Lee Randall: Pigheadedness is a great medicine in my ongoing battle

Published on Friday 29 February 2008 21:45

BREAKING up's so very hard to do. Except when it's not. Fast as blinking, he clasped my hand in one of his ultra-silky paws – the softest hands of any man I've ever let touch me. Indeed, the phrase baby's bottom comes to mind, despite its being an embarrassing cliché for us both. Giving my rather rougher hand a decisive shake he said: "I don't need to see you anymore. Though, if you have a problem, you should call." Yes, of course, I murmured, backing out of the room.

And without further ado, an intense four-year relationship with my bowel surgeon came to an end. Or shall we say, a hiatus? Because I still have Crohn's disease and suspect that, like the Terminator, I'll be back, eventually, with some hideous new difficulty.

What I don't have any longer, after almost exactly three years, is my ileostomy. To think they said it couldn't be done! Over and again various doctors and this surgeon said I'd have to face facts: my back end was so badly damaged and my system so drug-resistant that the best case scenario was to cut the whole mess out and give me a permanent colostomy. "But I'm still young-ish," I'd wail. Then, more recently: "And about to hit the dating circuit again. I've already got flab to disguise – a re-routed intestine is too much to ask of the more squeamish sex."

There's a fine line between denial and positive thinking, but I do insist that I'm the healthiest sick person I know. I often don't think of myself as ill, despite the thick medical file on my wardrobe shelf.

And while I know I'm going to die – happens to us all – my body seems prepared to be as stubborn as my head. Despite an immune system compromised by drugs, I managed, with the help of strong antibiotics, to combat both C difficile and MRSA, which I contracted during this last hospital visit in December.

It's driven doctors round the twist, but I'm proud of my Bolshie refusal to submit to the ultimate op and the pigheadedness I never knew myself capable of, that kept me going from doctor to doctor until I found one I hadn't aggravated too much, who was willing to try me on a new medication. I was delighted by the look on said surgeon's face when he asked me a raft of questions about how it's all working, now that I'm no longer sending the slurry out through a bag hooked to a protruding piece of my small intestine. "You amaze me," he said.

Funnily enough, I feel incredibly guilty. Much as I hated that stoma and longed for it to disappear, I saw it as a kind of badge of honour, linking me to the thousands in Scotland and around the world who suffer from Crohn's. It's a bitch of a disease. No-one's sure what causes it or how to treat it (we all respond to different things, if we respond at all) and I've been proud, not to mention lucky, to have this venue in which to discuss what's gone wrong for me, because, by doing, so I've given a voice to everyone else stuck in the same boat.

For digestive diseases are not glamorous. Who wants to wear a brown ribbon pinned to their evening frock, or ask the likes of me to pose nude, showing off my surgical scars, much less that awkward appliance? No-one thinks twice about making colostomy bag jokes, though I've never yet heard the one about the chemotherapy wig. (Having said that, I've never stopped with the jokes, but that's my coping mechanism and, anyway, I'm entitled.)

One day I may well be back at the surgeon's going for the Full Monty. Until then, I'm keeping one eye on the research and the other on my, well, you know.