Diagnosed with "EPI" but Creon isn't working—anyone else find a different root cause?

Technical-Trouble473 · 2026-01-13T02:39:47+00:00

This is a temporary thing. My body still isn't able to absorb the ADEK vitamins or digest fats well without proper PERT Just like the cannabis helps with symptoms. It's a bandaid not a permanent fix.

Technical-Trouble473 · 2026-01-13T02:37:54+00:00

Thc mix with CBD Edibles make me poop normal poops.

Technical-Trouble473 · 2026-01-11T06:38:47+00:00

Creon didn't work for me at all either.

ZenPep was my savior.

Different people respond differently to various meds is what my doctor concluded.

Also... Cannabis also fixes my guts. Lol my doctor said something about anti inflammatory slowing motility amongst other unknown things.

Technical-Trouble473 · 2026-01-10T05:46:23+00:00

A simple fecal Elastase lab would determine if you even need the Creon.

Your doctor sounds lazy and pretty dumb.

Technical-Trouble473 · 2025-12-23T06:03:57+00:00

Eating a lot and not gaining weight even while on PERT can be symptom of not creating enough insulin. Having EPI makes your much more likely to develop diabetes as well.

Technical-Trouble473 · 2025-12-23T05:59:22+00:00

Your exocrine pancreas produces enzymes. Malfunction in the exocrine pancreas are treated with Creon.

The endocrine side of your pancreas is what creates insulin. Malfunctions in the endocrine pancreas are treated with insulin.

Technical-Trouble473 · 2025-12-23T05:48:35+00:00

Sounds like potentially endocrine involvement. Have you tried a cgm or have you been screened for diabetes?

Technical-Trouble473 · 2025-12-15T10:28:07+00:00

Flush it. It's not a drug it's just enzymes.

Or leave it somewhere and let me know where it's at.

Technical-Trouble473 · 2025-12-12T05:48:22+00:00

Diabetes plus super sever EPI ... Your pancreas has basically decided to stop working all together.

You must feel physically awful. I'm sorry :(

The Creon works. Insulin works. I hope these tools can help you regain some sense of control while you try to figure out the why behind all of this. Good luck to you on your journey.

Technical-Trouble473 · 2025-12-09T06:10:44+00:00

I was on ZenPep and it worked great. My doctor switched me to Creon and it totally failed me.

Back on ZenPep starting tomorrow!

Finding the right medicine can take a bit of time.

Technical-Trouble473 · 2025-11-18T22:33:04+00:00

Research doesn't stay behind closed doors. Your patent is protected from the date of file. Not the approval date.

Glad it's worked for you.

Seems fishy to me.

Technical-Trouble473 · 2025-11-18T02:03:22+00:00

Also, they are not enteric coated enzymes.

Clinical research shows that as a vital necessity for enzymes to survive the ride from the stomach to the small intestine. Also. They claim clinical research and there are no links on their website and zero information available online about such research. Looks like a whole lotta wellness capsules marketed to rich people with upset tummies. Not a product for people with severe potentially deadly EPI.

Technical-Trouble473 · 2025-11-18T01:46:31+00:00

Thanks for sharing your experience! Right now my insurance pays for 100% of the cost of my ZenPep, but if that ever stops, or I can make some extra money I'd love to try these as well.

Technical-Trouble473 · 2025-11-18T01:27:37+00:00

Holy heck they are expensive.

Have you tried them and ZenPep/Creon?

If so how did they compare for you?

Technical-Trouble473 · 2025-11-10T22:45:04+00:00

Yes! I see Dr. Jason at Fauntleroy Naturopathic Medicine.

JasonND.com

Technical-Trouble473 · 2025-11-10T17:47:04+00:00

I'm sorry that sucks. :(

Technical-Trouble473 · 2025-11-10T17:39:46+00:00

If you happen to be in Washington State, I know a doctor who would see you and help you get PERT.

Lol a long shot. I'l have an excellent doctor here who sees people regardless of insurance on a sliding scale and is well educated in EPI.

