FREQUENTLY ASKED QUESTIONS:

The best patient is an educated patient. This FAQ section does not have a menu that you can click on for different subjects because the best thing for every  Whipple  Warrior or caregiver is to know all this information. The following was compiled from frequent questions that were posted on the Whipple Warrior Facebook page: Whipple Surgery Survivor Group:

 

What is the Whipple?

 

The Whipple is also called a pancreaticoduodenectomy.  This procedure is done to remove a tumor from the pancreas or bile duct.  During the procedure itself, the head of the pancreas, bile duct, gallbladder and duodenum may be removed.  Sometimes part of the stomach (the pylorus) and lymph nodes may also be taken out.  The small intestine is attached to the stomach and to the remaining pancreas and bile duct.   A great explaination of what a Whipple is can be found atThe Whipple Procedure.  Some very good examples of the Whipple surgery are in these videos: Whipple Procedure (Pancreaticoduodenectomy)3D Animation andThe Whipple Procedure

How long is the surgery and how long will I be in the hospital?

 

On average, the Whipple surgery takes about 6 hours.  Depending on the spread and other issues, the surgical duration can extend longer.  Ask your surgeon as they will give a guideline to the duration based on your circumstances.  After surgery, the average hospital stay can be 6-10 days.  Keep in mind this duration can extend given any complications.

I am afraid of pain, what will they do for it?


A lot Whipple patients have an Epidural. Some are given patient controlled epidural (PCEA) where you can put the button for more pain medicine. Others are given a patient controlled analgesia (PCA). This machine allows the patient to control how often you receive pain medication. Once you have bowel function and you are allowed to begin to eat and drink, everyone is given pain pills. Always let the nurse or doctor know if your pain isn’t being controlled

Why can’t they just remove the tumor, why does so much else also have to be removed?

 

The problem with only “taking” the tumor is the majority of that anatomy share a common blood supply (artery) so you have to remove it all. A good 3D
Animation of the Whipple Surgery can be foundHere

Remember, it is recommended to get a second opinion.

Why can’t they just remove the tumor, why does so much else also have to be removed?

 

The problem with only “taking” the tumor is the majority of that anatomy share a common blood supply (artery) so you have to remove it all. A good 3D
Animation of the Whipple Surgery can be foundHere

Remember, it is recommended to get a second opinion.

                          

Do you lose a lot of weight after surgery?

 

Everyone responds differently to the surgery.  Most of us were told that we would lose on average about 5-10%.  Some have lost much more then that and still others have lost very little weight after surgery.  This proves we all own our own journey and everyone is an individual on that journery.  One suggestion is to eat your favorite foods prior to surgery because you never know how they are going to taste after surger

  

I am really underweight and I was told I have to be fat to have surgery. Is that true?

 

One of our Whipple Warriors Stephen Weinberg responded with the following:

How can someone tell you that would not survive the Whipple based on your weight? Here is the deal from the Pancreatic Cancer side. No one ever told me I need to weigh this much or I am going to die, going into surgery. When I went into surgery I was 150 lbs. prior to having cancer I was close to 175 Ibs. When I went into my first surgery which was life saving I weight 137 lbs. In three weeks I lost 38 lbs. Believe me, if they could have done the whipple right there and then they would have. But, I was diagnosed Stage IV so they could not proceed with the whipple.

You do not need FAT to survive the whipple you need strength, and believe me I am not talking about muscles I am talking about inner strength. You know what you need to survive this operation a good doctor no a great doctor with steady hands, and your will to live another day

I hate when Drs. that steal hope, but I hate even more when someone that is going through the same issues steals your hope. 

The Whipple, ranks right up their with heart transplants and liver transplants it is not an easy procedure. So make sure you have skilled surgeon, someone who has preformed this surgery time and time again. Finally, the last thing I want to say if you have any doubts over surviving this procedure based on weight, throw that thought out. No Doctor in his right mind is going to risk a malpractice suit because the person did meet the weight requirement for surgery. 

 

What to bring to the hospital:

 

The following list was compiled by Whipple Warriors and their caregivers. Always check with your Doctor and Hospital to see if they allow these things on this list. Some hospitals and/or Doctors will not. Most hospitals won't allow anything in ICU.

 

-Living Will and/or Power of Attorney (POA)

-Hospital Directions & Instructions this includes any procedure papers given to you the surgeon.

-Medications, Vitamins & Enzymes you are currently taking

-List of Important phone numbers

-Extra underwear if you want to wear some. For some some women, bras can irritate our tubes and incisions.

