Things I Want Right Now: "C is for..."

Can tubies gain weight?

Scratch that. I know we can gain weight. I've heard countless stories from tubie moms whose kids put on weight after switching from formula to blended diets.

What I mean is, can tubies get fat?

Believe it or not, that fat man is me on steroids in 2006. The bear is obviously on steroids too.

That picture is of Fat Brian and his friend, Fat Bear. I was on an extremely high dose of Dexamethasone (decadron) to try to combat the side effects of radiation damage. Decadron and radiation (and jaw surgeries too!) had a couple similarities: they suck and they were of questionable benefit. One of the side effects of decadron is that it caused me to put on weight really easily and it was nearly impossible to lose it.

Could I have avoided putting on weight if I had a feeding tube? Maybe you saw the headlines a few years ago about people trying to lose weight by eating through a feeding tube. Here's a more recent article about a doctor in North Dakota (Doctor Spencer Berry) who thinks feeding tubes are the answer for Diabetes: (click here). I like the quote from a different doctor at the bottom of the article: “To receive nutrition via a feeding tube is not a realistic long-term method of nutrition. Plus using a feeding tube for a prolonged period of time can increase a person’s risk of infections.” If I live to be 90--or rather, when my friend, Jesse Jones, lives to be 90--I hope she's still around so I can ask her about that.

I think I agree with Dr. Berry's critics though. Weight loss is about losing weight and keeping it off. Once those diabetic people have lost 100 pounds and the tube comes out, will they suddenly start eating well and exercising regularly? I'm thinking their first thought will be the same as my first thought if I ever get rid of this feeding tube, "I'm going to the grocery store, buying a tube of chocolate chip cookie dough, and I will not rest until that cookie dough has been consumed in its entirety. 'Murica."

All that 'gluten free no sugar' stuff is going right out the window. I'm not proud.

Once people get a feeding tube for weight loss, they'll have to keep it in or they'll slide right back into the diabetic life. So, since I have a tube permanently, does that mean there's no way I'll get obese? My opinion is that it's possible to be overweight with a feeding tube, but it's much harder. There's an obesity problem in this country because it's so easy to eat junk. Sitting on the couch watching the game? How about a 20 oz. Coke and a bag of Doritos!! Not enough time for breakfast before work? Stop for a few doughnuts at Krispy Kreme or buy a couple Pop Tarts from the snack machine in the office! Kids whining for dinner but nothing prepared? Order pizza, or better yet, make it a McDonald's night! We eat processed crap because it's more convenient. Or we do it because we're idle and have nothing better than to eat, so we choose to eat the best tasting stuff--the stuff with all the sugar and weird sounding chemicals in it. Even worse, we eat crap because it's less expensive than the healthy stuff.

Not so simple for me to eat crap food. I ate some doughnuts on occasion before I went gluten free. But there are extra steps there. Gotta throw it in the blender, get a good amount of fluid in the pitcher to thin the mixture, sit at the table to push it in (doughnuts aren't something I can casually eat on the couch or while I'm driving anymore), then flush with water. Granted, I've done this long enough to get the amount of time down, but it's still a whole production whenever I eat. Not to mention the fact that I don't taste what I eat, so where's the joy in eating a doughnut? If I'm going to take the time to make a meal, it makes more sense to make it healthy. Too much work to get fat with a feeding tube. Hard enough just maintaining the pounds I've got.

This is not to say that you can't eat an unhealthy diet with a feeding tube. My last post was all about sugar, and how sugar--mostly corn syrup--makes up many of the calories in processed formula for tube feeder. Having a diet with a large percentage of calories coming from sugar won't necessarily make you obese, but it does give you a whole host of other problems. Sugar is bad for you in so many ways. I really feel like I need to find a university study demonstrating why sug--

http://m.ajcn.nutrition.org/content/101/6/1144.abstract 

What the...Where did that peer reviewed study from The American Journal of Clinical Nutrition come from?? I think my health-conscious big sister somehow knew I was writing a post about cookies and sent the link all the way from her home in Germany!!! She further says that this article is, "Gold-standard research revealing the traumatic effects of simple, highly processed carbohydrates (sugar and flour and the products made from them) to your heart." She's got about 100 more studies showing how bad sugar is for you, but I actually just pulled that link off her facebook page and I'm too lazy to ask her.

