In her nine years as a nurse, Headrick, now 34, had often fielded questions from patients who had inflammatory bowel disease (IBD). She’d get calls from people who were experiencing flare-ups at the worst times, like one woman who was on her honeymoon and wondering if she should go to the emergency room. “I remember hanging up the phone and thinking, ‘I can’t imagine what this is like. I couldn’t go through this,’” Headrick says. Six months after that call, Headrick noticed that she was losing weight and experiencing rectal bleeding, but she dismissed it as an effect of overexercise, since she had recently gotten into cycling. When she experienced abdominal cramping, she figured it was just period cramps. It was October 2018, and Headrick had moved to Washington, DC, from Oklahoma for graduate school, and was balancing school and a full-time job at the hospital. She was busy, to say the least, but a few weeks after her symptoms started, Headrick noticed she was bleeding — a lot. “I went full blast, from feeling well to thinking, ‘Something is up,’” she remembers. Headrick was crying when she asked a fellow nurse at the hospital if she would examine her and give her opinion on what she found. After reviewing Headrick’s symptoms, the nurse referred her to a colorectal surgeon for testing. “Even as a healthcare professional, I found it hard to talk about intimate things like my symptoms,” she says. With the doctor’s guidance, Headrick scheduled her first-ever colonoscopy. The screening showed some inflammation, but nothing that resembled Crohn’s disease or ulcerative colitis. Still, she knew something was wrong when she was still experiencing pain and bleeding the week after the colonoscopy. Headrick pushed for an MRI, which she got. “With that, it was very clear that I had a complex fistula and swelling in the rectum,” she says. According to the Crohn’s and Colitis Foundation, fistulas are a complication of Crohn’s disease, which Headrick was diagnosed with after her MRI. Inflammation causes fistulas, or connections, to develop between two organs that aren’t normally connected, and they occur most commonly in the anus, bladder, vagina, or skin. “It was frightening to me, because I knew that I knew too much, having been on the care team part of it,” she says. Headrick remembered all the patients with IBD she had cared for, and she knew the best thing she could do was build a care team of her own to help her navigate treatment options that could ease her symptoms. At first, Headrick didn’t want to be on biologics, medications that target specific proteins in the body that cause inflammation to keep IBD flares under control. She wanted to first try managing her disease with antibiotics, rest, and changes to her diet. She put graduate school on hold and took time off, but her condition didn’t improve. Headrick ended up having a difficult conversation with her gastroenterologist about starting biologics.
Weighing Treatment Options
Looking forward, Headrick wonders if she’ll be able to stay on her medication if she gets pregnant, or even if she’ll be healthy enough to be a parent — whether by birth or adoption. “It seems like Crohn’s and colitis comes at the most inconvenient times in life, and it’s a tough disease to start with because it’s always a battle of the unknown,” Headrick says. A study published in March 2021 in the journal Gastroenterology, which included nearly 1,500 pregnant women with IBD, found that exposure to biologics did not increase a baby’s risk of birth defects, miscarriage, preterm birth, low birth weight, or infections during the first year of life. But mothers who had higher disease activity, meaning more severe and more frequent flare-ups, had a higher risk of miscarriage. Headrick first tried a type of biologic therapy that she injected herself at home. She had regular lab work done, and the drug “worked beautifully for about eight months,” Headrick says. Then her body started producing antibodies to the drug, meaning it no longer worked to keep her Crohn’s flare-ups at bay. Her care team started her on another biologic. That one worked for nine months, but Headrick’s body eventually produced antibodies to that drug, too. “I blew through two of one category of the medications, and this is pretty common for people to do,” she explains. “We try not to say fail, but sometimes that’s what happens. Your body will not receive the medication and do what the scientists who developed it expect it to do” It’s not uncommon for people with IBD to develop antibodies to drugs like biologics. In a review published in January 2018 in the journal Therapeutic Advances in Gastroenterology, researchers found that patients on biologics had a significant range of experiences, even with the same drug. They estimated that between 1 percent and over 25 percent of people who take biologics for IBD develop antibodies to at least one drug.
Finding Your Community
Four years after starting biologics, Headrick still receives infusions every eight weeks, and is grateful the drugs are still working. Even on bad days, Headrick no longer has to call in to work or cancel dinner plans. “That trial of medications, feeling great, and then the lows of it not working and all the flares that come along with it, it’s really disappointing and can really leave you in a bad place,” she says. “But I always tell people, be willing to communicate this with your doctor and try something new.” Headrick emphasizes the importance of taking care of yourself on the good days, to make them last, and to seek out support. A great place to start is online communities like the Crohn’s and Colitis Foundation and Color of Crohn’s & Chronic Illness (COCCI), a space for people in the BIPOC (Black, Indigenous, and People of Color) communities who are living with IBD. “Every person who gets diagnosed, including myself, goes through a moment where they feel they are isolated, that they’re the only person going through this,” she says. “That couldn’t be farther from the truth.”
