Long Term Experience after Radicalsurgery/Neobladder

14 years 6 months ago #11890 by timb
where is Cheeseheadland?

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14 years 6 months ago #11872 by Joe M
Here's Joe, a 4.5 yr survivor.

I'm a crazy Packer fan living in Green Bay, and wear the diaper at night...no big deal.
No really bad experiences, so far.
Nothing to really to complain about.
A diaper is a small price to pay to still be alive...harassing Bears & Patriots Fans makes it worthwhile! LOL

I had three infections, so far...which is kinda funny; as they called it 'pouchitis' and not a bladder infection.
....it took me a while to realize they weren't making kangaroo jokes about my name, Joey and all that; and that they cannot call it a bladder infection, when one has no bladder. Insurance requires it be defined as a pouch.
We laugh alot at the urologist office!

At this point, I self-cath twice a day, AM and before bed, to reduce infection from leftover urine in the neobladder.
I had an illeal neobladder (made from small intestines) in June of 03.

There are never enough questions, only answers not found.

I wish I had come across this website sooner, than 4.5 years later.

I am recommending it to the cancer support groups up here in Cheeseheadland.

Be good and make 'em laugh.
Joe

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14 years 9 months ago #7717 by Dixie
How long did it take for your neobladder not to leak at all during the day from the time of surgery? How long can you hold your urine before you have to void normally? I know when I drink coffee or alcohol I go like every hour or so. If I am just drinking water I can hold it for about 2 hours. I am 1 1/2 years post-op neobladder, but I had to go back in after 9 months after my surgery for a fistula to be repaired between where they attached my urethra to my neobladder. After that surgery I am doing so much better. I was leaking non stop before that. It has been 6 months since that surgery. The Dr. explained that would be like starting all over again with training my bladder. So I am up to about 1 1/2 to 2 hours holding my urine. I am pretty much back to normal but I feel I get tired faster since my operation. Where you like that? I hope I don't have too many questions for you.
Dixie
PS where did you have your surgery?

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14 years 10 months ago #7708 by enzorino
I have had my neobladder for over ten years. No problems other than slight leakage at night.

I have been trying to find other long term experience but for some (unknown) reason(s) have been unable to do so.


Good luck Enzo

PS I would be more than happy to answer any questions

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14 years 11 months ago #6465 by timb
im a recent one too but am very interested to see comments posted here. who is the oldest neobladder recipient on the site?

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14 years 11 months ago #6457 by Zachary
Since I won't officially be able to post on this thread for another four years, I would love to hear your thoughts and experiences, Enzo.

Off the record, my neobladder seems to be holding up well after a year.

"Standing on my Head"---my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein

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