For the majority, the thought of having a stoma is a negative thought. To be fair, pooing into a bag on the side of your tummy isn’t going to initiate much excitement or feelings of winning the lottery! There are on the other hand, some of us that had such a poor quality of life before having stoma surgery, that it is welcomed and wished for. In both situations there will be positives and negatives to be found. Acceptance of the new normal, grieving for the body you had, and navigating your relationships as a changed person are some of the big hurdles to climb.
What is important however, is to find the positives and give them the acknowledgment they deserve. Here are the things that I have gained from stoma life that wouldn’t have been possible:
Being active
When I say being active, I don’t mean running half marathons every week. One a year is enough, thank you! I mean being able to walk without being in pain. Holding down a job and not having to call in sick all the time. Being able to lift the shopping bags from your weekly food shop without bracing yourself for pain and suffering after. Being able to do the washing and ironing in the household without aids or other people helping you out to do it. We see being active as just exercise, but when you simply couldn’t do household chores and needed to rely on the help of others, to have that changed it amazing.
Being able to help others
Being present on social media as @gutsy.mum on Instagram, I get several messages a week from people across the world who either have children with a stoma, or have one themselves. A lot of the questions around the unknowns and anxieties around having a stoma can be difficult to talk about with people in your day to day life. It can be easily overcome with the barrier of a screen, to be open, raw and honest. These individuals ask me questions, advice, or seek reassurance which I love being able to provide. I will never understand the reason for me and my children having Hirschsprungs Disease which caused the stoma surgeries, but being able to give back in this way helps accept it a little bit more.
Make new connections
Social media, like many of us, is where we turn to connect with fellow ostomates, and people who may have been through similar experiences. I started my little corner of Instagram to do just this, and shed a light on what it means to be a parent of an ostomate and an ostomate myself. I have created core memories with some of these wonderful beings, of whom some I am lucky enough to call genuine friends. The irony is, when in their company I hardly even talk about my stoma. Remember you are so much more than that, even if it is the reason why you connect with new people.
Being a present parent
I was a new mum when the debilitating pain started, which led me to needing stoma surgery from having my original stoma reversed at the age of two. As the baby started walking and being very active, I found mum guilt became louder and louder everyday, and I couldn’t be the mum I always wanted to be. I would get on with it with gritted teeth as that’s what you do for your children. Despite this, I struggled at being present and living in the moment with him, as the pain would be constant and strong pain medication would bring side effects which made me very tired and forgetful. The need for medication, and living in such pain, left when I had my surgery. It was literally life changing, and now with my second child, I can be just as present as my stoma still gives me the best quality of life I didn’t think was possible.
There are lots of other things that make my life better, and sharing them and taking the time to think about them definitely makes me feel happy and grateful in the moment. When you have a dark day, and struggle to see the sunshine through the clouds, try doing the same to gain perspective. There will always be some dark days and struggles, but that is the same whatever cards you are dealt with in life. Take the time to sit down and recognise the good when you can.
