Stories

Someone’s Looking After Me

Karen Hawkins’ journey from purgatory to pouch took three years and at times the going was extraordinarily tough. She can hardly believe her luck now that she has a healthy pouch and a baby too.

How life can change. Three years ago I had been struggling with ulcerative colitis for six years. I never felt well and I used all the strength I had to work. I had not believed for sometime that I would live to be thirty. This was something I would occasionally mention when I was particularly low and it did not help my husband one bit.

Surgery was suggested whenever I had a short remission, but I told myself, if I could have a remission, I should get better.

A holiday of a lifetime was planned, Jeff thought the rest and relaxation would be of benefit. We flew to Barbados. A beautiful country, but all I could think of was the flight, how would I manage? A couple of weeks before we were to leave the colitis flared up with a vengeance. Up went the steroids and the whole regime began again. Whether it was the pressure of the holiday or just bad luck, this time I could not kick the colitis to touch.

I had been in this situation four years before. The theatre was booked for my ileostomy. My colon was swelling out of control, I was X-rayed every day. Someone was looking after me, the day they were to operate I had a reprieve. The doctors could see an improvement.

It was considered that the holiday would let me rest and I might improve. I was to fly. I don’t remember much of Barbados except the bathroom and bedroom and the recurring nightmare that the ‘witch doctors’ would get me. I could not eat or drink, I was dehydrating fast in the humidity. I was distressed that my husband was having such a poor holiday that should have been such fun. I did not think I would get home. How I wanted to embrace the NHS.

Laying in the hotel bed I knew I could fight no longer. The diseased rat inside me had won: it had to go. I would have to have an ileostomy. It had previously been discussed on many occasions that I might like to have pouch surgery. A fine idea in theory, but what if it went wrong? What if I could not cope? What if I were incontinent? Well I was worse than incontinent now and I had blown it. There was no way I would get elective surgery now, I knew I was an emergency. I was taking 65 mg of prednisolone; it was 55 mg before I left home, but everything was leaving me so fast I just wanted some of the steroids to get me home.

The flight home lasted a gruelling 10 hours with a change at Tobago. My memory of the whole journey is a blur. I just gritted my teeth and closed my eyes. Please God get me home.

We returned Sunday afternoon. I was so exhausted. First thing Monday morning I was calling my consultant. ‘I am so sorry, you’re right: I need the operation’. They knew I must be really bad to ask for surgery. I was admitted that day and put on intravenous steroids and saline drips.

My skin was blistered, not from the sun, but from the high dose of steroids I had been taking. I was too unwell to have an operation. Not only the NHS but someone else was looking after me.
For the next two weeks the physicians cared for me, getting me strong enough for surgery. I needed nourishment to repair, I had not eaten for two weeks. I was transferred to St Mark’s. I was sure the surgeons would turn me down for any elective surgery as I had let myself deteriorate so badly. They held no promises. I had to have a colectomy, that was in no doubt, but what they could do, they could not say until they got in there. With all things considered like the high doses of steroids, my poor condition, who could say? I woke from the surgery. I don’t care, I’m still here. What did they do?
They had made me an ileo-anal pouch in one go. My God, I’m going to have to look after this, someone’s looking after me.

I made my recovery very carefully and strategically, careful consideration was made about everything I did. This chance was not going to be taken away from me. I did not want to crumble, so I took it easy.
I did not want the pouch not to work, so as hard as it was after so long, and as scary as it was, I began to drink when allowed, and gave myself very simple foods to start.

Within a few months I was swimming 60 lengths a day in an effort to build up my strength. I noticed I had a life already. The pain of the surgery was negligible in comparison to the colitis.

I was well, I was cured. I wish I had done it sooner. In September 1996 Jeff and I had our very first child, a precious baby daughter, Ellie. We never thought we could be this lucky, we were told for so many years I was just too ill to consider children. If I had carried a child full term, would I have been well enough to look after it?

The fact was that I was so well during my pregnancy that my friends and neighbours did not know I was pregnant, I just got on with life. I appeared so well. When the baby was born – by caesarean – I was asked ‘whose baby?’. When I said she was mine, neighbours said, ‘But I saw you working the other day, I saw you down the road and thought you looked so well’. I am now 32 years old, I had just one operation. I am well and we have our family that I can care for. Someone is looking after me.

