Landmark Survey Reveals Physical and Emotional Challenges Faced by Patients Living with IBS

AGA Encourages Patients to Speak Up Early, Completely and Often Media

Contact: Aimee Frank
301-941-2620
[email protected]

Bethesda, MD (April 13, 2016) — The American Gastroenterological Association (AGA) today released a new analysis from the landmark “IBS in America” survey, revealing insights into the emotional and physical experiences of patients with irritable bowel syndrome with constipation (IBS-C) and irritable bowel syndrome with diarrhea (IBS-D).  The “IBS in America” survey is the most comprehensive IBS survey ever conducted, polling more than 3,200 sufferers and 300 physicians. According to the new analysis, IBS-C and IBS-D are similar in that both are characterized by recurring abdominal pain and other bothersome symptoms that can interfere with sufferers’ work or school activities nearly half of the weekdays each month. Yet, IBS-C and IBS-D are also different: beyond the obvious physical differences between constipation symptoms and diarrhea symptoms, survey respondents said they struggle with different emotional and social obstacles, such as embarrassment and difficulty planning in IBS-D and depression and avoidance of sex in IBS-C. Additional findings include: Day-to-Day Impact: While IBS-C and IBS-D may be at opposite ends of a spectrum of bowel function, both are characterized by recurring abdominal pain and other bothersome symptoms that can interfere with sufferers’ work or school nearly half of the weekdays each month.

• Approximately half of the survey respondents with IBS-C (53 percent) and IBS-D (50 percent) reported that their symptoms are ‘extremely’ or ‘very’ bothersome,¹ with abdominal pain and altered bowel habits (constipation, urgency) cited as the most bothersome symptoms in both conditions.² 
• On average, survey respondents reported experiencing IBS symptoms that interfered with their productivity at work or school nine days per month,³ and missed an average of two days of work or school per month due to their symptoms.⁴  
• In both IBS-C and IBS-D, nearly two-thirds of the responding sufferers ‘strongly agreed’ or ‘somewhat agreed’ that their symptoms ‘prevent them from enjoying daily activities’ (IBS-C: 66 percent; IBS-D: 65 percent)⁵ and they reported frustration as their most common emotion (IBS-C: 75 percent; IBS-D: 73 percent).⁶  

The IBS-D Experience: The emotional experience of IBS-D is characterized by an inability to predict symptoms that causes embarrassment and ties patients to the bathroom. 

• Forty-seven percent of IBS-D sufferers responding reported that they had ‘little’ or ‘no’ ability to accurately predict their symptoms on a daily basis (vs. 39 percent of IBS-C patients).⁷  
• When asked how IBS affects them, most IBS-D respondents said they avoid situations in which they won’t be near a bathroom (IBS-D: 81percent; IBS-C: 63 percent); they feel embarrassed that others notice they are in the bathroom a lot (IBS-D: 68 percent; IBS-C: 55 percent); and it is difficult to plan things as they never know when their symptoms will act up (IBS-D: 65 percent; IBS-C: 57 percent).⁸  
• Beyond frustration, the emotions most common in these IBS-D sufferers include self-consciousness and embarrassment.⁹

The IBS-C Experience: The emotional experience of IBS-C sufferers is characterized by attempts to self-treat with numerous over-the-counter products, leading to dissatisfaction, frustration and depression.

• IBS-C respondents reported trying more over-the-counter (OTC) products before talking to a doctor than IBS-D sufferers,¹⁰ and they are more likely to be taking two or more types of OTCs each month (IBS-C: 55 percent; IBS-D: 42 percent).¹¹
• Roughly one in three (32 percent) of these IBS-C sufferers reported feeling down, depressed or hopeless because of their condition more than half of the days or nearly every day in the past month [vs. roughly one in four (26 percent) of IBS-D sufferers].¹² 
• When asked how IBS affects them, most of the responding IBS-C patients said they don’t feel normal/don’t feel like themselves (IBS-C: 76 percent; IBS-D: 68 percent) and that they feel self-conscious about how they look (IBS-C: 64 percent; IBS-D: 54 percent). Nearly two-thirds (64 percent) of these IBS-C patients report that they have even ‘avoided having sex’ because of their symptoms (vs. 55 percent of IBS-D patients).¹³

“The data from this analysis serve as an important reminder that IBS is a very real disease and that abdominal and bowel symptoms have a very real impact on patients’ lives. The impact can manifest itself in a variety of ways — physically, socially and emotionally — so it is imperative that patients explain, and physicians seek to understand, each individual’s experience so that they can recommend appropriate treatments,” said Michael Camilleri, MD, AGAF, president of AGA.  Creating a more open and productive dialogue may help to improve treatment for patients suffering from IBS-C and IBS-D. AGA recommends three steps to improve doctor-patient communication:

1. Speak Up Early: Talk to your physician about treatment options if you recognize any IBS symptoms.
2. Speak Up Completely: Provide your physician with specific examples of how your symptoms impact you on an emotional level as well as on a physical level; this will help your physician make a treatment decision that is most appropriate for you.
3. Speak Up Often: Tell your doctor if symptoms return despite treatment efforts so he or she can consider alternate treatment options.

