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Editorial Team

Co–Editor, Trustee,Colostomate & VolunteerSarah Squire

Co–Editor & General ManagerLibby Herbert

Trustee,Colostomate & Helpline VolunteerIan Jackson

Colostomate & VolunteerJackie Dudley

Colostomate & VolunteerRosemary Brierley

ColostomateDuncan Wells

Stoma Care Nurse AdvisorJulie Rust RGN, Dip, N MSc

Fundraising & Development ManagerGiovanni Cinque

Marketing & CommunicationsManagerClare Matthews

Writer & ResearcherRichard Biddle

Data Analyst & PublishingArvind Anand

The summer is here and it’s certainly very welcome after the terrible weather we hadearlier this year. It’s taken us until July to thaw out! Neither of us have experiencedsnow in April before but, much as it looked pretty to start with, the wonder soon woreoff as we tried to negotiate our way to work…

If you are reading this relaxing by the pool in some faraway destination, then we hopeyou are enjoying yourself. We’d like to join you, but there has been no let up at ColostomyUK – we are just as busy as ever. Our Medway Dragons Family Fun day is now just a weekor so away. We’re really looking forward to this and would love to see you on 21 July ifyou are able to make it. (to read more, see page 38). Planning is now underway for ournext open day. Just like weddings, you have to do this sort of thing years in advance now.Our work with airports is ongoing and since the last update we have attended our firstmeeting as members of the Civil Aviation Authority’s Access to Air Travel panel. We arevery pleased to be involved in this as it gives us an opportunity to positively influencepolicies and procedures on behalf of ostomates. As we have said before, if you have hadeither a bad or a good experience travelling through a UK airport then we want to hearfrom you. On a completely different subject, we have been receiving a steady stream ofqueries and comments concerning the new prescribing formularies. Please keep thesecoming, as at the moment we don’t have enough information on their impact to have anofficial Colostomy UK ‘position’.

We have some really inspiring pieces in this edition. Many of you will identify with RichardBiddle’s article on body image. As we all know, after stoma surgery this often takes quitea knock. In fact, in our opinion this aspect of the ‘journey’ hasn’t had anywhere near theattention it deserves. This is why we are so thrilled to feature Jane Bland on our front cover.You can read all about her ‘bags and all’ naked photoshoot for Good Housekeeping onpage 28. We have two real lives stories to captivate you further. Jodie Hookway talks abouther struggles with Crohn’s, the resultant surgery and being pregnant with a stoma. DonDow, who was diagnosed with bowel cancer earlier this year, explains how he got in shapein readiness for surgery and has some advice for what not to take to hospital for thepost–op recovery period. For those of you that are considering irrigation, we are confidentthat you will find Patrick Reeve’s article useful. This is something of a back–to–basics pieceas Patrick has only been irrigating a short time. As well as explaining his routine, he givesan honest rendering of the benefits, which are many given his job requires lots of travelling.Finally, as you have come to expect, there are readers’ letters, updates on our campaignsand projects (and in particular the 50K Challenge), all the latest news and, to cap it all (ifyou will excuse the pun!) an article on Coloplast’s Conseal Plug.

Libby HerbertGeneral Manager

Dear readers

Cover pictureJane Bland nude photoshoot for GoodHousekeeping – page 28.

Tidings Magazine:The views expressed by the contributors are notnecessarily those of Colostomy UK. Great care hasbeen taken to ensure accuracy, but Colostomy UKcannot accept responsibility for errors or omissions.

Disclaimer:The display, description or demonstration ofproducts and services or the inclusion ofadvertisements, inserts and samples within TidingsMagazine does not constitute an endorsement orrecommendation of these products and services byColostomy UK.

©Copyright 2018 Colostomy UK. All rights reserved.No part of this publication may be reproduced,stored in a retrieval system, or transmitted, in anyform or by any means, electronic, mechanical,photocopying, recording or otherwise, except aspermitted by the UK Copyright, Designs and PatentsAct 1988, without the prior written permission of thepublisher. All marks acknowledged.

Sarah SquireTrustee, Colostomateand Volunteer

L–R: Billy McLintock – SecuriCare, Martin Offiah – ex Wigan, London Broncos and Great BritainGraham Wells & Matt Turner – Team Colostomy UK RL, Giovanni Cinque – Colostomy UK

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SecuriCare® is a registered trademark of CliniMed (Holdings) Ltd. SecuriCare (Medical) Ltd. a company registered in England No. 1793254 SecuriCare (Medical) Ltd, Cavell House, Knaves Beech Way, Loudwater, High Wycombe, Bucks HP10 9QY. Tel: 01628 850100 Fax: 01628 810839 Email: info@securicaremedical.co.uk © SecuriCare (Medical) Ltd. 2016 PID 3394

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CON T E N T S

Cover story28 Jane Bland reveals all...

Colostomy UK news8 Bulletin Board

Real lives11 Getting fit to get fitter Don Dow19 Looking forwards not backwards Ian Condon37 Chlorine, the breakfast of champions Richard Biddle

Wellbeing13 Your rights regarding your NHS prescription and the

Electronic Prescription Service for England only15 Just how important is body image? Richard Biddle16 Care needs assessments explained Giovanni Cinque21 50K challenge22 Dear Nurse Julie Rust answers your questions30 Irrigation Sarah Squire introduces Patrick Reeve34 The Conseal plug – an option for the colostomate

Wendy Osborne38 Active ostomates Giovanni Cinque41 I was worried that I couldn’t have a family

Jodie Hookway

Fundraising44 Fundraising focus Giovanni Cinque

Support25 Readers’ Writes Your letters and e–mails48 News from Local Support groups49 Stoma care open days Open days around the country 49 National support organisations50 List of local support groups

New products27 New products and services

Contents

We are Colostomy UK. Here if youhave questions, need support or justwant to talk to someone who lives witha stoma.

Your voice on the bigger issues:advocates for your rights andcampaigning to raise awareness ofwhat matters to you; running projectsto empower you; building communitiesto support you.

How to contact us

General Enquiries0118 939 1537

24–hour free helpline (stoma carequeries only)0800 328 4257

info@ColostomyUK.org

To request (or cancel) your quarterlycopy of Tidings0118 939 1537info@ColostomyUK.org

Editorial EnquiriesLetters, articles or other submissions

Colostomy UKEnterprise House, 95 London StreetReading, Berkshire, RG1 4QA

editor@ColostomyUK.org

Advertising enquiriesFor a media pack and advertisingrates

0118 918 0500arvind.anand@ColostomyUK.org

Social media:

Join our ‘closed’ support grouptoday simply put ‘Colostomy UKsupport group’ into your FACEBOOKsearch bar, click on Group and clickon ‘Ask to join’ you will be assuredof a warm welcome!

@ColostomyUK

Donating to Colostomy UKAn annual donation of £20 (or whatever you can afford) allows us to produce Tidingsand to continue our vital work, supporting, and empowering ostomates – see page 47for donation form.

You can donate via our website www.ColostomyUK.org/donateor by calling us on 0118 939 1537

8 | T I D I N G S 5 0 | S U MM E R 2 018 W E B S I T E : WWW. CO LO S TOMYU K . O R G

CO LO S TOMY U K N EWS

World Ostomy Day is celebrated every three years and aims toraise awareness of stomas around the globe. This year it will beheld on Saturday, October 6, 2018. For Colostomy Day this yearwe will be joining and supporting World Ostomy Day. This year’stheme will be ‘Speaking Out Changes Lives’.

We are teaming up with the Ileostomy and Internal PouchSupport Group (IA) and the Urostomy Association (UA) to speakout about stomas. You’ll be able to find us on a World OstomyDay branded bus, driving around the streets of London. Ourdestination will be Speakers’ Corner in Hyde Park whereostomates will be saying their piece and ‘speaking out’.

Further details will be available on our website and social medianearer the time. If you are not online and want to find out more,then please call us in the office on: 0118 939 1537. ■

Team Colostomy UKRugby League We’re excited to announce that Colostomy UK have formed aRugby League side ‘Team Colostomy UK’ who will be makingtheir debut against the Medway Dragons Masters team as part ofa new partnership. Find out more on page 38. ■

Sainsbury’s – training staff onhidden conditions Last month we worked with Sainsbury’s to help them produce afilm to be used to educate staff on hidden conditions, accessibletoilets and inclusivity. Our volunteer, Colin Allum, was filmed layingout his stoma supplies and talked about his stoma, his experiencesof accessible toilets and the importance of a shelf, hook, bin andinclusive signage. Our Marketing and Communications Manager,Clare Matthews, then talked more about what a stoma is, ourcampaigns and the importance of recognising hidden conditions.We can’t wait to see the finished production. ■

Your voice on the bigger issuesHere at Colostomy UK we are constantly striving to ensure that the rights and needs ofostomates are represented in society. Alongside our core support services we areworking hard with airports and other business and organisations to get your voiceheard.

On these pages you will find more about our recent work with the Civil AviationAuthority to ensure airport travel is as hassle free as possible. You will also find outmore about our campaign for stoma friendly toilets. We’d love your supportcampaigning too, so if you’d be happy to speak to organisations and businesses inyour local area about how they can become stoma friendly, please contact ClareMatthews: Clare.Matthews@ColostomyUK.org. We are advocates for your rights so Ifyou have experienced difficulties when travelling through any UK airport or with toiletsand would like our help please contact us by email at: info@ColostomyUK.org or on:0118 939 1537. ■

Bulletin Board

Clare Matthews – Marketing and Communications Manager

CO LO S TOMY U K N EWS

Stoma friendly airportsYou may have read in the last issue ofTidings about our work with ManchesterAirport – ‘Have Bag, can travel’. We’repleased to say that since we have beenengaging with the airport we have seen a66% drop in the number of complaintswe have received about Manchester,compared to the same period last year.Our engagement with them continuesthrough their quarterly Accessibility Forumwhere Colostomy UK and other ‘hiddenconditions’ charities have the opportunityto share concerns with security andcustomer service staff, and input in tofuture plans.

In February we met with JamesFreemantle, The Consumer EnforcementManager at the Civil Aviation Authority(CAA). This gave us the opportunity toshare with him our airport engagementso far and also seek advice on how wecan further develop our airport strategy. Asa result of our meeting with James, Libby

Herbert has been invited to sit on the CAA Access Panel. The Access Panel meets twice ayear and advises the CAA on policy issues in the area of impairments, hidden conditionsand disabilities.

We have also been invited to join the Heathrow Accessible Transport Forum (ATF) andattended our first meeting in April. The ATF is part of the Heathrow Access AdvisoryGroup whose key objective is to bring accessibility and inclusion to the forefront ofHeathrow’s agenda. The purpose of the ATF is to provide a grass roots connection withthe people who require additional support when flying through Heathrow.

In June we met with Sara Marchant The Accessibility Manager for Gatwick Airport, todiscuss how we can work with them to improve the travel experience for people with astoma using their facilities. ■

IA national councilmeeting In April our General Manager, LibbyHerbert, attended the IA (Ileostomy andInternal Pouch Support Group) NationalCouncil Meeting in Ashford. Libby wasdelighted to be invited to attend andreceived a very warm welcome. The eventgave Libby a chance to meet with lots ofkey people in the stoma industry and toforge stronger links with our tri–charitypartners at the IA and UA. ■

Dementia and a stoma Following on from the launch of our Caring for a person with a stoma

and dementia booklet, we’re proud to say that Colostomy UK is now aregistered Dementia Friends organisation. All staff, trustees, andvolunteers will also be given the opportunity to attend Dementia FriendsInformation sessions, which will teach them about what it is like to livewith dementia and some of the small actions they can take to help thoseliving with dementia in their communities.

In March we were invited to Join the inaugural Windsor, Ascot andMaidenhead Dementia Action Alliance alongside organisations including CareUK, Age Concern, The Alzheimer’s Society, The Royal Borough of Windsor andMaidenhead, The Royal Collection, Metro Bank, and Waitrose. Its aim is topromote a dementia–friendly community within the Royal Borough of Windsorand Maidenhead. ■

Can you help?Colostomy UK and Wexham Park Hospitalare looking for potential volunteers to helpwith the launch of a new support groupfor ostomates. If you live in Ascot,Bracknell, Maidenhead, Slough, Windsoror South Buckinghamshire and areinterested in helping out please callGiovanni Cinque on: 0118 939 1537 or email:Giovanni.Cinque@ColostomyUK.org

Freephone helpline:0800 328 4257

Caring for a person witha stoma and dementiawww.ColostomyUK.org

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R E A L L I V E S

In this articleDon (73) tells usall about how he

lost weight and gotas healthy as

possible before hisstoma surgery.

It all started in late December 2017 whenI discovered some blood in the toilet. Idecided to make a GP appointment tocheck this out and at the same time seehim about my enlarged prostate whichwas causing regular night time toiletvisits. Initially, I was diagnosed with aninfection and prescribed a course ofantibiotics. But, with the Christmasperiod over and my antibioticscompleted, blood was still appearing inthe toilet bowl, so I returned to theDoctor for more advice.

The Doctor arranged for two sets of bloods:the first for the rectum investigation; thesecond to check problems with myenlarged prostate (thankfully the testshowed it was benign). I was also referredto the Endoscopy Department for aninternal investigation. At the end of this Iwas given the bad news: bowel cancer. Italso revealed that I had a large Polypgrowing in a position the consultant couldnot get to. I was advised that surgery for thecancer was necessary and told by theconsultant that I needed to lose weight andget as fit as possible prior to this. I was alsoasked to return for a second colonoscopyinvestigation, during which the 30 cm longpolyp was removed.

At the meeting with the consulting surgeon,the risks of the proposed surgery wereexplained together with the options. Hehoped to cut out the bowel cancer whichwas very low down in the pelvis area and,after removing the tumour, join the colonends together. But the risk of infection wasgreat. The other alternative, if the first

proved impossible, was to remove thetumour and connect my colon direct to astoma with a permanent colostomy bag.

I now moved into the first stages of thepre–op assessments and awaited myoperation date. Over the next five weeks Iset myself a target to lose some weight andget fit. I cut out all fatty foods and ate ashealthily as possible. I had given up alcoholthe previous December which helped withthe weight loss and my pocket! I made agood start to each day with rolled oatsporridge (made with water) and toppedwith pulsed pears, grapes and two largespoons of zero fat Greek yogurt. I alsowalked briskly every day and over theperiod walked more than 80.5 Km. Theresult was I lost a stone in weight.

I had my surgery on 14 March this year. Dueto complications the surgeon had to carryout the full operation (called an Hartmann’sProcedure). This resulted in a permanentcolostomy. I also ended up with aninfection after the operation, which tooktime to heal. My post–op recovery time inhospital was quickened by the nurses,doctors and surgeons, all of whom weresimply fantastic. Initially my bowels stoppedfunctioning and so the surgeon encouragedme to get up and exercise. I did this bywalking the ward corridors and within a fewdays my system started working again.

