No more food for me! Life with a GJ-Feeding tube

[Mrsbutterfly0123]

my brother only had one and my sister had two but all there live they going to have surgy but my sister is fine she run and play and talk and my brother is behine i hope you get better your friends

[Mrsbutterfly0123]

do you get out of your feeding tub when you get better they tell my brother that he will get better and he will be better when we dont know but they are doing test on  him so they could see why he dont eat he alawys throwing up still with the feeding tub still the gave him a new mesds so he could get better and he also have surgy all there life

[Mrsbutterfly0123]

hi my name is yamiles.. my lil brother is 1 yrd old and he got an gtube too... and he drink juice by mouth bt no food.. r u allowed to drink juice or anything.. or cn u eat also cuzz like i said my bother cn n tryed to tell him to eat bt he dnt want to yet so me and mom feed him by the gtube. and also its brave of you to put thiz on youtube.. also i hope you cn answer my question or any question bout my lil brother here my e-mail: buttterfly0123@ymail.com

[jdkuti1709]

I feel bad for you hunny, I hope you'll get better soon.

[painlessandstainles1]

I DONT KNOW woops caps sorry but everything about ur face is just perfect ur beatiful and i respect u ALOT for what u live with and admire ur attitude life must go on

[elinalla1]

My dear friend, I am nursing student I watch your videos for past 2 years. I learned so much from you, also your experience helps me to understand what patient going through. I send you my prayers. Wish you the best of luck.

[dionstrezlecki]

do you have a mouth full of silver amalgam fillings dear?

[wolen1]

pretty awesome of you to put all this on youtube. Good for you! (and all the other people facing similar problems)

[christina250810]

hi

was just wondering why you can't eat?

and does haven the feeding tube, like do you feel good or do you feel not soo good!

i have problem eating i dont know what i should do i havent been able to eat soild foods in yrs and now im starting not to feel good at all, i can't see stright, think stright or even sleep half the time

im thinking about trying a feeding tube to see if that will help me out a lil more and help me feel not soo shitty all the time!

[TheSarahboo19]

so... if u dont mind me asking,,, how did this all start. ( like i said not tryin to nose. just courious)

[jkseiden]

You said you miss the flavor of food. What if you put food in your mouth chew it then spit it out. Sounds kinda gross but u get the flavor!

[DeRex9]

Thank you for sharing your experience

[darkangel198130]

you poor girl i am thinking of you hun and plz show where the tube go's in you tummy plz and god bless you

[nystagmis24]

Just wanted to say that I think it's awesome that you are willing to share your story with others. It takes a lot of courage to show yourself when you might be "different" than others. Most people would hide and be ashamed and it's great that you are willing to share your experiences with others and help them feel comfortable. I'm a nurse at UCSF in San Francisco and I work with patients who have all kinds of tubes (yes Gtubes and GJtubes too). Thanks again and hope you remain healthy! Ed

[skobenland]

You are amazing. I've got gastroparesis and have so far avoided one of those tubes. Keep doing well.

[Starrizfy33]

I had an NG tube getting put in and taken out for 2 weeks.

[hardflipbacksmith270]

Here's just a tip that will save you a whooooole lot of pain...when they remove the feeding tube just relax your abdominal muscles and breath deeply...if you tense up it tightens up around the tube...i learned that one the hard way

[NurseCare68]

God Bless you sweetie, you are a brave & strong girl.

[AmazingGrace160]

@meifcorcha Nope! Im not anorexic. My channel explains my health condition.

[Brookiecookie1114]

@AmazingGrace160 OMG I USED TO HAVE THE SAME TUBE!!!! It gets infected easily! Maybe if you wanted you could ask them for the mickey button it does the same exact thing but it's not a long tube it's like a little port where you plug in another tube so when your off it's much easier to move and it's TOTALLY not noticable!!! We should talk sometime!! I have the same bags and wierd box thingy that make the same noises.. Do u have New England Life Care or maybe our pplaces just have the same one??!!

[familee24]

I was wondering if you could chew or swish food/drink around in your mouth just for the taste....maybe not at the table cause naturally you would have to spit it out. or is the risk of swallowing/not swallowing/aspirating to high? what about chewing gum or things like that? sucking on a jolly rancher? lots of random questions but I would think some of the above would be okay? You are my hero btw! next video you make should have more moments with you smiling because you are beautiful girl!