-Slippers & Robe/PJs and/or Pillow & Blanket. Pillow comes in handy for the car ride home also, lay it on your stomach

-Laptop, Ipad, Cell Phone, Books, or Sound machine

Remember the first few days you will be drugged up so you may have a problem reading or hitting wrong keys

-Chap stick or Carmex

-Lozenges or cough drops or throat spray - don’t use until Doctor says ok, and stay away from red ones, can be mistaken for blood

-Toothbrush and/or toothpaste and hair brush

-Long socks

-Movies & DVD player or MP3 player/Music player

-Pictures of close loved ones

-Thermacare Heat Pads. if allowed, you may have a lot of back pain due to such a long surgery

-Backscratcher - Can be the stick or a designated person

-Ear Plugs - if you want to drown out all the machine sounds and noises in the hospital

-Deck of Cards, Phase 10, Uno, Skip Bo, etc for whenever you have company and feel up to it

-Extension Cord (in case there plug sockets are to far for you)

-FOR YOU PRANKSTERS: whoopee cushions are fun to use

-FOR YOU WRITERS Or anyone else who uses one: Audio Recorder & Batteries

Write about your experience, there is medical need for our “stories” for awareness purposes, the more the better, or just use it for therapy or to remind yourself of things, or get the nurses stories, etc

-Tampons or pads as the surgery can cause some Women to have a period even if it is not expected.

 

This information can be downloaded at:What to Bring to the Hospital

What do some people's Whipple incision look like?

 

There may be a variety of approaches your surgeon may take but the typical 3 incisions are Chevron, Midline and Laparoscopic incisions.  From some of our Whipple Warriors, here are pictures of these 3 incisions.

 

“And I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means I survived.” - Chris Cleave

When leaving the doctors office for a follow up, I ran into a nun I had known. I told her what had happened to me and raised my shirt to show her my scar. She immediatleytouched the scar and said, "Your scar is beautiful because that's how he saved you!" Thank you Sister Janet Findley for changing my whole lookout regarding what I now think of my beautiful scar. I wear it proudly!- An Anonymous Whipple Warrior. 

 

 

 

 

 

 

 

 

 

Why does everyone keep telling me to walk, walk, walk after surgery?

 

Question: Walking After Surgery?

I was just thinking why is it so important to start walking soon after surgery, for example, a burst appendix? I've heard that doctors and nurses stress walking after surgery. Isn't the patient still in a lot of pain and they probably feel weak. Shouldn't they rest or does the walking do something special to help the body recover after surgery? I am just curious as to why that is stressed since reading an old book when one of the characters had his appendix out and he was in the hospital for a longer time and the walking was not stressed, mainly rest. And no the character was not old either...the book was set in the early 1900s I think. Thanks in advance.

Answer:

Yes, thinking on this subject has changed considerably since the early 1900's. We are now far more emphatic about getting the patient out of bed (OOB) and moving around after surgery, and that is largely to do with concern about blood clots, but it is also because moving helps with just about all areas of recovery.

Here is a fun little med student mnemonic regarding the causes of fever in post-op days, roughly correlated with the number of days after surgery: the five Ws. Wind, water, wound, walking, wonder drugs. Three of these are definitely helped by getting out of bed.

Wind: the lungs can partially collapse after surgery, causing something called atelectasis. Getting OOB helps expand the lungs.

Water: the urinary system can be affected by both the shock of surgery and by anesthesia. Urinary retention is bad for you. Also, almost everyone gets a Foley catheter during any surgery involving general anesthesia, which also can lead to retention as well as offering an entryway for bacteria causing a UTI. Getting OOB helps with this because it helps get everything moving again, and a patient who is OOB is more likely to want to use the bathroom themselves.

Wound: can become infected. This one's not really affected by OOB.

Walking: a DVT (deep vein thrombosis or clot) can form with stasis (sitting or lying still). This is also why they advise you to get up and walk around during long plane trips. Getting OOB, again, helps.

GI Motility: Walking helps kick start the intestines also after surgery TOO


(source:http://answers.yahoo.com/question/index?qid=20080216233009AA2jo3q)

 

It is so hard to keep track of medications.  I can't list all the medications that I am taking and the doses.  Is there something that can help with that?

 

Having a list of all your medications in one place helps you, your doctors and any healthcare worker take good care of you.  My Medicine List™ can be filled out electronically and saved on your computer.  You can print it out and carry it with you in your wallet.

 

How long will it take to recover from surgery?

 

Many Warriors are told that it takes about 6 weeks to recover from the surgery.  One Warrior's surgeon told her that it takes about 1 month for every hour of surgery to recovery.  A lot of Warriors agree with this "gauge" for whipple surgery recovery.  If you have a 6 hour surgery you may feel more like yourself around 6 months later.  Most Warriors feel it takes a year to recover and adjust to how your system works.  Remember everyone recovers at their own pace - some quicker and some slower.  If you have any concerns on your recovery always speak with your doctor.

 

What questions should I ask my surgeon about a Whipple operation?

 

The Whipple operation is a very complex operation and staging of the patient and outcome of surgery is very dependant on the experience of the surgeon in treating the pancreatic cancer. Outcome research studies in Maryland, New York and elsewhere has suggested that best outcomes from the Whipple operation is dependant on the experience of the surgeon with this operation.An open and frank discussion with your physician may help you make appropriate choices regarding your therapy. The following are some of the question that may

  • How many pancreatic cancers are operated at your hospital on a yearly basis?

