Looking for Incontinence Suggestions

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tdnjam
Veteran Member


Date Joined Jan 2013
Total Posts : 531
   Posted 1/2/2018 10:30 PM (GMT -6)   
So I am essentially 100 percent incontinent. Thank goodness for the penile clap. However, because I limit usage of the clamp to about 8-9 hours a day, I can still easily go through 10 pads a day. Without using the clamp that number can double. So I am looking for any ideas or recommendations in an attempt to get some type of control over my incontinence and type of product to use. I currently use Depends Guards but it is getting so expensive. Also I have had a few accidents where I completely soaked my pants and the pads just didn't do the job. Mighty embarrassing when I am out shopping and it happens. So do you heavy leakers have any suggestions or have you found something better than what I am using?

(Edited to provide subject)

Post Edited By Moderator (Tudpock18) : 1/3/2018 5:24:08 AM (GMT-7)


Saipan Paradise
Veteran Member


Date Joined Sep 2017
Total Posts : 787
   Posted 1/2/2018 10:50 PM (GMT -6)   
Have you looked into getting an AUS, artificial urinary sphincter? If you search AUS on HW, you’ll find several threads about them.

oldbeek
Regular Member


Date Joined Sep 2017
Total Posts : 209
   Posted 1/3/2018 12:51 AM (GMT -6)   
Good friend has an AUS. Had it for 7 years. Says it is the best thing he ever did. He was telling me about it when I was just out of surgery.
76 very active. Physically fit. PSA 6, MRI Targeted biopsy 6/17 Gl 4+3 9%, Chose RP without consultation 7/28/17 Post RP <.02 PSA ,16 lymph nodes & nerves removed, pT3a, pin, negative margins, Total ED using bimix, still one pad a day

tdnjam
Veteran Member


Date Joined Jan 2013
Total Posts : 531
   Posted 1/3/2018 2:12 AM (GMT -6)   
Thanks for the suggestion, but I have been down the AUS road and it was a nightmare. I posted about it last summer. Sadly for me it is not an option.
Age 62, Diagnosed at 58
6/12-PSA 4.6, Biopsy 12/19/12 Positive 4 of 12
DaVinci 2-14-13
Updated Gleason 4+3=7
First post op PSA 4-5-13 Undetectable
15 month post op PSA 5-16-14 0.3
Started SRT 6-25-14
Ended SRT 8-12-14
1st post SRT PSA 9-24-14 0.1
1year post SRT PSA 9-18-15 <0.1
18 month post SRT 3-10-16 <0.1
2 year post SRT 9-26-16 <0.1
31 month post SRT 5-1-17 <0.1

Saipan Paradise
Veteran Member


Date Joined Sep 2017
Total Posts : 787
   Posted 1/3/2018 4:36 AM (GMT -6)   
tdnjam said...
Thanks for the suggestion, but I have been down the AUS road and it was a nightmare. I posted about it last summer. Sadly for me it is not an option.

I’m out of suggestions, tdnjam. I assume you’ve looked into the sling too, then. Just curious, what’s your urologist have to say? Also, have you measured how many ml of urine you’re passing into pads daily? When I was using pads, I felt like Depend Guards could hold a heck of a lot of pee. It really surprises me to hear you’re going through 8-9 a day.
Sorry I can’t be more helpful. Hopefully someone else will chime in with an idea.

tdnjam
Veteran Member


Date Joined Jan 2013
Total Posts : 531
   Posted 1/3/2018 7:40 AM (GMT -6)   
Saipan, yes I discussed everything with my Urologist. After the failed AUS he suggested the penile clamp. You are right, the pads do hold a significant amount of urine, for me approximately 8 to 10 ounces and I can fill a pad in less than an hour. I was hoping to find a less expensive option. I appreciate all of your suggestions.
Age 62, Diagnosed at 58
6/12-PSA 4.6, Biopsy 12/19/12 Positive 4 of 12
DaVinci 2-14-13
Updated Gleason 4+3=7
First post op PSA 4-5-13 Undetectable
15 month post op PSA 5-16-14 0.3
Started SRT 6-25-14
Ended SRT 8-12-14
1st post SRT PSA 9-24-14 0.1
1year post SRT PSA 9-18-15 <0.1
18 month post SRT 3-10-16 <0.1
2 year post SRT 9-26-16 <0.1
31 month post SRT 5-1-17 <0.1

