I don't have an appointment at Mayo Clinic. I just subscribe to the email newsletter for information. I'm not sure what more I can learn about having EPI. My elasticity test was 123, which is near the chronic number of 100. I get periodic blood tests to show the state of my health and my vitamin level. I eat what is recommended for EPI and have ordered all the cook books and information books I could find on Amazon. I follow a careful diet and maintain my weight. I drink a premium protein drink every day and take a multiple vitamin, calcium/D pill, probiotic. At 82 years old, I have energy and walked 4.5 miles yesterday. Gather as much information you can find on EPI.
Thank you! I take lots of supplements w electrolytes , potassium & magnesium & get 2 infusions a week & 2 lab draws a week. Also take probiotic daily. Still go to lunches &?dinners w friends & famiky& movies &?plays. Just have to use bathroom to empty stoma pouch about once an hour.
what was your secret to getting an appt. at Mayo? I have been trying for 2 months and in December they say they are booked through the end of February and haven't open appts. beyond February. Thanks for any suggestions and glad you will be getting help and please keep us updated on what Mayo does in terms of testing.
Sorry for the late reply. I am sure i am not going to get in right away. I have spoke with some people. I have a call scheduled for tomorrow and a video call for next week. don't know when i will get in.
Diagnosed with EPI three months ago. Have trouble with fat. My primary gastro doctor was no help with diet. My elasticity test was 52. Where would that put me on the range? What cookbooks have you found helpful! Am on Creon.
No cookbooks I look on line a little. I spend some time on a Facebook website."Living with Exocrine Pancreatic Insufficiency (EPI) Support". It is a pretty great website but also extremely difficult to read at times. Many peoples problems but everyone tries to help with info that sometimes is over abundant Eating turkey and chicken like there is no tomorrow. Sick of it
I haven't been to Mayo, but luckily, I found a great GI outside Chicago. My elasticity test was 356. I have Celiac, Colitis and now they believe PSC as well. Can you take zenprep? This has really helped me.
Thank you! I take lots of supplements w electrolytes , potassium & magnesium & get 2 infusions a week & 2 lab draws a week. Also take probiotic daily. Still go to lunches &?dinners w friends & famiky& movies &?plays. Just have to use bathroom to empty stoma pouch about once an hour.
I'm not sure what a stoma pouch is. What is your diagnosis. I have EPI and manage it with Crean pills before every meal. It sounds like you are managing this and still living your life.
Good for you, and I admire your courage and attitude.
I'm with Dr. Sasso from New Lenox (Digestive Disease Consultants). He has an office in New Lenox at the Silver Cross Hospital. His staff are great, and they truly put the patient first! If I could give him 10 stars I would.
No one ever told me my EPI was severe. This was very helpful. My Gastro nurse practitioner said not to stress over my diet snd to take immodium for diarrhea. Went to dietitian and put on 30 grams of fat per day. Did not restrict food. Trial and error. Last night I had avocado and paid the price.
Wow, that NP does not understand what EPI is like. I’d suggest seeing a registered dietitian who has dealt with EPI patients if possible.
I also have EPI as well as SIBO and lactose intolerance., bile reflux, etc… I take Zenpep as well as some other digestive enzymes. Have you tried eating lean meats like 93-99% fat free ground turkey, white fish or lean chicken breasts? I do okay with these but fattier items like salmon hurt to eat and result in steatorrhea. I’ve found I can no longer tolerate high fat content foods like mayonnaise, avocados or nuts. I bake a lot of zucchini, yellow squash and spaghetti squash with salt as my seasoning and use that as my base rather than bread or pasta. It is hard to maintain your weight though due to limited calories as well as malabsorption. My registered dietitian has me on protein shakes made by OWYN.
It took me a while to figure out how many Zenpep to take and at what point of eating. I now split my 3 tablets to first bite of food, 1/2 way through meal and one at end. I used to eat slowly but have learned to finish up within 1/2 hour. Dietitian suggest small meals more often.
Hope this helps.
Sorry for the late reply. I am sure i am not going to get in right away. I have spoke with some people. I have a call scheduled for tomorrow and a video call for next week. don't know when i will get in.