  • How many Whipple operations have you done?

  • How many Whipple operations do you do a year?

  • What are the complications in your hands of a Whipple operations?

  • What is the death rate of the Whipple operation at your institution and in your hands?

  • How many pancreatic cancer patients do you treat per year?

  • What is the average length of hospital stay of the patients that you have treated in the past?

 

source: Whipple Operation

 

How long does the NG tube stay in following surgery?

 

The NG tube usually stays in 3 to 5 days following surgery.  The NG tubes suctions secretions out of your stomach until your stomach and bowel functions begin.  You will not be able to eat or drink while the NG tube is in.

How to Care For A Jackson-Pratt Drain: 

(JP)(source:http://www.cc.nih.gov/ccc/patient_education/pepubs/jp.pdf)

The Jackson-Pratt (JP) drain is a special tube that prevents body fluid from collecting near the site of your surgery. The drain pulls this fluid (by suction) into a bulb. The bulb can then be emptied and the fluid inside measured. At first, this fluid is bloody. Then, as your wound heals, the fluid changes to light pink, light yellow, or clear. The drain will stay in place until less than 30 cc (about 2 tablespoons) of fluid can be collected in a 24-hour period. Caring for the JP drain is easy. Depending on how much fluid drains from your surgical site, you will need to empty the bulb every 8 to 12 hours. The bulb should be emptied when it is half full.

  • Before you are discharged from the hospital, your nurse will show you how to:

  • Empty the collection bulb

  • Record the amount of fluid collected

  • Squeeze the bulb flat and plug so that the suction works again

  • Keep the drain site clean and free of infection

  • How to empty the drain: 1. Wash your hands well with soap and water. 2. Pull the plug out of the bulb. 3. Pour the fluid inside the bulb into a measuring cup. 4. Clean the plug with alcohol. Then squeeze the bulb flat. While the bulb is flat, put the plug back into the bulb. The bulb should stay flat after it is plugged so that the vacuum suction can restart. If you can’t squeeze the bulb flat and plug it at the same time, use a hard, flat surface (such as a table) to help you press the bulb flat while you replug it. 5. Measure how much fluid you collected. Write the amount of drainage, and the date and time you collected it, on the JP drainage chart at the end of this document. 6. Flush the fluid down the toilet. 7. Wash your hands.

  • How to care for the skin and the drain site 1. Wash your hands well with soap and water. 2. Remove the dressing from around the drain. Use soap and water or 0.9 percent normal saline.  3. Use a cotton swab to clean the drain site and the skin around it. 4. Clean this area once a day. 5. When the drain site is clean and dry, put a new dressing around the drain. Put surgical tape on the dressing to hold it down against your skin. 6. Place the old dressing into the trash. If it is bloody, wrap it in a small plastic bag (like a sandwich bag). 7. Wash your hands.

  • Complications Sometimes, a large amount of fluid may leak from around the drain site, making the gauze dressing completely wet. If this happens, use soap and water to clean the area.

  • Verify that the bulb drain is secured and “flat” to provide the needed suction.

  • Another potential side effect is the development of a clot within the drain. This appears as a dark, stringy lining. It could prevent the drainage from flowing through the tube.

  • Be sure to notify your doctor if either of these complications occurs.

  • Watch the skin around the drain for these signs of infection: ■ increased redness ■ increased pain ■ increased swelling ■ fever greater than 101 ºF ■ cloudy yellow, tan, or foul-smelling drainage Report any of these symptoms to your doctor as soon as possible.

                                 

 

Nutrition and Diet

 

 

What should I eat after my Whipple Surgery?


Most patients are required to eat a meal before leaving the hospital. The intestines usually need at least 2 to 7 days for them to be ready to move foods after surgery. The best indication that the intestines have become mobile after surgery is the passing of gas. Once the digestive system is ready to handle food, the patient is then placed on a titrated diet going from liquid to regular before discharge.

It is common for the patient to experience nausea. This can be caused by medications and the changes in digestion. There are many anti-nausea medications on the market and also some medications that can move the foods out of the stomach faster which can result in decreasing
the nausea. If the nausea is causing the patient to avoid eating or drinking, it is advised to call the physician. Dehydration can also contribute to nausea so it is important for the patient to consume the recommended amount of fluid per day.

Once home, all digestive problems should be brought to the physician’s attention as this may indicate a possible complication.

Since the Whipple surgery has changed the anatomy of the digestive system, certain changes are necessary in eating habits. During the immediate post-operative period it is best for the patient to eat several small frequent meals throughout the day. Many people call this method of eating, “Grazing”.

Along with grazing it is important to keep fluid intake to at least 6 - 8 glasses of clear liquid a day. The Whipple patient can enjoy coffee and tea but it should be limited to no more than 4 cups per day. Studies have shown that beverages containing caffeine cause dehydration when more than 4 cups are consumed.

Whipple patients may feel full faster than they did before surgery. It is essential to make sure meals and foods consumed are nutrient dense. Foods such as Potato chips are considered “Empty” calories. These are foods that will take up room in your system and do have calories but do not have much nutritional value.

