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T I D I N G S | W I N T E R 2 0 1 2 | 3

welcome to WINTER

Happy New Year andwelcome to the winterissue of Tidings...

As another year begins it’s easy tofocus on what’s ahead as the pastyear fades but before we all getexcited about what’s noted on ourcalendars and on mine it’s theOlympics! I would like to take a lookback at 2011.

The last four issues of Tidings havebeen incredible, packed with stories,education articles, hints and tips,product information, practical adviceand with YOUR help...OK! Let’s juststop right there shall we, who do Imean? Well, that’s easy YOU of course– Tidings readers – for without YOURletters, emails, stories, fundraisingefforts, educational articles, productinformation...Tidings simply wouldn’thave the same appeal! When I say –Tidings readers – whom do I mean?Well, the list is growing but in essenceits...colostomates, their families livinghere in the UK or in sunnier climesabroad, those involved in stoma care– clinical nurse specialists – aroundthe UK and overseas, new patients,surgeons, GPs, stoma care productmanufacturers and suppliers, carers,support groups, pharmacists andmore! Tidings readership continues toexpand, long may it continue, as itraises awareness for the work of theColostomy Association.

During 2011 I have had the privilegeto attend several healthcare/stoma

care related conferences and CAvolunteer training events as Editor ofTidings and the enthusiasm andappreciation of Tidings has brought atear to my eye on several occasionsbut I must stress it is a Team effortwhich includes you! I cannot impresson you enough how well Tidings isreceived by healthcare professionalsand in particular stoma care nurseswho regularly give Tidings to theirpatients – a BIG thank you to them!

Over the past year Tidings hascontinued to clarify, inform andsupport ostomates ‘living with acolostomy’. It’s the Editors tasktogether with the Editorial team, tokeep the colostomate in our ‘mind’ seye’, to deliver support, reassuranceand provide practical advice within thepages of the magazine, as well asexamine the negatives and report onthe positives so that when Tidingsdrops through the letterbox it brings aplethora of information relevant tocolostomates, their families and carers.

I would like to take this opportunity tothank EVERYONE for their fantasticcontributions and if there is anyoneamongst you toying with the idea ofwriting something for Tidings pleasedon’t hold back, be brave, you neverknow your story or article could helpsomeone!

I would also like to thank my Editorialteam for their on going support and inparticular Associate-Editor RosemaryBrierley who keeps me focussed andkeeps a beady eye on the detail. Theteams passion, ideas, observationsand articles shine out from the pagesof Tidings. A sad farewell to teammember Gill Herbert who with eyesand ears peeled on behalf ofcolostomates contributed much toTidings. A warm welcome to newteam member Duncan Wells – I’msure many of you will enjoy hiscontributions and warm welcomeback to Jo McKenzie long time CAoffice administrator.

I would also like to send out severalBIG messages of thanks andappreciation...to our Dear Nurse...JulieRust – thank you! Julie always makestime to answer your medical queriesin Tidings even though she isexceptionally busy.

A big THANK YOU to the advertiserswho without their continued support,Tidings magazine in its current formwould not be possible! And last butdefinitely not least, kind thanks go tothe unsung heroes who continue toensure the highest quality ofproduction and print that thispublication truly deserves!

Tidings magazine extends a warmhand to YOU and to everyone ininvolved in stoma care and to theostomy community in its widest sense.Tidings is proud to provide adiscussion platform that reflects andconsiders aspects surrounding theostomate and stoma care.

I usually finish by giving a run downon the contents of Tidings but thistime I’m going leave you in peace tofind out for yourselves! Happy reading!

On behalf of the Editorial teamenjoy this issue of Tidings. Iencourage YOU to get involved withTidings...YOU make it what itis...YOUR Magazine!

Email:editor@colostomyassociation.org.uk

PS.If you would like to get in touchwith the Colostomy Association orTidings please take a look at Page 6.

F R O M T H E E D I T O R

4 | T I D I N G S | W I N T E R 2 0 1 2

3

all your regulars

WelcomeFrom the Editor

How to get in touch...

About the...Colostomy AssociationEditorial TeamEditorial submissionsAdvertising informationPublication Dates

CA News

President’s MessageChairman’s MessageFrom the office

Fundraising

Your donations... stories and fundraisers

Notebook

Updates and events

Connections

Marketplace...advertiseyour events • messages •services here...

Donations

Donation form...help us to make a difference!

6

8

11

50

52

inside..........

storycover

Reaching out...Northern Irelandfeatured on page 56

53Cover picture © Edward Byrne Photography

T I D I N G S | W I N T E R 2 0 1 2 | 5

update...Taking a look atthe latest stomacare products &servicesKeep up-to-date withthe latest informationabout stoma careproducts and services

16

...this issuereal lives...

Mary’s Story...What Mary did next...

Pathways to a ColostomyFaye takes uson her journey

Young OstomatesBreakaway...buddies!

Betty’s StoryBetty takes uson her journey

18

& special features

health...DietAbout Constipation

Irrigation and YouLucy Russell CNS/SCN

Are you sufferingin silence?Parastomal Hernia Research

Dear NurseYour letters and queries

22

travel...

Don’t forgetyour travelcertificatethis winter...Contact CA office on 0118 939 1537to get yours today

support...Patient IeafletsCA launches two NEWpatient support leaflets

Reaching outOpen Day successWeetwood Hall, Leeds

Northern IrelandVolunteersGiving back...

Support grouplistings

14

interest...DisposalReaders’ replies

Disabledlavatories

ChatbackReaders’ writes

32

24

40

48

29

46

44 36

30

4256

58

6 | T I D I N G S | W I N T E R 2 0 1 2

EDITORIAL TEAM

Editor Jane Wood

Associate EditorColostomate & Helpline Volunteer Rosemary Brierley

Executive TrusteeColostomate & Helpline Volunteer Sue Hatton

Trustee Colostomate & Helpline Volunteer Jackie Dudley

Trustee Colostomate & Helpline Volunteer Duncan Wells

Office Administrator Jo McKenzie

Colostomate & Helpline VolunteerGeorgina Williams

Stoma Care Nurse AdvisorAmanda Gunning RGN, CNS

Tidings is YOUR Magazine...Editorial Submissions:Tidings is a quarterly publication. Yourcontributions to Tidings are alwayswelcome. If you have a story, article orletter that you would like featured inthe magazine we would like to hearfrom YOU!

If you have an idea for an article andwould like to discuss this with theEditor or would like help writing yourstory please get in touch. We willalways do our best to include yourcontributions in the next issue ofTidings or will hold them back for afuture issue. When submitting yourinformation don’t forget to supply yourname, address, phone number and e-mail address if you have one.

Please include any relevant photos orillustrations as these really help tobring YOUR magazine to life! You cansend these as prints or digital images.

Feedback...We are always trying toimprove your Magazine and welcomeyour feedback. Enjoy this edition ofTidings we look forward to bringingyou the next edition...

How to supply digital images:When supplying digital images forinclusion in Tidings please try toobserve some or all of the followingcriteria:-

• Images should be in RGB mode

• Images should not be less than1500 pixels x 1200 pixels at 300pixels per inch (equal to 12.5cm x10cm).

• File sizes not less than 10Mbytesuncompressed

• Images in Tiff with LZWcompression or JPEG format.

• For scanned images please set at300 ppi in RGB mode and scanoriginal @100%.

Advertising Enquiries:For a media pack and advertising rates. Contact Jane Wood: 0118 983 6226

Publication:Spring April 2012Summer July 2012Autumn October 2012Winter January 2013

About...the Colostomy AssociationThe Association represents the interestsof colostomates and other ostomates.We provide support, reassurance andpractical information to anyone who hasor is about to have a Colostomy.

How to become a memberof the Colostomy Association...

Simply contact us by post: Colostomy Association2 London Court, East Street, Reading RG1 4QL

By telephone: General Enquires: 0118 939 1537

Stoma care queries only:Freephone Helpline: 0800 328 4257

By E-mail: cass@colostomyassociation.org.uk

Find us on Facebook:

Simply visit our website and register at:www.colostomyassociation.org.uk

How to get in touch...with the Colostomy Association and Tidings...

How to contact the Editor By letter write to:

The EditorColostomy Association2 London Court East Street Reading Berkshire RG1 4QL

By telephone via CA Office:0118 939 1537

or e-mail the editor direct: editor@colostomyassociation.org.uk

or e-mail: cass@colostomyassociation.org.uk

Tidings Magazine: The views expressed by the contributors are notnecessarily those of the Colostomy Association.Great care has been taken to ensure accuracy, but the Colostomy Association cannot acceptresponsibility for errors or omissions.

Disclaimer: The display, description or demonstration ofproducts and services or the inclusion ofadvertisements, inserts and samples withinTidings Magazine does not constitute anendorsement or recommendation of theseproducts and services by the Colostomy Association.

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

Don’t delay...Donate Online today!There are NOW two ways todonate online...

1

Visit the CA website and simplyclick on the donate panel on thehome page.

Visit the Just Giving home pageyou will see a search panel ‘Find aCharity’ type in ColostomyAssociation.

2

B. Braun Medical Ltd l OPM l Thorncliffe Park l Sheffield l S35 2PW

Tel. (0114) 225 9000 l Fax (0114) 225 9111 l www.bbraun.co.ukXX-SKCA4T-11-11

For a free sample, simply fill in the form below and return using the FREEPOST address or freephone: 0800 163 007

Please send me a sample of:

Convex Flat

Closed

Stoma size mm

Name:

Hospital Name:

Address:

Postcode:

Telephone:

Email:

B. Braun Medical Ltd · FREEPOST SF10771 · Sheffield · S35 2FZXX-SKCA4T-11-11

Softima® Key - The world’s first truly guided two piece ostomy system is now

available with convexity.

Convexity with comfort - Gentle, smooth and comfortable convex to fit closely

for extra security with minimum pressure.

Secure and simple - The “key, guide and lock” system ensures precise, secure and

easy connection every time.

Gently does it!

Softima® Key Convex

Now OnPrescription

8 | T I D I N G S | W I N T E R 2 0 1 2

Messagefrom ourPresident... We all enjoyed anotherstimulating and exciting open day- this year held in Leeds. Withoutstraying into the field of politics, Icould not help feeling impressedthat we were indeed creating ourown colostomy “big society”.

The willingness of colostomists to learn and to help each other is, through the medium of ourAssociation, very special.I hope for better lives and greaterenjoyment for the increasingnumber of survivors from bettercancer surgery in the future.

I continue to visit and operate inmany countries throughout theworld. Visits this year haveincluded South Africa, Brazil,Australia, Germany, France, Italyand once again to Russia andHungary. Indeed the list neverseems to stop. I am however,increasingly convinced that better

lives for colostomists dependsupon organisations such as ourown, and indeed upon thewillingness of our members tocome forward and support thevarious initiatives that theAssociation puts forward.

I hope I can be forgiven forrepeating my enthusiasm forseeing that every colostomist ismade aware of the potentialadvantages of the irrigationmanagement method for his orher stoma. We are in the NewYear, about to start production ona friendly, watchable and practicalDVD that we hope everycolostomist in the country will beable to see for themselves. We arealso working hard on plans toaccommodate the teaching of‘irrigation’ to those who wish to learn for themselves.

During last year I haveapproached the Association ofColoproctology of Great Britainand Ireland with a request to helpus identify units around thecountry that will promise to take aspecial interest in the revision andimprovement of anyone whosecolostomy is less than optimal,and can be made better bysurgical revision. This is a highlyspecialised aspect of surgicaltraining, and requires particularlyfastidious and careful surgeonswith a special interest in thepracticalities of stomamanagement.

This year parastomal hernia hasbeen a regular topic in thecolorectal surgical meetings

around the world and surgeonsare becoming increasingly awareof how common it really is. Ourmembers may need to bereminded that they do not have to put up with less than optimalstomas and that the NationalHealth Service is committed toseeing these revised appropriately,if it should become necessary.

Our new Vice Present, Mr IanDaniels FRCS of the PeninsularMedical School in Exeter, hasalready expressed his willingnessto help. He is an establishedinternational expert in the repairof all forms of incisional andstomal hernias and the unit thathe is building up in Exeter is aperfect example of what we hopeto be able to replicate in variousparts of the country. I am hopefulfor real progress during thecoming year.

Finally, I think we all need toexpress our Christmas goodwishes and thanks to the peoplewho work in the ColostomyAssociation office and whocommit themselves to therunning of the Association inmany different ways. Tidings is amarvellous magazine, and I lookforward to seeing what you haveto contribute to it during 2012.

Seasons greetings and a veryHappy New Year to everyone!

Professor Bill Heald OBEPresident Colostomy Association

F R O M T H E P R E S I D E N T A N D C H A I R M A N

T I D I N G S | W I N T E R 2 0 1 2 | 9

Messagefrom ourChairman... This past year has, in many ways,been very exciting for theColostomy Association and 2012promises to be even more so. At the end of 2010 the Trusteesdecided that our main priority forthe forthcoming year would be topay more attention to volunteersand prospective volunteers andwith that in mind a small team setabout the task of arranging two“volunteer weekends away” thefirst in Chester and the second inHuntingdon. Both events werevery kindly sponsored one byConvaTec and one by Dansac.

The reasoning behind these two“volunteer weekends away” wasto reaffirm the ColostomyAssociation’s relationship withestablished volunteers and bringtogether prospective volunteers.We felt it important to invitepartners as well as the volunteersthemselves as, on many occasions,it is a “team effort” between thetwo of them.

There were presentations andmuch discussion on varioussubjects – Trustees were able tointeract with volunteers andexplore their main interests andskill sets to ensure volunteersmatched the present and futurestrategic requirements of theColostomy Association goingforward.

The second stage of the processwas to train the volunteers andthis part of the programmeunfortunately came to a halt asBob Buckley our training teamleader was taken ill. Sadly Bobdied at the end of November butthe Trustees felt, as a tribute to hisuntiring efforts, that he wouldhave wanted the trainingscheduled for December to goahead. On 13th and 14th ofDecember 18 volunteers bookedinto the Premier Inn, Reading.The course was dedicated to Bob’smemory. I and my other Trusteesshall be eternally grateful to himfor his untiring efforts to make ourtraining programmes a success.He will be an extremely difficultact to follow.

However, Mary Thomas, SueHatton, Duncan Wells, Jane Woodtogether with Gill Herbert and JoMcKenzie (our head officeadministrators) worked very hardindeed to ensure that the twocourses – Volunteer Induction andVolunteer Helpline Training wentas smoothly as possible.

Northern Ireland has not beenwell supported in the past but thestoma nurses at the BelfastHospitals together with twoextremely keen prospective

volunteers asked if the ColostomyAssociation would help them toset up a CA volunteer group inNorthern Ireland. Two of ourTrustees flew to Northern Irelandand attended an Open Day withprospective CA volunteer ChrisWright. The day was very wellattended and colostomy supportin Northern Ireland is now areality.

The forthcoming year will nowgive us the opportunity to put allthis hard work into effect byensuring that the ColostomyAssociation is represented at most stoma events taking placethroughout the UK.

May I take this opportunity tothank all the manufacturers andsuppliers for all the support andsponsorship we have receivedthroughout this year withoutwhom we would be unable toprovide colostomists with the helpthey need and deserve.

Seasons greeting to you all andBest Wishes for 2012

Monty TaylorChairman of Trustees

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C A N E W S

Greetings from everyone at the CA office...

On behalf of the office we hope youhad a great Christmas and would liketo wish everyone a Happy New Year!

The office in Reading continues to bea hub of activity...answering callersqueries and reassuring them withadvice, support and an answer to theirproblems. Dealing with e-mails andrequests for literature from newcolostomates, carers and stoma carenurses.

Open Day...As some of you may knowwe had another very successful OpenDay at Weetwood Hall, Leeds lastOctober. We would like to thankeveryone who attended for making itsuch a success and to say thank youto all those who helped on the day.

Several people have expressed aninterest to attend a future CA open dayevent. If you would like to attend pleaseregister your interest by emailing JoMcKenzie at CA head office, details canbe found on page 6. Due to venueconstraints the cut off for attendeenumbers will be approx. 200. Details ofthis year’s event will be confirmed viaour website or in the Spring Issue ofTidings published in April.

Moving on...It is with regret that wesay farewell to Gill Herbert CA headoffice administrator who left us lastNovember. Gill worked hard for theAssociation and showed realenthusiasm and drive to get thingsdone on behalf of all the manyostomates that require our help andsupport. Gill came to the Association,six years ago, when it was the BritishColostomy Association. It was not longafter that we learnt that we were tolose the backing of Macmillan Cancerand that the BCA would cease toexist. When the decision was made toform the new Colostomy Association,in 2005, it was all “hands to thepumps” with new Trustees and themost willing office staff of Gill, Jo andBeryl. Gill worked tirelessly to ensurethe continuation of the Association,she will be greatly missed.

Volunteers are needed...for Open daysas there are more each year. Feedbackfrom volunteers about open days letsJo (who organises the diary) knowwhat areas need more support, sokeep in contact.

Tidings continues to keep us busy!Articles that appear in the magazinealways raise many questions withreaders wanting to know more. It is so rewarding to receive callscongratulating everyone on thecontent of Tidings.

We still find callers that have notheard of adhesive removers – so aquick call to manufacturers andsamples are sent out to themimmediately. A call to the office isalmost always followed up by thewords…if only I had known about theCA before…

Organising the helpline rota is quite a task and requires peace and quiet tosort it all out. Volunteers confirm thedays they can take calls and Jo thensorts the rota into a coherentstructure. Well done Jo!

Our Facebook group is growing fast,we now have over 400 members sowhy not join. It’s simple and there’sno cost involved. You will receive avery warm welcome from thosealready on board!

A BIG thank you to the volunteerswho covered the Helpline over theChristmas period, without yoursupport the CA would not be able tooffer this invaluable service.

Well until the next time we report have a great New Year!

Warm regards,

Richard and Joand office volunteers Margaret and Colin

Bob Buckley CA Volunteer andVolunteer trainer passed awaylast November. Bob was such a special person – through hisvoluntary work with theColostomy Association hetouched people’s lives andhelped change perceptions of‘living with a colostomy’.

A positive person, Bob waskind and understanding with alittle humour attached and a sparkling smile. He lovedrunning and fishing and was avery proud family man. He hadmany special skills which madehim an excellent CA volunteerand trainer.

Bob was always available totalk to ostomates that calledour Helpline – he was anadvocate of irrigation. Nevertoo busy to stop what he wasdoing, Bob would talk to,advise and encourage thosewho were just beginning tolearn how to live with theircolostomies.

The greatest tribute to Bob willbe the CA volunteer trainingprogramme which is nowdedicated to his memory. Hewas an inspiration – and let’shope that via this programmehe will continue to inspirevolunteers of the present andfuture!

He will be greatly missed byeveryone that knew him.

A huge loss to the ColostomyAssociation...

T I D I N G S | W I N T E R 2 0 1 2 | 1 1

F U N D R A I S I N G W E N E E D Y O U R H E L P

We need YOU!...Fundraising is an immenselyimportant source of income for the ColostomyAssociation...as we rely solely on donations tocontinue our work of giving support tocolostomates...

Donations

When sending your

donation/s please mark

your letter/cheque with

Tidings Issue 24....

Thank you!

