Crohn's, but not on my own: dealing with disease diagnosis

Author: G McLaughlin
Published: Jul 26 2012

"Are you happy for her to stay while I give you the news?" the consultant asked, nodding towards my girlfriend. "Yeah, thats fine!" I answered, a little too enthusiastically, as she pulled the flimsy hospital curtains around my bed, cocooning us in claustrophobic uncertainty. These were not the words that precede a diagnosis of 'a bad case of irritable bowel syndrome' - the diagnosis I was expecting - nay hoping for. I watched her lips move as if I were watching a film, and although I caught the words 'Crohn's disease', they didn't actually register with me at the time.

Having had no previous experience with any illness one might consider 'serious', and certainly with any 'diseases', I didn't know the customary reaction when presented with such news. I knew nothing about Crohn's, besides the fact that an acquaintance's partner had it, and that it had meant she had missed two years of school after diagnosis (she had been much younger than my 27 years). As the consultant listed off the statistics and the lifestyle changes - "you will absolutely have to stop smoking" - I found myself zoning out. She left, and it was just me and my girlfriend, and we both looked at eachother, and exchanged nervous jokes that neither of us could remember two minutes later, and expressed relief that it could have been much worse.

I spent the next 6 days in hospital, knowing only the four or five bullet points of information the consultant had given me, and having had no prior experience with hospital whatsoever, I found the combination of monotony, introveinous medication, lack of proper food, lack of access to either literature or online information and weakness extremely hard. I went through the motions (so to speak!), cooperated fully with the doctors, went through all the tests and did as I was told.

One thing gave me hope during this period. It was a short conversation I had with a nurse, who, on noticing the age difference between me and my 3 elderly ward-mates, asked me jovially if I was "the one with Crohn's?". Dreading the information he might give me, I said yes but it was "only suspected Crohn's". His answer changed my world. "Join the club", he said, smiling, adding "Its not that bad". He then proceeded to tell me how he was diagnosed at 15 years old (20 years ago), how he has not had a flare-up in 6 years, and how he still largely eats and drinks what he wants. "Really?!" I asked. I then proceeded to ask him about 10 questions in immediate succession, as I had been storing these up for days. When I realised that he was answering every one of them with a relaxed and logical explanation I began to smile. There was some light, and although the tunnel was long, the light seemed within my grasp for the first time. Now I know that he may be an exception and I know the statistics that say more people with the condition will require an operation than those who do not. I know these things, but I also know, since the conversation with said nurse, that I have found a massive online community of those living with Crohn's and Colitis (www.nacc.org.uk) in the UK and that I have spoken to many people who have family members who suffer from the illness. I had a problem, and for days, I had no one to talk to about it. Days; it can really eat away at you. If it weren't for the sharing of my problem, and the consequent sharing of others' experiences I have received, I would still be in the horrible 'limbo' of the unknown. That is much worse than any condition.

I was discharged from hospital two weeks ago. It feels like a lifetime. I am still finding my way, and am finishing the first course of steroid medication. I am still on the blandest of boring diets, to allow my gut to rest, and I must regularly attend review appointments. I have learnt, very quickly, that you have a choice when diagnosed with a chronic and recurring illness such as Crohn's (or any Inflammatory Bowel Disease): to see yourself as a sick person who is sometimes healthy, or as a healthy person who is sometimes sick. I am therefore at the start of a journey of discovery.

I felt real fear for the first few days in hospital. I cannot say that the fear has gone. It has however been overtaken by hope.

Please, I implore you, share your worries and concerns with others. If you have been diagnosed with a condition, look to others who have went through it for support. It is vital. Visit my newly created website http://problembox.com where you can discuss with me, and others, your own problems and find useful resources in dealing with these.

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