Drinks such as Ensure and the like are a good source of valuable nutrition and liquid. These drinks provide the proper amounts of protein, fats and carbohydrates required for a meal replacement.

Patients who have had a Whipple will sometimes have problems digesting high fat meals and snacks. It is recommended to follow a long term low fat diet which consists of 40-60 grams of fat a day. Please check with your dietician or physician for the amount of fat you can consume daily for your individual body.

Dumping Syndrome is common in Post Whipple patients. The symptoms of Dumping Syndrome are: cramping, diarrhea, flushed skin, dizziness/lightheadedness, weakness, nausea, and vomiting. This usually occurs within 2 hours of eating a meal. It is caused when foods and gastric juices from your stomach move to your small intestine in an uncontrolled, abnormally fast manner. It will usually resolve but can become chronic.  Please discuss with your dietician or physician if you have symptoms.  Here is some additional information available to download:  Gastric Dumping and Diet

A fresh post-operative patient’s needs are different from a patient who has been out of surgery for 3 months. The Whipple Diet consists of 2 phases and meets the needs of patients from the day of discharge and beyond.

 

Phase I:

This phase is for those who have just been released from the hospital and are just acclimating to their new post Whipple anatomy. Remember to eat the foods listed below in frequent small quantities throughout the day. New foods should be introduced freely as the patient desires.

  • Simple easy to digest Proteins: Boiled chicken breast, turkey breast, low fat ham, white fish. (Eat white meats only from poultry as the dark meat contains a higher percentage of fat), eggs.

  • Soft Diet foods: Mashed potatoes made with fat free milk and a small amount of a butter substitute, white rice, noodles.

  • Grains: Bread, toast, crackers

  • Drinks: High calorie drinks such as Ginger-ale and Coke (To lessen the fizz, pour the drink over ice and stir with a spoon), Fruit Juices such as apple juice and Ensure.

  • Dairy: (All low fat) Yogurt, pudding, ice cream, coffee creamer and milk.

Soups: Chicken soup with vegetables and lentil soup with vegetables. Add more soups as desired, however, it is recommended to avoid spicy soups at this time.

Vegetables: Cooked carrots, green beans and corn as tolerated.

Condiments: low fat mayonnaise, low fat salad dressings, mustard, honey mustard, ketchup. 

Keep spices bland during Phase I.

Simple Sugar: Concentrated sugars such as maple syrup and jams can stimulate the bowel and possibly contribute to Dumping Syndrome. (Described above). Limit simple sugars to a small quantity until tolerated.

Fresh Fruit: Cantaloupe, apples, pineapple, banana and grapes. Add more as tolerated.


Phase I Sample Day:

7:00 am-Breakfast: Scrambled eggs, toast with a scant amount of strawberry jelly and coffee with low fat creamer and one teaspoon of sugar.

9:00 am- Morning snack: Yogurt

11:00 am- Late Morning snack: Apple slices

1:00 pm Lunch: ½ Turkey sandwich made with white bread, a small amount of fat free mayonnaise and a small amount of mustard. 1 small cup of Chicken Soup.

3:00 pm- Afternoon snack: 4 Saltine Crackers and a Chocolate pudding.

5:00 pm- Late afternoon snack: Sliced Cantaloupe and fat free cottage cheese.

7:00 pm – Dinner: Boiled Chicken breast, mashed potatoes and green beans.

9:00 pm – Late Snack: Fat free Vanilla Ice Cream

This is an example of ‘grazing’. Drink between meals and a small amount during meals.

 

 

Phase II

This phase builds on phase I. The patient is to add foods that sound pleasing and are well tolerated. Foods that stimulate the appetite and have pleasant aromas are usually well received. Keep adding new foods that are low fat and nutrient dense. Fluid intake is important for all patients at all times.


Tips and Recommendations:

  • When eating meals, take small sips of fluid. Drinking large quantities of fluid prior to and during a meal will fill the stomach and not leave room for the nutrient dense food.

  • Drink freely between meals

  • Keep exercising as this stimulates the appetite and keeps the intestines moving to lessen cramping and gas.

  • If you are a Diabetic, consult a dietician prior to starting this or any diet.

  • Take a multivitamin

  • Ask your physician to test your nutrient levels such as: Vitamin B12, Vitamin D, Magnesium, Calcium and the fat-soluble vitamins A, D, E, and K. Have the physician recommend the proper dosages of the vitamins you may need.

  • Avoid alcohol until approved by a physician

  • Keep a food journal. Keep a list of the foods you consume and include the time and quantity. If you should have Dumping Syndrome within 2 hours of eating, you have a log available to see what new foods may have caused it.  There is a food log available for you to download at:Food Diary

**This diet is a guide and should be discussed with your physician or dietician prior to starting.

I was told I have gastric dumping, how should I eat?

