Meds not responding-infection? flare? losing hope

I was dx'd with Proctitis and possible Proctosigmoiditis 2 years ago. I never responded to topical meds, though my GI doc is insistent on using them.

I started a flare up about 2.5 months ago (my first since initial flare). I increased my Lialda from 2-4 pills a day with no effect. I never had diarrhea with my prior flare or this one. When the Lialda didnt work they added hydrocortisone supps 60mg twice a day- no effect. They D/C'd that and tried UCERIS 9mg x8 weeks. It has been 3 weeks and no change. about a week and a half ago I started on Hydrocortisone Enemas 100mg once a day. So now I take the following daily: Lialda 4 tabs, UCERIS 9mg and Hydrocortisone Enema 100mg It seems everyday I am worse and worse. I pass blood and foul smelling mucus multiple times a day (I could prob do it at any given moment).

My GI dr tried telling me i may have c-diff. I am a nurse, I know that you do not have C-Diff if you have formed stools, which I occasionally do. In general, they are soft as the worst. Now they want me to to do stool culture to rule out infection. I'm starting to lose hope-feeling like they are scraping for other answers instead of trying to treat the disease. Has anyone had a flare up similar to this? Has anyone had an infection? What worked for you? Feeling hopeless.

I havent tried it yet. Im actually waiting for a call back from my dr. I told him I was open to it. Im really nervous about it though. Im very small 105lbs and it looks like they start dosing at 40mg daily.

Ulcerative colitis can progress aggressively in extent and severity during the first 5 years. It's possible lialda may no longer be enough for you, might need stronger medications like immunosuppressive medications (imuran, aza, 6mp).

HopingForTheBest said...
I havent tried it yet. Im actually waiting for a call back from my dr. I told him I was open to it. Im really nervous about it though. Im very small 105lbs and it looks like they start dosing at 40mg daily.

I was on 60mg when I was down to 93lbs. You should be fine.

I also second what iPoop said. I started out with a mild/moderate case of left-sided colitis. Only symptoms were blood and mucus, and some urgency. Within 7 months, my UC spread to my entire colon and became pretty severe. Don't be afraid of stronger medications. Remicade was a life saver for me.