Black Lives Matter in the IBD Community, Too

In recent weeks, months and years, we have witnessed far too many hate crimes toward our Black brothers and sisters. It is not unknown to us that many Black bodies have been tested upon without fair pain medications, expected to endure tremendous suffering in the name of science. Within the healthcare system, not only do Black folx face significant health disparities and delays to diagnosis, they also deal with uphill battles when it comes to accessing good insurance, care and treatment options.

With this blog post, I aim to shed light on the stories of 8 lovely Black inflammatory bowel disease (IBD) patients while sharing the resources of 3 die-hard Black IBD patient thought leaders, along with the resources of 5 prominent Black gastroenterologists who are leading the charge in ensuring the gastroenterology field continues to include more diverse Black voices. My hope is we can continue to make strides in eliminating disparities in minority health by sharing these and other very real stories and how Black patients continue to advocate for themselves in spite of significant hurdles.

---

PATIENT STORIES

TARYN – Ulcerative Colitis Warrior

My name is Taryn. I’m 38 years old and I grew up in Sacramento, CA. I was diagnosed at the age of 5 with Ulcerative Colitis by a Pediatric Gastroenterologist at Phoenix Childrens Hospital. I have IBD-related (enteropathic) arthritis diagnosed around 2012 by a Rheumatologist and GI.

When you’re diagnosed in your childhood, it is impossible to remember life before IBD.  What I remember is the moments when I felt different from my peers.  The anxiety about slumber parties…wondering if I would embarrass myself by going to the bathroom all the time. Sitting on the bench during PE when the anemia was so bad.  Missing months of my freshman year of high school because of surgery and having emergency surgery a few days after my high school graduation.

My IBD has a big impact on my professional career. I work in disability policy. A lot of my career has been focused on making sure people with disabilities and chronic health conditions can get the support they need to thrive in school and at work. I am also an unapologetic healthcare voter.  I know firsthand how lack of insurance can transform our lives and choices as I nearly had to have emergency surgery without health insurance coverage due to my pre-existing condition prior to the passage of ACA.

My mom was a great advocate from the very moment I got sick. She taught me from the very beginning how to advocate for myself by preparing for appointments with questions, etc. I have also been fortunate to have a great team at every point in my journey with IBD so I don’t feel that I experience bias with my doctors.

But, I’ve definitely confronted bias in ER settings. This includes a lot of microaggressions.  I’ve had nurses question my pain levels. For example, a nurse once openly expressed doubt about my responses during an ER Intake.  I ended up throwing up on her (by accident) and being rushed into surgery later that day.  I had a history of emergency bowel obstructions but she kept implying that I was exaggerating and re-asking questions I had answered as if she didn’t believe me.

I’ve also seen how my assertive form of self-advocacy often results in me being labeled as angry or “difficult.” I once had a medical student come into the examination room and ask a series of questions about my symptoms.  He got upset with how I was answering the questions and the conversation changed tones when I asked him to wash his hands before beginning an abdominal exam.

He got visibly annoyed and told me I was being difficult when he was just there to help me. This story actually has a positive outcome. I’m pretty sure he went to his supervisor to talk about what happened and they both showed up later. The new doctor, who was a Black woman, asked me the questions, listened to my concerns and made me feel seen and heard. I’ll never forget the look she gave the medical student after her inquiry was done.  I can’t project what she or he was thinking but I do know I felt seen and heard in that moment. Unlike the medical student, she neither implied that I was withholding information or lying, nor expressed doubts about my response; she just listened. I know I got better care because she got me.

Some things I’d like to share with other Black people living with IBD: Be your own advocate! Use online resources, including the Crohn’s & Colitis Foundation, to learn more about your disease and available treatments. Come prepared to your appointments as much as your health allows. And let your team know that you want to be an active partner in your care and don’t allow them to make decisions without your input and consent.

And remember, there is an amazing IBD community of support that exists on social media. Reach out and connect to this community when you feel like you need that support. You don’t have to face this alone!

So how do I own my ulcerative colitis? I accept my UC as an integral part of my identity from my career choices, my personal connections, and my presence online. I’ve had more than 30 years to adjust to my UC but understanding how IBD and treatments affect our mental health is a key part of us being able to fully own this part of ourselves.

