My Colitis Experience:
I had my first UC flare in July ’08 (ended up in the ER on vacation) and was diagnosed in early ’09.
My disease is moderate-severe, left-sided and also in my rectum (nice, right?!).
Since ’08, I’ve had several major flares and my condition continues to be unstable. I’m going through a flare as I write and in the past 7 days I’ve spent a night in the Emergency Room, had my 4th colonoscopy, missed a week of work, gone almost 3 full days on a clear-liquid diet, and as anyone with UC knows, have had incredible amounts of pain.
My doctor wants to put me back on prednisone. I am strongly opposed to going back on the steroid because I was already on it for 3 1/2 months earlier this year to try to contain my last flare. It didn’t work…but I did gain 10 lbs and suffered many other side effects. My doctor has said that it’s the only thing to quickly contain such an intense flare, but it didn’t help my last one (which lasted for about 8 months), and the long-lasting effects of prednisone are dangerous. Aside from the prednisonse recommendation, I have to have more bloodwork/tests to determine if my doctor wants to either increase my current dose of 6MP or change my treatment altogether by putting me on Remicade. I’d rather increase my 6MP…while going on the 6MP initially scared me, Remicade scares me even more.
I am at my wit’s end. This disease has stolen so much from me in the last few years…I’ve missed out on quite a bit of living and spent many days (upon days) in bed. There are times (like this week) when leaving my apartment and driving myself to the store is a huge feat. I feel 90…and I’m in my early 30′s.
As anyone who has UC knows, this can be incredibly debilitating. Even when not in a flare, my bones and joints ache at times so badly it hurts to sit, the fatigue is overwhelming, and the inflammation has spread to my bones and eyes.
I’m looking for ANYTHING that anyone has done that worked or provided some relief. Anything from medications to diet to alternative therapies. I’m open to anything.
I started out taking Pentasa and then Lialda. I was switched to Colazal a couple of years ago because I felt nauseous on the first two medications. I have to take a total of 9 Colazal a day. I was taken off of it for a month and a half because I was losing my hair, and it seemed that was the cause. With the onset of my current flare, I was put back on it.
Earlier this year, I was put on 6 MP (similar to Imuran) to take in addition to the Colazal because I had a flare that wouldn’t stop. So right now, the Colazal and 6 MP are my maintenance drugs. I have not noticed any major side effects so far from the 6MP.
I’ve also been prescribed prednisone (which didn’t help), Bentyl (just to help with cramping…which it seems to), and both steriod and Rowasa enemas. The Rowasa enemas actually seem to be helping me right now (knock on wood).
written by Christine
Submitted in the Colitis Venting Area