Even though irritable bowel syndrome affects between 25 and 45 million people in the United States (and approximately 5% to 10% of people worldwide), it’s still not taken totally seriously. To someone who doesn’t have it, IBS may seem like no big deal — like a run-of-the-mill stomachache.
But for people with IBS, a condition that may present with symptoms of chronic abdominal pain, bloating, diarrhea, constipation or some combination of these, it can quickly become what your entire life revolves around.
“People with IBS are often physically and emotionally exhausted by their symptoms and by repeated efforts to get answers and treatments that could help,” Dr. Lauren Tormey, a gastroenterologist at Dartmouth Hitchcock Medical Center in Lebanon, New Hampshire, told HuffPost. “Not only can it be challenging to make a diagnosis of IBS, but symptoms can change over time, causing confusion and frustration for both patients and doctors.”
This can lead to an all-consuming cycle of avoiding trigger foods, social gatherings that involve food and drinks (so, all of them) and any situations that entail not knowing where the nearest bathroom is — along with the following things only people with IBS would understand:
1. Being so worried you’ll experience gastro symptoms, you make them come true
“I wish I could say having IBS is always in the back of my mind, but truthfully, it’s front and center — all day, every day,” Lauren Schneider, senior PR and communications manager at Compt, told HuffPost. “The only time I’m not worried about it is if I know for a fact I won’t be leaving home that day.”
When we’re stressed about our gut health and anticipate a flare-up or a worsening of symptoms, it sends signals from our brain to our gut, which can actually affect our digestive system. The result? Tightened abdominal muscles, colon spasms and an uptick in discomfort.
“The stress associated with the fear of experiencing IBS symptoms can even result in an inability for the body to properly digest food,” Dr. Vanessa Méndez, a board-certified gastroenterologist and founder of Planted Forward, told HuffPost. “This can lead to bloating and diarrhea or even a slowing down of the digestive system that triggers constipation.”
2. Eating or drinking something spontaneously — and immediately paying for it
With IBS, because of the hyper-responsiveness of the enteric nervous system (the part of the nervous system located in our digestive tract), symptoms can often be unpredictable. This means turning down the chance to try a new menu item at a restaurant, or cocktails at happy hour, so as to not risk an attack of symptoms.
For people who have never dealt with IBS, these boundaries might seem like overkill. But they can mean the difference between enjoying time spent with others, or being so focused on masking your symptoms you miss out on the experience (or spend the bulk of the experience in the bathroom).
“That one scoop of ice cream is enough to make me feel like I’ve had food poisoning,” Abi Cowell, a vegan food blogger, told HuffPost. “Will it kill me like a food allergy would? No. But it will cause an awful lot of pain and misery.”
3. Socializing is filled with mental — and intestinal — anguish
“Having IBS and socializing is filled with emotional landmines, especially when meals are involved,” Lindsay Barnes, media relations manager at Evoke Kyne, told HuffPost.
There’s the frustration of people not understanding that needing to go to the bathroom means you need to go now. The fear of entering the dating world and having to explain why you go so much. The awkwardness when you’re having a good time and suddenly need to make a run to the loo.
“When you just want to sit down and have a normal meal, whether by yourself or with family and friends, these things can be emotionally exhausting,” Tormey said. “The pain experienced by individuals with IBS is in part due to visceral hypersensitivity.”
Visceral hypersensitivity is pain or discomfort coming from internal organs (like those in the abdomen), under circumstances that wouldn’t normally be painful (like eating or during a bowel movement). The nervous system experiences these sensations and communicates them to the brain for processing via the gut-brain connection.
“Food ― eating it, even thinking about it ― regardless of the food type, [it] stimulates normal digestive function and can therefore result in pain in IBS,” Tormey said. “Sometimes eating is accompanied by the immediate urge to have a bowel movement because of a heightened stomach-colon reflex.”
Putting food or fluid in the stomach sends a signal via the nervous system to the colon. The colon understands this as a stimulus to empty whatever waste is there — and doesn’t care if you’re mid-sentence on a first date.
4. Changing so many ingredients in a recipe or food order, it becomes a different meal
The average person can control the effects of what they put into their body, and can adapt to food-centric situations, because their sensitivities to certain foods remain relatively consistent and clear-cut.
“I don’t have that luxury,” Barnes said. “I have absolutely no control over my body anymore — I can be as mindful as possible and work really hard on my diet, but at the end of the day, my gut controls my body now, and not in a good way.”
Food intolerances are common in IBS, and dietary modifications can help manage symptoms for some people. But for others, “visceral hypersensitivity and abnormal gut-brain communication can cause flare-ups to happen anyway, despite watching what you eat,” Tormey said.
“And who knows how long the flareup will last?” Barnes said. “A half hour? Two hours? The rest of the day?”
5. Mapping out where every public bathroom is before you leave the house
When Schneider leaves her home, she’s always planning — always conscientious of where she can find a restroom if she needs to stop. “If I’m going to be driving somewhere without quick access to a bathroom, I won’t eat before my trip,” she said. “I’ll wait until I get there.”
These coping strategies are actually pretty common, and can be a normal response to a situation that’s outside of our comfort zone, even for people who don’t suffer from IBS.
“When anxiety levels are high in a situation such as traveling, your digestive processes can get dysregulated,” Méndez said. “During stress, the brain sends signals to the gut that influences motility and digestion, which can lead to diarrhea or constipation.”
