www.incontinentsupport.org

Hi everyone,

I didn't see an introduction section so I'll start here.

I'm Mike, I'm a 27 year old Marine Corps Combat Veteran with a 100% Service Connection for PTSD and a back injury.

I suffer from urinary incontinence of which the cause has not been determined. When I was in the Marine Corps, in between deployments I played for our Battalions football team, and was speared in the back with a helmet a few months before I got out. I had an MRI and/or CTscan (might have been both, I can't remember) which came back negative, but every now and then my back really bothers me.

My PTSD really kicked up in at the end of 2011 while I was working. I ended up being terminated (for reasons that were never make clear to me) at the end of that year, for reasons I speculate had to do with the symptoms of my PTSD, but if this was the case my company probably didn't want to say that flat out due to fear of a lawsuit.

I was having really bad flashbacks and anxiety, so I went back to the VA for help. They put me on a myriad of drugs, including 3 different anti-psychotics. It was then when the incontinence started, I was so drugged up it's kind of a blur to remember how things progressed but I remember that it gradually got worse over time.

After I was fired from my job and started dealing with my PTSD (instead of shoving it aside with my last job) and incontinence, I laid low, and didn't leave the house much. I saw the urologist at the VA but he wasn't very helpful, so I didn't see him again.

My PTSD wasn't getting better, and in my drugged up state I decided to tell the VA, since drugs and therapy weren't working, that I wanted to get off of the drugs so I could think clearer. They had a little reservation, but agreed. Things got much better over the year. I am on no psych meds other than ritalin (I was diagnosed with ADD as a kid and it progressed into adulthood) which I only take if I am working

I starting seeing a (different) urologist who's been more helpful. She prescribed the god awful kendall wings at first, which were extremely leaky and crinkly. I thought there had to be something better out there, so I looked around on the internet and found another user who had asked a similar question, and johnstone from this board responded to them. I talked to johnstone who encouraged me to post on this board. My urologist is now prescribing me a better brief, she stated that she had to prescribe the kendall wings first, and can only prescribe a better product if the first one doesn't work.

Now that my head was clearer, I applied for a job, knowing that I would lose my 100% service connection when I would come back up for review. I got a job as an network engineer, but now I have to deal with the fallout of my PTSD and incontinence

Now for the rant.....

Before I start, I would like to throw out that I consider myself a pretty active person physically, and I am not bowel incontinent either. For these reasons I was kind of hesitant making this post, since I realize that many people on this forum have a spinal cord injury and double incontinence. I really mean it when I say that I have nothing but the utmost respect for you guys, and I hope by me complaining that I am not "rubbing salt into the wound"

It is hard working in an office. People come up behind me all of the time and startle the crap out of me....major trigger. I'm working in the middle of the office, when I prefer to have my back to a wall.....major trigger....I feel like I'm starting to have the symptoms I had at my last job.

And o yea, how about that other issue? Working 9-6 with a one hour commute each way, there is no way I can make a "brief" last 11-12 hours, especially considering I pee a lot more than the average person. And even if a brief could last that long, I wouldn't want to subject my skin to my urine for that long. So a change is inevitable.

Lets me digress for a second. Diaper, brief. I've seen previous discussions about this and I'm not going to try to bring up the same point. The reason I don't like the word diaper is because I feel like it is more permanent. Like once you use diapers, you are stuck and will always use diapers to manage your incontinence. To the contrary, brief. When I think of the word brief, I think of temporary. Even the word brief means short or quick, as in "I'll be brief" Wearing a brief means that you might have incontinence once in a while. Maybe this is just the result as the word "brief" not being around nearly as long as the word "diaper" to mean the item worn to manage incontinence. When I hear my doctor call them a diaper, I just makes me feel like I'll be stuck this way forever. I guess it is just a tough pill for me to swallow though.

Working in an office with 30-40 males a day on average is tough. When I need to change, I take my backpack to the break room, I take a brief out of my bag, wedge it in my armpit under my shirt and go into the bathroom. I've only been at this job a few weeks, but the other day, right after I went into the handicapped stall, and undid half the tapes, people started coming in left and right. I quietly moved over to the toilet to wait until they left. And waited. And waited. I couldn't see my face but I could feel that it was as red as a tomato. 25 MINUTES LATER there was FINALLY no one left and I could change. I just wanted to die there on the spot. I can't throw my brief away in the trash either, since it is a really small trash can, so I have to tuck the used brief under my arm, and walk to the break room to put it in my bag so I can toss it later.

This is so damn stressful!!!!! I try to put off a change until 3PM since some people start leaving then. Even though I am wearing plastic pants as well, if I decide not to change then every time I have an accident I am literally thinking in my head "please please please do not leak."

I'm stuck behind a rock and a hard place. I want this job. I need this job. I can't sit idly at home. And not to mention, this job pays a lot more than I make on disability. But at this point, I don't know what to do.

I just saw my urologist yesterday. While she prescribed me detrol LA which helped a tiny bit, it's not nearly enough. I've tried a lot of meds and nothing seems to work. She suggested botox, but I am really leery of this, especially since I hear that it can help roughly 50%. With all the risks involved, I don't this outweighing the rewards. If I'm taking a risk like botox, I don't see the result yielding not needing diapers if there is only a 50% improvement.

My urologist softly implied there aren't many options left at this point other than botox...

So, at this point, I'm just giving up. Throwing in the towel. Before, even when I had an urge to pee and I knew I couldn't hold it, I'd still try, just so that I wouldn't completely lose the sensation over time. What's really the point now? It's uncomfortable holding it, and if I try really hard (which hurts), there's only like a 10% chance I'll make it on time.

