Do you remember that moment? When it really sank in and you truly knew what it meant for your future, now that you had IBS?
For me, that moment was a very, very long time after diagnosis. Almost 20 years after in fact. That may surprise you, but there are reasons why it took so long.
When I was diagnosed over 25 years ago, very little was known about IBS and how to treat it. Because of that, it wasn’t explained to patients in the same way as it is today. And back then, I couldn’t learn from other people via the internet about what having IBS meant.
IBS was here to stay
Instead, I was essentially told that I had a ‘nervous tummy,’ caused because I couldn’t control my thoughts. But that if I stopped being such a worrier, it would all get better. While that explanation did nothing to fix the problem, it left me believing that I would only have a problem for so long as I created it. That if I could control the worrying, my tummy problems would go away.
So in my early days, it never crossed my mind that IBS was here to stay. And no doctor ever told me that either. They said that I could stop it by controlling my emotional state.
But after years of work on my worrying, and having things getting worse, not better, it slowly sank in that I couldn’t actually stop the IBS. But that still wasn’t my moment.
Diet and mental health
It was around that time though, that researchers finally started to understand more about IBS, especially how foods affected it. This was the time when they were starting to piece together the initial concept of the low FODMAP diet. I remember attending a lecture by Professor Peter Gibson, who was talking about his team’s latest research findings. That’s when I first heard the word ‘FODMAP,’ long before it became a standard term in the IBS community.
At that time, I had no idea of the impact that FODMAPs would have on my life. Still, it was this lecture that made me understand that IBS wasn’t completely under my mental control. Luckily, at the time, I was also under the care of a doctor who knew there was more to tummy problems than mental state. Together, these two things helped me to discover my first food intolerance.
After removing some offending foods, things were good for a while. But that was temporary. And they got much worse before I found the relief I have today. When I reached my worst point, fructose malabsorption was by then a standard thing for ‘in the know’ Melbourne doctors to check for. But I told the doctor that I’d rather proceed with full FODMAP testing, which started me on the path to relief.
So then when was my moment? Not until I was half-way through the low FODMAP diet. By then, I’d dived deep into the research and finally knew that IBS wasn’t going anywhere. But knowing IBS was here to stay was only the first step.
My moment of realisation occurred when I understood that I was never going to be able to eat normally again. That my belly was so sensitive that I would have to be vigilant all the time, because it wasn’t only food that did this to me. That moment was deep and dark, full of helplessness and hopelessness, knowing I was stuck with this for another 50 years.
They say you need to hit rock bottom before you can truly heal. For me, what gave me strength was knowing that I’d finally got the answer I’d been seeking for most of my life. And that my symptoms weren’t all my fault. So as hard as that moment was, I found the light at the end of the tunnel, which has helped me to be hopeful about my future.