What are other survivors doing about pancreatic enzymes replacement?

@beachdog My doctors started me on Creon immediately after my Whipple. I have been on it for 6 years now. I asked my nurse practitioner at Mayo about switching to Pure Encapsulation or other over the counter enzymes. She checked with a pharmacist. I was told that I could try other enzymes but I should not use anything that is not USP certified. I was checking not because I could not tolerate Creon but because of the cost of Creon. I have had to adjust my dosage from time to time, but I have used nothing but Creon and it has worked for me.

@fassbinder EXACTLY! We still have been trying to get to a pancreatic or at least a digestive cancer specialist dietician because the advice we receive even from the pancan surgical team is the generic, "use the Creon, take ensure, take protein supplements ..." But what are you supposed to be doing when those things cause the vomiting and severe diarrhea?

In my wife's case, the chemo caused temporary changes in tastes that made food taste vile but it lasted only a few days. Something about the surgery, whether the loss of multiple organs or the side effects of the anesthesia, epidural and pain meds, made food so vile that she immediately spit it out or gagged it up. That lasted over a month. No one has acknowledged what else to do. Now 2 months later these reactions have subsided for well-prepared foods but continue for anything like ensure or other supplements. We're really seeking a detailed dietary meal plan that I can prepare for her that provides enough nutrition and variety.

@beachdog I know someone who uses this product. He uses it because of the cost of Creon.

@beachdog, @fassbinder, @marvinjsturing, and others. I know you have all been discussing supplements to help with diarrhea etc. While I have never had to personally use this product I have heard of it in a support group I've attended for folks with a rare form of gastric cancer. Members of this support group (for NET patients) say it is helpful post-surgery, during chemo treatments, etc. It is called, Enterade. Here is the website that gives you more information, https://enterade.com.

Did creon help you with the cost? We have gotten a coupon for 5/month. Don't know how long they will offer that. Haven't had surgery yet and pancreas is still working pretty well.

Patti, did you ask about any clinical trials? If you are on palliative care, some get relief from cbd and RSO (Rick Simpson Oil
or Charlottes web). You have the right to try. Blessings to you both.

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.

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?

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.

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.