r/feedingtube

Husband has ataxia and it wajust determined that he can't eat by mouth. They say that he needs a peg. This is a man who was a chef and food is his passion. His choice is a peg or hospice. Does anyone have any suggestions on how to approach him with this? Is there anything that can be provided so he can satisfy the need for taste? Any and all suggestions to make this easier are welcome.

just wanted to thank anyone who’s commented on my posts the last couple days :) i started my first NJ about 5 days ago and while the first few days were pretty brutal, today we managed to increase the rate to 20ml/hour and keep it there for the whole day with no pain!! i know i still have a long way to go til i get up to my goal rate but honestly a few days ago i was ready to give up and didn’t see how i could get through this. shoutout to the one person who suggested being totally npo while we increased, that was definitely the biggest help!! now we keep our fingers crossed that we can keep increasing and that weight gain is all i need to fix my SMAS :)

I (20F 5’1) talked to my pcp who sent me to a nutritionist. I am diagnosed with hEDS, POTS, Fibromyalgia, Autism+ARFID, and they suspect MCAS and Gastroparesis but I’m still in testing for those two.
My nutritionist is extremely concerned about my daily intake (less than 500calories and 2-6oz of fluid a day is all my body can manage) but she said she doesn’t have the authority to order any tests or tubes but she does think it’s something I need, GJ is probably the best option because of my extreme sensory issues anything on my face absolutely will be rejected. I sent a message via MyChart of the note from the nutritionist recommending TPN or GJ to the person who did my endoscopy and is going to do my colonoscopy next month- he was the only person listed under GI but I’m not sure if he was actually the right person to contact? Ik it’s the weekend rn and I won’t hear anything back yet for some days. Right now (the last week but esp last 3 days) I’m struggling even more with any oral intake everything keeps coming back up and idk what to do- I’m so weak. Whenever I go to the hospital because I feel dehydrated/weak/etc they say I am hydrated (even though I’ve had 12oz of fluid at most for the entire week and my urine is close to red in color) and I’m given iv ibuprofen, Tylenol, or Benadryl and sent home. They say “my body is over compensating because of how long I’ve been this way” idek what that means. I’m not sure what my next step should be. Thank you.

Hello Everyone,

I’m wondering if there are others like me who also have to be tube-fed for over 10 hours per day.

How do you manage your daily life around it, especially when you're bored or need to leave the house?

Thank you for your tips.

My Step Daughter. Has just had a RIG-J tube installed and is having itching and discomfort, and sometimes pain around the site. It's all a very new thing and she asked me if I can find about other people's experiences in the 1st few days to help her know what's going on. She prefers not to Google it and go down a rabbit hole for her anxiety.

Can anyone help, say how it was for then, how they dealt with the feelings of the site and made themselves more comfortable

My sister's body has started rejecting a feeding tube after 30 years, and the doctors are not willing to replace it or help us in any way because its either not their problem or against hospital policy to help her.

She has about a month left to live before she finishes starving to death. How do we get her eating as fast as possible after 30 years of tube feeding?

We are looking for anything that will help her survive one more day while we try to find a doctor who is willing to help us instead of telling us to let her die because she's disabled.

So my dietician is really concerned about my weight and inability to eat enough food or drink enough meal replacement. She thinks it is time (and has been for awhile) for a feeding tube. What feeding tubes are safest for hEDS and suspected MALS and SMA? My endometriosis also makes me throw up a good bit. My research is saying NJ? How uncomfortable are there really?

A nerve block helped a little with MALS for a few days, and they’re doing a nerve destruction in 3 weeks. If that doesn’t help enough they may do more SMA imaging. Ultrasound was positive for both but CT-A scan was negative for both.

I’ve never been able to maintain or gain weight my whole life and have been underweight for 2 years. I’ve gone sub 90 twice (I’m 5’5 so that’s really bad) in the past 2 years and am getting close to that again. One allergic reaction or flare up can make me loose a lot of weight fast, and it takes months to regain just 5 or 10 pounds. I’m feeling scared and emotional to get a feeding tube but the damage happening to my body isn’t okay. Some people in my life are saying I don’t need it or that it’s not fixing the root cause, so I guess we’ll see what my GI and the rest of my care team says.

