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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Profile picture for yukisun @yukisun

Hi Susanh824,
Thanks for reply. I am 68 and was diagnosed with both GP and EPI 2 - 3 years ago. These issues started out "mild", but gradually became worse. I had 46% of food remaining after a 4-hour gastric emptying test. I too have had multiple abdominal surgeries before; which I think may have caused my issues. My Doctor thinks the cause is "idiopathic", but I don't think so. It was 3 years after my Nissen Fundoplication surgery when I was diagnosed. Now my Doctor is talking about a new procedure for GP - Gpoem.

It seems like we have opposite symtoms. My diarrhea and your constipation. I don't know if you know about a prescription drug "Motegrity"? My Doctor prescribed it for my GP, but I am afraid to take it due to its' side effect of diarrhea. This drug is FDA approved for treating constipation in US, but Doctors in Europe prescribe it for GP according to my Doctor. Maybe you can ask your Doctor if Motegrity might work for you since you have both GP and constipation. I too lack interest in food. I live on Boost and Ensure even though they cause me to have diarrhea. I wonder if I am the only EPI patient who has this issue? Did you ever drink one of these protein drinks and have had diarrhea?

Best to you too,
Yukisun

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I suffer from diarrhea also but have not been diagnosed with EPI, but have diarrhea frequently & can’t leave the house…. Sometimes I know it’s related to being lactose intolerant, but never knew of EPI possibilities…. Thank You….

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Profile picture for peggyjean @peggyjean

I suffer from diarrhea also but have not been diagnosed with EPI, but have diarrhea frequently & can’t leave the house…. Sometimes I know it’s related to being lactose intolerant, but never knew of EPI possibilities…. Thank You….

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I would definitely get tested!

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Profile picture for susanh824 @susanh824

I would definitely get tested!

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I have a routine appointment with primary tomorrow….. Thanks For Info!🥰🎊

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I am joining the club with both Gp and EPI. I have had GP for many years. Stomach had air bubble the size of a football and I would get intractable hiccups from the pressure on diaphragm. Terrible constipation from lack of peristalsis throughout my gut. Then came the diarrhea from EPI. I have found Vital pancreatic enzymes (stores and Amazon) are almost identical to Creon in lipase units but $40.00 for 180 capsules. I also have several autoimmune diseases and was diabetic when the EPI started in 2023. I am 74. Diabetes is a risk factor for both conditions. I’m thankful we have each other to share information and support for putting up with these awful issues!

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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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Profile picture for susanh824 @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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Profile picture for asilyag @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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Profile picture for susan78 @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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So sorry, hope the Creon works well for you

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Hi. Yes. EPI and gastroparesis can be related. Also EPI and dumping syndrome can cause scarring in your upper intestinal tract and cause a similar slowing of bowel emptying. But the EPI alone can cause loss of appetite and the other symptoms you mentioned. I am recently diagnosed and have been reading everything! LOL! I was also tested for gastroparesis but there wasn't enough food left after 4 hours for a diagnosis yet, my GI doc always sees impacted food in my intestines, probably from the dumping syndrome. I've had this for over 10 years and didn't know it. So I've had significant damage to my pancreas with EPI and severe protein calorie malnutrition. Some days I eat well and some I have absolutely no interest. It's important to try to stay hydrated. Malnutrition is nothing to play around with. Sending you big virtual hugs - I don't think many people are aware of how serious and life changing this diagnosis is. I hope this helps.

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