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

Guest Blogger: IMPRESS (Incontinence Management and PRevention through Engineering and ScienceS)

Hi everyone,

How are you? Today is my first ever Guest Blog post. Thank you to the team at IMPRESS (Incontinence Management and PRevention through Engineering and ScienceS) for all your hard work and dedication with #Incontinence research, and I look forward to collaborating with you more in the future. Here is what they’re all about and where you can find out more information.

Take care everyone,

Dimity

IMPRESS (logo)

About IMPRESS

IMPRESS (Incontinence Management and PRevention through Engineering and ScienceS) is a UK research project funded by the Engineering and Physical Sciences Research Council (EPSRC) and the National Institute of Health Research (NIHR). We are based in the School of Mechanical Engineering at the University of Leeds and co-ordinate IMPRESS in collaboration with the Applied Biomedical Engineering Group at University College London.

Our aim is to bring about a radical change in the research and development activities in incontinence technologies.

Why are we doing this?

Firstly because incontinence impacts significantly on quality of life for thousands of patients and it places a massive burden on the UK National Health Service (NHS). Secondly because where many areas of medical engineering share a growth in the engagement of research engineers and scientists to push forward the exploitation of emerging technologies, incontinence receives little attention within this sector and consequently current technological interventions remain limited in their function and effectiveness.

How are we doing this?

Since IMPRESS began in 2014 we have been facilitating the education of 20 Incontinence Technology Advocates, researchers chosen from the engineering and science community, about the current clinical challenges faced in treating and managing incontinence. We are using their knowledge and interactions to create a Self-Sustaining Network of patients, healthcare providers and engineering and science experts that will stimulate collaborations towards novel technological solutions for incontinence. To feed these new collaborations we have funded a first round of five pilot projects whose concepts encompass both urinary and faecal incontinence and may ultimately lead to a next generation of treatments and management products for this condition.

Where are we going next?

IMPRESS recently received further funding to continue its work until 2018 with a substantial budget to support more pilot projects, to develop selected projects into early-stage research work and to fund an IMPRESS Research fellow.

Results from our FI Workshop

In February 2016 IMPRESS ran a faecal incontinence workshop which focussed on ‘Technologies for Incontinence: What can we do better?’ Our delegates were a mixed audience of healthcare professionals, academics, patients, carers and industry representatives and we asked them to bring their personal experience and expertise to discuss this topic to help identify areas where we should focus future research. Four basic themes emerged.

PEOPLE who could benefit from new technology

Children, young adults and those with physical impairments are not well catered for. Many products don’t consider the complexities of designing for children and there are few options for those with limited dexterity or spinal cord injuries.

TECHNOLOGY how it influences people’s quality of life

It has the ability to empower, to address stigma and taboo with discreet solutions, and it has the potential to make assessment, treatment and management methods less invasive.

PRODUCTS where technology could be improved

Many products have seen little innovation for decades and issues such as skin irritation, smells and leaks are still a significant factor for patients.

POTENTIAL area for new technologies

It’s clear that much could be done to incrementally improve existing products through improvement in materials, applying smart systems that could sense, monitor and feedback, and by developing data collection tools that can assist patients and inform healthcare professionals.

Website: http://www.impress-network.com

Twitter @IMPRESSleeds

 

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

Help Encopresis survivor, Dimity, to get onto The Ellen DeGeneres Show

Hello to all my readers out there. Happy Valentine’s Day (or “Singles Day” for those that are single). For those of you that are aware of this, one of my biggest dreams as an Encopresis survivor is to share my story and help those of you with it. When I was suffering in silence with Encopresis, I always wanted to find another person whom has it. Throughout all my years of it, I never saw a single person (apart from the guy whom is like a brother to me) or celebrity open up about it. No role model to look up to, no one that I could relate with. I don’t want anyone else with Encopresis to suffer in silence. I am here for you all.

The Ellen DeGeneres Show inspires so many people (including myself) to do great things and help others. Some of her guests on the show have inspired me and hearing their stories brings a smile to my heart (especially when Ellen works her magic). Thank you everyone for sharing your stories, both on there and e-mailing privately..it means so much to me. Here is a previous article about inspirational stories: http://themagicwithinus.com/2013/09/18/i-love-inspirational-stories-and-how-they-change-peoples-lives/

I have recently created a Facebook page called “Help Encopresis survivor, Dimity, to get onto The Ellen DeGeneres Show”. Please help me to help you. With your support of LIKE-ing the Facebook page, and sharing it around, the more word together we can spread about Encopresis. The Ellen DeGeneres Show touches the lives of millions of people around the world, it only takes one person to make a difference. “Be the person you wish to see”. Please. Help me. Imagine how many Encopresis suffers are watching the show, wishing someone on there that they can actually see and communicate with, and is able to actually watch the show and know someone that is. I’m an Encopresis survivor. I know how embarrassing it is to have this condition, and feel the sting of being bullied and treated as a loner. I also know how amazing it feels to be able to connect with another Encopresis survivor. YOU are not alone anymore!! Ellen DeGeneres inspires millions, touching their hearts. With your support, we can inspire many more.

The link to the Facebook page is here: https://www.facebook.com/helpencopresissurvivorseeellen

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

Or if you really want to, you can use the online application form for The Ellen DeGeneres Show directly (please include my blog link and Facebook page): http://www.ellentv.com/be-on-the-show/399/

For those that want to write a physical Fan Mail letter to the show, and this campaign, the address is here:

 

The Ellen DeGeneres Show
PO Box 7788
Burbank, CA 91522
ATTN: Fan Mail

United States of America

Have the most amazing weekend everyone. Thank you for reading. Please help spread the word and share it. Feel free to comment and say hi or share your story. Take care and thank you everyone.

Dimity

P.S. Always “Be Kind to one another” (~ Ellen DeGeneres)

“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

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.