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| Ready to go with my lunch box. |
My Journey with a Feeding Tube
Questions showcase a natural curiosity; hopefully I can
provide answers that may help. Since July 2009, all my food, drink, and
medications have been taken through a feeding tube. I don’t consume anything
by mouth—not even water. However, because I love to cook and bake, I do
taste food. But when I do, I have to be extremely careful to spit it out.
This caution is necessary because my esophagus does not
function the way it should. Normally, when you swallow, food travels down the
esophagus into the stomach. If something "goes down the wrong way,"
your body recognizes it and triggers a cough reflex to protect your airway. But
in my case, I wouldn’t feel it if food went into my trachea and toward my
lungs. That’s a major risk, as aspiration can lead to serious complications.
Even though this has been my reality for years, I hold on to faith and trust that God’s plan is perfect. "For with God nothing shall be impossible." (Luke 1:37)
The Swallow Studies
Over the years, I’ve worked with speech therapists and
undergone numerous swallow studies to evaluate my ability to swallow
safely. These tests involve eating different textures—like applesauce,
yogurt, or ice chips—coated with barium, a substance that shows up on X-rays.
As I swallow, the X-ray machine captures real-time images, tracking whether the
food moves safely down my esophagus into my stomach. These swallow studies
provide visual answers to lingering questions.
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| swallow study real-time x-ray example |
Though the tests haven't shown significant progress, I am
reminded of Hebrews 11:1, which says: "Now faith is the
substance of things hoped for, the evidence of things not seen."
I may not see results yet, but that doesn’t mean they aren’t
coming.
Medical Interventions: The ENT Procedures
In addition to speech therapy, I also pursued another
avenue: working with an ear, nose, and throat (ENT) physician to explore a
possible procedure to help.
The procedure involved going under general anesthesia so the
doctor could inject Botox into my upper esophageal sphincter muscle. The
idea was that Botox would relax the muscle for three to six months, potentially
allowing for improved swallowing. However, in my case, the effects never
even lasted the full three months.
While under anesthesia, the doctor would also use a tool
to stretch the esophageal opening. Over several months—and even years—I
underwent this procedure multiple times. Each time, the doctor used a slightly
larger gauge tool, eventually reaching the size of a garden hose in diameter.
Despite all of these efforts, the procedures did not yield
the results we hoped for. I don’t know why they didn’t work, but I do know
that I have not lost hope. Romans 8:28 reminds me: "And we
know that all things work together for good to them that love God, to them who
are the called according to his purpose."
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| throat stretching procedure |
The Possibility of Eating by Mouth Again
I have been told that medically, there is no reason I shouldn’t be able to eat by mouth in the future. The ability to swallow is
controlled by a nerve, and nerves do regenerate—but they do so slowly.
So, will it happen? I don’t know. And I don’t know when. But I do know this: These setbacks have not discouraged me. My feeding tube has not stopped me from living my life fully.
In the meantime, I have many dinner invitations waiting
for me when that day comes! I have been blessed with family and friends who
have promised to shower me with meals when I can finally eat by mouth again. I
may be set for weeks—if not months—of home-cooked food from loved ones! That
thought alone brings joy to my heart.
I hold onto Jeremiah 29:11, which says: "For
I know the thoughts that I think toward you, saith the Lord, thoughts of peace,
and not of evil, to give you an expected end."
Eating Is a Social Experience, and I Love Being Included
At first, I know some people might feel uncomfortable eating
around me because they know I eat differently and don’t want to make me feel
left out. But the truth is—it doesn’t bother me at all! Everyone has to
eat, and I actually enjoy being included in meals, even if I’m not eating in
the same way.
Eating is such a social experience, and I love the
fellowship that comes with it. I don’t mind being invited to restaurants or
going out to eat with friends. The only difference is that I can’t be quite as
spontaneous when it comes to food.
If I know ahead of time that I’ll be out for a while, I pack a lunchbox with my food and tools to administer it. When I meet someone at a restaurant, I either eat beforehand or bring my food with me if I think I’ll need it. But if I don’t have anything packed, that doesn’t mean I can’t still join in and enjoy the company!
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| how the esophagus stretching works |
This experience has taught me a lot about planning, but it
has also taught me about the importance of inclusion. Even though I eat
differently, I still love to sit at the table and share in the joy of a meal. Psalm
133:1 says: "Behold, how good and how pleasant it is for brethren
to dwell together in unity!"
At the end of the day, it’s not just about food—it’s about
the people, the conversations, and the memories made around the table.
I always love when I cook specific dishes or bake to
share with my family. The joy of seeing them enjoy my food and hearing their
feedback makes me feel included in the experience, even if I’m not eating it
myself. Family gatherings that revolve around meals have never made me feel
out of place. I simply pack my food and eat when everyone else is eating—just
in my own way. It’s understood and expected, so it doesn’t feel like a big
deal.
My family has always found creative ways to make sure I
feel celebrated, like when my family found a unique way to celebrate my
birthday. Instead of a traditional cake, they built a "cake" made
entirely of useful items—pens, highlighters, sticky notes, spatulas, and
washcloths. It was such a thoughtful and creative gesture! I’ve also received a
beautiful cake made of flowers before. These moments remind me that there are
always ways to make adjustments that accommodate my needs while still being
part of the celebration.
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| esophagus stretching gauges |
I do have to report that there has been no significant
change in my swallowing ability—at least not yet. But just because there’s
no new update doesn’t mean that nothing is happening. I’m also not brushing it off, but it’s not
something that consumes my thoughts, if that makes sense. It simply is what it
is.
The truth is, I try to be content with where I am while
still striving to move forward in my recovery. I’m not stagnant in any way
when it comes to my inability to eat by mouth. I don’t let it define me, but I
also don’t ignore it. I’m learning to live in the balance—pushing forward while
choosing contentment.
Final Thoughts
I appreciate the kindness and curiosity behind the question,
and I hope this provides some clarity. If there ever comes a day when I can
safely enjoy a meal again, I’ll be sure to share that moment. Until then, I’ll
keep cooking, baking, and living life to the fullest—one tube-fed meal at a
time!
No matter what lies ahead, I rest in Psalm 34:8,
which says: "O taste and see that the Lord is good: blessed is the man
that trusteth in him."
My circumstances have shaped how I think, my perseverance
and faith. I may not taste food the way others do, but I have surely tasted and
seen that the Lord is good. And that is more satisfying than any meal!
[These posts offer more information regarding my feeding tube and swallowing ability. My Daily Bread: what not swallowing means and Sustained by God: my feeding tube life]
Share, are you content?
Be encouraged. 🧡
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