I thought I had prepared well for myhospital stay, packing a drawing pad andpencils and a couple of books to read. I alsohad e–books on my phone. The reality wasnone of it was used and my wife eventuallytook the whole lot home. Although my wife

or daughter brought me in a dailynewspaper, most of the time I just scannedthe headlines as I couldn’t concentrate onthe small text. The most useful item was mypocket dab radio with ear phones. I listenedto this during day and at night, with an eyemask to reduce the hospital lights. I alsoenjoyed brief chats with fellow patients.

After nine days in hospital I came home buthad ongoing rectum drain problems due tothe infection. I also had an infection in oneof my surgical wounds and so was put onantibiotics. This meant that to begin with Ihad to go back to hospital each day for newdressings. I have now learnt that the rectumdrain problems can be ongoing due to thenatural build up of mucus. I am verygrateful for all the information I receivedfrom Colostomy UK; amongst other things,I found their booklet on rectal dischargevery useful.

My enlarged prostate is the next problem totackle. This still has me up at night, sittingin the kitchen with a cup of peppermint tea,hoping that it will help me to pass water. Iam hoping that this can be resolved withtablets, although those prescribed so fardon’t agree with me.

With my operation over, I look forward to agreat future. I am hoping to get back to myart hobby. Just before my surgery I sketchedand prepared portraits of my threegrandsons. I plan to complete these inacrylic paints and hope to achieve a goodlikeness!

Don Dow10 April 2018

Don Dow

Gettingfit togetfitter

With a family of four, and soon to be six, pregnant

37-year-old Stephanie Cowie was using two types of bag.

One because she liked the aesthetics, the other to soothe

her sore skin after using the former. She couldn’t find the

perfect bag that did everything…until now.

Working mum, Steph, was diagnosed with ulcerative colitis

during her second pregnancy. After deciding she needed to

be well again for her growing family, she made the brave

decision to have a stoma formed. Steph likes to research and

test bags and isn’t afraid of trying out new things.

She said: “After trying lots, I settled down with two brands

and alternated between them. I liked one product due to its

aesthetics, but it affected my skin badly. I liked the other,

the Salts Confidence® Natural Advance because it soothed

my sore skin. It wasn’t ideal having to swap between two

different bags but at least I had found a temporary solution.”

Steph then noticed the new Salts Confidence® Be range via

social media. “I remember saying – three colours, no way…

is that a hoax? I thought it looked like an item of clothing,

it certainly didn’t look like a medical device.”

Having a choice of colours is a real first for people living with

a stoma. Confidence® Be comes in black, white and stone,

so Steph can match it with underwear, swimwear or clothes

and have the confidence to wear what she wants.

Steph really wanted a comfortable bag that fitted well on her

tummy which had really changed shape! “I love Confidence®

Be. I immediately felt the difference. It’s lighter in weight,

it doesn’t pull on your skin and I love the different colours.

I was really interested in the ‘anti-sag’ feature given the shape

I am at the moment. It is everything I want a bag to be. It’s a

game-changer, a life-changer.”

Salts Confidence® Be has also been designed to look great,

no matter how long it’s worn. The new and improved fabric

stays sleek, without bobbling or fraying over time. While smart,

anti-sag stitching helps the bag keep its shape and prevents

drag, even when full. Giving everyone the confidence to enjoy

the most important things in life.

“Confidence® Be is going to help me do that. Whether I wear

white or black, I will feel good and positive. I know it will work,

it won’t hurt my skin, it is easier to use. It doesn’t sag, it looks

great, what’s more to say. I used to use two different bags,

now I only have to wear one. I have found the perfect solution.”

My Confidence® Be Story: Stephanie Cowie

FINDING MY PERFECT BAG WHILE PREGNANT WITH TWINS

Confidence® Be closed

bags are available in

black, white and stone

so you can choose

the colour of your bag

to match your mood,

outfit or underwear.

CONFIDENCE® BE For all you want to be

Try Confidence® Be for yourself.

You can order samples today on freephone: 0800 028 2144

(England & Wales), 0800 626388 (Scotland). Alternatively,

you can email: samples@salts.co.uk or visit www.salts.co.uk

@SaltsHealthcare

SaltsHealthcare

ADVERT

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WE L L B E I N G

This article was written and approved by thePatient, Industry and Professionals forum(PIPs) who are committed to improvingproducts and standards of service.

NHS prescriptionsThe NHS do not allow prescriber’s to directa prescription to a particular dispensingcontractor ie a Dispensing ApplianceContractor (DAC) or a Pharmacy.Remember, a prescription belongs to you,not the GP, you decide who will dispense it;no one can tell you who to take it to. If youfeel you have had your prescription directedto a particular contractor you should contactyour usual dispenser, your specialist nurseor your patient association (Colostomy UK,IA and UA)

Electronic PrescriptionService for England onlyYou may now be becoming more aware ofEPS as GPs start to issue prescriptionselectronically. Uptake is now very high with92.4% of GPs now sending electronicprescriptions. In fact 61% of all prescriptionsissued in 2017 were sent electronically.

Using EPS has a number of advantages forboth you as a patient, for prescribers anddispensers:

v Transmission of the prescription isvery quick, almost instant, it iscertainly quicker than your GPposting your paper prescription.

v It’s easier for the GP as electronicprescriptions can be signedelectronically.

v It’s easier for your dispenser as it isquicker to process and submit to theNHS.

v It’s safer as your prescription is lesslikely to get lost.

v It’s more efficient and less wasteful,there are not millions of paperprescriptions being printed and thenbundled up and sent to the NHS forpayment.

v It’s more accurate – as there are lesspeople typing and inputtinginformation, fewer mistakes aremade.

How does EPS work?You chose who dispenses your prescription,

Your rights regarding your NHS prescription and theElectronic Prescription Service (EPS) for England only

this is called ‘nomination’. You can chooseup the three dispensers:

v You can nominate a pharmacy foryour medicines and if you wish theycan also dispense your appliances.

v You can also nominate a DispensingAppliance Contractor (DAC) for justyour appliance prescriptions to go to.This will be your prescription forstoma bags, catheters, sheaths,wound care and similar items.

v If you live in a rural area you can alsonominate your Dispensing Doctor’ssurgery.

Remember, with both paper and electronicprescriptions, the prescription belongs toyou and you can take it to, or nominate anydispenser, anywhere in the country. Aprescriber or any other health careprofessional cannot tell you where youmust take or send it.

How do you make a nomination?You can nominate your dispenser at your GPsurgery, at a Pharmacy or ask your DAC todo it. They may want you to sign a consentform as a record of your request so that theyhave proof of your choice. They will thenupdate the EPS system and whenever yourGP writes a prescription for you, it is sentautomatically to the dispenser/s you havechosen. It is very simple.

You can change your nomination at anytime and this will change where anyprescriptions are sent. As of March 2018over 45% of the population of Englandhave sent up a nominated dispenser.

EPS works well with repeat prescriptions. Ifyou have the same appliances month aftermonth, rather than contacting the GP everytime, they can upload 6 or 12 prescriptionsinto the system. As each one is used, the nextone is made available automatically. Thedispenser MUST contact you each time theyuse a prescription to make sure you need theitems and your condition hasn’t changed – asensible measure to prevent waste and overusage – but this really is no different to bestpractice with paper prescriptions.

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 Scotlandand Wales?Scotland and Wales have their own NHSand they decided that they would introduceelectronic prescriptions differently. They stillissue paper prescriptions that are barcoded, much as EPS Release 1 in England.

At present, in Scotland and Wales, appliancescan’t have any form of electronic prescriptionand DACs or Approved Stoma Suppliers (inScotland) are not enabled to use EPS. ■

Your prescriptionis yours and youdecide where itgets dispensedYou can decide how to get yourprescription supplies dispensed.

You can obtain prescription supplies infive different ways:

i. You can let the supply company(sometimes called DACs) handleeverything – you place an orderwith them and they will contactyour GP to get the prescription.

ii. You can place an order with asupply company and then sendthem your prescription yourself.

iii. Your GP can handle everything –you can ask your GP to send theprescription to your supplycompany of choice. Some GPpractices also have a dispensingarm that may be able to provideyour appliance.

iv. You can order on the NHSElectronic Prescription Service(EPS) via your GP or nurse. Youwill need to nominate your supplycompany and prescriptions will besent there electronically, reducingdelivery time.

v. You can take your prescription toa local pharmacy.

Unfortunately it varies and some GPsdon’t deal with a DAC or send theprescription, however it is alwaysworth asking the question

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Ever walked past a mirror and copped asneaky glance...just to make sure youlook ‘ok’? I certainly have and usuallyregret doing so. I always seem to have awhite and spiteful look about me. Thecombination of office work and limitedsunlight makes it difficult to achieve thattanned look deemed so appealing. Butwhy do we do the mirror thing? I’m surethe media has something to do with it.Everywhere we are confronted by images ofbeautiful people. There’s always somethingto aspire to, whether it be an ideal weight,body shape, complexion or ‘look’.

The fashion industry is now worth anestimated £28 billion to the Britisheconomy. Cosmetic surgery, once thepreserve of Hollywood film stars is nowcommonplace. So too, is body piercing. Tenyears ago a study in the British MedicalJournal reported that one in 10 people (andnearly half of all young women) had a bodypiercing other than an earlobe. A measureof just how popular this sort of body‘enhancement’ has become is the burden ithas placed on the NHS – sorting outbotched jobs. Tattoos are also, once again,in vogue. According to an article by TessaDunlop in History Today, the number oftattoo parlours in Britain increased by over500% between 2000 and 2012. Then thereare all the gyms and spas…society, itseems, is obsessed. And, far from being amodern, media–driven phenomenon, Iwould argue that this has always been thecase. The British Museum’s recentexhibition of artifacts from ancient Pompeiiand Herculaneum revealed an enduring

fascination with how we look. Like it not,how you feel about your body and the wayyou look, is important. It has implicationsfor how you behave, your chances ofgetting a job, your chances of finding apartner, mental well–being, the list isendless.

So what happens when you become ill, soseriously ill that part of your treatmentinvolves body–changing surgery? This is thecase with people (ostomates) who haveundergone stoma surgery. Used in thetreatment of diseases such as bowel cancer,it involves making an opening in theabdomen (known as a stoma) throughwhich bodily waste is diverted and thencollected in a bag. Although to others thecondition may be ‘invisible’, the impact onthe person concerned can be devastating.Perceptions of being unattractive canrapidly lead to social isolation and have afrightening effect on intimate relationshipsand sexual function. In Colostomy UK’s lifestyle survey (2016) almost two thirds ofrespondents said they felt that their bodyimage was worse following surgery. Evenmore concerning, was the handful ofpeople who admitted to having felt suicidal.These findings resonate with a studypublished in the British Journal of Nursingin 2015. This suggested that after stomasurgery many people go through thegrieving process of loss, denial and anger,as they mourn the ‘death’ of their old self.

Studies show that good pre–op preparationfollowed afterwards by ongoingprofessional and lay support (such as thatoffered by patient associations and

charities), along with access to qualityinformation play a vital role helpingostomates come to terms with their alteredbody image. But, from my own involvementin supporting patients post–op, I know thatsmall things can make a huge differencetoo. One example of this is knickers and, Ishould add, knickers on prescription. I don’tmean ‘national health’ knickers either, likethe old ‘national health’ glasses, butknickers which, as well as performing amedical function, make the wearer feel justa little bit better about themselves.

When I say this, people quite often raisetheir eyebrows. Silently, they’re thinking:“Whatever next?”. If this is you, then have aread of a recent blog by Rachel Jury calledBody Confidence With a Stoma. In what canonly be described as a piece from the heart,the author talks candidly about the effectstoma surgery has had on her life. It’spowerful stuff. It also includes testimonyfrom other ostomates. The one that sticksmost in my mind is from a lady who, as aresult of developing a parastomal herniaafter surgery, now has to wear maternityclothing. This is something she struggleswith because, amongst other things, itconstantly reminds her that she can nolonger have children. If you were this lady’sGP and she came to you in the hope ofgetting a prescription for some supportunderwear, and had the audacity to expectsomething a little pretty into the bargain,would you deny her?

This article was first published onhuffingtonpost.co.uk on 28 March 2018. ■

Just howimportantis bodyimage?

Richard Biddle – Writer and Researcher

WE L L B E I N G

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Recently we have had a number of callsto our helpline from ostomates seekingadvice as they are struggling to managetheir care needs in their own home.

If you need help with everyday tasks, thenyour local authority has a legal duty to carryout an assessment to find out what helpyou need and then signpost you to whereyou can get this help whether it be from thelocal authority or an external agency. InNorthern Ireland, the Health and SocialCare Trust carries out the assessment.

Many people are put off by the idea of anassessment, but it’s not something youshould worry about. A social careassessment is not a test you can pass or fail.Instead, it’s a straightforward way ofworking out your individual care andsupport needs, so that your local authorityor NHS trust can decide the best way tohelp you.

The 2014 Care Act sets out the process theassessment must follow and the minimumthreshold of need that the local authorityshould support.

It allows you to take the lead in explainingwhat care and support you need to makelife easier for you.

The Care Act states that your wellbeing andyour wishes must be considered in theassessment process.

For example, you might want to stay in yourhome, and this must be taken intoconsideration. Or, if in the past your careneeds have prevented you from joining inactivities outside the home, but this issomething that you want to do, this mustbe considered as part of the assessmentand care plan process.

Am I eligible for a careneeds assessment?You’re entitled to have a care needsassessment no matter how much incomeor savings you have, and it doesn’t matterhow complex or simple your needs are.

If you care for someone, you’re also entitledto a carer’s assessment.

How do I get a careneeds assessment?Contact the adult social servicesdepartment of your local council and ask forone. Explain you need some help at home

and ask for a care needs assessment (alsoknown as a social care assessment). If youdon’t know who your local council is, thenthis link will help you: https://www.gov.uk/find-local-council

Urgent assessmentsIf they believe that you need supporturgently then, in some cases, a localauthority can begin providing servicesbefore a care needs assessment has beencarried out. A full assessment will take placeas soon as possible to make sure the rightsupport is in place.

What happens at thecare needs assessment?A care specialist will carry out theassessment on behalf of the local authorityor NHS trust.

You will be assessed either by a socialworker (often called a care manager) or anoccupational therapist (OT), depending onyou level of needs. The person whoassesses you should look at the followingthings in their assessment:

Giovanni Cinque – Fundraising and Development Manager

Care needsassessments explained

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v The emotional and social side of yourlife.

v Your skills and abilities.

v Your views, religious and culturalbackground and support network.

v Any physical difficulties you mayexperience or any risks.

v Any health or housing requirements.

v Your needs and wishes.

v What you would like to happen.

v If you have a carer what their needsand opinions are.

Under the Care Act, the local authority mustact to maximise your wellbeing and seek toprevent, reduce and delay any future needs.The assessor will also contact any otherhealth and social care professionals whoneed to be involved in your assessment andcare. They need to establish how many careoutcomes you are unable to achieve inorder to work out whether you are eligiblefor support. The Care Act 2014 imposed ageneral duty on local authorities to fullyconsider a person’s wellbeing whenassessing and providing care and supportservices.