Dear CA,Re: Collection Box...I celebrated my 80th birthday in thesummer and collected £30 with my CA donation box.

YoursP D

Dear Tidings,Marathon Effort!

My name’s Chris and I ran the ChesterMarathon last October and raised£162. This year I will have had mycolostomy for 27 years! I enjoy sport,especially running. I decided to runthe marathon to raise funds for CA, tolet people know that you can stillenjoy sports even with a colostomy!

Best regards, C D

Mini raffle raises £25...Kind thanksgo to J M

Dear Sir/Madam,Wedding Anniversarycelebrations....Please accept a donation of £150 onbehalf of Amanda Williams. Thecollection was taken at my daughter’s25th Wedding Anniversarycelebrations. (She was diagnosed withchronic Crohn’s at the age of 18). Your organisation so helpful over theyears - many thanks.

Kind RegardsG S

Dear CA,Bring n’ Buy for CA!We are a group of ladies calledWoodlands Park Adult School and wegive to various charities during theyear. I suggested at our next bring andbuy we give to you. I have had mycolostomy 9 years now, and I knowmoney is always needed. Pleaseaccept a donation of £82.65.

Yours sincerelyI W

Dear CA,Please accept a donation of £22.40.This donation is made up of the many20p’s that we collected by holdingand selling paperback books. The sumraised was over a period of time asyou can see we are a group that readsa great deal! £10 was donated by onemember...Gerry, who was thrilled toread the latest Tidings and found onpage 22 the answer to most, if not all,of his dietary problems!

Best wishes J

Celebrations all round...Charity Hog Roast raisesover £1000 for CA...

I shall always remember my 62ndbirthday, September 2007 as Icelebrated it in hospital, having beenaroused from an induced coma inintensive care. I had been rushed tohospital some two weeks earlier withwhat turned out to be a perforatedbowel, requiring serious emergencysurgery! A day or so before mybirthday, it was decided I was fitenough to come back to the world.

After a total of 10 weeks in hospital Iwas discharged, under supervision,and over the last four years I havelived a full and normal life – includinga new husband, but that’s anotherstory which I may tell on differentoccasion!

I thought, earlier this year, that Iwould like to give support to newcolostomates and become a CAvolunteer – I am delighted to say thatI have recently completed two CAVolunteer Training courses, which Ithoroughly enjoyed! >

Thank youeveryone

for your kinddonations

Seasons Greetings and Best Wishesfor 2012...

In Memory...Herbert Stott £200

Thank you

The Colostomy Association would like to say...A big THANK YOU to everyone who donated and raisedfunds on our behalf during 2011. We try to publish as manyletters as possible - to those of you not mentioned here...you are not forgotten - we would not be here without yourhelp - So, PLEASE keep up the GOOD WORK in 2012!

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F U N D R A I S I N G W E N E E D Y O U R H E L P

Registered Office: 2 London Court, East Street, Reading RG1 4QL Registered Charity No: 1113471

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:

Please pay: NatWest Bank Market Place Reading Branch 13 Market Place RG1 2EP

Account name: 500 Club Account No: 89252314 Sort code: 60-17-21

the sum of £24.00 amount in words: Twenty four pounds

Date of first payment: and thereafter on the same day every year until further notice

Name: (IN CAPITALS)

Signature: Date: / / 2012

#My Details:

Title: Name: Surname:

Address:

Postcode:

Telephone number: Email:

Important

Notice to ALL...

Please note: Change of bank account details for the 500 Club!

The 500 Club bank account details changed in June 2010. It has come toour attention that some standing orders have not been amended and arestill being paid into the old bank account. Unfortunately from 1st June 2011these payments will no longer be included in the draw.

Please check with your bank that they have amended your standing order totake into account the new details - many thanks. Because as they say...youhave to be in it to win it! If you have any queries about the changes,please contact the office on 0118 939 1537.

The new bank details are...Bank: NATWESTAccount number: 89252314Sort code: 60-17-21

About the 500 Club...We are pleased to announce the Colostomy Association ‘500 Club’ giving youthe chance to win cash prizes ranging from £25 to £1000. For the sum of £24per year, you will be entered into a quarterly draw for cash prizes of £500,£250, 3 x £100, 3 x £50 and 3 x £25. At the end of each year a further prize of£1000 will be awarded. Draws take place at the end of March, June,September and December and winners will be notified shortly thereafter.Membership is restricted to the first 500 applicants so don’t delay...

Simply complete and cut out the standing order mandate below and return itto: Colostomy Association, 2 London Court, East Street, Reading RG1 4QL as soon as possible.

Note: If, at the time of any draw, the club is not fully subscribed, the ColostomyAssociation reserves the right to distribute prizes in the proportion of thesubscriptions received.

500 CLUBMEMBERS

Apart from that, other than my annualdonation to the ColostomyAssociation and attendance at mylocal quarterly get together with thestoma care nurses, I have done littleto show my appreciation for the careand support I received. So, lastSummer I decided to hold a charityhog roast at home to raise funds forCA!

Fortunately my future son in law is abutcher with both the equipment andexperience needed to supply andcook the hog! My husband and I havea wide circle of friends, including thelocal Lions Club, scouts and formercolleagues. An email to our contactsresulted in over 80 people wishing toattend and those, who couldn’t bewith us offered to donate.

We were really lucky with the weatherand with the support of friends andfamily assisting with gazebos, cateringand serving everyone had a great day!A friend also sold raffle tickets and theend result was a donation of£1020.65 including Gift Aid for theColostomy Association!

Did I mention that all this took placeon my birthday? Most people gettaken out on their special day thiswas something very different. Phew!Ah! Well! All for a great cause...will itbe an annual event? We’ll just have towait and see?

Best WishesS P

Dear Tidings,Bowling for funds...

My husband is, this year’s President of the Crystal Bowling Club inStourbridge. The holder of the officenominates a charity of his choice tobe the recipient of funds generatedfrom their annual charity day. Hethought it appropriate to name theColostomy Association as this year’sbeneficiary. Although a nationalcharity, the Colostomy Association isnot so well known and he was a bitapprehensive as to what the responsewould be from members. Hetherefore provided each member witha short description of the work you doand the services you provide. It waswell worth the effort as club membersraised a total of £318.00 some 40%higher than our previous best! Wealso took the opportunity of involvingfamily and friends in our fundraisingefforts and raised £440. We hope thisdonation will help benefit the manythousands who are in need of yourservices.

Yours sincerelyP P

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Caring forColostomatesA practical guide for staff inNursing and Residential Homesand those who care for acolostomate at home

Not all the calls and e-mails wereceive at CA head office are frompeople who have a colostomythemselves. Nurses and care assistantsin residential homes will contact usfor advice and information.Sometimes it will be a partner orother family member who will becaring for a colostomate when theycome home from hospital. Perhaps itis someone who has a relative orfriend with a stoma coming to stayand they want to know how they canmake their visitor feel morecomfortable and relaxed.

The sort of questions they ask are:When in the bath or shower shouldthe bag be left on or taken off? Howdo we dispose of the used pouch?What should we be giving him/her toeat?

Our new carer’s leaflet answers allthese questions and more:There is a patient profile for recordingthe type of stoma appliance currentlyused and the name and the contactdetails of the current supplier – usefulfor those living in a nursing orresidential home - as well as otherimportant information and telephonenumbers.

Diagrams show the different types ofbag available and how to change it.The leaflet also considers common

concerns that a carer may have e.g.bleeding when cleaning around thestoma, mucus discharge from therectum, ballooning, pancaking etc. Itexplains why these problemssometimes occur, how to deal withthem and when to seek medicaladvice.

Pain and Discomfortin the Rectum andPerineum followingStoma Surgery

Regular readers of Tidings mayremember that in Issue 20 we askedfor ostomates to contact CA if theyhad experienced pain in the rectum orperineum following stoma surgery.Some of the replies we received werepublished in issues 22 and 23. Now, with the help of PennyFitzgerald, Lead Colorectal SpecialistNurse, Tina Lightfoot, Lead Nurse forSurgical GI Services, and JulieClements, Stoma Care Nurse from theCountess of Chester Hospital NHSFoundation Trust, we have published aleaflet on this subject.

The causes of this type of pain anddiscomfort are not fully understoodand will depend on whether therectum and anus are still intact, or ifthe rectum has been removed and theanus closed. Various treatments andcoping strategies are discussed. Ninecolostomates share their experience ofhow they suffered from pain in thepast or how they live with thediscomfort today.

Freephone helpline:0800 328 4257

Caring forColostomates

A practical guide forstaff in Nursing and

Residential Homes andthose who care for acolostomate at home

www.colostomyassociation.org.uk

Freephone helpline:0800 328 4257

Pain and Discomfortin the Rectum and Perineum

following Stoma Surgery

www.colostomyassociation.org.uk

NEW for 2012...Two patient information leaflets

S U P P O R T N E W P A T I E N T I N F O R M A T I O N L E A F L E T S

CA is updating the leaflet onrectal discharge...We are hopingto include the experiences of howpeople with a stoma cope withthis problem. If you have sufferedfrom a discharge of mucus fromthe rectum, please contact theAssociate Editor by writing to CAHead Office or e-mail...associate-editor@colostomyassociation.org.uk

Alternatively, call us on Freephone:

or email us at mediownlabel@aah.co.uk

0800 626 524

Ostomy Accessory RangeAvailable on prescription through all leading Home Delivery Appliance Contractors and Pharmacies

Suitable for the care of Ostomy, Continence and Wound care patients

Sting free Lifteez Adhesive Remover and Derma-S Barrier Film

Excellent Quality and Value

If you would like FREE samples of any of these products, please complete this coupon and return it to: Wilkinson Healthcare, FREEPOST NG203/1, Unit 9 Glaisdale Business Centre, Glaisdale Parkway, Bilborough, Nottingham, NG8 4GA

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I agree that this request will be handled by Wilkinson Healthcare or AAH

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1 6 | T I D I N G S | W I N T E R 2 0 1 2

S H O W C A S E S T O M A C A R E P R O D U C T S A N D S E R V I C E S

Tidings is always interested to learn about new stoma care products and services...frommanufacturers and suppliers. Colostomates...if you have found a stoma care product orservice beneficial to ‘living with a colostomy’ please let Tidings know. YOUR findingscould make ALL the difference to other colostomates.

Update on stoma care products and services

From Pelican Healthcare...Pelican Protect Plus Non StingBarrier Film with added Vitamin E

Pelican Protect Plus provides theoptimum in skin protection with thebenefit of VitaminE to nourish andmoisturise the skin.

Pelican Protect Pluswill safeguard theskin againstadhesives, solidand liquid wasteand enzymes.

Pelican Protect Plus is supplied in asingle sachet for discretion andconvenience.

Pelican Support StomaWaistband...

Pelican Healthcare is delighted tointroduce the Pelican Support StomaWaistband, aseamless unisexsupport garment ina soft andbreathable fabricproviding theultimate in comfort,confidence anddiscretion.

Pelican Supportprovides lightersupport for smallhernias, and is ideal for use duringphysical activities to provide extrasecurity, support and confidence.Pelican Support provides a smootherbody shape and is ideal for swimmingand intimacy.

Pelican Support is available in 3 sizes,and there is a choice of white orbeige to suit all preferences.

For further information please callthe Freephone Sample Helpline on0800 052 7471, visitwww.pelicanhealthcare.co.ukor e-mailcontactus@pelicanhealthcare.co.uk

Comfizz New Product ‘Level 2and Level 3 Support wear’

Level 2 Medium Support WearLevel 2 support wear (boxer or briefstyle) provide all the same benefits aslevel 1 but with that little bit moresupport. The garments are firmer &can support a hernia or support themuscles during physical activitywithout restricting the stoma. They arealso ideal for discretely holdingincontinence pads in place. Softbreathable fabric with two way stretchfor an ultra comfortable fit. Availableon prescription.

Level 3 Firm Support BeltPremium firm support belt, ideal forholding hernias, protecting herniarepairs and giving extra protection andsupport during strenuous activity orsupporting prolapsed stomas.Built in stabilising ribs preventwrinkling ensuring stable support.Velcro fastening for easy fit. Integratedprolapse cover provides total supportwithout restricting the stoma. Differentapertures available, to fit most bagflanges, maintaining a secure fit formaximum comfort.Available on prescription

Stoma ProtectorThe protector offers additional rigidprotection against pressures orunwanted forces onto the stoma forexample from seat belts or physicalsports. This is a useful optional extrawith the level 3 belt, it simply velcroson.NOTE: The protector can only be usedin conjunction with the level 3 belt.Available on prescription

To order or for further informationvisit www.comfizz.com or tel theComfizz team: 01757 229 531 oremail charlie@comfizz.com

T I D I N G S | W I N T E R 2 0 1 2 | 1 7

New Amcare website launched...Amcare are pleased to announce that following on from the launch of theConvaTec Stomacare patient website earlier this year, we have now launched anew Amcare website.

This site aims to provide information and support to existing and potentialAmcare clients, with guidance on the services that Amcare offers and how toorder products, along with links to support groups and associations. With afresh look and feel, this site has been designed to be user-friendly and clear forour customers, to ensure that users have full and comprehensive informationabout Amcare and the services we provide.

The new website can be visited at www.amcaredelivery.co.uk

Suportx Easy PeelHernia/Abdominal support belts

Suportx Easy Peel Hernia/Abdominalsupport belts are made from adynamic material that allows thestoma to function regularly whilstproviding comfort and support. Theunique twin attachment systemallows the garment to be worn andadjusted easily. The Easy Peel systemallows the stoma pouch to beaccessed whilst the belt is still beingworn, ideal for when emptying orchanging the pouch whilst out andabout.

NEW Suportx Tube belts, availablewith or without lace, are ideal forsupport and offer ultimate discretion.The tube belts can be worn underfitted clothing and are ideal for usewhen exercising, playing sports andeven swimming (tube with no laceonly). A wide variety of sizes, depthsand bespoke options are available onprescription.

Please see our main advert onpage 19 and Call Free - 08009179584 for further information.

OstoMART Ltd are pleased to announcethat we are one of the first DispensingAppliance Contractors to be fullyoperational for the Electronic PrescriptionService (EPS) in England.

This means that patients using our Responder Home Delivery Service will beable to benefit from an even faster service, no need to collect your prescriptionsin person and post them, more choice and an overall easier process from thecomfort of your home. You can ask your GP practise if they are set up for EPSand if not when this will happen.

To register for the Responder Service or to find out more about EPS andhow it can benefit you call us on Freephone 0800 220300 or visitwww.ostomart.co.uk

1 8 | T I D I N G S | W I N T E R 2 0 1 2

R E A L L I V E S M A R Y ’ S S T O R Y

What Mary Did Next ….

I was stopped in the streetthe other day by a completestranger, who’d read aboutme in Tidings...quite a shock,but a pleasant one, when Ilearned that my story hadhelped someone feel betterabout their own experience.One of the good things aboutTidings is that through itspages we can all shareexperiences, and so helpeach other on what can be adifficult journey.

So I’m here again to share a bit moreof my story and to explain whathappened after my abrupt departurefrom the Clipper Race (rather thanfrom the port it was leaving). Therightness of my retirement was borneout a few days later, when all thesymptoms came back with avengeance and I returned to hospitalat high speed. Hernia surgery becamea matter or urgency, just as the boatswere battling stormy conditions in theBay of Biscay. I was definitely in theright place!

Before my initial surgery, theimportance of not doing anythingstrenuous during the recovery periodhad been drummed into me, and Ididn’t fancy a hernia, so I was a veryobedient patient. Nonetheless, ahernia developed within a fewmonths and, as is the way of suchthings, grew. I leant to live with it, butit was not so much a love-haterelationship as a hate-haterelationship. My surgeon looked at itand suggested it was best to donothing unless it became reallytroublesome, and we should watchand wait. Then we moved house, andall my post-cancer care wastransferred to Exeter, where I cameunder the care of the CA’s Vice-President, Mr. Ian Daniels. He askedme how I felt about the hernia. I tooka deep breath and, trying to remaincalm and matter-of-fact, gave a replysomething like “well, it causes me alot of discomfort, and it’s very largeand prominent, which makes itdifficult to find any clothes that fit, letalone something that camouflages it,and every morning I have to strapmyself up with heavy-duty lycra firstthing and wear it until last thing atnight, and I’ve banned mirrors, and doI have to live with this for the rest ofmy life?”

Mr Daniels gave me a bit of a lookbefore saying, equally calmly, “Notnecessarily. I need to look at yourscans. And you need to be at thebottom of your weight curve beforeany surgery.”

An elegant turn of phrase, I thought,and went home to start losing the twostone or so which had piled on as Iate my way through inactiveconvalescence, fighting depressionwith food. In the spring of 2011 I metMr Daniels again, and he confirmedthat surgery was not only possible, butcould and should go ahead inOctober, after I had completed myocean racing adventure.

So much for planned surgery! When Iturned up yet again as an emergency,Mr Daniels’ response was “let’s getthe job done and get you sailing againas soon as possible”. Now call me old-

fashioned, but I always thoughtsurgeons were creatures of geniuswho perform miracles with bodies butsometimes fail to see the biggerpicture of the patient before them;suddenly, I was being treated assomeone with a life which was amatter of importance to medical staffas well as to the patient herself. Thevalue of this approach to anyone whohas to live with a long-term physicalcondition is inestimable.

The surgery itself was lesstroublesome to me than I hadexpected, with little post-operativepain, very well controlled in hospital. Idid, of course, have to observe a strictrecovery programme of nothingstrenuous for a full six weeks, butwe’re all used to that after stomasurgery anyway! My new stoma (I losta bit more of my colon) workederratically, just like the original in theweeks after surgery, and needed timeto settle down and behave properly,and, at the time of writing, may stillneed some minor adjustment. But,whilst I shall never have the tummy ofa supermodel, I no longer have adroopy mass like half a watermelonon one side, and I can now wear thesame sort of clothes as any otherwoman. Above all, I am grateful that Inow get the lycra out only forstrenuous activities, and supermarketshopping, and can live a normal lifefree of discomfort. I am very careful toavoid activity which would encouragea recurrence of my hernia!

The best news is that I have now hadofficial confirmation of a place on VisitFinland for Leg 8 of the Clipper Race! Ishall sail from New York early nextJune (wearing the lycra as a safetymeasure!) feeling comfortable andconfident about my body, andhopefully demonstrate that adventureis open to ostomates as much as toanyone else. And maybe I’ll get thechance to tell you all about it when Iget back...

Mary Le Coyte

Mary Le Coyte

www.suportx.co.uk

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Edith Brighton, 67 years old, from

Ormskirk, Lancashire has enjoyed the

beach holiday that, since major bowel

surgery, she never dreamed possible.

It was on her last holiday in Crete three years

ago that she became unwell. She thought

she was suffering badly from haemorrhoids.

But she was in for a shock on arriving home:

Edith was referred urgently to Southport

Hospital where a sigmoidoscopy revealed

a seven inch tumour in her anal canal.

The operation opened up her stomach from

the naval down, removing lots of muscle

and she was fi tted with a non-reversible

stoma. She was then admitted to the

specialist cancer unit for 3 months’ of

intensive radiotherapy and chemotherapy.

But after that unexpected and traumatic

experience, Edith declares she’s never

looked back.

