Dedicated to Colostomates and their CarersWinter 2007 Issue 8

plus...parastomal herniashints and tips and all our regular features...

inside...

readers share their ownpersonal experiences

real peoplewith real storiesto tell...

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Editorial Team

Rosemary Brierley (Editor)Colostomate & Helpline Volunteer

Jackie DudleyColostomate & Volunteer

Beryl GoddardColostomate & Office Helplineand Support Group Administrator

Gloria HadfieldColostomate & Helpline Volunteer

Gill HerbertOffice Administrator

Ernie HulmeColostomate & Vice Chairman of Trustees

Jo McKenzieOffice Administrator

Design & Production

Jane Wood - Senior PartnerArt Direct Design PartnersArt Direction, Design & Production

John Townsend - Account ManagerLamport Gilbert Limited

Dear Readers..

Something that many people don’t realise whenthey first have a stoma is how many otherostomates there are in this country. It isimpossible to come up with a precise figure,but it has been estimated that there are at least60,000 colostomates and more than 110,000ostomates in total.

From your letters we know that you like to readabout other people: why they needed to havestoma surgery, and how they cope asostomates. In this issue all those whosephotographs appear on the front cover tell theirown, very different, stories.

For those readers who didn’t manage to attendthe Colostomy Association National Meeting inSeptember, we have included summaries of thepresentations on parastomal hernias given by asurgeon, and a nurse specialist. These appear inthe central eight pages of the magazine alongwith two colostomate’s experiences of copingwith a hernia and some suggestions about hownew ostomates can reduce their chance ofdeveloping a parastomal hernia.

When I began editing Tidings in August 2006, Ihad been a colostomate for sixteen years. I wasvery keen to find articles about new topics thatwould be of interest to people, like myself, whohad been reading ostomy magazines for sometime. What I forgot was that not only werelong-standing ostomates receiving Tidings, butso were those facing a stoma operation or justrecovering from it. There needed to be moreabout the basics of living with a stoma. So inthis issue we have a collection of hints and tipsfor new ostomates and also an article on thedifferent types of stoma appliances available.

As I write this letter Christmas is approaching,but by the time the magazine is mailed out itwill be 2008. So I would like to take thisopportunity to wish you all a Happy New Yearfrom everyone on the editorial team of Tidings.

Best wishes,

Rosemary BrierleyEditor

If you have a story, article, letter or any otheritem you would like to appear in Tidings, pleasesend them with any relevant photos or picturesto: The Editor, Colostomy Association, 15 Station Road, Reading Berkshire RG1 1LG or e-mail them to cass@colostomyassociation.org.ukWe will do our best to include them.

Don’t forget to supply us with your name,address, phone number and e-mail address, if youhave one.

Tidings 3

Dedicated to Colostomates and their Carers

insidethis issue of Tidings

The Colostomy Association is a charitable companylimited by guarantee (Registered Charity No: 1113471)that represents the interests of Colostomates andother ostomates. We provide support, reassurance and practical information to anyone who has or isabout to have a Colostomy.

Freephone: 0800 328 4257

For any editorial, telephone or advertising queries contact: 0118 939 1537

Office address: 15 Station Road Reading RG1 1LGTel: 0118 939 1537 E-mail: cass@colostomyassociation.org.uk Web: www.colostomyassociation.org.uk

The views expressed by the contributors are notnecessarily those of the Colostomy Association. Great care has been taken to ensure accuracy, but the Colostomy Association cannot accept responsibilityfor errors or omissions.

Disclaimer: The display, description or demonstrationof products and services or the inclusion ofadvertisements, inserts and samples within Tidings Magazine does not constitute anendorsement or recommendation of these products and services by the Colostomy Association.

Welcome 2

Dear Readers 3

Now our family is complete 4

Choosing the right pouch 6

Readers’ replies...about reversal 8

In the News 10

Update onNew Products and Services 12

A Mother’s Story 13

Breakaway Weekend 14

Hints & Tips for New Ostomates 16

Macmillan Cancer Support 18

Nominations for Stoma Care Nurse Awards 20

Parastomal Hernias 21-28

The road to recovery 30

Marketplace 32

Coping with a Colostomy...and Spinal Injury 33

New Leaflets and New Volunteers 34

Moving On 36

Dear Nurse 38

Readers’ Writes 40

Support Group in the Spotlight 42

Fundraising 44

Support us…Become a friend 45

Donations & Standing Order 46

Upfront 48

Realpeople: Realstories

Now our family is complete

4 Tidings

When I called the helpline to see if there was anyinformation on pregnancy for those of us who havecolostomy, I promised to send in a picture of ourdaughter once she was born. Well things have been alittle hectic. It’s been harder than I thought being amum with a disability. I couldn't have coped withoutthe constant support of my husband and my mum, but six months on we are doing really well! Ela(pronounced Ella!) was born on the 13th January 2007weighing 8lb 2oz!

I’ve had over twenty operations since I was a baby and I really wanted to do the most natural thing in theworld - naturally! I was worried as they initially thoughtI would have to have a Caesarean section. I would have

to be properly anaesthetised as my Spina Bifida wouldhinder the epidural. However, eventually, the specialistagreed I could try natural childbirth.

I had a great pregnancy, which was unexpected. I feltwell and did everything I was suppose to and managedon just Paracetamol! I did get a hernia behind mystoma but this was a small price to pay. We had waitedsix and half years for Ela, had lost babies during thattime and were beginning to come to terms with lifewithout a child. However, my husband, Mark, and Ihave a fantastic relationship. We are best friends as wellas partners and we knew that, although we wanted achild, our life together was happy - then along cameEla! I hardly dared breathe whilst I was pregnant but

Tidings 5

as the weeks passed I dared todaydream of the day she would bepart of our family. When we went tosee Robbie Williams I was that worriedthat the noise would affect her that Isat in my wheelchair at the concertwith my huge pillow wrapped aroundmy tummy! - but it was a greatnight!

The day that I went into labour I wasnot nervous at all. I had the poolfilled up at the hospital and just hadgas and air. I was doing so well, then,towards the end, the baby turned toface the wrong way and the scartissue on my spine swelled against thepressure and she got well and trulylodged! That was agony and I had togo to theatre where she was born byventouse and I ended up with a lot ofstitches! The anaesthetist gave me abig shot of something and I cameround to see Mark holding a tinybundle! I was so disappointed that I'dmissed seeing her born but she wassafe and so was I.

We now have a very cheeky little onewho knows she’s adored! My life hastaken some unusual turns throughoutthe last thirty years and having a babyto love was something I didn't thinkwould ever happen to me. It’s hardenough looking after myself. I am solucky to have a wonderful husbandand Mum who have been there forme; their support has never wavered.

It wasn't until I was a Mum myselfthat I could really appreciate all thatmy Mum has been through. I used tothink I was the one having a bad dealbeing in hospital having things doneto me but it must have beenharrowing for my Mum looking onand feeling helpless. Yet she spurredme on to walk even when at GreatOrmond Street they said I wouldn't.She used to buy me an Enid Blytonbook every time I successfullycatheterised myself at six years old. In fact I have a whole library as I gotone after each operation as well!

When I had my colostomy I wastwelve years old; it was something Iwanted as nothing could be worsethan daily enemas and the pain.However, it was still hard to acceptespecially as my teens were just roundthe corner, but My Mum got methrough it, always making me feelspecial. I can’t imagine how shecoped; I truly hope and pray that Inever have to do that with my owndaughter.

As for my husband, well he makes mefeel as though I’m the most beautifulwoman in the world and has givenme so much confidence. I shall neverforget the first time I told him I had acolostomy: I kept saying, ‘I’ve had anop on my tummy that’s still there’and he kept saying, ‘What kind ofop?’ Eventually I came out with itand said, ‘I’ve got a colostomy!’ Iremember cringing with my headdown thinking oh well this is the end!He said. ‘Oh thank goodness for that!Is that all? I thought you were goingto say you had a third arm!’ Ten yearson and we are still as much in lovewith each other and now our family iscomplete!

Well thank you for listening to mystory. I really appreciate it. I am stillat home with Ela. I haven't gone backto work yet. I do love my job as aPersonal Banking Manager at LloydsTSB but I can’t bear to leave her justyet! When I do, it will only be for two

days a week! We've just built abungalow at the bottom of Mum'sgarden which will really help mephysically. It’s almost complete but asI’m off work, funding is low, so we'llhave to wait a little longer but we areperfectly happy living with Mum andmy stepdad, Richard.

I used to talk to people who werehaving surgery done as I think as longas you remain high spirited and regainyour smile you can get throughanything. Life is for living; you've justgot to hold on to the courage to getout there and live it!

Best wishes to you all.

Jo LoganJuly 2007

Cheeky little baby Ela

My life has taken some

unusual turns throughout

the last thirty years and

having a baby to

love was something

I didn't think would ever

happen to me... Life is

for living; you've just

got to hold on to the

courage to get out

there and live it!

After surgery it may be a while before thestoma starts working. When it does it willfirst of all produce wind and then a fairlyliquid output. So on returning from theatrea new ostomate will usually be wearing apost-operative drainable pouch. This willmake it is easier to release wind and toempty fluid motions. The pouch may bemade of transparent plastic so the nursingstaff can check on the stoma. They willwant to observe when the stoma begins towork and make sure the join between theskin and the bowel is healing well.

Before you leave hospital the stoma carenurse will select the pouch which is mostsuitable for you at the time. If you have anileostomy the output from your stoma willalways be fairly liquid and you will beadvised to continue with a drainablepouch. If most of your colon was removedwhen your colostomy was formed theoutput may also be liquid. Again adrainable pouch may be best. There aremany, many different types to choose fromso it is not likely to be same as you werewearing when you came back from theatre.

Up until a few years ago almost alldrainable pouches closed with a clip. Thisrigid plastic clip was often uncomfortableto wear and had a habit of getting lost atthe most inconvenient moments! Now mostdrainable pouches have a system whichinvolves rolling up the opening andfastening with Velcro or soft ties. Thismakes it a lot more comfortable, with nochance of losing the clip. The newestpouches also have an easy-open drainageoutlet, which is much easier to keep clean.

If you still have most of your colon intactthen after a period of rehabilitation yourmotions will probably be formed ratherthan liquid. So your nurse will suggest aclosed pouch. Again there are very many tochoose from.

Closed pouches come in all shapes and sizesfrom mini to maxi. Minis have a smallcapacity for times when you know yourstoma is unlikely to be active or for going

swimming, while maxiscan be worn for longer periodof time or by those who have ahigh output during the night. There arealso stoma caps which are suitable forintimate moments or for thosecolostomates who irrigate.

If you have concerns about disposing ofused pouches your stoma care nurse maysuggest a toilet-flushable version. This hasan outer pouch and an inner liner. When itneeds changing the outer pouch, which isunsoiled, is removed and can go in the bin.The inner liner contains the motion and isflushed down the toilet. At present onlyone manufacturer produces this type ofpouch. Many people may feel this is idealfor them but there are others for whom itis not suitable.

Both drainable and closed pouches can beone-piece or two-piece. In a one-piecepouch the flange (the pad of adhesivewhich sticks to the skin) comes alreadyattached to the pouch. In a two-piecesystem the flange, or base plate, isseparate: it can remain in place around thestoma for two to four days. Used pouchescan be removed and replaced as required.The advantage of this is that the skinremains undisturbed whereas frequentremoval of a one-piece system can lead tosore skin.

In the past most two-piece pouches clippedto the base plate with a circular“Tupperware-like” seal. Some ostomatesmay find it difficult to position the flangecorrectly around the stoma. They can findit easier to use this type of system becausea carer can help to fit the base platecorrectly. Then the pouch can be changedas required without assistance because it ispossible to hear and feel when the pouch issecurely attached.

However othersfind the “clip-on”

system quite bulkyand rigid, and may

be concerned that itcan be seen beneath

tight clothing. This has led to thedevelopment of coupling systems whichrely on adhesive. Those with limited handmovement due to arthritis may find iteasier to use this two-piece “stick-on”system.

Whether it is a one-piece or a two-piecethe most important requirements of apouch is that the seal around the stoma issecure and the adhesive is skin-friendly.Hydrocolloid has been used for many yearsto make the familiar yellow flanges andbase-plates. All the manufacturers havetheir own secret recipe and ostomatesgenerally find that one manufacturer’sproduct suits them better than another.

One recent innovation is Microskin, ameans of attaching the pouch directly onto the skin with a transparent layer as thinand flexible as “Clingfilm”. It follows thecontours of the skin so ostomates whohave creases or crevices around the stomamay find it helps to prevent leaks.

For those whose stoma is retracted belowthe surface, or flush with the surface, ofthe skin there are pouches and flanges withbuilt in convexity to give a good seal. Theseconvex systems should only be used onadvice from a stoma care nurse.

Another development is the flange whichcan be moulded into shape, rather thancut. Those who have irregularly shapedstomas and problems with faeces leakingonto the skin may find this innovationhelpful.

Many of the products mentioned above areadvertised in Tidings. If you feel one mighthelp, fill in the reply slip or ring themanufacturer for samples. Or you could seea range of stoma appliances firsthand byvisiting a stoma care open day.

6 Tidings

Choosing...the right pouch

Remember it is best not to try too manydifferent pouches in a short space of time.Give each one a few days if you think itmight help. If it doesn’t, go back to yourusual product for a while before tryingsomething else. Also if you are tryingsomething new it might be best to do soon a day you’re not going out – just incase.

There are those of us who are happy withthe pouch we are using and say ‘If it’s notbroke don’t fix it’. However, if you arehaving problems remember there are abouta dozen companies manufacturing ostomyappliances and each one has a very widerange of different pouches. There is one out there to suit you.

Tidings 7

Drainable pouch

Two-piece system

One-piece system • Every time the pouch is changed it has to be accurately positioned aroundthe stoma.

• Frequent changing of a closed pouch may lead to sore skin.

Types of Pouch/Bag

Closed pouch

Bag or Pouch

Up until now in Tidings we have used theword bag when referring to a stomaappliance. However, this article uses theword pouch instead.

Is it better to talk of pouches or bags?Let us know what you think.

Mix and Match- Different pouches for different occasions.

The same pouch usually comes in closedand drainable versions and is producedin different sizes. If you normally use aclosed pouch it is a good idea to have afew drainables and possibly a smallersize as well. Drainable pouches will beuseful if you have a stomach upsetwhich results in loose motions, or whiletravelling it might be easier to emptyrather than change a pouch. Andremember to take a small supply onholiday – just in case.

If you use a two-piece system, it is stillpossible to “ring the changes” –drainable and smaller pouches andstoma caps are all available to fit thesame base plate.

A colostomy “plug” is also available.However, it is only produced by onemanufacturer and it should not be usedwithout consulting a stoma care nurseto ensure it is suitable for your type ofstoma.

• More suitable for coping with formed motions.

• Replaced with a new pouch one to three times a day.

