I had a whipple in 92 when I was only 22, some things I've learned since then.

Hiya folks,

I just found this site tonite, and have been reading the message boards for a few hours. One thing I have been seeing are peoples questions regarding post surgery stuff. Allow me to share a few things with you guys, hopefully this will answer some questions you are unable to find answers to.

Im gonna skip alot of the backstory and get right to the meat of it all.  I was almost 22 when I had the surgery done in 1992, in great health and all that. I am also a non-cancerous whipple survivor, never had it thankfully. I spent about 50 days in the hospital recovering from the whipple. The biggest problems were these: borderline diabetic(too much sugar makes me sick), hypoglycemia, insane amounts of gas(at times), numbness above the scar(drove me crazy for years lol), digestive problems, reflux, and the biggest thing PAIN.

It took me ten years to figure out that I became lactose intolerant because of the surgery. Deleting milk from my diet make a huge difference. Coffee with any kind of dairy creamer in the morning will have me in tears before the day is over.

Fatty foods are not the best thing to be eating, it caused massive amounts of gas and pain(from the gas).

Reflux---if you hate waking up a few hours after you go to sleep cuz of acid in your nasal passage and throat, dont eat right before going to bed. Peanut butter for some reason gives me reflux. Its the only thing that gives me reflux also. Sleeping on my right side helps matter alot, the left side causes digestive problems. Has to do with the way things are sewn together I guess.

Pain---pain is from the gas(in my case) trying to escape through or beside food while it passes in the intestinal tract. If I am bent over for a minute sometimes, the pain will be coming soon. Happens when I eat gassy foods, or eat too much before letting food pass through my stomach.This pain, for me, is more than a ten on the scale, worse than childbirth, describing it would be too graphic, and would most likely make you uncomfortable. Believe me when I say its massive. I had a nice career going in the roofing business til the pain just about put me unconcious while I was 40 feet above the ground. Nowadays when I get a massive pain, my face goes numb, ears too, I will break out in a sweat and will be soaked to the bone in a minute, takes the strength outta me for few hours.

I had an x-ray done a few months ago and was surprised to see 30-40 staples inside me. I thought they used dissolvable stitches. 

As far as a diet I follow. This wont work for everyone, but it works for me.I eat ALOT of protein. I try to limit my carbs, but its not an Atkins thing, its choice. Mostly the hypoglycemia dictates what I eat, and I try to eat healthy, low fat, low cholesterol, low sugar stuff. I am not a health food nut, what I eat works for me. I was taking Pancrase(enzymes) for the first few months following surgery. Havent taken them in more than a decade.

The doctor said he took half of my stomach when he did the whipple. I must have had a huge one, cuz i can still eat a whole tombstone. I dont recommend it to you tho, if you have had a whip. It took years to get me back to the shape im in now. I eat mostly meat and taters, breads, some veggies, sandwiches, salads, soups, frozen things, pasta still gives me probs tho.

Suggestions on diet... cut down on fat and sugar, anything that will cause gas, like pastas. Drink some water bout 30 mins before eating, drink nothing with your meal, and 30-45 mins after you eat you can have water again, or juice, pop, whatever you drink. Alcohol is bad. The sugars are hard on the pancreas, whipples leave you with much less pancreas than you started with. 

I think I covered about all I thought important. I cant tell you anything specific about you tho, were all different. I might be a record holder of a non cancerous whip survivor tho.

The biggest thing I can impart to you is pay attention to your body, listen to it and give it what it wants. 

Just a parting note on the pains, I had many tests and doctors tell me the same thing...We dont know whats causing your pain or how to tell you how to manage it...I had to figure it out myself. Dont go altering your diet cuz of what I say tho, ask your Doc or nutritionist first. 

Hi, I was very gratified to find another long term to read your letter to everyone.  I had Pancreatic Cancer in 1990 and underwent a whipple at that time.  I am fine now, also.  Eating........hmm, a real problem....I cannot eat a lot of fatty foods, I get reflux also at night.  I take Pepsid AC for it and it works like a charm.  I have trouble with veggies and salads.  Unlike you, I like milk, although I cannot have a lot, lot of it!  I try to eat a lot of chicken.  I like sweets and think that I probably will be diabetic sometime and was warned that may happen.  I always tell my wife that if I ever keel over, please check my sugar first!  I don't have all that much gas but it is so painful when I do that I have to freeze, not move till it moves on in the digestive tract.  I am STILL uncomfortable where my scar is!  Even though my Dr.'s know my history, they always marvel at all the surgical staples inside me.  I know several people who are long term survivors after the whipple so it is not impossible.  You must all keep positive attitude and be strong.  I found that once I made up my mind that I would be ok, it got easier and easier.

Larry

NYsurvivor,

I was very gratified to read your story of long- term survival after PC and the whipple and would be interested in more details if you care to share. How old were you at diagnosis, what treatment after surgery, any metastasis, if so where and what treatment did you have?  My husband age 75 had a whipple 12/06 followed by 28 days of radiation with IV infusion of 5FU during the week while having radiation.  After that was finished, he started 6 months of Gemcitibine which continues currently.  This is a vicious disease that does not respect life, and from reading on the John Hopkins support board, I am aware how often it kills.  You are extremely lucky indeed.  You are the longest- term survivor I have heard of; the folks on the John Hopkins board would probably love to know about you.  Why don't you drop in there and introduce yourself, that always makes them happy and God knows, they need all the hope they can find.  Stay well!

