PPeople who have inflammatory bowel disease (IBD)—a common term for Crohn’s disease and ulcerative colitis—often experience a range of symptoms, from intense abdominal cramps and pain to persistent diarrhea and extreme fatigue. Living with IBD can significantly disrupt daily life and make it challenging to maintain physical and mental well-being.
There is no cure for IBD – it lasts a lifetime. Like other chronic conditions, IBD can go into remission with effective treatment, but people can still experience occasional flare-ups that make life difficult.
Approximately 1.6 million people in the United States have Crohn’s or ulcerative colitis, and about 70,000 new cases of IBD are diagnosed in the United States each year. Here’s what seven patients with the disease wish doctors knew when it comes to helping them manage the condition more effectively.
We want you to be upfront about knowledge gaps
Researchers have learned a lot about IBD, including risk factors such as smoking, family history of the condition, and antibiotic use—but there is still much to learn about why someone develops IBD. One of the biggest questions patients tend to have is: What caused this? And more often than not, doctors simply don’t have an answer.
Being clear about that would be helpful, says Georgia resident Lisamarie Monaco, 49, who was diagnosed with IBD in 2002. “I wish our doctors knew the real cause of IBD,” she says. “But until then, it would be nice to have more transparency and directness about what is not known.”
Talking about new research gives us hope
Part of the discussion about how much remains to be discovered could focus on what is being done to find new treatments, adds Brooke Abbott, 39, a Los Angeles resident who had surgery in 2012 to remove colon for managing IBD.
“Hearing about clinical trials and research progress is very important because even if it doesn’t directly affect the patient, it gives us hope that it’s working,” she says. “We take comfort in knowing that there may be something coming down the road that can make a difference.”
Such conversations can also lead to the inclusion of patients in clinical trials, she says. Clinical trials aren’t always focused on drugs, Abbott notes; some examine things like the value of mental health support or stress relief.
“Many of us are eager to be a part of moving IBD management forward, not just managing our symptoms on an individual basis,” Abbott says. “People with IBD are very connected to each other for support, so we are keen to improve not only our lives, but also those of others with the condition.”
Even if patients don’t match clinical trials, it’s empowering to feel included in the process, adds Connecticut resident and IBD patient Kelly Owens, 34, whose work as a clinical researcher has helped her understand what it feels like to contributed to scientific progress.
“We need to change the narrative and refocus our collective efforts on advancing research and translating new therapeutics into clinical practice,” she says. “It is not enough to focus only on disease awareness initiatives. We are all aware. We need action now.”
Read more: How to maintain your social life when you have IBD
Be aware of potential racial bias
Abbott’s journey from IBD diagnosis to management was difficult, she says: It took her nearly 12 years to find a care team that didn’t dismiss her symptoms. In the past, doctors have implied that she sought drugs because she was in intense pain or that she was “wiping too hard” when a bowel movement would fill the toilet with blood.
“As a Black woman, I think gaslighting has been pretty dominant in my care for a long time,” she says. “It’s extremely frustrating to be debilitated by this disease and then be told it’s no big deal, or that I couldn’t have IBD unless one of my parents was Jewish.”
While the risk of IBD is higher in the Ashkenazi Jewish population, such a statement implies that most Blacks do not develop the condition. In fact, researchers at Johns Hopkins Medicine concluded that blacks are at significant risk for IBD because they have a genetic marker linked to the disease—the same gene variant that makes them four times more likely to develop lupus than white Americans.
According to research in The American Journal of GastroenterologyBlacks also tend to have less access to IBD specialists, experience higher rates of disease complications, and visit the ER more frequently for intense IBD symptoms. Abbott hopes that greater awareness of issues like these can lead more doctors to think about whether they are operating from a position of unconscious bias or whether they can do more to address bias in their health care systems.
We want an in-depth discussion about nutrition
Six years after his IBD diagnosis in 2003, Sanjiv Devraj felt he needed to have his own permanent room at the hospital. The 52-year-old Atlanta resident experienced frequent pain, weakness and bleeding as a result of his severe ulcerative colitis. He asked the doctors what he should eat, but received scant information.
