mjs1980...i get what you mean when you said you got sick of taking pills every day when you started feeling better, but seriously thats the worse thing you can do, for me at least. Whenever I did that my UC came back with a vengence...
I was diagnosed at 25 with proctitis and had it easily under control and in remission with just Asacol, like you I felt better and i stopped taking my meds. Something triggered a flare ( i think it was a combo of quitting smoking and getting preggers) but now it had spread and it took a lot longer to get under control with Asacol, Rowasa enemas, and Canasa supps again...started feeling better, got lax on my meds....
Quit smoking again ended up in the hospital, diagnosed with Pancolitis and have been stuck in some varying degree of severity for about 2.5 years now...was put on Prednisone multiple times, Lialda, then Apriso, Rowasa, Canasa, 6mp...ended up recently needing a blood transfusion cuz i was bleeding so much and so anemic, finally my Dr and I discussed going on Remicaid since nothing else was working...quite frankly it terrifies me BUT after the first infusion (i've had only 2 so far) I feel almost 100% normal. Which has been a loooong time coming. The only side effect i feel so far from the Remi is that im exhausted at the end of the day on infusion day and the day after.
Moral of my story is: take your meds..if you can get into remission with the safer, less side effect drugs...do it. This is something we're going to have for life and we need to learn to live with it and that means being proactive in taking our meds even when we're feeling better.
-- Allison :)
33 years old
Lialda 4.8g daily
Prednisone 20mg tapering
Remicade started 11/19/2012
Renew Life Intestinal Bowel Support, Ultimate Flora Ultra Potent 100 Billion