Your story sounds almost identical to mine.
I had tapered down to a low dose of prednisone, but couldn’t get completely off without the obstructive symptoms coming back. My gastro recommended surgery (laproscopic) which required going to the big city (Pittsburgh) and I reluctantly agreed. It appeared to be successful, initially. (I have virtually no memory of the first week.) I know that at some point it came apart and I developed infection. All I know is the surgeon seemed to place the blame on me for having the NG tube removed prematurely or not allowing it back. I also removed it myself when I was out of it. No one said anything about the pred being the culprit or contributor.
Anyhow, a week after the surgery, on Sunday, my surgeon’s backup had to open me up, remove some more intestine, and do an ileostomy. I had a hell of an incision and spent four weeks total in the hospital.
While home, I became dehydrated from the fast bowel transit and had to have 10 days of home saline therapy for it. After several months it slowed done. Six months after discharge I had the reversal.
This went much better. I was a little slow to regain bowel function. Almost six weeks post, I’m still going too often (ten or more times in 24 hr., up twice in the night). Taking Imodium, Benefiber, and Questron. I did have some of my colon removed when I was a child due to a lack of nerve endings (megacolon).
i havent posted on here in a while because i have been doing really well. well here is my experience.
i have crohns disease too.was diagnosed in march 2007 and was put on pred straight away. i tried to taper but my symptoms were so bad that i couldnt and got put straight back up again. my GI suggested surgery so i had the surgery in july 2007.. well i thought i was going in for a resection but i ended up having an ileostomy due to two very large abscesses eating their way through my bowel. it was a shock to wake up with an ostomy i can tell you. i got a wound infection and with being on the pred it took ages to heal and i now have a very nasty scar
well i had ileostomy for 9 months to give my bowel a good rest and i had my reversal in april this year. everything went well with the surgery i had it at 9 oclock in the morning and was up and taking myself to the toilet that night. unfortunaley it going well didnt last long and i was soon having really bad D all the time and vomiting constantly. it turns out i had caught C diff from being in the hospital. i ended up in ICU with tubes coming out of my neck and things it was awful so my recovery time from my reversal was longer than i wanted it to be. but 8 months on im now doing absolultley great! i go to the toilet probably about 2-3 times a day and its not watery.
i can eat more or less anything i want and i just feel great! i mean there will be some frequent toilet trips to begin with but it all gets better with time. your bum will probably get sore so the one bit of advice i would give is to get some good cream to soothe it. nappy rash cream is good. and like somebody said everybody is different to how their body copes with reversal surgery. my experience was a worst case senario but you have to be prepared for anything. thats why i shared my story with you but like a said worst case senario! i dont miss having the bag but i wouldnt have changed it for the world.
i wish you all the best for your reversal surgery and i really hope everything goes smoothly for you
what kind of medications u took to control ur bm's? and how does the stomach look like after stitching up the stoma?