Welcome, Ski, and feel free to "rant", as many of us here can feel your frustration, having experienced some of what you've been thru.

Thank you for your service! We also have veterans in our ranks here, and they've done battle with the VA to get help and also to get better diapers as needed.

You've been thru a lot and I really commend you for not wishing to stay with the "drugged state" and are doing your part to hold down a job and get on with life, despite the hardships and dealing with things most will never be able to understand.

Your long days at the job do require changing a diaper but I'd like to suggest something that works well for me. I wear a "good" diaper that fits me well. That can be an Abena, Molicare, Dry 24-7, Tena Slip ...... there are a lot of good diapers on the internet now, that will ship discreetly in unmarked boxes to your address. The fit is the main thing and disposable diapers fit different people differently. Once you find the one that fits you well, that will be your "go to work" diaper and you will have a size 6 baby diaper placed inside that diaper in the crotch. Now you only need carry a few baby diapers... much smaller to carry from your back pack to the bathroom. No need to remove the primary diaper....just pull out the wet baby diaper and slide a new one down and into place in your crotch. This does require dexterity but I assume you have no shoulder problems that would inhibit your ability to accomplish this. I unfasten my pants in the stall, then reach in the front of my diaper and push the wet size 6 diaper down into the crotch and toward the back. Then I reach in the back of my diaper and pull the wet baby diaper out. Roll that up and tape it as a smallish lump to carry out. Unfold the new baby diaper and stuff it in from the front of your diaper....down into the crotch, until you can reach it from the back of your diaper and pull it up a bit so it is positioned like a loin cloth.

I will advise wearing snug fitting whitie tighties (cotton underwear - briefs) as they will help support your primary diaper. Plastic pants are a good option and will not interfere with this changing operation, that is all done with the primary diaper taped in place and only minimally disturbed with your reaching down inside it.

I have been amazed with what a size 6 baby diaper will hold. I have gone 12 hours with just one baby diaper. I have pulled out the baby diaper mid day and NOT replaced it, letting the primary diaper go the next 6 hours. But to be on the safe side, I would allow two baby diapers per work day.....so you have, in effect, three "changes" for just two baby diaper change outs. When you pull out the second baby diaper mid afternoon, do not replace it, go with your primary diaper for rest of the shift and the commute home.

Your carrying a baby diaper in and out of the bathroom should be easier than the full size diaper. Your changes will be (should be) much easier with no need to unfasten the adult diaper and remove it, to tape on a new diaper. And sliding a baby diaper out and a fresh one in, makes no noise....no tape ripping noise that you may have wanted to avoid that time you were stuck in the stall for 25 minutes waiting on others to clear out!

On the money side of things, baby diapers are cheap compared to our adult diapers. You will save money with just one adult diaper per work shift with one or two baby diapers thrown in.

I do hope this helps you by making your changing easier and less stressful.

Good luck and hang in there!

JoeK

Hi Ski

First I want to thank you and all service men and women for your sacrifice in keeping this country safe.

I also do not like the word diaper being used.

During my working years I used condom catheters or a McGuire urinal. I know I have heard all the comments about them but they did get me through my working years without embarrassment. I never had a leak or have one completely off to me they worked well.
They are so easy to hide underclothing and easy to take care of just empty it the men’s room.

Don’t give up I been doing this for 35yrs and have tried just about everything looking for the better mouse trap.

Anyone that has truly becomes incontinent feels the way you do now and it’s not fun.
I brought up condom catheters and McGuire they are the most overlooked simplest way to control urine leakage. They don’t work for everyone but I had good luck with them.

take care
2lyle

Hi 2lyle,

I tried a condom catheter, one made of silicone and the other of latex. The problem I ran into is that the tube would twist or kink, restricting the flow of urine during an accident, causing back pressure into the catheter. Even if this didn't cause a leak, it would cause the catheter to slip off, sometimes before I had a chance to re-adjust it.

i looked into the McGuire urinal, but I haven't actually tried it. I would think they would leak badly if you had a moderate accident and were sitting down, especially given the fact that I have a desk job.

Hi Ski

The McGuire urinal has an inner sleeve that makes the seal. The seal works much like a diving drysuit. They do have to be cut so it is not too loose or too tight, but once it is done I was able to wear it all day.

I know catheters are not for everyone but it is an alternative to pads and much easer to conceal under clothing.
This is what makes having bladder or bowel problems so hard to take; there is no easy way to stop it or good protection that people are willingly to except.

I hope you find something to work for you.

All my best
2lyle

Really, condom caths (sheaths in the UK) are the simplest and best way to go but it takes time to work out the best way to make things work and to keep the tubes running properly, I have used these for many years - in fact I have such a system on now. I sit down all the time (in the wheelchair) and drainage works fine.

Now, obviously, there are more problems when on is walking about and I think it comes down to the way the bag and tubes are secured to the leg and, or course, getting the length of the drainage bag tubes right too. For example, this bag is available with and adjustable tube to allow you to get the length just right (sorry this is the UK site but the USA one failed to show be bags. I use Aquasleeve to hold the bag on the leg. There's no picture but it is a sleeve of elasticated material that goes around the lower or upper leg (tip - lower works better) and folds over the bag. Being elastic it holds well and doesn't slip down like straps do. You ought to be able to get samples of these products from here - you can probably ring up for that as the web site is awful. With a bit of care you can get these to work for you and stay dry all the time.