Game-changing care for IBD
Patients with inflammatory bowel disease turn to Dr. David T. Rubin for leading-edge treatment — and a doctor who won’t give up in his quest for a cure
Patients come through his door looking for answers and relief. The symptoms that began as a nuisance have turned painful and chronic. Their bodies have turned on them.
University of Chicago Medicine gastroenterologist David T. Rubin is a world-renowned expert on the treatment and research of inflammatory bowel disease (IBD), which includes Crohn’s disease and ulcerative colitis. He’s a tireless educator — in classrooms, at conferences and on Twitter, where he’s known as @IBDMD — and an ardent advocate for people living with IBD. His preeminence was recognized in 2020 with the prestigious Sherman Prize. Becker’s Healthcare recently named him to its list of “10 GI Leaders to Know.”
“David is in a very elite category,” said Dr. Miguel Regueiro, Chair of the Department of Gastroenterology, Hepatology and Nutrition at the Cleveland Clinic, who has known Rubin for decades. “He’s doing cutting-edge clinical research and is one of the leaders of education in the field of IBD internationally.”
Rubin is the type of doctor who becomes lifelong friends with his patients. He’s been known to help edit a paper of a patient who has gone off to college and receives gifts like custom-made coffee mugs proclaiming “Colon Whisperer.”
For his new patients, he is the confident, optimistic, reassuring voice they need to hear.
“The first thing I tell my patients, especially those who have been newly diagnosed, is that we’re going to treat it early, and we’re going to treat it hard, because after we do that I would like you to be in remission the rest of your life,” said Rubin, Section Chief of Gastroenterology, Hepatology, and Nutrition at UChicago Medicine. He created and is also co-director of the Digestive Diseases Center.
The problem, as Rubin knows well, is that it is rarely that easy. Rubin explains to his patients that, while recent advances provide doctors and patients with the tools to manage these diseases, none is perfect, and there are no cures.
But he is also sure his patients hear one final thought: This disease will not ruin your life. It does not define you.
These are particularly comforting and important ideas to hear because Crohn’s disease and ulcerative colitis typically first develop in teens and young adults between age 15 and 30.
Which likely explains another coffee mug he received as a gift: “Keep calm and call Dr. Rubin.”
Understanding IBD
As many as 70,000 Americans will be diagnosed with Crohn’s disease or ulcerative colitis next year, joining more than 3 million others in the U.S. who live with these chronic conditions. Just as with other immune-mediated diseases, they are becoming more common.
To understand IBD, it is necessary to explore one of the most underappreciated parts of the human body: the digestive system. Comprising the gastrointestinal tract, liver, pancreas and gallbladder, it harvests the nutrients from everything you eat and drink, breaking them down to be absorbed through the cells lining the system, and then packages the waste for subsequent elimination.
But scientists now know that the system does so much more. There’s a growing appreciation that a key player in health is the microbiome — the collection of microbes, be they bacteria, fungi, protozoa, or viruses — that lives in and on the body, with the largest concentration in the gut. The microbiome is essential for such wide-ranging tasks as brain development, nutrition and the ability to fight infection. The microbiome also plays a role in obesity, food allergies and diseases such as diabetes, rheumatoid arthritis, multiple sclerosis and IBD.
“When you have a healthy immune system in your intestines, it continuously responds to the environment,” Rubin said, adding that the gut is exposed to the environment more than any other part of the body except the skin. “Every time you eat, you’re exposing your intestines to what’s coming from the outside world.”
In normal situations, this sophisticated system becomes mildly inflamed after a meal and then shuts off and goes back to a resting state, distinguishing between nutrition and pathogens.
“What happens with IBD is that the inflammatory system of the gut is turned on but doesn’t turn itself off, either because the patient has lost their ‘off switch’ or because there is ongoing stimulation by something we are yet to discover,” Rubin said. “Either way, when the inflammation continues, it causes damage.”
