Living with chronic pancreatitis

Posted , 7 users are following.

I’m curious about others dealing with chronic pancreatitis. Any details you’d like to share about what you’ve been through/deal with on a regular basis from CP, I’d certainly appreciate. 

My story starts in August 2013 when I had my first acute pancreatitis attack. I’d been having stomach pain throughout the day, but I woke up in the middle of the night to it turning extremely sharp. I made it to the bathroom, but had to call for my husband to call the paramedics because I couldn’t stand. CT scan and blood work showed pancreatitis and I spent the next several days on bowel rest trying to heal. I had a major complication from over-fluid through the IV and spent the next several days in ICU. 

After that hospital stay, I just didn’t seem to return normal at home. I was still in constant pain and throwing up randomly. Within two weeks of being home, I had another attack that landed me back in the hospital. This time, they found pseudocysts that eventually needed surgical intervention. During that surgery, in November 2013, I had a small part of my pancreas and colon removed in addition to the cysts. After the surgery, I developed MRSA and had to spend just over a month in a select hospital getting intense antibiotic treatment. 

2014 was a good year. I didn’t have any attacks, but would have some occasional nausea/slight discomfort. In January 2015, I had another attack that landed me back in the hospital. During that stay, I developed jaundice due to a narrowing in my bile duct. I had stents placed to open the duct and was home in a couple weeks. In May, I was admitted to the hospital with diabetic ketoacidosis, which is when I was officially diagnosed with diabetes due to lack of insulin production from my pancreas. 

I had several flare ups over the next year. The pain and nausea were every day things for me to deal with. The stents were not working to keep the bile duct open so I finally had a biliary bypass surgery in March 2016. They removed my gallbladder during the same surgery. 

I’m still sick all the time and make frequent ER visits for pain control/hydration. I try to treat myself at home the best I can, but will go to the hospital when I’m unable to keep fluids down on my own. 

Can anyone else relate?

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6 Replies

  • Posted

    I’ve been through the same pain as you I’ve been in and out of hospital with chronic pancreatitis I had to spend a week off work recovering from this the pain is literally excruciating 
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  • Posted

    I suffer from severe pancreatitis and was in hospital for nearly a month, I.c.u for 3 days and in constant now home but the pain has not stopped. It has also developed into hypercalcaemia secondary to the pancreas. I have a appointment with the surgeon in 6months and was on a tube through my nose and in my arm was being fed on both , I was on drips everyday for three weeks.
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    • Posted

      I’m no stranger to the feeding tubes. The ones through the nose are just dreadful! I wish you the best with your appointment with the surgeon. Hopefully you get some relief in some way or another. 
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  • Posted

    Hi Missy00195.

    Can i ever relate to you! I had my first pancreas attack in May of 2004 when i was pregnant. After having my baby girl (who is now almost 14) i was diagnosed with a pancreatic divisum. A birth defect of my pancreas. I had about 5 ERCPS to try to get better drainage of my pancreas. I finally had the Whipple surgery in December of 2016. It did help with pain. In 2018, ive had emergency appendectomy and in May of this year, i had emergency bowel obstruction surgery. All the while, i need to work full time bc the health insurance and most of our earnings are through me. Luckily, i work for the county of Los Angeles as a psychologist for the last 20 years. They are very good to me. I do have a pain doctor bc too many trips to the ER in LA and they peg you as a drug seeker even though they know the history. If you dont have one, try to get a gastroenterologist who specializes in the pancreas and a good pain doctor. Good luck.

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  • Posted

    To put it shortly, this sucks. Any reservation I had about terminal illness has vanished. I see the world in a different light and it's not pretty. Wish I could impart a more positive outlook, but I can't. God bless...

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