• One manufacturer produces a flushableversion, which can be disposed of down the toilet.

• More suitable for coping with a liquid output

• Does not require changing as often as a closed pouch.

• Fewer pouches are used.

• Easily emptied, prior to disposal.

• Flange (base-plate) can remain in place for two to four days, which is kinder to the skin.

• The “stick on” system may be easier forostomates with arthritis.

• The “clip on” system may be easier forvisually-impaired ostomates.

• Less bulky and more flexible.

• May adhere more securely to scarred or uneven skin.

• Less suited to managing a more liquid output.

• The pouch may need to be changed and disposed of while away from home.

• Some people may find it difficult toempty a non-flushable pouch, prior todisposal.

• May be difficult to empty if the output is of a thicker consistency.

• Careful cleaning of the outlet isrequired.

• Clip or fastening can be uncomfortable.

• Some people may find it difficult to keep the flange (base-plate) clean.

• Leakage behind the flange may remainundetected and lead to sore skin.

• Some systems are fairly rigid and bulky.

Advantages Disadvantages

8 Tidings

Readers’ Replies...about Reversal

When I discovered that a reversaloperation would be possible under myemployer’s BUPA scheme I naturallyjumped at the possibility and went tomy GP for advice. He referred meback to the surgeon. The consultantoutlined all the pitfalls of having thereversal operation and also touchedon the benefits. He told me of therisks that could be envisaged and leftme very much to make my owndecision without influence. Heindicated that, if I agreed, he wouldlike to use the laparoscopic (keyhole)technique to carry out the reversalprocess.

After making a number of enquirieslocally, consulting the internet, and,more importantly, discussing it withmy family and the stoma nurse team Idecided that it was a risk well worthtaking. I discovered that myconsultant is a leading exponent oflaparoscopy and I felt that I would bein very safe hands.

I was booked in for a colonoscopy tocheck that I had healed well enoughand that I was a suitable candidatefor the reversal. The results appearedfavourable but I was left under noillusions that if, when on theoperating table, laparoscopy was notconsidered appropriate the reversalwould be undertaken usingconventional surgery.

On May 3rd, just over four monthsafter my Hartmann’s Procedure, I hadmy reversal. Four hours later I wasback in my room delighted to learnthat the laparoscopic technique hadbeen successful! I had three additionalsmall wounds on my stomach and avery neat “purse” stitching on the siteof my stoma.

I was well enough to return homethree days later and the district nursevisited me every other day to changemy wound dressings. The three smallwounds healed quickly and the stapleswere removed after ten days. I was inalmost no pain and was able to be upand about immediately on my returnhome. I admitted to some tirednessbut this was only to be expected.

Remember I am now sixty-seven! Thestoma wound naturally took muchlonger to heal as the flesh had to bekept clean and granulate from theinside. The purse stitch was removedafter twenty days and I felt fine.

I had only one minor scare after beinghome a week or so when I had aquite severe bout of diarrhoea andpassed quite a lot of blood. Phonecalls to my GP and to my consultantreassured me and after a couple ofdays I was back to normal.

I returned to full-time work fourweeks after the operation and I havehad no relapses, pain, or problemswhatsoever apart from a littletiredness. My bowel function returnedto normal very quickly and has beenregular ever since. Six months on Ifeel fine and have just had my finalsign-off from the consultant. With, Ihope, many years ahead of me I amsure the reversal was the correct stepfor me.

George wrote to tell us why hedecided against a reversal.

I found the articles on reversal in thelast issue of Tidings very interesting asI have a colostomy as a result ofbowel cancer three years ago. Afterchemo I made a full recovery and wasoffered a reversal and even got as faras the pre-op stage - my surgeon wasexcellent throughout, not pushing meone way or the other.

But at sixty-four years old after yearsof IBS I feel as well now as I felt inmy twenties.

With the help of my wonderful wife Ihave very little trouble with the bagand am now as regular as clockwork.

The point I am trying to make toanyone contemplating a reversal isthat it is a very personal decision andif you have any doubts don’t bepressurized into it, don’t feel acoward, don’t feel guilty and, mostimportantly, don’t feel a failure.

Regular readers mayremember in the summerissue of Tidings, Andrew Leggwrote of his experience ofdiverticular disease and hisHartmann’s procedure to forma temporary colostomy.Following our feature onstoma reversal Andrew wroteagain to tell us about thekeyhole surgery he had toreverse his colostomy andupdate us on his progress.

Andrew Legg

Tidings 9

Sue wrote to relate herexperiences and also to stand upfor those ostomates who havedecided not to be reversed.

I was given an end colostomy duringemergency surgery in July 2006. I hadsuffered a perforated bowel due todiverticular disease and an abscess. Ihad no idea I had diverticulitis butnow had a reason for having beencontrolled by my bowels for years:never being able to leave the houseunless I knew journey time andlocation of toilets along the way andat my destination.

Following the usual highs and lowsthat come after surgery I soon gotused to my new friend and christenedhim “Bob”. I returned to health andwent back to work after two months,not the three months recommendedby my surgeon. I started doing yogaagain and then began running everymorning. I now had to weigh up thepros and cons of having “Bob” takenaway from me and be ready with adecision for my surgeon when Ireturned to see him after six months.

While trying to make up my mind Inoticed that my life had taken on anew type of freedom: I could go outany time of the day I wanted, I didn’thave to cut telephone calls short togo to the loo, I was going out all daywith friends and family and myfitness level was better than ever, infact I was living my life!

When I returned to see my surgeon Itold him I didn’t think I was ready fora reversal. ‘That’s fine’ was the reply.He felt that since there were noproblems with my stoma, no prolapseor a hernia, and I was happy with ithe would rather not put me throughthe trauma of surgery if he didn’tneed to. However, the option is alwaysthere for me if I can’t cope with“Bob” any longer or I develop aproblem.

Now over a year later I cannotimagine being any other way. “Bob”and I are very happy and my bowelsno longer control me. My husbandsays I am far more relaxed than I haveever been and we enjoy a better levelof intimacy than we ever did.

I often ask my husband if he wouldprefer me back to normal. His reply is‘But this is normal isn’t it?’ That forme says it all.

I know keeping your stoma is not foreveryone but for some of us it reallydoes give you your life back and witha little patience and full acceptance ofyour situation you can learn to loveyour “Bob” too.

Mary, aged seventy-nine, hasbeen through a reversal andwould like to share her feelingswith readers having to make adecision about it.

Having come through three years ofcancer in the late 1980’s with severaloperations and chemo andradiotherapy, I went into remissionduring the 90’s. However, it cameback in 2000, this time in the rectumwhere it joins the colon. Part of thecolon and the whole of the rectumexcept for about an inch at thebottom (anus) were removed and Iwas given an ileostomy. ‘Don’t worry,’the surgeon said gaily. ‘As soon as thecolon has healed, we’ll join you all upagain and you’ll be back to normal.’What a joke!

After the reversal operation, I cameround to more pain than I hadexperienced in any of my formeroperations, which included two foradhesions and blockages, one kidneyremoval and a hip replacement. Thatwas a foretaste of the next two years.I had no control whatsoever over myoutput and had frequent “accidents”. Ilearnt that this was because the colonproduces waste all the time. It is thenstored in the rectum to be evacuatedonce or twice a day – but I had verylittle rectum left! My anus got sosore, I could hardly bear to wipe it,and it is still sore to this day. So mysocial life was severely curtailed.

After two years, I was transferred to abigger hospital and I came under thecare of a colorectal specialist. Iexplained the situation and asked fora colostomy. He said I should havehad one in the beginning. So I hadthe colostomy operation on ChristmasEve 2004. It was a long operation

because the whole area was thick withadhesions.

So what I would like to say to readersis, ‘Ask for more information beforedeciding. If you have had your rectumcompletely removed for whateverreason, don’t have a reversaloperation. If only your colon has beenaffected, then when healed, it couldsafely be joined up again and youwould have no problems, I suppose.’

Three different opinions.How do you decide?

To help you make the mostappropriate “informed” decisionfor yourself, two stoma nursespecialists produced a simplechecklist which we published inthe last issue of Tidings.

• Make sure you understand whyyour stoma was formed in thefirst place.

• Ask your consultant or nursespecialist to provide you withdetailed information regardingthe proposed surgery and therealistic outcome you can expectin relation to hospital stay,length of recovery and expectedbowel function - both in theshort-term and long-term.

• Consider what your quality of life is like with a stoma.

• Consider what your quality of life would be like without a stoma, taking into account all the surgery and treatmentthat you have had.

• Speak to people who haveundergone a similar procedure.

• Ask for a written summary of your consultant’s plan.

10 Tidings

In the News...

Ray Goddard, Office Manager,Trustee and Treasurer, says…

‘On behalf of CA I would like to takethis opportunity to thank those whoused the draft wordings, from the lastissue of Tidings and wrote to theirM.P.s. We have been advised of morethan fifty M.P.s, who have replied totheir constituent’s letters and theMinister of State for Health, DawnPrimarolo, is, I am sure, now fullyaware of the depth of feeling thatthese consultations have provoked.

We are now anxiously awaiting theoutcome of this round of consultationsand as soon as they are published we will provide an update on the News Page of our websitewww.colostomyassociation.org.uk.

I am sure that this will not be the endof the line for these proposals, but restassured that, whatever the outcome,we will continue to be actively involvedin making sure that colostomateswithin the U.K. do not suffer areduction in either the service thatthey currently receive or the range ofappliances available.’

Salma Ahmed winsAward for Achievementthrough Adversity

The Lord Mayoressof Bradford presentsfourteen year oldSalma Ahmed withthe trophy forwinning first placein Manningham’sYoung People’sAward for Achievement throughAdversity. You may remember Salmawrote about her experience of Crohn’sdisease and having a stoma in thesummer issue of Tidings.

ColostomyAssociation Trusteesat the House of Commons

On the 11th December, Sue Hatton, Beryl and Ray Goddard attended areception at the House of Commonswhich was hosted by Dr Roger BerryM.P. and Stephen O’Brien, the shadowMinister for Health. This event,sponsored by Coloplast Ltd, providedrepresentatives from patient andnursing groups, with the opportunity tomeet M.P.s and explain exactly whatthe proposed changes in the supply ofostomy appliances and the provision ofservices would mean to them. Seniorstaff from Coloplast were also presentand they explained how the proposalscould result in significant reductions inthe range of products that they wouldbe able to offer to their customers.

By the time you read this magazine thelatest round of Department of Healthconsultations will have closed. Aresponse has been formulated on behalfof the Colostomy Association and wasdespatched to meet the 28th Decemberdeadline.

Is Margaret the oldestperson with a Colostomy inthe UK?Margaret Sinclair, nee Robinson,celebrated her 100th birthday on 31stDecember last year.

Born in a cottage in Ramsbeck,on theshores of Ullswater, Margaret loves toshare memories of a happy childhood.At fourteen she would cycle fromMossbank near Gretna to work at Carrsbiscuit factory in Carlise. At twenty-four Margaret left work to marry EdwinSinclair and they had one son, James.Now Margaret is a great, great, greatgrandmother.

She lives at home alone with supportfrom family, “home carers”, a regular“Crossroads” visitor and others. Despitebeing profoundly deaf and partiallysighted, Margaret has an excellent senseof humour and often wonders if she isthe oldest person in the UK who has acolostomy and laughs about this. Untilvery recently she proudly and quitemeticulously managed all aspects of herstoma care.

Diamond WeddingAnniversary

Lily and John Young, from Stevenage,celebrated their Diamond WeddingAnniversary on 22 November 2007. Lily,aged eighty-one, had major surgeryfour years ago and now has acolostomy. Two years later a tumourwas found on one of her kidneys andshe underwent a second round of majorsurgery.

Lily has recovered well and enjoys lifewith her family and close circle offriends. Her husband, John, has lookedafter her well as she has done for himduring their many years together. Theyare “over the moon” to be celebratingsixty years of marriage and spent theirspecial day with their family whilstholidaying in Cornwall. They are lookingforward to the arrival of their first greatgrand-child in January.

From Abroad...

Changes in eligibilityto the French HealthService1. Newcomers to France who do nothave an E106, or an E121 (as retirees),and are not intending to work inFrance, will not qualify for admission tothe health service, and will have to fundtheir own medical treatment, eitherdirectly or by purchasing full privatehealth insurance.2. Those who are currently in the healthservice by virtue of an E106 form willbe excluded from the health servicewhen it expires, and will have to fundtheir own medical treatment, eitherdirectly or by purchasing full privatehealth insurance, unless they take upemployment in France. A possibleconcession for those whose health issuch that they would be unable to workor to obtain private health insuranceremains unconfirmed.3. Those currently residing in Francewho do not qualify for an E121 becausethey are below state retirement age, arenot in possession of an E106, are notworking, and are in the health serviceby voluntarily paying personal socialsecurity contributions from their privateincome, will not have the right toremain in the system after a graceperiod of six months, which will end onthe 31st March 2008. If they wish toremain in the health service they willhave to take up employment in France,otherwise they will have to fund theirown health care. 4. Those over retirement age, andtherefore holding an E121, will beunaffected, and will remain in thehealth service.

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12 Tidings

Update...on new stoma care products and services

Four companies contacted us withdetails of stoma care appliances andservices that have been introducedwithin the last few months:

Opus Healthcare have recently launchedDeoGel, a deodorising and lubricating gel.As well as deodorising pouch odour it canalso reduce pancaking.

The deodorant is especially formulated tobreakdown odours rather than mask themwith another scent. The lubricant reducesstatic and thus the likelihood of theplastic sides of the pouch stickingtogether.

This product is available on prescription(order code: 2010–200ml bottle).Samples can be requested via www.opus-healthcare.co.uk

Cui International has just launched a newrange of fully washable and reusable bedand chair pads that offer high absorbencyrates. The proprietary fully breathable 3-layer system ensures complete protectionin the event of an accident or leak whilstoffering optimum comfort. The pads areespecially useful when going away butideal for every day use as well. For furtherinformation and contact details please seemain advert on page 26.

OstoMART have introduced a brand newodour neutraliser, cinnamon &sandalwood, to compliment their excellentrange of OstoMIST sprays. This fragranceis particularly suitable for anyone lookingfor an alternative to fruit and flowers. Cinnamon & Sandalwood OstoMIST isavailable on prescription from your usualsupplier in either a 50ml or 100ml ozonefriendly pump spray. (order code: CSW1-100ml spray, CSW2-50ml spray).

If you would like to try this new fragranceplease call OstoMART on 0800 220 300.They will be pleased to post a sample outto you free of charge.

SecuriCare have informed us about StomaCare Clinics that have recently beenestablished in the community.

Welwyn Garden City(No appointment necessary)

Venue: QE II Hospital ClinicCansearchHowlands.

Day: Every Wednesday.Time: 2 – 4pm.

Venue: Queensway Health ClinicHatfield.

