Dedicated to Colostomates and their CarersSummer 2007 Issue 6

inside...join us for ourfirst national meetingin association with Salts Healthcare

diverticular diseaseexplained

a day in the lifeof a clinical nurse specialist

plus all ourregular features...

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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 McKenzieDatabase Administrator

Design & Production

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

John Townsend - Account ManagerLamport Gilbert Limited

Dear Readers..

Travel proved to be a “hot topic” in our lastissue of Tidings; we were inundated withrequests for our travel certificate. As a spin-off from our article on travel insurance, wehave been able to negotiate a schemespecifically for ostomates, the ColostomyAssociation Travel Insurance Policy. See thearticle on page 17.

Readers who have written to say that themagazine concentrates on people who havehad cancer will be pleased to see that thistime we include reference to a variety ofother conditions which may lead to stomaformation. After cancer, the second mostcommon reason for a stoma is diverticulardisease, so we have an article whichexplains this condition on page 8. A ladywho was born with bowel and bladderproblems and has both a urostomy and acolostomy recalls her inspiring life story, anda thirteen year old gives a candid accountof her diagnosis of Crohn’s disease andsubsequent colostomy.

Calls on the helpline also often ask forinformation about colostomy reversal andindeed in this issue of Tidings we haveletters about this subject on both the DearNurse and Readers’ Writes pages. So in ourautumn edition we are planning to includearticles written by stoma care professionalsexplaining what the different types ofreversal operations entail and the pros andcons of opting for surgery. We would alsolike to hear from readers who have hadreversals about their experiences - bothgood and bad.

You will see from the announcement onpages 5 & 6 that the Colostomy Associationis holding a national meeting sponsored bySalts at Sutton Coldfield on Thursday 6thSeptember. The editorial team will bemanning a stand at this event and we hopeto meet as many of you as possible so youcan tell us what you would like to readabout in your magazine, Tidings.

Best wishes,

Rosemary BrierleyEditor

If you have a story, poem, article, letter orany other item you would like to appear inTidings, please send them with any relevantphotos or pictures to: The Editor, ColostomyAssociation, 15 Station Road, ReadingBerkshire RG1 1LG or e-mail them tocass@colostomyassociation.org.uk We willdo our best to include them.

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

Dear Readers 3

From very poorly to Fighting Fit 4

Competition Results 4

The Colostomy AssociationNational meeting 5

Diverticular Disease 8

Young Colostomates 12

Wind…Ballooning, Odour & Noise 14

UpdateNew Products and Services 16

New Travel Insurance Policyfor Ostomates 17

Welfare Benefits 18

Cynthia’s Story 20

Dear Nurse 22

A Day in the Life of Clinical Nurse Specialist, Julie Rust 24

I Sang in Carnegie Hall 26

A Reader’s Reply 28

Hypnotherapy for Ostomates 30

Reader to Reader 30

Support Group in the Spotlight 32

Update on Department of Health Consultations 33

Readers’ Writes 34

Fundraising 36

Support us…Become a friend 37

Donations & Standing Order 38

Upfront 40

I would like to share my husband’s storywith your readers. This is mainly for thepeople who are frightened at thebeginning of a difficult journey, and alsoto acknowledge the amazing recovery thatis possible.

Tony was a healthy, active fifty-five yearold when he was diagnosed with bowelcancer in September 2005. We were bothshocked, and in fear of the treatmentsplanned - and the outcome.

After many tests and various scans, wewere told there was only one tumour, verylow down in the bowel, but it was a largeone.

So twenty doses of radiotherapy and amonth of chemotherapy commenced. Thetreatments ran concurrently, and slowly

wore Tony down until he became poorlyand stayed in bed for most of December.To think, it wasn’t the cancer making himpoorly, it was the cure!

In January 2006 Tony started to feelbetter. He walked every day and graduallybuilt himself up to be as strong aspossible ready for his surgery. A scan atthis point showed the tumour had shrunkby 50%. Hurray for radiotherapy andchemotherapy!

The following month the surgery wentahead. Tony had his anus removedcompletely, and his colostomy ‘installed’.After two weeks in hospital I brought himhome. We were both nervous and hesitantof our new way of life. The nurses visited;their support and understanding calmedus down, and we slowly settled into our

new routines. We had a lot to learn, butthere was always someone to offerguidance and advice.Tony made a steady recovery and soonbecame confident in caring for his stomawho we christened ‘William’ (mainly afterthe mischievous ‘Just William’ but a littlebit after William the Conqueror).

Six months after the surgery Tony had ascan and blood test which came back ALLCLEAR. After holding our breaths formonths, we started to breathe again. Itwas June 2006 when Tony went back towork. He was given a lighter job on theadvice of the company doctor and reallyenjoyed getting ‘back to normal’. Hisemployers and colleagues have showngreat understanding through a verydifficult time and so have all our familyand friends.

In September 2006 Tony flew to Austriafor a few days with our son, Chris. He wasa bit apprehensive but with Chris to leanon, off they went. They had a wonderfulconfidence boosting holiday. I think theenclosed photograph reflects how far Tonyhas come – from being very poorly tofighting fit in twelve months.

It will be a year neither of us will everforget. We still have difficult momentswith William, but nothing that we can’tdeal with and usually manage to laugh at.Tony thought a permanent colostomywould mean the end of the world andreally feared it, but it’s not. It’s just thestart of a whole new chapter.

The cancer took a year out of Tony’s life;the colostomy gave him a second chance.

Alison Hunt

4 Tidings

From being very poorly to fighting fit in twelve months...

Name Your Stoma Competition...In the last issue of Tiding we asked you to help us decide on the winners. We have counted your votes and here are the results.

The Best NameWinner The Privy Purse (sent in by S. Grimshaw) Second place My Appliance of ScienceJoint third Little Iffie

Percy

The Best LetterWinner Polly Pocket (sent in by M. Evans) Second place DooperThird place Colin

Congratulations to both winners who each receive a £25.00 M&S voucher.

Thank you for your entry, Emily (aged seven)Hope you enjoy spending your £5.00 W.H. Smith voucher.

You are invited to the first

Colostomy Association National Meeting

Thursday 6th September At Ramada Jarvis Hotel

Penns Lane, Walmley, Sutton Coldfield B76 1LH

“Changing Times”“Changing Times”

If you would like to attend, please complete the slip below and return it to:-

Colostomy Association Meetingc/o Salts Healthcare, Freepost RLUZ-XJBU-BZAH,Birmingham B7 4AA. (no stamp required).

In association with Salts Healthcare

I would like to attend the Colostomy Association National Meeting

I will / will not* be bringing a guest (*please delete as applicable)

Name:

Address:

Postcode: Telephone:

E-mail address:

We will post your ticket/s and further details to you nearer the time

In association with Salts Healthcare

COACH TRAVEL

Please tick if you would like a seat/s booked on one of the coaches

Manchester: 7.00 am at Chorlton Street Bus Station (next to Britannia Hotel)

Bristol: 7.30am at Anchor Road, Bristol City Centre

London Heathrow: 7.00am at Hatton Cross tube station

M25 East: 7.00am at Lakeside shopping centre

Leeds: 6.30am at West Yorkshire Playhouse

Sheffield: 7.15am at Meadowhall Coach Station

Please note: Numbers are restricted and will be allocated on a first come first served basis

Registration opens at 9.30am,conference starts at 10.30am prompt

The meeting will include:Talks by a surgeon and nurse on herniasUpdate on the Department of Health’s Consultation Documentregarding the provision of stoma care products and servicesFind out about the new Colostomy Association and its plans for the futureA chance to see the latest Salts ostomy products and accessoriesAn opportunity to meet other colostomistsLunch and refreshments will be providedFree coach travel available from a number of cities

8 Tidings

What is diverticulardisease (DD)?DD develops when smallprotrusions (sacs) appear in thewall of the large intestine –usually in the sigmoid colon.These protrusions are known asdiverticula, and are the size ofsmall grapes. They are surprisinglycommon. Within the UK, about aquarter of the population over theage of forty have diverticula, andthis proportion rises to about halfof all British people over seventy.

Thankfully, only about 15% ofpeople with diverticula everexperience any symptoms fromthem, but this still leaves quite a large number of people affected.Within the UK, about 450,000people have symptoms from DD at any one time, with about60,000 new cases a year. Hospitaladmissions for serious cases of DDare about 17,000 per annum, andmore than 4,000 people die eachyear from severe complications of DD.

Diverticular DiseaseBy Peter Cartwright MSc MA

In 2002 Tidings carried out

a survey of its readers.

Of the 2,800 colostomates who

responded, 10% gave diverticular

disease as the reason for having

their stoma.

Sigmoid colon

Peter Cartwright has an MScin Microbiology and an MAin Sociology. He also haseighteen years experience of working for patient andself-help associationsincluding the N.A.C.C. andhas published books onulcerative colitis and Crohn’sDisease.

Readers Survey 2002

Dedicated to Colostomates and their Carers

Readers who had their stoma due todiverticular disease may be interestedin the book ‘Copingwith Diverticulitis’ by Peter Cartwright which is publishedby Sheldon Press at£7.99p. ISBN: 9780859699853

Illustrations reproduced courtesy of Peter Cartwright MSc MA. ©2007.

Tidings 9

SymptomsThe main cause of symptoms fromdiverticula is the development ofinflammation in the region of adiverticulum. The inflammation is knownas diverticulitis and is probably caused byfaeces lodging in the neck of thediverticulum and rubbing against thenearby tissues. Diverticulitis causescontinuous abdominal pain and alteredbowel habit (constipation or diarrhoea, oralternating between the two).

Diverticulitis is treated by antibiotics and alow-fibre diet. In about two-thirds ofcases of diverticulitis, the person has nofurther trouble from their diverticula.However, if there is a recurrence ofsymptoms, a complication of diverticulitis,such as an abscess, may develop.

Complications of diverticulitis lead tosevere pain, sometimes sufficient towarrant admission to hospital. Intravenousantibiotics and bowel rest (intravenousfeeding) usually overcomes the problem,but in about a quarter of cases surgery isundertaken. Surgery is necessary becausethere is a risk of perforation of the colonicwall and dangerous peritonitis developing.Surgery involves the removal of thedamaged area of intestine and theformation of a temporary colostomy. Aftersome months, a second operationreconnects the healthy parts of the largeintestine and the colostomy is closed. Inabout a third of cases, the patient decidesto keep the colostomy and to forego asecond operation to avoid the discomfortand associated risks.

Although most symptoms are caused bydiverticulitis, in about 15% of cases thefirst symptom is haemorrhage (copiousbleeding), which is unconnected todiverticulitis. The haemorrhage, from theback-passage, is usually painless. It can,however, be very worrying as it usuallyoccurs without warning and its cause isinitially uncertain.

People affected are taken urgently intohospital to undergo various tests, toconfirm the cause. If it is caused by DD,

the most likely explanation is the ruptureof a blood vessel stretched over adiverticulum. This usually occurs atdiverticula in the ascending colon, wherediverticula tend to be larger. In most casesof diverticular haemorrhage, the bleedingceases of its own accord. If bleedingcontinues, then the affected area mayhave to be surgically removed.

How are diverticula formed?As a child, do you remember having abirthday party at home with balloons? Thefollowing morning you would find thatsome of the balloons were partly-deflated,having leaked most of their air overnight.I remember playing with these balloons byholding one in my hands and squeezing.The effect was that a bit of the balloonwould pop out from a gap in my hands. Adiverticulum forms in a similar way. Justas part of the balloon was forced out ofmy hands by the pressure created bysqueezing, so diverticula are formed byhigh pressure within the large intestine.

But why is there high-pressure within thelarge intestine? This is where dietary fibrecomes in. Dietary fibre is the part of foodthat is not digested by human enzymes.Therefore, if your diet contains plenty offibre, there will be plenty of substanceremaining as the undigested part of foodreaches the large intestine. The bulkier thefaeces the more easily the content ismoved about by the muscles in the wall ofthe large intestine. If, however, there areonly small amounts of fibre in the faeces,troubles start.

The main function of the large intestine isto remove water from the faeces, partlybecause water is an essential part of thebody and partly because solid faeces areeasier to control than liquid faeces. Onaverage, the large intestine takes two daysto move faeces along its length. Thisinvolves the muscles of the outer layer ofthe intestinal wall contracting. Mostly themuscles will push the faeces backwardsand forwards in the same area of the

Diverticular Disease

The cause(s) of DDThe main cause of DD is a lack offibre in the diet. This conclusion hasbeen reached for the followingreasons:

• Diverticula of the intestine are aphenomenon of the developedWestern world, and started to appearat the beginning of the twentiethcentury when food products, such asbread, were refined to reduce the fibrecontent.

• The diet in populations with nodiverticula, such as rural Africans, hasa much higher proportion of fibre,which is reflected in the weight ofdaily stool excretion being four timesgreater than among Europeans.

• People with diverticula tend to havesignificantly less fibre in their usualdiet, compared with people withoutdiverticula.

Other factors in the cause ofdiverticula are thought to be:

• Ageing• Red meat consumption• Lack of exercise

Of these three secondary causes, thestrongest evidence is found for theageing process.

10 Tidings

colon, and then occasionally there will beone big push in which the faeces arepushed substantially along the length ofthe colon.

