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

[Howard]

I've been in the hospital for the past week, undergoing a multitude of tests. They confirmed that I do have gastroparesis, however, the gastric emptying study indicated food does exit my stomach in a reasonable amount of time, while fluid just sits there, not emptying as it should.

The contrast CT scan also confirmed that my stomach is enlarged and full of fluid... while the upper endoscopy confirmed a slight hiatal hernia.

I am currently hospitalized because I am 6 ft tall and weigh 87 lbs, and at the time I was admitted I could not eat or drink at all, due to recent onset of dysphasia (swallowing difficulties). Last week they stretched my esophagus, hoping to resolve that part of the issue. And it hasn't really helped much, if it all.

The gastroparesis symptoms began mid-January, with the stomach filling up, and then fluids backing up through the esophagus.

At this point, the gastroenterologist(s) and neurologist have been unable to identify a case similar to mine, wherein food is digested and passes into the intestines in a timely fashion, and fluids do not.

I am trying to get the medical staff to run a nutritional blood panel, something to determine if I'm lacking in one area or another, but so far they've been unwilling to do so.

Low Vitamin D is at the top of the list of possibilities, also ferritin and the various B vitamins. Each of which has ties to gastroparesis.

https://rarediseases.org/rare-diseases/gastroparesis/

Right now, a feeding tube or a J-Tube are the options on the table, unless they can determine what's causing the issue.

I am so far I'm willing to take any of the gastroparesis medications, based on reports that they have horrendous side effects.


Does anybody have any suggestions? Any similar experiences? Anything I can reference, or presented to the medical staff?

These doctors do seem very willing to help me, they just don't know what to do next.


Thank you for any help you can provide.

 

[Haley]

Unfortunately I have no suggestions @Howard, but I am glad to hear that there are some doctors who are trying to help.

I hope you finally get some answers and treatment that works. I'll keep fingers and toes crossed for you

 

[Hope4]

Hello @Howard I don't have experience or knowledge with this, but am looking on the internet.

Here is a page at the Mayo Clinic about esphageal dysphagia:

https://www.mayoclinic.org/diseases-conditions/dysphagia/symptoms-causes/syc-20372028

Part of the page (can't copy all due to copyright laws):

• Achalasia. When your lower esophageal muscle (sphincter) doesn't relax properly to let food enter your stomach, it may cause you to bring food back up into your throat. Muscles in the wall of your esophagus may be weak as well, a condition that tends to worsen over time.
• Diffuse spasm. This condition produces multiple high-pressure, poorly coordinated contractions of your esophagus, usually after you swallow. Diffuse spasm affects the involuntary muscles in the walls of your lower esophagus.
• Esophageal stricture. A narrowed esophagus (stricture) can trap large pieces of food. Tumors or scar tissue, often caused by gastroesophageal reflux disease (GERD), can cause narrowing.
• Esophageal tumors. Difficulty swallowing tends to get progressively worse when esophageal tumors are present.
• Foreign bodies. Sometimes food or another object can partially block your throat or esophagus. Older adults with dentures and people who have difficulty chewing their food may be more likely to have a piece of food become lodged in the throat or esophagus.
• Esophageal ring. A thin area of narrowing in the lower esophagus can intermittently cause difficulty swallowing solid foods.
• GERD. Damage to esophageal tissues from stomach acid backing up into your esophagus can lead to spasm or scarring and narrowing of your lower esophagus.
• Eosinophilic esophagitis. This condition, which may be related to a food allergy, is caused by an overpopulation of cells called eosinophils in the esophagus.
• Scleroderma. Development of scar-like tissue, causing stiffening and hardening of tissues, can weaken your lower esophageal sphincter, allowing acid to back up into your esophagus and cause frequent heartburn.
• Radiation therapy. This cancer treatment can lead to inflammation and scarring of the esophagus.

Oropharyngeal dysphagia
Certain conditions can weaken your throat muscles, making it difficult to move food from your mouth into your throat and esophagus when you start to swallow. You may choke, gag or cough when you try to swallow or have the sensation of food or fluids going down your windpipe (trachea) or up your nose. This may lead to pneumonia.
Causes of oropharyngeal dysphagia include:

• Neurological disorders. Certain disorders — such as multiple sclerosis, muscular dystrophy and Parkinson's disease — can cause dysphagia.
• Neurological damage. Sudden neurological damage, such as from a stroke or brain or spinal cord injury, can affect your ability to swallow.
• Pharyngoesophageal diverticulum (Zenker's diverticulum). A small pouch that forms and collects food particles in your throat, often just above your esophagus, leads to difficulty swallowing, gurgling sounds, bad breath, and repeated throat clearing or coughing.
• Cancer. Certain cancers and some cancer treatments, such as radiation, can cause difficulty swallowing.

Risk factors
The following are risk factors for dysphagia:

• Aging. Due to natural aging and normal wear and tear on the esophagus and a greater risk of certain conditions, such as stroke or Parkinson's disease, older adults are at higher risk of swallowing difficulties. But, dysphagia isn't considered a normal sign of aging.
• Certain health conditions. People with certain neurological or nervous system disorders are more likely to experience difficulty swallowing.

