Slomo

I not only prefer something that works, I demand it. And yeah, not enough fluff means a diaper won't wick or absorb enough. Usually resulting in a leak within 2 hours.

I blame insurance companies that only look at the price per diaper, and want that price to be as cheap as possible. Never mind how much it actually costs on a per day, or per month, basis. They force an inferior product on people, and manufacturers only look at total sales. When they see an inferior product "selling", they adjust their marketing to sell even more. Then doctors and patients see those adds and perpetuate the cycle.

Having abdl diapers has been a life saver. Both for my bank account and my sanity. And bonus, why not fun prints too.

On 4/27/2023 at 9:24 AM, Brian said:

@Slomo

In my mind, it is not the doctor that should be making decisions that say you should be out of diapers. A diaper is a solution to an issue, and the issue is made an issue because of the person that is dealing with it, not because the doctor sees you in a diaper. if you decide that you're going to use a diaper, it is not in the best interest of any urologist to tell you that you shouldn't be. sure, they can say that it is for temporary management of incontinence, But if you are like me, and have cerebral palsy, there's no way that my doctor is going to tell me that he's gonna cure me of cerebral palsy, so there's no discussion of dealing with this. We all know that in my case there is brain damage, and usually CP includes some sort of damage to neurological function. the difference in the severity of the damage would tell how bad you have the CP, but nobody is going to try to treat my CP by trying to cure it.

as such, since you can't cure CP you have to work with the condition that you're dealing with, and treat the symptoms of the condition. A symptom of a condition can be managed, and should be managed appropriately. It is well known that a neurological disease or neurological condition depending on the situation, should be dealt with with the understanding that it is neurological and it can affect your body in different ways. for example, for some reason my right hand will start to shake For no reason sometimes And I don't know how it happens and don't know why it starts to tremor, but it does, and I have to deal with that everyone every once in awhile, while but while there are things I can do to manage that problem when it occurs, I can't stop it from happening again.

If you're incontinent, you may have the ability to be tested to find out how bad it is, or to be able to determine what causes the problem. if you're lucky enough to have the ability to use medicine or medical intervention by taking drugs that help you manage it, then that is one thing this one, if you decide that you want to do something else, that's a different thing, but it should not be up to the doctor to try to get you out of diapers because they don't think it works period to have someone tell you that is almost like saying OK just go all over the floor whenever you feel like it! that is ridiculous And no doctor would tell you to pee on the floor!

additionally I have friends that don't have any bowel or bladder control at all! this is because they don't have working plumbing, so they have no way of being able to control the muscles in their butter or bowels, And it doesn't matter how much a doctor or urologist will tell you that they don't think diapers are a good idea, they are needed, and if you tell someone who has no bowel or bladder control because they don't have control of the muscles that control those functions, regardless of what you say it's not gonna matter. They have to do whatever they do to manage the situation, And if they do that, they have ways of doing it, it might be inconvenient, and embarrassing for certain situations, but those who have to deal with incontinence because of this type of condition, they deal with it the way they deal with it, because they have no other choice.

A urologist should never tell you that you should be out of diapers. Sure, if they have a way to be able to treat your incontinence, that's one thing, But the problem now is, what happens if the drug that they try to treat you with is worse that the condition that they're trying to treat? some people don't like the effects of the drugs they use, some of them just don't like the feeling that a drug causes, or a reaction that happens. some. sometimes I think a diaper is a hell of a lot easier to deal with than to deal with a medical treatment that requires drugs. this is just my opinion, because in my opinion I don't wanna take any drugs that I don't need, an incontinence is something that is normal as far as for people that have cerebral palsy or any neurologic condition, in fact I'm been lucky most of my life that I've been able to control my bladder and bowels, But as I age it becomes harder and harder, because I'm not able to move as fast as I used to.

I agree that anybody that decides that you should be out of diapers or tells you that you shouldn't be wearing them should be fired immediately! when I went to my doctor and I asked him for help, he did not say that diapers were bad, I told them why that I wanted them, told them that I had a neurologic condition, and that CP is known to cause certain subconditions, one of them being incontinence, because people have trouble controlling muscles, so they might not be able to control what's going on. as you age you might not be able to have as much control as you did when you're 25 as you do at 50 or 75, that's usually what happens.

Finally I believe that diapers are my choice and my solution to my problem. A doctor or some sort of professional can actually give me advice, but the thing is that's important is that I can make that decision whether to take the advice or leave it, because it's my doctor, my body, my health and my treatment plan that is being discussed. A professional doctor or nurse or LPN or CNA or whatever they are, their job is to help you, but not to judge You or to tell you that you shouldn't be doing something, unless of course it impacts your health like smoking for example.

