I was diagnosed with EPI 3 years ago after Covid. Lost 60 lbs in 10 days.
I am still on pancreatic enzymes which is a pain because there are so many pills, but wouldn't be able to leave the house without them.
Sorry to hear your going through this.
I also developed EPI having covid and 3 months of diarrhea. There is a connection between covid and EPI. I am finding it fairly easy to manage the creon pills and eating healthy food.
I miss having a glass of wine, but can manage the non drinking aspect of this disease.
I just had a blood test that shows low vitamin E. So I'm working on that. I hope you are managing.
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.
I have short bowel syndrome from previous colon surgeries & was just diagnosed w EPI & ordered to take Creon. First of all, it cost me $1,300 to pick up my rx, & thst is with Medicare Part D. I do think it has slowed down my output from my stoma, but this price for Creon is ridiculous. Finding it hard not to eat sugar, as I have always had a sweet tooth. I tried to go to Mayo after experiencing a bowel obstruction that resolved itself. They said they only take patients who are critical.
I also developed EPI having covid and 3 months of diarrhea. There is a connection between covid and EPI. I am finding it fairly easy to manage the creon pills and eating healthy food.
I miss having a glass of wine, but can manage the non drinking aspect of this disease.
I just had a blood test that shows low vitamin E. So I'm working on that. I hope you are managing.
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.
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.
I have short bowel syndrome from previous colon surgeries & was just diagnosed w EPI & ordered to take Creon. First of all, it cost me $1,300 to pick up my rx, & thst is with Medicare Part D. I do think it has slowed down my output from my stoma, but this price for Creon is ridiculous. Finding it hard not to eat sugar, as I have always had a sweet tooth. I tried to go to Mayo after experiencing a bowel obstruction that resolved itself. They said they only take patients who are critical.
It's probably too late now because open enrollment is over for Medicare Part D prescription drug plans. Did you have an insurance broker help you with your plan? I'm getting a really good price for Creon with AARP United Health Care. I'll pay around $94 a month and it may be less next month. I have another med that is costly, also, that I got a good deal on.
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.
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.
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.
A main symptom of EPI is difficulty digesting fat and a lower-fat diet is often recommended. You can do this yourself by substituting low or non-fat foods for higher/whole fat foods, but you might find it more helpful to consult a registered dietition/nutritionist for help. A pancreatic elastase value of 52 indicates severe EPI. Mine was 34 before starting Creon a bit over a year go and my last fecal pancreatic elastase test two months ago showed an improvement too 100 - considered "moderate" EPI. A value of 200 is considered normal. Hope this helps!
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.
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I’ve heard that also. Keep us posted!
I also developed EPI having covid and 3 months of diarrhea. There is a connection between covid and EPI. I am finding it fairly easy to manage the creon pills and eating healthy food.
I miss having a glass of wine, but can manage the non drinking aspect of this disease.
I just had a blood test that shows low vitamin E. So I'm working on that. I hope you are managing.
-
Like -
Helpful -
Hug
2 Reactionswhat 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.
-
Like -
Helpful -
Hug
1 ReactionI have short bowel syndrome from previous colon surgeries & was just diagnosed w EPI & ordered to take Creon. First of all, it cost me $1,300 to pick up my rx, & thst is with Medicare Part D. I do think it has slowed down my output from my stoma, but this price for Creon is ridiculous. Finding it hard not to eat sugar, as I have always had a sweet tooth. I tried to go to Mayo after experiencing a bowel obstruction that resolved itself. They said they only take patients who are critical.
-
Like -
Helpful -
Hug
1 ReactionI 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.
-
Like -
Helpful -
Hug
1 ReactionDiagnosed 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.
-
Like -
Helpful -
Hug
1 ReactionIt's probably too late now because open enrollment is over for Medicare Part D prescription drug plans. Did you have an insurance broker help you with your plan? I'm getting a really good price for Creon with AARP United Health Care. I'll pay around $94 a month and it may be less next month. I have another med that is costly, also, that I got a good deal on.
-
Like -
Helpful -
Hug
3 ReactionsI 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.
A main symptom of EPI is difficulty digesting fat and a lower-fat diet is often recommended. You can do this yourself by substituting low or non-fat foods for higher/whole fat foods, but you might find it more helpful to consult a registered dietition/nutritionist for help. A pancreatic elastase value of 52 indicates severe EPI. Mine was 34 before starting Creon a bit over a year go and my last fecal pancreatic elastase test two months ago showed an improvement too 100 - considered "moderate" EPI. A value of 200 is considered normal. Hope this helps!
-
Like -
Helpful -
Hug
2 ReactionsNo 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.
-
Like -
Helpful -
Hug
2 Reactions