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

[YippeeKi YOW !!]

@Hope4

I can't imagine how GMO dextrose could promote healing.

Dextrose isnt the worst thing, and is probably there to help balance @Howard 's blood sugar requirements.

Dextrose is made from corn starch, and very closely mimics the human body's glucose, so it's a good deal better than HFCS.

WHether or not it'll cause Howard problems, since he's sensitive to sugar generally, is another question, but I think it might be OK.

 

[YippeeKi YOW !!]

@Howard
Casein is definitely a milk protein, but may not cause a reaction in dairy intolerance, as opposed to a straight-forward allergy. It's critical for muscle repair, and is a complete protein with all the essential aminos tht your body needs for repair. It's digested slowly, as opposed to full milk products.

You need proteins for repair following the procedure for the J Tube and the stresses that put on your body. WHether you can get enough of them from 3 eggs? Probably not. Eggs are a good source of full-spectrum aminos, but only have between 5-7 gms of protein, each.

The body's requirement for protein varies depending on weight, physical condition, etc, from between 60 gms/day for a man, to 1/2 gm per lb of body weight cited by another source, lost in the mists of time and ME. In the presence of healing, more protein is better.

 

[YippeeKi YOW !!]

@Howard
Here's a link to the ingredients in Liquid Hope enteric feeding formula. It took a whle to find it, which initially made me suspicious since it makes it seem like they'd rather have us rely on their glowing self-assessment, but it looks pretty benign and positive to me.

https://www.functionalformularies.com/liquid-hope-information.html

Do you react to almonds? One of the ingredients is almond butter.

I'm assuming that none of the ingredients are hydrolyzed or otherwise altered, beyond pureeing, and therefore represent whole, and nutritious, foods, and an excellent alternative to the usual whey protein crap.

As an aside, this doesn;t need to only go thru a feeding tube. It can be ingested orally as well.

 

[YippeeKi YOW !!]

@Haley

If you have trouble with milk proteins I''d be avoiding them!

It pretty much depends on which milk proteins cause the problem: if it's the lactose, the odds are that you can probably tolerate casein, tho 'probably' isn't ideal, and vice-versa.

 

[Shoshana]

I got to thinking overnight, @Howard
and i now see that some other good info and ideas have been added onto this thread, by yourself and others, since yesterday too,

But, I wonder if any simple food type of liquids could go thru the tube, or if they need to include or first have had some prep, such as some enzyme break them partially down first, to sub for (pre-digestion?) processes that the saliva and stomach acids, etc, do. (Is that what those "machines/apparatus" do? Or is something included in the 'formulas' for that, or is it NOT needed? )

I wondered if one couldn't simply use some quality liquid beverages, such as broths of many kinds, or nut milks if you tolerate any of them, or even some sorts of juices (possibly homemade in blender).
Any of those could be diluted, to give the hydration which is the main present goal.

It seems like they are wanting everything to be "fortified" and full of calories and vitamins and minerals, but that might not even be advisable, and if advisable, the formulas might not include the best forms of those,

and that might not be even needed, if you will be able to eat pureed real foods, and some other soft foods, by mouth.

I am hoping for some more positive steps for you, soon, Howard. !!
You have many people rooting for you.


And the hospital staff (some of them, at least) must be getting pretty sick of seeing all of us,
showing up each day, and staying half the night.

And sleeping on the floors and in the halls.

 

[YippeeKi YOW !!]

@Shoshana @Howard

It seems like they are wanting everything to be "fortified" and full of calories and vitamins and minerals, but that might not even be advisable, and if advisable, the formulas might not include the best forms of those,

I totally agree. They seem to have some bizarre bias against the fact that @Howard can tolerate foods orally, at least the ones that fall within the limits of his sensitivities.

Go figure.

And the hospital staff (some of them, at least) must be getting pretty sick of seeing all of us,
showing up each day, and staying half the night.

And sleeping on the floors and in the halls.

