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In Part 1 in our series on inflammatory bowel disease (IBD), Dr. Randy Longman, Director of the Jill Roberts Center for Inflammatory Bowel Disease and Associate Professor of Medicine at Weill Cornell Medicine, and Dr. Dana Lukin, Clinical Director at the Roberts Center and Associate Professor of Clinical Medicine, explain the characteristics and symptoms of Crohn’s disease and ulcerative colitis. They also share what is known about the causes of these diseases: a combination of genetic and lifestyle factors.
In what follows, Drs. Lukin and Longman discuss both tried-and-true and cutting-edge treatments for IBD, from medication to surgery. They also address the complex relationship between diet and IBD, along with the need for individualized approaches to nutrition. And finally, they name quality of life as the ultimate goal of the treatments and care patients receive at the Roberts Center.
Read on for a short course in the treatment and management of Crohn’s disease and ulcerative colitis.
Over the past 20 years, our arsenal of medical treatments for IBD has expanded dramatically, Dr. Lukin says. “That arsenal includes medications aimed at controlling symptoms, reducing flares and preventing disease progression and complications. These medications decrease inflammation in the lining of the gastrointestinal tract, tamp down the body’s dysregulated immune response and heal bowel damage. They may be delivered orally, intravenously or by injection.”
Treatment of IBD has evolved from a reactive approach, with an emphasis on controlling symptoms, to a more systemic one that seeks to modify the course of the disease and prevent severe complications, including fistula, abscesses and even colon cancer.
Twenty years ago, IBD specialists used to administer more immunosuppressants than they do today. But they were also pioneering the “targeted” approach with medications that curb TNF-alpha, an inflammatory protein. Belonging to the class of drugs known as biologics. Infliximab, adalimumab, golimumab and certolizumab pegol are all anti-TNF-alpha drugs that are still in widespread use today, and for good reason: They’re highly effective and rapid in onset, and they have a good safety profile.
More recently, Dr. Longman says, “we’ve added medicines that block other inflammatory factors, such as integrins (vedolizumab), approved for use in both Crohn’s disease and ulcerative colitis; and other agents that target the IL-12 and/or IL-23 pathways, including ustekinumab, approved for the treatment of both types of IBD, and risankizumab, currently approved for Crohn’s disease.
“Small molecule-based medicines are yet another option,” he adds. “These are not biologics, and they are administered orally. Tofacitinib and upadacitinib, both Janus kinase (JAK) inhibitors, and ozanimod, a sphingosine-1-phospate (S1P) receptor modulator, are prime examples; both are approved for use in ulcerative colitis.
“There are more and more choices nowadays, making for more complex decision-making,” says Dr. Lukin. “If you have IBD, a great relationship with your physician and care team is paramount. Ultimately, treatment decisions are a team effort.”
Sometimes, patients are tempted to self-medicate with corticosteroids when the going gets tough. While understandable, that is not a good idea, Dr. Lukin says. “There are a lot of adverse effects associated with chronic steroid use. These range from effects on bones to blood sugar, vision, skin and other organs and systems. If your symptoms worsen, the best course of action is to have an open dialogue with your care team and discuss a more proactive approach to treatment.”
There are many scenarios in which surgery is medically indicated. “In the event of Crohn’s disease that has progressed, often over many years, or if there’s scarring of the bowel, a surgical approach will be the best one,” says Dr. Lukin. “A surgeon will remove the damaged bowel and preserve the normal portion. Then, we can re-evaluate how to proceed afterward.”
Surgical treatment of ulcerative colitis entails removal of the entire colon and in many cases, the creation of an ileal pouch, which will replace the colon for bowel function.
Dr. Lukin is quick to emphasize that surgery does not represent a cure in either Crohn’s disease or ulcerative colitis. “We often use medical therapy after surgery, as the disease process doesn’t magically disappear. Unfortunately, there’s no magic bullet for IBD.”
Still, he says, many patients, including the majority with ulcerative colitis, do well on medication alone without the need for surgery. And then there’s the role of diet, without which no discussion of IBD is complete.
You are what you eat, as the saying goes, but when it comes to IBD, your diet does not cause the inflammation in your bowel. Still, dietary changes can be helpful, both during inflammatory phase of the disease and also during its quieter phase. If you have IBD, your diet will need to be adjusted and individualized—not just once but over the course of your lifetime. Unfortunately, there is no one IBD diet to suit every patient, Dr. Longman says.
“Your optimal diet,” he explains, “will often depend on the type of IBD you have. For example, if you have a lot of colon inflammation, a high-fiber diet may be overly irritating. The same goes for patients with scarring or a stricture. At the Roberts Center, our patients work with a dietician to map out a food plan, but in truth, there’s a lot of trial and error involved.”
Dr. Longman’s best advice? Don’t trust everything you see online. For one, he says, most of the diets you’ll find there are extremely restrictive. Even more important, there have been very few studies confirming the value of any particular diet for people with IBD. Instead of putting your faith in unproven diets, trust your own body and your own judgment, and work with the nutritionist on your care team.
Just as your diet will need to be adjusted and re-adjusted over time, so will your treatment regimen, Dr. Longman says. The goal of IBD therapy is not technical, abstract or theoretical. It’s about achieving your best quality of life. The question is, how do physicians help you get there? Mainly, by monitoring symptoms, with your help. How often are you going to the bathroom? How much bleeding are you experiencing? What else is going on?
In addition, he says, novel blood and stool tests can provide a deeper understanding of your disease. These look at inflammation and tell us how well your medicines are working.
“We’ve also seen improvements in endoscopy. We can look at your intestine and see whether it’s inflamed, and we’ll perform a biopsy when indicated. If there are signs of worsening inflammation, we can make adjustments to your treatment plan. And if we see evidence of musocal healing—actual improvement in inflamed tissue—we may make changes accordingly.”
And as for stress, the Roberts Center’s dedicated team of specialists are determined to help patients develop strategies for minimizing the effects of stress on their lives and their gut. A “nervous stomach” is one thing, but an inflamed bowel is quite another. Managing stress can go far toward shortening the duration of “flare” symptoms.
To learn more about the Jill Roberts Center for Inflammatory Bowel Disease or to make an appointment, please visit here.