Parenting tips when you have a child with a stoma | by Rachel
Parenting with a stoma, where do I start?! This is such a wide open question. It differs massively regarding their age, how long they have had a stoma for, and why. Lots of variables can change the type of care you provide. I have had two children needing a stoma within the first week of life, and it is safe to say it was learning on the job. Nothing can prepare for how it will feel, and fit into your life as you know it. But there are some things I share with parents that I think will start you in good stead.
Be prepared
I always had a stoma bag changing box downstairs, along with the nappy changing supplies. Upstairs I had my craft trolley which I turned into a portable changing kit. This was especially handy for nights with lots of wake ups, to be able to just grab and go. As ostomates, we all know the importance of having on us a change of bag, having one in the car and place of work. When growing the rate children do, there may be a need to change stoma bag size quicker than you would think. Make sure to keep your appointments with your medical team, and ask them for advice on what signs to look for. Filling up too much, or needing to empty frequently may mean you need a bigger pouch.
How do you know when they have a bag leak?
Sometimes it is unavoidable, and with children (especially babies) this is much harder to navigate if they can not communicate the itching, burning feeling that a leak can start to feel like. For babies they will show queues, much like when they have a poo when they start potty training and you would be on the lookout for their face changing, or going off into a corner of the room. With babies with stomas, some signs may include being irritable when all other physical needs are met. They may reach for near their bag, try and pull it off, itch it, and show signs of frustrations.
Managing a stoma bag change
Stoma bag changes are ever evolving as a baby starts to move more, learn to crawl and walk. They may start by lying there while you can distract them by singing and talking to them. As soon as they learn they can move more and reach things, it can become incredibly difficult. Keep a basket of small hand held toys or items of interest, and rotate them so the baby doesn’t get bored of them. If you can have a mobile above them somehow, having photos of family, or objects of interest can be a lovely distraction. This doesn’t mean it will suddenly be easy, but it can help.
Diet
As you start to wean your baby, you will learn what foods they can tolerate, and sadly for some, you may discover an allergy or an intolerance. This can contribute to high output, and watery output, which in turn can cause leaking. It can be easy to assume your stoma bag is the cause, but when you are weaning, I can’t tell you how important it is to keep a food diary, and record the stoma behaviour alongside it. My eldest was losing 4 litres of output a day from his stoma, which was caused by coeliac disease. This was undiagnosed due to having similar symptoms to Hirschsprungs Disease.
Having a routine
When you find the right stoma bag for your child, and you have a good fit with no leaks, having a routine of changing their stoma bag will help massively for your baby to expect it and it will not be a surprise. You can build in time to your day to do it without rushing. If you struggle to do it on your own, planning a time when a partner, friend, or family member can help make it much easier. For us, we just built it into the bedtime routine after bath time every night.
You have a choice
If you are struggling with getting your supplies, or with the stoma bag or accessory products you use, you do have the right to ask to change. You do not have to keep persevering with something that isn’t working for you. This isn’t good for your child or your mental health, with the stress and anxiety it can cause. Still to this day with the presence of companies in the media, not everyone knows that the bag they are sent home with, and the dispensing company for your orders can be changed. You have a choice, and you deserve the best service and products for your child. Don’t settle for less.
Finally…
That’s it for part one of support for parenting with a stoma into the mix. There are more and more resources online that can help you, and do reach out to people that make themselves available for support if you feel alone. It can feel incredibly isolating. If you feel your mental health dipping during this time, which is extremely valid and expected, please reach out for support.
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