I'm a Black Mom Diagnosed with Crohn's Disease

There are an estimated 3 million Americans impacted by irritable bowel disease and around 780,000 of those have Crohn's disease. How many of those look like me is unclear and likely underreported.

Mother and daughter pose for a selfie against a blue sky
Photo: Amira Barger

In 2013, I was diagnosed with a chronic autoimmune disease I'd never heard of. Namely, because Crohn's Disease is a disease that historically impacts people of Jewish ancestry. I'm Black.

Spring of that year, life was starting to get back to normal. Or as normal as it can be with a newborn infant. I had recently returned to work from maternity leave. I was returning home from work when I first felt a sharp, debilitating pain in my abdomen. I'd just pulled into our driveway after picking my 2-month-old daughter up from daycare.

Getting the car into park as quickly as I could, I found myself hunched over and writhing in agony as the tears started falling. I sat there for what seemed like an eternity, clenching my abdomen, cursing under my breath, and praying the pain would stop.

But the pain didn't stop. I could not move, stand, or hold my new baby girl. Though I usually pride myself on my independence, common sense won out, and I realized I needed help. I mustered the strength to call my husband and ask him to head home early. Arriving home, he managed to usher our baby girl and me inside the house.

Navigating the Unknowns

Three hours later, my husband drove through rain and hail as sirens wailed from every direction as red and blue lights whipped by. The roads were flooded, people were panicked, and chaos showed up at exactly the wrong time. I arrived at the emergency room during a tornado in Dallas, Texas, where we were living at the time.

Infants were not allowed in the ER, so my husband had to wait in the car with our daughter. I was alone, in pain, and wondering, in the midst of desperate prayers, if a tornado coming to get me would be the worst thing at that moment.

My white blood cell count was through the roof, and my fever kept spiking. A barrage of tests was ordered, which meant several vials of blood, lots of poking and prodding, and more tears. I sat alone in a cold ER exam room, but it was anything but silent.

I could still hear the muffled sounds of tornado sirens and the rain beating on the roof of the hospital. My thoughts were interrupted as a nurse knocked, came in, and handed me a breast pump. I was so preoccupied with the pain in my abdomen I hardly had time to realize that I hadn't fed my daughter for hours.

I sat there alone, pumping and crying. Largely because I was lonely and scared, but also because breast milk for a new mother is like liquid gold. I could not believe I'd have to dump this down the drain. It only added to my misery and frustration. Breastfeeding was immediately off the table moving forward, with all the antibiotics and drugs pumping through my IV.

My husband and daughter were forced to return home while I was locked in a hospital room for days. At the time, our 2-month-old would barely take a bottle, even of my own breast milk. She wanted the real deal. How my husband managed to bottle train her in 24 hours, I don't know, but he's a real-life hero.

The doctors initially thought I had appendicitis and began prepping me for surgery. Given the intense abdominal pain I was experiencing, it was the most obvious explanation for my symptoms. A surgeon came into my room and spoke to me about what to expect, then unceremoniously left.

I'm sure I must have nodded or replied in some way. But it was like I had an out-of-body experience, watching myself in the hospital bed while the surgeon said a bunch of words that sounded something like Charlie Brown's teacher: "wah wah wah wah wah."

A New but Rare Diagnosis

Before the operating room was ready, a specialist reviewed my x-rays and ruled out the appendectomy - surgery was canceled. A range of emotions swept over me, from relief to anger. But I was mostly flabbergasted at the lack of answers by this point. It was nearing midnight - this saga had gone on for nearly nine hours. A conveyor belt of specialists saw me, consternating over what could be ailing me. They conferred with one another and decided to test me for (I kid you not) bubonic plague and anthrax poisoning.

Perhaps this goes without saying, but wondering if you're dying is a dramatic and mentally exhausting experience. Especially when you're wondering how it's possible you've fallen victim to some kind of biological warfare. More than a few specialists later—and after a particular frustration-induced tantrum that involved me ripping my IV out of my arm, demanding to be released—we had some answers.

A gastroenterologist popped into my room. He said "I think I know what's going on here, and we're gonna get ya fixed up. Don't worry!". He patted the end of my bed, smiled at me, and left as quickly as he had arrived. I was partially relieved. At least it seemed I would finally get some answers, and at least I didn't have the plague. I also had a million questions.

He diagnosed me that night with Crohn's disease. I would later learn that diagnosing Crohn's disease is rather complicated. More tests were needed to confirm because though the symptoms and lab work all pointed him toward his diagnosis, I did not fit the typical patient profile - being Black and all. It was determined that it was likely onset due to the massive influx and subsequent fading of pregnancy hormones, combined with the lingering physical trauma of an emergency c-section that had wrecked my body just weeks earlier.

My disease still tries my patience, and once in a while, much to my disappointment, my body betrays me. But I'm extremely lucky that, over the years, I've been able to manage my disease. Big picture, I'm alive and able to love on my family. If you are as unfamiliar with what Crohn's disease is as I was, it is part of a group of digestive diseases often categorized under the header Inflammatory Bowel Disease (IBD). It's a disease for which there is no cure. The Crohn's and Colitis Foundation defines it as "a chronic inflammatory condition of the gastrointestinal tract."

Crohn's Disease and Black Communities

There are an estimated 3 million Americans impacted by IBD—around 780,000 of those have Crohn's disease. How many of those look like me, is unclear and likely underreported. My hope is that the telling of our stories, Black people with Crohn's disease, will help demystify what may be happening to others and open the floodgates for community among us. So little is known about the long-term impacts and daily impacts of Crohn's disease on African Americans, because of the decades-long myths around IBD only impacting white people and the systemic racism that has led to a lack of access to healthcare and misdiagnosis for many African Americans.

What we do know is that Black children with Crohn's often suffer more than their counterparts. A keen case of health disparity. Crohn's is hereditary, and there is a possibility my daughter will be one of those Black children someday. I cringe at the thought and am eager to raise more awareness among Black communities so that we can care for our children in the most informed ways.

I was hard-pressed in 2013, and am to this day, to find anyone that looks like me and experiences similar factors of access to health, socioeconomic background, cultural background, etc. Let alone finding a gastroenterologist that looks like me AND understands my disease. It has been a lonely journey navigating a disease no Black family member or friend I know has heard of or considered. What we have learned over the years is that Crohn's disease impacts many people from historically marginalized groups. I am one of those people, a Black woman and mother. At present, the National Institute of Health is funding a study that will dig into the impacts of Crohn's disease on African American patients like me.

When I began exploring and attending patient conferences on my newly diagnosed disease, the concept of extra intestinal manifestations was a hot topic of conversation. Extra intestinal manifestations occur outside of the gut - symptoms affecting skin, eyes, esophagus and other parts of the body. It was also a concept denied by some.

I found myself countered in many exam rooms when I explained the symptoms I experienced that lived outside my gut. My eyesight was blurry, my eyes were swollen, and my skin was doing things I did not know it could. I was consistently lethargic, and the texture and thickness of my hair was changing. I knew in my bones it was the Crohn's.

Finding a healthcare provider that agreed was near impossible. And as many Black patients can attest to, sitting on an exam table in front of a healthcare provider who refuses to believe you know your body is all too common. So I suffered. Then, I acted.

I joined the staff of the Crohn's and Colitis Foundation of America in 2015. While I am no longer staff, I remain a staunch advocate for patients' rights and am eager to continue raising awareness about IBD in Black communities. If you live with IBD and look like me, you are not alone. We are here.

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