Pancrelipase and Diarrhea: What Users Say

• Wil...
• Taken for 6 months to 1 year
• July 27, 2020

For Pancreatic Exocrine Dysfunction "After Whipple surgery, my GI doc and my oncologist both recommended that I take 75,000 IU of Creon per major meal and 25,000 per snack. It works to control diarrhea, though it's very expensive. But, if I take it with the meal, it causes gas bloating. So, now I'm experimenting with taking it before meals, 30-60 minutes, which seems to work, except that I always have to know exactly when I'll eat next, so I can take pills at the right time in advance. Does anyone else have this bloating problem and if so, how do you deal with it?"

• Anonymous
• Taken for less than 1 month
• January 19, 2020

For Chronic Pancreatitis "First, this drug is EXPENSIVE. My regular insurance denied paying for it 3 times. I had to have my doctor fight with them on the phone, saying this is the ONLY current viable drug for Pancreatic insufficiency. They still complained. My stomach was in very bad pain, loose stool, and extreme bloating. After ONE day of use (5 pills of 12000 units), my bloating reduced by 50%. The frequency of loose stool is down to only once a day vs 3-4 times a day pre-Creon. The pain is beginning to improve. HOWEVER, this drug has given me one of the RARE side effects listed in warnings, 'HIVES'. My back won't stop itching. UGHH. So now I have to decide between abdominal pain all day or having itching all day. I have to ask the doctor for anti-itch pills now. ANYONE ELSE GET ITCHING?"

• tac...
• Taken for 1 to 6 months
• June 5, 2019

For Pancreatic Exocrine Dysfunction "This medication did absolutely nothing to resolve my EPI disorder (exocrine pancreatic insufficiency), even with a recommended increase in dosage. I continued to have frequent explosive diarrhea problems. I have had many medical problems during my 76 years of life and recovered, but EPI is the worst medical problem I have ever had. It will not go away."

• Fed...
• Taken for less than 1 month
• March 7, 2019

For Chronic Pancreatitis "After a gastric bypass 4 yrs ago, then followed by gall bladder removal, I was left with chronic unpredictable diarrhea, pain, bloating, and nausea. Recent tests showed I had EPI (Exocrine pancreatic insufficiency) and my pancreas was not producing enough, if any, enzymes. A week ago, I was prescribed Creon 10000 by the hospital. I feel so ill taking them. The pain and bloating have gone, but I am still getting diarrhea, bad nausea, a vile taste in my mouth that taints everything I eat/drink, and awful headaches. I take 2 capsules with a meal twice a day, then 1 with any snacks. I cannot eat normal meals due to the gastric bypass, so I tend to graze throughout the day every 2/3 hours. Is this normal, and will the symptoms go eventually, or will it always be like this? I am truly sick and tired of it all."

• lg0...
• Taken for 1 to 6 months
• May 13, 2023

For Pancreatic Exocrine Dysfunction "I was told to take this as lipase was not enough (was discovered through diarrhea/loose stool, greasy). This has made me feel worse! Abdominal cramps, sometimes bad, and inability to empty bowels enough to safely leave the house for 3 hours. Huge all-over body bloat. I quit it, and in 2 days a friend asked me if I had lost weight, even my face looked slimmer, and I thought, bam! Water retention, oh! The pain from this is not worth it. Are the others on here mentioning anxiety? Yes!! So bizarre this could cause it, but I've had some pretty bad days, had to even take Benzo, no reason why... but perhaps this! What a shame. So many bad reviews here, what can help us??"

• lg0...
• Taken for 1 to 6 months
• May 13, 2023

For Pancreatic Exocrine Dysfunction "I was told to take this as lipase was not enough (was discovered through diarrhea/loose stool, greasy). This has made me feel worse! Abdominal cramps, sometimes bad, and inability to empty bowels enough to safely leave the house for 3 hours. Huge all-over body bloat. I quit it, and in 2 days a friend asked me if I had lost weight, even my face looked slimmer, and I thought, bam! Water retention, oh! The pain from this is not worth it. Are the others on here mentioning anxiety? Yes!! So bizarre this could cause it, but I've had some pretty bad days, had to even take Benzo, no reason why... but perhaps this! What a shame. So many bad reviews here, what can help us??"

• J R...
• Taken for 1 to 6 months
• July 23, 2020

For Pancreatic Exocrine Dysfunction "I was diagnosed with Exocrine Pancreatic Insufficiency (EPI) after about 3 months of diarrhea. At first, the Creon didn't do anything, but eventually, the diarrhea slowed and stomach pain decreased. Watching my diet to avoid fatty foods as best I can has also helped. Still have completely loose stool, but not as often as before. I have developed a cough and sore throat, along with a raspiness in my voice that continues to get worse. (Not good for a singer). I have found no remedies for that and have not been advised of any help. I don't know what I'll do if the pain continues to increase. I can live without singing (not a professional), but the throat pain is really getting bad."

• Gri...
• April 3, 2021

For Pancreatic Exocrine Dysfunction "I am 56 years old with pancreatic cancer. After 3 days of taking Creon, I thought I was going to die. Except for diarrhea, I experienced every side effect on the list. Excruciating abdominal pain, constipation, bloating, headache, etc. On a scale of 10, my pain was at 10. My husband, who is a nurse, was puzzled, and I realized that the only thing I had changed was that medication. I stopped taking it immediately, and it took me a week to recover. Not blaming anybody, but if it happens to you, stop taking it immediately and talk to your doctor."

