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Posted 3/23/2011 11:35 PM (GMT 0)
Hi fellow incontinence sufferers,

I am 17 months post op. (Prostatectomy)
No improvement with incontinence. I will eventually have a AUS installed but for now I am ready to try a condom catheter as I am fed up with large pads. Advice as to which catheter would be best would be appreciated???
The nurse at the URO office today fitted me with a latex (Unidrain) catheter. It sure felt great to be padless, but the dam thing fell of 3 hours later.
So I guess I can forget the latex catheter with an a sponge tape holding it on.

Suggestions from experienced wearers will be much appreciated?

Thanks,
Bob
Posted 3/24/2011 2:44 AM (GMT 0)
Bob,
The condom cath did not work for me. I did not have enough "material" for it to attach to and it fell off almost immediately. Also it was much more expensive per day than pads.

Do you know how much you leak? Do you have any residual control? - Can you hold it for 15 seconds? Are you dry at night? If yes then you might be able to get by with a sling. Just a thought.

Jeff
Posted 3/24/2011 3:31 AM (GMT 0)
Bob, I too got fed up with pads and went to the Condom cath and leg bag. I got an AUS at 13 months , about 2 months ago.
I liked the condom cath as far as comfort and it was easier to get thru the day than pads for me. I tried a lot of different styles and my favorite was the Hollister Extended Wear attached with 18" extension tube and leg bag. I would recomend the hollister 18oz leg bag with the fabric straps. Later you can order some of the same bags without the straps as they double the cost. The reason I like the Hollister cath is that it was not prone to kinking and has fairly good adhesive and was comfortable. This is a latex unit so if you have allergy don't get it.
If you are active and especially if you sweat all the catheters I tried will start to become unbonded and where prone to leak in the afternoon. So, I used a product called Skin Tack to incease the bond and still be fairly easy to remove the cath at night. about removing, if you get one that is stuck too good, you should get a bottle of adheasive remover to help with that. And finally, I found the catheter and bag setup to work better with a catheter holder located on my mid thigh. I used a small tab type that sticks to you rather than the type that wraps around your leg. Bear in mind a lot of this type of stuff appears to be made more for someone who is bed ridden or wheel chair confined so that it took me some trial and error to get a something that worked for me.
I did almost all my shopping at Allegro Medical where you can order this stuff online and I found their service good and prices resonable.
If decide to go this route you can email me or send a PM and I can give you some more help. Too get all this stuff right on the first try could be a little difficult.
Anyway sorry to hear you are still leaking, pads for 17 months! Jeff,Worried Guy, got the sling and I got the AUS more or less at the same time. And a lot of others here on this this site preceeded us in our choices. You will find this a good place to get some suport for wahtever way you go.
And best of all, I have some good leg bag stories of "don't's" you might end up with the dreaded "piss foot (or shoe actually) ", you just can't get that smell out.
Ron
Posted 3/27/2011 10:15 PM (GMT 0)
I also got the AUS intstalled last year. I wore a condum cath and leg bag for two years while I was getting other issues resolved.
I can tell you some daily hints in how to make it work. I wore a Freedom 35 mm cath. I usually put it on in the morning after my shower where I could wash well, dry my self and then sit down on a stool over a lined trash can to put it on.
I tried (believe it or now but this worked I found out over time) to make sure some pubic hair got caught up in the cath as it would help hold it on much longer. I used normally overtime, one a day.
The length of the extention tube (use latex as it is more plyable) is very important as if it is too long, gets kinked up, too short, pulls off the cath, is something I experimented with, so when I moved around daily, it posed no problems. When I changed tubes, I would size it up just like the old one.
You then taped the extention tube to the inner calf of you leg. Shave it, then the tape (I got a tape from Walgreens, Waterproof tape, brown color. worked the best. Only retaped several times a week but put on a new cath daily for the most part, sometime everyother day) and the tube must also be taped just right every time for the same reason. I wore my 24/7 because I leaked all the time and could only go for two hours at night before my neo-bladder (I had bladder cancer) would over spill. I used a larger night bag so I could if I wanted to sleep all night. I usually did void every several hours at night because the cath could leak at night since you are laying in a flat position, but many times I overslept and my cath did work good enough. Better to be dry than wet. I also layed on a bed pad. I needed it many times.
If you sleep on the right side of the bed, you tape the extention tube to your right leg so the bag on the floor is closer to your leg. I was able to sleep on my side either position as I learned over time how to do that.

