Hi everyone,
This is the first time I've tried asking about this kind of thing online so bear with me if I write too much or too little. I'm really at the end of my rope with UC and I've been through so many doctors now without getting anywhere. I was diagnosed a little over four years ago. Since then I have been on Prednisone with dosage starting at 40 mg/day then tapering down until I eventually start having symptoms again and have to jump back up. I'm also on 3.6 g/day of Asacol, one 4 g/day mensalamine enema retained overnight, and 1 g/day Folic Acid. My colitis is limited to the left side and I have been told by every single doctor I work with that it is minor and should quickly go into remission. My diet is clean, I eat literally nothing besides grilled/baked chicken, fish, and a healthy mix of vegetables. I drink two gallons of water daily. As of about two months ago I have stopped consuming alcohol entirely.
My last doctor tried putting me on Imuran, which I had a terrible reaction to. My symptoms got ten times worse, by 3 pm they were so bad I felt like I was drinking Trilyte. I was having crazy mood swings, memory loss. I had a night where I had a vodka rocks with dinner and completely blacked out after just one drink. We did a blood test and I had heavy liver toxicity from it so he took me off of it and we tried going back to Prednisone and starting a slow taper. I was finally down to 9 mg/day and started seeing a new doctor. This guy decided to put me on Methotrexate, 7.5 mg/week since I was starting to have some minor symptoms at the lower Prednisone dose and a dexa scan revealed that four years of Prednisone had caused bone deterioration. Two weeks later I was in full flare-up. I assumed the Methotrexate caused it and stopped taking it. It's been about three weeks since and I'm still in a horrible flare-up. I've bumped my Prednisone back to 40 mg/day and it's not controlling it at all. I wake up with symptoms at night, can barely sleep. In the morning I force down breakfast between sprints to the restroom so I can get the Prednisone down. Once I take it I'm alright until late afternoon/early evening. At this point I might as well be on colonoscopy prep because my day is done. HEAVY bleeding as well, more than I'm used to, and the urgency is far more than I remember from my last flare. I've been on 40 mg/day for about seven days now and I'm still not seeing improvement. I'm told Remicade is the next step but I'm terrified I'll be allergic like I was to Imuran and Methotrexate.
Has anyone out there had an experience similar to mine? I'm losing my mind here. I'm in my twenties and I have to skip several classes a week at college due to symptoms. I'm supposed to sit for the LSAT on October 6th and I honestly don't think I can make it through a four hour exam! This is ruining my life. If anyone has any advice or help or ANYTHING please let me know. I'm really fed up with doctors telling me how minor this is. It doesn't feel minor!
I know that was a long read... thanks if you stuck it out with me.
Cheers.
EDIT: I forgot to add, at one point my doctor tried switching me from Asacol to Apriso. This led to a nasty flare-up, but within a week of switching back to Asacol and 40 mg/day of Prednisone everything went back to normal.
This is the first time I've tried asking about this kind of thing online so bear with me if I write too much or too little. I'm really at the end of my rope with UC and I've been through so many doctors now without getting anywhere. I was diagnosed a little over four years ago. Since then I have been on Prednisone with dosage starting at 40 mg/day then tapering down until I eventually start having symptoms again and have to jump back up. I'm also on 3.6 g/day of Asacol, one 4 g/day mensalamine enema retained overnight, and 1 g/day Folic Acid. My colitis is limited to the left side and I have been told by every single doctor I work with that it is minor and should quickly go into remission. My diet is clean, I eat literally nothing besides grilled/baked chicken, fish, and a healthy mix of vegetables. I drink two gallons of water daily. As of about two months ago I have stopped consuming alcohol entirely.
My last doctor tried putting me on Imuran, which I had a terrible reaction to. My symptoms got ten times worse, by 3 pm they were so bad I felt like I was drinking Trilyte. I was having crazy mood swings, memory loss. I had a night where I had a vodka rocks with dinner and completely blacked out after just one drink. We did a blood test and I had heavy liver toxicity from it so he took me off of it and we tried going back to Prednisone and starting a slow taper. I was finally down to 9 mg/day and started seeing a new doctor. This guy decided to put me on Methotrexate, 7.5 mg/week since I was starting to have some minor symptoms at the lower Prednisone dose and a dexa scan revealed that four years of Prednisone had caused bone deterioration. Two weeks later I was in full flare-up. I assumed the Methotrexate caused it and stopped taking it. It's been about three weeks since and I'm still in a horrible flare-up. I've bumped my Prednisone back to 40 mg/day and it's not controlling it at all. I wake up with symptoms at night, can barely sleep. In the morning I force down breakfast between sprints to the restroom so I can get the Prednisone down. Once I take it I'm alright until late afternoon/early evening. At this point I might as well be on colonoscopy prep because my day is done. HEAVY bleeding as well, more than I'm used to, and the urgency is far more than I remember from my last flare. I've been on 40 mg/day for about seven days now and I'm still not seeing improvement. I'm told Remicade is the next step but I'm terrified I'll be allergic like I was to Imuran and Methotrexate.
Has anyone out there had an experience similar to mine? I'm losing my mind here. I'm in my twenties and I have to skip several classes a week at college due to symptoms. I'm supposed to sit for the LSAT on October 6th and I honestly don't think I can make it through a four hour exam! This is ruining my life. If anyone has any advice or help or ANYTHING please let me know. I'm really fed up with doctors telling me how minor this is. It doesn't feel minor!
I know that was a long read... thanks if you stuck it out with me.
Cheers.
EDIT: I forgot to add, at one point my doctor tried switching me from Asacol to Apriso. This led to a nasty flare-up, but within a week of switching back to Asacol and 40 mg/day of Prednisone everything went back to normal.