[AmazingGrace160]

@familee24 Imagine you are a smoker, you smoke several times a day but have decided to quite because you just found out it is greatly putting your life in danger b/c of an illness you had just been diagnosed with. Does the smoker quite more easily because he knows his health is in danger or what are his chances of stopping if he just had maybe one or two a day? I do chew gum a lot and now that its been closer to two years being around family meals are easier. :)

[AmazingGrace160]

Thanks for the compliment :) And sorry this is going to have to be posted in two comments. For the first 2 months of not eating I did chew on different foods and spit it out but I was just so frustrated by it. It was hard to explain why to my family and the easiest way I could explain it to them was this:

[soffe6745]

coooool

[freshpinescents]

@meifcorcha She already said that she couldn't handle bolus feeding.

[LuckyLewis15]

If you don't mind me asking what do you do while in school?

[AmazingGrace160]

@LuckyLewis15 I am still connected to my feeding tube, still do my medications through it there. Life must go on.

[DKayeS70]

Good for you! I can't even believe they would have tried local. It took my son 1 week to recover in the hospital from his gtube alone. God bless you. You are amazing!

[MrHunniebunnie]

You're really brave. Will you get any better or will you have the feeding tube for life?

[tinmanlover1994]

sorry that u can't eat no more i hope that u can eat agin soon

[missm19651]

Strong, intelligent, beautiful young lady you are. Glad to see you smile and use the opportunity to enlighten others about your experience. Thank you.

[kiwichrisnz]

Hi there, the discoloration is on the inside of her tube. Finally we have got an answer, the tube was swabbed and tested, would you believe it contained a yeast bug, which if not adressed can be fatal if not attended to.My sister in law is feeling so much better now. Thank you for answering. Please can we keep in contact. many thanks.Christine.

[AmazingGrace160]

@kiwichrisnz Of course we can keep in contact. And, Im SO sorry it took such a long time to reply to your comment. I have so many videos on her every two months I go through all the comments to see if there is something important I forgot to reply to. I came right back to your comment cause the other day my tube was also turning brown and I remembered you. Its not anymore but I think I may know what it was. You can mssg me if you want :)

[joyceyrose]

God Bless you and I pr ay that this is temporary and you get the health to eat once again. My daughter and I share dys/fms and she is the one with the horrible stomach/nausea and pain.I have pain and some other issues.most of mine is leg swelling, fms pain. she has been diagnosed with delayed stomach emptying.

[yovito14]

I have Pancreas Divisum a congenital defect. Now I have a GJtube place in my stomach I can't eat no more. Some days I drink some liquids and eats small amount of food but later I have to vomit and also my pancreas pain gets worse. I use the same machine and I have the same GJtube. Take care of your self and God bless you.

junnie05

[1936sandy]

Sooo sorry that you have to go through with all this!!!! My dad use to has to have his doctors do all that to him and it was attached to his stomach,,, he had parkinsons and it was bad and he died on march 14th of this year, but I hope it gets better for u!!! My dad couldn't drink anything and i was wondering if u could??

[evewalleghost]

god bless you i hope you get better soon

[DaNiggha]

this is really sad to watch

[kiwichrisnz]

Have you ever had any trouble with your g-j tube, the external part of the tube turning a very dark brown at all? My sister inlaw has a lot of trouble with her one doing that. We are fairly sure when it does that ,it's what causes a lot of nausea. She, like you, has gastro peresis(spelt wrong).Dr hasn't really been of any help with explaining why this happens. Hope you dont mind me asking.

[AmazingGrace160]

@kiwichrisnz is it the outside of her tube or is the discoloration on the insede? Is any liquide meds going through it?

[kiwichrisnz]

Hi there you are an amazing young lady.

[MandyBooVLDarkMoon]

Im sorrie ur going through that dear god bless you hope ur doing better stay strong ur video was good i dont have a feeding tube letting ya know...

[AmazingGrace160]

@yorkielover35 I would DO ANYTHING right now to eat!!! Its not that I dont choose not to eat its all the medical crap I have to deal with.

[dancelover296]

Heyy, small question, When you are taking your medications through the serange can you feel it going in? it's a weird question i know haha but im curious. :P

[AmazingGrace160]

@dancelover296 Yes I can feel it going in lol. I can also taste it.

