Category Archives: Feeding Tube Support (PEG tube)

Recipes, links and suggestions for maintaining weight while using a PEG feeding tube.

Intensity Modulated Proton Therapy (IMPT) Reduces Need for Feeding Tubes by 50 Percent in Head and Neck Cancer Patients

This is very good news!

Intensity Modulated Proton Therapy (IMPT) Reduces Need for Feeding Tubes by 50 Percent in Head and Neck Cancer Patients.

PEG Tube Recipes (in Colors of the Rainbow!)

Go for the colors of the rainbow!

One of the great advantages of the PEG tube is that you don’t have to concern yourself with how your recipes taste.  This means you can get an amazing variety of foods through it!

TWO THINGS BEFORE YOU TRY THESE RECIPES:

Before using anything but canned formulas like Ensure, be sure to read this excellent blog, You Start With a Tube: Blenderized diet, tube feeding and related stuff.

Also, make sure you are using the right kind of blender.  See my post, It Starts With the Right Blender.

I went with five basic colors for smoothies, based on the Five Elements in Traditional Chinese Medicine.  Why?  Because each color nourishes a particular organ system, leading to a balanced diet.   After all, it just makes sense that if you vary the color of the food every day, over the course of 5 days you’re going to be including all essential nutrients.

Besides, it didn’t hurt my spirits or his to introduce a little playfulness to the process. With each recipe add small amounts of each ingredient until your blender is full.

Don’t worry if you can’t find some of the ingredients….this is just intended to give you some ideas.  Improvise!

TIP: Some ingredients you will ALWAYS use, like a scoop of protein powder along with fish oils, flax oils, and fresh ginger.  Your base liquid consists of whole milk, Ensure, or Boost Plus.  Don’t just use fruits– also use vegetables and grains as well.  After that, think color!

BLUE MONDAY

Purple/red cabbage

Frozen blueberries

1 apple

1 slice ginger (great for digestion)

1/2 lime, seeds and pith included

1 teaspoon flax oil

1 teaspoon fish oil (or 3 fish oil capsules, oil squeezed out of capsules)

1/4 cup coconut milk

1 teaspoon liquid acidophilis

1 cup whole milk

1 packet Instant Breakfast

1 scoop protein powder*

1 Ensure or Boost plus

Pulse twice for 15 seconds, then blend twice on highest setting for 50 seconds.

RUBY TUESDAY

1 beet root

1/2 bell pepper

1/2 red apple

V8

Frozen raspberries, frozen strawberries, or Gouqizi

1 scoop protein powder

fish oils

flax oil’

1/4 cup coconut milk

1 cup whole milk

1 can Ensure Plus or Boost plus

Pulse twice for 15 seconds, then blend twice on highest setting for 50 seconds.

This can be found in cans in the Asian or Thai section of your supermarket..

WHITE WEDNESDAY

1 cup whole milk

1/4 cup coconut milk

Vanilla Instant Breakfast

1 scoop protein powder

1 slice fresh ginger

1/2 cup Greek Vanilla Yogurt or Vanilla Ice Cream

1 apple

Cauliflower stems

fish oils

flax oil

1 Ensure Plus or Boost Plus

1/4 cooked quinoa or white rice

Pulse twice for 15 seconds, then blend twice on highest setting for 50 seconds.

Sooo good for you!

GREEN THUMB THURSDAY

2 broccoli stems

spinach

kale

wheat grass

cilantro

flax oil

fish oils

1 cup whole milk

1/4 cup coconut milk

Kombucha multi-greens drink

1 scoop protein powder

Pulse twice for 15 seconds, then blend twice on highest setting for 50 seconds.

ORANGE YOU GLAD IT’S FRIDAY

1 tin sardines in mustard sauce

1 cup whole milk

baby carrots

frozen corn

frozen pineapple

Gouqizi (Chinese Wolfberry) (or may use 1/2 orange including pith and seeds)

1 teaspoon flax oil

liquid acidophilis

1 slice fresh ginger

1/4 cup coconut milk

1/4 cup protein powder

1/2 orange

Orange Gatorade

Pulse twice for 15 seconds, then blend twice on highest setting for 50 seconds.

frozen sweet cornMELLOW YELLOW WEEKEND

Frozen sweet corn

1/2 banana

frozen pineapple

1/4 cup Quinoa ( a high-protein grain that is cooked like rice)

Tin of sardines in Mustard Sauce

Whole milk, Ensure, or Boost Plus

Protein Powder

slice of Ginger

flax oil

Pulse twice for 15 seconds, then blend twice on highest setting for 50 seconds.

