested in finding out more about ourfree resources please [email protected] or call0118 939 1537.

In December 2016 we were delighted toattend the Birmingham Children’s Hospital

Christmas party for children affected bybladder and bowel dysfunctions. Our JOSHambassador, Aled, took along Josh theSnow leopard and each child was able totake one home.

Fundraising for JOSHJOSH is part of the Colostomy Associationand we are funded purely by donations.Your help and support allows us to carry onproviding a range of free services such asJOSH. If you are interested in holding acoffee morning, cake sale or similar to raisefunds for JOSH, please get in touch forinformation on fundraising. Any fundsraised for JOSH should be sent to theColostomy Association and clearly bemarked ‘JOSH’. ■

Junior Ostomy Support Helpline (JOSH)

4 2 57 T I D I N G S | S P R I N G 2 017 | 3 9

h h h ld d b

Our Junior Ostomy

Support Helpline for

carers of children

with bowel and

bladder dysfunctions.

We want to hear from you!

In the next issue of Tidings we would like to makethe JOSH page more exciting for our youngerreaders.

Send us your photos, drawings, poems and morefor us to feature…perhaps you’ve travelled abroadwith your cuddly JOSH snow leopard and have apicture with a famous landmark or have somethingelse exciting to share.

Contact us at [email protected] and let us knowwhat your child would like to see on this page. We look forwardto hearing from you.


R E A L L I V E S

For many years, I suffered with IBS andthen I developed diverticular disease.This was controlled by watching my dietand taking Fybogel which really helped.Over time it gradually got worse andeventually I was taking antibiotics almostevery month to combat the infection. Idid not realise how unwell I looked andhow much weight I had gradually lost.Eventually the oral antibiotics did nothelp and this resulted in me beingadmitted to hospital to have antibioticsintravenously.

The infection did not clear up andeventually I had to have an emergencyoperation as my bowel was blocked. I wasvery unwell and in a great deal of pain, onso much morphine that I was not fullyaware of what was happening. Before myoperation, the stoma nurse came to markme up as the surgeon had informed methat I may need a temporary stoma.

I was 62 years old and accepted having astoma very easily as I was relieved to be outof pain. After a further week in hospital Ireturned home but was very tired andunable to walk far, so needed a wheelchairto get into town for the first few weeks. Thestoma after care was marvellous. Salts inBournemouth supplied all my bags andother items and were so helpful wheneverI rang. Delivery to the house was brilliant.The stoma care nurses at WinchesterHospital were extremely helpful andespecially supportive in the early days. I hadbeen so ill that I had lost a stone in weightbut as my appetite improved I have put theweight back on. Then my stoma bagbecame very uncomfortable; I had notrealised my stoma had changed shape sothe hole in the flange needed to be bigger.

I found stoma bag covers very useful and Ialways used scented nappy bags fordisposal of used bags especially in publictoilets. Elasticated trousers were the mostcomfortable and Damart produce a goodrange. Having a stoma did not stop medoing anything. I was soon back swimming;I had a ruched and patterned swimmingcostume. Then I went back to the gym andto my Pilates class. I always remember towear a support belt when doing theseactivities.

Six months after my surgery I had anappointment with my surgeon and toldhim I did not want a reversal as I was nolonger in pain. He arranged to see meagain six months later to make sure I wascertain. My stoma nurses told me that overthe next year I would change my mindseveral times, about having a reversal. ThenI began to have skin problems and somedays, mostly in the evenings, I had awfulirritation. I eventually decided to have areversal.

As I had lived with a stoma for eighteenmonths, I was quite anxious about theoperation. In November 2016 I went intohospital and the operation was a success. Istayed in for five days and had very littlepain and was only on Ibuprofen andParacetemol. Obviously, I was concernedabout how my bowels would adjust and

just hoped everything would work normally.I found I needed to go very frequently in thefirst two weeks. This resulted in anextremely sore and itchy back passage. Ilooked on the internet and discovered thiswas quite common. The pharmacistrecommended Preparation H cream andtoilet wipes which are available over thecounter. These were brilliant and within afew days all was fine.

It took about three weeks to retrain mybowels and they are completely back tonormal now but I still avoid mushrooms,sweet corn and too many onions. I gavemyself time to recover and took things veryeasily. Once home I was very tired andsleeping well at night and l often had amid–afternoon nap.

It is now two months since my reversaloperation and I can’t believe how well I feel.I am very fit and not overweight so I thinkthis has really helped my recovery. I amalready swimming and doing Pilates andlight gym work. I now feel ready to improvemy stomach muscles.

I feel very fortunate to have been able tohave a successful reversal. I knew nothingabout stomas before my operation but itwas not as bad as I imagined it to be. It isjust a case of getting used to your bodyworking in a different way. I think we areso fortunate in this country to have suchmarvellous surgeons and amazing medicalequipment available through the NHS. It isso different for thousands of people acrossthe world. I cannot imagine having astoma and no proper equipment. Thesepeople’s lives must be awful as they haveto improvise with the little they have.

Ann Coleman

Diverticulitisand eighteen months

with a stoma

j t h d thi ld k ll

4 2 57

mestspt

When she had a date for her reversal,Ann was careful not to order too manystoma bags, but still have enough in caseher operation was postponed at the lastminute. She was left with about fortybags which she posted to Stoma Aid(see pp 42–43).

S TOMA A I D

In the winter edition ofTidings we celebrated thefirst anniversary of ourStoma Aid project. As youmay recall, we reportedhaving sent a hugequantity of stoma bags todeveloping countriesacross the globe. Suchlarge numbers areobviously impressive, butit’s the human storiesbehind the project thatreally drive home thevalue of our work.

One Beneficiary’s Story…The case of Anil Jowaheer, who lives inLondon, and his relative Sada, inMauritius, illustrates the value of StomaAid well. In the spring of 2016, Sada beganto suffer from altered bowel habits. Acolonoscopy and biopsy revealed amalignant tumour. Thus, with littlewarning or time to prepare, Sadaunderwent an anterior resection of therecto–sigmoid colon. A traverse colostomywas also formed. As with many countriesin the developing world, Mauritiuspossesses the surgical expertise to carryout such procedures, but lacks the sort ofpost–operative support we regard asnormal in the UK. It was on this issue thatAnil contacted Stoma Aid.

