A Good Reference

[Dill_Pickle]

I found this after reaching the simon continence foundation through securecare's website. We have done at least one person some real good!

Man with a Neurogenic Bladder due to Marfan's Syndrome

Not sure how long this link will keep working, but the whole page makes decent reading.

Let me see if I can get edit this into a link.....

In plain text:

"http://simonfoundation.org/AboutIncontinence/my_story.htm#Man%20with%20a%20Neurogenic%20Bladder%20due%20to%20Marfan's%20Syndrome"

Dill Pickle

(No, I'm not incontinent, I'm only a DL...but my obligations as a human being come first)

[DIAPERPHANTOM]

Very good find, Dill_Pickle! Though I am not incontinent either, I found all the stories to be very informative and enlightening about wearing diapers. The reference to AB/DL was brief, but sincere. It's nice to know that we can have such a positive impact on the quality of life of another.

[Guest diamondback688]

great find...i thought the story under the neurogenic bladder one was kinda sad...she had to give up her horse, stop teaching, etc.

[lildiaperboy]

wow, that was a very interesting thing to share, and its greatly appreciated... The stories were very wrothwhile reading, its unforchante the way that some doctors act. I guess I am very lucky my doctor is wonderful; becuase he is kind, caring and excepting. I guess it speaks to finding the right doctor for you. And to make the best of what life throws at you and keep trying!

[cubictriangle]

Thanks for the link!

For prosperity sake im going to post the stories in the link incase it's lost.

If Admin feels they are to long please delete them, but I feel these stories might give some people hope and encuragement.

The Simon Foundation for Continence

Incontinence affects men, women, and children of all ages, races, and both sexes. Everyone has their own unique story to tell, and these are just a few. Please keep in mind that everyone's situation is different, and what worked for one person may not work for another. These stories are told by the individual with incontinence, in their own words.

<A name="Teenager Using Absorbent Products after Car Accident">Teenager Using Absorbent Products after Car Accident

Submitted by: Misty

I'm 17 years old and I was in a car accident at age 14. The accident left me with many internal damages which included my bladder. Since then, I have not been able to control my bladder. I am forced to wear diapers all the time and it is so embarrassing, especially at school. I used to cheerlead but now I am too embarrassed, although I am getting used to my new lifestyle and I hope that I can have surgery one day to fix it.

Gallbladder, Kidney Stones, and Incontinence

I've always had some bedwetting problems, but in the last few years they have become worse due to the fact that I have passed several kidney stones over the years, and it has affected my kidneys, and caused me to wet the bed more than usual. I have tried several different things, and none of them seem to have any affect on the bedwetting problem. So I too started wearing diapers to bed with plastic pants, and they offer better protection than the disposable diapers do. And just in the last couple of years I've ended up having to wear disposable brief's 24/7 on account of having my gallbladder out a couple years ago, and it's left me with some bowel problems, and at times when going or doing something, and I'm away from a bathroom, I have messed my pants.

Adult Man with Nocturnal Enuresis

I am almost 40 years old and suffer from adult nocturnal enuresis, the medical term for bedwetting. The following letter describes some of my experiences dealing with this disorder and my thoughts and feelings on the use of diapers to manage the problem. I think that some of my ideas might seem controversial, but I feel many people probably feel the same way but they're afraid to say so. I realize this letter is long-but I feel that many of these ideas bear repeating. I thought that by sharing some of my experiences it might help people come to terms with their use of diapers to manage bedwetting.

I think most people would agree that it's best to try find a cure for bedwetting as opposed to relying on a diaper-but not everyone can be cured of bedwetting. I have spoken to parents and have read about parents who in many cases have found disposable diapers to be more absorbent than "Goodnites" or pull-ups. I have also heard about situations where parents preferred pin-on cloth diapers and plastic pants for bedwetting due to the savings and absorbency levels. However, in most cases the children have resisted. You ever tried convincing a 15 year old to wear pin-on cloth diapers and plastic pants to bed? Trust me, it's not easy! I think achieving world peace would be easier! People need to realize that bedwetting is a very common condition, and that in some cases diapers are the best option. Every child grows at different rates-some walk sooner than others, some talk sooner than others, some learn to read sooner than others-why should a child's need for diapers be any different? We all know what the function of wearing a diaper is, so it shouldn't make a difference whether you're 2 or 102 - the purpose is still the same.

