People who have inflammatory bowel disease (IBD)—which is the umbrella term for Crohn’s disease and ulcerative colitis—often experience a range of symptoms, from intense abdominal cramping and pain to persistent diarrhea and overwhelming fatigue. Living with IBD can significantly disrupt everyday life and make it challenging to maintain physical and mental wellbeing.
There’s no cure for IBD—it lasts a lifetime. Like other chronic conditions, IBD can go into remission with effective treatment, but people might still experience occasional flares that make life more difficult.
Approximately 1.6 million people in the U.S. have Crohn’s or ulcerative colitis, and about 70,000 new cases of IBD are diagnosed in the U.S. 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 gaps in knowledge
Researchers have learned a lot about IBD, including risk factors such as smoking, family history of the condition, and antibiotic use—but there’s 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 the 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 actual cause of IBD,” she says. “But until then, it would be nice to have more transparency and directness about what isn’t known.”
Talking about new research gives us hope
Part of the discussion around how much is left to discover could focus on what’s being done to find new treatments, adds Brooke Abbott, 39, a Los Angeles resident who had surgery in 2012 to have her colon removed for IBD management.
“Hearing about clinical trials and research advances is super important because even if that doesn’t affect the patient directly, it gives us hope that work is being done,” she says. “We take comfort in knowing there might be something coming down the road that might make a difference.”
Such conversations could also lead to patient involvement in clinical trials, she says. Clinical trials aren’t always centered on medications, Abbott notes; some examine things like the value of mental-health support or stress relief.
“Many of us are eager to be part of what’s moving IBD management forward, not just controlling our symptoms on an individual basis,” Abbott says. “People with IBD are very connected to each other for support, so we’re interested in improving not just our lives, but those of others with this condition, too.”
Even if patients aren’t a match for clinical trials, making them feel included in the process would be empowering, adds Connecticut resident and IBD patient Kelly Owens, 34, whose work as a clinical researcher has helped her understand how it feels to contribute to scientific progress.
“We need to change the narrative and refocus our collective efforts on advancing the research and translation of novel therapeutics into clinical practice,” she says. “It’s not enough to focus only on disease awareness initiatives. We’re all aware. Now we need action.”
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 has been difficult, she says: It took almost 12 years for her to find a care team that wasn’t dismissive of her symptoms. In the past, doctors have implied that she was a drug seeker because she was having intense pain, or that she was “wiping too hard” when a bowel movement would fill the toilet with blood.
“As a Black woman, I do think the gaslighting was pretty dominant in my care for a long time,” she says. “It’s extremely frustrating to be debilitated by this disease and then told it’s no big deal, or that I couldn’t possibly have IBD unless one of my parents was Jewish.”
While IBD risk is higher among the Ashkenazi Jewish population, such a statement implies that most Black people don’t develop the condition. In actuality, researchers at Johns Hopkins Medicine have concluded that Black people are at significant risk for IBD since they have a genetic marker related to the disease—it’s 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 Gastroenterology, Black people also tend to have less access to IBD specialists, experience higher rates of disease complications, and visit the ER more often due to intense IBD symptoms. Abbott hopes that greater awareness of issues like these could lead more doctors to reflect on whether they’re operating from a position of unconscious bias, or if they can do more to address bias within their health-care systems.
We crave in-depth discussion about nutrition
For six years after his IBD diagnosis in 2003, Sanjiv Devraj felt like he should 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 his doctors what he should be eating, but received scant information.
“I often felt defeated,” he recalls. “Given that this is a disease affecting the digestive system, I wanted my doctors to talk more about nutrition, but that wasn’t covered in our appointments. I felt forced to do my own research.” Through a process of trial and error with an array of foods, he finally found a nutritional path that not only gave him more energy overall, but also kept him out of the ER.
“I do wish I’d had more support through this process, and perhaps some research into how certain foods affect gut health,” he says. “More of a focus on building a healthy gut through foods, and also through other lifestyle habits like exercise and sleep, would be a conversation I think anyone with IBD would love to have.”
Even just chatting about why it’s important to find out which foods trigger symptoms is helpful, says Delaware resident Marianne Sarcich, 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 sent her IBD into a flare, such as gluten, garlic, and onions.
It would also be useful for doctors to mention that IBD patients may not need to avoid trigger foods forever, Sarcich adds. Part of the way both Devraj and Sarcich navigated through diet changes has been to re-introduce problematic foods occasionally and see if they’re still on the “avoid” list. For example, Sarcich says she experienced symptoms with a huge array of foods when she was first diagnosed—but over the years, the list has dwindled to just a few culprits. She believes that if doctors kept track of the effects of these lifestyle habits in the same way as managing medication outcomes, it could make for more meaningful care.
Stress management should be a larger 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 backs that up: A 2019 study in Frontiers in Pediatrics found that for both children and adults, psychological stress is associated with relapses, since it can have significant and negative effects on the digestive system.
Another study, published in a 2018 edition of the Proceedings of the National Academy of Sciences, suggests chronic stress can also lead to progression of IBD, which means what may have started with mild symptoms could worsen over time if there’s no stress management.
Because of that, incorporating stress relief into an overall treatment plan could be a crucial way to keep the disease controlled, says 32-year old Texas resident Samantha Plevney.
“When you’re stressed and sick, this can be really hard to manage emotionally,” she says. “I wish my doctors knew how much of a toll this disease takes and how hard it is to maintain a normal life with everyday commitments along with appointments, regular medications or infusions, and the stress of symptoms flaring up. Maybe they do know, but if that’s the case, I wish they talked more about it.”
Being under so much stress can feel isolating, Plevney adds, and there have been several appointments during which she tried to articulate that she no longer felt like she was really living—only just existing. For example, when she’s experiencing flares, she’s not able to go out with her friends or eat foods she loves. She also has to manage her condition while caring for her family and juggling a career.
“This disease goes way beyond physical symptoms—it can be incredibly stressful, and addressing that should be part of treatment,” she says.
Read More: These Environmental Factors Increase the Risk of IBD
Mental-health needs should be better addressed
Stress is just one mental-health concern that can be sparked by IBD. There’s also anxiety over flares, potential embarrassment about symptoms, discouragement with treatment options that aren’t working well, and the frustration that comes with managing a chronic illness. A 2021 study in the journal Frontiers in
Psychiatry noted that mental health is a significant, yet overlooked, aspect of IBD care.
“I wish doctors were more aware of how to help with the mental side of IBD, especially when it causes embarrassing feelings,” says Ohio resident Cassie Mahon, 39. “I also wish doctors would make it easier for shy people to speak with them about symptoms that are hard to talk about.”
For example, she adds that one-on-one conversations may be challenging for some patients, but that’s not the only way to support mental health. Doctors could be proactive by putting together a printed list of mental-health resources and offering virtual visits for patients with IBD—even just leaving home can be overwhelming and full of anxiety when symptoms are intense, Mahon says. Looking into support networks, both online and in-person, could be another important step for patient support, she adds.
Like care for any kind of condition, chronic or not, simply listening can also go a long way, adds Plevny, particularly when a patient is talking about feeling down or defeated.
“There’s something to be said for finding a doctor who will listen when you say your mental health is being negatively impacted, and who trusts your knowledge of your body and mind,” she says. “That helps me, and would help anyone, be better able to manage this disease.”
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