Like you, I keep waiting to get kicked out, especially during the wee hours of the morning, or at least charged a room fee. I think we've avoided that because we're all so jolly and such good company that they pretend not to see us.

 

[Judee]

Oh, @Howard, I bet you're hoping they let you go home soon so you and your wife can work all this out by yourself and not keep taking things you know are not going to agree with your body.

It seems like they are wanting everything to be "fortified" and full of calories and vitamins and minerals, but that might not even be advisable, and if advisable, the formulas might not include the best forms of those

I agree with this. Lots of things the medical profession think are "healthy" for us really aren't.

 

[Shoshana]

I have realized, (sometime while napping )
that the machine/apparatus, likely cleans out the tubing, in between uses of it.?

 

[YippeeKi YOW !!]

@Shoshana

the machine/apparatus, likely cleans out the tubing, in between uses of it.?

The tubing has to be flushed, preferably with warmish water, both before every feeding, and after.

The mechanical apparatus requires regular maintenance and attention as well.

 

[Wolfcub]

Just for re-hydration, I am wondering if something like this might work
Water
Coconut water
Salt
Powdered glucose

 

[Howard]

Just a heads up, they are sending me home in a few hours! Hooray!

The dietitian explained that I'll need to find a nutritional fluid on my own, which I mostly expected.

And I'll need to figure out how much fluid I need to flush through the feeding tube apparatus in order to stay hydrated. I'm thinking a liter a day, which is about 33 Oz.

And they'll have to send someone to the house to check on me, for the surgical wound healing.

I think that sums it all up, except remembering to pick up that prescription from the doctor... the one that might help resolve the "fluid" gastroparesis.

I should stop being sick in a few days, too, after all the icky stuff gets out of my system.

 

[Howard]

But, I wonder if any simple food type of liquids could go thru the tube, or if they need to include or first have had some prep, such as some enzyme break them partially down first, to sub for (pre-digestion?) processes that the saliva and stomach acids, etc, do.

I'm wondering the same thing. They don't seem to have a "tube" expert on duty to answer those types of questions. I'm sure there are answers out there in the land of the internet.

 

[Haley]

I'm glad you be going home to rest up and recover @Howard

I think you (and wife) will be doing a lot of experimenting to find something that works well for you. I hope the new meds work and recovery doesn't take too long

 

[sunshine44]

I bet you feel like science experiment right now gah!

so happy you get to go home

you've got this!

 

[Wolfcub]

It's good news that you're going home @Howard I hope you can find some helpful ways to work with this once you are more relaxed and in your own space.

 

[YippeeKi YOW !!]

I'm wondering the same thing. They don't seem to have a "tube" expert on duty to answer those types of questions. I'm sure there are answers out there in the land of the internet.

@Howard
As I've already said elsewhere, sooooo glad you're going home . I know you'll heal better there, surrounded by the familiar and more or less comfortable, and right now, that's what's important.

It's hard to believe that an effing HOSPITAL has no tube-feeding experts on hand, even on a Sunday, but there it is.

Do you know the manufacturer and the model number of your feeding apparatus? The diameter of the tube and the opening at the jejunostomy insertion point (the stoma)?

How long can the J Tube be left in place? Is it temporary?

In terms of your goal of 1 liter of water a day, you need to do it very slowly ..... the small intestine can't hold or process anywhere near the volume that the stomach can. They really should have given you basic instruction at the hospital before you left.

Speaking of upcoming expenses, was your LPW able to get your SSDI reopened?

Will help out as much as I can.

Sending you love as always.

 

[kangaSue]

I wonder if I'm supposed to be sitting up while I'm doing this? I feel as though fluids are getting backed up. My nose is starting to run and burn.

You should be propped up by at least 30° whilst feeding. I was propped on 4 pillows for doing overnight tube feeds.

Or all the CO2 gases in my abdominal cavity from the surgery are pushing the fluid into my stomach and up my esophagus.

