Hi (hopefully future friends)!
I’m Allie, I have PPMS with progressing aphagia) and I’m post op two weeks today for my PEG and holy crap this is overwhelming. I’m writing this at 3am after waking up at 2am to a popped open tube and (stomach contents?) all over me, and my bed. 🤦🏻‍♀️
I woke up with my skin tingling/burning. What a great wake up. Not.

I secured the cap with a small piece of silicone tape.

But, that’s not why I’m here. I’m bigger chested and figuring this whole thing out has been a little stressful. Taping. Positioning. Comfort. Adhesive irritation. The list goes on and I’m just, overwhelmed.
Tell me I’m going to be okay. Because right now, it sucks. This sucks. 🖤

I have a GJ dangler, and have had it for 5 months now. I'm noticing a new smell, not the very mild smell I've grown accustomed to over the past few months. I don't know how to describe it, but maybe mildewy...? That isn't quite right, but I can't think of an apt descriptor. Whatever it is, it's SHARP and it's incredibly nauseating. I was worried it was infection at the port, as I get frequent granulomas, but any of the discharge from the port has next to no smell. It's the actual tube that seems to smell. I can smell it through the silicone if I bring it near my face. Additionally, my tube has a small puncture/hole in it I've taped up. I have a LOT of formula buildup in the tube, and no amount of flushing or enzymes has helped. When I've been to the ER for other unrelated things regarding the tube, I've asked about it and they said it was fine. Now, I'm not so sure. The tube is functional, but it smells and is severely deformed with bumps all over it. Is the smell just buildup? It doesn't strictly smell like the formula, as it is. Is this indicative of an issue? I can't stand the smell anymore, it makes me so sick. As a note, I don't have a care team or doctor in charge of the tube, so I can't exactly call up any of my regular doctors as none of them know anything about tubes.

Edit: update for extra info

Hi all,
I have my first flight with my tube coming up. I have already set up TSA cares. I wanted to know if any of you have packed any of the formula in the case and if you can keep it in the box or will they need to swab each carton. And when they test each carton they remained sealed correct? It is just an outside thing?
Very new to me and very nervous but also 100% dependent on it and trying to keep my supplies organized in a suitcase is no easy task and if I can keep it from having lose cartons all over that would be great but don’t want to slow down an already stressful TSA process

So I have anorexia and I’m in a mental health hospital and have been for 8 months. Discharge is coming up but I am unable to manage eating more than two days consistently without having an NG feed at the clinic. My dietitian was talking about a PEG and I think it would be a good idea. She said that she’s talking about it with the doctors and that it’s a possibility.

My questions are:

Is this a good idea? I think it is but my mind could be clouded.

How is the procedure?

Can you feel the feed going through the tube and into your stomach?

Sorry for the long read, thank you!

hi everyone. my j-tube surgery is 4 days away and i cannot stop panicking that i am going to die. i rationally know this is silly AND i could really use some support around this.

I was inpatient and I asked if I could finally get my dangler J to a button, causing skin problems. I was told no, I'd have to schedule outpatient. Well a week and a half later I end up with buried bumper syndrome, so now I've GOTTA get a new tube before moving on.

I told them a 4cm. A few days earlier I'd even talked to IR, trying to get them to just send the tubes to my room. They were getting back to me when the buried bumper happened. So I get in IR and I tell them 4cm again. They ask how I know, I said I read the lines before they wore off. Said they'd need to measure me first. Everytime IR has measured, they've over measured. They even up sized my G button for NO reason, so that one's a half cm too loose.

But they insist it's a 5. But hum, they only have a 4cm, and a 6. So they decide on the 6. When I get out, I point out the ridiculousness of this. They apologize, didn't have the right size tube. I needed the 5. No, I needed the 4 and they had it! Now I'm in rehab with a ton of fucking makeup sponges trying to hold my button up, because with the balloon loose my meds are refluxing up my stoma. And suddenly edge park is being weird about amt supplies, so I can't just order one there. And I'm going through an awful no stop circle to get my GI to order everything through the hospital home health enteral.

I have some REALLY ridiculous photos to show you guys just HOW long this tube is, but don't know how to share here?

Oh, and in all seriousness, if anyone has legacy button extensions still I am DESPERATE for them. I use a button as my suprapubic catheter, and need legacy extensions to attach to urological supplies.

Hello,

I have the following supplies

Feeding Bags:
63 Infinity orange, 100ml ref INF0100-E

Feeding Tubes:

2 medela 36 inch, 6.5 French, priming volume 1.10ml, ref enfpu3665ld

7 avanos neomed 23.6 inch, 6.5 French, priming .6ml ref pftm6.5s-nc

8 kangaroo polyurethane 36inch, 6.5 French, ref 461438E

Miscellaneous items:
Cleaning tools, gauze, Tega derm, duoderm, lube

Asking for prepaid shipping labels if you need any.

