063: How I Beat the Feeding Tube for Good!

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.

Chapters

• 0:00 Removing the feeding tube permanently
• 1:10 Eight years of medical formula
• 3:10 Breakthrough medication changes everything
• 4:35 G-tube placement and eventual removal
• 6:35 Coping through swimming, music and faith
• 9:15 Finding community and support organizations

Transcript

Speaker 1: 0:00

I felt confident enough where I was eating enough and my uh guess my nutrition levels were high enough that I was able to remove the feeding tube, uh, the G2, for good. So I have a little scar. It's like my second belly button, um. But yeah, I, I, I love the scar. It's, it's kind of cool. It's, it's, um, a little reminder of where I've come from.

Speaker 2: 0:24

What about? I guess I'm curious with you know you're in a high school years here, and eight years was mentioned, when from 12, so that'd been 12 to 20. Yeah, what changed at that point eight years later?

Speaker 1: 0:43

Yeah. So 12 to 15 was kind of like the getting restricted. And then 15 was when the eight years started of just medical formula, rice and pears, Um, yeah, yeah, so it was. It was 15 to 23. So for eight years really I just kind of came to terms with, you know, probably never gonna tolerate more food again, Um, and just kind of live my life. For the most part I I kind of stopped food trialing and started just cheating on my diet and just being like, screw it, I'm going to go.

Speaker 1: 1:19

I grew up in Texas so I'd go eat at Whataburger and, uh, just down some really good food there. And then I'd go eat at Whataburger and just down some really good food there and I'd be thrown up in the toilet that night and just kind of be like, hey, it was worth it, I needed it. And my friends would be like, oh no, Zach, you're not going to like that later on, but they kind of thought it was funny. But yeah, I kind of just like stopped putting in the effort for food trialing and just kind of living life.

Speaker 1: 1:47

Still lots of ups and downs. It's such a mental burden to be around people eating, but I definitely like I learned so much in these eight years. It was so difficult, but it taught me one being negative doesn't change your circumstance. That's kind of how I was from 12 to 15. And then I was forced on medical formula and I was like geez well, like, if I can't change anything, why should I be an annoying person to be around? I should try, and you know, focus on what I can control, connect with people. That that should be my focus when going out to eat the rice cakes. Now, so it's not as awkward, but still struggled a lot mentally.

Speaker 1: 2:30

And, yeah, swimming was a good outlet. But throughout those eight years, just kind of navigating life, I ended up going to college for a year and then I went on a church service mission for about a year and a half and when I came back I was living my life again, trying to, you know, just move forward. But in 2020, there was a it wasn't a clinical trial, but my doctor, I should say I moved to Utah to go to school and so I ended up meeting with doctors in Utah and they ended up having some samples of a medicine that seemed pretty promising and they had tried everything in the book. I'm kind of a rare case with this chronic illness, and so they're like Zach, we want you to 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 tolerate food, at least for the first time, which was pretty incredible.

Speaker 2: 3:28

Wow, Wow, yeah, that is incredible. So when you said for the first time you could tolerate it no side effects, no sickness, no pains or was it just kind of, I guess, was it dulling those things?

Speaker 1: 3:42

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 pain and, 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 absorbing the nutrients very well. So I still, you know, drink the medical formula and push forward with that for the nutritional side of it. But just, I guess 2024 now so it'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 to restrict it anymore.

Speaker 2: 4:18

Wow, that's amazing. That's amazing, this medicine. And he said to it they you tried 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 with time?

Speaker 1: 4:35

Yeah, so when I I uh, I should mention, at the end of high school, I drank medical formula 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't think I can drink this by mouth without going insane, like I am so sick of this nasty vanilla flavor. And so I ended up um deciding to 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 just kind of inject the formula in Um. But after 2020, I started reintroducing foods. I still had that uh port or G tube, uh, just to inject the formula.

