Bladder replacement options

16 years 3 months ago #11049 by Gene Beane
Replied by Gene Beane on topic Bladder replacement options
Hi Duane,

I can only vouch for the outside bag, it may not be the current popular style but for me at 66 I went with the right one. If I wanted I could have done the neo and take a chance my heart would hold up under the surgery but I hate cathing myself, or anybody else cathing me. If I was 40 years old or up to 55 60 I may have tried it, but this is simple, I don't even feel its there sometimes now, and the fit is perfect. No matter which you choose theres a time period for getting use to it. Peter K just got a bag as well, if you want a second opinion, which we all advise, send him a message, he's just 2 weeks out of surgery and doing great..
Gene Beane

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16 years 3 months ago #11048 by Patricia
Replied by Patricia on topic Bladder replacement options
Well i can speak for the Indiana.....It takes a little training at first..every 2l/2 hrs for a week...then up to every 3 hrs for a week...then to every 4 hrs for a week....night time takes a while longer but the pouch comes around and lets you sleep after time..I'm 4 l/2 yrs out...and i only empty 4 times a day and go 6 to 8 hrs at night. I also don't drink much in the evening after dinner. A lot depends on your intake of fluids...i went back to drinking what i drank before my cystectomy and that worked just fine for me. There's a little valve in there to prevent any backup into the kidneys. I also do not reuse catheters and i've never had an infection. My scar is completely healed..there is no bulging or anything..my stoma is where my navel was so physically right now you would not know i had anything done.
I'll let the guys weigh in on the neobladders..a lot of them are not that far out from surgery so maybe it takes a little more time with the neo's to train them to capacity but i'm sure it must be about the same?
If you're having the surgery done please have it done by someone who does these all the time ... its really paramount to your success. I mean you may be in love with your present uro but if he doesn't do about 60 or more of these a year please go with the second opinion surgeons at Indiana. Pat

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16 years 3 months ago #11034 by Duane
Replied by Duane on topic Bladder replacement options
Thanks for the info. Gene, was part of the reason to go with the outside bag because of the maintainance. I mean, it looks to me that the neo or indiana require a lot of learning and peeing every 2 hours . where as the bag is just empty it when its full. dmartin---thanks for the encouragement this is a lot of stuff to take in so fast and try to make an intelligent decision that is going to effect me for the rest of my life. Patricia,---thanks I'm waiting for Doc Pike to call back to discuss when to scedule my operation and to set up a second opinion with Doc Foster.I was 99% sure I wanted the outside bag, but after reading as much as I have I think I want some more info on the indiana. It doesn't seem to be as much of a risk for infection. Thanks for the information Duane

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16 years 4 months ago #11001 by Patricia
Replied by Patricia on topic Bladder replacement options
Duane...Indiana University Medical Hospital is great...they do hundreds of cystectomys a year. Richard Foster is a very good surgeon. I actually went there and saw Dr. Bihrle also a great surgeon. I'm sure he is competent in whatever type of diversion you would like. I would ask him his success rates with the neobladder and ask for some references so you can talk to them. Indiana kind of stays under the radar but they are a great center...came up with the cure for testicular cancer and i can really attest to their skill as my son came down with that at 29 yrs of age and is completely cancer free today. I can't say enough good things about them.
So i would highly recommend you have your surgery done there. Success rates with the neobladder on men are very high so i would consider it if you're still a relatively young man which is anything under 60 (thats the new 30 you know)....
You're in very competent hands.........Pat

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16 years 4 months ago #10995 by dmartin12358
Replied by dmartin12358 on topic Bladder replacement options
Getting rid of aggressive cancer is most important, the type of diversion is secondary. Your surgeon will ultimately make the decision during surgery, most likely.

I've read many posts from folks who have external bags or neobladders... and the consensus is that you'll get used to whatever diversion you end up with. I am entirely satisfied with my neobladder, but others are just as happy with other diversions.

Just be sure that an expert is doing your surgery.

Glad to hear you got a 2nd opinion!!!

Good luck.

Dan

Dx 7/04, CIS + T1G3, Age 50
2 TURBTs
12 BCGs
Cystectomy 8/05 USC/Norris
So far, so good (kow)

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16 years 4 months ago #10994 by Gene Beane
Replied by Gene Beane on topic Bladder replacement options
Duane,
I can tell you my husband is happy with his outside bag. Its been 10 weeks since surgey. H e had his bladder removed at the Cleveland Clinic, they did laproscopic surgery to remove it. I guess if I knew how old you are I would be better prepared to answer your question. At 66 Gene felt it was the best fit for him plus he had heart problems last year. Many men like the neo bladder, I don't know if he would have choose that as he thought the maintance was time consuming. He wasn't offered the Indiana pouch. So for us bag people we are doing fine, he even forgets its there sometimes now. The good news is your getting rid of the cancer, Ginger

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