A Facebook group for us (Encopresis survivors & battlers)

Ever since I have started my research on this condition, I haven’t found a single group dedicted for us with enco to communicate with. There are several forums, Facebook groups and blogs created by and for the parents to communicate and share experiences, but not one for us.

I have created a Closed Facebook group (closed so only members can read comments/add posts) where we can communicate and open up and share our experiences with encopresis. The link is here:

http://www.facebook.com/groups/250860305044481/

The group is called: “I’m an Encopresis survivor (or will be)”. If you have had Encopresis and are shy to talk openly to others about it, this is a group where only us can see. If you currently have encopresis then this is the group for you too. “You aren’t alone” is really important and by finding other members, we can create a community. To find at least 1 person that knows exactly what you are going through (or had) that you can communicate with openly means the whole world (feels like that to me anyway), and who knows how many more we can help in the process.

Please spread the word so others can join in the group. Take care and be strong. xx

Encopresis – the story of my life (Part 1)

me as a young child

For 15 years (undiagnosed since birth) I suffered from a medical condition that is rarely spoken about. The name of this condition is called Encopresis (“Enco” for short).  What is Encopresis, you may ask? Encopresis involves children, teenagers and adults that soil their underwear past the commonly referred to toilet training age (usually above the age of 5 years old). The indication “to go” to the toilet is rarely felt when someone has Encopresis as the nerves in the bowel (especially the rectum) become desensitised. As enlarged stools become blocked in the intestines, any watery or softer stools leak through and soil the underwear by literally going around or over the blockage. The more people (including myself) open up and share our experiences with Enco, hopefully the less taboo it will be.

Although approximately 1-10% of the population have the diagnoses of Encopresis, there are unfortunately more cases unreported, so I am unable to give a definite statistic. Different countries have reported different percentages that I have found it hard to sum it up in this blog.

For many years (even after Encopresis) this was something about me I always considered my deepest dark secret. Neither of my parents knew what it was or why I soiled my underwear (although I’m sure they realised something was wrong with me to continue soiling when no longer toilet training), however I was at the receiving end of their frustration. I don’t want other children/teenagers/adults of Enco to continue suffering and feeling alone (as I did) because no one is willing to open up completely about their experiences.

I have gone through almost everything from being bullied at school (with no friends and treated as a loner and an outsider), yelled at in public and at home from parents (I understand why now, but I didn’t then), no one believing me when I said I couldn’t feel/smell myself (therefore accused of lying when to me and my body I was telling the truth), I had suppositories/enemas and stool softeners, treats/charts/silly dances and cheap toys (rewards when I had successfully excreted in the toilet). Even teachers at school allowed the kids to bully me and say I stink, and put me in a separate classroom on one of my worst days (and be yelled at home after school). I have been punished and made to clean my soiling underwear. You get the idea. Fortunately I was never in hospital for Encopresis and it breaks my heart when I read/hear about children that have. I refer to myself as an “Encopresis survivor” (a term you can use yourself) now and here to share my story. There is light at the end of the tunnel, I’m living proof that there is a point in life where the body sorts itself out physically and Encopresis becomes a thing of the past. Here in my blog I will share my experiences, things that have helped/things that have hindered me, what I have learnt from my experiences (and what others have learnt). In my blog I will also share other personal experiences in my life from my travels overseas, good times/bad, my performing life and everything else in between.

Not a single person told me I was ok, that I’m not a bad person, when I had Encopresis. I felt so alone (having no real friends or social life didn’t make it any easier) with this condition, as did my family. That’s why I have made it my mission to help others, support them and get the message out there. “Be the person you wish to see”, comes to mind. I have to be the role model/hero/inspiration for those of us with it….because I wished I had someone to look up to when I was going through it. But I didn’t. I still don’t. I love my family, even now. If my parents knew what I’m sharing now then maybe life might’ve been better. That’s why this means a lot to me. Come with me on this journey and together we can help create awareness.

For anyone reading this, I’m happy to answer your questions, offer support (and heart) to those suffering alone (and feel so alone). I want to turn this curse into a blessing. I’m an Encopresis survivor and here to show you how.

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