Encopresis and beyond (4 Questions asked)

Hey everyone,

How are you all doing? I wish to give a huge warm welcome to all my new subscribers (and Thank You).

I was asked recently via e-mail from a parent, about my experiences with Encopresis with a different angle. Below are the questions, and after that will be my responses to them. I hope it helps you all, for those that need it, and feel free to post your thoughts to them or e-mail me: naturegirl015admin@themagicwithinus.com

1. At what age did your parents decide to let you take responsibility for managing your Encopresis on your own?

As a young child and more importantly as a teenager, I was given a plastic bag with a spare change of underwear (and can use the bag to put the soiled underwear in until home). However one spare change isn’t enough when that gets soiled literally as soon as it’s on (smell always lingered). After being constantly bullied when at the school bathrooms, I wouldn’t go in them during school hours unless absolutely necessary (ask your son/daughter about this), and never felt comfortable in there. My stools are very large (thanks to having Encopresis), that they have been known to block the toilet. Blocking the toilet in a public place is very embarrassing and highly increases low self esteem and very self conscious to the point of avoiding it. As a teenager (13 years old), I was old to put my dirty underwear in a bucket of Napisan (stain remover, in the laundry) to soak, which I would do. However when the underwear had the skid-mark type hard stools (and worse), then was yelled at and made to scrub it. This constantly made me cry my heart out to empty ears and very angry & disappointed with myself (as was everyone else). Admittedly and ashamedly this also led me to throw my underwear in the bin in secret to avoid the pain of going through it all, and survive and be a “normal” person. I was later found out (obviously had less underwear in the laundry), but it didn’t stop Encopresis or the emotional pain. Having the spare underwear handy is good and discreet at the time (not so discreet when people can smell it, except me). I wasn’t ever officially diagnosed nor had any X-rays/scans that are available now. I was also given a daily stool softener, Paraffin Oil (before dinner, and water after). It tasted yummy and makes me happy to think about it (it did from time to time give me Diarrhea or leave a oily residue). Did it make a difference? Honestly and in my personal experience, I definitely say YES! My bedroom was extended at age 15, when we did home renovations, and I was given my personal ensuite (and TV in my room), this also made all the difference…and the year I noticed my Encopresis had stopped.

2. Were you able to stop withholding cold turkey or did you still withhold and have the occasional accidents?

See above about personal ensuite/TV installed. I wouldn’t say that I “stopped withholding cold turkey” because I didn’t know that this was happening. No one, not even my parents, mentioned my clean underwear for a significant period of time. No one noticed, not even me. It was an advert on TV or a story or something I heard that when I thought about it was like, “Oh I stopped soiling…cool”, and then continued living.

3. Did you have an epiphany moment when you decided to change? What was that moment and what triggered it?

As mentioned previously.

4. Do you consider yourself to be completely free of Encopresis or do you, as an adult, still catch yourself withholding and take appropriate actions to avoid getting backed up?

Yes I do consider myself Encopresis-free..I’ve referred to myself as an “Encopresis Survivor”, and proud of it to admit it. If you or someone you know is Encopresis-free, then you’re an Encopresis survivor too. Keep in mind I will never say that I am in remission, of Enco (might explain this in another post). Admittedly I can’t pee/poop “on demand”, and this also means that I have difficulties to go successfully (go and not “get the urge but can’t physically go Now”) on the toilet on long haul flights. Sometimes I will get the pain in my abdomen for a few days (after long travel), but this eventually disappears after appropriate action has been initiated. I do continue to have large stools, although go more regularly (doesn’t have to be daily…it’s normal for me to NOT do a “number 2” daily). I prefer to poop at home/hotel.

Thank you for reading my blog. Please let me know in your comments below if you found it useful, any tips for others and what your thoughts are on this.

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Have a wonderful day, keep smiling and stay strong.

Dimity

Society and Encopresis

One of the hardest things of having Encopresis (whether it is having the condition or being a family member of someone with it), is how society in general deals with it. It can range from hurtful comments, bulling, being treated as a loner and more. “Treat others the way you want to be treated” doesn’t appear to be something that society has understood yet, when understanding people with Encopresis.

The true value of Friendship takes on a whole new meaning when you have Encopresis, and rarely have “friends” that will accept you for who YOU are regardless of your smell. The more people that open up and share their stories to the world, as an Encopresis survivor, the more awareness Society can learn about it. Bedwetting is socially common and accepted while being someone that has a complex and misunderstood medical condition of Encopresis is treated beyond taboo, simply because no one takes the time to actually say hi.

