In Part 1 of my incontinence diary http://www.dailykos.com/... I talked about my early experiences with incontinence. It is no easy topic to discuss because most people are embarrassed to talk about something like accidentally wetting your pants. Some may say that wetting your pants isn't really a disability, most of the time, there is no pain, no inability to perform a task, it's just "inconvenience". That may be true, but in most situations, it isn't the act, it is the state. Wetting your pants is no big deal, but walking around with wet pants is significantly embarrassing. People who are incontinent don't look different, at least not until the problem occurs. Then the fear of ridicule and harassment is paramount in one's mind. Where to hide.
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 splayed or neutered or sent to Limbo.
After being diagnosed with diabetes, a whole new process had to be learned. Being a guy, I didn’t like going to the Dr. to get it checked out. I started taking my meds and tried to watch my diet and I did manage to lower my BG readings. However, I did go through periods of diabetic denial, where I stopped taking my meds and stopped measuring my BGs. I felt fine, why go through all this bother. In fact, as Diabetes: A Love Story aravir points out, being an out of control diabetic, you lose weight without any effort. How nice is that? People would tell me that I looked great, I’d lost some weight. That was a nice boost to my self esteem. But it wouldn’t last long, I still occasionally had a wetting cycle, the adult diapers that first were terrible and leaky, were beginning to be much better. I could actually expect to contain one whole wetting in a diaper and not immediately have to go change or find wet spots on my pants. But I was under constant fear that people would find out my secret, that I wet my pants or that I needed to wear diapers.
Around this point in time, the internet became available, at least for me, my work got connected and I had a web browser. I don’t know what caused me to do a search on “adult diapers” but I did. The results of the search blew my mind that first day. I was not alone. There were other adults that wore diapers, but I soon discovered that some wore diapers because they liked to. That was strange. Why would anyone like to wear diapers? There was an active community of Adult Babies (AB) and Diaper Lovers (DL), people that enjoyed wearing diapers. I learned a great deal the first few months on the internet. There were other people that were my age that were incontinent. I actually found people I could talk to. I can’t begin to tell you how this made me feel. My self esteem went up significantly. As I talked, listened and learned, I realized that there were many fellow sufferers in the world. Of the people that were incontinent, many had injuries, diseases, birth defects, etc that caused their incontinence. But why was I suffering? I wanted to know the reason for this problem. I had no answers. The Google didn’t exist yet.
Then I began to have tingling in my feet. Shooting pains occasionally up and down my legs. It didn’t happen that often, but it eventually happened enough to get annoying. The tingling in my feet progressed to pain. The shooting “electric shocks” that went up and down my legs were getting worse, my hands frequently were getting numb, sometimes I could feel my bladder bouncing around like a basketball. I decided to ask my Dr. what was happening. She sent me to see a neurologist. He diagnosed me with peripheral neuropathy, or more specifically, diabetic neuropathy, which is the same thing but diabetes is the root cause. I don’t remember the exact circumstances, but I think I was having a “wet cycle” one day when I went to the neurologist. I happened to mention that I occasionally was incontinent. Not a subject that I was comfortable in discussing, but I hoped that maybe there was a "fix". That was the first time that someone began to see the bigger picture. I got sent for more tests, some painful, some nasty, but all negative. The urologist basically said that my incontinence was the result of diabetes, good-bye. The other Drs. seemed to feel the same way. But at least I had a plausible understanding of what was going on. But did I have diabetes way back when I was a kid? Not likely but nobody knew for certain. There is a likelihood that I was diabetic for years before it was detected accidentally, damaging my nerves without me knowing. But nobody can explain how neuropathy and diabetes have caused my incontinence problems. Seems I hit a brick wall when the two words “Diabetes” and “Incontinence” are mentioned. Case closed. But my urologist does say that I am on the far end of the bell curve as far as urology cases go. He offered to “fix” my problem by putting in a new plastic sphincter to replace my obvious defective one. I declined. He suggested I get an erection replacement also (another topic that is fairly taboo, ED). I declined. He said it would almost be two for the price of one. No! No! NO!