Unfortunately, when you mention the word diaper to most people the image that immediately comes to mind is that of a baby. Most people think that a diaper and plastic pants is something to be outgrown like a high chair or a bib (of course they make bibs for adults so even this image is wrong). How many times do parents tell their children-"Pretty soon you won't need diapers anymore and you'll wear regular underwear just like a grownup-we're so proud of you!" or "You're still in diapers-don't you want to be a big boy and make mom and dad proud of you?" How is this supposed to make a child feel? He or she already feels bad enough about wetting the bed but this just makes him or her feel worse. I think parents use this tactic in order to try to encourage their children to try to wean them from diapers and motivate them to achieve night dryness, but it's my firm opinion that this could make the situation worse. As I said before, children grow at different rates and some need diapers later than others-a person's maturity or being "grown up" has nothing to do with a person's bladder or need for diapers. According to this reasoning all the millions of people wearing diapers and plastic pants are babies. I also think that in some cases parents want to take their kids out of diapers as soon as possible because they feel it reflects badly on them-they feel ashamed about their son or daughter still being in diapers. Everybody is so obsessed with their child being perfect and keeping up with the joneses they forget about their child's feelings in the process.

Almost all of the books I have read dealing with nocturnal enuresis (There are exceptions-thank God some people have the courage to go against the grain) counsel against using diapers for bedwetting. In fact, one book had the following to say: "I've known parents that have kept their kids in diapers at night as late as 7,8,9,and even 12 years of age, but wearing diapers makes a child feel like a baby." The book also said-"Diapers are a symbol of babyishness." I thought that was a very ignorant thing to say considering the fact that many adults have to wear diapers. I can't understand where this prejudice against using diapers came from-if anything it's more babyish if you don't wear a diaper. By wearing diapers a child or adult is taking the appropriate steps and demonstrating the maturity to manage a health problem. Furthermore diapers by themselves don't represent babyisness - afterall babies can't clothe, bathe, or feed themselves. Most pediatricians and doctors advise against using diapers also, saying-"only babies wear diapers!" While I believe that a person should explore all treatment options before resorting to diapers, if all of them have proved unsuccessful, then diapers should be used. In fact physicians and pediatricians should encourage, not discourage the use of diapers if all other treatments have failed - after all it's much more sanitary and healthy (not to mention comfortable) wearing diapers as opposed to waking up in a flooded bed!

I don't want to make it seem that I think that diapers are the only way to go or that a person should just use diapers and ignore possible treatment options - that's not what I'm saying at all. I'm just saying that with some people and in some cases and circumstances diapers might be the best, preferred, or only option. As with everything else in life there's no such thing as a one size fits all solution. I also believe that if a person has fully considered all the treatment options available and comes to the conclusion that using diapers and/or plastic pants are the best method to use, he or she should not be stigmatized for that choice. Ultimately the decision to use or not use diapers should be up to the individual and his or her decision should be respected.

When I was growing up I tried medicines, alarms, and other methods to try to stop bedwetting but none of them worked. After many miserable nights of waking up in cold, soaking wet pajamas and bedding I asked my mom if I could start wearing diapers again. I was relieved when she said yes. They didn't have pull-ups or "Goodnites" when I was growing up, so I had to wear adult size disposable diapers to bed. They looked and fit just like the Pampers the babies wore with the tapes and elastic leg gathers so as you can imagine I got teased unmercifully. Still I didn't mind wearing them as it was only at night that I had to put them on and they made me feel much more comfortable and secure. When I was 14 my younger sister had some friends over for a slumber party. I had just diapered myself and was ready to go to bed when I realized I had to get something. Naturally when I walked you could hear me coming a mile away! My sister's friends heard the crinkling sound of the diapers under my pajamas when I walked. When I moved around in the room I heard them snickering. After I left they started giggling and they made the following remarks: "Did you hear that he's wearing diapers - he's 14 years old, he's way too old to be wearing diapers!" another said-"I wonder if he has to sleep in a crib or eat in a high chair!" Another incident happened when I was 16 and spending the summer at my aunt's house. I also wore pin-on cloth diapers covered with plastic pants to bed. None of my younger cousins had problems with wetting the bed so it was kind of embarrassing. My younger cousins saw my plastic pants hanging up to dry and made fun of my "baby pants." Another time when I was 15 I was at the beach and had to share a room with one of my older sisters. Her friends were also staying with us and were constantly in and out so it was impossible to be discreet about my diaper wearing. I had a stack of disposable diapers on the nightstand next to my bed. One of the girls picked one of them up and said-"Isn't your brother a little old to be wearing Pampers?" then one of the others said-"We'll take turns changing him!" then they all burst out laughing.

