Anxiety, depression, climbing among people with IBD

March 24, 2023 – Joshua Denton was diagnosed with ulcerative colitis when he was a junior in college. Not only was she dealing with the anxiety of a new medical diagnosis, but also how it might change the rest of her life.

His initial concern was that it was “something that is technically considered incurable.” Then came the daily challenges of living with inflammatory bowel disease (IBD).

“There is only a certain level of concern about what his quality of life will be like. Will it ever be the same, will it get better, or will it just get worse over time?” said Denton, now a 37-year-old aviation project manager in Dallas.

According to a survey of more than 1,000 people by the American Gastroenterological Association (AGA), people with IBD report higher rates of anxiety, depression and other life challenges than 6 years ago.

However, many health care providers believe they are meeting patients’ mental health needs, according to a survey of more than 100 health care professionals who treat Crohn’s disease and ulcerative colitis.

So why the inequality? People with IBD are sometimes reluctant to discuss relationship problems or work difficulties with their doctors, saying they don’t want to be a burden, said Laurie A. Keefer, PhD, a psychologist and professor at the Icahn School of Medicine. of Mount Sinai Medicine in New York, who specializes in helping people with IBD develop coping skills and resilience.

Doctors sometimes don’t want to ask questions that are 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 in what needs to happen.”

According to the survey results, 36% of people with IBD reported anxiety and 35% depression. This reflects a steady increase in anxiety and depression diagnoses since 2017. In comparison, a the national rate of anxiety is 19% and 8% for depression, according to the 2017 report of the National Association of Mental Illnesses.

What is the relationship?

There are probably two reasons why anxiety and depression are more common in people with IBD, Keefer said. These conditions are increasingly known to share inflammatory pathways with autoimmune diseases, particularly pathways associated with the brain-gut system.

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“The second problem is that these conditions themselves cause depression because there is so much to deal with,” he added. “You don’t feel good when you stop going out and doing activities, and that really just manifests as depression for some people.”

The risk of depression may also increase if someone has active IBD. Keefer said, “When you’re sick and you’re in bed and you’re not working and you’re not seeing your friends, you become more and more depressed.”

The survey also explores the impact IBD can have beyond mental well-being – including challenges in relationships, the workplace and educating others about the condition. AGA used the results as the basis for a new resource called IBD is my life.

“The idea is to really simplify the conversation about the emotional burden of IBD,” Keefer said. In My IBD Life, real people with IBD share tips on how to talk to friends and family about these challenges, how to manage work-life balance, and how to travel. “A lot of my patients don’t go on vacations where they have to fly on an airplane.”

The campaign also focuses on helping younger people, as IBD is usually diagnosed in their teens or early twenties. “The mental health needs of young adults are high and will continue to increase post-COVID,” Keefer said. “These are also people who are trying to get their lives under control and then the disease catches them.”

Unpredictability increases anxiety

Kamilah Guiden She was diagnosed at age 12 and has had Crohn’s disease for over 20 years. He shared some challenges outside of IBD as well.

“Connections are always big — we’re trying to figure out when we’re talking to Crohn’s,” he said. This can be especially difficult for people who have had their colons removed and live with a colostomy bag. “How can you talk about this in a relationship or before sex?”

Even mundane tasks can trigger anxiety, Denton said. “There are things that people with normal bodies can take for granted. I have to think, ‘Hey, can I go to the store and get groceries without having to worry about running to the bathroom or having an accident?’ “Can I go out on a date, eat and drink comfortably — and not eat anything that would cause a flare-up?”

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There can be problems with friends and family who don’t understand the need to always be near the bathroom and how urgent it can be, said Guiden, a digital marketing specialist at JPA Health, a PR and marketing agency that helped develop My IBD. Life campaign.

Keefer, who is also an adviser to the campaign, said that “many GI conditions, not just Crohn’s and ulcerative colitis, have a lot of unpredictability that can add to the anxiety.” Uncertainty distinguishes IBD from many other chronic diseases.

What do you need time off for?

Employers may not understand the need for time off. People with IBD may hesitate to take time off from the office for fear of being seen as unable to work. For Guiden, it was because college professors refused to waive his absences when he missed classes due to IBD.

“Communication is very important for someone with a chronic illness to be able to find the accommodation they need. Also, don’t be afraid to escalate things if necessary,” Guiden said.

The campaign also aims to help providers take a more active role in managing IBD beyond physical symptoms. In the survey, many providers reported feeling less prepared to deal with the emotional issues than the physical aspects of IBD.

Education and awareness

“The subject matter can be very uncomfortable for a lot of people, sometimes myself included, of course, and it leads to a kind of self-censorship,” Denton said. Try to consider how much someone you’re talking to wants to know about their personal IBD challenges.

However, she added, “Anyone you meet who doesn’t know about IBD is an opportunity for education.”

The My IBD Life website is another way to do this. If someone feels uncomfortable talking about the details or IBD, those affected can refer others to this resource. That way, Denton says, 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.

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Keefer agreed. “The campaign really breaks down common emotional concerns for patients, giving them real tips and tricks based on real patients and providers. It’s very evidence-based guidance, but also very practical, tangible information for patients.”

It was conducted between June 27 and July 5, 2022, surveying 1,026 IBD patients aged 18 to 59 years. The provider survey was conducted at the same time as the responses of 117 gastroenterologists.

IBD and inequality

The survey also revealed that different communities may experience the challenges of IBD in different ways. For example, one question asked respondents to rate on a scale of 0 to 10, where 0 does not apply and 10 applies very well to my experience, the following: “My IBD journey has been influenced by my race, ethnicity and my culture. , sexual orientation, gender identity and/or age.”

The average rating of all 1026 respondents was 3.57. However, people of color rated this statement 4.5 and black people 4.7.

“I’m not trying to speak for the people behind the survey, but I’m speaking from the perspective of being an IBD patient and also a member of a non-profit organization. Base color for Crohn’s and colitisis a nonprofit focused on increasing medical access and resource equity for black and brown IDB patients,” Denton said.

“Unfortunately, it’s rooted in a bit of systemic discrimination” and related to the historical treatment of black and brown patients, he added. Issues include equal access to care and treatment and participation in clinical trials that are more representative of the US population. “Some things have very little to do with who we actually are as individuals and more to do with the structure of the medical environment.”