How My Crohn's Journey Began

Everyone has their own journey when it comes to getting their IBD diagnosis. Everyone's journey to that discovery is different even though there are hundreds of thousands of us with the same disease. Here’s mine...

I was a healthy, athletic kid

I’ll start by saying that no one in my family has, or ever had, IBD. I’m the first. Not something I wanted to be the "first" at. Growing up in Canada I was probably healthier than most and rarely got sick. So, it was a bit of a surprise to be diagnosed with an incurable chronic disease.

I was very active growing up running, climbing, soccer, and being a competitive figure skater. I ate normally, had no allergies, no broken bones, drank from the hose, and got my hands dirty. Normal.

My life changed around the age of 13 when my dad left. Just like that, no clue as to why, just left. He left us each a letter and once I read it, I threw it out. I don't remember today what it said, but I remember that it made me angry and it changed me. I went from being the nice kid to being the angry kid. It affected my skating and I ended up leaving the sport in 1985 after attending our Provincial Winter Games.

When Crohn's symptoms crept in

It is at this point in my life, I personally think, that maybe Crohn's started. Not necessarily any symptoms showing, but the anger, anxiety, stress, and keeping everything in contributed to the Crohn's "gene" being triggered. It may not be the reason because there is no known cause, but for me, I think it was a contributing factor.

It was January 1988, after returning from England for my Nan’s funeral, symptoms started suddenly and even though it was more than 30 years ago, I remember it like yesterday.

I was laying on the couch one morning and I was drinking a cup of tea. It started with all I can describe as what felt like a gas bubble in my throat. I kept drinking the tea thinking it would go away, but instead it felt as though the "bubble" was moving down into my gut and it was there when the pains started.

Deteroriating before diagnosis

The pain grew, diarrhea started, and I started to slow my eating habits as I associated pain with eating. The muscle I gained through years of soccer and skating started to disappear within a few months as the weight dropped because there was no more fat left on my body. I was a healthy athletic weight of 170 lbs (77 kg/12 stone).

No one could figure out what was going on. The first few doctors thought maybe I caught something while overseas but all stool samples came back negative. Blood work showed high inflammation and blood loss (through diarrhea) but still, no one could figure out what was going on.

I was never a very outgoing person, never the life of the party but it is at this point I believe I became an introvert. I canceled plans, didn’t see friends anymore, came up with every excuse in the book.

Horrific pain and no answers

I didn’t want anyone to see me. The fetal position was now common for me. Laying on my bed, curled up, waiting for the "pain train" as I called it, to pass. I could feel the horrible pain coming like an oncoming train, it would peak and then fade away like the train had passed on to its destination.

One doctor suggested it was in my head and another thought I had anorexia. It was the 6th doctor that finally figured it out based on all the testing I had done. It was around 5-6 months after that first "gas bubble" and cup of tea. Crohn’s disease.

A Crohn's diagnosis, but few answers

The conversation with the doctor at that visit tore me down even further. I asked, (and I remember this sequence of events very, very clearly), "Okay, so how do we get rid of it?"

"You can't," he said, "You are going to have this the rest of your life. There is no cure."

"There must be something we can do?" my mum asked.

"Other than medications and surgery, there's nothing else I can do," my doctor answered. I remember the look on my mum’s face. Both she and I were scared.

Very little research on Crohn's

I had never heard of Crohn's before and neither had anyone else I talked to. This was before the internet and social media so I hit the library and even there, not much to go on. The only thing to do was to try the medications at the time and for me, it was high-dose prednisone and Salofalk (5-ASA).

At this point, I was very skinny and a shadow of my former self. I felt isolated, embarrassed, and alone, no one would understand. I thought I would be alone forever. And I was only 20 years old.