EPI: Don't Keep a Lid on It

Author: TheBalancingAct

The pancreas. It's not an organ we think about every single day. But a healthy pancreas makes enzymes helping digest food into usable nutrients. For some, the pancreas fails to produce enough enzymes, resulting in an undigested food.

And inadequate nutrients for optimal health. The condition is called, epi. One too often under recognized and under diagnosed. Welcome to the second part of our three part series on rare and genetic diseases. Our focus this morning is exocrine pancreatic insufficiency or epi. We're going to talk with doctor bob etemad, a gastroenterologist from lankenau medical center in wynnewood pennsylvania.

And a little bit later in our segment, we are going to meet with an epi patient. Here to show her very personal story and insight on epi. Welcome back, doctor. Thank you very much. Thanks so much for being here again.

I've got to tell you. I learned a lot about epi the last time you were here. Let's refresh the memory here in terms of the epi and why it's so often under diagnosed. So, exocrine pancreatic insufficiency or epi is difficult to diagnose because so many of the symptoms over lap other very common things. So, for example, diarrhea, well some people have loose stools here and there. And they know to ignore it. Or some people might have a gas after an unusual meal and they might then let it go. But it's this combination of symptoms associated with more serious symptoms that we worry about more.

EPI: Don't Keep a Lid on It

And we do know how important the pancreas is in our body. Can you talk to me about why pancreatic enzymes are so important? yes. So, the pancreas helps you digest food. Correct. I mean we chew our food and that helps at one level.

But once the food is broken down to actually extract the nutrients, we need special proteins, ezymes from our body to be able to extract those nutrients and incorporate it into us. And if the pancreas doesn't make those. There's no other organ that can do it. Now, we know that weight lose is something that people are always trying to achieve. But when it comes to patients suffering from epi, that really is a unintended consequence that they suffer through. That's absolutely correct. The issue is then again, the nutrients are not getting to their system.

And your body is still turning over proteins and when you don't have anything to replace it, you begin to lose body mass. Protein, fat, really any part of your body. It can be very dangerous in the long run. But there are things today, that doctors are doing that are helping patients suffering from epi, correct? absolutely. Of course the first step, is making the diagnoses.

Yes. And that's very critical. But fortunately, we do have replacement enzyme therapy. To help us to accommodate for patients that don't make it on their own. And on that note doctor, i'm going to ask you to hold off right there. Yes. Because we are going to talk about that right now, when we come back.

And also, we are going to learn more about epi as we get an up close and personal account with a very special patient suffering from epi. Her story, just ahead. Stay with us.

(music) (music) welcome back everyone. We've been talking today with doctor bob etemad. A gastroenterologist from lankenau medical center in pennsylvania. And joining us now, rhonda ayala, an epi patient who's been dealing with her condition since 2010.

Welcome back. Hi. Thank you for having me back.

Thank you for being here because again, a great segment where you are providing so much valuable information. I know we talked about a little bit in the past, rhonda. But tell me again, your condition, what symptoms were you facing, what was happening? i was having cramping, bloating, diarrhea. You know, something out of the ordinary and i knew something was up.

So, you kind of knew. This isn't me. I'm not doing well. This is not good. Ok. Doctor, someone like rhonda.

She goes to her doctor. She gets diagnosed with epi. Then what happens? usually the doctor will look at enzyme replacement therapy to replace what her body is not making. Ok. And those enzyme replacement therapies are what? they are actually capsules.

They are capsules that have small little tiny bits of pancreas enzyme inside them. Really? what are they called? pancreatic enzyme replacement therapy. So perts? perts, that's right. Are you on these? i sure am. You are? ok. So, tell me how that works.

Well, i have to take them with meals. And that's the hardest part in the beginning is remembering to take them with the meals. You have to remember to keep them with you. You know so they are always with you every time you eat.

And did that help manage your symptoms? did they go away? did they come back? they were manageable. They were manageable and then they came back a little bit. But what i did was, i have great open communication with my doctor. So, i went right back to him and told him, hey something is going on again. And you know he changed things up and now they are totally manageable. And doctor, that's really key here.

To really have that open line of communication with the doctor. Because this is really something that will last forever. It really will. I would say that both points.

It is important that she felt comfortable speaking to the doctor about these symptoms because they are sometimes private for some people. And it's important to feel that openness. And it is a condition that probably would stay with the patient for most of the causes of exocrine pancreatic insufficiency for a large part of their life. And rhonda, was it hard to incorporate these enzymes into your life? that you kind of had to remember.

It was easy to remember because when you don't take them with meals, you know, i didn't feel good again. So, you know all you need is that one little ouch to remember, so, i'm doing it pretty regularly now. And doctor, from what i'm hearing from our last segment together and this one, is again, rare to hear about this. But once diagnosed, you really can manage the symptoms. Once it is diagnosed. It really can be appropriately managed with the care of a physician who is familiar with it and a patient who is going to be cooperative with their therapy. Rhonda, for someone out there that might be suffering from epi or maybe doesn't know what they have. And maybe they are in the same boat you were a few years ago.

What would you tell them? i would tell them not to self diagnose and it's not something you ate. Be open with your doctor. You have to tell them every thing. So, they will through out what's garbage and they'll figure out what's going on with you if you are honest. Great advice. Doctor, for patients out there and for people out there that may want to learn more about epi, is there a website they can go to? there a number, but i think a good place to start would be identifyepi.com it's a good general resource.

And from there, i'm sure they can find other information as well. Identifyepi.com that's correct. Thank you so much for your time. Thank you very much. Great information. Thank you. Thank you. Good luck.

And of course this has been our second series on epi. Be sure to join us again for another behind the mystery rare and genetic diseases. As we examine now the relationship between and cystic fibrosis. So, stay tuned for that. In the meantime, visit us at balancingact.com to find out more or share with us anything regarding epi on facebook/thebalancingactfans.

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