RC & NeoBladder

17 years 11 months ago #434 by AzNetRook
Replied by AzNetRook on topic RC & NeoBladder
Dear MrsRich1,

I just want to point out that the dust accumulating in your home is a little less important than you.  If I walked in on a given day and saw the dust, I would give you a second hug knowing that you have been working so diligently on YOURSELF.

Blessings to you dear lady...
Iris

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17 years 11 months ago #430 by MrsRich1
Replied by MrsRich1 on topic RC & NeoBladder
Wow, Linda, this is the most comprehensive information anyone has offered. Please accept my most deep gratitude for it.

It has also given me a bit of hope that I am not a hopeless case. Most of the information seems to say that 6 months is the most usual amount of time that it takes to "train" the neobladder. I love your hint that tells me to hold urine for 2 hours at a time to stretch the neobladder. I don't think I have tried to hold for that long up until now. The problem is that I cannot do that unless I am sitting an doing almost nothing for that length of time. It'll be hard to get anything done around the house doing that and I know that will drive me crazy. Sitting and watching the dust accumulate on the tables and television screen leaves a lot to be desired. Of course, I really don't have to worry about anyone sneaking in here and doing it while I am not watching. I know my husband would if I asked him, but he has already done so much for me that I won't do that. I figure I can sit for a couple of hours, work for a half hour and then sit for another couple of hours at least until the bladder starts holding when I am moving about.

So far I have only been able to hold about 180 CC's at the best of times. Usually only 90-100 cc's are there after 2 hours. As one who aspires to be my Doctor's "Poster Girl" for this type of surgery, I just have to get things working better. I don't have an appointment with him until June 20th so there is plenty of time to work on it.

Thanks once again for all the great information,
Ellen 8-)

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17 years 11 months ago #412 by LindaW
Replied by LindaW on topic RC & NeoBladder
Hi, again, Ellen,
Here is a reference excerpt and link that I thought you might find worth reading:
"Bladder Substitution in Women"
Alan Doherty, MD, Fiona Burkhard, MD, Stephan Holliger, MD, and Urs
Studer, MD
Current Urology Reports 2001, 2:350-356

"Reservoir shape and size

We construct a detubularized ileal pouch as previously described [26]. This technique is the same for men and women. The pouch has a spherical shape, which maximizes its volume for a given surface area. The initial pouch has a capacity of 125 to 160 mL. A well-instructed patient is expected to increase this to 500 mL within 2 to 3 months. A capacity of about 500 mL is important to minimize incontinence episodes. If patients, through fear of urinary incontinence, void more frequently than instructed, they remain with a low-capacity reservoir with high-pressure characteristics. This inevitably leads to nocturnal and sometimes also diurnal incontinence."

and

"Postoperative Care

A fully functioning bladder substitution needs a motivated patient and meticulous postoperative surveillance. The aims of management are to:

Prevent residual
Prevent infection
Prevent acidosis
Expand the pouch
Encourage drinking and salt intake for the first month

Initially, patients are instructed to void every 2 hours, first by sitting while relaxing the pelvic floor and, if necessary, by abdominal straining without pressing downward. Patients without metabolic disturbances are instructed to retain urine for 3 and then 4 hours. Patients are told not to be despondent by episodes of incontinence or dribbling. Usually, incontinence occurs during periods of high intravesical pressure and is more common when the pouch capacity issmall (Laplace's law). Most patients find it easy to understand that high intravesical pressure is required to expand the reservoir. In this way, a bladder capacity of 500 mL can be reached, and continence will ensue. Many patients find this regimen difficult to adhere to. They fear incontinence and urinate frequently. The bladder remains of small capacity, and persistent nocturnal incontinence is inevitable.