So that pretty much brings you to date. I’m pushing to get more testing at Stanford to see if something can be found that is a little more definitive. I’m not looking for a cure necessarily but I’d really like to know why this is happening to me. I’d like more answers besides the “Diabetes”, case closed answer. I’m now 60. The men at the urologist are all my age. I’ve reached the age when people are expected to have accidents. But I don’t want to accept that. I want some answers.
Now to give you some info about incontinence. As I mentioned, this is something that isn’t just for babies and demented old ladies. There are many causes: car accidents, back injuries, wars, surgeries gone bad, diseases like diabetes, ALS, MS, MD, and child birth (not a disease, last I checked). Women are much more likely to have incontinence issues than men. Women who have had multiple vaginal births are much more likely to have incontinence issues. Prostate cancer or enlarged prostates can cause incontinence. But many cases of incontinence are idiopathic, meaning cause unknown. I’ve always thought that idiopathic meant the Dr. was an idiot, but that’s just my opinion.
There are many forms of incontinence: stress, urge, overflow and mixed. Stress incontinence is where you accidentally pee when you sneeze or pick up a package. Some strain on the bladder area causes the sphincter to release. This usually results in a release of small amounts of urine. Urge incontinence is when you suddenly have to go to the bathroom and you don’t make it. That usually results in a flood. Over active bladder muscles usually cause this one. Overflow incontinence happens when the nerves to the bladder are damaged. This can be caused by injury or disease. Finally, Mixed incontinence is what it sounds like, a mixture of the other three. Each of these forms of incontinence can be treated in some way. Some require exercise, some require medications, some require external devices like diapers or catheters. Some people even have surgery to fix pelvic floor muscles or insert new sphincters. I won’t scare you with the details of how they work.
For most of these diaries, I’ve talked about urinary incontinence, but there are many who suffer from fecal incontinence, either alone or with urinary incontinence. In addition to the already mentioned causes, fecal incontinence can be caused by Irritable Bowel Syndrome or IBS. Some people suffer permanent, daily occurrences and some are like me with irregular events. Amazingly enough, Drs. don’t totally understand the nerve impulses and responses that drive the alimentary system of the human body. So it only follows that they don’t understand fully why things don’t work properly either.
People need to learn that incontinence is not a laughing matter. But most of the time, it isn’t the victim who is laughing, it is the fear that others will laugh at them. We have been trained from early age that babies wear diapers, big boys and girls go potty in the toilet and wear big boy and girl underpants. Anything that goes beyond that norm is to be shamed. People fear even talking about it. Adults don’t do this. Only babies wear diapers. Maybe Grandma pees in her rocking chair sometimes, but she’s old.
I want people to realize that there is nothing to fear in telling your Dr. about a problem like incontinence. To be sure, Drs. have heard it all before. Many people have different ways to deal with life’s little challenges. But an open discussion about things like incontinence will help people get the care they need and hopefully diminish or eliminate the taboo. Some people can never be cured, but they can be helped. I know many people that go about their lives wearing diapers 24/7 who think nothing of it. As far as they are concerned, the only thing different is they wear different underwear. That is what I hope to impart in this diary. There is no shame in being incontinent. Babies aren’t the only ones that have “potty problems”, it isn’t just the old folks in the nursing homes that wear diapers. This is a problem that affects 25 million people in the US alone.
It is time that incontinent people be allowed to come out of the closet and have no fear of being ridiculed. I’ve found that many diaries on DKOS joke about wetting your pants. Some think it happens from fear. Some seem to think that it is a nice warm feeling. Not very funny as far as I’m concerned. Some diaries say that if such and such happens, he’s going to crap his pants. Well, people do crap their pants, I’ve crapped my pants many times. It isn’t fun and it isn’t funny and it rarely happens the way people say. 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 Vegas, 1 in 3 odds isn’t great, at least when you don’t want to be the 1. But compared to getting hit by lightening or winning the lottery, it is almost a sure bet. 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.