Taking control

Edith tried a variety of colostomy bags,

doing lots of research herself and taking

advice from her stoma nurses. Six months

ago she was introduced to Vitala™ Continence

Control Device (CCD) from ConvaTec.

She adapted to it well and built up the wear

time gradually. “The Vitala™ has been fi ne,”

she says. “You can have mishaps with it,

but you can have mishaps with colostomy

bags too.”

With the confi dence that Vitala™ CCD has

given her, Edith has been able to take the

beach holiday she didn’t dare think possible.

Vitala™ can be worn for up to 12 hours, so it

was perfect for a long day travelling from home

to the hotel. “I coped fi ne on the aeroplane –

no problems at all,” she says.

For further information on Vitala™ Continence Control Device, please

call 0800 467866, email vitala.webcare@convatec.com or visit www.vitala.com

®/™ Indicates a trademark of ConvaTec Inc. ConvaTec Ltd is an authorised user. ©2011 ConvaTec Inc.

AP-011576-GB

VIT010

September 2011

The confi dence to swim

“I even went swimming in the sea wearing my bikini

and Vitala™!” she says. “I was a little bit nervous at fi rst,”

she laughs, “but it was absolutely brilliant!” This was

the fi rst time she’d been allowed to swim since the

operation. “I used to go once or twice a week and

take my granddaughter too, so it was a blow not to be

able to,” she says. “Because of where the cancer was,

my oncologist advised me against swimming in pools

because of the risk of infection. But the sea is OK.”

Edith said it felt strange, not having swum for three

years and being a little unsure which muscles had been

removed, but by the time she got up to her chest in

the sea she thought: right, I’m going for it! And Vitala™

even held up when big waves were breaking over her.

“It felt wonderful!” she says.

At fi rst she was anxious about Vitala™ staying in place,

so checked it as she came out of the sea. She also

worried in case her swimsuit clung to the device,

drawing attention to it. But her mind was put to rest

when she struck up a conversation with a retired

couple on the beach. “It turned out the man had

worked in the medical profession,” she says. “He asked

very politely whether I had a stoma and how long I’d

had it. He was amazed to see me confi dently splashing

in the sea and looking so well enjoying my holiday!

He couldn’t believe how discrete it was.”

The benefi ts of wearing Vitala™ far outweighed Edith’s

concerns. “I thought I would never go on holiday

again. I was very apprehensive at fi rst, wondering

how my stoma would take to the heat, but they were

unnecessary worries, even though it was 45 degrees C!”

Keeping life as normal as possible

“The stoma has extended my life, it’s part of me now.

It doesn’t make you an invalid,” she says. The surgery

meant Edith has had to learn to modify her level of

activity. She used to be a keen walker and now can’t

carry heavy shopping or push a loaded trolley. She looks

after her two grandchildren during the week and was

worried about taking them to the park. But she is

resourceful and determined to keep her life as normal

as possible. “You do get anxious, but you’ve just got

to stay positive,” she says. “A stoma doesn’t mean

it’s the end of your life.”

Edith is highly independent but knows her stoma nurse

is at the end of the phone if she has any questions.

“With a stoma, it’s all about learning what is ‘normal’

now.” Edith has a hernia as well as her stoma, so has

learnt how to apply Vitala™ to suit her particular needs.

Everyone’s surgery is different and it is important

that a stoma nurse ensures that Vitala™ is the right

device for you.

“With Vitala™ I can do my gardening again,” she says.

“It doesn’t prevent you kneeling down or stretching.

I can climb up my step-ladder and cut the top of

my hedge!”

Edith is now planning to go abroad to see her son

this year and another beach holiday. “My family

think I’m doing absolutely brilliantly,” she says.

Please be advised that the testimonials above refl ect only the experience

of the user who has provided the testimonial. Results referred to in the

testimonial may not be typical and individual results may vary.

2 2 | T I D I N G S | W I N T E R 2 0 1 2

H E A LT H D I E T A B A L A N C E D V I E W

Sophie explains what can cause constipation and how alterations indiet and lifestyle can help to prevent this problem...

Sophie Medlin BSc RD Colorectal and Nutrition Support SpecialistDietitian at Torbay Hospital, South Devon Healthcare NHS FoundationTrust writes for Tidings on aspects of diet and your stoma...

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AboutConstipation...Constipation is a problemwhich is thought to affect upto 30% of the population. Itis generally described aspassing stools less frequentlythan usual or passing stoolswhich are dry, hard andlumpy. It can cause manyunpleasant symptoms such asbloating, pain, feeling sickand loss of appetite. Inostomates, constipation canalso cause the stool to buildup at the top of the bagleading to what is referred toas ‘pancaking’, which cancause leakages and sore skin.

In general, only patients withcolostomies are at risk of constipation.This is because it is the large bowelthat absorbs most of the fluid wedrink. People with ileostomies shouldpass looser stools. If your ileostomystops working for six hours or more,you must seek medical advice. If youhave ever been told you haveadhesions or strictures, or have beenput on a ‘low residue’ diet by yourdoctor or consultant the followingadvice is not suitable for you.

Constipation can be caused byseveral factors.

Diet One of the key things which cancause constipation is diet. This maybe because the diet does not provideenough fibre, the amount of food isnot adequate or not enough fluid istaken.

There are two different types of fibre:

Insoluble fibre resists digestion in thesmall bowel and adds bulk to thestool, increasing stool volume andincreasing the transit time of foodthrough the bowel. Generally, it ishigh fibre cereals and the skin, pipsand peel of fruit and vegetables whichprovide us with a good source ofinsoluble fibre.

Soluble fibre acts like a sponge,absorbing water and helping the stoolto remain soft and easy to pass.Soluble fibre is found in the flesh offruit and vegetables, oats and barley.

In general, people should try toachieve a balance of the two fibres intheir diet for good digestive health.However, ostomates may find it moreconvenient to have more soluble thaninsoluble fibre to reduce the volume ofstool passed but keep the stools soft.

When introducing more fibre into thediet, do it slowly and change onething at a time. It is important that

you increase your fluid intakealongside taking additional fibre.

Higher fibre foods Peas, beans, Brussels sprouts,parsnips, spring greens, wholemeal,rye and granary bread, wholemealpasta, bran-based breakfast cereals,muesli.

Foods with a medium fibrecontentMost fruit and vegetables, nuts, brownand white bread, brown rice, otherpasta, baked goods containingwholemeal flour or dried fruits,wholewheat breakfast cereals,porridge.(Above taken from The Manual ofDietetic Practice, edited by BrionyThomas, Third edition, 2001).

Good ways of adding fibreinclude:• Baking cakes with wholemeal flour • Having fruit cake or foods

containing dried fruit• Drinking juice with the pulp, or

having prune juice • Trying smoothies • Adding dried fruit to breakfast cereal

FluidFluid also plays an important role inpreventing and treating constipation.It stands to reason that if there is notenough fluid going in by mouth, thestool will not contain enough fluidand will be too hard. Most adultsneed between 1.5-2 litres (3-4 pints)

T I D I N G S | W I N T E R 2 0 1 2 | 2 3

of fluid per day. This includes all fluidexcept for alcoholic drinks. Some tipsto help you get enough fluid are:• Keep a jug or bottle of water in the

fridge so you can measure howmuch fluid you are having

• Keep a range of cordials, flavouredwaters and other drinks to temptyou to drink more

• Use ice and nice glasses to makedrinks more appealing. Somepeople also find a straw helpful

• Ensure you drink more in hotweather and after exercise toreplace what you lose throughsweat

If you feel you are getting enoughfibre but are still constipated it is mostlikely that it is inadequate fluid intakethat is causing the problem. This isbecause the fibre acts as a sponge inthe bowel, absorbing water andsoftening the stools. This processhowever, relies upon plenty of fluidbeing taken by mouth. Adding extrafibre and not adding extra fluid couldactually make you more constipated.

Exercise Being inactive as a result of illness ora chronic condition can add toproblems with constipation. If you feelthat reduced activity has affected yourbowel motions speak to your GP whomay consider some medication tohelp to relieve your discomfort.However, buying laxatives from achemist and using them long termcan make the problem worse, so it isimportant to speak to your doctor. Take more exercise if you are able.Gentle exercise such as walking everyday can increase the movement inyour bowel and help to relieveconstipation.

MedicationMany medications can causeconstipation, particularly painkillers,indigestion medication, calciumsupplements, water tablets and ironsupplements. However, it is veryimportant that you do not stop takingmedications without first discussing itwith your GP. It is likely that they willbe able to alter your medications toimprove the problem.

When is Constipationnot Constipation?Sometimes when people have had alot of surgery, have hernias or havestricturing disease, for exampleCrohn’s disease, they can develop

intermittent or total bowelobstruction. A bowel obstruction isdefined as:Blockage of the intestines (bowel)producing symptoms of vomiting,distension and abdominal pain, failureto pass flatus (wind) or faeces(complete constipation) is usual.(Oxford Concise medical dictionary,Seventh Edition, 2007, Oxford universitypress).

Some people find that they fluctuatebetween constipation and very loosestools. This is a common problem, butif coupled with abdominal distensionand pain it is important that youspeak to your stoma nurse, consultantor GP to rule out partial orintermittent obstruction.

Your Questions Answered...

Q: Just wondering if you can offersome advice. I've had a colostomy forthree months and haven't been ableto get a proper night’s sleep as mybag fills up with wind during the nightto almost bursting point. I have to getup every two hours or so to empty it.I've read all the lists of good/badfoods and stick pretty closely to them.Is there anything else I can do toprevent this?

A: Wind can be a difficult thing tocontrol. (I wonder if this was aproblem for you before you had yourstoma formed) As you are alreadyfollowing the lists of foods to avoidand include, here is some more indepth information we give to ourpatients with Irritable BowelSyndrome who suffer with wind:

• Drink at least 8 glasses of water per day

• Include plenty of low fibre foods

• Include oats • Try probiotic yogurts/drinks for at

least 4 weeks • Reduce alcohol intake and have at

least 2 alcohol free days per week • Avoid fizzy drinks• Be cautious with the amount of fruit

and fruit juice you include. Try not tohave more than three portions per day

• Avoid foods containing resistantstarch. These include wholegrains,seeds, sweetcorn, muesli, greenbananas, garlic and onions

• Resistant starch can also beformed during the cooking processso you might find that reducing yourintake of pre-cooked or ready-mademeals containing, potato, pasta orrice, oven chips and otherpreheated potato products may help

• Foods which typically cause windinclude beans, green leafyvegetables, onions, garlic, leeks,asparagus, Jerusalem artichokes andchicory so try to reduce your intakeof these

Hopefully there will be somethinghere that you can pick out as thepossible cause of your problem.Remember to cut out one thing at atime so you can be clear about whichfood is causing your problem. I hopethis helps.

Note: As always thisadvice is very general andwill not be suitable foreveryone reading thisarticle. If you are unsureplease speak to yourconsultant , dietitian orstoma care nurse.

2 4 | T I D I N G S | W I N T E R 2 0 1 2

R E A L L I V E S F A Y E ’ S S T O R Y

During my school days I needed aone-to-one carer as I wascontinuously incontinent. Every coupleof months there were visits to AlderHey Hospital for check-ups, clinic visitsand more tests. When I was nineyears old I underwent another “pullthrough” procedure. I rememberwaking up on the ward in the middleof the night in pain and wanting mymum. Thankfully Mum was able tostay on the Alder Hey site at the“Ronald McDonald House” run by acharity, to allow parents to stay in acomfortable room and be close totheir sick children.

Unfortunately this “pull-through” wasunsuccessful too. As I was reachingmy teenage years and still needed towear nappy-like pads, my consultantsuggested a colostomy. I rememberthe clinic where he told my parents. Ididn’t have any idea what was beingsaid, but I could sense there was nota nice atmosphere and we were beingtold of more surgery.

The operation took place when I wasthirteen years old, in my third year ofsecondary school. I said goodbye tomy friends as I would be off school fora long time. On April 6th 2003 I wentin to Alder Hey Hospital. Myconsultant and anaesthetist came tosee me on the ward. The position ofthe stoma was marked on mystomach: I didn’t know theimportance of where the colostomywas sited until I was older. In myteens I realized it affected the type ofjeans and tops I could wear. When Iwent down to theatre I was actuallyexcited at the thought of a new me,with no incontinence. I was naiveabout the extent of pain and the longroad I was facing.

My operation lasted twelve hours. Thenurses kept my mum and dadinformed about what was going onand why it was taking so long; theoperation should have only lastedaround four hours. I had cysts on myovary which they drained, and alsothere were lots of adhesions, scartissue from previous operations, whichwere tangled together around thebowel. The surgeons had to cutthrough all these adhesions beforethey could even begin on thecolostomy.

For the first few days I just slept, onlywaking up while nurses made mecomfortable and checked my catheter,drip and other medications. I slowlystarted to recover. After about a weekI started dreaming of McDonald’s andKFC, I felt hungry, which was a goodsign. The first things I ate wereyoghurt, then toast. I took one day ata time: getting out of bed and sitting

in a chair for a bit longer each day,watching TV or doing some arts andcrafts with my mum. One day I had asurprise when three friends fromschool came to see me. The nursesdisconnected the drip, we wentoutside, had an ice lolly and sat in thesun. I’ll never forget the green ice lollycoming through my naso-gastric tube,which was there to stop me feelingnauseous and went up my nose anddown into my stomach.

Then a few days later my mum anddad took me to Knowsley Safari Park.As I was still quite poorly I sleptthrough most of it; the slightest bit ofeffort to get up out of bed made meexhausted. I still had a long way to goto get better.

The time came for me to have mycolostomy bag changed for the firsttime. I had to soak it off in the bath. Ithink that was the most painful part ofthe whole procedure. The nurses wereso patient with an impatient patient.Then I was discharged from hospital. Icould go home and try to lead anormal life without being incontinentand without having to wear pads. Istill felt exhausted: like I had been putin a boxing ring!

I started going back to school, at firstjust for a few hours a week and then Islowly built it up for longer, but often Iwould get jostled in the corridors andhave to go home early. After severalmonths I was so much better and wasgoing out with my friends a lot more, Iwas going swimming and becoming amore confident me. My parentscouldn’t keep me in! >

Pathways to a colostomy

Before I was two months old, I underwent an operation called a “pull-through” where theytook away the “diseased” part of the bowel and re-joined the ends. While the bowel washealing I had a temporary colostomy. However, doctors soon discovered this procedure hadnot worked, so they tried again at nine months old, but this didn’t work either.

When I was two days old I was rushed to Alder Hey Children’sHospital, because doctors were concerned because I hadn’t hada bowel movement. Tests diagnosed Hirschsprung’s disease, acondition where there are no nerve endings in the bowel.

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2 6 | T I D I N G S | W I N T E R 2 0 1 2

I have now had my colostomy for nineyears and would never look back. I dohave blockages and my doctor hasprescribed Lactulose and Buscopan,but, touch wood, in recent yearsthings have much improved. I am nowslowly recognizing the signs of ablockage and I can mostly manage itat home without being rushed intohospital to be put on a drip.

However, my colostomy doesn’t stopme from doing anything. I go to thegym at least every other day. I loveswimming. I just wear my usualclosed bag. At first I wore a one-pieceswimming costume, but now I have alot more confidence and wear atankini.

When it comes to boyfriends, thereare some out there that are genuineand caring, and will understand whata colostomy is. I have had previousrelationships – as serious as can be atthis age. I try and tell the person I’mmeeting about my colostomy almoststraight away, but not too soon - aftera couple of weeks, maybe. They needto get to know you first, but as soonas you are ready, just literally blurt itout at the soonest opportunity. I havethe attitude that if they can’t acceptme with a colostomy – as I do comeas a package – then it’s really notworth wasting my time or their time.

As regards work, I have my own DogGrooming business and have alsodone supply work as a teachingassistant at a school for autistic

children. Then last September I begana four year training course to becomea nurse. My ambition is to work withchildren as I spent so much of myown childhood in hospital.

Since having my stoma I havetravelled abroad, to Spain, Cyprus,Mexico and Florida. I make sure I havetwice as many bags as I normally useand pack half in one suitcase and theother half in another, in case one getslost. I also pack four day’s supply inmy hand luggage. The best thingabout being on holiday is that it’s yourtime to enjoy. Don’t worry aboutproblems with your colostomy, themore your worry the more likely theyare to happen.

I recently climbed Snowdon to raisefunds for Alder Hey Children’sHospital. There were twelve of us inthe group and it took us four hours toreach the top then have a cup of teaand go back down to the bottom. Ihad no problems with my stoma. Weraised £5,000 for the“RonaldMcDonald House”. I am planning ondoing a sky dive for the hospital nextyear.

I am now twenty-two years old andwould like to meet new people of asimilar age with colostomies, but nineyears on I still haven’t met anyone inmy age bracket.

Faye Jones

R E A L L I V E S F A Y E ’ S S T O R Y

What is...Hirschsprung’s diseaseHirschsprung's disease occurs in 1out of every 5000 live births and ismuch more common in boys thangirls.

Ganglion cells are formed in thebaby’s intestine soon afterdevelopment begins in the womb.These nerve cells are needed forintestinal muscles to move foodand digested matter onward by aseries of wave-like contractionscalled peristalsis.

In Hirschsprung’s disease theseganglion cells are formed in theupper bowel but do not spread tothe lower bowel, thus normalperistaltic movement cannot occur,resulting in constipation andblockage.

In infants, symptoms include failureto pass meconium (the sticky blacksubstance that lines a developingbaby’s bowel during pregnancy)within the first 24-48 hours, bilevomiting, a distended abdomenand poor feeding.

Hirschsprung’s disease is diagnosedby using a number of techniques.The most vital diagnostic tool is therectal biopsy whereby a tissuesample is taken from the rectumand studied under a microscope tosee if ganglion cells are present.

Treatment involves surgery wherethe affected part of the bowel isremoved. This may be performed instages with a temporary colostomy(or ileostomy) formed to allowtime for the colon to recover. Insome cases the stoma may bepermanent.

For more information aboutHirschsprung’s disease a leaflet isavailable from Core, a charity thatfunds research into gut, liver,intestinal and bowel illnesses.

Available by post from...

Core Freepost LON4268London NW1 0YT

Phone: 020 7486 0341Email: info@corecharity.org.uk or to download on line atwww.corecharity.org.uk

Faye on her recent trip to Snowdonia to raise funds for Alder Hay Children’s Hospital

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I R R I G A T I O N C O L O S T O M A T E S E X P E R I E N C E S

Irrigation and you...

T I D I N G S | W I N T E R 2 0 1 2 | 2 9

Editors Comment

I would like to thank Lucy for givingup her free time to attend the

CA Open Day - the ‘irrigation’ standwas very busy indeed!

Lucy writes...I had several interestingconversations while ‘manning’ theirrigation stand at the last CA OpenDay in Leeds.

The general thread of theconversations were in regard toindividual suitability, how soon to startafter surgery and about the irrigationprocedure itself.

Some of the questions were asfollows:

It had been mentioned, within one ofthe presentations, that colostomyirrigation is for: a left sided stoma

Q: My colostomy is on the right side,can I still learn to irrigate?