Patients are told to avoid alcohol and sleeping pills because these relax the pelvic floor, which in turn leads to incontinence."
www.current-reports.com/article.cfm?PubID=UR02-5-1-02&Type=Article&KeyWords=#F.UR02-5-1-02.01
or
tinyurl.com/7ljos

Although this report listed stretching the neobladder over 2 to three months, I was able to do so in just a couple of weeks. From others, I think the amount of time it takes does vary considerably among individuals. Please keep me posted on how you are doing.
My best to you,
LindaW

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17 years 11 months ago #411 by LindaW
Replied by LindaW on topic RC & NeoBladder
Hi, Ellen,
I had my neobladder sugery in 2/2002 and have done extensive research on bladder cancer and urinary diversions. Neobladders are designed to hold approximately 100-150cc of urine when first constructed. This means a person should be able to go 1 to 1 1/2 hours without leaking. Unfortunately, in reality there are people that find themselves leaking almost constantly once the Foley is removed. It takes time to get the neobladder, pelvic muscles, and brain working in unison. For those that are having incontinence problems after Foley removal, it takes a lot more concious effort to train your new urinary system than those whose neobladder cooperate more readily. I have been able to help several people to regain continence that had the problems that you are describing. I hope my suggestions will bring you the same success.

If continence is to be regained, then your neobladder has to be stretched to hold 400-500cc of urine. Stretching the neobladder to hold this much urine will change it from a high pressure reservoir subject to leaking to a low pressure reservoir that makes continence possible. Most stretching instructions start by saying to hold the urine for 2 hours and increase the time by 30 minutes or an hour ever so many days until you can go about 4 hours and are holding 400-500cc. These instructions worked fine for me and most others, but they need to be modified for people who are leaking so much that there is very little to void at the designated times. Therefore, this is what you can do to help yourself regain continence:

Conciously hold your urine as long as you possibly can without leaking. Whether this is 5 minutes, 20 minutes, or whatever, this amount of time is your start point. Now, add an additional interval of time to this start point and conciously try to remain dry during this time. For some people, this new amount of time might be an additional 5 minutes or it might be 20 or 30 minutes...whatever you feel you can manage without a lot of leakage. Wait your new time interval even if you dribble or leak a little.  Once you are able to go your new amount of time without any leakage or discomfort low in your abdomen, then add another interval of time. Continue to do this until you are able to hold 400-500cc without leaking or lower abdomen discomfort which will mean being able to go 3 to 4 hours between voidings. Once you have stretched your neobladder to hold 250cc or so, you will probably be able to add a larger interval of time when you increase the time between voidings.

Some doctors and patients do not think the Kegel exercises are much help and others think they make a lot of difference. I think that Kegels can only do so much...that once you have strenghtened those muscles to a certain point that is about all the good it will do. The best thing about Kegels in my opinion is that they teach you which muscles you are trying to use to control the flow of urine. Many training neobladder instructions warn patients that changing positions such as from sitting to standing can cause leakage before the neobladder has been stretched or if the neobladder is super full. Apparently, you are having this trouble not upon standing, but when you start walking. My suggestion would be for you to conciously concentrate very hard on tightening the pelvic muscles when you start to walk to see if that will minimize the leakage.  If you are able to hold the urine without leaking for the increased interval of time by remaining sitting and are only leaking when walking to the bathroom, then the neobladder will still be stretched. It is best however to void into a container of some sort so that you know the amount of urine that your bladder is holding between voidings.  There are container than fit between the toliet and the toliet seat(often referred to as "pilgrims' hats because of how they look turned upside down) that are marked in cc and oz and make measuring your urine output easy. In your case, if there is a container you can use where you are without having to walk to the bathroom, it might solve your problem until the neobladder is stretched enough that it is able to hold the urine wihtout leaking while you walk.

I have some references that you might find interesting to read and will list them in a separate post.

I hope you will soon have your incontinence problems solved!
Hope this helps,
LindaW

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18 years 1 day ago #394 by MrsRich1
RC & NeoBladder was created by MrsRich1
I had a Radical Cystectomy on February 17, 2006 (Yes, just over 5 weeks ago). On March 14th the Foley came out and I must say I miss it. At least with the Foley, I was dry both day and night.

I am doing my Kegels and am able to stand without leaking, but the moment I begin to walk towards the bathroom, the bladder begins to empty and by the time I reach the bathroom, there is nothing left.

My question is--how long should I expect it to be before I begin to have some success at training my new bladder.

Thanks,
Ellen

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