“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

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

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.

“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.

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.