When Rita Went Travelling

Sandy Hyams has some good advice for those whose attitude is “have pouch, will travel”.

However many times I travel abroad, I still get a kick out of it. I love the atmosphere at airports and the experience of flying. I think it must be in my blood; my father was in the RAF when I was born. So when I had to cope with an ileostomy for a year, I vowed it would not spoil my holiday plans. And it didn’t. With a brand new pouch for a travelling companion, I didn’t foresee any problems.

I have christened my pouch Rita Reservoir. My ileostomy was known as Stromboli Stoma because he was always erupting. So it only seemed right to give my pouch a name, too. And because my system had to adjust and my dietary habits be re-educated, Rita was born.

My husband Eddie and I had enjoyed a few days in the sun over the Christmas period, which passed, unbelievably, with no complications. The flight was short and the hotel a high standard (that is, first-rate hygiene in the kitchens). I was extremely careful what I ate and drank, perhaps erring on the conservative side. I didn’t want to upset Rita at this early stage of our relationship.

So when we were preparing for an extended trip earlier this year, island-hopping in the Canaries, I was confident that nothing could go wrong. Rita was six months old and I thought she had cleared all the hurdles by then. Looking back, I realise how over-optimistic and complacent I was.

The first inkling I had that perhaps things would not go as smoothly as I hoped was when I had three “accidents” during the night in the space of a week just prior to leaving. My surgeon put it down to stress and anxiety and advised me to increase my dosage of medication. Until then I was taking six Loperamide and four Codeine Phosphate daily – which gave me a gratifying average of five or six trips to the loo each 24 hours.

I am one of those people who make lists of lists. Not that I’m a worrier, just conscientious. Packing and organising my life, especially for a trip of nearly six weeks, always throws me into a state of panic, not to mention paranoia and confusion. It was no wonder I was under stress.

As I am still prone to leakage I had to find room in my case for bulky items like sanitary towels. I never thought I would be wearing them again! I also took a few Incopads to protect the mattress – extra reassurance in case of humiliating accidents in strange beds. (Sleeping on top of a towel is a good substitute if you have this problem.) But I carried all medication in my hand luggage. To lose a suitcase containing all my “stoppers” when I don’t know whether I can get to a chemist doesn’t bear thinking about! I had also taken the precaution of getting a prescription for Metronidazole should pouchitis strike. (Thankfully not needed!) Another useful remedy to pack is an oral rehydration product such as Dioralyte that quickly replaces lost body salts if you get diarrhoea.

I always keep an emergency kit with me, tucked into my handbag. (I realise this could present difficulties for male pouch people!) There’s a slimline ST, sachets of disposable cleansing tissues and a tiny plastic box which I’ve filled with the soothing cream I use. Away from the comforts of home – or hotel – I have found the kit indispensable, especially if I’m out for a meal.

As we pouch (and ileostomists) need to drink plenty of liquid at all times, a small plastic bottle of water goes with me on long car journeys. This also means I can take my tablets on time wherever I am. From where we live out in the sticks in Norfolk, getting to Heathrow or Gatwick can be a three- or four-hour drive, and it is often not convenient or possible to find somewhere to stop for refreshments.

At least we had pre-booked seats near to the loo (just in case) on all our flights. The longest leg was the first one, to Las Palmas on Gran Canaria. I must admit I had a couple of glasses of wine with my meal, which probably accounted for “using the facilities” three times during the journey! If you advise the flight crew of your predicament and that you’re likely to take longer than the average person (especially if you have to wash and cream yourself), I have found them all sympathetic and willing to help.

Am I just unlucky or have other people come across the “knock on the door” syndrome? This happened to me not only on aircraft but in hotels, restaurants and public conveniences too. When I finally emerged, I would just apologise and explain I had a medical problem. Most people were understanding. I also get embarrassed by what I call the noise factor. Sometimes it’s more explosive than others – but there isn’t much you can do about it. Sing loudly? Have a phoney coughing fit? Continually flush the loo?

I don’t know if it was the fact that I was eating less cautiously, drinking more coffee or having wine every day – or a combination of all three – that took my daily count up to seven, eight or even nine. I decided to relax and hope it would improve. In fact, it didn’t settle down to six or under until we were back home a while.

