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

welcome to SUMMERA couple of requests...If you can bear to part with your copy ofTidings please consider passing it on toyour local GP surgery, Healthcare centreor local government health and socialcare community outlets (you may haveto become a bit of a detective to findout who and where to take it – let meknow how you get on!). Further copiesof Tidings can be obtained from theEditor.

Also, we are considering a DearSurgeon or Dear Doctor feature similarto Dear Nurse so please write in withyour thoughts or queries. If you are aSurgeon or GP and you are reading this and want to get involved please do get in touch. Here’s how...

Welcome to the summer issue ofTidings...

Summer is here it’s official, the longestday and of course the Tennis! Coverageof Wimbledon is on the gogglebox andwe mustn’t forget the strawberries andcream or the Pimm’s! But where’s theweather to go with it…coming soon, nodoubt! Let’s hope so!

Again kind thanks to everyone who haswritten in, emailed or telephoned theEditor, it’s great to know your thoughtsabout Tidings Magazine – you keep itfresh and relevant so please do keepyour ideas, queries, stories, letterscoming in – you make Tidings what it is– your magazine!

Just between us and by ‘us’ I mean YOUof course! Yes! I’m speaking directly toYOU! The Tidings reader! Yoursubmissions are always eagerlyanticipated, in fact my Editorial teamand I can’t wait to open and read yourletters and emails as they always bringsomething different! But I feel I must letyou into a little secret – each submissiongoes through an editorial process so ifyou don’t see your submission in thisissue of Tidings it’s because it will beheld over for a future issue or is beingreviewed! If you would like tocontribute to Tidings and I wouldwholeheartedly encourage you to doso, but feel you need some help withyour article – either myself or a memberof the Editorial team will be only toohappy to help! As Paul writes in thisissue, ‘if this helps just one person thenI’ll be a very happy man’.

If you are a regular reader of Tidings –and I really hope you are – you willhave read in the last issue of Tidingsthat CA was moving…check out the CANews pages to see pictures of ourGrand Opening! Everyone whoattended the day thoroughly enjoyed it– look out for the celebration cake, it’s abeauty, cut by the Mayor of ReadingCouncillor Jenny Rynn!

This issue of Tidings includes a featurecalled ‘Roadblocks and Assumptions’kindly supplied by the IA (Ileostomy andInternal Pouch Support Group) at thebehest of Sue Hatton Executive Trustee– your feedback would be veryinteresting as always.

This July the CA hosts its Patient OpenDay at the Royal Berkshire ConferenceCentre in Reading, be sure to bookmore details can be found on Page 53or on the CA website:www.colostomyassociation.org.uk. Contact Susan Hale – General Managerto book your place on 0118 939 1537or email:cass@colostomyassociation.org.uk.

Now I want tell you about a new seriesin this issue – ‘Additional OstomyProducts’ – this series of articles willgive a ostomate’s bird’s eye view as towhy each product is a necessaryessential! The idea for the series camefrom your responses to the form ‘Areyou having problems with yourprescription?’ Many of you took thetime to write in and explain what’shappening in your area with yourprescription from your GP surgery,Healthcentre or Pharmacy. Theinformation gained has helped CAobtain a clearer perspective around theUK. There were many references to‘accessories’ and an apparent lack ofknowledge on the GPs part, which hasled to restriction of supplies and insome cases, deletions fromprescriptions altogether. Theses types ofproducts, often considered optionalextras, are in fact, very necessaryessentials for many colostomates andsupport well-being and confidence!!!

On behalf of the Editorial team enjoythis issue of Tidings. I wouldencourage EVERYONE to get involvedwith Tidings...YOU make it what itis...YOUR Magazine!

Email:editor@colostomyassociation.org.uk

PS. For details of how to get in touchwith the Editor of Tidings and theColostomy Association – please turnto Page 6.

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

How to contact the Editor By letter write to:

The EditorColostomy AssociationEnterprise House, 95 London StreetReading RG1 4QA

By telephone: 0118 939 1537

Via e-mail: editor@colostomyassociation.org.uk

or alternatively e-mail: jane.wood@colostomyassociation.org.uk

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

all your regulars

inside..........

storycover

Paul Smith...Real Livesfeatured on page 18

3 WelcomeFrom the Editor

How to get in touch...

About the...Colostomy AssociationEditorial TeamEditorial submissionsAdvertising informationPublication Dates

CA News

From the office

Fundraising

Your donations... stories and fundraisers

Notebook

Helpful organisation

Connections

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

Donation Forms

NEW look donation forms – Help us to help other colostomates

6

8

16

54

55

56

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

...this issue& special features

travel...

Don’t forget yourtravel certificate this Summer...Contact CA office on0118 939 1537 orcass@colostomyassociation.org.uk

support...Support GroupIn conversation with Janice Parkyn...Mid Devon Ostomy Group

Support grouplistings

60

interest...FACEBOOK...Case history

ChatbackReaders’ writes...

CA Open Day...Update on July event

.

50

5161

53

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

12

real lives...Pathways to a ColostomyBobbie’s story...

I’m fine...really?!Sarah writes...

BreakawayUnique children’s charity...

Susan’s storyWhat’s up Doc...

TravelA reader’s reply

10

health...Irrigation and YouSteve writes...

ASCNAll change for SCN’s

AdditionalOstomy Products

Roadblocks andAssumptionsWhat’s it all about...

Travel TipsGoing away checklist...

Dear NurseYour letters and queries

22

26

38

40

30

32

31

44 34

46

Colostomy AssociationPatient Open Day

Saturday 20th July 2013

Royal Berkshire Conference Centre(Madejski Stadium)

ReadingSee Page 53

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

EDITORIAL TEAM

Editor Jane Wood

Executive TrusteeColostomate & Helpline Volunteer Sue Hatton

TrusteeColostomate & Helpline Volunteer Rosemary Brierley

Trustee Colostomate & Helpline Volunteer Jackie Dudley

Trustee Colostomate & Helpline Volunteer Duncan Wells

Trustee Colostomate & VolunteerSarah Squire

Colostomate & Helpline VolunteerGeorgina Williams

Senior AdministratorJo McKenzie

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 issue 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 at300ppi in RGB mode and scanoriginal @100%.

Advertising Enquiries:For a media pack and advertising rates. Contact Jane Wood: 0118 939 1537

Publication:Spring April 2013Summer July 2013Autumn October 2013Winter January 2014

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

How to contact the Editor By letter write to:

The EditorColostomy AssociationEnterprise House, 95 London StreetReading RG1 4QA

By telephone: 0118 939 1537

Via e-mail: editor@colostomyassociation.org.uk

or alternatively e-mail: jane.wood@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

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 AssociationEnterprise House, 95 London StreetReading RG1 4QA

By telephone: General Enquires: 0118 939 1537

Stoma care queries only:Freephone Helpline: 0800 328 4257

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

Find us on FACEBOOK:

Join our ‘closed’ group today...simply put Colostomy Associationinto your FACEBOOK search bar, clickon Group and click on ‘Ask to join’you will be assured of a warmwelcome!

Visit us and register at:www.colostomyassociation.org.uk

The new rings of confi dence

Now you can enjoy even more confi dence and convenience from a pouch seal.

NEW SecuPlast® Aloe Rings not only help prevent leaks, but also contain extracts of Aloe

Vera, to help soothe, moisturise and protect the delicate skin around your stoma.

Quick and easy to apply

Low profi le – only 1.8mm thick

Unique – the only rings to

contain extracts of Aloe Vera

Skin friendly

NEW

For free samples or further information, please call

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

or visit www.salts.co.uk

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

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

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

The Right Worshipfulthe Mayor of ReadingCouncillor Jenny Rynnwith honoured guests,staff and volunteers of the ColostomyAssociation gathered tocelebrate the GrandOpening of the newoffice premises inReading in April...

The CA is delighted to report thesuccess of its Grand Office OpeningEvent in April. The day started wellblue skies and warm breezes. TheRight Worshipful the Mayor of ReadingCouncillor Jenny Rynn along withhonoured guests, staff and volunteersof the Colostomy Association gatheredto celebrate the Grand Opening of thenew office premises in Reading.

Mr. Monty Taylor – Chair of Trusteeswelcomed everyone to the new offices

of the Colostomy Association. Heespecially thanked Councillor JennyRynn for attending saying: ‘how kind itwas of her to take time out of her busyschedule to officiate at thecelebrations’. He also thanked: ‘MrEdward Richardson for his generousdonation of office furniture, which hastransformed the workplaceenvironment for staff and CAvolunteers’. Mr Taylor also thanked the attending stoma carecompanies/suppliers for donationstowards the office move and receptionfurniture. He then introduced TheRight Worshipful the Mayor of ReadingCouncillor Jenny Rynn who made awonderful speech: ‘I am delighted tobe invited here today to open theColostomy Association’s new offices

and to learn more about the supportand reassurance this dedicated charityprovides to colostomates, theirfamilies and carers. Colostomy andstoma care are subjects not openlydiscussed in the public arena – but itis obvious to me that the ColostomyAssociation works hard to raiseawareness and dispel myths thatsurround these subjects, which is bothbrave and heartening’.

Mr Taylor handed over to Mrs JackieDudley – CA Trustee and Volunteerwho had some special words for aparticular guest. Mrs Dudley explained:‘amongst you today is a very speciallady – Mrs Celia Waters. In 2004, thethen Manager of the British ColostomyAssociation (BCA) – Mrs Celia Waters– faced the threat of the charity’sclosure. Macmillan who had supportedthe BCA over many years decided towithdraw its funding due torestructuring – it was Celia’s vision andenthusiasm that prevented the demiseof the charity – that is so successfultoday – now known as the ColostomyAssociation. We owe a great debt ofgratitude to Celia for having the vision,the enthusiasm and the organisationalskills to take a group of keenvolunteers and make them into a teamof Trustees – able to work with herand take the new charity forward.

Celia has since moved on but we allremember and appreciate her

Dear Readers...The Colostomy Association continues to reach out via its trustees, staff,volunteers, support services, Tidings magazine, website and increasingly through its ‘closed’Facebook group...to make a difference to the ‘real life’ experiences of those ‘living with acolostomy’. (Joining the group is easy...put Colostomy Association into your Facebook searchbar, click on Group and click on ‘Ask to join’ where you will be met with a very warmwelcome). The CA office continues its pivotal role – providing information, support andreassurance to colostomates, family members and carers. There are now 115 trained CAvolunteers across the UK. All our volunteers have the skills to chat with new colostomates,attend open days, assist SCNs, listen and support callers on the helpline.

Mrs Celia Waters past manager ofthe British Colostomy Association

L to R: Mr Monty Taylor with the Mayorof Reading Councillor Jenny Rynn

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

National Key Scheme (NKS) Radar Key and optional Photo Identity Card...

Title:

Name:

Address:

Postcode:

Tel:

Email:

Please tick the following as appropriate:

I would like to receive a key for a chargeof £3.50 (including postage and packing).

I would also like to receive an optionalphoto ID card for an additional charge of£6.50 and enclose a passportphotograph.

I attach a copy of my prescription orrecent delivery note as proof of eligibilityand a cheque made payable to‘Colostomy Association’ in the sum of£3.50* key only/£6.50* ID cardonly/£10.00* both the key and ID card(*Please delete)

DECLARATION: I declare that the individualnamed above is chronically sick, has a disablingcondition or has had a bowel or bladderdiversion that necessitates the use of disabledtoilet facilities. The key is for the personal use ofthe above named and their designated carer only.

Plea

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ut a

long

the

dott

ed li

ne a

nd r

etur

n to

the

addr

ess

on th

is fo

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than

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Signature of self or carer: Date: / /2013

To obtain a key or a photo identity card pleasecomplete the form and declaration. Make your chequepayable to the Colostomy Association. Return allrequired items to: Enterprise House, 95 London Street, Reading, Berkshire RG1 4QA

(If you have any queries please contact the admin team at the CA office via the following methods:-Telephone: 0118 939 1537 or Email: cass@colostomyassociation.org.uk)

National Key Scheme - Key and photo ID card purchase

Photo ID Card...The CA photo ID card is provingvery popular as it can be useful ifchallenged when entering orexiting accessible toilet facilities.

If you would like to apply for aPhoto ID card, please completethe form opposite and return itto the CA for processing with thevarious enclosures listed below:-

• A copy of your prescriptionor delivery note as proof of eligibility

• Passport photo x 1• Payment – cheque

Note: Payment can be takenover the telephone if preferred.

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

Please allow 10-14 days fordelivery – thank you

The misuse of any public or private conveniences constitutes an offence. Please note that there are penalties for makingfalse declarations. Key holders’ details are stored in accordance with the Data Protection Act and may be randomly checkedby the Association

#

devotion to the charity and her mostvaluable contribution to forming thenew charity – the ColostomyAssociation’. Mrs Dudley thenpresented a beautiful bouquet offlowers to Mrs Waters who acceptedgraciously. Celia thanked Mrs Dudleysaying: ‘she was delighted to bepresent at the Grand Opening andwished the charity well for the future’. Chairman Mr Monty Taylor then askedeveryone to raise their glasses tocelebrate the opening of the newoffices of the Colostomy Association.There was a break in proceedings anda buffet lunch was served. The newoffices buzzed with conversation.Mr Taylor then invited The RightWorshipful the Mayor of ReadingCouncillor Jenny Rynn to cut thecelebration cake (made by Mrs JoyceRawlinson, Tadley).

CA Website: Our web pages contain alarge range of useful information bothfor new and more establishedostomates and their carers. Pleasenote you can download all ourliterature and factsheets there, as wellas check the details of your nearestsupport group.

Tidings Magazine: CA would like toencourage you to pass on TidingsMagazine and any back copies youmay have to fellow ostomates, to yourlocal GP surgery or Healthcentre forthe benefit of others. We understandmany of you keep each issue forreference – if you can’t bear to passthem on that’s absolutely fine.

The CA’s Purple Iris Award:Encouragingly, we’ve received severalsuggestions for the best UK StomaCare Department or Communitysetting and the nomination processhas now closed. The winner will beannounced in the Autumn issue ofTidings. Thank you to everyone whosent in a form – it’s wonderful to hearhow many patients have receivedexcellent care.

New Support Groups: Another newostomy support group will be startingup in Northallterton shortly calledDales & Vale and if you’re interestedplease contact Carol on 01677988150. We’re always pleased to hearfrom people wishing to set up a newsupport group as we can help bysending a publicity flyer to oursupporters in specific geographical

areas. For further details of supportgroups in your area, please refer to ourwebsite or the support groups listingat the back of this issue of Tidings.

Don’t forget...The CA Open Day 2013:We hope you’ll be able to join us atour Patient Open Day in Reading onSaturday 20 July!

Open Days: Manufacturers andhospitals run patient information daysthroughout the UK and ostomatesbenefit greatly from attending. Theseevents are an ideal opportunity to findabout the latest products or to discussany concerns with the CArepresentative at our stand. Look outfor the details of all open day eventswhich appear on our website or whenthey are issued by post.

Sam has a Stoma: This story colouringbook is an ideal pictorial resource forthose caring for children with a stomato explain what is happening to them(or to depict to a child that a parenthas a stoma). A copy can bedownloaded from our website fromour ‘Young Ostomates’ web page orordered by phone/email from the CAoffice.

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

R E A L L I V E S B O B B I E ’ S S TO R Y

Pathways to a Colostomy...

It was in 1985 while I was living inGermany with my husband, who wasserving in the RAF, and our two girlsthat I was diagnosed with cervicalcancer. I was sent back to the UK for ahysterectomy. Unfortunately the cancerwas at the edge of the removed partand so I had to have radiationtreatment. In those days it was not asrefined as it is nowadays; it basicallyfried my insides and I began to sufferfrom bladder incontinence.

A surgeon recommended a urostomyand this was formed in 1991.Unfortunately the operation damagedmy bowels and caused adhesions.Over the years I had several

operations, but the adhesions stillcaused problems with pain in theabdomen. Then my brother in lawwho is a pharmacist suggested I try anantispasmodic. When I asked my GPhe said, ‘Oh that's a good idea’. And itwas. I no longer had attacks every tendays or so. Instead it would only beonce or twice a year. Much better. Itmade life much more bearable.However, I did suffer with bowelincontinence.

When we moved to Maastricht in TheNetherlands I was sent to see yetanother specialist. Three weeks later Ispent the whole day in the hospitalhaving five different tests. My husband

Bobbie Minshull...shares her story of how she came to haveboth a urostomy and a colostomy. Now, after livingabroad for many years, she is back in the UK and hasbecome a volunteer for the CA and set up a local supportgroup in Northumberland...

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

was there as the Dutch encouragepartners to attend too. I found someof the procedures upsetting but hesupported me throughout. Thesurgeon said he felt I would be acandidate for an artificial sphincter. Hesent us away to research it. We felt thefact that the only surgeon doing thisoperation in The Netherlands was tenminutes from our house was fate. Sowe went for it.

The artificial sphincter involved anoperation to insert a three piecedevice. A cuff went around the anus.This was attached to a reservoir and apump. I then had to pump this tomove silicon fluid from the cuff intothe reservoir, which opened the cuffand allowed the faeces to flow out. Itwas a very uncomfortable operationbut I recovered and life got better. Theartificial sphincter worked reasonablywell, apart from when I had diarrhoea.

