Controlling your journey with inflammatory bowel disease (IBD) while overcoming inequity in IBD health care

(BPT) – For those living with inflammatory bowel disease (IBD)—like Crohn’s disease (CD) or ulcerative colitis (UC)—every day can feel like a struggle. From a wide variety of symptoms that can include weight loss and severe abdominal pain to fatigue and persistent diarrhea, IBD is truly a chronic illness that can impact many aspects of a person’s life.This struggle is something that Brooke Abbott—a 40-year-old Californian and IBD patient advocate—can certainly relate to. After having her beautiful baby boy, she developed abscesses and extra-intestinal manifestations like joint pain, uveitis (light sensitivity), and hair loss, which she initially attributed to postpartum—before later learning these were all signs of UC. At her lowest point with the illness, she would experience extreme fatigue, rapid weight loss, urgency every time she ate, and bloody stools. This all changed in 2012, when she had her colon surgically removed, then had an ostomy bag placed for six months. Now, Brooke lives with a j-pouch (an internal pouch shaped out of the end of her small intestine), which combined with her previous surgery, has allowed her to live a healthier and happier day-to-day as related to UC symptoms.The symptoms of her disease were not the only struggles that Brooke endured. Her healthcare journey was made even more challenging through disparities in care that are sometimes experienced by patients of color. She dealt with consistent doubt regarding her symptoms from doctors, some of whom went as far as to accuse her of drug seeking. Others told her she couldn’t have IBD if her parents were Black. To quote Brooke directly, she felt “gaslit,” as she was told her symptoms were psychosomatic (or physical symptoms that lack a medical explanation), with doctors not providing her with all treatment options as they thought her case was mild to moderate. Even when preparing for her colon removal, she was met with misinformation on the process and her fertility. In her words, all of these struggles led to her feeling like the illness was her own fault. It took her almost 12 years to find a care team that listened to her fully and addressed her symptoms.“Dealing with a chronic illness can feel impossible some days, without adding in the layer of inequity, disparity, and racism I found myself combating day-to-day,” Brooke reflects. “Although every day was an uphill battle, with each attempt to advocate for my own health, my resolve got stronger and stronger. I learned to be a subject matter expert on myself and be my own biggest advocate.”Unfortunately, Brooke is not alone in her experience. Between 1970 and 2010, IBD incidence rates rose 134% in communities of color, compared to only 39% in white IBD patients. Despite the disparity in those numbers, inequalities around access and quality of care remain. Her experience and the experiences of patients like her drove Brooke to become an advocate for equitable health care and addressing unconscious bias within the broader healthcare system. Brooke hopes that greater awareness of issues like these could lead more doctors to reflect on whether they’re operating from a position of unconscious bias or if they can do more to address bias within their healthcare systems.“You are the person who knows you best—and that is the most crucial piece of the puzzle when it comes to managing your own health. Do your research, keep a journal of your symptoms, and never be afraid to advocate for yourself. I promise, there is hope on the other side of every challenging conversation.”What does hope look like for Brooke? Today, she focuses on her physical and mental health, being a mother, and providing a voice to others—all things that led her to create her own social media platform, The Crazy Creole Mommy, which she uses to further her IBD advocacy. Additionally, she’s formed a nonprofit advocacy group to support moms living with or caring for people living with IBD called IBDMoms.* Through both initiatives, Brooke has been able to encourage, challenge, and support those living with IBD.For those newly diagnosed with IBD or feeling alone in their IBD journey, Brooke has three key tips for how to feel settled and supported. First, learn as much as possible about the diagnosis, to help feel confident when speaking with healthcare teams. Second, be patient when finding the right treatment plan—the process can take time, but exploration is key in finding what works best. Finally, find community with others who understand and empathize with the IBD journey. Social media and online support groups can be great for creating meaningful connections with other patients.“Finding your voice is vital when it comes to advocating for your own physical and mental health. By having patience, grace, and strength, I feel in control of my own journey with IBD—and I know others can too.”Those living with CD or UC are encouraged to address all concerns with their healthcare providers and to join Brooke and other IBD advocates through IBD Social Circle, an online community sponsored by Janssen Pharmaceuticals, Inc., that is dedicated to supporting the IBD community. For additional patient and caregiver resources created by Color of Crohn’s and Chronic Illness (COCCI) with communities of color at the center, visit www.COCCI.org.Sponsored by Janssen Biotech, Inc.*Janssen Biotech, Inc., does not have control over the content or posts on IBD Moms or The Crazy Creole Mommy.