March 24, 2023 – Joshua Denton was diagnosed with ulcerative colitis as a junior in college. Not only was he concerned about a new health diagnosis, but how it might change the rest of his life.
His initial fear was “having something that is technically considered incurable”. Next came the daily challenges of living with Inflammatory Bowel Disease (IBD).
“There’s just a level of concern about what your quality of life is going to be like. Will it ever be like that again, will it get better or worse over time?” said Denton, now a 37-year-old aerospace project manager in Dallas.
People with IBD report higher rates of anxiety, depression and other life problems compared to 6 years ago, according to an American Gastroenterological Association (AGA) survey of more than 1,000 people.
At the same time, many healthcare providers believe patients’ mental health needs are being met, according to an accompanying survey of more than 100 healthcare professionals who treat Crohn’s disease and ulcerative colitis.
So why the inequality? People with IBD are sometimes reluctant to talk to their doctor about relationship issues or difficulties at work, saying they don’t want to be a burden, said Laurie A. Keefer, PhD, a psychologist and professor of medicine at the Icahn School of Medicine at Mount Sinai in New York City, specializing in helping people with IBD develop coping skills and resilience.
Doctors sometimes don’t want to ask questions that might be inappropriate or make people feel uncomfortable. “There’s a lot of good intentions on both sides,” Keefer said. “But I think there’s a real disconnect, which actually needs to happen.”
Survey results showed that 36% of people with IBD report anxiety and 35% report depression. This reflects a steady increase in anxiety and depression diagnoses since 2017 The national anxiety rate is 19% and for depression, 8%, according to a 2017 report by the National Alliance on Mental Illness.
what is the connection
There are likely two reasons that explain why anxiety and depression are more common in people with IBD, Keefer said. It is increasingly recognized that these conditions share inflammatory pathways with autoimmune diseases, particularly pathways associated with the brain and gut.
“The second problem is that these conditions themselves cause depression because there’s so much to deal with,” she added. “You don’t feel good when you stop going out and doing things, and for some people that really just manifests as depression.”
The risk of depression can also increase when someone’s IBD is active. Keefer said, “When you’re sick and you’re in bed and you’re not at work and you don’t see your friends, you get more and more depressed.”
The survey also reveals the impact IBD can have beyond mental well-being — including challenges in relationships, in the workplace, and in educating others about the conditions. AGA used the results as the basis for a new resource called My IBD Life.
“The idea is to really simplify the conversation about the emotional toll of IBD,” Keefer said. My IBD Life features real people with IBD sharing tips on how to talk to friends and family about these challenges, how to manage their work-life balance, and how to travel. “Many of my patients don’t take vacations that require them to fly by plane.”
The campaign also focuses on helping younger people, as IBD is generally diagnosed when people are in their teens or early 20s. “The mental health needs of young adults are high and they are increasing post-COVID,” Keefer said. “These are also people who are trying to get their lives together and then the disease sweeps over them.”
Unpredictability increases fear
Kamila guides was diagnosed at the age of 12 and has had Crohn’s disease for more than 20 years. She shared some challenges beyond the IBD itself.
“Relationships are always important — try to figure out when you’re having that conversation with Crohn’s,” she said. It can be especially difficult for people who have had their colon removed and are living with a colostomy bag. “How do you talk to someone about this in a relationship or even before sex?”
Joint errands can also induce anxiety, Denton said. “There are things that people with normally functioning bodies take for granted. I have to think, “Hey, can I go to the store and buy groceries without worrying about going to the bathroom or having an accident?” ‘Can I go on a date and eat and drink comfortably – and not eat anything that’s going to trigger a flare-up?’”
There can be issues with friends and family who don’t understand the urgency of always being near a bathroom, said Guiden, a digital marketing expert at JPA Health, a public relations and marketing agency that has helped develop it the My IBD Life campaign.
Keefer, who is also an advisor to the campaign, said that “a lot of GI disorders, not just Crohn’s disease and ulcerative colitis, come with a lot of unpredictability that can increase anxiety.” Uncertainty is what separates IBD from many other chronic conditions.
What do you need a break for?
Employers cannot understand the need for time off. People with IBD may be reluctant to ask for time off from the office to avoid being seen as unable to work. For Guiden, it was college professors who were unwilling to forego her absence if she missed class because of her IBD.
“Communication is very important to having a chronic illness and getting the housing you need. Also, don’t be afraid to escalate if necessary,” Guiden said.
The campaign also aims to help providers take a more active role in fighting IBD beyond the physical symptoms. Many providers in the survey said they felt less able to treat the emotional issues than the physical aspects of IBD.
education and awareness
“The subject can be very uncomfortable for a lot of people, including myself at times, admittedly, and it leads to a kind of self-censorship,” Denton said. He’s trying to figure out how much his conversation partner wants to know about his personal IBD challenges.
At the same time, he added, “Anyone you meet who doesn’t know about IBD is an opportunity to educate.”
This is another way the My IBD Life website can help. If someone is uncomfortable discussing the details or IBD, those affected can refer others to this resource. That way, Denton said, people can take their time and learn as much as they want about living with Crohn’s disease or ulcerative colitis. The personal stories shared on the site really “humanize” IBD.
Keefer agreed. “The campaign really breaks down patients’ common emotional concerns and offers them real tips and tricks based on real patients and providers. It’s a very evidence-based guide, but also very practical, tangible information for patients.”
The patient survey, with responses from 1,026 people aged 18 to 59 years with IBD, was conducted from June 27 to July 5, 2022. The provider survey, with responses from 117 gastroenterologists, was conducted at the same time.
IBD and inequality
The survey also found that different communities may experience the challenges of IBD in different ways. For example, one question asked respondents to rate my experience on a scale of 0 to 10, with 0 representing “not applicable” and 10 representing “very good,” the following: “My IBD journey was enhanced by my race , ethnicity and culture influences , sexual orientation, gender identity and/or age.”
The average rating of all 1,026 respondents was 3.57. However, People of Color gave this statement a 4.5 and Black patients gave it a 4.7.
“I will not attempt to speak for those behind the survey, but I will speak through the lens of myself, who is an IBD patient and also part of a non-profit organization Color of Crohn’s and Colitis Foundationa nonprofit organization focused on improving medical access and equitable resource-based treatment for black and brown IDB patients,” said Denton.
“Unfortunately, it’s rooted in a bit of systemic discrimination,” referring to the historical treatment of black and brown patients, he added. Topics include equal access to care and treatment, and participation in clinical trials that are more representative of the United States population. “Certain things have very little to do with who we are as actual individuals and have a lot more to do with the structure of the medical environment.”