Something I have learnt, to my cost, is that red wine makes my output extremely watery. However, one tip that I picked up during the ileostomy days works equally well for pouch people. I just chew a few marshmallows which almost immediately thickens up and slows down your output. I always take a bag of these sweets for just such occasions.

Another thing to remember in hotter climates is to drink plenty of liquids (and I don’t mean wine or beer!) to stop you dehydrating. Too many sweet, fizzy drinks are not a good idea either, so I consume vast quantities of still bottled water.
The extra visits to the loo were more of an inconvenience than anything else. It meant we daren’t chance a long hike through the spectacular scenery of La Gomera, one of the smallest and least spoilt of the Canary Islands. We had to plan our days around the times I was likely to be taken short so that I was in reach of a clean loo. And it meant we couldn’t watch the Holy Week processions in Seville where we stayed a few days to break our journey on the way home. Imagine a football crowd, treble it, and think of finding a toilet on the streets of the city!

However, I would not let any of it mar my enjoyment. When in Spain, we do as the Spaniards do and eat late in the evening – at 9.30 or 10 o’clock. I worried needlessly that it would cause problems getting up in the night. In fact, dining later seemed to have the opposite effect and I was able to sleep through and often didn’t need to empty my pouch until 10 or 11 the following morning.

One thing I was able to do that I never dreamt would happen again: I wore a bikini for sunbathing! I have heard of women who are too embarrassed to show their war wounds, particularly if they have “tram lines” down their middle. Fortunately my surgeon had followed the same cut for the second operation and I was left with a neat furrow and what now looks like an old-time vaccination mark where the stoma was. Maybe I’m a good healer but, with gradual exposure to the sun, the scars have grown fainter. I would not advise this for people who don’t tan easily, though. After all, it is new skin that is growing.

I have compiled my own list of Do’s and Don’ts when travelling abroad, most of which are just good common sense:

• DO take sufficient supplies of medication and carry them in your hand luggage
• DON’T drink tap water or washed salads (unless you know it’s safe)
• DON’T put ice cubes in your drinks (ditto)
• DO peel fruit before eating
• DON’T experiment with exotic new foods on holiday – you don’t want a tummy upset
• DO drink more liquids than usual in hot climates to stop dehydration
• DO have fun – after all you deserve it

One of the main differences between having an ileostomy bag and an internal pouch is that you can nearly always calculate when you will need to empty a bag and plan accordingly. With a pouch, in my limited experience, you never know when one might come. “They” tell me things will improve, even up to five years after the operation. I hope “they” are right. But there is no doubt whatever – Rita is going to be a very well-travelled reservoir.

Stuck in Paris with nowhere to go – The…

Brian Gaherty happened to mention to one of his fellow Red Lion members that while on holiday in Paris a couple of months ago he developed an alter ego. This was a mistake because he was ordered to spill the beans in an article for Roar!

One thing about suffering from any sort of bowel disease is that you tend to lose all sense of shyness in telling others about problems “down there”, but in Paris I was to take this one stage further.

There is a lot of talk about equality, but in Paris, ladies, this just isn’t true. I know, because in the toilets of those famous bars and cafes you get the proper pedestal jobs while we men are often faced with the simple hole in the ground.

For those of you that have never seen one, how can I describe them. Well for starters imagine seeing a hole in the ground the size of a dinner plate with the imprints of a pair of size 20 feet facing you – that’s an old fashioned French toilet.

Or let me put it another way: it rather looks like someone has done a midnight flit with the toilet and I half expect the police to burst in to take plaster-casts of the footprints left behind.

In the days pre pouch I would use them with the best of them, crouched over the whole with my feet lost in those footprints, tense with the anticipation of hearing the plaintive cry of the last intrepid person to use it welling up from below.

Out I would walk to the sound of squelching feet from the footwear sodden by the tidal wave that results from the flush, back into the bar to listen to the French saying “There goes another Englishman who fell for the old ‘let him use the old hole in the ground rather than that new toilet you installed for us’ ploy…”

Happy days – but that was before I developed a scatter-gun approach to pebble dashing the porcelain and so I have succumbed to my alter ego, who I would suspect the Sun to term “loony uses Ladies Loos”.
Of course, this being France, it is not as big a deal as sneaking into the Ladies in the UK. Often you find that the ladies and gents share the same entrance way, usually with the men’s urinal in the foyer next to the wash basin.

