What is your level of incontinence?

[Incont]

What is your level of incontinence?

[Brian]

@Incont

My level of incontinence is complete and severe. One of the things that worried me was that I would end up having to deal with something that would really bother me. Now that I'm wearing diapers to control the problem and deal with it, it makes it a lot easier for me. I was having accidents anyway and I was making a mess, not only that but I wasn't even sleeping well at night, because I'd spend half the time in the bathroom on the toilet. diapers have given me the ability to not have to worry about such things, and I'm glad that I have made the decision to go to 24/7 diapers. I wouldn't trade it for the world, And every time I have an accident or a near miss, I always think to myself that I'm glad that I made the decision I did, And every time I have an accident like that, the diaper pays for itself, Part of the thing is you have to be able to accept what you're dealing with, and some people may not be able to accept it, but if you can, it makes it a lot easier. it also makes it easier if you have friends or family members that understand exactly what you're going through, And that can keep something that you want to keep under wraps secret from those that don't need to know about it.

I wonder sometimes if diaper manufacturers will understand that we need we need quality diapers:  far too often, we end up using products that probably aren't going to be able to handle our releases, And that's part of the problem. insurance companies and everyone else wants us to try all of the crappy stuff before we get to the good stuff, but very very few people are actually making tabbed diapers that actually work well. in my case, North Shores make it easier for me, because I don't have to worry about the diaper giving out when I need it the most. when you're incontinent, you have to know that your diaper is available to you, and sometimes you have to use it, and there's no way that you're going to be able to hold it, and there's no way that you're gonna be able to avoid having to do it.

As I have said to many people incontinence means that you do not have the control that you need to control your bladder or your bowels! incontinence is not something that is in my mind terrible to deal with, as long as you are able to deal with it and have the right equipment to deal with it. once you have all of that, then it should be very easy to be able to give people advice and experience based on what happens when you're dealing with it. I am glad that there are people that understand what incontinence actually means, and also that they understand that it's something that we deal with, have to be able to accept it in order to move forward, but sometimes what you need is a good friend to be able to help you. daily diapers has helped me to deal with this particular issue others with the same issues. I will try to do that here as well, trying to help people that request it.

I look at it this way incontinence is something that you deal with on a daily basis: it's something that you have no control over, so you shouldn't worry about it. sure you should have the right equipment and the right supplies to be able to deal with it, ensure that it's going to be inconvenient, and that's why I think some of the people don't understand. you have to be able to make changes to your lifestyle so that you can accommodate those changes. you end up giving up control of one thing or two things, but In my mind there's always a positive and a negative. For example, I wear diapers 24/7! if I have to use the diaper, I use it!, and I don't worry about it, because I'm going to do it anyway, so there's no big deal. I also realize that it's better to have dry pants or other clothing rather than wet ones, because your diaper takes care of that. the better the diaper, the better it can handle what you're releasing, and what I always say is the diaper that you use should be able to handle it, or it's not really a diaper, it's just a throwaway piece of bounty paper towels!

I look forward to hearing from others that are incontinent to see how they would respond and how they deal with their situations.

Brian

[Mark]

I have complete bladder incontinence due to a highly irritable bladder, with intermittent bowel incontinence due to severe diarrhoea through IBS-D 

[Brian]

4 hours ago, Mark said:

I have complete bladder incontinence due to a highly irritable bladder, with intermittent bowel incontinence due to severe diarrhoea through IBS-D 

@Mark

Nice to meet you! I know exactly what having IBS, and diarrhea feel like!  one of the most painful things is the pain that you have to go through, and it is not easy to deal with: most times you can easily release And have little to no pain, which means the go is easy, and other times the release is hard and you cannot release at all, and everything hurts. I think that's what I was dealing with in 2018 and 19 before I went full time to diapers in 20. I also ended up having a situation where I almost wet myself a few times, and I also noticed that there were times that I wouldn't even be able to do anything about it. For example I'd be sitting in my chair, and I'd feel something that Normally doesn't have a problem with me but I realized that I had messed myself a few times, and most times I would have that happen while just sitting here in the chair. normally you feel something before you have to release, and your signal to your brain says OK you have a problem, let's go to the bathroom! Then the next thing you know, before I even start to put my hands on my arm rests to rise from the chair, i've already done the damage and I've made a mess!

