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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bzinzy | @bzinzy | Jan 6 7:17pm

I’ve been dealing with such for 4 mos , any luck on your end ? I’m being referred to Mayo , I’m so scared

susanh824 | @susanh824 | Jan 6 7:30pm

In reply to @bzinzy "I’ve been dealing with such for 4 mos , any luck on your end ? I’m..." + (show)

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.

bzinzy | @bzinzy | Jan 6 7:37pm

In reply to @bzinzy "I’ve been dealing with such for 4 mos , any luck on your end ? I’m..." + (show)

Please tell me it can get better

bzinzy | @bzinzy | Jan 6 7:38pm

In reply to @susanh824 "Creon really helps! My weight loss really slowed down after I had been on it for..." + (show)

I struggle taking enzymes , So can the EPI improve when the flare up calms ?

susanh824 | @susanh824 | Jan 6 7:46pm

Mine definitely has. Because I have two different conditions, I alternate between constipation and diarrhea. But they are manageable. My biggest problem is lack of appetite. I’m close to being underweight now.

bzinzy | @bzinzy | Jan 6 7:53pm

In reply to @susanh824 "Mine definitely has. Because I have two different conditions, I alternate between constipation and diarrhea. But..." + (show)

I have both as well , I don’t have oily poos . Not anymore . I’m hoping they both get better . They see no issues with my pancreas and scratching their heads . But since covid my body is full of inflammation. I miss food , I’m on a feeding tube for now to help with nutrition. I miss hunger … food ;((

bzinzy | @bzinzy | Jan 6 7:55pm

In reply to @susanh824 "Mine definitely has. Because I have two different conditions, I alternate between constipation and diarrhea. But..." + (show)

I’ve lost 30 lbs in the last few mos .. I’m so fed up with this

susanh824 | @susanh824 | Jan 6 9:35pm

In reply to @bzinzy "I’ve lost 30 lbs in the last few mos .. I’m so fed up with this" + (show)

Oh, I’m so sorry you are going through all of that! I’m not at the feeding tube stage yet, but probably will be within a few months if I can’t stop losing. The picture with my post is very old, obviously! May I ask how old you are and what part of the country you are in? There are some good Facebook groups for each condition, but I don’t know many people like me who have both. Does your doctor have any idea how your vagus nerve became damaged? Wishing you a much healthier 2024!

bzinzy | @bzinzy | Jan 6 9:48pm

In reply to @susanh824 "Oh, I’m so sorry you are going through all of that! I’m not at the feeding..." + (show)

Thank you , I feel like I have an autoimmune disorder. Even though I can’t get a straight answer on that . I have all the symptoms but no diagnosis. I’m 45 and in Waco Tx . Got referred to Dallas Mayo Clinic. I pray to get some answers . Things are upside down and I feel like I’m too weak to function ;((( I deleted FB , I’m so overwhelmed and couldn’t take it ;((

susanh824 | @susanh824 | Jan 6 10:10pm

I’m 65, and started slowly losing weight without trying in 2020. I originally thought it was great that my appetite had lessened, But in early 2022, the weight loss really picked up speed. I was tested for all sorts of cancer, then stumbled across this site and someone suggested EPI as a possibility.