Has incontinence ever stopped you from doing something you really wanted to do?

[Diaperman95]

For the most part I don't let it slow me down to much. I mean I did not have a lot of sleep overs as a kid but I worked all the jobs I worked without it slowing me down too bad. I remember My Jr year in high school I was going to sign up for the national guards and do basic over that summer leading into my Sr. year. I was going to do that so they would pay for some schooling. I went as far as filling out papers and everything else. The recruiter asked me If I have issues peeing around others. I said not normally but that I get bad bladder spasms and leak a little but at the time it was the worse at night and I get UTIs a lot for a guy.. Once he realized I used absorbent product and I had a active bleeding ulcer from all the stressofthis shit at 17 yrs of age. he said I don't know if we can make his happen. And that was that. My Military carrier over before it could start.

Then by the time I was 19 I had got a diagnosis for it as interstitial cysts and a neurogenic bladder. my bladder does not empty complete I use to get infections like mad during school years and never knew why. All the teacher was told if I need to go to the restroom not to make me wait until break. So me being smarter than the average bear I would wait tell class is in session real good and then go change when I was in the restroom all alone. The DR had me start self cathing once or twice a day to keep stale urine out. But you can still get a infection from the catheter too so it really is a catch 22. I still have to do it to this day.
I really did want to see what kind of a man the military could make me into. I have nothing but respect for all the young man that went in my place. I have nothing but respect to are military personnel i general. Sorry I was notable to help out.

This is the only and really only time that I let incontinence stop me . What job did you pass on because of your incontinence? Maybe a life guard or a dancer. Some dancers wear very reviling cloths.

 

[nwm]

ic and lots of other issues been there my whole life (although not all known for some time, last dx actually came at 25) but while it took extra planning at times, not actually stopped from doing anything.
You mentioned sleepovers as a kid - didn't even stop that, ic was a well known issue from school anyway so why worry about something that was common knowledge anyway? Not all invites were accepted, but not because of trying to keep anything a secrete, it was because those particular kids were just plain mean to me over my issues.
As for jobs - well mostly other issues that prevented that, but ended up doing a lot of computer related work on my own out of my home, and at times online anyway - some sort of stuff I would have wanted to anyway, just maybe not as much work, and I had to find it myself, but at the same time, more profit for the same thing, and no need to play by anyone else's rules.
But yes maybe I could have had a LOT more wealth if all those issues were not there, but I can't say it really stopped anything, just maybe some extra planning - and the loss of wealth - well yes that stinks, but at the same time - never had to answer to anyone about anything, so idk...

 

[Napincolove]

When my ic first needed assistance in managing the problem I was terrified someone would notice I had a pad in my underwear and I will admit it did rather limit my options as to what I could and could not do
I spent 4 or 5 months not doing anything until one day I bought some plastic pants and put them on over my pad and underpants, that's when I discovered freedom again andcshortly after this came the full on Nappy in disposable form and once again freedom only this time it was total freedom and has been ever since, so NO it does not stop me doing anything that I would have done before.

 

[Pino]

Hi,

well, i am a "stay-at-home-dad" for 10 years now due to my MEcfs, the bladder problems started 2018 and the incontinence in December 2019, until now it has not changed very much, because i am at home most of the time, the pandemic did the rest.

But i am really worried about my sports, it is already restricted a lot because of POTS (not officially diagnosed yet), and when the incontinence would get worse, i could not do that any longer. At the moment i can hold long enough to get to a toilet at the sports in between, when that would change, it would be over and i would have to stop. It is not thinkable to wear a diaper during Judo and BJJ, no way.
I wore a pants during sports after cystoscopy due to the dripping blood, and it was O.K., but with an completely unreliable bladder, the pants would not be enough.

I am already thinking about ways to do it even than, like a blocked foley combined with pants, but i really do hope i will not have to test it.
Maybe the Botox will take away my worries.

 

[slimjiminy]

My IC started a year ago, so I am still learning my "limits". Last summer I went to an work island retreat, which for me was the ultimate test. It would have been simple enough if my IC was not a secret, but maintaining the secret made it difficult. It required an 8 hour shared drive up there and back. The MegaMax pulled through for that, though part of that trip uncomfortable. On top of that, there was a lot of BBQ fried food, which eventually resulted in my having some diarrhea as I was trying to reach the outhouse in the middle of the night. In short, I did manage it but question if I want to do that again.

In other aspects of life, I don't foresee much of a problem since I am only urinary incontinent (ignoring a few diarrhea accidents). Because of COVID, we haven't had our longish get togethers in the parks, which will present a problem (keeping my need for changes a secret). That is really the only challenge I have to test yet, as far as I can see. My immediate family and few close friends know but otherwise I see no need to advertise my condition.

