Men Who Conquered Incontinence: Need Some Advice Please

Is this normal? I had my RP surgery 20 days ago and was told “the reconstruction went exceedingly well”. Since he has done over 4000 operations I believe him. I had the cath removed 14 days ago. I did my kegels for weeks before surgery and started doing them immediately after the cath was removed.

Here is where I’m at and I was wondering if guys who have improved can tell me if they went through this stage:

• I can NOT urinate on command, meaning if I stand at the urinal or sit down on the toilet no liquid stream can be produced.

• However, if I am sleeping I wake about every hour, feeling my bladder is full, pinch tight my kegel muscle, make it to the toilet standing, and can have a stream for about 4 seconds. I have experimented and have enough control that I can stop the stream by doing a kegel hold. It's not easy sleeping only an hour at a time for 14 days...

• If I am standing naked I drip like a slow leak faucet, about a drop every few seconds.

So I have been going through a lot of pads and depends, since I leak continually. I don’t mind that, I’m just worried I am not improving. I was told by the nurse to drink 8 glasses of water a day but I have been drinking as little water as possible. I think much of the urine must be coming from the fruits? I do not drink coffee or alcohol as of now. When I have asked questions of the PA and nurse they say I am “normal”.

Thanks for your advice.

Nick

just curious what are you drinking if your not drinking water? I drank at least 4 16 oz bottles of water a day and did lots of walking. Drink more water and give it time it will come around.

Larry

...I was told not to drink anything before leaving the hospital the day the catheter was removed, but then to drink as much as I could tolerate to flush any debris (clots and blood particles that never clotted, per se). There was not a lot of that, but I did notice that after a few days of pretty furious peeing from all the water that the urine cleared completely. I agree that you are early on here, but I would still consult with the doctor. He'll know best. It could be that it is a blockage of some kind. That's usually easier for the uro to clear up earlier rather than later.

OP HERE: Thanks guys. I don't know where the urine is coming from except I eat a LOT of citrus, watermelon, cantaloupe, salad. I'm 100% plant based diet the last month (lost 11 lbs!). If I drank what I am suppose to drink, I'd be changing Depends every 30 minutes! The pads wouldn't hold it. When I posted this thread on the forum I also sent the same to my surgeon's PA and she wrote:

These are all normal occurences after surgery.
During the day, from standing frequently, you are leaking what little urine is in your bladder so your bladder never truly fills to the point of fullness to produce a stream. At night because you are laying flat and not leaking as much, urine builds up and you are able to have enough urine to provide pressure to produce a stream. Sensation and stream changes post operatively are normal side effects and take a month or so to even out. Keep at it! You are recovering nicely!

So....maybe I shouldn't worry...Thanks All!

Nick, although some lucky guys recover continence very quickly, 20 days is nothing, no time for healing at all. It took me months to get even to what I considered a reasonable condition, and though by a year I was mostly OK, I was still improving slowly and very slightly for way over a year out. I am far from what I call perfect even now(3+ years), but I rarely bother even with the smallest pads and have not for about 2 years. And for well over a year or maybe 2, when I do bother just for confidence, the truth is I have not really needed them, never really wet. But it took me a long time. It does not take most folks that long.

I would however want to talk to my doc about not being able to get a good stream going. That sounds the exact opposite of my experience, as I could piss like a race horse from the moment the catheter came out, I was shocked at the fire hose stream such as I had not seen in 20 or 30 years. But I can see that some swelling or some temporarily lodged debris could clog things up. Call that doctor up and ask him what's up with that.

Nick,

The rule of thumb for continence after RP is all about thirds.

A strong majority of men who have prostate cancer leak like you describe when the catheter comes out. Of those leaky men two thirds will be dry at three months after surgery, assuming they follow instructions about doing their kegel exercises. We have quite a few guys who mention six weeks as when the magic starts to happen and they gradually regain control.

But that's not everybody. That other third -- the guys who still leak after three months -- should talk to their doctors about some form of physical therapy / biofeedback training. Sometimes men are doing too few kegels, or too many, or not doing them right. The physical therapist or biofeedback tech can get them sorted out and two thirds of those guys will be dry at one year.

That leaves that one guy in nine who still leaks after a year and PT/BioF didn't help enough. Those guys should talk to their surgeons about some further reconstructive tweaking -- a sling or an artificial sphincter. Slings and sphincters work two thirds of the time.

This leaves one guy in 27 (one third or one third of one third of the original leakers) who will leak long term.

So, for now, just keep doing those kegels -- not too few, not too many -- and be patient. It takes a while. If you are still wet at three months you can talk to your doctor about physical therapy.