Quite simply, the cost of stoma supplieswas such that they were beyond Sada’sreach. The situation was aggravated further by the position of his stoma. Formed just above the vertical abdominal


S TOMA A I D

incision line it meant that frequent bagchanges were required. Luckily we wereable to help, putting together a package of supplies including colostomy bags,adhesive removers and skin wipes. Thispackage should contain sufficient items tosee Sada through until his anticipatedreversal operation, which is scheduled forthis Spring.

Anil recently got back in touch to tell uswhat an incredible difference theintervention of Stoma Aid made to Sadaand his family. As Anil said, the surgery wastraumatic but life afterwards has beenmade just a tiny bit easier and morebearable thanks to everyone that has kindlydonated to the project.

Thousands of people have alreadybenefited from Stoma Aid and further lifestories will follow in forthcoming editionsof Tidings.

Behind the scenesOur voluntary team in Bolton do all theycan to ensure the donated items reach theright recipients. Various checks are carriedout and wherever possible UK basedreputable charities are used to distributethe supplies abroad, direct to those on theground.

Collections by Local Support GroupsThe following support groups are happy to act as collection points for donations of suppliesfor Stoma Aid:

Coventry Stoma Support groupAble to collect in the Coventry areaContact Martin Robbins on 07947 385 643 or [email protected]

Milton Keynes Stoma AssociationAble to collect in Milton KeynesContact Thia Cooper on 01908 679 295 or [email protected]

Shropshire B.O.T.S (Bums on tums)Able to collect within ShropshireContact Irene Constable on 01691 238 357 or [email protected]

Solent Ostomates Support GroupAble to collect in the Southampton areaContact Carole Summer on 07527 707 069 or [email protected]

Stevenage OstomisticsAble to collect in Stevenage areaContact Judy Colston: 01438 354 018 – [email protected] Alfred: 01767 616 958

Wessex Stoma Support GroupAble to collect in South Wiltshire, West Hampshire and North DorsetContact Kenneth Edwards on 01722 335 351 or [email protected]

We are immensely grateful to these support groups for their generosity. If your own supportgroup is also willing to act as a collection point and will also transport donated items upto the warehouse in Bolton, please let us know.

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.

DO NOTOTO b t

Stoma Aid will accept the following:

All types of stoma appliances for adults and children includ

ing:

● Closed bags

● Drainable bags

● One piece bags

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

Additional Products (which must all be at least 6 m

onths 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, deodorants, prescr

iption 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.



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.

Enter our Caption Competition5 lucky readers will win a set of both bags by entering our caption competition.

For a chance of winning, tell us what the conversation between the man and the worldmight be in no more than 50 words.

Please send your entry to [email protected] or post youranswer into Giovanni Cinque at the address below. The competition closes on30 April 2017 and winners will be announced in the next issue of Tidings.

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

✃

Help Stoma Aid witha Bag for Life


0 N L I N E S U P PO R T

In November 2016 we were invited tovisit the new Welland factory in Crawley.Having been to other meets with TheCliniMed group I must admit I wasexcited. A factory tour, on the face of it,doesn’t sound very exciting. Or so Ithought. I have been to a number ofstoma appliance factories now and theyare absolutely fascinating. We ostomatesrely 24/7 on these products to live ourlives comfortably and seeing what goesinto their manufacture is really veryinteresting.

We arrived to a lovely buffet lunch and metthe many staff who had kindly given up theirSaturday to host our group. Chris Primitt,MD of Welland and Marc Blamire, Marketing& Regulatory Affairs Director Designate forCliniMed/SecuriCare welcomed us to thevery impressive new premises and gave abrief overview of the company. Then it wastime to don the flattering (not) paper coatsand mob caps ready for the factory tour. Wewere split into two groups and shownaround the factory, stopping at each sectionfrom the beginning of the process whereflanges resemble a big lump of play–doh, tothe slick automated production of a bag,and then the finished product, watchingevery single appliance being checked forquality. The thing I am most impressed withevery time we visit manufacturers is the caretaken to ensure these products are as goodas they possibly can be for the end user. Allthe staff I met, from management to shopfloor factory workers really seem to ‘get’how a good product allows us to live ahappy and confident life.

Following our tour, we returned to themeeting room for tea and coffee. Some

might say I had a chocolate or two but don’tbelieve them (LOVELY spread Welland, youknow me so well!). We then had aninteresting talk from Moira Evans, ProductDevelopment Clinical Lead, about a surveycarried out by users of the WellandFlushable bag, followed by the opportunityto ask questions about this and otherproducts.

To finish off the afternoon we were invitedto take part in an ideation session with theResearch and Development team. Say nomore, a group of outspoken ostomatesbeing asked to voice their opinion on thingswe would like improved on stomaappliances – we LOVE to give our opinionson what works and what could be better.We split into three groups to come up withour ideas which we then ranked inimportance. The groups then fed back andit was interesting to see what came up.Generally, the groups agreed; problems likepancaking, sore skin are issues important tous, along with various other ideas forimproving products. We are the ones livinglife with a stoma and it feels good to haveappliance manufacturers listen and take onboard what we think. After all, WE are theexperts really!

We left Welland for the very short walkback to the hotel and as we left we wereall given a lovely bag with all sorts ofgoodies inside – another thing that getsme over excited. I really am easily pleased!We met back at the hotel for drinks anddinner, costs very kindly covered by ourhosts. As has become tradition now,Facebook Group admins and CliniMedprovided prizes for a raffle, including aunique version of the group Mascot, Tomas

Bear. Some members kindly donated backtheir deposits paid to hold their place onthe meet and along with the raffleproceeds we raised a brilliant £300 forColostomy Association.

A lovely evening continued and as always, Iam delighted to meet members for the firsttime as well as catch up with old friends. Iam hugely proud of how the Group cometogether online to offer support to fellowostomates, and I know I have said it before,but to meet members in person is the icing on the cake. I’ve not once beendisappointed when meeting a member ofthe Group. And oh how we laugh and laughat these meets – they really are very special.Many thanks go to all Group members whocame along to the event and I would like tosay a very special thank you to FrancesChalmers, Research, Education and MarketDevelopment Manager at CliniMed. Shewent the extra mile to organise the meet upto suit our needs and along with her teammade it a very enjoyable, informative andsuccessful day. As well as those I’ve alreadymentioned I would also like to thank thefollowing for giving up their time towelcome us:CliniMed / SecuriCareLoretta Bramley–BrantCatherine HaywoodMoira EvansKatherine LadaJennifer Pagan

The ideation session was run by:Mark Newton (head of the department)Kim FramptonChris BrayJack HopperTheo Poole

Also from Welland:Chris Primett (MD)Alison Brighton (PA to the MD andorganiser at Welland)Marketing attendeesSam Jackson (Sales and MarketingDirector)Claire MarsdenLydia Downey

In November 2016 we were invited to might say I had a chocolate or twtwt o but don’t

AatatobidtaMcsC

Colostomy Association Facebook Group

The CA Facebook Groupare out and about again!

