I still remember being told I had Crohns Disease. I can remember it quite vividly actually. I'd just been admitted to hospital (again) with agonising abdominal pain, my partner was with me and a young trainee doctor came into my room and asked me a novels worth of medical questions. In the process, inadvertently letting slip something about the possibility of Crohns. He looked instantly embarrassed and left in a hurry.
I was a bit shell shocked. I'd gone from having appendicitis to having an incurable disease I'd never even heard of. We were both a bit panicked but tried to stay calm. I was doped up on painkillers at this point so couldn't take much in, and would explain why I remember feeling pretty laid back at the time..
An older doctor came in with the student 'let-slip' doctor and spoke to me for a few minutes. For some reason I remember him being at the other end of the room and I was paranoid and confused by this- Did he think he would catch whatever this mystery illness is that I may or may not have? Is it contagious?
He again mentioned his suspicions I may have Crohns Disease, gave a VERY brief outline as to what it is, which all went completely over my head almost instantly, as it was so baffling and quick I couldn't comprehend any other than that word "disease". I do however remember feelings of relief and even validation in amongst the confusion and nerves, that something was being done at last, and that it wasn't all in my mind and that there IS something wrong with me!
After this initial meeting however, the next few days were spent preparing me to have my appendix out, which was of course, entirely unnecessary. I felt upset and worried at the seeming lack of communication and reluctance for anyone to make a definite decision on my diagnosis. I was told constantly I'd need more tests and procedures but not why - I wanted to know what exactly they suspected or what they were trying to rule out. To be honest it's just as well the young doctor had let the Crohns theory slip, as it stuck in my mind and gave me something to cling to.
The worst part however was the hope it had been appendicitis after all. If it was I would've had my nasty appendix out and could carry on with my life as if nothing had happened. Instead I was saddled with a life-long disease with no cure.
Most of all, I remember the sheer feeling of relief that now that we knew what was wrong we could start to get it under control. I now realise that's going to be a long and arduous journey, but I'm fuelled up and ready to go.
This post was written as part if NHBPM - 30 health posts in 30 days.
My friend was in a similar situation years before her diagnosis. They removed her appendix and some time later her gall bladder. Eventually they realized it was Crohn's and put her through unnecessary surgery.
ReplyDeleteThats awful Julie. You have to place all your trust in the doctors and sometimes they get it wrong - so hard, especially when you have no clue what's wrong yourself!
ReplyDeleteHope she is doing well now :)