My EPI symptoms & getting into diagnosis
Mildred:
It took me about a year to get diagnosed with EPI correctly.
Mildred:
I started out having really bad abdominal pains and I couldn’t eat or drink anything without having to go diarrhea within about two minutes or so. And with me being a chef, it’s kind of hard for me to do that because I’m always having to go to the restroom every time I taste something different.
Mark:
It took me about 12 or 13 years to get diagnosed. I just kept having things like diarrhea, gas, stomach pain, whatever it was, it just wouldn’t go away.
Mark:
I had not shared anything with my doctor until my 40-year-old tune up. Through conversation, I realized that my bathroom habits were not normal. I didn’t realize that other people didn’t experience those pains, the trips to the bathroom.
Mildred:
During my journey with being diagnosed, they said I had Crohn’s disease, they said I had IBS. I had been put on a variety of different treatment options and nothing was seeming to help, and it got frustrating.
Mark:
When they first diagnosed my pancreatitis, they told me that about 90% of the people that had chronic pancreatitis, it came from alcohol abuse. The doctor didn’t believe when I told him what my drinking habits were. Once they determined that I was telling the truth, then they started looking at the pancreas. The same conversation, I was diagnosed with EPI. And I started CREON that day.
Mildred:
I went to my second doctor. And I knew I was going to have to ask some of the harder questions and get over the part of being embarrassed to making sure that I was getting the help I needed. I’m grateful because she really did help me a lot and she listened to what was going on. She said, I think it could be EPI and it’s very hard to diagnose because it does mimic other disorders. She prescribed me CREON and it helped manage my EPI.
Mark:
That’s why I keep saying that there’s no reason to wait if you think you might have symptoms of EPI. I found a doctor that was educated in what was going on and he nailed it. But it took finding the correct doctor that was educated specifically in this issue. If you’re not getting the help that you need, ask for another doctor. Get a second opinion, get a third opinion.
Mildred:
Persistence is so important. Especially being diagnosed with this. We had to be our own advocates because this is a fairly unknown thing.
Mark:
Once I learned what EPI was and that I had EPI, then I had to take an active role in managing my symptoms. One of the things that really helped me was to keep a journal. I couldn’t remember from one visit to the next what all had happened. It also helped me make a plan on what to do in the future. I kept track of meals. Kept track of weight loss, weight gain. Alternative plans in case one didn’t work, sleep routines.
Mildred:
That’s really good. I too do journaling. Because it’s better for us to journal and keep track of what we’re doing, how we’re doing with the medicine. And now whenever I go in to the doctor, she’ll ask me, have you had any changes with your stomach issues? Is the CREON helping you? Do we need to increase it?
Mark:
I found that we were a team. And that I just had to keep asking my doctor questions. I wrote those questions down in my journal as I thought of them in between appointments.
Mildred:
I agree that communication is the biggest part of it. It’s the heart and soul of getting you the proper treatments that you need.
Mark:
It’s important to keep talking to your doctors whether you get feeling better or not. Keep asking questions. Make sure that the answers are explained in a manner that you can understand them.
Mildred:
I couldn’t agree more.
SAFETY VOICE OVER:
USE
CREON® (pancrelipase) is a prescription medicine used to treat people who cannot digest food normally because their pancreas does not make enough enzymes.
Important Safety Information
What is the most important information I should know about CREON?
CREON may increase your chance of having a rare bowel disorder called fibrosing colonopathy. The risk of having this condition may be reduced by following the dosing instructions that your healthcare professional (HCP) gave you. Call your HCP right away if you have any unusual or severe: stomach area (abdominal) pain, bloating, trouble passing stool, nausea, vomiting, or diarrhea.
What should I tell my HCP before taking CREON?
Before taking CREON, tell your HCP about all the medicines you take and all your medical conditions, including if you are allergic to pork (pig) products; have a history of intestinal blockage or scarring or thickening of your bowel wall (fibrosing colonopathy), gout, kidney disease, or high blood uric acid (hyperuricemia); or are pregnant, plan to become pregnant, are breastfeeding, or plan to breastfeed.
How should I take CREON?
Take CREON exactly as your HCP tells you. Always take CREON with a meal or snack and enough liquid to swallow CREON completely. Do not crush or chew the CREON capsule or its contents, as this may cause irritation in your mouth or change the way CREON works in your body. Talk to your HCP or consult the CREON Medication Guide for how to take CREON if you have trouble swallowing capsules.
What are the possible side effects of CREON?
CREON may cause additional serious side effects, including:
- Increase in blood uric acid levels (hyperuricemia), including pain, stiffness, redness or swelling of your joints.
- Allergic reactions, including trouble with breathing, skin rashes, swollen lips, or itching.
Call your HCP right away if you have any of these symptoms.
The most common side effects of CREON include blood sugar increase (hyperglycemia) or decrease (hypoglycemia), pain in your stomach, frequent or abnormal bowel movements, gas, vomiting, dizziness, sore throat, and cough.
CREON and other pancreatic enzyme products are made from the pancreas of pigs, the same pigs people eat as pork. These pigs may carry viruses. Although it has never been reported, it may be possible for a person to get a viral infection from taking pancreatic enzyme products that come from pigs.
These are not all the possible side effects of CREON. For more information, ask your HCP or pharmacist.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.
If you are having difficulty paying for your medicine, AbbVie may be able to help. Visit AbbVie.com/PatientAccessSupport to learn more.
