www.incontinentsupport.org

I don’t know if I posted this in the right area, if I didn’t please feel free to move it where it should go. I haven’t been very active on here lately and I apologize for that. I have been letting work, health issues, and everything else take my time. This board has been very supported and helpful so I thought I would give an update as to how I have been dealing with my incontinence.

My diapers have been working pretty good in giving me enough confidence, allowing me to still work, go out, be around others and live my life as normal as those without diapers. I had started going back to monthly meeting at the prison I volunteer at, going to my Saturday morning men’s accountability group, and started back helping others. Earlier this year during one of the prison visits, I had carried in two extra diapers with me in my bag. When security opened my bag and took out both of my purple diapers to inspect, I was about to die. Before they would just look in the bag, and check them out without taking them out but this time a different officer was there and did his job just like he was suppose to. That was the turning point for me. I didn’t die so I started to live life again. Everything was going o.k. until I started going through 4-5 Dry 24/7 diapers a day instead of my normal 3 and still self cathing 3-5 times a day. After my follow-up visits with my urologist I broke down and asked if I could use a Foley for a while. He had no problem with that. 6 weeks after having it put in, I went into his office for a checkup and I was given the choice of having it changed out or taken out. This was somewhat hard choice. The catheter wasn’t that bad until about week 3, I started having some really bad bladder spasms. To help control them, he put me on some meds. The meds helped and thank God for that. I have a small understanding how bad it might hurt to give birth or pass kidney stones. I decided to have it changed out. The deciding factor was that I was going to be spending straight days at the prison working a Kairos Prison Ministry program. I didn’t want to have to carry in enough diapers each day and have to go through the terror of them checking them each day. The catheter and leg bag made those 4 days a lot easier to handle. In fact I just got back from this late Sunday night. It was a little embarrassing when the officer would pat me down and then would ask what that is on my leg. Prior to attending, I had contacted the prison Volunteer Coordinator and the gentleman over the officers to make sure I wouldn’t have a problem getting in. (It was a great God filled week-end)

Today I had a really bad scare. I was sitting at work; the smell of urine was getting stronger and stronger. Then I uncrossed my feet, and could feel my ankles were wet. I looked down and felt of my pants at the cuff. They were soaked; there was a puddle on the floor at my feet. I thought the valve came open so I checked it real quick, no it was closed. That had to mean one thing; my leg bag had a hole in it. I quickly wiped up the puddle and left work to go home. Thank God, I had a second bag at home. I cleaned up, changed and put on the other leg bag and went back to work.

Tomorrow I have a follow-up with the urologist again. I don’t know if I am going to stay with a catheter or return back to my diapers. I have enjoyed saving money by not having to buy diapers, but I don’t know if that is enough reason to keep one in. It has given me a little more freedom in some areas but again not enough areas. This weekend I got very little sleep because I made sure I got up before everyone in order to sneak my night bag into the bathroom to empty it. If I had my diapers on, I could have changed in my room and not worried about it. I have this part, what to do or not to do. We are all different and manage our incontinence the best way we can. As one of you have said before, what quality of life am I willing to live with.

Sorry this is long. I don’t really have anyone that I can talk with personally about my feeling and dealings with my incontinence.

I never tried a cath. The doctors suggested it to me many times, but after being poked and prodded and filled up with fluids during the urodynamics testing I said enough of that... no thanks. Personally I'll stick with the diapers.

You are seriously using 4-5 Dry 24/7s a day? I would be asking the doctor what is wrong... because that seems like an awfully large amount of urine to me. Drys are designed so you should only need 3 within a 24 hour period.

No offense, but either your body is producing a load of extra urine or you are changing the Drys before they get full. I have been using Bambinos over the past month or so... and I typically use 3 a day... but there have been several times that I have been able to get by using just two.

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~~PuddleGuy

I am a penny pincher. I try as hard as possible not to change my diaper until the very last moment. Normally I can get my diapers to last 10 to 12 hours but when I started using more than 3 a day, I was concerned. I told my urologist that I was going through that many but he wasn't concerned about the extra output. He didn't show any concern about it. He is just wanting me to go see another urologist specialist in Vanderbilt to have a different type of video study done on my bladder. He said that the doctor in Vanderbilt was one of only about 10 or so in the USA that does it. Some how it is different than the normal one most Urologist perform. When I talked to the nurse about the possibilities of using a Foley, she told me that normally this doctor doesn't let his patients use them. She was surprised that he said yes to the Foley for me. So I guess that using a Foley is his way of showing concern about the extra fluid output.

K.T.,

It goes without saying,.......everyone needs to do what they feel works best for them. I don't know that there really is a right, or wrong way of being incontinent. It always seems to come down to one thing........What works best for you and offers the highest quality of life.

John

KT.. Do what you need to do to manage..

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"We cannot do great things. We can only do small things with great love" Mother Teresa

"THERE ARE FOUR LIGHTS!" - Captain Picard from Chain of Command, Part II

Quality of Life. Why is it such a roller coaster?
Why can’t others accept the quality of life that a person is able to deal with?

This year has been a rough roller coaster for me dealing with my incontinence. In the Medical Test area, I posted about a test I went through.
It could almost go here because it is part of how I am trying to deal with my incontinence. So that you understand where I am and why I gave in, I will try to post that here.