If, however, the person’s diet containslittle fibre, the faeces will contain littlesubstance in the large intestine, and thecolonic muscles will strain. A consequenceof the colonic muscles straining is thatflexible muscle proteins change theircharacteristics and become thicker and lessflexible. The combined effect of thesechanges is that the sigmoid colondevelops a corrugated shape (concertina-like). This means that when the colonicmuscle contracts to move the contents,high-pressure compartments are formedwithin the colon. The high pressure isreleased by the formation of diverticula,which involves the forcing of the innerlayer of the intestine (mucosa) throughthe muscle layers of the colon.

As people age, their colons become a littleless flexible and this may increase thelikelihood of diverticula forming. Theapparent benefits of increasing exerciseand reducing red meat consumption donot have clear explanations. It is possiblethat regular exercise may provide a betterblood supply to the colonic muscle andmay reduce the tendency to inflexibilityover time.

Prevention of DDThe key to preventing DD lies in eating ahigh-fibre diet. Not only is there goodevidence that such a diet reduces thelikelihood of developing diverticula, butalso that dietary fibre reduces the risk ofdeveloping symptoms in people whoalready have diverticula in their colon.

Dietary fibre is absent from meat, but ispresent in cereals, vegetables and fruit.Most fibre is found in the rigid walls thatsurround the cells that make up plants.

Eating plenty of whole foods not onlyincreases the amount of fibre in your diet,but also gives you major nutrients, as wellas minerals and vitamins. Fibre has otherhealth benefits such as reducingcholesterol in the bloodstream.

There are two main difficulties inincreasing the amount of fibre in one’sdiet. Some people live fast-paced lives andmay not have enough spare time to easilyprepare and cook whole foods.Furthermore, people in the UK should, onaverage, be looking to increase theirdietary fibre consumption by between50% and 100%. This is a substantialamount, and it is not always easy tochange one’s eating pattern to achievethis. One way of easily increasing fibreintake is to add bran supplements to yourusual foods. Bran is approximately 40%fibre, compared with about 2% in mostplant foods. Wheat bran consists mainly ofinsoluble fibre, which is a type of fibreespecially helpful in counteractingdiverticula development.

The futureRecent statistics have shown that DDsymptoms are continuing to rise infrequency within Europe. Over a recentten-year period, the increase has beenmore than 50%. Most of this increase iscaused by people living longer, as theolder you are the more likely you are tohave trouble from DD. But about a fifthof the increase is unconnected to theageing population, and may be due toincreased consumption of low-fibre foodssuch as ready-made meals and ‘junkfoods’.

It is therefore more important than everthat the younger generation is advised ofthe importance of high-fibre diets.

Grain (cereal) products

Fruits

Vegetables

Legumes (peas and beans)

Nuts

Whole grainwheat, rice andcorn (maize)products, such asbran flakes,shredded wheat,brown rice andwholemeal bread.Other grains areoats, millet,barley, sorghumand rye.

Avocado, apricotsand unpeeledapples and pears.

Cabbage, broccoli,brussel sprouts,cauliflower,carrots, celery,pumpkin,sweetcorn,spinach, asparagusstems and bakedpotato with skin.

Almost all typesof legume,including gardenpeas, Frenchbeans, kidneybeans and bakedbeans.

All nuts, especiallyalmonds andpeanuts.

Diverticular Disease

Of the different categories of food,those with the highest amounts ofdietary fibre are shown in the tablebelow:

Tidings 11

I woke early on Christmas day

morning to see what gifts I had

received. Well strictly speaking I

“came round”. My gifts were not as

usually expected at Christmas – an

eleven inch wound down the centre

of my stomach, thirty-one staples

and a stoma and colostomy bag!

Perhaps I had better start at

the beginning!

It began on Sunday December 17th 2006during the evening. I had severe lowerabdominal pains which got worse as thenight progressed. I am not, by any means,a hypochondriac but by three in themorning I was on the phone to NHSDirect for guidance. I was advised to makean urgent appointment to see my GP. By9.30am on Monday 18th I was diagnosedwith acute Diverticular Disease andprescribed an antibiotic. I was in toomuch pain to drive to work so took to mysettee in front of daytime TV – normallyenough to send any able bodied individualback to work! By Thursday the pain wasworse and at a return visit to my GP I wasgiven a letter to take to the City Hospitalin Nottingham for a “few tests”.

Naturally being an innocent in all this Idrove to the hospital confident that Iwould be home by lunchtime. Little did Iknow I was in for the duration! I hadblood tests, X-rays and eventually a CTscan. By mid afternoon I was gettingworried that my car – with a four hourparking fee - would be getting clamped ortowed away. The ward sister kindly rangsecurity and I was relieved to be told itwas safe. However by Friday morning –

yes I was still there – I had to arrange fora friend to come and take my car away asI was told in no uncertain terms that Iwas going nowhere. The CT scan hadshown a tumour on my large colon thatwas bursting and about to infect me withperitonitis.

Shortly afterwards an ambulancetransferred me to the Queens MedicalCentre where I was placed in a specialistward. As Christmas was only two daysaway the consensus was that I would notbe operated on until after the festivities.How wrong! At about 10pm on ChristmasEve I was wheeled to the operatingtheatre and the next I knew was when –as I said above – I awoke with myChristmas gifts!

I am a reasonably fit sixty-six year oldmale still working full time in quite anactive profession so all this was a greatshock to me and my system!

Luckily there were no complications afterthe operation, which I learnt was theHartmanns procedure and I was sooninstructed by the Stoma Nurse team howto manage my colostomy bag and mydiet.

Because of the Christmas holidays I wason tenterhooks for days until the Path Labreassured me that the tumour was benignand that I should make a full recoverywith no side effects.

I was discharged on 4th January this yearand was at home recuperating for nearlysix weeks. I returned to work part timeand gradually over three or four weeksreturned to full time work. I managedquite well with my colostomy bag but wasanxious for a reversal, so when I realisedthat my company health scheme wouldfund the procedure privately I jumped atthe chance.

In late April 2007 I had a colonoscopy tocheck if everything was in order for thereversal and I was booked in on 3rd May –just over four months from the originaloperation. It was decided that a

laparoscopic technique would beappropriate as this was less intrusive andwould enable me to be up and about farsooner. My consultant in Nottingham wassuperb and talked me through theprocedure in great detail and I was happyto give my consent for the operation toproceed.

I was in theatre at 8am and back in myroom just after noon. I must thank theteam at Park Hospital in Nottingham fortheir fantastic skill and expertise inmaking it all possible.

Three days later on Sunday 6th May I wasallowed home to recover again. On 13thMay I had my first batch of wound staplesremoved, had a reasonable diet and wasable to walk around quite well. I was stillin some pain but I felt far better than Idid in January after the Hartmanns.

I had a mild scare two days later with asudden bout of diarrhoea and passingblood but was reassured by both GP andConsultant that this was quite normal andpredictable and that I was not to worryunless the symptoms continued.Fortunately after a couple of days I wasback to normal and very relieved.

I have to return to outpatients for theremaining staples to be removed and amlikely to be back at work in three to fourweeks time.

If there are any developments I will keepyou informed.

I am writing this in the hope that itmay help others in the samecircumstances who may have been asfrightened as me and not know what toexpect!

Andrew Legg

Diverticular Disease - A Readers Experience

Andrew Legg

Young Colostomates...I am 13 years old and have Crohn’sdisease. It all started when…

I finished primary school in 2004 andwas looking forward to the summerholidays and my new start at BelleVue Girls’ School. The week I left myold school I began to get lower backpain. I took painkillers and the painwent away but only for a little while.A week later it was back, much worsethan before; I could not sit down orsleep properly. Mum took me to theGP, who examined me and said thatthe symptoms might mean an abscessthat would probably have to bepopped. She prescribed someantibiotics to make it surface quickerand said that I’d be fine in a month.

Things were OK for a while then Inoticed some yellow discharge when Iwent to the loo. The GP inserted aninstrument into my bottom. When sheremoved it and I was flinching withpain the doctor said, ‘Salma, stopfussing. There’s nothing there!’ Ifound this absolutely ridiculous andshocking because even though I wasan eleven year old I still knew whatwas up with my body and whatwasn’t!

The following week my bottom areawas red and sore so she gave mesome more antibiotics and referred meto the hospital. Back home I was sickwith fever, vomiting and diarrhoea butthere was still nothing to indicate thatthere was an abscess. On Sunday22nd August after an awful night myparents decided to take me to A & E.Normally you have to wait four to fivehours, but this time they took mestraight through to see a doctor.When he examined me he confirmedit was an abscess and it was too bigto just burst - plus this wasn’t anordinary abscess: it was facinginwards so there were no marks onthe outside. I had to have theoperation at 7pm that evening. Ithought that I would be out in aweek and hopefully go to school asnormal but it didn’t end there…

On 3rd September I was dischargedfrom hospital. After three gruesomeoperations I was left with a hugedrain - going to school was out ofthe question. So much for my “firstday at high school”- that’s something

I’ll never experience. I had hometuition instead - twice a week for fivehours. The problems were still there. Ihad difficulty going to the toilet; itwas very painful and stressful. I neverput back the weight I had lost. It wasa long haul because the abscess wasvery nasty: three inches deep and ithad made a tear in my anus. Thedoctor warned us that I may need acolostomy.

I stayed at home until January 2005and then I decided that I wanted togo back to school. The school nursesand teachers were very helpful andthere were excellent facilities. I had amedical card which allowed me to usethe toilet in the middle of lessons etc.After spending a fair bit of timecatching up I was on track and putback on the Gifted and Talented list,a group of pupils above nationalaverage. I struggled trying to keep mytoilet problems out of school hours.When I got home I didn’t have thetime to even say ‘Hi’ to Mum; I justrushed to the loo.

I had times when for two weeks I waspain and trouble free. Then there wasa week where I would have throbbingpain in my bottom and a while later Iwould have lots of pus coming out ofthe drains. I had various examinationsunder general anaesthetic and thedoctor would remove and replacedrains to adapt to the flow and sizeof the abscess. It was healing, but itwas taking too long and I was, andstill am, running out of patience.Although before I had felt hollow onthe right hand side of my bottom ithas somewhat managed to fill the gapwith some parts still remaining. Ibecame friendly with all the nurses onWard 2 at Bradford Royal Infirmaryespecially the nurse who visited meevery week to do the dressings. I hadto change it twice a day and alsowear a sanitary towel 24/7.

Anyway on 18th July 2006 I hadanother of my many hospitalappointments; this time it was to getthe results of the biopsies they hadtaken at my last operation. They didthis every time and they always cameback clear, so what was the big dealthis time? Well it was a big deal thistime because I had Crohn’s disease.The doctor said, ‘It’s a disease of the

digestive system anywhere from themouth to the anus. It cannot be curedbut there are many treatments so Iam referring you to agastroenterologist who is an expert onthis condition, but I will still treat youwhen you need surgical procedures.How do you feel?’ While he wasbabbling on I broke down in tears. Somany things were going through myhead: What’s that? When did I starthaving it? Will I get better? Will I staylike this? Forever? Will I die? Well I came to find out I won’t die -so that was a relief. The Crohn’s wassituated around my lower colon,rectum and anus. I was devastated.What would I tell everyone? They kindof figured it out soon because thatsummer was also ruined like the pastthree. I had every symptom in thebook: fever, sickness, diarrhoea. A rashthat was thought to be eczema cameout of the blue because of the heat-wave but it turned out it was only arare rash that some people get as aresult of Crohn’s. To carry on the list Ideveloped a urine infection then I gotto the stage where the old dry skinfrom the ‘eczema’ was peeling away;my bedroom carpet was disgusting. Ihated every bit of it - and it was allbecause of Crohn’s.

I had an appointment to see thegastroenterologist on the 11thOctober. A lovely person to talk toplus she was a woman so I could talkabout my problems without having ared face like I did when it was a maledoctor. I started medication,Metronidazole and Mesalazine, whichwere anti-bacterial and anti-inflammatory drugs. These made asignificant difference; I was feelinghealthy and full of life but going tothe toilet was still painful. Later thenext month I had a small barium mealand a colonoscopy. The results werefine: only a spot of Crohn’s in mycolon.

After that I was told I couldn’t carryon with life as it was. I needed to trythings to see if they worked out andmade a difference. Steroids were outof the question because I was stillgrowing - I mean I haven’t evenstarted growing! So it was either acolostomy or this new drug calledInfliximab. However, this new drugwas quite strong. It did do the job

12 Tidings

Young Colostomates...but that didn’t change the fact that itwas risky. For the majority of people itwas successful, but the effect it hadon teenagers and youngsters was notknown. So I was advised not to optfor that. Even if it did work miracles Iwouldn’t risk my life - No way Jose.So I was left with a colostomy - Yesthat again. So many times I had beenoffered this and I refused because Ithought it was a bad thing. Also Ididn’t know that this whole thingwould turn out to be more than justan abscess - that it would be Crohn’s.It’s weird but the doctors suspected itall along but never let on until it wasdefinite.

So the date was set Wednesday 28thMarch 2007 - first on the theatre list.I was really nervous. I’m not usuallybecause I know the drill. It’s in you goto the theatre, the doctor has a goodlook, takes biopsies, takes out thedead skin and gives it a good clean.But this time it was different. I wouldbe different when I woke up. I wouldhave changed.

