worried about neo-bladder

Eileen

Your no nonsense style seems a bit rough on your husband. Everyone has different limits and worries. And cystectomy can cut to the very heart of a mans manliness. I was fortunate not to be treated like I was being wimpy by my partner when I underwent my cystectomy and I found it really helpful and supportive. It absoloutely speeded my recovery. I think, in a pragmatic way, there's a lot of sense in some of what you say but, for me, the tone feels abrasive. or maybe thats just the way it comes over. and what do you mean by "decent sex"? Its a lot of different things to a lot of different people. If you mean "when will he get an erection" then it can be up to two years for nerve damage to repair properly but some people report more immediate results. He'll be a bit delicate for a while though so go easy.

T

Dear Mike,

I sympathise with your pre-op nervousness. I hope it helps to know you have the best doctor around taking care of you. If you qualify for the neobladder once he's in there, the chance of complications will the lowest possible due to the excellence of the team and the institution. That being said, you should be prepared for any eventuality regarding what you wake up with, so choose your preferred stoma site just in case you do get a continent reservoir/pouch. Or even 'the bag'.

I know so many guys your age and younger who have been receiving neobladders these past 5 yrs or so, and know guys who are ten yrs down the road and doing quite well. I think maybe doctors push for it because it actually is more cost efficient in the long run, for everyone...assuming from what Pat said, and the fact that more men get offered neos than pouches...or so it seems to me- not a scientific fact).

As for your wife's question (hi Eileen...sorry to hear about your prolapsed organs and hope your surgery goes well!), if things are going to work without implants or shots to help things along, perhaps about a year, maybe less.

Eileen... as a fellow phobic person.I have to come to Mike's defense. I have avoided medical treatment my whole life until it became a life and death situation, needed general anesthesia to get my teeth cleaned, not to mention a good dose of valium to get my blood drawn. Thankfully these are not everyday occurrences or my life would be ruined. If Mike really does have a phobia about catheterizing trans-urethrally, well, I bet he isn't the first guy. Maybe just the first one to make it public!
You sound like a real champ when it comes to things that some people would be quite squeamish about, but if your husband is squeamish about this, you need to give him the room to make the decision that he can live with most happily. Life is long!

I have seen guys' pouches post op and especially if it's been done through the navel it's practically as if nothing has changed.

You've heard it from both sides, men with pouches and men with neos, all quite satisfied with their quality of life. There are also threads on this forum where men state their satisfaction with the external pouch, feel it's much easier and simpler than the other options and glad to be alive.

Best to you both,
Wendy

Mike I had my surgery done at the Univ of Pa. in Phila now after my surgery I had to go in 3 weeks later for what they call a Pouchogram to make sure the pouch wasn't leaking. If it wasn't then I had to stay in the hospital overnight and they showed me what to do. After 24 hrs you will be a real pro. I would say I am usually done in less then 3 mins. If I have to irrigate about 4 mins. Once you start doing it's like anything else you don't even give it a thought. At this point I would not trade in my pouch for anything I am that satisfied with it. Take Care, Joe

Joe, I have one more question if you don't mind.

How long is the process of lubing, inserting, and whaterver else is neccessary to drain out the urine? 1 minute, 5 minutes, 10 minutes, etc?

Thanks, Mike

Mike all depends on where you're going. I have a small shaving bag I have my cath in one of them sealed sandwhich bags, I take some lube in a small bottle or foil. And a couple of paper towels to put the cath on while I get the lube on the end of the cath.
I don't drink ne more ( beer lol ) so I have to cath every 4-5 hrs so while I am out what am I talking about once, and then I will just chuck that cath out so actually at times I will just have a paper bag all disposable. Like I said it depends on where you are going. I'm happy I have been to hell and back fighting this monster and now I am cancer free as of now I have my wife, 3 sons, and 2 grandkids both 5 yrs old one is a girl and the other is a boy. And your wife asked about the nerve sparing surgery that is done when you are getting your surgery it is not a seperate surgery and most guys sorry to say do not end up getting this nerve spared ask around I am one. >

More advice here Mike please tell your surgeon when you are sure exactly what order you want your diversions in because they can't ask you while you're out cold. Another thing the day or night before my surgery the stoma nurse came in and marked a spot where the Ileal Conduit Bag will go up at the Univ of Pa this is standard procedure in case it is the last resort for your diversion and when you are talking about life there is nothing wrong with this diversion at all if you wanna live.

Once you have cancer nothing in your life is the same I read your post you have a great Dr. but you still have quite a road ahead of you so think positive, pray, and fight all the way, and don't get too far ahead of yourself. Good Luck, Joe

Picture of Catheter and not one drop of pee in my pants or bed lol so the Indiana Pouch isn't that bad-Joe

Hi,

Thanks to everyone for the input. I'm still on the fence, but I have a month to decide. I don't have any body image issues, so it's a convenience problem for me.

Joe, is it a problem carrying around all the stuff you need for the stoma?

I'm off for my second cycle of Chemo this morning...cisplatin puts me in a bad mood.

Mike