 

The symptoms include bloating, nausea, diarrhea, dizziness, weakness, sweating, and rapid heartbeat. They may occur 30 to 60 minutes after eating a meal and then again, 2 to 3 hours after eating. 

The early symptoms are caused when concentrated sugar passes too rapidly from the stomach into the intestine. The body dilutes this sugar mixture by bringing fluid from body tissues into the intestine, giving a sense of fullness, cramping, and occasionally, diarrhea. The loss of water from tissues can produce a temporary drop in blood pressure, with resulting weakness and faintness.

The later symptoms are caused by the rapid absorption of sugar into the bloodstream, which raises the amount of blood sugar. A high level of blood sugar signals the body to produce more insulin. The excess insulin, in turn, drives blood sugar levels down. The low blood sugar (hypoglycemia) produces the weakness, hunger, and rapid heart rate that may occur about two to three hours after eating. This diet is really a regular diet with frequent small meals and reduced simple sugars.

Gastric Dumping and Diet Recommendations  

(Source: http://gicare.com/diets/anti-dumping-post-gastrectomy-diet) 
The symptoms include bloating, nausea, diarrhea, dizziness, weakness, sweating, and rapid heartbeat. They may occur 30 to 60 minutes after eating a meal and then again, 2 to 3 hours after eating. 
The early symptoms are caused when concentrated sugar passes too rapidly from the stomach into the intestine. The body dilutes this sugar mixture by bringing fluid from body tissues into the intestine, giving a sense of fullness, cramping, and occasionally, diarrhea. The loss of water from tissues can produce a temporary drop in blood pressure, with resulting weakness and faintness. 
The later symptoms are caused by the rapid absorption of sugar into the bloodstream, which raises the amount of blood sugar. A high level of blood sugar signals the body to produce more insulin. The excess insulin, in turn, drives blood sugar levels down. The low blood sugar (hypoglycemia) produces the weakness, hunger, and rapid heart rate that may occur about two to three hours after eating. This diet is really a regular diet with frequent small meals and reduced simple sugars. 
Nutrition Facts 
Depending upon individual tolerances and food selection, the Anti-Dumping or Post-Gastrectomy Diet is adequate in all nutrients according to the National Research Council’s Recommended Dietary Allowances (RDA). Some patients may become deficient in iron, calcium, folate, and B-12. The physician may prescribe vitamin/mineral supplementation and B-12 injections. 
Special Considerations 1. Eat six small meals daily to avoid overloading the stomach. 2. Limit fluids to 4 oz (1/2 cup) during mealtimes. This prevents the rapid movement of food through the upper gastrointestinal tract and allows adequate absorption of nutrients. 3. Drink liquids 30 to 45 minutes before eating and 1 hour after eating, rather than with meals. 4. Rest or lie down for 15 minutes after a meal to decrease movement of food from the stomach to the small intestine. This decreases the severity of symptoms. 5. Avoid sweets and sugars. They aggravate the dumping syndrome. 6. Avoid very hot or cold foods or liquids which may increase symptoms. 

 
 
Food Groups 
 
Group Recommend Avoid 
Milk & milk products (2 or more cups daily) 
as tolerated: butter-milk; low fat, skim, or whole milk; creamed soups; low calorie pudding; plain or low-calorie, artificially sweetened yogurt; cheese 
cocoa mixes; ice cream; malted or chocolate milk; sweetened custard and pudding; sweetened, fruited, or frozen yogurt; milkshakes 
Vegetables (3 or more servings daily) 
all none 
Fruits (2 or more servings daily) 
fresh fruit, fruit canned in natural juice, unsweetened fruit juice 
dried fruits, canned or frozen fruits in syrup, sweetened juice 
Breads & grains (4 or more servings daily) 
crackers, pasta, plain breads and rolls, pretzels, rice, unsweetened cereals 
sugar-coated cereals (including granola), doughnuts, sweet rolls 
Meats & meat substitutes (5 to 6 oz daily) 
eggs, seafood, beef, poultry, pork, peanut butter 
none 
Fats & oils (servings depend on caloric needs) 
butter, margarine, oils, salad dressings 
none 
Sweets & desserts (servings depend on caloric needs) 
artificial sweeteners, lowcalorie jelly, low-calorie gelatin, low-calorie popsicles 
popsicles, cakes, pies, cookies, jellies, jams, gelatin, high sugar desserts, sherbet 
Beverages (limit fluid with meals to 4 oz per meal) 
sugar-free beverages, water regular soft drinks, sugared drink mixes, lemonade, Kool Aid, Gatorade, sugared ice tea, Snapple or similar 
drinks 
Sample Menu 
Breakfast Lunch Dinner 
§ unsweetened orange juice 1/2 cup § poached egg 1 § toast 1 slice § margarine 1 tsp § low-calorie jelly 1 tsp § sugar substitute § salt/pepper 
§ beef patty 3 oz on bun mayonnaise or ketchup 1 Tbsp § broccoli 1/2 cup § margarine 1 tsp § skim milk 1/2 cup § salt/pepper 
§ chicken breast 3 oz § mashed potatoes 1/2 cup § green beans 1/2 cup § margarine 2 tsp § coffee 1/2 cup § non-dairy creamer § sugar substitute § salt/pepper 
Mid-Morning Snack Mid-Afternoon Snack Evening Snack 
§ unsweetened cereal 1/2 cup § skim milk 1/2 cup 
§ bread 1 slice § turkey 1 oz mayonnaise 1 Tbsp lettuce § low-cal. pudding  
§ cottage cheese 1/4 cup § fresh peaches 3/4 cup 