A couple of years later due to stenosis(a narrowing of the stoma) myurostomy had to be revised. Theoperation to create a new urostomywent on twice as long as it shouldhave done because of the adhesions.It took me a long time to recover but Idid. However, I suffered with chronicdiarrhoea and it got worse and worse.Finally it became intolerable and I wasfeeling at rock bottom. I went to myGP and asked for a colostomy. I justcouldn't bear living with theincontinence any more. I was going tothe toilet fifteen times a day and myanal skin was so sore I couldn't wipe it.

Despite being nervous of how long itwould take me to recover fromanother operation, I went to theoperating table with hope that my lifewould be better. When I woke up inthe recovery room I felt incredibly alertand phoned my husband. He askedwhy the op hadn't been done - it hadonly been an hour since he left me togo down to theatre. ‘It has,’ I said. ‘Ihave a new stoma but no scar. Comeand see me.’ I could talk to myhusband and felt fine. I even had asandwich for my tea! Two days later Iwas home.

However, I started to get very tired. Iwent to see the hospital stoma nurseand told her I had a lot of output andit was totally liquid. She said to usethickening sachets in the bag. Thenone day I felt terrible. I could hardlythink and my urostomy stoppedworking even though I knew I haddrunk a lot. My husband dragged meto the hospital. After numerous tests,

including a camera pill, they came tothe conclusion that I only had 1.2metres of small bowel left. I was notabsorbing nutrients from food, whichwas why I was so tired.

They tried all sorts of things to helpme. Then I was referred to a specialist,newly arrived at the hospital. He sawme every six weeks and together weworked on getting my body working.We got on so well that one day heasked if I would talk in front of ameeting of 34 gastroenterologists, thenext day. When I said I couldn't makethe morning he moved the schedulearound so that I could do it in theafternoon! I was already a volunteerfor the students in the teachinguniversity so I had got used to talkingabout my stomas to students in Dutch.(We learnt Dutch when we went toThe Netherlands and it was one of theproudest days of my life when Ipassed GCSE with an A*). Eventuallythe specialist managed to get myoutput down, from the 3700mlsmeasured in hospital, to around1500mls. It meant a very expensiveinjection every month and loads oftablets.

As my husband was due to retire after38 years of RAF service, we thenreturned to the UK. We movedreasonable close to our youngestdaughter so we could be involved inour granddaughter's life, and baby sittwo days every fortnight.I also wanted to do something to helpothers with stomas and became avolunteer for the CA. What I liked mostabout the training was being in aroom with other people with stomas,something I had never experiencedbefore.

I decided to try to start a supportgroup locally, because there wasnothing between Edinburgh andNewcastle. I got in touch with acommunity stoma care nurse forNorthumberland and she agreed tosupport me. I contacted all the stomaassociations and asked them to dropflyers to anyone with relevantpostcodes. The local hospice agreed tohire me the room for a couple ofhours. The stoma nurse laminated lotsof posters and I put these up in GPsurgeries, pharmacies, libraries, postoffices and supermarkets. I alsoemailed the local paper to ask if theywould be willing to publish a letterabout the group and they offered todo a piece on it. They came to myhouse and did an interview whichtook up a half page spread that week.

Several of the ladies I play golf withcommented on it being a very goodarticle. I had never hidden my stomasfrom them and they have been verysupportive.

A couple of weeks before the meetingthe hospice told me they would notbe charging rent for the room at first,which was wonderful. The stomanurse and a representative from astoma company subsidized the teaand biscuits so I just had to buy theraffle prizes. Come the evening of thefirst meeting as I set up all the CAleaflets and teas, I wondered howmany people would come. Six oreight, maybe.

My wonderful husband hugged meand told me how proud he was of meand then they started to come throughthe door, and they just kept oncoming. I welcomed 26 people thatevening, all local and all grateful forsomeone starting up a group. Thenoise of people talking about stomasspread throughout the room for twohours. It was a wonderful chaos. Iasked people to leave their phonenumbers purely in case I ever had tocancel the meeting and I asked ifanyone would consider helping. Thestoma nurse, my husband and I wentfrom person to person and hopefullybetween us we managed to help andencourage everyone. I told theattendees that the hospice wasdonating the room free and asked ifthey felt able to donate a bit in theircharity box as I felt it was only fair. Themorning afterwards I was still on ahigh and got two phone calls thankingme for organizing the group.

And so that's where I am now. My firstmeeting under my belt and reallyfeeling I might be helping people,hopefully they even may be able tomiss out some of the steps I havetaken over the years. I am happy withmy stomas, I enjoy being a volunteerand I still have my wonderful husbandstanding by my side. What more can agirl ask for?

Bobbie Minshull

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

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

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

Update on stoma care products and services

Na `Scent Ostomy OdourEliminator – the new standard inodour eliminator. For use incolostomy, Ileostomy and urostomypouches. Available now in the UKfrom Bullen Healthcare.

“It’s amazing how much confidencethis gives you when you are out andabout and having to use public toiletfacilities, it takes the paranoia awaycompletely as I can empty my bagand leave the bathroom odour freefor others to use,” Annette Keenan,Ostomate and Senior Sales Manager,Vanilla Blush.

It is not simply a deodorant it actuallyeliminates the odour by creating anoxygen rich environment that’s killsodour causing microbes in the pouch.Na Scent can give you the freedomand peace of mind you need toconfidently go about your day to daylife without those worries or stressesslowing you down or feeling a burdenon your daily choices.

For further information orsamples call our CustomerService Team on Freephone0800 888 501 or alternativelyvisit us at www.bullens.com

Na `Scent OstomyOdour Eliminator

New Soft Convexity ExtraLarge Size Pouches...nowavailable from PeakMedical

Peak Medical Ltd,exclusive UKdistributor of theEuroTec range ofostomy productsand accessories ispleased toannounce thearrival of theirextra large size softconvexity pouches.

Now available on NHS prescription ina closed and drainable pouch in a cutto fit option: 13-54mm.

Designed with the wearer in mind, theintegral, soft, flexible inserts providethe optimum depth and profile tomanage most problematic stomaswithout the discomfort and rigidity

associated withtraditional convexbarriers.

Made from atraditional skinfriendly 0.9mmthick hydrocolloidadhesive, thebarrier is backedwith a protective layerof SuperFlex stretchablefoam for noticeablecomfort and flexibility.

NEW products fromOstoMART and HiLINEavailable on Drug TariffNOW

Following thesuccess ofOstoZYMEOdourNeutralisingPouchLubricatingGel, we havenow launcheda new 90

sachet size pack to complement theexisting 30 sachet size. OstoZYMElubricates the inner surface of yourstoma pouch encouraging waste toslide to the bottom of the pouch toprevent pancaking whilst at the sameneutralising pouch odour.

OstoZYME is the original pouchlubricating deodorant.

For further information aboutOstoZYME, see our main

advertisement on the outside backcover of this publication.

Our sistercompany HiLINEis pleased toannounce thatthe popular Res1Cotton, Res1Satin and Res2Lace range ofostomy pantiebrief hernia support garments are nowavailable in a choice of Black as wellas White. Both colours are availableon prescription and in sizes 8-30.

For a FREE sample of OstoZYMEOdour Neutralising PouchLubricating Gel or furtherinformation about the completerange of HiLINE PrescriptionSupport Garments, please callfreephone 0800 220 300, emailus at enquiries@ostomart.co.ukor visit our websitewww.ostomart.co.uk

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

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...

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

Donations

When sending your dona-

tion/s please mark your

letter/cheque with Tid-

ings Issue 30....

Thank you!

Dear TidingsOur local pub, which was in sharp and almost terminal decline, wastaken over by new landlords about sixmonths ago and is, once again,thriving as a community pub. One of the projects to improvebusiness was to instigate a charity quizon the last Tuesday each month, thefirst of which was in April. It wasannounced that the winning teameach month would then nominatetheir chosen charity for the followingmonth’s competition. I am delightedto say that the Colostomy Associationwas the recipient of the May proceeds.Please accept our winnings £120 as adonation, which we know, will be putto a good use.

D&S.P

GirlguidingNorthamptonshire Corby & RockinghamForest Trefoil Guild

Please accept our donation of £100from the Corby & Rockingham ForestTrefoil Guild, based in Corby,Northamptonshire. We held a smallCoffee Morning stating that theproceeds were for your Associationand were pleased with the response.The work that you do is very muchappreciated. Thank you.

G.S.GSecretary

Dear CAPlease accept a donation of £200,from the Wall Village Lunch Club!

R.T

Dear Colostomy AssociationRecently, I very happily celebrated my70th birthday having had bowelcancer and a difficult time in hospital5 years ago. I asked family and friendsto make a donation to CA, in lieu ofpresents. Please accept this donationof £200 for all the good work you do.With best wishes,

M.F

Dear ColostomyAssociationPlease find theenclosed mydonation of£447.30. I raisedthese funds in Aprilthis year to celebrateWinnie’s 1st Birthday. In April 2012, Ihad an operation for bowel cancer,which was very successful – I receiveda colostomy. To help me recuperateafter the operation, I held acompetition to name my stoma. Iraised £194 for the stoma nurses atLincoln County Hospital. My stoma’sname – Winnie after Winnie the Pooh!

I have now made a full recovery andalthough I sometimes get upset withWinnie, I have come to terms with mystoma. That being said I decided that Iwould raise money on the anniversaryof my operation by getting together allmy relatives and friends. I booked thelocal Scout HQ (I have been a Scouterfor 32 years!) and held a coffeeafternoon with cakes, a raffle and aBring and Buy stall. Everyone had agreat time celebrating Winnie'sbirthday and raising money for the CA!

Thank you so much for the Tidingsmagazine you send out, it has been agodsend! I have had so much helpfrom reading all the articles andstories from the people who have hadthe same operation as me.

Keep up the good work!

C.B

Guernsey Flowers Limited isbased in the Channel Islands ofGuernsey and have been involvedin the Flowers by Post Businessfor many years. Guernsey FlowersLimited manage thewww.charityflowers.co.ukweb site and call centre andprovide and pack the flowers fromtheir purpose built premises.

By choosing to purchase yourflowers via the websitewww.charityflowers.co.uk you willbe giving more than just beautifulflowers. You will be helping theColostomy Association, as 15% of the retail price ofeach order goes to the charity. Please quote ‘COL’ on all orders.

Send for your FREE cataloguetoday or visit:www.charityflowers.co.uk or simply telephone:0870 5300600

Don’t forget...

Thank youeveryone

for your kinddonations

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

Mr K Omar £ 279.00Mrs H Vickers £ 139.50Mrs A Wilson £ 55.80Mr R Walker £ 55.80Mrs J Weiner £ 55.80Mr R G Jones £ 27.90Mr T Woodhouse £ 27.90Mr T Middleton £ 27.90Mr P Walsh £ 13.95Mrs Y Vickers £ 13.95Anonymous £ 13.95

Note: The following winners do-nated back to the CA...this ismuch appreciated – many thanks

Mr Omar: Donated £50 to CA

Mr Vickers: Donated £10 to CA

Ms Weiner: Donated draw prize back to CA

Mr Walsh: Donated draw prize back to CA

500 Club...March 2013 Draw Winners!

Volunteer’s TandemParachute Jump raisesmuch needed funds for the CA!

I am delighted to say that funds frommy Tandem Parachute Jump amount toover £747 so far. I like to think of youall at CA as a part of my family, and Iknow from chatting with otherostomates – the work you do – reallydoes make a difference! As I have saidbefore, I know you will put these fundsto good use, and I will now try andthink up a fund raising scheme for nextyear. You really do to make living witha colostomy so much easier.

M.R

From Ed: If you have any fundraisingideas or suggestions please sendthem in! Contact the Editor via:0118 918 0500 or by email:editor@colostomyassociation.org.uk

In Memory - Apology: Mr P T Fitzgerald funds listed in theSpring Issue of Tidings were incorrect.(The Editor has relisted the correctfunds above). Our sincere anddeepest apologies go to Mrs JennyFitzgerald (Pat's wife) for the printerror. The total donations made to CAin Pat's name were £303.76 not the£60.00 listed in the magazine.

Mr Pat Fitzgerald £ 303.76 Mr H F Sheppard £ 271.47 Mrs C Palmer £ 529.00Mr S Heginbotham £ 500.00

Thank you

In Memory

Mr A Conn £25,662.00

Thank you

Legacies...

For your FREEdonation boxsimply contactthe office –telephone: 0118 939 1537or email: cass@colosto-myassociation.org.uk to order yours today!

Help CA raisefunds...

Ian completed the Virgin LondonTriathlon, last september. The evententailed a 750m swim in thedocklands, 20km cycle ridefinishing with a 5km run aroundthe Excel Centre – no mean feat.

Ian raised£1,110.00 for theColostomyAssociation whichis fantastic! Hesays: “I chose thischarity becausemy mum's cancerreappeared whichresulted in twomajor operations.The secondoperation was anemergency one,that had somecomplications andas a result my mum now has acolostomy.

It's not easy accepting and livingwith a colostomy, especially whenits not widely known about,however my mum has proved yetagain that her strength andpositivity has meant she can live a normal life.

Mum is a major inspiration andstrength to the Scott family and toher friends and has receivedinvaluable information from theAssociation. I know my family andparticularly my mother would liketo thank everyone involved in theorganisation, it offers a majorlifeline to so many”.

Total raised: £1,110.00Gift Aid: £257.50

Virgin London Triathlon fundraiser...

Recycling Appeal is a multi-producttechnology appeal...raise funds for CA.

Freepost envelopes are available or collectionscan be organised simply call: 08450 75 58 82 or

08451 30 20 10

Don’t forget our

Recycling

Appeal...Unused andUn-pulled inkcartridges Mobile Phones

Laptops DVD DS/Wii gamesconsoles

DS/Wii games Cameras

What can be recycled?

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

In October 2010, I was admitted tohospital with uncontrollable bowelproblems. I couldn't walk for morethan 10 yards with out the inevitablehappening. I stayed in hospital forthree weeks I was given all sorts ofinjections and intravenous drips to tryto stem the flow. (The long and shortof this experience – the ward I was on– was shutting down due to cuts). Iwas discharged and advised that I wasfine and progressing well, I disagreedso far as to say, the week post mydischarge, I found myself having lost astone in weight and writhing in agonyfor prolonged periods during the day.At this point I was very weak andcould not bring myself to eat, my wifewas hand feeding me. I had takenenough, and contacted the surgeonwho had performed an exploratorysigmoidoscopy (bearing in mind shehad advised at that point the bad stateof my colon). I advised that if I wasnot attended to I felt I wouldn't lastmuch longer, my voice failing and allmy bodily functions seemed like theywere shutting down.

My wife rushed me to the hospitalwhere my consultant advised, ‘you’re apoorly man and we’ve neglected theissue.’ They did the usual tests andsent me to a ward to wait for theambulance. I waited for a few hours’all the while losing blood and bodilyfluids. I was taken to The RoyalOldham hospital under the care of MrRate and his staff. I was advised I wastoo poorly to operate on and I needed4 pints of blood and 3000 calories ofprotein. I was told that I may not bestrong enough for the operation but ifI waited I may not last the weekend,the choice was mine. What choice?? Idug deep and did as asked albeitunpleasant all the while thinking – isthis my last stand? With my familyaround me in tears, the last memory

A tough ride...home to family and friends...my business...andcycling for the CA?

Paul Smith tells us hisstory...back to good health andexplains why he came to takethe ride of his life across the‘Way of the Roses –a spectacular ‘coast to coast’cycle route from MorecambeBay (the Irish Sea) toBridlington Bay, on the NorthSea coast, with fellow workcolleagues...

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

Total raised: £1,028.13Gift Aid: £237.50

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

before the op was my daughterscreaming "daddy” (very gutwrenching) but I assured them all Iwould be OK. But inside I wasn't toosure.

I awoke from the operation to find thesurgeon and staff around me advisingthat my full colon had collapsed asthey had begun the surgery, I was inagony with a strange feeling on mysides I had a ileostomy bag on oneside and a drain pouch opposite, myfinely tuned torso ruined but hey I’malive! The three months ahead weredifficult, coming to terms with thistrauma and life changing event,leaking pouches in meetings orwherever, often six times in a day, abusiness to run. How was I going tocope? Some days low some not so.

But onwards and upwards as ‘they’say! I had my family…friends andcolleagues who all played a very bigpart in my recovery – not forgettingmyself of course and my positivemental attitude (PMA), this blowwasn’t going to stop me, No Way! Thefirst question I asked at my threemonth review…When can I go back tothe gym? After listening to some verysensible advice from my stoma carenurse, I did go back to the gym – back

to building up my fitness, playing 5aside football again (and holidays).The second question…how do I wearmy shorts so high to cover my bag? Ididn’t. I just folded down the topsection of the bag, taped it down –now I was ‘normal’ – I wore a belt tosupport the bag so it didn't readilypeel off, not always successful but inthe main I managed! I carried on likethis for just over two years, no painjust the inconvenience. A small priceto pay looking back.

After my third operation my bag hasnow been removed and I have aJ-pouch. This was done seven monthsago and I must admit it’s been aheady climb. (Difficult to have to visitthe loo between 8 and 18 times aday). To this day quite severe but bepositive – it will improve – I keepsaying!

I took a lot from Tidings – advice andtips, all of which were good, readingother people’s stories is humbling tosay the least. I wanted to help CA so Igave myself a target, something Iwanted to achieve personally. Myaccountant suggested a cycling trip –I thought it a great call! I begantraining with him. He was tough withme and trained me long and hard.