RobLee
Veteran Member


Date Joined Apr 2017
Total Posts : 888
   Posted 1/3/2018 8:22 AM (GMT -6)   
tdnjam, I am sorry to hear about your situation. I was near fully incontinent for a year and went thru a dozen diapers a day. Pads and shields just didn't hold enough. Early on I started using external catheters. My best choice was /www.amazon.com/Freedom-Clear-Advantage-Aloe-Vera/dp/B00XTBSX56/ref=sr_1_sc_2_s_it?s=hpc&ie=UTF8&qid=1514985064&sr=1-2-spell&keywords=external+catheters+ffeedom+silicone+aloe

If the link doesn't work they are Freedom Advantage Silicone w/Aloe. They're a buck or two each and last a couple days. The best leg bags are Rusch 1000ml also around two buck each. Clamps didn't work for me at all, but I would go a day or two a week with diapers to allow little Dicky to air out.

Now I have the AUS. It's been six months or so and still becoming accustomed to it, but life is definitely much easier now. I'm guessing that you are probably not a candidate for the sling. Good luck with whatever you decide to do. Both the icons under my name should work if you'd like more info.
2014-15: PSA's 9, 12, 20, 25... Neg DRE's, false neg TRUS biopsy
6/16: MRI Fusion biopsy, Right Base, 2x40%+2x100% all G8 (4+4)
8/16: DaVinci RP, 6mm EPE, PNI, 25% G4, BL SVI, stage T3B N0M0

1/17: started 18 months Lupron ADT, PSA's ~.03
5/17: AMS800 AUS implanted, revised 5/30
39 tx RapidArc IMRT (70 Gy) Aug-Oct 2017

tdnjam
Veteran Member


Date Joined Jan 2013
Total Posts : 531
   Posted 1/3/2018 8:37 AM (GMT -6)   
Thanks RobLee. I remember you were undergoing your AUS last summer about the same time as my failed AUS surgery. So happy that AUS is working for you. Forgive me, but I just can't go the catheter route. My experience with catheters during my AUS nightmare has scared me away from them. The biggest help for me so far has been the penile clamp. It does work for me, but it starts causing a bit of irritation after about six hours.
Age 62, Diagnosed at 58
6/12-PSA 4.6, Biopsy 12/19/12 Positive 4 of 12
DaVinci 2-14-13
Updated Gleason 4+3=7
First post op PSA 4-5-13 Undetectable
15 month post op PSA 5-16-14 0.3
Started SRT 6-25-14
Ended SRT 8-12-14
1st post SRT PSA 9-24-14 0.1
1year post SRT PSA 9-18-15 <0.1
18 month post SRT 3-10-16 <0.1
2 year post SRT 9-26-16 <0.1
31 month post SRT 5-1-17 <0.1

RobLee
Veteran Member


Date Joined Apr 2017
Total Posts : 888
   Posted 1/3/2018 1:32 PM (GMT -6)   
Just so you understand, the external cath is not in any way like the kind of catheter that goes inside you. It is like a condom with a small tube on the end of it. You roll it on just like a condom, but it has a mild adhesive coating so it seals and keeps urine from leaking out. Your pee goes out the end, thru a hose and into the leg bag.

