I finally managed to get an appt. with a doctor at the University of Chicago. Not my first choice, but I really wanted to see someone before my extended vacation next month so I took whatever was first available. Overall I was happy with him, he was very professional (a nice change from my current GI) and sounded experienced despite his relatively young age. Plan to keep him. Though in a year I will move and have to find a new doc, but at least for now I feel like I finally have someone trustworthy.
Since going off of exclusive EN my discomfort level has been generally mild but consistent. If I press down pretty hard where the TI is it feels tender so I know something is going on. I understand that living off the cans exclusively, forever, is not realistic and a half-and-half approach combining food and EN wasn't doing enough, though my bloodwork looks good.
The doc said what I am doing is OK, but thought I could feel better on Entocort. He also though it might help put off an obstruction/surgery, though I have not had any obstruction type symptoms it does sit in the back of my mind. I have inflammation and narrowing at the TI but no evidence of scarring/stricture thus far. He did not want to do a scope or SBFT for a while so it may be some time before I know if I have a real stricture.
It's been a year since my liver issues from a supposedly safe drug, and I know Entocort should not have liver complications. So even though I'm still a bit frightened, I'm going to do it. I plan on keeping up my regiment of supplements and still want to get at least 500-1000 calories/day from the cans. Hoping for no/few side-effects. I will fill the script tonight.
For anyone who takes/took Entocort, did you start at the 3-pill dose right away, or work up to it over a few days?
My insurance does not provide prescription coverage. What is the cost you pay? I was going to try to fill it at Sam's Club, hoping it might be a little cheaper there.
July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Enteral Nutrition, Omega-3 (Flax Oil and Fish Oil), VSL#3, Vitamin E