HELP!- Long Term Recovery - neo-bladder

Well he's got to do the kegals or he's looking at cathing the rest of his life and urinary infections and kidney infections. A lot of men just don't know how to do them. Can you get him with a physical therapist or someone who can teach him how easily they can be performed? He must have been pretty adament on just getting the neobladder because at his age i would have thought the doctor would have suggested an internal pouch...but the good news is ... it can be changed....another operation but if it continues they can switch to an outside bag. Good luck.........

I know he will be happy to hear that. He has been hesitant in joining or reading posts on this site cuz he is afraid he will read something he doesn't want to know. So, I am able to "filter" it for him and eventually I hope he will join and post his own questions. Thanks again

Rob

ive found improvement to be inconsistent too. E.g. you go forwards and backwards and then forwards again. It's not necessarily a smooth, one-way process!

regs

tim

Thank you for your reply. I'll pass on the encouragement. I do know that a number of weeks ago, he felt that here was improvement but then it seems to come and go. So your observation that improvement continues will help him. Thanks again.

Im half your dads age and 3 - 4 months out of a neobladder op. daytime continnce is pretty good - id say 95% but I revise this all the time. nighttime is harder but i've actually had a couple of relatively dry nights recently. For me, doing the kegels have made all the difference. I definitely notice this when I have periods where I don't do them. For instance, I was pretty slack around Christmas time with these exercises and my continence absoloutely got worse. I've found that attaching exercise periods to particular daily tasks that I HAVE to do - like brushing my teeth - really helps. Or when I'm watching the news on telly. Even doing a very small number makes a BIG difference. He doesn't have to be the kegal champion of the world!

Really, all of this should have been adequately pointed out to him by the medics prior to the surgery. Patients here (uk) for neobladder are generally selected on their ability to commit to the regimen needed to get it working satisfactorily. But even when you are doing all the right things it can still take time and it's still early days for your dad. In fact, I've read studies where improvements are still being seen 2 years after the op. All this can lead to frustration and discomfort. And I'm not surprised he's depressed if he's damp all the time and not getting out.

I cannot help but feel that a way out of this is just to do a few small things; a small trip out, a kegal or two at an opportune moment (maybe if he does it when doing something more ordinary then it won't seem like so much of a bind?). Maybe if he sees a few small improvements it will give him the heart to find his way through his unhappiness. I hope so.

All the best

Tim

My father is 80 years old and had RC on October 17, 2006. He would not consider any other possible option other than the neo-bladder. Therefore, the Dr. really didn't explain to him too much of what to expect as to the process of being able to use the neo-bladder. It has now been nearly 4 months and he has his follow-up with the surgeon next week.  Here are some of my questions:
He continues to be incontinent. Has anyone else dealt with someone who wouldn't do the Kegal excercises? He will not do any excercise including taking walks . He recently has not wanted to drink the quantitites of water that he should be and is pretty beligerent with anyone who tries to remind him of the need. Although he use to be fairly active, he now rarely leaves the house, partly due to the incontinence. He is convinced that everything should be working now and that since it's not, it is not going to work for him. Are there things that I should ask the Dr. next week at his appointment? Has anyone found that it takes longer than 4 months to achieve continence?  All and all he is very sullen, surly and depressed. HELP !!! Any input would be very much appreciated.