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

Alex and the dangers of Miralax (PEG 3350), told by the parent.

Hi everyone,

Below is a story about Alex, a 9 1/2 year old boy, and the day he almost lost his life because of Miralax (PEG 3350). This has been shared by a concerned parent (I have been given permission to also share this) to create awareness about this. Here is Alex’s story:

Alex (awarded by Make A Wish Foundation = PEG 3350). Age = 9 1/2 years old

 

Alex awarded by Make-A-Wish Foundation……………
It all started:
2-14-11 Alex barely made it into the ER before going into septic shock and then
cardiac arrest twice. We are thankful to the St. Frances ER for stabilizing Alex
after 18 minutes of CPR. He was then rushed to Mary Bridge Children’s Hospital and
operated on with us being told he may not make it. In order to save Alex’s
life…they removed his entire colon, appendix and several inches of his small
intestines.
Since Alex was 18 months old; he was placed on Miralax…. After being on doses of 17mg twice or more
a day…. It took until he was 9 1/2 until the unthinkable happened above.

Alex missed a ton of school from not feeling well… He stayed home the week before from just not feeling well. I took him to a naturalpathic doctor to have him tested for food allergies and visited the nurse practitioner who ran the special clinic
on constipation that Friday. What did they do…The nurse practitioner sent us home with a prescription of 17 capfuls at 17 mg of MIRALAX for an at home treatment….You read this right…17 entire doses at 17mg of Miralax within a day or two…that weekend !!!
As soon as we got home from school he started vomiting profusely dark brown substance. We found out later from the ER doctor he was vomiting his stool. Later that night…Alex seemed lethargic and
his eyes started rolling back into his head. His stomach felt like it was going
to explode. I rushed him into the nearest ER only for him to hang on until I
wheeled him into the Hospital for Alex to go into cardiac arrest.
We were then told that there was a strong chance that Alex may not survive during the transportation to The Mary Bridge Hospital. During his transport…once again needing to help him breath…Alex made it to the hospital for the everyone to pray that he would survive his surgery. They said Alex had gone septic and his entire Colon was black and had to be removed along with part of his small intestines that showed partial damage as well. They hospital had to place Alex in a coma since his he was so swollen and the doctors were going to have to go back in for more surgery. My baby…

2-17-11 Alex was then operated on 2 days later…also pulling through surgery.
He is my tough cookie! His blood pressure has been extremely low and recently
stabilized on 2-18. The hospital had to do several kidney dialysis to help
stabilize Alex due to renal failure. He has a couple more surgery’s to undergo before we know what the outcome will
be and to determine him mentally.

For years….I had a terrible feeling that something was just not right with my
son on so much Miralax. I have been reading all the side effects and never realized that the
way my son was acting had anything to do with this medication. Alex was depressed and overwhelmed. He would often be in a good mood and then suddenly the meanest little stinker in the world. He would be loving one moment and then
totally distant the next. Alex had tons of gas he just couldn’t release. My sweet little boy became more challenging as the years went by.

We consider Alex our miracle child…He basically died and was brought back
and survived!

If there are any other cases out there similar to ours…Please help us. I want
to make sure that the nurse practitioner does not make this mistake on any
other children out there.

*For more information and talk to other families, join the Facebook group: Parents Against Miralax (PEG 3350). Link here: https://www.facebook.com/groups/209540745755798/?hc_ref=NEWSFEED 

Or you can share your concerns on this form confidentially  here:

https://docs.google.com/forms/d/e/1FAIpQLScoHP2Mn_5PgSLwNDCIG0C3FdhMjKKL_cRPv9HZ5iUcd7ht7w/viewform

If you are interested in the FDA Petition Update: Polyethylene Glycol 3350 Laxatives and Children, click here:

https://docs.google.com/document/d/1oA9dKatIQW7Lo3uLpP_7Oh3bFc5nC-ryNl3BBSB9IgA/edit

Dimity

What I’ve been up to recently

Hello everyone,

How are you? What have you been up to recently? For the past few months, I’ve been involved in rehearsing and performing in 2 huge local productions onstage, working (it’s the busy season here for 6 months of the year, tourist season) and meetings about future projects.

The first show, performed in July, is called “Worn Art Revamped: Poppy – Child of the Lane”. This is the 2nd installment in a 3 show trilogy. It involves creating costumes out of literally anything (for example plastic bags/shopping carrier bags), circus performing, dancing and voice overs. Bellow are some photos (photography by Steve Cutts Photography):

worn-art-2016-x-girls-2
Worn Art Revamped (2016): X-Girls (girl in Yellow wig = Bluey Louis)
Worn Art Revamped: Poppy - Child of the Lane (2016). Costume: 7 Celestial Sisters
Worn Art Revamped: Poppy – Child of the Lane (2016). Costume: 7 Celestial Sisters

The second show, recently performed in September, was the annual Sandfly Circus show (including a solo Aerial Lyra/Aerial Hoop routine). No photos uploaded at the time of writing this entry.

