One day in 2003, she had just gotten home from working out and was sore, but didn’t pay much attention to the new pain until a few days later when it got worse. At a dermatologist appointment for an unrelated issue, Castrillon asked the doctor to take a look at the site of the pain. The dermatologist said she had a cyst and attempted to drain it in the clinic. It was, in fact, a perianal fistula, a small tunnel that develops between the end of the bowel and the skin near the anus. Fistulas most commonly happen as complications of things like hemorrhoids or fissures, but can also be a sign of Crohn’s. “I called my family crying,” Castrillon remembers. “It was traumatic. I was alone and I couldn’t move.” After the procedure, the dermatologist told her it wasn’t a cyst and recommended Castrillon see a colorectal surgeon. She found one in Los Angeles where she was living at the time. When Castrillon finally managed to get an appointment with the colorectal surgeon, her fistula had become infected and was severely impacting her daily life. She was in constant pain, and her wound didn’t heal, which made social situations difficult. She avoided spending time with anyone she didn’t know very well. She said no to any opportunity to go on a date or even meet someone new. She was used to going to happy hours and socializing with colleagues, but the prospect of being away from a bathroom hampered those plans. “I hid it as much as I could or avoided spending time with people if it meant having to sit for long periods of time or having to change the gauze I was wearing,” she says. The colorectal surgeon decided antibiotics would be the best course of treatment but didn’t give her a diagnosis beyond the fistula. He didn’t explore the possibility that she had Crohn’s. “I have so many regrets from my early years of Crohn’s because I am so knowledgeable now. Back then, I was just going along with what the doctors were telling me,” she says. “I had no idea if they were right or wrong.”
Years of Pain and Misdiagnoses
The antibiotics did not clear up the fistulas, and they actually made Castrillon sick. Her doctor scheduled a surgery called a fistulotomy for October 23, 2003, and told her he would clear out the fistula, which would allow it to drain and heal on its own. The experience is an ongoing source of trauma. “To this day, every October 23 it still comes to mind,” says Castrillon. Misdiagnoses and incorrect treatments aren’t uncommon among Hispanic IBD patients in the United States. According to a journal article published in July 2022 in Inflammatory Bowel Diseases, compared with white patients, Hispanic patients with IBD go longer without a diagnosis and are often misdiagnosed. Although the disease is still most common among white people, that’s changing, and more cases of IBD are being diagnosed in Hispanic Americans today than were in previous generations, according to a study published in January 2021 in the International Journal of Colorectal Disease. The July 2022 article highlighted the differences in how IBD presents in nonwhite patients compared with white patients. Specifically, Hispanic Americans have higher rates of perianal presentations of Crohn’s, including fistulas, than other groups. When the first surgery didn’t work, and her fistulas didn’t heal, Castrillon went back to her surgeon and asked him what was happening to her. The doctor’s response was to try antibiotics again, which she had an allergic reaction to, and he scheduled another fistulotomy. Castrillon and her mom had booked a trip to Europe for a wedding before she could get in for surgery. “Half of our luggage was gauze and pads to deal with this fistula,” she says. After the second surgery, in 2004, her fistula drained but never fully healed, so she learned to live with it — for years. “I wasn’t comfortable, I never felt great or like I was back to normal,” she remembers. But after she had surgery in 2008 for uterine fibroids, her fistula pain became unbearable again. This time it radiated down her right leg. She went back to the surgeon. “He washed his hands of me. He told me that he didn’t know what to do with me, that I should see an infectious-disease specialist or another colorectal surgeon,” she says, remembering how he wrote the name of another surgeon on a piece of paper and handed it to her. It struck her that he didn’t offer to make the call and explain her situation to the other doctor in medical terms, to see if he would be able to help her. “I remember sitting in the doctor’s office crying and yelling at him that he wasn’t helping me. I came here for help and he didn’t want anything to do with me,” she says. Looking back, it also hurts that he didn’t suspect IBD at any point during the years she was seeing him. She didn’t know anything about IBD before she was diagnosed, but understands now, after living with the disease, that her warning signs pointed to the possibility of Crohn’s. “I never should have had those surgeries. I should have been on medication,” Castrillon says.
