Neo Bladder

I would like to speak with someone in my age group (70) who has had a neo bladder reconstruction.   I am having my surgery on 8th September and know very little about the aftermath of having a neobladder.   I am told by the surgeon that I could be incontinent during the day and may have to catheterise myself.  I would also need to learn to use my stomach muscles to empty the neobladder.     This all sounds quite daunting and is pushing me towards having a urostomy bag.

I would appreciate anyone who has a neobladder replying to my queries and let me know their experiences.   David

hi - i am 7 weeks post surgery of having neobladder- i like you was in complete turmoil over having bladder or bag - having read very negative posts on many sites regarding problems with the neobladder. i am a 59 yr old female and our plumbing apparently makes things a little more complicated - as well as bladder removal i also had to undergo a complete hysterectomy at the same time (something you men do not have to undergo ) i had the last two catheters removed last week and all the horror stories i had read about have NOT happened - am a bit leaky but can pee a full bladder and hold for up to 4 - 5 hrs . if you are fit GO FOR IT - the bag is the easy option but is also a one way street. if for ANY reason the bladder just does not work you can have a bag but not the other way round i just wish oh how i wish i had read ANYTHING positive about the neobladder before i had my op. but i now know it was TOTALLY the right way to go. having said all that my surgeon was probably the best in the whole of the south east of england and he is on my patch. GOOD LUCK hope this helps

 

On 8/21/2008 Silver Fern wrote:

I would like to speak with someone in my age group (70) who has had a neo bladder reconstruction.   I am having my surgery on 8th September and know very little about the aftermath of having a neobladder.   I am told by the surgeon that I could be incontinent during the day and may have to catheterise myself.  I would also need to learn to use my stomach muscles to empty the neobladder.     This all sounds quite daunting and is pushing me towards having a urostomy bag.

I would appreciate anyone who has a neobladder replying to my queries and let me know their experiences.   David

       Hi David:

I am not quite your age (52) but I have a neo bladder,and mine works very well, I do have some light dribbling during the day but it's not too bad to handle.I just wear a pad in my underware. I had my urithra re-attached I didn't want to have to carry a plastic tube with me all the time.

     As for making it work, mine works much like my old bladder did, I just have to push a little harder, not real hard. For myself I really did not want anything outside my body that I would have to deal with, bags leak too. I do have some trouble at night, sometimes I don't wake up until I'm wet, but to me that's not too bad I can live with that.

    Yes you will have to catheterise yourself that burns a little, but not too bad. Another thing I pass some mucus when I urinate.

     The only problem I have is my cancer is back and I have to fight it all over again. 

     I hope this has been a help to you. 

    

I am 61 years old and had a neobladder 4 1/2 years ago. It is absolutely the right thing to do. I urinate very well, have no problems during the day, am mostly continent at night while I sleep and have never had a need to catheterize myself.

I have no reservations or doubts that it was the right thing to do for me. Make sure you have a surgeon that is competent and does enough of these so that the reconstruction goes well.

 

Good luck, thank G_D we have this option.

My husband had a neobladder in Oct of 2007.  He is 67.  He has never had to catheterize himself and is continent during the day.  Since he no longer has any sensations to urinate, right after surgery he set an alarm to awaken every 2-3 hours at night.  He also needed a pad at night.   He now uses a condom/catheter product from www.Alphadry.com.  It has been a godsend.  I am a much happier person, since there is no alarm waking me at night, and I no longer have to change bed linen in the middle of the night.  The cost of the device is partially reimbursed by Medicare and our part-d provider.  I know my husband would encourage you to have the surgery even at 70. 

 

 

On 9/12/2008 Skylid wrote:

I am 61 years old and had a neobladder 4 1/2 years ago. It is absolutely the right thing to do. I urinate very well, have no problems during the day, am mostly continent at night while I sleep and have never had a need to catheterize myself.

I have no reservations or doubts that it was the right thing to do for me. Make sure you have a surgeon that is competent and does enough of these so that the reconstruction goes well.

 

Good luck, thank G_D we have this option.

 

My husband has bladder cancer. It has spread to the right ureter/kidney.  The prostate is clean. His urologist in Mississippi reccomends removal of bladder/prostate/ureter/kidney but she can only do the bag.  She sent us to Nashville.  The doctor there said to remove the ureter/kidney and leave the bladder/prostate.  He can do the neobladder but says that normally they are not what they are cracked up to be.  We need some reccomendations.

 

On 9/28/2008 grandeb3660 wrote:

 

On 9/12/2008 Skylid wrote:

I am 61 years old and had a neobladder 4 1/2 years ago. It is absolutely the right thing to do. I urinate very well, have no problems during the day, am mostly continent at night while I sleep and have never had a need to catheterize myself.

I have no reservations or doubts that it was the right thing to do for me. Make sure you have a surgeon that is competent and does enough of these so that the reconstruction goes well.

 

Good luck, thank G_D we have this option.

I HAD MY SURGERY AT USC NORRIS CANCER CENTER WITH DR DONALD SKINNER.