It’s a good idea to take a friend or familymember with you to the assessment so thatthey can help you to explain how yourcondition affects you. If there isn’t anyonewho could go with you and you would findit very difficult to understand theassessment or to explain your needs, thelocal authority must arrange for anindependent advocate to help you at theassessment.

What happens after thecare needs assessment?After the assessment, your local authority orNHS trust will decide what care services itcan provide or arrange for you, or that youcan organise yourself through a directpayment from the local authority. Thisdecision is made by comparing your careneeds with a set of nationally agreed criteriawhich all local authorities must use. Theassessor must also take into account howthese needs affect your general wellbeingwhen they decide if you need support.

You can find out about the eligibility criteriaon your local authority’s website.

Agreeing a localauthority care packageDetailed information about the care servicesyou need will be included in your care plan,which you will get a written copy of.

Care services can include:

v Residential care or nursing homes.

v Disability equipment and adaptations

to your home – such as grab rails,stair lifts or ramps.

v Home care help with things likecleaning, meals and shopping.

v Day care for your child if either you,or they, have a disability.

v Day centres to give you, or the personwho cares for you, a break.

v A ‘careline’ phone system so that youcan call for help in an emergency.

Reviewing your careand support planOnce your care and support plan has beenagreed, you have a right to ask for a reviewat any time if you think your care needs oryour financial situation has changed.

Even if nothing has changed, the localauthority must review it regularly, usuallyonce a year.

What if you moveoutside your local area?If you move outside your local area, bothlocal authorities must work together tomake sure that you will still receive thesupport you need in your new home.

It is up to you to let the new local authorityknow that you’re moving into their area sothey can get a copy of your needsassessment and care and support plan.

If you have a carer the local authority in thenew area must support them too, if they arecoming with you.

If you don’t qualify forlocal authority supportwith careIf your local authority thinks that you don’tqualify for support because your care needsaren’t great enough, they must still give youinformation and advice about where elseyou can get help – for example, throughcharities or other local organisations. Thisinformation must be tailored to your needs.

If you don’t agree with the outcome of thecare needs assessment, your first step is toask your local authority for a full writtenexplanation of their assessment and howthey came to their decision. If you’re stillunhappy after reading their explanation,contact your local authority and explain whyyou think their decision is unfair.

Every social services department has acomplaints procedure, and must tell youhow to use it.

Paying for care – thefinancial assessment ormeans testOnce your local authority or trust hasworked out what care services you need,they’ll carry out a financial assessment. Thisis called a ‘means test’. This will work out ifyou need to contribute towards the cost ofyour care, and whether the local authoritywill pay for all or some of your care costs.

If you need care to stay in your ownhome the means test won’t include thevalue of your property. If you need to movepermanently into a care home, the test willusually include the value of yourproperty. Certain types of income, such asmoney from certain disability benefits andpensions, may not be counted in the meanstest. All other income can be taken intoaccount. In some cases, the local authoritymay also assume that your capitalgenerates an income, which will also betaken into account. If you and someoneelse jointly hold capital, such as a savingsaccount, it will be treated as divided equallybetween the two of you.

It’s also very important to ensure that youget all of your benefits and entitlements.This is because the means test will assumethat you are receiving all the benefits youare entitled to, even if you aren’t alreadyclaiming them.

Your local authority will only pay forcommunity care services and can’t providenursing care.

What to do if you’reunhappy about theresults of yourassessmentIf you or someone you are looking after ifyou’re a carer wants to complain about adecision made by social services, you canuse the statutory complaints system. If youwant to complain about your localauthority, you should do so in writing orverbally to the complaints manager within12 months. They should acknowledge yourcomplaint within three working days. Theywill also inform you of how long yourcomplaint is likely to take to investigate. Thelocal authority must respond fully within sixmonths, unless a different time period hasbeen discussed and agreed with you.

If you are not satisfied with the response youreceive from your local authority, you areentitled to ask the independent LocalGovernment Ombudsman (LGO) toinvestigate. The Ombudsman can investigatecomplaints about local councils. Furtherinformation is available by calling 0300 0610614 or online at www.lgo.org.uk ■

Flushable

Manufactured by Welland®, a CliniMed® Group company

*WRC independent testing 2017. Data on fi le.Welland products are distributed in the UK by CliniMed Ltd. Tel: 01628 850100 Fax: 01628 527312 Email: enquiries@clinimed.co.uk or visit www.clinimed.co.uk. CliniMed Ltd, a company registered in England number 01646927. Registered office: Cavell House, Knaves Beech Way, Loudwater, High Wycombe, Bucks HP10 9QY. Welland®, CliniMed® and Aura® are trademarks of CliniMed Holdings Ltd. © 2018 CliniMed Ltd. PID 5716

The latest technology in the Aura Flushable pouches gives more choice than ever before about how to dispose of a used colostomy pouch. The inner liner and fl ange are proven not to block domestic pumping stations* and can be fl ushed together. However, if you prefer, remove the fl ange and simply fl ush the inner liner along with the waste away. As well as reliable and fl exible disposal, Aura Flushable offers the comfort of medical grade Manuka honey which may help promote healthy skin around the stoma.

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I am running the Gateshead 10K in

July. As well as helping to raise

awareness and remove the stigma

of having an ostomy I know that

Colostomy UK will be able to use

the funds I raise to continue

offering help and support to

ostomates across the UK.I use the hashtag #lookingforwardsnotbackwards on everythingI do, as this is a reminder to me of how far I have come since mydiagnosis. It keeps me focused on moving forwards and when youread my story I hope you’ll see why.

In April 2015, I was suffering from bad abdominal cramps, I felt sickand I was getting uncontrollable rigors. I could not get anappointment with my GP and was advised that as I was in pain Ishould go to my local A&E Department.

Initially, I thought I had a tummy bug, but what happened nextchanged my life forever. I went to A&E and I was seen almoststraight away (I know…I as was surprised as you are!). I wentthrough my symptoms and had bloods taken. My blood pressurewas found to be through the roof. The results came back showingan infection in my blood and, as I was in so much pain, they gaveme morphine and I was admitted. Later that evening I was visitedby a surgeon and his consultant. They arranged for me to have anMRI scan where I was injected with some dye. When I got back tothe ward the surgeon was already waiting for me. He advised methat I needed an operation immediately as I had a perforated bowel.Next thing I knew I was being wheeled down to theatre, into theanaesthetic room and then sent off to the land of Morpheus.

The next thing I remember was somebody saying: “Ian, Ian, Ian canyou open your eyes for me?”. I was being woken up by a nurse.The room was pitch black with some lights dotted about. I was inintensive care and it was two days after my operation. I lookeddown and I could see that my laparotomy scar was covered. ThenI looked slightly to my right and saw what I can only describe assomething looking like a bright red ‘wine gum’. It was my stoma.At that point I got scared as everything had happened so quicklysince being admitted and now it was real.

I was eventually moved to a ward. I was bombarded withinformation about stomas and colostomies. I had tubes and drainsin virtually every orifice and I was linked to a machine giving meconstant pain relief. Just as I was starting to settle down myconsultant came to see me, then came the news…I had bowelcancer! They had had to remove a large part of my intestine, leavingme with a permanent ileostomy. In addition, I was told that I wouldhave to have radiotherapy.

It took me a long time to come to terms with my diagnosis andused to my new toilet habits. I became very depressed, especiallyduring the radiotherapy. My stoma, named ‘Thera’ (after the Greekvolcano) had a mind of its own. I had leakages often and neededto change my appliance a lot.

I am glad to say that I now feel a lot more confident and better inmyself, although I am still self–conscious of leaking and ballooning.I am also surprised at how others feel about me having an ostomy.Believe me when I say true friends and family stick with youthrough everything. My parents and siblings live nearly 200 milesaway and I have received no support from them at all and they’vestopped all contact with me. Their loss not mine! On the other handI have some truly amazing friends who have supported me throughmy journey and I am constantly making new friends throughColostomy UK.If you would like to sponsor Ian visit his Just Giving page at:https://www.justgiving.com/fundraising/ian-condon.

Ian Condon

Lookingforwards

R E A L L I V E S

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Brian’s storyI had my colostomy formed in December 2005 as a result of cancer.Surgery was followed by chemotherapy. I spent 2007 recoveringand then purchased my first bike the year after. In 2012 I cycled toHeidelberg and every year since I’ve taken the bike to Europe. As Iwrite these words, I am halfway on a ride to Munich. This startedin Belton (Rutland). My first stop was in Hull where I picked up theferry to Zeebrugge. Since then I have ridden through Belgium,Holland and Germany, seeing the Rhine and the Danube andexperiencing all sorts of weather! By the time Tidings hits people’sdoormats I will be at the Polish border and will have completedmore than 50K km since I got in the saddle back in 2008.

It has been three months since we launchedthe 50K challenge and the response has beenphenomenal. Hundreds of you have signed upto take part and are walking, cycling andrunning across the country. You are all doingyour bit to raise awareness too and fight thestoma stigma. Thank you to everyone takingpart and to those of you raising funds for usat the same time. At the time of going to pressyou have completed 15,000km towards our50,000km target and raised over £6,000. Ifyou have not yet signed up, perhaps thefollowing stories will inspire you? Thechallenge runs to the end of October, so thereis still time. To find out more visit or websiteor call us on 0118 939 1537.

Laura’s story Laura (above) I was diagnosed with stage 4 bladder cancer inSeptember 2017, with first symptoms only in August 2017. I had atotal pelvic exenteration on 1 November 2017 which was a12–hour operation to remove my bladder, part of my bowel andall my other female reproductive and pelvic organs. This resultedin me having a permanent colostomy and urostomy created.Before this I knew nothing about what a stoma was. ColostomyUK has helped me lots with awareness and the practicalities ofliving with two stomas. I am taking part in their 50K challenge tocontinue my improvement of my fitness level and to raiseawareness.

Julia’s storyMy personal best time for running 5K (in recentyears!) is 31 minutes and 40 seconds. I equalledthis time three days before I had major surgeryfor bowel cancer on 30 January 2018. The surgeryresulted in a permanent colostomy andsubsequently I started six months ofchemotherapy treatment on 19 March.

My aim is to gradually and gently get back to running and beat my5K personal best by the end of October this year, whilst raisingmoney for Colostomy UK. Training will have to be slow and gentleto begin with and training opportunities will be limited due to mychemo treatment regime, however any money I raise forColostomy UK I’m sure will spur me on to achieve my goal. In thepast few months I have received wonderful support andinformation from Colostomy UK, helping me get accustomed tomy new life with a stoma, so I want to use this opportunity to givea little back.

I will also be logging all training kms towards Colostomy UK’s 50Kchallenge.

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Q: I had my colostomy in 2012 due todiverticulitis and a perforated gut. It wastreated with antibiotics but I gotperitonitis so I was given an emergencycolostomy. I have irrigated for the lastfive years very successfully, but overChristmas I had the very bad cough thatwas going around everywhere and I gota chest infection, which was treatedwith antibiotics. The cough made myhernia a lot worse, and also I got verybad backache. I have not had troublewith my back before, however I nowhave really bad backache and myhernia is painful which it wasn’t before.

The doctor has put me on maximumpainkillers – codeine and paracetamoland I also have a patch. This is notdealing with the pain sufficiently andI’m going to see my doctor on Mondayto enquire about having a steroidinjection. I have seen the doctor fivetimes to try and get everything sorted

out and had an x–ray for my back. Ihave phoned the stoma nurse and seenher for help.

My problem is I can’t balance thelaxatives with codeine I am taking andI’m either passing rocks which is verypainful or I pancake and have tochange my bag many times a day. Thishas never been a problem before. Ihaven’t been able to irrigate sinceChristmas because the hernia nowseems to be stopping the water goingin. Also my energy levels have droppedconsiderably which I think is because ofthe pain. I have tried using Laxido,Fybogel, Senna and Lactulose, howeverI can’t seem to get the rightcombination to deal with causecorrectly, which is the high codeineintake, I need to control the pain. Whichit isn’t doing very well. I have beenadvised to take the Fybrogel in themorning and the Lactulose in the

evening. I can’t seem to get the timingright as if I’ve got diarrhoea I amreluctant to keep taking the laxativesbut I don’t know how long the cycle is.How long does it take for it to go fromvery painfully hard to normal?

I do hope you’ve got some informationthat will help me. PS I am 86.

GR

A: Balancing pain relief and laxatives tokeep the bowel functioning in asatisfactory manner is often difficult.Obviously you need to take the painrelief to ensure your pain is wellcontrolled. To try to maintain a goodbowel action you need to ensure youare drinking plenty of fluids, about 2litres per day is ideal as well as ensuringyou are eating healthily including fruitand vegetables. With regards to thelaxatives it is difficult to advise aseveryone is different. Maybe start with

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

Stoma/ColorectalRoyal Stoke University Hospital

University Hospitals ofNorth Midlands NHS Trust

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

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

DearNurse

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taking a Fybogel every morning andevery evening to try to soften but formyour output. If after a few days this isnot helping to regulate your bowelaction you can try to add in otherlaxatives such as Lactulose, Senna,Movicol but do this gradually so thatyou can see what works. If possible itmight be useful to have regulartelephone calls to your stoma carenurse so that they can help to monitorand advise with regards to the laxativesto try to manage this problem. Once youhave identified the system that worksfor you, you can then just contact thestoma care team intermittently if furtherproblems occur. I hope this helps andthat you get your pain under control aswell as ensuring the bowel functionswell.

Q: I wrote to you about a year ago whenmy wife was finding it hard to positiona bag due to a prolapse. Since then shehas developed psoriasis around thestoma area. A steroid cream wasprescribed but it is preventing the stomapouch adhering, even after allowing thecream to dry and applying powder tothe area. Could you offer adviceregarding this problem?

RFA

A: Treating a skin condition such aspsoriasis is often done by adermatologist and it is useful if this canbe done in conjunction with the stomacare team as cream based treatmentsoften do prevent the pouch fromadhering. There are other gel basedtreatments that can be used which thepouches will often adhere to better. Iwould suggest a review with the doctorwho is treating your psoriasis and ask ifthe stoma care nurse can be availablefor the appointment so that a jointreview of the skin problem can beundertaken. This will hopefully enable atreatment plan to be devised which notonly improves the psoriasis but alsomanages the stoma appropriately.

Q: I found your article very helpful. I am 94years old and have had a colostomy(loop) since June. In December I had aprolapse which alarmed me as I knew

nothing about this happening!Eventually I went to hospital where thesurgeon pushed it back! This week asmall appearance of ‘something’ whichI pressed and so far all is well but is italright to try and push it back? Any helpgratefully received.

