Im having my cystectomy in Oct. My surgical team have made me aware of possible complications but are typically vague about specifics. I feel this is fair enough as everyone is different with different problems and issues and it isn't possible to foresee all of these for the individual. That said, it's useful for me to hear a broad spectrum of experience; the good and the not so good, so that my expectations for this surgery are realistic. Thanks for telling us and I hope things get smoother for your husband. It sounds like he's having a rough time to say the least.
Thank you for sharing. I am 4 1/2 weeks post-op from RC w/ Neo-bladder myself. My doctor did warn of many complications that could arise after surgery but it is nice to hear about them from your perspective. I am 45 years old now and hope to have another 25-35 good years in me. I need to learn more about such side effects so that I am prepared to deal with them down the road if need be.
Believe in yourself,
RC w/ Neobladder 8/22/06
My husband Charles was diagnosed with bladder cancer in Jan 2005. After all the tests it was determined the bladder must be removed. We were referred to a University Of Alabama urologist. The Dr. recommended a "neobladder" which is a new bladder constructed from intestine. Everything went really well with the surgery, no other signs of cancer in surrounding areas. The neobladder functioned properly and we were sent home after 9 days and went back 2 weeks later for catheter removal.
There was a big problem with "excessive" nitetime incontinence from the beginning. About a month after the surgery Charles just wasn't feeling well. He was very weak and running a low grade fever. We went to the local urologist and it was found he had a Urinary Tract Infection (UTI). Antibiotics seemed to clear it up. This happened 2-3 times. Then he finally got an infection so bad he had to be hospitalized a week for acute UTI treated with massive doses of antibiotics. Again he got better....for another 3-4 weeks. This time he could not urinate! This wasn't good when we were told from the beginning that the new bladder should never get too full because it could stretch and/or possibly rupture.
We called his UAB physician and rushed him to the Hospital there. It was found he had a restricted urethea (tube from his bladder through the penis). This was what was causing so many infections. He had to be hospitalized AGAIN for surgery to remove the restricted section. This required surgery (incision) under the scrotum nd according to Charles was worse than the bladder removal :o.
After this surgery, there have been no more infections however the nite time incontinence never improved. We were using several bed pads and the linens still had to be changed daily. Yes, he tried everything...setting the clock to get up several times a night, an alarm that sounded when the wetting started, no liquids after 5:00, even tried the external catheter which is like a condom with a drain which can be attached to a bag (this required "gluing" to his penis which didn't work at all).
Approximately 2 months ago during a check-up at UAB the incontinence was addressed. The Dr. did a doppler on the kidney and found that it wasn't draining completely...over 700 cc's remaining after voiding. The Dr. instructed him on self-catherization which he has to do every night before bedtime. Thankfully this almost stopped the excessive bed-wetting....still incontinent but small enough to handle with protection and a bed pad.
Yesterday we went for a 1st year check-up-MRI and x-rays to see if there was signs of cancer elsewhere. It was found that his left kidney is not functioning! After several tests a ureter blockage was found (the tube leading from his left kidney to the neobladder). The Dr. feels sure it is more scar tissue (as with the previous urether blockage) but wants to be sure it is not a tumor. Next week the Dr. will try to go through the bladder up to the blocked ureter to see if it can be unblocked and to get a biopsy. If he can't get through that way, they will go through his back into the kidney down to the ureter....wish us luck that it isn't a tumor!!
I am writing this to let people who have had a neobladder to be very aware that other things can happen and they should be on the lookout for complications. I know I have read about the consistent bed-wetting and it could possibly be like Charles, the bladder isn't draining completely. I have also read about multiple infections...which could be caused by a blockage!