after whipple surgery

My whipple surgery was June 29, 2006.  Complications due to inflamed tissue being removed.  3 major nicks in vessels.  Agressively used retractors 3 times.  Said would take twice as long to recover.  I have had several problems since.  Have little to no energy. Nov. 2008 found blockage in small intestin, but never described except for being hard and ERPC scope could not get past.  With all the problems I describe each month doctor says all test shows ok.  It was good to see others having same problems.  When out of ICU after sergery I asked my surgeon if there was any place on the internet to get info for after I get home and he told me no because 90% of people who have the whipple are dead in the first year-80% next-70% next-by the 5th year 99.9 are gone.  (I was given 4 months to live before surgery)  My home doctors explain little to nothing of tests results from blood or MRI's that have been done since coming home (3 MRI).  It's taken 2 weeks to get on this site since I found it so I'm looking forward to learning what I can and sharing what I know.  This whole experiance has taken over 10 years.  220lbs down to 145lbs at time of surgery.  Post surgery after 3 weeks 113lbs.  2 years to get to 160, and now back to 145.  Shooting for more than 2 more years.  All thru all, God has been unbelivable in helping me overcome all I have faced so far.  Looking forward to positive info., and sharing what I know. 

Well, Hi!  I think you need a more compassionate Dr.  I had my whipple in November of 1991.  It takes a long time to get back to yourself.  A year or more to gain the weight....not even all of it.  It is a major surgery and transition.  You must watch what you eat, how often.  You will get tired but you are here to see your family grow up, in my case, grandchild.  So much more.  Just keep a positive attitude and know you will be ok!  If you don't think you will be good, you won't!  Write me anytime and I will be happy to talk with you.  I think that there are more and more of us surviving long term, all the time.  Larry

 

On 9/11/2009 Nysurvivor wrote:

Well, Hi!  I think you need a more compassionate Dr.  I had my whipple in November of 1991.  It takes a long time to get back to yourself.  A year or more to gain the weight....not even all of it.  It is a major surgery and transition.  You must watch what you eat, how often.  You will get tired but you are here to see your family grow up, in my case, grandchild.  So much more.  Just keep a positive attitude and know you will be ok!  If you don't think you will be good, you won't!  Write me anytime and I will be happy to talk with you.  I think that there are more and more of us surviving long term, all the time.  Larry

Thank you Larry.

I have learned alot both before my surgery and after.  Building up to the time of surgery I suffered from what I called "food roulette" where everything I ate had a negative effect to some degree.  After surgery I took some things I became aware of over time to help my diet where the things the doctors prescribed seemed to not work.  Over the counter and prescribed enzimes before, with, and after meals fell short of keeping the comfort level exceptable to enjoy food.  Probiotics seemed to improve aftereffects of eating.  Mainly the probiotics that require refridgeration to maintain potency.

Believe it or not, in researching and trying to identify some teeth on a southwest carved mask (which was deer), and watching a show on the Outdoor channel about feeding deer as part of their management, I learned that as browsers deer can not survive on only one source of food, or having that food in large quanities.  It will cause all sorts of digestive distress and eventually kill them.  I realized I was a "Browser".  I have since restricted my diet to the hand full and several times a day of most anything in reason, just like a deer as it makes its rounds through its day.

I still remain very weak especialy my legs.  The feelings are best described as being like the sensation of "fear and flight".  Tightness in my lower stomach.  Ringing in my ears (I can count my pulse). No energy.

This keeps me unable to function at any level.  I have my own small business (25+ years) and I need to be there.

Right now I equate my digestive tract as an abandoned land field.  Smoldering rot and a lot of methane gas as the byproduct.

We do have a good health food grocery store in the area so I have a good source to take advantage of.  My big problem is getting people to understand that I am unable to process food normally.  Leafy greens, certain 4 legged creatures and other types of beans and vegetables can play havoc if eaten more than a couple of days in a row or in moderate amounts at one time.

I know a person needs at least 60 grams of protein a day to maintain muscle mass.  Ensure and like products are expensive and you need to drink 10 or more a day.  I've used Carnation Instant Breakfast w/whole milk (10 oz.) w/a scoop of whey protein, two times a day.  That's what brought my weight up after surgery.  I am not using it now but probably should. 

Anything else would help in variety as I seem to handle a food only for a short time and then it causes a problem.  One month ok, the next no way.

Thanks again Larry

Hi Sunwolf,

I don't know from your postings if you have tried prescription strength pancreatic enzymes.  If not, you should consider asking your doctor to write a prescription and give them a try.  Many of the symptoms you described should be alleviated by taking the enzymes.  Those available over the counter are too weak to be effective. (I tried them before receiving a prescription.)  The weakness you describe may be due to malabsorption of nutritional value of foods you consume.  Prescription strength enzymes will help.

Have you been checked for diabetes?  Often people who have Whipple develop diabetes following surgery.  I did, although fortunately I can control with diet and exercise.  Diabetes can cause muscle wasting, and weakness.

Best wishes for improvement in your heath.

(My surgery was Nov. 2002.  I am able to eat most foods now.  I take Creon 10 with meals and snacks.  I know I will have to take the enzymes for the rest of my life.)

 

 

 

October 2008, I went in to the doctor for my routine blood work to re-nu my blood pressure medicine.  I was a healthy 49 year old male other than high blood pressure.  My liver enzymes were off the chart so they did a sonogram.  The test reveled a mass on my pancreas.  After a cat scan, my doctor informed me I needed a surgery called a Whipple Surgery.  We scheduled the surgery for 10 days later, November 12, 2008.  The best day of my life was the day before surgery that I spent with my wife.  We laughed, cried, prayed and cried some more.  My last meal before surgery was with my wife at a greasy bait shop/restaurant.  