YS

A: A stoma prolapse is when the bowelprotrudes further than is usual. As longas the bowel remains healthy and isacting the prolapse can often bemanaged without the need for surgery.I would advise a review by your stomacare nurse to check that the prolapse isnot likely to cause a problem withpouch adhesion or the stoma itself. Thetemplate needs to be checked so that itfits correctly around the stoma withoutcausing any traumatic damage to thebowel tissue and does not leak whichcan cause skin problems. Even if astomal prolapse is able to be pushedback it will often reoccur and often asupport belt may help with this, againyour stoma care nurse can advise.

Q: I have had a colostomy for over 10years due to a lack of blood whichfollowed emergency surgery for aruptured abdominal aortic aneurysm(Triple A). I am very aware of the effortsmade to save my life and can onlythank the fantastic surgeon andmedical team who worked tirelessly onme for many hours. For a few yearsafterwards I attended a stoma clinicwhich I found very helpful. However, Ihave only seen a stoma nurse on anirregular basis for some years and I amsure this is due to the volume of workthey have. My stoma has never settleddown and the output is very erratic andit is difficult to make plans for days outand holidays. I watch what food I eatand have tried to establish if this isnormal and if I can do anything to helpand make my life easier! I am now 77years of age and prior to the Triple Awas in reasonable health (apart fromDiabetes type 2, Glaucoma, HeartAttack 1981 ) and I am still active butsomewhat slowing down. My questionis:– should I see a Stoma Nurse on aregular basis i.e. once a year, twice a

year or not at all? I am also aware thatthe medication that I take can have aneffect on my condition.

Name withheld

A: Different stoma care teams havediffering follow up protocols. Within myown team we see patients regularlyimmediately following surgery untilapproximately 3 months after stomaformation. After this patients are advisedto telephone us for advice and, ifneeded to be seen in clinic, we ask fora GP referral. We also do annualtelephone calls to our patients so thatwe can identify any issues and again seethem in clinic if necessary. If you arehaving problems I would certainlyadvise a review by your stoma careteam, they will not know you are havingproblems unless you contact them. Youcan also ask them what their usualfollow up protocol is so that you canensure you are being contacted or seenas needed. ■

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

E–mail:editor@ColostomyUK.org

or write to:The EditorColostomy UKEnterprise House95 London StreetReadingBerkshireRG1 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.

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Dear EditorDue to problems in childbirth and havingsome further surgery, I began experiencingbowel difficulties. Later I had surgery torepair my sphincter in 1999. This wasfollowed by having a temporary colostomyformed. Unluckily I got a hernia round thisarea. Later in 2002 I became unwell withlots of problems, I went into St MarksHospital for further surgery for an endcolostomy, with the temporary one repairedand closed. This was my first visit to StMarks and as the years have gone by I havereturned for other procedures.

At the present time I am having trouble withmy stoma going concave. As well asdiscomfort and pain my stoma alsosometimes stops working a little. I feel veryworried and apprehensive. I am gettingmedical advice and support fromColostomy UK and my GP which Iappreciate and I may require a furtherhospital visit. If possible would you be ableto do an article on concave stomas so itwill hopefully give more of an insight intothis problem for myself and anyone elsewho has these concave issues. LDS

Dear EditorI attach notes on how I cope withballooning. I am sure you must have comeacross others who have found similarsolutions to the problem but I have never

Retracted stomas can be a problem tomanage and we did write about them,along with prolapsed stomas in 2015.We would be very happy to send theprevious article to you but will also lookat visiting the subject again in the nearfuture as this is an issue which many ofour readers report as beingtroublesome.

seen it described in written instructions. Itwould seem the experts on these mattersfrown upon its use and I wonder why. HJB

A DIY method of dealing withballooningI am 94 years old and eight years ago mywife and I had over 60 years of married life.She had a pacemaker and I had an irregularheart and was on warfarin but we wereboth fairly fit. Then, out of the blue, Ideveloped a twisted gut and had to have anoperation quick. It took a few days toreduce the warfarin in my blood and then Ihad a colostomy and finished up with astoma. After five weeks in hospital, I hadlost nearly two stone and I went home tothe loving care of my wife and family. In aremarkably short time I began to get mystrength back and feel better. One of theproblems I experienced was ballooning andunder the care of my stoma nurses I triedall the recognised methods. I experimentedwith my diet and was amazed at all thefoods that give you wind. I bought someplastic valves that were available at thattime but they could only be used once andI did not like them. I was not happy withany of the prescribed methods and decidedto experiment to find a better method andcame up with the following:

1. Using a sealed pouch I pull back thematerial on the outside exposing the plasticpouch beneath where I can see the roundhole of the pouch exit. Using this as a targetI stick a white patch provided with thepouches, right in the middle then I pull backthe covering and use in the normal way.

2. If I get ballooning then I again pull backthe cover and, using the small sharpscissors provided to cut the right aperturein the bags, I push the scissor point into thecentre of the patch making a small

triangular hole with a little flap whichreleases the gas instantly. I wipe offanything that has come through and put anew patch on top to seal the hole. In mycase I developed a small hernia and I weara belt with a hole in it that the pouchpasses through but this does not hinder theprocess. I also have to take half a sachet ofa mild laxative every day to keep the pouchcontents soft. Sometimes when the insidewall of the pouch behind the patch iscovered with contents, I squeeze the patchand pouch between my thumb and fingerand in this way I make sure that the scissorpoint goes into a space to release the gas.

3. If after a while the pouch balloons againI repeat the process but this time I will bemaking the hole through two patches andpouch. This process can be repeated severaltimes and I sometimes have four or fivepatches one on top of the other

Conclusion: The method is simple, efficientand reliable. I have used it for many yearsand never had a patch that leaked.

It is very quick – only a couple of minutes.

There is no mess only a smell as the gasreleases.

You can eat what you like and not worryabout ballooning.

It gives you confidence that you haveballooning under control ■

Thank you so much for writing in. Wewould always recommend you see yourstoma nurse if you are having issuessuch as this, as a change in bag mayhelp, but sometimes a novel method formanaging a common problem canmake all the difference to anotherostomate who is suffering.

Your magazine – Your storyWe want to hear from you.

Letters and e–mails to the editor are welcome, but we also wantyour stories and anecdotes. Perhaps something in Tidings hasinspired you? Or maybe you’ve noticed something that has abearing on one of campaigns or projects? And then there’s hintsand tips for ostomates, we want to hear these too…and so doour readers. Don’t worry if writing isn’t your thing, because wecan do this with you. So don’t delay, drop us a line, send us ane–mail, or give us a call and we will take it from there.

Email to: editor@ColostomyUK.org or write to: The Editor,Colostomy UK, Enterprise House, 95 London Street, Reading,Berkshire, RG1 4QA.

Readers’ WritesYour letters and emails

Supporting and empowering you

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R E A L L I V E S

When I got dressed, I was interviewed againand asked how I felt having done it.Although my instant reaction was negative,this was fleeting. Within moments I realisedthat it was an enlightening andempowering experience. When I lookedagain, I saw a confident lady despite thescars and stoma bag. One brilliant thing tolearn was that I wasn’t bothered at all aboutmy bag being out. I couldn’t have imaginedthat four years ago. The male photographyassistant said I shrieked of femininity. Hewas right, on looking again I couldconfidently say ‘I was all woman’. It was abrilliant thing to do for my self–esteem,especially when the Features Editor told mea lot of women had applied to do it butonly four of us had been chosen.

The subsequent article in the May editionof Good Housekeeping focuses a lot on mytattoos. I hated how my body was beingscarred and altered by scars through twocancer operations, and then the three

On arriving at the shoot no time waswasted…I was immediately asked to gobehind a screen and remove my clothesand put on a robe. I was like: “Hello,good morning” – but was told this was soI would have no visible sock, knickers orbra marks! The folk from the magazinewere brilliant and so welcoming. I hadfun chatting to them all while my hairand makeup were done. By the time itcame to remove the robe I was feelingless nervous and more relaxed.

The photographer positioned me and click,click, click went her camera. She and thestaff checked the pictures as we went along.My make–up was touched up as requiredand more pictures were taken and so on. Iguess I was naked for about an hour withthem stopping to check the photographs.It’s a surreal experience to sit on a stoolnaked when people are looking at yourpictures and you are ignored!

I had an exciting time in January…doing a nakedphoto shoot for Good Housekeeping magazine!It all followed Colostomy UK’s request on their

Facebook group for women with good bodyconfidence. Thirty years after being diagnosed (atage 28) with body dysmorphia, this is me; I’m nowvery comfortable in my skin. I submitted my story,

was interviewed on the phone, sent in some photosand then, lo and behold, was selected as one of

four women to face the cameras! I went by train toLondon from my home in Newcastle–upon–Tyne

and stayed in a nice hotel overnight as I had to beat the shoot for 9am the next day. Cars picked me

up for every journey. I felt like a pop star.

2 8 | T I D I N G S 5 0 | S U MM E R 2 018 W E B S I T E : WWW. CO LO S TOMYU K . O R G

Jane Bland revea

F R E E P HON E 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 5 0 | S U MM E R 2 018 | 2 9

colostomy operations. Tattoos were mydecision to scar my body in a way of mychoosing and they are delicate and pretty. Ido find it unbelievable now that I once hidmy body away behind dark baggy clothingand wouldn’t have a full length mirror athome. I wish I could have felt then as I donow. Of course my body isn’t perfect in anyway but it works for me!

The other three woman were also apleasure to meet. I hope that they too havereceived as much positive feedback as Ihave. It’s very humbling to be referred to as‘inspirational’ or a ‘hero’ just because I hada photo taken! The photoshoot and thekind messages that followed have reallyboosted my self–confidence.

So my message to anyone reading this isget out there people and stop worryingabout what your body looks like, don’t waitlike I did!

Jane Bland

als all...

Irrigation:is it

worth it?Patrick writes:

At first glance my

overwhelming feeling was

no. All that faffing about

with water and cones and

tubes didn’t seem for me.

But, having taken a closer

look and actually trying it, I

now feel completely

differently.

W E L L B E I N G

Sarah Squire – Trustee and Co–Editor

Irrigat

If you have any questions, comments or experiencesof irrigation you’d like to share please send an e–mail to sarah.squire@ColostomyUK.org or writeto me at Colostomy UK.

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WE L L B E I N G

My name is Patrick Reeve and at the age of47 I was diagnosed with bowel cancer. Asmy tumour was very low in my rectum, myconsultant said that he would have toremove the rectum and anus, leaving mewith a permanent stoma. Not the news Iwas hoping to hear, but it was better thanthe alternative! So, in September 2016, mystoma was formed. I named him Cecil and,up until three weeks ago, I used acolostomy bag and changed it whenrequired. Although I’m fortunate in that mybowel habits are quite regular (and so I hada pretty good idea of when I would need tochange my bag) there was still that elementof unpredictability. In the 18 months thatCecil has been with me I have had a coupleof accidents, nothing too horrific butunpleasant, nevertheless.

I work as a mortgage broker and so I amoften away visiting clients in their homesand near other people’s toilets. Although Inever had to change my bag whilst with aclient, I knew it was something that couldalways happen. Likewise I often travel greatdistances to see clients. Having a two–hourcar journey wondering if you are going toneed to find motorway services is OK but,again, it’s not something you would dogiven the choice.

This is whereirrigation comes in!So, what is it?Irrigation is a method of emptying thebowel when you want to, rather thanleaving it to chance. In the morning, I feed1.5 litres of tepid water into my bowel via acone that fits into my stoma. This is gravityfed via a container that you hang up at head

height. It is not painful and you quicklybecome used to it. If you feed the water intoo quickly all that happens is it comesstraight back out again without bringinganything with it. However, introducing thewater more slowly encourages the bowel toeject the water and with it its contents too.The process of infusing water takes meabout twenty minutes, with stops along theway if the bowel needs to eject. I standwhen I irrigate but some people sit on thetoilet or in a chair. For me, standing meansthat everything feels like it can work better,but it’s personal choice. Once all of thewater is in, it takes about another twentyminutes for my bowel to finish ejecting thewater. After about 10 minutes, it is possibleto clip the end of the bag up so that you canmove away from the toilet safely. As Iirrigate in the mornings, I use the time(once I can move away from the toilet) toshave, clean my teeth etc, so that the timeimpact is not too great. So that the poogoes into the toilet and not everywhereelse, you wear a sleeve over your stoma. Ineffect this is a long, soft, plastic sleeve witha flange exactly the same as a colostomybag. The end of the sleeve then goes into thetoilet so that it all goes into the right place!

When I am happy that we are all done –you can feel when it is coming to an end –I remove the sleeve and shower. It is goodto be able to shower without a bag as itgives the skin around your stoma a chanceto ‘breathe’, instead of having a bag stuckto it all of the time. Once I have showered Iput on a stoma cap, rather than acolostomy bag; the bowel will not eject anyfurther contents as it should now be empty.I feel this is a great advantage as it meansthe bag is less visible (as it is much smaller)and I don’t have to be so conscious of the

bag poking out of the bottom of tee shirts,for example. Before, I always wore my bag‘outside’ of my trousers if I was wearing atee shirt as I found that tucking the bag inmade it show more under a shirt. I wear asuit whilst I am at work and again, the capis less visible. However, the main advantageof irrigation is it gives back predictability! Ican go out for the entire day now and nothave to worry about whether I have ‘been’,whether I am about to go, or be on thelookout for the nearest toilet, just in case. Ifwe were eating out, I would always beconcerned that soon after I had eaten mystoma would start to work and, although itnever stopped me doing anything, there isalways that ‘what if?’ With irrigation this hasall stopped.

At the moment I am still irrigating every daybut will be moving to every other day soon.Some people I am told, irrigate every thirdday. All the supplies you require areprovided by the stoma nurse. You re–orderthem just as you would your other stomasupplies. I have also purchased a smallhook that I place over the top of the showerscreen in the bathroom. This will also comein handy when we are on holiday as itmeans that I can continue to irrigate whilstwe are away.

How do you start?All it took was a call to my stoma nurse. Shearranged to visit me at home with acolleague to show me the ropes. I think attimes my wife, who was downstairs, musthave wondered what on earth was goingon, with three of us in the toilet and me justin my underwear! There was much ‘oohing’and ‘aahrring’ as the bowel started to ejectits contents. “That’s the best one we’ve ever

CONTINUED ON PAGE 33, COLUMN 1

tion and You

3 2 | T I D I N G S 5 0 | S U MM E R 2 018 W E B S I T E : WWW. CO LO S TOMYU K . O R G

S U P PO R T

Order Form Colostomy Irrigation and You (Patients)

Colostomy Irrigation and You is an educational DVD aimed at patients, it has been produced by theColostomy UK to raise awareness about colostomy Irrigation as a method of bowel management.Note: Not all colostomates have the potential to irrigate. It is therefore essential in the first instance to consultyour 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 £1.99 (inclpostage and packing) simply fill in your details below and return it with your cheque madepayable to the Colostomy UK, to:Colostomy UK, Enterprise House, 95 London Street, Reading, Berkshire, RG1 4QA

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Colostomy Irrigationand You

for patients

An educational DVD in association with

| Colostomy UK | Enterprise House, 95 London Street, Reading, Berkshire, RG1 4QA | www.ColostomyUK.or

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©2013-2017 ColostomyUK. All rights reserved. |

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

Please cut along the dotted lin

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Colostomy Irrigation and You DVD

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

(If you have any queries or would like to make a credit card payment, please contact the admin team at theColostomy UK office via the following methods: Telephone: 0118 939 1537 or Email: info@ColostomyUK.org)

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 your prescription/recent delivery note as proof of eligibilityand make the cheque payable to:Colostomy UK.

