Hi, @rjbusher. Welcome to Mayo Clinic Connect. Having pain from your medications and then pain issues with other enzymes , all while you are trying to manage your condition, sounds not pleasant at all.
I'm going to tag a few Mayo Clinic Connect members who have mentioned issues with enzymes, such as @crickard70 @gardenlady1116 @stageivsurvivor @riva. I'm also inviting @researchmaven and @becsbuddy to chime in if they are familiar with people who cannot take pancreatic enzymes and any doctors they might suggest who are familiar, as well.
Just so you are aware, rjbusher, some of these members I've tagged have gained experience and knowledge of some of these things through experiences with cancer. Please know I'm not in the least diagnosing you, but just trying to bring members to you who might have some responses to your results with pancrelipase (Creon) or other enzymes.
What are you taking for your pancreatic insufficiency right now, rjbusher? Did your primary care or GI doctor provide any alternatives for you?
I'm not taking anything now. I'm eating a very regimented diet. I'm eating vegetables, fruits, whole grains, beans and peas, white chicken meat and some fish, trying to be low in fat and low in sugar. In a diet like that it is difficult sometimes to get the protein and calories you need in a day, but I count everything and get what I would need providing I am properly digesting it, which I am not. I am finding it very difficult to keep my weight. I want to be able to take enzymes again. They make a huge difference, but the longer I try each time to worse the pain becomes. The staff at my GI physician hasn't provided alternatives and the only advice they have offered is that enzymes don't cause problems like I am experiencing.