Cover storyPathways to a colostomy

Sarah’s journey

Feature

Exercisefocus on swimming

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

welcome to SPRINGDid you know...

The Colostomy Association haveproduced two NEW booklets...

Parastomal Hernias andColonoscopy through the Stoma A Patient’s Perspective

Both booklets will be available shortly...contact CA on 0118 939 1537 to order yours today.

Welcome to the spring issue of Tidings...

Sitting here on the first of the lightevenings I find myself writing to youand listening to a radio programmeabout the Universe. The presenter istalking about journeys to known andunknown planets. You are probablythinking what has this got to do withme...well...

Recently I have been privileged toattend several events, one inBirmingham with over 200 hundredstoma care nursing professionals andtwo others in Chester and Huntingdonwith our hugely dedicated CAvolunteers. The programme struck achord with me especially the words‘known and unknown.’

Each and everyone of the people Imet at these events came together viadiffering pathways the ultimate focusbeing ‘providing care’ and ‘receivingcare to go forward and embrace lifeonce more.’ The ‘known’ may be seento represent the knowledge andexpertise of the stoma care nursewhereas the ‘unknown’ may be likened to the patient at the outset oftheir journey to new beginnings.

There is no doubt that those involvedin the relationship of ‘providing care,’specifically stoma care, are dedicatedto their patients and vehementlyprotective of the clinical specialistservices they provide. It is clear toofrom the many conversations I havehad with patients that they are boththankful and appreciative of theexcellent care received.

Both professional and patient areinseparable, both journey togetherdisplaying courage, tenacity,resourcefulness, enthusiasm andenergy...the ‘known and the‘unknown.’

This issue of Tidings offers severalreaders’ stories - real life experienceswith real life outcomes. There is also a specific article in our problematicstomas series about convexity fromstoma care nurse Melanie JeromeRGN/CNS of the Chelsea andWestminster Hospital NHS FoundationTrust. We have the last in our series onDiet - it would be interesting to knowhow many of you enjoyed this seriesperhaps you would like to write inand tell us. The centre pages focus onexercise and keeping fit with hints andtips from CA volunteer - BronwenLowy and a delightful story from SueHatton - Executive Trustee about herswimming exploits past and present!

If you would like to comment on anyof the articles featured or would liketo write in with your story or the ideafor an article - the Editorial team andmyself would be delighted to hearfrom you!

Tidings can only go forward andimprove with your input so if you havebeen contemplating writing there isno time like the present!

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

EditorTidings Magazine

PS. See Page 6...How to get in touchwith the Colostomy Associationand Tidings.

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

Stop Press • Stop Press • Stop Press

New Bowel Cancer Test MaySave Thousands...

Care Services Minister, Paul Burstow said:

"I am delighted that the UK NationalScreening Committee has given the go ahead to this new screeningprogramme which will help save anadditional 3,000 lives every year.

"Bowel cancer is one of the biggestkillers in England. That is why we areinvesting £60 million over the nextfour years to fund flexiblesigmoidoscopy and why we recentlylaunched a campaign to make peoplemore aware of the early signs ofcancer.

April is Bowel Cancer AwarenessMonth make as much noise aboutbowel cancer as possible to helpsave lives from the disease.

4 | T I D I N G S | S P R I N G 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 News

Focus on admin at headoffice and a new website

Fundraising

Your donations... stories and the 500 Club

Notebook

Updates and events

Connections

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

6

9

10

53

55

inside..........

storycover

Pathway to a colostomySarah’s storyfeatured on page 12

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

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

ProductShowcaseOstomy Survey leadsto innovationand developmentof a new stoma care product

16

...this issuereal lives...

Pathways to a ColostomySarah Squire takesus on her journey

Ken’s Story...If you make plans don’ttell people about them

Reverse Gear...Susan Fifer writesthe last of her three articles

Young OstomatesBreakaway...a family affairand more

Fifty years with a stoma...by John Belleguelle

12

& special features

health...Irrigation and YouSue Hatton repliesto your responsesfrom the autumn issue

DietA balanced view...Regaining lost weight

ExerciseHow about it!

Problematic stomasConvexity

Dear NurseYour letters and queries

22

travel...

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

support...Support groupsIn conversationMichael Slater writesabout the Wessex StomaSupport Group

Support grouplistings

49

interest...Reaching outUpdate on SCARand appeal from Hospices of Hope

ChatbackReaders’ writes

36

34

18

26

32

24

38

5040

27

44

47

6 | T I D I N G S | S P R I N G 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

Colostomate & Helpline VolunteerGeorgina Williams

Colostomate & Volunteer Bob Buckley

Stoma Care Nurse AdvisorAmanda Gunning RGN, CNS

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

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

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

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

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

• Images should be in RGB mode

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

• File sizes not less than 10Mbytesuncompressed

• Images in Tiff with LZWcompression or JPEG format.

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

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

Publication:Spring April 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 website and register at:www.colostomyassociation.org.uk

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

How to contact the Editor By letter write to:

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

By telephone via CA Office:0118 939 1537

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

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

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

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

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

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

1

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

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

2

To sample the better degree of comfort offered by Softima® Closed or Convex Closed simply fill in the form below

and return using the FREEPOST address.

Please send me a sample of:

Convex Flat

Beige Transparent

Stoma size ___________XX-STA- -10

Name: __________________________________

Address: __________________________________

___________________ Postcode:_______

Telephone: __________________________________

Email: __________________________________B. Braun Medical Ltd | FREEPOST SF10771 | Sheffield | S35 2FZ

Experience Quality. The new Softima® Closed and Convex range from B. Braun.

Experience Choice. Either the gentle convexity flange for retracted stomas or the security of flat flange for extra comfort.

Experience Freedom. The Softima® range is so soft and discrete that you will forget you are wearing a pouch.

Why not experience Softima® today? Either call 0800 163 007 or fill in the coupon below and return using Freepost.

Softima® Closed and Softima® Convex

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

Tel. 0800 163 007 | Fax (0114) 225 9111 | www.bbraun.co.ukXX-STA- 10

To receive a FREE sample of our new ostomy

pouch incorporating QuietWear call customer

services on 0800 521 377 or fill in the form below.

Name:

Address:

Postcode:

Telephone:

Email:

Stoma size:

To receive FREE samples of our new QuietWear Pouch, simply fill in the

form below and return to: Customer Services, FREEPOST, Hollister Ltd,

42 Broad Street, Wokingham, Berkshire RG40 1GZ.

CASpring2011

eceive a o rTTo

pouch incorporating QuietW

eceive a FREE sample of our new ostomy

ear call customerpouch incorporating QuietW

sample of our new ostomy

ear call customer

pouch incorporating QuietW

services on

Name:

eceive o rTTo FREEform below and r

eet, Woad Str42 Br

ear call customerpouch incorporating QuietW

services on 0800 521 377 or fill in the form below

FREE ear Pouch, simply fill in the samples of our new QuietW

n to: Customer Services, FREEPOSTeturform below and r

e RG40 1GZ.okingham, Berkshireet, W

ear call customer

or fill in the form below

elephone:TTe

ear Pouch, simply fill in the

, Hollister Ltd,n to: Customer Services, FREEPOST

e RG40 1GZ.

.or fill in the form below

Address:

CASpring2011

Postcode:

Postcode:

Email:

Stoma size:

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

C A N E W S

•The CA office plays a pivotal role...efficient administration and opencommunication are key to the work ofthe charity. Close contact betweenthose in the office and those on theground e.g. volunteers is essential tothe CA’s performance and ongoingexistence.

Heading up the office team is RichardBray – Office Manager (joining CA2009). Integral to the office team aretwo amazing ladies who carry outtheir duties with passion andcommitment. Both have long standinginvolvement with the charity(previously with the BCA and recentlywith CA). You may know them bytheir first names Gill and Jo. They arethe CA office administrators - GillHerbert (joined BCA/CA 2005) and JoMckenzie (joined BCA/CA 2004).

So, just what does the team tackle?Well, here’s a snapshot...

Helpline...A rota of trained CAvolunteers - ‘Helpliners’ is worked outquarterly to ensure continued‘Helpline’ coverage out of CA officehours. The ‘Helpline’ is transferredback to the office each day from the‘Helpliner’ and returned to another onthe rota after office hours. The subjectnature of calls is logged to enable theAssociation to provide relevant and upto date support materials.

Helpline telephone enquiries...to the‘Helpline’ during office hours of aspecific nature are referred to anexperienced trained volunteer or toCA volunteer stoma care nurseAmanda Gunning CNS. A sample call– a lady calling from Dorset phoned tosay her local hospital in Dorset couldnot perform her stoma operation (asshe had liver problems). She hadbeen referred to a specialist hospitalin Birmingham – her concern wastravelling back to Dorset after heroperation. A worrying time, butreassurance was given and the callended with the lady feeling morepositive.

Email enquiries...are dealt with byreturn or if a query needs furtherinvestigation the answer is sought andfollowed up the later in the day ornext day.

Open days...Company and stoma caredepartment ‘patient open days’ are alarge part of the office workload. CAvolunteers are always in demand! Veryoften a company or stoma care nursewill request a local CA volunteer toattend their event. The office worksout which volunteer is available. Avolunteer is contacted and itemsnecessary are forwarded by carrier tothem prior to the date of the OpenDay. This ensures patients attendinghave the latest CA patient informationas well as the volunteer’s allimportant ‘listening ear’. The CAhandles many ‘patient open day’

mailings – for companies and stomacare nurses. Postcodes are supplied,labels are run and boxes of stampedenvelopes are stuffed carefully withinvites and placed with Royal Mail tobe sent across the UK.

Other administrative areas include:-

• Handling calls - (upwards of 25 aday – typical call length 20-40 mins)

• Handling and returning emails

• Website - registrations/queries

• Managing revenue - donations,legacies, other

• 500 Club

• Radar keys

• Liaison with organisations

• Meeting stoma care companyrepresentatives - to ensure CAkeeps up to date with products andservices.

• Stock take/ordering and creatingnew patient literature

• Stock take/ordering general officesupplies

• Premises and services• Tidings editorial• Managing incoming post - large

amounts when Tidings is published• Responding to requests - sending

out literature, searching and sourcingbest information from Tidings issues,the internet of company literatureetc.

Focus on adminat CA office...

Thinking was based around theostomate as well as partners, familyand carers and the type of informationneeded by all.

The project began summer 2010 withdiscussions at Trustee and office level.The thinking was to give those visitingthe site the whole picture as CATrustee Jackie Dudley said ‘to givesomeone visiting the site anunderstanding of what it’s like to walk

in the shoes of an ostomate’ plus anindication of what life is like ‘livingwith a stoma’ on a daily basis.

Monty Taylor - CA Chairman sourced acompany who specialised in charitywebsites…and work began in earnestin October 2010.

A template was set up to allowcontent to be inserted and managedat the office. Gill Herbert was taskedwith collating information fromostomates, CA volunteers, healthcareprofessionals and previous articleswritten for Tidings.

Ostomates and volunteers were askedto submit their stories for a specialfeature called, ‘My story’ (found onthe home page and elsewhere on thesite) the idea being to give visitors theopportunity to read ‘real life’experiences which would be ofbenefit to fellow ostomates and thosearound them. Talking about thewebsite recently Gill said, ‘I wouldreally like more people to write their

stories so that we can rotate themand keep the content fresh’.

Strangely just when Gill fell sick lastsummer, Sarah Wall stepped acrossthe CA threshold as a part-timevolunteer with experience in backoffice website technology and as Gillput it ‘saved the day’. Both Gill andSarah worked hard to get the sitecontent and usability right. Severalvolunteers helped proof read thecontent prior to the site going live inFebruary this year. Well done to allconcerned!

Gill’s comment: The Associationencourages people to register on thewebsite so that they initially obtain aCA information pack and receiveTidings on a regular basis. Invites tostoma open days events are also sentout keeping everyone in touch and upto date with what’s on. We are also inthe process of setting up an electronicnewsletter which will go out regularlyto all those who sign up for it via thewebsite.

One recent addition to the workload was revisiting the look and feel of the CA website...

The new CA website is now live

1 0 | T I D I N G S | S P R I N G 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...

Donations

When sending your

donation/s please mark

your letter/cheque with

Tidings Issue 21....

Thank you!

500 Club - Dec DrawMrs S H Salt £1000.00

Mrs R Penketh £338.00

Mrs K Judge £169.00

Mr R Lilley £ 84.50

Mr F W Newton £ 84.50

Mrs M Young £ 84.50

Mr D S Saunders £ 42.25

Mrs S Hatton £ 42.25

Anonymous £ 42.25

Anonymous £ 21.12

Anonymous £ 21.12

Mrs E Hancock £ 21.12

In Memory...Mr D Garnham £ 210.00Mr F Green £ 80.00Mrs R Woodcock £ 195.00Mrs E Blackadder £ 100.00Mrs P Taylor £ 95.00

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.charityflowers.co.uk or simply telephone 0870 5300600

We continue to recycle old

mobile phones.

For a freepost envelope contact:www.recyclingappeal.comor Tel: 08451 30 20 10 quoting theColostomy Association as your charity.

Kind thanks toeveryone who wrote in with donations...

Dear CA,I would like to thank everyone fromthe CA who are there for usColostomates. Thank you for Tidingsmagazine for its reassuring comments.I would also like to thank thecompany Trent Direct who deliver myappliances, whose staff are very politeand very helpful and the next daydelivery service is tremendous. My sonTim and granddaughter Holly did arun called Santa dash in Liverpool atthe end of last year and raised £100.Family members and myself wouldalso like to donate £50 making a totalof £150 which I hope will helptowards the continuation of this greatcharity.

Yours sincerely,Mrs M Bowker

Don’t forget our

Recycling

project...

CA Volunteer Lisa raises the bar...Lisa, a volunteer with the CA works forDesignBridge. When the IT director,Jeff Hughes was replacing theirequipment he let the old equipmentgo to the highest bidders. Lisasuggested us for the funds raised andwe recently received a cheque for£556. Lisa also ran the New ForestHalf Marathon in March of this yearand is hoping to raise £500.

Dear Editor,This is a donation from my Associationwhich is in a village in Cyprus (underTurkish occupation since 1974) everyyear we have a dinner/dance to helpthe refugees’ children for theirUniversities. When Imentioned myproblem they decidedto donate £200towards ColostomyAssociation.Best of Luck,Michael Chambi

Dear SirsI have pleasure in enclosing a chequefor £165 for the benefit of your charity.This money was raised by theentrance fees for the Memorial Trophycontested by the senior members ofthe club and the ColostomyAssociation was nominated by thewinner Mr Maurice Pulley.Yours sincerelyB BaileySeniors Treasurer, Gaudet Luce Golf Club

Thank youeveryone

for your kinddonations

Dear Tidings,Last year was a hectic one for me...I had a new granddaughter! I was toldI needed more bowel removed andanother re-fashioning of my stoma,(the 3rd attempt) moved home andcelebrated my 50th birthday!

Since I am permanently wheelchairbound due to failed spinal surgery thehighs and lows have taken their toll.However, my daughter arranged aparty for me to raise my spirits andcelebrate my 50th birthday with asmall group of friends and family.

