IAmA 19 year old guy with a feeding tube! AMA

Why do you need it? Is it permanent or just temporary?

I need it to help put on weight. I suffer from fail to thrive, I can not gain weight or go in height along with some other health issues that don't help the weight issue. I could list them all if you want me to. EDIT: It's a permanent thing.

Sure.

Edit: I meant sure as in "sure, go ahead and name them", not as in "I don't believe you."

List of things wrong with me: -only one functioning lung -my stomach has been reduced in size:staple and rubber band -(forgot the term) But the tube that vomit would come out has been sealed off -asthma -fail to thrive -acid reflex There's one more but I can't remember what it is.

Jesus Christ. I'm sorry man.

It's cool dude, it really hasn't affected me besides dating. I've grown up with it and it's just made me a better person for it I feel like.

How exactly has it affected your dating?

Well some people think it's weird or ugly so they don't like looking at it, and without giving to much detail when it gets down to the alone time they don't like having it around.

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I had a boyfriend cut off our relationship because he didn't want to be with a guy who needs so much support, it sucks. Also I don't think it's adorable.

Was it a Nissen Fundoplication? Did you have really bad reflux prior to the tube insertion? Were you a premie? I am a speech-language pathologist and work with a lot of young kids who have G-tubes. It is so cool to hear about someone who still has one! I mean, I'm sure it isn't exactly awesome for you...

Yes that's what it is, thanks I couldn't remember what it was called. I had serve reflux prior to it, it's what lead to finding about all my other issues. I was complaining about not feeling so great and we went to the doctor, he was like you have acid reflux but that's not the major issue. It kinda sucks having the G-tube but at times it can fun like at a water park or public pool.

What are some ways that it can be fun?

Sometimes people are brave and walk up to me and ask me about it, I like talking about it. It's better then people staring at it, which has happen often.

I bet!

It's so awkward when people just stare.

I'm a SLP too. Glad I'm not the only one who thought this was kind of cool. :)

Yeah it can be

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Sorry to hear that, ever have any huge issues with it?

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Tube

Hey fellow Gastro tuber :P i'm 24 and still have mine in :(, have mine due to Cystic Fibrosis, along with a lot of others.

Oh wow, how long have you had yours for?

since i was 7... i'm finally at a stable weight now tho, and have been in discussions with my docs for the last 6 months about removing it.. so here's hoping sometime this year it goes.

Oh you've had yours for a few years longer then me but I will never get to mine removed. But I hope you get it out, sir or madam.

hey man, were you a preemie? I was and aside from the collapsed lung I've got or had all the procedures and diagnoses you've gotten (stomach reduction, acid reflux, asthma, vom tube sealed, etc...). Anyway, if you're lucky enough to ever get that tube removed, you'll have one hell of a scar. Here's mine, if you're curious http://i.imgur.com/aL919.png

No I was not a preemie, it was doctor failure to listen to my mother that I has a cough and that's where it just got worst. I don't think I'll be lucky to have it removed, doctor told me I should get use to it fast, that's when I eleven. It's cool to see someone who got rid of their feeding tube.

What age were you when the doctor didn't take your mom seriously?

I was three weeks old, she was 16 and he didn't want to listen to some mother who wasn't ready.

Oh yah good thing you got help. Friend's daughter was failure to thrive and died after 2 months. Definitely sucked.

Wow I'm sorry to hear that, my mom just kept feeding more than a normal baby should have had and that's what I think kept me going. She did her best to just keep me health and did everything she could. I owe her a lot more than any a kid could owe their mother. She has spent more nights by my bed side then I can count.

What kind of food goes in the tube (preparation, etc.)? Any foods that are forbidden? How badly do you miss tasting your meals?

Hope it is temporary.

I use three cans of Isosource 1.5 Cal for one night of feeding. I still eat normal meals and snack, the feeding tube is to help with getting more calories. It's a permanent thing.

Does it hurt?

Er some times, like when i pull on it. I've had a few times where something got poured onto it and it burned like there was no tomorrow.

Aww. Best wishes!

Thanks, it's ok I'm use to it.

How much have the doctors been poking at you? Any longer testing to figure out what exactly is wrong with you? Regular roundtrips to various doctors every few months?

Failing to thrive is not really a diagnosis, there has got to be an underlying cause. There are some weird metabolical/genetic disorders out there that are really hard to diagnose.

I have some family members with a ton of medical issues, I know fully well what an odyssee it can be getting a diagnosis.

How long has yours been?

I had one med student write his paper on me, he got a B. There's no real testing need to be done, it's just I can't gain weight or place on height and with everything else it just makes it worse. If they ever found out what the underlying cause was they have not told me, it's been at lest eight to nine years since I learned about my fail to thrive.

What does "place on height" mean?

I wasn't growing, because of failer to thrive I wasn'g going to hit puberty.

have you hit puberty?

Yes I have, a little latter then I should, two years. But hell I'm glad I'm not 5 foot and only 60lbs anymore.

What's your current height/weight?

I'm 6'2" and 150 something pounds.

Wasn't expecting you to be so tall. Glad you've overcome.

