“I’m so sorry, honey,” I said. “I feel really, really bad.” And I did. I was on the verge of tears, as much out of pity and shame as out of motherly concern.
Eli shook his head. “It’s okay, mom. It’s not your fault.”
But it was. Because of me – or, to be precise, my digestive system – we wouldn’t eat until we got to Amarillo, TX at 10 p.m. and bought some frozen food at a grocery store near our Airbnb.
My instinct is not a carefree traveler. Ingest the wrong items and I feel like someone scrubbed it with a Brillo pad. Over the next few hours, I may also experience migraines, joint pain, and a foggy, feverish feeling like I have the flu. My doctors call it irritable bowel syndrome, or IBS. I call it a terrible shame.
IBS is an exclusionary diagnosis, a so-called functional disorder entered into your record only after each test and exam has returned to normal. Simply put, there is nothing wrong with my stomach that our current medical tools can detect. Some doctors and researchers have described this condition in terms of the mind-gut connection.
“Everyone has intestinal contractions,” said Dr. Emeran Mayer, gastroenterologist at the University of California Los Angeles and author of “The Mind-Gut Connection: How the Hidden Conversation Within Our Bodies Impacts Our Mood, Our Choices and Our Overall Health.
The same contractions that go unnoticed by most people cause pain in patients with IBS, who have become hypersensitive to sensations in their intestines, he said. Calm the mind, the thought goes away and the guts can follow.
Right or wrong, I hear this prescription and I’m like, “Oh, so this is all in my head?” So I’m afraid my stomach aches are my fault, the product of an anxious mind that I can’t tame into submission.
That night on the highway, I kept wanting to apologize to my son again. But as Eli turned on the headlights, I realized that he accepted me for who I was. And I asked myself, what if I could too?
My IBS journey began about nine years ago, at the age of 44, when I noticed that my migraines – for decades reliably linked to my menstrual cycle – were accompanied by a sour stomach, like if my gut sucked lemons. Eliminating gluten has helped me, but over the years my gut has continued to deteriorate.
I later learned that my experience is not unusual. Studies suggest that female sex hormones modulate the brain-gut connection, and as these hormones decrease, women may experience more severe symptoms of IBS.
Eventually I lost 10 pounds because the eating had become so painful. That’s why, in 2015, I landed in the office of a gastroenterologist. He did a bunch of tests – blood, oscilloscopes – and when it all came back negative he diagnosed me with IBS.
It could have started with a past infection, he said. The recent stresses in my life probably haven’t helped. He had no way to cure me, but he advised me to relax more and manage my diet.
If my IBS was triggered by stress, I would think, “I must be the most neurotic person I know. Such thoughts did not help calm me down. But it became my new goal: to relax so that my stomach does not hurt anymore.
I would download a new meditation app, try another therapist, or attend restorative yoga classes. My list of restricted foods continued to grow, however – more dairy, soy, alcohol, peanuts, garlic, beans or lentils. I avoided wine and cheese gatherings and scoured the ingredients on packaging and menus. When I stayed away from problematic foods, my stomach felt better.
If I decided to be calmer and started to let go of my strict diet, I would be miserable again. When I asked Mayer why no calming dose would allow me to eat gluten or garlic without pain, he warned me not to underestimate the power of fear.
“It’s a very common thing in IBS patients,” he said. He added that the system of a patient with IBS “viewed food as a potentially dangerous thing.”
Then in August, on that same trip with Eli, I read a new theory about IBS. An article published in the New England Journal of Medicine hypothesized that an abdominal infection could temporarily disrupt the cell barrier that lines the colon. When the barrier is disrupted, allergenic proteins can be absorbed by the colon, triggering localized allergic reactions to certain inflammatory foods like gluten and causing reverberations in the digestive tract.
I’ve been telling people for years that I don’t have allergies to certain foods, even though my body’s response to those foods seemed automatic. Now that research seemed to indicate that what I was feeling could be an allergic reaction – a reaction that no amount of hypnotherapy or journaling was going to make go away.
When I read this, scrolling through my phone at an Illinois motel, I thought, I knew it. The throbbing stomach pains that woke me up at 3 am after eating garlic or black beans were not due to my subconscious; it was my damaged gut.
I later called Dr. Marc E Rothenberg, one of the article’s authors and director of the Allergy and Immunology Division at Cincinnati Children’s Hospital Medical Center, for clarity.
“Stress alters and can exacerbate the underlying physiology of the disease,” Rothenberg said. “But stress is not the cause of IBS.”
There is an exhaustion that comes from years of trying to make something go away that insists on hanging around. These days I am a little less tired from the struggle and a little more at peace with my body. I have finally come to the conclusion that suits me: my instinct is different from that of others.
Every now and then I still try new remedies to improve digestion or better manage anxiety: a probiotic, Chinese herbs, a new meditation app. But if I’m never able to eat another grilled cheese sandwich (milk cheese, wheat bread, real butter), I can live with that. And it is the most relaxing mantra there is.
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