After 3 years of living with EPI I also find a low fat diet works best for me. I kept a food diary because the dietician in my area thought I had been bitten by a tick and developed a red meat allergy called alpha gal syndrome. Luckily My GI was much more helpful with diet suggestions. The OWYN shakes are good and if we are going to a restaurant with an iffy menu, I take one of them. Thanks for all the positive messages.
I’ve been on Creon for around 6 months. It helps abate the symptoms, but I’m still having trouble gaining weight. I have found that Kate Farms protein drinks don’t particularly agree with me. Perhaps too much fat and sugars? My drink of choice has been Fairlife’s Core Power protein drinks. Less fat and sugar, and tasty, although I’m a bit concerned with the Carageenan ingredient. I’ve also found that fatty red meat causes the extremely unpleasant symptoms of steatorrhea and smelly gas. If I’m having red meat, I’ll take 3 Creons with my meal instead of two.
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Thank you! I take lots of supplements w electrolytes , potassium & magnesium & get 2 infusions a week & 2 lab draws a week. Also take probiotic daily. Still go to lunches &?dinners w friends & famiky& movies &?plays. Just have to use bathroom to empty stoma pouch about once an hour.
Sorry for the late reply. I am sure i am not going to get in right away. I have spoke with some people. I have a call scheduled for tomorrow and a video call for next week. don't know when i will get in.
No cookbooks I look on line a little. I spend some time on a Facebook website."Living with Exocrine Pancreatic Insufficiency (EPI) Support". It is a pretty great website but also extremely difficult to read at times. Many peoples problems but everyone tries to help with info that sometimes is over abundant Eating turkey and chicken like there is no tomorrow. Sick of it
I take Zenpep (40.000) who is your gi outside of chicago if you don't mind my asking
I'm not sure what a stoma pouch is. What is your diagnosis. I have EPI and manage it with Crean pills before every meal. It sounds like you are managing this and still living your life.
Good for you, and I admire your courage and attitude.
I'm with Dr. Sasso from New Lenox (Digestive Disease Consultants). He has an office in New Lenox at the Silver Cross Hospital. His staff are great, and they truly put the patient first! If I could give him 10 stars I would.
Wow, that NP does not understand what EPI is like. I’d suggest seeing a registered dietitian who has dealt with EPI patients if possible.
I also have EPI as well as SIBO and lactose intolerance., bile reflux, etc… I take Zenpep as well as some other digestive enzymes. Have you tried eating lean meats like 93-99% fat free ground turkey, white fish or lean chicken breasts? I do okay with these but fattier items like salmon hurt to eat and result in steatorrhea. I’ve found I can no longer tolerate high fat content foods like mayonnaise, avocados or nuts. I bake a lot of zucchini, yellow squash and spaghetti squash with salt as my seasoning and use that as my base rather than bread or pasta. It is hard to maintain your weight though due to limited calories as well as malabsorption. My registered dietitian has me on protein shakes made by OWYN.
It took me a while to figure out how many Zenpep to take and at what point of eating. I now split my 3 tablets to first bite of food, 1/2 way through meal and one at end. I used to eat slowly but have learned to finish up within 1/2 hour. Dietitian suggest small meals more often.
Hope this helps.
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1 ReactionI hope all will go well for you with your interaction with Mayo. Thanks for your response.
After 3 years of living with EPI I also find a low fat diet works best for me. I kept a food diary because the dietician in my area thought I had been bitten by a tick and developed a red meat allergy called alpha gal syndrome. Luckily My GI was much more helpful with diet suggestions. The OWYN shakes are good and if we are going to a restaurant with an iffy menu, I take one of them. Thanks for all the positive messages.
I’ve been on Creon for around 6 months. It helps abate the symptoms, but I’m still having trouble gaining weight. I have found that Kate Farms protein drinks don’t particularly agree with me. Perhaps too much fat and sugars? My drink of choice has been Fairlife’s Core Power protein drinks. Less fat and sugar, and tasty, although I’m a bit concerned with the Carageenan ingredient. I’ve also found that fatty red meat causes the extremely unpleasant symptoms of steatorrhea and smelly gas. If I’m having red meat, I’ll take 3 Creons with my meal instead of two.