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jewill
@jewill

Posts: 8
Joined: Dec 07, 2016

Exocrine pancreatic insufficiency (EPI)

Posted by @jewill, Dec 6, 2016

I was dignosed with e p i. Exocrine pancreatic insuffency in 2015 after having a severe reaction to premarin estergen cream then 2 weeks later i had an even more sever reaction to an infusion of reclast it is a biphosphonates l am severly allergic to phosphates,dr did not check for that.i had diarrhea lost 20 lbs destroyed 90 % of my pancreas dr gave me creon 3600 2 with each meal low fat diet that is all the information i got from him did research on web for diet and supplments .need a dr in austin tx that knows more about e p i would apprecate any info on this thank you jewill

REPLY

Welcome to Connect @jewill, and thank you for sharing your history,

EPI can go undetected and be so frustrating, especially since it can occur due to both pancreatic and non pancreatic causes, and the symptoms are very similar to that of other GI disease.
After doing some research, I found a detailed journal article on EPI, here: http://bit.ly/2hgkNAo; and I’m tagging older members @rickzaner, @codelue, @inhiscare2, with the hope that they will join in the conversation, as they have some experience with the drug Creon.

Also, @mkenn, @saucy, @concernedmtnmom, since you have all discussed malabsorption, do you have any suggestions for jewill?

@jewill, do you take any vitamin supplements in addition to the Creon? Have you been diagnosed with any other conditions that could be linked to EPI?

I was diagnosed with endocrine pancreatic insufficiency EPI after having a reaction to estrogen cream and 2weeks later a reaction to reclast infusion a BISPHOSPHONATE.dr didn’t check my chart for allergy to phosphates nor tell me to have any invasive dental work done first .i had diarrhea for over 200 days lost from 130 to 103 lbs .my teeth have started to break off i have a lot of muscle loss i went from dr to dr none knew what i had finally a dr ran fecal test and started me on creon and told to go on a low fat diet.i did research diet ,timing for creon and food ,supplements,exercise.i put my food in blender to get more food in me it is hard to chew.i have done organic for 40 years .I would like to find a Dr in austin tx that knows more about EPI .supplements ,creon and organic food and keeping stress down works I still work but i am 78 so i wont be able to do that much longer. I would love to hear from any one with any informed on EPI or malabsorption.

@jewill

I was diagnosed with endocrine pancreatic insufficiency EPI after having a reaction to estrogen cream and 2weeks later a reaction to reclast infusion a BISPHOSPHONATE.dr didn’t check my chart for allergy to phosphates nor tell me to have any invasive dental work done first .i had diarrhea for over 200 days lost from 130 to 103 lbs .my teeth have started to break off i have a lot of muscle loss i went from dr to dr none knew what i had finally a dr ran fecal test and started me on creon and told to go on a low fat diet.i did research diet ,timing for creon and food ,supplements,exercise.i put my food in blender to get more food in me it is hard to chew.i have done organic for 40 years .I would like to find a Dr in austin tx that knows more about EPI .supplements ,creon and organic food and keeping stress down works I still work but i am 78 so i wont be able to do that much longer. I would love to hear from any one with any informed on EPI or malabsorption.

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Hi @jewill, I moved your message to the discussion in the Digestive Health group. Here is some information on EPI from the National Pancreas Foundation http://bit.ly/2hDubL5
I’m tagging @v1crew @opaqueandblue and @gman007 to see if they may have some suggestions about supplements and diet for you.

Jewill, Was chronic pancreatitis the cause of exocrine pancreatic insufficiency in your case?

@jewill

I was diagnosed with endocrine pancreatic insufficiency EPI after having a reaction to estrogen cream and 2weeks later a reaction to reclast infusion a BISPHOSPHONATE.dr didn’t check my chart for allergy to phosphates nor tell me to have any invasive dental work done first .i had diarrhea for over 200 days lost from 130 to 103 lbs .my teeth have started to break off i have a lot of muscle loss i went from dr to dr none knew what i had finally a dr ran fecal test and started me on creon and told to go on a low fat diet.i did research diet ,timing for creon and food ,supplements,exercise.i put my food in blender to get more food in me it is hard to chew.i have done organic for 40 years .I would like to find a Dr in austin tx that knows more about EPI .supplements ,creon and organic food and keeping stress down works I still work but i am 78 so i wont be able to do that much longer. I would love to hear from any one with any informed on EPI or malabsorption.

