What should I expect at my first post-surgery office visit?
At roughly 3 weeks after surgery you will undergo an X-ray of the bladder to make sure that the bladder is well healed. This is called a “cystogram”. If the cystogram shows no leak, the catheter in the urethra (penis or vagina) will be removed, while the tube through the skin into the neobladder will be plugged. You will go home and try to void every 2 hours. After each void, unplug the catheter to see if there is any urine left over in the neobladder. Record the amounts that drain from the catheter, each time you unplug it. If the residual urines that are left in the bladder are consistently less than 150 mL, the catheter will be removed in the office, 1 to 2 weeks later. The hole in the skin that the tube is removed from, will close by itself over a couple of days and is not sutured closed.
How do I learn to void and learn to achieve urine control?
Once all the catheters are removed from your newly constructed neobladder, it will take time for the new bladder stretch in capacity. Most neobladders initially only hold 150 mL or so of urine. Depending how much you drink you may need to void every hour or 2. The more you drink, the more frequent you will need to void. Use common sense.
The newly constructed neobladder is small and thus more likely to leak urine. Over a few months, the neobladder with stretch in size, so eventually it will hold 400-600 ML of urine. When the neobladder eventually stretches to a large size, it becomes a low pressure reservoir, making urine control possible. Don’t be discouraged if you are leaking right after all the catheters are removed. A neobladder is an investment in time – better quality of life and urine control but only after weeks to months.
After all the catheters are removed, you will need to re-learn how to void. You will not have volitional control over your neobladder. The neobladder is just a floppy bag that holds urine. It does not squeeze or contact on it own. You only have control over your external sphincter (valve), that you will to need to relax during voiding. Once you relax your external sphincter, you will then need to use you belly muscles to squeeze the urine out of the neobladder. You will use the same abdominal muscles to squeeze the neobladder as you do if you are constipated are trying to push the stool out. That said, it is best to learn how to void sitting down. As you contract you belly muscles and push to squeeze the neobladder you might pass wind (fart) or pass a small amount of stool. To prevent this embarrassing event, sit down the first few days you void.
In the first few weeks after all the catheters are removed, try to hold your urine in for 2 hours to three hours. Do timed voids. In other words, void by the clock, whether you feel like voiding of not. The best way is to set an alarm on your smart phone to ring every 2 to 3 hours to remind you to try to void. After a few weeks, increase the voiding interval to every four hours. In the first few weeks it is helpful to periodically measure your urine output. An easy way to do this is by using a plastic collection container (that has ounce and ml markings) that fits between the toilet seat and toilet bowl. This plastic container is often called a “hat”. Ask the nurses for one at the time of your initial post-surgery office visit. You can able purchase a “hat” at a local medical supply stores. They are inexpensive.
At what time intervals should I try to void?
First, determine the time interval between voiding and when you usually begin leaking. Whether it is every 1 or 2 hours, this is your starting point. Now, you need to add time to this and consciously try to hold back any urine that is trying to leak out. Even if you dribble a little bit or feel discomfort in your lower abdomen, continue to consciously try to hold back the urine for the new amount of time. Once you can hold the new amount of time without leakage or dribbling or discomfort, then add another half hour of time and once again consciously try not to leak or dribble during your new time interval. Continue doing this gradually, until you can go 4 hours or so between voiding and have a capacity of 400cc to 600 mL of urine. Although this will be time consuming and requires lots of concentration, it is necessary to stretch the neobladder, so that it can function properly.
Is it normal to leak urine during the nighttime?
Most people achieve daytime urine control well before nighttime continence. Don’t get discouraged – as it is common to initially leak at night. In the first few months, it is a good idea to always void before going to sleep and to set an alarm clock 4 hours after bedtime, to wake and void. You might need to use a pad or even pull up for a while until your bladder stretches in size. If after 3 months you are still leaking at night and find it very annoying, there is medicine you can take to help (ask your doctor, but common names are desmopressin or imipramine).
What final size of neobladder should I aim to stretch my neobladder?
The maximum capacity goal of your neobladder is 400 to 600 ML. Stretching it bigger is not better. If the bladder is allowed to consistently stretch to volumes close to a liter (1000 mL), it becomes a "floppy" bag that cannot drain completely. An over stretched neobladder folds on itself and is unable to drain completely. An incomplete draining neobladder is prone to urinary tract infections, bladder stones and mucus balls. An overstretched neobladder may thus require regular and daily self-catheterization through the urethra, to help it to drain.
What can I do if I am unable to properly empty my neobladder on my own?
Hyper-continence is defined as the inability to adequately empty urine from the neobladder. Up to 30 to 50% of women and roughly 10% of men with a neobladder are hyper-continent. Some women initially have several months of voiding and being able to empty their neo-bladders adequately, but later lose this ability and become hyper-continent.
If you are unable to fully empty your neobladder of urine, you will need to learn how to do intermittent self-catheterization. This means you will need to push a small catheter through the urethra into the bladder and drain the urine. If you are a man, this means passing a catheter via the penis. This is annoying to do, but not painful, as the prostate has also been removed. Passing a catheter through the prostate is why patients complain of pain with catheterization. If you are a woman this means passing the catheter through the urethra, right above the vagina.
Self-catheterizing is a clean procedure and not a sterile one. Thus just wash your hands with soap and water or a hand sanitizing wipe (common brands are “Wet Ones” or “Purell”). No need to use gloves. After washing your hands, then clean the head of the penis with a sterile wipe. If you are not circumcised, you will need to pull back (retract) the foreskin first. If you are not circumcised we suggest using two wipes, one for the foreskin and the other for the head and urethra.
The easiest way to perform self-catheterization as a women, is to sit backwards on the toilet bowl. Face the wall, and this will keep your legs widely apart to make passing the catheter easier. After you have washed your hands, clean your urethra with two baby wipes. With your legs spread apart, use two fingers to clean the inner folds of the labia. Wipe from front to back. Use a second wipe to clean over the opening the urine comes out (the urethra), just above the opening of the vagina. Place your left index and first finger in the vagina. Then with your right hand pass the catheter right above your fingers in the midline. If you are having trouble finding the urethra, place a small mirror in front on the water bowl at the level of the toilet seat. This way you can catheterize under direct vision. You might need to use the mirror the first few times until you get used to knowing where your urethra is. Make sure you use a 14 Fr short female self-catheter. The female catheter is shorter and more rigid, and thus easier to use.