Need advice for dads treatment

Taka01~So sorry 2 read about Dad's post-op diet & death

Dear “Taka01”

First let me say how sorry I am to know that your father was taken from you at his “young age” of only 64.  Believe me, this is the first letter I have read from a family member whose Dad has suffered the way your father did.  And to say, right off, I have never heard of any surgeon starting a patient out on “peaches and other fruits” right after your father passed the Barium Swallow test.

By way of information, I have been monitoring this site for now 15 years since my own husband was diagnosed at the age of 65 with Adenocarcinoma at the Gastroesophageal Junction—Stage III (T3N1M0).  He had successful tri-modal treatment which consisted of neoadjuvant (pre-op) chemo/radiation and then an Ivor Lewis Minimally Invasive Esophagectomy aka MIE.  The MIE surgery was performed by Dr. James D. Luketich at the University of Pittsburgh Medical Center on May 17, 2003.  Dr. Luketich pioneered the MIE in the mid 90s. 

Now “Taka”, please know that I am only speaking personally, and not as one having any kind of medical degree.  However, I’ve been through all the anxieties of learning that my husband had Esophageal Cancer.  And although the stats are not as favorable as we would like, there are many success stories.  For that reason, I feel I must try to encourage others who are equally devastated as we were when we first heard those words, Esophageal Cancer.

That said, I will answer your specific questions and provide some references below my name.  And just for “full disclosure” I was diagnosed with a terminal cancer in November of 2012, Peritoneal Carcinomatosis/Ovarian Cancer Stage IV.  So I speak both as a caregiver to my husband and as a Stage IV Cancer patient myself.  It is with great sadness that I write to you tonight.  Actually, it’s the wee hours of the morning here in the Eastern Standard time zone in Virginia Beach, Virginia.  I note that as I am writing this letter, it is 6:43 PM in Hawaii—so you may well read this letter before retiring for the night.

You have asked specifically about diet after an Esophagectomy, so I have included the UPMC web link that outlines one’s post-esophagectomy diet.  Peaches and other fruits are NOT on the UPMC list, nor have I ever heard of anyone else who had this as their first foods immediately after passing the Barium Swallow test.

You state:  “my question is,

1.     do pt’s who endure a major surgery where they reconstruct you esophagus do pt’ Eat orally right after?

NOT any that I have ever heard of or read about!  In all the references outlined below my name, a LIQUID DIET is specified first.  This is the first time I have ever heard of starting out immediately on SOLID food as opposed to LIQUID.  Fruit will be introduced further down the line as noted in the UPMC guideline. 

My husband followed the UPMC diet as outlined in the reference below.  Moreover, we just had a friend (EC Stage III) who had his Esophagectomy on May 19, 2018.  His surgeon did not allow him to eat anything for 21 days.  So my friend has just begun his post-esophagectomy diet relative to “real food” of any kind.  He has just had his feeding tube removed.

My husband was on a feeding tube for 3 weeks after his surgery.  Naturally, he lost a lot of weight and in his case his weight did not stabilize till about 9 months afterwards. 

2.     Is there not a post esophagectomy diet?

YES there is a definite post esophagectomy diet so that the problems your dad encountered would not occur.  There are always two things all EC patients will learn, following their surgery, no matter the type.  They will learn to sleep elevated so that the gastric acids will not come all the way back up to their throat and cause severe acid reflux.  And secondly, they will all have to adapt to a new way of eating.  The foods—what type—how much and how often will for many be “trial and error” for several months.  But eventually each one will learn what foods agree and which do not agree with them.  Often in the beginning a person cannot tolerate certain foods, but further along, they will be able to consume that same food without difficulty. 

3.     Is it not a slow process to reintroduce the body to swallowing solid foods? 

YES—a very slow process.  Slow in the sense that a post-esophagectomy patient now has a “limited intake” capacity.  Different patients will acclimate at different intervals, but all that I read about begin with a liquid diet as opposed to peaches and other fruits. 

You mention problems with blood clots due to the IVs.  Did your dad not have a medi-port implanted in his upper chest area during all that period of chemotherapy?  Prolonged treatments place severe strain, wear and tear on one’s veins.  The first thing my husband’s oncologist ordered prior to the pre-op chemo/radiation was implantation of a medi-port.  I also have one.  The first thing I asked for when my chemo was to start was a medi-port, which my oncologist readily agreed would be most advantageous.

