Teenager With Severe Inflammatory Bowel Disease Thrives After Advanced and Compassionate Care
In the summer of 2023, Alexis was entering her freshman year of high school. This new chapter can bring a lot of feelings, including excitement for new beginnings, and some anxiety. Alexis was also experiencing depression, vomiting, and dramatic weight loss. It was clear that her symptoms were not just first-day jitters.
Blood work raised concerns, but access to a gastroenterologist was limited, with the earliest appointment still months away. Alexis tried to balance her workload and worsening symptoms, with fevers and vomiting becoming a daily occurrence. After weeks of distress, her mother, Victoria, brought her to the emergency room, where a CT scan revealed strong signs of Crohn’s disease, a chronic inflammatory condition of the digestive tract. Alexis was referred to a local gastroenterologist, and after a colonoscopy and endoscopy, began treatment with high-dose steroids, a common first-line treatment to decrease inflammation and prevent ongoing damage. Despite these efforts, Alexis’ health continued to decline.
“While most kids were making new friends their freshman year of high school, Alexis was lying in hospital beds,” Victoria shares.
To find more specialized care, Victoria was referred to the Susan and Leonard Reinstein Inflammatory Bowel Disease Clinical Center at Mount Sinai. Within days, Alexis had an emergency appointment with Elizabeth Spencer, MD, Associate Professor of Pediatric Gastroenterology at the Icahn School of Medicine at Mount Sinai and Mount Sinai Kravis Children’s Hospital.
“From the moment we entered the waiting room, we knew we were in the right place,” Victoria recalls. “Dr. Spencer and her team made us feel comfortable and took the time to explain the depths of the disease.”
Alexis’ disease was noted to be severe based on the reports from prior emergency department and gastroenterology visits. Dr. Spencer initiated treatment with infliximab, a biologic medication used to treat complex penetrating and stricturing IBD. When Crohn’s disease goes untreated, the inflammation can be so dramatic that tunnels are created out of the wall of the intestine (fistula) and/or the lumen of the intestines narrows, not allowing food to pass through.
Alexis was also started on antibiotics to treat infections that had developed. Unfortunately, despite rapid arrangements for her first infliximab infusion, her disease continued to progress, and her symptoms persisted. Within a week, she developed what she felt to be severe constipation and excruciating back pain. Over the phone, Juliana Kennedy, MD, Assistant Professor of Pediatric Gastroenterology, advised bringing Alexis immediately to Mount Sinai Kravis Children’s Hospital to evaluate her for bowel obstruction. An MRI revealed the full extent of her condition, including a small bowel obstruction, a fistula, and severe inflammation.
“Her disease had already progressed quite a bit by the time she presented—it was likely smoldering long before diagnosis—making it very challenging for medications alone to reverse the damage from severe inflammation.” shares Dr. Kennedy.
This marked the start of a two-week stay at Mount Sinai Kravis Children’s Hospital, during which Alexis was cared for by a multidisciplinary team from the IBD Center. Physicians, nurses, and specialists worked closely together to develop and carry out a comprehensive plan for her care.
On her impressions of the care team, Victoria notes, “This team was amazing! I truly have no words for the level of care we received during this emotional time. Everyone made sure they explained every step in detail to us, and each doctor and nurse comforted me daily.”
Given Alexis’s history and current presentation, the pediatric gastroenterology team and the expert colorectal surgery team recommended surgery as the next step.
Dr. Kennedy notes, “Given that the disease had really progressed from chronic inflammation, there was scar tissue contributing to the narrowing her intestinal lumen that could not be reversed by medicine alone. In situations like this, it is best to remove that severely diseased bowel.”
Alexis underwent surgery to remove the diseased section of her small intestine and repair the penetrating damage to parts of her colon.
Though the procedure was more extensive than initially expected, the surgical team guided the family through every step, providing frequent updates, clarity, and reassurance.
Throughout Alexis’s hospitalization, her care extended far beyond medical treatment. Child Life Specialists from the Child Life and Creative Arts Therapy Department played a critical role in supporting her emotional wellbeing. Whether through art projects, conversations about Taylor Swift, or visits from the hospital’s beloved facility dogs, they helped bring moments of comfort and normalcy to long hospital days.
“Everyone who we met on that initial day was helpful, warm, and welcoming,” Victoria says. “They made us feel important and made Alexis’ condition a priority.”
Two and a half years later, Alexis is thriving.
Now a junior in high school, she manages her condition with injectable medication every eight weeks, allowing her to focus on academic and extracurricular activities. She maintains a 4.0 GPA while taking honors and advanced placement classes and preparing for the SATs. Alexis also took on a new sport, lacrosse, and earned the “Most Improved Player” award, a reflection of her perseverance and determination.
Victoria shares proudly, “Alexis’s stay at Mount Sinai and her experience with the doctors and nurses has paved the way for her.”
Inspired by the compassion, expertise, and support she received, Alexis now hopes to pursue a career in the medical field—one where she can care for others with the same empathy and understanding that made such a lasting impact on her and her family.
“Our time at Mount Sinai was only a few weeks, however, at the time, it felt like a lifetime,” Victoria says, “I couldn’t imagine being anywhere else and feeling as confident that my daughter was getting the best medical care possible—as well as the love and comfort.”