Hi, my name is Joyce Koshy, and I am 15 years old. I live in Pennsylvania and was diagnosed with chronic pancreatitis (CP) at 13 years old. I lived with CP for two years before my doctors, family, and I decided that undergoing a Total Pancreatectomy with Islet Autotransplantation (TPIAT) was the best path forward.
I’ve learned that CP doesn’t just affect the patient but also all of their loved ones. However, it has taught me countless lessons that have truly shaped who I am today. I eventually realized that although pancreatitis changed my life, it does not define my life. My hope is that, through my story, you’ll come to know that pain is never permanent.
The Journey That Changed Me
My journey began in March 2024 while my family was on spring break in Orlando, Florida. I woke up expecting a normal day but felt a slight discomfort in my stomach. Within hours, the pain became impossible to ignore. I couldn’t eat, became extremely nauseous, and fainted from how intense the pain was. Little did we know that instead of getting ready to go to Disney, we were getting ready for the exact opposite. Looking back, that day changed my life in ways I never could have imagined.
When I arrived at the hospital in Orlando, my doctors diagnosed me with idiopathic pancreatitis. Before that day, I knew absolutely nothing about pancreatitis. Because no one in my family had ever experienced it, the diagnosis came as a complete shock.
After that first episode, my doctors at CHOP (Children’s Hospital of Philadelphia) explained that it was possible I might never have another one. A few months later, however, I found myself back in the hospital around my birthday with another episode. It was clear from the scarring on my pancreas that this had been going on for longer than anyone realized. Even then, my family and I held onto the hope that maybe this would be the last time. That hope carried us for over a year, but with every hospitalization, it slowly faded.
Eventually, the episodes became more frequent. What had once been months between hospitalizations turned into weeks. Despite undergoing multiple ERCPs and stent placements, I continued developing pancreatic stones rapidly, and my quality of life slipped away. Genetic testing later revealed that I carry a CTRC genetic variant. This gene helps protect the pancreas from damage caused by digestive enzymes, and certain variants can increase the risk of recurrent pancreatitis.
Over the past two years, I spent countless holidays, school days, and special moments in a hospital instead of making memories with my friends and family. Although I usually felt “normal” between episodes, I never truly felt free. I didn’t have any friends going through the same experience, and I often felt alone and isolated. Every day, I wondered whether another hospital admission was waiting around the corner. Pancreatitis didn’t just affect me; it affected my entire family. Our lives became unpredictable, and that uncertainty was almost as difficult as the pain itself.
The hardest part wasn’t just being sick—it was feeling like life kept moving while I stood still. During the last few months of 2025, my episodes rapidly got worse. I knew I couldn’t continue living this way, always trying to catch up to the life I wanted to be living.
By this point, imaging had confirmed that I had CP. Although I never felt completely ready to undergo TPIAT, there came a point when it stopped being about whether I wanted the surgery and became about recognizing that I needed it. My pancreas had become severely scarred, and repeated ERCPs and stent placements were no longer helping.
When my doctors first recommended surgery, being overwhelmed would be an understatement. We had gone for an evaluation in 2025 to better understand what the surgery would involve, but I never imagined that less than a year later, I would be back to undergo it. Accepting that surgery was the best, if not only, long-term option was one of the hardest decisions my family and I have ever made.
I ended school early and knew I’d have to leave my loved ones for a little while. Despite knowing how much the surgery could help, I was truly upset about missing field trips, hangouts, and all the end-of-year activities, especially since this was my last year at that school. I finished 9th grade through online school. My mom, dad, and brother came with me to Ohio. Although my brother went back home to finish school, my parents never left my side.
On May 5, 2026, I underwent the TPIAT. I felt anxious, scared, hopeful, grateful, and full of faith. I knew that when I woke up from surgery, everything would be different. After 18 hours, I woke up in severe pain, adjusting to life with diabetes, barely able to move, and wondering how I would get through recovery.
I needed machines to help with breathing, and it felt impossible to have so many needs while being unable to speak up about them. My mind was filled with so many thoughts, and I felt trapped. Although I can’t remember much from the first week because of the medication, it was the toughest battle I’ve ever faced.
Nothing can truly prepare you for the early stages in the ICU—the IVs, alarms, and the constant fight to keep moving forward, even when you feel discouraged. Some days felt like two steps back, but as the weeks passed, I began to see how much progress was possible. I learned that the goal should always be progress, not perfection. Through every setback, I was surrounded by unconditional love that helped me keep moving forward.
One sentence that still feels surreal to say is: “I will never have another episode of pancreatitis again.”
In full transparency, recovery was—and still is—not easy. I want to be back to “normal,” but rebuilding the stamina I had before surgery has been more challenging than I ever expected. I face new challenges every day, but for the first time in over two years, my future doesn’t feel controlled by uncertainty. I no longer go to bed wondering if tomorrow will end with another hospitalization. As I start a new school year, that sense of freedom is something I will never take for granted.
The Power of Community
For a long time, I felt completely alone. Because CP is such a rare disease, I didn’t know anyone my age who could truly relate to my experience.
That changed when my team at Children’s Hospital of Philadelphia (CHOP) introduced my family and me to The National Pancreas Foundation (The NPF), especially after I attended Camp Hope in 2025. For the first time, I was surrounded by people who didn’t need an explanation. Everyone understood the hospitalizations, procedures, medications, diabetes, surgeries, and emotional weight that come with living with pancreatic disease. I was able to meet and connect with others who had gone through TPIAT, and hearing how much their lives had improved gave me hope and helped me make one of the hardest decisions of my life.
