Hi Jilliane
I too was given sulfasalazine as a first into after diagnosis and its been great. ISH. Ive been on 3000mg a day and it was suggested to me that 2000mg a day was a more likely dose, but I staunchly held on that I was told 3000mg so Im sticking with 3000mg. I did quite well really I guess, Im still very new after only two years so Im not super sure, but I didnt end up back in hospital in all that time so I figure i was doing ok. I still had quite a bit of pain, but it was bearable, in that I didnt take time off work at all, but I do only work part time, so that might have helped. I also dont take time off work unless Im almost dead, which is not always a good thing!!!
The last six months or so the pain has increased enough for me to start kickin my heels and sayin something isnt quite right, and I was told to up my dosage to 4000mg a day while we look into it. Im in Australia, in the public health system, cos Im poor and cant afford health insurance, so looking into things can take a while, however, Im a patient of the head dude at the hospital, so when I start saying life is lookin pretty crappy he can usually squeeze me in for a scoping within a week.
I originally was diagnosed with crohns in the ascending, the transverse and the sigmoid colon only. My last scoping however was two days ago, and Ive now also got some serious terminal ileum action going on, with some internal hemmorids, nice!!!!! We have yet to discuss what our treatment options are from here, that is happenign next week. I am a bit nervous, Ive only had sulfasalazine, and a few steroids for a while at diagnosis, so Ive been able to stay pretty positive.
Oh, did they tell you that the sulfasalazine makes everything that comes out of you flourescent yellow?? Nah, they didnt tell me either, and the first wee after taking them had me crashing into the door on the way out of the loo after being so blinded. Its also a lot harder to know when your poopy has hit the magic clear yellow thingy they look for when doing the bowel prep for a scope, cos even your poopy can be yellow, so is your sweat, i definitely wish I had known that when wearing a new white shirt to work, and your tears also get a yellowish tinge, I now never cry with my contact lenses in...............