I have a medic alert bracelet that says "Neobladder. Catheterize every 4 to 6 hours". Nobody ever even asked about it when I was in the hospital other times. I guess they figure that if you are awake, you will tell them everything.
I kind of doubt anyone other than a civilian (good Samaritan) or first responder would ever even look for one of the medic alert things (bracelet, necklace, watch).
I quit wearing mine (medic alert)about 6 months ago. I'd be better off if they DON'T try to catheterize me. Figuring that anyone doing so would be using a Foley and not a red rubber straight catheter, if I get overfull without a catheter in, it will just leak out (kind of like a normal bladder). If I get overfull with a foley in, then I'll either pop the balloon (preferred option) or I'd just explode and take out a few city blocks. So....if I don't tell them to catheterize me at all, it is the safest bet and I just wind up wet.
My belief is that most people don't know about neobladders so it is in our best interest to explain them to nurses/doctors. My simple explanation is: "They made a new bladder out of a piece of my small intestine and hooked it up to the all of the original plumbling so it's like normal."
For a doctor or nurse, I will now add "....however, since it is a piece of intestine, it creates mucous that can clog a foley catheter. So, with a neobladder, I would need to be straight cathed or wear a condom catheter to avoid a blockage problem."
The KEY part though is that neobladders are highly likely to have issues with foley catheters and MUST be monitored VERY CLOSELY.
That conclusion (paragraph above) is my conclusion based on my experience and what others have said here.
I do know from experience that a foley doesn't ALWAYS clog. They key is that it must be closely monitored. Either flushing is required or it needs to be a big enough diameter with big enough holes that it doesn't clog up.
I hope you are OK now Ed. Going to the hospital that way usually isn't planned. I agree that we should NEVER ASSUME that doctors or nurses understand about neobladders (or any other diversion for that matter). Unless they demostrate they do know based on what they say, I would rather just tell them the relevent information to be sure.
I got my stitches out yesterday and my intestines are working ok now. Next week I will be back on a plane and traveling to client sites. I still have lifting restrictions but I will be able to scuba dive in February. Can't ski in mid-January but that's ok. I am very glad I got this taken care of before it got worse. There was stasis due to the kink and an infection had started there in the kinked area. It could have spread and caused much more problem than it had. Now it's gone and the doc checked every inch of the intestines three times during the surgery. AND...I have a belly button again! Mine had gotten pretty wierd looking due to one of the hernias.
Mike