For payment by credit card, send yourdocuments in the post with a contacttelephone number, we will then call youto take a card payment when received.

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Photo ID CardThe Colostomy UK photo ID card isproving very popular as it can beuseful if challenged when enteringor exiting accessible toilet facilities.

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WE L L B E I N G

done”, I was told. I was congratulated – butreally it was all down to my bowel, I wasjust a bystander! A few days later, my stomanurse called to see how I was getting onand said that she went straight back to heroffice after showing me how to irrigate andtold all her colleagues about me, fameindeed!

At first, like all things I suppose, irrigationlooks complicated. But, once you have beenshown what to do and learn to do it yourway, it is really very simple. Now, just likewhen I had my colostomy bag, irrigation ispart of my daily routine. I have to get up 30minutes earlier than I did before but thepayoff is that once I have finished in thebathroom I don’t need to worry again untilthe following morning or, the morning after,when I begin to irrigate every other day.And, at bedtime, I don’t have to put a cleanbag on, which has cut down the amount oftime I have to spend in the bathroombefore bed. Sometimes, you just want to goto bed and not have the hassle of changinga colostomy bag. Every night now feels likea treat when I can just clean my teeth andgo to bed!

To say that irrigation is liberating may beoverstating its impact, but it really is a relief

CONTINUED FROM PAGE 31, COLUMN 3 to be able to go about your day withoutconstant thoughts of ‘the bag’.Notwithstanding all of that, I still make surethat I have supplies with me, whenever I goout. So far, since I have been irrigating Ihave not ‘been’ during the day, but I stillthink it prudent to have supplies to hand.

The last advantage that I think is worthmentioning is wind! We’ve all been there,in a quiet room, full of strangers, when yourstoma decides that now would be theperfect time to expel the noisiest wind youhave ever heard! Because irrigation emptiesthe bowel, there is less wind, which cannotbe a bad thing, right?

I would say, if you are considering irrigation,please give it a try. If you don’t get on withit or you just decide that you don’t havetime, you can go back to a colostomy baganytime you want. I am sure that once youhave had a few days of predictability, youwon’t look back. And, there is a large rangeof stoma caps that you can try, some justlook like plasters and so are really discreet.

Good luck and I hope that you give it a try.

For details of my complete cancer ‘journey’take a look at my blog at: https://http2279.wordpress.com

Patrick Reeve

Irrigation is a method of colostomy management which involves usingspecialist equipment to introduce warm water into the bowel via thestoma. The water causes muscular contractions (peristalsis) within thebowel which in turn cause expulsion of its contents.

Many ostomates prefer this method of colostomy management as itgives them a sense of control. If you feel you would like to try irrigationyou should first contact your stoma nurse to see if you are a suitablecandidate. If you get the go ahead they will then arrange a time to teachyou. For more information see the Colostomy UK website or purchasethe Irrigation and you DVD using the form below.

Order your complimentary sample of Ostopeel now:

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1. Remove Plug from packaging. 2. Remove protective backing from adhesive flange.

Figure 1

Lubricatedsoft foamstalk

Adhesive flange,skin barrier

Charcoal filter

Stalk before andafter expansion

On the outside of the plug, there is acharcoal filter (figure 1, top right) whichallows gas/wind to be expelled preventingnoise or odour.

The spiral adhesive (sticky) flange (skinbarrier) (as shown in figure 1) has beenspecifically designed to provide a secure,flexible adhesion that is skin friendly. Thisensures your skin remains comfortable andhealthy while being flexible enough toadapt to the movement of your body.

Who can use the Conseal plug?The Conseal plug is preferable forcolostomates with an ‘end’ colostomy thatproduces a regular, soft–formed stool. If youare unsure of the type of stoma you have –you should contact your stoma nurse anddiscuss this prior to using the Conseal plug.

Due to the adhesive flange size of theConseal plug you would need to have astoma size of less than 45mm, as thecutting zone on the back of the flange can’tbe cut any larger than this.

How long can the Consealplug be worn?1–12 hours.Although the Conseal plug can be worn forbetween 1–12hrs; your normal bowelpattern/activity will dictate how long it canbe worn.

The Conseal plug should ideally be insertedinto your colostomy after a normal motionhas been passed into your stoma pouch.The plug should be removed when it isanticipated the bowel needs emptying or

you have a feeling of fullness, which meansthe stoma needs to work. People with acolostomy who have a regular (bowel)movement, or use colostomy irrigation mayuse the Conseal plug for up to 12 hours. Forothers, the plug would only be worn for theperiod during their chosen activity such asswimming, sports, dancing or intimatemoments.

When the Conseal plug is first tried, somepeople find a period of training is beneficialto give their bowel time to adapt to usingthe plug. For some this may be a matter ofdays – for others it may take a little longertwo–four weeks. After the initial trainingperiod, the Conseal plug can be worn for aslong as you find it comfortable anddependent on how active your bowel is.

Can I use the same Consealplug on more than oneoccasion?No.The Conseal plug is designed for single useonly. Washing, disinfection or sterilisation ofthe plug may compromise the materials ithas been made with; this could causephysical harm to the stoma or infection tothe individual using the plug.

Do you have to wear theConseal plug regularly?No.The plug can be worn occasionally. Manypeople wear the plug for short periods only(as noted earlier) or when wearing certainclothing and wishing to achieve a greaterfeeling of discretion.

The Assura® Conseal Plug can be used bycolostomates who have a colostomy andproduce a regular soft formed stool.

The single–use plug is very easy to use,enabling individuals to have periods duringthe day where they replace their usualbag/pouch with this small discreet plug.This may be as part of their daily stomamanagement routine or for shorter periodsduring activities such as swimming offeringa greater feeling of discretion, control andconfidence.

The Conseal plug may not be right foreveryone, it is a matter of choice and shouldalways be discussed with your local stomanurse prior to using. Please note: the plugis not suitable for people with anileostomy or urostomy.

“I use the Conseal plug during theday, I am a busy grandma whobabysits regularly for mygrandchildren. The plug gives mefreedom from the bag and confidenceduring the day when I am with them.It allows me to be active with themwithout the worry of having to lookafter my Colostomy bag”. Mrs A

What is the Conseal plug?The Conseal plug has a lubricated soft foamstalk which is attached to an adhesive skinbarrier (flange), shown in figure 1.

The stalk of the plug acts like a ‘bung’ wheninserted into your colostomy. Onceinserted, the coating on the stalk breaksdown when it meets the moist lining of thebowel, so that it can expand (much like atampon) and prevent faeces from leavingthe bowel. You can see this difference in thestalks in figure 1.

The Conseal plug – an optionfor the colostomateThis feature provides an overview of the Consealone–piece Plug and answers frequently asked questions.

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Do you have to Irrigate touse the Conseal plug?No.However, if you do irrigate this is an optionfor you and you may wish to wear the plugin between irrigations.

Will the Conseal plug everpop out or be ejected fromthe stoma?No.The plug will not just pop out. The adhesiveflange will keep it securely attached to thearea around your stoma. However, duringthe training period, the plug can be pushedout of your stoma (under the flange) simplybecause your bowel is not used to the plug(this is because of contraction of the bowelagainst something new being inserted). Asyou relax and get used to the plug this willusually stop happening. If this does happento you, remove the plug and re–insertanother one.

Will there be rapidevacuation of faeces when Iremove the Conseal plug?No.Once the plug has been removed, there willbe time to change to your normal pouchbefore the faeces will start to come out ofyour colostomy. Just plan to have yourproducts ready as you would do for aroutine bag change/irrigation.

Can the Conseal plug causeconstipation?No.During the training period a few peoplehave experienced constipation, however asthe bowel gets used to the plug this willsettle back to your normal pattern. If you doexperience constipation at any time, useyour regular pouch until your output returnsto normal again and then go back totrialling the Conseal plug. Try to follow ahealthy, well balanced diet with plenty ofdrinking water to reduce the risk ofconstipation.

What should I do if I havediarrhoea?A Conseal plug should not be used if youare experiencing diarrhoea. If diarrhoeaoccurs suddenly, remove the plug and wearyour normal or a drainable pouch. Onceyou are back to your normal regular bowelpattern you can restart using the plug.

Will the Conseal plug leak?If you experience unexpected diarrhoea,there may be a possibility of leakage underthe flange or through the filter (please seeabove question related to diarrhoea).During the initial training period, a fewpeople have reported some faecal leakageunderneath the flange, however this hasstopped once the bowel has got used tothe Conseal plug. If you do experience aleak, it is worth considering if you have anunpredictable bowel pattern and left theplug in for too long. If you have anyconcerns about this, please discuss withyour stoma nurse

Can the Conseal plug causeany irritation or discomfortto the bowel?During the training period, you may initiallyfeel some slight irritation or discomfortwithin the bowel (because the bowel isgetting used to the plug). If this is the case,the plug should be removed and the bowelrested for a day or two before a newConseal plug is inserted and retried.Although the plug “stalk” is lubricated youcan always add more lubricant gel and thismay reduce irritation of the bowel wall.

Some colostomates have reported seeingflecks of blood on the stalk of the plugwhen they remove it from the stoma.Although surprising to see, this is notunusual, the bowel lining (mucosa) has ahealthy blood supply and just like when youclean your stoma, you may see spots ofblood on your cleaning tissue. There is noevidence to suggest the Conseal plugcauses any long term trauma to your boweland there have been no reported allergicreactions.

“I regularly use Assura Conceal andthink it is brilliant. I practicecolostomy irrigation and am not sureI would use the plug if I didn’t. If I amgoing to an event where I do notwant embarrassment of ‘noises’ frommy stoma I use a Conseal plug and itgives me 100% confidence. Amarvellous invention.” CB

Will the Conseal plug giveme more freedom?Yes.The Conseal plug is frequently reported togive greater freedom of movement. Youmay find it easier to do physical activitiessuch as swimming, football, dancing etc.The plug is also a nice alternative forintimate moments.

“I have been irrigating and usingConseal plugs for about seven years.I really like them as they fitcomfortably and you can almostforget about it. They also stop anyescape of wind which is really good.” Mr DO

How do I go aboutobtaining the Conseal plug?The Conseal plug is available onprescription. It is advisable you speak toyour stoma nurse to find out which sizewould be most suitable for your needs.

There are four sizes of Coloplast Consealplug, and it is available as a one–pieceproduct.

Coloplast advise to start off with the smaller35mm Conseal plug as bowel adaptationtime is dramatically reduced.

We hope this article has answered some ofyour questions about the Conseal plug. Ifyou have any additional questions pleasecontact Coloplast Care telephone line on0800 783 1434, option 2. If you areinterested in trying the Conseal plug pleaseseek advice from your own stoma nurse.

Wendy OsborneStoma Nurse Specialist

Clinical Lead – Coloplast Ltd

3. The plug is lubricated to allow easy insertion into the stoma. 4. Gently insert the plug into your stoma, ensuringthe adhesive flange (skin barrier) fits around the stoma.

5. Press the adhesive flange to the skin and then gently placeyour hand on the centre of the flat cap for a few seconds to

ensure adhered to your skin.

WE L L B E I N G T H E CON S E A L P L U G

gure 2: Step by Step Guide for applying the one piece Conseal plug.

Win up to £25,000 with UnityUnity is a lottery with a difference. We receive income directly from the number oflottery players we recruit, so we need your support. For every £1 entry – 50p comesdirectly to the Colostomy UK.How it worksFor just £1 per week you will be allocated a six digit Unity lottery number. You can purchase more than one entry if you wish. EverySaturday, the lucky winners are selected at random and the prize cheques posted directly to you, so there is no need for you to claim.You must be 16 or over to enter. Winners have to match 3, 4, 5 or all 6 digits of the winning number in the correct place in the sequence.

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How many times have you been told that exercise is good foryou? Depending on how you say it, this can sound like a simplequestion or a cross Mum nagging a child to go out and get somefresh air. Although I wouldn’t want you to think of ColostomyUK as the latter, I’m not going to make any excuses for re–statingthat there are both physical and mental benefits to being anactive ostomate. And, just to clarify, when I say active I don’tnecessarily mean things like playing football or runningmarathons. A walk to shops or a potter in the garden counts too.

Evidence of the benefits is plentiful. I could, for example, extractsome choice comments from the Department of Health’s report(2011) Start Active, Stay Active. One of the things it makes clear isthat adults who engage in daily physical activity (whatever their age)are at a reduced risk of depression, distress and anxiety than thosewho lead sedentary lifestyles. I could also quote from more recentsources, such as last year’s excellent article by Sarah Russell (ostomyhealth and well–being specialist) in the British Journal of Nursing.But, if you’re like me, then you wouldn’t find this more academicapproach quite so inspiring as a ‘real’ human story. Hence my tactis slightly different. I’m going to tell you about the ostomate–onlyswimming sessions we recently organised and let one of those whoattended tell you, in his own words, the immediate and lastingimpact it has had on him and his young family.

Thanks to funding from the National Lottery, in March this year wewere able to run two ostomate–only swimming sessions atSheppey Leisure Centre in Sheerness. The idea followed Giovanni’s(our Fundraising and Development Manager) visit to a meeting ofSheppey Ostomy Group Support (SOGS). This is run by ShelleyLawes who, if you do social media, will know is the lady behindthe blog and Facebook page ‘Stoma in a Teacup’. Rather thanrestrict the sessions to members of SOGS, it was decided to openthem up to any ostomates and their families that wanted to attend.We all know just how daunting the prospect of swimming can befollowing stoma surgery. Indeed for some, the fear of bags leakingand people ‘bag gazing’ is enough to put them off altogether. Ourhope, therefore, was that by offering a safe and supportiveenvironment, we could tempt ostomates back into the pool andkick start their confidence swimming ‘with the public’. With this inmind, there were no activities organised. Instead, everyone agreedthat it was better just to let people do what they wanted and at apace they felt comfortable with.

We had a wide range of ages attend and this included MatthewBanister and his family. Shortly after the session Matthew had thefollowing to say:

“I would like to thank Colostomy UK for hiring out theswimming pool and allowing me to go swimming inthe company of my family and fellow ostomates. Ihave never been swimming with my boy and he isseven years old. When I looked back I realised I hadn’tbeen swimming for 20 odd years. Ever since I receivedmy stoma in 2003 I lost the confidence to goswimming. I always thought it would leak and I couldnot cope with the embarrassment. For my wife it wasalso a big step as she hasn’t been swimming due tobeing image conscious. It has given us some greatmemories, seeing my little boy’s face and seeing howgood he can swim. I am still hesitant to go to a publicpool, but I will go. The other good thing that come outof it is my wife now takes my little boy swimming andplans to do so regularly. Thank you to the ColostomyUK team for all the hard work you do and all thechances that you give people like me to have fun andmake great memories.”

