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

[Tammy]

Now I just wonder how I shall stay hydrated at home without having access to an IV.

Do you like coconut water? It's one of the most hydrating liquids there is. Soldiers from ww? used to get coconut water IV's.

 

[Tammy]

I do have the active Epstein-Barr virus, which I think is viral, right?

YES

 

[Howard]

Do you like coconut water? It's one of the most hydrating liquids there is. Soldiers from ww? used to get coconut water IV's.

May not be the same thing, but for the past two months, prior to this happening, I was drinking coconut milk everyday.

 

[Howard]

And since they couldn't come up with a plan to keep me hydrated after sending me home, they were convinced to keep me overnight until they figure something out.

In the meantime, I shall continue compiling possible fixes. Somehow I need to chart, or organize these ideas in my mind a little bit better (I'm a visual person). Possible solutions may exist within this thread.

 

[kangaSue]

They keep trying to give me propinix, it's a PPI, lowers stomach acid, and I keep refusing to take it.

Usual failing of GI's where PPI's are concerned. They should do a 24 hr pH manometry test first to establish that there is an issue of too much stomach acid.

The GI did not report any narrowing whatsoever.

I think I mentioned already that this can be par for the course.

When I had my CT scan about a month ago, the primary purpose was to check for the SMA syndrome (per your suggesting). The local expert was unable to identify this effect. although many of my symptoms did, and still do fit.

In my experience, local experts are very thin on the ground and most doctors are reading the manual to see what to look be looking for as they rarely strike patients with this.
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.

Achalasia won't have anything to do with causing an enlarged stomach as far as I am aware but if there is more widespread dysmotility, it would be worth having a blood draw and send it off to Mayo to run their DYS1 or GID1 antibody panel on it in case it's something such as Autoimmune Gastrointestinal Dysmotility (or Autoimmune Autonomic Ganglionopathy, both are similar things).
https://www.mayocliniclabs.com/test-catalog/Overview/37428

A stomach stimulator known as a GES (gastric electrical stimulator) can be implanted into the stomach. This device is FDA approved for individuals who don’t respond to medications. Studies have shown that in the first year after this surgery, up to 97 percent of people with a GES have less nausea and vomiting and are able to gain weight.

I have one of these implanted. I would seriously question the statistic that it helps with nausea and vomiting in 97% of cases but it certainly works well for me.

 

[andyguitar]

The Serotonin will help muscle contractions @Howard but the downside is that its main component, Tryptophan, can reduce gastric secretions. It seems to me that you need to find a way to trick your stomach into passing fluids in the normal way and the only thing I can think of is to eat foods that have a high water content. 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!

 

[kangaSue]

But no suggestion as to what to do with the problem

The good news is that that is a 15 year old paper and GI motility research has coame a long way since then. The bad news is that they still have no idea what to do about it. A selective vagotomy will improve your liquid but that's a bit babaric in this day and age.emptying

Interesting. So it appears I'm not the only one.

It's the same case even in idiopathic gastroparesis patients without ME/CFS, some people have more of a problem with liquids emptying rather than solids but it's more common to have a problem with solids. However, that may have a lot to with the fact that they don't always test for liquids emptying and I've nebver been assessed for this in having six emptying tests done over the course of 18 years or so.

I assumed I had a problem with liquids because I had trouble keeping any fluids down and always had signs of dehydration in the summer months but that significantly improved with starting a nitrate med in suspecting I wasn't get enough blood flow to the bowel during the digestion period (Chronic Mesenteric Ischemia) and this did pan out to be the case in doing a colonoscopy.

I thought that I had SMA Syndrome or possibly MALS causing an intestinal ischemia problem but all that has been found is Nutcracker Syndrome (NCS). Interestingly, I've come across a few people with NCS who were first diagnosed with CFS, such is the severity of the fatigue issue that NCS can cause.

And I'm assuming I should focus on hydration, rather than eating, so I've got to figure out the right balance.

That's very difficult to do when you have a problem emptying liquids to start with. It can make a huge difference if you can access regular IV fluids but this is almost always very difficult to try get and arranged.

Based on CT scans, and the upper endoscopy, they stated that my stomach is enlarged, which I already knew, because it hangs down to nearly my belly button... possibly because it's always filled with fluids? All that extra weight?

Do they say how enlarged your stomach is? With gastroparesis it is usual for it to be mildly enlarged because the stomach fails to relax as it should and stays expanded all the time so you have impaired gastric accommodation. Nitrates also help with impaired gastric accommodation and another part of why they can help with gastroparesis. Nitrates also relax the pyloric valve so similar to the gastroparesis treatment injecting botox into your pyloric valve.

