Hi, I had my J Pouch surgery (one-step) two years ago this December. My reason for the surgery was a bit different from most...slow transit dysfunction ( would go weeks without any movement). At first I was going on average five or six times daily but in the last week I am lucky to have one. My stomach is extremely distended (look four months pregnant), no nausea or vomiting but when I eat I feel cramping right at the belly button (some "pinching") and at some point will move...a poor description but not sure how else to describe. My doctor has planned to do a pouchoscopy next week but looking for any suggestions in the interim. has anyone had this? Thank you in advance, M

Sure sounds like an obstruction, but based on your history, it could just as well be the same motility disorder that brought you to colectomy in the first place. I presume you've had imaging studies to rule out a mechanical obstruction from adhesions? Have you tried Reglan or similar to move things along, or laxatives like Miralax or lactulose?

Jan

I agree with Jan, it sounds like an obstruction. I'd suggest drinking grape juice or if salads make you "go" to eat a salad. I hope you are feeling better soon.

My gastro asked that we do pouchoscopy before CAT scan/imaging even though I prefer the latter. Reglan wasn't helping so I have taken Miralax and seem to get some relief but not nearly enough to resolve bloating/discomfort. I have had horrible gas pain onto of it. Grape juice is typically my go-to but even that doesn't cut it. Will doing the pouchoscopy allow them to remove the obstruction? He mentioned it may be a stricture --- would that cause similar symptoms? Thank you for responding...hard to explain to those that haven't gone through this. m

SloanNYC,
Just wanted to let you know that I also started to have some pain above my belly button about 6 weeks ago. I of course treated it as obstruction and it went away, but then I started to have it more often. One night it didn't go away for hours and pain was very intense that I couldn't move much. I headed to ER, they did xrays but by the time I can back to my ER room, I had a couple of BM and I felt fine. I was released, but pain came back more and more frequently. 3 weeks later I ended up in ER again. This time I was admitted, my surgeon ran all kind of tests (barium xray series + CT scan + xrays + pouchscopy under sedation + endoscopy) but found nothing wrong. I was released after 7 days with no absolute answer as to why I was having so much pain. Pain still comes back every now and then but it's not that bad. The final but not confirmed diagnosed by my surgeon was that I have no obstruction, rather missfucntion of pouch which causes stool to back up to my small bowel and that's how I get pain in my stomach above belly button. For some reason I am not convinced. I am telling you so you may keep this in back of your mind that pain is not always from obstruction.

Thank you very much. I had the pouchoscopy today and apparently there is no stricture or blockage. It may be an adhesion/mechanical problem that is causing food to get "hung up" around the belly button. Before the procedure he felt my stomach...right side fine (I hear gurgling) but left side full/distended (zero noise). Hopefully will figure out what is causing this by week end but like you, aggravated and uncomfortable. Will update on Friday after the CT scan. Thanks again.

Unfortunately, adhesions are elusive and often are diagnosed by elimination of everything else, since they often will not show up on any imaging. In the end, exploratory laparotomy and release of adhesions is what is needed. The Catch-22 is that more surgery often leads to more adhesions...and that is why it is the last resort.

Jan

Jan,
What about scar tissues on the inner lining of intestines? Do they show up on any imaging? It could be scar tissues causing partial blockage and pain.
Thanks!

Would any of you post how your adhesions &/or scars were found without opening you up? I had a barium, awful crap to drink, a few weeks ago and there looks to be nothing going on inside that should be causing my pain. The radiologist said it might be scar tissue. The pain comes when I have more food in my system - but not a whole lot. Since all I had was barium in there, there was no food in my system, could it be it bulges or something when food is in there? I had incisional hernia surgery for a big hernia (C/R surgeons words). I'm in the process of ordering my past medical records from all of my tests, as if I'll see something they didn't. I get some Belly button pain from time to time as well.

Scars inside the intestine would be a stricture and would only occur where the intestine was cut (the anal attachment, the pouch, or the site of the ileostomy). If elsewhere, more likely this is a Crohn's diagnosis. It may not show up on imaging unless the stricture is very constricting.

Adhesions occur outside the intestines and can cause pinching and "hang ups" of the gut thatcome and go. These are more elusive.

Jan

Thanks Jan
Elusive hang-ups sounds like a good explaination and one not verifiable without surgery.

So I had the CT w IV contrast --- Dr stated that it looks like an adhesion causing hang up. Obviously surgery is not something I am pushing for but if this has been going on fir weeks without relief, is that the only option for resolving? Obv with more surgery likely to have more adhesions in the future...

SloanNYC,

Would the adhesions be easy to get to surgery wise?

I had a big abcess but it was just under my incision, easy to get to. While I thought it was horrible there are a lot of others here that have had them in horrible places to get to requiring drains.

I hope you are feeling better soon.

Surgeon was out today so trying to get in to see him tomorrow. My gastro said should be able to take care of laparoscopically ---- in instances where not as easy to get to, how long does it take to recover? And how long is typical? thank you for all your input. No one understands except those who have gone through it.

Met with surgeon today --- I can either wait it out or have cut however, risk of puncturing something on way in is possible. I'm not sure what to do--- liquid diet help? Any recommendations?