Andrew’s story – living with Crohn’s

"Weeks, months, of drugs and bed and depression..."

I’d been having tummy issues for a number of years. I put it down to diet and stress. When I finally relented and went to my GP, I was horrified. You want to put what where?! You want me to have a camera up there?! Still, by this time, I was so unwell that I went along with every test meekly. The crisis, inasmuch as there was one, came a couple of months later, six weeks prior to my colonoscopy. I had been bleeding for weeks. Vomiting. Endless diarrhoea. Pain. So, so much pain. I lost weight. I missed work. My wife found me one night passed out on the bathroom floor in a pool of stuff and insisted that I speak to my GP to get my colonoscopy appointment expedited.

Post-colonoscopy, I wasn’t much better, but the diarrhoea had stopped. And I put on LOTS of weight. Steroids will do that. An all-consuming false hunger that can never be satisfied. Weeks, months, of drugs and bed and depression. The never-ending cycle of medications and side effects, feeling all the while that I was about to be pounced upon by the unseen disease which had come into my life so unexpectedly. I likened those first few months to walking down a dark street, knowing that I was going to be mugged at some point, but not knowing exactly when. I became aware of everything I put into my body and noted its effect on me.

It wasn’t only the disease I was battling. I fought and fought to be listened to at my local clinic. This was no collaborative, person-centred patient experience.

Eventually they stumbled across a medical regimen that worked for me and my life started again. I could tolerate my medication. I could eat properly. I got back to a reasonably normal weight. And I started to feel better. Slowly, I got used to the idea that the Crohn’s was there and always would be, but that it didn’t control me.

Now, I’m fifteen years post-diagnosis. I now have a great GI team (thank you, Forth Valley Royal Hospital). I have an amazing person-centred consultant who realises that she is the expert in the ‘ology’ but I am the expert on my body.

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