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IBS In America Survey: Ignoring Symptoms, Postponing Diagnosis

We recently conducted a survey asking the community about your experience of living with irritable bowel syndrome (IBS). Many of you began experiencing symptoms at a young age but did not seek a formal diagnosis, believing the symptoms were not serious or unaware they could indicate a chronic health concern. Here is what the 4th Annual IBS In America survey said.

In reflecting back to when your IBS symptoms first began, 34 percent experienced symptoms before the age of 25. The mean age of initial symptoms was 36. More specifically the data showed:

  • 19 percent experienced symptoms before the age of 18
  • 15 percent experienced symptoms at ages 18-24 and ages 24-36
  • 14 percent experienced symptoms at ages 35-44 and ages 45-54
  • 12 recent experienced symptoms between ages 55 and 64
  • 10 percent were 65 or older when first experiencing symptoms

When initial symptoms appeared, what did you do?

Given that the most common symptoms of IBS were abdominal cramping and pain, the urgent need to move bowels, along with gas and bloating, symptoms which do not seem overly concerning (particularly if they first occur before age 25), half of you ignored the symptoms and went on with your life. Other initial thoughts and actions when first experiencing IBS symptoms included:

  • 43 percent tried to treat the symptoms with over-the-counter treatments
  • 33 percent did not think the symptoms were the result of a medical condition
  • 30 percent did not think the symptoms were serious enough to seek medical care
  • 6 percent did not seek treatment due to insurance or financial issues
  • Only 24 percent sought medical care as soon as possible

The process of diagnosis

The process of being diagnosed was often a lengthy one. Nearly three-quarters saw at least 2 health care professionals (HCP) before being diagnosed. Only 28 percent were diagnosed seeing 1 HCP. You all underwent a variety of different diagnostic tests when seeking answers to your symptoms. Most common were:

  • 66 percent had a colonoscopy, where the colon is examined with a camera
  • 62 percent had a detailed discussion of your medical history with your HCP
  • 58 percent had physical exams or underwent clinical observations
  • 45 percent had an endoscopy, where a scope examines the digestive tract
  • 40 percent had a stool sample test
  • 37 percent had blood tests
  • 34 percent had X-rays of the gastrointestinal (GI) tract

Being diagnosed

Since beginning to seek treatment for your symptoms, 90 percent of you have been formally diagnosed with IBS by a health care professional. Over half (54 percent) have had a diagnosis for over 10 years. Other statistics showed:

  • 71 percent of you were diagnosed between the ages of 25 and 64
  • 12 percent were diagnosed between the ages of 18 and 24
  • 11 percent were diagnosed between the ages of 65 and 74
  • 15 percent have been diagnosed less than 2 years and 5 to 10 years
  • 16 percent have been diagnosed for 2 to 5 years

About the people surveyed

Nearly all (95 percent) of those who responded to the survey were women and 91 percent were Caucasian. Half reported having a college degree and 37 percent were employed in some capacity. Just over half reported having an annual income of less than $55,000 a year and 80 percent had health insurance coverage. Other characteristics of those surveyed included:

  • 94 percent have also been diagnosed with an additional chronic illness, the most common (46 percent) being anxiety or a panic disorder.
  • 59 percent are currently married
  • 78 percent live with someone else

Learn more about the 4th Annual IBS In America survey and its results:

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