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|Neobladder Questions (M) - Regaining Continence, Fluid Intake|
Incontinence with neobladder in women
Help!We're Facing Radical Cystectomy
Trouble Peeing-selt catheterization / emptying neobladders (M-F)
Another site that lists Valsalva as the method used to void a neobladder:
Here is a powerpoint presentation...must have Microsoft Powerpoint to
From an article entitled "Criteria for Successful Neobladder Surgery:
As for the question about a third opinion, that is up to you. I feel
It sounds like you are happy with the doctor(s) you have an the institution.
Good luck and God Bless
I was extremely impressed with my surgeon, Dr. Michael Blute, and all the Mayo personnel who took care of me. I'd highly recommend Mayo. I have no regrets about my decision to have the surgery, and for the first time in two years have a very positive outlook about my future. I go back to Mayo in a couple of weeks for some precautionary follow-up tests, to make sure that everything is O.K.
Go to Webcafe's Tales From the Trenches & read Ben Olsen's story for more detailed info on his treatment at Norris. Ben was 50 when he underwent RC here in Denver in 1982. Luckily, he was sent to Dr. Don Skinner when he needed a second revisionary surgery in Jan 1985. Dr. Skinner and the Norris were, and continue to be, light years ahead of most when it comes to genitourinary cancer. We are fortunate to be able to go to Dr. Skinner for biannual checkups. Last Oct, along with the checkup, Dr. Stuart Boyd replaced Ben's 18 yr old penile prosthesis with the "millenium model."
Over the years we've heard from people from all over who need info -
heard just about everything. Please feel freet o email or phone if you
think we can help.
I know that you've gotten several replies recommending RC ASAP. Given
the high likelihood of recurrence, if I were your husband, I'd give BCG
+ Interferon a try. I had a single, high-grade tumor too, though not
Please let us know what the latest path report shows. If there is any
We are pretty much just readers and we respond to individuals when
Dear Web Cafe-ers,
Please refresh me as to your plans and the timing of them regarding
agree with you as far as it being a "gift" in the fact that we were given a reality check. I can tell you sincerely that it has changed my life (for the better) not that I was a bad person before but I am a better person now. Mary
Hello again and of course good luck with your plans for July 2 with the
In addition to the BC Cafe, I attend a "Wellness Community"
cancer support group led by a Phd.Psych, I have another "personal"
Neobladder Questions (M) -
I had a RC (radical cystectomy) and neobladder construction exactly one year ago. I will be 58 on Thursday, so I'm not far off in age from your friend.
I am not in particularly great shape, although I am fairly active. I
I am continent, more or less, at night. I wear a Depend adhesive pad
I recently sat through the 2 1/2 hour movie Harry Potter and I am not
I would be happy to answer any specific questions your friend has. He
For about 18 years (18 to 37) I was a moderate smoker. Otherwise I was in good health. I was a high school athlete and maintained a strong exercise discipline over the years including brisk walking of 2 to 5 miles daily the last 7 or eight years.
With all that said, since the occurrences of CIS were getting more frequent
and couldn't be stopped, I was advised to have a radical cystectomy in
September of this year. The recommendation was the ileal neobladder since
I was in good health otherwise. That surgery was done 10/16/01, so I am
almost 2 months post surgery.
Where am I now? I started with bathroom visits very 20-25 minutes when the catheter was removed 3 weeks after surgery. Now 5 weeks later I am running an hour to an hour and a half between bathroom visits. I lost about 20 pounds during surgery, but have gained back 6 to 8 pounds. I now feel that I am continent during the day for the most part, but the night is a different story. I wear the necessary Depends and accessories and wake myself up every 2 hours 15 minutes and change as necessary. It is getting better, but I would love to achieve night time continence on a par with that which I have during the day.
You should know that I am a positive person, and I am grateful to be in my present state. I will do anything and everything that is required to reach an optimum state (I even do Kegal exercises while waiting at stoplights). I also am impatient and I probably will get there like you have in due time. The changes have been significant in a relatively short period of time (25 min to 1 1/2 hours bathroom stops in about 3 weeks), so I want to make sure that you do not think I am complaining.
At this point I am not concerned about sexual potency or lack thereof. Before I had surgery my physician told me 6 months with Viagra. We will see.
So in conclusion, any advice from your experience would be appreciated. I particularly would like your response to these questions.
1. What is your maximum time between bathroom visits?
> I wear the necessary Depends and accessories and wake myself up every 2 hours 15 minutes and change as necessary. It is getting better, but I would love to achieve night time continence on a par with that which I have during the day. <<
That is the common reaction of most folks to mastering the neobladder. Days are fairly easy but nights take much more time.
> I particularly would like your response to these questions. 1. What is your maximum time between bathroom visits? <
During the day, from three to five hours, as an estimate. I don't time
At six months my neobladder could hold 550 mls. Recently it held 950
> 2. Is the time different between day and night? <
Yes. At night the neobladder begins to leak about two to three hours
> 3. Do you have any hints on how to achieve night time continence?<
I hit upon using a vibrating alarm clock, at the suggestion of a former
At about nine months post surgery I simply quit using the alarm clock.
I cannot explain why I stopped leaking so much that the sheets became
wet. I just did, and it happened in less than a week. Somehow I become
aware that the bladder is full and starting to leak. I doubt if this would
have been possible much earlier, as the large capacity of the neobladder
during the day seems to correlate with better night time
A couple of weeks ago we stumbled on to a wool fleece mattress pad I
> 4. How long did it take you to get to your present state (maximum
This has been a continuing process. I was in very good shape after 10
The big change is more psychological than physical. At some point
> John, again thanks for your note to Bonnie and for your time answering > the questions I have raised. <
I'll be happy to answer any other questions you have and share any "work arounds" I have discovered.
