Taking Back Control of Her Life
Aug 02, 2018 Cedars-Sinai Staff
The painful symptoms of irritable bowel syndrome (IBS) are caused by bacteria in the gut. Some patients are still told it's all in their heads.
"Doctors say you have IBS because you're crazy," says Ashley Walkley. "No. IBS makes you crazy, because all you think about 24-7 is food, the bathroom, and your stomach. That's all you think about all day, every day."
"It was the first time I felt validated. I wasn't crazy. There was a test that told me something was wrong. It wasn't in my head. It wasn't just stress."
For many years, doctors blamed the brain for the gut problems linked to irritable bowel syndrome, calling it a psychological condition. Recent science has since shown it's bacteria, and not anxiety or depression, that's the source of the problem.
Ashley was diagnosed with IBS in 2015. First, she suffered through 7 years of chronic bloating, pain, diarrhea, and other symptoms that affected every aspect of her life.
In 2008, Ashley had just moved to Santa Monica to be the marketing manager for a major real estate project. It was an exciting step forward in her career, with lots of responsibility and the long hours to match. When she started to have cramping, bloating, and no appetite, she first blamed diet sodas. So, she quit them.
The symptoms didn't quit, though, and soon she was exhausted and frequently dashing for the bathroom. She thought maybe stress was the problem.
By March 2009, she barely ate. Diarrhea and migraines disrupted every day. Her focus at work suffered. She was too sick to continue her workouts and hangouts with friends—activities she dearly loved. Her weight dropped to an emaciating 111 pounds on her 5'9'' frame.
She first saw her primary care doctor, then sought help from a gastroenterologist. They tried many tests to determine what was wrong: CT scan, stool samples, endoscopy, pill camera endoscopy, colonoscopy, and esophageal manometry, a test in which a catheter was threaded through her nose and down to her stomach.
She tried eliminating gluten from her diet. Taking probiotics. Taking heartburn medications. A primary care doctor suggested yoga twice a week might cure her stomach woes—a suggestion that seemed so outrageous given the seriousness of her problems that she found a new doctor instead.
She continued with her gastroenterologist and would sometimes manage to feel better for weeks or a couple months at a time, but no lasting relief. In 2014, her doctor felt they'd run out of options, and referred her to Cedars-Sinai. A breath test found signs of small intestinal bacterial overgrowth, or SIBO, and Cedars-Sinai had expertise in treating the condition.
Advances in research
While Ashley was trying to get to the source of her problems, Mark Pimentel, MD, a gastroenterologist and executive director of the Medically Associated Science and Technology Program at Cedars-Sinai, was trying to unravel the cause of Irritable Bowel Syndrome (IBS).
He published multiple studies linking the condition to bacterial overgrowth. He conducted successful clinical trials showing that an antibiotic that stays only in the gut could improve symptoms and provide lasting relief. This was a major breakthrough for patients with the condition—a treatment that made them feel better and stay better for a sustained period of time.
That antibiotic, rifaximin, is now FDA-approved to treat IBS. Later studies explained the nerve damage that contributes to IBS and that many cases can be traced to food poisoning.
"While I was going through all this, Dr. Pimentel was making the scientific discoveries to figure it out," she says.
Research and treatment come together for Ashley
When Ashley had her first appointment with Pimentel, he could tell her with confidence—based on her medical history and symptoms—that she has IBS-D, the diarrhea-prominent form of IBS. Then, he confirmed his diagnosis with a new blood test he and his colleagues developed, called IBSchek.
"It was the first time I felt validated," Ashley says. "I wasn't crazy. There was a test that told me something was wrong. It wasn't in my head. It wasn't just stress."
She now sticks to a careful diet low in sugars and other foods she finds trigger her symptoms. She was treated with rifaximin, the antibiotic Pimentel studied, and it worked. She has continued treatment with the antibiotic once or twice a year when her symptoms flare badly.
Ashley used to skip going to the beach because there wasn't a bathroom close enough for comfort. Now she's taken her dream trip: camping at Havasu Falls. She and her friends hiked 36 miles over the course of 4 days and camped 3 nights.
"I'm not afraid anymore, and that's the difference," she says.
Ashley has spoken at conferences about her experience, as well as on social media. She doesn't want the condition to be stigmatized.
"So many people are afraid to say, 'I've had the runs for 2 weeks,'" she says. "They're scared to bring it up, and they're scared they're going to be dismissed."
More than 60 million people have IBS, and 70% of them are women. You're not alone, Ashley says, so keep talking to your doctor.