Wednesday 11 May 2011

Getting a stoma, part I

So how did all of this start? If the question was why did all of this start, I honestly don't know yet. The diagnosis made by the doctors in hospital was ulcerative colitis, which is a type of Inflammatory Bowel Disease (IBD) and causes ulcers to form in the large intestine (colon) and rectum. This results in inflammation and, therefore, pain and diarrhea. There are various other symptoms, but as I'm not an expert (certainly not yet), if you want to read more, I'd suggest reading the NHS Choices page.

Most people with IBD (of which Crohn's Disease is another type), from what I've read so far, tend to experience a range of severity of symptoms in bouts or "flare ups". These can be managed with medication and adaptations to diet and the disease can go into remission. Surgery to remove the diseased colon (or ileum/small intestine, depending on where the inflammation is) is usually considered only in emergencies or if the disease is causing lots of problems.

My body, however, decided not to do things by halves (as amusingly put by a friend in a get well soon card!), and instead launched one huge flare up with no warning. Two months ago, I started feeling feverish, before starting to suffer from bad diarrhea, vomiting, and pain in my abdomen. This continued for a week, during which I ate hardly anything.

My doctor, thinking it was a stomach infection, gave me antibiotics and suggested that I attempt to starve it, so I continued not eating for another few days, during which my pain worsened to the point where I was forced to sleep upright in a chair, because I was finding it difficult to lie down and get up again in the time required to make it to the bathroom. I was weak, tired, and in pain, and so when my stomach and legs began to swell up, I asked the doctor to make a home visit. He hospitalised me that day, and I remember being glad that I would be going somewhere where they could, at least, give me more powerful painkillers, sleeping medication and food through a drip. A few days, and hopefully I would be out and about again and eating. Oh, eating! I missed eating almost as much as I missed sleeping longer than two hours straight.

When I got to the hospital, they immediately put me into a side room, as I had unexplained (and bad) diarrhea. I was also put onto an IV drip, which was a new experience for me (I'd never been into a hospital for anything more intrusive than a blood test or x-ray), and - now that I think about it - I can't even remember when they put that in. My main memories from the first couple of days were going to the bathroom, trying to convince the CT scan doctor that I wasn't pregnant (because the ward nurse had misplaced my urine sample and therefore not done a pregnancy test), and having to change out of my own clothes because I was so swollen that they didn't fit.

Two days later, following multiple x-rays, my CT scan, and many blood tests, a doctor came to see me to say that they thought I had IBD and that they were concerned that my colon might perforate (or tear), so they wanted to operate and remove it.

My first thought was: "Hang on, don't I need my colon?", but I kept my mouth closed and the doctor proceeded to explain that they would form a stoma from the end of my small intestine and I would have to wear a pouch or bag over it.

My second thought was: "Are there any other options?", but, again, the doctor answered before I could speak and said that they were recommending this as emergency surgery, to take place as soon as possible, because otherwise I might die.

I was in mild shock at this point. At no point in the previous two weeks had I considered the possibility that what was happening to me was anything that antibiotics and rest couldn't fix, let alone that I would need surgery, that my body would noticeably change, or that my life would be in danger. I cried a little bit, hugged my wonderful husband, and took some deep breaths. I was going to have an ileostomy.

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