Gastroparesis help!

[HopeFox]

Hi there! My name is Hope

I’ve been a vegan on and off since I was 18 (I’ll be 25 in less than a month). I was managing fairly well until recently in which my gastroparesis (paralysis of the stomach/damage to the vagus nerve) over the past 5 months has meant my diet literally consists of Fortisips and Calogen. Obviously this is not vegan and I was wondering if anyone knew of any alternatives that I could purchase that could then be prescribed by my doctors/dietician (currently in hospital long term).

I am awaiting placement of an NJ tube as even on my current diet, I cannot maintain my weight, I have multiple deficiencies and my hydration levels are often poor. When the NJ tube is placed (I expect to be waiting a while, this is the NHS after all) does anybody know of any vegan tube formulas as the ones available on the NHS are not vegan either.

Veganism is very important to me and I really want to get back to being fully vegan (I am completely vegan apart from my fortisips/calogen). I just think there must be something on the market for people like me? I’ve tried googling but much of what I find is vegan weight loss shakes which is the opposite of what I need! Not giving up without a fight!

Anyone else in this boat?

 

[silva]

Hi Hope! I don't personally know anything of gastroparesis, but a vegan feeding tube formula did come up in an ad for me once, it was this one--

Kate Farms | Plant-Based Tube Feeding Formulas & Shakes

--although doesn't look like shipping to UK now
or
Liquid Hope - Basic Nutritionals

I also found this-

Plant-Based For Gastroparesis – Gutbliss

Tube feed for vegans – Crip HumAnimal

Of course your own health is paramount, and you can do so much good for animal rights even if you can't follow the diet yourself now
I wish you the best!

 

[Lou]

Over here we call NJ tubes NG tubes. I've had one - they really really suck.

a G- tube is a much better solution. It's a much more expensive procedure. I suppose it depends on how long you will have to have it. A G-tube is for 2 months or longer. an NG tube is best for just short periods of time.

Last winter I had a mild case of cancer. the radiation treatments eventually made my throat so swollen i could not swallow liquids. I was given a feeding tube (a G-tube) I had it for two months and for a while before that I was on a liquid diet. At first, I was not able to swallow food. At one point I could not swallow liquids either and had a PICT line installed for hydration ( and chemo) and then the G-tube.

I hadn't even really thought about vegan food. but my sister brought it up and my RD got me some Liquid Hope. My medical insurance even paid for it.

I was told that you could live forever on Liquid Hope and water. I was also told it just feels like forever.

Its only drawback was that compared to the Nestle product that was originally prescribed it is much thicker so it needs to be watered down. and it also is not as nutritionally dense as the Nestle product - so you need to take more of it. The Nestle product I had was called Nestle Compleat Organic Blends. when I went to get you the link I discovered they now have a plant-based formula. I guess that is new.

Here in America, we have a product called Ensure. It is usually provided to (old) people who have little appetite or problems with eating - although it can be used with a feeding tube. There is a plant-based version - and over here you can find it in the big drug stores. or buy it online.

I did those for a while. they taste much better than Liquid Hope.

Like Silva, I have heard of Kate Farm products. but I've never had any.

If you have any questions, send me a PM.

Liquid Hope - Organic Whole Foods Feeding Tube Formula - Functional Formularies

Compleat® Organic Blends

Compleat® Organic Blends are the first and only organic, real food tube-feeding formulas that provide complete nutrition through a combination of fruits, vegetables and chicken.

www.compleat.com

Plant-Based Protein Shake - Vanilla | Ensure

 

[HopeFox]

Thank you @silva for the helpful links, I’d heard of Kate Farms, such a shame they don’t deliver to the UK!
@Lou the NJ tube is similar to an NG tube but it is longer and runs directly into your intestines when the stomach doesn’t work properly. Thank you for the useful info, I will look into Liquid Hope!

 

[Lou]

Thank you @silva for the helpful links, I’d heard of Kate Farms, such a shame they don’t deliver to the UK!
@Lou the NJ tube is similar to an NG tube but it is longer and runs directly into your intestines when the stomach doesn’t work properly. Thank you for the useful info, I will look into Liquid Hope!

OH! I didn't know that. That sounds even worse than an NG tube.
How long are you going to need it?
I just looked it up and found there is a J-tube. this is like a G-Tube but goes into the small intestines.