[horseloverxxo]

@AmazingGrace160 how do you taste it if its going straight into your small intestine?

[macbookpro57]

man, that's terrible, I hope you get better. god bless you

[IGGY0056]

when u have a feeding tube can u still eat food? and can the tube be removed

[ashfox123]

*hugs ya tight* I have POTS (Postural Orthostatic Tachycardia Syndrome) which is a form of Dysautonomia. I feel so bad for you. If it's any consolation, you look beautiful. You seem very strong and I can imagine, you would have to be. *hugs again* if you ever need anyone to talk with, feel free to send me a msg.

[TheBne123456]

My sister used to have to sit their and watch my family and I eat also .My mom saw how much it hurt my sister so we came up with the concept of tasting foods without her actually ingesting the food. My sister used to discretely chew up food and spit it out into a cup . That way she could still enjoy all her favorite foods without them making her sicker. It brought her so much joy being able to still taste foods without making her sick .My sisters method may be something worth trying =:)

[TheBne123456]

I 've decided that it is my wish not to get a feeding tube . I don't want to prolong my pain and suffering any more than I have too. My sister went through a lot of turmoil with her j-tube. She had one infection after the next . Her body couldn't support a j-tube without her being on IV Antibiotics .She had to have a pic line placed to receive long term IV antibiotics . She died from several life threatening blood infections from an infected pic line. I know how difficult this must be for you

[TheBne123456]

Your story sounds so familiar to my sisters. My sister used to have to be medicated every two hours. My mom had to crush her meds and administer them through her j-tube. She had to be tube fed 24 hours a day .She was only disconnected from her tune feeds during her bed baths.Your story brings back soo many memories I have of her. Have you ever been tested for mitochondrial disease ? I also have mitochondrial disease and am in the end stages my intestines and stomach have begun to shut down.

[TheBne123456]

You are an amazing young women! .You remind me of my sister who passed away from Mitochondrial Disease On July 25th 2010 . My sister had a j-tube for complete hydration and nutrition .What my sister used to so she could still enjoy the taste of foods without actually eating foods was she used to taste food by chewing it up and spitting it back out into a cup. I know it may sound gross but, it's not! .People with feeding tubes have every right to enjoy food too. I hope that helps ease your pain

[LainOutOnTheFloor]

I am blown away by you, girlfriend! I have had an NG-Tube and two J-Tubes--the last J- for for two years, need a third one now; in fact, so terribly run down from lack of needed nutrition that I have an appointment with my gastroenterologist tomorrow in fear of this inevitability! I can hear that pump beeping as if never gone without it; give it to me right now and I can set it up from memory!

[Nvr2leight]

Tears for food, I know your pain, crushing pills, a whirring beeping pump 24/7, loneliness, the smell of food sending your senses reeling, crying in the nite, no hunger, spit that won't go down, a sore belly, yuk on ur clothes, failing tubes...33 G-J Tubes later in the last nine years. My miracle is this Monday when my feeding tubes will be removed forever...ask your doctor for an intestinal malrotation (internal birth defect) evaluation and a Ladds Procedure, maybe you will have a Miracle too.

[victorious1210]

Your courage is amazing...I will stand in agreement with you in prayer, that your swallowing returns, and your stomach becomes full functioning again. God Bless you...

[loveallzebra1]

Thank u so much for the pump suggestion. I love the infinity so much.

[almzzz2]

iam so sorry for you

[cutseypoo777]

Aww, bless your heart! That must have been devistating when you found that you could no longer take pleasure in something most of us take for granted! I pray that a cure will be discovered for your disorder, and you will be able to eat naturally again! I admire you for your bravery and strength! God bless you!

[SlumberCloud]

Sorry, but how did you end up this way? I kow you said your intestines shut down, then your stomach..but how?

[AmazingGrace160]

@SlumberCloud It is caused by Pure Autonomic Failure

[SlumberCloud]

@AmazingGrace160 Oh, I see. Thank-you. Your story is heartbreaking. It must be very hard on you and your family.

[56clarkg]

Somebody113. Believe me this is not an wxperience you want to do. I doubt you coyld find a surgeon who would perform it anyway. Just follow a good diet in ,moderation and you wil do alright. !3 years with a g-tube.

