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

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@ajh5285

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.

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Replies to "grannydee -- Thanks for your reply. Right now I feel as if I'm making some progress..."

Yes, I agree that our doctors need to work together…in a perfect world! Ha!
I do not know if this idea will help…but here is how I approach keeping my specialists on the same page:
I keep a journal of my
1. symptoms
2. medications
3. Diet
4. exercise activities
I make a copy for my file that I maintain at home and one for each specialist so we are ALL on the same page.
This includes my
primary care physician,
gastroenterologist,
Cardiologist,
allergy specialist
I try to keep everyone on the same page and they absolutely love and appreciate that I bring the this to my appointments.
I give it to the nurse that does my intake for my appt and the dr has read it and has it in their hands when they come in the exam room and asks me questions. This keeps us on track and also ensures that ALL of MY questions are answered also.
I do try to keep my records succinct and to the point because my time is valuable to me just as the specialists time is to them! It’s professional, to the point, accurate and that way I don’t forget anything important.
I hope this helps.
Ps, printed out, it’s usually one page, front and back, using an easy to read font.