 

Post Whipple diet: 

Nutrition Facts:

Depending upon individual tolerances and food selection, the Anti-Dumping or Post-Gastrectomy Diet is adequate in all nutrients according to the National Research Council’s Recommended Dietary Allowances (RDA). As a result of surgery, poor absorption of nutrients, vitamins, and minerals may occur to a significant degree. Some patients may become deficient in iron, calcium, folate, and B-12. The physician may prescribe vitamin/mineral supplementation and B-12 injections.

 

Special Considerations:

  1. Eat six small meals daily to avoid overloading the stomach.

  2. Limit fluids to 4 oz (1/2 cup) during mealtimes. This prevents the rapid movement of food through the upper gastrointestinal tract and allows adequate absorption of nutrients.

  3. Drink liquids 30 to 45 minutes before eating and 1 hour after eating, rather than with meals.

  4. Rest or lie down for 15 minutes after a meal to decrease movement of food from the stomach to the small intestine. This decreases the severity of symptoms.

  5. Avoid sweets and sugars. They aggravate the dumping syndrome.

  6. Avoid very hot or cold foods or liquids, which may increase symptoms in some patients.

 

Food Groups

Group

Recommend

Avoid

Milk & milk products
(2 or more cups daily)

as tolerated: butter-milk; low fat, skim, or whole milk; creamed soups; low calorie pudding; plain or low-calorie, artificially sweetened yogurt; cheese

cocoa mixes; ice cream; malted or chocolate milk; sweetened custard and pudding; sweetened, fruited, or frozen yogurt; milkshakes

Vegetables
(3 or more servings daily)

all

none

Fruits
(2 or more servings daily)

fresh fruit, fruit canned in natural juice, unsweetened fruit juice

dried fruits, canned or frozen fruits in syrup, sweetened juice

Breads & grains
(4 or more servings daily)

crackers, pasta, plain breads and rolls, pretzels, rice, unsweetened cereals

sugar-coated cereals (including granola), doughnuts, sweet rolls

Meats & meat substitutes (5 to 6 oz daily)

eggs, seafood, beef, poultry, pork, peanut butter

none

Fats & oils
(servings depend on caloric needs)

butter, margarine, oils, salad dressings

none

Sweets & desserts
(servings depend on caloric needs)

artificial sweeteners, low-calorie jelly, low-calorie gelatin, low-calorie popsicles

popsicles, cakes, pies, cookies, jellies, jams, gelatin, high sugar desserts, sherbet

Beverages
(limit fluid with meals to 4 oz per meal)

sugar-free beverages, water

regular soft drinks, sugared drink mixes, lemonade, Kool Aid, Gatorade, sugared ice tea, Snapple or similar drinks

 

 

(Source:http://gicare.com/diets/anti-dumping-post-gastrectomy-diet)

I am seriously confused about this anemia/iron thing. Is anyone else!


Anemia and iron deficiency are actually two different, but related, conditions. Anemia is defined by having a low hemoglobin (or hematocrit). There have been 3 kinds of anemia mentioned by the members of the Whipple Survivor group

  1. Iron Deficient Anemia due to lack of iron absorption

  2. Pernicious Anemia due to lack of B12 absorption

  3. Folate Deficiency Anemia due to lack of B6 absorption

The signs of Iron Deficient Anemia are low Ferritin (circulating iron levels) and low Hemaglobin (Hb). Strictly speaking you aren't anemic until it affects your Hb, but if your Ferritin levels are low then it is a sign that you are heading towards anemia and it is better to treat before your Hb drops. In Iron Deficient anemia you produce fewer red blood cells and they are smaller than normal, with less Hb. Hb carries oxygen to all your cells and means you be tired and breathless on exertion. Pernicious anemia is likely to occur if you lost some of your stomach when you had your Whipple. B12 is absorbed in the large bowel, but it needs Intrinsic factor (IF) which is produced by cells in the stomach and this means that some of us may not produce enough IF and become deficient in B12 even if we eat enough. That is when B12 injections are needed to treat pernicious anemia. Folate deficiency doesn't usually cause the neurological symptoms that Pernicious anemia causes, however, it does cause fatigue and paleness. Something to keep in mind, you can be iron deficient and technically not anemic or anemic but not iron deficient. Iron absorption is thought to mostly occur in the duodenum which gets removed during a Whipple. However not everyone seems to have the problem with anemia or iron deficiency because iron can be absorbed through other parts of the body besides the duodenum. Some good information can be found in the website Iron and Iron Deficiency.

