Alex was diagnosed with Ulcerative Colitis at 19, an autoimmune disease. He now lives healthily and happily with a J Pouch [?] in Amsterdam with his partner and his new puppy, Coco.
In 2023, Alex launched Someone Who Knows to help more patients learn from one another.
Below he tells us about some of the things he learned on his way from diagnosis and through 3 operations. This story may contain triggers for some people.
I remember I was at my girlfriend's house at the time, and – graphic descriptions ahead – I had to go for a poo at what for me was a weird time of the day, like 5pm or something. I then noticed it was an odd colour, sort of orange, but didn't think much about it. Then basically over the next few weeks I was having to go more and more often each day, and started seeing noticeable amounts of blood each time I did. It was a bit off and on though, some days I'd be more or less fine. My GP figured I had a virus and unfortunately it took a while to get referred to hospital and correctly diagnosed.
By that time I was really struggling – the way I tend to describe it when people ask, is to think of the worst stomach bug you've ever had but then extend its duration to several weeks, maybe even months.
I didn't really know what to think nor to ask – I was probably too overwhelmed to come up with any considered questions, so at 19 all I wondered was, what's the fast-track back to health? I guess I was hoping to be told it was going to go away with treatment – which, somewhat devastatingly, it wasn't.
Disbelief mainly (the classic "this only happens to other people" mindset), optimistic it might go away despite being told it wouldn't, and scared of having to wear a colostomy bag [A device that fixes to the outside of the stomach. Poop then drains into it directly from the small intestine, bypassing the large intestine]. Although later I would come to terms with the idea and indeed a bag ended up saving me – I hated the prospect at the time and it seemed extremely unfair that this was likely my future.
The funny thing is it wasn't the bowel removal, which horrified me when I first heard about it. The decision, although massive, was quite easy in the end, I'd been trying to fight on and live as normally as possible, but I was getting soundly beaten and my life was nowhere near what it should have been at that time. I just wanted it back and I felt like this operation would give me that. Which it more or less did. I think sometimes letting go can be the best thing – at least in this case I believe it was.
However, with the benefit of all this hindsight, I'd say the toughest part was feeling like I had to manage the effect on other people. I had a supportive family and partner at the time, but I still felt extremely isolated and alone, and that it was important no-one else had to suffer the effects of my illness. Which seems ridiculous in retrospect.
One of the most valuable things I've learned is that you can't “fight” an illness like Inflammatory Bowel Disease. Your body can fight a virus, which is a foreign invader, but the way I look at my IBD is that it's my body itself that has a problem. It's upset and it needs something to change in order to recover. You definitely need resilience, but I've tried to let go of the idea of "fighting" my IBD, because that feels like fighting my own body.
Once I accepted this, it changed my whole approach to managing this condition. The really hard part is knowing what needs to change, but the research and conversations around IBD are beginning to point to certain things that might be factors. I know people who have brought their IBD into remission, mainly through their own research and trial and error. They've made changes in their lifestyles, diets, therapeutic treatments and so on, usually in combination. That's really inspiring.
Another thing is that I was offered counselling by the NHS when I had my first operation, and I turned it down because I felt like I was ok. I wouldn't realise until much later that I was not ok mentally speaking. I was in survival mode and very disassociated, and that had a massive effect on my choices for years after in relationships, my career, social events and so on. I'd say to others that it's well worth stopping to ask yourself if you really are ok, or if you're just surviving.
Of course as founder of a peer support community I'm biased, but for me it's been transformative. I'm not very motivated to learn through reading, so it's through conversations with others that I've learned the most. A great example – Seb Tucknott of IBD Relief is a good friend of mine and has an extraordinary amount of knowledge on the subject. We've talked for hours about different things we've each tried and I've met other people through him who I've drawn ideas from as well. I look at my illness in a completely different way because of all these people, and I feel a lot more positive about my future with it.
For me it was a long time before I met anyone else who had my condition, but when I did it was at once educational and hugely reassuring. Not everyone has access to others that share their experience, and that's what we're changing with Someone Who Knows.
IBD Relief helps people live better with inflammatory bowel disease through education, patient advocacy and research, and sharing the stories of people affected by IBD.
Crohn's and Colitis UK helps people with IBD to understand their condition so that they can make informed decisions about their health. There is a telephone helpline available too.
The Crohn's & Colitis Foundation is dedicated to finding new treatments for Crohn's disease and ulcerative colitis, and improving the quality of life of children and adults affected by these diseases. Information available in English and Spanish.
Crohn & Colitis NL advocates for people with IBD in the Netherlands, helping them to find information and connect with others and advising medical professionals on their behalf. Information available in Dutch.
