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

Quick note: Blog will be down for a few days (may see some disruptions)

Hi everyone,

How are you all? This is just a quick note that my blog is in the process of being transferred to a self-hosted website and may be down for a few days. Please be aware of certain links not working or receiving an error message. This is only temporary, while the blog is being upgraded.

The site may look different once it’s complete. This is part of the blog expansion I had mentioned earlier (and will include more features).

Stay tuned, stay safe and thank you for reading. Take care,

Dimity

P.S. I’ll still be contactable at the other social media links (Facebook, Twitter and e-mail: naturegirl015admin@themagicwithinus.com ), while the site is being upgraded.

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

 

The D Free device

Hi everyone,

How are you? Are you looking forward to the weekend ahead? I am. Here is a link to a story about a device currently being developed in Japan to help detect “movement”:

http://www.abc.net.au/news/2016-04-29/poo-app-save-users-from-embarrassing-accidents/7369562

It looks discreet from the photos and its description of looking like a small cake of soap, made from plastic, and be worn under clothing. It doesn’t appear to be aimed for children with Fecal Incontinence (Encopresis or Chronic Constipation), but aimed at the ageing population.

The D Free device (refer to article)
The D Free device

The article mentions the ability of sending a text message to the recipient of the need to go to the toilet and preventing accidents. What happens if, hypothetically,  you don’t have any movement in 10 days or more because of being blocked up (in my personal experience), and your phone battery is flat? Something to think about. I am aware it is in the prototype development stage at this point in time.

What are YOUR thoughts on this device? Share them in the comments below.

Take care everyone and enjoy your weekend.

Dimity

Trouble In The Schoolyard (contribution to BRIDGE magazine)

Hi everyone,

How are you? Last year I was approached by the editor of BRIDGE magazine (a magazine published quarterly by the Continence Foundation of Australia. Link here: http://www.continence.org.au/ ), to contribute an article for them. The topic is  how myself and another Encopresis survivor, survived  years of Fecal Incontinence and schoolyard bullying.

Bullying at school is hard enough in itself (and will blog about them) without Encopresis making it worse. My favorite quote in the article is this:

“I suppose it was good in a way, having the accidents – at least I know who my true friends were” (~ Hannah Brown).

What do you think about it? Do you agree? I’ll blog about my thoughts on this statement in another post.

The link to the article is here (Page 4 & 5):  http://www.continence.org.au/data/files/Bridge_2015/Bridge_Summer_2015.pdf

I do have the editor’s permission to include this article and the magazine on my blog, and book. Thank you Continence Foundation of Australia for the opportunity to contribute to the magazine, and look forward to doing so again in the future. For more information on the Bridge magazine, here is the link: http://www.continence.org.au/pages/current_bridge.html

Take care,

Dimity