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I have been reading many of the KosAbility diaries here recently that have a great deal of familiarity to me.  Diabetes: A Love Story, Bedwetting, Bursitis, Peripheral Neuropathy and even Menstruation Misery .  All have aspects that have entered my life over the many years.  But there is one diary that I have not seen, one that most people don’t want to talk about, the Final Taboo, incontinence.  I say the Final taboo because it affects millions of people daily, it affects 1 in 3 women in their lifetime, 1 in 5 men, but nobody wants to talk about it, not even to their doctors, friends or spouses.  

KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic.  There are two parts to each diary.  First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.

When we were born, our parents took us home from the hospital and immediately began the ritual of diapers.  For the first few years of life, our young bodies are not able to control our waste removal process, so it just comes out.  Our parents put us in diapers to keep the urine and fecal material contained.  Babies are effectively incontinent and nobody thinks twice about that.  But as children get older, the parents want them to take on more responsibilities, one of the first is to gain control over their bladder and their bowels.  Parents use various techniques to potty train their children, the most common are indoctrination and intimidation.  

•    “Only babies wet themselves”.  
•    “Be a Big girl so you can wear Big Girl panties”  
•    “Accidents will happen, don’t be a baby”.
•    “Only babies wear diapers, you don’t want to be a baby, do you?”  
I think you get the picture.  The roll of a parent is to get their children potty trained before they enter kindergarten, hopefully much sooner.  For the rest of their lives, these children associate losing control of their waste products as babyish and shameful, mostly due to this early indoctrination.  Most of these children grow up with the ability to keep control of their bodily functions, but some don’t.  I’m going to talk about the ones that don’t.

When I was 4 years old, I very distinctly remember wetting my pants at home one day.  I know I was potty trained.  I know I wasn’t lazy, it just happened suddenly.  I was scared.  I didn’t dare tell my parents, I’d probably get spanked.  So I took off my underpants and threw them away in the garbage, never to be seen again.  The pants I think I hid, I don’t specifically remember, but I do remember the fear I had letting anyone know what had happened.  When I started kindergarten, I was a little scared at first, but soon I felt confident that everything was going to be fine until one day during nap time, I wet my pants.  I don’t know how it happened.  I couldn’t remember ever wetting the bed at home, so this was very strange.  Luckily, my pants were dark enough that the teacher didn’t realize what had happened so I spent the rest of the morning in urine soaked pants.  Again I came home and hid the pants.  I didn’t want to tell anyone what had happened.  I was embarrassed, shamed, big boys don’t wet their pants.  More incidents happened over time, each as scary and shameful as before.  Once when I was 12, I really lost it.  I not only wet my pants, but I did the other one too.  Shame on me.  In many ways, it was torture.

I won’t bore you with details, but from that first wetting episode, I continued to have small accidents at home, at school, at night.  Not every day, sometimes not every month.  Most of the time, I didn’t think about having an accident.  Then suddenly, with no warning, I’d wet my pants.  I went through grade school, junior high, high school and college with my secret, I told nobody and I don’t know that anyone knew of my problem, but I sure knew.  I was too embarrassed to say anything, even my parents, surely not a Dr.  In college, the situation seemed to get worse, no longer were these little accidents, I’d suddenly let loose unable to stop the flow.  I was mortified anytime this happened.  It was during this time that I learned that black pants hide many things.

Life went on and soon I got married to a wonderful woman.  We were very happy, but I had this deep secret that I didn’t wish to even tell her.  I soon was not given a choice.  One night, I woke up in a wet bed.  I hadn’t wet the bed since school, but there it was.  There was no hiding it.  Over the course of a year or so, it happened again, and again.  My wife was getting sick of waking up in the middle of the night to change sheets (I did the changing and washing, she found a spare bed).  I had to tell her the whole story.  She insisted that I see a Dr.  I was about 26 years old.  I was scared.  I didn’t want to talk to the Dr. about this.  He’d think I was some kind of baby.  I was ashamed, but my wife was right, I did need to see a Dr.  So I got up the courage and went.  Amazingly, the Dr. didn’t seem to make a big deal about it.  He didn’t laugh at me.  He scheduled me for a whole bunch of tests: X-rays, urodynamic tests, catheters up my Yoo-hoo, you name it.  At the end of the day, they found nothing.  All the tests were normal, no problem.  At least I knew that I didn’t have cancer or something bad, but it didn’t do anything to help me.  I didn’t spend much time questioning the Dr.; I just wanted to run away.  

