this talk: is about the highs and lows of living with a stoma - with Billie Anderson
Hello, I’m Billie. I’m 23 and I poo into a bag! Three years ago I was diagnosed with Ulcerative Colitis; a chronic autoimmune condition that affects the large intestine. In a matter of weeks I went from a healthy 20 year old, to five stone and unable to walk. But not only was my physical health in decline, so was my mental stability.
At 20 years old I was supposed to be living my best life. Instead I was surviving between my bedroom, bathroom and a hospital ward. I crawled through 11 months of treatment and tests, only to be told my colon had to come out. Five months away from finishing my degree, I pleaded with my doctor to let me finish my studies. He simply said, “you won’t make it that long if we don’t do this now”. So aged 21, I had 5 feet of large intestine removed and a stoma formed. To put that into perspective, I’m 5ft 2in - so that’s a lot of intestine. I’ve been living without a colon and a bag on my stomach for two years now. Not only did the operation save my physical health, but my mental health too.
Throughout the whole process, mental health wasn’t discussed. During my colon days I went through moments of deep depression. I would spend months on my own, staring at the four walls of my flat. Three days a week I would make the mammoth trek to hospital for another test or appointment. Leaving the safety of my flat consumed me with anxiety. I spent hours before I stepped over the threshold plotting the best route and ensuring there was a toilet at every turn.
Even though I didn’t talk about it, the pain was most definitely written all over my face. I didn’t recognise myself when I looked in the mirror anymore. When my hair fell out, my face puffed and my joints froze, I was told, “be patient.” I would sit on the floor of my shower watching the clumps of hair flow down the drain; the water from the shower mixing with my tears. And still no one bothered to ask how I was feeling. So I would hide it and started to believe my own lies. I told people I was feeling better and felt like things were going in the right direction. Behind closed doors, I knew I was lying to myself. I absorbed the feeling of despair as I traced my 5 stone frame. Each finger scaling the gaps in my spine, following the bend of each rib and feeling the joint where my pelvis met my leg.
When my colon was removed that pain and anxiety was still there. Sure they ‘fixed’ the physical problem (by removing it) but my brain was still all over the place. I went through a lot of ups and downs in the early days after surgery, but for the first time in a year I genuinely started to feel better - for real this time. I started to walk unassisted again, my hair grew back and the joint pain subsided. I didn’t need to rush to the toilet anymore and was getting a full nights sleep. I started to fill in between the bones and put on two stone in a month. With my life-sapping colon gone, I felt my personality coming back.
They say your gut is like a second brain and there was a clear link between my mental health and physical health. I still have a lot to process and have looked into counselling, but removing my colon gave me more than just a bag for life. It helped me to see the importance of my mental stability when going through a physical illness.
A final piece of advice: Find people who have been through it and talk!
I reached for social media in the hope of finding someone who truly understood what I was going through and found a huge community at my fingertips. We are always told not to talk to strangers on the internet, but without the kindness of strangers I wouldn’t be where I am now. The community I found on social media gave me strength and the guts (haha) to open up. I’ve had my bag for two years now and I still reach out to the community for advice or just a chat when I’m feeling down. Without them, I wouldn’t be where I am now.
You can find Billie on:
Instagram