My favourite bar at least separates the urinal with a pair of saloon doors so that you can throw in an entrance fit for the climax to High Noon, and it is handy being able to continue your conversation without any interruptions for your call of nature.

So, back to my last visit to Paris, and after several visits to prospective bars for a drink and bite to eat, only to leave after a whispered “it’s a hole” and having given up on finding a bar where the loo-nappers had not preceded me, I gave in to my alter ego and sidled into the Ladies for the first time and never looked back.
I haven’t seen any reports in the local press yet about a woman being shocked to find a man coming out of their loo but there’s time yet. In the meantime does anyone know the French for “I can explain officer”?

Three Ops and a Baby

Jo Driver found that ulcerative colitis was an  unexpected precursor to motherhood.

I was ten weeks’ pregnant when I had my first – and last – attack of colitis. Not content with having the usual morning sickness, indigestion, backache etc, I decided to be more dramatic!

However, having the colitis and the subsequent sub-total colectomy and ileostomy (at 12 weeks’ pregnant!) certainly prepared me for motherhood. Getting up numerous times in the night to go to the toilet was good training for the sleepless nights to come. Emptying my bag made changing nappies seem like child’s play.
There were other advantages, too. Of course, I had no piles or constipation to worry about. Plus I avoided the condescending pats on the stomach, because people were too afraid to touch something embarrassing! And no messy “accidents” at the birth, no worry afterwards about straining and bursting my stitches (mothers will know what I’m talking about here). I was also complimented on how clean my stitches were – strange, that!

Of course, there were some disadvantages: having to wear a garish, patterned pink, gold and green maternity swimming costume to “hide” my bag; having to have an indecently long stoma so that I could see it over my bump (I felt like a hermaphrodite!); best of all was having a bowel obstruction at 7 months’ pregnant , and being told I was in premature labour! I have to say, labour was less painful. Still, they gave me lots of entonox for the pain – highly recommended, or should I say a recommended high?! Obstetricians, midwives, delivery suite, scans – I don’t know – all that fuss for baby muesli….. Premature labour, my foot.
Anyway, back to my attack of colitis at ten weeks’ pregnant. To avoid puncturing my colon, it was decided after two weeks that I should have the operation. I christened my stoma George. The nurses were pleased at his arrival – they were all starting to get severe RSI from writing details on my stool chart.

George was very well behaved, unlike the stoma I had after my next op, the temporary loop ileostomy and formation of my pouch. I called him George II, although I think George III would have been more appropriate, as he was completely mad.

He would have outbursts in public – he didn’t care where: backs of taxis, barbecues, friends’ sofas, an Indian restaurant. That last one was the best – I had already used up my spare bag and I was miles from home. I decided that to avoid needing a skin graft, I’d better get to the nearest A&E (which, in my case, stands for Accidents and Effluence). Of course, I wasn’t really a priority on a busy Saturday night and resorted to sitting on a pile of magazines to soak up my “homemade curry” (I sat on a pile of Hello! magazines, on the grounds that what was coming out of my stoma would blend in nicely…).

Eventually, after a few hours (ouch!), I was taken to a room and shown a range of bags. I’d pull the curtain and try one on – no good, next please and what about shoes to match? They were all colostomy bags, but better than nothing. My poor husband had to drive from Enfield to Penge in the middle of the night, stopping off at shops on the way for bottles of water – he needed them to dilute his alcohol content, because he hadn’t planned on driving, and I don’t need to tell you what I needed them for. Poor George, it wasn’t his fault – he was just a funny shape and very close to my skin. And of course, it was all worth it in the end. But I must admit, I started making so many deposits, I thought I’d been reincarnated as a pigeon.
Conversely, my pouch has been impeccably behaved. Apart from getting an infection after its formation, and therefore not leaving St Marks until Christmas Eve – I’ll go to any lengths to get my husband to cook Christmas dinner! – my pouch has been wonderful. As are Mr Nicholls and his team; all the stoma nurses that looked after me; Mr Swift and Mr Hurley, and their teams from the Mayday in Croyden, and Mr Theodossi and his team from the same hospital. Oh, and of course Mr Clarkson, my obstetrician, who must have spent a few nerve-wracking hours overseeing my colectomy.