My urologist was seeing me about every 3 to 4 months last year and some of this year. Earlier this year, I was starting to go through 4 to 5 Dry 24/7 diapers in a 24hr period along with self cathing in-between diaper changes. I can’t count how many UTI’s I have had because the doctor would just tell me to drink more to keep it moving. When I get UTI’s I don’t get the burning or pain that most get because I don’t have much feelings down there. I know when I have one because of the smell and color of my urine.

At one of my visits about 3 to 4 months ago, I gave up. I asked if I could use a Foley and leg bag so I could have some relief from my diapers and self cathing. Where I work makes it very hard to self cath cleanly. I know this isn’t for most, but since my bladder has no feelings any more, it didn’t hurt me. My wife was happy that I didn’t have to wear full diapers during this time, just used some Depend Pads to keep my underwear dry because I would still leak around the Foley. Using a Foley was a little different but it did let me sleep through the night and the amount of money I saved from not buying diapers was nice. It was easier doing my prison ministries too because I didn’t have to carry diapers into the prison and have the officers pull them out, open them wide and show them to all around. The Administrator or warden and his assistant told me not to worry that they would make it possible for me to come in with little to no problems.

Now I told my urologist that I don’t want to stay this way all the time but just needed a break. During all this, I haven’t had anyone close that I could talk to about my incontinence. My wife has said that after working 14+ years in a Rehab hospital that she wasn’t wanting to deal with anything like this at home. Mind you I don’t ask her for anything. I do my best to keep all my supplies put away and not expose any part of my diaper at home around her. I personally feel that the Botox injections that I am going to have done is the doctors way of trying to keep adults from wearing diapers.

Thanks all for listening.

K.T. :

"Now I told my urologist that I don’t want to stay this way all the time but just needed a break. During all this, I haven’t had anyone close that I could talk to about my incontinence. My wife has said that after working 14+ years in a Rehab hospital that she wasn’t wanting to deal with anything like this at home. Mind you I don’t ask her for anything. I do my best to keep all my supplies put away and not expose any part of my diaper at home around her. I personally feel that the Botox injections that I am going to have done is the doctors way of trying to keep adults from wearing diapers. "

Well, I am having trouble with the quote feature so I will just use the dark red to indicate a quote. K.T., I can totally relate not being able to talk to someone else openly, just to get out your feelings and bump off ideas on another person. Incontinence is a silent problem and it's an embarrassing, unseen disability, certainly not easy to talk about!

I ran into the same problem but in the end, before I had surgery to correct it (plus a leg bag and catheter for a week afterwards) I was able to talk a bit with my mother about it because she was dealing with heavy incontinence herself. When we both discovered we were in the same boat, we were able to laugh with each other about our previous wetting accidents when of course we couldn't when they actually happened.

Perhaps if you go through your mental rundown of friends, you might have someone you can confide in. There are some people, who in spite of having no idea of the 'weight' and life adjustment incontinence causes, can lend a buddy's ear to you and help you. Many can't, but then again many can, you just have to find them. For me, it happened to be my mother of all people and it helped to repair a bit of our fractured relationship in the process.

Another thing, have you asked your urologist about any local incontinence support groups that meet once a week for moral support and to keep up with the lastest in lifestyle helps and suggestions? Usually these type of support groups are free and meet in local hospitals. Ask your urologist, because while your incontinence may be new to you and you feel like you are the only one in the world to be dealing with this problem, he/she sees many, many patients who are dealing with the same thing and probably can recommend a good local support group to help you.

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"Cats' whiskers are so sensitive, they can find their way through the narrowest cracks of a broken heart"

Update on how things are going. Just about 2 weeks ago, I went in and let my urologist do Botox injection into my bladder. This procedure isn’t for everyone or every type of incontinence but they felt I would benefit from it even though I was at a point of life being able to deal with using and managing diapers. To please my wife and Dr.’s I bit the bullet to see if it would help.

I am surprised at the outcome so far. These past two weeks it has felt great to wash my hands or the dishes and nothing else gets wet. I haven’t had the open the front door and can’t hold back, haven’t woke up in the middle of the night worrying if I am going to leak, and not had to think about where am I going to change at. Instead of changing my diaper 4 to 5 times a day, I self catheterize 3 to 4.

The biggest thing I have to work on now or figure out is if this is really worth it. Not only is the Quality of Life I live important to me, so is the financial part of it. Will my cost of this procedure and catheters be less than using diapers? Can I continue living using catheters all the time? How long will one treatment last? These are just some of the things I am battling with now.

But the biggest thing on my mind is, when this wears off what will happen? I am scared that I will end up out somewhere or at work and then out of the blue I am back to square one, and embarrassed like Jane was when she had a bad leak. One thing I am doing to try and help my mind with this is, I wear one of the Depend pads with Velcro straps every day and still carry my diaper bag with catheters and diapers in it.

To answer some of Piddlefree questions: sorry it took me so long to answer;
The way my urologist acts, I don’t think he really cares about local incontinence support groups. To me he is just the type that tries to find a cause and fix the cause. However I deal with it, is up to me with no support from him.


Thanks for letting me share and have a safe place to open up at. I pray daily for all here that have been a huge support!