Moreover, with bowel problems, I can understand your horror and anger as you watched the nurse continue to inject water into your dad’s feeding tube!  I would have “yelled” at her too! 

Oh Taka I can only say once more how sorry I am for the way your dad was “treated” relative to his post-esophagectomy diet.  I can fully understand the aspiration.  My own sister died of pneumonic aspiration.  All I can say is we wish this had never happened, and if anyone reads your letter, they will certainly be made aware of the “right and wrong” way to begin a post-esophagectomy diet.  Furthermore, anyone anticipating surgery that is reading this letter, should make a copy of the UPMC diet guidelines and follow them post-surgery.  My husband’s diet consisted mainly of being on the feeding tube for extended periods of time for the first three weeks.  Dr. Luketich recommended “Osmalite” be used.  He also recommended supplemental “BOOST” to keep up his energy level once he was off the feeding tube.  Moreover, while on the feeding tube, my husband used it all during the night.  One is pretty much confined to using the feeding tube in the very beginning.  Obviously, with a new gastric tube which is so limited in capacity, there is no way one can regain energy without supplemental feedings.  I have included more than one reference for post-esophagectomy diets for you.  They will all follow the same pattern in essence. 

Not that my words will be comforting, in fact they will probably cause more heartache because of the post-surgical diet your dad was “subjected” to.  Please know this letter was difficult for me to try to answer, but not nearly as painful as it was for you to write us.  There’s no way, I as a stranger, can even begin to help heal your broken heart.  My heartfelt sympathies go out to everyone in your family. 

Praying that God will comfort you as only He can, I am

Loretta Marshall

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1.     https://www.medicinenet.com/script/main/art.asp?articlekey=3896

“Ileus: Obstruction of the intestine due to its being paralyzed. The paralysis does not need to be complete to cause ileus, but the intestine must be so inactive that food cannot pass through it, which leads to blockage of the intestine. Ileus commonly follows some types of surgery. It can also result from certain drugs, injuries, and illnesses. Regardless of the cause, ileus causes constipation and bloating. When one listens to the abdomen with a stethoscope, no bowel sounds are heard because the bowel is inactive. Also known as paralytic ileus.” 

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2.     http://www.upmc.com/patients-visitors/education/nutrition/pages/esophagectomy.aspx

[My note:  Please read this in its entirety.  It is very lengthy and I have only included some of the opening intro.  The guidelines are so very helpful.]

“UPMC - DIET AFTER AN ESOPHAGECTOMY

An esophagectomy (ee-soff-uh-JEK-tuh-mee) is surgery to remove the esophagus. After this type of surgery, it is common to have some problems eating for a few months.

What can I expect after surgery?

For the first few months after surgery, you may have problems such as:

Weight loss

Dumping syndrome (nausea, diarrhea, abdominal cramping, light-headedness)

Excess gas

Trouble swallowing

Your diet plan after surgery is designed to lessen your discomfort and allow you to enjoy eating.

WHAT TYPE OF DIET WILL I HAVE?

You will have several types of diet. Your diet will change slowly based on your rate of recovery and how well you can tolerate food. The amount of liquids that you are permitted to have at one time will vary based on your doctor's recommendation. In general, your diet plan will advance as follows:

Clear liquid diet, for the first few days after surgery

Full liquid diet

Soft diet

Each person tolerates food in a different way. Your doctor will advance your diet plan based upon your progress after surgery. 

How can I help myself?

Follow the tips below to make eating more comfortable and enjoyable.

To reduce discomfort

Eat small, frequent meals (6 to 8 per day). This helps you get all the nutrients you need.

Take small bites and chew your food well. This helps you to swallow and to digest your food.

Drink most of your liquids between meals. Limit liquids with meals to ½ cup (4 ounces). Limit liquids with snacks to 1 cup (8 ounces).

If you eat sweets, eat them at the end of your meal. Sweets are digested more quickly than other foods. Eating sweets first could lead to low blood sugar or hypoglycemia.

Choose foods that are soft and moist because they can be easier to digest. Avoid gummy foods, such as bananas, untoasted bread and bread products.

