How Has Pancreatitis Impacted You?
It has taken me a while to get the courage to share my story. Today is a particularly bad day, I am in bed with my kids and dog while we cuddle and watch tv shows. They know that I can’t help being sick, and they are all so supportive of me. My family and my animals have been my rock through all of this. After years of pain in my stomach, a gallbladder removal, and begging my doctor to pay attention to me, I was finally diagnosed with Chronic Pancreatitis in December of 2023. My doctor kept brushing it off as chronic appendicitis or diet problems, or needing to lose weight; but as the steatosis got worse and I rapidly began to lose weight, he finally took me seriously. My ultrasound revealed cysts in both my pancreas and liver, and the CT scan confirmed that it wasn’t all in my head.
At first it was a relief to know what was wrong, but as I continued to battle the same debilitating symptoms I realized that the diagnosis was only the beginning of the battle. My eyesight started to get worse, and in 6 months I went from .25 and .50 to 1.25 to 1.50. On my doctor’s advice I went on a plant-based diet, but found that I still couldn’t eat a lot, and I am continuing to lose weight. I have been doubled over in pain from green grapes, or from a small cup of yogurt. I have reduced almost all my fats and gone off sugar, but some days I will be in pain even though I have followed all the rules.
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Last year I was such a healthy human. I would wake up at 5 am and work out for an hour before work, and then finish the day with a 5 km hike. I have lost over 30 lbs now and have to have a nap after work. However, I refuse to let this disease take away my life. I take my enzymes every day, do gentle exercises and try to get my dog out everyday for a walk. I still hike but not as intensely as before. There is still beauty in the world and I try to find joy in my life. I know that I will still have bad days, but there is hope.
Mission Cure has been such a shining light during my journey. I had no idea where to begin when my doctor gave me the news. I knew that other people had to be out there that were on the same journey. I stumbled across their Instagram page and right away I knew that I wasn’t alone.Â
To read experiences of people who had been through the same journey was so fulfilling. I wasn’t alone, and others also knew what I was going through. I was able to make connections and learn from others what I needed to do to get myself out of bed each day.
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What Do You Wish People Knew About Pancreatitis?
What I wished people knew about pancreatitis is that it is different for every individual, and the pain is very real. I don’t know what it is that will set my pancreas off, and it could be something that was okay a few days ago, but not okay today. I live each day with pain, sometimes it is dull, and others are like today, where I am bent over clutching my stomach in pain. I am exhausted, but I will not stop fighting.
What Advice Would You Give to Fellow Pancreatitis Patients?
Don’t give up! There are other warriors out there fighting just like you. On days where it seems like too much reach out to your community and family. They are there for you, and want to hear about your bad days. Relish the good days, and always take your PERT!
Share Your Story
Your story matters. If you’re living with pancreatitis or caring for someone who is, your experience can inspire and empower others who are going through the same thing. That’s why we want to hear from you! Share your story with us by clicking the button below.
