My Daily Bread - what not swallowing means

My Feeding Tube Journey and Faith

Today, I want to share some details about my feeding tube and how I've been eating for the last 15 years. I'll begin with the story of its placement after my motorcycle accident in 2009.

2009, My First Outing to a Bookstore

The Initial Feeding Tube Placement

After my accident on Friday, July 24, 2009, I was unable to swallow or eat, and I needed another way to receive sustenance. The first attempt to place the feeding tube was successful. However, doctors had remarked that people’s bodies generally didn’t accept it on the first try. Prayers were answered—not in the way many had hoped, as I still couldn’t eat by mouth, but I was able to receive nutrition through the tube.

Understanding My Condition: The Upper Esophageal Sphincter

The reason I cannot swallow is due to my upper esophageal sphincter (UES). To explain, your esophagus has muscles at both ends—one at the top near the throat and one at the bottom near the stomach. My UES is clamped shut and doesn’t open, whereas normally, it would relax and open based on the size of food in the mouth.

Feeding Tube and Adaptation Journey

My feeding tube is a MicKey, described as a 3 cm 20 French, and it consists of a small button that goes directly into my belly, held in place by a balloon filled with distilled water. I have it changed at least annually or as needed.

When it's time to eat, I hook an extension tube to the button, locking it in place, and then attach a syringe to the extension tube to pour my liquid food in. A lot of times, the liquid will gravity feed into my stomach, but if the food is thick and the process becomes slow and time-consuming, I can speed it up by using the syringe to push the liquid in quicker.

Over time, I have had to adapt my liquid diet based on what my body could tolerate. In the beginning, I had to eat 4 or 5 meals a day, as my stomach couldn’t handle all of the liquid in one sitting. I started out with synthetic, man-made formulas that provided all the necessary nutrients my body needed. However, as my stomach adapted, I gradually reduced my meals from 5 to 4, and now to 3 meals a day. I've transitioned to a real food blend, which is not synthetic, but actual food that’s blended up.

Daily Food Options

I have six different flavors to choose from, varying in calorie intake from 320 to 340 calories per nine ounce pouch:

1. eggs, apples, oats, and zucchini

2. chicken, carrots, rice, and oranges

3. turkey, sweet potatoes, green beans, and peaches

4. quinoa, hemp, kale, and grapes

5. salmon, oats, squash, and pomegranate 

6. beef, potatoes, spinach, and pineapple

Each meal needs to be thinned with 8 ounces of water. I also supplement with protein powder and high-protein drinks like Ensure to meet my dietary needs, aiming for 2,500 calories a day. Initially, I lost 20 pounds after the accident, but I’ve since regained them, though the last 10 pounds took years to put back on.

Managing Saliva Production and Swallowing Challenges

Due to my inability to swallow, I carry a styrofoam cup (preferably 10-12 oz. in size) with me at all times to discreetly spit out saliva since it pools in my mouth. I buy the cups in bulk, about 1000 at a time, and I try to use around 10 per day, although I aim to keep that number as low as possible. A ready-to-use cup includes a half sheet of paper towel inserted into the cup to help absorb the contents.

My only prescription, the scopalamine patch, helps manage my saliva production. Though it’s typically prescribed for motion sickness, it helps reduce my saliva. I wear the patch behind my ear for three days at a time, alternating between the left and right side of my body.

On Day 1, the patch almost completely dries up my saliva, but by Day 3, I can tell it’s time to change it. Interestingly, weather affects my saliva production as well—on rainy or drizzly days, I tend to have more saliva.

When I can’t get the patch, saliva production increases significantly, and there have been moments where it’s brought me to tears. Yet, through it all, God has provided.

"The Lord is my shepherd; I shall not want." (Psalm 23:1)

Understanding the Medical Aspect of My Condition

Doctors have expressed concern about the risk of aspiration, which means that taking things by mouth could lead to food entering my trachea and lungs. Normally, people feel a sensation when this happens and cough to prevent it, but I don’t have any sensation in that area, so I wouldn’t know if something entered my lungs. Though I can taste food, I have to ensure that I cough and spit it out to prevent this risk.

Over the years, I’ve undergone multiple Swallow Studies, where various foods like applesauce and yogurt and ice chips are covered with barium and observed via x-ray. This allows doctors to track the movement of food through my body. The films have shown that a small trickle of liquid does go down my esophagus, but it’s not enough to sustain me.

I have also undergone procedures where an ear, nose, and throat physician injected Botox into my upper esophageal sphincter (UES) muscle to relax it, followed by stretching it with various-sized gauges. In the last procedure, the largest gauge, which is the size of a garden hose, was used. Unfortunately, these procedures didn’t produce lasting results. However, through it all, I have never had pneumonia, which surprises many doctors I’ve spoken with.

Faith and Perseverance

Some doctors and therapists have mentioned that my lack of swallowing may be nerve-related, and nerves can regenerate, albeit very slowly. Despite the challenges and lack of a clear medical reason for my condition, I know that God has not forgotten me. It might seem like He has, but I am certain He knows exactly who I am, where I am, and what I am going through. I trust that He is not a halfway God—He is a God of restoration.

The Bible reminds us, "Man shall not live by bread alone, but by every word that proceedeth out of the mouth of God." (Matthew 4:4). He has sustained me all these years, and I know He will not fail me now. I rest in His promises, knowing that in His timing, all things will be as they should.