“I often felt defeated,” he recalls. “Since this is a disease that affects the digestive system, I wanted my doctors to talk more about nutrition, but it wasn’t covered in our appointments. I felt compelled to do my own research.” Through a process of trial and error with a range of foods, he finally found a nutritional path that not only gives him more energy overall, but also keeps him out of the ER.
“I wish I had more support through this process and maybe some research on how certain foods affect gut health,” he says. “More focus on building a healthy gut through food and also through other lifestyle habits like exercise and sleep would be a conversation I think anyone with IBD would like to have.”
Even just talking about why it’s important to find out which foods trigger symptoms is helpful, says Delaware resident Marijana Sarcic, 56, who was put on a specific eating plan called the low-FODMAP diet when she was first diagnosed. . That approach involved eliminating many foods and then adding them back into her diet; The strategy made it very clear which foods triggered her IBD, such as gluten, garlic and onions.
It would also be helpful for doctors to mention that IBD patients may not need to avoid trigger foods forever, Sarchich adds. Part of the way both Devraj and Sarcic navigated the dietary changes was to reintroduce problem foods occasionally and see if they were still on the “avoid” list. For example, Sarcic says she experienced symptoms with a huge array of foods when she was first diagnosed—but over the years, the list has whittled down to just a few culprits. She believes that if doctors monitored the effects of these lifestyle habits in the same way they manage the results of medication, it could contribute to more meaningful care.
Stress management should be a major part of treatment
Although stress is not considered a cause of IBD, it can be a major trigger for symptoms, many people with IBD have found. Research confirms it: A 2019 study in Frontiers in Pediatrics showed that for both children and adults, psychological stress is associated with relapses, as it can have significant and negative effects on the digestive system.
Another study, published in a 2018 issue Proceedings of the National Academy of Sciencessuggests that chronic stress may also lead to IBD progression, meaning that what may have started with mild symptoms may worsen over time if stress is not managed.
That’s why incorporating stress relief into your overall treatment plan could be a key way to keep the disease under control, says 32-year-old Texas resident Samantha Plevny.
“When you’re stressed and sick, this can be really hard to manage emotionally,” she says. “I wish my doctors knew how damaging this disease is and how difficult it is to maintain a normal life with daily activities along with appointments, regular medications or infusions and the stress of flare ups. “Maybe they do, but if so, I’d like them to talk more about it.”
Being under that much stress can feel isolating, Plevni adds, and there were several meetings during which she tried to articulate that she no longer felt like she was really living — just existing. For example, when she experiences flares, she can’t go out with her friends or eat the foods she likes. She also has to manage her condition while taking care of her family and juggling a career.
“This disease goes beyond the physical symptoms—it can be incredibly stressful, and addressing that needs to be part of the treatment,” she says.
Read more: These environmental factors increase the risk of IBD
Mental health needs need to be better addressed
Stress is just one mental health concern that can be caused by IBD. There’s also anxiety about burnout, potential shame about symptoms, discouragement with treatment options that don’t work well, and the frustration that comes with managing a chronic illness. A 2021 study in the journal The borders in
Psychiatry noted that mental health is an important, yet neglected, aspect of IBD care.
“I wish doctors were more aware of how to help with the mental side of IBD, especially when it’s causing discomfort,” says Cassie Mahon, 39, of Ohio. “I also wish doctors would make it easier for shy people to talk to them.” about symptoms that are difficult to talk about.’
For example, she adds that one-on-one conversations can be challenging for some patients, but it’s not the only way to support mental health. Doctors could be proactive by compiling a printed list of mental health resources and offering virtual visits for IBD patients—even just leaving home can be overwhelming and anxiety-filled when symptoms are intense, Mahon says. Looking to support networks, both online and in person, can be another important step in supporting patients, she adds.
As with caring for any kind of condition, chronic or not, simply listening can also go a long way, Plevni adds, especially when a patient is talking about feelings of sadness or defeat.
“There’s something to be said for finding a doctor who listens when you say your mental health is a negative influence and who trusts your knowledge of your body and mind,” she says. “It helps me, and it would help anyone, cope better with this disease.”
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