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    My experience with #Autism and #Incontinence

    It's a new year as I'm typing this. I spent a long time trying to find a story like mine. I feel like sharing what I've been through could help someone else out there. I made this after going through all my school records to help me get a better timeline. Apologies for the length of this if it's abit long.

    Let's go back to the beginning, I found a developmental screening test from when I was about to turn 3 years old which states that I "refuse to sit on the toilet. I would let parents know when I needed a change. I could sometimes pee in the toilet, and could use pull-ups. But I would not ask to use the toilet.

    I ended up being "toilet trained" around 4 years old, but I continued to have a goal in my school records for using the toilet independently until I was 6. No matter how hard I tried to be responsible as I continued to get older, it felt embarrassing with how often I continued to have bowel accidents in my underwear or the uncomfortable feeling of having to hold a full bladder until I could get to the toilet. I spent most of my time at home when I wasn't in school. I had multiple instances between roughly the ages of 6 and 13 of bowel accidents, sometimes I would lose consciousness in class after not realizing how bad I needed to go holding it in and end up having an accident.

    Then around the age of 10, #constipation was a severe challenge for me, and I ended up having an impaction which left me stuck on the toilet for hours in pain and struggling to go. This was along with several years of having bowel accidents in my sleep that I wouldn't notice until I smelled it or I woke up. I remember feeling so tired of cleaning my regular underwear, the thought of wearing pull-ups or diapers left me feeling a little curious. But I didn't want to be labeled as broken. At the time no one offered this as an option and I felt too afraid to ask.
    I made it a goal to not let something like the impaction come back again.

    However once I reached middle school, I had a new challenge to face. When I was in elementary school, we had time scheduled for our day to use the restroom and thankfully I don't remember any teachers being harsh about it or my accidents. I also had challenges in processing math, and I had a resource teacher that was supposed to help me. I always made it a priority to treat my teachers and peers with respect and kindness, hoping to receive the same in return. This one resource teacher however, yelled at me and the class for the 3 years I had her because we didn't always know the right answer. I wasn't having accidents at this point, but I still would get strong intense urges to go and she would continue to intimidate me. She would remind me how getting a job someday meant I might not always be able to go to the restroom when I feel like I needed to. This deeply hurt me and stuck with me for a long time.

    At this point I realized I felt so frustrated over a basic need. I ended up getting a sample of a men's depends pull-up that was too big for me and I wore it to school not knowing I was going on a field trip. I ended up surviving it, but I was still humiliated with the pull-ups jingle from a choir teacher after the trip.

    After this incident, at 16 I changed high schools and ended up getting a new support class for those with Autism or social challenges. I told the new school I had #ibs issues at the time, but I was having way less accidents most of the time. Still dealing with strong urges with my bowels, but I was able to make it to the toilet. I still had one bad day with extreme gas that would not quit and was really embarrassing. I'm just thankful it wasn't an accident in class.

    By the time I graduated at 19 I was doing good with my assignments and attendance, I realized I had good opportunities with work ahead and I felt confident in what I wanted to do. But after I went on a date with someone who would eventually be my partner, we went out to the mall near Christmas time, when we were in a store and I felt a strong sudden urge like my bowels needed the restroom, and before I could get their attention the pain was strong and I had to pace myself going to the restroom close by. Thankfully I made it but they came to check in me, and I'm thankful they were kind, patient, and understanding about it.

    Around this time I had started getting back into Pull-ups occasionally and found it comforting. I could still get to the restroom, but I could be a little bit more prepared just in case. Coming out to my family about needing it wasn't easy, but I was met with an open mind and a willingness to try and help. I tried a medication at one point, and although it helped me slightly in addition to relaxing the occasional muscle tics I've had most of my life, I ended up sleeping way too much and it was not something that worked for me.

