To whipple or not to whipple? What is quality of life like after?

Posted by calvink69 @calvink69, Dec 9, 2025

Am 56 years old in generally good health, though with type 2 diabetes. Have a very large (41mm) adenoma in my duodenum. It's not malignant but is of a type that will almost certainly become malignant, it will eventually block my duodenum. I also have abnormal cells in the bulb of my duodenum, so endoscopic removal is not an option. Surgeon is suggesting a full Whipple, without preserving the pylorus. Realize that I'm blessed that things are pre-malignant but also didn't have a Whipple on my bingo card at this point in my life. Whole process has moved very quickly - started with anemia in mid-October and am looking at a potential surgery date in January. Would appreciate anyone's perspective on living with a Whipple and on quality-of-life post recovery.

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Profile picture for ln100 @ln100

@stageivsurvivor hi. Thanks for your help. I had work ups of every kind by my GI doctor. And I talk to Sabrina at Columbia every few months. I did use Gasx but it never worked. I’ve tried everything for everything. Except Beano which I will try. I don’t have any of those other things. I had test upon test and a recent cat scan. I’m actually going for another consult with a new gi on August 3. I figured it can’t hurt. The only vegetables I eat are well cooked string beans, asparagus, zucchini which I started peeling and mushrooms and fruit only applesauce, diced peaches and I started eating grapes. No others and no salad. I’m on a very restricted diet. Except I am eating chocolate every few days. I gotta live a little. But lately has been terrible. Not to be gross but I am constipated, have diarrhea, gas, cramps all the time and every time I eat its even worse. I tried that Creon dosing thing. I don’t understand it. I take 2 to 3- 36,000 unit capsules with “snacks” and 4 to 5 with meals. I was bad about the Creon before but for the past 10 days I eat nothing without it. One problem I do have is eating too much and too fast at one time. A bad habit. I’m trying to fix that too. But I feel like the doctors are useless. I feel like I’m going backwards.

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@ln100 I used to be a fast eater but after the Whipple procedure, I eat slow, chew thoroughly, sip water as needed during the meal. When I feel full. I no longer force myself to finish what is on the plate. It took awhile before I went back to having sit-down, structured meals. Coming to the realization I was going to have to work at it and keep notes, my GI tract returned to normal and got back to eating structured meals but at a much slower pace.

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Had my whipple 8 years ago next month, age 77. Though i would never say that things are like they were before the surgery, i have no complaints. Yes, i create more gas. Yes, bowel movements are different and the urge oft requires immediate travel to bathroom. I tend not to plan anything less than two hours after getting up in the morning. And yes, I do still have the occasional cramping which was awful at first.
But i eat essentially anything I want, possibly in slightly smaller amounts (use Creon). I hike, bike, swim and basically do anything i want, more limited i think by age than anything else. I do perhaps need a bit more sleep than before.
The whipple saved my life, and the life i have after is just fine.

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I had pylorus preserving robotic Whipple surgery 1 1/2 years ago after 24 weeks of chemo for PC. I’m 73 and feel good, just a bit less energy than before chemo and Whipple. I walk frequently for exercise. I take Creon with meals and discovered taking Beano with it has helped greatly. Digestive functions are back to normal, but I do eat much fewer fresh fruits and veggies as they do cause loose stools. I had no complications with the Whipple, but have some residual neuropathy in my feet. I feel very fortunate and life is good.

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Profile picture for calvink69 @calvink69

@jjmacc
Thanks for the reply. The question of pancreas recovery and enzyme replacement seems like a roll of the dice for most. Super happy to hear that this went well for you. Also great to hear about the good recovery outcome. To your point on post-surgery chemo, assuming the dont find something unexpected in my post surgery biopsy I hope to avoid chemo after that whipple, but time will tell.

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My husband had the Whipple on January 15, 2026. (He is 83.) After recovering from the surgery, he had two additional months of chemo, which he finished at the end of April. After the last round of chemo, he had low energy but no other significant symptoms. On May 29, we met with his oncologist and learned his scan showed no evidence of disease. He lost 35 pounds, and at this May appointment, he weighed 151 pounds. He then started on 36,000 units of Creon (two pills at meals and one at each of two snack times). On Friday, June 19, he weighed 158 pounds. We were thrilled! He also played pickleball for the first time since before surgery! It was a red-letter day for sure!

