I have been getting several questions about the Whipple Procedure. I am starting this blog, on the Whipple Procedure, and would like to hear from anyone who has had a Whipple Procedure and what their experience was in the recovery process from the Whipple Procedure.
Soon I will be posting some information re: the Whipple Procedure, what to expect, what to eat, and any other information that we feel will contribute to this blog. Most of the time a Whipple Procedure is done to help people survive Pancreatic Cancer. On this blog we will certainly encourage people who have Pancreatic Cancer to blog on their experience having the Whipple Procedure.
I, myself had the Whipple Procdure done at Mayo Clinic in July, 2006, so I know how hard it is to recover from this surgery. It still affects me every day, but I do have a very many good days.
Linda Hageman, RN
Yes Jan, I am back to normal if not better. Sure I am a little more tired come evening but I fell like I can work just a hard if not harder. So yes I am back to normal activities, personaly I think some of the weight I lost helped me too. Well then again I am almost 200lbs again but I am also working out now too so I think it is more muscle. Please feel free to Cotact me with any questions.
I had a Whipple, gastric sparing, procedure in July, 2009. I was fortunate to have a benign tumor in mostly the pancreatic duct. Supposedly I only had 30-40 percent of my pancreas removed. I am on no extra medication with the procedure. My energy level is certainly better as 2 years have passed, but at times experience a “stunned” sensation, which started as I began to recover. I have to take Miralax to reduce discomfort in the area of the Whipple, which causes unannounced evacuation at times. Is a balancing act. Many vegetables cause me discomfort, too much food at one time, cantelope and etc.. I am in no way ungrateful for the relief of symptoms that I experienced before the surgery, but puzzled by the balancing act of diet, Miralax, rest,etc. Thanks for listening!
The phone rang at the time I finished my comment and I forgot to check the box for e-mail.
Thanks for the blog! Now I know that I am not the only “bear-in-the woods!”
Just posting that God has provided for us once again. Randy is back to work doing the heavy work that he once did before the surgery. He still has some bad days but thank God there is more good days than bad.
I am so glad for Randy. Keep up the good work and do not be discouraged is he does have a bad spell. I am 4 years post Whipple and still have some bad days. Of course I blame this on the fact that I had to have my whole pancreas removed.
I too am so thankful for this blog! I am likely still headed for a Whipple in 2012. I am so encouraged to hear that so many are doing so well.
Anne, I had a precancerous tumor on my Ampulla of Vater (where the pancreatic and bile ducts meet) which was removed in 2008. They did a resection, but it wasn’t the Whipple. They removed the tumor and the area around it and rerouted the bile and pancreatic ducts. Right after that I had many of the symptoms you described. I still had them a years after my surgery, so was tested for something called gastroparesis. That’s a normal condition to happen after abdominal surgery, but in my case it seems to be permanent. I can’t eat raw veggies or fruit and nothing with seeds or peels, have to limit fat and fiber and eat in small portions.
Sorry that was so long-winded, lol. Anyway, my tumor is returning and was almost at the precancerous stage in February when it was biopsied. I’ll be tested again in Feburary 2012, and if it is precancerous they will do a Whipple.
Did anyone become diabetic after the Whipple? If so, do you require injections or does diet or oral medication help?
Donna,
I was told the rule of thumb was in you are not a diabetic before the whipple you probably will not become one after. Glad you found this blog too, most people you find that had whipples are more than wiling to help. There is also a FB page too.
Well that’s a relief, lol!! Thanks Anthony! I’ll look for the FB page.
I was a diabetic for eleven years before I had a complete whipple. My journey started in 2009 when I had appendicitis and had to have it removed, unfortunatly they didnt tell me at the time that I had chronic pancreatitis too. Well in January in 2010 I started having severe pain through out my left side, and started getting all the tests and run of the mill done until october when they took my gall bladder out. well that didnt help any actually it just made things worse so i scheduled a follow up in december i was look i dont want to be on loritab the rest of my life. he was like i agree and we did research and studies on your case down at the university of utah and you total qualify for a whipple. so in january of this year i had one done to my total shock though they took the whole darn thing out because obvisiously there wasnt very much of it left. Im feeling pretty well now except I had a heptatic test last month and it was slightly elivated which either means im pregnant or i have liver damage from the stent the put in my small bile duct in february. The other problem is the gas i can literally kill someone with my stinch if they are too close at times it is funny but its quite embarrassing.
