This current flare up has made me start questioning my knowledge about Crohn's. Over 11 years, I have read a lot about Crohn's in addition to the invaluable information I gained from this forum. Last month, I asked my GI about a support group that he was establishing in my country and he said it's still in process. He suggested I give advice to other patients on Facebook groups which I have already been doing for years. For other patients, I seem knowledgeable.
This has been true, at least for myself, until I flared up suddenly last Thursday. On Tuesday, I saw my GI and we started talking about the possibility of going into remission. When I started to have the sudden excruciating pain, vomiting and nausea on Thursday, I got worried and texted my GI. He asked whether I had either constipation or diarrhea. When I replied in negation, he said take an antispasmodic + celebrex and wait for a day or two. He could figure out what was wrong. He knew like what you told me that it's simply Crohn's acting up. That was obvious when I saw him yesterday. He wasn't alarmed and said words that were then shocking for me: it's inflammation of your colon, this is normal, expected and will recur. Tbh, I wanted to cry but of course, I didn't. I asked him
what about Remicade, why should I flare up and he said this is an inflammation which the rifaximin round should control. I felt that I was very naïve. My GI and I always attributed the previous flare ups to stress. Now that stress has been reduced, flare ups should, in turn, decrease, too. What else about this "black box" that is called Crohn's am I not aware of? Are there any life style changes that I should try? When I got my PhD last month, I visited my GI and he ordered me not to change the restricted diet I have been eating for years. I still follow this religiously. I really want to lead a normal life but how???
GERD, perianal fistula, CD, IBS, persistent mouth ulcers & fissures
Meds: Remicade, Cortiment, Nexium, Imuran, colifoam, monthly B12 inj.
Pred 40 mg from Oct. 2010 till Jan. 2012
Previous: Mesalamine tablets & supp.
Failed:Azathioprine (generic), Methotrexate