Exocrine Pancreatic Insufficiency (EPI)

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Diane C
Posts: 1006
Joined: 2005-10-02 08:30:29

Exocrine Pancreatic Insufficiency (EPI)

Post by Diane C »

Hi all,

Has anyone, other than those who have diabetes, had an ostomy and then was diagnosed with pancreatic problems? I'm not sure which came first but ever since my colostomy was switched to an ileostomy in 2018, I became very aware of oily, greenish "effluent" which can badly stain clothes and bedding if there's a leak. I didn't seem to have this issue when I had a colostomy as more absorption of food took place then. About 2 months ago, my GI doctor did a stool study because of my output and distention. I'm pretty sure I also have SIBO or small intestinal bowel overgrowth. Anyway, the doctor found that my pancreas is not absorbing fats. So, I'm now on an enzyme to help digest fats called Zenpep. There are many others and one must take these enzymes which are lacking in my pancreas before eating food -- especially if it contains fat.

I did a search of this discussion board and only found one person who mentioned EPI (and I don't mean the epi pen). She hasn't posted since 2017.

I admit I'm getting a bit overwhelmed by the number of GI problems I seem to have or inherited. I am hydrating quite a lot now although I STILL must increase my exercise which I used to love. At times, I get diarrhea and a generic of Imodium does help -- as good as the Imodium tablets. I've bought them at Amazon but am trying to rely less on Amazon. Does anyone take any generic of Imodium that (s)he especially likes?

My Gi doctor had suggested use of a medication to help with diarrhea called Motofen. It is VERY costly so I said no -- and we decided to see how Zenpep would affect the pancreas and EPI issue only. It works well but I'm surprised to find that now I have a pancreatic disorder.

I wasn't eating so well with all this and became a bit anemic but increased spinach, buffalo burgers (I usually don't eat beef), and was very consistent with Vitron-C, my iron supplement which works wonders. But I'm tired and can fall asleep too easily. Exercise might perk me up.

A while back, fluid was found near my lungs but the cause was never determined. Nothing "bad" was found in the fluid and once my body even absorbed it. But due to the fatigue and a family history of some heart disease, I'm getting an echocardiogram and stress test next week. Sure hope the results are fine because I'm getting tired of all these diagnoses although none is dire.

Ha, today I turn 69 -- and yes, I feel it! It could be the atmosphere and continuing social distancing and lack of swing dancing - and dark days ahead but I'm ready for a vacation! I don't feel that old but definitely exhausted!

So, if anyone has a pancreatic disorder besides diabetes which is far more serious, I'd be curious.

Many thanks and good night!
Diane C
2000 MACE
2002 Colostomy
2018 Above + anus removed; Ileostomy
2020 Scar tissue removed
IrishLass77
Posts: 1
Joined: 2021-09-12 16:22:39

Re: Exocrine Pancreatic Insufficiency (EPI)

Post by IrishLass77 »

Hello. I know you posted this question quite awhile ago, but I didn't have an ostomy then, sooo...
I have chronic pancreatitis and epi, for which I take Creon. I also have an colostomy, and I am dealing with similar issues. That "oil" is the fastest adhesive remover I have seen yet. I have had a terrible stomache on and off for over a week, and no bag has lasted 24 hours, due to leaks. I feel like a prisoner, I am afraid to go anywhere!
User avatar
Diane C
Posts: 1006
Joined: 2005-10-02 08:30:29

Re: Exocrine Pancreatic Insufficiency (EPI)

Post by Diane C »

Hi IrishLass77,

I've meant to post WAY before this. Apologies to you and others. Sorry to hear about the epi and I hope the colostomy is helping your health.

YES, when the pancreas doesn't absorb fats the output is oily and can stain. I recently returned to my GI doctor who seemed not to care but I think was busy. Meanwhile, I saw another GI doc who claims I don't have epi but I think he's wrong.

So, I'm back to using ZenPep which is a capsule of enzymes that allow the pancreas to digest fats. I also take other enzymes and tried to reduce dairy or only consume lactose-free. My GI doc claims you can't really OD on enzymes but I TRY to take at least 2 ZenPep with every meal. I'm also trying to adhere to the FODMAP food plan to decrease gas. I was told to eat 6 small meals/day and that's a challenge.

My GI doc had also prescribed Motofen which is very expensive. Holding off on that and will research the med you take.

My output continues to flow and flow unless I'm strict about 2 Imodium 4x/day. I don't find the generic helps nearly as much as the real stuff which gets costly.

I'm going on a campaign to write to manufacturers about their high-end pouches. I dislike ALL of em and often wear irrigation sleeves. I guess Medicare doesn't know ileostomates can't irrigate. I'll use Diamonds or Pearls in them and cut them down a bit. After a while, high-output pouches lose their integrity and blow up, esp if they have filters.

Once I was going to write a book about my GI journey which I've travelled for life. Now another challenge remains SIBO. I'll do what I can and want exercise to be a much bigger part of my life. At this point, the book is off. I'm trying to be grateful and improve where I can. I recognize that nany others struggle so much more.

Sorry for my absence up here. Health issues and my mother's death in January and general busyness made 2021 challenging but I want to do more than cope.

Many thanks!

Diane C
Diane C
2000 MACE
2002 Colostomy
2018 Above + anus removed; Ileostomy
2020 Scar tissue removed
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