My Diagnosis

I am going to share the story of my diagnosis.  I will explain how I was diagnosed with Crohn’s disease, my emotions, and how I feel looking back.

I hope this anecdotal post shows you that your experiences are valid. And that sharing my story can help you manage your own diagnosis and disease. And maybe make you feel less alone in your diagnosis process.

I was diagnosed with Crohn’s disease in November 2016. I still remember that day clearly. The relief I felt, finally having an answer to why I felt so sick all of the time. And the overwhelm I felt with the endless unknowns that came with this new diagnosis.

In this post we will cover

• The tests that were done
• How I felt during the diagnosis
• How long it took for me to be diagnosed

 

The process of being diagnosed with any disease can be overwhelming. It is scary, expensive, and time-consuming. It can wreak emotional havoc on your life.

My diagnosis was stressful; I was so unwell, and in near-constant pain. I had secondary symptoms, which are what ultimately led to my diagnosis of IBD.

IBS Diagnosis

 

When I was at University, I had a lot of digestive issues. I would go through periods of feeling unwell, and periods of feeling completely fine. I experienced:

• Blood in my stools
• Rapid weight loss
• Loss of appetite/food aversion
• Constant diarrhea
• Urgency after eating

 

After a few weeks of rapidly losing weight, I knew that I had to go and see a doctor. I visited my GP in my hometown. At the time I was pooping blood, had constant diarrhea, and was underweight.

I remember the doctor looking at my bum hole, and telling me my diagnosis was internal hemorrhoids. The bleeding was caused by hemorrhoids, and I was to take a cream that would heal it.

I know now that this was not the case. But coincidentally I took the cream and my bleeding did stop. But my other symptoms persisted.

After a few more months, suffering the same symptoms.  I went to see a different doctor at my university. She told me that I had all the symptoms of Irritable Bowel Syndrome. She explained to me that IBS is a sensitivity to some foods. And I that the cure was for me to avoid all foods that upset my stomach.

I told her all food upset my stomach. I told her that sometimes I had to run to the toilet after drinking water.  She looked at me in disbelief, I could tell that she did not believe me.

She brushed me off, repeating again that I had IBS.

I spent the next few days researching and learning about IBS.

I believed that I had IBS for the next six years.

 

Reactionary Arthritis

 

In 2016 I was diagnosed with IBD because my ankles had swollen up so much that I was unable to walk. I was bedridden and in so much pain.

Leading up to this issue with my ankles, my ‘IBS’ had been acting up, severely. I had all the familiar symptoms: weight loss, loss of appetite, and generally feeling unwell.

I visited a doctor for my ankles.  He was unsure but thought I had broken both of them. I was confused, wouldn’t I remember breaking both of my ankles??

I had an x-ray that confirmed my suspicions: my ankles were not broken.

Next up was a blood test. The blood test results came back with high levels of inflammation in my body.

The doctor asked how I was diagnosed with IBS. 

“I was told that I had all the symptoms.  And that I should avoid all foods that hurt my stomach.”

“No colonoscopy, no stool sample?”  he replied.  No nothing.  I had not been given any tests for my IBS diagnosis.

He told me that IBS is a diagnosis given when all other diseases have been ruled out.  My previous doctor was wrong in diagnosing me with IBS so quickly, without doing any other tests.

 

He then ordered a stool sample.  Which came back 5 days later with elevated inflammatory markers in my GI tract.

 

Next, I was sent to a gastroenterologist.

 

The Gastroenterologist

 

 

I met with the gastroenterologist who ordered me a colonoscopy straight away.

I still remember that first time having to drink the laxative prep for the colonoscopy. It was so horrible. The taste, the texture, and the sheer quantity that I had to drink.

I was living in Japan at the time.  And I had to travel over an hour by train to the International hospital for my colonoscopy. I had to get off the train several times so that I could run to the toilet from the prep. It was horrible.

During the colonoscopy, I was awake, but given local anesthesia. I lay there in awe as I watched the live footage of the inside of my body. I had to move around a few times so that the doctor could move the camera more easily inside me.