And check out the Nestle Plant-based option. I liked the Nestle product better than the Liquid Hope because it was faster. and now they have the plant-based option.

 

[HopeFox]

@Lou I’ll have it for as long as it takes to get me on the list for a surgical PEG-J, as I’ll need artificial nutrition for the rest of my life. Unfortunately it is a chronic illness. I am unsure about Nestle due to the ethics of their company but I certainly will look into it.

 

[Freesia]

Garden of life has a meal replacemnt but it isnt complete as needs other things added like oils and some fibers.... i hope you find smething...

 

[Lou]

Um. I wonder if the food needs to be different for you. since the food is not going into the stomach. You'll have to check with the doctor.

When I got my G-Tube I was expected to get all my nutrition thru gravity feed. But that was too slow and I continued to lose weight. So they gave me the Enteral Lite pump. But I could not tolerate high speeds, so getting adequate nutrition was still taking too long. I wish I had gotten the backpack for the pump. that way you are not tied to an IV stand all day long. So be sure to ask for the pump and the backpack.

I went online to find a picture of the backpack and found this. I wish I had known there were video instructions on YouTube. I just had the manual and mostly just figured stuff out on my own.

 

[Lou]

I was thinking some more about formulas and did a little research.

I'm assuming that you are going to need an "elemental" formula. Which is as I understand is synthetic. so it should be vegan. One vegan wrote to nestle about their Vionex product and Nestles says that it's vegan except for the Vitamin D.

I also watched a few of the Gastroparesis Queen's videos. You should check them out. They are pretty informative. I watched the one after she had her GJ surgery and I think the surgery has improved a lot in just four years. I was not sliced open at all. The surgery was all done endoscopically, and my recovery time was just a couple of days.

Which Formulas for Tube Feeding are Vegan? – Vegan Kitchen Magick

 

[HopeFox]

@Lou I just want to say such a massive thank you for being so helpful and taking the time to help me out here, I really do appreciate it! I’m going to have a look today at Gastroparesis queens videos today as you suggest. I have discussed with my doctor that there is currently no oral vegan substitute that is going to provide me with anywhere near the nutritional value I require in a volume that my stomach can tolerate but I am very hopeful for finding a good tube formula when the time comes, Vionex seems like a good option, even if not totally vegan because of the vitamin D.

 

[Lou]

@Lou but I am very hopeful for finding a good tube formula when the time comes, Vionex seems like a good option, even if not totally vegan because of the vitamin D.

Good luck and keep in touch.

 

[entovegan gastroparesis]

Hi there! My name is Hope

I’ve been a vegan on and off since I was 18 (I’ll be 25 in less than a month). I was managing fairly well until recently in which my gastroparesis (paralysis of the stomach/damage to the vagus nerve) over the past 5 months has meant my diet literally consists of Fortisips and Calogen. Obviously this is not vegan and I was wondering if anyone knew of any alternatives that I could purchase that could then be prescribed by my doctors/dietician (currently in hospital long term).

I am awaiting placement of an NJ tube as even on my current diet, I cannot maintain my weight, I have multiple deficiencies and my hydration levels are often poor. When the NJ tube is placed (I expect to be waiting a while, this is the NHS after all) does anybody know of any vegan tube formulas as the ones available on the NHS are not vegan either.

Veganism is very important to me and I really want to get back to being fully vegan (I am completely vegan apart from my fortisips/calogen). I just think there must be something on the market for people like me? I’ve tried googling but much of what I find is vegan weight loss shakes which is the opposite of what I need! Not giving up without a fight!

Anyone else in this boat?

I seem to have some form of gastroparesis plus a soy allergy. Soy free tempeh from project umami is ok when the stomache is relatively better. Felt sick with gastroparesis issues on kate farms tube feed. Like it would stay in my stomache all night and I would vomit in the morning. Entovegan is vegan plus insects. I can consume cricket protein powder from Exo. I tend to do that and pureed root vegetables other than potatoes since I avoid nightshade. Also ok with cassava. I do not have the worst gastroparesis. I seem fine with fat as in olive oil and raw arugula or Romain lettuce. A lot of people with gastroparesis say they cannot handle those. Biggest issues are with vegan proteins and corn and beans and rice that Is not white rice congee. Cannot handle pea protein powder.