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.