Sit up straight when you eat. This way, gravity can help food move through your digestive tract. After you eat, continue to sit for 30 to 60 minutes.

Eat your last meal or snack at least 2 to 3 hours before you go to bed.

Avoid the following foods and beverages if they produce reflux:

Alcoholic drinks

Caffeine

Citrus and tomato products

To avoid gas

Do not use a straw, chew gum, or smoke because these activities make you swallow air. Keeping extra air out of your digestive tract helps to reduce gas.

Avoid the following foods that produce gas:

Broccoli

Cabbage

Cauliflower

Corn

Dried beans, dried peas

Lentils

Onions

Sodas (carbonated drinks)

Clear liquid diet

RIGHT AFTER SURGERY, YOU WILL FOLLOW A CLEAR LIQUID DIET, WHICH INCLUDES:

1.     Clear juice (apple, grape, and cranberry)

2.     Clear broth (chicken, beef, and vegetable)

3.     Flavored gelatin (such as Jell-O®)

4.     Tea and coffee

Make sure to check with your doctor for the amount of liquids you are permitted at one time.  The amount varies from patient to patient, based on your recovery from surgery. Sodas (carbonated drinks) are NOT allowed for 6 to 8 weeks after surgery. After this time, you can try sodas in small amounts. Caffeinated beverages can be introduced at this time as tolerated.  

FULL LIQUID DIET

1.     A full liquid diet contains all the liquids of the clear liquid diet in addition to:

2.     Blended yogurt (vanilla or custard style without fruit or seeds)

3.     Cream of wheat or cream of rice cereal, and grits

4.     Ice cream (no chocolate and without fruits, nuts or seeds)

5.     Frozen yogurt (no chocolate and without fruits, nuts or seeds)

6.     Instant breakfast drinks and nutrition supplements, i.e. Boost®, Ensure® (no chocolate flavors)

7.     Milk (no chocolate)

8.     Pudding (no chocolate, rice, or coconut flavored)

9.     Sherbet

10.                        Strained cream soups (NOT tomato or broccoli)

Note: Dairy products may cause diarrhea right after surgery. Dairy products include milk, ice cream, and pudding. You may need to avoid milk products at first. Then try them in small amounts as you advance your diet. You can also try products that are lactose reduced or lactose free.

SOFT DIET

A soft diet consists of bland, low fiber, lower-fat, soft foods and drinks…”

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3.     https://stanfordhealthcare.org/content/dam/SHC/programs-services/cancer-nutrition/docs/post-esophagectomy-nutrition-facts.pdf

Post-Esophagectomy Nutrition Guidelines Nutrition is very important for healing and to prevent weight loss after esophageal surgery. Remember, because of the surgery, your esophagus may not be able to move foods as easily from your mouth to your stomach. Certain foods can block the esophagus or are difficult to swallow. Some people complain of food “sticking” or have midsternal (behind the breastbone) pain. Your surgeon may ask you to avoid solid foods entirely for the first several weeks at home. The guidelines below will ensure optimal diet tolerance after surgery.

 The Diet Progression after Esophageal Surgery

 Step 1: CLEAR LIQUID DIET—Follow for ____________ days · Broth, bouillon · Clear juices (apple, cranberry, grape, etc) diluted with water, Coconut Water (no pulp), Gatorade/G2, Tea (green tea, herbal teas are best) · Jello, sugar-free Jello · Nutrition Beverages like Boost Breeze® or Ensure Clear ®

Step 2: FULL LIQUID DIET—Follow for ____________ weeks Everything on a clear liquid diet, plus: · Hot Cereal—cream of wheat, cream of rice, malt-o-meal · Milk, smooth yogurt, reduced fat smooth ice cream (vanilla, chocolate, etc), sherbet, pudding · Milkshakes and Malts (made with reduced fat ice cream and milk) · Strained or pureed smooth soups (not tomato-based) · Nutrition Beverages like Ensure®, Boost®, Orgain®, Premiere Protein®, Muscle Milk®

Step 3: SOFT SOLID DIET—Follow for ___________ weeks Everything on a clear liquid and full liquid diet, plus..”

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4.     https://medlineplus.gov/ency/patientinstructions/000294.htm

“Diet and eating after esophagectomy

 You had surgery to remove part, or all, of your esophagus. This is the tube that moves food from the throat to the stomach. The remaining part of your esophagus was reconnected to your stomach.

