Why We Need to Speak Out About IBD
Published: June 29, 2022
Many conditions that we’re now comfortable talking about – from breast cancer to diabetes – were once taboo topics. Decades ago, it was rare to hear celebrities talk about their medical problems and treatments or even for our friends and family to share their cancer diagnoses. Times have changed for many medical conditions; nowadays, it’s common to hear about a celebrity with endometriosis or mental health challenges, and friends and family to openly discuss their cancer. Unfortunately, we’re still not out in the open about many digestive ailments, including Crohn’s disease and ulcerative colitis, collectively known as inflammatory bowel disease (IBD).
The explicit details of bloody stools, bowel urgency or incontinence, and debilitating pain in the abdomen or joints are frequent symptoms of active Crohn’s disease and ulcerative colitis. These topics are often difficult to discuss on the job or on first dates. For public figures, and many others, their experience of living with these chronic intestinal conditions can be embarrassing, scary, and even traumatic. They may also feel shame, a feeling rooted in an antiquated idea of polite society where people don’t talk about their bowels. And so, they avoid talking about their disease.
While staying silent about IBD is the easier path for many people, silence perpetuates the notion that it’s unacceptable to talk about digestive issues. To eliminate this harmful taboo and save future IBD patients from unnecessary embarrassment and stress, we must encourage open discussions about digestive health. In this way, we can also help create a path to earlier diagnoses, and better treatment conversations between patients and clinicians.
According to a national survey that we conducted, over 25% of the general public describes having some kind of chronic gastrointestinal problem – and nearly 20% of these individuals report that they are frequently embarrassed to talk about their symptoms. It is striking to note that more than one-third of these symptomatic individuals say they have not even discussed their problems with a doctor. In the case of IBD, early diagnosis is critically important; when people aren’t comfortable seeing a doctor about symptoms that may be IBD, they risk progression to more serious disease, permanent damage, and continued poor quality of life.
Like many other patients with IBD and gastrointestinal diseases, José Torres initially wanted to fight through his gut troubles. His family upbringing, Latino culture, and his avid passion for boxing instilled in him the virtue of perseverance. In José’s mind, it was important to overcome his gut issues with physical and mental toughness. It was this combination of cultural and personal factors that made José hesitant to see a doctor despite his excruciating gut pain. Instead of immediately seeking help, José hoped his symptoms would resolve themselves and that they weren’t serious. Unfortunately, it was actually very serious.
José eventually did find his way to a gastroenterologist, and he was diagnosed with ulcerative colitis. Sadly, over the next several months, his disease worsened. At this point, the medications that were prescribed for José were ineffective. His weight dropped, and he soon became bedridden. With the urging of his doctors, José underwent an urgent surgery to remove his colon and rectum. As a result of seeking help for his gut issues, José had life-saving treatment. Now, José is once again thriving.
Unfortunately, this story of delayed diagnosis and treatment is all too common among IBD patients. Fear, anxiety, and even embarrassment can prevent patients from seeking help and obtaining an accurate diagnosis. To help people like José get the right treatment more quickly, we must build a culture in which people are comfortable talking about digestive health, despite initial embarrassment.
In today’s environment of silence around IBD and digestive health, people like José too often pay the price. Our collective silence on chronic digestive health issues means that most people – and even some doctors and nurses - don’t understand that anyone can have IBD, regardless of race, ethnicity, or socioeconomic background. As a result, some providers may incorrectly rule out an IBD diagnosis in a non-white patient. In fact, most people newly diagnosed with IBD have no family history of IBD and no identified trigger for its onset, so it’s incredibly important for healthcare providers to recognize early symptoms and consider the diagnosis of Crohn’s disease or ulcerative colitis. Too often, well-meaning providers misdiagnose a patient with the non-inflammatory irritable bowel syndrome (IBS), a common functional disorder that is non-progressive.
To reduce the stigma around digestive health, it’s important to help people be comfortable talking about their symptoms. Nonprofits dedicated to curing IBD and other digestive diseases are the perfect starting point for open discussions. For example, we are running public service announcements sharing the symptoms of IBD to help educate people and encourage them to talk to a specialist. We are also leading restroom access efforts through our Open Restrooms Movement and We Can’t Wait app, encouraging businesses and others to open their restrooms to patients in need. Once diagnosed, people with IBD can also join Foundation support programs to ask questions, share stories, and lean on a large community for support.
By getting involved with a nonprofit, patients can learn how to better understand their disease. In turn, they become more confident and are significantly more likely to talk publicly about their disease. As more family members, friends, and coworkers become comfortable with digestive health issues, a visit to the doctor’s office for gastrointestinal issues can also become normalized. To help start this movement in the IBD space, patients can join one of our one of our many support programs or call our IBD Help Center to ask in-depth questions about their personal situation.
If someone isn’t aware of IBD and its symptoms, they also aren’t aware of the many effective medical treatments that control the diseases and restore quality of life. Gastrointestinal issues don’t disappear when we try to ignore them. It’s time to raise awareness and shine a positive light on digestive health.
Dr. David Rubin is the chair of the Crohn's & Colitis Foundation's National Scientific Advisory Committee. Michael Osso is the president and chief executive officer of the Crohn's & Colitis Foundation.