Diaper substitute

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Viperguy
Regular Member


Date Joined Nov 2010
Total Posts : 259
   Posted 12/28/2010 3:41 PM (GMT -6)   
The thought of sitting in my own urine after the cath is removed makes me half sick.  Has anybody tried these condom caths after surgery?  I was exploring possibilites and ran across this one: 
 
 

2009 PSA 2.2
2010 PSA 3.2
Biopsy 24 cores 3 positive
Gleason 3 plus 3
Cancer believed to be contained in organ

Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4849
   Posted 12/28/2010 4:41 PM (GMT -6)   

I would find that way too much trouble.

Wearing pads isn't as bad as you'd think... But, if you're the kind of guy that changes his shorts/undies several times a day, I can see where pads might not be for you.

 


Viperguy
Regular Member


Date Joined Nov 2010
Total Posts : 259
   Posted 12/28/2010 5:50 PM (GMT -6)   
Hi Steve,
 
There is also another product out there that looks promising without the urinary mess.  Check this out and tell me what you think. 
 
 
 
2009 PSA 2.2
2010 PSA 3.2
Biopsy 24 cores 3 positive
Gleason 3 plus 3
Cancer believed to be contained in organ

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 12/28/2010 6:22 PM (GMT -6)   
viperguy: You might want to try to contace Knotreel. He uses the condom Cath. He will be having AUS installed on 1/11. But he can tell you more about the condom cath than you ever wanted to know.

Cajun jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
2 year PSA <0.1
Only issue at this time is ED but getting better

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 12/28/2010 6:38 PM (GMT -6)   
My post op instructions were to NOT "rely" on external catheters and to use pads/diapers. I did that for more than six months. I did use a condom catheter during that period for shopping trips and other occasions where the pad/diaper system was not convient. But after the physical therapy ( incontinence) was completed with no gain in control I switched to the catheter and leg bag system that I now use full time except at night. I am not sure why the catheter/bag is verboten but I guess it does not give you any feedback to leakage and you might be inclined to just let go of your efforts to control which I eventually did. But, if that is something you might want to try. Just order some external catheters, extension tubes and leg bags and try them. I order mine from Allegero Medical ( easily found online) . I tried pretty much all the different types but the ones I like best are the Hollister extended wear. Hollister makes good bags too but I use anther brand now but the hollister bag would be a good place to start. Try the 500cc as the 1000 is a bit large for everyday use, I think.
I doubt you will end up like me, 100% incontinent, most people get have signifigent progress before their 2 month aniversary. But on the other if you can't abide the pad/diaper system......
As for the one you picked , I don't think I would like it, unless I didn't look at it carefully, it appears the urine is stored in a ballon type bag that is basically attached to your penis, this might be more appropriate for someone in a wheelchair or bedridden?
Anyway, you might just want to store this info away in the back of your mind for awhile and give the pad/diaper system a go. You might be surprised in how fast you are able to gain some control, or at least I hope you are.
Ron
 
PS , I might add to Jeff's (corvetteman) coment, more than I ever wanted to know for sure!
06-08 1st biopsy neg psa 4
10-09 psa 5.5 2nd biopsy 1/12 pos. 10%, G(4+3) age 65
12-15-09 RRP Tulane NOLA Dr Lee
Path, 1%, clr marg, no EPE, no SVI, nodes cl, G(4+3)
100% incontinent after 3 mo. PT
ED, pre-op severe, post op total
10/10 Dr Boone, Baylor recomended AUS
AUS and IPP scheduled 1/11/11
post op psa's 0.04,<0.1,<0.1,0.01@12 mo.

Post Edited (knotreel) : 12/28/2010 4:41:13 PM (GMT-7)


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 12/28/2010 6:42 PM (GMT -6)   
thanks Ron. I knew you were the one with the answer.


Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
2 year PSA <0.1
Only issue at this time is ED but getting better

joebed
New Member


Date Joined Nov 2010
Total Posts : 7
   Posted 12/28/2010 7:49 PM (GMT -6)   
Don't get too up tight just yet on this peeing your pants. I was worried sick too. I got the cath out yesterday and just used one pad untill bed time. I put in a new one then and wore it all day today. I have just been having a squirt here and there. When I cough or sneeze or laugh. Not bad. I guess I am one of the lucky ones.
10/5/10 PSA checked, shows 6.3 Year before it was 3.2
10/12/10 Urologist Dr feels hardness on side of prostate.
10/19/10 Biopsy performed diagnosed cancer on both sides. Gleason score 3+3=6. Stage T2a.
10/28/10 Bone scan shows OK
11/1/10 Meet with Dr to discuss options. Surgery versus Seeds.
11/8/10 Meet with Radiologist to discuss seed implant.
12/16/10 DaVinci surgery
12/27/10 Catheter removed. Gleason score 3=4=7 Stage T2c All clear except tumor present at surgical margin.

