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

 

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 and beyond (4 Questions asked)

Hey everyone,

How are you all doing? I wish to give a huge warm welcome to all my new subscribers (and Thank You).

I was asked recently via e-mail from a parent, about my experiences with Encopresis with a different angle. Below are the questions, and after that will be my responses to them. I hope it helps you all, for those that need it, and feel free to post your thoughts to them or e-mail me: naturegirl015admin@themagicwithinus.com

1. At what age did your parents decide to let you take responsibility for managing your Encopresis on your own?

As a young child and more importantly as a teenager, I was given a plastic bag with a spare change of underwear (and can use the bag to put the soiled underwear in until home). However one spare change isn’t enough when that gets soiled literally as soon as it’s on (smell always lingered). After being constantly bullied when at the school bathrooms, I wouldn’t go in them during school hours unless absolutely necessary (ask your son/daughter about this), and never felt comfortable in there. My stools are very large (thanks to having Encopresis), that they have been known to block the toilet. Blocking the toilet in a public place is very embarrassing and highly increases low self esteem and very self conscious to the point of avoiding it. As a teenager (13 years old), I was old to put my dirty underwear in a bucket of Napisan (stain remover, in the laundry) to soak, which I would do. However when the underwear had the skid-mark type hard stools (and worse), then was yelled at and made to scrub it. This constantly made me cry my heart out to empty ears and very angry & disappointed with myself (as was everyone else). Admittedly and ashamedly this also led me to throw my underwear in the bin in secret to avoid the pain of going through it all, and survive and be a “normal” person. I was later found out (obviously had less underwear in the laundry), but it didn’t stop Encopresis or the emotional pain. Having the spare underwear handy is good and discreet at the time (not so discreet when people can smell it, except me). I wasn’t ever officially diagnosed nor had any X-rays/scans that are available now. I was also given a daily stool softener, Paraffin Oil (before dinner, and water after). It tasted yummy and makes me happy to think about it (it did from time to time give me Diarrhea or leave a oily residue). Did it make a difference? Honestly and in my personal experience, I definitely say YES! My bedroom was extended at age 15, when we did home renovations, and I was given my personal ensuite (and TV in my room), this also made all the difference…and the year I noticed my Encopresis had stopped.

2. Were you able to stop withholding cold turkey or did you still withhold and have the occasional accidents?

See above about personal ensuite/TV installed. I wouldn’t say that I “stopped withholding cold turkey” because I didn’t know that this was happening. No one, not even my parents, mentioned my clean underwear for a significant period of time. No one noticed, not even me. It was an advert on TV or a story or something I heard that when I thought about it was like, “Oh I stopped soiling…cool”, and then continued living.

3. Did you have an epiphany moment when you decided to change? What was that moment and what triggered it?

As mentioned previously.

4. Do you consider yourself to be completely free of Encopresis or do you, as an adult, still catch yourself withholding and take appropriate actions to avoid getting backed up?

Yes I do consider myself Encopresis-free..I’ve referred to myself as an “Encopresis Survivor”, and proud of it to admit it. If you or someone you know is Encopresis-free, then you’re an Encopresis survivor too. Keep in mind I will never say that I am in remission, of Enco (might explain this in another post). Admittedly I can’t pee/poop “on demand”, and this also means that I have difficulties to go successfully (go and not “get the urge but can’t physically go Now”) on the toilet on long haul flights. Sometimes I will get the pain in my abdomen for a few days (after long travel), but this eventually disappears after appropriate action has been initiated. I do continue to have large stools, although go more regularly (doesn’t have to be daily…it’s normal for me to NOT do a “number 2” daily). I prefer to poop at home/hotel.

Thank you for reading my blog. Please let me know in your comments below if you found it useful, any tips for others and what your thoughts are on this.

Don’t forget to subscribe and keep up to date.

Check out (and LIKE) the Facebook page: https://www.facebook.com/helpencopresissurvivorseeellen

or e-mail me: naturegirl015admin@themagicwithinus.com

Have a wonderful day, keep smiling and stay strong.

Dimity

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

Never Give Up!!

When I was a little girl in Year 1 (or Year 2) at school, I heard a song that wasn’t ever forgotten. I was staying overnight at a friend’s house (at the age of 6 years old), and her & I were dancing. It was the chorus to “One More Night” by Phil Collins that truly touched me. At the time I never knew what the name of the song was or who sang it, but I never gave up on it.

Growing up, no matter where I was, that song was there. At the age of 11 years old, I remember hanging out at the hangar where my dad worked and hearing it on the radio. I would listen intently waiting to find out the name, but no such info was shared. As an early teenager I would go to the music shop, but no one could help me there either.

It was at another sleepover (with a different friend), as a 15 year old, that I found out the name. It was on a karoke DVD (the title) and when I played it, the tune matched the song. I never gave up on it. After I came home, I Google searched it, downloaded what I thought was it, listened to it…and cried. It had found the song that never left my heart, had a name and brought back the happy memories of when I first heard it. A few years go when I was in a chemist/pharmacy in Singapore, it was on the radio. I wouldn’t leave the shop until it finished. That song is very sentimental to me. It also shares an important message.

The message: Never give up!! I never gave up on a song when all I had was the tune of the chorus to go by. It took many years, but I found it. No matter what you are going through, including Encopresis, NEVER GIVE UP.

One day I’ll get onto The Ellen DeGeneres Show and talk about Encopresis. I can’t give up, I won’t give up.

Stay true to yourself, never let Encopresis stop you from being and achieving whatever you want to. YOU can do it. I believe in you.

Dimity

Being creative

Hi to all my readers out there,

How are you? What have you been up to? How’s your Encopresis going? During this weekend I’ve been busy writing my book, planning a few things and designing some T-Shirts with positive messages (and Encopresis related ones too). At the moment I have only ordered one (will include a photo on the Facebook page: https://www.facebook.com/helpencopresissurvivorseeellen?ref=hl ). I will be holding a promotional Give Away event as well, keep an eye out for it (and a later option to purchase them if you so wish).

In early April I have a full on physical circus week, with Ruth Battle coming to town to teach some extra aerial/hula hoop lessons. Combining the extra classes with regular circus training and gym training with a personal trainer…you get the idea. Soon I’ll have the script to rehearse with, for my role in a TV series, called “THE SPARROWS”. Will keep you posted on that development when the time comes. Planning and working on a YouTube video for Encopresis awareness (especially as an Encopresis survivor).

What have you all been doing this weekend? Take care. Stay strong. YOU are not alone anymore.

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”