Day: First Thursday of the month.Time: 2 – 3pm.

Venue: Hoddesdon Health CentreHigh Street.

Day: Second Thursday of the month.Time: 2 – 3pm.

Venue: Hertford County Hospital Clinic C.

Day: Last Thursday of the month.Time: 1 – 2pm.

Wycombe

Venue: Amersham Health Centre.

Day: Third Tuesday of the month. Time: 2pm – 3pm.

Venue: Cross Keys SurgeryHigh StreetPrinces Risborough.

Day: First Thursday of the month.Time: 2pm – 4pm.

Venue: Knaves Beech Clinic Securicare MedicalCompass HouseKnaves Beech Business CentreLoudwaterHigh Wycombe.

Day: Every Wednesday.Time: 1pm – 4pm.

For an appointment at clinics in the Wycombe areaPlease telephone 01494 426235.

Information on new products and servicesreceived before 22nd February 2008 willbe considered for inclusion in the nextissue of Tidings.

Ray Goddard Office Manager, Treasurer and Trustee

Colostomates’ Comments

Have you tried a new pouch or

other stoma care product

recently?

If you found it to be superior to

what you were previously using or

it solved a stoma related problem,

do write and tell us about it.

Dedicated to Colostomates and their Carers

Tidings 13

When you fall pregnant, you don’tever expect anything to go wrong.You have a vision of a little baby allsmiles and happiness… Well, as wefound out, it does not always happenlike that.

Our daughter was born nearly tenweeks early; she was born with cloacalmalformations. This was ourintroduction to the world of stomas.Hannah had her colostomy formedthe day after she was born, and thenat eight months old she had majorreconstructive surgery. Her colostomywas reversed just before her firstbirthday. However, after years ofconstant soiling, in October last yearshe had the Malone ACE or MACEoperation. This allows daily enemas,or washouts, to be administereddirectly into the bowel, rather thanthrough the back passage.

Life with Hannah and her colostomywas daunting at first. When I signedthe consent forms I didn’t even knowwhat a stoma was. I just knew sheneeded it to survive. The constanthospital visits and trips to theatre forone thing or another do become partof life after a while. The enemas, the“bowel management ” was anexperience I never wish to repeat butnow we have the ACE, and everythingis working great.

Hannah is now six years old. The onething we as a family have felt,through our journey so far, is lonelyand isolated. Questions like ‘She’s gotwhat?’ and comments like ‘Oh I’m sosorry’ are not what you need to hear,and give you that feeling in the pit ofyour stomach that only anotherparent can understand.

I searched online one night,researching stomas and such like andI came across an online supportcommunity called Ostomyland. Here I met Rachel and we becameclose friends in real life. I moaned and vented my feelings to her onenight just after Christmas last year,and from there came the idea for“Breakaway”. The idea was to get thechildren and the families together,share experiences and have fun!

It was a lot of hard work, sleeplessnights and tears. NO ONE could haveexpected “Breakaway” to be the hugesuccess that it was: children fromsuch diverse backgrounds, withdifferent medical histories, socialising,playing together, creating life-longfriendships.

Breakaway was exactly what we hadbeen looking for as a family. We nowhave no need to feel alone andneither does anybody who was there.I am really proud of what Rachel andI have achieved.

Breakaway 2008 is now in the processof being organised and bookings arebeing taken. Most of the familiesfrom 2007 are coming along again,but we would love to see more newfamilies this year.

Julie Bastin

Realpeople: Realstories

A mother’s story...

Hannah, now six years old

14 Tidings

In August 2007 I spent a weekendaway with a group of thirty people:Mums, Dads and children, aged fromfive to twenty, and I returned feelingmost humble! Going away withchildren suffering with bowel andbladder dysfunction might seem notthe most dynamic thing to do…but,my, oh my, you would be very wrong!

These are children with a variety ofbowel and bladder problems such asCrohn’s disease, ulcerative colitis,congenital malformations orintractable constipation. This meantthat they had one or two of thefollowing surgical formations:colostomy, ileostomy, ileo-anal pouch,urostomy, Mitrofanoff, neo-bladder oran ACE - not that anyone would havehad any hint of their medicalhistories.

I had the most amazing time with thisgroup in a very wet and windy Wales.We walked in the rain, we canoed inthe rain…in fact everything we didwas in the rain. Did it dampen thechildren’s enthusiasm? Not a bit of it, and that being the case it wasinfectious, we all just got wetter andwetter but enjoyed every minute ofthe weekend.

It started with us all meeting in thelounge of the Youth Hostel in BrynGwynant, all very subdued and sittingin little groups. After supper we begangroup activities led by pro-activeinstructors…in the rain! From thattime forth we were all friends; talkingabout medical problems was notdifficult. Listening to the childrenasking what they “had” and what wasits name was brilliant and so normal!That horrid word “normal” just didn’thave a place; we were all just finewith whatever we had or didn’t have.In fact I felt the “abnormal” one bynot having had any surgery - not thatI was made to feel different.

The next two days were filled withwalking, gorge walking, which had tobe curtailed due to the fast runningriver, as was the climbing due to therain, and, my favourite, canoeing. Ohwhat fun you can have when soakedto the skin, wearing buoyancy vestsand helmets, canoeing across the lake

to jump off a rock into ice cold water.Well some of the children jumped in,so there was no option, but for a madfifty-seven year old stoma care nurseto jump in too! It was almostexpected…and what fun!

The finale came with a disco evening.Children, who would not talk at thebeginning of the weekend, nowsinging and dancing together was asight to behold. As they sang “We arethe Champions” at the top of theirvoices Rachel and Julie, theBreakaway organizers, were reduced totears…wonderful!

Exchanges of emails and addressespreceded tearful goodbyes, but I’msure the contacts made will belongstanding.

I hope that Breakaway will go fromstrength to strength; I’m not sure thatRachel and Julie really know whatthey have let themselves in for. I amdelighted I was able to attend thisinaugural weekend and hope to bethere in 2008.

Lesley NickellCNS Stoma Care ConvaTec Ltd

BREAKAWAY

14 Tidings

success...

BREAKAWAY2008

Breakaway again...Adventure weekendspecifically for kids with stomas and their families...

16 Tidings

hints and tips...for new ostomates

When changing yourcolostomy bag

Use a peg to ensure your clothes arefree of the stoma area. Try joiningtwo pegs with a piece of cord longenough to hang round your neck andclip a peg on each side to secure andsupport your clothing in a morebalanced way.

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

It is not unusual for slight bleeding tooccur where your bowel is stitched tothe skin, so handle your stoma withcare. However, if there is bloodcoming out from inside the stoma itis important to seek medical advice.

Try putting your new, cleanflange/bag in a warm place e.g. ontop of a radiator or under your armfor a few minutes to warm theadhesive which will help it to stick.

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

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

Many stomas are not round. Makesure that the flange fits as snugly aspossible. If the hole is too big this canlead to sore skin. If it is too small theadhesive will be up against the side ofthe stoma and won’t stick, allowingmotion to collect behind the flangeand cause leaks.

When measuring your stoma, use thebacking paper of the flange as apattern. Place it over your stoma thenlook in a mirror to check that it is theright size.

Gentlemen who have a problem withbeing hairy around the abdomencould try using a “Ladyshave”. It givesa really smooth shave, is much saferthan an ordinary razor and lessclumsy than an electric shaver.

To protect the stoma while shavingcover it with the lid of an aerosol can.

A water-soluble antiseptic can be usedafter shaving to prevent a rash or skinirritation.

When showering with a colostomybag still on, remember to cover thefilter so it doesn’t get wet and stopworking. If you have problems dryingthe outside of the bag try using ahairdryer, but switch it to the lowestsetting so there is no risk of meltingthe plastic or damaging the stoma.

If you have sensitive skin, before usinga new type of appliance always patchtest it on a small area - the other sideof your tummy is best - in case of areaction to the adhesive.

Changing your bag away from home

Don’t forget your spare kit (stomabag, wipes, scissors, disposal bags etc.)when you go out…and remember torenew it on a regular basis.

Many colostomates find it easier tochange their bag in a wheelchair-

accessible toilet where there is a washbasin and a bin for disposal on hand.See back page for details of how toobtain a RADAR key which openslocked toilets all around the UK.

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

Try flushing the toilet before you useit just to make sure that it is actuallyworking. There is nothing worse thanfinding out too late that it doesn’tflush at all!

Clothing

You will usually be able to wear thesame clothes as you did beforesurgery.

Ladies who find wearing normaltights uncomfortable could trymaternity ones. “Hold up” stockingsare another option or “knee highs” ifyou are wearing a long skirt.

Wearing skimpy briefs which finishbelow the stoma or high-waistedpants that rest above the bag willprevent the waistband pressing on thestoma which may affect itsfunctioning or lead to leakage.

Several companies make specialistunderwear with an inside pocketwhich supports the stoma bag andkeeps it away from the skin.

Tidings 17

If the stoma is on the waistlinegentleman may find using anelasticated belt or braces preferable to wearing a rigid belt.

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

Patterned swimwear will camouflageany bulges.

Stoma bag covers, which will help toprevent your bag sticking to your skinin the heat, are available from somemanufacturers.

Always wear a support garment whenlifting heavy objects. Consult yourstoma care nurse for advice on whichtype is most suitable for you.

Dealing with:

Odour

Most stoma appliances have a filterwhich incorporates a deodorizer, soodour shouldn’t be a problem.However, if you are not happy withthe filter on the bag you are currentlyusing there are other bags made bydifferent manufacturers that youcould try.

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

Odour could mean leakage or thefilter may have come into contactwith the contents of the bag makingthe deodorizer ineffective. If sochange your appliance as soon aspossible.

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

Wind

Drinking peppermint tea orpeppermint oil in hot water can helpto reduce wind.Eating fennel or drinking fennel tea isanother remedy.

Pancaking

This is when the output collectsaround the stoma and sometimessqueezes between the flange and theskin instead of going into the bag.One of the reasons this happens isbecause there isn’t enough air in thebag and so the output doesn’t take adownwards turn.

Lubricating your bags with baby oil orone of the many products availablefrom the various supply companieswill help the motion to fall to thebottom of the bag. Squirt a little oilor gel into your bag and give it agood rub around before you stick iton. Take care not to get any on theadhesive as this can reduce theeffectiveness of the seal.

Covering the filter with one of thesticky patches that are supplied ineach box of stoma bags will prevent avacuum forming inside the bag.

Leakage

Ask your stoma nurse about rings andwashers which can help to give areally good seal around the stoma.

Remember:

• Some medications may change thecolour and/or odour of your output.

• Antibiotics may cause diarrhoea.

• Painkillers may cause constipation.

• Enteric coated or modified releasetablets are designed not to dissolveuntil they have reached the latterpart of the intestine, so they mayappear unaltered in the stoma bagwithout having any therapeuticeffect.

Your doctor or pharmacist will be ableto advise you if alternative medicationwithout these side effects is available.

Travel and Holidays

Pack twice as many appliances as youwould normally use.

Always take the details of your stomaproducts and contact numbers foryour supplier, in case you need toobtain further supplies.

When flying, take your supplies incarry-on luggage. If this is notpossible spread them across severalsuitcases in case of loss.

On aeroplanes, scissors are notallowed in hand luggage, so prepareany bags you may need during theflight before you leave.

Drainable bags are more convenientwhen travelling, and essential if youmight get struck down with“Pharoah’s Revenge”. To make themeasier to empty introduce a few dropsof gel or baby oil before fitting.

Do not leave your supplies in the carin hot weather as the adhesive maymelt.

Only drink bottled water when visitingcountries where the water supply issuspect.

In hot and humid weather you mayfind that perspiration causes theflange to lose its adhesion. Checkregularly throughout the day andchange your bag if there is a problem.

When swimming remember to put thesmall adhesive patch, supplied withyour bags, over the vent-holeotherwise the filter will become dampand stop working.

hints and tips...for new ostomates

18 Tidings

Macmillan Cancer Support...

The presentation continued with anoutline of the history of the charity. Itbegan in 1911 and in 1924 becameknown as The National Society for CancerRelief, the aim being to provide practicalhelp to anyone diagnosed with thiscondition. Last year the name waschanged to Macmillan Cancer Support,because it was felt that this better reflectsthe aims of providing practical, medical,emotional and financial supportthroughout the cancer journey; the wordrelief implied the control of pain for thosewhose prognosis was poor.

Another misconception is that Macmillanis only involved with funding specialistnurses. Yes, the charity does do this: thefirst Macmillan nurse was funded in 1975.By the year 2,000 there were 2,000nurses; today there are 3,000 as well asother health professionals i.e. occupationaltherapists, physiotherapists, radiographersall funded by Macmillan. It is usual tofund the post for three years then theNHS will take over, but the Macmillanname remains.

Source of SupportFunding nurses is only one of the manyways Macmillan provides a source ofsupport for those with cancer.

Macmillan’s national CancerLine takes35,000 calls every year.

Macmillan has a directory of 750 self helpand support groups all over the countryand provides grants of between £500 and£1,000 to help set up such groups. Thecharity also helps to run “Living withCancer” courses.

Macmillan provides grants to peopleaffected by cancer: ranging from grantsfor equipment in the home to clothinggrants for people who have suffered severeweight loss.

Other projects include:A benefit helpline and local benefitsadvisors who have taken on a total of7,000 cases and have helped people toclaim £111/2 million in welfare benefits towhich the claimants were entitled.

“Bridges”, a scheme based in Birmingham,in which volunteers help in a variety ofways, for example providing a lift tooutpatients for treatment, or feeding thedog when people need to stay in hospital.

“Cancer environments” which aim toimprove the surroundings in which cancerpatients are cared for and treated.

Force for changeMacmillan campaigns on behalf of cancerpatients on a variety of issues including:

Establishing standards of care.

Exemption from hospital car parkingcharges for cancer patients undergoingtreatment.

Making it easier for people affected bycancer to get travel insurance.

All this costs £100 million a year, 90% ofwhich is raised by fundraising: collections,marathons and other events.

Macmillan’s ambition is to reach everyoneaffected by cancer by the year 2010.

How to apply for a grantfrom Macmillan

Having cancer can beexpensive in many wayse.g. prescriptions, aspecial diet, child care or travel to hospital.Macmillan provides aguide called “Helpwith the Cost ofCancer” which explains whatfinancial benefits are available andshows how to get that help. Theguide and further information canbe obtained from health centres,libraries, information centres etc.,Macmillan websitewww.macmillan.org.uk or byphoning 0800 500 800

Today there are three timesmore people living withcancer than there werethirty years ago.

One in three people will be diagnosed withcancer at some time in theirlives.

At the CA National MeetingMark Wood, DevelopmentManager, gave a veryinteresting talk aboutMacmillan Cancer Support.

He began with a short filmshowing some of theindividuals involved with thecharity including cancerpatients, nurses andfundraisers.