I also wore Depends and a large mans pad just in case. Carried supplies in my car, brief case and had some in my office. Never knew when you might need them.

Hope some of this helps you. By the way, the AUS is..... well...just fantastic. Esp. when you are totally incontinant like I am. No more bed pads, I wear shorts, I am back to running in the morning, hope to do a half marathon this next winter.

Let us know how you are doing.

Neo
Posted 3/27/2011 11:35 PM (GMT 0)

My husband who is spinal cord injured and has had other urinary issues prior to the prostate cancer surgery, uses the Bioderm Liberty external catheters.   These are the catheters that the astronauts use...or so they say!!!!    He has had better luck with these than a condom catheter.   They just fit on the end of the penis, hence no skin breakdown.  They are quite expensive....a three month supply will cost a bit more than  $2,000.  I sort of forget the exact cost.    Medicare has covered those costs.  You can google them and get the particulars.   They sent some free samples to see how he liked them when we were first researching them.  

Posted 3/28/2011 1:56 PM (GMT 0)
By the way, I used a Bard Medium leg bag. Large was way to large... I like the Bard because if I took off the cap on the end. it drained in seconds flat. I could drain on the fly in a patch of grass by my car or almost any where undectected. Did not have to stop by a bathroom!! yeah

NEO

Posted 3/28/2011 11:33 PM (GMT 0)
Thanks for the ideas folks,

I will follow up.
I wont be getting an AUS til August so this may give some relief from pads.

Again thanks,
Bob
Posted 3/31/2012 10:44 PM (GMT 0)
Been reading here.  What is an AUS?

I have been using absorbent pads.  But they fill up!

I have been trying condom catheters.  I find them hard to put on.  I evidently have a fat but short penis.  I just tried a Rochester "Pop-On" 41 mm.  I am afraid it will fall off.  I still have on a pad though I have a leg bag.

I'd appreciate some advice please!

Gerry

Posted 4/1/2012 2:21 AM (GMT 0)
Hi Bob and Gerry,
After my catheter was removed I suffered severe incontinence for more than 15 months. I was using 12 to 14 super absorbent pads per day. Somewhere on this forum I learned about the Afex Incontinence System. I tried it and I liked it. It served me well for about a year. Somehow I managed to regain full continence and put the System away.

I don't remember the Internet link I used to find it, but I'm sure you can do a google search and find it if it strikes your interest.

Best of luck to both of you,
Bob
Posted 4/1/2012 3:29 AM (GMT 0)
GKMCA, AUS is short for Artificial Urinary Sphincter. You can google it for more details but briefly it a cuff placed around your urethra, and a pump is placed in your scrotum and a fluid resevoiur in your your abdomen. The cuff when filled with fluid acts something like a natural sphincter. You manually operate it with the pump. After awhile, say a year, of incontenence thing like this begin to look good.
Mine works good, no more pads or leg bags.
Posted 4/7/2012 8:18 PM (GMT 0)
Thanks to those who responded to my questions on "condom catheters".

I have a problem getting one in place. I am not circumcised. When trying to get one in place, I do not have a stiff erection. Should I pull the scrotum skin forward and try to get the condom catheter around the scrotum skin? I have tried that with little or no success. Helpful suggestions appreciated!

G
Posted 4/7/2012 10:26 PM (GMT 0)
In my previous post, Italked about pulling the scrotum skin forward - I meant the foreskin of course.

Should I try to stuff it into the condom catheter? Is that how it is done?

I succeeded once with the help of my wife. But I don't want to ask her for help first thing every morning.

Any helpful advice? I'd sure appreciate it.

G
Posted 5/1/2012 3:09 PM (GMT 0)
about incontinence etc:  Thanks to those who replied.