Oh gosh Melissa…me to on the gas, lol. Already.
Question for everyone: What is your best advice on preparing physically, and also mentally for this surgery?
I’m fairly healthy. I don’t smoke, I am within the normal weight range for my age and height, and I have so many food allergies/sensitivities and restrictions, that I can’t eat too horribly bad.
I am trying to increase my fitness by walking, doing other aerobic activities and doing some strength work.
Mentally, I’m reading as much as I can about the Whipple (hoping to totally get bored with the whole thing, lol) and the recovery stories, both good and bad.
So, knowing what you went through, would you have done anything differently before having the surgery?
Facebook Page which is linked to this website is WhippleLife
Donna;
Looking back to see if I would do anything different, I would say NO. I think all whipple surgeries are different in some ways or another. It is what it is, I don’t think you can prepare because of the differences. Do not overthink the situation. What you have read will help but until you go through it you don’t know how you will do. Wish you luck, Scott.
Thank you for the FB page info! There were a few, and while I thought I knew which was which, it’s good to know for sure!
Thanks Scott!
I will have time on Tuesday to research some of the concerns voiced here today. Unlike ACOR I am a Medical Professional and strive to present what I am always harping about but I will always to my best to provide you with actual, factual, up to date medical information. If I do not know the answer I have several Physicians and other medical professionals I can check for information for this site. there are many good people at the ACOR site including Dr. Stephen Marx and several of the people who post regularly that monitor this site and the American Multiple Endocrine Neoplasia Support site http://www.amensupport.org or this site the http://www.mywhipple.org site. Please if you have specific questions please email me directly linda@hagemanfoundation.org
I am an MEN 1 person and I have had to have extensive surgery including removal of most of my digestive system and complete removal of the pancreas 4 years ago.
These nonprofits were started by our family under the name of Hageman Foundation http://www.hagemanfoundation.org to be able to keep people informed and educate families with all MEN’s and we had so many inquiries from individuals having the Whipple Procedure we developed the My Whipple nonprofit to address these questions in a short period of time as most of the time people who are been advised to have The Whipple Procedure have only a short period of time to make this major life altering decision. I have been gathering information on Major Medical Centers that do a number of Whipple Procedures or Laparascopic Whipple Procedures. Time for Dinner. More Tuesday. Thank You for visiting our site linda@hagemanfoundation.org
My site offers complete privacy if you choose to email me directly. Our nonprofit was recently chosen by Mayo Clinic as a grassroots nonprofit they approve of.
Thanks Linda!!
Good evening all, my name is Angela I am 52 years of age, in great shape I believe, I do work out, eat right…THEN my urine turned an amber color, and I had uncomfortable pain in my upper gastric area which did not allow me to sleep well. Being a nurse i took pepto bismol, evacuated bowels…no relief, time for the MD. I took myself to the er. The took CT scan, after i violently vomited the contrast, then an ultra sound…no stones, but the see a small mass. GREAT!!! So of course WORRY…the an ERCP to place a stent in the cbd, and to scrub some cells of the mass/tumor for cytology. BENIGN, however, still need to have the whipple procedure in a couple weeks. I have done my homework, read blogs, viewed sites, Im just a little scared. I am so happy to read that you all are doing well, I pray I am just as blessed. Good luck to you all…Take much care & enjoy life!!!
My Goodness! If you will email me directly linda@hagemanfoundation.org I would be happy to get you some information on major medical centers and endocrine surgeons in your area Linda Hageman, RN
Hello Angela…being scared is pretty natural. Doing lots of research helps me in that regard. Good luck to you as well!!
Hi Donna,
It is very normal for you to feel scared, etc; however you need to do your research and get to a Major Medical Center. the reason is that the Whipple Procedures done at some of the larger Medical will have Endocrine Surgeons and the more you have someone, who had done several/year are more experience.
