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

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@ajh5285

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.

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Replies to "In response to the OP (sadiecat) and unlike grannydee - my experience to date under the..."

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🫶🏽