Encopresis survivor communication

Hi to all my readers out there,

How are you all doing? How is your weekend? Thank you for the e-mails, comments and posts and sharing your family story and experiences. I really appreciate it, respond and am here for you. As an Encopresis survivor myself, I know what it feels like to feel so alone with no one to talk to whom has gone thought it and open to talk to. Someone existing and real, someone that soils underwear with no idea why, someone that I can relate to. I’m here for you all.

I am available, open and interested in talking to your child/teenager/adult. Whether it’s on the phone, e-mail, writing a letter and creating a video message on YouTube. It doesn’t matter whether your child is 4, or in his/her 60’s. If receiving a personal letter from Santa Claus at Christmas time brightens up your child’s life, I know what it would be like to receive letters though out the year from a fellow Encopresis survivor.

I will give my postal address/phone number for the families that request it. The best ways to contact me are posting on my blog directly,

e-mail: naturegirl015admin@themagicwithinus.com

Facebook: https://www.facebook.com/helpencopresissurvivorseeellen

Twitter: @naturegirl015

YouTube: https://www.youtube.com/user/naturegirl015

Enjoy the weekend everyone. Stay strong, be yourself and never give up.

Dimity

An Encopresis Survivor’s guide to Social self confidence (Part 1)

Whenever it was recess/lunch time at school I spent the majority of time by myself, or I would talk to the teachers when they were doing their walk around on duty. “Why don’t you go hang out with your friends?” they would ask. “What friends?” was my constant reply. I could hang out with the bullies…plenty of them around. When the kids at school went to a party, school dance or ball..guess who wasn’t invited? Being treated as a loner for no other reason than “just because”, isn’t going to do anything good.

Having Encopresis with the uncontrollable soiling of underwear (and NO urge) is hard enough, having any chance of a social life is a long distant dream. When I see the “popular kids” or anyone with the huge self confidence or a social butterfly, I admit I’m envious. I cried a lot because of the bullying, being stabbed, work stolen and things thrown at me. Neither of these are related to having Encopresis, only I wasn’t self confident enough to not let it upset me.

The teenage years are where the affects of peer pressure and peer influence take hold. I was able to invite a few friends to my birthday, but rarely was I invited in return. Sometimes in the movies/TV shows there are scenes where the teenagers are hanging out with their friends (both guys and girls), dates and all the other fun stuff. When you have Encopresis (including myself), it isn’t a cliche but real. It can be so painful to watch other teenagers be happy and do “normal” things, but can only view it from the outside and no idea what it’s like to actually experience it for his/herself.

Once I left school after Graduation and no longer in contact of people from school life (especially the bullies), I am more able to gain my self confidence, and with it a sense of social confidence. Performing and books (writing, reading and the library) are always a part of me. I am my most happiest doing what I love, and no longer allow bullies to take control. I won’t be somewhere if the bullies are there. I always stayed true to myself, my family and my interests.

Being on stage, on set or writing and hanging out with like minded people means a lot to me. The more I know about myself and push my comfort zone, the more I can stand up for myself. I can walk down the street with a  spring in my step and talk to people. To tell someone I know that I had Enco isn’t easy, but it really is freeing. Here is a quote from a recent e-mail that a fellow Encopresis survivor sent me:

“I told my few friends in class that I had a disorder called Encopresis and for the first time in my life I no more feel shallow for myself and that they took it lightly now I feel much better around them.
Initially I repented telling them but I found that its better to let them know than hiding inside and killing my social life, I even discovered that its considerably a better experience than being sympathised. I am really doing good at this now and I am always thankful for your dedicated efforts towards enco veterans. I may be healing in a real slow pace but I found it as a healthy development and I am sure that my leap of faith did not go in vain”.

Understandably not everyone is ready to open up to someone they trust about this condition (myself included at the time). Opening up about this to someone you trust (close friend, teacher, family) is hard initially but is something I suggest you do. If suffer from Encopresis while at school for example, a trusting friend that knows what is happening and on your team, can hint that you need to change and be there for moral support. The first step is always the hardest.

Keep posted to my blog for Part 2 of this post. Don’t forget to subscribe, write/e-mail to The Ellen DeGeneres Show and give the Facebook page a LIKE ( https://www.facebook.com/helpencopresissurvivorseeellen?ref=hl ), and let me know how you go.