 

[Diaperman95]

Hi,

well, i am a "stay-at-home-dad" for 10 years now due to my MEcfs, the bladder problems started 2018 and the incontinence in December 2019, until now it has not changed very much, because i am at home most of the time, the pandemic did the rest.

But i am really worried about my sports, it is already restricted a lot because of POTS (not officially diagnosed yet), and when the incontinence would get worse, i could not do that any longer. At the moment i can hold long enough to get to a toilet at the sports in between, when that would change, it would be over and i would have to stop. It is not thinkable to wear a diaper during Judo and BJJ, no way.
I wore a pants during sports after cystoscopy due to the dripping blood, and it was O.K., but with an completely unreliable bladder, the pants would not be enough.

I am already thinking about ways to do it even than, like a blocked foley combined with pants, but i really do hope i will not have to test it.
Maybe the Botox will take away my worries.

I really urge you to leave the foleys alone if you can. With my I/C they really irritate my bladder after several hours anyway. And they are the fastest way I can think of to get a bad infection. Besides you will most likely leak right by it if you plug it. Most the people that use them like that do so because they can not empty at all. I had a tube kink in the hospital once. I told the nurse I think I just pissed all over my self. She first assured me the bag was half full but sure enough the tube kinked and I peed right around the catheter. Fresh new sheets and I was good to go.

I have never used one but they also make a penal clamp the just press a mans tube shut. They don't sound real pleasant but sound way better than a foley feels.
I always wanted to learn Judo. Steven Seagal always makes it look so easy.
I am not fat enough to sumo wrestle but Diapers are ok there.

Just do yourself a favor and don't let it rob you of things in life you enjoy. I have so many health issues I would of never made it in the military anyway but I never it let it stop me from a job I wanted.. My only sport I do now is bowling and with all the older people on league I doubt very serious I am the only one in a diaper. I wish you the best of luck. please keep me updated as the doctors figure things out.

 

[Pino]

I really urge you to leave the foleys alone if you can.
I have never used one but they also make a penal clamp the just press a mans tube shut. They don't sound real pleasant but sound way better than a foley feels.
I wish you the best of luck. please keep me updated as the doctors figure things out.

Hi,

well, maybe i am naive, i just tried one for two hours and that was O.K. - when i have to wear longer in near future, that idea will vanish when things develop like you just told me. So, don't worry.

The clamps don't work for my kind of incontinence and would not be a good idea in the sports.

I will have to deal with that problem when the time has come, perhaps i it wont get any worse...

Of course it will, the nerve damage will get worse, that is the problem with chronic illness.

My last ME-Boost (normal flu) got me incontinent - and much more - no idea what Covid will do to me, once i get it. I try to avoid the worries, but perhaps my inco will be my smallest problem, you never know.

In February i will know more about the neurological damage. At least i hope so. Thank you for your support, as always.

By the way: "I always wanted to learn Judo. Steven Seagal always makes it look so easy." That hurt, i do full contact combat sport.

 

[DiaperDiva]

I enjoy overnight hiking trips and managing my IC while also covering a lot of ground is a challenge. It limits how far or how many nights I can go out in a row. There are several considerations, like the extra space in my pack I need for clean diapers and supplies. Then, I need to pack out my used diapers which means my bag is getting heavier as the hike goes on. You’re essentially having to carry all of the water you are drinking in swollen diapers in a compression sack.

Hygiene quickly becomes an issue. After an active day of hiking (and heavy wetting) and my tent is set up for the night, I’ll experience a bigger issue: my night time fecal incontinence. So I wake up with a loaded diaper, enjoy the sunrise, make my coffee, and then I have to deal with that. I use a trowel to dig a hole for the contents, use the diaper to get what I can, then use wipes. It’s not nearly as thorough as a bath, but I change and then pack my dirty stuff in the compression sack.

My maximum seems to be three nights in a row, after that my pack is too heavy, my back is sore, and my scent is warding off bears! So incontinence doesn’t stop me from backcountry hiking completely but it limits my potential for achievement of longer trips.

 

[Pino]

I enjoy overnight hiking trips and managing my IC while also covering a lot of ground is a challenge. It limits how far or how many nights I can go out in a row. There are several considerations, like the extra space in my pack I need for clean diapers and supplies. Then, I need to pack out my used diapers which means my bag is getting heavier as the hike goes on. You’re essentially having to carry all of the water you are drinking in swollen diapers in a compression sack.

