My name is Bob, although everyone over at the UC board calls me Shrek-Chewbacca (because I am 6'9"tall and hairy from my eyebrows to my toes! hehe).
I have had UC for 10 years now, and was in remicade full remission in 07 for about 8 months. Otherwise, I just managed. I am 50, and also a diabetic.
Last year I had surgery for something caused Charkot Disease (from steroid use - not the diabetes actually) which is a form of Osteoporosis of the bones of the feet and lower legs - they disintegrate. I had surgery in March and of course had to stop the remicade in January for thqat. Needless to say the flare came back with a vengence - never worse. Since I had both legs surgically fused and stabilized with artificial bones, joints, rods and bolts - I was hospitalized for about 7 months. During that time, I had MRSA complication in one foot requiring tissue transplantation and 7 more surgeries - very very painful. But the worse part was the UC - and needing an aide to help me with a bedpan 20+ times a day. Needless to say that didn't work out too well given the shortage of nursing aides. That was the worst part of the surgery.
Now I have been back on remi, but in some cases, once stopped, it doesn't work again - that seems to be my case. And I am looking at four more leg surgeries this year which will make me go off it again anyway.
So, it is time to say goodbye to my diseased colon. My GI has recommended a total colectomy and removal of the rectum (or is it just sown shut?). Anyway - he doesn't recommend j pouch because he is convinced I will have pouchitis with how and where my UC is.
I am getting very OK with the idea of a total. but I need to hear from you all what your experience has been - from the prep - to the time you spent in the hospital, the pain endured - and the recovery. In short, I need a primer. I have read some the earlier posts here and they have helped - but if I may impose on you to help me get very calm by knowinig what I will endure.
I was a moderator on UC for a couple of years - and we had a great group - So many new people over there and so mnay oldsters like myself seem to be moving on from that board - hopefully the new drugs are working in most cases.
I hope you will welcome me here. My first appt. with the surgeon is in 2 weeks.
With love to all here,