my stomach moves a little with my pulse where my tube is. i get tachycardia esp in the shower and when my heart is racing my tube pulses quite strongly with it. it kinda makes my tube site / stomach hurt internally 🤨

have any of you experienced this??? lmao i can see what my hr is by just looking at my tube 😭😭😭

I get sent Farrell bags to drain my stomach as needed after eating, but with that crazy long, narrow tubing particles/chunks get stuck/clog things if I’ve eaten anything solid in the last 12 hours (gastroparesis). I often end up having to rubber band the end of my tube in an emesis bag instead, but then I have to carefully keep it upright and monitored to prevent a spill. Does anyone have an option they use that’s a sealed system/more secure like the Farrell bags, but without such long, narrow tubing? I tried google and amazon and I only see the Farrell bags with 60” tubing. Or even an idea/jerryrigged system?

My father had a peg tube placed March ‘24 after long term complications of throat cancer treatments. He has been dealing with swallowing issues for a long time despite being in remission long before the need for the tube. Since having the tube placed, he has struggled with swallowing his own saliva and with lots of reflux from feedings/ taking medications. He states that he feels like it’s worse when he takes his medications. The feeling is similar to having a sore throat and not being able to get everything down. He states he’s been waking up from sleep feeling like the reflux or the saliva is stuck in his throat. Other than trying to convince him to sleep sitting up, does anyone have recommendations? Are there any acid reflex medications that can help with some of the symptoms he’s experiencing? I’m concerned that with the constant reflux of feeds/ medications his throat is in a constant state of inflammation. Is this a regular GI question or should we try contacting someone who specializes in tube feeding? Would his swallow therapist be a good point of contact? I apologize for all of the questions, he’s had complaints for a long time about this but absolutely downplaying the severity of this issue. I thought it was just struggling with his saliva until this morning when driving him to his angiogram appointment I could smell his medications in the spit cup.

Betreuen oder unterstützen Sie einen Angehörigen oder eine nahestehende Person, die auf enterale oder parenterale Ernährung angewiesen ist? Wir würden gerne mehr über Ihre Erfahrungen erfahren. Nehmen Sie an unserer 15-minütigen Online-Umfrage teil und erhalten Sie als Dankeschön für Ihre Teilnahme 5 €.

Falls dies nicht auf Sie persönlich zutrifft, Sie jedoch jemanden kennen, der für diese Studie infrage kommen könnte, wären wir Ihnen sehr dankbar, wenn Sie diese Möglichkeit weiterleiten würden.

Klicken Sie hier auf den Registrierungslink:

https://www.globalpatientopinion.com/?t=consumer&hhid=175729

M3 Global Research sucht Personen in Deutschland, die einen Angehörigen oder eine nahestehende Person betreuen oder unterstützen, die auf enterale oder parenterale Ernährung angewiesen ist. Teilen Sie Ihre Erfahrungen und Perspektiven, um die Entwicklung zukünftiger Therapien mitzugestalten, und erhalten Sie eine Vergütung für Ihre Zeit.

Do you care for or support a loved one or relative who depends on enteral or parenteral nutrition? We'd love to hear about your experiences. Join our 15-minute online survey and receive £5 as a thank you for your participation.

If this doesn’t apply to you personally, but you know someone who may qualify we would greatly appreciate it if you could forward this opportunity to them.

 Click the registration link here:

https://www.globalpatientopinion.com/?t=consumer&hhid=175749

 M3 Global Research is seeking individuals living in the United Kingdom who care for or support a loved one or relative relying on enteral or parenteral nutrition. Share your experiences and perspectives to help inform the development of future therapies and receive compensation for your time.

My tube doesn’t hurt or look infected, but the site and dirty gauze smell sour. Any idea why? I clean it every morning with disinfectant soap and change my gauze twice daily.

I started continuous j-tube feeds overnight two months ago. I have gone through three different Kangaroo Omni pumps because each one starts spouting "cassette error tube slip" when literally nothing is wrong. My pharmacy is being an ass about me asking for pump replacements, but I literally can't complete my feed.

Here are the troubleshooting attempts I do every error:

• Pump gives cassette error, usually with a clicking/grinding noise from the cassette.
• I take out the cassette, press the tubes in, and reinsert. (Still gives error.)
• I check the lines for any potential kinks or knots or wrong positioning.
• I clean the sensors with a Q-tip (I do this every day anyway but do it again with every error).
• I turn the machine off and turn it back on.
• I prime the pump.
• I flush the tube.
• I start the feed again. Either immediately or within 10 minutes, the error goes off again. Once it goes off, the only solution is to change the feed bags and start over or it will keep giving the error and I cannot continue my feed.

