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

welcome to W IN T E R

Welcome to the winter issue ofTidings... A Happy New Year toeveryone! I hope you enjoyedthe festive season with familyand friends and that you greetedthe New Year with a clink ofglasses filled with your favouritetipple!

The beginning of a New Year is alwayssuch a special time! It’s a time forrenewal, for taking stock, a time whenwe can cheerfully say, ‘out with theold and in with the new’. Whateveryour resolutions this year, I hopeTidings remains top of your readinglist in 2011!

With your help throughout 2010 eachissue of Tidings magazine has beenpacked full of information,inspirational stories, practical adviceand fundraising activities! Kind thanksto everyone! There has also been anincrease in the number of submissionsto Tidings magazine not only from itsdedicated readership but also fromnew readers who have been givenTidings by their stoma care nurse orby you! We are delighted that this isthe case - long may it continue!

Tidings magazine endeavours toclarify, inform and support theostomate ‘living with a colostomy’. It’sthe Editor’s task, together with theEditorial team, to examine and keep inour minds eye the ‘bigger picture’ andto dispel the negatives where andwhen they present. So what is the‘bigger picture’ I hear you ask? Well,for anyone who is a regular reader of

Tidings you will already know! I’ll letJustin Hansen the determinedkayaking fundraiser and fellowostomate tell you…‘It was amazing tomeet so many people along the waywho asked what the trip was allabout, and to find myself talking tototal strangers about the pros andcons of varying stoma products. I wasalso staggered to discover how manyothers either were or knew anostomate’. Got it! Yes! That’s the‘bigger picture’! There are manyostomates just like you - differing inage, sex, and ethnicity going abouttheir daily activities throughout theUK…so if some days you feel a littledown and don’t feel very positivealways remember the ‘bigger picture’you are not alone!

Tidings magazine extends a warmhand to YOU and to everyone involvedin stoma care and to the ostomycommunity in its widest sense. Tidingsis proud to provide a discussionplatform that reflects and considersaspects surrounding the ostomate andstoma care.

This past year has been incredible! Theeditorial team has been fortunate toreceive a wide variety of articles fromreaders, stoma care nurses, surgeonsand many more – so do please keepthem coming! (Just to explain, if youhave submitted an article, whichhasn’t been published, it may well bepublished in a future issue.)

This year we want to hear from evenmore of YOU! So don’t hold back getinvolved! New patients, experiencedcolostomates, irrigators, familymembers, carers, stoma care nurses,GP’s, surgeons, stoma care productmanufacturers/suppliers, pharmaciststell us about your events, stories,issues I am sure you all have much to contribute!

Let’s make Tidings magazine evenbetter! A rounded magazine that trulyreflects the ‘bigger picture’ foreveryone to enjoy in 2011!

A few words...it was a real privilege tomeet some of you at the recent CAOpen Day at Gaydon. I only wish Icould have stopped to chat more,perhaps next time...also to speak toyou as editor via Tidings, chat on thephone, read your letters and receiveyour messages by email. As someonewho fully understands what life canbe like ‘living with a colostomy’ I amhere for you whenever or howeveryou decide to get in touch, so neverhesitate!

I would also like to send out several BIG messages of thanks andappreciation...Firstly, to our ‘DearNurse’ Julie Rust, who always makestime even though she is exceptionallybusy to answer your medical queriesin Tidings.

To the Editorial team! Thank you foryour ongoing support, excellentcontributions, ideas, passion, medicalobservations and proof-reading skills –well done team!

Finally, thank you to the advertisers.Without their continued support,Tidings magazine in its current formwould not be possible! And to theunsung heroes who continue toensure the highest quality ofproduction and print that thispublication truly deserves!

On behalf of the Editorial team enjoythis issue of Tidings. I encourage YOUto get involved with Tidings...YOUmake it what it is...YOUR Magazine!

Email:editor@colostomyassociation.org.uk

PS.If you haven’t done so alreadyplease send back the Tidings FeedbackQuestionnaire from the autumn issue -many thanks!

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 1

3

all your regulars

WelcomeFrom the Editor

How to get in touch...About the...Colostomy AssociationEditorial TeamEditorial submissionsAdvertising informationPublication Dates

CA NewsPresident’s MessageChairman’s MessageGreeting from the office...

FundraisingYour donations... stories and the 500 Club

ConnectionsMarketplace...advertiseyour events • messages •services here...

NotebookUpdates and events

DonationsMaking a difference...

6

8

10

50

4 8

51

i n s i d e. . . . . . . . . .

storycover

Colostomy Association Open Day 2010...featured on page 28

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

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

ProductShowcaseNEW to Tidings...understanding the ostomy product

14

. . .this issuereal lives...

Pathways to a ColostomyHelen McTurk tellsher story...

Ten months on...Follow up from Susan Fifer

Young OstomatesBreakaway...a family affairand more

Ostomy CommunityGutless KayakingJustin Hansen paddleshis way to success...

20

& special features

health...DietA balanced view...Losing those extra poundsafter Christmas canbe difficult when you have a stoma...

Irrigation and YouSue Hatton repliesto your responsesfrom the autumn issue

Dear NurseYour letters and queries

22

travel...Insurance for the ostomateTaking on TravelInsurance...Duncan WellsUK voice over artist andostomate - tracks downinsurance providers...and reports on hisfindings

24

support...Open DoorFocus on CA Volunteerin Scotland

Reaching outOpen Day success at Heritage Motor Centre

Support groupsIn conversationMoira Hammond writesabout the OutlookSupport Group

Support grouplistings

12

interest...A colostomatecommentsa colostomate’sperspective

ChatbackReaders’ writes

38

16

32

34

36

4 2

4 5

28

53

54

39

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

EDITORIAL TEAM

Editor Jane Wood

Associate EditorColostomate& Helpline Volunteer Rosemary Brierley

Executive TrusteeColostomate& Helpline Volunteer Sue Hatton

Trustee Colostomate& Helpline Volunteer Jackie Dudley

Office Administrator Gill Herbert

Office AdministratorJo McKenzie

Colostomate& Helpline VolunteerGeorgina Williams

Colostomate & Volunteer Bob Buckley

Stoma Care Nurse AdvisorAmanda Gunning RGN, CNS

Tidings is YOUR Magazine...Editorial S u b m i s s i o n s :Tidings is a quarterly publication. Yo u rcontributions 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 YO UR magazine to life! You cansend these as prints or digital images.

Fe e d b a c k . ..We are always trying toimprove your Magazine and welcomeyour feedback. Enjoy this edition ofTidings we look forward to bringi n gyou the next edition...

How to supply digital images:When supplying digital images forinclusion in Tidings please try toobserve some or all of the followingc r i t e r i a : -

• Images should be in RGB mode

• Images should not be less than1500 pixels x 1200 pixels at 30 0pixels per inch (equal to 12.5cm x10 c m ) .

• File sizes not less than 10 M b yte su n c o m p r e s s e d

• Images in Tiff with LZ Wcompression or JPEG format.

• For scanned images please set at300 ppi in RGB mode and scano r i ginal @10 0 % .

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

Publication:Spring April 2011Summer July 2011Autumn October 2011Winter January 2012

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:Helpline: 0800 328 4257

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

Find us on Facebook:

Simply visit our websiteand register at:www.colostomyassociation.org.ukor contact:General Enquires: 0118 939 1537

How to get in touch. . .with the Colostomy Association and Ti d i n g s . ..

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: e d i t o r @ c o l o s t o m y a s s o c i a t i o n . o r g . u k

or e-mail: c a s s @ c o l o s t o m y a s s o c i a t i o n . o r g . u k

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

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

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

Message from our President...The Colostomy Association is now athriving and expanding success story.Our Open Day get together at TheHeritage Motor Museum and Centrenear Gaydon was full of vitality and an evolving sense of purpose.

My own priorities at this time are tofoster and develop ways of providingeducation in alternative methods ofstoma care management that may

improve the colostomists’ enjoymentof life. The initiative to providepractical training in irrigation receiveda sharp set back with the death of ourmuch loved Ann Leppington-Clark, butit is wonderful that Amanda GunningRGN and CA volunteer nurse hasdedicated herself to this cause. It ismy hope that in the future irrigationmasterclasses will be available tothose who are interested.

It goes without saying that this hasnothing to do with the money thatwould be saved for the NationalHealth Service if irrigation were morewidely adopted, and that theAssociations approach is basedentirely on championing the variouscauses of the colostomist and his orher long-term well being in every facet of life.

It is a huge pleasure to welcome asVice-President of the ColostomyAssociation Mr Ian Daniels, ConsultantColorectal and General Surgeon at TheRoyal Devon and Exeter Hospital,where he is also a lecturer in the upand coming Peninsular University.He and I have worked together in the

past and will be visiting various partsof South Africa together to performdemonstration surgical operations inrelation to bowel cancer early nextyear. He has formerly agreed to takeforward the concept of a specialistcentre to handle the problems ofcolostomy, hernia, stricture, prolapse,etc, and it is my hope that he and Itogether will be able to identifyeventually several centres in differentparts of the UK, to provide a similarservice for our members when thesolution to their problems may bebest attended to by a further relativelyminor operation.

What we all need to say is, thank youto Tidings and all it does to bringtogether the wonderful people in theColostomy Association office and themany colostomists who need helpthemselves or who want to help invarious ways. They are all committedto further success in the future.

Kindest regardsProfessor Bill Heald OBE

Message from our Chairman...I am pleased to announce that theColostomy Association continues to gofrom strength to strength! This yearhas seen great progress in patientliaison, support and financial stability.

I feel I must thank all our volunteers,who continue to wave our banner insupport of patients up and down theUK. Volunteer feedback is enormouslyimportant to the Association as ithelps give a clearer view of what isneeded. Volunteers’ tireless efforts

have not gone unnoticed. Indeed in2011 we will launch a major initiativefor volunteers. Two sponsoredweekends are planned and details willbe available shortly via head office.The concept being, to meet and get toknow our volunteers and theirpartners, to learn from them and withtheir help further develop ways inwhich the Colostomy Association candeliver even better support to itsmembers.

We are grateful to the stoma careproduct manufacturers/suppliers whohave been extremely supportive of ourefforts over the last year. We in turnhave been able to offer them a serviceto extend the knowledge of stomacare products to ostomates via TidingsMagazine and by sending outinvitations to their patient open days.

Our new website is in its final trialsprior to its launch early in the NewYear! Much hard work has gone intothe fine-tuning to make it much moreuser friendly than at present. We havebeen very lucky to have the benefit ofa volunteer experienced in IT who hasprovided technical support and liaisonwith the web designer. Other

volunteers and office staff haveprovided input and proof reading.

The Colostomy Association enters theNew Year with great enthusiasm todispel the myth of a colostomy beinga problem and to ensure that patientsabout to undergo the procedurerealise that in most cases it is not asbad as some would have thembelieve. As many of us ‘living with acolostomy’ are able to lead verypositive and dare I say it ‘normal’ lives.However, for those who findthemselves struggling or in difficultythe Colostomy Association will as everbe available to encourage, supportand reassure at all times!

Finally, I would like to thank theTrustees for their continuing supportand admirable work also head officestaff for their efforts this year, I’m sureyou know who they are!

Best wishes for 2011,

Monty Taylor - ChairmanColostomy Association

C A N E W S & E V E N T 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 our literature from newcolostomates, carers and stoma carenurses. Organising the helpline andliaising with volunteers to attend opendays. Feedback from volunteers aboutopen days lets Jo (who organises thediary) know what areas need moresupport.

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

The interest shown, following themany articles that have appearedabout irrigation, has been verygratifying. Members have been able to show their stoma care nurses theinformation and find out if they canirrigate. Stoma care nurses are callingthe office to receive more informationon the subject. A great step forwardfor a lot of our members.

Those members who are unable toirrigate are informed about how andwhere to obtain samples of pouches –to try and widen their knowledge ofwhat is available. We suggest that all0800 numbers of the manufacturersadvertising in Tidings are called sothat a wide range of pouches, flangesand accessories can be obtained.

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 officealmost always is followed up by thewords…if only. If only I had knownabout you when…

Manufacturer’s representativescontinue to visit, keeping us informedof new and improved products andservices. We have a wall in the officewith displays of the manufacturersproducts so everyone can look up toknow what product they are talkingabout. We even have the special smallpouches for babies on display.We have seen a large increase inmailings for company patient openday events, which has kept us busy.

As most of you know we had a verysuccessful Open Day at the HeritageMotor Centre, Gaydon in Warwickshirelast October. We would like to thankeveryone who attended for making itsuch a success and to say thank youto all those who helped on the day.The CA Open Day steering group willmeet in January to start work on thenext event. The details of the eventwill be confirmed in the Spring Issueof Tidings published in April.

So what else have we been workingon...well by the time you read this wewill have gone live with our new andimproved website. A big thank you toGill and our new office volunteerSarah for all the work they have put into make this happen. Your comments,contributions and feedback about thenew website would be greatlyappreciated.

Other projects include...

• A new volunteers database that willimprove our services to you and tonew patients. This will enable the CA to match new patients to anappropriate volunteer.

• Work continues on the VolunteersHandbook, and Volunteer training willresume shortly.

A BIG thank you to the volunteerswho covered the Helpline over theChristmas period without your supportthe CA would not be able to offer thisinvaluable service.

Well until the next time we reporthave a great New Year!

Warm regards,Richard, Gill and Jo

Other News...BBC Radio Berkshire

Through a friend of one of our localvolunteers in Reading the ColostomyAssociation was invited to appear onthe Anne Diamond show on BBCRadio Berkshire on 21st November at11.00am.

Prior to the day we were asked by the producer to submit backgroundinformation to enable the programmeto be compiled. Richard Bray and Iwere asked to be at the BBC ReadingOffices at 10.30am for the broadcast.

The producer met us at reception,introduced himself, got us both a cup of coffee and told us that AnneDiamond could not be there but thatPhil Gayle would do the interviewinstead. The next thing we knew wewere being ushered into thebroadcasting studio at 11.03 whilstthe news was being read fromelsewhere. We had a brief chat withPhil, then the flashing red light stayedon, and we were on air!

Phil put us completely at our ease andafter a few minutes of chat there wasa music break and a short discussionabout questions he wanted to explore.The broadcast lasted about 45minutes the time flew by and was aninteresting experience.

However, the scariest thing whendriving back through Reading with theradio tuned to BBC Berkshire andlistening to the tail end of Phil’sprogramme I heard him say, “earlierthis morning we were talking aboutcolostomies with Monty Taylor,Chairman of the ColostomyAssociation who summed up having acolostomy like this...”I was hearing myvoice on the car radio – a very weirdexperience but a very worthwhile onefor the Association!”

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

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

The Colostomy Association would like to say...A big THANK YOU to everyone who donated and raisedfunds on our behalf during 2010. 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 2011!

500 Club - Sept DrawMrs B R Hatton £362.00Mrs A Wilde £181.00Mrs E M Butcher £ 90.50Mrs A Campbell £ 90.50Dr H C Fowlie £ 90.50Mr L W Fincham £ 45.25Mrs M R Green £ 45.25Mrs E Payne £ 45.25Mr D Oakey £ 22.63Mr P Martin £ 22.63Anon £ 22.63

In Memory...Mr K V Gregory £1898.00Doreen M Braxton £ 302.51Mr G W Dawe £ 165.82Beryl S £ 100.00Mr J B Pritchard £ 63.20

Thank you

Charity Flowers...Did you know if youorder from CharityFlowers the CAreceives 15% of yourorder. The bouquetsare stunning andcome from Guernsey

Flowers. Send for your FREE cataloguetoday or visit:www. c h a r i t yflowers.co.uk or simply telephone 0870 5300600

We continue to recycle old

mobile phones. If you, or anyone

you know, receiveda new mobile

phone this Christmasplease ask them for the old one!For a freepost envelope contact:www.recyclingappeal.comor Tel: 08451 30 20 10 quoting theColostomy Association as your charity.

Kind thanks toeveryone who wrotein with donations...

Marathon Effort...

On October 10thlast year, I decided

to embark on a 13mile quest to raise money for theColostomy Association, a charitythat brought significant help to myAunt Gwen (pictured above) asshe battled against cancer.

This charity is often an unsunghero in the fight against theemotional impact an illness canhave on a person. The work thatthe charity accomplishes bringsenormous relief and support toindividuals who are suffering aswell as their families.

I decided to run the Royal ParksHalf Marathon in honour of myaunt who sadly passed away in the summer.

To date I have raised almost£1,150 from the kind donations offamily, friends and colleagues,which I hope will help the charityin continuing its valuable work.

Best wishes,Amanda Geller

Sainsburys donate...Sainsburys donated £100 because the husband of a staff member recently had a colostomy.

Rockwell Collins UK Ltd...donated £200 as a thank you for the advice and help CA gave to anemployee.

Runner Ian raises funds as a thankyou to CA for support...Many thanks to Ian McIntosh who ranthe Glasgow half marathon andScottish kilomathon. He raised thefantastic amount of £710, which willbe split between us and Dr Grays. Ian’s mum Margaret had acolostomy a couple ofyears ago, and Ianwanted to say thankyou for all thesupport received.

