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Neobladder and continence concerns

10 years 2 months ago #30647 by mmc

Got my neo on 10-8-08. When the catheter came out, it was like the sphincter just stayed open. Pretty much just leaked out. After a few days, I was getting better and better. At four weeks (post-op) though I was quite frustrated and posted about it here. Folks told me to just hang in there and they were right. Got continent within another week for the most part.

Wore the Depends gaurds for men inside tighty-whities during the day. At night the full Depends diapers, but I added one of the gaurds inside that and it helped for extra absorption.

I am one of those few that didn't seem to get night time continence so I use condom catheters at night hooked up to catheter bag. I don't mind at all though as I get to sleep through the night without ever having to get up.

Those exercises are the key to gaining daytime continence at least.

Over time, my ability to empty seemed to reduce and my neo got over-stretched. I know it stretched out to about 1000cc (should only be about 500cc). Because of that, I became hypercontinent, which means I only go by using a catheter. That sounds a lot worse than it is though. Once the prostate is gone, it is not a problem to use a catheter. I travel pretty much every week on business and I just carry a catheter with a little gel pack in a zip lock bag in my pocket. I go into the stall to use it and then I wash it up. I've become a master at washing the catheter discretely in public restrooms but if it ever touches the sink or counter, I toss it and use a new one.

My story is fairly uncommon though. I always seem to fall in the small number part of percentages for darn near everything to do with bladder cancer.


Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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10 years 2 months ago #30642 by Hox
Previously posted as Studder concerns... worried about gaining continence... Your experiences would be greatly appreciated... Rick


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