5 or more ways my stoma has positively changed my life

5 or more ways my stoma has positively changed my life

Gratitude

I use this word an awful lot in everything I do, but think it is always most important. When life gets difficult and hardships present themselves, I always focus on gratitude. There is always someone worse off, struggling more. If I can help others even in a time of darkness, then hopefully it will help them and I find the focus helps pull me out of it more. You can spend a lifetime asking why me? Why did this have to happen? But you will never find the answer. It can eat you up inside.

Creating a stronger bond with my son

I started my little corner of the gram with an account to connect with parents and carers of children with a stoma/Hirschsprung’s disease. At the time I had a j-pouch, and it wasn’t for another 4 years that I would have to have my second stoma surgery done, as life with a j-pouch really wasn’t the best option for me. My little man has always been the light of my life. They say you shouldn’t be best friends with your children, but rather a teacher and a protector and nurturing. I have always said there is no reason why you can’t be both. He is honestly my best mate, and I have balanced both sides of the coin and wouldn’t have it any other way. When I was given the go ahead for my surgery I was relieved as I wasn’t living, more surviving. I couldn’t run around and play with my son the way I wanted to, and I felt guilt ridden for it. Following the 6 week recovery surgery I felt like a different mum. Our stomas are a very small part of who we are, but I look to my son with such great pride with how he lives with it and doesn’t let it stop him. There is not a day that goes by that I wish we didn’t have this genetic disorder which caused it and that I passed it on to him, but I know through the mutual medical intervention and struggles we have endured, together we are better people for it and we will always have an incredibly strong bond.

Being active

Being active has always been important to me. When you have the ability to do so taken away it can negatively affect your mental health, even more than your physical health. For me it has always been a way of taking time just for me. A time to process the day, difficult times, and find that release. I became the fittest I have ever been after stoma surgery, and if you had told me that prior to surgery I would have never believed you! There is a lot of active ostomates who share content on what they do and it can be incredibly motivating, but should not be taken as a necessity. Some people may find walking is the maximum they can do, while others can have such extensive times of poor mobility that even long walks is too much. I always remind myself that whatever was 100% my best on the day, whether it was more or less than the day before, is more than good enough. Work within your means and be proud you are trying.

Opportunities with Respond/Pelican

Being asked to be an ambassador feels like a lifetime ago. When I speak to or see someone from the teams it’s a warm hug and the feeling of meeting an old friend. They have been there since my journey as a parent to an ostomate, always so full of support and championing the patient voice. When it came to having my own ostomy and being asked to share my personal story is when I became fully immersed into seeing what happens behind the scenes to get our medical supplies from the factory floors to our homes. It is truly staggering the man hours and effort made, you would think it is all automated but that simply isn’t true. Having factory visits with my boy was eye opening, and we had no idea what went into it but left feeling very grateful indeed. I have been across the UK to different events and met some wonderful people who I am now proud to call true friends, connecting through adversity in the most positive and beautiful way. My biggest highlight is being half of the presenting team for the podcast Beyond The Pouch with Lou (@crohnsfighting). Getting to meet so many people from all walks of life that I never would have had the chance to before is an honour, and the episodes double up as therapy sessions and a chance for me and Lou to have a good old catch up having known her from the start!