It was OK… when I woke up they hadgiven me an epidural so I was “right

up there on Cloud Nine”. Yeah, it wasthe drugs. I was quite happy and jollyand the nurses warned me, ‘Don’t besurprised if you’re feeling downtomorrow.’ And boy was I down, I wasdownright moody! I had changed thebag myself and seen the stoma; theswollen pink blob looked huge on myskinny body. For some reason afterseeing it I kind of regretted having itdone. Maybe I was confused but Iseemed to fear what was to come. Adoctor came on the Friday andconfirmed I could go home, and ofcourse I wanted to, so I packed mybags and that night I was at home inmy own room, in my own bed.

Well, four weeks on I feel brilliant!The discharge from my bottom is lessand I’ve got two drains to make surethat no pus is held back. I managethe stoma fine; I change it once a dayand empty it if needed throughoutthe day. I have recovered well fromthe operation. It took me two weeksbut the thing that worries andsurprises me is that the three year oldabscess is still with me. I chose tohave a stoma and I think it was theright decision because I don’t worry

about toilets anymore. I am cheerierthan usual as my friends have noticed.Even my dad mentioned this morningthat I am less moody and I seem tohave put on weight around my face -well it’s either that or my sore mouthfrom my braces! Now I seem to wantto do things: I want to go out. I wantto go to school. I want to join inclubs, activities, etc. My mum said,‘Just a little more patience and you’llget there.’ So hopefully, everyone,keep your fingers crossed.

Fourteen operations, a million andone appointments and lots of painlater I am finally on the up…and Ihave a HUGE smile glued to my face…

Salma Ahmed

Salma would like a pen-pal, preferablyabout the same age as herself. If youwould like to write to her, send yourletter to head office and we will passit on.

Children and teenagers are often overlooked when it comes to living with astoma. Many young people feel unable to talk to their peers and can feelvery alone at times…but all this is about to change!

Breakaway is the first ever UK adventure weekend,specifically for kids with stomas and their families.The weekend is designed for young people betweenthe ages of six and eighteen with bowel or bladderdysfunctions. The weekend has been devised and organized by people with a full knowledge of livingwith bowel or bladder problems. This is a unique opportunity to meet families in a similar situation, totalk and share experiences and to take part in confidence building, action, adventure activities. In theUSA they have annual camps for children with stomas, which are very successful, so hopefully this willbe the first of many in this country.

The ‘Breakaway Weekend’is to be held on 17th-19th August2007 at YHA, Bryn Gwynant,Snowdonia.

Details about the weekend...

- A weekend of adventure, activities,

fun and support.

- Activities may include archery, high

ropes, canoeing, climbing, hill walking

and mountain biking.

- Accommodation in comfortable rooms

including many en-suites.

- Dietary requirements catered for.

- Support and advice from stoma nurses

during the weekend.

- Funding support.

- All accommodation, meals and activities

for only £130 per person, including

exclusive Breakaway Weekend T-Shirt.

A Date for your Diary...

Want to know more...log ontowww.breakaway-visits.co.ukor contact: 0775 1560013

Tidings 13

14 Tidings

Wind...Ballooning, Odour and Noise

Everyone produces wind, but for colostomates, who cannot control when it is released, it can bea problem. We put your questions about wind (flatus) and in particular odour and ballooning toDr Rory Smith from Welland Medical Ltd.

The major factor is undoubtedly gasproduction as a result of the breakdownof food. This is a completely naturalprocess and a direct consequence ofdigestion. Stomach acid, enzymes and bileall contribute to the breakdown of ourcomplex food into simpler chemicalmolecules, some of which are absorbedand the remainder pass through theintestines as waste. The continuedbreakdown of the waste in the gutliberates a complex mixture of chemicalsas a gas. The precise composition andvolume of flatus is directly affected bydiet.

Some foods such as cabbage, cauliflower,sprouts, beans, peas, onions, nuts,cucumber, carbonated drinks and beer canincrease the amount of flatus which istypically about 500ml per day. Some ofthese and also eggs, garlic and asparaguscan generate odour because of thebreakdown products produced.

Generally the type of odour produced fallsinto one of two broad groups.Those containing sulphur from thebreakdown of certain amino acidscontained for instance in eggs. The other group of complex organiccompounds containing oxygen and/ornitrogen (butyric acid, indoles andskatoles) from the breakdown ofsubstances found in certain greenvegetables and fish. Methane, nitrogenand carbon dioxide are also present inflatus.

A well designed activated carbon filter ona stoma bag should deal with the broadspectrum of odours contained in flatus asthe gas flows through and is vented fromthe inside of the bag into the atmosphere.The type and density of the carbon andthe length of the pathway through whichthe gas travels are all factors in theeffectiveness of the deodorization process.

If the rate at which an individual producesflatus is greater than the pre-set flow rateof the filter, the bag will inflate and thepressure in the bag can be uncomfortableand cause the bag to be obvious underclothing. This is referred to as ballooning.

The effect can be made worse if the filteris partially blocked by waste in the bag.This has the effect of reducing the flowrate through the filter and exaggeratingthe problem. Many manufacturers providesome form of filter protection to reducethe effect of filter blockage.

If ballooning is a problem for theindividual, careful attention to diet tocontrol the rate of flatus production, andselection of a bag with a filter flow ratethat provides a good match to the rate offlatus production is the key.

Rory Smith

What causes wind?What is the best way to combat odour?

What is ballooning?

At present there is very little that can be done about the embarrassingproblem of stomal noise. However we received the following newsbulletin from David McDermott,Director of Meditech Technology.

Silence stomal noise, restore privacy and dignity

Most patients report that an especiallytroublesome aspect of life after acolostomy is the loss of privacy of bowelmovements. The various noises producedas the colon expels solid, liquid and/or gasare unpredictable and uncontrollable. Thisis a major inconvenience often adverselyaffecting quality of life, limiting socialengagement and undermining even theclosest personal relationships.

A team of medical and businessprofessionals has just completed researchat Northwick Park Institute for MedicalResearch into how to control thistroublesome post-operative side-effect ofa colostomy. They have established

precisely how stomal noise is producedand how to silence it with a simple,inexpensive, disposable device compatiblewith current stoma-wear! Funding is nowurgently required for prototypes.

Research and development to date

What causes stomal noise? Understanding how it is created isessential for the development of devicesfor the elimination of this noise. It wasestablished that gas became trapped atthe point where the stoma narrows as itbreaches the peritoneal wall. Normalperistalsis causes a build up of pressureuntil the stoma’s natural elasticity iscompressed and a small conduit is createdallowing the air to escape. The extent ofthe pressure build-up determines thespeed and sound of the evacuation. It isnot possible to control the activity of astoma and regulate the release of thisbuild-up of pressure.

Potential ways to silencestomal noiseThe team developed a number of safe andeffective ways of regulating the release ofgas so that it made no noise. Clinical

devices have been designed that arecompatible with commonly used stoma-wear and do not impede the stoma’snormal functions.

Next steps

Prototypes and clinical trialsTo date, all research and development hasbeen funded by a combination of privatesector investment and public sectorfunding (SMART award) but this is nowexhausted. Completion of this next stage– refining the design, manufacturingprototypes, conducting clinical trials andobtaining regulatory approval – willrequire further private sector funding. Thecompany which has pioneered thisresearch is now looking for an investor ora small number of investors, who will helpbring relief to millions of patientsworldwide.

To express your interest in investing,please write or email:David McDermottDirectorMeditech Technology24 Grays Inn Road, London WC1X 8HPmeditech@jointventure.demon.co.uk

Tidings 15

“Free yourself. Free the planet.”

(FREESTYLE® FLUSHABLE USER)

If you often feel that trying to find somewhere to dispose of your pouch is ruling your life, you’re not alone. However, with new improved Freestyle Flushable this no longer needs to be the case as it simply fl ushes away.

FreeStyle Flushable has a new inner liner which is now even easier to remove and flush down the toilet. On top of which the inner liner is biodegradable so you can be sure you’re doing your best to help the environment.

New improved Freestyle Flushable – helping you enjoy more freedom in your life and free the planet.

For a free sample of FreeStyle Flushable please send your name, address details and telephone number to CliniMed Ltd., FREEPOST HY241, High

Wycombe, Bucks. HP10 8BR (NO STAMP REQUIRED) or call the CliniMed Careline on 0800 036 0100 or visit our website

www.freestylefl ushable.com.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. ©2006 CliniMed Ltd 868/0207

Manufactured by a CliniMed® Group company

FLUSHABLE

®

0257 Flushable Ad.indd 1 23/2/07 11:42:18

16 Tidings

Update...on new stoma care products and servicesFour companies contacted us withdetails of stoma care appliances andservices that have been introducedwithin the last few months:

CliniMed has just added a new two pieceproduct to its Freestyle Range.

Freestyle 2 Piece has a new low profile,double security coupling system.The pouch ring fits snugly around theraised ring of the base plate. Thecoupling is made doubly secure with anadhesive on the pouch ring which greatlyreinforces the seal. This gives ostomatesreassuringly high levels of securitytogether with the comfort normallyassociated with a one piece pouch.

Freestyle 2 Piece is available in two ringsizes and three pouch sizes: midi, maxiand maxi plus. The pouches are availablein both closed and drainable versions andhave a new, more modern beige colouredouter pouch fabric.

Oakmed have introduced a range ofpouches and wafers designed to meetindividual needs.

With three different types of wafer tochoose from, alginate, microskin andhydrocolloid, colostomates can select themost suitable for their skin type.

Alginates are clinically proven to helpheal sore skin. The wafer is bioactive so itactually helps to prevent as well as curethis problem. The wafer is alsoimpregnated with added vitamin E whichhelps protect the skin from free radicals.

Microskin is the thinnest wafer available.

Hydrocolloid wafers are extremelyflexibile and comfortable.

All wafer types are available in one ortwo piece systems with a range of pouchsizes. Samples can be obtained bycalling Freephone 0800 592 786

Dansac have launched a discreet closedpouch to suit your lifestyle.

As part of their commitment toimproving products and services forpeople living with a stoma, Dansac Ltdhas launched an innovative newcollection of one piece closed pouches.The Dansac NovaLife™ range has beendesigned to offer greater comfort,convenience and choice and features acompletely new pouch and barrierdesign.

The unique pouch shape is achieved bymoving the Dansac Nova Twin-Filterfrom the top of the pouch to the side,and placing it within a protectivechamber. This then makes it possible toposition the barrier closer to the top ofthe pouch resulting in a low-cut profile.A special heat seal prevents sagging andcreates a more discreet pouch which isless visible under clothing. The slim-linebarrier shape also optimises the adhesionaround the stoma, moulding to thecontours of the body and improvingsecurity.

The Dansac NovaLife™ range offers bothcomfort and freedom of movement whilethe discreet shape allows a greaterchoice in what you can wear.

If you would like to receive a freesample of the Dansac NovaLife 1Closed, or are interested in furtherinformation about the Dansac range of products and services, then pleasecontact Dansac on Freephone 0800581117.

Hollister Ltd is pleased to announce theintroduction of their new EducationalTheatre DVD for Ostomy Patients.

This instructive DVD can be used bynurses both as a technical guide and fortraining purposes. It gives patients andtheir families an understanding ofostomy surgery and demonstrates the useof stoma appliances.

The modular format of the DVD is adeliberate design, intended to enablepersonalisation of the EducationalTheatre by stoma type and product used(one or two piece system).

Part 2: “The Patients’ Perspective” will bereleased later in 2007.

Information on new products andservices received before 20th August2007 will be considered for inclusion inthe next issue of Tidings

Ray Goddard Managing Trustee

Delivery companies willing to sendstoma supplies abroadAddendum:

In our last issue we omitted toinclude the SecuriCare MedicalHome Delivery services (0800585125).

SecuriCare are happy to make afree-of-charge overseas delivery toclients who are away for morethan four weeks.

Dedicated to Colostomates and their Carers

Tidings 17

New Travel Insurance Policyfor Ostomates

In the last issue of ‘Tidings’ wepublished an article which wasdesigned to provide independentadvice on the perils and pitfalls ofarranging travel insurance. Wereceived an amazing response andhave, therefore, carried out somefurther investigations to assess therange of prices that insurancecompanies charge. Quotes variedwidely and rose considerably whenthe pre-existing condition (having acolostomy) was mentioned.Colostomies are widelymisunderstood by the travelinsurance industry and there is nodoubt that our members are beingprejudiced against.

It is, therefore, with delight that wehave been able to negotiate a specificTravel Insurance scheme designed forOstomates – The ColostomyAssociation Travel Insurance Policy(CATIP).

In researching this initiative we wanted toensure three very important features forour members: -

• Price competitive• Immediate policy issue• Wide insurance protection with a quality

and secure insurer

We have been able to satisfy all of thesepoints, and more, with the introduction ofCATIP; the Association will also receivecommission on every policy written. Everyostomate and, indeed, families friends andcontacts can buy a policy directly on line.We would encourage everyone to get themessage out that CATIP competes with anyother travel policy.

