Kate Kareha keeps a folder in her attic filled with notes, doctor’s appointment summaries, photocopies of books, and flyers about inflammation. She also has a saved email with her medication history, the supplements and herbs she takes, and diet info, as well as details about the emotional side of a Crohn’s disease diagnosis. She sends it to friends suffering from gastrointestinal symptoms to give them an idea of where to start. She knows that if they’ve got a form of inflammatory bowel disease (IBD), like Crohn’s, the road to remission can be long and winding.
Kareha, 41, started experiencing symptoms of Crohn’s disease more than a decade ago, during her first pregnancy. (Though, she says, looking back, she realizes she may have started having symptoms as a child.) She and her doctor originally chalked up the blood in her stool to the hemorrhoids, which are common in pregnancy, but six months after she gave birth, the blood returned.
Her doctor recommended a colonoscopy, and after seeing the results, diagnosed her with ulcerative colitis, one of the two main types of IBD. She later learned that in addition to inflammation in the lining of the colon, she had inflammation in other areas of her digestive tract, which changed her diagnosis to the other type of IBD: Crohn’s disease.
The Struggle to Get an IBD Diagnosis
About 2.4 to 3.1 million U.S. adults live with IBD. This is different from irritable bowel syndrome (IBS), which also causes disturbances in bowel function but doesn’t trigger inflammation.
One survey of Crohn’s patients found that for 70% of patients, the delay in diagnosis could span more than a year, while another survey showed the median time from onset of symptoms to diagnosis for ulcerative colitis was two years. Research also shows a delay in diagnosis can increase risk of complications.
“The lag time between when symptoms start and an accurate diagnosis is usually because the clinician doesn’t think of it at first,” says David Rubin, M.D., director of the Inflammatory Bowel Disease Center at University of Chicago Medicine. Many patients with stomachaches, urgency, diarrhea, or constipation will first get a diagnosis of IBS, hemorrhoids, anxiety, or stress. For women, the Crohn’s symptom of anemia (a lack of healthy red blood cells) is often chalked up to menstruation.
Experts add that some women tend to play down their symptoms when talking to their doctor. Brooke Abbott, 42, gets that: She assumed the extreme fatigue she experienced for two years (along with bowel issues) was due to her busy schedule. When she got so tired that she passed out one day, a doctor recommended a colonoscopy, which revealed inflammation. She was diagnosed with ulcerative colitis.
Abbott blogs about living with IBD in The Crazy Creole Mommy Chronicles, and she also co-created the online community IBDmoms.
Don’t be shy about discussing your GI problems with your doctor, no matter how “icky” they may seem. “Some people don’t like to talk about diarrhea or constipation, but being honest with your physician or your gastroenterologist is really helpful,” says Laura Wingate, chief education, support, and advocacy officer for the Crohn’s and Colitis Foundation.
Once your doctor knows to look for IBD and performs the proper tests, including a colonoscopy with biopsies and additional imaging, making a diagnosis is relatively straightforward, Dr. Rubin says.
The Difference Between IBS and IBD
Irritable bowel syndrome (IBS) is more common than inflammatory bowel disease (IBD), affecting an estimated 6% of the U.S. adult population, according to a survey by Cedars-Sinai.
The main difference is that IBS involves how the brain communicates with the gut, says Anne Mary Montero, Ph.D., a licensed clinical psychologist and an associate professor of medicine at Indiana University School of Medicine. IBD is characterized by inflammation and may be related to the immune system.
But IBS is not purely psychological, says Kirsten Tillisch, M.D., chief of integrative medicine at the Greater Los Angeles VA. “The brain fine-tunes the gut’s behavior, so when there’s a disorder of that brain-gut interaction, the gut might be hyperactive in response to experiences, thoughts, or emotions.”
Another difference is that while IBD will typically show up on an endoscopy, a colonoscopy, or a biopsy, IBS will not—which can be very frustrating in terms of zeroing in on a diagnosis. “The gut looks fine. It can absorb, it can move things through, but it can do it too fast or too slowly,” Dr. Tillisch says.
To figure out what’s going on, a doctor will do a full physical exam and health history and look for IBD red flags. If there are none but the person has pain on a weekly basis (not just a few times a year), it’s likely IBS, Dr. Tillisch says. A doctor may also test for small intestinal bacterial overgrowth (SIBO), another common gut issue with symptoms similar to those of IBS, says Nisha Chellam, M.D., an internal, integrative, and functional medicine physician at Parsley Health.
