Yes, I'm a 10 percenter. But before we get all excited thinking I just won the lottery, let me explain: The doctors told us that 90 percent of patients who get a Neo-Bladder will be continent during the day and 80 percent during the night. That leaves 10 percent of patients who will be continent during the day but not at night. (This makes sense if you don't think too hard about the math.) But fortunes change (both financial and otherwise) and even though I have been in this 10 percent group since surgery, I believe I am now becoming a member of the 90 percent.
It's been over two years since my surgery and I believe my body is still adapting to its new internal organization. This has come as a pleasant surprise to me because I really didn't want to go to bed for the rest of my life wearing a maxi-pad (or worse - a diaper). And it is a terrible (helpless, degrading, depressing, maddening, etc.) feeling to go to bed each night not knowing whether you will wake up soaked -- one or more times during the night. Parents of bed-wetters please take note.
My urologist told me before the surgery that some people -- mostly women(?) -- opt for the bag because they can't face this possibility. But I have refused to accept this fate -- that I have seemingly been doomed to endure -- and have been determined to figure out a fix for it; like I fix everything else.
From the beginning I have believed that through modifications to my behavior I can, to some degree at least, gain control over this situation. The surgery has changed the 'hardware' in my body as well as the control 'circuits' (nerves, etc.). Since I really can't do anything about this new configuration I have concentrated on the things I can do - or, at least, try to do.
- Be thankful for what I have.
- Control fluid intake - drink LOTS of water.
- Avoid alcohol.
- Purge completely before going to bed (ie. be patient).
- Get up.
- Don't sleep too soundly.
As far as controlling flow; it was a little surprising to me how number two has worked out. (#2 from the above list - not 'number 2' - yeah, that's a funny sentence.) I can't emphasize enough the importance of drinking LOTS of water during the day. Remember the Neo-bladder is made from intestinal tissue which makes this stuff called mucus (yuck, I know). If this isn't flushed out by lots of fluid it tends to muck up the drainage tubing (that was not designed to handle this stuff) which, in turn, makes purging more difficult. I do pay close attention to when I stop drinking before bed time, however, and try to time things so there will be enough time for what I drink to work it's way through my system in time to be purged before I go to sleep.
Get up in the morning - usually quite early. The transition from asleep to awake takes a while (for me). And the body seems to roust itself in the morning before the mind becomes fully awake. Or perhaps it's just that the body doesn't need as much rest as the conscious mind. Whatever it is, when I begin to wake up I'd better get up right away so I can control things. The body doesn't have a 'snooze button' and the fluid starts to flow.
You may notice an underlying theme in my approach to this problem. I have come to believe there are two main things that keep me dry at night. My body's ability to control the flow while I'm sleeping, and the amount of pressure (content of the bladder). The first involves building muscle tone around the area where the urethra passes through the groin. I can feel that these (kegel) muscles are firm while I'm awake and I also sense that they relax during the night (perhaps more and more as the night goes on). I have made an amateurish attempt at self hypnosis sort of thing by trying to hold them tight as I go to sleep. I don't know if it has done any good. I don't feel like I have as much control over this so I am focusing on the second problem which is controlling the contents of the bladder when I go to sleep.
The most direct way to control the contents is by purging completely before going to bed. This takes some time so patience is required. Since the bladder walls have no muscles of their own (please see my blog entry "The Wave") you have to use other muscles to push out the fluid. This is like getting the last of the air out of a sleeping bag, if you push on one place some of the air goes out but a lot of it just moves to another place in sleeping bag. During the day it's okay to get most of the 'air' removed, but before bed it's important to get it all. By now I have learned what muscles (both internal and external) work best at applying this pressure. Peeing requires alternating between applying pressure and relaxing (to let gravity do it's work?). Complete purging requires repeating this cycle until nothing more comes out. This may take a while and involve quite a bit of work - and patience.
You may be thinking of a third thing that's obviously involved here: The ability to feel this pressure before it overwhelms the control mechanism - consciously or subconsciously. This feeling is very subtle and even during the day I have to pay close attention in order to recognize it. So I don't hold out much hope of it being strong enough to wake me. When I do wake up during the night (same as before the surgery) and I try to go to the bathroom - thinking it might have been this sensation that woke me - there usually isn't much to report. Certainly not enough, I think, to have caused any sensation strong enough to wake me.
Finally, there's the thing about sleeping soundly. You know when you wake up out of a deep sleep and feel totally rested? I used to feel wet as well. But that has become very rare - I can't remember the last time - and I'll take that. Actually this is no longer an issue - thank goodness.
The bottom line is that I've been pretty lucky so far -- and now things are getting even better. I don't know if it's due to the steps that I am taking or if it's just a part of my body's natural 'healing' process. Most likely it's some of both. Either way it feels good and it gives me even more reason to be thankful.
If you're going through this, I hope it gives you hope.