Stoma Care for Children

I am 6 1/2 years into being a parent of an ostomate and 2 years being one myself (for the second time around…. Check my story out here if you’d like to know why). Having half the family with an ostomy means going anywhere needs planning and preparation. Fail to plan – plan to fail as they say…

When I was pregnant with my little man my sister gave me the best advice, to make sure I have a box of changing supplies and essentials upstairs and downstairs. Little did I know he would be born with Hirschsprung’s Disease like me, requiring an ileostomy at a few days old. This meant that box grew much bigger, and I set up an ostomy changing box and station both upstairs and downstairs. It might seem a bit excessive, but at one point losing 4 litres of stool a day and having no colon for absorption of water meant a lot of bag leaks and carpet cleaning. Like a tap that couldn’t be turned off, there would have been no hope running upstairs to Jake’s room to change his bag. The stairs would have changed colour very quickly! No stairs were harmed during this time I am pleased to say. As for the living room carpet RIP. You were good to us but my gosh you had a battering! The loss of 4 litres output a day thankfully changed and a new carpet we now have. Anyway… I digress..

Ostomy bag changes

At home since Jake was born I have always had 1 kit downstairs in good old IKEA Pax boxes with all that was needed for an ostomy bag change. This included all the changing essentials for a baby during the earlier years too. A change of clothes and hand toys that could be used as a distraction during bag changes was included. As for upstairs I upgraded to a craft trolley from The Range instead of another box when I had my own stoma surgery. It’s great for taking between rooms and when I was recovering avoided the lifting and carrying.

Dealing with a high output

When going through the weaning process and introducing new foods, with a stoma it isn’t as straightforward as it is for most. Well let’s face it, it isn’t straightforward for anyone, but with a high output ileostomy it was a mind field for us. Output rocketed and some foods his stoma didn’t like and bag leaks were several times a day. It wasn’t the appliance that was wrong, but the sheer volume and watery consistency that even a breeze block couldn’t have stopped! No one could give me any suggestions and quite simply I felt like I was spiraling as I couldn’t help him despite whatever I tried. During my monthly calls with Respond our dispensing company, one of the representatives suggested ABSORB Odour Neutralising Absorbent Gel and it changed EVERYTHING! These little capsules of magic solidify output. By popping a few into the pouch after each empty the leaks stopped overnight. It is incredible how one product can be so vital and life changing, and in that moment it really was. It is not easily available on prescription, but if your child has a high watery output I would recommend you fight until you get it. No child should have to suffer in that way, and if your GP still says no contact your stoma nurse and see what they can do to help.

Personalisation 

Bag covers are a great way to add interest and personalisation to a child’s ostomy bag. There are some individuals on social media that produce them and they are available to purchase through independent sellers through websites such as Esty. They can be made according to the child’s bag type with sellers requesting your bag type and providing a choice of fabrics to choose from. I have made some myself by being lucky enough to have a sewing machine following teaching Textiles a few years ago. For some children they aren’t bothered by covers or deem it important, but if you feel your child would enjoy the prospect they are definitely something to look into.

Buttony Bear is something I was given by our stoma nurse when my little ostomate was a toddler. I remember his little face when he saw it. It was as if he couldn’t understand what he was looking at. Until then every cuddly toy he had seen didn’t have a stoma, then to suddenly see one that was like him, well he loved it. Representation comes in all forms and this was his and it was perfect. This Christmas I am going to attempt to adapt an Eddie the Elf to have a stoma. We usually have two so they get up to some mischief together so if one has a stoma can you imagine the pranks with an ostomy..!

Books & resources

There are a few books and resources that I have discovered along the way which I would highly recommend in the form of story books, activity books and colouring books. Pelican  have a beautifully illustrated story and activity book illustrated by Michelle Robinson which I have printed several times to do with my little man. There is lots to do and only a click away, free to use as many times as you like. A new release by @creativepatient on Instagram is a colouring book for IBD sufferers. Despite this, the illustrations and discussions of the physical and mental struggles are relatable to those of who have other chronic bowel diseases such as my son and I. Jen the creator very kindly sent me and copy and it is a special project I will complete with my boy together to navigate his acceptance as he gets older. My favourite books for bedtime include ‘Oscar the Unstoppable: A story about Hirschsprung’s Disease‘ by Simone Rist and Miranti Kayess, ‘Awesome Ollie‘ by Dawnette Meredith and Brittney Meredith, and ‘Wearing a Colostomy Bag‘ by Harriet Brundle.

Online community

Finally, reaching out to other parents of ostomates and Jake seeing other children online has brought comfort and relatability. Me being a Mum has also meant he is lacking a male role model with a stoma, which is where some of my lovely male friends in the community have been kind enough to send him video messages and show them they are just like him. There is no typical time someone can need ostomy surgery, and no two individuals are the same. Being born needing one in the first few days of life has its benefits but also its negatives. I find myself constantly researching closed ostomy Facebook groups and charity websites to see if there is anything new that could be used as a supportive resource. Maybe your child has something they want to do to help others in a similar position. Have a chat with them and see what they suggest. The world is your oyster!

Until next time, Rach @gutsy.mum x