after dealing with several situations in 18 and 19 with wetting and messing myself, as well as having a few accidents in my bed, then I had to do something. I BS and diverticulitis were the two things that I had already been partially diagnosed with, so those were the two things that I was trying to take care of. add to that that I was constantly having accidents and unable to get any sleep at night because I was constantly in the bathroom, and that is another reason for wearing diapers. if you can't get enough sleep at night, then you can't do anything substantive during the day without being extremely laggy tired and feeling like you're a dead battery.

I am very fortunate that I have a very good medical team as well as a very good support team. I have an awesome case manager that responds to every concern that I've ever had, and helps me to deal with situations. during the pandemic for example, somebody drop the ball with my prior authorization for my incontinence supplies my diapers my pads and my boosters for example, and it took them seven months to be able to put that back into force, and I had to continually call medicaid to be able to determine where this authorization was, and they kept telling me to call the doctor, And that was just a constant ring around ring around and a runaround, because all I was doing was calling the doctor every three days. I later found out my doctor was sending in the paperwork, but something was worked out where my supplier does that, And she knows when it's time to do it, So now I don't even have to ask about it. I also had to get additional supplies, which Medicaid would not pay for, but my case management team helps me to get, so that I can live the best life possible. as I keep telling people, incondence is nothing to fear, and if you have to deal with it, you should embrace it and realize that it is a part of what and who you are, and it's nothing to be afraid of and nothing to be ashamed of. the only thing that really sucks is when you release and you can't get to the bathroom fast enough and you have to change in a unfamiliar or very uncomfortable place. when you learn about your incontinence and how your body reacts, you can make changes to the way you deal with your bathroom habits, so that you don't run into situations that would put you at a negative situation, but many times you don't have the ability to nor the time to decide when things are gonna happen where they're gonna happen or why they happen, you just don't have any control, and being totally incontinent that's the way I am. Instead of worrying about it and having sleepless nights, diapers were my answer. my incontinence is full on, and I'm glad For example for last night, I didn't even realize I was doing it, and I was just wetting my pants three or four times flooded the diaper out, and when I took it off I was glad I had it on, even when I was about ready to change, I ended up having to use it again, so I went into the shower bay to avoid having to clean up urine off the floor of the bathroom where I can go into the shower bay, and then it doesn't matter what I do in there, cause I can clean it up.

All I can say is I'm glad that I made the decision and I did back in 2020! after what happened last night, I am continually reminded why I made the decision I made, and why I'm wearing diapers 24/7. it's time for me to decide to live my life to the fullest extent possible, and not to allow my incontinence to dictate what goes on. sure, you would have to use use the bathroom, and you'll have to change the diaper, because that's part of it, but I refuse to remain a prisoner to my incontinence not being able to do anything because I'm afraid of it. and condenses the least of my worries, and the least worrisome of my conditions, because I know how to handle most other things, and I have a darn good medical medical staff to help me.

Have a great day!

Brian

[John Davis]

My bowel incontinence is total and I estimate that I have as much as 20 -30% bladder control, but only sometimes. Due to nerve damage from pelvic trauma, I shift back and forth unpredictably between voluntary and involuntary bladder control. As I am OAB and a heavy wetter, I wear premium diapers with a booster pad.

Nowadays I get a good night's sleep as I void in the diaper and don't worry about it.  I already was a sometimes bed wetter (I'n not sure how often anymore).  It was impossible for me to get enough sleep if I  got up, removed diaper layers, diapered back up, and went back to bed two or more times a night.  My doctors agreed that sleep was the higher priority.