T I D I N G S | S P R I N G 2 017 | 4 5

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.

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:

Postcode:

Tel:

Email:

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:

• A copy of your prescriptionor delivery note as proof ofeligibility

• Passport photo x 1

• Payment – cheque

Note: Payment can be taken overthe telephone if preferred.

Alternatively, the form can bedownloaded from our website:www.colostomyassociation.org.uk

Please allow 10–14 days fordelivery – thank you

�

22/02/2017 10:28 Page 1


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

Why does the skinaround the stomabecome sore?Skin around the stoma, known asperistomal skin, can become sore formany reasons. Firstly, it may be due tostool getting onto the skin which can then‘burn’ the skin making it sore. This is oftendue to the template used for cutting thehole in the bag’s adhesive flange beingtoo large and leaving skin exposed to thestomal output. Another reason is that thebag may be leaking and again thisexposes the skin around the stoma to thestool. This is easily remedied in that achange in template size may by itselfsolve the problem and the skin will healor it may require short term use ofadditional products such as barrier sprays,powder or seals. Another reason for soreperistomal skin may be an allergy to theadhesive of the bag and again this iseasily solved by changing the bag type toanother product.

How can I prevent myskin from becomingsore?The easiest way to prevent skin frombecoming sore is to ensure the templatesize fits correctly around the stoma; theadhesive of the bag should be cut so thatit fits snuggly around the stoma with agap of 1–2mm only. The stoma canchange shape and size, especially in theearly days after surgery and if you lose orgain weight, so the template should bemeasured regularly. Your stoma carenurse specialist can show you how to dothis. You also need to change the bag atthe correct intervals. Too frequent bagchanges can lead to trauma to the toplayer of skin causing soreness and tooinfrequent changes can increase thepotential for leaks.

When is it importantto consult a stomacare nurse?The skin around the stoma should look likethe skin on the opposite side of theabdomen. If you notice that it is red or soreyou should check the template size toensure it is fitting as above and if necessarycut it to the correct size. Hopefully then theskin will settle but if it does not improvethen contact your stoma care nursespecialist. If the bags are leaking or you feelthat you are using the incorrect product andthey are causing the skin to become sore,then you need to see the stoma care nursespecialist to try to resolve the issue.

What can I do to helpmyself until I can seea stoma care nurse?As before you need to ensure that thetemplate is cut to the correct size and thepouches are changed regularly but not toooften. If the pouches are leaking you needto change them immediately. As soon asyou notice a problem you can telephoneyour stoma care nurse specialist and theywill advise what to do until they can seeyou. This may involve you collecting aproduct from the hospital to trial or theymay arrange for a company to deliver somesamples to you at home.

How may a stoma carenurse treat sore skin? There are many products that the stomacare nurse specialist can use to treat skin soreness, including barrier wipes or sprays, powders, seals and of coursemany different types of bags. The stomacare nurse specialist has a great deal ofexperience to advise you on which productto use but may need to see you severaltimes to ensure that the product is workingas it should and if not to be able to changeit for a different product.

Wh d th ki Wh i it i t t

Julie Rust answers your questions about

skin careUse of AdditionalProductsMany stoma companies not onlyproduce pouches but also a widevariety of additional products.These include such things as:

v Adhesive remover in the form ofsprays or wipes. They help toease the adhesive flange awayfrom the skin without causingtrauma.

v Seals in a variety of sizes andthicknesses. They help to smoothskin which has creases, to absorbfluid secreted from skin which issore and wet, and are used toprovide security.

v Paste which comes in a tube. Itcan be used to fill skin creasesand ‘moats’ around the stomawhich will help adhesion.

v Barrier film in the form of sprays,wipes or creams. They provide aprotective barrier for those withsensitive or irritated skin.

v Flange Extenders, which areadhesive strips. They are usedaround the flange so that theadhesive surface is increased insize to give added security.

Often these products i.e. adhesiveremover or barrier wipes, flangeextenders or pouch deodorants aregiven out as samples. However, asnot all of these are essential orsuitable for all patients, it is advisableto contact your stoma care nurse tosee if there is a clinical need for theuse of the product.


F ROM 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 have had a colostomy for nearly 20years and an ileostomy (following aproctocolectomy) for the last threeyears.

Because of back and knee problems Iam finding it very difficult to empty mybag. The problem is that I can no longerstoop or bend my knees to reach thetoilet. The result is that the waste isgoing all over the seat of the toilet andthe surrounding floor. I have tried sittingon the toilet to empty my bag but I amsitting too far forward for the bagopening to reach the bowl.

Is there any advice you, or any readers,can give to help me with this problem?

A: You can angle the pouch towards themiddle so that when you sit on thetoilet seat (you would need to sit quitefar back) you can empty the pouchmore easily. A change in products maybe useful; a pouch with a longer ‘tail’ iseasier to empty. Alternatively, a two–piece system may be an option so thatthe pouch can be removed withouttraumatising the skin, it can then beemptied and reapplied to the baseplate.I would recommend arranging a reviewwith your local stoma care nursespecialist so that they can advise youfurther.

When a similar question was posted inthe Colostomy Association FacebookGroup, the most popular response fromFacebook members, including those

who are wheelchair users, was to line asmall bowl with toilet paper, empty thebag into that, then empty that bowldown the toilet.

Q: I have an ileostomy and have nowdeveloped a painful prolapse. Mystoma nurse showed me how tomassage it down (with the bag off).However, no matter what I do, it doesnot remain down. It is the size of thewhole pouch and moves constantly. Iam very frightened. I belong to anostomy group, and nobody there haseven heard of a prolapse.