As I hope you can see, for the Banister family at least, attendingthe swimming session was successful in many different ways. Notonly did it help to get Matthew in the water again, it also enabledthe family to play together and create some memories that theywill treasure forever. In this story, the physical and mental benefitsof exercise are there for all to see. Like many people who undergostoma surgery, Matthew started to wall off parts of his previous life;Sheppey triggered the process of breaking these walls down. I oftenfeel that words like ‘empowering’ and ‘empowerment’ are over–used, but in this instance I believe their use is fully justified.

The swimming sessions in Sheppey were organised as part of ourwider ‘Active ostomates’ project. So, if you are a member of asupport group, and would like to explore ways in which ColostomyUK can assist in getting you and your fellow ostomates active thenget in touch. And, please remember, this doesn’t have to beswimming. It’s about what works for your group. As you will haveprobably seen in previous editions of Tidings, we have helpedsupport groups in various parts of the country to start everythingfrom chair yoga to archery. ■

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Richard Biddle – Writer and Researcher

Chlorine, the breakfast of champions

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In a league of our ownAt Colostomy UK one of our key objectives is to spreadawareness of what is still very much a misunderstood ‘hiddencondition’, and to show that having a stoma need not be a barrierto being active and achieving anything you put your mind to.

What better way to do this then than by starting up our ownRugby League Team? If we’re going to use sport as a vehicle toshowcase that people with a stoma can do anything, then whynot use the toughest team sport out there!

Back in January through Tidings and social media we asked forpeople who were playing, or wanted to give Rugby League a go, toget in touch. The idea was to put our toe in the water and see whatthe interest levels were and whether it was an idea worth pursuing.

The response was positive enough for us to think that we might beable to get something off the ground. Indeed people fromthroughout the country got in touch and not just from the‘traditional’ Rugby League playing areas. For every person from Leighor Chorley we’ve also had people contact from Sidcup andColchester.

Due to the wide range of ages and Rugby League experience ofthose who’ve put their hand up to play, we have decided to startoff by giving Masters Rugby League a go and not much morethan six months after we first floated the idea, Team ColostomyUK Rugby League will make its debut against Medway DragonsMasters at Medway Park on July 21.

Masters is strictly a social version of the sport and the rules areslightly modified to cater for players of all ages and abilities.

SecuriCare and Welland Medical have come on board as partnerswhich has allowed us to produce an eye catching kit that welaunched at the London Broncos v Sheffield Eagles match on May20.

It’s been great for us to get to know a little bit about those thathave signed up to play for us. It is also really encouraging todiscover that there are already a number of people out there witha stoma playing Rugby League. They are shining examples of howhaving a hidden condition doesn’t need to be an insurmountablebarrier to living life how you want to.

Kav Ellison is 27 years old and plays for Chorley Panthers. In 2015he had stoma surgery due to Ulcerative Colitis. In his own words:

“I started playing rugby at high school and soonjoined The Panthers. I represented Lancashire twicein my younger days and I’ve played roughly forabout 14 years. I have been coaching for 3-4 yearsand got my level 2 coaching badge last year. I canhonestly say that having a stoma hasn’t had muchimpact on me actually playing rugby; it did thoughpush me towards coaching a bit more.”

John Flood hails from Sidcup in Kent. His Team Colostomy UKdebut will be his first ever game of Rugby League, although hehas a background in Rugby Union. John last played Union in2014 and since then has had 29 operations in four years.

This is John’s story:

“I’ve had ulcerative colitis since a very young age butit started getting worse around the age of 19 or 20. Iwas in and out of hospital in my late 20s and early30s and unfortunately medication just wasn’t helpinganymore.

WE L L B E I N G

Active ostomates

Giovanni Cinque – Fundraising and Development Manager

Welcome to the regular update page dedicated to our ‘Active ostomates’ project.‘Active ostomates’ supports you to get fit and healthy with a range of programmes. Some aredelivered through support groups; some can be done in your own home; others you need tosign up for. We will also be promoting activities and events that can help everyone worktowards being more active.

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WE L L B E I N G

“In 2013 it was put to me that my best option wassurgery. So in September 2013 I had my firstoperation (Total Proctocolectomy). Unfortunately, dueto complications, this was just the start of a longperiod of hospital visits – which resulted in mehaving a permanent Ileostomy. Thankfully myoperation last November was the ‘final final’ one andso far this has been the best I’ve felt in a long time.Unfortunately I thought this had put an end to myrugby career. Then I read about Team Colostomy UK,and I wanted to join this huge and exciting project,hoping it can spur me on to play again.”

The journeys Kav and John have faced post surgery have beenvery different, but what both stories highlight is that you can stillachieve anything you put your mind to. The 17 men who will donthe Team Colostomy UK shirt on July 21 are ample proof of this.

We are always on the lookout for new players so if you wouldlike to join us please email Giovanni.Cinque@ColostomyUK.org

To find out more about Team Colostomy UK Rugby League findus on twitter @TeamColostomyUK or call 0118 939 1537 oremail Giovanni.Cinque@ColostomyUK.org

Fancy a dip?After the success of our ostomate only swimming sessions inSheppey earlier in the year we are looking for other opportunitiesfor support groups to partner with us to host further swimmingactivities.

If you’re interested please call us on 0118 939 1537 or emailGiovanni.Cinque@ColostomyUK.org

Stress Free OutdoorsColostomy UK are delighted to announce that we have teamed up with Stress Free Outdoors to offer agreat deal to ostomates and their families who would like to take advantage of the ‘Great Outdoors’.

Based in Cornwall, Stress Free Outdoors offer a range of guided walks, camping trips and bush craftactivities, with events that last just a couple of hours through to weekend adventures. Prices start at aslittle as £20 per person.

Run by ostomate Al Edwards, Stress Free Outdoors is a social enterprise that aims to make a differencefor people living with a stoma and/or inflammatory bowel disease, and their families.

Colostomy UK and Stress Free Outdoors are offering 33% off all bookings. To take advantage of thisoffer and for more information visit www.stressfreeoutdoors.co.uk To qualify for the discount justenter the Code colostomyuk at checkout (please note the code needs to be entered in lowercase).

Revised and updated Sportand fitness after stomasurgery booklet availableWe have distributed over 6,000 copies ofour Active ostomates: sport and fitnessafter stoma surgery booklet since itsinitial launch in 2016. The newlyrevised and updated version is nowavailable which includes newsections on modified sports andupdated advice and links tonumerous activities you can try.

To get hold of your copy eitherdownload it for free on ourwebsite, call us on 0118 9391537 or emailinfo@ColostomyUK.orgWhy not also grab a copyof our Healthy eating booklettoo? This gives useful guidance on howto achieve and maintain a healthy diet.

Chair yogaSupport groups in Sheppey, Chatham, Cheshire, Stevenage,Dartford and Bracknell are amongst those who are taking part inour free chair yoga programme.

If you would like further information on chair yoga or are part ofa support group and would like to join our ‘Active ostomates’programme please call us on 0118 939 1537 or emailGiovanni.Cinque@ColostomyUK.org

Freephone helpline:0800 328 4257

Supporting and empowering youActive Ostomates:Sport and �tness

after stoma surgery

www.ColostomyUK.org #ActiveOstomates

Colostomy UK kit and merchandiseAll profits raised from the following items

help us to support and empower ostomates.

Order online at www.ColostomyUK.orgor complete the order from below.

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

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

Title:

Name:

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Postcode:

Tel:

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£

Team Colostomy UKHooded sweatshirt

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Iris umbrella £5.50 Shipping £1.99Shield yourself from the rain and look good at the sametime. Ideal for your handbag. Manual folding polyesterumbrella in purple with white Iris logo on four panels.Supplied in a nylon sleeve with a Velcro fastening.Size: 90cm x 35cm.

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Colostomy UK £11.50Logo T–Shirt Shipping £2.99Stand out from the crowd and show your supportfor Colostomy UK in our brand new logo T-Shirt.100% heavy duty cotton.

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Anatomy aprons £156.00 Shipping £4.95A fantastic teaching tool for educating people about thevarious kinds of stomas. Aprons can help explain avariety of different surgical procedures includingcolostomy, loop colostomy, transverse colostomy,ileostomy, colectomy and hemicolectomy.

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Otto ostomy Standard £1,020.00anatomy model Advanced £1,260.00 Shipping £4.95

An excellent teaching resource. Using a simplecolour–coding system for the various organs, Otto canhelp patients better understand the workings of theirdigestive system and urinary tract. An end or loopcolostomy and ileostomy can be demonstrated, alongwith a urostomy and gastrostomy tube replacement.Standard Model

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F U N D R A I S I N G

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After three miscarriages Jodie didn’t think she would beable to have children. How wrong she was… now her two

little ones are accompanyingher on the Colostomy UK

50K challenge

Jodie Hookway tells her story:

Caption ??

I wasworriedthat I

couldn’thave afamily

I spent most of my teenage years unwell,with my illness misdiagnosed. Finally in2003, when I was 18, I was diagnosedwith Crohn’s disease. I tried variousmedications and infusions to keep thedisease under control, includingazathioprine, methotrexate, Pentasa andother biologics. These worked for a whilethen I would relapse twice as bad. Then,in 2012, I was also diagnosed withperianal fistulating disease. This followedan MRI scan which also revealed that thecomplex perianal fistulation had causednumerous abscesses. These were treatedusing seton wires in areas that weren’tvery comfortable and required packing bydistrict nurses.

CONTINUED ON PAGE 43, COLUMN 1

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www.ostomycoversbylinda.co.uk

Ostomy– by Linda

� Made to fit any stoma bag� Most colours

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Made by an ostomate for ostomatesTel: 01205 723 327

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Pack sufficient supplies for your stay. At leasttwice the normal usage at home.

Take all supplies and travel stoma kit ashand luggage.

Ask the airline in advance if you need extrahand baggage for your supplies.

Avoid food and drink that are likely to causeupset or excessive wind the day before youtravel.

Pack all your normal medications and anythat may help an upset stomach.

Pack some form of electrolyte replacementsolution in case you become dehydrated.

Drink bottled water, avoid ice in drinks anduse boiled or bottled water to clean aroundyour stoma, and to irrigate in countrieswhere water could be contaminated.

Store your supplies in a cool place, out ofdirect sunlight.

‘Check in’ online 24 hours before departure to secure your preferred seat.

Remember:

� You can request not to go through a bodyscanner but if you do, you WILL besubjected to a full search.

� Most UK airports now operate a hiddenconditions lanyard or bracelet scheme.These are available from assistancereception areas. Wearing them identifiesyou to staff as having additional needs.

� If you need assistance on your flight youshould advise your airline at least 48 hoursbefore your departure date.

� You should AVOID requesting the presenceof a healthcare professional if you aresearched. Airports do not generally havesuch staff on standby and the likelihood isthat you will miss your flight.

� You can only take more than 100ml ofliquids in your hand luggage if there is aprescription label on said item.

� You should expect to be treated the sameas everyone else. Having a stoma does notexclude you from any security checks.

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:

Supporting and empowering you

Freephone helpline:

0800 328 4257

www.ColostomyUK.org

Supporting and empowering you

Travel Advice

Having a colostomy should not prevent

you from travelling at home or abroad

www.ColostomyUK.org

Freephone helpline UK only:0800 328 4257International: +44 118 939 1537

Office hours only

Travel Certi�catefor people with a colostomywww.ColostomyUK.org

Supporting and empowering you

General Enquiries:0118 939 1537

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

or

E-mail: info@ColostomyUK.org

or download from our

Website: www. ColostomyUK.org

H S U P PO R T

From then on, everyday life became astruggle. Holidays were always plaguedwith an abscess or severe symptomsincluding bloating, which ruined any chanceof fun. The simplest of things became hardwork and making plans was pointless as Inever knew how the disease would affectme from one day to the next. Thankfully, Iwasn’t alone. My family and, especially myMum, were with me every step of the way,even though at times I must’ve been anightmare to cope with.

Although I wanted to start a family, afterthree miscarriages I was ready to give up.But, with the help of a fertility doctor andsimple blood thinning injections Iconceived. In May 2013 I had Chad, mymiracle baby, who made everything I hadbeen through worthwhile. Unfortunatelyshortly afterwards my Crohn’s flared againand in June 2014, when Chad had justturned one, I had a loop colostomy formed.The surgeon decided that by the faecesbypassing the rectum it would ease theperianal symptoms and buy me more timeto extend my family in the future.

All was going great for a few years. I lovedthe freedom that the bag gave me. Therewas less pain, no abscesses and no runningto the toilet. I had more control, whichmeant I was finally able to enjoy being aMum to Chad. We got into a routine of meworking and him going to nursery. We wereliving ‘normal’ life for a while. I still hadCrohn’s flare–ups, but these were managedwith steroids and antibiotics alongsidehumira which, after receiving funding for it,I used to self–inject weekly. For me havinga colostomy was the best decision I made,it allowed me to do anything.

Then unexpectedly, and without trying, I fellpregnant again. In April 2016 I had mybeautiful daughter Ayda, again via c–sectionand after using the same blood thinninginjections throughout thepregnancy. My family was completeand I had no complications beingpregnant with the colostomy. Itgrew with my bump andfunctioned as normal.

Once again though, I had a Crohn’sflare–up following Ayda’s arrival.This time it didn’t go into remissionand after 12 months onprednisolone steroids, variousantibiotics , multiple scans, scopesand tests I was referred back to thesurgeon.

In the operation that followed,approximately 20cm of bowel wasremoved along with lots ofcomplex fistulas tracking todifferent organs including the

CONTINUED FROM PAGE 41, COLUMN 3 colon, rectum and bladder. Due to thecomplexity of the operation, I had to waitalmost 12 months before the decision wastaken to go ahead. And, even then, thesurgeon was unclear whether my rectumcould be saved or whether a fullproctocolectomy would be required. Myemployers were great and supported meeven when I was spending the majority ofthe time tired and popping painkillers.

The surgical decision came as a shock. As ayoung Mum I had to prepare for majorsurgery again, so I started a blog onFacebook called Stoma Mum with the ideaof helping others in same situation as me.The surgery date was eventually set for 14March 2018 and I was put on a six–week‘ensure’ diet to optimise my bowels andwean down the prednisolone from 40mg to10mg. I managed to achieve this a fewweeks before surgery. Coming round fromsurgery I didn’t know what to expect, I wasscared and nervous but after nine hours theoperation was a success.

I class myself as fortunate. My surgeons didthe best they could for me. They saved myrectum by stapling it off inside, leaving myrectal stump intact. My loop colostomy wasmade into an end colostomy and a herniarepaired. 30cm of small bowel and colonwere removed along with fistula removal. Aloop ileostomy was then formed as the re–join of the bowel at that point wasconsidered risky and may not have attacheddue to the long term steroid use.

