r/feedingtube

21F, with Ehlers-Danlos syndrome. Spent 2 weeks in the hospital because i had critically low weight due to severe gastroparesis and intestinal dysmotility.

Had a very thick NJ tube inserted during a gastroscopy a bit more than a week ago (the tube also had a drain located in the stomach.). Long story short,feeding tube didn't work as intended,my pump would beep all the time indicating occlusion, the only way to stop it would to sit perfectly still,but i couldn't sit like that entire day,i have severe kyphoscoliosis and joint issues,and sitting like that even for 20 minutes is straight up torture. They also couldn't flush it properly,there was something "blocking" it. I talked to doctors about it a billion times, they told me they will try a different formula, but it ended up not happening. So they decided to eventually take out the tube and... it was the single most painful experience i've ever had in my life. The tube got stuck in my nose,and the pain was indescribable, it felt like my head will explode, my right eye hurt like it was going to pop out. I nearly fainted a couple of times when they tried tugging on it,i screamed a lot . They got mad at me,and called more doctors. They said it wasn't as painful as i make it out to be,and trued tugging again. IT. HURT.

Eventually they ended up calling an endoscopist,and he tugged so hard,pulling it out, and said that i am anorexic for whatever reason,and left,visibly annoyed. There was a lot of blood.

But what hurt even more than the tube removal was the way they treated me. Like i was insane,or was exaggerating. It hurts. It hurts so fucking much,when my entire life people just think i am insane. When i have real and diagnosed medical issues.

Did anyone else experienced such pain during tube removal? I couldn't find similar cases online.

Also,for some context,this happened in Germany.

So for context I’m right now on an NG tube and I’m on continuous feeds (10 hours a day) but it messes with my routine so like if I’m going out lol for example swimming I have to stop it but it then adds on another hour or minutes or whatever, does anyone here do bolus feeds I want to ask my dietitian about moving onto boluses solely because when I go to theme parks I have to pause it for hours so there’s no chance of me being sick so my stomach is empty when I’m on rides and I think boluses would be better so if I got hungry j can give myself a feed if that makes sense I don’t know how to go about it I also sleep in sometimes as well which makes me on my feed until really late like today I woke up at 12pm and put my feed on at 1pm which means it won’t be off until 11pm or 12am tonight and I’m a person who needs to shower every night, the pump is okay but I just think boluses would be better (I did get offered this at the hospital when I was choosing a pump or boluses but i didn’t know much about boluses so I chose a pump) but yeah advice would be great, thanks!

I’m in the hospital and the doctor keeps suggesting it but i have a fear of gagging and it causing me to gag while living with it .But i want to get healthy and leave this place im so bored .Tell me does make you gag 24/7 and if so what could stop it .

So my doctor really doesn't want me submerging the stoma site of my feeding tube. Normally, no issue (but I do miss baths). But it would be nice to be able to go swimming. I know things like tegaderm exist, but I don't know if they have any that would fit over the stoma. If anything, just maybe enough so that I can at least lay on a float and not worry about falling in.

I have a MIC-KEY low profile GJ tube.

I need some help from peoples experience. I have been a GJ tube user since 2011. I have used several formulas a long the way jevity, osmolite, etc you get there picture. About 6 years ago switched to vital 1.2 and have had no problems till now. On April 23 I was admitted for breathing and feeding tube problem could not get feed above 20ml which is 500 kcal approximately. Went on ppn for about 7 days and was able to start tube feeds we got up to 35 when I was discharged got myself up to 55 after my discharge on May 6th. Well it got worse again Nausea, vomiting, severe bloating, pain diarhea, cramping. I went to my GI DR. On May 13th Her said it sounds like intolerance and to immediately goto the Emergency Room because you can't sustain on 20ml 500kcal

He said it might be feeding tube intolerance.