SONYA – Crohn’s Warrior & Ostomate with Perianal Fistulizing Disease

My name is Sonya. I am a 56-year-old mom of three adult children and a television news reporter in the Minneapolis area. I am also an advocate for Crohn’s Disease. I was diagnosed with Ulcerative Colitis in 1985, and shortly afterward, the diagnosis changed to Crohn’s disease.

I was in college when I first fell ill, although I think I had symptoms of IBD earlier. I suffered from constipation, bloody diarrhea, weight loss, and stomach cramps. I started bleeding from my rectum when I was a college student at the University of Maryland. I freaked out! I was also living in the dorm, which made it challenging to manage my condition. At one point, I was admitted to the hospital and had to sit out a semester.

During that time, diagnostic tests weren’t that good, and it took doctors almost three years to finally diagnose me with IBD. My symptoms are severe. I have had recto-vaginal fistulas and abscesses that took a long time to heal. I’ve been on many medicines over the years, but they always stop working at some point. I have been on total parenteral nutrition (TPN) several times and I was fed intravenously for the past two years, no food, and I had my colon removed in January. My ileostomy saved my life.

When I was first diagnosed, doctors didn’t think I had IBD because I am Black. Yep, a physician actually said, ”It’s primarily a Jewish, Mediterranean disease, let’s look at something else.”  On the suggestion of a family friend, I went to a black GI where I lived at the time. He correctly diagnosed me with IBD. I was also able to join the Howard University IBD support group. It was comforting being able to talk amongst my peers without feeling like I was the only person of color with this disease.

I am also familiar with the discrimination when it comes to pain medicine. When I’ve been in the ER and in pain and request pain medicine, which is rare because I’m allergic to opioids, they are hesitant to prescribe medication, although I’m in obvious pain. Doctors usually wait until they get CT scan results before administering pain meds. When I talk to my white friends with IBD, they tell me this doesn’t typically happen to them.

To all my Black brothers and sisters living with IBD: I would recommend staying positive and not feeling afraid to seek ”mental” help, along with physical assistance when it comes to managing IBD. Going to a therapist is sometimes seen as being weak in the Black community, but I’m here to tell you that’s not the case. Therapy has helped me considerably especially in learning coping skills when I feel anxious or depressed about not being able to eat food.

So how do I own my Crohn’s? By not allowing my illness to dictate how I live my life. I run 1/2 marathons and raised money for the Crohn’s & Colitis Foundation. I couldn’t run to the corner when I started 12 years ago. But I got sick and tired of being sick and tired and decided to do something positive to help find a cure. Even though I’m adjusting to living with an ileostomy and feel dehydrated often, I still run. And when I can’t, I walk. But I’m moving forward, and to me that’s exciting all because I’m alive. And because my stoma saved my life.

Check out Sonya’s blog here: https://sonyastrong.com/

ERRON – Crohn’s Warrior with Perianal Fistulizing Disease

My name is Erron Maxey. I am 41 years old and I was diagnosed with Crohn’s disease at 35 years old. I have Perianal Crohn’s and I have been able to battle the disease while playing basketball professionally internationally and being an advocate for others who live a very active lifestyle. I am originally from Southern California and I currently reside in the greater Atlanta area. 

My diagnosis came after having 3 rectal surgeries, one in Buenos Aires, Argentina and two in Montevideo, Uruguay. After having the last two surgeries while in Uruguay, once I returned home to the US, I went and saw a colorectal surgeon and she recommended that I go and have some tests done for Crohn’s disease.

In terms of disparities I faced along my journey, my first GI did not want to listen to anything that I had to say. Rather than listening to me, he preferred to tell me what I was dealing with. I felt unheard, frustrated and abandoned due to his arrogance of not listening to what my actual symptoms were.

I did face many difficulties in accessing medications. It was related to healthcare/insurance company denials, which I think is often heightened for Black Americans and lower-income minorities, in general. While being unemployed and having lower-end insurance, I was not able to receive my biologic for 9 months. Even though I had insurance, I did not qualify for the medication for free or for a $5 co-pay. I was told that I would need to pay $1,500 per month for two shots and this made it impossible for me to receive the medication I so needed to bring my Crohn’s under better control. My nurse case manager at the pharm company did not tell me anything about the patient assistance program. I finally learned about it from the nurses and the secretary at my terrible GI doctor’s office. Thanks to them, I was finally able to receive my prescription in less than 2 weeks.

