New here...my story

Hi everyone! I am so happy I found this forum, finally people who know what I'm going through!

Here's my story and what I'm currently going through:

I was diagnosed with UC in 2001 at age 15. I spent 12 days in the hospital and up until December was in remission. I went 7 years with no flare and now I can't seem to get out of this one! I refuse to go on Prednisone b/c of the same reasons everyone else doesn't want to. The side effects were so bad for me when I was on it 7 years ago that I told my gastro that I will not go on it unless absolutely necessary. I have been to see him every 3 weeks since Jan, each time trying or adding something new. It started with Lialda, which I'm pretty sure made my symptoms worse. Then back to Pentasa, then adding Cortenemas, and, as of yesterday adding Entocort. I asked to be put on it in hopes it will do the trick. He was very happy I asked and even laughed and said "You have definitely expressed your reservations about steriods."

This flare has been so tough and the cramps that have started since I began the Cortenemas have been so bad. It's nice to come here and read that other people know what it's like, because to someone without UC it's as if we can just go on with our lives, and it's hard to explain what the pain is like.

So glad I found you guys!

Don't listen to supersaw.....his logic is skewed....must be the pain deluding judgement.


Continue with your first-line med regimen for now. You could have requested the 5ASA enemas (Rowasa / Salofalk / Asacol / Pentasa...depending on where you live).

Did you recently have a c-scope to determine the severity of your UC?  Where is it..limited or throughout?

welcome to the forum, by the way.

quincy

Hello there. Looks like you are getting the equilivent of pred up the rear anyway, without the systemic effects. It's always better to treat directly with the enemas like you are doing, rather than take the scenic route, lol. Hopefully you come out of this flare soon.

Yeah Prednisone always helps me when I'm real bad. I always go as long as I can before I have to take it because it's hard on the body. A miracle drug for me would be Prednisone with no side effects at all. Right now I'm taking the rectal meds and they are allaying the symptoms of my current flare. I'll be seeing the doc on the 31st, to see if I can stop Azathioprine because it's not working at all.

     Prednisone is the only drug that helps me achieve remission.  Not happy when I have to take it and neither is my GI doctor, but sometimes you just gotta do what ya gotta do.  The 6MP seems to be doing its job. Not happy about taking that either.  I developed osteoporosis from the prednisone too.  Feeling well since Nov...so, keeping my fingers crossed.

Thanks for all the replies guys! I'm not sure exactly where my colitis is located, but its farther down my rectum. It's been since 2002 since I had a colonoscopy and the Dr. doesn't want to do another until I'm out of this flare. Prednisone for me is a final resort, if everything else has failed and I'm on the verge of something drastic. I'm hoping the Entocort will do the trick. I started it yesterday and already feel somewhat better today and have noticed significantly fewer trips to the bathroom!! The Dr. at first suggested the enemas twice a day, but with being a teacher and having to leave the house at 6:30 AM, I just don't think that's going to happen right now. I have been somewhat trying the sunflower seeds and spinach, but probably not strictly enough for it to make a difference. My boyfriend goes with me to all my appointments and his response to the news meds was "So the enemas are supposed to work from the bottom up, and the Entocort and Pentasa from the top down. Sounds foolproof." HA...if only this disease was foolproof!