HealingWell
Search Close Search
☰

Road to Being DRY

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/22/2009 9:14 PM (GMT 0)
I have a couple questions for those of you who went down the road of incontinence and recovered to an acceptable degree.  As my history indicates, I had a RRP on 11 November last year.  I only had to deal with a foley for 8 days.  When it was removed, I had no control whatsoever.  Well, the day before yesterday was 10 weeks.  For the last couple days, the pad that I go to bed with is not ready to change until the following afternoon; normally.  However, today, I am ready to change again and this indicates that I will go through 3 maybe 4 pads today.  Is this normal; for the number of pads to vary from day to day; somedays 2 while somedays more than 2?  I sure hope so, because sometimes I get really frustrated with things cause I feel I am not making any progress to being dry or even almost dry.  Also, even though my surgery was nerve sparring, I have no activity unless I take a Cialis and then activity is very minimal.  Is this also a normal part of recovery and does this ED also improve with time?  If I had my druthers, I think I would pick being dry over not having ED.  I can live with the ED thing but I hate to think about being a 2 padder or more padder forever.

Thanks for all you input.

masterguns

Posted 1/22/2009 9:40 PM (GMT 0)
masterguns, like everything else we're all different and our kidney process at different speed. Fluid intake each day can vary and that varies the output. So there's a couple or more of different reasons why you can have problems intermittently. You're 9 weeks post surgery, so a little early in the process for continence as far as the average man's progress to being dry. some are earlier, some later, some never. Seems like when guys are beginning to get really dry, they have up and downs episodes of using more or less pads for a while. Hopefully this is what is happening.

Concerning your ed, if you are getting even minimal reaction to Cialis this early, then it seems like you are starting on your path for ed recovery. How much you regain and when is, again, an individual thing, but things you describe sounds hopeful. At around the 3 months mark, I would suggest discussing further ed actions to take with your doctor. Most guys doing ed rehab will start with a VED (penis pump) at about that point. Injections are also something to discuss, but it is a little early, better kept until the pills and pump has a chance to help. Hope this is helpful for you. In summary, sounds like you are just the average Joe, as far as recovery, neither ahead or behind the curve.

tongue
Posted 1/22/2009 10:41 PM (GMT 0)
Masterguns,  My experience was very similar to yours as far as incontenence is concerned.  My last 2 weeks of leakage saw very rapid improvement.  Hope you do as well as I did on incontenence and better than me on the ED issue.  Sounds like you will.  All the best.  Allan
Posted 1/22/2009 11:47 PM (GMT 0)

My situation at 10 weeks was 3-4 pads.  I got near dry at 12-14 weeks.  Today, 8 months later I still wear one pad daily to catch minimal residual.  I would advocate patience as it may take longer than you think - it did with me.  Regardless, it sounds like you are moving in the direction of dry - making reasonable progress.

As far as ED - count your blessings - this too is a very slow process for many of us.

Posted 1/23/2009 12:03 AM (GMT 0)

I had surgery 10-1-08, nerve sparing. I was going though at least 4 pads per day untill about a week ago. I was also using the ultra absorebent type. I would put pad inside of pull up for added protection. Now I only use pad at night in regular brief and am dry in morning. I am at about 18 weeks. I was right where you are asking the same questions at 10 weeks. I also am dead in the water down below. Now I go though 2-3 pads a day instead of 4-5 at 10-11 week mark. I have a active job plus I work  out which adds to leakage. I did have a biofeedback treatment with electrical stimulation on Jan 5th. Saw some improvement after that. Having one more treatment next week.

I think you are probably right on schedule compared to the average of most of us. I agree it is very hard to deal with 24/7 everyday. It is a curse we have to bear tempoararily.

I do kegels 4 times a day also. Good luck and as always Carry On.

Posted 1/23/2009 1:35 AM (GMT 0)
    Hey Guns....  Keep at it!!!!  Your only a couple of months out.  Sounds like you will dry up eventually.  I know how you feel.

    Good Luck, 

    KW

Posted 1/23/2009 2:34 AM (GMT 0)

Gentlemen, I sincerely appreciate the replies.  Your responses are reassuring.  I can only pray, and believe me I do, for eventual dryness.  I will continue to march as all you state and try not to get frustrated.  I just purchased a new Harley Davidson in celebration of my first PSA of "non-detectable" and I would just love to take it for a really long ride.  I am just afraid that most of my luggage space would be taken up by these darn pads.  Maybe I should get a trailer for it.

OHHHRAHHH 

Semper Fi

MasterGuns

Posted 1/23/2009 11:39 AM (GMT 0)
I had surgery on 9-22-08, and only in the last few weeks have I started to show significant improvement. I'm down to 2 pads a day,one during the day and one at night, the night pad is just for occasional leaks as it is usually dry in the morning. Even the day pad has only a small amount,cause by my work activities, so it appears we all heal at vastly different rates. After reading some of the stories of guys here that have almost no control after a year, I feel very lucky to be where I am now. You also have a head start on me in the ED department, as even with a 20mg, I get no reaction at all. Keep your chin up, have patience and you'll probably do just fine.

