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.
Any advice???
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