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IBS in America 2017

The Long and Difficult Journey To An IBS Diagnosis

We conducted a large survey of people who have IBS, and asked many questions about what its like living with an illness that is difficult to diagnose and even more complicated to manage. Here are the highlights from what our community shared with us:

Almost 25% of people experienced symptoms before turning 18, but many didn’t seek a formal diagnosis until well into adulthood. Some people chose not to seek a diagnosis at all. When people initially experienced symptoms, many just ignored it, while others didn’t think the symptoms were even serious enough to seek medical attention. 43% took matters into their own hands and tried to treat with over-the-counter medication.

The path to a diagnosis is not an easy one for IBS sufferers, with many (37%) receiving a wrong diagnosis of either GERD, depression, lactose intolerance, stress/anxiety or food allergies. Gastroenterologists were the most common diagnosticians of IBS (61%), followed by primary care physicians (33%). After a diagnosis, many people choose not to continue to see a healthcare provider and here’s why …

After being formally diagnosed with IBS, IBS sufferers expressed a lot of negative feelings. They also wished they had more knowledge about the kind of impact IBS would have on their life. Here’s what they had to say …

IBS isn’t the only condition people have to live with. A vast majority of them have also been diagnosed with other illnesses like migraines, chronic pain and fatigue, sleep disorders, mood disorders and many, many other conditions.


  • Pilgrim
    1 year ago

    I have been suffering severe IBS symptoms for over 2 months, with terrible cramps and spasms continuously, night and day, with no let up at all, with frequent visits to the toilet. I was getting so desperate, I felt I would do anything to get some relief. Foods were a great problem, as just did not want to eat, so had mainly soups and vitamin drinks, but even so, they did not help the situation, only made them worst. I knew my husband was praying for me. Then last night, late, I decided to take the last dose I had in the bottle of kaolin and Morphine, plus I took half a sleeping tablet, in sheer desperation, not a habit I would make at all. I could hardly believe today there has been such a great improvement and my stomach seems to have suddenly calmed down. Yesterday, and previous days, I had continuous heat pads on my stomach, that was all I could do, as no pain medicines were helping at all. Just so sorry that one cannot buy anymore Kaolin with Morphine as it has been banned. How I empathise with all sufferers with this dreadful IBS and the limitations it brings. I had tried so many herbal medications over the years, including doctor’s prescriptions, but nothing seemed to help much at all.

  • Chris Hall moderator
    1 year ago

    Hey, @pilgrim – Nice to hear from you! I’m sorry to hear that your symptoms have been flaring for so long. That’s great that you got some relief yesterday. I hope that’s carried over into today! Appreciate you taking the time to share. – Chris, Team

  • DorisE
    2 years ago

    Very interesting survey results. Thankyou.

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