* Our protein powder of choice:

An excellent vegetable protein powder, and very digestible

The 1,000 Calorie Shake

This goes down easy

Between the time John was diagnosed (January 11, 2012) and the time he started radiation and chemotherapy on March 12th, we knew we had to get some extra weight on him…fast.  He weighed 158 pounds, and at 5’7″ this was mostly muscle from working out regularly at the gym.  We had to let go of some ideas about “healthy eating” (which for us was low fat) and increase his fat intake.  We succeeded in putting 10 pounds on him, which was much harder than it might seem. John naturally does not have a big appetite and never has eaten much food at one sitting, so condensing as many calories as possible into one glass was essential.

We also knew that after two weeks of radiation he would start to have trouble swallowing solid food.  It was agreed that he would need a feeding tube (or PEG tube).  We were also going to need a high calorie drink that would fit in the tube.  Fortunately, I was in touch with a woman whose husband had just finished his treatment, and she gave me her 1,000 Calorie Shake recipe.

The thousand calorie shake just starts at 1,000 calories….and it can be modified in many ways.  This is just a baseline to get you started!  You don’t need a special blender for this recipe, either.

The Basic Version can be either swallowed or put through the PEG tube.  Notice that I only use vanilla flavor.  This is because Cisplatin (chemotherapy) or radiation can make flavors like chocolate taste metallic or strange for awhile, but vanilla seems pretty harmless.

Sometimes even now, five months after the end of treatment, John’s throat gets sore from eating new foods, and I’ll make up a quick 1,000 Calorie Shake to keep him going.

Basic Version with Ice Cream:

Ingredient Calories Protein Fat grams
8 oz Whole Milk 150 8 8
Veggie Protein Powder* 129 22 1
Instant Breakfast, 1 packet Vanilla 130 5 0
1/2 cup Vanilla Ice Cream 150 3 7
Boost Plus or Ensure Plus 360 14 14
Malted Milk Powder, 3 Tblsp 90 2 2
Totals 1009 54 32

Here’s a denser version, with Greek Yogurt for probiotics and Coconut Milk:
You might want to check out this article on The Ten Benefits of Coconut Milk.

Ingredient Calories Protein Fat grams
8 oz Whole Milk 150 8 8
Veggie Protein Powder* 129 22 1
Instant Breakfast, 1 packet Vanilla 130 5 0
4 oz Vanilla Greek Yogurt 160 4 10
Boost Plus or Ensure Plus 360 14 14
1/4 cup Coconut Milk 138 1.37 14.3
Malted Milk Powder, 3 Tblsp 90 2 2
Totals 1157 56.37 49.3

Want to add more fat and protein?
Add 1 raw egg

Ingredient Calories Protein Fat grams
1 raw egg 78 6 5

Pulse the egg in at the end or it makes it too frothy.  DO NOT add the egg through the PEG tube.

*Let’s talk about protein powder:

An excellent source of plant proteins

Because these shakes are inevitably dependent on dairy products, I used a plant based proptein poweder instead of a whey (dairy) based or a soy based powder.  The Life Basics Vanilla Plant Protein Powder tastes good and gets its protein from a combination of Pea, Hemp, Rice with Chia Seed.

See my upcoming post on Five Element Feedings, where I show you how I got really creative using 5 colors of the rainbow in making daily drinks in the BlenTec blender for John.

It Starts with the Right Blender

The key to my learning how to put real, actual food through the PEG tube (because John quickly grew weary of the processed gunk) is having the right blender.  Any foods introduced through a PEG tube have to be the same thin consistency as Ensure, and a regular blender can’t accomplish this.  It takes a Three Horsepower blender that can reduce foods down to micron level without any leftover sludge or debris that could clog the tube.

Fortunately, we’d already been using a BlendTec blender for a couple of years, a three horsepower blender so powerful you could probably mow the lawn with it.  While they are pricey, ours is worth it for these reasons:

  • We use it every single day as a major appliance for making smoothies or soups
  • It is sturdy and durable
  • You can process the most nutritious parts of fruits and vegetables such as skins, stems, and seeds, without any leftover residue
  • It is remarkably easy to clean.  You simply rinse out the blender when finished….no parts to lose!

Just how efficient is one of these blenders?  You be the judge and check out this video, where an iphone is successfully blended to dust within seconds.