• Sue...
• Taken for 1 to 2 years
• May 22, 2017

For Pancreatic Exocrine Dysfunction "I was diagnosed 2 years ago with stage 4 pancreatic cancer. I have had chemo and radiation, and I am doing very well. When first diagnosed, I was on Creon. I had no side effects, but wanted something a little less expensive, so my oncologist suggested I try Zenpep. It works great, as long as I don't forget and skip a dose. When I skip a dose, all my symptoms come roaring back: gas, pain, cramps, and loose bowels."

• cra...
• Taken for 1 to 2 years
• February 29, 2020

For Pancreatic Exocrine Dysfunction "I take Creon 25000 (2 with meals, 1 with snacks) because I take Somatulin for NET tumors, and it upsets pancreatic function. Originally wasn't impressed, so after 4 months, with my doctor's OK, I suspended it... but the symptoms came back in spades. I'm now more religious about dosage and timing and find it helps immensely (back on it 8 months). Helps with gas, bloating, diarrhea, greasy stools, smell. Not always totally effective, but I haven't restricted what I eat or drink and suppose if I were better at that, I'd have more success. Good luck to others!"

• Nan...
• Taken for 1 to 6 months
• February 6, 2023

For Pancreatic Exocrine Dysfunction "I was experiencing diarrhea 6 or 7 times a day, had cramps, and a rock-hard stomach and bowels. I had sleeve surgery 8 years ago, and my gallbladder was removed about 30 years ago. I was prescribed Zenpep one month ago and feel like a new person. Bloating, stomach pain, and diarrhea are gone as long as I take it with every meal. If I eat without taking it, the symptoms return. I am glad I have good insurance, as this medication costs $1,500 monthly, and I pay $30 for 2 months. It really does work well for me."

• Dik...
• Taken for 2 to 5 years
• February 20, 2018

For Pancreatic Exocrine Dysfunction "Creon is great for my exocrine pancreatic insufficiency (EPI), taken almost three years. Without Creon, I have explosive diarrhea. But my dosage is tiny compared to many, one 3,000 lipase capsule with all meals or snacks."

• Edw...
• Taken for 2 to 5 years
• June 15, 2023

For Pancreatic Exocrine Dysfunction "I've been on Creon 3 x 36,000 lipase units every meal for three years without any issues until recently. About 5 months ago, I started having explosive diarrhea, up to 6 times a day. I stopped taking it for a few weeks and got better. I started back slowly with 1 x 36,000 lipase units, and over the course of 2 weeks, I increased back to 3 pills with meals. Everything was fine for about 3 weeks, now my diarrhea is back. Yesterday, I scheduled an appointment with my doctor, and I am going to stop again."

• mot...
• Taken for 6 months to 1 year
• June 5, 2019

For Pancreatic Exocrine Dysfunction "Whether it was the medicine or not, I had abdominal pain after taking Creon for 2 months. I cut the dosage back, had more tests run on my abdomen, which showed nothing. I have been taking a dosing capsule of 24,000 units with each meal since February and have had no side effects. No more runny stools or frequent trips to the restroom. I have an appointment and lab work later this month."

• Lor...
• Taken for 2 to 5 years
• June 29, 2020

For Pancreatic Exocrine Dysfunction "I have been persevering with Creon on and off for three years now after Whipple's surgery. Every time I started it back on, my diarrhea was actually worse. This medication did absolutely nothing to help, even with increasing the dosage. I continued to have frequent explosive diarrhea problems. I am told to keep taking it and worry that by not taking it, it will do more harm."

• Lor...
• Taken for 2 to 5 years
• June 29, 2020

For Pancreatic Exocrine Dysfunction "I have been persevering with Creon on and off for three years now after Whipple's surgery. Every time I started it back on, my diarrhea was actually worse. This medication did absolutely nothing to help, even with increasing the dosage. I continued to have frequent explosive diarrhea problems. I am told to keep taking it and worry that by not taking it, it will do more harm."

• Chr...
• Taken for 1 to 6 months
• October 24, 2021

For Pancreatic Exocrine Dysfunction "I was diagnosed with inoperable Stage 4 pancreatic cancer. They started me on 12,000 mg Creon, did nothing but make me feel worse. Then the oncologist upped the dosage to 36,000 mg, 2 with meals, 1 with a snack. Still explosive diarrhea, and I had already lost 30 lbs. Then the oncologist tripled my dosage, and I spent 8 hours on the toilet every day (no exaggeration). I stopped taking it, and I’m actually doing better. It’s not worth the sacrifice of my quality of life. Never will I take it again."

• Bee...
• Taken for 1 to 2 years
• July 19, 2021

For Pancreatic Exocrine Dysfunction "I’ve been using Creon on and off for two years, and right now I’m up to three 24,000 capsules before each meal, but I still have horrible, horrible, horrible cramps and diarrhea. I’m going to my third gastroenterologist tomorrow, and hopefully, he will have some answers! This is no way to live."

• 422...
• Taken for less than 1 month
• November 19, 2021

For Pancreatic Exocrine Dysfunction "I had Whipple surgery 8 months ago. I was doing fairly well and then started having bouts of diarrhea. Diagnosed with exocrine pancreatic insufficiency (EPI). Just started Creon. Stool is loose but not diarrhea. I am lethargic after taking for a couple of days. Anyone else experience lethargy? I'll update as I proceed with using."

• DDi...
• September 25, 2016

For Chronic Pancreatitis "Advised to take capsules 20 minutes before food. Is this common? Had 5 bouts of severe vomiting & diarrhea in the last 10 weeks. 9 months on Creon. Any advice?"