Chronic Pancreatitis

Posted by gimess @gimess, Jun 26, 2022

This Disease is a monster and it's so hard to manage it I have lost so much weight and had so many test but what is the best one please someone let me know !

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What is the most reliable test to find out what's really going on I'm so confused I have lost so much weight and sick of being sick ! And Bless you all

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There can be many causes of pancreatitis. Have the doctors determined what is causing yours? Has any treatment been suggested yet? How long have you had it?
Sue

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My pancreas is all calcified and getting worse what do you think the best test is to determine if there's more going on it's such a unpredictable disease? Bless You

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That sounds like a great question for your medical care team. Here at Connect we are people like you, dealing with medical issues, who share our journey and experiences. We are not professionals who can advise you on the best tests or treatments.
What do the doctors advise?

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@gimess

My pancreas is all calcified and getting worse what do you think the best test is to determine if there's more going on it's such a unpredictable disease? Bless You

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@gimess, there are so many possible causes and risk factors related to pancreatitis. It's also common to have co-conditions. Members like @sallycinnamon @blaise56 @renem and @harper7745 have all written about having pancreatitis in these related discussions.

– Do I have Pancreatitis? https://connect.mayoclinic.org/discussion/pancreatitus-1/
– Gastroparesis and mild chronic pancreatitis https://connect.mayoclinic.org/discussion/gastroparesis-and-mild-chronic-pancreatitis/?
– Chronic Pancreatitis/Sphinter of the oddi https://connect.mayoclinic.org/discussion/chronic-pancreatitissphinter-of-the-oddi/
– Chronic pancreatitis, mesenteric panniculitis… and more? https://connect.mayoclinic.org/discussion/chronic-pancreatitis-mesenteric-panniculitis-and-more/

I agree with @sueinmn that which tests are right for you is best discussed with your medical team. Do you have a confirmed diagnosis of chronic pancreatitis? Do you have other conditions? Have you considered getting a second opinion?

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2 yrs ago I had a normal BMI of 25, ate healthy foods, worked out 3-4x week, and woke up and had excruciating pain I had trouble breathing, called an ambulance and discovered I have Chronic Pancreatitis, familial hyper triclycidemia, and diabetes.
Spent 2 months in the hospital recovering.
Now, my BMI is 41, take 300units of U500 insulin 3 times daily, On a very strict 1800-2000calorie/day diet, Take 96,000units of creon to digest my food, at times still have dumping syndrome, have trouble exercising, my quality of life went from Awesome to horrible because of sudden pancreatic failure. I have seen every specialist, Now I’m told in order to lose weight I need R&Y Bariatric Surgery… I’m going to go for it because I want my life back. Am I a unicorn or has this happened to anyone else on this board.

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@christopher40

2 yrs ago I had a normal BMI of 25, ate healthy foods, worked out 3-4x week, and woke up and had excruciating pain I had trouble breathing, called an ambulance and discovered I have Chronic Pancreatitis, familial hyper triclycidemia, and diabetes.
Spent 2 months in the hospital recovering.
Now, my BMI is 41, take 300units of U500 insulin 3 times daily, On a very strict 1800-2000calorie/day diet, Take 96,000units of creon to digest my food, at times still have dumping syndrome, have trouble exercising, my quality of life went from Awesome to horrible because of sudden pancreatic failure. I have seen every specialist, Now I’m told in order to lose weight I need R&Y Bariatric Surgery… I’m going to go for it because I want my life back. Am I a unicorn or has this happened to anyone else on this board.

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Hello @christopher40 and welcome to Mayo Clinic Connect. Your diagnosis two years ago had to come as a major shock given how healthy you were.

The change in your BMI must be taking a toll on you physically and mentally so I am glad you've joined Connect to meet others who may understand your journey.

I wonder if you'd be willing to share a bit more about your 1800-2000 calorie/day diet? Are you eating high-quality, high-protein foods typically?

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@amandajro

Hello @christopher40 and welcome to Mayo Clinic Connect. Your diagnosis two years ago had to come as a major shock given how healthy you were.

The change in your BMI must be taking a toll on you physically and mentally so I am glad you've joined Connect to meet others who may understand your journey.

I wonder if you'd be willing to share a bit more about your 1800-2000 calorie/day diet? Are you eating high-quality, high-protein foods typically?

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My typical daily diet consists of boiled eggs, Tuna fish, or boiled chicken, nuts, Broccoli, and Fairlife protein shakes. Very little carbs.

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In the past month I had a trip to the ER that led to a diagnosis of diverticulitis. During this visit lab work also revealed extremely high levels of amylase and lipase. My provider said this could be indicative of pancreatitis. This is scary because I have a transplanted pancreas (nearly 17 years ago). Another concern is that my maternal grandmother died of pancreatitis nearly 6 decades ago. I realize modern medicine has come a long way since then, but I will for sure be looking into this!

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