Incontinence is making me crazy-2 months post-surgery

donft

You are so entitled to be down, discouraged and angry. All of us feel that way from time to time. This hideous cancer sucks. It changes us, no matter how hard we try to not let it. We have moments of despair, depression, frustration and all other emotions combined.

I have come to realize anger is such a waste of energy and time. It accomplishes nothing. My internist blew it. He should have sent me up two or threes earlier to be biopsied. I am justified, like you to be angry and I was. One day, I realized, I needed to let it go, and everything else that was bothering me. I needed the energy to heal and quite wasting it on being angry.

Go on a hike where no one can hear you. Scream as loud as you can. Be mad at God and let him know how upset you are and how unfair this is. Then walk back to your car and I promise you will feel better. Take your wife to dinner tonight, buy her flowers and tell her how much you love her and that you promise to move on with life. Who ever screwed you at work, that is his/her/their shortcomings and they will be paid back for their bad Karma. It may take time, but I have found out if I wait long enough, those that harmed me somehow get their payback that life naturally brings to them. So let that go as well.

I know this is easy to say and hard to do. It took me over a year to let my anger go with my internist. He has changed his practice to send patients for biopsies based on rate of velocity and not waiting until one's PSA hits 4 or above. He shared that with all the internists in our big health care provider out West, so good already has come with other men being diagnosed earlier. Like many of us at HW, we are willing to participate in Trial Studies so those who are researching and dedicating their lives to finding better ways to detect and treat can benefit those who follow us.

Another lesson I have continued to learn over my life, is when I turn my focus outward, in serving my neighbors, friends and even those I don't know in lightening their load of worries, I forget about my struggles and challenges for a small period of time.

One final lesson learned, is that while everyone that got diagnosed in January, 2011 with Gleason 9 have all passed, I realize everyday is literally a bonus day for me. And I treasure it.

Hang in there, you will climb out of your funk. Keep reaching out to us on HW and we will help you get there. Find a way to let everything that is bothering you to detach and roll down the river and look forward to the future with optimism. Good luck my friend. I am here to help as much as I can.

Hope you can have an amazing weekend. I will try as well.

- do keep in mind your body has been through a lot and it takes times for bits to talk to each other again.
- it wasn't until week 16 post-op that I was able to finally start controlling my bladder - getting out of the car was a mess until then - went from 5-6 pads (and clothing changes) a day down to 1 pad a day.
- exercise - kegel - walk - try to keep your spirits up - do penile rehab when the mood hits - work out your "new normal" - it will get better.

Bronson

I guess I can look at the positive side of my health. I was part of the cluster headaches.com community for years. Cluster headaches are called the "suicide headache" for a reason. Had them since 1985, but have been in remission for 3 1/2 years, my longest stretch by far. Just didn't know I'd be trading them for PC.

Purgatory is wrong in one respect. Before surgery a man's priorities are 1) cancer, 2) ED, 3) incontinence. The order purg gave is the doctor's priorities: 1) cancer, 2) incontinence, 3) ED. Most guys, myself very much included, worry a lot more about possible ED from surgery than they do about incontinence. It is only after surgery that they realize that continence trumps erectile function. If it leaks constantly, who is going to care what else it might be able to do?

PeterDisAbelard said...
Purgatory is wrong in one respect. Before surgery a man's priorities are 1) cancer, 2) ED, 3) incontinence. The order purg gave is the doctor's priorities: 1) cancer, 2) incontinence, 3) ED. Most guys, myself very much included, worry a lot more about possible ED from surgery than they do about incontinence. It is only after surgery that they realize that continence trumps erectile function. If it leaks constantly, who is going to care what else it might be able to do?

Two thumbs up. LOL!

Surgery guy here and I also have to agree with David. I hated the three weeks I dealt with incontinence. I feel extremely fortunate in that I only did deal with it for a short time. ED is certainly no picnic, but you aren't reminded of that every few hours and the whole world isn't aware of it like they are if you're sitting in your own puddle. The good news is that the vast majority of men do regain their urinary control. Truth be known though---I haven't passed gas with confidence since my surgery

I am eating lunch. When I get up to get my class, I will feel a warm wetness from standing. No amount of squeezing prevents this. It makes me feel about 6 months old. So, I'll leave them in the room, go to the bathroom, and put in my sixth or seventh pad of the day. Seriously, I'd rather have my penis doing its bladder-emptying job each day than sex from time to time. I can find a way around the latter, but not the former.

Hey donft,

Incontinence. There's something I know a little a bit about. Sadly, I was in the same boat as you.
I, too, dribbled every time I stood up, turned, sneezed, bent, ... you know... the things you do about 500 times per day. Oh how well I remember the feeling of warm pee on my bits.