Hygiene quickly becomes an issue. After an active day of hiking (and heavy wetting) and my tent is set up for the night, I’ll experience a bigger issue: my night time fecal incontinence. So I wake up with a loaded diaper, enjoy the sunrise, make my coffee, and then I have to deal with that. I use a trowel to dig a hole for the contents, use the diaper to get what I can, then use wipes. It’s not nearly as thorough as a bath, but I change and then pack my dirty stuff in the compression sack.

My maximum seems to be three nights in a row, after that my pack is too heavy, my back is sore, and my scent is warding off bears! So incontinence doesn’t stop me from backcountry hiking completely but it limits my potential for achievement of longer trips.

Well, that makes my problems to look small.

It is really impressive you still do that, i am serious.

 

[Wetshisbed]

For the most part I don't let it slow me down to much. I mean I did not have a lot of sleep overs as a kid but I worked all the jobs I worked without it slowing me down too bad. I remember My Jr year in high school I was going to sign up for the national guards and do basic over that summer leading into my Sr. year. I was going to do that so they would pay for some schooling. I went as far as filling out papers and everything else. The recruiter asked me If I have issues peeing around others. I said not normally but that I get bad bladder spasms and leak a little but at the time it was the worse at night and I get UTIs a lot for a guy.. Once he realized I used absorbent product and I had a active bleeding ulcer from all the stressofthis shit at 17 yrs of age. he said I don't know if we can make his happen. And that was that. My Military carrier over before it could start.

Then by the time I was 19 I had got a diagnosis for it as interstitial cysts and a neurogenic bladder. my bladder does not empty complete I use to get infections like mad during school years and never knew why. All the teacher was told if I need to go to the restroom not to make me wait until break. So me being smarter than the average bear I would wait tell class is in session real good and then go change when I was in the restroom all alone. The DR had me start self cathing once or twice a day to keep stale urine out. But you can still get a infection from the catheter too so it really is a catch 22. I still have to do it to this day.
I really did want to see what kind of a man the military could make me into. I have nothing but respect for all the young man that went in my place. I have nothing but respect to are military personnel i general. Sorry I was notable to help out.

This is the only and really only time that I let incontinence stop me . What job did you pass on because of your incontinence? Maybe a life guard or a dancer. Some dancers wear very reviling cloths.

Fortunately have always done what ever I want even though I wear nappies 24/7

 

[greatlake5]

an active day of hiking

I love this too. I live in western Michigan right on Lake Michigan. On a couple trips I found a place in northeastern Michigan. They have only 25 walk-in (rustic, remote and isolate) campsites. Takes maybe 5 miles to get the site and lives right on Lake Huron. It's hard to get a reservation but well worth it getting one. I stayed for 10 days. Nobody see's us the hole time. I just had to walk out every 3 days to get rid of dirty diapers. No big deal. I use my own tent (for privacy). The site is very remote and right in front of Lake Huron. For cleaning I just take a a fast bath in Lake Huron (yeah, kinda cold). Plenty of great trails and beautiful nighttime stars.

I try to not limit myself. Being IC does complicate things (like dating) but I have a few friends that understand my issues. If they ever finish that covid virus I'd love to see Europe again. Just because I'm diapered doesn't stop me.

 

[Abdlchriscrinkle]

Yeah, keeping a wife or girlfriend...

 

[DiaperDiva]

I love this too. I live in western Michigan right on Lake Michigan. On a couple trips I found a place in northeastern Michigan. They have only 25 walk-in (rustic, remote and isolate) campsites. Takes maybe 5 miles to get the site and lives right on Lake Huron. It's hard to get a reservation but well worth it getting one. I stayed for 10 days. Nobody see's us the hole time. I just had to walk out every 3 days to get rid of dirty diapers. No big deal. I use my own tent (for privacy). The site is very remote and right in front of Lake Huron. For cleaning I just take a a fast bath in Lake Huron (yeah, kinda cold). Plenty of great trails and beautiful nighttime stars.

I try to not limit myself. Being IC does complicate things (like dating) but I have a few friends that understand my issues. If they ever finish that covid virus I'd love to see Europe again. Just because I'm diapered doesn't stop me.

that sounds awesome! It’s so special getting away from the crowd and into nature. Very good idea to set up a base camp and hike from there, rather than a through hike where you need to carry everything every day.
Good point about bathing in the lake, I was thinking about one or two trips where that wasn’t really an option. It was dry weather and the sources of water were low. It’s also rude to bath in the only drinking water for hours lol!
now what we really need are fully biodegradable disposable diapers that could be buried on the way, that would solve a lot of my problems.

 

[greatlake5]

It’s so special getting away from the crowd and into nature.

