Inflammatory bowel disease, or IBD, is an umbrella term for conditions that cause chronic inflammation in the digestive system, leading to abdominal cramps and pain, diarrhea, and other symptoms. Patients with IBD will receive a diagnosis of ulcerative colitis, where inflammation damages the rectum and inner lining of the colon, or Crohn’s disease, which may cause inflammation in any part of the digestive tract. Together, these conditions affect about 1.5 million in the United States.
In the following Q&A, Jill Gaidos, MD, associate professor of medicine (digestive diseases), medical director of the Yale Inflammatory Bowel Disease Program, and vice chief of clinical research (digestive diseases), shares more about the disease, new treatment options for patients, and other considerations for caring for patients with IBD.
What led you to care for patients with IBD?
During fellowship training, I was asked to cover for another gastrointestinal (GI) fellow in the IBD clinic and knew I found my career path. Since IBD is a chronic condition without a current cure, I’m able to have long-term relationships with my patients, which I enjoy. I also like taking care of patients of all ages, managing acute illness, and providing preventative care.
What new treatment options are available for patients?
We are very fortunate that patients with IBD have so many treatment options, and our options are only increasing.
Within the past few years, the Food and Drug Administration (FDA) approved three new drugs for IBD. About a year ago, the FDA approved risankizumab, or Skyrizi®, for Crohn’s disease. This medication is delivered through three IV infusions, followed by regular subcutaneous injections. This means patients get more of the drug up front, which may help them feel better sooner. Miririkizumab, or Omvoh™, was recently approved for ulcerative colitis. Last October, the FDA approved upadacitinib, or Rinvoq®, an oral therapy for both ulcerative colitis and Crohn’s disease. An oral therapy is a big selling point for patients who don’t want or can’t get injections.
The great news is that even though many of these therapies are newer to the market, their safety profiles are very, very good. The risk of infection is low, and we haven’t seen any increased risk of cancers. The biggest worry with the use of upadacitinib is shingles, so we encourage all of our patients to get the shingles vaccine.
How do you determine which medication to use with each patient?
For newly diagnosed patients, we focus on what medication fits best in their lifestyle. Are they comfortable injecting themselves? Will they remember to take a pill every day, or would they prefer to come in every two months for an infusion and then be done with it? For patients who have already been on two or three drugs, there’s a more limited selection.
The reality is that we also need to understand what their insurance will pay for. All these medications are very expensive, so without adequate insurance coverage, it won’t be feasible for most patients. We work closely with our clinical pharmacy team to help get insurance approval or find a patient assistance program to help every patient get access to treatment.
What questions do patients often have about their IBD?
One of the most frequent questions I get from patients is about diet. “Did I get this because of something I was eating? What should I eat? What should I avoid?"
Many patients who come to see me are on very restrictive diets, and we worry about them getting enough nutrition and enough calories. This is particularly important when a patient has active inflammation, which increases metabolism.
Unfortunately, social media is full of misinformation. Physicians need to have proactive conversations with our patients and provide evidence-based recommendations about their nutrition needs. We have dedicated IBD nutritionists who work with our patients to review our patients' current nutritional intake and make dietary recommendations when needed.
What are some of the challenges in treating patients with IBD?
With IBD, there are multiple pathways that can cause inflammation. For that reason, patients often need to try multiple medications to find one that works. It would be incredibly useful to have a commercially available lab test that could pinpoint the cause of the inflammation, but we’re just not there yet. I try to set expectations beforehand so patients know how fast a medicine should work. If they’re not feeling better by that time point, we can switch their medication or increase their dosage. This process can be frustrating for patients.
Also, we don’t have many drugs to treat more complicated forms of the disease. For example, it can be difficult to treat Crohn’s disease in the small bowel or the perianal area—and this can markedly limit patients’ quality of life. My colleagues and I are leading clinical trials to demonstrate the effects of specific drugs on patients with severely active Crohn’s disease. However, while the research is encouraging, there’s still much more to learn.
Another challenge is that the symptoms of Crohn’s disease can be vague. I often see patients, particularly young women, who have been misdiagnosed with irritable bowel syndrome (IBS) but actually have inflammatory bowel disease. I encourage all patients who have persistent symptoms to make sure they get a complete evaluation because, with the right diagnosis, we can help them feel better faster.
Where should patients with IBD receive treatment?
Most patients with IBD can successfully manage their disorder with a community doctor. Large academic centers like Yale only see about 15% of patients with IBD. I often see patients with more complicated forms of the disease.
With so many treatments available, it can be difficult for doctors, especially those who don’t specialize in IBD, to stay up to date on all the options. I often receive patient referrals from community doctors or gastroenterologists who are unfamiliar with a new medication but think it might benefit their patients. Once the patient’s illness is well-managed, I encourage them to return to their referring provider for ongoing care. Patients who feel well don’t necessarily need to drive two hours to continue to see me.
I also see patients who want a second opinion to make sure their doctor is doing everything that they should.
Ultimately, patients need to trust their doctors. We talk about very intimate things, and our patients need to feel comfortable sharing details with us so that we can treat them appropriately. Open communication is critical.
Since forming one of the nation’s first sections of hepatology more than 75 years ago and then gastroenterology nearly 70 years ago, Yale School of Medicine’s Section of Digestive Diseases has had an enduring impact on research and clinical care in gastrointestinal and liver disorders. To learn more about their work, visit Internal Medicine: Digestive Diseases.