At the end they all raisedtheir hands in salute andsaid the words ‘I amMacmillan’.

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20 Tidings

Stoma Care Award

Sponsored by

FOCUSING ON THE VERY BEST IN NURSING PRACTICE

is delighted to be sponsoring the Stoma Care Award 2008

Coloplast offer a range of products and services. Our commitment is to develop these, in cooperation with end-users

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In the bowels of the NGH (Level one on Huntsman ‘B’)Lurk several stoma nurses who tend the likes of me.

These peristomal people, armed with powder, tape and wipesKnow what to do to comfort you, should you contract the gripes.

They cart around more bags and pipes than any Scottish clanA “washout’s” no abandoned game, but a quick flash in the pan.

Adept with gloves and kidney bowls, curved scissors and a measure,They size you up, there’s no escape, to them, it is pure pleasure.The pat they give your tailored pouch says “Didn’t I do well?”But when it comes to DIY and you cut the hole – “Oh, hell!”

Without these kindly nurses who have a real “bum deal”We’d never know the meaning of designer bag appeal.

Mini, midi, two-part, velcro’ed, one-piece, take your pickIt’s not long till you know the ropes, & changing them is slick.

So thanks to all you ladies for your tender, loving care ~You made my darned colostomy easier to bear!

A grateful patientThe Northern General Hospital

Ode to the Stoma Nurse

Tidings 21

Parastomal Hernias

Chris Harmston a Specialist Registrar at the SouthWarwickshire Hospital spoke about parastomal hernias fromthe surgeon’s point of view.

Mary Jo Thompson, a Nurse Specialist, described a herniaprevention programme for ostomates at the Southern Trust,Northern Ireland.

In the following pages we provide summaries ofboth these presentations.

Also:

Two colostomates write about their experiences of copingwith a hernia.

Adrian March, a CA trustee, who has been an AmateurSwimming Association and National Coaching Foundationtutor for many years, answers an ostomate’s question aboutswimming. Adrian also suggests how new ostomates mightreduce their chance of developing a hernia.

Parastomal HerniasA hernia is a weakness in the abdominal wall that allows the contents to bulge out.When associated with a stoma it is called a parastomal hernia.

At the Colostomy Association National Meeting last September there was considerableinterest in the two presentations on this topic.

• Have you had a parastomal hernia repair?• Was it successful?• Has the hernia returned?

Please write and let us know about your experience.

What you need to know about Parastomal Hernias

Parastomal Hernias

At the CA NationalMeeting in September2007 Chris HarmstonMBChB, MRCS, SpecialistRegistrar at theWarwickshire GI Unit ofThe South WarwickshireHospital, gave a very clearexplanation of what aparastomal hernia is andwhy they occur. He wenton to discuss how they canbe prevented and what canbe done once they havedeveloped.

Most people have heard of hernias –Gazza had one! A hernia is aweakness in the abdominal wall thatallows the contents to bulge out,forming a lump or swelling. They area common problem and form around10% of the general surgical workload.

A parastomal hernia is a hernia relatedto an abdominal wall stoma. It isdifficult to say how common these arebecause different studies have comeup with a wide range of figures. Thisis because patients have been askeddifferent questions or been followedup for different lengths of time.However, it is clear that the incidencevaries with the type of stoma. Studieshave shown that between 4% and48% of patients with an endcolostomy have a hernia, for a loopcolostomy results vary from 0% to30.8%, for an end ileostomy 1% to28% and a loop ileostomy 0.6% to2%. So it seems that colostomates aremore likely to have a hernia thanileostomates and that they are morelikely to occur with an end ratherthan a loop stoma (although this is tobe expected as temporary stomas areonly in place for a short time). Mostparastomal hernias occur in the firsttwo years, although it has beenknown for them to develop after morethan twenty years.

Although most hernias do not giverise to symptoms, ostomates who havethem often notice a swelling at thestoma site or experience milddiscomfort or a dragging sensation. Ifa section of bowel becomes trappedwithin the hernia this can cause anobstruction and the stoma may stopworking. A hernia around the stomamay also lead to problems in fittingan appliance.

To confirm the presence of a stoma adoctor will take a history (askquestions) and then examine you. Thedoctor may ask you to remove thepouch so that he can observe the areaaround the stoma while you arestanding up and lying down. He willask you to cough or raise the upperpart of your body off the examining

couch, both of which increase thepressure within the abdomen makinga hernia more apparent. A doctor willalso use a finger to examine theinside of the stoma.

If further tests are required then anultrasound scan may be arranged. ACT scan may occasionally berequested if it is suspected that a loopof bowel may be trapped by thehernia. It is possible that in the futureMRI scans may be used.

What causes a hernia?

Like other hernias there are generalfactors which make the chances ofdeveloping a parastomal hernia morelikely. These include being overweightor, on the other hand, malnourished.An increase in pressure within theabdomen or cancer can alsocontribute. Steroid drugs can makeabdominal muscles weaker and as weget older muscle tone diminishes,both of which increase the risk of ahernia.

To minimize the chance of aparastomal hernia developing,surgeons aim for the smallest size ofhole that allows for the passage ofthe bowel without it being so tightthat it affects the blood supply to thestoma. A CT study has shown that anopening of more than 3cm increasesthe chance of a hernia occurring.Bringing the bowel out through therectus abdominis (“six-pack”) muscleis generally considered to reduce thechance of a hernia although there isno convincing evidence that this isnecessarily the case.

Prevention

Some surgeons use a synthetic meshas a supportive structure around thestoma when it is formed to prevent ahernia developing in the future. Theresults of studies to evaluate theeffectiveness of this technique areencouraging. However, they have onlyinvolved a small number of ostomateswho have been followed up for ashort time, so much larger studies are

22 Tidings

needed before there is sufficientevidence of success to make this aroutine procedure. Also the insertedmesh has a theoretical risk ofinfection as it is a foreign material,but the studies have not confirmedthis risk.

Managing a hernia

Most hernias can be managedconservatively i.e. without resorting tosurgery. An operation is considered inemergency situations i.e. strangulationor obstruction, or if there is difficultyin maintaining a seal between theskin and an appliance, leading tofrequent leakage. A hernia repair mayalso be undertaken during surgery foranother complication or if the herniais a source of pain. Where the herniais causing embarrassment, because itis apparent even when fully clothed, asurgeon may be willing to operate,provided the patient is aware of therisks.

Surgical repair

There are different methods ofrepairing a hernia; some will becarried out through an incision in theabdomen (open surgery) others can bedone laparoscopically (by keyholesurgery). A local tissue repair i.e.making the hole smaller, is a relativelysimple procedure, but there is a 50%to 100% chance of the herniarecurring. Relocation i.e. moving thestoma to another site, is a biggeroperation involving a larger incisionbut the chance of the hernia recurringis lower at 30%. A mesh repair wasfirst described in 1977. Today for thistype of operation the recurrence rateis only 8%; problems with infectionare infrequent and rarely does themesh have to be removed. This hasbecome the “gold standard” repair.

Chris Harmiston concluded his veryinteresting and informativepresentation by pointing out thatparastomal hernias are common andusually do not cause a big problem.However, he reassured us that, whereappropriate, they can usually beeffectively treated. Also at the timestomas are formed surgeons can takesteps to prevent hernias occurring inthe future, and it is hoped that thiswill become a routine procedure.

24 Tidings

Parastomal Hernias

In November 2000 I was diagnosedwith squamous cell cancer, a form ofskin cancer attached to tissue in thepelvic area. At the time I was toldthat the tumour was too large tooperate on. I would needchemotherapy followed byradiotherapy to reduce its size. It washere that my cancer journey began fora second time. I had beenunfortunate enough to haveHodgkin’s disease when I was in myearly twenties and it was thought thatthe two might, in some way, berelated. The next six months or sowere quite traumatic. Then in May2001 I had surgery. I was warned thatI might have two stomas, but in theend I finished up with a non-reversible colostomy following aperineal resection.

Following the operation everythingseemed fine and after a couple ofmonths I was able to start irrigationas a regular routine. I now have fullcontrol over normal bodily functionsmost of the time.

Within about six months of surgery Istarted to develop a parastomalhernia. At first it was about the sizeof a tennis ball, but gradually itincreased until at times it is more likehalf a melon. The hernia itself has notbeen too much of a problem.However, it is very important to takecare of it. Initially I was prescribed a

specially made, corset-like belt. Theaim is to keep the hernia undercontrol and a good belt is really thecorrect answer. The difficulty has beento find a belt or appliance that iscomfortable enough to wear all daylong.

I have had a number of discussionswith my surgeon regarding the hernia.His response has been that he can dosomething with it, but it would meananother major operation and there isno guarantee of 100% success. Thereal answer is that, as long as I canput up with the inconvenience, it isbetter to leave well alone. There arelots of things that can be done today:for example placing some mesh wherethe stoma is made initially. However,whilst this may help in the early days,there is no long term guarantee.

Living with the hernia has not beenso bad provided I take care to wear asuitable support during the day,particularly if I am going to doanything strenuous. I have tried anumber of belts and appliances: themost successful have been a Sash beltand an Eakin support belt, I use theSash belt if I am doing anythingstrenuous or if I have not worn a beltfor a couple of days, and the Eakinbelt most of the time.

A word of warning though: do notignore your parastomal herniaotherwise you could be in trouble.About three years ago I had not wornmy belt for two to three days and Ihad irrigated as normal but withoutmuch success. Later that night(Saturday) I began to get a lot ofdiscomfort, and in fact the painbecame almost unbearable so I rangthe emergency doctor at about 2.00am. His advice was to ring for anambulance and get into hospitalwhich I did. After some morphine tokill the pain I began to relax,although the pain was still there.

I had developed a strangulated hernia:believe you me it is not pleasant andextremely painful. Once on the ward Iwas able to lie down and graduallythe pain dissipated. On the Mondaymorning my surgeon happened to bedoing his round on the ward. Heexamined me and showed me how tomanipulate the bowel back throughthe hernia. Since that time I havetreated my parastomal hernia with alot more respect.

At times I feel it is a nuisance, but atleast I have got through the cancerjourney and survived and am enjoyinglife to the full, so the respect for myhernia is really worth while. Livingwith a parastomal hernia isn’t so badas long as you remember to besensible and wear the correct support.

Coping with a Parastomal HerniaTwo colostomates share their experiences

Paul Foulger

‘Yes, you have a hernia!’ I was toldcheerfully by a Stoma Care Nurse atan information meeting.

I wasn’t cheerful at the news. I washorrified, even though I had suspectedit already.It was a few years since I’d had mycolostomy and it had always bulged abit but the bulge was getting biggerand the hernia diagnosis left methinking it was soon going to beenormous.

The surgeon I consulted reassured methat of course it doesn’t happen thatway but that the hernia would mostlikely grow gradually morepronounced. I am certain, though,that it would be bigger than it is if Ihad not started wearing a support.First of all I bought a ‘girdle’ from alady’s underwear department and,being handy with scissors and asewing machine, fashioned a hole in itto pull my stoma bag through. Thiswas OK but a blessed nuisance everytime I answered a call of nature,especially if the bag were not empty.Then I was fitted at the hospital witha “corset”, complete with hole again. Iwore it all the way home in the car –about 30 minutes – but couldn’t copeany longer than that. The corset wastight – too tight – but the hole theyhad made was too big so not a greatdeal of use.

The pressure needs to be immediatelyaround the stoma, where the problemis. A problem I had until then wasthat anything tight over the stoma

meant that when it got active I endedup in a mess because my bag gotforced off. It was always like that.One New Year’s Eve, all dressed up inhigh heels and skirt for a change, Ihad to go and change in the middleof a celebration dinner when “thatsmell” drifted up from my lap. Thatwas when I remembered why I hadn’tworn tights in a while! So then Ifound the SASH belt. This was such arelief. Made to fit the bags I wore, itworked where needed and held mybulge in quite well.This was the point at which I shouldhave gone back to my exercise classes.When I was diagnosed with rectalcancer in 1996 I was fitter than everin my life and enjoyed aerobics classesand step aerobics especially. Aftersurgery I started swimming a soon asI could and got myself back to realfitness. Then the hernia. In my panic Igave up exercising ‘for a while’ until Ifelt I had my situation under controlagain. But, getting older, I never seemable to regain the stamina I once hadand that is something I really regret.These days I have to be content withwalking.

So I wore the SASH every day forsome time. Then, when I wanted tolook my best for a wedding in thefamily I asked my Stoma Care Nurse ifI could learn to irrigate.My surgeon agreed, she taught mehow and I am still successfullyirrigating.This means that I can wear controlpants (or tights!) between irrigationsbecause my stoma doesn’t work then.They hold in my bulge and, I believe,stop my hernia from getting worse.

I really would not like to be withoutsupport, especially when out walkingbut even indoors or just round andabout. A stumble, a missed step, and Ican feel my hernia give a bit more.

My surgeon said that he would repairit if I wanted him to, but warned thatanything other than a complete re-siting of the stoma would not berecommended. This would probably

involve a few hours of surgerybecause it is extremely likely thatthere are adhesions from the originaloperation to hinder progress. As myGP says, you don’t volunteer for suchextensive surgery when it isn’t vital.

I felt at first quite aggrieved that no-one told me I ought to wear asupport, especially whilst exercising.There’s no proof that was whatcaused my hernia but I can’t helpfeeling that it might have helped if Ihad worn a belt from the start. Thatwasn’t the advice given ten years ago,but I understand that there is nowevidence to suggest that stomapatients who wear a support of somekind are far less likely to develop ahernia.As it is my hernia is unsightly when Iam not dressed and uncomfortable ifI don’t wear a support. But I go onirrigating, pulling in my bulge withmy firm ‘Shapewear’ from a highstreet store and hoping that I cancontinue this way for a long time tocome. I know I may need surgery oneday but hope to put it off as long aspossible.

Tidings 25

Gloria Hadfield

Do you have a parastomal

hernia so close to your stoma

that support garments currently

available are ineffective?

It may be possible to provide

a solution. If you would be

interested in pursuing this

please e-mail

adrian.march@orange.fr

Hernia Prevention

Parastomal Hernias

Mary Jo Thompson, Stoma/Coloproctology Nurse Specialist, also gave a presentationon hernias at the CA National Meeting.She described a prevention programmethat she developed, together with hercolleague, Bernie Trainor, at the SouthernTrust, Northern Ireland.

The aim was to provide new ostomateswith information and advice about howthey could reduce their chance ofdeveloping a parastomal hernia. Theeffectiveness of the programme wasevaluated by comparing the percentage ofnew ostomates who developed a herniabefore the programme began with thepercentage who developed a hernia afterthe programme was introduced.

Prevention ProgrammeOn discharge, patients were advised toavoid all heavy lifting (defined as a fullkettle or heavy shopping) for three monthsfollowing surgery.