A: The term ‘left sided colostomy/stoma’is used to indicate that the stoma isformed from the sigmoid ordescending colon. In other words,enough large bowel remains for thebody to produce fairly formed waste.There would be poor results and littlepoint irrigating a colostomy formedmuch higher in the bowel, or near theIleum, as ileostomies and obviouslyurostomies cannot be irrigated. Yourcolostomy may have beenrepositioned to the right side but aslong as your colon has not beenforeshortened, the position doesn’tpreclude irrigation.

Q: I had my surgery a month ago,when can I start to irrigate?

A: There is no hard and fast ruleabout when to start irrigating, butthree months post-surgery gives timefor recovery and the strength to startlearning the process.

Of course, individual circumstancesalways need addressing, such aswound healing, chemotherapy andbowel pattern. Additionally, somepeople with a colostomy will beunable to irrigate due to other

medical problems. It is very importantto request an appointment with yourstoma nurse to find out if it’sappropriate for you to learn to irrigate.

Q: I am a keen traveller – howwould I manage when on a busytour schedule? (I’m thinking of atrain journey through India!)

A: If a holiday schedule necessitatesvery early starts or long journey times,such that an irrigation session has tobe missed – don’t worry about it!Wear a drainable pouch (if disposal isa problem) and catch up on yourroutine again when you can. Generallyit’s helpful to keep to a regular habit,but sometimes ‘life intervenes’! Somepeople don’t irrigate when away andothers go with hooks, string/cord,jugs, kettles, sterilizing tablets and soon.

Irrigation is about gaining control ofbowel habits, attaining more freedomand confidence in activities – sothere’s a trade off with theorganisation and time required toachieve this. Each individual will havedifferent priorities, so it’s a matter ofdoing what is right for you.

Q: How long does the proceduretake?

A: I usually advise people who arenew to irrigation to allow an hour forthe whole process. But it’s not anexact science and everyone will differsomewhat.

Initially, it takes 5-10 minutes to runthe 500 – 750mls of warm water intothe bowel. Once it has run in, thecone is removed and there is often areturn of some irrigation fluid within afew minutes. Most of the return isusually within the first 20 minutes, butI usually advise to keep the sleeve onfor a full hour for the first few times(secure the end of the sleeve and

carry on with washing/reading/littlejobs) and then wear a full size pouch.It’s wise to be cautious during theearly days of irrigation while you findout how your body is going to adaptto the new routine. New irrigatorsneed to be patient in allowing timefor the procedure - seasoned irrigatorsmay complete the procedure in 15-20mins!

Other questions relating toindividual suitability were answeredin the following way:

The potential irrigator needs to havereasonable hand/eye coordination,the ability to learn and perform asequence of steps and the motivationto give time to learn the procedureand give discipline to a daily or neardaily routine.

Irrigation would not be suitable forthose with active cardiac or renaldisease or ongoing bowel disease. Theindividual will need to have acolostomy that is visible and withoutcomplication, such as prolapse orlarge parastomal hernia.

It is important to discuss individualsuitability with your stoma care nurseso that the procedure can be startedsafely and with opportunity forsuccess.

It may take several weeks forsomeone to achieve a predictablebowel pattern with irrigation, but oncemastered it can afford the individualnew freedoms and an enhancedquality of life.

Sue Hatton Executive Trustee writes...at the CA Open Day 2011 in Leeds last Octoberwe were joined by Lucy Russell CNS/Stoma Care - Norfolk and Norwich UniversityHospitals NHS Foundation Trust. Lucy is passionate about ‘irrigation’ and has writteninto Tidings previously. Lucy kindly agreed to explain the equipment and proceduresinvolved in ‘irrigation’ to CA attendees. Here are some of the Q&A’s from the day...

3 0 | T I D I N G S | W I N T E R 2 0 1 2

H E A LT H P A R A S T O M A L H E R N I A S

Parastornal hernias are causedbecause stoma surgery disturbsthe muscle structure, making apotential weak point. Over time,the muscles stretch and losestrength. Violent coughing, heavylifting, vigorous exercise or poormuscle tone can force theabdominal contents, usually theintestine, through the weak spot.

Last year, Salts Healthcareconducted a study to find outmore about what people livingwith a parastomal hernia had tocope with. Salts asked over 300patients with a hernia to tellthem about their clinicaldiagnosis, the type and severityof problems they encountered,how they managed their hernia,what sort of appliances theyused, how they rated them andhow they fell about it. Theirfindings follow...

DiagnosisThe first thing we established wasthat over half of the hernia casesin colostomists developed within ayear of the original sloma surgery.Interestingly enough, another pieceof research published last year foundthat although a lot of people hadhernias, only a quarter of them knewthey had one. Our study also foundthat the vast majority of herniasare diagnosed by either a hospitalconsultant or stoma care nurse. GPsonly diagnose around 10% of cases.So we have a common complicationof stoma surgery which patientsare failing to spot but stoma carespecialists can diagnose on review.That could mean that around half

the people who don’t have a regularreview with a stoma care specialistmay have an undiagnosed hernia.

Signs and SymptomsSo what are the signs of a parastomalhernia? As we already said, the mostobvious sign is a bulging round thestoma. The study also found that thestoma can change size by as much as8 millimetres, or the width of a pencil.Just over a third of colostomists saidtheir stoma was uncomfortable and athird experienced odour problems.

Over half get a dragging or pullingsensation and about half said they feltheaviness around their stoma. Anothermain issue raised in our study was anincrease in problems with the skinaround the stoma. The majority ofcolostomy patients rarely, if ever,reported problems with their skinbefore developing a hernia. Afterdeveloping a hernia, people said theirskin became more sore and itchy.Hernias tend to distort the skinaround the stoma, so it’s harder to geta good seal around Ihe pouch. Wealso found that developing a herniaalso seems to affect the size of astoma and just under half ofcolostomy cases reported their stomahad grown the width of a pencil.

Obviously, changes in skin flatnessand stoma size can have an effect onhow well a pouch fits. If the pouchdoesn’t fit properly, you run anincreased risk of having a leak. Weknow from other researchers that themain cause of skin problems is thecorrosive output from the stomacoming into contact with the skin anddamaging it.

However, the biggest change peopletold us about was that the skin

around the stoma became thinner.If the skin is thinner, it’s more likely tobe damaged if there's a leak, or ifpeople are rough when they changetheir pouch.

Leaks also had an impact on peoples’mental wellbeing. The majority ofstomas leak at some time during theday and night, and there is asignificant minority who have badleaks, even though the majority ofcolostomisls feel that leaks during theday are not very bad. Leaks during theday also seem more likely to happenon a weekly basis or less often.Night time leaks are different though.The majority tend to be happeningmonthly or less often and people aremore likely to rate them as bad ones.We can only speculate on why thatis. Is it because they are generally lessfrequent and so more upsetting whenthey happen? Or is the physicalamount leaked more?

ManagementWhen we asked whether having ahernia made it more difficult to put ona pouch, nearly half of the colostomistsagreed. Strangely enough, almost halfof them said that having a herniamade no difference to how theymanaged their stoma. This seems tobe backed up by the fact that 68% ofpeople continued using the same typeof appliance. Of those who changedtheir appliance, the majority hadswitched to a convex adhesive.

AccessoriesAlthough almost half the study usedsupport belts or girdles to managetheir hernia, only a quarter thought itwas the best way to manage a hernia.Despite that, support belts were stillthe most popular way to manage ahernia.

Are you suffering in silence?Living with a parastornal herniaBy Caroline Cowin and Caroline Redmond

There are around 102,000 people in the UK living with a stoma. The latestresearch suggests that half could go on to develop a parastomal hernia, abulge around the stoma.

The second most popularmanagement technique was, ‘Forgetabout it and get on with life’. Findinga mental attitude being classed as agood management technique mightbe surprising until you delve a littledeeper. Although nearty two thirdsof colostomists agreed that havinga hernia had made them more self-conscious, only a third said theyworried about it. We don't knowwhether this is because people thinka hernia as part of having a stoma, orthey don’t want to appear concerned.Certainly, this may be somethingto do with the fact that over half ofhernia sufferers rarely, if ever, soughthelp from a trained stoma specialistonce their hernia was diagnosed.

ConclusionsThis study has given us informationabout the diagnosis, effects, andmanagement of parastomal hernias,We know that people generally startdeveloping a parastomal hernia withina year of surgery, many withoutrealising it. We know reviewingpatients regularty for the signs andsymptoms of a hernia can help reducemanagement problems. However wedon’t understand enough aboutmanagement techniques, and may bewasting time and money on thingsthat don't work. It's clear we needbetter understanding of the needs ofthe patient. It's also important that wedevelop more appropriate individualmanagement techniques to look afterthe physical and mental effects of ahernia.

One way is to try and focus on theindividual rather than get lost in thestatistics. We have created ‘Mary’, a‘typical colostomist’ suffering with aparastornal hernia. Mary is a fictionalcharacter, but her story is based onthe experiences shared by realcolostomists diagnosed with aparastornal hernia. We use Mary as athumbnail sketch to remind us aboutwhat she has to deal with and howshe copes. With her help, Mary willkeep us on track to deliver betterresults for her and others who needhelp and support with a parastomalhernia. Read Mary’s story now to seewhat you have in common and whereyour story differs (see opposite).

Mary's story

A Colostomy patientliving with a parastomalhernia

Age: 65 yearsGender: FemaleWeight: “About right”Stoma type: ColostomyStoma age: 6 yearsAppliance type: One pieceAdhesive type: FlatChange frequency: Once or twice a dayHernia diagnosis: Stoma Care Nurse

“I was diagnosed with bowel cancer in2004 and I've had my stoma since 2005.My hernia was diagnosed about a yearafter surgery.

I get discomfort around the stoma. It feelslike there’s something dragging or pullingon it. I also have problems with odour. Iordered a support garment to try andstop the heavy, dragging feeling but Idon't always find it comfortable.

Before I had the hernia, I seldom had anyproblems with my skin. Even when I did,they weren't usually bad. Now I getproblems more frequently and they seemto be a bit worse than before. The biggestchange I've noticed is that the skin seemsto be getting thinner. Il also feels moresore and itchy now, but the skin doesn’tseem to be as red or irritated.

I also get leaks, both during the day and at night. It mayhappen about once a week in the daytime, and the leak is not sobad. It leaks less often at night, but it's worse when it happens.I’ve also noticed that my stoma seems to be slightly bigger.It’s grown about the width of a pencil, which is noticeable.

I also have more trouble putting on my pouch now as well. I haven’t had tochange my appliance but a nunber of people I know have started using aconvex adhesive.

I do worry about having a hernia, it's made me more self-conscious.I normally ask the stoma care nurse at the hospital, if I need advice”.

(Mary is a composite persona based on research conducted by SaltsHealthcare Ltd.)

T I D I N G S | W I N T E R 2 0 1 2 | 3 1

Editors comment:If you have a story to tell about

your parastomal hernia we’d loveto hear from you...see page six

‘How to get in touch’.

3 2 | T I D I N G S | W I N T E R 2 0 1 2

H E A LT H R E A D E R ’ S R E P L I E S P O U C H D I S P O S A L

Dear Editor

I read with some interest Rosemary’sarticle regarding how to dispose ofused appliances. My stoma is almost a“contemporary” of hers having beenoperated on in August 1991. Initially Iused a drainable pouch and as thingsbegan to get back to normal it wassuggested that I used a closed bag,which I did, but soon reverted to thedrainable ones, and have not changedsince.

Firstly, it is easier to empty a drainablepouch than to change a closed one,no matter where you are.

Secondly, if you are having to carryout this procedure even oncedaily, and probably more frequently, itis doing your skin no good at all.

Thirdly, at a time when waste is verytopical would it not prevent the wasteof plastic if everybody used drainablepouches? It wouldn’t do themanufactures a lot of good, I suspect,but does that matter.

To a degree she answers my questionwhen she states:-“The drainable bagsI take with me...are designed to beemptied and so don’t present aproblem.”

Is it necessary to use a closed bag atall?

YoursArthur

Dear Rosemary

I read with interest your article on thedisposal of used appliances in theAutumn 2011 issue of Tidings.

Like you, I do as I was first taught bymy stoma care nurse. Her method israther simpler than yours - perhaps anopportunity to make your life easier?She advised simply emptying the

majority of the contents of the usedpouch into the toilet using the samehole it came in through. Thickercontents can be encouraged out liketoothpaste from a tube! The flange isthen folded over on itself - for a onepiece appliance this then seals it, for atwo piece it simply leaves a cleanouter surface to hold on to. Thefolded pouch is then placed in adisposal bag which is tied up anddropped in the household waste. Thesame process is applied to usedirrigation tubes. No cutting, no rinsing,no fuss!

I find I can do a change in less than acouple of minutes, in any toilet as noextra space or equipment is needed.When in a public toilet I hold the tieddisposal bag and put a coat or othertop over my arm, then discretely dropthe bag in the nearest bin.The suggestion of rinsing usedappliances, double wrapping or usingclinical waste collection seems to bemaking life unnecessarily difficult.Disposable nappies are put in a nappysack then into the bin. Dog poo isbagged and dropped in any litter bin(in our village the dedicated dog binshave been removed and we areencouraged to use any litter bin). Ithink a used appliance in a disposalbag is less of an environmental healthissue than either of these items and Ihave no qualms about my disposalmethod.

Best regards,A.B. (Mr)

Disposal of UsedAppliances – a reply

Rosemary Brierley’s article in the lastTidings about Disposal of UsedAppliances got me thinking. Should Ilook at the way I go about disposingof my used appliances? Rosemaryseems to have it well worked out.Perhaps I have become set in myways. I have maintained that disposalof used appliances is harder for menbecause there is never a bin for

Readers’ Replies about Pouch Disposal...

The article on disposingof used appliances on

page 34 of the lastissue of Tidings

prompted three of ourreaders to write in with

their own views andexperiences

on this issue.

3 4 | T I D I N G S | W I N T E R 2 0 1 2

H E A LT H R E A D E R ’ S R E P L I E S P O U C H D I S P O S A L

clinical waste in the Gents loo,whereas there is in the Ladies, usually.However, all of us are different andthere is often a considerabledifference in what we have to dealwith. Those with a colostomy and areasonable length of large bowelwhich will remove a lot of the liquidfind that their output is fairly wellformed. Those with an ileostomy andno large bowel or those with a rightsided colostomy and very little largebowel find that their output is more orless totally liquid. And these are twovery different things to deal with. Ihave a right sided colostomy andliquid output. A lot of the ileostomyand right sided colostomy patients willuse a drainable pouch. This is notsomething that I have ever been ableto face up to. I use a two part system,flange and pouch with sealedpouches. And I have always laid asmall plastic bag – as provided by thedistributor – into the sink and placedthe used pouch into this. Now I needto get rid of the plastic bag and theclinical waste contents so I need anappropriate bin which is why I willinvariably be in the disabled loo.

However, what if I were to adoptRosemary’s method of emptying thepouch down the loo, I suspect I wouldstill have to use a plastic bag becausewith a liquid output the pouch willnot sit in the sink or on a flat surface,it will collapse and the contents willrun out, as has happened many timeswhen I have had to balanceeverything precariously on the loo seatin the Gent’s lavatory – the clearingup being time consuming andrequiring miles and miles of loopaper, tough if it’s dispensed sheet bysheet, rather than on a roll. Butassuming I used a plastic bag in thesink for this, made my change to thenew pouch and then took the usedpouch to the loo, emptied thecontents (cutting a pouch containingliquid is asking for trouble, so wewould just empty the contents out ofthe hole at the top) and rinsed itthrough by holding it under the flush,

I would have a good deal less of aproblem disposing of a slightly soiledplastic bag and the used pouch. Thepouch would go into the plastic bagand I could find a bin at leisure. Therewouldn’t be the pressure to dispose ofthe used pouch and contents in itsplastic bag as in the past. True itwould be a good deal messier thanmy current system and there wouldbe more ‘involvement’ from me,something I have always tried to keepto a minimum – pouch off, into plasticbag, a few wipes and new pouch onagain - is about as close to disposablewaste as I want to get, but doingthings the Rosemary way I would endup with less of a disposal problem. Atone time I had considered a flushablepouch, until a nurse pointed out thatthis might not be a good idea giventhat the flushable pouches dissolve inwater and my output being liquidmight well dissolve the pouch. Theconsequences of that don’t bearthinking about.

Using Rosemary’s method for mewould involve a good deal more faffat the point of changing but a gooddeal less worry about the disposal. SoI will give it a try. You might wonderwhy I haven’t just got on with it. Wellit’s like anything in this stomabusiness, change is always a bit of aworry. We are all resistant to change,after all our tried and trusted systemworks. So I will build up to it. I will letyou know how it goes.

Duncan WellsCA Trustee

Readers’ Replies about Pouch Disposal...

Helpful Ostomy SupportGroups & Organisations...

• IA The Ileostomy and Internal Pouch Support GroupFreephone: 0800 0184 724www.iasupport.org

• UA Urostomy Association Tel: 01889 563191www.urostomyassociation.org.uk

• IOA International Ostomy Associationwww.ostomyinternational.org

• Gay OstomatesEmail: brian@gayostomates.orgwww.gayostomates.org

• Stomadata & Stomafrwww.stomadata.comwww.stoma.fr

• Macmillan Cancer SupportTel: 0808 808 00 00Mon - Fri: 9am - 8pmwww.macmillan.org.uk

• Crohn’s and Colitis UKTel: 0845 130 2233www.nacc.org.uk

• The Gut Trust(Irritable bowel syndrome)Tel: 0114 272 3253www.theguttrust.org

• Bladder and Bowel Foundation(B&BF) Formerly Incontact and ContinenceFoundationGeneral enquiries: 01536 533255Web:www.bladderandbowelfoundation.org

• Bowel Cancer UKTel: 020 7381 9711Email: admin@bowelcanceruk.org.ukWeb: www.bowelcanceruk.org.uk

• Beating Bowel Cancer UKTel: 08450 719300 (Lo Call rate)Web: www.beatingbowelcancer.org

NATIONAL KEY SCHEMEHow to obtain a key to gain access to toilets for the disabled

Colostomates are entitled to a key which will open 8,000+ locked toilets around the UK.Some local councils will provide this key free, or for a small charge.

Keys can be obtained from the Colostomy Association at cost of £3.50+VATContact head office: 0118 939 1537 for an application form.

Keys can also be purchased for £3.50+VATfrom RADAR: Tel: 020 7250 3222Web: www.radar-shop.org.uk

From RADARNational Key Scheme Guide 2011 Price: £16.99 incl. delivery

98% AGREE

“Fits my body’s

contours

*

”

The information you provide to us will be used to process your orders and for general administrative and record-keeping

purposes. We will only disclose your personal information (including details of the products you have purchased from us)

to carefully selected third parties who provide services to us and/or if required by law. By submitting your information to

us, you consent to Coloplast using your information in the manner described above and to us contacting you by email

and/or telephone and/or post in order to keep you informed of Coloplast products and services that we think may be of

interest to you. If you would prefer that we do not contact you in these ways, please let us know by calling us on

0800 220 622.

Coloplast Limited. First Floor Nene Hall, Peterborough Business Park, Peterborough. PE2 6FX

The Coloplast logo is a registered trademark of Coloplast A/S. © 2011-09 All rights reserved Coloplast A/S, 3050 Humlebæk, Denmark.

