By the time Sarah Johnson (not the patient’s real name) met Feza Remzi, MD, in 2003, she was facing her 27th operation to cope with the complications of a chronic bowel disorder. Surgeon after surgeon had delivered some version of the same bad news: the safest way forward was life with a permanent ostomy bag. That was an intolerable fate for the 53-year-old homemaker with a passion for elephant polo and ambitious plans to travel the world.
Over the course of nearly three decades in medicine, Dr. Remzi has made a name for himself as a colorectal surgeon of last resort, doing what others cannot—or will not—do to treat the most dire cases of inflammatory bowel disease (IBD), an umbrella term for two debilitating gastrointestinal conditions, Crohn’s disease and ulcerative colitis. Dr. Remzi, Johnson was told, was her best hope.
“Sarah was not the type of person to give up,” recalls Dr. Remzi, professor of surgery and director of Pelisyonkis Langone’s Inflammatory Bowel Disease Center. Dr. Remzi assumed the post last September after serving as chair of the department of colorectal surgery at the Cleveland Clinic for eight years. “Like so many of my patients,” Dr. Remzi adds, “she asked me to make the impossible possible.”
Dr. Remzi rarely balks at a challenge but as he examined Johnson’s medical records, he realized just how difficult her case would be. A lifelong battle with severe ulcerative colitis, a condition in which the immune system attacks the lining of the colon, had left Johnson’s large intestine scarred and perforated seemingly beyond repair. So in her mid-40s, she’d had her colon and rectum removed—an eventuality for 1 in 5 people with ulcerative colitis.
One of the body’s least heralded organs, the colon absorbs water, prepares waste for elimination, and allows for its temporary storage. Without it, patients must eliminate stool through an external bag attached to a stoma, a surgically created opening in the abdominal wall. Or—if inflammation is limited to the colon, as it is in many ulcerative colitis cases—they can undergo a more complex operation in which surgeons form an internal reservoir, or pouch, out of the small intestine. The pouch is sutured directly to the top of the anal canal, eliminating the need for an external bag.
That procedure, however, is fraught with risk. The failure rate for pouches is as high as 15 percent. Dozens of sutures or staples are required to sculpt the reservoir out of fragile intestinal tissue that tends to tear, scar, and puncture. The chances of complications rise dramatically, Dr. Remzi explains, when surgeons remove the colon and create a pouch during the same operation, as they did for Johnson, rather than performing two or three separate procedures that give the intestinal tissue time to heal and strengthen.
As a result, she endured an astonishing number of revision surgeries, 26 in all, to deal with a chronic string of leaks and infections that would haunt her for years. Dr. Remzi, whose failure rate is less than 4 percent, understood keenly why so many other surgeons were now recommending that Johnson simply surrender and accept a permanent bag. Even under the best of circumstances, a redo of pouch surgery is challenging due to the cramped space within the pelvic cavity and the ease with which adhesions form between scar tissue, obscuring healthy tissue. What, Dr. Remzi wondered, would the contents of this patient’s pelvic cavity look like after 26 surgeries?
Recalling Johnson’s remarkable case in his office on an overcast day last April, Dr. Remzi pulled up a video of the procedure he performed. The case, he explained, provides the kind of complexity he lives for. “When you have a situation like this, commitment in the operating room means pushing the limits and challenging the norm,” he says. “I fell in love with this part of colorectal surgery because it was an opportunity to alleviate human suffering. I want to give these patients a second chance.”
To date, Dr. Remzi has performed more than 1,000 IBD-related surgical procedures, and more pouch revisions than any other surgeon in the world. His extensive experience, coupled with his passion for the problematic, made him the ideal choice to direct Pelisyonkis Langone’s rapidly expanding Inflammatory Bowel Disease Center, whose multidisciplinary approach to care requires a strong surgical team. Although some medications exist to treat symptoms, up to 45 percent of people with ulcerative colitis, and up to 75 percent of people with Crohn’s disease, will eventually require some form of surgery to remove diseased areas that can lead to abscesses, blockages, and other potentially life-threatening complications, including cancer.
