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Incontinence & TUIBNC

gwh11
Posts: 4
Joined: Apr 2021

I had my prostate removed 8 years ago. My PSA started to increase immediately after surgery so I went through radiation. To my knowledge I have been cancer free since the radiation. I had not struggled with incontinence but started having issues the last year with weak stream and dribbling. My Urologist wanted to do a transurethral incision of the bladder neck to remove some of the scar tissue from radiation. I am 2 months out from this surgery and sometimes have to catheterize myself after sleeping as I block completely off. I have control of my bladder when sitting or sleeping but if I am standing or walking I am completely incontinent. My questions are two fold. 

1. Has anyone experienced anything similar and what was the outcome?

2. I have not learned to successfully control my incontinence. I use depends briefs and maximum pads and change them as often as I have the opportunity but still end up wet usually at least once a day. I would appreciate any help with what products work best or if there is a system of controlling my fluid intake that may help. I tend to use the pads during the day because changing the briefs when out is not very convenient.

Any help will be greatly appreciated. My DR just says this doesn't make sense and we are in a wait and see mode currently. I know I am fortunate to be cancer free but if this continues am facing a big change in quality of life. I also still have intermittent pain in my scrotum and burning if I am active. My Dr thinks this is because the scar tissue is slow to heal. 

Thank you

 

Josephg
Posts: 287
Joined: Jan 2013

From what you are describing, it appears that you have total vertical incontinence.  I have this condition for the rest of my life following my original robotic RP, and the solution is to get an AMS 800 artificial sphincter implant.  Many folks on this Forum, including myself, have received this implant, and it is a COMPLETE game changer for restoring your quality of life.  As you know, there is no quality of life, when you are totally vertically incontinent, and the AMS 800 gives you the opportunity to restore your quality of life.  It certainly did for me. 

This implant is fully covered, if you have Medicare and a Medicare Supplemental insurance policy.

Check it out.

https://www.bostonscientific.com/en-US/products/artificial-urinary-sphincter/ams-800-urinary-control-system.html

gwh11
Posts: 4
Joined: Apr 2021

Thanks for the information will look into it AMS 800. The term you used vertical incontinence definately describes what I am experiencing but never heard it used before. Is there a specific cause for this? or discription? My Dr just says it doesnt make sense.

Josephg
Posts: 287
Joined: Jan 2013

For me, the nerves controlling that portion of the sphincter (the urinary side, and not the bowel movement side) were disturbed/severed during the prostatectomy, while the surgeon was attempting to obtain clean margins, clearing the area of cancerous tissue.  The nerves never recovered to the extent that they kept that portion of the sphincter closed automatically.  I can manually close that portion of the sphincter, but if I am not consciously trying to keep it closed, it opens up and remains open.  I did Kegels religiously for over a year, but the automatied closure action of the sphincter never returned.  As my Urological Surgeon put it, when performing a cystoscopy, "The barn door is wide open."

gwh11
Posts: 4
Joined: Apr 2021

Thanks Josephg. It sounds identical to what I am experiencing. After I have sit for awhile or laid down I can go to the bathroom and develop a stream and can stop it but only for a second and then it starts back at full flow. I had control after my prostatectomy and radiation even though my cancer had spread and they had to remove the seminal vesicles.  After the bladder neck incisions is when I started having trouble about 8 or 9 weeks ago. I also had a few times I had to catherize myself after sleeping as I could not start the flow back. That is happening less and less often. Now if I am standing and there is urine in my bladder I am leaking. I thought I could handle this but I have had to stop almost all activity and limit my time without a bathroom to change pads to an hour or so as I have not been very good at predicting how much urine I will have. I am on medicare so sounds like AMS 800 will be an option. Do you know why sitting or laying down stops the flow? 

Thanks again.

Josephg
Posts: 287
Joined: Jan 2013

I believe that it is simply a matter of physics.  Gravity has its greatest impact on your accumulated bladder urine passing through your open sphincter, when you are in a vertical position.

I know exactly what you mean, when you state that you have to 'pre-plan' any activities, so that you can control your incontinence to the greatest extent possible.  And, despite your best efforts, you realize that you cannot really contol your incontinence to the extent that you need to, unless you radically change and/or limit your desired activities in life.  For me, I had about a 2 hour window of time, whenever I left my house to do something, and that was when I was not being 'active'.  If I had to go to Home Depot and load some studs or plywood into my truck, that window collapsed to about 1 hour.  So, my life had become divided into increments of 1 hour to 2 hours, whenever I left my house.

And, that's where the 'quality of life' question comes into play.  Are you willing to accept the trade-off of limiting your desired activities, at the expense of your quality of life?

For me, the breaking point was when I attended an outdoor barbeque at an extended family member's place.  I had 'pre-planned' my activities, so that I would not be too active, and not participate in games like horse shoes or any other activities that made me move quickly, or stand for longer periods of time.  I also packed extra Depends and large pads, with the intention of changing them as needed throughout the day, which I did.  And, as you know, you do not really notice or 'feel' urine passing through your sphincter, when you are vertically incontinent.  I was sitting in a fabric lawn chair, not my own, and when I got up, I could feel the urine on my leg, and noticed that my Depends and pad had filled and overflowed.  The urine went through my pants and all over that other person's chair.

It was at that moment that I decided that I was not going to accept my vertical incontinence any more as part of my daily life, with it limitations and reduced quality of life.  The next day, I contacted my Medical Oncologist, who referred me to a Urological Surgeon to implant the AMS 800 into me.  I can personally tell you that after receiving the AMS 800 implant, my quality life in that area of incontinence has been fully restored.

It is time for you to decide what you are going to do in your own case.  The surgery is not trivial, but it is completely manageable.  If you want to explore some of my post-surgery healing and learning how to use the AMS800 experiences, you can take a look at my posting links below:

http://csn.cancer.org/comment/1324584#comment-1324584

http://csn.cancer.org/comment/1326323#comment-1326323

http://csn.cancer.org/comment/1339326#comment-1339326

http://csn.cancer.org/comment/1339561#comment-1339561

http://csn.cancer.org/comment/1344785#comment-1344785

http://csn.cancer.org/comment/1413239#comment-1413239

gwh11
Posts: 4
Joined: Apr 2021

Thanks so much. I believe I am on the journey towards doing this as I have not learned to live with the incontinence. spoke to my Urologist this morning and he wants to work on my other issues first. Antibiotics for pain and rapaflo for weak stream and trouble starting flow mainly after sleeping. I was having to cath myself at night But haven't had to do that in a couple of weeks. He mentioned the AUS to me during our last conversation. Says the incontinence is a separate issue and will start to deal with that after we see where we end up in 30 days.

Ballpark002
Posts: 1
Joined: Apr 2021

I'm currently going on day 11 after surgery and day 3 after cathetur removal. General I been going through 10 pads during the day and peeing after first 3 hours of sleep and up every hour after the intial 3 hours to pee. Is this all normal ? I really fill ill prepaired.

Josephg
Posts: 287
Joined: Jan 2013

Completely normal.  After surgery, folks can take anywhere from 3 months to 15 months to regain 90+% of their original continence.  In my case, continence never returned, but my case is an outlier.  Do your Kegels properly, and religiously, with no shortcuts, as that is your best road toward regaining continence.

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