Symptoms may be extremely uncomfortable and vary based on the location of the inflammation. Patients can experience pain and cramping, more frequent bowel movements, diarrhea, bleeding and weight loss.
“Treatments are aimed at turning off the inflammation,” he said. “We’ve made great progress in managing these conditions. When I started my training, we basically had no treatments. Now, more than 15 effective and safe treatments are available.”
That includes the revolutionary development of biological therapies for IBD. Biological therapies are proteins that are made in living cells. There are now three classes of biological therapies available for Crohn’s disease and ulcerative colitis.
The first class, the anti-TNF class, includes drugs that block the body’s signals that fight infection or cause inflammation. By targeting the inflammatory protein called TNF, anti-TNF therapies can shut down inflammation broadly across the body. These drugs are also used to treat rheumatoid arthritis, psoriasis and other inflammatory conditions.
Another biological antibody therapy selectively targets the white blood cells on their way to the bowel. The newest antibody class targets a different inflammatory protein called IL-23, and works in IBD and psoriasis.
“The strategy is to turn down the overactive immune response long enough so that the body can take over and then heal,” Rubin explained.
The newest treatments focus is on synthetic targeted small molecules, which work on specific enzymes or other mechanisms of inflammation. These molecules are small enough to be delivered as pills and be absorbed into the bloodstream.
Finally, 5-ASA therapies, which Rubin has been studying for years, were first developed in the early 1950s to treat arthritis. They don’t suppress the immune response, but are believed to affect immune activity in the lining of the bowel.
With so many options, it would seem that patients with Crohn’s disease and ulcerative colitis can live worryfree, even if a cure isn’t found. But then the human body proves again why it is such a marvelous example of biological engineering.
“Remember that we’re not treating the cause of IBD, we’re treating the result of it,” Rubin said. “The immune system of the gut is there to protect us. It still thinks there is a threat. So, it can be just a matter of time before it finds a new pathway and the inflammation returns.”
As a clinician-scientist, Rubin attacks these problems from all angles, pushing the field’s understanding of biology and disease in his research while analyzing information coming from his patients. Each patient’s unique biology might provide a special insight into how IBD works.
“These are the things… they literally keep me awake at night,” said Rubin. “Is this the patient who is going to be the key to what we’re trying to find?”
Game-changing care
Rachel Hendee’s story captures the recent history of IBD treatment in a nutshell. Diagnosed with severe Crohn’s disease at 14 in the mid-1990s, she had surgery to remove part of her small and large intestines a year later in Wisconsin. Her ongoing care was still through a specialist in her hometown of Freeport, Illinois, but he began sending her to UChicago Medicine for regular checkups.
She went through the treatment options available at the time, but the disease kept returning. Then, in the late 1990s, Remicade (the first anti-TNF therapy) was approved, and Hendee said she was the first in Freeport to receive it. “Remicade was a miracle drug,” she said. The medication meant Hendee was able to go away to college. It even meant she could go to China for a year to teach English.
But her health declined sharply when she returned. She started cycling through drug protocols that would work for short periods and underwent 10 surgeries and countless smaller procedures. Despite her difficult health situation, she managed to return to school and earn a degree as a physician assistant. Seven years ago, she transferred her care full-time to UChicago Medicine.
“That was a game changer,” Hendee said.
She appreciated how Rubin approached her care, how he was willing to try new medications and had the expertise and social media platform to successfully appeal to her insurance company to pay for it. Finally, though, in 2019, when her body fought off another round of medications, she and Rubin decided the best course of action was to have her colon removed.
“I’ve probably felt the best I have in the 25 years since I was diagnosed,” she said.
Hendee’s early diagnosis and experience played a big role in her career decision to be a physician assistant in colon and rectal surgery at another Chicago hospital. And her own expertise in the field has only increased her admiration for Rubin. When she heard about the Sherman Prize, she decided to nominate him for the award.
“Dr. Rubin really is amazing,” she said. “I think that quite possibly he is the busiest person I know, but when you’re in that appointment with him, you feel like you’re his only patient.”