This is an unfortunate reality for minority health – not having access to better insurance coverage policies. We already have a lot to manage healthwise and professionally. This extra burden does not allow us to access the best IBD specialists or treatment options.

To other Black IBD patients who might be facing similar plight: I encourage you to speak with the nurses about any patient assistant programs if you are not able to qualify for your medication. Also, remember that doctors only have about 6 minutes per patient so make sure that you have your list of questions ready to ask. Do so quickly because if not, you’ll miss your opportunity of being able to have some questions answered. If you need to be a bit direct about it, do so because this is about your health.

So how do I own my Crohn’s? By not allowing my Crohn’s to own me. I am not defined by Crohn’s. I do my best to control my Crohn’s through consistent exercise, diet, medication, and keeping my stress levels as low as possible.

CYRENE – Crohn’s Warrior

My name is Cyrene, I am 23, I am from London, England, and I have Crohn’s disease, Enteropathic Arthritis, Ankylosing Spondylitis, asthma, and POTS. I was first diagnosed with Crohn’s in 2014 at 17 years old, when I went to the doctor after seeing a bowel cancer campaign and realizing I had all the symptoms!

I had many tests confirming and then 6 months later, I had my diagnosis taken away, and had to navigate the next 4 YEARS without a diagnosis, before being rediagnosed in my next big flare up in 2018. I had smaller flare-ups in those 4 years, and I used to tell A&E (the emergency department) that I had Crohn’s so they would listen to me and give me the right treatment.

I definitely think my race has caused problems in my journey, particularly in A&E, accessing adequate pain medications and just generally being believed. Racism is strange: I think as non-white people, we “accept” it as part of life so we stop noticing it, or just ignore it, for want of a better world. Then when we look back, we realize the impact it has left.

I have had to fight hard for a diagnosis and to get on medications, and I’m now fighting to change my medication to another biologic. I have been dismissed more times than I can believe. I had joint problems from the age of 13, which I would continuously bring up to my doctor. But I only got referred to rheumatology at 21. From speaking to white, chronically-ill friends, my team seems much more reluctant to put me on the most effective medications. I understand this could be a coincidence, but I have a hard time understanding why this is the case for me and not them, especially when our results and disease patterns are similar.

Additionally, I have had countless experiences in A&E that I have suspected were a result of my race. One that stands out is in 2015 – I had gone to A&E because I couldn’t swallow anything, even water. I told the receptionist and she was very honest that she didn’t believe me. When I insisted, she rolled her eyes and said she would send me around to the GP but that the wait was a good few hours. She didn’t take any of my details or anything. I was embarrassed and hurt, and because I was only 18, I still had no idea of my rights and how to advocate for myself, so I went home and just couldn’t eat or drink.

I have many stories like this one and I believe the problems I have faced with regard to accessing treatment and diagnoses have been the result of many factors, one definitely being race.

My biggest pieces of advice would be to other Black patients would be as follows:

• Join the online community. For confidence in advocating for myself, and for my mental health, this is the best thing I have ever done.
• Bring someone with you to appointments. It’s harder for doctors to dismiss you when someone else is in the room (although a lot of them will still try).
• There are good doctors out there. Seek out doctors who will listen to you, believe you, and advocate for you.
• If a doctor refuses to help you, request that it is written in your official notes that you have asked for help and they are choosing not to do anything. I have heard this has been helpful to some people.

So how do I own my Crohn’s? By advocating for myself. I learn a lesson every time I see a doctor. I know that when I am dismissed, I tend to shut down instead of speaking up, so I always bring someone to appointments with me. I also own my Crohn’s by speaking out on social media and helping others. To me, chronic illness is nothing to be ashamed of, and I want to help others feel less alone in their struggles. And lastly, I own my Crohn’s by trying to build a life for myself that I can work around my illnesses and adjust to whatever my body needs each day.

