Stories

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?

Is This a Bag I See Before Me?

Gillian Appleby has no doubts about whether the pouch operation was worth it.

I can’t imagine my life without my pouch now. I have a recurring dream that I have a bag again but it is not meant to be in use, it’s just in case (!) and it is over my scar. But even though I have my pouch, the bag keeps filling up. I have had other horrible dreams of having a stoma and it is overworking and somehow I forget/can’t put the bag on it. All this proves how much I really fear ever having a bag again.

I love the fact I can look and touch my stomach without feeling something plastic on it. When I had my bag, I once went out with a really nice bloke, and when we were in bed (he didn’t know I had a bag at first) he said “What’s that, plastic?” and I said “No it’s my bag”. And as you can imagine, the room had an eerie silence to it for quite awhile.

Another quite amusing story is when I was at a party talking to a girl who said she had Crohn’s disease when she was a child but it had since never returned ( I have always wondered if this is possible). I was telling her I had had my colon taken out, emphasising the fact that all of it was gone. She said to me, “Well that’s horrible, but you know some people have to have a bag.” I actually did reply “Yeah I know, I have got one”. She either didn’t hear ( I did say it rather quietly) or she chose not to. The funny thing is that why did she think I DIDN’T have a bag? Maybe she thought she’d be able to see it if I did have one.

I always felt a high class freak with a bag, even if people couldn’t see it. and also the social taboo of being a little bit different to other people. But I didn’t want to feel any of this because if people can’t accept you the way you are, then it’s them that has the problem. But then again, it’s you that has the bag.

Anyway, most of all I am very grateful indeed to the wonders of technology and to my very clever and skilful surgeon, Mr MacDonald,  because I feel almost back to how I was before I ever had my colon out. I don’t feel such a freak and not having a bag stops me from thinking about the fact I don’t have a colon.

My Story…by Collette Bijoux

I suffered from UC from 1981 onwards. I had two severe attacks in 1982 and 1995, which resulted in my hospitalisation. However, high doses of steroids worked well for me, and I was out of hospital after 10 days.

I had a colonoscopy in 1997 which showed that my whole colon was affected by the UC and had shrunk to such an extent that the doctor performing the procedure was well into my ileum and took several biopsies from there before he realised the problem. I found the whole procedure extremely painful and distressing. I could even see the light of the scope shining through my abdomen! I was advised to have the pouch operation, and my appointment quickly came through to see the pouch surgeon.

I was given a date for my operation (May 1997). However, in the previous few weeks I had received literature from the Red Lion Group which contained stories from people whose operations had not been very successful. This, along with the fact that I was told the Merseyside rep, Blanche Farley, was wanting her pouch reversed to an ileostomy put me off. I told the surgeon I no longer wanted the op.I continued with my visits to Dr Walker, the gastroenterologist at Fazakerley Hospital in Liverpool. My health was not brilliant, but I think you get to a stage where you have felt awful for so long that you think it is normal.

However, in my job as a registered sick children’s nurse, I was working full time shifts. This meant I was finishing lates at 11 pm and starting again at 7 the next morning. By the time I got home and had to be up again at 5.30 am, I was exhausted. As you will all know, I would not be sleeping those few hours, but would be up 4 to 5 times to pass small amounts of blood-stained motions.

On my days off, I had to force myself to clean the house and all the other tasks involved with looking after a husband who works long hours and has on-call duties. And three teenage sons who eat for England!
During one of my clinic visits, I spoke to Dr Walker about the op again. He again wrote to the surgeon, Mr MacKie, and I was given an appointment to see him very quickly, in March 1998.

However, before I saw him, the stoma nurse Maureen Stoddart came to see me, and I expressed to her my fears about the pouch being as bad as the UC. She put me in touch with Jenny Dobson, who had the pouch procedure two years previously, and she completely changed my outlook. The pouch had improved her quality of life 100%.

