The person sitting next to you at work or on the bus may have IBD, but you’d most likely never know. While the estimated 10 million people worldwide living with this chronic disease regularly experience abdominal pain, fatigue and persistent diarrhea, many of them appear relatively healthy. And these symptoms can be severe to the point of debilitating, making it very difficult for these patients to go to work, school or be productive.
“Living with IBD is like having a backpack on your shoulders,” said Luisa Avedano, chief executive officer of the European Federation of Crohn’s & Ulcerative Colitis Associations (EFCCA). “Sometimes it’s light, and you don’t realize it’s there. Sometimes it’s heavy, making it difficult—or even impossible—to walk.”
On this year’s World IBD Day, the goal is to “make the invisible visible.” Avedano, EFCCA members and other IBD patient advocates from all over the world are working to uncover the aspects of IBD that are not always obvious to others. Avedano believes that raising awareness of IBD is ultimately critical to helping improve the lives of people who are affected by this disease.
The Invisible Costs of IBD
Crohn’s disease and ulcerative colitis, the two most common forms of IBD, accounted for 1.3 million doctor visits and 92,000 hospitalizations in one year in the U.S. alone. Those visits really add up; costs for treating IBD have been estimated to be higher than $6.3 billion per year.
But that staggering figure doesn’t even take into account some of the “invisible” costs, such as lost work or school days and the cost of childcare during treatment, which could add another $5.5 billion per year. Avedano believes that a clear understanding of both the direct and hidden indirect costs of IBD is needed to make the case for investing in new ways to address these diseases.
“A big part of the costs is not often taken into consideration,” she said. “We need to shift the discussion to the broader idea of the real costs of dealing with IBD.”
To that end, EFCCA is surveying people in Europe who have IBD about their indirect costs in hopes of improving outcomes and reducing costs.
Beyond the Physical
Pain may be an obvious symptom of living with IBD, but the emotional aspects, such as stress and anxiety, are some of the many “invisible” obstacles, according to Avedano.
Even during remission, a study reported that up to 35 percent of people living with IBD experience anxiety or depression. During a relapse, that number jumps to a staggering 80 percent for anxiety and 60 percent for depression. Anxiety and depression can negatively affect an individual’s work and social lives and undermine their happiness. In short, the emotional impact potentially creates a bad situation even worse for these patients.
This emotional distress can be rooted in the physical pain and the unpredictability of these diseases. “You may be okay today, but you’re never sure how you’ll feel the next day,” Avedano said. “That’s sometimes difficult to explain to people who don’t understand the disease.”
By raising awareness of the “invisible” emotional impact of IBD, Avedano believes that doctors—as well as friends and family—can help people better cope with the disease. While avoiding stress and anxiety may be impossible, patients can find ways to manage those feelings. Talking with other people about their feelings in and of itself can help.
We’re trying to make all the stakeholders understand that an important way to manage and overcome IBD is to be united.
Waiting on a Diagnosis
The disease is so “invisible” that it often takes a while for patients to be diagnosed. A European survey reported that 45 percent of patients waited more than a year before getting diagnosed with IBD, and 17 percent waited longer than five years. In a U.S. survey, patients with IBD saw more than three doctors on average before being diagnosed correctly.
The problem is that the symptoms of IBD aren’t specific, so patients are often misdiagnosed by their primary physician. Awareness is key – earlier diagnosis leads to earlier treatment and improved outcomes for patients, according to Avedano.
One way to reduce the severity of the invisible aspects of IBD, including the direct and indirect costs and the emotional toll the disease takes on people and their loved ones, is to diagnose it early and treat it effectively. But treatment remains a challenge. While IBD is currently treated with several classes of medications, there is no cure. Increased awareness of the disease will also bring more attention to the need for continued research for Crohn’s disease and ulcerative colitis.
EFCCA is raising awareness across more than 50 countries for World IBD Day by holding events and highlighting famous landmarks throughout Europe in purple – the official color for IBD awareness. Avedano herself is proud to help spread the word. She wants every patient to know they are not alone. “We’re trying to make all our stakeholders understand that an important way to manage and overcome IBD is to be united.”
To learn more about trends in IBD, listen to our recent “Why Is IBD on the Rise?” podcast.