Life with IBD Is Frustrating: Here’s Why

We surveyed Bezzy forum members to find out what’s most challenging about living with IBD. The unpredictable nature of flares topped the list.

Whether you live with Crohn’s disease or ulcerative colitis, no two people experience inflammatory bowel disease (IBD) in exactly the same way.

Some people’s symptoms are limited to their digestive tract, while others may find that the inflammation that affects their gut also causes symptoms in their joints, skin, eyes, or other body parts.

Moreover, some people may go for long times without symptoms, while others experience more frequent flares.

But because the differences among people are so variable, we wanted to know what Bezzy readers find the most frustrating about living with IBD.

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Unpredictability of flares

As it turns out, the number one answer we received was the unpredictability of how or when an IBD flare appears.

BezzyIBD user KamuiMintara said that for them, it’s “the uncertainty of how I’ll feel each day. Most days, I feel good, but a bad day can come out of the blue.”

Similarly, a forum member with the username Sparklepoop said they feel frustrated by “never knowing how/when/where bowel urgency will occur.”

NancyV and an anonymous user also mentioned the unpredictability of flares.

This uncertainty can lead to feelings of stress and loss of control. BezzyIBD guide Alexa Federico offers some tips for dealing with these emotional consequences. Among them are using affirmations and other mindfulness tools, prioritizing your nutritional health, and contacting your support system.

Tracking down toilets

Bezzy members also feel frustrated by having to plan their lives around restroom availability. The difficulty is severe sometimes, forcing people to stay home rather than socialize or go to an office job because they need a bathroom so frequently and urgently.

Others find that it just becomes a consideration anytime they plan an outing, or as Melissa G put it, “always needing a bathroom nearby.”

Sometimes, even when you find a bathroom in a public place, proprietors will try to tell you that it’s for paying customers only. Rather than feeling like you need to purchase lattes all day long, remind shop owners about Ally’s Law (aka the Restroom Access Law). This law passed in 2005 and is in force in 20 states in the United States. The law requires retail establishments with two or more people working to allow you to use an employee-only bathroom if you present a document signed by your doctor. Many states allow this document to take the form of an “I Can’t Wait” card issued by the Crohn’s & Colitis Foundation.

As Anne Ostermeier pointed out, however, even when you’re able to find a bathroom, “the time spent in the bathroom” in a life with IBD is aggravating. Clearly, that’s the time that most people would prefer to be doing something else.

Jyuhnke said the need for constant restroom availability shows up for them as “never being able to travel without worrying about having a flare-up.” Indeed, the stress of finding a bathroom in an unfamiliar locale sometimes prevents people with IBD from going away on vacation, but it doesn’t have to. With a bit of extra research and planning, some people with IBD have even found travel to be empowering.

The takeaway

The unpredictability of IBD and the need to make plans around easy access to a bathroom can add an extra layer of difficulty to life. These seem to be the top frustrations that BezzyIBD readers encounter, but some have found that planning and techniques for stress reduction can help them overcome these obstacles.