When four women living in four different states discovered via at-home DNA testing that they shared the same biological father, they quickly learned a second shocking twist. All four have the same condition: ulcerative colitis, a chronic inflammatory bowel disease (IBD). One of the newly discovered half sisters—Nichole Bambanian, of Arizona—closely followed awareness organizations and online support groups. That was how she discovered Feza Remzi, MD, a colorectal surgeon and director of NYU Langone’s Inflammatory Bowel Disease Center.
Today, three of the sisters are patients of Dr. Remzi, a leader in the field of complex IBD surgeries. Two of them—Kristin Geffen, from Idaho, and Katie Sackett, from Oregon—had an ileal pouch anal anastomosis, or J-pouch surgery, and Nichole had surgery to correct complications from her existing J-pouch. A fourth sister, Anna Nevares, had previously had J-pouch surgery at another hospital but traveled from California to offer her support.
Nichole and Anna received an ulcerative colitis diagnosis in their teens. They both had J-pouch surgeries in their 20s at California hospitals, but Nichole’s surgery led to major complications, resulting in several additional surgeries. So when Kristin and Katie were hospitalized with severe ulcerative colitis flare-ups in 2020, shortly after they all found one another, their sisters urged them to go to the best for surgery.
“When Katie and Kristin got really sick and were seeing these doctors, not having any luck, I said, ‘You have to go see Dr. Remzi,’” Nichole recalled. “People speak of him like he performs miracles.”
Dr. Remzi is used to seeing patients from far and wide. In the 6 years he has been at NYU Langone, he and his team have served over 460 patients for primary pouch and redo pouch surgeries.
“We are a resource to the whole country for this complicated problem, with over 60 percent of our patients coming from outside the state,” he said. “We have served 47 out of the 50 states for these complex initial and redo J-pouch procedures. And about half of our patients find us on their own from social media or online support groups.”
The family connection is also not unheard of. Studies have shown that between 5 and 20 percent of people with IBD have a first-degree relative, such as a parent or sibling, who also has one of the associated diseases. Ongoing research is exploring the genetic link.
“We see families all the time, with mothers and daughters and other family dynamics,” Dr. Remzi said. “There is a genetic connection, and this case is a testimony of that. One sperm donor and these four women all have IBD.”
For the four women, it was a relief to find one another and realize how their family health history contributed to their diagnoses.
“The shock of finding out about being donor-conceived was completely overwhelming, very whirlwind, and a sort of out-of-body experience,” Anna said. “But the knowledge about these connections and that there’s such deeper ties really brought a new understanding to this disease and meaning to the discovery. This group of J-pouch sisters is really unique and very special.”
“This light when off and I just felt like I’ve been wondering my whole life, where did this disease come from?” Nichole said. “I blamed myself, eating poorly, growing up on the classic ’80s microwave dinners with plastic wrap, and not drinking enough water, but it was my own genetics that led to this.”
“When people are questioning or think they don’t have a family history of something—well, you might,” Kristin said. “If our experience can all be for a reason, to help people better understand their risk factors for IBD when it comes to a genetic cause, I feel this would be so impactful for future generations.”
About Inflammatory Bowel Disease
IBD is a condition in which there is chronic or recurring inflammation in the digestive tract. The two most common types are Crohn’s disease and ulcerative colitis.
In ulcerative colitis, the disease tissue is limited to the colon, and if medication is not effective in achieving remission and alleviating symptoms, an ileal pouch anal anastomosis, or J-pouch surgery, may be necessary. This consists of multiple procedures in which the colon and rectum are removed and replaced by an internal pouch constructed from the small intestine.
Doctors at the Inflammatory Bowel Disease Center and the Inflammatory Bowel Disease Center at NYU Langone Ambulatory Care Lake Success use advanced diagnostic techniques to identify the type of IBD a patient has and recommend the appropriate medical or surgical treatment.