Looking to connect with people who had Cystectomy & Neobladder

Hello @mikev. Sorry to hear of your repeated bladder infections. My husband's medical team explained at the start that it takes a while for the bacterial population of the small intestine used for the neobladder to adapt to its new role as a bladder. There may always be bacteria found in a urine sample that are present now because it was a piece of gut used to make the bladder. Mayo urologists always want to do their own urinalysis because local labs may not realize the changes in bacterial population. Presence of blood microscopically can also last for a long time as well as an increased production of mucous that never seems to stop. White blood cells are present in the mucous, so many features of a UTI can be present in a daily sample. If this is your medical team evaluating a U/A then they know the difference between a UTI and the new normal for a neobladder, which a local lab may not. My husband was treated with antibiotics 2-3 times during the first 2 years postop, but he had many complications with ureter blockage, nephrostomy tubes placed, stones identified on scans, and incisional hernias.
I wonder if a good probiotic taken orally would help manage your bacterial population? Maybe a question for your medical team.

@sepdvm thank you for the response and the information it's very helpful for me thank you. My team is aware of my situation as far as the neopladder in my urologist just put me onto a probiotic this morning so if she is in contact with my surgeon and hopefully we'll get this straightened out or at least under control

Hello mgb007, my name is Charlie and I chose the Neo Bladder procedure because for my situation it was the most curative option. I had my radical cystectomy back in Oct of 2025, so I am 10 months past surgery and doing good at month 6 and last CAT I was Cancer free. I had Non-muscle invasive bladder cancer ( high grade) and I had no complications other than the 7.5 hr surgery takes a long time to recover with many steps. I was able to leave the hospital after 3 days and had a NEO bladder catheter and kidney stints as well to drain urine and give the neo bladder a break while healing. I had my tubes and bags removed at week 3 and the first few months were a challenge for sure. I avoided any UTI or any other bad complications. I now deal with finishing training my NEO bladder. At night I still struggle to get more than 3 hrs of sleep at a time but during the day I am close to normal (I void every 4 hrs and stay very hydrated 67 + oz of fluids a day 50% water) . I now see a pelvic floor PT and she said I am only at 20% strength and can take up to 18 months to get full night time continence. So I am 90% back to activities pre surgery. I can play 9 chains (holes) of Disc Golf. I go for walks and practice disc throws 3 times a week. I will have my 1 yr CAT scan in Oct and will go from there. But all in all I am grateful I had the procedure and I am happy and doing the best I can.

@stevendtaylor
I too am being advised for cystectomy. Have you had any complications or issues after going with the neo bladder? I heard recovery involves training a different set of muscles....can you explain what that means?

@gs121
I did not have any trouble with control; it might have taken 3 or 4 weeks. I did have some issue's with infections, eventually had to have a 2nd surgery 8 months later, but that worked.

@stevendtaylor

Thank you….that is good to hear……

@stevendtaylor
Hello Steven. My husband had radicalcystectomy w/prostatectomy and Neo bladder Mar.27th. Due to a small leak in neobladder, he was on foley Cath until June. He is having a rough time with rehab and the neobladder. PT is not working and he is getting frustrated and discouraged. He is 69. Any chance you could talk to him and give him some ideas as to how you got to “continence” and less leaking. I think talking to men his age who have been thru this will be helpful for him! Let me know! Thanks so much!

Steven, I had a radical cystectomy and neobladder over 28 years ago. I’ve been grateful every day that it didn’t just save my life, it gave me a normal life.
The big risk is if you cannot retrain pelvic muscles to operate the bladder at least during daytime it might be a bad solution. But the good news is that being relatively young and in good general shape, you should be ok.
The surgery is hard on the body, and you might find that overall muscular weakness following the surgery makes it harder to re train the the pelvic muscles in the first few weeks. But I worked on it every moment I could - even when sitting in the car at traffic lights - and while still wearing continence pants. And in about 4- 8 weeks it suddenly started working, and not just kinda working, I got to 100% control. Even at night.
It stayed that way until a couple of years ago when I got to near 80 and aging started to weaken those muscles, but even now it’s not a big problem.
The other major side effects all manageable -
- severe and irreversible ED from the prostate removal. The magic blue pills just don’t help surgically caused damage. But I’m sure the surgery has advanced a lot in 29 years and there might be a 50/50 chance of saving that nowadays. And if not it doesn’t mean the end of intimacy, just a much more inventive approach.
- occasional UTIs, but I mean very occasional.
- occasional blood in urine. This caused mainly by having almost too good control, and letting the bladder stretch. The Neo bladder just isn’t as stretchy as the original and can get minor damage which is hard to heal.
- because neo bladders are still relatively rare, many doctors have little knowledge and can make mistakes like prescribing blood thinners to protect you from strokes, which caused bleeding I couldn’t stop. Or over reacting to urine samples showing bacteria which is actually pretty normal in a bladder built from gut!