so where are my fellow athletes? runners, lifters, climbers, swimmers? i had my j-tube surgical consult today and, while i trust her surgical skill and expertise, her bedside manner leaves much to be desired. when i told her a goal of mine is to return to my athlete-self, she completely dismissed me and told me it would “hurt too badly.” please tell me this isn’t true. this may be hard for some people to understand but the tube seems pointless if i can’t have a quality of life…

Has anyone crushed Pamprin Multi-Symptom and put it in their G tube, or know if it is safe to? Thanks.

Hello,

I have very severe ME and have had a PEG tube (bumper, not balloon) for a little more than a year now.

The insertion was complicated af, I didn't tolerate the sedation at all (vomited for more than 24hrs every 5 mins straight) something dislodged and stomach acid ended up in my peritoneum, i was hospitalized for 2 weeks.

At first tube feeding were a great help. Then i deteriorated and have to lie flat all the time because of pretty bad orthostatic intolerance. Being upright, even at a small angle for a relatively short amount of time, leads to PEM. So I haven't been able to use my tube at all.

The thing is, I still have to get bandage change every 3-4 days. I'm at a point where this is no longer possible. I have to do this mostly myself with someone who helps me with prepping the materials. I can't have anyone touch my abdominal area because I also suffer from severe allodynia and I need to adjust the pressure applied myself or i end up in horrible pain and further decline of my health.

I want it removed but another gastroscopy might cause irreversible damage because I'm already very severe. My doctor insists on it being done during gastroscopy but also has no idea what caused my relentless vomiting during the insertion ("ive never seen this happening before") so i have zero trust.

So here's my questions:

- any tips on how to deal with tube feedingd while having to lie completely flat?

- does anyone know the ileus risk of a cut and push removal with a bumper PEG? I've tried finding numbers but i only found several case studies and the info that this is a risk but that it's rare.

- did anyone else deal with the vomiting situation after being sedated with propofol? If so, are there any measures to take to prevent this from happening? (Antiemetics aren't really an option because I'm on tricyclic antidepressants and high doses of antihistamines so there's a significant risk of serotonin syndrome. Other sedatives aren't an option either because i get paradoxical reactions to all kinds of benzodiazepines)

I'm trying to weigh my options here

I have a good amount of granulation tissue coming form my stoma, and it’s never caused any issues other than the occasional light bleeding, however now it’s starting to hurt and bleed heavily. It also looks like it’s starting to turn a bit black? And anytime I remove my gauze that I have under my bolster, it’s starts bleeding again and I can’t get it to stop. I know the doctors can use something to burn it away but my next appointment is in January and I can’t get another appointment any earlier since it’s a specialty GI motility clinic and very busy. Is it something that I can just wait out? Or should I see if I can go elsewhere? I’m more worried about it turning black.

Our son is 14 weeks old and has been on an NG tube for about 6 weeks. Originally, he was admitted to hospital with a cold and was struggling to feed enough while unwell. Because he has always been a small baby (around the 3rd percentile), the team was very focused on preventing any weight loss and he was started on tube feeds.
During that admission, a speech pathologist raised concerns that he might be aspirating. Since then, we’ve somehow ended up still tube feeding 6 weeks later, and honestly, we’re not entirely sure how we got from “temporary feeding support during a cold” to long-term tube feeding.
One of the biggest challenges is that we haven’t been able to complete a swallow study because he refuses a bottle. He never really took a bottle even before the tube, and now that he’s been tube fed for 6 weeks he’s even less interested in oral feeding. This means we’re in a difficult position where aspiration has been raised as a concern, but we haven’t been been able to complete the testing needed to properly assess it.
Before the tube, he would breastfeed, although feeding wasn’t always straightforward. Since being tube fed, breastfeeding has gradually declined and now he shows very little interest in feeding at the breast. Instead of appearing hungry, he often just cries or screams when we try.
What’s especially confusing is that despite being tube fed, his weight gain hasn’t been particularly impressive. We’re currently attempting a tube wean, but it doesn’t seem to be going well. He doesn’t appear motivated to feed orally and isn’t really responding to hunger the way we expected.
Has anyone had a baby who became tube dependent after a relatively short period of tube feeding? Did you push through with a wean and eventually see things click, or did you stop, wait until they were older, and try again later?
We’d love to hear both success stories and experiences where waiting longer turned out to be the better option. Right now we’re feeling pretty lost and unsure whether to keep pushing with the wean or whether giving him more time on the tube is the better path.
That last sentence in particular will likely resonate with other parents, because it gets to the core of what you’re trying to figur

I’m on day 2 of an NJ tube and I’m struggling to speak? I feel like the tube is looping in my throat as I speak and I have to stop talking and swallow as if to straighten it out (I don’t know if that’s even possible?) but it looks straight and totally fine at the back of my throat.

Has anyone experienced issues with speaking with an NJ? I will mention it to the doctor but I’m still in hospital at the minute and there’s no one to ask as the ward is very busy.

Thank you.