    It took some time, but after feeling insecure about it, I got a new doctor and with the help of someone I trust, asked them to add bladder and bowel incontinence to my record and they explained it's a part of my Autism. Someone once said to me that "There are some things that we just can't control, but we can still learn to manage it and try out best". These days I can get by when I need to, I'm glad I have the supplies I need in case I have an accident and don't have to worry about running out as of now. When I know I'm in a safe space and I can wear my pull-ups and care for myself as I need to, I feel like I'm finally nurturing a part of myself that I spent so long trying to run away from, or hide and mask so I wasn't known as the "person with accidents". My partner encouraged me to be honest about my challenges, but to also be discreet and responsible, keep trying to do the right things at the right time. I have optimism I can get a good work from home job and continue to accept what I need to help me manage my experience. For me, I focus on fiber, a laxative as needed if I'm stuck, trying to stay hydrated, with apple juice and water, and also wear what I need in case it just can't wait. Accidents happen, and that's okay.

    For so long I felt afraid I would be rejected by the world not just because of my social skills or my challenges with math, or understanding what my body needs. But now I'm finally accepting the tools I need and support from others, I feel ready for anything.

    I hope if anyone can relate to this journey that it helps you feel something comforting. Please don't give up or lose hope. This wasn't easy to share when I first started typing it out, but I am thankful to be here now accepting it all. Everything I need is already here. Thank you for taking the time to read this.

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    My insurance company has stopped carrying my incontinence briefs! I have Lupus, and have bowel/bladder loss, especially when I’m in a flare. I also have IBS and often just can’t get to the toilet on time. I’ve had tremendous luck with the company that’s been supplying my briefs for more than two years, but when I tried to make my usual Rapid Repeat Order, I was sent to a customer service agent. They no longer carry my briefs! They are phasing out their plastic backed briefs for breathable briefs. They sent me a sample to try; it was flimsy and it leaked. They are sending a different sample to try. I found my preferred briefs on Amazon, but my insurance pays for them and it was not an easy process. Does anyone know if different incontinence companies carry different products? Are all plastic backed briefs being phased out?
    #Incontinence #IncontinceBriefs #HealthInsurance

    3 reactions
    Post

    This Bed, Incontinence, and Fat Me

    This motel bed is worn out from my fat body and the limited space I have on it. I sit up on the bed, and my abdomen sits over my legs, and it causes my right thigh a lot of discomfort. I can't find a position that works except leaning back and to the left, but then I have my phone too close to my eyes (and most positions I sit in, I fall into leaning forward, so the phone's too close to my eyes even then. Leaning back doesn't always help, either.

    The bed I'd sunk in, and the times I've wet the bed (yes, I use bed pads, but when I've emptied my full bladder, it's not enough, plus my boyfriend only gets the cheapest bed pads and underwear, and they don't even carry my size in any brand in the stores.

    Yes, I *am* trying to lose weight, but I'm limited as to what I can eat, and when I stay at the motel instead of going out, like I did today (because I'm sick), I have to rely on what my boyfriend's willing to get me. I only eat one meal a day, and a bag of chocolates as a snack. It's terrible, I know, but it's hard to find healthy snacks you don't have to refrigerate, especially if you crave sweets.

    I'm getting drowsy again, so I'm going to stop here.

    #Anxiety
    #ocd
    #obsessivecompulsivedisorder
    #Depression
    #panicdisorder
    #hoarder
    #hoarding
    #ptsd
    #cptsd
    #disability
    #abuse
    #emotionalabuse
    #mentalabuse
    #Financialabuse
    #Obesity
    #BladderIncontinence
    #Incontinence
    #UrinaryIncontinence
    #urge incontinence
    #bedwetting
    #overactive bladder

    Post

    Well, I Did It Again

    I have urge incontinence. I leaked when I got up, and it got on my shoes. This means going through physical and mental things that leave me sweaty, exhausted, anxious, and so on. On top of everything, I have a cold. When I told my boyfriend, he cursed out loud. He got mad at me and wanted instructions on what I needed him to do at times when I needed to focus on the task at hand. I'd asked him to get backup shoes for situations like this. When urine gets on my shoes, I need new ones. I'm so exhausted and sleepy. I'm also sick. Why does he have to yell at me for stuff I can't help, especially when I'm so exhausted, sweaty, physically, mentally, emotionally, and I'm getting sleepy. I feel bad enough when this happens. Why does he have to make me feel worse?

