How much rectum/colon do you have left? Did you have IBD?
I had my surgery the same day (from UC). I'm still bleeding in the 8 inches left of my colon and it's picking up as I taper off of Prednisone. I don't think I'm passing tissue though. I see some puss/mucous/blood several times a day. Occasionally I see a blood clot.
Right now I am on Pentasa. I guess it gets activated at the end of the small intestines and some of it gets absorbed into the blood stream for systemic effects - although it definitely does not work as well as it would with a normal colon. In addition, I'm using steroid enemas at night. I've been on this regime for two weeks maybe? It's not really helping.
I'm going on Humira soon...but that's because I'm suffering horribly from arthritis. As in can't walk, can't close my hands, swollen hands/feet, can't open toothpaste types of arthritis pain. The bottom bleeding is irritating to me but it does not cause me pain. But the docs think the arthritis is being cause by the active UC in my remaining rectum. Humira should help both.
If I learn of something new I will definitely pass it along. Aside from Mesalamine enemas, steroid enemas, Pentasa, or a sulfasalizides..I'm not sure what to recommend.
Drug refractory UC
Colectomy with end ileostomy August 30th, 2012 - jpouch sometime
IBD related arthritis and peristomal pyoderm gangrenosome
Pentasa (1000x4), hydrocort enemas, dermal steroid shots, 10 mgs pred and dropping!
Tried lots of drugs and diet, didn't work for me.