For most of us with chronic illnesses, a big part of the journey is receiving a diagnosis. It’s that recognition that there really is something wrong and we are not just making up our symptoms.
But receiving the wrong diagnosis can be just as frustrating as not having a diagnosis at all. It can affect the type of treatment we receive. It can also affect how people respond to us, or even how we view ourselves.
Pain, Fatigue and Fear: My First Flare-Up
In February of 2016, at 21 years old, I was hospitalized for a week with my first inflammatory bowel disease (IBD) flare-up. I was malnourished, fatigued, in excruciating pain, and could barely hold my bowels for more than five minutes.
A team of gastroenterologists (GIs) monitored my health and did the standard procedures, such as an endoscopy, colonoscopy and stool samples to see what was wrong. I started to hear the terms ulcerative colitis (UC), Crohn’s disease (CD) and C. Diff. for the first time. I remember waking up from my first colonoscopy and hearing the words, “Your colon shows signs of Crohn’s disease” from the GI doctor, and statements from loved ones like, “I really hope it’s not Crohn’s disease.”
I was scared. I felt as if these terms were being thrown around like a death sentence.
So many thoughts were racing through my head. What does this all mean? How is this going to affect my future? Is this my fault?
My endoscopy showed signs of gastritis and my colonoscopy showed signs of pancolitis and inflammation in my terminal ileum. Usually, having inflammation throughout the GI tract is a sign of Crohn’s disease, but my doctors said it was still not conclusive. They ordered an IBD panel, and it came back saying I had ulcerative colitis, so from February 2016 to June 2017, that was my diagnosis: ulcerative colitis.
What Chronically-Ill People Don’t Want to Hear
During my first flare-up, I missed about a month of work and about two weeks of school. I was a junior in college, getting my undergrad degree in communicative disorders. It was definitely one of my toughest semesters. I also worked as a group fitness instructor, and my absence was definitely noticed since I worked with large groups of people.
It took a lot for me to open up about what was going on. I stayed connected with a lot of my gym members and college classmates through social media, so when I finally had a diagnosis, I decided to open up online about what had been going on with my health.
I was very surprised by some of the comments, like:
“Oh, I am so glad you have ulcerative colitis and not Crohn’s disease.”
“If I had to choose between ulcerative colitis or Crohn’s disease, I would definitely choose ulcerative colitis.”
I recognize that these comments were supposed to be comforting in some way.
But at the time, when someone compared the two illnesses, it bothered me. I took it as: All the pain and suffering I had just endured was not comparable to someone who had Crohn’s disease… that I would be “okay” because I had ulcerative colitis.
I felt like people didn’t take me seriously or understand the seriousness of both diseases.
It was exhausting trying to explain the difference between UC and CD, so by 2017, I just told people I had IBD. I really was not convinced I had UC anyway.
Connecting with Other Warriors
I realized that when people compared the two illnesses, their intention was in the right place, and it was an awkward conversation for most people who don’t have IBD. They didn’t really know what to say.
For that reason alone, I needed to surround myself with people who would understand. I learned to cope with all that ignorance by finding a community of people with UC and CD through Instagram.
On Instagram, we refer to ourselves as Warriors. We are UC and CD Warriors. I wanted their advice, experiences, and perspectives. I wanted to know how they dealt with ignorance.
The Trouble with Misdiagnosis
From January 2017 to June 2017, I had a flare-up throughout my GI tract. On June 8, I had an endoscopy and a colonoscopy. The scopes showed inflammation in my esophagus, gastritis, and signs of active disease in my ileum and colon. By the end of June, I was hospitalized.
A team of GIs revisited my health records. I was taking HUMIRA at the time, but unfortunately, my body was building antibodies towards the medication.
I remember lying in my hospital bed when one of the GIs on call came to my room. After a discussion with several of his colleagues, he said my results and symptoms were more consistent with Crohn’s disease.
The doctors also wanted to change my treatment. They wanted to try a biologic called Stelara.
UC and CD are very similar; however, they have slight differences, and it is important to get the right diagnosis. Here’s a perfect example of why:
Even though my doctor had prescribed Stelara, it took about four months to get it approved by my insurance company because Stelara was only approved for people with Crohn’s disease.
Sure, the doctors finally agreed that I had CD. But most of my medical reports at the time said UC. So it was a challenge to prove to my insurance company that I actually had CD.
Being My Own Advocate
Being my own advocate was what helped me get through my misdiagnosis. I did a lot of research on the differences between UC and CD. I also talked with a variety of people living with the conditions.
It turns out I wasn’t the only person who had to deal with this kind of misdiagnosis. In a recent survey of people with inflammatory bowel disease, 1 in 10 Crohn’s patients stated they had been misdiagnosed with ulcerative colitis.
Now, more than two and a half years since my first IBD diagnosis, I realize I’m going to deal with a lot of ignorance. As Warriors, we have to be mentally strong to deal with the ignorance—and the physical warfare our bodies are under, and also the emotional toll IBD takes on us.
Something that has really helped me was finding a community. It helped to surround myself with people who empower me and who understand what I’m going through. That is a huge piece to coping with this illness. We are stronger when we deal with this together.
Oshi is a tracking tool and content resource. It does not render medical advice or services, and it is not intended to diagnose, treat, cure, or prevent any disease. You should always review this information with your healthcare professionals.