Balancing parenting with a stoma

Having a stoma affects many aspects of daily life. In the early days, I found I was on edge and in fight mode waiting for a leak as I navigated finding the right bag for me, finding a bag change routine, and establishing a diet of foods that I could tolerate post surgery. With all the hardships that it comes with, it has enabled me to have children which I never take for granted. But how do you juggle parenting and having a chronic illness? With two children with the same condition and a stoma as well as myself, I have had to learn quickly how to juggle it all. It doesn’t come without its struggles, but as with all things parenting, they make it worth it everyday. 

Good support network – It goes without saying that it really does take a village to bring up a family. Surround yourself with good people. This may not necessarily be family, but the family you choose. You may find that people you thought you could count on aren’t there as much after you have children, and lives become very busy. Value the people that are there, and remember that not everyone is in your life for the long hall. Many will come and go, sometimes just for a season. Live in the present as best you can, and find joy in the little things. Children are chaotic at the best of times. Have people around you that stay for the chaos and the best times. Practice self care when you can, even if it’s grabbing a drive through coffee, or listening to a podcast in the car.

Keep hydrated – Such an important thing to keep on top of and very simple to action, yet most of us are guilty of not prioritising this. Life is incredibly busy with children. I know I can go all morning having just had a coffee, and wonder why I have a headache by lunch time. There is always something that needs doing, and someone else to put first. We all know however, that getting dehydrated is the start of a slippery slope, and I have to keep reminding myself that I need to stop what I am doing and just drink!

Preparation is key – If someone is helping with childcare, ensure you have everything accessible and where others can access it. For me, I need to make sure new stoma bags are cut and ready if the children need a bag change, and supplies are easily accessible. A visual step by step guide was created so I can give people visual support to follow should they wish, as being shown often isn’t enough when leaks are rare. I also have step by step videos to watch as a refresher. 

Leading by example – When you have a leak or a bad day with your illness, the default for a lot of parents is to hide it, and act like everything is ok thinking you are protecting your child. Research shows this isn’t the best approach. Being vulnerable in front of your children, and showing them how you overcome difficulty is a teachable moment. Don’t shy away from the bad and ugly of stoma life. Be open and show them how you battle on, age appropriately of course. 

Appointments – Keeping on top of appointments is a logistical nightmare for an adult, let alone when you have little humans to do it for. If it doesn’t go in my phone with an alert the day before, it isn’t happening. Whatever system you choose whether it is reminders on your phone, Alexa, a diary, post it, keep it up and have a back up. There is nothing worse than missing an important appointment you have been waiting for. 

School – Letting school know that you have a chronic illness is important. Your child might see you be sick, have questions, overhear discussions about treatments, and this could be brought up in school. Having a good rapport with the classroom teacher or another trusted person in school allows you to keep them updated on things at home. This enables your child to be nurtured and given more support if needed. They may have thoughts and feelings that come to mind when they are away from home, which they choose to divulge to a trusted adult at school. Letting them know for example if you have been in hospital, or have a difficult time ahead, can allow school to keep an extra eye on them.

Gratitude – Above all else, having gratitude is what has got me through the hardest of times. Listening to podcasts of others stories and in particular doing my own ‘Beyond The Pouch’ with Pelican, where I can be reminded that we are all on our own path. What is meant for us will not pass us by, and we will get through anything.

Rach x