So how else do we ingest serotonin?

Drug-wise, a low dose of an antidepressant med.

 

[Shoshana]

I wanted to mention, that I wonder if there is concern regarding the bladder and kidneys, in the situation with low fluids intake, @Howard

If so, then perhaps a consult with a hospital Urologist, might be warranted. I know nothing about it, but it came to mind and I thought it worth mentioning. The other body organs that need fluid/hydration, might have resultant effects that should be taken into consideration or addressed in some way.

I also hope that the weekend staff will be much better, than it was last weekend, there at hospital!

 

[Shoshana]

I wonder if your wife could visit with you today, and perhaps she could read over the ideas, in this thread, and help you to chart some of them, @Howard ?

 

[Howard]

@kangaSue or anybody else

I've read everybody's comments, thank you, just thinking out loud here....

Could constant or near-constant gut tension contribute to or cause a failure for the stomach to relax, thus creating favorable conditions for gastroparesis?

You mentioned nitrates relaxing the pyloric sphincter, or maybe the stomach muscles... and considering that I hold all of my tension in my gut...

Note: I meditate and practice mindfulness throughout the day in order to combat this stress or tension. But I easily slip back into this mode when I'm not paying attention or get lost in thought.

Basically, it's a behind-the-scenes tension I'm not aware of unless my mind is quiet.

 

[Jessie 107]

@kangaSue or anybody else

I've read everybody's comments, thank you, just thinking out loud here....

Could constant or near-constant gut tension contribute to or cause a failure for the stomach to relax, thus creating favorable conditions for gastroparesis?

You mentioned nitrates relaxing the pyloric sphincter, or maybe the stomach muscles... and considering that I hold all of my tension in my gut...

Note: I meditate and practice mindfulness throughout the day in order to combat this stress or tension. But I easily slip back into this mode when I'm not paying attention or get lost in thought.

Basically, it's a behind-the-scenes tension I'm not aware of unless my mind is quiet.

Hi Howard,

I really hope things work out for you and that you can get home soon.

, how are you coping with the hospital experience? Have you managed to avoid crashing?

 

[Howard]

I wonder if your wife could visit with you today, and perhaps she could read over the ideas, in this thread, and help you to chart some of them, @Howard ?

Great read.

Grateful as I am for all of the terrific input, my mind is stretching in too many directions. I'm not exactly sure what exactly I should be focusing on. And that's not a complaint, I am encouraged, much more encouraged than I was yesterday.

As I am visual, having my wife document and organize these thoughts in a notebook would be helpful. A large dry erase chalkboard would be even better! ... with life-size diagrams!

 

[Howard]

Hi Howard,

I really hope things work out for you and that you can get home soon.

, how are you coping with the hospital experience? Have you managed to avoid crashing?

Thanks for asking. I'm actually enjoying the interactions I'm having with the staff, and doctors. After not having been out of the house much at all in the past four years, I really have no complaints.

90% of the staff have treated me very well. And my room is kept quiet and peaceful.

 

[Hope4]

@kangaSue or anybody else

I've read everybody's comments, thank you, just thinking out loud here....

Could constant or near-constant gut tension contribute to or cause a failure for the stomach to relax, thus creating favorable conditions for gastroparesis?

You mentioned nitrates relaxing the pyloric sphincter, or maybe the stomach muscles... and considering that I hold all of my tension in my gut...

Note: I meditate and practice mindfulness throughout the day in order to combat this stress or tension. But I easily slip back into this mode when I'm not paying attention or get lost in thought.

Basically, it's a behind-the-scenes tension I'm not aware of unless my mind is quiet.

@Howard, your theory of gut tension makes sense to me, in the presence of another condition, or more, which are stopping things from going where they should.

I don't know enough to search for clues, though.

You posted something about some places inside that are perhaps not sensing that there is liquid there, that needs to be moved along.

Do you notice that in any other way, perhaps not connected to food, liquid, digestion, etc.?

I'm wondering about how neuropathy works (if there is any consistency to it).

For example, with diabetics, there is often a loss of sensation at the end of the big toe, on the medial corner of the end. A dull pressure is often not felt. Increase the pressure, and the rest of the toe feels it, so the person can say "Yes, I feel that." Or a sharp pressure, such as the teeth of a comb, is more easily felt. Merely touching that part of the end of the toe with a finger, and the person might not feel the touch at all.

