Black Women And Crohn's: The Ultimate Guide For Crohn's In Our Community
It may not just be cramps, it may be Crohn's. And the sooner you know, the better.
Crohn's is not a term we often hear when discussing diseases that concern women and people of color. Yet Crohn's disease doesn't discriminate against who it impacts, or when.
In the most recent decade, the conversation surrounding Crohn's has rampantly made its rounds in various communities, as more individuals prioritize their health and normalize routine doctor visits, leading to disease detection and diagnosis.
However, let's begin at the top. For starters, what is Crohn's disease? According to the official Crohn's and Colitis Foundation, Crohn's disease is defined as a type of "inflammatory bowel disease," (IBD) and falls into the medical umbrella of gastrointestinal diseases. Crohn's is a chronic condition that affects the lining of your digestive tract, and there is no cure. Symptoms for Crohn's are often characterized as:
- Frequent, recurring diarrhea
- Rectal bleeding
- Unexplained weight loss
- Fever
- Abdominal pain and cramping
- Fatigue and a feeling of low energy
- Reduced appetite
Since its initial discovery and diagnosis back in 1932, Crohn's has always remained somewhat of a medical anomaly. Very little was known about the debilitating condition back then, and very little research was conducted at the time. It wouldn't be until nearly three-and-a-half decades later when a woman by the name of Suzanne Rosenthal, then 21 years old, would experience severe symptoms from the chronic condition (then referred to as "ileitis,"), that the disease would be taken more into medical consideration. Rosenthal would also later become the founder of the Crohn's and Colitis Foundation, with her efforts and activism yielding over 100 million in funding towards the study of Crohn's.
Thanks to the Rosenthal, who died in 2013, Crohn's research, as well treatments, now exist.
So what does this mean for women and people of color? Well, for starters, up until recently, Crohn's disease was viewed as a condition that mostly impacted Caucasians and, more specifically, those of Jewish descent. However, recent medical reports have revealed an incline in diagnoses among women and men of color.
With that said, BET recently spoke with Dr. Jennifer Christie, a board certified gastroenterologist of nearly 20 years, to help us get to the bottom of irritable bowel disease as it pertains to Crohn's, colitis and people of color.
What Exactly Causes Crohn's?
The cause of Crohn's is still unknown, but factors may include: genetic disposition, disruption in the microbiome and other environmental factors.
"As far as what causes Crohn's disease and ulcerative colitis, some of these things are still unknown, however, we know that there may be a genetic predisposition to Crohn's disease and ulcerative colitis," Dr. Christie states, when asked what exactly causes Crohn's disease.
When I disclose that my previous gastroenterologist said that Crohn's is usually a "white person's" disease, Christie swiftly comments on this, for added clarity.
"You mentioned your specialist told you that usually [the disease] is in Caucasians or in Jewish people, and that is true, in that there is a high prevalence in a genetic predisposition in patients from the Ashkenazi Jewish community. However, all races of people and genders are affected, as well," Christie states.
"We're still trying to understand the genetics. As a matter of fact, there is a large study that is being supported by the NIH (National Institute of Health) that's looking into the genetics of Crohn's disease in African-American patients, and my colleagues here at Emory are a part of that study. So, in terms of the specifics, I can't really say.
She continues, "There may also be environmental factors we're not clear about. I don't want to say pesticides; that's so generic and so cliché, too. Yes, there are certain things in food that we don't even know about, however, I hesitate to elaborate on this, because I'm really evidence-based. I'm not one of those people who just say anything — I'm very careful about that. So without knowing a little bit more, I don't want to really focus on any particulars. But clearly, if you're having a flare, try to avoid anything you think may trigger your symptoms.
"We're also learning that it may be an autoimmune problem, which means that there is some [internal] trigger that causes the body to develop inflammation, and sort of trigger this inflammatory reaction, that then causes colitis.
"It also may be some disruption in what we call the 'micro-biome,' that's the bacterial makeup or environment in our gut. There are a lot of hypotheses that we don't fully understand, as well as a number of environmental triggers that, again, we're not fully clear on yet."
Although stress and anxiety don't cause Crohn's disease, they can make your symptoms worse and may trigger flare-ups.
Crohn's vs. Colitis vs. Inflammatory Bowel Disease: What's The Difference?
Some people have Crohn's. Others have ulcerative colitis. And some have Crohn's-colitis. But are they the same? Dr. Christie explains:
"They're separate. They can happen together, but mostly, they are separate. The general umbrella term for when we're talking about Crohn's disease and ulcerative colitis is inflammatory bowel disease (IBD). That's a general term. Then under [IBD], you have Crohn's disease, and Crohn's disease can affect anywhere from the mouth to the anus. Crohn's can affect your esophagus, the stomach, the small intestine, your colon, even your skin, your eyes, or what we call extra intestinal — other symptoms and signs that are not in the gut — can occur in the setting of Crohn's. So that's Crohn's disease.
