Does anyone have EPI (Exocrine Pancreatic Insufficiency)?

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!!

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!!

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!!

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!!

Hi
I have the EPI which requires Creon - expensive. In addition to that, I have developed SIBO (small Intestinal Bacteria Overgrowth. I think the two are related, with the SIBO creating the problem of constipation, diarrhea and lots of gas. That leads to trying to defeat the SIBO problem with expensive antibiotics. The antibiotics fixes the problem in the short run, but it comes back. I have not found a long term solution and I’m trying to work through fighting the SIBO. Sorry but I don’t have a good solution for you. There are other other enzymes pills etc but they are very weak compared to what I need for the EPI, thus I’m still on Creon.

I think I might have SIBO as well. I’ve been doing some research for it, and it looks like oil of oregano is as effective as antibiotics, and in some cases more effective. Have you ever tried that? I haven’t been diagnosed with it officially, but I’m almost positive that’s what I have. Apparently the oil is quite strong and you’re supposed to be under a doctor’s care when you use it and make sure you get the right kind of course, but it sounds intriguing to me. Good luck.

Hi
I have the EPI which requires Creon - expensive. In addition to that, I have developed SIBO (small Intestinal Bacteria Overgrowth. I think the two are related, with the SIBO creating the problem of constipation, diarrhea and lots of gas. That leads to trying to defeat the SIBO problem with expensive antibiotics. The antibiotics fixes the problem in the short run, but it comes back. I have not found a long term solution and I’m trying to work through fighting the SIBO. Sorry but I don’t have a good solution for you. There are other other enzymes pills etc but they are very weak compared to what I need for the EPI, thus I’m still on Creon.

I have this & am taking a new drug called Creon that has really helped me. However, it is very expensive, so had to apply for assistance from Angie , which I got. Really helps.