Here is a good reference onIron and Iron Deficiency.

Remember always seek medical advice from your doctor.

 

I have iron issues but I don’t want become constipated!


As for avoiding constipation some people are taking a liquid form of iron which they find easier to tolerate than the tablets. Some people get to the point where they need Iron Infusions (Iron directly via IV), but this does carry its own problems. You will need to work with your doctor concerning any issues or side affects you may be having.

 

Can I have alcohol after having the Whipple?

 

The best advice is to check with your doctor concerning alcohol consumption. Many Whipple patients are told they can drink alcohol occasionally. Remember, everyone is an individual on this post surgery journey so it is best to check with your doctor.

 

 

I am a bit frazzled about feeding my family after surgery - suggestions?

 

Some fellow warriors have suggested cooking up meals your family likes and freezing them in containers that they can just take out and either cook in the over or in the microwave.  Make sure you put cooking instructions on the top of the containers to reduce the questions later. Another option is your Church. A lot of churches provide meals to their members so reach out to them and ask.  Lastly, a couple of fantastic sites to set up meal deliveries to your family are Take them a meal or Meal Train.  We aren't promoting these particular sites but other warriors have used them and have been quite pleased.  

How do I know if I need enzymes?

 

Some of the indicators that you may need to use enzymes are:

  • Feeling of indigestion

  • Cramping after meals

  • Large amounts of Gas

  • Foul smelling gas or stools

  • Floating stools or greasy/fatty stools

  • Frequent stools

  • Loose stools or diarrhea

  • Unexplained weight loss

You need to talk with your GI doctor if you are having any of these issues to determine if you need to start using enzymes.

A good reference to taking pancreatic enzymes can be found at:Adjusting Your Pancreatic Enzymes

For CREON users there is a good reference to dosage amounts that can be found at: Dosing Guide

There are a couple of good videos to watch concerning Exocrine Pancreatic Insufficiency (EPI):

 

Nutrition and Pancreatic Enzymes for Side Effect Management and Exocrine Pancreatic Insufficiency

What are the possible after effects of having the Whipple?

 

Some Patients report feelings of anxiety and depression after having the Whipple. If you are not feeling yourself, please report it to your doctor immediately. Many Whipple patients end up on short term anti-depressants. 

 

I had the Whipple but now I fear the mass will return,does anyone else have these fears?


The answer to your question is YES!!! This topic has been discussed many times on the Whipple Surgery Survivor FaceBook Page. It is what most of us feel post-surgery. Once you have something like this it is always in the back of your head. The task is to not let it rule you and to put it back in its ugly box when you think of it. We all try to live in the moment. Also, as many of us have had, you are probably going through a bit of Post Traumatic Stress Disorder. You don't need to have gone to a physical war to have flashbacks, thoughts of what if, re-living your surgery, sleeping difficulties etc.  You may find interesting information under the archives for the Twitter chat at: Post-Tramatic Stress Syndrome 

I have a follow-up scan coming up because they thing they found something. I am panicking!

 

We know it is a common thing to say – it could be nothing so don’t worry. Easier said than done isn’t it. TRY to just take it one minute at a time and tell yourself that RIGHT now, you don’t have anything to worry about and if something does come, you will handle it just as you did when you were “Whipped”.

Post Whipple Recommended Blood Test(s)

Reminder: - Be sure to tell your doctor about all nonprescription and prescription medications that you take as the medications could affect the results of a blood test. The tests listed here are just recommendations given by post-whipple patients and does not mean you need to have these done.

You should always work with your doctor and have the appropriate blood work based on your own medical history done.

  • Comprehensive Metabolic Panel (automatically includes Potassium/Glucose/Protein/Albumin/Calcium/Alkaline Phosphotase/Bilirubin/AST/AST) TSH/T4/T3 (Thyroid)

  • Hemoglobin A1C (reflects glucose control over past few months)

  • Ferritin (Iron), Vitamin D, Vitamin B12: Since the duodenum is the major part of the small intestines that absorb Iron and Vitamin D, it is possible to have a decrease in these because our Duodenum has been removed

  • Vitamins: A, E, Vit D including D, K. These are the fat soluble vitamins. These require enough pancreatic enzymes to be used by the body. 

  • Magnesium Phosphorus

  • CBC (automatically includes Hemoglobin and Hematocrit)

  • Pancreatic enzymes. 

                                General Information

 

I can't afford my medications now what?

 

There are several organizations that you contact if you cannot afford your medication. Right now these are mainly US based organizations. We plan to add links to organizations in other countries as we become aware of them.

  1. Clinic of Angels - this non-profit organization helps chronically ill patients by providing financial resources to help in their medical care.

  2. NeedyMeds-  this non-profit organization is an information resource devoted to helping people in need find assistance programs to help them afford their medications and costs related to health care.

