r/feedingtube

I have been searching for a dietitian who knows about tube feeds and how to manage them as weight fluctuates, to help me continue to gain weight. Ideally they would also have knowledge about and experience with treating malnutrition and GI issues. I’m really struggling to find someone who treats tube fed patients and knows about these things, as so many dietitians focus on weight loss rather than gain, or things like sports nutrition, pediatric nutrition, diabetes management, etc, etc.

So for anyone who is tube fed, are you seeing a dietitian who helps you, and how did you find them??

Our son has been g tube fed since birth, and now that he’s getting more active and turning in his crib at night, the chord is getting tangled and we woke up today to part of it around his neck, which was obviously very concerning. How can we avoid this and are there any products that help? We use a sleep and have moved the medical pole to one side of the crib, but hea starting to do 360 turns throughout the night so that alone isn’t doing it! thank you

So I have had a surgically placed j tube for about 3 years, but last Thursday the balloon failed and the tube was coming out, I pushed it back in and saw my surgeons office on Friday. They were willing to replace the tube but I had been having a ton of problems with it so we ultimately decided to remove it and let the area heal deciding that short term I would have an NJ placed. This has been an extreme battle to get but finally after going without any nutrition throughout the weekend I’m scheduled to get the NJ tomorrow. What should I know about having an NJ vs the J tube? Anything I should do to prepare for this change? Any advice is appreciated.

Is there anyone who can tell me a positive story about their infant who weaned from the ng tube and ate orally?

My now four month old got a feeding tube and has had it for a month. She got it for FTT and did not take sufficient volume. She has reflux, mild dyshagia and a CMPA. Prior to the tube she was taking 15-18 oz a day. Now she is not even taking three and it is sending me spiraling.

It is easier to spiral to the negative and I need positive. Please help!

Hi - If you guys have to crush tablets to administer them via your tube, do you do them one-by-one or all together? I see everyone saying different things!

If relevant, I have an NJ, I've done both but not noticed a difference really.

Before I start, I'm already going in to urgent care today to have my site looked at.

I've been having a lot of complications with my tube since it was placed two weeks ago, including two replacements due to the anchor balloon rupturing twice, and then a gastric obstruction. So, it's safe to say my site is PISSED.

Since my second replacement, and obstruction, I've been having this awful, burning, stinging, awful pain around my site, along with muscle soreness. And some pinching from my t-tacks. I thought it may be infected, but it doesn't feel like infection pain. It's not hot, or throbbing, or deep. There's redness, but it's staying pretty small, and not spreading. It's extremely sensitive to the touch, and the pain worsens when I move, or lie on my left side. It's affecting everything I do, because it's so incredibly painful. It feels like getting a sunburn, on top of a road rash.

I should also mention, that my anchor has been deflated since my obstruction, to prevent another one, and to prevent another rupture, to avoid replacement. So I've had to just keep it taped down to my stomach.

I can't sleep. I can't bathe. And I can barely walk. It's absolutely killing me.

Does this sound like granulation tissue?

I currently have an nj but it’s causing a lot of irritation and pain so we’re looking at putting in a j tube. what was your experience? did you have to get admitted for the surgery? what is the recovery/maintenance like? i’m still weary if this is the right choice but right now it’s my only option so please let me know your experience!

I got my NJ tube placed one week ago and since then I have been having persistent pain. My head aches, my throat is super sore, my septum hurts constantly, and even my teeth and eardrums hurt. It is getting worse and only goes away for an hour or so after I take Tylenol. This is not the first time I’ve had a tube, but the first time it did not cause me this kind of pain at all. The only difference is that this time I have a bridle on the tube. Is that why it hurts so badly? Will it go away? It only seems to be getting worse with time.

I've had my tube for two weeks as of today. And I want it out. I've had complication, after complication, and it's causing me nothing but pain and stress. I've had to have it replaced twice because the balloons keep exploding, and I had a gastric obstruction because the third tube anchor was inflated into my gastric opening. My site is sore, and raw, and I just can't fucking function. It's bad enough I can't eat. The feeds give me diarrhea, and I've just let them because if I don't have diarrhea I don't poop because I can't strain my abdomen. My tube is currently just taped to my body to stop it from falling out because they had to deflate my balloon because it gave me an obstruction, so it has no stability and is just pressing on the nerves in my stomach and causing me pain.