Knowing how the recession has hitboth individuals and organisations Iasked friends not to buy presents butto make small donations to yourwonderful organisation. I am pleasedto say we raised £101.20 which I hopewill help towards your continued goodworks supporting fellow colostomates,their friends and families and carers. Ihave to say how much I enjoy yourquarterly magazine with itsinformative articles which bring bothcomfort and support. I am pleased tohelp contribute, albeit in a small way,through my monthly donations andthis gift from my wonderful friends.

Yours sincerely,Carol Edwards

T I D I N G S | S P R I N G 2 0 1 1 | 1 1

Dear Colostomy Association

I am delighted and extremely surprisedto receive your letter this morning andits enclosure of the cheque for £1000.

I decided to join the 500 Club becauseit seemed a very good way of raisingmoney for the Association but it neveroccurred to me that I might win a prize– let alone the top one!

Incidentally, a few days ago I completedand posted the direct debit mandate formy £12.00 annual donation andadditionally the direct debit mandate£12.00 for the 500 Club. It was delayedfor some considerable time due to mywife needing 24 hour care at home,items which appeared not to be urgentwere put on one side and then, alas,forgotten temporarily.

However, your cheque has come at avery helpful time; sadly my wife diedtwo months ago and it is verycomforting to receive some good news.She suffered from Parkinson’s diseasefor about 25 years and life has beenvery difficult for both of us for manyyears.

My own stoma problems have alwayshad to remain in the background but Ishould like to add that TidingsMagazine has been of tremendous helpto me - explaining causes of problems,especially technical ones, and, whenappropriate, offering solutions. I alwayslook forward to reading the articles andhave often wished to write a letterthanking you for its publication butnever seemed to have the time. Inaddition to the traditional help andguidance which patients normallyexpect to receive from their stomanurses; the CA ‘Tidings’ publicationmakes a most valuable contribution tounderstanding and resolving manyproblems which are caused by having astoma.

I decided to put the prize moneytowards the cost of a family celebrationfor the ‘Life of my Wife’ which was avery special occasion. Our threechildren and seven grandchildrenplayed a major part in speaking,composing and playing music for thecelebration. We hired a very large ‘hall’in a local hotel and were able toprovide excellent food as well asentertainment for about one hundredrelatives and friends. It is a memorythat we will all treasure for many, manyyears to come.

Kind regards to you all,Stuart

Join the 500 Clubtoday to become our next BIGwinner...

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

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

To the Manager: (Bank or Building Society)

Bank Address: Postcode:

Name(s) of Account holder(s):

Account number: Sort code:

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

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

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

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

Name: (IN CAPITALS)

Signature: Date: / / 2011

#My Details:

Title: Name: Surname:

Address:

Postcode:

Telephone number: Email:

Notice to ALL

500 Clubmembers...

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

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

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

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

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

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

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

1 2 | T I D I N G S | S P R I N G 2 0 1 1

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

Sarah Squire...Research Assistant

wife and busy Mum of two,

first contacted theColostomy Association

in 2008. Talking to Bob Buckley

CA volunteer andothers via the

CA Facebook siteSarah was encouraged

to tell her story...

I had my colostomy surgery in 2007when I was 34 years old, due to arecto-vaginal fistula. A fistula isdefined as an abnormal connection orpassageway between two organs orvessels that normally do not connect.In my case, a hole between anus andvagina, so it is more accurately ano-vaginal. These fistulas can be causedby trauma during childbirth,symptoms of Crohn’s disease orUlcerative colitis, or sometimes fromcomplications during surgery. Mycause is a bit of a mystery. I have twochildren, Oliver thirteen and Madisonseven. Maddie was over 10lbs whenshe was born, and arrived ratherswiftly, but nothing was apparent atthe time after her birth.

In 2005 I had my ovaries removed asa precaution after losing my mum tocancer when she was just forty-five. Iam told the surgery is unlikely to bethe cause of my fistula but it wasabout six months after this I started toget symptoms. I assumed the HRT Iwas now taking was not quite rightand I was getting breakthroughbleeding. I did what many of us dowith ‘downstairs business’, I ignored it.After a few months I got braveenough to go my GP and was referredto a gynaecologist. By now I wasmortified to admit that I thought poomight be coming through the front.The doctor reassured me I wasn’t afreak, or unique and diagnosed afistula and referred me to colorectalsurgeon Ian Lindsey.

Mr Lindsey told me he would put aseton in for a couple of months and

then repair the fistula. The drainingseton is a loop of plastic whichthreads through the fistula and keepsthe tract open, to reduce the risk ofinfection and allow healthy tissuegrowth in preparation for the repair. Iwas told the advancement flap repairhad about a 70% chance of working.Not bad odds then, I thought. Theidea of the procedure is to excise aflap of healthy tissue next to thefistula, pull it over the hole, suture and‘job’s a good un’. Or so it should be.Two days post op, my symptoms werehorrendous. This will definitely godown as the low point in my wholejourney. Each time I went to the loo Ileaked poo vaginally for hours. I find ithard to explain just how awful I felt.It’s not the sort of thing you tellpeople. It’s dirty. It’s embarrassing. It’swrong. After two visits to my surgeonthe option of a temporary stoma wassuggested. In one way the thought ofa bag was a relief. But will peopleknow? Will I be able to go to work?Will it be noisy? Will it smell?

It was arranged that I would see astoma nurse before the op, which Iwas to have two weeks after the failedrepair. My stoma nurse Simon Turleyin Oxford was fantastic. I wasconvinced I wouldn’t get used to itbut he explained everything and Irealised this was the best option forme. We were due to go to Cornwallon holiday that week and after muchdiscussion and tears we decided myhusband Steve would take the kids onholiday and I would go for the fullboard offered at the John RadcliffeHospital! I couldn’t go on holiday like

Pathways to a colostomyA Recto-Vaginal Fistula...can be caused by trauma duringchildbirth, symptoms of Crohn’s disease or Ulcerativecolitis, or sometimes from complications during surgery

Readers’PANEL

contributor

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

this and didn’t want the kids to missout. It was very, very hard wavingthem off, but I knew they would behaving fun instead of hospital visiting.

The evening they left I spent hours onthe Internet finding out everything Icould about colostomies. By chance Icame across the Ostomyland forum. Ihad never been on a forum beforeand must admit I thought they were

for nerds. But I read and read andread. I dubiously posted a ‘hello’message and was inundated withreplies. One lady even had the sameproblem as me and was fixed,awaiting reversal. The relief to findsomeone I could relate to wasenormous. I really wasn’t a freak orunique! And you know, they didn’teven sound or look like nerds! Theywere just normal people, with one

thing in common. They have, had, orare close to someone with a stoma.By the time I went into hospital acouple of days later I felt I had a verygood understanding of life with astoma. I actually began to lookforward to it.

As it was, I had to wait a few days toget the surgery as emergencies ofcourse took priority. My dad and hispartner became chief visitors, treatingme to ice cream each night I gotbumped off the list! After the surgery Ihad terrible trouble with nerve pain,but the stoma worked well. Simonwas great. That man has a lot ofpatience! I had a few issues with bagssticking as my stoma is flat and itseemed nothing was going to keep agood seal. But, eventually we sorted itwith the help of a barrier ring.

So the family came back fromCornwall and it was time to explain tothe kids just why Mum had been sopoorly. They seemed to easily acceptthat I wasn’t going on holiday withthem. Too easily now I think back! ButI really think kids are great acceptingthings at face value. So I decided tobe upfront about my stoma. They tookit in, had a look, and got on with life!Maddie always asked – and still does– if she was hurting my ‘poorlytummy bit’ when climbing on me, butit didn’t seem an issue that I now‘pooed’ out of my tummy. Kids reallyare great. Steve was, and is, amazing. Icouldn’t ask for a more understandinghusband. My whole extended familybent over backwards to help and havebeen supportive all along.

Physically I was doing well. My fistulasymptoms were finally gone and thestoma was OK. Now I had to thinkabout going back to work. I work fulltime as a Research Scientist as part ofa team developing therapies to treatDuchenne Muscular Dystrophy. At firstI didn’t want anyone to know, butinevitably with me being off, peopleasked where I was. I think thescientific environment helped me be

Sarah pictured with husband Steve and childrenOliver and Madison...enjoying the sunshine together

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

open. People understood theprocedure and were interested in myproblem and possible repairs. I linedup one workmate to take the blame ifmy stoma was noisy during labmeetings (which by the way, hasnever happened) and they were allgreat. It has been known for a bunchof us to crowd round a computerlooking up the latest treatmentoptions, including graphic videos! Iwent back to work eight weeks afterthe stoma surgery, and it would havebeen sooner if a skin ulcer hadn’tknocked me back a couple of weeks. Idid worry about smell, and even hadSteve with his nose next to my stomathe night before I went back to workas I was convinced I could smell it!The things you do for love.

I start work early in the morning andwasn’t overly happy about going offwith my bag filling. I wasn’t havingany problems as such with the bag,but it was on my mind all the time. Ihad been spending more and moretime on Ostomyland and had readabout irrigation. It seemed very fiddlyto me and a bit of a ‘faff’ but with theencouragement of my new cyberfriends I made an appointment withSimon to have some lessons. It didseem fiddly and I did regret thechicken korma the night before whileenclosed in a small space with poorSimon, but the feeling of an emptybag for hours was nice. So I decidedto give it a go at home. It was a bittricky for the first week but then I gotinto a routine, and it really gave memy confidence back. I felt I had finallybegun to accept the stoma. Ideveloped a hernia about six monthsafter the stoma surgery, which for themoment is not too much of aproblem. By wearing jeans it stayscomfy most of the time but I do find itplays up if I am on my feet too muchor wear looser fitting clothes.

Unfortunately I am now three yearson and have had six failed repairs on

the fistula. Most of the time, I manageto stay positive about the situation,but I do get down, particularly as Iseem to keep slipping through thesystem, and have to chaseappointments. My surgeon was great,even when I kept turning up like abad penny to tell him his latesthandiwork had come adrift. I knowthey are tricky to mend, and that Ihave been unlucky. I have now beenreferred to a new consultant BruceGeorge, who has experience of usingthe leg gracilis muscle forreconstruction and I hope to have thissurgery in early 2011. I’m not quiteready to give up on the fistula repairsyet and like to think I may have thechance to be reversed in the future.But as one of my good friends onOstomyland said, ‘A well irrigatedstoma is often more convenient thana bum hole’. Life for me and mystoma is good. I work, I am a schoolgovernor, I travel abroad and evenhope to one day repeat the Cornwallholiday I missed out on!

I have continued to visit Ostomylandon a regular basis and was thrilled tobe asked by webmaster Jason to jointhe ‘team’ as a moderator. I feel I havecome full circle, from being new andneeding much help to being in aposition where I like to think I canhelp out new and potential ostomatesovercome their fears and problems. Iwas also very proud to represent themat a Colostomy Association open dayalong with another member of thecrew Kathy. Ostomyland offers anonline support community in the formof a lifestyle guide, message boardand live chat. I truly believe it wasthrough the support of members thatI managed to cope so well with mystoma, and I have made friends forlife. I now have a very good friendthrough Ostomyland who has theidentical problem and the samesurgeon. We like to compare notes onhim over a coffee! It is also great tosee the CA have a Facebook page

now. The Internet has become such abig part of many people’s lives and itis good to be able to find support andadvice online. Not so long ago it waseasy to feel very alone with acolostomy and hopefully nowostomates do not need to look far tofind someone they can relate to.

About...Recto-VaginalFistulaObstetric trauma is the mostcommon cause for the developmentof these fistulas. Other causesinclude trauma, radiation damage,and inflammatory bowel disease,especially Crohn’s disease.

A recto-vaginal fistula is an abnormalopening between the rectum andvagina which allows small amountsof waste, normally contained in therectum, to pass into the vaginaleading to possible infections.

The patient complains of passingflatus (wind) and faeces from thevagina. Vaginitis and recurrenturinary tract infections may alsooccur. Diagnosis is made viaexamination under anaesthetic atwhich time multiple biopsies aretaken.

It is possible for some surgeons toattempt to repair the fistula,although it is generally consideredbetter to leave them alone as theycan be made worse.

However, surgical techniques haveimproved and if problems persistgiving a poor quality of life, surgerymay be considered.

Direct repair of the defect oradvancement of a mucosal-submucosal flap of the vagina tocover the defect is often successful.Occasionally a bowel resection with or without a temporarydefunctioning stoma is required.

References:www.crohns.org.ukNursing Practice: Hospital and HomeMargaret F. Alexander CBE BSc PhD RN RM RNTFRCN (Editor), Josephine (Tonks) N. FawcettBSc(Hons) MSc RN RNT ILTM (Editor), Phyllis J.Runciman BSc MSc MPhil RN RM RHV RNT (Editor)

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

Manufactured by Welland® a CliniMed® Group company. Welland products are distributed in the UK by CliniMed Ltd. Tel: 01628 850100 Fax: 01628 523579 Email: enquiries@clinimed.co.uk or visit www.clinimed.co.uk. Fannins N.Ireland: 028 907 35581. Fannins Eire: 0035 312 907047. CliniMed Ltd, a company registered in England number 01646927. Registered offi ce: Cavell House, Knaves Beech Way, Loudwater, High Wycombe, Bucks HP10 9QY. CliniMed®, FreeStyle Vie® and Dual-Carb® are trademarks of CliniMed Holdings Ltd. ©2009 CliniMed Ltd. 1048/0209

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

Postcode:

Tel. No.: E-mail:

FreeStyle Vie® Flushable is a new fl ushable pouch that’s designed to make pouch wear and disposal simpler and more comfortable. As well as a soft outer layer and improved Dual-Carb® fi lter, FreeStyle Vie® Flushable has an Easy-Peel™, biodegradable inner liner that can be disposed of down the toilet. Imagine how convenient that could be!

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

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

Update on stoma careproducts and services

OstoMART are proud toannounce the launch of OstoFixEighty Mini Security Frames.Based on the highly successfulOstoFix Forty, the new mini frameoffers all the security andconfidence patients have becomeused to, but in a mini version.This is ideal when smaller areasrequire extra adhesion, or forfixation of small appliances likefistula pouches, or stoma caps.Just like the larger version,OstoFix Eighty is coloured indiscreet beige with a non slipmatt finish, and unlike shapedhydrocolloids, it does notdisintegrate with wear.

OstoFix Eighty Security FramesProduct Code: DFW80Box of 80 frames

Available on prescription fromyour usual supplier, or directfrom OstoMART on 0800220300. Please call for asample, or use the tear off stripin the advert in this Tidingsedition.

Beyond the standard...CliniMed Limited and SecuriCare(Medical) Limited - scoop thedouble and it’s silver all the way

CliniMed Limited and SecuriCare(Medical) Limited have been awardedInvestors in People (IIP) Silver status.This national award recognises bestpractice in business planning,management and training.

The findings of both reviews werenoted as being “very consistent, verypositive, with a great deal of goodpractice evident throughout theorganisation.” The policies in placewere noted as “comprehensive andreflecting a desire to adhere to bestpractice and focus on outstandingcustomer service.”

In the assessor’s view the moststriking feature of CliniMed andSecuriCare was the “culture ofcustomer service, respect, integrityand ethics” and the “notable sense ofloyalty and commitment of people inall parts of the business.

Investors in People recognisedcompanies are in the top 23% ofemployers, by being silver accredited.

To learn out more about...CliniMed Ltd and SecuriCare(Medical) Ltd why not visit...www.clinimed.co.ukwww.securicaremedical.co.uk

AAH Pharmaceuticalsare pleased to announce alaunch of a brand new range ofostomy accessories...