Made for a Co-worker's Baby Shower, 2009

A Passion for Cooking and Baking

As strange as it might seem, I have always loved baking and cooking. So much so that my first outing after being admitted to the hospital in Georgia was to a bookstore, where I bought—what else—a cookbook!

Baking and cooking even became part of my therapy. The process of creating something from scratch and sharing it with others has always brought me joy. In fact, my co-workers even put together a dessert cookbook to help raise funds for my medical expenses.

A few years later, I went a step further and wrote and published my own cookbook. Unlike the fundraiser cookbook, this one is filled with all types of recipes, not just desserts. Every recipe in the book has been tested and made by me, and the photos are of food that I cooked and photographed myself. It was such a rewarding experience, and I still have copies available for anyone who might be interested.

"And whatsoever ye do, do it heartily, as to the Lord, and not unto men." (Colossians 3:23)

Creations Made at Therapy, 2013 

F.J.'s Salad: A Local Inspiration

One recipe that stands out to me is something I named F.J.'s Salad. It was inspired by a dish I enjoyed at a small, local restaurant. The combination of ingredients was so perfectly balanced and delicious that every time I thought about the dish, my mouth would physically water. It’s a super yummy salad on its own or paired with a meat of your choice, and it just had to find a place in my cookbook. Sometimes, it's those simple but perfectly crafted dishes that leave a lasting impression.

"O taste and see that the Lord is good: blessed is the man that trusteth in him." (Psalm 34:8)

Apple Crumb Pie: A Recipe for Success

Another recipe that I’m particularly proud of is my Apple Crumb Pie. I baked this pie over and over again, tweaking the ingredients each time until I had perfected the final concoction. This recipe became especially significant when I decided to enter it into my very first cooking contest. To my surprise and delight, I won third place! It was such a validating experience, and it reaffirmed my love for baking and the joy it brings.

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"Commit thy works unto the Lord, and thy thoughts shall be established." (Proverbs 16:3)

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Is It Painful?

A question that might be in your mind is, "Is it painful?"

The answer is no. Hooking up all the special equipment I need to receive nourishment doesn’t feel bad, nor does it cause any pain. In fact, it doesn’t really have much of a sensation at all—it’s just something that has to be done.

My Sensations Around Feeding

I can still feel when I’m hungry, and I can tell when I’m full, just like anyone else. I can also feel the temperature of what enters my stomach, which is why it’s important that the liquids I consume are not too hot. Ideally, they need to be at room temperature—not too hot and not too cold.

But even with all of this, there is no pain involved.

Eating as a Social Event

You might also wonder how I feel when I’m around others who are eating. Am I bothered by watching others eat or smelling food? The simple answer is no. I’ve gotten used to it over the years. For many people, eating is a social event, and I completely understand that.

However, some people feel bad for me when they see that I can’t eat the same way they do. They are sad or uncomfortable, thinking I might miss the experience of eating food by mouth. Many times, people will offer me food or drink, and I just politely decline.

By looking at me, you wouldn’t be able to tell that I can’t eat by mouth, so it’s only natural that people are surprised when they learn about my situation.

Dish Duty, 2013

A Surprising Communion Experience: An Unexpected Reaction and a Glimmer of Hope

As many believers do, I participate in the Lord's Supper, or Communion, by taking a small wafer representing the body of Christ and a small amount of grape juice representing His blood. After receiving Communion, I always take care to cough and clear out any leftover particles to avoid the risk of aspiration, as you've read swallowing is something I cannot do by mouth.

However, during one particular Communion, something unusual happened.

An Unexpected Change

On this day, the pastor decided to change the brand of grape juice from what had been used for many years. After I took part in the Communion, within minutes, I developed a severe allergic reaction. My palms turned red and itchy, my breathing became labored, and I began coughing more frequently. The reaction grew so intense that my lips swelled—honestly, I ended up looking like Bubba Gump from the movie Forrest Gump!

Recognizing what was happening, I immediately crushed some Benadryl tablets, liquefied them, and administered them through my feeding tube to counteract the reaction.

A Glimmer of Hope

This experience left me wondering: How could I have reacted so severely and so quickly unless some of the grape juice made its way into my stomach? As someone who cannot swallow, this reaction suggested to me that, perhaps, a small amount of the juice had indeed gone down—just enough to cause the allergic response.

In my heart, I feel that this incident is a sign of hope, a subtle reminder from God that, one day, the pathway to swallowing may open up again. As I reflected on the situation, I was reminded of this verse:

"For with God nothing shall be impossible." (Luke 1:37)

If God can part the Red Sea, heal the blind, and raise the dead, why couldn't He restore the function of my esophagus? He made it, after all. This unexpected reaction during Communion reminds me that healing can come in ways we least expect. Perhaps what is now a trickle may one day become a highway of healing.

Faith for the Future

While I don’t know when or how it might happen, I hold onto hope, grounded in the promises of God’s Word:

"Behold, I will do a new thing; now it shall spring forth; shall ye not know it? I will even make a way in the wilderness, and rivers in the desert." (Isaiah 43:19)

If God can make a way in the wilderness, surely He can make a way for healing in my body. This moment, though frightening at the time, has become a source of encouragement and faith for me. I continue to trust in God’s timing and His perfect plan for my life.

Feel free to ask a question, if there’s something I didn’t answer.

Tell me, what's your passion?

Be encouraged. 🧡