Latest:  I got the AFEX system, and it seemed to work well the first day.  Now it doesn't.  Looks like my soft penis moves in such a way that I leak to one side or the other.  What the heck can I do about that, I wonder?

I have difficulty with condom catheters. How to put on, how to make one stay in place.

 How can I make either work I wonder?  Pads are the best I have found, but I may have to change a few times a day.

GKM

Posted 5/4/2012 11:11 AM (GMT 0)
GKM.

Refer to my post at the beginning of this thread, about getting some Pubic hair caught into the condum cath. It helps in getting in held on better, I also trimmed down my hair in that area to help keeping clean.
I put in on after my am shower to that it had a clean surface.

I cannot remember if I pulled the foreskin back or forward...but I did do one or the other.. trial & error.. you are correct to do one or the other.. that was important..

Also, it was very important to get the tube to the leg bag measured excatly and taped to your inner thigh (shave that area) I used a waterproof tape I found at Walgreens to tape the tube in. If not done right , the tube will pull the condum cath off.

And I used a large bag at night I laid on the floor. But tried to get up and void before I started to leak every several hours..Used the condom cath only as a fail safe during the night.

Now I have the AUS and am very happy with that.

Any other questions. ask me.

NEO
Posted 5/6/2012 3:07 PM (GMT 0)
NEO:  Thanks for info.  I may have asked before - if so forgive me for asking again - but what is "AUS"?

As I said, I have difficulty installing condom catheters, and they tend to fall off even if I do succeed in getting one on.

An alternative that works is to use the AFEX system.  There is a special pair of brirfs that one pulls up to the waist.  In front is a specially designed hole holding what is called a "receptor" into which the penis is inserted.  Urine then goes to a connected bag on one's thigh.  That may be strapped there or not.

One may drain the bag into a toilet any time.  Just put down one's pants and let the bag leak through a small exit tube.

This system has worked perfectly all day for me on many days.  But sometimes it fails.  My floppy penis may leak to the side.  If I know I am going to pee, I can hold the receptor from in front of my pants, trying to keep the penis inserted into the receptor.  But one does not want to do that in public.  I am still experimenting with the system.

GKM

Posted 5/6/2012 7:27 PM (GMT 0)
AUS is a "Artificial Urinary Sphinter) implant. Read precious comments. I used a Freedom 35mm condom, tube extender, leg bag. Thigh bag did not drain well enough. Contact me via email under my neoman info if you want better information advice. We can talk on the phone.
Posted 5/13/2012 2:15 AM (GMT 0)
After experimenting with condom catheters, I also ordered the AFEX system. It is available at Elderstore.com

I am 6 months post open prostate surgery and usually get through a day with 2 pads as long as a restroom is available.
When restroom opportunities are far apart, I wear the AFEX. Using the low receptacle, it is reasonable comfortable while driving and I can even ride my motorcycle with it. My penis is definitely shorter after the surgery, but still meets the
recommended 1" size requirement for using the system. I just keep the shorts pulled as high as I comfortably can to reduce the chance of "fallout."

Post Edited (Oldgreydude) : 5/12/2012 8:18:42 PM (GMT-6)

Posted 5/18/2012 6:38 AM (GMT 0)
I too got the AFEX system - I actually purchased three of them, all with the bigger style "Receptor".  I was afraid the smaller style receptor would be less satisfactory because my penis might flop out of it, so I have never tried one of those.

Even with the bigger one, however, my penis has frequently flopped out and this resulted in wetting the underpants part of the system.

I got what seems to work better with the receptor.  The input is round, of about one and five eights inch diameter.  I found a plastic spray bottle of this diameter and about 6 inches height.  I sliced a lenght of about 2 to 3 inches (If asked, I could measure what I have been using) and poked this into the entrance to the receptor.  It was a trifle too big, so I made a cut in it about 1 inch long so I could squeeze it smaller where it pokes into the receptor.

I am not sure I have made myself clear.  Ask if you like.

This has worked very well for me.  If I know some urine is coming out - it can happen - I stand up, or lean forward.  The idea is to be sure the urine flows by gravity DOWNwards, and not BACKwards into the underpants.