Joan in Chicago   

Wow, thanks for all your help and for sharing your experience.

I had a whipple in Nov. 06, just a mere (almost) 9 months ago.  I also am a non-cancerous survivor. (luckily)

I also have struggled with gas though not painful, there was alot and awfully smelly (sorry).  It has been life altering to say the lease.

I also found that milk products (which I love) cause more problems then they are worth. Also, fatty foods are out of my diet,  and I am just now experiencing problems with my blood sugar.

Here is how I have finally solved my problem. Eat small meals

 -I take Creon, a pancreatic enzyne, and 2 beano tablets before each meal.

-Then I take between 1/2 and 1 chewable Fiber Choice after each meal. 

-At night before I go to bed I mix 2ounces of  Aloe Juice in about 2 ounces of diet iced tea.

  I can actually go to work and out with friends without being stressed over the gas problem.

IAs for the pain from the surgery, I am still very uncomfortable and yes in pain most of the time....guess living with this is just part of the deal.

I truly wish that any and all people who have or will go thru this surgery could get this information about the after surgery effects and possible help from their doctors instead of suffering needlessly. 

Thanks again for taking time to share.

Melody 

 

 

  

 

Hi there....and best wishes.  I read your post with great interest.  I too had the whipple three years ago at the age of 42.  However, mine did have cancer in it.  My doctor prescribed pancreatic enzymes when I eat.  I have no diet restrictions or problems.

I was told than when you are missing some of your pancreas, the body can't break down the fat which is not healthy.  So I take 2 pancreatic enzymes before each meal.  No problems.

I am doing well.  I am a survivor.

Best wishes!

tn

Your message sure helped to alleviate some major concerns.  I am schedule for Sept 24 for a Whipple.  It is a hard decision as they don't think it is cancerous, but then they cannot tell me how long the tumor has been there or if it has been causing all the pancreatic attacks over the years.  I was attack free for 13 years and then in March 07 I had another one and that is when they found the IPMT (tumor) in the head of the pancreas.  To me, that is a major wake up call and being pro active is really the only choice I have, not doing anything and just watching it doesn't make sense to me.  But I really haven't been able to find much info on the after life of a Whipple.  Thank you for sharing this very important information.

I found this web site just this week.  I'm so glad to find a place to meet other survivors.

I had a Whipple in 2002.  Early stage PC, no involvement of lymph nodes or other areas outside of pancreas.  

Doctors do the best they can I think.  But apparently there are so few long term survivors, they just don't know a lot about long terms effects. 

It took three years to get my strength back.   I was 50 at time of surgery  Year two post surgery, I was diagnosed with diabetes. Fortunately, I can control that with diet and exercise.  

I can eat almost anything I ate before Whipple, thanks to the miracle of pancreatic enzymes.  I take Creon.  Doctors can make recommendations about quantity of enzymes, but I learned how much to take depends on what I am eating and total calories consumed in one meal.  Trial and error, but if you pay attention you can figure out what works for you.  With adequate pancreatic enzymes, I have no problems with digesting fats or with gas (which was terrible until they were prescribed six months after the Whipple).  I eat low fat meals mostly, just as I did  before the Whipple so there was no big dietary changes for me. 

Even though I feel well and I'm active, I have accepted I will not have the stamina I had before the Whipple.  The solution is to stop and rest when I am tired.  If I overdo it, I can be totally wiped out for a day or two. 

I still  have problems with the surgical scar, very sensitive to pressure from clothing.  One of my doctors told me the truth which is that  the sensitivity goes away for some people in three years or so, but for some it never goes away. I am apparently one of those.  I wear off the waist jeans and do the best I can to not irritate the scar tissue.

The emotional challenge of survival is a big issue and one that I think is sometimes downplayed .  Year one and two, I was very glad to be alive, but sad and prepared for death because of the statistics related to PC.  Year three for some reason was the most difficult time emotionally for me. I had survived beyond the two year average.  What if I lived a lot of years with this elephant sitting in the living room?  How was I going to handle it and not go nuts? After that (and this was not easy and is still an occasional challenge, especially on days I'm not feeling well), I was finally able to just accept that I am alive until I die. When that elephant trumpets now,  I am able to focus on the thought that today I am alive, I will live in this moment.  Maybe other survivors know what I'm talking about.  I think unless you have lived this reality, it is not possible to fully understand it.

My wish for everyone reading this is good health and happiness. 

 

 

 

 

 

  

 

A surgeon is implying that there probably wont be any negative life expectency changes or lifestyle changes.

The comment is that 25 years is a long time to survive after a whipple. Should one expect not to live long after that? How would this affect someone 40-45. Should they expect to live past 60? 70? 80? after a whipple?

I kinda suspect with this change to the digestive process, it would have a shortening on the life expectency.

Feel free to share more details. Thanks.

 G