Inflammatory bowel disease (IBD) has long been thought of as an ailment of middle, or even young, adulthood. The chronic illness—which includes Crohn’s disease and ulcerative colitis, and can cause abdominal pain, diarrhea, bleeding, and decreased quality of life—impacts about 3.1 million people in the U.S. However, it is far from a disease only of the young and middle-aged. More than a quarter of people with IBD are elderly, a figure that is projected to climb to 30% by 2030, according to a 2021 Gastroenterology & Hepatology article.
Even more underappreciated is the growing population of people who are diagnosed with the disease after they turn 60. Whereas IBD was once taught as a disease with two spikes in onset—20s to 30s, and 40s to 50s—doctors are learning there is a third spike that begins later in life. “Now we know you can be 75 and get IBD,” says Dr. Simon Hong, a gastroenterologist and IBD specialist at NYU Langone Health.
Regardless of when the disease starts, however, understanding—and treating—IBD in older adults comes with its own set of challenges and intricacies.
IBD looks different in older adults
Hundreds of thousands of people whose IBD was diagnosed earlier in their lives are now living with the disease in older age. For many that means living with the damage the disease has done to their intestinal tract, and sometimes with the altering impacts of surgery done to manage it, such as ostomy pouches or increased incontinence. Not to mention continued flare-ups.
It used to be commonly thought that disease activity tapered off in older age, and some people do find their IBD becomes inactive later in life. But that isn’t always the case, says Cleveland Clinic gastroenterologist Dr. Jessica Philpott. “I certainly see some patients who develop more aggressive disease as they advance in age,” she says.
For individuals who get IBD after they turn 60, the disease can look somewhat different than for those who have had it for decades. Whereas younger Crohn’s patients can have damage in any part of their intestinal tract, in older-onset cases it more often primarily affects the colon.
As people age, diagnosing a new case of IBD also gets more challenging. There are numerous, more common reasons an elderly person might experience, for example, bloody diarrhea. This alarming symptom is one of the first reasons for IBD evaluation in a younger person. But for someone in their 60s or older, doctors often need to rule out a host of other conditions—including infection, ischemia of the colon, other forms of colitis, diverticulitis, and cancer—before they look into IBD as a potential cause.
And because older adults have often already faced more health issues, they might not seek medical help as promptly. Crohn’s in particular can be trickier to pinpoint than ulcerative colitis, as it might present as intermittent abdominal pain and weight loss, which aren’t uncommon in older adults generally. These factors can sometimes delay proper diagnosis, and thus effective treatment, by years.
Dr. Gil Melmed, director of inflammatory bowel disease clinical research at Cedars-Sinai Medical Center in Los Angeles, recounts the story of one patient who is now 84. She had been hospitalized numerous times for abdominal pain and bloody diarrhea. Doctors repeatedly diagnosed her with diverticulitis and treated her with antibiotics. Her symptoms would get better for a while and then return. Then the antibiotics led to additional complications, including a dangerous C. difficile infection. When Melmed first saw her, after yet another hospital admission, he realized she wasn’t suffering from diverticulitis at all but Crohn’s disease.
Hong has seen this misdiagnosis cycle countless times. “Doctors do have to always remember to have IBD on their list” for people who are older, he says.
The rate at which people are getting late-onset IBD appears to be increasing, likely because of environmental triggers like air pollution, which makes being vigilant even more important.
Inflammaging, menopause, and other complexities
At its core, IBD is a disease of chronic inflammation. Aging itself is also linked with increased inflammation, a connection that has given rise to the term inflammaging. So aging patients with IBD are at even greater risk for many of the classic inflammation-linked health outcomes, including cardiovascular disease, cancer, obesity, skin issues, arthritis, and skeletal muscle loss.
Experts caution that some common health complaints may look similar to those of older adults without IBD, but in reality the IBD has triggered a different issue. For example, joint pain in an older patient might first appear to be osteoarthritis, but if they have IBD, it may well be a different form of arthritis altogether.
Older IBD patients also have increased risks for other conditions including osteoporosis, colon and skin cancers, blood clots, and general physical deconditioning.
The long list of potential health issues increases the importance of standard preventative care, including good nutrition and exercise, as well as simple things like routine immunizations, Melmed notes. Until recently, many vaccines for older adults contained live virus, making them riskier to mix with some IBD therapies. This is no longer the case, he says, and in fact, because so many IBD treatments suppress the immune system—and aging itself is associated with an increased risk of infections—it is especially important for these patients to get regular vaccines for things like pneumonia.
