Why I’m striving to change the healthcare experience for black and brown people with IBD
Representation creates trust, so why aren’t there more people who look like me included in research and education?
I was really tired.
I thought I could stop the bleeding like I had in the past — eat more kale. Yes, I thought it was that simple.
In the past, when I noticed bleeding from my rectum, I would go on a heavily green diet and the bleeding would go away.
As a child, I battled stomach issues and would have severe stomachaches. Doctors told me the bleeding was internal hemorrhoids.
This time, however, I knew it was not “just” a stomachache or hemorrhoids. It felt like blades were slicing my insides every time I used the bathroom.
I would begin to get anxiety every time I used the bathroom because of the pool of blood and unbearable pain. I begin to drastically limit my eating. I was having headaches, and I just didn’t feel well.
I had been having sporadic rectal bleeding for 4 months and then more consistently for 2 months before I finally went to the hospital.
I went to a colorectal surgeon and explained my symptoms, telling him that I felt like I had some type of infection.
The doctor listened, but insisted there was no sign of infection. I didn’t feel like he believed me, but I was content with the fact that he ordered some blood work and did an exam.
Three weeks passed without hearing any news.
I remember driving to work with the worst headache of my life. I could barely keep my head up while driving. Later that day, I went to urgent care.
I was sweating and shaking with a headache. The nurse practitioner said she couldn’t figure it out. I asked her to check my colon.
She was so shocked by what she saw that she said, “Oh my, this is most likely where your issues are stemming from. You have to contact your doctor.”
I knew it was my colon — the same way I knew it when I told the doctor 3 weeks prior.
I contacted the colon doctor and asked why I hadn’t been notified about my results. His response was that they didn’t see anything irregular.
After 3 more days of pain, with a rising fever, I went to his office.
And there it was — an infection in my colon. As I was being examined, an abscess the size of a golf ball popped. Unhappily, I was headed to surgery the next morning.
I was upset and I was frustrated. I went for help and didn’t get it until it had become an emergency.
After several surgeries and setons placed in my colon for fistulas, I was getting sicker. My mobility was at an all-time low; I was crawling to move around, or dragging my right leg because it was locked from arthritis.
The doctor suggested I could have a rare form of Crohn’s disease called perianal Crohn’s disease, a difficult-to-treat form of the disease that can involve fistulas, fever, ulcers, anal abscesses, and other highly painful and uncomfortable symptoms.
At first, I was in denial. Crohn’s was a disease that I was familiar with because of a family member, but her symptoms weren’t like mine. She didn’t have mobility issues. She didn’t have eye infections. She didn’t have memory fatigue. She didn’t have hair loss.
And she certainly didn’t have fistulas!
I was positive I didn’t have Crohn’s disease — until I wasn’t.
After getting out of denial, I researched and learned that Crohn’s wasn’t a one-size-fits-all type of disease.
While I had seen it presented one way, I quickly learned that with five types of Crohn’s disease, there’s no limit to how it can present itself. It’s a unique and complicated disease with a unique set of circumstances for each patient.
Read full Why I’m Striving to Change the Healthcare Experience for Black and Brown People with IBD by Melodie Narain-Blackwell.