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Understanding Inflammatory Bowel Disease
Have you ever had the sudden need to use the bathroom, yet none were nearby? Many of us have experienced this due to food poisoning or feeling sick, but the immediate need for a bowel movement, known as bowel urgency, can be particularly disruptive for people with ulcerative colitis (UC)2,3,7,8.
The CONFIDE (Communicating Needs and Features of IBD Experiences) Study – conducted by Eli Lilly and Company – has uncovered surprising statistics about the impact on those living with moderately-to-severely active UC by evaluating healthcare provider and patient experiences. Notably, this study found nearly 70% of adult American participants with moderately-to-severely active UC reported wearing diapers or pads at least once a month in the past three months due to fear of a bowel urgency-related accident6.
To understand the burdens of inflammatory bowel disease (IBD), a broad term used to identify chronic conditions of the digestive tract, such as UC and Crohn’s disease (CD), it’s important to understand its impact1. IBD affects nearly 7 million people globally, disrupting one’s daily life with debilitating symptoms such as stomach pain, diarrhea, bowel urgency and bowel urgency-related accidents, known as urge incontinence1-5. According to the Crohn’s & Colitis Foundation, a non-profit, volunteer-fueled organization dedicated to finding cures and improving the lives of people living with UC and CD, IBD diagnosis is most common for adolescents and young adults between ages 15 and 35.
The Impact of IBD Symptoms
For those living with UC, bowel urgency can strike at any moment, making it difficult to find a bathroom in time. The anticipation of an accident may cause individuals with UC to become hyper-aware of bathroom locations, pack extra clothing or protection when leaving home, or decline participation in social events.
“I consider myself to be a planner,” said Sophia, a patient advocate with UC. “But when experiencing a flare up of my ulcerative colitis, planning can feel impossible, especially with all of the bathroom breaks. Your body doesn't care about your plans.”
In addition to social activities, the CONFIDE study revealed the most common reasons for declining participation in work, school and physical exercise among respondents with moderately-to-severely active UC were bowel urgency and fear of urgency-related accidents6. Although these symptoms can make it more difficult for people with IBD to work, travel and spend time with others, many still find it embarrassing to discuss their symptoms with their families and even their healthcare providers.
Organizations like the Crohn’s & Colitis Foundation strive to reduce the stigma around IBD in an effort to make conversations about bowel urgency easier. “Despite the embarrassing symptoms and often acute pain, IBD is all too often invisible, as people living with the disease can look healthy. This can make them feel misunderstood and unsupported,” said Laura Wingate, Executive Vice President, Education, Support, & Advocacy at the Foundation. “We want to ensure all people living with these conditions feel educated and empowered to discuss their most stress-inducing and embarrassing symptoms openly.”
Resources to Help You Take Control of Your Disease
For people living with UC, the stress and anxiety of urgency-related accidents can take a toll on their well-being. “It can make focusing on your job or getting things done really difficult,” Sophia said. “It’s common to be pulled away from whatever you might be working on to use the restroom.”
While the symptoms of UC can be difficult both physically and emotionally, there are resources to help people with IBD take control of their disease. The Foundation works with municipalities and business owners across the United States to promote the Open Restrooms Movement, which encourages local establishments to allow public access to restrooms. As a part of this movement, the Foundation has created a mobile app called “We Can’t Wait” that locates publicly accessible bathrooms and identifies sympathetic establishments in the event of an unexpected or urgent need to find a restroom.
“We are committed to raising awareness of how the debilitating symptoms of ulcerative colitis, such as bowel urgency, can impact one’s overall emotional well-being,” said Wingate. “With findings from the CONFIDE study further emphasizing the burden people living with IBD face, we encourage everyone to become self-advocates and learn more about the impact of these symptoms.”
From Sophia’s experience, being open and honest with her healthcare team about her feelings and symptoms has been an empowering step in her disease journey. “Take control of the conversation,” she says. “Your medical team has heard it all, seen it all and smelled it all. Your ulcerative colitis doesn’t have to be – and shouldn’t be – a secret.”
For more information, visit Lilly’s website, Let’s Talk Urgency, which provides specific resources on bowel urgency and tools to inspire better dialogue between patients and healthcare providers.
More information on the CONFIDE Study can be found at Lilly.com.
- Alatab, S., Sepanlou, S. G., Ikuta, K., et al. (2020). The global, regional, and national burden of inflammatory bowel disease in 195 countries and territories, 1990–2017: a systematic analysis for the Global Burden of Disease Study 2017. The Lancet gastroenterology & hepatology, 5(1), 17-30.
- Newton L, Randall JA, Hunter T, et al. A qualitative study exploring the health-related quality of life and symptomatic experiences of adults and adolescents with ulcerative colitis. J Patient Rep Outcomes. 2019;3(1):66. doi:10.1186/s41687-019-0154-x.
- Buchmann P, Kolb E, Alexander-Williams J. Pathogenesis of urgency in defaecation in Crohn’s disease. Digestion. 1981;22:310-316.
- Petryszyn PW, Paradowski L. Stool patterns and symptoms of disordered anorectal function in patients with inflammatory bowel diseases. Adv Clin Exp Med. 2018;27(6):813-818.
- US Department of Health and Human Services, US Food and Drug Administration, Center for Drug Evaluation and Research. Ulcerative Colitis: Clinical Trial Endpoints. Guidance for Industry [Draft Guidance]. Rockville, MD: US Food and Drug Administration; 2016.
- Schreiber S et al. UEGW 2022 Poster presentation #963
- Dibley L, Norton C. Experiences of fecal incontinence in people with inflammatory bowel disease: self-reported experiences among a community sample. Inflamm Bowel Dis. 2013; 19(7):1450-1462. doi:10.1097.MIB.0b013e318281327f
- Carpio D, López-Sanromán A, Calvet X, et al. Perception of disease burden and treatment satisfaction in patients with ulcerative colitis from outpatient clinics in Spain: UC-LIFE survey. Eur J Gastroenterol Hepatol. 2016;28(9):1056-1064. doi:10.1097/MEG.0000000000000658