1. < Digestive Health

Gastroparesis and EPI related?

Posted by susanh824 @susanh824, May 18, 2023

I was diagnosed with Exocrine Pancreatic Insufficiency a few months ago. Tried Creon, which seemed to help, but can’t afford refill. Still awaiting AbbVie’s decision on Creon Assistance. Because I am seldom hungry, my doctor ordered a gastric emptying test, which showed Gastroparesis. Do I just have bad luck, or are these two related? I also have Sjogren’s Syndrome, which I suspect might have caused these. Strangely, I never vomit, and only have nausea after a meal like steak. I was acutely ill with pain and nausea for four days after a steak and baked potato two weeks ago. Almost went to the ER because of the pain! But generally, my main symptoms are bloating and lack of appetite. I’ve lost over 80 lbs (which I needed to lose.) Any suggestions? I cannot take Reglan (causes extreme anxiety)

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asilyag | @asilyag | Feb 2 3:53pm
In reply to @susanh824 "Creon really helps! My weight loss really slowed down after I had been on it for..." + (show)
@susanh824

Creon really helps! My weight loss really slowed down after I had been on it for awhile. Still have no appetite.

Sure hope Mayo can help you! I am very pleased with my specialist out of Ohio State. Have also heard good things about a Dr. Cline out of The Cleveland Clinic.

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Who is your provider at Ohio State?

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1 reply
susanh824 | @susanh824 | Feb 2 5:11pm
In reply to @asilyag "Who is your provider at Ohio State?" + (show)
@asilyag

Who is your provider at Ohio State?

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Dr. Chakraborty. I know there is a list of people who are waiting to see him, but he is dedicated to his work and worth the wait. He answered a message from me at 1 AM once, shortly after I sent it.

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susanh824 | @susanh824 | Feb 2 5:16pm
In reply to @susan78 "Hello, you do not need Creon, Amazon sells Vital Pancreatic Enzymes, 90 capsules for $39.00, I..." + (show)
@susan78

Hello, you do not need Creon, Amazon sells Vital Pancreatic Enzymes, 90 capsules for $39.00, I use 2 bottles a month. It is the same dosage and works the same way, without the astronomical cost. I had a Whipple surgery 2017, lost my gallbladder, part of small intestine and probably a bile duct. Four years later I experienced massive diarrhea and went to see a gastrointestinal specialist who did an ERCP. Diagnosis was EPI. I changed my diet and have maintained a weight of 105 lbs. Now 4 years later I just had an ERCP, which showed “debris” which my gastro removed. He prescribed Reglan. After 1 pill I had a severe reaction of bloating and squeezing of my stomach and rib cage, I stopped the pills and went to the emergency room. My blood pressure reached 205/95 but the saline IV brought it down. They took a CT scan without contrast and diagnosed gastroparesis. I am again taking the 4 hour SIBO emptying test, I will keep in touch

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I am very fortunate to receive my Creon through an assistance program offered through the manufacturer, AbbVie. Even $78 per month would be too much for me.

Best wishes to you!

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susan78 | @susan78 | Feb 3 2:11pm

So sorry, hope the Creon works well for you

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