With CATIP we are moving from a situationwhere insurers run scared of us, or chargeridiculous premiums, to one where ourstandard terms are considerably better thanmost policies available, even for a personwithout a pre-existing condition. This isbest illustrated by providing a specificexample: -

We requested annual travel insurance for acouple in their 50’s, on a world-wide basisincluding USA and based upon having aColostomy for 14 years. The “standard” ratewas £109.99, which increased to £315.89once the pre-existing condition was

disclosed. Under the CATIP scheme thepremium would be £127.72 based on fulldisclosure with complete protection and norestrictions.

To provide a full comparison of prices, weobtained quotations from a wide range ofinsurers as detailed below:

Age Concern £188All Clear £199.94Free Spirit £204.80Worldwide £219Direct Travel £145

A further ten quotations were obtained butall did not include cover for pre-existingconditions and were in excess of the CATIPcosting.

All prices quoted were correct as at 26 April 2007.

You will be able to obtain immediatequotations, assess the full extent of cover,make your selection and purchase cover viaour own web site. Your policy will then bee-mailed to you. The scheme isunderwritten by Europ Assistance who arewholly owned by Generali and one of theworld’s leading insurers.

Our insurer will view all medical conditionssympathetically; they will even consider fullcover where there is a terminal diagnosis.The wearing of a colostomy bag does notconstitute a pre-existing condition andnormal terms, as indicated on our web site,will be offered. The travel cover will,therefore, apply full medical cover withoutpenalty. The obvious advantage toostomates using our dedicated travelinsurance scheme is that there can neverbe any question or barrier put up by theinsurer as a result of your stoma. If you aresuffering from any other condition, takingmedication or undergoing treatment, thenthis can be disclosed to the medicalscreening line as indicated on the web site.They will consider all such conditions.

The Colostomy Association Head Office hasvery little involvement administrativelywith CATIP and we would ask that youdirect any queries or problems to PeterMartin (01202 850142) who is activelyinvolved with the Colostomy Associationand is tasked with ensuring that thescheme runs smoothly.

Summary

CATIP is long overdue. We should nolonger tolerate the outdated approachshown by the insurance industry in theevolving medical world.

Do not accept travel insurance offeredby a travel agent or under a creditcard.

Our premiums stand up to anycompetition with the added bonus thatno individual with a colostomy will betreated unfairly.

Such are our premiums that we wouldencourage members to ask others tovisit and hopefully take out a policythrough us. The policy can apply tonon-members as well as members. Thisin no way detracts from the specialistfacility because we see this avenue asan income stream such that we cansupplement our all-round service.

CATIP gives you:

• Speedy quotations and policy issue.• Competitive prices.• All policies can be bought securely on

line.• Generous cover limits.• Security and re-assurance with a

world-leading insurer.

CATIP gives us:

• An income earning stream for theColostomy Association.

• Satisfaction because there is a realsolution to a real life problem.

• A certainty that, as ostomates, we arenot prejudiced against.

If you would like to obtain a quotationfor a Travel Policy please refer to theCATIP page on our websitewww.colostomyassociation.org.uk

18 Tidings

A colostomy on its own will not necessarilyentitle you to any of the non means-testedbenefits. However, if you are unable towork or need care because of the medicalcondition that led to your stoma or haveanother disability or illness, you mayqualify. It is always worth seeking advice ifin doubt.

For some people, treatment for bowelcancer involves pre-operativechemotherapy and/or radiotherapy, surgeryand colostomy formation, post-operativechemotherapy and/or radiotherapy andpossibly a reversal, all of which can extendover a considerable period of time. Thosewho have been in regular employment willbe entitled to Statutory Sick Pay. After 28weeks this will be replaced by IncapacityBenefit, which continues until a doctorconfirms fitness to return to work.

Disability Living Allowance is for peopleunder 65 who need help in looking afterthemselves and coping with a medicalcondition. There are two parts: The carecomponent is for those who need help athome with personal care i.e. washing,dressing, changing a colostomy bag etc.There are three rates, depending on howmuch care is required. The mobilitycomponent is for help required outside thehome. There are two rates depending onhow much assistance is needed withwalking and getting about.

Attendance Allowance is for people over65. It is similar to Disability LivingAllowance, but there is no mobilitycomponent. The care component has tworates: the lower for those requiringassistance during the day, the higher forthose needing twenty-four hour care.

If you think that you might be entitled tofinancial help on the grounds of disabilityor low income all you have to do is claim -there is nothing to lose and all forms arenormally returnable in a pre-paid envelopeto the government department involved. Soif in doubt, seek further advice and claim.

Anthony Gray

The rules which govern entitlement to statewelfare benefits and how much claimantsreceive are complex. This article is intendedonly as a basic outline and not acomprehensive list of what is available to all.

For further information contact:• Benefit Enquiry Line 0800 88 22 00• www.disabilitybenefits.co.uk

• www.adviceguide.org.uk(includes contact details for your localCitizens’ Advice Bureau)

• NHS Health CostsCustomer Enquiry Line 0845 850 1166www.dh.gov.uk/helpwithhealthcostsClaim form HC1 obtainable from NHShospitals, GP surgeries etc or bytelephoning 08701 555 455

Benefit

Income Support

Housing Benefit

Council Tax Benefit

Help with NHS costsi.e. Prescription chargesDental treatmentOptician’s feesTravel to hospital for NHS treatment.

Who can claim

Unemployed people on a low income

Council or private tenantson a low income

Council tax payers on a low income

People on a low income

Where to Claim

Benefits Agency

Local Council

Local Council

G.P. SurgeryDentist surgeryOpticiansNHS Hospitalor Department

Benefit

Job-seekers allowance

Statutory Sick Pay

Incapacity Benefit

Disability Living Allowance

Attendance Allowance

Who can Claim

Unemployed people with sufficient National Insurancecontributions

Employed people with a medical certificate andsufficient National Insurance contributions.

Employed people after 28 weekson Statutory Sick PayUnemployed people with sufficient National Insurance contributions

People under 65(No requirement for National Insurance contributions)

People over 65(No requirement for NationalInsurance contributions)

Where to Claim

Benefits Agency

Benefits Agency

Benefits Agency

Benefits Agency

Benefits Agency

Chart 1. Means-tested benefits These are assessed on the claimant’s income, capital and family composition.

Chart 2. Non Means-tested benefits These are assessed on a claimant’s disability and availability for work.

There are two main types of benefits available to anyone in need. The charts show the mainbenefits which are available in both categories; you have probably heard of many of these.If you think you may qualify because of either low income or disablement, seek furtheradvice from the Benefits Agency or your local council offices. Or you could contact adviceagencies i.e. The Citizens’ Advice Bureau or ring the telephone numbers given at the end ofthis article.

To qualify for a means-tested benefit your income and capital must be below a certain level.This level takes into account your needs and is based on a personal allowance for yourselfand for your family members. You will need to complete a claim form. Do not be put off bythe length or language of the form. Remember departments and agencies exist to help you.They are all prepared to offer advice and will even help you to fill in the forms.

A Colostomate’s Guide to Welfare Benefits

In itself, a colostomy is not considered a reason to qualifyfor a state benefit. However, if you are on a low income orproblems with the stoma mean that you are unable to work,then you may be able to claim. If the condition which led toa stoma persists or you have another medical problem youmay be entitled to a disability allowance. We asked AnthonyGray, who worked for twenty years in local government andwhose job included advising the public on benefits, toexplain. Anthony has been a colostomate for seven years.

Anthony two years after hiscolostomy operation. His recoverywas slower due to MRSA. Anthonysays, ‘I was glad to see 50 and mytwo sons grow up.’

Tidings 19

20 Tidings

My life has been interesting tosay the least. When I wasborn the sphincter muscle

which controls the bowel and bladderwas missing. I also had a thin porousbladder and only one kidney withlimited function. This caused a fewproblems for my parents. My firstouting, at only a few weeks old, wasto hospital, where doctors were alsopuzzled with me. There wasn’t muchknowledge regarding my problemsover sixty years ago.

I was in and out of hospital wherespecialists tried various operations tomend the leaking bladder. They did askin graft to try and patch it up. Iremember it was very painful. Theoperation worked for about two daysand I was so excited, but it was shortlived and then I was back to squareone.

With no control over my bladder I wasalways wet and had to sit on towelswhen I went out. My bowel musclesdid not work properly either and, atthe age of nine or ten, I had to haveenemas every day. I remember thedistrict nurse arriving at the houseand I used to scream when sheknocked on the door. As I was beingsick a lot and could not go to the loo,the doctors decided I needed acolostomy to save my life. At that

time, so I am told, as a twelve yearold I was the youngest person to havethe operation and survive.

I was in hospital for twelve monthsaltogether as I had to be “built up”before the operation; I was fed onchicken - a real delicacy in the 50’s.My illness was more of an adultproblem so I was on an adult ward.The staff were wonderful and tried tokeep me occupied best they could, bygiving me bandages to wrap up afterthey had been cleaned. Can youimagine that happening today? Thenurses bought me a cloth doll with ablack china head, which I calledTopsy. She went to the operatingtheatre with me, so she had scars too,although not quite as many as I had.I still have Topsy today. Back thenthere was no getting out of bed afterthe operation so to help pass the timeand to use some muscles the nursesshowed me how to write with mytoes!

When I left hospital after thecolostomy “The Powers That Be”decided it would be better for me togo to boarding school as they didn’tthink I was strong enough for the“rough and tumble” of a normalschool. So off I went to Malmesburyin Wiltshire about seventy miles frommy home town of Birmingham. I

really didn’t really want to go awayagain as I had spent most of my lifein Queen Elizabeth Hospital. I thoughtmy parents didn’t want me at home.

The journey to the school was rathertraumatic. I was only thirteen and Iremember crying all the way. Myfather was a chauffeur so was able toborrow his boss’s car to take me, mymother and elder brother on thismomentous journey. Then we arrivedat Burton Hill School for SeriouslyCrippled Girls – Yes, that really is whatit was called. However, I must admit Idid learn to love the place and thestaff who looked after about thirty-five girls. The nurses had a job withme due to the fact that there was noinformation on my problems. Acolostomy was rather rare in thosedays; no stoma equipment wasavailable, only dressings, which wereheld together with what can only bedescribed as a plastic ashtray and asort of belt. Most of the girls were inwheelchairs. There were only aboutten of us who were classed as“walkers” and we were kept busyhelping the others.

Apart from a few weeks, this was thefirst real school I had been to. Inhospital with the adults no educationwas provided. That would neverhappen today, would it? We all went

Cynthia and her brother

Cynthia Walton wrote to tell us she has had her colostomy for 55 years. It was formed when she was twelve; seven years later she had a urostomy. She calls her two stomas “the terrible twins”.

We asked her to tell us about her life...

Reader’s Story...

Tidings 21

at our own pace at Burton Hill, buthad to work as hard as our illnessallowed. Along with a few of theother girls I was confirmed at theschool by the Bishop of Bath; thatwas rather a grand occasion, especiallyas we all had new white dresses. Ijoined the Guides and my friend and Iwent to London to receive ourQueen’s Guide Badge. We also had achoir and would go to Devizes to singwith choirs from other schools. Thecompetition was of quite a highstandard and we usually came out ofthe performances very well. We allenjoyed the day out, even if we hadto work very hard practising oursinging beforehand.

The matron and her husband werevery strict, but kept a happy school.We were only allowed visitors once amonth and did not go home for theholidays, only at Christmas and in thesummer. There were lovely grounds atthe school with an allotment where Idiscovered spring onions, which Imanaged to “scrump”. Needless to saymy poor tummy was in trouble and sowas I!

I was able to stay on at school anextra year to catch up with education,so I did manage to get somecertificates. By the time I left therewere a few stoma bags around, butmade of rubber, so I smelt like aMichelin Man - not very pleasant fora young girl, a slight advantage to thedressings, but hardly Chanel No 5!

I was eighteen before I entered “THEREAL WORLD”. I was sent toPitmaston College to learn typing andshorthand, so that I could find a jobsitting down in an office. I hatedcollege: the girls were so cruel. Theyused to taunt me as I needed thetoilet so often. I suppose the“perfume” from the bags did not helpand my bladder problems were notimproving. Up until then I had onlybeen used to kind, caring people.When I was nineteen the specialistsdecided I should have a urostomyoperation. I must admit I found thisoperation very traumatic. I wasbecoming fashion conscious and wasworried about what sort of clothes Iwould be able to wear - getting mypriorities right wasn’t I? I was alsorather fed up of hospital life. It tookme a long time to recover from theextra stoma and to manage my‘terrible twins’ as they are now called.There was no help when I got home:no specialist nurses as stomas werestill something of a rarity.

The equipment had improvedsomewhat, but there was nowherenear the choice we have today. I justgot on with life the best I could. Iwas still living at home so did havemy parents “on hand” if needed,although my mother was not thenursing kind. She never had muchpatience with me, as she alwayswanted a “proper little girl” whocould be dressed up, which I nevercould. My Dad was wonderful and sowas my maternal grandmother, butshe died when I was quite young.Once I got used to the extra stoma Imanaged to keep a lot drier, even ifthe bags did come off a lot more thanthey do today.

When I was twenty-five I married thebrother of a friend who lived up theroad. We had known each other sincechildhood and he was sounderstanding and very good to me.As I could not have children myhusband agreed that we should fosterbabies who were waiting to beadopted. I loved that. There was aproblem finding a permanent homefor one of the babies, so we appliedto adopt him. Our applicationsucceeded, so the baby I had cared forfrom ten days old became my son. Heis now forty-one and has threechildren, so I have been very lucky inthat respect.