So anyway, all this talk of the damaging effects to our body from sugar, both last week and this week, makes me hungry for cookies; how about you? It's time for another installment of "Things I Want Right Now!" I think I mentioned above that the first thing I'd do if I could swallow was eat a tube of cookie dough? The truth is, I'd drive straight here:

The happiest place on earth

Since a very young age, I've been crazy about cookies. Especially when they're soft, sweet, buttery, fresh from the oven. I'm drooling on my keyboard thinking about it.

Where did I learn this addiction?

My mom made some awesome cookies when I was growing up. Chocolate chip, snicker-doodle, sugar, apple sauce (yes, there are apple sauce cookies and they're delicious), oatmeal. But the best cookies by far? Mom's ginger snaps.

It's time to do something a little hypocritical on my blog. Something that is the exact opposite of what I was preaching about in my last post.

It's time to share a very unhealthy recipe. I'm only doing this so you'll see the types of things you shouldn't be eating. PLEASE PLEASE, whatever you do, don't run out, buy all the proper ingredients and make these cookies!!! Also, don't take pictures of yourself eating said cookies and absolutely don't send the pictures to me so I can vicariously enjoy the cookie consumption. Betsy really wants me to make chocolate chip cookies because they're her favorite, but I just use the Nestle-Toll House recipe for them so I thought I'd share my mom's ginger snap recipe instead. Betsy is the only person on the planet who doesn't like these cookies so I guess you're out of luck, babe, sorry!

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GINGER SNAPS

Ingredients:

2 cups flour                                   1 cup sugar
2 tsp. baking soda                          3/4 cup shortening
1/2 tsp salt                                    1 egg
1/2 tsp cinnamon                           1/4 cup light molasses
1/4 tsp ground cloves
1/4 tsp ginger

1 bowl of sugar

Directions:

Preheat oven to 375. Sift dry ingredients. In a separate bowl, cream sugar and shortening. Mix in egg and molasses. Add dry ingredients. Roll balls of dough in the bowl of sugar. Place on a greased cookie sheet, sugar side up. Bake for 9 minutes.
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Now, let's put those directions into action!! For this portion of my blog I really need someone to hel--

Look, it's Grace and some other strange kid!!

Where in the world did they come from?? All I did was think about cookies and Grace popped into the kitchen. Plus, our neighbor showed up with mixing spoon in hand. How does this happen?? I guess all you need to do to get your kids to quit playing Minecraft and spend time with you is make sugary, unhealthy treats with them!!! Parents, take note!!!

WARNING: flour has a tendency to fly out of the bowl when vigorously stirred!

The recipe also has shortening in it. Shortening was developed at the turn of last century using partially hydrogenated cottonseed oil. It was touted as the "healthy alternative" to lard because Mr. Procter and Mr. Gamble wanted to stick it to the meat industry. Listen to this podcast exploring the early history of Crisco; it's actually really fascinating. Today, Crisco is an unholy mix of soybean oil and palm oil, and butter is, surprisingly, a healthier alternative. Yet shortening makes the cookies softer and, although it doesn't give you that buttery taste you love in chocolate chip cookies, ginger snaps have enough other spices that you really don't need a buttery quality. Here's another interesting link on the science of fat and why it makes cookies taste so good, because I know you're dying to read more about fat!

"Stir, you little punks, or you won't get dinner again tonight!!!"

Besides adding butter, I also could've used gluten-free flour in the recipe so I could actually enjoy these cookies, but I made the decision to make it just 'like mom used to make' and keep it as unhealthy as possible. Also, I'm trying to cut back on sugar so I prefer to feed this poison to those I care the most about, like my only daughter (in my defense, she has the audacity to eat popcorn right in front of me).

