What are other survivors doing about pancreatic enzymes replacement?

I do use capsules but there is a delay. Rolling it in bread works too. It is like tar if you get it on your teeth. The dossage for cancer is a gram per day. We could only do a couple rice grains or he gets to feeling high. Nothing touched his pain till this, cbd makes it work better. The company I am working with will make a high potency version for cancer.

I have chronic pancreatitis from alcohol abuse. I started using pure encapsulations 4 years ago, and able to eat almost everything. One capsule before any meal or snack and one capsule after. In my last episode I lost 40 pounds, with this I have gained 15 pounds in three weeks. The amount of lipase, protease and amylase are much higher than Creon and much less expensive. I use pancreatic enzymes formula. Hope it help you.

Try pancreatic enzymes from pure encapsulations. You can get it from Amazon. One capsule before and after each meal and snack. You will notice the difference. The enzymes works.

My wife is 9 months post surgery and using Creon, cholestyramine, and immodium and still has persistent diarrhea. Her fecal tests and scans have been negative for mets and structural issues. Recent discussion with the gastro's nurse practitioner are leading to another test, SIBO for bacterial overgrowth. Even though the fecal bacterial tests have all been negative, they don't reveal possible bacteria in the small intestine. While the test itself is non-invasive, it does require pre-fasting and due to travel and the test taking as much as 4-5 hours, she'll miss multiple meals. The oncologist has suggested skipping the test and going straight to the antibiotics that would be prescribed if the SIBO test was positive. I'm leaning to the test, my wife is leaning to just go for the prescription although with great reservations.

Has anyone who experienced the ongoing diarrhea taken the SIBO/antibiotics route and did it help?

I was prescribed Vital Nutrients pancreatic enzymes by the naturopathic doctor when I was first diagnosed. The formula is almost identical to Creon and very affordable. I purchase Vital Nutrients on Amazon.However, I was still struggling with digestive issues so my oncologist recommended using the Creon because it is FDA approved. Because of the cost of Creon, I have, at times, supplemented with the vital nutrients. Because I don’t feel like either enzyme is very effective for diarrhea, I’m not concerned about using both.

@beachdog, such a crossroads. It sounds like both your wife and her oncologist are concerned about the toll pre-test fasting along with the travel and testing time will take an undue toll on your wife. Is the oncologist concerned about her weight and nutrient loss due to diarrhea? What is your main concern of her going straight to antibiotics in this case?

From the reading that my wife and I have done, the SIBO testing determines the proper course of anti-biotics. If they get hydrogen vs methane readings there are different anti-biotics for each outcome. If going straight to drugs, it's 50/50 that the chosen drug is correct. We prefer knowing in advance that we're treating appropriately (also it would be great to know in advance if we're on the right track). It's entirely possible that the diarrhea isn't from SIBO and a month of drugs unnecessarily could just put us another 30 days behind in finding the right solution and of course, mega doses of anti-biotics have there own side effects.

It's been a battle to get her enough nutrition. She's gained only 4 pounds in 8 months and gets more calories per day than me. When she misses even a snack she'll be down 1/2 pound the next day.

We actually hope that it is SIBO because the test is non-intrusive. Everything else that the gastro has suggested involves anesthesia and endoscopy which would probably knock off her feeding schedule for an entire day.

Back on the thread topic, enzyme replacement...

Since starting the new year and new co-pay year, we took a look at the Creon co-pay savings card. The first refill of qty 90 x 36000 units would have been over $900 but with the card, it was $5. Yes, $5 and the pharmacist said it was good for all the refills this year. My wife has private insurance which doesn't get a discount on Creon but once we hit the out of pocket maximum, even the co-pay stops. Not sure how well this will work with Medicare Part D plans.

Worth a look https://www.creon.com/on-course

My wife is still taking Creon and has actually upped the full meal dose to 3 x 36000 caps three times a day. The latest three month refill had a note from the pharmacy, that our insurance saved us $11,900 ! We reach her out of pocket maximum pretty quickly but the pharmacy that the insurance company partners with is ripping off patients. Since the insurance company determined that Creon is a maintenance drug she has to use their in-house mail order or a mega-chain store instead of the local pharmacy that knows her and actually charges less even for cash customers.

I was told my pancreas not making enzymes. doctor ordered the very expense enzymes and I know nothing else