www.incontinentsupport.org

I can think of many other sites I'd rather be on, but maybe this is the site I need to be on. Here's why...

I am a Vietnam Veteran and I enrolled for VA medical care early last year. (I should have done this much earlier, but that's another story.) During a Primary Care physical - routine, right? - it was determined that my prostate was enlarged. That's not totally unusual for a man my age (68). As a precaution though the PC Doctor sent me to the VA Hospital in Providence, RI for a more thorough check and it was there cancer was suspected and, a couple of weeks later, confirmed after a TRUS biopsy. My PSA was 27+ and the biopsy revealed a Gleason score nearing 8; i.e., Advanced and Aggressive.

No male in my family on either side has ever had prostate cancer and most live well into their 80's and 90's w/o that problem. As such the only explanation for my cancer was Agent Orange exposure. I am now certified as a Disabled Veteran, 50 years after I presumably got home safely from combat service. Fast forward...

At the end of November last year my prostate was removed by Robot Assisted Laparoscopic Prostatectomy with Lymph Node Dissection. As the cancer had already gone beyond the prostate gland the surgeon "went wide" on both sides, removing not only the gland but both cavernous nerve bundles. My PSA is now "Undetectable" which is a big relief but...I am now 24/7 incontinent and going through an average of 3 - 4 "pads" per day. I hate this but the alternative would be death.

Background: The biggest problem I have with being incontinent and forced by circumstances to wear adult diapers goes back to my boyhood when, until I was nearly 18, I was a chronic bed wetter (primary enuresis) who had been put back into diapers at age 6. Like many kids who bed wet that long my self-esteem was (no pun intended) "in the toilet" and I hated being "me" for most of my boyhood. When I finally "got to dry" I lied to the Army about this problem and answered "No" on the question about "Bedwetting past the age of 12". I did this because of two reasons: I was too ashamed of having had this problem to tell anyone and I was determined to enlist and volunteer for Vietnam service with the idea that I would "either grow up or die trying" and it really didn't matter to me which so I did not want this to be the reason I was exempted from service. I just wanted the little "sissy boy" I felt like I was to be gone. By the time I got home that "boy" was dead and a "man" took his place. I stayed in the Army for 10 years after returning from 'Nam, was assigned to a Bomb Disposal Unit and, later, became a Drill Sergeant at Fort Dix. I was no longer that little boy by a long shot. After I left the service I got my college degree thanks to the GI Bill and had a three decades long career as a Senior Manager in a multi-national transportation company responsible for 1400 employees and an annual P&L of +65 million/year. The BOY was gone forever! Or so I thought.

And now I am back in diapers because of the very thing that had redeemed my self-esteem and forced me to grow up. And I hate it.

So, here's my question to anyone reading this who has gone through, or is now going through, the problem of post-prostatectomy incontinence: Will it ever end? Is there any chance I will be able to become continent again? If not, if this will be my life from now on, how can I live with it and not let it drag me back to a time when I just wanted to "grow up or die"? I know I sound like I am whining; and I hate that, too.

Anyone?

Paul,

Thank you though for your service in Vietnam, y'all got a bad deal coming back home. I can't answer your question concerning post-prostatectomy as my incontinence is from a stroke causing a Neurogenic bladder. Never thought at age 49 I would have to wear these things. Doing my own research on this subject it seems Veterans suffer more issues with incontinence. My guess is from all the things we get exposed to while in service. I find it interesting the Army asked about bed wetting after 12 on their entrance process especially during that time frame. I don't recall that being on the Navy questionnaire back in 1990.

There is a lot of great information buried in this forum, not to mention still present by people who visit here. I hope you have found the right protection for you from the VA. Many of us had to fight with the VA to get better quality products as the ones provided through the non formula didn't work.

Paul

While I have not had my prostate removed, I have had two TURPs for enlarged prostate. I have urgency incontinence and must wear diapers 24/7. I know advice is easy to give, sometimes hard to accept. However my advice is to not let wearing diapers slow you down. I lead a very active life and do not let a diaper stop me from doing anything that I want. I have accepted that I must wear a diaper.

When you talk with your doctor he/she may want you to take medications. They might work for you, however pills do not work for all. Many have unpleasant side effects. I have even told my doctor that I would rather wear a diaper than “take a pill”.

So wearing a diaper is not the end of the world. You can do anything you want. No one needs to know that you wear a diaper, unless you want to tell them.

I also want to thank you for you service as I am a Navy veteran,

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RetiredRN

Hi Paul,
From experience, the BOY is gone. As you have told us, you have matured and become the adult you can truly be proud of. Now, you are growing older, just like the rest of us. It happens a day at a time. To some of us it begins at a much younger age. I regressed (if you will) by the time I was 33 and not yet a father. This hits all of us at different ages and at different stages in our lives. I am now a father to two natural kids, and two others. I love them all and I look forward to the day I become a grandpa, and I will love them all no matter who comes first.