Speaker 1: 5:25

And it wasn't until I was nervous because, you know, eating, eating again is great, but it's also nerve wracking because what if? What if things go back to where they were? What if I, you know, can't eat food again? What if something goes wrong? Because for so long I didn't have control? And so, uh, after about two years, in 2022, I felt confident enough where I was eating enough and my uh guess my nutrition levels were high enough that I was able to remove the feeding tube uh, the G2 for good. So I have a little scar. It's like my second belly button, um. But yeah, I, I, I love the scar. It's. It's kind of cool. It's, it's um, a little reminder of where I've come from. But yeah, I got that out in 2022 and I've just been relying on food only for the past two years.

Speaker 2: 6:14

Well, congratulations, you know, getting to that point, and obviously it wasn't an easy road to get there, um, and if you you said you cope with swimming kind of helped you. It was your kind of outlet, you know, in the high school years, right. But what did you do to cope outside of that when you went to college, right, and as you get into your twenties, like how are you coping with it?

Speaker 1: 6:37

Yeah.

Speaker 2: 6:38

Emotionally, mentally, you know.

Speaker 1: 6:41

For sure. Um, so swimming was a good, a great outlet. But after high school I wanted to swim in college, which was actually one of the reasons I wanted to get a feeding tube so I could inject a ton of formula and get big, so to speak. Um, but I wasn't. I wasn't quite fast enough to to swim in college, which was which is great. That would have been a huge commitment, and so it was nice to kind of take a break from swimming.

Speaker 1: 7:08

Aside from swimming, I like to make raps a lot more. So high school years, beginning of college, of just like my rice, cakes and pears situation and you know how hard it is to be around people who can eat food kind of making jokes, of like I feel like I'm a dog eating the same thing every day. So I'd kind of like, if there's a 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 of music, but I would just do it. If it felt like a release, just do it. It felt like a release.

Speaker 1: 7:48

Um, another way I coped was really just like allowing myself to feel, allowing myself to feel frustrated and giving myself, um, the opportunity and space to just let it out. Um, whether that was going on a drive or venting to my mom, I had a great support system. Um, I usually felt better. It was almost like my cup of tolerance was filling.

Speaker 1: 8:07

All the time of of this is really difficult. I don't feel well and then it would start overflowing and I that was when I was like, hey, I gotta, I gotta get this out somehow. So that was really nice, I'd say. The other, the other outlet was, uh, spirituality and just kind of prayer, um, understanding that God, my belief, is I. I thought God was out to get me at the beginning, I thought he hated me, I thought he was punishing me, and then I kind of came to the realization, through prayer, scripture and just kind of, you know, trying to connect with my faith, that that's not the case we this is just the reality of life, things just don't always go our way, and so I would get strength with uh, with that spiritually, to just keep moving forward.

Speaker 2: 8:48

And so I would get strength with that spiritually to just keep moving forward. Wonderful and the fact that you had that outlet and, once again, you know, reinforced you know, obviously no one is out to get you right Like this wasn't just one of the things that happened. So, when you were coping with this and he's going to the doctor and all these things that you've done as far as on the long journey you had, um, have you ever met anyone with your condition or illness, disease? Yeah, along the way, that's a great question.

Speaker 1: 9:17

Um, not so high school, no, oh, there was one person who was actually on mtv. It was like the series true life, where they show like these different situations with people. Like there's some weird episodes where a guy eats couch cushions and then where someone else is like like allergic to everything. Which happened to be this guy. His name was Zeke Um, but I met him in person and at the time I was too cool. I was like I don't want to like be friends with people who can't eat, uh, but I realized shortly. You know I probably should count my blessings here. But, um, going to college, I think I I met a few people. One that one memory that pops up is I went to a water park and I had the G tube and and, uh, I owned 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 he goes hey, look, and he points to his stomach and he has the.

Speaker 1: 10:17

This very small community that is struggling, uh, just as much or if not more than me, and uh, it was really cool to be able to kind of like connect and laugh about 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've met 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 that condition? 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 great they're trying to help find a cure, and Cured, which is my favorite. I mean they're all great, they're trying to help find a cure, but Cured I really like because the founder has a child with it and all of their, all the proceeds 100% go to research, so there's no cost that or everything you're donating is going towards an actual cure.

Speaker 2: 11:26

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