London hadn’t hosted an Olympic Games. Uber didn’t exist. Infliximab was just as hard to get as loo roll in a COVID pandemic. That was the last time I needed treatment for Crohn’s. Now 10 years on, I’m experiencing my first flare as “a proper grown up”. Pretty tricky when you’ve fallen through the healthcare net.
I’m 35 and I’ve had Crohn’s Disease since I was 11. Which at the time, made me “interesting” to doctors. Something I’ve vowed not to be ever since and have achieved with some degree of success…
Months passed and I tried what felt like every pill imaginable (clarithromycin + rifabutin together being particularly grim). Finally I got a treatment that worked. Hello Azathioprine! The drug that saw me though secondary school and university. But in 2009, it stopped working. Even with prednisone, this cocktail of meds wasn’t strong enough. So, I was given infliximab or, as I affectionately called them “mouse drugs”.
Thankfully, it worked like a dream. A whole decade passed and I thought I’d somehow left Crohn’s behind me – along with bad haircuts and spots.
But of course, 2020 was never going to let me get away with that! So here I am, a “grown up” with my new flat, new job and a full on flare up.
So, where do you go when you haven’t had a consultation, investigation or treatment for 10 years? The answer: Nowhere quickly!
It took almost four months to see a consultant. Just as I thought I’d struck the jackpot and been approved for HUMIRA, COVID-19 hit hard. Suddenly, being on a high dose of immunosuppressants didn’t seem like such a good idea. So I stuck it out on budesonide. That was until two weeks ago when a random infection meant I was admitted to hospital. So I’m taking a calculated risk and starting HUMIRA – fulfilling a childhood dream of playing doctors by injecting myself! Wish me luck.
From my experience, a lot has changed in a decade. For a start there’s so much more support and information out there! Below are a few things I’ve learnt in the last 10 years:
* Beige food – I’d never have known that it was a “thing” without the Instagram community.
* Moonface – ahh if only the influencers and bloggers could have explained this to five stone 11-year-old me.
* Battling the system – I love the NHS. It’s phenomenal. But it’s not always easy to navigate. I’ve learnt that sometimes you have to be strong with what you need and what you want out of your care. It can make your healthcare a part time job!
* Lethargy – It’s very reassuring to get validation from others that you’re not lazy!
* Awareness – 10 years ago I wouldn’t have told colleagues or friends about my Crohn’s Disease, but now they probably know more than they’d like!
I consider myself hugely lucky. From my experience, I’m never VERY ill with Crohn’s, and I make the most of being able to eat ALL the cake and not gain weight.
I wanted to write this to encourage everyone to keep sharing because we can all learn from each other. Knowledge is most definitely power!If you’ve got to live with a disease you may as well try and understand it – so thank you to everyone who helps that cause.