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I have had my J pouch for 2 years. I had a lot of complications with the surgery and had long term pouchitis straight after surgery for around 5 months but since then have had realatively little trouble and good function

 

But over the last few months it has felt like my pouch function is getting worse. I have gradually gone from going to the tiliet 6 times during the day and once at night to probably 10 durung the day and from 2 up to 4 or 5 times at night. The symptoms arent accute like when i have had pouchitis before and they come and go and it has took me a while to even realise it had gotten worse. I have urgency that comes and goes and isnt all the time, same with diarrhea. I am also now experiencing painful sores from going to the toliet a lot more i think. I rarely feel like i have emptied the pouch properly and often feel the need to go again quickly. I have a few days where it seems fine.

 

Do you think i could be experiencing a milder form of pouchitis or something else?

Thanks for any advice 

Lorna

Original Post

Another thing to consider is not getting fully empty with each “round,” which could be indicative of partial stricture at the ileoanal anastomosis line.
Quite a few folks who don’t self dilate, have to have it performed under sedation 1-2 times per year for several years until the scaring process concludes.  Not getting fully empty leads to bacterial overgrowth, likely a top cause of developing chronic pouchitis. 

Here’s another possibility. I’ve had pouchitis or cuffitis symptoms ever since takedown 2 years ago. Two weeks ago, I had a pouchoscopy and was told I have chronic cuff inflammation plus a new one: my pouch was said to be “angulated” and “flapping in the breeze.” My GI said he even had trouble scoping the top part of the pouch because it had folded over. He concluded that my frequency symptoms and nighttime leakage might be happening because of this angulation. I am now scheduled for a barium enema so the pouch position can be visualized. If a folded pouch is the reason for my symptoms, the doc said it could mean another surgery to tack the pouch in place. 

JFill,

I had pouch revision surgeries in 1998 and 2000 due to similar issues although the sensation I had was of incomplete evacuation due to the stool hitting a wall and feeling like it was blocked. Supposedly a “septum” developed in the pouch. In the surgery, a flap of pouch was stapled and I have not had a problem like that since the 2000 surgery, my last of 4 bowel surgeries related to the pouch.

Pouches enlarge after surgery and yours may have over enlarged and revision could (possibly) resolve these issues. They did with me as far as the incomplete evacuation.

Last edited by CTBarrister

CT, that feeling of "stool hitting a wall" is the reason I was told I needed pelvic floor PT, which I did for four months a year ago. It helped, but didn't completely resolve my issues. I've now had three pouchoscopys but this was the first where I was told of a structural issue. Any idea if "tacking the pouch" is another significant surgery or if it's a simple laparoscopic procedure? 

The surgery I had in 2000 to “tack the pouch” was done in Mount Sinai Hospital In NYC. It was done on an outpatient basis under General Anesthesia and no cutting. They went through my rectum with whatever tools were needed to cut, snip and tack. I was discharged the same day as the procedure. I think I took the train to NYC that day and was unaccompanied. Never had any issues after that. The surgery was done by Dr. Steven Gorfine of Manhattan Surgical Associates.

CTBarrister posted:

The surgery I had in 2000 to “tack the pouch” was done in Mount Sinai Hospital In NYC. It was done on an outpatient basis under General Anesthesia and no cutting. They went through my rectum with whatever tools were needed to cut, snip and tack. I was discharged the same day as the procedure. I think I took the train to NYC that day and was unaccompanied. Never had any issues after that. The surgery was done by Dr. Steven Gorfine of Manhattan Surgical Associates.

How would they go through rectum to tack it? wouldn't that cause a leak or a fistula by puncturing the pouch to tack it?

Pouchomarx posted:

How would they go through rectum to tack it? wouldn't that cause a leak or a fistula by puncturing the pouch to tack it?

There was a septum that developed inside the pouch.  There were 2 procedures to correct it, the first in 1998 which resulted in its re-development, and the second in 2000 which was successful. I do not know exactly what Dr. Gorfine did in the second procedure ( you would have to ask him), but he told me he stapled/pinned back the septum that developed. What I can tell you for sure is that he went through the rectum with whatever he did.  He did not cut through my skin.  It was done as an outpatient procedure.  There was no leaking, no fistula.  I think I was cautioned that I could have a little blood in my stool but I was more or less good to go right after surgery.

He did many J Pouch Revisions, and my understanding was most of them were done that way- through the rectum.  Back in the late 1980s, 1990s and early 2000s this surgical group probably did more J Pouch surgeries than any group in NYC, or perhaps even the USA for that matter. As I mentioned previously, the patriarch of this group who did my original surgery (Irwin Gelernt) did the very first K Pouch in the USA in 1970 and studied under Dr. Nils Kock, for whom the K Pouch is named.  He later pioneered the J Pouch surgery and probably did more of them than anyone before he passed away in 1996.  He was considered the best colorectal surgeon in the USA for J Pouches when I had my 2 step in 1992.

 

Last edited by CTBarrister

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