You've been diagnosed with Crohn's disease. Maybe after months of stomach pain, blood in your stool, or feeling exhausted all the time. A colonoscopy is done to find out what's going on, and once you've slept off the sedation, you're sitting across from a specialist. They tell you that your immune system is attacking your own gut wall, a so-called autoimmune disease. It's chronic, incurable, and food has no effect on your symptoms. A week later you can come back to discuss which medication you'll be given.
That moment probably doesn't feel like an answer, but like a sentence. Because the symptoms are still there, only now you've been given a label that stamps itself on you and your life. From living a normal life with symptoms, you're suddenly incurably ill, and you'll have to make do with that for the rest of your life.
I know how it feels to sit in that chair, because in 2015 I sat in it exactly like that. The opening of this article is my own experience. But what if Crohn's isn't incurable, but misunderstood?
What Crohn's disease actually is
Crohn's disease and ulcerative colitis are together called IBD: inflammatory bowel disease. Whether you're diagnosed with one or the other mainly depends on where the inflammation sits in your digestive tract and how deeply the gut wall is inflamed.
With ulcerative colitis, the inflammation is continuous and sits in the large intestine. With Crohn's, the inflammation can appear in different places along the digestive tract, from the mouth right through to the rectum, and the gut wall is inflamed more deeply. In practice, we see that with Crohn's the inflammation often sits at the junction between the small and large intestine. This part of the gut is called the ileum.
What both diseases have in common is a chronic inflammation in the digestive tract. The immune system is constantly active and causes an inflammatory reaction. The two most important questions are: what is it reacting to? And why doesn't that reaction stop?
The answer you're given is that your immune system turns against your own body. That it makes a mistake and therefore 'attacks' your gut wall. That's also why immune-suppressing medication is prescribed. If you assume the immune system attacks your own body by mistake, you have no choice but to suppress it so the attack stops.
But what if it's something else? What if your immune system isn't attacking your own gut wall? What if it's doing its very best to protect your body? What if it's causing inflammation against something that's being overlooked? Then you're suppressing a system that's doing everything it can to protect you. Your immune system isn't the culprit; its reaction is simply misunderstood.
What's going on beneath the surface
Millions of bacteria live in your large intestine, and together they form your microbiome. When that microbiome is in balance, those bacteria keep your gut wall healthy, produce short-chain fatty acids as fuel for your gut cells, help to keep the make-up of the microbiome in balance, and regulate part of your immune system, which makes you less prone to inflammation. But when that balance is disrupted, things change.
In many people with Crohn's, researchers see that the microbiome is less diverse. There are fewer protective bacteria, and there's more often an overgrowth of unwanted micro-organisms. This can be a bacterial overgrowth, a fungus such as Candida, or a parasite. When these pathogens are present in your gut, your immune system has to defend your gut wall and your body against these intruders around the clock. Over time it can become overburdened, so the immune system is forced to switch to a back-up system in which it responds with inflammation. As long as the trigger stays in your gut, the inflammatory reaction keeps going. That explains the 'chronic' nature of the inflammation that leads to this diagnosis.
The gut wall forms a barrier between the contents of your gut and the rest of your body. On your gut wall, a thin layer of mucus is produced that we call the mucosa. This forms a safe zone between your body and everything that lives and moves inside your gut. When that barrier becomes damaged, bacteria, food proteins, and other substances can enter your body. And just like in the earlier example, the immune system, once overburdened, responds with inflammation.
These are two examples out of many factors that can play a part in disrupted digestion and lasting inflammation. The immune system isn't reacting 'wrongly'; it's reacting to something that shouldn't be there.
With a stool test, we can map out the make-up of the microbiome and whether there's a bacterial overgrowth, fungus, or parasite. In our practice, we find a clear trigger here in people with Crohn's and ulcerative colitis.
Why lifestyle matters more than you're told
One of the most striking findings from research is that Crohn's and ulcerative colitis have risen sharply since 1953, exactly in the period when antibiotics became widely available. The diseases are more common in countries where a lot of antibiotics are used and where the diet consists mainly of grains, dairy, and sugars. That's no coincidence.
Antibiotics can change the make-up of your microbiome dramatically. They're prescribed for all sorts of complaints. While they're effective against complaints caused by bacteria, they have a downside too. Broad antibiotics don't only kill the unwanted bacteria; they also disrupt the make-up of the microbiome, and with it what it does for your body. Research shows that people with Crohn's and ulcerative colitis were often prescribed antibiotics in the two to five years before their diagnosis.
