Expert help with proper dosing of Zenpep enzymes after Whipple

Posted by kjc12 @kjc12, Mar 9 8:17am

My husband had Whipple surgery in Feb.,2023 and completed Chemo at the end of September. He is still struggling with determining the proper dosage of enzymes with meals/snacks. His surgeon didn’t put him on anything after surgery and his Oncologist team just keeps upping the dosage. There is a lack of knowledge, I feel on the importance of all this for his quality of life. I requested a stool test for enzyme levels and they were extremely low, so the dosage was increased. That was 3 months ago and no follow-up testing has been prescribed. Does anyone know of Specialists in this field who might better serve him. As always thanks to all for reading/responding to my posts. Feeling at a loss to help him. He seems to only have one or two good days a week since his pancreatic cancer diagnosis in Jan.,2023. The side effects from Chemo (neuropathy especially) are still plaguing him on top of digestive issues. I appreciate you ALL. God bless.

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@carfbuch

I have been told by my surgeon that I need to get a Whipple due to a Mucinous Cyst on the head of my pancreas that features some worrisome features. I am concerned about the quality of life after Whipple. Has anyone of you needed IV Feeding, problems with diarrhea, nausea and vomiting? How long did it last? I am glad this is being caught before it turns cancerous, but just want to be prepared for what to expect in recovery. Thank you for your feedback!

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I had a Whipple 5/13/22 at age 70.
Eating small amounts of food throughout the day helped. I had nausea which I later found out was due to Bile Reflux (surgeon had to relocate my bile ducts 50 cm lower in the small intestines). Eating was trial and error as to what agreed with me, but no diarrhea or vomiting. Pancreatic enzymes seem to be working well. No need for screen and haven’t become diabetic!

It did take over a year to get most of my stamina back and now nearly 2 years out I feel so much better.
*Since my cyst had not crossed over to cancer, I did not need chemo!!

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@weezi

I had a Whipple 5/13/22 at age 70.
Eating small amounts of food throughout the day helped. I had nausea which I later found out was due to Bile Reflux (surgeon had to relocate my bile ducts 50 cm lower in the small intestines). Eating was trial and error as to what agreed with me, but no diarrhea or vomiting. Pancreatic enzymes seem to be working well. No need for screen and haven’t become diabetic!

It did take over a year to get most of my stamina back and now nearly 2 years out I feel so much better.
*Since my cyst had not crossed over to cancer, I did not need chemo!!

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Creon not screen

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@weezi

I had a Whipple 5/13/22 at age 70.
Eating small amounts of food throughout the day helped. I had nausea which I later found out was due to Bile Reflux (surgeon had to relocate my bile ducts 50 cm lower in the small intestines). Eating was trial and error as to what agreed with me, but no diarrhea or vomiting. Pancreatic enzymes seem to be working well. No need for screen and haven’t become diabetic!

It did take over a year to get most of my stamina back and now nearly 2 years out I feel so much better.
*Since my cyst had not crossed over to cancer, I did not need chemo!!

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Thank you, for sharing your post Whipple journey! It is very encouraging to learn that even though it will take some work, recovery to a normal life will be possible.

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Thank you for sharing your post Whipple experiences! I am learning that each person's recovery is different and gradual steps post Whipple is key. Wishing you continual improvement.

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@carfbuch

I have been told by my surgeon that I need to get a Whipple due to a Mucinous Cyst on the head of my pancreas that features some worrisome features. I am concerned about the quality of life after Whipple. Has anyone of you needed IV Feeding, problems with diarrhea, nausea and vomiting? How long did it last? I am glad this is being caught before it turns cancerous, but just want to be prepared for what to expect in recovery. Thank you for your feedback!

Jump to this post

I had my Whipple in 2012 but was not prescribed pancrealipase initially. Having exocrine pancreas insufficiency after the Whipple could have simply and quickly been ameliorated with pancreatic enzymes replacement therapy (PERT). Once PERT was prescribed, my quality of life significantly improved. It restored normal GI function and I was easily able to gain weight, muscle mass and strength. Today I feel as good as I did before onset of symptoms leading to my diagnosis 12 years ago.

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Thank you for sharing your experience post-Whipple. From what I am learning, many people end up taking digestive enzymes post Whipple to help with digestion and absorption on nutrients. Happy to hear you are back to good health.

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