My Story II

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Hello All,

First off, I would like to thank everyone who read and responded to my original post a few days ago. I read every one of them and I appreciate all of the thoughts, support, and advise.
There were a couple of questions asked so I would like to answer them.
Urinary Physical Therapist, Yes, I have seen one. Not sure how much help mine was. Yes, she hooked me up the the bio feedback machine to measure my pelvic floor muscle strength, as well as to tell me if I was doing them properly. I was told that everything looked great and that if I continued doing these exercises that I should be able to go from my current 10 to 12 pads a day to as little as 3 to 4 pads a day in time. Not really what I wanted to hear but that is improvement. So, I keep doing them. Hasn't helped so far.
No body asked specifically however, I have 4 children and 5 grand children. My wife confirms that they will miss me when I'm gone.
Also, some additional information about me, this is my 2nd cancer battle over the last 2 years. I was diagnosed with stage 1 throat cancer two years ago and had to have a Radicle Tonsillectomy. The most painful surgery anyone can have, I believe. I lost 38 pounds in 3 weeks during my recovery.
As far as looking into the AUS surgery, I am doing research but will not be making that sort of decision for at lease another year or so.
On the psychological front, I trying to stay positive but it is not easy, as most of us here know.
I am trying to stay active. I have loaded up on pads and started shooting pistol matches again. Only one or two a week as opposed to the 4 to 5 a week before my RP surgery, but it's a start. I have also been back to work, construction and lawn mower repair. I just take it slow and try to keep my undees clean and fresh.
If anyone has any other questions, just ask and I'll try to answer them.

Jim
 
Glad you're doing better. I understand completely how it feels losing the control you previously had before. I was 22 when I lost complete urinary control from nerve damage after head trauma. It sucks. After awhile though I learned to manage it and not worry about it. I have heard great things about the AUS, though it unfortunately is not an option for me currently. My suggestion if you are needing that many pads a day is to probably change up your protection. Get something more absorbent that will last you longer. I wear the tapped briefs and am able to go with changing only 3 times a day generally. I look at them as underwear that serves a function. There is nothing bad about them. It's just another medical device to treat a medical problem.
 
Good to hear you are hanging in there and not giving up…as for pads etc I have incontinence 24/7 resulting from prostatectomy in 2016…I’ve posted earlier that I use the Afex system to deal with my problem because pads not an option due to leaking continually and I choose not the go with AUS because that’s invasive and potential adverse difficulties…

Here’s the link for the Afex option…good luck…😎

 
You’re a very strong fighter. Like to think of myself similarly, as I’ve coped with whatever life throws. I’m more than 5 years out post RARP at 75, and remain at <0.1 - the “real thing.” Very physically active weights, power yoga, desert xeriscaping on days off. Need a pad to 2/day. My urologists all advised that my incontinence wasn’t bad enough to warrant upsides of AUS. Many postings in this great forum have stated that they still need a pad or so/day. Many have said total dryness. But, as you stated, AUS is invasive and basically not one and done. Some last brief periods, others 4,5,7,8 or even 10 years for the lucky ones. These variations and need for replacement, have dissuaded me from chancing the surgery, not to mention 6-8 weeks of down time. Hate the idea of reclimbing the fitness mountain.
Probably the most important question is how incontinent one is and whether one can easily cope. What bothers me most is ED, and still haven’t tried injections. Anyway loved your story and keep on keeping on.
 
Kazindaw said:
Good to hear you are hanging in there and not giving up…as for pads etc I have incontinence 24/7 resulting from prostatectomy in 2016…I’ve posted earlier that I use the Afex system to deal with my problem because pads not an option due to leaking continually and I choose not the go with AUS because that’s invasive and potential adverse difficulties…

Here’s the link for the Afex option…good luck…😎

 
Jim,

I'm so glad to hear that circumstances are not so deeply bad as it sounded in your former thread! You're working well on the physical front, and trying to stay positive is for sure the right spirit.

You're telling that you are using around ten pads a day. From my perspective as UIC this shows me that you are probably using the wrong product. Changing ten times a day costs a lot of time, is inconvenient, sometimes embarrassing if leaking, needs - depending on activity - a lot of planning how to manage and could prevent you from many things you maybe would like to do.
I myself use belt type diapers, which are very easy to open if you are able to use the toilet and very quick and easy to change. They have enough absorbency that I have to change mostly only once over the day although being fully incontinent, and they are discreet enough that nobody else can ever tell as long as you are not wearing strict body shaped clothing. This allows me to live my active and social life in the same way as without IC.

In case you might have, get rid of the stigma, maybe shame or embarrassment, which is often connected with such absorbent products, there are so many different kinds, shapes and absorbency levels on the market available which allow you a much, much more comfortable life with your current (in)continence status!
 
Hi
I am 3.5 years post surgery and 100% incontinence in addition to taking lasix daily. I tried everything. I refused AUS because I’d be pressing the button all the time. I’m too active to use the Afex system.
I’ve been using the Men’s Liberty External catheter for over 3 years. They work for me. The bag is small but it allows me to have a normal life. I fish ,go to church do anything I want.
I am 75 and stay active . My insurance pays 100% for my supplies.
The catheter sticks on and bag hangs on leg in pouch .
Good luck don’t give up. God never takes us until we’ve finished what he has planned for us.
If you have any questions Email me privately .
WHall
Florida
 
I agree with many of the previous replies that you should probably increase your protection. My prostatectomy and removal of a large bladder diverticula was nearly 6 years ago. I had green light surgery over 10 years ago which helped for a short period of time. I have come to grips that I will need diapers for the rest of my life. I use the InControl Elite Hybrids that I purchase from their home company out of Canada. It is cheaper to purchase them from Canada as the dollar goes farther. The shipping is also quick...within a week. I am nearly 76 years old with heart issues and peripheral neuropathy which is why I do not want to try anymore invasive incontinence surgeries. Best of luck with how you proceed.
 
@Jim1256 Hang in there. Everyone is different and results are different. I am 8 months after the radical prostatectomy and my PSA is non detectable. I had pelvic pain with urge incontinence and frequency prior to the surgery. After the surgery I had the stress incontinence and was going all the time for ever activity. The Kegels aggravated the pelvic pain so I had to stop it. At about 7 months when doing activities the stress incontinence stopped. I thought it stopped because it was such an improvement but probably is about 1 to 2 pads a day. Something just kicked in. My pelvic pain is worse and I am attending physical therapy. The PT has taught me to get better I have to become less stressed by things and look to the positive.
I have six grandchildren with one more due in July. I take care of three of them when the parents work. They are the joy of my life. I have managed my incontinence with heavy protection but am learning not to stress about it. Wishing you the best. Enjoy your grandchildren. Tim
 
@Jim1256 so glad your hear and things might be getting a little better. It is no fun having this illnesses. Glad your hear!
 
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