I had the first stage of my pouch on 7 May 1998. The first 3 days were very painful. I have a very low blood pressure all the time, the nurse on duty on my first night post operatively thought it was the result of my epidural, and so switched it off! You can imagine the agony I was in, as I had been in theatre from 10 am until 7 pm that night. The nurse who had come with me to observe the op said her back was very sore with having had to stand so long.

The rest of my recovery was uneventful. I left hospital on 21 May with my ileostomy. I had a few problems with leakage, and was very happy when it was reversed on 30 July. I had no problems post operatively: no pain, and my bowels started working perfectly straight way, and I have had no problems since.

I still use the toilet frequently, but there is no urgency. After my op, I was asked by my stoma nurse to speak to others about this surgery, which I gladly did. However, the surgeon did not seem happy about this, as he said I might give a wrong impression about its success, and I was not asked again. I returned to full time work in November 1998.

Morag Gaherty wrote in 1999:

Collette’s story illustrates perfectly the fact that everyone is different in whether a pouch works for them, and this is the point that the surgeon was making. It is certainly true that everyone who shares their experience with a potential patient must stress that what has happened to them may be completely different from what happens to other people, in both good and bad ways.

However, it does seem a shame that this surgeon’s potential patients are maybe being given an unnecessarily bleak picture of pouch surgery by being prevented from speaking to successful pouch owners as well. Had Collette not shared her fears with her stoma nurse, she too would still be living with a quite unacceptable quality of life, for fear of the alternative.

Very occasionally, I receive comments that Roar! presents too negative a view of life with a pouch, and I know that a large proportion of our members have a far more positive experience of pouch surgery – indeed, some find it enables them to get on with their lives without ever having to think about the pouch.

We do have a policy of presenting life with a pouch “warts and all”, because the Red Lion Group is a resource for those weighing up the pros and cons of pouch surgery. However, we are limited in what we can publish by the material we receive from our members – and, if only those who have problems write to us, then it is difficult not to give the impression that all pouch owners do have problems.

Just because companies only have a Customer Complaints department, and not a Satisfied Customers department does not mean they don’t have lots of satisfied customers – it’s just that they don’t write in to say so!

What I am saying is this: if your pouch has improved your quality of life, please take the time to write to us and TELL US

My Story…by Dorothy Simpson

Dorothy had her pouch surgery (in 1986 and 1987) at St Marks City Road, with both stages performed by Prof Nicholls. She had had ulcerative colitis for more than 20 years.

I found the “Finding the Cause” article on the front page of Roar! (issue 14) most interesting because at the start of both my pregnancies I suffered from severe diarrhoea. After the first three months of my first pregnancy in 1963, this settled down with no further trouble.

However, with my second pregnancy, I had severe, constant diarrhoea which could not be studied or treated because of possible harm to the baby. The diarrhoea continued after the birth of my son in 1966, until I had lost a lot of weight and my GP became concerned.

Over the next 20 years, I suffered from pain and bleeding – all that goes with ulcerative colitis, plus erythema nodosum. I was a District Nursing Sister at that time (SRN), and had to retire from my work that I loved.

I had an ileo-rectal anastamosis in Sunderland, but continued to need frequent toileting. My two consultants got together to discuss this, and the upshot was that I was referred to St Marks.

I had surgery (a W pouch) performed there shortly afterwards, and eventually began to feel better. The worst part of the surgery – apart from the pain – was having an ileostomy. It made me feel degraded and depressed, and it leaked constantly. It was a thing I always said I’d never have!

About three years after my pouch surgery, I completed a 43 mile walk, non stop across the North Yorkshire Moors, the “Lyke Wake Walk”, and raised £100 for the Friends of St Marks. I completed it in 16 hours, and I’d do it again if I had the opportunity, even though I will be 61 at my next birthday.

I can’t compare my life now to what I was like before surgery. I could not walk as my joints were so swollen and painful. At one point, I was in a wheelchair. Now I am as active as when I was nursing. I’m having a few pouch problems at present, but these will be sorted.

