Pancreaticoduodenectomy, AKA, The Whipple

The following blog was inspired by constant questions on Cancer message boards. Those who are facing this surgery, search high and low for any information, needing to know what to expect. I was in the exact same position, almost three years ago. My searching before the surgery, did not yield many results....

My Whipple surgery was Sept 20, 2008. I spent 9 days in the hospital, unable to keep any food down. My hospital stay would have been extended, but, I demanded to be released. The only reason they wanted to keep me was because of the vomiting, but, they had no treatment for it. It was just my bodies way of finding the new path.

At the date of my release, I had not lost any weight. Pretty sure this was due to the iv's full of fluids, as my body was so bloated I felt I could have floated away.

From then until about Thanksgiving, I continued to vomit up everything. My appetite was good, just could not keep it down. There was no use in taking enzymes at this point. Despite the pain pills and anti nausea meds, I also continued with the "dumping" symdrome. My nutrition came in the form of a can of ensure, given to me by the case by the American Cancer Society. A god send, as this stuff cost 6.50 for a six pack , retail. Be sure to check into this. I mixed up fruit smoothies using this as a base, used bananas, and fresh strawberries and peach's that I had frozen the summer before.

Finally, around Christmas, I was able to find some comfort foods that would stay down. Chicken noodle soup, cottage cheese, mashed potatos and gravy, slices of cheese.

At this point, I had lost 70 pounds. I was then started on enzymes, that only helped my body to absorb some nutrients, the dumping symdrome however continues to this day. Nothing has helped with that, nor the extreme bloating and gas. The original enzymes, was then discontinued due to a ruling by the fda, and I was put on creon. Creon and I do not get along. There is something in them that makes me break out in hives.

I was never advised to have chemo nor radiation. Had big fights with my insurance over follow up PET scans, my blood work is checked every four months, and so far so good.

With Pancreatic Cancer survival rates being so low, one automatically qualifies for disability. Mine is a three year term, at that time, I believe it will be re evaluated. I am unable to return to work, due to my new digestive process, as the gas and dumping are not controllable at this point. I have days where I look and have been accused of being nine months pregnant, the gas and bloating are that bad. I seem to be alone as no one here understands the pain that much gas causes a person, and have become a hermit, cause its extremely embarrasing , and I have no control over it. It wants out when it wants out.

My life after a whipple sucks, but, I can tell you, that with four friends and family members who has passed away, all from lung cancer, since my diagnosis, I am positive, that any of them would have gladly traded places with me.

I continue to tell people, that God has a plan for me that has yet to reveal itself.

Everyones Whipple Surgery recovery is different. I am amazed of the ones who seemingly hop out of that bed and get back to work and only dream of finding a working concoction of medicines and or diet, that would help me progress back into the world.

My life today takes planning. Something I have never been very good at.
If there is something needing done that will take me out of the house, its usually done between lunch hour and supper hour. If there are plans to go out of town, seldom happens, but, hey, we do occassionally make a day trip, I must carefully monitor what is eaten the day or two before, get up early enough in the morning of, so my body can empty itself, sometime its 3 or 4 trips to the potty before I can safely say lets go. As the day wears on and the body begins to bloat, and the gas pains start, its time to call it a day. At times I will attempt to extend the day, but this can become extremely painful.

I do hope the day will come where I am again able to be a productive member of society. Until I can find a Dr. who can figure this out, and work with me on finding solutions, please forgive me for not being in attendance in many, if any, social functions, or even taking an early exit, if I am able to be there.