The problem didn’t run away.  I would go for months without a single leak.  I would totally forget that I had a problem and wham, with no warning, a flood.  It happened while I was driving the car, it happened eating dinner at a restaurant, once it happened at my friend’s wedding.  I didn’t know what to do.  I thought that I was the only person in the whole world that wet his pants.  I felt so ashamed.  You cannot imagine the stress this put on me.  It seemed the more stress, the more chances of wetting myself.  It was catch-22.  

Then one day while walking through a drug store, I spotted a package of disposable adult diapers.  I had never seen anything like this before.  Up to this point (1980s), June Allison hadn’t begun her “Depends” commercials, so incontinence was a subject so taboo that nobody talked about it.  But here they were.  That was the first sign that other people might have a problem like mine.  My Grandpa was facing incontinence problems too, but he wasn’t as good at hiding his wet pants.  They moved him from assisted living facility to the nursing home.  I learned that most of the nursing homes were populated with old people that couldn’t control themselves any longer.  So diapers were now for babies and old fogies that were in final stages of life.  You get born incontinent, some die incontinent, kind of like the riddle of the phoenix.  That really didn’t make me feel better.  Not only that, but my problem was so sporadic, a diaper really wasn’t going to help me.  I was 30 year old and definitely not ready for the nursing home crowd.  But I was not a baby either.

One day I woke up in a wet bed.  I cleaned up as usual and went to work.  A few hours later, I felt wetness down there.  Horror of horrors, I had wet my pants again, at work!  I managed to get out of the office and went home to change my clothes.  Went back to work, went to lunch and mid afternoon, I wet my pants again.  I had no warnings.  This was very strange and very scary.  I managed to tell my boss that I felt sick and was going home.  I don’t think he realized what had happened, good old stealth dark pants.  At home, it happened again.  I had no control.  I decided that maybe those diapers at the drug store weren’t such a bad idea after all.  It really took much longer to figure this out, but I’m trying to keep the pace of the story from being too repetitive.  I got up the nerve to take my large package of adult diapers to the check out stand.  I was sure everyone in the store was laughing at me, the clerk surely would.  My heart was pounding.  I don’t know what scared me more, the worry of wetting my pants again or the worry of people laughing at me.  

The next day, I went to work wearing a diaper.  Talk about low self esteem.  I had to smuggle in spare diapers so that when I needed to, I could change in the restroom.  Mid morning, I needed to change.  Going into the restroom was scary.  I waited for everyone to leave before beginning to change.  Disposable diapers are noisy.  Sometimes, I’d be half way through changing and someone would come in. I would freeze.  I feared that someone would figure out that I was wearing a diaper and laugh at me or worse, tell everyone at work.  This was a terrible time in my life.  I didn’t know what was going on and as far as I knew, I had a bladder of an Alzheimer’s patient.  After a few days, I’d get a feeling back that I needed to go to the bathroom and I was able to stop wearing diapers.  That would last sometimes for several months, sometimes a few weeks, and then a new wet cycle would start again, usually with me wetting the bed.  Again, I won’t bore you with details, but this went on for 20 years, off and on, sometimes worse, sometimes not.  

Then one day I applied for life insurance.  I had a growing family and it seemed like the right thing to do.  The agent scheduled an in-office “mini-physical” where they ask you a bunch of questions, take your blood pressure, weigh you, and take a blood sample.  A week went by as the blood tests were run.  My agent called to tell me that he couldn’t write a policy on me because I was an out-of-control diabetic.  That was a complete shock.  I don’t recall being aware of any of the symptoms of diabetes, no family history, nothing.  I went to my Dr. and sure enough I was diabetic.  So we began the task of getting my blood glucose (BG) under control.  That was a whole education process all by itself.  There was no internet at the time, so there was only the stuff in books at the library or the encyclopedia and what the Dr. told me.  I managed to get my BGs in control.  At this point, I had no clue that there might be a connection between my diabetes and my incontinence.  I hadn’t talked to my Dr. about my incontinence (not the same Dr. as the earlier one), I was too scared, I just suffered in silence.  

It is time that incontinent people be allowed to come out of the closet and have no fear of being ridiculed.  When you have little or no control over the body’s spigots, there is no telling what will happen.  That is the worst of it all, the unknown.  It isn’t a joke.  You may discover that it will happen to you some day.  I hope not. In a few weeks, I'll continue this diary to discuss how chronic illness can cause problems that we don't like to discuss.  You don’t win in this game, but at least people can learn to talk about it without shame or embarrassment. Please!  The floor is yours.  Don’t pee on the carpet.

