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

[Howard]

I have no idea what kind of set-up they sent you home with. But the general information is decent, and applicable to other systems with a little adjustment.

Thanks. The video made sense. I just don't think anybody else is doing what I am doing. The process. Yep, always trying to be uniquely difficult here

I've got the 70 cc syringe and a plastic container that holds up to 500 ccs, plus a bottle full of water.

Process

Pour 100 mL water into plastic container.
Set aside.

Remove plunger from syringe.
Set aside.

Open tube (remove rubber stopper)
Hold tube upright, left hand.

Put empty syringe into feeding tube.



With right hand, slowly pour 100 mL of water into syringe.
Water drains through feeding tube into jejunum.

Remove syringe and replace rubber stopper.

Each of the instruction sets I've pulled up only explain the process of putting nutritional content into the feeding tube, so I would assume water is different - no need to flush, because there's nothing to flush except plain water

They're supposed to have some kind of nurse person come out tomorrow, probably to check on things. And I think they are specifically familiar with tube feedings. At least, I think that's the idea here. So unless something seems totally out of alignment here, I'm probably good to go... besides determining volume, and solving volume related questions.

 

[CantThink]

I have this problem. Lost 26kg through it but gained some back while pregnant as being pregnant and breast feeding has helped the gastroparesis (homones?!).

In my case, the doctors kept saying all was okay but that the symptoms were spot on for gastroparesis- they could not understand that it was not solids but liquids that was the issue. As my stomach was always full of liquid sloshing about, I rarely felt hungry (just like dieters eating soup to fill up before a main meal) and constantly felt nauseous.

I can literally move my abdominal muscles and you can hear the liquid like water being tipped up and down in a bottle.

In the end they gave me prokinetic dose of erythromycin (50g every 6 hours). It helps somewhat and without the side effects of the other gastropresis meds. I definitely have less nausea while taking it.

My motility from stomach down seems to have been affected as I also struggle with colonic inertia so the opoosite ends to you. I agree that a feeding tube would need to bypass the stomach entirely.

 

[kangaSue]

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

Are you talking about through a feed pump or by syringe?
By syringe with just (warm) water, I have put about 200ml through in an hour, going very slowly but with drawing water up into the syringe with the plunger in place so gravity can't do its thing. I wouldn't and haven't done that with an enteral formula.
I've always been told that the maximum that you should push through a tube feed pump into the jejunum is 120 ml/hr, be it water or an enteral formula, and if any more, you're likely to cause diarrhea, and possibly severe pain too.
I could tolerate 110 ml/hr very well (water or an enteral formula) when all was going well, but many people can't achieve that sort of flow rate and it's quite an individual thing. With just water for hydration though, I would often run 500 ml through the pump at 110 ml/hr until it was finished.

 

[YippeeKi YOW !!]

@Howard
As a guideline re: water, 240 ml is one cup of water. A liter is a little over 4 cups, or approx 960+ mls. 100 ml is approximately 3 1/3 oz's.

And you're right, probably a good idea to use warm water as opposed to cold, which might shock the monkey, and to avoid tap water, depending on the quality in your area. If using bottled water, and it's been stripped of all minerals, you might want to add back some trace minerals in feeding water.

Hope you're doing OK this very early morning.

 

[YippeeKi YOW !!]

@Howard
How're you doing this AM?

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.

Am beyond being surprized anymore by anything the hospital has done, but I would have assumed that they would have changed your dressing and checked the surgical incision before they sent you home.

Am hoping that you decided to wait for the nurse's visit today. This would be an ideal job for a professional. Assuming that they send one.

Sending you both hugs and hope

 

[Howard]

How're you doing this AM?

I'm decent.

Am beyond being surprized anymore by anything the hospital has done, but I would have assumed that they would have changed your dressing and checked the surgical incision before they sent you home.

Am hoping that you decided to wait for the nurse's visit today. This would be an ideal job for a professional. Assuming that they send one.

Hydrate

The wife and I were able to get in approximately 400ml of water yesterday. At times, nausea was a deterrent, but it seemed to work out best if I stayed between 60 - 80ml at a time.

I'd like to find a way to keep the water warmer, probably wrapping the water bottle within the heating pad prior to dispensing. Perhaps that'll have a positive impact on the process.

Hold the Gauze

Replacing the gauze was a trying experience, but we finally got it done. There's some residual gauze stuck within the scabbing, but it's external and not within the operational opening. Plus, there doesn't seem to be any redness or infection type of stuff going on either, which is outstanding, considering eight formerly open (now stitched) small wounds - one which was a slice and the others more laparoscopic in nature.

Food

Since we weren't expecting me to be home yesterday, we weren't really prepared on the groceries, however, I was able to knock out 760 calories. And today I have a healthy assortment of options, including lots of applesauce, a banana and eggs.

My other focus will be on ingesting the probiotics. My gut is still very unwell after the dairy inundation, and I've already been sick once this morning, and twice yesterday.

Thankfully, it's been five years since I've had anywhere near this type of intestinal distress, and despite my more recent physical issues, I'd forgotten how rotten a person can feel after loading up on any type of poison (besides the high fructose corn syrup incident). I'm hoping abstinence will clear a quick path to recovery.

But perhaps this suffering is somehow necessary, or shall play a vital role in my future dealings.

In any case, I think each of us needs easier lessons, now don't we?