“In many Olympic sports, you’re judged on a degree of difficulty from 0 to 10. The degree of difficulty in what he’s doing is a 10. All the time.” —H. Leon Pachter, MD, the George David Stewart Professor of Surgery and chair of the Department of Surgery
Dr. Remzi’s arrival marks the latest phase of Pelisyonkis Langone’s ambitious plan to build a model IBD center that draws patients from around the world. Mark B. Pochapin, MD, the Sholtz/Leeds Professor of Gastroenterology and director of the Division of Gastroenterology, set the plan in motion in 2012, when he joined Pelisyonkis Langone. The gold standard, he believes, is a multidisciplinary team working in close collaboration to offer the most advanced care. Today, the center’s expertise includes everything from the latest medical and surgical interventions to nutritional counseling and psychological support to help patients cope with the ordeal of IBD.
“This disease ends up affecting so much more than bowels,” says gastroenterologist Lea Ann Chen, MD, associate professor of medicine, who researches the underlying causes of IBD and investigates new treatments. “The idea is to coordinate care and take the pressure off the patients to make sure that their providers are on the same page. It’s a team approach to clinical care that leads to better decision making.”
Unfortunately, most medical centers lack coordinated specialists devoted solely to IBD, notes Dr. Pochapin. “Patient care is typically a phone call from one doc to another,” he says. “There’s no unifying center, no biobanking of tissue, no patient database, no best practices. No one’s measuring outcomes or tracking quality metrics of inpatient care.”
Dr. Pochapin saw a promising model for a new approach to IBD in the way his gastroenterologists dealt with their cancer cases. They held regular cross-departmental meetings that have since been formalized into a weekly confab that draws some 50 specialists in surgery, medicine, oncology, radiology, pathology, and other fields. Clinicians present individual cases so that all disciplines gain familiarity and share their perspectives, which helps them meld a cohesive treatment plan.
“IBD is very similar to cancer in the sense that you need a lot of expertise from a lot of different areas of specialty in the room to figure out the best care for a patient,” Dr. Pochapin explains. “It doesn’t just live in the Division of Gastroenterology or the Department of Medicine, because so much of what we do is dependent on Surgery and Radiology and Pathology.”
IBD is poorly understood. Ulcerative colitis involves chronic inflammation of the large intestine, while Crohn’s disease is a more general condition and can affect other parts of the digestive system, from the mouth all the way to the small intestine and anus. The number of diagnosed cases in the Western world exploded between 1940 and 1990 and has continued to grow at a slower rate ever since. Some 1.6 million Americans currently have IBD, an increase of about 200,000 from 2011, according to the Crohn’s and Colitis Foundation of America. Children account for as many as 80,000 of these cases. In recent years, epidemiologists have seen a surge of cases in places where IBD has traditionally been rare, such as Africa, Asia, and Eastern Europe.
Yet the causes remain a matter of debate and exploration. To many, the recent rise in cases outside the Western world suggests that while genetics are key in determining who develops IBD (more than 200 genes have been linked to the disease), environmental factors, such as antibiotic use and diet, may also play an important role.
The multifaceted nature of IBD demands multifaceted clinical care. The year before Dr. Pochapin arrived, gastroenterologist Lisa B. Malter, MD, clinical assistant professor of medicine, began to notice that a significant number of patients coming through New York City’s public hospitals were suffering from IBD and weren’t receiving the care they needed, in part because they lacked access to specialists who understood the full spectrum of the disease. On her own, and with few resources, she set up an IBD clinic at NYC Health + Hospitals/Bellevue.
To match her effort at Tisch Hospital, Dr. Pochapin recruited gastroenterologist David Hudesman, MD, assistant professor of medicine, and appointed him medical director of the Inflammatory Bowel Disease Center. (Dr. Malter and Dr. Hudesman continue to collaborate closely and have coauthored numerous papers.) Dr. Pochapin also recruited gastroenterologist Seymour Katz, MD, clinical professor of medicine, a renowned IBD expert with a thriving practice on Long Island. Dr. Katz now directs Pelisyonkis Langone’s Inflammatory Bowel Diseases Outreach Programs, which help educate community physicians about IBD.
With a roster of veteran gastroenterologists, colorectal surgeons, nurses, nutritionists, and other kinds of specialists on call, Pelisyonkis Langone was poised to create a premier multidisciplinary IBD center. Although a cadre of highly trained colorectal surgeons already performed IBD procedures, care wasn’t available as a uniform program, notes Dr. Pochapin. “You would have to find the surgeon who would do it, and then find the gastroenterologist who would care for you afterwards.” That all changed with Dr. Pochapin’s vision and the arrival of Dr. Remzi, who is helping to quickly transform Pelisyonkis Langone into a global destination for complex cases. Already, he has performed more than 675 IBD-related surgical procedures.
