When I first heard that I had Crohn’s Disease – Crohns Blog – Diagnosis

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2nd January 2015

When I first heard that I had Crohn’s Disease, it was spluttered out in panic by a young student doctor. He’d accidentally let it slip while his boss; The Big Scary Properly Qualified Doctor was out of the room. To his credit he was trying to be helpful and answer my barrage of panicky questions whilst rummaging, sweaty-palmed through my medical notes. It was my own fault really. My own talent was his downfall. My investigatory skills are obviously akin to that of Sherlock Holmes and if I’d known I was quite as skilful at getting secrets out of men I wouldn’t have had to spend all those years wondering why my first boyfriend kept telling me that size doesn’t matter.

The only previous knowledge I’d had of Crohn’s had come from 5 minutes prior to my premature diagnosis, when someone had told me they knew someone who had it who had “instantly gone blind, lost all their hair and had to get one of those bag things”. Talk about scare-tactics. This was all said in the confidence that obviously Crohn’s isn’t what I have! It’s what other people have! Therefore it’s totally ok to embellish the facts. Only it wasn’t OK, because I did have it. I was one of those ‘other people’. And I was terrified.

After my clumsy diagnosis I was promptly told there are treatments for Crohn’s but that it is incurable. Then I was left to my own devices for a day or so until I could speak to my consultant who would explain everything. So what’s a woman to do when she’s had the bombshell of an incurable illness dropped on her from a great height followed by radio silence? Google it, that’s what.

Now, a good few years down the line and being a seasoned ‘professional patient’, I of course know that ‘googling’ your illness is the absolute worst thing you can do. Mainly because using sites like WebMD is akin to completing a multiple choice quiz where the answer is inevitably always DEATH. But at that point in time I was a nervous wreck, newly diseased and no idea of what the future would hold. I was getting nowhere in questioning the nurses and fobbed off by doctors at every turn. When my consultant was finally to grace me and my badly-behaved bowels with his presence I was prepared. I had my mental-list of questions at the ready and was primed to give him a piece of my mind. What actually happened was much less impressive. I burst into tears because he happened to raise his voice and then violently vomited into a sick bowl and over the bed sheets mid-sentence. GIRL POWER!

After that it took a while for me to begin to put all the pieces together. I started making notes when I was able, as the meds I was on were causing confusion and I was floating in and out of sleep with more regularity than a narcoleptic Sleeping Beauty. With the help of the more considerate doctors and nurses I began to understand a bit more about how my illness was going to affect me. Now that I knew that what was wrong wasn’t just in my head, it was actually a relief, and I was filled with determination to try and get better. I hadn’t quite gotten my head around the fact that this wasn’t going to go away, ever, but I’d realised I wasn’t going to die a thousand deaths in the foreseeable future, so one step at a time. A motto with this illness I still try to live by. That and NEVER GOOGLE IT, of course.

Thanks to Kathleen Nicholls for this Crohns blog post. Kathleen is on Twitter (@kathfantastic), has her own blog on Facebook as well as at http://crohnologicalorder.blogspot.co.uk/ and has her very own website http://kathfantastic.weebly.com where you can find more about her, further inspiring blog posts and other great content.

To celebrate the forthcoming launch of Book forCrohns, we’ve launched Blog forCrohns, featuring blogs from some of the best Crohn’s bloggers on the web as well as volunteers from the forCrohns committee. We plan to have a different topic every month in 2015 and we’d love you to contribute. Find out more here.

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