Yes, I’m glad I didn’t decide to become an eternal ostomist. OK, so I need soundproofing on my bathroom walls; my homemade curry results in  “Poucho Marks”  on the sheets (so strictly for when I’m on my own), and I’m buying shares in Sudocrem. But I made the right choice.

So if having an ileostomy isn’t your bag and you want to start using those bendy bag closures as freezer bag ties (very handy), go for it if you can. You don’t have anything to lose, apart from a few months off work! Blast the resulting itchiness…BOTTOMS UP!

By the way, my pregnancy went smoothly after my blip at 7 months and I gave birth naturally to a beautiful baby girl ( naturally to a girl – they’re stronger in the womb!). She’s now five and a half, with gorgeous red curly hair and blue grey eyes. Sally Louise, you were worth every bit of my story, and thank God for making you so strong…

Pouch Pioneer

Hannah Barrow has had her Kock pouch since 1972. She was born in 1914, and this was just about the very first Kock pouch operation in the UK, so she was a bit of a guinea pig. But she was so ill it was a risk worth taking.

I was born in 1914 in the small market town of Congleton. The two main streets were full of large and small shops, all owned by local people. We had three cinemas and three dances a week. These days, there is nothing for young people to do.

I started work at 14 years old, as a machinist in one of the many textile mills, mostly producing football and rugby shirts. In the winter, orders were very few, so we worked one week and the following week were on the dole. The week benefit was paid, we were compelled to attend night school to learn shorthand. I don’t know what that did for us!

I was on piece work. You earned your own money. Sometimes we would sit at our machine waiting for work from 7.30am till 6pm and go home without earning a single penny. Still, we had some good times and it was lovely countryside around Congleton.

My husband died 14 years ago and I have one son, Robert. My first husband, Rob’s Dad, died of cancer when Rob was five years old. They were hard times then with no extra allowances. I could not work, as Rob had severe asthma (there were no inhalers then).

In 1970 I discovered I had ulcerative colitis. My doctor sent me to Macclesfield Hospital for tests at the clinic. We only have a small hospital in Congleton. After a few months, I was discharged, without having seen the consultant. I weighed just 5 stone and I never went into what they now call remission. I was very ill.

My GP was wonderful. He asked me if I would go to the London Middlesex Hospital. For the following two weeks I stayed at our local hospital. The only treatment was codeine phosphate (60 mg). I then travelled to Crewe railway station by ambulance, which is just 12 miles from my home. I will not ever forget that rail journey. My husband and sister were with me, and I was met at Euston station by an ambulance.

I stayed at the Middlesex for five months for treatment. You were not told what that was in 1970. I did not improve, so a colostomy was the next step (resting the colon, hoping that the ulcers would heal).

I had a terrible time at home with leaks and blood coming from the colostomy, feeling ill. Early in 1972, I was back again at the Middlesex for another operation. Even in 1972 there was no explanation about the operation. I was just told that I would not use a bag. I had two consultants: Mr Cameron for the pouch and Mr Slack for the rectum (a valve was not used at that early time).

Of course, I was terribly ill and it was a big operation. When I was a little stronger and the pouch had started working, this was the time I had to learn to use the catheter. Sister and the nurses did not know how to do it, so Mr Cameron, doctor and sister took me to the bathroom to learn how to empty the pouch. Thinking back, what surprises me was that I did it without being embarrassed. Probably, I did it more by luck than judgement.

The problem was how to get some sleep without using the catheter, so the doctor came at night to put the catheter in the pouch, packed it round with cotton wool to hold it in and then attached it to a urine bag! Very cosy that was, until I needed to spend a penny.

The nurse would not give me a bedpan, as I was getting up in the daytime, but insisted I got out of bed. I could not wait any longer, so out of bed I got. Calamity! Out came the catheter and what a mess there was on the floor! I can laugh about it now, but I was devastated at the time. Then the nurse shouted at me! I cried all the rest of the night, and the doctor came and packed me up again. I really wanted to go home.

