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

[jesse's mom]

Another possibility would be black chia seeds, which will absorb an absolute ton of water and form a sort of semi-solid liquidy gelled state that would transport water in a form that might trick your stomach into accepting and absorbing it. It's easy to swallow and not unpleasant, and carries a solid nutritional profile as well.

I ate these for a while and did not know why they made my stomach feel so good! Now I remember and this is a great idea!

Please ask a shite-load of questions about the J tube.

Especially as it is so hard for you to get out and have the maintenance for a J tube. That is my main concern.

I am so happy you are getting help!

 

[Shoshana]

I've been thinking of you, yesterday and today. Hoping things are going alright with you, @Howard

 

[jesse's mom]

Something else that might help a bit is to raise the head end of your bed a few inches and get gravity on your side!

And there is an idea that I have not heard of in your case so far... Might be worth a try!

 

[YippeeKi YOW !!]

And there is an idea that I have not heard of in your case so far... Might be worth a try!

@Howard
Especially right now, when you have an electronically controlled hospital bed and can test this out without a whole lot of hassle. Maybe give it a try while you have this option, yes?

 

[YippeeKi YOW !!]

I ate these for a while and did not know why they made my stomach feel so good! Now I remember and this is a great idea!

Chia seeds (go for black chia) are also loaded with Omega 3's, which are usually deeply deficient in most Western (and other) diets, which have an emphasis on Omega 6.

 

[i-lava-u]

Hmm, this got me thinking...
"...raise the head end of your bed" as @andyguitar pointed out

Might be worth a try

The head of my bed is elevated, as this helps with POTS (although I do remember it made me feel worse for a few weeks until my body got used to it)

I wonder if part of the digestive issues are, in part, related to your dysautonomia? Since the autonomic nervous system controls all "automatic" functions, such as digestion....and POTS wreaks havoc on all of it....

There are a combination of things that I do to help with POTS in the form of lifestyle and medications. The one thing that has helped the most is Mestonin (pyridostigmine). I started thinking about HOW and WHY this medication helps. Mestonin is usually prescribed for Myasthenia Gravis, but for some reason it also helps some people with POTS

For me anyway, one of the things Mestonin has helped me with is digestion

The main component? (is that the right word) of this drug is Acetylcholine.
https://en.wikipedia.org/wiki/Acetylcholine
https://en.wikipedia.org/wiki/Pyridostigmine

Thinking of you @Howard ....just throwing out ideas, with the hopes that hopefully, you will get some kind of an answer soon

 

[andyguitar]

Mestonin sounds interesting.

 

[andyguitar]

Just something very simple for you @Howard in case you dont know. Most water is absorbed in the small intestine.

 

[i-lava-u]

Another thought @Howard ....somewhat connected to the previous thought. Do you happen to have joint hypermobility (EDS)? (Mestonin is also used for some people with EDS)

I have this, and some people that have ME and POTS also have EDS....they are friends that like to hang out with each other (MCAS is another one)

EDS can also cause a lot of issues, one of which, in some people, is digestive motility issues.

 

[YippeeKi YOW !!]

@Howard, @andyguitar

Most water is absorbed in the small intestine.

...... which would be great info, except that Howard's problem is that the water just sits in his stomach and doesn;t move into the small intestine, altho solid foods process normally.

We're trying to find ways to trick water into moving further down the pipeline by turning it into a semi-solid, so that it processes like a solid food.

 

[YippeeKi YOW !!]

The main component? (is that the right word) of this drug is Acetylcholine.

@Howard, @i-lava-u
Acetylcholine isn't a component of Mestonin (pyridostigmine), but it is the focus of Mestonin;s action: Mestonin functions as an cholinesterase inhibitor, which means that it increases the amount of acetylcholine by destroying cholinesterase which destroys acetylcholine, thereby making more acetylcholine available to the body/brain for a longer period of time, and in greater quantities.

One of acetylcholine's functions is muscle contraction, which is a problem particularly in MG. It's been found to be helpful for ME/CFS and EDS as well for the same reasons.

 

[Howard]

Reglan, Gastric Emptying, Chronic EBV, and Gratitude

They gave me a small dose Reglan yesterday, in trying to determine if it would have a positive effect upon stomach emptying by increasing stomach contractions.

It may have done so, but it was difficult for me to determine with any certainty, due to the immediate side effects.

Blurred vision for the first 45 minutes after taking 2.5 mg.

Generalized confusion and inability to form and speak complete sentences without laboring.

Felt relaxed and sleepy after an hour's time. Plus, something may have been going on in my intestines, but I couldn't figure it out through the fogginess.

The side effects dissipated after three hours.

I was willing to try it again today, but the surgeon and doctor both agreed I should stop taking the medication immediately.

