r/feedingtube

what fanny packs do folks use for carrying their pump and bag? wanting to have an additional option to my sling bag.

I’m getting a feeding tube soon, but in the meantime, what do you guys eat to minimize pain but still get in nutrition/calories? I’ve started making cream of wheat and I really like it. Any other suggestions??

Hello all

My g tube fell out at work yesterday and since I dont need it anymore im electing to hopefully have it close naturally......

Right now I have a regular bandaid to cover the stoma site but im not sure if thats better than leaving it open.....

Ive tried various Google searches but havent seen any definitive answers.....

Appreciate if anyone could share experiences / advice.....

Thank you!

THIS IS A RANT! So I’m currently out of formula and have been forced to eat by mouth. I got a gj tube to do formula in my g tube (which does not upset my gastroparesis) and use the j tube as a back up if I have a big flare up and can use my g tube. But with a new insurance I have run into a problem with my doctor not sending over my orders yet and I have run out of formula. So I’m eating by mouth till I can get my formula again. But holy hell do I miss my tube feeds. Food causes me so much pain and vomiting. And I don’t think I’m getting all the nutrition that I need eating by mouth. I hate eating. I hate the act, I hate how I feel afterwards, I hate having to think about food and cooking. It was so helpful in my mental health to be tube fed and never have to worry about when I’d be hungry or what I’d eat and if it caused me pain or not. I have been desperately calling anyone I can to try to get things moving with my formula order but it’s just not working. I’m honestly wondering if I should just go to the ER and see if they can tube feed me there. I know that would be a waste of resources but my mental health is severely struggling 😭

Ever since ive got a tube ive been scared if there was a school shooter my pump would go off. And there is nothing I can do about it, and as school starts again I have to remeber and have the same fear, and the knowledge that the one think keeping me alive could get me killed. That is all, I just needed to get it out because ive been holding this fear in for 4 years and I can't tell anyone because the last thing I want is my mom who alredy has to worry about me dying from malnutrition to worry about me being killed from the only thing that saved me from malnutrition.

I’ve been in and out of hospitals for the past 6 years due to my ARFID which presents quite complex and severely. Nothing is safe orally to me, tbh anything that has to enter my body terrifies me. This means I rely on tube feeding but have had NG tubes for the last 6 years. It’s been spoken about me getting a PEG and doctors are finally discussing it as a long term option for me so I can finally potentially live a better, healthier, more fulfilling life outside of hospitals and stop these recurring admissions. Is there anyone else out there who has a PEG for their ARFID? How do you find it? What challenges do you still face if any? More specifically looking at teens/ young adults, like I am 20 years old, so around that type of age range. How long did it take doctors to finally hear that this is the better option for you? I’m just sort of tired of advocating for myself and explaining over and over and sick of everyone trying to “fix” me and assume one day I will eat. I hate food, I absolutely hate it and I have tried so very hard to eat, but it just backfires massively everytime. I’m sad it’s come to having to rely on a PEG tube, but if it gives me better quality of life than I guess it is what it is.

hey, sorry this is a bit long, im just a little distraught and it’s been a long journey. pls bare with me here haha

i’ve been struggling with rumination syndrome and gastroparesis for a few years now. got dropped by all of my providers because i’m considered a complex case, and no meds so far have been super helpful for me. and yes i know diaphragmatic breathing is the gold standard, but i’m just,,,, tired of it all. i really am. it never seemed to make too big of a difference for me. i’ll try harder if there’s someone who could help more than what i’ve tried, but even practices who specialize in diaphragmatic breathing won’t really take me. plus the nearest program is several hours away from me, which I’d really rather not do. I already went out of state once to go to CHOP a few years ago, but they literally sent me home after the consultation appointment. the program who does diaphragmatic breathing is apparently very selective about who they accept into their GI programs (I’m not sure what it’s based on, but I remember being turned down/redirected).

although there’s been more recognition over the last few years, it’s still not at a point where healthcare providers seem to generally know what to do with a lot of “complicated” GI cases. there’s probably some sort of virtual programs who could help with diaphragmatic breathing, but i still think i’m way “out of their wheelhouse”, which is basically what everyone has said. after a series of meds, tests, and ER visits that never really resulted in anything different, which all went on for years, i started kind of giving up on trying to find any actual solutions about a year ago. the thing about it, is that there’s no designated protocol or anything, so i feel like i only care about managing the complications at this point.

