New Volume Record for Melodie - 900

16 years 1 month ago #13697 by mznoregrets
Replied by mznoregrets on topic New Volume Record for Melodie - 900
Hi Pat,

It sure does- my "signal" to void is very much like a labor pain! As far as volume - again - I was not once told to measure so I have not. I wonder sometimes tho.
God Bless, Holly

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16 years 1 month ago #13692 by Patricia
Replied by Patricia on topic New Volume Record for Melodie - 900
Thanks for the links Linda...i had found some of these on the neo previously and wish i had saved the link for the Koch pouch. I remember my first visit back to The Cleveland Clinic after cystectomy and my surgeon told me about a male that he had done a neo on and it was holding...are you ready..?.....l800cc's.......Talk about Floppy!......I guess Dr. Gill went back in there and did a successful modification. I wondered if he was a big beer drinker!!? There are certain things that will fill my Indiana up rather quickly...if i'm on an antibiotic...whenever i have a CT scan...and if i drink beer which i rarely do anymore.
In the beginning i found myself so sleep deprived that when i finally accomplished sleeping 5 hrs or more i became a much happier person. My pouch generally warns me when to empty..it contracts like a labor contraction..and if i don't pay attention it will leak. I'm not sure that happens with a neo? Pat

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16 years 1 month ago #13681 by LindaW
Replied by LindaW on topic New Volume Record for Melodie - 900
Hi, Pat,
This is in regard to your request for literature on ruptures of neobladders/catherizable pouches. My info pertains to neobladders. For all I know, Indiana pouches may have a leak point that would prevent rupture. However, if any diversion is completely hypercontinent and allowed to get greatly overdistened, there is a chance for rupture. Ruptures of neobladders are rare because patient compliance keeps most from being in danger of rupture, but ruptures do happen and usually from overdistension. One of our e-mail listserv members let his neobladder get too full and unfortunately had a fall which ruptured his neobladder. Acccording to one abstract in PubMed: "Nineteen articles have been published since 1985 on spontaneous neobladder rupture..."
tinyurl.com/3yxhw6
Here is another excerpt and link from PubMed:
"The spontaneous rupture was evidently caused by overdistension of the ileal neobladder in four of five instances. In addition to overdistension, a second factor such as minor blunt abdominal trauma or urethral occlusion was identifiable in two instances. The rupture occurred in the right upper corner of the ileal bladder in four of five instances and led to acute and severe abdominal pain.
...CONCLUSIONS: The circumstances of the cases described suggest that late spontaneous rupture of an orthotopic ileal bladder replacement is not related to the surgical technique but rather to factors of patient compliance and medical management."
tinyurl.com/2jma8u

Continent urinary diversions are designed for a maximum volume of approximately 500cc. A person that never stretches his diversion to hold 400-500cc usually has incontinence problems because the unstretched pouch is a low volume, high pressure reservoir. A person that lets his neobladder CONTINUALLY(this does not apply to maybe sometimes, but not often)stretch to hold 900+cc runs the chance of developing hypercontinent problems. A properly stretched neobladder holds 400-500cc(about 2 cups) and is a high volume, low pressure reservoir. I do not understand the mechanical engineering or physics principals behind this but those that do designed these diversions.

Most guidelines for neobladders list voiding once during the sleep cycle. However, this is a quideline, not an absolute rule. The magic number is not the hours one goes between voiding, but the volume that is voided. So, if you are able to sleep for longer periods of time and are still keeping the volume around the 500cc mark, then all is well. My urosurgeon told me he wanted me to stop fluids at 7PM and to get at least 5 hours of uninterrupted sleep. However, stopping fluids in the evenings makes me very unhappy, so I prefer to drink as much as I want and to void around the 3-3.5 hour mark and then again 4 to 4.5 hours later. This works well for me, but probably would not for many others. One of the best pieces of advice my urosurgeon gave me was that I should remember that guidelines are not rules and to use common sense when applying them.
LindaW

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16 years 1 month ago #13678 by Melodie
Replied by Melodie on topic New Volume Record for Melodie - 900
Very Interesting comments....thanks everyone for your response.

Alanna, your comment about the sodium in chicken soup may well be the culprit. It seems when last time I had a very high volume like that I had eaten chicken soup. I am much more proned to dining on soup when I am not feeling well...it's a comfort food for me, as well as watermelon. So these two I must watch.

And goodness....had asparagus for dinner tonight....so I will emply sooner tonight rather than later. Melodie

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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16 years 1 month ago #13592 by dmartin12358
Replied by dmartin12358 on topic New Volume Record for Melodie - 900
This is an interesting thread, particularly since I've made a major (for me) change in my sleeping/voiding habits.

Previous, as Linda described, I used an alarm for the past 2 1/2 years to wake up after 3 1/2 hours after bedtime to void my neobladder. Was continent 99% of the time at night. Problem was that due to other life stresses, sometimes I had difficulty falling back to sleep after the nightly voiding. Sometimes stayed up another 2 to 3 hours, which meant that when I fell back to sleep (around 5 or 6 AM), I needed another 3 hours of sleep. I kinda sorta restricted my fluid intake at night.

After seeing Dr. Stein recently and asking him about the advisability of taking sleeping pills, he was pretty adamant that pills were not the path to take. Rather, he told me to just go to bed and sleep through the night. So I've been dong that for the past week or so. I now restrict my fluid intake after 6 or 7 to no more than a beer or a glass of wine or two. Bedtime is 10:30 to 11:30. I've been waking up MUCH more refreshed, sleep anywhere from 5 to 6 hours before I wake up (the wake up urge seems to be precitated by an urge to urinate). I've been measuring my fluid output after I do wake up, it varies between 400cc to 500cc or so (similar to Pat). I now wake up with my underwear damp (don't wear a pad, but may start).

I also have observed that sleeping on my back is much more likely to result in leakage as compared to sleeping on my side. Similarly, when lying on my back on the couch watching a movie, the urge to void (and slight leakage) is much more noticable as compared to lying on my side. When this happens, I can get up and walk around and delay voiding for quite some time. There is something about the design of the neobladder that seems to predispose it to leakage when on my back. This was confirmed to me by the x-ray technicians who performed a recent urogram. They commented that they leave neobladder/pouch patients on their side when making sure that x-rays taken are good (rather than on their back) because of the leakage issue.

I've eaten foods that have acted as a diuretic. Also, I've noticed that bowel movements are related to more (or less) voiding.

An important habit, which most seem to have, is to periodically keep track of fluid output. Restricting fluid intake at night is an important technique I use to try and avoid a floppy bladder. Though as noted, I start to leak, when sleeping on my back, once my bladder reaches 400cc or so. A good thing, I think.

Dan

Dx 7/04, CIS + T1G3, Age 50
2 TURBTs
12 BCGs
Cystectomy 8/05 USC/Norris
So far, so good (kow)

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16 years 1 month ago #13590 by Patricia
Replied by Patricia on topic New Volume Record for Melodie - 900
Just for the record i do sleep all night..8 hrs and empty from 450cc's to 600cc's. I rarely drink anything after dinner. Pat

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