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? 🙂

“It’s a power struggle” (- quote from Dr Phil)

Today (here) I have just watched something gut wrenching on the Dr Phil show. In an episode called “Biggest Mistakes you don’t know you’re making” (original broadcast date 11/24/09), there was a family whom have a son with Encopresis. Ironically I get a season in Australia that’s 3 years old, but I’m lucky I saw this one.

The boy (at time of broadcast) is pre-school age (3 years old I think) poops in his pants. Dr Phil commented that it’s a “power struggle” with the boy winning, and that comment has really upset me. If you have been reading my blog so far (thank you if you have) then you’ll know by now that I am an Encopresis survivor. Something that Dr Phil never mentioned in this particular episode is that their son (the parents on the show) has this medical condition. Dr Phil admits he doesn’t know much about it (even though he has had a previous family on the show with Encopresis, and mentioned it, in 2007). Dr Phil never had enco, nor Robin and neither has his own sons had it. The more I hear stories like this the more inspired and dedicated I am to complete my manuscript and get it published.

I wanted to so much to hug the boy and tell him he’s ok. Ironically Dr Phil hasn’t interviewed in the episode mentioned any survivors (such as myself) for opinions/thoughts/advice nor any “experts”. I can’t let these children suffer because of the myths and misconceptions. I’m understanding how hard it is for the parents in this situation, but I feel it more to how the children/teens/adults feel whom have (or have had) this condition. I have just measured my blood pressure and pulse, both are high (pulse measured at 75). I’ve also been crying my heart out.

If Dr Phil genuinely thinks this is a “power struggle” does that mean that what I have been through (punishing, yelled in public, no friends, no social life, bullied/stabbed/work stolen/things thrown at me, etc), is that meant to be intentional?? If the medical aspect has been looked at (for example chronic constipation or spasdic colon) then perhaps there may be something else involved (especially after talking to some of the parents on Facebook). However NOT every Encopresis child has a power struggle and Dr Phil didn’t acknowledge that. Something that is correct that Dr Phil says in the story is this:

“You’ve got to make sure that he knows that you love him unconditionally, so don’t withhold love and support.”

 Definitely keep this in mind and heart, my dear readers. Let me know what you think.

Here is the link to the website with the story: http://drphil.com/slideshows/slideshow/5439/?id=5439&showID=1360

For those interested here is the  link to the only other previous story on the Dr Phil show about Encopresis (I haven’t seen this episode myself. Dr Phil does seem more forgiving in this story and the comments from the public aren’t. However what he said in this link, he didn’t say to the story mentioned above that this post focuses on):

http://drphil.com/slideshows/slideshow/3908/?id=3908&slide=0&showID=916&preview=&versionID

I have to help and I’m here to help. I’m willing to do anything and everything I have to for these families. My book is written from a survivor…an Encopresis survivor. xx

My worst day with Encopresis

think outside the box

I thought I would share with all my readers what I consider to be my worst day, I ever had, with Encopresis (yes it’s included in my book). It’s all true and as close in detail as I can remember. It was the year 2000, and I was 13 years old.

My day began like every other. Waking up, getting dressed, breakfast, etc (the normal morning routine). School started at 8am. The first period went ok far as I remember, however it “started” by second period (which was science). For the entire hour of the lesson I was trying so hard to concentrate on whatever was being taught, but I kept on having everyone around me (in a class of 30 students, you do the math) sneering at me. Saying horrible things like “you stink”, wiping their noses in that “you stink” way, snarling their nose up. It was horrible. I couldn’t smell myself (nor could I feel it so I have no idea when I soiled my underwear, and no spare clothing/underwear). When recess was on, I spent the entire time alone and crying. Recess might’ve only been for half an hour, but for me it was forever. The next 2 hours of other lessons (maths & english I think) were no better.

After lunch was Indonesian. I work very well by myself on a task (which is a good thing), shows how reliable I really am and teachers trust me. However the teacher put me in a separate room by myself (in the little office next door) for the rest of the day (an hour’s lesson). It was then that I could smell myself, but only a little. I didn’t know how bad the soiling was, nor could I do anything if I could. What choice did I have? The worst fear was knowing I was going to be in deep trouble (and a few unchoice words) when mum was going to pick me up from school. I can’t remember why I was asked to be in the separate room, I can’t remember the excuse the teacher used except something to do with the comments about me.

Siren rang for end of school. I told mum what happened…she support them, not me. ‘Poo you stink” she said. Raising her voice. “Why do you keep doing it?” “I’m sorry. I don’t know why”, but my tears couldn’t save me. No one did that way. “No wonder people are embarrassed to be near you. Why didn’t you have spare clothes?” (I didn’t have any with me that day…unfortunately the truth doesn’t set you free, it imprisons you). Home we go, my crying my heart out. The anger and horrible look in her face, and the disgraced horrible look on everyone else’s faces. If you can imagine that, you’ll have a smidget of an idea how I felt and went through that day. All alone.

Home we go, off to put clean underwear and clothes on. Initially put soiled underwear to soak (really heavy too, just my luck), and then scrubbing it by hand til it was all gone as best I could. Every time I had to scrub and clean it, as punishment, everytime I cried and hated it. I hate it so much!!

I still had to do my homework, and go back to school the next day (it was a Tursday). The things I have learnt from all this:

1. Always make sure your child has a spare set of clean clothes, and several spare sets of clean underwear (and plastic bags to put them in).