Some guys get scared away because it is a lot of plumbing to manage, but in many ways it is better than pads because you don't have the wet padding against your skin. Actually I had very few problems during the year that I used them. The hardest part was finding the style and size that I liked best.
2014-15: PSA's 9, 12, 20, 25... Neg DRE's, false neg TRUS biopsy
6/16: MRI Fusion biopsy, Right Base, 2x40%+2x100% all G8 (4+4)
8/16: DaVinci RP, 6mm EPE, PNI, 25% G4, BL SVI, stage T3B N0M0

1/17: started 18 months Lupron ADT, PSA's ~.03
5/17: AMS800 AUS implanted, revised 5/30
39 tx RapidArc IMRT (70 Gy) Aug-Oct 2017

tdnjam
Veteran Member


Date Joined Jan 2013
Total Posts : 531
   Posted 1/3/2018 2:03 PM (GMT -6)   
Thanks for the clarification, RobLee. I will look into it.
Age 62, Diagnosed at 58
6/12-PSA 4.6, Biopsy 12/19/12 Positive 4 of 12
DaVinci 2-14-13
Updated Gleason 4+3=7
First post op PSA 4-5-13 Undetectable
15 month post op PSA 5-16-14 0.3
Started SRT 6-25-14
Ended SRT 8-12-14
1st post SRT PSA 9-24-14 0.1
1year post SRT PSA 9-18-15 <0.1
18 month post SRT 3-10-16 <0.1
2 year post SRT 9-26-16 <0.1
31 month post SRT 5-1-17 <0.1

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 419
   Posted 1/4/2018 10:13 PM (GMT -6)   
I have aus successfully for 7 years. Sorry it did not work for you.
If you have not tried Tena pads you should. They have 4 levels and the level 4 hold a lot more than Depends.
66 yr old male 2008
PSA jumped 3 to 8 Jan 2008
pt2b NO Mx with a Gleason score 3+3=6.
DaVinci RP, 7/23/08. Tumor type: Acinar
Incontinence & ED. Dry nights , no control during day.
FUDS and cystourethroscopy testing 10/09.
Virtue sling surgery 2/3/10 NYU med center
Appeared to help but returned to pre sling condition.
AMS 800 AUS implanted 7/8/10 at U of MI
AMS 800 still working fine 12/1/16

tdnjam
Veteran Member


Date Joined Jan 2013
Total Posts : 531
   Posted 1/5/2018 3:16 AM (GMT -6)   
tallguy, I have not tried Tena pads. I will certainly look into them. Thanks!
Age 62, Diagnosed at 58
6/12-PSA 4.6, Biopsy 12/19/12 Positive 4 of 12
DaVinci 2-14-13
Updated Gleason 4+3=7
First post op PSA 4-5-13 Undetectable
15 month post op PSA 5-16-14 0.3
Started SRT 6-25-14
Ended SRT 8-12-14
1st post SRT PSA 9-24-14 0.1
1year post SRT PSA 9-18-15 <0.1
18 month post SRT 3-10-16 <0.1
2 year post SRT 9-26-16 <0.1
31 month post SRT 5-1-17 <0.1

EdN
New Member


Date Joined Nov 2017
Total Posts : 2
   Posted 1/21/2018 5:45 PM (GMT -6)   
You can only find Tena pads at CV, on Amazon or Rena's website, I believe.

RobLee
Veteran Member


Date Joined Apr 2017
Total Posts : 888
   Posted 1/21/2018 6:52 PM (GMT -6)   
I get Tena pads from Amazon, the ones for "moderate" absorption are the cheapest. It's about ten bucks for a pack of 50 or so. The package has three drops printed on the top. Tena pads backing is quieter and not as noisy as other brands when you are in public.
2014-15: PSA's 9, 12, 20, 25... Neg DRE's, false neg TRUS biopsy
6/16: MRI Fusion biopsy, Right Base, 2x40%+2x100% all G8 (4+4)
8/16: DaVinci RP, 6mm EPE, PNI, 25% G4, BL SVI, stage T3B N0M0

1/17: started 18 months Lupron ADT, PSA's ~.03
5/17: AMS800 AUS implanted, revised 5/30
39 tx RapidArc IMRT (70 Gy) Aug-Oct 2017
1/18: PSA 0.00, Now test every 3 months to find a trend

CopperGuy
New Member


Date Joined Sep 2012
Total Posts : 13
   Posted 1/21/2018 8:23 PM (GMT -6)   
Have you considered the AFEX system (www:arcusmedical.com)? It consists of a receptacle that is inserted in a special pair of briefs. You put your penis in the receptacle (no adhesive). The receptacle attaches directly to a collection bag (no hose). I initially used the special briefs but then they added a jock strap type unit that worked better for me. I would also suggest the use of a cotton cover they have that fits over the collection bag. It prevents the bag from sticking to your leg when you are warm or it is warm outside. They also have a strap that fits around your penis to prevent it from popping out of the receptacle if your penis is retracted.