Because the gut is constantly at work, the brain typically filters out the nerve signals it sends (paying attention and responding to some in order to regulate gut activity, while not focusing on others). Normal gut-brain communication can go wrong when something disturbs the nervous system or the brain for a long period of time — like when traveling, working a stressful job or rushing to get errands done.
“In these circumstances, the brain perceives stronger signals from the gut, and even the mildest stomach cramp can immediately trigger the brain to start worrying about the potential for worsening pain or a bowel movement coming on,” Tormey said. “The brain subsequently sends inappropriate signals back that disrupt gut function and can worsen symptoms.”
As a result, you might find yourself doing the same as Schneider: scouting bathrooms on your route or delaying meals.
6. Maintaining excuses for why you’re taking so many bathroom breaks
“Something I want others to understand about how IBS impacts my life is the daily secrecy and diversions that surround my use of the bathroom,” Amanda Dexter, 36, told HuffPost. “There’s a lot of sneaking (multiple) trips to the bathroom or making excuses as to why it took you so long.”
Eating food and having bowel movements are essential to our survival — and across cultures, food is social and often enjoyed and shared with others. But unless you’re potty training a toddler, bowel movements aren’t exactly a typical subject of dinner-table conversation.
“These aspects of daily life pose regular challenges for those with IBS,” Tormey said, and can lead to a loss of enjoyment around food, a fear of eating and even disordered eating habits, such as skipping meals to avoid needing to use the bathroom.
If more people were to open up about their own horror stories, Dexter believes it would help alleviate the unnecessary embarrassment that many people with IBS feel. “Commiseration can go a long way into helping IBS sufferers not feel so alone,” she said.
7. Having flare-ups so exhausting, you need to take the rest of the day off
IBS is a disorder of “dysmotility,” meaning that movement of food, fluid and waste through the gut is altered.
“This leads to irregular bowel habits (diarrhea, constipation or both),” Tormey said. “You might spend a lot of time in the bathroom, either having bowel movements, trying to have a bowel movement or dealing with pain around the time of bowel movements.”
It’s not uncommon for people with IBS to miss days of work or school because of these exhausting, intrusive symptoms ― only to be further stressed out over the resulting lost productivity and wages.
“There have been times where I feel so emotionally drained and frustrated that I’ll just cry in the bathroom,” Barnes said.
8. The relief of knowing you don’t have anywhere to go that day
For Schneider, being able to work from home has alleviated much of the anxiety associated with her condition. She’s able to eat more intuitively and with a bathroom always nearby.
“Work trips are a little difficult, especially when the whole group goes out to dinner,” Schneider said. “That’s when I just resort to my old ways, and either barely eat or only eat my tried-and-true few things that won’t upset my stomach.”
Because IBS symptoms can be intermittent and unpredictable, varying in both nature and severity, the condition can leave you with a great deal of uncertainty and anxiety about what might happen outside the home.
“To compound matters, there’s a well-established recognition that the central nervous system, or brain, also has a significant role in regulating not only gastrointestinal motility, but sensation — from both an unconscious and a higher emotional level,” Dr. Brooks Cash, professor of gastroenterology at the University of Texas McGovern Medical School, told HuffPost.
This typically leads to people with IBS becoming hyper-vigilant about their symptoms, and trying to be as ready for them as possible — including doing everything in their power to avoid potential triggers.
“Sometimes these triggers are absolutely accurate, and other times they’re merely innocent bystanders,” Cash said. “Either way, we often see patients changing their lifestyle, daily activities, diet, habits and social activities for the sake of avoiding them.”
9. Losing count of how often you’ve been told your IBS symptoms are all in your head
Schneider has done what’s recommended to treat IBS. She’s seen doctors, done the tests. The endoscopy and colonoscopy didn’t show anything helpful ― just that she also has gastroesophageal reflux disease.
“I’m on an SSRI, so it isn’t anxiety-related, like one doctor so unhelpfully assumed,” she said. “She literally said to me, ‘Well, nothing’s shown up in your bloodwork or other tests — you have IBS-D but it’s probably all in your head.’ Thanks, super helpful.”
After being poked and prodded enough, Schneider gave up. “I’m tired of advocating [for] myself to doctors who won’t listen and paying co-pays that are essentially a waste of money to hear the same things over and over.”
While doctors don’t have an IBS biomarker to test for, there are formal diagnostic criteria for IBS called the Rome IV criteria.
“To make a diagnosis of IBS, patients should meet Rome IV criteria and not have any other ‘alarming’ signs such as blood in the stool, unintentional weight loss or new onset symptoms over the age of 50 without prior colon cancer screening,” Tormey said.
These criteria must be fulfilled for the past three months, with symptom onset at least six months prior to diagnosis. “IBS should then be sub-classified by the predominant bowel pattern ― such as IBS-C, or IBS with constipation ― which helps guide treatment,” Tormey said.
A diagnosis of IBS can be made confidently after a detailed history, a complete physical exam and a few thoughtfully selected diagnostic tests to evaluate for conditions that can present with similar symptoms.
So if your doctor implies — or straight-up tells you — your symptoms are all in your head, Méndez encourages you to get a second, third or even fourth opinion. “You know they’re not in your head and that IBS is a very real condition,” she said. “In fact, IBS is the most common functional digestive disorder. If you have symptoms, please keep seeking help until you find a health care provider you trust.”