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Update*

I had a scope done (Monday) and everything looks "perfect", pouch is fine. So I tried to introduce a tiny bit of food, soft mushy food, and I'm still not having regular BMs. I'm bloated, only passing liquid, I feel like I have a burp stuck somewhere between my stomach and throat, and there's discomfort / pain / pressure just below my ribs. So, something else entirely?? I'm miserable and about to have a meltdown. I've tried GasX, Zantac and Pepto - nothing helps.

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Hi, I'm new here. I guess I'll start with a little history and then go into what's wrong.

I have FAP and was somewhat diagnosed at 2, parental neglect to get screened at a proper age, at 16 I had my first colonoscopy and a month later my colon came out. 3 months to the day after that I had my reversal. I was young and naive, I never did my homework on FAP or j-pouch. I had the information that was given to me back then. Now, just over 15 years later (and in a different province to where I had my surgeries), I feel lost. Something isn't right and I don't know what it is. I've gone 15 years with no problems, very limited trigger foods - not to brag here, but I think I've had it pretty good from some of the stories I've read.

I feel like I can't empty my pouch all the way when I go to the bathroom. I recently had a CT scan for issues with my ovaries, and they told me that my pouch looks fine, says there's no sign of pouchitis. I've been a couple weeks of tying my best to avoid the more solid foods, doesn't seem to be helping. My GP suggested lactulose twice a day for a couple of days, all it did was change consistancy. Feeling very bloated and now the butt burn is starting. I'm.so.hungry. There's this almost constant urge to go.

I'm waiting on my routine scopes - I have polyps in my esophagus, so I get two for one scopes, yay me. But there has  been a mix up with switching specialist (that I wasn't aware of). I try to find the good, try to stay positive, but I'm slowing going from "this will / has to pass soon" to "what if something is wrong?!"

I'm sorry if I rambled on, I'm finding it hard to get my words out. If you have any suggestions I would love to hear them. Also sorry if this is the wrong place.

TIA,

M

Last edited by MS
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If you're positive nothing's wrong with the pouch I think it may be a blockage or a partial one. I havent had it so far with the pouch. But there's this friend of mine who had them 4-5 times in 8 years with her pouch. All she would do is fast for the entire day or till the time she feels back to normal. She drinks lots of fluids too during this time. Maybe you can give it a shot and see if it works.

Incomplete emptying is pretty unpleasant. It was worth a try to soften up your stool, and I’m sorry it didn’t help. There are things that a CT scan can’t identify. Strictures are a common cause, and pretty easy to see on pouchoscopy. It sounds like you haven’t had a recent pouchoscopy yet? Another possible cause of incomplete emptying is pouch prolapse. You don’t report some of the common sensations associated with prolapse, but it’s still possible. If your pouchoscopy comes back normal then a test called a defecogram can be done to explore the possibility of prolapse. Good luck!

With taking lactulose for 4 days, I assumed it would have helped soften whatever it is up. But sadly it has been basically no change.

I normally have a pouchoscopy every 12-18 months, it has now been 24. My last one everything was clear. See, I've never heard of or even thought of a prolapse pouch - I try very hard not to WebMD myself. Some days are better than others, today I'm crampy and have pains in the tailbone area. I hardly ate anything yesterday, just lots of water and other liquids. Doesn't help that it has been mentioned time and time again that my doctors think I have a high pain tolerance, sometimes it takes me days to even realise something hurts / is bothering me.

I never eat peels or skins when I can help it, and wouldn't even consider nuts at a time like this. I've only had liquids today, not even a smoothie. Broth is the closest thing to "food" I've had. Still zero improvement with movements.

At least I finally got in for a scope on Monday. Hopefully an answer with a solution.

Honestly, I never got an answer/I'm still looking for one. The past two years have been hell. I had a scope done of my pouch, everything looked good. GI doc says that it's possible my pouch was being "lazy". I had an upper scope done and they found a polyp, later removed, then ended back in hospital with pancreatitis. Found out I have Endometriosis and have been getting injections for the past 18 months. Also one horrible stomach ulcer in there too. Throughout all of this I have had minor improvements with my pouch/BM's. I'm 34, was healthy and active up to about 2 years ago. Every damn day feels like something new. Sorry I cant give you a positive answer.

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