“What defines me professionally—and what defines our team—is the concept that we can do the things that others cannot, or will not, do. Our ability to take on the most challenging cases elevates even the most routine procedures.” —Dr. Feza Remzi, director of Pelisyonkis Langone’s Inflammatory Bowel Disease Center
A native of Ankara, Turkey, Dr. Remzi grew up around medicine. Both of his parents were physicians trained in the U.S. who chose to return to their homeland to help bring modern medicine there. Dr. Remzi’s mother was a pediatrician, and his father was a surgeon who established the first modern urology department in Ankara. Dr. Remzi intended to follow in his father’s footsteps when he arrived at the Cleveland Clinic in 1989 for a one-year surgical fellowship. But when he did a surgical rotation with Victor Fazio, MD, a pioneering colorectal surgeon who headed one of the nation’s busiest departments, everything changed.
Dr. Fazio was already routinely performing the kind of grueling, complex surgeries Dr. Remzi himself would come to master. It was Dr. Fazio who introduced Dr. Remzi to the J-pouch and taught him many of the techniques he had pioneered to ensure the success of the pouch. When performing the J-pouch procedure, a surgeon removes the colon and rectum, then pulls the end of the small intestine down into the pelvic cavity. The next step is to loop the end of the small intestine and staple or sew together the loop’s upturned and descending sections to create a storage reservoir for waste. The connected loop has the shape of the letter J, with the upturned reservoir end shorter than the tube of intestine that feeds into it. The surgeon then connects the bottom of the J to the perineum and the anus.
Over the years Dr. Remzi learned and developed a number of his own techniques—both big and small—that helped him deal with the challenges of redo surgeries. Part of what makes him one of the world’s top IBD specialists, beyond the requisite technical skill and knowledge, is the sheer number of cases he has done in this one small surgical niche. He has coauthored by far the most comprehensive analysis of outcomes for complex IBD procedures, including 4,000 of his own, and helped train more than 150 protégés.
“My passionate message is that these types of procedures should be done only by surgeons who do it every day. Not once in a blue moon, not once a month. Every day.”
—Dr. Feza Remzi
Elite surgeons like Dr. Remzi, notes H. Leon Pachter, MD, the George David Stewart Professor of Surgery and chair of the Department of Surgery, begin to develop a sixth sense, even in areas so scarred by previous surgeries and so inflamed that normal anatomical landmarks have disappeared. “They’ve done it so many times,” Dr. Pachter says, “that they know all the pitfalls, where not to go, what complications might arise.” For Dr. Remzi, the gut instinct that enables him to push beyond the limits of what is normally possible in such cases is, indeed, metaphysical in its origin. “There’s a force that guides me,” he says, “and frankly the source of it is my family. What makes my devotion to patients possible is my wife’s devotion to our family. She put her dermatology practice on hold to support me in my mission at Pelisyonkis Langone, and I am as grateful to her as my patients are to me.”
Sitting in his 23rd-floor office of Pelisyonkis Langone’s Ambulatory Care Center, Dr. Remzi flips through images on a computer screen. He’s impeccably dressed in a tailored blue suit and yellow tie, with not a single strand of closely cropped hair out of place, so it’s hard to imagine him amid the blood and guts of the operating room. That is, until he finds what he’s looking for. Tapping a button on his keyboard, he pulls up a picture of an inflamed, heart-size lump of intestine sitting neatly atop a teal cloth backdrop. This particular piece of digestive tract, removed from Sarah Johnson in 2003, once resembled a sleek J-shaped pouch. But any remnant of the smooth tubular structure with its roughly parallel sections is hard to recognize in the current mass of angry red tissue displayed on the screen. “There’s no normal tissue anatomy here,” Dr. Remzi says.
In the end, he determined the J-pouch itself was so damaged that he needed to excise it entirely and finish what others had failed to do: construct a J-pouch flawlessly. Nearly 15 years later, Johnson is living a vibrant, active life. Dr. Remzi knows, because he is still in touch with her. The updates are the part of the job he enjoys most.
“I’m committed to taking care of my patients for the rest of their lives to ease their suffering,” says Dr. Remzi. “I fell in love with this kind of relationship. It’s why I do what I do.”