"Then there is ulcerative colitis (UC), which is truly limited to the colon, which is the large intestines. Usually with ulcerative colitis, you don't have manifestations in the stomach and all that, but you can still get skin problems; you can still get eye problems, and there can be joint problems, but ulcerative colitis is strictly in the colon.
"So again, Crohn's disease is anywhere from the mouth to the anus, where you can have this full inflammatory process going on. It's not just colitis; it is not just the colon. In terms of sequence between the two, a lot of them are similar. Oftentimes many of the medications that we use are similar for both of these diseases. However, it's important to know the difference when you make the diagnosis, and also when you're making decisions about surgery.
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The Prevalence & Severity of Crohn's Among Black Women – What's Really Going On?
"I think we (the medical community) are recognizing it more in Black women, and in women in general. In terms of the prevalence, it's not necessarily more common in African-American patients, but certainly when we do get it, we tend to be sicker, and we're still trying to understand why that is the case, and it could be several things," Dr. Christie explains when asked why so many more women of color appear to now have the chronic gastric condition.
"It could be that we were diagnosed later. Maybe we're not responding to the medicines the same as, say, our Caucasian brothers and sisters do. Are we taking our medicine? Do we understand the disease, do we understand the importance of the disease? Do we have trust in our healthcare providers to be able to do what you're supposed to do [once diagnosed]? You know, that's a real issue.
"The other thing is, diagnosing it later, because either we go to the doctor [late], or our symptoms are sort of discounted more. I'm not suggesting that they are, but it could be several reasons.
"So I don't know if there are 'more' women being diagnosed, but I do know that when diagnosed, it tends to be more severe."
It's not necessarily that Crohn's disease is on the rise so much as the actual diagnosis of Crohn's is.
Limited Access to Healthcare May Also Be Detrimental To Those Diagnosed With Crohn's
While on the topic of healthcare, Dr. Christie explains how our experiences with Crohn's may vary based on our access to medical care, or lack thereof.
"In some lower income communities, there is a lack of access to care, so that's something we have to consider as well. For many of us, we don't have that access to care, or access to medicine that helps fight this, or even medical tests to help determine what's going on with you. So I think access to care may also be a limitation for many people.
"For many of our people, education about healthcare and trying to make sure you have coverage to be able to access the healthcare that you need is not a part of their experience. Neither is looking out for certain signs and symptoms — it's a very complicated issue. So that's something that we have to consider as well."
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Foods, Alcohol and Drug Consumption – How It Impacts Your IBD
When asked if there are any particular foods to avoid in order to steer clear of a flare-up from Crohn's, Dr. Christie gives a couple of dietary do's and don'ts.
"People will speculate about what certain foods to eat, and what certain foods to avoid, but there really is no particular diet or trigger that is consistent among all patients with inflammatory bowel disease," Dr. Christie explains.
The veteran specialist continues, "However, in terms of other things, we know smoking is something that can trigger Crohn's or make it worse if you have Crohn's. Patients who have active Crohn's disease, we really want to emphasize a low-fiber or low-residue diet to avoid making symptoms worse.
"So overall, eat low-fat foods, avoid smoking and engage in moderate to no alcohol use if you're having a problem with your Crohn's disease. Those are some of the major things that come off the top of my head."
Intimacy and IBD: Black Patients Tend to Have More Perianal Diseases
Since the median age for Crohn's diagnoses among Black women is 28, we asked Dr. Christie how, if at all, the disease may impose on, and impact, one's intimate life.
"The other thing that is known is that Black patients tend to have more perianal diseases. So those are diseases that are in the setting of Crohn's disease and involve inflammation, abscesses or infection around the anus, which can be extremely painful. It can affect your ability to eliminate your urination, bowel movements and then, of course, your sexual activity, all of which can affect your self-confidence and quality of life.
"Since [perianal diseases] affect sort of more your genital and urinary area, it becomes even more complicated and difficult to manage, quite honestly. People don't want to talk about it [since] they are embarrassed because it's such a personal area. Many people delay help even more because [the affected] area is very private and very personal, so they just try to figure it out themselves, hoping and praying that it'll go away.
"This can be a significant, negative impact on a woman's quality of life and just overall sense of well-being."
"Many delay help because [the affected] area is very private. They're embarrassed because it's such a personal area."
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Why Crohn's Is Such a Complex Condition to Manage And Find A Cure For
As the saying goes: In order to know where you're going, you must know where you came from. Unfortunately, Crohn's is a difficult disease to control, primarily because it doesn't appear to discriminate based on gender, race or age. Even further, no one knows where it started, or how it starts.
