I am sure that this has been brought up before on this forum but I am a newbie and I thought I would start a new thread.
I have relatively recently been diagnosed with Ulcerative Colitis (September 2008).
My initial symptoms started in July, with on and off again diarrhea, finally gave in and saw my Primary Care as it was more on and less off and blood started to show up. She recommended I see a GI specialist but the one she suggested was booked up at that point for about 3 months. A couple of weeks later, I couldn't take it anymore, pain in my belly, always bloody diarrhea. I spent a week in the hospital, discharged when I was really no better on Prednisone 40 mgs 2 x per day and Asacol 800 mg 3 x per day and melasamine enemas. I went back to the hospital a week later as I continued to get worse.
They told me that I was basically headed to the Operating Room. Finally someone suggested Remicaide. Per my GI doctor, Remicaide "saved my colon" Well, I did the initial infusion as an inpatient, then 2 weeks later, and the whole ramp-up thing. I was doing well. A little over 2 months ago I was at the 6 week mark and due for another infusion at the 8 week mark. I started bleeding again, this time it was not diarrhea, but blood on the outside of my stool and on the paper when I wiped. At the same time I got a sinus infection. My Primary Care prescribed a Z-pack.
Well, with the Z-pack, my sinus infection went away, and so did the blood in my stool. I mentioned this to my GI doc and he said it just so decided to clear up on its own. I found that hard to believe. All the meds in the world didn't clear it up the previous time and then it just went away on its own?...has anyone else had antibiotics and a flare ended as a result?
Well, this time about 3 weeks ago another "flare" at the 6 week mark of my Remicaide. This time bloody diarrhea. My doctor got me in for an infusion early (only by about 2 days was as quick as he could get me in). His plan then was to get me on an every 6 weeks schedule. Diarrhea went away but I am still bleeding. Now he told me to start taking Asacol 1200 mgs 3 x per day. He wants me to meet with the colorectal surgeon. I made an appointment for a second opinion, one week from tomorrow.
My questions to the group are:
1. Has anyone tried the Specific Carbohydrate Diet. (GI doc says diet doesn't matter, I find it hard to believe after all that I've read online and common sense, what you eat travels through your colon.)
2. Has anyone been on Remicaide every 6 weeks? I can't seem to find any info about doing that.
3. Would you give up this early and see the surgeon? From what I read, people live on different meds and have good times and bad times for years without a colectomy.
I am just so frustrated!
Diagnosed with UC September 2008
Just started taking Asacol 1200 mgs 3 x per day 5/7/2009
Biotin 5 mg
Vitamin D 2,000 IU per day
Calcium 1500 mg per day