Five years ago on the 6 January 2017, I was diagnosed with Ulcerative Colitis and four years ago on the 2 January 2018, I had my colon removed. Every year these dates are two huge milestones in my life. Not only did they transform who I am, but they’ve taught me a lot.
Here’s a snippet of what I’ve learnt and what I plan on taking into 2022 (don’t worry, you won’t find New Year, New Me here):
People are stupid.
Yep. That’s right, I said it – people are stupid. If I got a penny for every diet fad, yoga-toting-kale-pushing-keto-enthusiast telling me they could CURE my INCURABLE condition or that IBD was *clearly* down to diet, I wouldn’t be living in a one bed flat in SW London, that’s for sure.
Although under the care of an expert medical team, someone’s cousins cat twice removed cured their (incurable) UC by injecting celery juice into their eye, (do not try this. I am joking) meditating and eating flax seeds. Regardless of the doctors working overtime to stop the bleeding from my bum, people would tell me “ITS BIG PHARMA PAYING DOCTORS TO PUSH MEDICATION. YOU DON’T NEED THAT, YOU NEED TURMERIC” (I work in healthcare and pharma legit cannot pay doctors to do that). Even though I had actually tried every medication under the sun, people with a medical degree from the same place as Piers Morgan, would tell me I’d had a terrible diet and it was the reason for my condition (spoiler alert: It’s not)… And (my absolute favourite) the Keto diet was going to (and I quote) grow my colon back.
This is not only hilarious, but also dangerous. The thing about UC or any chronic illness for that matter, is it is all individual. Everyone experiences illness differently and it is down to each person with the disease to work out what is best for them. Some diet changes may help some with IBD but for me, kale and yoga were not the answer (the cocktail of very strong medication wasn’t either as I write this pooing into a bag on my stomach).
So I will continue to stress that exercise, juice diets and going vegan will not cure my incurable disease or grow my colon back. Please stop telling me it will.
I am the expert of my own body.
Similarly to the above, I know my own body and I am fully aware of what’s right and what isn’t. For example fresh tomatoes, a fully vegan or vegetarian diet will cause havoc on my digestive system.
This goes against every ‘health eating’ article you will see this January but I am devoted to carbs. Carbs are my friend. Bread, pasta, anything with everything that Gwyneth Paltrow tells you not to eat is perfect for me. I know that high intensity exercise puts me at risk of a hernia, I know I need an extra teaspoon of salt than the average person and drinking too much water can contribute to dehydration.
I have been living with IBD and a stoma longer than some doctors have been studying. This doesn’t put down their experience but I am a firm believer chronic illness patients can teach even the longest serving medical professionals a thing or two about their experience with their condition. Which in itself, is a big incentive to bring patients, doctors, nurses, GPs and charities together to improve care worldwide.
Sometimes it’s hard.
Ostomy life isn’t easy. It comes with the fact I am literally pooing out of my stomach and handle my intestines on a daily basis. It’s weird and wonderful. It can be uncomfortable and emotional.
Sometimes I push myself too hard and forget I am not invincible (you’d think the diagnosis would’ve been clue enough). None of us are.
I forget that living with a stoma is huge and every now and again it’s right to reflect to remember how f*cking awesome our bodies are.
Community is everything.
On the day of my diagnosis, I wasn’t in tears when my doctor told me I had UC. It didn’t mean a whole lot to me. I knew nothing about it or what the diagnosis would mean for the rest of my life. So I went searching and found a worldwide community at my fingertips.
Everyday I see the confidence and power from coming together as a community within the IBD, stoma and female space. I get to connect and speak to people across the globe and find some real friends (virtual and real) for life just through sharing our experiences. The IBD community got me through the 11 months of treatment. The stoma community helped me survive surgery. The community of powerful women and small businesses promoting positive sex is what helped me to expand my horizons and be more open about my experiences.
Community, no matter what the topic, is everything.
All in all, there’s a lot you can learn from your experiences and that doesn’t have to be the removal of a large organ! Day five into 2022 and I can see “New Year, New Me” popping up in amongst endless articles on diets and exercise fads. But what about “new year, probably the same me but very happy with that”. This year I am striving to find the things I love everyday and revel in them, desperate to sit on a beach for a week, wanting to develop beautiful recipes and delightful dinners; determined to see my friends and family more and hell-bent on looking 💁🏼♀️ everyday.
I will not rise to the pressures of society to change when I think things are pretty good as they are (just with more cheese and wine this year).