March 24, 2023 – Joshua Denton was diagnosed with ulcerative colitis in his third yr of school, and was not only afraid of the brand new diagnosis, but additionally of the way it could change the remaining of his life.
His initial fear stemmed from having “something that is technically considered incurable.” Then got here the challenges of day by day life with inflammatory bowel disease (IBD).
“You just worry about what the quality of life is going to be like. Will it ever be the same, will it get better, or will it just get worse over time?” says Denton, now a 37-year-old aerospace project manager in Dallas.
According to a survey of greater than 1,000 people by the American Gastroenterological Association (AGA), individuals with IBD usually tend to experience anxiety, depression and other life challenges than they were six years ago.
At the identical time, many healthcare providers imagine that patients' psychological needs are being met, in line with an accompanying survey of greater than 100 healthcare professionals who treat Crohn's disease and ulcerative colitis.
So why this discrepancy? People with IBD are sometimes hesitant to consult with their doctor about relationship problems or difficulties at work because they don't wish to be a burden, says Laurie A. Keefer, M.D., a psychologist and professor of drugs on the Icahn School of Medicine at Mount Sinai in New York City who makes a speciality of helping individuals with IBD develop coping skills and resilience.
Sometimes doctors don't wish to ask questions that may be inappropriate or make patients uncomfortable. “There's a lot of good intentions on both sides,” Keefer said. “But I think there's a real disconnect about what really needs to happen.”
The survey results showed that 36% of individuals with IBD experience anxiety and 35% experience depression. This reflects a gradual increase in anxiety and depression diagnoses since 2017. For comparison: The national rate of anxiety is 19% and for depression, it’s 8%, in line with a 2017 report by the National Alliance on Mental Illness.
What is the connection?
There are probably two the explanation why anxiety and depression are more common in individuals with IBD, Keefer said. It is becoming increasingly clear that these disorders share inflammatory pathways with autoimmune diseases, particularly pathways related to the brain-gut system.
“The second problem is that these conditions themselves cause depression because you have so much to deal with,” she added. “You don't feel good when you're not getting out and doing things, and for some people that actually manifests itself in depression.”
The risk of depression also can increase when IBD is lively. Keefer said, “If you're sick and you're in bed and you're not working and you're not seeing your friends, you're going to get more and more depressed.”
The survey also highlights the impact that IBD can have beyond mental wellbeing – including challenges in relationships, the workplace and educating others in regards to the disease. The AGA used the outcomes as the premise for a brand new resource called My life with IBD.
“The idea is to really simplify the conversation about the emotional toll of IBD,” Keefer said. In My IBD Life, real individuals with IBD share recommendations on methods to consult with family and friends about these challenges, methods to manage their work-life balance and methods to travel. “Many of my patients wouldn't take a vacation that involved flying on an airplane.”
The campaign also focuses on helping younger people, since IBD is usually diagnosed in the teenagers or early twenties. “The mental health needs of young adults are high and are increasing after COVID,” Keefer said. “These are also people who are trying to get their lives together and then they get hit with the disease.”
Unpredictability increases fear
Kamilah Guides was diagnosed at age 12 and has suffered from Crohn's disease for greater than 20 years. She shared some challenges that transcend IBD itself.
“Relationships are always important – you have to figure out when to have that conversation with Crohn's disease,” she said. It might be especially difficult for individuals who have had their colon removed and live with a colostomy bag. “How do you talk about it in a relationship or even before sex with someone?”
Even on a regular basis errands can trigger anxiety, Denton says. “There are things that people with normal functioning bodies take for granted. I have to think, 'Hey, can I go to the store and buy groceries without having to worry about having to go to the bathroom or having an accident?' 'Can I go on a date and eat and drink in peace – and not eat anything that might trigger a flare-up?'”
There might be problems with family and friends who don't understand how necessary it’s to at all times be near a rest room and the way urgent that need might be, says Guiden, a digital marketing expert at JPA Health, a public relations and marketing agency that helped develop the My IBD Life campaign.
Keefer, who also serves as an adviser to the campaign, said that “many gastrointestinal diseases, not just Crohn's disease and ulcerative colitis, come with a lot of unpredictability, which can increase anxiety.” This uncertainty sets IBD other than many other chronic diseases.
You need day off, for what?
Employers may not understand why that you must take day off. People with IBD could also be hesitant to ask for day off from the office in order to not be seen as unable to work. For Guiden, it was college professors who were unwilling to forgive her absence when she missed classes due to her IBD.
“Communication is very important when you have a chronic illness and being able to make the necessary adjustments. Also, don't be afraid to escalate things if necessary,” Guiden said.
The campaign also goals to assist providers take a more lively role in treating IBD beyond the physical symptoms. Many providers within the survey said they feel less equipped to treat the emotional issues than they do to treat the physical points of IBD.
Education and awareness
“The subject can be very uncomfortable for a lot of people, admittedly myself included, and it leads to a kind of self-censorship,” Denton said. He tries to take note of how much someone he's talking to desires to learn about their personal IBD challenges.
At the identical time, he added, “If you meet someone who doesn't know anything about IBD, it's an opportunity to educate them.”
The My IBD Life website might help on this area too. If someone is uncomfortable talking about the main points or IBD, they’ll refer others to this resource. This way, Denton says, people can take their time and learn as much as they need about living with Crohn's disease or ulcerative colitis. The personal stories shared on the web site really “humanize” IBD.
Keefer agreed. “The campaign analyzes patients' emotional concerns and gives them real tips and tricks based on real patients and doctors. It's very evidence-based guidance, but also very practical, tangible information for patients.”
The patient survey, with responses from 1,026 people ages 18 to 59 with IBD, was conducted June 27 to July 5, 2022. The provider survey, with responses from 117 gastroenterologists, was conducted at the identical time.
IBD and inequality
The survey also found that different communities may experience the challenges of IBD in other ways. For example, respondents were asked to rate on a scale of 0 to 10, with 0 meaning “not true” and 10 meaning “very true of my experience,” namely: “My IBD experience has been influenced by my race, ethnicity, culture, sexual orientation, gender identity, and/or age.”
The average rating of all 1,026 respondents was 3.57. However, people of color rated this statement 4.5 and black patients gave it 4.7.
“I will not try to speak for those behind the survey, but I will speak from my own perspective: I am an IBD patient and also part of a non-profit organization called Color of Crohn's disease and chronic illnessa nonprofit organization focused on improving medical access and equitable treatment for Black and Brown IDB patients while taking resources into account,” Denton said.
“Unfortunately, it's rooted in a certain amount of systemic discrimination,” referring to the historical treatment of black and brown patients, he added. Issues include equitable access to care and treatment and participation in clinical trials which might be more representative of the U.S. population. “Certain things have very little to do with who we are as actual individuals and much more to do with the structure of the medical environment.”