Years of abdominal pain, bloating, diarrhea — and being dismissed by her doctors — before one doctor finally took the time to listen. Finally, she had an an accurate diagnosis, and could move on to effective treatment. Johannah Ruddy’s story was published last month in a prominent medical journal,* with an online companion video. By now, it must have been read by gastroenterologists across the country and around the world. But this story is just as important for patients and their families to hear. They too often get “blown off” or rushed through appointments, sent for unrevealing test after unrevealing test, and essentially encouraged to stop complaining and give the doctor time to see patients with real problems. Johannah describes how for a few years she even gave up on doctors, feeling demeaned and that she was wasting her time and money on medical visits. Fortunately, she decided to give one more doctor a chance.
I’m reminded a bit of my own experience as a second-year medical student, going in for an appointment at the student health center after having had a few days of excruciating abdominal pain. By then, fortunately, I was feeling much better. The NP who saw me reassured me that my symptoms were due to being a nervous medical student. (Well, I was nervous, and I was a medical student.) Unhelpfully, she pointed out that I really should have known better than to take ibuprofen, which can irritate the stomach. (Well, the pain had started before I took the ibuprofen, but she was right.) So, I went through the rest of my medical training and beyond, knowing that I would always have severe abdominal pain when I traveled, had too many nights on call, or was emotionally stressed — and that the pain would pass after a few days. I felt ashamed to have these symptoms, viewing them as a sign of psychological weakness. I was not as persistent as Johannah. I gave up right away, and did not seek additional opinions and tests for another 15 years, when my symptoms evolved. It was only at the age of 39 that I was finally diagnosed with Crohn disease, after insisting that my primary MD order appropriate lab tests to “prove” that my symptoms were not imaginary.
The beginning of Johannah’s story, and mine, will be all too familiar to people with chronic GI symptoms and to their families. My hope is that the ends can become more familiar, as well, with symptoms resolved or in remission. Johannah finally found the right doctor: one who looked her in the eye, asked her questions, expressed support, and spent an hour learning her story and providing explanations and treatment options. The kind of care which Johannah received is the kind of care which all patients should receive. It is a shame that in today’s harried medical environment, not all doctors can provide the kind of care which Johannah’s doctor did.
*Ruddy, J. From pretending to truly being OK: A journey from illness to health with postinfection irritable bowel syndrome: The patient’s perspective. Gastroenterology 2018; 155:1666-1669.
Rebecca Cherry, MD, is a pediatric gastroenterologist (GI) at Pediatric Specialty Partners in San Diego. An expert in the care of children and adolescents with irritable bowel syndrome (IBS), inflammatory bowel disease (IBD), and other digestive disorders, she also has integrative training in clinical hypnosis.