I want to give up. I want to just tell them to take it out and fuck off. I don't want to do this anymore. I don't sleep. I can't eat. I can barely walk. I can't take care of myself. I haven't started gaining weight yet, in fact I'm losing it more.

Someone tell me there's a light at the end of this long, dark, harrowing tunnel, and that it's worth it. Because I genuinely feel that I'd rather get shot in the chest than keep doing this.

I got a call from the post acute center about 30 minutes ago and they said she pulled out her feeding tube and will be taken to the hospital. She is 78 and had a stroke about 3 months ago. Is this a serious emergency? because im kind of freaking out over it right now. I just went to visit her this afternoon also when they put the new feeding bag on, I even asked her about the tube and if it hurt. I hope I didnt give her any ideas, she seemed to be happy when I was there. The hospital they are taking her to is an hour away, so im wondering if this is common or should I panic?

My two and half year old has a rare genetic condition called Harel Yoon Syndrome. It's a mitochondrial disease. The doc is wanting us to discuss with GI next week getting a gtube. Both PCP and genetics are in support of this and say it will allow us to focus on enjoying our time with Emma and not worrying about the food / medicine issues.

I'm freaked out about the need for a gtube. It seems like a rather big and invasive thing... Am I overthinking this and it's not going to be all that bad? Of course, I want my kid to get the nutrients that she needs, but it's just such a big thing in my head.

Please be kind and offer any perspective to help my wife and I through this change.

Thanks in Advance!

My partner (33M) just had an NG feeding tube placed last night because he has been continually struggling with oral food intake for a while dude to repetitive problems with his mouth and esophagus throughout his cancer treatments. He had been loosing weight for a while an reached the point where they can not move forward with his surgery safely until he can gain some weight back so him and his care team agreed that the best option for him was a feeding tube.

The tube was placed late last night (It took them 4+ hours to get the tube placed properly because his stomach is currently displaced due to his sarcoma) and they started him on a trickle feed. From my understanding, they are being a little cautious because they want to see how he tolerates the formula.

They fed him again today and are encouraging him to attempt to eat orally as well to maximize his caloric intake, but they weighed him (they've been weighing him every day as he's currently in the hospital) and he saw that he's lost about 1lb since yesterday.

Even though it's 1lb, seeing his weight go down at all is causing him immense anxiety so I wanted to know what others' experiences were.
How long did it take you to gain weight once your feeding tube was place?
Did you initially loose weight?
Once you started gaining weight, how quickly did you gain?

I plan to talk to his doctors and dietitian tomorrow and unfortunately, don't have all the details right now because I haven't been able to stay in the hospital with him like l'd prefer to be (I had to go back to work and have been visiting him after work each night), but I'll be spending the weekend with him. For now though, I think hearing about others' experiences might help him out a bit.

There are some days where it’s so insanely difficult to do my feeds due to my rumination syndrome, I was wondering if anyone also struggles with staying consistent when they’re in pain. I typically have 4 bottles of the 1.5 Kate farms and whenever I eat solids or swallow things after I regurgitate I’m in pain for so many hours roughly 20hrs when I consume solids, And some days it’s worse than others I also have nausea when I do (+ a bunch of other things) , and I literally cannot do my feeds without feeling even more nauseas leading to vomiting and discomfort, I wondered if anyone struggles really bad with them some days

hi friends!! i decided to come to this subreddit because the situation is so specific i need to explain it in depth. please dont think this is a sob story lmao, im genuinely asking for advice.