Three months after their stoma operation:1. Patients were advised of the potentialrisks of the development of a parastomalhernia.2. Abdominal exercises were taught anddemonstrated and patients were advised toundertake these exercises daily until oneyear after their surgery.3. Patients were measured and supportbelts or girdles were ordered. They wereinstructed and encouraged to wear thesewhilst lifting or undertaking heavy work.

Patients were monitored for one year aftertheir operation at regular intervals (threemonths, six months and one year) and theabove advice was reinforced at each clinicappointment.

In the year before the programme wasintroduced (August 2001 – July 2002) 28%of ostomates developed a hernia within ayear of having a stoma. When the programme was introduced,during the first year (August 2002 – July2003) the percentage of new ostomatesdeveloping a hernia fell to 14%

(a statistically significant reduction). During the second year (August 2003 – July2004) the percentage was 17% but onfurther examination, after compliance tothe programme was examined, this droppedto 10%.

These findings support the need forpatients to develop and maintain strongabdominal muscles to help prevent thedevelopment of a parastomal hernia andthey recommend doing this by exercise,avoiding heavy lifting in the first threemonths and thereafter supporting theirabdomen whilst heavy lifting.

A full account of this study has beenpublished in Gastrointestinal Nursing see:Thompson MJ, Trainor B (2005) Incidence ofparastomal hernia before and after aprevention programme. Vol 3 No 2: 23-27Thompson MJ, Trainor B (2007) Preventionof parastomal hernia: a comparison ofresults 3 years on. Vol 5 No 3: 22-28

Mary Jo ThompsonRGN, BSc, PGDip, MSc, ENB216

26 Tidings

Swimming after Stoma Surgery

Tidings 27Tidings 25

An ostomate at the National Meeting askedthe question: Which swimming stroke isleast likely to contribute to thedevelopment of a hernia? It was answeredby Adrian March, a CA trustee, who hasbeen an Amateur Swimming Associationand National Coaching Foundation tutorfor many years. Adrian suggested thatbreast stoke could impose undue stresseson the rectus abdominis muscle andtherefore crawl might be better, with hispreference being for back crawl. Adrianwas concerned that his reply was inevitablyover-simplified, and has written a fact-sheet on this topic of which an abridgedversion appears below.

Some Basic AnatomyAlmost everyone will have seen either askeleton or a picture of one, and will beaware that the major motor muscles of thearms are attached to the upper part of thetorso, and those of the legs are attached tothe pelvis. The only skeletal connectionbetween the two is the spine of which thelower part is, or should be, fairly flexible.When we stand up, we are prevented fromcollapsing in a heap by the posturalmuscles in the vicinity of the waistline: themuscles of the lower back, the obliques atthe sides, and the rectus abdominis at thefront. The rectus abdominis, popularlyknown as the “abs”, runs from the lowerpart of the rib cage to the pelvis andexcessive stresses on this muscle can, insome cases, lead to a hernia.

How Swimming Affects the BodyTo understand what is happening to thebody when swimming, it is necessary toconsider the forces which the water exertson the body. In the diagram of a frontcrawl swimmer we see the arms push downand back, so the resistance of the watergives rise to a reaction on the armsforwards and upwards (Ra). In the sameway the legs are alternately pushing down,so that there is an upward reaction (Rf). These two reactions, Ra and Rf, would havethe effect of folding the body upwards likea penknife, with a hinge at about waistlevel.This can only be prevented fromhappening by tension in the rectusabdominis, represented by the dotted linein the illustration.

Front CrawlIt is not generally appreciated that a frontcrawl swimmer in competition is pushingthe rectus abdominis to its limit.Accordingly, the initial advice on frontcrawl to a former competitive swimmerwould be “Swim at warm-down intensity”,to a recreational swimmer “Take it gently”,and to both, the universal recommendation“Stop if it hurts”.

Breast StrokeFor breast stroke, initial advice must be“Take it gently”. Many recreationalswimmers tend to draw the knees up underthe body, with the result that the water ishitting two large vertical obstacles, andgenerating substantial drag forces. Theseforces can be minimised by aiming to liftthe feet up towards the buttocks, ratherthan by bringing the knees under the body.Try also to keep the legs, with theexception of the feet, within the width ofthe body. It would probably be useful for aswimmer who is doubtful of his or herbreast stroke action to request some advicefrom an instructor at the local pool.Back Crawl

Back crawl has to be the initialrecommendation for swimmers afterabdominal surgery, because the reactionforces are resisted by the muscles of thelower back. The only caution, which appliesto all swimmers, is to be careful how youstand up. The usual technique of vigorouslytaking up a tucked postion, in order toenable the body to be rotated more easilyfrom the horizontal to the vertical position,is best avoided, and the advice should be“Stand up slowly”.

ButterflyThe basic advice for any colostomate aftersurgery who wishes to swim butterfly is“Don’t”. It wouldn’t be too much of anexaggeration to say that this stroke isswum with the rectus abdominis, and itcan’t be done gently.

Other Water Exercise ActivitiesApart from swimming strokes, enthusiastswill probably be interested in starts andturns. The fundamental principle must beto consider what use you are making of therectus abdominis. Starts should be noproblem, because the action is invariablyone of straightening out, but every turninvolves a tucked position, which has to betaken up briskly to enable a good leg driveoff the wall to be obtained. Anything morethan a gentle turn should wait until youare quite confident about yourrehabilitation.

Exercise in water can be excellent, but ifyou are looking for a class, not all aquaaerobics teachers are equal. The AquafitTeacher certificate has to be regarded asthe top qualification for water exercise.Explain your circumstances to the teacher,who should be able to advise you on anyexercises you should omit, or take gently.

Adrian March MA. PhD.

Swimming enthusiasts who would likemore detail can obtain a copy of thecomplete technical note,”Swimming afterStoma Surgery”, which includes adviceabout diving, by e-mailingadrian.march@orange.fr or contacting CA head office.“Scuba with a Stoma” is also availableon request.

Parastomal Hernias

Take Care!

SASH stoma support and

parastomal hernia belts are

suitable for Colostomy,

Ileostomy, Urostomy,

Umbilical and waistline

Insisional hernias. The SASH

stoma hernia belt has been

designed and developed by

an ostomist to give support

to a hernia that surrounds

the stoma without

restricting normal body

movement or limiting

muscle use.

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

Ten suggestions to reduce yourchance of developing a hernia. Theyhave been written with newostomates in mind, but even thosewho have had a stoma for some timemight find a few of them useful.

DO remember that your protection from ahernia depends mainly on the integrity ofyour principal abdominal muscle, the rectusabdominis (popularly known as the “abs”),which runs down your front from the lowerpart of the rib cage to the pelvis.

DO ask your surgeon whether there is anymedical or surgical reason why you shouldnot exercise to strengthen your rectusabdominis. If you are given the all-clear,undertake a proper exercise programme.Even if you were quite fit before surgery,work through the easier exercises first, andalways “Stop if it hurts!” Gentle smoothprogressive stretching will do you no harm,but don’t bounce into a stretch; this isknown as ballistic stretching, and should beavoided.

DO wear a support when undertaking heavywork if you have been advised to do so.

DO keep your body weight under control:being overweight is an invitation to ahernia. Work out your Body Mass Index(BMI), which equals (Weight in Kg) dividedby (Height in metres)

2. If your BMI is over

25, take steps to reduce it.

DO beware of any activity which causesyou to hold your breath. This increases thepressure in the abdomen and thereforeplaces increased demands on the abdominalmuscles. If it makes you grunt, then it’scausing an increased abdominal pressure,and indicates that caution is advisable. So ifin doubt, apply “The Grunt Rule!”

DO be careful about lifting: considerwhether what you are proposing to lift isreasonable, and think about the best way tolift it. Keep the weight as close to the bodyas possible, at all times, and make sure thatyou can keep your balance.

DO think carefully about moving furniture.If you can slide it, preferably with yourknee, that’s fine, but think twice before you

bend over and heave it. If you have aproblem reaching the top cupboards in thekitchen, invest in a KickStep, which you canpush around with your foot, and step up onto it comfortably.

DON’T kneel for too long when weedingthe garden - try to keep moving. If you findit difficult to stand up from a kneelingposition, consider using a kneeler, withsupport bars which you can hold to pushyourself up.

If your favourite exercise is running, DOmake sure that you run on a good surface.The consequences of a stumble, on a badsurface, could be serious.

If you enjoy riding, gentle hacking or basicdressage should pose no problems, but leavejumping until you can be more confidentabout your abdominal muscles. DO thinkcarefully about how you will mount thehorse - better to use a milk crate, or eventwo, to start with.

Adrian March MA. PhD.

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30 Tidings

So where do I start “My Operation”story? I think it is in 1995 when I hadcancer of the cervix (extending intomy womb) diagnosed. The treatmentrecommended was to have five weeksof radiotherapy, followed by a directapplication of radioactive material tothe site, technically known as Gammamed. An operation to remove mywomb would complete the process.

So a relatively intelligent personhaving had one brush with thedreaded cancer would not ignoresymptoms that should have rungsome alarm bells, would they? Oh,yes, they did: the massive weight loss,Loperamide for three months to treata dodgy stomach, and an inability tosit for more than an hour driving acar without rushing to the nearesttoilet. Well I had recently divorced,changed my job and was trying torebuild my social life. I hadn’t gottime to be ill had I? WRONG…

A tentative embarrassing conversationwith my local GP led to anappointment for a check up with thesurgeon who had diagnosed myoriginal complaint. He tried not to be

too negative, but gave me the newsthat I again had cancer. I had noillusions about the gravity of thesituation. I had two options. Firstly, Icould have an urgent operation toremove the tumour which was almostcompletely blocking my bowel, sothat it was in danger of bursting.Following this, I would be referred tooncology and pain managementteams who would ensure that I wouldbe helped in every way to have adignified death. Secondly, there was avery slim chance, in fact 5%, ofsurviving an operation which wouldbe performed a few weeks after thefirst operation. This was called a TotalPelvic Exenteration which wouldremove my bladder, my bowel and alot more besides.

So no choice there then. My onlystipulation was that I had everypossible test available to ensure thatthe cancer had not spread outside theareas already discussed, as I was notgoing to waste enormous amounts oftime and money if it had alreadyspread further. An MRI scan, CT scan,blood tests and other tests, long sinceforgotten, were followed by a further

appointment where I was given thegood news that the team haddiscussed the case and were willing totake me on. The recommendation andthe reality was that I should have theemergency operation without anydelay, followed by a nice sunnyholiday (which was an idyllic week inEilat) and then, when all the membersof the operating team could be co-ordinated, the operation would goahead.

Telling the children has to be one ofthe hardest things I have had to do. Icalled the three of them withrespective wives and girlfriends to ajoint family meeting. For once in mylife I could not waffle on, nor could Itell them anything but the wholetruth. To this day I don’t understandhow we all maintained stiff upper lips,but we did. The bare facts and thedecision reached were discussedmatter-of-factly over a cup of tea.Each of us reacted with rage, thedisbelief and the tears that inevitablymust follow, in private and in ourseparate ways.

The road to recovery...

Realpeople: Realstories

Tidings 31

And so it came to pass that on achilly day in February 2002 I wasadmitted to hospital to await myexenteration on February 13th (Ohdear). However, there was oneemergency too many and myoperation was delayed by one day:and so I have more than one reasonto buy myself flowers on Valentine’sDay.

My abiding memory of the pre-oppreparation was being told that I wasto have an epidural. In my innocenceI stated that I would really rather notbe awake during the operation, to betold laughingly that this was going tobe in addition to the normalanaesthetic. I am afraid I’m not surehow long the operation took. I onlyknow there were three surgeonsinvolved and I woke up in ICU hourslater. Shortly after I regainedconsciousness the Macmillan nurseassigned to me came in with the goodnews that the team had managed toremove all the tumour with a goodclean margin and all involved werehappy with the outcome so far. I wasnow the proud owner of a Urostomyand an Ileostomy. With the help of asmall amount of morphine I driftedthrough the next few weeks, graduallylearning how to change the bags andfinally put on some weight until I wasable to cope totally drug free.

The next big step was convalescence.I would stay with a friend down inKent and gradually get back tonormal. Having settled in I expectedto regain my strength but to mysurprise I became increasingly tired:sleeping in until mid-day, but stillfeeling exhausted. The crunch came inthe middle of one night when I hadwhat I thought was a haemorrhage.An ambulance was called and I wastaken to hospital. I underwent manymore tests and it was found thatinstead of healing internally, as hadbeen hoped, I had an ostrich eggsized cavity which had filled withfluid and I had developed septicaemia,I was anaemic and suffering from aB12 deficiency. I was moved intoisolation and put on a strongantibiotic regime, given a transfusionand injected with B12. Visitors had towear masks and be extra careful withhand washing on entering and leavingthe room.

The next couple of months passed ina haze. The B12 deficiency and theamount of trauma I experienced in arelatively short time left me with ashort term memory loss, which persiststo this day. Friends and relatives havetold me that on asking me at tea-timewhat pudding I had eaten atlunchtime, I would always say cherrypie and custard (must be myfavourite). I cope now by having alarge diary near the phone, so thatwhen friends call I can write inplanned outings or meetings straightaway.

I finally gotback home inDecember2002 andstarted thebusiness ofgetting betterin earnest. Idon’t knowwhere the past

five years have gone because theyseem to have flown by. In 2003 I gota very old dog from a rescue centre;he gave me a reason to get up in themorning and go for gradually longerwalks. Later that year I started drivingagain and gained a bit ofindependence. I started computerlessons and passed an IT exam. Finallyin 2005 I went back to work and Ienjoy earning some money, the goodcompany, and chatting to customersabout their DIY projects. I haverecently been on some interestingholidays to Dubai and China, as wellas trips to some of the historic andscenic parts of England.

I look forward to reaching sixty nextyear, but I won’t be retiring…like theman said…there are places to visit,people to meet and hobbies to enjoy!

Jean Ferridge

Jean Ferridge is the lady whoseletter was published in the last issueof Tidings. She wrote to ask if therewere any readers who hadundergone a pelvic exenteration asshe would like to correspond, orhave a chat, with others who havehad a similar operation. Six“exenterists” replied and we havepassed their details on to Jean. Hereis one of their letters...

Dear Editor

After reading the letter about pelvicexenteration in your autumn issue Ithought I would write about myexperience of that operation. In 2000 Iwas operated on for ovarian cancer andhad six months of chemotherapy. In2002 I needed more chemotherapy for atumour low down on my colon. Mycolostomy was formed in 2004 as thetumor was blocking my bowel.

Adapting to life with a colostomy was alot easier than I had thought, but thetumor was causing leakage from myanus. This was temporarily stopped byradiotherapy. My surgeon said hecouldn’t remove the tumour because itwas a potentially life-threateningoperation and would probably not beworthwhile because ovarian cancertends to keep coming back.

