Struggling to eat with pancreatic cancer: How do you manage?

Posted by lisarlee @lisarlee, Thu, Feb 6 4:37pm

I am really struggling to eat anything. I take creon 24000 unt with everything that I eat but constantly have stomach pain and diarrhea. What are you guys managing to eat to keep your strength up?

Lisa, I'm really glad you started this new discussion specifically about eating and pancreatic cancer. I'm tagging several other members like @luckyone4321 @marvinjsturing @kimber361 @treadmillann @susandc and @beachgirl23 who may have experiences to share about taking pancreatic enzymes and managing digestive issues and keeping one's strength up.

I found this site from Pancreatic Cancer UK to be clear and informative, specifically these pages:
– Overview of diet and pancreatic cancer https://www.pancreaticcancer.org.uk/information-and-support/diet-and-pancreatic-cancer/overview-of-diet-and-pancreatic-cancer/
– Questions to ask about diet and pancreatic cancer https://www.pancreaticcancer.org.uk/information-and-support/diet-and-pancreatic-cancer/questions-to-ask-about-diet-and-pancreatic-cancer/

@lisarlee, have you had a consult with a dietitian?

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It's been 5 1/2 years since I had my Whipple. I started by taking 1 Creon with breakfast, 2 Creon with the other meals, and 1 with snacks. I now take 2 with every meal and 1 or 2 with snacks. I was a Type II diabetic for 5 years before my Whipple. I had my diabetes under control through metformin, exercise and by watching what I ate. I think being on a diabetic diet helped because I don't remember having a lot of problems after my Whipple. I am now a Type I diabettic. Between diabetes and kidney failure, I have to be careful with what I eat. I usually eat 3 meals and a bedtime snack.

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it's been almost 2 years since my whipple, and am still trying to figure it out. If the snack has no fats at all i.e. an apple, i will not take a creon. Otherwise with all meals i take a minimum of 2 creons, and if there is any fat in it, i increase to 3 or even 4 creons. I also take probiotics twice a day – the doctors think it's a good idea. The other thing i eat is either fresh papaya or papaya enzymes -= these help with digestion and to curb nauseau. It takes a long time to figure all of this out, but you can do it!

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@dianamiracle

it's been almost 2 years since my whipple, and am still trying to figure it out. If the snack has no fats at all i.e. an apple, i will not take a creon. Otherwise with all meals i take a minimum of 2 creons, and if there is any fat in it, i increase to 3 or even 4 creons. I also take probiotics twice a day – the doctors think it's a good idea. The other thing i eat is either fresh papaya or papaya enzymes -= these help with digestion and to curb nauseau. It takes a long time to figure all of this out, but you can do it!

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I see a lot of people who talk about needing Creon when they eat fats. Undigested fats cause problems with diarrhea, but Creon has 3 different kinds of enzymes – one to digest fats, one to digest carbohydrates and one to digest proteins. So if you eat fats, carbs or protein you need to take Creon

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@marvinjsturing

I see a lot of people who talk about needing Creon when they eat fats. Undigested fats cause problems with diarrhea, but Creon has 3 different kinds of enzymes – one to digest fats, one to digest carbohydrates and one to digest proteins. So if you eat fats, carbs or protein you need to take Creon

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Take creon everytime I est. Switched to totally fat free 2 days ago and doing so much better.

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What do you do when the Creon makes diarrhea worse? My wife had Appleby procedure in February and surgery was successful, all pathology negative. Eating has been a nightmare. Under advice of surgical team she was using Creon and developed chronic diarrhea. They advised increasing the Creon, she was taking as many as 8 for a small meal and the diarrhea persisted. She stopped taking the Creon and surgeon allowed her to take Imodium which made the diarrhea intermittent. If she eats sensibly, she can even manage to gain a pound but the diarrhea always comes back. She refuses to go back on Creon fearing losing another 20% of her body weight Wich would be fatal. I believe that she's allergic to the Creon since she's never eaten pork products. Anything else that works?

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@beachdog

What do you do when the Creon makes diarrhea worse? My wife had Appleby procedure in February and surgery was successful, all pathology negative. Eating has been a nightmare. Under advice of surgical team she was using Creon and developed chronic diarrhea. They advised increasing the Creon, she was taking as many as 8 for a small meal and the diarrhea persisted. She stopped taking the Creon and surgeon allowed her to take Imodium which made the diarrhea intermittent. If she eats sensibly, she can even manage to gain a pound but the diarrhea always comes back. She refuses to go back on Creon fearing losing another 20% of her body weight Wich would be fatal. I believe that she's allergic to the Creon since she's never eaten pork products. Anything else that works?

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@beachdog I have not tried anything but Creon, but GoodRX has a list of drugs for pancreatic enzyme replacement therapy
https://www.goodrx.com/pancreatic-insufficiency/drugs

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