Brian

Ha, yeah. Agreed. Try saying that to a few urologists though. It will probably fall on dead ears.

My underlying issue is/was neurological signals getting crossed, more physically so than mental as it resulted from a car wreck I was in. Not the same as you, but maybe somewhat adjacent to it. 

Hi. I'm finishing up a week long cruise right now. I'm functionally urine incontinent, and not once did I let that stop me from enjoying my vacaction. Pools and beach included.

Welcome, and agreed. Getting over that "what others might think" fear is a big step. But like you said, you life improves quite a bit afterwards.

I've been to a dozen different hospitals and surgery centers. Thankfully not a one of them was completely against diapers. A few nurses had wanted me to take it off when changing into that gown, but a little explanation of how incontinence works has always changed their minds. 

Depending on the surgery I've woken up without a diaper on. And some more nurses were hesitant to give me a new one. Though again, with some insistence I was able to get one. 

I've had WAY too many urologists over the decades. Some were absolute quacks who didn't even believe I had any underlying conditions. They literally told me I needed to get out of diapers, and could have done so if I just tried a little harder. Yeah....

I've also had a few that did understand I had urinary issues, yet still thought it was their duty get me out of diapers. Of course, to them that meant catheters, or a stoma (new pee hole in the belly button that also has to be catheterization all the time), or my favorite some medication they though would completely cure me.

All I can say, is if anyone ever ends up with a urogist like that. Fire them immediately. It will be faster and easier if you just start over by looking for a different urologist.

23 hours ago, Brian said:

just another quick question: is there such a garment that can protect you from both fecal incontinence and urinary incontinence when you're dealing with swimming? I know the idea is that you don't want to release in a swimming pool, so that is why you're wearing what you're wearing, but I was wondering if there is such a garment that you can wear that will take care of both, because I know that when you're dealing with fecal incontinence you're wearing a swim diaper to keep the fecal content within the swim diaper rather than within the pool.

If there is such an animal, I'd love to be able to find it, because I can probably get it!

Thanks!

Brian

The closest I've come to that is a swim diaper that tries to make a full seal with dual elastic bands at the legs and waist. It's supposed to let you wear a regular diaper underneath.

Except like I mentioned,  that just doesn't work due to the small of the back. So unfortunately no, nothing I've ever found.

Hi

I've went through a colonoscopy at 35 years old, and am about to go through it again at 46. I was mostly just urge incontinent back then, now functionally incontinent.

The prep: Not going to lie, that medicine tasted  land and nasty to me. Take it all at once if you can, but many docs will have you take half with a number of hours in between the second dose. No food from here out either. You will feel your stomach and intestines cramping, but it's not as bad as the worse cramping you've ever had. You will need to keep extremely well hydrated during this time too. Usually with Gatorade (no red or blue dies though), or some other electrolyte drink.

The cleansing: The first time it hit me wasn't bad at all. Just a normal bowell movement really. Get ready though, because you're not done. From here you absolutely will need to have quick access to a toilet, like under 60 seconds. With my urge incontinence I kept my diaper on, but also made sure the tapes were just loose enough so I could pull it down quickly. Pants definitely needed to be off too, though I guess wearing loose shorts would have probably been ok too.

From here, how comfortable is your toilet seat? The frequency and severity will get worse. No more painful or annoying than having run of the mill diarrhea, but enough you will not get very much warning. So again, being able to use the toilet quicky is going to be a must. And you can expect that to randomly happen for at least the next couple hours. For you, you may just want to set yourself up to stay on the toilet for 3+ hours. If not, then make sure you have 6+ diapers (with tall leak guards), and a bunch of wipes on hand l. At some point it will taper off to where only a little water will come out, then none even though you'll swear there's more to come. But you'll be cleaned out by then. Congrats, the worst is over.

The procedure: You'll normally head to the surgical center or hospital 8+ hours (or the next morning) after that first dose. You can opt to stay awake for the procedure, I chose to be knocked out just to make everything easier for everyone. So I can't comment on the details here. Basically, they put a LOT of gas in your out hole, then insert a snaking camera with a really long wire. The gas inflates the colon enough so they can easily see everything. From there they proceed all the way up, but short of your stomach. Then back out and release as much gas as they can. Or so I'm told.

