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

[Howard]

What I don’t get... if it is the proximal stomach that would be responsible for digesting the fluids, why does the problem already start with swallowing them.

My stomach retaining fluid began during second week of January.

The swallowing issues only began three weeks ago. And perhaps not coincidentally, hours after having ingested gluten... which I've mostly avoided since 2001.

I read that it may take up to two weeks for the inflammation in the esophagus to reduce... if indeed that was the cause for my swallowing issues.

Today I was able to swallow some ground chicken. And yesterday I had two hard boiled eggs, although they may have been responsible for bloating and stomach pain after the fact.. once after breakfast, and once after lunch.

I wonder how you did with taking in wet foods, @Howard
like the applesauce, you had there, to add liquids and hydration, without adding more than tolerated of the clear liquids?

They kept me off of fluids over the weekend to see how hydrated I would be ingesting applesauce, and other baby foods, the things I regularly eat at home.

While I didn't become horribly dehydrated in the forty hours without my IV running, the color of my urine indicated a need for supplemental hydration.

A viral infection can mess up your nerve signals,
and it can effect stomach, your throat (and give you swallowing problems) or both.

I did discuss my chronic Epstein-Barr virus with the doctors and surgeons, and they will speak with an infectious disease specialist in regards to the viral infection possibly having negative impact, being the probable cause for the dysmotility.

They agreed that the chronic Epstein-Barr maybe what's causing my neutropenia, which I suggested may also be the cause of my long-standing CFS in the first place.

So I am trying to get them to run the EVB panel. Perhaps if my number is increased substantially that would be a key indicator, before I was around 600 or 640.

The giveaway sign if you have this is almost always having a much reduced angle at the junction of the sma and aorta (but they need contrast to see it CT Angiogram) and a close distance of the sma to the aorta where the duodenum passes between both. It's not difficult to see these for yourself if you have the imaging.

I'll see if I can gain access to the CT image. I haven't been able to talk to my personal GI in a couple of weeks, but I'll see what the surgeons say.

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!

That's a good idea, but I've been sleeping in a generally upright position for the past couple of years to keep the heart palpitations at bay. And then, since January, I've been sleeping pretty much upright, almost at a 90 degree angle. Gravity is no match for me!

 

[kangaSue]

It's very common with Reglan that if you have problems with the first dose, you will always have problems with it.

Here's a list of other prokinetic drugs that have been used for gastroparesis;
http://www.digestivedistress.com/motility-rx

Prucalopride is a recent release into the US market. Contrary to popular belief among doctors, cisapride is still available in the USA, but only available under compassionate-release programs.

Mosapride was a med that compounding pharmacies could make up for you but it was receiving some scrutiny from the FDA and I'm not sure what the outcome was for this med (we can get it compounded still here in Australia).

inhousepharmacy.vu is a reliable online source for domperidone. They have an orally dissolving form of it (Domperon) that some people find has much better efficacy for them than swallowed tablets.
https://www.inhousepharmacy.vu/search.aspx?searchterm=domperidone

 

[YippeeKi YOW !!]

my brain is like a jumbled ball of yarn much of the time

@i-lava-u
I soooooo hear that. It's really frustrating when you're trying to express a moderately, barely complex thought about something you thought you were pretty conversant in, and it's like trying to tell someone about a dream you had: the more you reach for the pieces, the faster they turn into mist.

It took me 5 tries to put together that post about Mestonin and cholinesterase so that it was relatively clear, and thank you for letting me know that apparently it was.

 

[sb4]

@Howard Glad you have doctors that actually believe you and want to help fix you. You have needed this for a long time.

 

[Judee]

So I am trying to get them to run the EVB panel. Perhaps if my number is increased substantially that would be a key indicator, before I was around 600 or 640.

I hope you can talk them into doing this for you.

 

[jesse's mom]

Thinking of you today @Howard

 

[YippeeKi YOW !!]

Thinking of you today @Howard

@Howard
Me too. How's it going?

So I am trying to get them to run the EVB panel. Perhaps if my number is increased substantially that would be a key indicator, before I was around 600 or 640.

Have you been able to get another EBV panel? It seems that it should be important to them to establish what your current status is.

Anxious to hear from you, whenever you can. I know this has been a long and hard haul.

 

[Howard]

They just told me I'm having surgery tomorrow for the J tube placement. It's going to be far enough away from my stomach as not to "backup" … but they didn't give me many details, besides being 40 millimeters away from the stomach.

And the details wouldn't do me much good, because I'm not familiar with this procedure and I don't feel like doing copious amounts of research that will do me absolutely no good whatsoever.

I trust these people. And I am letting go.

My 4-hour gastric emptying test didn't pan out yesterday, cutting off at 90 minutes for some reason, technical difficulties or something. Not sure how that factors into their decision, but as of now, that no longer matters… fluid still not emptying at a reasonable rate.

And lastly, and possibly a factor in their decision-making, my white blood cell count is all the way up to 2.3, as of this morning, which is a substantial improvement overall.

I'm still pushing on the EBV blood work, although they remain unconvinced in the utility of doing that panel. And I'm not quite sure either, outside of being a label to affix to my illness.


Thanks and appreciation to each of you!

 

[Shoshana]

Very good to read your update, @Howard

We will all be hoping and praying and rooting for you!

 

[Hope4]

Very good to read your update, @Howard

We will all be hoping and praying and rooting for you!

Yes, hoping and praying for all to go very well. . God bless you wonderfully in every way, and all those at the hospital. Smiles and to you.

 

[sunshine44]

very good news Howard. Too bad you've been through the ringer to get here but it will help you out immensely it sounds until this issue resolves more.

And great news about your wbc. woo-hoo.

You are in good hands and you've got this!

Now start planning what you are going to do with all of your time you spent trying to get fluids and solids in you all day for at least the past 4 months

Sending you and your wife lots of love and light

 

[Wolfcub]

@Howard I am thinking of you and wishing you all the very best for tomorrow. Kind thoughts for you both from me

 

[Haley]

@Howard Glad to hear the progress. I'll keep everything crossed that it all goes well

 

[jesse's mom]

OH @Howard best of luck tomorrow! Let Go and Live Brother!

 

[YippeeKi YOW !!]

@Howard
They'll probably fill you in on maintenance, care, etc after you've had a chance to rest up from the procedure, which I know will go well.

Thank you, sweetie, for taking the time and the effort to keep us posted.

It's what the Dr ordered, and it'll do the trick. You'll be up and running in no time, and all my best everything is with you now, as always. But you already know that.

 

[jesse's mom]

Keeping you in my thoughts for this night to be restful and for tomorrow to be easy and problem free.

 

[kangaSue]

They just told me I'm having surgery tomorrow for the J tube placement.

Would be good if they could take some biopsies while they are at it to get samples to be tested for enterovirus.

 

[Jessie 107]

Good luck Howard, we are all wishing you well.
God bless.

 

[andyguitar]

Getting a good amount of nutrition from the J-Tube will make a difference @Howard ,build you up a bit. I expect your health will improve quite rapidly now.

 

[Shoshana]

We're all in your corner, today, @Howard !