The colostomy appliance that follows every

body movement

SenSura Mio fits individual body contours and follows your body movements.

Whether you are bending down, stretching or twisting, this colostomy appliance

maintains a secure fit thanks to the elastic adhesive. So you can feel secure.

Watch a video with

users’ reactions to

trying SenSura Mio.

Sign up for free samples of SenSura Mio

on telephone 0800 917 8641

“It has given me the best confidence I could ever ask for”Vanessa, SenSura Mio user, UK

www.sensuramio.coloplast.co.uk

*Source: Product evaluation results DK, UK, FI, NL, CH. Total respondents: 218

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ed trademark of Coloplast A/S. © 2011-09 All rights register

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ough. PE2 6FX

eserved Coloplast A/S, 3050 Humlebæk, Denmark.ed trademark of Coloplast A/S. © 2011-09 All rights r

. By submitting your information to

us, you consent to Coloplast using your information in the manner described above and to us contacting you by email

oducts and services that we think may be of

efer that we do not contact you in these ways, please let us know by calling us on

3 6 | T I D I N G S | W I N T E R 2 0 1 2

S P E C I A L I N T E R E S T L I F E S T Y L E

Ostomates represent just

1% of the disabled

population in this country

so perhaps it is not

surprising that we have

been designed out of 100%

of the disabled lavatories!

That’s if we can actually get

into one in the first place,

given that councils (and

RADAR even) hand out the

keys to drug takers,

wastrels and vagrants. Do

you have to prove that you

are disabled to get a

RADAR key from the

council? Do you have to

have a note from your

doctor? Does the disabled

person have to be the one

applying for the RADAR

key? No. No. And No. Most

councils will accept the

word of any citizen who

says they need a RADAR

key for a relative or friend

who is disabled. Hand over

your two quid and now

that’s another fraudster

preventing a legitimate user

of the disabled lavatory

from gaining access.

And when you do gain access, what doyou find? Is there anywhere to hangyour coat? No. Is the basin areasonable size? No. In fact ourbreakfast bowls at home are larger. Arethere any flat surfaces to lay out yourpouch, wipes and so forth? No. Is therea place to leave clinical waste? Yes.Thank goodness. Because as a man thatis why I have to go to the disabled loo.

There is nowhere in the men’slavatories to leave one’s waste bag andyou can’t in all conscience leave it onthe floor in the cubicle. That’s not theonly problem with the ordinary lavatoryof course. It is very difficult to lean overthe lavatory with the seat closed andeffect the process of a change. Andthen there is always the possibility ofdisaster. My stoma invariably decidesthat exposure to the fresh air is a callto action. With a sink the consequencesare not so bad. In a cubicle and usingthe closed lavatory seat on which toplace pouch, plastic bag and wipes, theconsequences are catastrophic. >

Disabled Lavatories

From this........... to this, in 8 weeks

After switching, this colostomist’s skin healed within eight weeks and the wafer containing extracts of Aloe Vera helped to soothe her sore skin.

For free samples or further information, please call

FREEPHONE 0800 626388 (UK)/1-800 408508 (Ireland)

or visit www.saltsstomacare.co.ukWITH ALOE EXTRACTS

Conventional wafers can crease causing leaks and sore skin

Confidence® Natural with Flexifit® has five sides that conform to your body’s natural contours

Confidence® Natural with Aloe ExtractsPart of the Perfect Fit range with Flexifit® Technology

Also available in 2-piece

Harmony® Duo

WATCH IT WORK

helps stop leaks and sore skin

ntional wafers cang leaks and so

ease Conventional wafers can cre skin causing leaks and sor

helps stop leaksand sor

helps stop leakse skinand sor

helps stop leakse skin

this...........om Fr

and sor

in this, to this...........

e skinand sor

weeks8 your

e skin

® Natural with Flexifit

s natural co’s

encee sides that con

r body’

Natural with Flexifit®

has five sides that conform tos natural contours

After switching, this colostomist’within eight weeks and the wafer containingextracts of Aloe V

e skin.sor

s skching, this colostomist’’swithin eight weeks and the wafer containing

era helped to sof Aloe VVe

s skin healedwithin eight weeks and the wafer containing

era helped to soothe her

ConfidencePart of the Perfect Fit range with Flexifit

Confidence® Natural with Aloe ExtractsPart of the Perfect Fit range with Flexifit

Natural with Aloe ExtractsPart of the Perfect Fit range with Flexifit® echnologyTTe®

Also available in 2-piece

Harmony

Also available in 2-piece

Harmony® Duo®

TCH IT WORKAWWA

OEWITH AL

ee samples or furFor fr

FREEPHONE 0800 626388 (UK)

TSAC EXTROE

ther informaee samples or fur tion, please call

-800 408508 (Ir1/FREEPHONE 0800 626388 (UK)

or visit e.co.uk.saltsstomacarwww

tion, please call

eland)-800 408508 (Ir

e.co.uk

3 8 | T I D I N G S | W I N T E R 2 0 1 2

So that’s why we are in the disabledlavatory, with the new pouch balancedprecariously on top of the sloping topof the hot air hand dryer, the wipesstuffed behind the tap in the sink andthe plastic bag in the sink itself. One’sjacket? Ah, well that’s lying on the floor,inches away from some rathersuspicious looking liquid which appearsto be creeping slowly towards it.

Things could be worse though. Haveyou come across the new disabledlavatories on the trains, the ones withthis enormous semi circular door? Youpress the button and it opens to reveala cavernous interior. And they open infull view of the other passengers in thecarriage, all 36 of them. I was facedwith one of these the other day. I amstanding up straight, no wheelchair,holding an overnight bag in one handand my laptop in the other and thepassengers watch this apparently ableperson enter the disabled loo. Youhave to remember that having anostomy, qualifies you as officiallydisabled according to the DisabilityDiscrimination Act, only the passengersdon’t know that. I pressed the buttonto shut the door but it didn’t move.There I am standing in the disabledlavatory in the full glare of the criticalpassengers. So I put down my bagsand shut the door manually. It was abig heavy door and I am sure theythought I was taking a dreadful liberty.Then I noticed that the sink was slightlyrecessed under a counter. I placed abag in the sink and as I withdrew myhand so a blast of hot air blew the bagout of the sink onto the floor. Not avery good start.

With the bag back in the sink Iremoved my hand and set off a greatgush of water. I put my hand back intothe sink to remove the bag from itswetting and received a splat ofsomething liquid. Soap I discoveredwhen I pulled my hand back. Greatthat’s all that ostomists need, anautomatic hand wash basin. Bykeeping my hands down low asthough playing the piano in a very flatmanner I managed to get by withoutsetting off the sensors. Then of courseyou exit the disabled loo and find thatthere is someone in a wheelchair withtheir helper waiting to go in. And theyare incandescent with rage that youwho are apparently able bodied shouldhave held them up.

And this business of having automaticwater is becoming more and morepopular. I have discovered this atseveral airports. Oh yes they have theautomatic taps but do they haveanywhere for you to hang yourjacket? No. Any flat surfaces? No. It’snot asking much. All we want is coathooks, flat surfaces, larger sinks andno automatic, water, soap and hotair. Or at least the ability to turn theautomatic to manual to using a cabincrew expression. Oh and that’sanother thing, have you ever triedchanging in an airplane loo? It’sinteresting to say the least.

But all this is to suggest that life forthe ostomate is difficult out in the bigwide world. It isn’t really because weare a resourceful lot and we manage.It would just be nice if facilities likedisabled loos which are supposed tocater for us, actually did cater for us.

To this end, design researcher Jo-Anne Bichard has been investigatingthe design of publicly accessed toiletswhich includes disabled toilets andshe has completed a number ofstudies recently into what ostomatesrequire from disabled loos.

It has been established that;A clean shelf to lay out suppliesAppropriate bins for disposal ofpouchesFull length mirror to check self afterchangingPaper towels to dry stomaCoat hook to hang coats and bagswere key design requirements. Addedto this management issues that neededto be considered included;Good cleaning and well-maintainedsupply of toilet roll and paper towelsHot waterToilets well signed and located in easyto find places to be accessed in anemergency.

At this stage these appear to be justproposals but the aim is to make thempart of the British Standards andBuilding Regulations. At the same timelocal authorities are being encouragedto make service provision informationmore transparent and readily availableand this is being realised through aninitiative called Open Data, to whichthe public has access. So we can nowsee what provision local councils aremaking for public toilets. And there is a

website – ‘Google’, The Great BritishPublic Toilet Map - where you can lookup your nearest public toilet, althoughat present it only covers London and Ifound the site rather creaky.

In time there may be greater provisionfor the ostomate in disabled loos.There’s only one stumbling blockthough. Many providers of disabledloos do not include a shelf due to fearsthat it will be used for illegal substanceabuse. So the very thing we require, isthe very thing that the providers arereluctant to provide. And that’s wherethis article started, if local councils andRADAR actually had a proper vettingprocess for those requiring RADARkeys, such as a doctor’s certificate, theywouldn’t be handing keys out willy nillyto the recreationally drug dependantand we could have our shelf.

Duncan WellsCA Trustee

S P E C I A L I N T E R E S T L I F E S T Y L E

CHOICE OF 24-HOUR HELPLINEOR CUSTOMER CARE CENTRES

CHOICE OF ANY MAKE OR MODEL OF STOMA PRODUCTS

CHOOSE PRESCRIPTIONDELIVERY SERVICE OR EPS*

CHOICE OF WIPES,HAND GEL AND DISPOSAPACS

CHOOSE OPTIONAL POUCHPRE-CUTTING SERVICE

CHOOSE TO ORDER BY POST,EMAIL OR PHONE

CHOOSE FREE NEXT-DAY DELIVERYAT TIMES TO SUIT YOU

CHOOSE FREE VISITS FROMSTOMA NURSES AT HOME

MEDILINK IS FIRST FOR PATIENT CHOICEAnyone can offer free, next-day delivery. It’s our commitment

to patient choice that makes Medilink so popular. You

can choose any make or model of products; choose

how to receive your care – over the phone, face-to-face

in our customer care centres or at home with our stoma

care nurses; and even choose how to order – our new

Electronic Prescription Service means you can get the

products you need, when you need them.

Find out more on 0800 626388 or visit www.salts.co.uk/medilink

Your link to better care

SA

LTS

*When your GP is able to transmit prescriptions electronically

4 0 | T I D I N G S | W I N T E R 2 0 1 2

Y O U N G O S T O M A T E S B R E A K A W A Y

Donate online via:

http://www.justgiving.com/breakawayvisits

Write to us or senda donation to:

BreakawayPO BOX 7982SwadlincoteDE11 1FB

More informationabout Breakaway...

Telephone: 07903220040Email: info@breakaway-visits.co.ukWeb: www.breakaway-visits.co.uk

Ainsley writes...Hi, my name isAinsley and I’m 18 years old. I wasdiagnosed with Ulcerative Colitiswhen I was 15 and had to havesurgery to form an Ileostomy aroundsix months after diagnosis.

After my surgery getting used to thestoma was very difficult howeverBreakaway helped with differentaspects of coming to terms with it.

Now I am a Ski Technician and aSnowboarding Instructor at my localdry ski slope, I have been rockclimbing, jumped off a 30ft waterfall,went on holiday with my friends thissummer and much more, the point isI don’t let having a stoma stop medoing anything!

I enjoy being involved withBreakaway, helping out at the events,going to conferences and doingpresentations to raise awareness ofthe charity.

Joshi writes...My name is Joshi and Iam 18. At the age of 11 I wasdiagnosed with UC and when I was13 I had surgery to form an Ileostomy.Life was quite daunting for a while.

Finding Breakaway and the supportthat was offered really changed myperception on life with a Stoma. I feltbetter able to cope with growing up –amongst others that understood. Ibelieve that peer to peer support isinvaluable for young children andteenagers dealing with the challengesthrown at you by this sort of surgery!In my role as Breakaway Buddy, Irepresent Breakaway at open days toraise awareness. I have deliveredpresentations to patients, surgeons,and paediatric nurses about my lifegrowing up with a stoma, and thebenefits of Breakaway. I attend all the

Breakaway events that I can to helpout and to help the teenagers withany questions that they may have, andshow them that you can do everythingthat your friends do, I have!

I have recently just moved away toUniversity in Bath, to study computerscience, but I will continue to supportBreakaway in any way that I canaround my studies. This charity isamazing and I am proud to be aBreakaway Buddy!

Hannah writes...Hi, my job is being aBreakaway Buddy. I like being aBreakaway Buddy because I get tohelp and be involved.

I know what it is like for those whohave a Colostomy, Ace or aMitrofanoff as that is what I have hadand still have two.

As a new born baby I had aColostomy. That was until I was one.For the next four years I didn’t haveanything. When I was five I had anAce. Two years ago I had a Mitrofanoff.

After all that I am fine, and know thatI can do everything that my friends do.Being a Breakaway Buddy means thatI can ensure people who are scared orupset have someone to talk to thatknows how it feels.

“Breakaway five years on...has now completed 11 residential weekend activity breaks, withmany more in the pipeline for 2012. Breakaway is able to link families together on a locallevel. To see the impact that we’ve made on the children’s and parents’ lives is humbling.Breakaway will continue to grow, we have lots of exciting plans in place for next year…wemay be five years old but this is really just the very beginning.”

Julie Bastin - Founder and Trustee writes...

Meet thebreakawaybuddies – youngambassadors forthe charity...

Breakaway Buddies – Are there tosupport, befriend and mentor childrenwho attend breakaway events..

From Left to right: Joshi aged 18,Ainsley aged 18 and Fergus aged 16...support Hannah aged 10.

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4 2 | T I D I N G S | W I N T E R 2 0 1 2

C H A T B A C K

Readers’ writesWhy not write or email the Editor of Tidings with your thoughts, experiences or hints and tips...

Dear Editor

My bag is about ten years old. In thattime I have visited China, NewZealand, America, Canada andseveral European countries. I check-in on line and get the exit rowwhenever I can. Failing that I go forthe two seats at the back of theplane.

I have had no problems at airportsecurity though I was patted down inWarsaw and asked, 'What is that? ' Iwas cross and tired and I justanswered, 'A bag of s..t!' and thatwas that. Naughty I know.

As far as insurance is concerned, AAwill give annual travel and holidayinsurance up to age eighty at a veryreasonable price. Last yearWorldwide was around £250 and thisyear Europe Only around £150. (Butdo note it also covered me for themany holidays I have had in thiscountry too. Since retirement, wehave been going to a cottage inCornwall, for three weeks four timesmost years.) However, for the firstfive years it did not cover anything todo with cancer but that was noproblem. This is my last year as I amreaching that eightieth milestone soafter next August I will have tosearch elsewhere.

Best wishesM.D. (Ms)

Dear Editor

Reading through the articleParastomal Hernias in the Autumnissue of Tidings, I was somewhatintrigued by the letter included fromM Hemadri .

In that letter he advocates situatingthe stoma at the “belly button” (mywording).

I can understand his reasoning andthe statistics that he quotes for sucha procedure. However, I wonder if hehas performed any research into thesubsequent comfort, etc ofostomates for whom this techniquehas been employed.

My stoma is located rather high upbut not quite as high as this wouldrequire. I am quite happy with mystoma but there are occasions whenits position can cause a littlediscomfort. Fortunately (?) my daysof serious gardening are now over,so prolonged bending is no longer aproblem. More importantly, however,is the fact that I am unable to wear abelt or anything tight fitting aroundmy waist. I imagine that this couldbe something to be experienced bythose treated in such a way.

I would be interested in other viewson this aspect.

Thank you for producing such aninformative magazine with such avaried selection of articles.

Best wishesB.W. (Mr)

Dear Editor

My emergency colostomy operation,a Hartmann’s Procedure, wasperformed in May 1998, the result ofan undiagnosed hole in my bowelfollowing gynaecology lasertreatment for adhesions. I developedsepticaemia and peritonitis and wasadmitted to I.T.U. My husband wastold I had a 50/50 chance of survival– a unique gift for his 51st birthday.But I did survive, even though Istayed another ten weeks in hospital,suffered a second bout ofsepticaemia and spent a couple ofmonths further, confined to homewith district nurses calling.

I have Behcet’s Disease,(www.behcets.org.uk) which affectedmy healing. My wound became sobadly infected that it wouldn’t healdespite every treatment the doctorstried. Eventually I was sent homewith all stitches removed and toldthat in time, the gaping woundwould somehow draw together. Thisapparently had been the case withmany soldiers who were woundedduring the First World War. God blessMother Nature – it did eventuallyheal!

Thirteen years on and I am not apretty sight. I have developed a largeparastomal hernia and severalothers. I have virtually little or nomuscle wall between my hip bones.There is no possibility of repair orreversal as I have been told byspecialists that I am unable to haveany tummy operations unless it’s tosave my life.

I became aware very early on inhospital, that my rectum was quitefull and I felt the need to use thebed pan. The desire to strain wasaccompanied by pain and profusesweating. But despite all my effort Iwas unable to clear my rectum.

As the weeks wore on, the attacks ofpain and spasm eventually clearedthe solid matter but I was by thenpassing mucus discharge andsuffering continual infections. I sawseveral doctors and specialists whodiagnosed it as some kind ofproctitis. I have tried suppositories,enemas and pills, none of whichhave had any effect on the problem.I now accept this as part of my life.

I did, however, get referred to mycurrent specialist who has helpedconsiderably. He admits me to DaySurgery every few months for a rectalflush out, which, although it hasn’tstopped the discharge, has stopped

T I D I N G S | W I N T E R 2 0 1 2 | 4 3

the recurrent infections andblockings I was experiencing in theearly days. The spasms are far lessfrequent and intense but the oddone still stops me in my tracks. Thedischarge is now constant butfortunately my anal muscles currentlywork quite well so accidents are fewand far between.

Yours truly,J.H. (Mrs)

Dear Editor

I have been receiving the Tidingsmagazine for just over two yearsfollowing my Colostomy in February2009. I have found the contentinformative, inspiring and to behonest at times a little, shall I say,concerning, when I read about thetraumas and difficulties that somecolostomates experience followingtheir operations and what they haveto endure when living with theircolostomy. I count myself veryfortunate in many respects bothbecause my colostomy andsubsequent ileostomy gave me veryfew problems, with the exception ofthe dreaded “Pancaking”, and nowbecause I have recently had a verysuccessful, albeit rather prolongedand at times traumatic, reversal.

The main point of my e mail is ofcourse to advise you that I no longerrequire the services and support ofthe magazine and the wonderful CA.I also have to say that on myresearch in to the reversal on theinternet and also on your ownwebsite I found a lot of very negativeopinions/reports. When the timecame for what was the first of twooperations I nearly backed out andcoming round following that firstoperation wished I had. But I had abrilliant surgeon and today I have tosay I feel as good as new and countmyself amazingly fortunate.

I would like to thank you all at theCA for your support and keeping meso well informed over the past twoyears.

With very best wishes for the futureKindest RegardsL. P. (Mr)

Dear Editor

I am writing about Dale Kennett'sletter in the last Tidings concerningrectal pain.

I have spoken with my surgeonabout the same thing, and he toldme that the rectal stump stillsecretes mucus even when no longer“in use” and this mucus sets likerock causing the pain. He advisedme to empty the rectum regularlywith suppositories which is theconclusion Dale came to on his own.My problem is that I used tomanually evacuate due to my MSand was causing damage, hence thecolostomy, and even with the help ofa suppository I need to manuallyevacuate which is still a problem.