Recovery: I went into the OR with my diaper on, and woke up without it in recovery. It's an uneventful recovery, and I didn't even feel sore anywhere. I diapered up, and waited. That's because they hold you untill you start passing the rest of the gas. And you will be letting them rip, which is normal and expected.

Follow up: This is a normal doctor's visit. They'll go over anything they find with you then determine if/what anything needs to be done then.

22 hours ago, Marks said:

I learned to not let it stop me from leading a good life. 

That's the best way of approaching it! I can't believe how often I've seen someone comment how diapers are the end of their social life. But in reality it's the exact opposite. Diapers enable you to get on with your life, to get out there, and remain social as ever.

I've tried the sosecure, as well as a bunch of others. Personally, I don't like swim diapers that try and "seal out water" as I've found that never happens. Even when on really snug, they simply can't make a seal at the top-back. That's because the small of the back is concave shaped. And water absolutely will seep in there. Worse still, they will hold that water in at the bottom and around the legs. Making it baloon up and sag when you get out. And a really snug fit there will make it more obvious you're sloshing around water with you.

There are two types of swim diapers I do like though. First is depends real fit, or adult swimmates (they are nearly identical in construction and absorbency, while real fit is cheaper but also falls apart faster).  Both should be good for an hour at best, and should contain minor messes long enough for you to make an exit. Though you will also want to wear regular swimwear over them, as neither will stay in place very well, and can be embarrassingly revealing.

The second type is a cheap (sub-$30) reusable pocket diaper. Most have a thin terry lining to make the pocket for an insertable pad. You can wear the pad on your way to the water, and discretely slip it out before going in. As well as discretely slip it back in after getting out. The terry lining helps hold just enough for making it to the water, or in between slides or other rides too. The "cheap" part is important though, because you actually don't want leak guards or a good seal around your legs. So when first getting out, quickly break the leg seal to let out any water that collected down there. And you should be OK for a little while, either before getting back in, or getting cleaned up and changed. And bonus, get the right swim diaper and you won't need an extra pair of swim shorts over it.

Yeah, they inject the botox into your bladder wall to paralyze it some and stop those sudden spasms. But some residue botox can still mix with the urine in your bladder, which then passes by your sphincter and paralyze that too. Or so I'm led to believe is what happened to me.

And from my own own experience with doctors; YOU need to research and learn every possible cause for your own symptoms, and their treatement options. Then take that knowledge to your doctor and let them figure out which diagnosis fits your symptoms best. And also try to guide them on which treatment you would like to go with.

If you don't, then that doctor is probably going to shoot darts at your problem, hoping to hit the bulls eye. Usually in the dark, without seriously trying, and with using some other medication as the dart. Sadly, if you want real results you usually have to take the lead, because most doctors are just "practicing" medicine, not "performing" medicine.

I also went the botox route, it's basically a bandaid for a deep gash. For me, it did almost completely eliminate my urges for about a month or two. But it also eliminated my sphincters ability to open up and let me pee. The two times I tried it, I quickly ended up with an indwelling catheter for a couple of months.

Though I've also read it has helped others reduce or nearly eliminate their urges, without bad side effects. It's worth noting though, urologists will only do the procedure once every three months, yet it seems to never lasts that long. Also, each subsequent botox injection will be slightly less effective than the last. As your body slowly adapts an immunity to it. Some people can go several years where it still makes enough sense to get it done, but seldom few get more than that.

So if offered botox it's usually worth trying at least once. But even if it works for you, I'd suggest still looking for other long term solutions.

Of course you can, and should. Your primary care physician should know the big picture of everything that effects your health, incontinence included. The don't necessarily need to know all the details, but should know enough to look out for medication interactions, and also be able to refer you to a special urologist.

I sit at a computer all day, in a private office, and draw nothing but lines. (If viewed close enough, a circle is made up of a bunch of short lines that each connect at a small angle). Text is nothing but lines too. My particular way of drawing lines is called electrical engineering.

I am functionally, urinary incontinent. And I wear a premium diaper that I can trust will not leak for 12+ hours (Crinklz). I change in the morning before I go to work, and usually don't need to change untill well after I'm home and it's close to my bed time.

For the few times I need to change while at work, I'll go to my car and grab a spare diaper. Take it in hand to our small restroom, and change in the one stall we have. My old diaper then gets tossed into the one trash can we have (used mostly for paper towels).

I reside in the spiral galaxy we call the Miky Way. It's right next door to another spiral galaxy we call Andromeda. And one day out two galaxies will collide, but not for a long time though. Well look for about 3/4 the way to the tip of the smallest spiral arm, and about 1/2 the way out from the center. We call this short spiral the Orion spar, and that's where I'm from.