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Jewill, I am sorry for your problems and will offer what little I know about EPI and the resulting problems. I was dx’ed with chronic pancreatitis almost 11 years ago and as a result of a pancreatic tumor in late 2013, I had a splenectomy and distal pancreatectomy. I was diabetic previously, but became insulin dependent after losing the beta cells in the pancreatectomy. I have been using Creon for most of the time since my diagnosis with periodic increases in dosing. I am currently taking 9 of the 36000 capsules daily and weigh about 230 lbs. I guess it is pretty apparent that I don’t have any malabsorption problems. The low-fat portion of my diet was not a big deal for me because my wife has always prepared food in this manner, but when I had to cut back on carbs as well as fat, I find it pretty difficult to leave home and find anything acceptable to eat. It is pretty surprising that I have not grown feathers or gills at this point as chicken and fish are prominent in my diet. The only other things I can suggest are two supplements that I have been taking for about 9 months now. The first is just an advanced antioxidant that contains vitamins A, C, E, zinc, selenium, copper, L-Cysteine HCL, and Taurine. There are quite a few other minerals in the formula and I order it from Amazon ( https://www.amazon.com/gp/product/B000Z8WW5I/ref=oh_aui_search_detailpage?ie=UTF8&th=1 ). I began using this when I read that a lot of Gastro-Intestinal doctors were finding this to be helpful in addition to simply treating the pain with opiates. The other one I take is turmeric curcumin with bioperine
( https://www.amazon.com/gp/product/B01HFLCH02/ref=oh_aui_search_detailpage?ie=UTF8&psc=1). This one also seems to help me sleep as that is a problem for me as my pain medicine wires me up and makes sleep difficult. If you have chronic pancreatitis, you could give one of these a try and if helpful, maybe add the other. As I weigh more than twice as much as you, one may be more than enough help for you.
As for a dr. in Austin, I would not have a clue, but with UT there, I would be surprised if the state university medical center did not have some very good Gastro-intestinal docs affiliated with their brand. I have read a few articles extolling the virtues of the system that has given us MD Andersen(sp?) Cancer Center and the research aimed at pancreatic cancer has helped docs discover a lot of things to help those of us who just have very bad pancreas’, but not cancer. Of course we are at an increased risk of same and need to be monitored regularly. I would be happy to tell you anything else I have learned in the past 10+ years if there is anything in particular you have questions about. It is not fun by any stretch, but people sharing information has made the journal a bit more bearable and know you are not alone.

Gary

Liked by adam5991

@jewill

I was diagnosed with endocrine pancreatic insufficiency EPI after having a reaction to estrogen cream and 2weeks later a reaction to reclast infusion a BISPHOSPHONATE.dr didn’t check my chart for allergy to phosphates nor tell me to have any invasive dental work done first .i had diarrhea for over 200 days lost from 130 to 103 lbs .my teeth have started to break off i have a lot of muscle loss i went from dr to dr none knew what i had finally a dr ran fecal test and started me on creon and told to go on a low fat diet.i did research diet ,timing for creon and food ,supplements,exercise.i put my food in blender to get more food in me it is hard to chew.i have done organic for 40 years .I would like to find a Dr in austin tx that knows more about EPI .supplements ,creon and organic food and keeping stress down works I still work but i am 78 so i wont be able to do that much longer. I would love to hear from any one with any informed on EPI or malabsorption.