In 2006 I had increased anal leakageand life was pretty miserable, but thetumour had only grown a small amountand there was no new tumour. AnywayI was offered an exenteration-pelvicclearance. Three surgeons operated onme and removed the tumour, therectum, the bladder, and anything elseleft in there! I am now cancer-free forthe first time in seven years eventhough I have to manage two bags. Ithas taken six months to feel okay butnow I am able to live a relativelynormal life.

Yours sincerelyV. R. (Mrs)

32 Tidings

Marketplace

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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. Please contact Ray Goddard at Head Office on 0118 939 1537 for more details. Advertisements received before 22ndFebruary 2008 will be considered for inclusion in the next issue of Tidings.

Open Days..

Gill and Jeanette, the stoma carenurses from The Queen ElizabethHospital King’s Lynn, are organising aStoma Care Open Day.

Date: Sat 2nd February 2008.Time 10am and 4pm.Venue: Knights Hill Hotel,

South Wootton, Kings’s Lynn, Norfolk.

The colorectal nurse specialists atThe John Radcliff Hospital, Oxfordare holding a Stomatherapy PatientOpen Day.

Date: Sat 5th April 2008.Time: 10am – 2pm.Venue: Academic Street Foyer

Level 3John Radcliffe Hospital.

Walsall Hospital is holding a BowelAwareness Open day, a healthpromotion event designed to raisepublic awareness of bowel disease.

Date: Wed 16th April 2008 Time: 12 noon – 4pm.Venue: Upper Room

The Crossing at St Paul’s, Darwall StreetWalsall WS1 1DA

Stoma Care Open Days organised bynurses working within the NHS, whereseveral manufacturers and suppliersare represented, will be included onthis page free of charge.

Holiday Apartment within fellowColostomates home

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Have you any old toys in your housethat you no longer want?I am interested in diecast cars/trains/planes etc. Items will be sold at ToyFairs or on E-bay and a proportion ofthe proceeds will go to the Colostomy Association

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Tidings 33

Realpeople: Realstories

When my colostomy pouch needschanging I make sure everything is athand: towel, colostomy items, containerfor disposables etc. The process involvespartially undressing, removing the pouchfor disposal, cleaning around the stoma,drying off and applying the new pouch,and finally dressing again. I suppose thisis exactly what able-bodied colostomatesdo and even though one is in a seatedposition it usually takes only five minutes.This is one of the chief advantages inhaving a colostomy. People with nosensation below the waist have very littleidea of what is happening when seated ona toilet during normal bowel functioning,and manual evacuation over a long periodcan result in dreadful complications as Iknow to my cost.

However, spinally injured colostomateshave to be extra wary of skin damagebecause they may be unable to feel anydiscomfort around the stoma. Red areas,sore looking patches or skin lesions haveto be carefully attended to becauseneglect can result in open weepingwounds. Another problem that might arisefor a seated person with a large abdomenis how to obtain a view of the stoma area.This can sometimes be solved by deftlyworking with both hands and perhaps amirror, the only alternative being totransfer to a bed and deal with things in asemi-reclined position which is much lessconvenient.

In Britain there is an increasing awarenessabout access for disabled people, andnone is more important than accessibletoilets in public areas. But this is not thecase everywhere and a serious concern for

the “non ambulant” colostomate arises onlong haul air travel. Someone who canonly reach an aircraft toilet by beingpushed along the aisle in a transporterchair is faced with an immediate problembecause not all aircraft provide this itemof equipment. A second difficulty thenarises because the toilet area is usually notlarge enough for the door to be closed.Last year I narrowly escaped beingembarrassed when booking an expensiveholiday with a well known tour company.On discovering our return journey wouldinvolve a fifteen hour flight we inquiredhow I would reach the toilet and weretold my wife would have to carry me. Wecancelled immediately and were given afull refund.

A much more frequent problem forcolostomates who are unable to stand uparises when travelling by car. Transferringfrom a wheelchair to a car seat involvescrossing a gap, and various techniques areemployed all of which need good arm andshoulder strength. This sidewaysmovement invariably causes ones clothingto drag or twist and the part that takesthe strain is the waist belt which, as we allknow, lies across the colostomy pouch.Pulling and dragging on the pouch canhave disastrous results but I have not yetcome across a solution to this problemapart from wearing braces. Also I wouldbe glad of advice on how to check ifeverything is OK before it is too late whenseated in a car with other people present.

Spinally injured people will of coursereceive all the information they need fromtheir stoma care nurses but this will neverfill the gap in their confidence, a gap that

can only be filled by sharing theexperience with someone who is in thesame situation. I shall never forget thatyoung wheelchair athlete in StokeMandeville Hospital who paused at mybedside when I was recovering from mydisastrous accident – he put his hand onmy useless legs and said, ‘Don’t worrymate, you’ll soon be enjoying what I’mdoing.’ That was worth more thananything the doctors told me because Ibelieved him. We need realistic, similarrole models. Coping with a colostomy isquite similar to how we learned to handleour disability - with a quiet determinationto get it right. At first it may seem anoverwhelming burden but it will becomeeasier in due course. I well remember theold fashioned strict regime in the spinalinjuries rehabilitation hospital I firstattended over thirty years ago – ‘It’s yourdisability, so just learn to live with it’.

One reads of able bodied colostomatesinquiring about reversals suggesting thatthey would be happier if they were able toreturn to their original “normal” state. Theopposite is true in my case because havinga colostomy has made my life much easierand safer and as soon as I realised this Iarranged for it to be made permanent.When I pointed this out to my spinalinjuries consultant he wholeheartedlyagreed I had done the right thing. Heregretted that most of his wheelchairpatients would not consider having acolostomy because it would push themeven further away from what theyconsidered to be normal. How true is thesaying “you can lead a horse to water…”?

Ken Roberts

Coping with a colostomy…and spinal injury

I am a paraplegic with full upper body movement butcompletely paralysed below the waist and with nofeeling below that level. I rise each morning by slidingfrom bed to wheelchair, or perhaps a shower chair,and the rest of the day is spent doing things on fourwheels. Please note we don’t say ‘wheelchair bound’as this term is a contradiction of facts - without ourwheels we would be confined to a bed or an armchair,so our wheelchairs give us the freedom to moveabout and live as normally as possible.

Cumbria: Sue Hanhan

Gloucestershire: Yvonne Penfold

London: Julian Sayers

West Midlands: Mike Tomkins

Oxfordshire: Janet Bradley, Ken Hill

South Yorkshire:Karen Kilford

South Wales: David Ford

New Literature...

and a warm welcome to our New Volunteers

• Living with a ColostomyA 32 page booklet for new colostomates

• Caring for ColostomatesAn aide-memoire for nursing home staff and otherswho look after people with a colostomy

• Travel Advice

• Healthy Eating

• An Introduction to Irrigation

The Colostomy Association welcomes new volunteers in the following areas:

Our new volunteers will be manning the CA stand at local open daysand will also be happy to visit new ostomates in their area.

36 Tidings

Doreen Littlewood records

her experiences over the

last few years - first an

ileostomy, then a colo-anal

pouch and finally a colostomy.

She says, ‘A bonus for me in

writing this diary was that

I have found it a cathartic

experience and it has helped

me to realise just how far

I have come.’

September 2004I was diagnosed with colo-rectal cancerand was admitted to hospital for ananterior re-section of the colon whichnecessitated a temporary ileostomy. Re-section of the colon was lower thananticipated which left me with virtually norectum. Therefore, an internal colo-analpouch was created to compensate.Thankfully, the cancer was removed andno further treatment was necessary, butmy recovery was not straightforward. Itwasn’t until February 2005 that I felt wellenough to have the reversal of theileostomy my consultant had previouslyplanned.

February 2005 The ileostomy was reversed and that iswhen my problems really started! I wastold that my bowel movements would befrequent and unpredictable, but thiswould settle down to possibly betweenfour and eight times per day. This I couldhave accepted as the price to pay forhaving the cancerous growth removed.However, I was totally unprepared forwhat happened after every time I ate: upto sixteen bowel movements over a periodof up to three hours, regardless of what Idid or didn’t eat, how much or how littleand when. Neither was I prepared for theextreme inflammation, pain anddiscomfort in the anal area, nor theincontinence. I kept a comprehensive diaryof what and when I ate and of bowelmovements to see if it was certain foodscausing the problems. No pattern seemedto emerge. Various medications were triedincluding Loperamide and Mebeverine, but

they caused even more discomfort andpain.

I was given various contradictory advice: Iwas told that it could take up to sixmonths to settle down to an acceptablelevel, then I was told that it could betwelve months and then I was told thatmaybe it never would. It was suggestedthat due to the surgery my anal sphinctermuscle function was poor, but that anyintervention was unlikely to improve it. Imyself felt that the internal colo-analpouch was not functioning as it shouldand did not have the extra capacityrequired.

During the twelve months I had the colo-anal pouch, apart from the misery andphysical discomfort and incontinenceproblems I was experiencing, my social lifeand quality of life took a nose dive. I wasunable to go out with my husband for ameal or enjoy a meal at other people’shouses because of the consequences. Peterand I had always loved hill walking andalso bike rides and would pack up a picniclunch or have a pub lunch en route. Thiswas no longer possible unless I had a veryearly light breakfast and waited two orthree hours before going out. I then hadto walk all day without taking anyrefreshment until I got home in theevening and then paid the price. Hotelholidays were out of the question.

Every time I saw my consultant I keptgetting contradictory information. I felt hethought I was exaggerating. At one pointhe told me that he thought a permanent

Realpeople: Realstories

Moving on…Doreen on her ascent of Dobratsch near theAustrian/Slovenian Border during theholiday she could not have contemplatedeighteen months ago. Doreen says, ‘I felt Ihad climbed a mountain in more ways thanone!’

colostomy would perhaps be the way backto quality of life. He could do one thatsummer, but I would need to go away andthink very carefully about it. I did myresearch and spoke to people who hadundergone and lived with a colostomy.However, when I saw him a few weekslater he told me he ‘wouldn’t want to doone at this stage!’

March 2006After twelve months of sheer misery,physical discomfort and incontinence, Iasked to be referred to another colo-rectalsurgeon who said that if there had beenno significant improvement after thislength of time it was unlikely there wouldbe much further improvement. Wediscussed the possibility of a colostomyand he emphasised the problems I mightpossibly experience but said that he wouldlike to do his own assessment beforegoing ahead. This included a gastroscopy,a flexible sigmoidoscopy and a barium X-ray, the result of which showed that I hada much faster throughput from the smallbowel to the large bowel than normal. Isaid that this had never been the casebefore surgery so why now? He said thatit had probably been like it all my life butmy system had been able to cope with ituntil I had surgery.

July 2006The decision was made to go ahead witha colostomy and in July 2006 I hadsurgery. In less than a week I was eatingand able to enjoy meals without theconsequences. My family and friends wereamazed at how quickly I recovered. Mystoma nurse was excellent and verysupportive as was my husband, Peter, whohas been a tower of strength since mydiagnosis and throughout my ordeal.

September 2006My recovery was such that six weeks laterPeter and I were able to holiday in ourcaravan and walk the Yorkshire Dales, and,yes, I was able to eat a packed lunch aswell as meals out without consequences. Iwas coping with all the practicalities ofmanaging a colostomy and none of thepotential problems I had been warnedabout (e.g. phantom pain) materialised.

November 2006 November saw us on holiday in the LakeDistrict and I climbed Skiddaw andBlencathra, did an eleven and a half milecircular walk and even went swimminghaving been provided with the appropriatestoma appliance and a stoma friendlyswimsuit (stylish, not frumpy!).

January 2007Another holiday: this time in Cornwallwalking the coastal footpath. Startedswimming at 8.00am, three times perweek!

March 2007Then the big challenge – taking a holidayabroad! How would I cope with the flightand cabin pressure affecting my pouch,taking my supplies with me, disposalproblems at hotels, medical insurancecover etc? I spoke to a very friendly ladycalled Jackie at the Colostomy Associationwho gave me lots of helpful advice andtips, together with a list of medicalinsurance companies willing to cover mycondition and a travel certificateexplaining the medical supplies in myhand luggage for airport security. Wespent ten days in Austria – no, not skiing,but we did take our walking boots andhad a fantastic climb up Dobratsch(2,166m high near the Austrian/Slovenianborder – a mountain I felt I had climbedin more ways than one!). We also enjoyedmany other activities and all my anxietieswere unfounded.

April 2007 Reached thirty lengths per sessionswimming three times per week. Also didmy first bike ride since surgery.

FinallyOut of choice I wouldn’t choose to livewith a colostomy and it is not without itsminor problems and discomforts, whichcan become major if I allow them to.However, it is nothing compared to theprevious daily physical discomfort, painand resulting stress. I have re-gainedquality of life, have been able to resumemy social life and can now do all theactivities which Peter and I so loved doingtogether prior to the initial surgery. I havea greater awareness of being and feeling“alive” even if I am approaching sixty-twoyears old. There is plenty more life in meyet!

Doreen Littlewood

Ken’s Poem

Nine years ago to be precise,

A surgeon put me in a coma.

Lo and behold when I came round,

I found I had a stoma.

So I don’t sit on the toilet now,

It all goes in a bag.

An excellent arrangement,

But now and again there’s a snag.

Sometimes it tends to pancake,

And sometimes it balloons,

And though you may not think so,

It can also play little tunes!

Another little problem,

About which I prefer not to speak,

Is that suddenly without warning,

The darn thing can develop a leak.

The credit side to all of this,

Is that I still have a life.

For this I must be grateful,

To my ever loving wife.

This is something I must say

And think everyone should know,

She sent me to the doctors,

When I didn’t want to go.

I should have seen the warning signs

Eight stone instead of eleven,

It’s obvious now on looking back,

I was on my way to heaven.

(Or that other place!)

I’ve made a good recovery

That’s the name of the game,

So to anyone who is in the same boat,

Take heart you can do the same.

So raise a glass and drink a toast,

To the years which lie ahead,

For one thing is certain in this life,

You’re a long time dead.

Kenneth Williams

Kenneth says, ‘I was seventy-five when I

had my colostomy operation. I am now

almost eighty-four and still going!’

Tidings 37

38 Tidings

Q: I am troubled by odour. I changemy pouch every evening before bed anduse a lubricant/deodorant inside the newpouch. By mid-morning the odourdevelops. I have tried bags with andwithout filters. I have tried the clamp-typeand closed-end bags. There is no evidentleakage from the pouch or skin barrier. Iwould appreciate any salient advice.Thank you.

A: Odours may originate from either yourdiet or medication. Certain foods forinstance onions, spicy foods or greenvegetables may cause an odour withcertain individuals. However, not everyoneis the same and therefore it may bebeneficial to keep a food diary for a shortwhile, noting what foods you eat and whenyou feel there is an odour. Also it may beworth speaking to your GP to discuss if anyregular medication you take is the sourceof the problem. He may then be able togive you an alternative to try.

