Crohn’s Disease Diagnosis
Life with Crohn’s disease can be incredibly varied from person to person. The type and frequency of physical symptoms experienced, treatment response and emotional impacts can be different amongst all individuals with the condition. However, some aspects of life with Crohn’s may share some similarities, like the diagnostic process. There are often some common themes when it comes to when symptoms started, how many healthcare providers it took to get an accurate diagnosis, and specific feelings and concerns after being diagnosed. We recently surveyed about 1,000 individuals with Crohn’s disease or Crohn’s colitis through the 2019 IBD In America survey in order to find out more about life with Crohn’s. Some of the interesting responses we received about Crohn’s diagnosis are below.
When symptoms started
For most participants with CD, symptoms started earlier in life. Over 40 percent of participants experienced their first symptoms before age 18, while another 22 percent reported their first symptoms between 18 and 24 years old. Symptoms first appeared between the ages of 25 and 24 for another 18 percent of participants, and another 18 percent didn’t experience symptoms until after 35 years old. Overall, while symptoms can start at any time, and may vary from person to person, most individuals with CD reported symptoms starting in adolescence or early adulthood.
Navigating multiple healthcare providers and diagnoses
Even though many participants reported early symptoms, it still took an average of nearly seven years to receive a diagnosis of Crohn’s disease. Only 20 percent received a diagnosis before age 18, and 24 percent received their diagnosis between 18 and 24 years old. Another 40 percent were diagnosed between 25 and 44, and 16 percent were diagnosed after 45 years old. Although symptoms started on average around age 23, the average age of diagnosis was almost 30 years old, suggesting that many wait a long time for their diagnosis.
This waiting period is often marked by uncertainty, many healthcare appointments, and even misdiagnoses. In fact, about 60 percent of all participants noted that they received at least one misdiagnosis before receiving their Crohn’s diagnosis. During the diagnostic period, many reported needing to see multiple healthcare providers. Only 12 percent saw one provider in order to receive their diagnosis, while over 50 percent reported seeing two or three providers. Over 30 percent visited four to nine providers before their diagnosis, and eight percent saw ten or more healthcare professionals. Although each journey to diagnosis can be different, many experienced confusion and delays before getting the answers they needed.
How the Crohn’s diagnosis was made
In order to make an accurate diagnosis, most participants underwent a colonoscopy (80 percent). About 60 percent reported taking at least one blood test on their path to diagnosis, while another 48 percent said their diagnosis involved a physical exam or clinical observations made by their healthcare provider. Between 35 and 45 percent of participants reported undergoing additional diagnostic methods, such as a stool sample, biopsy, endoscopy, barium swallow (barium x-ray), upper GI (x-rays of the GI tract), or a CT scan. These results suggest that there is no single “right” set of tests to ultimately come to the correct conclusion. While there may be a lot of overlap in diagnostic tests performed, the specific tools used to come to a diagnosis can be quite different from person to person.
Common feelings around diagnosis
While a Crohn’s diagnosis can impact people differently depending on their age, knowledge of the condition, and other life events, there were common feelings shared by participants when it came to their CD diagnosis. Most commonly reported were negative feelings, like fear, stress, denial, or depression, however, some also experienced relief at being able to put a name to what they had been going through and being able to start treatment.
“Overwhelmed, scared, confused and wanting more information.”
“Depressed, confused over what to do, how to eat, what to eat or not eat. Anxiety over not knowing exactly what or why my body was doing this.”
“I was relieved but also distraught when I was diagnosed with Crohn's. Relieved because I could begin treatment, but it was upsetting knowing this was a lifelong disease.”
“I was scared. After 32 years, fear is the emotion that sticks with me most.”
“Part of me was glad because I finally had answers. I was also scared because I had never heard of Crohn's before. I was also very angry. I was just about to turn 20 and instead of doing what normal 20 year olds do, I was dealing with an incurable disease that would affect every part of my life forever.”
“Completely overwhelmed and I couldn’t believe it was true.”
“Numb and confused. I was so young and my body kind of went into survival mode. I really don't remember specifics about how I was diagnosed. It was like mentally I had totally checked out of what was happening.”
“Confused and worried about how my life would change. I also felt relieved once I did get a diagnosis because it proved to everyone I wasn’t crazy and my pain wasn’t coming from my head.”
“Totally overwhelmed and exhausted. I felt like I was in one of those glass houses at a carnival, trying to maneuver thru life, and when I was diagnosed, I felt like my life shattered like broken glass, and I had to try and put the pieces back together.”
What was the path to a diagnosis like for you? Did you experience some of these same trials, tribulations, delays, and emotions? Let us know what your journey has been like, and how you navigated your diagnosis.
Have you completed the IBD in America survey? Answer poll for survey link.