Do you have any suggestions? Have you shared your story with anyone else and was it helpful in gaining confidence in yourself and social confidence? Take care,

Dimity

Being creative

Hi to all my readers out there,

How are you? What have you been up to? How’s your Encopresis going? During this weekend I’ve been busy writing my book, planning a few things and designing some T-Shirts with positive messages (and Encopresis related ones too). At the moment I have only ordered one (will include a photo on the Facebook page: https://www.facebook.com/helpencopresissurvivorseeellen?ref=hl ). I will be holding a promotional Give Away event as well, keep an eye out for it (and a later option to purchase them if you so wish).

In early April I have a full on physical circus week, with Ruth Battle coming to town to teach some extra aerial/hula hoop lessons. Combining the extra classes with regular circus training and gym training with a personal trainer…you get the idea. Soon I’ll have the script to rehearse with, for my role in a TV series, called “THE SPARROWS”. Will keep you posted on that development when the time comes. Planning and working on a YouTube video for Encopresis awareness (especially as an Encopresis survivor).

What have you all been doing this weekend? Take care. Stay strong. YOU are not alone anymore.

Dimity

What to pack for Encopresis emergencies

Hi everyone,

How are you today? As school has returned for the year (in Australia), I thought I would share with you some of my suggestions of things to keep handy for Encopresis emergencies. These tips may need to be adjusted accordingly for your son/daughter and be age appropriate.

A plastic container (as above) is portable, discreet and easy to clean.

When I was at school, I had a plastic bag handy (in my school backpack) that held:

  • 1 spare pair of clean underwear
  • a spare plastic bag to hold the soiled underwear separately
  • spare change of clothes,
  • spare women’s sanitary pads/pantie liners

My main problem was at my worst with Encopresis, I would change my soiled underwear for the clean one…and that would get soiled with no spares. To make sure you don’t get stuck with this I would highly suggest that you keep several pairs handy. I always got changed in the bathroom and wrap any soiled underwear in toilet paper before putting in plastic bag and disposing (or wait til come home and soak/wash it). Another tip is after changing (or doing any “number 2” bowel movements), wash hands thoroughly and put on some perfume/cologne (as mentioned earlier this may change depending on the age of the child/teenager/adult. Encopresis smell does linger, so ideally get changed as early as you can.

If the soiling is light/medium, changing Sanitary pads (or pantie liners) can be really helpful to remove any initial mess. If the stool is runny/soft it would leak around it occasionally. I personally prefer the ones with “Wings” on them (it holds it in place on the underwear and stops leaking). Still change the underwear when convenient.

School and especially bullies can become tricky around this area. If your parents can advice the school/school nurse of what is happening I would HIGHLY suggest that (and make sure they are aware of it throughout the year, incase they forget). Neither of my schools was aware of this condition (in a previous post I shared the story of my worst day with Enco and how the school handled it). ERIC UK have done school awareness programs, something I’m grateful for and hope that other countries do the same. Keep it discreet and the Encopresis pack discreet also. No one knew that I had the pack, apart from close family. One thing the bullies never knew about or had access to.

Other products available are Snap Lock bags (very useful), which you can substitute for the plastic bag initially mentioned. Baby wipes (and other wipes) are also something handy to have in the pack to wipe up any messes/hands. Soap & water is preferred but wipes are a suitable alternative. Just make sure that they don’t dry up (over time the alcohol dries up). There are small and large packs available. Remember to include a small portable hand sanitiser bottle/cream.

When I had Encopresis and at the comfort of my own home, I would sit on the toilet and read a book/play video game (or course wash my hands after and make sure the product is clean/sanitary). I’m not someone that can pee/poop on demand/under pressure. I love to be able to read or think about something else and just give the body time to do it’s “business”. Might take half an hour, might be more or less. However long it took, while relaxed and focusing on something else..trust me, it makes a world of difference. Positive difference. Perhaps in your Encopresis pack you/parent can supply a book/iPad (small). Just a suggestion.

If you haven’t created an Encopresis pack before, I highly recommend that you do now. Have you done this before? Do you have any recommendations for other parents out there? If there was a pack available (or a customisable pack), would you buy/use it? I’ll organise it if there’s enough demand for it. Don’t forget to Subscribe to this blog for more tips, tricks and inspiration. Also don’t forget to LIKE the Facebook page (and share it around): https://www.facebook.com/helpencopresissurvivorseeellen?ref=hl

Take care everyone and have a wonderful weekend ahead. I’m always available via e-mail: naturegirl015admin@themagicwithinus.com

Dimity

P.S. “With an open mind, and an open heart…anything is possible”

Help Encopresis survivor, Dimity, to get onto The Ellen DeGeneres Show

Hello to all my readers out there. Happy Valentine’s Day (or “Singles Day” for those that are single). For those of you that are aware of this, one of my biggest dreams as an Encopresis survivor is to share my story and help those of you with it. When I was suffering in silence with Encopresis, I always wanted to find another person whom has it. Throughout all my years of it, I never saw a single person (apart from the guy whom is like a brother to me) or celebrity open up about it. No role model to look up to, no one that I could relate with. I don’t want anyone else with Encopresis to suffer in silence. I am here for you all.