I was ready after six weeks to achievemy aim. The ‘Way of the Roses’ –Coast to Coast – was my goal! Cycling170 miles in three days with two of myemployees with my co-director in theback up vehicle . We all succeededalthough it was a tough ride – weexperienced all four weather seasonsduring our three day ride! My companyemployees were so supportive; aswere clients and friends – all whoknew me – gave to the cause.Humbling and grateful that we coulddo the trip for such a worthy charity.

If anyone finds themselves in similarcircumstances to myself – try to keeppositive – all things are possible. Ihave succeeded in carrying on with mybusiness along with my co-directorand staff of over 20 people whoembraced my situation. I play football,go to the gym, have a drink with thelads and enjoy the other things lifebrings – like cycling the Coast toCoast! Having a stoma may seem likean uphill struggle at first butremember my mantra PMA – positivemental attitude! I’m here telling mystory and if this helps just one personI'll be a very happy man.

Paul

‘I was ready after sixweeks to achieve my aim.The ‘Way of the Roses’ –Coast to Coast – was mygoal! Cycling 170 miles in three days with two of my employees with my co-director in the back up vehicle’.

Day 1: Was a cold start fromMorecambe sea front through toLancaster which was very flat and easy,as the day went on we cycled throughThe Trough of Bowland andpicturesque villages and country roadsuntil we reached Settle where we hada break for half hour. Straight back intothe saddles we then had a very difficultclimb to the top of the hills out ofSettle into open countryside towardsMalham. The scenery was breathtakingand the weather was glorious. Theopen country roads here were quietand a pleasure to cycle on especiallyhaving just had a tortuous climb

towards the end of day one. We finally got into Grassington midafternoon.

Day 2: Saw us starting out inGrassington and within 2 miles wewere heading for the most difficult partof the journey, the weather wasfreezing and we were hit withhailstorms and heavy rain, thishowever didn't dampen our spirit.

We cycled through Burnsall heading upthe hills towards the notorious climbto Pateley Bridge, a winding steepsteady climb for circa 4 miles to be

Way of the Roses...riding out to Bridlington!

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

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

If you are having a fundraiser for the Colostomy Associationwrite in and tell us about it...you could be featured here!

welcomed at the top with a very steepand tricky descent. The weather wasagainst us here and we had to ridewith caution on the downhill as theroads were both slippy and very steepwith tight bends. There are warningsigns here to be ultra cautious. We gotinto the village of Pately bridge to findyet more climbs to get to our nextpoint, Fountain Abbey – a lovely villagewhere we grabbed a cup of tea beforestopping at the Abbey to take a fewpictures and have a closer look. Werode through the national park on to

Ripon and through the centre, acouple of quick snaps at the cathedral,sheltered from the hailstorm beforeour last jaunt towards York, where wearrived mid afternoon.

Day 3: What should have been theeasiest day of the 3, relatively straightforward with only a minor 200m climbover a 10 mile stretch. The weatherwas atrocious, heavy rain and howlingwinds in our faces. Getting out of Yorkwasn't the easiest, having to takedetours and getting lost for around anhour didn't bode well for an easy lastday. The rain subsided but the windnever let up. The route was quite flat,cycling on minor roads and cuttingthrough a field for a mile or so wasmore akin to a mountain biking.Eventually we reached Driffield wherewe had a welcome cup of tea. Out ofDriffield, again we found ourselves inthe wrong direction but at least therain had let up but not the wind. Itseemed as though every direction wetook the wind was in our faces. Wecycled hard with no respite for 6.5hours to reach our final destination,

Bridlington. A sense of achievement.Six months ago I had my reversal tonow riding nearly 200 miles across thecountry.

The ride was not easy and you have tohave a base of fitness for sure. I wouldlike to thank:- Kirk Lusty and AdrianRadcliffe who cycled with me. Thecamaraderie was great, each one of uskept the others pushing on. Jeff mybusiness partner for being with us allthe way with the supplies and sparesin the crew van. His contribution wasinvaluable. My wife and family whosupported me through the years That Ihad suffered with a terrible illness. Myfriends who supported me throughout,and not least business colleagues.

Mission accomplished...Three days ofcycling across the country – 191 milesin total encompassing a few smalldetours and a couple lost on tour!!! All went well, no accidents or nearmisses. All three of us did really well,each day had its own degree ofdifficulty.

A special thank you to all those whosponsored myself, Adrian and Kirk forthis worthwhile cause and for otherswho are and have suffered with thislife changing illness.

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I R R I G AT I O N C O L O S TO M AT E S E X P E R I E N C E S

Irrigation and you...

Steve writes...I am not medicallyqualified and only offer this as a guideto my technique.

I’m going to attempt to explain myprocedure for irrigation. Don’t forget,we are all different and what works forme may not work for you.

Firstly, you must get permission andtraining from your stoma care nurse. Ihave an end colostomy but I don’tknow how much has been removed.As I understand it, the greater amountof colon that remains, the easierirrigation becomes but I believepeople successfully irrigate with adescending colostomy, so don’t be putoff, persevering and honing yourtechnique. One day it will suddenlycome together and work for you.

Before I start, I make sure I'm wellhydrated. As a general rule, I try todrink about 2 litres of water a day tokeep everything working right. Thecolon absorbs water back into thebody so, if I am dehydrated, the waterthat goes in doesn't come out.

To begin, I remove my bag and attacha sleeve. I then fill the water bag to thecorrect level and temperature, asdetailed below, attach the cone andhang it up above shoulder height. Ihave a folding chair from Asda(currently £7 at March 2013), which Iplace close to the WC so my sleeve

will hang into the bowl. A useful touchto my chair is the cup holder. This isuseful for putting wipes, peg, spray inwhile you are virtually immobileduring the procedure.

The first consideration for a successfulirrigation is water temperature. I'vebeen through the temperature rangesfrom 34/35 deg up to above 40 deg.I've found my greatest success is astarting temperature indicated on thebag of 39/40 deg. Obviously, as theprocedure progresses, the temperaturedrops and I often complete my lastinfusion at about 35/36 deg. If thewater is too cool, the colon can spasm.If too hot, you risk hurting yourself anddamaging the equipment.

Infusion volume: I fill the bag to 2litres. I then infuse about 500ml at atime, with the flow indicator wheeljust turning above dead slow/stop. Ittakes about 3 minutes to infuse500ml. If there is trouble 'turning thewheel,' it is because my bowel is notrelaxed enough. I take a very deepbreath in, which normally starts thewheel turning, and exhale slowly,allowing my abdomen to 'flop' at thesame time so I end up flopped back inthe chair. This relaxation generallykeeps the flow going.

Output: Eventually, I get anuncomfortable feeling of fullness andwater tries to escape past the cone. At

this point, I enter 'extreme relaxation'mode in an attempt to relive the waterpressure. After a couple of seconds Iremove the cone and start reading mybook. By this time the wench hasdelivered the cup of tea! A fewseconds later, I get a gush that issometimes clear, sometimes mixedwith formed matter. I carry on readingand after about 5/10/15 minutes, I getanother long, sustained gush that isusually made up of looser matter,having been mixed with the infusedwater. After about another 5 minutes, Irepeat the infusion process again, andat the end of the cycle, for a third time.By now I have infused about 1500mltotal in 3 lots of 500ml.

Clearing up: After I've had no outputfor about 10/15 minutes after the lastsecondary burst, I remove the sleeveand clean all the equipment, hangingit all to dry. This is the risky bit becauseat this point, 'Fred' is au naturel.Assuming no 'inconvenientafterthought,' it's into a nice hotshower, slowly reducing thetemperature until it's a nice coldshower!! After that, out, dry, smelliesand bag. The whole procedure takesme between an hour and 90 minutes,depending on my motivation. I havecut corners and done it in about 40minutes, with success, but I've alwayshad the nagging doubt ofincompleteness in my mind.

Sue Hatton Executive Trustee writes…I hope you will enjoy Steve Clark’sarticle on how he irrigates. As he says in his introduction, everyone does itdifferently. It is true, there are no hard and fast rules. It is alwaysinteresting to read how other people manage this method of clearing outtheir bowel and some of their own idiosyncratic techniques arefascinating. I am always surprised at the length of time it takes somepeople to irrigate. I was able to do the whole process in 20mins and did itdaily. I have now had to have surgery to become an ileostomist, so I donot have the luxury of being able to irrigate – I don’t think about itanymore, you just have to get on with life! Steve, I believe takes quite awhile to complete the whole process, but obviously enjoys having thattime to sort himself out. Please let me know your methods and what youthink about Steve’s article...

Colostomy Irrigation - One way of doing it...

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

Conclusions: The major barrier tosuccessful irrigation I believe isrelaxing. Relaxation is crucial tosuccessful irrigation, in my opinion. I take a very deep breath whichgenerally sets the wheel spinning. Thedifficult thing is relaxing the abdomenas I exhale. Sometimes, I can feel thetightness still. I found that by'slumping' my abdomen, it seems torelax me. It's one of those things thatyou will know exactly the sensationsand feelings when you do get it rightand, after practice, will repeat againand again without problems.

I've tried various changes to routineand found that what I have detailedabove works FOR ME. Don't forget, we

are all different and special in our ownway. Please feel free to pull my ideasto bits and debate them.

There are many manufacturerssupplying equipment for irrigationbut this is the equipment I use:

• Dansac Irri-drain adhesive (box of 20) Item Code: 950-35

• Coloplast Irrigator BagItem Code: 1511

• Colotip Item Code: 1110

Thanks to Sarah, Shirley and Duncanfor their assistance in correcting this.Any errors that remain are mine.

Steve

Why opt for Colostomy Irrigation?Irrigation can give the colostomate anew sense of freedom and control.In general, irrigation is a safe andeffective method for achieving acontinent bowel. It is not a technique,which suits everybody, although forcolostomates who suffer persistentproblems with their colostomy it maybe an appropriate option. Patientssuitable for irrigation are identified bytheir stoma care nurse. She/he willdiscuss irrigation to find out if thepatient is happy to try it. If all is wellthe stoma care nurse will teach themthe procedure which should adheredto at all times. Patients who aresuitable for irrigation should have aleft-sided colostomy either in thedescending or sigmoid colon, with anoutput of formed faeces.

What is Colostomy Irrigation?Colostomy Irrigation is used tomanage faecal output by cleansing thebowel; irrigation does not wash outthe entire bowel but clears the lower(distal) colon of faeces - this enablesthe bowel to perform the functionnormally performed by the rectum ofstoring faeces until they are evacuated.

What type of equipment is needed? Irrigation involves the use of specialistequipment, referred to as Irrigationsets. Sets include a graduated waterbag, tubing with regulating clamp,cone tip and sleeve.

The Colostomy Irrigation procedureA colostomate who regularly irrigateswill gain an understanding of theirbody and overtime will identify thebest time of day to irrigate - a time

that suits them and fits in with theirlifestyle. Organisation at the outset ofthe irrigation procedure is key tokeeping relaxed and in control.

Gather together the items neededprior to irrigating:-

• irrigation set (see pic) • tissues/wipes• bowl of warm water• 1 litre of tepid tap water (36-38°C)• a non-sterile measuring jug• stoma pouch or cap • clothes peg• disposal bag

To start the procedure make sure theenvironment e.g. bathroom/toilet iswarm, comfortable and private. Layoutyour items and wash and dry yourhands, ensure everything is withinreach. Fill the jug with approx. 500mltepid tap water 36-38°C (bodytemperature is 37°C) pour into thegraduated water bag. The bag shouldbe hung on a hook preferably behindthe toilet bowl, with the base of thebag at shoulder height. When readyremove your clothing and positionyourself on the toilet ready to irrigate.

Remove the used stoma pouch/capand wipe away any excess faeces fromthe stoma and surrounding skin. Washthe stoma and skin carefully withwarm water and gently pat dry.

Allow a little water through the tubevia the clamp/flow control to expel airthat might be trapped in the tubethen close off. Fit the irrigation sleeveover the stoma, place the smallest endbetween the legs and into the toilet

bowl. Lubricate the cone and pass itthrough the top end opening of thesleeve, then insert the cone gently intothe stoma, so that it forms a dambetween stoma and cone. Open theclamp/flow control to allow water torun slowly into the bowel (approx 8-15mins). Once the water has beeninstilled, remove the cone from thestoma, fold over the top of the sleeveand fasten securely with a peg. Waitfor around 20mins muscularcontractions (peristaltic motion) withinthe bowel cause the water and stoolsto flow out of the stoma into theirrigation sleeve then out into the toiletbowl. After the main flush, clean thelower end of the sleeve, fold up, andclip to the top end of the sleeve. After10mins has passed and no furthermotion is felt remove the sleeveleaving it hanging over the toilet edge.

Wash the stoma and skin with warmwater and gently pat dry. Apply aclean stoma pouch or cap. Clean theirrigation sleeve (if using a reusableone) by holding it over the toilet bowlpouring warm water from the jug intoit or add a basin showerheadattachment to a nearby washbasin anduse the spray. Hang the irrigation kitup to thoroughly drip dry then store ina cool place. Dispose of the rubbish asnormal then wash and dry your hands.

Remember...says Sue...Everyone’sbody is different and that goes for thecolon too! Your body will adapt toirrigation and you will learn what worksbest for you and your bowel.

Graduated waterbag, tubing,water clamp,cone tipand sleeve

Manufactured by Welland®, a CliniMed® Group company. Welland products are distributed in the UK by CliniMed Ltd. Tel: 01628 850100 Fax: 01628 527312 Email: enquiries@clinimed.co.ukor visit www.clinimed.co.uk. CliniMed Ltd, a company registered in England number 01646927. Registered offi ce: Cavell House, Knaves Beech Way, Loudwater, High Wycombe, Bucks HP10 9QY. Welland®, CliniMed®, Aura™, Easy2peel™ and Dual-Carb® are trademarks of CliniMed Holdings Ltd. ©2013 CliniMed Ltd. 1697/0213/1

The new extensive range of Aura™ pouches feature our tried and tested skin-friendly Hyperfl ex® hydrocolloid fl ange, but now with the added benefi t of medical grade Manuka honey. The inclusion of Manuka honey in our Hyperfl ex® hydrocolloid may help to promote healthy skin around the stoma.

New Aura™ also has an accurate cutting guide for a perfect fi t, Easy2peel™ tab for easy removal, a super-soft water-repellent cover for outstanding comfort and a new Dual-Carb®2 and Dual-Carb®i fi lter for better odour management and reduced leakage.

Manufactured by Welland®, a CliniMed® Group company

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.

For a free sample of Aura™, please complete the coupon and return it to: CliniMed Ltd., FREEPOST HY241, High Wycombe, Bucks, HP10 8BR(NO STAMP REQUIRED), call our free confi dential Careline on 0800 036 0100 or visit www.clinimed.co.uk

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

Postcode:

Tel. No.: Email:

Available in a range of sizes and in Closed, Drainable, Urostomy and Stoma cap variants, the new Aura™ with Manuka honey is our most comfortable, skin-friendly pouch yet.

Find out more at www.clinimed.co.uk

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

I’m Fine...really?!

Sarah writes: Surgery of any kind is ashock to the system, both physicallyand emotionally and everyone willhave their own rate of recovery. Weoften get asked on the CA Facebookgroup if it’s normal to feel so down6-8 weeks after a colostomy operation.The simple answer is Yes. By the sixweek point you may well be feelingmuch better physically but adjustingemotionally to having a stoma cantake some time. How many of you canrelate to the title question? I’vecertainly said, “I’m fine” when actuallyI’ve felt pretty damn rubbish. Butfamily and friends have been so goodwe don’t want to worry them furtherby telling them we are feeling sadbecause our life has been turnedupside down – we feel we should begrateful the stoma has saved our life,or helped our condition. And of coursemost of us are grateful the stoma hashelped our problem, but it is a hugeadjustment to come to terms with andit is easy to feel very alone.

The CA and sister charities forileostomies (IA) and urostomies (UA)offer a huge amount of support, andwith it – a community of people whounderstand ‘living with a stoma’.

The CA can put you in touch with avolunteer with similar experiences toyou. Talking to someone who hasalready walked a mile in your shoescan really help! If you have a problemcrop up and aren’t sure where to turnCA offers its unique 24/7 helpline,manned by trained volunteers, all withexperience of ‘living with a stoma and

colostomy’. The CA ‘closed’ Facebookgroup is a safe haven where newostomates and experienced ostomatescan help each other overcomeproblems, make friends or have agood moan if that will make them feelbetter! It is often easier to tell peopleoutside your family circle how youreally feel. There are manyinspirational stories in Tidings. It maybe you read them and think you willnever get to that point.

I certainly didn’t think in the first fewweeks that I’d get to a point where Icould go on holidays abroad or jugglefamily life, a full time job AND astoma. But you will move forward,even if it feels frustratingly slow, afterthe first few weeks you can hopefullylook back and see how you haveprogressed. The bag change that usedto take a good half hour is becomingquicker; getting dressed feels less of amarathon. In the early days you willprobably still be feeling very tiredalways remember to give yourself abreak. We all need that even thoughwe feel we must carry on, for the sakeof everyone around us. Surgery is anassault on your body and the scars onthe outside may not reflect what hasgone on inside. Listen to your innervoice and take the time to rest – yourbody is asking for it – being exhaustedcan make you feel more down andless able to cope. Time is a greathealer.