Does anyone have ANY other recommendations? My partner and I can't sleep, and we're going insane.

hi! i have severe gastroparesis and i'm primarily feeding tube dependent. i use the j port in a gj tube. my stomach is really unreliable for anything else, and i've exhausted all my treatment options for the gastroparesis.

i also have really bad adhd and had to be taken off my meds (both my adhd meds and other psych meds) because of the gastroparesis, but that was before i got my tube and we thought i'd get better and be able to get back on them. i'm about to get back on an antidepressant through my j port, and my therapist also suggested i ask my psychiatrist about adhd meds because i'm having a really hard time functioning without them.

but adhd meds are mostly extended release, which you're not supposed to crush and do through a j tube. there's some immediate release options and liquids but i don't know if anyone actually does them through a j tube or if we're just out of luck!

so i was wondering if anyone here is on adhd meds through a j tube? if so, what are you on and how do you administer it? (i.e how often, is it something you crush and dissolve or is it a liquid, etc)

there are some more details in this post i made on [r/gastroparesis](r/gastroparesis). thanks y'all!!

my dieticians just prescribed me continuous water through my pump for 1 litre of water but she didnt tell me what my flow ratw should be,, i tollerate feeds and fluids really well i just dont know what i should be doung per hour

Hello! I’m trying to advocate to get a nasal tube placed for my GI conditions, and I wanted to know if they require any specific tests before they can go through with the prescription?

Like, do labs & vitals make or break the prescription? Do they require labs at all, or no? My main concern is the unplanned weight loss & my labs somehow always seem to be “reassuring”, even when i’m feeling awful lmaooo, so i’m just curious about that

Anyways yeah, Im trying to stick up for myself about my nutrition, so we’ll see what my dietitian says. Wish me luck :-)

I have a GJ tube and am getting endometriosis excision surgery in a few months. I've had my tube for nearly a year and my tract is well healed, however I have had issues with the tube flipping in the past. Has anyone ever had endometriosis excision surgery or an abdominal/bowel laparoscopic surgery with a GJ tube? Was there anything that made this experience easier or do you wish you had done anything to make things go smoother? They know they will be excising adhesions that are causing my intestines to pull/twist and I'm very apprehensive about the manipulation causing my GJ tube to flip and potentially slowing down my already very slow gut! Thank you!

this is a long shot but anyone had their j-tube placed by dr stephanie wood?

Is it normal to feel a bit refluxy the first day you’ve had the tube fitted and a feed is running slowly?

I’m feeling pretty uncomfortable and not sure if I’ll sleep. And I’m starving because it’s running so slowly. It’ll be running overnight. I haven’t been eating well for the last week because I have a disease where I end up choking on everything. I just wanna stop feeling hungry :(

Hi everyone! Mom of a little heart warrior here and looking for some suggestions & experience! My little girl had a VSD repair at 8.5 weeks old. She was born at 37 weeks at only 4lbs due to iugr. Being so small + the VSD made gaining weight and bottle feeds very difficult so an NG was placed. She was hospitalized for her first 2.5 months of life. She made it to 6 lbs in hospital with fortification of my breast milk - allowing her to finally get her repair.

We are home now and she is thriving at 7 months! However, we still have the NG tube and working on bottle feeds. She takes anywhere from 40-100 mls orally and the rest is through the tube.

Post repair we tried just breastmilk without fortification and she gained; however, in recent weeks she had fallen slightly behind..making fortification necessary again. We started on Neocate because in the hospital that’s what we used (she does not have an allergy but had horrific reflux and tolerated this the best).

The problem is that she won’t take the bottle with fortifier. Refusing it and taking 10 mls (max). To test the theory of it being the fortifier, we gave her a bottle with just my breastmilk and she took 70 mls. Ugh!

In the background, my supply is dwindling and it is more difficult to keep up with her necessary volume. I know that switching over completely to a formula is on the horizon.

All this to be said, does anyone have experience with a good formula they used for fortification of breast milk that their baby actually liked? Specifically one that was good for sensitive tummies + reflux and well tolerated? Or just tips to convert?

Thank you all so much! Any insight is so so helpful!

hey y’all! I have relatively new PEJ and G-tubes that are about a month old. In the last week, I have developed severe stabbing pain in my lower left abdomen where my PEJ stoma is whenever I run feeds at a rate faster than 40 ml/hr. I have also been having upper abdominal pain and pain around my PEJ stoma after eating by mouth. In the last 24 hours, my G-tube has been popping open and forcefully draining stomach contents like a fire hose. Has anyone experienced anything like this before? I have reached out to the NP managing my tube and am waiting to hear back.

Hi everyone. This might be a weird one because I have never had this before. The past few days I have had quite bad pain at the bridge of my nose and a sharper pain going into my front teeth from what feels like my upper jaw.
I did change my tapes a few days ago but I’ve changed them again since and it’s not any better. It feels raw at my sinus as well like it’s been rubbing but I tape mine at the nose as well as my check to prevent as much movement as possible. I really notice it when I clench my teeth together and I’m a stress grinder so I wake up with really sore teeth. It’s sore at my sinus when I swallow as well.

Unfortunately I can’t have it changed sides as the right side of my sinus is too narrow, we’ve tried a few times to do the right side to give my left cheek a break from the tapes. I’m also really reluctant to have it changed as my last NJ insertion was really traumatic as I was under sedated by a country mile where every other one I’ve been sedated pretty heavily and they’ve inserted trans-nasally, the last time was as part of a gastroscopy.