Lifteez and Derma-S ranges arespecifically formulated to providehealthcare grade certified ingredientswhich can be safely used withoutcausing trauma to the skin.

Both Lifteez Medical Grade AdhesiveRemover and Derma-S Medical GradeBarrier Film products are “Sting Free”when applied to the skin surroundingthe stoma avoiding any discomfortthat may be caused with comparativealcohol based products.

These products offer a high qualitysolution for both patients andhealthcare professionals within thecommunity and provide excellentvalue to the NHS.

For further information or samples please call ourcustomer care team on 0800 626 524 or E-mail us atmediownlabel@aah.co.uk

Wilkinson Healthcare, Delivering Better Care!

As one of the UK’s leading independent Dispensing Appliance Contractors we can offer you:

• The ability to choose from a wide range of appliances from many different manufacturers

• No product bias or pressure to choose one brand over another

• Free appliance customisation using state-of-the-art cutting technology, to ensure the perfect fi t for you

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• Free and caring support delivered through specialist Nursing and Care Centre teams

Call our Freephone Care Centre to fi nd out more: 0800 626 524

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OakMed...Announce a newaddition to the mini rangegiving more choice...

The mini pouch with no starterhole is now available.

Features include:-

• No starter hole - perfect forpaediatrics and awkward to fitfistulas and drain sites.

• Integrated charcoal filter to helpprevent ballooning and pancaking.

• Very thin hydrocolloid wafermoulds to the body to provide asafe secure fit.

• Hypoallergenic material forsensitive skin.

NEW Comfizz Support VestsNow Available OnPrescription...

If you have multiple stomas or high sited stomas then theSupport Vest is the ideal garment.

Our level 1 light support vestsprovide soft gentle support,incorporated into a practicalmodern vest. Ideal for supportingany stoma site but especiallyhelpful for multiple stomas,hernias or high sited stomaswhich ordinarily are difficult tosupport with underwear.

The gent’s style is sporty, whilstthe lady’s vest is feminine withadjustable straps. Comfortableenough to be worn all day, everyday, whilst offering all of thefollowing benefits.

• Comfortable supportincorporated into a practicalmodern vest

• Forget about your stoma, regainself confidence

• Keeps skin cool & dry throughbreathable fabric

• Hernia symptom relief

• Can improve stoma bagadherence reducing leaks

• Smoother body shape

• Reduces dragging feeling

For more information:Speak to one of the Comfizzteam on Tel: 01757 229 531

or visit:www.stomawear.uk.com

Lady’s Vest Gent’s Vest

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R E A L L I V E S K E N ’ S S T O R Y

“If you makeplans don’ttell peopleaboutthem...”

Was it one of those early Greekphilosophers whofirst said this?

As my plans involved early retirement,the sale of the family home and amove from Wales to Devon, it wasonly courteous that line managers,work colleagues, friends andneighbours were informed.

The first few stages went without ahitch and by mid-October 2006 wewere in a mid-Devon village, taking upa six month rental on a property thatsuited us down to the ground. Thegrand plan was to use the rentalproperty as a base from which toexplore the area and the local housingmarket - a strategy recommended inall the best relocation manuals!

A week or so later my wife thoughtwe should register with a local GP - adecision that probably saved my life.During the consultation the GP askeda number of questions about myfamily history and my recent health.‘In fine fettle,’ I replied. I did brieflymention that with the recentchallenges of retiring, selling up, andrelocating I had felt a bit lower onenergy than usual, had lost a bit ofweight and my bowel pattern hadchanged somewhat. The good doctorthat he was, he ignored my instantdiagnosis for these apparently minorsymptoms and promptly arranged fora colonoscopy.

On the 29th November 2006 - my60th birthday no less and just twomonths after retiring - I found myselfin Surgical Outpatients where I was

informed of the test results: there wasa tumour low down in the sigmoidsection of the colon and ‘would Iprefer to have the operation justbefore or just after Christmas?’

Easy decision - the consultantreckoned that as I was “young and fit”,was not overweight, had neversmoked and had no other underlyinghealth issues that I would be in and

out of hospital in six to seven daysand home for Christmas lunch! Theimpression I gained was that theythought the tumour had been caughtearly; there would be no need forchemo and the bowel could be re-joined without the need for a “bag”.Simple!

The reality was something else. Irecovered quickly from the operation

Eventually, after what seemed a lifetime, I was discharged on the28th January and being at home again soon made me feel a little bitbetter. I must admit that in those first few days at home without thesupport of the colorectal nurses I found the bag to be a realchallenge but as it had helped save my life I knew I had to accept itsexistence.

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and next day I sat out in a chairbeside the bed for most of the dayand 24 hours later was exploring thehospital corridors – albeit grimacingsomewhat with the pain from thelaparotomy and the strange numbnessin my rear end! I even enjoyed abowl of soup and some yoghurt. Acouple of days later, however, thedownward spiral began:overwhelming feelings of nausea, lossof appetite, raised temperature,vomiting (with bile) and hiccuppinglasting for hours on end. Just thesmell of food was enough to turn mystomach.

Then success – or so I thought: on the28th December after being in hospitalfor eleven days I somehow managedto keep down both breakfast andlunch, and persuaded the hospital todischarge me.

On the 1st January 2007 I was back inagain with a suspected “leak”. Prettyobvious really as an evil smellingliquid had started to seep through thepartly healed laparotomy. I knew fordefinite that now I would have tohave a bag.

If the first stay in hospital had been achallenge then what was to followover the next four weeks was a bit ofa nightmare. A week or so aftersurgery my condition had deterioratedto the extent that I had to be fedintravenously; I still had a drip andcatheter attached, had a drain downthe nose and throat into the stomachto remove the bile, and I still neededoxygen. From being someone whohad hardly had a day off work in thepast 37 years I had become, over acouple of weeks, a virtual invalid. Andof course there was still theunderlying matter of the bag whichhad suddenly come into my life. Justto cheer me up, and when I was atmy lowest ebb, I was given the biopsyresults: the tumour was judged to bea stage “C” which meantchemotherapy!

Eventually, after what seemed alifetime, I was discharged on the 28thJanuary and being at home againsoon made me feel a little bit better. Imust admit that in those first few daysat home without the support of thecolorectal nurses I found the bag to

be a real challenge but as it hadhelped save my life I knew I had toaccept its existence.

Six weeks later, once I had managedto regain some of the weight that Ihad lost in hospital, I startedchemotherapy. This took the form ofCapecitabine tablets, 500mg each and896 in total over the following 24weeks! I was amazed that chemocaused me no side-effects whatsoever.I did have occasional bouts oflooseness but this could havehappened anyway. Chemo finished atthe end of July just in time for me toenjoy my daughter’s graduationceremony which, six months earlier, inone of my bleakest moments on theward I was convinced I would neversee.

September ‘07 saw me called in for aroutine CT scan to check if anythingnasty had re-appeared. The resultsshowed no sign of cancer but didshow pulmonary embolisms whichmeant that I was put on Warfarin forthe next 18 months.

In February 2008 we moved out ofour rented accommodation - theinitial 6 month period had by nowbecome 16 - to buy a house in asmall town outside Exeter. Although itwas in a good state of repair therewas always something that neededdoing and I found that having a seriesof projects helped take my mind offmy “rotten luck”.

Meanwhile, better news began tocreep above the horizon. Regularscans and bloods showed norecurrence and I started to feel moreconfident about the future - Iremember clearly the oncologistsaying at our first meeting that thefirst two years were the highest risk.However, any thoughts of a reversalwere still far away.

Over time I became more confidentwith the bag and its little foibles.Holidays that had been put on holdnow appeared on the radar. I havealways been a totally relaxed travellerbut the bag always played up whenflying. On one memorable occasionwhen I was in the toilet having tochange the bag we experiencedAlpine turbulence and the “Fasten

Seatbelts” light came on! The mindboggles!

So what encouraged me to go for areversal? The main factor was ourmiddle child’s announcement inOctober 2009 that he was gettingmarried in the West Indies in March2011.With no bag to play up the 10hour flight would be a doddle, plus Icould enjoy all those other activitiesthat would be part of the week-longcelebrations. Plenty of time thereforeto go for a reversal; if it didn’t workout then I could always have“Clarence”, my stoma, put back.

The surgeon confirmed that thecolostomy was reversible but stressedthat if the colon had become toobrittle then it might not be possible.This, however, could only be assessedonce he had opened me up (anotherlaparotomy). Because I had leakedpreviously there would have to be twooperations, one to join the colon andcreate an ileostomy and then, threemonths later, a fairly minor op to dothe final connection between thesmall and large intestine.

I went in at the end of April for whatshould have been a six day stay as Iwas still regarded as being “youngand fit” (if only). As soon as I wasbarely conscious I instinctively pattedmy left side only to discover that abag was still there. However,“Clarence” had been converted intoan ileostomy; the surgeon had rathercleverly re-used the opening for thecolostomy rather than creating a newincision in my right side (the usuallocation for an ileostomy). So panicover!

A few hours later, however, I suffereda post op rectal bleed and this was toplague me for the next four to fiveweeks: standing up for barely tenminutes at a time produced an urgentsensation to “go” which resulted in anevil-smelling concoction of stale, blacktarry blood and other unmentionablesleft over from the operation. It didclear up eventually, as the surgeonsaid it would, but it did mean that forthe whole of May I was confined tothe house and the garden.

But there were other challenges toface. The operation to rejoin the colon

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low down in the sigmoid sectionmeant that the surgeon’s knife had tocome very close to the nerve endingsin the “waterworks department”. Twicewhilst in hospital I had failed to passwater so the catheter had to stay inand I obviously began to fear theworst.

With more than three years’experience of a colostomy, I had notrouble converting to the demands ofa busy ileostomy. On the ward it didseem to be much sloppier than Ithought it should be. When I wasweighed seven days after the op I hadlost just over 6kg (almost 10% of mybody weight). The iron tablets to buildup my bloods after the rectal bleedwere causing diarrhoea; I had alwaysthought that iron tablets producedexactly the opposite effect!

Eleven days after the op I wasdischarged and now began thevarious challenges of getting to knowthe ileostomy, and coping with therectal discharge, the catheter and myconcerns about possible nervedamage. Mercifully, after what seemeda very long six weeks, everything

turned out alright in the end. On the2nd June the catheter was removed inoutpatients and a successful resultensued, but only after I had downedtwo litres of bottled water and severalcups of tea in barely an hour.

In early August the time came torejoin my small and large bowel - anoperation lasting just 30 minutes. Thesurgeon had warned me that, basedon his experience, I could expect“thunder and lightning” for at least acouple of weeks after the reversal andon the second day after the op I didhave to “go” 16 times in 24 hours, sothings initially looked rather ominous.However, a day later, it had settleddown to its long-term average andamazingly just seventy-two hours afterthe operation - and as predicted - Iwas on my way home.

So, after 48 months with a stoma, Iam now joined up again; the bowel isbehaving itself and I generally onlyneed to visit the toilet 2-3 times a day.It has never been loose - in fact,sometimes just the opposite. I mustbe a contrary patient!! I still watchwhat I eat and take note of what

might have caused anything out of theordinary - unfortunately my wife’s fruitcake is still a “no go” area for me as isfizzy water!

I got there in the end and as they say:“No gain without pain”.

Am I making plans for the future?Well, maybe, but I’m certainly nottelling anyone this time around, that’sfor sure!

Ken Tresidder

P.S. Despite what I have endured, Iwould like to offer my sinceregratitude to the surgeon, his team andall the other hospital staff who havehelped me over the past 4 years..My view is that bowel surgery is agreatly under-rated area of medicalexpertise; it is only through the skilland dedication of experienced anddedicated professionals that I am stillhere to tell my tale.

Just had my most recent scan results -“no recurrence”.

Security...

HydroFrame® gives you security, comfort and flexibilityHydroFrame hydrocolloid flange extenders provide additional adhesion for your stoma pouch.

HydroFrame is cost effective as it can reduce the number of pouch changes by increasing pouch wear time and preventing leaks, especially when putting extra pressure on your flange such as when gardening and playing sport.

HydroFrame is the ideal alternative to more aggressive medical tape which can lead to sore skin.

HydroFrame® mini – same security, smaller sizeNew HydroFrame mini hydrocolloid adhesive strips is the ideal solution where smaller areas of adhesive are required such as paediatrics or areas of sensitive or damaged skin.

For a free sample of HydroFrame® or HydroFrame® Mini, please call our free confidential careline0800 036 0100 or visit www.clinimed.co.uk.

CliniMed® and HydroFrame® are registered trademarks of CliniMed (Holdings) Ltd. Cavell House, Knaves Beech Way, Loudwater, High Wycombe, Bucks. HP10 9QY. ©2011 CliniMed Ltd.HydroFrame patent numbers: GB 2 397 230B; EU 1,587,467B1 and 1,736,125B1 1284/0710

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We have a range of information sheets available, please tick the relevant boxes for those that you require.

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Irrigation and you...Sue Hatton Executive Trustee writes…I can highly recommend to anyone thinkingabout irrigation to Google ‘Colostomy Irrigation.’ Two video links will presentthemselves. Simply click on ‘Colostomy Irrigation for Bowel Cancer and Colon Cancer’and you will be automatically transferred to YouTube. Here you will find a brilliantvideo presented by Brian from New Zealand. If you don’t use a computer, get yourchildren to show you or your grandchildren, they and you will be fascinated!

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 toIrrigation’ 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

It’s good to hear from proficientirrigators that they have beenteamed up with colostomates whohave recently started. It is a greatcomfort to be able to phonesomeone who knows how it is doneand can give first hand experience.Thank you to the stoma care nurseswho are ‘buddying’ people up.

In the last issue, Janet Bradley queriedusing water from the hot tap to fill thewater container. She understood thatwater from the hot tap was notpotable (suitable for drinking).Dansac’s Senior Marketing Co-ordinator, Kerry Jones sent in thisreply…‘It is fine to add water from thehot tap. It’s a fact that hot water cancontain more bacteria compared towater from the cold tap, which is whythey advise that in countries whereyou can drink water from the cold tap,it’s fine to use water from the hot tapto irrigate. However, in countrieswhere you are advised not to drinkfrom the cold tap, use either, stillmineral water or boiled tap waterwhen irrigating.’

Dave Gordon writes (via email): ‘Ihave been irrigating for more than 14years and have done a fair bit of travelin that time (three times aroundEurope in a touring caravan, cruises -Caribbean, through Panama, Suezdown to Rio de Janeiro, the Baltic andothers. He has also played pipes withthe band at folk festivals in Germanyand France.)

I have only once had an infection inmy colon/stoma and think it was fromthe ship’s water on the Suez Cruise.My tip, which may help others, is tocarry a plastic jug with a lid in my kitand I fill it up the night before andadd a sterilising tablet (obtainablefrom ‘Boots’). I also carry a weeelectric kettle which I boil in themorning to sterilise and warm up thewater already in the jug. The biggestproblem for travelling irrigators is

where and how to hang the reservoir.I carry a publican’s optic clamp, twosizes of hooks and a roll of strongstring and so far have not been stuck.’

Dave recommends taking an extrapiece of tubing with a connector asoften the only place to hang up thereservoir is too far from the toilet. Ifthis happens to me, I sit on a chair,next to the reservoir, with the sleevein the plastic pedal bin. When thewater has gone into the stoma, Iswiftly seal the bag and move to theloo. Many irrigators prefer to sit on achair by the loo rather than sit on theloo seat – all a matter of choice!