As I indicated in another post, I manage my bowel incontinence with daily morning old-fashioned enemas.😱  After all, an empty colon cannot have a bowel accident.  Over the years I have self-administered about 7,000 enemas.  After I get "hosed,"🙄 I usually will not have a bowel accident until the following day, so I am relieved of that form of stress.  My SCI rehab docs have approved of my procedures.  I'll be glad to answer any questions about enemas as there is so much bad information out there on the Internet.

I am not ashamed of being incontinent or of wearing diapers.  I am not ashamed of my arthritis, so why should I be ashamed of my other medical conditions?  My diapers have become my underwear.  It's just private.  I like to say "Be thankful for your diapers.  Think how difficult life would be without them."

--John

[Brian]

15 minutes ago, John Davis said:

am not ashamed of being incontinent or of wearing diapers.  I am not ashamed of my arthritis, so why should I be ashamed of my other medical conditions?  My diapers have become my underwear.  It's just private.  I like to say "Be thankful for your diapers.  Think how difficult life would be without them."

--John

@John Davis

Neither am I, nor am I ashamed of wearing diapers, or anything that I'm dealing with. part of the problem that I had was that I was having so much stress that I was dealing with that it was driving me crazy, and since there is a lot of correlation between stress and being able to regress, one of the best things to do is to remove as much stress as you can from your life. when I turned 50, all of my stress seem to be increasing, and it was getting to the point where I just wanted to throw it all away, and go to some place that's warm and comfortable and not somewhere where I have to worry about every little possible thing that happened in the world around us. the world around us is full of craziness that we don't need to deal with, full of people that don't like to tell us the truth, or they manipulate things, or they do whatever they do, in a way to serve their own interest, rather than to deal with problems of the world. I just got sick of having everybody come down on me like 100 pounds of leather, and in their attempt to try to help me, they make it worse because they make me feel like something is definitely wrong with me And I am going to somehow expire.

When you have that much stress on your mind and you're not sure exactly how to handle it, the best way to do it is to realize that your health can be affected. For many years, I haven't been able to sleep very well at night, because I'm constantly getting up in the middle of the night using the bathroom and staying in there for at least an hour hour and a half every night, sometimes more than twice, sometimes I go into the bathroom for example at midnight and I don't come out until 1 AM, so therefore i'm wasting time sitting on the toilet worrying about whether I'm going to release rather than getting the sleep I need, then I end up getting up early in the morning and I'm half dead when I come back. when I found that this was happening, along with my incontinence, along with the stress, I knew that the proper way for me to handle my incondence was to deal with it with diapers, to deal with the stress and the lack of sleep, diapers help me because I don't have to be Superman and try to get to the bathroom all the time. It also helps if I have to release regardless of what I release, because I don't have to worry, and I get a better night's sleep. i'd rather have a wet diaper or a back of a wet shirt than have a sleepless night where I can't function, or I'm half out of it and I just don't have any energy. many times, I ended up thinking like the whole world doesn't understand, and I understand perfectly why I wanted to do what I did, why I needed to do what I did, and why it makes sense. I shouldn't have to worry that part of my body is going to not work the way it's supposed to when it needs to work, or worry that what I'm going to release would inconvenience me. having a diaper on helps me deal with the stress, and all of the feelings, and protects me from incontinence but also helps me with my confidence with my attention span and other things, 'cause I don't have to worry anymore about whether I diaper on are not, or whether I have to use the bathroom.

Like you John, whenever I get a chance to get up in the morning, I take my diaper off and I make sure that I empty out completely. This may be that I use the bathroom for number 2 from time to time, but as much as I can if I know I'm going to go somewhere and I need to go #2, i'd rather have a release of #2 in the toilet rather than to have to do it in a diaper, because it's easier when you know you have to do a BM to do it in the toilet then it would be to do it in the diaper and then have to change the diaper twice. Most of the time, i'm very well aware of what happens, and I can deal with many situations, but having a diaper has really helped me because I don't have to worry anymore if I'm gonna use it, because I will use it. That incontinence is no picnic, and it's no bed of Roses, but we all know what we deal with, and we all try to help one another deal with situations as we move forward.

