Pancreatic insufficiency ..No cause?

Posted by hopethereisnothing @hopethereisnothing, May 16, 2023

I wonder if anyone has been diagnosed with pancreatic insufficiency, withput having pancreatitis or any other organic pancreatic disease ..does it happen ?

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Profile picture for diamondback2k9 @diamondback2k9

The 800 score was when I was on Creon. My Dr said that was just Creon doing it job. I'm still so scared of pancreas issues. Working on getting a second option but I'm not sure how to do that. My back pain is a burning sensation that moves around. I have had so many test including colonoscopy endoscopy and CT scans and blood work but everything comes back as normal but the extreme tiredness comes and goes. I'm still fighting and trying but it's taxing as I'm not sure what fight I should be fighting.

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@diamondback2k9 back pain could be sciatica. I ended up doing spinal decompression at a chiropractor and regular back adjustments. No meds. Mine was a very painful pain and ended up in the ER but modern medicine only provided muscle relaxants and some pain meds which doesn't do much except only mask the problem.

See your doctor for a check up. If they say sciatica find someone that does spinal decompression.

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I was diagnosed with EPI back in late August 2024 and started on Creon on Sep 5. Apparently, I too have no known reason. A CT scan at the hospital showed the pancreas was normal size, no lesions or any other signs of problems. Colonoscopy was clear in June. EPI stool test confirmed.

However, I highly suspect both my mother and father had it but were never diagnosed before they passed away some time ago. The symptoms they had back then kind of mimic the same problems I've had for the last 30 years. Unusual weight gain and gradual changes in stool until, for me, in Feb 2025 onslaught of explosive diarrhea which eventually turned into complete undigested food coming out in August.

Since Feb 2025 I have lost over 35lbs and continue to lose a pound about every 2-3 days which I still have around 90lbs to get back to a good weight for me.

My PCP had to change my blood pressure meds in December as my bp dropped a lot down to 101/67 and my fitbit heart rate measurements down from high 90s to 50s.

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Profile picture for lueverson @lueverson

@vuk Hi. Do you still experience pain when you eat? I'm currently on ZenPep, but I still have pain, and am looking for something besides bed/heating pads...

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@lueverson

from https://www.creoninfo.com/faq

What is the most important information I should know about CREON?
CREON may increase your chance of having a rare bowel disorder called fibrosing colonopathy. The risk of having this condition may be reduced by following the dosing instructions that your healthcare professional (HCP) gave you. Call your HCP right away if you have any unusual or severe: stomach area (abdominal) pain, bloating, trouble passing stool, nausea, vomiting, or diarrhea.

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50 years T1D recently EPI diagnosed after a bowl obstruction. Standard tests showed approx. “65” on enzymes for carbs and protein but fat enzyme test = normal. Normal fat enzymes means my poop is never loose. Made diagnosis difficult. Being T1D it is crucial Zenpep or Creon cannot be compromised by exposure to heat. Otherwise hypoglycemia is the result. Due to the quantity of required pills per meal to match my insulin , Can Only be acquired by mail order pharmacy& must be shipped to me . In summer I often receive pills less than full strength. And always order “express shipping”. I must eat 4 meals a day. To keep me healthy to get proper nutrients. But also requires me to take vitamins. I have learned this fact, that most breakfast cereals and non-dairy milks contain calcium carbonate which lessens the efficiency of your ENZYME pills. This is fact. Please Read your cereal box and fake milk.

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Profile picture for venture @venture

50 years T1D recently EPI diagnosed after a bowl obstruction. Standard tests showed approx. “65” on enzymes for carbs and protein but fat enzyme test = normal. Normal fat enzymes means my poop is never loose. Made diagnosis difficult. Being T1D it is crucial Zenpep or Creon cannot be compromised by exposure to heat. Otherwise hypoglycemia is the result. Due to the quantity of required pills per meal to match my insulin , Can Only be acquired by mail order pharmacy& must be shipped to me . In summer I often receive pills less than full strength. And always order “express shipping”. I must eat 4 meals a day. To keep me healthy to get proper nutrients. But also requires me to take vitamins. I have learned this fact, that most breakfast cereals and non-dairy milks contain calcium carbonate which lessens the efficiency of your ENZYME pills. This is fact. Please Read your cereal box and fake milk.

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@venture
Forgot to mention, I have had CTs and MRIs done for pancreas. Mine is smaller than normal= common with T1D. And I do have a 1” spot that must be checked yearly, because it’s not at a spot where an easy biopsy can be done, they tried and failed. But they say it’s not causing the EPI. Research EPI, doctors often just prescribe enzymes but typically not enough. You need the enzymes to extract nutrients from food. 1 year after diagnosed my sight turned foggy. I figured out I was low on “A”. Vitamin A is needed for clear lens of the eye. LOW Vitamin A is typical for EPI. Vitamins have restored my sight to 20/20. The enzymes you take are significantly less than typical amount from a healthy pancreas. If on the severe scale, don’t believe the enzymes are all you need.

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