Sadly in 1974 my husband died ofcancer. I nursed him at home. We hadonly been married for ten years; itwas devastating as he was my rock.Luckily I have been very fortunatewith some wonderful friends whohave helped me out. They would takemy son on holiday or invite him tostay over when I had to go back intohospital for more operations andtreatments. I have had fifty-sixoperations up to now, but do notintend to add to that number. Therewasn’t counselling in those days sowe just got on with life as best wecould. I think coping with thedifficulties of life makes you astronger person.

I am so grateful for all the help weget now. I still do not have a stomanurse but I know I can always phoneup the company that supplies myappliances and there are so manymore associations about to help usout. The equipment today iswonderful: so much choice andinformation to help us on our way.

I count my blessings and feel luckythat I have managed to survive for solong. I try to make the most of eachday with a smile.

Cynthia Walton

Cynthia with her granddaughter, Leanne, her grandson, Ashley, and her son,Steven, who is holding her great grandson, Jamie.

Q: I am trying to find some informationon colostomy reversals: how they are doneand how long a patient can expect to haveto stay in hospital. My Mother is sixty-sevenyears old and has a temporary colostomy.The doctors have told her that after a fewmonths they will reverse it. My parents arevery apprehensive about this because wealmost lost her when she had the firstsurgery. The doctors say they will discusswhat the operation involves nearer the time.However, we would like some detailedinformation now, so they can sit easy andknow what to expect. Can you help us withthis?

A: You can meet with your local stomacare nurse to discuss the reversal operationin more detail. She will be able to explainexactly what the surgery will involve whichI am unable to do as you do not say if yourmum had an end or a loop colostomy. If shehad a loop colostomy then the surgeons willnot need to open the abdominal woundagain. However, if it is an end stoma theabdominal wound will need to be openedagain. Obviously length of stay will dependon which surgical approach is used; if theabdomen is opened then length of stay islikely to be longer. There are risks involvedwith any surgery and again the local stomacare nurse will have access to your mother’sprevious history and therefore will be ableto discuss the risks in more detail. It mayalso be possible for the stoma care nurse toprovide your mum with written informationand even a visit from a patient who hasundergone a reversal procedure.

Q: I have been a wheelchair paraplegicsince 1970 and my colostomy was formed in2003. My stoma is exceptionally wellbehaved, but I have a small parastomalhernia. As I have no sensation below mynaval and no muscle control whatsoever,everything sags and I feel I need some formof support.

My question is this: How does one knowwhether a hole to accommodate the stoma,is required or not? The support garmentmanufacturers offer to make one so the bagis worn outside the garment. Does this holenot cause the stoma to protrude and becomeprolapsed? On the other hand if there is nohole and the bag is worn underneath, dothese support garments allow the contentsof the colon to flow out into the bag?

What I want to know is what does the“average” colostomate choose? Which is thesupport garment or belt most people prefer?Which is the one most recommended by theexperts?

A: There are differing opinions withregard to the hole in abdominal supportbelts. Some patients choose not to have ahole in the support garment to start with,choosing to alter the belt themselves if theythen find there is a problem with‘pancaking’ due to the pressure from thesupport. Other patients choose to have ahole put in it immediately. Somemanufacturers of abdominal supports saythat by putting a hole in the belt theamount of support immediately around thestoma is reduced. Personally I find that mostof my patients choose not to have the holeput in when they are fitted. As for whichsupport belt is preferred this is dependenton the size of the parastomal hernia andhow much support is required. This decisionis made following a review by your localstoma care nurse.

Q: Three weeks ago I underwent aHartmann's reversal & hernia repair.Following surgery I used a self administeredpump for pain control for three days. It wasreasonably OK when lying down and with acatheter in place, but any movement wasgenuinely painful. When the pump and catheter were removed Iwas given two doses of Oramorph and was inextreme pain on moving and even when justlying down. The follow up pain relief wassoluble Paracetamol and Codeine, which didnot make any improvement but staff seemedreluctant to give me anything else.

I was discharged on the sixth day. The staffwere aware that my pain levels were stillhigh but I was assured it was "early days"and would get better. The day after mydischarge I had to contact my local surgeryfor pain relief and they supplied Tramadol, Movicol and suppositories, none ofwhich was suggested by the hospital.

Two weeks after discharge I had a follow upappointment with my consultant and wasprescribed Tramadol Hydrochloride andDiclofenac Sodium tabs. This has eased thereally raw pain. I now have a persistant dulldeep aching pain in my left hip and across tothe central spine and back passage. Thestoma/hernia area is sore with the internalstitches, which of course I expected. At theend of the day my stomach on both sides isincredibly tender, and I long for some goodsleep.

Was this experience due to lack ofpreparation and information or is it usual orjust pure bad luck? I have had two Caesariansections (the first baby was 11lb. 2oz., thesecond 9 lb.) and emergency surgery for aperforated bowel/peritonitis so would notconsider myself a delicate little flower. I amquite tough but the pain of the last threeweeks has been exceptional.

What would you advise regarding excercisesat this stage? Also any tips on general wellbeing would be greatly appreciated as I seemto be very "Tired and Emotional" right now.

Sorry to bore you with all of this, but myprevious contact with you was so helpful.

A: I am sorry you seem to haveexperienced such a lot of pain followingyour reversal and hernia repair. Some painand soreness following this type of surgerycan be expected. However, it would behoped that this can be controlled to anacceptable level with careful assessmentand monitoring of pain levels andtreatment. It will take quite a while torecover from this surgery. As you are onlythree weeks post-operative I would expectyou to have some tenderness at the site ofthe surgery but hopefully the severe paincan be controlled with appropriate painrelief. If the pain relief you are currentlyusing is not managing to control the pain itmay be worth a review from either your GPor consultant surgeon to assess if there isanything else that would be moreappropriate.

Following this sort of surgery I wouldsuggest no lifting or abdominal exercises for

22 Tidings

Dear Nurse...

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

Tidings 23

eight to twelve weeks and then to graduallyincrease the amount of lifting/exercise thatyou do. If you do a lot of lifting it may beworth a review with your stoma care nursewith regard to using an abdominal support.

Q: I have only recently received mycolostomy and am trying to learn to live with it.

My problem is leakage from the bag. Thefaeces forces the bag away from my skin andI am left with a terrible mess. Sometimes ithappens during the day and now moreregularly at night.

I always make sure that the bag is firmlyattached to my skin, no bubbles of air thatcould lift it away, and yet within a short timethe bag is lifted off by the mess coming outof the side. My stoma nurse has ensured thatthe hole is the correct size for the stoma,taught me how to ensure the skin is freefrom perspiration and oils and I make surethat using the warmth of my hand andfingers, seals the bag to my skin – and yet Istill have these distressing accidents.

I would appreciate all help and advice.

A: You do not say what your output islike. If it is quite formed but ‘sticky’ you maybe suffering from ‘pancaking’ whereby thestool does not drop into the bottom of thepouch but sits at the top. Eventually themotion will push the pouch away from theskin causing a leakage. Altering your dietcan make the stool more formed or looserallowing the motion to drop into the pouchbetter. Foods such as bread, pasta and ricecan thicken the stool and foods such ascitrus fruit, green vegetables and fruit juicewill make it looser, but it is always best toexperiment with different foodstuffs aseveryone is an individual and foods canaffect people differently. Alternatively youcould use a filter cover on the air filter toallow a cushion of air to remain in thepouch allowing the motion room to dropinto the bottom of the pouch. You couldalso try using a lubricating gel or a spongecube to prevent the ‘pancaking’. Both thesecan be obtained on prescription and detailsare available from your stoma care nurse.

Q: I have written to you before, lastsummer, about a problem I have with staplescoming up under the skin around my stoma.As you know I had a colostomy after I was

burnt from the waist down in the Kings Crossfire. I had a urostomy formed in 1992, then areconstruction in 2002 but I was left with anincisional hernia, which has been repaired anumber of times.

I had an operation in April 2005 for repair ofa hiatus hernia and fundopliction, thenanother in September 2005 for repair of anincisional hernia and re-siting of mycolostomy to the other side.

Since then my stoma is very painful and Ihave this problem with staples coming upunder my skin. I have to leave the pouch offdue to the pain. I asked my GP to refer me toanother consultant at another hospital, butthis was taking too long so I went to theemergency department. An X-ray showed upall the staples in my body - there are twenty-nine around my stoma.

They have told me that they will have to re-site my stoma again and have put me on thewaiting list. I will have to wait up to 6months. I did not want another operation as Ihave already had sixty-four since my traumain the Kings Cross fire. I am now 54 years old.What can I do to speed up this operation?These metal staples are so small and causesuch problems, why do they use them onpatients?

A: I am sorry you are traumatised byyour experiences, both from the fire and theconsequences of the surgery you have had.It may be worth speaking to the stoma carenurse or the consultant surgeon againregarding your fears and the worseningproblems with pain around the stoma. Theymay be able to help you with regard to thetiming of the surgery, especially as theremay be a clinical reason for performing thesurgery earlier. I am unsure what thesestaples would be used for and why they arecausing so much trouble as I do not haveaccess to your surgical records. Again youwould need to speak to the consultant whoperformed the surgery using these staples.He would be able to explain in detail whatthey were positioned for.

Q: I shall be interested in the article onsexual dusfunction in a future issue ofTidings. In Nov 97 at the age of seventy I hadan abdomino-perineal resection forcarcinoma of the rectum. The operation,after radio and chemotherapy, was a successand I have never had any major problems. Iuse a closed bag and in my travels all overthe western world have managed very well.

The point I would like to make is this: aftermy colostomy operation I lost all my sexualfunctions. In addition to being unable toachieve an erection I lost sexual feelingscompletely. My doctor suggested Viagra butmy wife and I decided that, at our ages, itwas not worth the trouble. We have had tenyears of living without sex and are nowadjusted to it. Was the trouble caused by thesurgeon cutting a vital nerve, and could thishave been reversed. Your comments would beappreciated.

A: Sexual dysfunction is anacknowledged potential problem followingsurgery in the pelvis such as the abdominalperineal resection you underwent. Theproblem is often due to damage to thenerves which is often unavoidable. Patientsshould be made aware that this is apotential problem post-operatively duringthe counselling prior to surgery and beoffered review post-operatively to assess thedegree of sexual dysfunction for theindividual. Viagra is just one treatmentavailable on the NHS for this problem but areview by a specialist is required to identifythe most appropriate treatment for theindividual.

Dear Nurse...

Please send your medicalquestions or any queries aboutstoma management to the

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

or e-mailcass@colostomyassociation.org.uk

We will forward them to Julie Rustand publish her answers in thenext issue of Tidings.

Dear Nurse...

It’s 7am yet again and time to getmyself ready for another day at “theoffice”. My day usually starts offmanic and generally stays that wayuntil bedtime. Still it keeps me out oftrouble!

If I’m lucky it’s a day when myhusband, Steve, who is a CommunityParamedic Officer with StaffordshireAmbulance Service, is home to helpget everyone ready, otherwise I’m onmy own! I wake our two daughters,Megan age 9 and Caitlin age 7 andget them ready for school then sortour two Staffordshire Bull Terriers,Reggie and Roni. Once everyone is fedand watered I walk the girls to schooland then return home to drive towork, hopefully arriving atapproximately 9.15am.

My first job at work is to check thediary for the day’s work whichincludes visiting all in-patients in ourbusy acute Trust during the morningand running a Nurse Led Clinic in theafternoon. Also today I need to assessthe ward work and the home visits fornext week to allocate them to theappropriate staff.

Once this is done my next job is tocomplete the work generated from abusy Consultant Led Clinic on theprevious day. We have three dedicatedcolorectal surgeons and fourdedicated urology surgeons within ourTrust so our workload can be quitelarge, with approximately two

Julie’s Day

Julie has been our stoma nurse

columnist answering Tidings readers’

questions on the “Dear Nurse” page

for over two years. Working Mum,

Julie, entered stoma care in 1990 and

became a clinical nurse specialist in

1998. She now runs a forward-looking

stoma care team that provides

comprehensive care to more than

two hundred patients a year. Back in

1999 Julie along with Val Moss (now

retired), Lee Findler SCN and myself

formed the North Staffs Ostomy

Support Group, “Outlook”, a group that works closely with the nursing

teams, successfully providing pre and post-operative “psychological” care in

the hospital and the home. We are now considered part of the “hospital

team” not only by the specialist nurses, but also by surgeons themselves.

One of the eminent surgeons referred to the support group members as

being the “True Experts”.

I asked Julie to give us a brief insight into one of her working days at the

busy Bowel Care Department at the University Hospital, North Staffordshire.

Ernie Hulme

24 Tidings

A Day in the Life of Julie Rust

Julie Rust & our Trustee, Ernie Hulme,at a meeting of Outlook the NorthStaffs Ostomy Support Group.

Tidings 25

hundred new stomas being formedeach year. We also care for patientsundergoing colorectal surgery forcancer who do not have a stoma, sothis also impacts on our caseload. Wefind the best way to support patientsis to follow them throughout theircomplete journey, starting in theConsultant Led Clinics where they aregiven their diagnosis and treatmentplan. After this appointment a homevisit from myself or another nursespecialist is arranged to discuss thediagnosis and surgery in greater detailand provide written and verbalinformation. It is often at this pointthat we involve our patient visitors, ofwhich we have a very dedicatedgroup, both with and without stomas.This offers a good support networkfor our new patients and allows themto have direct contact with the trueexperts, those patients who havealready travelled this journey.

