It was April, 1993. I was 21, and only one term away from graduating from Nottingham University, and came home for Easter holiday. I'd had persistent back ache for about a week but had attributed it to the university getting a new computer lab which I'd been using.
My problems started almost as soon as I got home. At first it was a constant "stomach" ache, but soon this turned into diarrhoea, and not long after I started to notice small amounts of blood mixed into the stool. I visited my doctor who suggested a diet of dry toast and biscuits. I tried this for a few days by which time without seeing any improvement; by now I'd been ill for about two weeks.
I haven't yet mentioned my mum. She was then a nursing auxilliary up at our local hospital and, whilst I'd never heard of ulcerative colitis, she was familiar with it and had already realized that there was a very strong possibility that I had gotten either UC or Crohn's Disease, so after seeking the advice of the consultant under whom she worked, I bypassed my GP and was admitted directly to Manby Ward of Louth County Hospital in Lincolnshire.
I was given a rather rude awakening to the fact that there might be something seriously wrong with me in the form of a sigmoidoscopy. For those that don't know, a sigmoidoscope is basically a metal tube about two or three feet long which is inserted into the rectum; air is pumped in and an endoscopy camera is used to examing the rectum and lower parts of the colon; biopsy sample can also be taken. The latter part sounds painful but in fact you feel almost nothing (the bowel walls don't have many nerves); what can hurt is if the person pumping air in is over-zealous, turning a procedure which should be merely uncomfortable into something quite painful.
Having established that the inner lining of my colon was indeed ulcerated, I was put on intraveinous hydrocortisone to try and reduce the ulceration. During the following week I devoured every scrap of information I could find on UC and CD, and thus also on ostomies. By the end of the week I was no better, and since it had been decided that I had UC and not CD, I had already reconciled myself to the idea that an ostomy was going to be a lot easier to live with than the colitis, and having not had any proper sleep in almost three weeks I was prepared, even keen, to have my colon out. (Of course, I wasn't keen to undergo major surgery, but the colitis had made me feel so bad I was ready to try anything to improve things.)
My consultant had led me to believe that if I hadn't improved at the end of that week, I would get the surgery, but upon being examined by the surgeon I was proclaimed "too healthy" for surgery. I was exasperated but lacked the confidence to contradict him. Instead, they decided to try some exotic antibiotic which the consultant had read about (I kid you not - I tried to look it up for this article and couldn't find it, it was so exotic!) and feeding me with TPN (ie. intraveinously).
Now, dear reader, I don't know what the longest time you've ever gone without food is, but after just a few days of this I felt worse than ever. My stomach was bloated and my mouth felt like it was coated with asbestos (I wasn't allowed to drink more than a few sips of water each day). After about 4 days of this they decided I could at least drink again, and moved me off IV steroids and onto prednisolone in both oral and suppository form (the latter in theory to preserve the rectum - what a waste of time that was!). That was the worst mistake of all; as soon as I came off the hydrocortisone, my bowels erupted and I visited the toilet every hour almost exactly on the hour.
There were two good things about not having eaten for a week. First, my stool was now at least half blood, and we saved some to show to the surgeon; that turned out to be a Good Move(tm), as it finally made him see the light. "That", he said, referring to my colon, "has got to come out." He was trying to launch into his spiel about the various different options (straight ileostomy, ileo-anal pouch) when I stopped him dead and pointed out that I'd had rather a long time to research and consider the options and would he please just get on with it and give me an ileostomy. That was a priceless moment.
The second good thing was that there was no reason to delay the surgery during the normal "nil by mouth" period, so within a few hours I'd had parts of me shaved which I'd never thought I'd see hairless after puberty, had the destination of my stoma marked in black felt tip on my belly, donned my surgical stockings, and was wheeled off into the operating room. It turned out to be pretty lucky that I was right ready to go; when I saw the surgeon afterwards he told me that if we'd waited even a day longer I'd probably have been an emergency case with a ruptured bowel.
Approximately four hours later, at about 22:00 on Sunday, 3 May 1993, I emerged, minus my colon, rectum, and anus, and up by one ileostomy, a real impressive abdominal wound (nicely cut around my navel; good touch, that), and an epidural which did nothing for my pain except compound it by rendering my legs completely numb. I couldn't even take a deep breath without being in agony. I was also freezing cold and had to be wrapped in a space blanket to stop me shivering.
Those first 24 hours or so in the "high dependency unit" were a very unpleasant experience, but I'm glad to say that they soon saw sense and moved me onto a "patient administered pain relief system", ie. a morphine drip with a button I could press. (Okay, I couldn't press it often enough. But it was a lot better than the epidural.)
Immediately after the surgery I weighed about 90 pounds (my normal weight back then was 120 pounds; I'm now about 140), and despite them not being happy about the rate at which I was gaining weight back (I've always been able to avoid putting on weight, and hospital food isn't the best way to go about it) I was discharged 8 days later, very happy to be home, able to spend many hours away from a toilet, and very, very tired.
I had to wait until the following Easter to resume my studies and discovered in the meantime that the UK social security system has some big flaws when it comes to dealing with full time students who fall ill, but fortunately between my family and my summer job as a civil servant (which had also paid me a decent busary as part of a sponsorship scheme) I survived okay and graduated in the summer of 1994.
If I could go back and do it all again, would I have done it any differently? Not much. I would have pushed much harder much sooner for surgery. I wouldn't have been so willing to let them experiment in vain on me instead. And I would've tried to prevent them using an epidural for pain control. But other than that, I'm happy to have made it through the experience alive and pretty much intact, with just my stoma and some cool scars to show for it.
Copyright © 1997 by
David P Gymer
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