Viperguy
Regular Member


Date Joined Nov 2010
Total Posts : 259
   Posted 12/28/2010 8:28 PM (GMT -6)   
Thanks for the feedback.  My surgery will most likely be in March (time for biopsy to heal).  I am exploring all continence options and can't see myself returning to work with an adult diaper.  The work thing is more pyschological than physical.  I even thought about disability retirement if incontinent for an extended period.  I have been a competitive weight lifter most my life and can imagine prostate surgery ruining any chance at lifting without leaking. 
 
It's going to take me a long time to adapt to this major life change.  I'm a nervous wreck. 
2009 PSA 2.2
2010 PSA 3.2
Biopsy 24 cores 3 positive
Gleason 3 plus 3
Cancer believed to be contained in organ

Jazzman1
Veteran Member


Date Joined Sep 2010
Total Posts : 1163
   Posted 12/28/2010 8:36 PM (GMT -6)   
Viperguy,

You might want to withhold judgment on what it's like until you get there. You might end up having very mild incontinence, and it might not be nearly as bad as you think. I'm as frustrated with my post-surgical incontinence as anyone, but I think you need to see what you get and try to keep your sense of humor. You can always resort to drastic action later if it becomes necessary.

To paraphrase Charlie Brown:

Peeing in your pad is like doing a good job at work. It gives you a nice warm feeling but nobody notices.
Age 55
PSA: 8/09 2.69 -- 7/10 4.00 -- 8/10 4.11
--------------------------------------------------
Biopsy 8/10
Three of 14 cores positive: 10%, 60% & 80%
Stage T1C; Gleason 6
---------------------------------------------------------------
open radical prostatectomy at Cleveland Clinic 11/2/10
Post-surgical pathology: Gleason 7 (3+4)
Three positive margins; Stage T2c(+)
12/7/10 PSA: <.03

Viperguy
Regular Member


Date Joined Nov 2010
Total Posts : 259
   Posted 12/28/2010 8:59 PM (GMT -6)   
That's the first time I have laughed in quite a while.  Charlie Brown has a good point there. 
2009 PSA 2.2
2010 PSA 3.2
Biopsy 24 cores 3 positive
Gleason 3 plus 3
Cancer believed to be contained in organ

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7087
   Posted 12/28/2010 9:08 PM (GMT -6)   
Viperguy,
 
The comments suggesting that you wait before dealing with the worst are correct. You may, if you are in the majority of cases, have pants & pads for a brief (didn't intend the pun) period.
When they pulled my catheter, the nurse said the majority of her patients did not leak, period. I messed up her stats, but then, I have that little cloud following me.
 
When I talk about one Depends and seven-eight pads a day - I used the Depends as a "last-ditch" backup. Some days I over did it, and filled a pad + some. Most days the Depends went in the trash almost dry. A few days (memorable, at best) were worse. By DaVinci +about 120 days, I was generally on pads only.
 
No one said you sit in your pee. You will probably want to change pads often (don't let the economy-minded folks convince you to wait until they are soggy - that promptes urinary tract infections), change whenever they are uncomfortable.
 
Can you work in an "adult diaper"? I did - it was work or lose my job and my insurance. No room for that choice when $166,000 worth of radiation was down the pipe a few weeks on.
If you have to, you will find slim-fit and kakhi pants to be avoided, but dark loose-fit pants work fine.
 
Prep for the worst - buy one pack, check them out for size, take them back if they don't fit (Walgreens was the best at dealing with that phase for me).
If you don't need them, donate the pack to a local assistance agency.
 