If anyone feels they have questions that need to be kept private, I’ll response to private msgs in total confidence.  I respect that many people have not made the transition to complete openness.  

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Comment Preferences

  •  Moderator's Comment (13+ / 0-)

    Still plenty of open dates.

    Upcoming Wednesday Diaries

    Nov   9  Clytemnestra
    Nov 16 Kitsap River
    Nov 23
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    Dec  7  dangoch Part II
    Dec 14
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    ulookarmless is the moderator of KosAbility’s Wednesday diaries and maintains that schedule. If you’d like to sign up for an open Wednesday, send me a private message or email me at ulookarmless[at]gmail[dot]com.

    Upcoming Sunday Diaries

    Nov   6  indiemcemopants
    Nov 13
    Nov 20
    Nov 27  HUGE SURPRISE!
    Dec  4
    Dec 11
    Dec 18
    Dec 25

    Nurse Kelley (KelleyRN2) is the moderator of KosAbility’s Sunday diaries and maintains that schedule. If you’d like to sign up for an open Sunday, reply to this comment, send her a private message, or email her at KelleyRN2[at]gmail[dot]com.

    The content of the KosAbility diaries is important to many folk who depend on the exchange of information and ideas about their struggles with real life-changing conditions. The moderators of these diaries will not tolerate rude, disruptive, off topic, and/or threadjacking behavior. If in doubt, read our mission statement in the diary.

    Peace

    CJ

    Some people make you want to change species

    by ulookarmless on Wed Nov 02, 2011 at 02:08:32 PM PDT

    •  Still working out the details (3+ / 0-)
      Recommended by:
      ulookarmless, KelleyRN2, second alto

      but sometime after the first of the new year, I might be able to tackle a diary (may be a two parter) on special needs trusts for disabled children/adults. Might be able to provide some good information for those who have disabled children or siblings that they want to make sure are provided for.

      Now to try to end the wars we ask our gay and straight soldiers to fight. -- Chris Hayes (modified)

      by Cali Scribe on Wed Nov 02, 2011 at 10:36:38 PM PDT

      [ Parent ]

  •  A subject usually not discussed (21+ / 0-)

    in "polite circles"

    One which affects more people than we know.

    This is the first part of a two-part diary that will open many eyes.

    Thank you dangoch for a great piece!

    Peace

    CJ

    Some people make you want to change species

    by ulookarmless on Wed Nov 02, 2011 at 02:12:50 PM PDT

  •  Blessings to you (19+ / 0-)

    after a series of rectal issues, I spent some time wearing diapers because of bleeding.  By that time, I'd had three or four open heart surgeries in my 20s, a couple of them had numerous, near-fatal complications, but THIS was so much more emotionally devastating.  Thanks for speaking the unspeakable - it gives people courage to face it.

    Hoping you find the answers to your mystery.  If your situation is not connected to physical health issues, you may want to see if hypnosis is helpful to you - our bodies have their own smarts, and sometimes can be reasoned with for unaccountable actions.

    'Give away to the rich and punish the poor for the extravagance.....crazy' --LaFeminista

    by MsGrin on Wed Nov 02, 2011 at 02:26:00 PM PDT

  •  Faulty plumbing is something I know of! (17+ / 0-)

    Thanks for the post! There was a great film, "Mister North", directed by the son of John Huston, Danny, with Robert Mitchum playing the part of a man stricken with incontinence. Well worth watching.

  •  Thank you for sharing your story, dangoch (19+ / 0-)

    KosAbility has a wide audience. I can safely promise you that at least one person (and probably several people) will read your diary with a shock of recognition followed by a wave of relief that they're not alone. They might not comment here, but their lives are better because you were willing to share your story.

    It's always important to seek medical attention for incontinence. The cause for some can be traced to a problem in the spine, as well as diabetes or the more usual suspects, faulty plumbing.

  •  Many visitors to this diary already (11+ / 0-)

    Almost 7 visitors for every commenter, very high ratio

    Many people interested in this subject

    Peace

    CJ

    Some people make you want to change species

    by ulookarmless on Wed Nov 02, 2011 at 02:52:44 PM PDT

  •  due to severe spinal problems I'm unfortunately (15+ / 0-)

    heading there myself....

