New to exocrine pancreatic insufficiency (EPI): What helps?

Thank you for posting this information. I will try especially staggering during a meal.

After I was prescribed Creon at a starting dose of 24,000 lipase units, I optimized the amount I needed for a specific meal by keeping a daily food journal. The starting dose was calculated using the formula provided by the manufacturer which is based on the patient following the recommended diet predominantly non-fat and low fat. Although the dosing calculator Abbvie has saying for my body mass (120-130 lbs), I should take one 36,000 capsule, the 24,000 capsule has been satisfactory for most meals as I stick to non-fat and low fat fairly consistently.

By keeping a daily food journal noting day/time, type of meal, quantity and fat content and then noting the GI symptoms and stool characteristics 24-40 hours later (the time it takes for food to be digested and excreted by an adult), I quickly identified what meals (fat content, portion size) required more pancrealipase. It did take long to optimize as I kept to a consistent diet the first month. Slowly I began increasing the quantity of type of foods which included some additional fat. Already having a good idea of what was working, it became easy to extrapolate when to add more pancrealipase capsules to keep the GI tract functioning normally.

An oily sheen and stickiness of the stool is likely caused by undigested fats indicating more enzyme is likely required. When taking capsules, I take my first capsule immediately Before or after the first bite and then stagger taking additional capsules throughout the meal. This keeps a consistent level of enzymes in the intestine available to digest the target substrate (carbohydrates, fats, proteins). By staggering, it more closely resembles how a fully-functioning pancreas works which produces and secretes enzymes in response to food entering the intestine and sending a signal to the pancreas by way of releasing a hormone that binds to receptors in the pancreas that more enzymes are needed.

If optimizing by increasing the number of capsules to the maximum suggested by the dietitian is not achieved, the manufacturers and dietitians suggest trying a different Rx brand. Although all the Rx brands are derived from porcine pancreas, they differ in performance within and between individuals as a result of how the enzymes are extracted, processed, purified, concentrated, the time-release coating used and binders and fillers added. For these reasons, one should evaluate different brands if the first one does not perform optimally. I also stick to recommendations of PanCan.org and dietitians of avoiding fats, red meat in moderation and the vegetables that are hard to digest.
https://letswinpc.org/managing-pancreatic-cancer/2019/10/09/pancreatic-enzymes-explained/
https://flatulencecures.com/vegetables-that-cause-gas/
http://media.pancan.org/pdf/patient-services/booklets/Diet-Nutrition-Booklet-Digital.pdf

I was taking over the counter pancreatic enzymes made from porcine but they stopped working so i asked for a prescription. The prescription is for Zenpep and a very low dosage compared to my over the counter. The prescription has been tripled but im still having problems. I just requested another increase in strength. The difference now is that the diarrhea happens after I eat and might only last a day or two and then I have one to 3 days without diarrhea before the process repeats. Stool is consistent with EPI description (sticking to toilet, greasy).

Are you taking a pancrealipase like Creon, Zenpep, Pancreaze or others for the EPI? If so, are you finding it has helped in normalizing your GI tract functioning or are you having issues with diarrhea and characteristics of the stool that are associated with EPI?

Thank you. That’s what I thought. I asked my gastroenterologist if we should test for celiac since I’m having a colonoscopy in January but she said she doesn’t go into the small intestine but she ordered two blood tests instead. I read and told my doctor that I read that if a person has been avoiding gluten then the test won’t be accurate. She ignored my comment and I did the blood test anyway.

I have slowly enlarging small BD-IPMN with double ducts dilated and enlarging. Now I have EPI and for the last 3 years pain/discomfort in upper right quadrant and my liver enzymes are fluctuating between high and normal. I also had Uterine sarcoma cancer stage IV in 2006. Knowing all the above is making me feel that I could possibly have cancer but I wanted to check whatever other possibilities could be causing some of these things. I guess celiac probably isn’t very likely in my case.