i don’t really know what to do, and i know you guys might not either, which is okay, but i guess it’s worth trying.

the only thing that’s ever consistently worked, has been an ng tube. i’m not sure if this helps with the gastroparesis or the rumination or both. and i know nasal tubes are controversial as far as “behavioral” GI issues go, but i’m really not in a position to try to get surgery, and i also don’t think i’m at a point to even get a surgical tube, and i’d rather not try to campaign for those kinds of tubes if i can avoid it. i’ve had an ng tube for this before. once in an emergency room/inpatient stay (where they eventually said there wasn’t anything else they could do for me as a team), and then they took it out a day or two later. they were originally going to send me home with the tube, but they eventually said it wasn’t necessary anymore and they said that they felt like there wasn’t much they could do moving forward. and then a second time, at a residential eating disorder program (like, psychological as opposed to medical). they understood my situation, but the staff were pretty racist and homophobic and they constantly singled me out. that’s a very common theme in healthcare, which has definitely factored into my treatment a whole lot. like a ton lmao, and nobody’s ever really tried to be subtle about it, so whatever.

now that you have context, my overall point is that an ng tube has been the most successful option, and i don’t really know why, but it has. my team at the residential program (not the staff, but the medical team), were actually the ones who seemed to agree and understand more than anyone else so far. my main doctor on the team was telling me that the reason why the other interventions never worked, could probably partially be because my body tends to be pretty resistant towards medication in general.

Whether I end up with an Ng tube or an Nj tube, I wondered if anyone has any tips for trying to get someone to listen. Medical racism is very real, and I’m losing my steam here. I quit all my favorite hobbies and my favorite sport, because I have no energy. I don’t know if my vitals and labs are normal or not, but historically they’ve been unpredictable, and it seems like no matter how miserable I am, everyone seems to end up telling me my labs look fine. I don’t know what to do. I’ve missed out on everything because I’m always sick, and I’m only 19. I haven’t even started college because I’m always tired or nauseas. I wanna start a dance class, but I can’t, because I have no energy. I don’t even go on walks around my neighborhood anymore. I’m miserable.

Ive had bouts of weight loss a few times in the past, but it was never enough to be a “clinical concern”. Probably partially because I never became underweight (also being on meds that actively counteracted weight loss & caused rapid weight gain no matter what my actual intake was, probably made this a way bigger issue for a few years). As of now, I’ve lost 30lbs in the last 6 months, without meaning to. Over the last year, I’ve lost 55lbs. I went from 271 (this month last year), to 216 (a few days ago). 6 months ago I weighed 247lbs.

With all that being said, I have a relatively new GI doctor. I’ve only seen him once earlier this year, but I think I wanna follow up and basically beg him for some kind of nutrition. I wanna try to avoid surgery in general, because I really don’t think I can handle it (this includes surgical tubes, but I’ll cross that bridge when I get to it if I ever have to). Last time I saw him, he suggested more tests and an experimental surgery (fundoplication i think?), and I considered it, but ultimately it really doesn’t sound like something I’m willing to put myself through if I can help it. I don’t want to do any more stressful hospital stuff, or more tests that feel violating or uncomfortable. An ng/tube wouldn’t inconvenience me even half as much as my GI issues have, not to mention the stress of having to take tests and doing more and more trials and errors. I feel like a lab rat. I don’t want to fix my stomach at this point, and I don’t even really care what’s causing this stuff. I just want to make up for the calories that I’m losing, and I just want enough energy to get my life back.

This was a really long winded way of saying, does anyone have any advice? I’m so tired. I have a relatively new doctor. I’ve only seen him once, at the beginning of this year. He’s seemed nicer than any other gastroenterologists I’ve seen, which could be a good sign idk. And my friend with similar medical equipment endorsed him and said he’s actually the one who got him started with his medical supplies. So this is probably my best bet at getting a tube. I already requested an appointment a day or two ago, but I’m considering sending a message to him directly, in the portal. Should I basically try to summarize the need for a tube before I even book an appointment, and should I try to get booked as soon as I can, or should I just wait for his office to reply to my request? I’d hate to try to rush to see him, just to be turned down or something, but if anyone’s gonna listen it’d be him, and I’ll be honest and say I’m getting a bit more impatient with each day that goes by. Is it worth a shot? I mean, if he says no, then I don’t know what I’d do with myself. But I feel the need to try one last time. I can’t keep living like this, it’s been 3 years, and thats only counting the process of being diagnosed and tested. Who knows how long it’s slipped under the cracks and gone unnoticed honestly