    So far, thank Ghu, minor because as you say, it is embarrassing as hell to even talk about.

     So far I'm lucky in that it's nothing more than the occasional inability to stop urinating, the dribbles, and even worse from a physical standpoint, the inability to start to urinate even though needing to bad and then inability to empty my bladder completely requiring on a bad day 5-10 times a night getting up to try to piss and be done with it....

    I was really hoping there would be a good surgical solution but I got a very discouraging call from the neurosurgeon today.

    A month out to get to see him and that tells me there's not going to be much he can do if anything about the thoracic cord compression.  If he could he'd have me in surgery already, this guy moves fast if he can help as the faster the compression is relieved, the better the odds of regaining function.  My first surgery I was on a table within a week of diagnosis.  

    His nurse who called me today to schedule me said it was a very complex problem and when I replied "so this means I'm just fucked?" was honest and said "yes, no sugar coating, you're fucked".....Oh Joy.... and as embarrassing as the coming incontinence is the worst part is I'm losing my legs and can feel them getting worse by the week....

    My first back surgery, a double laminectomy / discectomy at L4-5 and S1 was for a drop foot.  The surgery was a success I got my foot back and 7 good years...Since re-injuring and being unable to work, I've been fighting the damn SSA for disability with no luck so far which has wiped out almost everything I had owned except my tools and collectible glass....those will have to go soon if I can't get on SSD.....I can't get SSI as I have too many assets  (max of 2000 dollars worth allowed) so I live on about 500 a month and am getting so tired.....I could get SSI if I give up everything I worked my ass off for so I'm sufficiently poor and humbled with nothing nice left to bring a little joy.

    Sorry to ramble, this one just hit a cord ...heh...pun semi intended

    I hope you have good results with your Diabetes treatment.  Thanks for the space to vent, I almost always read kosability but rarely comment.

    Vaya con Dios Don Alejo
    I want to die a slave to principles. Not to men.
    Emiliano Zapata

    by buddabelly on Wed Nov 02, 2011 at 02:55:32 PM PDT

    •  I'm sorry to hear about your back problems (11+ / 0-)

      Spinal injuries are one of the leading causes of incontinence, especially the lower back, tail bone area.  That is where the nerves go to the bladder and bowel.  It is good that previous surgeries were able to help you out for awhile.  I know that feeling of impending doom :)  My incontinence is definitely getting progressively worse.  At some point, I will not have any control, or at least that is where it seems to be heading.  Have you tried catheters?  I cringe thinking about it, but I talk to people all the time that get great relief from cathing once or twice a day.  It is especially necessary if you have urine buildup to the point of overflow.  I've heard that people with that problem can have huge bladders and they can't feel anything down there and they need to cath to get rid of it.  So far, retention is not my problem, but who knows.

      "War is Peace, Freedom is Slavery, Ignorance is Strength", George Orwell, "1984" -7.63 -5.95

      by dangoch on Wed Nov 02, 2011 at 03:11:00 PM PDT

      [ Parent ]

  •  I have worn diapers for years. (11+ / 0-)

    I am 75 and have had an enlarged prostate since I was a young man.  I got tired of feeling wet all the time.  These keep me comfortable.

    The only remedy I know is ejaculation, believe it or not.  My doctors "prescribed" it It works for a while as does a steady dose of Ibuprofin in between.

    You know the joke about the guy with prostate trouble who went to his doc?

    His nurse took him to a room then disrobed and proceeded to have sex with him.  As he was leaving he saw a partially opened door with a guy looking at a girlie magazine and masturbating.  He asked the nurse about this and she explained the difference in health insurance policies.

    I apologize if what I have written is offensive, but it is life folks!

    An idea is not responsible for who happens to be carrying it at the moment. It stands or falls on its own merits.

    by don mikulecky on Wed Nov 02, 2011 at 03:51:46 PM PDT

    •  You need a sense of humor about these things (9+ / 0-)

      I had a prostate infection many years ago that probably didn't help me out but so far the urologist doesn't see that as an issue.  He did want to install a new valve and a new pump down there, one to stop the urine and the other to get me "long".  I've had serious ED problems for many years and Viagra and that ilk doesn't do me much good.  I did have a test at the urologist where he injected something into my penis and I had a hard on for 3-4 hours.  Now I know what they are talking about in those commercials.  It is very uncomfortable, not funny like most comedians would like you to think.  But I suspect there are few clean jokes related to erections and incontinence.  I wish I knew a few more.  I must have the magazine insurance, but I did have a very nice young nurse help out when the doctor made a tour of my bladder one time.  She got right up there and personal, but not like in your joke.

