I have a neo and I hope I can help.
Is this a real burning sensation or is it a sensation of having to go?
How long has it been since the surgery?
Could this be a UTI?
This may help
Absolutely stop drinking any acidic fluids
Ask the Dr to do an ultrasound and see if he is indeed emptying his bladder.
I did keegle excercises after surgery and that kinda helped.
Is he pushing too hard when he goes and causing pain?
I am frustrated myself and I have had a neo for 7 years and I still have a leakage issue and sometimes I have the urge and nothing happens.
But if the surgery was recent.......... patience is the key. There is a lot of adaptation that has to happen with this new body part and it takes time..... LOTS of Time. And even 7 years out I still have those days.
Sorry I couldn't offer you a quick solution.
Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.
08/08/08...RC neo bladder
New Man! [/size]
I am sorry your Dad is having this problem. I have no idea what to tell you but I have one idea but it maybe off base. Has he looked at his diet? After my Radical Cystectomy "I Have a Indiana Pouch" I had to watch things that were high in acid, such as viniger or pickles. The new bladder can get very irritated and cause pouchitis as I call it. Anything that might irritate the new bladder could be the culprit it couldn't hurt to leave off the coffee or soda if he drinks it and try water. If my theory might be right it might take a while to get it to settle down. Hope this might help keep us updated.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
I have found this thread helpful as I'm trying to help my dad through his new surgically installed neobladder.
He has been miserable, not sleeping, and complains constantly about a sensation he feels in his urethra. It is making him crazy and greatly impacting his will to live.
He is only 62, in great shape but had invasive bladder cancer. They did chemo, put in his neo bladder two months ago, and now they are wanting him to do one more round of chemo.
Overall, he's feeling good and is in great shape.
He just complains constantly and can't sleep due to a nagging burning sensation that makes him feel like all the urine isn't draining out of him. He constantly feels a burning sensation that makes him feel he has to urinate but can't. He describes it as a burning sensation in his urethra. And it drives him nuts. It prevents him from sleeping and overall he's entirely miserable because of it.
He likes the Neo Bladder but is now considering reversing the surgery and getting the stoma. He simply can't take this sensation and the doctors at MD Anderson have no idea what is causing it. They have checked and re-checked and seem stumped.
They make him feel like he just needs to relax and have told him over and over that his bladder is working great.
Nevertheless, it may be working great, but he is miserable with this feeling of discomfort. It is making him delirious because some days he literally can't sleep.