APRIL – CROHN’S WARRIOR

My name is April. I am 34 years old and am half African American & half Serbian. In early 2019, I was diagnosed with Crohn’s of the ileum. I was born in LA, grew up in a suburb of Detroit and currently reside in Austin, TX.  This diagnosis came after a year of multiple week-long episodes where I would be terribly uncomfortable, bloated where I looked pregnant, dizzy, stabbing pain in my stomach when I ate or drank anything and extreme fatigue.  I would have these episodes 3 times in 2018 and end up going to the ER for two of these without any concrete answers.  It took one very good ER doctor for me to finally get diagnosed and started on medications.

One of the biggest hurdles on my journey has been accepting the disease and not being in denial about it.  I refused to take medications after dealing with cystic acne, bouts of fatigue and feeling like they weren’t helping me “feel” better. In conjunction with that, it took me 2 gastroenterologists to find MY doctor.  Having a GREAT doctor who wants answers as much as you do it SO important.  She is incredibly thorough, is taking time with me during appointments and having me consult with all types of specialists including a dietitian.  Another prominent aspect was  acknowledging that even though I “don’t look like I’m sick”and I have more good days than bad, that I do have a disease that doesn’t always manifest itself in a physical form for others to see.  When these flare-ups occur, it is the strangest thing because they just show up out of nowhere and have made me realize that medication IS necessary in controlling the disease.

In terms of disparities, I definitely think that the first two offices I visited, I faced racism and microaggressions.  My first doctor wouldn’t take my pain seriously and said that my tests weren’t reflecting the things I was saying, so I must be making it up.  He would also just stop and stare at me oddly and ask inappropriate questions about my hair- if it was real, how was it possible that it wasn’t permed, how do I make it a certain way, I need to help his girlfriend get her hair to look like mine…just very uncomfortable.  We are not here to talk about my hair, we are here to talk about my intestines, buddy!  He also never called me about my results from my colonoscopy or EGD.  They were supposed to call me and weeks went by until I finally could get a hold of someone. And then they made me come in to get my results after all that.  My second doctor was always very dismissive, looked at her computer screen most of the appointment and anytime I had a question or brought something up, I was met with aggression.  I consistently felt like I wasn’t being taken very seriously.  Also, I was constantly treated poorly by the receptionist- she would laugh and smile with everyone and when I would approach, it was like I had stepped on her foot.  I was always the only person of color in the waiting area.

As far as medications go, I didn’t really have any issues accessing my medications, but when I would go to the pharmacy to pick up a prescription, I would be met with a pharmacy staff member asking, “umm, are you going to be able to afford this?  This is really expensive.” I always wanted to roll my eyes to the back of my head because they also assumed I didn’t have insurance. It’s just not fair to us as Black patients to automatically have assumptions drawn about socioeconomic status.

To my fellow IBD warriors: Please always ask the questions you want to ask and don’t be afraid to question anything you don’t feel comfortable with. You might not be taken seriously, or people won’t think your pain is valid, but you ARE valid. There is so much discrimination in healthcare. We are witness to that given the rates of patients that go undiagnosed for certain diseases even while under the care of physician.  Keep your head up, there is a doctor out there for you and don’t ever give up even if you want to. This is YOUR body. You have every right to advocate for yourself.

So how do I own my Crohn’s? Though I am still undergoing tests and trying to identify what is really going on with my Crohn’s disease, I am not letting the disease consume who I am or defeat me.  I stay positive even at my toughest moments in having to drink that prep you pick up from the pharmacy, hahaha!  I know at times you might get low and down and that’s okay, just don’t let anything or anyone make you feel like you can’t enjoy your life and look for the little victories.  I own my Crohn’s by loving myself, being honest with myself and always looking for answers.

BYANKA – Crohn’s Warrior & Ostomate

My name is Byanka. I was born and raised in Haiti but now live in New York. I am 29 years young. I have Crohn’s disease and I was diagnosed in July 2014 via CT of the abdomen. The beginning of my journey was very difficult and confusing because I was never educated on what Crohn’s was and how it’s different for everyone. Explaining my disease to family members and friends was a constant torment because I did not know how to describe what was going on in my body. The inflammation in my ileum came with the worst abdominal pain and cramping, sometimes diarrhea or constipation. As the years passed, I’ve been doing my own research. I’ve learned from the Crohn’s & Colitis Foundation and from different doctors who have made my journey tolerable.

