If you commonly experience symptoms such as diarrhea, abdominal pain, weight loss, or fatigue, it may be a sign that you’re one of the million Americans with Crohn’s disease, according to the National Institute of Diabetes and Digestive and Kidney Diseases.
The Mayo Clinic describes the disease as being “characterized by inflammation of the lining of your digestive tract, which often spreads deep into affected tissues,” with symptoms ranging from mild to severe. Frustratingly, a diagnosis may take some time, as the Crohn’s and Colitis Foundation points out that “there is no single test to confirm a Crohn’s diagnosis, and Crohn’s disease symptoms are often similar to other conditions, including bacterial infection.”
That story lines with one woman’s experience: Jamie H. of San Diego, California, was in her mid-20s and a student teacher in graduate school when she first felt something wasn’t right. She says, “I took a trip during winter break to Europe, and that’s when I first noticed I had blood in my stool.”
While concerning, it didn’t initially raise alarm bells for Jamie. Like many people with digestive symptoms, she assumed it might be stress, travel, or something she ate. But when she returned to the classroom, her symptoms worsened—and by the time she’d lost 20 pounds, they were too serious to ignore. What she didn’t expect is that she’d have to manage things on her own for two years before she got a diagnosis, learning that diet alone wasn’t the answer.
How I knew I had Crohn’s disease
As told to Leslie Finlay, MPA
Confusing symptoms with no obvious fix
Jamie’s symptoms didn’t begin all at once—they built gradually, making them easier to dismiss. But after noticing occasional blood in her stool, she started experiencing sharp pains in her sides. “I could barely get through a lesson,” she says. When she brought her concerns to her primary care provider, she was advised to make dietary changes.
“He said maybe you need to add more fiber to your diet, that it could be hemorrhoids,” Jamie says. So she did. She started taking psyllium husk, the fiber in Metamucil, and eating a high-fiber diet. But her discomfort wouldn’t budge. “It was not helping,” she says. “I felt like it was making it worse.”
Over time, eating became something she tried to avoid. She skipped breakfast before work to prevent urgent bathroom trips and relied on bland, easy-to-digest foods. Painful mouth ulcers made eating even more difficult, too.
“This went on for like a year and a half—of me having symptoms, trying dietary changes,” Jamie says. “I started thinking that maybe I [had] Celiac [disease]. I was kind of just going in circles.”
The long road to a diagnosis
With her symptoms progressing despite dietary changes, Jamie eventually went to urgent care. Her bloodwork revealed something more serious. That’s when the doctors saw the inflammation markers, and as she says, “The white blood cell count was, like, through the roof.” She was referred to a gastrointestinal doctor, who ordered a colonoscopy, endoscopy, and biopsy.
“At first [the diagnosis] was indeterminate colitis, because they didn’t know where the disease was,” Jamie explains. It wasn’t until she saw a specialist in inflammatory bowel diseases that she finally got clarity. She says, “Once they found that it was all over my digestive tract, that’s when they said it’s Crohn’s.” At this point, Jamie had been experiencing symptoms for about two years and dropped 20 pounds inadvertantly.
According to Northwestern Medicine Digestive Health Center gastroenterologist Emanuelle Bellaguarda, MD, diagnostic delays like this are common with Crohn’s disease. Early symptoms—such as abdominal pain, fatigue, and changes in bowel habits—can be vague and easily attributed to diet or stress.
“The current data shows that it can sometimes take 10 years between the onset of inflammation and the development of symptoms,” Dr. Bellaguarda explains. “It is not uncommon for patients to spend a lot of time and effort researching and managing their symptoms with dietary interventions.” Often, she says, a diagnosis doesn’t happen until symptoms become severe, such as persistent pain, continued weight loss, or blood in the stool.
Why Crohn’s isn’t just a “diet problem”
Crohn’s disease is a chronic inflammatory bowel disease that can affect any part of the digestive tract and cause symptoms like abdominal pain, diarrhea, fatigue, and weight loss, Dr. Bellaguarda explains. Diet can help manage certain symptoms for some people, she says, but it doesn’t address the underlying cause: an overactive immune response that drives harmful gut inflammation.
If left untreated, Crohn’s disease can cause serious complications, including bowel damage. “Untreated inflammation in the bowel can also increase the risk for precancerous cells called dysplasia that can progress to colon cancer,” adds Dr. Bellaguarda.
Still, Jamie’s experience reflects what Dr. Bellaguarda says is a common misconception—that all digestive symptoms can be solved with “clean eating” alone. While a healthy diet does support overall gut health, it can’t heal ulcers or stop chronic diseases from getting worse. With Crohn’s, medical treatment is essential, Dr. Bellaguarda says.
Living with Crohn’s—and what she wishes others knew
“There’s no cure for this disease,” Jamie says. “It’s just about how to manage it.”
Dr. Bellaguarda agrees, saying that excellent and effective therapies to treat Crohn’s exist, but treatment is very individualized based on what organs it affects, their symptoms, and severity. And sometimes it can take some trial-and-error to find the right approach. Dr. Bellaguarda says, “I also want to emphasize that the earlier we start patients on effective therapies, the higher the likelihood we will be able to heal the bowel back to normal and prevent bowel damage.”
For Jamie, a treatment called biologic infusion, occurring every six weeks, helps to keep her symptoms at bay, though she does get the occasional flare-up, usually triggered by stress or certain foods. Early on, her mom, who’s a registered dietitian, encouraged her to keep a food journal to better understand her triggers. “And now that I’ve had this disease for 16 years, I know that the simple, healthy, anti-inflammatory foods, like salmon and brown rice, help me,” Jamie says.
Still, one of her biggest lessons has nothing to do with diet. It’s about perspective. “When I was first diagnosed, it was very isolating,” she says. “It’s not a sexy disease, no one wants to talk about their poop. But it’s important that you know you’re not alone in this.” Jamie found community through the Crohn’s and Colitis Foundation, now serving on the board of its San Diego chapter.
“Life is not over after your diagnosis,” she continues. “I wanted to be a teacher, I wanted to be a mom, I wanted to get married, I wanted to travel. And when I was diagnosed, I thought my life would do a 360… I thought I didn’t know who I was. But this disease doesn’t have to run your life or ruin your life. You can take control.”
She also stresses the importance of advocating for yourself—especially if something doesn’t feel right. “Listen to your body,” Jamie says. “If you feel that something’s wrong and you see that something is wrong, seek medical attention. Don’t try to handle it yourself.”
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The post “Here’s How I Knew I Had Crohn’s Disease”: One Woman’s Long Journey to a Diagnosis appeared first on The Healthy.
She initially thought her symptoms were caused by stress or diet, then it took years to get an answer. Now she says, “Listen to your body."
The post “Here’s How I Knew I Had Crohn’s Disease”: One Woman’s Long Journey to a Diagnosis appeared first on The Healthy.