Er I wish I was a little short, I look like a walking skeleton.

shit man. I was 6'2" and about 140 up until I was 28 years old. I couldn't gain weight my entire life. No doctor I talked to believed I had a problem. I felt very puny and weak all the time, but they just told me to "eat more". Of course you probably know that it is impossible to "eat more".

I started taking Cyproheptadine and I put on a little over 20 lbs in just two months. granted I also tried to eat as much as I could too. It's nothing but an old antihistime with the side effect of appetite increase. The weight I put on was solid and stuck. Im about 162 now and I feel a thousand times better. I never get the "Im so weak, I'm about to pass out feeling" anymore. I'm sure I could use it to help me eat more, but I feel go right here, so I'm staying for now.

I forgot to mention this and it would make more sense. But I lose weight like crazy, I lost 10 lbs in three days while being of my machine.

Wow, I'm 6'2" and 140.... Also a guy. Now I feel like somethings wrong!

I forgot to mention it but I can't keep weight that I put on, I lose weight faster than I gain.

What is your height and weight?

Current height and weight is 6'2" and 152 lbs. When I first started when I was eleven I was 5' something and 60 lbs.

At any point, but perhaps especially as a newborn, did the doctors assess your health and say "he only has ________ months/years that we expect him to live"?? And are you expected to live a long and full life now that you've made it to 19? Sorry if that's morbid... I just think doctors throw out arbitrary life expectancy numbers more often than not, it seems.

For what I know no they didn't place a time on how long I would live, it's always been "he'll just always be sick or have something wrong"

Ever put straight spirits in there, seems like a good way to get plastered really fast..

No I have not, mostly due to no access to it and it seems like a bad idea.

Yeah.. Uhh.. I'm no MD, but if you value your life I'd say don't try that.

Like I said it seems like a bad idea, but when I get old and cranky I might then.

Just be sure to put Philgarber in your will first.

I have no idea who that is, let me google it.

..Huh? Woosh

<<< It's my username, haha. Also my name.

I'm feeling pretty stupid right now, I should be smacked.

Did you actually google me?

/Arrogant, arrogant, waste of air me.

Yes,yes i did. I don't normally look at usernames.

Only because this is ONLINE and really, who cares...but you will be VERY popular at our beer chugging parties if you can actually get alco in there.

Well college is only a year away so we'll see.

I know this sounds funny/over cautious, but if you do get involved with a heavy drinking set, you might want to really take care.

People do the most fucking stupid things when they are drunk, like pouring alcohol into a passed-out friend's mouth and choking/poisoning them.

I could see some fuckwit trying to pour alcohol into your tube or something. So just take care.

I mention this somewhere else but I think for the most part I'll be the guy not drinking, unless I'm safe at home or a good friends house. I don't want to lose a friend to a drunk driving accident.

who said anything about college. Im 16.

Not really up for the whole drinking under the age with high school friends. Just a bad idea to me.

Honestly, i don't even drink that much. Its fun to just watch people get hammered.

I watch people it's fun that way.

Is there a limit on what you can or cant eat?

Surprisingly no, some of the other people I have talked to had to limit what they could eat. I on the other hand was told to eat anything I could get my hands on growing up and I have.

How long have you had it?

Since I was eleven or twelve, I can't recall if I got it before or after my birthday in sixth grade.

Are you always hooked up to the feeding tube or do you put it in at certain times throughout the day?

I only hook myself up at night when I'm heading to bed.

How movable is it?

My grandfather had something like that and feared touching it coz i might malign something. How do you tube yourself in the afternoons (lunch?)?

It's pretty movable, 360 degrees. I have to move it often so a skin graft doesn't grow over it or to much for it work right. I tube myself at night when I'm heading to bed.

Heh, "tube myself."

I really didn't think about how that sounded before I posted, oh well.

AHHHH, its movable! run!

Just kidding.

It's ok, first time back to gym in 6th grade I was changing and some asked about and when I turned it half the locker room freaked out.

Someone i knew had his lower intestine hanging out to collect the poop. Thats scary.

Yeah that is but that was 6th grade so pretty much any thing from normal is scary.

Wait is that feeding thingy in your belly button?

Oh no, I should had pointed that out. My "sign" is covering up my bell button.

My brain thinks of a million things at one go. Don't you think they should have medical grade connectors by now? (kind of like the matrix)

I wish it, it wouldn't look as bad. If they had one that look like one from the matrix I would love to have it. Matrix is one of my favorite move series.

It actually does not look THAT bad. Someone went out of the way to actually make it look good. its just a little off center. Volunteered at a long term care clinic for kids before. Despite expensive surgery, way worst. They got that plastic wrapping and what not.

I know it doesn't, it's just kinda one of those things I'm self conscious about. The last part confused me a bit, are you saying the kids had some way worst looking or what?

Think: feeding tube down the nose and plastic wrapped surfaces of their skin (due to some condition).

OH, I was given the option between G-tube and down the nose. It wasn't a hard pick. I'm sorry to hear about the kids though.

Yea and liquid? pfff. Direct to the socket.

Pretty much.

wtf?! do you ever have any digestive problems, nausea, or pain? can you feel the food being poured into you?

