So I have a 12 month old neobladder, and over the first 8 months had obvious pain in my right side which we felt was related to reflux up into the right ureter and kidney. I notced this as my bladder filled to around 400mls (about 2-2 1/2 hours during the day) and this was when I voided. I used to reliably wake with this pain in the night, too, so I stopped setting the alarm at night. My surgeon said he wasn't concerned at that point about damaging the neobladder, as I had virtually no post-voiding residual on catheterizing and also on the funny little machine they used to measure this at the clinic.
However, over the last 4 or 5 months, I have noticed my capacity increasing a lot with no obvious increase in pain or fullness sensation. I have peeed out up to 750mls. I spoke to my surgeon and we felt that this may lead on to the whole baggy bladder thing, so I now went and bought a watch which has a count-down timer (I set this at 2:15), which launches into a stopwatch, to tell me how far past the 2:15 I have gone. I try to keep intervals around 2:30, to keep volumes down. I have also gone back to setting a timer at 4 hours in the night. My understanding is that keep the bladder healthy it needs to not be overstretched, and also to be emptied completely. this sometimes takes quite a while, especially in the night.
Also, a lot of people get colonized with gut type bacteria, and I think the best way to deal with this is to keep the neobladder flushed well (drink lots). I have ended up on long term low dose antibiotics, but this is not ideal. I may ask to come off them in a few more months.
I am not sure how useful this is, but this has been my experience. I guess it would be interesting to hear from people with longer term neobladders with regard to problems, and how they kept their neos healthy.
Best wishes,
Andy.