Not close enough, ok in that area you'll find a medium sized, medium aged, white star. We call it the Sun. And the 3rd planet in orbit of the Sun is where i'm located. We call it Earth. Though some of my people believe it is flat, it is indeed round-ish just like every other large body of mass in the universe. You'll know you've found it when you see the blue atmosphere. Formed from all the water that covers 2/3rd of the surface. And looking at our white Sun, through our blue atmosphere, makes the Sun look yellow. Or even red at first or last light.

I live on one of those land masses. Look for our biggest ocean of water, we call that the Pacific. To the east (direction the Sun rises at first light) of that ocean is a big continent of land mass, we call the America's. Now, get a small magnet and float it on water or hold it from a thin string. Where the positive side points is what we call North. I live north of where that land mass gets smallest. And also north of where the land is very dry, which we call Mexico. This northern land we call North America. And also as far east as you can go before coming to our other ocean, we call the Atlantic. And this area of North America we call Florida.

Still not close enough? OK. There are 7 very large cities in Florida. Cities are places with many tall building, all very close together to each other. Of those 7, I'm at the north-east one. You'll know it when you see a big elliptical road going all around the city. It also has a big river of flowing water running mostly through the center. This river also flows north, which is the only one in all of the North America's that flows north. And this city we call Jacksonville.

But that's as close as I'm going to tell you. If I gave you any closer to my exact location then those weirdos who think our planet is flat will find me too.

Too Long/Didn't Read (TL/DR) all that. I'm from Jacksonville, Florida, North America, Earth, Sun, Orion Spar, Milky Way Galaxy.

I put in my chronolical age (46), but that doesn't match my biological age (about 66).

Now to explain, I'm a time traveler. Wait no. Aging and healing are directly linked. We known that out cells can only multiply and divide a certain number of times before before we die of old age. We also know that healing from major injuries require our cells to multiply an unusually high number of times. And that literally robs from our cells end of life. It literally robs how old we will be able to live.

Though a better way of looking at it is conversely so. The effects of aging can be seen and verified in those who have recovered from major injuries. Often right after thay have healed. Such as having aching joints, feeling the barometer change, not being able to do what you used to, etc, etc. All normal ailments for those in an older age group.

In 1996 I was 18 years old when I got into a bad car wreck. But in just 5 years of healing and rehab I could just feel it. I had aged 25 years in that time, if not more. I even had the same ailments as my parents, and other people 20 years my senior. And while I'm still shooting to hit 80 years old one day, that would be like someone healthy hitting 100.

10 hours ago, Zombie_Turtle said:

Slomo: Cant thank you enough for taking the time to write this.  Especially since what you described about your symptoms sound quite similar to mine.  I was informed by a trusted neurologist recently, that this procedure wouldn't be very effective for me, but I still had this little bit of wonderment about it.  

 

John, to your point: the Urologist that I saw (who also was to do the procedure) sold it as a miracle.  I would have been disappointed if I would have gotten it done at the time. 

 

There is a lot of information on it in google searches but if I peel back a few layers and read into personal experiences of folks that have tried it, or even read some of the finer print it becomes less glamorous.  It can work amazingly well for certain candidates.  The pool gets much smaller when you start examining the symptoms vs effectiveness.  If the initial claim is 95% improvement, but due to someone's personal  conditions only derives a 30% improvement, is it still worth the effort? At that point would other treatments be similar in effectiveness?  

I'd say IF you are experiencing very painful urges, then even a 30% pain reduction just might be enough for someone to still get it done, even though it likely won't eliminate this urges or get you out of diapers.

It's a tough call to be sure, but do think twice in getting it done if you might also be dealing with other underlying issues. Such as I was with my neurological dyssynergia. 

And also note, the ONLY way to completely get rid of bladder urges is to prevent your bladder from filling up. Though there are a couple of options to do so. Such as an open stoma (new pee hole at your belly button that will constantly leak), or obliterating your internal and external sphincters via many sphincterotomies, or if you can convince a urologist to do it, a total sphincter-ectomy (go in through the skin and micro-surgicallally remove both the sphincters in one go.

Hi. Absolutely! Just knowing you're not the only one in the world dealing with something goes a long way in helping. And you're not alone.

Hi. We have a couple of threads along what your looking for, but don't hesitate to make a new one if you have any other questions.

