New to pancreatic insufficiency. What does this journey look like?

I understand completely. You are not alone! Please contact the National Pancreatic Foundation, they are a wealth of information and will help you with any questions you have and also have great links so you can learn more.
It’s not a very well known disorder. I was misdiagnosed for 30 years. All that wasted time and suffering. Ugh.
Now I’m thriving and you can too. Work with a RD (registered dietitian). Please don’t be fooled by “wanna be nutritionists” that have “degrees from diploma mills” that want to sell you supplements! Your best sources are a good Gastro doctor and a RD! Take your Creon and you will learn what is more easily digestible for you!!! All the best 🫶🏽

In response to the OP (sadiecat) and unlike grannydee - my experience to date under the care of the staff at my local university hospital has been--
(1) despite several tries, no success at finding a dietician who was any help.
Sadly, I have learned more online
(2) Creon dosing has been a nightmare since the correct prescription can vary from batch to batch, something that my care team seems to be oblivious to, although I have to give my current oncologist credit for being engaged in my care and very willing to adjust dosing prescription as necessary
(3) I have discovered that in fact I've probably had splenic flexure syndrome most of my adult life (it goes along with I B S).
A long as I stuck to the foods I had learned over years to avoid I could be symptom-free (the no-no list is headed by garlic).
(4) About January 2022, my list of tolerated foods started growing shorter and shorter. In retrospect, I suspect this was when E P I (exocrine pancreatic insufficiency) first started to manifest itself.
(4) Recently my most troubling symptoms are related to BAM (biliary acid malabsorption). LOTS of gas and bloating, with occasional watery diarrhea.
This had led me into yet another phase trying to find the right food to eat since I do not want to be sucked further into the pharmaceutical approach (I already have "chemo feet" &/or "venous insufficiency" following a course of gemcitabine - abraxane therapy for pancreatic cancer. This is a regular adverse effect of chemotherapy that my first oncologist neglected to warn me about; the sad part being that much of this is preventable.
I am lucky to be very gradually recovering some normal sensation. Some people never recover, and until you develop these symptoms you may have no idea how much your balance depends on having normal sensation below the knees -- not to mention stamina and strength.

Hi, @sadiecat. Facing a new diagnosis can be scary, frustrating and overwhelming. Asking what the journey ahead can be like from others who have been there is a great first step. I'd like to invite @vuk, @susanh824, @sunlover, and @laker67 to this discussion to share some of their journey. They have all posted in another discussion titled New to Exocrine Pancreatic Insufficiency - What Helps? (https://connect.mayoclinic.org/discussion/exocreine-pancreatic-insuffencyepi/).

That is a great discussion to check out as well, but your question about what lies ahead after a diagnosis is a great question as well. @sadiecat, have you discussed your fear of eating with your local GI clinic and the best way to approach your diet moving forward after diagnosis?

I have been trying to locate one in my area who takes Medicare or who will even return my calls! I live in Florida so lots need help. I started Creon & FODMAP in Dec.
I have been on strict FODMAP diet for 8 months & off all supplements till recently when I begged my gastro to let me please take calcium since my osteopenia turned to osteoporosis this year. He was Agst all supplements. I have used the Monash Univ app & bought 2 books
I have read that you shud not stay on strict FODMAP for a length of time. My dr retired & i am waiting to see new one but all things indicate deficiencies.

I want to reintroduce some foods that had been eliminated, but the book on FODMAP is based on being IBS Free! EPI, as you know is in a different league.
1. Have you had any success In reintroducting foods over the years???
2. I contacted names from list of Academy of Nutritions and Dieticians.
Does anyone have any suggestions of how i can get a Dietician who knows EPI
Most were focused on other issues
Appreciate any help, I feel like I am in limbo. Thanks for listening

To. @sadiecat
Please check out myAbbVieAssist!
My dr never told me about it & I spent thousands of dollars running up my credit card till I heard about it
If you qualify you can get it free. I’m still a work in progress and still learning but the FODMAP diet has helped also.
Best of luck

Hi Sadie
I too an fairly new and have only attempted this chat once before. Besides the physical issue, What stressed me out was the price of the Creon. After my pharmacist told me the price I stood there crying & put it on my credit card.
But here’s the good news. Someone told me I could apply for assistance and did. If this is repetitive, I apologize. I just did not want you to go through what I did since my dr never told me about it. Not sure if you got my previous message

I hope that I can explain to you they “why” I chose my nutrition! We are different. Obviously, but what that means to each individual is that we have to start with a list of foods that are TRADITIONALLY easier to digest, ALL the whole realizing that what YOU are able to tolerate may be radically different than what someone else with EPI can tolerate!
This is just one of the reasons WHY it can look so different from one person to the next with EPI! For instance,
I’ve met others with EPI that cannot tolerate dairy, but I can…others that can digest pork, I cannot! A registered dietician can really be a big help.
All the best! Advocate for help, understanding and respect! You deserve it!

Thank you for the background of your journey, a cancer diagnosis changes EVERYTHING!
It means finding an RD is even more important!
They have to have a degree AND graduate school AND work with another RD for a year to complete their registration, and stay up to date with their continuing education requirements.
I hope you can find one that works with cancer patients and EPI!
The nutrition is so important and is unique to each individual. I was prescribed ZENPEP 6 times a day, but with the nutrition I have been able to use just ONE a day! I hope everyone understands WHY I push nutrition and working with a RD so much!
Thank you for responding, I’m praying for the very best for you🫶🏽

grannydee -- Thanks for your reply.
Right now I feel as if I'm making some progress in sorting out what works to alleviate BAM/BAD since that is probably my most distressing complaint right now. The recommendation for a higher fiber diet is rather the reverse of the diet I've been getting. Fingers crossed that this change does bring some reliable lasting relief. Again, I'd like to stress that I've learned about this condition online, and haven't had any help yet from any sources within my university health-care system. I don't think the expertise exists within this particular institution.
Of course, in some ways, I'm my own worst enemy, in falling prey to self-sabotage! I do think that "falling off the wagon" when it comes to following a strict diet is more complicated than a lack of willpower. In my case there are issues of various cravings (how long does it take drinking plain water, before a craving for salt materializes; what happens when your doc advises use of Lite Salt because of "chemo feet" [and shins] &/or venous insufficiency following a course of gemcitabine - abraxane. I have to say I do blame my first oncologist who neglected to say anything about this routine complications, which can be prevented / alleviated in many cases. So, yes, I have anger issues, in addition to other stressors (an isolated life out in the "sticks") that are currently poorly-managed.
On this trip, I am often reminded that western medicine as practiced in the US tends to compartmentalize symptom management and lean heavily in the direction of pharmaceutical treatment. Having noticed that when one symptom starts to become prominent, others do too, I'm beginning to wonder if the POV of one of my wise friends isn't "spot on" -- that we need to be treated as a whole, not in bits & pieces.

Hi
are you in Australia by any chance ? Victoria ? im in shepparton neither the local hospitals dietician nor Dr's know correct diet for post Distal Pancreotomy & Splenectomy plus after 8 years if Creohn im now Type 2 Diabetic

Is the Nat Pan Foundation based in Melb or Sydney do you know ?
Thanks for posting 🙏🙏
Cheryl