When I went to diapers in 2020 full time, I realized that I don't have to feel ashamed worried scared or otherwise.  I'm also not ashamed of my medical conditions or the fact that I wear a diaper, because wearing a diaper makes it easier for me to manage things, and I manage them well. I also don't have to worry if I need to go to the bathroom for some reason, and I don't have to run anywhere, I can just use the bathroom wherever I am, knowing that I have to change when it's necessary.

I always look at it this way John, if you can take the disability by the the ring in the bull's nose and take control of it, it won't have you You have it. Sometimes your disability does things you might not be able to control, but I always think of it this way, I have a disability It does not have me, and it's not gonna stop me from being the man that I want to be, being the uncle that I want to be or the cousin or the son that I wanna be. I am very happy with my life, there are things that I wish I could change sometimes but other than that, I am very happy, and I'm very thankful for what I do have, and I'm very thankful for my diapers. there are many people out there that don't understand what incontinence means to the person who is incontinent. they also may not understand a reason for somebody wearing diapers, because they think that everyone may have the control that they think everybody does And so they don't need to, so people may decide to chastise someone for that! that is not that is not the right way to handle it, and we have people who are incontinent and have no control, or are they decide to use diapers for whatever reason, incontinence being the number one reason, but because someone uses a diaper does not make them any different than anybody else, it's just a way that they deal with it. and let me tell you, diapers are hell of a lot more comfortable sometimes than regular underwear, and where can you actually do all your business in a diaper and then get rid of it? You might not be able to do all your business in your underwear, because one hell of a mess is created, a diaper can at least contain that mess while you are cleaning yourself up!

When I hear people say that they want to be in continent, I'm always telling them that it's not all it's cracked up to be, And you will have major changes that you will have to make to your life, and you will have times when you won't be able to control what happens or when it happens or where it happens. It can also be a pain in the neck when you are sick and you have to keep changing diapers because you are trying to get rid of something in your body, I think what they think is fun is maybe if they wet themselves or something, but let me tell you from experience and I've talked to many people that are incontinent, both ways, and it is not something that is somehow easier to deal with. When you're incontinent, you deal with it every day because you have to, You deal with it in a way you have to because that's the way it is: that's life And if and if you run into that situation you deal with it, and there are some people that think that being incontinent is cool, but it really isn't when you talk about medical conditions come we deal with it and we know how to deal with it, and I wouldn't trade my current situation for anything, because my incontinence allows me to wear the diapers, and allows me to have the diapers, as well as the feelings that are elicited are being dealt with by wearing diapers, and it makes me feel like I a safety net.

Welcome @John Davis

Brian

[Iken]

Mine is heavy because I have urinary incontinence and I sometimes have bowel issues as well.  

[zzyzx]

My issues started several years ago where medication used to get over an illness combined to "tweak" how I sensed things....  After getting over the illness, I found a permanent change in how I "sense" things....  End result, left with occasional secondary nocturnal enuresis.  When I void at night, its on a very full bladder, and above average capacity.

Now I'm also dealing with the results of BPH, watching and waiting, Rezūm procedure, and the resulting thicking / strengthing of the bladder wall / mussel, which has reduced maximum functional bladder capacity.  As a result, I now also have a light daytime component to my bladder issues and need to wear at least light protection during the day in addition to heave protection at night.  And with the reduced bladder capacity, the nocturnal component is almost every night.  (If I'm properly hydrated (or better), and get a good nights sleep, I'll now be wet in the morning).

 

[John Davis]

Brian, very well said.  Those who are not incontinent grossly underestimate the importance of stress associated with IC.  Then, of course, there is the "loop" where stress increases IC and IC increases stress.  

For those of us who are bowel incontinent, the potential for stress is even greater due to the inability to really "hide" a bowel accident.  Plus, the social stigma associated with bowel incontinence is even greater than that associated with bladder incontinence.  The stresses associated with fecal incontinence even push some to thoughts of suicide.☹️  It is difficult to find reliable statistics about this as families often suppress such information after the fact.