Or when testing the ends of all the toes, the person cannot easily distinguish each of the toe ends.

Don't know if that gives you an idea.

I am sending you smiles and all best thoughts. God bless you in every way.

 

[Howard]

I'm wondering about how neuropathy works (if there is any consistency to it).

Based on further reading, and what others have mentioned here, it's possible my active Epstein-Barr virus is in play here.

Viruses can cause motility issues with the esophagus and or the stomach and digestive system, apparently. I hadn't realized that.

I do not have any other obvious signs of neuropathy though.

Thank you for your thoughts on the matter

 

[Hope4]

@Howard I am thinking of you and sending you best health thoughts, and smiles and

I wish you healing rest and very nice waking.

And some more flowers for you room.

 

[kangaSue]

Could constant or near-constant gut tension contribute to or cause a failure for the stomach to relax, thus creating favorable conditions for gastroparesis?

I've been told that it's the other way around. Before getting a gastroparesis diagnosis, I also always had that constant feeling of tension in the stomach when I wasn't occupying myself and I couldn't stand to wear any tight clothing. A GI surgeon explained that this was most likely to be gastroparesis and the failure of the stomach to relax and expand to initiate gastric emptying.

I do not have any other obvious signs of neuropathy though.

How about your sweat response, do you think you sweat normally? We are actually very poor judges of that and I though I had a normal response until autonomic sweat testing showed I hardly sweated at all.

Viruses can cause motility issues with the esophagus and or the stomach and digestive system, apparently. I hadn't realized that.

Enterovirus can be a cause of gastroparesis.
https://www.ncbi.nlm.nih.gov/pubmed/27344315

 

[YippeeKi YOW !!]

So how else do we ingest serotonin?

is there anything more effective than the tart cherry juice?

Over 85% of our serotonin is produced in the gut, so the tart cherry juice (or Swanson's Tart Cherry Capsules) would probably be the most actively beneficial and the least disruptive and intrusive path.

The other choice, of course, is any SSRI, but they're freighted with so many unpleasant side-effects and withdrawal difficulties that I would assume they would be a court of last resort. In addition to all that, they work by inhibiting the brain's reuptake of serotonin, and do little or nothing for the gut production.

The EBV virus, while firmly connected to severe gastro issues like Non-Hodgkins Lymphoma, Hodgkins
disease, Burkitt's lymphoma, and gastric and esophageal cancer, is far more rarely connected to the more "benign" gastrointestinal diseases. This, according to a research paper by Paraskevas, Dimitrolopoulos and possibly others. I've misplaced or misfiled the link to that discourse but will continue looking for it, however it deals almost entirely with the aforementioned cancers.

 

[YippeeKi YOW !!]

@Howard

It seems to me that you need to find a way to trick your stomach into passing fluids in the normal way and the only thing I can think of is to eat foods that have a high water content.

@ I know of one. That might be many more. Glucomannan comes to mind as one that might not be problematic. Here is the wikipedia page:

https://en.wikipedia.org/wiki/Glucomannan
It is very popular with some low-carb folks for making puddings, etc.

Slippery Elm bark powder absorbs water very well. It's also nutritious and has been used as a life saving food for underweight people who can't digest anything else.

I think glucomannan merits a closer look and could be an immense help. Ditto @PatJ 's suggestn of Slippery Elm, which also has the benefit of a very strong gastro soothing effect and an excellent nutritional profile. It's also pretty inexpensive.

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.

a jtube possibly wouldn’t help either because the fluids would be pushed back.
Something similar happened to a friend of mine. The jtube caused the exact symptoms why she was originally getting it. She was than getting a port.

Please ask a shite-load of questions about the J tube. I know one of your doctors said that if he was in your position, he would definitely do it, but that's like the BMW salesman saying that if he were you, he would DEFINITELY buy that top-of-the-line model, like, yesterday, and damn the expense.

Be cautious. They make it sound easy and beneficial. It has side effects and hidden trap doors and all sorts of potential unpleasant surprizes. If you absolutely need it, it's a godsend, otherwise .....

Papaya actually made my stomach bleed. Way too strong for me.

If papaya made your stomach bleed, I'd be extremely cautious with another poster's recommendation of HCI. It almost killed DB when he was dealing with issues very similar to yours for several years before we found a resolution/work around, none of which seem ideal for your situation.

 

[Rufous McKinney]

Be cautious

I was liking the chia idea....