Hi! Let's see: I'm male, five years since surgery, I have a neobladder, I've had a couple of UTIs, taken care of normally with antibiotics, I wear an underwear pad at night and a bed pad under my sheet, I have to watch drinking too much liquid before bed as I can pee at night, but that rarely happens now (maybe 3 times a month?). I generally need Viagra to have sex, and have trouble getting a long-term prescription, my insurance needs prior authorization every time, and recently I think I might be giving my partner UTIs so I'm going to try to find out about that... since our urine isn't sterile any more, maybe we're causing infections? Anyone else have experience with this? I generally can't empty my neobladder all at once, I have to pee, then wait 30 seconds or so, then do it again, and then once more if I really want to empty it (as at bedtime). My oncologist says it's just normal mechanical function, like squeezing a loose bag, some urine collects in pockets and needs a few tries to push it all out. Otherwise everything works as it should, knock on wood.
You should not have to do one second of research on this. His doctors should have laid out a schedule for follow-ups, and if they didn't, someone should get in touch with his physician and see what his schedule should be.
My dad had neobladder surgery at City of Hope back in July of 05 and so far so good. Thing is, now I'm not sure what we're supposed to do if anything...is there anything he should be looking out for, following up with or doing? Should he be visiting his kickass team at City of Hope on a yearly basis for xrays or an exam or something? What to do what to do. Generally speaking he's doing WONDERFULLY well, especially considering he's an 82 year old guy! Attempted a bit of research on the longterm effect of this amazing life (and lifestyle) saving effort, but haven't found much on the subject (that's not extremely medical in nature). Should we just count our lucky stars that he came out so well or are there follow up steps to take from here?