My diagnosis
It was just an ordinary day in high school and I ate lunch and I felt fine, but a couple of days later I had horrible stomach pain that wouldn’t go away. I was only 17 at the time. My mom called my doctor and she told me to go to the emergency room. They did my labs and bloodwork, showing that my lipase was higher than normal and that my pancreas was inflamed.
I was so shocked to hear this because I had never been told this before. I had to stay in the hospital for a week and a half, but my pain was not getting better so they decided to do an MRI on my pancreas, showing that my pancreas is scarred and diseased.
I got diagnosed in February 2023 with chronic pancreatitis and pancreas divisum, meaning that my pancreatic ducts did not form correctly when I was born.
I got a GJ tube and I got better for about a year, which I was so happy about.
Then a year later I got genetic testing and it showed that I have PRSS1 and CFTR gene mutations, meaning that my enzymes do not empty properly, meaning that it backs up and my pancreas eats itself, which is horrible.
I have been in the hospital 5 times in the past year due to pancreatitis and other illnesses that flare up my pancreatitis. I have been on nerve pain medications that have helped a bit, but not with pain, which can be so hard. What has helped is heat packs a lot of the time.
"I hope when people read this, they do not feel alone and everything will be ok."
My experience with Mission: Cure
I found Mission: Cure online because it said a lot about pancreatitis and, with myself having it, I decided to follow.
What I wish people knew
What I wish people knew about pancreatitis is that it is not just adults — kids can get it too. And that labs can not show elevation, but that doesn’t mean that we are not in pain.
Advice for fellow patients and caregivers
Advice that I would give to people is to not give up. Even though it sucks and it is really difficult, it will get better.
I hope when people read this, they do not feel alone and everything will be ok. I hope that one day there will be a cure because this disease SUCKS!! I hate to say this but I hope one day I can get my pancreas out because this sucks.
2026 Update
Nothing has really changed. I hadn’t been hospitalized for a year, but a month ago I was hospitalized for a flare up — though I’m doing well now! I also don’t have my GJ tube anymore, or my trach tube — I got those out this January. During my last flare up I got an NJ tube to help me through it, but I’m doing well now. I’m still in pain every day, but I’m doing well and can do my normal life, which I’m so grateful for. I can sometimes be in the hospital for flare ups, but still doing well!
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About Mission: Cure
At Mission: Cure, we are dedicated to finding effective treatments and, ultimately, a cure for pancreatitis. Through patient education, research, and advocacy, we strive to improve the lives of those affected by this condition.