Guys,
Just wanted to let you know that you can cause a mucous plug that blocks your ability to drain your neobladder, I've experienced that very thing on two or three occassions. Usually it's been caused by my drinking something that irritates my neobladder which causes it to produce more mucous than usual, those things can be soft drinks (coke, pepsi, etc), even just not drinking enough water can cause thicker mucous.
Mty first experience once I realized I wasn't able to pass urine was a little frightening, and I also had some crampy feeling in the area of one of my kidneys. I went to the kitchen and got out my grape juice, in addition to drinking two large glasses of the grape juice I also had a large glass of ice water. Tis all caused the mucous plug to be dislodged and it passed along with my ability to empty my bladder again. If I'd had a measuring cup handy the mucous might have filled at least one and possibly two cups, that was a little scary and I've tried hard not to get into that situation again. It can also happen if you develope a UTI, which I've had a few times as well.
The best suggestion I can give you is to drink plenty of water to flush your bladder, and activity is a very good thing as well. You must realize that your new bladder is not the same size and shape as your old bladder, mine happens to sit on the right side of my pelvis and is shaped like a close parenthesis and actually sort of hugs the inside curve of the pelvis. There are also folds in your bladder that were also not present in your first bladder, this can sometimes cause a problem when you try to catheterize yourself. Changing your body position or redirecting the catheter can sometimes make it possible to empty your bladder, it's a matter of trial and error.
The next time they do a scope on any of you ask to see the image, and if you happen to have an IVP ask your doctor to show you those images so you can see exactly what your bladder looks like and where it is in your pelvis. Having this little bit of information can help you, and I hope you are able to get this information from your doctors (they may already have something that shows your bladder--just ask them).
Good Luck,
Lou Graham
RC/Ileal Orthotopic Neobladder 2/2004