Dave also wishes that manufacturerscould consider improving the irrigationkit. He would like to see a plastic zipalong the top of the sleeve as he isstill using two clothes pegs for thesleeve or irrigator drain. I useColoplast sleeves which have thefreezer bag twist to close the bag andI am comfortable with this, any ideasfrom anyone else? Thank you Davevery much for taking the time to writein.

A terrific letter from Hilary Spaltonwho had her stoma as a result ofchronic Diverticulitis...She says thatshe was enjoying life to the full, sheran her own successful business,socialised, enjoyed going to the gymand even took up skiing at the ripeold age of 59. I have run out of spaceto publish her whole letter, but it is asad journey of grim surgery anddistressing life with her colostomy.She finishes her story bywriting…‘however, for me there hasrecently been a great stride forward. Idecided to try ‘irrigation’ and it hastransformed my life - living with acolostomy. I am now totally relaxedthroughout the day in the knowledgethat I am not going to experience anykind of horrible episode or socialembarrassment.

I have a routine that takes no morethan 30 mins at the end of the dayand means I no longer have to wear acolostomy bag. I feel clean and freshall the time and confident enough todo all the things I used to do withouta second thought. The longer termplan is to reverse the colostomytowards the end of 2011, dependingupon my general health. However, ifthis timescale gets pushed back I amquite relaxed about it, knowing thatmy life is no longer ruled by mycondition and that there are manymore things to enjoy again.

Sue writes: I am hoping to have a hipreplacement in March. I have had itpostponed four times due to shortageof beds, infections and my surgeonbeing ill. This will be the fifth time thatI have been in hospital for surgerysince my colostomy, kneereplacement, gallstones, broken legand broken ankle! I have had to copewith blockages caused by thepainkillers and have found thatdrinking copious amounts of waterand having an extra irrigation havehelped to shift the offending hardlump of poo! It will be greatilluminating the surgical staff aboutbeing a colostomate who irrigates!

2 2 | T I D I N G S | S P R I N G 2 0 1 1

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

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

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

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

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

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Regaining lostweight...During periods of illness orhospitalisation many people find theyhave lost weight. This can be more ofa challenge to regain if you have astoma, particularly in the early stageswhen you are still getting used to dayto day life with a stoma which can beunpredictable.

Many people find that their bodyimage has changed followingformation of a stoma and struggling toregain lost weight and fit into yournormal clothes again can contribute tothis problem. Appetite is oftenaffected which makes increasing yourintake more of a challenge.

You may also find, particularly if youhave been very unwell, that, althoughyou are eating the same as usual, youstill can’t regain lost weight. This isbecause during times of illnessadditional nutrients are required tofight infection or disease. This willmean that you require additionalenergy and protein just to maintainyour normal weight which can be astruggle.

It is important that you aim tomaintain your Body Mass Indexbetween 18.5 - 25kg/m2 to ensuregood long term health and a fullrecovery from your surgery. If yourBMI falls below 18.5kg/m2 you are atgreater risk of problems such as

delayed wound healing, muscleweakness, malabsorptive problems,low mood and lethargy.

This article aims to give you a fewideas on how to regain lost weightwhilst accommodating for your stoma. If trying to increase the volume offood you are eating is difficult due toyour appetite or stoma function,eating little and often is helpful.

Fortifying your foods with extracalories and protein without addingbulk is a great way to make everymouthful count.

Try these simple food fortificationideas:

• Add 2-4 tablespoons of skimmedmilk powder to 1 pint of full fat milkand mix well. Use this as you wouldordinary milk. If you don’t like full fatmilk, semi-skimmed milk can befortified in this way

• Have milky coffee or hot chocolatemade with the fortified milk instead oftea or ordinary coffee

• Add butter to vegetables

• Add grated cheese or double creamto soup, casseroles etc

• Snack on crisps, biscuits or cheeseand crackers throughout the day

• Add honey, syrup or sugar to cerealor porridge

• Make smoothies with fresh fruit, milkand ice cream or full fat yoghurt

• Have plenty of butter, margarine andmayonnaise or salad cream insandwiches

• Aim to drink one pint of fortifiedmilk or full cream milk per day

If your appetite is the main problem,try some of these tips forovercoming a poor appetite:

• Do not drink with your meals; thiscan make you feel fuller quicker andmake food rush through your boweltoo quickly

• Try cold snacks rather than hot; theycan be easier to manage if it takesyou a long time to eat as you will nothave to reheat them

• Try to have your favourite foodsavailable at all times to tempt you

• Smoking decreases appetite so try tocut down or stop if you can

• Try placing the dining table near awindow or eat with other people tomake meal times more pleasant

• A small glass of wine or sherry, or ameasure of spirits, half an hour beforea meal can help to stimulate yourappetite - check with your doctor ornurse first that alcohol can be taken

• Preparing foods can sometimes betoo tiring so keep available a selectionof foods which require minimalpreparation such as ready meals orconvenience foods

• Remember, having something isalways better than going without

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

Foods which are good for gainingweight and patients report help tocontrol loose stools include:

• Low fibre biscuits

• Arrowroot biscuits

• Rice pudding

• Ripe bananas with custard or yogurt

• Mashed potato with cheese

• Smooth peanut butter

• Jelly sweets

• Marshmallows

If you have not managed to increaseyour weight by fortifying your diet orincreasing your intake, your doctor,specialist nurse or dietitian may haveprescribed nutritional supplementdrinks such as Fortisip, Ensure Plus orFresubin Energy. These can be usefulif you are struggling to regain lostweight as they provide you withenergy and protein as well as vitaminsand minerals in a small volume. Thereare similar products such as Complanand Build-up available from largesupermarkets and most chemists.

Here are some tips for helping youto take your nutritionalsupplements:

• Add lemonade or soda water toJuice style supplements to dilute them

• Add extra milk to Milkshake stylesupplements

• Serve over ice

• Split into 50ml ‘shots’ and take atregular intervals

• Add to puddings and hot drinks;‘neutral’ flavoured supplements canbe added to sauces, soups andcasseroles

• Blend with ice cream for a deliciousmilkshake

• Most importantly, they are alwaysbest cold from the fridge

If you find that increasing the fat inyour diet increases your stoma outputand this becomes unmanageable it isimportant that you discuss this withyour stoma specialist nurse or yourdoctor. They may suggest anti-diarrhoeal medications, thus allowingyou to continue improving your intake. Try taking starchy carbohydrates suchas rice, pasta, bread, crackers/biscuitswith the high fat foods; this may helpyou to tolerate them better.

If you are continuing to haveproblems gaining weight, or youfollow other dietary restrictions thatconflict with the above advice, andyou are concerned please contact yourstoma nurse who may refer you to adietitian for advice tailored to yourneeds.

And remember, if you feel that yourdiet is very restricted and you arestruggling to increase the variety, it isa good idea to take a good qualitymultivitamin and mineral supplementdaily. If you have any concerns aboutthis please speak to your doctor ornurse before doing so.

Your diet questionsanswered...

Q: I read your article in thewinter edition of Tidings withinterest, but what sort of diet wouldyou advise for a patient, like myself,with both Type 2 Diabetes and aColostomy?

On being referred to a dietitian I wassent to either one in the DiabetesClinic or spoke to one specialising inStoma Diets on the General Surgeryward. Here lies the problem – neitherof the dietitians were able to providea diet that was manageable for apatient with both conditions.

Also, like many Ostomists, Iexperience problems digestingvegetables/fruit and fibrous foods, inmy case possibly due to adhesionsresulting from many surgicalprocedures on my stomach, or foodintolerance. This results in severecramps leading to vomiting or loose‘output’. Whilst I try to eat a ‘healthydiet’ I have to watch out for thosefoods that aggravate this conditionwhilst trying to get my BMI down

A: Thank you for your question andI’m sorry to hear you’ve had problemsgetting the help you need.Unfortunately, without a lot ofadditional information it is verydifficult for me to give you any morespecific advice. As outlined in myprevious article, it isstill possible tosuccessfully loseweight with anileostomy or colostomyfollowing a low fibre diet.However, I appreciate that itmay be more difficult tocontrol your blood sugars ifyou are eating low fibrecarbohydrates to control your

obstructive symptoms. You may findthat increasing your physical activityaids both your weight loss and bloodsugars and is obviously very beneficialfor long-term health.

If you need further advice from adietitian I would suggest you callyour local dietetics department andask to discuss your needs with theLead Dietitian to identify a dietitianwith the appropriate skill mix tohelp you.

2 6 | T I D I N G S | S P R I N G 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 phoned the ColostomyAssociation to ask if I need to returnthe RADAR key I bought16 monthsago. The reason? My reversal inOctober was successful and I am nowbagless. Since I shared how I felt at 10weeks and 10 months as acolostomate, I thought I might finishwith some thoughts on the reversalprocess.

I realise, of course, that there aremany for whom a reversal is not apossibility. Even in situations whereyou are told that your colostomy istemporary, having further surgery isprobably not the main thing on yourmind when you wake up in intensivecare with your first bag attached. Thesurgeon informed me that a reversalwas possible but could only beconsidered after several months. Mybody had to settle down from its twobouts of major surgery, andchemotherapy was on the horizon.

In theory, therefore, there was plentyof time to think about it but I keptpushing the idea away. Why? Well, asever, there were other things to dealwith. Chemo for one and the bagitself for another. I got used to havinga bag. If a reversal wasn’t possible, Iwanted to see the colostomy as, if notexactly desirable, then at least assomething I could incorporate into mylife and routine. I read lots of posts oncolostomy websites and found that, aswith all things in life, expectations,experience and reactions variedwidely.

This was also true when I read aboutthe experiences of those who havehad a reversal or were considering thissurgery. Some had found it a breeze;others had horror stories to tell. Whenmy surgeon first suggested that Icould now consider a reversal, Isuppose it was the horror stories thatwere uppermost in my mind – I dohave a very active imagination. I wrotedown lists of the pros and cons ofsurgery and the possible outcomes:reversal impossible; temporaryileostomy; another leak into theabdomen (cause of the originalcolostomy).

Strangely, the one scenario I didn’trehearse in my head when I woke upin the small hours was that theoperation might be successful. Thiswas despite the reassurances of theconsultant and from someone I knowwho had undergone this surgery anumber of years ago. Perhaps I didn’twant to wish too much for success incase I jinxed the process in some wayand upset the deities dealing withcolonic matters. When it’s happeningto you, no amount of philosophy andrational thought is going to help.

It was my brother who helped me toaccept the process (though heprobably doesn’t know the effect hiswords had on me.) He said that I’d gothrough with it because I would lookon it as a challenge or as anadventure. I was a bit dubious aboutthis analysis at the time but dideventually decide that this was asgood a way to look at it as any other.

I had forgotten what a painabdominal surgery could be (in moreways than one.) I do rememberwaking up in the recovery room andasking groggily whether I was still inpossession of a bag. No, I was told.I’m not sure now how that felt –disbelief, relief, crossness with myselfthat I had worried needlessly aboutthe outcome. As usual, a wholemixture of feelings.

Recovery in hospital had its ups anddowns. I was there for eight days and

had support from the stoma andspecialist colorectal nurses. I wasgiven a stool chart (in colour) so Icould record output. As I reported to anurse after the first happy event “Theeagle has landed.” Unfortunately, shewas a little too young to recognise theallusion to a momentous event butthat didn’t stop me suggesting thatlaminated stool charts could becomea talking point at dinner parties. Irealised that I was going to have tomoderate my excessive new foundenthusiasm for going to the toilet.There are some people with whomyou can discuss these things andothers who definitely see it as toomuch information.

Coming home was like a repeat of lastyear but with a much more upbeatfeel – no chemo ahead, no decisionsabout surgery to be made. I kept adiary for a couple of weeks detailingbowel movements and my foodintake. My fear (of multiple daily visitsto the toilet) was unfounded. Thingssettled down quite quickly and nowit’s once or twice a day, just like it wasbefore this all started. I’ve donated myspare supplies to the stoma nurse,dismantled my supplies trolley andgot rid of my nappy bin throughFreecycle. I have quite a lot of scars(from previous as well as recentoperations) but, since my bikini-wearing days were over many yearsago, this is not likely to be a problem.

Even the bad weather aroundChristmas didn’t worry me. I hadopted for surgery at a time when Iwas unlikely to want to go out. Evenwhen I started to go stir crazy frombeing indoors all the time, I knew thatit didn’t really matter. After all, half thecountry was stranded indoors by snowand the other half was stranded atairports or on motorways. And I couldstart worrying about other things, suchas, did I need to return my RADARkey.

Susan Fifer

Reverse Gear…

In the last of her three articles Susan Fifer tells us about her reversal andhow she feels now....

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

H E A LT H E X E R C I S E

Exercise not only improves yourphysical health, but also improvesyour sense of mental well-being.Regardless of having a stoma or not,you should aim to do at least 30minutes of moderate (non-intensive)physical activity five days a week.

Moderate exercise can include goingfor a gentle walk, or doing somegardening. However, if you have beeninactive for a long period of time, tryto build up to 30 minutes a day overthe course of several weeks. Also,avoid high-impact exercises, such assports that involve hard jolts to yourbody, for example football or squash.

Always start an activity slowly andgently, warming up before you startand cooling down at the end.Remember to drink plenty of fluid –try to take regular small sips as thishelps to keep you better hydrated.

Whatever you choose to do, startslowly and steadily, trying not tooverdo anything, until you find a levelyou are comfortable with. It may beworthwhile seeing a professionalinstructor in whichever sport orphysical activity you would like to beinvolved with. Some gyms have

specialist programmes for peoplerecovering from surgery or withspecific types of illness, disability ormedical condition. You may wish todiscuss this with your GP, PracticeNurse or Stoma Care Nurse, as theymay be able to refer you onto one ofthese schemes.

Please remember to always ensurethat you have checked with yourmedical practioner before youcommence any type of sport orphysical activity.

Pilates can be especially suitable forostomates as the exercises can befairly easily adapted to suit theindividual and can be very gentle andnon-threatening. This type of exerciseis particularly good for developingstronger abdominal muscles, which inturn helps keep your back strong andcan sometimes help in preventing anabdominal hernia.

Check out your local leisure centre(details can usually be found on yourcouncil’s website) as they will have awhole list of things you can try. Your local Primary Care Trust mayhave a list of health walks in your area– a great way to get fit and meetsome new people.

When you feel the time is right for youto start exercising, I am happy to talkto you via email or phone. I can becontacted via the ColostomyAssociation on: 0118 939 1537.(I am also happy to talk to any fitnessprofessional that wants to know moreabout exercise and stomas).

Whatever you want to try, keep to afew simple rules...

• Check with your GP or SCN beforeyou commence any exerciseprogramme.

• Start slowly

• Stop when you’ve had enough.

• Enjoy the experience!

• Don’t feel intimidated.

Research has shown that regular exercise no matter how insignificant canbe of real benefit to everyone...today we are encouraged to get out thereand do our daily 30 minutes. Deciding what type of exercise will suit yourlifestyle can be a problem...however the next few pages may give yousome ideas...

Exercise...how about it!

Bronwen Lowy CA volunteerexplains thebenefits...So, what are the key benefits ofregular exercise...

• Improved mobility andkeeping your muscles strong.

