tidings_issue 19 autumn 2010 - colostomy uk

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

welcome to AUTUMN

The response to the summer issue of Tidings was excellent and theColostomy Association and EditorialTeam would like to thank everyonewho sent in donations, letters to Dear Nurse, ideas for new articles,requests for literature, emails andqueries.

I am pleased to say, this is exactly what I and the Editorial Team had hoped for,however, it doesn’t mean you can stopnow! No! Towards the back of this issueof Tidings is a Feedback Questionnaire –from time to time we need to know thatthe content of the Magazine is fulfillingour readers interests. Some 19,500Tidings are printed and the readership iswidening. It includes colostomates, theirpartners, family members, carers, otherostomates, support groups, stoma carenurses, colorectal nurses, GP’s andsurgeons. So, please fill in the form,detach and return it to Head Office by31st October, addressed to - TidingsEditor - many thanks! I expect anoverwhelming response please don’t let me down!

Our Open Day…is coming up fast andall are welcome; you will find moreinformation on Page 13. It is on Saturday16th October at the Heritage MotorCentre, Warwickshire and includes FREEentry to the centre until 5pm. ContactRichard Bray – General Manager formore details or ring Head Office on 0118 939 1537 to book your place!

I am delighted to welcome two newcontributors to Tidings, Toni Johnson RNDip NS, ENB 980, ENB 998 writing forProblematic Stomas about StomaGranulomas and Sophie Medlin BSc RDwho will write a series of articles entitledDiet and your Stoma, the first of which isour Open Door feature - questions andexperiences relating to both series aremost welcome. More work for you!

Recently, I have had time to reflect onthis year’s issues of Tidings Magazine.Turning the pages of each issue I find I am overwhelmed by the diverse andinspirational content.

The personal stories in particularhighlight the tenacity, determination andcourage of individuals of all ages whoare managing their illness or haveovercome their illness and its incumbentdifficulties. They also reveal the innatehuman capacity to accept and adapt tochange and step forward towards a newlife!

These experiences are invaluable andprovide readers with an insight into thejourneys of others towards a colostomy,and thereafter ‘living with a colostomy’.Each is unique and all have much topass on to new and experiencedcolostomates, families, carers and thosewho are involved in stoma care.

What amazing people you are – allindividual, all unique!

Chatting to a very recent colostomateafter contact via email. She told me thatwhen she first woke up after heroperation she found it difficult to look ather stoma or accept it. Her mind wasmade up, her life was over. She also saidher stoma care nurse was superb, verykind and supportive. However, she felt itwasn’t enough for her. Her stoma carenurse gave her a few issues of Tidings toread and this is what she said, “Themore I read the more I realised I wasnot alone! I would be able to live my lifejust like everyone else, I felt so muchbetter from that point on.”

The power of the written wordexpressing YOUR experiences in Tidingscan change how people feel aboutthemselves; it can also change theirperceptions of their newfoundcircumstances and lead to an increase in confidence. The above quote istestament that YOUR input makes a realdifference.

I would like to say a huge thank you tothat particular stoma care nurse. To allthe Stoma Care Departments and to theindividual stoma care and colorectalnurses that give Tidings to their patients– Please keep doing so it is muchappreciated!

On behalf of the Editorial team enjoythis bumper 60 page issue of Tidingsand please don’t forget to send backthe Tidings Feedback Questionnaire.I encourage YOU all to get involvedwith Tidings...YOU make it what itis...YOUR Magazine!

Email:editor@colostomyassociation.org.uk

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

Did you know...

CA has Two Travel Certificates...available with information translatedinto different languages:

• French, German, Italian, Spanish,Portuguese, Greek, Turkish, Croatian,Polish & Russian.

• Thai, Vietnamese, Arabic, Hindi andMandarin

Helpful information Guides...

Two excellent booklets are availablefrom The Community Legal Service...

• Community Care - No.7• Claiming Benefits - No.C10

Contact: 0845 345 4 345or visit:www.communitylegaladvice.org.uk

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insidecontents

FROM THE EDITORwelcome toAutumn

CA NEWS

Coloproctologyand more...

FEATUREopen door

Sophie Medlin BScRD Colorectal andNutrition SupportSpecialist Dietitianwrites on Diet andYour Stoma

CA OPEN DAYHeritageMotor Centre

FUNDRAISINGmake adifferencehow you help!

OSTOMY NEWSDepartmentof HealthConsultationMay 2010

IN CONVERSATIONA COLOSTOMATECOMMENTSA regularcolumn froma colostomate’sperspective

TRAVELHints & Tipsfor Air Travel Be prepared

IRRIGATION -

ColostomatesExperiences

Sue Hattonreplies to your responses to our summerarticle

READERSSTORY

Overcominglife’s challengesstepping outinto a new lifeJanet Bradley

EDITORIAL TEAM

EditorJane Wood

Associate EditorRosemary Brierley

Executive TrusteeColostomate & HelplineVolunteerSue Hatton

Trustee Colostomate & HelplineVolunteerJackie Dudley

Office AdministratorGill Herbert

Office AdministratorJo McKenzie

Colostomate & HelplineVolunteerGeorgina Williams

Colostomate & VolunteerBob Buckley

Stoma Care Nurse AdvisorAmanda Gunning RGN, CNS

Kind thanks to all who havecontributed to this issueof Tidings.

Front cover picture featuresJustin Hansen - Gutless KayakingCourtesy of Justin and Victoria Hansen

Editorial Submissions:We welcome your contributionsto Tidings - if you have a story,article or letter that you wouldlike featured in the magazinewe would like to hear from YOU!

If you have an idea for anarticle and would like todiscuss this with the Editoror would like help writing yourstory please get in touch.

Tidings is YOUR Magazine...

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

Disclaimer: The display, description or demonstration of products and servicesor the inclusion of advertisements, inserts and samples withinTidings Magazine does not constitute an endorsement orrecommendation of these products and services by the ColostomyAssociation.

T I D I N G S | A U T U M N 2 0 1 0 | 5

HEALTH

Colonoscopythrough thestoma

YOUNG OSTOMATES

Focus onchildren livingwith a stomaAlfie’s story...

Breakaway

Aled inspireshis parentsto form TheVACTERLAssociationSupport Group

OSTOMYCOMMUNITYGutlessKayakingJustin Hansen

PATHWAYS TOA COLOSTOMY

PrimaryProgressiveMultipleSclerosis

HEALTH

Problematicstomas...StomaGranulomas

CHATBACK

Readers’Writes

READERS STORY

Enjoying life

HEALTHDear Nurseyour letters andqueries

CA QUESTIONNAIRE

Tidingsfeedbackquestionnaire

SUPPORTGROUPSFocus onthe westcountry andregions

Tidings MagazineWinter Edition

advert booking by 22nd Octoberadvert copy by 5th November

publication January 2011

About...the Colostomy Association

The Association represents theinterests of colostomates and other ostomates. We providesupport, reassurance and practicalinformation to anyone who has or is about to have a Colostomy.

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

How to get to in touch...By post: Colostomy Association2 London Court, East Street, Reading RG1 4QL

By telephone: General Enquires: 0118 939 1537

Stoma care queries only:Helpline: 0800 328 4257

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

Find us on Facebook:

How to become a memberof the Colostomy Association...

Simply visit our website and register at:www.colostomyassociation.org.ukor contact General Enquires: 0118 939 1537 for moreinformation

We will always do our best toinclude your contributions inthe next issue of Tidings or willhold them back for a futureissue. When submitting yourinformation don’t forget tosupply your name, address,phone number and e-mailaddress if you have one.

Please include any relevantphotos or illustrations as thesereally help to bring YOURmagazine to life! You can sendthese as prints or digital images.

Supply of digital images:When supplying digital imagesfor inclusion in Tidings pleasetry to observe some or all ofthe following criteria;

• Images should be in RGB mode

• Images should not be lessthan 1500 pixels x 1200pixels at 300 pixels per inch (equal to 12.5cm x 10cm).

• File sizes not less than10Mbytes uncompressed

• Images in Tiff with LZWcompression or JPEG format.

• For scanned images pleaseset at 300 ppi in RGB modeand scan original @100%.

Feedback...We are alwaystrying to improve yourMagazine and welcome yourfeedback. Enjoy this edition ofTidings we look forward tobringing you the next edition...

How to contact the Editor

Write to: Colostomy Association2 London Court East Street Reading Berkshire RG1 4QL

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

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

Advertising EnquiriesFor advertising enquiries and media packTel: 0118 983 6226

Don’t delay...Donate Onlinetoday!There are NOW twoways to donateonline...

Visit the CA websiteand simply click on the donate panelon the home page.

2Visit the Just Givinghome page you willsee a search panel‘Find a Charity’ typein ColostomyAssociation.

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C A N E W S

Colostomy Associationattends ACPGBI 29-30thJune 2010The Association of Coloproctology ofGreat Britain and Ireland (ACPGBI)Annual Meeting was held this year atthe Bournemouth International Centre(BIC). The event was well attendedand offered delegates the opportunityto catch up with their peers as well aslatest the information on medicines,surgical techniques and equipment.

During the three days the ScientificProgramme covered discussions oncontroversies, evidence-basedlectures, symposia, consultants’corners and short papers.

World experts from Canada, USA,Spain and Holland were among thedelegates. Sessions from the Dukes’Club and Nurses Forum added aneducational and entertaining flavourto the programme. For the first time aMultidisciplinary Team (MDT) cornerwas in action answering delegates’queries.

The event was attended by...Sue Hatton – Executive Trustee Richard Bray – General Manager Jane Wood – Tidings Editor Ian Daniels FRCS our new VicePresident visited the CA stand andchatted about about potential newsurgical techniques for Hernias.

Reasons for CA attendance...

• To raise awareness • Increase education and

understanding about ‘living with a colostomy’.

• Knowledge gathering for the CA• Change perceptions of patient

support groups• Continuity of networking/alliance

building with significant others• Send clear messages to those who

can affect change

Outcome...Information gathered from thismeeting of specialists - provided theCA with various points and topics forfurther discussion and action.

Paying for Parking at Hospitals...would youlike it stopped?In a recent Good Housekeepingmagazine there was an excellentarticle on Paying for Parking atHospitals. Do you feel strongly aboutpaying for hospital parking, if socontact the Editor with yourcomments. You can learn more byvisiting the website below...

Visit: www.allaboutyou.com/lifestyle/Good-Housekeeping-Hospital-Car-Parking-Campaign/event

Is bowel cleansing oralmedicine leaving a nastytaste in YOUR mouth...

If the answer is Yes! It shouldn’t be!Oral medicine prior to diagnosticprocedure e.g. colonoscopy doesn’thave to be unpleasant, cordial can beadded to taste with the exception ofblackcurrant.

Accessible loos?More and more areas are doing awaywith ‘disabled loos’ and makingthem Mother and Child...not reallysuitable for Ostomates. I thinkthat Councils need a wake-up call and who better to do it - than ourmembers. What do you think?

Talking about...The Good Digestion Show

The GoodDigestion Show,incorporatingStoma Central, isan exciting newexhibition bringingtogether all matters

relating to digestion, from foodintolerances and dietary choices tothose with digestive disorders andstomas. Being held at Exec, on theEast of England Showground,Peterborough on 24th & 25th June2011, the exhibition will showcase allthe different appliances and services,as well as clothing. The show has aseminar theatre with qualitypresentations running throughoutand celebrity chefs Lesley Waters andAntony Worrall Thompson will besizzling in the kitchen!

For more information and toregister for tickets, visitwww.thegooddigestionshow.co.uk

Helpful Ostomy SupportGroups & Organisations...

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

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

• IOA International Ostomy Associationwww.ostomyinternational.org

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

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

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

• National Association for Colitis and Crohn’s diseaseTel: 0845 130 2233www.nacc.org.uk

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

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

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

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

L to R: Jane Wood - Tidings Editor, Mr Ian Daniels FRCSand Sue Hatton - Executive Trustee CA

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

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

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

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

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

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C A N E W S

Supporting YOU...The Colostomy Association provides FREE support literature - covering awide range of topics - written by medical professionals and colostomates.We are currently working on several new additions to our literature -Colonoscopy through the Stoma, Hernias and a Carers booklet.

To obtain any of the literature listedhere - simply write in, call or emailyour request to arrange delivery ofthe leaflets and booklets you require.

Write to: Colostomy Association, 2 LondonCourt, East Street, Reading RG1 4QL

Email:cass@colostomyassociation.org.uk

Our literature is available to download from our website. Justcomplete the online registrationprocess and the literature will beavailable for you to download toyour computer.

Visit:www.colostomyassociation.org.uk

Tidings Magazine:• A4 56 page Quarterly magazine Written by colostomates -dedicated to colostomates, theirfamilies and carers

Stoma Care Management:• Living with a Colostomy• An Introduction to Irrigation

Health:• Healthy Eating• About Rectal Discharge• About Stoma Reversal

Travel:• Travel Advice• Travel Certificate - Europe• Travel Certificate - Other

For Children:• Sam has a Stoma

(Children’s storytime colouring book)

Raising Awareness for CA:• One to One leaflet• About the CA

Factsheets• Deodorants• Insurance for Ostomates• Magazines for Ostomates• Pouch/Bag Covers• Manufacturers of Stoma Products• Rectal Pain• Spare Ostomy Supply Collection• Suppliers of Stoma Products• Support garments for Ostomates• Swimwear• Trousers• Underwear• Useful Organisations• Websites for Young Colostomates

Did YOU know that the Colostomy Association provides a patient’s goinghome from hospital pack...if you would like more information aboutwhat is included in the pack - contact Head Office on 0118 939 1537

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.

CliniMed® is a registered trademark of CliniMed (Holdings) Ltd. Cavell House, Knaves Beech Way, Loudwater, High Wycombe, Bucks. HP10 9QY. 2008 CliniMed Ltd. 979/0808

For a free sample of LBF®, 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 care-line 0800 036 0100 or visit www.clinimed.co.ukMr/Mrs/Ms: Initials: Surname: Address:

Postcode:

Tel. No.: E-mail:

The alcohol free barrier for at risk skinMaintaining skin integrity is a complex process that is often taken for granted – until damage occurs.

While many patients use a skin barrier to protect their skin from bodily fluids, friction abrasions or adhesive trauma, traditional barriers contain alcohol, which dries the skin and can cause stinging.

Liquid Barrier Film (LBF®) uses new silicone technology that dries rapidly, leaving a breathable, transparent skin barrier that softens and soothes as it protects.

To help avoid the risk of tissue damage, LBF® is completely alcohol-free and proven non-cytotoxic in sensitive dermatological tests, so it won’t harm even sensitive skin. For more information on why this is important to patients with broken or vulnerable skin, call 0800 036 0100 or ask your local representative.

1683 LBF A4 Ad AW.indd 1 26/11/08 14:29:13

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

Many people with a new stoma findgetting established back on theirnormal diet a struggle, particularly inthe early stages. This is probably dueto the unpredictability of new stomasand the period of adjustment neededto get used to the function of thestoma. It is very important to beaware that, in the majority of cases,people with stomas can return to theirusual eating and drinking habits veryquickly after their surgery.

New colostomies usually work within2-5 days and the output is likely to bewatery at first, settling to between200-600mls daily of semi solid stool.A new ileostomy will start workingwithin 24 hours and the output duringthe first week can be expected to bewatery and around 1200mls per day.Over the next couple of weeks,ileostomy output usually decreases toaround 600-1000ml per day and thestool becomes porridge-like inconsistency.

With both colostomies andileostomies, the introduction of solid

food helps the gut to begin to work asnormal and allows the stool to thickenand become less watery. It isimportant to eat as well as possible,as soon as your surgeon allows. Thishelps to establish a normal stomaoutput after the operation and willallow your body to recover.

In many hospitals, the reintroductionof food after your operation will beestablished as follows:

• Stage one: Clear fluids – blacktea/coffee, jelly, clear soup, water,cordial.

• Stage two: Free fluids – any liquidsincluding nutritional supplements andice cream.

• Stage three: Light diet – this is verysubjective but would usually includesoft moist foods which are easy todigest and avoid fried, spicy and highfibre foods.

• Stage four: Normal diet – norestrictions.

The time period between progressingthrough these stages will depend onthe hospital and your individualrecovery.

In hospitals where an enhancedrecovery programme is run, patientsare encouraged to eat a light or softdiet as soon as possible after theoperation. In most cases, with newstomas, this is most appropriate asthere are no ‘joins’ in the bowel(anastomosis) and the problem in thebowel downstream of the stoma is nolonger affecting digestion.

