Your child has just had major surgery. You are having to live in a hospital while they recover, and you have a million questions going around in your head about how their life — and yours — could ever look the same again. I know that feeling.

The need for a stoma does not discriminate. It can happen at birth, throughout childhood or in adulthood. The perception that only older people have stomas is far from true, as my own life experience shows. I had surgery at just a few weeks old, then twice more in adulthood, and have since watched my own children go through the same thing.

To say that is heart-breaking would be an understatement. You can’t sugar coat it, it’s awful watching the greatest loves of your life have to suffer and have surgery when they are so little.

Every child is different. Some adapt quickly, while others may struggle with their body image, confidence, friendships, school or the practical side of stoma care. Some days will be easier than others, and that is okay too. I hope that by sharing some of my own experiences, I can alleviate some of the anxieties you might be feeling and show you that there is a way forward, even when the journey isn’t always straightforward.

How can I emotionally prepare my child for stoma surgery?

This is very dependent on the age of your child. For younger children, where a cuddly toy can help make something unfamiliar feel less scary, Buttony Bear is a wonderful resource. Jenny and the team have created a character called Buttony, a bear who has a stoma and a bag.

For older children, conversations and seeing real-life examples can be more suitable through social media. Sometimes seeing someone else with a stoma can be a huge comfort. It can help your child realise that their stoma does not mean they have to miss out.

The medical team should give your child space to ask questions, but don’t worry if they don’t have lots of questions straight away. Be open to talking, listen to their concerns and accept that it might take time. If the surgery is planned, an introductory pack can often be requested, with a model of a stoma and some sample bags for your child to see and explore. Sometimes knowing what to expect can make something feel a little less frightening. Let them know that whatever they are feeling is okay and that they don’t have to deal with it alone.

How can I prepare my child to start school with a stoma?

This is something you may need to think about when deciding which school to apply for.

I visited schools and asked if they had experience supporting children with stomas. I asked what the accessible toilets were like, and I wanted to see them for myself. You will need to be your child’s greatest advocate. And sometimes that means asking the same question three times, making another phone call, or politely refusing to take “that’s just how we do it” as an answer. Your child’s school can help inform you about what provision may need to be put in place. Be prepared for this not to be fixed overnight. 

Will my child be able to participate in sports and hobbies with a stoma?

Absolutely! Once recovery has passed and they have been given the go-ahead by their medical team, there is no reason a child cannot participate in sports and hobbies. Waistbands and high-waisted support underwear can be worn under uniform to provide a barrier and some extra security.

Making sure your child is comfortable and knows what to expect can help enormously. Have a conversation with their teacher and, depending on their age, invite your child to be part of that discussion too. Their comfort and security should be paramount.

How can I encourage my child to be more independent with their stoma?

Every child will be ready to take steps towards independence at a different time. There is no set age, and it is really important not to put pressure on them. This could start with laying everything out ready for a bag change, helping to get the bag off, helping with wiping, or simply being involved in choosing what they need. Little steps can eventually become big ones.

Reward charts and incentives could be added to the routine too, but keep them fun rather than making your child feel pressured. The aim isn’t to rush them into independence. It is to help them feel confident when they are ready for it. Make sure to look after yourself too. Watching your child navigate the world with something you may have never even heard of before can feel incredibly isolating.

I know for me, being in baby classes and on the school playground, I have always struggled to relate to some of the things being talked about. When so much of your life revolves around appointments, bags, leaks, supplies and making sure your child is okay, it can be difficult to remember that you are a person too. It is important to remember that the stoma is not all your child is.

Please don’t forget to look after your own wellbeing too. 

Talk to someone, find other parents who understand and ask for help when you need it. And please know that it is okay to grieve the life you thought your child’s life would look like. Some children adapt quickly. Others take much longer. Some may seem completely comfortable with it one year and then struggle as they get older. There may be days when they are angry about it, don’t want to talk about it or simply want to feel like every other child.

If your child is really struggling emotionally, don’t feel that you have failed them. Sometimes children need more support than a parent can provide on their own. Speak to their medical team if you are worried about how they are coping. There may be difficult days and difficult stages. But there can also be school plays, sleepovers, sports, holidays, friendships, laughter and all the ordinary moments that make up childhood.

A stoma may be part of your child’s story, but it doesn’t have to write the whole story for them.

Rach
@gutsy.mum