www.incontinentsupport.org

While the VA Urologists haven't officially decided how I started becoming incontinent at 27 (I first had some symptoms in 2005 while in Iraq that I chalked up to stress), they recently told my wife that it was caused by my TBI (Traumatic Brain Injury). Sadly, they told her while I was having a cystoscopy done, rather than putting an official opinion on paper. I am currently rated 100% Permanent and Totally Disabled by the VA, so their decision wouldn't change anything, but it would be nice to be acknowledged.

While I was on my second tour in Iraq I suffered upwards of 20 concussive events due to the extensive use of IED's (Improvised Explosive Devices) by the insurgents targeting the convoys I was protecting. These explosions caused a lot of internal damage, my lower back has two fused disks now, the cartilage in my knees is shot and then made worse when the doctors treated it by prolonged use of cortisol steroids. I have been diagnosed with PTSD, GERD (acid reflux caused by stress), and TBI with a multitude of secondary symptoms: migraine, balance and coordination issues, memory loss, tinnitus (ringing in the ears), and what they called stress induced tremors. Further, the urologist has diagnosed me with Chronic prostatitis and urge incontinence. They found non-cancerous polyps in my bladder, which they tested and found to be nothing. They tried to blame my psych meds, until I told them I don't take them and then blamed my Amitriptyline, though my neurologist said that wasn't it after running a lot of tests. They ultimately did more tests than I could count or remember, tried too many pills and ended up with the advice to "manage it as best as I can and come back if it gets worse." Not sure what that even means?

As far as my symptoms, well at first it was just the feeling of always having to pee which was annoying but manageable. Then I started taking sleep meds, which meant I stopped waking up to go pee at night, though I would then piss myself. We started using diapers and thought it was just the side effect of being deeply asleep. Then the strong urge started and I'd rush to the bathroom hoping I'd make it. It became dangerous, as I'd fall on the way and sometimes not make it anyway. To treat that I would drink less than 20 ounces of fluids a day, and only water. This brought on dehydration and the issues that that brought on, however it was what the urologist recommended. Sadly this contradicted the advice of the rest of my medical care team, but those doctors weren't stopping me from pissing myself in public so I listed to the bad advice. Finally I was given a new urologists, my wife can be very forceful when she gets her dander up, and told that I shouldn't dehydrate myself. The nurse practitioner and former Green Beret Medic on my care team told me to suck it up and drink a gallon of water a day. Apparently the heavy use of cortisol to keep me in the field after injuring my knee is causing problems and I need to drink extra water to continuously flush my system (was also aimed at helping me loose weight). That nurse said not to let a little pee kill me, though he too hesitated to advise the D word. After much soul searching, and wifely nagging, I decided I would drink the fluids and wear the diapers because when I drink anything it seems to instantly become pee that wants out.

This is where I am today, having reached that decision but not started acting on the 24/7 bit. I am trying to figure out how to make that work on a day to day basis, so I found you guys. I hope my rambling post answered the question for this section!

SGT MIKE
aka PORKCHOP

Hi, Porkchop, and welcome to the forum. Thank you for your service to our Country.

I'm sorry that you have experienced physical trauma and medical abuse. I hope that's all behind you now, and that you will get to a place where you can manage your incon with minimal effort and inconvenience. This forum is a group of very friendly, caring, and knowledgeable people who will offer unending moral support and useful information (btw, the primer section on the main website is fantastic).

Wetters

Wetters wrote:Hi, Porkchop, and welcome to the forum. Thank you for your service to our Country.

I'm sorry that you have experienced physical trauma and medical abuse. I hope that's all behind you now, and that you will get to a place where you can manage your incon with minimal effort and inconvenience. This forum is a group of very friendly, caring, and knowledgeable people who will offer unending moral support and useful information (btw, the primer section on the main website is fantastic).

Wetters

Wetters, thank you for your kind welcome! As for the 'medical abuse,' they were just concerned about keeping us combat ready and in the field. I get it, while in country, what appalled me was that they kept it up once we got home and that nobody caught it. Luckily our VA hospital has fired the staff in question, and their licensing board investigated. Not sure what happened after they left the VA, didn't care to follow up. I try to stay positive about it, because the alternative leads to the crazy house! As for managing my incontinence, well that is why I am here! Oh, and I am slowly working my way through the primer, thanks for mentioning it!!!

Michael

Hi Mike welcome to the group and thank you for your service

You won't find a better support site or supportive members then here you will find a ton of info on dealing with IC issues and remember you are not alone in having to wear diapers to deal with IC.

If you have any questions just ask and some one here probably has the answer.

Thanks Rob!!

Mike thank you for serving this great nation. I went through, I'm going to cut down on my liquid thing. Well that cause you a how list of issues that you wont like, so drink lots of water your diaper will catch it for you. The people on this forum like it says, are a caring community and for that I'm thankful.

mlhjr wrote:Mike thank you for serving this great nation. I went through, I'm going to cut down on my liquid thing. Well that cause you a how list of issues that you wont like, so drink lots of water your diaper will catch it for you. The people on this forum like it says, are a caring community and for that I'm thankful.