The six week point is a good time tostart being proactive. You may realisethat you want to learn more aboutyour stoma and the products you areusing. That’s a good thing – you arebeginning to take ownership of yourstoma. You may be happy with theproducts you are using or you may feelthat something is not quite right. Youcould be experiencing some leakageor the skin around your stoma maylook red and feel sore, or your stomamay have reduced in size so yourpouch doesn’t sit as well as it did. Ifyou have any queries always contactyour stoma care nurse – they will behappy to discuss your concerns. Stomacare nurses are busy people as youwill remember when you were inhospital but their mantra is – ‘pleaseleave a message on our answerphonewe will ring you back’.

You could take a look at the manynew samples of products with yourstoma care nurse and those advertisedin Tidings. All of the stoma productmanufacturers would be happy tosend some samples so take advantageof this to find what works best for you.You may be thinking about colostomyirrigation, or getting back to work. Ifyou’ve not had a follow up with yourstoma care nurse now would be agood time to make an appointment.

Have you read through that pile ofliterature you were given in hospital?Many of us are so overwhelmed andshocked at the beginning we can’tremember much of what the stomacare nurse has told us, and the leafletswere just a bridge too far so they’vestayed in the drawer. You may haveissues with body image but you aren’talone – most of us look down andthink the bag on our side has changedeverything. Many people worry aboutthe clothes they wear – will the bagshow, will my clothes stop the bagfilling? Experiment with your normalclothes but if you are still concernedthere are companies that makespecialist underwear and swimwear,which might give you that extra bit ofconfidence to feel better. It’s all aboutgetting the best quality of life possiblewith a stoma and it takes time toadjust to this new norm. You probablydidn’t want a stoma – I definitelywouldn’t have chosen to have one, butnow I have it I am determined I amgoing to have the best life I possiblycan.

If you are still feeling low then your GPor stoma care nurse will be able topoint you in the right direction forprofessional support. The support mayvary depending on your underlyingcondition, for example cancer versus aruptured bowel due do diverticulitis,but your healthcare professional willbe able to identify what suits you best.You may be eligible for cognitivebehaviour therapy, where problemsare identified and strategies developedto help overcome them, or counselling,stress management or even hypnosis.But the main thing is not to sufferalone – the help is out there so speakto someone and find out what isavailable to you.

H E A LT H A D J U S T I N G TO L I F E W I T H A S TO M A

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OPM Department, B. Braun Medical Ltd, Freepost SF10771, Sheffield, S35 2FZ

Name:

Address:

Postcode:

Telephone:

Email:

The submission of personal or business data (e-mail addresses, names, addresses) is done on an explicitly voluntary basis. In submitting such data you indicate your consent that such data will

be collected, processed or used for the purpose of making contact and future marketing promotions. This data will not be transmitted to any third party unless you explicitly indicate that this

is your wish. If you wish to be removed from our database for further marketing promotions on Softima Active please tick here

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

Tel. (0114) 225 9000 l Fax (0114) 225 9111 l www.bbraun.co.ukXX-SOAAD-06-13

Please send me samples of:

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Confi dence begins

with a smile

Enjoy the safety, security and self-confi dence of Brava™

Elastic Tape every time you bend, stretch or twist.

The Coloplast logo is a registered trademark of Coloplast A/S. © 2012-05. All rights reserved Coloplast A/S, 3050 Humlebæk, Denmark.

TM

We know you can only feel truly confi dent

when you know your stoma appliance

is secure. So we’d like to show you a

way to ensure your base plate is held

fi rmly in place, however much bending

or stretching you do. Brava™ Elastic Tape

bends, stretches or twists any way you like,

to follow the body contours around your

stoma. Whichever way you move, the tape

moves with you.

Thanks to bevelled edges you don’t need

to worry about lifting or rolling and you may

soon fi nd the confi dence to leave longer

between changes.

Why not order some samples today to try it

for yourself? All products within the Brava™

range are available on prescription – so if

you have problems with leakage or sore

skin and have any questions about whether

Brava™ Tape is right for you, please contact

your stoma care nurse.

“I love Brava™ Elastic Tape.

I work full time, have a busy

social life and go swimming

four times a week, so it’s

important to feel secure.

It only takes a second

to pop on and gives me

extra peace of mind.

It means my bag fi ts in

around me, rather than

me fi tting my life

around my bag.”

Vicky, Hounslow

So easy to use!

Smooth the tape onto the skin

to ensure the base plate is

kept in position.

For extra security use two

tapes to surround the

base plate.

The information you provide to us will be used to process your orders and for general administrative and record-keeping purposes. We will only disclose your personal

information (including details of the products you have purchased from us) to carefully selected third parties who provide services to us and/or if required by law. By

submitting your information to us, you consent to Coloplast using your information in the manner described above and to us contacting you by telephone and/or post in

order to keep you informed about products and services that we think may be of interest to you. You are also accepting that Coloplast may need to contact you to clarify

your sample requirements. Please tick the box if you would like to be emailed with regular updates of Coloplast products and services

Make me smile!

0800 220 255 Mon-Fri 8am - 6pm, Sat 9am - 12.30pm.

Brava™ Elastic Tape is just one of

our wide range of Brava™ stoma

accessories. We’ll happily advise

you on other products that might

be suitable for your needs.

Simply complete this reply slip

and return it by FREEPOST:Coloplast Limited, FREEPOST, Nene Hall,

Peterborough Business Park, Peterborough, PE2 6ZX.

Request your samples online at

brava.coloplast.co.uk/tape

First Name:

Surname:

Address:

Postcode:

Email:

Telephone:

Please send me some Brava™

Elastic Tape samples

OCBRAVA1012

Think again. Think Brava.™

www.ascnuk.comFormally known as WCET-UKThis is a new national organisation founded in 2013 butremains a charitable trust and continues to work incollaboration with our international association – WorldCouncil of Enterostomal Therapists (WCET).

This launch provides an opportunity to raise the profile ofstoma care nursing in the UK, which will promoterecognition of the organisation by employers, Trusts, patientorganisations and individuals with a stoma throughout theUK. The aim of the ASCN UK is to become a stronger forcein order to progress and develop the speciality of stomacare. Our outcome would be to enable individuals with astoma to have access to and be treated by nurses withspecialist knowledge, which we believe should beadvocated, within the current climate of reduced resourceswithin the NHS. We will continue to work closely with themanufacturers and delivery companies associated withstoma care, in order to offer people with a stoma a choice.

The elected committee and trustees promote the aims ofthe organisation and encourages new and experiencedstoma care nurse specialists to become members.

Members are then supported by;• Sharing expert clinical practice (both nationally and

internationally)• Promote educational and research opportunities, for

example; a national audit to demonstrate the costeffectiveness and value of individuals being regularlyreviewed by a specialist stoma care nurse

• Develop and advance the specialist knowledge requiredto deliver expert care to individuals with a stoma, forexample; updating national standards for delivering aconsistent stoma care service

Our Annual National Conference will be held on 6-8thOctober 2013 at Celtic Manor, Newport, Wales. Detailsof this can be found on our website at www.ascnuk.com

Association of StomaCare Nurses UKAssociation of StomaCare Nurses UK

H E A LT H S TO M A C A R E N U R S I N G

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

Adhesive removers spraysand wipes...When we receive our stomas, forwhatever reason, it means that we willuse an appliance (either a one-pieceor a two-piece). The appliance will beplaced over the stoma and pressedgently onto your tummy allowing theadhesive to make contact. This area ofthe body will have reduced exposureto the air, therefore the skin aroundthe stoma, known as peristomal skin,is often very soft and delicate.

Changing a stoma appliance withouthaving a skin care routine in place canbe both painful and damaging. Anadhesive remover spray/wipe, whenused consistently will make theremoval of the appliance easier andwill help retain your skin’s naturalintegrity. Soap can be used but it candry the skin so it is generally advisableto avoid using it on peristomal skin,(as colostomates have differingamounts of large bowel, their stomasbehave differently and the number ofappliance changes needed each day,may vary enormously). Therefore it isvery important that adhesive removersprays/wipes become part of yourappliance change routine.

Keeping the skin around the stomahealthy is essential – removing theappliance without an adhesiveremoval spray/wipe can result inpeople pulling it too hard, causing skinstripping, pain and increasing potentialsoreness. Problems such as ‘picking’in one area to remove the appliancecan result in ulceration of that area.

Top Tip: After changing your appliancecheck that the slight reddening of theskin, which comes when the bag isfirst removed, is fading by the time youapply the new appliance. This is justthe usual flushing of the skin and nota sign that the skin might be reactingto the adhesive. If the skin staysflushed and red but intact (erythema)for any length of time always consultyour stoma care nurse.

There are a number of adhesiveremover sprays/wipes on the marketand most, once sprayed or wipedgently across the adhesive area, willrelease the adhesive quickly. Becausethe skin dries in seconds, a newappliance can be positioned in placealmost immediately.

Adhesive removers are alcohol-free, oilor silicone based. It is important to useone that suits your skin type. Take

advice from your stoma care nurse. What to look for, when choosing anadhesive remover spray/wipe is onethat:-

• Is alcohol-free and skin friendly• Will dissolve hydrocolloids• Does not leave a residue of adhesive

on the skin• Does not require a secondary skin

cleansing product • Is easy to use and simple to apply

An adhesive remover spray/wipe thatworks immediately and takes awayany stress that can come whenchanging a stoma appliance.

It is most important that healthcareprofessionals recognise that adhesiveremover sprays/wipes are just one of aseries of important and necessaryitems required by all ostomy patientsand therefore should be readilyavailable and included on theirprescriptions.

Seals for Stoma Appliances...Barrier wafers, rings and seals are usedto create a flat surface to seal the areabetween the stoma and the pouch.A good seal between the wafer (skinprotective flexible wafer/barrier joinedto the pouch - one-piece appliance),flange (skin protective flexibleflange/barrier unit separate withattached pouch - two-piece appliance)and skin is important to preventleakages. Sometimes this is notpossible because the skin around astoma has dips or creases, crevicesand folds in the skin, and even scartissue. All these can stop the pouchsitting correctly with the stoma causingleakage, which can be very distressing.

Because we need a snug seal aroundthe stoma and the appliance, washersare used to fill in the gaps that makethe skin around the stoma uneven. Using a washer means that the outputfrom the stoma will not sit on the skinand cause soreness.

There are many types of washers,which can be adapted to provideprotection. Some can be moulded toensure a snug fit; others can be cut tofit and moulded around the stoma.They are all skin friendly. This productgives us protection from leakage andconfidence, security and peace ofmind when out and about.

Drops and Odour products...One of the first questions any newpatient who knows they are to receive

a stoma will ask is, ‘will it smell’. Idon’t think that very many medicalprofessionals really appreciate the‘huge’ importance and weightattached to this question. What is saidin response may have a major impacton the patient’s adjustment back togood health and wellbeing.

Odour is always of great concern topeople with a stoma. Most modernappliances are now odour proofprovided they are fitted properly. Youshould only be aware of odour whenemptying or changing your appliance.While there are many products in thesupermarket that we can spray in thebathroom after we have changed ourpouches – none will actually takeaway the odour of a changed pouch.Room sprays are not the same asspecialist odour reducing products asthey do not break down the odour butmerely mask the smell for a shorttime.

Ostomates need to feel confident thatthere is no odour coming from theirpouch. Odour neutralising products,efficient in eliminating odours,available in different forms e.g. gels,drops, tablets and sprays can improveconfidence and promote a feeling ofwellbeing. Specialist neutralisingsprays created with perfumes such as,Fresh Apple, Blackberry andSandalwood are highly effective. Just afew droplets of odour neutralisingliquid placed into the new pouch toeliminate smells whilst emptying theprevious one can make all thedifference. Additionally, neutralisingpowder that dissolves over time toabsorb fluid in the pouch makes iteasier to empty.

Have a discussion with your stomacare nurse about which odourneutraliser would suit your lifestyle.Alternatively, contact the manymanufacturers that make theseproducts and request samples to try. If you think odour is excessive, then itwould be wise to check with yourstoma care nurse.

All these products, available onprescription, give support andconfidence to you and fellow ostomates.After all, it’s how you feel aboutyourself and how you manage yourstoma that matters! It would be a verydull world if we all drove the same car,lived in the same house and did thesame things each day! But with choicecomes responsibility – order only whatyou need, when you need it.

New series...focus on additional ostomy products

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

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

H E A LT H A D H E S I O N S A N D B L O C K A G E S

The ileostomy has been part of thesurgical management of intestinalconditions for nearly 100 years.Recently in Cairns I heard Dr Vic Faziodescribe how Australian armysurgeons (Colonels Albert Coates and‘Weary’ Dunlop) used defunctioningileostomies to save the lives of soldierswith amoebic dysentery in Japaneseprisoner of war camps. The stomaappliance was a flattened metal waterbottle with an opening placed over thestoma - so the stoma appliancecompanies have made some progresssince then. And talking about historybrings us back to Professor BryanBrooke and the 60th anniversary of hispublication of a new technique for

constructing an ileostomy (everting orturning the bowel inside out) toreduce ileostomy complications - theLancet July 19th 1952. As we know hisinspired technical advance secured areal leap in quality of life for thosewith an ileostomy, from 1952 to thepresent day.

But during all of this surgicaldevelopment, adhesions have beenthe constant companion of surgery -causing roadblocks and commonlyleading to assumptions- and so thistopic. Roadblocks in intestinal surgeryare blockages - a not infrequent eventin the life of anyone with a stoma. Andwe blame adhesions for many post-surgical problems, because no matterhow big or small an operation on theabdomen, adhesions form afterwardswithin the peritoneal cavity.

First some anatomy - theperitoneal cavityBehind the tummy wall muscles, thereis a space called the peritoneal cavity.Within this space the small bowel as a3 metre (10 feet in old money) coiledtube is free to move around. Becausethe intestine has a slippery peritoneallining and the peritoneal cavity is alsolined by slippery peritoneum,everything slips past everything else.But after an abdominal operation,handling of the bowel and operatingon the bowel causes loops of gut tostick to each other and also stick to

the lining of the peritoneal cavity. Whythe bowel sticks after an operation isnot clear, but it seems to be aresponse to tissue handling andrepresents some process of healingand scarring. The end result is thatinside most abdomens that have had asurgical operation, there are areas offibrous scarring that hold the normallymobile small bowel stuck to adjacentloops of bowel and the inside of theabdominal cavity.

So adhesions - good thing or bad thing?Well we really don’t know whatadhesions are for. There have beenanimal experiments where adhesionformation seems to assist the healingof bowel surgery such as whenconnections or anastomoses are madebetween two pieces of bowel. Butadhesions can be a real nuisance assurgeons have to spend quite a lot oftime carefully dividing adhesions to doan operation in someone who has hadprevious surgery - not to mention theoccasions on which we have to lookafter someone with obstructioncaused by adhesions. So adhesionsalmost certainly have some goodbiological purpose in the majority ofpeople - but cause significantproblems for a minority of surgicalpatients.

Roadblocks and AssumptionsMr Nigel A Scott, BSc MD FRCSConsultant Colorectal Surgeon, Lancashire Teaching Hospitals Trust, PrestonPresident Association of Coloproctology of Great Britain and Ireland (2011-2012)

Adhesion ‘kink’

Mr. Nigel A Scott, BSc MD FRCS

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

Let’s look at RoadblocksThe intestine is designed to move foodfrom the mouth along the gut in onedirection - out. This is done byperistalsis, the bowel in front of thefood relaxes while the bowel behindthe food contracts and squeezes thefood and the juices onwards. All doneunder automatic pilot and as long asthe gut pipe is reasonably open thenall moves forwards and all is well. Butadhesions interfere with this process

by kinking the bowel tube; instead of anice smooth mobile tube an adhesioncan fix the bowel at an acute angle.Most days food and juices get past thebend, but throw in a bowel of broccoli,an avalanche of almonds or a ménageof mushrooms and oh boy there isgoing to be a major hold up at thatkink; and so we have an obstruction. Itis difficult to explain why dietaryindiscretions on some days don’tcause trouble but on other days theydo - but it does seem to be the casethat indigestible vegetable fibreincreases the risk of adhesionblockage.

As the intestine is a single lanecarriageway if it blocks there are nodiversions and everything stops. So thestoma stops, the belly swells as gas andfluid cannot go through and get out andthere is pain. This is the colic of intestinalcontraction trying to force things past theblockage. Finally there is vomiting, as ifthe intestinal fluid cannot leave the

bowel through the stoma then it comesback up as vomit. Now it has to be thecase that many, many blockages clearthemselves at home and never see adoctor. The real roadblock pros (youknow who you are) just restrictthemselves to fluids and pain killers andover 12 to 24hrs the blockage shifts andnormal service is restored, often withmore fluid output than normal in thestoma bag.

But if the roadblock does notspontaneously clear, then a trip up tothe hospital is required. The diagnosisof obstruction is made on the plainabdominal X-ray or CT scan and thegut rested by drip (the intravenousfluids for rehydration) and suck (thenasogastric tube to takes off the fluidabove the blockage). And again with24-48hrs of patience the majority ofblockages clear and the stoma worksand all is well.

However, a minority of patients withadhesion obstruction do not settle andso need an operation. One way weidentify who will and who will notsettle is to do a gastrografin followthrough X-ray. For this you drink aradio-opaque dye and we do X-rays tosee if the dye drink will go through thebowel. If the dye doesn’t go throughthe bowel, the blockage has notresolved and then an operation isrequired to free the bowel by dividingthe adhesions.

These operations are very variablefrom just a simple snip of a singleadhesion to hours of painstakinglyfreeing of the entire small bowel. Soall abdominal operations produceintra-abdominal adhesions, butobstruction that will not resolvespontaneously is rare. The lifetime riskis estimated to be about 2% - so 2 outof every 100 people that have had anabdominal operation may requiresurgery for obstruction at some futuredate.