I have been thinking about feeding tubes for a while and have come to the conclusion that I think getting one would be very helpful for me. However I don’t think I met the typical criteria to get one. I am at and able to maintain a healthy weight and generally able to eat two meals a day. But doing this takes a lot of mental effort and I spend most of my time thinking about and planning for where and when and what I can eat. I think having a tube and having the option to not need to eat while still being fed would make this much easier and may make me enjoy eating more when I do so. Has anyone had a similar experience and been able to get a doctor to give them a feeding tube? Thanks for any help.

I'm about a week post op for my first tube, it's been a rough one, and Ive read generally that it takes about two weeks to really start feeling "normal" again for most people.

But is it more comfortable to bend and move around after having the T sutures removed? I'm fighting for somebody to remove them for me because interventional radiology where I had it placed isnt wantinh to remove them/follow up.. I'm just hoping once I find someone willing that it will be way more comfortable.

2, will I ever be able to lay on my side again? I was always a side sleeper but because of how much it pulls it hurts to even try.

And finally 3, can anybody else with a gj feel their j extension? Like it kinda feels like in some cases like it could be poking me from the inside maybe? But it's hard to say if it's that or internal bruising still. I think it's the j extension though because it hasn't really changed in severity when I accidentally move wrong and it seems to follow right where it goes into the jejunum. It hurts so much to laugh because of it, I want that to get better cause I miss laughing with my partner 😭

had to stop nj feeds again tonight. i know it’s normal to have some cramping, and i was doing okay with that today, but after having a bit of broth and yogurt for dinner while running at 10ml/hour my SMAS pain just got so severe so quickly. doctor ordered them to stop feeds.

i just feel like a big baby right now. i know it can be uncomfortable but this pain gets unbearable. but it doesn’t make sense to me because the tube is going past the compression. it was just too much to handle.

so now we wait again for the doctors to come in tomorrow. i don’t know what their next steps will be and im scared honestly. i feel like i failed and i should’ve been able to push through but it was just so so painful.

We are heading to Disney World in August and I will be on my feeds daily. I have an Omni pump and a adult sized backpack that I would prefer to downsize some given how hot it will be. Has anyone found a smaller one or a crossbody bag that fits the pump along with a 1000ml bag of formula? Also, I have a GJ button. Any advice on what I should I cover it with so I can enjoy the water parks.

Thanks for any help!

i started NJ feeds yesterday for SMAS. we started at 20ml/hour and it caused my SMAS pain along with some pretty bad cramping. paused it for a bit, pain lowered, then switched to 10ml/hour, which while causing some cramping and nausea, didn’t cause the smas pain.

today they advanced the NJ further bc they thought the pain at 20ml was because it wasn’t all the way past my duodenum/the compression.

since then it’s been running at 10ml, and i’ve had a steady climb of cramping, and now my SMAS pain is starting to trickle in too. i’m just confused because I seemed to tolerate the 10ml yesterday but today my body’s saying no.

idk i’m just worried right now, i don’t know what the next steps are for me. my doctors originally wanted to place a PEG-J right off the bat but I insisted we trial NJ first. i don’t know if this is just normal adjustment or if this is failing, and i’m confused why it’s continuing to cause the SMAS pain now that it’s supposedly past the compression. and maybe im wrong on this but if this is failing why would a surgical tube work better?

any advice/similar experiences would be appreciated :)

I’ve had a GJ tube for about 7 months and have always had issues with it flipping. My doctors have mentioned that my anatomy makes it challenging to position during placement (and stay in place). My current tube has been working well the past few months but I notice that it will rotate on its own depending on my body positioning. When I’m upright (standing/walking) the tube is angled vertically but when I sit or lay down the tube turns 90 degrees so it’s laying horizontally. It naturally turns back and forth between these two throughout the day depending on my movement- I usually don’t notice it at all.
I’m curious if this is normal/something others have experienced? I know they arent supposed to be rotated so it makes me a bit nervous that this is happening on its own accord. It’s never flipped a full 180 and so far seems to be working well so I haven’t questioned it!

I’m a 48F. I had a stroke in April 2026, and it completely flipped my life upside down.

