Return of exocrine function?

So far, I have not had any recovery of exocrine function (-almost 2 1/2 years since Whipple surgery). However I am taking much more Creon than you currently are, and generally have good results. I was advised to slowly increase dose until symptoms are alleviated. I was told we require 300-1800 units per gram of fat eaten, or 500-2500 units per kilogram of body weight. Insufficient Creon will result in bloating, gas, diarrhea. Sufficient should result in normal stools. I am usually taking 7 x 25000 unit capsules per meal. There is a newer app available to help with calculation of how much creon to take - it may help you (I am not very into tech so still do most things old school) it is called “digest this” through Craig’s Cause, pancreatic cancer society. Hope this helps. Best wishes.

Register for app at digestthis.ca

Thank you for the information. I realize I did check out this app when it was recommended before, but found it unhelpful since the food I'm eating is not typical of the standard American diet.
My menu is boringly repetitive & lacking in fresh fruits & veggies (many eliminated from my pre-FPI situation through years of experience with keeping my I B S under control).
Fat sources are (1) some imported Irish butter, generally applied lightly on sourdough half English muffins chosen for their low glycemic index; and (2) a very high quality California Olive Ranch Olive Oil (the California Olive Oil industry is very highly regulated so that you can be confident of the contents in each bottle)
Protein sources are organic chunk white chicken meat & pole-caught wild tuna. I have not quite managed to overcome my general aversion to fish in order to have salmon occasionally.
Vitamins - minerals - liquid: from Amy's organic vegetarian vegetable soup (Green beans, peas, sweet corn kernels, small chunks of carrots, small amounts of celery and spinach)
I also have at least one serving since it's my favorite of a frozen organic vegetable medley (same veggies as in the Amy's soup except no celery or spinach) with some of the organic canned chicken or pole-caught tuna.

Just started Creon yesterday and hoping for positive results.

Your posts and comments are so helpful after diagnosis of EPI.

I started on Creon about five years ago and was taking one 24,000 capsule per meal and one with snacks. I no longer need Creon for breakfast and lunch meals and recently had a plate of fried Calamari without any Creon. I waited two days and no GI symptoms. I now seem to have enough pancreatic enzymes from the remaining body and tail of the pancreas. Next test will be to go without Creon for a number of days, add more fat and observe for GI symptoms and/or weight loss.

As for your situation of not getting expected results after 6 months, three possibilities come to mind. All the pancrealipase products need to be optimized. When the prescriber suggests taking a specific number for meals and snacks, that is a general “ball park” figure based on average eating habits. Each patient will be different because of meal size and fat content. There is an on-line dosing calculator at https://digestthis.ca. It makes it easier to calculate the number of capsules required per meal type.

If after optimization the desired effects from Creon are not achieved, the issue can be with that particular pancrealipase not being the most suitable product. Of the other Rx brands, there is also Zenpep, Viokace, Pertzye and Pancreaze. Each brand goes through different manufacturing steps in its processing (extraction, concentration, purification and enteric coatings) and this affects how each product acts within an individual. Both manufacturers and dietitians suggest trying a different brand if optimization does not resolve performance. The package inserts state pancrealipase brands are not interchangeable which means each one has to be optimized to the patient.

The third possibility is an additional co-morbidity. It is not uncommon for lactose intolerance or gluten sensitivity (celiac disease) to be an underlying cause of the symptoms. This is easy to check by eliminating both dairy and gluten containing products and introduce one type back into the diet. For example, if dairy is introduced first and symptoms restart, lactaid containing dairy products will address the lactase deficiency. If there is no difference with both gluten and lactose eliminated and the pancrealipase brand was changed, then a consult with a GI specialist can do a diagnostic work-up looking to see if another GI pathology exists such as ulcerative colitis, IBD/IBS, Crohn’s disease, small intestinal bacterial overload and others.

Thank you all for your comments. I’ve been on creon 3600 for two weeks and after following the recommended diet, I am noticing some improvement. I’ve stopped losing weight, and I am hoping to put a few pounds back on. I’m gradually adding more vegetables and fruits. Today, being Thanksgiving will be challenging. I have to admit, this has been a very scary experience but I am more hopeful as each day passes. Your comments have been insightful and helpful. Thanks so much!

Hi @mousie, it sounds like you are making good progress. How did you do over Thanksgiving? How are you today?