I used their system when I was driving longer distances & didn't know if I could make it to the next rest area. The initial cost is high & the cleanup at the end of the day is a pain, but they do work. I recently had an ATOMS sling installed so don't expect to be using my AFEX system much anymore.

tdnjam
Veteran Member


Date Joined Jan 2013
Total Posts : 531
   Posted 1/22/2018 4:04 AM (GMT -6)   
CopperGuy, thanks for the information. I will look into it.
Age 62, Diagnosed at 58
6/12-PSA 4.6, Biopsy 12/19/12 Positive 4 of 12
DaVinci 2-14-13
Updated Gleason 4+3=7
First post op PSA 4-5-13 Undetectable
15 month post op PSA 5-16-14 0.3
Started SRT 6-25-14
Ended SRT 8-12-14
1st post SRT PSA 9-24-14 0.1
1year post SRT PSA 9-18-15 <0.1
18 month post SRT 3-10-16 <0.1
2 year post SRT 9-26-16 <0.1
31 month post SRT 5-1-17 <0.1

bill2009
New Member


Date Joined Oct 2017
Total Posts : 7
   Posted 1/22/2018 1:38 PM (GMT -6)   
Good luck, some simplistic thoughts:
1) Would it be an option to reduce your fluid intake? Right after my surgery i was trying to drink 2L of fluid daily and using 4-5 pads. My surgeon told me i didn't need to over-drink and I cut down to <1L per day and 1-2 pads.
2) Do you leak while you're sitting or lying down or just walking around?
3) I know this sounds dumb but i reduced my pad use by switching to the heavier Tena level 3 pads which can easily hold 5 ounces of fluid.
69 yo DX 2013
4 yrs active surveillance - multiple biopsies showed Gleason 6
PSA increased steadily to 11 by July 2017
MRI showed multiple Pirads-4 lesions
da Vinci RALP - Oct 5
catheter removed Oct 16
Path results showed Gleason 7, clear lymph nodes and margins

tdnjam
Veteran Member


Date Joined Jan 2013
Total Posts : 531
   Posted 1/22/2018 1:50 PM (GMT -6)   
Bill, thanks for the response. Concerning your recommendations. Reducing my fluid intake really isn't an option because of kidney stones and diabetes. I don't think I am over drinking but one of my diabetes drugs really makes the urine flow and changing it is not an option.
about the only time I can hold it to some degree is lying down on my side but there have been accidents when I drank too much water. My Uro says I have a strong sphincter muscle as evidenced by the way I flinch/tense up whenever he scopes/caths me. So I am guessing it just doesn't close the whole way.
I have tried a sample Tena pad and plan to buy a package as soon as I run out of my Depends and hopefully receive some coupons. Pads are getting expensive considering I can through a package in less than a week. When I have weighed them, my pads have been holding 8 to 10 ounces of urine....and that can be within an hour or so. That is one reason I have to use the penile clip, which has help considerably.
Again, thanks Bill and everyone else who has offered suggestions.
Jim
Age 62, Diagnosed at 58
6/12-PSA 4.6, Biopsy 12/19/12 Positive 4 of 12
DaVinci 2-14-13
Updated Gleason 4+3=7
First post op PSA 4-5-13 Undetectable
15 month post op PSA 5-16-14 0.3
Started SRT 6-25-14
Ended SRT 8-12-14
1st post SRT PSA 9-24-14 0.1
1year post SRT PSA 9-18-15 <0.1
18 month post SRT 3-10-16 <0.1
2 year post SRT 9-26-16 <0.1
31 month post SRT 5-1-17 <0.1
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