Patients with new ileostomies willlose salt from their stomas as thesecretions in the small bowel are verysalty. Salt is normally absorbed by thecolon which is no longer incontinuation with your bowel. Addingsalt to your diet when you have anileostomy will compensate for the lostsalt and should not affect your bloodpressure. As time progresses, yoursmall bowel can adapt to absorbmore salt and water and you candecrease the added salt in your diet. If

The Colostomy Association welcomes...Sophie Medlin, who will be writing regulararticles for Tidings. Sophie has a BSc in Dietetics from Plymouth University. Her first postwas as a dietitian at Birmingham Hartlands Hospital followed by a specialist post atPoole Hospital in Dorset. She has recently taken up a position as Colorectal andNutrition Support Specialist Dietitian at Torbay Hospital, South Devon Healthcare NHSFoundation Trust, where she works closely with the Stoma Care Department.

Diet and Your Stoma...

Open Door...Sophie Medlin BSc RD Colorectal and Nutrition SupportSpecialist Dietitian at Torbay Hospital, South Devon Healthcare NHSFoundation Trust writes for Tidings on aspects of diet and your stoma...

T I D I N G S | A U T U M N 2 0 1 0 | 1 1

you are concerned, speak to yourdoctor, specialist nurse or dietitian.

After your discharge from hospital, youshould feel confident to progress toyour usual diet. Many patients will begiven dietary advice to avoid certainfoods as they can cause watery stoolsor wind for example. This is verypersonal, however, and I wouldstrongly recommend you avoidrestricting your diet unless you findyou have a specific problem for whichyou should seek individualised advicefrom your dietitian or specialist nurse.Trying to eat little and often is usuallythe best way to build your confidencewith food and your new stoma.

It is often quoted that patients withileostomies should be cautious withhigh fibre foods such as skins, peeland pips due to risk of the ileostomy‘blocking’. However, unless you havebeen told you have strictures oradhesions in your bowel, this is notnecessary. If you are unsure, pleaseask a member of your healthcareteam.

Getting the balance right with yourdiet is as important for you as it is forthe rest of the population. Followingyour surgery and if you have been ill,it is even more important that you eatwell to allow for a full recovery.

Many patients with stomas find thatgetting their recommended ‘5-a-day’difficult due to the high fibre contentof fruit and vegetables. If you have thisproblem, below are some tips forincreasing your fruit and vegetableintake whilst avoiding undesirable sideeffects:

• Try peeling your fruit and vegetablesto reduce the fibre content.

• Try fruit smoothies such as blendedstrawberry and banana with a littlemilk or yogurt.

• Cook your vegetables well and trysteaming which helps vegetables toretain their water soluble vitaminsbetter than boiling.

• Choose soft fruit which is wellripened: nectarines, peaches, melonsand mangoes, for example, are welltolerated by most people.

• Try vegetable juice for a nutritiousvitamin boost.

• If you have an ileostomy, add salt toyour vegetables (including vegetablejuice!) to help you absorb the liquidcomponents more readily.

If you feel that you cannot eat asmany fruit and vegetables as youneed, it is worth speaking to a healthcare professional about starting agood quality vitamin and mineralsupplement.

The last part of the small bowel(terminal ileum), absorbs vitamin B12,so if you have had your terminal ileumremoved you may require threemonthly vitamin B12 injections. If youthink this applies to you, speak to yourdoctor, nurse or dietitian for furtherinformation. Vitamin B12 deficiencycan make you feel tired and low inmood so it is worth pursuing this ifyou are concerned.

Please bear in mind that all theinformation in this article is generaland if you have been adviseddifferently by your nurse, doctor ordietitian, their individualised adviceshould always be followed.

Sophie Medlin BSc RD

Q: I manage my colostomy byirrigation. Does this mean that I needto take vitamin or mineralsupplements?

A: If you are irrigating your colostomy,it is unlikely you will require vitaminand mineral supplementation as themajority of vitamins and minerals areabsorbed higher up in the smallbowel. Providing you are onlyirrigating once per day, the vitaminsand minerals absorbed in the largebowel should have adequate time incontact with the bowel wall to beabsorbed.

Editors Comment

If you have any topics you would likeSophie to cover or any questions you

would like answered:

Write to: Colostomy Association, 2 London

Court, East Street, Reading RG1 4QL

or Email:associate-editor

@colostomyassociation.org.uk

Healthy Eating with your Stoma...

Your diet questionsanswered...

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

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

We are delighted to announce thatboth our President Professor BillHeald OBE and newly invited Vice-President Mr. Ian Daniels FCRS will beattending our Open Day. As will theNational Patient Associationsrepresented by Mrs Anne Demick -Ileostomy Association and Mrs HazelPixley - Urostomy Association.

The Colostomy Association is veryproud of its achievements to dateand intends that this day bringstogether all those involved with stomacare - fellow ostomates, healthcareprofessionals, national and localsupport groups, manufacturers andsuppliers. The event will also providea platform for some excellentspeakers - presentations on the daywill reflect a positive outlook on ‘livingwith a colostomy’.

Ultimately, we hope everyone willtake away great benefits fromattending this event; improvedknowledge of their stoma and its care,a greater awareness of stoma careproducts and accessories, plus anincreased confidence and a sense ofbelonging to a charity which is thereto encourage, support and reassure.The event will open at 10:00am andafter registration and refreshments willstart off with an introduction from SueHatton - Executive Trustee, Colostomy

Association. Mr. Ian Daniels FRCS -Vice President, Consultant Generaland Colorectal Surgeon, Royal Devonand Exeter Hospital will then give aseminar about Hernias - Cause andTreatment. Julie Bastin, Co-Founder ofBreakaway will follow with an outlineof the work of this importantchildren’s charity.

After a break for refreshments, GlynnDavies MP for Montgomeryshire willpresent his view of an Ostomate inParliament followed by SiobhanCrowther of Lynn’s Bowel CancerCampaign who will discuss ‘Theimportance of Screening’. We thenhave a presentation from VanessaDenvir, CA volunteer, giving her viewof staying positive - ‘living with acolostomy’ and will include details ofher appearance on Channel 4’s‘Embarrassing Bodies’.

Monty Taylor - Chairman of theColostomy Association will bring theevent to a close at approximately3.00pm.

Manufactures and suppliers of stomacare products will be fully representedat this event, attendees will be able toview the stands throughout the day. We will also have ‘SpecialistDiscussion Areas’ available forattendees to ask questions about -

irrigation, exercise and keeping fit andtravel and insurance.

The Heritage Motor Centre is hometo the world's largest collection ofhistoric British cars.

Those attending this Open Day willhave FREE access to the Motor Centrethroughout the day until close at5.00pm.

For more information contact:Richard Bray - General ManagerEmail: richard.bray@colostomyassociation.org.ukor contact head Office on: 0118 939 1537 for more information.

Colostomy Association Open Day 2010Reaching out • Building awareness • Moving forward

Venue: Heritage Motor Centre - Gaydon - Warwickshire CV35 0BJ Date: Saturday 16th October 2010Time: 10:00am - 3:00pm

A very special Open Day Event...will celebrate the Colostomy Associationachieving five years as an independent self-funding, successful charityproviding support for all ostomates...

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

Tidings is always interested to learn about new stoma care products and services...from manufacturers andsuppliers. Colostomates...if you have found a stoma care product or service beneficial to ‘living with acolostomy’ please let Tidings know. YOUR findings could make ALL the difference to other colostomates.

Update on new stoma careproducts and services

Comfizz Cater for ChildrenJunior Support WearChildren can now enjoy all thebenefits of wearing Comfizz modern,functional support wear. No needto worry about PE at school, or goingshopping and using the changingrooms or even swimming. Comfizzsoft flexible garments will holdeverything securely in place,allowing you to forget about yourstoma and get on with enjoying lifeto the full.

Innovative Medical &Performance Clothing For further information on our children’s range and adult range please

contact us for a Brochure. Email: lorraine@comfizz.com or Tel: 01757 229 53.

Girls Briefs Unisex Boxers Unisex Waistband

Junior Support Wear range...NOW available on prescription...

Available in pink for the girls and smart grey for the boys also available in black, white, or neutral.

CuiWear launches New Products...for Hernia SupportCUI are pleased to announce the launch of several newproducts. These hernia support Girdles and Belts (Patentpending) have been designed by CUI UK based designteam drawing upon its extensive design and practicalknowledge of Hernias.

In collaboration with stoma clinics this new range ofbespoke support wear has been trialled for the past fewmonths. The response from the stoma nurses has beenoverwhelmingly positive.

The NEW Fulcionel Girdles and Belts are suitable forOstomates with large, prolapsed or unusual hernias. They help to reduce dragging sensations and minimisediscomfort. In addition the construction of the patented“cupping” system together with unique lining methodhelps to prevent irritation around the sensitive area.

There are a large number of ostomates with unusualhernias who cannot undergo medical treatment forvarious reasons. A bespoke service from CUI can help toprovide support for any shape and size of hernia. Seeadvert on page 51.

CuiWear have dedicated customer services teamavailable on freephone 0800 279 2050 to offer adviceand guidance.

Colostomate - Robin Rhodes -designs ‘Stomalarm’ - the alarmcan be used at night andsenses stoma activity...About three years ago RobinRhodes, had a colostomy followingemergency surgery due to diverticularabscesses, a complication of myeloma treatment.Following numerous episodes of overfilling of the bagduring sleep, he realised that some kind of alarm wasneeded to avoid the leakage that this caused, the ensuinglaundry problems and the overall distress.

As no alarm was available, Robin being a professionalDesign Engineer, decided to rectify this situation. Theresulting device named Stomalarm senses stoma activityand wakens the user by means of an audible alarm,allowing remedial action to be taken.

Robin is under the care of the Stoma Nurses at The South Warwickshire Hospital who are enthusiasticabout this innovative development. The current versionhas been tested and found to be effective and is nowbeing produced in small quantities by his company.Limited market research has indicated that a substantialpercentage of ostomates/ileostomates would benefit fromthis.

The device is now in limited supply. Robin will be atthe Gaydon Open day to demonstrate his product. For more details and how to purchase please visit:www.stomalarm.co.uk

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

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

Donations

When sending your

donation/s please mark

your letter/cheque with

Tidings Issue 19....

Thank you!

The Colostomy Association would like to take this opportunity to say a BIG THANK YOU to everyone who donates andfundraises on our behalf. We try to publish as many letters as possible - to those of you not mentioned here - you arenot forgotten - we would not be here without you - So, PLEASE keep up the GOOD WORK!

In Memory...Mrs Myra Fletcher £404.30Mrs Nelda Bradbury £ 30.00 Audrey Hart £ 80.00

Thank you

Kind thanks to ALLwho wrote in withdonations...

Dear EditorOn July 1st, I had my 90th Birthdayparty, which was attended by myfamily and friends. I asked for nopresents, but suggested they may liketo make a donation to the ColostomyAssociation. I am delighted to say theydid! Please accept a donation of £255. I enjoy reading Tidings and havelearnt much from theinformation provided.Yours sincerelyMT

Dear SirI enclose a donation of £200.Members of Mynydd Cynffig WI did asponsored walk to raise funds for yourorganisation, which has providedsupport to two of our members.Yours sincerelyEV

Dear AllWe recently had an anniversarycelebration and £50 was donated tothe charity of our choice. We thereforeenclose this donation and know it willbe put to good use.Keep up the good work.Yours sincerelyC and D Braund

Dear TidingsWe got married on the 29th July 1950and recently celebrated our DiamondWedding Anniversary. The weddingwas held at St. Margaret’s Church inEast Wellow, near Romsey whereFlorence Nightingale was buried. Tocelebrate we had a get together withall our family and friends. Werequested ‘no presents’ but suggesteddonations, to go to the ColostomyAssociation. I delighted to enclose adonation of £225. I hope that this willhelp to give support to othercolostomates, their families andcarers.Yours sincerely J and R Haken

Dear Sir/MadamMy friend and I held a coffee morningin aid of the Association in May and I have pleasure in enclosing adonation of £305, which we trust youwill find very useful.Yours faithfullyRG

Dear CARecently, on a very wet and windyevening, members of Lampeter InnerWheel held a BBQ in aid of theColostomy Association. In spite of thefact that there are just nine membersand the inclement weather we raised£300. Many thanks are due to ‘RotaryHusbands’ who stood bravely in therain and cooked the food!MJ (Mrs)

Dear Sir/MadamOn behalf of the Church Council, Ihave pleasure in enclosing a donationto the value of £100 being acontribution towards the ongoingwork of your Association.Truro Methodist Church

Thank youeveryone

for your kinddonations

500 Club - June DrawMr L Sutcliffe £326.00

Mr M McGowan £163.00

Mr G Gammon £163.00

Mr P Jesshope £163.00

Mrs M R Green £ 81.50

Miss J Matthew £ 81.50

Mrs M Graham £ 81.50

Mrs E M Woodhouse £ 40.75

Mrs E Payne £ 40.75

Mr R Mansfield £ 40.75

Mr A Williams £ 20.38

Mr P Day £ 20.38

Miss R Kealy £ 20.38

Other kind donations received...

• Royal Victoria Infirmary Open Day raffle raised £115

• Rockwell Collins UK Ltd raised £50• Wrexham Ostomy Friendship Group

raised £15

Can YOU help?...We want YOUR old or unwanted mobile phones, please! Every phone returned to the Recycling Appealby YOU on our behalf means YOU are helping us to raise funds - as the proceeds come back to Colostomy Association.Contact us: 0118 939 1537 or email: cass@colostomyassociation.org.uk and ask for YOUR FREEPOST envelope today!Then place your old or unwanted phones into the envelope, seal and drop in the post!

Did YOU know...The Colostomy Association has teamed up with Charity Flowers - www.charityflowers.co.ukto receive 15% of any orders placed with them - it’s a winning combination - two gifts in one!

An overview of the new arrangementsunder Part IX of the Drug Tariff for theprovision of stoma and urologyappliances – and related services – inprimary care has been published onthe Department of Health website at:

http://www.dh.gov.uk/en/Consultations/Responsestoconsultations/DH_097226

Some of the key points are:

• The new arrangements wereimplemented on 1 April 2010.

• These new arrangements do notaffect dispensing GPs, who willcontinue as before.

• Dispensing Appliance Contractors(DACs) and Pharmacy Contractors(PCs) who dispense prescriptions canchoose to offer either EssentialServices or Essential Services pluseither both or one of the AdvancedServices.

• Essential services that must beprovided include a repeat dispensingservice, appropriate advice, a homedelivery service and a supply of wipesand disposal bags.

• There is also a requirement toprovide urgent supplies, prior toreceipt of a prescription, provided theprescriber undertakes to provide aprescription within 72 hours.

• Advanced services include stomaappliance customisation and applianceuse reviews (AURs).

• AURs must be conducted by aspecialist nurse working on behalf ofthe DAC or PC or by a pharmacist,either in the home of the patient or atthe DAC or PC premises, where theremust be a specially designated areafor confidential consultation, awayfrom areas to which the public have

access. At all times, these specialistsmust maintain close contact with theNHS healthcare professional lookingafter the patient and also their GeneralPractitioner and advise of anyproposed changes. The request for anAUR must be prompted by the patientand not the contractor.

• All contractors must be able todescribe to patients how theelectronic prescription service willwork when it is available

• The new arrangements have beenput in place to ensure that DACsoperate within a similar clinicalgovernance framework to PCs andthat PCs offer a similar level of serviceas the DACs.

The Department of Health lists the key aims as:

- Maintain – and where applicable –improve patient care;- Ensure equitable payment to DACsand PCs for the provision ofequivalent services;- Achieve transparency between whatis paid for services and what isreimbursed for items.

• The detail is in the remuneration andreimbursement arrangements thatapply to the contractors (DAC & PC).

Kind thanks toAnne Demick IAfor contributing this article

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

Department of Health Consultation - May 2010Arrangements under Part IX of the Drug Tariff for the provision of stomaand incontinence appliances and related services to Primary Care...

Essential services - include repeatprescriptions, provision ofappropriate advice, home delivery ifrequested by the ostomate/patientand a supply of wipes and disposalbags.

Advanced services - includeappliance customisation (i.e.cutting appliances to our size) andappliance use reviews (AURs). TheAUR must be conducted by aspecialist nurse working on behalfof the DAC or PC or by apharmacist in the home of thepatient or at the supplier'spremises, where there must be aspecially designated area forconfidential consultation. Thesespecialists, if they carry out AURs,must maintain close contact withthe NHS healthcare professionallooking after the user. DACs (e.g.Homestyle/Fittleworth) and PCs(e.g. Boots) can opt to offer,Essential Services or Essential pluseither or both of the AdvancedServices.