Now the assumptionsEven if adhesions don’t causeobstructions they must be bad, asadhesions cause abdominal pain –don’t they? While this is certainly anassumption commonly made aboutadhesions, there is no real evidence toback up this view. Because manypeople with masses of abdominaladhesions never have abdominal painand further, the surgical division ofadhesions does not get rid ofabdominal pain. One trial designed toanswer the adhesion-pain questionlooked at the effect of the laparoscopic(telescope inside the tummy) divisionof adhesions in gynaecology patientswith abdominal pain.

Half the patients simply had atelescope examination of theabdomen but the adhesions were leftalone and the other half had atelescope inspection and then theadhesions were divided. Nobody -patients or doctors - knew who hadwhat done. Both groups of patientshad abdominal pain before the trialand after the trial both groups ofpatients had the same level ofabdominal pain. So in thiscomparison dividing adhesions gaveno obvious relief from abdominal pain.

It seems strange to conclude thatadhesions have no role in abdominalpain - given all the attention that painand adhesions gets on the internet.But let’s get down to considering whatpain actually is. In the end pain issimply an electrical signal we receivevia nerves from a part of the body thatis then ‘felt’ or perceived as pain in ourbrain. The electrical impulse sent up to

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H E A LT H A D H E S I O N S A N D B L O C K A G E S

the brain is the same no matter what thesensation responsible for the impulse. Itis how the signal is processed in thespinal cord and the brain thatdetermines whether or not an impulse isfelt as pain, or feels like a touch or evenif the impulse is completely ignored byour consciousness. (Remember AgentSmith in the film Matrix - our entirereality is a series of electrical signalsreaching and being processed by thebrain.)

Stimulation of the gut by acidperfusion of the gullet in some peoplecan cause much more pain than in‘normal’ people. This means that insome people the gut can behypersensitive and send more ‘painful’information to the brain than isnormal. In other circumstances whenwe get a lot of pain from theabdomen, it could be that the brain forsome reason is looking for trouble andreading normal nerve messages fromthe gut as pain messages - when allimpulses sent are just about routineinformation.

Brain scans can show different parts ofthe brain ‘lighting up’ with activitywhen the gut is stimulated - but thepattern and degree of brain activity is

affected by a person’s emotional state.So pain is complicated - whatmessages are being sent to the brainand how the brain perceives or feelsthe information - and gut pain is verycomplicated. Surgeons only have onetool - cutting someone open andlooking inside (‘to a man with ahammer, everything looks like a nail’.)And when a surgeon is asked tooperate just for adhesion-pain, itseems likely that no matter how manyadhesions are cut the pain problemwill not be resolved. More research inthis important area is required.

Cutting holes into the abdomen inorder to correct and remove disease isquite a remarkable achievement ofmankind - since surgeons began to getthe measure of appendicitis in themid-nineteenth century. However, allabdominal surgery seems to lead toadhesions and within limits the biggerthe surgical problem the moreadhesions we see - which indicatesthat adhesions are a healing responsefor the patient’s benefit. True there isa downside and a significant numberof people need conservative (bowelrest) management of adhesionobstruction - with a few requiring aninvasive operation. But abdominal

pain without symptoms of obstruction(absent stoma output, distension andvomiting) not only doesn’t mean aroadblock but often leads to anassumption about adhesions causingthe pain. This assumption has notbeen substantiated and we need moreresearch to understand tummy pain inthe long term after surgery.

Finally a thank you to the IA forgranting me the honour of deliveringthe 2012 Bryan Brooke lecture. I amespecially proud that I could make thispresentation at NC12 as both thePresident of North West Lancashire &Cumbria IA who hosted this meetingand President of the Association ofColoproctology (note the chain). It isthe case that the battles and successesof people overcoming disease andmoving on, can only come about bythe strong partnerships we witness inthis meeting; the bringing together ofpatients, families, specialist nurses,industry and surgeons in a commonpurpose.

• Take sufficient supplies for your stay

• Take all supplies and travel stoma kit as hand luggage

• Ask the airline in advance if you needextra hand baggage for your supplies.

• ‘Check in’ online 24 hours before departure to secure your preferredseat.

• Avoid food and drink the day beforeyou are to travel that are likely tocause upset or excessive wind.

• Take medication to firm up or loosen output.

• Carry your Travel Certificate with youespecially when passing throughimmigration or security areas.

• Take some form of electrolytereplacement solution in case youbecome dehydrated.

• Drink bottled water in foreigncountries, avoid ice in drinks and usebottled or boiled water to cleanaround your stoma area.

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

Your Travel Checklist...On top of all the normal precautions...like making sure your traveldocuments are in order, taking copies of important documents with you incase the originals get lost or stolen...the ostomate needs to remember to:

Here’s how...simply contact...

General Enquiries:0118 939 1537

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

or

E-mail: cass@colostomyassociation.org.uk

or download from our

Website: www. colostomyassociation.org.uk

CA Booklets, Leafletsand Factsheets are

available...

www.colostomyassociation.org.uk

Travel Advice

Having a colostomy

should not prevent

you from travelling

at home or abroad

Freephone helpline:

0800 328 4257

www.colostomyassociation.org.uk

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Freephone helpline:0800 328 4257

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

YO U N G O S TO M AT E S B R E A K A W AY

Breakaway offers support tochildren who have bowel andbladder diversions/dysfunctions and theirfamilies. We offer uniquesupport all over the UK!

Our events include family activityweekend, where you and your childwill take part in confidence buildingadventure activities, meet otherfamilies in the same position as you,share your stories and gain comfortand support from knowing that youare not alone. You will also have theopportunity to speak with ourprofessional volunteers about yourchild in a question and answersessions.

“Only Kids Allowed”... is what it says!We offer the opportunity for schoolyear 7 and above aged children tohave a few nights away from homewith Paediatric Nurses, leaving Mumand Dad at home, and having a tasteof independent living*. Centre Parcs inSherwood Forest is this year’s venue. Information Days…we plan to takeBreakaway all over the UK this year,holding short, but fun informationdays! We aim to bring familiestogether, in a relaxed environment,and show them the work ofBreakaway.

For more information on any of ourevents please contact;Info@Breakaway-visit.co.ukwww.Breakaway-visits.co.uk07903220040

Or follow us on facebookhttps://www.facebook.com/Breakaway.visits

What our Families Say:I discovered Breakaway while chattingon a forum for parents of children likemine. I then got in touch with theFounder Julie and haven’t lookedback! Breakaway has opened so manydoors for us as a family.

We were keen to get in touch and beinvolved with Breakaway as we knewof only a few families online that couldrelate to what we were going through.At the time (summer 2010) we had 3children aged 9 months, 3 and 5. Theyounger two were both born withimperforate anus. The baby had acolostomy and our 3 year old waswaiting to have the ACE procedure.We had also not long had theconfirmed genetics diagnosis ofCurrarino Syndrome, which had comedown my husband’s side of the family. So after multiple surgeries with bothchildren and more ahead of us,Breakaway was a way to meet othersface to face and share our experiencesand learn and find comfort andsupport from others in the same boat,so to speak.

Breakaway has in fact done so muchmore for us than we could havehoped. The children are growing upknowing that although they may bedifferent to their peers, they are not

alone and there is always someonewe can turn to for things we areunsure about. They have made friendsand stay in touch between Breakawayevents and although still young, (now7 months, 3, 6 and 8 years, yes therehas been another addition to theBreakaway family!) this will I am surebe a huge help in the future as theybecome more aware of their conditionand the difficulties that they conquerevery day. As parents, Breakawaymeans we are now, never more than atext, call, private message or socialmedia status away from help, comfortand support when the going getstough or we just want to share amilestone!

The kids love the freedom thatbreakaway gives them, from everydayproblems, a day out with school is fardifferent from a day out withBreakaway. Which in turn makes it adifferent day for me too, not having toworry about what might happen, howmany times we visit the toilets, etc.

Everybody understands and everybodyhelps and supports each other. It isalways a sad day when a breakawayevent comes to a close, but we alwaysmake new friends and know that weare all only a few clicks away, whilewaiting until the next one!!!

Breakaway...goes from strength to strength!Unique...weekend activity breaks designed for young people aged 4-18 withbowel and/or bladder diversions/dysfunctions and their families.

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

Write to us or send adonation to:

BreakawayPO BOX 7982SwadlincoteDE11 1FB

More informationabout Breakaway...

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

Breakaway NEW events for 2013...23rd - 26th August 2013 atWoodrow High House, CherryLane, Woodrow, Amersham,Bucks HP7 OQG

More importantly we know that weare no longer alone!

Julie BastinFounder and Trustee

*to be eligible to attend a Breakawayevent which doesn’t include parents,you must have attended a Breakawayfamily event prior to this.

Breakaway...Putting Smiles on Young Faces...www.youtube.comhttp://www.youtube.com/watch?v=5ga9xtwxXgI

Donate online via: http://www.justgiving.com/breakawayvisits

Breakaway May 2013 - Kids’ FeedbackWhy did you want to come to Breakaway?• To have fun!• Because I could have friends with the same problem.• So my brother can socialise with people like him.• Because I thought I would make lots of new friends and I did!

What did you enjoy the most?• Doing activities that I didn't think I could do.• The snow tubing and toboggans.• Disco and hide and seek in the dark.• I enjoyed the tobogganing and the zip wire the most.

Can you write a few sentences about the weekend?• This is my third time at Breakaway. I really enjoy coming because I no

longer feel that I am on my own. I met some great friends that I keep intouch with outside of Breakaway.

• My favourite thing was tobogganing. I also liked the disco especially Gang-nam style and the cannons at Beaumanor.

Breakaway May 2013 - Parents’ FeedbackHow did you find out about Breakaway?• Through a friend of mine who saw me so upset I couldn't even think of

googling for help, she did it for me and came across the Colostomy Association who then signposted me to Breakaway.

• From a stoma nurse originally but a local organisation sponsored us to come.

Why did you want to come to Breakaway?• To meet other parents and children with the same stomas.• We came on the weekend to try and meet people in similar circumstances

so we didn't feel so isolated.

What did you enjoy the most?• Being together and sharing our experiences of the activities and social events.• Everything! Perfectly well balanced.

Susan writes: In 2008 I had a DeepVein Thrombosis in my right leg andwas prescribed warfarin, later in thesame year I went on holiday to Spain,still on medication but with thedoctors approval. It was while onholiday that I first had blood in mystools. I thought this was because ofthe warfarin and didn’t mention it tomy husband. After returning homethere were a few times when ithappened again. In fact, it was gettingworse. Eventually I went to the doctor

and by now I was off the medication.He thought it could just be piles andtold me to monitor the problem andgo back if it didn’t improve. Well, ittook a turn for the worse. One day Ihad terrible diarrhoea and was passingnothing but blood. I was sent to havean endoscopy and a polyp was foundin my back passage.

Things moved quickly from then on.Because the polyp couldn’t beremoved, I then had a colonoscopyand a biopsy, which proved to besinister. I was sent to see the surgeonwho decided to do a more in-depthbiopsy which involved staying inovernight. The result was not good, Iwould have to have a major operationand would have a colostomy bag; myback passage would be removedbecause of where the tumor was. Istarted radiotherapy and chemo inJanuary 2009 and had my op in Maythat year followed by more chemo. Itwas a long road to recovery, but I gothere thanks to a very good surgeon,nurses and my husband. I returned to

work the following year and have hadthe all clear. I still have regular checkups, my bag hasn’t stopped me havinga life and I’ve just started irrigation,which is marvelous and totallyliberating. I would say to anyone whocan irrigate, “give it a go”. I’ve alwaysthought there are people worse offthan me and we have to take what lifethrows at us, I feel lucky to be where Iam today!

From Ed:It would be interesting to ask this GPPractice if they felt they had done theirvery best for Susan. Was diagnosingpiles the very best medical opinionthey could have given her? Did theinitial diagnosis put her, the patient,first? Or was it simply incompetent?

It is clearly not an easy job to be a GPbut 'blood in the stools' is a classicindicator of something: dark, perhapssomething serious, bright and fresh,perhaps something less serious.Either way it would have been wiser toinvestigate further at the outset.

R E A L L I V E S S U S A N ’ S S TO R Y

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Christina Hammond, a 61-year old colostomate living in Bristol, had her stoma formed in 1986,

concerns over the operation, as she wondered how the

Following a successful operation, Christina quickly found an ostomy product that was right for her, “I was pleased with my pouch”, she says.However, she still had concerns that it would limit her lifestyle and achievements, so determined to prove to herself that she could still do anything, Christina signed herself up for a deep-sea-diving course in Thailand and became

I’m really pleased that I did it. I showed that my stoma doesn’t have control over what I can and can’t do.”

“In February 2012, out of the blue, I was told my product was being discontinued

I had been using the same pouch for 25 years, so I was distraught. I had found a product that worked for me, it was comfortable and more importantly

it worked with my routine. I felt really let down, I felt that the company didn’t care”, Christina explains.

Christina had an exciting journey coming

reliable replacement pouch quickly. She says, “I was set to travel to Australia in January 2013 for 3 months and

away, so that I could enjoy myself.”

Even with this 12-month window and Christina’s proactive attitude, she

her. She contacted different stoma care companies directly for samples, but had little luck. “It was a real challenge. There were so many different products, but I

for me as my old one did”, she says.

“My stoma has to live with me; I don’t have to live with it”

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living in Bristol, had her stoma formed in 1986,Christina Hammond, a 61-year old colostomate

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living in Bristol, had her stoma formed in 1986,Christina Hammond, a 61-year old colostomate

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living in Bristol, had her stoma formed in 1986,Christina Hammond, a 61-year old colostomate

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Christina Hammond, a 61-year old colostomate

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AP-013598-GBApril 2013

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“Natura® Plus gives me the confidence to live my life how I want to live it”

Christina was becoming increasingly frustrated, as her stoma started to have an impact on her life like never before. “The

to worry about leaving the house in case I had an issue with the pouch while I was out”, she explains. “I had all sorts of issues, like getting the pouch on and off, it not sticking

was also constantly worrying about leakage.”

“After months of struggling, I met Sue Peckham from ConvaTec in 2012 through a support group I help to run. She recommended Natura® Plus Mouldable Technology™ and I’ve never looked back. Natura® Plus helped to ensure I had a fantastic time in Australia. The pouch even stayed secure when I was splashing about in the sea!”, she says.

“If I want to eat a vindaloo then I will”Christina is relieved not to have to worry about particular problems any more. She says, “I used to have big issues with

waste couldn’t move down the bag, which was incredibly uncomfortable. With a convex product like Natura® Plus there is always air in the pouch so you never experience

this issue.” She adds, “with some of my old products the baseplate used to come unstuck from my skin, but with Natura® Plus I’ve never had this problem. I also no longer need an adhesive remover, as Natura® Plus doesn’t leave any adhesive deposits on my skin.”

Expressing a very positive attitude, Christina says, “for the last 27 years I have lived by this motto: my stoma has to live with me, I don’t have to live with it. It’s so important to me that I’m able to go about my life as normal; if I want to have a vindaloo curry, then I will! It’s just a question of being sensible and not eating it the night before I have a big day out.”

Christina runs the Bristol Ostomists Self-Support group to help others that have been in a similar situation. “It’s so important to have these support groups as nobody talks about stomas. At our group, ostomates can ask those awkward questions without the embarrassment, as they know that everyone else has been through it too. New ostomates take great comfort from seeing how other ostomates have continued to live normal lives”, Christina explains.

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April 2013AAP-013598-GA

AP-013598-GB

R E A L L I V E S R E A D E R ’ S R E P LY

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

Following Bob Adamson’sarticle and his “Travel Tipsfor Ostomates” in the lastissue of Tidings, JohnBradley wrote to tell usabout his experience.

I had my stoma in November 2010after being housebound for tenmonths. In that time I had to give upmy job as a hod carrier and cancel aholiday in Tunisia. When I was fit towork I was lucky enough to get a jobas a domestic at the same hospital as Ihad my surgery. In 2011 I went onholiday with my wife, daughter, son-in-law and our two fantasticgrandchildren for a week inScarborough. We had a fab timealthough I was still getting used tohaving a bag.

I asked people I have met at my localstoma meeting about going abroad, assome of them go all over the world,without problems. My wife and Idecided to go abroad this year. Wegot our holiday dates from work andwent to our local travel agent andbooked to go to Tunisia. We had a fiveweek wait before we flew out so Istarted asking my stoma nurses andfriends about what I should be takingaway with me. I ordered extrapouches, flanges, wipes and sprays. Iphoned around for insurance and gota good deal with the Co-op at no extracost and took a travel certificate withme just in case I got stopped at theairport. As the holiday got closer I wasbecoming quite concerned as peoplewere telling me about getting an upsetstomach and problems with the heatetc.

The flight was at 6am on the 8 July2012. I went through security OK andhad all of my stoma things in my handluggage, no questions asked. I wore ashield over my bag to protect it fromthe seatbelt on the plane. There wereno problems during the flight. I wentto the toilet once; it was a bit tight butI managed OK. That was the firstobstacle out of the way!

Next was the heat. We stepped off theplane to 20° at 9:30am and all I wasthinking was, will my pouch fall off?As the day wore on, the temperaturewas over 40° with the highest daybeing 51° and still my pouch did notbudge. That was obstacle number 2out of the way!