I can honestly say that having a pouch was the best thing that happened to me during the worst years of my life.

My Story…by Buddug James

I did not suffer for very long with ulcerative colitis before being operated on. I became ill on the 8th August 1997. I had diarrhoea within half an hour of eating some gammon. This always stuck in the back of my mind and I was amazed when I read your article on food poisoning in Issue 14. However, I was diagnosed very quickly as having UC by my G.P. (within three weeks).

I was given steroids to take (both ends) for several months and did recover quite well until I had a horrific colonoscopy (if someone offered me a million pounds I seriously would not contemplate having it done to me again) .Then the UC returned immediately with a vengeance I was back on the steroids and numerous other tablets and creams.

To cut a long story short, by the beginning of January 1998, I was getting worse, totally depressed, in severe pain and desperate. I begged for an appointment at the hospital and tipped a carrier bag of tablets on the doctor’s desk and informed him that I was not going to take another tablet (I was on about 27 tablets a day). In the end, I do not think they knew what and how many tablets they were prescribing to me.

That afternoon I was admitted for the first time into hospital. They observed me for a week and gave me intravenous steroid by drip . It did not work. My colon was well and truly ‘cream-crackered’. I was told that it would have to be removed and that I would have a bag instead.

I had such mixed emotions – the main ones being fright and relief. Relief, that I would be better and fright of the unknown future – a bag of ‘poo’ stuck to my tummy. I felt as if was going to become deformed, and felt I was too young at 32 to be disfigured. I had my whole life ahead of me. But I had to be realistic in the thick of it all and realised sensibly that I could not carry on as I was (house-bound) and that this was my only option.

I was scared, very scared, and had so many questions. My surgeon was brilliant and answered all my questions and I owe him so much. I also owe a great deal to my family, especially my boyfriend (now my fiancé) and my mum. I do not think I could have come through this as well as I did without their tremendous support.

It all happened so quickly that I did not have time to speak to a fellow patient before my first op which was a great shame. One of the worst times however was having to wait a whole week after the op to see if I could have my stoma reversed. When the surgeon told me I would be able to have the reversal and have the pouch, I kissed him – I was that relieved. I was crying with joy.

I recovered really well and went back to work part-time in May and June. I was ready for op number 2 (pouch formation) on the 8th July (boyfriend’s birthday). I had an additional surgeon at this op. So this time I had two brilliant surgeons looking after me. It went well and I was out of hospital after 10 days.

I had managed to speak to a fellow pouchie before this op and he told me to be prepared for a difficult time between op 2 and 3. Boy was he right or was he right? For 3½ weeks I was constantly sick, could not eat and lost over a stone. I went down to 6½ stone and was so weak I could not get out of bed. Needless to say my recent scar was hurting like hell!

I was in and out of hospital trying to find out what was wrong. Eventually, it was discovered that my potassium levels were too low and this was cured by placing me on a drip. Whilst all this was going on I also became paralysed in the mouth. This was very frightening as I thought I had had a mini – stroke on top of everything else. The cause of this was eventually traced to the ‘Stematol’ injection to stop sickness. If this was not enough I also had major problems at this time with leaks.

This was my lowest point. I was supposed to have my 3rd and final op at the end of August but had to wait until the end of September because of this hiccup.

Since the 26th of September (date of op) my pouch and I have not looked back! No more incontinence and soiled knickers. No more pain. No more being house-bound. No more being frightened of what to eat/drink. No more depression. Instead, plenty of happiness and joy at being alive and living and living and living some more!

I went back to work last January (1999) part-time and have been full-time since March (1999). I have been seriously making up for lost time recently.

At this moment in time, looking back, it does not feel as if I have been through all of this. I knew what I had to go through, dealt with it and just went from one op to the next and eventually came out the other side. I do not know how I did it to be honest, but one thing I do know – I am glad I did.

