Hi!  I had my J-Pouch surgeries back in 1990.  My pouch "opening" in rectum narrowed and my local GI did a "Dilliatation."  I am sure I spelled this wrong but he would insert hard "dilatation" object in to my rectum and have  me hold it in place for 15/20 minutes at a time.  It was very uncomfortable and from what I learned later, it should have been done under sedation.  Something you could take to your Dr. about but definitely make sure they do it under sedation.

My pouch was emptying about 30%.  I had all kind of crazy tests at Mayo Clinic. They  started me on an irrigation process   (Almost like an enema but for your Pouch).  It is a lot easier and quicker than it sounds.  I have a plastic type catheter that I use in the shower every morning. You insert into rectum/J-Pouch and leave it there.  Then you fill  a 60 cc  catheter tip syringe with shower water and insert it in to the bottom of the catheter and release the water.  I remove the syringe and repeat  the process until the water coming out of the bottom of catheter is clear.

It feels so good to have a clean/empty pouch.  It doesn't take more than a few minutes in the shower.   It has been a game changer.  Before this, I always felt like I needed to run to the bathroom.  (Then it wouldn't empty all the way and the cycle continued).  

My sphincter muscles have  been OK but I had a lot of narrowing (per above).  The catheter I use helps keep the  Pouch opening from narrowing so this is an added bonus.  If the plastic catheter is too big or uncomfortable I believe you can try it with a smaller soft/rubber type catheter.

 I am going to try to attach pics but I apologize as I have been using the same catheter for probably 20 years so it is very discolored.

 I clean it once a  week by letting  it soak in bleach.  (Just make sure to rinse it out very well before I use it  again).   I am not sure if this will help but  it may offer some relief?

3cutedogs,

thanks for the reply! That is very helpful info, I’ll have to look into that. I’ve been using miralax and tap water enemas to get by. It helps a lot but not completely. I asked my doctor about self dilating bc I’ve read about others doing that daily or weekly for strictures and even tight sphincter. She didn’t say No, but said she’d like me to try PT first as I could accidentally  do damage to the jpouch. I’m with you, an empty jpouch is the best feeling! I’m sick of the feeling of something “right there” but it won’t come all out. I don’t have a stricture right now and my pouch is healthy otherwise. I think the sphincter is definitely the problem.

Hi! I wish your Dr. would consider a dilation "in office."  I think it was actually my colo-rectal surgeon who did them.  I remember him saying if they aren't done right they can cause fistulas?  I developed fistulas/abscessed not long after I had the dilations.  Not sure if it was related?  I did end up with Crohns in my JPouch so the fistulas may have been because of this.  I hope you can find relief... quickly.  I am  embarrassed to post the pics of my catheter but thought even if it could help one person it was worth it.  Please keep us updated.... I am very interested to know what the PT would involve.  It sounds like you have been through so much. 

Aww, don’t feel embarrassed! It was very helpful advice so I really appreciate it! I’m using enema bottles right now, but your system you’ve got going sounds a lot better. I may have to give that a try! I’ve done a couple in office dilations. There aren’t currently any strictures. Just the dysfunctional sphincter/pelvic floor. I really hope the PT helps but I have a feeling it won’t hopefully someone will chime in that’s had PT for a tight sphincter and pelvic floor...I’d love to know what it’s like. I will definitely keep you posted!

thanks so much!