Linda Hageman, RN
Good Evening All,
Well, Im back. I went in to have the whipple on 9/07/11, when i woke up in recovery I saw my surgeon and said did you get it all…he looked me in the eyes, touched my shoulder and started to explain that they were unable to remove all of the tumor from the head of the pancreas, however they took a large portion and sent it to pathology. It is cancerous/adenoma, stage 3. They were unable to remove all of it because it grew around a major artery and the procedure would have killed me right there. Anyway, I saw the oncologist yesterday, he explained the chmo drugs and all of the adverse reactions…yuck. So, for an additional month or two, I figure I will just do vitamins, vegetables, juice, exercise, deep breathe…I want to enjoy the quality of life I have left, not to be sick almost immediately. I am not giving up, I am just doing another option…both are 50/50. Anyway, I just wanted to update you Linda on what is happening. I appreciate your response to my email, you are sweet lady. Thank you, Angela
I am so sorry; but do not give up the battle, educate you and be a good advocate, and find a physician that you trust. Linda@hagemanfoundation.org You may benefit fro our MY WHIPPLE page at http://www.mywhipple.org PAN CAN and the Lustgarten Foundation are
great sits to look at. All the best. Linda
I came across this blog while searching for info on my upcoming Whipple Procedure. I am 52 lost alot of weight this year. Worried about that. Can anyone tell me what to expect?
Thank You
James Hood
Portland Or.
Hi Melissa,
As far as the GAS you are having the Pancreas not only produces insulin but also digestive enzymes also, there are digestive enzymes that your physician can prescribe for you.
Dear James,
At Mayo Clinic, Rochester, MN. Dr Kendrick is doing Whipple Procedures with a Laprascope The information is on the site American Multiple Endocrine Neoplasia Support http://www.amensupport.org I will send the you tube link to you also as I have just gotten a You Tube Video of Dr. David Farley, MD, at Mayo Clinic who does an explaination of what the Whipple Procedure involves.
Well its been almost a year since my total whipple procedure, gas still comes and goes thank the heavens above my husband tolerates my (as we like to call it my blotation device) teehee or in the words of my kids im the last air bender lmao. Anyway doing well i take 660 enzymes a month now to supplement what i aint got which is nothing left. I also take a anti spasm pill when my guts decide to start rolling. at least it aint loritab anymore can we say caca. i did have a little spell in october but found out why i had all these problems in the first place. alpha-1 antitrypsin enzyme deficiency disorder let me tell ya that sucks a big one to but oh well i just pray that im still breathing and that my family is so supportive of me
Dear Melissa,
There are a number of pancreatic enzymes that your body cannot make any longer. The pancreas makes about 15 digestive enzymes and not all of them can be replaced. I take Creon 3-4 capsules before each meal. My physician says If I am having loose stools, that contains Fat or Oily to increase the Creon as necessary and I have found that this helps alot
I know that these meds are very expensive. Some drug companies will offer a discount price. If you need any help with this do not hesitate to e mail me
linda@hagemanfoundation.org
At this time we have had a generous benefactor that will double any donations that we recieve until January 15,1012.
Wvwey little bit helps even a small donation will help us to keep this non profit going.
Thank-You for your support
Linda
My son who is 36 had his surgery approximately a year ago. He is doing well while still adjusting to how much and what to eat. His surgeon said he did not have to take creon while his GI doctor prescribed the highest dosage for him (still a little confused about that). He recently found out that he will have to have a j pouch as a portion of his large intestines was left after surgery when he was 10 and of course has polyps (not malignant at this point). Any words of encouragement would be much appreciated.
Hi, I am 38 years old and had the surgery last year in april. I was diagnosed with a ascinar carcenoma (a rare form of pancreatic cancer). I documented my journey and hope that my experiences help someone else.
http://www.joydespitecancer.com
After the surgery I did 5 weeks of radiation and 4 months of chemo. In December the doctor said I am cancer free so I’m trying to just live (I have a 6 year old and a 19 month old). I have horrible gas so I decided to do a search to see if others had this issue. I have enzymes BUT I have not taken them, didn’t think I needed them but thanks to this site I am going to start taking them consistently right now.
God bless us all!