• Improving your sense of well-being - may help to reducefeelings of stress ordepression and make you feelmore confident.

• Can help to reduce thelikelihood of becomingoverweight or obese.

• Helps prevent some illnessesand boosts your immunesystem.

• Reducing your risk ofdeveloping heart disease, type2 Diabetes and osteoporosis.

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

H E A LT H E X E R C I S E

Swimming and Aqua Aerobics

are considered greatall round types of

exercise and activityto keep you fit and healthy. Sue Hatton shares her past and

recent swimmingexperiences

with us

I have always loved swimming. I spentthree idyllic years with my parents inSingapore from the age of 9 and everyday I was in my bathing costume (asthey were referred to 50 years ago). Ithen went to boarding school inAshford and early in the summerterm, we were required to leap intothe unheated pool and thrash up anddown before emerging dripping,freezing, lips blue with cold. I cannotimagine any schoolgirl doing thatnow.

There were outdoor lidos. I have avery fetching photo of me in a bikiniaged 19, posing at Guildford lido. Iwas a young officer cadet and thoughtthis lime green, towelling creation wasan eye-catcher – ah...those were thedays! Then marriage and 3 daughterslater and the figure fell into a vastlydifferent shape, but I still swam withthe girls and loved the occasionalwarm seas of holidays that we savedfor. Then the girls grew up and I had asedentary job and the weight piled onand I made every excuse not to findtime to exercise.

So aged 46 I had bowel cancer andfor 2 years until my stoma wasformed, I didn’t go out much and Icould not have considered swimmingmore than I could think I could fly. However, my husband Neil and Ibegan to think about holidays abroad,we went to Cyprus and rented a ‘villa’(they call all properties villas, this wasa 2 bedroomed bungalow, and it hada pool).

What heaven it was! I had the samecostume that I wore in my early 40’s,very threadbare around the rear, but itdidn’t matter, no-one could see meand my husband was delighted that Iwas sploshing around in the water.

I irrigated every morning, but I couldnot get on with plugs, or small caps, so I swam with my usual one-piecepouch. It was fine and the adhesivedidn’t peel off in water. I had quite aselection of bags with me as I alwayscollect samples from Patient OpenDays and enjoy trying on differentmakes for different days.

Now 14 years on arthritis has set in. Ihave had a knee replacement and, ifmy hip is to be replaced, I have tolose weight and get fit. For somereason, I could not get my headaround going to the local pool, buthaving grandchildren changed all that!

Katy came to stay with Orla (aged3years) and Amelie (aged 18months)and Granny needed to help with AquaShrimps. Somehow, helping with littleones and having the attention takenoff me, made it easier to cope withthe communal changing room. Whoon earth is watching a Granny getchanged! I had put my costume on athome. You may be glad to know I hadbeen given a new one, floral andruched over the tummy, (plain onestend to show the outline of the stomabag). It was wonderful to be splashingaround with these two little girls and Iloved every minute in the water even

Focus on Swimming...

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

doing aqua fit aerobic exercises that Ihad learnt in enthusiastic times in my30’s.

As we were leaving the pool, the nextsession of swimmers were arriving.They were mostly disabled, peoplewith strokes, on crutches oroverweight. My daughter asked whatthey were doing, and we were toldthis was the Action Leap, a free classfor anyone who wanted to get fit buthad some form of disability. Shesuggested that I stay on and join inwhile she took the girls to the swings.

That was my first introduction toHelston Pool. Now I try to swim atleast twice a week with the over 50’s.I am a typical ‘head clear of the water,hate getting my hair wet, breast strokeswimmer’, but my brother sent megoggles and a nose clip and told meto get crawling as I won’t be able tobreast stroke when I have my hipdone. It was really liberating to get myface under the water and to try thecrawl.

When the ladies from this disabledgroup all returned to the communalchanging room to strip out of theirswimming cossies, there were threewho had stoma bags! No one wasembarrassed though I still preferred tostrip off under my towel. Skirts areeasier than trousers I have discoveredand my ‘crocs’ have been ideal forslipping on and off my feet. One ladyhas sewn 2 towels together leavingopenings for her head and arms andshe neatly divests herself of her wetgear with complete modesty.

I have since found myself a‘boyfriend’, Brian, who had his hipreplaced last year. We stop after 5lengths to pass pleasantries on thestate of our joints! We are infuriatedby the ladies who gossip and take upthree lanes, which we have to skilfullynegotiate, but there is a lot of smilingand quick chats.

I will not be able to swim for threemonths after my hip is replaced, butlook forward to rejoining my groupwhen I have the new hip and don’thave to hobble; maybe I deserve anew swimming cossie to go with thenew ‘Me’!

There is no doubt that the high streetoffers the ostomate interested inswimming variety and choice. But dothe garments available really have allthe answers?

The following is a list of criteriaimportant to ostomates when lookingfor swimwear...

• functional attractive designs • built-in discretion and disguise • comfort and added support• security options for confidence• high waisted options

Here are some Top Tips...to help you find your perfectswimwear...

For ladies...• Choose swimwear that makes youlook good and feel confident. Go fora one piece with or without straps.

• Choose patterned fabrics asopposed to plain ones which willhelp disguise your pouch..

• Check out the material (Lycra) toensure a good fit that is bothcomfortable and supportive and willkeep your pouch in place.

• Choose swimwear with a ruchepanel and lining or double layeredfabric to the front which will helpsupport your pouch.

• Try a two-piece Tankini some arenow available with high waistedshorts.

For men...The main consideration for menwhen choosing swimwear is theposition of the stoma.

Specialist suppliers make trunks thatare 4.5cm longer from crutch towaist, than high street retailers,which avoids the waistband cuttingacross the stoma and keeps thepouch hidden.

• Go for patterned fabrics as opposedto plain ones.

• Look out for high waisted trunks e.gboxer or boarder style.

• Check inside the trunks as somehave internal pants to give extrasupport and privacy.

• For security look for trunks with awide elasticated waistband anddrawstring.

If you are worried about your pouchbecoming detached whilst swimmingbuy a specially made swimsuit or pairof shorts with an integral securitypouch.

For children...• Let them choose their swimwearunder guidance this will give themadded confidence.

• Check out the Hi Line swimmingrange - ‘Swimwear for SpecialPeople’ from OstoMart. Theswimwear is manufactured with asecure integrated waterproof pantwhich helps contain any accidents.

• Also check out Tankinis or onepiece swimwear for girls and highwaisted trunks for boys.

Here is some advice that youmay find helpful whenswimming...

You could try wearing a smallerstoma bag under your swimmingcostume or trunks as these can bemore discreet.

Choosing and Buying Swimwear...

Filters on your appliance can workpoorly or not at all once they’re wet ordamp. Some ostomates tape theflange edges, some don’t. If you havea filter on your appliance this shouldbe taped so water doesn’t damagethe filter. If you’ve changed yourflange before swimming it’s a goodidea to wait an hour before goingswimming to make sure it hasadhered properly.

Your stoma care nurse will be able toadvise on the many different varietiesof appliances available. If you areworried about damaging your stomawhilst swimming, although this isunlikely to happen, you could trywearing a stoma shield.

Remember that the great majority of‘normal’ people have lumps, bumpsand imperfections on their bodies -very few of us are model perfect inthe first place - and nobody is goingto be staring at you.

(NB: It is recommended to avoidswimming in artificial pools, spas andthe sea for at least six to eight weeksor until your wounds are completelyhealed because of possible infection.)

Buying swimwear specificallydesigned for ostomates may give you more comfort andconfidence. Here are a fewspecialist manufacturers andsuppliers....

• Comfizz - Waistband support wearthat can be worn under regularswimwear for that extra layer ofsecurity.Contact: 0113 289 6876www.comfizz.com

• Cuiwear - Ladies available in sizes 8 – 24 Gents (one style only)sizes sm – xxl. Call for full colourbrochure.Contact: Tel 0800 2792050www.cuiwear.com

• Glitter Beach - Ladies swimweardesigned by an ostomate.Contact: Tel 01505 843306www.glitterbeach.co.uk

• OstoMART - Ladies swimwearavailable in sizes 10 – 24Gents available in sizes sm – xl.Contact: Tel 0800 220300www.ostomart.co.uk

White Rose Collection Ltd - Ladiesavailable in sizes 10 – 22, one pieceswimsuits and tankinis in varyingdesigns and colours. Gents availablein 32 - 48 ‘White rose collection’ and‘Just Men’ catalogues availableContact: Tel 01202 854634www.whiterosecollection.com

• Vanilla Blush - Ladies and Gentsunderwear and swimwear, also ladiesbridal lingerie.Contact: Tel 0141 7630991www.vblush.com

H E A LT H E X E R C I S E

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

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

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

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

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

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

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

Ref. no. S1

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

Ref. no. SR103

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

“the ring of confidence”

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

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

•

•

•

•

•

•

•

•

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

Alternatively, call us on Freephone:

or email us at mediownlabel@aah.co.uk

0800 626 524

NEW Ostomy Accessory Range

All available on Prescription

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

Sting free Lifteez Adhesive Remover and Derma-S Barrier Film

Excellent Quality and Value

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

d d

Distributed by:AAH Pharmaceuticals Limited,Coventry, CV2 2TX.

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

kept updated regarding any information about relevant products and services.

Please send me samples of the following products (Please tick):

Derma-S Barrier Film - Non Sting Wipes AerosolLifteez Adhesive Remover - Non Sting Wipes AerosolDerma-S Barrier Cream SachetsGelsorb Solidifying Agent Sachets

Name (Mr/Mrs/Miss/Ms):

Address:

Postcode:

Tel No: E-mail:

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

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

2011 got off to a flying start with aChristmas party in January! We wereall set for well over 100 peopleattending our Christmas celebrationsbut unfortunately things didn’t goquite to plan as mother nature laid acarpet of deep snow on the ground,snow continued to fall and so wewere unable to get the youth hostel inthe peak district.

Eventually, we did all manage to gettogether in January even though theevent was somewhat delayed. Wewelcomed many new families andreturning families. Speaking to a Mumand Dad who were feeling a littlelost – as they had just heard that theirson was going to require a colostomy– I invited them along to our weekendto meet other parents who I knewwould give them support andreassurance.

The children enjoyed climbing ThorpeCloud…they call it a mountain and Ihave to agree but technically it’s aVERY big hill! They climbed thestepping-stones over the river to getthere. They made and launchedrockets. Sang Christmas carols withone of the Breakaway Dads playing

his Cornet and enjoyed a yummyChristmas Dinner…it didn’t matterthat it was January they were therewith their very special friends andgreat fun was had by all. Needless tosay Father Christmas delayed hisreturn to the North Pole until he hadvisited our very special children anddelivered their presents…what a goodchap he is!

Julie BastinChairpersonBreakaway Visits

Will’s parents Mel and Ianshare their Breakawayexperience...

It is difficult to put into words whatbecoming part of the Breakawayfamily has meant to my husband andmyself but I shall try...Our youngest child Will has just turned9 and has always had faecalincontinence/constipation problems.After years of being told ‘it’s a boything’ we were referred to a PaediatricGastroenterologist and foundourselves at Great Ormond StreetHospital (GOSH). We were incrediblylucky to see a consultant who assuredus within 30 minutes that Will didhave a problem and that he would getto the bottom (!) of it. True to hispromise he has left no stone unturnedand we have the utmost faith in him.

We spent two years in and out ofGOSH undergoing numerous pressuretests, biopsies, MRIs and medicaltreatments, the results confirmed thatWill has no function in the last 25-30cm of his bowel, rectum orsphincter. His last set of tests finishedDecember 2010 and confirmed thatthere were no medical options leftand that he would need surgery tohopefully form a functioning bowelwhich would mean a colostomyfollowed by an ileostomy while thesurgery is ongoing. We came out of

GOSH on 17 December and threwourselves into Christmas. Christmaspassed, and then it hit, it was like abulldozer…our son required majorsurgery, leading to a colostomy, hewas 8, what will his friends say? Howwill we tell him? How will we cope?WE FELT SO ALONE.

We decided to learn, learn and learnabout it and our first stop was theColostomy Association. The Association and Tidings have beena wonderful source of help andinformation. We have been receivingTidings since the end of 2009 andhave learned a huge amount from thearticles and samples enclosed etc., ourremaining and major problem at thetime was emotional…fear andisolation. It was the ColostomyAssociation who signposted us toBreakaway and Julie Bastin -Chairperson of the charity.

Julie contacted me via Facebook, thenshe texted, then she messaged meagain and she carried on…listening tome crying on the phone (crying is aregular thing, happy or sad, I’m acrier!) she put up with my waffling.She was in Derby; we were in Kentand feeling incredibly isolated andlost. Julie then invited us to therearranged Breakaway Christmas partyweekend in January, just us asparents, to spend some time withpeople who were already in this worldwe were entering, to show us wewere not alone, to show us therewere people we could talk to.

Every mile we drove further north toIlam Hall I got more nervous, even aglass of wine in the pub where wehad dinner (because we hit so muchtraffic) didn’t calm my nerves. Wearrived to be greeted by a wonderfulmadhouse of kids runningeverywhere, Julie giving us namebadges and keys, people all millingaround chatting and laughing. It wasso overwhelming, I wasn’t ready, and Iwanted to go home and most of all Ifelt like I was intruding. I was sitting in

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the lounge with Ian trying to calm medown when a lovely lady calledDenise noticed I was trying to hidethe fact that I was crying, she cameover and asked if I was OK. As didsomeone else, then someone else,then someone else, then Julie cameand asked what was up and wasintroduced to my repetitive crying!That was it: to say we were welcomedwith open arms doesn’t come near todescribing the truly amazing way wewere enveloped in kindness andunderstanding.

We were astounded. We just sat andchatted to people who knew how wefelt, how scared we were, who hadbeen through the tests, the surgery,the telling the kids, the tears, theworries and who had learned to dealwith various stomas and the like. Wemet people who felt just as lost andisolated as us – who could supportus. We couldn’t believe that overlunch the next day we could just say,‘Oh, does he have to have a specialdiet?’ ‘How do we dispose of stomabags?’ in between talking aboutEastenders or whatever – we fitted in– we were part of the Breakawayfamily!

By Sunday morning we left as totallydifferent people - I was even dishingout details of a product I read aboutin Tidings to someone! Kisses allround, Facebook friends added…incredible.

When we left Ilam Hall we still hadn’ttold Will about his surgery, we werewaiting for a stoma nurse to do it withus because we had no idea how totell him. Thanks to the confidence wereceived from attending thisBreakaway event we told him allabout it the day after we came homeand I have since given an hour and ahalf talk to 30 kids in his class! Therewere several community stoma nurseswho attended the weekend, the mostwonderful nurse who works out ofour local hospital has since becomeWill’s community nurse who headores. Unbelievable.

Our family members cannot believethe change in us both since we cameback, we are still nervous but onething is different – we now know weare not alone – the strength thatBreakaway brings us is immeasurable– thank you to all concerned.

For more informationabout Breakaway...

Write to us or send a donation to:BreakawayPO BOX 7982SwadlincoteDE11 1FB

Telephone: 07903220040

Email: info@breakaway-visits.co.uk

Web: www.breakaway-visits.co.uk

Make a donation to Breakaway...http://www.justgiving.com/breakawayvisits

Breakaway are the UK's onlyresidential weekend activity breaksdesigned for young people aged 4-18 with bowel and/or bladderdiversions/dysfunctions, and theirfamilies.

