Guest Blogger: A personal request to share his story (via e-mail)

Hey everyone,

Recently I received an e-mail from a 40 year old man, from California (United States of America) whom has personally requested that I share his story, and has given me permission to do so. It has been written in 2 Parts.

WARNING: This is TMI (Too Much Information) personally shared story. If uncomfortable, please look elsewhere.

*NOTE: BM is Bowel Movements.

This is his story, shared in his words.

Part 1: 

I’m single white male, late 40s,California

Began having constipation issues age 14,diagnosed with mega-colon,encopresis,and anal fissures.i would go potty every 3 to 6 days,causing extremely large BMs.
Doctor told my mom to give me a FLEET enema once a week to help.me go potty easier.
So I got embarrassing weekly enemas from my mom age 14 to 22,but the enemas did help a lot.tried diet changes and exercise ,but only enemas helped.
At 22 I moved out but struggled with constipation still ,at age 28,I moved back in with mom after dad died.
I had to start getting enema again from Mom just to get to work.
Mom decided to try FLEET mineral oil enemas at age 28,mineral oil enemas helped me pass the hardened compacted bms I had, better then fleet saline enemas I got in my teens.
I’m embarrassed to admit I STILL get weekly enemas from Mom or my aunt
End part 1.
Part 2:
Part 2 of my story is when I moved back in with mom in my late 30s,I had mega colon diagnosis,and had to get weekly fleet mineral oil enemas
End part 2.
Thank you for being brave, opening up and trusting me by sharing your story. There is light at the end of the tunnel.
You are not alone.
Thank you for reading. If anyone YOU wish to share your story, send an e-mail to: naturegirl015admin@themagicwithinus.com
All my love,
Dimity
www.themagicwithinus.com

We are Survivors

On my quest for research for my book about my experiences (and information), I stumbled upon this site:

http://www.healthlinkusa.com/hlu_92182_1_survivor-of-encopresis-aspx

It’s written from another encopresis survivor (whom I want to get into contact if I can). She talks about her experiences and how it affects her now many years later. Her and I both understand how hard it is, especially when the parents try and do what the doctor’s recommend, but some things don’t work. Punishing no matter how frustrated you can be is NOT the answer and will do more harm than good (especially emotionally). Those of us going through encopresis do not choose to have it, infact we wish it’d stop too but we don’t know it’s even happening until it’s too late. How are doctors going to know what it’s like and some effective ways of treatment or dealing with this condition unless you truely listen to someone that has personally gone through it? You might not like what you hear (for example, while some children respond positively to suppositories others find it far worse and suffer emotional trauma later on), but at least those of us survivors can truely understand what your child is going through and what she/he wishes you to know. Communication is very important, and has to be both ways. If parents ask the child what it’s like or how he/she wants to be treated (and other questions), perhaps you can come up with a conclusion yourself.

I do agree about how self esteem and confidence has been affected because of  the punishments (for a crime not intentionally committed, and uncontrolled). It’s worse when accused of lying about the accidents when to me, the girl in the link, and others say the same thing…for us it is the truth. When that’s the type of response you get for telling the truth, sometimes lying might be the better option (I don’t think that now, but as a child of encopresis be aware of it). I also agree that with the different groups out there for parents to chat and share experiences with encopresis, us as the survivors/patients need our own group too. Maybe I can create one.

Parents might not like what they want to hear on this very touchy and emotional medical condition…but if you truely want what’s best for your child, we have more answers and a willingness to speak up.

Stay strong!!

My heart goes out to all the parents out there whom are struggling with their children and encopresis (enco). I understand how frustrated you must be, how alone you feel, how you want what’s best for your child and unsure what the next move is. I’m sorry I can’t offer much more at this stage except my love, support and advice (for those that want it), but I’m not giving up on doing more. So much awareness needs to get out, and a book (or 2) out about this as well.

I don’t want you to feel alone and powerless. Be strong. For those with enco…you aren’t alone. I’ve got your back. I’m here for you. It’s a hard journey, but worth it in the end (doesn’t mean it’s easy, but definitely why you are very strong and a survivor). This may be a short entree, but it’s full of love and support. Together we can make things better. I’m new to what it’s like from the “other” side of this condition too and the new treatments out there. For those parents wondering if there is an end to the condition…I’m living proof there is. I’m an encopresis survivor. Be strong and love your children for who they really are (not how the condition wants you to see them). You aren’t alone. It will be ok.

Stay strong.

With an open mind, and an open heart…anything is possible! Remember that. xx <3

I am not as alone as I thought I was

After recently joining a Encopresis group on Facebook (https://www.facebook.com/groups/211406189068339/), I am realieved that I’m not as lone as originally thought.

There are some misconeceptions about what is actually happening. One involves assumption that the child is “lazy” or not want to go toilet, when in reality he/she does not know why. When our body doesn’t give us a strong indication of “needing to go” and our smell receptors can’t actually smell it….as far as we know nothing has happened. To the rest of the world, we have. Parents (and enco kids) can be rest assured that they will grow out of it in time. I did, and that’s why I call myself a Encopresis Survivor (if you can be a cancer survivor why not be a encopresis survivor??).

The poem (and a previous entry) titled “I am just a girl” is an insight into how one feels inside with it.

It’s socially taboo to talk about it (not to mention smelling of it), and yet there are children suffering alone and in silence because of it. I may not know all the answers, but I will share what I do. I’m here for you. E-mail me anytime at naturegirl015admin@themagicwithinus.com

My love to you all!! xx Never give up parents, but please be patient.

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