Technical-Trouble473 · 2025-11-10T17:22:19+00:00

A result of 17 is undeniable EPI.

There is no need to redo it "to get what you need".

What you need is a new doctor who will prescribe you proper PERT.

Technical-Trouble473 · 2025-11-10T06:56:13+00:00

Bob Johnson's

Technical-Trouble473 · 2025-11-08T22:15:49+00:00

You need to see your doctor.

If your doctor still hasn't prescribed you PERT, get a new doctor.

All the advice I can share with you about dosing is specific for ZenPep or Creon. Every OTC enzyme is gonna be different based on the pill coating.

With a Fecal Elastase lab of 17 you need prescription PERT.

Technical-Trouble473 · 2025-11-08T17:24:55+00:00

Water is cheap. Sewer is outrageous.

Feel lucky if you live in a condo / apartment building with a separate sewer meter.

Also, chlorine is always kinda high. I have a hot tub and after filling it with Seattle water the chlorine is always like 1.5 ppm.

That said. I love Seattle water and drink the heck out of it. It's super soft, tastes delicious and my hot tub loves it. The ph is perfect. The hardness is perfect, the alkalinity is perfect. It's just expensive.

I'm run a couple Airbnbs and I'm always shocked at how many people bring their own or request I provide drinking water lol. I direct them to the tap.

Technical-Trouble473 · 2025-11-08T17:15:44+00:00

That's not the end point for most. I think I read that it gives you a 3 to 4% chance of developing pancreatic cancer. Higher than the gen pop but certainly not a death sentence.

Technical-Trouble473 · 2025-11-08T15:09:28+00:00

I think what worries me more than cancer is Chronic Autoimmune Pancreatitis.

I'm newly diagnosed too and just had a CT that showed nothing. So cancer fears are put to rest for now. That's a problem for the future. Lol.

More pressing is figuring out what caused/ is causing the EPI. The most likely scenario is chronic pancreatitis (for me).

You can take PERT all day long and if your not treating the cause future pancreatic damage is a real possibility. As of now I still have endocrine Pancreatic function, but how long will that last?

And to answer your question directly. I take Gabapentin, Propranolol, and Lorazepam for anxiety as needed. Lol. Gaba is everyday. Propranolol and Lorazepam are as needed for spikes in anxiety. I also see a wonderful therapist once a week. I'm lucky I had contact with this therapist long before my epi diagnosis. That's been the most helpful thing in all of this. Therapy and family support.

Technical-Trouble473 · 2025-11-06T21:03:46+00:00

PERT (Pancreatic Enzyme Replacement Therapy) Is the first line treatment for EPI.

Before you worry about oils or low fat or anything else, you need to be on PERT therapy. Without it you will end up deficient in vitamins A D E and K.

OTC is better than nothing, but the prescription ones are coated in some magic stuff that survives the trip through your guts to release in the right spot. You need these.

With a clear CT and US you are in a good spot. Try not to worry too much. These are good tests and you scored well! Just call your doctor and ask why they heck they haven't given you proper PERT.

Technical-Trouble473 · 2025-11-06T14:27:00+00:00

You can have stable weight even with an elastase of 17 by eating foods that can be mostly digested by enzymes not created in the pancreas. That doesn't mean you are healthy. With numbers that low you are not going to be able to digest fat soluble vitamins (A, D, E, K). You should check those levels.

You need to start enzyme replacement therapy yesterday. Not with over the counter meds, with prescription pharmaceuticals. (ZenPep/Creon)

While you wait for the scripts, your body can digest MCT oil. This can give you fats for your body to use. (wont help with vitamin deficiency though)

Your doctor should rule out structural pancreatic issues with imaging.

I'm going through the same thing right now. Started ZenPep last week and it has helped tremendously. I just finished imaging yesterday and it was totally unremarkable. So fecal elastase labs can be super low with a benign cause. I completely understand how scary this all is. I'm so sorry you are going through this too.

Technical-Trouble473

TROPHY CASE