Regaining continence post protastectomy

Colbo68 said...
Feel REALLY despondent this morning. I know I'm only just over a month following surgery (and two weeks following removal of the catheter) but I woke up at about 4.30 am and I've been having to pee into the toilet approx every 30 minutes thereafter. I'm tired. I'm sick of peeing myself. It is literally like I have no bladder. It's like there is nothing to store the urine anymore...just a constant flow of pee. My sacral area hurts due to doing Kegals, but if I wasn't holding myself, almost constantly, I'd be getting through pad after pad after pad.
I'm really thankful for all the positive comments on here but, at the moment, I'm struggling to come to terms with being incontinent.
I'll advise again...for anyone who hates the feeling of leaking into a pad, try the Hollister penile pouch. It looks like a colostomy bag and fits over the whole penis, testicle area. There's a small bag attached to empty when the leaks start to fill it up. I find that if I can get it to seal well at the start of the day, it'll stay in place for the day. It's been like a Godsend for me, particularly as my penis has retracted since the operation.
I am living for the day that I start to 'dry up', cos this is horrible.

Colbo, it is horrible. It could, and sometime does, bring a grown man to tears. But don't give up hope yet. There are so many variables that it is hard to know, until a year or 2 have passed, if you are going to be in the good enough group in 1 week, 1 month, or 1 year. Did you have a large prostate by any chance? At my 6 week checkup, as I let my distress be known to my surgeon about my still quite bothersome level of incontinence- considering he told me he had a 3% rate of incont. and expected no problems from me- he informed me that guys like me (large prostates) tended to take much longer, but in the end had just as high a rate of continence as the smaller prostate guys.

My local urologist- the one who referred me to a guy a 4 hour drive away who had done thousands of RRPs for a 2nd opinion- gave me another tip: sometimes time, and nothing else, is the key. When they sew your urethra(the pee tube) back together, it naturally enough forms a scar, and it has the sutures within the scar. Now, you know how a scar on your skin can take a long time before it heals up to a much less noticeable and sometimes almost invisible condition? Same with this. But here is the catch: they try real hard to position that suture line so that when you stand up and everything slides down hill, the scar does not end up positioned inside the sphincter. But sometimes it does. If it does, it is probable that no amount of Kegels will make your sphincter strong enough to squeeze that scar tissue closed, especially when you are not actively squeezing. And as you have said, you can only squeeze for so long before the muscle becomes exhausted. The only solution is for full healing to take place, for that scar and the swelling to completely recede, and for any sutures to disintegrate and be absorbed. This might take awhile, a lot longer than 1 month. If yu are in that category, that is no fun, but at least there is hope on the horizon. A light at the end of the tunnel that is not a train.

Also, keep in mind that you are retraining this one remaining sphincter to carry the total function, as it does with a woman, and that can take time. It is not used to carrying the entire load:
www.bladder-control.co.uk/anatomy/muscles/index.htm

Somebody said...

The urethral sphincters are also important for continence and control. In fact, for men, there are two. One is located in the bladder neck and is called the internal sphincter. It's a smooth muscle, which means there's no conscious control over it. You can't voluntarily squeeze it, that happens automatically.

Then there is the external sphincter, which both men and women have. It's a different type of muscle to the internal sphincter and we can voluntarily control it.

Also, your normal external sphincter strength was temporarily weakened by having a catheter in for days or weeks. It is held open by the catheter, is not being contracted, and suffers at least some atrophy, the degree probably varying. So just as my leg was all shrunk up after I took it out of a cast, so might a sphincter be. But with exercise my leg fully recovered, and so can a sphincter, maybe even becoming stronger than before when you never exercised it.

Lastly, as a final insult, your bladder can sometimes become quite lazy and shrink up(atrophy) when it is continually drained by a catheter for a week or more, plus it does not have the "Hoover dam" of a prostate to push against anymore, and it is totally irritated from the catheter. Often, the bladder just does not know how to act anymore, and it may stay in almost continuous contraction. If your bladder is now small(temporarily) and frequently contracting, that can be quite a lot to expect that newly lonesome external sphincter to deal with, especially if you have a new scar sitting in the sphincter mucking things up.