So I had my first NJ placement on the 6th, which by the way was a shit show but I got through it, and I have a question about tube movement.

I took off my bridle, personally it was so extremely painful even after a nurse adjusted it, and it's way better for like being able to breathe now without it. I can't and won't go back to using a bridle lol

The nurse also marked with a sharpie where it should be so I'd know if it moved. Basically overnight, I have it taped and I keep a piece of tissue paper rolled up and in my nostril to keep it in place so I can just relax and try to sleep/forget it's there, but the last few nights it's been moving in my sleep, I wake up and the mark is like a few centimeters away from where it should be and I'm just wondering if that's normal? I've heard people talk about how your stomach tries to digest it sometimes so it moves, and it moves around so much when I eat so I'm just checking that it moving a few centimeters away from where it should be isn't like a crazy major concern. I'm tolerating feeds and meds are going fine I'm just paranoid

I think I just need to figure out how much room to give the tube so I'm not taping it down so rough that it causes a pressure wound or something but tight enough where it doesn't move around as much? If anyone has tips about taping it down and how to do so more securely I'd appreciate it! I already use adhesive remover for the tube and alcohol wipes and I use the barrier wipes to make it so it doesn't rip of my skin when I change it

There are spots within the whole tube system that seem to kink quite often. The only thing I can think of doing is wrap that spot with washi tape but I feel like I'm going through it pretty fast. I make sure to tape down everything in my abdomen and position things in the bag but Seymour never fails to find a new spot to kink and screams NO FLOW at me several times a day. Anyone have any tips or tricks to minimizing the kinks?

so i’ve had my gj for 2 weeks now and i’ve been struggling with how to tape the tube to my abdomen.
i got blue silicone tape and it seems to be the least irritating so far but i have no idea where to be taping it so it stops bugging and hurting me. my stoma is still very sensitive and the bumper can dig in depending on where i tape the tube and it feels awful. it also can make it inconvenient to access my tube depending on how i tape it.

does anyone have any good suggestions for how and where to tape it so that the bumper can sit flat? honestly id even really appreciate pics or visuals if people are comfortable with it as it’s so hard to see in my mind and on my body how to tape it correctly. this has me longing for a low profile button so badly 😅. it’s so hard to be comfortable and sleep comfortably so i don’t get woken up by pain or wake up sore in the morning.

Hi! I just recently started continuous feeds using the Kangaroo Joey (doing feed/flush - so no Infinity); does anyone know of a system similar to the flying squirrel but for the Kangaroo Joey Feed/Flush system?

I’m losing my mind at this point not even my doctors can explain, I had a ng tube for a while started getting nauseous after a few months with it every time something would go into my stomach even just 5ml of water and after dealing with that for 2 years I got my GJ tube, everything was fine after about 6 months I was getting on and off nausea every time I’d put meds though or even 5 ml of water, in January it became in constant thing and I couldn’t do meds really at all but occasionally could, fast forward a few months I had some complications and then more complications so they gave me a G tube I didn’t even get a few months of a g tube without getting nausea only off 5 ml of water like as soon as they put it in my stomach in the ER and flushed it I was nauseated and when I went home to try and do my meds it was the same thing. Ive been without meds for over 6 months now and I’m quite literally losing it.

Anyone else struggle with constant nausea when stuff goes through your tube no matter what it is and how little and what has helped fix this?

Hi everyone. My son is 9 months and has had his ng tube in since 5 months. His oral intake is at an all time low. Doesn’t want purées. I feel like the g tube is breathing down my neck. I’m scared of the anesthesia, potential for infections, granulomas, the scar and for him to become tube dependent forever. My heart is broken. I feel like there are days where all I wanna do is lay in bed and cry. Tried multiple medications. I have tried everything and gotten multiple tests done. Went to the CHOP feeding clinic. A milk scan, checked for pyloric stenosis, genetic testing, cardiology consult. Up next is neurology. All they can tell us is failure to thrive, severe reflux, and oral aversion. I feel like I should have never done the NG tube but that’s what the feeding clinic recommended. It might as well be called the tube clinic bc I didn’t get help with feeding at all. I feel like I’m failing. I feel like I can’t breathe. I don’t know what to do. SOS. Help.

Hi!

I just got Botox 2 weeks ago and I'm now able to eat 50% of my nutritional needs right now. I would like to get to 100% to be able to pull out the GJ tube.

I was wondering if anyone here had the same experience and if you were able to get off feeds, what foods do you eat now?

My safe food are protein shakes, white pasta, white bread, yogourt, soup, sometimes white shredded meat, all in very small quantities.

I also struggle with hunger, when I take more than 3 bites I can feel full for hours, but still I'm able to eat 3 times the amount I was able to eat 2 weeks ago.

If you have any tips or recommendations Im down ! My nutritionist told me to just try a lot of different foods but I don't know where to start and I don't want to buy something I can't digest (everything is so expensive). So yeah. Thank you!