Thank youeveryone

for your kinddonations

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

F E A T U R E O P E N D O O R

The ColostomyAssociation has

volunteers all over thecountry. However, atpresent, only one of

them lives up inScotland. Tom Reid hasbeen a colostomate formore than eight years.He told Tidings about

how he first found outhe had bowel cancer,and how he came to

have a colostomy.

During the first sixmonths of 2010 Tom

attended thirty-six stomaopen days. He also

represents the CA onthe Scottish Stoma

Forum whose aim is toensure high quality

stoma appliances and awide range of choice

for ostomates. You could say Tom was lucky. If itwasn’t for bowel screening hewouldn’t have known he had bowelcancer… At the time he was fifty-eight, working as an engineeringmanager in Dundee. The screening kitarrived through the post and his wife,Isabel, persuaded him he should dothe test because ‘you never know…’Tom followed the instructions, sent itoff and thought no more about it.

Then the letter arrived. ‘Unusual cellsneeding further investigation,’ it said.A colonoscopy revealed a polyp thesize of a five pence piece; at the sametime the polyp was removed andmeasurements taken to aid thesurgeon during the operation – the

simple operation to take away twoinches of bowel either side of thepolyp and rejoining the ends. But fivedays later Tom’s luck ran out: for fourdays he had a very high temperatureand stomach pains. Then he started tovomit and felt very ill indeed. It was aSaturday night and the 2002 WorldCup was on TV. He didn’t know it atthe time, but the join in his bowel hadleaked and he’d developed peritonitis.

At midnight the duty surgeon wascalled and at one o’clock in themorning Tom was taken down totheatre for emergency surgery. Theoperation lasted four and a half hoursand afterwards he was taken toIntensive Care. His wife knew nothing

Tom Reid…Our Lone Vo l u n teer in Scotland

As a CA Volunteer and colostomate...Tom feels his role is to provide those inauthority with a better understanding of the needs of people with a stoma.He says, ‘Even when my days are eight to ten hours long, if I can help justone ostomate and answer their questions then to me it’s all worth it.’

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

of this until she got the phone callfrom ICU telling her to come at onceand bring someone with her. WhenIsabel arrived she was told that herhusband had less than a 5% chanceof survival.

Tom spent eighteen days in ICU. Heremembers nothing about the firstten, apart from the “futuristichallucinations” which always seemedto involve boats and the sea. Later hediscovered that he had been lying ona water bed. He was then transferredto the High Dependency Unit andfrom there to the ward. At first Tomwas just glad to be alive. It was onlylater, when he realised that he had astoma and what this meant, did hethink: ‘Why me?’

When he left hospital Tom believedhis stoma would only be temporary,and was looking forward to his sixmonth appointment when he thoughthe would be given a date for thereversal. So it was frustrating to still bewaiting a year later and then a shockto be told that, although there was apossibility of a reversal, he may nothave complete control of his bowels,especially when he got older.

Tom had been living with a stoma fortwo years when he developed aparastomal hernia. He was admittedto hospital for an operation to repairit, but as he waited to go down totheatre, feeling rather light-headedfrom his pre-med, the surgeon cameto tell him that his operation hadbeen cancelled, because anotherpatient required emergency surgery.However, the operation wasrescheduled as soon as possible andtook place a fortnight later. The site ofthe hernia was reinforced using meshand the stoma re-sited on the otherside. It was after this operation thatTom was told that it would never bepossible for him to have a reversal ashis bowel was now too short. At firstthis news left Tom feeling “gutted”, b u tas time passed he came to accept it.

The first Stoma Open Day that Tomever attended sticks in his mind. Therehe met an eighty year old lady who’dhad a stoma for many years. She wasstill using the original black rubberbags and cried with relief when shediscovered “disposables”. He spoke toSandy Wood, our CA volunteer inPerth at the time, and it was then thatTom decided he would like to be avolunteer too.

Since becoming a volunteer in 2008Tom has lost count of the number ofcolostomates he’s visited or spoken toat Open Days or over the phone.Nurses in Perth and Stirling ask him totalk to patients before or after theiroperations. Tom is very aware thatthere are many more new ostomateswho would benefit from meetingsomeone else with a stoma, and feelsit is a shame that not everyone whogoes into hospital for stoma surgery istold about the CA and the supportthat our organisation can offer.

Along with representatives of theother patient associations (IleostomyAssociation & Urostomy Association),Tom represents the ColostomyAssociation on the Scottish StomaForum. This is a committee which alsoincludes the stoma care industry andhealthcare professionals. Their aim isto ensure high quality stomaappliances and a wide range of choiceto help ostomates achieve the bestquality of life. Tom joined the forum inMay 2009 and has been involved indiscussions about the cost to thegovernment of stoma care productsand services, and the issue ofsponsorship of stoma care nurses (inScotland NHS posts are no longersponsored by appliance manufacturersand suppliers). As a colostomate Tom

feels his role is to provide those inauthority with a better understandingof the needs of people with a stomaand to persuade the government totake these needs into account beforemaking decisions which affect thelives of ostomates.

Tom is always very busy attendingOpen Days organised by hospitalstoma care nurses as well asappliance manufacturers andsuppliers: during the first six monthsof 2010 he attended thirty-six. Atpresent he is our only volunteer northof the border and covers the whole ofScotland travelling as far afield asInverness in the north, Stranraer in thesouth, Kilmarnock to the west andEdinburgh to the east. On these,sometimes long, journeys Isabel oftengoes with him and they listen to CDsof Tina Turner and Abba as they travelthe highways of Scotland. When youask Tom why he does it he says, ‘Evenwhen my days are eight to ten hourslong, if I can help just one ostomateand answer their questions then tome it’s all worth it.’

Tom’s message to all ostomates: ‘Oneday at a time and enjoy every one ofthem.’

Stranraer

Kilmarnock

Edinburgh

Tom...CA volunteer and our man on the ground in Scotland...travels north ofthe border, and covers the whole of Scotland travelling as far afield asInverness in the north, Stranraer in the south, Kilmarnock to the west andEdinburgh to the east. Tom says, ’ If I can help just one ostomate andanswer their questions then to me it’s all worth it.’

Inverness

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

S H O W C A S E N E W 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...from manufacturers andsuppliers. Colostomates...if you have found a stoma care product or service beneficial to ‘living with acolostomy’ please let Tidings know. YOUR findings could make ALL the difference to other colostomates.

Update on new stoma careproducts and services

All about Joey Pouch...Joey Pouch is the creation of DanielMale. Daniel, now 29, was diagnosedwith the terminal heart and lung disease(Primary Pulmonary Hypertension orPPH) at the young age of 20. After yearsof problems experienced when wearinga pump and Hickman line - Danieldesigned the Joey Pouch to hold andconceal the pump rather than having itconstantly falling out of his pockets!

Joey Pouches for colostomy bags keepyour bag safe and discreet while youmove around and get on with your life.Available in a range of colours. The smallcolostomy pouch is 140mm x 220mm.The large colostomy pouch is 170mm x240mm.

How to get in touch...Phone: 01872 575382 or 07500 338 480Email: joeypouch@live.co.ukWeb: www.joeypouch.co.uk

Note: 10% of the profits from the saleof pouches will be donated to theColostomy Association.

OstoMART...In response to many requests fromnurses and patients alike we arepleased to announce the introductionof OstoMIST Mint Spray tocompliment our wide range of OdourNeutralisers.

OstoMIST Mint Spray OdourNeutralising Spray - Highly effectiveodour neutralising drops and not amasking agent! The spray is effectivewith the worst odour problems. The 100ml and 50ml spray bottlescompliment the rest of the OstoMISTrange.

OstoMIST Mint Spray Product Code: SBL1 x 100ml Spray BottleSBL2 x 50ml Spray Bottle

Available on prescription from yourusual supplier or direct fromOstoMART: 0800220300

Samples are available now!Call us FREE 0800 220 300 -OstoMART Ltd

OstoMART Ltd – Great News!...

The dedicated Customer Care Team atour Peterborough Service Centre havetaken first place in the PeterboroughEvening Telegraph Business AwardsCustomer Care Plus category beatingoff other local companies with theirconsistent and dedicated customerservice. The photograph shows theteam at Peterborough (l to r) Gillian,Helen, Louise, Kerry and Angela and inthe background is Roger Black whopresented the award.

Stealth Belt Pro...is our newest ostomysupport belt designed provide extrastrong security and a full range of sizeadjustability. This belt makes a greatstarter belt. The Pro is ideal for peoplewhose weight varies and for people whoare active. Features include:

• Durable, high tech light weight stretchyfabric that is washable and flexible. • Extra strong double closure system. • The Pro Belt is fully adjustable. It maybe tightened or loosened for a fullsliding range of sizes.• For more security during water sportsor extreme sports the Pro belt may beclinched up to extra tight settings. • May be worn for intimacy or sleeping,twenty four hours a day.

To learn more visit... Web: www.stealthbelt.comor Email: sales@stealthbelt.com

New models of Overkill Alarmsavailable now...

The STOMALERT product which sensesstoma activity was first shown at theGaydon Open Day and received a lot ofinterest and helpful comments. Basedon this feedback, two new variations tothe original product are now available.The first of the new developments is a

vibrating alarm, for those with hearingdifficulties or for those who do not wantto disturb others. The second variationdispenses with the cable and uses aradio link to the alarm. This is invaluablefor parents and carers who do not sharethe same room.

All three models are fully explained ontheir web site www.stomalert.co.ukwith prices and order form.

The Esteem synergy® FlatMouldable stoma system fromConvaTec...

The Esteem synergy® Flat Mouldablestoma system from ConvaTec is anevolution in the design of stoma caresolutions. The device is able to bemoulded to the exact shape of yourstoma, and actively adapts to yourstomas movements throughout theday. As opposed to standardtraditional cut to fit stoma systems,Esteem synergy® Flat Mouldable givesyour stoma the gentle hug that itdeserves, and minimises your needfor any additional seals or pastes.

For further informationContact: 0800 282 254 (UK)

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

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

In the first of a NEW Series...Tidings takes an in-depth look at ostomy products...researchand development, product trials and how a product finally comes to fruition. We examine thefiner detail of the product itself and learn about its key features and benefits...that can make a difference to ostomates and their ‘quality of life’. In the spotlight this issue is...

“Brilliant”, “remarkable” and “20/20”are just a few of the numeroustestimonials received for Welland’slife-changing product, FreeStyle VieFlushable. It’s the most practicalsolution to pouch disposal there is,offering the security and comfort of astandard pouch combined with theconvenience and green credentials ofa toilet flushable liner.

You remove the outer cover as easilyas a yoghurt pot lid, drop thebiodegradable inner liner, flange andwaste into the toilet bowl, and flush itaway. The clean, recyclable outercover can then be popped in yourpocket or handbag, and into the mostconvenient bin or recycling unit. It’s aseasy as that!

But how did we come up with such asignificant product, incorporating theworld’s first biodegradable flushableliner, and the only one-piece flushableon the market? And what actuallygoes on behind the cover? Lots ofelements work together to create a

stoma bag, but in the finished productthey are ‘under wraps’ so to speak!Here the designers of FreeStyle VieFlushable have created an ‘exploded’diagram of our product to show youhow all the different parts fit together,and to help you decide if it will workfor you.

The Journey...The “Flushable” range was launchedsixteen years ago, after 3 years ofresearch and development. CliniMedand Welland had been listeningkeenly to patients’ concerns andfeedback. They realised there weresome key issues which neededaddressing urgently – issues whichwere affecting quality of life. One inparticular was disposal of used

Printguide

Release liner

Peelable seal ring

Odour barrier film

Step One...It’s easy...

• Very soft • New polyester-based, rapid-drying fabric • Attractive, neutral colour and discreet shape • Recyclable

• HyperFlex hydrocolloid – effective adhesion, kind on skin

• Vie easy-to-read cutting guide

• Biodegradable – based on natural proteins and carbohydrates

Hydrocolloid Flange

Easy-Peelable mechanism

• Large, tactile Easy-grip tab to guide the hands

• No need for a ‘knack’ – easy to open as a pot of yoghurt

The Cover

FreeStyle Vie®Flushable...

Non-woven soft front cover

Hydrocolloid

Printedproduct

code

Product Overview...

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

pouches. We heard too many storiesabout the embarrassment and distresscaused by inadequate facilities, andclinical reports backed this up (e.g.White 2002).

Unfortunately there was no consistentguidance for ostomates, who weretold in hospital either to cut thebottom off, empty and wash thepouch (often a messy business) andthen dispose of it, or to place pouchand contents in a plastic bag and putit in the rubbish. Ostomates told usthey found changing their pouchinconvenient, time consuming,unpleasantly odorous and indiscreet;in short, they found the wholeprocess ‘abnormal’, and saw the easeof just flushing the lavatory as a thing

of the past. It was decided that wewould develop a new product to dealwith the problem of disposal……. andtake a significant step towards life asit was before the stoma.

Our first flushable product was namedImpact®, because it had just that: alife-changing, positive impact onusers’ freedom and peace of mind.And since then we have continued todevelop and refine our flushabletechnology – the next big step beingthe introduction of the first of theFreeStyle® ranges, with its new,attractive shape, and morecomfortable fabric on both sides. (Andwhere appropriate, all the FreeStyleinnovations were applied across ourother ranges - so that the research

Inner bag

The filter

Non-woven soft back cover

into our flushable bag benefitedclosed, drainable and urostomypouch users as well).

And we didn’t stop there. Ourcommitment to development meanswe are constantly improving ourofferings to our customers – after all,satisfying users’ needs is the solepurpose of our research. We knowour customers are the experts, andwe hold “focus group” meetings ofusers, run by our clinical researchteam, to understand and implementtheir suggestions. And of course weultimately trial any new product witha large group of users to be sure weare fulfilling their needs. So indeveloping our “third generation”flushable technology we consultedgroups of Stoma Care Nurses, ourexisting flushable users and closedpouch users of all brands, and withthe information gathered we wereable to move on to our latestbiodegradable flushablerange…FreeStyle Vie Flushable!

Unique LinerThe biodegradable inner liner is thereally crucial part of FreeStyle VieFlushable. It is the result of extensiveexperimentation alongside researchand feedback – strength during wearversus solubility on disposal is quite abalancing act! – and it is completelyunique to our products.Biodegradability was an importantfeature to develop: it has beenestimated that approximately 36.5million used ostomy appliances aresent to landfill sites in the UK eachyear (Black, 2000), so environmentalresponsibility was a priority.

SeparationFreeStyle Vie Flushable’s new Easy-Peel™ liner and Easy-Grip tabmake changing much simpler forthose with dexterityproblems or impairedvision. Research showedthat, in the past, morethan 25% of peoplemotivated to use aflushable bag could notcontinue due to difficultywith removal of the liner,maybe through poor gripor eyesight, or because theycouldn’t learn the ‘knack’. Stoma

• Liner in two parts: outer fabric and inner film• Strong outer fabric maintains shape during wear, then dissolves on contact

with water in toilet bowl • Inner film collapses round faeces, ‘shrink wrapping’ them, allowing them

to be flushed away • Degraded by bacteria in the sewage system in the same time as normal waste

Unique Biodegradable Liner

• Vie laser-cut Dual-Carb filter • Cleans gas of organic and

complex odours • Reduces ballooning • Won’t get blocked

The Filter

Odour barrier film

Step Two...It’s simple...

nurses were sometimes put offrecommending flushable productsbecause of the necessity of learningthis knack – so we found a muchsimpler way to remove the inner linerwhen we designed FreeStyle VieFlushable. Now, pouch changes canbe completed far more easily and inmuch less time, making the wholeprocess more discreet.

The Cover The water-shedding properties ofFreeStyle Vie Flushable’s new covermeans it really is like water off aduck’s back! This helps preventperspiration build up, and you canshower, bathe and swim withoutworrying about wet patches anddiscomfort: just pat down gently witha towel. The thin flange and neutralcolour combine to create a discreetshape that’s the perfect cover underclothing, and flushability means youdon’t have to carry so manyaccessories.

FlangeFreeStyle Vie Flushable is available inpre-cut sizes for you or your homedelivery service to customise fromyour template, using the easy-to-readguide. A breathable film flangebacking makes for a mouldable fit,improving comfort and avoidingleakage, and tabs make the flangeeasy to apply and remove. “A joy towear” comments one happycustomer.

The Filter The Freestyle Vie Flushable laser-cutDual-Carb® filter removes organicand sulphurous odours and reducesthe likelihood of ballooning bymaintaining a steady flow rate. Thefilter won’t get blocked – which is oneof the root causes of ballooning –because the inner liner holds wasteaway from it. We knew odour was abig concern for ostomates, so wespent a long time finding out whichcarbons cleaned which types of gas –namely the sulphur containing odours(eggy smells) and the organiccontaining odours (rotten cabbagesmells). We’ve mixed these carbons inthe right proportions in the filter, soyou can eat what you like withoutworrying. And changing is lessodorous as well, as the waste iscompletely contained in the innerliner until you flush it away.

Tried and TestedIn tests based on the UK andEuropean standard for domesticwaste, 100% of liners flushed awayfirst time. Independent evaluation atthe Landesgewerbeanstalt Bayern(LGA) concluded that the pouch metor exceeded all European standardsfor toilet disposability. Meeting thesestandards means that the pouch canbe flushed down any toilet which can

accept toilet paper; so as well as inyour everyday toilet you can useFreeStyle Vie Flushable in portaloos, inthe air and, with care, at sea.

