During my first week of college in 2001, I started experiencing flu-like symptoms: fatigue, abdominal pressure, and frequent urgent trips to the bathroom—having loose stools up to six times per day. My daily diet consisted of white rice, oatmeal, and a little cheese, all binding foods that can harden your stool and ease diarrhea symptoms.

Within two years, I went from being told I hadirritable bowel syndrome(IBS) to dropping 30 pounds through blood loss and frequent bowel movements that plummeted my blood pressure, leaving me sweating, nauseated, and lightheaded every time.

I was unsatisfied with my diagnosis—it felt like more than IBS—and wanted answers and relief from my symptoms.

Ulcerative Colitis vs. Crohn’s Disease: What’s the Difference?

Challenges Throughout Diagnosis and Treatment

After going through the motions with numerous doctors for eight years—none of whom took my symptoms seriously—I finally found agastroenterologist(or “GI,” a doctor who treats digestive disorders) knowledgeable in inflammatory bowel disease (IBD).

He was the first to believe me. After asking three questions in my first appointment, he suspected I hadulcerative colitis(UC) and confirmed the diagnosis with a colonoscopy.

I had surgery to remove mycolon(a part of the large intestine) in 2012. Having my colon removed technically meant that I no longer had UC, yet I continued experiencing I continued to have chronicpouchitis(inflammation in the lining of a pouch created during surgery to treat UC) andflaring symptomsthat affected areas outside of my intestines, like my mouth, scalp, and skin over the next 10 years.

Eventually, my doctors found that the disease had moved to mysmall bowel(small intestine), and I was finally rediagnosed withCrohn’s diseasein 2023.

The Medical System: Missing the Mark for Black Women

The most challenging part of my journey has been the racism and sexism embedded in the healthcare system, creating significant barriers to care. I wouldn’t have encountered so many complications if I had been listened to, believed, and treated sooner or more appropriately.

Only once we recognize that this bigotry exists can we begin dismantling it. Only then can we make healthcare more palatable for Black patients.

A Verywell Report: How Racism Damages the Black Health Experience

What I Wish I Had Known About Crohn’s

How To Advocate for Yourself

If I could go back to college when I began experiencing symptoms and give my younger self any advice, this would be it:

My Own Crohn’s Journey Helps Me Help Others

Deep in my IBD journey, I felt incredibly isolated. I couldn’t find anyone who looked like me or shared similar experiences. So many people stay silent for fear of being dismissed, belittled, or ignored.

Once I found the resources and tools I needed, I had to share them. I wanted to be a bridge to resources for people like me: the mom with IBD who’s been marginalized or faced seemingly impossible barriers. Once I achieved that goal, it became just as crucial for me to share our stories with decision-makers in Congress to make a systems-level change.

When I reflect on my journey, two things fill me with pride: First, seeing my son’s empathy and fierce advocacy grow. Observing my struggles has shaped him into someone outspoken, compassionate, and ready to help others. He inspires others to do the same.

As told toLauren Panoff, MPH, RD.

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