So I've managed to stop taking pred on Sunday. Still alive. Still had watery bm, once per day, no blood. Also, urgency and sensitivity are still there. On Sunday, feeling discouraged, started taking something called Enterosgel. Its an absorbent medication I know from Europe. This helped a little, and next morning bm was mushy.
Had an appointment with the GI yesterday. He kept saying that I'm doing just fine and it takes time. Said Im being treated from distal colitis (don't know why, as the symptoms seem to indicate otherwise, us I would think). Said to keep taking 2 Lialda for another week, after that increase to 3. He is afraid Lialda will make me worse. Also said to keep doing Canasa and corticosteroid suppository. And didn't mind me taking Enterosgel. Asked for Rowasa, he said no.
I have an appointment with another GI tomorrow. Will see what he tells me. Also am planning to start VSL#3.
I have made a number of posts about
my situation in the past couple of weeks... and here I go again. After an unexpected flare in early September I was prescribed 4mg pred, decreasing by 10 mg every 4 days. I am also doing nightly canasa and corticosteroid suppository in the morning. Doc prescribed 2 lialda when I started going down to 2 mg. When I started lialda last Friday, I felt better. BM was actually gaining shape, mushy or loose, once per day, no blood. However, two days ago I tapered to 10 mg pred, and sure enough, this morning watery stool returns... Im not sure if this is because lialda is not helping or I am tapering too fast. I called my doc and, of course, he is not able to see me today. Hoping he will call me back. I have an appointment on Monday... I am wondering if you guys have any advice on action I should take? How should I ask him to change my treatment plan?
I am trying to power through this, going to work every day. Its really starting to get to me though...
UPDATE: Just spoke to my GI:/ He said not to change anything and give it time. Thinks im doing fine and showing any "toxic" symptoms. Whatever that's suppose to mean... Ugh I really need to find a new doctor! Doesn't want me to increase lialda because that might aggravate symptoms... which I doubt because it initially helped.
Diagnosed in 2010 - entire colon moderately affected
2 year remission since 2014
2010 - 2012 - Asacol, Lialda, Canasa, Rowasa
2012-2014 - Canasa, Rowasa
2014-September 2016 - Canasa, Baswelia
September 4, 2016 - flare begins, 6 or more bms per day, some blood/ gi prescribes 40mg prednisone only - started september 9, 2016
Now - tapering pred - 10mg; 2 lialda, canasa
Post Edited (Katerina-b) : 9/27/2016 8:00:38 AM (GMT-6)