Posted 6/28/2011 7:04 PM (GMT -6)
I hope >_>
I saw the consultant last week. More memorable than the appointment was the parking. In a miserly attempt to avoid paying the extortionate hospital parking fees, I sought a parking spot on a nearby residential street. Nightmare. Went round once, twice, parked, walked up street, mum spotted a better space, drove to the better space, found out it was too small to get back into, went back to the original space. Should've been 45 minutes or so early, instead of which I had to rush to avoid being late - upon which I was told the clinic was running an hour late. My mum was furious with me by this time because I had lost my temper in the car and she went into full self-righteous mode. Cue a chain reaction of huffiness on both sides, resulting in a massive row in reception. Whoops. Way to make a fantastic impression at a new hospital.
The hour wait was more like an hour and a half, but I actually didn't care: was glad of the break. For the second time, I was totally braindead when I saw the consultant: just couldn't wake up, not even after a large cup of black coffee. I felt like leaning back in the chair and nodding off right in front of him :-/
Anyhow, contrary to my pessimistic predictions, my previous hospital had sent on my test results from last year. Those showed I have Crohn's throughout the whole large bowel (pan-Crohn's, the doc called it) and 10cm of the terminal ileum. I was a bit surprised to hear that: 10cm is hardly anything. Feels like with that little small bowel involvement, I only have Crohn's colitis, really.
Up-to-date blood tests show that I have moderate inflammation going on, apparently. No nutritional deficiencies, not even of iron. Bit surprised about the iron as well, since I'd had a low haemoglobin for years. The two iron transfusions of last year must have really done their job.
On the basis of the above, plus the fact I hadn't responded well to azathioprine or 6MP, the consultant said he was going to try Remicade. Really surprised by that: was expecting to be put on methotrexate before I ever got put on Remicade, but apparently not. For once my long history of reacting badly to all kinds of drugs may have worked in my favour, as the consultant did say that Remicade had fewer side effects and was generally better tolerated. He also pointed out that Remicade cost £1000 per infusion, but meh. I'm worth it <_<.
Oh yeah, I nearly forgot :-/ That's the good news. The bad news is I seem to be on the verge of developing another chronic disease, hypothyroidism. The level of something called anti-TPO was off the chart, apparently. Googled, and found TPO was an enzyme needed to produce thyroid hormones. Not too hard to figure out what anti- TPO does. As best as I can make out, it seems to be an autoimmune process. The consultant said it had no relation to Crohn's, but not sure I totally buy that. Two (probable if not definite) autoimmune processes going on. Hmm....
Bleurgh. I have already rambled on for long enough and am tiring, so shall try to wrap this up. Going on Remicade isn't a simple affair, that's for sure. Had to have a chest x-ray (to check for chest infections, I think). Then I had to go to the hospital again the next day to get a certain blood test done by 10am (except I got in at 8:30am because the stupid IBD nurse told me the test had to be done by 9am, latest. The consultant had said 10am. She told me he was wrong, but it turned out he was right and she was wrong). Then I had to fill in a form and send it back. Done all that. Now I just wait. Probably be a month to two months before I start treatment, fingers crossed.
So, that's about it, I think... I shall probably end up rueing the day I ever said these words, but so far I'm actually fairly - dread word :-/ - happy with the new hospital. Only time will tell, but the consultant seems to be competent and a pleasant fellow on top of it. And it's nice to have somebody you can call whenever you're worried (the IBD nurse in this case). I did feel a bit bad, though, when the consultant said that the previous hospital had run all the right tests, making his job easier. I muttered something about I may have "overreacted" a little bit >_>. But when he said I could go back to the previous hospital for the Remicade treatment, if I wanted, I instantly said I'd rather stay here. Which was true. I have some bad memories of that place.
My god, I have rambled. Sorry folks. Shall click on 'submit' now :p