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A person struggling to hold up intestines on their back with text that reads “Crohn’s Disease in America 2019.”

Crohn’s Disease: Symptoms, Flares, and Management

1,000 people with Crohn’s disease recently shared their experiences in our 2019 IBD In America survey. Respondents opened up about their diagnosis journey, symptoms, flares, treatment experiences, relationships with their doctor, management of the condition, coping strategies, and so much more.

Crohn’s severity and frequency

A majority of patients perceive their Crohn’s to be moderate (54%) or severe (36%). Flares are very common, with 39% of patients reporting over 5 flares in the past year. For those who have had at least one flare in the past year, 37% have lasted between one week to one month. For some, flares carry on far beyond that. Regardless of if they are in a flare or not, many respondents experienced daily pain and many also experience symptoms for 15 or more days a month.

39% have over 5 flares in the past year, 42% experience pain daily, and 49% experience symptoms over 15 days a month.

Symptoms and diagnosis of Crohn’s

For 65% of those with Crohn’s disease who took the survey, symptoms began before the age of 25, but only 43% were diagnosed before the age of 25. For respondents, the average time between symptom onset and diagnosis was 7 years. Additionally, 59% were misdiagnosed before receiving a diagnosis of Crohn’s disease.

Top symptoms include fatigue, cramps/pain, joint pain, urgent need to move bowels, bloating, and fullness in abdomen.

The diagnosis process is described as frustrating, depressing, overwhelming, confusing, scary, and as a relief when symptoms are causing pain and interfering with daily life.

Quote from a community member describing the exhaustion, frustration, and fatigue of the diagnosis process.

Treatment and management of the condition

Surgery is common in patients with Crohn’s disease and 62% of respondents have had surgery to treat their Crohn’s. Even with surgery, medication is needed and 61% of those who took the survey are currently using a biologic or JAK inhibitor. Patients use different management techniques for Crohn’s in addition to prescription medications. This includes diet strategies to improve symptoms.

Strategies to improve symptoms include hydration, eating smaller meals, and avoiding trigger foods, alcohol, and spicy foods.

During a flare-up, symptoms are intensified and additional strategies are used to cope with flares.

Tactics for coping with flares are avoiding certain foods, smaller meals, binging TV shows, vitamins, and online support.

The IBD in America 2019 survey was conducted online from February through June of 2019. Of the 1,705 people who completed the survey, 1,000 were diagnosed with Crohn’s disease or Crohn’s colitis, 490 were diagnosed with ulcerative colitis, and 215 were diagnosed with other types of IBD (Indeterminate colitis, microscopic, lymphocytic, or collagenous colitis).

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Shawn Bethea moderator
    4 weeks ago

    I absolutely LOVE the art featured in this post! – Shawn, CD-IBD Team Member

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