Anyone J Tube Or Iv Fed

[kim5204]

I am new here and wondering anyone else with autonomic failure have a feeding tube or ivs and how long have you had them. I have nj tube wiaitng on a j tube and have tacyardia low blood pressure. does no ndurologist where I live has ever dealt with this type of autonomic failure and would like to know more aboutlong term survival with feeding tube I just turned 30 and have two very young childern any advice would be really appreciated.

[lieze]

I need help in this area. No experience with it yet.

I developed huge issues with food along with my POTS and weight loss and it still continues to be a big problem for me. My problem is my allergies.

The enteral and parenteral products both contain corn by products and I am very allergic. If that wasn't the case I would have opted for that. I am either not absorbing or just not getting in enough calories and feel malnourished most of the time.

I think nutrition is going to be my next area I try to explore once the disability hearing is over and decided. I'm hoping for the resources to do that.

I'd be interested in hearing what ends up working for you.

[Sheila1366]

I have many friends with gastroparesis and require feeding tubes of all kinds. It is something that I am fighting very hard to stay away from cause I know how difficult it is. So sorry you are having to do your feedings this way, I can imagine as a mom how hard it is for you.

[kim5204]

I have to make my own formula up I take organic baby formula and mix it with protein powder, add some hydralyte, salt water and have this during the day and run fluids salt at night. I cant handle sugar jn the formula they have for j tubes, it makes my symptoms so much worse. I take a multivitiam, calcium, b 12 too. everytime is was hospitalized they would hook me up to saline and with in hours of bei ng off I coulnt stand up striaght heart would beat outof control so this is the only way I can keep my blood volume up enough to even tolerate the feedings. I have another meeting tuesday wi th surgeon to decide on j tube peg j not looking forward to it. kim

[megan2]

I am. Five years ago, I received IV hydration (dextrose, potassium, sodium) a couple of times a week to help with periods of vomiting and reduced intake. When things worsened, we upped my dextrose concentration to 10% from 5%. When I was no longer able to eat, they placed NJ tube initially and then a permanent j-tube. I didn't tolerate j-tube feeds, and am now dependent on IV nutrition (TPN). I have been on TPN for about three years now.

Prognosis varies significantly and depends on the underlying condition, overall health of health, immune system function, the severity and location of dysmotility... Severe GI dysmotility plus dysautonomia is usually due to an autoimmune disorder OR a mitochondrial disorder. Autoimmune Gastrointestinal Dysmotility (AGID), a subset of Autoimmune Autonomic Gangliopathy (AAG) is treatable--motility can improve w/ immunomodulatory treatment(s). Mitochondrial disorders are managed using supplements like carnitine and coq10, but overall, they aren't treatable at this point in time (w/ the exception of MNGIE) and often these patients will experience disease progression.

I know a lot about his stuff and am happy to help answer any questions you might have. Send me a message as I don't always remember to check back on the forum.

[tachyfor50years]

Few weeks a go, I asked my GP to order iv for me, he never listened to me and when I asked why, he never answered me, I emailed him some good articles on the benefits of iv saline for POTS patients.

I usually feel close to normal whenever I had it.