Hello, I would be very grateful if you could share your thoughts and experiences regarding Neobladder surgery.
My mother had a Neobladder surgery two years ago following a diagnosis of stage 4 cancer.
We were incredibly grateful that this procedure saved her life.
At the time, the doctor did not recommend the stoma bag and chose to proceed with the Neobladder, he didn't explain the differences between the two options.
My mother trusted him, but now she wishes had the stoma bag instead.
Since the surgery, my mother has suffered from severe incontinence—up to 10 nappies a day. She needed to change every hour, often getting soaked and having frequent accidents that required her to get changed. She even paid someone privately to help her with exercises to train the Neobladder, but unfortunately, this was ineffective. Things have improved thanks to a family member’s suggestion to try self-catheterization.
She now uses 4 disposable catheters a day, and her use of nappies has reduced to about 5 per day. She is very happy with this improvement. However, a major concern remains: since the surgery, she’s been experiencing frequent and severe infections—almost monthly. The symptoms include fever, severe nausea, abdominal pain, and dizziness. She needs antibiotics, the test results often show the infection is Escherichia coli. We’re very worried about the long-term consequences as antibiotics will no longer be effective, and repeated infections are putting strain on her kidneys. Is this normal for someone with a Neobladder?
Has anyone else experienced similar issues with infections or incontinence? She feels very alone and worried, and would deeply appreciate any advice or shared experiences. Thank you so much!
