Ostomy and J-pouch moms

 

 

Although I am not someone who had a stoma and then had children, my story is the other way around, but the reason I joined this lovely group was because I had IBD whilst being pregnant. I just thought it might help someone on there who was considering getting pregnant before surgery.

Ostomy and j-pouch moms is a fantastic group for anyone considering stoma or j-pouch surgery and having children. There is a lot of support on there with others who have experienced this, so are used to all the questions.

Tara started the group in Canada and here is her story….

I’m from Toronto, ON, Canada. I was initially diagnosed with UC at the age of 17. I gave my IBD the best fight I could, through prescribed medicine, natural medicine and diet. I eventually decided my best option for a life outside of the hospital and chronic illness was surgery to create an Ostomy. At the time of my decision, I was diagnosed with crohns and colitis. The pathology of my removed colon showed a definitive crohns diagnosis. Months later, I decided to make it permanent and had the Barbie butt surgery.

Life has been good with an Ostomy. For years I decided it was my personal business that I had an Ostomy. Only some friends and family knew about it. I worked, traveled, swam, danced and dated and married. I thought since I was doing so well, maybe I could help others that weren’t, so I went to an Ostomy Toronto meet up. It was at that first meeting that I met some amazing ostomates that became good friends. The more meeting and events I went to, I made more friends that had been through what I had been through. I never knew I needed them in my life. I also met a lot of amazing colonless peeps online. I decided to “come out of the bathroom”, and I made a public post about having an Ostomy. I started volunteering for Ostomy Toronto, I wrote regularly for the newsletter, spoke to nurses and became a proud advocate.

Years before my husband and I started trying to conceive, I was worried if it was even possible to become pregnant. I had a friend do a google search for me. She found an article that was short and basically said it was possible. Through Ostomy Canada Society, I also made friends with other Ostomy mothers and had them share their stories with me. I also spoke with a GI and some stoma nurses, who all confirmed it was possible. When my husband and I were ready to start a family, through a fertility doctor, we found out that I had scar tissue around my Fallopian tubes. Our doctor said our best chance of getting pregnant was IVF. Thankfully, the first try took. Our daughter is now 4.

When I was trying to get pregnant and when I became pregnant, there was no specific support group for women with ostomies. I asked around in various groups on Facebook. So many questions were left unanswered. At 8 weeks pregnant, I decided to start Ostomy and Jpouch Moms. I added all the women I had met that far, who were moms, ostomates and jpouchers.

HOW UTTERLY CUTE IS SHE?

It was so great to have these ladies at my fingertips. I also never thought it would grow as much as it did. I have also added 4 admins to help with adding members, deleting spam posts or overly negative(even bullying comments) and to help with posts that get members interaction. While some hurtful comments aren’t always caught or deleted, we do our best to keep it a positive place. It’s not a group where bully’s post rampantly. With all the negativity on the internet it’s just not tolerated in the group.

The group is close to 2,000 members. While it’s a large number, I can’t help but think, that there are way more women who need to know our group is here to support them. That it is possible to become pregnant with an Ostomy or Jpouch and it has happened for a lot of women who’s doctors have told them it isn’t possible. I started a page called Ostomy and Jpouch Moms Worldwide in hopes that members or even non members would write their inspiring stories, spread more awareness and who knows, maybe some from the medical field will find the page, read features and change how they look at our fertility. I’m always happy when someone wants to be a feature. I also recently started an Instagram account for further awareness.

While I have help from admins, our time is stretched between being Moms, work and sometimes our health. I’m so grateful to those who are willing to help in any way. If any advocates are reading this. Please share with your followers and feel free to contact me directly about spreading more awareness at tara.parkal@gmail.com or send me a message on Facebook.

Please click on the links below to get through to the pages.

OSTOMY AND JPOUCH MOMS

OSTOMY AND J-POUCH MOMS WORLDWIDE

 

International Children’s Ostomy Educational Foundation UK (ICOEF UK )

                                   INTERNATIONAL CHILDREN’S OSTOMY EDUCATIONAL
                                                                               FOUNDATION UK
                                                                                  ICOEF UK

I am amazed that I haven’t heard of this wonderful charity before now , that is why I have decided to help promote what they do for children who have bowel, bladder or intestinal diversions.

These wonderful puppets help children cope with the big changes in their lives due to these surgeries.

Introducing The Gastronauts®

For children who have more than just butterflies in their tummies.

These fun Ostomy puppets help stoma nurses assist ostomate children and parents through their life changing medical procedures.

The Gastronauts were developed by Liz and Phillip Prosser, authors of “Unwanted Baggage”, a resource book for all ostomates.

Here are a few of these lovely puppets.

These individual personalised puppets are for children who have bowel, bladder or intestinal diversions. Each puppet is designed to reflect the child’s own diversion with its own ostomy bag, catheter, gastrostomy tubes etc.

