Exocrine pancreatic insufficiency (EPI)

Posted by jewill @jewill, Dec 6, 2016

I was dignosed with e p i. Exocrine pancreatic insuffency in 2015 after having a severe reaction to premarin estergen cream then 2 weeks later i had an even more sever reaction to an infusion of reclast it is a biphosphonates l am severly allergic to phosphates,dr did not check for that.i had diarrhea lost 20 lbs destroyed 90 % of my pancreas dr gave me creon 3600 2 with each meal low fat diet that is all the information i got from him did research on web for diet and supplments .need a dr in austin tx that knows more about e p i would apprecate any info on this thank you jewill

Diagnosed with Lymphoma B in February, 2017 – I jaundiced out in the hospital with a BILI @ about 17.5 – Med team inserted bile stents in my pancreas and liver ducts and the blood numbers are now normal – I have many of the symptoms and diarrhea and mix of loose stools along with weight loss lead he pack – I have just started a regimen of Creon 36,000 X 7 a couple days ago and also taking Imodium and Lomotil for the diarrhea . . . any suggestion if these should be taken together or should the Imodium/Lomotil combo be dropped and let the Creon attempt to do its job. Also next will be chemo session 4, R-Chop – someone please advise – have any idea how long before the meds show any appreciable improvement/kick in ? /hh

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@huntsvillehank

Diagnosed with Lymphoma B in February, 2017 – I jaundiced out in the hospital with a BILI @ about 17.5 – Med team inserted bile stents in my pancreas and liver ducts and the blood numbers are now normal – I have many of the symptoms and diarrhea and mix of loose stools along with weight loss lead he pack – I have just started a regimen of Creon 36,000 X 7 a couple days ago and also taking Imodium and Lomotil for the diarrhea . . . any suggestion if these should be taken together or should the Imodium/Lomotil combo be dropped and let the Creon attempt to do its job. Also next will be chemo session 4, R-Chop – someone please advise – have any idea how long before the meds show any appreciable improvement/kick in ? /hh

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Hello Hank. I had a distal (tail section removed) panreatectomy in 2014 and while I experienced EPI prior to the surgery, it became worse after that. I also take Creon 36000 x 9, but have been taking it so long that I really do not remember how long before I noticed better digestion of nutrients. I do not believe it takes weeks, but more like a few days. Much will depend on how inflamed your pancreas is now; if that is minimal, then you should feel a difference sooner than if it is inflamed when you start the regimen. The enzymes, as I am sure you know, are used for the purpose of helping your pancreas in digestion, but also to give it a rest as it will not be attempting to produce those enzymes you are taking by mouth. Because of opiate pain treatment, I have never dealt with the diarrhea as my problem has always been he opposite. I realize we are dealing with opposite issues, but I take two different meds and, at times, two different over the counter products to try and achieve some level of regularity. I am sorry you are having such a difficult time and will certainly say a prayer for your treatment and recovery. I can’t imagine having to live with the symptoms I have and adding chemo on top of that so good on you and Godspeed to wellness.

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@huntsvillehank

Diagnosed with Lymphoma B in February, 2017 – I jaundiced out in the hospital with a BILI @ about 17.5 – Med team inserted bile stents in my pancreas and liver ducts and the blood numbers are now normal – I have many of the symptoms and diarrhea and mix of loose stools along with weight loss lead he pack – I have just started a regimen of Creon 36,000 X 7 a couple days ago and also taking Imodium and Lomotil for the diarrhea . . . any suggestion if these should be taken together or should the Imodium/Lomotil combo be dropped and let the Creon attempt to do its job. Also next will be chemo session 4, R-Chop – someone please advise – have any idea how long before the meds show any appreciable improvement/kick in ? /hh

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@gman007 – t/HANK/s for the feedback . . . I just got off Creon today . . . . the sides knocked me for a loop and Dr. Stomach moved me over to Prtyze starting tomorrow . . . the protein in my high carb high protein including the shakes etc. to gain weight have my weight on hold and can’t move up the scale . . . the EPI just hit me over night and has been a struggle just like yours is . . . I appreciate the prayers and welcome them as a Believer . . . sending prayers out your way from my wife and I . . . some good news today though – Dr. Cancer believes the tumor is shrinking at a rapid rate and will do the PET in about 3 weeks. Downside is that I had to jump on antibiotics today because my white blood count dropped out of the acceptable range and that’s the blood function that helps fight infection . . . . stay in touch @gman and God Bless you and yours /h

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We are so glad to have you here on Connect, @huntsvillehank; and a huge thank you to @gman007 for jumping in with some valuable insight. I hope @jewill @bink @rickzaner, @codelue, @inhiscare2 will also join the conversation to share their experiences with Creon.
Here’s some information from Mayo Clinic: http://mayocl.in/2nXx8gL

I would sincerely encourage you to view these discussions in the Cancer group too, as there are a number of Connect members talking about lymphoma; please feel free to read through them, and tag members:

Non Hodgkin’s lymphoma: http://mayocl.in/2oGHEGm
Lymphoma in remission: http://mayocl.in/2oCd5Rv

@huntsvillehank, what antibiotics do you have to take?