One of my heroes here, Goodlife, told me about a device called a Cunningham clamp. Yep, it does just what you'd think... it chokes the chicken, so to speak. You clamp it on and in a couple of hours, when you are in front of a urinal you unclip it and "Whoosh!!" you're pushing the piss ice up the wall!
Unfortunately where I live, I needed a prescription for such a dangerous, subversive piece of hardware. Clearly I might hurt myself. The state will allow me to buy a handgun and 3000 fps armor piecing ammo for a rifle but it will not let me buy a piece of plastic that clips in my leaky winky. Go figure.
Some kind individual here bought one for me and accidentally left it at my house after a visit. It enabled me to stand in front of an audience and make presentations without fear.

I learned to wear pee pads and swap them out very quickly. You will learn too. Here's a technique for you. If you are a techie, you might find the analysis I performed on different pads and their storage capacity and leak points. I'll look it up if youlike.

In the meantime here is PeterDisAbelard's rule of thumb for changing them.
"I wear Depends underwear. I bought a package of pads before I bid farewell to Mr Foley and I used exactly one of them. The extra absorbancy of my comfy socks is all that saved my shoes that day. Since then I have relied on the extra security of the pull ups.

How often I change them depends on how much I am leaking on any given day and how cheap I am feeling (they cost money).

As a rule of thumb, when you start to develop an ice skaters stride -- waiting for the pendulum to start to swing back the other way before you take the next step -- you are not changing them often enough."
(I love that guy!)

Here's something important to remember. No matter how uncomfortable and debilitating it feels now, incontinence can be fixed. 2/3 of guys are dry at 3 months. Of the remaining 1/3, 2/3 of them are dry in a year. If you are one of the "lucky" 1/9 plan on having surgery to get it fixed. You won't regret it. I sure don't.
Good luck!
Jeff

Don,

A common athletic supporter with a pad or pouch inserted keeps the penis/leakage from slipping off to the side. Common boxers can be worm over the athletic supporter if needed.

pasayten

donft.

As you can tell, we are a close brotherhood and willing to share anything and everything. You should get to the point that you are seeking on the continence front and then other good things should continue.

Best wishes and don't hesitate to start a new thread to: (i) ask questions, (ii) validate your feelings and emotions, (iii) and vent. We all have vented from time to time on HW. We all deserve to do it and within seconds/minutes of posting a thread you get to see others who have been there, done it and moved on.

My positive attitude is a survival technique I have had to learn at an early age and used frequently throughout life. A simple little miracle like a sunrise or sunset does wonders for my soul.

You should get where you want to be or at least happy enough to be with continence. Don't let it get you down. Try and turn the frustration to humor about it. With my hormone deprivation treatment, I put Shania Twain's "I feel like a Woman" song on and play it a few times during the week and I don't have a testosterone truck like the commercials a few years back with all the construction guys in it. That was a classic commercial.

Good luck.

Hey Donft - Man! Your posts are hitting home.

I'm sorry this is depressing you. Believe me, I understand. I had my surgery 4 years ago and my comments and questions at 2 months were just like yours. (If you have the patience you can look them up.)
Don't mess up the marriage because of this. My big realization was that it became my job to "fake it until I make it". I did not tell people at work. I did not tell friends. I did not even tell my own mother! That forced me to "handle it" and do it without drawing attention to myself.
I am not a doctor or therapist so ignore my advice. Got it?!
Here's what I did. I tracked my pee production closer than NASA tracks the astronauts. I weighed every pee pad and cup. I would pee into a cup - even in the shower! I made an Excel spread sheet and plotted it. I knew my input and output very well. I reduced my usual liquid consumption to the level that I considered reasonable - 30 to 36 oz per day. If I had a dehydration headache, I would drink an extra 8 oz glass of water. That reduced the volume going into my pee pads. Big difference.
Have you learned to push your perineum after you pee? It empties you out completely. One of the guys here told me about it. Do it in a stall so you don't get arrested for performing a sex act in public. :shock:
Don't let PCa take away any more of your pride and self-respect than it has already. Get dressed, even when you are home.
OK here's the really big one.... I know everyone says communication is the best thing for a strong marriage. I call BS! Don't subject your wife to all the negative feelings you have inside. Vent here. Don't vent to her. Let her think you are recovering. Yep! You read it here first folks! Lie! Smile and act normal even if your balls are soaked. She does not want to think of you in diapers. Oh, and in case she asks, the answer is "No those jeans do not make your butt look big."
If you are fortunate enough to have a chance at a romantic tussle don't drink anything 2-3 hours before bed. Just before bed, pee and perineum push while taking a shower. Drink a few mouthfuls of water then and hit the sack. Say nothing about your issues. You might get lucky. I can't tell you how many times I showered before bed and ended up a little sad because nothing happened. Just swallow the frustration and say nothing. Read a book. Everything is normal. Believe it or not your wife is going through this mess too. Lighten her load and you might get lucky.
PCa already got your prostate, your dignity, and a good part of your confidence. Don't let it get your marriage, too.
Fake it till you make it.