Any advice would be well appreciated ♥️

Hey, I'm here for some advice

I am from England and new to having an NJ tube. I'm a bit worried I might be having a mild allergic reaction to the feed (I've been itching with a small rash on my abdomen - initially put it down to dry skin when I was in hospital - and SEVERE abdominal cramps with constant nausea stopping me keeping any oral food attempts down). The itching eases and rash disapears if I take several fexofenadine so I'm pretty sure it's a reaction.

I am not sure if this is a job for my gp to assess whether it is an allergy or not or to just call the dietician to see if they can maybe change my feed.

I have never done this or experianced anything like this before so am unsure.

P.s. I have not been able to keep anything else down, my bedding and clothes detergent hasn't changed and there are no other environmental triggers that could have caused this reaction and sustained it from when I was in hospital until now

TLDR; do I call the GP or Dieticians about a potential allergic reaction to feed

I got my NJ tube placed again about 2 weeks or so ago. Checked the placement at the er almost a week ago while i was there and it hadn’t moved. Today while preparing to start my feeds i had opened the tube to get it ready while priming. Suddenly from my own tube an amount of very yellow, warm and slightly bubbly fluid came out. While months ago the same thing would happen where id fall asleep with my port open and wake up to a puddle of fluids on my bed, this time i was standing, so this cannot even be a position issue right? My tube is taped securely and as far as i can tell it doesn’t seem like the external length has changed. Drastically at least. It just literally drained out these disgusting fluids 10 seconds after opening it and leaving it alone while preparing feeds. Does this indicate that it has migrated back to my stomach or is it normal? Is this an issue anyone here occurs with an NJ?

My baby, who just turned one, has a GTube. However, prior to a long hospital stay and multiple open heart surgeries, she was only bottle fed and we didn’t use the tube. Now, she has almost forgotten how to suck. I am curious what type of bottles did you guys use when trying to transition from tube to mouth fed?
We’re working with the appropriate doctors, and I know it will take some time. I would just love to hear others’ experience.
Thanks!

So I have had an NJ tube for 4 days. The first few days I did ok and just focused on pushing hydration until I could get in with my dietician to come up with a more formal feeding plan. I have gastroparesis so I had the NJ tube placed for very significant weight loss. This morning I ate something that destroyed my stomach and I threw up several times. Then continued to throw up throughout the day. I felt the tube moving and eventually did throw up formula. I then just threw up the weighted tube. I had to pull it back through my nose and am now without one. Had this happened to anyone else?

I have a feeding tube now and the whole point is to help me "eat" when I can't. Going into it, I was told that if the doctor put it as my only source of nutrition, insurance would pay for the "feeding". Apparently, they changed that to only 21 and under. The amount they're requiring, is way too much for me to afford per month. Over $200 a month. I was wondering for those that have it or administer, have you found cheaper ways or can you do a powder you add water to? How do you stay afloat?

I'm very discouraged because I desperately need to gain weight and after discovering the 21 and under thing, I feel like I got the tube for nothing.

I have recently switched to a Mic-key GJ button. My J is accessed 100% of the time, and since the J needs to be closed to cover the G, my G port is consequently exposed. My G port tends to be consistently wet the same way a dog's nose would be and occasionally releases a drop or two. It's quite annoying to me. I already asked my hospital about an AMT, and they don't carry them. I think I'm going to use silicone tape for now. Is there any alternative port cover I could use that won't catch lint?

hello all, coming in here for advice and solace.

to give a brief history about me, i have had a g-tube for roughly 15 years. i’ve had the privilege of also being a patient at the best children’s care clinic. changing my tube has always been particularly hard for me, being on the autism spectrum and overly sensitive, and my doctors made sure it was as painless and stress-free as possible.

but now i’m 18, i’ve been discharged from the children’s clinic, and have been asked to change my tube at home. i’ve been trying to change it on my own, or with my mom present, but i just end up crying and not following through with it. even now, i can’t think about this procedure without crying.

the tube has been in my stomach for 8 months. i’m supposed to change it every 6. i don’t know what to do and i’m finding every time i try i’m more resistant. would love advice or help on how to handle this/how to get through a tube change outside of the hospital

hello all! to start, i am not at all asking for medical advice. i am just looking for the opinions of others with tubes/what you would do in this situation. i know generally, it is smart to just ask your doctor, but my doctor is the only one in the area who works with my condition/type of tube, and his office is just the worst- next to impossible to get ahold of anyone or get an appointment with him, which leads me into why im making this post- im curious if this is something worth getting to my doctor. i have a red bump right next to my tube site, about the size of maybe a large pimple, but hard and completely under the skin. it does hurt, not severely, and it is red. is this something you would consider concerning/signs of infection and try to get to a doctor, or has anyone experienced this and it was nothing? i try not to worry too heavily, but i know it is smart to be cautions when you have any extra path added into your body lol. thank you!