Not only is there a cup of sugar in this recipe, but there's also molasses! Though, to be fair to molasses, it's actually not as bad for you as sugar. When sugar cane is processed to make refined sugar, molasses is the by-product, so it contains many of the nutrients from the plant that are lost during refinement. Plus, molasses has a lower glycemic load. I don't know what that means either, but apparently molasses is a safe sweetener for diabetics. I actually didn't have light molasses in the house, but I had black strap molasses (the type with the most nutrients so "yea me!"). It made the cookies look a little darker, but Grace still thought they tasted good.

Other than Grace, and some random neighbor kid who happened to wander by, who did I feed these sugar-bombs to? To my fellow disabled veterans at the horseback riding thing I do every Friday, of course! Also, to my in-laws because it seems like more of them are moving to Knoxville every day and I may have to resort to drastic measures to put a stop to them.


 

If I didn't have a feeding tube, all these would be mine

My 8 year-old daughter informed me this morning that she googled my name and found my blog. She told me she read every post and especially liked the one about Red Lobster because I made mommy look like a vampire. This made me: 1) suddenly very nervous about what exactly I said in my past blog posts (haven't there been a lot about alcohol??) and 2) frantically look up parental locks online so my kid doesn't wander into some porn site when I'm out of the room. So, Grace, I know you're reading this, so I thought I'd make you a special picture just from daddy:

Who's the scary monster now??

In response, she made this:

Not too bad for her first try

Why I blend real food

There is an ongoing debate between those who put formula (like Ensure or Jevity) in their tubes and those who eat real food (what we call a "blenderized" diet). Many people have no choice in the matter. For example, there are ng feeding tubes that get to your stomach through your nose. These tubes are thinner, and I'm no expert but I'd imagine it's a lot harder to push a steak through your nose than my relatively larger Percutaneous Endoscopic Gastrostomy (didn't think I knew what it stood for, did you?), or PEG, tube.

This little man is starting the feeding tube diet early

There are also J-tubes (jejunostomy) that are inserted directly into your intestines. These tubies are also often restricted to a certain diet.

Interesting side note: the first recorded use of a feeding tube was at least 3500 years ago when Greek and Egyptian physicians used reeds and animal bladders to rectally feed fluids, like wine, to patients to treat a variety of ailments. Yeah, the first tubies were butt chuggers. Our society has progressed so much since then.

Yet there are many other tubies who have a choice about what they eat. When I first ate exclusively through my tube in 2009, I was adamantly opposed to the blenderized diet. I remember sending my sister a sharply worded e-mail explaining how my day was filled with tube feedings. Each Ensure-Plus is about 350 calories. My nutritionist wanted me to take in seven Ensures a day. In the morning, Betsy would crush my pills for me. I hadn't yet discovered the syringe holder yet, so I would have to carefully balance my nearly useless left hand on the edge of the table with my syringe grasped between my weak thumb and forefinger. I would carefully pour my pills and formula into the tube, filling it up nearly to the top (spills were common in those days). The tube wasn't high enough for the liquid to go down by gravity, so I would take the tube in my right hand and raise it up until it emptied. Then I would clamp off the tube, put it back in my left hand, and repeat this until all the formula was gone and I'd thoroughly flushed the tube with water. The tube holds about 1/3 of a cup of fluid. The Ensure, plus water to thin it out, plus my pills, came out to 2 1/3 cups, plus about a cup of water to flush. I was looking at ten or eleven syringe-fulls of fluid. Add this to the fact that our pill crusher was not so good (now I use a mortar and pestle. much easier and I can do it by myself without bothering Betsy) so I'd often get clogs. Because of this, I'd often end up sitting at the table much longer trying to coax the pills down the tube. It was maddening, and I was going to grad school here at the University of Tennessee so I was at my wit's end, often tube feeding in my parked car or in the classroom between classes.