Results from a study of 86colostomates show that 37% wouldavoid going abroad, 33% would avoidair travel and 23% were reluctant tostay with friends (White, 2002). Thesefindings are worrying – but we hopethat anyone in this situation will feelencouraged to try FreeStyle VieFlushable and the freedom it brings.Disposability makes it ideal for a widerange of situations, including visitingfamily and friends, holidays, travel,restaurants, cinemas and theatres …and you can probably think of manymore!

User and Industry AwardsWhen a pre-launch evaluation by agroup of 120 patients endorsed allFreeStyle Vie Flushable’s new features– we knew we had made a big leapforward in the journey towards theideal flushable pouch. And since thelaunch in March 2009, praise for theproduct keeps on coming; it really hasbeen changing people’s lives!

One such person is AndrewMcQuillan. As the Managing Directorof a multinational manufacturingcompany, Andrew is always travellingand meeting new businesses andpeople. The problem of disposal usedto be a constant one. Andrew notesthat male toilets in particular are oftenvery poorly equipped, without a shelfor a bin – so what are you supposedto do with used pouches? Carry theminto your meeting?

Andrew decided to give our flushablepouches a try, and hasn’t looked backsince. He says he can change quickly,change anywhere, and live moreconfidently. When he moved onto

FreeStyle Vie Flushable, the benefitswere even better.“Simple…easy…more secure”, there’snow “no smell, no fuss, noembarrassment” associated withchanging. “[I] feel more normal”, hedeclares – which is exactly what we’reaiming for.

We have been proud to receiveseveral awards along the journey todevelop FreeStyle Vie Flushable. Wewon Millennium Product status(awarded to products whichdemonstrate innovation, creativity andare pioneering in their field), anIndependent Living Design Award,and the Sussex Business Award forInnovation. We are also grateful to theDepartment of Trade and Industry fortheir grant of Stage I and Stage IISMART awards to supportdevelopment of the product.

Now all we need is to spread theword as far as possible: that FreeStyleVie Flushable can make a hugedifference to everyday life and not-so-everyday life as well. It is CliniMed’saim to make a colostomate’s life as‘close to normal’ as it was beforesurgery, and being able to flush wastedown the toilet without worryingabout disposal is a big part of this. Asone customer writes “I am a normalperson. I can go away withoutthinking [of toilet arrangements]. I amconfident, unembarrassed and thatmeans a lot”. And of course we’ll keepworking on improvements by listeningto users’ suggestions and ideas, aspart of our ongoing research anddevelopment.

Our pouches with flushable linershave been listed on the Drug Tariff forthe past 16 years, and ostomates haveused nearly 18 million to date(including 2.4 million of the verylatest FreeStyle Vie range). They arereadily available on prescriptionalongside our standard colostomybags. For a sample, or for moreinformation about FreeStyle VieFlushable or any of our products andaccessories, please call our Carelineon: 0800 036 0100. To see anexample of Flushable in action go tohttp://www.freestylevieflushable.co.uk/index.html

References:Black, PK (2000) Holistic Stoma Care,London: Balliere Tindall. White, CraigA. (2002) Pouch Change andDisposal Study – Final Report

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

Step Three...It’s flushable...

Andrew in Rome on business

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

The after effects of that day still havea huge impact on my life twenty yearslater. When I arrived at the hospital Iwas given an emergency colostomy,along with other life savingprocedures and care. Things mighthave changed over the years, but back then emergency operations were just that!

The doctors and nurses had no timeto try and make my body look asnatural and ‘normal’ as possible. I wastherefore left with a cobweb-likenetwork of scars, and a huge stomaprotruding from the right side of myabdomen. It was quite high up, sittingabout 5cm (2 inches) below my lastrib, and was about the size and shapeof a golf ball. I know some of you outthere might be thinking that it doesn’tsound so bad, and there may even besome of you with stomas of similardimensions. But I can tell you that onmy small, fragile six year old frame, itwas totally out of proportion. And as ifthings couldn’t get any worse, I hadthe bags to deal with.

Back then there were only a handfulof companies who produced stomabags, and they were all pretty muchthe same. Big, bulky and made withonly basic plastic, they would lookvery crude when compared to today’sequivalent. I think it’s easy lookingback to understand why I took to thestoma like a brick in water, sinkingwith a feeling of confusion, immaturityalong with the normal innocentquestions about the body, that mostchildren have. It is no surprise that itdidn’t take too long for the childishact of rebellion to rear its evil head.This ended up with me totallyneglecting my stoma, resulting in myparents and stoma nurses providing100% responsibility in making suremy bag was emptied and changedwhen needed. With time I did learn

and understand the need to take careof my own hygiene requirements, andeventually became more independent.

As time progressed, and I wasentering my mid teenage years, Iheard the news I had been waitingfor. After ten years of living with thestoma, the doctors were now talkingabout the possibility of a reversal.They were not sure what the outcomewould be, or if it would work at all. Iwas more than willing to give it a try.

It didn’t all go to plan, but I didmanage to live a relatively “normal”life for ten years. However, my bowelwas so unpredictable; I suffered withincontinence on a daily basis. I missedmore meals than I would like toremember, I left hundred’s of partiesand social events early, then I justcouldn’t take anymore.

So the time came to talk to mypartner of four years, about my planof rehabilitation in to society. I’mincredibly fortunate to have a verysupportive package of family andfriends that made it a relatively easytransition.

My stoma was one year old on the11th of November, and it’s been anamazing year! My diary has been fullmost weeks with outings, meals andparties that would not have beenpossible before having my stoma. Thishas ended up with me gaining somemuch needed weight, which is a firstfor me. I am now in my second yearof training to be a nurse and myconfidence has grown so much; Isometimes forget I even have astoma. I’m not going to lie and saythat I don’t have bad days, but thosedays are now few and far between.

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

Pa t h w a y s to a colostomyAccidental Injury...leading to an emergency colostomyFor about one in a hundred colostomates their stoma is theresult of an accident. Helen McTurk, now twenty-seven, tells usabout what happened after she was involved in a severe caraccident in August 1990, when she was only six years old.

Readers’PANEL

contributor

My stoma was one year old on the 11th of November, and it’s been an amazing year! My diary has been full most weekswith outings, meals and parties that would not have beenpossible before having my stoma.

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

Losing those extra pounds afterChristmas can be difficult when youhave a stoma. Many people gainunwanted weight following stomasurgery due to changes made to theirdiet in an effort to control theiroutput.

A good way of assessing whether youneed to lose weight is to calculateyour Body Mass Index (BMI). YourBMI measures how heavy you are inrelation to your height and can becalculated using the equation;Divide the weight by the heightsquared. For example, you might be1.6m tall and weigh 65kg.The calculation would then be:1.6 x 1.6 = 2.56. Then divide 65kgby 2.56 = 25.39.

• If your BMI is below 18.5 you areunderweight and should not belooking to lose weight. If you areunder weight and are struggling withyour appetite speak to your stomanurse or GP who can support you andmay refer you to a dietitian.

• If your BMI is between 18.5 and24.5 you are within the healthy range,which shows that you’re a healthyweight for your height. However, it'sstill important to eat a healthy,balanced diet and include physicalactivity in your daily life.

• If your BMI is 25.0 or more this isabove the ideal range, which means

that you’re heavier than is healthy forsomeone of your height. Excessweight can put you at increased riskof heart disease, stroke and type 2diabetes, so losing your excess weightis advisable.

You may be interested to know whatyour weight was prior to your stomaformation; your stoma nurse orconsultant should have a record ofthis. Gaining excessive weightfollowing stoma formation can lead tostomal retraction (where the stomasinks into a skin fold or dip in theabdomen) and hernias which cancause complications fitting devicesand may require further surgery.

Unfortunately there isn’t an easysolution to losing weight. Despitewhat you may read in magazines oron the Internet, the only way ofsuccessfully managing your weight forgood is making small changes to yourlifestyle. Try to accommodate morephysical activity and make healthierfood choices. While fad diets mayreduce your weight quicker, keeping itoff is another matter. Sometimes itseems that all ‘healthy’ foods are highin fibre and can cause unwanted sideeffects. While high fibre foods aregood for keeping you fuller longer,they are not the be all and end all ofreducing your weight and, therefore,people with stomas should still beable to reduce their weightsuccessfully without adverseconsequences.

A balanced approach - Your overalldiet should be well balanced andinclude a wide variety of foods fromall food groups. Making small changes

to all the food groups can help you toreduce your weight gradually andkeep the weight off.

Starchy foods such as bread, rice,pasta and potatoes: These foodsshould make up roughly a third ofyour overall diet. You should have astarchy food with each meal, as theyare filling and low in fat. But bewareof adding butter or spread, creamysauces or oils to starchy foods, as thiswill increase their calories. Remember,starchy foods which have beencooked, chilled and are then heatedfor eating, i.e. ready meals, pasta andrice salads or reheated food fromprevious meals, become ‘resistantstarches’ making them difficult todigest and liable to cause bloatingand increase stoma output.

Milk and dairy foods: Try to eatcalcium rich foods such as dairyproduce every day. However, dairyfoods can be high in fat, whichpromotes weight gain. Choose low fatdairy produce such as skimmed milkand lower fat cheeses and yoghurts tohelp reduce fat and calories in yourdiet to aid weight loss.

Foods and drinks high in fat and/orsugar: These should only beconsumed in small quantities or as atreat as they promote weight gain andgenerally have little nutritional benefit.Included in this section are fats, oilsand spreads which should be limited.You may find that avoiding buyingcakes and biscuits reduces thetemptation to have them so often.

Meat, fish, eggs, beans: These areexcellent sources of protein, which are

In her second article for Tidings - Sophie provides advice on how to lose weight. Sheconsiders why some ostomates may find this difficult and suggests solutions.

New Year... New You!

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...

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

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

essential for good health. Womenshould have two portions of proteinrich foods per day, and men three.Again, choose low fat options. Leanmeat with all visible fat trimmed offwill also help to control your weight.

Fruit and vegetables: These areexcellent sources of vitamins andminerals and the vast majority are verylow in calories and fat. Unfortunatelythe high fibre content of fruit andvegetables can affect stoma lossesand make these foods more difficultto tolerate. Peeling fruit andvegetables and cooking them well canhelp with these problems.

If fruit and vegetables do cause you aproblem, you may find it difficult tochoose healthy snacks. Here are somelow fibre, low calorie snack ideas tokeep you going in the afternoon:• Cracker breads or rice cakes withbovril/marmite or extra light creamcheese• Low fat yogurts • Cup-a-soups (slimming variety) • 2-3 rich tea fingers • Sugar free jelly

Fats - There is much written abouthealthy and unhealthy fats and theirpros and cons. While it is important tobe aware of the types of fats youconsume, from a weight lossperspective it is good to rememberthat all fats gram for gram have thesame amount of calories. This meansthat butter has the same amount ofcalories as olive oil. Therefore all fatsshould be consumed in lowerquantities if you want to lose weight.

Portion size: Perhaps your diet andstoma output are in delicate balanceand, although you do want to loseweight, you are worried about makingany changes due to the risk ofunwanted side effects. Or maybe youfeel you are eating the right thingsand still not losing weight. Reducingyour portion size is a fool proof way ofreducing your calorie and fat intake,promoting weight loss. Here are sometips to getting portion in perspective:• A portion of cheese is a smallmatchbox sized piece – around 30g. • A portion of meat should be roughlythe size of the palm of your hand –between 60-90g depending on yoursize and build. • Check food labels, the calories andfat may be listed as per 100g, not perportion. • Try a smaller plate – a side plate mayhelp you to control your portions. • Measure out fat and oil to keep theamount you use under control. • Eat your food slowly and chew everymouthful for longer, this helps youfeel fuller quicker.

Calorie Counting and Food Labels -Keeping an eye on your calorie intakecan also help you lose weight. Womenshould aim for around 1200-1500kilocalories (Kcals) per day and Men1500-1800kilocalories. Checking foodlabels will give you more informationabout the nutritional composition ofyour food.

Alcohol - Alcohol is very high incalories, which have no nutritionalbenefit. Be aware of the extra caloriesyou could be consuming fromalcoholic beverages.

Physical activity - Physical activity isvery helpful in weight managementand will burn calories and promoteweight loss. It also has many otherhealth benefits. If you are consideringtaking up a new exercise regime youshould first discuss this with amember of your healthcare team.Many GP surgeries now offer ‘exerciseon prescription’ schemes, which giveyou the opportunity to increase yourphysical activity levels in a safe andcontrolled way.

Excellent sources of furtherinformation include:

• NHS: www.nhs.uk

• The British Heart Foundation: Tel: 020 7554 0000Web: www.bhf.org.uk/

• The Food Standards Agency: General enquiries - HelplineTel: 020 7276 8829Email: helpline@foodstandards.gsi.gov.ukWeb: www.eatwell.gov.uk/

Your diet questionsanswered...

All per Low: Medium: High:100g a healthier fine in only have

choice moderation occasionally

Sugars 5g or less 5.1-15g More than 15g

Fat 3g or less 3.1-20g More than 20g

Saturates 1.5g or less 1.6-5g More than 5g

Salt 0.30g or less 0.31-1.5g More than 1.5g

Average calorie content of alcoholic drinks:

Bitter: 1 pint = 170kcals Cider: 1 pint dry = 204kcals 1 pint sweet = 238kcals Premium Larger: 1pint = 482kcals Red Wine: 125ml (small) glass = 85kcals Dry White Wine: 125ml (small) glass = 82kcals Medium White Wine: 125ml (small) glass = 92kcals Sweet White Wine: 125ml (small) glass = 117kcals Spirits: per 35ml measure = 66kcals(not including a mixer)

Q: In Diet and Your Stoma (TidingsIssue 19) it states that: ‘the last part ofthe small bowel (terminal ileum)absorbs vitamin B12 so if you have hadyour terminal ileum removed you mayrequire three monthly vitamin B12injections.’ In April 1998 I had myrectum and part of the large bowelremoved due to cancer. A month later Ihad adhesions and had an operation toremove part of the bowel (and otheraffected parts) to clear obstructions. Iam not sure if any of the small bowelwas removed. However, I now have astoma. I visited my doctor to discuss myfeelings of tiredness and low mood. Hesuggested various diet changes, rest etc.but nothing was said about B12. Do youthink this could be a cause? I have beenfeeling very, very tired and listless for along time but hesitate to visit the doctoragain, unless lack of B12 might be thecause.

A: Without your full surgical history it isdifficult to know if B12 deficiency is thecause, your description of the surgerycertainly suggests this may be the culpritof your symptoms. Your GP can checkyour B12 levels with a simple blood testand can commence treatment if needed.Other symptoms of vitamin B12deficiency include problems withconcentration so if you still feel this maybe the problem I would suggest youmake another appointment.

Traffic light system applied to food labels makes it easier to choose healthy options

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

The first point to remember whenasking for insurance is to declareeverything. Declare the stoma and themedical condition that resulted inyour stoma. And don’t forget todeclare any other pre-existing medicalconditions. If you fail to do this it mayinvalidate the insurance.

The second point is to shop around.

Now let’s get a couple of insurancesout of the way to start with. Being anostomate will not affect yourhousehold insurance (contents orfabric) or your car insurance, assumingyou are declared medically fit to drive.

However, because a stoma is theresult of some other medicalcondition, being an ostomate mayaffect a number of other insuranceareas including; Life Insurance,Medical Insurance (BUPA etc.), CriticalIllness Insurance, Mortgage Insurance,Travel and Medical Insurance and KeyPerson Insurance.

Leaving Life Insurance, MortgageInsurance, Medical Insurance (BUPAetc), Critical Illness Insurance and KeyPerson Insurance on one side,because clearly any illness or medicalcondition will have a significantimpact on these, we are left withTravel Insurance.

The more recent your surgery and thelonger your stay in hospital the higher the premium loading is likely to be. Ininsurance terms 1 year is a goodmilestone. If you have been out ofhospital and treatment free for a yearthen this will help to keep the loadingof the premium down. If you decideto travel 11 months after yourtreatment it might be worth delayingthis until 12 months have passed asyou may well benefit from a betterpremium. It is worth speaking to thespecialist insurance companies whounderstand medical conditions. Theremay well be a loading on thepremium but this is likely to be agreat deal less than you would pay

with a mainstream insurancecompany. There have been instanceswhen mainstream insurancecompanies have charged cancerpatients 10 times the normalpremium. And recently someone wasquoted travel insurance at £1000 for a2 week stay in the USA which aspecialist company arranged for just£180.

If you have had a stoma for a numberof years and do not need medicalattention for this or the condition thatcaused it you will be very unlikely tohave to pay a loading on thepremium. And you may get the bestrates by approaching the mainstreaminsurance companies because youand your condition may well falloutside their area of concern.

You may also be asked about certaintypes of medication such as antidepressants. Anyone who hasexperienced long term hospitalisationor a reasonable stay in ITU will havebeen given anti depressants by thehospital. Always declare exactly whatyou are taking. Generally as long asyou have not been admitted tohospital with a mental illness withinthe last 12 months, the taking of antidepressants should not affect thepremium.

