Hi Everyone,
I'm looking for some advice. My story is UC diagnosis at age 11, J-Pouch surgery in one stage at age 17, a revision at age 33 because the j-pouch had grown a side chamber, and now at age 38, I'm being told that there is a stricture where the small bowel meets the j-pouch and that the pouch itself has somehow shrunken and can't hold anything, which explains why I'm having like 25-30 movements a day, everything I eat makes my gut upset and makes me go, and I'm lacking energy of course. I've also had chronic pouchitis forever. After being on antibiotics for like 19 years, they don't seem to do much anymore. My surgeon laid out the options. He said, I can do a revision, but since the pouch has already sort of shape-shifted twice, it'd likely do it again, that this current pouch is not likely to succeed. He said he could do a redo, but then I'd be dealing with less intestine, he might get in there and see it's a no-go with the way my blood vessels and nerves or something are and seems to be a lot of risks involved with taking out the old pouch and creating a new one from scratch, of which a greater chance of sexual dysfunction scares the heck out of me. Then, there is the k-pouch, the issues would mostly be the same as he thinks they'd be with revising/redoing a j-pouch and there maybe some additional ones too. And finally, the permanent ileostomy, he seemed to suggest, would have the least risk and greatest chance of success. I've been unwell for several years now and gradually getting worse. I've scheduled the surgery for right after Thanksgiving, but I just want to make sure I'm doing the right thing. I've barely been able to do my job, have no social life anymore, hardly sleep and feel lousy most of the time. If this is the best option, which right now it's sounding like, I'll embrace it. I just want to know if people agree it is or if they have any advice?
I'm looking for some advice. My story is UC diagnosis at age 11, J-Pouch surgery in one stage at age 17, a revision at age 33 because the j-pouch had grown a side chamber, and now at age 38, I'm being told that there is a stricture where the small bowel meets the j-pouch and that the pouch itself has somehow shrunken and can't hold anything, which explains why I'm having like 25-30 movements a day, everything I eat makes my gut upset and makes me go, and I'm lacking energy of course. I've also had chronic pouchitis forever. After being on antibiotics for like 19 years, they don't seem to do much anymore. My surgeon laid out the options. He said, I can do a revision, but since the pouch has already sort of shape-shifted twice, it'd likely do it again, that this current pouch is not likely to succeed. He said he could do a redo, but then I'd be dealing with less intestine, he might get in there and see it's a no-go with the way my blood vessels and nerves or something are and seems to be a lot of risks involved with taking out the old pouch and creating a new one from scratch, of which a greater chance of sexual dysfunction scares the heck out of me. Then, there is the k-pouch, the issues would mostly be the same as he thinks they'd be with revising/redoing a j-pouch and there maybe some additional ones too. And finally, the permanent ileostomy, he seemed to suggest, would have the least risk and greatest chance of success. I've been unwell for several years now and gradually getting worse. I've scheduled the surgery for right after Thanksgiving, but I just want to make sure I'm doing the right thing. I've barely been able to do my job, have no social life anymore, hardly sleep and feel lousy most of the time. If this is the best option, which right now it's sounding like, I'll embrace it. I just want to know if people agree it is or if they have any advice?
It's so easy to empty, no worries. No worries about any problems with having a pouch.