As far as health disparities go, I did face some issues in receiving healthcare but I’m not sure they were because I am Black. At some point in our journeys, I feel like we all have experienced some hardship with the system, mostly when medication gets denied and is unaffordable out of pocket. Also, I did have issues with pain management: the thing is when you are young, you think you can bear the pain so it’s hard to advocate for yourself. Medical professionals often have no idea what this kind of pain feels like, so you go on suffering unnecessarily.

I would tell other Black IBD patient to stand their ground, speak their mind and let their feelings be known if they face disparities or racism within the healthcare system. I used to think that I was alone but that’s not true. There is a whole network out there willing to hear and help you both in the healthcare system and online on social media. Ask for help and try your best to get the care you need and deserve.

In my disease journey, owning my Crohn’s has been the best thing I’ve ever done for myself. Crohn’s has become a part of me. I no longer deny or feel ashamed about it. I’ve learned how to embrace it and make it MINE.

LONDON – Ulcerative Colitis Warrior & Ostomate

My name is London. I was diagnosed with Ulcerative Colitis in January 2017. I was born and raised in Fresno, CA. A prominent aspect of my journey with UC was how severe it was. I had what is known as pancolitis, which is where the entire large intestine is inflamed with UC. One of the main reasons that my symptoms got so severe was because I had torn my ACL and had to have surgery a few months after I was diagnosed. I ended up getting an infection in my knee which led to me needing to take 6 weeks worth of antibiotics which completely destroyed my gut flora and worsened my UC to a point of no return.

I don’t think I experienced any plain cut and dry “racism” during my journey with UC, but I really did not appreciate the fact that my doctors didn’t allow me to have surgery even though that was what I wanted. They kept trying to use a variety of medications to see which one will work and it felt like a science experiment in that they really had no accurate idea of the actual effect of the medicine they were giving me. I really felt used as a statistic in their studies.

As an empowered patient, I had done a lot of my own research and I found that diet plays a huge role in UC. In speaking to other patients, I learned that some of my favorite foods were similar to the foods that would exacerbate symptoms of other patients. All my life, my diet has mainly consisted of meat, dairy, processed and fried foods which are foods that seemed to exacerbate my flare-ups. So my disease journey taught me how the human body is mainly designed to consume a diet of mostly fruits and vegetables. And this is what really helped me.

As far as medications go, I did not face any difficulty accessing proper treatment as Black person. I was treated at the Veterans Affairs hospital, which treated me fairly. I was active in my service in the military at the time so that likely allowed me to receive equitable care. I will say though that I really appreciated my surgeon for being transparent on which route to take: j-pouch vs. ostomy. While the option still remains open for a j-pouch, my ostomy allows me to lead an active lifestyle again without any more surgeries. The dealbreaker for me with the j-pouch was that I wouldn’t have been able to qualify for a First Class Medical Certificate to pilot flights due to frequent bathroom use so I opted to keep my ostomy.

I would like to tell everyone who is dealing with IBD to really focus on preventing the issue as opposed to reacting to the problem after the fact. Even though my doctors told me that my diet had nothing to do with it, I knew for me that that wasn’t the case. Do your own research, work with a registered dietitian, see what your trigger foods are and optimize your treatment. I can’t emphasize enough how important diet is in my case even though many doctors may tell us otherwise.

So how do I own my ulcerative colitis and my ostomy? By living a normal life again, by still having fun and doing all the things I love even while having an ostomy.

CHEALYNN – Crohn’s Warrior & Ostomate with Short Bowel Syndrome

My name is Chealynn and I’m 39 years old and from the Bronx, New York. I was diagnosed with Crohn’s disease at the age of 19. For as long as I can remember, I had unexplained fatigue but at 17yrs old when I went away to college, the fatigue became constant. I developed sharp, debilitating stomach pains accompanied by fatigue and I eventually had to stop going to school. I lost 30 pounds and went back home to get a diagnosis.