Breakaway offers the opportunity tomeet others in similar situations, to talk, shareexperiences and to take part inconfidence building action adventureactivities.26th August 2011 for 3 nights YHA National Forest Derbyshire. * Spaces still available*

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

One of the largest of its kind everconducted by Coloplast, the OstomyCare survey included feedback fromover 500 nurses and some 1686people with an ostomy, both maleand female - 660 were colostomates.

Themes covered in the surveyincluded:- • Experiences during hospitalisation

• How training in daily care of thestoma was perceived

• Contact with stoma care nurses

• Social and emotional challengesconnected with living with a stoma

The survey revealed that almost 60%of people with a stoma haveproblems fitting a stoma appliancesecurely to their skin. The difficultiesare usually due to one or moreindividual body issues such asscarring, skin folds, uneven skinsurfaces around the stoma andhernias. Securely fitting an applianceto uneven surfaces can be a constantworry. Weight issues often add to theproblem.

For many people, living with a stomameans constant concern andinsecurity. For some – as many as onein three, according to the survey –the everyday problems of leakage,skin irritations and the emotionalchallenges are faced without talking to anyone about them.

Key findings from thesurvey revealed:

• 57% of people with a stoma haveproblems fitting appliances to their skin

• Over 50% of people who have beenliving with stoma for five years stillexperience leakage, skin irritationsand other problems that impact ontheir lifestyle and personal well-being

• One in three people who experiencepersonal difficulties suffer in silence,unable or unwilling to share theiranxieties with others

Feelings of insecurity caused by poorbody fit and leakage can havesignificant social and psychologicaleffects.

Senior specialist stoma care nurseCarol Katté says that body fit is aserious issue. “I can certainlyappreciate the views of those whofind living with a stoma challenging.For some it is a major life event.”Carol who works with the Ashford andSt Peter’s Hospitals NHS FoundationTrust in Chertsey, Surrey sees 200 newstoma patients every year followingostomy surgery.

According to the survey, leakage is themain concern for 60 per cent ofpeople during the first six monthsafter leaving hospital. Even after fiveyears 53 per cent of people living witha stoma still experience similarproblems.

“There are people who do suffer insilence which is why it’s important tomaintain regular follow-ups,” saysCarol. “However, even in the UK,where we have very advanced stomacare nursing services and access togood stoma products, it is not alwayspossible.”

Colostomate Vanessa Denvir agreesthat concern about an insecure bodyfit and fear of leakage can impact on– and in some cases ruin – people’slives. “It destroys their confidence inthemselves and a lot of these peopledon’t socialise or have a fulfillingprivate life because of theirinsecurities,” she says.

Vanessa appeared on Channel 4’sEmbarrassing Bodies programme totalk about her own experiences as acolostomate. She has also spoken at

national conferences about thephysical and psychological challengesinvolved.

Responding to the survey findings,Coloplast is preparing to unveil atechnological breakthrough whichcould make all the difference topeople living with a stoma. A new,unique colostomy product –SenSura® Mio – features arevolutionary elastic adhesive that isdesigned to improve body fit andreduce the risk of leakage.

Combining elasticity with the benefitsof modern stoma care adhesivescreates an adhesive that is bothflexible and adaptable to individualbody circumstances. Crucially, itmaintains a secure fit between thestoma bag and the stomach evenwhere there are skin folds, herniasand scarring. Designed as a life-changing ostomy appliance, SenSura®Mio will be available from mid-2011.

This innovative stoma care solutionmay well improve the lives andreduce the challenges of colostomatesand other ostomates ‘living with astoma’ providing renewed confidenceto start enjoying life again.

As Vanessa states, “Anything that helpsto restore people’s confidence andwhich will hopefully change their livesfor the better has to be good news.“

Editors Comment

To find out more about SenSura® Mio

visit: www.coloplast.co.uk where anyone interested in

using the new product can register their details

Revolutionary elastic adhesive innovationoffers life-changing solutionA recent international survey of people with intimate healthcare issuesuncovered the full extent of the difficulties and personal challenges theyface every day of their lives...

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

Coloplast develops products and services that make life easier for people with very personal and private medical conditions. Working closely with the people

who use our products, we create solutions that are sensitive to their special needs. We call this intimate healthcare. Our business includes ostomy care,

urology and continence care and wound and skin care. We operate globally and employ more than 7,000 people.

The Coloplast logo is a registered trademark of Coloplast A/S. © 2011/04

All rights reserved Coloplast A/S, 3050 Humlebæk, Denmark.

Coloplast Limited

First Floor, Nene Hall

Peterborough Business Park

Peterborough

PE2 6FX

Tel: 01733 392000

www.coloplast.co.uk

Responds to natural body movements

SenSura® Mio is a new colostomy appliance designed with an adhesive that is formulated to

enhance elasticity and fitting performance. The elastic adhesive is based on BodyFit™

Technology. It is pliable to individual body contours and maintains a secure fit as it responds

to natural body movements.

For more information, please visit sensuramio.coloplast.co.uk

Fits individual body shapes Feels secure

Coming Soon

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Way back at the beginning 2004,SCAR launched an appeal for surplusstoma care appliances to send on tothose desperately in need in thirdworld countries. The response wasmagnificent!

For a few years SCAR were able tohelp send supplies via various wellknow charities. Sadly though theirhelp began to fade and they were leftstruggling to find a means ofdistribution.

SCAR is a very small self fundingcharity but it was important to themto keep accepting all parcels thatcame into them as they had decidedto sponsor a young lady in Ugandaand were determined to continue!

More and more parcels arrived and itsoon became clear that they neededto find another route for the surplusthat had accumulated. Last yearTidings Winter issue 2010 featured anarticle called Spare Ostomy Supplieswhich outlined the work of Hospicesof Hope and also appealed for stomasupplies and related accessories to bedirected to them.

SCAR contacted Hospices of Hope andarranged a meeting with their ScottishDirector who was happy to take onstoma care supplies.

SCAR would like to acknowledge allwho have kept the charity going andwould like to send a big THANK YOUto those who sent in their sparesupplies.

SCAR would also like to ask you tosend any spare drainable bags directlyto them for their young lady inUganda. And to send any colostomyclosed bags or urostomy bags toHospices of Hope.

For more information about the work of SCAR please contact:

Maggie Littlejohn - OrganiserStoma Care and Recovery (S.C.A.R.)1B Redburn Gate, Irvine, North Ayrshire KA12 8THTelephone: 01294 271060 or 01294 557478

Email: maggie13@sky.com

An appeal from Hospices of Hope:

“Can you help us supply 72,000stoma bags this year?” That is whatour Moldovan partner HospiceAngelus is asking. In the poorestcountry in Europe they try to provide200 patients with 30 stoma bags eachper month in Chisinau, the capital city. The Ministry of Health in Moldovasees the dedication of its doctors andnurses and knows that patients needhelp. Currently they are making use ofsurplus British stoma bags to providepioneering stoma care.

If you can supply new stoma bags,please send them to Hospices ofHope, 28a High Street, Otford, Kent,TN14 5PQ.

If you need help with transportingthem, please ring Barbara Merronon 01959 525 110 or email Barbaraat barbara@hospicesofhope.co.uk

Update from S.C.A.R Stoma Care and Recovery...plus an appeal from Hospices of Hope

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

FOR MORE INFORMATION Call our freephone number 0800 592786 Visit www.oakmed.co.uk

Oakmed, delivering peace of mind...

Did you know that Oakmed also provides a free delivery service for ALL your prescription stoma care products?

Delivering your stoma care prescription Delivering peace of mind

Oakmed provides NEWpick up service customised cutting service to cut your bags to the correct size a dedicated customer care team free disposal bags free disposal wipes discreet unbranded delivery

Oakmed discreetly and quietly works behind the scenes to deliver stoma care products nationwide

Let us take the strain out of your ordering by simply calling 0800 592786 or downloading a registration form visitingwww.oakmed.co.uk

Giving you more choice.

H E A LT H S T O M A C A R E M A N A G E M E N T

What is convexity?The term convexity, or a convexpouch, refers to pouches that have abaseplate (flange) that curves orbulges outwards rather than being flatas on a standard pouch. All theleading stoma manufacturers producea convex version of both theirdrainable/closed and 1piece/2piecepouches, although they can vary in thestrength or firmness and the depth ofthe convexity.

Why would I useconvexity?Convex products are recommendedfor use by stoma care nurses usuallyin response to difficulties such asstomas under skin folds, in dips, skincreases and retraction.

These difficulties can often lead to anunstable appliance, leakage and theassociated sore skin.

The convex base plate has a circular‘hump’ or ridge built into it which,when worn, has the effect of putting aring of gentle pressure on the skinaround the stoma. Often creases canbe ‘ironed out’ and dips can be filledwith a convex baseplate, thusincreasing security and preventingleakage. Stomas that are mildlyretracted can be encouraged to

protrude into the pouch, with deeper,firmer convex products being used onstomas that are more severelyretracted. Also, as the convexbaseplate is sturdier than a flatbaseplate, it can hold apart skin foldsto expose the stoma. Sometimes theuse of convexity can mean otheraccessories such as paste or seals thatwere used to achieve a seal are nolonger needed.

What about a belt?All convex pouches are manufacturedwith belt loops. This is to give you theoption of using a belt to increase thesecurity. The belts are elastic with asize adjuster and, as they pull thepouch more firmly in position, theyhave the effect of increasing thefirmness of the convexity. They shouldnot be made too tight and should be

Problematic stomas...ConvexityWritten byMelanie Jerome RGN, Bsc(Hons), CNSChelsea and Westminster HospitalNHS Foundation Trust

comfortable, with two fingers easilyable to be inserted under them.

What can go wrong?There is a risk, when using a convexpouch, of causing bruising around thestoma by the pressure on the area.This risk will increase with the use of abelt, and should be monitored byregular checks by the stoma carenurse. If bruising occurs, loosen thebelt and ask the advice of your stomanurse.

It is important to ensure whenattaching the belt that the hooks arefacing outwards, away from the body.They can cause bruising or traumawhen pushing against the abdominalskin. Similarly, the belt can cause sorechaffed skin over bony prominencessuch as the hips and spine on peoplewho are slim or underweight, so itmight need to be loosened or somesoft material tucked under the belt inthese areas.

Convexity generally should not beused on newly formed stomas as thepressure can delay healing and causetrauma to the mucocutaneousjunction (the suture line where thebowel is attached to the abdominalskin). Occasionally, when there arereal problems with leakage in theearly post-operative days, a gentleconvexity can be used, but only withclose monitoring by the stoma carenurse.

Which convexity should I use?This obviously depends on why it isneeded. Sometimes a gentle convexityis all that is needed whereas in casesof severe retraction, a deeper, strongerconvexity will be required. The choiceshould be guided by your stoma carenurse, with perhaps several typesbeing sampled before making adecision. The belt also requires sometrial and error. Some people choose toonly wear it at times when increased

security is needed such as over nightor when going out and then take it offwhen relaxing at home. For others,the belt is an essential part of usingthe convexity or you might find it isnot necessary.

Convexity is often offered withdifferent sizes of ‘plateau’ or theraised area. It is generally felt that itworks more effectively when theconvexity is quite snug to the stoma.I.e. using a convex pouch with a largeplateau on a small stoma wouldn’t bevery effective as the pressure is furtheraway from where it is needed.

In conclusion:A convex baseplate certainly is veryeffective for many who haveexperienced problems with leakagefor a variety of reasons. It should,however, always be introduced andregularly monitored by a stoma carenurse.

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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

I was operated on in May 2010 for alarge colorectal cancer. Thanks to thewonderful efforts of theSouthampton Cancer team I have, atthe venerable age of 83, made agood recovery, to the extent that Imanaged to visit a son in Singaporein November last.

I am writing to you to point out thefact, of which I am sure you areaware: Bowel Cancer test kits are notsent out to people over the age of70. In my case, I was fortunately pro-active, and personally applied for thekit. The results were abnormal, andthe rest is history. I think it isimportant for you, through yourpages, to advise your readers, whohave been through the trauma, tospread the word among family andolder friends and acquaintances totake this vital free test.

I have taken part, with my specialist,Alex Mirnezami, in making a shortvideo on Cancer Research UK andYouTube, highlighting his researchinto the problem of returning rectumtumours in some cases, plus theurgent need for early recognition ofColon Cancer.

For more informationwww.cancerscreening.nhs.uk/bowel/

Yours, in grateful thanks for asplendid magazine.M.L. (Mr)

Dear Tidings

Being a new colostomate, I wouldjust like to understand what is thecorrect disposal procedure fornormal closed bags? In public toilets,do females use the sanitary towelbins? Normal paper disposal binsdon't seem appropriate to me.

With normal household disposal, is itbetter to keep bags together or just"dump" as appropriate? Is thereanything on the market to use inbins to mask odour, particularly forthe summer?

Also when in hotels, in the UK orabroad, where there is only a normaldisposal bin in the bathroom, is thisappropriate to use or should youmake the hotel aware? That doesn'tadd to one's enjoyment, but reallyjust want to know the correct thingto do, particularly from a hygienepoint of view? I realise I can ask mystoma nurse too but wondered whatyour advice is.

Thanks in advance.R.T. (Mrs)

Rosemary Replies: Yes, used stomabags may be disposed of in sanitarybins in public toilets and in pedalbins in the bathroom at a hotel.Some people prefer to empty thebag before sealing it inside adisposal bag. However, if you find itimpractical or unacceptable toempty the bag make sure you wrapit up very well. There is no need tomake the hotel aware as staffshould empty these bins daily andhandle and dispose of the contentshygienically as other guests discardbabies’ nappies and sanitaryproducts in this way. There are several dustbindeodorizers on the market e.g.Neutradol, Bin Buddy and Freshbin.These powders, which you sprinkleinside the bin, are available atsupermarkets or on-line.

Dear Friends

Be assured that I read Tidings fromcover to cover and I can relate wellto the contributors’ experiences.

I am a pensioner who experienced abowel resection in 1985 andcolostomy in 1997. I’ve had someserious problems and obstructionsover the years. However, on thewhole I feel better now. I have aninverted stoma which has causedproblems and embarrassment for along time. Recently I was introducedto Cohesive Slims, seals which areplaced on the skin around thestoma, before fitting the bag. Nowwith the Slims I keep my flange onfor four to five days – What ablessing!!

I have a lovely wife who hassympathy and cares for me. She hasreally been good to me over theyears and we both look forward toour golden wedding later this year.The world has changed over the lastfive decades.Again thanks for Tidings and goodwishes for our Association.

YoursW.D.W. (Mr)

Dear Madam

I would like to convey my thanks tothe association for sending me theTidings magazine. My friendcontacted the association in 2009and explained I was due to havesurgery in March this year and youkindly sent a load of information.Unfortunately I was unable to look atthis until after my operation in May.

Thank goodness I did as theinformation contained in themagazines and the free samples thathave come with them have been

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Readers’ writesmarvellous. On reading some of theadverts my friend started calling thesuppliers for various samples and atlong last I am on the way to sortingout exactly what are the correctitems for me. You are never told thatthere are other products you can tryinstead of those given to youfollowing your operation and youseem to go through a long periodwhere soreness sets in and youstruggle to sort yourself out. So myfour copies of Tidings are really wellthumbed!