There does not appear to be any physicalcause for the odours as you state there isno leakage from the pouch or skin barrier.However, you do not state if the odours arenoticed by anyone else. You could ask yourclose family if they have noticed anything.It may be that you are more sensitive tothe possibility of odours and are thereforemore likely to notice them. If this is thecase you may find the use of perfume or

aftershave placed on the cover of thepouch will disguise the odour and makeyou feel more comfortable.

Q: A close friend of mine has justundergone a stoma reversal operation afterhaving a colostomy for almost a year. He isseventy-four and unsure of what to expectafter the operation. I can't find muchuseful information on the net. He has beengiven no after-care advice from thehospital and needs to know about diet andany problems he may experience regardingbowel movements and pain in these firstfew weeks. How long it will be before he isback to normal, if ever?

A: Most patients having reversal of acolostomy recover very well from surgeryand return to their usual lifestyle in arelatively short period of time. It is difficultto say how long it will take for thegentleman to recover from surgery as youdo not say whether the reversal involvedopening the previous abdominal scar. If heunderwent a laparotomy (opening of theprevious wound) to enable reversal of thestoma it will be approximately six weeksbefore he can drive and eight to twelveweeks before he is able to do any liftingsuch as carrying heavy shopping orstrenuous work like gardening or cleaningwindows. If however it was done via thestoma wound only, then he will recover alot faster.

He may find his bowel movements are alittle erratic to start with and the outputmay be looser than previously. However,depending on how much bowel wasremoved during the original operation, hisbowel action should return to a regularpattern. With regard to diet he should beable to eat normally, although it may beworth building up to a normal diet slowly.

I hope this is useful but if your friendrequires any more in-depth detail specificto his surgery it would be beneficial tocontact his stoma care nurse.

Q: I was just wondering if you couldhelp. My dad has to have an operation todilate his stoma as it has retracted. Couldyou tell me more about this operation?Why do things like a retracted stoma andstoma closing happen?

A: A stoma usually closes or restricts dueto an initial problem with healingimmediately after surgery. Quite often thiswill heal without any further problems buton occasions the new tissue will continueto form causing the stoma to tighten. Ifthis happens then it is possible in the shortterm to dilate the stoma using a specialdilator. An ostomate can be taught how todo this or if it is very tight it can be carriedout under a light anaesthetic.

However, eventually surgery may berequired to refashion the stoma. This mayinvolve a laparotomy (opening up the oldscar in the tummy) or may be done as alocal procedure where the stoma is releasedfrom the skin edge and a new piece ofbowel pulled to the surface. Alternatively, ifthe stoma is only temporary then thestoma will be reversed as soon as is possiblewith dilation keeping the stoma open inthe short term.

Without more detailed informationregarding your dad’s previous surgery I amunable to answer the specifics and it maybe worth speaking to the local stoma carenurse, who will have access to the medicalnotes, or to the surgeon doing theprocedure.

Q: I am writing this letter on behalfof my wife. She had a colostomy done inApril after an emergency operation back in2001. Because it was an emergency theresult is she suffers constant pain in theback passage which the hospital has triedto cure with injections on many occasions,but with no results. I would like to know ifany other ostomates have the sameproblems. My wife gets too distressed towrite herself hence I am doing it for her.

Dear Nurse...

Julie Rust RGN. Dip, N. MSc.Clinical Nurse Specialist Stoma Care University Hospital of North Staffordshire

Tidings 39

Dear Nurse...

A: Occasionally ostomates do have thisproblem which once investigated is not dueto any physical cause but often the resultof a nerve problem. These can be difficultto treat or manage and often requirereferral to a chronic pain consultant. Ifyour wife has been investigated and doesnot have any obvious cause for thisdistressing problem it may be worth askingfor her to be referred to your local painconsultant to see if they can provide anyrelief for her.

Q: My father has a problem withdetachment of his stoma bag. He has alarge hernia which is causing problemskeeping the bags in place. His surgeon isreluctant to repair the hernia and/orreverse the ileostomy so it looks like hehas to put up with the bag problem. Iwondered if you could give any advice.

A: The use of an abdominal support isoften recommended if a hernia is unable tobe repaired surgically and therefore it maybe worth asking for a review by the stomacare team. They may be able to eithermeasure your father for an abdominalsupport themselves or refer him to one ofthe many companies who offer this service.As for the problem with the adhesion ofthe pouch due to the shape of the herniathere are now special pouches made forthis purpose and again the stoma carenurses should be able to advise.

Q: I had my colostomy in February2006. I use a two-piece pouch because Ifound the one-piece impossible as I kepthaving leaks. I have adjusted to mycolostomy very well, I think, but I havealways suffered from pancaking, despitenumerous efforts to combat the problem.So I have learned to cope with it.

My problem is that I have suddenly startedsuffering a lot of soreness and discomfortaround my base-plate – not on the insidenear the stoma but at the outer edge. I doget some problems with soreness around

my stoma but I use a barrier cream forthat. However, I cannot use this as mybase-plate will not stick. This reaction hasonly just started but I have not been usinganything different on my skin.I do get allergic reactions to metal andoccasionally have had a bit of a flare upfrom the tape hospitals use to keep dripsin place.

Is there anything I can use to protect myskin that won’t stop the base-plate fromsticking? I would be very grateful for anyhelp you or other colostomates could give.

A: There are many reasons for sorenessaround the site of the stoma, allergy to theadhesive being one of them. A review byyour stoma care nurse would identify if theproblems you are describing is a trueallergy, in which case a change of productwould be beneficial. The stoma care nursewould be able to advise you on whichproducts would be suitable, bearing inmind you prefer a two piece appliance. Ifthe soreness is not due to an allergy thereare many products on the market whichcould help relieve this problem and againyour stoma care nurse can advise. Barriercreams made specifically for use withstoma pouches are available and if usedsparingly, rubbed well in and any excesswiped off with a dry tissue may help thesoreness without causing a problem withadhesion of the pouch.

Please send your medicalquestions or any queries about stoma management to

Colostomy Association, 15, Station Road, Reading RG1 1LG

or e-mailcass@colostomyassociation.org.uk

We will forward them to JulieRust and publish her answers in the next issue of Tidings.

Dear Nurse...

40 Tidings

� Dear Editor

I had my operation for a blockage in thebowel in July 2003 and received promptmedical attention here in North Wales. Iwas admitted to hospital by ambulanceand told that I would need an emergencyoperation – a life or death situation. I hadno time to make any decision.

I had the operation on the followingmorning and that evening my husbandvisited me and neither he nor I knew thatI had a colostomy. It was a great shock tolearn three days later that I had a bag.Unfortunately circumstances hadwarranted this - I was told later at homethat I had a Dukes ‘B’ cancer.

I was very fortunate that everything wentwell and I did not need chemotherapy.I am seventy-three years old now andhave a hernia, a permanent colostomy,osteoporosis, osteoarthritis and have had akidney removed.

I thank God for each day and I feel verygrateful for the help of my husband andfamily. I also appreciate the help thedoctors and nurses gave me in hospitaland the care I have been given since. Mymotto is “Never give up”.

Many thanks for all the useful informationin your magazine which I read avidly and Iknow that many people are much worseoff.

Yours sincerelyJ. W. (Mrs)

� Dear Editor

There's no substitute for a goodeuphemism, is there? Phantom rectal painis well known, and much has been saidabout it, but I would like to bring to yournotice an entirely different effect, whicharises as a consequence of the use of pre-operative high dose radiotherapy in casesof anal and ano-rectal cancer. This isbecoming less common, now that efficientscanning techniques are available todetermine the margins of the cancer, sothat it can reliably be completely removedby surgery. Nine years ago, when I had mysurgery, radiotherapy was the standardprocedure. After no more than a couple oftreatments I felt fine: what had been avery uncomfortable condition no longercaused any discomfort, and I felt that Iwas already being cured. The effects onlycame to light later: a full six months forthe perineal wound to heal (almost worsethan the disease!) and almost completeerectile dysfunction.

It was not until about five years hadpassed that I began to feel that there wassomething wrong: in the perineal regionthere seemed to be more of me than thereshould be - had the cancer returned? Imade an appointment to see myconsultant, who after a very thoroughexamination assured me that everythingwas exactly as it ought to be, and I couldbe completely confident that there wasnothing wrong. We discussed why I hadbeen so convinced that there was aproblem, and we came to the conclusionthat the nerves which had been damagedby the radiotherapy were slowly growingback again. The "problem" had been that Icould feel my bottom for the first time in

five years! I still get the occasional feelingof something "different", but then I realisethat this is how I ought to feel, and itseems quite normal again.

Perhaps, if someone else experiences asimilar feeling, they can be assured that itdoes not necessarily mean that somethingis wrong, although it would be as well toget it checked.

Best regards,Adrian March (CA Trustee)

� Dear Editor

I had rectal cancer and was given acolostomy and mucus fistula operation inMarch 1998 – just three months beforemy retirement. During June and July I hadextensive chemotherapy and radiotherapy.My follow-up check in November wasquite a shock. My consultants exact wordswere: ‘I’ve got some good news and somebad news. The good news is that thetumour has gone. The bad news is wehave found a cancerous polyp in the backpassage and you will have to have anoperation to re-site the colostomy andremove your sigmoid colon, rectum andanus.

The dreaded day was arranged forDecember 31st 1998. After a five houroperation I went back on the ward. Thenext morning I was taken back into theoperating theatre to have the packing inmy behind changed. ‘Happy New Year,’ thesurgeon said!

District nurses changed the packing everyday for nine months until the woundclosed up. It took longer as I had MRSA.After some early trouble with my stoma itsettled down and I was able to live a fairlynormal life, being able to have holidays inMemphis and Belguim.

Then in February 2005 I had a heartattack and had a stent fitted. Although Iam not able to exert myself I can stilldrive so we get out as much as possible.

Yours sincerelyC.O. (Mr)

� Dear Editor

So many of the letters and articles inTidings echo parts of my story. I was afirst child, born in 1927. I think myproblems stem from my mother’s desire todo the best for me – as understood at

Readers’ Writes

Editing TeamRosemary Brierley

Jo McKenzie, Gill Herbertand Beryl Goddard

that time. ‘You were constipated from theday you were born,’ she would say.“Regularity” was all and I was neverregular. I was made to sit every day until I“performed” – often left for hours. I canstill remember the agony of enemas –long black rubber tubes. I always sufferedfrom constipation and feel it was due tothis misguided regime. I took care never toask any of my three children about theirbowels and I don’t think they ever hadproblems.

In my sixties I became faecally incontinentand after many investigations I had acolon resection. I try not to remember thenightmare months when, as a result ofthis, I spent hours on the loo and sufferedsevere stomach cramps. The only thingwhich gave me any relief at this time wasa neat whisky. As I was at the time heavilyinvolved in committee work trying to helppeople control excess alcohol use andabuse, this gave me some embarrassment.‘I only take sips,’ I assured mydoctor/surgeon/director. ‘Ho, Ho, enjoy it,’they replied.

Eventually I gained some control viadrugs, but for some time I had to resort tomanual extraction with the aid of KY gel.In 2005 I experienced considerable painand thought I had another prolapsedbowel. The consultant told me mysphincter had gone and I should have acolostomy. That night my supremely fit,active and caring husband, of fifty-threeyears, was taken ill. All my problems wereon hold while he underwent chemotherapyand at Christmas 2005 he had surgeryfrom which he did not recover.

Six weeks later I had a colostomy. Whennothing appeared in the bag, furtherinvestigations discovered adhesions froman earlier operation and more surgery wasneeded. I spent four weeks in hospital. Igradually learnt to cope but began tohave leaks. The stoma prolapsed and so Ihad another spell in hospital in October2006.

At last I think we have found the rightbag - a convex flange copes with the verydeep “gully” on one side and I find adrainable bag much easier to deal with.For about three weeks now I have had noproblem. Early morning I have a goodshower and change the bag and then restof the day I use public or private toiletsjust like (or about just like) anyone else.

I am now almost eighty and living on myown for the first time in my life. I find Ihave to take everything very slowly, but Ihope now I can start to live again.

With all best wishesP.M.N. (Mrs)

� Dear Editor

I have had a colostomy and urostomy forsixteen years. I look after them myselfeven though I am not able to see well andmy hands jerk as I have neurofibromatosis.To change the whole lot takes nearly threequarters of an hour. My district nurseshave offered to help but I want to keepwhat little independence I have left. I’mrather disabled: my balance, hearing,speech and sight have all been affected.

The stomas were a must, or I wouldn’t bein the land of the living. I’ve got nospecial names for them. Only when theyleak, then I call them a lot of funnynames! I have a fantastic stoma care sister.She is now retiring but she was always onhand when I first had my stomas and Iwould have been lost without her,

Thank youB.T. (Mrs)

� Dear Editor

I had my operation for a bowel abscess,apparently at the point of bursting, justover a year ago and ended up with acolostomy. I have suffered fromrheumatoid arthritis for over thirty yearsand on waking from the operation I hadnot only to deal with the bag but alsowith the fact that I couldn’t lift myself upfrom the pillow. I lay in bed virtuallyhelpless for more than two weeks.

I had no incentive to help myself and mydaughter started talking about putting meinto a care home. This really shocked meout of my lethargy. Also my adorable sixyear old granddaughter would come up tomy bed, hold my hand, stroke myforehead and occasionally lie next to me.She made me feel I had something to livefor. So I managed to sit up, get out ofbed and begin to walk again. After twomonths in hospital I was discharged and,with the help of my fantastic carers,started to live again.

I still suffer from an unpleasant vaginaldischarge and also, as a result of what wasapparently a massive operation, mydrainage holes on the operation scarcontinue to leak. However, I am copingwith these problems.

Yours very sincerelyJ. M. (Mrs)

� Dear Editor

I noticed that in the last issue of Tidingssome people said they are wary oftravelling by plane. I am eighty-four yearsold and for the last two and a half yearshave travelled by myself to see my familyin Phoenix, Arizona, USA - a four hourjourney to Heathrow by bus, and a tenhour flight. I have found the BritishAirways personnel most helpful at bothairports and had no difficulty in dealingwith my stoma – now over four years old.

I get insurance but there is a clauseexcluding my stoma - thank goodness Ihave had no difficulty. I travel twice a yearin April and October. It’s lovely to be withmy family for three weeks and to see myfirst great grandson who was born inAugust last year. I trust I’ll be able to goagain in April this year.

Yours sincerelyE. J. (Mrs)

From Ed...

Dear All...

Thank you for your lettersand e-mails. Please keepthem coming and we willdo our best to print them.Editing may be requiredfor reasons of clarity orspace. In the interests ofconfidentiality we willpublish only your initials,not your full name, unlessyou give us permission todo so. Ed.

Tidings 41

Support Group in the Spotlight

The North Notts Stoma Support Group

The group has been in existence forapproximately five years. We meetevery second Saturday in the monthfrom 10a.m. to 12noon at The NewBoardroom, Kingsmill Hospital,Sutton-in-Ashfield.

