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DENIAL TO ACCEPTANCE - MY JOURNEY

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 indeed. I was diagnosed with indeterminate Crohn’s/Colitis at the age of thirteen. Now at the age of 34, 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, and 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 21 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 for pain 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 to me 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 trot along to my specialist immediately so he can prescribe the appropriate medications and course of action.

I’ve been lucky to have had 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 this illness 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 2 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.

FROM SETBACKS TO SUCCESS

Click here to listen to an inspirational story from David Garrad, a US Pro quarterback who successfully has returned to the professional sport and has not allowed Crohn’s Disease to keep him from his game.

HISTORY REPEATS - A MOTHER'S SORROW

I am lying beside my baby at 3am. I can hear his rapid breathing and feel his racing heart. He seems more relaxed when I am here or maybe it just makes me feel better. My baby, my first born is 10 years old. Five days ago he was diagnosed with Ulcerative Colitis.

What started out as constipation 10 weeks ago has gradually progressed to where we are today. I have watched my boy become paler and more lethargic. He walks with shoulders stooped as he tries to guard his sore abdomen. He goes to the toilet over 12 times a day to pass diarrhoea and blood. He is anaemic and off his food. He cannot concentrate in school.

Five days ago he underwent a gastroscopy and colonoscopy to tell us what in my heart and head I already knew. He has a form of Inflammatory Bowel Disease (IBD) and there is nothing I can do about it. I can only watch and remember. I remember a girl with similar symptoms just a little bit older than him. I remember the fear she felt and the lack of understanding in the community and medical profession about a disease process that occurred silently and deep inside. As today I watch him take a handful of tablets, I remember how that made the young girl feel all those years ago.

That girl was me, and I grew up with Crohns disease and eventually the management was major surgery. My heart breaks at the thought that I passed this onto my child, but my head knows that what matters now is the road ahead and getting on with life and praying for a cure that will take the pain and suffering away.

70,000 Australians may not be many in the grand scheme of things, but one of them is now my son and that is all that matters to me.

Jane

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