Gastroparesis - Problem w/Fluid Emptying Only - Need help with rare symptom / diagnosis

[YippeeKi YOW !!]

@Howard
Thinking of you, and running the prayer wheel ragged.

Slept very little, and fitfully, which means I'm not sure when I'll crash out today, but please, please, send up a flare when you're able. Am anxious to know that all went well, and you're safe and sound in your tortuous hospital bed. I don't know where they get 'em, but ISIS would probably be interested.

Sending love as ever, and great winds of positivity and hope. I'm praying that @andyguitar is right, and that this will build you up and give you the much needed nutritional support that will allow you to kick-start your life again.

It's hard, and frightening, to just 'let go', but I believe that it's the right thing at the right moment.

Give your LPW my affection and respect. This is hard on her, too. Tell her there's a lot of people on this site who think she's awesome.

As are you.

 

[i-lava-u]

@Howard

 

[Hope4]

We are thinking of you, @Howard and Mrs. @Howard, and sending you love and blessings!

 

[sunshine44]

Hi everyone, Howards wife just texted me to let us know that he is out of surgery and recovering.

 

[Shoshana]

Thank you @sunshine44 !

 

[Hope4]

@sunshine44 Thank you so very much. to you.

 

[Hope4]

@Howard Smiles and and all best wishes to you for today. . We are sending you healing thoughts and sending love.

 

[Howard]

I'm okay. Taking things in stride. Thank you for the well wishes.

 

[andyguitar]

You are a brave man @Howard and I salute you.

 

[Wolfcub]

Prayers, hugs and my very best wishes @Howard as always.

 

[Shoshana]

Thinking of you there, @Howard !

 

[Howard]

They are trying to give me formula through the j tube that contains "Milk Ingredients." I cannot tolerate Milk ingredients, much less whey protein, on a normal basis. It's not just lactose intolerance, it's milk intolerance.

Last year, and despite my life long difficulties, I even tried the nutritional drink named Boost, lactose free, and it caused extensive bloating on Day 1, and diarrhea by the second day.


Is there a reason why I would suddenly be able to tolerate milk ingredients or whey protein, just because it's not going directly into my stomach? Does that sound possible?

 

[Hope4]

@Howard. It sounds risky to me.

The people I know who cannot tolerate dairy, just cannot tolerate dairy in any form. I know two people who cannot even tolerate organic, 100% grass-fed clarified butter.

And I doubt the hospital is offering organic, 100% grass-fed dairy.

If I were the person choosing a menu to offer you, I would find something else:

Egg yolks? Chicken drippings? Plain, unsweetened gelatin? Is pureed meat an option?

If I have it right, @WoolPippi lived for awhile on egg yolks, chicken drippings, and something else.

 

[sunshine44]

ugh, are you serious?

why, oh why.

common sense hospital.

I know there are many things you cannot do in this, but there may be more options like it?

https://www.healthykin.com/p-5409-liquid-hope-organic-whole-foods-meal-replacement.aspx

 

[Howard]

common sense hospital.

Apparently each of their feeding tube products have whey protein or whey protein isolate in them, so I'm going to give it a shot. Maybe this will be the time nothing bad happens!

They explained to me that "Boost" had whey protein concentrate, instead of isolate, so the thinking is that this whey product is broken down already and shouldn't cause me the same issues.

 

[Rufous McKinney]

Its always surprising to discover hospitals are so limited in: what is food. And with so many with dairy sensitivity, also surprising.

I'd send you some if I could: here I have Boku Protein Powder which is vegan, organic, protein from Peas, Cranberries and Sacha Inshi, fairly low sugar (5 grams)/serving 120 calories, this contains chocolate.

If I had a drone...I"d make a drop for yah! @Howard ...Meanwhile you do need nutrition.

 

[Haley]

Unfortunately most dietitians and hospitals only go with what they know...

Looking on the net almost all of the options have whey (or are almost 100% whey). I did come across this one:
https://www.functionalformularies.com/liquid-hope-information.html , but not sure if it would be an option for you @Howard

Hope you are recovering well

 

[YippeeKi YOW !!]

@Howard

Is there a reason why I would suddenly be able to tolerate milk ingredients or whey protein, just because it's not going directly into my stomach? Does that sound possible?

Not even remotely. Tho maybe miracles happen. It isn;t your throat that's reacting to the milk constituents, it's you entire system.

They explained to me that "Boost" had whey protein concentrate, instead of isolate, so the thinking is that this whey product is broken down already and shouldn't cause me the same issues.

Concentrate, isolate, whatever. It's the same thing by a different name, and their argument is specious and contemptible. Both the isolate and the concentrate are broken-down aminos, how ignorant are they?
@Rufous McKinney

I'd send you some if I could: here I have Boku Protein Powder which is vegan, organic, protein from Peas,

If it's any consolation, Red, @Howard had a viciously bad reaction to pea protein and can't tolerate that, either. My suspicion is that, in the case of non-dairy proteins, its the hydrolyzing process that alters the protein chains that caused that reaction.
@Haley

Unfortunately most dietitians and hospitals only go with what they know...

Absolutely right. Moreover, they go with what's easiest and most profitable, and the company that offers the biggest bulk discounts and rewards, usually more or less off the books, gets the contract.

Don;t let them push you, @Howard. Ask for slightly diluted, already liquified, baby foods that you did well on before the hospital. DON'T accept something tht you know is going to be damaging. They won't be contrite after you have another ghastly reaction, they'll just get self-protective and suddenly decide that you're good to go home and the problems will be yours and your LPW's, not theirs. And if there are severe repercussions, the chain of responsibility will have been broken and they can shrug and say, "Hey, not our fault. He was fine when we released him"

 

[Rufous McKinney]

If it's any consolation, Red, @Howard had a viciously bad reaction to pea protein

Funny!! I have had it three times, and it gave me like heartburn last time and I have not actually taken it since. I am often suspicous of powders.

So your lucky @Howard that I don't HAVE a drone.

 

[Howard]

I've gone through two different battery powered feeding machine generators and associated apparatus thus far, and each has broken down before the Magic of Milk Product has reached my jejunum.

Is the universe telling me something?

Thank you for the suggestions on the Liquid Hope.

... and I just realized something, I hope this equipment doesn't cost money, like when I get home and stuff. I thought I'd just be pouring beverages into a funnel or something. But it appears as though there's some high-tech equipment involved, or in this case, low-tech equipment that doesn't quite work the way it's supposed to.

Clearly, my administrative skills are lagging behind.