How aggravating! Are you able to confidently assess whether your pouch is full when you are straining? Backups can occur anywhere, and are sometime hard to tell apart. Defecography is good at identifying pouch prolapse, when the act of attempting to poop causes the pouch to get in its own way. That small section of colon probably isn’t doing you any favors, and may make figuring this out more complicated. It might be time to find a more knowledgeable gastroenterologist, in any case.

@Scott F Thank you so much for your reply and insightful questions and comments, much appreciated. To answer, I have no idea if my pouch is full - how does one know? I can't feel where the back up is occuring, I just know that no matter how hard I strain, nothing (or very little) moves out and that is SO different than the years of diarrhea.

Defecograpy: What? I have had a lot of wild diagnostics in my past, but never heard of defecography before the G/I doc mentioned it as a possibility. I didn't know it was a "thing" (and after googling it - yikes - what an adventure   It is comforting to know that it is a diagnostic other people with jpouches have gone through. I also don't know what pouch prolapse is - will work on learning more about it. And yes, good suggestion, I have tried over the past 16 years to find a more knowledgeable G/I in Seattle, and thought I had one with my current doc, but apparently not. I will start pestering G/I practices again to see if I can find one with j-pouch experience. Thank you so much!

One way to work out whether the pouch is full is to try to flush it with a Medena catheter. I haven’t had to do this myself, so others might have practical advice on how to accomplish this. Since your pouchoscopy looked fine you probably don’t have a solid brick in there, and your prep must have done the job. A partial small bowel obstruction can create a general (unpleasant!) feeling of fullness, but there just won’t be much in the pouch. Straining doesn’t really help in this case (and is actively harmful), but it can feel necessary nevertheless. Your adhesion history is consistent with the possibility that adhesions are blocking things up along the small bowel, rather than difficulty with pouch emptying. Unfortunately the only “solution” to frequent or unremitting adhesion-caused obstructions is surgical cutting of those adhesions, but the surgery usually causes new adhesions and sometimes makes things worse. I hope you get some relief soon!

Hi Scott, One can't help but wonder as to the many twists and turns in the jpouch adventure has led you to learn so much. Thank you for sharing your knowledge with me/us. Now I have learned of a new device - the Medena catheter - no idea how it works. Maybe my G/I doc knows, maybe not. I see it originated in Sweden and I've always wanted to visit, but I am not engaging in local travel let alone international.

I do have a history of repeated hospitalizations due to small bowel obstructions due to adhesions, but only one SBO required surgery to resolve. The general surgeon on call that week had the unlucky job of untangling everything, redoing it and sewing me back up. As you mentioned, he warned me that every time I had any kind of abdominal cut it would produce even more scar tissue and put me at higher risk - as if I could do anything to prevent it, uh, no.

I had to use the jpouch forum "search" feature to learn why straining to produce a bowel movement is ill advised. Yikes. Now I understand. At this point I think my bet (only?) recourse is to drink a bottle of magnesium citrate every few days. That's the only thing that *really* works and it produces a very forceful flush.

I thank you for your good wishes and the sharing of your knowledge!

Another couple of angles to look at are

1. issues with poor sphincter control involving involuntary nerves (can get “hinky” as we age). Anal manometry may help identify this.

2. “Floppy pouch” and other forms of prolapse that will not show up on a scope. Defography can reveal these functional/structural issues.

Good luck. These are really difficult issues.

Jan

Supposedly opioids are also related to constipation.  If you take an opioid for pain, that could be an issue. Just a thought.

@Jan Dollar posted:

Another couple of angles to look at are

1. issues with poor sphincter control involving involuntary nerves (can get “hinky” as we age). Anal manometry may help identify this.

2. “Floppy pouch” and other forms of prolapse that will not show up on a scope. Defography can reveal these functional/structural issues.

Good luck. These are really difficult issues.

Jan

Hi Jan,

Thank you for your thoughtful response and suggestions, especially since my G/I doc has not mentioned the possibility of prolapse or floppy pouch and I surely don't know anything about either issues.  She did say she wasn't sure a defecography would show anything about jpouch function, and didn't mention anal manometry, but after my scope showed no issues with stricture, she said she would "ask around". That was 3 weeks ago, so I checked with her office today. Ouch. No appointments available through Dec 31 and they don't have the January calendar yet... so, to somewhat mis-quote Dr. Seuss, the places you'll go... on the jpouch adventure! At least I have this wonderful band of merry pranksters on board with me.

Thanks again,

Jane

@Maverick Plus I like your screen name - anything "plus" is a plus! Thank you for your suggestion about considering opiods. Fortunately (or unfortunately) I do not take opiods, but I am on a super low dose of gabapentin. It's such a low dose that it would be okay to stop taking it to see if that has any impact on my bowel function. At this point, I am willing to try anything and appreciate your suggestion.

@Seattle Jane:  I hope it helps.  I wish I could take gabapentin. It messes up my stomach.  Well wishes to you.

There have been a number of threads here that discuss pouch prolapse, fewer about anal manometry.

I am not sure how your GI office handles patient communications, but you can certainly ask for these diagnostic procedures without getting an office appointment with your GI first. I am used to email communication through a patient portal and phone/video appointments. The defography would be scheduled with the radiology department. Your GI may need to refer out for the manometry, such as a motility clinic. Some clinics have nurses that perform them

One question I have is that you mention there were no strictures at the anastomosis or anus, but you did not mention if the pouch inlet (above the pouch) was explored. Or am I misreading your first post?

I also do not see if general adhesions from your past surgery had been ruled out as causing incomplete obstructions. Have you had a GI small bowel series to look for “pinch points” in your gut?

Jan

@Jan Dollar Thanks for the head's up about the threads on this site that will explain j pouch prolapse. I will look them up and read them. I am able to do an internet search on anal manometry and find good descriptions, but zero on j-pouch or pouch prolapse.

To answer your question, I don't think anything was ruled out as far as previous adhesions are concerned, (but maybe?) and I also don't know if she looked as far up as the spot above the pouch. All she said to me when I groggily woke up from sedation was "No strictures, everything fine, no need for follow up." When I protested that my current rotating regimen of miralax, senna, dulcolax, enemas, suppositories and magnesium citrate didn't seem sustainable, she said she would ask around, maybe a defography? I was surprised I remembered the word and it is spelled just like it sounds, but fortunately the internet helped me learn about it.

As to asking via email, etc, I am not confident about self-diagnosing what the right follow up steps or diagnostics are, so I do not know what to ask for in email or e-chart communication with my doc's nursing staff. Since my G/I doc doesn't have any appt openings at this time, her staff are unable to schedule an appt, not even in 2025. But, no worries, I am getting by thanks to alllll the bottles and boxes on the pharmacy shelf for constipation remedies.  SO FUN! Yeehaw. Dealing with firehose diarrhea caused by an overrun of blastocystis hominis was worse than this, and small bowel obstructions are the worst of all since they require hospitalizations. This adventure keeps me learning and keeps me humble. All good.

Seattle Jane, do a search on this website. There must be a few discussions on pouch prolapse.