I thought it might be of interest to some obscure number of people who have followed Thomas's journey to know what he can currently eat seven months after his total gastrectomy. The first year involves a lot of adaptation of the gastrointestinal system.
What Is a Gastrectomy?
First, let's define terms because I have become aware that plenty of people don't know! A gastrectomy is a surgery to remove part or all of the stomach: the actual pouch that holds food and breaks it down before passing the food mixture along to the intestines that draw the nutrients out and pass them into the blood. A gastrectomy is partial or total and people in the gastrectomy world always distinguish which they underwent (PG or TG).
There are many other drastic surgeries many of us have never had reason to hear of: removal of esophagus, or many feet of intestines, or the colon, etc.
I had never heard of a gastrectomy. Our surgeon actually forewarned us when Thomas's GI bleeding was uncontrolled for many days that he might have to perform a gastrectomy. I asked what that was and he explained it was removal of the stomach. I actually burst out laughing because I thought this man (who had never before joked) was pulling my leg . . . because how could such a surgery exist? The nurse bustling around the room went from quiet to silent and a pall was cast on the room such that I realized he was not kidding. I still thought it was absurd and impossible, so a couple days later when Thomas did experience an emergency gastrectomy, I was nearly as shocked than if our surgeon had not warned us at all.
Even though Thomas had a gastrointestinal reconstruction surgery later, he does not have a stomach and never will. There is something called a Hunt-Lawrence pouch, which is a special looping of the small intestine to create something of a pouch which can make it easier to eat more quantity of food at once. However, the pouch would still not be a stomach because stomach tissue performs many specific functions (such as releasing digestive juices) that are entirely different from what intestinal tissue can do. Thomas's surgeon could not give him a Hunt-Lawrence pouch because Tom was so close to death during his 10 surgeries over December that he needed a very simple reconstruction: his esophagus attaches directly to his small intestine and there is a bit of his lower esophageal sphincter muscle remaining, but not all of it. It is an option to give Thomas a Hunt-Lawrence pouch in a future surgery, but we are not thinking deeply about that either way at this time.
Almost all gastrectomies in the world are on adults as a result of stomach cancer, but also a subset are for gastroparesis or ulcers that will not stop bleeding. A child having a total gastrectomy is exceedingly rare: there might only have been a few hundred performed ever in the whole world. Therefore, knowledge about gastrectomy in children is very limited.
FYI: A total gastrectomy is not like bariatric surgery for weight loss.
WHAT DID THOMAS EAT BEFORE?
Our family had a middling diet, maybe not as bad as a Standard American Diet, but definitely not "health nutty." Our kids eat few vegetables, but I also don't allow soda or juice in the house. Being a homemaker, they really are eating most of their three meals and two snacks at home. I have always cooked a hot breakfast daily (bread product, eggs, sausage, fruit), lunch is sandwiches or leftovers, and I make a hot dinner, simple, but not junky (usually a meat, a starch--and a veggie that only adults eat). We usually ate dessert one to two nights weekly. Could be better, could be worse.
There is all manner of great advice about how to eat amazingly well, but Thomas is only five years old. An adult gastrectomy patient can decide to use sheer willpower to eat baked fish, 100% whole wheat everything, and all foods sugar free, but a child does not have reason or willpower for that endeavor. Gastrectomy patients also have very diminished appetite, so, while Thomas is on an appetite stimulant medication, if we get into a standoff about what to eat, he is going to win because he just isn't that hungry. A child must eat enough calories plus extra in order to grow and we cannot have a child going into standoffs, refusing to eat, so it is an incredible dance of sorts to encourage Thomas to eat, but eat the right foods yet without feeling deprived or punished.
DIABETIC PRINCIPLES
Thomas needs to follow generally diabetic principles when eating, but not for the same reason. His pancreas produces sufficient insulin to manage sugar in the bloodstream, but that is the second step in processing sugar. The first step is actually digesting the sugar in the food before transmitting it into the bloodstream. If there is one thing those without a stomach cannot digest well, it is sugar!
If a gastrectomy patient eats too much sugar in a sitting, it will cause Dumping Syndrome: the body will rush the undigested sugar through the intestines to the colon, the colon will draw a tremendous amount of water from the body into itself, and it will dump the offending sugar out of the body in the form of chronic diarrhea (and often accompanying other bodily symptoms, such as sweating, nausea, faintness, great fatigue, blood pressure problems, racing heart).
It is recommended that Thomas limit his added sugar to 5 grams per snack and 10 grams per meal. (I use My Fitness Pal to track Thomas's food and his sugars over the last 30 days have ranged from 10 g to 52 g per day, but most often around 40 grams.)