2. Let the school know what exactly is happening (especially if your child has been diagnosed with Encopresis and you know what it is).

3. Teachers should be stopping the bullying, not encouraging it.

4. Believe in your child with Encopresis…your child isn’t going to lie too often about it, it’s too painful.

5. Why couldn’t that day be a Saturday?

6. I love my family, and I don’t blame them for how they handled it. xx

I’m an Encopresis survivor…and this is my story. My story about my worst day with Encopresis. 10 years later that one day still hurts. I don’t want anyone else to go through this alone.

Feel free to e-mail me: naturegirl015admin@themagicwithinus.com

You know you are an Encopresis child when…

Below are 10 different ways of knowing whether you are an Encopresis child or not. You know you are an Encopresis child when…

1. Certain people’s attitude stink more than you do.

2. You have more bullies than real friends.

3. Bedwetting is socially acceptable, but the opposite is considered socially taboo.

4. No one appears to understand and you feel so alone.

5. How you smell on the outside is not how you are as a person on the inside.

6. Punished for something out of your control is hard to forget.

7. Having a social life is hard to have when no one wants to be social with you.

8. Why me? I didn’t choose this, how is it my fault? Please love me.

9. You physically can’t feel/smell yourself and no one believes that as the truth.

10. You wish and dream that you’re normal, happy and people love you.

There are more but let me know what you think. 🙂

Your Support Team (you are never alone)

You are never alone in life. It may feel that way at the worst times, but you aren’t alone. You have your support team. If you want to lose weight or get a healthier perspective in life you have your personal trainer, doctor/nutritionist, and a select few family & friends along the way. If your child has encopresis, you need to make sure you have a support team too.

I have heard from parents asking (even begging) for help, support and love and feeling like there isn’t anyone there. Even doctors/psychologists won’t always completely understand enco and what is involved (some will, some get their training from what the person taught them). I’m not a doctor nor do I claim to be, however I am someone that has personally had encopresis…and willing to tell the tale. I am here. I am a part of your support team.

Your support team needs to include professionals (doctors, nurses and others), teachers/school (if your child is currently attending school) and support from your family & friends. You may not get everyone you need, you may have to swap people to create that unique team. You may need someone that will let you cry your frustrations out and come up with a plan (ideally don’t get angry at your child, no matter how frustrated you feel….I will share what that feels like in a later post). If having treats, books/games or even a silly dance helps your family come together and create toilet time one of the best times, then that’s what you need too. For me personally (and whilst I had enco myself), I have learnt that by having a book or video game to occupy my mind, my body can relax and help to pass the time while trying/pushing to poop. I will also explain more in another entry.

If a doctor tells you to yell/punish your child and it’s a “mental problem”, and some have told parents this from what they have shared with me (including other suffers/battlers/survivors of enco), you have to ask yourself honestly if you feel that’s the right response or not. If you feel that punishing your child isn’t making any difference, or don’t like the idea of that…then definitely try something else.

It’s hard enough to convince society (or the school system at least) that this is a medical condition that exists and very rarely spoken about. You want the school to be a safe haven for your child (with and without enco), and trust me, it gets worse when the teachers bully you (as they did to me), isolation and allow the other peers to bully your child. It is one of the most horrible experiences of enco, and emotionally isn’t a good thing, and is also not fun to come home and get similiar treatment at home (not their fault, I just wish they knew then what I know now..it might’ve helped me, hopefully it can help you). If people aren’t willing to help and support you, or try to understand the condition, then you have to do what’s right and remove them from your support team.

I hope this makes sense, if not you can tell me. Let me know what you have in your support team, why you have/have not what you do, etc. I’m here to be a member of YOUR support team, whether it’s an e-mail (naturegirl015admin@themagicwithinus.com), on Facebook, Twitter. If you need someone to talk to or share ideas/experiences, then I’m here. I will always be here. You are never alone!! xx

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

How I overcame my fear of talking to strangers on the phone

For many years I was teased/harrassed from bullies from school on the phone. It was hard for me to listen when people I couldn’t recognise was saying bad things, laughing, calling my name in a teasing way, etc. Overtime I developed a fear of calling/talking to strangers on the phone. I was fine talking to my family, friends or other people I knew…but I didn’t have the courage to actually call a business or be like a receptionist and answer the phone.  For me it was more of an anxiety than a proper fear (heart racing, butterflies in my stomach, occasionally mumble my words). To simply “just call them” wasn’t something I could do as I would rather use e-mail or some other non-personal form of communication to get by.

A few years ago, I saw an episode on the Dr Phil show and it had someone that was scared of the phone. He suggested that she call businesses randomly (and make some sort of excuse to call them) to help create that courage to use the phone. For me, I would make sure I had a cup of tea beside me, have a dialogue in my head that I would say and rind myself that the person I’m calling doesn’t know me or my history (or encopresis) or anything like that to bully me…they’re there to answer my questions, etc. If I received a call, it was visa versa. Overtime that helped me. As I have more positive experiences now from calling businesses (and receive calls from strangers), my confidence is improving. It also helps that I don’t go to school now and don’t get bullied (rarely bullied anyway). I have less anxiety now when I make calls (and I call more people now).

It’s great to know that with simple steps it is possible to face your fears and anxiety and do them until the fear disappears. It is an example of “mind over matter”. 🙂

What fears or phobias have you overcome??