The definitive gold standard test for diagnosing celiac disease (gluten intolerance) is a biopsy of the intestine.
https://celiac.org/about-celiac-disease/screening-and-diagnosis/diagnosis/

Hi, do you mind my asking how did they determine that you have celiac disease? What tests were done? Thanks

Hi, im not sure what group i should be on but ill explain what is going on and hopefully someone can give me some ideas or direction. I have IPMNs (a type of pre cancerous cyst) in the body of my pancreas. It’s 1.4 cm within pancreatic body. My main pancreatic duct is dilated up to 6mm. My common hepatic duct is dilated to 15mm. My gastroenterologist repeats yearly MRIs pancreas type. I had my gallbladder removed in 2017 and the surgeon cut my bile duct in the process. I was in hospital 2 weeks before they transferred me to a higher care facility and then i was in that hospital another two weeks. A stent was placed in the damaged duct and later removed. The IPMN was discovered during one of the MRIs. After being released from hospital i had periodic bouts of pancreatitis pain lasting about 30 to 45 minutes once every 2 or 3 months and then gradually subsiding and my liver enzymes fluctuating. In 2022 the pancreatitis attacks ended and i just had occasional discomfort in upper right quadrant. Since my doctor didnt seem concerned about the IPMN gradually enlarging from .9mm in 2017 to 1.4 cm today or about the main pancreatic duct going from 5mm to 6mm or the common bile duct increasing from 9mm to 15mm , I went to a functional medicine doctor who ran a stool sample test with results showing extremely low elastace (I was having bouts of diarrhea beginning in 2021 but my gastroenterologist simply told me to take fiber which did nothing for me). On my own i read that extremely low elastace (mine was 48) at 100 or less definitely means i have EPI. I bought some pancreatic enzymes over the counter and they helped for a while. When they no longer seemed to be helping i contacted my gastroenterologist again and explained what had been going on with Elastace and the enzymes etc. I asked her for a prescription for pancreatic enzymes thinking a prescription might work better. She prescribed too low of a dose and now 3 months later i am on triple the dose. So far it might be working but i need to give it a couple days. Anyway, i had my yearly MRI a couple weeks ago and now my gastroenterologist is suggesting i have an EUS “to see what might be causing the diarrhea”. Last year my gastroenterologist agreed to do an EUS with fine needle aspiration (I had a video call with her and expressed my concern over what i read about the “double duct” (dilated ducts) with IPMNs and being symptomatic and the diarrhea, fluctuating liver enzymes on blood results and thats when she said she would do the fine needle aspiration. She did do an EUS but she did not do a FNA because she said she didnt see anything concerning while she was looking around. She was also 3 hours behind schedule that day. I feel like now after all this time she is finally maybe getting a bit concerned but I have to wonder if I should be looking for another doctor instead and why would i do another EUS with her when i just did one last year. Im worried that my IPMN is cancerous and that has caused the EPI and I cant even talk to anyone about it until i wind up in the ER with my skin yellow. I had stage 4 Uterine Sarcoma cancer in 2006 and thats a type of cancer that can come back 20 years later. Well i suppose probably all cancers can come back 20 years later… In any case I am worried and have been worried about cancer ever since the botched gallbladder removal. If I do have pancreatic cancer, I dont think i want to go through such a serious operation. I worry about quality of life afterwards. I do want to know what’s happening though. If i was told that its cancer then i would like to hear a doctor out on the process. I might not go through with the surgery but I still want and need to know what’s wrong with me. I was just diagnosed with Psoriatic Arthritis and i feel so tired all the time. Sometimes i feel like its just not worth trying to get to the bottom of this when i cant even get my gastroenterologist to admit that my IPMN, double duct dilation, EPI and others symptoms are concerning. I forgot to add that my gastroenterologist prescribed Zenpep. She did not discuss diet or anything else just that i should take Zenpep right before i eat.

I was recently diagnosed with EPI and prescribed Creon this med has been wonderful for me. No side effects so far. I contacted the company and got help paying for this very expensive medicine.
I don’t know a lot about this disease but am trying to learn all I can with websites and help groups. Good luck on your search!

It takes about a week to get approved. Your doctor can give you samples to tide you over until you get from manufacturer