The ESSENCE of Service Provision

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

A Colostomate Comments...

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

“Is a colostomyclassed as adisability?”

This question often comes up on theCA helpline and at open days. Thereason people ask will vary. It may bebecause they want to know whetherthey are entitled to disability benefitsor if they may use facilities designedfor the disabled i.e. parking spaces ortoilets.

Disability Benefits includeEmployment Support Allowance(ESA), which used to be calledIncapacity Benefit, and DisabilityLiving Allowance for people under 65,or Attendance Allowance for those of65 and over.

The Disability Rights Handbook statesthat ESA is for people assessed ashaving a limited capability for work.This is determined by the ability toperform physical functions classifiedunder eleven activities includingwalking, standing & sitting, manualdexterity, hearing, vision etc. A stomacomes under the continence section.On its own a stoma only counts if youare unable to affix, remove or emptyyour stoma appliance without helpfrom another person, or withoutcausing leakage of contents. However,if in addition to a colostomy orileostomy, you also have problemswith urinary incontinence you mayqualify. Some ostomates may receiveESA if other physical (or mental)functions are impaired for reasonseither related or unrelated to theirstoma.

To qualify for Disability LivingAllowance (Care Component) orAttendance Allowance you must beso severely disabled, physically ormentally, that you require, fromanother person, frequent attention inconnection with your bodily functions.

So it seems that it is not the stomawhich determines whether a personis entitled to disability benefits, buthow the stoma and/or other medicalproblems affect that person’s life.Does it affect your ability to work? Doyou need help with changing anappliance on a regular basis?

An abdominal stoma is on theWaterSure scheme’s list of medicalconditions which require the use ofsignificant additional water. However,it is only if your water supply ismetered and there is someone in thehousehold who receives an income-based benefit or tax credit thatWaterSure may be able to help byputting a limit on the amount you payin water and sewage charges.

Parking Permits and Toilets aretopics frequently mentioned on thehelpline. The Department ofTransport’s leaflet “Can I get a BlueBadge” states that to qualify for adisabled parking permit you musthave a permanent and substantialdisability which means you cannotwalk or which makes walking verydifficult. So it seems that it is mobilitythat is the sole criteria here.

However, all of us who have a stomahave the right to use a Disabled Toilet(now much more appropriately calledan Accessible Toilet). The extra space,washbasin and disposal facilitiesmake pouch changing so mucheasier. We are also entitled to applyfor a RADAR key.

Every ostomate is different, a factthat is evident from the letters andstories that the CA receives and printsin Tidings.

On the one hand we read aboutpeople who after stoma surgery havereturned to their former life andemployment and even run marathonsor travel the world. They have neverconsidered themselves - or wouldwant other people to label them as - disabled.

On the other hand for some acolostomy is not a cure for theoriginal medical condition. Someostomates may have had largesections of bowel removed or maydevelop complications during orfollowing surgery which lead toongoing problems. A stoma may beformed to improve the quality of lifefor those with existing disabilities i.e.spinal injury or multiple sclerosis.There are also ostomates who qualifyfor disability benefits for otherunrelated medical conditions e.g.heart disease, arthritis.

So it seems that the answer to thequestion of whether an individualwith a colostomy is disabled is: ‘Well, it all depends…’

Reference:Disability Rights Handbook 35th Edition April 2010 – April 2011Published by DisabilityAlliance IBSN 978-1-903335-47-5 Chapters 3,4,9 &10

For more information:

Benefit Enquiry Line Tel: O800 88 22 00Email: bel-customer-services@dwp.gsi.gov.uk

Citizens Advice Bureau (see local telephone directory)Web: www.citizensadvice.org.ukwww.adviceguide.org.uk

Macmillan Cancer SupportHelp with checking benefits, fillingin forms etc. for people with cancer.Tel: 0808 808 00 00 Mon – Fri 9am - 8pmWeb: www.macmillan.org.uk

Leaflet: “Are you eligible forWaterSure?” available from Consumer Council for WaterTel: 0845 039 2837Web: www.ccwater.org.uk

Leaflet: “Can I get a Blue Badge?”available from the Department of TransportTel: 0300 123 1102Web: www.mobility-unit.dft.gov.uk

written by Rosemary Brierley - Associate Editor

“Cruising -disposing of flushablepouches...aboardship...”

In the last issue of Tidings wepublished three letters fromostomates who told us how they hadsuccessfully disposed of the innerliner of flushable colostomy bagsdown the toilet on cruise ships buttwo of them stressed it was veryimportant that the flange is removedfirst and disposed of separately in thewaste bin in the en-suite. However,since then we have received thefollowing letter and e-mail fromreaders which we would like to bring to your attention.

Dear Associate EditorI recently wrote to the Chief Engineerof the P & O cruise ship Oriana askingwhether it would be safe to flushFreestyle Vie (flushable) pouchesdown the lavatories on board his ship.I hope the enclosed reply will behelpful to your readers.

Kind regardsPauline

P.S. I am also sending a copy of thereply to the manufacturers of FreestyleVie flushable pouches.

P & O CruisesRe Freestyle Vie flushable pouches

Thank you for your letter which waspassed on to Oriana’s Chief Engineer.Regrettably he has advised me thatwe cannot allow any item other thanhuman waste and our ship toiletpaper into the sanitary system onboard due to the extremely narrowpipework in the vacuum system. Eachtoilet has a snag ring at the back onwhich the bag would be caughtinitially and this would block not onlyyour toilet but all the others (approx25) on your section with floodingbeing the result. Added to this wehave a bio-friendly system and theaddition of chemicals in any shape orform would upset the delicate balancein which the live bacteria would work.

We are sorry we cannot be moreaccommodating with your request,however, the risk involved withflushing other products is one that theship feels is too great.

I would like to take this opportunity towish you an enjoyable cruise.

Yours sincerelyMedical ProcessorFleet Medical Department

E-mailSubject: Cruise ship toilets On our recent cruise due to problemsoccurring in the toilet system theCaptain stated quite unequivocallyover the address system "If youhaven't eaten or drunk it first, do notflush it down the toilet." I personallyuse the sanitary bags provided forladies which my wife deposits in thebin provided in the "Ladies". Perhapsthese bins should be also provided inthe "Gents" everywhere not just onships. Thank you for a very usefulmagazine, even though after sevenyears I am still fortunate to have veryfew problems with my stoma.

C.S. (Mr)

Alternatively, to dispose of usedpouches you can ask the ship’smedical centre to supply a yellowmedical waste bag which will beregularly and discreetly collected fromyour cabin. If you normally emptyyour pouch you can seal it inside adisposal bag and leave it in the bin inthe en-suite which will be emptiedtwice a day.

Editors commentIf you have any issues you would like

raised in this column please e-mail:

associate-editor@colostomyassociation.org.uk

or write to: Associate Editor, Tidings, Colostomy Association,

2 London Court, East Street, Reading, Berkshire. RG1 4QL

• Always carry a letter from yourDoctor stating that you need to carryyour supplies in your hand baggage (a Doctor’s letter may attract a fee).

• Ensure you have a Travel Certificatethat states you have a colostomy/stoma, available from the CA or yoursupplier. Carry the Travel Certificateand Doctor’s letter on your person –so that they are readily availableshould you be questioned about yourcolostomy during a body search.

• Be sure to take with you thetelephone numbers of your supplier –in case of an emergency and the needto obtain fresh supplies.

• Carry a prescription detailing yoursupplies. This proves your items aremedical plus gives information if youneed to purchase or send for supplies.

• Be prepared to carry your supplies ofpouches and flanges in your handbaggage. This should be possible –even for a very long stay – as cabinbaggage on most airlines allows a bagof 22in (56cm) tall, 17.7in (45cm)wide and 10in (25cm) deep.

• Pack at least twice the amount ofpouches and flanges for the periodthat you will be away. This allows foraccidents and tummy upsets, or forother activities such as swimmingwhich may require more pouchchanges than usual. Don’t forget topack the same for other necessaryitems for your pouch change routine.

• Unpack your supplies from theirboxes and re-pack in transparent bags,placing a prescription on top of thepouches. This ensures that anyoneexamining the items has no need tohandle them to check what they are.

• Any liquid you may wish to carry onboard must be less than 100ml andbe carried in a transparent resealablebag ready for examination. Scissorsmust be placed in your hold luggage.Take pre-cut pouches if necessary.

• Always include a small pouchchange kit (in a transparent resealablebag) in your hand baggage. It shouldcontain a couple of clean pouches,wet wipes and disposal bags, so thatif you need to change during theflight, you can!

• In case of a body search and arequest to see your stoma/pouch (in aprivate search area) always carry aclean pouch plus disposal bag on yourperson, in a pocket – just in case!

• Before going through the securitysystem try to have a clean bag – thisdoes not show up so clearly on thescreens of the new body scanners.

• Avoid wearing anything that mightset off the alarms, jewellery etc; soyou get a clear walk through.

NB: It is not always necessary toinform your airline that you are anostomate. However, if you prefer to advise them, then contact the airlinescustomer service team, and they willmake a note against your reservation.If you require an aisle seat ask themfor their help to secure one.

written byJackie DudleyTrustee

A I R T R A V E L H I N T S A N D T I P S

Organising a holiday or business trip - whether it’s at home or abroad - can be an exciting and sometimes exhausting process! Planning ahead can prevent theprospective traveller from experiencing any last minute hitches. Air travel is often of real concern to the ostomate and the CA receives many travel related enquiries to their helpline. The following are a series of helpful hints and tips for those who fly away to distant shores...

Be Prepared...

Irrigation and you...

There was some dissention amongstthe editorial team that my Irrigationpage was taking up space, after all‘only 3% of Colostomates irrigate’.This my point, why do only 3% ofColostomates irrigate? Are theygiven the choice? Did their surgeonask them prior to surgery, ‘If youwere given an option of washingout your bowel each day and thennot having to use the bag/pouchwould you like to know more?’Some surgeons seem to beuninterested in the Ostomate as aperson with a life after the removalof the diseased colon, they see usas an interesting challenge toremove the offending part of theorgan but do not consider how wewill then cope with a stoma.

Our stoma nurses are our guardianangels. They tell us what we shoulddo and we hang on their everyword. If your stoma nurse says shehas discussed your life as acolostomate with the surgeon andthat your stoma has been formed sothat you can wash out your boweleach day (or every 2 days), and ifyou think your home life couldaccommodate you using a loo forup to an hour a day, then weirrigators are unanimous in agreeingthat this is a great option. If youdecide it is not for you, it’s YOURchoice. My concern is that YOU arebeing given a CHOICE.

I have been irrigating for 12 years.Sadly my body has changed shapeand the trim woman that emergedafter surgery, chemotherapy andradiotherapy has grown as I becomemore sedentary! I cannot wear theplug as most proficient irrigators do,I prefer to play safe and wear abag/pouch. Over the years, I havebeen used to my ‘guts’ playing upwhen I am out of my comfort zoneand the bag (the original bag thatwas recommended to me by mystoma nurse!) has not played fairand I have felt that nasty warmmess trickle, or sometimes gushdown my nether regions! I have

persisted and slapped it on andheld my breath, great when I’m athome, but a nightmare if I am away.

But, I was given a free sample ofbags (I have to be impartial andcannot recommend a certainproduct by name!), but they stick tothis wrinkled, creased, stretchmarked tummy and they stay inplace! When I feel that ghastlyhorrid moment that I know is ahuge bowel movement and sweatsits on my upper lip, I am safe –because it all goes into thiswonderful bag, no smell, no obvioussign that I have a balloon on mybelly AND most amazingly, if I amsomewhere that I would rather notcarry a pint of poo around, I caneasily dispose of the bag.

So another tip, do not keep with thesame products if you feel they areletting you down. Your bodychanges as you get older, so theadhesive on the pouch does notalways stick and you may need tobuild around the stoma. Your stomanurse can advise you, all you haveto do is to book a review. Thecarelines of stoma care appliancesuppliers are also very helpful and aport of call if you want to trysomething new.

Richard Farrow contacted me afterthe last issue to complain that I hadnot included enough of his adviceon constructing his prototype sleeve.If you would like to discuss this withhim, you can obtain his numberfrom head office or will pass yournumber onto him. The same advicegoes for anyone wanting to contactme! You can always send an emailand the girls will forward yourcomments to me.

Bob Buckley wrote back followingmy queries about reusing irrigationsleeves in the last issue. He quotesfrom a declaration leaflet in his boxof supplies which states;According to the European medicaldevice directive as amended in

2007, we should inform you that,”Reuse of this single use productmay create a potential risk to theuser. Repossessing, cleaning,disinfection and sterilisation maycompromise product characteristicswhich in turn create an additionalrisk of physical harm to or infectionof the patient”

This was also picked up by RogerAshford who gave his opinion on‘should we pay if we do not reuseour sleeves’. Prior to irrigating heused two or three pouches a day,whereas now he uses one sleeveand one stoma cap. Roger hassuggested a possible cost saving tothe NHS of £1,300 per year – healso suggests they should be payinghim! Roger sterilises his equipmentonce a week using Milton tablets,which he says reduces the amountof mould build up in the corners ofthe bag and in the tube, but it doesnot eliminate it entirely; he believesthat the Milton also degrades thematerial over time (it seems to getyellowish and less flexible). Rogerasks “Does anyone know of a moreeffective sterilisation product?” Hereplaces the bag every six months.

Janet Bradley uses B.Braun’s watercontainer, tubes, cone and valve andDansac sleeves. She tried Coloplast,but does not like the belt and sleevesystem and comments that thewater container does split. She hasspoken with a representative fromColoplast who told her that was’just the way it was’! She wasadvised to wash it out with bleach.Understandably Janet’s reaction wasthat there was no way she wouldput water through her stoma via atube that had been soaked in ableach solution. She states thatB.Braun’s equipment lasts muchlonger and can be taken apart.Individual pieces can be replaced,thereby saving money.

Shirley uses Dansac sleeves as theystick to her skin and she wouldnever reuse a sleeve. She steeps her

Sue Hatton Executive Trustee writes...it has been over a year since Tidings beganhighlighting irrigation for colostomates. The response has been amazing - we aredelighted to hear that some of you are now irrigating due to reading Tidings. Thankyou all for your valuable contributions please do keep them coming.

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

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equipment in Milton once a monthand renews her bag when theequipment starts to fail.

I would also like to thank Mr DavidColsell for his letter telling me thathe has been irrigating since theearly 1970s, he irrigates every 48hrs– this will always last to within afew hours of the next operation. Hewrites ‘I can say, without doubt,irrigating is the best, most sensiblething I have ever done (except tomarry my wife, in case she readsthis)!!’

Paul George tells me that he didnot know about irrigation until heread our page in Tidings. He madean appointment to see his stomanurse Sister Paula Brayford at theRoyal Shrewsbury Hospital. Hewrites’ Sister Brayford was veryhelpful, professional and caring.From that day on I have not lookedback. I now feel I can go out againwith no problems, the first time inseveral years after spending just 45minutes a day irrigating. ‘LifeChanging! Thank you Tidings foryour help!!’

In response to my cry for helphaving forgotten my base plate,Adrian Davis emailed in to tell usabout an entertaining little diversionduring his enforced stay away fromhome courtesy of the IcelandicVolcano.

He had taken lots of spare bags andwipes, in case of an upset, butdidn’t expect to spend any morethan two days away from home toallow for the odd cancelled flight orbad weather, so he only took oneextra sleeve that could be rinsed ifabsolutely necessary. (The secondrinse never gets rid of the pong!)Here he tells us how to improviseto create a Volcanic IrrigationSleeve!

“As I didn’t want to abandonirrigation altogether, I triedimprovising with disposal bags,

which does work to some extent,but tends to get a bit messy. Theyare the wrong sort of plastic.

Instead he suggests, visit the localsupermarket and buy a pack/roll offreezer bags (the ‘right’ sort ofplastic), and both some single sidedand some double sided sticky tape.Add scissors if you have forgottenyour own. Trim the closed end fromone bag, slip the end into anotherand stick all around with the singlesided tape - there you have it - asleeve well almost. It obviously hasa right way up in terms of flowdirection and it can be shapedusing more tape if you prefer. Cut ahole of an attractive size to fit yourstoma in an appropriate place onone side, not too near the top andcut an opening in the top for coneaccess. Then surround the hole, onthe outside with a patch of doublesided tape. How many stripsdepends on how wide the tape is,of course, but you should aim tomake a patch not dissimilar to anordinary wafer, give or take a bit.Make sure the tape is right up tothe lower edge of the hole, becausethat is where it is most likely to leakif it does. Try to keep your fingersoff the sticky outside surface if youcan, especially near the middlewhere adhesion is most important.

