My Misdiagnosis Story And How My Crohn’s Was Eventually Diagnosed
I would like to say that my story is a one-off. But sadly, I’ve seen far too many stories shared with similar themes and plot twists like mine. inflammatory bowel diseases (IBDs) like Crohn’s disease and ulcerative colitis are sneaky buggers and can sometimes hide in plain sight. While IBD diagnosis can be easy for some to attain, others may struggle for years with misdiagnosis and medical gaslighting. This is my misdiagnosis story and how my Crohn’s disease was eventually diagnosed.
Hearing about a quick diagnosis process
About five years back, I sat on a patient panel at a medical conference with another Crohn’s patient. He had the fastest diagnosis story known to mankind (or at least Jaime-kind). He shared his truth and it infuriated me. It wasn’t his fault. I fully admit — I was jealous.
The friendly fellow sitting on my left talked about his 2-week, start-to-finish, diagnosis story.
Let that sink in. Two weeks.
He started experiencing gastric upset and severe pains. There was some blood. He immediately took to the internet and printed out what he found. Called an NYC gastro office and asked if they had an emergency opening. The doctor saw him one or two days later. He took the printouts to the appointment, and the doctor listened and didn’t chastise him.
Misdiagnosis and medical gaslighting heavily impact women, especially women of color. I'm just throwing this out there.
I applaud you if you managed to read that entire portion of the story without throwing your phone, tablet, or computer across the room.
My story of misdiagnosis and dismissiveness
My diagnosis story was the polar opposite. He was the perfect-case scenario; the ideal diagnosis story. And I was the what-not-to-do because of the consequences, aka the worst-case scenario.
Around the age of 15, my GI symptoms were pretty intense. They caused me to miss a lot of school days.
My pediatrician hit a wall with my case and began outsourcing to Pediatric Gastroenterologists for consults. This particular pediatric gastro group largely ignored me. The doctors would speak over me and talk to my mother. They ran bloodwork and ultrasounds, which didn't provide enough answers. Lastly, the group ordered an upper endoscopy.
At that time, I was scared of needles and the idea of anesthesia. The thought of an upper endoscopy felt like a waking nightmare.
Awful tactics used to convince me to agree to undergo the test included a nurse telling me the doctors need to know if you have cancer. Another had a doctor telling me that I must not be all that sick if I don’t want to have the scope and get better. I felt pretty beaten down from that point on.
Not much was accomplished after undergoing the endoscopy. Severe inflammation was found and then promptly ignored. One of the pediatric GIs ordered a prescription-strength antacid. Another accused my mom of enabling bad behavior.
The doctors came to the conclusion that I had severe irritable bowel syndrome (IBS). They also concluded I was just a hormonal and emotional teenaged girl and prescribed Valium.
Fears and concerns around doctors
A new pediatric gastroenterologist, who worked for a different medical group, wanted to place me on a psych hold. He didn't like that I broke into an ugly cry when he demanded I drop my pants for a rectal exam.
I was in the exam room for all of 30 seconds and a strange man demanded, "Drop your pants and bend over."
The power dynamic felt bad even with my mother in the room, and I lost my marbles.
My fears were used against me by these doctors. By the way, all of the doctors were men. The treatment of my case is representative of a form of medical gaslighting. This medical gaslighting left me fearful of seeking new doctors as a teen. I only relented in seeing a new doctor as an adult, because I was struggling to function at work.
You may be wondering why a colonoscopy wasn’t ordered during those early years. I wonder why, too! After all, they did force me to go through with the upper endoscopy.
A second opinion years later and a diagnosis of Crohn's
As it turns out, I had a lot more than IBS going on. Just after my 24th birthday, I relapsed hard with frequent runs to the bathroom and severe pain and nausea. At the urging of a friend with ulcerative colitis, I found an adult gastroenterologist and went over my case history. They ordered my pediatric records and performed a colonoscopy and upper endoscopy.
There was severe inflammation still in my stomach and now in the duodenum. The lower scope showed inflammation and ulcerations in my rectum and the scope could barely gain access to the terminal ileum. My colon itself showed visual signs of past disease. I was visually diagnosed with Crohn’s disease, which was confirmed with pathology.
This is the part that makes me so sad, mad, and enraged. The list of adjectives can go on.
Years without a diagnosis and without proper treatment
In 2012, Crohn’s disease and extraintestinal manifestations took over my life and left me having to file for disability. During that process, I was able to obtain some of the pediatric records along with my diagnosis records. The pediatric info showed a picture of a very sick child who was medically neglected.
I may not be able to say what a colonoscopy at age 15 would have shown. But I do know what was missed.
Another seven years passed until I received proper treatment for Crohn's disease. Having such poor medical care over the course of my formative years did leave me with medical care provider trust issues. Thankfully, I’ve been able to form a wonderful team over the past several years and my health for the first time in two decades is taking a turn for the better.
Do you or someone you know have a misdiagnosis story? Myself, and the rest of the IBD team, are here for you.