I’ve been told the Vitamix blender works the same, and it is a similar price.

Smoothie Formulas by Jeff Primack

What to Blend Up:

I first learned how to blend and combine nutrional foods basked on Jeff Primack’s book, Smoothie Formulas, which includes recipes with cancer-fighting phytochemicals.

The remarkable thing is how many parts of a fruit or vegetable are entirely pulverized in a three horsepower blender…things like apple seeds and pith, even avocado pits!

For more recipe ideas see my post, Five Element smoothies (or how to get all colors of the rainbow into your smoothies!)

UPDATE: 07/08/12

John is 11 weeks out from his last radiation treatment and hasn’t had the PEG tube for several weeks.  His throat is still too sore for most foods, though, and many of the foods I could formerly blend up and put through his tube without regards to taste or acidity are still too harsh on his throat.  I still use the blender every day while I figure out what new foods can be introduced.

Today was a hot summer day, so I made a watermelon smoothie, including a large wedge of watermelon (seeds and rind included), cucumber (seeds and rind included), vegetable protein powder, Greek yogurt, and coconut milk.  He found it light, refreshing, and tasty.

To PEG or not to PEG: Pros and Cons of using a Feeding Tube

As always, I am not giving medical advice here, just recounting why we chose to go with a PEG tube before John started radiation.

John was very fit and trim when he was diagnosed. He worked out with weights 3-4 times a week, took Pilates classes, and rode his bike regularly. At 5’7″ and 158 pounds he had very little body fat or weight to spare.

During the time between diagnosis and treatment we were able to add an additional 10 pounds to his frame, so he started treatment at 168 pounds.

Why John Chose the PEG Tube:

Going in, John was told he would lose 10-40% of his body weight from radiation. My biggest concern for him going in was weight loss. As I started reading blogs about dealing with side effects from radiation I first ran into the idea of a PEG tube. Punching a hole directly through your abdominal muscles and into your stomach sounded invasive and extreme, and I wasn’t sure John would go for it. As it turned out, he had no hesitation about it. John had just met a fellow who had gone through 6 weeks of radiation for HPV squamous cell tonsil cancer that was discovered in situ (that is, no spread to the lymph nodes) and he had chosen against the feeding tube. He ended up losing 40 pounds which actually brought him down to a normal weight. But John knew full well he didn’t have 30-40 pounds to spare!

John’s ENT and Radiation oncologist both recommended the PEG tube. John’s chemotherapy oncologist explained that the use of the tube is controversial to some. If a person becomes dependent on the tube and stops eating altogether they can have much more trouble regaining their swallowing ability after treatment. It was emphasized to John that even though he would have a feeding tube, he would have to regard it as an ancillary method of getting nutrition in him. He absolutely had to keep swallowing on a daily basis. John agreed to this. I had spoken with a local man who had undergone treatment for the same cancer 5 years earlier, and he had also used a PEG tube. He had gone for 5 weeks without swallowing at all, getting all his nourishment through the tube, and as a result five years later still had some difficulty with choking when eating. So John had a pretty clear idea that this was to be avoided.

John did continue to swallow every single day of his treatment and aftermath, even when it was excruciating to do so. He was told that water would be the most difficult liquid to swallow (thicker, more viscous liquids are easier), and so he made that his personal challenge and swallowed his morning pills with water every single day. As a result, he has had no difficulties with regaining his ability to swallow, as he never let it go.

It was recommended that John get the PEG tube “installed” at least three weeks before treatment started so that the wound would be completely healed up. He was warned that people who decided to “tough it out” without the tube would find it much, much more difficult to have one installed later.

Getting the PEG tube Installed:

John’s PEG tube was installed on 2.17.12. His first radiation treatment was scheduled for 3.12.12, so this gave him plenty of time to heal.

The procedure was done in the hospital under intravenous (not general) anesthesia. He was assured that this was going to be one of the simplest procedures with little downside or discomfort. Unfortunately, while this is true for most people, this proved not to be the case for him. I’m not describing this to scare anybody, but what happened to him has since happened to another acquaintance of ours who was subsequently diagnosed, and it is something that can be prevented.

John was sedated and taken into the procedure room. Briefly, a guide wire with a light on the end of it is run down the esophagus into the stomach. The surgeon then makes a small cut where he sees the light shining through the skin, and the plastic PEG tube is inserted through the hole. The tube is held in place inside the stomach by a small mushroom-shaped “cap” on the end. On the outside, the tube is held in place against the skin by a plastic hub.