Comfort yourself with the knowledge that no matter how badly you leak, you can get it fixed. Unfortunately you will have to wait a year to get it done. You can do it.

My email address is listed. If you want to talk, shoot me an email and I'll call you. Use a fake account if you like.

Fake it till you make it.

Jeff

In the remote case that my better half reads this: "No they really don't make your butt look big." And "I really took that shower before bed because I was sweaty from cutting the grass. I had no intention of rolling between the sheets. Furthest thing from my mind. Relax."

Donft,
TRY not to compare yourself to others that got dry quickly. Easy for me to say now, I have been struggling with incontinence since last July. I was 5-6 pads a day until 2 months ago. Then, no Depends, just 2-3 pads in regular underwear. I felt almost normal, no baggy Depends just soft cotton briefs!

I started pelvic floor rehab yesterday and I am wearing my 5th pad TODAY as I am typing this.

Go figure, just having a bad day today for whatever reason.

"Acceptance is the answer to all my problems today". I can't tell you how many times I prayed to get help overcoming my incontinence. It will happpen when it is suppose to, in God's time not ours. You just need to do your part, kegels, diet, exercise, etc.
It will come.

I have to agree with Peter, I did change my priorities after seeing ED was not going to be as big a problem as the incontinence issue. I started out as Purg said but changed midstream, so to speak.

As for your wife, cut her some slack. She has gone through a lot herself. What we are going through physically, our partners are going through a lot, emotionally!

It will get better! What you are going through is the worst part of the journey.

Regards,
Bill from Florida

Donft

You're a data geek too?!?! You're new here so you probably don't know about my data plots. It was quite a running theme. I used to count pee pads but that was not accurate enough. I started to weigh them on a Mettler lab scale good to 10 millgrams. I plotted the data in Excel using daily, 2 day average, 3 day average and forecasting with linear, 2nd and 3rd order polynomial and decaying function of e curve fits with confidence limits. I'd print it out every few days and hang it on the refrigerator like my kid's 2nd grade drawings. That stupid chart showed me that I was improving, even though I thought I was not. I used the forecast to predict when I would be at zero (my predicted dry date) and subtracted the predicted dry date from the current date to get "days to dry". That showed me how long I had to wait. "Only 200 more days! I can stand that!" "Only 180 more days! I can stand that!" I watched that number decrease until I noticed something strange. The "days to dry" were not always decreasing as fast as the days past. Stick with me here...This is important! I calculated the change in the "days to dry" from week to week. Ideally that number should be 7. Meaning if I was at 180 days to dry and I wait a week, the number should read 173. That would be a "dry progress slope" of 1. (7/7) In the beginning that number was greater than 1 "Wow! I knocked 2 weeks off my waiting time in a week! Those kegels must be working!" Great!

Since I took data every day, the confidence limit curves got tighter and tighter and the results carried more gravitas. I watched the "dry progress slope" like a hawk. It got to less than 1 at about 10 months. It got to 0.5 at about 12 months. :-( And then it hit zero near 14 months. My forecasted dry date was - never! That's when I decided absolutely to have surgery. There was no discussion, no thinking about it, no come back in 3 months and test again. The data told me all I needed to know. I had the surgery. Done! The only one frowning was the CEO of Kimberly Clarke. His bonus went down a millionth of a cent from the lost sales.
Have we wrung that issue to ground yet?

Now about the other issues: depression, marriage... I've always been a "can do" kind of guy. If I hear about a problem I have to do something about it. If I don't see progress I figure that I'm taking the wrong approach and a new tactic is needed. In my mind any paid therapy that goes for a long time needs to be reexamined and reconsidered. What changed from the last session? Did I learn anything? Was there progress? Did the "date to fixed" state improve? If not, why am I paying money for this? I can throw money down a rat hole and save the time and gasoline. If the date to fixed is "never" a new tactic is needed.
Don't let a wet winky ruin your life or marriage. Grab hold of it and take charge. Fake it till you make it!

You know how to reach me.
Jeff