To whipple or not to whipple?

I’m about 11 months post-Whipple (pylorus preserving). Post-surgery chemo until August, so hard to distinguish some chemo vs surgery recovery/issues. But main continuing issues besides chrmo-induced neuropathy are continued fatigue (could be chemo not surgery), bowel habits more regular but less formed than before, and appetite for various foods changed. Luckily pancreas recovered enough I haven’t needed enzyme replacement after the first couple months. But that was a pain while it lasted (having to take one or more large smelly pills every time I ate made me not want to eat!) Otherwise, next to no pain after initial healing. Haven’t regained my strength/stamina yet but am generally fully functional.

Bottom line - very glad I had it as it’s the only potential cure for pancreatic cancer.

I am an 86 year old female. Whipple was done on 9/23/25. Having lots of gas pains. Can't eat much so have lost more weight. Have to take creon and it gives me painful gas. Sounds like no other options besides the whipple. I had cancer in my bile duct and the pancreas had shrunk and not working. I lost 35 pounds total.

Hello,
I am not sure you will find this helpful or not. I am a 50 year old male, have had zero health issues in my life (other than broken bones here and there). 3 years ago (back in 2022) I started experiencing a very low grade stomach ache. A couple weeks later, I still had the stomach ache (i tried everything from Pepto, to GasX) and nothing seemed to help, however it did not get better or worse at this time.

My doctor of 20+ years had just died from COVID a few months before, so I found a new doctor, and was instantly told I was dealing with an ulcer and to take this medication for 4 months and come back. 4 months later, I was not better off, no worse, I was then referred to a gastroenterologist.

To save time, and years off this story, the conclusion was:
I was in and out of the hospital time and again, generally for 3 to 4 days stay at a time. I had been cycled through 7 "world class specialists" only to be told that no one could figure out what was happening with my body. There were days of severe pain, days I could not get out of bed. I ended up losing almost 100 lbs, because I could not keep food down, and I was having a max exodus of Bile from my system, at both ends.

Getting no help from anyone, and feeling like it was the end (death was very near). I was finally contacted by a doctor at the Mayo Clinic - I had sent my last 2 years of medical files to them, as I was boarding a flight to Switzerland to meet with a doctor to explore medically assisted suicide, as I was feeling like there were no options left.

I was told that this Dr. that called me (wish I could remember his name) said he had reviewed my file and got me an appointment with a Gastro at VHC in Arlington, VA. I met with him and we decided to start from the beginning - that means all the testing, all the colonoscopies, all the endoscopies, all the pain, all the poking and prodding. I was ok with it, if it meant a solution. Again, they were left baffled as to why my pancreas was swelling (and when it would go back down, it would not go back to normal, but slightly inflated). This kept happening over and over, each time my pancreas getting larger and larger. Finally, having collapsed at home for a bit and waking up on the floor, I ended up in the emergency room. I was introduced to my surgeon, and he told me about the Whipple - and while I was non cancerous, it may still be an option.

After researching the Whipple - HELL NO - this was not for me, and I was not about to even entertain the procedure (specially after I watched part of it on YouTube - I do not recommend this)

2 months later, I ended up in the hospital again - to be told that if I did not have surgery, I would likely be dead within 6 months (that would have been December 2024, 1 year ago). I ended up having a full open whipple on July 1, 2024. I am 1 year, and 5 months out from the surgery, and while I feel like i became a "hospital celebrity" at my hospital for making such a quick recovery, I was able to go home 6 days after my surgery, I did not feel like myself inside - understandably.

Being noncancerous, I did not have to go through Chemo or Radiation, I am lucky!
I have my good days, and still have my bad days this far out post surgery. I am a person that has always been highly energetic, however, my energy levels today are a fraction of what they once were. However, at least I am not in pain daily.

Anyway - if there are any specific questions you may have about the surgery, or the recovery, or trying to return to a normal life - please feel free to ask away........

@luke333t
Thank you so much. Sounds a lot like my case. I would not be here today if I had not had the whipple. It is almost 3 month and
Have had pain all day today. Is there a better life ahead for me?

@johnny1955 It does get better. For me, it was right near the end of month 4 when my stomach actually started to feel like a stomach again. Today, I have mostly good days, but now and then, i will have days where i just do not feel hungry. I have finally learned how to eat small but balanced diets. Oh, and hopefully not too much information...but at about month 6 or 7, you will actually start to have "normal" bowel movements......

@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.

I was 65 and in excellent shape in 2023 when diagnosed with PC. After 6 months of Chemo followed by 3 weeks of radiation I had the Whipple in April 2024. It took about a month before I started to feel somewhat normal, and after 6-8 months I was back to a normal lifestyle and there isn't anything I can't do that I could pre-whipple. So for me it was definitely worth it. Best of Luck.

@jimkirby
This is super helpful. I don't have a whole lot of choice regarding the procedure. My adenoma is almost certainly going to progress to adenocarcinoma in the future - the only question is when and whether it fully blocks my intestine first. I am incredibly fortunate that it was caught before it was malignant and it would be foolish not to take advantage of the opportunity I've been given. That said, the procedure is pretty intimidating and I find myself spending (probably too much) time focusing on the things I will no longer be able to do after January. I will take your advice on being active and embracing the diet changes and creon with food. Best wishes in your recovery!

@jnowling
Thanks this is helpful. Especially the bit about there not being anything you cant do that you couldnt do pre-whipple. Something for me to strive for!

@luke333
Thanks. Will admit that non-normal bowel movements are towards the top of the list of recovery symptoms I'm not looking forward too. That said, its great to hear that you're having mostly good days. Gives me hope as to my outcome. Best of luck in your continued recovery!