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Okay,  I have a new GI who, after I complained about to many bathroom trips ordered a scope and stool test.  Scope came out totally normal. Stool test is my dilemma. Calprotectin was 8 mcg, normal, BUT  Pancreatic Elastase, fecal, was 76, very low, and called severe exocrine pancreatic insufficiency, EPI.



He prescribed Creon, but pharmacy called and ask me if they should fill it because it is $1230 for 30 day supply.  Medicare and my not so cheap supplement insurance with Aetna doesn’t cover it.  

I was told that Creon and digestive enzymes  from the health food cause diarrhea and cramps.  
I went to the Gi exactly for that so now they want me to take medicine that causes that!!! Well, I never have cramps but my bathroom trips are plenty after 10 years with a pouch.   EPI doesn’t digest food or fat properly and can cause malnutrition,

I weigh 113 lbs and would love to weigh about 10 more pounds with no avail, BUT all my labs are always good… so I must absorb nutrients.

What I am supposed to do.

I worry  myself sick.  We just moved and I can’t get use to the new doctors!!!

Please help

thank you!

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I have been using OTC stuff including "Now Plant Enzymes" to digest grains and fats and generic Bean-O for digesting cruciferous veggies and beans.  These have helped increase my energy level after eating and they also reduce bloating/gas/trips to the bathroom.  I pair that with organic psyllium husk powder to bulk up the stool and give my digestive system more time to absorb nutrients from food - it reduces the watery stool effect and decreases transit time. Not sure if this combination will have the same intensity or impact as CREON, but it could help and it's way cheaper. 

Another avenue to try is to ask your doctor for a different Rx that is on your Medicare formulary. Often there are generic or other brands that are covered. Plus, it is possible that your doctor needs to prescribe it as an exception to override the non-formulary restriction. But Medicare can be tricky.

I did a quick search online and it seems that there are 5 brands of pancreatic enzymes that are FDA approved. Individual plans may have coverage for one or another brand. If you can look up the Medicare formulary for your plan, that will get you a head start on what to ask for. Formularies are not the same for all Medicare plans. Plus, if you do not have a Medicare part D plan or Advantage Plan (which includes part D) you really need to add it if you can. You have until March to change your plan if you are already in an Advantage plan. I did that once, but I’ve always have had an Advantage plan. You can contact Medicare to see what options you have, since you just found out about this new diagnosis.

Of course, you could go with OTC enzymes, but they are sold as supplements and are not regulated.

Jan

Last edited by Jan Dollar

@grateful I also use Part D as my drug insurance coverage, and have always paid less for the mega $$$ pricey meds by asking my doc to fax the prescription to a Canadian pharmacy. I happen to use Mark's Marine Pharmacy (website is https://canshipmeds.com/ ).

The downside is the meds are shipped to you, so you won't have them "same day", but the folks at Mark's Marine have a toll free number and the pharmacists are always super helpful in walking me through the sourcing and shipping options.

I hope the medication, however you procure it, proves helpful for you.

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