A: A prolapse of the stoma occurs whenthe bowel protrudes through the stomalopening in the skin to a greater extentthan was intended. As long as thestoma is a healthy colour with no soreareas on the stoma or surrounding skinand is acting well they are often notoperated on. A prolapse can be reducedbut will never remain reduced, as when

you tense your abdominal muscleswhen standing, coughing or lifting yourhead and shoulders off the bed it willprolapse again. The only way to resolvethis completely would be for a reviewby your surgeon who may be able toamputate the prolapsed bowel andrefashion the stoma. A review by yourlocal stoma care nurse specialist mayhelp with regards to management.

Q: My wife who is in her late eighties hashad Parkinson’s disease (PD) for morethan 20 years and I (her carer) am inmy early nineties!

As a result of a rectal prolapse abouttwo years ago, she had a colostomy.And, probably due to the PD, her colonhas prolapsed to such an extent(typically six to seven inches) that fittingthe pouch has become very difficult.

I found a remedy for this was to put alubricant in the pouch thus allowing theprolapsed stoma to slide into it. Thisallows me to position the bag beforeattaching it to the skin.

I would appreciate any comments andalso be most interested to hear ofanyone who has experienced thisproblem.

A: You seem to manage this problem welland the tips you have given may wellhelp other patients with a prolapse. Theimportant thing is that the template is agood fit to prevent sore skin around the

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 every issuewhich has been published since then.We look forward to many more years ofpublishing her very sound advice.

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

Julie Rust became TiTiT didi idid nini gs Nurse in

DearNurse


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

prolapsed stoma and also to ensure thatthere is no trauma to the stoma itself.Also make sure that the stoma ishealthy and acting well. If you have anyconcerns or you want any reassuranceyou can arrange to see your local stomacare nurse who will be able to advisewith regards to products etc.

Q: I have had a colostomy for two years.During the past nine months, I havesuffered an offensive green dischargefrom my rectum which was firstlytreated with Mesalazine suppositoriesand then enemas. I could not retain thelatter and so am now again using thesuppositories to help control it.

Can you please tell me how commonthis is? I would also like to hear fromanyone else who may have this veryunpleasant problem.

A: If the surgery entails leaving a rectalstump in place then there is thepotential to pass mucus from therectum and many patients have thisproblem. This may be clear ordiscoloured but may have an odourespecially if the surgery was done forinflammation, Crohn’s disease,ulcerative or defunctioned colitis orproctitis. Controlling the discharge canbe difficult for some people and the useof suppositories or enemas can bebeneficial to empty the rectal stump orto reduce the inflammation. I wouldsuggest a review by your GP orconsultant to see if there is anythingelse they can offer, whether this bemedication, or possible surgery toremove the rectal stump, which wouldmake the stoma permanent.

Q: I had my stoma in 2011 when I was 54and have had very few problems apartfrom a parastomal hernia which was

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

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Reply to ananswer onthis page in the lastissue ofTidings

Dear JulieI was very interested in your response to my querypublished as the first letter on your Dear Nursepage in the Winter edition of Tidings. However, Iwas even more interested in the article aboutgranulomas where you ‘hit the nail on the head’.I had never heard of granulomas before but Iactually have three. You wrote that they can bepainful when touched and I realise this is myproblem. The weight of bedclothes when I am lyinghorizontal add pressure on the stoma area andthus cause discomfort and burning. I have spokenwith a stoma nurse at the hospital and am beingreferred back to them for further investigations.Thank you so much for such a useful article.

successfully repaired last year. RecentlyI have experienced bleeding when Ichange my bag. It is from a small soreon the skin close to my stoma. I amreluctant to use any cream because thismay affect how the bag sticks to myskin. Can you suggest anything that willhelp this sore to heal?

A: There are many reasons why you wouldget a sore or ulcer on the peristomalskin and I would advise a review by yourlocal stoma care nurse specialist so thatthey can assess the sore, identify thecause and provide advice with regardsto the correct treatment. Hopefully thiswill be a simple use of additionalproducts such as powders or seals or achange in appliance.

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.



Wind and ballooningA colostomy does not mean that we aremore likely to produce wind; it’s just that itis not possible to control when it is expelledthrough the stoma. In the early days afterstoma surgery it is normal to pass morewind and this may cause sudden noises. Asthe bowel settles into a routine thisdecreases and becomes much lessnoticeable.

Most people will be aware that eating somefoods can result in more wind; the mostcommonly quoted example is beans. Thefood we eat passes down to the stomachwhere digestion begins. This continues inthe small intestine and nutrients areabsorbed into the body. The undigestedremains, fibre and resistant starch, pass intothe large intestine (colon). Here they arefermented by bacteria to produce gas whichpasses out of the body as wind.

Foods which contain resistant starchinclude wholegrain seeds, sweetcorn,muesli, green bananas, garlic and onion.Resistant starch can also be formed whenfoods are cooked and allowed to cool downbefore being reheated. Cutting down onthese foods, ready–meals containingpotato, pasta or rice and oven chips or otherpreheated potato products may help toreduce the amount of wind.

Some people find that that Brussels sprouts,broccoli, cauliflower and cabbage can causewind. Remember, however, that everyone isdifferent. A diary recording what you eat andwhen you experience wind can help toidentify any foods which may affect you.

Other tips to help reduce the amount ofwind:

Eat regularly.

Chew your food well.

If you use artificial sweeteners orsugar–free foods check they don’tcontain sorbitol.

Cut down on fizzy drinks.

Probiotic drinks have the potential tochange the type of bacteria in the colon sothey may help to reduce the amount ofwind and may be worth a try. Peppermintoil capsules, may also help.

Although changes to the food that you eatmay reduce the amount of wind it isunlikely to eliminate it altogether. Windfrom a stoma passes into a bag and isdeodorized as it is slowly released throughthe filter. As we all know, however, somefilters are more efficient deodorizers thanothers. If you find you are having a problemwith odour it may be worth trying adifferent bag.

Everyone with a stoma will have heard ofballooning, where wind becomes trappedinside the bag causing it to inflate. Thisproblem was much more common in thepast when stoma bags did not have filters.So that wind could be released withoutchanging a closed bag or disturbing theseal, some people chose to use two–piecebags as the bag could be unclipped fromthe flange, a process which became knownas “burping”. Those using a drainable bagcould release wind through the opening atthe base of the bag.

