It has been the hardest fight of my life. Living with a stoma. There has been so much to deal with on so many levels; acceptance, self loathing, pain, unstable mental health and pushing people away who I love. That doesn’t include the countless times I have been covered in my faeces. It has taken me three years to be able to openly speak about what happened to me properly. Now I reflect, it saddens me how I have been and how I have acted.
A stoma is where they take out a part of your bowel that is infected and they reattach one end to your stomach to divert the flow of faeces or urine. It is now estimated that one in 335 people in the UK are currently living with a stoma. I was diagnosed with diverticular disease in my 30’s and controlled it but on April 30th 2019 my bowel exploded and I was rushed into emergency surgery. I wrote this blog ‘I Am Not Who I Used to Be’ in 2019 reflecting on that life-changing experience.
But this year has been a breakthrough for me. I decided that to move forward I needed to be self-aware and I also wanted to raise awareness around the stigma of the stoma. With that in mind, I did a lot of reading, and my journey started with a theatre piece.
A play with Middle Child Theatre, an amazing theatre production company from Hull called “There Should Be Unicorns”. The play takes inspiration from my life; it is about a young girl (Jasmine) that believes in unicorns and superheroes. She is from a working class background and her dad (me) teaches hip-hop in a bus (based on my work as Founder of the Beats Bus). Jasmine has problems at school and gets beat down because of her dad and dreams but it has a happy ending and Jasmine changes the minds of the bullies. Within the script Luke Barnes, (the scriptwriter) and I wrote about my experience of having a stoma and the effects of the operation. There is a scene where dad (me) has to open up to his daughter Jasmine (played by Emily Gray) as to why he’s struggling, because she is struggling too. Here are the lyrics I wrote for this piece.
“Dear daughter
I never felt like this before
Everything I once told you has changed once more
One day I was fit next day I’m on a drip
24 hours body shut down quick
Confusion, pain, anger and fear
The fight for survival brought the darkness so near
Drug induced state brought altered reality’s
The face in the shadows their trying to grab at me
Ice cold fingers dragging me to the unknown
Angel top my right fighting them alone
Hand of god in the surgeon saving my soul
7 hours later 37 staples to hold
My torso together lower chest to pelvis
Doc told me not to cough if I could help it
Trust me the first time I felt it
Out of the dark into the light was my exit
Thoughts of family woke me with a warm tear
Next thing nana saying I’m glad to here
Outlook on life is different when death tells you it’s over
Physically a changed man dad’s got a stoma”
My next step was tweeting Colostomy UK. They picked up on the awareness I was trying to raise through the play and got in touch. I was still very nervous about speaking about things but they said they wanted to write a piece about me. In turn, this made me research the work that the charity does and after speaking to Giovanni, the founder of Colostomy UK rugby team, he told me about the Step up for Stoma 39 challenge. The significance of the number 39 is because every 39 minutes in the UK someone has stoma surgery. I found this statistic comforting in a strange way that made me feel less alone (not that I would wish it on anyone). I also found out that Colostomy UK has a rugby team. This is amazing and led me to go rugby training for the first time in 27 years, man did i hurt! I am playing my first game in 27 years on October the 16th in Newcastle, man that is going to hurt too.
So this was my breakthrough. I am testing myself to do both of these and for my Step up for Stoma 39 challenge I am doing 39 miles on the bike at the gym over September and October. I have completed 18 so far and have raised £120 for the charity. I have vlogged my progress and posted it on my twitter so that everyone knows I am doing the challenge not sat at home on my butt. But more importantly to raise awareness, and show that it is possible to exercise with a Stoma and hopefully encourage others to do it too.
The play was brilliantly received and started lots of conversation about my condition. The response has been really supportive and positive things have happened from me opening up about my stoma and this made me realise it could help to speak about it. I’m not going to lie, it has been hard talking about everything that happened and reliving it everytime we performed the play but at the same time it has strengthened my resilience and made me feel that I can help others. I want to be able to speak freely and openly about my experience in the hope that it will help with the loneliness people with a Stoma might feel sometimes as I know I felt it a lot.
My name is Steve a.k.a Redeyefeenix and I have a stoma.
Step Up for Stoma 39 Challenge Fundraiser
About the Author
Steve is the founder of the Beats Bus Records a record label that has a mobile recording studio for outreach work discovering young talent and used to teach Hip-Hop to communities in and around Yorkshire and the Humber that are more deprived than others and struggle to access the Arts, giving young people hope and aspirations whilst teaching them the values and elements of Hip-Hop alongside some learning and development and confidence building classes. Beats Bus Records is now an award winning community organisation that teaches the elements, values and true history of hip-hop to date they have won eight Awards for their community work the latest being “Music Tutoring Business 2021” from Yorkshire prestige awards.
Steve is part of the Sounddelivery Media Spokesperson Network.