The Ellen DeGeneres Show inspires so many people (including myself) to do great things and help others. Some of her guests on the show have inspired me and hearing their stories brings a smile to my heart (especially when Ellen works her magic). Thank you everyone for sharing your stories, both on there and e-mailing privately..it means so much to me. Here is a previous article about inspirational stories: http://themagicwithinus.com/2013/09/18/i-love-inspirational-stories-and-how-they-change-peoples-lives/

I have recently created a Facebook page called “Help Encopresis survivor, Dimity, to get onto The Ellen DeGeneres Show”. Please help me to help you. With your support of LIKE-ing the Facebook page, and sharing it around, the more word together we can spread about Encopresis. The Ellen DeGeneres Show touches the lives of millions of people around the world, it only takes one person to make a difference. “Be the person you wish to see”. Please. Help me. Imagine how many Encopresis suffers are watching the show, wishing someone on there that they can actually see and communicate with, and is able to actually watch the show and know someone that is. I’m an Encopresis survivor. I know how embarrassing it is to have this condition, and feel the sting of being bullied and treated as a loner. I also know how amazing it feels to be able to connect with another Encopresis survivor. YOU are not alone anymore!! Ellen DeGeneres inspires millions, touching their hearts. With your support, we can inspire many more.

The link to the Facebook page is here: https://www.facebook.com/helpencopresissurvivorseeellen

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

Or if you really want to, you can use the online application form for The Ellen DeGeneres Show directly (please include my blog link and Facebook page): http://www.ellentv.com/be-on-the-show/399/

For those that want to write a physical Fan Mail letter to the show, and this campaign, the address is here:

 

The Ellen DeGeneres Show
PO Box 7788
Burbank, CA 91522
ATTN: Fan Mail

United States of America

Have the most amazing weekend everyone. Thank you for reading. Please help spread the word and share it. Feel free to comment and say hi or share your story. Take care and thank you everyone.

Dimity

P.S. Always “Be Kind to one another” (~ Ellen DeGeneres)

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

The bright side to having Encopresis – the expansion

In a previous entry I wrote about my top 11 positive things I have learnt from my personal experiences with Encopresis (entry here: http://themagicwithinus.com/2013/03/30/there-is-a-bright-side-to-having-encopresis-my-top-10/ ), and this post is an explaination of each one. Feel free to comment and share your thoughts and stories.

1) You are not alone (even when you feel you are).

Throughout my life with Encopresis I always felt alone as I didn’t know anyone else (apart from a guy I grew up with) that did what I did. Not a single person, friend, celebrity, fictional character, role model…nothing. Even in the modern techonological era we live in today with the Internet and Social Media outlets, it is really hard to find and connect with other fellow survivors/battlers willing to open up (and the majority of those that have are on old abandonded forums). It is a huge relief and a wonderful feeling when I realised I’m not alone. There are others in this world with this condition (or had it) and exist. If more of us Encopresis survivors, battlers and the parents open up, maybe we can encourage more to open up and reach out. Talk to me (or e-mail me: naturegirl015admin@themagicwithinus.com), I’m here to help and be there for those that need it. I know how much it means the world to find and communicate with another that knows exactly what it’s like to have Encopresis or know someone going through it.

I  now regularly  communicate with several Encopresis survivors/battlers and the parents since I began my journey last year joining groups and opening up (James Parkin is an Encopresis survivor too and you can read his blog here: http://writingfrom7.blogspot.com.au/2012/12/my-shameful-childhood-secret.html ). The more I talk to others the more I learn about it too from the parents angle, so thank you for sharing your story too.

2) Even though I may stink (with Encopresis) it’s others attitude that stinks more.