  3. Bridges to Access - this organization offers non-oncology medines - at no cost - to patients that qualify

  4. Discount Drug Card Programs - For additional ways to obtain free or low-cost prescription drugs, try the following discount drug card program

  5. Partnership for Prescription Assistance- helps qualifying patients without prescription drug coverage get the medicines they need through the program that is right for them. Many will get their medications free or nearly free

  6. GSK Access- provide GSK prescription medicines to qualified patients who are enrolled in a Medicare Part D Prescription Drug Plan and need help paying for treatment.  The medicines covered by GSK:medicine list

 

I recently had my Whipple and now my hair is falling out - why?

 

Many Whipple Warriors had issues with their hair falling out after surgery.  There are many reasons this can be happening.  Among some of the reasons other Warriors have hair loss is:

  1. The Stress of the surgery itself.  Physical stress can cause hair loss.

  2. The anthesia used during surgery

  3. Side effect of a medication(s)

  4. Vitamin Deficiencies. Some Whipple Warriors reported that their hair fell out in clumps due to  severe Vitamin A deficiency due to poor fat absorption.  A good source for Vitamins to take is at: "Vitamins to Prevent Hair Loss

In general this is calledTelogen Effluvium

What are some tips to overcome nausea and vomiting?

It is not uncommon to experience nausea and vomiting as a side effect of cancer treatment.   Nausea and/or vomiting may occur right after treatment, several days later or possibly not at all.  If nausea or vomiting becomes severe, talk to the doctor.

  • If food smells disagreeable, stay out of the kitchen/ house while food is prepared.  Using a grill or boiling bags can help diminish cooking smells.

  • Rooms that are too warm or stuffy may make nausea worse.

  • Eat small, frequent meals of easily digestible food, such as rice, broth and soda crackers.  A very full stomach can contribute to feelings of nausea.

  • Keep a little bit of food in your stomach at all times.  An empty stomach can contribute to feelings of nausea.

  • Try crackers or dry toast, especially if it has been several hours since your previous meal or snack.

  • Try cool foods.  Often, they have fewer odors and are more easily digested.

  • Eat on the days that chemotherapy is given, but do not eat favorite foods when nauseated.

  • Avoid greasy, spicy, hot or very sweet food.

  • Slowly sip cold, clear juices, ginger ale or other carbonated beverages.

  • Restrict fluids with meals but be sure to drink plenty of fluids between meals.

  • Try peppermint or ginger tea to reduce nausea.

  • Hard candy flavored with peppermint, wintergreen or lemon can help, especially if you have unpleasant tastes in your mouth.

  • Try high calorie medical nutritional supplements to help get calories and nutrients without filling up.*

  • Try relaxation techniques.

  • Wear loose clothing. Many people find that this helps reduce feelings of nausea.

  • Talk to the doctor about anti-emetic (anti-nausea) medications. 

(Source: http://www.pancan.org/section_facing_pancreatic_cancer/learn_about_pan_cancer/diet_and_nutrition/Nausea_vomiting.php)

 

It has been recommended by fellow Warriors to take your anti-nausea medications a 1/2 hour before dinner to get a jump on the nausea.

 

It is so expensive for travel and lodging when I have to get my medical care in another city.  Is there anyhing that can help reduce my expenses?

 

There are many resources available to help with travel and lodging costs and we have listed a few here. Please keep in mind, these are US based organizations right now.  We plan to add links for other countries as we become aware of them.

 

 

Assistance with Lodging:

Healthcare Hospitality Network-  nationwide professional association of nonprofit organizations that provide lodging and support services to patients and families

American Cancer Society Hope Lodge- offers patients and caregivers a free, temporary place to stay when treatment is in another city

Miracle House - provides housing and support services to families and friends of those living with AIDS or Cancer, as well as the caregivers

Joe's House- online nationwide lodging resource for Cancer patients and their families who must travel away from home for medical treatment

 

Assistance with Travel:

ACA - The Air Care Alliance- nationwide league of humanitarian flying organization with volunteer pilots to provide patient transport

Angel Flight- volunteer pilots provide transportation for medically related needs

National Patient Travel Center- provides long-distance medical transportation

Corporate Angel Network- using empty seats on corporate aircrafts flying on routine business, Cancer patients fly free

Angel Bus - Motor Coach, Bus, Ground Transportation for Patients- providing ground transportation to patients in need

Angel Airlines for Life - strives to provide charitable airline tickets for distance care

 

 

It is so hard to keep track of medications.  I can't list all the medications that I am taking and the doses.  Is there something that can help with that?

 

Having a list of all your medications in one place helps you, your doctors and any healthcare worker take good care of you.  My Medicine List™ can be filled out electronically and saved on your computer.  You can print it out and carry it with you in your wallet.

 

What is a good way to explain the difference between empathy and sympathy?

 

There is a wonderful video that has an excellent explanation about the difference between empathy and sympathy.  http://www.youtube.com/watch?v=1Evwgu369Jw

 

DISCLAIMER

 

CALL 911  IF YOU FEEL YOU HAVE ANY TYPE OF EMERGENCY!

 

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Hospitalization and Surgery