Later I join my two specialist supportnurses on the wards to support andteach patients with newly formedstomas. This work is an importantpart of our role and includes ensuringpatients are well prepared for surgeryand are supported following surgery.We also use this time to help the wardstaff to deal with difficult stoma andwound problems and to providetraining and support for all grades ofstaff, including student nurses andmedical students.

Now it is time to grab a quicksandwich, which we eat during ourlunchtime departmental meeting,where we are able to discuss anyproblems we have encountered duringthe morning and the progress of allour patients. The aim of this is tosupport each other and to ensure thatall our patients are receiving the mostappropriate care, both in the use ofproducts and in the preparation fordischarge. We also check our answer-phone for messages which we mustanswer before we leave for the clinic.These can be from wards we do notvisit regularly or from patients whorequire support or booking into ourclinics, who are worried regardingtheir follow-up appointments withConsultants or who are waiting fortests or results. This is a veryimportant part of our role and canhelp to prevent problems occurring orworsening for patients.

Next it is on to the Nurse Led StomaCare Clinic, where we see up tosixteen patients for both routinestoma follow-up and for problems

related to their stoma. This afternoonwe have a quiet clinic with onlytwelve patients to be seen. Althoughwe never know how long we will needto spend with each patient, we try tokeep to our allocated time-slots butas you can imagine if a patient needslots of support this can sometimes beimpossible and the clinic can over-run! This afternoon is not too badwith four follow-ups, where we checkthe individual is managing theirstoma without any problems, is eatingand drinking well, has nosurgical/wound problems and is usingthe product they are happiest with. Itis here we show our assortment of allother appropriate products and ordersamples for the patients to try if theywish. If everything is okay we willnext see the patient with theconsultant surgeon or oncologist inthe Out Patient Department. However,if there are problems or concerns, wemay arrange to review the patientagain in the Nurse Led Clinic. Thereasons patients attend the clinicrange from girdle fitting forabdominal support for parastomalherniation, problems with sore skin orproduct leakage, to advise ontravel, employment or personalrelationship and general support.Some issues can be quite complicatedand need review by ourselves overseveral appointments or, if we feel itis necessary, referral to other agencies.

Finally once all the paperwork iscompleted and all jobs - from theradio-pages we have been gettingthroughout the day to solve anyproblems on the wards or from out-patients needing advice over thetelephone - are up-to-date, we areable to shut-up-shop and go home.

I may have finished my paid work butnow the unpaid part starts! Firstly ifmy husband has not already done it Ineed to fetch my children from theafter-school club and then it’s hometo feed the five thousand (or so itseems!!), walk the dogs and get myhusband off to work on a night shift.Once everyone is dispatched to wherethey need to be and the housework iscompleted, it’s finally time to sitdown for a well deserved (well I thinkso!) glass of wine!

Q. When I was little I wanted to be...I always had links with the local hospital asmy dad was an “ambulance man” and mymum worked in the local A&E department(called Casualty then!) so I always wantedto be a nurse!

Q. If I could be somebody else - I wouldbe... I don’t think I would be anyone else.I’m happy with my lot. I have a fantastichusband, two lovely girls and a job I enjoydoing as so many patients remain ‘friends’for years to come.

Q. When I have time to myself, I liketo... sit and relax with a good book.

Q. My biggest weakness is... my girls. Iwill do anything for them.

Q. My greatest strength is... myorganisation skills (at least I think so,although Steve probably says it’s“nagging”!).

Q. After a bad day at work and I amfeeling down I... go home for a cuddlefrom my husband or girls and a big sloppy“kiss” from Reggie and Roni our twoStaffordshire Bull Terriers.

Q. The place I love the most is...anywhere with my family.

Q. My proudest moment was... I havethree special moments in my life. MarryingSteve my husband and giving birth to mydaughters, Megan (9) and Caitlin (7).

Q. My favourite meal is... anythingromantic with my husband as we don’toften get time to spend together as acouple. We are both so busy with thechildren and work - we often don’t seeeach other for quality time together due toSteve’s shift pattern as a Paramedic Officer.

Q. The shop I always look in is... Next,especially the childrens’ section, as I am asucker for spending money on nice clothesfor the girls.

Q. My ideal weekend away is... campingwith the family and dogs. I find it sorelaxing away from everything - and nocleaning the house either!

Q. I use the Internet mainly for... researchfor work. I have just finished my MastersDegree so I seemed to live on the Internetrecently!

Congratulations on being awarded an MSc, Julie, from everyone at the Colostomy Association

Not a lot of peopleknow this but…

26 Tidings

I did it! I sang with the choir in Carnegie Hall

I was taken seriously ill in the middleof July last year when my bowel burstand caused severe peritonitis. On threeoccasions I was close to losing my lifewith organ failure and I ended up witha colostomy. I was not discharged fromhospital until the middle of Septemberand was, by then, in a very debilitatedstate. It was the closeness of my familyand friends and also the prospect ofgoing to New York to sing in CarnegieHall with my colleagues that gave mea target for my recovery.

I sing alto with the Billingshurst ChoralSociety; our musical director is GeorgeJones. Together with his other choralsociety, Angmering Choral, an Irishchoir and one from Kentucky we wereinvited to sing Karl Jenkins’s music, TheArmed Man, Mass for Peace. Therewere 180 members and followers thatwere to make the journey from Londonto New York. I was very apprehensiveabout the journey and how I wouldcope with my stoma and being “onstage” for over an hour.

As someone who has to walk withsticks I was concerned about check-inat the airport. However, I was luckyand received assisted passage whichmeant that I was placed in awheelchair and pushed through thequeue as a priority customer. I (andothers who were in the same position)were found seats before check-in, andthen seated in the aircraft before theother passengers.

I was concerned that my stoma mightwork during this time so I had beenvery careful with my diet and takenjelly babies to slow down the output. Iwore a drainable bag to travel andduring the flight my bag filled with airbut easing the pouch a little releasedthe air. I had no problems with the

journey with regard to using the toiletbut I was stopped by security! Themetal rod on my hand/wrist, becauseof carpal tunnel syndrome, triggeredthe security alert. The security officerwas very good, while apologising thathe had to run the security check onme. He wanted to unpack my cabinbag. I requested that this be done in aprivate room away from the eyes ofthe other passengers and he agreed.Arrival in New York presented fewproblems, as again I was fast-trackedin a wheelchair through the checks tothe luggage reclaim.

We stayed at the Grand Hyatt Hotel inNew York and though the rooms wereadequate there was no closed disposalbin in the bathroom. I had made aconscious decision to carry a numberof plastic carrier bags - so I was ableto rinse through my used bag, encloseit in a disposal bag and then wrap itup well in the extra plastic bag. I didask at reception for a bathroom bin,saying I had a colostomy. I was facedwith ‘I don’t know what you aretalking about’ and had to explain.However, the bin still did notmaterialise.

I was able to do a limited amount ofsightseeing. Out and about in NewYork, I found everyone most helpfuland considerate with my disabilitiesand disabled facilities are great.However, public toilets seemed to bevery scarce. They are mainly found inrestaurants and shopping malls. GrandCentral Station was an ideal place toeat and provided good facilities in apleasant atmosphere.

Rehearsals were held in the ballroomsof the hotel. The Martin Luther KingRemembrance day concert was inCarnegie Hall. Those of us in wheel

chairs were invited to be in the frontrow on perch stools. I needn’t haveworried about being on-stage for anhour or more. I was fine. The musicalexperience both in the practicesessions and finally the performancewas wonderful and left me with quitean adrenalin surge.

There were 250 choristers on stage andrelatives and supporters in theaudience. Karl Jenkins had come overwith us; it was to be the firstperformance of his music in America.We sang the mass in the second half ofthe concert and were given a standingovation, which felt incredible. TheMusical Director was Jonathan Griffith,a very prominent conductor inAmerica. He was wonderful and shookhands with every one of us as we leftthe stage. After the concert, together with oursupporters, we were then taken bycoach to New York harbour for a latenight cruise to the Statue of Libertyand on the way back to the hotel a hotsupper with wine was provided.

On the return flight everything wasfine - again with assisted check-in. Mybag needed changing but this was wellmanaged in the tiny cubicle. I ensuredthat the used bag was well wrapped inthe plastic bags and disposed of in thedisposal chute.

So take heart any new members of theColostomy Association who may havemisgivings about flying. It can be doneeasily.

Celia Patten

Celia Patten wrote to tell us of her trip to New York to takepart in the Martin Luther King Remembrance Day Concertat Carnegie Hall.

Tidings 27

28 Tidings

The letter from Julie in the Spring editionof Tidings was a breath of fresh air. Howinspiring it was to read about someonetaking on the challenges of life with acolostomy in such a positive way – onethat reflects the realities of her life as itreally is rather than bowing down to thepressures of others who probably havelittle understanding of what life with astoma actually entails.

I, too, had a prolapsed rectum that firstbecame apparent when I was twelve andwas finally repaired at the age of twenty-eight with a rectoplasty; two previousoperations to insert silicone bands havingfailed to remedy the problem. However, Icontinued to experience severeconstipation and nausea and five yearslater, in 1992, I had a colostomy, which Ihave to say brought a vast improvementto my quality of life for the simple reasonthat I no longer had to spend severalhours a day on the loo. However, I stillcontinued to experience nausea, vomitingand stomach pain and in 1994 I wasdiagnosed with pseudo-obstruction, acondition in which there is a failure of thepropulsion of food through the intestinedue to various abnormalities in themuscles or nerves of the intestinal wall.

For the next eleven years I continued totry to cope with the challengingsymptoms caused by food effectivelyobstructing my bowel, but by 2005 myquality of life was so poor that a decisionwas made to start feeding meintravenously. This treatment is calledparenteral nutrition and refers to nutritionthat is given directly into a main veinclose to the heart via a catheter, or a“central line”. Each patient’s nutritionalrequirements are assessed individually andin my case this meant infusing two litresof fluid over a period of approximatelyeleven hours, five nights a week, and I’mhappy to say that now I no longer have torely on eating “normal” food to remainnutritionally well, I do feel much better.

However, like Julie, I find that one of thebiggest obstacles I come up against isn’tthe intravenous feeding itself, or dealingwith my colostomy, but having to adjustto everyone else’s expectations of thesetreatments. For me, these medicalinterventions are just part of a treatmentregime for an ongoing medical condition,the effects of which I still have to dealwith every day. Parenteral nutrition hasremedied the malnutrition caused by theeffects of long term nausea and vomiting,and my colostomy has enabled my bowelto at least function in some sense of theword, but I still have to live with the sameset of symptoms on a daily basis. My gutstill does not work efficiently and neverwill, and this is a hard concept for others

to grasp, especially given the surgery Ihave undergone and the fact that I nowrely on intravenous feeding five nights aweek.

People assume that undergoing suchcomplex treatment and surgeryautomatically means that I am “cured”,and with regard to my colostomy andbowel condition in particular I amconstantly being given well-meaningadvice from others about what I should beable to achieve. The type of advice that Ifind really irritating usually comes frompeople who not only don’t have a stoma,but have never suffered from any boweldisorder in their lives, yet neverthelessthink they are experienced enough in thisfield to tell me how they would “manage”with my symptoms if they were in myposition. Such advice usually consists ofsuch staggeringly pointless tips asscheduling ‘rest periods’ during the day, or‘lying down for half an hour’ as a meansof managing gastro-intestinal symptomswhilst on holiday. As anyone with a bowelcondition knows, “taking a nap” for halfan hour will not cure the nausea, vomitingand abdominal pain caused by anobstructed gut, or any other boweldisorder.

I’m not one for naming my stoma and forme this is a good thing. It reflects the factthat I see my stoma as a normal, muchvalued, part of my body. I’ve accepted itand treat it with the same respect as Iwould those body parts I was born with –after all, I wouldn’t dream of naming mylegs or ears. However, I did find the letterin the Spring edition of Tidings from theperson who had named her stoma ‘Grace’very touching and I share her sentiments.Having spent my teens and twentiescoping with the indignities of anembarrassing bowel condition, having mycolostomy at the age of thirty-three did atlast bring some grace back into my life.

Since having my colostomy I have receiveda great deal of support from theColostomy Association and it has beenvery encouraging to read of other people’sexperiences in each edition of Tidings. Inaddition, I have also received much valuedsupport from another patient organisationcalled PINNT, a registered charity whichsupports both adults and children whorequire artificial nutrition of any kind,including parenteral nutrition (givendirectly into a vein) and enteral nutritionwhich refers to nutrition that is given viafine tubes placed in various parts of thedigestive system such as down the nose(naso-gastric), directly into the stomach(gastrostomy feeding) or directly into thesmall bowel (jejunostomy feeding). PINNTproduces literature on many aspects ofartificial nutrition and also publishes a

“Holiday Guidelines” booklet, free tomembers. This covers everything fromfinding appropriate insurance cover forpatients with medical conditions, to takingmedical supplies abroad. PINNT alsopublishes a quarterly magazine formembers and offers full support to bothpatients on artificial nutrition and theirfamilies and carers.