Really! I still live in a small town right here at Lake Michigan but there are people here that still live pretty close. When I want to get away I love to go north and we have tons of real get-a-way places. Lots of camping and take some trails. But that camp at Lake Huron was always so remote. No people. The nearest camp was around a mile. And trails everywhere. If I'm doing a day long hike I only have to keep a few diapers, food and water. I'm sure there are a bunch of isolate camps in Canada.

Being IC can make camping difficult. Traveling can be problematic too. But it is what it is. It's never stopped me from doing something I really enjoy.

 

[ParaRomeo]

I think it depends on the person and if something goes along with the ic. So I became IC after a spinal cord injury so for me ic is part and being paralyzed other part . I do think in the beginning IC did make me miss things because I didn't know of a combination that worked for me originally.

Fortunately ic products have evolved over time and trying to plan how and where to change isn't much of an issue and that is another part of ic is if you have any mobility issues or issues like I know some. people with ic that wears diapers and have tried but only way to get them to fit is to change laying down and public bathroom floors aren't very clean. I have talked to people like a nurse who was like how hard can it be I had kids and never had an issue there is a big difference between a 25lb person and a 200lb person also society and personally things are different. If you have a baby that needs to be changed it can be done almost anywhere adults not so much and adults have pride and sometimes hard to ask for help
But also for me it's been 10yrs since my accident so it's kind of different in a way because over those 10yrs I figured what worked for me because not every product for ic works for everyone and it can be as basic as type of ic you have. I know other people with spinal cord injuries that have retention issues and need a Foley cath, I know people that straight cath and wear only a pad and there are hundreds of combinations. Me personally I have a high risk of infection so caths can make me super sick but still tried them, condom caths didn't work, end of the day diapers are what works best for me and my urologist is good with that plan.

I rarely had an issue with ic but in 2020 I got the coof well before the jab was available and had some symptoms I still deal with now because of the coof and one is like fluid retention and I take Lasix which is a diuretic which makes you pee more to get rid of the extra fluid and you may of had the best plan and those meds can F it up. I personally try not letting incontinence dictate what I can and can't do and sometimes it's not IC it's me personally that limits myself it's mental games or it can be other injuries or disabilities.

I think if you have a great preplan in place and go over it for the situation there is much that will stop you from doing whatever it is you want to do. Incontinence for the most part is more annoying yes it can be a challenge with relationships but honestly if you find someone who loves you for who you are than that's just a small detail. Me personally I am not interested in finding someone right now but I know other with other disabilities and having successful relationship. I have female friends some know and none of them treat me differently and I don't tell everyone but had times where fortunately having friends that knew has helped.
End of the day happiness is a choice, I wish when I first got hurt I had the drive and outlook I do now. Ic sux but with proper planning anything can be done. I work full time, also prepandemic was avid Para athlete including doing marathons, also try to enjoy life.

 

[Eclectic]

The short answer is no, but it does make certain things challenging. I've done a lot of hiking and, fortunately, I can usually wear a pull-up and stop and pee in the forest the second I feel an urge coming on. Sometimes I make it, sometimes I don't. Nighttime is more challenging because I pee throughout the night and in my sleep so I have to wear thick diapers at night. My irritable bowel is also challenging and I've had many bowel accidents while hiking and camping.

Like DiaperDiva said above, I've done through hikes or camped in remote places and packed out my soiled diapers. It's a bit of a pain, but things could always be worse. It has made my job challenging at times too, especially when traveling with colleagues and carrying an extra suitcase full of diapers.

I've never been 100% incontinent, but I've also never been 100% continent (bladder and bowel). So it sucks, but I'm glad for the little control I do have.

 

[Babybear2006]

Being a bedwetter as a kid kept me from going to some sleep overs unless I knew that they were also bedwetters but 8t also kept me from getting to go to some camps. The only camps I went to was boy scout camp that I later started to staff at but I kept my pullups in my trunk and put them on in private showers and my bedwetting problems was documented on my physical form. I was not abled to go to 4H camps.

 

[Troy]

It has stopped me from getting to work a few times when I have messed myself on the way to work. But now I have made the decision not to let it stop me from doing anything. I might be late dew to clean up but I will still get there. Luckily this doesn't happen very often or though it's getting more frequent

 

[Diaperman95]

I think it depends on the person and if something goes along with the ic. So I became IC after a spinal cord injury so for me ic is part and being paralyzed other part . I do think in the beginning IC did make me miss things because I didn't know of a combination that worked for me originally.

