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.

- Does anyone have EPI (Exocrine Pancreatic Insufficiency)?
https://connect.mayoclinic.org/discussion/does-anyone-have-epi-exocrine-pancreatic-insufficiency/
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?

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.

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How do you manage the condition?
Each person finds a personal set of workarounds based on the symptoms, IMHO
In my case:
- Uncoated enzymes for pain and coated for deficiencies (more here https://www.youtube.com/watch?v=AlazwiXRjY0&ab_channel=Mission%3ACure )
- Home-made food only with comprehensive recipes/ingredients to manage constipations/type 2 diabetes (low carbs in my case, which is not advisable for kidneys and pancreatitis itself tbh)
- 2 hours of exercising after a meal (keeps me away from glucose spikes)
- Intermittent fasting (or no snacking, I should say ) to stay in moderate ketosis (keeps me away from hypoglycemia and gives the pancreas a rest)
- NTD + T3 to boost up metabolism a bit (helps with constipation and gastroparesis)

Managing my health is a full-time job for me now lol

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Are there PERT options available besides Creon?
FDA-approved:
Creon
Pancreaze
Zenpep
Ultresa
Viokace
Pertze
Source ( thank you @cc8 for sharing!!! ) https://mission-cure.org/managing-pancreatitis/pancreatic-enzyme-replacement-therapy/#elementor-toc__heading-anchor-4
Plenty of non-FDA-approved from:
+ Metagenics, Biotics, Pure, etc
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From my reading, it seems that Pancreatitis, EPI, Gastroparesis, and POTS are all somewhat interconnected.
100% + a bunch of other diagnoses as a consequence when one of the vital hormone-secreting organs is damaged and not performing its exocrine and endocrine functions

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Have you found yourself being diagnosed with or experiencing symptoms of POTS?
Funny, I never correlated my symptoms to it
Always attributed it to the low blood pressure, neuropathy, etc but POTS, thanks for sharing..
It's like umbrella diagnosis, tho
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What do you do to manage your episodes?
So, with a damaged pancreas, you wouldn't have enough bicarbonates
(The pancreas secretes bicarbonate (HCO3-), which is crucial for neutralizing the acidic chyme that enters the small intestine from the stomach.
In my case, I also have a bile reflux (or duodenogastric reflux) when bile contents go back up into the stomach
So I am finding a balance between taking external bicarbonate (electrolytes) and vigorous jumping with taps on my back to pass all the gases and burps

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Have you also had problems related to Gastroparesis?
From my experience, the suggested low-fat diet for pancreatitis is not optimal long-term
During the acute stage it's helpful, but once the pancreas heals, I would introduce a small amount of fats back slowly with PERT.
Otherwise, the bile is not gonna flow
- hence delayed stomach emptying, SIBO
- hence liver detox is not gonna work which, in turn, causing other problems with cholecystitis/stones
- hence constipation and nutrient deficiencies
- etc.

It can be a spoon of MTC added to your coffee or Omega oil after steamed broccoli, so on..

There are very few cardiologist interested in POTS. Few have tilt tables to test on. With long Covid I am getting more patients that I suspect have POTS. Even in L.A. I only have a handful of interested C.V. Groups willing to take on these challenging cases.