He took a biopsy that felt like a slight pinch, then pull. No pain, just a bit weird. I was free to go immediately after the procedure.

After receiving the results from the biopsy, the doctor told me that I did not has IBS. My swollen ankles were something called reactionary arthritis. Which is joint pain and swelling triggered by an infection or inflammation in another area of the body.

My diagnosis was Inflammatory Bowel Disease.  Specifically Crohn’s disease. I had never heard of that disease before.

I remember that I was in a daze at the news of this new diagnosis. It did not sound good. 

I only absorbed half of what the doctor told me.  But I understood a few things.

I was told that Crohn’s disease is an autoimmune condition. The body attacks itself inside the colon. Crohn’s disease is incurable, and I would be on medication for the rest of my life. I would probably need surgery at some point.

He said all of this with such certainty: it was an unchangeable fact.  My life path was set for me.

I was completely overwhelmed and lost.

 

I told him that Ron and I were planning to buy a boat, and sail from Europe to Australia. He looked at me blankly, and told me that that was a bad idea.

He said that if I wanted to go anywhere, I should move back to Canada. In Canada I should get in touch with a gastroenterologist. I should find a team of doctors who would provide me with lifelong care.

I was literally crushed. I did not feel like I was a sick person.

I felt the walls of the office closing in around me. I knew from that moment on, that my life would be different.

Desperate for a better situation for myself, I asked the doctor what I could do to help manage this disease. He told me that there was nothing I could do. Just take the medications, and listen to the doctor’s advice.

I specifically remember him saying to me. “Eat your ice cream, eat your cheeseburger, it doesn’t matter what you eat. IBD is not affected by diet.”

What bad advice.

 

My Emotional Response

 

When I left the doctor’s office I was in a daze. I don’t even remember paying for my appointment. The next memory I have, is sitting in a small café outside the hospital. I had an egg salad sandwich in one hand, and my phone in the other. I Googled Crohn’s disease.

Words like incurable, life-long medications, and surgery kept coming up. I studied the headlines, and read the first three articles about Crohn’s disease.  I read a few times that diet did not have an impact on the disease.

I felt so down. My dreams of traveling and sailing the world with Ron seemed impossible now. How would I get the medications that I needed? How would I stay in touch with a doctor? I desperately did not want to be tied down to one place.  I wanted to be free to travel and live my life as I pleased.

I did not want my life to revolve around doctor visits, blood tests, and bad news. I did not want my body to be filled with medicinal chemicals.

I did not want Crohn’s disease to ruin my life.

 

Time Line

 

It took six years for my diagnosis.  From the first time I ever saw a doctor for my gastro issues in university.  To the time I was diagnosed in Japan.

From the time I had reactionary arthritis, to my diagnosis was about 3 months.

I know that a lot of people with IBD struggle to get a diagnosis. There are so many health issues that share similar symptoms to IBD.  Such as:

• Upset stomach
• Changes in weight
• Abdominal pain
• Diarrhea
• Food intolerances

 

Looking back now the my diagnosis process seemed fast. I know some people are first tested. Then diagnosed, or misdiagnosed, ghosted, and gas lit by their doctors for years.

Remember that your symptoms are valid. And you are the best person to analyze your body.

And please recognize that everything that I doctor says to you, is not necessarily 100% true.  I did manage to spend the next three years sailing from Europe to Australia with Ron.  And it was one of the best decisions I have ever made.

I know that my diagnosis went relatively smooth.

I was right in assuming that the Crohn’s disease diagnosis would change my life forever. But the changes that have occurred are not exactly as I expected.

Yes, I have suffered.  Yes, I have felt unwell.

But I know now that there are ways in which I am better off with Crohn’s disease. And that I can be thankful for this disease and all that it has taught me.

Don’t get me wrong, suffering as a mechanism of learning, is extremely difficult.

But I know now that I am healthier, and more spiritually connected than I would have been without it.

But it took me a long time to get here.