[123bluegrassgirl]

I too was also strongly sedated to have my feeding tube placed initially. I don't understand why doctors don't realize that it hurts pretty bad to have a feeding tube placed or even changed. I had mine put in in Feburary of 2009, three days after 2 other major surgeries on small intestine and rectum/anus. I spent 10 days in the hospital before I had to recover 2 1/2 months in a nursing facility.

[123bluegrassgirl]

Hi!

You did a good job describing your GJ feeding tube and how to put medicine through the jejunal side of the tube. I have gastroparesis and have a GJ feeding tube. Even though I can eat some solid foods that are ground up, half of my nutrition comes from enteral formula. I use a combination of Osmolite 1.2 and Jevity 1.2 formula and once a week, I have nothing but formula and water all day long (no food). This way, my stomach is allowed to rest to avoid severe nausea and vomitting.

[DustBunnie92]

I sort of know a little how you feel.. for a year From 3pm till the next morning I was on tube feeds and did bowlus feeds at break in school. I know you cant clog your intestines but is there not a more concentrated feed you could get so its less with more calories? I had one Called Nepro, which was 500ml but 1000 calories. then I still have perative at night which is 1000 ml with 1300 calories. I finally learnt to eat again but still have the overnight perative feeds. Hope youre doing well xx

[choud2403]

Hi There,

Thanks for posting this real life video. Hope you get better soon. Nice person like you deserve a nice and enjoyable life. I came to watch this as my mom just got into this and I wanted to see how that works.

Thanks again and God bless you.

[GallopingCloud]

wow i really couldn't imagine having any surgery under local anesthetic...i've had 2 surgeries under general and i would pick general over local any day! hope ur doing better :)

[whosyodd]

many many comments. lol. So im just going to agree with Blake and say that your beautiful and your demeanor make it that much more.

[56clarkg]

The answer is yes!. The following is a quote from a member of my gtube group:

My son has two MicKey buttons. One in his stomach and one in his jejuneum (intestines). He does have more problems on and off with leakage from his J-button. He has had a J-button for almost 10 yrs.

HTH,

Loriann

mom to Kyle, Jeremy and Lucas

[56clarkg]

Wow! You did a great job! I am an old guy and been on enterral feeding for 12 years so far. I originally had a tube like yours then got a Bard Button. Have had that for 10 years (2 buttons over that time). Today I went to the VA for a replacement and they did not have any buttons so it is back with the tube hanging out -- what a bummer. I am going to persist in getting the button back as it is sooo much easier to manage with clothes and going to the pool or beach etc. Best of luck, Clark in NC

[AmazingGrace160]

@56clarkg HI There! Thanks for the response :) I have a question for you if you dont mind. I used to have a GJ-Tube now I just have a J-tube because of problems with my stomach shutting down. Is it possible to have a button for just a J-Tube since it only goes into the intestines? Thankes,

Kristina

[somebody113]

Hey Grace,

Please take this constructively, I think your situation is AWESOME. I'm personally trying to adopt a healthier diet, (lot of raw vegetables, wheatgrass, just a lot of bland items really) and I'm trying to fully eliminate meat out of my diet. I think having a feeding tube would make my life so much easier, is this a procedure that anyone can get? 

[AmazingGrace160]

@somebody113 Hi, this is not a procedure anybody can get. To get one you would have to have some serious medical problems. I don't think my situation is 'awesome' it has made life very very hard. I miss food. I don't think some people understand how often they take just having an ice cream or eating dinner w/ family for granted.

[j1scott]

have you heard of kangaroo joey feeding pump, my son has this one and he is able to take it to school with him , it has a small back pack that is very private and no one even notice he is being fed, and his feeding bag is half the size the one you have, my son is 8 years old and has been tube feed since he was 6 mos and I think this is the best one we have had when it comes to your privacy .

[Citroneneis]

oh man :( u gotta do all this whole procedure like daily and for ur whole life??:(( this all is so supersad but tho u seem SOOO strong and beautiful ...

dont let this get u down, youre great!

take care

hugs from germany

[cryoist]

I can eat stuff.No problem with that.So can I use feeding tubes?

[stephsnfrd]

Do you still have the long GJ tube, or have you tried the GJ button?