Your life is measured in your accomplishments, and so you need to think about that and slap yourself on the back for all that you have accomplished. What you have accomplished is far beyond your toilet training. Really. You have learned to lead teams of many people; probably across many cultures. How many future leaders have you inspired? That is far more difficult than potty training.

Speaking as one who has regressed on the loo, yet has become a leader of international teams, I applaud you for your accomplishments. You can wear diapers like the rest of us and you will do just fine at it. Keep it to yourself if that makes you comfortable, many of us have spouses who support us and keep us going when we are down. You have us, so vent when it bothers you, and eventually you too will be able to comfort others.

What you do that few others can, is lead. Never forget that. You may never regain your continence, just like many of us. But you are far more than your bladder control. So take the challenge and learn to smile in adversity. Welcome to our world, it's now yours too.

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- Tom

Howdy Paul

As a fellow vet (Air Force), Welcome to our little family here.
There are other people on here that have gone through the same thing so don't feel alone.
Feel free to ask any questions that you may have, im sure someone on here will be able to help you out.

Schoppy

Schoppy & all others who have posted replies to me,

I have "picked out" few key things you guys have said, have chewed them over, and maybe the most important thing is/was something I already knew or should have known; I'm not alone in this even though I have felt that way since my diagnosis and surgery. This has made me rethink my experience as a boy who really did feel so very much alone as an older kid who was a bed wetter.

But I am more than that now, right?

I did lead a team doing Combat Retrograde operations near and along the Ho Chi Minh Trail where it came into S. Vietnam from Cambodia. That was "hotspot" for Agent Orange use and exposure and is where I was likely exposed to that poison. But I was with a team there and it has hit me between the eyes to realize that, if I was exposed to AO, so were those other guys. I've been thinking about them; how many of them have died, are dying, or are in the same spot I am in now if they got lucky and had a good medical team like I did? I don't have contact with any of them now so I don't know the answer to that, but by feeling "alone" in this I realize that I have been selfish. They were my team and I need to step up to that and stop festering about myself.

I had a great career after I left the Army and - to this day - many former employees of mine stay in touch with me, not as my workers but as my friends. They still care about me but have I only cared about myself? I need to make that right.

And there was that "boy" I hated who was me. But he was me and just like he did all those years ago he is still in me, crying and feeling so alone. I need to make peace with him, don't I? I need to accept him - to accept myself - for what he was and for what he still is. Not a "bedwetting sissy-boy" but a kid who drew strength from what made him feel so weak. He survived and didn't "die" in Vietnam at all but became a strong and confident man. And I can survive and be strong again, too.

You freaking guys should all be awarded Honorary Degrees in Social Psychology for making this so plain to me so quickly!

As of today I am not going to hide this. I'm not going to be ashamed of buying adult diapers. I'm going to continue working on doing the Kegal exercises and if they help, great. If not, so what? At least I tried, right?

So...what can I do here to help someone else? Suggestions?

Paul,

Thank you for mention about being awarded Honorary Degrees in Social Psychology. I chalk that up too life experiences. Something happened while I was in the Navy which threaten to get me kicked out and possible lose my clearance. I was able to fight it with the help of my chain of command and succeeded. I cannot tell you how it felt not knowing back than if today was the day I would be processed out of the Navy. Thanks to that experience I look at things differently and people differently today. Gone are the days of judgement of people and their situations. In fact, I commend those people who have had to go through hell in their life and are still swinging. You are one of those folks Paul. Look at all you have accomplished and survived. The fact you have coworkers staying in touch with you after leaving work shows how much you have made an impact on their lives. I once had a sailor who got into trouble and was busted down in rank. I spent hours talking to him and really never thought about it once I left that command. Years later, I received a Facebook message from him thanking me for talking to him and convincing him to accept what happen and learn from it. He actually said thanks to me, he got his life together obtain his BA and is living a very nice life now. This made me sit back as a leader and take a breath. Never in my life would I have thought I would have an impact like that to someone. If the ones you led back than could find you I am sure they would thank you for your leadership and how you treated them. Have you tried to look them up via Facebook or by your platoon number?

I will not lie in the beginning I was so embarrassed having to go to the doctor and tell them I have been wetting my pants and having to carry items with me. It has gotten much better now as it has been many years that I have been doing this. This doesn't mean I don't have my days where I long to go back to where I didn't have to wear this stuff. One time my wife asked me what was wrong and I just exploded about this stuff. She understood and said maybe I should look into getting the surgery to tie a doughnut about my ureathra and if something happens we will over come the side affects. I don't want anyone cutting on me down there till I am much older and things don't work like they use too.