It is also possible with insurancecompanies to elect not to insure thepre-existing medical condition orstoma, if you don’t think anything willgo wrong or you feel that you canhandle it. Mind you, if you opt for thisand the pre-existing medical conditionresults in hospitalisation during theperiod of insurance and repatriation,you will be in for a big bill.Repatriation by air from Europe costsin excess of £25,000 and then therewill have been the medical costs inthe country where you were staying.

If you do have a complicated pre-existing condition that requirestreatment it may be better to speak tothe specialist medical insurance

F E A T U R E T R A V E L I N S U R A N C E

Insurance and the Ostomate...Taking on Travel Insurance...Duncan Wells UK voice over artist andostomate - tracks down insurance providers...examines the small printand provides us with a factual account based on his research...

Insurance companiesare not very imaginativeand if you present them

with something theyhave not come acrossbefore they will either

refuse you insurance orcharge you an

enormous premium.However, having got off

to a bad start, insurancecompanies are beingmuch more sensible

in their dealings with ostomates...

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

companies because their staff arelikely to be more understanding andinformed about your condition. Therehave been comments from people inthe past that mainstream travelinsurance company call centre staffhave been insensitive and have askedwhether callers had a "terminaldiagnosis". On occasion they did notknow what a mastectomy was. Onthat basis, describing your ostomy islikely to go way above their heads.

So who are these ‘enlightened’specialist insurers?

• InsuranceWith.com(www.insurancewith.com) was set upby Fiona Macrae who saw a gap inthe market. She says she was movedto start the business after beingdiagnosed with breast cancer in herthirties and found it difficult to getcover afterwards. "I had worked in theinsurance industry and felt a betterservice could be offered." Another advantage of dealing with aspecialist insurer is that their medicalhelp line staff may well be able tounderstand your needs better, in theevent that you have to claim. Forexample all the medical help line staffat Insurancewith.com are doctors.

Here are some other specialistinsurers.

• Free Spirit (www.free-spirit.co.uk)Considered to be good.

• All Clear Insurance(www.allclearinsurance.com orwww.allcleartravel.co.uk) – theirapproach is rather broad brush andtheir screening process is not thatdeep so they may well quote highpremiums for minor conditions andlow premiums for conditions thatshould command a higher premium.

• Freedom Insurance(www.freedominsure.co.uk) – Youcan’t deal with them online, only overthe phone. Again they don’t delve toodeep.

Many mainstream insurers will refercustomers to specialists. Axa (www.axa.co.uk), for example,refers customers to FreedomInsurance, while Aviva(www.aviva.co.uk) puts clients intouch with All Clear Insurance Other mainstream insurancecompanies that take an enlightenedapproach to insuring people with pre-existing medical conditions are;Royal Bank of Scotland(www.rbs.co.uk),

City Bond Sure Travel(www.citybond.co.uk orwww.suretravel.co.uk), Saga (www.saga.co.uk),

Don't just ring one specialist, as ever itpays to shop around as quotes canvary substantially. A recent ‘mysteryshopping’ exercise showed thatInsurancewith would charge a 63-year-old woman with a history ofbreast cancer £30 for a two-weekholiday in Cyprus. All Clear Insurance,on the other hand, quoted £85 for thesame insurance.

And if you need further advice, youcan always contact the Association of British Insurers, at:-

Association of British Insurers51 Gresham Street,London,EC2V 7HQPhone: 020 7600 3333Email: info@abi.org.uk

Very Important...If you are travellingin the European Economic Area EEAyou should always carry a EuropeanHealth Insurance Card (EHICreplaces the old E111) as well ofcourse as your travel insurance.

This allows you to benefit fromreciprocal health agreements in EEAcountries and will entitle you to freeor reduced cost medical care in thecountry you are visiting, although youmay have to pay for certain things atthe time and then claim the moneyback later.

The EHIC doesn’t cover you for anymedical treatment you have plannedin advance, only for medicalemergencies, although it will coveryou for continued treatment for anongoing illness while you are abroad,such as regular injections.

You can apply for a card by phone on0845 606 2030 or on line atwww.ehic.org.uk or by post – pick upan EHIC form from the Post Office.

Please be aware that: reciprocalhealth service agreements do notalways cover the full cost oftreatment. They do not cover the costof getting you home in an emergency,for instance. It is always advisable tohave travel insurance even whentravelling around the EU. But you'llstill need a European HealthInsurance Card because yourinsurance company may not cover thecost of treatment that the card covers.

If you try to claim in full, they may sayyou should have had a card! Alwaysread the small print. You can find outabout these health agreements in the'Health Advice for Travellers' bookletavailable from your Post Office.And of course the level of thepremium is also governed by whereyou are travelling. In the USA medicalcosts are very high and premiumsreflect this. Next comes the rest of theworld and then we have Europewhere medical costs tend to be thelowest and attract lower premiums.

Happy holidays and I hope thisinformation will help you getaffordable travel insurance premiums.Me? I happen to be with Sagabecause that’s who Sally gotreasonably priced travel insurancefrom when I came out of hospital. Butas soon as it comes up for renewal I’ll be giving Insurancewith a chanceto quote!

The European Economic Area EEA Countries included are...Austria,Belgium, Bulgaria, Czech Republic,Cyprus, Denmark, Estonia, Finland,France, Germany, Greece, Hungary,Iceland*, Ireland, Italy, Latvia,Liechtenstein*, Lithuania,Luxembourg, Malta,Netherlands,Norway*, Poland, Portugal,Romania, Slovakia, Slovenia,Sweden and United Kingdom.*Part of the EEA but not part of theEuropean Union (EU)

The following page provides a list of Travel Insurersextracted from the Colostomy Association Fact sheet...

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

F E A T U R E T R A V E L I N S U R A N C E

• CATIP (CA travel insurance policy)A policy designed for ostomates by an Ostomate. Contact details:Tel: 01202 512161E-mail:peter.martin@bournemouthinsurance.com Web:www.bournemouthinsurance.com

• Leisure & Lifestyle InsuranceSpecialist insurance for people whohave a stoma, No age limit for singletrips 75 for annual and thenAssessed. Contact details:Tel: 08445 763029Web:www.leisureandlifestyleinsurance.co.uk/specialist-travel-insurance

The insurance companies listedbelow will cover ostomates. Werecommend that you contact at leastfour companies as quotes can vary:

• Age ConcernWill insure pre-existing medicalconditions and cancer with medicalscreening. No age limit.Contact details:Tel: 0845 6012234Web: www.ageconcern.org.uk

• All Clear Travel InsuranceWill insure pre-existing medicalconditions with screening. Annualpolicy age limit 70years. Single policy,no age limit.Contact details:Tel: 0845 2505250Web: www.allcleartravel.co.uk

• Chartwell InsuranceWill insure pre-existing medicalconditions with screening. Annualpolicy age limit 64. Single trip 79Contact details:Tel: 0800 6524652Web: www.chartwellinsurance.co.uk

• Columbus DirectPlease ring for medical condition/scover. Various offers, can be aged upto 99. Contact details:Tel: 0800 0680060Web: www.columbusdirect.com

• Free SpiritWill insure terminal conditions.Ring for quote. No age limit.Contact details:Tel: 0845 2305000Web: www.free-spirit.com

• Insurance WithCreated specifically to help thosesuffering from medical conditionsto get travel insurance.Contact details:Tel: 0845 2307159Web: www.insurancewith.com

• JD ConsultantsWill insure pre-existing conditions withscreening. No age limit.Contact details:Tel: 01689 859102Web: www.jdtravelinsurance.co.uk

• LeisurecareCovers cancer related conditions,phone for personal service duringoffice hours.Contact details:Tel: 01793 750150Web: www.leisurecare.co.uk

• Marks and Spencers Ltd20% cheaper if booked online.Tel: 0800 731 2424Contact details:Web: www.marks&spencer.com/travelinsurance

• TravelbilityTravel insurance company especiallycreated for people who are disabledand those with pre-existing medicalconditions. Subject to screening.Annual 69, single trip 79.Contact details:Tel: 0845 3381638Web: www.travelbility.co.uk

• Worldwide TravelWill insure pre-existing conditions withscreening. Age 74 for annual andsingle trips.Contact details:Tel: 01892 833338Web: www.worldwideinsure.com

Note: It is crucial to let yourinsurance company know of anypre-existing medical conditions. Ifnot, the claim will be deemedinvalid and rejected on the groundsof non-disclosure.

Insurance and the Ostomate...

Editors Comment Kind thanks to Duncan Wells

for his time collating and writing thisarticle. If you have Travel Insurance

tips and experiencesto pass on please

write to:The Editor, Tidings Magazine

Colostomy Association2 London Court East Street

Reading RG1 4 QL

e-mail:editor@colostomy association.org.uk

e-mail:cass@colostomy association.org.uk

Tel:0118 939 1537

Planning a trip or holiday this year?

The Colostomy Association has a Travel Advice leaflet that couldreally help you plan your journey.There are also two types of TravelCertificates available in Europeanlanguages and Arabic, Hindi,Mandarin, Thai and Vietnamese.

Contact: 0118 939 1537 for yourFREE copies today...

Following is a list of insurancecompanies that specialise in providing cover for ostomates:

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

F E A T U R E C A O P E N D A Y

A little background…prior to Saturday16th October, in fact early May, severalvenues were considered to host the CAOpen Day. The winner hands downwas the Heritage Motor Centre,Warwickshire; it really did tick all theboxes! Kindly sourced and sponsoredby CliniMed/SecuriCare Medical.

A small steering group began planningthe open day. The group included SueHatton Executive Trustee, Mary ThomasTrustee, Richard Bray General Managerand CA staff member Jo McKenzie.Jane Wood donned a different hat andbrought her many years of experiencein event and exhibition management tothe table. Maureen Kelly-Smith PRManager CliniMed/SecuriCare Medicalsat in to give the exhibitor’s viewpoint.

As you can imagine all kinds of ideasand suggestions come up forconsideration when organising anyevent some are adopted whilst othersare discarded. The weeks leading up tothe event came and went. Othersponsors came on board, SaltsHealthcare, Coloplast, ConvaTec andOstoMart, kind thanks to them all.

Discussions continued…queries,emails, telephone calls, writtendocuments, visits to the venue,requests for speakers, meetings andmuch more. The event requiredconstant monitoring. Nothing could beleft to chance!

Finally the message in the diaryread…CA Open Day Saturday 16thOctober, venue, the Heritage MotorCentre near Gaydon, Warwickshire, starttime 10:00am. It was CA Day!

Members of the steering group arrivedat the venue the day before. Onentering the Conference suite theyfound several early exhibitors werealready fitting out their stands. Thesound desk, lights, and PA system werealso being installed and tested. CA hadthree areas to set up: specialistdiscussion, volunteer and CA mainstand. While some work finishedaround 5pm, the venue’s event co-ordinator and team carried on withtheir preparations into the evening.

Saturday dawned...the response to theOpen Day invitation had been good butas with any organised event you neverreally know how many people willcome, until the day, you can only hopethey will! Everyone waited filled withnervous anticipation and excitement!As the clock ticked towards 10:00 am,ostomates, their partners and familymembers arrived. In amongst them CATrustees past and present, CAvolunteers, VIP guests, and presentingspeakers.

Gathering was an eclectic mix ofpeople, a mini snapshot of individualsinvolved in and representing the worldof stoma care. Ostomates, Healthcareprofessionals, National patient supportgroups, Online patient support groups,Manufacturers and suppliers of stomacare products, all brought together in anatmosphere that promoted the positiveaspects of ‘living with a colostomy’.

A murmuring buzz built as peopledrifted into the Conference suite. Twolarge illuminated projection screensemitted warm messages of welcome tothe gathering audience. The 34 round

‘I really enjoyed it..What a great day...great

speakers! It was my firstexperience of a CA Open

Day I will definitelycome to the next one’...

These were just a few of the

many comments from ostomates

attending the recentColostomy Association

Open Day 2010last October.

And what a day it was too

packed full ofinformation

and inspiration!

Birthdaycelebrations

ColostomyAssociation

Open Day 2010

A great birthday presentgradually revealing itsgenerous content and

hidden surprises!

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

tables with 8 chairs around each werevirtually hidden by some 270 attendeessitting chatting ready for the off. Guestswere grouped around the six or soexhibitor’s tables whilst others werestill in the gallery amidst the displays ofstoma care products.

By 10:45am it was time to ‘mic up’ thespeakers. As everyone began to settle,Sue Hatton made her way onto thestage and up to the lectern to welcomeeveryone in her inimitable style andwearing a specially designed CA poloshirt! Sue’s welcoming addressdiscussed the importance of open days,outlined the day’s agenda andmentioned the inevitable housekeeping.Sue then handed over to CA’sindefatigable President, Professor BillHeald OBE.

Professor Heald took to the stage,generously congratulating the CA on itsachievements to date. Professor Healdoutlined his hopes and aspirations forthe Colostomy Association. He talkedabout the potential for surgeons todiscuss irrigation with patients prior tosurgery. He suggested surgeons leavemore bowel in place where possible togive patients choice offering theopportunity for irrigation. He alsohinted that surgical practice methods atthe close of a patient’s operation couldbe improved leading to better stomaformation and with it an increase inpatients’ quality of life. Professor Healddelighted in taking questions from theaudience on a variety of stoma relatedtopics, passing some queries by CAstoma care nurse Amanda GunningRGN for comment. On occasionProfessor Heald became very animatedand excited by the content of the

queries and conversations, whichhighlighted the importance of opendays and the enormous benefit of opendiscussion.

Next to speak should have been Mr. IanDaniels FRCS. However, Ian had beendelayed due to performing emergencysurgery and was on the Motorwaymaking his way up country fromDevon. That’s real dedication andcommitment for you! We’ll catch upwith Ian later.

So with the agenda slightly changedand a request to speak earlier than wasanticipated accepted! The indomitableSiobhan Crowther Manager of Lynn’sBowel Cancer Campaign steppedforward! Siobhan walked onto thestage wearing an attractive spottydress! What’s so unusual about thatyou ask? Well as you may or may notknow in November the charityorganises a “Dress Spotty Day” or “Spotthe Symptoms Day” to raise awarenessof the need to spot the symptoms ofbowel cancer. Everyone is encouragedto dress “spotty”. Hence the spotty dress!

Siobhan outlined the need for bowelscreening especially if bowel cancer isalready in your family and explainedabout the screening programme andthe simplicity of the test kit. Inconclusion, Siobhan said, “Bowelcancer is preventable, treatable andc u r a b l e ”. Siobhan took several questions,one in particular a query on screeningand the age of a family member -Siobhan’s answer, “If you are concernedabout a loved one and know yourfamily history, and think there is a riskof them developing bowel cancer, askthem to go and see their GP”.

Completing the morning session, takingto the stage to tell their stories andraise awareness for their much belovedcharity Breakway, came its FounderJulie Bastin, together with her bravedaughter Hannah! They were followedby several other courageous youngsterswith members of their families and GailFitzpatrick, Paediatric Stoma Care Nurseand Breakaway Trustee. Here are a fewwords from Julie...

“We arrived at the venue and, as usual,my nerves kicked in as our time arrivedto speak! Gail Fitzpatrick, PaediatricStoma Care Nurse and BreakawayTrustee, Carol and her son Fergus (15)Ainsley (18) Joshi (17) and his MumKarin, Tara (17) and my Hannah,nervously walked onto the stage andsat in a group together.

After a few minutes, the adults couldhave left the stage and left the ‘kids’ toit. They took over and spoke so openlyabout their stomas, about growing upwith one, about living life as a teenagerwith one and about what Breakawaymeans to them. Fergus summed upBreakaway, ‘I was 12 hours old when Ihad my colostomy, but was 12 yearsold before I met anyone like me, that’sthe difference Breakaway makes!’ Itwas truly humbling to listen to themspeak. I have known some of them forthree years now and to see how theyhave flourished is amazing. I am soproud of them all!

A huge thank you to the ColostomyAssociation for inviting us to their OpenDay and very special thanks to SueHatton, who made a request to raisefunds for Breakaway right after ourpresentation! Open Day attendees and

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

guests raised an amazing £421.30.Reena Patel Product MarketingManager for Convatec matched theamount bringing it to £842.60! Thismoney will go directly to families whowithout financial support would beunable to attend a Breakaway event”.

Time for refreshments! For theattendees a chance to stretch their legs,chat and visit more than twentyexhibitors’ stands to catch up on thelatest stoma care products or visit theMuseum. For the CA, an opportunity tosell raffle tickets to raise funds for theAssociation and to explain some of thefantastic prizes on offer. For others, alittle breather and quick coffee, then offto seek out the missing afternoonspeakers - Mr Ian Daniels and nowalso...Mr Glyn Davies MP! Comingtowards the Conference suite doorswas…Yes! You’ve guessed it! Mr. IanDaniels FRCS trailing a large laptop bagbehind him, arrived! Yeah! He’d madeit! To give Ian sometime to relax, load,and test his presentation the lunchperiod was extended slightly.

At just gone 1:30pm people were stillarriving. It was great! Buzzing! But howto get everyone back into their seats, atricky task I hear you say! Especiallywhen they could be anywhere withinthe venue! How was it done? Well bythe public address system of course!‘Ladies and Gentlemen would youplease take your seats the next sessionis about to begin - thank you’.

