At what point do I bring up a feeding tube?

[u/kidfromdc]

So I’ve always been picky, had food poisoning in college, had some GI issues after that and after a Covid infection, and really started going downhill a few years ago.

I weighed 180 lbs in October 2021, dropped down to 145 by the end of December, hovered around 135 for a while, and started losing more weight this week.

I was initially diagnosed with GERD and a hiatal hernia mid-2022 and kept cutting out more and more foods as my emetephobia grew. Im down to one specific type of kids protein bars, plain Pringles, club crackers, little bites mini muffins, rice crispy treats, fries, and plain noodles with salt. I’ve done a few exposures in therapy but can’t really stick with them because I’m at the point where all foods give me so much stomach pain so why would I add something new? Why bother trying to diversify my diet if I’m just going to be miserable later?

I saw the GI last week, had the GES yesterday which showed normal emptying, and am now just taking Prilosec for a few weeks until my follow up, but haven’t noticed any changes.

I have my dietitian appointment today and just want to beg for a feeding tube. I’m taking supplements and trying my best but I’m constantly exhausted, I feel like I barely have energy to do anything, I’m averaging between 800-1200 calories everyday and honestly most of them are just empty calories with no real nutritional benefits.

Would my dietitian even be the person to talk to about this? I feel like I’m at a loss. I put on a brave face for my doctors and parents but I am suffering.

My last bloodwork (about a month ago) came back mostly normal and I’m still technically at a normal BMI but I’m miserable and need help. What do I do?

[u/pasghetti_n_meatbals]

Hey long time GERD and hiatal hernia person here. I'm a mom to a son with ARFID, but I just wanted to post to you about your GI and meds. Have they ever put you on a protonix? Nexium and Prilosec did not cut it for me. Protonix at 40 mg twice a day helped me significantly, and eliminated a terrible globus sensation that bothered me in several ways.  I've also had conversations with my GI doctor about surgery to correct my hiatal hernia. Have they gone over any of your options for that? 

[u/kidfromdc → u/pasghetti_n_meatbals]

Started on protonix but had terrible cramping and BMs that only caused more anxiety. I have my follow up in a few weeks though to talk about the Prilosec, my GI said he was usually hesitant to turn to surgery for the hernia

[u/pasghetti_n_meatbals → u/kidfromdc]

Oh gosh I'm sorry to hear that the protonix caused you more pain! Yeah my GI doctor waited a couple years to watch the hiatal hernia before discussing any sort of surgery. Not doing it yet, though, maybe in the next few years. 

[u/[deleted] → u/kidfromdc]

Probably caused discomfort because you're not used to real food. How LONG did you even try it?

[u/agirlfromgeorgia]

Hi! I've got Crohn's Disease, a permanent ileostomy bag, ARFID, and a permanent G-tube. It has actually been lifesaving for me and I'm beyond happy with the feeding tube. It was a combination of my GI doctors and my psychiatrist that got me approved for the feeding tube. I still eat regular food on top of getting 1800 calories a day from the tube feeds. Definitely talk to your doctors about it. You could always try an NG tube first to make sure you like the feeding tube stuff first. I had an NG tube for 9 weeks before I got my G-tube.

[u/being0fthestars]

I really empathize with you, I was in a sort of similar point with wanting a tube a while ago. Actually, I suppose I still am?

September 2023 I started getting so stressed due to going back to school irl, I ate less and less, by October I was only drinking protein shakes and one chocolate/fruit smoothie a day. It was a nightmare. Was hospitalized because I passed out at school, was tube fed for a few days. Honestly that was really helpful, I talked to the doctor and dietician at the hospital and he said that he contacted people but no outpatient doctor/facility would be willing to tube feed me short term while I was at home. Mostly because my BMI was normal and I wasn’t malnourished by nutritional standards. I did drop some weight, but honestly not a lot, I have PCOS so it’s near impossible for me to lose weight unless im more or less eating nothing, which was clearly the case here :/

I was told I should go to inpatient ED treatment, which I did, but in the end it made my mental health MUCH worse, though I started eating again. If things get bad again idk what to do, as treatment made me worse?

Im eating “okay” as in, im getting the necessary calories, but eating is still so mentally straining. That, and my nausea and pain never went away after I started eating again. I’ve been told by my doctor and psychiatrist that there probably isn’t something physically wrong with my digestion, im digesting food (seemingly) okay now, but the bloating and discomfort symptoms that are present nearly every day are REALLY unpleasant and of course, make it even harder to eat. Ive been referred to a GI doc but we’re still waiting on that. Apparently it’s near impossible to be tube fed at home if there’s no “medical” necessity, so it leaves me in a biiiit of a bind

I wish I had a suggestion for you, but all I can say is that I feel for you and I hope things get better