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Thank you for moving me to digestive health. You ask if chronic pancreatitis was the cause of my EPI it was not it was from a very bad reaction to 2 drugs estergen cream and 2 weeks later a really bad reaction to a infusion of recast a BISPHOSPHONATE over 200 days of diarrhea,lost 25lb and lots of muscle.the only information from my dr was creon  and a low fat diet thank  God for the internet there is a lot of other things you can do.Creon is very important but organic low fat diet,supplements,hydration,controlling stress and weight bearing exercise all help.I am 78  and I have done organic food for the last 30 years. I would like to find a Dr in Austin Texas that knows more about EPI . If any one wants a list of the supplements I take I would be glad to send it.It may take a while working a job,not feeling well and typing with one finger takes longer.but I have done a lot of research and am willing to share also I am open to any information or suggestions.this is a wonderful place to find I have felt very much alone  thank you jewill

@jewill

I was diagnosed with endocrine pancreatic insufficiency EPI after having a reaction to estrogen cream and 2weeks later a reaction to reclast infusion a BISPHOSPHONATE.dr didn’t check my chart for allergy to phosphates nor tell me to have any invasive dental work done first .i had diarrhea for over 200 days lost from 130 to 103 lbs .my teeth have started to break off i have a lot of muscle loss i went from dr to dr none knew what i had finally a dr ran fecal test and started me on creon and told to go on a low fat diet.i did research diet ,timing for creon and food ,supplements,exercise.i put my food in blender to get more food in me it is hard to chew.i have done organic for 40 years .I would like to find a Dr in austin tx that knows more about EPI .supplements ,creon and organic food and keeping stress down works I still work but i am 78 so i wont be able to do that much longer. I would love to hear from any one with any informed on EPI or malabsorption.

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Gary (@gman007), thank you for this reply. I know it is meant for @jewill, but I want to let you know how much this type of response is appreciated. Your experience will help many. Thank you.

It seems as some people have different instructions from their doctors regarding the diet they should be on. I was diagnosed with EPI earlier this year. The PERT that I use is Zen Pep, 40,000 units, I take 12 per day. Before being diagnosed I lost about 20 pounds, from 200 to 178, had severe & urgent diarrhea 3-4 nights per week. My doctor wants me to gain weight back and said it was OK to eat fats as long as I take the pills. I rarely have episodes of diarrhea now, maybe once a month. I have not gained any weight back, but I have not lost any more either. I would like to hear about other people’s recommendations for diet.

Hello @bobinthevillages,

Welcome to Connect, and thank you so much for sharing your information.

Here’s a great comprehensive Nutrition Guide that I found while doing some research about EPI: http://bit.ly/2hwBnwz
I also hope that @jewill and @gman007 will come back with some suggestions for you.

@bobinthevillages, may I ask what led to the diagnosis of EPI?

@bobinthevillages

It seems as some people have different instructions from their doctors regarding the diet they should be on. I was diagnosed with EPI earlier this year. The PERT that I use is Zen Pep, 40,000 units, I take 12 per day. Before being diagnosed I lost about 20 pounds, from 200 to 178, had severe & urgent diarrhea 3-4 nights per week. My doctor wants me to gain weight back and said it was OK to eat fats as long as I take the pills. I rarely have episodes of diarrhea now, maybe once a month. I have not gained any weight back, but I have not lost any more either. I would like to hear about other people’s recommendations for diet.

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I think the difference in diet recommendations are likely a result of the physician’s experience with the disease and what has and has not worked for their patients. A compromised pancreas makes it more difficult to digest all food and fat is the most difficult of the three types of food we consume to digest. If you have had no problems with consuming fat, I am envious. Even with digestive enzymes (I have also taken Zenpep at near the level you do as well as pancrealipase (sp?) and another generic enzyme before they were removed from the market), most of us with EPI are racked with pain after eating large amounts of fat. I don’t try to get to zero grams, but something below 40 grams works best for me. I also try to avoid large meals instead opting for 4-6 of 300 calories or less. My total calorie goal is about 1600/day unless I have an unusually long exercise session or golf when I am losing lots of fluids.

