Silent Lucidity said...
Solomon, that's a very difficult question to answer. I have read a lot of posts where people say it took 3,4,5 + years before they were happy with the pouch, but they did actually get to a point where they felt life was good and bettered an ostomy.
I am also loathe to go through more surgery, I always get an Ileus, and the creation of my pouch/proctectomy, took over two hours longer than scheduled, in order to free up all the adhesions.
This is why I regret going ahead with the pouch, as people have posted previously, it's a very complicated process to go through, and you don't end up with the same result as a pre pouch end ostomy. Also, I believe that here in the UK, it's standard practice to cut higher up and leave the pouch "in situ". Quite what problems this leaves one with, I'm not sure.
Basically, unless this gets A LOT better, I'm always going to regret it, I'll never be the same as I was before this was done.
This is why I always give an account of my experience here. People that have a well functioning end ostomy, that are happy with it, need to know that in some cases, it would be best to stick with it, I know I wish I had.
I am not sure whether I agree with your assessment of pouch excision. I agree that one does not get as good of a result as a primary end ileo, but I think that USUALLY the differences would not be significant.
Getting a permanent stoma w/ barbie butt after a jpouch failure adds the following risks:
-Nerve damage. This is possibly the scariest one, but it's binary. Either after surgery (if you are a guy) your manparts work or they don't. As far as I know, the risks are similar to initial jpouch op, which are still quite low.
-Adhesions. We all get adhesions, it's only a question of whether they cause problems or not. Reoperation definitely increases the risk for adhesion-caused complications, but most people who go through these operations do not have issues.
-Losing some terminal ileum. This actually concerns me the least. This is mostly a sunk cost since the jpouch is already made. When I had my temp ileo I had 3 jpouches less ileum than normal and I was fine, nutritionally. 1 jpouch would not significantly affect your absorption.
Ileus hurts, I had one. But it goes away after 2-3 days so I would not make that a consideration.