Socialization via support groups can help reduce stress about a problem.  It is difficult to find opportunities to share the challenges of living with IC.  Unfortunately, face-to-face groups are very rare.  Even more so for fecal incontinence.  That is why this forum can be so important for all of us.  No one's incontinence is more important than anyone else's.  All deserve to be heard and receive help.

--John

 

[Slomo]

Mine has evolved over time, and not for the better. I started with occasional urges, which soon became massively painful urges. Then added to that a blockage, which at its worst made me completely unable to go- at all, and the ER couldn't even get a catheter in me. Lastly I'm now functionally incontinent, and constantly dribble. So that's what I voted for.

[Zombie_Turtle]

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Mine has evolved over time, and not for the better. I started with occasional urges, which soon became massively painful urges. 

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That's where mine is headed i'm afraid.  I switch from painful forceful incon to not being able to release.  For me central nerve disorder caused the OAB and now the bladder and pelvic floor muscles are damaged.  It is painful.  wouldn't wish it on anyone.  

 

[Slomo]

13 hours ago, Zombie_Turtle said:

That's where mine is headed i'm afraid.  I switch from painful forceful incon to not being able to release.  For me central nerve disorder caused the OAB and now the bladder and pelvic floor muscles are damaged.  It is painful.  wouldn't wish it on anyone.  

I full heartily wish you best of luck in getting it resolved then. But do make sure you are actively trying to get it resolved. If your path is anything like I went through, --and you end up pushing and straining to pee--, then it gets worse if left untreated. Much, much worse.

Feel free to message me if you need someone to talk to about it. Or I'm an open book and we can discuss anything right here. That way, others may benefit from our less than pleasant experiences and make what we go through mean something.

 

[Zombie_Turtle]

Thank you, kindly.  My bladder issues have somewhat fallen down the priority list, but I am indirectly actively working on them.  Since a central nerve disorder is the culprit of the bladder spasms, I am taking medications that help improve proper nerve function.  The main reason was to help alleviate the nerve pain that I feel all over different places, at different times.  I have noticed some improvement with the spasms but there is still a reduced capacity and the thickening to the bladder wall.  It took a lot of years to get to where i'm at so I can't really expect a full improvement overnight.  I will not likely recover any capacity in my bladder, but i could reasonably expect improvement with pain (as I am told).  

The problem I (think) I have is my nerves in parts of my body will go from numb to overdrive.  When I am numb I will either be wetting myself without really having any signal and being able control, or I will not be able to urinate at all without brute force. The latter is usually after being dehydrated and in the evening, when I'm in overdrive I will have painful forceful spurts and depending on how hydrated I am, can be a lot. 

 

Honestly I just try not despair about it anymore.  That's why I appreciate folks that talk openly about it and have positive attitudes about it.  If some folks are having fun with peeing themselves I shouldn't worry too much about it being a life altering "problem".  I have gone through the shitty emotions and grieving over it and now I would rather just be happy.  Putting on a diaper with a funny design and feeling silly for a while takes me away from it being this macabre symbol of faltering health and disabilities.  IDK. That's just what i have gleaned from my journey so far I suppose.

[Slomo]

14 hours ago, Zombie_Turtle said:

Thank you, kindly.  My bladder issues have somewhat fallen down the priority list, but I am indirectly actively working on them.  Since a central nerve disorder is the culprit of the bladder spasms, I am taking medications that help improve proper nerve function.  The main reason was to help alleviate the nerve pain that I feel all over different places, at different times.  I have noticed some improvement with the spasms but there is still a reduced capacity and the thickening to the bladder wall.  It took a lot of years to get to where i'm at so I can't really expect a full improvement overnight.  I will not likely recover any capacity in my bladder, but i could reasonably expect improvement with pain (as I am told).  