One of the articles which proved tobe of immense help was by VirginiaIronside in the Spring 2010 issuewhere she mentioned the TrioDiamond sachets. My friendimmediately got in touch withFittleworths (my supplier) and theysent a load of sachets which havebeen very successful at night. Now Ican sleep for over four hours before Ineed to get up. What bliss as I hadbeen struggling to get an hour’ssleep at a time.

Thank you so much for all your helpthis year.

Yours sincerelyA.A.P. (Mrs)

Dear Editor

I have been irrigating since 1987,three months after my operation.This has worked exceptionally wellover the years. I irrigate on alternatedays and I use tap water wherever Iam. My husband and I have travelledabroad extensively, including cruiseships and river boats. It was onlywhen in Syria staying in the backstreets in Damascus, did I think thetap water might have been suspect! Idid get an upset tum!! We enjoylong distance walking, such asWainwright's Coast to Coast walkingWest to East, Offa's Dyke walkingSouth to North and many othersboth in this country and abroad. Theonly thing I have stipulated whentravelling is to have en-suite facilitiesso that irrigating has never beendifficult.

The only ghastly situation, in which Ihave found myself, was in Cairowhen we visited the pyramids. At

that time, while I was still working, Iused the Conceal Plug (excellent)but in my rush to get out to see thepyramids I hadn't really completedmy irrigation properly. While on thecoach I was suddenly in ahorrendous mess! Fortunately wewere cruising with Swan Hellenicand the Cruise Manager whisked meinto an hotel where the others werehaving coffee and ordered abedroom for me - so I was able toshower and wash my clothes. Nomishaps since then thank goodness!!

On a funnier note, we were inPrague on the tram and I washemmed in by four youths. I didn'tthink anything of this until Idiscovered my bumbag had beenopened and they had taken a make-up pouch, which was actually full ofmy (clean) spare colostomy bags etc.We roared with laughter, thinking ofthese youths opening up what theythought to be a wallet full of money!

I'm hoping that your readers mighthelp me - I am intrigued with theirrigation pump and wonder if itmight be of benefit to me. I hesitatebuying this because of the cost ofthe pump. I would like to know if itis bulky to travel with, as these dayswe limit ourselves to one small caseeach plus hand luggage. I would alsolike to hear of the advantage thispump has over the water bag. I findit easy enough to control the speedof the water flow. I rarely havedifficulty hooking it onto something,although my husband has needed tohold the bag for me on rareoccasions.

Yours faithfully,M.K.H. (Mrs)

Rosemary Replies: CA arranged for avolunteer who irrigates using theBraun Irrimatic pump to telephonethis lady and answer her questions.The pump measures 7inches by6inches and is 7inches high and itweighs 2lbs 3oz so it can easily becarried in hand luggage. It is notavailable on prescription and costs£260.64 +VAT.

Dear CA

Thank you for directing me to theGay Ostomates website. I wish I hadfound this site before my operation.Neither the colorectal nurses nor theconsultant surgeon could give meany advice (as a gay man) on how Iwould cope after the surgery.

I had an operation in July 2005 toremove a tumour followed bychemotherapy. Now it has beendiscovered that the cancer hasreturned lower down in the pelvis. Iwas told that there was a strongpossibility that my rectum, prostateand bladder would be removed andI wanted to contact other men whohad gone through a similar situation(i.e. living with two pouches). It didnot matter whether they were gay ornot. I could not find anyone.

The Gay Ostomates site is brilliant.The information is clear and to thepoint. I would recommend it toanyone who is facing an operationwhich means a life with a pouch.You feel that you are not alone andthere is support outside the medicalfraternity.I recommend this site as a source ofinformation and stress that the gayelement is very low key. It is not adating agency just a very friendly site.My partner has found it as useful asmyself. For more information visitwww.gayostomates.org/

Best wishesB

Dear Editor

I have much enjoyed the winteredition of Tidings as I always do.

I was particularly interested in thenew series, beginning with thearticle about Welland’s Free Style Vieflushable pouch. It came on themarket a few months after I acquiredmy colostomy (in 1995). It was thencalled Impact, and made such adifference, not only re flushing, butalso because my original pouch didnot adhere very well to my skin.

I have attended a number ofmeetings with the clinical researchteam in Crawley and have trialled

C H A T B A C K

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Readers’ writesquite a few “prototype” pouches. Ihope that article really will spreadthe word, as I am certain it couldimprove the lives of manycolostomates, who are not yet usinga flushable pouch.

Yours sincerelyM.L. (Mrs)

Dear Tidings

Thank you so much for my regulardeliveries of your magazine which Ifind very informative.

Like some of your readers in thewinter issue I had surgery - anabdomino-perineal resection - toremove a tumour at my anus. Iopted for a permanent stoma as mysurgeon said that doing restructuralsurgery gave me a higher risk of thecancer coming back.

My story is probably one you havealready heard before. At fifty-two Iput my weight gain and worseningconstipation (which I had sufferedfor most of my adult life) down tothe menopause and only went tosee my GP on the insistence of mylovely husband and then it was onlyto “shut him up”. After tests thecancer was diagnosed in January2008 with surgery in March.

My stoma decided not to work forfive days but fortunately, just beforethe surgeons were considering takingme back to theatre, it finally“performed”. The only other problemI suffered was an awful dischargefrom the perineal wound andbecause I’d had radiotherapy beforesurgery it didn’t heal up as it shouldhave done. The wound had to bepacked for the next four months. Thenurses were all very understandingand made what was a difficult timemore bearable.

I’m now coming up to my thirdanniversary since the surgery. I’m fitand well despite a little “glitch” withskin cancer - a basal cell carcinomaremoved in June 2010. I’m able todo 99% of the things I used to do.

I do have a problem now with myweight so your article by SophieMedlin is very helpful. Thanks againfor a great magazine.

Yours sincerelyS.S. (Mrs)

Dear Editor

We all remember the daunting timewhen we first had our colostomy. Mylucky break was living near Reading.I was walking along the road andnoticed the sign ColostomyAssociation. I rang the bell went inand found a whole new world ofsupport including Tidings.

I went to see my GP today (nothingserious) and asked permission to putTidings in with the magazines in thewaiting room. I also told her aboutCA and how much I wished I hadknown about them when I first hadmy colostomy. I said how much CAhad changed my life and wonderedif she could pass on the message toanyone who might be interested.She immediately agreed and saidshe would also e-mail the otherpartners in the practice.

Would it be a good idea for all of usto approach our GPs and ask themto spread the word? Maybe we couldalso put Tidings in the waiting roomat the chemotherapy department.

Best RegardsJ

Rosemary Replies: What a goodidea. Do any other readers putTidings in hospital or surgery waitingrooms? Please write in and let usknow.

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:associate-editor@

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: editor@colostomyassociation.org.ukto organise a PDF to be sent to you.

Readers’PANEL

contributor

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

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

Dear Nurse

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

Stoma Care University Hospital

of North Staffordshire

Q: My husband Richard is amember of your association and hasbeen since he had bowel cancer in2007. Over the last 6 months he hasbeen leaking a smelly liquid from hisback passage and today announcedthat he is loosing blood so theincontinence pants he has used atnight will now be worn in the daytime. He is very calm about this and Iam very worried. He suggests he willgo to the doctor in the week. I wouldbe interested to know what I amlikely to need to know for the future,if you have any past experience withother patients that might help. I amsorry that I do not know his logindetails, but I am of the opinion thathe is not keen to find out although issensible enough to realise things arenot going to get better by themselves.

A: It is not unusual to pass mucousfrom the back passage followingstoma formation. However if thedischarge is offensive or containsblood I would suggest a review by theGP. It may be a simple problem suchas proctitis or inflammation but itdoes need investigating to ensure thecorrect treatment is given, especiallyas the output has changed and ifpads are needing to be worn then itsuggests there is a control issue and alarger amount.

Q: My 84 year old mother has aloop ileostomy, following bowelcancer surgery three months ago.Unfortunately very shortly after thesurgery she developed a hernia atthe stoma site. The consultant wantedto do an immediate reversal due tothe hernia, but the bowel was notsufficiently healed. She is now due tohave the reversal done on 13th

December. In talking to herconsultant I have discovered thatmost of her rectum was removedduring the surgery. In that case is thereversal a good idea? We were toldthat he could not just repair thehernia; consequently he wants to dothe reversal and the herniasimultaneously. What do youanticipate her quality of life will befollowing the surgery? Will she haveenough bowel control? Or will she betied to the house for evermore? Mymother was and indeed still is a veryactive woman and I am concerned

that this reversal could significantlyreduce her quality of life. Are thereany exercises she can do ormedication she can perhaps take toreduce the effects of this procedureperhaps?

A: I do hope that if your mother hasalready undergone the surgery for areversal of her stoma that everythingwent well. Bowel control followingreversal can be very erratic for severalmonths post reversal but usually doessettle with time. I am unaware as tohow much bowel was removed andobviously the shorter the large bowelthe looser the output will be. Thesurgeon would not usually suggest areversal if it were felt there would bea significant control issue afterwards.It is very common to have a shortsegment of the lower bowel removedand the join protected with a loopstoma for a period of time post-operatively. The success rate forreversal and control of the bowelfunction after this is usually good butmay take some time to settle.

Q: I wonder if you can help with alittle problem, since we could not finda related article on the website. Myhusband is a colostomist andalthough the flange and colostomybag fit well around the stoma, hisbag is not releasing gases and getsblown up. He tried to punch a littlehole in the filter to allow the gas topass but that is causing leaks whichnaturally stain his underwear. Is theresomething he can do to work his wayaround this situation? Anysuggestions are welcome.

A: The amount of wind passed isoften related to diet and keeping afood diary for a short period of time isoften useful at identifying the culprits.Once these are identified then adecision can be made to eitherdiscontinue eating the particular foodor to be prepared to manage thewind problem. Some people find theuse of peppermint (tea, mints orcordial), fennel (vegetable, mints ortea) or charcoal (tablets or biscuits)useful in helping to reduce the

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.

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

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

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

amount of wind passed. These areavailable form many health foodstores. Alternatively trying a differentproduct with a different filter systemmay be worth trying.

Q: I have had my colostomy for 19years without encountering any greatproblems but recently I havedeveloped what appears to be anervous rash on my abdomen to theleft of my colostomy but just outsidethe adhesive ring of my colobag. MyGP has prescribed TIMODINE Cream,which I apply twice a day thatsuccessfully keeps it subdued.However if I happen to miss atreatment it quickly flares up, becomesinflamed, very tender and sore.

Have you encountered such a conditionand are you able to suggest how itmight be eliminated? I would greatlylike to be relieved of this problemand would appreciate your help.

A: This is a difficult one, as I haveobviously not seen this rash so it isdifficult to assess the possible cause.The fact that it is away from theadhesive flange of the pouch makesan allergy unlikely. It may be thatregular use with the prescribedTimodine Cream for a short period oftime will clear the rash up completely.However if it does not improve thingsover the time the GP has prescribed itfor it may be worth asking for adermatology review. It may be thatthe rash is nothing to do with thestoma or the products and is adermatological problem which can beinvestigated by a Dermatologist andthen specific treatment prescribed.

Q: I had a colostomy for thetreatment of rectal cancer nearlythree years ago. I have been wellsince and have had no problems withmanaging my stoma, but I do havesevere anal itching, which I find verytroublesome.

I mentioned it to my consultant, buthe did not seem to think it was ofgreat significance. He advised againstanti-itch preparations, but thought abarrier cream such as Sudocremmight help. I have tried this but it hadno effect. The only thing that helpsslightly is Vaseline. I hesitate to raisethe matter, as it seems such a smallproblem compared to the troublesother readers have. I do know howlucky I am and I count my blessingsevery day.

A: This can be a very irritatingproblem and is difficult to manage.There are several creams andointments on the market such asAnusol, which can help. Alternativelythere are many barrier creams,sudocrem being one, which areavailable as nappy rash treatments. Ifyou speak to your stoma care nursethere are also many creams availableon prescription such as Comfeel orOstoguard and she may be able toget some samples for you to try.

Q: I am inquiring about someproblems with discharges from timeto time from the rectum. I have had acolostomy for eleven years. I get acreamy yellowish pasty dischargethat usually carries on for a few days.It doesn’t smell or hurt but it isuncomfortable and I am worried ifsomething is causing this condition tooccur.

A: This sounds like a mucousdischarge from the rectum and is verycommon. Some people never get it,others get it occasionally and a fewsuffer with it on a regular basis. If youhave the sensation that you need toempty your back passage then sittingon the toilet and gently pushing (donot strain) can help to empty therectal stump. Alternatively if it is okaywith the surgeon a GlycerineSuppository gently inserted into therectum can help to empty themucous out.

Q: I have a temporary colostomydue to IBS, having the colostomy hasbeen like having a holiday and I amnow concerned that if or when I amreversed I will continue to have theIBS as bad as before and don’t knowif I can face that. Is this likely?

A: I would suggest a good talk withyour consultant regarding this. No onecan insist you have a reversal but youmust be aware of all the options forboth keeping the colostomy andreversing it and what the outcomescould be. Maybe speak to yoursurgeon and discuss things in detailwith your Stoma Care Nurse, both ofwhom will be more aware of yourindividual situation and can adviseaccordingly.

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:cass@colostomyassociation.org.uk

editor@colostomyassociation.org.uk

Editors Comment

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

When changing your colostomy bagUse a peg to ensure your clothes arefree of the stoma area. Try joining twopegs with a piece of cord long enoughto hang round your neck and clip a pegon each side to secure and support yourclothing in a more balanced way.

Standing upright while applying yourclean bag will help to eliminate foldsand creases and ensure a good seal onflattened skin.

It is not unusual for slight bleeding tooccur where your bowel is stitched tothe skin, so handle your stoma withcare. However, if there is blood comingout from inside the stoma it is importantto seek medical advice.

Try putting your new, clean flange/bagin a warm place e.g. on top of a radiatoror under your arm for a few minutes towarm the adhesive which will help it tostick.

Some people find it easier to positiontheir flange correctly if they stand infront of a mirror.

Stomas can change shape and size,especially in the first few months, socheck weekly for any changes.

Many stomas are not round. Make surethat the flange fits as snugly as possible.If the hole is too big this can lead tosore skin. If it is too small the adhesivewill be up against the side of the stomaand won’t stick, allowing motion tocollect behind the flange and causeleaks.

When measuring your stoma, use thebacking paper of the flange as a pattern.Place it over your stoma then look in amirror to check that it is the right size.

Gentlemen who have hair on theabdomen can shave away the hairaround the stoma. To protect the stomawhilst shaving pop a cardboard tubefrom a used toilet roll over the stoma orcover it with the lid of an aerosol can.

When showering with a colostomy bagstill on, remember to cover the filter soit doesn’t get wet and stop working. Ifyou have problems drying the outside ofthe bag try using a hairdryer, but switchit to the lowest setting so there is no riskof melting the plastic or damaging thestoma.

If you have sensitive skin, before using anew type of appliance always patch testit on a small area - the other side ofyour tummy is best - in case of areaction to the adhesive.

Changing your bag away from homeDon’t forget your spare kit (stoma bag,wipes, scissors, disposal bags etc.) whenyou go out…and remember to renew iton a regular basis.

Many colostomates find it easier tochange their bag in a wheelchair-accessible toilet where there is a washbasin and a bin for disposal on hand.See back page for details of how toobtain a RADAR key which opens lockedtoilets all around the UK.