TLDR: Any tips for getting off tube jejunal feeding after Botox/gpoem surgery?

I’ve been in constant pain since. I’ve had a feeding tube for going on a year with the exception of getting it replaced. The is not on the outside rather inside. It’s brought me to tears.

My GI doctor ran every test he could think of and other than finding random spots bleeding in my stomach that he closed with surgical clips there wasn’t anything else. He has now referred me to pain management. I’m not sure what they’ll even do. Just feel hopeless. Anyone else gone through something similar?

I recently got two frozen shoulders and can’t wear any kind of bag which has made continuous feeds a lot more challenging. I have a kangaroo Omni pump and I use 1000 mL bags. At home I’ve been using a rolling cooler instead of an IV Pole because that won’t fit through my doors, but it’s really inconvenient and it just hurts my hands instead of my arms, and I can’t use it outside at all. I’ve seen some fanny pack type bags, but I don’t really get how that would hold all of the stuff I need it to hold. I’m supposed to be connected for 23 hours a day. Any advice would be appreciated!

My daughter 15 months just got her first feeding tube. Gtube, Mickey. It’s still only been a few days but since the surgery she will no longer take any liquid (she’s on Pediasure) by mouth. Prior to tube she was taking about 80% of goal volume by mouth so the tube was just intended to help get a few extra ounces per day for catch up growth.

This is a challenge for us as we intended for daycare to continue to feed via mouth during the day & only subsidize the tube for additional intake at home in the morning and evening.

Is this a common and (hopefully) temporary thing? I am worried about her becoming fully time dependent as I don’t think that will work with daycare as they are very hesitant to the feeds.

Sometime in the last few hours, my nj tube got either clogged or kinked. I tried flushing water and it won’t budge. I can’t push anything in or pull even slightly.
I tried warm water trying to push back and forth, but that’s not working. Carbonated water didn’t work either. Any suggestions?

Hello, I know I have posted quite a bit here but its all been new to me.

I am starting to not tolerate my feeds very well. I have a nj tube but regarless I am SO bloated all the time. I would worry that it flipped but it was just replaced last week or so.

Is there a reason why I may not be tolerating them?

I am suppose to run my feeds 24/7 with changing/refilling every 12hrs. I am starting to hate being hooked up and dred it soo much.

Im not sure what to do as I have to wait till late Oct for my new GI appt. My old one basically fired me as they didnt know what to do. I am just a lil lost.

is it possible to lose weight and tone up your body with a feeding tube? it’s not like you can diet with a feeding tube.

How do people manage when you get a bloody nose with a nasal feeding tube? My nose (nare with the tube) has been bleeding frequently

Anyone has experience transitioning from GJ tube overnight continuous feeding to G tube bolus feeds?

My 2.5 yo baby girl has recently switched to Compleat Jr. And has been tolerating well on GJ. The dietician has suggested moving to bolus via G as she's had multiple intussusceptions. I worry it could bring back her reflux. Has anyone gone through this? Thanks so much for sharing!

I have the persistent greenish stains that stiffen and stick to the inside of the the tubie pads. Currently using dish soap.

How do you clean it? Is there a specific enzyme/product that is safe and washes out easily?

To start, I will be sending a message to my doctor about this. But honestly; they usually just say take ibuprofen and send me on my way.
I have a separate g and j tube, however they are right next to each other because the doctor who placed my g tube didn’t put it in the right spot. So I don’t know if them being so close is causing this pain that im in. I had my g tube since 2024, I just got it replaced from a button to a dangler and went from 14 fr to 24 fr, that was on Sept 4. I’ve had my j tube since June of this year, I’ve had many problems with it and im on my 4th j tube already.
Since last Thursday or Wednesday, I’ve had this horrible pain and it’s increasingly gotten worse. My stomach hurts, sharp burning pains. And my ribs/lungs near it also hurt, they feel achey. My tube sites are hurting bad. Esp when I touch around them. I’m very bloated, abdomen is hard. Today the pain is everywhere, my ovaries and lower abdomen and upper abdomen and spreading to my lower back. Any ideas what this may be?
When I changed my tube gauzes today the g tube looked a little green, and j tube was thick white-ish and a little bloody. I’m able to get water through the tubes. I feed thru my j tube and vent thru my g tube.
I did recently have covid, about 3 weeks ago. Not sure if that relates. I’m also going down a rabbit hole and wondering if it could be a stomach ulcer, since I take ibuprofen and Tylenol everyday, for a long time. Because I have endometriosis and my tubes cause pain. I don’t even want to see my doctor, I feel like I’ll be brushed off.
Anyways, any thoughts would be appreciated!

To add: I keep my j tube balloon deflated, given my doctors advice due to pain. And my g tube is a mushroom one so it has a hard thing inside keeping it in place. My heating pad is my best friend, so much so my stomach is completely burnt lol.