Elizabeth’s Story of Idiopathic Pancreatitis
Hi, my name is Elizabeth S., and I have idiopathic chronic pancreatitis. I am 29 years old and live on Long Island in New York. My first documented case of pancreatitis was in September of 2020.
When it first started, I thought I had a stomach bug. It then started to become a daily thing in my routine. I felt like no one was listening to my symptoms. I had 2 endoscopies done to check everything out. I was told there was just some sludge in my gallbladder and things should settle down. My gut was screaming for help, and I was made to think that this would be something that would blow over.
My symptoms included a lot of vomiting for hours a day until there wasn’t anything left in my system, oily and pale colored stools, and excruciating pain in my abdomen radiating to my back, chronic fatigue, and loss of appetite. I had these symptoms for 2 years prior to my first documented case. One night I was getting ragingly sick, and my father rushed me to my local emergency room where I spent 8 full days in the ICU. I was diagnosed with a severe case of pancreatitis with enzyme levels in the 4,000s and was told that it should really be my only episode if I continued to maintain a healthy lifestyle, from diet to exercise. That hospital stay scared me so much, to this day I am very cautious about what I put in my body or expose it to.
My hospital stays were frequent, but since my case was so complex, I went through 4 medical systems here in NY before finding my forever pancreas dream team at Dartmouth Hitchcock Medical Center. The doctors decided in January of 2021 to place a PEJ feeding tube into my small intestine and have me NPO to have my GI tract catch a break. I was to use the supplemental nutrition to help maintain stable weight and make sure I was nourishing my entire body while making sure not to disrupt my resting GI tract. In those 6 months my hospital stays slowed down and I had home care. The majority of medication, fluids, and the feeding tube formula (my food) went through the tube, so it almost acted like an IV.
My illness progressed rapidly over 2 years causing me to have a subtotal distal pancreatectomy with an auto islet cell transplant and a splenectomy in April of 2022. This removed a large portion of my pancreas and my entire spleen. The auto islet cell transplant is something relatively new in the pancreas world and I was fortunate enough to be a candidate to have it done. They extracted the healthy islet cells from the portion of the pancreas that was removed, and they then implanted those healthy islet cells into my liver. The islet cells are in charge of making insulin for your body. The liver trained these cells to make insulin over time, preventing me from becoming a type I diabetic, honestly one of the coolest and luckiest things to happen to me!
How Online Support Groups Helped Elizabeth
As I became more open about my disease, I quickly realized how many people are suffering from pancreatic diseases and that so many different types that exist. I was always reading up on pancreas information, calling facilities and asking questions. I joined online support groups where I was able to share my own story, listen and read other patient stories and what they were going through. This created a safe space for me where I felt I was never judged, only lifted up, because unfortunately we all related to one common denominator, an agonizing cranky panky. My advice is to never compare yourself to someone else, as pancreatic disease can be so different in so many ways.
Genetic Testing
My family does not have a history of pancreatitis, but my parents were concerned they might have passed it on to me. They deeply dove into the family tree looking for connections. Nothing really showed pancreatitis. Through Memorial Sloan Kettering Cancer center, I had extensive genetic testing done. I met with some doctors who asked me a lot of questions diving into my family tree. They then took a blood test and worked their magic. I never even knew this existed with benign diseases and cases. I found it interesting that through this testing they could tell you who would be at risk, if I could pass it down if in the future, I decide to have children, or if somewhere along the family tree it skipped a generation or so and I ended up getting it. The science involved was fascinating.
How It Affected Her Mental Health
My pancreatitis 100% affected my mental health. It kept me isolated in my home, it sent me to the hospital frequently, it limited my social life, prevented me from exercising and playing sports, something I loved for my entire life, and made me angry. It gave me anxiety wondering when my next episode would be sending me to the hospital. I missed my family, my dog, my own bed. I used online therapy, chat groups, as well as an actual therapist to help keep my anxiety somewhat controlled and get me out of the house. Stress has a negative effect on the body. With my body always being in fight or flight mode it was already stressed; the extra anxiety was making me sicker. My assistance with my mental health and my hopeful and positive outlook is most likely 90% why I am still here today. Pancreatic diseases are very lonely and isolating. Behind my smile was someone who was in excruciating pain and was suffering physically, mentally, and emotionally. I never thought this small organ could do so much damage to someone’s body and to one’s mental health.
Being Your Own Patient Advocate
An important tool is patient advocacy. I was my own patient advocate. I kept every test result, scan, CD, blood test, doctors visit all in my personal files and my pancreas files were getting to be large and lengthy. I went through 4 medical systems before finding Dartmouth Hitchcock Medical center. I felt that if I wasn’t on top of my records the disease would win. I’m an athlete, I play to win, and I don’t like to accept defeat, so I tried to take the emotion out of every appointment and instead treated it as a State final game or match, how am I going to go in this with my game face on and leave with a win and not a loss. I would show up with questions and sometimes subcategories to those questions and wouldn’t leave until they were all answered. Advocacy and using your voice are key when dealing with your own health, it’s your body you’re in charge!
Patient advocacy + mental health help = good “cranky panky” management.
Online Patient Portals
What is also helpful are online patient portals. These portals help you see test results from blood draws to scans, care team notes, which doctor you met with and after summary visits and more! You can also message the care team and even choose or to describe what the nature of the message is about. It’s kind of like a text message directly to your doctor and care team, which is all documented, so nothing gets lost in translation. I have a care team here where I reside in NY, but my main pancreas home is all the way in NH. It would be a lot to drive the 5 hours for a pancreatic flare. So sometimes while I’m in the hospital here in NY or even after an appointment I can screenshot notes, labs etc. or just e-link the accounts so all the doctors are informed.
How NPF’s Resources Helped
I found the National Pancreas foundation online.” Through their social media platforms, I found suggestions for chronic illness groups and other pancreas pages and platforms. Through NPF I have found alternative techniques, facilities, cookbooks, meditation for pain, collaborations with centers who study pancreatic disease and pain, and patient to patient chat rooms where people can ask questions and tell their own story but most importantly how to DONATE to advance research and science to help finding a cure or managing the disease. They also keep posting new patient stories which become more evolved as science evolves. They really have helped me both mentally as well physically and have put me in touch with some great people, doctors, and facilities.
You might not think so but when you share your story someone is reading it and taking notes as part of their survival guide. Have hope and wear purple proud.