It is nothing pleasant, but I've had worse times in my life.
DaVinci 10/2009
My IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3743
   Posted 12/28/2010 9:46 PM (GMT -6)   
Viper,
A week after my catheter was removed I started wearing a pad inside my adult diaper. That worked very well. I could change pads quickly in a stall and still had the protection of the diaper. After a few weeks I noticed the diaper was always dry so I just started wearing just pads. Unfortunately, I am still wearing pads. I am one of the unlucky ones still leaking after a year.
Don't panic. Odds are you will be dry in 3 months.
Jeff

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 12/29/2010 6:27 PM (GMT -6)   
My Uro. didn't want me using anything like that, during our discussion stage, before surgery. His reasoning was you wouldn't be forcing your brain and muscles to adapt to it's new reality.
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RRP, Path: pT2c, 110 gms., all clear except:
Probable microscopic involvement of the left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09- Uh-Oh, next in Jan & Feb.
ED-total-Bimix 30cc

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7087
   Posted 12/29/2010 10:13 PM (GMT -6)   
I didn't have any discussions about extreme incontinence care until several months after surgery - I was still at 4+ pads per day and brought up "what's next" - got the same response as James. Now an AUS is on the official discussion list for the next Appt., but that is 18 months post DaVinci. My uro does not want to "fix" something until all other avenues have failed, and considers the setbacks from radiation to be possibly medium term. That may be wishful thinking, but ...
 
I agree that doing major surgery to implant something that has a limited mechanical lifespan only sets me up for another surgery down the line.
 
In any case, I deal with the few pads a day better than I could deal with all the hardware hanging off my leg and "other" leg. Being at 1-3 pads per day, it just doesn't seem a fair trade.

RHC Jr.
Regular Member


Date Joined Feb 2009
Total Posts : 39
   Posted 1/1/2011 8:25 PM (GMT -6)   
Gentlemen:
 
I am 2+ yrs. post-Da Vinci robotic surgery, and I am totally incontinent.
 
While an AUS may be in my future, today I remain fully opposed to its installation.  As per the comment of 142, above, for the moment I am opposed to a major surgery which, even if fully successful, only sets me up for a repeat surgery since it involves the implantation of a mechanical device with a limited lifespan. Besides, today I am physically able to cope with the diapers and condom catheter.
 
As to the observation of Knotreel, while I don't mean to be disrespectful to him, I note that I have used the AFEX device (suggested by Viperguy) for more than 1 yr.  I find it to be easy to use, comfortable, and cost-effective, and provides me with a good alternative to diapers (which I use at night because of my sleep habits).  It's cost-effective because the underpants are washable, and the collection bag is good for at least 30 days.  Plus, it's covered by Medicare and my supplemental ins. carrier.  With the AFEX condom catheter, I am able to do things that require more than 2-1/2 hrs. (the time at which my diapers would need to be changed), such as go out to dinner with friends and relatives, or go to the theater.  I can even play golf in the AFEX (although I must wear long pants -- I do wear diapers while playing tennis).  Wearing the AFEX, I even find it much easier to drive 12-1/2 hrs. from SW Florida to N.C. to visit my daughter and granddaughters.
 
For me, the best part is that the AFEX does not require any further surgery.
 
Sounds like a testimonial.  It's not supposed to be.  Its' just a description of my usage.  
 
RHC Jr.
 
 

kbota
Regular Member


Date Joined Aug 2010
Total Posts : 487
   Posted 1/1/2011 9:29 PM (GMT -6)   
Hello Viper; Welcome to HW.

As to your concern; It's not written anywhere that you will for sure be incontinent after surgery. I had an open prostatectomy in July, 2010, and the catheter was removed on Aug 5. I wore the pads for just a few days, and then started noticing that the pads I removed were dry 99% of the time. I continued with the Kegals, and within a few weeks, I was 99% dry. I had stocked up on pads from Sams club, and still have them all...and I'm sorry that I opened the package now, because I could easily have gotten by on the sample pack from the uro's office.

Just a few weeks ago, I was mixing 80 lb bags of sacrete here at home for a deck project, and I noticed that even lifting the heavy weight, along with a partly full bladder, I had no leakage. It's the rare occasion even now that I will feel a slight "leakage burn" (but no leakage) after clearing my throat, or coughing, or sneezing. I do feel very blessed in this regard.

I believe the skill of the surgeon plays a considerable role in this outcome, but there are other factors as well.

Either way, find yourself a good surgeon who has done hundreds of these (if not more) and ask him what his incontinent success rate is.

Take care, and keep us all posted.

We care.

k
Age 57 at Dx
5/09 PSA 2.26
6/2010 PSA 3.07 FPSA 18% DRE +
Biopsy, 7 of 18+, >60%, 4+5=9
7/21/2010 - RRP
Nodes neg, Ves neg
tumor contained, still 4+5=9
pni ext.
9/3, 2010 PSA - 0.04
9/3/2010, I'm 99% continent
10/14/10, PSA still 0.04, and lupron #1, now 99.9% continent
Total ED, 3 caverject failed
10/20/10 OD'd .5cc trimix, after 3hrs, neo synephrine shot
tried .15 & .17 cc neg, next .2
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