Taking the lectern for the afternoonsession was Mr Ian Daniels FR C SConsultant General & Colorectal Surgeonat the Royal Devon & Exeter Hospital. MrDaniels treated the audience to anexcellent and fascinating overview ofParastomal Hernias – Cause andTreatment (an often commoncomplication of stoma formation). Hediscussed the reasons why a patientmay be more susceptible to herniationand talked about the new thinking onstoma siting. Placing the stoma throughthe belly (front) of the rectus muscle toreduce the rate of herniation using themuscle to provide more support.

In what can only be described as agreat atmosphere, ostomates wereencouraged to ask questions. Tworoving mikes were made available andalthough it was a tight squeeze attimes to get round to people most ofthe queries asked were answered!Several ostomates standing to givetheir thoughts and thanks for the day!

Worryingly there was still no sign of MrGlyn Davies MP. So, the lovely deep

voiced Duncan Wells, one of the UK’stop radio and television voice overartists who had previously agreed to bea stand in speaker got ready! Some ofyou may remember reading Duncan’sremarkable story in ‘Pathways to aColostomy’ in Tidings Issue 12 called‘Blown Up’. Just as Duncan headedtowards the stage Mr Glyn Davies MPappeared, he’d made it too! Great! Butneeded a breather! Duncan went onstage, his voice quickly had theaudience transfixed as he entertainedwith his incredible story of his ownmedical trials and experiences,traumatic though they were. Conjuringvisual pictures interspersed withnotable quips he had the audiencelaughing and clapping! Thank youDuncan – great job!

As time was running short and thepresenters were so good it wasdecided to run with the rest of theoriginal agenda. Up next came VanessaDenvir gorgeous CA volunteer of“Embarrassing Bodies” fame! Vanessawove a spellbinding story talking abouther surgery for Crohn’s related cancer.Plus experiences that led her to wantto volunteer for CA and other notablecharities namely IA and NACC. Theselife-changing events revealed her to bethe creative and talented youngwoman that she is today! Vanessareally is someone who through herown positivity continues to dispel thestigmas and myths that surroundostomates bringing to others a betterunderstanding of what life is like ‘livingwith a colostomy’.

At last...Glyn Davies MP forMontgomeryshire followed – Glyn hadspoken at the very first ColostomyAssociation anniversary celebrations atStation Road, Reading back inSeptember 2005. Glyn delighted to beasked to speak again, reinforced thework of the charity, and gave hiscongratulations to all involved. Hepointed out how important patientassociations were giving members theopportunity to come together at eventssuch as these. Here are a few of Glyn’scomments about the CA Open Dayfrom his online blog…

“I was late arriving at the ColostomyAssociation's 'Open Day' today. It washeld in the Conference Suite at theHeritage Motor Centre at Gaydon, offthe M40, and it took a bit longer than Ianticipated. It’s 112 miles away! Luckyfor me that I was late. The organisershad to move my slot from immediatelyafter lunch until last slot of the day.Meant I heard presentations of 'MyStory' from Duncan Wells and Vanessa

Denvir. One of the pluses of myinvolvement in campaigns and charitiesto do with various 'illness and diseases'is that I get to meet the most amazingpeople!

The C A has been going as a self-funding charity for five years now. Iwent to its first birthday party inReading and did the cake and ribboncutting honours. Pleased to be invitedback today! Anyway, this blog wishes aHappy Birthday to Sue, Ernie and allthe good people at the ColostomyAssociation”.

Thank you Glyn your effort and timewas much appreciated as always!

Rounding up the day Monty Taylor –Chairman of the Colostomy Associationtook to the stage but just beforeMonty’s final words, the winners of theraffle prizes were drawn.

CA had been gifted some fantasticraffle prizes, they came from privateindividuals and the attending stomacare companies for which we must saya massive thank you.

The main prize donated by DuncanWells was a sailing weekend on hisfantastic boat ‘Dorothy Lee’. It’s true tosay sometimes things are just meant tohappen as this prize went to thecourageous children of Breakaway!

Monty ended the day by saying…‘Events such as this really make adifference and give those who attend areal sense of belonging to a charity thatexists to encourage, support andreassure all who are living with acolostomy’.

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!

Editors CommentThe Colostomy Association

is planning another Open Day event this year. To be a part

of it simply contact:

Richard Bray – General Manageron 0118 939 1537

or email: richard.bray@

colostomyassociation.org.uk

F E A T U R E C A O P E N D A Y

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

R E A L L I V E S A C O L O S T O M A T E S P E R S P E C T I V E

I’ve just reread the original article Iwrote ten weeks after I had mycolostomy. Like looking at a diary fromyour teenage years, it all seems a longtime ago and, fortunately, things havemoved on.

It’s now ten months since myoperation and I’m amazed anddelighted at how well I feel and howmuch I can now take my bag forgranted - well not too much butenough to let me live a normal lifeand do all the things I want to do.

It’s difficult to decide at what pointthis happened. It wasn’t overnight. Insome cases there were other thingscompeting for my attention –chemotherapy was one of them. Asemi-permanent line in my arm forthe chemo resulted in a blockage(Deep Vein Thrombosis DVT) and so Ihad to give myself daily injections ofanti-coagulants for three months.There were some predictable results. Iprobably don’t have to give toographic a picture to this readership ofthe problems of trying to do amorning bag change while having anose bleed at the same time. In suchsituations a sense of humour ishelpful - though may be stretched toits limits.

The end of chemo was probably theturning point. The arrival of summerhelped and I picked up old activitiesand started new ones. I was a bitwary of air travel – the volcanic ashdelays sent my imagination intooverdrive about airports and nothaving enough supplies. However, Idecided that I would see how I’d copewith an overnight ferry to Ireland; wehad a wonderful five days in Cork andKillarney. I was very pleased atmanaging a bag change with noproblems in the tiny bathroomattached to our cabin. Mind you, theIrish Sea was, unusually, like theproverbial millpond. I’m not sure whatit would have been like in a force sixgale.

In terms of travelling, I think I preferthe impersonality of a hotel roomwhere I can organise things the way Iwant them, to replicate the situation Ihave at home. I find this a bit moreawkward when staying with friends,even though they are all aware of thesituation and very understanding.

While I still haven’t taken uppotholing, I have joined a table tennisgroup at my local U3A and have justbought a ukulele. I’ve also lost someweight – nothing to do with myappetite or any illness but just as partof a reappraisal of my options and mysituation.

So, are there any further things I’velearned since the end of the ten weekmilestone?

One - It helps to be organised andhave a routine. I do a daily bagchange in the morning after I havehad a shower. All my supplies are ona small trolley in my bedroom (thekind you buy to organise kids’ toys)and I lay out everything I need plusmy clothes before I go into the

bathroom. A bag change with no“interruptions” from the stoma cantake place in about twelve minutes. Idid try timing myself once but realisedthat this was never going to be anOlympic sport, so why rush.

Two - If you are invited to a local“stoma event” by one of the supplycompanies, then try to go. You getfree samples and can find out aboutnew products. In one case we were allgiven a box of chocolates which I’dtake over a new stoma bag any day ofthe week. It also lets you chat to otherostomates and the local stoma nursesso it feels like a meeting of a fairlyexclusive club. Sharing experiences isreally valuable, something which youcan also do via the ostomy websiteson the Internet.

Three - I was surprised that manytoilets for the disabled, particularly inhospitals, were often so poorlyequipped and laid out. In a normalpublic toilet I expect at least a hookwhere I can hang my coat and mybag. In many places I was reduced toputting these on the floor – not veryhygienic. I actually got mychemotherapy day unit to get a row ofhooks put up for this purpose in theirsection. Never managed to do thesame in the main reception area ofthe hospital, no matter how manycustomer service evaluation forms Ifilled in.

Four - I found a small shopping bagthat had a zipped section at thebottom which was supposed to be forumbrellas. I put my supplies in there. Inow carry an empty washing up liquidbottle which I fill up at the washbasinbefore going into the toilet stall so Iam less reliant on using the disabledtoilets. This works because I drainrather than change my bag during theday. There are toilets in some places

Ten Months Later…Several readers have written to say how much they enjoyed the article “Ten Weeks Later”which we published in Tidings issue 18. Back then Susan Fifer described how she felt as anew ostomate and passed on some tips which were helping her to come to terms with herchanged body. As promised, we are now including a follow-on article in which Susan tellsus what she has learnt since she last wrote to us and how she feels now…ten months later.

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

where each toilet has its own washbasin – if you’re in central London,check out the toilets at the WallaceCollection gallery. Generally, museumsand art galleries are good; (traditional)theatres are awful.

Five - The Sangenic nappy binrecommended in an earlier edition ofTidings was a great idea. There is nosmell whatsoever from a week’s worthof bags. I live in a house and so couldput the bags in the outside bin on adaily basis if necessary but, if you livein a flat and/or have mobilityproblems, the nappy bin solution is amuch better idea.

A reversal is now on the cards. Whilethis was always a known possibility, Ispent the first few months after myinitial operations saying that there wasno way that I wanted more abdominalsurgery if it wasn’t absolutelynecessary. If I could manage thecolostomy and get on with my lifethen why go for elective surgery?

It was when my surgeon called me infor a chat that he raised the questionof a reversal. He understood myconcerns about more surgery andrecovery times, the possibility that Imight need a temporary ileostomy orthat there could be a repeat of theleak to the join in the colon whichhad resulted in my original colostomy.We discussed all this and I thenrealised that, since there was a goodchance of success, it would makesense for me to try.

He could have done the surgery quitequickly but we agreed to fix a date forfour months later to give me time toget friendly with the idea. Surgery willnow be in a month’s time. I’vedecided not to get worried about it -well, not too much anyway. Irecovered well last year and then hadthe prospect of chemo to think about.This is going to be a different ballgame and, whatever the outcome, Ihave a better understanding of whatcan happen. Whether I’ll be thissanguine the day before the operationis anyone’s guess but it’s a good wayof coping at the moment.

Susan Fifer

We will be asking Susan to write for a future issue of Tidings to tell us how she feels once she has had her reversal.

UC inspires Show...On Friday 24th and Saturday 25thJune 2011, the doors will open to anew national exhibition called TheGood Digestion Show, incorporatingIBD Expo Stoma Central, bringingtogether all matters relating to livingwith a permanent or temporary stoma,digestive disorders, IBD and IBS, andfood intolerances.

Being held at EXEC at the East ofEngland Showground, Peterborough,this exciting exhibition is the brainchildof husband and wife team, Craig andCaroline Bramwell. Whilst Carolinelived through years of sufferingUlcerative Colitis, Craig spent hoursand hours researching about thecondition, how to improve it throughdiet and lifestyle changes, and theultimate choices of surgery.

The exhibition is the culmination ofpulling all that research andknowledge into one interactive event.Not only can you meet all the stomamanufacturers face to face, but therewill there be great food to sample andnew exciting recipes to try out, withcelebrity chefs Antony WorrallThompson and Lesley Waters givingcooking demonstrations in the TheatreKitchen. The Seminar Theatre will alsohost a programme of interesting andinformative seminars and workshops.

Said Caroline: “Having lived with UCfor many years and now having apermanent stoma myself, I have foundthat it is possible to have a quality oflife, but it is important to see all thechoices that are out there. I know I amnot alone in this, which is why I felt sopassionate about it and why I havebrought this event to life.”

Since her surgery in March 2009,Caroline has already taken on a bigchallenge to prove that you canovercome conditions like UC – shecycled from London to Paris in under24 hours for charity in July!

To find out more about... The Good Digestion Show visit:www.thegooddigestionshow.co.uk.

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

Breakaway...bringing families and childrentogether building confidence for the future...

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

A Family Affair…It was with some trepidation that Iagreed to attend and supportBreakaway at the ColostomyAssociation Open Day.

My daughter, Tara aged 17, had beenasked to speak about her brother whohad an ileostomy aged 17. I must say Ihad reservations and bad nightmaresabout this on her behalf!

My son had been ill for three yearswith Ulcerative Colitis before havingan ileostomy and as many familieswill know, one child’s illness in thefamily affects everybody.

I didn’t realise until the CA Open Dayhow much it had affected Tara. Shegot up with her ‘new friends’ostomates themselves and spokeabout her brother’s illness and howmuch it had affected her. Sheemphasised how wonderful it was tobe able to talk to other siblings likeherself with a poorly brother or sister.

My family feel Breakaway have givenus a new lease of life. We love theatmosphere, the friendliness, and how‘we have all been in the same boat’ atsome point - how fantastic it is to talkto people who really do understandand can empathise with you.

Breakaway is a fantastic charity, someof the teenagers keep in touch viatheir mobile phones and facebookand can’t wait for the next Breakawayweekend to happen. We as a familynow help out as volunteers as we loveit so much and to see how everyonebenefits really is amazing.

Vickie Connelly (Mum)Breakaway Volunteer

Joe’s story...It was January 2009 and half waythrough my IT course at college and Iwas struggling to cope with my colitisso me and my mum went to see ourGP. ‘It’s not good is it Joe?’ ‘No,’ Ireplied. That day I was referred toLeicester Royal Infirmary and I didn’tknow what to think because steroidsusually helped to calm down mycolitis. My Mum was crying in thedoctors and I had to stay strong forher although I could have quite easilyjoined her.

We arrived at the hospital and I wasgiven a side room. Over the next fewdays my colitis was getting worse andI was told that the surgeons would bein to see me soon to talk abouthaving a stoma. My mind was all overthe place! I didn’t want to have an

operation. After a few visits from thestoma care nurse I was gettingprepared for what would change mylife forever.

The inevitable happened and I wokeup in intensive care. I didn’t want toeven look at my scar. I was soon off toanother side room and a few dayslater I started to feel unwell. It cameto the point where I couldn’t evenmove. After getting more tests theycame to conclusion that I hadperitonitis. Emergency surgery! I wasrushed down to the operating theatre.I could see all the surgical equipmentthat they were about to use on me; Iwasn’t scared this time I just wantedto be well!

A month or so passed and I camehome. Within a few months I had fullyrecovered. I thought about doingcollege again and starting over. Ibegan my college course and within afew of weeks things weren’t goingwell; I was struggling, and finding itdifficult to talk to the others on mycourse. Me and my mum went to theGP again to see if there wassomething wrong. After talking to himand filling in a questionnaire I wastold that I was depressed. He put meon some anti-depressants and Idecided it was best if I stoppedcollege for a while.

Within a couple of months I felt a bitbetter but was really bored at homeso I started to do some volunteerwork at a special needs school. I reallyenjoyed helping the disabled childrenlearn. I stayed at the school for therest of the year.

After an appointment with my Stomacare nurse she told me aboutBreakaway and that I could talk toother people with stomas and myfamily could talk to other families. Iwasn’t sure at first, as I am a very shyperson.

As a family we decided to go to aBreakaway weekend not knowingwhat to expect. Everybody was so

From L to R: Joe pictured with Mum and sister Tara

T I D I N G S | W I N T E R 2 0 1 1 | 3 5

Hannah chats about Breakaway...

Breakaway has been really busyand very popular this year! At theColostomy Association Open DaySue Hatton organised a collectionfor Breakaway. It was very kind!Now Breakaway can pay for somemore kids to come along...I even went up on stage for the presentation!

It was so nice to see some of myBreakaway friends at the Open Day,even if Fergus played knock a doorand run on our hotel room doorthe night before!

When my Nanna was in hospitalrecently, in the next bed to her wasa lady called Dot. Dot has aColostomy and was quite poorly.Nanna told her all about Breakawayand she gave me £10 to puttowards the Christmas party. Dottold me that she has alwayswanted to be famous she is reallygood fun. So I promised that Iwould mention her in this article.Hope you get better soon Dot!!!

I am very busy at the momentbecause I am now the editor of myschool newspaper and I am addingsomething about Breakaway!

I hope everyone has had a niceChristmas time and wish you all aHappy New Year!

HannahAged 9

Call us on: 07903220040 or email us on: break.away@tiscali.co.ukor visit our website on: www.breakaway-visit.co.uk

If you would like to make a donation to Breakaway...visit: www.justgiving.com/breakawayvisits

friendly it was such a relief to knowthat I wasn’t alone. I had so much funtoo! There was canoeing, wallclimbing, zip wire, a huge obstaclecourse, and a small petting farm.

Just to talk to other teenagers reallyhelped me, and I have made somefriends too which I was struggling todo at college. For me Breakaway hasreally helped me be more confident. Ilove Breakaway and simply can’t waitfor the next one!

CA Open day...Tara speaks out

I like to think of myself as quite aconfident and outgoing person. Butwhen I found myself standing in frontof an audience of about 300 peopleat the CA Open Day preparing to readmy speech I found it a littleintimidating! But because Breakawaymeans so much to me I never feltmore comfortable!

What made it easy was beingsurrounded by my friends. The specialfriends I’ve made at Breakaway!Having them with me on stage mademe feel more confident especially as Iknow I’m not the only sibling who hasfaced worries about their brother orsister.

My brother was 17 when he had tohave an ileostomy; it was a big shockfor all of us. What made it a biggershock was he didn’t even have 24hours to come to terms with whatwas happening. Everything was such ahead rush but if it meant saving hislife then the choice was taken awayfrom us.

I never thought anything would be thesame again, I knew things would bedifferent but never different in the

good way, and Breakaway is who Ineed to thank for that. I really don’tknow where we would be right now ifit wasn’t for Breakaway. The supportand all the fun we have, as a familymixing with other families who havefaced similar difficulties is amazing. It has changed our lives for the betterand our weekends away withBreakaway are something we relish!

