Sunday night I changed the pouch out as I was planning to and found a little deterioration to the barrier ring, but things looked okay. I attempted to leave a little extra room again on the new setup, but evidently did a horrible job of it that time. I woke up around 5:00 a.m. Tuesday morning and felt wet on my t-shirt. I got up and went straight to the bathroom and the mother of all catastrophic pouch failures was there tucked inside my belly band. I did slip back into the bedroom and happily find that between my ostomy belt, belly band, and t-shirt my bedding and sheets had been spared. It was really amazing considering the pouch was only being held on at that point by the bottom strip of wafer tape! After much showering and clean up, I was re-pouched and went back to bed for about an hour to get a little more sleep.
That afternoon I made a call to the WOC nurses up at Cleveland Clinic. I got to explain the situation and got some good advice from the nurse I spoke with. She agreed that the output from that secondary opening of my loop ileo was causing problems. Her advice was to start by switching from the Adapt paste ring to the Stomahesive paste that comes in a tube. The thinking behind that change is the Stomahesive paste does not swell up as much as the Adapt ring and hopefully will still allow room in the flange for the secondary opening to do its thing. She is also sending me some samples of a one piece convex pouch from Marlin that is supposed to be more flexible and able to move better with my body. If none of that works, then I'll end up going in to see them and get evaluated to see what we need to change.
So far, so good. Tuesday evening I decided I wasn't comfortable with the Adapt ring change I'd done early that morning. It was vaguely itchy which is never a good sign. I went ahead and changed things out before bed and used the suggested paste set-up. It's now Friday morning and that same pouch is still going strong with no issues. I'm very pleased. I will be changing it out later this afternoon and I'm curious to see how my skin looks underneath. Hopefully this new paste will take care of things. I still want to try the Marlin pouch when it comes, but I'm happy to have some relief from what I have on hand. I feel much better going into my group run tomorrow morning knowing this set-up will work for me.
I'm learning that it's always something and this whole ileostomy thing is a process. You have to be patient (which I am horrible at!) and willing to experiment a bit. You have to be willing to ask for help when you can't find your own answers. And you also have to be willing to accept support from family and friends when you are having a difficult time. All of these things make the process a little easier.