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New Diagnosis of EPI, taking Creon: Sad and scared

Posted by sqlgirl13 @sqlgirl13, Jan 29, 2023

I'm taking CREON with new diagnosis of severe EPI, sad about this and scared.

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nonnie9153 | @nonnie9153 | May 17, 2023
In reply to @kristinarice "Wow, I'm in the same boat. Diagnosis made for a sad Valentine's Day, as this is..." + (show)
@kristinarice

Wow, I'm in the same boat. Diagnosis made for a sad Valentine's Day, as this is added to my 15 years of lymphocytic microscopic colitis. Enough already!

Happy that my new gastro doc identified this, but scared as hell.

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I wish I could get my gastro to diagnose ANYTHING.
Be grateful you know what you are battling and you can create a Plan with the help of a caring new provider.
God Bless you

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judithclark | @judithclark | May 18, 2023

I was diagnosed with EPI 3 yrs ago with a fecal elastase test of 72. This is considered severe. I also had a 24hour test which was severe as well. I have used Creon and now ZenPep with very little results. If I don’t take it, my gums bleed. My dentist confirms that I have excellent gums. I always have streatorrhea. The enzymes don’t help. My CT scans with iodine drink and contrast shows a great pancreas. So my question is do I really have EPI, or is it something else. Through the years I have increased up to 9 pills per meal nothings seems to help and no doctor understands what this is all about.
In 2015 I was on a cruise ship on the Atlantic Ocean when my appendix ruptured. It took about 8 hours or so to get help my an airlift to the Azores for 5 hours of surgery. I also got sepsis. I have since had 5 surgeries to correct damage and trauma to my abdominal area. I have an appt next week at the University of Utah for more info on this and other issues. I am on ZenPep now but am not refilling due to pricing and not enough help from it. I have tried OTA enzymes from Amazon which didn’t help either.

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anniegk | @anniegk | May 18, 2023
In reply to @gardenlady1116 "I have been getting for a $35 monthly copay. I have a Medicare part D plan..." + (show)
@gardenlady1116

I have been getting for a $35 monthly copay. I have a Medicare part D plan with Wellcare. I am not sure how this works, but it is being covered by my Medicare part D plan.

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What State do you live in?

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gardenlady1116 | @gardenlady1116 | May 18, 2023

New York. There is a Medicare coverage limit, I am not sure what will happen when I exceed the limit and fall into the Medicare Part D "donut hole"

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1 reply
cherawgirl | @cherawgirl | Aug 21, 2023
In reply to @bidelmst "Hi, to make a long story short, my wife had a Pancreatectomy, and was left with..." + (show)
@bidelmst

Hi, to make a long story short, my wife had a Pancreatectomy, and was left with 25% of her pancreas, back in 2011. We could not afford the Creon, she got some samples but not enough.
For a period of time we toughed it out. A few years later, her gastro dr told her about an alternative. It has been on the market for a few years and still not very many people know about it. It's a practitioners exclusive made by Metagenics, called SpectraZyme PAN 9x.

There is also a second with 2x the lipase, call Pan 9x ES
Since this is my first posting, I am not allowed to put their site up, so just do a search for Spectrazme with either the Pan 9x or Pan 9x ES and that will get you there.
As subscribers' through her dr, we received a discount. Way more inexpensive than Creon and has the same functional ingredients. To any and all who read this, go to the site, check it out. If anyone here is currently taking it, let me know. We finally were approved for Croen this year, through MyAbbvie (the direct manufacturer), so we have 2 bottles sealed of the ES (90 count each) we do not want to toss or give away to a corporation. Pix of our bottles is attached. I have had them posted online for less than half of the discounted price. So I found this site. In hopes of finding others who need it.

Questions, just inquire.

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Thank you for this tip of Metagenic enzymes. I have used other of their products and they are good. I have order the ES version as mentioned above and plan on using them to supplement my EPI treatment of Zenpep.

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1 reply
rozy288 | @rozy288 | Aug 22, 2023
In reply to @cherawgirl "Thank you for this tip of Metagenic enzymes. I have used other of their products and..." + (show)
@cherawgirl

Thank you for this tip of Metagenic enzymes. I have used other of their products and they are good. I have order the ES version as mentioned above and plan on using them to supplement my EPI treatment of Zenpep.

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Metagenics had a lot of fillers in them . I think you can try Vitatree , a FM Dr I follow on Instagram recommends those as they have no fillers . Google it .
I have everything wrong w/ me digestive wise .
I’ve tried it all … 10 years… still chronic and horrendous.

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susanh824 | @susanh824 | Aug 22, 2023
In reply to @gardenlady1116 "New York. There is a Medicare coverage limit, I am not sure what will happen when..." + (show)
@gardenlady1116

New York. There is a Medicare coverage limit, I am not sure what will happen when I exceed the limit and fall into the Medicare Part D "donut hole"

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Depending upon your income, you can apply for Creon Assistance through Abbvie, the drug manufacturer. Go out to Abbvie’s website for more information.

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rozy288 | @rozy288 | Aug 22, 2023

Yes if you go to the website for Creon they have a free savings card to give to your pharmacy. It’s very cheap that way . Unfortunately it didn’t work for me ( the drug ).

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