Ther are only a few of us here with J-pouches. Is that what you have? I have had mine for 10 years with one redo due to a stuck capsule camera in 2004.
And yes, when I have an ocassional Crohn's pane in the LRQ, I 'm just like eveyone else, even though my entire colin has been removed.
I know, it doesn't make sense.
Retired male in late 60's. Perforated Colon in 92. Diagnosed as Ulcerative Colitis in 93. Uncontrolled flareup in 97 dictated J-pouch surgery. 04 Capsule endoscopy diagnosed as Crohns not UC. Emergency surgery in 05 to remove lodged camera capsule. Biopsies positively diagnosed Crohns at that time. 12/06 Unsucessfully tried Naltrexone(LDN). 2/07 developed scleritis of the eye, tearing and detaching the retina. Treated with high doses of Prednisone. 6/07 Thought eye was healing and started taking Entocort counting on the residual (non-systemic portion) as treating the eye. Wrong. In October eye was not stabilized. 11/07 Started Remicade to try and reduce the ocular inflamation of the Scleritis since I had been requiring more and more Prednisone to keep the eye quiet. 12/07, retina tares and detaches again so it's still not working. Now blind in that eye. 1/08 now taking Remicade monthly with no real progress treating inflamed eye. Vision still <20/200. Inflamation starting to show up in good eye. I haven't given up yet, but it doesn't look promising.
Married with 4 grandkids.