I feel strangely kind of nervous about
making an intro thread. Well, here goes nothing...
I'm a 35 yo female. I got diagnosed with Crohn's about
11 years ago. (I think
I was diagnosed in 1999, but my memory is so bad...
) I do remember how it started, though. A few days after Christmas, I got diarrhoea. Mild diarrhoea, no more than 1-2 BMs a day, but it wouldn't clear up. So a few weeks later my mum persuaded me to go to the doctor's, which I did. I got a locum doctor who was very good and did not tell me it was "only" IBS or anxiety, as many with considerably worse presenting symptoms than mine have been told. Thus it was that I got all the tests done (stool sample, colonoscopy, SBFT) and a diagnosis of Crohn's a few months later.
I was truly surprised and, in all honesty, did not really believe it. I thought that the diarrhoea would go away at some point, along with the disease. My scepticism was based on two fronts: the mildness of my symptoms and the fact that my brother had been diagnosed with Crohn's only a year or two earlier than me. I never considered the possibility of a genetic link, so at that time it seemed like an absurdity that I would get the same "serious" disease as him. Also, my brother had bloody diarrhoea with his disease, which I didn't with mine. The very words "bloody diarrhoea" made my puny non
-bloodied diarrhoea pale into insignificance.
And for the next 5-6 years my Crohn's did traverse a very mild course. The diarrhoea increased a bit in frequency; occasional cramping - that was it. I did try various mesalazine drugs during this time (Pentasa, Asacol, sulfasalazine, etc.), but all violently disagreed with me - after just one dose I'd get symptoms resembling an acute flare-up. Since I'd never had an acute flare up before, this was quite nerve-wracking and frightened me off the 5-ASA drugs permanently.
Sometime in 2005, things took a turn for the worse. But not in a typical Crohn's way, although my Crohn's symptoms also got worse. I developed fevers. Bone-chilling ones. They were only moderate grade (between 38.5 and 39C typically), but they were enough to make me feel like I was at death's door. And the fatigue that accompanied them was extreme: some days just making my way down the stairs was a major effort. These fevers were at their height in '06, continued on and off throughout '07 and finally
went away for good after a severe flare up in Jan/Feb of '08.
So that was fun. Along with the fevers, I developed anaemia. Couldn't tolerate oral iron. An attempted iron transfusion made me go into anaphylactic shock. No more iron. Also, the results of my blood tests were whacky enough for me to get a referral to a haematologist. The haematologist didn't find any underlying blood disorder, though.
In 2007, I had a colonoscopy and SBFT. I don't know what the SBFT showed, but for a rare change I did actually get the results from the colonoscopy. The report said that I had "severe, extensive" Crohn's disease of the entire colon and terminal ileum, which included ulcers everywhere. I believed I had CD then! =/ But when I saw the IBD nurse a couple of weeks later, she basically said it was worse than it looked. I should have been happier than I was at that news, but truth to tell after two years of feeling really ill I felt a bit fobbed off by it. (Although to be fair I wasn't continuously ill; I did have breaks from it.)
Medication I tried during this time was prednisolone and azathioprine. Each time I took a course of pred (3x in total since I've had CD, I think), it got rid of my symptoms for a week, then they came back. The azathioprine did nothing for 3 months, then I ended up in a flare.
2008 was easier. Diarrhoea 4-5 times a day, some abdominal discomfort after meals (esp. in the evenings after dinner), but no fevers. I was happy, healthwise.
In 2009, things got bad again, which is why I'm here
I didn't become seriously ill, but the basic Crohn's just got worse. Diarrhoea up to 10 times a day, some serious discomfort/borderline pain after eating. In early summer, I started 6-MP. I had no hopes for this whatsoever, but I mentally gave myself a target time of six months for it. To my utter surprise it began showing signs of working after two months. After 3 months I felt as close to remission as I had ever been: 1 daily BM (still diarrhoea-y, but whatever <_<) and no discomfort at all after eating. I was surprised but delighted!
The remission lasted for just long enough for me to believe it was permanent. about
a fortnight in other words. Then the usual symptoms started to slowly creep back. In December I developed what I thought was a temporary obstruction (posted about
it in another thread...) and excruciating waves of pain. Since then, I've developed regular abdominal pains (as opposed to mere discomfort
) and bloating and gurgling as fun new symptoms. I'm going to the toilet somewhat less, but what comes out is still usually pure diarrhoea. On the rare occasion I've passed anything solid, it has been narrow - about
the width of a finger. I think I have developed a stricture, although I am not sure. Got a hospital appointment in early March.
Phew. I feel braindead after this post. I hope I haven't bored you all silly with it. Before I go ahead and post, I would just like to say hello and thanks for this forum. In the last few months, I've done more reading up on Crohn's -- mostly here, but on other medical sites as well -- than I have done in all 11 years beforehand. Hello