When John awoke from the sedation he immediately had severe cramping. He was trying not to complain and to be a “good patient” but the cramps came in intense waves. He was given a shot of Dilaudid for the pain, but an hour later he was still having extreme waves of cramping. At this point somebody should have taken the bandage off his abdomen and checked the placement of the tube…but no one did. Instead, he was given another shot of Dilaudid. At this point John wanted nothing more than to get home and rest, and he assumed that the cramping would subside over time.

Unfortunately, while it did subside somewhat, the pain was still severe. When I came home from work that evening he was flattened in bed, unable to move an inch without intense pain. Sitting up in bed was impossible. He could slowly, with much painful effort, roll over on his side and I could then help him sit up. The waves of intense cramping were getting further apart but he was miserable.

Long story short, he spent an exceedingly miserable night in his reclining chair, hoping for respite. We knew we could go back to the emergency room, but we knew that would be an ordeal and that he would wait 6-8 hours in the waiting room.

I spent the evening searching the internet for an answer. I found two blogs where two men had the exact same experience. What they had in common? Both were lean, fit, muscled men with very little body fat. In one case the man went to the emergency room and the hub on the PEG tube was loosened by a GI doctor. In the second case, the man figured out how to loosen the hub himself, relieving his pain.

The following day we took the bandage off and studied the feeding tube. We tried fiddling with it a little bit to see if we could loosen it, but the mechanism for doing so wasn’t apparent. I called the on call number for the gastroenterologist who placed the tube, but instead of the call going to an answering service with a live operator, I got his office’s voicemail. Clearly I wasn’t going to get a call back before Monday (This turned out to be true, as the doctor’s office has neglected to switch their phone system over to the operator for the weekend).

What happens next shows the power of patience and persistence. I called the hospital and asked for the gastroenterologist on call. I was transferred to the emergency room, spoke with a nurse, and was transferred to the charge nurse, who couldn’t believe we could not contact John’s gastroenterologist. She even tried calling his office herself. She suggested we come to the emergency room. I explained that while John was very uncomfortable this was not a true emergency, that I didn’t want to make the 40 minute drive if I could help it, and that I didn’t want to sit in a waiting room for several hours with a cancer patient in the middle of a flu outbreak. She took my point and said she would contact the GI doctor on call.

15 minutes later the GI doctor on call called back. He had John’s records in front of him and saw the two Dilaudid shots that had been given. I explained John’s slim build and “wondered” if perhaps the tube was too tight. He agreed that John’s symptoms were likely muscle spasms from the tube being cinched down too tightly. He suggested we come to the emergency room. I explained again why I didn’t want to use the limited resources of the emergency room for a non-emergency. I explained that we were both medical people and understood the need for keeping the wound clean. I asked if he could simply talk us through the process of loosening up the tube ourselves. Thankfully, he decided to trust us, and explained how to go about releasing the pressure on the tube. It took us about 15 minutes of working with it, but once we loosed the hub on the tube and backed it out 2 cm, John’s relief was immediate and profound.

What am I suggesting here? I am not in any way, shape, or form suggesting that you fiddle around with your own PEG tube. I do suggest that, if you have it done:

1) Don’t have it placed on a Friday afternoon. If there’s a problem you don’t want to have to go to the emergency room.
2) Don’t leave the facility if you’re having pain or cramping, no matter how “difficult” a patient this makes you seem.
3) If you are slim or don’t have much body fat around your abdomen, report any cramping immediately. From what I can tell (and I realize this is only anecdotal), thin healthy men seem to have more trouble with their PEG tubes.

A couple of weeks ago I heard from a man about John’s age who weighed 130 pounds going into his treatment. There was no question he needed a PEG tube. He had the same experience as John, experiencing severe cramping and pain. He did end up in the emergency room until the gastroenterologist on call could come and loosen up the hub on his tube.

The feeding tube was a lifesaver.

One of the best resources I encountered was a blog called “You Start With a Tube.” The writer here was dealing with a long-term disease that rendered him unable to swallow, and he quickly grew weary of canned guck as well. Look for more information about him, about how to put all kinds of foods down a PEG tube, and how to deal with a clog if it happens.

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Support for those supporting people with HPV+ throat cancer

Support for those supporting people with HPV+ throat cancer

HPV Origin Throat Cancer

Diagnosed July 6, 2012 via Tonsil Biopsy

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Support for those supporting people with HPV+ throat cancer

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