[kidcapri009]

If I had to chance to give my mom Vegetable Blends through her tube I would have!! Its critical You don't drink that crap formula they give you for the Long Term. You need Fresh Vitamins and Vegetables to live a healthy life. My mom died in march after her struggle with cancer and she was on the tube for only a few weeks. I would have given her healthy things earlier if the Doctors would not have stood in the way. Use a vitamix to blend the veggies so it won't clog. Be healthy and god bless!!

[AmazingGrace162]

Hi everybody! This is kristina from AmazingGrace160 my channel has now been moved to AmazingGrace162 due to some complications. feel free to join my new group is AmazingGrace162

[CuteStudMuffin20]

I can kinda of relate to you, How... I have a two boys with Cystic Fibrosis. Zackery 3 yrs old, and Christian 2 1/2 yrs old. Both have feeding tubes.  Z-man is on his feeding pump only at night. C-man has a pump just like yours. He is also on 24/7

[2136cass]

Wow, I watched your video before going to my GI appt at Mayo. Ironically, the GI dr took one look at me and admitted me to the hospital to get a nasojejunal feeding tube. I would have been scared but after seeing your video, I felt as though I was not alone. Once my stomach and small intestines become less inflamed, I'm going to have the feeding tube inserted directly into my jejunum. I am so sorry about all your health complications; thank you for sharing your story. God bless.

[AmazingGrace160]

@2136cass Hi, sorry it took so long to reply. At first I had the one in my nose too. How are you doing now? Im praying for you.

[2136cass]

@AmazingGrace160 Thanks for the prayers. I'm doing ok. I got the jejnunal tube last week. I'm still very sore but I have managed to gain a half pound! Hooray! I have to gain 20-30 pounds to get back to a healthier weight...and then the docs will attempt to treat my POTS. Thanks for posting your videos. You're amazing! All the best!

[silentheaven]

I have no words to describe my feelings right now. You're an example for all of us. Stay strong.

Hugs from Italy :)

[BlakeSkousen]

I got a GJ tube and barely sleep too. I had to get a feeding tube first then 6 weeks later get the GJ tube though. I got it because my stomach doesn't empty right, very painful and stuff and I throw up everything. Doctors have like no idea whats wrong though or how to fix it so this was a last option thing. So hopefully I can do my senior year next year. I never really looked at any of it as a bad thing though. I actually see it as a blessing in ways.. Oh and your very beautiful btw

[AmazingGrace160]

Hi@BlakeSkousen, Thanks for the complament! That was very sweet. Im sorry you have to go through this too. Have your docs checked into GERD or delayed gastric emptyin? P.S. I'm sorry it took so long to reply.

[xthroatstabx]

All I could think about was what formula you used, as my older sister useses Osmolite and Jevity. "When does she get to the formula part!" I screamed to myself. Cause that's what kind of "formula" nerd I am.  She has Cerebal palsy and been using the GJ tube for a long time. 35 and still trucking. Love carries a long way.

[AmazingGrace160]

Hi@xthroatstabx, I take crucial because I had plasmapheresis which is like dialysis. It wiped out my immune system. I have problems with keeping my white blood cells up. Even a cold could cause another two month hospital stay and this last time I was on life support. So as far as crucial goes I think its my best option.

[xthroatstabx]

I just want you to know that you have years upon years of greatness to come. Thanks so much for posting a video like this.

[AmazingGrace160]

Hahaha I felt like I was on a coocking show. lol

[ChanShelly]

Oh my goodness...I just saw your other video about being in the hospital for 2 months and on life support...you must have been going through some really terrible stuff!! :( What happened that caused your stomach to shut down; I know the autonomic nervous system controls digestion but I haven't heard about this occuring in POTS patients before. I am looking forward to your update video, and I'll be praying for you.

[poetrygal1]

Hi--I am sorry you can't eat for now!!! Thank you so much for posting this video,seeing how you cope make it less scary for those with Dysautonomia who might have to get this procedure in the future. I am so glad you advocated for yourself and got the general anesthesia.Thanks again...I will pray you get better soon! God bless you! --Cindy

[jd450lh]

Hi Shannon,

That is quite a process you have to go through every day, but at least you are kept alive, thank the Lord! I am like you, when a doctor wants to do a procedure on me and I don't feel right about it, I just say NO! and if there is alternative that I feel comfortable with, I will go with that.

My prayers and thoughts are with you!

God Bless,

Jeff