Come irrigation time, apply thesleeve in the natural way, press onwell and get irrigating. (Your doublesided sticky tape is not as strong aswafer adhesive and may have beendowngraded by accidentalfingerprints).

In the absence of any commercialtop closure, it is amazing what youcan achieve with little pieces ofsticky tape. Improvise a bit – bag tobag – bag to tum – whatever.

Nothing ventured, nothing gained.In future I will take only oneadditional sleeve just in case, but Iwill also toss in a little roll of bagsand sticky tape!’

Now you all know how to make aVolcanic Irrigation Sleeve! Maybewe should keep this info as aleaflet!

Finally, Richard Allardyce wrote thathe was disappointed with the lackof understanding that seems toprevail about irrigation. He went toan Open Day and of the 15 standsnot one supplier had a sample onshow. He says that he has tried 3different types and none areperfect. He is disappointed thatnone of the representatives areinterested in taking his ideasfurther.

May I suggest that if you knowthere is an Open Day and you areprepared to attend and man theColostomy Association stand, youtake a kit bag full of brand spankingnew irrigating equipment, and thatyou are prepared to showinterested colostomates how theprocedure works. All I would ask isthat you keep your clothes on anddemonstrate over them!

I will ensure that head office hascomplete kits for demonstrationpurposes - so you can phone theoffice and request an irrigation kit.

Editors Comment If you would like to share yourirrigation stories or comments

write to:Sue Hatton

Executive TrusteeColostomy Association

2 London Court East Street Reading RG1 4QL

or contact the editor via e-mail:

editor@colostomyassociation.org.uk

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Janet Bradley CA Volunteer andintrepid travellertakes us on her

own personaljourney towards

a colostomy and explains how she was

introduced to irrigation...

My name is Janet Bradley. I am 72years old and have had a stoma for13 years. In 1995, I had been livingabroad with my husband for 32 years,19 of which were in Kobe, Japan. Thatyear I was shaken by two bigearthquakes. The first was in Kobeand the second was that my husbandhad fallen in love with a youngJapanese woman and wanted adivorce. Whilst I was making plans toreturn to England, my brother-in-lawdied of a heart attack. I came back inNovember 1995 and stayed with mywidowed sister whilst we proppedeach other up.

I wanted to start a new life on myown so in April 1995, whilst I washouse hunting for somethingpermanent, I rented a flat in Henley-on-Thames. In July I found a smallhouse for me and my dog. Shortlyafterwards, one of my sisters wasdiagnosed with terminal breast cancer.My other sister (my twin) and I took itin turns to nurse and look after her,but after much suffering, she died inOctober 1996.

I picked myself up again and tried torestart my life, but I was not feelingwell. I went to my GP and duringrepeated visits was prescribedpeppermint pills and counselling. I was told it could not possibly becancer. I finally insisted on furtheradvice and was sent to an IBSspecialist. The results were due on aTuesday, but I suddenly received a‘phone call to come in on Mondayinstead. Dukes B cancer wasdiagnosed and the operation tookplace 3 days later. My consultant wasvery positive and said the chances ofneeding a stoma were 99% against. Aweek later I was recovering well butsuddenly felt very poorly. Some dayslater I woke up in intensive care withmy twin sister sitting next to my bed.She had been there day and nightafter receiving a ‘phone call at 6amsaying I was at death’s door. Shecaught the first train from Devon andstayed with me for the next 3 weeks. Iswear she saved my life by hauling

me back from a “white light”experience when I really wanted to go.

Apparently, my operation had beensuccessful, but the join had burst andI had septicemia. I was rushed tosurgery and a stoma was formed. I went back to my room from theatrebut, two hours later, I was very illagain. It was discovered that myspleen had been nicked duringsurgery, so it was off to theatre againto have my spleen removed. I endedup in intensive care for a week andtwo more weeks back in the ward.Even then, I had another scare when Isuddenly started bleeding large clotsfrom my rectum. The stump of myintestine had come unstitched so itwas back for yet another op.

After a month, I had become quitelethargic and probably slightlyinstitutionalised in hospital, but oneday a lovely nurse saw my problem,helped me into a wheelchair and tookme out into the sunshine and flowers.She gave me the very good advice“Take one day at a time, and do alittle more each day”.

When I finally got home, my twinsister stayed with me for two weeksand then I went to stay with a verygood friend for another two weeks.Back at home, I took my dog for aslightly longer walk each day andbecame stronger and stronger. I hadsix months of chemo, delayed for fourmonths until I was well enough tocope with it. In May, a friend droveme to the hospital for my last day ofchemo and also arranged a surpriseparty with champagne and smokedsalmon. Two months later I flew to LAand stayed with friends for twoweeks. I was still not very strong, sowe did one day sightseeing, and oneday rest. Two months later, feelingbrave enough, I went on a shortcruise and found I could manage onmy own. I contribute much of myrecovery to my wonderful family andfriends, and consider myself very luckyindeed to have had them there.I started going out and about more

R E A D E R S ’ S T O R Y T O W A R D S I R R I G A T I O N

Overcoming life’s challenges...stepping out into a new life

T I D I N G S | A U T U M N 2 0 1 0 | 2 5

often, trying to be as normal aspossible. One evening in October1999, I sat next to a man at dinner,and we got on very well. He asked meif I would go out with him. I realised very early on that I had totell him I had a stoma, so I suggestedwe went for a coffee. I explained Ihad been very ill and had a stoma. Hehad no idea what I was talking aboutand asked “Have you had amastectomy? When I said “No,” hereplied “That’s all right then”. He nowcalls me his bag lady. He has survivedleaks in the bed, leaks on other

people’s bathroom carpet, etc, etc,and never turns a hair.

But fate hadn’t quite finished with meyet. In February 2002 just as westarted planning our wedding, I wasdiagnosed with bilateral breast cancer.Fortunately, I managed to get better intime for a beautiful May wedding withall my friends and family. We had tocut our honeymoon short for me tostart a six week course ofradiotherapy. I was lucky enough notto need chemotherapy so I didn’thave to wear a wig at my wedding.We have just celebrated our eighthwedding anniversary.

When I came out of hospital afterbowel cancer, my stoma nurse visitedme at home. She asked if I hadeverything I needed, but I had no ideaof the vast range of appliances andaccessories available. I thought thesee through white pouch was all therewas! She told me about irrigation butsaid I probably wouldn’t like it. I didn’t think of asking for moreinformation. My mind was notfunctioning very well after all theanaesthetic. Have you heard of theCRAFT Society? All of us who havehad lots of anaesthetic becomemembers for about a year. It standsfor “Can’t remember a flipping thing!”

What a difference a day in Readingmade to me a couple of years later. I walked past a building which had aplaque saying “ColostomyAssociation”. I went up the stairs anda whole new world opened up. All kinds of information, pamphlets,people who understood and, best ofall, “Tidings”. Other people haveproblems too!

I was collecting supplies from mylocal surgery one day when thereceptionist asked me why I didn’tirrigate. Her husband did, and heoffered to talk to me about it. We metup and, as a result, I contacted mystoma nurse and made anappointment to learn how to do it. It was not a great experience. We satin her office where there was a washbasin and a bucket. It is a good jobnot much fazes me nowadays.I persevered and I am so pleased Idid. I am not one of the lucky oneswho can irrigate every second day. I irrigate every day Monday to Friday.On Saturdays I delay until about 4 or5pm and then have Sunday off. Onweekdays, I put the kettle on firstthing, make a cup of tea and retreatto the bathroom for 20 minutes. By that time, most of the stool has

evacuated and the bottom of theirrigation sleeve can be sealed withpegs. I then make breakfast, read thepaper and take a shower - about 20-30 minutes. If anything else isevacuated, I rinse out the sleeve intothe toilet bowl and then put on mypouch or patch. Mostly I wear aflushable pouch because my stomahas a mind of its own and I can onlyrely on it 99% of the time. Every nowand then it will show me that I amnot entirely in control.

Recently, there have been manyinformative articles on irrigation inTidings. I know that irrigation is notpossible for everyone and we shouldall have the consent of our surgeonand training from our stoma nurse.But for me, the advantages aremanifold. My body image and ameasure of control of bowel functionhave been restored.

I can do anything I did before I had astoma – age permitting. I have takenup horse riding, Pilates, travelled toJapan, Singapore, Australia, Tasmaniaand various places in Europe. Since Istarted irrigating, I haven’t need somany supplies when travelling – haveextra space in my suitcase and lessworry about running out of pouches.Skin allergies and leaking, pancaking,and all those other niggles are thingsof the past. I think I can saycompletely honestly “Everywhere I canhang my hook is home”.

Some of you may rememberJanet modelling at theFashion Show - part of the CA National Conference heldat Reading University in2008...here she is beautifullydecked out in pink, courtesyof John Lewis - Reading.

EditorsComment You can learn

more about irrigation from our leaflet -

‘An Introduction to Irrigation’to obtain your copy

telephone: 0118 939 1537

contact:Colostomy Association

2 London Court East Street Reading RG1 4QL

e-mail:cass@colostomyassociation.org.uk

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

Colonoscopy through the stoma... a patient’s perspective

It is unbelievable to have reachedthe five year point, to have clearblood tests and to be consideredfree from cancer. Thereafter it isrecommended that five yearlychecks are carried out. However, ifthere are indications that the colonhas changed, then your colorectalsurgeon or gastroenterologist maysuggest more frequent check ups.

These check-ups usually include acolonoscopy. This procedure iscarried out by an endoscopistusing a colonoscope. This is along, thin, flexible tube about thethickness of your little finger, witha bright light at the end toexamine the lining of the colon.

The human intestinal tractaverages about thirty feet inlength. The last five to six feet iscalled the colon, also known asthe large intestine. Like a piece offlexible pipe, the colon is hollowwith the inner surface beingnormally smooth. For unknownreasons, some of us grow smalllumps of tissue, or polyps on theinner wall of the colon. Acolonoscopy can reveal any smallabnormalities and take biopsies (atiny piece of tissue for laboratoryanalysis).

Whereas the colonoscope isnormally passed into the colonthrough the anus, for colostomatesit will have to be inserted throughthe stoma. Only one in eightycolonoscopies is carried out in thisway.

Before your appointmentIt is very important that you readthe instructions through carefullyand put into your diary the datesthat you need to be aware of prior

to the procedure. If you are takingmedicines to thin your blood e.g.Warfarin, Clopidogrel (Plavix) orAspirin it is imperative that youspeak to your doctor or theendoscopy department to discusswhether you should stop thembefore your colonoscopy. If youattend for a colonoscopy and youare still taking Warfarin you willhave to have an INR test and if theresult indicates that your blood istoo thin, you cannot have anyabnormal growths removed andwill have to make anotherappointment for anothercolonoscopy (and another 24hours of taking the bowelcleanser!).

Bowel CleansingNow we come to the worst part!The bowel has to be clear so priorto your appointment so you willbe sent a special bowel cleansingsolution with easy to followinstructions. The preparation youreceive: Moviprep, Picolax or Fleetwill depend on your endoscopydepartment. Flavouring it with fruitsquashes (not blackcurrant) canmakes it more palatable and usinga straw will help as apparently thedrink will then miss the taste buds.

The instructions will also adviseyou what you are allowed to eatbut this will depend on whetheryou have a morning or afternoonappointment. Usually clear soups,fluids, clear jelly (not red) andmeat extract drinks are allowed atcertain times prior to theprocedure.

On the day before your test whileyou are taking the bowel cleansingsolution you will be advised tostay very close to the loo!

Drainable PouchesIt is also advisable to ensure thatyou have a supply of drainablepouches, so that you do not haveto keep peeling off the closedpouch each time it fills up. Phoneyour appliance provider and askfor a variety of drainablebags/pouches and make sure youhave tried them out before youhave your colonoscopy, to ensurethe adhesive sticks and there areno leaks. For those colostomistswho haven’t used drainablepouches before, it helps to washthe outlet with anti bacterialsolution after each opening.

Remember to take new poucheswith you as you will need tochange after the procedure.

At the Endoscopy DepartmentYou will have to fill in forms andagree to the procedure which lastsfor about 15 -60 minutes.However, you should be preparedto be there for up to four hours intotal for preparation and recovery.It is advisable to have someonebring you and pick you up. Even ifyou do not elect to have thesedative, you can feel a bit fragileafter the procedure.

When you put on the hospitalgown, remember to have theopening to the front. The nursesmay comment that the openingshould be at the back, but whenyou point out that the colonoscopywill be carried out through thestoma they will have to admit thatyou are right!

In the endoscopy room you will beasked to lie on your back on thetreatment couch and given asedative by injection. Many

There are certain important dates in a bowel cancer colostomate’slife that are a huge relief to tick off in the diary. The six monthcheck up, the first year anniversary, then the second…

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patients remember nothing of theprocedure. Sometimes thesedative can knock you outcompletely and the advice givenby the hospital is that you do notdrive, operate machinery, work ormake any important decisions for24hrs after the sedation and that arelative or friend should stay withyou. You can opt not to have thesedative. This will enable you tosee exactly what is in your colonand discuss with your endoscopistwhat is happening.

Once the colonoscope has beeninserted through the stoma andinto your colon, air is passedthrough it to give the endoscopista clearer view. During theprocedure, the consultant maywant a sample of the lining of thebowel to be taken for examinationin the laboratory. This is called abiopsy. Only a small piece oftissue is removed using tinyforceps and the process ispainless. The endoscopist mayalso remove any polyps (abnormalgrowths of tissue) through a sidechannel in the colonoscope.

PolypsThere are various types of polyps:• Non-cancerous (benign) polypscalled adenomas that couldpotentially become cancerous andneed removing• Harmless polyps that may notneed removing

What happens after acolonoscopy You may feel pressure, bloating orcramping because of the airpassed through the colonoscopeduring the procedure. This shouldpass quickly. When you put yourcolostomy bag back on it will fillup with flatus (wind) so it isadvisable not to cover the filterand to change again, once youhave finished in recovery.

In some cases the endoscopist or

a member of nursing staff willdiscuss with you the findings andwill give you a copy of theColonoscopy report. This will alsobe sent to your GP. He will alsoadvise when you should return forfuture colonoscopies.

For most patients, nationalguidelines recommend a checkonce every five years but if youhave a particular risk of furthercancers or form a lot of polyps,you may be offered check-upsevery one to three years. Itgenerally takes up to ten years forcancer to form from polyps. If thepolyps have re-grown you areentitled to opt for a regular repeatprocedure. It is better to havethem frequently - up to once ayear - to ensure the growths areremoved. For genetic reasons yourconsultant may advise that youshould have them investigatedannually.

You will then be offered a cup oftea and a biscuit while you waituntil the nursing staff agree thatyou are well enough to leave.

What are the known risks of Colonoscopy?Endoscopists who have beenspecially trained and areexperienced in these proceduresperform colonoscopy and polypremoval. However, complicationscan occur and include:

• Perforation or tear through thebowel wall that could requiresurgery • Bleeding from the site of biopsyor polyp removal – usually minorand stops on its own • A reaction to the sedativeinjection

Although complications aftercolonoscopy are rare (less than1:1000), it is important for you torecognise early signs of anypossible complications. The risk ofcomplications is higher when

colonoscopy is used to applytreatment such as removal ofpolyps.

Contact your GP or attend theemergency dept if you notice anyof the following symptoms or ifyou are worried:

• Severe abdominal pain • Vomiting• Fever and chills• Continual bleeding and thepassage of large blood clots onmore than one occasion after apolyp is removed.

When will my GP and I know the results?In many cases, the endoscopistwill be able to tell you the resultsof the tests immediately and maybe able to print the colonoscopyreport for you take home. It may,however, take several days to getthe results if a biopsy has beentaken or polyps removed. Theseresults will be sent to your GP oran endoscopist in the outpatientclinic or on the ward who willdiscuss these results with you.

Written bySue Hatton Executive Trustee Ernie Hulme Vice ChairmanColostomy Association

Kind thanks go to:Dr Iain Murray, ConsultantGastroenterologist (RoyalCornwall Hospitals NHS Trust)who has assisted the ColostomyAssociation in producing thisarticle, which be shortly beavailable in leaflet form.

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On 26th June 2008 our baby son wasborn six weeks early by emergencycaesarean section. He weighed just4lbs 7oz. We named him Alfie. Hedidn’t feed very well because he waspremature. I wanted to breast feedhim but had to give him a bottle aswell because he was struggling tosuckle.

