Crohn's disease: an important milestone

450 steps later.

This is a photograph of me and my partner, Chloe, atop the dome at Florence Cathedral. A very very cool place which can only be accessed by climbing 450 stone steps; there is no lift. On the same day we also climbed to the top of the bell-tower: another 450-step ascent. This experience was pretty special to me for all sorts of reasons, not least because it represents an extremely important milestone in a journey I started around a year ago.

This time last year I was diagnosed with Crohn's disease. It's a lifelong autoimmune condition with no cure (yet), and it basically means my immune system thinks my gut is an invasion, and wants to destroy it.

Lots of unpleasant symptoms arise from this. Some are fairly obvious, such as horrible stomach pains and funny bowel movements. I also had to closely monitor my diet and cut out inflammatory things like beer and chocolate. Other symptoms I wasn't expecting, and the one I've struggled with the most over the past year has been chronic fatigue.

Until recently it was a serious task just staying awake for a whole day. I'd take frequent long naps during the day, and even light exercise like a 20-minute walk would render me out-of-breath. My resting heart rate was 80-120bpm, and those 20-minute walks would sometimes take me up to 140-150bpm. In addition, the inflammation in my bowel made it harder for me to absorb nutritional value from food; I lost 15kg in weight over the course of 6 months and was deficient in a bunch of things, including iron and vitamin D. My brain stopped working properly, and I would frequently forget things or just not have the mental or physical capacity to deal with them. Naturally my mental health also suffered as a result of all this too, further exacerbating the problems.

I was determined to continue doing the stuff I love, and I had a hugely successful year despite the challenges. But it was very hard. 2022 was simultaneously the best and worst year of my life so far.

After my diagnosis, the NHS kicked into action and prescribed me a series of different medications. The goal is to put my disease into remission and keep it there, and there are lots of treatments of varying strengths that will do that. I tried a few different tablet-based medications last year, which either didn't work or had unacceptable side-effects. In November, a doctor concluded that my disease was severe enough to put me on the hard stuff.

On 9th January I went in for my first dose of Infliximab: a medication which is infused directly into the bloodstream over the course of a couple of hours. On the morning of the 10th, I sprang out of bed feeling like a man made new. My brain kicked itself into action again and I started having creative thoughts for the first time in months. I could walk to work and back without breaking a sweat. And I can eat and drink basically whatever I like.

I've since had 2 more doses of Infliximab, and will need topping up every 8 weeks for the rest of my life. But it's a small price to pay to be able to have essentially a normal life.

The primary purpose of this post is to express gratitude. First to the NHS, which despite its problems has sorted me out at zero cost. Had I lived in the US, I'd be thousands of dollars down and uncertain as to how long my insurer would continue to pay for my meds. We are deeply lucky to have universal free healthcare in the UK and we should protect it fiercely. I'm also grateful for medical science; had I been born 100 years ago I would have no hope of treatment. It's thanks to smart people working together to solve these problems that I'm able to have my life back.

Finally, I'm grateful to the people around me who have supported me, and who have often taken my burdens on their own shoulders. There has been a lot of slack to pick up over the last 12 months in all aspects of my life, and I'll never forget the support I've had from so many people.

In particular, Chloe, who has been and continues to be my rock. Frankly, my life would have totally fallen apart without her.

I'm always extremely wary of over-sharing. But this felt like a story worth telling, because I could have avoided a lot of this mess had I gone to see a doctor sooner. After many years of Googling funny symptoms and assuming I had IBS or acid reflux, it was a push from Chloe which finally made me go and see my GP. The moral of the story is that people - particularly men - should be encouraged to engage much more openly with their health. An astonishing proportion of under-35s haven't seen their GP since childhood, and frankly it's dangerous. If you feel funny, ask a professional; don't just Google your symptoms.

So why the cathedral picture? Well, 3 months ago that climb would have damn-near killed me. I wouldn't have even attempted it. But thanks to my treatment and the support of my family and friends, I was healthy enough to fully enjoy a wonderful week away with my partner, and experience some truly amazing things. I'm feeling extremely lucky.

If you want to learn more about Crohn's disease, the Crohn's and Colitis UK charity has some great resources.