Good luck on your continued recovery. Your lymph nodes were clean and the radical cystectomy has eliminated the source of your cancer growths, so you may experience no further problems with bladder cancer.
> John, one of your answers reminded me of an additional question.
I'm not sure I have more of a thirst now, but I do find that as bed time
I have seen a number of recommendations that a high water intake is very
helpful, especially in keeping the mucous discharges from getting too
thick and clogging up the urethra. (I doubt that anyone with a
I just drink what I want and expect to get up at least once. Some of
Merry Christmas Ray,
Thanks for your answer. I had neglected to mention that I live in Cary, North Carolina (Research Triangle area). Since my surgery, the weather has continued to be very warm and humid even though it is almost winter. This probably has something to do with my thirst. You point is a good one...the more liquid intake, the less mucous is likely to present a problem.
I am with you. I always preferred wonton soup anyway when Chinese was my fare, but I will assure you that I will never have egg drop soup again regardless of the circumstances.
From one positive guy to another, thanks a million. You have been very helpful.
Merry Christmas and a Happy New Year!
I am almost three months neo-bladder post-op and am having a heck of
If you find the trick, please let me know.
If you're not already doing so, limit your fluid intake in the evening. I used to drink nothing after 9 pm, others have stopped at dinner time. Also watch your salt intake. I noticed that lots of salt resulted in water retention for me, and when the water wanted out, it wanted out. Reducing the salt seemed to even things out a bit and make it less likely that I would have to void alot in the middle of the night. A doctor told me once that laying down made it easier for your body to remove excess fluid - so maybe reducing the excess will help.
I also noticed that food reduced voiding - I think due to the water being used for digestion. A light snack before bedtime might help (but you might have to walk the calories off the next day!)
I had to put my alarm clock on the other side of the room so I wouldn't turn it off and go back to sleep. I get up one time in the middle of my sleep cycle and that seems to work out pretty well. For a long time, I slept with a waterproof pad under me - the type used for a baby changing table. I bought a few of them (measuring roughly 2' x 3') and that way if I leaked, it was less stressful. Simply grab a new one, change and go back to sleep. I'm a side sleeper, so I used a depends gaurd for men turned sideways. If you get the one eyed monster aimed in the absorbent part, it will hold an ocean. If you miss, you'll be in an ocean. It took some experimenting for me to get the pad positioned just right, and I was just about to resort to duct tape when things started to work out.
Kegels. I think you probably know how to do them, but in case you or any other guys don't, imagine hanging a towel on your "towel hook" and doing towel raises. That will help regain the muscle control, but it takes time. Also, make sure you are as empty as possible for going to bed. Try sitting to void, bending forward, whatever seems to work best. Experiment a little. Also, if there's a littl mucous in your urethra, try to get it out before going to bed. I don't think it closes off well when there's a blob of slippery gunk in it.
There's light at the end of the tunnel. I leak only occasionally at night
- haven't done so for about a month, and it was very little. Hope this
helps - and best of luck to you.
Incontinence with neobladder-women
The surgeon I chose for my surgery automatically performed a vaginal tuck during the radical cystectomy - erring on the side on hypercontinence so incontinence was not a problem for me.
RE stamina...it hasn't been very long since this major surgery for you.
Your body is undergoing major repair utilizing your available energy for
that first. Everyone is different.
Were you given instructions about gradually waiting longer between voidings in order to stretch the neobladder to hold more? You should stretch it to hold a maximum volume of 400-500cc. That would mean you would be able to go at least 3 to 4 hours between voiding, depending on how much fluids you have been drinking. I never did have any profusive leaking. When it was past time to empty the neobladder so it was overfull, I would gush when I sneezed, laughed, or created abdominal pressure by taking a deep breath and calling for one of our dogs...learned to go void before doing that one.
I started out being able to hold 100-125cc and made myself wait 15 minutes after the lower abdominal discomfort (sorta' like cramping) started even if that meant slight leakage. Then, when I could go that long without any discomfort or leaking, I added another 15 minutes and continued along those lines until I had stretched it to hold the 400-500cc. Luckily, my neobladder stretched easily so within a month I was able to go the 3 to 4 hours between voiding. I do not know if some designs stretch more easily than other designs. I did not have the Studer like you. Instead, mine is called a spiral or VIP (Vesica Ileal Padovana). For the first 6 months if I waited too long between voidings, I might leak a little or a lot if I had a sudden sneeze. Over time the leaking became less and less. However, even now I do wear a pad because I would rather do that and never have to worry about accidents. Once I could hold 400-500cc volume then I rarely had problems with nighttime incontinence. I did have to set an alarm for 3 hours after I went to sleep to wake me for voiding. Ended up having to move it across the room because I would turn it off and go right back to sleep and wake-up either wet or holding way too much...it is very important not to overstretch the neobladder.
I established satisfactory continence long before I regained my stamina. Some people say that it takes a month for every hour you were "out" for the surgery. Although I could do most things a couple of months out from surgery, it was at least 6 months before I felt I really had my stamina back. In fact, I still fall asleep much easier than ever before in my life and wonder if it is a lasting effect of the anesthesia.
Keep me posted on how you are doing as I hope you are soon able to go
longer than the 90 minute schedule you are on right now. Hope this helps,