Denial to Acceptance – My Journey with Crohn’s

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Hello, my name’s Luke and I’m a Crohn’s disease sufferer. There, I said it. Kind of feels like a weight off your shoulders when you say it out in the open like that. Suffering from a chronic illness such as Crohn’s can be like having a closet addiction. It’s not talked about openly and it’s very ugly. I was diagnosed with indeterminate Crohn’s/Colitis at the age of thirteen. Now I’m in my late 30s and I’m fairly well qualified as a Crohn’s sufferer.

Growing up with Crohn’s was challenging. Throughout high school I was on and off steroids which, as anyone who’s taken them will know, is a nightmare. Steroids cause fluid retention, giving you a nice big moon-face, soI looked like a young Bert Newton. Apart from the cosmetic side-effects, they gave me mood swings and a short attention span. Arguably the latter are pretty normal for a post-pubescent teen, but steroids always accentuated these traits for me.

For much of the last 25 years, I’ve spent a lot of the time denying I suffer from a chronic illness. Even when I’d look down and see the toilet bowl full of blood, I somehow managed to convince myself it would all go away. Without medical attention and a change in habits, it never did.

This attitude of denial has landed me in hospital on numerous occasions. One particular flare up had me spending 12 days in hospital on pethidine forpain, and fed on a saline drip to rest my intestines. By the end of my stay I weighed 45kg, not a healthy weight for a 23-year-old man.

During this stint in St Vincent’s my specialist suggested I speak to a surgeon. He explained that as an indeterminate Crohn’s/Colitis sufferer, there was a probability I’d end up with a colostomy bag for the rest of my life. There’s nothing like the threat of ‘the bag’ and the prospect of greatly curtailed romantic conquests to shock a young man out of illness. I became determined to get better and never let myself get that sick again. Although I’ve had flare ups since, I have never been that ill (touch wood).

As you grow older and a little wiser, you start to listen more to your body and identify the telltale signs of a pending flare up. Now, instead of ignoring these signs hoping it will go away, I get to my specialist immediately so he can prescribe the appropriate medications and course of action.

I’ve been lucky to have a very supportive family, great friends, and an awesome gastroenterologist. But at times you can still feel very alone with this illness. Crohn’s is not like having a broken arm or a bung knee. It’s not easily explained nor is it common knowledge like many other illnesses. No one really wants to hear about diarrhoea, blood and mucus, which is probably why it doesn’t receive much coverage in the media. It’s just not pretty.

Living with Crohn’s disease hasn’t been all bad. I’ve learned a lot about myself, things that most people take a lifetime to learn. I’m more in tune with my body and I understand how to reduce stress in my life. I’m also fortunate to have married a very supporting and caring person. She’s also a great cook which no doubt helps too!

Having a healthy diet, reducing stress in my life by meditating, relaxation and moderate exercise, listening to my body and recognising warning signs have all helped me better manage this illness. I’ve learnt to say no to people instead of saying yes, and I avoid people who manufacture stress.

It’s been two years since I’ve had a flare up, and although I’m under no illusion I won’t get crook again, a little piece of me wants to think that I’ve finally grown out of it.

Luke.

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