EPI - Need Advice

I forgot to add that to my amazement, I am not diabetic. My A1C is 5.4.

Hi @january1101 and Welcome to Connect. You determination to keep fighting is inspiring in the midst of what must be a difficult time.

I wanted to introduce you to @julie1976 @gaylea1 and @hgarm have all mentioned pancreatitis before and may be able to offer you support as you look for solutions.

@january1101, you mentioned that you can more or less only eat sugars. What all are you eating then? If you have to avoid fat and foods too high in fiber?

@ethanmcconkey Thank you so much for writing to me. I can't tell you how much I appreciate it. I have been drinking soda and eating carbs or cinnamon rolls. I had less leakage that way. Then when I found out I am malnourished and lacking in several vitamins and minerals, I started drinking water and trying to eat some protein. It makes the diarrhea worse, but I have to have it in my system.

Wow, I just saw your post and it is 2022. I hope you are ok and have figured out how to handle your EPI. I have been diagnosed with chronic pancreatitis (although I never had any pain with it) and with EPI. I would recommend the Mayo Clinic since they are very thorough, and there are many causes for EPI. I was told the opposite of what you were told. I was told to eat lots of fresh fruits and vegetables because if they are uncooked they have their own digestive enzymes to help you digest them. I also use honey instead of sugar since it digests starches, sugars, and proteins. Avocado helps digests and metabolize fats. I am not on enzyme replacement since I had a bad reaction to Creon, but haven't tried Zenpep yet due to the costs. Anyway, I am, like you, a fighter. I believe their are more ways to cure this disease than claimed. Keep hope.

Hi, I’m in the process of finishing up 72 hours of high fat eating in preparation for the fecal elastase and other stool testing on Tuesday. Right now, my doctor suspects that I have either EPI or chronic pancreatitis. What surprises me after forcing down all that junk food is that I don’t have diarrhea. In fact, I feel extremely bloated and constipated, despite taking Miralax each of the last two days. Does the constipation rule out those two conditions? Last week, I ate a couple of pieces of pizza, and had many bouts of diarrhea the next day, My most recent abdominal CT scan showed that my pancreas looked “atrophic.” Yet I seem to bounce back and forth between constipation and diarrhea.

I’ve lost 60 lbs unintentionally and have no appetite. I fill up quickly. Pain is in the upper left to middle area of my abdomen, and radiates into my back. Any ideas?

I can identify with many of my symptoms and await a response. Thanks

Hi Susan,

I've been thinking about you and wondering if you're any further along in getting a diagnosis. After reading your post, I see that your doctor suspects EPI or chronic pancreatitis. I hope you get your test results soon and can work towards a treatment plan.

An interesting change happened to me after the prep for a colonoscopy I had recently. I was on 40mg of esomeprazole magnesium for acid reflux for 6 weeks, and I stopped taking it for the two days of prep because I would not be eating a meal to activate it. To my surprise, the steatorrhea stopped and so far has not returned. My stools are still abnormal, though. When I met my doctor after the colonoscopy, she said I could take Imodium or Pepto Bismol to slow the fast and frequent bouts of steatorrhea. I did take it the day after my colonoscopy and had constipation for about a week but was still able to pass stools. So, it's a mystery to me why the steatorrhea stopped. Was it the fast, stopping esomeprazole magnesium or Imodium, or a combination of the three?

I've read esomeprazole magnesium can help with taking pancreatic enzymes for EPI, but it's also not recommended for long term use. It's recommened for 4-8 weeks, so that's why I decided to not take it anymore. I'll be seeing my GI on Friday and find out what she advises to do.

I apologize for the long post, but it's been such a roller coaster and I'm still losing weight. I'm using Vital Nutrients pancreatic enzymes while waiting for Creon to arrive in the mail. Because I have severe insufficiency, I think they're not strong enough. It's also still difficult to eat and knowing what to eat to increase my caloric intake. My doctor said to drink Ensure, but I'm still not getting enough calories in a day due to the major diet restrictions for EPI.

Thank you for listening and all the best to you,
Linda

Hi Linda,
I’m so sorry that you still don’t have your Creon, and are continuing to lose weight. The story about the colonoscopy is intriguing. I wonder what stopped the steatorrhea? That’s one symptom I don’t actually have, though I guess it is possible to have EPI without it.

I’ll keep you posted!

Hi Susan,
EPI has so many faces and it can also seem to change as we age.
I’ve been diagnosed for 3 years and take Zenpep up to 6 times a day after moderate to severe diagnosis.
I am hoping that you will receive your prescription quickly so your journey can begin and that you will thrive.
It can be very discouraging, I know!
A registered licensed dietitian can be a huge help in tandem with your gastro practice and enzyme therapy.
Everyone is different and while enzyme therapy is vital for our bodies to process our nutrition properly, our digestive system will never be perfect.
Those of us with EPI…even with enzyme replacement therapy find that we have to eliminate the foods that just do NOT digest properly.
Some can digest dairy, while others cannot.
Some can digest beef, while some cannot.
Some can digest sucrose, some, no way!
It’s just a truly weird part of EPI.
The National Pancreatic Foundation is a huge help and source of information so that we don’t feel so isolated in our diagnosis.
I hope this helps you understand that your journey with EPI is truly a learning process.
Many insurance companies will cover seeing a registered licensed dietitian if your gastro practice will assist you in finding one that is familiar with working with EPI patients.
Finding your particular foods that serve your nutritional needs the best is key to thriving despite this diagnosis.
I’m right here along side you in our community and hope you join in the National Pancreatic Foundation. Please go to their website and you will see many fellow EPI survivor stories that illustrate some of these challenging issues.
EPI wasn’t even discovered until the last 25 years! While that may not seem like a big deal, new research is vital and educating others is so important.
So many of us were diagnosed fairly late in life.
My biggest hope is that those that have EPI will receive a diagnosis when they are young so that they won’t experience the cumulative damage that impact their digestive system.
Please feel free to ask questions.
All the best,
Granny Dee

Hi, Grannydee,
I’m in an Uber on the way to the lab right now to drop off my fecal elastase. May have to redo my 72 hour stool fat test. But I hope to get a diagnosis soon! You’ve been so helpful, and I really appreciate it!
Susan