Join us for ournext Breakaway

Weekend!We’re going backto the forest!

YHANational ForestEast Midlands29April 2011for 3 nights

Put some smiles on young faces,chat and share your experiences

in a relaxed friendlyenvironment, but more

importantly come and have fun!

The cost of three nights fullboard accommodation is just

£165 per person. All rooms are2-4 beds and en-suite.

There is also a bar, bistro andcoffee shop.

For further information on thisand future events.

Call us on 07903220040Email us on

break.away@tiscali.co.ukVisit our website on

www.breakaway-visit.co.uk

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

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

Gutless Kayaking...Enjoying the challenge and pushing the boundaries...Justin Hansen and friends successfully paddle the 240 milesof canal between Manchester and London! Justin was diagnosed with Crohn’s disease in 2003...here Justin follows up on his previousarticle and tells us about his experiences whilst on his remarkable adventure...

In the autumn edition of Tidings Italked about my forthcoming kayakingtrip. My plan was to kayak fromManchester to London, symbolicallylinking the UK's two specialistintestinal failure hospitals, HopeHospital in Salford and my hospital, StMark's, in Harrow. Canals run fairlyclose to both hospitals and I thoughtit made sense to simply paddle fromthe one to the other. Once that wasall decided the name for the tripseemed fairly obvious: GutlessKayaking.

I have Crohn's disease and have lost alot of intestine over the last sevenyears. So much so, that I now haveshort bowel syndrome. This meansthat in addition to having a stoma Ialso need intravenous nutrition (TPN)to survive. Most food and drink makesa rapid trip through what's left of mysystem so I have a very high volume,and liquid, output. Leakages are aconstant threat and I haven't had100% faith in any of the stomaproducts that I've used to date. I knewthat there would be a lot ofunknowns on this trip especially interms of when and where I would beneeding to change my stoma bag. Forthis reason I decided that it would bebest to use a bag that I could changeor empty as quickly as possible.Ordinarily I tend to use a DansacNova, one-piece, drainable bag. Butfor the kayaking trip I swapped to thetwo-piece Convatec Natura bag. Theflange on this has a mouldableflexible hydrocolloid collar, which onejust needs to pull into shape beforesecuring around the stoma. To this Iattached a urinary night bag. Undernormal circumstances a urinary nightbag would not be appropriate sincethe diameter of the output valve isvery small and tends to get blockedeasily. But, thanks to my short bowelsyndrome and relying entirely on

intravenous nutrition, I was able tosurvive easily for the twenty days ofpaddling without eating anything! Thisensured that my output was of aliquid consistency and the bag didn'tblock. Another benefit of not eatingwas that the volume of output wasgreatly decreased, which in turnmeant less leakages (only had one)and less emptying.

The trip was organised as afundraising event for St. Mark'sFoundation. This is the charitable armof the hospital and carries out cuttingedge research and educationalprogrammes in bowel disease. I'vespent a lot of time there as an in-patient and am always impressed bythe team ethos and knowledge of thestaff. Before setting off, I needed to

‘It was amazing to meet so many people along the way who asked what thetrip was all about, and to find myself talking to total strangers about the prosand cons of varying stoma products. I was also staggered to discover howmany others either were or knew an ostomate’.

talk to with my doctor, pharmacist,nutritionist and dietician about how tomake this trip possible. TPN is a life-support system for me - I have to beattached to a machine for 12 hours aday. Whilst I was kayaking I needed tobe attached to it for 24 hours a day,for 20 days. The team at St. Mark'saltered the nutritional content of theTPN in order to give me the bestchance of completing this challenge.I needed to be provided with a lot ofmedical supplies en route, so BUPAHome Healthcare delivered theseproducts to me on the canals everythree days. They also installed a fridgeon our support vessel since theintravenous nutrition needs to be keptbetween 2 and 8 degrees.

As a further sign of support from St.Mark's, my consultant gastroenterologi s t ,Dr. Simon Gabe, and consultantradiologist Dr. Michele Marshall, metus in Manchester at the start andcycled the whole route back toHarrow. It only took them a couple ofdays. A few of the doctors from HopeHospital also came along to wave usoff.

After the very long build up (it tookme and my sister, Victoria, about 6months to organise) and a great sendoff we finally got the boats into theBridgewater canal and paddled away. Iwas accompanied at the start by threefriends and we quickly found outwho's clothing wasn't waterproof. Itrained on 15 days out of the full 20.We saw some beautiful countryside,lots of nature (dead and alive), 166locks, a fine selection of floating fruit

and veg, and of course a couple ofabandoned shopping trolleys. I thinkour thorough preparation paid offbecause there were no calamities, justa few scrapes and aching muscles.The roll of duck tape was the mostpopular accessory in the kit bag: usedas bandaging for cuts; to make animpromptu rudder; repairing tornclothing; securing bags of intravenousnutrition to the inside of my rucksack;to protect blisters etc. It was amazingto meet so many people along theway who asked what the trip was allabout, and to find myself talking tototal strangers about the pros andcons of varying stoma products. I wasalso staggered to discover how manyothers either were or knew anostomate. We managed to collect over£400 from these little chats.

For me it was a fantastic feeling to betaking part in an endurance trip likethis, having spent so many yearsrecently in hospital. My consultantgastroenterologist suggests that I mayhave performed a world record, sincehe's not aware of anyone else onartificial nutrition completing this typeof endurance event before! A coupleof years ago I never would haveimagined that I'd be doing this. Notjust because I was in such a poorstate but also because of my life longaversion to organising things. I wouldprefer to be able to simply head offand deal with problems as they arise.I constantly need reminding thatthings are different now, and I have tosomehow accept the changes. Tryingto achieve a decent quality of life is anever-ending battle and sometimes it

seems as if the effort, frustration,documentation, exhaustion, setbacks,embarrassment and indignity is all toomuch. However, in some perverse waythere's a part of me that enjoys thechallenge of trying to push theboundaries of what we're led tobelieve is our lot.

I don't think I'll ever be able to thankeveryone who made this possible forme. But my sister, Victoria, andgirlfriend Jane need a special mention,as does Richard Carpenter from theNational Association of Boat Owners.

Last week I went up to St. Mark's forthe handing-over-of-the-chequeceremony. To date Gutless Kayakinghas raised over £20,000 for researchinto bowel disease, and the figure isstill rising.

For more information about Justin andhis adventure...Gutless Kayaking, visithis website:www.gutlesskayaking.com

T I D I N G S | W I N T E R 2 0 1 1 | 3 7

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

I N C O N V E R S A T I O N A C O L O S T O M A T E C O M M E N T S

A Colostomate Comments...

A regular column from a colostomate’s perspective, which raises, researches and discusses issuesassociated with living with a colostomy. If you would like ‘Tidings’ to focus on a particular topic orissue that affects you day to day, or would like to comment, please write in or email: associate-editor@colostomy association.org.uk. We look forward to hearing from you.

To tell or not to tell?

There was a time when no onementioned breast cancer, but todayeveryone is quite open about it.Maybe, sometime in the future,bowels will also not be a taboosubject and no one will raise aneyebrow when we mention the wordcolostomy. For that to happen,ostomates probably need to make thefirst move. There are those who arequite happy to speak out: Glyn Davies,MP for Montgomeryshire, and VanessaDenvir, CA volunteer, both spoke atthe CA Open Day. Vanessa has alsoappeared on the Channel 4programme “Embarrassing bodies”.But what about the rest of us: do wetell people we have a colostomy, ordo we prefer to keep it a secret?

To answer this question I asked theostomates who attend our localsupport group. This resulted in a livelydiscussion.

‘I want people to know me, not mystoma,’ said a member who has beenattending the group for many years,She never mentions her colostomy insocial situations: she fears that whenshe tells people their eyes will driftdown below her belt to search forsigns of her bag: she doesn’t want tohave to explain what a colostomymeans, she doesn’t want people’spity.

A relatively new colostomate told ushow he makes no secret of his stoma.For him the last few years have beena struggle but he is proud of what hehas gone through. When he explains,people are full of admiration; theylook at him and say, ‘I just can’t

believe what you are telling me.’ Inhis experience when people knowthey are incredibly supportive andwhen problems occur they can bevery understanding. By telling peoplehe has built upon a fantastic networkof friends and this was part of thehealing process. Another reason to beopen and discuss things is that wenever know when we might needsupport in the future if we developany problems associated with thestoma.

‘Yes, but you need to be selective andchoose the right moment to tellpeople,’ another man added. He toodoesn’t believe a stoma is a stigma,but he doesn’t tell everyone. Hisimmediate family and close friends allknow. He has played tennis with thesame group for many years, in factbefore his operation, and they allknow about his stoma. Recently heand his wife joined a badminton cluband he would be quite happy to tellanyone there about his stoma -should the need arise. ‘That’s right,’agreed another colostomate. ‘I wouldonly mention it if the subject comesup. I tell people on a need-to-knowbasis.’

‘But perhaps we all worry too muchabout what people think,’ someonepointed out, ‘when, in reality, otherpeople are far more preoccupied withgetting on with their own lives.’ ‘That’sright,’ agreed someone else and wenton to tell us how when he first hadhis colostomy he felt he needed totell everyone, but now they’ve allforgotten that he has a stoma. Foryears he and his wife have visited aGreek island for their annual holiday,and spent time on a nudist beach;after he had his stoma he continuedjust as before and no one took a bitof notice of his pouch.

After the meeting a female ostomatetold me how she doesn’t try to hideher ileostomy when she is in thecommunal changing rooms at thegym - just turns her back on the otherpeople present, which, for the sake ofmodesty, even a non-ostomate woulddo. When trying on new clothes shehas always sought a sales assistant’sopinion; now she points to her righthand side and says, ‘Well of coursenow I have this. Can you see it?’ Mostof them understand what she’stalking about and will reassure herthat if she hadn’t told them theywould never have known.

So to get back to the originalquestion: To tell or not to tell?It seems that we all have our differentways of coping with a stoma. Some ofus will just tell our nearest anddearest - friends and acquaintancesonly on a need-to-know basis. Othersare quite open about it, and keen totell everyone how grateful they arethat a stoma has saved, or improvedthe quality of, their life. It is thesepeople who will spread the word andmaybe in the future no one willconsider bowel problems and stomasembarrassing.

written by Rosemary Brierley - Associate Editor

Editors Comment

If you have any issues you wouldlike raised in this column

please email:associate-editor

@colostomyassociation.org.uk

or write to: Associate-Editor

Tidings Colostomy Association

2 London Court, East StreetReading RG1 4QL

T I D I N G S | W I N T E R 2 0 1 1 | 3 9

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 CA

Tidings magazine has been a lifesaver to me. I had my colostomy forcancer of the rectum in 2008 justafter retiring from thirty years in theNHS. Ernie Hulme gave me my firstcopy as I left the surgical ward forthe last time. I was then looked afterat home by the dedicated Julie Rust.

From the start I was having leakageproblems and spent a while in myshed with a hacksaw and fileattempting to make a plastic clampto fit around the bag for moresupport. While having a breatherfrom this I had a good read ofTidings and saw the Sash beltadvertised. I could not believe myluck. This has given me confidenceto carry on as normal and Isometimes forget I have a stoma.

When you look at the ticks on theReaders’ Feedback Questionnaireyou will see that I read Tidings fromcover to cover. I’ve learnt a lot fromyour contributors and the fortitude ofsome people has to be read to bebelieved.

Since reading of how others havecoped with their problems with theaim of living a normal life - notforgetting the children who have therest of their lives to do the same - Ihave decided not to moan aboutanything ever again. It is now quitesome time since my wife called meVictor Meldrew!

All the very bestYours sincerelyP. C. (Mr)

Dear Editor

At home and on holiday whilechanging my stoma bag I burnincense sticks. I simply stick one in atablet of soap. The ash falls into thewash basin and is simply rinsedaway. I find the incense sticks giveoff a gentle perfume, not as obviousas an aerosol spray. The sticks arequite cheap - approx £1 for 60 - andso peace of mind.Hope this tip may help my fellowostomates.

With thanksS.J. (Ms)

Dear Tidings

I am a very young sixty-three yearold; I love clothes, dancing, musicand travel. To me, image is veryimportant: make-up hair and clotheshave to be right before I will ventureout. In 2005 I had to make thedecision to have a colostomy - thereason being acute diverticulitis. Ihad suffered quite a few years but ithad got to the stage where the painwas unbearable and then I becameincontinent, but it was my decisionto make.

It was going to be a simple keyholeoperation, but things did not go toplan. I had to have a large incision asthey could not get the bowel to thesurface. After a few months thiscaused a parastomal hernia whichwas operated on in December 2006.Within a few months the hernia wasback and in June 2008 the herniastrangulated and I had to have thestoma moved to my right sideleaving a small hole where the oldstoma had been. This caused

problems for months and then theyfound there was mesh left in fromthe hernia repair. Again the herniacame back on the new stoma site.My consultant has offered to operatebut at the moment I am trying to livewith it and I am coping.

Over the time I have had mycolostomy I have found a lot ofcomfort from Tidings. It alwaysseems to answer my questions aswell as giving useful information. Iwould love information aboutstarting a support group as theredoes not seem to be one in ourarea. I have spoken to my doctor andhe thinks this would be a good idea.

My operation was done at the RoyalShrewsbury Hospital and their helpand support has been second tonone. They are always there if youhave any problems or need help.

Yours sincerelyC. O. (Ms)

Rosemary replies: A factsheet forostomates who are consideringsetting up a local support group isavailable from CA head office.

Dear Editor

I was diagnosed with bowel cancerin 2008. Before I went for theoperation I had chemotherapy andradium treatment to shrink thetumour. I had my operation whichremoved part of my bowel and themuscles in the lower part of mybody and closed my back passage.Then this had to be reopened due toan infection and a bad discharge. Iwas in hospital for five weeks afterthe operation, then home for three

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

Readers’ writesweeks, back in for two weeks, homefor a short time, then back for moretreatment. In all I was in theoperating theatre five times.

Eventually I was fitted with a VAXmachine which drained the fluidthrough tubes into a canister. I wassent home with this machine anddistrict nurses came in every day.Eventually it cleared up.

I feel great now and I would like totell others not to give up even if it isa hard struggle. I had a lot of helpfrom my wife and family. We havebeen on cruises and look forward tothe next one. From reading yourletters and articles I feel that I amnot alone and can understand a lotmore from your information. I wouldalso like to say there is always lightat the end of the tunnel.

Yours faithfullyB. A. (Mr.)

Dear Editor

Thought you might like to hear mystory. I had an abdomino-perinealresection, removing anus andrectum, for a non malignant growthresulting in a permanent colostomy. Ijust wanted to say that allcolostomies are not the result ofcancer. Fortunately, I feel better nowthan I have for years. My colostomycauses me no trouble usually.

I have been on a cruise to Icelandalone and am setting off for anothercruise around Britain in August. I feelthis is the best way to travel with thiscondition. However, do not eat toomuch. It is very tempting but canhave a rather ghastly outcome.

Thanks for your magazine. I look forward to the next.C.L. (Ms)

Dear Editor

I have received Tidings for about fouryears. I haven’t often read it cover tocover as it all seems a little daunting,but one thing has stood out:colostomates seem to have a hugesense of humour, which I, suppose,can be a big help - one certainlyneeds it.

I was born seventy-six years ago withan imperforate anus. There was nota lot that could be done in thosedays and my mother didn’t realisesomething was wrong; she justthought I was a grizzly baby! Thesedays it would have been put rightstraight away. My grandmother whowas changing me noticed somethingbadly wrong. This was four weeksafter I was born. I had lots of thingsdone to try and rectify the problem.By the time I was eight years old I’dhad thirteen operations and acolostomy.

I did have it reversed. I owe a greatdebt to the surgeon, a pioneer inplastic surgery at the time. I was inhospital during the early years of thewar. Other patients were airmenbeing treated for burns - trying tomake them faces where they hadnone. So that put things inperspective, even for me as an eightyear old child.

I’ve experienced all the problems oftrying to control my bowels - alwayshaving accidents. Four years ago itwas suggested I should have acolostomy, but since then I have hadmany health problems and, quitehonestly, couldn’t face anotheroperation. I’ve lost count of howmany I’ve had - at least forty. I justfelt I had to write to say that I’m sovery glad people can get the supportthey need these days.

I still live a full and happy life. I’mtold I have a wonderful sense ofhumour too. As I said at thebeginning, we need it.

Yours faithfullyM.D.R. (Mrs)

Dear Tidings Editor

I am a fifty-one year old woman whosuffers from a medical conditioncalled Fowler’s Syndrome. ‘What isthat?’ I hear everyone saying, just aseveryone does! Well it is a conditionthat affects only females agedbetween twenty and fifty years oldand is basically a total failure of thebladder’s sphincter muscle.

In 2005 I underwent surgery for aNeurostimulator Implant which is adevice that sends electrical pulsesdirectly to the bladder stimulatingthe sphincter and in returnpromoting normal voiding. I was likea new woman after almost threeyears of catheterisation andinfections.

Then in October 2007 my bowel alsostopped working. I found myself inhospital with impacted constipation.No one at the hospital had everheard of, or knew anything about,Fowlers Syndrome. So I spent thenext twenty-eight days being triedwith laxatives after undergoing testafter test: endosonography, musclebiopsies, scans, X-rays - examinationafter examination all with nodiagnosis, only slow transit. Aftertwenty eight days I was referred to StMarks Hospital, still suffering fromimpacted constipation and vomiting.