Researchers don’t know what causes IBS, but risk factors include changes in gut bacteria and antibiotic use (which may also play a role in IBD); chronic stress; a diet with many highly processed foods; and a family history of the condition, says Dr. Tillisch. It’s also associated with trauma-related events in early life and anxiety, says Montero.
It’s important to know that you don’t have to just live with IBS—a range of medications can help, and dietary changes as well as mind-body techniques are also very helpful for many people, says Dr. Tillisch.
Finding the Right Treatment
After Kareha received her initial colitis diagnosis, her condition got worse. She’d spend hours in the bathroom, unable to leave her house so she could stay close to it. Two years after she first saw blood in her stool, she started taking steroids and finally found some relief.
“When you’ve been dealing with these symptoms for years—the relief felt like heaven,” Kareha says. “It was like this veil had been lifted, and I thought, OK, I’m back. I can figure this out.” She soon began working with an herbalist to address the inflammation, and after starting a regimen of both Eastern and Western treatments, she went into remission.
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Determining the best long-term treatment for IBD depends on how sick the patient is, as well as on the location of the inflammation, says Dr. Rubin. While a steroid can help get the inflammation under control, it shouldn’t become a maintenance drug, says Reezwana Chowdhury, M.D., an assistant professor in the division of gastroenterology and hepatology at Johns Hopkins University.
Amy Btiebet-Washington, 40, who lives with Crohn’s disease and serves as the senior executive director of the Crohn’s and Colitis Foundation Northern Ohio chapter, started with a steroid and eventually went on a biologic.
“The most important thing from [a doctor’s] standpoint is to bring the inflammation down, because having inflammation can put you at higher risk of colon cancer,” Dr. Chowdhury says. Biologics come from antibodies created in a lab to help stop proteins from causing inflammation.
When you discuss potential treatments with your doctor, Wingate and Dr. Chowdhury advise asking these questions:
- What is the range of treatment options available to me?
- What are the side effects of each one?
- Can we talk about specific treatment goals and outcomes?
- If you plan to have children in the future: How will my disease or this treatment affect my fertility?
Staying in Remission
Finding a doctor who takes your concerns seriously is critical. Abbott found a doctor who not only listened to her, but helped put together a care team, including a rheumatologist, an endocrinologist, and a gynecologist.
“[My doctor] said, ‘We’re going to get your whole body fixed, and we’re going to make sure you can go and do the things you want to do, like coach and travel and advocate and be the mom you were meant to be,’” Abbott recalls.
While there’s no cure for IBD and the exact causes of it are uncertain (genetics and environmental factors likely play a role), researchers continue to investigate the disease and why the number of sufferers is rising not just in the U.S., but globally.
“My thinking for the future is that we use anti-inflammatory treatment to get patients into remission and then switch to non-immune-modifying but microbiome-based treatments—but we’re not there yet,” Dr. Rubin says.
Still, there’s cause for optimism, he says: “We’ve made progress in monitoring the disease; we can measure inflammation in the bowel with stool tests, and there are even now at-home tests. All these things can change the trajectory of the disease.”
How to Keep Your Gut Healthy
Move Your Body
Exercising regularly promotes a diverse set of bacteria in the gut, which improves gut health overall. One research review suggests yoga as a complement to medical care for control of IBS symptoms. Other research points to 30 to 60 minutes of cardio exercise three days a week at a moderate to vigorous intensity.
Manage Stress
“Your gut is your second brain,” says Dr. Chellam. If your stress levels skyrocket or you experience anxiety or depression, that can lead to gut issues.
To help manage stress, Montero suggests deep breathing and swapping helpful thoughts for unhelpful ones. For example, when you experience GI symptoms, consider that a signal to slow down and train your gut to counter stress so you can avoid panicking about needing to run to the bathroom, which increases urgency.
Eat Diverse Foods
To support your gut microbiota (the mix of bacteria in your gut), munch on a wide variety of plants, says Dr. Tillisch. This promotes a healthy lineup of bacteria and varies the sources of those bacteria.
As for oft-touted probiotic supplements, Dr. Tillisch says that research hasn’t really proven their worth, so while they’re probably not harmful, they may not help as much as dietary changes will.
Focus on Fiber and Fat
Fiber, which you can find in foods like avocado, raspberries, and oats, keeps things moving through the digestive tract. Fat, particularly short-chain fatty acids and butyric acid, which is found in dark leafy greens, helps line and protect the gut, Dr. Chellam says. When reaching for fat-rich foods, choose grass-fed dairy products and nuts.
This article originally appeared in the September 2021 issue of Prevention.
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