"There has not been a specific trigger that has been tied to the development of inflammatory bowel disease or Crohn's disease, if you will," Dr. Christie states.
She adds, "It's not like patients have been exposed to something and then they get Crohn's, or that there's a clear trigger. Also because it happens in babies and children, or it may not happen until adulthood. So you figure, why does it happen at different age groups and in different populations of people who are from different backgrounds, who maybe have not had the same exposure to medication or smoking, or alcohol, all of those things.
"Then, when you look into the biology of it, it's so complicated in terms of the whole inflammation process, and there's so many things that play a role, that again, it's just hard to isolate [the problem]. Like, 'This is the trigger here that happened in that person's body that set off this whole cascade of events that then caused this process,' because it's different in [different] people."
Colostomy Bags and Crohn's – You Can Still Be Fab In Your Bag
According to the Center of Disease Control, only 1.3% of Americans in the U.S. reported having Crohn's in 2015. However, approximately 23 to 45 percent of people with ulcerative colitis and up to 75 percent of people with Crohn's disease will eventually require surgery.
A common surgery performed on Crohn's patients is a colostomy. A colostomy refers to an opening in the large intestine, or the surgical procedure that creates one. The opening is formed by drawing the healthy end of the colon through an incision in the anterior abdominal wall and suturing it into place. Surgeons divert one end of the large intestine into a visible opening — known as a stoma — on the patient's abdomen.
Life post-op for Crohn's patients may require long-term use of a colostomy (or ostomy) bag. A colostomy bag is a small pouch placed over the stoma to collect waste products that would normally pass through a person's rectum and anus in the bathroom.
Dr. Christie addresses the most common concern for those who have reached the stage of surgery in their illness.
"Having an ostomy bag is a whole other thing. We're talking about [carrying around] stool or feces. That's not necessarily something that people want to talk about or have to worry about. I talk about it all the time as a gastroenterologist, but I understand as a layperson, it's very private. Then when you have diarrhea and you can't control it, or you have a bag and you're trying to have intimacy with someone, that's not as private, either," Christie begins.
Dr. Christie then details a number of alternative options to make the transition to an ostomy bag a bit easier for the patient, including exploring various types of bags as well as opening the lines of communication regarding your condition."There are ways to manage that now. With different types of bags, and different devices to cover it, and just being open, too. But that's the other thing, opening that line of communication and talking about it with your friends, or with your partners, so that you can feel more comfortable with your body."
BETTER MEDICINES KNOWN AS 'BIOLOGICS' ARE NOW Available FOR CROHN'S (Here are a few!)
While Crohn's may appear to be a dismal topic of discussion (and an even more dismal disease to live with), there is hope.
"As far as medicines that are available for patients with Crohn's disease and ulcerative colitis, there are medicines called 'biologics.' An example of that is Infliximab. The other trade name for that is called Remicade," Dr. Christie says.
She continues, "There is also Adalimumab, which, if you look that up, Humira is the company name for it. Then there are several others that are being developed, like Stelara. They're all what we call 'biologic' class. First of all, these medications are all very strong, and they're usually given either through IV infusion or they can be given under the skin with a small needle, and patients can inject it into their muscle at home.
"What they do helps to suppress or quiet down that inflammatory-related pain. They help to work on different types of cells and the various chemicals in the body that trigger that inflammation process that is causing your symptoms of pain, diarrhea and bleeding.
"These medicines, while they're very expensive, can be very effective in managing and treating patients who have an acute flare of their colitis, and then keeping them sort of in remission, or in keeping them quiet and without symptoms. So those medicines, I would say in the last few years, are evolving therapies that are getting better and better."
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About Dr. Jennifer Christie:
Dr. Jennifer Christie is a board certified Gastroenterologist, who has been practicing gastroenterology since 2001. Dr. Christie was initially on the faculty at the Mount Sinai School of Medicine from about 2001 until 2007, before moving to Atlanta and joining the faculty at the Emory School of Medicine, where she has since remained. Currently, she takes care of patients with a range of digestive issues, including those who have Crohn's Disease and Ulcerative Colitis. Dr. Christie also takes care of patients with Irritable Bowel Syndrome, and problems with constipation, diarrhea, celiac disease, reflux, swallowing problems, and more.
Dr. Christie's particular focus within Gastroenterology is as it relates to problems in how the intestines in the stomach move, or Motility Disorders.
Dr. Christie also oversees a team of medical students and residents, who research various areas within Gastroenterology, and also helps lead the Gastrointestinal (GI) team at Emory."I love what I do. I feel very blessed to be able to do what I do and be in a position to help people in so many ways." - Dr. Jennifer Christie