What are other survivors doing about pancreatic enzymes replacement?

@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?

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.

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?

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.

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.

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.

My wife has been using RSO ever since she started chemo. Without it, she probably would have never eaten again. Using RSO is the only way she got off of Oxy. How does your husband take the RSO? My wife started by putting it onto a cookie or cracker but the smell and flavor were so off-putting that I have been making capsules. Unfortunately taking in a capsule makes the onset of the effect very delayed and hard to predict.

If you live in a state where marijuana is legal, you might try Rick Simpson Oil for the pain. Before we started treatment, my hubby had terrible stomach pain when eating/digesting. He took a rice sized grain on thanksgiving and got immediate relief, better than any pain med. You might ask the doctor about it.

Its been three months since we started working with a cancer nutritionist (all telemedicine visits). She listens well and has been able to provide some needed emotional support as well as suggestions for how to add calories, protein and some variety to my wife's diet. We still get the occasional encouragement to add commercial supplements. My wife is very hesitant because most of them are heavy on chemical ingredients that she wouldn't have eaten even when she was healthy. Just this week we added homemade smoothies with organic vegan protein, fruit, milk and peanut butter. Taking it slow before trying to also add organic whey protein. She's very discouraged because the chronic diarrhea has kept her from gaining weight. The immodium has seemed to lose effectiveness and she was prescribed cholestyramine last month to help the diarrhea. It settles her stomach a bit but hasn't stopped the diarrhea.

Starting to think that her surgery was too drastic and this is her permanent situation. Has anyone ever gotten past the chronic diarrhea stage?

There is a coupon through the creon website that gives a month for $5 instead of our copay of $90. I don't know how long they will offer it though.