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Urgency—you probably walk with it, send emails asking for it, and hope your favorite quarterback hustles with it during the two-minute drill. But it isn’t something that you want to connect with going to the bathroom.

When your regular restroom habits become increasingly more frequent, it may be a lingering and ever-present concern. Reaching a bathroom becomes a critical factor between having an accident or not, and can be the center of every decision—from choosing a commuting route to deciding on social plans, says Laura Wingate, executive vice president of education, support, and advocacy at The Crohn’s & Colitis Foundation.

What’s more: It’s a signal that something may not be quite right.

Why you shouldn’t blow off that gotta-go feeling

Bowel urgency could be a sign that you are one of the approximately 7 million people globally living with inflammatory bowel disease (IBD), like Crohn’s disease or ulcerative colitis (UC). These conditions come with a host of symptoms, including persistent diarrhea, abdominal pain, rectal bleeding, and frequent and urgent bowel movements. And according to the CONFIDE Study—a global survey of more than 800 healthcare professionals and more than 1,600 adults living with IBD sponsored by the pharmaceutical company Lilly—bowel urgency can play an outsized role in daily life for those living with IBD.

“[Bowel] urgency is often overlooked in IBD, yet it can have significant effects on every part of your life,” said Karthik Garapati, M.D., an Austin-based gastroenterologist specializing in inflammatory bowel disease. “The unpredictability of IBD can make everyday life very challenging, particularly when symptoms are untreated and causing anxiety as a result.”

Check out The Crohn’s & Colitis Foundation’s Restroom Finder app to find the nearest restroom. The app offers patients—and all app users—a simple way to locate publicly accessible restrooms and helps identify sympathetic establishments.

Anxiety and fear can make you more isolated, particularly if you opt out of social events or intimate relationships, Wingate adds. You may be limited in how and where you work because of difficulties related to that bowel urgency. In fact, according to Lilly’s CONFIDE Study, more than 75% of female patients and more than 50% of male patients surveyed in the U.S. reported avoiding or decreasing sexual activity due to their moderately-to-severely active UC, with bowel urgency reported as the top reason for this impact.

At that point, it may be affecting your quality of life and the more that you just rely on strategies like putting together ‘go bags,’ and constantly having to know where public bathrooms are located only address the immediate situation. “When this happens, you’re at higher risk for stress and depression, and that can have devastating consequences,” Wingate says. “Also, this doesn’t just impact the person with IBD, it can impact the whole family.”

That’s when you need to seek medical help. Bowel urgency is a common symptom of conditions like Crohn’s disease and UC. You need to bring these issues to the attention of your healthcare provider—whether you have been diagnosed with IBD or not. Especially since the CONFIDE Study found that doctors don’t ask about bowel urgency enough. On the flip side, it found that bowel urgency was ranked as one of the top three symptoms reported by patients living with IBD.

“The findings provide evidence of what many patients have been feeling for years,” says CONFIDE Study author Marla Dubinsky, M.D., co-director of the Susan and Leonard Feinstein Clinical IBD Center at Mount Sinai Hospital in New York, “and that’s fear. Carrying a diaper or having a ‘go bag’ with clean clothes at all times comes with fear of bowel urgency.” Another major aspect of the research is that it sheds light on why better dialogue is needed between patients and providers.

“This is a very important problem that the CONFIDE Study uncovered, the idea that there’s a disconnect between what providers ask about and what patients want to be talking about,” Dr. Dubinsky says.

Here’s your talking points memo

Schedule that doctor’s appointment and come prepared to talk. Dr. Garapati acknowledges that talking about bowel urgency can be difficult, so use the following tips and advice on the Let’s Talk Urgency website to boost your confidence and to get comfortable speaking about the subject:

Leading up to your appointment:

  • Write down how bowel urgency is impacting your life. Dr. Dubinsky always asks her patients about whether they experience bowel urgency. But it wasn’t until 50% of the CONFIDE participants responded that it makes them either carry a diaper or wear one, that she understood that not enough doctors are asking their patients about what they do to manage this symptom. By writing it down, you won’t miss a detail. In addition, if you are uncomfortable talking to your doctor, it gives you the opportunity to show your healthcare provider what you are experiencing and help open the conversation.
  • Keep a “stool diary.” Record not just the number of bowel movements but their consistency in the weeks leading up to your appointment. You may also want to write down what you ate and any other activities you participated in.
  • Discuss the issue with friends and family who love and support you, Wingate says. Not only can these conversations clue them in on what’s going on, but they can also serve as practice for talking candidly with your doctor. Taking charge in this way can build confidence.

During your appointment:

  • Be specific about how youre experiencing your symptoms. This is done by explaining how quickly the feeling of urgently needing to use the bathroom comes on and any accidents you may have experienced, Dr. Dubinsky says. Other symptoms like diarrhea, abdominal pain, or rectal bleeding should also be explained to your doctor.
  • Describe what you’re feeling and experiencing. Dr. Garapati says it’s helpful for a doctor to know how your symptoms are affecting your daily activities and your mood.
  • Ask questions about what can be done to manage bowel urgency. For example, if you’re running to the bathroom 20 times per month, what’s a realistic goal for improvement? Having this conversation could help lead to meaningful treatment options.

“One of the best outcomes from the CONFIDE Study would be that people with IBD understand that bowel urgency isn’t something to be embarrassed about, especially when speaking with your doctor,” says Wingate. “Urgency is one of the most important symptoms that people with IBD want fixed,” Dr. Dubinsky adds. “Making everyone aware of this issue is mission critical.”

Learn more about the impact of bowel urgency at LetsTalkUrgency.com, which offers tools to start a discussion with your healthcare provider, facts about ulcerative colitis, and other resources.

Dr. Dubinsky serves as an advisor to the CONFIDE Study and is a paid consultant for Eli Lilly and Company.

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