Why is that diapers are considered acceptable for the elderly, special needs children, or people with disorders such as cerebral palsy, multiple sclerosis, spina bifida, or Alzheimer's disease, but are not acceptable for older children and adults that wet the bed? This to me seems totally illogical-after all enuresis is a disease also and like any disease it should be managed. I had contacted Tranquility some time ago with an idea for a commercial for their "All Through the Night" disposable briefs but they never responded. Maybe they feel that an older child would be embarrassed about wearing a diaper. Of course with the negative image diapers have who can blame them? All the ads for pull-ups have the following motto-"I'm a big kid now!" The implicit (or maybe not so implicit) message or assumption is that only babies wear diapers.

I have some theories as to why some parents call diapers babyish. I believe that some parents call diapers babyish in an attempt to motivate their child to stay dry at night so that he or she can wear "adult pants like mom and dad." Of course we all know that the road to hell is paved with good intentions. I think that this puts a lot of pressure on a child and most likely will exacerbate the situation. If a child or adult feels comfortable using diapers to manage bedwetting they should be allowed to use them no matter how old they are-otherwise you do more harm than good. I've also heard a theory that if a child or adult uses diapers to manage bedwetting there's no incentive to stay dry-the diaper is viewed as a security blanket. While this could be the case with some people, I believe most children and adults don't want to wear diapers forever. I wear pin-on cloth diapers covered with plastic pants to bed and will probably wear them for the rest of my life. Although I feel more comfortable and secure wearing them (as opposed to waking up in a soaking wet bed) I certainly don't view them as a crutch-I view them as a tool to manage a health problem. A third theory I heard is that if you let a child wear a diaper you are sending a message that it's okay to wet the bed. Jeez! What type of reasoning is that? I think it sends the message that the parents will provide you with a garment to make you feel as comfortable as possible either until a cure is found or until you outgrow it. Another theory I heard is that the use of diapers and plastic pants to manage bedwetting for an older child or adult is degrading. Personally I think it's more degrading to sleep all night in wet clothes and bedding.

Diapers and plastic pants in my opinion should be viewed no different than wheelchairs, crutches, sanitary napkins for women, eyeglasses, or braces for the teeth. In fact many adults wear braces for the teeth but we don't stigmatize them like we do with older children and adults that wear diapers for bedwetting. I know with how people have been brainwashed this may seem hard to fathom, but many people might actually prefer to use diapers or plastic pants for bedwetting as opposed to medicines with potential side effects, alarms (which many people sleep through, can disturb a person's sleep cycles, and can frighten some children), or expensive and/or potentially risky surgical procedures. Sometimes the cure is worse than the disease. I personally have no problem whatsoever with wearing diapers and plastic pants to bed. There are people who suffer from painful, chronic, and debilitating physical and mental disorders. If all I have to do is sleep in cloth diapers and plastic pants a few hours a night I think I'm pretty lucky. As I mentioned many people are surprised (more like stunned) that a person would prefer to wear diapers to bed. What people don't understand is that it can be more distressing going to countless doctors which includes the embarrassment of discussing the problem in the first place), having numerous tests and procedures done, and the time consuming task of researching possible cures. With all the hassle and stress this entails it's no wonder that some people might prefer to wear diapers to bed-after all unlike daytime incontinence it's easier to conceal the use of protection. Plus the only people who know you're wearing diapers or plastic pants to bed are yourself and your loved ones. A person has to decide for himself to what extent a problem is causing distress. The same is true for a problem like bedwetting. If the problem is bothering them then by all means try to solve it, but if he can live with it then it's best to try and manage it as best as you can. That is why I prefer to wear diapers and plastic pants to bed. In a similar vein sometimes it's just best to let nature take its course. For example I knew a woman who tried desperately to cure her son's bedwetting to no avail. He seemed real upset about the whole thing. Finally she offered him some diapers to wear to bed and he seemed to feel better about the whole situation. He knew that most children eventually outgrow the problem and he didn't think it was a big deal. It turns out that he was more stressed out by all the constant effort and activity expended on trying to cure him than just letting nature take its course. As I said before a person has to decide for him or herself how distressing a problem is and then either solve it if it is bothering him or manage it as best as one can if it's not. I think that the best way to deal with an older child who is reluctant to wear diapers or plastic pants to bed is to approach him or her in a calm, warm, and loving way and tell them something along these lines: "You shouldn't feel ashamed about wearing diapers to bed-many older children and even adults wet the bed and many of them have to wear diapers to bed also. They wouldn't make diapers and plastic pants in your size if there wasn't a need for them-we think you'll be more comfortable and secure wearing diapers to bed."

