ANONYMOUS’S PERSONAL STORY

Several years ago I began having episodes of fecal incontinence at night while asleep. Sometimes every few months or multiple times a week. I chalked it up to the frequent diarrhea I had been having since my gastric bypass in 2002. Then I began having minor spotting accidents during the day. I began taking extra clothes to work just in case and lived in fear of a “big one at work” I couldn’t hide. Eventually, it got to the point that if I didn’t make it to the bathroom at the first indication I had to go, I would mess myself either a little a sometimes a lot. When I started having accidents in bed, I bought a good mattress protector. However, I was exhausting the next day when I’d have an accident because I would have to change all my bedding and clean myself up. This might mean a full shower if my accident was bad enough. Try going back to sleep after a midnight shower. I rarely could. I was often exhausted from lack of a sleep the next day and this was affecting my work. I know many don’t like to say this, but I began wearing adult diapers to bed every night because I never knew when I was going to have an accident or how bad. I was bed wetter until my early teens so the choice to wear diapers at night was not as hard for me as it might be for some since I had been in diapers for my bedwetting until my mid teens. Granted, back then the only option was cloth and plastic pants, not what I would choose for fecal incontinence. Even with my prior experience, I was very humiliated and felt a lot of guilt at first because I was an adult and adults shouldn’t be wearing diapers. I must be lazy or less of a person because of my problem. It took me a long time to get over this type of conditioning and accept this was a disease and I did not ask for it, but I had to deal with. I was letting social norms dictate how I should feel and act. I was still too embarrassed to go to my doctor so I handled it on my own. It took much trial and error to find the brand and style of diaper that worked best for me. Thank god for so many reputable companies and their helpful staff. I know most just wanted to sell a product, but many seemed genuinely concerned and listened to my “sob” story with a sympathetic ear. However, when I realized I no longer had to worry about a mess spread all over the bed in case of a night time accident and have it neatly contained (yes neatly be a relative term), I could actually get a good nights sleep. My work improved and I had more energy during the day. My day daytime accidents were the same though. I never knew when, where or how bad they were going to be only that they were going happen sooner or later. I was still reluctant to wear a diaper in public for fear of discovery. I finally had a major accident in a public place (Wal-Mart) that was blatantly obvious and totally humiliating. I decided never again. Someone may or may not notice you are wearing a diaper, but a really bad accident in public will definitely be noticed. I chalk that up as one of the most humiliating experiences of my life. Anyone whose been there will understand. It did not happen overnight, but I gradually began wearing diapers all the time and I have been wearing them in one form or another for over 3 years. I have gotten to the point I can call them what they are, diapers. Not pads or fitted briefs or other euphemisms, I don’t even say adult diapers anymore. I found that being matter of fact about what they are helped me get over the social stigma (mostly). When I started wearing them all the time, it was very difficult to accept and get used to. Wearing them at night was one thing, but in public and especially to work, quite another. I was always afraid someone would notice and say something. However, I learned that with proper a wardrobe, I could even hide my very thick nighttime diapers I had to wear during the daytime when my incontinence was at its worst. The hardest part was wearing them at work, but I even got used to that after sometime. I eventually found that as I got used to them I stopped constantly worrying about them being noticed. I also realized that even if I had a major accident, I could get to the bathroom and change before anyone noticed. When I realized all these things, I was able to gradually relax and focus on what I was doing, be it work shopping or what ever. I think this is about the time I realized I was in control, not my illness. This also helped my work performance and attendance. I did notify HR of my medical condition in case I had to leave work for a really bad accident, but fortunately I did not have to provide details. I just had advise them I had a management strategy and my condition would not place an undue hardship upon them. I realize most would choose diapers to manage this condition, but when you know it is a matter of when not if you are going to have a bowel accident, you do what you have to do and this works for me. I have since been to several doctors. Besides chronic diarrhea I have been diagnosed with mal-absorption syndrome and take vitamin shots on a weekly basis. This has greatly helped my fatigue as well, but done nothing for my incontinence. My doctor is still searching for a cause, but offers no answers so far. He has warned me I should be prepared to deal with this long term. I’m hopeful, but I think he was trying to tell there may be no easy answers or cure. I will not undergo invasive surgery nor will I live with a colostomy bag. The drugs I have tried may have reduced my incontinence but since they have not eliminated it, I will still always wear a diaper. Since the vitamin shots and sleeping through the night, I feel better than I have in years. I will never willing repeat the humiliating experience I had messing myself in public. Yes diapers are not what I want to wear everyday and it might not be the right choice for everyone, but they are non invasive and have few side effects. If a treatment is found, they can be easily removed, unlike most surgical treatments. They can be worn discreetly and with the internet, ordered discreetly. I find it helps to keep things in perspective. When I first started having this issue, I was terrified I had colon cancer, as cancer runs in my family. I was so relieved it wasn’t cancer, I found I didn’t care so much about my incontinence even as no cause could be found despite numerous tests. I look at some of the illnesses and diseases some of my friends and family have been forced to endure (and some passed away from) and I remind myself how lucky I really am. Even after all these years I am still embarrassed getting up in the morning in a messy diaper. I know I have to put a fresh one on ever morning or or risk having public accident at work or wherever I am that day. But it is just a style of underwear that allows me to keep my dignity. I mean it is just plastic and absorbent material, nothing more. I still hope for a cure because I would love to go swimming, wear shorts in the summer or do any number of other things I used to do. I never realized how hot even the thinnest diapers are. But I will not wallow in self pity, be a shut in or let my incontinence control me. If I have to wear diapers for the rest of my life so be it. I will control my life not my underwear or my illness. I urge everyone to remember this, is not an easy hand you have been dealt, but you can play it and persevere. Don’t ever give up, YOU ARE IN CONTROL. However you handle your disease don’t quit, don’t give in, don’t despair. I am using diapers to manage my illness. Don’t let society and the stigma stop you from using them if they might be your best alternative. If it is not for you then there is an answer don’t quit looking. You will find it and you you will over come. To quit is to die, so DO NOT QUIT! If you take anything at all from my story, that is it. DO QUIT. DO NOT GIVE IN. DO NOT GIVE UP. YOU WILL PERSEVERE.