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

A list of Encopresis books (those that I currently have)

Hi everyone,

How is your weekend going? Below is a list of Encopresis books that I currently own (book copy), and will review in a future blog post including where they are available to buy. If there are other physical books on the subject available that you know of that aren’t on this list and am interested in a honest review, feel free to mention it in the comments section or e-mail me: naturegirl015admin@themagicwithinus.com

List of Encopresis books:

  • A Girl Like You: A story for older children who soil – British Edition (Author: James Parkin) (Publisher: Amazon Digital Services)
  • Stool Withholding: What To Do When Your Child Won’t Poop! (Author: Sophia J. Ferguson) (Publisher: CreateSpace Independent Publishing Platform)
  • The Ins and Outs of Poop: A Guide to Treating Childhood Constipation (Author: Thomas R. Duhamel, PhD) (Publisher: Maret Publishing)
  • Scared To Poop: A Guide To Overcoming Constipation And Stool Withholding In Children (Author: Kathleen M. Diehl) (Publisher: Gateway to Being)
  • Solving Children’s Soiling Problems: A Handbook For Health Professionals (Author: Jackie Bracey) (Publisher: Churchill Livingstone)
  • Constipation, Withholding and Your Child: A Family Guide to Soiling and Wetting (Author: Anthony Cohn) (Publisher: Jessica Kingsley Publishers)
  • Elimination Disorders in Children and Adolescents: Advances in Psychotherapy, Evidence-Based Practice (Authors: Edward R. Christophersen & Patrick C. Friman) (Publisher: Hogrefe Publishing)
  • Clouds and Clocks: A Story For Children Who Soil, Second Edition (Author: Matthew Galvin, M.D.) (Publisher: Magination Press)
  • It Hurts When I Poop!: A Story for Children Who Are Scared to Use the Potty (Author: Howard J. Bennett, M.D.) (Publisher: Magination Press)
  • Bladder and Bowel Issues for Kinds: A Handy Guide for Kids Ages 4-12 (Author: Janet  A. Hulme M.A., P.T.) (Publisher:Phoenix Publishing; 1 edition (June 2003)
  • I Can’t. I Won’t. No Way!: A Book for Children Who Refuse to Poop (Author: Tracey J. Vessillo) (Publisher: CreateSpace Independent Publishing Platform (October 31, 2011)
  • The Un-Constipated Gourmet: Secrets to a Moveable Feast. 125 Recipes for the Regularity Challenged (Author: Denielle Svetcov) (Publisher: Sourcebooks, Inc.)
  • Poop: A Natural History of The Unmentionable (Author: Nicola Davies) (Publisher: Candlewick Press)
  • Softy the Poop: Helping Families Talk About Poop (Author: Thomas R. DuHamel, PhD) (Publisher: Maret Publishing)

What do you think of the list so far? What are you most interested in reading a review of? What are your favourites? Are there any others that need to be included?

I hope this list helps. Don’t forget to keep an eye out for my book. Enjoy the rest of the weekend and have the most amazing week ahead. Take care,

Dimity

Encopresis survivor communication

Hi to all my readers out there,

How are you all doing? How is your weekend? Thank you for the e-mails, comments and posts and sharing your family story and experiences. I really appreciate it, respond and am here for you. As an Encopresis survivor myself, I know what it feels like to feel so alone with no one to talk to whom has gone thought it and open to talk to. Someone existing and real, someone that soils underwear with no idea why, someone that I can relate to. I’m here for you all.

I am available, open and interested in talking to your child/teenager/adult. Whether it’s on the phone, e-mail, writing a letter and creating a video message on YouTube. It doesn’t matter whether your child is 4, or in his/her 60’s. If receiving a personal letter from Santa Claus at Christmas time brightens up your child’s life, I know what it would be like to receive letters though out the year from a fellow Encopresis survivor.

I will give my postal address/phone number for the families that request it. The best ways to contact me are posting on my blog directly,

e-mail: naturegirl015admin@themagicwithinus.com

Facebook: https://www.facebook.com/helpencopresissurvivorseeellen

Twitter: @naturegirl015

YouTube: https://www.youtube.com/user/naturegirl015

Enjoy the weekend everyone. Stay strong, be yourself and never give up.

Dimity

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”

Does Encopresis mean bad parenting?

For many of the parents whom have children with Encopresis, a common thought that I hear a lot of is wondering if it’s a result of bad parenting. It breaks my heart when I hear this. My own parents have also been accused of being a bad parent or to not have brought me up right. This is a majorly bad assumption. My parents raised me correctly and I’m proud to be their daughter (only daughter).

Due to the many different (and many unknown) triggers of Encopresis, it’s very hard to pinpoint what exactly is the individual’s trigger. For some families it’s a food sensitivity, moving house, death in the family (or other traumatic experiences) or simply something wrong with the body. Sadly not many people (including fellow survivors) open up publically about the condition, leaving others in the dark and feel so alone. Myths and misconceptions breed including false accusations from people that don’t truly understand Encopresis. Everyone’s story and experiences are unique.

Each child responds differently in different situations, and respond accordingly. Parents do as best they can with all the love and support within them. Encopresis isn’t a result of bad parenting, and it never will be. As a vocally proud Encopresis Survivor, I will support all parents through this condition as best I can (including supporting fellow battlers and survivors). If you as a parent is reading this blog, please be rest assured that you are NOT a bad parent. Encopresis does not mean bad parenting and I stand by that. It’d be easier if my parents knew what was happening, but that’s not what happened. They aren’t bad parents. They love me and support me. This is what a parent does. It’s not their fault my body wasn’t working properly. Only a small percentage of people in the world are diagnosed (and not diagnosed officially) as having Encopresis. If I’m not at a certain developmental point in my life as I “should” be, how come I have been measured with a societal standard that doesn’t know anything about personally having Encopresis?

You are not bad parents (nor are the parents that have raised you if you are an Encopresis Survivor/battler with this). I’ll go onto The Ellen DeGeneres Show (if she’d have me) and verify that Encopresis does NOT mean, or result from, bad parenting. I’m here for you. There is light at the end of the tunnel.

What are your thoughts on this? Have you been accused of being a bad parent because of Encopresis? How does it make you feel?

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