Ballooning can still occur with modernappliances, if the filter becomes blocked.This is often due to the filter getting wet. Ifliquid or semi–solid stoma output comesinto contact with the filter this can cause itto block. A solution may be to find adifferent make of bag where the contentsof the bag are less likely to come intocontact with the inside of the filter.

The sticky patches, that come in your box ofstoma bags are designed to keep theoutside of your filter dry. If you leave yourbag on while you are in the bath or showeralways stick one over the filter, and do thesame when you go swimming. When youcome out of the water dry your bag carefullyand remove the sticker. Most people leavethe sticker off at all other times to allow anywind to escape. It may be, however, thatyou have found that keeping a small

amount of gas in the bag helps to preventpancaking. In this case, any excess gas canbe released when needed by peeling backthe sticker.

Many of you may have heard warnings ofstoma bags ‘blowing up’ on aeroplanes. Ascabin pressure is maintained slightly lowerthan it is on the ground any gas or airtrapped inside an airtight bag will expand.In the days before stoma bags had filters itmay have been the case that stoma bagsbecame inflated. But not today.

Modern filters mean that we can all fly todistant destinations without worrying thatour bag will ‘blow up’ on the plane. Justavoid eating a whole tin of baked beans theday before you travel and make sure yourfilter is at its best – it’s a good idea to puton a fresh bag before you board the plane.And if you usually cover your filter with thesticky patch leave it off for the flight.However, if you normally produce a lot ofwind and are still worried that your filterwon’t cope there’s always the option ofusing a drainable or a two–piece appliance.But please don’t let these tales of outdatedbags ‘ballooning’ prevent you for travellingby air. Seasoned travellers, who regularlytake long–haul flights assure us that itdefinitely isn’t a problem and I agree. On a 22 hour flight to Australia my bagbehaved just as it does on the ground…noballooning at all.

Rosemary Brierley

From One Ostomate to Another

The column where ostomates share their experiences and pass on their hints and tips

LO S TOMYAS SO C I AT I O N O RG U K

If you have an experience or anecdoteyou would like to share or hints and tipsyou’d like to pass on to other peopleliving with a stoma:

e–mail:[email protected]

or

Write to:The EditorColostomy AssociationEnterprise House, 95 London Street,Reading RG1 4QA


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

| | |

Dear EditorJust read about how you wanted storiesabout other reasons for colostomyformation. Two years ago, I went forroutine surgery for endometriosis.Unfortunately, three days later I wasrushed back to theatre with a perforatedbowel and needed a Hartmann’sprocedure. I spent three days in the HighDependency Unit and ten days in hospital.

Due to the extensive endometriosis. I havedecided not to have a reversal. Thesurgeon cannot guarantee trouble freesurgery and I cannot risk things goingwrong again.

After reading your magazine I pushed totry irrigation and this has worked very wellfor me. I irrigate daily and wear a pluguntil my next irrigation is due.

Unfortunately, I had an episode of bowelobstruction two months after surgery and was advised to go on a low residue diet which has prevented any furtherobstructions. The only change I made wasto become a meat eater, after 32 years offollowing a vegetarian diet.

I have a great life. I tried online dating, andthen met my lovely partner throughfriends, so having a stoma has not affectedmy love life. I travel the world with myirrigation kit: Canada, Iceland, Thailandand Spain. What surprises and worries myfriends the most is my love of white jeans;I have five pairs! But I have confidence inthe irrigation. I listen to my body andalways have emergency supplies with me.

Julie (age 55)

Dear EditorMy stoma was formed following anemergency operation to sort out a

volvulus, or twisted bowel. In March 2016,my abdomen suddenly became verybloated and mildly painful. The next daythe pain had intensified. My GP thought theproblem was just constipation, andprescribed Movicol. When this did notachieve the desired result and myabdomen was getting more swollen andpainful, she suspected that I had a bowelobstruction and rang for an ambulance. Atthe hospital, a CT scan confirmed that I hada volvulus and needed an emergencyoperation. They could not guarantee that Iwould survive.

The operation took five hours and I awoketo find that I had an ileostomy and amucous fistula. I was told that a 20cmlength of bowel had been removedbecause it had died due to loss of bloodsupply. I spent the next two days in theCritical Care Unit followed by another twodays in the Enhanced Care Unit. Then I wastransferred to a ward where the outputfrom my ileostomy was monitored. To slowthe output I was put on Loperamidecapsules. Although the output remainedfairly high I was allowed to go home afterabout another two weeks.

In hospital, I had leakage problems but,with the aid of my stoma nurse andexperimentation, I found a secure systemwhich I still use. It comprises a Hollisteradaptor ring with a Hollister convex maxidrainable bag. Both are cut with a 38mmhole. To add more security I fit twoColoplast elastic tape half–moons on theouter edge of the pouch.

I went along reasonably well until mid–Julywhen one day I noticed that there was nooutput in the pouch. Suspecting a blockage,I called an ambulance. A CT scan confirmedanother volvulus. I was starved for five daysto see if it would sort itself out but it didn’t

and so I went under the knife again. Iwent through the same routine as beforeand was released after nearly threeweeks.

The whole experience has resulted in mebeing about three stone lighter thanbefore the first operation. I have beentaking Fortisips and eating well but Icannot put back any of the lost weight.I’ve seen a dietitian and been put onVitasavoury soups so hopefully they willhelp. Also, I have been found to haveanaemia so am on iron tablets.

Like many people, I suffer badly fromballooning. The Hollister filters are notvery effective. I like the equivalentColoplast filters better but have foundtheir adhesive to be less secure so I’vestayed with Hollister. I have baths with thebag in place and dry it with a towel andmy wife’s hair dryer.

I will probably have my ileostomy closedthis year and my mucous fistula willbecome a colostomy. Having just onepouch to attend to will hopefully makelife easier for me.

RegardsBarrie Vinten

Dear EditorI decided to write to warn othercolostomists about a problem that Irecently suffered as a result of not beinggiven adequate information by thehospital.

I was scheduled to have a colonoscopy atmy local hospital. I was sent, in very goodtime, a letter telling me what to eat andwhen, what to drink and when, which ofmy tablets I should take and when and so

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 52, COLUMN 1

R



5 2 | T I D I N G S | S P R I N G 2 017 | WEB S I T E WWW CO LO S TOMYAS SO C I AT I O N O RG U K

forth. With the letter, I was supplied twosachets of a solution called Moviprep, andinstruction on when to take it.