Now I have two bags and I have learntquickly that two are very different. Theileostomy requires a drainable bag whichhas taken some adjusting to as I used aclosed bag for years. I never feel fully cleanand it takes time to get ready in a morning,but this is nothing compared to beingincontinent as I was before the operation.They hope to reverse the ileostomy within

six months so eventually, all being well, Iwill just have the end colostomy which, atthe minute, looks completely different tohow it did when it was a loop colostomy.

I believe that the surgery saved my life andwill give me a better quality of life with mytwo babies. It’s early days as I only hadsurgery a few weeks ago but whether it’sone or two bags I believe that with the rightsupport and the right mind set I can achieveanything. I now look forward to the future.Crohn’s disease is a disease that affectseveryday life and I’m very lucky that myfamily support me always and love meunconditionally. No matter what the futurebrings I will keep fighting!

Jodie Hookway

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WE L L B E I N G

To support Jodie visit:www.justgiving.com/

fundraising/jodie-hookway

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F U N D R A I S I N G

2018 Raffle The response to our 2018 raffle has been fantastic so far! Tickets wereenclosed with the last issue. If you have run out, then further books can beobtained by emailing us or calling 0118 939 1537.

This year we are offering a first prize of £3,000. A second prize of £500and four fourth prizes of £250.

Tickets can be sent back anytime up until December 14 and the draw willtake place on December 21. Winners will be notified as soon as possible after the draw.

Ian’s Gateshead 10K runOn July 8 Ian Condon is competing in the Gateshead 10K to supportColostomy UK.

Ian has a permanent Ileostomy following surgery for bowel cancer.In his own words he is:

“..taking on this challenge to help raise awareness,remove the stigma of having an ostomy and to continueoffering help and support to ostomates across the UK.”

You can support Ian via his Just Giving page at:www.justgiving.com/fundraising/ian-condon

Thank you!Unfortunately we don’t have the space to thank everyone who has madedonations to Colostomy UK since the last issue, but we would like toacknowledge a few people and organisations that have been busy raisingfunds for us.

v Ann Hughes raised £400 from her evening of Rock ‘n’ Roll atThe Civic in Stourport.

v Betty Granger donated £250, the proceeds from her garage sale.

v Carr Mill Primary School in St Helens had a ‘Purple day’and raised £250.

v Helen Oldknow ‘Braved the shave’ and donated £400.

v The Wessex Stoma Care Nurse Forum raised £80 fromtheir annual raffle.

v Adele Louth took part in the Sheffield Half Marathon, finishing ina time of 2 hours 45 minutes, and raising £537.

v On May 12 Ryan Rees shaved his head in support of Colostomy UK andthe Little Princess Trust and raised over £3,000.

v In April Emma Turner braved the Blenheim 7K run raising nearly £200.

Fundraising focus

Giovanni Cinque – Fundraising and Development Manager

CASH PR I ZES •

CASH PR I Z ES •

CASH PR I Z ES •

CASH PR I Z ES

£1Ticket5 per bo

ok

2nd prize £500

4 prizes of £250£3,0001s

tprize

No tickets may be sold by or to anyone under 16 years. No tickets may be sold on the street.

Promoter: Mr Monty Taylor, Colostomy UK, Enterprise House, 95 London Street, Reading, Berkshire, RG1 4QA

Winners will be noti<ed by telephone, email or post and announced in the Spring 2019 edition of Tidings

Colostomy Associa

tion t/a Colostomy UK is a charity registered in England and Wales No: 1113471

Lottery Licence no: LOT000141Draw date: Friday 2

1 December 2018 a

round 12:00noon

at Colostomy UK, En

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AnnualPrize Dra

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Please return payment, ticket stubs and unsold tickets

no later than Friday 14 Decembe

r 2018 to:

Colostomy UK, Enterprise House,

95 London Street, Reading, RG1 4QA.

Draw to take place on: 21 December 201

8

at Colostomy UK, Ent

erprise House, 2nd

Floor,

95 London Street,

Reading, Berkshir

e, RG1 4QA

Late entries will be treated as donations.

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Supporting and em

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CASH PR I Z ES •

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CASH PR I Z ES

Unity LotteryIt’s now been over two years since theUnity Lottery replaced our 500 Club andwe are glad to say that not only is itspopularity growing with supporters on aweekly basis, they are also winningregularly as well!

Members have the chance of winning amain prize of £25,000 each week (plus a£2,500 donation to Colostomy UK), aswell as smaller prizes of five free draws,£25, and £1,000. Entry is only £1 per weekand we receive 50p for every £1.

Grants and TrustsWe are grateful to the following organisations that have recently supported ColostomyUK: The Childwick Trust, the Cardy Beaver Foundation, The Donald Forrester Trust,The Ganzoni Charitable Trust, Constance Travis Charitable Trust, The Deakin Trust,Payne-Gallway Charitable Trust, RG Hulls Charitable Trust, Coral Samuel Charitable Trust.

Text givingYou can now make a donation to the Colostomy UK with a text message! Whatevermobile network you’re on, simply text our unique code CASS01 and an amount of £4,£5 or £10 to 70070.

Donating via text is free. There is no cost to you for sending the text message and yourfree allowance or bundle will not be affected – the only charge will be the donationitself. What’s more, 100% of your text donation (including Gift Aid) will be sent toColostomy UK.

The amount you donate will be added to your mobile phone bill or deducted from yourpay as you go credit. JustTextGiving will send you a link in a text message confirmingyour donation

Leave a LegacyGiving in your will is a truly special way to make a lasting difference. It will help the ostomates of tomorrow, their family membersand carers, receive life–changing support from Colostomy UK.

What your gift meansLegacies large and small can have an extraordinary impact for all the people we help and support. They can:

v Ensure there is always a voice at the other end of the phone.

v Train volunteers to provide support at open days and in hospitals.

v Fund our campaign for a stoma friendly society.

How to leave a legacyA solicitor can help you to write a will or, if you already have a will, a codicil. Your legacy could be used wherever it is most neededor you can choose to support a specific area.

Your solicitor will need the following information on our charity:

Name: Colostomy UK

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

Charity Commission registration number: 1113471

After you have provided for your loved ones we hope you will consider a gift to our Charity.

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WHAT WILL YOURLEGACY BE?

Interested in fundraising for us?A successful event doesn’t need to raise huge amounts of money. Rest assured, whether it be £5 or £500, Colostomy UK willput it to good use. We are here to support your efforts in every way we can, including fundraising materials, sponsorship formsor just advice on where to start. To find out more contact Giovanni Cinque – Giovanni.Cinque@ColostomyUK.org or callus on 0118 939 1537.

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

Freephone helpline:

0800 328 4257

Supporting and empowering you

Looking for onlinesupport?

The Colostomy UK closed Facebookgroup is a safe and friendly spacewhere you can speak with thousands ofother people who live with a stoma.This welcoming community is a placeto share hints and tips, stories andnews and to reach out for support fromother people with a stoma.Search for Colostomy UK supportgroup on Facebook and request to join.We look forward to welcoming you.

www.ColostomyUK.org

Without donations from people like you, Colostomy UK could not continue its vital work supporting, helping andempowering ostomates. Thank you for supporting us.

Please fill in this form to make a donation. Check your details are correct, then return the completedform by post to: Colostomy UK, Enterprise House, 95 London Street, Reading, Berkshire, RG1 4QA.Telephone: 0118 939 1537 if you have any queries. Registered Charity No: 1113471�

I would like to make a donation of:

£20 £30 or whatever you are able to give

I enclose a cheque or postal order made payable to Colostomy UK

Please debit my Visa/Mastercard/Maestro Card with the amount specified

Card number (Maestro only)

Expiry date Security code Start date Issue No.

Signed Date

£

My Details: Title: Forename: Surname:

Home address:

Postcode:

Telephone (home): Mobile:

Email:

Date of Birth: Month and year of operation:

Reason for your stoma: Stoma type: Colostomy Ileostomy Urostomy

Tick as appropriate: I would like to be kept informed by: � Post � Email � Telephone. Please tick if you would like a receipt I would like to receive information about: � Tidings magazine � Bag and product manufacturers � Colostomy UK, the work it does,including training, conferences, volunteer opportunities and fundraising.We will never sell or swap your information with other organisations. You can change how we communicate with you at any time.Call us on: 0118 939 1537 or email: info@ColostomyUK.org

To donate, please fill in the form, check your details are correct, then return this page to Colostomy UK – thank you.

I would like to make a regular donation – 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 £20 £30 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 allow one month’s notice to ensure donation processes through banking system and state your donation amount in words:

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

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

Name: (IN CAPITALS)

Signature: Date: / / 2018

Thanks to the gift aid scheme – we can reclaim money on yourdonation from the government. For every pound you give us, wecan claim an extra 25p. For example, a donation of £20 becomes£25 with gift aid, at no extra cost to you.

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

Signature: Date: / / 2018

Make a donation

D D M M Y Y

Thank you for your gift

(Maestro only) (Maestro only)

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S U P PO R T

Coventry Stoma Support Group Meet First Wednesday of every month.

Venue Christ the King Church library, 15 Westhill Road,Coundon, Coventry, CV6 2AA

Time 7:00pm till 9:00pm

Contact Martin 07947 385 643

We regularly see 25 to 30 members every month, and have aguest speaker from one of the many stoma care companies,followed by refreshments, and then general informal discussionbetween ourselves on any subject that any member wishes tospeak about. There are no membership fees, and all ostomates,relatives and their friends are welcome.

We held our first, in house Christmas social meeting in December2017, and it was a great success, so hopefully will become anannual event, and we will all continue to support each otherthrough our group.

I am a volunteer with Colostomy UK and was asked to start asupport group in 2012. I have been running the Mid Devon OstomySupport Group for just over five years now. We are a self–fundedgroup offering support to local ostomates, their partners, friendsand family. We usually have between 20–30 people come along.

We have three to four meetings a year at the Boniface Centre inCrediton on Saturday afternoons. These informal meetings are forpeople with any type of stoma. We do not have any membershipfees and people are not obliged to come every time, however manydo and make lots of friends in the process.

Our only outgoings are hire of the hall, the cost of lightrefreshments (tea, coffee, cakes) and sometimes a speaker to varyour meetings. People contribute towards these expenses and wealso have a draw each meeting, which brings in some money thatwe hold as a float. We are also very fortunate that stoma reps comealong and help with our costs. People like to see stoma reps andstoma nurses at our meetings. It gives them the opportunity to seeand discuss the latest products and chat with the professionalsabout everything ‘stoma’!

The feedback below should give you an idea about what happensat our meetings:

“I think the success of your support group is theinformality. It is a safe and relaxed atmospherefor people with a stoma to meet others whohave lived the same or similar experiences andthere is no pressure for anyone to discuss stomarelated issues if they don’t want to.”

“I think the variety of speakers you have isbrilliant and keeps the meetings short andinteresting.”

“It’s good to chat about things such as travellingor exercises.”

“Pat’s homemade baking is always good with acup of tea or coffee.”

My contact details:janice234ford@gmail.com or 07923 975 051

Mid Devon Ostomy Support Group

News from Local Support groups

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 peoplewho have a stoma and visit theColostomy UK, IA and UrostomyAssociation stands.Colostomy UK volunteers, who all havestomas 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 thetime of going to press are listed below. Anup to date list, including events in yourarea, can be viewed on the Colostomy UKwebsite.

Coloplast EventThe Moat House, Lower Penkridge Road,Acton Trussell, ST17 0RJ6 July 2018 10:00am–12:30pmTerry Anne Horncastle: 07770 494 727 orgbtah@coloplast.com or Julie Turner:07469 144 186 or gbjtu@coloplast.com

ConvaTec eventTiffey Room Wymondham, WymondhamCentral Hall Back Lane, Wymondham,NR18 0QB6 July 2018 01:30pm–03:30pm0800 83 48 22stoma.webcare@convatec.com

ConvaTec eventHallmark Hotel, Preston Leyland, PR25 4JX11 July 2018 2–4pm

ConvaTec eventRochdale Community Event,Mercure Manchester, Norton Grange,OL11 2XZ12 July 2018 2-4 PM

ConvaTec eventMecure Tunbridge Wells Hotel,8 Tonbridge Road, Pembury,Tunbridge Wells, TN2 4QL14 July 2018 02:00pm – 04:00pm0800 83 48 22stoma.webcare@convatec.com

Coloplast EventHouse for an Art Lover, Bellahouston Park,10 Dumbreck Road, Glasgow, G41 5BW14 July 2018 12:00pm-3:00pmRebecca: 07810 057 682 orgbrpr@coloplast.com

ConvaTec eventCumbria Community Event,Washington Central Hotel,Cumbria, CA14 3AY25 July 2018 2pm–4pm

West Suffolk Hospital Ostomy Open DayRed Room at Tattersalls, Newmarket,Suffolk, CB8 2AY20 September 2018 10:30am – 3:00pmKatie Lloyd & Ann HubbleT: 01284 712 872

Stoma Care Open Days

National SupportOrganisationsSupport organisations for peoplewith stomas and other boweland bladder diversions

IA The Ileostomy and Internal PouchSupport Groupwww.iasupport.orgTelephone 0800 0184 724e–mail info@iasupport.org

UA Urostomy Associationwww.urostomyassociation.org.ukTelephone 01386 430 140e–mailsecretary@urostomyassociation.org.uk

Mitrofanoff Supportwww.mitrofanoffsupport.org.ukTelephone 01202 674336e–mail info@mitrofanoffsupport.org.uk

IOA International Ostomy Associationwww.ostomyinternational.org

Junior Ostomy Support Helpline (JOSH)via the Colostomy UK 24–hour freehelpline 0800 328 4257e–mail info@ColostomyUK.org

Breakaway Foundationwww.breakawayfoundation.org.ukTelephone 01283 240253 e–mail info@breakawayfoundation.org.uk

Support Organisations forassociated medical conditions

Beating Bowel Cancer UKwww.beatingbowelcancer.orgTelephone 020 8973 0000

Bowel Cancer UKwww.bowelcanceruk.org.ukTelephone 020 7940 1760e–mail admin@bowelcanceruk.org.uk

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 info@crohnsandcolitis.org.uk

The IBS Networkwww.theibsnetwork.orgTelephone 0114 272 3253e–mail info@theibsnetwork.org

S U P PO R T

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Channel IslandsChannel Islands

Guernsey OstomatesLuci Deane 01481 236 077 /lucideane58@gmail.comJersey Ostomy SocietyFiona Le Ber: 01534 445 076 orjerseyostomysociety@gmail.com

EnglandBedfordshire

Saturday Social ClubKaren Richards: 01234 792 278

BerkshireE.B.O.C (East Berkshire Ostomy Club)Jackie Dudley: 01344 426 652Reading Bowel Cancer Support GroupTed Wingrove 0118 961 8297 or 07974790 558