I hope this suggestion may help someone here, and would appreciate suggestions for anything better.

GER

Posted 5/20/2012 12:38 PM (GMT 0)
Back to the condom caths, I had almost 100 % dryness with them. I learned how to manipulate them during the day and night where I rarely had a leak issue.

Now my profession is walking a 130,000 sq ft showroom floor, lifting furiture (in a suit mind you), talking to clients on the showroom floor. In a moment notice walking from one end of the floor to another quickly to solve an issue. Drive 6 hours in a car to visit my daughters in college, stopping only once for fuel and to drain my leg bag.

What I had to give up was jogging/swiming, wearing shorts.

But only I knew what was strapped to my leg and inside my pants. When I went into a restroom, I put my foot on the stool and lifted my pant leg and drained the bag.. took barely a second to do so.. It was that easy for me.

I took time each morning to properly put the cath on, sometimes I got two days on it. the extention tube tapped to my inner thigh I retaped once a week or so. The leg bag I put some mild bleach/water solution in it each night to keep it smelling good.

I hooked up to the larger night bag each night and laid it on the floor. Was able to figure out how to lay on either side during the night to allow downward drainage into the bag so the urine had a place to flow. If it had to go upward at all, it would push the condom cath off the penis.

I usually got up every two hours to void at night, not wanting to depend on the drainage into the bag. Just used the night bag as a fail safe, but once in a while I slept all night and the bag was full. But I was dry.

I wore Depends and a large man pad, for safety, and had a pad on my bed just in case. sometimes I needed them. The Depends kept the condom cath in place so it stayed put in one position.

Just wanted to post that incase if this helped anyone.

NEO
Posted 6/17/2012 4:42 PM (GMT 0)
I already here told how I found condom catheters unsatisfactory because I could not get one on satifactorily.  Eventually I tried the AFEX system.  It worked well except that my penis would flop out of the receptor and consequently wet me.  I solved that problem by making a cylindrical tube of plastic about 2 inches in length and about one and five eight inches in diameter.  I forced this into the "receptor" and glued it in place with "the strongest glue in the world".

My penis sticks into it, and I can make sure it does by feeling through my pants.  This now works well with me.  During a recent 2 week trip to Europe it didn't fail me once.  I drain the bag from time to time at a toilet with a door.

This is with the larger AFEX receptor.  AFEX should make such a system available!

Ger

Posted 12/2/2012 11:01 AM (GMT 0)
The Afex system is not available in South Africa but I am sure I could order it anyway,

GKMCA or anyone would you please tell me if this system is suitable for using at night when sleeping as in my case that is the time I am Incontinent. I now use a Nappie type of thing which works somehow.

Thank you

Klaus
Posted 12/3/2012 7:57 AM (GMT 0)
Klaus:  I have not used the AFEX system at night in bed, but I believe I have read that this is entirely possible by using a long connecting tube and a big bag.  I am sure the AFEX people on the internet will be able to advise you about it.

I use it during the day with a leg bag, the bigger of the two.  However, with the normal plastic collection thing, installed within the underpants thing, my penis would flop out resulting in wetting the underpants.  I solved this by installing a plastic tube about 1 1/8 inches in diameter, and about 2 inches long on to the normal plastic collection thing.  I stuff my penis into this when putting on the AFEX underpants.

I am surprised AFEX does not make such a thing, or have it permanently installed in a collection thing.  I used a pill box of the right size, and glued it in place with "the strongest glue in the world", if you know what I mean.  Ask again if you think I could help.

GKMCA

Posted 12/3/2012 8:15 AM (GMT 0)
In a previous post, I said I used a tube 1 1/8 inches in diameter and about 2 inches long to extend the AFEX receptor.  I should have said 1 5/8 inches in diameter.  I guess one might have to experiment for a size that is suitable for one's own particular "equipment". 

I found normal external condom catheters impossible to install.  Without an erection even the biggest was unsuitable.  The AFEX thing does work for me, but even with that there could be a danger of leakage when sitting down.  The urine can flow backwards. If anyone her has better ideas for using an AFEX receptor, I'd appreciate hearing about them.

GKMCA

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