I understand where you are coming from. I was diagnosed with ulcerative proctitis in 98 at the age of 52. After running the gamut of meds, prednisone(of course), Colazal (ten years), 6MP (seven years), rectal meds, Remicade (failed after 3rd infusion) and Humira (three months and no change), I decided to have surgery. My GI doctor did not refer me to a colorectal surgeon. Even after all those meds, he wanted to send me back over to Philly for a second consultation with a "world reknown" GI specialist. All that guy did was pat himself on the back and brag about all the articles he wrote for medical journals. So I took matters into my own hands and searched the net for a good colorectal surgeon in Philly. We live in south Jersey and I did NOT want to have the surgery over here. Too many horror stories.
I had my total colectomy with end ileostomy on June 28th by Dr. Robert Fry at Pennsylvania Hospital. He is head of colorectal surgery at the Univ of Pa. He said I made the right decision, as my rectum was badly diseased. The last two years I was prednisone dependent. It gave me osteoporosis, elevated my blood pressure so I had to take three different blood pressure meds and raised my blood glucose level so high that I had to take a pill to regulate my blood sugar. He told me at my first office appointment with him that he would not do a j-pouch on me because 1. my age and 2. extended use of prednisone. He said it would be too stressful on my system. I told him I had no problem wearing a "bag". With that settled, I made the appointment to proceed with surgery. It wasn't easy, so I won't sugar coat it for you. I had a couple of blips, but thankfully, they happened while I was still in the hospital. I believe it took me awhile to heal because of my prednisone use. However, I feel sooooooo much better now! He left my anus intact which I found most people have the anus sewn closed. His theory is there are more complications when it is sewn closed. I just let him be the judge.
I only take one blood pressure pill a day, 25 mgm of Toprol, and not sure I even need that! No other pills at all except for vitamins. Such a relief after taking 17 - 25 pills daily for the past twelve years. UGH!
Good luck to you! The permanent ileo is no problem at all.