For Black patients living with ulcerative colitis (UC), it’s more than just an inflammatory bowel disease. Life with UC is also complicated by systemic hurdles – many of which are not even related to the medical condition itself!
Unfortunately, it’s multifaceted. Recognizing when your current treatment isn’t delivering the best results can be difficult. Especially if your doctor isn’t well-versed in the unique symptoms and illness presentation in Black patients.
Many doctors are merely outdated or inadequate in their regimens. As a result, patients are put on frequent steroids and 5-ASA drugs, missing out on more advanced, effective therapies.
Not sure if your UC treatment is up to par?
Here are five key signs it’s time to reevaluate your UC treatment and advocate for more effective care.
Know your most pressing symptoms.
If you’re still dealing with daily or near-daily bloody stools, if you’re struggling with urgency that keeps you near a bathroom, or if you’re experiencing abdominal pain even while on medication, your treatment is probably lacking. And underlying inflammation is likely to blame.
This is why modern guidelines emphasize achieving clinical remission. In other words, normal bowel habits without bleeding or urgency. This is a particularly important point for Black patients, who repeatedly face higher risks of rectal bleeding and severe symptoms.
If your treatment protocol isn’t stopping these symptoms, it’s time to talk to your doctor. From there, you can move to specialized care, have your disease activity assessed using biomarkers and endoscopy, and then explore advanced options that work for you.
Are symptoms persistent after eight weeks despite starting a new therapy? Then it’s most certainly time to make a change…
RELATED: The Secret UC Remedies That Cost Almost Nothing…
Multiple hospital visits and emergency room visits are a major red flag. After all, frequent flares mean your current regimen simply isn’t working. And if it’s not maintaining disease remissions, it may be allowing progressive damage to your colon.
For this reason, modern UC protocols use a ‘treat-to-target’ approach. This means regular monitoring and precision tuning – recognizing exact symptoms, noting medication side effects, and comparing drug pros and cons consistently over time.
If you’ve had more than one or two significant flares annually, it’s time to push for a specialist review. New biologics, which utilize biotechnology to target specific molecules and immune pathways, may be the way to go.
The use of oral steroids multiple times per year is not sustainable.
First, you have the side effects. These include issues like weight gain, mood swings, insomnia, bone thinning, and increased infection risk. Then you have the fact that steroids are for short-term flare control, not long-term management.
It’s no wonder then that many irritable bowel disease guidelines strongly recommend steroid-free remission as a key goal. If you’re stuck in a pattern of steroid dependence, this indicates your maintenance therapy needs to be tweaked.
Because Black patients sometimes face higher steroid exposure due to disparities in advanced therapy access, long-term health impacts may be more pronounced.
You are your best advocate! Demand a plan that minimizes or eliminates chronic steroid use. Period.
RELATED: REMEMBER: Not All UC Symptoms Affect The Gut!
It’s good to have your symptoms improve, but that alone isn’t enough. You also want to have a true, deep remission that includes something called ‘mucosal healing.’
Basically, this means there is a visible improvement, or even resolution, of inflammation as observed via colonoscopy. If you aren’t showing such improvement, you remain at higher risk for flares, complications, and even colon cancer over time.
Consider your examination history. If your last scope showed ongoing ulcers or inflammation, or if markers such as fecal calprotectin or C-reactive protein remain elevated, it’s time to reassess.
The complication here is that many patients feel “okay enough” on basic treatments but have silent inflammation progressing. This is why you should insist on objective monitoring.
Endoscopic remission should always be a treatment target, with reassessment typically at eight to 12 weeks after starting any new therapy. It can be easy to get anxious, but stay the course, note your symptoms, and see what examinations show. If the results aren’t there, don’t lose hope.
There are always new regimens and medications that can be applied.
How much is your UC impacting you on a daily basis?
If it forces you to miss work, avoid social activities, or battle constant fatigue and anxiety, you deserve better. Again, treatment isn’t simply about symptom mitigation. It’s about improving your overall life, allowing you to live as normally as possible.
If a chronic uncontrolled disease is contributing to depression, financial strain, and isolation, these burdens need to be addressed.
It’s not rocket science. Just consistency and some self-advocacy.
Always bring your concerns only to an IBD-specialized gastroenterologist. Take a symptom journal with you to your next visit, one in which you log flares and possible triggers, note changes in severity, and document any changes related to tweaks to your drug regimen.
Advanced therapy options should be one of the first things on your mind. You don’t need to know the exact mechanisms and names; simply ask about options beyond aminosalicylates and corticosteroids.
Given that Black patients are often underprescribed these options, it’s important to explore these alternatives before worse outcomes can occur. Be direct in advocating for them, especially if your disease is no longer mild or moderate.
Lifestyle support matters too.
Discuss with your provider whether a dietitian can help, or, at the very least, ask for guidelines on daily meals and food choices. Proper eating, stress reduction, and regular exercise are all potential game-changers, but first, you have to find the right levels for you.
Don’t wait for a crisis. If any of the five signs outlined here resonate, schedule that reevaluation conversation this month. Better control is possible, and you shouldn’t need to twist an arm to get it. The Association of Black Gastroenterologists and Hepatologists (ABGH) even provides a ‘physician map’, so if you’re not sure where to turn, don’t fret.
Your new, improved life is around the corner…
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