      "War is Peace, Freedom is Slavery, Ignorance is Strength", George Orwell, "1984" -7.63 -5.95

      by dangoch on Wed Nov 02, 2011 at 04:01:57 PM PDT

      [ Parent ]

  •  Sorry, I must leave early today (8+ / 0-)

    I look forward to the second installment

    Peace

    CJ

    Some people make you want to change species

    by ulookarmless on Wed Nov 02, 2011 at 03:59:01 PM PDT

  •  Wow. (9+ / 0-)

    What a hard condition to have to deal with. I am so glad you feel safe talking with us about it. The only condition at all like this that came to mind as I read was narcolepsy.

    "This is about the human heart, and if that sounds corny, so be it." -- Keith Olbermann

    by allergywoman on Wed Nov 02, 2011 at 04:07:19 PM PDT

    •  The story gets worse, but you have to wait (9+ / 0-)

      There is no easy way to explain stuff like this in a short diary.  

      As for conditions, narcolepsy is definitely not one of mine.  The good thing about incontinence is that it doesn't cause much physical pain, quite the opposite, you wish that there was some.  It also doesn't physically affect your ability to perform.  The big problem is psychological.  I*'d much rather be incontinent than have narcolepsy or epilepsy.  Both would limit your ability to do things like drive and attend to daily life.  Incontinence does similar things, but it is mostly in people's minds.  There is nothing worse than hearing a little kid say, "Mommy, that man wet his pants".  Incontinence is not a disease, it is the result of something wrong, which in many cases can be fixed and if not fixed, dealt with in a non-embarrassing way.  It just makes life interesting. :)

      Thank you for reading.

      "War is Peace, Freedom is Slavery, Ignorance is Strength", George Orwell, "1984" -7.63 -5.95

      by dangoch on Wed Nov 02, 2011 at 04:15:17 PM PDT

      [ Parent ]

  •  Most women deal (8+ / 0-)

    with stress incontinence, especially after having children.

    When I have a cold, I make sure that in my bag I have a tissues for my nose, and pads for when I cough!

    A little tender courage at that rare right instant, and things might well have turned out differently -- Ken Kesey

    by Frankenoid on Wed Nov 02, 2011 at 05:14:09 PM PDT

    •  That can be fixed in most cases (2+ / 0-)
      Recommended by:
      Wee Mama, KelleyRN2

      kegel exercises can strengthen the muscles down there to minimize stress incontinence.  
      Mayo Clinic

      "War is Peace, Freedom is Slavery, Ignorance is Strength", George Orwell, "1984" -7.63 -5.95

      by dangoch on Wed Nov 02, 2011 at 05:58:11 PM PDT

      [ Parent ]

      •  Maybe. Kegels help, but they're not always enough. (4+ / 0-)

        However, for another comment from the distaff side in terms of a (possibly) missed diagnosis: What I thought was related to "stress incontinence" (having had two children myself) may well have been symptomatic of my uterine cancer--either the excess weight of my tumor-enlarged uterus on my bladder, or an actual vaginal discharge related to the cancer that instead I thought might be urine, because it was thin and light. Sorry if that's TMI, but it doesn't seem so in this particular diary thread!

        My point is, ultimately, that we shouldn't be so hesitant about an embarrassing symptom, or think that the explanation is easy and obvious,  so that we then stop pushing for answers.

        I should also add that I did in fact tell at least two medical practitioners about this issue without getting any traction on it, so clearly you just have to keep on till you get a real answer.

        Thanks for this diary, dangoch. I appreciate your candor very much.

        •  You are so right. Good think you pushed (4+ / 0-)

          In many ways, I think doctors are embarrassed about talking about this as much as we are.  It took me a long time to get the courage to talk, but getting straight answers from doctors is no easy matter.  I've been trying to get answers for 40 years.  In the second part, I talk about the fact that I am beginning to get some answers but if I didn't push for those answers, nobody would really care.  I did go through the tests to make sure I don't have any bad things wrong, but the problem is looking like nerve issues.  Even though my neurologist has done various nerve conductivity studies, he can see some impairment, but still nothing specific.  Unless I allow a nerve biopsy, there is no certain way to really know and I like feeling my body as much as I can (that doesn't sound like what I mean:)  I have diabetic neuropathy problems that affect the nerves in my legs, arms and groin area.  I'm looking to get more tests done, but there is a point where the tests become not only painful, but permanent.  I've decided that I don't want to do anything like that.