Next was the food and upset stomach.The food was really nice and I atenearly everything – tomatoes,sweetcorn and rice, all of the things Inormally stay clear of at home. I evendrank fizzy pop! That was the finalobstacle out of the way!

All the worries I had about the pouchcoming off with the high humidity orwhile I was in the sea or theswimming pool were unnecessary,same with the flight and the food! Sonearly two years after we had tocancel our holiday, we went and had afantastic ten day break. So if you thinkyou can’t go on a foreign holiday,please don’t be put off as there is a lotof help and advice out there. Having a stoma has given me mynormal life back. You can overcomeall of your obstacles with confidenceand positive thinking.

John Bradley

Are you goingabroad thissummer?

Do you have your travelcertificate?

The CA producesa travel certificatewhich can beshown to securitystaff at airportsetc. to prove thatyou have astoma. Itexplains what a stoma is, thatyou will be carrying spareappliances in your hand luggage,and that if a body search isnecessary it will have to be carriedout in private.

This information appears in French,German, Italian, Spanish,Portuguese, Greek, Turkish,Croatian, Polish, Russian, Arabic,Mandarin. Hindi, Thai andVietnamese.

When you are going throughsecurity at the airport, it is best tohave the certificate in your hand,not in your suitcase or bag whichwill be on the conveyor belt! If youare at a foreign airport it is also agood idea to have the certificatefolded open at the translation intothe local language.

The certificate can be obtainedFREE by telephoning CA on 01189391537 Make sure you request itwell in advance of your holiday as itneeds your GP’s signature and thepractice stamp. Some people havefound that when they asked the GPto sign and stamp it during aroutine appointment they weren’tcharged for this service.

A Reader’s Reply…about Travel

Gentleadhesive removal

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Lift Plus Citrus contains a fresh citrus scent for added discretion.

Available on prescription as a handy spray or disposable wipe.

For a free sample and further information on our range of stoma care products please

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Job bag: AL/1376/10.12/0.001 Date of prep: Mar 2013

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4 6 | T I D I N G S | S U M M E R 2 0 1 3

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

Q: I read with interest, the letter tonurse Julie in the spring edition ofTidings, regarding anal dischargebeing a dark colour. I have had thisfor the 4 years since I had theHartmann’s procedure and was told itwould clear up in time, which is notthe case. I cannot get to the cause ofthis, having seen my stoma nurse whosuggested it was an infection, sodoctor prescribed antibiotics, whichhasn't helped. I asked at the 6monthly review clinic I attend and thedoctor shrugged his shoulders andsaid I could extend my reviews toyearly as I was doing so well. I thencontacted the surgeon, who organiseda CT scan, this being two months ago,and I have no feedback yet. I waswondering if any of the readers havethis problem. There is no join(anastomosis) in the bowel as far as Iam aware so cannot understand this.

A: Discharge from the remaining rectalstump left following a Hartmann’sProcedure is due to mucousproduction. This is a normal functionof the bowel, with mucous acting as alubricant to allow the stool to travelsmoothly through the bowel. Whenthe output is diverted out through astoma, as in a Hartmann’s procedure,the mucous is still produced by theredundant bowel. This mucous maybe passed regularly out through theanus or it may collect over a few daysbefore being passed. Patients usuallydescribe a feeling of needing to pass astool through the anus and if they siton the toilet and push slightly amucous discharge or plug may bepassed. If patients struggle to pass thisdischarge and the feeling of fullness isuncomfortable a GlycerineSuppository can be prescribed by theGP. I hope this helps to explain why adischarge may be present even when

there is no anastomosis (join) in thebowel.

Q: I had a colostomy about 10 yearsago and I’m glad to say that the topend has worked very well. I enjoyplaying squash and fell walking sothe operation itself has had little effecton my lifestyle.

Following the operation, an abscessformed somewhere near the top ofmy rectal stump and eventually thisstarted draining through a fistula thatdischarges quite close to my anus. Iunderstand that an abscess happensin about 5% of colostomy procedures.

I manage the discharge with non-sterile dressings changed 2 or 3 timesa day and this again has little/noimpact on my lifestyle.

I am a little anxious however aboutthe existence of the abscess,whether it’s growing in size, whether itmight “burst” and whetherthere might be some new treatmentthat has evolved over the last fewyears that might deal with it.

Or should I just stop worrying about it!I’d welcome your advice.

A: It is possible to assess the size ofthe abscess and therefore its progresswith the use of scans. You do not stateif you are reviewed regularly by theconsultant but from your letter Ipresume not. If you are concerned oryou want to look at the options fortreatment you may have with regardto your abscess I would ask your GPfor advice or for them to refer you tothe hospital for a review. I hope thishelps to ease any concerns you mayhave.

Q: I have had a urostomy for sometime; recently I have had to have acolostomy. I am in quite a lot of painand have very little appetite. If I eatfruit or vegetables I just get diarrhoea– I often feel sick. Can you help?

A: You do not state why or when thestoma was fashioned and without allyour medical information it is difficultto answer the question. I wouldhowever suggest that with thesymptoms you are describing it mightbe worth a review by your GP orConsultant. Immediately followingsurgery a little discomfort and areduced appetite post operatively isnormal, however this should settleover a period of time. You do not stateif you are having issues with thepouch holding in place or not but ifyou are it may also be worth askingyour stoma care nurse for a review.

I’m sorry I can’t be of more help but afull medical review will be needed tosort this out.

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

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

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

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

Stoma Care University Hospital

of North Staffordshire

T I D I N G S | S U M M E R 2 0 1 3 | 4 7

Q: My Dad is thinking about having acolostomy to treat fecal incontinence,which is affecting him very badly. Hejust can’t face going out at all nomatter how much I coax andencourage. My question is this –would a colostomy help him?

A: This is a very big decision for yourdad and there are many options totreat faecal incontinence, includingstoma formation. I would suggest youask your dad to contact his GP andrequest a referral to a ConsultantColorectal surgeon who has aspecialist interest in treating peoplewith this condition. He really requiresinvestigating to obtain a full medicalhistory and to ascertain the actualcause of the problem, which will thendictate the treatment that is best,suited for him. It may be there is analternative treatment such asBiofeedback, Sacral Nerve Stimulation,Percutaneous Nerve Stimulation orRectal Irrigation, which may help. Thisis obviously only suitable for certainpatients and conditions and your dadmay or may not be a potentialcandidate for these options. A reviewby a specialist will help to clarify thepossibilities.

Q: I have had my colostomy quite awhile and it has helped me live abetter quality of life. However I havenoticed a change in the skin thatsurrounds my stoma it looks different,drier and a bit lumpy in places. Theskin in these areas tends to bleed alittle as well. What could be causingthis change – everything has beenfine – up until now?

A: These changes could be due toseveral things such as a change inyour skin integrity, damage due to thetype of pouch you are using or achange in size of the stoma requiringa template change. I would suggest areview by your local Stoma CareNurse to assess the cause and toprescribe the relevant treatment.Hopefully this will be a simplesolution and you will go back toenjoying a full and active lifestyleagain.

Q: I returned home from hospitalhaving only changed my bag oncemyself under supervision. My stomacare nurse had marked up my flangeswith a pen as to where I should cutthem but I’m just not sure about it atall! I tried to do one and made acomplete hash of it – I think! Are thereany guidelines available? Or couldyou give me a few tip – many thanks.I feel like a complete novice.

A: It is important to assess the size of

your stoma and therefore thenecessary template size on a regularbasis to ensure the pouch is fittingcorrectly at all times. It isrecommended that there is a 1mmgap between the stoma and thepouch but as a new ostomate this isoften difficult to assess yourself.

Did your stoma care nurse give you atemplate to draw around on thepouch, which would be the correctsize when you left hospital? Hopefullythey did, you will be able to drawaround this template to guide youwhen you are cutting the pouch. Ifyou are finding it difficult maybe yourrelatives could help to cut a few at atime for you to use. If this is notpossible then you may be able to getthem pre cut by the delivery companyif you use one. This is not ideal as astoma will change shape and sizequickly in the early days but it ispossible. The stoma care team willreview you regularly in the early daysfollowing stoma formation andtherefore they can assess the size ofthe stoma for you and change thetemplate accordingly. Once the stomahas settled you will be able to haveyour pouches pre cut so you will notneed to cut them yourself.

Q: I had my colostomy in Februarythis year and have been advised toeat low fibre foods. I have heard ofhigh fibre but not low fibre. Could youtell me a little more please? Here’shoping!

A: With a colostomy you can eat anormal healthy diet although we dosuggest that you are careful with highfibre foods in the early days. You donot state if you were given specificdietary advice for any other reason butif you were then you need to followthe advice, possibly asking forclarification from the person whosuggested a low fibre diet. It may bethat you could be referred to adietician as well if needed.

Q: I had my colostomy in Februarythis year and have been advised toeat low fibre foods. I have heard ofhigh fibre but not low fibre. Could youtell me a little more please? Here’shoping!

A: With a colostomy you can eat anormal healthy diet although we dosuggest that you are careful with highfibre foods in the early days. You donot state if you were given specificdietary advice for any other reason butif you were then you need to followthe advice, possibly asking forclarification from the person who

suggested a low fibre diet. It may bethat you could be referred to adietician as well if needed.

Q: I had a Hartmann’s procedure sixmonths ago – I’m so unhappy andfed up as my bags keep splitting andbursting. My skin around my stoma isso sore – what should I do? Would Ibe better using a two-piece product?

A: There are many reason why youcan get leaks from a stoma pouch,such as ‘pancaking’ where the faecesdo not drop into the pouch but sits atthe top or the stoma changing size,requiring a change in the templatesize. Once pouches start to leak theycan cause skin soreness, which thenprevents the pouch sticking again,leading to further problems. A reviewby your nurse will be able to helpidentify the cause and therefore beable to advise regarding the solutionand provide you with advice as toproduct usage and/or accessoryproducts. I hope this helps.

Q: I’m due to return to work shortly – Ihad my colostomy due to cancer. I amvery apprehensive about returning tomy workplace. I don’t know how I willcope. Do you come across otherpatients who feel the same way?Could you suggest any helpful hintsthat would put me at ease? If so itwould be much appreciated!

A: Many patients feel veryapprehensive when it the time comesto return to work following a cancerdiagnosis, surgery and a stomaformation. You do not say what jobyou do but some employers,especially if the job is a heavy, willallow staff to return to work on aphased return. This may be apossibility for you but you would needto speak to the Occupational Healthteam at your place of work. You canalso speak to other ostomates via theColostomy Association who will beable to chat to you about how theyfelt and managed their concerns withregard to their return to work. There isno reason why you should not be ableto return to work and lead a full andactive lifestyle with a stoma. What youare experiencing are normal feelingsand talking to people about it andgetting support from your employersshould be of help to you. Good luckand do write in to Tidings to let usknow how you get on.

Q: I had my colostomy due to Crohn’sDisease, which caused abscesses andfistulas. When I chatted to my surgeonhe suggested I go for a permanentcolostomy and mentioned ‘colostomyirrigation’ as an alternative method of

4 8 | T I D I N G S | S U M M E R 2 0 1 3

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

bowel management. This seemed veryinteresting to me however when Imentioned it to my stoma care nurseshe said that it was highly unlikely –had I known this at the outset I wouldhave opted for a temporary colostomy– I wonder if you could explain whymy stoma care nurse reacted in sucha way. Is there more to it than Iunderstand?

A: Colostomy Irrigation is a method ofcontrolling when the action from thestoma occurs. It involves using anirrigation set (water reservoir bag, softrubber cone, clear tubing, waterregulator, sleeve, ostomy belt andclips), the water reservoir bag is hungat shoulder height, gravity pushes thewater down the tubing, the flow ismonitored by the regulator, waterenters the stoma via a cone, which isinserted gently into the stomalopening. Once the allotted water isinserted the cone is removed from thestoma and the water and the bowelcontents are expelled into the toilet viathe sleeve. Colostomy Irrigation isusually performed daily to start withbut many people are able to changethis to alternate days. Your stoma carenurse may be reluctant to undertakeirrigation if you have active Crohn’sdisease as this could cause problemswith the Crohn’s causing it to flare up.You may be able to use somethingcalled a Plug, which is a method ofcontrolling the output. It involvesinserting the plug into the stomalorifice and leaving it in place for up to12 hours. You do need to do thisunder the guidance of your stoma carenurse who will advise as to suitabilityand also on how to gradually increasethe length of time the plug is left inplace, as it needs to be introducedslowly. The plug is worn for 12 hoursand a pouch is worn for the remainderof the 24 hour period, usually at night.This enables you to prevent the bowelactivating during the day but allows itto work at night. The plug is notsuitable for everyone and again youneed to speak to your stoma carenurse who knows your individualcircumstances.

Q: I am in my early 40’s and havebeen told I will require a colostomy. Ihave read so much information – I’mreally undecided. What should I donext?

A: It would be of great value to goand meet with your stoma care nurseprior to your surgery to discuss indepth the surgery and resulting stomaformation. She will be able to use avariety of methods, books, imitation

stomas, pouches, videos anddiagrams, to explain the surgery andresulting stoma and also prepare youfor life with a stoma by training you tochange a stoma bag before surgery.She will also be able to identifysuitable websites for you to access andintroduce you to people who havealready undergone the surgery. Thiscan be extremely useful as, althoughthey will not be able to answer themedical questions which are for theconsultant and stoma care nurse, theywill be able to talk to you from apatients perspective which is veryimportant. I do this with my patientsand they report it to have beenextremely useful in helping them tofully understand what and why thingsare happening. I hope you find thishelpful.

Q: I am 86 years old and had mycolostomy in September 2009. I havemanaged quite well and have dealtwith the obvious problems. Howeverabout a year ago I developed aparastomal hernia (about the size ofan orange but it has grown rapidlyand is now approx. 9” in diameter). Itgives me no pain, and little discomfortand I can cope with its appearance.However, I now have to wear asupport garment, which is quiteuncomfortable – I can’t helpwondering if I am wearing it correctly.Any advice or help would be greatlyreceived. Many thanks.

A: You do not say if you weremeasured for your support garment orif it was one you obtained yourself. Aproperly measured, correctly fittingabdominal support should improvethings for you. If you were notmeasured for the support I wouldsuggest you contact your local stomacare nurse who will be able to arrangethis for you. If you were measured forthe support but still find ituncomfortable I would suggest youcontact the company or departmentwho measured you for it to arrange fora review and a further demonstrationon how to wear it correctly. I hope thishelps and you are able to wear thesupport in the future to reduce thediscomfort you are getting.

What kind of stoma do you have?

When food leaves the stomach it en-ters the small intestine, a long coiledtube about twenty feet long. The lastpart of the small intestine is calledthe ileum. If the ileum is brought outthrough the abdomen to form astoma (ostomy), this is called anileostomy.

Five facts about an ileostomy• The name comes from combining

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

without passing through the largeintestine (colon).

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

– the consistency of porridge orthick soup.

• A drainable bag is used and emp-tied four or five times a day.

Normally digested food passes fromthe small intestine directly into thelarge intestine or colon. If the colonis brought out through the abdomento form a stoma (ostomy) this iscalled 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

as necessary.

The above applies in most cases, butthere can be exceptions For exam-ple, sometimes it may be easier for asurgeon to create a colostomy onthe right hand side. The output fromsome colostomies may be fairly liq-uid particularly if only a smallamount of colon remains. Thereforesome colostomates may prefer touse a drainable bag.

Have you got a medical question or a query

about stoma care managementfor Julie?

If so write in and tell us:

The EditorColostomy Association

Enterprise House95 London StreetReading RG1 4QA

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

Editors Comment

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

Hi everyone, my name is Nicola. Ihave a colostomy. I was given a bagseven months ago as a result ofbowel cancer. The surgeon had toldme prior to my operation that Imight have to have a bag as a resultof the operation he and his teamwere going to perform to remove thecancer. And he was right. He alsosaid that I might be able to have areversal, so fingers crossed.

I had chemo after my operation andfound that caused my output to bevery loose, I had a lot of trouble withleaks and then soreness around mystoma – I found it was impossible toget a bag to stay on for very long. Myskin was red and very sore. I tried tocontact my stoma care nurse butfound it was very difficult to get holdof her or anyone in the department.They never seemed to be there andthey never returned my calls.Eventually I did get through and got anappointment and was givensomething for my skin – some sort ofcream. It helped a little but when Iapplied it to my skin it never seemedto be completely absorbed. Certainlynot enough to leave my skin dry, readyfor my next bag. So with the bag notsticking on properly, I ended up withmore leakage and my skin not healingproperly.

In desperation one evening, I wentonto the Internet and came across the

Colostomy Association. I noticed theyhad a ‘Closed’ Facebook Group. Ifound it and asked to join. That was at8pm. I was accepted and received awarm welcome. I told them what theproblem was and within an hour I hada huge list of remedies that otherpeople had tried and that worked fordealing with sore skin. It wasincredible to realise that there wereothers out there who understood andwho had been and were goingthrough the same thing!

I couldn’t go out to the shops at thattime of night but did have someCalamine lotion in the cupboard leftover from when my son had someterrible midge bites and so I thoughtI’d try this. Someone hadrecommended it. You put on a layer ofCalamine lotion and let it dry. Thenyou apply further layers until you havesealed the skin. The fact that theCalamine lotion sets means you canget a bag to stick to it. I got a bag tostick on for 8 hours doing this, beforethis I was only getting a few hours. Thegroup members also said to makesure that the hole for the stoma wascut correctly around the stoma leavinga 1mm gap so as not to restrict it butenough to reduce leakage. The holesthat I had been cutting were a bit toobig. Someone also said I could ask thesupply company to cut the holes forme, all part of the service apparently.By the end of a week my skin hadstarted to calm down. I kept goingwith the Calamine lotion. Actually I ran out and had to buy another bottle.