Okay, hanging around someone that stinks is horrible…however so is being on the receiving end. As I once said to a fellow Encopresis survivor (and he knows who it is), “I know I stink, but it’s your attitude that stinks more”. I donate blood, am a registered organ/bone marrow donor, I volunteer to help feed the children (and circus train others). I have a heart. I have interests, strengths & weaknesses. I’m also full of love and have so much love to share. Now I don’t have Encopresis, I’m an Encopresis survivor, but I know how it feels. My social confidence with peers is lacking compared to others whom are more outgoing (and do NOT have Encopresis). I love performing onstage, onscreen, backstage and writing. My confidence is having fun. I never let Encopresis stop me from being creative, having a heart and focusing on my dreams.

There are so many parents that I have either communicated with (via e-mail at: naturegirl015admin@themagicwithinus.com) or on Facebook, sharing their story and their frustration. Being accused of being bad parents, having “dirty kids” (whom us with Enco are accused of “not caring”) or not potty-training is very hard for these parents and their families. It is also very hard for us with Encopresis to be on the receiving end. Having no real friends that are willing to hang out with us means some of those dreams (having a boyfriend/girlfriend, first kiss, being happy and in love) feel like the most hardest dream to achieve. There have been many times at school when I would look at the other kids with boyfriends (or a rose on Valentine’s Day) and a social life and cry because I dream I can have a chance at experiencing it too. “You always want what you haven’t got”. Some of life’s simple pleasures are the greatest dream of all. I try not to let that upset me too much. I have to be strong for you all, my fellow readers.

Embarrassment, bulling, loner and more are what we (both parents/families and Encopresis battlers/survivors) suffer on a daily basis. Simply having clean underwear and someone to love us…is that too much to ask? I’m willing and eager to go public on The Ellen DeGeneres Show, and be her first ever guest (in 11 seasons) to be an Encopresis survivor. I’m doing things now at circus that I never would’ve thought I have the confidence to do. It’s an amazing feeling. I’m doing all I can to help create the awareness and understanding of a topic that is socially taboo, but people are suffering in silence alone.

I find it so heartbreaking when I hear of fellow sufferers experience depression, anxiety and feeling so alone because of Enco. It is hard for the family to get his/her child into a school system that has no interest in actually being a school with a safe environment. I myself was not only bullied at school from peers, I was kept in separate classroom because of Enco and bullied from one of the teachers. The school wanted me to learn how to cope with bullying, not them (school) to stop it. There is so much I could say about this. My heart goes out to everyone. I will speak up for those that feel the silent sting from society.

You all are never alone. I’m here. You can e-mail, Facebook, write, chat and “Like” my Facebook page. Here is a poem written about my story. It truly does speak how we feel with Encopresis and wish the world to know: http://themagicwithinus.com/2012/05/27/i-am-just-a-girl-a-poem-about-what-its-like-to-be-me-as-a-teen-with-encopresis/

If my blog is helping you, please tell me in the comments below. Where do you get your inspiration from? What are your dreams? Take care all,

Dimity

Does Encopresis mean bad parenting?

For many of the parents whom have children with Encopresis, a common thought that I hear a lot of is wondering if it’s a result of bad parenting. It breaks my heart when I hear this. My own parents have also been accused of being a bad parent or to not have brought me up right. This is a majorly bad assumption. My parents raised me correctly and I’m proud to be their daughter (only daughter).

Due to the many different (and many unknown) triggers of Encopresis, it’s very hard to pinpoint what exactly is the individual’s trigger. For some families it’s a food sensitivity, moving house, death in the family (or other traumatic experiences) or simply something wrong with the body. Sadly not many people (including fellow survivors) open up publically about the condition, leaving others in the dark and feel so alone. Myths and misconceptions breed including false accusations from people that don’t truly understand Encopresis. Everyone’s story and experiences are unique.

Each child responds differently in different situations, and respond accordingly. Parents do as best they can with all the love and support within them. Encopresis isn’t a result of bad parenting, and it never will be. As a vocally proud Encopresis Survivor, I will support all parents through this condition as best I can (including supporting fellow battlers and survivors). If you as a parent is reading this blog, please be rest assured that you are NOT a bad parent. Encopresis does not mean bad parenting and I stand by that. It’d be easier if my parents knew what was happening, but that’s not what happened. They aren’t bad parents. They love me and support me. This is what a parent does. It’s not their fault my body wasn’t working properly. Only a small percentage of people in the world are diagnosed (and not diagnosed officially) as having Encopresis. If I’m not at a certain developmental point in my life as I “should” be, how come I have been measured with a societal standard that doesn’t know anything about personally having Encopresis?

You are not bad parents (nor are the parents that have raised you if you are an Encopresis Survivor/battler with this). I’ll go onto The Ellen DeGeneres Show (if she’d have me) and verify that Encopresis does NOT mean, or result from, bad parenting. I’m here for you. There is light at the end of the tunnel.

What are your thoughts on this? Have you been accused of being a bad parent because of Encopresis? How does it make you feel?

You can always e-mail me: naturegirl015admin@themagicwithinus.com