We never knew anything was wrongwith Alfie until the doctors cameround and asked us if he had passedhis first stool. They noticed that histummy was distended and told usthat they needed to take him up tothe neonatal unit. He went into anincubator and was wired up tomachines to monitor him.

Having my baby taken somewhereelse was so upsetting. I cried andcried but knew inside that it was forthe best. I had to stay on the ward asI was recovering from the caesareanwhile my baby was on the floor aboveme. My husband and I spent all ourtime with him and never wanted toleave his side, he was so special to us.The staff on the neonatal unit whereamazing: so caring and supportive.This helped us both.

Alfie was suspected of havingHirschsprung’s disease, which iswhere special nerve cells calledganglion cells are absent in theintestine. It causes constipation andcan create a blockage, which, if nottreated, can cause serious problemslike infection, bursting of the colon

and even death. He had to havebowel washouts to empty his bowels,as he wasn’t able to pass motions onhis own. The doctors did a biopsy andthe results were negative as Alfie was

shown to have ganglion cells. Myhusband and I cried with relief whenwe were told that he hadn’t gotHirschsprung’s disease. After thirteendays in the neonatal unit Alfie was

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

Alfie’s Story...

‘We were given a very special baby boy and whether hehas a stoma or not he is still our son and having a stomadoesn’t change a thing’.

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allowed to come home with us. Wewere over the moon, but that’s whenthe problems started, I struggled tofeed him because he never wantedhis milk. I knew this wasn’t right: hewas being sick and his tummyseemed to get more and moredistended. He used to scream like hewas in pain.

I felt helpless towards him and madeseveral visits to the hospital for him tobe assessed. Finally when Alfie wasfive months old he had a secondbiopsy and it showed that he did haveHirschsprung’s disease and wouldneed to have pull-through surgery toremove the part of intestine with noganglion cells. The day Alfie hadsurgery was a terrible time for us all.We were so worried and upsetbecause we didn’t know how muchbowel he would lose or what the endresult would be.

Alfie’s surgery was over five hourslong. It seemed like forever and all we wanted to do was see him. Thesurgery went well: he had ShortSegment Hirschsprung’s disease,which meant he only had a smallamount of intestine removed. Hemade a good recovery and returnedhome.

However, after surgery Alfie stillseemed to suffer, and a few monthsdown the line we had to restart thebowel washouts again as he wasmuch the same as before, notemptying his bowels and crying withpain. After several hospital visits wefound that he had a narrowing of hisintestine which needed to be dilatedevery few months to stop it closing upaltogether.

We carried on with the bowelwashouts until they stopped workingproperly. Then we started to usesuppositories instead, but only if wereally needed to as this caused a lotof added pain for Alfie. In the end Icould no longer give my son anymoreof these as I couldn’t see my baby inall this pain.

Soon after Alfie became really poorlyand ended up in hospital withsickness and diarrhoea; he couldn’teven keep water down. He wasgetting so weak and his gut neededtime to rest so he was put on TPN -all the nutrients his body neededwhere fed straight into the bloodstream. He had to be put to sleep tohave the TPN tube fitted and at thisstage we discussed with thepossibility of Alfie having a stoma.

The surgeon thought this way hewould have a better quality of life.Then Alfie became so poorly that thedecision was taken out of our handsand we agreed for the ileostomy tobe done at the same time as the TPNtube was put in. Alfie always seemedto be in pain when using his largeintestine; an ileostomy meant hewouldn’t be using it and it could rest.

Alfie has had his stoma for six monthsnow and it was the best thing wehave done for him ever. He now has abetter quality of life and most of thetime no pain. He attends a localcrèche twice a week and enjoysplaying with other children of his ownage. This wasn’t at all possible beforethe ileostomy. He is much happiernow with his stoma and has put on alittle weight and people say he looksa lot better.

As a mother of a child with a stoma ithas been very hard to get used to. Ifound it hard to even look at it afterhis surgery but knew it was there andI had to get on with it, so that’s what Idid. I didn’t want this for Alfie, mybaby, but the decision was taken outof my hands, I had to do what wasbest for him. I started to empty andchange the bags as often as I could toget used to it. Now both myself andmy husband are experts at it.

I am finding out new things to helpAlfie everyday and this includes thesash security and leakage belt; thisbelt has been amazing. The differencethis had made to Alfie’s life. He nowhas no leakage at all and I will nevergo anywhere without it.

I have made several friends throughthe Internet, parents with childrenwith Hirschsprungs disease, and weshare our experiences. Alfie is tooyoung to know he is different fromother children of his age but is sogood when his bag has to be changedor emptied.

As his mother, I have had many upsand downs of emotions through thisjourney and know that it is not allover yet. I have to stay strong for thenext time Alfie has to go into hospitalto undergo more biopsies and dilationof his narrowing. Each time I get alittle stronger and will carry on untilwe get Alfie sorted. What happensnext for Alfie depends on theoutcome of the biopsies - either wayhe has to have surgery again, whetherit be a pull-through or removing thenarrowing of his intestine. We don’t know what the future holds

for Alfie, but as long as we staystrong, together as a family, we willget through this. I believe thateverything happens for a reason: wewere given a very special baby boyand whether he has a stoma or nothe is still our son and having a stomadoesn’t change a thing.

Mrs. Kerry Stafford

What is Hirschsprung's disease

• Hirschsprung's disease occurs in1 out of every 5000 live birthsand is much more common inboys than girls.

• Ganglion cells are formed in thebaby's intestine soon afterdevelopment begins in thewomb. These nerve cells areneeded for intestinal muscles tomove food and digested matteronward by a series of wave-likecontractions called peristalsis.

• In Hirschsprung’s disease theseganglion cells are formed in theupper bowel but do not spread tothe lower bowel, thus normalperistaltic movement cannotoccur, resulting in constipationand blockage.

• In infants, symptoms includefailure to pass meconium withinthe first 24-48 hours, bilevomiting, a distended abdomenand poor feeding.

• Hirschsprung’s disease isdiagnosed by using a number oftechniques. The most vitaldiagnostic tool is the biopsywhereby a tissue sample is takenfrom the large intestine andstudied under a microscope tosee if ganglion cells are present.

Sources of Information and Support

Hirschsprung’s and MotilityDisorders Support Network(HMDSN)Web: www.hirschsprungs.info

Leaflet on Hirschsprung’s diseaseavailable from:CoreTel: 0207 486 0341Email: info@corecharity.org.ukWeb: www.corecharity.org.uk

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

Families and children find time to connect at the August Breakaway Weekend 2010

Breakaway August Weekend 2010was an amazing success! I alwayswonder how we can outdo thelast one - but we do!

In August, we welcomed manynew families to this event, whichwas a delight and a sign that ourdetermination to reach out tofamilies who feel so alone issucceeding!

Jack’s Mum shares herBreakaway experience...

“When we arrived at the YouthHostel I was so nervous. I actuallycontemplated cancelling theweekend!

Having never met any otherfamilies or children withbladder/bowel problems - I felt daunted at the prospect.

As soon as we arrived I felt like I was at home, there was noawkwardness. I felt really at ease.Thinking back those who camethat Friday, were all smiles, it was

just amazing - I felt an instantconnection with everyone.

After the team games, we wentback to our room, as we had anearly start the next day. Jack said,“Mum, I have had the best timeever”.

The hard work that the Trusteesput into this event, so that we canhave a ball is nothing short of amiracle. I can never repay themfor what it has given us.

The friendships that we havemade will stay with us for life, it is like a little piece of heavenour children can be “normal”because they are not alone.

Jack has always had moments ofsuch deep despair, even as hismum I can’t help him as I don’tknow what he’s going through.

Since Breakaway, we have actuallyhad a full week of happiness fromJack, with no dark days where hefeels so very unhappy. I know itsounds drastic but he constantly

tells me he wants to die, when heis in his dark place. This is the firsttime we have had a happy andcontent little boy!

He is counting the days to theDecember Breakaway, and we arekeeping in touch with a few of thefamilies we met, so the little pieceof heaven you made for Jack willcontinue every time we gettogether.

We can’t wait to see you all againreal soon.”

The above experience written byJack’s Mum says it all and is whyBreakaway exists today - tocontinue to reach out to families,and to young people like Jack!

Julie Bastin Chairperson Breakaway Visits

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Join us for our4th Breakaway

WeekendWe’re going backto the forest!

YHANational ForestEast Midlands

29April 2011for 3 nights

Put some smiles on youngfaces, chat and share yourexperiences in a relaxed friendly environment, butmore importantly come

and have fun!

The cost of three nights fullboard accommodation is just £165 per person. All roomsare 2-4 beds and en-suite.There is also a bar, bistro

and coffee shop.

For further information onthis and future events.

Call us on 07903220040

Email us onbreak.away@tiscali.co.uk

Visit our website onwww.breakaway-visit.co.uk

Hannah chats about Breakaway’slatest weekend event and more... I was super excited about this Breakaway as my bestfriend from the hospital was coming with her Mum. Alsomy Urology Nurse Jeni was coming for the wholeweekend! She is my favourite and has helped me andLeah, my friend so much. Jeni was a little worried that wewere going to play tricks on her. It was not me that pushedher in the river it was the activity instructors, but it wasVERY funny!

I went on the high ropes four times with my Daddy, I wastoo scared in May. My favourite activity is canoeing! We did lots of craftson Sunday, making friendship bracelets, painting, sticking and making aterrible mess with glitter- it was really fun!

There were lots of new people at Breakaway this time, which wasexciting. I made new friends and I can’t wait to see them all at theChristmas party.

I am trying to persuade my Mum and Dad to let me do a sponsoredbike ride from my house to Grandma and Grandad’s house. It is nearly30 miles. Daddy is looking to see if he can find a safe cycle route tofollow then maybe I will get to do it. I want to do it so that otherchildren like me can come to Breakaway and have a fun weekend andnot have to bother about being a bit different.

Hannah Adams Aged 9

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

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

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The VACTERL Association SupportGroup was started in 2005 by theparents of Aled Griffiths who was bornin Sept 2003 with the condition.

Aled was born at Derriford hospital in Plymouth in 2003 after a fairly quietpregnancy. Although Gaile was beingreviewed by the hospital every fewweeks because of gestational diabeteswe had no idea how our lives wereabout to change.

The first week of Aled’s life was anabsolute nightmare, first the joy ofhim arriving and then the realisationthat things were wrong. Aled had acolostomy within 24 hours of birth(this remained with him for the firstyear). We were then told of newproblems on a daily basis.

We searched everywhere forinformation about VACTERLAssociation but found that there wasno one in the UK that totally coveredthe wide range of problems that weneeded help with, and this left usfeeling quite isolated.

After things started to settle down andwe were into our many hospital visitsaround the UK, I (Neale) decided thatI needed to find other people insimilar circumstances which led to mecreate a website about Aled(www.alledgriffiths.co.uk). I was totallydevoted to its creation, possibly myway of coping with the stress. Oncethat was completed I decided tocreate a chat room with one of thebroadband providers, this was a smallsuccess but I then realised that Iwanted more than just a chat room, I wanted to help in bigger ways.

Thanks to friends and families whodonated money to get started, wecreated a website, which althoughbasic was enough to start us off.In December 2005 we went live withwww.vacterl-association.org.uk

From then on, things took off...morepeople joined, we met some familiesand spoke to loads more on thetelephone. Eventually we hadmeetings, these have shown to be agreat success, greatly enjoyed by allthat have attended, and each one hasgrown in size. We have members fromthe furthest parts of Scotland right theway down the country to Plymouth.

As a family, things have calmed down,we still have all the hospitalappointments, bowel managementroutines for Aled (which have been agreat success) etc, Gaile is back atwork as a nurse and I am back at seaas a Chief Petty Officer in the RoyalNavy. Aled is to have a bladderaugmentation in November and at thesame time they are doing the ACE andMitrofanoff. This will be a worryingtime, but as with the other eightoperations, we will take it as it comes.

The future for the support group... We want the support group to keepgrowing, have more meetings andhave much more of an impact on howwe can support the families whilethey are going through what may beone of the hardest times in their lives.

How to contact the group:Telephone: 01752 482568Email:General information:info@vacterl-association.org.ukHelp and support: support@vacterl-association.org.ukWeb: www.vacterl-association.org.uk

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

VACTERL Association Support Group

What is VACTERL Association?VACTERL association is characterisedby the sporadic, non-randomassociation of specific abnormalities.Each letter stands for a specificabnormality.

• V: Vertebral anomalies • A: Anal anomalies • C: Cardiac anomalies • T-E: Fistula +/- eosophageal

atresia anomalies (AmericanSpelling)

• R: Renal or Radius anomalies • L: Limb anomalies

A person with three or moreproblems in any combination may be recognised as fitting in to theVACTERL Association. However,VACTERL Association is not adiagnosis. There is no one causefor the association of theseproblems in individuals.

Aims of the support group are:-

• To develop a network that willprovide advice and support tochildren and parents/carers ofVACTERL children.

• Advise the medical profession of the Association.

• Develop a system of promotingself esteem for the VACTERLchild.

• Generate opportunities for theVACTERL child.

• Provide opportunities forVACTERL children to meet eachother and develop supportingfriendships.

Aled pictured here was born withseveral problems which comeunder the umbrella name ofVACTERL or VATER association.

Aled - inspires his parents to formThe VACTERL Association Support Group...

better together

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O S T O M Y C O M M U N I T Y G U T L E S S K A Y A K I N G

Q: Tell us a little about yourself.

A: I am 50. I'm currently studyingPsychology (BSc) at the University ofPortsmouth and am two years throughthe three year course. I had to defer fora year (2009-2010) because I had astroke and needed open heart surgery.My hobbies include playing sports andtravel. I have a brother and two sisters,all of whom are helping with thischallenge, plus, of course, my Mum.

Q: How did your illness come to light?

A: From 2001-2003 I started to developa series of seemingly unrelated ailments.Strange rashes appeared, and my jointsseized up, my nail beds becameinfected. At one point I had over 100mouth ulcers. My Doctor was not able tohelp. By March 2003 I was very ill andlosing weight. My sister took me to thelocal A&E Department where I wasadmitted to hospital. After a few days of tests it became clear that my largeintestine (colon) needed to be removed.Tissue was sent to the pathologylaboratory, and diagnosed. I was advisedthat I had Crohn’s disease.

Q: How did your illness affect yourwork, family, friends?

A: I have not been able to work full timesince 2003 and rely on support fromfamily and friends. Generally, this illnesshas brought me closer to family andfriends.

Q: How have you been supported byhealthcare professionals, family andfriends?

A: I totally rely on St. Mark's Hospital formy continuing care. Family and friendshelp with adapting my feed for holidays,preparing documentation for airlines,airports and customs, constantlymonitoring my health and theunderlying condition, plus support someof my more off the wall ideas (like thiskayaking trip).

Q: What kind of help/treatment doyou require on an ongoing basis?

A: Other than a few pills every day, Ineed TPN (total parenteral nutrition)due to short bowel syndrome. This is alifelong condition so I've learnt theprocedures needed to manage thetreatment. I learnt this over six weeks asan inpatient at St. Mark’s in 2004.

I have a tube emerging from my chest towhich I attach a 3 litre bag of liquidnutrition. It takes about 15 minutes toboth connect and disconnect the feedand this requires a complex aseptictechnique. It’s not rocket science exactly,but it’s really important to make surethat the whole process remains sterileas the feed flows directly into my

bloodstream. I need to do this every dayand it takes about 12 hours for thewhole feeding process to complete.I also have a stoma (jejunostomy) whichtends to have a mind of its own! It canbe either no problem or a totalnightmare. Generally, if something goeswrong it’s more of an embarrassinginconvenience than a full blown crisis.But in any case it’s essential to havesome spare clothing and replacementsupplies close at hand. Local stoma carenurses and St. Mark's Hospital keep meupdated on new equipment andsupplies.

Q: How do you cope with yourillness/condition?

A: Sometimes, I don't cope. It's not easy.I have a room at home full of hospitalequipment and supplies. Sometimes Ifeel like chucking the whole lot out ofthe window. It took a long time before Iwas able to talk openly about what hashappened to me. I've been in therapyfor the last few years to try to help mecome to terms with my changedcircumstances. I have found the mentalstruggle much harder than the physical.

The practical side of things is fairlystraight forward once you know how.The TPN can be difficult to managebecause the procedure calls for a sterileenvironment. Also, it's very restrictingbecause of the sheer volume of suppliesneeded on a daily basis. The stoma canbe a real nuisance when things gowrong at the wrong time, but I usuallyhave enough supplies to deal with thatand can sort myself out quite quickly.