- The American Heart Association recommends people limit added sugar to 24-36 grams per day, but Americans average eating three times that much. One delicious muffin from Panera Bread contains 51 grams of sugar.
- The U.S. Department of Health and Human Services and Department of Agriculture advises limiting the intake of added sugars to less than 10 percent of total calories consumed each day. (Example: If you eat 1,500 calories, only 150 calories should come from sugar, which equals 37.5 grams.)
- I actually cannot find a recommendation of sugar intake from the American Diabetes Association; I wonder if that is because that association is helping people who already have Type 1 and Type 2 diabetes, so their recommendations are going to be very individualized and lower.
PROTEIN
PAIRING PROTEIN WITH CARBOHYDRATES
It is very important to pair protein with simple carbohydrates that Thomas eats. This is something I talk about often enough that when he asks for something like crackers, he automatically says, "and for my protein I will have . . . "
Protein slows down the digestion of carbohydrates and helps avoid Dumping Syndrome.
I have very little to say about this principle because it is so simple, but it is vital!
We are so glad Thomas likes meat!
He is very happy eating rotisserie or grilled chicken, and often eats deli turkey, deli ham, salami, and pepperoni. On taco night, he likes to eat a bowl of seasoned ground beef. I truly don't know what we would do if he did not like meat. He eats meat multiple times daily and often as his bedtime snack--just plain meat!
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| Chicken en pappilote |
Fried meat is not the best for someone with a gastrectomy but Thomas can eat it. We try to choose non-breaded meat most of the time. I don't mind giving him baked chicken nuggets (the frozen kind). I don't feel very safe giving him fried meat from a restaurant because the oil and breading is going to be so much.
We have switched to no-sugar added peanut butter, but Thomas does not have to avoid things like palm oil. This makes it easier because we can buy conventional, shelf-stable peanut butter, like No-Sugar Added by Jiff or Skippy.
Thomas will tolerate fried eggs, but he actually likes hard boiled eggs.
Nuts: He particularly likes peanuts and pepitas (pumpkin seeds), so I can work those in to a trail mix with very few raisins and/or very few miniature chocolate chips.
BREAD
A primer: The labeling of bread products in America is a minefield. The "whole wheat" label just means that some whole wheat flour was mixed in to the white flour. The "multigrain" label just means that multiple wheats are used, even if the vast majority of the bread is white flour. For Thomas, we are supposed to give him "100% whole wheat" (the only label that counts!), at least 50% of the time, according to the dietician, but I am for 75% of the time.
Like typical 5-year-olds, Thomas does not like "weird" bread "with nuts and things," so I have to find the most conventional bread I can:
- Nature's Own 100% Whole Wheat
- Pepperidge Farm 100% Whole Wheat
Whole wheat hamburger buns and hot dog buns cause the whole family to revolt, so we buy white and Thomas eats little of them.
I make pancakes from an Aunt Jemima Whole Wheat Blend and serve Vans Multigrain frozen waffles.
Tortillas: I buy Mission Low-Carb Tortillas, although they are still made of white flour. My kids would revolt at whole wheat. Thomas might eat one half fajita size tortilla in a sitting.
In general, my kids don't love almond flour for baking; however, Thomas does enjoy Simple Mills almond flour muffin and cupcake mixes, which make for an easy option.
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| Making almond flour muffins |
Dinner rolls: Sometimes I like to serve frozen dinner rolls (quick and easy) with dinner, but my local store does not carry any that are whole wheat. I tried making my own this week, making a triple batch, serving one that night, and freezing two other batches.
PASTA
I combine 50% white flour pasta and 50% whole wheat pasta, as 100% whole wheat pasta causes revolt. The children don't seem to notice the 50/50 split.
The bigger shift is that I switched from serving pasta as part of dinner probably five nights weekly to only two nights weekly.
PIZZA
Pizza has proven a sad enigma and may be something Thomas has to generally avoid. Too many carbs in the crust? Too much lactose or fat in the cheese? Too much sugar in the sauce? Thomas clearly experiences Dumping Syndrome after restaurant pizza or store-bought frozen pizza. We had success with my making whole wheat pizza dough from scratch, but that certainly made for a complicated Friday when typically I've had Friday Night Pizza Night for years because it was easy. We did recently find Milton's cauliflower crust frozen pizza at Costco and this seems to suit Thomas's stomach, at least if he only eats one slice (but maybe not two).
