Whether it’s abdominal pain and bathroom emergencies, extreme fatigue, fever, nausea, or arthritis and anemia, UC brings a whole host of symptoms most people wouldn’t expect.
And for Black patients, the disease comes with even more issues. Severe flares, higher hospitalization rates, longer hospital stays, and increased risks of complications and even mortality are all part of the problem.
Recent studies also show that Black Americans with UC face a roughly 40 percent higher mortality risk in some analyses, with more emergency department visits and much higher odds of certain complications.
These aren’t just statistics—they reflect a very daunting reality. Recent data suggest a rising proportion of IBD cases among Black individuals, underscoring the need for improved care and attention to disparities. Relying solely on treatments like steroids or basic 5-ASA medications may leave ongoing symptoms unaddressed and impact daily life.
You deserve better.
Demanding excellent, equitable care begins with knowledge….
RELATED: 5 Signs It May Be Time to Reevaluate Your UC Treatment
When diagnosed, Black patients often have higher rates of hospitalization, roughly 19.5 percent compared to 13.2 percent in white patients. Black patients are also less likely to be under the care of a gastroenterologist specializing in IBD, and therefore less likely to receive advanced treatments like biologics or small-molecule therapies.
What does this mean overall?
Basically, this leads to two main outcomes: (1) more reliance on steroids and (2) poor disease control. Of course, genetic and environmental factors also play their roles. In many Black patients with UC, the rates of rectal involvement are higher, with systemic issues like stress, food access, and healthcare biases compounding the burden.
From increased emergency visits to higher readmission rates post-surgery, or just worse impacts on daily life, the consequences cannot be overstated.
Bottom line: basic symptom management is often insufficient. Relying exclusively on standard treatments may result in ongoing flares and prevent some patients from reaching optimal disease control.
Or to put it bluntly: “good enough” is not enough.
First things first: ongoing bleeding, urgency that limits your life, or persistent fatigue should be discussed with your healthcare provider. Modern UC care aims for steroid-free remission, mucosal healing, and improved quality of life.
Not sure if you’re receiving the best care?
You should always push for specialist care and monitoring. To begin, see an IBD-experienced gastroenterologist, not just a general doctor. Many regular colonoscopies, biomarkers, such as fecal calprotectin, and therapeutic drug monitoring are all part of this.
And most importantly, with the help of a gastroenterologist, you can personalize your treatment and catch issues early.
Unfortunately, many Black patients simply lack this level of specialized oversight.
But you can change that! One way is by simply seeking second opinions at centers with IBD programs.
In doing this, it’s important to know your advanced therapy options. Guidelines from the American College of Gastroenterology (ACG) and American Gastroenterological Association (AGA) now recommend early use of certain therapies for moderate-to-severe UC.
These include:
Now, you don’t need to know the ins and outs of these therapies; that’s the specialist’s job. However, you should at least recognize that many of these advanced therapies are underutilized in Black patients.
So, don’t settle. Ask about these options if you’re still experiencing flares on basic medications. Early, proactive treatment may help reduce complications, lower the need for surgery, and improve long-term outcomes for some patients.
It should be noted that not settling isn’t merely about the advanced therapies you use. It’s also about ensuring that you receive a full lifestyle approach. In other words, holistic health as well. This means going beyond pills and working with your healthcare team on nutrition, stress, and other socioeconomic barriers that prevent proper treatment.
For one, you can work with dieticians, nutritionists, and other specialists on eating a low-residue diet during flares, and an anti-inflammatory diet overall. Your team can also help you access patient assistance programs and advocacy groups, if you still feel like you’re lacking.
Mindfulness practices, basic meditation and yoga, and moderate body-weight exercises are all vital pieces of the puzzle, too. You don’t need to reinvent the wheel here. The trick is to find what works and what doesn’t; if something is effective for somebody else with UC but not for you, that’s okay.
At the end of the day, knowing your body and treating it with respect is the most important aspect of all.
And when surgery is an absolute must, know the consequences. For severe or refractory UC, colectomy (removal of the colon) can be life-changing and even curative for the colonic disease. That said, many Black patients often have worse post-surgical outcomes due to later intervention or access issues.
To address this, seek high-volume IBD surgeons who are highly experienced with diverse patient populations. The Association of Black Gastroenterologists and Hepatologists (ABGH) is the perfect resource for finding culturally competent care near you.
And last but not least, know your body. No one knows your body as you do. Track your symptoms in a log or diary, and always prepare questions for visits. You can even bring additional data, such as lab results, to get the most out of your appointments.
If your provider dismisses your concerns or relies on outdated approaches, don’t hesitate to seek care elsewhere. Check out the Crohn’s & Colitis Foundation for support networks that can benefit.
Remember, this is your health, your future, and potentially your life on the line here. Pursuing the best possible care can lead to fewer hospitalizations, less time lost to illness, improved energy for family and goals, reduced long-term risks, and other positive outcomes.
With the right regimen, remission is possible. Your health, dignity, and future are worth it. “Good enough” is not enough – and you can make that change!
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