This is quite possible. The gases are known to be a cause of bowel ischemia due to increased intra-abdominal pressures on abdominal vascular structures causing reduced blood flow to the bowel, and that can in turn lead to causing a slow down in gastric motility.

They don't seem to have a "tube" expert on duty to answer those types of questions.

Dietitians are supposed to be tube feeding experts. Most aren't but those dealing with oncology patients are probably the most clued up of them.

But, I wonder if any simple food type of liquids could go thru the tube, or if they need to include or first have had some prep

There's plenty of online resources for doing a blenderised tube feeding protocol of whole foods and where bone broths are a common ingredient to thin things down to go through a feeding tube.

And I'll need to figure out how much fluid I need to flush through the feeding tube apparatus in order to stay hydrated.

The "giving sets" that go with a tube feeding pump are supposed to be single use then disposed off so don't need flushing. However, cheapskates such as myself have just run an extra 50 to 80 mls of water through them after the formula to flush them then store them in the fridge for re-use two or three times before disposing of them.
I only ever flushed my personal tube just before and after running the formula with another 20 to 30 mls body temperature water after running the extra water through the giving set, never bothered with 4 hourly flushes when doing overnight feeds..

 

[YippeeKi YOW !!]

@Howard
I'm still boggled by the lack of instruction/direction they gave you re feeding tube before you left the hospital. Hoping that this helps, altho I have no diea what kind of set-up they sent you hme with. But the gerneral information is decent, and applicable to other systems with a little adjustment.

Hope you're ding well. Well, OK at least. And that this will help you hydrate properly, while still allowing normal ingestion of real foods.

Sending hugs and "rah-rah's" for making it thru the hospital stay and all the screw-ups.

 

[Howard]

In terms of your goal of 1 liter of water a day, you need to do it very slowly ..... the small intestine can't hold or process anywhere near the volume that the stomach can.

I've done 100 ml at once two different times. since I'm only doing water, I'm assuming I need to do this at least 8 times each day for hydration. But I really have no idea how much water I'm supposed to be using.

I've felt kind of icky, but that could be left over from the dairy incident. either way, the bloating is gone at least, CO2 and whatever. Bending and twisting me up the stairwell probably helped

There's plenty of online resources for doing a blenderised tube feeding protocol of whole foods and where bone broths are a common ingredient to thin things down to go through a feeding tube.

Once I figure out how to do the fluid and how much to do each day, that would be the next step, finding simple cheap nutrition

cheapskates such as myself have just run an extra 50 to 80 mls of water through them

How much fluid can you do at one time? Does it help if it's warmed up, I would think so? Body temperature, I'm thinking

this will help you hydrate properly,

Thanks for the link, I will check it out momentarily.

I think tonight my wife and I are going to try and figure out how to remove the gauze pad from around the wound.

The stitches, and the stuff they use to cover the stitches, some kind of glassy gluey looking stuff, is stuck to the gauze pad so we'll have to cut around it with the medical scissors they gave us.

It may have scabbed over part of the gauze as well, difficult to tell. It's the original gauze from immediately after the surgery and it hasn't been changed , so we're thinking we should probably change it tonight.

I can't do the flush by myself, I don't have the strength and coordination, but seeing as I'm only doing water, I'm thinking this may not be as necessary to do every 6 hours. Not that I could anyway.

It seems as though the purpose of the flush is to clean food products, nutritional products, things other than water out from the tube. And since I'm only doing water...

So that's my focus. Hydration. Cleaning, cleanliness stuff.

The Cleveland Clinic has what seems to be a very thorough PDF explaining the ins-and-outs Etc. maybe my wife can print it out from work.

Thx

Anyway, thanks to everybody for all the encouragement and the comments and the suggestions and the instructions. I would truly have been lost without all the assistance and help. I may be creatively in tune with the universe, but I am hopelessly out of sync when it comes to a certain way and certain methods of functioning.

Also, it may take me a short while to review each of the posts.

 

[i-lava-u]

So good to see you today @Howard

I hope you are able to rest and recover better, now that you are at home