I was having a great time when all of a sudden it hit.  I had to make a mad rush for the bathroom.  I didn’t think I was going to make it. I rushed in the door of the bathroom and it was filled with young glamorous girls doing their make-up, checking hair and gossiping amongst themselves. With the door of the toilet closed I tried as hard as I could to hang on. I remember repeating the words over and over in my head; please, please, not here, not now. I was biting the inside of my cheeks to try and stop the inevitable from happening until everyone had left the bathroom  – there was no hope, you have no control.

You don’t need me to tell you the kind of disgusting noises that go along with chronic diarrhoea. I was horrified.  There was a short silence and then the laughter. I’ll never forget it, first slowly and then louder and louder. I felt ten years old again, scared and very very small. So you do what you have to do - you clean yourself up as best you can, wipe away the tears and wait for the place to clear out and then leave.  I remember walking out of the bathroom; a group of three girls were standing close by, just waiting to see who it was -  and again the laughter. My partner was close by and was on to that fact that something was wrong. He took my hand and I whispered to him to get me out of there. I didn’t need to say anything else.  We jumped in a cab and he handed me a tissue. I had blood on my mouth; I had bitten the inside of both my cheeks until they had bled.

Sarah

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 Crohn’s 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

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,, so I  looked like a young Bert Newton, and apart from the cosmetic side affects, 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 teenage 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 tell tale 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 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

As Kaine suffers from cerebral palsy and epilepsy, we were not strangers to hospitals and managing what some may consider one of man’s worst afflictions – cerebral palsy. Because of this condition, Kaine is paralysed down the entire left side of this body. However, both cerebral palsy and epilepsy pale into insignificance compared to Crohn’s disease and the major impact it has had on our family and way of life.

At its peak, Crohn’s disease has required up to 40 days a year in hospital either as appointments or inpatient admissions. Kaine has missed an extra 20 to 30 days of school, spending hours per day in sick bay. This has had a major affect on his education and consequently he has fallen behind greatly, and as parents, we have also needed to use all our sick and holiday leave at work.

Crohn’s disease has robbed Kaine of several years of his childhood. He has been more like an 80 year old man rather than a 10 year old boy. He has been unable to play, kick a ball, ride a bike or even walk more than a hundred metres, without requiring a rest. He carries a sick bag with him everywhere and spends several hours in the toilet per day.

Crohn’s is an insipid disease; it has slowly sucked the life out of our child. He has wasted away before our eyes.