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@kanaazpereira

We are so glad to have you here on Connect, @huntsvillehank; and a huge thank you to @gman007 for jumping in with some valuable insight. I hope @jewill @bink @rickzaner, @codelue, @inhiscare2 will also join the conversation to share their experiences with Creon.
Here’s some information from Mayo Clinic: http://mayocl.in/2nXx8gL

I would sincerely encourage you to view these discussions in the Cancer group too, as there are a number of Connect members talking about lymphoma; please feel free to read through them, and tag members:

Non Hodgkin’s lymphoma: http://mayocl.in/2oGHEGm
Lymphoma in remission: http://mayocl.in/2oCd5Rv

@huntsvillehank, what antibiotics do you have to take?

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@kanaazpereira – started on Levofloxacin – kept me up for the last 12 hours and I feel I’ve had many reactions from it last night – short of breath, throbing ears, rapid heart beat etc. – called the doc and waiting for a reply

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@huntsvillehank

Diagnosed with Lymphoma B in February, 2017 – I jaundiced out in the hospital with a BILI @ about 17.5 – Med team inserted bile stents in my pancreas and liver ducts and the blood numbers are now normal – I have many of the symptoms and diarrhea and mix of loose stools along with weight loss lead he pack – I have just started a regimen of Creon 36,000 X 7 a couple days ago and also taking Imodium and Lomotil for the diarrhea . . . any suggestion if these should be taken together or should the Imodium/Lomotil combo be dropped and let the Creon attempt to do its job. Also next will be chemo session 4, R-Chop – someone please advise – have any idea how long before the meds show any appreciable improvement/kick in ? /hh

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I hope the new enzyme works much better and with minimal side effects. Thank God that the tumor is shrinking and I pray it appears even smaller or gone on your PET. Do you buy the premixed shakes or make them yourself. I use whey powder to mix my own and I have to avoid the carbs because part of my EPI is related to insulin production and mix mine with milk and ice and usually some veggies and fruit thrown in the blender. If you need the carbs, you could find a flavor that will mix well with a fruit juice and get even more nutrient rich calories into your body. I am probably telling you many things you already know, but just in case. Thank yo and your wife’s prayers – I have been chronically ill for a little over 11 years and between my church, my Mom’s, my Mother-in-Laws, and just friends, I would guess I have had hundreds of thousands lifted on my behalf. While I have not experienced a cure, I am supported by the knowledge that so many people are regularly thinking of me and lifting my needs above. Take care and keep us informed.

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@huntsvillehank, please let us know what you find out after speaking to your doctor.

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@kanaazpereira

@huntsvillehank, please let us know what you find out after speaking to your doctor.

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@kanaazpereira doc admitted me to the hospital last night and are doing the antibiotics by IV in addition to a few other maintenance things – hoping to get out in a day or two 🙂

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Hope the AB’s work faster this way and you will be out and about soon! Again, please keep us up to date when able.

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@kanaazpereira @gman007 Discharged yesterday and have my blood numbers under control for now with white count rising to about 5800 yesterday taking me out of the danger zone . . . the IV antibiotics certainly much different than orals . . . looked at the hospital operation vs. one pill at home and said no comparison . . . meet with my oncologist on Monday for continuing updates and a chemo session on Monday May 1st . . . consented to a colonoscopy next week to try and find the root cause of weight loss and am considering another opinion at Mayo in Waycross for an overall re-evaluation

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Great to hear that your WBC responded so quickly. Will definitely say a prayer for your meeting and and chemo treatment. I hope you can have a peaceful weekend with little anxiety about Monday and what lies ahead.

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@gman007

Great to hear that your WBC responded so quickly. Will definitely say a prayer for your meeting and and chemo treatment. I hope you can have a peaceful weekend with little anxiety about Monday and what lies ahead.

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thanks @gman007 / appreciate the concern / not to overanious about the meeting because that is turning into a weekly thing for blood measurements / the big day will come a week after chemo 4 when we do a PET scan to measure the achieved results for the first time / the other issue is ongoing and its the diarrhea not being under control / its figuratively sucking the life out of me / down about 35 pounds since January / ughhhh and not sure where we’re going with it / maybe next week after the colonoscopy we’ll have a positive correction plan / praying and hoping

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I sure hope so! I think it figuratively and literally sucking the life out of you. I could certainly use the weight loss, but don’t want to achieve it that way. I am sure it has also sapped your strength, which makes everything else more difficult. Just know that we are all thinking and praying for you and I hope that provides the smallest comfort. If you are not back on here before, please let us know about your PET scan. Gary

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I hope you find some answers. Very difficult sometimes to get answers. Hope you feel better soon

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@jewill

I was diagnosed with endocrine pancreatic insufficiency EPI after having a reaction to estrogen cream and 2weeks later a reaction to reclast infusion a BISPHOSPHONATE.dr didn’t check my chart for allergy to phosphates nor tell me to have any invasive dental work done first .i had diarrhea for over 200 days lost from 130 to 103 lbs .my teeth have started to break off i have a lot of muscle loss i went from dr to dr none knew what i had finally a dr ran fecal test and started me on creon and told to go on a low fat diet.i did research diet ,timing for creon and food ,supplements,exercise.i put my food in blender to get more food in me it is hard to chew.i have done organic for 40 years .I would like to find a Dr in austin tx that knows more about EPI .supplements ,creon and organic food and keeping stress down works I still work but i am 78 so i wont be able to do that much longer. I would love to hear from any one with any informed on EPI or malabsorption.

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Hi did you ever find a dr in Austin.

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