What if I'm in that 10% failure rate for jpouch and I was better off keeping my colon?
From my research there is around a 10% reversal rate not failure rate. If this is the case then there is many reasons for having a reversal without it being a "failure". I have heard some people have it reversed because of the j-pouch not meeting their expectations. On the Mayo Clinics site they don't give the percentage of people who reverse because of severe complications they just have percentages of people who get pouchitis and they show that the longer you have the j-pouch the more apt you are to get pouchitis. So after subtracting out the people who "elect" to have a reversal for personal reasons and not because of severe complications the percentage could be more like 5%.
What if I have horrible incontinence w/ jpouch?
Even if you had incontinence with UC this is not a precursor that you wil have it with the j-pouch. The incontinence with UC is normally triggered because of inflammation in the rectum. What happens is the inflammation is so bad that any waste setting against it causes your system to expel the waste to get rid of the irritation. When you have a colectomy the UC goes with the colon. Pouchitis and cuffitis can cause temporary incontinence the same way (body gets rid of waste to stop waste from causing irritation) but it is normally easily corrected with a quick round of medicines and you are back to normal. At least that is the way my GI explained it to me.
The main thing Remi is helping with right now is not having to run to the bathroom. What if I have 10+ BMs/day w/ jpouch?
From having my ileostomy I can make an assumption with hopefully some basis in fact. When I eat my ileo produces, when I don't, it don't. I would then assume that a person would have an ability to control the number of bm's and when they take place by the timing of their eating. At a minimum it should be somewhat predictable anyway. From what I understand from j-pouchers the bm's are nothing like what you have become use to. Since the waste has no ability to be real firm and such that it is more like urinating when comparing time and effort.
What if it is found that I have Crohn's after having the surgery?
Your doctor/surgeon will more then likely make sure that they feel confident that it is UC prior to proceeding. My surgeon set it up for a three step surgery, if I choose, and that gave them time to send my colon to the lab to do more checking to go along with what biopsies and such they already have. With the pathology, every test has shown UC. If they would have found mine to be Crohn's my entire colon was affected so it needed to be removed anyway.
I don't want wear the bag for the rest of my life!
I can understand your concern here. When a person, standing on the outside, thinks about a bag for the rest of their life only negative thoughts come to mind. Since I have had the bag I am tickled with it. Because of it I no longer suffer from the symptoms of UC (tired, pain, multiple trips to the restroom, incontinence, medication side effects, etc.). I have possibly had an easier time than most with adjusting to it but I actually like the ability to completely control when I empty. If I am going to a function where it might be inconvenient for hours to get to a restroom I empty just prior and I am good for a while. If I don't want a lot of output into the bag, I slow down on eating. Even if you were to have complications I would assume it would be many years before the doctors would come to the conclusion that you would need a permanent ileostomy, they would try all they could t get it to work for you as long as that is what you wanted.
With all of that said, I was looking toward j-pouch surgery when I started this process but have since started to lean toward permanent ileostomy. With the research I have done I see that the j-pouch is almost as liberating as the bag but not completely. The bag has just a little more "control" than the j-pouch and for myself I so far have not had any leakage and appliance issues (knock on wood). Now, 6 months ago I would have never even entertained the idea of having a bag but because of all that has happened with my disease since then I enjoy my bag and don't think I am going to get rid of "Leo". Each person has different circumstances that lead them to where they are, I just hope that some of what I said can ease some of the worry you have. I think your worry is stemming from putting the possibility of failure out of context.
Total Colectomy with End Ileostomy May 27th, 2008