When you know you will have to usepublic conveniences and there is norunning water, take with you a verysmall “Body Shop” style spray bottlefilled with water. Bacterial hand washthat does not require water is alsouseful. Some stoma appliancecompanies produce sachets of cleansinggel which are available on prescription.

Try flushing the toilet before you use itjust to make sure that it is actuallyworking. There is nothing worse thanfinding out too late that it doesn’t flushat all!

ClothingYou will usually be able to wear thesame clothes as you did before surgery.

Ladies who find wearing normal tightsuncomfortable could try maternity ones.“Hold up” stockings are another optionor “knee highs” if you are wearing along skirt.

Wearing skimpy briefs which finishbelow the stoma or high-waisted pantsthat rest above the bag will prevent thewaistband pressing on the stoma whichmay affect its functioning or lead toleakage.

Several companies make specialistunderwear with an inside pocket whichsupports the stoma bag and keeps itaway from the skin.

If the stoma is on the waistlinegentleman may find using an elasticatedbelt or braces preferable to wearing arigid belt.

High-waisted trousers may be morecomfortable. Details of manufacturersand suppliers can be obtained fromhead office.

Patterned swimwear will camouflageany bulges.

Stoma bag covers, which will help toprevent your bag sticking to your skin in

the heat, are available from somemanufacturers.

Always wear a support garment whenlifting heavy objects. Consult your stomacare nurse for advice on which type ismost suitable for you.

Dealing with:Odour Most stoma appliances have a filterwhich incorporates a deodorizer, soodour shouldn’t be a problem. However,if you are not happy with the filter onthe bag you are currently using there areother bags made by differentmanufacturers that you could try.

Several manufacturers and suppliers ofstoma care appliances produce drops orgranules designed to neutralize anyodour. These can be introduced into aclean bag before you put it on.

Odour could mean leakage or the filtermay have come into contact with thecontents of the bag making thedeodorizer ineffective. If so change yourappliance as soon as possible.

Some ostomates find that drinkingtomato juice or buttermilk or eatingnatural yoghurt or parsley helps tocontrol odour. Others take peppermintcapsules.

WindDrinking peppermint tea or peppermintoil in hot water can help to reducewind.

Eating fennel or drinking fennel tea isanother remedy.

PancakingThis is when the output collects aroundthe stoma and sometimes squeezesbetween the flange and the skin insteadof going into the bag. One of thereasons this happens is because thereisn’t enough air in the bag and so theoutput doesn’t take a downwards turn.

Lubricating your bags with baby oil orone of the many products availablefrom the various supply companies willhelp the motion to fall to the bottom ofthe bag. Squirt a little oil or gel into yourbag and give it a good rub aroundbefore you stick it on. Take care not toget any on the adhesive as this canreduce the effectiveness of the seal.

Covering the filter with one of the stickypatches that are supplied in each box ofstoma bags will prevent a vacuumforming inside the bag.

LeakageAsk your stoma nurse about rings andwashers which can help to give a reallygood seal around the stoma.

Hints andtips for newostomates

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

R E A L L I V E S J O H N ’ S S T O R Y

In 1956 on my four day flight to anRAF station in Penang Malaya Isuccumbed to the runs. Not anunusual experience for nationalservicemen going out east, but minepersisted and I found myself in andout of sickbay and hospitals for thenext six months. After treating me fordysentery I was finally diagnosed withulcerative colitis. I was flown backhome to England and treated at RAFHalton on drugs and a non-roughagediet. Hence I flinch at the thought ofjelly and custard.

After a further six months in RAFHalton, I was invalided out of the AirForce and learned the whereabouts ofevery public toilet within the WoodGreen area, where I lived with myparents. I was very near todehydration a lot of the time. When Ilook back I am amazed at how Imanaged to go to work and be activewith our church youth club. Howresilient we are when we are young.

Finally my condition and my poor dietgot the better of me and I landed upin St. Marks Hospital in London. I wasprivileged to be under the care of MrAvery Jones. He changed my diet and I was built up ready for my ileostomyoperation. On Nov 5th 1959 I stoodthere shaved in the nether regionswatching fireworks out of the hospitalwindow. I was jubilant knowing thatthe next morning I was going to havea new start. Hurrah! To be withoutstomach cramps and the runs and toeat what I wanted. It couldn’t happenquickly enough. Looking back I haveto thank the dedicated staff at St.Marks for without their pioneeringexpertise I would not be alive now.

And so it worked out as they said. Ihad youth on my side and I hadfriends to catch up with. Of coursethere was the small matter of gettingused to the Salts rubber bags. Theserelied on the elasticity of the bagopening as it was pulled over thegrooved rubber flange. Woe betideyou if too much weight filled the bagor you caught it inadvertently whenfooling around. A double-sided Chironplaster stuck the flange on to mystomach with one-inch wide zincoxide plaster strapping to give thefinal touches. A wedge of cotton woolacted as leak protector between my

stoma and the flange and had to bechanged every day. The bag was alsoreplaced in rotation daily by anotherwhich had been washed out and leftin an enamel bucket to soak in bleachto kill the odour. The bag was emptiedthrough a round hole at the bottomwhich had a screw in plug. My sourceof supply was Boots the Chemists.

I was flying solo. At that time therewas very little happening in the way ofspecialist nursing teams who now dosuch a wonderful job. The fact that Iwas young and didn’t want to be seenas different to my friends discouragedany thought of ostomy groups. Inhindsight I can now see that theirsupport and encouragement is a mustfor many. In 1964 I married my lovelywife and moved from London toHampshire where I first becameaware of some of the changes thathad taken place in the types ofappliances. But I doggedly pushed onwith my rubber bags. I was loathe tochange. Then it happened. I was toldthey had stopped doing the flange Iwas using. How thoughtless, howcould they do that to me!

It was a blessing in disguise though asI was forced to take the plunge andstart using a more modern appliance.

Can I really dive into a swimming poolwithout losing my bag? Yes! Wonderof wonders! Do I have to change itevery day? No! How grateful we mustbe.

Although slight of build I have alwaysloved DIY from replacing ceilings toputting in central heating and twoyears ago putting in a new showerunit. Apart from overdoing it a fewtimes I have remained fairly fit withmy stoma behaving well. I amseventy-five in August and still happilymarried with children andgrandchildren. I am also known to fallasleep after lunch. I still clean thebungalow cladding and crawl underthe floors. I must admit that I do itmuch slower now and get a lot ofgrumbling from my musclesafterwards. I also go easier on liftingand wear stoma support wear. Mystoma is not too intrusive and I keepIli happy with a few exercises mostdays. Ili and I have been travellingtogether now for fifty-one years andhe’s been a very good companion tome as he very rarely grumbles out ofturn.

John Belleguelle

Fifty years with a stoma... John takes us back to a time when stoma care was in its infancy and explains hisjourney of some fifty years of ‘living with a stoma’.

I was jubilant knowing that the next morning I was going to have a newstart. Hurrah! To be without stomach cramps and the runs and to eatwhat I wanted. It couldn’t happen quickly enough. Looking back I haveto thank the dedicated staff at St. Marks for without their pioneeringexpertise I would not be alive now.

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The Wessex Stoma Support Group wasbourne from the idea that there was areal need for a local support groupthat would encapsulate all ostomates;be they colostomates, urostomates orileostomates because, prior to 2006,bladders and bowels did not generallymix!

So, early in 2006 the inaugural meetingof the Wessex Stoma Support Grouptook place in the Chalke Valley at FifieldBavant. It was agreed that everythingpossible would be done to help allostomates. Our numbers now total 35members consisting of all three types ofostomate and we want to continue toexpand.

Our members come from as far afield asLymington in Hampshire and Swindon inNorth Wiltshire. We are just approachingour fifth year and once again lookingforward to our annual invite to thedelightful Dairy House at Fifield Bavantoverlooking the picturesque ChalkeValley.

We are represented at Salisbury DistrictHospital’s Stoma Clinic Open Days,which give anyone who has a stomaand would like to meet other ostomatesa chance to talk to us and enjoy anafternoon out.

In 2007, it was decided at our A.G.M.that it was necessary to introduce aMembership Fee and this would be £5to be paid annually and be reviewed atour A.G.M. Since then it has remained at£5 and will be proposed to remain thesame until at least 2011. Fullmembership is open to ostomates, their

families and/or friends and meetings areheld currently at the Bob BlandfordMemorial Hall, Wilton (Wilton ScoutHut).

It is the aim of the Group to give non-medical support and advice toostomates and their families during allstages of ostomy surgery: prior tosurgery, during hospital stays and alsoaftercare. We have trained advisors toprovide non-medical support.

We hold regular meetings approximatelyfour times a year, where we often inviteguest speakers and suppliers to do talksand displays. This is followed by freerefreshments and cakes - many homemade by the ladies in the Group andably served by Ruby and Jean. All thiscomes with a pleasant chat and informalatmosphere. Members also enjoy oursocial side: Barbecue, Christmas Lunch,Afternoon teas and much more.

We have regular fundraising eventsincluding car boot sales but our mainfundraising is done through table salesat various venues. We offer freetransport to Hospital for stays, for visitsto clinics and for visiting relatives if theyhave no other means of transport.

There is a strict code of confidentialityfor all our members. We also produceour own quarterly newsletter withregular input from Salisbury DistrictHospital stoma nurses.

The Group has a fully electedCommittee, which meets on a regularbasis to discuss policy and any othermatters raised by the members duringthe full meetings.

It is the Group’s aim to work closely withSalisbury District Hospital for the benefitof our members or any ostomates whomay show interest in joining the Group.

Our next full meeting is on SaturdayAugust 20th at 2pm, held at the BobBlandford Memorial Hall (Wilton ScoutHut).

If you require further information aboutour forthcoming meetings or any otherinformation about the Wessex StomaSupport Group...

simply contact the Secretary on:01722 741233

or write to:Mr M. A. SlaterThe SecretaryWessex Stoma Support Group55 Wishford RoadWiltonSalisburySP2 0JG

or email:wessexstoma@yahoo.co.uk

or visit:www.wessex-stoma.co.uk

T I D I N G S | S P R I N G 2 0 1 1 | 4 9

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

‘The Group provides non-medical support and advice to ostomates, their families and/orfriends during all stages of ostomy surgery - prior to surgery, during hospital stays andaftercare.’

Michael Slater writes about...the Wessex Stoma Support Groupbased in Salisbury

Members enjoying the summer BBQ in 2010

Members of the Wessex Stoma Support Group Committee meetings are held regularly

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

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

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

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

Stoma support groups in your region...

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

Glasgow:Fittleworth Glasgow Stoma SupportGroupContact: Christine Daalman 0141 6330592 or Charlie Sutherland 01698822075

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

Fife:Fife Ostomy Support GroupContact: Ishbel Barr 01592 772200

England - NorthCheshire: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 311266Maureen 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& HuddersfieldBowel 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 Pete Rennard 01482 793966

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

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

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

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

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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 01279505273 M.E.S.S (Mid Essex Stoma Support)Contact: Paul Foulger 01245 224374Jeanette Johnson 01376 511862N.E.S.S (North Essex Stoma Support)Contact: Mr K Harvey (Chairman)01206 271425Brian Waller (Secretary) 01206 540449Optimistic OstomatesContact: Janet 01702 385510 Angela01702 385509South Essex Young Ostomy GroupContact: Paul Gray 01708 501268STEPS Contact: Jackie Coleman 01268 451937Redbridge Ostomists ClubContact: Stoma Nurses: Chris/Lisa0208 9708321

Hertfordshire:ConnectContact: Lin Hart 01279505273ColoniseContact: Gill 01727 851556

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

Norfolk:Ostomy Friendship & Support GroupContact: 01553 691370StarsContact: Anne Brown 01603 661751

Suffolk:East Suffolk Ostomy GroupContact: Marion Fisher 01473 311204

James 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 02380446779Wessex Urology Support GroupContact: David Morris 02392 361048

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

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

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

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

Oxfordshire:Oxfordshire Ostomy FellowshipContact: Pat Longworth 01235 524163

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

Sussex:(SAS) Brighton & District Stoma Caresupport Contact: Sylvia Bottomley 01273 554407The Ostomy Friends GroupContact: Jane Quigley 01323 417400Ext 4552West Sussex Princess Royal StomaSupport Contact: 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 01392 447374CAT - 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

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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:www.bladderandbowelfoundation.org

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

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

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

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

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

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

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

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

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!

Date: 4th May 2011Venue: Thornton Manor, WirralTime: 9.45am-1pmOrganiser: Hollister

Date: 5th May 2011Venue: National Glass Centre,

SunderlandTime: 10am – 2pmOrganiser: Salts Healthcare

Date: 6th May 2011 Venue: Lord Hill Hotel,

ShrewsburyTime: 12noon – 3pmOrganiser: Shrewsbury and Telford

Hospital

Date: 10th May 2011Venue: Park Hotel, KilmarnockTime: 11am-1pmOrganiser: Hollister and Dansac

Date: 11th May 2011 Venue: Savoy Park Hotel, AyrTime: 10am-12noonOrganiser: Hollister and Dansac

Date: 11th May 2011 Venue: Carlton Park Hotel,

RotherhamTime: 10.30am – 2.30pmOrganiser: Rotherham Hospital

Date: 12th May 2011Venue: The Eden Project, TruroTime: 9.45am-1pmOrganiser: Hollister

Date: 17th May 2011 Venue: West Midland Safari Park,

WorcesterTime: 9.45am-1pmOrganiser: Hollister

Date: 18th May 2011 Venue: Belfast Castle, BelfastTime: 9.45am-1pmOrganiser: Hollister

Date: 1st June 2011 Venue: Palm Court Hotel,

AberdeenTime: 10am-12noonOrganiser: Hollister and Dansac

Date: 7th June 2011 Venue: Heath House,

StaffordshireTime: 9.45 – 1pmOrganiser: Hollister

Date: 9th June 2011 Venue: Hever Castle KentTime: 9.45am-1pmOrganiser: Hollister

Date: 10th June 2011 Venue: Apex Hotel, EdinburghTime: 11am – 3pmOrganiser: Salts Healthcare

Date: 15th June 2011 Venue: North West Castle Hotel,

StranraerTime: 10am-12noonOrganiser: Hollister and Dansac

Date: 16th june 2011 Venue: Station Hotel, DumfriesTime: 10am-12noonOrganiser: Hollister and Dansac

Date: 22nd June 2011 Venue: King’s Hall and Winter

Gardens, IlkleyTime: 10am – 2pmOrganiser: Salts Healthcare

Date: 24th June 2011 Venue: Royal Highland Hotel,

InvernessTime: 11am – 2pmOrganiser: Salts Healthcare

Stoma Care Open Days...Open days give ostomates the opportunity to meet and share experiences withother ostomates. Many people attend with friends and family and they can besociable events. Open days events are posted on the Colostomy Associationwebsite throughout the year...visit: www.colostomyassociation.org.uk

List of forthcoming Open Days:-

C O N N E C T I O N S

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

HOLIDAYS...Beesands near Dartmouth-Devon

Holiday ApartmentSelf-Catering Accommodation(Within fellow colostomates home)• Wonderful Seaviews• Sleeps 2• Beesands, Kingsbridge Devon• From £160 per weekContact Mrs J Seal for more information and abrochure: Tel: 01548 581163Mobile: 07968 370498

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

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