CSN Login
Members Online: 16

Training the NeoBladder

ekusel
Posts: 4
Joined: Jan 2006

Howdy Folks,
I am hoping that someone can give me some idea of how long it takes to become continent after RC. I actually miss the Foley and told the nurse who removed it that I would miss it. She said I was the first one who ever said that. Well, with the Foley I was at least able to keep dry.
I'm not even expecting to stay dry at night yet, but an occasional 2-3 hour period of dryness during the day would be nice.
Keeping up the Kegels,
Ellen

pauldan
Posts: 1
Joined: Apr 2003

In Feb 2003 I had my bladder replaced with a new one. I had a problem for the first 2 months after my 7 week stay in the hospital. Use protective underware during the day and at night and don't drink any beer, coffee and other juice that activates the kidney. Have you Dr check the value at the base of the bladder, it may have to be enlarged.
Have a wonderful day.

ekusel
Posts: 4
Joined: Jan 2006

Thanks for the reply. Maybe there is hope for me yet.
Wow, 7 weeks in the hospital!!?!?!? You must have had some complications. Glad you are apparently OK now.
Others have advised me to drink coffee so that the bladder will fill and give me the ability to stretch the neobladder to increase its capacity. I'm sooo confused.
I have no idea what you mean by checking the "value at the base of the bladder." Do you think this is different in women and men?

Thanks again and hope your day is wonderful, too.

Roderick
Posts: 2
Joined: Dec 2012

how did you get the bladder to fill up mine seems to drain whenever it wants but it has only been a week and a half since they started it how long before it stops draining on its own

eyes2
Posts: 13
Joined: Dec 2003

Hi
I was browsing the web site and saw you had a neo bladder. I am hoping by now you have been able to train it.

I was unable to train mine but come to find out my sphincter muscle had gone computz so o oo I had a bladder sling put on. It sortta defeated the neo bladder as I no longer can urinate on my own from my urethra but I self cather which is not bad as I tought it would be. but at least I'm dry and have no openings on my stomach/

Good luck to you, I know my fiend that also had a neo bladder was also unable to train and she did not have a sling but she does self cather.

Good luck hope all is well by now.

flawson233
Posts: 1
Joined: Apr 2006

My husband had his surgery abouot six weeks ago and is trying to learn to train the neobladder some days are better than others so keep the faith and remember you are not alone.

Fluffy2u
Posts: 2
Joined: Sep 2006

Hi: I am trying to connect with someone that has had the Neo Bladder - my husband had his surgery almost five weeks ago and is really frustrated. Was hoping that I can find someone who can relate and help him at the same time?

Barrington
Posts: 1
Joined: Oct 2006

HI I am Barry from Ottawa Canada, since I recieved my neobladder April 5th, 2006. I can really relate to your concerns.

I must tell you that it is not untill after the 3rd month that you really turn the corner. Try to keep a positive mind set good music, books and belive it or not I went back to the happy hour after the 5th week. A couple of marts a day really seemed to help. Also you must get up and WALK every day. You wont go far but gradually increase the distance. Getting outside is great. By the way Idid not take any pills after the operation so no ploblem with a couple of marts.
Control of the bladder comes gradually, after the 3rd month use the pads during the day but you will still need full coverage at nite.
Gradually remove the pads during the day and move to the pads at nite. KEEP WALKING.
For me, after only 6 months I pass water every 2 to 31/2 hours. Pad at nite only as a precaution, but it will be gone soon. I live almost a completely normal life, I am back in the gym, and plan to spend the winter in THailand.
Dont lose confidence and keep positive...the first 3 months are really tough after that you can start your new life ... and belive me it is really worth it.

Hang in there
Barry

J_Jolene
Posts: 3
Joined: Apr 2009

Hello--

My husband had this operation in December and as of mid April is ready to give up. He actually has hyper-continence, probably because he's afraid to drink fluids. Consequently, he has mucus buildup and blockage and is continually cathing which brings on more trauma to the new bladder, nore mucus buildup, more cathing, until he's ready to throw in the proverbial towel. I'm so sorry about your incontinence, a horrible discomfort, I'm sure. But is anyone hiving my husband's problem? He could use any advise you have to offer.

