My name is Meaghan. I live in Philadelphia with my husband Steve and my son Teddy.
My journey with pancreatitis began in 1993 when I was 8 years old and hospitalized at the Children’s Hospital of Philadelphia (CHOP) for acute pancreatitis. Just a few months before that, my older sister had her first attack of pancreatitis and about a year before that, my dad was finally diagnosed and treated after years of suffering through pain. Thankfully, I had immediate access to the incredible doctors and surgeons at CHOP and a lot of family knowledge about this condition. We all have the PRSS-1 gene mutation that causes hereditary pancreatitis. I also have a few first and second cousins with the same diagnosis. Like my sister and my dad before me, and many of our family members since, I had a Puestow procedure soon after diagnosis. I spent about a week in the hospital after my surgery and was back at school soon after that! In the almost 30 years since my surgery, I have only had pancreatitis a few times- each acute episodes that resolved quickly with a brief hospitalization. Many of my family members have had a similar experience and we all feel very blessed that despite having a rare genetic condition, we live normal, healthy lives. I’m excited to share more of my story with the NPF community in hopes that it is helpful for those struggling with this condition to hear about the ups and downs of my personal journey.
In the first 10 years after my Puestow surgery, I had no complications or pancreatitis episodes. Then in my teens and early twenties, I struggled some with episodes of gastritis and subsequent GI bleeding. Doctors could never really determine the cause of either of these issues, but they were likely related to my pancreas. I spent some time on pancreatic enzymes and proton pump inhibitors. In 2010, I had a specialized endoscopy to determine the cause of the bleeding and the scope caused pancreatitis and a perforation. Since then, I have not had any more endoscopies or procedures and have focused instead on a more integrative, non-invasive approach to GI health. I work closely with a nutritionist to address flare-ups of Small Intestinal Bacteria Overgrowth (SIBO) that we believe stems from my unique anatomy after the surgery, time spent on PPIs, and a course of antibiotics after the perforation. This approach has helped me tremendously and it is rare that I have any abdominal pain.
In order to maintain my GI Health and protect my pancreas from further damage, I have never had alcohol or smoked. I also avoid fried foods, steak, and a few other high-fat foods. Once a year, I have an MRI as a pancreatic cancer screening. I do not take enzymes as I have not been diagnosed with pancreatic insufficiency. I had my son in 2019 and other than gestational diabetes in the third trimester that resolved after his birth, I had a healthy and normal pregnancy.
In 2020, a few days after the official start to the pandemic, my son Teddy started vomiting. Our pediatrician suspected a stomach virus but knowing my family’s history, I pushed for them to test his lipase in the ED at CHOP. It was over 20,000 and he was diagnosed with hereditary pancreatitis. While it is devastating to me as his mom to know that I passed this gene to him, I try to stay hopeful knowing that my family members and I are thriving even though we have the same gene. He has an incredible team of doctors at CHOP and they have helped us identify some of his specific triggers (viruses and dehydration) and created a care plan that enables him to recover quickly from attacks.
Teddy’s diagnosis is what led me to the National Pancreas Foundation. I hadn’t really researched PRSS-1 or treatment options in the last 30 years because I was not experiencing any pancreatitis. While I am glad that these conditions are getting more attention and research dollars, I am so disappointed that the only additional treatment option is an even more drastic surgery (TPIAT). I hope and pray that the research will produce less invasive and more effective treatment options for Teddy and the next generation of children and families who struggle with hereditary pancreatitis.
I feel very blessed by my family’s support and by the brilliant and kind doctors, nurses, and nutritionists who have helped me (and Teddy) in our journey with hereditary pancreatitis. My biggest piece of advice, as both a patient and a caregiver, is to get a second, third, and even fourth opinion. I have seen many doctors over the years, all from the top major medical and pancreas centers. They have given me lots of different advice and I have had to piece together the plan of care that works best for me. I understand that the Puestow does not work for everyone, but most of my family members who had the procedure have never had pancreatitis again and rarely even think about it. While my personal journey with pancreatitis has not been free of challenges and setbacks, it has also not aligned with much of what I have read online about other patients’ experiences. It breaks my heart to hear about children who go years without a diagnosis and face an array of challenges to getting high-quality care.
For families out there new to a diagnosis or still struggling to find the right care plan, I am sending you strength and hoping that my story brings you hope.