WHILE I DO NOT KNOW THE SPECIFICS OF YOUR CASE I WOULD GET ANOTHER OPINION. IT IS MY UNDERSTANDING THAT THE PROSTATE ALWAYS COMES OUT WHEN THE BLADDER COMES OUT. THYERE ARE INSTANCES WHEN THEY CAN NOT DO A NEOBLADDER AND YOU HAVE A COUPLE OF OTHER ALTERNATIVES. THE BAG OR CATHETERIZATION. NORMALLY IT IS EITHER BAG OR NEOBLADDER

I WOULD CONSULT WITH DR. SKINNER AND SEE WHAT THEY SAY. IT MAKES NO SENSE TO LEAVE THE BLADDER AND TAKE OUT THE KIDNEY IF YOU HAVE CANCER IN THE BLADDER. I DON'T UNDERSTAND HOW THAT IS POSSIBLE.

CONTACT USC IF YOU WANT. THEY ARE TOP LEADERS WORLDWIDE AND DID A GREAT JOB FOR ME.

GOOD LUCK. IF I CAN BE OF FURTHER HELP LET ME KNOW. MAKE SURE THOUGH THAT WHEREVER YOU GO OR WHATEVER YOU DO THAT YOU FULLY UNDERSTAND WHAT IS GOING TO BE DONE AND WHY AND WHAT ARE THE ALTERNATIVES. DONT BE AFRAID TO ASK QUESTIONS UNTIL YOU KNOW!!!!!!!!!!!

LUIS

 

My husband has bladder cancer. It has spread to the right ureter/kidney.  The prostate is clean. His urologist in Mississippi reccomends removal of bladder/prostate/ureter/kidney but she can only do the bag.  She sent us to Nashville.  The doctor there said to remove the ureter/kidney and leave the bladder/prostate.  He can do the neobladder but says that normally they are not what they are cracked up to be.  We need some reccomendations.

 

We just got back from the urologist in Hattiesburg, MS.  She is setting a date for the kidney/ureter removal.  After this surgery, she going to do mytomiacin(?) treatments at the reccomendation of Dr. Rodney Davis at Vanderbilt in Nashville.  He still wants to leave the bladder at this time.   The thought scares the heck out of me--it is like playing russian rulette with my husbands life.  Where is your doctor?  Would you be willing to call my husband and tell him about your experience?

On 9/28/2008 Skylid wrote:

 

On 9/28/2008 grandeb3660 wrote:

 

On 9/12/2008 Skylid wrote:

I am 61 years old and had a neobladder 4 1/2 years ago. It is absolutely the right thing to do. I urinate very well, have no problems during the day, am mostly continent at night while I sleep and have never had a need to catheterize myself.

I have no reservations or doubts that it was the right thing to do for me. Make sure you have a surgeon that is competent and does enough of these so that the reconstruction goes well.

 

Good luck, thank G_D we have this option.

I HAD MY SURGERY AT USC NORRIS CANCER CENTER WITH DR DONALD SKINNER.

WHILE I DO NOT KNOW THE SPECIFICS OF YOUR CASE I WOULD GET ANOTHER OPINION. IT IS MY UNDERSTANDING THAT THE PROSTATE ALWAYS COMES OUT WHEN THE BLADDER COMES OUT. THYERE ARE INSTANCES WHEN THEY CAN NOT DO A NEOBLADDER AND YOU HAVE A COUPLE OF OTHER ALTERNATIVES. THE BAG OR CATHETERIZATION. NORMALLY IT IS EITHER BAG OR NEOBLADDER

I WOULD CONSULT WITH DR. SKINNER AND SEE WHAT THEY SAY. IT MAKES NO SENSE TO LEAVE THE BLADDER AND TAKE OUT THE KIDNEY IF YOU HAVE CANCER IN THE BLADDER. I DON'T UNDERSTAND HOW THAT IS POSSIBLE.

CONTACT USC IF YOU WANT. THEY ARE TOP LEADERS WORLDWIDE AND DID A GREAT JOB FOR ME.

GOOD LUCK. IF I CAN BE OF FURTHER HELP LET ME KNOW. MAKE SURE THOUGH THAT WHEREVER YOU GO OR WHATEVER YOU DO THAT YOU FULLY UNDERSTAND WHAT IS GOING TO BE DONE AND WHY AND WHAT ARE THE ALTERNATIVES. DONT BE AFRAID TO ASK QUESTIONS UNTIL YOU KNOW!!!!!!!!!!!

LUIS

 

My husband has bladder cancer. It has spread to the right ureter/kidney.  The prostate is clean. His urologist in Mississippi reccomends removal of bladder/prostate/ureter/kidney but she can only do the bag.  She sent us to Nashville.  The doctor there said to remove the ureter/kidney and leave the bladder/prostate.  He can do the neobladder but says that normally they are not what they are cracked up to be.  We need some reccomendations.

 

 

I am a male, 55 and 8 weeks ago had a neo-bladder reconstruction. Things are going okay but as you probably know when I cough or sneeze I discharge so use a mans diaper for absorbtion. Overall surgeons were very happy with results and through my various tests I show no Cancer inother organs. It was up to me so I chose not to do Chemo at this time just monitor me. Thanks and good luck to you.

I had the neo-bladder surgery Oct 07.Recovery was better than I thought, after lots of anxious days and nights pre operation. within 2 months was able to travel again, day time control recovered quickly, night time is manageable but leakage still a problem at times. Self cath 1 to 2 times a day - morning and night. but no big deal, and I would have never thought I could manage all this.

My surgeon had done the procedure over 200 times, and I believe this helped in eliminating any complications. I had 1 urinary tract infection post operative. Otherwise I have been fine. I travel globally in my work, and manage my life as normal. 

The usual side effects of night time leakage is the main problem, but it beats worry about Bladder Cancer.