The problem I (think) I have is my nerves in parts of my body will go from numb to overdrive.  When I am numb I will either be wetting myself without really having any signal and being able control, or I will not be able to urinate at all without brute force. The latter is usually after being dehydrated and in the evening, when I'm in overdrive I will have painful forceful spurts and depending on how hydrated I am, can be a lot. 

 

Honestly I just try not despair about it anymore.  That's why I appreciate folks that talk openly about it and have positive attitudes about it.  If some folks are having fun with peeing themselves I shouldn't worry too much about it being a life altering "problem".  I have gone through the shitty emotions and grieving over it and now I would rather just be happy.  Putting on a diaper with a funny design and feeling silly for a while takes me away from it being this macabre symbol of faltering health and disabilities.  IDK. That's just what i have gleaned from my journey so far I suppose.

It's good to hear you've found a way to stave off the worst of the problems, for now at least. But I implore you to talk to your doctor about having a plan in place for what comes next. Trust me when I say putting off a problem, will not make it any better later on. And when retention problems get serious, they REALLY bad in a hurry.

[Zombie_Turtle]

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But I implore you to talk to your doctor about having a plan in place for what comes next. 

Again with the solid advice.  Thank you!!

 

I had one urologist that wanted to outfit me with the Interstim device.  That was before my diagnosis.  I was informed I would not be a proper candidate.  You're absolutely right though, there is likely a next step I need to be planning for although I am not sure I have any clue what it is.  It's maybe the known unknown, and that spooks me enough to ignore it.  Pretty much why i am where i am today.  My experience with medicine up to this point has been that noting would show up on a test with one specialist, then something would look funny to another one who then would send me to another one who would would basically tell me they don't see anything and that I should go and see .....over and over.  I am so burned out.  After finally getting answers, although it meant I am disabled, there is relief and a sense of validation.  I have gotten to somewhat of a summit and I just want to look out over the side of the mountain for a while before I have to claw up to the next thing.  The treatments that I am undergoing now are somewhat helpful and it's not such a struggle to move my body around without ridiculous pain.  I have also spent a disgusting amount of money on Doctors in the last few years.  

 

I might be leaking oil, but my engine is running ok.   😀

[Russ]

I have moderate incontinence, I can wake up feeling fine at 0658. By 0700 I have to pee and sometimes leak with every step atowards voiding. It feels like I have to urinate volumes, only leave a bit behind. Nothing like I had to go.

[Latex Tom]

I’m a heavy wetter and require 3

[AUG168]

Most days light with bouts of moderate. There are days I can just wear a couple of pads. Other days when I'm feeling the OAB it's moderate requiring more protection. 
 

It all started with post matriculation, then leaking, and then OAB. I've tried meds and even the docs say I'm not ready for surgery. I'm content managing with pads and or pullups. Full time pullups is about where I am but when I can I try to use regular underwear with pads. I'm not giving up easily.

[Zombie_Turtle]

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I'm content managing with pads and or pullups. Full time pullups is about where I am but when I can I try to use regular underwear with pads. I'm not giving up easily.

There's probably something to be said for trying to stay dry, but there's no science behind it. If you're going to leak, you're going to leak.  For doctors or others in the community to say that you don't want to become reliant on diapers, and by wearing them it's somehow a detriment to your continence, I don't really think there's any proof to back up that conversation.  I use the bathroom when I can, but during the times when I can't, it's unavoidable.  I don't think there's any trick it.  Maybe I'm off...

[Scarth]

5 minutes ago, Zombie_Turtle said:

There's probably something to be said for trying to stay dry, but there's no science behind it. If you're going to leak, you're going to leak.  For doctors or others in the community to say that you don't want to become reliant on diapers, and by wearing them it's somehow a detriment to your continence, I don't really think there's any proof to back up that conversation.  I use the bathroom when I can, but during the times when I can't, it's unavoidable.  I don't think there's any trick it.  Maybe I'm off...

i think its a case by case thing .. and a balance if quality of life and the amount of stress trying to stay dry gets you, not that i discourage anyone who its tring .. i try to control my bowel as much as i can.