The surgeon told me my surgery should take about 3 hours.  I remember the doctor said if the cancer had spread too bad he would just close me up and start Chemo and radiation.   I saw the clock before they put me under and was relieved when they woke me up and I saw it had been about 3 or so hours. 

I remember a nurse telling me in ICU that the first 3 days would be really tough.  After that, each day would be better and better she said.   ICU was the worst experience for me.  I did not sleep and spent most my time watching the clock and waiting until my wife and children could come see me.  

My recovery has been remarkable.  It was not easy but God has really answered prays in my favor.  I remember crying after 10 days when they put that beautiful piece of jello in front of me.  I remember crying the first time I got to sleep in my own bed.  We celebrated every time they removed a tube.  I had trouble sleeping in the hospital and at home so my wife would hold my hand until I fell asleep. 

I had a pain on the scar line and it felt like a ridge.  I was afraid they left something in me.  I would tell the doctor and he said it was normal.  I looked online at a message room similar to this one and discovered he was right.

While in the hospital God answered another prayer.  The  results came back as Lymphoma.  Very good news for me and my family.  I have been through 6 rounds of intense chemo over 4 months.  I went 4 months of no chemo and now I have just finished my first round of chemo where I go once a week for 4 weeks.  In 4 months I will begin the 4 week treatment again.  I will undergo this treatment for 2 years.

I only lost about 25 pounds from the time the mass was discovered until Chemo started.  I have gained about 10 of that back.  I do have trouble with diarrhea from time to time.  I have discovered beef (anyway it's cooked) does not sit well. 

My experience was not a pleasant one at all but with God, my wife and 3 children, church family, friends and relatives by me, I am a survivor.

Wow.18 Years!!!.I have been checking all these different sites and it seems like 5 years was the limit.I have a cancerous tumor blocking my pancreas and bile duct.A stent was put in both last friday.I am 56.Yesterday a ct angeogram was done to check the local blood vessels.If nothing has spread,pray to God,i could have the whipple done.What hospital was yours done in.I am going to the florida hospital in orlando but I have approval from my insurance co for a second opion at the H.Lee Moffitt cancer center in tampa.How much time from the point that they said whipple surgery could be done and the acutal surgery took place.thank you.dennis

 

On 9/23/2009 postman1952 wrote:

Wow.18 Years!!!.I have been checking all these different sites and it seems like 5 years was the limit.I have a cancerous tumor blocking my pancreas and bile duct.A stent was put in both last friday.I am 56.Yesterday a ct angeogram was done to check the local blood vessels.If nothing has spread,pray to God,i could have the whipple done.What hospital was yours done in.I am going to the florida hospital in orlando but I have approval from my insurance co for a second opion at the H.Lee Moffitt cancer center in tampa.How much time from the point that they said whipple surgery could be done and the acutal surgery took place.thank you.dennis

Hi Postman,

I'm not the 18 year survivor. Had surgery in 2002.  I can tell you that once they found the tumour blocking my bile duct on Thursday, I had surgery the following week on Wednesday.  The test to rule out artery involvement was done the Friday before surgery.  All in all, one week between diagnosis and surgery.  

Hope you have successful surgery.

 

 

Hi.sorry the message wasnt posted correctly.someone that posted a message to your message had brain surguery in 1992.I hope I can have the whipple surguery.Its been 2 weeks since they found my tumor to be adenocarcinoma.No spread to local blood vessels but a ct angiogram shows spots on my liver.tuesday I go for pet scan.what stage was yours found.thank you,dennis.

 

On 9/25/2009 postman1952 wrote:

Hi.sorry the message wasnt posted correctly.someone that posted a message to your message had brain surguery in 1992.I hope I can have the whipple surguery.Its been 2 weeks since they found my tumor to be adenocarcinoma.No spread to local blood vessels but a ct angiogram shows spots on my liver.tuesday I go for pet scan.what stage was yours found.thank you,dennis.

Hi Dennis,

My case was found very early.  Totally contained in Pancreas. No lymph nodes involved.  The surgeon and doctors told me it was rare to find PC at such an early stage.  I had developed jaundice which led the doctors to do a quick search for cause.  Developing jaundice was result of location of the tumour, and in my case helped in finding the tumour at early stage.  In scans before surgery, some suspect spots showed up on one of my kidneys and a biopsy was done which ruled out malignancy.   I hope the spots showing on your liver were anomalies and that you have good results from surgery.

Best wishes.

 

 

I had a Whipple done when I was 65 in December of 2003 at MGH in Boston. The tumor was found when I had a bad pain in my chest and went to the ER in NH. It was blocking the ducts and that was what caused the pain. I was transfered to the Dartmouth Medical Center that night and later my temperature went to 107 and I woke up packed in ice. They told my wife I almost died. They wanted to do the surgery at Dartmouth but the doctor didn't have any experience so I went to Boston. After checking around it was recommended that Dr. Warshaw was the man for the job. He had done hundreds of Whipples. He removed parts of my pancreas, liver, stomach. small intestine and gall bladder. I also did radiation and had a chemo pump. I never got real sick with the chemo, just felt weak. I went from 200 down to 160 but I gained about 20 pounds as I got stonger. I even started roadracing my motorcycle 5 months after the operation. I have found that I can eat anything except scallops now but I really don't enjoy food that much anymore, which is probably a good thing. I don't have diabetes or need any enzymes. Lots of people prayed for me and I believe that helped as much as the surgery. Faith will get you through most anything.