Needing To Hear from other Old Timers

Have you been checked for an anal stricture? They can occur gradually over a long period of time.

Jan

Please don't delay getting examined. Straining that hard can cause you additional problems you'd be much better off without. Can you find a J-pouch-knowledgable gastroenterologist nearby?

I agree - it's time to get checked out. Strictures are a common complication of the pouch, and the risk for stenosis (narrowing) increases over time. Obviously having an older pouch would put you at greater risk. The good news is, most strictures do not have to be treated surgically, and you can be dilated right in the surgeon's or GI's office. You may have to do follow up "self maintenance" but this will be demonstrated to you.

Hope you get this sorted soon!

In the meantime you might get some relief if you loosen things up. You don't say whether your stool is formed or not, but it might be easier to use the toilet if you add Metamucil with meals, drink more water, add some fruit juice,...

Was the poster child for the perfect J pouch til things happened in 2012 (started feeling "off" in a GI sense that year, developed an abscess turned perianal fistula, have had strictures... ). I'm now on Humira and a steroid taper.

Definitely could be a stricture. My GI said "older" pouches (age of pouch, not patient age) are coming out with new IBD issues. No longer do they say "curative" surgery, he counsels his patients there's a 50/50 chance in the lifetime of your pouch you will have "some" issue (maybe a mild pouchitis to new dx of Crohn's or other IBD things).

My narrowing issues may likely have been related to lower inflammation and the fistula, so we are giving the biologic a chance. The Medrol is making me feel a million times better, too.

Come back and let us know how things are doing.

And FWIW, Scott mentioned some things for changing stool consistency, but the bulk Metamucil would've given me would have made it impossible to clear my pouch when I was narrowed/strictured! However, I've never needed Psyllium or things to slow me down, and the older my pouch gets, the more finicky it is, and sometimes things tend to be too thick for my liking. I occasionally take a magnesium supplement or a dose or half dose of MOM to thin things up. Magnesium is non-cramping, and the only thing I tolerate.

Yes could def be a stricture. I have had issues like this and now irrigate the pouch daily and its been amazing for me. Other people have been doing this too with much success. My pouch is 10yrs old and in the past few months was difficult to empty. While I was in hospital an ostomy nurse showed me the irrigation process and been doing it since then.

Tell us more Fosty. How does this work?

It's a simple procedure. Just small tubes that you can insert with a syringe of water. You need to lubricate the tube first then insert. It empties the pouch quite well. I was having narrowing issues and unable to empty sometimes. My surgeon who is new to me as my old one moved on was ready to reverse the pouch! She consulted with my old doc who suggested irrigation first. Thank goodness!

I got my pouch in 1992 also. I was having trouble like yours in 2008. I had narrowing/strictures of both the inflow and outflow areas of the pouch. I needed a test called a "retrograde j-pouch study" to find out what was going on. It is a test where they put liquid up your rectum into the pouch and a little beyond and take x-rays to check the functioning of the entire pouch.

I myself had to go to Mount Sinai in NYC (a very big medical facility) where they are experts in people with Crohn's, Colitis and pouches. Sometimes you need to go to a big medical facility to really find out what is going on in certain cases.

I needed an operation to correct the strictures but before I had the operation I took Miralax to make it easier to go to the bathroom and empty my pouch. The docs had me take Miralax because it is very gentle on the digestive system but does help to move things along and out of the pouch.

Good Luck,
KanagaRoe

I also got my J Pouch done at Mount Sinai Medical Center in NYC in 1992, same day as KangaRoe and by the same 2 surgeons. If I recall correctly my step 2 was done the same day as her step 1.

My issues in these 22 years have been a little different - chronic pouchitis for 20 years treatable with rotating antibiotics. I have remained fairly consistent in my responsiveness to antibiotic treatment with the exception of a 2 year period 2011-2012 when my diet was poorly controlled.

I had similar symptoms to yours in 1998 and had the first of two J Pouch surgical revisions done in 1998, the second was done in 2000. I felt like the stool was hitting a wall and this was apart from pouchitis issues. Dr. Gorfine, who performed these 2 surgeries, determined that a "septum" or wall of tissue had developed in the pouch, blocking the normal flow of feces through the J Pouch outlet. The two surgeries completely resolved the issue.

More recently in 2012 my J Pouch inlet strictured and this was resolved through a course of Entocort and changing of my diet.

KangaRoe is right about Mount Sinai. They fixed my issues and it is because they have very knowledgeable people there. They have seen it all.

You should see your surgeon if possible or be examined as soon as possible as you MAY have a surgical issue like what I had in the late 1990s. Good luck.