@bobinthevillages

It seems as some people have different instructions from their doctors regarding the diet they should be on. I was diagnosed with EPI earlier this year. The PERT that I use is Zen Pep, 40,000 units, I take 12 per day. Before being diagnosed I lost about 20 pounds, from 200 to 178, had severe & urgent diarrhea 3-4 nights per week. My doctor wants me to gain weight back and said it was OK to eat fats as long as I take the pills. I rarely have episodes of diarrhea now, maybe once a month. I have not gained any weight back, but I have not lost any more either. I would like to hear about other people’s recommendations for diet.

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Wow, totally different. I have no pain after eating, even larger meals. Sorry.

How about your weight? Did you lose weight? Etc.

I have no idea how I got EPI. Never have had pancreatitis or nor was I a heavy alcohol drinker.

I read someplace that only 8 out 100,000 have EPI. Knowing that, I am not certain how much experience any GI doctor could have.

@bobinthevillages

It seems as some people have different instructions from their doctors regarding the diet they should be on. I was diagnosed with EPI earlier this year. The PERT that I use is Zen Pep, 40,000 units, I take 12 per day. Before being diagnosed I lost about 20 pounds, from 200 to 178, had severe & urgent diarrhea 3-4 nights per week. My doctor wants me to gain weight back and said it was OK to eat fats as long as I take the pills. I rarely have episodes of diarrhea now, maybe once a month. I have not gained any weight back, but I have not lost any more either. I would like to hear about other people’s recommendations for diet.

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Gman007 Thank you for your reply and the information on supplements.I take all of these and a lot of antioxIdants alphs lipoic acid, N A C,acetyl.-l-cartinine ,vit a ,e selenium . A lot of the ones i take help with brain function.I like to be able to think clearly,and at almost 80 that takes more working at.I agree with bobinthevillages about the lack of experience any GI Dr has.here is a web sight on dosing of creon wwwcfhcp/dosingguide. I think that is the one that says Too high dose of creon is associated with FIBROSING COLONOPATHY. i have less pain if i have smaller meals and control my stress.I am going to try to contact the collage here in Austin to try to find a Dr with more experience treating EPI any information on that would be good

@bobinthevillages

It seems as some people have different instructions from their doctors regarding the diet they should be on. I was diagnosed with EPI earlier this year. The PERT that I use is Zen Pep, 40,000 units, I take 12 per day. Before being diagnosed I lost about 20 pounds, from 200 to 178, had severe & urgent diarrhea 3-4 nights per week. My doctor wants me to gain weight back and said it was OK to eat fats as long as I take the pills. I rarely have episodes of diarrhea now, maybe once a month. I have not gained any weight back, but I have not lost any more either. I would like to hear about other people’s recommendations for diet.

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Bob, my experience has been that major pancreatic treatment centers are where you find docs who have the most experience with anything pancreatic. I live in upstate SC, about a three hour drive to the Medical Univ. of SC and they have some amazing doctors there who treat everything related to the pancreas and in large amounts. My surgeon is recognized as one of the best in the US and also does a lot of work in the Hollings Cancer Center there with patients who have pancreatic cancer. They also have some great endoscopy therapist’s who have given me tremendous relief with stents to help pancreatic drainage and a balloon therapy that has removed pancreatic stones. I think it is likely to be these type of high volume centers where the best doctors for less common illnesses are to be found. I know the May Clinic facility in Jacksonville, FL has some very prominent pancreas docs as well as one of the top surgeons.
My weight has gone up since I was dx’ed. Some of that is related to constant inflammation of my pancreas and stomach in general (pancreatic issues have led to the discovery, if not the cause, of IBS-C, a very peptic stomach, highly acidic, some minor colon issues, etc., etc., etc…) and some is related to a lot lower level of activity due to simply not having the energy to exercise, and the fact that my pain meds make me hungry which is the reverse of many folks reaction. I am also insulin dependent as a result of lower insulin production in my pancreas as I have lost at least a third of my beta cells, if not closer o a half. I gained about ten pounds over the first several weeks of insulin use. My weight can also vary by ten pounds over 2-3 days depending on the level on inflammation around my pancreas. During my longest hospitalization for an acute attack I went from about 225 lbs. to 255 and back down to 205 within three weeks. That is comparable to a gestation period of pregnancy with the weight changes in 3 weeks instead of 37.
Sorry, I tend to be overly verbose. How did you discover you had EPI and does that mean you are insulin dependent? Is the primary result of your disease being a lack of digestive enzymes? How long have you been dx’ed with EPI?

