Reply to "Would you go back to the ileostomy?"

The temp loop ileo has two openings. One that is on top of the stoma (think of it like a little volcano on your belly)  where food travels from your mouth and comes out at this part of the stoma. There is another opening at the base of the stoma which is a slight opening that is flush to your belly. That opening connects that part of your stoma with the rectal region that is no longer in use. I am having a lot of problems with mucus build up in my remaining j pouch/rectal area so mucus is actually coming out the part of my ileo that is at the base of my stoma. This discharge makes it very hard to change the appliance since some sort of fluid is always coming out and it also wears down my barrier ring quicker than it should. With this type of ileo, you need to be careful that you don’t cover the base of the stoma opening so fluid/mucus can escape if needed. I had surgery scheduled to remove the J pouch and get a permanent ileo earlier this year but developed Cryptogenic organizing pneumonia which was probably some Crohns manifestation. I had to be on a long steroid taper which was super fun. I can’t wait to get some more sick time saved up so I can finally get my J pouch removed and go permanent stom. One opening  on top of the volcano with a permanent end stom sounds a lot better than 2 openings with a temp loop stom.  Just wanted to add that I really loved my J pouch and things were awesome until they went bad when my diagnosis was changed from UC to Crohns. I would still go the J pouch route if I had to do it over today so I hope all you J pouchers out there keep going for many more decades!! 

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