The best thing for me has been to be asopen and honest about everything as Ican. This was very difficult at first, and issomething that I worked very hard on.Early on, I created more difficulties formyself by trying to conceal my conditionfrom others. I'm trying to learn to giveothers the opportunity to accept me as Inow am.

Q: How did the idea for GutlessKayaking come about?

A: I did a bit of fundraising in 2007 andthought, after last year's experience(stroke and open heart surgery) that Ishould have another go now whilst I stillcan. I had many ideas (mainly related tooutdoors and fitness, eg. hikingHadrian's Wall, kayaking the Thames,London Marathon etc.,) which I askedfriends about, this one seemed the mostpopular.

Q: Where are the start and finishingpoints of your journey and how longwill it take?

A: Start: Bridgewater canal, Eccles,Saturday 11th September

Finish: Grand Union canal (Paddingtonarm), Perivale, Friday 1st October

Q: Who is involved and why?

A: Very good friends of mine, who I'veknown for years and can totally rely on:Stephen Cassidy, old Aussie friend, I’vebeen motorbiking with him in the USA,last seen at the bus station in Mombasa,Kenya! Mitchell, another old Aussiefriend, travelled with him in Alaska,Uganda, Finland, India, USA, JP, I am hisoldest son's godfather. We go campingevery year. Steve Mason, a new friend,he has recent paddling experience inUK, and is helping with fundraising.

Q: How will you cope during thejourney?

A: To avoid dehydration I will need to beconnected to my liquid nutrition for 24hours a day. This means I will need towear my backpack, containing the feedand an electrical pump, at all times. Weare restricting our daily target to 12miles in order to ensure that I can copephysically. Because the feed has to berefrigerated up until use, BUPA HomeHealthcare, will be making regulardeliveries to us en route.

Q: What will the funds raised go to?

A: Monies raised will go directly to St. Mark's Foundation, which fundsmedical research and education. Two bigprojects they are currently working oninclude: Intestinal Tissue Engineeringand Intestinal Growth Factors.

Q: Can readers' track your progressonline?

A: Yes, on the website. www.gutlesskayaking.com We will be publishing a blog as the tripprogresses. And, on the map:www.gutlesskayaking.com/blog/what/map

Q: How readers’ can get involved?

A: The website has all the details aboutthe trip, my condition and how todonate etc.,

To donate online:www.justgiving.com/justinhansenor by post: Please send cheques, withyour contact details, made payable to“St. Mark’s Foundation” to this address:

Gutless Kayaking,6 Marksbury Avenue,Kew Gardens,Surrey,TW9 4JF,UK

Gutless Kayaking...an interview with Justin Hansen Justin was diagnosed with Crohn’s disease in 2003, here he talks openly about his patientjourney - and tells us about why he is kayaking 240 miles from Manchester to London!

better together

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I have Primary Progressive MultipleSclerosis (PPMS). PPMS doesn’trelapse and remit or have widelyvarying symptoms but begins, usuallylater in life (I was fifty-eight), withdifficulty in walking and thenprogresses – I began by often turningmy feet over and now fourteen yearson I can’t walk at all, in fact none ofthe bottom half of my body functionsproperly inside or out. I think I amfortunate. I “live” in a wheelchair,manage, stubbornly, on my own withno carers etc. To date I have good useof my hands, arms, eyes and brain.

“So what” - I hear you think as youread this! Well ten years ago, becauseof problems with urinary incontinence,after much pleading, I was “allowed”an indwelling catheter - no morepads, no more getting up at nightwith associated risk of falls. Brilliant,that catheter changed my lifeovernight. Soon, though, I was havingtrouble with my bowel function. Notconstipation nor, unless I ignoredeverything, faecal accidents buttrouble getting anything down into myrectum at all. I had tried everythingthe doctors could suggest, no good.The unpleasant, and time consuming,option was deep manual stimulationthe whole process taking half to threequarters of an hour two, often three,times a day. Visiting friends ormeeting up for coffee was impossible.I gave up all the committees etc I wason because getting to anything ontime was virtually impossible, indeed Iwas hardly going out at all except forpopping down to the local shops for afew essentials.

On my way to my annual neurologicalappointment I was thinking over thenotes I had made. What, I thought, ifthere was a catheter equivalent for mybowel? Then I remembered seeing amention of a colostomy being used asa rare management tool for MS –there was a possible solution. I askedthe MS nurse about it and, frankly, alook of absolute horror came over herface. Not much help likely there I felt.

However, there were other routes. MyGP was supportive. He referred meback to the colorectal consultant. Wehad known one another a long timeand when I made the colostomysuggestion, his face lit up – a solutionfor a problem he had alreadyadmitted, after thorough tests, hecouldn’t solve. In a few months mylife was again changed overnight,literally this time, as the operationwas done at 2am! That was eighteenmonths ago.

I LOVE my colostomy. I am back incontrol of my life. I have been awaywith my daughter and her family andhave now booked a holiday abroad.Magic.

Recently I met a former stoma nurseat an exhibition of “stoma kit”. He hadmet five or six other colostomates dueto MS and ALL felt the same way as Ido. It’s an unusual solution, to what isa common, but rarely mentioned,problem within MS – a complexdisease in all its forms.

Marjorie Corner

S P E C I A L F E A T U R E M U LT I P L E S C L E R O S I S ( M S )

Pathways to a colostomyPrimary Progressive Multiple Sclerosis (PPMS)Marjorie Corner writes - “I remembered seeing a mention of a colostomy being used as a rare management tool forMS – there was a possible solution.”

What is...Multiple Sclerosis (MS)Multiple Sclerosis (MS) is the mostcommon disabling neurologicaldisease among young adults andaffects around 100,000 people inthe UK. MS is most oftendiagnosed in people between theages of 20 and 40, and women arealmost twice as likely to develop itas men.

There are main three types of MS,each with its own characteristics,each unpredictable in its effects.

• Relapsing Remitting MS• Secondary Progressive MS• Primary Progressive MS

Multiple Sclerosis (MS) is the resultof damage to myelin – a protective sheath surroundingnerve fibres of the central nervoussystem. When myelin is damaged,this interferes with messagesbetween the brain and other partsof the body.

For some people MS ischaracterised by periods of relapseand remission, while for others ithas a progressive pattern.

MS can cause a variety of symptomse.g. dizziness, numbness, fatigue,blurred vision, speech orswallowing difficulties, bladder orbowel problems etc. Many peopleexperience only a few of thesesymptoms and it is unlikely thatanyone will develop them all.

For more information contact:Multiple Sclerosis SocietyFree MS Helpline0808 800 8000www.mssociety.org.uk

Readers’PANEL

contributor

Granuloma is a medical term for amass of immune cells that formswhen the immune system attempts tocontain foreign substances, such assuture fragments. A granulomatherefore is a type of inflammationthat causes a small nodule to developdue to the macrophages (white bloodcells). Macrophages specialise in theremoval of bacteria and other micro-organisms or of cell debris after injury.Granulomas are seen in a wide varietyof medical conditions.

What causes Stoma Granulomas?Stoma Granulomas give theappearance of small nodules of hypergranulation tissue, which are usually2mm in size, but they can be biggerup to 10mm in size. They are friable(crumbly) and can bleed easily. Theyoccur mainly at the muco-cutaneousjunction (at the edge of the stomabetween the skin and stoma mucosa)or they can occur anywhere on thesurface of the stoma.

There is no definitive cause for whystoma granulomas develop but thefollowing may give some reason tothem occurring.

• These small nodules of hypergranulation tissue often developwhere sutures were inserted atsurgery and they can appear manyyears after stoma formation surgery.

• Repeated trauma from the stomaflange or pouch can also be a reason.Bleeding from stoma granulomasduring your pouch change maybe dueto over enthusiastic cleaning so begentle with regards to cleaning yourstoma and the surrounding skin.

• Prolonged faecal irritation to an areaof the stoma or an allergic reaction tothe plastic in the pouch may also be apossible cause for stoma granulomasto develop.

• Wearing tight clothing, waistbands orbelts on the stoma will cause afriction force on the stoma surface,which may assist granulomas todevelop.

Patient DiscomfortAs mentioned stoma granulomas cancause bleeding and discomfort. Sometimes the bleeding can cause thestoma pouch to dislodge or, if thegranulomas are large they can preventthe proper placement of the pouchover the stoma. However, not allpatients who have stoma granulomasexperience symptoms of bleeding anddiscomfort. The appearance of stomagranulomas can obviously be visuallydisturbing. The important thing toremember is that they are notharmful. Ask your local stoma carenurse for a review to assess the area.They will inform and reassure youabout the condition and provide youwith a suitable treatment plan.

Treatment & AppliancesStoma granulomas are treated if theybecome painful, uncomfortable or ifbleeding impairs pouch adhesion andcauses leakage problems.

The treatment for stoma granulomascan be variable but the maintreatment option is the application ofsilver nitrate to the stoma granulomasapproximately two to three times aweek. This cauterisation treatment cancause a reduction in the size of thestoma granulomas, as well as causingdiscolouration of the stoma surface.

However, stoma granulomas canfrequently reoccur. Surgical removal isan option but it is usually reserved forwhen numerous stoma granulomasare present either at the muco-cutaneous junction or the entiresurface of the stoma. The application

of astoma paste

(Dansac Soft paste or ConvatecStomahesive paste) to the muco-cutaneous junction can help preventfriction to this area. Checking and re-sizing the stoma pouch aperture toprevent friction trauma to the stomasurface is required. Placing alubricating gel in the pouch (such asHollister Adapt Lubricating Gel orOstoMart OstoZyme Gel) can helpprevent the pouch rubbing on thestoma surface.

Regular checking of your stoma size toensure the aperture of your pouch fitscorrectly is necessary, especially withany weight gain or loss. There is alsosome suggestion that for patients whohave a parastomal hernia, the bulgecaused by the parastomal herniamakes the stoma surface rub againstthe pouch resulting in friction force.Stomas that are short and distorted,resulting in leakage problems can alsohave a higher incidence of developinggranulomas. Ensure clothing, such aswaistbands or belts are not tight fittingover the stoma. Care must also betaken to ensure that cancerousgrowths or any other gastrointestinaldisorder are excluded beforetreatment starts.

ConclusionThe causes and the treatment ofstoma granulomas are not certain butyour local stoma care nurse specialist,is the most experienced person tomanage stoma granulomas.

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

Problematic stomas...Stoma GranulomasWritten by Toni Johnson RN DipNS, ENB 980, ENB 998& Level 3 Stoma Care CourseStoma Care Nurse Specialist, Homerton University Hospital

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C H A T B A C K

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

Dear Editor

I have just read the article ‘TenWeeks Later’ which I think is a verypositive and encouraging article foranyone with a new stoma.

Having had both a colostomy and aurostomy for twenty-two years I canbe classed as someone who is oftenquoted to people about to undergosurgery. I don’t hang-glide or potholebut I returned to full time teaching,play cricket when my husband’steam is desperate for a fine leg, haveridden horses and travelled abroad.

However, like Susan Fifer, I did find itmildly irritating to be told that variouscelebrities had a stoma. My thoughtsat the time were that I was not overconcerned with how the wealthy andprivileged coped but was far moreeager to know how Mrs So and Socoped with a full time job andchildren! But I say to Susan takeheart and carry on, feelings andemotions can change over time.There will be good and bad days butthe bad days do recede.

Ten weeks after my surgery theeuphoria of still being alive, after thesecond bout of cancer, dimmedwhen faced with the enormousamount of equipment and majorlifestyle changes that having two“alien” bits entailed. There wereproblems to begin with: frequentleaks from both stomas, umpteenreadmissions to hospital, infectionsetc. but most of these were teethingtroubles. Problems iron out eventuallyand I have almost forgotten what lifewas like before my stomas.

Susan Fifer’s article offers a lot ofpractical advice but more importantlyI feel shows a very positive spirit forembracing a new lifestyle. Long may

this continue and I look forward toher next article.

Yours SincerelyL. H. (Mrs)

Dear Editor

I received the devastating news that Ihad cancer of the rectum in 2007,just a few weeks before mydaughter’s wedding. The surgeonand oncologist kindly agreed to leavethe treatment and surgery until afterthe wedding. My daughter wasmarried in a tepee in our garden andit was such a beautiful and happyday. Two days later I startedradiotherapy, and had surgery aweek after that. We all know thelong and painful path it takes.Sometimes the despair we feel ismixed with the emotions of beinggrateful that it was diagnosed andthat we are still in the land of theliving.

The only visitor I agreed to have,other than my husband and children,was somebody a friend knew whohad been through similar problemsseveral years earlier, and what aboost that gave me. She arrivedlooking extremely glamorous when Ilooked like my own grandmothertowards the end of her life! Shedidn’t tell me that it was easy andshe told me some very embarrassingstories and was able to laugh aboutthem, but she did show me thatthere was light at the end of thetunnel and that in time I would feellike a human being again. She alsogave me her latest copy of Tidings.

I could hardly bear to open it at thetime. When I finally did I felt quitedepressed at some of the stories, butas I began to get my strength back Iread it avidly and learned many

helpful tips which has prompted meto respond to Susan Fifer’s article. This tip was given to me one yearafter surgery when I attended avolunteer day at The ColostomyAssociation and it has turned out tobe invaluable. I was unwilling toempty my drainable pouch in otherpeople’s toilets because the contentswere difficult to flush away thereforeI didn’t go far from home or I wouldarrive home with a very full pouch.The answer was so simple – line thetoilet bowl with toilet paper – andwhoosh – down it went. That, anddiscovering a bag that is not actuallytraditionally suited to my problem – Ihave a colostomy not an ileostomyand I do not have an inverted stomabut I wear a convex drainable bagbecause it suits my very allergic skinnot to change the bag often, and theadhesive is so good I have only hadone leak in two years. So some ofthe ways that we deal with ourproblems can be unconventional, butthey work for us.

So, I agree it’s a steep learning curveand when I look back at those dark,early days I would never havebelieved that I am now living ahealthy and only a marginallyrestricted life. I know there might befurther hurdles but I have certainlylearned that we are all probablymuch stronger than we think we are.Good luck, Susan.

Best wishesJ.W. (Mrs)

A number of colostomates do find iteasier to use a drainable bag.However, before using a convexappliance, ostomates are advised tocontact their stoma care nurse aslong term use of this type of flangemay cause soreness or bruising.

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Readers’ writesDear Editor

The article, ‘Problematic stomas. Dipsand creases’ in the current issuedescribes the difficulties in applyingcolostomy pouches when the skinaround a colostomy is uneven, forexample, has a pronounced hollow.It suggests a variety of measures thatcan be employed to overcome this.However, one very importanttechnique has been omitted.

I am a retired consultant surgeonand three years ago had to have anabdomino-perineal resection that leftme with a deep hollow to one sideof the colostomy and also a largeprolapse of the colon. At the age ofeighty-eight, I did not wish to have afurther operation and for two yearsstruggled with all the devices youdescribe but could not find a way toapply a pouch that would not leakunpredictably or detach within 48hours. The prolapse was difficult tocontrol.

However, a year ago I wasrecommended to try the OakMedsemi-permeable membraneMicroskin because of its extremeflexibility and ability to adapt easilyto uneven skin contours, such ashollows. After a short period ofexperimentation I found that theMicroskin and drainable bag on itsown (without any washers) couldeasily stay in place for seven days ormore without any leakage. Moreover,I could control the prolapse wellwith a simple elastic belt device. Thishas transformed my life for thebetter.

I should like to recommend thatOakMed semi-permeable membraneMicroskin device should be given afull trial in any problem colostomy ofthis sort. It does require a period offamiliarisation since it is differentfrom the usual appliance. It is easilyapplied to awkward skin surfaces bysmoothing it onto the skin withoutany stretching or deformity of skin orthe membrane and no additionalwasher or paste is used. It is, ofcourse, entirely suitable and

comfortable for use in anyuncomplicated colostomy.

Yours sincerelyD.T. (Mr)

Dear Editor

It is now thirty-four years since I haddiverticulitis which resulted in myhaving a colostomy. The colostomybags tended to leak. When theBullen safe seals (flange retentionstrips) came I put them round theedge of the bags, but they stillleaked from time to time.

My daughter who works as a nurseadvised me to put the bags on mycolostomy first and then put the safeseal on separately round the edge ofthe bags. Since then I have not hadany leaks.

Yours sincerelyE.H.W.

