It seems like a lifetime ago that I was first diagnosed with Crohn’s disease at the age of 20. I had never heard of it and the look on my GP's face when breaking the news to me, somehow told me that I should be more concerned than I was. 31 years later, even though I’ve been through so many ups and downs with my health, I still try to live by my father’s motto... ‘let there be no panic!’
I’m sharing my story as I think it’s important for people to know that everyone’s experience of IBD is different. I’ve never been hospitalized or required surgery, but I have suffered with joint pain, and eye inflammation and have developed osteoporosis. I’ve been in so much pain in my hips and back at times that I looked (and felt) like someone three times my age. I’ve had a few episodes of Uveitis (inflammation of the eye), another condition I should have been more worried about, but now I know to seek urgent attention if it reoccurs. Having Crohn’s means It’s difficult to always be punctual as the need (whether physically or physiologically) to use the toilet before leaving the house means there’s always five or ten minutes added on to travel time.
I was diagnosed with prostate cancer two years ago… nothing to do with Crohn’s, just a family history. What it does mean though is that if I need treatment, my options are limited as many of the usual treatments for prostate cancer have negative effects on the bowel. I also had to stop one of my Crohn’s medications which resulted in a flare-up and a whole new series of trials and errors with getting the medication right.
That’s some of the unfortunate stuff, but back to my dad’s motto. Having a lifelong illness like Crohn’s disease doesn’t have to define you. It doesn’t mean you can’t live a normal life. It just means you may have to approach things a little differently. In spite of my Crohn’s, arthritis and osteoporosis (or maybe because of them), I’ve always got on with my life. I’ve completed 5 marathons and last year completed a full-distance Ironman Triathlon. Training and competing in extreme events might seem daunting to a healthy person let alone someone who needs to know the quickest access to a toilet at any given time. For me, it’s just about getting to know my body, how soon before exercising do I need to eat and more importantly, how best to plan my toilet visits before, during and after training or events.
So Crohn’s is a pain in the backside, the joints, the bones, the eyes; but it doesn’t have to rule your life. If you’re one of the chosen ones to get the dodgy DNA, my advice is to learn to listen to your body, ride the waves and let there be no panic.