 

This is how it all began……

Judith White, President, International Children’s Ostomy Educational Foundation UK
(ICOEF UK) – www.icoef-uk.com

Life changed for a fifty year old, living in the depths of Mid Wales. Liz Prosser woke up from an operation which left her with a stoma. What was a stoma and what would happen to her from now on and for the rest of her life? She researched the subject as much as she could and found very little to satisfy her knowledge. So, Liz, together with her husband Philip, who are both writers, produced a resource book ‘Unwanted Baggage’, but this wouldn’t help parents of children who had gone through the same experience as herself.The majority of the time Liz was confined to bed. In the evenings, to help to pass the time,
Phillip would sit on the edge of her bed discussing the days’ events. During one of these discussions, Liz said she would like to help mothers and children with bowel and bladder conditions like herself. She had the experience of the operation, the experience of changing her lifestyle. What happened next was to change their lives and the lives of 12,300 children worldwide and all in the space of just six years! Phillip, acting the fool as he does, wrapped a scarf around his arm, made a face with his hand and started talking to it. Liz saw the funny side of this and at that moment forgot her medical condition laughing at her “stupid” husband.

On thinking further, they decided to purchase a puppet and modify it to have exactly the same appendage as a child. Phillip sourced a 15” puppet and one was made for a child in a hospital in Wales. This was a great success and the
hospital asked for another one to be “manufactured” and, again, given to the child. The hospital noticed that the child talked to her puppet, which became a personal friend, as her puppet would not “tell Mummy” of her hurts and anxieties. This puppet was used as a friend to cuddle, a friend to take to bed, indeed a friend to share all her problems with on a one-to-one basis.More and more puppets were made and adapted by Liz, while Phillip sourced the puppets, arranged postage, etc. and introduced a ‘Knit and Natter’ group to help Liz, as demand was increasing at an alarming rate. One day, an email arrived from the USA asking for a puppet.
Liz started correspondence with Janet who now runs things from the ‘other side of the pond’ in the USA. Liz still produced the puppets for the USA, indeed the rest of the world. These would come into her in one’s and two’s which meant she could still have the pleasure of overseeing each puppet.I worked together with Liz on a local newspaper and have kept friends ever since the early days. It was after spending a Christmas with her and Phillip down in Wales I was asked to become involved with her charity. I would be her ‘legs’, running around the UK, doing talks and study days together with manufacturers and charity clubs. We have never looked back.
Last year saw me in Cape Town, South Africa, at the World Council of Enterostomal Therapists (WCET) Congress presenting an abstract on ‘The importance of using puppets as a tool to educate children into their new medical way of life’.
In 2016, the workload was so great that it was decided to divide the world into four main areas. I would control the UK, Janet would look after the USA, while Ruth would run Australia, leaving Liz and Phillip, who moved to France, to set up the EU countries.
The International Children’s Ostomy Educational Foundation UK (ICOEF UK for short) is operated throughout the United Kingdom by five trustees, and a small number of volunteers.
We meet five times a year and more often when major items need discussing. At the last meeting I was elected to President, while John White is Vice President. He looks after the dayto day running of the charity leaving me to oversee the puppet orders. This works well for us and keeps the wheels well oiled.Here in the UK, we have cut down on the number of puppets we can stock as our only source of supply is from abroad. These have to be ordered in massive amounts. The storage of 500 15” small puppets and 500 30” nursing teaching puppets requires a large space. When an order comes in through the post or via the website the details are checked and confirmed.
Each child’s puppet costs £35 to produce, so a donation to help fund the postage and packing is always welcome. The medical ‘bits’ are put into the puppet bag together with the puppet and are sent out to one of our sewing teams. These are collected when completed and the finishing touches added. Each child receives their puppet in a cardboard box, together with a
sterilizing plastic bag, a cloth bag (to carry the puppet to School), a Membership Certificate and a letter from me. Each puppet is numbered and from this number we can identify were the puppet comes from, the child’s name, the procedure and the hospital where it was carried out. On the outside of the box is an A4 label addressing the puppet to the child; not to the
parent, unless requested specifically.
The main problem in supplying children with puppets is Data Protection. We have the puppets to give to children if we can find them. The other problem is volunteers. We need people to be our ears and eyes and to tell parents and carers about our charity and the website.
If parents are informed about the charity, they can then make contact and directly order the puppets from us and this, in turn, avoids any Data Protection concerns.
Since ICOEF was formed, we have helped 12,300 children worldwide and over 2,500 here in
the UK.
There are over 53 reasons why a child may be ostomised. So, please ask yourself, the next time you’re out shopping or on holiday, is that child ‘normal’? I’ll bet you – you will never know.

 

Please click on the link to see more of what this wonderful charity is all about. Judith and her husband are now in their 70’s and are hoping to pass on the care of this charity to someone dedidcated and committed , who is willing to work with them with a view to taking over.

 

 

 

The Gastronauts® are personalised by the trustees and Volunteers of the

 

INTERNATIONAL CHILDRENS’ OSTOMY EDUCATIONAL FOUNDATION UK.