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IBS Symptoms and Lack of Control

We recently conducted the 5th IBS In America survey. In the survey, we asked the community about experiences living with IBS and feeling a lack of control over symptoms. We learned that only 12 percent of those who took our survey feel their IBS is controlled.

The unpredictable nature of IBS continues for many people despite help from healthcare providers, medication, food tracking, elimination diets, and mindfulness or stress-reduction techniques. This is a big topic in our community and among our advocates. We want you to know you are not alone.

Advocates weigh in on the lack of control

We asked the advocates, Do you feel like your IBS is controlled?

Amy Dodd Pilkington, IBS advocate"My IBS is completely out of control. The older I get, the worse the symptoms seem to be. Things that were somewhat under control are now completely out of control. Fasting is much harder. Things that did not trigger flares suddenly do. IBS is often unpredictable, but it is now more unpredictable than ever. I am blaming some of these changes on age-related hormonal issues and stress associated with these changes." – Amy P.

Shannon Grantham, IBS Advocate"It has never been 'controlled.' I have gone the majority of my life not medicated for IBS-D. This year is the first year I have ever been given medication for it. While, yes, it does help some, the cons with it are I can't take my other medications 2 hours before or after and I have to take it twice a day. When you have other medical issues that require medication you have to pick the ones that are more important. In my case, IBS is something I have learned to live with the best I can." – Shannon G.

Karina Ioffe, IBS Advocate"I used to feel like I could at least predict my IBS symptoms based on what I ate or the situation I was in. But that changed drastically after having a baby. My trigger foods changed, previously effective treatments do not work anymore, and I'm basically back to square one. Now, I get flares that don't make any sense to me at all, even when I'm not stressed and only consumed seemingly safe foods. I do hope that with time, I'll be able to understand my new triggers and get a bit more control of my IBS symptoms." – Karina

Sawyer Matheny, IBS Advocate"My dicyclomine meds are a hit or miss. Sometimes my symptoms are quelled, allowing me to eat food with no consequence. Other times, My IBS persists, consisting of cramps and constipation followed by diarrhea. It feels like my IBS triggers change depending on the day, with limited consistency." – Sawyer

Rate your IBS treatment experience

We also asked these 4 advocates to rate their treatment experience from 1 to 5, with 5 being excellent control. They replied with ratings between 1-3.

Share your experiences

How about you? Do you feel like your IBS symptoms are controlled by your current treatment plan? Share in the comments below or visit our forums.

The 5th IBS In America survey was conducted online from June 8 through August 3, 2020. All of the 1,930 people who completed the survey have been screened for IBS symptoms.

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