What to Expect at Home

You will probably have a feeding tube for 1 to 2 months after surgery. This will help you get enough calories so that you start to gain weight. You will also be on a special diet when you first get home.

Self-care

If you have a feeding tube (PEG tube) that goes directly into your intestine:

• You may only use it at night or for periods during the day. You can still go about your daytime activities.
• A nurse or dietitian will teach you how to prepare the liquid diet for the feeding tube and how much to use.
• Follow instructions on how to care for the tube. This includes flushing the tube with water before and after feedings and replacing the dressing around the tube. You will also be taught how to clean the skin around the tube.

You may have diarrhea when you are using a feeding tube, or even when you start eating regular foods again.

• If specific foods are causing your diarrhea, try to avoid these foods.
• If you have too many loose bowel movements, try psyllium powder (Metamucil) mixed with water or orange juice. You can either drink it or put it through your feeding tube. It will add bulk to your stool and make it more solid.
• Ask your doctor about medicines that may help with diarrhea. Never start these medicines without first talking to your doctor.

What you will be eating:

• YOU WILL BE ON A LIQUID DIET AT FIRST.
• Then you may eat soft foods for the first 4 to 8 weeks after surgery. A soft diet contains only foods that are mushy and do not need much chewing.
• When you are back to a normal diet, be careful eating steak and other dense meats because they may be hard to swallow. Cut them into very small pieces and chew them well.

Drink fluids 30 minutes after you eat solid food. Take 30 to 60 minutes to finish a drink.

Sit in a chair when you eat or drink. DO NOT eat or drink when you are lying down. Stand or sit upright for 1 hour after eating or drinking because gravity helps food and liquid move downward.

Eat and drink small amounts:

• In the first 2 to 4 weeks, eat or drink no more than 1 cup (240 milliliters) at a time. It is OK to eat more than 3 times and even up to 6 times a day.
• Your stomach will stay smaller than it was before surgery. Eating smaller meals throughout the day instead of 3 larger meals will be easier.”

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5.     https://www.mskcc.org/cancer-care/patient-education/eating-after-your-gastrectomy-esophagogastrectomy

“…Special Instructions for People Who Have Had an Esophagogastrectomy

If you have had an esophagogastrectomy, YOU WILL START WITH A LIQUID DIET. Once you can handle this, your doctor may suggest that you try to eat soft or moist foods. If you cough or feel like the food is getting stuck in your throat when you swallow, tell your doctor and dietitian.

During your esophagogastrectomy, the valve between your esophagus and stomach was removed. This can cause reflux, which is when you throw up or bring up foods or liquids. To prevent this, follow the guidelines below in addition to the ones above.

• Sit up straight during meals and for at least 60 minutes after you are finished.
• Wear loose-fitting clothes around your abdominal (stomach) area.
• Eat your last meal of the day at least 2 hours before your bedtime.
• Always keep the head of your bed at a 45-degree angle or higher. Use a wedge to keep your upper body and head raised. You can buy a wedge at a surgical supply store.

If you are having a hard time swallowing, eat soft, moist foods. Also, be sure to tell your doctor, nurse, or dietitian you are having trouble swallowing. Some people may need a procedure called a dilatation to correct this problem. If you need this, your doctor and nurse will explain the procedure in more detail…”

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5.     https://www.oncolink.org/support/nutrition-and-cancer/during-and-after-treatment/post-esophagectomy-diet

“Post-Esophagectomy Diet

Karen Wagner, MS, RD, LDN and Katrina Claghorn, MS, RD, LDN

Abramson Cancer Center of the University of Pennsylvania

Last Modified: June 16, 2017

Esophagectomy is a surgery to remove all or part of the esophagus, which is the tube food moves through on its way from the mouth to the stomach. When the esophagus is removed, the stomach is pulled up into the chest and reattached to keep the food passageway intact. This stretching of the stomach takes away the ability to eat large meals, as there is no longer a large "holding area" for food to be digested. Nutrition is an important part of healing and preventing weight loss after surgery. Patients can experience nausea, vomiting, acid reflux, and dumping syndrome. This article will review some ways to decrease these symptoms. Check with your healthcare team for specific recommendations for your case.