CRACKERS AND CHIPS
Thomas seems to be fine eating a snack-size bag of chips and does not even need them to be baked chips.
Nonetheless, I have limited him with crackers and chips, although at least those contain fat. He is a typical 5-year-old so isn't willing to eat uber-healthy substitutes, like crackers made of chickpeas or black beans.
I have discovered that pretzels are particular folly because they do not contain fat: they're basically white flour and water! They cause Thomas to experience Dumping Syndrome, so I count them out (e.g., 10 pretzels) and he MUST eat each bite paired with protein (meat or peanut butter).
SWEET THINGS
Thomas has had to give up candy nearly wholesale for the rest of his life. I've decided not to pursue the sugar-free candies because they are made with particular sugar substitutes that cause diarrhea even in normal gastrointestinal systems. I think it's easier to make a clean break from candy.
There are a few, high-quality chocolates (expensive, wholesome ingredients) that Thomas can eat, one piece of at a time. Last Easter, I reduced our family candy in the plastic Easter eggs by about 90% and introduced a rule that you get to eat one candy per day.
We have greatly reduced ice cream in the house. Breyer's Sugar Free is a good option (8 g sugar alcohol in 2/3 cup, but Thomas eats probably 1/4 cup max).
Yasso Greek Yogurt bars are a huge hit! One bar is 100 calories, 5 g protein, and 13 g sugar, and low in lactose because it is Greek yogurt. Thomas does not eat a full bar, so the sugar has not proven to be a problem.
For desserts, I am focusing on serving homemade, lower-sugar baked goods but without using obscure or expensive sugar substitutes. When I search for "low sugar" recipes, so many of them are also so healthy nutty that they taste terrible to a modern palate: no egg, no gluten, no flour, no nut, no sugar, no taste! I'm currently enjoying Naturally Sweet, a fantastic cookbook made by America's Test Kitchen with the goal of creating conventional recipes with 30-50% less sugar.
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| Low-sugar scones |
Tip: Use miniature chocolate chips instead of full-size. Reduce the amount you put into a recipe. There is no rule saying that a batch of chocolate chip cookies requires the entire 12 ounce bag of chocolate! Try 3 ounces of mini chocolate chips in a batch of cookies and you'll see how good they still are!
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| Low-sugar cookies |
I try to lower or eradicate sugar in condiments because it is such a waste of sugar. Condiments to guard against:
- Ketchup (5 g sugar in 1 tbsp!)
- Typical sweet-style barbeque sauce (~9 g sugar in 1 tbsp!)
- Typical pizza sauce can be up to 5 g sugar per 1/4 cup versus Rao's Pizza Sauce (2 g sugar per 1/4 cup)
- Any of the Asian sauces
- Basically, if the condiment tastes delicious, be suspicious!
Maple syrup is 8 g sugar per 1 teaspoon, so I keep that in the house for baking, but don't let Thomas use it. We are currently trying date syrup, which is 6 g sugar per 1 teaspoon, and Thomas has only about half of one teaspoon on his whole grain waffle.
I've been buying our grocery store brand Lower Sugar Preserves, which still uses cane sugar but is only 5 g sugar per 1 tablespoon: I only put one-half tablespoon on a full PBJ sandwich for Thomas . . . and, honestly, he virtually always eats only one-quarter sandwich, which is then only 1.25 g sugar from the jelly. I'd rather not buy sugar-free jelly made with artificial sweeteners, but I may need to add that to our repertoire someday.
FRUIT
Fruit is great! Right now because it is summer when fruit is plentiful, it is plentiful on our home table, usually set out at two meals daily. God designed fruit so we could enjoy sugar paired with fiber to fill us up and slow down the digestion. Thomas's dietician said fruit would be fine for Thomas and so far that has proven true. Of course, his servings are small, as in everything: he might eat one or two strawberries, or two slices of apple or orange.
Fruit juice, in contrast, is FORBIDDEN for Thomas. There are not many worse things one could give to someone without a stomach than straight fruit juice. For example, 8 ounces of a typical apple juice contains 28 g sugar with zero fiber, zero protein, and zero fat to slow down its digestion. One cup of apple juice contains more sugar than is recommended for healthy adults to consume in an entire day, so it is really something to consider eradicating from all children's diets except for the most occasional of treats. Thankfully, Thomas's transition was easier because I only allowed juice at special breakfast restaurants and I virtually never allowed soda.
