IBD Stories: Sam Gray
by: Sam Gray
Starting from the beginning, or a little bit before the beginning…Like a lot of people in their 20s and 30s, I wasn’t paying that much attention to my health. I had a relatively high stress job in London, but I loved it, I’d got married and we had busy social lives, making the most of living in an amazing city. On the reverse side of this, I was having regular stomach cramps after almost every meal, prolonged uncomfortable nights in the bathroom, sleepless nights that impacted on my mental health.
I was ignoring it, the symptoms were embarrassing and, because I knew I hadn’t been paying close enough attention to my health, I was blaming myself. Surely there was a dietary reason I was feeling like this and frankly, I didn’t want to hear the bad news if there was something wrong. I wasn’t dealing with it and it was getting worse, it felt like my body was punishing me and I was torturing myself psychologically with blame and guilt.
While the world was locking down during the first wave of COVID-19, our house had different priorities, my wife was pregnant with our daughter who was born in May. During lockdown, which was pretty strict in the UK, I had been using my bike on Zwift to ride indoors and clear my head, which worked quite well. It actually started to get me to fall back in love with cycling, something I’d been afraid to do on the roads in London since I moved there.
Soon though, maybe it was the stresses of lockdown parenting, but my symptoms started to get worse. I had pain in my stomach and my back, I couldn’t sleep and I couldn’t pick up my little girl. All the while my wife was telling me to get help, ring a doctor or go to hospital. But I’d been telling myself it was my fault for too long so now I believed it, I didn’t think doctors could help me. That week, lockdown was starting to ease and my parents came to meet their granddaughter. I was able to see them for under half an hour and had to go back to bed, in too much pain. I hadn’t eaten for over a week and wasn’t sleeping more than an hour at a time, I was getting hot and cold shivers like I had a fever. In the middle of the night, I finally gave up and rang 111, the non-emergency health service number in the UK. It takes some time to speak to a doctor, but finally they said I should either go to A&E now, or get the first appointment in the morning. I took the second option. The doctor saw me first thing, ran some tests, gave me lots of worried looks and spoke very carefully to me. it turns out she was very worried I was going to pass out on her floor, my heart rate was through the roof. I was admitted into A&E anyway.
Routine tests, some non routine tests, CT scans, prostate exams (my first one, not as bad as you think!) X-Rays and lots of blood tests later, they worked out I was dehydrated and had a perforation (a hole) in my small bowel, caused by repeated inflammation due to Crohn’s disease. The perforation had caused an infection, which had turned into sepsis, I was very close to dying, although I didn’t know that until I checked out of hospital.
At this point I weighed 49kg, I’m 6 foot 2 so this is severely underweight, I’ve always been skinny so never paid attention to it, but now I can see that I was very ill. I didn’t weigh enough for surgery to be a safe option for me, so the doctors had to treat the perforation and Crohn’s medically. This meant antibiotics to fight the infection and a liquid-only diet to let my small bowel heal. I was really scared. I was away from my wife and little girl, no visitors allowed due to COVID, no food allowed and no real idea of what having Crohn’s disease meant. I knew for some people it was surgery and stoma bags, but for some people it wasn’t. For some people it was steroids and for some people it wasn’t. I just didn’t have any information. Thanks to some resources given to me in the hospital and some googling, I started to build a picture of what my future might look like. That’s when I first read about Cory, a professional cyclist riding and thriving with Colitis. I was too old to become a pro cyclist (amongst other reasons…) but if he could survive the harshness of the pro-peloton with this disease, I could get healthy for my little girl. I made a commitment to myself to get healthy, to find a positive way through this diagnosis and to never keep silent again.
I stayed on a liquid diet for two months after being hospital, so it took me a long time to build my strength back up. But I was putting on weight and doing well. I was put on a treatment for Crohn’s disease which was a mix of medications, which started to keep my symptoms under control. Finally I felt strong enough to try a light Zwift session. Cycling indoors at home was kind of perfect as it was safe, close to a bathroom (just in case!) and a great way of seeing just how I was feeling. I’d ordered a new bike, something bright and bold from Ribble, now named Rhubarbara, and I was determined to get fit to do the new bike justice. Zwifting more and more I took part in a Crohns & Colitis foundation Zwift event led by Cory. Suddenly I wasn’t alone, after feeling so lonely and isolated by my symptoms, I hadn’t just met a bunch of people with the same illness as me but the same passion for cycling too. When my bike arrived, I started to use instagram to share my journey and hopefully spread some knowledge about Crohn’s and Colitis too, the more people that have the information the less scary this disease might be for someone in the future.
I’ve been really lucky to have people supporting me and the online communities that exist for people with Crohn’s and Colitis have been invaluable. Getting information out there is the key to stopping people like me being too afraid to learn what, deep down, I knew was true. Since I’ve started sharing my journey with Crohn’s and cycling, I’ve had countless people messaging me sharing their own stories, either people I know who didn’t feel brave enough to share with me or strangers who were looking for someone going through something similar. Crohn’s and Colitis affects 7 million people globally and you almost certainly know someone living with it, it’s only by talking about it that I finally got the help I needed.
A year after I was in hospital, at probably my lowest ebb, I’m now fitter and healthier than I’ve ever been. Riding most days, my treatment is going well and on 10th July, I’ll be riding 100 miles raising money for Crohn’s and Colitis UK.
Oh, and I can pick my little girl up just fine.
Sam Gray (32) is from The United Kingdom and was diagnosed with Crohn’s Disease at 31.