I spent about 2 months in the hospital. At my worst, I couldn’t walk or talk. I had to write everything down to communicate. I also dealt with constant blood draws and IV attempts because my veins were difficult, including being woken up in the middle of the night for labs.

On top of the stroke, I got shingles across my back and chest, which made recovery even harder once sensation started coming back. Between that and everything else, most of my time in the hospital was just trying to get through the day.

Since being discharged, I have made progress. I can walk again with a walker, and I can speak without needing to write everything down. That part still feels unreal sometimes, but I’m grateful for it.

My biggest issue right now is swallowing. I can’t safely eat or drink, so I have a PEG feeding tube.

I’ve been working with home health PT/OT/SLP, and I’ve been doing swallowing exercises consistently. I’m trying really hard to stay on top of it.

A few weeks ago I had a modified barium swallow study at the hospital to check progress. I was actually hopeful going into it because I’ve been working at it.

The test itself felt very rushed. I was given a few different food textures to try under fluoroscopy. After I couldn’t swallow the second round (no aspiration), the test was basically stopped immediately.

Afterward, when I asked what they thought, the response I got was very blunt and discouraging—something along the lines of there being “no meaningful recovery” expected with my type of stroke, and I was sent out pretty quickly.

That experience really messed with me mentally, especially because I’ve still been actively working with therapists at home who are seeing progress and encouraging me to keep going.

They’ve reassured me that recovery is still possible and that they wouldn’t keep working with me if they didn’t think there was room for improvement.

I’m trying not to let one really bad experience derail everything, but swallowing is still my biggest hurdle and it’s honestly scary.

I’d really like to hear from anyone who’s had a brainstem stroke or serious dysphagia after a stroke:

• Did your swallowing improve over time?
• How long did it take?
• Anything that actually helped?

When this started, I wasn’t even aware it was happening. I had just been discharged from the hospital for something unrelated, and the next day I started noticing I couldn’t speak clearly, swallow properly, or walk without holding onto things.

I’m staying as positive as I can and I have a solid support system, but I won’t pretend I’m not scared about what recovery looks like from here.

Thanks for reading. Any experiences or advice are appreciated.

I usually use saline spray but I can’t travel with it. Most soap is also too large to travel with.

i have SMAS and after a while of waiting in hospital, we finally started my NJ feeds tonight at 20ml/hour.

I’m just getting mildly concerned because i’m getting a mild version of my usual post eating pain. like it’s in the same spot, same sensation, just not as bad. i’m confused i guess because i thought because it was past the compression there wouldn’t be pain.

can anyone with smas who had nj feeds chime in with their experiences? is this just normal adjusting or do i need to ask my team to lower the rate?

So I took my gf for a feeding tube insertion today.

I was under the impression that we would be taught how to use it and given the supplies at the hospital.

When we got there we were told that the dietitian would visit us at home to teach us how to use it and give us the feed.

I refused because I’ve read about possible complications and I was told I’d be given training on how to manage these things.

So we refused to get it done before we had received the training. All the NHS guidelines have said that we shouldn’t be sent home without receiving training and supplies.

Is this normal? Should we have stayed?

Thank you!

so i’m currently waiting to get my first NJ placed for SMAS. I’ve been admitted to hospital for 5 days now, and have continued losing weight. they placed an NG last night (genuinely awful experience) with the goal of advancing it to an NJ this morning. it’s now 6pm and there’s no longer a chance of it being placed today. which means another full day of barely eating anything and severe pain after the few bites i can manage. and an unnecessary full extra day of having the NG in.

just so frustrated right now, i understand that things come up in hospital but the later we start feeds, the longer i have to stay in hospital to be monitored for refeeding. they also have not been following the dieticians orders and keep giving me creamy soups instead of broth, even tho the cream ones cause way more pain.

one positive is i’ve gotten somewhat used to the NG pretty quickly. last night was genuinely awful, i was in sensory overload and couldn’t swallow at all, only slept for 4 hours (with the help of lots of melatonin). today it just feels like the start of a bad cold.

My mom and I are going in a cruise leaving out of Vancouver. Has anybody flown into Canada with their feeding supplies and had any issues. She used nutren 2.0 and prosource tf20