          "War is Peace, Freedom is Slavery, Ignorance is Strength", George Orwell, "1984" -7.63 -5.95

          by dangoch on Wed Nov 02, 2011 at 08:31:03 PM PDT

          [ Parent ]

      •  So sorry, no (5+ / 0-)

        a woman's body changes through pregnancy and menopause.

        The miracle of kegels is a myth on a par with magically avoiding stretch marks.  Please note that all the articles are carefully couched in terms of "may" or "can", not "will".

        A little tender courage at that rare right instant, and things might well have turned out differently -- Ken Kesey

        by Frankenoid on Wed Nov 02, 2011 at 07:09:49 PM PDT

        [ Parent ]

        •  Since I'm the father of two girls, I didn't go (1+ / 0-)
          Recommended by:
          KelleyRN2

          through the physical issues women go through.  I can only go by what I've heard and read.  Men can have stress incontinence too, but it is much less frequent.  All the more reason to talk to the doctor but also find ways to remain comfortable and eliminate the embarrassments that incontinence can bring.  Many doctors are not trained in dealing with incontinence so experience matters greatly.  Many doctors are quick to take a knife to fix things.  I'd rather wear diapers than have urological surgery that has no certainty to fix things like this.  

          "War is Peace, Freedom is Slavery, Ignorance is Strength", George Orwell, "1984" -7.63 -5.95

          by dangoch on Wed Nov 02, 2011 at 08:37:43 PM PDT

          [ Parent ]

          •  I just see it as (0+ / 0-)

            one more way of turning normal female aging into a medical pathology, which is how we get such wonderful results as "hormonal replacement therapy" leading to increases in cancer, and drugs for "osteopenia" (which means "you're not 30 anymore") which allegedly "increase bone density" actually causing changes in the bones which lead them to break!

            Stress incontinence is just an annoyance; so is being short. :D

            A little tender courage at that rare right instant, and things might well have turned out differently -- Ken Kesey

            by Frankenoid on Thu Nov 03, 2011 at 08:40:32 AM PDT

            [ Parent ]

        •  I've done kegels for several years (4+ / 0-)

          (for reasons other than incontinence ;-) ), and still have problems with stress/situational incontinence.

          Now to try to end the wars we ask our gay and straight soldiers to fight. -- Chris Hayes (modified)

          by Cali Scribe on Wed Nov 02, 2011 at 10:31:16 PM PDT

          [ Parent ]

      •  Not on me. (1+ / 0-)
        Recommended by:
        second alto

        I've got stretched and torn muscles all through the perineal area. Kegels help me enjoy sex more. But if I cough, sneeze, or vomit, I better either be sitting on the toilet, sitting on a pad, or in a pinch, cross my legs high and hard.

        I also have IBS, and learned a while back that the sensation of needing to let a fart out can be sadly deceptive.

        When you come to find how essential the comfort of a well-kept home is to the bodily strength and good conditions, to a sound mind and spirit, and useful days, you will reverence the good housekeeper as I do above artist or poet, beauty or genius.

        by Alexandra Lynch on Thu Nov 03, 2011 at 09:52:30 AM PDT

        [ Parent ]

  •  Are you familiar with (3+ / 0-)
    Recommended by:
    barbwires, KelleyRN2, second alto

    external male catheters?  

    My friend had his bladder removed as a child due to cancer and only had a new one created (out of colon tissue) as a young adult.  In the intervening years, he war an external catheter connected to a collection bag tied to his ankle.

    The catheter was similar to a thick condom with a tube at the end.  It was shaped something like a funnel.  The tube was connected to the bag.  

    It's original purpose was for male spinal-injury patients.  But it works in all cases where urine can't be controlled.

    Thanks for your courageous story.

    Snark Society of America - We Appreciate Your Support

    by john07801 on Wed Nov 02, 2011 at 10:25:32 PM PDT

    •  I've never tried external or internal catheters (2+ / 0-)
      Recommended by:
      john07801, second alto

      I've heard that you can get skin reaction in a very sensitive part of the body or UTIs.  Of course, diaper rash is no fun either.  I have some level of bowel incontinence too so a catheter won't help for that.  I guess I should give it a shot sometime.  Never know how something works without giving it a try.  Thanks for the suggestion.