    #Anxiety
    #ocd
    #obsessivecompulsivedisorder
    #Depression
    #panicdisorder
    #hoarder
    #hoarding
    #ptsd
    #cptsd
    #disability
    #abuse
    #emotionalabuse
    #mentalabuse
    #Incontinence
    #urge incontinence
    #urinaryurgeincontinence
    #bedwetting

    3 comments
    Post

    Any diabetics out there that take something for gas and bloating?

    #Incontinence

    1 reaction
    Post

    A Question For Women that have Interstitial Cystitis, or Incontinence.

    Hey, everyone. I hope you're all okay, or doing as well as can be.

    Okay, ladies... I suffer with a bladder condition that has me in pain 24/7. Because my bladder randomly spasms, for no reason at all... It can make me have accidents. Sometimes big ones, but mostly a trickle or leakage.

    So, up until last year I'd been single for five years. Over those five years, things have gotten worse. I now have to wear pad all the time. Anyway, my girlfriend says my health issues will never deter her or put her off... But I'm worrying about things getting heated between us... I'm terrified. What if there's the smell of pee? What if my vulva eczema flares up and I have to use my steroidal cream?

    I know we could just plan ahead, but that ruins the spontaneity, and I'd be all nervous about getting closer to the time we set. Which would most certainly ruin the mood for me.

    I don't know what to do... Do any of you have a tip about this, I would really SERIOUSLY appreciate it.

    Thank you all in advance.

    #interstitialcystits #bladder #bladderdisease #ChronicPain #Incontinence #chronicillnesswarrior #help

    9 comments
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    Not all #Incontinence products work as designed and it irks me

    I’m sitting here after having to change my incontinence brief (I’m a double #Ostomate , both urostomy and colostomy, but I still wear the briefs for any leakage) as well as my jeans and t-shirt after having just enough leakage to wet through the brief. I’ve taken a photo of one of the briefs I’m using bought at a local store which provoked this thought.

    You see, under normal circumstances I would use the Kimberly-Clark Depend brand protection with tabs, ordered from a medical supplier and then shipped to my home. But, I’m currently in a gap where I need a new prescription from my urologist to get a new order filled — and I don’t get to see him until next week. So, I’ve been buying store branded ones because Depend does not send the protection with tabs to stores for consumers to purchase.

    And this is where the problem lies. You see, the Depend uses a plastic outer cover. If you leak through, you don’t end up with wet clothes unless there are leaks around the legs. This works well for those of us who, for example, cannot walk and must use a wheelchair.

    But then there are the store bought ones. Without exception, the store brands from all major US retailers have a CLOTH outer cover. If you have a heavy amount of leakage, it gets through the cloth, straight to whatever clothes you’re wearing. That leads to embarrassment that these garments should be preventing.

    Kimberly-Clark learned from this back in 2016 when they tried introducing a similar cloth outer cover. They immediately received a lot of feedback (from myself as well as many others) saying that the product no longer worked as intended. Within the year, they reverted to the older version.

    It is time that the major US retailers followed the lead of Depend. Your products are failing many people. It’s time to go back to what used to work…or failing that, pressure Kimberly-Clark to allow you to stock a product that does work as designed in your brick-and-mortar locations.

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    CURING HUMANITY

    I’m a 19-year-old college advocate hoping to reach the FDA to promote the accelerate of cures/vaccines for incurable diseases. Please help by signing the petition and promoting it to your social media if you agree with my petition. We can start by passing the Promising Pathway Act Bill.

    For more information read my petition…

    www.change.org/p/janet-woodcock-m-d-accelerate-the-developme...

    iamals.org/action/promising-pathway-act

    ** TAKES LESS THAN 3 MINS COMBINED TO COMPLETE **

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    Medication barely working!

    I've taken several different medications for my #NightWetting . I'm currently taking #Vesicare 10mg. I take it about 30 mins before bed. In addition I also manage my fluid intake very very strictly. Vesicare is definitely more effective than any other #OAB #Medication I've taken but still with all these measures in place I still have accidents about 4 times a week. I'm disgusted with this. I feel like there's no hope in sight. I wear an overnight #diaper to bed every time I go to sleep which frustrates me more than anything. Anyone taking medication/s that actually eliminate their #bladder issues?
    #Enuresis #overactive bladder #Incontinence #OABMedications #NocturnalEnuresis #AdultDiapers #UrgeIncotinence