New to the site... I've been reading posts on this forum for a while and finally decided to join in the fun. thanks for having me. you can skip to the bottom if you dont want to read the novel i wrote on my experience last year
I have a question about
this legendary "remission" that everyone is talking about
. I started seeing UC symptoms about
15-16 months ago (Really bloody BM's, 10-15 daily, cramping, MAJOR urgency - stay out of my way if im making a move toward the toilet). I was a pretty regular guy before this... once or twice a day, fully formed. I was diagnosed by my GI in Aug 08 and suddenly my house became a pharmacy. i feel like I have tried everything and I just cannot get relief. first i tried colazal for about
a month/6 weeks. no joy. I was put on Asacol and 6MP for a month, no dice. couple 30MG prednisone with the asacol and 6mp and i saw some improvement. rarely would i see blood, the number of BM's reduced to about
6ish/day, but the urgency and cramping were still there. I stayed on this combo of pills for about
2 months before starting to taper off the pred. once i got down to about
10-15mg/day, Bloody BM's returned. at this point, I was starting to get really bad headaches up the left side of my head. Really bad and only the left side! i remained on the asacol/6MP after the pred was done, even though it did seemingly nothing. started another 3 month stint of pred shortly after to get the bleeding under control again and tried to taper more slowly. same thing though... at about
10-15mg/day the bleeding bung hole returned. I told my doc i couldnt handle the headaches and had to stop the asacol/6mp combo. headaches went away within a week, and i went into a mega flare a few weeks after (25-30 really bloody BM's, <1 minute urgency, I was pale, cold chills, and the pain of going was awful. it felt like i was dry-heaving out of the lower half of my body. my muscles were so sore from my abdomen down.). the doc wanted me back on prednisone, 30mg/day, and sulfazine. After a few weeks i broke out in a rash and had severe headaches again. apparently, Im allergic to sulfa drugs. doc prescribed the antibiotic Flagyl which also did nothing. so now, im on prednisone only, and have all flaring symptoms but without the blood. my doc boost me up to 60mg/day about
a week ago and it just seems like nothing will help. BTW, i became a father about
4 weeks ago to a colicky baby boy... surprisingly, the crying didnt help my symptoms either
. dont get me wrong though, i wouldnt trade my family for anything in the world.
anyhow, my real question is... what is remission? what i pictured was being back close to pre-UC form. 1-2 times a day with formed BM's, less urgency, etc. I'd even be happy with 4 times a day. is there a light at the end of the tunnel, or do i need to just temper my expectations? Im trying to avoid going with remicade/surgery, but if things dont get better, i may not have a choice. anyone have any feedback on remicade treatments?
Thanks for letting me rant. i am frustrated beyond belief with this thing...