Pancreatic Cancer Support Group

I would like very much to join the pancreatic cancer group. Do I need a password to get in? I already have zoom on my computer.

What time zone?

What should I know about gallstones & treatment/tools/measures/foods that would naturally get rid of them? Thank you!

I am new in this group and I am having horrible issues with Ceron enzymes after my Whipple surgery anyone else?

I missed the support group zoom session yesterday due to extreme throat pain after my radiation treatments. My oncologist called me into the office to look at me and help me with that. She did help. I am back on steroids to help with the inflammation.
I sincerely hope that those who attended were blessed and encouraged by the experiences of other patients. May God bless you all.

I attended a Peer Support session last Saturday on Diet post Whipple. We were talking about Creon, and the challenges people face, getting the enzyme adjustment 'just right'. How long ago was your Whipple? Have you seen a dietitian? My husband ended up taking 10 creon per day, and that seemed to suit him pretty good. What are your issues, specifically? Cramping, diarrhea, bloating, constipation?

Bile acids work by thinning bile, allowing it to flow more readily. The Rx version is Ursodiol and there is a natural health store product called Tudca that is readily available on Amazon. It's worth a try. After my husband's Whipple, he had an issue with bile duct strictures at the anamstosis. His bile was normally kind of sludge-like. Ursodiol helped, but he ended up having a PTC (Percutaneous Transhepatic Cholangiogram) and dilation.

I lived in Virginia, that's Eastern time zone/ further west you'll be in centeral time zone/ then in the southwest it's Mountain time zone/ Then further west it's Pacific time zone. I hope this was what you were asking about.. Kfinlayson
Ken

Thanks, I was asking what time zone the zoom meeting time was in, so I could schedule it for my time zone. Missed January call. Maybe Feb?

Using pancrealipase like Creon requires the patient to optimize the initial prescribed dose which is calculated on one’s body weight. It assumes one is following dietary guidelines for how one should eat following a Whipple which is no-fat, low-fat, small portions more frequently during the course of the day. As part of my dose being determined, I took the time to describe to my prescriber my eating habits and diet. So when Creon was prescribed, I had a little tweaking to do when I ate something I normally don’t eat or consumed a larger portion.

To make the process easier, I started out following the suggestion of small meals that were low-fat and non-fat. I kept a daily food journal noting date/time, type of meal, contents, quantity and amount of fat. It takes between 24-40 hours from ingesting food to be digested and excreted. So I then noted GI tract symptoms and stool characteristics. If it caused cramps, loose stool, floating stool or diarrhea, I looked back 24-40 hours to see what I injested. If Imate the same meal and same results, it was likely what the cause was and I noted and eliminated the offending item.

Vegetables are difficult to digest even with a normally functioning GI tract. Some vegetables have complex wall. Cabbage, Brussels sprouts and corn are very hard to break down and they cause excessive gas that can lead to painful cramps. The enzyme needed to break down vegetables is alpha-galctosidase and humans do not produce it nor is it contained in pancrealipase. Amylase will break down the simpler carbohydrates in plants but it requires alpha-galactosidase for complete digestion. The OTC product BEANO contains alpha-galactosidase and when taken as directed, will reduce gas and allow nutrients and vitamins in the vegetables to be absorbed. Early in my optimizing of food, I avoided the more difficult vegetables. Refer to the following link-

I slowly introduced new items or increased the quantity and again observed the effect. Within a few weeks I had a working diet that was symptom free. When additional Creon was required, it needs to be taken staggered. Do not take them all at once. The objective is to have a consistent level of enzyme available to work on its target substrate (food containing carbohydrates, fats and proteins). Take the first capsule either immediate before the first bite of food or immediately after the first bite of food…does not matter as long as it is not taken well before eating the meal. Enzymes have a limited period of effectiveness and get activated when the capsule reaches the alkaline environment of the small intestine and the coatings on the enzymes dissolve. Enzymes last about 45 minutes so taking it before the real is using them up sooner and less are available to aid the digestive process.

The only thing common to all the Rx pancrealipase brands is they are derived from porcine pancreas. They way they are extracted from the pancreas, processed, purified, concentrated, coated and the binders and fillers used vary. These differences account for how the different brands perform in the same individual as well as how the same brand performs amongst a group of patients. If after optimizing (increasing/adjusting the quantity of capsules based on specific meals) the desired performance is not achieved, speak with the dietitian about evaluating another brand.This usually remedies the issue of performance.

If one continues to suffer from loose stool or diarrhea, there can be another con-morbidity occurring at the same time. Common ones are lactose intolerance and gluten sensitivity (celiac disease. These are east to determine by eliminating daily and gluten products and then introducing one back first and noting the effect. If ok, then just do gluten products and observe the result. It is not uncommon for a patient to exhibit one of these condition after the Whipple procedure.

Other pathologies will require a diagnostics work-up by a GI specialist. Pathologies that can cause GI issues that pancrealipase will not ameliorate are Crohn’s disease, ulcerative colitis, IBD/IBS, Small Intestine Bacterial Overgrowth (SIBO) and a Clostridium difficile (C. diff) infection. A GI specialist can check for these to rule out.

Pancreatic Enzymes
https://letswinpc.org/managing-pancreatic-cancer/2019/10/09/pancreatic-enzymes-explained/

DIET AND NUTRITION
http://media.pancan.org/pdf/patient-services/booklets/Diet-Nutrition-Booklet-Digital.pdf

HOW TO EAT AFTER WHIPPLE SURGERY

CELIAC DISEASE

LACTOSE INTOLERANCE