063: How I Beat the Feeding Tube for Good!

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What happens when the simple act of eating becomes impossible? For eight years, Zach lived on medical formula, rice cakes, and pears due to a severe case of eosinophilic esophagitis (EOE), a chronic illness that drastically restricted his diet and transformed his relationship with food and his own body.

Zach's powerful story begins at age 15, when doctors determined he needed to follow an extremely limited diet to manage his condition. The physical limitations were challenging, but the mental and emotional toll of being unable to participate in one of life's most fundamental and social activities proved equally difficult. "It's such a mental burden to be around people eating," he reflects, describing years of watching friends enjoy meals while he consumed the same bland items day after day.

Throughout this journey, Zach developed remarkable resilience and perspective. Swimming became his outlet during high school, while creative expression through rap music about his unique dietary situation provided both humor and release. When medical interventions became necessary, he embraced a feeding tube to improve his quality of life, even as he occasionally rebelled by "cheating" on his diet, accepting the painful consequences as sometimes "worth it" for moments of normalcy. His outlook transformed from questioning why this happened to him to embracing a philosophy that "being negative doesn't change your circumstance."

The turning point arrived unexpectedly in 2020 when doctors offered an experimental medication that gradually allowed him to tolerate food again. Two years later, Zach had his feeding tube removed, leaving behind a scar he now cherishes as "like my second belly button...a little reminder of where I've come from." His story illuminates not just the physical challenges of chronic illness, but the profound mental journey of acceptance, adaptation, and ultimately hope even in the most restricting circumstances.

Have you faced health challenges that transformed your relationship with something most people take for granted? Share your story or thoughts about Zach's powerful journey of resilience in the comments, or connect with organizations like Cured that support research for eosinophilic conditions.

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Episode Transcript

Speaker 1 (00:00):
I felt confident enough where I was eating enough
and my uh guess my nutritionlevels were high enough that I
was able to remove the feedingtube, uh, the G2, for good.
So I have a little scar.
It's like my second bellybutton, um.
But yeah, I, I, I love the scar.
It's, it's kind of cool.
It's, it's, um, a littlereminder of where I've come from

(00:21):
.

Speaker 2 (00:24):
What about?
I guess I'm curious with youknow you're in a high school
years here, and eight years wasmentioned, when from 12, so
that'd been 12 to 20.
Yeah, what changed at thatpoint eight years later?

Speaker 1 (00:43):
Yeah.
So 12 to 15 was kind of likethe getting restricted.
And then 15 was when the eightyears started of just medical
formula, rice and pears, Um,yeah, yeah, so it was.
It was 15 to 23.
So for eight years really Ijust kind of came to terms with,
you know, probably never gonnatolerate more food again, Um,

(01:09):
and just kind of live my life.
For the most part I I kind ofstopped food trialing and
started just cheating on my dietand just being like, screw it,
I'm going to go.
I grew up in Texas so I'd go eatat Whataburger and, uh, just
down some really good food there.
And then I'd go eat atWhataburger and just down some
really good food there and I'dbe thrown up in the toilet that
night and just kind of be like,hey, it was worth it, I needed

(01:29):
it.
And my friends would be like,oh no, Zach, you're not going to
like that later on, but theykind of thought it was funny.
But yeah, I kind of just likestopped putting in the effort
for food trialing and just kindof living life.
Still lots of ups and downs.
It's such a mental burden to bearound people eating, but I

(01:54):
definitely like I learned somuch in these eight years.
It was so difficult, but ittaught me one being negative
doesn't change your circumstance.
That's kind of how I was from12 to 15.
And then I was forced onmedical formula and I was like
geez well, like, if I can'tchange anything, why should I be
an annoying person to be around?