This was the beginning of my Crohn’s journey. 20 years later and I’ve had 6 major surgeries, tried all sorts of medications and had countless procedures and hospitalizations. Presently, the inflammation is controlled with biologics and I now combat malnutrition, fatigue and dehydration due to short bowel syndrome from multiple surgeries.

My care and treatment has always felt very clinical. I was never treated as a scared, overwhelmed teenager with a disease I had never heard of or had any experience with.  I don’t recall my emotional health ever being a topic of discussion with my GI. All of my experiences felt very transactional and only symptom- and procedure-related. This is one of the reasons I now specifically seek out providers of color. I’ve noticed that there’s an immediate understanding, connection and bedside manner that was lacking in my early years of treatment.

In 2018, I had a kidney stone removed (note: kidney stones can be an extraintestinal complication of Crohn’s). I was discharged with a drain in my side and 4 days after surgery, I asked my doctor for more pain meds and he refused. I had to explain to him I had over 18 years of experience with Crohn’s, had had multiple surgeries and never had a problem becoming dependent on narcotics AND that I knew when my pain was unmanageable. After struggling greatly, he finally sent a new prescription in; I got more pain medication and exactly 7 days after my surgery the pain subsided. I no longer needed or took the narcotic. I’m often reminded of his resistance in prescribing more pain meds when I read articles about the opioid crisis heavily affecting white America. In my opinion, Black American patients often are not taken seriously, don’t receive adequate pain treatment and we have to fight tooth and nail to get what we need to recover.

There was another experience with the same doctor when I asked for IV hydration as I was struggling given my short bowel syndrome. His response was, “If your mouth works, then IV hydration does not make sense.” I sat there dumbfounded because I know what my body needs and how much I struggle with retaining fluids with short bowel syndrome. I really feel that Black women are expected to just tolerate what other races do not have to so I felt the need to push back and get the care I needed. No one should ever be spoken to like that.

To my fellow Crohnies: Please know that this disease will make you feel alone and misunderstood. Search those hashtags, follow some influencers contribute at your comfort level or just observe and find comfort in what others have to offer.  If you have a supportive friend or family member ask them to accompany you to at least one doctor’s appointment, they don’t have to speak for you but having someone there for support is vital to your care. Seek out support groups and counseling to help cope with the ups and downs of illness.

So how do I own my Crohn’s? By listening to my body and taking the breaks when I need to, reaching out to my doctor when I need to and releasing negative thoughts by talking out my feelings as well as journaling. In an effort to own my Crohn’s and create awareness, I recently made a short documentary with Tina highlighting the racial and ethnic nuances of living with IBD and an ostomy: What Will People Think? A Short Documentary by Chealynn Feaster.

---

RESOURCES: IBD ADVOCATES

As many of the Black IBD patients shared, advocate resources via social media and blogs are an important source of hope and community for many of us patients. Below are 3 very prominent Black IBD advocates who have worked hard for years to eliminate disparities and to showcase that IBD does not discriminate:

GAYLYN HENDERSON, ADVOCATE FOR CROHN’S DISEASE & LIFE-SAVING OSTOMY SURGERY

At the age of 14, Gaylyn was diagnosed with Crohn’s Disease. Due to the severity of her disease, she had her entire colon removed leaving her with an ileostomy. Gaylyn founded Gutless and Glamorous (non-profit, 501c3) with the mission of empowering those living with or contemplating ostomy surgery and to erase the negative stigmas of having an ostomy. Gaylyn graduated from Benedict College, with a BS in Biology and from the University of South Carolina, with a Masters of Public Health. She volunteers every summer at Camp Twin Lakes for children living with IBD. She also works closely with the Georgia and National Chapters of the Crohn’s and Colitis Foundation. Gaylyn serves as the Ostomy and Fashion Editor for Companion Magazine for IBD. She also serve on the Inaugural Patient Advisory Committee and she is a Social Influencer for the National Crohn’s and Colitis Foundation. Through the power of social media and her own efforts, Gaylyn has come to be recognized as a leading public and social figure raising ostomy awareness. She was featured in the groundbreaking Aerie by American Eagle 2018 Fall bra campaign and is now a featured model for Aerie. She was also awarded the first-ever Catalyst for Online Community Engagement Award by the Crohn’s & Colitis Foundation. Through Gutless and Glamorous, Gaylyn aims to encourage young women and men and her goal is to help erase the stigma of having an ostomy once and for all. Follow Gutless & Glamorous on Facebook, Instagram & Twitter to learn more about Gaylyn’s advocacy work!

