www.incontinentsupport.org

Support for dealing with incontinence
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PostPosted: Fri Oct 28, 2016 7:11 pm 
Hi, I just found this place and sure wish I would have a long time ago. I've been using folly catheters 24/7 for the past year and feel great about it.

Let me tell you how I got here: I'm 58 and starting about ten years ago I started to get up more and more at night to use the bathroom. About 5 years ago it started to happen about every hour to hour and a half and it was getting frustrating not to get any sleep.

About four years ago I started to have a little bit of leaking when I'd feel the urge. I'd bare down to stop and it was ok but then on the next urge there may have been some in the urethra and it would come out. Now I've got a little dampness and so I started to used disposable belted shields and store brand disposable underwear for men. Expense is a concern. So now I'm ok in this area except I still have to get up every hour to go pee.

I looked into medication and that was just not for me. I'm not going to dehydrate myself and cause other problems I don't want. I thought that catheters might do the trick and so I looked into using them. I gotta' tell ya', Dr.'s, nurses, and medical personnel have got to be some of the most incompetent people I have ever come across on this issue. They all seem to have forgotten that the human body has a central nervous system that detects irritation and pain when inflicted on the individual. Inserting a catheter is not like snaking out the kitchen drain.

So after researching things on the net I made the decision to try it for myself. I started with a 16fr and a 5cc balloon. I went up to an 18fr but it was still uncomfortable. I tried the 30cc balloon and found what worked for me. When I first inserted the first catheter I made sure it was very well lubed up and the environment was clean. I took it nice and slow and could feel every bit of it as it progressed. No wonder why so many scream in pain the way they try to shove it in you just because they're in a hurry. Slow is the key even if you use a lube with lidocaine. It doesn't go past the sphincter muscles and into the prostate where things are very sensitive. Gee wiz, take your time it's my body you're working with here.

I was using a leg bag and never felt so uncomfortable with something like that before. The pinching, the sagging, the trying to hide it, etc . . . . This is so old school it isn't funny. Then I came across the Belly Bag and read up on that and the amount of pressure in the stream it takes and all that. I got one, tried it for a week and NEVER went back to a leg bag. I was feeling great!

Eventually over time I worked myself up to a 26fr that I have in now. I use a belly bag and store brand disposable underwear. It catches the little tiny leaks around the catheter, keeps me clean in back so clothes don't get dirty, and the wide waist band keeps the bag nicely tucked against my body at night so I can sleep without interruption. Finally I'm sleeping 4-9 hours without having to get up to use the bathroom so often.

Oh, and as for the pinching at the tip of the penis due to normal extension and retraction of the penis, use some Neosporine. Apply some on the tip and the catheter, hold the catheter tube and move the head of the penis up and down and inch so some of the neo gets inside the head. I think someone here said that if it gets to the balloon, the balloon will pop. Are you serious? How much of this did you use? It's not a lube for insertion but a lube to stop irritation.

I hope this helps anyone who might be considering going with a foley. No, I didn't see a doctor. From all the research I did I found it wasn't necessary for me. Do what you feels right for you. It's right for me and I'm not going back. If you have any questions, please feel free to ask. Have a great "Incon" day.


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PostPosted: Fri Oct 28, 2016 8:44 pm 
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Joined: Wed Aug 19, 2015 11:49 am
Posts: 890
Location: Jacksonville Fl
This closely resembles my own experience. I too had/have urge incontinence, and would get them even with very little in my bladder. For me the pain was too great to try and hold it so I always did what I could to just empty my bladder into my diaper. Though I also have had detrusor sphincter dyssynergia so I could just let go to pee, I always had to strain really had instead. I did get a recommendation from a urologist to try using indwelling type folley catheters. Though beyond the first few samples he was not willing to help me pursue this route either. I was on my own for buying them as well, not even so much as a prescription.

At first I only used them for about a week, once every month or two. After that recommendation I started using them 24/7 as well. I too quickly found I did not like the leg bag though, which was always uncomfortable even when empty but much worse when even half full. Instead of a belly bad I decided to try and just let the catheter drain into my diaper. Back then I didn't even know to also use a one way valve to keep the system closed, though I did stay clean with them and never once got an infection.