And then there's sleep. Many people with IBD have trouble sleeping, and researchers suspect that disrupted sleep isn't only a result of the disease, but also a factor that makes the inflammation worse. During the deep stages of sleep, your immune system recovers and the mucus layer of your large intestine is maintained. If your sleep rhythm is disrupted, your body doesn't get enough time to do that repair work.
Incurable, or misunderstood?
This is where it gets interesting. There's a genetic component to Crohn's: the NOD2 gene. Mutations in this gene raise the risk of developing Crohn's. With this mutation, more macrophages (these are certain cells of your immune system) are sent to the ileum.
Now suppose the make-up of your microbiome in the large intestine has been disrupted, or you have a sugar-rich diet that draws the bacteria from the large intestine up into the small intestine. When that happens, the bacteria end up first in the ileum, where they don't belong. The immune system reacts to these intruders, and over time a chronic inflammation can develop. Exactly in the place where the inflammation is found in many people with Crohn's disease.
Our diet contains a lot of products that hold sugar or are rich in starch, such as bread, rolls, and potatoes. This means the bacteria are fed constantly and stay present in the small intestine. As a result, the bacteria keep being drawn to the small intestine, the immune system stays active, and so there's a lasting or chronic inflammation. If the immune system is suppressed with medication, that does stop the inflammation, but it doesn't solve the problem.
Now let's take it a step further. When the make-up of the microbiome is right, it produces butyrate from the fibre in fruit and vegetables, but only if you eat enough of them. If you don't eat enough fruit and vegetables, or when the make-up is disrupted by a one-sided diet, stress, or a course of antibiotics, the microbiome can make less butyrate. Research shows that butyrate has a positive effect on the NOD2 gene, which means it has a genuinely positive effect on the immune activity, and so on inflammation in the ileum, the place where most people have an active inflammation.
These are just a few examples that show the label 'chronic and incurable' doesn't tell the whole story. Crohn's disease is often misunderstood, with the assumption that the immune system is the culprit, while it's actually doing its very best to protect your body, in a situation where many different factors together lead to the chronic inflammation.
What this means for you
I know from my own experience how it feels to be told you're ill and that nothing can be done about it. In 2015 I was diagnosed with Crohn's myself, after a colonoscopy that found a chronic inflammation at the junction between my small and large intestine. The specialist said that food had no effect on my symptoms, and that I should come back a week later to discuss which medication I would be given.
I never made that follow-up appointment.
Not because I knew better, but because I felt this couldn't be the whole story. My body became my own experiment. I had nothing to lose; if it didn't work, I could always still take the doctor's route. I started searching, reading, and trying things for myself.
Step by step I looked into what food did to my body. Certain things went out, others came in to replace them. Before long I noticed more calm in my belly, and the pain eased. I also stopped working irregular shifts, because I noticed that the night shifts in particular were draining for my health and my recovery. That let me go to bed around the same time every night and sleep a good eight hours, and I noticed how much my body benefited from that regularity.
In 2017 I spent a full year completely free of symptoms, from a disease my specialist had called chronic and incurable. Without ever having used medication. That's ten years ago now.
This is also the reason I do what I do. Because there are so many people whose lives are badly affected by this disease. For one person that means racing to the toilet ten to twenty times a day, with never more than a minute's warning. Others have no energy at all and can only do a little in a day. Someone else is in a lot of pain or is constantly run down with colds. What matters most is that you can live the way you want, without being held back by a body that no longer works.
That's also why we do what we do. The inflammation in Crohn's is shaped by an interplay of factors: your food, your lifestyle, how your immune system works, possible food intolerances and a disrupted microbiome. For each of these, scientific research has shown a link with gut inflammation. By mapping them and addressing the disruptions in a targeted way, you can help reduce the inflammation and work towards living symptom-free in the long term.
With this article I've wanted to give you insight into the factors at play in Crohn's disease, and why the label 'incurable' doesn't tell the whole story once you understand what's really going on.
In my book 'First Aid for Your Gut', I explain step by step how your digestion works, what role your gut bacteria play, and what happens when that system is disrupted. Our specialists know exactly which factors play a part and which tests can be used to make your personal situation clear.
Curious what we can do to help you become symptom-free again? Book a free, thirty-minute intro call. No obligation, just an honest conversation about your situation and what we can do for you.
It's time to see Crohn's not as incurable, but as misunderstood. And what's misunderstood, you can change by gaining new insight.