Just thought I'd update my condition. As background I had an open RRP on 7/25. I had a catheter for 3 weeks. Within 24 hours after removal, I was 'closed up' and couldn't urinate on my own. After 2 weeks of self-catheterizing 4-5 times per day with no improvement, my Uro recommended a new Foley catheter for a while as things hadn't healed from what he saw in a cystoscope. I had the 2nd Foley for about 2.5 weeks and got it out last Friday (9/16). He recommended self-cath once a day whether I needed it or not to help keep things open.

Trying to urinate caused a LOT of discomfort at first as I tried to relax and open the sphincter. It was open for a trickling flow the first few days, but I had to self-cath twice on Sunday and again on Monday. Now it's Wednesday 9/21 and things are consistently trickling again and the discomfort is diminishing. I'm about to go to bed and will self-cath to see how my bladder is or isn't emptying. I drank a lot of liquid today and had to urinate about 5 times from noon to 5 at work. I have very minimal leaking - I can feel just a drop or 2 escape every once in a while but I know it is leaking because I'm taking Pyridium for the pain during urination and it colors my urine orange, which I can see in the Guard for Men I'm wearing.

I'm describing this since I seem to be kind of alone with this set of symptoms. Most guys have the opposite problem. My Uro wants to avoid any effort at 'widening' or 'opening me up' if at all possible since it could cause permanent leaking/incontinence of some degree if it doesn't work just right. Any ideas/comment are of course welcome.....

Hi James. I was wondering how you are doing. When my husband was going through the same things as yourself, we thought we were the only ones with the problem. Our well-experienced, highly respected urologist had never seen this before. Since we have heard of another case besides yours, but that seems to be only 3 in North America, so I guess the shutdown in plumbing is still relatively rare. Anyway, my husband still self-catheterizes about once a week just to keep things open, as your urologist suggested, and if he leaves it too long it is much more difficult. (He's been doing this for about 5 months.) His urologist too was reluctant to do the widening for the same reasons as yours. He is scheduled for another scope in October to check things out. His leakage is minimal, but he still uses a pad, although doesn't need the men's super size any more. He too was on Pyridium at first when he was shutting down immediately after the first catheter removal. What a pain that was! Dyed everything in sight! Especially when he was leaking all over the place--we were sure glad when that was done with. We can sure empathize with you! We appreciate the updates.

Hi James, Sorry to hear you are having problems. When my husband came home from the hospital in March 2005 he had a drainage tube, well let me tell you that thing was putting out like it broke a dam in there. The nurses rigged a thing almost like a foley bag because the output was so great. For two weeks it just kept going then finally it started to slow down to below 50 cc in 12 hours. I think it even scard the doctor anyway because of the set back with that my husband asked to leave the cath in for another two or three weeks just to be on the safe side and he had no discomfort with it anyway. He had the cath in for alost five weeks when it was removed just a small amount of leakage and now he has none. He did do the kegle exercises everyday for months before surgery and even at the hospital after he swears that is what helped him get back his control. He just had his checked up his psa was 0.1 and he is doing great except he was cleaning behind the garage and he has poison ivy all over his arms and legs nasty :eek: I hope everything works out for you james Take care and stay safe geifer :cool:

Ladies, thanks for the replies, information and support.

I self-cath'd last night and there was a lot of urine, so I'm not voiding the bladder on my own. Today the flow was diminished from yesterday's trickle to a stead dripdripdrip during the morning. This afternoon the trickle returned. I didn't self-cath since I forgot to take the cath & lube to work with me. I had this fear of closing up completely and being in a bit of pain and trouble but it never happened - I urinated probably 8 times during the day even thought I didn't drink that much.

Another interesting thing is when I stop dripping when trying to urinate I can still get 'spurts' of urine by tensing and releasing the Kegel muscle - it's like it's i the urethra but won't flow without the muscle 'pulses'. I've had strong Kegels pre-op but missed out on 5.5 weeks of working them post-op since I had the Foleys that long.

My first post-op PSA test results should be in tomorrow....so once that's past (and hopefully undetectable) I'll be more aggressive about my urinating situation.

james in wv:

thanks for the updates. I've been wondering how you've been doing! My thoughts and prayers are with you.

Seems like we either get too much urination (leakage) -- or not enough.

Some (the lucky ones) seem to be continent from the very start (after catheter removal) and others are like you, with scar tissue closing things off.

Guess I'm in the middle, still leaking when standing/walking/working around the house -- but pretty continent when horizontal (sleeping), sitting, or not moving around. Still doin about 3 pads a day -- but they're not nearly as soaked as they used to be.

Best wishes,

Ken in CA