One of the horrible side effects of having Encopresis is losing friends because you stink. The few friends I had I am grateful for as they never once complained about it or acknowledged it (maybe I didn’t actually have soiled underwear when around them). I understand how hard it is for families (and those with Enco themselves) to not take negative comments to heart about stinking, having a bad parenting style (obviously you aren’t bad parents so don’t ever blame yourself for it) and other misconceptions because society in general doesn’t know what is going on. I’m not a bad person, I just had a medical problem that wasn’t diagnosed. It’s hard to be a strong and confident human being when those around you aren’t interested in who you are. Some of the negative comments I have heard personally or from the stories others have shared are so horrible, and that really stinks.

3) The body’s urge to go “number 2″ is never taken for granted.

It’s as simple as that. While I had Encopresis I rarely got any indication (if at all) I “had to go”, and when I did it was already too late (by a few hours). Now that my body is more regular and I actually do get that “so obvious” signal to go, I can recognise the difference. I will verify that if your child says he/she can’t feel it…to believe him/her. No one believed me then (or now), but based on the little indication I had I was speaking the truth at the time..my body’s indication of the truth. I have 2 previous entries about this here: http://themagicwithinus.com/2013/03/23/is-being-suddenly-cold-a-sign-of-the-body-needing-to-go/ and http://themagicwithinus.com/2012/07/09/is-it-true-your-child-cant-really-smell-or-feel-that-heshe-had-an-accident/ .

4) If you have a diet allergy/sensitivity, Encopresis can be a sign that something is wrong.

There are several parents in the Facebook group I’m in whom have come to the conclusion that a food sensitivity/allergy is contributing the Encopresis. Gluten and dairy being the main culprits.  Here is a blog from one parent about this particular topic (and I will expand more about this in my book): http://www.momsguidetoencopresis.com/

5) Encopresis can help strengthen a family bond, not hinder it.

I’m fortunate to have a loving, supportive and caring relationship with my family, reguardless of my Encopresis. It never stopped us from doing things and enjoying life. Don’t let Encopresis stop you too from living your best life. Many parents have found that by opening the communication with the child (and children), everyone can understand how everyone is feeling and if something hurts or not. I’ll expand more on this in a new entry (and in my book). What are your experiences?

6) ) You can be whomever you wish to be and not let Encopresis define who you are.

What does this statement mean to you?

7) Your true friends are there with you now, reguardless of if you stink or not (those that disappear truely aren’t your friends).

You’ll know who they are are in your life, and if not then you’ll know that too. For me I have redifined who my “friends” are and whom are not.

8) I am here opening up, talking and being there to those that need someone to talk to (my book and blog, Facebook, Twitter, e-mail)…because I had Encopresis myself.

As mentioned in my the first statement, what I’m doing now is something I wish was available when I had Encopresis. “Be the person you wish to see” is a phrase that speaks very true for me, and my goal/dream now. You can e-mail me: naturegirl015admin@themagicwithinus.com , Follow me on Twitter @naturegirl015 and you can LIKE my Facebook page: https://www.facebook.com/themagicwithinus?ref=hl . I’m always here to chat about my experiences (and yours) or a shoulder to cry on. To find and communicate with someone that has this condition or a parent of someone that is means the world.  The more families I can help and the support, the more love I can share. 🙂

9) There are more support groups, communities, charities (ERIC UK), information and more…all at your fingertips via the internet and word of mouth.

Although I’m not affiliated with ERIC UK, I am honoured to help them as best I can and be included in their campaign “Lets talk about Poo”. ERIC UK is a not-for-profit Charity in the UK that specialises in Incontinence & Bedwetting in children (see link here:http://www.eric.org.uk/). I highly recommend them and they are a very friendly organisation.

If you know of any that I don’t, then please let me know and share your stories/experiences with them.

10)  There is light at the end of the tunnel…I’m living proof it can be a past medical condition, and here if you ever need me.

I’m not the only Encopresis survivors out there, you can be one too. 🙂

11) One day I’ll be on the Ellen Degeneres Show sharing my story, my book (and blog) and my love….a role model for those with Encopresis.

The first statement has this one in mind and heart. Who knows how many more lives can be saved or inspire when on The Ellen Degeneres Show.  I always love it when Ellen shares inspiring stories of obstacles people have gone through and what they’re doing now in helping others. She inspires me in so many ways (also Dean Cain and Doctor Who have a huge impact on me and my life). I dream big. Please click on the link, fill in the form and spread the word (Link here: http://www.ellentv.com/be-on-the-show/666/). Thank you.

For many years of my life I always referred to Encopresis as a curse (and I’m sure there are others that feel the same way). Now I want to turn it into a blessing in disguise. Remember: “With an open mind, and an open heart..anything is possible!” (my saying). What are your thoughts on all this? 🙂