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Does anyone have EPI (Exocrine Pancreatic Insufficiency)?

Posted by slkanowitz @slkanowitz, Oct 15, 2023

The prescription enzyme I take is 368.00 a month copay. Without insurance it is over 2000.00 a month! I’m looking for an affordable over the counter pancreatic enzyme with comparable lipase dosage of 40,000 units. I would appreciate any suggestions, as the diarrhea caused by this condition is intolerable.

Interested in more discussions like this? Go to the Digestive Health Support Group.

cc8 | @cc8 | Apr 19 6:47pm

There is an organization for people with pancreatitis , mission-cure.org. I just watched the webinar by a nutritionist that specializes in pancreatitis on their site about so many things diet related and she went very in depth into the do's and don'ts on how best to be taking the enzymes. It was so helpful! I highly recommend you check out their website.

REPLY
psnead | @psnead | 10 hours ago

Hello,

I was diagnosed with EPI in 2023 and began the typical Pancreatic Enzyme Replacement Therapy (Creon). I went through several different diagnoses before being sent to a gastroenterologist and having blood work and fecal samples taken. I have more or less managed my EPI since then; however, I have frequent episodes of extremely foul smelling gas. I have also noticed that I have extremely irregular bowel movements, and these are almost always fairly loose.

What are your experiences with EPI? How do you manage the condition? Are there PERT options available besides Creon?

I have also recently started experiencing episodes of shortness of breath, followed by profuse sweating and abdominal pain that feels like severe bloating. When this happens I will typically lay down and begin to cool off, and after a few hours I will be able to either burp or pass gas and feel better in my abdominal region. A friend just told me about POTS and I have done some reading on the condition. I have not been diagnosed with this yet, nor have I seen a medical professional about it. From my reading, it seems that Pancreatitis, EPI, Gastroparesis, and POTS are all somewhat interconnected.

For those with Pancreatitis or EPI, have you found yourself being diagnosed with or experiencing symptoms of POTS? What do you do to manage your episodes? Have you also had problems related to Gastroparesis?

Thank you in advance for any information you can share with me!!

REPLY
1 reply
Moderator
Lisa Lucier, Moderator | @lisalucier | 4 hours ago
In reply to @psnead "Hello, I was diagnosed with EPI in 2023 and began the typical Pancreatic Enzyme Replacement Therapy..." + (show)
@psnead

Hello,

I was diagnosed with EPI in 2023 and began the typical Pancreatic Enzyme Replacement Therapy (Creon). I went through several different diagnoses before being sent to a gastroenterologist and having blood work and fecal samples taken. I have more or less managed my EPI since then; however, I have frequent episodes of extremely foul smelling gas. I have also noticed that I have extremely irregular bowel movements, and these are almost always fairly loose.

What are your experiences with EPI? How do you manage the condition? Are there PERT options available besides Creon?

I have also recently started experiencing episodes of shortness of breath, followed by profuse sweating and abdominal pain that feels like severe bloating. When this happens I will typically lay down and begin to cool off, and after a few hours I will be able to either burp or pass gas and feel better in my abdominal region. A friend just told me about POTS and I have done some reading on the condition. I have not been diagnosed with this yet, nor have I seen a medical professional about it. From my reading, it seems that Pancreatitis, EPI, Gastroparesis, and POTS are all somewhat interconnected.

For those with Pancreatitis or EPI, have you found yourself being diagnosed with or experiencing symptoms of POTS? What do you do to manage your episodes? Have you also had problems related to Gastroparesis?

Thank you in advance for any information you can share with me!!

Jump to this post

Hi, @psnead, and welcome to Mayo Clinic Connect. You'll see I've moved your post here to where others are talking about exocrine pancreatic insufficiency (EPI) so you can connect with others talking about that topic such as @cc8 @delilady @coooldad @yanina @agikam and others. Hoping they have input to share on experiences with EPI and managing it, and options beyond pancrelipase (Creon).

Also, psnead, you might check out these discussions on Connect about POTS:

- I have symptoms similar to POTS but was told it isn’t POTS
https://connect.mayoclinic.org/discussion/i-have-symptoms-similar-to-pots-but-was-told-it-isnt-pots/
- POTS
https://connect.mayoclinic.org/discussion/pots-4/
Have you noticed any patterns for when you experience foul smelling gas or loose stools, psnead?

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