So, to start of i used to be in residential treatment for an ed / ocd compulsions regarding food. i had an ng tube for ~3 months. during that time i was only allowed to be inside, so no home leaves, walks, etc. after 6 months of treatment i got discharged in december. since then ive had very bad gi issues, ive been rushed to the ER several times, where i received IV fluids and anti nausea meds. im currently still in the process of getting a diagnosis (suspected gastroparesis), but alot of doctors are saying im faking my symptoms. to be clear: i dropped out of school because of this. im bed bound 80% of the time because im in so much pain. i cannot consume enough calories by mouth and since i have experience with ng tubes, i asked my doctor about it. they said there was no way they would do tube feeding at home, i explained that im familiar with how everything works, i was even allowed to do it myself in treatment while being supervised. they said the only way they offer this type of care is inpatient, in the edu. which wouldnt make sense to me, because my symptoms arent in direct correlation with ed behaviours. and being in that type of setting could possibly cause me to relapse. i got the ng tube initially because i wasnt gaining weight, on it i gained enough weight, then they pulled it and discharged me and i was dropping weight again despite consuming the same amount of calories and participating in the same amount of movement. im on meds to speed up the motility of my stomach, but its only doing so much.

any advice would be very appreciated!! much love to everyone here.

Hi all. I have ALS and just got a peg a week ago. I explained to my surgeon that I am very physically active. I mountain bike, hike, cave, etc. But this surgeon ignored all that and gave me a 36 centimeter tube.

I want to modify mine so that I won't accidentally rip it out doing some type 2 fun. Basically, I will cut the tube down and make a detachable extension, plus being able to connect something more than 60ml syringes.

I can't seem to source the enfit connectors, though. Specifically, french 20 end caps male and female (but down with binaries).

Does anyone know of a source for small quantities of enfit parts?

Thanks.

I did not think I would end up in this position. I have recently moved from one health board to another (Scotland). The first health board said they recommend NG Tube feeding due to weight loss and 4+ years of requiring support to meet baseline needs (still underweight). The new health board have said they will only do so if I have a Diagnosed swallowing or absorption issue.

I am diagnosed with Disease related malnutrition, but this apparently does not qualify.

2 Diatitions believe that NG feeding is the way to go, one suggesting PEG, but the hospital team that get to make the final decision due to need for a day bed, have said no. (NHS Tayside)

I am rapid loosing weight, I hate being thin, I have always hatted it. But they are happy to watch me starve, Ive lost a KG in 3 days, Im only 5ft 1 and weight 37.7kg. I don’t know what to do. Ive been on the drinks for years. I get sick and lose a ton of weight, and then it just wont stop. I have no apatite, I feel sick when I eat, I am dizzy. I have Inaproprate sinus tachycardia (medicated) and now this is going mad as a result.

I am a wheelchair user too, and this has made going places incredibly tiresome, my pressure risk is sky high also now. I am terrified I am going to end up in hospital. I hate hospitals. Additionally I require to be mentally sharp for my work, Word smithing is my job, I can’t think properly at all.

What do I do? I can’t even speak to these people.

Apologies for the wording, I am incredibly stressed by this.

I’m using Alum for my granulation tissue. Has anyone used it to dry the tissue out and make it go away? How long does it take?

Hi everyone!

I saw these Drizzilicious mini rice cakes at Target and have heard great things about them! However I’m a bit worried that they won’t drain through a 24 French MIC-KEY. Has anyone tried?

Thanks!

If you’ve had multiple could you explain the differences between them in how well they worked and what you were able to drain from them?

I have a 16-French G tube that’s only for draining (they tried to place a 20, but couldn’t get it in. Which makes sense since I was a 14 at that point).

It drains okay, but there are times I wish it was easier.

I have to sit in certain positions or bear down and hold my breath to encourage it to come out. (I can’t use a syringe to draw back it vacuums the tube shut). And if anyone is wondering I have a dangler, not a button, which is actually my preference.

I don’t eat food. So all that needs to come out is stomach contents and liquids on rare occasions.

I haven’t wanted to go up in size, but I don’t know exactly why lol. Maybe just because I hate change 😅 but I’m getting my tube changed soon so it’s been on my mind.

Looking for home blend recipes if anyone can help, ideally healthy high protein and nutrition,

Low fat/fibre possibilities?

Thanks so much!