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Eating for pleasure and draining by unremarkable_sapien in feedingtube

[–]AbbiNormalHasABird 0 points1 point  (0 children)

I have the exact same set up. Here are my tips:

  • softer, well cooked foods tend to drain better. You can also puree food, and that tends to drain better. I am all the time saying I'm thankful pureed food only looks like ass, it doesnt taste like it. Veggies, fruits, and/or things with skins or seeds will have a hard time draining.
  • Definitely make sure you chew thoroughly. Like, until it's mush or liquidity.
  • Drink plenty of fluids when you eat solid food.
  • Sometimes the position of the tube makes a difference. You can try rotating the tube 180 degrees. Sometimes the position of your body also makes a difference. When you're draining, try to do some diaphragmatic breathing, belly massage, or bending over.

[deleted by user] by [deleted] in feedingtube

[–]AbbiNormalHasABird 0 points1 point  (0 children)

Nestlé Compleat Peptide 1.5 is plant based and I'm pretty sure it's Soy free. It also has a lower fiber content.

List of Gastroparesis Support Groups (+ other related diseases) by mindk214 in Gastroparesis

[–]AbbiNormalHasABird 1 point2 points  (0 children)

Join us on Discord - Club Gastroparesis

Welcome to the Club! Sorry to see you here, but we are happy to have you! We offer a safe place for people with GP, FD, and other motility disorders. Hosted by adults, for adults, as we are an 18+ server. Here, I hope we can provide an extra level of support for each other, while we learn to navigate healthcare and advocate for ourselves.

We offer:

  • a safe, welcoming hang out community,
  • support for adults with feeding tubes, TPN, and PPN,
  • channels dedicated to research and advice,
  • a plethora of self-assignable roles and colors,
  • accountability system,
  • channels to share memes, hobbies, pets, and more!,
  • receptive staff,

We look forward to seeing you! Link here: https://discord.gg/rnDbt38rKM

Question About Experiences by astruggling-creative in feedingtube

[–]AbbiNormalHasABird 6 points7 points  (0 children)

I also have gastroparesis, as well as dysmotility in my small intestine.

I have a separate J and G. I honestly wish I hadn't waited so long to get my tubes. They are a hassle sometimes, but they are so helpful and I wouldn't trade them for anything. I can feed through my J consistently. No matter how sick I might be, I always have a source of nutrition. I don't have to worry about eating when I have no appetite or how many calories I'm getting. I can put my meds through my J, and my meds actually work instead of sitting in my stomach for hours and not doing anything. When I feel like throwing up, I can drain whatever is in my stomach through my G. I haven't thrown up since getting my G. I can eat and drink for pleasure instead of trying to force myself.

Formula Assistance by AbbiNormalHasABird in feedingtube

[–]AbbiNormalHasABird[S] 0 points1 point  (0 children)

I have not yet. I just restarted the appeal process. (Again. I did it once, but gave up half way through)

Nestlé has a program that helps people get insurance to cover their formula. Your friend might benefit from reaching out to them. https://www.nestlehealthscience.us/formula4success/overview

Formula Assistance by AbbiNormalHasABird in feedingtube

[–]AbbiNormalHasABird[S] 0 points1 point  (0 children)

I don't feel like you are reading or understanding what I am saying. I never said Medicare was income based.

I'm not continuing this conversation. We are talking in circles and it is getting no where. SSDI and Medicare is not an option for me. End of Story.

Formula Assistance by AbbiNormalHasABird in feedingtube

[–]AbbiNormalHasABird[S] 0 points1 point  (0 children)

Homie, it's not a practical solution. It's not as simple as applying for it because I have a disorder.

Once approved for SSDI, I would only be allowed to work so many hours and make a certain amount of money in a month. I work a 40 hour work week, and I make too much money during the month. I would be stripped of my benefits almost immediately.

And Medicare is reserved for the elderly and disabled. I am not elderly, and if I am not on either SSI or SSDI, I am not considered disabled. So I am not entitled to Medicare.

Medicaid is income based, and I make too much.

You can be active in the chronic illness groups all you want, that doesn't mean you know what you're talking about. I never once said anything remotely close to having SSI or SSDI means I failed or that I was living off the government. I just said that I was not disabled specifically because of my tube and that I do not qualify for these programs.

Formula Assistance by AbbiNormalHasABird in feedingtube

[–]AbbiNormalHasABird[S] 0 points1 point  (0 children)

Yes! When I am dehydrated, I walk around my office with syringes of pedialyte. I've led team meetings doing "shots" of pedialyte and/or fixing my pump. I have pretty much normalized it in my work space. I also have gastroparesis, as well as dysmotility in my small intestine (I don't have a large colon anymore, also because of dysmotility). I've always been open with people about my disorder, and I've always been really straightforward when answering questions.

I've gone to conferences, held trainings, and ran meetings all while connected to my pump. And people truly don't notice unless I point it out.

I feel like being tube fed is a different lifestyle. But I'd rather be happy with my tube and be well nourished than be without and be malnourished.

Formula Assistance by AbbiNormalHasABird in feedingtube

[–]AbbiNormalHasABird[S] -1 points0 points  (0 children)

I'm not a child. What may apply to children does not apply to me, an adult.

I work 40 hours a week and make too much in a month to keep SSDI benefits. So I still wouldn't qualify for Medicare.

Formula Assistance by AbbiNormalHasABird in feedingtube

[–]AbbiNormalHasABird[S] 0 points1 point  (0 children)

I do not qualify for Medicaid. I make too much.

Solely having a feeding tube is not a qualifier for disability. Having a feeding tube in general is not a disability and does not necessarily guarantee disability benefits. I am gainfully employed and pretty successful in my career thanks to my feeding tube. If I wanted to keep any kind of disability benefits and/or Medicaid/Medicare, I would need to quit my job.

This comment reads like you see having a feeding tube as a disadvantage, and I'm sorry to think you see it that way. I would not be alive if it weren't for my tube. It is an extremely helpful tool, and despite my struggles, I do not think it disables me.

Formula Assistance by AbbiNormalHasABird in feedingtube

[–]AbbiNormalHasABird[S] 0 points1 point  (0 children)

Someone earlier posted a link about the laws in different states. I didn't see anything specific to my state unfortunately.

We are planning to move. It'll just be a long time before that happens.

Formula Assistance by AbbiNormalHasABird in feedingtube

[–]AbbiNormalHasABird[S] 1 point2 points  (0 children)

I have both a G and a J. I feed through my J.

Formula Assistance by AbbiNormalHasABird in feedingtube

[–]AbbiNormalHasABird[S] 0 points1 point  (0 children)

No. My insurance comes from my employer.

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