Could Shavon or somebody tell me what this "boiled" catheter idea is? Valve and pouch tissue can be severely damaged by burns just like any other tissue — warming up the catheter in water that is not hot enough to make you withdraw your hand makes sense, but any hotter than that is not advisable!
Also, Shavon, did you see a surgeon who actually builds pouches (BCIRs or K-pouches)? Sounds like you were not convinced that you were understood or properly cared for. In my experience, you shouldn't be having all that pain — maybe a bit of difficulty every once in a while but not as much as it sounds like you're having.
I'd be happy to make some specific suggestions but I don't want to hijack this forum — feel free to PM me (see the pull-down menu upper right / "private message").