I was instructed to mix one packet withwater at 17:00 hrs and drink it. The secondsachet I was told to mix and drink at 19:00hrs. I was told that this would clear out mybowel by 23:00 hrs. What it did not tell mewas that these were generic instructionsand assumed that I had a normal colon.

The time between taking my first sachetand about 3:30 am the following day washell! The output from my bowel affectedthe stoma bag glue and it kept coming offmaking a mess of my clothes, the floorand the towels that my long–sufferingwife kept giving me to try and stem theflow. This carried on, almost withoutrespite, until the early hours of the nextmorning. By the time I arrived at thehospital I was cross, exhausted andextremely frustrated. Although the staffwere apologetic and understanding I didnot feel that they really understood theproblem.

I would recommend that anyone who hasa similar procedure booked takes themedicine much earlier, say 14:00 and16:00 hrs and that they have a readysupply of drainable pouches or anirrigation belt with sleeves. Finally, do notgo far from the toilet! It would also besensible to talk to a stoma nurse to getadvice on best practice.

RegardsSimon Jones

Editor’s note: The Colostomy Associationbooklet, Colonoscopy through the stoma,provides advice on how to cope with thebowel cleansing required the day before,as well as describing what happensduring the colonoscopy procedure.

Dear EditorIn March 2013 I was rushed to hospitaland had an emergency operation and hada colostomy.

Adverts tell people to see their GP if theyare concerned, but if the GP does not takeit further what do you do? I went to my GPthree times and each time was told tohave a blood test. I asked him to send meto hospital for some tests and he said thathe had no evidence for that. I told him Iwas going to the toilet more and one timethere was some blood.

I had colon cancer and I was in hospital for eight weeks. When I came round inIntensive Care the surgeon said if they hadnot got me into hospital when they did Iwould not have been talking to him.

Yours sincerelyG Miller

Dear EditorWhen I was four I was diagnosed withdiabetes. I thought one life–long illness wasenough. Then at 23 my life changed again.What I thought was a stomach bug turnedout to be a lot worse. I had this badstomach for a week and then passed blood.My GP thought I had piles. In total I sawthree different doctors and had loads oftests. Nothing.

In April 2015 I had no energy. I couldn’teven get off the sofa, and knew I had to goto hospital. My stools were like water sothey put me on a steroid drip. I was inhospital for a week and they diagnosedulcerative colitis. Finally, it hit me that I hadanother life–long illness.

I was discharged on oral steroids and toldit would be hard because I had diabetes;the steroids would affect my blood sugarlevels. I gradually reduced my steroids butin June the colitis flared up again. Samestory: back onto a steroid drip and home ona high dose of oral steroids withinstructions to work my way down, but thecolitis flared up again. Doctors gave me theoption to have Infliximab, a slow acting dripevery four weeks. I had no other choice.

This worked to begin with and I went back to work. Then in September I had areally bad flare up and was in hospital for the fourth time. Because of mydiabetes nothing was working. Anoperation and an ileostomy bag seemedthe best option. Being a chef I couldn’thave the operation in December, mysurgeon was on holiday in January, so itwould have to be February. The date wasset for the 19th, my birthday!

Then I was told that I couldn’t have the opas my blood sugars were too high due tothe steroids. I felt so down that I justwanted to give up. My new date was 29March 2016. My op lasted four hours and Iwas in hospital for two weeks; it was hardbut I knew I could do it. I had such anamazing team at Peterborough Hospitalwhich helped me through. I can’t thankthem enough.

Since then I have never looked back.Having this bag is the best thing that’shappened to me. Yes, it’s not nice but I couldn’t live with how I was before. Backto working 60 hours a week cooking in abusy kitchen.

Hope my story helps. Just never give up.

Steven Melton

Dear EditorInteresting reading your wonderful Tidingsand the travels of Len Faulkner. From onlypersonal experience I find that ladies havethe most confidence to travel and swimand certainly not worry about having astoma and a bag.

Personally, I am not against folk knowing,privately, that I could have to make a dashto the toilet or need a stop on a tour, butit is seldom required and certainly only thetour guide needs to know. O.K. there havebeen emergencies like my bag breakingloose on Lake Galilee and a ‘surge’ ofmovement in Morocco but you overcomesuch things and the less fuss the better.

Leakage in general is now nearly a thingof the past with the realization that adrainable bag makes life much morenormal. With a hernia, the light convexbags have solved my problems and addedto my confidence.

My colostomy is not going to stop medoing anything I want to do. I have beenswimming in the Red Sea and twice in theDead Sea. I am a performer and wear neatclothes and bright colours and it’s greatwhen my close friends completely forgetthat I am any different from them.

I travelled to Lithuania recently with justhand baggage and had no problemscarrying medical necessities. You DO haveto plan ahead but there is a whole worldout there to explore. Go for it. Life doesn’tstop with a colostomy so why should you.

PO

Dear EditorIn the Spring 2013 edition of Tidings youpublished my story about how my life hadchanged the day I discovered that I hadbowel cancer. Then in the Winter edition2017, you published my story about how Ihad coped over the last five years.

On 19 December I had my last hospitalappointment at Lewisham Hospital. I was

Readers’ writesCONTINUED FROM PAGE 51, COLUMN 3



| 2 4 HOU R H E L P L I N E 0 8 0 0 3 2 8 4 2 57

told that all my final tests were OK and that I would be discharged havingcompleted my five years in remission. Thiswas my best Christmas present ever.

You read and hear a lot about the failingsof the NHS, but I cannot fault the staff atLewisham Hospital who have looked afterme over the last five years.

RegardsLen Faulkner

Dear EditorI had a colostomy two years ago, at theage of 61. When I recovered from mysurgery I started to look for high waistedtrousers. I found the suppliers on theColostomy Association list seemed tocater for the fuller figure i.e. above 34"waist, not skinny 32" like me!

I eventually found that Craghoppers Kiwioutdoor trousers were very suitable. I nowhave two summer pairs and two winterpairs (with a warm lining). However,formal trousers are still a problem.

Best wishesJohn Niven

Dear EditorDuring my first year of wearing acolostomy bag, some ten years ago, I experienced the leakages described byMP in issue 44 of Tidings. At times, I wasin despair as there was no warning as towhen the bag would lift and the tell–talearoma arise.

