hand trying to push in a puzzle piece that does not fit

My Very Strange Misdiagnosis Story

Crohn's disease is not always easy to diagnosis. This was particularly the case thirty years ago when I was first told I had the condition.

Early signs of pain, vomiting, and constantly sick

At the time I had lots of stomach pain. Many nights of vomiting. My parents kept insisting it was the flu. IBD wasn't very common then. Still, I doubted what they were telling me. After all, I didn't have a fever and was vomiting every few days. Also, I got sick on way too regular a basis for it to be the flu.

Eventually, one night, on a trip to Florida, when my family was staying with my grandparents, I got deathly ill. All night I kept puking up bile. There was nothing left inside of me. Terrible abdominal pain. Sweats. Feeling faint. I needed to go to the hospital.

I was first misdiagnosed with appendicitis

In the morning, my parents brought me to one in West Palm Beach. I was told I had appendicitis. They operated. Insisted it was necessary or I could die.

When I woke up the doctor said, “you don't have appendicitis, you have Crohn's disease.” I was so weirded out. What was Crohn's disease? It was a very rare condition back then. The name sounded strange. Was I in a science fiction movie?

When the surgeon opened me up he saw very bad inflammation in my gastrointestinal tract. My intestines were red and swollen and almost looked like they were on fire. It was clear to him I had Crohn's disease.

My first Crohn's diagnosis was questioned by a new doctor

I returned to New York where a gastroenterologist questioned my initial diagnosis. I seemed to feel fine, at the time, which he said meant I didn’t have Crohn’s disease. He said, “you’re fine. Don't worry about it.” I couldn't believe it. My problem was solved! Hallelujah! He did say, though, if I started to feel sick again, to come back immediately.

The next year was great. Very limited symptoms. I thought it went away. Then I started throwing up again. The stomach pain was awful. Frequent trips to the bathroom. Puking up bile.

The long process of getting a Crohn's diagnosis

I went back to the gastroenterologist in New York who conducted further tests, confirming I had Crohn's disease. I was started on medicine right away...at that point, just Asacol. But further drugs were added over the years.

Basically, then, in a way, I was misdiagnosed twice. First when they thought I had appendicitis and next when my New York gastroenterologist told me I didn’t have Crohn’s disease.

What I learned from the whole experience is that getting a diagnosis is a process. Eventually, the truth will be revealed. But you need patience.

Although it may be an ordeal to get your diagnosis, it is worth it in the end. For, once you get it, you really are one step closer to getting your life back. This is because you need to know what you have in order for doctors to treat you effectively.

It’s never thrilling learning you have Crohn’s disease, but it beats the alternative: fumbling around in the dark without a clue. Thanks for reading, and, as always, feel free to comment below.

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