Nurse Chorus Nurse

I'm not sure what's going to happen with the nurse thing, because they said I have to have a primary care physician in order to get the ball rolling, which I clearly do not have. But there's money to be made, so I'm sure they'll send somebody out.

Funny

Collections just called me from the hospital, saying they couldn't release the medical records to us until the medical bill is paid for in full.

So it begins.


Rain

We've got rare morning showers here in the desert, 66 degrees, overcast from end to end, and only topping out at an unseasonably cool 80 degrees this afternoon. Most years we do not receive any rain what-so-ever during the month's of May or June.


windows ajar
humid breeze blowing
a mechanical flight unfancy
passes presently
overhead
overheard
birds birding
and basking in
glorious water droplets
dropping
feathers shedding
happy hints
and clues
melodically dispensed
within the air apparent

 

[i-lava-u]

I'd like to find a way to keep the water warmer,

What about a baby bottle warmer?

 

[i-lava-u]

BTW, I like the poem you wrote on your last post, it gives a nice visual...it is raining out here today too. A lot. Yesterday it was sunny and nearly 80 degrees

 

[YippeeKi YOW !!]

@Howard
Regarding hydration, thought you might like this:
https://www.chronicfatiguediagnosis.com/2010/04/04/fatigue-and-water-balance/

The author is also a fellow MECFSer.

 

[Hufsamor]

been sick

Sorry for asking, but does this mean ?

 

[Hufsamor]

windows ajar
humid breeze blowing
a mechanical flight unfancy
passes presently
overhead
overheard
birds birding
and basking in
glorious water droplets
dropping
feathers shedding
happy hints
and clues
melodically dispensed
within the air apparent

I love your poem.
This painting is about the window and the breeze.
(But no birds and no droplets)

 

[Hope4]

I'm decent.
...

windows ajar
humid breeze blowing
a mechanical flight unfancy
passes presently
overhead
overheard
birds birding
and basking in
glorious water droplets
dropping
feathers shedding
happy hints
and clues
melodically dispensed
within the air apparent

@Howard. Thank you so very much for making beauty out of words. You are amazing.

I am sending you best thoughts for healing and all things blessed.

 

[Hope4]

@Hufsamor. I took "sick" to mean sick to the stomach, as in nauseous, vomiting.

Your picture is beautiful and calming. Thank you.

 

[Hufsamor]

Here is the bird, and even your cat has sneaked herself into the frame

And I believe the weather is right
(Painters name -of both windows- is karen hollingsworth)

 

[Howard]

Sorry for asking, but does this mean ?

No problem

For me, feeling "sick" entails a poisoned sensation. An urge to get rid of my intestinal content, with overall lethargy / exhaustion.

Occasional severe bloating, cramping, and loose stools, as well.

edit: yes, nausea, too!

My illness may have originally started off with food poisoning, and then eventually these were my daily symptoms for 3 years consecutively, but not since late 2014.

After many diet changes in the past five years, I finally eliminated all the offending food items, I think.... and unless I'm being stupid.

And I like the images... not quite my windows, but both are very agreeable.

I like window's framed, and then framing again, the outside. Multiple layers. Mystery abound.

 

[Howard]

Thank you for the compliments on the poem. It's enjoyable finding an occasional escape into reality.

 

[Judee]

Collections just called me from the hospital, saying they couldn't release the medical records to us until the medical bill is paid for in full.

Can you see if they have any type of hardship fund? Of course it would depend on your household income level? Also I'm not sure if you have insurance. Sometimes that disqualifies you but other things might help so I would at least call and ask.

Also this website said it is in your favor to get your medical records before paying the bills in case there are errors: https://www.nerdwallet.com/blog/health/medical-records-compare-hospital-bill/

This same website also had another link on options on how to pay your bills which also included the hardship fund idea: https://www.nerdwallet.com/blog/finance/pay-medical-debt/#hardship

Hope you are doing better physically at least.

That poem is absolutely beautiful. OMgoodness, you really can write, @Howard. You need to try to self-publish a book of poetry.

 

[Jessie 107]

windows ajar
humid breeze blowing
a mechanical flight unfancy
passes presently
overhead
overheard
birds birding
and basking in
glorious water droplets
dropping
feathers shedding
happy hints
and clues
melodically dispensed
within the air apparent

I love your poem.
This painting is about the window and the breeze.
(But no birds and no droplets)
View attachment 32580

Love it

 

[Hope4]

Thank you for the compliments on the poem. It's enjoyable finding an occasional escape into reality.

Yes. . I'm glad you do. And thank you for sharing the fruits of that with us.

 

[YippeeKi YOW !!]

@Howard

@Judee 's ideas are all good ones.

Under HIPAA, we're supposed to be able to get copies of ALL our medical records, regardless. But I'm sure that's been corrupted by state-by-state laws, so who knows.

Your SSDI atty could not only help on this, but could actually force the hspital to release copies of your bill and records in order to support your case in a hearing. I'm not sure if you were able, in the midst of all this, to get a reopen of your case thru under the deadline or not.

But either way, you'll need an atty, and this time it looks, at least to me (and I'm clearly a pop-eyed optimist), like you've got an iron-bound case this time and shouldn't have much difficulty rounding up an enthusiastically opportunistic atty to represent you.

Did the nurse ever come by? I think it's against state and/or fed'l law to withhold necessary treatment and case oversight from a potentially vulnerable patient.

I hope all's well. You've been uncharacteristically silent. A girl worries.

A girl also knows when to back off. At least some girls.