I’m Jamie, I’m 17 and from Dublin, Ireland. started my UC journey in January 2011 which finally ended in a diagnosis in September 2011. Currently battling a massive flare.
- Bloody stools
- unformed stools
- joint pains
- mouth ulcers
1 Year With Colitis:
So, I recently just past my year milestone, when I first realised that I was showing irregular symptoms (February 4th 2011 was when I really realised that I’d been bleeding for over 2 weeks straight every time I went to the toilet.) And really, since then a LOT has changed.
I’ve got my colitis slightly more under control, it’s about as bad as it was this time last year, but since I didn’t get really bad until about June 2011, I won’t complain too much!
I’ve been diagnosed with severe ulcerative colitis, pancolitis to be exact.
I ended up hospitalized with massive blood loss, with a hemoglobin of 3.8 and potassium of 2.6, I had a PICC line inserted and was given blood and potassium infusions, as well as high doses of IV steroids
I’ve been on only 1 course of steroids so far, and tried a lot of mesalazine based drugs (pentasa granules and tablets, salofalk granules and mezavant which is branded lialda in the states)
from Early December to Late December, Mezavant XL (Lialda) was working for me and I gained a 2 week remission, but after it’s short lived glory I went back into a flare.
My colon is starting to remind me that I don’t have mild to moderate ulcerative colitis, I have severe, and it’s not going to let me forget easily!
The doctor has suggested that I take another course of prednisone, 40mg tapering by 5mg every 5 days until the flare subsides, then if that doesn’t work the next options are Imuran, 6-MP or Methotrexate, or alternatively Humira or Remicade.
At this stage, I don’t care what I have to do, I just want to be well.
Has anyone with severe ulcerative colitis had any success with anything other than steroids and immuno-supressants?
I’m kind of reluctant to start anything like Imuran, because I’m someone who goes to a LOT of live concerts and gets in the crowd and ends up sick every single time! I could only imagine how much worse it would be if I was immuno-suppressed.
Also, if you’re on anything I mentioned, can you tell me if it’s worked for you? and if so, at what side effects? I’ve heard people say that Remicade makes their hair fall out, pred nearly left me bald last time, so I’m not looking forward to it again!
I’m sorry this was a bit all over the place, I’ll try better next time..
I took pentasa for a while, It doesn’t work at all! felt like a placebo to me. (1g 3 times a day)
Salofalk granules, the worst once daily treatment! it literally didn’t break down in my gut, i’d be crapping out little pieces of it, it was nasty! (3g 1 time a day)
Mezavant XL is a great drug, it truely does help with symptoms of colitis and even gave me a small remission! (currently on 4.8g 1 time a day, started at 3.6g)
Prednisone is a horrible drug, but it’s a miracle, it makes you feel well almost instantly, beware of nasty side effects though. (starting a 40mg course tomorrow, tapering by 5mg every 5 days)
written by “JamieIsLame”
submitted in the Colitis Venting Area