Who Needs Sleep? Not My Neobladder
I know when I was first diagnosed 8 years ago with bladder cancer, I hit the interwebs like a piranha on the move in a horror movie. I consumed every bit of info I could. Unfortunately, that wasn't a great strategy, as there is so much out there and it can be difficult to sift through. With that, I also discovered a lack of direction on sleeping with a neobladder.
Dr. Google is not to be trusted
As many of you found out after your diagnosis, anytime you search for information related to health issues on the internet you will always – and I do mean always – end up finding the worst possible outcome for your search criteria. Stuffy nose? Cancer of the septum. Hiccups. Hold tight because that could mean paralysis of the left diaphragm connective tissue. That's not a thing, but you get my drift. The rabbit hole of "possible" causes and outcomes is infinitely deep.
Advice from one who knows: take all of it with a grain of salt and rely on your medical provider.
Internal vs. external diversions
Not once during my web search frenzy on bladder cancer did I see a real discussion about how your sleep routine might change with bladder cancer and the addition of a neobladder.
I did see discussions on how you can buy a larger external pouch that you can hook up with an external catheter (men…) to get through an entire night without having to empty it out. But that was for an external diversion. I didn't see much about the sleep issues you might have with a neobladder.
Sleeping with a neobladder
So, if you are thinking of a neobladder as your diversion option take the following as one man's experience. Again, your mileage may vary. Your doctor is the best source of information for your specific circumstances.
Every 4 Hours
A neobladder starts out as a small pouch made from part of your ileum and attached, pretty much, where your original bladder was inside the abdomen. The surgery removes some of the muscles used to hold your urine With the original equipment, you need to "retrain" your body and learn to control other muscles to do the heavy lifting and keep you from leaking. At first, the neobladder is small and holds only 100 ml or so of urine, but over time you train your neobladder to hold increasingly more fluid, to a point.
Volume retention, doing the math
My doctor said a neobladder gets large enough to hold about 400 to 450 ml of urine - it's a good target. If a neobladder gets too big it can cause other issues. Again, check with your health care provider for your bespoke advice. I heard most people produce about 100 to 150 ml of urine every hour, so the recommended volume for a neobladder equates to roughly 3 to 4 hours of urine production before you need to take a trip to the bathroom.
That production schedule slows down a bit when you sleep, but not enough to get through 8 hours of sleep without emptying. Therefore, you need to wake up to go during the night.
Tips and managing sleep with a neobladder
It's not that big a deal at least for men of a certain age, particularly men my age. A once-a-night trek to the bathroom is pretty normal. Maybe that is why we get ornery in our old age?
But I digress. Getting 8 hours of continuous sleep is recommended for good health. Darn if you do, darn if you don't. I have done what I can to modify my life to get the most uninterrupted sleep I can, which includes:
- Limit your liquid intake prior to winding down for bed, including foods that have a higher water volume, like fruits and vegetables.
- Drain before bed. I work hard and really push out the urine and get every last drop out right before bed.
Since adopting these routines, I have switched from every three hours to every four hours at night. That change has improved my sleep and ultimately my mood.
One thing I have not tried is to simply put on an adult diaper and not set an alarm and let the neobladder do its thing. If anyone reading this uses that method let me know. I would love to see if I can get more than a couple of 4-hour naps each day.
Truth: it sucks, but you get used to it
Sure, I do long for the old days of dropping into bed at 10:00 pm and not moving until six the next morning. But I also long for the days before cancer and that ship has sailed. Now, however, I'm just happy to be waking up.
Have you talked to your doctor about navigating sex with bladder cancer?