Regards D.A. (Mr)

Dear Editor

I am a colostomate of twelve yearsand had numerous balloonings andleaks, so a scientific approach wasrequired. After a lot of experimentationI discovered the best method thatsuited me was as follows:

Place your new bag next to your skin(under a vest or shirt) and leave forapprox 3 – 5 minutes whilstpreparing your stuff. Next take thewarm bag and mould to shape,either concave or convex. Then placeback against warm skin.

Remove old bag, clean the site with

baby wipes. The lanolin type stopsthe skin from going red and chafing.Dry thoroughly with toilet tissue.Wipe the stoma site with a silicone-based wipe, which not only coats theskin but also assists in adhesion.Allow a few seconds to dry.

Bend new bag in half and fit bottomhalf first, followed by the top half.Now smooth down in circularmotion starting from the middle,working outwards. Tidy up. Job done.

Best regardsP.H.M. (Mr)

Before acting on suggestions fromother ostomates you are advised

to check with a doctor or stoma carenurse that this course of

action is suitable for you.

Thank you for your letters and e-mails. Please keep them coming.We will do our best to print them or we

may hold them over for a future issue.

Editing may be required for reasons ofclarity or space. In the interests of

confidentiality we will publish onlyyour initials and not your full name,

unless you give us permission to do so.

If you want to be involved in the nextissue of Tidings magazine

simply drop us a line

via email:associate-editor@

colostomyassociation.org.uk

or write to:Associate Editor

Colostomy Association2 London Court,

East Street,Reading RG1 4QL

Look out for our Readers’Button

to see where readershave contributed to

Tidings

YoursRosemary Brierley

Associate Editor

C H A T B A C K

Readers’PANEL

contributor

Readers’ writes

4 4 | T I D I N G S | W I N T E R 2 0 1 2

S P E C I A L I N T E R E S T C A O P E N D A Y

Last October the ColostomyAssociation as part of its ‘out reach’programme put on another amazingpatient open day event. This time thefocus was the North of England. Leedshad been identified as a centrallocation and Weetwood Hall ticked allthe boxes as a suitable venue. Theevent’s agenda similar to last year’sfeatured aspects of ‘Living with acolostomy at home and abroad’

The response to the open dayinvitation was excellent but as withany organised event you never reallyknow how many people will come,until the day, you can only hope theywill! Everyone in their places waited innervous anticipation and excitementas the clock ticked away to the starttime, the doors opened andattendees began arriving, some hadstayed the night before at the venue.They were greeted by Vice ChairmanErnie Hulme, Richard Bray GeneralManager, Gill Herbert and Jo McKenzieCA office administrators. As at lastyear’s event it was a mini snapshot of individuals involved in andrepresenting the world of stoma care.Ostomates, Healthcare professionals,National patient support groups,Online patient support groups,manufacturers and suppliers of stomacare products brought together in anatmosphere that promoted thepositive aspects of ‘living with acolostomy’.

Sue Hatton, Executive Trustee – thehostess with the mostest – openedthe day in her inimitable style! Sue’swelcoming address discussed theimportance of open days, outlined the

day’s agendaand mentionedthe inevitablehousekeeping. Sue introduced thefirst of the day’s presentations,‘trouble shooting – post operative skincomplications’ presented by Jo SicaSCN/CNS. Jo is an experienced stomacare nurse specialist of some standing,she has travelled globally in her workwith Hollister, written articles onstoma care, held a post on the WCETUK committee and lobbied MPs insupport of her colleagues and patientcare. Jo has kindly provided an excerptfrom her presentation - ‘Post operativeskin complications’ which you canread opposite.

Jo’s presentation gave an insight intoskin care around the stoma with anew colostomy. Jo finished herpresentation and took questions fromthe audience. Sue thanked Jo andsuggested that colostomates chat withJo over the lunchtime break.

Entering the meeting room in hastecame the President of the ColostomyAssociation, Professor Bill Heald OBEhotfoot from Leeds railway station! Alittle background, Professor Bill HealdOBE highly respected in his field isinvolved in advancing surgicaltechniques around the world. He isalso part of the Pelican CancerFoundation, which is based justoutside Basingstoke in Hampshire.Pelican has become a `centre ofexcellence` for sharing life-saving, life-enhancing knowledge and skills withfuture generations of surgeons andcancer teams. Sue introducedProfessor Heald who delivered a

rousing speech around –patient choice and qualityof care – he extolled thebenefits of ‘irrigation’ andrallied the audience calling

on them to be pro-active and getinvolved in supporting the CA, theirown healthcare professionals and theNHS.

Sue thanked Professor Heald formaking it up to Leeds and explainedto the audience that Prof Bill hadbeen her surgeon, and that along withAnne Leppington-Clarke SCN/CNS,they had between them got herthrough her surgery, introduced her to‘irrigation’ and gave her a positive wayforward! Sue also drew the audience’sattention to the poster on ‘irrigation’,which had been accepted andexhibited at the WCET UK Conferencein Liverpool, entitled ‘Improvingquality of life through choice –Colostomy Irrigation’.

After a full morning...lunch wasannounced, a buffet of hot and coldsnacks and an opportunity forinteraction between attendees, guests,CA Trustees and staff, presenters andexhibitors. It had been decided at theplanning stage that the open daywould offer two extended timeperiods one in the morning prior topresentations and one over lunchtimeto give people time to view theexhibits, chat and perhaps make newfriends!

Over eighteen exhibitors attended theCA open day made up of stoma careproduct manufacturers/suppliers andclothing and support garment

Colostomy Association Open Day 2011

onSaturday 15th October 2011 atWeetwood HallConference Centre & Hotel

Otley Road, Leeds LS16 5PS

Your Personal Invitation toOPEN DAY 2011

T I D I N G S | W I N T E R 2 0 1 2 | 4 5

companies. Other exhibitors attendingincluded sister organisations such asIA; unfortunately, UA could not attendthis year. Children’s charity Breakaway-Visits (the only England and Walesbased charity offering residentialadventure activity breaks for youngpeople from 4-18 with bowel and/orbladder diversions and dysfunctionsand their families) was represented byJulie Bastin - Founder and Trustee.Julie’s daughter Hannah helpedregister CA attendees, Carol Hunt andson Fergus also attended.Ostomyland’s Jason Dale came topromote his patient support groupwebsite aided by Sarah Squire (whoappeared on the Spring cover ofTidings). Helen Bracey manned theOstomy Lifestyle stand and LucyRussell CNS/Stoma Care - Norfolk andNorwich University Hospitals NHSFoundation Trust - came to host theCA ‘irrigation’ stand and wave thebanner for ‘irrigation’.

After lunch we were treated to thedulcet tones of voice over artist turnedCA Trustee and presenter, Duncan

Wells who many of you may knowfrom his articles in Tidings and fromprevious open days. Duncan kindlyoffered to write and present ‘travellingwith a stoma’. There is no doubt fromthe many calls and emails that comeinto head office; travel is a hot topicwith colostomates and stoma carenurses. Duncan’s presentation washighly informative and covered...takingenough supplies...travel certificatesand doctor’s letter, airline rules...onboard hand luggage...usefulmedication...and travel insurance!Duncan delivered his presentationwith style, passion and gusto! Suethanked Duncan for his excellentpresentation and asked if he wouldwrite it up for the CA website andTidings.

The last presentation of the day camefrom the enthusiastic and extremelypersonable Mr. Ian Daniels FRCS, VicePresident of the ColostomyAssociation. Mr Daniels like ProfessorHeald is a highly respected surgeonwho specialises in abdominal surgeryand the diagnosis of gastrointestinal

disorders. He is Consultant Surgeon atthe Royal Devon & Exeter Hospital andperforms surgery at The ExeterNuffield Hospital and is often invitedto perform specialist procedures in theUK, Europe and South AfricanHospitals. Ian delivered a fascinatingand inspiring presentation aroundParastomal Hernias. It included patientapproach...meeting peopleunderstanding their needs...planning...pre op...post op...surgical techniquesand much more besides. At the endpeople were queuing in the aisles tospeak to him!

Monty Taylor Chairman of theColostomy Association closed the dayby saying...‘Events such as this reallymake a difference and give those whoattend a firm sense of belonging to acharity that exists to encourage,support and reassure all who are livingwith a colostomy’.

The CA would like to say a BIG thankyou to everyone who attended,presented, supported, exhibited andsponsored the Open Day - we hope tosee you all again this year!

Post operative skincomplications by Jo Sica SCN/CNS

This snapshot aims to give thosenot present at the CA Open Day a summary of the key points of thispresentation...

Having a new colostomy oftenpresents challenges, especially inthe early days. The skin around thestoma can breakdown easily ifexposed to faeces.

In the early days,the stoma can bequite oedematous(swollen) but asthe bowel settles,the stoma willshrink.

It is important to remeasure thestoma regularly and a healthcareprofessional such as a stoma carenurse can show you how to do this.The stoma appliance should fit thestoma snugly; too large and thepouch will leak and too small, thestoma will be strangled, so that thefaeces cannot exit into the pouch.There can be many reasons forexcoriated skin and some of themost common reasons are listed

below;

• A poorlysited stoma• Retracted orshort spoutedstoma • Weight loss orgain• A poorly fitting appliance• A change in the stomal output.

This may be linked to a number offactors including diet or medicationsincluding chemotherapy andradiotherapy, and even depressionand immobility

Any of these can result in leakage,which will cause the peristomal (theskin around the stoma) to breakdown.

Some peopleare allergic orsensitive tocomponents ina stoma skinbarrier and mayrequire aDermatologicalopinion and skin testing.

Leakages from a stoma appliancecan result in a person not onlyexperiencing painful sore skin butcan also lead to social isolation. It isimportant that anyone experiencingany kind of skin complaint shouldnot try and treat it themselves butcontact their nearest healthcareprofessional, ideally their stoma carenurse so that a thoroughassessment can be made andtreatment commenced.

It is not unusual for people to moveareas and no longer be in touchwith their original stoma care nurse.However, when they move to a newarea, it is wise to seek out the localstoma care nurse. The local G.Psurgery or hospital are good startingpoints when trying to find outwhere the stoma care nurse is. Aslong as someone has a stoma, theyshould be known to their localstoma care nurse.

There were numerous questionsand comments from the audienceand it was a good forum to shareexperiences and knowledge. Manypeople approached me afterwardsand asked me about issues such asparastomal hernias, bleeding fromsmall nodules on their stomaknown as granulomas andprolapsed stomas.

Early postoperative odema

Measuring astoma

Allergy from askin barrier

4 6 | T I D I N G S | W I N T E R 2 0 1 2

H E A LT H Y O U R Q U E S T I O N S A N S W E R E D

Dear Nurse

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

Stoma Care University Hospital

of North Staffordshire

Q: I have had my colostomy bag for ayear back from last Easter. I was toldthat the reason for the colostomy op.was that part of my over-long“drainpipe” had died! So I had tohave that bit chopped off. When I firstcame out of hospital my “drains”were working quite normally. Butafter a while, I started to haveIrritable Bowel Syndrome. Now, aswell as IBS I seem to have a weakimmune system so that wheneverthere is a virus flying around italways affects my bowel and I getloose, having to change my bagabout a dozen times a day.

I had been controlling all this bytaking Imodium or Diocalm andsometimes Iron with Vitamin C andeating white rice. This is usually finefor a while but then I get blocked toomuch, and, 3 or 4 times this yearhave had to go to casualty and getun-blocked. I have sometimesmanaged to do this with MovicolSolution – but not always.

My surgeon has told me to stoptaking Imodium – to get me “even”but I find I cannot avoid this if I wantto carry on with my activities. Also Ilike, and do, a lot of walking forpleasure. This weak immune systemas regards viruses started in 1989when I got Post Viral Syndrome.Before that I was hardly ever ill orunwell. I am coming up to 75, andhave no other health problems andam pretty strong constitutionally.

The stoma nurses have been verygood – but they just say ‘takeImodium’ while the surgeon says not

to. So what should I do? The stomanurses also tell me to eat jelly babies,marshmallows but this does not makeany difference.

A: You do not say what dose ofImodium you are taking or how youare taking it. Imodium should betaken 20 minutes prior to food whenyou have a stoma and the maximumdose is 16mgs (8 x 2mg tablets in 24hours). If you find this ‘blocks’ you upit may be worth trying Imodium syrupas you can take smaller doses eachtime. However if your surgeon hassuggested you stop taking Imodium it

may be worth trying something suchas Fybogel. This is taken as a drink (1sachet mixed with a glass of water)twice a day and will help to bulk thestool without constipating, as long asyou drink plenty of fluids whilst takingit. You do need to take it regularly forit to work. I hope this helps and youare able to continue with your activelifestyle.

Q: I was diagnosed with prostatecancer Christmas Eve 2009 andbegan treatment in January. I hadseven and a half weeks radiotherapy.Then in 2011 I was admitted tohospital again with rectal bleeding.Part of my bowel had to be removedas it had been damaged by theradiotherapy and I had a temporarycolostomy which has since beenmade permanent. I lost three stone inweight, but have regained some ofthis and I now weigh 11st 11lbs (myheight is 5ft 8ins). I have acceptedmy colostomy and it doesn’t restrictwhat I eat but I find I do not enjoy myfood and have no sense of taste. Canyou tell me why this is and have youany suggestions of what might help?

A: Quite a few people report thissymptom following surgery, withsome people reporting that they donot enjoy, or cannot tolerate a foodwhich, prior to their operation, theyate regularly and really enjoyed. It isnot unusual for your sense of taste toalter immediately post surgery butmost people find that over a period ofa few months this comes back. Alsoyour appetite may have been reducedafter your operation but again thisshould return to normal within a fewmonths. I’m glad to hear that youhave regained your healthy weightand hope that you will soon be ableto enjoy your food again.

Q: I had an ileostomy in October2009 and until now haven’t had anyproblems. Recently I have beenhaving radiotherapy for a RectalTumour and I have been suffering

Julie Rust became Tidings Nurse inDecember 2004. She has answeredreaders’ letters and e-mails in everyissue which has been publishedsince then. We look forward tomany more years of publishing hervery sound advice.

Your medical questions aboutstoma care management are alwayswelcome and important to us.

Questions received by the Editor or CA are passed to Julie Rust RGN.Dip, N. MSc. CNS Stoma Care toreview and answer. Answers arepublished in the next issue ofTidings.

T I D I N G S | W I N T E R 2 0 1 2 | 4 7

What kind of stoma do you have?

When food leaves the stomach itenters the small intestine, a longcoiled tube about twenty feet long.The last part of the small intestineis called the ileum. If the ileum isbrought out through the abdomento form a stoma (ostomy), this iscalled an ileostomy.

Five facts about an ileostomy• The name comes from combining

the words ileum and ostomy.• It allows faeces to leave the body

without passing through the largeintestine (colon).

• It is usually on the right handside.

• The output tends to be fairlyliquid – the consistency ofporridge or thick soup.

• A drainable bag is used andemptied four or five times a day.

Normally digested food passesfrom the small intestine directlyinto the large intestine or colon. Ifthe colon is brought out throughthe abdomen to form a stoma(ostomy) this is called a colostomy.

Five facts about a colostomy• The name comes from combining

the words colon and ostomy.• It allows faeces to leave the body

without passing through the anus. • It is usually on the left hand side.• The output tends to be formed

and firm. • A closed bag is used and changed

about twice a day.

The above applies in most cases,but there can be exceptions. Forexample, sometimes it may beeasier for a surgeon to create acolostomy on the left hand side.The output from some colostomiesmay be fairly liquid particularly ifonly a small amount of colonremains. Therefore somecolostomates may prefer to use adrainable bag.

Have you got a medical question or a query

about stoma care managementfor Julie?

If so write in and tell us:

Colostomy Association2 London Court, East Street

Reading RG1 4QL

or e-mail your query to:cass@colostomyassociation.org.uk

editor@colostomyassociation.org.uk

Editors CommentNATIONAL KEY SCHEMEHow to obtain a key to gain access to toilets for the disabled

Colostomates are entitled to a key which will open 8,000+ locked toilets around the UK.Some local councils will provide this key free, or for a small charge.

Keys can be obtained from the Colostomy Association at cost of £3.50+VATContact head office: 0118 939 1537 for an application form.

Keys can also be purchased for £3.50+VATfrom RADAR: Tel: 020 7250 3222Web: www.radar-shop.org.uk

From RADARNational Key Scheme Guide 2011 Price: £16.99 incl. delivery

from burning and itching down belowincluding the left side of my tummybut not under my stoma bag. Thisitching was agonizing.

Two weeks after the last treatment,the adhesive on my stoma bagbegan to fail and during the lastweek I have had 4 leaks. My StomaNurse came today and has sorted meout with some new bags to try.My question is, can radiotherapyaffect the adhesion of the bags?

A: Some people do find that duringradiotherapy or chemotherapy theirskin integrity suffers and they need toseek advice from their Stoma CareNurse. There are many differentproducts available and as you haveseen your local Stoma Care Nurse Iwould suggest trying what she hasarranged and see her for a review ifthe problem does not improve.Hopefully now that you havecompleted your treatment theproblem will settle quite quickly.

Q: Having read in Tidings aboutirrigation I began to irrigate 6 monthsago. I had bowel cancer in 2004which lead to my colostomy. As Ihave an enlarged kidney due to areflux action I had to obtainpermission from the consultanturologist. He advised me to only useone litre of water. It has been quitesuccessful but does not entirely clearmy bowel. I would like some adviceas a small hernia has developed andI have some difficulty with waterflowing into my bowel as someescapes initially. I do not know if thisis due to the hernia. I had lots ofproblems with pouches pancaking sowould like to continue irrigating butdo not want to cause any injury.

A: Some patients find that once theyhave a parastomal hernia it is difficultto continue to irrigate as the waterdoes not flow freely into the bowel,as you have mentioned. Obviously Icannot assess the size of the herniaso it may be worth asking for areview by your local Stoma CareNurse to see if there is anything thatcan be done to help to prevent thehernia getting worse or if a surgicalreview is possible with regards torepair. Your nurse may also be able tooffer some support about changingthe technique for irrigating, such as achange of position to help.

Q: I am having trouble with my rectalstump after an ileostomy. I am 2years post op and am having a lot ofpain. I have used suppositories toclear any mucus but with no luck. Anyadvice appreciated.

A: You do not say why you had thesurgery and if there are any plans toreverse the stoma with reconstructivesurgery. If reconstructive surgery, suchas Ileo Anal Pouch Formation(Restorative Proctocolectomy) is apossibility then you will need the analcanal but the rectum will be removedduring this operation. If howeverthere is not any possibility of thissurgery being performed then it maybe worth discussing the potential ofhaving the rectal stump removed. Thisin itself can have implications but areview by your surgeon to discuss thiscan highlight all the positive andnegative points.

Q: I had a colostomy on 7 October2011 for rectal cancer. The stomaside is going well however I amhaving problems with the wound forthe closure of the anus. There is anopening of approximately 1cm and itis leaking and I have to go to thesurgery every day to have the woundpacked and dressed. After all thistime I cannot sit for more than 5 - 10minutes as it is extremely painful tosit. I am having no problems withwalking about, just the sitting, sotherefore find I am spending a lot oftime in bed. I would be keen to knowif you have heard from other peoplewho have experienced this problemand how long it took before thewound healed completely and anysuggestions they might have.