Since admission they have tried Kate Farms peptide based formula. Same results. Then they tried Vivonex Elemental Formula had same results. Pain and discomfort unbearable. They did CT Scan, a contrast study everything was clearvno blockages. Now the hospital wants re do everything with now using decompression. I am getting so frustrated because it is painful just to do tube feeds for 30 minutes. It is like they are doing everything to torture me. Then if that don't work they are going to repeat other formula using the decompression which I am teaching them how to connect everything because I have been decompressing for almost 15 years with all my tube feeds. Then if that don't work TPN is this ridiculous or am I being cynical.

I’m going to put pictures in the comments (if that’s not allowed please let me know! They’re not graphic).

I’ve had my J tube for a year and I’ve noticed that from constantly being taped to the left it’s now slowly pulling across my abdomen.

I had this with my GJ (now a G). Where the constant gentle pressure ended up tearing it across my abdomen to the left. Which resulted in a 1 inch scar.

It was changed to a balloon tube with external bumper which allowed me to tape it differently and now I no longer have a problem with that one.

But my J tube has no balloon, no bumper, the stitches holding it in place tore out. So all that’s holding it in is the tape.

It looks like I should be able to position the tube in a different direction, but it can only face in that one direction. It’s hard to explain unless you try and move it around yourself. But it has to lie to the left.

It’s hard to exactly explain the problem so I hope people can understand from their own experience.

But any potion of the tube that’s excess that normally would give the line more slack, just slides back into me. So the amount of tension is the same. The tube is actually significantly shorter than it’s supposed to be because so much has slid in. A doctor tried to pull some back out (for a brief period only 3-4 inches were exposed), but was afraid to do too much.

If I could put something underneath to hold some of it out of me, that might work. But I can’t imagine that would be comfortable.

Does anyone have suggestions on how I can give it more slack? So it’s not continuing to drag across my abdomen. My doctor also noticed (without me mentioning it) and was concerned, but didn’t have ideas for how I could position it differently.

Also don’t judge me for how disgusting it is lol. It was only meant to be a temporary catheter for 4 weeks and now it’s been in for over a year. No one is willing to change it or remove it because I had severe complications getting it placed. I’m getting it removed surgically. But the tube itself is just really stained. It was being used to drain 24/7 for a lengthy period while I was in the hospital.

Hii! I’m getting a G/J tube conversion soon and I am stuck in between a dangler or low profile. So if you have a low profile please let me know your experience with it. The Pros and Cons, brownie points if you are also a wheelchair user (as I’m concerned about pressure and it indenting my skin). Thanks!!

Hello! My son has a gtube that he will be getting removed. We have an excess amount of supply: feeding bags, extension, etc. Does anyone know of places in Indiana that take medical supplies donation? I would hate to throw it away when someone could use it.

Ive had an nj tube for about a month. It’s where I get all my nutrients from. Meanwhile any food I try to consume orally has continued to make me sick. In fact it’s gotten even worse over the past month instead of better. I’m constantly asking the doctors for a more long term solution because we have no clue how my illness will progress. Meanwhile the doctors keep refusing because “there’s a small chance it’ll go away on its own.“ And yes, potentially this could go away in a month or two but seeing as I’ve been struggling with this for years, it’s continuing to worsen, and many patients with this illness have it forever, I think it’s perfectly reasonable to begin looking at long term solutions. It honestly feels like I’m just waiting for the day they finally realize we need a more sustainable source of nutrition.