(02:16):
I should try, and you know,focus on what I can control,
connect with people.
That that should be my focuswhen going out to eat the rice
cakes.
Now, so it's not as awkward,but still struggled a lot
mentally.
And, yeah, swimming was a goodoutlet.
But throughout those eightyears, just kind of navigating
life, I ended up going tocollege for a year and then I

(02:39):
went on a church service missionfor about a year and a half and
when I came back I was livingmy life again, trying to, you
know, just move forward.
But in 2020, there was a itwasn't a clinical trial, but my
doctor, I should say I moved toUtah to go to school and so I

(03:02):
ended up meeting with doctors inUtah and they ended up having
some samples of a medicine thatseemed pretty promising and they
had tried everything in thebook.
I'm kind of a rare case withthis chronic illness, and so
they're like Zach, we want youto eat something again.
So let's just try this out.
And I didn't think much of it,and and it ended up helping me

(03:23):
tolerate food, at least for thefirst time, which was pretty
incredible.

Speaker 2 (03:28):
Wow, Wow, yeah, that is incredible.
So when you said for the firsttime you could tolerate it no
side effects, no sickness, nopains or was it just kind of, I
guess, was it dulling thosethings?

Speaker 1 (03:42):
I'd say dulling at first, but after about six
months I stopped.
Was it dulling those things?
I'd say dulling at first, Um,but after about six months, um,
I stopped having stomach painand, uh, I'd rarely have stomach
pain, but I I'd still get, uh,quite a bit of fatigue, Um, so I
wasn't sure if I was absorbingthe nutrients very well.
So I still, you know, drink themedical formula and push

(04:03):
forward with that for thenutritional side of it.
But just, I guess 2024 now soit'll be four years in about a
month that I've been able to,you know, increase my diet to
the point where I don't have torestrict it anymore.

Speaker 2 (04:18):
Wow, that's amazing.
That's amazing, this medicine.
And he said to it they youtried it, you had good results
from it.
You continue to take that today.
Is it the formula kind of there, the medicine stayed the same,
or is that kind of changed withtime?

Speaker 1 (04:35):
Yeah, so when I I uh, I should mention, at the end of
high school, I drank medicalformula by mouth for three years
up to that point, so I was 18,about to go to college, and uh,
I remember thinking I don'tthink I can drink this by mouth
without going insane, like I amso sick of this nasty vanilla

(04:56):
flavor.
And so I ended up um decidingto get a G tube or a feeding
tube, uh, just to make it easier, so I wouldn't have to taste it
anymore.
And uh, so after high school,that was kind of helpful to not
be able to taste it and justkind of inject the formula in Um
.
But after 2020, I startedreintroducing foods.

(05:20):
I still had that uh port or Gtube, uh, just to inject the
formula.
And it wasn't until I wasnervous because, you know,
eating, eating again is great,but it's also nerve wracking
because what if?
What if things go back to wherethey were?
What if I, you know, can't eatfood again?
What if something goes wrong?
Because for so long I didn'thave control?
And so, uh, after about twoyears, in 2022, I felt confident

(05:47):
enough where I was eatingenough and my uh guess my
nutrition levels were highenough that I was able to remove
the feeding tube uh, the G2 forgood.
So I have a little scar.
It's like my second bellybutton, um.
But yeah, I, I, I love the scar.
It's.
It's kind of cool.
It's, it's um, a littlereminder of where I've come from

(06:07):
.
But yeah, I got that out in2022 and I've just been relying
on food only for the past twoyears.

Speaker 2 (06:14):
Well, congratulations , you know, getting to that
point, and obviously it wasn'tan easy road to get there, um,
and if you you said you copewith swimming kind of helped you
.
It was your kind of outlet, youknow, in the high school years,
right.
But what did you do to copeoutside of that when you went to
college, right, and as you getinto your twenties, like how are

(06:36):
you coping with it?

Speaker 1 (06:37):
Yeah.

Speaker 2 (06:38):
Emotionally, mentally , you know.