A: You do not say if you had anychemotherapy or radiotherapy prior toyour surgery. It is often this woundwhich causes the most problems forpatients and these can be worse ifyou have had treatment prior to youroperation as healing is slowed down.Continue with the treatment from theDistrict Nurses and maybe ask for areview of your pain relief medicationto see if something can be prescribed.You could also ask your DistrictNurses about some of the specialcushions available to help you to getsome relief when you sit. I have manypatients who report the sameproblem to me but with time I amsure that you will find this problemsettles.

Have you got a medical question or a query

about stoma care managementfor Julie?

If so write in and tell us:

Colostomy Association2 London Court, East Street

Reading RG1 4QL

or e-mail your query to:cass@colostomyassociation.org.uk

editor@colostomyassociation.org.uk

Editors Comment

What kind of stoma do you have?

When food leaves the stomach itenters the small intestine, a longcoil tube about twenty feet long.The last part of the small intestine iscalled the ileum. If the ileum isbrought out through the abdomento form a stoma (ostomy), this iscalled an ileostomy.

Five facts about an ileostomy• The name comes from combining

the words ileum and ostomy.• It allows faeces to leave the body

without passing through the largeintestine (colon).

• It is usually on the right hand side.• The output tends to be fairly liquid

– the consistency of porridge orthick soup.

• A drainable bag is used andemptied four or five times a day.

Normally digested food passes fromthe small intestine directly into thelarge intestine or colon. If the colonis brought out through theabdomen to form a stoma (ostomy)this is called a colostomy.

Five facts about a colostomy• The name comes from combining

the words colon and ostomy.• It allows faeces to leave the body

without passing through the anus. • It is usually on the left hand side.• The output tends to be formed

and firm. • A closed bag is used and changed

about twice a day.

The above applies in most cases,but there can be exceptions Forexample, sometimes it may beeasier for a surgeon to create acolostomy on the left hand side. Theoutput from some colostomies maybe fairly liquid particularly if only asmall amount of colon remains.Therefore some colostomates mayprefer to use a drainable bag.

4 8 | T I D I N G S | W I N T E R 2 0 1 2

On Wednesday 23rd August 1966Betty gave birth to a son. Thepregnancy had been normal, butunexpected. Betty and her husband,Terence, had been hoping for a babyfor more than five years. When itdidn’t happen they adopted a sevenweek old baby girl, Linda. That hadbeen the previous September, but byChristmas Betty knew she waspregnant.

The baby was due on 5th August, butit wasn’t until the afternoon of the22nd that Betty’s waters were broken,and she went into labour. However, byeleven o’clock the following morningit was evident that the baby was indistress so Betty was rushed down totheatre. The gynaecologist had tomake a large incision and use forcepsduring the delivery. He explained laterthat the problem was that theumbilical cord was only twelve incheslong. Andrew was born at noon andtaken to the Special Care Baby Unit.Betty needed stitches – the doctorswouldn’t tell her how many, butrepairing the damage took over anhour.

For several months after the birthBetty needed to use a rubber ringwhen sitting down, but caring for twobabies under fourteen months left herwith little time to sit down. In the lateseventies when the children weresettled at school Betty went back towork as a clerk/cashier. It was aboutthis time that the problem with herbowels began to get worse: she wasalways checking up that there was atoilet not far away. When she told herdoctor about the pain she suffered,and how she often had an urgentneed to open her bowels he referredher to the hospital. Thegastroenterologist she saw said shehad Irritable Bowel Syndrome.

There were days when Betty felt really“washed out” but she still went intowork. Then she changed her job andher new employer wasn’t asunderstanding as her previous boss,so eighteen months later she decidedto retire. Sadly a year later in 1991 herson, Andrew, died from a heartcondition called hypertrophiccardiomyopathy. He was twenty-fiveand his son, David, was only three atthe time.

Over the years Betty’s bowel problemscontinued and in the early ninetiesshe was referred to an incontinencenurse and had to wear pads. In thelate nineties she sought a secondopinion. Her daughter, Linda, camewith her and asked the surgeon if hermother would need a colostomy. Hereplied, ‘Yes eventually.’

So Betty says, ‘When in 2002 I had mycolostomy it didn’t come as a shock.

I’d had time to get my head round itand in a way I felt relieved that theywere finally going to do somethingabout it.’ In hospital when the nurseshowed her how to change the bag,she told him she’d be able to manageherself the next time. She says, ‘It is somuch simpler than coping withincontinence. I feel more in control.’Three months later her family andfriends were all saying how muchbetter she looked.

Betty uses a clear, closed pouch. Shehas tried others over the years, butstill returns to the one she was givenwhen she first had her stoma.Sometimes she uses a drainable bagwhen going on long journeys. Bettylaughs when she recalls how once ona coach trip the only available toilet atthe bus station had a door thatwouldn’t shut and no light. She stillmanaged to change her bag in thedark. >

R E A L L I V E S B E T T Y ’ S S T O R Y

No Regrets...At the CA Open Day in Leeds in October, Betty Rukin said she would liketo tell Tidings her story, to make the point that not all colostomies areformed because of cancer. Betty had her operation to form a colostomy in2002, but the pathway to her colostomy began almost thirty years before.

Betty and Terence Rukin present a TV, DVD and games equipment to Michelle Surrell,Director of Development, at the Forget Me Not Children’s Hospice.

Vitala™ CCD can give you up to 12 hours of freedom without the need for a bag or belt.1a It’s also specially designed to control odour and noise1b. . . so you can enjoy More moments like this.™

When you’re living with an end colostomy, enjoy...

Now, you can focus more on your life and less on your pouch. Introducing the Vitala™ Continence Control Device (CCD).

Vitala™ CCD as worn with the Natura® Skin Barrier

More moments like this™

To learn about Vitala CCD, talk to your stoma care nurse, contact us on 0800 467866 or email vitala.webcare@convatec.com, or visit www.vitala.com.

Please see package insert for complete Instructions for Use for Vitala™ Continence Control Device.

Reference: 1. Multinational Phase III Vitala™ 12-Hour Wear Test. CC-0196-08-A720. June 18, 2010, Data on file, ConvaTec Inc. a Per 24-hour period. b In a clinical trial, 83% of patients reported that the filter prevented odor and 60% reported no noise.1

®/TM indicate trademarks of ConvaTec Inc. ©2011 ConvaTec Inc. AP-011159-MM May 2011

5 0 | T I D I N G S | W I N T E R 2 0 1 2

N O T E B O O K U P D A T E S A N D E V E N T S

Date: 24th March 2012

Venue: M Shed, Princes WharfWapping Rd Bristol

Time: 10am-1pm

Organiser: Stoma Care Depts, BristolRoyal infirmary and NorthBristol Trust

Date: 12th April 2012

Venue: upper Room, ST Paul’s,Darwell Street, Walsall

Time: 1pm-4pm

Organiser: Walsall HealthcareNHS Trust

Date: 21st April 2012

Venue: Level 3, Academic Centre,John Radcliffe Hospital,Oxford

Time: 10am-2pm

Organiser: Stoma Care Dept, OxfordRadcliffe Hospitals

Stoma Care Open Days...

Open days give ostomates the opportunity to meet and shareexperiences with other ostomates. Many people attend with friends andfamily as they are very sociable events.

Open day events are posted on the Colostomy Association website throughout the year...

visit: www.colostomyassociation.org.uk

R E A L L I V E S B E T T Y ’ S S T O R Y

Leaks have been a problem for Betty,and her stoma care nurse said thiswas because her stoma had a moataround it and suggested she try usinga washer to fill in this depressionbefore attaching her stoma bag. Thisseems to have worked.

The reason Betty’s stoma is recessedis because she has a parastomalhernia so she was very interested inthe talk on hernias given by IanDaniels, consultant surgeon and CAvice president at our Open Day inLeeds in October. She wasn’tsurprised when he said that somepeople’s biological make-up meansthey are more likely to develophernias, because even before she hadher stoma she’d already had twoumbilical hernia repairs.

Betty has had two parastomal herniasrepairs one in 2004 and another in2008. In both cases it was a tissuerepair at the site of the hernia, butwith this relatively simple procedurethere is a high risk of the hernia

recurring as Betty knows to her cost.Her surgeon has told her that if heever decides to do another repair hewould have to re-site the stomasomewhere else on her abdomen.

Not only did Betty enjoy the CA OpenDay she also won the prize draworganised by Amcare & Convatec. ‘It’sstrange how things happen,’ saysBetty. ‘The week of the Open Day Iwent to a talk at the Monday Club ofour local church, where I am secretary.The talk was given by the head offundraising for the Forget Me NotChildren’s Hospice in Huddersfield.’

Betty was determined to dosomething to help the charity but wasunsure how to go about it. Then onthe Saturday she won the first prize ofa TV and DVD combo, a Nintendo WiiFit and a Wii Sports Pack. Betty andher husband have donated their prizeto the teenage room at the Hospice inmemory of their son, as this Christmasit will be twenty years since Andrewdied.’

Not long ago Andrew’s son David,asked his grandmother if she had anyregrets about having his fatherbecause of all the problems she’d hadsince the birth. Betty said ‘Of coursenot.’ David replied, ‘I’m glad becauseif you hadn’t had my dad I wouldn’tbe here!’ David’s wife is nowexpecting a baby so in March Bettywill be a great grandmother.

Betty Rukin

Readers’PANEL

contributor

Sash Medical Limited“Woodhouse”, Woodside Road, Hockley, Essex, SS5 4RU.

Freephone 0800 389 3111Website:- www.sashstomabelts.com

• The SASH Stoma Support and Hernia belt is designed and manufactured by an Ostomist and gives support to the muscles surrounding the stoma.

• Eliminates most leakage problems and gives added security and confidence.Ostomists report relief from dull aches and pain in the stoma region whilewearing the belt.

• Used by ostomists with a pasastomal hernia (a bulging around the stoma) thebelt will also help prevent muscle damage and enlargement of the hernia.

• Ideal for work, sports, gardening, housework, DIY or at any time stomachmuscles require a firm support.

• With support from the Sash belt and periodic consultations with a consultantsome Ostomists are delaying, maybe permanently, the need for hernia surgery.

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This lightweight unobtrusive belt is designed tohelp eliminate leakage problems by holding theadhesive section of the pouch against the bodyduring all activities.The belt also gives added security against thepouch becoming detached and will help to supportthe weight of a full pouch

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The Security and Leakage Belt is made of asoft 32mm (1.25”) elastic belt attached to aretaining flange that fits between the bag andthe adhesive section of the pouch.

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The Sash belts are available on prescription and suitable for both maleand female.All belts are custom made from information given on our Order Formand a hole is cut into the belt flange to fit your preferred pouch.No fittings are required. Belts are processed and mailed within twoworking days.For further information and to obtain an Order Form Freephone :0800 389 3111

The Stoma Support and Hernia Belt ismade of a 50mm (2”) non elasticizedwebbing attached to a restrainingflange that fits between the bag andthe adhesive section of the pouch.

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For more information:SASH Woodhouse Woodside Road Hockley Essex SS5 4RU EnglandTelephone: 0044 (0) 1702 206502 Fax: 0044 (0) 1702 206502 Freephone: 0800 389 3111E-mail address: info@sashstomabelts.com Website: www.sashstomabelts.com

Welland Medical Ltd., Brunel Centre, Newton Road, Crawley, West Sussex RH10 9TU United Kingdom.Tel: +44 (0) 1293 615455 Fax: +44 (0) 1293 615411 Email: info@wellandmedical.com Website: www.wellandmedical.com

Welland products are distributed in the UK by Clinimed Ltd. Welland and the Welland logoTM are trademarks of CliniMed (Holdings) Ltd.

Help us to help youDo you want to make a difference? By becoming involved in Welland product development and evaluation, you could help improve the quality of life of other ostomates around the world. Your feedback will help us to continue to design, develop and manufacture innovative stoma care products and accessories.

For more information please contact our Stoma Nurse on: Tel: 01293 848635, email: nurse@wellandmedical.comor visit our website: www.wellandmedical.com

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C O N N E C T I O N S

Marketplace advertise...your events • messages • services here...

Designed by Ursula Naish

For further information please contact:Ursula Naish, 9 Oast Meadow, Willesborough, Ashford, Kent TN24 0ASTel: 01233 640 863ursula.naish@ukonline.co.uk

Ursula Naish designs and producespouch covers and waterproof mattressand wheelchair covers.

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

If you have a product to sell, an event toadvertise or a message to communicate, you canplace a small-ad for aslittle as £20.

Stoma care nurses...if you would like topromote your Stoma Care Department, itsservices and events...for FREE...

Then just get in touch...contact:editor@colostomyassociation.org.uk

Annual Bowel Awareness and Stoma Care Open Day...

This is a health promotion event designed to raisepublic awareness of bowel disease which continues tobe an increasing problem in the West Midlands and anupdate for Ostomists.

Date: Thursday 12th April 2012, 1-4.00pm. Venue: Upper Room, St Paul’s, Darwell Street, WS1 1DA

D O N A T I O N S H E L P U S M A K E A D I F F E R E N C E

Here’s how your donation helps us make adifference...to fellow colostomates

We provide:• An Outreach Programme our own Open Day event

for ostomates.

• Advisory literature, written by colostomates andhealth care professionals.

• A quarterly magazine 'Tidings’ especially written forcolostomates, their families and their carers.

• A telephone helpline 0800 328 4257 manned 24hours a day...every day!

• Over seventy contact volunteers covering the UK fullytrained and experienced, (who are ostomates) thesededicated individuals bring a human touch.

• Patient visiting a volunteer at the request of a stomacare nurse can visit a patient/s before their colostomysurgery, and afterwards in hospital. Home visits canalso be arranged.

• Attendance at organised stoma care nurses 'opendays', that you can visit and where you can learn moreabout your stoma, in a friendly atmosphere and discussany problems.

• Attendance at manufacturers' and suppliers', ‘opendays’ and exhibitions. This allows us to update you onstoma care products, accessories and services via‘Tidings’. Display our literature and chat to ostomates.

• A voice for your opinions at ongoing consultationswith the National Health Service and keeps youinformed of issues that may affect you.

Your donation to the Colostomy Association...will mean we can reachout to other colostomates their families and their carers with support,reassurance and encouragement. With your help we really can and domake a difference - thank you

The Colostomy Association continues...with YOUR help, to give supportand reassurance to both experienced colostomates and those who are new to ‘living with a colostomy’.

Here’s how YOU can continue to support us...simply by making a donation you will ensure oursurvival...here’s how

• Regular Donation: Regular donations can be madevia standing order (see Donation Form overleaf).Regular donations help us to plan ahead and carryout our agenda. Every donation is vital to thecharity’s survival.

• Single Donation: Single donations from individuals,fundraising events are very welcome and greatlyappreciated. So please keep them coming, nomatter how small. Just £15.00 (or more) will helpcover the cost of all our patient services.

• Donate via Telephone or online via our Website:These donations are easy to make...and are secure.Telephone donations are via RBS WorldPay simplycall the Colostomy Association office duringworking hours to donate. To donate online visit:www.colostomyassociation.org.uk

• Legacy donation - A gift in your will: If you areabout to make a will, or are considering making achange to your current will, please consider leavinga legacy to the Colostomy Association. Your legacycould secure the Association’s future and providecontinued support to all those ‘living with acolostomy’ present and in the future.

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Our findings show there are approximately 60,000 colostomates living in the UK and with over 6,400 permanent colostomy operations being performed each year - we need to be here for them!

The Colostomy Association is an independent charityfinanced solely by donations. Your help and supportis now more important than ever in this changing world...

Donation Form

Donation & Standing Order FormThank you for your supportPlease use this form to make either a Regular donation by Banker’s Standing Order or Single donation. Simply completethis form and return by post to the Colostomy Association 2 London Court, East Street, Reading, Berks RG1 4QL.Telephone: 0118 939 1537 if you have any queries.

Registered Office: 2 London Court, East Street, Reading RG1 4QL Registered Charity No: 1113471

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:

Please pay: NatWest Bank Market Place Reading Branch 13 Market Place RG1 2EP

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

the sum of £ amount in words:

Date of first payment: and thereafter on the same day every month/quarter/year)*

(*Delete as appropriate) until further notice. (Please cancel any previous standing order in favour of this beneficiary )

Name: (IN CAPITALS)

Signature: Date: / / 2012

D O N A T I O N S H E L P U S M A K E A D I F F E R E N C E

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Regular donation: I would like to make a regular contribution to the Colostomy Associationevery month/quarter/year in support of the charity. I have ticked the appropriate box below and filled in theamount. I have also completed the Banker’s Standing Order Form (Please tick.)

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

(Please tick.) Yes I would like to make a single donation - My donation is £

I enclose a cheque/postal order form made payable to the C.A. Ltd - Thank you! Yes, I require a receipt (Please tick.)

1

(Please tick.)

Yes, I would like to make a regular donation of £ Monthly Quarterly Yearly (Important: Please tick your preference above.)

2

My Details: Title: Name: Surname:

Address:

Postcode:

Telephone number: Email:

Optional Information: Date of Birth: Reason for your stoma:

Stoma Type: (Please tick) Colostomy Ileostomy Urostomy

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

Note:Please ensurethat we haveyour correct details: full name, addressand postal code thank you

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

I would like the tax to be reclaimed on any eligible donations that I have ever made or willmake to the Colostomy Association until further notice. I confirm that I pay an amount of incometax and/or capital gains tax at least equal to the tax that the Colostomy Association reclaims onmy donation in the appropriate year (currently 25p for every £1 donated).

Signature: Date: / / 2012

Thank you for your gift

To obtain your complimentary samples, complete and return this coupon to:-Pelican Healthcare Ltd Freepost Licence No. CF1933 Cardiff CF14 5GX

call: FREEPHONE 0800 052 7471 or e-mail: contactus@pelicanhealthcare.co.ukName (Mr/Mrs/Miss/Ms): .........................................................................................................................

Address: .....................................................................................................................................................

.............................................................................................. Post Code: ..........................................................

Cohesive SLIMS® (48mm diameter) ❑Ideal for frequent pouch changes and/or everyday skin protection

Large Cohesive® Seal (98mm diameter) ❑Ideal for Urostomists, or to protect a large area of skin around the stoma

❑ Please tick here if you do not wish to hear about relevant new products and services available from Pelican Healthcare.

✁

Pelican Healthcare LimitedSole UK Distributor of Eakin Cohesive® Products

TIDINGS 11/11

● Prevent leaks by forming awaterproof barrier around thestoma

● Completely mouldable toensure a perfect fit every time

● Heal sore and irritated skin

Giving back...Fast forward to 2010. While attendingmy routine stoma review with Mary JoI asked her if there was anything Icould volunteer for. She suggestedthat I could try and set up aColostomy Association group inNorthern Ireland, as there was little orno support structure for colostomateshere.

The seed was sown. I knew I couldn’tcommit myself to the task with anyeffect as I was working full time andmy job involved regular travelthroughout the UK. However, in June2011 I accepted early retirement andcontacted Mary Jo again to let herknow I was now up for the job!