My dad has cancer and he’ll be going through treatment which will cause him to need a feeding tube. I took him to get his feeding tube put in Wednesday, so 4 days ago now. We were told it would be mild pain and that activity was encouraged. They showed us how to flush it and do the feeds and gave him 10mg of OxyContin every 6 hours for 7 days. They told us cleaning it with unscented soap in the shower would be ok. We were told severe abdominal pain, redness/swelling around the tube weren’t normal.
I see everyone saying PEG, J, GJ, etc. I have no idea which one he has but it’s in his stomach and it’s a long dangling tube. He keeps it taped to the side.
He’s had severe abdominal pain with the tube, and the area around it is red and swollen. He can hardly get up and has mostly stayed in one spot since his procedure. He’s not sleeping as he can’t get comfortable. I’ve never seen him like this.
Since we were told severe abdominal pain/redness and swelling around the tube weren’t normal I took him to the ER. They did bloodwork and a scan of his stomach and said that it was normal postoperative pain and his stomach was just healing from the procedure. His nurse still says “that’s funny, no one’s ever told me they’ve had pain like his.”
His OxyContin isn’t really touching the pain and certainly doesn’t last for the full 6 hours. I got off the phone with his doctor a few minutes ago and she told me there was “nothing stronger they could give him” which was a lie. I asked if they could at least refill the OxyContin because in a couple days it’ll be gone and he’s still in so much pain, to which she replied no.
I’m at a loss with him in so much pain, what can we do? The doctors haven’t been much help honestly, they say it shouldn’t be this bad. They gave him morphine in the ER as well which he said only made him feel bad, it didn’t help with pain either.
I’ve had OxyContin when I got all four wisdom teeth out and I was given morphine once for an injury, I can agree with him that neither of them touched my pain. I guess doctors don’t really know what helps with pain because most of them haven’t actually been in pain and taken these drugs.
Other than the severe pain he’s in, how can we clean it if he can’t get up to shower? And what do we put on it? I thought maybe they’d show us post op or at least in the ER but they didn’t. Any advice is appreciated!

I want to replace my dangling PEG tube with one of the compact options, the MiniONE or the MIC-KEY. I see my gastroenterologist about this in a few days.

Which one should be my first choice, the MiniONE or the MIC-KEY? Pros and cons, please? Reasons to avoid one or the other? Of course I'm looking for low maintenance and ease of use.

Thanks!   -Doug

 

Hi! 24F here who just got her PEG tube a couple weeks ago. My normal daily attire is crop tops, and since my dangler is 15inches from the stoma to the end, covering is is sort of uncomfortable anyway (the tube is really bulky when I coil it, but coiling it up is how it’s most comfy).

I’m not worried at all about anyone seeing the tube, and generally could care less if I get any questions about it or weird stares, but is it gross and unsightly if my crop tops fall above the stoma, so you can see the external bumper and tubie pad?

I don’t care too much about conformity, but maybe it’s one thing for the tube to show and another for the base of the tube/stoma to show? I imagine with a tubie pad it’s okay, but I’m wondering what others think or if anyone else with a G or J tube does this!

Thanks :)

Edit: Thank you all so much for the overwhelmingly positive responses! This is my first time posting in this sub and you all seem like lovely people. Everyone is right - it’s not gross and my comfort takes priority! I appreciate everyone taking the time to respond :)

Hello everyone! A few weeks ago I was put on the liquid and very soft food diet by my nutritionist. I was told if that didn’t work that I would most likely need an NJ tube for a while. Since then it has gotten worse to the point where I am barely getting in 300 cals of liquids and no solid food. Solid food doesn’t stay down at all and it takes all of my strength to keep down liquids and pills. But I was told by my PCP that I might not qualify because my weight is stable right now but I have lost 50 pounds since last October. I am really suffering and I just want to feel sort of normal again and was wondering if anyone had any thoughts! I also have POTS, EDS and possible MCAS. All help is appreciated! Thank you!

I had my bumper loosened 3 days ago because it was extremely tight but just yesterday and tonight it’s been bleeding more. It took a few days since it’s been loosened but wondering if more bleeding is something to be concerned about. I woke up middle of the night to need to change the dressing and then had to in the morning as well.
The blood also seems to have a bad smell. My GI office never answers the phone so maybe I’ll get it checked out by my PCP or something

I have an NJ tube due to my SMA syndrome. I started at 25 ML an hour and it always made me sick, but I kept increasing the feed rate 10% each day until I hit 31. At that point I was so sick and in so much pain I had to go to the ER. They said nothing was wrong and sent me on my way.

Ever since then I can't even handle 15 ML an hour during the day or 5 ML an hour at night without waking up feeling incredibly bloated in pain and my throat burning due to the reflux.

