I am new to this forum and I do not know if there is etiquette or not. I have already posted two topics in 2 days so someone please let know if I am abusing my time here. I have been actively dealing with UC/CD for a little over 8 years and this is the first time I have been in a forum like this but I am at my wits end and need to talk to some people who "get me" and you seem like the right audience.
As I have mentioned in my prior posts, I was misdiagnosed in 2002 with UC, when it was Crohn's all along. I had my entire colon, save about 2 inches at the rectum removed in April of 2002. I had a temporary illeostomy for 2 months while my internal pouch "healed". The internal pouch was reconnected to the rectum in late July of 2002.
I went back to my GI today to discuss alternatives to Entocort which is doing basically nothing for me except give me mood swings and a fluttering feeling in my chest (Asacol did nothing either). Meanwhile, I am taking the browns to the superbowl upwards of 15 times a day (worse at night).
First - can anyone recommend a GI doctor in the Northern Virginia area? I feel like my current GI is just guessing at this point. We are rotating the same meds in different combinations with no real answers as to why I continue to have flare ups and can not seem to get them under control. Today he wanted to put me back on 500mg of Flagyl along with Mesalamine Rectal Suspension enema's to see if it had any effect. I don't believe in experimenting with antibiotics because the more you use them, the less effective they become, and this is a ridiculously powerful antibiotic to be guessing with.
Second - My doctor is taking me off of the 9mg Entocort regimen and replacing that with the Mesalamine Rectal Suspension enema's because I have responded to them well in the past. I know when I was on a very high dose of Prednisone (300 and 600mg) in the hospital after my colon was removed that I "crashed" because they took me off of the steroid too quickly. Can I expect ay of the same "crash" type symptoms going from 9mg of Entocort to zero?
Third - My doctor wants me to start using Questran along with the Mesalamine. I have never heard/of this Questran before, apparently it is supposed to make my stools more solid and thus go less often, has anyone had any success with it? I am currently using Lomotil, is Questran better?
Fourth - I feel like I am losing confidence in my GI at this point. Should I see someone else? Georgetown Hospital seems to have a good GI program...
36 years old, Married, 4 kids
Diagnosed in 1999 with Ulcerative Colitis / Colon removed on 2002 (Internal Pouch) / Re-diagnosed with Crohn's in 2007