On the bad side though, I did develop a severe sensitivity to having anything in my urethra. This happened just seven month of using folley catheters 24/7 (and always changing them out every week). After doing a little digging on the net I found this is not all that uncommon for people who use folleys 24/7. It's kind of like rolling the dice, eventually you're going to come up snake eyes and loose. The longer you go with using them, the bigger your chances of this happening. And it happens to most everyone eventually.

Well, after that I went back to straining to pee again. Fast forward a few more years, and a few more incompetent urologists, and I started developing painful haemorrhoids and a bleeding anal fissure from all that pressure. I finally managed to get one urologist to start taking more "drastic" measures with me by using botox, then interstim. One last urologist and I started undergoing urinary sphincterotomies to finally open me up down there. Just as I use to have with a folley catheter in place. (though I'm still not quite there yet).


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PostPosted: Sat Oct 29, 2016 4:09 am 
Sorry but I don't see the remote resemblance to our posts. Mine is a sleeping issue and yours is having pain. I would never openly drain from my catheter into diaper when this is a leading cause of UTI's for those who use Foley's.


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PostPosted: Sat Oct 29, 2016 8:07 am 
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Joined: Wed Aug 19, 2015 11:49 am
Posts: 890
Location: Jacksonville Fl
The resemblance is that we both sought out to use folley catheters on our own to alleviate our troubles. A very close similarity too.

And it's actually just catheters in general being the leading cause of uti's. Even just a little research will prove this is most commonly from inserting the catheter, not from just having it in, and not from the type of collection method used. A little more research will also prove the majority of those uti's also happen in hospitals or clinics where infections "naturally" run rampant.

Inserting a catheter at home by your self, and simply keeping the catheter and insertion clean, has a dramatically reduced risk of getting that infection. This is already widely recognized by the medical community. Of course, I do also recognize that risk is always there regardless of the situation applied. Just as I also recognize some people are naturally and very highly susceptible to getting infections, while the majority of the population is not.

Still, seven months is long enough to also show that risk of infection is completely overblown. It just comes form some med school doctors being told it's a bad risk, and they tell their patients. All as a blanket statement without actual data to back it up. And that just leads to everyone else falling for it too. I can't blame the docs for being taught this though. Instill enough fear in the population and they won't attempt the risk even if that fear is unfounded.


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PostPosted: Sat Oct 29, 2016 9:48 am 
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Joined: Sun Apr 06, 2014 2:50 pm
Posts: 687
Location: Oklahoma
BB,

Welcome to the group. I have learned so much from this group and have received a lot of support. Glad to hear you have figured out a way to manage your issues. What works for one doesn't work for the other and this forum definitely proves that.


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PostPosted: Sat Oct 29, 2016 10:07 am 
Thanks batman381327 I appreciate it. Just because we use catheters it doesn't mean our posts themselves resemble each other. I'm not sure B Brian understands where I'm coming from.


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PostPosted: Sat Oct 29, 2016 10:10 am 
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Joined: Wed Aug 19, 2015 11:49 am
Posts: 890
Location: Jacksonville Fl
Absolutely, and I do agree that long term 24/7 catheterization is a good and very valid method for dealing with certain types of incontinence issues.

I'm curious though, do you mind if I ask how many uti's have you gotten in this past year?


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PostPosted: Sat Oct 29, 2016 8:27 pm 
ZERO!


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PostPosted: Sun Oct 30, 2016 5:31 am 
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Joined: Sun Nov 14, 2010 1:05 am
Posts: 750
Location: "Wet Coast" B.C., Canada
Welcome to the group... glad you have found something that works, but WHY would you need a 26FR in size? Working in the medical field, I rarely see anything used bigger then a 24FR , and that is a 3 way used for bladder irrigation post prostate surgery and only inserted once you are put under anesthesia.. The other concern I have is using a foley for urinary issues without consulting with your doctor or Urologist first is just plain risky! To each his own, I guess. Puffy

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BC, Canada
Fighting the "Bladder Battle" since 1995


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PostPosted: Sun Oct 30, 2016 6:33 am 
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Joined: Mon Feb 14, 2011 9:57 am
Posts: 189
Location: UK
I'm glad you've found something that helps you although I also wondered about the size. Is there any reason you needed to keep increasing it? That's a very big catheter. My changes are every 10 weeks.


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