Dear Editor

My wife has Alzheimer’s and in May2004 I took her to our GP to haveher blood pressure checked. Duringthe procedure the GP asked if I wasalright. Oh yes! Caring for someonewith Alzheimer’s is unrelenting - 7day a week, 24 hours a day. Shewasn’t satisfied with my reply andasked me to have a blood testbefore I left. Six weeks later I had anileostomy due to cancer and afterthree weeks when my wife returnedfrom respite care, I was back as themain carer. In October I had areversal and all the plumbing putback in its proper place. Caring is somuch easier when you are normal!

In 2005 I recognised symptomssimilar to those I had in 2004 andsure enough the cancer was back.This time it was in the lower bowelfor which I would require acolostomy. I had twenty-eightsessions of radiotherapy and sevenof chemotherapy and on the 29thDecember the colostomy was formed.

I knew that at some time my wifewould have to go into a care homeas the demands would be too muchfor me to cope with. My change incircumstances coincided with thatmoment and she moved into a carehome without too much upset. Imust admit I had the idea that Imight take up the care role once Ihad recovered, but then I was toldthat there would be a further thirtyweeks of chemotherapy followingthe operation. My wife’s positionchanged from respite to permanent.

Once the chemo was completed Ispent a week visiting friends inNorthumberland and whilst visitingthe Falkirk Wheel had a confrontationwith a lady in a wheelchair as I cameout of a disabled toilet, much likeVanessa described in the spring issueof Tidings. As soon as I explainedabout my bag she was full ofremorse for her outburst.

From this point it was almost like thesecond new life the NHS had givenme was just beginning. Being freefrom the 24hour a day routine withmy wife I needed to rebuild my ownlife. I started playing bowls and afterfifty years took up cycling. In 2008 Icycled the Macmillan way – Bostonin Lincolnshire to Abbotsbury inDorset – and raised about £1500 forMacmillan. Then in 2009 I didanother sponsored ride to theHumber Bridge from Belton inRutland, returning via the East Coast,this time raising almost £2000 forthe Alzheimer’s society. Like BevScott said people became muchmore important.

In November 2009 more chemotherapywas prescribed which turned out tobe more aggressive than I hadpreviously experienced. During thelast chemo session I had aninteresting conversation with anotherpatient, who didn’t have a bag. Shewas having big problems withdiarrhoea. Never thought a bagwould be a winner – just showsevery cloud has a silver lining!

Yours sincerelyF.B.K. (Mr)

C H A T B A C K

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Readers’ writesDear Editor

I first became aware of my Crohn’sdisease over twenty years ago and,having been equipped with ‘externalplumbing’, learned of your excellentassociation.

My attitude to the colostomy wasthat it should be treated just like bi-focals: you either accept it or youreject it. Accept it and you get onwith it: reject it and life will be muchmore difficult.

After a while my stoma prolapsed,which was as intriguing as it wasproblematical. I left an answer-phonemessage for my stoma nurse. Atlunchtime she called me: “John –none of this ‘Mr’, rubbish – comestraight in, I have got a bed for you”.I was welcomed by hospital staff,who proceeded to remove a fewmore feet of ‘pipe’ and restored meto my former external appearance.

Oh my friends be warned by me -You can over-do the pain reliefbutton. I did and hallucinated a bitafterwards. However, the recoveryward nurses were magnificent andhelped me through.

Your journal is great and my copieshave been helpful to friends whohave been anxious aboutprocedures.

SincerelyJ.D. (Mr)

Dear Tidings

I was interested in the article onlaparoscopic bowel surgery in theSummer issue. I had a urostomyoperation forty-four years ago. Iremember not being able to eat ordrink and staying in hospital for along time. Also the pain and sicknesswas terrible. I was stitched fromabove the waist right down and stillhave the scar.

In May this year I had a colostomydone by keyhole surgery. When Icame round from the operation Iwas surprised to be given water todrink. I did not feel sick and wasn’tin pain. This article explains it all. Ihad breakfast the next morning andhome in four days. I live alone buthad friends to come and help me.

Also I’d like to reply to the firstquestion on the dear nurse page. Ialso have this horrible smellingmucus coming from the rectum andneed to wear pads. I was told beforethe operation this would happen andI could have the rectum removed tostop it. On my six weeks check-up Iwas asked about it but decided notto have another operation. I wouldput up with it. If I was younger I mayhave accepted another operation. Ihope this helps the person whowrote the question.

Yours sincerelyM. F. (Ms)

C H A T B A C K

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

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

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

interests of confidentiality we willpublish only your initials and not

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

If you want to be involved in the next issue of

Tidings magazine - simply drop us a line

via email:associate-editor@

colostomyassociation.org.uk or write to:

Associate Editor Colostomy Association

2 London Court,East Street,

Reading RG1 4QL

Look out for our Readers’ Button to see where readers

have contributed to Tidings

YoursRosemary Brierley

Associate Editor

Tidings magazine is available inPDF format. Simply visit:

www.colostomyassociation.org.ukand register to download

or email the editor direct at: editor@colostomyassociation.org.ukto organise a PDF to be sent to you.

Readers’PANEL

contributor

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Looking at Mike Lucas todayyou would never guess what

he has been through sincehis surgery for diverticulitis

in 2007 when it wasdiscovered he had a

perforated bowel. Mike tellsus how the colostomy,

which at first he thoughtwould be temporary,

became permanent andabout the lessons he’s learnt

over the past three years.

Throughout most of my life I havebeen fit. I worked part time on a farmfor years and played several sports,including tennis for teams in theDerby and Nottingham leagues. WhenI left school at fifteen I went to workas an apprentice for Rolls-Royce inDerby. At age seventeen I set myself a target to be the Human ResourcesManager for the Rolls-Royce MainWorks. It took me a few years but Iachieved it. I clocked up forty-threeyears with the company, workingmainly in HR. I found it to be veryfulfilling but it was quite a pressurisedenvironment.

In my mid twenties I developedstomach problems and was neverwithout my packet of Rennies, evenwhen I went to see Derby Countyplay! My doctor treated me forIrritable Bowel Syndrome for manyyears. By the age of sixty-four myhealth became a problem in that Ihad serious stomach pain andfrequent diarrhoea.

I had a colonoscopy which confirmedI had diverticulitis with abscess. I wasnot well and in August 2007 I

underwent a Hartmann’s procedure toform a colostomy. During theoperation my surgeon found mybowel was perforated and he told meafterwards that this was at a lifethreatening stage. No wonder I feltgross before the surgery.

The hospital stoma care nurse met me a week before the operation, putan ‘X’ to mark the spot on mystomach and explained what a stomawas. I did not take much of it in, as Iwas more concerned about thesurgery. After the operation mysurgeon did say that he had found it achallenge. There is no doubt Iunderestimated how I would feel afterthe operation and indeed how long itwould take me to get my strengthback.

At home after the operation my scarhealed completely after five weeks.Then suddenly a bullet size holeappeared on the scar line and it wasweeping. A fistula developed and thebrilliant team of district nursesdressed it for a month before I tookover dressing the wound for thefollowing two years.

R E A D E R S S T O R Y

Enjoying life again...

Mike and his wife, Daphne, at their apartment in Madeira

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Over the two years I graduallydeteriorated due to adhesions fromthe operation. I experienced severepain and vomiting that was originallyoccurring every six weeks or so and,over time, moved to every week. Eachtime I had an episode it would putme in bed for three days. Keeping adiary became pointless, as I couldnever predict how I would be on anygiven day. An attendant problemduring this time was loss of appetiteand weight. My wife, Daphne, is aterrific nurse and seeing me ill andnot eating tested her patience to thefull. My surgeon could not consider asecond operation because I wasunderweight and not strong enough.At the consultations he did say,although I might be looking forwardto a reversal, in my case it could turnout not to be possible.

To regain weight I worked with ahospital dietitian and on my visits toher longed to be overweight likesome of the other patients who alsowaited outside her consulting room.Changing my diet to include blue topmilk and a full English fry up everymorning did the trick. In August 2009after three false starts I enteredhospital to undergo an attemptedreversal and attempted tidy up of theweeping abscess and the adhesions.

Following surgery, which used thesame scar line, my surgeon explainedthat it had not been possible to dothe reversal. I was very disappointedbut was sure that he had done thebest he could. My weight droppedback to eight and a half stone (I amsix foot two inches in height!) and ittook me six months to get up tonearly fourteen stone. I boughttrousers from thirty-two inch waist intwo-inch steps over time to thirty-eight inch waist, which was quite anexpense. It was worth it for peoplebegan to say how well I lookedcompared to the last time they hadseen me. This caused me to thriveand really enjoy being free from painand sickness.

The wound healed but then threemonths later, a fistula formed andcontinues to weep to this day. Icontinue to manage my bag and dressthe wound, which at times gets medown. I worry about cross infection.My surgeon has suggested using silvernitrate caustic sticks to shrink thefistula, which I am trying. I would liketo hear from anyone who can help

me on this. Part of me says I wish itwould stop weeping and another partof me says it is good that it is comingout.

Caring for my stoma...When I first had my stoma in 2007, itdid surprise me that in my hospitalward a few colostomates had decidedthat their partners were going tomanage their bag changes. Thatwasn’t going to be me! I saw mystoma care nurse but at the time wasnot well enough to take in all of heradvice. I started with a two-piecedrainable but moved to what I felt atthe time was a simpler one-piececlosed when I got home. I struggledover the next two years with my bagand experienced frequent seriousleaks…once when I was about topresent the awards at an annualdinner!

In hospital in 2009 a different stomacare nurse suggested I tried anothertype of one-piece closed bag. This didprove to be more reliable for me butnot perfect. In April 2010 I went to myfirst open day organised by a stomaappliance manufacturer and supplierheld in Lincoln and agreed to try theirtwo-piece closed bag. I have got onwell with the change and have hadonly rare, minor problems. This hasboosted my confidence so much sothat I have joined my local stomasupport group and have also agreedto become President of my RotaryClub and Tennis Club.

Daphne and I have an apartment inFunchal Madeira and this year was mybest year health wise since we boughtit six years ago. Our next holiday is acruise around the Caribbean. We havebought our large cases, which areactually much lighter than themedium size cases we are replacingand give me more space for my bitsand pieces.

So what are the lessons I havelearnt over the last three years?

• Colostomates are not all the same.We all have to find what is best foreach of us.

• Talking and listening to others, atsupport group meetings or open days,helps. So does reading Tidings.

• Don’t wait for a stoma care nurse tocontact you. Contact the nurseyourself for them to check yourprogress and offer advice.

• Realise that you worry far more thanthose around you when you have anincident. They do understand andaccept your situation.

• My stoma saved my life, I owe itrespect.

• Set personal targets for the futureand pat yourself on the back whenyou achieve them.

• Remember there are others lessfortunate than you. I, for example, amnot returning from a war zone withseveral limbs missing.

• Always be thankful that your partner,your family and your friends do workhard to make you feel that the futureis bright.

Mike Lucas

Editors Comment If you would like to share

your story with Tidings readers

write to:Tidings Editor

Colostomy Association2 London Court East Street

Reading RG1 4QL

or contact the editor via e-mail:

T I D I N G S | A U T U M N 2 0 1 0 | 4 5

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

Dear Nurse

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

Stoma Care University Hospital

of North Staffordshire

Q: After reading the last issue ofTidings may I query the answer givenconcerning constituents of medicationappearing in the faeces. Many slowrelease tablets contain as part of theirconstitution non-absorbable cellulosecomponents which appear in thefaeces. I am on Felodipine as anantihypertensive agent and notuncommonly see what appears to bean unchanged tablet in my pouchcontents. I am no expert at this butmy local friendly pharmacistconfirmed my suspicions.

A: Tablets may appear in the faecesin the stoma pouch and may beunabsorbed which is why we suggesta review by the GP to investigate thepossibility of having the medication ina different format. Our advice wouldalways be to ask either your GP oryour Pharmacist to check if this is theremnants of the tablet/capsule orwhether the formulation needs to bechanged. This should be done on anindividual tablet basis to ensurecorrect medication and dose isabsorbed.

Q: I have had my colostomy for 12years and irrigate every day. RecentlyI had a colonoscopy which revealeddiverticulitis. When I mentioned this tosomeone they told me I shouldn't beirrigating with this disease as thecolon wall is so frail it could burstwith the water going through. Is thiscorrect? I would hate to have to stopirrigating.Many thanks for your help.

A: If this is concerning you I wouldsuggest a review with your StomaCare Nurse and your Consultant. Theywill be able to inform you regardingthe risks of irrigating with DiverticularDisease and the extent of the disease,

which will have an impact on whetheryou can irrigate or not. There aresome instances where we maysuggest stopping irrigation but this ismade on an individual patient basisand needs to be discussed withalternatives offered.

Q: I was wondering if you have anyideas why I keep getting terriblespasms, it happens when lifting myleg or moving in my seat - it feels asif my stoma is going to burst andmakes me scream. My tummy is sosore.

A: You do not say how recently yoursurgery was done. This may be due tothe recovery process in the early post-

operative stage. However, if yoursurgery was a while ago this could bedue to a parastomal hernia forming oradhesions. I would suggest a reviewby your Stoma Care Nurse who canexamine you and decide on the bestcourse of action. This may include anabdominal support or a referral toyour consultant for furtherinvestigations into the cause of thepain and discomfort.

Q: My father, who is 84 years old,had a colostomy bag fitted earlier thisyear after becoming seriously ill.Although he is better now, he hasfrequent problems with his bagbursting and I was wondering if therewas any advice you can give us onhow to try and avoid this happening.The bag is causing him great distress.Many thanks for your help.

A: This is a difficult question toanswer without a review to examinethe stoma as it can be due to manydifferent things. I would suggestseeing your Stoma Care Nurse whocan remove the pouch and examinethe stoma to identify the cause andoffer suitable solutions. I am sure youwill find them very supportive andhopefully this problem will beresolved and your father will feelmore confident in his appliance.

Q: Mine is a simple question thatnobody seems to be able to answer.Why, since my colostomy operation(Hartman”s, due to acutediverticulitis) in September 2003, amI unable to eat (more than, say, ateaspoon of...) sauces, gravies, friedfoods, mayo, oils, without gettingacute diarrhoea, often occurringwithin an hour of consumption?

These foods never adversely affectedme prior to my op, and I am led tobelieve that Hartman's is undertakenalmost at the end of thebowel/digestive process, so I am at aloss as to why this occurs. Can youanswer this?

PS: Am I losing out on nutrientsbecause of this? Also, I don't seem tobe losing weight because of it!

Your medical questions andqueries about stoma caremanagement are always welcomeand important to us. Queriesreceived by the Editor or CA arepassed to Julie Rust RGN. Dip, N.MSc. CNS Stoma Care to reviewand answer. Answers arepublished in the next issue ofTidings. We are also interested tolearn how you resolve your stomacare problems and how Julie’sadvice has helped you!

4 6 | T I D I N G S | A U T U M N 2 0 1 0

A: All the examples you give containfat/oil and this may not be digestedproperly and may be the cause of theproblem. They should not be causingany problem with nourishment as themain absorption occurs in the smallbowel. This may just be aninconvenience to yourself and mayinvolve a little adaptation as to howmuch and how often you eat thesefoods. I have asked a few colleaguesand they are all in agreement thatthis may be the cause of the problemalthough a question was what colouris the stool on these occasions as itmay be due to a gall bladder problemif the stool is clay coloured and if somay need investigation from your GP.

Q: I am a new (less than twomonths) colostomy owner. Yesterdaywas the first time I have driven myvan since the operation. And I wouldlike to know how others deal with theseat belt and their bags filling withgases and waste. If you can help mewith this, I would truly appreciate it.

A: Many people find driving is not aproblem with the seat belt, howeverthere are a few people who feel thatthe seat belt is causing a problemwith the pouch. I have been informedby several patients that there is adevice available from most caraccessory shops which allows theseat belt to continue to work butmaintains a degree of slack in thebelt therefore preventing a problemwith the belt.

Q: It’s now 11 months since I hadsurgery to remove part of the bowelalso two hernias and adhesions andI’ve had severe abdominal pain eversince having the Ileostomy. I have todrain my pouch as much as 8-10times within 24 hours. Also botheredwith leakages.

I use the washers also the adhesivestrips but it still manages to comethrough. Also bothered with wind asthe pouch blows up like a balloon.

In the last month I had a C.T.angiogram and endoscopy assurgeon thinks the cause is my bloodsupply.

I’ve lost over a stone and don’t haveany energy and very poor appetite. Iam attending the hospital and on lotsof medication which I faithfully take.The only thing to get pain relief is intaking Oramorph which I don’t likebeing on, such a strong drug but nooption.

I’m only existing, and feel I have nolife - the pains and discomfort ofleakage is ruling my life.