I am a very political person and found out that the formula that was ordered (my mom ordered it so I wouldn’t see details. I have an ED) is from nestle. They have killed and hurt and stolen from so many people. I feel like such an awful person. I know this is kind of a niche worry, idk if anyone can relate. I’m on the verge of tears. It’s already been bought, so the damage is done and I’m going to use what I’ve been given. Has anyone else ever had this problem? :/

hi,

been NJ fed for 6 months, recently diagnosed with delayed gastric emptying and SMAS. Anything I eat or drink comes back up, down to the exact ML of liquid (sometimes 10-20ml stays)

My issue is, IM SO THIRSTY, like I just feel perpetually thirsty like I could drink litres of water if my body would allow it.

does anyone know any way to get used to this or help this? I sip water to combat dry mouth and constantly have popsicles (which I do have to spit out)

My baby girl was born full term at 40 + 3 weeks via an emergency caesarean section due to failure of progression of labour. I was induced and was in labour for ten hours. There were no post birth complications with the baby and she wasn’t in fetal distress during labour. Birth weight was 3.88 kg. She is now 2 weeks old.

She had to be taken to the NICU on the second day due to fast breathing rate and got treated with antibiotics. The next two days she developed jaundice and had phototherapy for two days. In that period she had a feeding tube inserted due to poor feeding. She would take up to 20 ml and lose interest in the rest of the feed. She was investigated to find the cause of her feeding issues and nothing was identified.

The feeding tube is in place and she got discharged from the hospital.

Now I have noticed that even though she is still hungry after taking a few mls from her bottle, but she still loses interest and cries a lot. I have to give her the rest of her feed through her tube because she becomes inconsolable and doesn’t want to take the bottle at all.

Is she going to eventually start taking full feeds with the bottle? Is there a possibility that she is used to the comfort of the being fed through a tube and will have difficulty with oral feeds because of this?

Thanks in advance for advice!

Sincerely,
A distressed mum.

Currently don't have a tube but I'll be talking to my GI about one because my GP has gotten to a point I'm getting saline infusions to combat dehydration (and insurance won't cover vitamins...) and it's just not enough anymore (multiple other issues like rumination syndrome and GERD too but) we've tried just about everything for my GP and after learning about it a couple years ago it started to make sense why other medications "never worked" for anything especially pain because they were just in my stomach the entire day...

Something I'm having an issue with figuring out is that I take Metoprolol ER and my other meds I can crush or are liquid already so I'd have no issue with those but idk if I'd be able to find another version of my Metoprolol cause the non extended release I've tried and it seemed to hit me all at once (once it digested) and I almost passed out so I can't currently think of how it would be different going straight to my intestines instead of stomach

But I can't go without my metoprolol because of my pots so I'm 🫪

I can swallow just fine, usually, and it's most likely I'll still be eating some while also using the tube but a big part of it is so I can take my meds through it because otherwise it gets regurgitated and I choke or it comes up so violently it goes up my nose shxkshdkdh (prozac is now liquid form due to this)

Anyway, not super desperate for suggestions cause it'll be dealt with somehow eventually so it's alright if no one comments lol but if anyone has anything to help I'll surely listen 💗

blegh just want to complain for a minute. i’m 8 days post op laparoscopic gastrojejunostomy, cholecystectomy, and j-tube placement. despite having my guts rearranged and an organ removed, the most pain i’m dealing with is at the stoma (is that what it’s called?) site for my stupid j tube. any pressure or movement is stabbing stabbing pain at the insertion site.

to be fair, the rest of my stomach is pretty sore which might be heightening the pain i’m feeling from the j tube but fkin hell man it hurts so much more at the site (and also just below it, like more of a sharp muscle pulling feeling).

kinda spiralling because from posts on here i’ve seen people say it can take like a month for it to stop hurting. my j-tube is hopefully temporary to bridge the gap until i can get my oral intake back up, so my doctors only want it in for sure for two months. which means like as soon as the pain starts to go away they’re gonna yank it (hopefully) and i’ll have to start a new healing process 🫠

im grateful for easier access to nutrition as my body heals from my surgery but fuck man it’s not comfortable

I got my G-tube placed 3 weeks ago, its healed really well and Im not having much pain or discomfort with the tube itself but I cannot for the life of me figure out a good way to secure it. I have tried 4 different types of tape and none of them stay on my skin, ive tried griploks which are ok but they start peeling off almost immediately even when I use skin prep, I dont know what im doing wrong. I want to be able to be active but I need to be able to get it to stay in place, any suggestions? I order AMT cinches to try.

