It’s been almost 8 months now since I was diagnosed with Scleritis of the eye. I have been through the agony of 3 months of 80mg Prednisone per day and have seen my vision go from 20/20 to 20/200, back to 20/70 and now 20/200. at the same time seen my hgb go from 14 to under 10. From the numbers of BM’s per day (6-8) I have been okay as far as my Crohns and J-pouch are concerned but the anemia definitely confirms a Crohns flare-up.
Monday I meet with my Hematologist regarding iron infusions and in another week I’ll meet with my G.I. at which time I’ll ask to begin Remicade to at least treat the Crohns and hopefully also the Scleritis.
My big concern is my lack of confidence in my eye surgeon, who will just sit back and say “I need help here,” then put me back on 80mg of Prednisone, and we start all over. As for me, the pain from the eye is now covering the whole right side of my face, driving me over the edge. I’m to the point of submitting to the loss of the eye, if I could just stop the pain.
Sometime back, someone on this forum mentioned a renowned eye (retina) clinic that I would like to seek out. Plus, obviously any new ideas will be welcomed as well.
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 Eye is healing and currently taking Entocort counting on the residual (non-systemic portion) treating the eye. In October if eye is stabilized, will need cataract removal (obviously old steroid associated). Then surgey to the back of the eye to remove scare tissue caused by the detachment. The upside? Right now I only have to clean one side (lense) of my glasses.
Married with 4 grandkids.