@bobinthevillages

It seems as some people have different instructions from their doctors regarding the diet they should be on. I was diagnosed with EPI earlier this year. The PERT that I use is Zen Pep, 40,000 units, I take 12 per day. Before being diagnosed I lost about 20 pounds, from 200 to 178, had severe & urgent diarrhea 3-4 nights per week. My doctor wants me to gain weight back and said it was OK to eat fats as long as I take the pills. I rarely have episodes of diarrhea now, maybe once a month. I have not gained any weight back, but I have not lost any more either. I would like to hear about other people’s recommendations for diet.

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Thank you for this excellent information. I currently live in Central Florida, The Villages, a massive retirement community. However, it is likely I will be moving to Amelia Island in April, so your suggestion to go to the Mayo Clinic in Jacksonville is a great resource.

I was having urgent diarrhea in the middle of the night 3-4 times a week. Earlier this year after seeing my family doctor and a urologist I finally got to GI doctor. He did a colonoscopy and ordered some stool tests. All the tests came back normal except for 1, the elastase was severe. I have never had GI issues before this, I am 66.

Once I went on 12 Zen Pep a day the urgent diarrhea virtually stopped making the doctor feel as though he had the correct diagnosis. However, I am still not sure as I never had any of the conditions (pancreatitis or alcohol issues or cystic fibrosis) which seem to cause it.

My concern is my weight as I am the lowest weight since being a teenager and I cannot gain any weight no matter what I eat. I am also anemic so I just started taking iron supplements. Also, I have had Cat scans, MRI’s and endoscopy procedures and thankfully no cancer has been detected.

I am really appreciative of this website as this has been my only opportunity to discuss my EPI issue with anyone who understands it.

@bobinthevillages

It seems as some people have different instructions from their doctors regarding the diet they should be on. I was diagnosed with EPI earlier this year. The PERT that I use is Zen Pep, 40,000 units, I take 12 per day. Before being diagnosed I lost about 20 pounds, from 200 to 178, had severe & urgent diarrhea 3-4 nights per week. My doctor wants me to gain weight back and said it was OK to eat fats as long as I take the pills. I rarely have episodes of diarrhea now, maybe once a month. I have not gained any weight back, but I have not lost any more either. I would like to hear about other people’s recommendations for diet.

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Once you are closer to Jacksonville, I would look into a second opinion just for your peace of mind. If you are digesting everything it would seem you could add weight if that was your goal. The GI you saw may have been spot on, but no reason not to be completely comfortable with what you are doing. Do you have a pretty well balanced diet with veggies and fruits, etc… I have to try to get a lot of my calories from protein because I am so limited on fts and carbs, so that may have some impact on my weight maintenance.

@bobinthevillages

It seems as some people have different instructions from their doctors regarding the diet they should be on. I was diagnosed with EPI earlier this year. The PERT that I use is Zen Pep, 40,000 units, I take 12 per day. Before being diagnosed I lost about 20 pounds, from 200 to 178, had severe & urgent diarrhea 3-4 nights per week. My doctor wants me to gain weight back and said it was OK to eat fats as long as I take the pills. I rarely have episodes of diarrhea now, maybe once a month. I have not gained any weight back, but I have not lost any more either. I would like to hear about other people’s recommendations for diet.

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The thinking clearly is a chore for me as well. I am a bit more than 2 decades younger, but have been on heavy doses of opiates for the pain that I have chronically from my pancreas, scar tissue, phantom pain from missing an organ and parts of others, and various other stomach ailments. I do pretty well if I am focused on a discussion, but my wife often says remember, “we talked about that” and I have no memory of it because I was busy writing a reply to someone online. I will have to look into your other supplements.

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