After much trial and error, I decided tokeep the filter cover on at all times and tointroduce air by blowing into it whenaffixing the bag. I also make sure there isa good seal immediately surrounding thestoma. Since doing that, I have neverlooked back, had no daytime leaks andjust a few at night when something I hadeaten made me loose.

Kind regardsJoyce

Dear EditorI have been hoping that somebodysomewhere will have some unused andunwanted TWO piece Coloplast

plugs (known as the Assura or Consealplug).I have the one piece plug but thetwo piece worked much better for me. Ihave the actual plugs (ref 1235) but Idon’t have the Conseal baseplates (ref1200) to go with them.

It would make my day if some Tidingsreader found some at the back of theirwardrobe! I will gladly pay for postage andmake a donation to the ColostomyAssociation on their behalf.

Kind regardsRos

Dear EditorThank you for Tidings, which I have beenreading with great interest for many years,having had my colostomy in 1998.

In the Winter 2017 issue, yourcorrespondent SP requested adviceconcerning the removal of hairs aroundthe stoma site. My own stoma site is veryhairy, and I too found it difficult to getflanges to adhere. So, I tried a number ofhair removal methods. First, I tried a hairremoval cream, and all I can say is DON’T– the pain when the cream got onto thestoma was excruciating. Next I tried carefulshaving. I found that this method workedin the short term, but when the hairs re–grew they were very stubbly, again makingflange adherence difficult. Finally, I triedindividually plucking the hairs, a few at atime, and I have found this to be the bestmethod for me. Hairs do eventuallyreappear, but I only need to go plucking acouple of times a year. After plucking, I apply an alcohol–based stoma skinlotion to avoid any soreness and toprevent skin problems. Hope this helpsyour correspondent.

Best regardsDC

Dear EditorTo follow on from SP’s letter in the lastissue, I also shave around my stoma. Hairrefuses to grow on the top of my head butgrows in profusion on the rest of my body!

I find that the BIC 1 disposable razor isideal. I can get about three to four usesfrom one then throw it away. They can bebought from Amazon in packets of 5 or 20at a good price.

RegardsDS

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:


Please make sure you include your fullname and address and telephonenumber so we can contact you.Additionally, please mention whetherthe Colostomy Association haspermission to publish your letter andwhether you would like us to use yourfull name or just your first name. In theinterests of confidentiality, if you do notgive us permission to use your name wewill 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’ writesWe want

to hear

from youu

Local Support group Events


LO C A L S U P PO R T

Solent Ostomates Support

10th Anniversary CelebrationSaturday 22 April 11am – 3pm

The event will be opened by the Mayor ofEastleigh

Manufacturers of stoma care products willbe present and refreshments will beavailable,

Come and join us at:Kings Community ChurchUpper Northam RoadHedge EndSouthampton SO30 4BB

The Solent Ostomates Support Group(S.O.S.) was founded in 2007 by ColostomyAssociation volunteer, Carole Summer. Itbegan with only six members. Today thegroup is run by a committee chaired by JayneLewis. On average thirty members attendmeetings held at Kings Community Churchat 2pm on the last Wednesday of the month(except August and December). Arepresentative from a stoma supply companyis present at most meetings and sometimesa stoma nurse. A barbeque is held in thesummer and an annual dinner in January.

For more information:Tel 07527 707 069

Does your local supportgroup have a special event in the autumn or winter of2017?

Our summer issue will go out inearly July so if you have:

● an interesting speakerattending your meeting;

● an outing you’d like localostomates to know about;

or any other special event:

send an e–mail to

[email protected]

or a letter to:



LO C A L S U P PO R T

There has not been a stoma supportgroup in Hexham for a long time but ourexcellent and very caring stoma nurse,Christine Watson, has always wanted tostart one. When she helped me with mystoma four and a half years ago, we bothdecided that it was time we put ourheads together to form a very necessarygroup in this area.

Christine suggested that I contact theColostomy Association for help and adviceon setting up and running a group. I thenattended a short course and receivedwonderful teaching, training and advicefrom Helen Bracey and Evelyn Cowell.Many, many thanks to you all.

Our first meeting was held in November2013 in the Education Department ofHexham Hospital, and since then all ourmeetings have been held there. Onaverage between 12 and 14 people

attend. We meet once a month and have a regular programme: one month we invite a representative from amanufacturing company, the next monthwe will have a speaker. A pharmacist, aphysiotherapist, a dietitian, an audiologistand many other people have given us veryinteresting talks. The following month wewill have what we call an open meetingwith, hopefully, a stoma nurse present.This three–month cycle means that we allknow in advance what we will be doing ateach meeting.

Our open meetings are very important tous, because it gives us the opportunity totalk about any personal problems that weencounter. Someone invariably has asolution to help or a suggestion to make.The group allows us the opportunity to airour worries in complete understanding andcomplete privacy.

One of our members had her stoma 23years ago. After the operation, she did notsee a doctor or a stoma nurse until shecame to one of our meetings. Anothermember has had good help and advicefrom both doctors and nurses. However,she still finds our open meetings invaluable.

A representative from ConvaTec very kindlyorganised a trip for us to visit the Amcaredistribution centre in Sunderland to seehow orders are received and dealt with, allvery interesting. Our last meeting of the yearis our Christmas dinner which is very muchenjoyed by all.

Thank you again for all the help you gaveus when we started to set up our groupthree years ago.

Judy YeomanGroup organiser

For further information:Tel: 01434 681 972.

Support Groups are places where peoplecan share personal stories, express emotions, andbe heard in an atmosphere of acceptance,understanding and encouragement.

Hexham Stoma Support Group

www.ostomycoversbylinda.co.uk

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Made by an ostomate for ostomatesTel: 01205 723 327

or email: [email protected]

– We have you covered –Shield yourself from the rain and look good atthe same time with a Colostomy Association

umbrella. Ideal for your handbag.

Manual folding polyester umbrella in purplewith white Irislogo on fourpanels.

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Don’t forget your travel

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Regular donationRegular donationRegular donation

To donate via standing order...Please fill in the form, check your details are correct, then return this page to the Colostom

y Association - thank you

Every 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.

