Hi, I’m Christine, and I was diagnosed with UC in Feb. 09, with about 6-7 months of symptoms before the diagnosis. I’ve written about my full story before( “Wanting a New Colon For Christmas“, so I don’t want to bore you, but as you all know, it’s been quite the roller coaster :/
OK, I have two questions that may be unrelated to each other. When I’m having a flare, I get the full sha-bang: horrible urgency, going to the bathroom up to 20x’s a day, bloody diarrhea, joint pain, extreme fatigue, etc.
Back in Sept. 2011, I was taking Colazal (3 pills, 3x a day) which I had been on since my diagnosis, in addition to 6MP (also called mercaptopurine) which I’d been taking for close to year to due a flare that wouldn’t let up. However, I had started to notice some dramatic hair loss (even my hair dresser noticed)…no bald spots, but major thinning. My gastro thought the Colazal might be the culprit and because I had been flare-free for about 6 months, they thought that I could gradually taper off the Colazal and continue to use the 6MP for maintanence. BAAAAAD idea. By the time I tapered off the med, and a month or so passed Colazal-free, I landed in the ER with the worst and most sudden flare that I’ve ever had. By that time, my hair had started to grow back…I had baby sprouts all over my head and as ridiculous as it sounds, I was thrilled. However, this flare wasn’t letting up, I missed 8 straight days of work, had to have another colonoscopy (my 4th), and things were bad. So, I had to go back on the Colazal. I didn’t even care, I was in so much pain. But now, about 7 months after re-starting the drug, I think my hair is falling out again :( I’m so upset, and am wondering if anyone else has experienced this. If so , did you find anything that helped? I tried the supplement Biotin, with limited success. ANY ideas are greatly appreciated!
My 2nd question has to do with the fact that for the past 3 weeks, I have had an intense burning in my lower stomach (like where my belly button is). I called my gastro, and Prilosec was suggested. I have an appointment with them in 2 weeks in case it’s still happening. I’m on day 4 of Prilosec (it says on the box that most people experience relief in 1-4 days) and it is no better. It lasts pretty much 24-7 and keeps me up at night. Has anyone with UC also had anything like this? It’s a completely different pain than UC, but the burning is intense. It’s also usually followed by diarrhea.
Where I’d like to be in 1 year:
To be flare-free for a full year and able to go off even some of my meds. To not waste time laying around the house because I feel like crap (I’ve had to do waaaaaay to much of that!). To not have colitis be a thought in my mind every day, worrying that it will once again rear it’s ugly head. That would all be wonderful~
written by Christine
submitted in the colitis venting area