BROOKE ABBOTT, ADVOCATE FOR ULCERATIVE COLITIS & J-POUCH SURGERY

Brooke is the creator of The Crazy Creole Mommy Chronicles & IBDMoms. She is the mother of actor, Jaxon Honeycutt & they currently reside in Los Angeles. Brooke is a patient thought leader often representing the Crohn’s & Colitis Foundation & The Digestive Disease National Coalition on Capitol Hill. Brooke advocates on behalf of millions of IBD patients on Capitol Hill to gain access to better treatment options and GI care. She has written for many publications around being a mother living with IBD. She is also an active member of the Janssen sponsored, IBD Social Circle. Brooke has sat on advisory boards for Janssen, GaliHealth, AbbVie, Pfizer, Genentech, Arena Pharmaceuticals, American Gastroenterological Association, The Peer-Reviewed Medical Research Program for the Department of Defense, Single Mom Planet Foundation, The HollyRod Foundation & HealtheVoices. Brooke has been featured in Everyday Health, The Phoenix Ostomy Magazine, inflammatoryboweldisease.net, Crohn’s & Colitis Effect Round Table, US Weekly, LifeScript, LA Parent, Ostomy Connection, Prevention Magazine, A Women’s Health & CCFA.org to name a few. Follow Brooke’s advocacy work on both The Crazy Creole Mommy & IBD Moms platforms on Facebook, Instagram & Twitter!

SHAWN BETHEA, ADVOCATE FOR CROHN’S DISEASE & J-POUCH SURGERY

Shawn, the creator of 2/4th, is a Black woman living with Crohn’s Disease who advocates on behalf of IBD patients for equality in healthcare. She was diagnosed with ulcerative colitis in 2009, after many years of battling the healthcare system to be heard and taken seriously. Almost 10 years, many medications, diets, therapies and surgeries later, her diagnosis changed to Crohn’s.

Shawn shares, “I never saw myself. Not in the brochures at the doctor’s office. Not on the commercials. It’s not selfish to want to identify with someone. So when asked what I would like to see change in the IBD community, the answer is simple: representation. I want to see more of myself in surveys. In brochures. I want kids (and adults) to know, THIS condition can impact Black people too.”

Follow Shawn’s advocacy work on Facebook, Instagram & Twitter under Two Fourth.

---

RESOURCES: GASTROENTEROLOGISTS

As a number of the Black patients shared in their stories, finding gastroenterologists of color has been crucial to their care in terms of mutual understanding and relatability. Below are 5 very prominent Black gastroenterologists whose goal it is to advocate for diverse groups of patients and showcase #DiversityinGI every step of the way in their care and treatment of patients:

SOPHIE BALZORA, MD, FACG is a Clinical Associate Professor of Medicine at the NYU Grossman School of Medicine and a practicing gastroenterologist at NYU Langone Health. She is the Chair of the American College of Gastroenterology’s Public Relations Committee, and also a member of ACG’s Diversity, Equity, and Inclusion Committee. She is co-founder of ACG’s #DiversityinGI social media campaign. She also serves on the Patient Education Sub-Committee of the Crohn’s and Colitis Foundation’s National Scientific Advisory Committee, and on the Foundation’s steering committee for the IBD Health Disparities in Health Maintenance Collaboration.

FOLA MAY, MD, PhD, MPhil is an Assistant Professor of Medicine at the University of California Los Angeles (UCLA), Director of Quality Improvement in Gastroenterology at UCLA Health, and a co-director of the UCLA Global Health Education Program. She completed a B.A. in Biology at Yale University, a Masters of Epidemiology at the University of Cambridge (UK), a medical degree at Harvard University, and a PhD in Health Policy and Management from the UCLA Fielding School of Public Health. She is a health services and clinical researcher with a focus in gastrointestinal health, preventive services, health care disparities, and global health.

