March 24, 2023 – Joshua Denton was diagnosed with ulcerative colitis as a junior in college. He not only faced the anxiety of a new health diagnosis, but also how it could change the rest of his life.
His initial anxiety was to have “something that is technically considered incurable”. Then come the challenges of living with inflammatory bowel disease (IBD) on a daily basis.
“There’s just a level of worry about what your quality of life will be like. Will it always be the same, improve or just deteriorate 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 challenges 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 a supplemental survey of more than 100 healthcare professionals who treat Crohn’s disease and ulcerative colitis.
So why the disparity? People with IBD are sometimes reluctant to talk about relationship issues or difficulties at work with their doctor, saying they don’t want to be a burden, said Laurie A. Keefer, PhD, psychologist and professor of medicine at the Icahn School of Medicine at Mount Sinai in New York, specializing in helping people with IBD develop coping skills and resilience.
Sometimes doctors don’t want to ask questions that might be inappropriate or make people feel uncomfortable. “There are a lot of good intentions on both sides,” Keefer said. “But I think there’s a real disconnect on what 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. By comparison, the the national anxiety rate is 19% and for depression is 8%, according to a 2017 report by the National Alliance on Mental Illness.
What is the connection?
There are likely 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 related to the brain and gut.
“The second problem is that these conditions themselves cause depression, because there is 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 manifests as depression.”
The risk of depression may also increase when a person’s IBD is active. Keefer said: “When you’re sick and lying in bed and you’re not at work and you don’t see your friends, you’re going to get more and more depressed.”
The survey also reveals the impacts that IBD can have beyond mental wellbeing – including challenges in relationships, the workplace and when educating others about the conditions. The 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 burden of IBD,” Keefer said. My IBD Life features real people with IBD sharing tips on how they talk to friends and family about these challenges, how they manage their work-life balance, and how they travel. “A lot of my patients don’t go on vacation where they have to fly.”
The campaign also aims to help young people, as IBD is usually diagnosed when people are in their teens or early twenties. “The mental health needs of young adults are high and they’re increasing post-COVID,” Keefer said. “These are also people who try to master their lives, and then they are struck by disease.”
Unpredictability adds to anxiety
Kamilah Guiden was diagnosed at age 12 and has suffered from Crohn’s disease for over 20 years. She shared some challenges beyond the IBD itself.
“Relationships are always important – try to understand when you have that conversation with Crohn’s disease,” she said. This can be especially tricky for people who have had their colon removed and are living with a colostomy bag. “How do you tell someone in a relationship or even before having sex?”
Running errands can also cause anxiety, Denton said. “There are things that people with normal functioning bodies can take for granted. I have to think, ‘Hey, can I go to the store and get groceries without worrying about having to run 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 not understanding the need to always be close to a bathroom and the urgency of that need, said Guiden, a digital marketing professional at JPA Health. , a public relations and marketing agency that helped develop the My IBD Life campaign.
Keefer, who is also an adviser to the campaign, said “many gastrointestinal conditions, not just Crohn’s disease and ulcerative colitis, come with a lot of unpredictability which can add to anxiety.” Uncertainty distinguishes IBD from many other chronic diseases.
What do you need free time for?
Employers may not understand the need to take time off. People with IBD may be reluctant to ask to be out of the office to avoid being perceived as unable to work. For Guiden, it was college professors who didn’t want to give up on her absences when she missed classes because of her IBD.
“Communication is very important to have a chronic disease and to be able to obtain the accommodation you need. Also don’t be afraid to scale something if necessary,” Guiden said.
The campaign also aims to help providers take a more active role in the fight against IBD beyond the physical symptoms. Many providers said in the survey that they felt less equipped to deal with the emotional issues than the physical aspects of IBD.
Education and awareness
“The topic can be very uncomfortable for a lot of people, sometimes including myself, and it leads to a kind of self-censorship,” Denton said. He’s trying to figure out how much someone he’s talking to wants to know more 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 you. If anyone is uncomfortable talking about 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 truly “humanize” IBD.
Keefer agreed. “The campaign really breaks down common emotional concerns for patients, provides them with real tips and tricks based on real patients and providers. It’s very evidence-based advice, but it’s also very practical, tangible information for patients. patients.”
The patient survey with responses from 1,026 people aged 18-59 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 revealed that different communities may experience IBD challenges in different ways. For example, one question asked respondents to rate on a scale of 0 to 10, with 0 being not applicable and 10 applying very well to my experience, the following: “My IBD background has been influenced by my race, ethnicity, my culture, sexual orientation, gender identity and/or age.
The average score of the 1,026 respondents was 3.57. However, people of color rated this claim a 4.5 and black patients gave it a rating of 4.7.
“I will not attempt to speak for those who were behind the investigation, but I will speak through the prism of myself as an IBD patient and also part of a non-profit organization called Crohn’s Disease and Colitis Color Foundationa non-profit organization that is focused on improving medical access and equitable treatment of resources for black and brown IDB patients,” Denton said.
“Unfortunately, this is rooted in a bit of systemic discrimination” and relates to the historical treatment of black and brown patients, he added. Issues include equitable 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 are as actual individuals and have a lot more to do with the structure of the medical environment.”