Medications while in Remission

After a (looong) year and a half in a severe flare I think that I'm finally in remission! Yipee! I thank the folks on this board for helping me to get there and making me a stronger advocate with my doctor. He never recommended rectal meds and only reluctantly prescribed them after I insisted that I felt they would help. What do you know - they put me into remission after only a two week course. Nothing else in my diet/treatment regimen had changed so I feel confident in assigning my remission status to the Hydrocort.

Anyway, as with most of us, I'm interested in coming off the meds that I'm currently on (Azathioprine and Asacol). When I mentioned this to my doctor he told me a scary precautionary tail of a patient my age (34) that came off of meds and ended up having to have his colon removed and a colostomy bag for the rest of his life. Hmmm...Yes that did scare me into remaining on the meds, but I guess I just don't understand why I couldn't come off of them (gradually, of course) and if symptoms started to reemerge simply go back onto them again. Why would going off of meds suddenly make my condition potentially much worse? Do I need to seek advice from another doctor?

Thanks for all of the wonderful help and support that this board provides. In my worst days, it's been a lifeline. In my best days, an inspiration to see how others are bravely coping with this disease.

'precautionary tale' LOL I guess the former was a freudian slip!

The rectal meds treated the last part to heal and the first to flare. The oral meds treat the colon. You have pancolitis. Why would you want to gamble with remission, especially after a year and a half of a 'severe flare". You are not cured, just in remission. Stay on your maitenance meds, please...

I'm a scientist too (horticulturist), and it doesn't make a lot of sense to me, either, why a medication wouldn't work again. Maybe it's just coincidence. But, I've heard the same story from enough people that I'm not willing to chance it, coincidence or not.

And I do think that we're "well" when we're in remission; we're just not cured. There's a difference, IMO. I certainly feel well despite having to pop a few pills each morning. If the pill burden is getting to you, consider switching from Asacol to Apriso or Lialda, because both of them are taken once a day. I was on Asacol and chose to switch to Apriso because I had trouble remembering my noon dose (and, it was pretty awkward taking it when I was out to lunch with colleagues). Studies suggest that a big reason for repeat flares is non-compliance with taking medication, and that reducing pill burden increases compliance.

Yea I'm one of the ones that stopped taking meds. I figured I had a "mild" form of left sided colitis and didn't need the medicines.
Well I stayed in remission for about two years after graduating high school then last year in Sept started the worse flare up ever. 8 months later and none of the medications they have put me on has got me back in remission. So now I'm going in for surgery.

I do keep thinking back to the first month of the flare up, and that is when I lost most of my weight have haven't been able to gain it back (from about 180 to 128lbs). I should have gone to the hospital and they would have probably started me on some strong doses of pred and other meds and I would have been in remission again. But I waited. Oh well. The ostomy bags are temporary now if you do the jpouch surgery.
Personally I'm happy I'm going for the surgery. I will be able to say that I no longer have UC and I'm cured from it. :)