5 years after radical cystoectomy

I will respectfully disagree with you Joe in that the ileal neobladder is the only way to go. There are other diversions and reasons for the choices. Sometimes the patient can make the choice..other times the surgeon makes the choice after he/she gets in there. Most women will choose an Indiana Pouch because we don't quite have the same equipment as you men...you have a nice long urethra to attach everything to...women do not and success rates with the neobladder on women are not great.
So whatever choice you make..of course...go for it.. do your homework
If you're dealt another hand you'll deal with that too.
Pat

I was in surgery within one week of my Cat scan.
The cancer was just beginning to breach the outer wall, and I consider myself very lucky to have been seen by the surgeon I did.
I had passed a bladder stone, and he decided it was a good idea to do a visual scope then.
I had just a few days to research the cancer and the options.
It was pretty evident that a radical was the only course.

He preferred making a illeal neobladder, over an external device.
But I knew I could wake up with a device, and also no neobladder and some bad news.
I accepted the stage my cancer had advanced to. I had no choice but to accept it.

A radical is not a bad option, if it can be done and it helps.
I'm glad I have an illeal neobladder, as there is no extrenal devices to keep clean, etc.
It's much easier to deal with, I think.

As far as alifestyle change...
With the irreverant attitude I have...wearing a diaper, at night, is a small price to pay to still keep living!
My life is good. My family is happy. My friends are supportive.
My doctor thinks I'm nuts sometimes, but that's his problem!
They do like me, and like that I am proactive with my cares.

Maria, I guess it's just a choice to make. One of the many we do.

I hope you aren't guessing, or playing the "what if" game, about life being drastically different, because it isn't.
If you can have an illeal, it is the best optin, which I am sure your doctor would prefer that; but if you need to go a different way...be confident you can deal with it.
Look at the troops coming home with artificial arms and legs, and ask yourself if you could deal with that.
Most of those folks accept it, and hit the ground running.
The choices come easier, when you put it in a perspective to those who have made to make harder choices.
I have no doubt you too, can hit the ground running.javascript:void(0);

Joe I found your experiences very interesting. Sorry can't answer any of your questions as I have just recently been diagnosed and I am making decisions about what type of bladder replacement would be best for me.

Its inspirational to hear your great news, stage 4 and celebrating 5 years cancer free!! Way to go Joe, I hope you manage to get the right help you deserve to help you resolve your present problems. Very best of luck to you. Maria xx

Joe, it is heartwarming to read your success story. I don't really have any info for you but needed to tell you how happy I am for you to safely reach the 5 year mark with a stage 4 diagnosis. Keep up the good work. Also, have you considered a penile implant? They do work if not quite like the original equipement.
Sam

Hey Joe,

Thank you for your update and story. I'm glad to read you're cancer free 5 yrs down the road. Good one.

It sounds like your medical team has some humor...very scarce in this game. I guess you bring out the best in them. Being a success story helps!

Yes, don't let your neobladder get to stretched or it will leak. Sorry to hear you need to self cath but you seem to survive the experience none the worse for wear. I hope everyone adjusts as well as you have. I do think that cathing only two times a day is not enough (but since I"m not a urologist or survivor myself, you should find out more). Do you measure output, ever? Maybe you should, and keep it under 500mls. That's what I've read.

A friend of mine who has a neo, also does not get erections but says he has orgasms just the same. The life force is strong in human beings, eh?

Take care,
Wendy

A stage 4 bladder cancer got my bladder and prostate taken.
An illeal neobladder since then.
Works fine, except an occasion infection, from not draining completely.
Which is a bit funny, as they called it 'pouch-itis' not a bladder infection.
One can't have a badder infection with no bladder! Insurance gets all wiggy about specific terms, you know.

Being irreverent as I am, I decided that they were making kangaroo jokes about my name Joe.
Joey - kanagroo- pouch!!??
It was funny. We still laugh about it, at the Dr's office.
Every six months I get a checkup, and go visit my nurses and firends I made during my stay.
I had a post surgical infection and appendcitis, which kept me as an inpatient for 73 days over 6 months.
The surgeons claimed they had nightmares about me.

The surgery was not able to be a nerve sparring procedure, so impotence ended that activity.
Viagra, etc was useless and I'm not about to got the injection route. If you know what I mean.

I do have night incontinence...so a diaper is in order, but the daytime has not had any leakage problems, and I have wound up with a full 'pouch'. I drain, with a catheter twice daily; upon waking and just before bed.
Although the urologist warned about over stretching the neobladder, I was wondering if anyone had complications from an overstretched neobladder.
What happens to it, physically, can it start to leak at the staples?
Is is prone to pouchitis or other marsupial anomolies?javascript:void(0);

Thanks,
Not the Kangaroo.