Inflammatory bowel disease (IBD): incurable, or misunderstood?

After months of stomach pain, unpredictable bowel movements, blood loss, or exhaustion that never seems to end, you finally have a name for your symptoms: Crohn's disease or ulcerative colitis, which together fall under IBD.

But instead of giving you clarity and answers, it often feels like a sentence: chronic, incurable, and something you'll have to live with for the rest of your life.

I know how that feels, because in 2015 I sat in that exact chair and was told I had Crohn's disease. That diagnosis, choosing my own path, and being free of symptoms within six months without medication, became the start of a journey that grew into First Aid for Your Gut.

This is more than a belief. It's what we live for: the label 'chronic and incurable' doesn't tell the whole story. IBD is so often misunderstood.

On this page I explain what IBD actually is, what the difference is between Crohn's and colitis, and why recovery is possible once you understand what's really going on.

What is IBD?

IBD stands for inflammatory bowel disease. It's an umbrella term for conditions in which there's a chronic inflammation in the digestive tract. The two best-known forms are Crohn's disease and ulcerative colitis. Ulcerative colitis comes in different forms, depending on how far the inflammation reaches: from proctitis (only the rectum) to pancolitis (the whole large intestine). There are also other forms of chronic gut inflammation, such as microscopic colitis (with its subtypes collagenous colitis and lymphocytic colitis) and indeterminate colitis, when it isn't yet clear whether it's Crohn's or colitis.

With these diagnoses, the immune system is constantly active and causes an inflammatory reaction in the digestive tract. From this, the conclusion is drawn that the inflammation is chronic, that the immune system is attacking your own body, and that all you can do is take medication to suppress it, followed, if you're unlucky, by an operation to remove part of the gut once it's too badly damaged.

The question you're never given an answer to is this: what is the immune system reacting to, and why doesn't that reaction stop on its own?

The difference between Crohn's and colitis

Whether you're diagnosed with Crohn's or ulcerative colitis mainly depends on where the inflammation sits and how deeply the gut wall is inflamed.

With ulcerative colitis, the inflammation is continuous and sits in the large intestine. With Crohn's disease, 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 than with ulcerative colitis. In practice, with Crohn's the inflammation often sits at the junction between the small and large intestine, in the part we call the ileum.

So the difference comes down to the place, the depth, and whether the inflammation is continuous or active in several places.

That leaves one question: which underlying factors and mechanisms cause the inflammation and keep it going? That's exactly what we'll unravel below.

Why IBD is so often misunderstood

The answer you usually get is that your immune system turns against your own body. That it makes a mistake and attacks your own gut wall, a so-called autoimmune disease. That's also why immune-suppressing medication is prescribed: if the immune system is the culprit, you 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, but doing its very best to protect your body against something that's being overlooked? Then you're suppressing a system that's doing everything it can to protect you, without taking away the cause. That's also why the inflammation comes back as soon as you stop the medication: the cause, the trigger of the inflammation, is still there.

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 the make-up of those bacteria is in balance, they keep your gut wall healthy. They also make short-chain fatty acids such as butyrate, by fermenting the fibre in fruit and vegetables. Butyrate is hugely important, because it keeps your microbiome balanced in both type and number, and it even has a regulating effect on part of your immune system.

In many people with Crohn's and colitis, researchers see that the microbiome is out of balance: there are fewer protective bacteria, and more often an overgrowth of unwanted pathogens, such as a bacterial overgrowth, a fungus, or a parasite. These pathogens are a danger to your body, so your immune system is busy keeping them under control around the clock. Over time, and under certain conditions, it can become overburdened and switch to a back-up system. At that point it can only protect your body by responding with inflammation.

Can you see now where the symptoms can come from? As long as the cause, the trigger, is still in your gut, your immune system keeps doing its best to keep your body safe, and so the inflammation carries on. That explains its chronic nature.

Want to understand more deeply how your microbiome drives all this? You can read about it in the article on your microbiome.

What this means for you

I know from my own experience how it feels to be told you're chronically ill, that nothing can be done about it, and that all you can do is take medication to keep the symptoms under control. In 2015 I was diagnosed with Crohn's. By changing my diet and lifestyle, I was free of symptoms within six months, without ever using medication. Not because I knew better, but because I felt this couldn't be the whole story.

That's why we do what we do. The inflammation in IBD 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.

It's time to see IBD not as incurable, but as misunderstood. And what's misunderstood, you can change by gaining new insight.

Read more about your diagnosis

In these articles you can read, for each diagnosis, how the symptoms develop, which factors play a part, and why recovery is possible.