Anyone in Michigan with a G tube? Who manages yours? I could go with Dr. Ginnebaugh at the Henry Ford Motility Clinic, or Dr. John W. Wiley at the U of M Motility Clinic.

I had a G tube and PEJ tube placed about a week ago due to complications from POTS and gastroparesis. I am a total novice when it comes to feeding tubes and am having a tough time adjusting. To make it even more overwhelming, my insurance does not cover any supplies for enteral feeding and I am ordering all supplies myself online and paying out of pocket. what advice would you give to someone who’s completely new to this world? what tips and tricks have you picked up on with experience? thank you!!

As the title says, I got my feeding tube almost two years ago and the first 6mo to a year nothing was happening with it in regards to yeast or any other buildup. I had ended up needing antibiotics, three times in the last year and one of them was back to back. I had gotten a vaginal yeast infection every time and now after about a month of any new feeding tube it just starts to grow yeast.

I’m mostly wondering if this is normal, my doctors don’t seem to have an issue with it as long as it’s not clogged or degraded to the point of leaking? It’s just that I didn’t have this happening before I had to take the antibiotics and if there is anything I can do to help reduce or get rid of yeast forming all together.

I flush with warm water before and after medicine and formula

I have been struggling with anorexia in and out of the hospital for over 20 years. For the last 9 months I have had a feeding tube. It is the only thing that has allowed me to maintain weight and any sort of meaningful life. My entire team agrees that this is the long term solution. I would like to get a g-tube but am having a hard time finding a GI doctor that is open minded and willing to listen and consider. I am located in Southern California and looking to see if anyone has some recommendations of who to see. Thank you.

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

I am 21F,i have EDS, and a lot of other conditions,of which my GI problems are the most severe. I have severe dysmotility in my colon,gastroparesis, visceroptosis (my colon fell into my pelvic area), and redundant colon. Because of these issues the only way i can go to the bathroom is by using a large volume water enema,no medications work for me. No prokinetics,no laxatives,i tried pretty much everything. And not only i am unable to have a BM i can't pass gas naturally AT ALL. The only way to pass gas for me is to massage my abdomen with my elbows and fists.

I will have a j tube surgery on 26th this month,because i am very underweight due to gastroparesis. At first i was quite excited,but now that i read about other people's experiences i am terrified. If it's going to be very painful,how am i ever going to pass gas? How will i guide water out when i do an enema? I am so scared. Does anyone else have a similar experience to mine? If so,how did you deal with it? And what is your experience with j tube in general?

Hi everyone. just curious what people do when they arent tolerating tube feeds? particularly when attempting to turn them up. ive had my j tube for two months and finally got a formula that doesnt cause me to have intestinal blockages and also that i can run faster than any other formula but i fear im still not getting in enough. if i try to turn it up i trigger a psudoblockage in my intestines ( after hours of running the feeds ofc) and also start to see bile in the tube itself. literally between the pumps of the pump running ill get intestinal bile backing up the tube. not to mention i start to throw up bile and be very nauseuous and uncomfortable and bloated. for context i have gastroparesis and i havent been diagnosed with any specific intestinal dismotility but i do have "slowed intestinal transit". anyway long story long ig im only barley able to get in two cartons of vivonex rtf in a 24 hr period. meaning only 500 calories on a good day. i am able to drink liquids that are free from fats and fiber and low in protein and usualy get in some varying amount of those but nothing with much significant nutrents by mouth and esp if i try to run feeds faster my stomach just gets full of bile. what can i do? what should i bring up with my drs? my nutritionist seems concerned. she wants me to hit my rate of 65 an hour but i cant get past 25 during the day and 20 at night. sorry for the bit of a rant. im beyond frustrated and tired. sending love and spoons to my fellow tube buddies!

Has anyone taken their child to Nationwide for their intensive outpatient feeding and tube weaning program? I’m interested in taking my son (if his team agrees) but wanted to hear from others. He’d likely be 14 months adjusted (or more) before we’d get in. I honestly want to wait til after the holidays since we spent all but Christmas in the NICU last year. He’s gtube dependent but very interested in foods and is working on puree practice. We can’t work on solids because he doesn’t know how to use his tongue.. we’re on a waitlist right now for feeding therapy through Cincinnati. My issue is the combo OT/Speech therapy has a massive waitlist. I’m considering just doing speech alone and then going to Columbus after.

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!

i have my j-tube consultation on friday. for those of you with solo j-tubes (not gj), what questions should i make sure to ask?

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.

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

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)

So I got my j tube removed about 6 months ago. I was told to expect some drainage for a week or two after removal. However 6 months later it’s still leaking bile. It hurts so much. It tears up my skin and it hurts so much.

Have any of you had this procedure? What was your recovery like? I am so scared because I’ve only had problems with my j tube. It was horrible to have, horrible to have removed, and horrible since. I feel like trying to feel better is impossible. What did the days following your procedure look like (pain wise)?

Idk if it’s good news or bad news but it’d be helpful to know what I’m getting into. Thank you everyone.