After the surgery, the remaining esophagus may not be able to move foods as easily from your mouth to your stomach. Certain foods can block the esophagus or be difficult to swallow. Some people complain of food "sticking", or have midsternal (behind the breast bone) pain. This may be prevented or resolved by sipping fluids when eating solid foods, chewing foods well, eating soft or chopped foods and avoiding tough, gummy, or stringy foods.

You may also get gastroesophageal reflux symptoms, such as heartburn and reflux of stomach contents, causing intolerance to certain foods, especially acidic, fatty, and very hot or very cold foods. Gas and bloating sometimes occur after surgery. Therefore, you may wish to avoid foods that are known to cause gas.

Each person is different and will tolerate different foods. Only you can decide which foods 'agree' with you and which don't. Below are ideas that may help you to manage your symptoms. The most important guide is how you feel after eating a food…”

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6.     https://cancer.uvahealth.com/images-and-docs/esophagectomy.pdf

“NUTRITION GUIDELINES FOLLOWING ESOPHAGECTOMY

WHY DO I NEED A SPECIAL DIET?

After your surgery, you need a diet designed to reduce foods and beverages that could make swallowing difficult or irritate your esophagus. This diet will also help you get enough calories and protein to help you heal and recover.

HOW LONG WILL I HAVE TO FOLLOW THIS DIET?

When you leave the hospital you will likely be on a FULL LIQUID DIET FOR A WEEK OR TWO BEFORE MOVING ONTO THIS DIET DESCRIBED BELOW.

You will need to follow this soft foods diet for 3-4 weeks after surgery. At your first follow-up appointment after surgery, your surgeon or nurse will let you know if you can start eating different foods. It is likely you will always need to eat small, frequent meals…”

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7.     https://www.mskcc.org/cancer-care/patient-education/about-your-esophagectomy-surgery

[My note:  This too is an extensive informative article.  Anyone in post-op treatments presently will be helped greatly by printing out the entire article.  It will be helpful in knowing the procedure that they will follow.  I’ve only included the first part of the intro here, because you mention that your Dad has the 3-hole esophagectomy aka as the McKeown Esophagectomy.]

“About Your Esophagectomy Surgery

About Your Surgery

This guide will help you prepare for your esophagectomy surgery at Memorial Sloan Kettering Cancer Center, and help you understand what to expect during your recovery. Read through this guide at least once before your surgery and then use it as a reference in the days leading up to your surgery. Bring this guide with you every time you come to MSK, including the day of your surgery, so that you and your healthcare team can refer to it throughout your care.

An esophagectomy is a surgery to remove part of the food pipe between your mouth and stomach, which is called the esophagus (see Figure 1). Your surgeon may also remove part of your stomach to make sure all of the cancer is taken out. The remaining part of your stomach will be reconstructed and attached to what is left of your esophagus.
There are different ways to perform esophagectomy surgery. Your surgeon will talk with you about which approach is best for you.

• During an Ivor-Lewis esophagectomy, also known as a transthoracic esophagogastrectomy, an incision is made in the center of the abdomen and along your side, toward the back. After the tumor is removed, the stomach is reattached to the remaining part of the esophagus.

• During a transhiatal esophagectomy, the esophagus is removed through 2 incisions, one in the neck and one in the abdomen. After the tumor is removed, the stomach is attached to the remaining part of the esophagus through the neck incision.

• During a 3-hole esophagectomy, also known as McKeown, incisions are made in the abdomen, neck, and right upper back.

• During a minimally invasive esophagectomy, a tiny camera called a laparoscope is inserted into the belly through multiple small incisions in the abdomen and back, below the shoulder. A robot may be used to assist…”

• _____________________End of references____________________

Taka01 said:

Mrs. Marshall

Aloha,

Im not sure if you got a response from me but I did inbox you.

Dear Taka,

I appreciate your filling me in more completely on the tragic loss of your father.  Pure and simple--Fruits are not the first food to be ingested after one has passed the Barium Swallow test.  I gave you one example of how wrong this was.

My example:  Your wife has just given birth to one of your children.  They're fresh out of the womb.  But your wife skips the "formula" or "breast feeding".  Instead she proceeds to get out the baby spoon and starts feeding the infant strained fruits.  You're right--it makes no sense!  

Praying for you and your family,

Loretta