I have nausea all the time, I got over it pretty fast thanks to practice breathing. If the formula is to cold or to warm yes I can feel it.

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Nothing more than liquid or at least I know, I mean I haven't tired to place anything done it.

Dietitian here. Please don't try to put things that aren't your TF formula or water flushes in your tube! You don't want it to clog! :)

Glad to see someone already recommended the Oley foundation. They are a fantastic organization.

Alright I figured it was a bad idea, kinda why I haven't. Yeah I never heard of it till that person posted a link to it.

I have heard of people clogging tubes with applesauce (?!!) and trying to unclog them with pipe cleaners and wires.... these were longer tubes, though, not the button tube you have.

Still, take care of it :) (Side note - this is my favorite area of nutrition and my specialty!)

Do you have a dietitian that you work with, or are you just followed by the home health agency?

The G-tube is only part of the whole set up, I can post pictures of the get up if you would like. I had an army of doctors working on me, a dietitian was just one of them.

Do you have a continuous feed overnight or do you get it all at once?

I continuous feed overnight while I sleep.

If you toss and turn does it mess things up?

I was in a hospital overnight twice and ripped out my IV both times. I can't imagine not being able to move in my sleep every night.

I've had a few close calls of ripping out, actually the afternoon I had it placed it in I ripped it out. I went to roll over and didn't notice I was already on my side and almost fell out of a bed.

Ok, I used to take care of a kid with Cerebral Palsy and he was fed through a feeding tube for years. I love hearing other peoples stories.

I've only talked to one other kid and she only had it for a short while so it wasn't the same.

Check out the Oley foundation, they can connect you with other TF patients.

http://www.oley.org

Oh alright thanks I'll check it out for sure.

What kind of pump are you on, any issues with it?

Im glad to see you live a normal life and dont have to be on a continuous feed, who pays for your iso-source currently?

I use a kangaroo pump, my families insurance pays for it. I'm still high school so please don't freak out on me. :)

Glad to see your insurance is paying for it, there are quite a few companies that will only cover tube feeding supplies if you are NPO, i work in medical equipment and just set up a gentleman on a pump with 7 cans of iso a night.

Yeah I am too, and oh good seven cans. That just makes me sick thinking about it.

its not like you can taste it... (can you?)

If i burp or just morning breath and I have drank some of the iso before.

Googled it. Not sure why i was mildly disappointed, was expecting it to look like a energy drink.

Yeah it's kinda far from that.

What is the taste/aroma like? Milky, or proteiny? Bitter?

It's kinda of a mix of milky and chalky tasting, I've only drink-ed it orally a few times to go stay at a friends house when I was younger.

Can you swim with it or do you need a special type of cover?

No special cover, I can just up into a pool and I'm good to go.

Did you have any medical issues as a baby?

What do you want to do when you finish school?

On the issue of drinking - as a young adult with medical issues, I would just like to add that nobody else cares if you do or if you don't, so if you never drink at all when you're old enough, it won't matter and you won't risk messing anything up. Also, everyone likes the designated driver.

Some of my medical issues as a baby were severe cough, lung infection, and I had to have my eye lids surgically reopen. I want to be a video journalist, video crew man, or anything where I can work a camera and talk about stuff. I have a vlog but it isn't going that good. I don't really plan on drinking for a few reason but I plan on being DD almost all the time, no one should die because of a bad choice.

Awesome. My cousin is a camera man for a local news station - he's got a degree in journalism and done a lot of volunteer work to get there. :)

I want to go to school for journalism but I don't think I'll be able to afford to go to school after high school, I'll have to find a job and hope to get to school.

When you turn 21, are you going to pour shots/beer down that thing?

Doubtful.

Is alcohol something you can't have?

Also I feel you with the asthma. I've had it since I was born.

I'm not sure how I'll handle it, family has an issue with alcoholism and I don't handle any type of meds well even under docs watch so I'm just going to avoid it for awhile.

Good idea. If you do decide to consume alcohol, take it slow. You'll have a better time with it that way.

Yeah well thanks for the little tip.

What are your wishes if you are in a vegetative state?

To not be, it just depends. If there's a good chance of me coming out of it keep me hooked up, if there isn't a good chance pull the plug. I don't want to be one of those things that need ten different things to just to pump my blood.

I wouldn't mind being kept alive by mechanical means. I want to be a cyborg one day.

Cyborg is different then being hooked up to stay alive, or at least for me.

Robocop?

I have never watch Robocop. Don't hate, just haven't really had time.

Can you feel the tube?

Yes and no, it's just one those "itches" that I gotten use to and don't notice.

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I hope I can get rid of it one day, it's like my biggest dream.

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Yeah if the time ever comes where I don't need it, I'll gladly take a second belly button.

Oh god I'm such an asshole for feeling better about my own condition now...

It's fine, everyone does it with something.

Ever put the tube up your butt and ask the nurse to send you down some Ox Tongue?

No, just no

Can you taste things? What does it taste like! Do you blend normal food, or do you eat powdered stuff? Thanks for the AMA!

I can taste if I burp or have morning breath. No I have special medical stuff. No problem, thanks for taking interest in my AMA.

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Sure, are you?