DARRELL M. GRAY, II, MD, MPH is an associate professor of medicine in the Division of Gastroenterology, Hepatology and Nutrition (GHN) at The Ohio State University (OSU) College of Medicine. Additionally, he serves as Deputy Director of the Center for Cancer Health Equity at OSU Comprehensive Cancer Center and Medical Director of Healthy Communities for OSU Wexner Medical Center. His work leverages meaningful partnerships across public and private sectors to address health disparities among diverse populations across the state of Ohio and nationally.

He has received numerous honors for his work but Dr. Gray believes his greatest achievements are being a husband to wife, Brittney, and father to children Harper (5), Ella (3), and Noah (1). Dr. Gray is a native of Baltimore, Maryland and graduate of Morehouse College and Howard University College of Medicine. He completed his residency at Duke University Medical Center, Gastroenterology fellowship at Washington University, and public health training at the Harvard T.H. Chan School of Public Health.

ADJOA ANYANE-YEBOA, MD, MPH will soon be a faculty member in the Division of Gastroenterology at Massachusetts General Hospital. She is a recent graduate of the Commonwealth Fund Fellowship in Minority Health Policy through Harvard Medical School and Harvard TH Chan School of Public Health. She completed her gastroenterology fellowship training at the University of Chicago Medicine where she served as Chief Fellow, and her Internal Medicine residency training at the University of Illinois at Chicago where she served as Chief Resident. She received her medical degree from the University of Cincinnati. Dr. Anyane-Yeboa is passionate about advocacy and issues of health equity and care of vulnerable communities in gastroenterology, particularly in relation to inflammatory bowel disease and colorectal cancer screening.

MARIA OLIVA-HEMKER, MD is Director of the Division of Pediatric Gastroenterology, Hepatology and Nutrition and the inaugural Stermer Family Professor of Pediatric Inflammatory Bowel Disease (IBD) at the Johns Hopkins Children’s Center in Baltimore, Maryland. She is also the founding director of the Hopkins Pediatric IBD Center, which has provided multidisciplinary health care to thousands of children and teens with Crohn’s disease and ulcerative colitis.

Dr. Oliva-Hemker has authored more than 100 peer-reviewed publications, given more than 120 invited talks and is an editor-in-chief of the book “Your Child with Inflammatory Bowel Disease: A Family Guide for Caregiving,” (JHU Press, 2nd ed. 2017).  She has held leadership positions in multiple gastroenterology professional societies and has been a member of the Crohn’s and Colitis Foundation National Board of Trustees.  Dr. Oliva-Hemker is a Black and LatinX advocate for equality in healthcare and is a highly sought second-opinion clinician.

---

RESOURCES: RELEVANT ARTICLES & STUDIES FOR YOUR REFERENCE

Anyane-Yeboa A; Balzora S; Gray DM 2nd. Improving Diversity and Inclusion in GI. The American Journal of Gastroenterology. (2020)

Gray DM 2nd, Anyane-Yeboa A, Balzora S, Issaka RB, May FP. COVID-19 and the other pandemic: populations made vulnerable by systemic inequity. Nature Reviews Gastroenterology & Hepatology. (2020)

Gray DM 2nd, Joseph JJ, Olaiwola JN. Strategies for digital care of vulnerable patients in a COVID-19 world – keeping in touch. JAMA Health Forum. (2020)

May FP. From words to actions to change: How medicine, academia can respond to racial injustice. Healio Gastroenterology. (2020)

Balzora S. Breathing While Black: Exhausted and Invigorated as an African American Gastroenterologist. Gastroenterology & Endoscopy News. (2020)

Polanco Walters F; Anyan-Yeboa A; Landry A. The Not-So-Silent Killer Missing in Medical-Training Curricula: Racism. Nature Medicine. (2020)

---

…And that’s a wrap, folx! I know these have been tough times for many and if this blog post helps even one Black patient feel a little less alone and more empowered, mission accomplished. And for those of us trying to understand what the Black community faces on a daily basis, I hope this post has shed some light on the disparities, racism and hurdles many Black patients face in receiving good healthcare. So, let’s always be kind, compassionate and inclusive wherever we can be. Please spread the word and share this post. Sharing is caring!

~~LOVE, LIGHT & PEACE ALWAYS~~