Ok so some of you may know my long story of misery and some may not but anyway Hello my family!! You all are literally like family now since you are the only ones I can speak with on my health issues because my family doesn't know or understand! Well it will be a year in September that my ostomy was reversed and my good old new plumbing took its birth!! The first 6 months have been pure freaking hell!! I had butt burn, bleeding, pain, incontinence all day lots of it like whole bowel movements on myself, and no matter if my poop is hard, soft or runny I have to strain to empty my j pouch!! This made me want to just say give me back the damn bag!! My colorectal surgeon told me to give it at least a year before making a decision for permanent ostomy..so that's what I'm doing but just recently like the last few weeks all of a sudden I had no pain no BM no butt burn or anything just like I was normal again..it scared me shitless����literally I had no poop for a week and two days..I enjoyed my life for those days but I just knew it was coming back so I never got too happy..well today it started I felt cramping and I said o snap here we go but once I got into the bathroom I just had a really big bowel movement..no straining or butt burn..for a minute I though ok maybe things are returning to normal but a few hours later the spasms started along with incontinence and burning bleeding!! Dammit!! Now I'm so confused is this ever going to get better?? Also I've been having movements in my stomach similar to that of a fetus movement..I have 3 kids so I know! Anyway I chalked it up to being gas since I'd been passing a butt load of it..lol butt load���� but this has been going on now for about 3 weeks so I bought a preggo test it came back negative but these movements are getting stronger and I can actually see my stomach moving if I ever catch it while my shirt is up...anybody ever experienced this?? And anybody ever after a year with j pouch things are back to normal or at least better!!?? Please respond! My colorectal surgeon says it's nothing more he can do..all my test from defecogram, cat scan, Mri, rectal exam, endoscopy are all normal!! I dk what to do but I'm tired of this I'm only 28 my fiance has been great about everything but my wedding date is September 16 I set it that way thinking by then my life with the pouch would have gotten better but time us ticking and I'm still experiencing these awful episodes that would make my already stressful wedding day a lot worse..please help!!
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Hi, Brit. I'm sorry you're going through this! I think you may have a couple of things going on. The simplest one to try, if you haven't already, is to treat this like pouchitis and see if a course of Cipro helps. When it works it often works very quickly. Pouchitis isn't always obvious on visual inspection with a scope.
I'd guess that you may also have significant adhesions, because of your bowel perforation. These aren't really pouch-related, but they can make the passage of stuff through the small intestine a bit complicated, with multiple obstacles for it to get past. These obstacles can act like partial obstructions and drive you crazy. Adhesions are a problem because they are hard to treat successfully - surgery to cut them sometimes just causes more, but there are a number of folks here who've been helped by adhesion surgery.
The gas is also not pouch-related, and could be a sign of small intestinal bacterial overgrowth (SIBO). If that's the case for you, a couple of months of an antibiotic like doxycycline is often used ( that's what worked for me).
I use psyllium (Metamucil) twice a day, and have since my surgery. I honestly don't know if it will help you, but it's inexpensive and easy to try.
If you're still getting your care from a surgeon, I'd suggest finding a pouch-knowledgeable gastroenterologist instead.
Good luck!
Scott is right about there sounds like multiple problems. I am just adding my bit about adhesions. I had extensive lysing of my adhesions and recognize part of your problems as adhesion related. The feeling of a baby moving could be due to your waste getting held up by adhesions/scarring. I have 2 kids and know what you mean.
Please get a second opinion and I would start with a good GI.