Reply To: Radical Cystectomy longer term issues

[Susan]

I just have to add to Mollygolly’s comments. It’s been one year for me, but Mollygolly, your comment reminded me that earlier on I also had problems with the night bag. I remember being concerned about urine backing up, just like you. it’s crucial to make sure there is some urine in your pouch when you connect – that creates a vacuum that keeps the pouch draining during the night. When I “hook up” for the night, my pouch actually flattens out completely, even makes a gross sucking type noise, haha. After experimenting with the night time bag in a container on the floor, I am now hanging it by a plastic coat hanger that’s placed between the mattress and box spring. It seems to tangle up less when hanging than when on the floor. I also learned from another website to put the connection cord between my legs and under one leg instead of over my thigh.
And the leaks, yeah. A few times (maybe 3) I have had pouches with tiny flaws in them – too small to notice, but ended up with a big wet spot on the front of my pants in short order. And several times I somehow forgot to turn off my little tap (I use Hollister) and within minutes – oh, oh.
One time there was some kind of problem with the little tap and even though I made sure to turn the tap off completely, it leaked.
Having extra clothes on hand is a must, for sure. I must say, though, that the accidents become fewer as time goes on. You know, I’ll bet there isn’t an ostomate anywhere who hasn’t dealt with leaks.
Anyway, I appreciated reading your comments. We can learn so much from each other – being in all different “ages” of our cystectomies.