Thinking back, I can see how much I’ve altered my life since my diagnosis. I’ve learnt the things I can control and how I accommodate things that I can’t control.
Mac
Living with Colitis
I was 31 years old and nine years into my career in the RAF Regiment when I was diagnosed with Colitis. Before this, I was blissfully ignorant of its existence and being in the RAF Regiment was everything to me.
Then, the illness effectively put an end to any grand aspirations of promotion or life-long service. I was compromised and no longer eligible for the posts and jobs I wanted. Up to that point, the cornerstone of my fitness was running, and my main hobby was mountaineering. All of a sudden, just a few minutes of either would cause nightmarish toilet trips into the undergrowth. Often, these trips were followed by raging paranoia and shame.
I couldn’t exercise or socialise, I couldn’t do the work I wanted to, and I was facing medical discharge. This would have left me jobless as a new father whilst my wife, pregnant with our second child, was recovering from a stroke - Talk about stressful!
Enter a bunch of medication and the best discovery I ever made: weight training.
I had never been a fan of weights because I was always taught that running and circuit training was all I needed. The need to find a new kind of physical training led me to picking up a barbell and I haven’t looked back since.
I’m not saying that lifting weights helped improve my Colitis one bit but where there is a gym, there is usually a toilet. This gave me more privacy than a bush or a roadside drain with ringside seats.
The action of squatting, deadlifting, and pressing progressively heavier loads didn’t have the same knock-on effect on my bowels as running or circuit training.
I had a new lease of life.
I enjoyed it so much that I knew that I wanted to be a coach when I left the RAF Regiment. My quality of life steadily improved as I added muscle and increased my strength. My confidence also increased and my constant companions, knee and back pain, slowly melted away.
I became a civilian again in 2015 as a newly qualified Personal Trainer and Sports Massage Therapist with no clients. It still felt like Colitis was ruling my life at this point. Long journeys were always an anxiety-ridden mess. They required meticulous planning of potential toilet stops, bags of spare clothes, extra medication, so I avoided travel whenever I could.
It also affected me at work. After a year or so of building up my client list and running classes, I would still have to suddenly stop coaching. I’d have to urgently run to the loo, often sweating more than the people I was training.
Eventually, an opportunity presented itself and I was able to rent a small commercial unit close to my front door and turn it into a gym. I installed an extra ‘executive’ toilet and shower for my own use whilst keeping the original as the public loo. That was a real stress reliever, knowing that in the worst circumstances I could have privacy and get myself clean without creating a scene.
In the ten years since my diagnosis things got steadily worse and I was referred for biologic treatment.
In the ten years following my diagnosis things got steadily worse and I was referred for biologic treatment but now, eighteen months and a couple of colonoscopies later, the disease seems to have retreated considerably. My gut seems to be healing but there’s still disease in my distal colon and my symptoms are still very much alive and kicking. But the good news is that there finally seems to be a relatively predictable tempo to how I’m affected.
Early mornings are the worst time for symptoms, so I plan my day accordingly. I know that if I get up at 6am and start moving, I can be done by around 9am so I don’t make plans to leave the house before then. I also adapted my business to include online coaching which I’m generally able to complete between trips to the loo before I head to the gym.
Although once I leave the house I’m usually good for the rest of the day, my paranoia remains. I stay close to the loo with a fresh change of clothes at all times and I’ve been grateful for that on several occasions.
I also talk about it. Loads.
I tell new in-person clients that I may have to unexpectedly stop things and use the toilet. Not one single person has ever complained or decided that I wasn’t the coach for them (well, not for that reason anyway!).
Talking with my members is incredibly therapeutic. I’m always blown away by the depth of peoples understanding, especially when they’re given some knowledge about what you’re going through. Some may even be going through something similar but haven’t yet found the voice to express themselves.
The more I talk about it, the more people I meet who either know what it is, know someone who does, or have it themselves. It’s helped me shrug off that shame I used to feel and make connections with people who now feel able to confide their own insecurities too. I hope that by sharing my experiences, I can encourage my clients to do the same.
My ideal work environment didn’t exist, so I built it.
I don’t think I’ve had a single gym member who isn’t dealing with something. Just maybe there might be some measure of solace in being strong together.
I can’t control my Colitis and that’s ok. That doesn’t me it gets to rule how I live my life 100%. I can control when I sleep, I can control when and where I work and I can control who I work with.