      "War is Peace, Freedom is Slavery, Ignorance is Strength", George Orwell, "1984" -7.63 -5.95

      by dangoch on Thu Nov 03, 2011 at 09:06:19 AM PDT

      [ Parent ]

  •  I've developed just a bit (3+ / 0-)
    Recommended by:
    barbwires, KelleyRN2, second alto

    of situational incontinence as I've hit menopause -- mostly a case of "letting loose" just a bit when I cough or laugh or sneeze. Not so much for the full diapers (which I'm very familiar with; we buy them for my mother-in-law who wears them mainly at night in case she can't get to the bathroom in time), but enough that I wear pads (similar to the pads I wore when I was still having periods).

    Now to try to end the wars we ask our gay and straight soldiers to fight. -- Chris Hayes (modified)

    by Cali Scribe on Wed Nov 02, 2011 at 10:29:16 PM PDT

  •  I know the shame of which you speak (2+ / 0-)
    Recommended by:
    KelleyRN2, second alto

    Sudden urges to pee related to diabetes started happening to me at least a year before I was diagnosed.  I peed on the side of a lot of buildings, ran into bathrooms tearing down my pants, and one more than one occassion, didn't make it before the pee came.

    I was so embarassed that I didn't talk about it to anyone, certainly not a doctor.  I needed to be begged, by friends and family, to see my primary, and even then, they didn't know about the incontinence.

    Ancora Impara--Michelangelo

    by aravir on Thu Nov 03, 2011 at 05:21:27 AM PDT

    •  It is so sad that we all react like this (1+ / 0-)
      Recommended by:
      second alto

      After many years corresponding on incon forums, most believe it is our potty training that  causes this shame.  We don't feel shame for most anything else that happens to us.  Diabetes is an insidious disease.  I've been having a running battle with my Drs. trying to get answers to why I am having these problems.  Once I got diagnosed, they just assume it is the diabetes and don't bother looking further.  My problem doesn't appear to have any relation to my blood glucose levels or my degree of sugar control.  My A1C last month was 6.4, the lowest I've been since I started getting A1C tests, but I went through a wet cycle just a few weeks ago.  I do get sudden urges all the time and I've experienced similar experiences, but there are these wet cycles where I don't get urges, it just comes out with no feeling so my first indication, if I'm awake to notice, is a wet feeling in the groin area or a stream of pee running down my leg.  Nothing worse than having that happen in public, so wearing diapers is the only way I've found that makes it manageable.  I value my continence.  Most people don't realize how nice they have it.  But I'm afraid I'm slowly loosing that battle.  My biggest worry is what happens if I'm not able to deal with this by myself.  I don't want to push this on to my wife.  That is why I'm trying to get some answers.  But Drs. don't always cooperate because the needed tests are expensive and frequently don't give any conclusive answers.  Nothing worse than going through painful and embarrassing tests only to be told that everything looks normal.  But everything isn't normal.  That is hard to pin down.  Sometimes the tests are performed when nothing is happening.  I'm not constantly incontinent so that makes things very hard.

      "War is Peace, Freedom is Slavery, Ignorance is Strength", George Orwell, "1984" -7.63 -5.95

      by dangoch on Thu Nov 03, 2011 at 08:57:31 AM PDT

      [ Parent ]

      •  Given your story (1+ / 0-)
        Recommended by:
        second alto

        I doubt that incontinence at least started with diabetes for you.  If the symptoms haven't receded, notwithstanding whether some of your incontinence was related to diabetes, it clearly can't be considered the proximal cause.

        Ancora Impara--Michelangelo

        by aravir on Thu Nov 03, 2011 at 09:27:29 AM PDT

        [ Parent ]

        •  That's my feeling too but trying to tell that to (2+ / 0-)
          Recommended by:
          aravir, second alto

          doctors is another thing.  I think I'm making headway with my PCP and maybe a little with my neurologist, but my urologist doesn't want to bother with other tests.  The urologist is more interested in putting me on the operating room table.  I'm sure he gets paid more putting in new plumbing than trying to find out why the old plumbing doesn't work all the time.

          "War is Peace, Freedom is Slavery, Ignorance is Strength", George Orwell, "1984" -7.63 -5.95

          by dangoch on Thu Nov 03, 2011 at 10:21:46 AM PDT

          [ Parent ]

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