Have a blessed day! Jan

antcar
Posts: 4
Joined: Apr 2009

I had surgery to remove the bladder last Nov 2008 so far my neo bladder is working well I don't have to catherize myself. It takes sometime for it too work be patient and continue doing the flushing, don't let the mucus build up I use to drink lots fluids to flush out all that mucus. I had a suprapubic catheter and the foley catheter when I was discharged from the hospital. I was told to flush the mucus they gave me schedule and a syringe to remove the mucus. I also did the kegel exercise to train the pelvic muscles.
Now I am back at work and my bladder is working fine. I still wear pads a night cuase I leak sometimes when I go to sleep.
My main concern right now is that the cancer has spread to my lungs I am undergoing chemo right now its only 1cm. But I feel fine I had my CT scan last tuesday hopefully the spot in my lung is shrinking or gone. I also changed my diet.
The pathology report after my surgery showed no cancer in the lymph nodes but it may have spread thru the blood vessels. Overall my health is OK I feel much better than last year my tumor was the size of an egg 5 cm I kept urinating blood everyday till the surgery.
I also do acupunture to build the immune system. Hang in there you will be fine. I try to keep a positive attitude.

Antonio

J_Jolene
Posts: 3
Joined: Apr 2009

Antonio--

Thank you for replying and sharing your story. You're back to work! WOW!!! You have a great attitude, the only thing that will beat this stuff!!! My husb was wondering whether he should have opted for the suprapubic, but is giving the normal flow another chance after getting re-opened from scar tissue forming over the opening of the neobladder. Where did you have your surgery? He had his at KU Med in KC. You're doing well keeping ahead of your cancer - our prayers are with you. Pls post how you're doing and how the CT scan came out. One thing you may want to research is deleting animal protein from your diet, if you haven't already. I understand cancer feeds from that, and 'ravediet.com' has much testimony in that light. All the Best!

Jan

antcar
Posts: 4
Joined: Apr 2009

Hi Jan,

I am from Halifax, Nova Scotia, Canada the surgery was done here at Victoria General Hospital. At first it wasa a shock to me to remove the whole bladder, prostate etc. But my surgeon gave me all the facts and I also talked to one of his patients that had the same surgery radical cystectomy. My doctor is a urologist & oncolgist surgeon too, he does neo bladder reconstruction all the time and nerve sparing techniques for erectile dysfunction I had another doctor at first but I wasn't comfortable with him so I ask for a second opinion. I was stage III non invasive in the diverticulum of the baldder when I had the first biopsy.

The Canadian Cancer Society refered me to the acupuncture clinic it has help me a lot my immune system was really down before the surgery it got me stronger. I had Urinary tract infections UTI so many times because of the TURB done by the first doctor I had spasms more blood the urine. I still do acupuncture I am handling the chemo quite well don't have much side effects. Check this out in the internet the Budwig diet google it to find info or you can join the yahoo groups FlaxSeedOil2@yahoogroups.com.
I am into vegan diet I don't eat meat, eggs and dairy except for cottage cheese blended with flaxseed oil fish it still part of my diet as long as it is not farmed fish.
I will let you know next week the results of my Ct scan.
Antonio

30 and out
Posts: 1
Joined: Aug 2009

I had my neobladder surgery in jan. 2008 you have to contract the muscles in and out just like breathing to strengthen the muscles. your body has to create a new way of letting you know when to void. with me its pain in my abdominal so getting sleep is my problem. the neobladder only gives you a 2 to 3hr window before going again

Roderick
Posts: 2
Joined: Dec 2012

how long did it taqke to keep the bladder from vdraining on its own

avet
Posts: 1
Joined: Jan 2013

I had the neo bladder done August of 2011 at Mayo.  The daytime leaking stopped after about 2 weeks. Night time is still a problem.

mac65
Posts: 3
Joined: Aug 2013

I healed in a month and had all bags and tubes removed in 6 weeks and no leaking followed 

willie m
Posts: 1
Joined: Dec 2013

I had my neobladder surgery on 12/05/13 , All went well. I had my catheder out on 12/26/13 and I am leaking when ever I stand up , But if I hold myself until I get to a toilet I can void in the toilet. Has anyone else experienced this ? If I am up standing or walking around the urine may just run right out . I keep reading that it will eventually not leak. At night I wake up often because I have to go , so I hold myself and head to the bathroom. Does any of this sound familier ?