Trying to eventually get adequate hydration. Has anyone ran jejunal fluids (not feeds) at high rates, like 200s? Mainly just curious if it's possible or safe to try since there are only 24 hours in the day and I'm trying to maximize my fluid intake. I know J feed rates usually max out around 130ml/hr, just wasn't sure if fluids were different. Thanks!

Hey all.

Our ~2 year old has Cystic Fibrosis and is pretty pancreatically insufficient. He's struggled to gain weight most of his life. With a lot of effort, and taking cyproheptadine for months, he's now up to about the ~12th percentile for weight. However his care team (whom we trust) believes getting him significantly higher should help his pulmonary outcomes long term - so we're going down the route of a g-tube on their advice.

The surgical procedure with a kid this age, as well as the day-to-day logistics of care and cleaning indefinitely, have us feeling pretty anxious. Parents who've gone through similar with their children, what advice do you have? What helped you? What do you wish you knew going into it?

I've been seeing people draw water into ENFit syringes from water bottles. What water bottles do you all use/recommend?

My 5 month old who was on oxygen support for 4 weeks due to holes in her heart has just started an ng tube wean. We are on day 11 and she still is only taking 60-70% of her recommended intake from her dietitian. Did anyone see any progress after the 14th day? Our programme finishes on the 14th day and I’m lost what to do next if she isn’t fully taking her recommended amount. It’s a private wean and we aren’t able to extend it through the company. She hasn’t lost that much weight either so I’m lost as to whether I can continue it myself or what to do next

My son is 15 months old, weighs 7.3kg and has not been growing in weight since he was 11 months old. The dietician gave a calories target of 1000 calories for him to "get back to his gowth line". We're in the hospital right now where his daily intake is being seen. It looks like he'll get to around 800 calories a day. If that's the case, then a tube will get used. He's generally happy and high energy. All his milestones so far have been a bit delayed

Can parents who've had active 15 month olds on the tube please share their experiences?

A part of me wants to try feeding him at home for another 2 weeks. He goes to day care where the snacks are very low calories. The lunch is bread which he does not eat a lot. So if I target these 3 meals, I feel like I might be able to get close to 1000 calories a day. This might work, but I guess the tube will definitely work, so I'm not sure what to do.

My son generally gets very bothered if he his held to take blood or when the hospital put the oxygen measurement thingy on his foot.

I think they will use the nasal tube. We're in the Netherlands

Have had my GJ well over a year, Mic-key button.. fully healed as much as a hole in the abdomen can be and haven't had any issues with it no balloon bursting, tube changes done every 3 months with moderate sedation (judge me if you want but my IR suggested it)

Anyways back to the issue, over the last two months I've had really bad pain like feels like a broken rib on one or both sides and especially hurts when I breathe in deeply .. It's now affecting my being able to J feed my full amount because it feels like once my stomach swells a bit from feeds or drinking by mouth... I can't take a deep breath without it being sharp stabbing pain.

Has anyone else experienced this?

What has mildly helped

Heating pad on my ribs but I don't do it for long because GI told me it's not good for the tube to have the pad on it

Weirdly keeping pressure on my ribs helps too, like holding them still when I am walking when it gets really bad sometimes

Any advice or questions or whatever is welcome. I'm 36 F with post stroke autoimmune triggered Gastroparesis confirmed with GES x2 if that matters

My surgeon sent me home from GJ tube surgery on Advil and Tylenol. Even when I was in the hospital wailing in pain, they refused to give me anything stronger. Is this normal? Im not sure if they assumed I was drug seeking or something but I had just come out of a multiple hours long surgery. I’m now three days post op and my stoma HURTS. Did anyone else have similar experience?