I had a friend who was in a car accident who used diapers for a while. She told me that you use a crutch for a broken arm, well a diaper is a crutch for a broken bladder. Humor definitely helps in these situations. One time I told a female friend of mine that I'm going to have to start wearing a raincoat to bed and cover the bed with a tarp. We as a society have come a long way when it comes to many personal issues and problems, but an older child or adult wearing a diaper or plastic pants to bed is still taboo. We need to grow up! Unfortunately we live in a very unenlightened society. I suspect other cultures and societies still think in the same backward way when it comes to this issue. In my opinion the people who call diapers babyish are the real babies-they're not grounded and mature enough to realize that some people have medical problems and need them. People need to be more compassionate about this matter. It's time we all stop being so uptight and have a sense of humor about it! On that note I have to go-I have to buy some flood insurance for my bed! Like I said I realize this letter is long-but I feel it brings up many important points which many people might not have considered before.

Still Searching for a Treatment

After taking some one with me to the doctors they finely listened to me about my incontinence problems. After all the tests (I had done urodynamics and a cystocopy), they came to the conclusion that I have a sensitive bladder. My continence advisor, which I self referred to, reckons I also have

a small bladder. I have to wear protective undergarments 24/7. None of the tablets I've have tried have made any difference.

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Man with a Neurogenic Bladder due to Marfan's Syndrome

I first noticed urinary leakage in January, 1985, and simply changed my pjs and underwear. However, within weeks, I found myself changing my underwear several times each day, and staining my bed sheets. After my first accident, I panicked, went to my PCP, and was referred to the first of a series of urologists, none of whom took my situation seriously. The urinary pain began almost simultaneously with the onset of the incontinence, though the spasms were infrequent and not really painful; they were just bad enough to get my attention. I joined the Simon Foundation and through it discovered folks, whom I later discovered to be AB/DL, who patiently taught me much of what I would need to know to get through life as an incontinent. Though I am not one of their number, I owe them much.

The pain slowly grew in frequency and intensity through the later 1980s, and I was shuttled from urologist to urologist. They tried me on Ditropan and Detrol, which gave me intense dry-mouth, so that I inadvertently drank far more fluid than was advisable, with the resulting accidents. One doctor told his nurse to teach me to self-cath; however, my sphincters clamped shut, making catheter insertion impossible. Some of my most memorable accidents during these years involved external catheters coming unglued, once in my boss's car. In 1990, my cousin called me and told me that Marfan's Syndrome, a genetic disease, ran in our family, and that I should be tested. When I tested positive, my current urologist read the report, told me that it made sense, because I was dealing with a neurogenic bladder. He said I should keep up the good work, and sent me home.

Meanwhile, the pain was slowly growing in frequency and intensity. By June, 1998, my current urologist expressed exasperation with my complaints that Tylenol was no longer working. He put me under anesthesia and infused four ounces of saline into my bladder, whereupon it went into a "violent spasm" (his words) and squirted the fluid out at him. He had never seen a human bladder

behave that way before, did not know what to do, and charged me $45.00 to tell me that he was sending me on to a urological service at the University of Pittsburgh. The university urologist, one Michael B. Chancellor, was the first doctor who took me, the pain I was enduring, and my incontinence, seriously.

