u/thatoneweirdcreature

Ive had an nj tube for about a month. It’s where I get all my nutrients from. Meanwhile any food I try to consume orally has continued to make me sick. In fact it’s gotten even worse over the past month instead of better. I’m constantly asking the doctors for a more long term solution because we have no clue how my illness will progress. Meanwhile the doctors keep refusing because “there’s a small chance it’ll go away on its own.“ And yes, potentially this could go away in a month or two but seeing as I’ve been struggling with this for years, it’s continuing to worsen, and many patients with this illness have it forever, I think it’s perfectly reasonable to begin looking at long term solutions. It honestly feels like I’m just waiting for the day they finally realize we need a more sustainable source of nutrition.

Lidocaine and chloroseptic have done nothing to soothe it and I always have throat pain. At times it’s pretty unbearable. It hasn’t gotten any better and every thing I’ve read said the pain should have lessened after the first couple weeks. My doctors have no clue why it still hurts. Anyone have advice? Please?

I’m in my fourth week now with an nj tube. It’s put me in the hospital every week since placement, I’ve had to have tubes changed cause of kinking in the tube, and the clogs are constant. I can’t just keep going to the hospital every week and needing to fix clogs multiple times daily. I have to go in to have them unclog the tube again tomorrow because we couldn’t get it unclogged ourselves. They’ll try changing formula in the hopes that’ll work but said they don’t know if it actually will. If it doesn’t, what should I expect? Would that mean my body just isn’t compatible with it? Would they suggest a different feeding method? Honestly I just want to know what to expect.

Right now I’m on an nj tube and we’re going to be trying all these therapies but if they don’t work (which honestly they never have before so I don’t really expect them to) then we’ll look into more long term options such as a gj. Right now anything by mouth causes horrible stomach pain for hours. For example, yesterday I ate half an ice cream bar. My stomach still hurts over twelve hours later. If I were able to drain food from my stomach after eating it, would that stop the pain?

When I first got my feeding tube two weeks ago I was 40.8 kilos. We’re making progress!!!

My hands have horrendous circulation. My hospital likes to do IVs through the hand for procedures and every time they can’t get my hand and have to go through my arm. There are times where my fingers will literally turn white because lack of blood flow. I drop stuff multiple times a day because of it. I think it’s cause of the beta blockers Im on.

As of right now my doctors are adamant that if I just have the nj tube for long enough then my gastric issues will go away, my stomach will work better, and I won’t ever need a surgical tube. I think it’s unrealistic because I’ve had gastric problems for as long as I can remember and even with getting nutrients to my intestines via feeding tube, whenever I try food that does go to my stomach I just get extremely nauseous and bloated. How long did it take for your doctors to realize you needed a more long term solution?

Edit: giving more context, I’ve had the nj for two weeks now. I’m still in a LOT of pain, can’t swallow properly, and last night at 4 am I had to spend over an hour getting it unclogged. The tube also causes my throat and stomach to spasm which is excruciating.

My tube blocks my throat which makes swallowing any solids difficult. I also can’t swallow super light liquids like water or Gatorade. My stomach won’t accept full liquids (like smoothies) either. So far clear soup broth, butterscotch candies, and chewing gum are my life. Despite my tube feeding directly into my intestine, my stomach still feels hunger so anything to help is greatly appreciated.