Things I think helped achieve this result are eating protein and increasing his calories even when he didn’t feel like eating. He also started walking and tried to get exercise daily. At first, he could only walk a short distance, but he kept at it and can now walk about a mile and a half at a time.

It is hard not to get discouraged when losing weight and not having energy, but persistence is very important and can produce results. I would definitely say if you are eligible for the Whipple to have it! Only about 20 percent of people with pancreatic cancer are eligible, so if you are eligible, go for it! Wishing you the best!

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Profile picture for stageivsurvivor @stageivsurvivor

@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.

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@stageivsurvivor hi. Thanks for your help. I had work ups of every kind by my GI doctor. And I talk to Sabrina at Columbia every few months. I did use Gasx but it never worked. I’ve tried everything for everything. Except Beano which I will try. I don’t have any of those other things. I had test upon test and a recent cat scan. I’m actually going for another consult with a new gi on August 3. I figured it can’t hurt. The only vegetables I eat are well cooked string beans, asparagus, zucchini which I started peeling and mushrooms and fruit only applesauce, diced peaches and I started eating grapes. No others and no salad. I’m on a very restricted diet. Except I am eating chocolate every few days. I gotta live a little. But lately has been terrible. Not to be gross but I am constipated, have diarrhea, gas, cramps all the time and every time I eat its even worse. I tried that Creon dosing thing. I don’t understand it. I take 2 to 3- 36,000 unit capsules with “snacks” and 4 to 5 with meals. I was bad about the Creon before but for the past 10 days I eat nothing without it. One problem I do have is eating too much and too fast at one time. A bad habit. I’m trying to fix that too. But I feel like the doctors are useless. I feel like I’m going backwards.

REPLY
Profile picture for ln100 @ln100

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.

Jump to this post

@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.

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I forgot to mention I stated getting Whipple spasms also. LN100

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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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Profile picture for Ampullary Carcinoma Survivor @jimk87

@calvink69
I can only share my experience with Whipple. I had the Whipple procedure April 23, 2025, I did have Ampullary Carcinoma so my choices were limited. I am also a type 2 diabetic and was a little overweight. I must say it was not a pleasant experience, I spent 10 days as an impatient post surgery. I had a chyle leak but that was the only complication. With all the discomfort and recovery time, diet restrictions and general felt bad for several weeks. Once I embraced my new diet and having to take creon with food it was a quick recovery. By beginning of June I was able to walk several miles a day on the beach. My biggest issue was with the chemotherapy that started in mid June and ended successfully last Wednesday. I did loose 25lbs by end of June, total I am 33 lbs from surgical weight. The result was 40% stomach, gallbladder, head of pancreas, 1.5’ small intestine, Duodenum were removed.
If you choose to have procedure just embrace the recovery and diet changes. Being active after surgery is critical, it is tempting to be sedentary but just walking will help with discomfort after eating the first few weeks.

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@jimk87 please help me to understand how often & how far you walked. Appriciate the help.

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Profile picture for katieliz @katieliz

I had the Whipple June 2025, so 6 months out. Bowel movements still wonky - not diarrhea but often loose and more frequent than before with sometimes not a lot of warning (taking Zenpep but dosage still being regulated, adding Vital Nutrients - non-prescription and much cheaper, can order on Amazon). I am 72 and was in excellent shape prior to PC diagnosis Feb. 2025. Definitely said yes to the Whipple, I wasn't ready to check out. Bowel issues are the only thing that I have to pay attention to these days. Pretty much recovered from Whipple after 2 months, and today no pain and I can do everything I did before, back to the gym, etc. Chemo makes me tired, but finishing that in 2 days. Looking forward to 2026! Would definitely make the decision to have the Whipple again, had partial removal of the head of pancreas, also gallbladder and duodenum. Seems my surgeon did an excellent job!

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@katieliz An easier way to optimize pancrealipase dosage is using the on-line dosing calculator at pertcalculator.org.

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