Posted 10/31/2014 4:11 AM (GMT 0)
Hey everyone! I've been reading posts on this forum for a couple months now and decided I should introduce myself and maybe get some advice because I don't really know what else I should do but watch and wait.
I was diagnosed in August 2014 with UC, but originally had symptoms in March when I got diagnosed with c. diff. I got put on flagyl for that and most of my symptoms went away. I still had 5+ BMs a day, but they were no longer bloody and down from the 30/day. I thought I was cured until June when all of a sudden I was back to having 20+ bloody BMs a day. I got retested for c.diff multiple times, all which came back negative, but the clinic doctors put me on more flagyl which I was on for 2 months, since it sort of helped. I was in the process of moving states and then going back to college, so I didn't get the chance to go to a GI until late August after the semester started.
I got my colonoscopy done a week later, had the diagnosis of UC and was put on Lialda 4.8g/day, which did absolutely nothing and was beyond expensive ($800 after insurance). A week later he put me on prednisone 35mg/day and told me to start tapering 5mg every week. I had a followup a couple weeks later when I was on 25mg. The pred helped a little, I went from 30+ BMs a day to 20+, which is definitely an improvement, but hasn't really helped me feel any better. My GI wanted me to start Humira but my insurance wouldn't let me until I tried Imuran first (both of which have terrifying potential side effects, but I'm willing to try just about anything to have a decent night's sleep).
I had to medically withdraw from school because I couldn't get more than one hour of sleep without waking up to run to the bathroom. I also had to walk to school, which even though it was only a couple blocks away, I would almost faint getting there and have almost had accidents on the way and have had accidents going home.
I started Imuran 4 days ago and I know it is supposed to take a couple months before it really starts working, and I have to start tapering my pred again, I stayed at 25mg longer than my GI wanted, but when I went down to 20mg I started getting bad abdominal pain every night, so I went back up to 25mg. He says he won't prescribe me any more pred though, so I'm tapering again. I'm supposed to be going back to school in January, but since I won't know if the Imuran is even going to work until about then, if not later, and I have to register soon or I won't get any classes I need (I'm a Junior and classes are in high demand).
I don't really know what I'm trying to get out of this post, maybe some form of optimism because I seem to have lost all of mine. I know I've been having awful mood swings because of the pred, which is just making everything seem worse. I start crying in public over nothing and I have terrible anxiety about leaving my house, even though I've only had 2 accidents outside of my house and so many I stopped keeping track when I was home (I've had 2 in the past 24 hours, although that's significantly more than normal).
Anyway, some advice or just general positvity would be great.