Editor's Note: This story is part of a new series on HealthCentral called "Get Your Ph.D.!", which is geared toward people who've got the basics of their condition down and want to up their expertise. Who's ready to go pro?!
Getting diagnosed with Crohn's disease at age 16 was the last thing Cristina Tarankow expected or wanted. "It was all very difficult as a teenager—throwing up, losing weight—and I thought at first it was probably an eating disorder," says the now 29-year-old Tarankow, who lives in Los Angeles.
Instead, she learned her immune system was attacking her GI tract, and it was something she'd live with for the rest of her life. That wasn't easy to deal with then, and after 13 years of navigating Crohn’s (including medication changes, procedures, and more than a dozen surgeries), it’s still isn't. While the challenges and repeated cycles of IBD symptoms and disease are of course physically demanding, they've also taken their toll on Tarankow's mental health, fueling an undercurrent of anxiety and depression.
Think that's unusual? Far from it. In fact, mental disorders occur two to three times more often in IBD patients. ”When my Crohn's symptoms and treatment are on cruise control, my anxiety and depression are generally manageable, but it never really goes away and certain things trigger flares in anxiety and depression just as certain things trigger an IBD flare.”
The connection between depression and Crohn's is particularly troublesome because the autoimmune condition typically manifests in patients' lives when they're psychologically vulnerable, usually in their teens and 20s, says David A. Schwartz, M.D., head of Vanderbilt University's Inflammatory Bowel Disease Center in Nashville, TN.
"These patients are trying to become productive, to launch into the world, then their bodies betray them, and they have no control," he says. "Those things can lead to social isolation and then depression. We have to address the mental health side of things for a patient to get completely well." And we have to continue addressing it for them to stay completely well.
While there is an increasing awareness in the medical community of this mind-gut connection, “much more so than even five-to-ten years ago,” says Dr. Schwartz, there aren’t any standard routine screening guidelines for doctors (or patients) to follow so they can identify and then treat those who are struggling with mental illness on top of their Crohn’s.
“Unless it is addressed early, there are likely unhealthy behaviors that develop to help the patient cope,” says Dr. Schwartz. “This can lead to a lot of unnecessary suffering by making symptoms much worse and the disease much more difficult to treat.”
What the Research Says
Depression rates among Crohn's patients do appear to be higher, says Lawrence S. Gaines, Ph.D., a clinical psychologist and associate professor at Vanderbilt University. By studying his—and others’—data, he has found that depression not only negatively affects patients’ quality of life (a given), it also plays a part with increased intestinal inflammation and it can interfere with patients’ ability to follow treatment recommendations, intentionally or not. Here’s what recent studies have found:
- The mind-gut connection is strong. In Gaines’ study published in the American Journal of Gastroenterology, his team found that affective-cognitive symptoms (a.k.a. mood swings) were significantly associated with a risk of exacerbation or worsening of Crohn's, often resulting in hospitalization.
Depression leads to more frequent Crohn’s flares. Gaines’ second study published in Inflammatory Bowel Disease, involved more than 3,300 participants and supported the first finding—depression really did cause patients to report more Crohn's disease activity.
IBD symptoms are more intense when anxiety and depression are involved. A separate 2018 study at Pennsylvania State College of Medicine looked at 432 people with IBD and found that 44% had anxiety or depression or both. Researchers found that the IBD patients with anxiety and depression use more medical services (i.e. the emergency room and imaging studies), report more severe symptoms than other IBD patients, and show more inflammation in the digestive tract when examined via endoscopy.
Some depressive disorders may be influenced by the gut microbiome. A study of almost 6 million patients, published in the journal Gastroenterology provided more evidence of a significant relationship between depression and the development of GI inflammation, specifically IBD. The influence of mood disorders in IBD highlights a potential role of brain-gut interactions and inflammation, the authors say. Depression is also a pro-inflammatory disorder, meaning it can encourage inflammation, and it might be influenced by the gut microbiome, the huge microbe population in our intestines.
- GI inflammation may directly affect the central nervous system. Adding more meaning to "I'm going with my gut," John Hopkins Medicine reports that irritation in the GI system could send signals to the brain that cause changes in mood.
What does this all mean if you feel like you’ve been teeter-tottering on IBD with depression for many, many years? “It is very cyclical and can be an endless feedback loop unless we intervene both from a disease activity, mental health, and nutritional standpoint; hence the importance of multi-disciplinary care,” says Dr. Schwartz.
Take Charge of You
An effective IBD treatment plan looks at the whole person, says Tarankow who has been utilizing resources for anxiety and depression since her diagnosis. Here’s what Tarankow does—and you can, too—to make sure she’s caring for her gut and mental health holistically.
Keep track. If you’ve been living with Crohn’s for a while but still can’t seem to shake feelings of negativity about yourself or your future, start tracking your moods, Gaines says. Try an app like Daylio to journal your attitude over time. After a while you may be able to identify some of the thinking patterns that may be creating psychological barriers to fully adapting to the demands of life with Crohn’s. "That could then influence how you self-manage your disease, influence the immune system, and ultimately influence how your disease progresses," says Gaines.
Ask for pro help. You may think you should have this whole Crohn’s situation down by now, but if you don’t, you don’t. And that’s ok. What matters is taking the steps now to get to a healthier place mentally and physically. “My best piece of advice is to build a support team and lean in when you feel like things are going astray,” says Tarankow.
If you're feeling negative or down, especially for an extended period, talk to a physician, says Dr. Schwartz. Maybe you're not sleeping well, you've become less social and more isolated, you're eating less, or you're worried about pain that "might happen" in the future. Your personal life starts to suffer, and maybe also your self-worth. All those things can contribute to anxiety and depression, which are both treatable.
“Sometimes we don't see it ourselves, so be open to your trusted core of support if they notice habits or behaviors that we don't recognize with our blinders on,” says Tarankow.
Find your tribe. Non-medical support is also critical to staying the course, and it's really not too hard to discover. "Find the right resources and work with them," Tarankow says. She's a board member of the Los Angeles-based IBD Support Foundation, which led her to meet her best friend, Keagan, her "soul sister" who's also the same age. Tarankow's BFF lives 30 minutes away, but the two text emojis—a girl between two lightning bolts—when they need an inspiring virtual hug.
They vent when they're sick, frustrated, or sad. "We look at the world through the same lens," says Tarankow. "Having someone 'who gets you' is so important, and so is developing those meaningful relationships."
Tarankow also recommends the Crohn's & Colitis Foundation, and the United Ostomy Associations of America, if you have an ostomy—an opening created by surgery, for waste to leave the body—like she does.
Treat yourself. Take time to listen to music that soothes or lifts your spirits, read, or journal your thoughts. Find comedy programming—shows or video clips— because laughter is the best medicine, and it's free! Enjoy aromatherapy, meditate, or find a safe place—like a dark, quiet room—to go to when you feel anxiety and depressive tendencies arise. If you're tense, go to your parked car, crank up those favorite tunes, sing along to the music and let some steam off safely.
For individual patients like Tarankow, Dr. Schwartz emphasizes five key things that could help modulate the effect of depression and anxiety on Crohn’s. “I would encourage them to make sure they are getting enough sleep, find ways to manage stress (meditation, exercise, etc), enrich relationships, get adequate nutrition, and exercise.”
“Every day I face challenges that could spike my anxiety and depression,” says Tarankow. “Some days it hits hard and others I’m able to find ways to cope.” Simply put: Getting to a good place with an IBD and mental illness is not a sprint, it’s a marathon.