Ileostomy Reversal Experiences and Advice Needed

Hi,

  I had C.diff for over 4 years and had tried every medication that was avaliable, I had 2 fecal transplants, and it was starting to effect other parts of my health. My kidneys were only functioning in the 70%s and I was retaining over 20 lbs of water, I couldnt sleep, I couldnt go out, I was constantly on the toliet. I had seen many different GI specialists and Colo-Rectal surgeons and they had me tested for other things just to make sure they werent taking me colon out and going to find out I had some auto-immune disease and taking the colon out didnt help at all. Well I had my colon out on May 11 2012 and after 6 months so in early November I can have a reversal, has anyone ever had one? Any suggestions?

Thanks so much

Hi, I can't really help you with reversal because I've decided to keep my ileostomy permanently. C. Diff is what brought me to the hospital 4 years ago. It had already eaten my colon and large intestine, and I was given the choice: die by the 3rd day if you do nothing, or wind up with an ileostomy. C. Diff was already pumping through my system, and even with surgery, they couldn't give me more than a 5% chance of surviving the exploratory surgery to see just how much of my intestine and other organs were affected. I was in ICU for 6 months, then another month in rehab to relearn eating, walking, sitting up, gaining some strength, and caring for my new ostomy. I had lost a total of 35 lbs and was weak as a kitten. Vancomycin, by port, was the only thing that worked for the C. Diff - then I got MRSA and a Stage IV staph infection, too, from being hospitalized. Nurses/doctors had to wear hazmat suits when visiting me. I was a mess. I also was given the option of having it reversed within the first 6 months after the exploratory/ileostomy surgeries and opted not to do it. My body had already been through too much with the exploratory, hernia repair surgeries, and I didn't want to subject myself to another major surgery. I don't think my 13" abdominal scar could take one more upset! I'm sure you will get a lot of positives from people who have success after reversal. My research left me very skeptical due to most people complaining about non-stop diarrhea the "regular way" and wound up on the toilet a lot with very red and sore butts that constantly needed attention because of being irritated all of the time. I have a life with the ileostomy and I didn't want to take a chance of the reversal putting me on the toilet 24/7 where I'd not have a life. I've even heard that some people with reversal (on this site) had so much trouble with their constant diarrhea after reversal that they opted to go back to their ileostomy again. Remember that if you don't have a colon, then the output is always going to be liquid and no longer normal. Wishing you tons of positive feedback and go where your heart tells you to go. Best of luck as you decide what to do.

A reversal does seem scary at first, but it can be done. Just don't have any expectation in terms of speed. Recovery is slow and you will want it to be fast. My medical situation was very different then most on this site. Those with diseases seem to have the hardest time because of the impact of the medication, chemo and the general condition of their colon is compromised. Mine was healthy in comparison and so although recovery was a bit slow, I'm close to normal. Normal enough be thrilled. Just go slow with food, drink lotsa water and relax. The pain will from the surgery, not the reconnection. Best wishes!