Mary Jo made the initial contacts forme. Among these were Anne Demick,National Secretary of IA (Theileostomy & internal pouch SupportGroup), who is based in NorthernIreland and Ernie Hulme, ViceChairman of the ColostomyAssociation. At the recent Associationof Coloproctology of Great Britain andIreland Conference, Anne Demickspoke to Jane Wood - Editor ofTidings, to see if a meeting betweenCA and myself could be organised. Ihave to say Anne’s advice from a localperspective has been extremelyvaluable.

Following a few weeks of e-mails andphone calls it was arranged for me topresent the CA stand at a patientopen day in Belfast. I had attendedprevious open days as a ‘customer’and this was the first time I would bepresenting the Colostomy Associationto the colostomates of NorthernIreland, it was also an opportunity tocanvass for volunteers. Prior to theevent the CA had sent letters to thoseregistered with them in NorthernIreland advising them that I, a local,would be there.

Ernie Hulme and Rosemary Brierley,both CA Trustees, flew over to Belfastto join me at the open day. Theyexplained the literature and coachedme on the ‘dos and don’ts’. Adrian, afellow colostomate who had receiveda letter and whom I didn’t knowbeforehand, arrived unexpectedly tolend his support which was muchappreciated.

This first open day was organised bythe stoma care nurses of the BelfastHealth Trust and took place in the

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I N C O N V E R S A T I O N R E A C H I N G O U T T O G I V E S U P P O R T

ChrisWright

writes...

about his patient

journey andpassion

to become aColostomy

Association volunteer in

NorthernIreland...

My patientjourney....

For people of a certain agebirthdays seem to have less andless significance than they didpreviously. However when I wasdiagnosed with bowel cancertwo days before my 52nd

birthday in 2007 and advisedI was going to have a permanentcolostomy. It certainly focussedmy mind on my future. Here Iwas with a diagnosis that wastotally unexpected I had to getthrough it. But how?

As I was focusing on theseemingly endless series of tests,scans and things being insertedinto embarrassing places prior tothe operation I didn’t give muchthought to anyone else who mayhave experienced this journeybefore me.

Having had time to mull overthings I realised I did know oneperson who ‘had a bag’, a retiredcolleague I hadn’t seen for someyears who has an ileostomy andlived over 100 miles away in theIrish Republic.

I phoned him after my diagnosisand I was glad I did as he passedon one really useful tip that willstay with me forever, it was,“You’ll make many mistakes, butyou’ll only make them once”.How true.

Another gentleman, a friend ofmy mother’s, visited me just daysafter my operation and as helpfuland kind as he was, I wasn’thaving a good day and didn’thear much of what he wastelling me. Apparently this isquite usual as there is so muchto take in and learn.

Helping me to adapt to mystoma was stoma care nurse,Mary Jo. The advice and supportshe gave me helped me startliving my life anew.

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Ramada Hotel in the city. I wasn’tprepared for how busy it would be.Just meeting such a diverse range ofpeople, ages, experience andattitude – and all in good humour,was both educational and inspiring. Ialso met the stoma care nurses fromthe Belfast Trust who were delightedto see the Colostomy Associationrepresented at their open day.

I had my stoma in a different healthtrust area so I had not met thembefore, but their enthusiasm forestablishing the CA in NorthernIreland reflected that of the nurses Ialready knew. The CA stand generateda tremendous amount of interest andfrom the many conversations I had,there was no doubt that theColostomy Association’s presence wasmuch appreciated. During the courseof the day our first five volunteersstepped forward!

Ernie and Rosemary invited these‘gallant pioneers’ to an informalmeeting when the open day closed tointroduce them to the ColostomyAssociation and briefed them on thebackground of the organisation. Youcould feel the positive charge in theroom as we talked about how wemight go forward and how we couldeach support colostomates inNorthern Ireland. There was no needto drum up any enthusiasm, it wasalready there bursting to get out!

Besides the obvious fact that we allhave a colostomy the other significantcommon experience we had was thatwe had all travelled the journey alone.Our respective stoma care nurses hadresponded to the needs that we nowknow more experienced colostomatescould potentially have provided. Thiswas our inspiration to change the

experience and tosupport, inwhichever way wecan, others new toliving with a colostomy.

A second open day two weeks later atthe Seagoe Hotel in Portadown wasorganised by the nurses in theSouthern Health Trust. My operationtook place at the Craigavon AreaHospital just up the road and I knewthe stoma care nurses, Bernie, Mary Joand Lynn (I mustn’t forget Cheryl whokeeps them organised and attends theopen days too). This was my hometerritory I truly was ‘local’. Ernie andRosemary weren’t there to supervisethis time but Adrian volunteered tojoin me again. It was so good to havehis company to support me on myfirst solo run!

Just as the good folk attending theBelfast Trust open day appreciated thepresence of the Colostomy Associationso too did the colostomates of theSouthern Trust. I even met people Iknew but had not realised they, theirspouses or partners had a stoma. Theday went just as successfully as theBelfast open day and another fourvolunteers stepped up to join thegroup. Their enthusiasm was amazingand so uplifting. We were now ten!

Sheila, a volunteer is a publicrepresentative on Banbridge DistrictCouncil and was able to arrange aroom in the council buildings for ourfirst get together.

This happened in November a fewvolunteers were unable to make itdue to prior commitments. Thoseattended were Mary, Sandra, Wilma,Sheila and Adrian, stoma care nurses,Mary Jo and Lynn, from the Southern

Trust and Audrey, from the Belfast Trust.

I had made a prior round of visits tothe local newspapers to promote ourcause and to make any colostomatesin the area aware of what we weretrying to do. The local press were an‘open door’ and they carried detailedarticles about Sheila and myself withphotos and contact details, they alsodispatched photographers to our firstgathering.

I wrote this article oneweek later and to date I

have received e-mails from other

colostomates seekinginformation on how to getinvolved. I was contacted bythe local Tesco’s CommunityChampion representativeoffering the use of their

rooms for future get togethersand promotions. We are

beginning to feel some firmground.

As our first gathering was not fullyattended a second one at my formeremployer’s HQ, the Royal Mail Centrejust outside Belfast will have a fullturn out of volunteers and stoma carenurses.

A volunteer training package is now inthe pipeline which can cater for up to20 volunteers and I am hoping wecan ‘recruit’ additional experiencedcolostomates from other trust areaswhich will give us a geographicalspread of CA volunteers across half ofNorthern Ireland. A bit of a challengebut achievable. I now want toconsolidate our first group of CAvolunteers and begin to directinvolvement with the charity.Eventually it would be terrific to seecolostomate support groupsestablished across Northern Ireland,all taking care of their own localissues, and if I can help them getstarted then I am happy to usewhatever time and energy I have forthat.

Mary Jo did a brilliant job helping memanage my stoma. I really understandand appreciate just how much sheand other stoma care nurses give totheir patients. I’m ready with myknowledge and practical experiencesto give support to other colostomates.

The experience and enthusiasm ofcolostomates is out there, so let’sreach out to find them and in doingso find volunteers who can join in andsupport those ‘living with acolostomy’.

Local Colostomy Association Volunteers pictured at their meeting in BanbridgeCivic Building Co. Down, from left: Sandra McAllister, Audrey Steele, Stoma CareNurses Mary Jo Thompson and Lynn Berry, Adrian Ewing, Wilma Jackson, Mary Quinn, Sheila McQuaid and Chris Wright

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S U P P O R T G R O U P S I N Y O U R R E G I O N

Information about Support groups is regularly revised.If you know of a support group not mentioned in ourlistings please get in touch...e-mail: editor@colostomyassociation.org.uk

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

Stoma support groups in your region...

ScotlandMidlothian:GOSHContact: Alex Topping 01501 772154Maggie’s Edinburgh TimetableContact: 0131 5373131

Glasgow:Glasgow Stoma Support GroupContact: Maureen O Donnel 01236436479 or Charlie Sutherland 01698822075

Ayrshire:North Ayrshire Stoma SupportContact: Jim 01292 220945Stoma Care and Recovery (S.C.A.R)Contact: Rhona 01294 557478 orMaggie 01294 271060 or Mob 07817736147

Fife:Fife Ostomy Support GroupContact: Ishbel Barr 01592 772200

England - NorthCheshire:I.C.U.P.SContact: Stoma Care Nurse0151 604 7399Cestrian Support Group Contact: David Burgham 01244310461Countess of Chester HospitalContact: Julie Clements 01244 366170Drop in ClinicContact: Angela Perks/DeborahSingleton 01625 661598Stockport Support GroupContact: Angela Simpson 0161 4195059TOMAS (The Ostomates ofMacclesfield and Surrounding Areas)Contact: Kath Wood 01625 875442Warrington Ostomy Support GroupContact: Jane Shaw 01925 662103

Cleveland:Oops GroupContact: Julie Morrisroe SCN/CarolYounger 01287 284113

County Durham:South West Durham Ostomy GroupBishop AucklandContact: Betty 01388 814535 Colin01388 773757 Jen 01325 311266Maureen 01388 818267

Derbyshire:Stockport Support GroupContact: Angela Simpson0161 419 5059

Lancashire:Oldham Stoma SupportContact: June Wilde 0161 678 7086Trafford Bowel CareContact: Jackie Carey (Secretary) 01617489 659 Doreen 0161 9627 818John 0161 7484 655

Merseyside:Crosby Support Group Contact: Barbara Percy 0151 5292842(Afternoon)Aintree Stoma SupportContact: Carmel/Pauline 01515292842 (Evening)

Northumberland:Northumberland Cancer SupportContact: Pat Fogg 0191 4102679

Teeside:Bowel Cancer Support (Semi Colon)Contact: Mr G Dickson 01642 563747Pat Brydon 01642 897903

Tyneside:Gateshead Health NHS Trust (Stoma drop in clinic)Contact: Sister Heather Wilson 0191 487 8989 Ext 2221NHS Molineaux CentreContact: Lesley Brown 0191 219 5656Royal Victoria Infirmary Support GroupContact: Gordon Weatherburn 0191 234 1109Yorkshire:Airedale Stoma SupportContact: Jenny Shaw 01535 652516or Sue Hall 01535 210483

Behind You (Calderdale& HuddersfieldBowel Cancer Support Group)Contact: Michelle Speight 01484 355062

CROPS (Colo-rectal ostomy & internalpouch support)Contact: Gloria 0114 2879503 Dewsbury & District OstomyContact: Janet/Eileen 0844 8118110Rotherham Ostomates Caring SupportContact: CA for details 0800 328 4257Scarborough Stoma SupportContact: Sister Jean Campbell 01723342388 Amanda Rowe 01723 342446The Hull and East Riding ColostomySupport GroupContact: Pete Smith 07989 565335and Pete Rennard 01482 793966

Isle of Man:Stoma Support GroupContact: Carole Cringle 01624 650212

England - CentralBuckinghamshire:Milton Keynes Stoma AssociationContact: Bruce Pollard 01908 582563

Leicestershire:Moving on (Leicester Royal InfirmaryColorectal Support group)Contact: Wilf Patterson (Secretary)01455 220344

Nottinghamshire:Nottingham Colostomy, Ileostomy &Urostomy Support GroupContact: Rosemary Brierley 0115 982 7868Nottingham Stoma Support Contact: Mrs B Heath 0115 966 3996North Notts Stoma Support Group(Sutton-in-Ashfield) Contact: Tore and Nicky Norman01773 715460

Shropshire:Oswestry Stoma Support groupContact: Carole O’Ryan 01691 671624

Staffordshire:OutlookContact: Ernie Hulme 01782 324441Joan 01782 710828

Worcestershire:Kidderminster & District CollossusSupport GroupContact: Brendon Drew 01299400843

T I D I N G S | W I N T E R 2 0 1 2 | 5 9

West Midlands:Colostomy GroupContact: Diana Wick 0121 4242730Coventry Stoma SupportContact: Martin Robbins02476402616Newhall Stoma Support GroupContact: Sarah French 07773 39623602476402616

England - EastBedfordshire:Saturday Social ClubContact: Karen Richards 01234 792278

Cambridgeshire:OstomisticsContact: Heather Connor 01733768332 Mob: 07757167422

Essex:ConnectContact: Lin Hart 01279 505273 M.E.S.S (Mid Essex Stoma Support)Contact: Paul Foulger 01245 224374Jeanette Johnson 01376 511862N.E.S.S (North Essex Stoma Support)Contact: Mr K Harvey (Chairman)01206 271425Brian Waller (Secretary) 01206 540449Optimistic OstomatesContact: Janet 01702 385510 orAngela 01702 385509South Essex Young Ostomy GroupContact: Paul Gray 01708 501268STEPS Contact: Jackie Coleman 01268 451937Redbridge Ostomists ClubContact: Stoma Nurses: Chris/Lisa 0208970 8321

Hertfordshire:ConnectContact: Lin Hart 01279505273ColoniseContact: Gill 01727 851556Hertford Stoma Support GroupContact: Ralda 01992 535311Stevenage OstomisticsContact: Alfred Levy 01767 316958

Lincolnshire:Friends Support GroupContact: Betty 01205 724120/Sheila01205 364493 Grantham Stoma Support GroupBobbie 01476 464822

Norfolk:Ostomy Friendship & Support GroupContact:01553 770288/768271/775698Ostomy Friendship Group ofKing’s LynnContact: CA for details 0800 328 4257StarsContact: Anne Brown 01603 661751

Suffolk:East Suffolk Ostomy GroupContact: Marion Fisher 01473 311204James Pagett Ostomy Support GroupContact: Sandra Hutchings 01502585955West Suffolk Support GroupContact: Jessica Pitt 01638 515525

England - South EastBerkshire:Monday Pop In Group (Bracknell)Contact: Jackie Dudley 01344 426652WBOC (West Berkshire Ostomy Club)(Reading)Contact: Jackie Dudley 01344 426652

Hampshire:Solent Ostomates Support GroupContact: Carole Summer 07527 707069Wessex Urology Support GroupContact: David Morris 02392 361048

Isle of Wight:OptimisticsContact: Stoma Nurse Lynne WebbSCN 01983 534009Semi Colon Bowel Cancer SupportGroupContact: Tony Crowson Chairman01983 244656

Kent:Ashford Stoma SupportContact: Chairwoman - Mrs UrsulaNaish 01233 640863Atoms Support GroupContact: Maria Culleton SCN01227 769679 or 07827997424 Canterbury & Coastal Stoma SupportContact: Marie Culleton SCN01227 769679 or 07827997424Dover & District Stoma SupportContact: Marie Culleton SCN01227 769679Dover Stoma Friends Group SupportContact: Julie Bell & Ros Marshall07771345701/01233616646Maidstone Stoma Support GroupContact: Judy or Kirsty01622 224305

London:Bowel Cancer Newham Contact: Scyana 0208 5535366Homerton Hospital Bowel & StomaSupport GroupContact: Toni Johnson 0208 510 7599Angela Davy 0208 510 5318Shepherd Bush Stoma Support Group Contact: Roslyn 07984979728 or Mary 07773397234Whipps Cross University HospitalContact: Christina 0208 5356563

Middlesex:Inside OutContact: Bob (Chairman) 02084284242 Sarah Varma 0208 2354110 Semi-Colon ClubContact: 01895 179391

Oxfordshire:Oxfordshire Ostomy FellowshipContact: Pat Longworth 01235 524163

Surrey:Epsom & District Stoma Support GroupContact: Jan/Sheena 01372 735232

Sussex:(SAS) Brighton & District Stoma Caresupport Contact: Sylvia Bottomley 01273 554407The Ostomy Friends GroupContact: Jane Quigley 01323 417400Ext 4552

West Sussex Princess Royal StomaSupport Contact: Tina Walker 01444 441881Ext 8318

England - South WestAvon:B.O.S.S Bristol Ostomy Self Support Contact: Christina 01179 075326Joyce 01179 558236 Rob 01179668021

Cornwall:Ostomist and Carers Support GroupContact: Christine Davey 01208 831471OptimistsContact: Sue Hatton 01326 340058

Devon:Devon IAContact: Margaret Bond 01392 447374Devon Stoma Support GroupContact: Donna Ashbrook01626 854862

Dorset:CUPID (Colostomy Urostomy pouchIleostomy of Dorset) ChristchurchContact: CA for details 0800 328 4257Cupid (Colostomy Urostomy pouchIleostomy of Dorset) PooleContact: CA for details 0800 328 4257

Wiltshire:Swindon IAwww.swindon-ia.org.ukWessex Stoma Support GroupContact: Michael Slater 01722 741233

WalesBlaenau Gwent Self HelpContact: Celia McKelvie 01873 852672Royal Glamorgan Stoma Care Support GroupContact: Domenica Lear 01443 443053Swansea Ostomy Self Help GroupContact: Glynis Jenkins 01792 418245Wrexham Ostomy Friendship GroupContact: Mrs R Thomas 01978 359445

Northern IrelandCauseway Patient Support GroupContact: Mary Kane 028 70346264Daisy Hill Hospital NewryContact: Bernie Trainor028 3883500 Ext 2222Mater Hospital BelfastContact: Karen Boyd028 90741211 Ext 2329Southern TrustContact: Mary Jo/Bernie 028 38612721

EireBowel Cancer Support Group(Irish Cancer Society)Contact: Olwyn Ryan+353 12310500Mayo Stoma Support (Castle Bar Hospital)Contact: Marion Martyn094 902 1733

FLUSHABLEFLUSHABLEFLUSHABLE

You can rely on FreeStyle Vie Flushable Manufactured by Welland®, a CliniMed® Group company

Do pouch disposal worries cloud over a family barbeque in the garden? FreeStyle Vie Flushable is an easy to dispose of pouch that comes with an Easy-PeelTM fl ushable, biodegradable inner liner. In tests, FreeStyle Vie Flushable has been shown to fl ush away fi rst time, every time, no matter where you are.1 With a soft outer layer for extra comfort and a Dual-Carb® fi lter to prevent odour and ballooning, you can be sure of a comfortable and secure fi t.

Why not let FreeStyle Vie Flushable take the stress out of going out, while you roll up your sleeves and get cooking!

Reference: 1. Flushability test based on the UK and European standard for domestic waste, Würzburg, Germany.

For a free sample of FreeStyle Vie® Flushable, please complete the coupon and return it to: CliniMed Ltd, FREEPOST HY241, High Wycombe, Bucks HP10 8BR (NO STAMP REQUIRED), call our free confi dential Careline on 0800 036 0100 or visit www.freestyleviefl ushable.com

Mr/Mrs/Ms: Initials: Surname: Address:

Postcode:

Tel. No.: Email:

I understand that this request will be handled by CliniMed Limited or SecuriCare (Medical) Limited. I would like my details to be kept on fi le, so that I can be kept up to date with information about relevant new products and services.

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. Fannins N Ireland: 028 907 35581. Fannins Eire: 0035 312 907047. CliniMed Ltd, a company registered in England: number 01646927. Registered offi ce: Cavell House, Knaves Beech Way, Loudwater, High Wycombe, Bucks HP10 9QY. CliniMed®, Welland®, FreeStyle Vie®, Dual-Carb® and Easy-Peel™ are trademarks of CliniMed (Holdings) Ltd. ©2011 CliniMed Ltd. 1422/0611/1

Confidence to fl ush,wherever you go

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