Cheers

Ralph
Posted 1/23/2009 1:42 PM (GMT 0)
Guns, that new Harley has to be a pretty big incentive on your recovery path. What better way then to bury all this PC stuff to the back of your mind crusing down the highway on a great bike. I got talked into selling my beloved Triumph a year ago, regretted it ever since.
Posted 1/23/2009 2:58 PM (GMT 0)
MasterGuns,

That's a cool reward for your first nondetectable PSA! I'll have to talk to my wife about how we can celebrate...

DJ
Posted 1/23/2009 4:04 PM (GMT 0)
MG:

I'm approaching 38 weeks post op. I'm leaking 10 grams or less a day (about 1/3 of an ounce), I use one pad per day. I was a heavy leaker for months. I figured at one point I had used close to 700 pads. And yes, days will vary for no apparent reason. You should hit some serious improvement somewhere around the 3 month mark. If you do that, it sounds like in your case you'll probably go dry. I greatly improved, (from 7 pads a day to 2 or 3 pretty quickly) but still have not made it all the way.

For me, heavy exercise causes me to leak, but then I think it helps me stay drier during the normal working day.

As for ED, just keep at it. My doctor keeps reminding me that this is a YEAR LONG recovery process, and improvement in the ED area can be made up to 2 years after surgery.

Carry on,
kcragman
Posted 1/23/2009 4:20 PM (GMT 0)

master guns, dont give it too much energy ,i have been there just as we all have ,you are doing well ,you have to remember it takes some people more time than others,for those of you who are starting to wind down and have less leakage ,or at night when its minimal,try the womens pantiliners ,it worked well for me ,ALOT more comfortable ,CONGRATS on your post op toy, there is nothing that brings freedom to the soul like a harley and the ride it provides ,it was almost 3 moths before i could get back on mine ,(100th anniversary road king classic) and it was VERY theraputic,in a way it made me feel almost normal again.your gonna be dry soon ,count on it.dont  know where your located ,but there is some awsome country out there to see ,go for a ride  when you can my brother . as you well know its a experience you can never get in a car, not even a convertable

                                                                                                              DIRT

Posted 1/23/2009 5:21 PM (GMT 0)
The number of pads I use per day varies, also. I'm convinced that type and frequency of certain physicial activities, weather conditions, and dietary habits are contributing factors. For the first two months following surgery I think I was using as many as 10 pads daily - several days there were more than that. There was a lot of leakage - however, not overnight, just during the daytime. At about the 3-month mark there was a substantial reduction in the leakage, and now, approaching 5 months, I'm down to 2 pads daily. But, there have been days, very few, where I'll need 4 pads. I suppose I could have gotten by with fewer pads at times in the beginning, but I don't like the sensation/feeling of being wet - so I changed frequently because the pads are relatively inexpensive. My Urologist cautioned me not to be too concerned about early leakage, because, he said, most of his patients don't see much improvement until the 3 to 6 month post op. time period.
Posted 1/23/2009 8:31 PM (GMT 0)
Like I said before, I truly, from the bottom of my heart, appreciate all the enthusiatic and motivating replies.  After reading the first batch last night I was so sure of full eventual dryness and to celebrate, I headed to my garage and got the scoot ready to bring to work today, a 60 mile ride one way.  Threw a half dozen pads into the r/h saddle bag (what a deal that is), sat my skid lid on the seat, found my cool weather gloves and it was ready to fire up at 5 am and head on in.  Ride was beautiful and my pad was dry (at least at the time). Why can't I type one sentence without mentioning stupid pads?  Anyway, nice day for a bike ride here in N. Texas.  Heck it is 75 degrees here now and will most likely top out near 80.  I just love Texas.  I wish all of you the best of luck in this seemingly long road to recovery.  But everytime I start feeling frustrated, I read a few posts by Purgatory and I am remotivated.  This guy has had one hellofan ordeal to get through.  He has been in my prayers almost since the day I joined this forum.  Too bad he got rid of his Triumph; good bike as well.  Thank all y'all so much and I'll keep y'all posted as to my "continued" road to full dryness.  But I will repeat at this point in my life; come on dry and for the time being, the hell with ED.  I worry bout that later.  I bet these pads would come in real handy cleaning up oil spills.  OMG, did it again.

Semper Fi

MasterGuns

Posted 1/23/2009 9:09 PM (GMT 0)
master, thanks for the comp, but just another one of the fellows here, my heart/emotions are on the outside of me, for good or bad. had the triumph sprint st, tornado red, factory side bags. was great here in the mtns in western sc/nc. even at my advanced age, still have a need for speed, like straight line rocket acceleration, the curvies, and high top speed, not so much into cruising. with my helmet on, the young riders wre clueless to my age, made me feel 20 years younger riding. speed record here was 145, but back end starting feeling weird so i backed off. not sure i will ever own another, want to, but other health issues. my wife wouldnt refuse me ,but strongly discourage me. i hope you continue to do well in your quest.

david
Posted 1/23/2009 9:27 PM (GMT 0)
Glad to hear all the responses. I had an RRP in 2007 and was completely dry from day one. On December 17th I had to have a stricture removed from the bladder neck and have been 100% incontinent since. I am wearing three or four pads a day, putting up with a lot of wet before I change the pad. Sure didn't see that one coming. Sounds like I am going to be wearing pads for a while yet.