I was able to eat by mouth far better than the tube can feed me. But whenever I run the feeds, I can't really eat much of anything. I'm losing a pound almost every other day. I don't think I have ever been this sick before, the acid reflux is severe even after I take omeprazole.

I'm trying to figure out what to do, my GI is saying to just decrease the feed rate, but I can barely even handle 5 ML an hour at night. Thats like 7 calories an hour just to feel like crap and not being to eat.

I don't know what's wrong, could there be too much air getting in the line, maybe I need a new formula? Has anyone else had this problem? I just need some help.

Getting a GJ placed laparoscopically on Tuesday, I’m nervous and would love any and all advice on pain management, recovery, and tube care!

I’ve had an NJ for 9 months so excited to get rid of it, but nervous about surgery. My only surgical experience is laparoscopic gallbladder removal, in case anyone can compare them.

Tube will be 14fr AMT G-Jet, I’m also nervous about starting with a button initially since I know that is uncommon and my surgeon basically guesstimated what my tract length will be.

Thank you all in advance!

Not really a vent, I can laugh at this stuff now, so more of a what the hell moment. It was new extension day, my favorite, because the floppy alarm inducing extension is swapped for a new stiffer one that will hold out for a few days before being floppy, too.

I get all hooked up, I’m in bed, and I feel damp, but I check and all my ports are properly closed etc. Weird, but I assume the Velcro I use to keep the tube secure is still wet from a shower.

I’m about to fall asleep and I realize I am REALLY wet. Now I’m extra annoyed, and loopy from sleeping meds. I realize it’s formula, and panic that my tube itself is failing. Thankfully, I find the issue…my extension is leaking. It’s screwed in properly, but while I’m checking, the tubing of the extension just falls right off. Cue me pinching it off, shouting “no” over and over, and trying to sort out how to prevent leaking all over as I get into my wheelchair and rush to the bathroom.

I’ve had a variety of leaks over the last year and a half, but it’s usually the feeding bag, or the port on the tube itself. (My g port can leak small drops if it’s under pressure.)

Enjoy this weird one (at least for me.) If you’re reading this still, stay dry today haha!

I've had a PEG J tube since March 5th (had a NG tube for six months before my surgery) and I've only just discovered the concept of the whole "Tubie Life" Community?

I'm trying to build up a bag of everyday essentials to start carrying in my purse because I'm so sick of just stuffing split gauze and wound cleaner and syringes in there every day?

What do y'all carry in your purses to hold your medical supplies? What all do you consider must-haves for everyday trips?

Can someone also explain how the cute covers and clips and things I'm seeing on amazon work and whether or not there's a better place to get these kinds of things?

Thanks so much and I'm so happy to have found community in this new world!

I’m so tired of needing a feeding tube, there are so many days sometimes even a week where I’m unable to stay steady using my feeding pump despite NEEDING to be reliable on it, there are so many days where I physically cannot do feeds due to extreme pain and discomfort, especially on my menstrual cycle I feel unable to due them, I’m getting an iud placed to help with the cycles so I can actually use my tube on my period, I wanted to ask if it’s hard for anyone else to do their feeds on their cycle, I cannot physically due to the extreme discomfort and pain i experience and the constant vomiting on my cycle and being paralyzed from the pain and bloating, I need to know or hope that I’m not the only one suffering on their cycle with a tube.

I’m in my fourth week now with an nj tube. It’s put me in the hospital every week since placement, I’ve had to have tubes changed cause of kinking in the tube, and the clogs are constant. I can’t just keep going to the hospital every week and needing to fix clogs multiple times daily. I have to go in to have them unclog the tube again tomorrow because we couldn’t get it unclogged ourselves. They’ll try changing formula in the hopes that’ll work but said they don’t know if it actually will. If it doesn’t, what should I expect? Would that mean my body just isn’t compatible with it? Would they suggest a different feeding method? Honestly I just want to know what to expect.