This was Tuesday, and there were no visitors until Saturday. Mr Cameron was on holiday for a few days at home, but the doctor called him in the next morning to talk to me. I can understand how it looked to some of the nurses and patients: it was a first time operation, and I was having a lot of attention. Mr Cameron and the doctors were in every day, to see how I was progressing and of course it created a lot of interest amongst the other medical staff.

After 3 months, I came home again. In the following weeks, there were things to worry me but my doctor sorted it out for me. He was so good to me. He even went to London to ask Mr Cameron all about my operation. I was having a lot of leaks, which upset me. Two years later, I went back to London again for the valve to be fitted and stayed in six weeks.

I had just one checkup afterwards. Instead, Mr Cameron used to talk to me on my sister’s phone. I still had leaks, but did not use a bag. Mr Cameron left the Middlesex later in the year. My wonderful doctor retired 16 years ago. I am still with the same surgery (sorry, medical centre!). It is a two doctor practice, but they don’t know about pouches.

I asked, if anything went wrong with the pouch, which hospital I would be sent to. The lady doctor said Whythanshaw Manchester, which is not too far away from my home. I hope they have done a pouch there, because I feel very strongly about GPs who don’t know anything about pouches, have a patient with one but don’t bother to find out about it.

In the year coming up to 2000, I cannot say that things have improved for me, except for the arrival of the Red Lion Group. Since my doctor retired, I have no personal support. I can’t express in words what a help the Red Lion Group has been to me.

My pouch leaks when the time comes to cook or eat a meal. I could empty it before this time, but when I have eaten it leaks again. That would mean using the catheter 8 or 9 times a day. I take codeine phosphate (15 mg) at bedtime, which keeps me continent during the night. I can’t use them during the day as they make me too solid for the catheter to work.
Now I am nearly 86 years old, I do what is best for myself and use a Surgicare pouch. Although I have a flush stoma, the flange is fine, no leaks underneath it, so I use the catheter 4 or 5 times a day.

I live alone in a sheltered bungalow, and do my own housework and cooking. I can’t walk any distance because I now have osteoporosis in the spine, which is bent. I also have arthritis. My sister takes me to the shops but I push the trolley around and shop for myself. I am able to write, and have a very active mind.

I have never had a car. I have had two falls fracturing both shoulders but I still managed the catheter. The doctor calls me frail, but I don’t know about that!

During my illness, my husband went to work, shopped, did the housework and visited me on Saturdays. Robert sat A levels when he was 17 years old and went to Warwick University, where he stayed for just two weeks before coming home. He went to work in an Accounts office until he was 18, then went to do an honours degree in computing science as a day student at Stafford. I was in hospital most of this time.

Rob worked for ICL as a management consultant, and ten years ago the sales manager and he started a business of their own in Congleton, which has now done very well: they have floated the company and since bought a computing business in the USA, where they also have an office (as well as one in Denmark).

Things seem to have come full circle now. The mills where I used to work are now offices. They have been renovated, and the outsides are the same as they were all those years ago. Rob and Steve’s company have one floor. I have been in the mill and they have kept the stone walls like they were when I worked there back in 1928. Now, of course, it is fashionable!

My Story…by Judith Harris

In 1980, I had the first symptoms of UC, but it remained undiagnosed for the next three years, until I became very ill in Malta while on holiday. Back in England and after extensive tests, the cause of the trouble was revealed, much to my relief.

For the next five years, I remained well, with six monthly checkups and Asacol tablets. Throughout this time, I continued to work as a chef whilst attending my local hospital.

1988 saw the birth of our much longed for son. Unfortunately, when he was twenty months old, the UC came back with a vengeance, and over the next year my condition gradually deteriorated. I had steroid enemas, oral steroids and any other amount of drugs, all to no avail.

I now felt so ill that I begged the local hospital to operate on me, even if it meant having an ileostomy. I was continually fobbed off with various excuses as to why I should not have an operation.

The pouch operation was mentioned during this time, and the local stoma nurse put me into contact with someone who had already undergone a pouch operation. He was a mine of information and told me about Mr Nicholls of St Marks, the surgeon who had performed his operation. I asked at my local hospital to be referred to St Marks, but was fobbed off yet again.

