Frustrated after 6 weeks on Creon for EPI: Pain returned. Had similar?

Posted by dkdivinek9 @dkdivinek9, Jul 18 10:45am

After years of misdiagnosis it was discovered by a new GI doctor that I have had a clogged bile duct by the time they got the surgery done I already had pancreatitis. I have followed a very strict pancreatic diet and been on Creon for epi . The crayon worked great in the beginning after 6 weeks All of a sudden I'm back to having pain in my right side and horrible bile diarrhea. All of my tests for pancreatitis came back good? I have an appointment with a pancreatic specialist but not for a couple more weeks has anybody else experienced this

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While I haven't had this exact experience, a few things come to mind. Sometimes the Creon dose needs to be adjusted over time, especially if symptoms return. It's also important that it's taken correctly—with the first bite of a meal and sometimes divided throughout larger meals.

Bile acid diarrhea is another possibility, especially after biliary problems or gallbladder surgery. Medications such as cholestyramine, colestipol, or colesevelam can be very effective if bile acid malabsorption is the cause, so it's worth asking your specialist about that.

Pain on the right side could also have causes other than pancreatitis, including ongoing bile duct issues, gallbladder or liver problems, or irritation from the pancreas itself. The fact that your pancreatitis labs are normal is reassuring, but it doesn't completely rule out pancreatic or biliary problems.

Until you see the specialist, I'd keep a log of what you eat, when you take your Creon, and when the pain or diarrhea occurs. That information can be very helpful.

I hope your pancreatic specialist is able to identify the cause quickly. Persistent pain and bile diarrhea deserve a thorough evaluation, and there are several potential explanations beyond recurrent pancreatitis. Wishing you answers and relief soon.

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Thank you for the information . It could be possibly that my Creon needs an adjustment dosage as I have been taking it correctly. I have also been diligent about my diet. I will keep a log of everything I eat and when I take my creon until I see the specialist.

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I was diagnosed with EPI after I had my gallbladder removed. I didn’t know the gallbladder and the pancreas were so close to each other. Apparently the GI I was using didn’t either. After the surgery the pain continued and GI then diagnosed the EPI after the stool elastase test. If I only knew all bases were covered before surgery I never would have had the gallbladder surgery. He hasn’t been on top of the dosage of my Creon, either. He said 2 with meals and 1 with snacks. When I asked about the dosage he told me the same thing. Despite dear doctor I have upped meals to 4 or 5 depending on what I eat. Someone recommended spacing out the dosage. Like 2 15 minutes before and 2 during. It’s a hormone! Adjust it as you find your needed comfort. I also take Cholestyramine after a rough day of loose, tarry stools or incontinence. I’m still not at a point that I feel confident in wearing normal underwear but I feel closer now that I e taken control. Best of luck.

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Yes unfortunately I have no choice but to have my gallbladder removed it was dead . Not working at all! I ended up having ercp surgery after 10 years of misdiagnosis . My bile duct was almost 2 cm and it's only supposed to be 6 of a centimeter. I ended up with pancreatitis before the new GI doctor figured out what was wrong. I'm excited to go to the new pancreatic specialist so he can help me with adjusting my dose of Creon. I hope that that is the issue. For 6 weeks everything went great after being put on creon and then I had a week of horrible constipation then excruciating pain in my pancreatic area and bile diarrhea. Thank goodness all my pancreatic tests came back great! I believe it was another episode of dumping syndrome on top of trying to get my Creon regulated. Thank you so much any input I can get this point is helpful!

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Remember CREON must be stored at room temperature. Aka between 65- 78f. Should it overheat… aka past 85f., They die when not in your gut. These are live enzymes in stasis. It is not recommended the pills be in your pocket or refrigerated.

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