The Right To Go campaign (school toilets and Encopresis)

Hi everyone,

How are you? I hope you’re all going well, and returning to school life (for those that do). I found this picture recently on Facebook about a comic strip of a school and a pass to be able to go to the toilet during class time, as an excuse to do something less constructive. See diagram below:

School Hall Pass for toilet breaks (found on Facebook, 14th February 2016)

I’m not sure if this is meant to be humorous, however it did get me thinking. During my time as a student, going to the toilet during recess/lunch wasn’t a positive experience. The few times I went in there (especially in High School) made me want to get in quick and get out. Bullies in the classroom are hard enough to deal with on a normal day to day basis. Students laughing, gossiping and pressuring me into smoking cigarettes isn’t something that I was comfortable with. It was easier to go at home in peace and quiet. Already self conscious and low self esteem because of living with Encopresis meant that doing anything other than a tinkle was out of the question. Unfortunately neither  of the schools that I attended was aware of Encopresis, and how to treat their students with it.

ERIC UK (The Children’s continence charity) started a campaign in 2014 called, “The Right To Go” to highlight every child’s right to good care for a continence problem at school and to access safe and hygienic toilet facilities. Here is the link to their campaign for more information: http://www.eric.org.uk/Campaigns/TheRightToGo . I truly support this campaign, and plan on collaborating with the schools to help educate them on living with the condition, so other students don’t have to suffer a similar experience. Here in Australia and around the world.

Here is also a link to the “Toilet Tactics Kit” that the Continence Foundation of Australia have available as a resource. Link here: http://www.continence.org.au/pages/-toilet-tactics-kit-411.html .

 

Let me know what your thoughts are on this, or if you have anything else to share. Enjoy the new week ahead. Stay true to yourself, keep smiling and be authentic. @TheEllenShow #BeKindToOneAnother .

Dimity

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.

Don’t forget to subscribe and keep up to date.

Check out (and LIKE) the Facebook page: https://www.facebook.com/helpencopresissurvivorseeellen

or e-mail me: naturegirl015admin@themagicwithinus.com

Have a wonderful day, keep smiling and stay strong.

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

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)

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? 🙂

Why I’m opening up

For those that have been reading my blog, then you will know that I am an “encopresis survivor” (“enco-survivor” for short). I thought I would share my reasons.

When you have this condition, you feel so alone. I know I did. Understandably there are parents (including my own) whom also felt alone. It’s not their fault, it’s not mine and it’s not anyone else that has this condition or is the family of someone that is. Growing up, I had very few friends, but finding someone else that has this condition is something I craved. I will admit there is a guy I grew up with whom I’m sure had this too, but I respect his privacy, but apart from him I knew no one else.

I live in a town of 15,000 locals (55,000 in the tourist season). I also live remote. The internet wasn’t around at the time, so no forums, “googling” or anything like that. It was hard on my parents, and afterall this I still love them and we’re very close (rest assured parents that enco won’t affect your relationship with your child, it shouldn’t anyway).

For many years I always felt that my stinking condition was my “deep dark secret”. Whenever anyone asks me my most embarrassing moments, anthing to do with encopresis and what I went through will NEVER be brought up. I never laugh at the joke that people use about “pooping themself” when scared or wearing “brown pants”, etc as this is actually teasing the life that I lived through. When your body functions properly and gives you the distinct indiction “to go”, people think it’s common sense to go…they can’t understand what it feels like when THAT particular feeling doesn’t exist (or very small), and no one believes you. Bullying is hard enough.

There wasn’t anyone on TV that admits to having this condition (I had to research it myself about 4 years ago, it wasn’t on the Dr Phil website then….it is now), not in magazines or anything. I haven’t come across a single celebrity that admits to have had this condition. Not a single role model to look up to, relating to this. It’s great that celebrities are opening up about being Gay/Lesbian, drug/alcohol abuse, victim of bullying, depression, etc….but what about something a bit more “socially taboo”? (if you know someone point them my way).

There is a saying “Be the person you wish to see”…I wish to see a role model, willing to open up about this condition. Just because I don’t have encopresis now doesn’t mean I won’t talk about it (I couldn’t for a long time but I can now). The more enco survivors open up, the more it can help the current families living through this. Perhaps doctors should listen too, so then they can better help their patients by knowing how others have interpreted different treatments. The things that work for me (and don’t work) I can mention, those that I won’t support..I won’t. I am human, I have my faults. I also have a heart.

Children, teenagers and adults whom have this condition (or had it) need to find others to talk to. I have noticed parents have started numerous blogs and forums (some current, some abandonded) and a few fellow survivors open up too (mostly on abandonded sites), but we crave that connection too. To tell your child “you aren’t alone” isn’t easy to believe unless they can see/hear/read/communicate themselves. It’d be great if I can get onto the Ellen Degeneres Show or Dr Oz, or others to help really open up about this condition. I am currently writing a book about my experiences (and a few others that have been kind enough to share their stories), but if you have any suggestions or questions then let me know.

For many years I kept this a secret, but it was eating me up inside. It was hard initially to open up (most of the people I know probably still don’t know this is something I had), but I have to share my story to save someone. I have cried at night many times because I want to help so much, but can’t. I can write my book (get it published), write this blog, and go from there. I feel better inside knowing that I’m helping someone. Perhaps I can help with any myths about this condition (for example. “why does my child say he/she can’t feel or smell when had an accident?”), who knows. Everyone is different and how they cope/treat is different too. How I experiened it might be different to another person, it might also be the same or similiar to another. The more we open up, hopefully the more awareness we can generate and help others that wish someone would speak up for them. I wish someone had spoken up for me and believed me…but they didn’t. I have to be there for others. I’ll be the role model and the voice, if no one else will!!

I hope that makes sense. I hope it helps. Let me know. 🙂 xx