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What About IBS Pisses You Off the Most?

IBS is so much more than a physical disease. In addition to the diarrhea, cramping, bloating and gas, the anxiety is, as so many of you shared, so much harder to deal with, at times, than the physical symptoms because the anxiety never goes away. If you hate the anxiety the most, you are not alone!

In early March, we asked you on the Facebook page to name what you hate most about the disorder. More than 200 of you commented on what frustrated you the most. Here’s what you had to say about your daily struggle with IBS.

“There is no cure.”

If only there were a medicine available, especially for big days when you’d like to live your life without worry. But a cure isn’t happening just yet, largely because the cause remains unknown. A lot of you shared that you’d been to doctors, but too often, doctors were unable to help in any way. A few of you found solutions, most often over-the-counter pills to manage a variety of symptoms, and one of you mentioned a prescription medication, loperamide, which is helping.

“That there are no medications to relieve the symptoms and/or a cure for IBS!”

“I have seen 8 doctors and every one says, ‘Nothing is wrong.’ I can see how this leads to depression.”

“Never knowing what food will affect me … “

Many of you describe every meal as a game of Russian roulette. There are no safe foods-just foods that happen to not have a consequence on a particular day. Some of you have narrowed down which foods are “nevers” for you, but that’s a disappointment also because it only further limits options, especially when dining out.

“Never knowing what food will affect me one what day. Some days are good and I can eat. Some days everything bothers me and will cause bloating and frequent bathroom trips.”

“I can eat ___________ on, say, Monday, and it not bother me one bit. Then I eat the same exact thing say … on Friday and it will JACK ME UP!!!”

“Not knowing when it will hit.”

With the not knowing comes unending anxiety, which is one of the worst parts. Many of you expressed that it’s hard to fully enjoy a good day, as there’s always at least a slight worry in the back of your mind.

“Explosive diarrhea. Not knowing when/where it will hit. Fear of not making it to the bathroom. Tired of stomach pain and bloating.”

“That we just left my 13-year-old daughter’s opening softball game with her in tears doubled over after she tried so hard to stay in the game as long as she could, and it happens all the time limiting her life. As a parent, this makes me feel helpless.”

“Stops me from going places.”

When a flare hits, it’s hard to have a social life. Many of you admitted that it’s easier to cancel plans that to deal with the headache – on top of the bowel ache – of finding a suitable restroom.

“Always worrying about if I’ll have an attack or break out when I go anywhere. Sucks big time. Stops me from going places sometimes.”

“It’s unpredictability and how it gets worse with time, keeping me in an almost hermit-like existence.”

“How much I missed out on as a teen and when in my early 20s. Too much pain and embarrassment to go on sleepovers and go away to college.”

We want to thank everyone who shared with us. Our hope is that those in the community find strength in the solidarity of this supportive, vocal community.