I didn't see how actually preparing a meal with real food, then pushing it through the tube would help. Real food blends are thick and require a plunger to physically force it into the stomach. I couldn't push it in with one hand, so I would need Betsy to feed me every time. Also, I didn't yet have a Vitamix, and my low-end blender couldn't blend up meals as smoothly as I needed. With real food, I had clogs much more often so eating was a long, frustrating ordeal for Betsy and I.

I experimented with pumps to gradually pump in the food over time but with a pump I'd be chained to one spot for an hour. I was given a portable pump to carry in a small bag, but clogs were common. Finally, I started doing feedings at night while I slept. I switched to a different formula because Ensure was making me nauseous. The new one was TwoCal HN. It was 500 calories a can rather than 350. TwoCal also made me nauseous. I was steadily losing weight with no idea what to do.

Don't they look delicious?

Then, at the end of 2009, I started looking online for answers. Surely there were other people with feeding tubes out there. Did they share any of my problems? I became aware of a huge community of people all over the world in my predicament. Mostly, I've found that it is mothers caring for their tube-fed children. But there are also thousands of adults from all age groups. Many of these people were finding that they, or their loved ones, were responding much better to blended, real food. What matters is not just how many calories you take in, but the type of calories. Ensure and TwoCal are able to pack hundreds of calories into an 8-ounce can because they use A LOT of sugar. Then they pump in some vitamins and minerals and call it "total nutrition". Most nutritionists agree with formula companies, and further argue that putting real food into the tubes is not sterile. Without saliva from the mouth to help destroy bad bacteria and start to break down the food, tubies are opening themselves up to serious GI illness.

Regardless of the risk, I was willing to try anything. Also, even though I thought it would be time-consuming, I was excited about actually preparing a real meal rather than opening a can. I'd heard all sorts of good things about the Vitamix online. I was hesitant to pay $700 for a brand new blender, but I remembered that a friend in Colorado, Julie, had a Vitamix that she said she rarely used. I asked Julie if she'd donate her Vitamix to me and she agreed (thanks again Julie and Mike if you're reading this!!! It's a little more beat up after daily use, but running fine!). I was in business!

I think my first meal was chicken I'd softened up real nice in the slow cooker (I didn't fully appreciate the power of the Vitamix and thought soft foods were the way to go). What a difference real food made!!! No nausea, and I could take much more volume into my stomach without feeling sick. With Ensure, I could barely handle 24 oz of fluids, but with a blender I could do two, even three, times that amount. I felt full and satisfied after my meal whereas formula never left me sated, only sick and dreading the next feeding.

My religion is blenderized diets and this is my God

I started experimenting with my meals. I didn't really care about being healthy and this was before I started eating gluten-free (more about that in a future post), so I was putting donuts together with cheeseburgers and chips, or pizza and wine with cookies. You name it, the Vitamix would blend it. I got excited about food again. For the first time, I started cooking for the family.

Betsy and I were both seriously lacking when it came to cooking (I mostly married her for her looks). I started getting recipes online and cooking dinner every night. I have grown to love cooking, even though I never taste the food I cook. Betsy and Grace are my taste testers. If they don't like my meals, I just put on the guilt trip. "That's fine," I mumble forlornly, "I slaved away all day in the kitchen making a meal I'll never be able to enjoy, and you think it's a little too salty. WHY DON'T YOU MAKE YOUR OWN DAMN MEAL NEXT TIME?!? OH, YOU WANNA CRY NOW?!?"

Sorry, where was I? Right, real food is awesome! I only eat 3 meals a day, like a normal person. I do have a can of formula in the morning to save some time, but no more nausea. My syringe holder allows me to feed myself wherever I find a table. The mortar and pestle allow me to crush my own pills. I enjoy a level of independence I never had in 2009.

And now, for more than a year, I've been taking the Vitamix out with me. It serves as my "teeth" and lets me eat with Betsy and Grace.

BTW, the whole time I've been eating real food from a blender (more than three years now), I've never had a single problem with GI issues from "non sterile" blends.