Fortunately, my husband had private health cover for the family with his job, so we made an appointment to see Mr Nicholls at his private practice. By this time, I was very ill. After I saw Mr Nicholls, I had the operation to remove my colon within the week. I was too ill to have the pouch made at the time of the first operation.

Over the next three months, I gradually gained weight, came off all the steroid treatments and learned to cope with a temporary ileostomy. I had the pouch fashioned by Mr Nicholls, again in a private hospital in London. Stage two was a very tough operation to get over. I felt very poorly for the next seven weeks until I had stage three (closure of ileostomy).

It took months to get over all the surgery. In the early years I had the same problems as everybody else: sore skin, frequent trips to the loo and bowel obstructions. I sometimes wondered if it had all been worth it.
There was no Red Lion Group then, and not a lot of information to be had. I had a couple of contacts I made myself with other pouch patients, and I collected all the information I could relating to my condition and operations.

Nine years further down the road, I am very glad that I have had the operation. The pouch has settled, I go to the loo five times in twenty-four hours and do not need any drugs at all. My one big problem however is that I have had seven small bowel obstructions due to adhesions. Thankfully, these have all settled in hospital without the need to be operated on again. My last one was two years ago and – fingers crossed – it will not happen again. I have had a few bouts of fairly mild pouchitis, which have cleared up with a course of Flagyl.

I now have an active life, walking, cycling and generally enjoying myself. My diet is not too restricted: I can eat most things, but usually have several small meals a day. I find herbal tea very soothing, especially camomile, peppermint and ginger (all made by Twinings). I even managed to work again as a chef, but at the moment I am not working.

One major drawback was the lack of counselling for my husband and son. A situation that I feel has still not been addressed enough.

I am sure that this is all very familiar to UC and pouch patients everywhere. I find that my best course of action is to keep optimistic and to keep my sense of humour when things go wrong. I try to relax as much as possible, as stress makes my bowel problems worse. Things do get better in time, and I now thank God that I am alive. I look at my son who is nearly twelve and remember the times when I did not think I would live to see his third birthday.

I am now an outpatient of St Marks where I go for annual checkups. This hospital specialising in bowel problems really is a “Centre of Excellence”.

A Friend in Need is a Friend Indeed

Jean writes about how the Red Lion Group helped her find out more about the pouch operation.

In the month of June 1998 I had non-stop diarrhoea and bleeding from the rectum. After days of no appointment available at my doctor’s, I asked my daughter to drive me to the local hospital, where the duty doctor admitted me saying I had ulcerative colitis.

“What happens now?” I asked. He told me they would give me a course of different kinds of medication to see if they could improve my situation and monitor my bowel movements.

What a humiliating business that was, having to inform the nurse each time I had a bowel movement, which was – I might add – duly inspected, discussed at length and details then entered on my medical notes.

The weeks went by, my weight dropped to 7 stone, I had three blood transfusions, I was losing my hair, the pain was unbelievable. And there was no improvement in my ulcerative colitis.

I then had a visit to my “bed space” by five men in white coats informing me that they had tried all possible ways of treating the condition with medication, but to no avail. My only option, they told me, to ultimately save my life and render me free of pain, was surgery. This involved fitting a “bag”, until a reversal might be possible in a few months’ time when my health was much improved. I signed the relevant forms and the ileostomy was performed in August 1998.

Out of hospital, months later, I was much better, and on my second visit to my surgeon, I discussed with him the possibility of me having a pouch operation.

His advice was very wise: “You realise you will never be the same. There could be leakage to deal with and other minor problems. Go away, make enquiries, read about it, do your homework and then come back to see me.”

Help! I could not find anybody that had had the first op, let alone the second. I badgered my friends, read everything I could lay my hands on relating to it, made lots of phone calls, and was a general pest to one and all.

My stoma nurse sent me a magazine called Roar! I rang the Chairman’s number and spoke to him and his wife Morag, two extremely nice people (Ed: I promise I did not put this compliment in myself!), who were able to help with some of my questions. I have since joined the Red Lion Group as a member. My nurse also told me she had spoken to a Mr David Irving-James, also from the Red Lion Group, who would be willing to speak to me in connection with my operation.