One very important thing to remember is that even at your worst: “There is always someone else worse off than yourself”.

Another point I would like to add is that the help of a herbalist and reflexologist were an enormous boost to my recovery. The herbalist did wonders throughout helping me with my diet. I had two excellent surgeons, great family and friends supporting me. So anyone who is considering a pouch – GO FOR IT – you only live once. I would only be too willing to speak to anyone who wants advice/reassurance on the pouch op.

Finally, thanks to those ladies who responded to my request for advice on pregnancy recently. And let me wish everyone in the Red Lion Group a Happy New Millennium!

Successful Pouch Example!

My Success Story

Much information about pouches describes problems that are experienced. Here’s an honest account about what I feel has been a very successful pouch.

I became seriously ill with Ulcerative Colitis in 1999 (in fact, I spent most of my 40th birthday in the toilet), and after just a few months, I was told that the colon would have to be removed. It was at an annual inspection of my remaining rectal stump that a pouch was recommended, and I was given all the information I needed to make a decision. I really feel I made the right choice, and will be always grateful for that option.

I was in hospital for just under 2 weeks for the first operation in February 2007. There was a small complication of an infection where I was sown up, but I was back at work full time in 5 weeks, and even cycling in 6 weeks. My second operation was in May of that year. The operation was on Tuesday, I was home on Thursday, and back to work on the following Monday! I was even running again within a few days! I do agree that in this respect, I was extremely lucky, and some others have issues which affect their recovery from surgery.

It took 3 or 4 months to settle down, to the point that each day was pretty much the same, without any surprises. In February 2008, about 9 months after the final surgery, it appeared to start to work as the large intestine would have, in that the output was better and more stool like than any output I had ever had from the stoma. Also around that time, I was able to “fart”, but only in a certain position. I had been told that I would be able to release air, but I wouldn’t “be able to knock any walls down”, as one pouch owner put it. I am always amazed at how the anal sphincter somehow can tell whether air can come out safely, or whether there would anything unwelcome with it.

Three years later, I feel no different from anyone else who never had the problem to start with. I eat everything (except curry, but that is just my personal taste). I do everything (all day cycling expedition, run a marathon, drive 240 mile journeys to Liverpool without stopping, swimming) without giving the pouch a thought. But according the possible outcomes described by my surgeon, I am probably in the least successful category, according to the number of times I need the toilet per day. I go 6 to 9 times a day, and normally once at night. A lot of that is down to the amount I eat – which is a lot – so it must be a case of more in means more out! But I can hold on for at least an hour, normally 2 hours. Many times, I go to the toilet because I can, and it just makes me totally comfortable again. I have no pains at all; having stocked up on peppermint oil capsules for stomach aches I used to have with a stoma, I haven’t touched one in over a year.

I was warned about a number of things. For example, that I would need to apply cream every time I go to the toilet. Well, maybe I do once every couple of months. Otherwise no skin soreness at all. That I would have to be careful what I eat – I eat everything! That I would be on Loperamide for the rest of my life – I take two tablets every couple of weeks, when needed! That I would be deficient in some mineral or vitamin – no sign of that, I have loads of energy for life.

To have my body image back, without the unorthodox appendage that I had to conceal within my clothes, is such a relief. No more 10 – 20 minutes every morning to change the bag and clean up. No more bags blowing up like a football inside my trowsers. Feeling normal again. Priceless.

If I can give any support to people considering pouches,  I would be very pleased to – please go to “Contact Us”!

Andrew Millis

What does a pouch look like?

This is an X ray of my pouch. Two months after the formation of the pouch I was invited back to hospital where I was asked to lift my legs up to my chest in a foetal position, and a tube was inserted into the pouch, through which a marker fluid was added. This came out though the lower part of the loop ileostomy. Meanwhile the radiographer took loads of pictures! The pouch is the kidney shape object that shows up as a brighter white, and the tube that provides the marker can be seen.

Anonymous.