Bottom line, sorry to tell you: time! Somewhere between a week and a year. I personally took 6 months( I know, sorry to tell you but you might do much better!) before a big improvement, and I did the biofeedback/electro stimulation thingy. I was still improving very slowly but steadily at 1 year by which time I only wore the small shields on occasion for security. I swear I was still seeing very small but noticeable improvements at 18 months out.

Now I am soon going to start a new thread about meds I am trying for my only remaining problem, my MAIN problem from 1 year onward: I only occasionally wear a shield and it is almost always dry when I remove it at night, and have been at that point from 1 year onward. But 1 to 10 times a day, I will get a sudden contraction- I suppose a bladder spasm - that causes me to need a very rapid response Kegel as hard as I can squeeze, or I am going to have a wet spot. Usually I can stop that completely, or at worse I get a drop or two that does not show.(this has nothin to do with how full my bladder is, it could be almost empty) I am finally experimenting with some meds, to see which will work best with the least side effects. First one I have tried has stopped the problem 90+%, but with a bit of dry mouth, though not as much after a few days of use. Today I hiked 4 miles with a pack, up and down steep hills, huffing and puffing, didn't leak a drop or have a significant spasm, no drops escaped, and as usual, no kegeling. No conscious squeezing. I have not needed to do that for 2 years, unless I was having one of my sudden "contractions", and now even that may be gone with the 1st pill(Vesicare). WhooHoo!

So hang in there Brother, and God bless, don't give up hope! Your odds are good of recovery! Oh, in case you have not guessed it already, PCa and it's treatments suck! Most of us agree on that!

Bill in MS

Colbo, one of the things that many of us have noticed is that the time lag between "soon" and "right F-ing NOW" is a lot shorter than it used to be. Which makes long car and plane rides a challenge.

Thanks so much for all the advice chaps. Being able to read others experiences, opinions etc has massively helped.
God bless you all

This too will pass. I used one pad a day for 13 weeks then stopped. After two bouts of radiation I need to be careful that I don't pee when passing gas. It just takes practice but you learn to deal with a wet crotch now and then. Biggest problem I have is total ED which I don't know I'll ever recover from. Of course having incurable high risk PCa is the real problem makes everything else pale by comparison.
Have patience and hope!
Bob

BillyBob@388 said...
RobLee, WOW! What is the reason you can not go ahead and either have the RT, before the AUS? (forgive my ignorance) I understand that the RT may halt progress on the road to continence. But sounds like you are already a go for the AUS anyway, so? Or is it something else that must be considered?

The reason is twofold, from what I understand... Apparently RT requires a full bladder. My RO said I need to arrive with a full bladder and an empty bowel, every day, for forty days. I've read many other guy's experiences at this... some say they have to drink a bottle of water when they arrive and wait their turn. If they "lose it" they go to the end of the line and start over. Some even tell of fluid filled rectal balloons... I'll have to ask my RO about that.

If it was necessary (say, by prematurely escalating PSA) I probably could manage it by using a penile clamp. I do use these sometimes getting out of the shower when I'm toweling off and before applying the condom cath. But I would not want to wear one for several hours every day. There are tales of penile erosion from overuse of clamps. Ugh!

Also, the prosthetic urologist doing the surgery told me they prefer to implant the AUS before radiation tears up the tissues inside, probably for the same reasons that salvage RP surgery is impractical for those who chose RT as their primary treatment for PCa. I read somewhere (maybe here) of a guy who had problems with his implant because he'd had RT beforehand, perhaps years earlier (if I recall correctly).

Thanks for asking!

I'm a numbers guy.
The number I've been carrying in my head are Post RP 2/3 of men are continent at 3 months. Of the 1/3 still incontinent 2/3 of them are continent at one year. Of the remaining 1/9, 11%, half will have surgical intervention to fix incontinence, 5.5%.
So that means out of 1,000,000 surgery guys ~55,000 will have a sling, AUS or some other surgery. The numbers seem to make sense with RobLee's.
I'm going to resave them back in my long term memory bank.
Jeff (One of the 5%)