Hopefully, you can give me anyinformation that would help me getmy life back on track.

A: You sound like you are reallysuffering at the moment but yourConsultant seems to be trying toidentify the cause and will thendiscuss a treatment plan with you.With regard to the excess windproblem this may be due to your dietand a diary of what you eat and thetimes of the excess wind in relation tothis may be helpful to identify thecause. Also some patients find usingpeppermint (tea, mints or cordial),fennel (as a vegetable, tea, andtablets) or charcoal (tablets orbiscuits) useful to reduce the amountof wind. I would also suggest areview by your Stoma Care Nurse tosee if she can help to solve theproblems with the pouch leakages.I hope this is helpful and you manageto get some relief from the problems.

Q: I had my reversal 16 months agoand have done really well, I am ableto eat almost anything. There havebeen two accidents no idea whatcaused them but it makes you verywary. My big problem extremely badwind - social situations.

Listening to my Doctor I have now cut out all green veg, onions, garlic,weetabix etc., I have porridge forbreakfast and I eat root vegetableswith my dinner which is not aproblem but my dinner plate looksboring. Can you help me with mydiet, I lead a healthy social life,dancing, swimming and holidays etc.,I find the wind very embarrassing.

A: Many patients both with andwithout stomas find several thingshelpful to reduce the amount of windthey have. You sound like you havealtered your diet to the point of itnow being bland. It may be worthtrying the following to see if thesehelp. Peppermint, (tea, mints orcordial), fennel, (as a vegetable, tea,and tablets) or charcoal, (tablets orbiscuits) useful to reduce the amountof wind. I hope this helps.

Q: My Grandfather had a colostomyone month ago and the hospital havesent him an appointment for acolonoscopy next week.

I understand the colonoscopyprocedure, but I was wondering if it isdifferent for a patient with a stoma.Please could you advise me how thisprocedure will be performed. I amconcerned about the strong laxativemedication given before theprocedure as I feel the effects of thismay distress him.

A: Patients with colostomies canhave colonoscopies through thestoma without any major problems. It just needs to be highlighted to thedepartment where he is having thetest done that this is through a stoma(it should hopefully have beenwritten on the x-ray card). Also itwould be worth ensuring that he usesa drainable pouch as the need to takea bowel preparation medicine willcause his motion to be very loose andthe pouch will need emptying morefrequently.

Have you got a medical question or a query

about stoma caremanagement

for Julie?

If so write in and tell us:Colostomy Association

2 London Court, East StreetReading RG1 4QL

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

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

Editors Comment

C O N N E C T I O N S

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

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

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

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

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

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

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

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

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

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

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

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T I D I N G S | A U T U M N 2 0 1 0 | 4 9

We would like to think that we are producing an interesting, balancedmagazine that readers look forward to receiving. To enable us to make surethat we are meeting your needs, and to gather ideas on how we can improveTidings further, we have produced this questionnaire for you to complete andreturn to us.

We would like to thank you in advance for your help with our questionnaire. Pleasecomplete, cut along the dotted line provided and return to:- Tidings Editor, Colostomy Association,

2 London Court, East Street, Reading RG1 4QL, before 31st October, so that we can review the information andreport on our findings in the January issue of the magazine.

Readers’ Feedback Questionnaire

Title: First Name: Second Name:

Address:

Postcode:

Tel: Email:

Male: Female:

Age Group: Under 10’s 11-14 15-25 26-35 36-45 46-55 Over 55’s

Do you have a Colostomy Ileostomy Urostomy None of these

About you...Voluntary information - we would be delighted if you would fill in yourpersonal details using BLOCK capitals and tick the appropriate boxes. (If you wish toremain anonymous - we fully understand). Information gathered by this Questionnairewill not be passed on to any third party - thank you for your kind assistance.

About Tidings...

Overall, how do you rate the Tidings magazine?

Very Good Good Average Not Very Good

How frequently do you refer to your Tidings magazine?

Once per Quarter Once per Month Once per Week Daily

Do you keep each Tidings magazine? Yes No

Do you pass Tidings magazine on to others to read?

Partner Family Friends Carer Other Ostomates GP Surgery

Hospital Support Group/s Other please state:

s’ F

Continued overleaf...#

Which of the following articles/features in Tidings do you read?

Welcome

CA News

Open Door Features

Showcase - New Products and Services

Irrigation and You

Pathways to a Colostomy

A Colostomate Comments

Dear Nurse

Travel Features

Readers’ Stories

Ostomy Community Features

Young Ostomates

Stoma Related Health Features

In Conversation with Support Groups

Aspects of Medical Care contributed by Medical Professionals

General Interest

s’ F

Do you share your Tidings magazine with others, if so how many?

1 - 2 3 - 5 5 - 10 10+

What other features/articles would you like to see in Tidings in the future?

(Please provide details.)

Are there any other comments that you wish to make about Tidings magazine?

Always Sometimes Never

Which of the following articles/features in Tidings do you find the most interesting?

Welcome

CA News

Open Door Features

Showcase - New Products and Services

Irrigation and You

Pathways to a Colostomy

A Colostomate Comments

Dear Nurse

Travel Features

Readers’ Stories

Ostomy Community Features

Young Ostomates

Stoma Related Health Features

In Conversation with Support Groups

Aspects of Medical Care contributed by Medical Professionals

General Interest

VeryInteresting

WorthReading

NotVery Interesting

5 0 | T I D I N G S | A U T U M N 2 0 1 0 #

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

Stoma Care Open Days...Open days give ostomates the opportunity to meet and share experiences with other ostomates. Manypeople attend with friends and family and they can be very sociable events. Open Day events areposted on the Colostomy Association website throughout the year - visit:www.colostomyassociation.org.uk/get-involved/open-days

List of forthcoming Open Days:-

Date: 4th October 2010 Venue: Sports Hall, Spinal

Injuries UnitTime: 10am-3pm Organiser: Northern General Sheffield

SCD, Northern GeneralHospital Sheffield

Date: 5th October 2010 Venue: Bourne Hall, Spring Street,

Ewell, Surrey KT17 1UF Time: 1.30pm-6pm Organiser: Stoma & Colorectal Dept.

Epsom & St. Helier University Hospital - Contact Vicky, Vanessa 02082962640 or Jan 01372735925

Date: 13th October 2010Venue: Devonshire House Hotel,

Liverpool Time: 1pm-4pm Organiser: Royal Liverpool

Stoma Care Dept

Date: Sat 16th October 2010Venue: Heritage Motor Museum,

Gaydon Warwickshire Time: 10am-3pm Organiser: Colostomy Association

Date: 20th October 2010Venue: Coronation Hall,

Ulverston, Cumbria Time: 11am-3pm Organiser: Morecambe Bay Hospital

Stoma Care Dept

Date: 21st October 2010 Venue: Carling Suite, Westland

Conference & Leisure Complex, Westbourne Close, Yeovil

Time: 11am-2pm Organiser: Yeovil District Hospital

Date: 22nd October 2010Venue: Best Western

The Sea HotelSea Road, South Shields

Time: 10am-3pm Organiser: Salts Healthcare

Date: 26th October 2010 Venue: Bannatynes Spa Hotal,

Battle Road, Hastings TN38 8EA

Time: 1pm-4pm Organiser: East Sussex Hospital Trust

Date: 29th October 2010 Venue: Apex Hotel, Dundee Time: 11am-3pm Organiser: Salts Healthcare

Date: Sat 30th October 2010 Venue: Wanstead & Snaresbrook

Cricket Club, Overton Drive,Wanstead

Time: 12.30-3.30pm Organiser: Stoma Care Dept.

Whipps Cross University Hospital

Date: 5th November 2010Venue: Aintree Racecourse -

Princess Royal Suite Time: 10am-3pm Organiser: University Hospital Aintree

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T I D I N G S | A U T U M N 2 0 1 0 | 5 5

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

My name is Christine Davey and inJanuary 2006 after two operations Iwas left with a colostomy.

As I was not recovering as I shouldhave I was re-admitted with furtherproblems with the rectal stump andfinally ended up with a huge DVT(Deep Vein Thrombosis) and spent afurther five weeks in hospitaleventually coming home at the end ofMay.

Although the stoma nurses wereextremely good and helped me ahuge amount, when you eventuallyleave the hospital you are mostly leftalone to cope with your stoma. Theonly other person I knew that had astoma was Mandy, who I met throughGirlguiding which I am very involvedwith here in Cornwall. Mandy came tovisit me in hospital and was a greathelp to me.

After these life-threatening events Idecided at age 62 to retire from

work and start an ‘Ostomist’ and‘Carers’ support group.

In November 2009 with the help ofmy friend and carer Helen and co-opted friend Mandy we started the group!

The stoma care specialist nurses atthe hospital sent out invitations toeveryone in North, East and CentralCornwall and on the first meeting wehad over 40 attendees.

We have now settled to around 20+who attend each month and we meeton the third Wednesday in eachmonth at Lanhydrock Memorial Hall,Lanhydrock, Trebyan, Bodmin, PL305AE between 2pm – 4pm. The groupsname is ‘Lanhydrock Ostomists Group’or LOG for short!

If you would like to join the group:Contact Christine Davey on 01208 831471 or e-mail:chris.davey28@googlemail.com

“no one except another person in the same situation or with a similar experience can reallytruly understand what ‘living with a colostomy’ brings and means to one’s life”...

Christine Davey writes about why she decided to set up a support group...

Lanhydrock Ostomists Groupor LOG for short!

From left to right: Helen Robbins, Christine Davey and Mandy Rowe

Focus on other Support groups inSouth West England

Avon:Bristol Ostomy Self Support(BOSS)Contact: Christina 0117 9075326Joyce 0117 9558236 Rob 01179668021

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

Devon:Devon IAContact: Margaret Bond 01392 447374CAT - TorbayContact: Donna Ashbrook01626 854862

Dorset:Cupid (Colostomy Urostomypouch Ileostomy of Dorset)ChristchurchContact: CA for details

Cupid (Colostomy Urostomypouch Ileostomy of Dorset)PooleContact: CA for details

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

5 6 | T I D I N G S | A U T U M N 2 0 1 0

The following support groups have been revised thanks to your responses from the summer edition of Tidings.

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

Stoma support groups in your region...

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

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

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

Fife:Fife Ostomy Support GroupContact: Ishbel Barr 01592 772200

England - NorthCheshire:Cestrian Support Group Contact: David Burgham 01244310461Countess of Chester HospitalContact: Julie Clements 01244366170Drop in ClinicContact: Angela Perks/DeborahSingleton 01625 661598Stockport Support GroupContact: Angela Simpson 0161 4195059TOMAS (The Ostomates ofMacclesfield and Surrounding Areas)Contact: Kath Wood 01625 875442Warrington Ostomy Support GroupContact: Jane Shaw 01925 662103

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

County Durham:South West Durham Ostomy GroupBishop AucklandContact: Betty 01388 814535 Colin01388 773757 Jen 01325 31266Maureen 01388 818267

Derbyshire:Stockport Support GroupContact: Angela Simpson0161 419 5059

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

Merseyside:I.C.U.P.SContact: Stoma Care Nurse 01516047399Liverpool Support Group CrosbyContact: Barbara Percy 0151 5292842(Afternoon)Olivia Thomas Suite UniversityHospital AintreeContact: Carmel/Pauline 01515292842 (Evening)

Northumberland:Northumberland Cancer SupportContact: Pat Fogg 0191 4102679

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

Tyneside:Gateshead Health NHS Trust (Stoma drop in clinic)Contact: Sister Heather Wilson 0191 4878989 Ext 2221NHS Molineaux CentreContact: Lesley Brown 0191 2195656Royal Victoria Infirmary SupportGroupContact: Gordon Weatherburn 0191 2341109

Yorkshire:Airedale Stoma SupportContact: Jenny Shaw 01535 652516or Sue Hall 01535 210483Bowel Cancer Support GroupContact: Lisa Hall 01422 357171CROPS (Colo-rectal ostomy & internalpouch support)Contact: Gloria 0114 2879503 Dewsbury & District OstomyContact: Janet/Eileen 0844 8118110Rotherham Ostomates Caring SupportContact: Contact CA for detailsScarborough Stoma Support GroupContact: Sister Jean Campbell 01723342388 Amanda Rowe 01723 342446The Hull and East Riding ColostomySupport GroupContact: Pete Smith 07989 565335and Claire Price 07805 978151

Isle of Man:OptimisticsContact: Stoma Nurse Lynne WebbSCN 01983 534009 Stoma Support GroupContact: Carole Cringle 01624 650212

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

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

Nottinghamshire:Nottingham Colostomy, Ileostomy &Urostomy Support GroupContact: Rosemary Brierley 0115 982 7868

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

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

Staffordshire:OutlookContact: Ernie Hulme 01782 324441Joan 01782 710828

Worcestershire:Kidderminster & District CollossusSupport GroupContact: Brendon Drew 01299400843

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

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

Cambridgeshire:OstomisticsContact: Heather Connor 01733768332 Mob: 07757167422

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

Hertfordshire:ColoniseContact: Gill 01727 851556Stoma FellowshipContact: Andrea/Mandy 01438781133

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

Norfolk:Ostomy Friendship Support GroupContact: Contact CAStarsContact: Anne Brown 01603 661751

Suffolk:East Suffolk Ostomy GroupContact: Marion Fisher 01473 311204James Pagett Ostomy Support Group

Contact: Sandra Hutchings 01502585955West Suffolk Support groupContact: Jessica Pitt 01638 515525

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

Hampshire:Southampton Support GroupContact: Carole Summer 02380446779Wessex Urology Support GroupContact: David Morris 02392 361048

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

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

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

Oxfordshire:Oxfordshire Ostomy FellowshipContact: Pat Longworth 01235 524163

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

Sussex:(SAS) Brighton & District Stoma Caresupport Contact: Sylvia Bottomley 01273554407 The Ostomy Friends GroupContact: Jane Quigley 01323 417400Ext 4552West Sussex Princess Royal StomaSupport Contact: Tina Walker 01444 441881Ext 8313

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

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

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

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

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

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

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

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

Editors Comment If you know of a support group not

mentioned in our listings please get in touch

e-mail:editor@colostomyassociation.org.uk

Because a Microskin wafer is the lightest, thinnest,

you forget youre even wearing it.

Why is an

Microskin

FOR MORE INFORMATION AND SAMPLES0800 592786 Visit www.oakmed.co.uk

Giving you more choice.

T I D I N G S | A U T U M N 2 0 1 0 | 5 9

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

I would like to make a donation of £

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

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

My Details:

Title: Name: Surname:

Address:

Postcode:

Telephone number: Email:

Donation & Standing Order FormThank you for your support

Please use this form to make either a Single donation or a Regular donation by Banker’s StandingOrder. Simply complete this form and return by post to the Colostomy Association 2 London Court,East Street, Reading, Berks RG1 4QL. Telephone: 0118 939 1537 if you have any queries.

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

Thank you for your gift

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

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

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

Thanks to the gift aid scheme - we can reclaim money on your donation from the government. Forevery pound you give us, we can claim an extra 28p. For example, a donation of £15 becomes £19.23with gift aid, at no extra cost to you.

I would like the tax to be reclaimed on any eligible donations that I have ever made or will make tothe Colostomy Association until further notice. I confirm that I pay an amount of income tax and/orcapital gains tax at least equal to the tax that the Colostomy Association reclaims on my donation in theappropriate year (currently 28p for every £1 donated).

Signature: Date: / / 2010

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

To the Manager: (Bank or Building Society)

Bank Address: Postcode:

Name(s) of Account holder(s):

Account number: Sort code:

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

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

the sum of £ amount in words:

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

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

Name: (IN CAPITALS)

Signature: Date: / / 2010

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

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

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

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

6 0 | T I D I N G S | A U T U M N 2 0 1 0

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

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

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

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

The Association provides:

• advisory literature, written by colostomates and healthcare professionals.

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

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

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

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

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

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

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

The Colostomy Association is an independent charityfinanced solely by donations. Your help and support isnow more important than ever in this changing world... Our findings show there are approximately 60,000 colostomates living in the UK and with over 6,400permanent colostomy operations being performed each year - we need to be here for them!

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

The Association continues, with YOUR help, to give support andreassurance to both experienced colostomates and those who are

new to ‘living with a colostomy’. Here’s how YOU can continue to support us...simply by making a donation you will ensure oursurvival

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

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

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

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

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

www.colostomyassociation.org.uk

1 Visit the CA website and simply click on the donate panel on the home page.

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

tidings_issue 19 autumn 2010 - colostomy uk

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