Instead, we're going to try to get our hands on some dromperidone, a medication only available in Canada. This medication functions the same, but it doesn't have the severe side effects because it doesn't cross the blood-brain barrier.

Emptying

Also, for our gastric emptying study will take place tomorrow. They are trying to determine what amount of fluid is emptying after four hours, rather than relying upon and extrapolating from the two-hour study they did last week.

One of the main reasons why they are holding off on the J tube placement, is that they are concerned about my neutropenia, and therefore my vulnerability to infection.

EBV

At least at this point, the doctors and surgeons all agree my chronic and active Epstein-Barr virus is likely the cause for my low white blood cell count, and possibly my immune dysfunction.

I am asking that they run and EBV blood panel to help determine if this may indeed be the cause for my sudden esophageal and gastric emptying problems. Basically, I'm wondering if my score increased from the 600's, and perhaps may have shot through the roof.

What they don't seem to know, and I don't seem to know either, is if the numerical value has any bearing on my physical well-being. They are attempting to make that determination before pursuing any course of action.

THX

Thanks again to each of you for your commentary, I'm still catching up, and I still need to organize my thoughts, but the advice and recommendations seems as though they will be quite useful.

And interestingly enough, they are keeping me quite busy here… doctors, nurses and specialists parading in and out of my room.

They are highly motivated, expressing that I shouldn't have to live this way, and especially not for as long as I have.

Even if they don't solve the problem, or problems, I'm deeply appreciative of all their efforts, as well as yours too!

 

[jesse's mom]

One of the main reasons why they are holding off on the J tube placement, is that they are concerned about my neutropenia, and therefore my vulnerability to infection.

I am so pleased that they are so thorough! They seem to be communicating with each other and that is a small miracle in itself! Hooray!

They are highly motivated, expressing that I shouldn't have to live this way, and especially not for as long as I have.

Amen and I second that! I am so glad for you! This is looking so very hopeful! Thanks for keeping us on the loop!

 

[YippeeKi YOW !!]

They are highly motivated, expressing that I shouldn't have to live this way, and especially not for as long as I have.

@Howard
This is really great, and such a wide divergence form what you (and so many others) have experienced when seeking help from the medical community .....I'm relieved and deliriously happy for this unexpected blessing.

This would be a good time to get ahold of your social worker there, or have your LPW do that if you're not up to it right now, and really push for help on reopening your SSDI (tick tock, tick tock), while your medical team has you firmly in memory and mind. I don;t see how they a turn you down this time, but then, the bureaucratic mind has always been a mysterious world unto itself.

 

[i-lava-u]

Mestonin functions as an cholinesterase inhibitor, which means that it increases the amount of acetylcholine by destroying cholinesterase which destroys acetylcholine, thereby making more acetylcholine available to the body/brain for a longer period of time, and in greater quantities.

One of acetylcholine's functions is muscle contraction

Thanks for stating that more clearly! my brain is like a jumbled ball of yarn much of the time, and i often find it hard to articulate Yay for teamwork!

 

[Shoshana]

I wanted to mention again, that I would ask them, @Howard
if you should be checked on other body organs, such as bladder and kidneys, for any bad effects that should be addressed as well, which may be resulting from the low hydration issues.

I am glad for your update above! Thanks for sharing.

 

[Howard]

I wanted to mention again, that I would ask them, @Howard
if you should be checked on other body organs, such as bladder and kidneys, for any bad effects that should be addressed as well, which may be resulting from the low hydration issues.

I am glad for your update above! Thanks for sharing.

Thank you for reminding me. I have asked them this, and according to the CT scans, the blood work and urine samples, they are not seeing any functional problems relating to my constant dehydration or lack of gastric emptying.

Admittedly, I have no idea how long-standing dehydration affects the human body, however I shall, ask again.

 

[Wolfcub]

https://clinicaltrials.gov/ct2/show/NCT03120325

Here is a ongoing trial,
to see if stimulating the vagus nerve can help people with gastroparesis ...

It's interesting you hit on the vagus nerve idea, and trials @Hufsamor I was just wondering about vagal tone and its connection with gastroparesis

 

[Wolfcub]

And interestingly enough, they are keeping me quite busy here… doctors, nurses and specialists parading in and out of my room.

They are highly motivated, expressing that I shouldn't have to live this way, and especially not for as long as I have.

Even if they don't solve the problem, or problems, I'm deeply appreciative of all their efforts, as well as yours too!

I am very glad to hear this @Howard

 

[Wolfcub]

This would be a good time to get ahold of your social worker there, or have your LPW do that if you're not up to it right now, and really push for help on reopening your SSDI tick tock, tick tock), while your medical team has your firmly in memory and mind. I don;t see how they a turn you down this time, but then, the bureaucratic mind has always been a mysterious world unto itself.

That is a very good idea @YippeeKi YOW !!