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”

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.

Write 1,000 good words challenge

A friend challenged me to write 1,000 good words in a week (on a new piece of writing). It was hard initially for me to get that first sentence (or paragraph) satisfactory enough for me to continue writing. After a while I did succeed in the challenge.

As I’ve started and working on my book (including the writing as the challenge to get me properly started and my “writing mojo” back), I have learnt how big a task I have endeavoured upon. This is a important project (I think so anyway) and my heart is in the right place. It’s so complex but seems simple at the same time. I hope I can find that balance and do the book justice, help and support those that really need it.

Something I also found out today was I called the CAMHS people (that many of the parents talk about going to), asking for information about encopresis or what they talk to their patients (and parents) about in the program. I haven’t gotten anywhere yet with that, however one of the executives of the department have passed on my contacts to someone who deals with pediatrics, saying incontinence (or soiling) is medical and not psychological. So basically the department that parents mention going to (that deal with mental health in children) to help their child with enco, pass me onto pediatricians. I know some kids will have their enco triggered as a result of trauma (abuse, adopted, cancer/death in family, divorce, etc). I just found it interesting…

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

ENCOPRESIS – the story of my life (part 2)

I decided to do a second entry about this as some thoughts have come to mind. Like many of the children that have/are going through this, I too used to hide my soiled underwear. When your choices are to be yelled at now or yelled at tomorrow, I chose the 2nd option. I hid them because I wanted to live for an hour (even half an hour) as if it never happened. To be able to live like everyone else and be “normal” was such a dream…I was willing to put up with what I had to, for a chance to not go through it. I threw out several pairs until found out. The truth of my actions made the hurt worse emotionally, but the reality was that I was getting yelled at anyway (that’s how it was interpreted at the time).Yes I’m ashamed of my actions (and stopped doing it when got caught), however I’m not surprised when I hear of other children doing similar things. I can understand where they’re coming from and I can also understand why parents get frustrated about it. It’s not easy but there is light.

Whilst bedwetting in children is more common, widely spoken about and socially accepted it emphasises Encopresis/soiling as taboo. It’s hard on everyone involved when strangers abuse and remove themselves from your presence because of what they don’t understand. The more awareness we can get out there about this condition and everything it entails will help those involved (and uninvolved) understand what’s happening and what it feels like to live with it. Parents need to know what works and what doesn’t, and the children need to know that someone actually truly does love them as a person (even one that stinks).

Someone has to say that you are ok, and have a right to be happy. I wish I was told that. Some parents want a “miracle fix” (understandably but unrealistically) to help their child and live a happier life as soon as possible. Everyone is different and respond differently to the treatments available. What works (or didn’t work) for me may/may not work for you and your situation. It does take time before the body sorts itself out, heals what it needs to and move on. Certain food or allergies have been shown to trigger Enco (or encourage it), trauma in family situations/privacy breach, insecurities, family history of medical problems including  constipation or a colon not working properly. These are some of the different triggers available that should be considered when helping your child with Encopresis. How the family handles and responds to the situation is vital in creating a positive environment and experiences whilst in this tough time, trust me.

Parents if you’re stuck, I’m here to listen and help (e-mail me anytime on naturegirl015admin@themagicwithinus.com) and offer what I can. Let us work together, where it matters. It will be ok. You are ok.

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