Starry, are you planning to have the J-pouch connected, or have you decided to keep the external ileostomy? Is it a loop ileostomy or an end ileostomy? How long have you had the unconnected J-pouch?

Some people report that the mucus diminishes over time, but others only get relief when the J-pouch is connected (which doesn't sound like your plan). Most folks seem unable to control the slippery stuff.

The drs said they will not ever reconnect the j pouch. I have a loop ileostomy and from what I understand they don't plan to change it to an end.   April I will have the loop ileo for 2 years.

At first the leakage wasn't bad and j could deal with it.  Now it's just constantly pouring out as i move.  Walking and bending I can't control it.  

I cant imagine that being the reason I want to remove the pouch and close up the bottom but it is.   

Medically speaking, no, it is not a reason to remove the j-pouch. 

But, regarding quality of life, it is. That said, if your surgeon resfuses to convert your ostomy to an end, I see a similar issue about pouch removal, which is a much more involved surgery, with more risk of complications.

I forget, have you sought a second opinion? You definitely need one!

Jan

Starry, sorry to hear about your issue. I had same issue prior to my takedown with the mucus leakage and not being able to control it, so they scoped me when it got worse and closer to takedown, and I actually had pouchitis in my jpouch without it being connected so not sure if this is helps your situation or not, but this was my experience.

Jason

Jason - did you have any other symptoms of pouchitis at that time?  I have no other problems except occasional "pressure type feeling in the j pouch area but I can handle that.  My last scope was April and they said it all looked great inside.  

Hope you are doing very well now after takedown. 

Just had the increased urgency/frequency with the passing of the mucus, and couldn't control.... Would walk/run whatever and things just "happened" and I couldn't control it. I'm doing fairly well, just has been a battle so far with pouchitis for me, but control it with Cipro, Pepto Bismol capsules and diet when it's bad. I am getting ready to try VSL#3 DS, and see how that goes. Other than that doing ok, just keep barrier cream handy, and if you don't have a bidet yet I would look into getting one. I bought a travel one that works well for me, you wouldn't believe the difference it makes when you use it vs TP.������   Hope you get things sorted out soon..

Jason