Have you asked the VA to supply you with what you are buying over the counter? This will save you a lot of money since this is service connected and since you are having to change 3-4 times a day you should be receiving a rating of 20% for incontinence http://www.militarydisabilitymadeeasy.c ... ystem.html Here is another link you can look up to see what is readily available with the VA. https://www.va.gov/nac/MedSurg/List If you find it on this link, Depending on how well your doctor's, nurses and pharmacy techs know how to order from this will depend on how hard it is to get them. It can be done.

I had a commander at Fort Sam Houston after I got back from 'Nam who helped me out a lot and your comment about how your chain-of-command helped you in a tight situation brought that back and is, again, another lesson once learned that I need to revisit in this situation.

Like a lot of guys coming back from that war I was an angry young man and sometimes "self-medicated" with booze and/or drugs in order to sleep through the night w/o nightmares. I lost it one day and punched out a more senior NCO who I thought was messing with me for no reason. I could have been - rightfully - court-martialed for this. But my CO (who was also a Vietnam returnee) took another tack: he limited my punishment to an Oral Reprimand under Article 15 of the UCMJ and then spent some time setting me straight on the PTSD I was (not!) dealing with. What he told me was that I needed to own my anger and experiences, not try to run away from them or deny them. I think I need to learn to own this situation also.

As to the VA Disability level, I am at 100% plus an additional bump for "loss of a reproductive organ". This is because the cancer I have, though currently under control, can come back at any future time if even a few prostate cancer cells "escaped" the surgery so incontinence is only part of the calculation. In addition, because of my high position and earnings in the corporate world, my retirement income is quite high. Between them I am in good shape, financially. As such, while I need the VA healthcare system, and rely on it, I don't want to "take" more than I need or already have from the VA as others may need it more than I do. I have therefore cancelled my prescription for the "pads" they initially issued me because they suck, quite frankly, and because I can well afford to buy better ones on my own dime.

The VA Urologist did discuss with me a couple of weeks ago two possible alternatives to the incontinence, but right now neither seems like anything I want to do. One would be the insertion of a "bladder sling" and the other an Artificial Urinary Sphincter. Either would require very invasive surgery and neither could be guaranteed long-term. Not sure I want to do that!

Prostate cancer cells grow and can metastasize when "fed" testosterone. If cancer cells are lurking somewhere in my body and are getting testosterone from my testicles which are still inact, the next step would be Hormone Suppression Therapy which can either be by chemical or surgical castration (bilateral orchiectomy) to stop the production of that.

You guys are making me consider these things and count my blessings. Thanks! In light of the alternatives I guess being incontinent isn't really all that bad; just inconvenient.

First of all, thank you for your Service!

Like you I Grew up with Incontinence issues, My dream as a child was to grow up and be a Fighter pilot, I Read every book about famous fighter pilots from WW1 to Vietnam watched any movie and tv show with that subject type I even had better than 20-10 vision, everything was perfect except I needed to wear diapers mostly at night but had many daytime issues. Growing up wearing a diaper is tough and very hard to battle psychologically. it was not till I was able to accept that I could not control this aspect of my life, but that IT did not have control over ME, this takes time but when you find a product that you can trust to be able to go to a movie or to work to keep you dry this becomes easier you find yourself doing more and it becomes easier, at some point the diaper becomes underwear, for 30 years now my underwear might be diapers to others but for me they are just underwear they allow me to work, live play just like everyone else. Sure I might go out my way to find a more private place to change, yes I need to make sure I have enough product to last for my vacation or business trip. and yes sometimes they fail and you have to live through an embarrassing moment but those are just Moments and we will have many more good and bad. My point is acceptance, once you can accept yourself and your situation you wont have the anxiety anymore if you don't allow the negative thoughts to build up they cant control you! I hope that kegal exercise work or the doctors find a medication /treatment for you that works it's very possible nowadays but if not you ARE a strong man, proven by your service "diapers" will never change that!

_________________
Incontinence does not Define NOR limit you!
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And thank you for your encouragement! It was only a couple of days ago I was ready to give up but, no, I'm not ready to do that thanks to guys like you. I came to this site in a "last ditch" effort to deal with my incontinence and to try and put it in some kind of manageable context given my boyhood experience as a bed wetter. I think I have done that; or at least I hope so!

I still feel kind of weird sitting here, now, at my computer while wearing a diaper and typing this reply. But then I think of how many may be reading this - or other posts here - while wearing diapers just like me. (OK, it's still kind of a weird feeling, but what the heck, who cares if I learn not to, right? )

Take care now and, again, thanks.

Paul