VESUVIUS AND I

Vesuvius and I

Or How to Love Your Stoma

In retrospect, the first time my Ulcerative Colitis reared its ugly head was in 1980, and I suffered occasional flare ups from then on.  But it wasn't until 1993 that I was officially diagnosed as having the disease, which was initially treated in the traditional way with Asocol and steroids.  They had little or no effect, and things slowly got worse, until I was in constant pain, bleeding rectally and had faecal incontinence.  By the middle of 1995, it was obvious to me that I needed an ileostomy.  This held few fears for me.  My grandfather and a couple of his brothers had gone through similar procedures thirty years previously.  The NHS had other ideas, and in August 1995 hospitalised me to pump me full of massive doses of dextramethasone, a steroid far more potent than prednisone.  This had a lasting effect, but not the one intended.  It gave me glaucoma. It had no effect on my UC.

By Christmas 1995, it was obvious I couldn't carry on as I was, and my mother-in-law put up the money for me to see a specialist surgeon privately.  He confirmed what I already knew - that radical surgery was necessary if I was to have a reasonable quality of life.  If I didn't have it, then in a few weeks I would be dead.  Thus it was that on 12th February 1996, the first day of the rest of my life, I found myself in Blackheath Hospital preparing to say a not so fond farewell to most of my bowels.  It had agreed between Mr. Payne, the surgeon, and myself, that there was no point in anything other than a full panproctocolectomy. The operation took eight hours, and was made harder by the effects of the months of steroids.  Always overweight, I had ballooned in the previous year to a weight of 125Kg.  Thus it was that Vesuvius, who had already been given a name prior to his birth, was created.

I knew what to expect.  A stoma care nurse had visited me prior to the operation to prepare me.  We agreed where Vesuvius was to be placed, and X marked the spot.  When I came to, I was surrounded by tubes and wires, and on my belly was a bag, the first of many Braun Biotrol pouches which were to cover Vesuvius in the years to come. For the first few days I was "out of it", drugged with morphine.  I could barely move as the operation had severely affected my stomach muscles (although they recovered).  In addition, I couldn't cough or sneeze without thinking my stitches were about to burst. From then on, things started to get better.  I had a meal - a simple meal of chicken and pasta - and enjoyed it.  I asked if I could have a cup of tea.  I was told I could drink as much tea as I wished.  From that point on, I just knew life was getting better.  I am a tea addict.  Imagine telling an alcoholic they could drink as much as they liked. The effect on me was similar.  On about day six or seven, when surrounded by visitors, including my wife, daughter and surgeon, I vomited spectacularly.  The only one not worried was the surgeon.  "They often do that, it's a good sign", he said, and he was right, as it signalled the start of my digestive system starting to work properly again.

I spent a total of fourteen days in hospital.  When I left, although still in pain I could (just) walk, and was becoming adept at managing Vesuvius and his changes. Life slowly but surely got better. The pain diminished until it finally went, I became more mobile, and I started to resume a comparatively normal life (I had already taken medical retirement in 1990 for an unrelated illness). Vesuvius had become an accepted part of my life.  It seemed perfectly normal to have a bag attached to my waste.  Emptying became second nature.  I could get up in the middle of the night and empty without completely waking up.

In May 1996, I took a recuperative holiday in Calpe.  The Costa Blanca had become an ever more important part of my life since my first ever visit in 1986.  One evening I announced that I was going for a walk.  It was only about 800m, but it was a big step. I was feeling truly alive for the first time in years.  It was also another pivotal point in that it was during that holiday that the prospect of moving to the Costa Blanca was first discussed seriously, although it wouldn't be until Spring 1999 that we'd make the final decision.  In September 1996, I returned to my work as a computer technician and teacher, after an absence of a year. Normality had returned.

Since then, Vesuvius has been an ever present part of my life, demanding emptying every few hours and changing every few days.  Most of the time, he behaves himself.  Occasionally, he gives me problems such as erupting violently and causing a leak or blocking and causing me pain and discomfort until a warm bath, some grape juice and gentle manipulation ejects the offending article.  Vesuvius, if he could talk, would say it was my fault feeding him unsuitable foods, and he would have a point.  There are very few foods I can't eat.  Fibrous fruit and some vegetables can cause problems, as do nuts if not thoroughly chewed. But I eat well and normally - my size is proof of that.

So, I'm very glad I have Vesuvius.  I'm not so blinkered as to pretend it wouldn't be better to have fully functioning plumbing, but to anybody suffering the pain and embarrassment of Ulcerative Colitis but frightened of having the unmentionable operation I'd say do it - have the surgery.  You won't regret it. Vesuvius, thank you for giving me back my life.

I am very happy to talk to anybody about stomas in general and ileostomies in particular. Simply e-mail me at vesuvius@billnot.com