It was agreed that Fowlers Syndromewas the cause of my problems and Iwas introduced to the Peristeenirrigation system - A five inch rectalcatheter is inserted into the rectumwhich is held in place by thecatheter balloon, water is thenpumped into the bowel. I receivedthe machine in January 2008 andused it at home for over a year. Thenin May 2009, whilst using theirrigation system, the catheterballoon burst while inserted in myrectum. I was readmitted to hospital;again no one knew or understoodmy problems or medical condition.After twenty-two days I finallyunderwent surgery for a colostomyand within two days was back athome recovering.

C H A T B A C K

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

Readers’ writesWithin days I started to get problemswith liquid faeces from the stoma:everything I ate seemed to pourthrough me. Also I still had faeces inmy rectum. My own GP has alwaystried to be helpful andunderstanding of my problems buthe is not a bowel specialist.

Fortunately I have since found awonderful area stoma nurse calledMarie Culleton; she has been sosupportive and tried so hard clearingthe impacted faeces from myrectum. We did try the stomairrigation system which unfortunatelywas unsuccessful. I also have a verylarge parastomal hernia. Maria talkedto me about the problem andordered some supportive underwearwhich has been a great help. I andmy family wish to thank her for hercontinuing care.

B.G. (Mrs)

To Sue Hatton, Executive TrusteeRe: CA Open Day, Gaydon

Dear Sue

I must congratulate you on the OpenDay. It was the first time I had beento anything like it and came awayvery impressed. I met so manypeople, saw so many products andideas, as well as listening to somereally good speakers. Then to top itall had a humbling conversation witha young man from the Breakawaygroup. Altogether a very rewardingday.

Yours sincerelyB. K. (Mr)

Dear Madam

Your article “Irrigation can be theanswer…but not for everyone” in theSpring issue of Tidings is veryencouraging for people like us. I hada colostomy operation three yearsago. Since then I have been using a

two piece system with a flange anddrainable pouch. I have also slighthernia.

I feel very apprehensive abouttravelling alone due to my anxietyabout how to cope if the bag is fulland needs changing. This isparticularly problematic especially ifthere is loose motion. Would youplease provide some practical adviceon this matter.

It would be helpful to know what Ishould carry with me or what Ishould do when I travel longdistances by train or aeroplane. Howshall I dispose of the pouch andother material? I shall be muchobliged for your help.

Yours faithfullyP.K.M. (Mr)

Rosemary replies: Many people whohave a colostomy find it easier toempty or change their pouches in adisabled toilet where there is awashbasin and a bin for disposingof used pouches. Some of thesetoilets are kept locked but you canobtain a key from CA head office(see details on Page 48) CA alsoproduce a leaflet, Travel Advice,which contains many tips fortravellers including a list of what tocarry with you. Used pouches andwipes etc. can be sealed inside adisposal bag and placed in thewaste bin in a train or aeroplanetoilet.

C H A T B A C K

Thank you for your letters and e-mails. Please keep themcoming. We will do our best to

print them or we may hold them over for a future issue.

Editing may be required forreasons of clarity or space. In the

interests of confidentiality we willpublish only your initials and not

your full name, unless you give uspermission to do so.

If you want to be involved in the next issue of

Tidings magazine - simply drop us a line

via email:a s s o c i a te - e d i t o r @

colostomyassociation.org.uk or write to:

Associate Editor Colostomy Association

2 London Court,East Street,

Reading RG1 4QL

Look out for our Readers’ Button to see where readers

have contributed to Tidings

YoursRosemary Brierley

Associate Editor

Tidings magazine is available inPDF format. Simply visit:

www.colostomyassociation.org.ukand register to download

or email the editor direct at: e d i t o r @ c o l o s t o m y a s s o c i a t i o n . o r g . u kto organise a PDF to be sent to you.

Readers’PANEL

contributor

Editors Note:Do you suffer from rectal pain?

If the answer is Yes...please get intouch. The CA is producing aleaflet about rectal pain followingstoma surgery. We would like toinclude patient experiences...please contact the AssociateEditor details opposite.Many thanks!

Irrigation and you...Sue Hatton Executive Trustee writes...I feel I must reiterate that those of us who areable to irrigate do not feel superior to those who choose not to or cannot for whatever reason. We just feel lucky that we were given the option and we want morestoma care nurses to recognise ‘the efficient management of a colostomy is a matterof profound importance to those patients who need to spend the rest of their liveswith one’. (Anon quote 1958). Thank you all for your valuable contributions please dokeep them coming.

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

EditorsComment You can learn

more about irrigation from our

leaflet - ‘An Introduction to

Irrigation’ to obtain your copy

telephone: 0118 939 1537

contact:Colostomy Association

2 London Court East Street Reading RG1 4QL

e-mail:cass@colostomyassociation.org.uk

We had such an amazing CA OpenDay! Janet Bradley, who wrote in thelast issue, was inundated withenquiries as she discussed irrigationwith attendees at the designatedspecialist area.

Janet writes: “What a successful OpenDay it was at the Heritage MotorCentre, Gaydon on the 16th October.So many people must have workedextremely hard to set it all up. Thevenue was so spacious andwelcoming!

I manned the CA specialist area standand spoke to many interestedcolostomates about irrigationexplaining how it works. I hadequipment kindly provided by threedifferent companies - Coloplast,Dansac and B.Braun. I demonstratedthe equipment and explained that myirrigation method takes me 30 to 50minutes a day.

The response was overwhelming! Atone time I had four people listening tomy mini-talk and several others tryingto get nearer. Fortunately, SteveBonham a CA volunteer came to myaid and together we were busy thewhole day. Both Steve and I enjoyedgetting the message out to everyoneespecially as irrigation can take awaysome of the problems and stressinvolved in having a colostomy. I amsure the interest was as a result of thetalk given by our President Mr. BillHeald OBE who is fully in favour ofirrigation”.

Helen Johnson writes: At first I wasvery apprehensive; I just couldn’timagine putting the cone into thestoma as well as dealing with all theother apparatus! So I procrastinatedand found excuses until my daughterpushed me into seeing my stoma carenurse. I have arthritic hands but foundthat I could manage the equipmentvery well. Like many others I irrigatedevery day to start with. The more Iirrigated the more confident I became.I was learning quickly! I found thatthere didn’t have to be a regular pool

of water on the floor and I didn’t haveto stay on the loo for the wholesession. I could walk around mybathroom, with the sleeve rolled andsecured after inserting the water. Icould clean my teeth and give them agood flossing; I even had time to puton my makeup!

My next challenge is a cruise. I wouldlike some advice about the watersupply on ships, especially as onecontributor to the last Tidings referredto using bottled water abroad. Ithought you had to use tepid water?So how do you warm bottled water iftravelling? I hope my enthusiasm forirrigation is coming through in thisarticle. It has changed my life, myteeth are much cleaner, my dentist isso impressed and the bathroomsparkles as I emerge from my specialhour.

Many thanks to Sue Hatton and theColostomy Association for bringing tothe fore such an inspired campaign...Helen Johnson, Falmouth Cornwall.

Sue writes: Have we got any tipsfrom “Cruising Irrigators!”

Bob Buckley comments: I use bottledwater on cruises and warm it using atravel kettle.

Nelson Swinney writes: In late 1987 Ihad a colostomy and in early 1988started to irrigate; unlike some, Iirrigate daily, which means that eachmorning I can catch up with somereading! My purpose for writing is toanswer queries in the autumn issue ofTidings several readers expressed theirconcern about the cleanliness of theirirrigating equipment. From thebeginning this caused me concern andonce they became available, I regularlyused Tristel surface cleaners to ensurethat all surfaces that might come intocontact with my hands or equipmentwere disinfected on a regular basis.Fortunately “Tristel at home” is nowavailable not only for those whoirrigate but for bag users too. Detailscan be found at www.tristel.com

Janet Bradley requests someone’shelp to sort out her confusion overhot water.

Janet writes: “In one of themanufacturer’s instructions forirrigation, they illustrate filling thewater container with water from thehot tap. I am concerned because Ialways thought water from the hot tapwas not potable (suitable fordrinking). I therefore always boil waterfrom the cold tap. At Gaydon, I metanother irrigator whose surgeon hadtold him that it was not dangerous touse water from the hot tank becausebacteria are not absorbed by the largeintestine. When I lived abroad I wastold to clean my teeth with boiledwater, even if I didn’t swallow itbecause bacteria could be absorbedthrough the mucous membrane in themouth. When travelling overseas I usebottled water. I immerse a small bottlein a washbasin of hot water until it isbody temperature.

Sue writes: I believe that mostirrigators use water from the hottap. Many of us have done this foryears, without even consideringwhether it was safe or not. Again itis a matter of choice. Do write inand tell us your experiences!

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

SASH stoma support and

parastomal hernia belts are

suitable for Colostomy,

Ileostomy, Urostomy,

Umbilical and waistline

Incisional hernias. The SASH

stoma hernia belt has been

designed and developed by

an ostomist to give support

to a hernia that surrounds

the stoma without

restricting normal body

movement or limiting

muscle use.

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

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

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 N u r s e

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

Stoma Care University Hospital

of North Staffordshire

Q: My mum has recently had astoma reversal on 30/10/10. She hadAdenocarcinoma of the rectum inDecember 2009. She is in pain. Heranus is sore and she has piles. Shefeels like she needs to go to the toiletbut each time she does there is onlya small amount of liquid stool on thetissue and nothing in the toilet. Shegets no sleep and is running to theloo every 10 minutes for a slight biton the toilet paper. The surgeon toldus that where the join was hadnarrowed and so they gave it astretch in theatre. When mum getsthe feeling she needs to pass wind orpoo she says it’s so painful. After shereturns from the loo she is all sweatyand shaky. She also has a tear,fissure, for which she has Rectogesic.She is still on 10 ml Oramoph,Zomorph and Paracetamol. I don'tknow whether what mum isexperiencing is constipation ordiarrhoea. Since the op she has notdone a poo with any real volume. It’sonly been the slightest amount on thetoilet paper. Does she needLoperamide or Lactulose? I am sorryfor troubling you but hope thisscenario seems familiar to you so youcould perhaps recommend somethingor reassure us.

A: Obviously I am not aware of thefull surgical history of your mum’scase and therefore it is difficult toadvise on this problem. It is obviousfrom what you are describing thatyour mum is really struggling and is inpain when she passes her stool. Italso sounds like she is not emptyingher bowel completely. I wouldsuggest a review by the consultantagain as it may be that theanastamosis (join) has narrowedagain and this is what is causing the

distress. The solid stool may not beable to pass through this narrowingand therefore she is only passingloose stool into the toilet. I would notsuggest taking any medication to alterthe bowel action without advice fromthe surgeon who did the operation. Ihope that you are able to get someanswers and relief for your mumsoon. All the best.

Q: I have had a colostomy for fouryears after contracting necrotisingfasciitis following surgery for a

hysterectomy. I have had manysurgical procedures since to try torepair the damage and it is only thisyear that I have been fit enough toget back to exercise classes. I havebeen swimming and walking but I amnot sure what I can and can't dowithout harming the colostomy. Ihave two stomas, one that deals withfaeces whilst the other emits mucusonly. I went to a salsacise class thisweek and thoroughly enjoyed it.There is much wiggling of hips andstretching of arms. Great fun!! Nextweek the coach says we will dotummy crunches. I think that thismight not be wise for me. What isyour advice?

A: Well done, you are an inspirationto all ostomates who wish to get backto doing exercise. From what youdescribe you have a colostomy and amucous fistula. After this length oftime following surgery for stomaformation you should be able toundertake any activity as long as youstart off slowly- the skies the limit asthey say! Obviously if you undergofurther surgery for anything youwould need to follow the advice ofthe surgeon at the time as to when torecommence exercise. When tryingsomething new I would suggestspeaking to the trainer and explainthat due to some abdominal surgeryseveral years ago you would need totake things slowly and may not beable to reach the levels they mayexpect immediately. Start off slowlyand gradually build up, ensuring youdo not over stretch initially. Howeverthere is no reason why you shouldnot be able to do any activity with acertain degree of caution to start with.

Q: I had a reversal 7 years ago andever since my stools have remainedvery loose and very offensive (smelly).This really is an embarrassingproblem for me. Are there anymedicines or alternatives I could taketo help solve this problem? Also,could you send me a proper dietsheet as everything that I seem to liketo eat are the things I am notsupposed to have!! Please help me.

Julie Rust became Tidings Nurse inDecember 2004. She has answeredreaders’ letters and e-mails in alltwenty-five issues which have beenpublished since then. We lookforward to many more years ofpublishing her very sound advice.Thank you, Julie, from the Editorialteam and the CA Trustees.

Your medical questions aboutstoma care management are alwayswelcome and important to us.Questions received by the Editor orCA are passed to Julie Rust RGN.Dip, N. MSc. CNS Stoma Care toreview and answer. Answers arepublished in the next issue ofTidings.

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

A: You do not say what surgery youhad. Dependent on the amount andtype of bowel you had removed thestool may be loose and erratic. Achange in your diet may help and forspecific information it may be usefulto ask your GP to refer you to adietitian to discuss this. Also certainmedication can be suitable forpatients to take to regulate the bowel.The first one to try is called Fybogel. Itis a powder, which you mix with aglass of water, stir well and drink. Itneeds to be taken regularly twice aday. It is also important to ensure youdrink plenty whilst taking this. Youcould also speak to your local StomaCare Nurse who will have access toyour medical notes and will be ableto give specific advice taking intoaccount the actual surgery youunderwent.

Q: Dad is 90 yrs of age. With anumber of issues he copes with thebag remarkably well. However we dohave a number of occasions whenthe discharge cannot be held whenhe is changing the bag – leading to avery embarrassing situation becausethe faecal matter cannot berestrained. Recently we have theproblem that he is changing the bagvery frequently – everything that heeats or drinks quickly finds its wayinto the bag. He would normally havea diet that is not heavy – a littlebread or toast or maybe cornflakes inthe morning; sandwiches or lightsalad at lunch (which could becheese or meat based plus greens);and more than likely fish for theevening meal. Today he has had onlya piece of buttered bread thismorning; was encouraged to havetwo pieces of toast for lunch andwould only have cornflakes tonight.All of that and any drink that he hadcaused an almost immediate filling ofa bag necessitating change of thebag. I would welcome any help. Hehas just had a rectal prolapsecontained; the rectal discharge thenwent berserk for a while but hassettled – he still has one and has hadsince having the colostomy operation.Any advice would be very welcome.

A: It is not unusual for a stoma ofany sort to work when changing thebag. Patients do not have the abilityto control when the stoma acts andtherefore on occasion the stoma maywork when you do not want it to.Certain foods can cause a looseroutput but from what you describe

your dad has quite a bland diet.Certain fluids can also cause a loosemotion, especially fruit juices.However it is important that he drinksplenty of fluids even when the outputis loose to ensure he does notbecome dehydrated. Is your dadtaking any sort of food supplementsas these can also lead to a looseoutput? If there is no obvious dietaryreason for this loose motion it maybe that a sachet of Fybogel takenmixed with water twice a day mayhelp to regulate the bowel. Reducingthe amount of food he eats will onlymake the problem worse; it is thetype of food he eats which will causea problem not necessarily theamount. Keeping a food and fluiddiary may help as it will identify anyparticular food, which could berelated to a loose motion, and he cantherefore reduce this particular culpritif he wishes.

Q: The skin around my stomableeds quite a bit from time to time. I am using LaVera cream (excellentfor normal day-to-day maintenance)and when I get bleeding I use thecream and then sprinkle onOrahesive. I am keen to know whatmore I can do to prevent instead oftrying to cure!

A: When you have washed and driedthe skin surrounding the stoma Iwould try a skin barrier protectorspray or wipe. This will put awaterproof layer onto the skin, whichwill then protect it against the outputfrom the stoma. There are manydifferent ones available onprescription including Cavilon(available as a spray, a wipe or afoam applicator). There is also a widechoice made by the ostomycompanies and you can telephonethem to get some free samples to tryto see which you feel is best for you.If the soreness and bleeding isparticularly bad then the use ofOrahesive powder and possibly a sealsuch as SecuPlast (Salts), Cohesvie(Pelican) or Adapt (Hollister) can beuseful. If the soreness does not settlethen it may be due to an allergy anda review by your Stoma Care Nursecan confirm this and they would thenbe able to advise more specifictreatment and a change of applianceto solve the problem.

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

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:c a s s @ c o l o s t o m y a s s o c i a t i o n . o r g . u k

editor@ c o l o s t o m y a s s o c i a t i o n . o r g . u k

Editors Comment

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

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

• National Association for Colitis and Crohn’s diseaseTel: 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:w w w. b l a d d e r a n d b o w e l f o u n d a t i o n . o r g

• Bowel Cancer UKTel: 020 7381 9711Email: admin@bowelcanceruk.org.ukWeb: www. b o w e l c a n c e r u k . o r g . u k

• Beating Bowel Cancer UKTel: 08450 719 300 (Lo Call rate)Web: www. b e a t i n g b o w e l c a n c e r. o r g

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.Contact head office: 0118 939 1537for an application form.