Now thanks to my Facebook friends, Ihave been able to get the attention ofthe stoma nurse - they encouraged meto write a letter - and I have some veryhandy remedies for sore skin. I am notsure I’d ever try the one where you putegg white on the skin but someoneswears by it! My supply company arecutting holes in the flanges to thecorrect size, the size that my stomacare nurse measured me when I went

to see her last week. I still hate thelook of my stoma but I am beginningto get the hang of it and the leaks

have reduced. This is partly due to thefact that my chemo has finished andso I am not nearly as loose as I was.

I have an appointment with thesurgeon in two months to discussreversal. I wonder what he will say.The CA Facebook group have given mequite an insight into ‘living with astoma and colostomy’, and reversal.Several group members have beenreversed. For some it is a success, forothers, where they have to visit thelavatory many times a day and take alot of Imodium it’s not so great. I willtake the advice of the surgeon, seewhat she has to say.

Many thanks to the CA FacebookGroup. They are a great bunch. I havemade many new friends - they’realways there when you need them -and I am looking forward to the nextgroup meeting to get to know some of them in person!

Joining the group is easy...put Colostomy Associationinto your Facebook searchbar, click on Group and clickon ‘Ask to join’ where youwill be met with a very warmwelcome!

S P E C I A L I N T E R E S T C A FA C E B O O K

CA ‘Closed’ FACEBOOK Group...Nicola...a case history

“Now thanks to my Facebook friends, I havebeen able to get theattention of the stoma carenurse - they encouraged meto write a letter - and I have some very handyremedies for sore skin”.

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

Dear Editor

I was wondering if you would haveany advice for me. I am a formercolostomate and receive yourmagazine which is really interestingreading and I am really amazed atthe courage of some of the people. I will detail my history below.

In January 2010 I had back surgeryfour days later unfortunately I had aperforated colon and peritonitis andwas apparently very seriously ill, thisresulted in me having a Hartmann’sprocedure, as you can imagine ahuge shock to the system, afterwhich I was in hospital for six weeks.My recovery was very slow and I hadthree procedures to re-fashion thecolostomy as it was not functioningcorrectly, I understand that becausethe operation was done so quickly asan emergency there was no time tomark out a proper site etc. Eventuallyin November 2010 I had a reversal,which thankfully was successful withthe exception of an abscess thatformed on the site on Christmas Eve2010 and had to be excised.

All was going reasonably smoothlyafter that but I then developed fourmassive hernias which eventuallywere operated on in May 2011resulting in a mesh being insertedover the whole of my abdomen.

Although being successful inrestraining the hernias from re-appearing this is extremelyuncomfortable most of the time andover the last six months I have hadsteroid and anaesthetic injections totry and relieve the pain, which hashelped.

That being my recent medical historyin connection with my colon I cannotsay that I feel 100% due to the factthat I still have diverticulitis, I am still

suffering flare ups with diarrhoea onmany occasions, at the momentthese seem to be in the middle ofthe night, which is causing sleepdisturbance therefore making me feelreally tired the next day. I still sufferfrom left sided lower abdomen painon quite a few occasions.

I was discharged some months agofrom the gastroenterologydepartment and was wonderingwhether I should be re-referred ormaybe speak to the stoma carenurses who are really well informed,or if you have any words of wisdomfor me. I have been on a dairy freediet now for about a year and onlyhave milk occasionally in tea andhave found this helps. I cannot reallyget to the bottom of why these flareups occur, it could be if I have eatentoo much, or it might be if I havehardly eaten, nothing seems to makesense. I wonder if I just have to putup with it and get on with it. Mysurgeon did say at one time if thingsgot really unbearable that he wouldbe prepared to give me a permanentcolostomy, but quite honestly thingsreally are not that bad, just anuisance.

Since my operations and all theproblems following I have lost a lot ofmy confidence and I am alwaysworried about going out should Ineed a toilet quickly and panic if Ihave to go anyway that I do notknow, I am gradually overcomingthis, but it is a real problem.

Yours in anticipation,

J.S

Dear Editor

I was delighted to read in the Springedition of Tidings magazine (‘Len'sStory’) that the bowel cancerscreening test worked for him but Ithink it's important to point out thatthis test does not always work. I haveheard of many people having falsepositive results but I think I may be inthe minority as I received a falsenegative result and shortly afterwards(after a minimal amount of bleedingwhich I could easily have dismissedas piles) I was told that I had bowelcancer. I am now left with apermanent colostomy and feel verylet down by the screening process.My advice would be by all meanstake the test if you wish but also takethe results with a pinch of salt.

Best regards,

I.L

Dear Editor

Having just received the spring issueof Tidings I must advise that I haverecently undergone a successfulcolostomy reversal and as such nolonger have a need to receive thequarterly magazine. However I wouldlike to thank you and the team foryour dedication in supportingcolostomates, and to let you know Ifound the magazine not onlyinformative, but of a great comfortwhen reading the stories therein andrealising that I was not alone in thewide range of mixed emotionsresulting from having a bag.

I don't know if my experience wouldbe of any worth to other people butjust in case here it is...

Following emergency surgery for ablocked bowel (caused by bowel

C H AT B A C K

Readers’ writesWe want to hear from you...learn about your experiences, understand yourconcerns, read your hints and tips...so write, email or phone the Editor today!

cancer) four years ago I underwentan attempted colostomy reversal of aHartmann’s procedure at Scunthorpethirty months ago, but this wasaborted because of a large amount ofscar tissue around the originaloperation site. When I was cominground in the recovery room, one ofthe theatre team doctors suggestedthe surgeon had been keen toproceed but the rest of the team haddissuaded her from going aheadbecause of the risks associated withthe scar tissue.

For the next two years I wasconstantly told in hospital follow- upvisits and by my GP that there was no possibility of reversal, howeverthis niggling doubt had been put inmy mind by the comments made inthe recovery room and eventually Iasked for a second opinion. I wasreferred to Hull Castle Hill hospitaland within six weeks I had seen theconsultant there (Miss O'Grady) who,after reviewing my file, said she couldsee no reason why not to try again.Within a further six weeks I had mysurgery, this time undergoing asuccessful reversal, being fullyreconnected. Six weeks later I wasback at work and have to say that(touch wood) I am delighted with theresult.The down side is I don't have agreat deal of rectum left whichmeans I don't have a lot of storagespace and need to visit the toiletaround 4 to 6 times a day, but I havegood control and mostly can hold itand go when it's convenient (forgivethe pun) for me rather than as amatter of urgency. I don't know if anyother of your readers have had asimilar experience to me, and havenot pushed for a second opinion.However in my case asking for asecond opinion has been a majorturning point in my life.

With best regards, M.B

Dear Editor

I have been a member of theColostomy Association for the lastfew years and I have sent a donationever since to support this greatassociation and another donation ison it's way!

I have wanted to send an email toyou to say I think the 'TidingsMagazine' is fantastic!! I have a had aColostomy for three and a half yearsand a Urostomy for five years andboth are permanent and both carriedout in emergency circumstances hathas left me traumatised. I have ShortBowel Syndrome with my colostomyand everyday is a challenge and thelarge amounts of medications to taketo control this on a daily basis.

I am a very private person and have a great network of support from myloving, family, friends and a greatStoma Care Nurse. My heart goes outto all the courageous people whowrite their stories and one day I hopeto share my experiences with youand the magazine.

I have found it very, very hard comingto terms with both my 'Little Friends'but to read the stories in the 'TidingsMagazine' is an 'Inspiration!' Peoplecope in so many different ways.

Thanks once again for this great andinspirational magazine and for takingthe time to read my email.

Kind Regards,

T.W

From Ed:Thank you for your kind words whichI have shared with the Editorial team.From everyone involved with Tidingswe encourage you to share your storyas Paul says on page 19 –‘if this helps one person I'll be a veryhappy man’.

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

Before acting on suggestions fromother ostomates you are advised to check with a doctor or stoma

care nurse that this course of action is suitable for you.

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

print them or we may hold themover 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 thenext issue of Tidings magazine

simply drop us a line

via email:editor@colostomyassociation.org.uk

or write to:The Editor

Colostomy AssociationEnterprise House95 London StreetReading RG1 4QA

Look out for our Readers’ Button

to see where readershave contributed

to Tidings

Readers’PANEL

contributor

C H AT B A C K

Readers’ writes

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

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

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

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

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

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

Come along and enjoy theColostomy Association Patient OpenDay Event in Reading on Saturday20th July 2013 – meet your Presidentand Trustees, the Office Team andFellow ostomates…help CA to makethis event a great success – one toremember!

Building on the previous ColostomyAssociation Patient Open Days inSwansea, Gaydon, Warwickshire andLeeds. The Colostomy Association isdelighted to announce that this year’sOpen Day event will take place at theRoyal Berkshire Conference Centre,Madejski Stadium Complex, Reading,Berkshire RG2 0FL on Saturday 20thJuly 2013.(http://www.rbcc.org.uk/location.php).

The event will introduce attendees tothe work of the charity – the changingface of stoma care and the innovativeworld of stoma care appliances andadditional products. The focus –reaching out, building awareness andmoving the Colostomy Associationforward.

Ultimately, attendees will take awaymuch by attending this informationdriven event. Improved knowledge oftheir stoma and its care, a greaterawareness of stoma care appliancesand additional products plus anincrease in confidence and a sense ofbelonging to a charity whichencourages, supports and reassures –people ‘living with a stoma andcolostomy’. Stoma care companies andsuppliers already signed up to exhibitinclude AAH Pharmaceuticals (Medi),AmCare, B.Braun, Bullens Healthcare,ConvaTec, Fittleworth, iMedicare,OstoMart, Opus/Alliance Healthcare,

Pelican Healthcare, Suportx andWilkinson Healthcare. Presentations onthe day will reflect the positives andpractical issues associated with ‘livingwith a stoma and colostomy’.

The Colostomy Association will beinviting VIP guests, sister charities – theIA, UA and Breakaway – as well asother local support groups.

The event will open at 9.30 am, givingtime for registration – tea/coffee andbiscuits in Windsor Lounge (Exhibitionarea). The presentations will take placein the Princess Suite. There will be onebreak - for comfort during the morningand then lunch (on a first come firstserved basis) – attendees will beencouraged to view manufacturers andsuppliers stands, attend workshops andSCN/Patient One to One’s in theafternoon – an appointment systemwill be in place on a first come firstserve basis.

Book Today!: Please email your name,contact details and how many peoplewill be attending tocass@colostomyassociation.org.ukor contact Susan Hale General Manageron: 0118 939 1537

What you can expect…Brief Outline of Agenda*...

Registration: From 9:30am(Includes Tea/Coffee/Biscuits)

• Exhibitors stands will be availablethroughout the event – allrefreshments will be served in theWindsor Lounge (Exhibition Area) on a first come first served basis.

Morning: 10.30 – Welcome• Introduction• About the CA raising awareness• Patient story• Stoma Care Overview• Awards Ceremony

Lunch: 12.45pm – 1.30pm

Open session: from 1.30pm onwards

Exhibition Area• Exhibitors stands

Patient One to One appointments • Stoma care nurses available for

attendees to chat with. CA SpecialistDiscussion/Workshop topics

• Irrigation• Exercise and well-being

• Insurance and travel• Parastomal Hernia Workshop

Close: 4:00pm

* Agenda may be subject to change

Accommodation: A hotel is on site ifaccommodation is required – TheMadejski Millennium Hotel – ReadingFootball Club – Stadium Complex.Reduced rates are offered for Friday19th July and Saturday 20th July –Double room/single occupancy/B&B =£55.00 + VAT. Double room/doubleoccupancy/B&B = £65.00+ VAT. Pleasequote Col: 190713. Contact the HotelReservations Team on: 0118 925 3817.(Note: Cancellation of room/s must bebefore 2pm on Friday 19th July/Saturday 20th July 2013).

By Car: Sat Nav Postal Code - RG2 0FLFrom M4 Junction 11, take the A33 toReading through the traffic lights.Straight ahead at the mini roundabout,at the second roundabout turn left, atthe next round about and take thesecond turning up the hill towards thestadium. Follow the road around thestadium over the two mini roundaboutsand pass the hotel entrance on yourright. Car parking is available in theblue car park in front of the FootballMega Store, entrance to ConferenceCentre to the right of the Football ClubMega Store.

By train to Reading, then by Taxi:Once arrived at Reading Central Station,leave the station by the town side exitthe taxi rank is located opposite theStation and in Garrard Street.

Madejski Stadium Park and Ride:Greenwave Buses – Service No 50This bus service operates every 10minutes from the Old Bus Station inReading (just a short distance fromReading Railway Station) to and fromMadejski Stadium/Royal BerkshireConference Centre.Reading buses Customer Services Team0118 959 4000 - Mondays to Friday,9.00am to 5.00pmhttp://www.reading-travelinfo.co.uk/park-and-ride/madejski-stadium.aspx

Bus faresCash fares (exact change required):• Adult single £1.80• Adult return £3• Child single (aged 5-18) £1• Child return (aged 5-18) £1.50

F E AT U R E C O L O S TO M Y A S S O C I AT I O N PAT I E N T O P E N D AY E V E N T 2 0 1 3

Colostomy Association Patient Open DayEvent in Reading on Saturday 20th July 2013

5 4 | T I D I N G S | S U M M E R 2 0 1 3

N O T E B O O K H E L P F U L O S TO M Y S U P P O R T G R O U P S & O R G A N I S AT I O N S

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

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

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

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

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

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

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

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

• Gay & Lesbian Ostomates (GLO)(The United Ostomy Association in1982 established the Gay and LesbianConcerns Committee, now called Gayand Lesbian Ostomates (GLO)Network.)Web: www.glo-uoaa.org

• Ostomy LifestyleTel: 0118 324 0069Email: admin@ostomylifestyle.orgWeb: www.ostomylifestyle.org

Stoma Care PatientOpen Day eventdates...

For a comprehensive list of Patient Open Daysevents...visit the CA website.Details can be found onPage 6. Listings areupdated throughout year.

If you are not onlinecontact CA on:0118 939 1537 to findout if there is an eventnear you.

Don’t forget the CAPatient Open DaySaturday 20th July!

Sash belts are available on prescription for a Colostomy, Ileostomy or Urostomy andsuitable for both male and female.

All belts are custom made from information given on the enclosed Order Form. A hole will be cut into the belt flange to fit the pouch you normally use.

No fittings are required. Belts are processed and mailed within two working days.

For further information call Freephone : 0800 389 3111 or visit our website: www.sashstomabelts.com

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

This lightweight unobtrusive belt is designed to helpeliminate leakage problems by holding the adhesivesection of the pouch against the body during allactivities.

The belt also gives added confidence and securityagainst the pouch becoming detached and will help to support the 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 ring that fits between the bag andthe adhesive section of the pouch.

“the ring of confidence”

• 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 parastomal 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. HB102

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

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

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

C O N N E C T I O N S

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

Designed by Ursula Naish

For further information please contact:Ursula Naish, 9 Oast Meadow, Willesborough, Ashford, Kent TN24 0AS Tel: 01233 640 863 Email: ursulanaish620@btinternet.com

Ursula Naish designs and producespouch covers and waterproof mat-tress and wheelchair covers.

As Secretary of the UA Kent Branchshe offers this service to raisefunds for her local group.

If you have a product to sell, an event to advertise or a message tocommunicate, you can place a smalladvert for as little as £20. Stoma carenurses...if you would like to promoteyour Stoma Care Department, itsservices and events...for FREE...Then just get in touch...contact:editor@colostomyassociation.org.uk

Mid Devon Ostomy GroupAdvance notice

The Boniface Centre, Crediton isbooked for meetings for CreditonSupport Group the 3rd Saturday 2-4 every as follows:-

• July 20th 2013

• October 19th 2013

Contact Janice Parkyn via CA at cass@colostomyassociation.org.uk

Royal Derby HospitalStoma Care Nurses Open Day...

Thursday 24th Oct 2013 10.00am till 2.30pm

Venue: The Spot, Wilmot St West, Derby DE1 2JW

All enquiries to:Stoma Care Dept 01332 787465

Holidays...Beesands – DevonHoliday ApartmentSelf–Catering Accommodation(within fellow colostomates home)

• Wonderful sea views• Sleeps 2• Beesands, Kingsbridge Devon• £160 per week

Contact: Mrs J SealTel: 01548 581 163Mob: 07968 370498

5 6 | T I D I N G S | S U M M E R 2 0 1 3

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

The Colostomy Association is an independent charityfinanced solely by donations. Your help and support todayis more important than ever in this changing world...Our findings show there are approximately 60,000 colostomates living in theUK and with over 6,400 permanent colostomy operations being performed each year - the CA needs to be here for everyone ‘living with a colostomy’.

Expert at Living with a ColostomySupport

Reassurance & Practical Advice

for peopleliving with a stoma and

colostomy in the UK

stronger together...forward together

• A telephone helpline 0800 3284257 manned 24/7 365 days a year by fully trained volunteersexperienced in living with acolostomy.

• An Outreach ProgrammeCA’s own Patient Open Day event for ostomates. Come and visit usit’s a full day packed withinformation and friendly faces.

• Patient Advisory literature, writtenby colostomates and health careprofessionals.

