Pancreatic insufficiency ..No cause?

@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.

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.

@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.

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.

@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.

I was diagnosed with EPI two years ago and take Zenpep. I recently had a flare up likely due to not taking meds at start of meal or forgetting. I was sick for two days with abdominal cramping and gas and very fatigued. My Dr said I need to be more regular with my meds especially with high fat or high fiber meals. Has anyone else had flare ups due to medicine mismanagement?

I can say I only have forgotten at maybe one or 2 meals in the past year. Being T1D I Must take the pills to get my glucose up… otherwise I get dangerous hypoglycemia.- low glucose. As for how it effects your bowl movements… yes loose would happen if pills forgotten. But likely return to normal after a day or so. What’s your elastase test number? Your E-test and body weight determine your correct dosage. There is a formula the drug companies use for Max. Safe dosage. I have posted this elsewhere.

This is all fascinating. I began having episodes of explosive diarrhea, as many as 20 times per day, in 2017. I was 57 at the time. Finally, in 2024, I was diagnosed with EPI. Absolutely no underlying cause identified. My doctor prescribed Creon, but it was $2000 per month with my insurance. I take Zen Pep, which my insurance pays for 100%. I was taking 8 25,000 pills per day and doing okay, until it just stopped working. Starting about 2 months ago, every single thing I eat would go right through me. My doctor thought I might have cyclaspora. I did a stool test. No parasite but, my elastane is 24. Frankly, that’s the lowest number I’ve seen on here. My doctor tells me my pancreas is essentially not functioning. I keep upping my meds on my own, as my doctor is out of town for a month. I am up to taking 16 25,000 pills per day. The diarrhea has slowed, but not stopped. My husband is convinced I have been misdiagnosed. The one thing I can tell from reading this, is that every single person has a different reaction, different symptoms, etc. As you all know, it is incredibly frustrating. There is some comfort in knowing I am not alone. If anyone knows a medical group on top of this, I missed it. Please repost. Thank you!

I also have EPI. In the beginning, I was prescribed one Creon 36000-unit capsule with each meal and snack, or five capsules a day. This dose didn't help at all; therefore, my gastroenterologist increased my prescription. After four months, I was up to three Creon 36000-unit capsules with each meal and two for snacks, for a total of 13 per day. My prescription sayes maximum 13 day. I am doing much better but still have diarrhea sometimes. The other problem I have is that I can have almost a regular bowel movement and two or three minutes later I have a bowel movement that is diarrhea. And then again after two or three minutes, I have another diarrhea episode, and sometimes a third episode within minutes. Has anyone else had or have this problem? If so, have you been able to keep this from happening? Any suggestions would be appreciated.

@fred41 Welcome to Mayo Clinic Connect! EPI seems to have everyone on a different plan. Different types of supplements, different dosages. I haven’t paid very much attention to taking my pills when I should and even forgetting them frequently. But, I had a real wake-up call last week with abdominal pain and diarrhea in the middle of the night. It was awful. Lucky for me, I have the kindest husband in the world. He helped me and even put the laundry in the wash for me. Now he reminds me to take my Creon everywhere we go! Unfortunately, it will take your body some time to catch on to what you are trying to do. Try to keep a record of # of BM’s and type each day, #of Creon with each meal, and if you have fatty meals. Then make an appointment with your doctor to discuss what’s happening with you and maybe you can come up with a new plan.