There are still many unknowns about the intricacies of the aging body as it is impacted by IBD, and vice versa. For example, we don’t yet know much about how aging with IBD looks different for women going through menopause and afterward, and what role menopause treatments might play in the disease course. Some small studies have found a modest protective role for estrogen-replacement therapies for IBD disease activity, but the answers aren’t yet definitive. “We really need more data in this area,” says Dr. Sunanda Kane, who specializes in IBD and women’s health at Mayo Clinic in Rochester, Minn.
But even something as big as menopause can be missed—or misinterpreted—when doctors are overly focused on a patient’s IBD and its treatments. Kane recalls one 57-year-old patient who was on a newer monoclonal antibody therapy for her ulcerative colitis. One day the patient told her primary-care doctor that she was having “fevers” and “confusion.” The doctor concluded she was likely suffering from a rare brain infection as a result of her IBD medication, told her to discontinue her medication, and referred her to a neurologist. While the patient waited anxiously for her neurology appointment, she called Kane to ask what other IBD medication she could take instead. Kane listened to the patient’s story and realized that her symptoms were those of menopause. Back on her previous IBD treatment and estrogen-replacement therapy, the patient ended up doing well, Kane reports. But it served as a reminder that the presence of IBD can cloud the assessments of a patient’s full picture, especially when big health changes come up, as they so often do during the aging process.
One thing that has become clear as more people live with IBD into older age is that when evaluating patients for IBD and their treatment prospects, it’s not just about age. Experts now advocate basing decisions on one’s frailty score over chronological age. And like inflammation, the combination of aging and IBD increases the odds of frailty, which puts someone at greater risk for poor health outcomes.
Confusion around treating elderly IBD
As anyone ages, treating illness tends to get more challenging. There are more comorbidities, a lengthening list of medications, and a person’s overall health to take into account. These factors become even more important when considering IBD therapies. “Anything we do, from procedures to treatment, it’s different for someone that’s older,” says Cleveland Clinic’s Philpott.
Once the disease advances to a particular state, doctors often look to surgery to remove the damaged part of the intestinal tract. This, however, is not always an option for extremely frail patients with IBD, no matter what their chronological age.
The disease, of course, can typically be managed well with medication. But there are some common pitfalls, warn specialists who work with elderly IBD patients.
One of the biggest concerns in pharmaceutical treatments for older IBD patients is susceptibility to infection, because nearly all IBD drugs in some way tamp down the immune system, which is already on the decline with age. But this concern, say experts, can lead to vast undertreatment of the condition—or treatments with even riskier forms of drugs.
For decades, corticosteroids have been a standby of IBD therapy. And they are still indicated for short-term treatment of mild to moderate disease flare-ups, particularly in younger adults. But their long-term use, especially for older adults, is less effective than other options, and can actually bring higher risks, including for hypertension, diabetes, bone loss, infection, osteoporosis, and overall mortality.
Nevertheless, some 30% of elderly IBD patients have been prescribed steroids for more than six months at a time, according to a 2015 study in Inflammatory Bowel Diseases. Part of the reason, NYU’s Hong says, is that because of these drugs’ long history, “they’re seen as sort of the ‘safe’ option.” Instead, he says, “I would argue that rather than being on steroids for a long period of time, it would be much better to be on one of the new biologics.”
In the past couple of decades, small molecule “biologics” have entered the scene as a newly established treatment for IBD. Particularly effective are drugs like antitumor necrosis factor agents. Some clinicians are reluctant to prescribe these medications, however, because they are known to increase the risk of cancer, such as lymphoma, especially in older adults. Some doctors even recommend surgery—which comes with its own not insubstantial risks for older individuals—before trying biologics.
Melmed’s 84-year-old patient who was finally diagnosed with Crohn’s disease was immediately started on biologics, and has yet to have another flare-up. Melmed acknowledges there are risks with these drugs for older patients. But he looks at the larger picture of “how to best benefit a patient,” he says. “There’s no risk-free option. Just because somebody’s older, we certainly don’t want to deny them the potential benefits of an effective therapy.”
As part of that approach, Melmed advocates assessing not just patients’ intestinal health but also their environment and well-being.
Younger people with IBD are known to have higher rates of depression and greater challenges navigating normal life, because of the unpredictability of attacks. And there’s no reason to think this would be different for people just because they are a few years—or decades—wiser. But depression can be more difficult to spot in an elderly patient if it isn’t screened for, and being fairly homebound or lacking social support might be accepted as normal. Yet it doesn’t have to be that way, experts agree.
“As doctors, we’re always focused on inflammation,” NYU’s Hong says. “But in reality, what matters is: What does this older patient want to do? Do they want to travel? Or ride a bike around the park?” And that’s where experts say the conversation around treatment risks and benefits should focus. “Just because they’re older doesn’t mean that they don’t deserve the same quality of life,” Hong says. “Don’t settle for less.”