My Crohn’s Story: A 21-Year Journey to Answers

My first trip to the emergency department because of my stomach happened when I was ten years old.

They found inflammation somewhere in my digestive system, although I no longer know exactly where. Then they sent me home and did nothing more.

That was the beginning of a 21-year journey towards receiving my Crohn’s diagnosis.

For years, I lived with constant pain and foods that made me ill. I was repeatedly dismissed, and what I was experiencing was treated as “just a tummy ache.”

But it was never just a tummy ache.

When food became complicated

Living with undiagnosed digestive problems affected my relationship with food in ways I did not understand at the time.

Eating frequently made me feel ill. I didn’t understand why my body reacted as strongly as it did, and I didn’t receive the support or explanations I needed.

Alongside everything else, I developed eating disorders. Although I eventually found my way out of the most destructive behaviours, my relationship with food remained strained for many years.

Food wasn’t simply nourishment or pleasure. It had become connected with pain, uncertainty, control and fear.

“You’re like a nervous horse”

My symptoms became much worse in my early twenties, but I continued to be dismissed by multiple doctors.

One GP compared my stomach with that of a horse.

He told me that when I became nervous, I was like a horse that needed to go to the toilet.

I eventually persuaded him to refer me for an upper endoscopy. The examination showed that I had stomach ulcers, but no one investigated further.

There was evidence that something was wrong, yet the search for an explanation stopped there.

“It’s all in your head”

In my late twenties, I changed doctors.

Once again, I was dismissed.

This doctor told me:

“It’s all in your head.”

And:

“It’s just a little bit of stress.”

It didn’t matter how many times I explained that this was not simply stress. I knew that something was seriously wrong with my body, but he would not listen.

It took another two years of repeatedly asking before he finally referred me for a colonoscopy.

By then, I weighed 51 kilograms at 173 centimetres tall. My stomach was constantly swollen, and eating had become incredibly difficult because almost everything made me feel ill.

It felt like living with a never-ending stomach flu.

The colonoscopy that finally gave me an answer

The day before Christmas, I underwent the most painful colonoscopy of my life.

The preparation had left me exhausted. I received no pain relief or sedation, and the examination felt as though it went on forever.

At the end, the doctor told me he was fairly certain I had Crohn’s disease.

Further assessment confirmed that he was right.

I finally had my answer.

The diagnosis came one month before I was due to defend my master’s thesis, complete ten years of university studies and embark on a journey around the world.

The trip had to be postponed.

But I finished my studies.

Relief, grief and anger

Receiving a diagnosis after 21 years was not a simple moment of relief.

I had to come to terms with the fact that I had been right all those years—and that no one had listened.

I had been repeatedly dismissed by doctors who treated me like a little girl who didn’t understand her own body or the realities of the world. After years of medical gaslighting, finally having proof of what I had been saying was both validating and heartbreaking.

Then I had to learn how to live with an illness that could affect my entire life.

That involved grief.

I grieved the body I thought I should have had, the spontaneity I had lost and all the things that had become more complicated.

It is a grieving process I have since experienced more than once. Crohn’s was not the final explanation for everything happening in my body. I was later diagnosed with scoliosis, fibromyalgia, Hypermobility Spectrum Disorder and adenomyosis. I am also believed to have endometriosis. Together, these diagnoses helped explain pain and symptoms I had experienced since childhood.

Receiving my adenomyosis diagnosis shortly before turning 50 added another piece to the puzzle. I had spent years associating almost every abdominal or digestive symptom with Crohn’s, but I began to understand that some of them might also be connected with adenomyosis and suspected endometriosis. Adenomyosis can cause abdominal bloating, fullness and pelvic pressure, while endometriosis can cause digestive symptoms such as bloating, constipation, diarrhoea, nausea and painful bowel movements. These symptoms can resemble or overlap with IBS and IBD symptoms, making it difficult to know which condition is responsible for what. In a body with multiple chronic conditions, symptoms do not always arrive in clearly labelled boxes.

Read more about my journey to an adenomyosis diagnosis here.

Again, I had known there was more to the story.

When my whole life revolved around my stomach

For a long time, Crohn’s was profoundly limiting.

My life revolved around my stomach and around having a body that dictated what I could eat and what I could do.

More and more foods disappeared from my diet. It often felt as though I had to sacrifice everything to have any chance of being “healthy.”

My energy was frequently at rock bottom.

That exhaustion affected every part of my life. I cancelled plans countless times because I did not have enough energy to leave home or knew that doing so would require days of recovery.

Over time, I began learning that changing a plan did not always mean cancelling it.

A friend could come to me instead. I could still have the connection and enjoyment I needed without spending a week recovering from the energy required to go out.

It wasn’t the original plan, but it allowed me to remain part of my own life.

I kept bulldozing my body

In the beginning, I tried to continue as before.

I pushed my body to do more because that was what I believed I should be able to do. I kept bulldozing myself, trying to force my body to meet expectations it simply did not have the capacity to meet.

That changed after the worst flare-up I had experienced. Around that period, I also received my fibromyalgia and HSD diagnoses.

Those diagnoses helped more of the pieces fall into place. I began to understand why my body reacted as it did—and why continually pushing through was not making me stronger.

I had to learn not only to speak kindly to myself, but to act kindly towards myself.

There is an important difference.

I could tell myself that I deserved rest, but if I continued forcing my body beyond its limits, the kind words changed very little. Working with my body meant allowing what I noticed to influence what I did next.

Working with my body does not mean giving up my life

I still travel, but travelling with a digestive illness has not always been easy. For years, food felt like one of the greatest risks. I could never completely trust that the food I was given was safe for me, even when I had tried to explain what I could and could not eat.

After seven weeks of camping and travelling from Uganda down to South Africa, we ate at a fancy golf resort. The meal made me so ill that it took months for my body to recover. A week later, when it was time to fly home, I could barely move. I had to be taken between the different flights in a wheelchair, and airport staff used lifts to help me onto the planes.

Experiences like that made food and travel feel frighteningly unpredictable. Becoming ill was not only about what happened in the moment. One meal could affect the rest of a trip and continue affecting my health long after I returned home.

Today, I am much more relaxed about travelling. I understand my body and know far more about what I can eat. I plan carefully, communicate my needs and make adaptations, but I no longer want fear of food to stop me from experiencing the world. I have also learned to accept that I will probably become ill at least once during most trips. That is not something I welcome, but knowing it may happen allows me to leave room for it rather than letting it ruin everything.

Travelling differently means taking breaks, choosing food carefully and not filling every day simply because I am somewhere new. It means recognising that rest is part of the trip—not time taken away from it.

I still sometimes overdo things, especially because I am driven and headstrong. But refusing to let illness take everything from me is not the same as pretending my body has no needs.

I am also learning that looking after myself does not need to be another task I perform perfectly.

A slightly adapted life is still a life

Living with Crohn’s has been an extraordinarily long and frustrating journey.

It has affected my relationship with food, my energy, my plans and how I move through the world. It has forced me to grieve and adapt repeatedly.

But it has also taught me to pay attention.

I now understand that my body was communicating with me long before anyone gave me an explanation. Receiving my diagnoses helped me replace some of the confusion and self-blame with understanding.

I cannot always choose what my body does.

But I can continue learning how to respond to it with more awareness, flexibility and kindness.

Being chronically ill bloody sucks.

But I can still live my best—slightly adapted—life.