Elaine, that's what I think love4cats doctor is saying...that there's no need for meds if there are no symptoms. I know you wish you could use the meds...it really sucks that you can't! You seem to be a pretty rare case, though! :)
This isn't a a good thing to believe, IMO. The meds help keep the inflammation from coming back, too. So, if you stop them, there's a much higher chance that it will come back. I've heard WAY too many stories about people who quit taking the 5ASA meds b/c they felt so good, only to have the symptoms come back worse than they ever were before, and then the 5ASAs didn't work any more and they had to move on to a stronger drug. So, that's why I'll always take my 5ASAs. If I can avoid 6MP, Remicade, etc, all the better!
Fruitgirl-this is exactly what happened to me. I had a pretty crappy GI doc initially, and she didn't explain any of this kind of thing to me. I was diagnosed with a mild case, symptoms were almost gone even before diagnosis actually, was put on Colazol, ended up in remission extremely quickly, so I quit the meds. Before too long, stress came into our lives, I started having problems again, but this time the meds didn't do it. I tried at that point to manage things "naturally" and wound up in the hospital and now have been told I have a severe case (while my first GI doc told me UC didn't get worse-that it was limited to your initial diagnosis, and could get better but not worse-nitwit) and am on much stronger meds, most likely for life. Had I known, i would have stayed on the colazol, and maybe that would be the only thing I ended up having to take! Who knows...
At any rate, I wouldn't go off of the maintenance meds. I know people who can start and stop, but it didn't work that way for me, and I wouldn't wish what happened to me on anyone!
34 years old, stay at home mom of 2 girls, ages 4 and 2.5
Diagnosed in 2007
Biweekly injections for Humira clinical trial-going well so far!!
Back on Canasa temporarily because I took Biaxin for sinuses and started seeing streaks of blood again.
Also take multivitamins and milk thistle daily.