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

New from RADAR - coming soon...National Key Scheme Guide 2010Pre-order Price: £9.49

Once again the ColostomyAssociation attended this specialconference. For those of you whomay not know, WCET UK is anassociation of expert professionalnurses who care for people withostomy, wound or continence needs.The WCET UK conference is heldannually and the venue for 2010 wasthe Bournemouth InternationalCentre.

Entitled “Are U Ready?” WCET UKconference offered healthcareprofessionals an opportunity to sharecomplex cases both physical andpsychological. Keynote speakerscovered topic areas such as:

• Inflammatory Bowel Disease• Colorectal Cancer• Advanced Practice

Mary Thomas, CA Trustee, and GillHerbert, CA Office Administrator,attended as unfortunately Sue Hatton,Executive Trustee and Richard Bray,General Manager, were unable toattend due to ill health. Jane Wood,Tidings Editor attended as MarketingConsultant for the CA.

Attending WCET UK, gives the CA anopportunity to meet stoma carenursing professionals in an inspiringand motivational forum. The CA hasmuch to gain from this conference.Valuable relationships are forged andpatient’s perspectives are voiced.

CA also gains a clearer insight intothe work of these dedicatedhealthcare professionals, which leadsto an increased awareness of nursingand medical developments inprofessional practice.

Face to face meetings buildconfidence and prevent an ‘us andthem’ culture developing. Knowledgeand understanding is advantageousfor all patient associations as it canbe used to address change whereand if appropriate.

Our close association with both IAand UA continues. A joint initiative inthe form of a poster outlining thework of each patient association wasdiscussed and agreed. An abstract ofthe content was put forward to theWCET UK committee for acceptance.

We are delighted to inform you that itwas accepted and appeared onPoster Board 11 - here is the result...

If you would like to learn more aboutthe topics discussed at WCET UK whynot visit:www.wcetuk.org.uk/2010/programme.html

The 2011 Conference will be held inLiverpool at ACC Liverpool3rd-5th October.

CA attends...The World Council of EnterostomalTherapists (WCET UK) Conference27th - 29th September 2010

From L-R: Anne DemickNational Secretary IA, MaryThomas CA Trustee andHazel Pixley NationalSecretary UA

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

PS. Don’t forget...World Ostomy Day - Saturday 6th October 2012If you have any fundraising ideas or suggestions on how CA can celebrate World Ostomy Day...contact the Editor via CA head office: 0118 939 1537 or Email: editor@colostomyassociation.org.uk - thank you!

If you are a stoma care nurse...Get in touch...and tell us your News!

Tidings was delighted to becontacted recently by Janice KingPersonal Assistant to the StomaCare Department at The PrincessAlexandra Hospital, Harlow.

Janice had been requested tocontact Tidings by Tracey Hart CNSto let everyone know about‘Connect’. So here is what ‘Connect’ is all about...

‘Connect’ Harlow & District StomaGroup is a new social network forostomates - who have either acolostomy, ileostomy or urostomy.The group was set-up by Tracey Hart,

Stoma Care Nurse at The PrincessAlexandra Hospital, Harlow, a yearago, and is organised by a pro-activeCommittee comprising Chairperson,Vice Chairperson, Secretary andTreasurer.

‘Connect’ currently has around sixtymembers and has been speciallycreated to enable stoma patients andtheir families to meet informally toshare experiences and offer eachother practical advice on living with astoma. For this purpose it has regular

coffee mornings and holds varioussocial events.

Anyone wishing to obtain furtherinformation on membership contact:

Lin Hart - Secretary to ConnectTel: 01279 505273. Or alternatively,Janice KingStoma Care P.A. at The Princess Alexandra HospitalTel: 01279 827072. Membership is open to all ages and both sexes.

Connect’s programme for 2011 is as follows... (further social events stillto be included):-

• AGM (11.00 am – 1.00pm) Thursday 20th January

• Coffee Mornings (10.30 am – 12.00 noon)Thursday 31st MarchThursday 2nd JuneThursday 1st SeptemberThursday 1st December

All the above will be held in the Main Hall of the Social Club at The Princess Alexandra Hospital.

C O N N E C T I O N S

If you have anything to sell, an event to advertise or a message to communicate, you can place a small-ad for as little as£20. So, why not get in touch...contact editor@colostomyassociation.org.uk and let Tidings promote your business.

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

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

(Please tick.) Yes I would like to make an single donation

I would like to make a donation of £

I enclose a cheque/postal order form made payable to the C.A. Ltd - Thank you!

Please tick here if you require a receipt acknowledging your kind donation

My Details:

Title: Name: Surname:

Address:

Postcode:

Telephone number: Email:

Donation & Standing Order FormThank you for your support

Please use this form to make either a Single donation or a Regular donation by Banker’s StandingOrder. Simply complete this 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.

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 inthe amount. I have also completed the Banker’s Standing Order form (Please tick.)

Thank you for your gift

Note:Please ensurethat we haveyour full name,address andpostal code thank you

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

Single donation: (a donation of £15 or more covers production of four issues of Tidings per year)2

1

Thanks to the gift aid scheme - we can reclaim money on your donation from the government. Forevery pound you give us, we can claim an extra 28p. For example, a donation of £15 becomes £19.23with 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 will make tothe Colostomy Association until further notice. I confirm that I pay an amount of income tax and/orcapital gains tax at least equal to the tax that the Colostomy Association reclaims on my donation in theappropriate year (currently 28p for every £1 donated).

Signature: Date: / / 2010

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: / / 2010

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

(Please tick.) Yes, I would like to make a Monthly donation of £ (Please tick.) Yes, I would like to make a Quarterly donation of £ (Please tick.) Yes, I would like to make a Yearly donation of £

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

Office Address: 2 London Court, East Street, Reading RG1 4QL Tel: 0118 939 1537 Helpline: 0800 328 4257E-mail: cass@colostomyassociation.org.uk Web: www.colostomyassociation.org.uk

Registered Office: 2 London Court, East Street, Reading RG1 4QL 5RW Registered Charity No: 1113471

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 a difference...to fellow colostomates

The Association provides:

• advisory literature, written by colostomates and healthcare professionals.

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

• a telephone helpline 0800 328 4257 manned 24 hoursa day every day.

• over seventy contact volunteers covering the UK, fullytrained and experienced, (who are themselvesostomates) these dedicated individuals bring a humantouch.

• a volunteer at the request of a stoma care nurse canvisit a patient/s before their colostomy surgery, andafterwards in hospital. Home visits can also bearranged.

• attendance at organised stoma care nurses 'open days',that you can visit and where you can learn more aboutyour stoma, in a friendly atmosphere and discuss anyproblems.

• attendance at manufacturers' and suppliers', ‘opendays’ and exhibitions. This allows us to update you onstoma care products, accessories and services via‘Tidings’.

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

The Colostomy Association is an independent charityfinanced solely by donations. Your help and support i sn o w more import a n t than ever in this changing world... Our findings show there are approx i m a tely 60,000 colostomates living in the UK and with over 6,400permanent colostomy operations being performed each year - we need to be here for them!

Your donation to the Colostomy Association today...will mean we can reach out to other colostomates their families and theircarers with support, reassurance and encouragement. With your help we really can and do make a difference - thank you

The Association continues, with YO UR help, to give support a n dr e a s s u r a n c e 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

• Regular DonationRegular donations can be made via standing order(see Donation Form) Regular donations help us toplan ahead and like all donations are vital to oursurvival.

• Single DonationSingle donation from individuals and fundraisingevents are always welcome and greatly appreciated.So please keep them coming, no matter how small.Just £15.00 (or more) ensures we are able tocontinue to produce four issues of Tidings per year.

• Donate via Payroll GivingEnables you to give direct to us straight from yourgross salary (before tax is deducted), and to receiveimmediate tax relief of up to £4 for every £10donated.

• Legacies - A gift in your willIf you are about to make a will, or are consideringmaking a change to your current will, please considerleaving a legacy to the Colostomy Association to helpus to continue to offer support to all those with acolostomy.

Don’t delay...Donate online today!There are NOW two ways to donate online:-

www.colostomyassociation.org.uk1 Visit the CA website and simply click

on the donate panel on the home page.

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

T I D I N G S | W I N T E R 2 0 1 1 | 5 3

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

For me the introduction to the OutlookGroup was a very important event. Myvolunteer visitor came to see me inhospital in 2005 a few days after mysurgery.

Julie Rust, our nurse on the Bowel CareTeam, had told me “You will meet Ernie,a fellow patient” so I was only slightlysurprised when this large, bearded,smart gentleman said “Hello Moira” as Iwas gingerly walking down the corridorfrom the day room. It was Ernie whointroduced me to the group and sincethen it has been a wonderful support tome and I have enjoyed every minute.

About 12 years ago the Bowel CareTeam at the University Hospital of NorthStaffordshire, along with somevolunteers, decided to set up theOutlook Group for ostomists in NorthStaffordshire and Cheshire. Julie Rustwas, and is, our local stoma nursespecialist, and along with Ernie Hulmeand Val Moss (now retired) they were

the main driving forces from its start. TheInaugural AGM & Patient Open Day wasat the Britannia Stadium home of StokeCity football club in 1999. Our firstchairman was a very passionate andremarkable ostomist Barry Brailsford,who led the group for many years.

Another person that played a major rolein the early days was Lee Findler whojoined the bowel care team shortly afterthe formation of the group and was andstill is, very supportive of the OutlookGroup even though he is no longer onthe Bowel Care Team.

Over the years the group havewelcomed all Ostomy patients, whetherthey have a Colostomy, Ileostomy orUrostomy. Consultant Mrs Chris Hall, isour President while Julie Rust attendsour meetings and committee meetings,keeping us up to date with any matterswhich we can help with within thehospital. Julie is also on hand during theevening group meetings in case anyonewants a private chat.

We have a meeting every quarter whenwe have a speaker and the opportunityto chat and have a good social time.Topics cover a wide area, including localinterest, travel and voluntary groups tovarious medical subjects by staff fromthe University Hospital of NorthStaffordshire. We hope to introducesome daytime events and will be goingout, either for a meal on February 23rd(enquire below for details) or on anouting. A very successful open day isheld annually which many stoma

manufacturers attend, giving us a chanceto see latest products and obtainsamples. This year we had over 150people attending.

Several of the members are trainedvolunteers and work under thesupervision of the University HospitalNorth Staffs Bowel care team, providingsupport and advice to newly diagnosedOstomy patients, their family and carerseither at home or during their hospitalstay and also with a friendly chat bytelephone.

A newsletter goes out to our membersin January outlining the events for thecoming year. We regularly contribute tothe Jacob’s Well charity by donatingsurplus stoma items for overseas use. Itis when one hears of the extremelydifficult situations that patients overseashave to cope with, that we realise howwell looked after we are in Great Britain.

On a personal note I really value thefriendships I have made. There is alwayssomeone I know I could have a chatwith if I needed to and it is strange tothink I would not have so many newgood friends but for my ‘makeover’!!

However, new laparoscopy surgerytechniques and shorter hospital staysnow mean we are not always able tovisit patients while they are in hospital.We would hope that this means we cancontact them not only later on in thegroup, but ideally at any time as needed.

Any patients in the North Staffordshireand Cheshire area are welcome to cometo our meetings so come along and joinus. Our first meeting in 2011 will be onWednesday March 16th at 7.30, whenAndrea Green (Foundation TrustDirector) from the University Hospital ofNorth Staffordshire will be our speaker.

If you need further information or wouldlike to be on our mailing list, pleasecontact me on (01782 627551) or ErnieHulme (01782 324441)

We look forward to seeing you soon.

Moira Hammond

“For me the introduction to the Outlook Group was a very important event. My volunteervisitor came to see me in hospital in 2005 a few days after my surgery”...

Moira Hammond writes... about the Outlook Support Groupbased in North Staffordshire and Cheshire

Members of the Outlook Support Group with Moira (second from the left front row), Julie Rust (centre) and Ernie Hulme CA Vice Chairman (far right)

From L to R: Ernie Hulme, Moira, Julie Rust

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

The following support groups have been revised thanks to your responses from the winter edition of Tidings.If you know of a support group not mentioned in our listings 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:Fittleworth Glasgow Stoma SupportGroupContact: Christine Daalman 0141 6330 592 or Charlie Sutherland 016 9 88 22075

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

Fife:Fife Ostomy Support GroupContact: Ishbel Barr 01592 772200

England - NorthCheshire:Cestrian Support Group Contact: David Burgham 01244310461Countess of Chester HospitalContact: Julie Clements 01244366170Drop 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 31266Maureen 01388 818267

Derbyshire:Stockport Support GroupContact: Angela Simpson0161 419 5059

Lancashire:Oldham Stoma SupportContact: June Wilde 0161 6787086Trafford Bowel CareContact: Jackie Carey (Secretary) 01617489659 Doreen 0161 9627818 John0161 7484655

Merseyside:I.C.U.P.SContact: Stoma Care Nurse 01516047399Liverpool Support Group CrosbyContact: Barbara Percy 0151 5292842(Afternoon)Olivia Thomas Suite UniversityHospital AintreeContact: 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 4878989 Ext 2221NHS Molineaux CentreContact: Lesley Brown 0191 2195656Royal Victoria Infirmary SupportGroupContact: Gordon Weatherburn 0191 2341109

Yorkshire:Airedale Stoma SupportContact: Jenny Shaw 01535 652516or Sue Hall 01535 210483Behind You (Calderdale& H u d d e r s f i e l dBowel Cancer Support Group)Contact: Michelle Speight 01484 355062CROPS (Colo-rectal ostomy & internalpouch support)Contact: Gloria 0114 2879503 Dewsbury & District OstomyContact: Janet/Eileen 0844 8118110Rotherham Ostomates Caring SupportContact: Contact CA for detailsScarborough Stoma Support GroupContact: Sister Jean Campbell 01723342388 Amanda Rowe 01723 342446The Hull and East Riding ColostomySupport GroupContact: Pete Smith 07989 565335and Claire Price 07805 978151

Isle of Man:OptimisticsContact: Stoma Nurse Lynne WebbSCN 01983 534009 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 7868

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

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

Nottingham Stoma SupportContact: Mrs B Heath 0115 966 3996North Notts Stoma Support Group(Sutton-in-Ashfield) Contact: Tore and Nicky Norman01773 715460

Staffordshire:OutlookContact: Ernie Hulme 01782 324441Joan 01782 710828

Worcestershire:Kidderminster & District CollossusSupport GroupContact: Brendon Drew 01299400843

West Midlands:Colostomy GroupContact: Diana Wick 0121 4242730Newhall Stoma Support GroupContact: Sarah French 07773 396236

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

Cambridgeshire:OstomisticsContact: Heather Connor 01733768332 Mob: 07757167422

Essex:ConnectContact: Lin Hart 01279505273M.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 Angela01702 385509South Essex Young Ostomy GroupContact: Paul Gray 01708 501268STEPSContact: Jackie Coleman 01268 451937Redbridge Ostomists ClubContact: Stoma Nurses: Chris/Lisa0208 9708321

Hertfordshire:ConnectContact: Lin Hart 01279505273ColoniseContact: Gill 01727 851556ConnectContact: Lin Hart 01279505273Stoma FellowshipContact: Andrea/Mandy 01438781133

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

Norfolk:Ostomy Friendship Support GroupContact: Contact CA

StarsContact: 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 426652West Berkshire Ostomy Club (WBOC)(Reading)Contact: Jackie Dudley 01344 426652

Hampshire:Southampton Support GroupContact: Carole Summer 0238 04 4 6779Wessex Urology Support GroupContact: David Morris 02392 3610 4 8

Kent:Ashford Stoma SupportContact: Chairwoman - Mrs UrsulaNaish 01233 640863Atoms Support GroupContact: Maria Culleton SCN01227 769679 or 07827997424Canterbury & Coastal Stoma SupportContact: Marie Culleton SCN01227 769679 or 07827997424Dover & District Stoma SupportContact: Marie Culleton SCN01227 769679Maidstone Stoma Support GroupContact: Judy/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 07984979728or Mary 07773397234Whipps Cross University HospitalContact: Christina 0208 5356563

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

Oxfordshire:Oxfordshire Ostomy FellowshipContact: Pat Longw o rth 01235 52416 3

Surrey:Epsom and District Stoma SupportContact: Jan/Sheena 01372 735232

Sussex:(SAS) Brighton & District Stoma CaresupportContact: Sylvia Bottomley 01273554407The Ostomy Friends GroupContact: Jane Quigley 01323 417400Ext 4552

West Sussex Princess Royal StomaSupportContact: Tina Walker 01444 441881Ext 8313

England - South WestAvon:Bristol Ostomy Self Support (BOSS)Contact: Christina 0117 9075326Joyce 0117 9558236 Rob 01179668021

Cornwall:Lanhydrock Ostomists GroupContact: Christine Davey 01208 831471OptimistsContact: Sue Hatton 01326 340058

Devon:Devon IAContact: Margaret Bond 01392447374CAT - TorbayContact: Donna Ashbrook01626 854862

Dorset:Cupid (Colostomy Urostomy pouchIleostomy of Dorset) ChristchurchContact: CA for detailsCupid (Colostomy Urostomy pouchIleostomy of Dorset) PooleContact: CA for details

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: SCD 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