For more information on IBS or the “IBS in America” survey, please visit: http://ibsinamerica.gastro.org/  # # # About IBSA chronic condition estimated to impact some 35 million¹⁴ adult Americans, IBS consists of a constellation of gastrointestinal (GI) symptoms, such as abdominal pain, constipation, diarrhea, gassiness, bloating or cramping. Some people experience IBS with constipation (IBS-C), which is characterized by abdominal pain and difficult or infrequent bowel movements, while others experience IBS with diarrhea (IBS-D), characterized by frequent loose stools or an urgent need to move the bowels. Others alternate between constipation and diarrhea. While IBS cannot be cured, symptoms can be managed. Treatment strategies are based on the nature and severity of symptoms, as well as identification of the disturbance of function, and may include diet or lifestyle modifications, over-the-counter products or prescription medicines. About the Survey The “IBS in America” survey was commissioned by the American Gastroenterological Association and conducted with the financial support of Ironwood Pharmaceuticals, Inc. and Allergan plc. Online surveys were conducted by GfK, a leading market research company, Sept. 14 through Oct. 29, 2015. In total 3,254 IBS sufferers, both diagnosed and undiagnosed, were interviewed, as well as 302 physicians who treat IBS patients — 151 primary care physicians and 151 gastroenterologists. About the AGA InstituteThe American Gastroenterological Association is the trusted voice of the GI community. Founded in 1897, the AGA has grown to include more than 16,000 members from around the globe who are involved in all aspects of the science, practice and advancement of gastroenterology. The AGA Institute administers the practice, research and educational programs of the organization. www.gastro.org. About GfK GfK is the trusted source of relevant market and consumer information that enables its clients to make smarter decisions. More than 13,000 market research experts combine their passion with GfK’s long-standing data science experience. This allows GfK to deliver vital global insights matched with local market intelligence from more than 100 countries. By using innovative technologies and data sciences, GfK turns big data into smart data, enabling its clients to improve their competitive edge and enrich consumers’ experiences and choices. www.gfk.comReferences¹ IBS in America, Consumer Survey, Q2 “Currently, how bothersome are your gastrointestinal symptoms on your quality of life, i.e., work and daily living?” n=3,254² IBS in America, Consumer Survey, Q4 “Which of the following gastrointestinal symptoms are typically most bothersome, 2nd most bothersome and 3rd most bothersome?” IBS-C n=1,684; IBS-D n=1,587.³ IBS in America, Consumer Survey, Q6 “In a typical month, how many days, if any, do these symptoms interfere with your productivity (your ability to perform at work or school)?” n=3,254⁴ IBS in America, Consumer Survey, Q7 “About how many days, if any, in a typical month do you miss work or school because of your gastrointestinal symptoms?”; based upon respondents who answered with a number of days and excluding those who answered “Don’t Know” or “Do not go to work”.  n=1,497⁵ IBS in America, Consumer Survey, Q8 “Please indicate if you strongly agree, somewhat agree, somewhat disagree or strongly disagree with the following statements.” n=3,205⁶ IBS in America, Consumer Survey, Q9 “When YOUR GI symptoms are bothering you how does that make you feel?” n=3,254⁷ IBS in America, Consumer Survey, Q5C “How accurately can you predict whether or not you will experience symptoms today?” n=3,254⁸ IBS in America, Consumer Survey, Q8 “Please indicate if you strongly agree, somewhat agree, somewhat disagree or strongly disagree with the following statements: Avoiding situations where they won’t be near a bathroom [n=3,190]; Feel embarrassed that others notice they are in the bathroom a lot [n=3,032]; Difficult to plan things as they never know when their symptoms will act up [n=3,175]; all analyses based upon respondents who answered with a level of agreement or disagreement and excluding those who answered “Don’t know/Not applicable.⁹ IBS in America, Consumer Survey, Q9 “When YOUR GI symptoms are bothering you how does that make you feel?” n=3,254¹⁰ IBS in America, Consumer Survey, Q20A “Approximately how many over-the-counter medications have you tried? n=2,046¹¹ IBS in America, Consumer Survey, Q20B “Approximately how many over-the-counter medications do you take in an average month to manage your symptoms?” [based upon first answering “Yes” to Before you spoke to a healthcare professional about your GI symptoms, did you try taking any over-the-counter products (i.e. non-prescription products) to manage your symptoms?  n=2,046]¹²IBS in America, Consumer Survey, Q10 “During the past four weeks, have you experienced the following feelings based on your GI symptoms?” [based upon respondents who answered with a level of agreement or disagreement and excluding those who answered “Don’t Know” n=3,092]¹³ IBS in America – Consumer Survey – Q8 “Please indicate if you strongly agree, somewhat agree, somewhat disagree or strongly disagree with the following statements: Don’t feel normal/don’t feel like themselves [n=3,165]; Feel self-conscious about how they look [n=3,101]; Avoided having sex [n=2,783]; all analyses based upon respondents who answered with a level of agreement or disagreement and excluding those who answered “Don’t Know”¹⁴Lieberman GI Patient Landscape survey, 2010