Fortunately ic products have evolved over time and trying to plan how and where to change isn't much of an issue and that is another part of ic is if you have any mobility issues or issues like I know some. people with ic that wears diapers and have tried but only way to get them to fit is to change laying down and public bathroom floors aren't very clean. I have talked to people like a nurse who was like how hard can it be I had kids and never had an issue there is a big difference between a 25lb person and a 200lb person also society and personally things are different. If you have a baby that needs to be changed it can be done almost anywhere adults not so much and adults have pride and sometimes hard to ask for help
But also for me it's been 10yrs since my accident so it's kind of different in a way because over those 10yrs I figured what worked for me because not every product for ic works for everyone and it can be as basic as type of ic you have. I know other people with spinal cord injuries that have retention issues and need a Foley cath, I know people that straight cath and wear only a pad and there are hundreds of combinations. Me personally I have a high risk of infection so caths can make me super sick but still tried them, condom caths didn't work, end of the day diapers are what works best for me and my urologist is good with that plan.

I rarely had an issue with ic but in 2020 I got the coof well before the jab was available and had some symptoms I still deal with now because of the coof and one is like fluid retention and I take Lasix which is a diuretic which makes you pee more to get rid of the extra fluid and you may of had the best plan and those meds can F it up. I personally try not letting incontinence dictate what I can and can't do and sometimes it's not IC it's me personally that limits myself it's mental games or it can be other injuries or disabilities.

I think if you have a great preplan in place and go over it for the situation there is much that will stop you from doing whatever it is you want to do. Incontinence for the most part is more annoying yes it can be a challenge with relationships but honestly if you find someone who loves you for who you are than that's just a small detail. Me personally I am not interested in finding someone right now but I know other with other disabilities and having successful relationship. I have female friends some know and none of them treat me differently and I don't tell everyone but had times where fortunately having friends that knew has helped.
End of the day happiness is a choice, I wish when I first got hurt I had the drive and outlook I do now. Ic sux but with proper planning anything can be done. I work full time, also prepandemic was avid Para athlete including doing marathons, also try to enjoy life.

You have a some real challenges in your life. More than me but you have the right attitude by all means. It would be amazing if some of the large restrooms in public places had a table and a roll of paper to roll out so you can lay down. I do not blame anyone for not wanting to lay if a dirty restroom floor. I can only imagine it is way more difficult for a person in a wheelchair to change with no use or little use of their lower body and some peiple even the upper body. I am fortunate not to be in that boat. I guess every illness or disease has draw backs and we all have challenges. I hate to hear that a person has to have these kinds of illness and injurys. But they do not define us. Only our actions and the way we handle the struggles we face can stop us. Incontinence would be the last thing I would let me get down about. I love it when people with disabilities have sports and choose to live their life. Simple truth is some people just dont have the mental strength sometimes. I most of the time look at the things I can do in life diaper or not. It sounds like you do the same with all your issues. Thank you for sharing this. With us people like you give me strength to endure my own issues. I have had a very bad case of gastroparesis and often feel miserable. but I still make my self get out of bed everyday. Well most of the time. Really not serving my country I do regret and wish I could of changed but then again I would not of ended up with my wife and a baby girl I love had I done it. So I guess it is hard to really regret it.

At least diapers now are good enough they do not have to be changed near as often. Unless it is number 2. But you can get some real use out of a premium diaper.

I amm thinking I can still serve those who fought for me. I am a decent carpenter and welder and have some equipment. I hope this summer I can get with the local VA and I want to donate some time and build some ramps and stuff to make life easier for some of our veterans. I was going to last year but I was just to sick most of the year. But I have high Hope's for my new gastric pacemaker to keep me out of the hospitals. I wish you the best

 

[Diaperman95]

Hi,

well, maybe i am naive, i just tried one for two hours and that was O.K. - when i have to wear longer in near future, that idea will vanish when things develop like you just told me. So, don't worry.

The clamps don't work for my kind of incontinence and would not be a good idea in the sports.

I will have to deal with that problem when the time has come, perhaps i it wont get any worse...

Of course it will, the nerve damage will get worse, that is the problem with chronic illness.

My last ME-Boost (normal flu) got me incontinent - and much more - no idea what Covid will do to me, once i get it. I try to avoid the worries, but perhaps my inco will be my smallest problem, you never know.

In February i will know more about the neurological damage. At least i hope so. Thank you for your support, as always.

By the way: "I always wanted to learn Judo. Steven Seagal always makes it look so easy." That hurt, i do full contact combat sport.

I just want you to be careful. Urine can turn deadly fast if it gets to your blood stream. I like visiting with you we have a lot in common, not many men have IC. So we got to stick together.

I have never used a penal clamp I just know the exist. That and o guess if I thought about it more knowing your story I would know that tje urges and spasms with IC make you have to pee or it hurts so a clamp would not be ideal. That's Why I have never tried one