worried about neo-bladder

I have an Indiana Pouch and my stoma is no bigger then the size of a quarter and I am very pleased with it. About 5 times a day I have to cath myself and I don't feel a thing at all it's a piece of cake. I was trying to get a neobladder also but I bumped into some problems and I told my surgeon this was my second choice. All surgeons usually ask what diversions you want and in what order b4 the surgery just in case they have a problem such as my case. The main thing here is my surgeon Dr. Malkowicz saved my life and I am now cancer free as of now because of him. You never know what is going to happen so you learn to live with what you have to live with. One Lucky Guy, Joe

Hi
Well for one thing with the neo-bladder it doesn't quite operate like a real bladder...you don't get the same kind of signal or urgency that your normal bladder will give you.....some men can do kegals ..others haven't got a clue what or where they are. Most men who have an extremely competent surgeon like your husband has will most probably not have a problem with the neo-bladder once it is trained. The nerve sparing really depends on where the cancer is located...it may or may not be an option...however having said that...talk to Zachary. Most men do not have to catharize...thats not l00% though. Women have much shorter urethras and its a bit trickier to hook up the neo-bladder..leakage is common...and catharization is common....so if some of us females don't want to go into dirty crummy bathrooms and use smoke and mirrors and want a more convenient area to cath, an Indiana Pouch is a nice option. Hypercontinence was not on my agenda and i made an intelligent informed choice...my choice. And everyone else should do the same dependendent on their medical condition, age, or phobias. And sometimes you don't have the choice...the doctor does when he gets in there.
If i was a man i sure wouldn't want to see that catheter coming either...my sympathies to you all. I'm sure if you get someone other than Nurse Ratched to instruct your husband on self cathing maybe he'll be ok with it...and maybe he'll never have to do it.

Hi everyone - this is Mike G's wife - the one who thinks he's crazy. Why would a very very active, otherwise healthy, never smoked, 58 year old choose to get an indiana pouch when he is the perfect candidate for a neobladder? How hard can it be to learn to be continent at night? or in the daytime, for that matter? Also he is phobic about catheters. You should have seen him before his first cystoscopy - he asked the urologist if he could be "knocked out" for the procedure. The doc looked at him like he was nuts! He said he has done about 12,000 cystos, and they take about 2 minutes, and he had NEVER done one in the operating room. So Mike had to suck it up, and guess what - HE SURVIVED!!

Anyway, if you leak a little bit, what's the difference? Women sometimes leak a little when they sneeze or cough. Also, we wear pads, etc. when we have our periods. It's not the end of the world. Do your kegels. Am I crazy or is my husband? Believe me, I'm not minimizing this whole disease, surgery, chemo, etc. It's a horror. But I for one would like to be as normal as possible afterwards. Why would you choose a stoma over urinating as close to normally as possible? My own bladder and uterus are falling out (I believe prolapsed is the proper medical term). It hangs out of my vagina and I need surgery to correct it. I must shove it up about 6 times a day. It's been going on for about a year now. I've gotten used to it - a minor inconvenience. I'm on the wait list for a new surgery where the repair lasts forever. I think my husband should suck it up a little bit and be patient. Sounds like he'll be home for a couple months after his cystectomy anyway, and he can learn to be continent then. What do you all think?

One more thing - after nerve sparing surgery, how long does it take till you can have decent sex again?

Eileen G.

yes, it was a urethral stricture. He had it stretched a couple of times, and then just forgot about it. His uro told him that may have contributed to the cancer, but we'll never know. Anyway, when we asked his surgeon about the neo-bladder, he told us that with the history of the strictures, he may end up catheterizing himself anyway. He also said that he was the one that patients came to when they had problems with the neo-bladder, so he had seen a lot of neos that didn't work, for various problems, and he would definately recommend an Indiana in my husband's case.

He's doing pretty good, now. The cathing is going pretty well, but he can't decide which size of cath is the best. He's still got his "emergency" tube that would drain out the bottom of the pouch, which will come out next week.

Stephany in Iowa

Hello,

I'm 64. I was diagnosed with locally advanced bc last September. I was told right up front to expect the worst and hope for the best. I had a very rare tumor, which started at the ureteral juction on the top of my bladder and grew down the back of my bladder, eventually putting pressure on my rectum. The weird thing about it was that the lining of my bladder was fine. However, with the tumor starting in the muscle, I was already in big trouble. I went for four rounds of chemo, had a rest period, then took pre-surgical radiation therapy. My surgeon, Dr. Douglas Dahl at MA General Hospital in Boston told me that in cystectomy, the possibility of a neobladder depends on the extent of the cancer which can only be determined at surgery. I basically went in to surgery wanting the neobladder but had to hope I'd get it.

I did not want a "bag". I didn't want to sleep with tubes and bags in or on the bed. It was a quality of life decision for me. I thought, that under the circumstances, I'd go for the the most "normal" looking (and functioning) alternative, the neobladder. I had to convince myself that the complications and risks of getting a neobladder were worth it. Self-catheterization didn't do much for me, either. The day before surgery, I was still trying to choose and just said, "the hell with it, if you can do it, go ahead."

So I woke up from my ten-hour surgery and intraoperative radiation with a neobladder. The doctors gave me great news. The tumor had not seriously attached itself to anything in my pelvis and they were able to clean it up nicely. In other words, a great result.

With surgical techniques constantly improving, neobladders are getting better and better. Since I started using my neobladder, I have experienced virtually full daytime continence, and only minor nighttime incontinence. I only wear a small pad at night and am completely dry during the day. I have NEVER had to catheterize, not even during my break-in period. I received ultrasounds of the neobladder to determine how well I emptied rather than catheterizations. My urinary retention was only 20ml. I am able to urinate sitting or standing, and when standing, I can hit the back of a urinal with the best of them. I have no bag, no maintenance issues, and to be honest with you, I have to keep reminding myself that I actually don't have a normal bladder. (you need to go based on time-there is no sensation of needing to go) I get up once a night (3 am usually). I go every three or four hours during the day-the same at night. My neobladder is in a word, AWESOME. I had sexual nerve sparing surgery as well. It takes a long time for the nerves to heal, but I continue to progress. Post-op is a lot of work, but to me, it was well worth it.

It's almost like nothing ever happened.

It all depends on the condition of your urethra and the skill and experience of the surgeon. I hope that what I've told you here will help you decide.

Really Dixie...your husband would have a problem looking at a stoma? Mine thought it was the cutest thing he had ever seen...of course its at my navel so probably even you wouldn't know it wasn't a navel.
Pat