← Return to Does anyone have EPI (Exocrine Pancreatic Insufficiency)?

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@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!!

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Replies to "Hello, I was diagnosed with EPI in 2023 and began the typical Pancreatic Enzyme Replacement Therapy..."

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?