33 minutes ago, Sean Burge said:

I just wanted to introduce myself my name is Sean and I have wetting problems since the age of 18 due to being hurt 

Well, you're in good company then. I can say the same, as well as welcome.

Got anything on your mind? Post it in a thread and well try to help.

@Apache and @Brian beat me to it. I was going to mention almost the same things. Try going before bed, every night, and for at least a month. Not only will doing so help reduce the likelihood of a mess, but eventually you might be able to re-train your natural body rythem to go before going to sleep. It might solve your issue completely. Though even if not completely, it sounds like even a little less mess would help you at night. Any as mentioned, a full night of rest is more important than waking up eqrly and having to deal with changing.

Also know your intestines are quite long, and for most people it takes 12-18 hours for food to fully pass through their digestive system. And that your system is also triggered to move your bowels more after eating. So really, you should be limiting how much you eat for breakfast and lunch, in addition to not eating anything a few hours before going to bed.

A breakfast high in fiber will also help make things more....predictable at the other end. I have just 1.5 cups of plain oatmeal in the morning (with local honey for tast and allergy control). Followed by just one piece of fruit for lunch. In this I'm fairly consistent in needing to use the toilet about an hour after waking. Even when I have an IBS-D flare up.

As for the overnight leaks, that usually means you need to be using a better diaper. What brand are you currently using? And does it have a high rise in the back and with tall leak barriers along the legs? Have you also considered using a diaper cover too? With the right protection leaks should be a very seldom thing, if ever.

Here's a surgical procedure I underwent to try and eliminate my urge incontinence and neurogenic dyssynergia blockage.

First I had a short surgery to implant some wire leads on my sacral nerve. It was a tiny cut on my lower back, and it had to be done while I was awake. This is because you need to able to tell them when they activate test the leads, and if you can feel it or not. Once that was over I opted to be knocked out so they could finish up the surgery.

After that when you're in recovery they connect the leads to a test device. About the size of a deck of cards with a 9 volt battery. You turn it on and start fiddling with the settings and intensity. Over the next 2 weeks they have you dial in those settings for what works best to help control any urges or misfiring from the sacral nerve. The idea is it will act as a sort of pacemaker for your bladder signals.

If all goes well, they have you return for a finish up surgery to have a custom programmed interstim device implanted (again from your back, and a out the same small size as a pacemaker). It's battery is supposed to last 10+ years, and is supposed to eliminate any bladder problems, thereby allowing you to live diaper free.

I have only see one partially successful implant on someone, and for them it only helped reduce their urges not eliminate them. They still had to wear a diaper, but considered it a success as it did reduce their intensity and pain.

For me, even that didn't happen. The 2 week test turned into 3 weeks of to what I akin to Chinese water torture. The electrical impulses started out very well tolerable, but even with the Interstim rep changing the settings and dialing it down, that thing got worse and worse over the days. It went from tolerable to slightly annoying, to uncomfortable, to slightly painful, to I couldn't tolerate the constant electrical shock.

I then had to insist they remove the implant, which of course took another surgery. And I'm sorry to say, but after that my neurological blockage got much, much worse. I started have to use indwelling catheters, long term, because of that device. And eventually had to have both my internal and external urinary sphincters removed. But that story I've already posted in another thread.

I'm wondering, what type of incontinence do you have, how severe would you rate it? And, have you ever taken a medication that significantly helped reduce it? Maybe enough you were able to stop needing diapers (even for a time)? And of course, what were your side effects, if any?

I've probably been on every type of medication that's even remotely associated for bladder problems. No joke. And nearly all of them had little to no desired effect on me. With most of them having side effects from mild to severely worse than what they were trying to eliminate. My biggest issue was neurological, so it's no wonder.

Myrbetriq did help alleviate my painful urges some, but it never came close to reducing them enough for me to make it to a restroom before using my diaper. Nor did it help with my neurogenic dyssynergia blockage. I had mild dry mouth from taking it, but never considered that a hindrance. 

Oops, posted that last reply in the wrong spot.

The best diapers are all going to be plastic backed. You'll want a higher rise in the back and front, closer to your actual waist line (near the belly button). This way you'll get a better seal around the top, and even if it's a lot you won't have to worry about leaks over the top. You'll also want tall standing leak guards, with a snug fit all the way around your legs.

My opinion, but Betterdry (or any of their Crinklz variations) fits that bill the best. Everyone's body shape is different though, so you're best off getting samples or a single bag from several different places. Test them under several different conditions, and narrow down what really works best for you.