Chaitanya has always feared doctor’s visits and hospitals. During his freshman year of high school, he began to feel pain in his stomach, and had no control over his bowel movements. Due to his fears, he refused to let his mother take him to the doctor. His mother, Sripriya, was anxious to seek care and a diagnosis for her son.
During this time, the COVID-19 pandemic had just begun, so restrictions were in place in getting an appointment quickly. However, his condition became critical, so he was quickly scheduled to see Barry Steinmetz, M.D., medical director, Gastroenterology & Nutrition Center and Outpatient Specialty Centers at MemorialCare Miller Children’s & Women’s Hospital Long Beach. Two days later, Chaitanya had an endoscopy, an examination of the upper gastrointestinal tract, as well as a colonoscopy, an imaging test of his colon for detection of abnormalities.
Only one week later, Chaitanya was diagnosed with Inflammatory Bowel Disease (IBD), called Crohn’s Disease. Crohn’s is a chronic inflammation of the digestive tract that leads to abdominal pain, anemia, severe diarrhea, fatigue, weight loss and malnutrition. After trialing different medications in an escalating fashion, he responded well to HUMIRA®, an injectable medication that helps adolescents manage Crohn’s disease and targets inflammation.
“Chaitanya’s care team were all understanding of how scared he was and did a fantastic job in helping build his trust. In the beginning of this journey, they couldn’t even get an Intravenous (IV) in his arm without him being so fearful,” says Sripriya.
Research studies have shown that there may be as many as 80,000 children in the United States suffering from IBD and about half of them have Crohn's Disease. Miller Children’s & Women’s Hospital board-certified pediatric gastroenterologists cover a wide-range of specialty and supportive care for patients suffering from IBD, Crohn’s s Disease or Ulcerative Colitis among other conditions offering a full-range of pediatric gastroenterology care, from diagnosis, treatment, surgical care and post-procedure and follow-up care.
"IBD and Crohn's Disease are becoming more common among children and can have long lasting effects if not properly treated when they’re young,” said Dr. Steinmetz. “It was crucial to get Chaitanya in our IBD Program and get him the examinations and testing he needed right away so we could start a treatment plan and improve his quality of the life. We are so thrilled to see him doing so well and thriving.”
The IBD Program in the Gastroenterology & Nutrition Center at Miller Children’s where Chaitanya is being treated is dedicated to the management of Crohn’s disease and ulcerative colitis in children and teens. This unique program incorporates a comprehensive care approach that includes advanced endoscopic procedures, age-appropriate medical therapies, including steroid-sparing biologics, and individualized dietary therapy.
“Miller Children’s is part of the ImproveCareNow network, an international, multi-center collaborative network that is transforming care and improving outcomes for children, adolescents and young adults with IBD,” says Dr. Steinmetz. “This partnership provides access to the latest advances in medical research and treatments so that patients can get better faster and stay well longer.”
The program supports children with IBD in attaining remission and optimizing quality of life. The program includes a holistic treatment regimen that may include use of evidence-based medications, such as antibiotics, mesalamine, steroids, immunomodulators or biologics.
Sometimes, special nutritional therapy is needed to successfully treat IBD in children, because their maturing bodies require more vital proteins, vitamins, calories and minerals. The doctors strive to avoid surgery, if possible, but sometimes a severe disease course might require surgery to repair or remove parts of the intestine. Finally, the program offers specialized psychological support to help the patient as well as the families manage the stress that comes with this disease.
As part of the IBD Program, Chaitanya is assigned a nurse navigator, nurse practitioner, dietician and social worker to ensure his treatment plan is carefully tracked and managed. The nurse navigator’s role is to ensure that all his doctor appointments and resources are aligned. His nurse practitioner oversees his care such as coordinating his therapies and prescription authorizations. Chaitanya also receives guidance from a registered dietician that carefully outlines his food goals for living with IBD and as a vegetarian. The dietician provides recommendations on vitamins and supplements which are important for managing IBD such as Vitamin D. IBD is a chronic disease that can affect a child’s emotional development. A social worker is also assigned to each patient offering specialized psychological support to help them cope with emotional challenges and manage stress.
“This is a lifelong condition that young patients like Chaitanya are learning to manage as they age. We offer the best resources and programs to help them live with IBD and Crohn’s as they move through all stages of their life. I’m so glad that Chaitanya will be attending college close by so he can continue his regular visits. I’m fortunate that with the rapid, recent adoption of telemedicine, I can stay connected to my other patients attending college out of state via our telehealth Zoom calls,” continued Dr. Steinmetz.
It has been three years since his diagnosis, and Chaitanya has been in remission. His bowel movements are stable, he is no longer anemic and has been healthily gaining weight.
Now, Chaitanya can live a healthy, normal life. He feels comfortable during his doctor visits that are now every four months, communicates how he feels to his physicians, and can even inject his own medication. “Before Chaitanya’s diagnosis, he was losing weight and was in so much pain. Today, he has perfect grades, performs in a marching band, competes in a Model United Nations, and will be attending UCLA in the fall to study political science. He doesn’t have to miss school anymore due to his Crohn’s Disease and is able to achieve so many amazing things without his health getting in the way,” says Sripriya.
Learn more about the IBD Program.