After 5 Years of Symptoms, a Diagnosis
Castrillon says she is grateful for the colorectal surgeon who immediately suspected she had Crohn’s disease and did a biopsy to make sure. When the results came back positive for Crohn’s, Castrillon finally started getting the treatment she needed. The gastroenterologist first prescribed her mercaptopurine (6-MP), a chemo drug that is used to treat Crohn’s. But her body didn’t metabolize it well, so her doctor began to talk about biologics. “By that time I had learned that biologics were the way to go with fistulas, but being new to IBD, I was afraid to jump into biologics right away,” she remembers. “I began to understand the medication pyramid, and moving from the bottom up, I realized biologics were the strongest medications that were available, so that made me wary, knowing I’d be on something strong, and for the rest of my life.” A study published in May 2022 in the journal Clinical Gastroenterology and Hepatology highlighted the ways a person’s race or ethnicity may affect their response to different treatments. The researchers compared 240 Hispanic patients who were treated with biologics for IBD with 960 non-Hispanic patients who had the disease and who were also on biologics. They found that within a year of using biologics, Hispanic patients were more likely to be hospitalized, have IBD-related surgery, and were at a higher risk for serious infections. The research team noted that future studies should explore the environmental, social, and biological factors that could be at work.
Culture Affects How People Talk About Disease
Castrillon started on injection biologics and finally found relief. But she was still grappling with how much about her disease she could share. Her immediate family knew what was going on, but she kept her diagnosis from her extended family in Peru. There were times when she was hospitalized or having surgeries and they would ask her how she was. She would lie and tell them everything was fine. It was a unique cultural experience not everyone with IBD faces, she explains. “It’s not that we necessarily want to hide this diagnosis, it’s the cultural perception that I am hiding something more, like cancer, that I’m on my deathbed,” Castrillon says, explaining that in Peruvian culture, people often think an illness is more serious than a person is letting on, or that they’re hiding something bigger or more severe. And because it wasn’t discussed, she was never able to understand whether or not she had a family history of the disease. After years of hiding her diagnosis, Castrillon finally shared it with her extended family in 2020, after her father, who was living in Peru, passed away. She learned that she had a cousin who also had Crohn’s. After learning about Castrillon’s symptoms, one of her second cousins revealed that she thought she might have IBD, too. “Now there is so much more information compared to 2003. If my mom had told my family I had fistulas back then, that would be the end of the world, but they understand today and are really supportive,” she says, explaining that because of cultural norms, her family would have assumed the fistulas were actually something perceived to be much more serious than IBD, even something fatal.
Food Guidelines for IBD Aren’t Culturally Sensitive
People who do not eat a standard Western diet can have a hard time feeling represented in lists of IBD-friendly foods, and Castrillon experienced this firsthand. When she was learning about what to eat during a flare-up, she saw very few guidelines that took into account a non-American diet. During a flare, she was instructed to eat things like nut butters or powdered protein shakes. “When I would get guidance on what to eat during a flare I’d think, ‘That’s not something I would normally eat, how is that appetizing during a flare?’” she says. Many of the foods she was told to avoid even when she wasn’t having a flare weren’t part of her diet in the first place — things like hamburgers, hot dogs, chips, ice cream, and candy. People also assumed that because she’s Hispanic, she ate spicy food, which can be a trigger. “I personally don’t like spicy food, and in Peru, we eat very mild spiciness. So there’s a preconceived assumption that I’m eating spicy food and triggering a flare when it couldn’t be further from reality,” she says. She also rarely found herself represented in images of IBD patients, which until a couple of years ago were overwhelmingly white. She also can’t recall ever hearing from Hispanic doctors or Hispanic patients at the conferences she’s been to. “I’ve identified with IBD patients in the fact that we have the disease, but there still isn’t that sameness of a fellow patient being Hispanic and having IBD,” Castrillon says. “I still haven’t found that, and there are a lot of things you learn to figure out on your own.”
Creating Community
Through her volunteer work with the Crohn’s & Colitis Foundation, Castrillon recently found herself at the forefront of founding a Hispanic-focused IBD community. In July, the organization created two new private Facebook community groups, one exclusively for Black patients living with IBD and one for Hispanic patients. As one of the moderators for the Crohn’s & Colitis Foundation Hispanic Community Group, Castrillon is excited to help create the resources she wished she had back in 2003, when her symptoms started. “It will be a way to have those conversations about language and culture, or how we tell our family — things that are so unique to us,” she says. “There is a lot of opportunity to give the guidance and advice that I wish I had 20 years ago.” She also hopes it will help spread awareness among Hispanic patients about the importance of diversity in clinical trials and participating in research so doctors will have more answers as to how IBD may affect Hispanic Americans differently. “Despite how much awareness has grown, we still need more,” she says.