The combination of mycolostomy and the

intravenous feedinghave enabled me tofeel well enough toreally appreciate theeveryday things in

life and, like Julie, Idon’t need to swim the

Channel or navigate thedesert on a camel to feel that I

am getting the most out of my life. It’sbeing able to do the little things thatmatter to me. And, when it comes downto it, the little things are really the bigthings – the things that we all rememberwhen we look back over our lives: beingthere when my children came home fromschool and being well enough to just sitand talk about what their day had beenlike, studying my daughter’s universitytextbooks with her and having a livelydebate about the things that areimportant to her, having the energy tospend an afternoon “girlie” shopping withmy daughter and trying on clothes thatare far too fashionable for a forty-eightyear old – but doing it anyway.

Many people spend their whole yearputting all their efforts and hopes intoplanning for their two weeks in the sun,but I believe that the essence of a reallygood life is to make the most of thoselittle things that happen every day andcan all so easily pass us by whilst we’replanning for the “big stuff”: building thatsnowman by torchlight in the darkbecause the snow might have melted bymorning, taking a walk by the river withmy husband, reading a book on a sunnyafternoon or cold wintry evening. Itdoesn’t matter whether you’re amountaineer, a trekker or someone whoprefers to stay closer to home. At the endof the day, all that really matters is thatyou are content with what you do.

Barbara

For more information about PINNT,please write to PINNT, PO Box 3126,Christchurch, Dorset, BH23 2XS, oremail: PINNT@dial.pipex.com, ortelephone Carolyn Wheatley on 01202481625.

A Reader’s Reply...

Tidings 29

The organisers of “Breakaway Weekend” haverecently announced that some sponsored placesare available at their adventure holiday to beheld on 17th-19th August 2007 at YHA, Bryn Gwynant, Snowdonia. (See P.13)

If you are betweenthe ages of six andeighteen, have astoma and wouldlike to attend, butcannot afford thecost of theaccommodationand activitiescontact Rachel onO775 1560013who may be ableto help.

•StopPress•StopPress•StopPress••StopPress•StopPress•StopPress••StopPress•StopPress•StopPress•

SASH stoma support andparastomal hernia beltsare suitable for Colostomy,Ileostomy, Urostomy,Umbilical and waistline Insisionalhernias. The SASH stomahernia belt has beendesigned and developedby an ostomist to givesupport to a hernia thatsurrounds the stomawithout restricting normalbody movement orlimiting muscle use.

Check with your stomacare nurse that it issuitable for your type ofstoma, before using thisproduct.

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

30 Tidings

Hypnotherapy for Ostomates Readerto Reader...

Following stoma surgery, many peoplehave serious and on going problems withtheir body image. They may feelunattractive or even ashamed of theirbodies. This can have repercussions ontheir social life and personal relationships.

Hypnotherapy is an aid for anyone havingdifficulty adjusting to life with any formof stoma. Hypnotherapy can help peoplecome to terms with their new body image,how their body now looks and functionsand can repair dented self-esteem andconfidence, also turn acceptance of astoma into appreciation. For some peoplea stoma is a life-changing event for thebetter, bringing better health and abrighter future. However, for many peoplediagnosed with cancer a stoma is anunexpected life saving procedure.Hypnotherapy can be used to preparepsychologically for surgery; this in turnwould be beneficial for post-operativerecovery as the formation of a stomawould have already have been accepted bythe subconscious mind.

How does hypnosis work? The brain has aconscious, logical thinking part that weuse to make choices such as what clothesto wear, what newspaper to buy. It alsohas the unconscious part that isresponsible for the way our bodiesfunction and the way our minds work.This is the part of the mind that we targetwith hypnotherapy. By using relaxationtechniques and carefully wordedsuggestions it is possible to change howwe feel about ourselves both physicallyand psychologically. And when we feelgood about ourselves we are moreconfident and contented in all areas ofour lives; this is beneficial for ostomatesof all ages and backgrounds.

For people contemplating whether surgeryis the right way forward for them, thesubconscious mind is a useful tool and isable to help inform their decision. Usinghypnotherapy, it is possible to access thesubconscious mind and ask for guidancefrom your deeper self. The subconsciousmind is responsible for all our automaticfunctions, like regulating our breathing,balance, even blinking our eyes; all thishappens automatically because thesubconscious mind knows what our bodiesneed and when these needs should bemet.

Another well-documented benefit ofhypnosis is pain control. Usinghypnotherapy, alongside modern medicine,to control pain has many advantages.Hypnotherapy has no side effects and withtraining can be self-administered regularly.

So how does this work? First we need toask, ‘What is pain?’ Pain is a signal sentfrom damaged or inflamed nerve endingsto inform us that all is not well in aspecific area of the body – that this areaneeds our attention. Signals are sentthrough the nervous system up into thebrain where they are interpreted asdifferent types of pain i.e. sharp,throbbing or a red hot burning sensation.With careful use of hypnosis it is possibleto dull sharp pain, sooth throbbing painand cool any hot burning sensations byusing suggestions whilst in hypnosis.Another option is to visualise the pain asan image with colour, texture, even withsound and temperature and maybe aname. By changing the colour, texture etc.of this image the pain changes too,becoming a more comfortable awarenessof the sensation.

Most people can subconsciously substitutea different time to experience the pain.This can be spontaneous; you may haveheard people say something like: ‘I don’thave time for this headache right now.’You have probably done this yourself atsome time only to discover later that theheadache has dissipated. Athletes whoinjure themselves in competition oftendon’t realise they have an injury until theevent is over. These are common every dayepisodes of substituting a different timeand place to experience. As this can bedone spontaneously it is possible to learnhow to do it deliberately.

Most good hypnotherapists should be ableto help. However, I would recommend amember of the British Institute ofHypnotherapy. As a fellow ostomate I amuniquely qualified to be able to help mostpeople with a stoma.

David Joy MBIH, Master Practitioner ofHypnotherapy and registered IBS therapistwww.davejoyhypnotherapy.co.uk

The British Institute of Hypnotherapy,12Heycroft Road, Eastwood, Essex, SS9 5SWTel: 01702 524484,www.britishinstituteofhypnotherapy.orgcan provide contact details for David Joyor another hypnotherapist with a practicein your area.

Before seeking advice from ahypnotherapist, it is important to reportany new symptoms e.g. pain to yourconsultant, GP or stoma care nurse, whowill be able to arrange investigations torule out an underlying physical cause.

Dear Tidings

I am seventy-five years old and live alone ina bungalow with a small garden in Hastings.I have had a colostomy since 1980 when Inearly lost my life during the operation. Icannot have it reversed unless I am in pain,as more surgery will be risky. I had a mildstroke in 1996 and, outdoors, I walk with astick.

My interests are gardening, wildlife, travel,television and reading. I would like to meetsomeone else who has colostomy, either maleor female, for friendship, an understandingperson who knows what it’s like to live witha stoma.

Hope you can help.YoursRobert

If you would like to contactRobert write to Head Office andwe will pass on your letter.

Dear CA

I am healthy, honest, active, ex-publicschool, living alone in the North Berkscountryside since my divorce some twelveyears ago. I have three adult, marriedchildren and four granddaughters. I am aretired cereal farmer and my land is rentedto a neighbour. As a hobby I like repairingbroken or neglected articles. I also enjoytravel both on land and sea.

I would very much like to find a ladycompanion, who has no qualms about acolostomy, to possibly cruise and travel withme. We colostomists are somewhat lepers inthe social world, but two of a kind wouldunderstand and help each other to cope. Iam able to do most things as easily as I didbefore my operation, four years ago, andhave learned to live a comfortably normallife, as good and happy as everyone else ofthe same age.

Yours sincerely

Bob

If you would like to contact Bobwrite to Head Office and we willpass on your letter.

Tidings 31

32 Tidings

Support Group in the Spotlight

Mid Essex Stoma Support

On 11th October 2002 Stoma Care NurseNikki Saunders arranged a meeting atBroomfield Hospital, Chelmsford togauge the interest in forming a localsupport group for all ostomates withinthe Mid-Essex Health Authority. Sixty-three people attended - thirty-sevenostomates and twenty-six partners andfriends.

And so the Mid Essex Stoma SupportGroup was born.

A committee of four was electedcomprising Chair, Secretary, Treasurerand Nurse Representative and the Rulesand Constitution formulated. Thegroup’s aims were agreed:• give patients/ostomates theopportunity to meet and talk informallywith others who have a stoma • get together on a social basis atmeetings and other specially arrangedevents• keep everyone updated regarding thelatest ostomy products and services.

Almost five years on, we have 120ostomate members. Ostomates’ partnersand friends are important to us and wehave therefore welcomed them asmembers too, swelling our numbers by afurther 75 to an overall total of 195.

A typical edition of our popularquarterly newsletter, The Messenger, willinclude a review of the most recent, andnews of forthcoming, social events.There will also be a page or two devotedto Hints ‘n Tips, an update regardingmembership numbers, members’ newsand letters and invariably a competition.Ostomy manufacturers may place a smalladvert in return for a donation to thegroup’s funds. Photographs are animportant aspect of the newsletter,giving it a much more personalperspective for a small and local group.

Formal meetings take place in Marchwith our AGM, and September when aguest speaker is invited to talk about asubject we feel will hold members’interest. Our social calendar focuses

much more on events which providepeople with the opportunity to chat.Evening meals and get-togethers havebeen the norm with coach trips in thepast to Rochester, Windsor, HamptonCourt, Southwold, Duxford, Eastbourneand Leeds Castle.

Our 2007 programme is typical of thelast four years, with an event roughlyevery six weeks. We held a PloughmansSupper in February, AGM in March andenjoyed a trip to Rochester in May. OnJune 23rd we have a coach trip toCanterbury and on August 4th a trip toHastings; the destination of our trip onSeptember 15th is yet to be determinedso it could even be a mystery tour!Moving into the autumn, we aredelighted to celebrate our 5thAnniversary on Sunday 14th Octoberwith a special buffet lunch, with ourAnnual Quiz Night on November 23rdand Annual Christmas Dinner on 14thDecember.

Group funds are usually retained for thebenefit of members. However, in 2006and following a year of particulargenerosity of members, their familiesand friends we were delighted to donate£250 to each of two BroomfieldHospital appeals – the CapsuleEndoscopy Appeal and Urology ResearchFund.

Members say they enjoy our group andit’s special to them because it’s smalland intimate, creating the rightenvironment for members to see andchat discreetly with others regularlyabout anything and everything – stoma-related or otherwise. They say theydon’t want that to change – so it won’t!

For further information about the MidEssex Stoma Support Group contact Clive Blanchard 01245 468750 orclive.blanchard1@btinternet.com

Put your group in the Spotlight.Write and tell us about it andwe will do our best to includeyour article and anyphotographs.

There’s always time for a cup of teaand a chat.

Members enjoying a buffet lunch onthe day trip to Rochester.

The Annual Christmas dinner.

News of local stoma support groups

“The Monday Pop In Group” meetsevery Monday from 2pm until3.45pm at Martin’s HeronCommunity Centre (in Tesco carpark), Bracknell, Berkshire. Forfurther information contact JackieDudley 01344 426652

“Bags of Support” meets on the lastSaturday of the month from 10 amuntil 12 noon in the Ante NatalDepartment at Frimley Park Hospital,Portsmouth Road, Frimley, Surrey.The next meeting will be on July28th. For further informationcontact Beryl Goddard 01252-835364

The next meetings of The SwanseaOstomy Self Help Group will be onMonday 9th July and Monday 10thSeptember. Both meetings will beheld at St Pauls Parish Centre, De LaBeche Road, Sketty from 2pm until4pm. For further informationcontact Glynis Jenkins 01792418245

In the Newcastle area there are twosupport groups. They meet:every week on a Friday from 10amuntil 12noon at Arthurs Hill Clinic,Douglas Terrace, Newcastle-Upon-Tyne.every other month from 10am-12noon in the Bewick SeminarRoom, Leazes Wing, at the RoyalVictoria Infirmary, Newcastle-Upon-Tyne. The next meeting will be on25th July 2007.

If you contact us before 20thAugust we will publish the dateand venue of your next StomaSupport Group meeting.

For a complete list of supportgroups visit our website atwww.colostomyassociation.org.uk

Tidings 33

Department of HealthThe closing date for responses to threeconsultations, about the provision ofstoma care appliances was the 2nd April.The Colostomy Association submittedresponses along with the other patientorganisations, manufacturing and supplycompanies and various nursingorganisations. A large number of responseswere also submitted by individualsalthough it has not yet been possible toidentify exact numbers. The original planwas to have a summary of these responsesavailable on the Department of Health(DoH) website by the end of April.

On 23rd May The Department of Healthmade the following announcement.

“The volume and complexity of theresponses are such that the Departmenthas decided that it needs more time toanalyse the information provided.Consequently, no changes will beimplemented in July 2007 as previouslyproposed. The needs of patients areparamount and the Department iscommitted to ensuring that their care ismaintained and, where appropriate,

improved. The Department seeks to ensurethat the NHS is receiving value for moneyand want to make sure that the servicesprovided by all dispensing contractors areto the same standard no matter where inEngland a user of these appliances maylive. At this stage, I cannot tell you whenwe will have completed the overall review,but I do not anticipate that it will bebefore the end of the year. Please beassured that we will keep you updated asand when necessary.”

