Hi SolomonSeal
Although I don't have a J pouch yet, I have no problems with my ileostomy and I know I would be happy to go back to it if I get a pouch and it fails.
Can I ask, if you go back to the ileostomy, how much small bowel will you lose? Will your stoma be higher and the output more liquid?
Thanks
Megan x
If you feel that way about your ileo, I would strongly suggest that you do not get a j-pouch. You will run a significant risk of having a lower quality of life than what you have today and you may cause yourself lifelong problems. The only reason to get a pouch is if you want to avoid an ileostomy.
I do NOT want my pouch to fail. I know that chances are removal would be successful and I would be fine after a few months... but the risks are still so terrifying and I know that the post-op recovery will be very long and hard. And the adhesions, which no body will be able to predict whether I will have issues with later or not.
PLEASE PLEASE PLEASE anybody reading this, do not let anyone, surgeon or not, tell you that you can casually try a jpouch and go back to an ileostomy if it's not OK.
To answer the question about pouch removal, from studies I read the average loss of ileum is ~5cm for original end ileostomy and between 45-65 cm for pouch excision. People who have Crohn's or some other additional reason to remove more I saw lost up to ~100cm. Most responsible surgeons will not remove more small intestine than the jpouch unless there is a special reason. Output will always be more liquid after any intestine is removed. The stoma will normally be placed where you want along your abdomen (if the surgeon can reach), but it will be "higher up" on the intestine because you lost some to the failed j pouch...
Personally, I do not think the intestinal loss would be a big issue for me. My loop ileo diverted my jpouch +50cm ileum and I was completely fine with it. There are people who spend more intestine on their jpouches and are still fine.
Pouchomarx, I am studying abroad (intended for a year) as my surgeon told me that I should be feeling great 2 months after takedown. I have stayed in contact with my surgeon's team, and my GI back home. I saw a local GI too. So far I'm just being told to try the antibiotics and do another scope soon. Also look for improvements at the 6month point. If this does not improve soon I may return stateside and see Shen.
KS, I may try Xifaxin. So far cipro/flagyl helped but I feel like the effect is lessening after 1 week.