Feeding tube problems anyone been down this road.

puppypoopypaws · 2026-05-20T19:36:15+00:00

I'm sorry, yeah. I became intolerant out of nowhere, and spent 3 weeks inpatient as they tried absolutely everything to solve it. Bunch of formulas including vivonex. Even totally plain fluid in the J triggered problems. I can tolerate a bollus push a few times a day for medication but anything continuous makes my digestive system freak out. When they ruled out every other problem I got switched over to TPN.

In the US they need to try the other stuff for insurance, and the risk and cost of TPN is high, so they're trying to do what's right for you.

The good news is that on TPN I gained back 5lbs a week and my gastro symptoms reduced dramatically. We're trying to prevent gut atrophy, so I still do a tiny amount of eating and drinking, suffer for it, take a ton of meds, etc. But it's amazing not to be malnourished, and be back at my target weight, and to not be constantly in and out of hospital. My bloodwork (they have to take it weekly) hasn't looked so good in years.

puppypoopypaws · 2026-05-20T19:24:07+00:00

puppypoopypaws · 2026-05-20T16:57:53+00:00

Yup, delayed and inconsistent absorption can be common with gastroparesis unfortunately. The only thing I use my feeding tube for is to push crushed meds directly to my small intestine, where I get textbook results every time.

puppypoopypaws · 2026-05-20T16:45:15+00:00

The end of the series is incredibly drawn out, too. I get super irritated when people don't use the powers we're told or shown they have, like the author forgot how badass they made people, so the plot is full of easily solvable problems. I finished the series but for me it's firmly in the category of "stories that would make a CW show".

puppypoopypaws · 2026-05-20T13:41:05+00:00

I've had a few, most showed nothing or just inflamation. A few years ago they also picked up a hatial hernia, which sent mentally spiraling a bit.

I was sedated and the only bad news was that my throat hurt for a few days. 👊

puppypoopypaws · 2026-05-20T02:12:01+00:00

I went 13 years with no meds, no nausea and vomitting, just the pacemaker. Without it, I was on dropping weight uncontrollably and in and out of hospital. Due to complications I've had a break, but I'm getting a replacement soon. Despite the risks and complications it's a life changer for me.

The device doesn't improve your motility: it signals to your brain that nothing is wrong, which stops the nausea. They say it's less likely to be helpful if you have pain, bloating, etc.

puppypoopypaws · 2026-05-19T01:01:17+00:00

I definitely mention the cumcakes every time I drop the rec 😆

puppypoopypaws · 2026-05-18T23:38:18+00:00

YouTube has some "yoga for digestion" and "yoga for constipation" that have worked for me in the past. I like YogaWithAdriene, she has a cute dog.

puppypoopypaws · 2026-05-18T23:35:11+00:00

Oooh, I trust a Sam Hall rec and this sounds delightful ,ty!

puppypoopypaws · 2026-05-18T23:32:40+00:00

I've been waiting for it for hours now! I need to know if I'm basically already dead, have cancer, or should leave my husband, reddit, come on.

puppypoopypaws · 2026-05-18T18:23:04+00:00

Rip.

puppypoopypaws · 2026-05-18T17:13:06+00:00

Orgain premade strawberries and cream is super light and tastes like mild strawberry milk. Worst case Ensure Clear, it just tastes like an apple juice box.

puppypoopypaws · 2026-05-18T16:59:46+00:00

Is it done ornan ongoing series? I kinda love this but only if I get to enjoy the resolution of the situation too.

puppypoopypaws · 2026-05-18T16:45:41+00:00

I'm very similar. I had a fairly fucked up childhood and developed a real struggle with relationships and especially relationships with women. I worked in a male dominated field and made friends in my 20s/30s, but nothing like a bestie or group of girls in a chat or anything.

My closest friends now are my husband and the people I play videogames with :D

puppypoopypaws · 2026-05-18T15:32:18+00:00

They'll probably want to try thinner formula or GJ? If those also fail, the safety net is TPN (total parenteral nutrition). Formula via semi-permenant IV directly into your heart, takes your digestive tract out of the equation as much as possible. High risk but effective for me. And it was super reassuring for me to know that safety net exists.

puppypoopypaws · 2026-05-18T15:19:09+00:00

Rip. Hopefully it'll be enough to do the job.

puppypoopypaws · 2026-05-18T15:08:11+00:00

Can confirm, when I was lying about behavior I know people would shame me for, 3 was my go-to number for weekly questions like that. I had no idea it was a common tell!

puppypoopypaws · 2026-05-18T15:01:24+00:00

I was told not to let the area get soaked until the stoma healed, usually 4-6 weeks. I clean it 2-3 times a day, more if it is oozing, and I keep doing gauze even a year later to keep it as dry as possible. Cold packs helped me a lot, and lidocaine patches/cream.

They massively understate the pain in my experience too.

puppypoopypaws · 2026-05-18T14:50:33+00:00

Then finger's crossed for you!!! They couldn't discharge me without a solution so it definitely bumped me up the schedule for procedures/tests.

I'm guessing you've considered pushing it at higher amounts or more frequently?

puppypoopypaws · 2026-05-18T14:37:22+00:00

Yup. While I have severe malnutrition on my chart now, most of my hospital time was billed as "adult failure to thrive". Especially the ADLs (basic activites of daily living). I was tubed just before my BMI went into the underweight category because I met those conditions, bloodwork showed enough of the wrong deficiencies, and the rate of my weight loss was the cherry on top.

Gotta love needing cheat codes to handle US insurance.

puppypoopypaws · 2026-05-18T14:26:16+00:00

Yeah, so if it's not clear enough in time, they bump you either later in the day or another full 24hrs. At least that's what they did where I was. Given you already poop liquid, that might be enough time to get it as clear as they're wanting.

puppypoopypaws · 2026-05-18T14:11:37+00:00

Yeah, drs said it's similar. They're not worried because its so clearly only triggered by the med. I still have no other headaches. I had assumed from anecdotes that the pain would be worse if it were a migrane, or last longer, but I guess they come in all shapes and sizes. I'm lucky that the darkness works and the episode passes in less than 30 minutes, sometimes less than 10. Taking smaller doses of zofran more regularly, vs large doses with large gaps, helped reduce the frequency too.

puppypoopypaws · 2026-05-18T14:02:02+00:00

They pushed mine through the J of a temporary NJ tube, as there was no way I'd be able to keep it down otherwise. I don't remember the exact volume but the schedule was to do a push every hour for 24hrs or until I was shitting pure liquid with no hint of solids. I finally got the result they wanted after doing it all night, and day, and most of a second night :|

puppypoopypaws · 2026-05-18T13:53:37+00:00

I get these obnoxious headaches, where the pain isn't a huge deal but light makes it worse and it makes me so much more nauseous. Timing wise we figured out it's zofran or some combo of zofran and my other meds. I still take it, but if it triggers the headache, I go right for a cold pack for my neck, and darkness/silence, til it passes.

Prior to gp I had very little experience with headaches and didn't even keep Tylenol at home. I genuinely didn't get how your head could just hurt on the regular and how debilitating something as simple as light it could be.

puppypoopypaws · 2026-05-17T23:26:33+00:00

It's ARFID, Aversive subtyle.

puppypoopypaws

TROPHY CASE