• A quarterly magazine 'Tidings’especially written by colostomatesfor colostomates, their families andtheir carers.

• Over one hundred contactvolunteers cover the UK fullytrained and experienced, (who areostomates) these dedicatedindividuals bring a human touch.A volunteer can discuss emotionalor practical problems with youand be matched to a patient by age,sex, location or by problem

• Patient visiting a volunteer can atthe request of a stoma care nursevisit a patient/s before theircolostomy surgery, and afterwardsin hospital. Home visits can also bearranged.

• CA attendance at organised stomacare nurses 'open days' aroundthe UK – that you can visit andlearn more about your stoma, in a

friendly atmosphere and discussany problems.

• CA attendance at manufacturers' and suppliers', ‘open days’ andexhibitions. These allow you tocome and see us and we canupdate you on stoma care products,accessories and services via‘Tidings’. Display our literature andchat to ostomates.

• A voice for your opinions atongoing consultations with theNational Health Service keepingyou informed of issues that mayaffect you.

Here’s how YOUR donations help CA make a difference...

Donate and make a difference to CA..today! Here’s how...simply dial 0118 939 1537 to donateover the telephone • visit www.colostomyassociation.org.uk and donate online make a regulardonation via standing order • make a single donation of £15 or more • donate online at justgiving • donate a gift in memory • leave CA a legacy in your will – THANK YOU!

contact CA: telephone: 0118 939 1537

email: cass@colostomyassociation.org.uk

T I D I N G S | S U M M E R 2 0 1 3 | 5 7

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

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Regular donation

Please use this form to make a Regular donation by Banker’s Standing Order. Simply complete this form andreturn by post to the Colostomy Association, Enterprise House, 95 London Street, Reading, Berks RG1 4QA.Telephone: 0118 939 1537 if you have any queries.

My Details: Title: Name: Surname:

Address:

Postcode:

Telephone (home): Mobile:

Email:

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

Your ongoing support means we can plan our services with confidence knowing when donations will be comingin – and reach out to more colostomates their families and their carers with support, reassurance and practicaladvice. With your help we really can and do make a difference - thank you.

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

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

Stoma Type: (Please tick) Colostomy Ileostomy Urostomy

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

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

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

Signature: Date: / / 2013

Thank you for your gift

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

To the Manager: (Bank or Building Society)

Bank Address: Postcode:

Name(s) of Account holder(s):

Account number: Sort code:

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

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

thereafter until further notice. *Please state your donation amount in words:

(Please cancel any previous standing order in favour of this beneficiary).

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

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

Name: (IN CAPITALS)

Signature: Date: / / 2013

Thank you for your support

#

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

5 8 | T I D I N G S | S U M M E R 2 0 1 3

Thank you for your support

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

#

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

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Single donation

Please use this form to make a Single donation to the Colostomy Association. Simply complete this form andreturn by post to the Colostomy Association, Enterprise House, 95 London Street, Reading, Berks RG1 4QA.Telephone: 0118 939 1537 if you have any queries.

My Details: Title: Name: Surname:

Address:

Postcode:

Telephone (home): Mobile:

Email:

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

Your single donation/gift makes a real difference to the work of the charity – CA can reach out to morecolostomates their families and their carers with support, reassurance and practical advice. With your help wereally can change lives - thank you.

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

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

Stoma Type: (Please tick) Colostomy Ileostomy Urostomy

Single donation: I wish to make a single donation to the Colostomy Association in support of the charity andits ongoing work. I have completed the Form below (Please tick.)

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

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

Signature: Date: / / 2013

Thank you for your gift

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

(Please tick.) Yes I would like to make a single donation/gift of £15 £20 £25 £50 or

other amount (please state) £ to the Colostomy Association

I enclose my cheque/postal order form made payable to the C.A. Ltd and attach the completed Donation

Form in its entirety.

Yes, I require a receipt (Please tick.)

Single donations from individuals, groups and fundraising events are very welcomeand greatly appreciated. So please keep them coming, no matter how small. Just£15.00 (or more) will help cover the cost of all our patient services.

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

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

Support Groups are places where people can share personal stories, expressemotions, and be heard in an atmosphere of acceptance, understanding, andencouragement. Participants share information and resources. By helpingothers, people in a support group strengthen and empower themselves.

Janice Parkyn writes....about the Mid Devon Ostomy Group –a new group for ostomates in the West Country!

Janice writes: I have now had myfourth support group meeting! Idecided to set up an informal supportgroup in Crediton, Devon with helpfrom CA and Jackie Dudley – Trusteeand Volunteer and support fromOstomy Lifestyle’s course – ‘Nuts &Bolts of running a Support Group’.

It took a little while to find a venue butI finally found a local hall that wasavailable on a Saturday afternoon,which was great news! I devised aposter with an eye-catching logo andCA sent invites out for me to localmembers in the Devon area and SamRobertson – stoma care nurse at theRoyal Devon and Exeter Hospital didthe same. I put up posters in localLibraries and Doctor’s surgeries andasked my local stoma care companyreps if they would be interested incoming along to help and cover thecost of the hall and refreshments via a donation – the response has beenreally good.

At my first meeting in June last year,the weather played havoc, we hadtorrential down pours but people stillcame! The theme ‘chocolate’, quizzes,facts and fun! Linda Matthews fromSalts Healthcare, Diane Kay fromPelican Healthcare and Kim Hill fromHollister came along. My next meetingwas in September yet another wet daythis time with long traffic delays! I hadcontacted people who came to thefirst meeting and advertised againlocally we all had a good afternoon –Jonathan Tait from Salts Healthcare,Gareth Carruthers from Peak Medicaland Moya Westcott from OstoMARTcame along and Tracy Inch –Community Stoma Care Nurse fromColoplast.

I decided to book the hall in advancefor 2013 – every quarter – January,April, July and October! My nextmeeting was January 20th – we werein the grip of a wintery cold snap thatbrought snow for most with someexceptions such as Crediton. ClaireHills from CliniMed was the only repthat made it through! All morning Ireceived calls saying: ‘sorry, we can'tget to Crediton due to the snow’. Ithought to myself no one’s going tomake it! But as it turned out a smallgroup of people made it through andwe had some fun and quizzes!

As well as advertising in Tidings, andall my usual places! I contacted RadioDevon who mentioned the Aprilmeeting on their Sunday requestshow. I have just had my fourthmeeting, we had a talk from the BlueCross, which was very interesting,everyone agreed to donate the moneyraised from the raffle! We werepleased to give the Blue Cross £36.00.This time my son came and helpedwith the teas and the washing up!

I would just like to say how rewardingit is when people come to eachmeeting! A big thank you Pat, Marleneand Angela who likes to do the raffle.Thank you also to Cyril Smith who setsup a table for the ColostomyAssociation displaying leaflets andTidings Magazines. We do not haveany membership fees we just ask fordonations towards the food once thehall fee is covered and raffle prizes!

The meetings are for anyone with anytype of stoma and family members orfriends are always welcome. perhapsI’ll see you there at the next one!

England - South West

Avon:B.O.S.S Bristol Ostomy SelfSupport Contact: Christina 01179 075326Joyce 01179 558236Rob 01179 668021

Cornwall:Hayle’s Angels Stoma SupportGroupContact: Sue Hatton01326 340058Ostomist and Carers SupportGroupContact: Christine Davey 01208 831471OptimistsContact: Sue Hatton 01326 340058

Devon:Mid Devon Ostomy GroupContact: Janice Parkyn01363 776417Devon IAContact: Margaret Bond01392 447374Devon Stoma Support GroupContact: Donna Ashbrook01626 854862

Dorset:CUPID Colostomy, Urostomy,Pouch & Ileostomy of Dorset -West DorsetContact: Colin Clare01305 853 288

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

Regional Stoma Support Focus...

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

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...

Information about stoma support groups is regularly updated both in Tidings and online visit: www.colostomyassociation.org.uk. If you know of a stoma support group near you not mentioned in our listings please let us know...if you are interested in setting up a group the CA can help. Contact the CA office: 0118 939 1537or E-mail: cass@colostomyassociation.org.uk

Scotland

Midlothian:Maggie’s Edinburgh Contact: 0131 537 3131

West Lothian:GOSHContact: Alex Topping 01501 772154

Glasgow:Glasgow Stoma Support GroupContact: Maureen O’Donnel 01236 436479

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 - North

Cheshire:Cestrian Support Group Contact: David Burgham 01244310461Stockport Support GroupContact: Angela Simpson 0161 419 5059

TOMAS (The Ostomates of Maccles-field 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:Bishop Auckland Stoma Care GroupContact: Betty 01388 814535 Jen 01325 311266 orMaureen 01388 818267

Cumbria:Grange Cancer Support GroupContact: Marie 015395 33279

Derbyshire:Stockport Support GroupContact: Angela Simpson0161 419 5059

Lancashire:Oldham Stoma SupportContact: June Wilde 0161 312 5538Tameside OstomisticlesContact: Paul Seavers 0777 1359046Trafford Bowel CareContact: Jackie Carey (Secretary) 01617489 659 Doreen 0161 9627 818John 0161 7484 655

Merseyside:Crosby Support Group Contact: Stoma Care Nurse0151 529 2842Aintree Stoma SupportContact: Stoma Care Nurse0151 529 2842I.C.U.P.SContact: Stoma Care Nurse0151 604 7399

Northumberland:Northumberland Cancer SupportContact: Mary Miller 01434 622 392Jim & Dee - 01434 230 398

Tyneside:NHS Molineaux CentreContact: Stoma Care Nurse0191 2380011Royal Victoria Infirmary Support GroupContact: Gordon Weatherburn 0191 234 1109

Yorkshire:Airedale Stoma SupportContact: Jenny Shaw 01535 652516or Sue Hall 01535 210483Behind You (Calderdale& HuddersfieldBowel Cancer Support Group)Contact: Stoma Care Nurse01484 355062Barnsley-Bottoms Up Stoma Support GroupContact: Stoma Nurses 01226432528 or Celia Utley (Chairman)01226 284262

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CROPS (Colo-rectal ostomy & internalpouch support)Contact: Gloria 0114 2879503 Dewsbury & District OstomyContact: Janet/Eileen 0844 8118110Rotherham Ostomates Caring SupportContact: Karen 0788 0575758Scarborough Stoma SupportContact: Sister Jean Campbell 01723342388 Amanda Rowe 01723 342446The Hull and East Riding ColostomySupport GroupContact: Pete Smith 07989 565335and Pete Rennard 01482 793966

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

England - Central

Buckinghamshire:Milton Keynes Stoma AssociationContact: Mrs Joanne Dixon 01908318262 or 07502 226702

Leicestershire:Kirby Ostomy Support GroupColostomy, Ileostomy & Urostomy in LeicestershireContact: Janet 0116 239 2844

Nottinghamshire:Nottingham Colostomy, Ileostomy &Urostomy Support GroupContact: Rosemary Brierley 0115 982 6691Nottingham Stoma Support Contact: Mrs B Heath 0115 966 3073North Notts Stoma Support Group(Sutton-in-Ashfield) Contact: Tore and Nicky Norman01773 715460

Shropshire:Oswestry Stoma Support groupContact: Irene Constable 01691 238357

Staffordshire:OutlookContact: Ernie Hulme 01782 324441Moira Hammond 01782 627551

Worcestershire:Kidderminster & District CollossusSupport GroupContact: Brendon Drew01299 400843

West Midlands:Coventry Stoma SupportContact: Martin Robbins 07947 385643Newhall Stoma Support GroupContact: Sarah French 07773 39623602476402616

England - East

Bedfordshire:Saturday Social ClubContact: Karen Richards 01234 792278

Cambridgeshire:OstomisticsContact: Alan Wright 01354 653290/07836 661102

Essex:ConnectContact: Lin Hart 01279 505273 M.E.S.S (Mid Essex Stoma Support)Contact: Paul Foulger 01245 224374Jeanette Johnson 01376 511862N.E.S.S (North Essex Stoma Support)Contact: Mr Bill Hatch (Chairman)01255 503688Brian Waller (Secretary) 01206 540449Optimistic OstomatesContact: Angela Taylor/Carol Booth01702 385509 or 01702 385510 STEPS Contact: Jackie Coleman 01268 451937Redbridge Ostomists ClubContact: Stoma Nurses: Chris/Lisa020 8970 8321

Hertfordshire:ConnectContact: Lin Hart 01279505273ColoniseContact: Anastasia01727 760 981Hertford Stoma Support GroupContact: Ralda 01992 535311Stevenage OstomisticsContact: Alfred Levy 01767 316958

Lincolnshire:Friends East Coast Support GroupContact: Betty 01205 724120/Sheila01205 364493 Grantham Support GroupContact: Bobbie/Amanda: 01476 464822

Email: grantham.colorectal@ulh.nhsMarch GroupContact: Maureen 01754 874 485 Sutton Bridge and Long Sutton Os-tomy GroupContact: 01406 351617

Norfolk:Kings Lynn Ostomy Friendship SupportGroup Contact: 01533 691370/768271 or01533 775698StarsContact: Anne Browne 01603 661751

Suffolk:East Suffolk Ostomy GroupContact: Marion Fisher 01473 311204James Pagett Ostomy Support GroupContact: Sandra Hutchings01502 585955West Suffolk & District Stoma GroupContact: Jessica Pitt 01638 515525

England - South East

Berkshire:EBOC (East Berkshire Ostomy Club -Bracknell)Contact: Jackie Dudley 01344 426652WBOC (West Berkshire Ostomy Club -Reading)Contact: Jackie Dudley 01344 426652

Hampshire:COGS (Colostomy Only SupportGroup)Contact: Sarah Anderson07907 820125Solent Ostomates Support GroupContact: Carole Summer07527 707069Solent Ostomates Support Group(New Forest Branch)Contact: Carole Summer07527 707069Wessex Urology Support GroupContact: David Morris 02392 361048

Isle of Wight:OptimisticsContact: Stoma Nurse Natalie SayerSCN 01983 534009Semi Colon Group Isle of WightContact: Tony Crowson Chairman01983 559326

Kent:Ashford Stoma Support GroupContact: Ron Huckstep 07941 310681

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

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Margaret Webb 01233 628807Atoms Support GroupContact: Maria Culleton SCN01227 769679 or 07827997424 Dover & District Stoma SupportContact: Maria Culleton SCN01227 769679Dover Stoma Friends Group SupportContact: Julie Bell & Ros Marshall07771345701/01233616646Maidstone Stoma Support GroupContact: Judy or Kirsty01622 224305Medway Ostomy Group Support(MOGS) Contact: Val Solly or Helen or Tracey07773 605534Thanet Stoma Buddies Support GroupContact: Phil (Secretary)01843 587769

London:Homerton Hospital Bowel & StomaSupport GroupContact: Toni Johnson 0208 510 7599Angela Davy 0208 510 5318Shepherd Bush Stoma Support Group Contact: Roslyn 0208 354 0121 or Jackie 0208 740 4790South Woodford Support GroupContact: Christina 0208 5356563Surrey & South London Bowel CancerSupport GroupContact: Sue Berry: 01737 553134 orJohn Amos: 0208 668 0796

Middlesex:Inside OutContact: Bob (Chairman) 02084284242 Sarah Varma 0208 2354110 Semi-Colon ClubContact: Pat Black/Katheryn Foskett01895 279391

Oxfordshire:Oxfordshire Ostomy FellowshipContact: Pat Longworth01235 524163

Surrey:Epsom & District Stoma SupportGroupContact: Sheena 01372 735925

Sussex:(SAS) Brighton & District Stoma Caresupport Contact: Sylvia Bottomley01273 554407 The Ostomy Friends GroupContact: Jane Quigley 01323 417400Ext 4552

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

England - South West

Avon:B.O.S.S Bristol Ostomy Self Support Contact: Janet 01275 472873Rob 01179 668021

Cornwall:Hayle’s Angels Stoma Support GroupContact: Sue Hatton01326 340058Ostomist and Carers Support GroupContact: Christine Davey 01208 831471OptimistsContact: Sue Hatton 01326 340058

Devon:Mid Devon Ostomy GroupContact: Janice Parkyn01363 776417Devon IAContact: Margaret Bond01392 447374Devon Stoma Support GroupContact: Donna Ashbrook01626 854862

Dorset:CUPID Colostomy, Urostomy, Pouch &Ileostomy of Dorset - West DorsetContact: Colin Clare01305 853 288

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

Wales

Blaenau Gwent Self HelpContact: Celia McKelvie01873 852672Bridgend Ostomy Patients Support GroupContact: Anita Brankley (Secretary)01656 645602 orPat Jones 01656 786103Royal Glamorgan Stoma Care Support GroupContact: Domenica Lear 01443 443053

Swansea Ostomy Self Help GroupContact: Glynis Jenkins 01792 418245

Northern Ireland

Antrim Area Stoma Support GroupContact: Chris Wright 07720 717771Belfast Royal VictoriaContact: Sarah Haughey/Audrey Steele 02890 240503Ext 3483Causeway Patient Support GroupContact: Mary Kane 028 70 346264Colostomy Association Volunteers Northern IrelandContact: Chris Wright07720 717771Daisy Hill Hospital NewryContact: Bernie Trainor028 3883500 Ext 2222Mater Hospital BelfastContact: Karen Boyd028 90741211 Ext 2329North Down Stoma Support GroupContact: Adrian Ewing07850 741511Southern TrustContact: Mary Jo/Bernie 028 38612721Ulster HospitalContact: Hazel/Martina 028 90 550498

Eire

Bowel 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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