Our aim is to encourage patients toovercome the trauma of theiroperations and to show what theyare able to achieve in their livessuch as travelling and eating out.We have arranged coach trips andhold swimming sessions twice ayear.

In the past we have had guestspeakers on topics such asaromatherapy and the Lincs/NottsAir ambulance service. TheNottinghamshire District Coroneralso gave a very interesting talk.We hold very informal meetingswhere we discuss problems we haveencountered and how to deal withthem. Unfortunately for some timewe haven’t had the luxury of aqualified stoma nurse to give moremedical advice. However, at a recentvisit to Salts of Birmingham theproblem of a lack of stoma nursingadvice at our meetings was raisedduring a general discussion about

support group activities. We havesince learnt that Kate Howlett, aqualified stoma nurse, will beattending our monthly meetings.

Although the group is small it ishoped that with the help of thelocal stoma care nurses at KingsMill Hospital, who will inform allnew and existing patients about ourgroup, we will thrive.

For more informationplease contact:Tore Norman 01773 715460

Some members of thegroup and their familieswho enjoyed a session atSutton-in Ashfieldswimming baths inOctober 2007

The Glasgow Self-help Stoma SupportGroup,“Fittleworth Friends”, meets atthe Fittleworth Care Centre, Unit 1Riverside Business Park, MoffatStreet,Glasgow G5 0PD on the firstTuesday of every month at 10am.Dates of next meetings: 5th February 20084th March 2008(There will be no meeting in January incase of poor weather conditions andtravelling difficulties)For further details contact Maureen0800 783 7148

Optomists, the Cornwall OstomySupport Group, meets at theHeadquarters of the Cornwall Women’sInstitute, Three Milestone, TruroBusiness Park, TR4 9NH, usually on thefirst Monday of the month from 2pmtill 4pm Dates of next meetings: 4th February 2008.3rd March 20087th April 2008.For further details contact Sue Hatton01326 340058

Devon IA (supporting Devon andSouth Somerset) welcome anyone witha stoma to their meetings:Umberleigh Village Hall, North Devon.Thursday 6th March 2008 at 12 noon.

West Hill Village Hall, West Hill, Ottery St Mary.Saturday 12th April 2008 at 12 noon.

Display of stoma care products.Refreshments.For more information contact:Margaret Bond (Secretary) 01392447374 Bomarg10@aol.com

Essex Stoma Patients Support Groupmeets at St Catherines Church Hall,Southend Road, Wickford on the lastTuesday of the month from 7pm to9pm.Date of next meeting:29th January 2008.For further details contact MargaretCopsey 01268 271123

If you contact us before 22ndFebruary 2008 we will publish thedate and venue of your next StomaSupport Group meeting.

New Support Group in SouthamptonCarole Summer, a colostomate wholives in Southampton, is setting up alocal support group for people withstomas. She would like to hear frompeople who would be interested inattending monthly meetings. If you live in the SO postcode area andwould like to meet up with otherostomates contact Carole: Tel No 02380 446 779 E-mail carole.lesley@btinternet.com

Is there no support group in yourarea? Are YOU interested in settingone up?If so let us know at head office and we will provide help and advice. We can also put you in touch withother ostomates who have set up theirown local groups.

News of local stoma support groups...

Dedicated to Colostomates and their Carers

Put your group in the Spotlight...Write and tell us about it and we will do our best to include your article andany photographs.

42 Tidings

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comes in 2 pieces”(FREESTYLE® 2 PIECE USER)

®

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the comfort and security you need

to enjoy a sense of real freedom.

FreeStyle 2 Piece features a new

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– first, a pouch ring fi ts snugly

onto the base plate, then an

adhesive on the pouch ring

reinforces the seal.

In addition, FreeStyle 2 Piece

has a flexible, low profi le ring

to deliver the highest levels of

comfort - giving you the freedom

to enjoy life to the full.

To find out more, call the

CliniMed Carelineon 0800 036 0100or visit our website

www.clinimed.co.uk

Manufactured by a CliniMed® Group companyFor a free sample of FreeStyle 2 Piece please complete the coupon and return it to: CliniMed Ltd., FREEPOST HY241, High Wycombe,

Bucks. HP10 9BR (NO STAMP REQUIRED).

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

Postcode: Tel. No:

E-mail: Details of the current pouch you use: � One piece � Two piece

Name: Code: My exact stoma size is mm

Please send me: � Drainable � Closed

� Midi � Maxi � Maxi Plus

� I understand that this request will be handled by ClinMed Ltd. or SecuriCare (Medical) Ltd. I would like my details to be kept

on file, so that I can be kept up to date with information about relevant new products and services.

Welland products are distributed in the UK by CliniMed Ltd., Cavell House, Knaves Beech Way, Loudwater, High Wycombe, Bucks. HP10 9QY. CliniMed® and FreeStyle® are

trademarks of CliniMed (Holdings) Ltd. ©2007 CliniMed Ltd. 923/1107

0820 SCare 2PCE A4 AD.indd 1 10/12/07 16:17:36

Norman Selwyn was 80 yearsyoung in August and insteadof presents requested thatfriends made a donation to

the Colostomy Association.A fantastic £345 wasraised. We heard that

Norman also receivedenough bottles ofhis favourite malt

whisky to open a shop!

The veterans section ofthe Lords Golf &Country Club inRayleigh, Essex held a charity golf day to support theassociation. Thisevent raised£583.50.

Nikki Cameron ofGlasgow held a “Dressdown Friday” at work andsent us a cheque for £45.50.

Sister Angela Jeff and SisterDeborah Singleton of theColo-rectal and Stoma CareDepartment at MacclesfieldGeneral Hospital raised£124.32 at an open day heldin August.

Please keep fundraising for usas we rely totally ondonations to keep up ourwork of giving support tocolostomates. Every pennydoes count!

RecyclingDid you receive anew mobile phonethis Christmas? Please remember usif you have an old one torecycle.Just give us a call and we willsend you a freepost envelope.

Tell us more about

your fundraising

events...for CA

Fundraising...success

A typical clause is set out below.

1

1.1 I give [words] pounds(£[figures]) to the ColostomyAssociation Limited of Mill CottagePolwheveral Constantine FalmouthCornwall TR11 5RW (registered charitynumber 1113471) (the ‘Charity’) and Irequest the Charity but withoutimposing any binding trust or legalobligation to use the legacy for itsgeneral charitable purposes.

1.2 If at the date of my death theCharity is no longer in existence or issubject to a winding up order, [myExecutors shall pay the legacy to suchother charitable body or bodies havingthe same or similar objects as myExecutors shall select] [the legacy shalllapse].

1.3 The receipt of the treasurer orother appropriate officer for the timebeing of the Charity [or of anysubstituted charity to which the legacyis paid under sub clause [1.2]] shall bea good discharge to my Executors].

Legacy to Colostomy Association

44 Tidings

If you are about to make a will, or are considering making a change to your current will, spare athought for the Colostomy Association and consider making a legacy to help us continue to supportcolostomates throughout the UK.

This would involve adding a clause to your will or, if you already have one, the addition of a codicil.You will need to consult your solicitor in both cases to ensure that you do not invalidate your will.

Legacies...another way to continue to support our work

Tidings 45

The Colostomy Association is an independent charity, financed solely on donations. This means that we must seek ongoing support to ensure our important work can continue. We would like to invite anyone with a colostomy, (permanent or temporary) and/or members of their family to become ‘Friends of the Association’

With your help we really can make a difference...our findings show there are approximately 60,000colostomates living in the UK and with over 6,400 permanent colostomy operations beingperformed each year - we need to be here for them!

Other ways we help...The Association continues to help colostomates who are experienced andthose who are new to living with a colostomy. We produce a regular quarterly magazine called‘Tidings’. We have over seventy volunteers who are all colostomates willing to make personal visitsto offer support. We provide informative literature, attend hospital open days, and offer a twenty-four hour helpline. Our web site is being developed to reflect all of the above and more!Importantly, we are involved in ongoing consultations with the National Health Service on yourbehalf and will keep you informed of issues that may affect you.

Donations...Single donations from individuals and fundraising events are always welcome andgreatly appreciated. Your financial support has never been more important. With a continuingincome and planned agenda, we can budget for, and carry out, the excellent work of theColostomy Association.

Becoming a ‘Friend’...A ‘Friend’ is asked to make a regular commitment of £12.00 (or more) tothe Association each year, either by standing order, cheque or postal order. This will ensure thatwe are able to continue to produce four issues of Tidings per year - full of the latest news,product information, hints and tips and real-life stories from other colostomates.

This regular payment will ensure that there is always a helping hand for those who need it, nowand in the future – including some colostomates yet to be born. There are many thousands ofadults and children, who, now and in the years to come, will receive a life saving colostomy.

Please help us to reach out to them with support and encouragement

I want to become a ‘Friend’:

I enclose a cheque/postal order for £12.00 (made payable to Colostomy Association)

I have completed the Standing order form on Page 46(please complete the standing order form overleaf)

Please tick here if gift aid applies to your donation (see overleaf for details)

Note: Please ensure that we have your full name, address and postal code

Office Address: 15 Station Road Reading RG1 1LG Tel: 0118 939 1537 Helpline: 0800 328 4257E-mail: cass@colostomyassociation.org.uk Web: www.colostomyassociation.org.ukRegistered Office: Mill Cottage Polwheveral Constantine Falmouth Cornwall TR11 5RW Registered Charity No: 1113471

Support us...please become a Friend of the Colostomy Association

Donations & Standing Order Authority

Please return this form to: Colostomy Association, 15 Station Road, Reading RG1 1LG

Title: First Name: Surname:

Address:

Postcode:

Tel: Email:

To the Manager (Bank or Building Society)

Address:

Postcode:

Name(s) of Account Holder(s)

Account No: Sort Code:

NatWest Market Place Reading Branch

13 Market Place Reading RG1 2EP

Account Name: Colostomy Association 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 week/month/quarter/year (delete accordingly) until further

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

Name: (IN CAPITALS)

Signature: Date:

I would like the tax to be reclaimed on any eligible donations that I have evermade or will make to the Colostomy Association until further notice.

I confirm that I pay an amount of income tax and/or capital gains tax at least equal to the tax that theColostomy Association reclaims on my donation in the appropriate year (currently 28p for every £1 donated).

Signed: Date:

Please help the Colostomy Association to support other colostomates by making a donation - thank you

Instruction to your Bank/Building Society to pay by Standing Order

Please pay:

46 Tidings

Some sad news...During the last few months of 2007 we received the sad news that four of our volunteers had died.

John Isherwood became a volunteer for BCA in 1986 and continued his worksupporting ostomates in the Manchester area when BCA became CA. Geoff Newman from Cranleigh in Surrey became a volunteer in 2002, first forBCA then for CA.Sheila Walker was one of the original Trustees when CA was formed in November 2006. Sandy Wood from Perth became a volunteer in 2005 and visited ostomates andattended open days in the East of Scotland. At Sandy’s funeral a collection was taken for the Colostomy Association and his wife, Sheila, sent a cheque for £200 as a donation to our funds.

The Colostomy Association sends sincere condolences to all those close to these most valued volunteers.

We hope you all had a peaceful Christmas...with thestart of a brand New Year, we would like to take this opportunity to thank all our readers, membersand supporters for their help past, present and future.

We will continue to bring you Tidings and lookforward to receiving your input and feedback, so we constantly keep improving your magazine...

UpfrontHelpfulGroups & Organisations

Dedicated to Colostomates and their Carers

FeedBack We hope you have enjoyed this edition of Tidings and look forward to bringing you the next edition...We are always trying to improve your Magazine and welcome your feedback.

Tidings is your MagazineIf you have a story, article, letter or any other item you would like to be included, please post them to The Editor. Alternatively e-mail to our contact details below. We look forward to hearing from you and will do our best to include your contributions.

Colostomy Association15 Station Road Reading RG1 1LGTel: 0118 939 1537 Freephone: 0800 328 4257 E-mail: cass@colostomyassociation.org.uk

Visit our web sitewww.colostomyassociation.org.uk

Other Ostomy Support Associations...

• ia (The Ileostomy and Internal PouchSupport Group)Freephone: 0800 0184 724www.the-ia.org.uk

• Urostomy Association Tel: 01889 563191www.uagbi.org

• National Advisory Service for Parents of Children with a StomaTel: 01560 322 024www.naspcs.co.uk

• IOA International Ostomy Associationwww.ostomyinternational.org

• Gay Ostomates Websitee-mail info@gayostomates.orgwww.gayostomates.org

Support Organisations for medical conditions...

• Macmillan Cancer SupportTel: Switchboard 0207 840 7840Freephone: CancerLine: 0808 808 2020YouthLine: 0808 808 0800www.macmillan.org.uk

• CancerbackupFreephone: 0808 800 1234www.cancerbackup.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

• Incontact(Incontinence & Diverticular disease)Tel: 0870 770 3246Web: www.incontact.org

NATIONAL KEY SCHEME

How to obtain a key to gain access to toilets for the disabled

Colostomates are entitled to a key which will open 7,000 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: 0800 328 4257 for an application form.

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

RADAR also publish a guide which lists all the NKS toilets throughout the UK (cost £10.25).

Out of Hours TelephoneHelpline Service

Did you know that the CA FreephoneHelpline is manned during the eveningand at weekends?

When our head office closes at 5pm allour 0800 328 4257 calls are transferredto a team of thirteen volunteersthroughout the country. All thesevolunteers have successfully completedthe Telephone Helplines Associationtraining courses. They all have acolostomy themselves therefore knowwhat it’s like to live with a stoma andare able to provide practical help,support and reassurance. However, theadvice given is strictly non-medical.

Out of hours our volunteers answer thecalls from their own homes. On rareoccasions a volunteer may be unable totake your call immediately. Should thishappen, please leave your name andnumber and the volunteer will phoneyou back. If possible could routine callsor those requesting literature be madeon a weekday between 9am. & 5pm.

So remember, if you are a newostomate or are finding it difficult tocope with your stoma and feel thatspeaking to someone else who alsohas a colostomy might help, ring0800 328 4257.

Update on CATIP

The Colostomy Association TravelInsurance Policy (CATIP) has now beenin place for nearly five months and weare issuing about fourteen policies eachmonth. Commission earned by theassociation for the first four months ofoperation amounts to £265.

Based on feedback received, we feelthat there is a need to clarify the detailsof the “special” arrangement relating toostomates which has been agreed withthe insurers. A colostomy, ileostomy orurostomy alone if it was formed morethan two years prior to thecommencement of cover under thepolicy does not constitute a “pre-existing” condition and does not needto be referred to the insurers. Hopefullythis will enable more of our readers tobenefit from the preferential rates thatthe insurance company are able toprovide.

If you would like more information,and a quotation, please visit our website:-www.colostomyassociation.org.ukand click on the travel insurance link.