What are other survivors doing about pancreatic enzymes replacement?

We are just starting Creon and it is a hard one to figure out. My husband is a month and half since his surgery. They couldnt do a Whipple so they left the tumor and did introperative radiation. Since then his digestive issues have worsened so we are wondering if pancreatic insufficiency is at least part of the problem. In addition to the cost, the amount of Creon needed can be individual..so far my husband is not getting much benefit and still has to take opiates and maijuana for relief from stomach pain.. Does anyone have any experience with other forms of PERT??

There aren't a lot of options for pancreatic enzyme products. There's Creon and Zenpep which is similar and also costly. Our nutritionist mentioned this product but we haven't tried it. https://www.vitalnutrients.net/pancreatic-enzymes.html

My wife has been using Creon for 2 years and her insurance has thankfully covered it so far. Try to get prescriptions for 12000, 24000 and 36000 doses. The insurance company won't like it but my wife had to experiment a lot and found that too much Creon was almost worse than too little (gas, bloating). She uses 12000 or 24000 for small snacks based on how fatty they are and 3 x 36000 for full meals.

Good luck.

I stumbled across this thread while researching options for obtaining Creon more affordably while my dad is in the Medicare donut hole. Dad also had the Whipple surgery 2 years ago for stage 2b pancreatic cancer. Creon helps the diarrhea but does not eliminate it. Very gradually over a year or so, he was able to get back to a more desirable weight and is back to his active lifestyle despite needing to stay close to a bathroom due to diarrhea one to two times a day. The Ensure and other protein drinks recommended to increase his protein intake made the diarrhea worse and upset his stomach so he stopped that …probably developed a bit of lactose intolerance. Dad recently tried cutting back on the Creon due to the cost, but his GI symptoms became intolerable. His doctor is working with him to try to get some financial help from Abbvee. Don’t know when or if we will hear back from them. This is a huge issue for so many people and I wish I knew of a way to work toward a solution for everyone who needs this medication!

Congrats on your continued good health! I’m always a bit leery of trying otc formulations not recommended by a doctor. The Pure Encapsulations Pancreatic Digestive Enzymes are not tested by the FDA or other regulatory bodies so I am a bit skeptical. I would also be interested in hearing if anyone is using them and if their doctor had recommended them.

if you can contact me I may be able to help. My wife passed away July 9th and was on Creon for 7 years. It was very helpful to her

I was taking something which eludes me at the moment but my doctor changed it to Creon. I take 3 capsules 3 times a day before meals. I had the tail of my pancreas removed which is where digestive enzymes are produced. I would ask the doctor about any OTC drugs to be sure. Hope your father stays healthy and active.

Zenpep is the one I was on. Then my doctor changed it. I'm not really sure why because they have the same ingredients. Maybe they got a better deal on it from the pharma.

I use OTC digestive enzymes from the natural food store. Actually these have a higher concentra

Higher concentration of the enzymes. Much less $$ than Creon and ZenPep

My condolences to you on the loss of your wife