why whippleLife?
Living with a whipple procedure isn’t easy. Unfortunately the nature of the procedure is such that most of us who have undergone it are in such different circumstances that a strong network of “survivors” is almost impossible to find. That’s why whippleLife.
In the weeks following my procedure I desperately sought information about what I could and should expect during my recovery. “Everyone is different,” I was told. “There’s nothing we can tell you because everyone is different.” When things didn’t go quite right I was told, “You’re symptoms are atypical. There’s nothing we can tell you because your symptoms aren’t like those of others who have had this procedure.” (!)
It is my belief that regardless of how similar or dissimilar our experiences, by sharing our stories, or the stories of those we have known and cared for, patterns can and will emerge which can help those seeking to “recover from the cure” better understand and cope with this life-altering event. It is my hope that by creating and sharing this resource there will be a place where those of us living our lives with the whipple procedure can find strength, inspiration and hope.
I had a whipple on 3/25/08 and am still recovering. I would love to learn more about the issues others are having. Will I ever be able to eat normally again or am I stuck on a low fat non dairy diet for the rest of my life? Any help or advice you can give me would be appreciated. Thanks,
Janet
May 28, 2008
Janet,
This is why I started this blog to see what we can find out together. I’m still working on organizing my thoughts to describe the details of my last four months, but I hope that some of what I’ve gone through can help, though it can’t define your or anyone else’s path.
I can tell you that one month ago I could hardly eat anything. Even the “several small meals a day” was just too much. I was getting most of my nutrition via as many Carnation Instant Breakfast drinks a I could take in a day but that just wasn’t enough. Once things started to turn around, though, they did so rapidly. Last night I had steak, a baked potato and salad for dinner! I don’t eat like that every night but I’ve found that I can without ill effect. I’ve also found that Pancrecarb helps and even though my pancreatic enzymes are at a normal level my doctor told me that higher is better in my case, so if I know I’m going to be eating a large meal or something that’s “on the edge” as far as what my system can take, I always take the pancrecarb first.
What was drilled into me, and what I learned the hard way, is that nutrition is essential and whatever you can do to maintain your nutrition you have to do. I went back to the hospital twice, in part because my body just wasn’t getting what it needed to sustain the recovery.
whipplelife
May 28, 2008
The more I work on the blog the more concerned I become. I’ve uncovered several comments about long-term issues with the whipple surgery that are, quite frankly, frightening. Anyone just stumbling across a testimonial or two might feel as if they have no chance of a “normal” life after the surgery. I’m heartened, though, my information I came across very early in my process which indicated that rates of complication, short-term and long-term, were greatly dependent on the facility in which the procedure was performed and the experience of the team performing it. In addition, most statistics about long-term complications do not reflect recent advances in technique nor an increase in the number of well-qualified facilities.
I hope to be able to track down some of these more revealing statistics and see if a fuller picture can be presented. I’m inspired by the first person I talked to who had had the procedure. He’s a retired surgeon who had the surgery when it was 75. He’s now in his 80’s and leads a life almost identical to the one he did prior to surgery, including playing tennis several times a week!
Despite what is prevalent, there are many similar success stories out there and the statistics are not all hopeless.
whipplelife
June 16, 2008
7 years post whipple now having problems…where do you turn now as they can’t remove the remaining pancreas
John
July 6, 2008
John, I hope that someone reading this blog will be able to give insight into your situation, but would you be willing to share more of what’s happened to you? Do you know what’s caused the stomach problems and pancreatitis?
whipplelife
July 7, 2008
I am so happy to find you blog. I too am a Whipplett. I was diagnosed in January 2005 after a year of telling MANY doctors ‘there is something wrong”. Finally I was diagnosed with Pancreatic Cancer, not that I was thrilled, but glad to know it was not in my head (as some doctors had accused). I was not a surgical candidate and told by the best of tbe best for PC that mine was around portal arteries. Fortunately they were wrong, I did chemo for six months and had surgery 10/2005. Gee, its’ almost my third year surgery aniversary and my 4 year from diagnosed!. Note to Kiki: cellebrate life.
So glad to see your site and I would love to have a place to put my story as well.
THanks for doing this for those new ones who can’t find anything about this cancer or who to live with a whipple.
Kiki
August 24, 2008