Thanks for that, I have just come to the "dehydration is bad" realization, so now I am struggling to figure out how to incorporate diapers into my daily life. Unfortunately, I have to care if my diapers are noticeable. My youngest son, who is almost 7, is autistic and not potty trained yet. It would be hard for him to understand that potties are for poopies, not diapers, if his daddy is wearing one. He is a very literal person, so we are trying to get him trained up before he catches on to my issues. I have some mobility issues, walk with a cane and have balance problems, so I am trying to figure out the daily logistics. I guess I will need to come up with a diaper bag of sorts and figure out what to load into it, something discreet I guess.

Porkchop,

Add my welcome to those above. You will discover that a well-stocked diaper/gym bag is a life-saver, especially when you are out and about. If you have mobility issues, you might consider restroom mapping. Keeping a mental map of your location and distance/time to the nearest clean handicapped restroom is a valuable skill. If our son is incontinent due to autism, you could be a valuable asset to him, especially in dealing with his school or camp counselors. Knowing that daddy is incontinent, but is getting along well nonetheless, could be a good ego boost. Granted, you want him to grow up and no longer need to wear diapers. Wonderful. Either way, you have been there for him. Kudos.

Although my medical situation is not related in any way to combat, it does have similarities to your situation. When a patient presents with multiple medical issues, deciding which ones need priority attention is difficult. Informing the medical professionals about how they interact in daily life is always a challenge. They need to know the difficulties we face, and how we deal with them.

Again, welcome. I hope we can be of assistance.

Patrick wrote:Porkchop,

Add my welcome to those above. You will discover that a well-stocked diaper/gym bag is a life-saver, especially when you are out and about. If you have mobility issues, you might consider restroom mapping. Keeping a mental map of your location and distance/time to the nearest clean handicapped restroom is a valuable skill. If our son is incontinent due to autism, you could be a valuable asset to him, especially in dealing with his school or camp counselors. Knowing that daddy is incontinent, but is getting along well nonetheless, could be a good ego boost. Granted, you want him to grow up and no longer need to wear diapers. Wonderful. Either way, you have been there for him. Kudos.

Although my medical situation is not related in any way to combat, it does have similarities to your situation. When a patient presents with multiple medical issues, deciding which ones need priority attention is difficult. Informing the medical professionals about how they interact in daily life is always a challenge. They need to know the difficulties we face, and how we deal with them.

Again, welcome. I hope we can be of assistance.

Thanks for the advice! We recently found the cause of my youngest sons trouble for his bowel incontinence. His bowels are impacted, so now he is on a laxative (Mirulax?) regime, which seems to be working. Now he just has to learn to recognize the urge to go, but from here on out it is a learning thing to catch up. That was very encouraging for us, hopefully we are almost done buying him diapers! As for me, basically the VA figures if you are managing then you should go away. The diapers they provide are crap anyway, so other than a note on my file at some point I am not sure what to do. They ran out of pills to try or tests to run, so it is all about management. They offered no advice or thoughts on that one, which by reading up seems pretty common.

Porkchop, welcome to the ISC forum!
I am sorry about your trauma, pain and symptoms- and especially having to deal with frustrating doctors and "medical professionals".
I think many of us, including myself, have had plenty of unnerving experiences trying to find answers- and dealing with less than pleasant or competent 'docs'. Following my car accident last year I suffered tons of pains and symptoms ranging from bowel and urinary, to weird twitchings, anxiety and panic attacks, PTSD, depression, and the most unnerving of all- pelvic pain. I myself have kinda given up and sort of learned to just manage the situation- it really help reduce my anxiety and stress quite a bit. I wouldn't say exactly a 'defeatist attitude'- more
of a, "Ok i got much more important things in life i want to focus on and do. No major cancer, disease or pain right now- No way a little padding will get in my way!"

Heres a couple quick tips:
1) Regarding the PTSD- I recommend checking out the support group if you haven't yet already https://www.myptsd.com/ It has wonderful amount of information, articles, forums and helpful members who have gotten me through some bad bouts. I would also suggest you look for mindfulness and EMDR therapists
2) Regarding the bowel issues of constipation & impacted stool- I agree Miralax is pretty good as a laxative and stool softener. Miralax can help relieve some constipation in the bowels. Also helpful is doing slow, deep tummy massage (clockwise encourages BM, counter slows BM). And enemas(particularly 'high volume enemas') while not necessarily the most pleasant thing, are great preventative measure and means of cleansing out very hard impacted stool
3) In terms of 'discreet protection', it really depends on a few factors:
a) how severe your incontinence/leakage is
b) how long you plan to be wearing it
c) your financial status and how much you can really afford
You can check out some good diaper reviews online. diaperman on youtube (http://www.diaperinfo.com/) has a number of good somewhat helpful reviews. You may also have to experiment to find your own financially sensible, secure level of protection. There are ways of being discreet even when you use the highest level of protection (Dry 24/7) such as wearing a plastic pants to hide odor, sound & leaks.

Hope these tips are helpful and again welcome