Going back to my old GI

suebear said...
Pam,

The only reason to try Remicade again is if they suspect you have Crohn's disease. I have never heard of a jpouch patient going back on Remicade for treatment of the jpouch? I thought you posted that the doctors didn't believe you had Crohn's, so why would they consider Remicade as a post surgery treatment?

Sue

I don't know. My surgeon and GI spoke on the phone and that was the only suggestion the GI had. I haven't seen him yet. This is not my surgeon suggesting this. My surgeon just told me that the GI didn't have many ideas. I don't know that he will actually have me go on Remicade. I'm worried he will want to up the Prednisone for a "short time" and it will end up being like he did before---steadily increasing the dose to where i could never get off it

From what your doctors say, they lack connections to brainstorming gastros. It seems that your case is complicated to a point where the "top gun" GIs should discuss it at their joint meetings, which are like academic round tables. The most experienced GIs usually teach in medical schools and hash over complicated cases together. It's the way they compare ideas to decide what alternative or untried treatments exist that could help a patient in trouble. I once watched the process on Medical Crossfire Website; it was really fascinating & reassuring to see/hear how extensively four top gastros consulted. Given your insurance situation, I'm wondering how you could get that kind of consultation. Is there a CCFA branch near you? They might have info. on professional forums in that area or nearby, which might be resources for your GI to consult about your situation. Continuing best wishes. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)

     Pam, where did you have your surgery?  You probably posted it but I forget.