Telling A Child About Ostomies

Can be a hard subject to broach whether it is for yourself or the child. I recently have had a few parents message me and ask me a bazillion questions which is totally fine and exactly what I’m here for! I have personally been through what it is like telling or let’s be real here trying to tell a toddler what a stoma was and why mummy was having it.

But I obviously don’t know what it is like to tell a child that they are having a stoma first hand. You may have seen my video with Ra-Ra and her shock at children having stoma’s; she told me later that she “actually didn’t know kids have stoma’s” bless her.

I have done a bit of research into what is available out there to help parents and children facing ostomies. In reality I think the older the child is and the parents are the ones who need more reassurance. Let’s face it kids are incredibly resilient and tough little mites. We tend to project our learned fears and worries on them. Which is totally natural to do but it is pretty unnecessary since as long as we are positive that our lives won’t be affected (it seems to be a minority of people that stoma’s don’t improve their lives) and we can start living again!

Let’s start off with the bears with stoma’s for your child!

There are Buttony and the Stomawise Bear; Ra-Ra has both and loves them both. Recently we received a birthday card for Buttony that was designed by children from all around the country. Ra-Ra has taken Buttony to Cornwall with us back in August which we were able to tweet with other Buttony Bear owners.

Both the Buttony Bears and Stomawise Bears are a charity based bear to help children either having a stoma or their parent is. Both bears can have specific ostomies or similar to allow children to not feel alone. I found that they were extremely handy in explaining “What mummy will have after her operation.” I found out from my Cardiff trip last month that Pelican provide the bags for the Buttony bears at least.

Next up the colouring books!

Now the Urostomy Association unfortunately doesn’t do a colouring book as of yet at least. But I’m sure with the rise of younger and younger urostomate’s that may change. However the Ileostomy Association and the Colostomy Association or Colostomy UK as it now is known by both have colouring books. It is one of these that Ra-Ra was given by my stoma nurses. Granted she was 2.5 years old at the time but I received some for this post and she is enjoying them now. They have activities and explanations where everything is positive which I think is imperative for children to know that their lives won’t be affected completely. 


Ostomy bags for children!

Back at the Pelican factory I got to see the ostomy bags they do for children and neo-natal babies. It did hit home that anyone can have a stoma including babies but they were able to have little patterns put on them which were super cute. I would contact the different companies and ask for the children samples so you can show your child and allow them to try them on before they have a stoma. Which can help with the initial shock when they wake up. Now I understand that sometimes these operations are emergencies so you don’t always have that option.

Ostomy bag covers!

In those cases you can always order some bag covers my favourites are from Stoma Style and you can have them in any material that fits them and their personality. Does your little one like cartoons, super heroes or animals amongst others I’m sure Lisa can sort you out! Even seasonal ones are available to buy when the holidays roll around.

Charities aimed at children with ostomies:

The Breakaway Foundation work with parents and children with stoma’s to show them that life doesn’t stop, they also have the opportunity to meet others with stoma’s so they know that they aren’t alone. They help from birth to 18 and do a range of events from family weekends to “only kids allowed!” events where kids 11+ get to have some time away from their parents and gain independence, confidence and self care. It is the only UK wide charity to help support children with bowel and bladder dysfunctions/diversions.

A charity I have only just been introduced to is the International Children’s Ostomy Education Foundation. They have their own take on the bears which are puppets and the difference between these and the bears is that the children or adults can talk through the puppet. Children can use these as a sounding board when they feel sad’lonely or can tell adults their feelings when the child themselves is too scared too. There are six different puppets and you can add NG Tubes, Hickman Lines, Left and Right stoma bag, Mitrofanoff, Mic-Key Button, Intermittent Catheter, Peristeen and ACE. There are colouring pages and a recipe book.

Colostomy UK also have a support helpline for parents or carers of children with ostomies called J.O.S.H which is simply Junior Ostomy Support Helpline the number is 0800 328 4257 and is manned 24 hours by people who can either give you support or guidance. If necessary you will be redirected to The Breakaway Foundation.

Do you have a child with a stoma? How did you talk about the subject? How did you tell your child about your stoma if it is you that has one?

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