I have experimented with all kinds of pads, including the diaper type. The best one I have found, so far, is the Poise "Maximum". Does anyone have a favorite, if you can call it that ?
Posted 1/23/2009 9:40 PM (GMT 0)

Hey stxdave,  So where would one find these Poise pads?  I have been using the only kind I know of; Depends.  Please share why you think these are the best.

Wishing you well,

MasterGuns

Posted 1/23/2009 9:51 PM (GMT 0)

Purgatory,  Know what you mean about eye balls sucked back in the sockets, blistering acceleration.  I also have a 88 Venture Royale, 1300cc.  Although this bike is over 20 years old and was manufactured to compete against the Honda Aspencade, this bike even at 800 lbs is quick and I mean 12 second 1/4 mile quick.  I've had it up to well over 130 and she still wanted to go but I backed her off.  A guy almost 60 should be setting a good example but.....  I really look forward to ridin because like someone else stated here, keeps my mind off the more pressing issues like having to use pads.  What a curse!  I know having PC is worse but it never produced any symptoms.  But being incontinent, and temporarily I might add, is not a killer.  Adapt, improvise, overcome.

Hope you are still doing fine or even better than fine after your 5th go round.

MasterGuns

Posted 1/23/2009 10:58 PM (GMT 0)
hello masters, the quality of life issues are just as important sometimes in a long, protacted recovery process like we all go through, sometimes as much as certain medical specific things. we still have to live, to enjoy the things we do, i.e. your motorcycle riding. with dealing with PC, you almost have to be pragmatic about life. i quoted this earlier to someone else here, what my ex boss said all the time, "it is what it is". all the wishing and wanting won't change our situations. if we dont have patience, we have to learn it. i am speaking on a good day, not pretending differently, ive had my times pre pc dx, surgery, post surgery so far, where i was at rock bottom, beside myself, a real mess. but with the help of my wife, my children, a few close friends, i am motivated to make it. i dont want to feel like a vicitim through this process, and i have at times, i dont want to feel like what is the point of living if i have to deal with all these issues. my life and who i really am, is not going to be confined to whether or not i am learning to be continent, or whether i will over come ED. i read a story in the news today, about a beautiful 20 year old model in I believe brazil, to stop or slow down some medical problem, theyve had to amputed first her hands, and now her legs, and they are hoping to save her life still. so why do we all complain so much sometimes. not lecturing anyone here but myself. thanks for the rambling time.

david in sc
Posted 1/24/2009 12:17 AM (GMT 0)
If I remember right, someone posted that on his case- his total continence just came all of a sudden. From using I think 2-3 pads a day to complete dry. They said that total control will takes anywhere between one day to 365 days. Again, just like everybody says- every patient is different. I for one, my RRP was Dec 4 and I am in my 3rd week of just one pad a day. I am still afraid to take off at night though when I woke in the morning, it's dry. But just in case, I've a "dribble" in my sleep. As for ED, I am not even thinking about it yet. We'll discuss this with my DR on my next appointment in two months. I just pretend that I am on a 6-8 months deployment in a USS Carrier.. counting the day when I get home--- that's the excitement of being away from the loving wife.
Posted 1/24/2009 5:45 AM (GMT 0)
Mastergun,

The Poise "Maximum" pad I use seems to hold more fluid and it doesn't wick up like the Depends for men that I used. The Depends I tried were not marked as super absorbent so I don't know if I compared apples to apples.

You can stand in the sanitary pad section of Walmart, Walgreen's, or any super market and encounter hours of reading to be able to compare the advantages of one over another. I'm sure the women that shopped in Walmart thought I was a weirdo, but that's another story.

Now I had a bilateral orchiectomy at the same time I had the RRP so I do not have testicles to contend with and that could make a comfort difference.
Posted 1/24/2009 12:10 PM (GMT 0)
Hi Dave good to see you here at HW, I just jumped into this mix a little while back myself. We are still advocates for patients getting better choices, a fair shake, and comparative knowledge, and so that is why we are here for others.
You will probably like this forum better than the other two I have seen you at, it is open for discussion and moderated if it gets way out of line.

(dancing in the rain, or enjoy the sunshine when it is shown upon you...all good)
Posted 1/24/2009 2:59 PM (GMT 0)
Hey masterguns, I too am a retired Mgysgt and have just started down this road. I found out the 31st of Dec that I had PC and will start radiation sometime in Feb. Take care and best of luck with everthing

Posted 1/24/2009 9:07 PM (GMT 0)
Just read that the model from Brazil, who'd had her hands and feet amputated, has died. Tragic.
Posted 1/24/2009 9:15 PM (GMT 0)
Just saw that too, she had it rough, but they had her in a medical induced coma, so hopefully she was never conscious through it.
✚ New Topic ✚ Reply
12