Speaker 1 (06:41):
For sure.
Um, so swimming was a good, agreat outlet.
But after high school I wantedto swim in college, which was
actually one of the reasons Iwanted to get a feeding tube so
I could inject a ton of formulaand get big, so to speak.
Um, but I wasn't.
I wasn't quite fast enough toto swim in college, which was

(07:02):
which is great.
That would have been a hugecommitment, and so it was nice
to kind of take a break fromswimming.
Aside from swimming, I like tomake raps a lot more.
So high school years, beginningof college, of just like my
rice, cakes and pears situationand you know how hard it is to

(07:25):
be around people who can eatfood kind of making jokes, of
like I feel like I'm a dogeating the same thing every day.
So I'd kind of like, if there'sa niche in the music industry
for people who can only eat rice, cakes and pears, I was that
guy.
So it's very specific type ofmusic, but I would just do it.
If it felt like a release, justdo it.

(07:48):
It felt like a release.
Um, another way I coped wasreally just like allowing myself
to feel, allowing myself tofeel frustrated and giving
myself, um, the opportunity andspace to just let it out.
Um, whether that was going on adrive or venting to my mom, I
had a great support system.
Um, I usually felt better.
It was almost like my cup oftolerance was filling.
All the time of of this isreally difficult.

(08:09):
I don't feel well and then itwould start overflowing and I
that was when I was like, hey, Igotta, I gotta get this out
somehow.
So that was really nice, I'dsay.
The other, the other outlet was, uh, spirituality and just kind
of prayer, um, understandingthat God, my belief, is I.
I thought God was out to get meat the beginning, I thought he

(08:30):
hated me, I thought he waspunishing me, and then I kind of
came to the realization,through prayer, scripture and
just kind of, you know, tryingto connect with my faith, that
that's not the case we this isjust the reality of life, things
just don't always go our way,and so I would get strength with
uh, with that spiritually, tojust keep moving forward.

Speaker 2 (08:48):
And so I would get strength with that spiritually
to just keep moving forward.
Wonderful and the fact that youhad that outlet and, once again
, you know, reinforced you know,obviously no one is out to get
you right Like this wasn't justone of the things that happened.
So, when you were coping withthis and he's going to the
doctor and all these things thatyou've done as far as on the
long journey you had, um, haveyou ever met anyone with your

(09:12):
condition or illness, disease?
Yeah, along the way, that's agreat question.

Speaker 1 (09:17):
Um, not so high school, no, oh, there was one
person who was actually on mtv.
It was like the series truelife, where they show like these
different situations withpeople.
Like there's some weirdepisodes where a guy eats couch
cushions and then where someoneelse is like like allergic to
everything.
Which happened to be this guy.

(09:37):
His name was Zeke Um, but I methim in person and at the time I
was too cool.
I was like I don't want to likebe friends with people who
can't eat, uh, but I realizedshortly.
You know I probably shouldcount my blessings here.
But, um, going to college, Ithink I I met a few people.
One that one memory that popsup is I went to a water park and

(10:01):
I had the G tube and and, uh, Iowned it.
I didn't really care.
Uh, people always stared.
But I remember, in the line, uh, waiting for a water slide, a
kid taps on my shoulder and hegoes hey, look, and he points to
his stomach and he has the.
This very small community thatis struggling, uh, just as much

(10:31):
or if not more than me, and uh,it was really cool to be able to
kind of like connect and laughabout our situation and kind of
just like form our little club,so to speak.
Um, but that was really cool.
But I I, over the years I'vemet more and more people who
have EOE Just not as severe.

Speaker 2 (10:53):
Is there any?
I guess organizations,foundations or anything to
support those with thatcondition?
Yeah, yeah.

Speaker 1 (10:57):
So there's two solid organizations.
One is called AppFed and Cured,which is my favorite.
I mean they're all greatthey're trying to help find a
cure, and Cured, which is myfavorite.
I mean they're all great,they're trying to help find a
cure, but Cured I really likebecause the founder has a child
with it and all of their, allthe proceeds 100% go to research

(11:18):
, so there's no cost that oreverything you're donating is
going towards an actual cure.

Speaker 2 (11:26):
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(11:49):
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