Now that the busy season is trickling down, it’s time to focus on the other areas including updating my blog and other projects.

What have you done recently? What’s inspired you the most?

Thank you for reading and enjoy the new week ahead.

Dimity

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

 

“When they gotta go, they gotta go” (article)

Hey everyone,

How are you? I hope you are all safe, healthy and happy. I found this article posted online recently about a 2 year old boy experiencing a “poo explosion” at the shops, in public. I don’t know if he has Encopresis or not, but the moral of the story is what I love. Here is the link to the article:

http://www.kidspot.com.au/parenting/real-life/reader-stories/mum-rescued-by-shoppers-as-her-son-delivers-almighty-poo-explosion?utm_source=facebook&utm_medium=post&utm_campaign=editorial

Everyone in that shop was kind and very empathetic in helping the family with the clean up and waiving the bill. After reading this article and how the parents can see a happy side to it all (and how the general public handled it too) it makes me feel happy inside. This is more preferable than to be yelled at or be told that I was “an embarrassment to be out in public” with during my personal experiences with Encopresis. I wish I was there to lend a hand and support.

At the end of the article it says this:

As for advice for other parents who find themselves the victim of a public poo explosion, Amy says try to remember that it will be funny … one day.

“You’ll get through it, even though it doesn’t seem so at the time, and at least you’ll have a good story to tell at their 21st Birthday!”

The Encopresis journey may be hard now, but it does get better. There is light at the end of the tunnel. You are not alone anymore. Let me know what you think about this. What are your thoughts/experiences? Tell me below or you can e-mail me: naturegirl015admin@themagicwithinus.com

Stay strong, happy and never stop being who you are inside. Take care and enjoy the weekend,

Dimity

 

The Right To Go campaign (school toilets and Encopresis)

Hi everyone,

How are you? I hope you’re all going well, and returning to school life (for those that do). I found this picture recently on Facebook about a comic strip of a school and a pass to be able to go to the toilet during class time, as an excuse to do something less constructive. See diagram below:

School Hall Pass for toilet breaks (found on Facebook, 14th February 2016)

I’m not sure if this is meant to be humorous, however it did get me thinking. During my time as a student, going to the toilet during recess/lunch wasn’t a positive experience. The few times I went in there (especially in High School) made me want to get in quick and get out. Bullies in the classroom are hard enough to deal with on a normal day to day basis. Students laughing, gossiping and pressuring me into smoking cigarettes isn’t something that I was comfortable with. It was easier to go at home in peace and quiet. Already self conscious and low self esteem because of living with Encopresis meant that doing anything other than a tinkle was out of the question. Unfortunately neither  of the schools that I attended was aware of Encopresis, and how to treat their students with it.

ERIC UK (The Children’s continence charity) started a campaign in 2014 called, “The Right To Go” to highlight every child’s right to good care for a continence problem at school and to access safe and hygienic toilet facilities. Here is the link to their campaign for more information: http://www.eric.org.uk/Campaigns/TheRightToGo . I truly support this campaign, and plan on collaborating with the schools to help educate them on living with the condition, so other students don’t have to suffer a similar experience. Here in Australia and around the world.

Here is also a link to the “Toilet Tactics Kit” that the Continence Foundation of Australia have available as a resource. Link here: http://www.continence.org.au/pages/-toilet-tactics-kit-411.html .

 

Let me know what your thoughts are on this, or if you have anything else to share. Enjoy the new week ahead. Stay true to yourself, keep smiling and be authentic. @TheEllenShow #BeKindToOneAnother .

Dimity

Happy New Year 2016

Hey everyone,

How are you? Did you have a magical Christmas and a great start to the new year? I did.

I want to thank you all for your support, love, feedback and e-mails. You are not alone anymore.

This is the year to implement the new changes to the blog as part of its branding and evolvement, including new opportunities and monthly competitions, product reviews (including books) and welcoming my guest bloggers. Enjoy the journey with me. Keep an eye out for updates about my book and how it’s progressing.

The first of the month will be the start of new competitions, giveaways and/or a book review (it will vary throughout the year).

Always keep smiling and enjoy your life. Stay strong.

Thank you,

Dimity

P.S. “With an open mind, and an open heart, anything is possible.”