Through Camp Hope, the NPF, and the incredible teams at CHOP, Nationwide Children’s Hospital, and Ronald McDonald House of Columbus, I found a community that continues to encourage me every step of the way. Whether it was my constant need for buckets of heat packs or our never-ending questions, the doctors, nurses, and various therapy groups went out of their way to make my hospital stays and recovery easier. The support, kindness, and care my family and I received were truly a blessing, and it is something we will forever be grateful for.
Three Lessons That Changed My Life
Living with CP and undergoing TPIAT has changed me in countless ways. It has taught me grit, gratitude, and the importance of having a strong community around you, even during life’s hardest moments.
Beyond all the pain I have experienced, I believe there is a purpose. I hope to continue advocating for children with pancreatitis and increasing awareness so that no child ever feels like they have to face this diagnosis alone. I know what it feels like when a grown adult, or even a health professional, looks confused when they see a child with such an uncommon disease. You should never feel guilty for advocating for yourself. Nobody knows your body better than you do.
It is a harsh truth that not enough people understand pancreatitis. I hope that by sharing my experiences and what I have learned, I can help make the journey a little easier for other kids and families.
1. You grow through what you go through
The hardest moments of my life ultimately became the moments that shaped me the most. I can’t say I would ever choose to relive this journey, but I can say it has helped me grow in my faith, my character, and through the incredible communities I now trust wholeheartedly.
2. It is okay to not be okay
Eventually, I realized that healing isn’t just physical—it’s emotional and mental, too. There were days when I felt scared, frustrated, and exhausted, and that was okay. I learned that recovery is not linear.
I often felt discouraged when doctors would ask me to rate my pain on a scale of 1–10 and I would respond with numbers over 5. I constantly asked myself, “Why did this have to happen to me?” I would spiral into endless what-ifs, worries, doubts, and questions, but none of that helped me heal. It only left me mentally exhausted.
Even on days outside the hospital, I wanted to bury the pain and frustration that came with CP. When I finally allowed myself to acknowledge how I truly felt instead of ignoring those emotions, I began to heal in ways I never expected.
3. You are not alone
Whether it’s your family, friends, doctors, or the incredible community through The NPF and Camp Hope, there are people who genuinely understand and want to support you. Asking for help isn’t a sign of weakness; it’s a reminder that we were never meant to carry life’s hardest moments alone.
I would never have gotten through the last three years without my family, friends, medical community, and faith community.
For Anyone Walking This Path
This disease is incredibly difficult, but it is only one part of your story. Be proud of yourself for continuing forward despite the physical and emotional challenges you face. There will be hard days when giving up feels like the easiest answer, but there will also be days filled with healing, hope, and people who understand you more than you realize.
The NPF gave me far more than resources. It gave me hope, friendships, and a community that continues to remind me that I was never fighting this disease alone. Pancreatitis has changed my life, but it is not taking away my future. This disease does not define who I am, and it most certainly does not define you either.
Caregiver’s Perspective
(Joyce’s Mom, Shaloo shares her experience as a caregiver)
The biggest challenge was the uncertainty of episodes – when will it occur? How much pain? How do we plan for healing? It often seemed like invisible pain where Joyce would be ok one day and suffer from severe pain the next day. It was hard for us all to learn to listen to her body and what it was telling us.
Jeff (dad) and I cannot imagine getting through this journey without our faith and the community that surrounded us with prayer and support. No one should walk this journey alone. Not the parents, siblings, not the child – this is a shared battle.
Giving Joyce a Voice in Her Care
Joyce has always benefited from a great medical care team that always spoke directly to her and explained the various complications. We also realized that we identified questions after the time with the doctors and nurses, so we started writing timely questions on shared notes pages on our phone and sharing it with each other. We would use the shared notes pages for Joyce to ask the questions that she considered in later discussions.
They also provided guidance and collaborated with us on the development of the Pediatric Pancreatitis Passport and Action Plan, a resource created by the Pancreas Committee of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) in partnership with patient advocacy organizations, including The NPF, Rebecca’s Wish, and Mission: Cure. The Passport is designed to help children and families better understand and manage pancreatitis.
Dad and I quickly realized that with chronic pancreatitis, Joyce had to use more words than a pain scale to explain her points of pain and frustrations, as it was not always a clear answer on what works best.
Supporting Joyce’s Sibling
Joyce has a twin brother, Jadon. Whenever possible, we included him in appointments and conversations throughout Joyce’s journey so he could better understand what she was experiencing and learn how to support her. We also made sure they stayed connected, whether through a quick text or FaceTime. When we had to be away with Joyce, we leaned on our community of friends and family to be there for Jadon, helping him feel supported and cared for during those difficult times.
Helping the Family Understand the Journey
I wish physicians and healthcare teams understood the amount of education and community that is required for families to fully understand this journey. We were incredibly grateful for resources like The NPF, Rebecca’s Wish, Mission: Cure, and Camp Hope. Each organization helped our entire community better understand her condition and learn how to support her.
Before we could even discuss the 504 plans with the school, we shared all of what was happening with Joyce. The school understood our uncertainty and that we were navigating a new world. We started summarizing our learnings and educating all those who would be around Joyce. We were on a tour of educating family, friends, teachers, even our employers so that all those around could appreciate the need for patience and time during episodes.
Early on, we partnered with Joyce’s school to establish a 504 Plan. Her middle school and high school became partners in the journey. Joyce was supported by guidance counselors, the school nurse, teachers, coaches, and friends who are now her allies in pancreatitis.