I rang David, mentioned my nurse, and asked him if he knew of anyone who had had the pouch operation, as I was doing my homework prior to seeing my specialist. Well, David could not have been nicer. He sensed my unease, and by the time the conversation was almost at an end, I was made to feel like a long lost friend. He offered to visit me at my house, which he duly did 3 days later. He brought along with him a lady called Gill Hawkes, who had her pouch op in September last year.

Between them, they answered all my questions honestly, allayed my fears and provided some very relevant and useful information. David also advised me to get the best person for the operation if possible. I told him I was going to tell my consultant that I had done my homework and wanted to go to St Marks to have Professor Nicholls perform my operation. Both my visitors laughed because they too were under St Marks.

Before this article is published, I will have been to St Marks to see Professor Nicholls. I am not “out of the woods” yet. I may be rejected for the operation, but I do not wish to end on a negative note. If at the end of the day my stoma has to stay, then so be it. My stoma gave me back my life, and wonderful people like David and Gill are on the end of the telephone willing you to enjoy every aspect of it.

In 1999 David Irving-James wrote:

I am sure a number of you can relate to Jean’s story and I hope that this article brings home to readers the importance of having capable and willing members who are available within the regions to help those who are considering pouch surgery.

It is a big leap into the unknown, especially for someone whose stoma works very well: exchanging a known acceptable quality of life for an unknown quantity is not an easy decision to take, as many of us know.

The advice, support and views from an existing pouch owner are so valuable to a person facing a decision that will affect the rest of their life. Of course, it is important to remember that everyone’s experience is different, and no potential patient should be given the impression that what has happened to one pouch owner will happen to them. Nonetheless, the more people’s experience they hear, the better able they will be to make an informed decision.

I am pleased to say that Jean has now heard that her pouch operation will be going ahead soon, hopefully before the end of the year.

Airbags and Seatbelts

Among other things, Bill Shepherd tells us how doing what you enjoy can help keep you off the toilet!

Having recently had my pouch operation, I applied for a Radar key so that I could use the disabled toilets if necessary. I should point out that the key is quite large, and I find it useful to wear it on a tape around the neck.

As of yet, I have not had to use it, but on behalf of our group checked out a number of disabled toilets both locally in Hertfordshire and in North Wales. Only one failed to meet a very high standard.

I am normally employed as a lorry driver, and returned to work (“light duties”) in August. Between lorry and car, I cover in excess of 80,000 miles a year, so the Radar key will give me real peace of mind.

I am hoping it will be a bit like airbags and seatbelts: I don’t want to test them for their purpose, but if I need them, I shall be really glad to have them!

I am of the opinion that if you are doing something you enjoy, your bowels, bag or pouch are not very active. In the 28 years that I have had ulcerative colitis, I have only had to stop three times in an unplanned, urgent, embarrassing way. I believe this is because I enjoy my job.

I also have another true story that illustrates my theory perfectly. Many years ago, I had an old school friend who commuted into London to work each morning to a job he did not enjoy.

He also had IBS. His journey each morning was about 18 miles on the train, but every morning he had to get off the train at three or four stops to use the toilets (any pouch owning commuter will tell you that the toilets on a commuter train are just not suitable for our needs!).

However, in his spare time, he was a tennis umpire at Wimbledon and other tournaments. Amazingly, he was never affected by urgency while on the court. I think it was because he enjoyed what he was doing, so he never gave his IBS a thought.

Perhaps there are Red Lion Group members who have problems controlling their bowels, and so have given up favourite hobbies because they are afraid of needing the toilet at an inappropriate time. I hope my friend’s story will give you the confidence to go back to doing something you enjoy.

Finally, I do have one worry, which other members may share. I do not feel in control on public transport, with inadequate (or no) toilets on most trains or needing to get off and on buses then paying again to get on the next one. For this reason, I like the security of my car, holding my spare underwear, trousers, wipes and other toilet equipment (back to the airbags and seatbelts again).

My worry is toll roads, first tested in Leicester and now in Leeds and Edinburgh. I think we should look at this early on, while the tests are still going on, for some sort of help or exemption from payment. Maybe a disabled sticker with a “T” on it for parking near toilets, and only near toilets. After all, if Radar recognises incontinence as a disability, why not?