For many patients, getting an accurate and early diagnosis of inflammatory bowel disease (IBD)—Crohn’s disease or ulcerative colitis – has been a story of time, frustration, discomfort, cost and continued damage to internal organs. I want to share a story I heard about an all-too common journey.
Susan is 38 and lives with Crohn’s, and her life has been dramatically altered by this disease.
Two years ago, Susan was working 60-hour weeks, traveling and leading a very active lifestyle. Slowly, over the course of a few months, she noticed that her energy levels weren’t as high as they once were. She couldn’t exercise at the gym and she was sick 24/7 with vomiting and diarrhea—nothing stayed down. A week of that was enough to send her seeking medical attention. That’s when the painful and time-consuming odyssey began.
The struggle to diagnose
Susan visited her primary care physician and was diagnosed with a bacterial infection and prescribed antibiotics. Unfortunately, this didn’t address her symptoms.
Unable to bear these symptoms any longer, Susan visited an Urgent Care center where the doctor told her that her body was rejecting the antibiotics and instructed her to stop taking them. He referred her immediately to a gastroenterologist. Recognizing the severity of her symptoms, Susan’s provider used an existing relationship to bypass the long wait of a possible three months or more to meet a specialist, and she was seen immediately.
After many physician visits, endless tests and no relief or answers, Susan had to take short-term disability. She was unable to work due to fatigue and the constant onslaught on her body. After six weeks, she was losing weight, fatigued and still unable to work. Seeking a second opinion, the next gastroenterologist ordered a series of tests, including a CT scan and colonoscopy, which finally led to a Crohn’s disease diagnosis and medication to ease her symptoms.
The new test to improve diagnosis
Today, life is better. Susan is in remission, but still not living as she had before she was diagnosed. She also loses one day of work every eight weeks when she receives a drug infusion to keep her disease at bay.
I asked Susan what she would say if she could have had a blood test that would have told her doctor at the onset of this journey that she had Crohn’s. Susan explained that the diagnostic confusion and period of “not knowing” was the most difficult aspect emotionally—not to mention that her disease wasn’t being properly controlled, forcing her to miss out on work and life opportunities. For Susan, a blood test could have led her down the right treatment path more quickly.
Today, there is a new RNA blood test that is more than 90 percent accurate at the earliest sign of symptoms, can identify irritable bowel syndrome (IBS) versus IBD and detect Crohn’s versus ulcerative colitis. This groundbreaking diagnostic tool can end the waiting and suffering many patients endure when seeking an accurate diagnosis. The promise of changing Susan’s story and the stories of so many others facing a similar diagnosis is the reason we get up in the morning.