worried about neo-bladder

Dear Stephany,
This is off topic, so we can start another thread if necessary. What kind of stricture are you referring to? a urethral stricture by any chance?
I still have my original bladder, cancer-free, which is why this is off topic, but I have had no end of trouble with my urethral stricture which is why I've been looking to find out other people's experiences with one.

Mike,
Dr Schoenberg performed a neo-bladder on me on May 25, 2006. I new from the start I wanted a neo-bladder, no matter if I would have to cath myself. I wanted to be as normal as possible. I knew I would have a real problem dealing with a stoma mentally and so would my husband. I think I called every female on the list that Dr. Schoenberg gave me that had neo-bladders or a stoma to cath. Some leaked and a few had to cath them selves. It really helped me to talk to them. I think in some literature that Dr. Schoenberg gave me it said I would have a 60% chance of the neobladder working and a 25% chance of having to cath myself and 15% chance of leaking. I figured if I had a neo-bladder the chances of cathing were only 25% if I went with a stoma it would be 100%. Well, I never had to cath myself I just leaked. I am almost dry through out the day now and at night I have to wake up to go around 3AM. Some mornings I am dry and some mornings I am wet but I am getting there. I did Kegel exercises in the beginning but know I only do them one or two times a day. Sometimes I forget totally, but the more I do them the dryer I am. If you would like to call me feel free. My name is on Dr. Schoenberg's list (Dixie)
Hopefully, I have helped you. I would highly recommend Dr. Schoenberg he is the best. He gave me a neo-bladder that works pretty well and saved my life. I choose him after seeing six Dr.'s if that tells you something.
Dixie

Hi Mike,

your message sounds like if it was mine, written three months ago. I had exactly the same worries. I'm 54, also otherwise healthy, and so I think at your age we're pretty close.

I was seriously considering Indiana pouch, too, using exactly the same logic. But my surgeon stated that the neobladder is much better option at my age. So I gave up on my worries - and went for it. What the heck do I know - he is the expert.

I had 12 hours surgery on June 26th.

I was out of hospital in 5 days, but I was back in a week for four more days because my bowel movement did not wake up as expected. That was the worst part.

I never had to catherize myself, not even once. I was never even trained to do so, either - my surgeon said it is not necessary, and right he was.

I became day time continent just week after they removed the drains. That is about month after the surgery. Of course I needed to watch the clock, but I can now pretty much tell, by what my belly is telling me, that it's time to go. It is no longer an issue.

The night is different story, I still have to wear pad, and it seems that this one will take much longer to tame. But I do not set my alarm clock anymore, and usualy get woken up by the pad being wet after about 6 hours of sleep - that is if I stop drinking any liquids after 6PM. I wear the Serenity underwear from Wal-Mart, gentlemen here were right - it is the best suited for man's plumbing. Even though I have the waterproof pad in my bed, it almost never get wet anymore, the underwear catches everything.

But that will get under control as well, it just takes little longer.

The only difference from before is that when I really want to fully void, I have to sit down to contract the muscles properly, can't quite do it standing up. That's another small getting used to for me, but no big deal.

Sexually, the nerve sparing was allegedly success, but I can't tell yet. It will hopefully return to normal in time, too, maybe with little help from some medications.

So, overall, I'm verry happy with the neobladder. Of course now: that's just me, we're all different. From what I learned I wouldn't have much problem with Indiana pouch either. But neobladder is just so much more convenient - it's almost the same like before, no need to carry supplies with you, no need to care about the stoma.

But as you said, the prospect of complications is scary. The possibility of complications is, as I learned prior the surgery, 12%. I'm an engineer - 12% possibility of failure to me is absolutelly unacceptable. Couriously though, in medical profession, 12% is considered great. Go figure. But what can you do - we do have to take some chances. Anything beats the alternative...

Also, neobladder is a HUGE surgery. What they do inside is nothing short of massacre. My belly still feels like if it was someone's elses, hard to describe. The bowels are actually still giving me little trouble here and there, I have to watch how much and when I eat. But it's getting better every week. I'm now sure that in 6 months I'll be like new

By the way, my surgery was performed by Dr. Jason Gee at University of Wisconsin, Madison. Needless to say, the man is God to me

Good luck, Mike, with whatever option you may choose.
My sincere wishes of speedy recovery - please keep us posted how did it go.

Joe

Heloo, Mike. My husband wanted a neobladder, but he had other problems (like a stricture which kept returning), so his surgeon, who is one of the advisors to this list, recommended an Indiana pouch. He had his done 5 weeks ago, and so far, the catheterization is no big deal. You have to carry a little more stuff around, but having that cancer out is a great trade-off.

Yes, call those people. Men have a hard time asking other men, I think, while women would not hesitate....it's how they bond. Just think of it as asking them for a recommendation on how to get through the surgery. Maybe that will be easier 8).

Stephany in Iowa

Thats your wifes job right now to tell you you're crazy!..Anyway call those numbers..it will be worth it believe me. Dr. STein gave l3 female neo-bladders to call....it was an eye opener for me with the women. And truthfully for me as a female i just wasn't into smoke and mirrors if i had to cath in a dark dingy yucky bathroom somewhere...at least you guys can see where you have to go!!! If Dr. Curley or Dr. Moe was my surgeon i probably could see your point...but you do have one of the best....i think personally you'll be a success. But having said that there is nothing wrong with an Indiana Pouch...2 of the guys here have one...Joe and someone else who's name escapes me...its a lot more expensive as you need a ton of supplies...catheters, lubricant, gauze dressings for a while, bandages..saline solution. a baster type apparatus to put in the solution.....while my insurance covers 80% of it...i've found that some use Medicare as a guidline and they are still in the dark ages about internal pouches and will only allow 4 caths a month which is just ridiculous. I'm determined to fight these morons! So far i can actually hear them laughing at my letters, the doctors letters, all the way from whereever their cave is. Pat

Hello Mike,

You might want to read this thread that discusses self-catheterization.

I've had my neo-bladder for over a year, and have never had to self-catheterize or even felt the slightest need to.

You're in the hands of one of the best in the world. You'll be up and peeing in no time. ;D

I'm also sending my cell phone number by PM. Please feel free to call me anytime.

Best wishes,

Zach