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,
I had a whipple on 3/1/2004 and just celebrated my 5 yr. I was young when diagnosed and only 30 when my surgery was preformed. I am now able to eat sooo much more but still cannot eat dairy. I have spoken with 2 other whipple survivors who cannot eat dairy either. Good luck to you and it DOES get better!
Whipple'd
June 26, 2009
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
Dear John, you can certainly have your remaining pancrea removed. I did. I suggest Dr David Sutherland at the Un of MN
Ka
May 2, 2009
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
My name is Linda Hageman RN. I sent you an lenghty e-mail via facebook but do not know if it was sent to you. So I thought I try this venue. I had a Whipple Procedure at Mayo Clinic, Rochester MN. 21/2 years ago and would like to share advice on life after a Whipple Procedure, becuase you literaly have to take one day at a time. You can e-meil me at linda@hagemanFoundation.org. or call my Foundation ’s # is 866-612-8579
Linda Hageman RN
January 26, 2009
I was diagnosed with pancreatic cancer in January 2009. I had the whipple on 1-9-09. At first, my internist thought I had hepatitis as I had turned yellow. She called me back and told me to go to the emergency room. I had many tests(sonogram, cat scan, MRI) and the ERCP as my bial duct was obstructed. This is when the cancer was discovered. My story is basically like yours except that I spent the weekend in the ICU being cared for by a wonderful nurse named Richard. My pain was regulated that way. I got out of the hospital ten days after my operation. On Monday, I started radiation with Xeloda twice a day. This is to make sure that all the cancer cells were removed. After six weeks of radiation, I will face four months of chemo. My upside down smiley is pretty numb. My surgeon says that it will be that way for at least six or more months. My appetite has returned. I was a smoker for 40 years and I have quit cold turkey. I had a lot of trouble with the taste of food, but I think that had to do with the fact that I had taste buds again. I have been very lucky that I did not have any pain prior to turning yellow. I was having some indigestion and have never been known to go to the doctor at the drop of the hat. Now I know that these were little symptoms that I should have been listening to. I am 56 years old and hope to have a long life. I am taking it one day at a time.
Felicia
March 3, 2009
Felicia, thank you for sharing your story. I’m so glad that the surgery went well and that you’re doing so well in recovery. There’s still a long road ahead but it sounds like you have a great attitude and a positive spirit! There are not many of us out here for advice and support, so I hope you can find some via this site. If you’re on Facebook there are also some groups there with people who are living the whippleLife! I just had my one-year check-up and everything is fine so it is very definitely possible! Best wishes and good luck for all that is ahead. Feel free to continue to share your experiences here for inspiration, advice, and support.
whipplelife
March 3, 2009
Thanks for your site.I’ll be 45 in June,have a 4 year old boy and wife and had a Whipple 3/12/09.I’m very grateful that in the end I did not have cancer.They tell me the path report shows chronic autoimmune pancreatitis.So I am left with about 50% of a pancreas that is pretty damaged.My heartfelt sympathies go out to all who have been Dx,d with cancer.I had to make a decision to go ahead with a Whipple or watch and wait on something that University of Michigan and Drs at Johns Hopkins were highly suspicious was cancer.It’s a real eye opener how many gaps of understanding there are regarding the pancreas.I had to do what I thought was best to ensure I could be around for my son/and wife.Hope I don,t sound grateful,but knowing if I had cancer or not would have made my decision much easier.So far eating has been tough.I’ve lost ABOUT 15 pounds since surgery.I used to just love eating,and all the ladies who love me (wife/mom/mother in law)loved feeding me! I had one boout of pancraetitis 11/08 and the whole saga began.These changes are alot to handle in 4/5 months,but it would be far worse if I was,nt lucky enough to dodge cancer.I’m not a man of great religious faith,my wife is the Catholic,but hopefully as time passes,I’ll get happier! I know I have to be strong for my son.Has anyone gotten upper left abdominal pains after eating,especially at night? I don’t seem to have as many symptoms after breakfast.Peace to all.
Dan
March 29, 2009
Hi Dan! Yes, I had a great deal of upper left quadrant pain after eating until about a month ago. I am post Whipple by about 6 months. Enzymes were a great help to me and now I am eating and digesting ‘normally’. I owe my life to a terrific surgeon (Dr. Michael Bouvet) at UCSD in Southern California. If I can be of any help here to anyone with questions, please email me at Cjean37@gmail.com
Cj
June 7, 2009
I had a whipple 12/18/08 in Memphis TN. My surgeon was Dr. Stephen Behrman. He is phenominal. I highly recommend him to anyone in this area that needs a surgeon who does this procedure on a regular basis and has the success rate he does. That being said, my recovery was very slow in the beginning. Probably 4 months until I could eat pretty much anything I want. Some things I digest better than others, you learn that as you go along. My activities are pretty much back to normal. I exercise about an hour a day, anything from bike riding, walking, or swimming. I think that helps me alot. From time to time I feel like I am having muscle spasms in my upper mid section. Some have said it must be healing pain, but I don’t know. Has anyone else experienced this? Occasionally I hurt, but taking an antacid daily and eating Tums when my stomach hurts a bit has helped. Bottom line, I’m grateful for every day I have and live it as such. I don’t take life for granted anymore and know that God gave me a second chance for a reason. My best wishes to all for a long and healthy life.
Rita
June 15, 2009