People who aren't able to take pancreatic enzymes.

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?

Right-sided pain wrapping from the back to the front under the rib cage would make me wonder whether the pain is truly from the enzymes or whether it reflects an underlying biliary, liver, duodenal, or chronic pancreatitis issue that happens to become more noticeable around meals when the enzymes are taken. Do you have a gall bladder? Do you consume fats, fried food, dairy? Some patients can develop an allergy to pork products and pancrealipase if derived from porcine pancreas. Vital Nutrients produces a Vegan version of digestive enzymes with noting derived from porcine pancreas.

The location of symptoms is something a pancreatic specialist would likely want to evaluate. I would go for a consult at one of the NCI Centers of Excellence with a high-volume Hepatobiliary program such as Mayo Clinic, MD Anderson, Johns Hopkins or University of Pittsburgh Medical Center, These have the top Hepatobiliary programs in the US.

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.

I only experience the pain when I try to re-introduce the enzymes. I am not taking them now. I have tried to re-introduce them three times over the past 18 months or so, using three different brands. My gall bladder was removed almost 15 years ago. That is when the difficulties digesting food showed up. It took another eight years or so to get a diagnosis of pancreatic insufficiency, and when I took Creon there was an almost immediate improvement. It was a game-changer. I am very disciplined in my diet. I haven't had fried foods in a decade. I've removed dairy and sugar, and it caused a noticeable improvement in body pains, but not the ones associated with the enzymes. I do eat some pork because some pork tenderloin is 3 grams of fat per serving. I wondered about pork allergies. I've tried the Vital Nutrients and it looked promising at the beginning in that I experienced no pain until I ramped up to about one-half of what they recommended on the label. Below that I felt OK but I wasn't getting the effect I was hoping for in digestion. I'm at point where I think I need to turn to someone like Mayo Clinic or others for help, but I was hoping for some advice on some names of doctors who worked specifically in this area. Thanks for your comments.

@rjbusher It all sounds so awful for you! You said that you’ve contacted the GI doctors office but they didn’t have any suggestions. Have you asked for an appointment? It’s really important that the doctor hear your problems and then try to fix them. I think they have a duty to help you. Is there a university hospital or a comprehensive medical center within a reasonable distance? Doctors are usually a ‘cut above’ and they also get involved with research. I suggest that you try to get an appointment. My GI doctor also made himself scarce. When i called for an appointment, I was told that the doctors didn’t have ‘office hours’ and I would need to speak with the PA. I was able to get a nurse practitioner at the university med school.
Really makes me wonder how many GI doctors do this!

You may want to check Pancreaze…

@becsbuddy
My local GI doctors used to scope me and tell me I looked good. After losing 50 pounds and getting a little testy with one six or so years ago, he sent me out of town near a med school where I got my diagnosis on my first visit, which was an EUS. I go for EUS about once a year. I usually only talk to my doctor afterward when I'm not exactly sharp. Between visits, I usually meet once with a NP.

@venture
I have tried it, too. I have a history with Creon, ZenPep, Pancreaze and Vital Nutrients. I think I'm going to try Vital Nutrients once more and make sure I remove pork from my diet. One of the others mentioned that some people develop a problem with pork because the enzymes come from pigs. It's an easy thing to check. If I do better on it while avoiding pork, I'll get tested the next time I see my GP. Once I started thinking about pork, I realized I probably eat more of than I thought. I make a lot my own food, including bean soups and they generally include a small amount of pork for seasoning. I'll let you know how it goes. Thanks for writing.

@stageivsurvivor
Thanks for writing. After I read you comment. I decided to give Vital Nutrients another try. A problem with pork is an easy thing to check. If I do better on it while avoiding pork, I'll get tested the next time I see my GP. I realize that it probably is a very small percentage of people who develop problems with pork. But once I started thinking about what you, I realized I probably eat more of it than I thought. I make a lot my own foods, including bean soups, and they generally include a small amount of pork for seasoning. And like I said, I noticed an improvement in some body pains when I eliminated daily and sugar. I'll let you know how it goes. Thanks.