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To whipple or not to whipple? What is quality of life like after?
Pancreatic Cancer | Last Active: 10 hours ago | Replies (35)Comment receiving replies
Hello. I am 69 years old post pylori’s preserving whipple for 1 year. Grueling surgery with many complications. Was in Columbia Presbyterian for 5 weeks, 1 week in ICU, etc. went home with TPN. Then after that and no eating at all for a while started sips of broth, then soft food. Also had hydration through picc line which is finally out. Never needed chemo. I had severe diarrhea for 9 months up to 9 times a day. Still have diarrhea whenever I eat, painful cramps, gas and now constipation too. I’m a mess. Can’t go out too long and can’t go to a diner or restaurant right now. I take Creon. Any suggestions. I need help.
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@ln100 After your Whipple procedure, were you evaluated for Exocrine Pancreas Insufficiency (EPI) by having a fecal elastase-1 test? The GI symptoms you describe are classic for EPI. If you were prescribed a pancrealipase such as Creon or Zenpep. The dosage will need to be optimized based on the content of fats, proteins and carbohydrates. There is an online dosing calculator at pert calculator.org. Optimizing my PERT dosage was the game changer for me. It resolved the GI issues and normal function has been achieved.
If you eat high fiber vegetables and legumes, they are complex carbohydrates that pancrealipase does not break down. To eat high fiber foods will require the enzyme alpha-d-galacrosidase which is the OTC product Beano. A capsule taken with these foods will digest them without the formation of gas and cramping.
Some patients develop sequelae after the surgery. Whipple such as lactose intolerance, gluten sensitivity, Small Intestine Bacterial Overgrowth (SIBO), IBD/IBS, colitis, Crohn’s disease and others. A consult with a GI specialist who will do a diagnostic workup can determine what pathology my be causing your symptoms.
Sabrina Oliver R.D., at Columbia-Presbyterian Medical Center is part of the pancreas program. She is the Registered Dietitin with the credential C.S.O. (Certification Specialist Oncology. She will be helpful is symptoms management and recommending a GI specialist at Columbia to do a diagnostic workup.