I do serve a lower sugar lemonade for Thomas so he can occasionally have a sweet drink. The True Lemon brand mix uses only 1 g of cane sugar for 16 ounces, but (1) I water that down and (2) Thomas might drink 4 ounces max. I only serve this to fend off his feeling deprived and resentful. Example: At our parish after Mass, they put out regular lemonade, so that is a really good time for me to provide this for my boy to feel like he is one of all the regular kids.
Fried apples are a fun sweet treat we are serving lately: We used to fry apples with tons of sugar, but have discovered we can sauté about 4 apples with butter and just a teaspoon or so of sugar with a shake of cinnamon and it's great!
DAIRY
We are experimenting with Thomas eating reduced lactose. Apparently, a goodly percentage of patients develop lactose-intolerance after total gastrectomy. Lactose is a sugar in milk that is digested by the enzyme lactase. Our small intestine produces lactase, and Thomas still has his small intestine in its entirety, but the reason why lactose intolerance may still develop is that when one does not have a stomach (a holding pouch for food), food passes through the GI tract very quickly, so the lactase may not have enough time to break down the lactose before it is zooming past. The lactose then reaches the colon only semi-digested and the bacteria that live in our colon have a field day eating the lactose and multiplying, resulting in painful gas and diarrhea.
I've learned that lactose intolerance is entirely different from dairy allergy, and that dairy foods all fall on a spectrum of how much lactose they contain.
Milk contains by far the most lactose, which is why people who are lactose-intolerant cannot drink milk. Thankfully, there is lactose-free milk (and many other lactose-free products), which is not even a weird chemical thing, but is simply finely strained to remove the lactose. It tastes the same as regular milk and even has significantly more protein (whole milk comparison: 13 g protein in 8 ounces versus regular milk containing 8 g protein per 8 ounces).
Ice cream is also problematic.
However, yogurt is usually tolerable because of the probiotics; Greek yogurt (which is what Thomas eats) is usually fine for those who are lactose-intolerant.
Certain cheeses contain more or less lactose.
Tip: Heavy whipping cream has only negligible lactose and very low sugar, so serving canned whipped cream (no extra sweetener) or homemade whipped cream with fruit or as a topping for pancakes, etc., makes things seem to be a fun, elegant treat.
VEGETABLES
Vegetables are nutritionally wonderful, but they fill up a person quickly. This is great if you are a typical American trying to eat well or lose weight. This is terrible if you are a growing five-year-old without a stomach. Thomas might eat two broccoli florets and feel full, so he consumed only 15 or 20 calories, when he could have consumed many more calories of nutrition-dense food.
The short of it is: we have to be careful about vegetables, and if that means Thomas will obtain his vitamins and (soluble/insoluble?) fiber through supplements, then so be it.
We have also recently learned that those with a total gastrectomy have great difficulty digesting raw vegetables. The general consensus seems to be that raw veggies should be avoided or pain and GI symptoms arise quickly.
FAT
How much fat Thomas can tolerate remains a mystery. There is the problem of too much fat causing Dumping Syndrome and the problem of possible malabsorption because he has diminished pancreatic function and no gallbladder at all. So far, we have not seen full-fat foods cause problems, and full-fat is better for him to get calories as a growing little boy. However, we have no idea how much he is absorbing.
However, his dietician had him try supplementary MCT oil (coconut oil) because medium-chain triglycerides are already broken down and should be more easily digested and would nicely increase his caloric intake. Only three days of supplementation caused a week of absolute havoc on his GI system. (Also, without being graphic, it is very clear to see when a human dumps undigested fat.)
RESTAURANT FOOD
Restaurant food is very dodgy for Thomas because the reason restaurant food tastes so good is because of tons of added sugar and fat. One can rarely check the nutritional info of restaurant food, but we do when we can. We ask for exceptions (can you just grill us a piece of chicken?). It is simply a minefield and restaurant food is part of what wrecks havoc on Thomas's system when traveling.
SUPPLEMENTS
Thomas takes a multivitamin and Benefiber daily.
His vitamin B12 levels are checked regularly: when they run out, he will need vitamin B12 injections monthly for the rest of his life. Our stomach tissue makes something called intrinstic factor, which is necessary for absorbing vitamin B12, so he will need to receive this vital vitamin straight into his blood.
Medical articles show me that he might need other supplementation in the future. His GI team will be regularly checking his blood for nutrient levels to know what is lacking.
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| Cowboy Thomas |
And that's that! If you've read this far, you are very interested in Thomas or in gastrectomy care! We've made many changes since Thomas finally came home three months ago and I'm sure we face many more adjustments. Please pray for our sweet boy to grow, as chemotherapy seems to have halted his growth for those four months and then he has not grown in his seven months post-gastrectomy.