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

BuckinghamshireHigh Wycombe Stoma Support GroupJan Peacock telephone 0800 318965,e-mail peaky461@gmail.comMilton Keynes Stoma AssociationThia Cooper 01908 679 295 /mksa.chair@gmail.comYou Are Not Alone Stoma SupportGroupCarla 07846 354 918 e-mail:carla_wright@sky.com

CambridgeshirePeterborough Stoma Support Group -OstomisticsAlan Wright 01354 653 290 / 07836661 102 http://www.ostomistics.org/

CheshireCountess of Chester Hospital StomaSupport GroupStoma Nurses 01244 366 170East Cheshire Stoma Support GroupCatherine McIntosh: 01477 535 071Stockport Support GroupMarion Caulfield: 0161 320 9400 /0800 652 6667Warrington Ostomy Support GroupJane Shaw: 01925 662 103

ClevelandOops GroupJulie Morrisroe/Carol Younger/AlisonHall-O’Donnel: 01287 284 113

Cornwall Cornwall & Plymouth Bowel CancerSupport GroupThe Chairperson: 01726 828 419 or TheSecretary: 01872 241 145,cbcsginfo@gmail.com or websitewww.cornwall-bowel-cancer-support-group.co.ukCornwall Ostomy SupportKen Jones: 01872 863 106 orwww.cornwallostomysupport.org.ukLanhydrock Ostomist GroupMandy Rowe: 01726 832 642E: murphy.rowe781@btopenworld.com;Henry Kendall: 01208 850 986E: h.kendall380@btinternet.com

County DurhamBishop Auckland Stoma Care Group01388 814 535 or email-pgill82171@aol.comDarlington Support GroupSister Jacqui Atkinson: 01325 743005Durham Stoma Support GroupSister Maxine Santana -0191 333 2184

CumbriaGrange Cancer Support Drop inMarie O’Connor 015395 33279Stoma Support Groups in NorthCumbriaStoma Care Nurses 01228 814 179

DerbyshireDiverted Local Stoma Support GroupDiana Manning: 01283 541 311

Devon Devon IAMartin Hornby: 01458 251 095 oremail: devon@iasupport.orgMid Devon Ostomy Support GroupJanice - janice234ford@gmail.comPlymouth & District Bowel CancerSupport GroupWendy Wilson or Keith Anderson:07934 922 156 Facebook: PlymouthBowel Cancer

DorsetColostomy Urostomy Pouch Ileostomyof Dorset - CUPID (Bournemouth)Beryl Andrews 01202 483 303Colostomy Urostomy Pouch Ileostomyof Dorset - CUPID (Poole)Jenny Pipe: 01202 740 440Colostomy, Urostomy, Pouch &Ileostomy of Dorset - CUPID (WestDorset)Colin Clare - 01305 853 238

EssexConnectLin Hart 01279 505 273 email:comeconnectwithus@gmail.comMid Essex Stoma Support GroupPaul Foulger: 01245 224 374N.E.S.S (North Essex Stoma Support)Brian Waller- 01206 540 449Optimistic OstomatesAngela Taylor 01702 385510Redbridge Ostomists ClubStoma Nurses - Chris/Lisa: 020 89708321STEPS - Stoma Essex Patients Support01268 451 937 or email-stepsessex@gmail.com

GloucestershireVale Stoma Support Groupjfn.dursley@gmail.com or text 07941827 393

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

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HampshireReplummed stoma support groupwww.replummed.meSolent Ostomates Support Group(S.O.S.)Sally - 07527 707 069Southern Ostomy GroupCaroline or Karen on: 07756 819 291southernostomygroup@hotmail.comWaterside Stoma Support GroupHazel Derham: 02380 891 934 orhayjuder@sky.comWessex Urology Support GroupAdrian Kuczynzki: 07910 786 978

HerefordshireHerefordshire Stoma Support GroupCarol Steele 01432 880 656 or email:carolsteeleglo@gmail.com

HertfordshireColoniseAnastasia 01727 760 981Stevenage OstomisticsJudy Colston: 01438 354 018 /neilcolston@btinternet.com

Isle of ManIOM Bowel Cancer Patient and CarerGroupHeather Norman: 07624 480 973Stoma Support GroupCarole Cringle stoma nurse: 01624 650212

Isle of WightOptimisticsCNS’s Sarah Capon & Sarah Varma01983 534 009Semi-Colon ClubTony Crowson on 01983 559 326 orCancer Clinical Nurse 01983 534 180

KentAshford Stoma Support GroupCarole Hobbs: 01303 814 014 orMargaret Webb 01233 628 807Atoms Support GroupMaria Culleton, SCN: 01227 769 679 or07827 997 424Dartford Ostomy Group Support(DOGS)“Tracey, John or Sue: 07948 974 350 ordogs-uk@hotmail.com”Dover Stoma Friends Group SupportJulie Bell/Ros Marshall:01233 616 646and Support Group Organiser JuneGolding:01304 822 696M.O.G.S (Medway Ostomy GroupSupport)Helen Or Tracey: 07773 605 534Maidstone Stoma Support GroupJudy/Kirsty: 01622 224 305Sheppey Ostomy Group Support(SOGS)Shelley 07714 734 194 / sogs-uk@hotmail.comSWANS Stoma Support GroupHeather - 07711 445 312Thanet Stoma Buddies Support GroupKathy 01843 291825Tunbridge Wells Stoma Support GroupCathy Chitty/Mags Donovan 01892 632323

LancashireKangaroo Klub, Blackpool stomasupport groupFor further details please contact thestoma department at BlackpoolTeaching hospitals, Tel: 01253 956620or e-mail crc-stomanurses@bfwhospitals.nhs.ukNorth Manchester and Bury StomaSupport GroupJulie Meadows (SCN) 0161 720 2815 or07774 263 563Oldham Stoma SupportJune Wilde: 0161 312 5538Phoenix Bowel Cancer Support GroupSandra Peet: 01772 683 790,www.phoenixgroupbvh.com or eMail:sandrapeet7@aol.com

LeicestershireKirby Ostomy Support Group.Colostomy, Ileostomy and Urostomy inLeicestershireJanet Cooper: 0116 239 2844 /kosg2013@btinternet.com

LincolnshireFriends East Coast Support GroupBetty Williams - 01205 724 120, Sheila- 01205 364 493Grantham Support GroupBobbie/Rachel: 01476 464 822

LondonBowel & other Cancer SupportNewham020 8553 5366 scyana@tiscali.co.ukHomerton Hospital Bowel & StomaSupport GroupAngela Davy: 0208 510 5318 or 0208510 7599Rectangle - Colorectal Cancer SupportGroupRegina Raymond 0207 472 6299South Woodford Support GroupNurse Christina and Lisa: 0208 5356563Surrey & South London Bowel CancerSupport GroupSue Berry: 01737 553 134 or JohnAmos: 0208 668 0796

MerseysideI.C.U.P.SSue: 07742 237 013St Helens Cancer Support Group01744 21831, Denys Floyd- 01744884097 or email:contact@sthelenscancersupportgroup.org

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

NorfolkJames Pagett Ostomy Support Group(Afternoon Meeting)Vicki Blackwell on 01493 663 363James Pagett Ostomy Support Group(Evening Meeting)Sandra Hutchings: 0150 258 5955Kings Lynn Ostomy Friendship SupportGroupFor more info please call 01553 775698 / 01553 674 962 / 01553 768 271

Norfolk OstomatesBarbara Harris 01603 417046 07789581312 “”Norfolk Ostomates”“Facebook group”STARS (SToma And ReconstructiveSurgery social support group )Sylvia Hughes 01263 733448sylvia.ruth.hughes@gmail.com

NorthamptonshireNorthampton Ostomy Support Group07801 316 403 (evenings) or Trish07703 188 386

NorthumberlandBerwick Ostomy Support GroupBobbie Minshull: 07714 479 320Hexham Ostomy GroupJudith on 07967 927 286Northumberland Cancer Supportmembers@northumberlandcancersupportgroup.co.uk

NottinghamshireNorth Notts Stoma Support GroupTore and Nicky Norman: 0177 3715460Nottingham QMC Stoma SupportGroupRosemary Brierley: 0115 982 6691Nottingham Stoma SupportJenny or Kate: 0115 962 7736/ Mrs BHeath: 0115 966 3073

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

StaffordshireOutlookMoira Hammond 07788 402 195

SuffolkEast Suffolk Ostomy GroupMarion Fisher: 01473 311 204L.O.G.S (Lowestoft Ostomy GroupSocial)Mandy O’Shea: 07899 913 617 orBruce Pollard: brucepollard@me.comWest Suffolk & District Stoma GroupJessica Pitt stoma nurse: 0163 8515525

SurreyEpsom and District Stoma SupportGroupLindsay, Trevor or Sheena: 01372 735925Normandy Colostomy Support GroupMarina Harkins: 01483 233 126 or07852 554 049 or Jackie Sanders:jackie-sanders@hotmail.co.uk or 07815603 742. Website:www.normandystomagroup.wordpress.comStoma Support GroupRobin Young: 01428 723 255

SussexBrighton & District Support afterStomas (SAS)Sylvia Bottomley: 01273 554 407Chichester Stoma support GroupThe Stoma Care Team 01243 831 527The Ostomy Friends GroupJane Quigley: 01323 417 400 ext 4552West Sussex Princess Royal StomaSupportTina Walker: 01444 441 881 ext 8318

5 2 | T I D I N G S 5 0 | S U MM E R 2 018 W E B S I T E : WWW. CO LO S TOMYU K . O R G

S U P PO R T

Tyne and WearGateshead Stoma Patient and CarerSupport GroupStoma Care Nurses: 0191 445 3152 oremail stuart.sutcliffe81@yahoo.comNHS Molineaux CentreJohn Burchell 0191 265 1047Royal Victoria Infirmary Support GroupJohn Burchell 0191 265 1047

WarwickshireWarwickshire Stoma Support Groupnuneatonstoma@aol.com or Bob:07564 680 803

West MidlandsCoventry Stoma SupportMartin - 07947 385 643

WiltshireSwindon IAwww.swindon-ia.org.ukWessex Stoma Support GroupMichael Slater:wessex.stoma@yahoo.co.uk or on01722 741 233 www.wessex-stoma.co.uk

WorcestershireKidderminster & District CollossusSupport GroupBrendon Drew: 01299 400 843

YorkshireAcorn Ostomy Support Group07580 693 155 (After 6-00pm)Airedale Stoma SupportSue Hall: 01535 646 373Barnsley Bottoms Up Stoma SupportGroupStoma Nurses 01226 4325 28 or CeliaUtley (Chairman) 01226 284 262Behind You (Calderdale & HuddersfieldBowel Cancer Support Group)Stoma Care Nurses: 01484 355 062Bottoms Up (for urology and colorectalcancer patients)John Whelpton 0797 4657146Dewsbury & District OstomyJanet Edmond: 01924 512 041 or01924 512 072Hambleton and Richmondshire OstomySupport GroupStoma Care Nurses - Judith Smith andMary Hugil 01609 764 620 / 07736295 131Harrogate Stoma Support groupJacquie- 07768 024 356Leeds 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: 07989 565 335 or PeteRennard: 07939 518 642 / 01482 793966 or Rosanna Grimsby: 01482 801575. www.hercosg.org.uk

Northern IrelandCounty Antrim

Colostomy UK Volunteers NorthernIrelandChris Wright: 07720 717 771Mater HospitalKaren Boyd - Stoma Nurse: 028 90741211 Ext 2329Royal Victoria Hospital - BelfastSarah Haughey/Audrey Steele: 0289024 0503 Ext 3483

County ArmaghCraigavon Area HospitalClare Young/Lynn Berry/Janice Garvie028 3861 2721Daisy Hill Hospital Support GroupBernie Trainor: 028 3083 5000 Ext2222

County DownNorth Down Stoma Support GroupAdrian Ewing on 07850 741 511Ulster HospitalHazel/Martina: 028 9055 0498

LondonderryCauseway Support GroupMary Kane: 028 7034 6264

ScotlandAyrshire

Ayrshire & Arran Stoma Support GroupJim Krasewitz: 01292 220 945Stoma Care And Recovery (SCAR)Maggie: 01294 271 060/ 0781 7736147 maggie13@sky.com or Rhona:01294 557 478

FifeFife Ostomy Support GroupIshbel Barr: 01592 772 200

LanarkshireGlasgow Stoma Support group-Morag Sinclair 0141 779 1322 orJackie McChesney 01505 324 052

MorayMoray Ostomates Support GroupMeggie 01343 552 449 / Kathleen07789 684 285

Scottish BordersStoma Support GroupNancy Fraser: nancyfraser@talktalk.netor 01450 374 012. Fiona Gentleman:r.gentleman@sky.com or 01450 371063

West LothianBring Your Own Bag Stoma SupportGroupWestern General Stoma Team 0131 5371000GOSH (West Lothian)Scott Pattison: 07502 163 644

WalesBridgend

Bridgend Ostomy Patients SupportGroupAnita Brankley (Secretary) 01656 645602 or bridgend.ostomy@gmail.com

CarmarthenshireW.O.W.S. Wales Ostomy West SupportJudi Hopkins 01267 237847 or JulianBoswell 01554 772877

ConwyNorth Wales Ostomy Support GroupHazel - 07976 817 246 or Lesley -07828 837 325

FlintshireBag For Life Stoma Support GroupIn.It.TogetherFaye Jones 07852 750 772

GwentBlaenau Gwent Self HelpCelia McKelvie: 01873 852 672 After6pmCwmbran Ostomy Support Group(COSG)Philippa Lewis: 01633 791 339 / 07504713 069

Mid GlamorganC.A.S.S Colorectal and Stoma SuportGroupColorectal Nurse Team on 01685 728205

PembrokeshirePSA (Pembrokeshire StomaAssociation)Roy Whitfield 01437 760 701

PowysThe Bracken Trust Cancer SupportCentreHelen Davies: 01597 823646

Rhondda Cynon TafRoyal Glamorgan Stoma Care SupportGroupDomenica Lear 01443 443 053

SwanseaSwansea Ostomy Self Help GroupGlynis Jenkins: 01792 418 245

Republic of IrelandCounty Mayo

Mayo Stoma SupportMarion Martyn: +353 (0)949 021 733

DublinBowel Cancer Support Group (ICS)DublinNational Cancer Helpline: +353 1 800200 700 or Olwyn Ryan: +353 1 2310500

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Supporting and empowering you

E: info@ColostomyUK.org | W: www.ColostomyUK.org

Contact usFreephone helpline:

0800 328 4257

We are Colostomy UK.

Here to support you:� 24–hour free helpline: 0800 328 4257.� Information booklets, leaflets and factsheets.� Tidings our flagship support magazine.� A closed Facebook support group for ostomates to

support each other and exchange hints and tips.� A website packed full of useful information

Here to empower you:� Campaigning to raise awareness and bring about

positive, tangible changes for people living withstomas.

� Running Projects to help ostomates reach theirpotential.

� Acting as advocates. We are your voice on thebigger issues.