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Sunday, 6 December 2009

My "Stoma Buddy"

The bed I was in at Queens Medical Centre earlier in 2009.

I had been given the number of someone who had been through the operation that I could ring and ask questions. My "Stoma Buddy" as my wife referred to him.

It was with some trepidation that I rang, as it's not usual to discuss the minutiae of personal plumbing with someone you have never met; however one thing that UC can help you with, is coming to terms with yourself and your bodily condition. So I rang the number.

A busy and positive voice answered the phone. The first thing he said was that I could ask him anything I wanted, and he reassured me that there was nothing that could embarrass him.

His story, in brief, was that he had had Ulcerative Colitis from 1987 - 2004; and as he said (and as I have discovered over the last 12 years), you can adapt to anything.

During his time with UC he was not really in pain most of the time, such is the case with me. Nevertheless he developed a load of coping strategies. Just as I have done; just as anyone with such a disease will do.

In 2004 it all came to a head for him, and he was admitted to hospital where he was administered to for 2 weeks. Then the consultant (my consultant as well) said it was really time for him to have the op. He was in a very bad way, and he had no choice. I, at least, am not in an immediately bad way; I'm not in pain, and I have got a kind of choice.

He described how the consultant waited with him for the ambulance to take him to the hospital where the op would take place. He spoke with great admiration of how she looked after him, administering the Temazepam at just the right moment. I tried to imagine her doing that.

So my "Stoma Buddy" had no chance to prepare himself physically or psychologically for the operation, as I have.

He said something very interesting about forums and researching Ulcerative Colitis. The trouble was, as far as he could see, that the forums were dominated by the same questions and the same problems, and these were mainly negative. He felt it was shame that there were very few positive experiences of hospitals, doctors and surgery described on these forums.

He was offered a choice of anaesthetics, but of course he didn't know what was best, so he asked the anaesthetist what he recommended. Epidural was the choice, so he took that. Afterwards he was on morphine with some kind of pump that he could control himself to give pain relief.

Recovery, he said, in his experience consisted of about three horrible days, and then you feel better. However he developed a hole in his stomach - a fissure - and this meant that he spent more time recovering.

But he also said that after the operation he felt amazing, and felt as if he could run a marathon.

Life with a bag, he says, has its problems. Learning to accept it is the most difficult thing, he felt that everyone was looking at him all the time, and that it was difficult to be intimate with his wife. He had a few accidental leaks, and sometimes a bag would come off. But this was solved as he got more used to dealing with and using the bag. Cutting the hole in the neck of the bag the right size seemed to be crucial (2mm wrong and it could be a problem). He would always have a towel on the floor when he was showering as he could easily spring a leak and he talked about it taking about 45 minutes a day to get sorted and dressed.

He has since had a pouch constructed, and now feels absolutely fine.

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