At first Dr. Chancellor injected Botox into my urinary sphincters, to disable them. However, the injections wore off after successively diminishing lengths of time. By spring, 1999, he had put me on morphine, which was the only thing that gave me relief from disablingly painful bladder spasms. I spent my days curled in a fetal position on my bed, bracing for the next bladder spasm, which, by May, 1999, were coming 4-6 times per hour, around the clock, and praying for my next dose

of morphine. Relief came in August, 1999, when Dr. Chancellor infused RTX into my bladder to destroy the offending nerve endings, and surgically destroyed my urinary sphincters. I am totally incontinent; however, the pain and the threat of reflux damage to my kidneys are ended, so I do not intend to complain.

Slightly off-topic: I also have Meniere's Disease. Meniere's is a disease of the auditory and balance mechanisms. I am bi-lateral, and need two hearing aids in order to function in public. Meniere's patients experience nausea, balance and walking difficulties, nystagmus (an eyesight anomaly), dizziness, vertigo, and tinnitis (ringing in the ear(s)), and collapsing and falling, which sometimes include unconsciousness. Meniere's has hospitalized me twice, the nausea and vomiting dropping my weight down to 110 lbs., which, for me, was the brink of starvation. I had to re-learn to stand and walk after one two-week hospitalization. Meniere's has enormously complicated the task of

incontinence management. Trying to wash and change when I'm walking like a drunk because my world is spinning violently; I know that the images my eyes are sending to my brain are not to be believed, and I must hang onto anything solid enough to support me in order to move from place to place, is about as much challenge as I care to face. The silver lining here is that Meniere's is

episodic, and I do have remissions.

If I live long enough, someday I will give the staff of a nursing home more work than they care to undertake. I dare not finish without thanking my wife, who has stood by me, even when I've stained our bed linens and our house and car upholstery. She watched Dr. Chancellor work on me. She took care of me when I was too far gone to care for myself, and she hired caregivers when she was

unable to assist me. She drove me to doctor's appointments when morphine would have kept me home, and she believed me when a succession of doctors told me that I had nothing to worry about.

-Carl

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Woman with Incontinence due to Injury

What a beautiful day it was. July 27, 1997&shy;, the sky a brilliant blue and, in spite of the dazzling sunshine, cool and delicious. It was my birthday and I was riding Adoro, my thoroughbred four year old gelding, sweet and wise beyond his years. We were making circles in the corral when he stumbled. He never fell (and neither did I), but he tripped on something and stumbled, brought to his knees for only a moment. I fell forward onto my saddle's high pommel (like the horn of a western saddle). As Adoro righted himself, I did too, but the damage had already been done. My impact with the saddle had destroyed my urethra and seriously injured my bladder. There was blood everywhere and, suddenly, I was incontinent.

Years later and much surgery later, I am still incontinent, though much improved. After the accident, without a urethra, I was completely incontinent. Now I have good days and bad, good nights and bad. I am still, years later, adjusting. Each year I become more comfortable with the new me. I plan my activities. I locate restrooms before they are needed. I wear absorbent padding so I am always ready for the unexpected. I would rather not be incontinent. But I know that there are much worse situations than my very manageable one.

The accident had a tremendous impact on my life. I would never be able to ride again, had to give up my horse who was the joy of my life, and I chose to retire from teaching (which I also loved) in order to heal and begin reconstructive surgery. Not fun. What I learned was that I had a lot of resilience, that I could start over and find fun even with a less-than-perfect hand. It has been difficult, because I am a "neatnik" and very fastidious about my appearance and hygiene. But I am "out there", in yoga class in all sorts of crazy positions, walking in the woods, and, until recently, substitute teaching. My husband of over 40 years has been tremendously supportive and understanding. He feels super protective of me, was super considerate to begin with, and even more than before, he has become my very best friend. We "keep on keepin' on". I wish I could give you a glorious "everything-is-OK" ending to my story, but that would be phony. Everything is mostly OK, with the exception of my relationships with my husband, friends, and family. They are SUPER OK. So I think that I'm doing fine.

-Davida

[Dill_Pickle]

Thanks for the link!

For ***prosperity*** sake im going to post the stories in the link incase it's lost.

Really??? We gonna make money from this? I think you meant Posterity.....I was just lazy with not pasting the text....

Dill Pickle..