Kim_P
Posts: 2
Joined: Mar 2014

willie,

  I myself went thru the neobladder replacement on 12/10/2013 around the same time you had your surgery. I also have lymphoma and had it since 2001. I had some issues with restrictions in my uters tubes from the kindeny's to the bladder. this caused my creataten levels to go up, and spend another week in the hospital while the ran tubes from the kindeny's out into 2 bage to allow for draniage. I have sence had the tubes removed and now I have stents from the kindeny's to the new neobladder, which seem to help. I also have trouble right now holding urine in during the day going every 1-2 hrs. At night i wear a diper which helps alot to stay dry, however i'm going every 1 1/2 to 3 hrs. I have termendious stomach pains gas..maybee, but they seem to get worse after eating. Bowel movements are spradic, which also might be causing the stomach pains. Can anyone shed some light on this subject. My doctor says it's normal becausing I'm still healing, but to me this just doen't feel right to have this pain on and off for days now. Tynol seems to relive it for the most part, but I have taking the pain pills or any other medication if I don't need to.

Matelot5
Posts: 2
Joined: Apr 2013

 have you found that diet effects leakage of your bladder

 

J_Jolene
Posts: 3
Joined: Apr 2009

HELLO--I'M JAN'S HUBBY---I HAD MY FIRST OPERATION IN DECEMBER. I HAD HYPER CONTINENCE UNTIL MY DR. REMOVED SCAR TISSUE IN APRIL. I NOW HAVE SOME LEAKAGE AND CAN URINATE A LOT BETTER. I AM STILL HAVING TO PUSH AFTER THE FIRST 10 SECONDS OR SO TO TRY TO EMPTY. THIS IS CAUSING ME OVER TIME MAJOR HEADACHES. IS ANYONE ELSE HAVING THIS PROBLEM? I ALSO AM HAVING SOME STOMACH PAINS. IS THIS NORMAL?

antcar
Posts: 4
Joined: Apr 2009

Hi,

What does your urologist tell you? Before I had surgery for the neobladder i was traning my pelvic muscles doing kegel exercises check out the link.
http://www.mayoclinic.com/health/Kegel-exercises/WO00119
Don't strain too much if you can. Over here they would monitor how much urine was retained in the bladder if you retain too much then you have catherize yourself. I only did it once cause I trained myself in using the pelvic muscles sometimes sitting down to urinate it works for me well. Try doing it in intervals I use to urinate almost every hour I would measure the amount of urine.
The stomachs pains is probably caused by you straining too much. Take slow deep breaths every time you urinate. Right now I urinate fine during the days in the evening depends on how much water I drink I would leak.

Talk to your urologist about your situation. Also, just to share with you the results of the CT scan I had last week. The cancer spot in my lungs due to the bladder metastases shrunk from 7mm to 2 mm. The chemo treatment I am undergoing is working I still have three more cycles to go God willing I get into remmission after that.
Regards

DavidL
Posts: 1
Joined: Dec 2009

So, I had my surgery on Dec. 1, 2009 and by and large I'm doing pretty well. I had a great deal of difficulty with diarrhea post surgery, but I seem to be getting a handle on that now. (Made me weak and couldn't keep any weight on) I still have diarretic moments and I wonder if it could somehow be related to the mucus production of the new bladder? Anyone else had this difficulty?

I tend to be an overachiever, so I'm not too patient about getting control of my continencey. I sort of get it, but there are times when mucus is coming out and I have no control. I still leak quite a bit and I'm thinking it's because I became so complacent with a catheter for that period. I walk and exercise as much as possible, but that's when I seem to have less control. As it stands, I almost need to go pee every 20 or 30 minutes. What's everyone else's experience? Trying to learn. David

mac65
Posts: 3
Joined: Aug 2013

i had my neo bladder surgery in dec. 2012 I had stage three cancer they removed the bladder prostate and lymph nodes. I have had 15 uti's and I have had to use a catheter 2/3 times a day because of the mucus build up I drink plenty of water and void about 10 to 14 oz. Each time but I have to strain to go so I decided to use a size 18 french to void and flush.

    

mac65
Posts: 3
Joined: Aug 2013

i never really had problems with leaking unless I was too full

 

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network