Incontinence for noobs

No, one kegel is not enough. You do a series of kegels. Jim posted some exercises that included kegels and some other exercises for post neobladder surgery. I will try to find those and post the link to them.

No, I do not wear an exterior bag. I have a neobladder. At night, I wear a condom catheter attached to a bag because I did not get night time continence. I also have to self cath every time I go because I am hypercontinent during the day. I can empty a little on my own but not nearly enough and my neobladder is now around 1000cc. Complications, but I'm used to it and it doesn't really bother me. Easy enough to do and beats having to have diapers and such (in my opinion).

Did they remove your sphincter? As far as I know, that part of your anatomy is kept when they sew your neobladder back to the original plumbing. The part that is gone is the bladder muscle. Since you don't have a bladder muscle and intestine is not muscle, you can no longer squeeze the muscle to expel urine. You now will be using pelvic floor muscles to put pressure on the segment of intestine that is now a bladder.

The sphincter that is gone is the prostatic sphincter. That is where the bladder is wrapped around the urethra. With that gone, doing catheters or getting cystoscopies becomes much easier for those of us who had enlarged prostates or just tight prostatic sphincters.

Not sure what you mean by you lost your involuntary sphincter and still have your voluntary. If you give me the medical names of these I can look them up.

Mike

Thanks, Mike. I have two weeks until my short term disability runs out, so that's my goal. I read your signature block, but don't understand your set up. Do you wear an exterior bag? You seem to have experience with all the options, which unfortunately sounds due to everything going wrong.

BTW, from what you have seen, is doing one kegal per hour enough? It sounds like that would not be enough to give the muscle a good workout (drop and give me 20!).

What I was getting at about the sphincter is how is the urine staying in? I have this funny mental picture of walking around clenched all the time.

It's going to take some time. I know it can be frustrating early on and I think that was the case for everybody. Keep doing the kegels according to your schedule and control will come.

It isn't like you are going to have 'concentrate' on a spincter to regain continence. It just kind of gets a little better over time. It seems like a long time on the one hour schedule but doctors are different and I personally don't know of any reason why that wouldn't work out just fine. I thought mine was some something like one hour for a week, then two for a couple of weeks, then three.

Ask your uro but I don't think it is a matter of mucous. The mucous easily passes. Right now, you don't have the pelvic floor strength and you're just learning to urinate with the neo. That's more the reason for not much coming out yet (IMHO).

While the whole idea of self cathing sounds horrible right now, it's not really a big deal. Since they remove the prostate, it is easy to self cath if needed. I think it is way to soon to be concerned with that anyway right now.

Control will come with time and the kegels and patience. Patience is the hard part right now because you want to get to your "new normal" as soon as possible. Typically takes 4-8 weeks after getting the catheter out though.

Mike

So, here I am at 4 weeks post surgery. They did a contrast that showed no leaks in my new bladder--thank God. My doc took out the Foley (he lied and pulled it while I wasn't looking). I have absolutely no control, unless you count focusing all my strength on not going. The first night was a disaster--I fell asleep on the couch with only a pad; you can guess what I woke up to. The super pubic tube comes out in two weeks (sounds painful), and he has me wearing a bag at night for this week to give me a break. I'm on a once an hour schedule of Kegals and bathroom trips for month one, although the bladder didn't get the memo, since about all I'm getting is a trickle, but the pads are having a party.

I'm also irrigating thru the SP for the next two weeks, which is a good thing since I'm not urinating much mucus--that SCARES me. If I can't expel it normally, I will have to self cath, and that isn't going to happen.

I'm curious about control--since there is no involuntary sphincter anymore, do you hold the voluntary sphincter all the time?

Ah Yes! The nightime friend of every urology patient everywhere! For 2 years I have made a study of absorbent material. "They all leak!" I have also made a study of sleeping positions: on my stomach or on my back- this puts pressure on my bladder and kidneys and Whoops..... Leakage!
Sleep on my side and ... Leakage out the side of the pad or diaper. My wife and I have turned this into a sort of "bad theatre" or "bad Cinema" Thank God she has a sense of humor about this. She says "As soon as I don't need the pads, You start needing them!"

I guess we need to realize that having your life saved has some drawbacks. Even 2 years out, I still get an occasional surprise when I wake up! But I try to limit my liquid intake after 6pm and get up at least once in the night. Not a bad payoff.

Look at us.... mature (physically, not mentally) people talking about the differing attributes of liquid absorbing diapers! It just makes me chuckle to myself.


On another note of comedy... I will be at Watkins Glen this weekend for 4 days of Walter Mitty (old guys who think they could be race drivers) formula racing. We wear a one piece, flame retardant racing suit........Hmmmmm. What happens when you have to go .... at 150 mph?

The things that make you go .... Hmmmmmmmmmmmm!

George