Thanks to the Gift Aid scheme - we can reclaim money on your donation from the government. For everypound you give us, we can claim an extra 25p. For example, a donation of £15 becomes £18.75 with Gift Aid,at no extra 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

Thank you for your support

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

Regular donation: I wish to make a regular contribution by Banker’s Standing Order to theColostomy Association in support of the charity and its ongoing work. I have completed the Banker’s StandingOrder Form below (Please tick).

Instruction to your Bank/Building Society to pay by Banker’s Standing Order

To the Manager: (Bank or Building Society)

Bank Address: Postcode:

Name(s) of Account holder(s):

Account number: Sort code:

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

monthly quarterly annually starting on the 1st 15th 25th of month: year:

thereafter until further notice. (Please cancel any previous standing order in favour of this beneficiary).

*Please leave one month’s notice to ensure donation processes through banking system and

state your donation amount in words:

Please pay: NatWest Bank, Market Place, Reading, RG1 2EP

Account name: C.A. Ltd Account No: 88781909 Sort code: 60-17-21

Name: (IN CAPITALS)


�

Note:Please ensurethat we haveyour correct contact details: full name, addressand postal codetelephone number thank you

My Details: Title: Name: Surname:

Address:

Postcode:


Email:

Please fill in this form to make a Regular donation by Banker’s Standing Order. Check your details are correctthen return the completed form by post to: Colostomy Association, Enterprise House, 95 London Street,Reading, Berks RG1 4QA. Telephone: 0118 939 1537 if you have any queries.

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)


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

Thank you for your support

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

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

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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.


Thank you for your gift

�

My Details: Title: Name: Surname:

Address:

Postcode:


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.


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

S U P PO R T

Attending a stoma care Open Day is anopportunity to find out about all theostomy products and services available.It is also a chance to meet other people who have a stoma and visit theColostomy Association, IA and UrostomyAssociation stands.

Colostomy Association volunteers, who allhave stomas themselves, attend stoma careOpen Days all over the country wheneverpossible. Do come along, call at our standand have a chat.

Open Days that we are aware of at the timeof going to press are listed below. An up todate list, including events in your area, canbe viewed on the Colostomy Associationwebsite.

Royal United Hospital Open DayBath Racecourse & Conference CentreLansdown, Bath BA1 9BU25 April 2017 10am – 2.30pmStoma Therapy Secretary 01225 824 056

Countess of Chester Hospital Open DayThe Civic Hall, Ellesmere PortCheshire CH65 0AZ26 April 2017 1pm – 5.00pmStoma Care Department 01244 366 170

Stoma Care Appliance Exhibition andCoffee AfternoonRhondda Suite ConservatoryRhondda Heritage Park, Trehafod CF37 2NP28 April 2017 1.30 – 3.30pmRoyal Glamorgan Hospital Stoma Care Team01443 443 053

West Suffolk Hospital Ostomy Open DayThe Read Room at TattersallsNewmarket, Suffolk CB8 9AY11 May 2017Stoma Care Team 01284 712 697

Bristol Ostomy Self Support Group OpenDayThe Radison Blu HotelBroad Quay, Bristol BS1 4BY3 June 2017 10am – 1pmChristina Hammond 07773 869 [email protected]

Hillingdon Hospital Open DayEducation Centre, Hillingdon HospitalUxbridge, Middlesex UB8 3NN24 June 2017 9.30am – 11.30amAndrea Thomas 01895 279 391

National SupportOrganisationsSupport organisations for peoplewith stomas and other boweland bladder diversions

IA The Ileostomy and Internal PouchSupport Groupwww.iasupport.orgTelephone 0800 0184 724e–mail [email protected]

UA Urostomy Associationwww.urostomyassociation.org.ukTelephone 01889 563191e–[email protected]

Mitrofanoff Supportwww.mitrofanoffsupport.org.ukTelephone 01202 674336e–mail [email protected]

IOA International Ostomy Associationwww.ostomyinternational.org

Junior Ostomy Support Helpline (JOSH)via the Colostomy Association Helpline0800 328 4257e–mail [email protected]

Breakaway Foundationwww.breakawayfoundation.org.ukTelephone 01283 240253 e–mail [email protected]

Support Organisations forassociated medical conditions

Beating Bowel Cancer UKwww.beatingbowelcancer.orgTelephone 020 8973 0000

Bowel Cancer UKwww.bowelcanceruk.org.ukTelephone 020 7940 1760e–mail [email protected]

Macmillan Cancer Supportwww.macmillan.org.ukTelephone 0808 808 00 00 Monday–Friday, 9am–8pm

Crohn’s and Colitis UKwww.crohnsandcolitis.org.ukTelephone 0300 222 5700e–mail [email protected]

The IBS Networkwww.theibsnetwork.orgTelephone 0114 272 3253e–mail [email protected]


Stoma CareOpen Days

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Information about forthcoming OpenDays in your area may be sent to you bythe Colostomy Association. Theseinvitations are sent by our volunteers,who stick an address label on theenvelope. The company involvedprovides the stamps or pays the cost ofpostage and pays an administration costwhich helps to boost ColostomyAssociation funds. Your personal detailsare never disclosed.

Colostomy Association volunteer, Mike, manning the stand at an Open Day in Shropshire


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 558W.B.O.C (West Berkshire Ostomy Club)Jackie Dudley: 0134 442 6652

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]

You 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 2133Peterborough 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 TheSecretary: 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

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



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 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.)Carole Summer: 0752 770 7069Southern 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 2696M.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 and Nicola 01253 291919,www.phoenixgroupbvh.com or eMail:[email protected] Bowel CareJackie Carey Secretary: 0161 748 9659,Doreen: 0161 962 7818, John: 0161 748 4655

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]

ESSence (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

OxfordshireOxfordshire Ostomy FellowshipPat Longworth: 0123 552 4163

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 1204 James Pagett Ostomy Support Group(Afternoon Meeting)Vicki Blackwell on 01493 663363James Pagett Ostomy Support Group(Evening Meeting)Sandra Hutchings: 0150 258 5955West 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]

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 4262

Behind 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 HugilLeeds Bowel Cancer Support GroupLynda Castle (Colorectal NurseSpecialist) 0113 206 5535Scarborough Stoma Support GroupStoma Care Team: 01723 342 388The 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 7736147 [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 After 6pmCwmbran 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 0701The 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



CA Open Day, Sat 16 Sep 2017 – see page 1212 · catheters, sheaths, wound care and similar items,...

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