To keep abreast of developments visitthe ‘News’ section of our website.www.colostomyassociation.org.uk

Scottish ExecutiveDue to the recent elections in Scotland,the regular meetings with the ScottishExecutive to discuss the impact of recentchanges in stoma care have been put onhold until September.

To enable us to provide feedback to theScottish Executive about the service thatour members have received since thechanges in 2006, we included a briefquestionnaire for our Scottish members in

the Spring issue of Tidings. We received inexcess of 230 responses and it waspleasing to see the high ‘satisfaction’scores that resulted. In summary the keyresults were :-

We asked our members to rate the servicethat they received on a scale of 1 to 5with a score of 1 being very poor and ascore of 5 being very good.

91% rated the service provided as good or very good97% rated the delivery service as good or very good98% rated the packaging as good or very good97% rated the overall ‘end to end’ serviceas good or very good

May I thank all our members who tookthe time to complete and return thequestionnaire. We will be discussing thesefindings at our next meeting with theScottish Executive.

Ray GoddardManaging Trustee

Department of Health& Scottish Executive Updates

� Dear Editor

Many thanks for sending me the magazineon a regular basis. It is so interesting andinformative. I have yet to take my couragein both hands and say ‘Yes’ to acolostomy. I keep wondering if I can justgo on coping without one. Then Iconsider the quality of my life andemotional state when accidents happen,the constant pain and discomfort, whichresult in my being tired and irritable witheveryone.

I am sixty-seven, have chronic IBS,diverticular disease (two recent acutebouts resulted in hospitalisation) and adamaged anal sphincter due to a ratherlarge baby and mismanagement by thedoctor who delivered him by forceps in1964. Together all three conspire towardsme having a colostomy.

Reading Peggy Farley’s article in Issue 5brought it all home to me when she wroteabout her life before the operation andher need to know where all the loos were.

I have a good friend who has had acolostomy for some years and is avolunteer in my area. She has promised to‘hold my hand’ every step of the way andI cannot tell you how much this means tome.

Yours sincerely,E.P.

� To the Editorial Team

I had a colostomy operation eighteenmonths ago. On some days I considerhaving to change the bags a completenuisance and on others simply an extrachore, like cleaning your teeth!

Shortly a decision will have to be made asto whether I want a reversal. My surgeonis non-committal, saying that the decisionis mine - it seems that the operation is apractical proposal.

I wondered whether the team couldinclude some information about reversalsin Tidings or could ask readers about thepros and cons of having this secondoperation.

Your help would be greatly appreciated.

Yours Faithfully P. K.

� Dear Editor

In October last year I was rushed tohospital desperately ill with peritonitis andwas very shocked to find I needed acolostomy operation. My recovery waspainfully slow, not helped by the fact thatI was discharged from hospital with araging infection, which I had to cope withon my own. The antibiotics and painkillers caused constant sickness whichmade eating and drinking difficult and myweight dropped by two stone.

I am now mostly very well, my weight hasstabilised nicely and my only problem isan occasionally overactive stoma if I eattoo many vegetables.

I have been told I am one of the luckyones who can have a reversal operationand I was delighted by that. However, now

I know it will probably be in three or fourmonths time, I am getting very anxious asto whether I am doing the right thing. Ihave heard there is a fairly high failurerate and that recovery is more difficult andtraumatic than the original colostomyoperation. Could you please tell me if thisis true and how past colostomates whohave had this operation now feel abouttheir experiences.

Yours Faithfully R.C.

We were already planning to include afeature on reversal in an issue of Tidingslater this year. In view of the number ofletters we have received recently on thistopic we are now hoping that we willable to get a medical professional towrite an article for the Autumn issue.We know that for some people reversalsare very successful, others may haveproblems following the reconnection oftheir bowel and the closure of theirstoma, so we welcome letters and storiesfrom readers about their experience. Ed.

� Dear Editor

When Tidings comes through my letterbox I can’t wait to read it and everythingcomes to a full stop while I do just that.

Although I have a colostomy I realise thatI don’t have the problems that some ofyour other readers have. I’m a bit new tothe “game”- just three years.

This edition of Tidings was an enormoushelp to me. The first article that boostedmy confidence was by Iris when she says,‘she is nervous travelling too far from thecomfort zone.’ Because of a badhappening after my operation that’s meand to know that someone else feels thesame gave me such a buzz.

My family try to persuade me to have bigholidays: go abroad, do a cruise etc. etc.The article from Julie gave me peace ofmind. I too don’t need to be “out andabout”. I have my senior citizens meetingonce a week, mothers union at church, aweekly lunch at the church hall, my trip tothe library and my cross stitch.

Can’t begin to tell you how these twoarticles have helped me and stopped methinking that it’s only me that doesn’twant to “fly my kite”.

RegardsJean (aged 80)

34 Tidings

Readers’ Writes

Tidings 35

� Dear Tidings

I would like to share with Tidings readersmy experience as to how I found myselfwith a stoma which has turned my lifetotally upside down.

Please do not misunderstand me, manyostomy patients are so thankful that thestoma has saved their lives, and yes,indeed, such is my case. I would certainlynot be alive today if this form of surgeryhad not been available to me, but let meexplain my worries and problem.

I went into hospital approximately twoyears ago to have a gall bladder operationonly to wake up in intensive care with thesurgeon leaning over me to say thatduring the operation he had perforatedmy bowel. At this point I imagined that allhad been done to repair the damage, butfour bowel operations later I was indanger of losing my life.

To cut a long story short, five monthslater I got home from hospital, with a TPNmachine as my main source of nutritionand then a light diet to follow - all this,plus a fistula in the middle of my tummy.For many weeks I had daily leakages,causing weakness, soreness, despair andanxiety - my life was certainly on hold forthat time. BUT the light at the end of thisdaily and nightly trauma was the fact thatwithin a certain number of months – tenin fact - the fistula was going to bereversed and all would be well with meboth physically and mentally.

August 2006 came around and I went intohospital with great optimism, in factlooked forward to the event. Going intohospital again for a major operation wasjust not a worry for me. My life would goback to what it was like before the fatefuloperation in June the previous year. So Ihad no fears, if anything I was elated.

My elation was short lived. After anoperation which lasted many hours I wokeup to find the surgeon beside my bedtelling me I had a colostomy - one whichcould not be reversed. Apparently duringthe operation they found that my bowel,both large and small, was in such poorcondition that he had had no choice butto leave me with a stoma. This was thefirst time this excellent surgeon hadoperated on me. As a result of the fourprevious operations, I had been left withonly 70 to 80 cms. of small intestine.Some of my large bowel also had to beremoved; this colostomy was the onlyanswer.

Suffice to say I took this unexpectedcolostomy very badly and, since then, Ihave been unable to come to terms withthe stoma. It seems outside my mentalcontrol to take and accept it and to knowit will be with me forever leaves me totallybereft. I have lost my confidence, I feelunclean, seem to have no control over anyaction the stoma decides to take. Even tenmonths down the line I feel my life istotally at the mercy of this 'thing'. I havebeen told by many that I should try to bemore positive; this stoma saved my life. Ihear all the arguments and KNOW my lifehas been saved by the wonderful work ofmy surgeon, but I cannot move away fromthe fact my whole world has turnedupside down and the quality is such I seemyself without motivation. I have lostalmost two stone in weight, my diet is solimited and so bland. Should I trysomething new, I suffer for daysafterwards with a gurgling bowel, windand lots of diarrhoea, plus many“accidents” with my pouch beingincapable of handling the volume.

So, I am writing to find out if othercolostomates feel the same as I do. I maybe alone with such selfish thoughts, I justdon't know, but this I do know, mydepression is getting deeper and it nowseems that all the tablets in the world willnot take away this nightmare. Am I beingthoughtless and thankless to all themedical profession who have helped me inthe past - possibly - then again they donot have to live with a stoma. SometimesI think that perhaps in this particular fieldof medicine unless the experts experiencelife with a stoma they really have no ideathe degree of inhibition it entails.

I would welcome any feed-back from thechronicle of my medical experiences, be itargumentative or otherwise. I just wouldlike to think I am not alone with all thesefeelings, that someone, somewhere,understands what I am going through.Help is what I need more thancondemnation.

Kindest regards Evelyn

Editors Note. Most colostomates will have their smallbowel, which is normally between sixand a half and seven metres long, stillintact. Some of the problems Evelyn isexperiencing will not be common to themajority of colostomates as they arelikely to be due to the large amount ofsmall bowel which has been removed.

From Ed...

Dear All...

Thank you for yourletters and e-mails.Please keep themcoming and we will doour best to print them.Editing may berequired for reasons of clarity or space. In the interests ofconfidentiality we willpublish only yourinitials, not your fullname, unless you giveus permission to do so.Ed.

Donations

A reader sent us a cheque for £645.51and this letter:

On Saturday the 24th March I gave a talkon ‘Silverdale in Old Photographs’ in ourvillage hall. This was a fundraisingfunction with receipts split equallybetween yourselves and our local hospice.Your association was chosen inrecognition of the help you have given to my wife who is a colostomate.Many thanksR.I.

A colostomate donated the prize moneyhe won in a bowls competition and sentus this letter:

Last year I had two operations for bowelcancer, the first to form my stoma in Julyand the second in November to removemy lower bowel, rectum and anus. Myhobby/sport is Crown Green Bowling, and

although I had to miss last season, I’vejust started playing again. I did manage toenter a bowls competition, the day beforemy operation in November 2006 and waslucky enough to win the tournament plusa trophy and £20 prize money and hopethis small donation helps your finances alittle.

Yours sincerelyR.T.

Legacies

Following our mini article about Legacies,in the Winter 2006 edition of Tidings, inMarch we were very pleased to receive aletter enclosing a cheque for £49100.50.This represented one third of the estate ofone of our former members, ThomasButler, who sadly died in June 2005.Although Mr Butler had not specificallyleft money to the association in his will,he had requested that his estate be sharedbetween charities to be nominated at the

solicitor’s discretion. The company decidedto share the estate between the CinnamonTrust, The Swindon Carers Centre andourselves in recognition of the supportthat all three charities had provided for Mr Butler in his later life. This welcome“windfall” has meant that we have beenable to start work on updating ourliterature much earlier than we hadplanned. We would like to thank ThringTownsend Solicitors in this respect.We do also, from time to time, receiveletters in the office from funeral directorswhere people have requested thatdonations are made to ourselves ratherthan paying for flowers for a funeral.These injections of money, both big andsmall, really make a difference to theColostomy Association and enable us tocontinue to provide advice and support to Colostomates countrywide.

Ray GoddardManaging Trustee

Fundraising...

Tidings 37

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)

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

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:

38 Tidings

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:

Tidings 39

Upfront • News • Events • FundraisersHelpfulGroups & Organisations

Open Days

The Colorectal Specialist Nurses atNew Cross Hospital are holding anopen day. Date: Friday 17th August 2007.Time: 10am -12noon & 1-3pm. Venue: Jack Hayward Suite, MolineuxStadium, Wolverhampton.Come along and meet stoma productmanufacturers, delivery companies,local and national support groups andyour specialist nurses. For more information contactCatherine, Alison or Nicky 01902694084

The North Glasgow Stoma CareDepartments are arranging an open day.Date: Friday 10th August 2007Time: 11am – 2.30pmVenue: Firhill Stadium(Partick Thistle Football Ground),80 Firhill Road, Glasgow G20 7AL

The Stoma Care Nurses from all thehospitals in the Newcastle-Upon-Tynearea are holding their annual openday.Date: 18th July 2007Time: 10am until 3pmVenue: Brancpeth Suite,St James Park Football Stadium,Newcastle-Upon-Tyne.

Support Group List Update...We are updating our list of localsupport groups for 2007.Please let us know the details of where and when your group meet and telephone contact numbers bycontacting head office preferably by e-mail gill.herbert@colostomyassociation.org.uk

We will be publishing a complete listof local groups on our website.

Mr. Smith asks our readers... Mr. Smith from Hull has written to ask if any of our readers havepurchased a Braun Irrimatic electricirrigation pump and found that it’snot for them. If so, would they beinterested in selling it, in conjunctionwith a donation to Tidings? He hashad one for about four years, finds itvery useful and cannot consider lifewithout it. However, as it is notavailable on prescription, to replace itwould be expensive.Mr. Smith can be contacted on 01482 641855

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, poem, article, letter or any other item you would like to be included, please address them to the Editor and send them by email orpost to the email or postal address given below and we will do our best toinclude them! We look forward to hearing from you!

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

For more information visit...www.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

• IBS Network(Irritable bowel syndrome)Tel: 0114 272 3253www.ibsnetwork.org.uk

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

• National Key Scheme - Colostomates areentitled to a key which will open 7,000locked toilets around the UK. Some localcouncils will provide this key free or for asmall charge.

Alternatively write to:RADAR12 City Forum250 City RoadLondon EC1V 8AF

Include a statement confirming you have a colostomy/disability. Enclose acheque for £3.50 for the key and a further£10.25 if you also require the guide whichlists all the NKS toilets throughout the UK.

Keys and Guides can also be purchased online at: www radar-shop.org.uk or byphone 020 7250 3222.

Dedicated to Colostomates and their Carers