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”

Swimming and encopresis

For me, even when I had encopresis, I never soiled while swimming. I learnt to swim like everyone else, have own pool and swim at the beach. Not a problem for me (I’m not a strong swimmer however). I have noticed I would go to the toilet more after swimming, because the movement obviously helped to move the poo around (physical exercise is recommended by doctors to help the bowels to move along). If I had anything in the swimsuit it was old residue and nothing fresh or unhygenic. I NEVER soiled while swimming.

Any parents concerned or worried about it, I would definitely recommend swimming. Don’t let encopresis control your life (and your child’s life). It’s hard with all that’s involved and how hurtful people are when they misunderstand the situation, but you shouldn’t live your life in fear because of it. If I need to elaborate more on this or any questions then don’t hesitate to let me know. Let the children be free to swim and live a “normal” life. We don’t poop continuously 24/7…there are hours where nothing happens. Maybe go to the toilet before and after swimming.

Don’t let encopresis control your life (eventually you’ll learn to control it). Be strong. 🙂

“Is it true your child can’t really smell or feel that he/she had an accident?”

For the parents of children with encopresis (enco for short), the debate about whether to believe if your child can or cannot feel or smell him/herself is tricky. Do you believe your child is telling the truth, that he or she can NOT physically tell if had an “accident” or smell…or is it just denial? I have read in some websites (in my research for my book) of parents taking their kids to see a psychologist about it, to come back without a solid result. “Your child is normal”…and yet, still soils. Why do we soil? Why do we say we can’t feel or smell it when everyone else says we do??

As an encopresis survivor, I can definitely verify that if your child says he/she can’t smell or feel it or “hasn’t had an accident”…for us, it is the truth. Whenever my parents could smell me and ask if I had done it, and I said no, to check my pants and find out I did…I was accused of lying. “If you know it’s wrong why do you keep doing it?” the screaming mantra of my life, at me, over and over again. Crying each time saying “I don’t know”…because I do NOT know why. I couldn’t feel I had an accident (rarely if I did), coudn’t smell myself either, so far as I knew nothing had happened. Simple as that. It’s not denial and it’s not lying…for me, and others like me with enco, this is the truth. A truth that was punishable. Why do parents teach their children to not lie, and yell and scream at them when they tell the truth…with enco??

This not knowing has been that bad that I had not only school kids tease and bully me saying I smell (for hours), but a school teacher put me in a separate classroom!! Ostracising your child because of a body mal-function isn’t fair. No matter how many times I would cry and appologise and say sorry to my mum for soiling, the constant mantra was “Sorry isn’t good enough”. If sorry isn’t good enough, then what is? What is good enough? Why can’t being your daughter be “good enough”?

There has been research done to verify that due to the nature of encopresis, the hardened stool can accumulate within the intestinal tract that it eventually stretches the wall, numbing the nerve senses. It would be stretched so much that to be able to actually “feel” the need to go would mean the stool has to be physically huge to reach it. And that’s painful, really painful. Some tests indicate that as one is so used to the smell that it becomes ignored. The smell receptors in the nose can’t smell what it should, unless it’s really strong. Why that is I don’t know…all I know is that, with enco this is what I had to deal with.

So to answer the question honestly, YES….it is true your child can’t smell or feel the accident. By the time we know we have done it, it’s already been done. Everyone else knows before we do. Sometimes the wives are the last person to find out about an extra marital affair….the child with enco is THE Last person to know about what’s happened. We aren’t mind readers and in this case, we especially aren’t body readers. This is my story…and I’m not alone.

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