Here is part of the Mayo Clinic page on treating gastroparesis:

Medications to treat gastroparesis may include:

• Medications to stimulate the stomach muscles. These medications include metoclopramide (Reglan) and erythromycin (Eryc, E.E.S.). Metoclopramide has a risk of serious side effects. Erythromycin may lose its effectiveness over time, and can cause side effects, such as diarrhea.
  A newer medication, domperidone, with fewer side effects, is also available with restricted access.
• Medications to control nausea and vomiting. Drugs that help ease nausea and vomiting include prochlorperazine (Compro) and diphenhydramine (Benadryl, Unisom). A class of medications that includes ondansetron (Zofran) is sometimes used to help nausea and vomiting.

Surgical treatment

Some people with gastroparesis may be unable to tolerate any food or liquids. In these situations, doctors may recommend a feeding tube (jejunostomy tube) be placed in the small intestine. Or doctors may recommend a gastric venting tube to help relieve pressure from gastric contents.
Feeding tubes can be passed through your nose or mouth or directly into your small intestine through your skin. The tube is usually temporary and is only used when gastroparesis is severe or when blood sugar levels can't be controlled by any other method. Some people may require an IV (parenteral) feeding tube that goes directly into a vein in the chest.

Treatments under investigation
Researchers are continuing to investigate new medications to treat gastroparesis.
One example is a new drug in development called relamorelin. The results of a phase 2 clinical trial found the drug could speed up gastric emptying and reduce vomiting. The drug is not yet approved by the Food and Drug Administration (FDA), but a larger clinical trial is currently underway.
A number of new therapies are being tried with the help of endoscopy — a slender tube that's threaded down the esophagus. One procedure used endoscopy to place a small tube (stent) where the stomach connects to the small intestine (duodenum) to keep this connection open.
Several research trials investigated the use of botulinum toxin administered through endoscopy without much success. This treatment is not recommended.
Doctors are also studying the use of a minimally invasive surgical technique when someone needs a feeding tube placed directly into the small intestine (jejunostomy tube).

I will look some more.

 

[Hope4]

Center Watch is a site with listing of clinical trials. I typed in "gastroparesis" in the search box, and found results. If there is a possible treatment that isn't currently offered at the hospital where you are, maybe you could be included in one of the trials, if that would be a help to you.

Here is the link:
https://www.centerwatch.com

"Antidote" is another site of clinical trials. It tries to match you up with the existing trials:
https://www.antidote.me

I got the "Antidote" link from the Gastroparesis Patient Association.

Here is an e-mail address for their Patient Assistance Liaison – Adult: paladult@g-pact.org

I wish I knew enough to ask someone the right questions.

. Smiles and best thoughts to you, @Howard. I am praying God give you health and every happiness.

 

[Wolfcub]

Dear @Howard...I wish I had the experience and/or knowledge to be of any help here.

I am just throwing out an idea based on my imagination, but have no idea how practical or real any solution may be.

If there's a puddle of water on the floor, how do we get rid of it?
We use a sponge to soak it up.

So just my wacky imagination....please bear with me if you haven't passed out already in a trance....

I wonder if there is some substance which is consumable, which absorbs the liquid, and becomes almost-solid....but enough for the stomach to process it?

 

[Hope4]

@Wolfcub 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.

 

[Wolfcub]

Yes that's interesting @Hope4 That chewy Turkish ice cream sounds intriguing
But the "health risks" paragraph ..."The risk includes choking and/or blockage of the throat, esophagus or intestine, according to international adverse reaction case reports. It is also important to note that these products should not be taken immediately before going to bed ..."
May mean it wouldn't be good if someone had oesophageal stricture or dysphagia (?)

But I wonder if the basic idea could be run past the doctors?

 

[i-lava-u]

Have they tested you for Achalasia? I had never heard of this before, but was reading about gastroparesis and came across it.

It is another motility disorder but can cause digestive issues of both food and liquids. From what I read, it is a rare disease so not all doctors would know to test for it. I could be WAY off, just an idea . Here are a couple of links.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3329145/
https://rarediseases.org/rare-diseases/achalasia/
https://www.iffgd.org/upper-gi-disorders/achalasia.html
-----

Another thought....

Could it be that your body is producing too much or not enough of something in digestive system causing an imbalance (like PH imbalance etc.)? Or maybe a dysfunction of the organ(s) itself (like the lower part of the stomach not working properly in its function)? Have they tested for digestive hormone levels etc?

Detailed but basic digestion process links below.....maybe something will jump out at you here?

https://www.innerbody.com/image/dige02.html
https://www.iffgd.org/manage-your-health/the-digestive-system.html


---
@Howard, I was up late last night when I wrote this, in zoning out land. I hope it makes sense...I am glad the doctors are willing to keep looking for ways to help you!

 

[kangaSue]

Johns Hopkins has a very good paper on gastroparesis
https://www.hopkinsmedicine.org/gas...ogy/_pdfs/esophagus_stomach/gastroparesis.pdf

Was there any narrowing of your duodenum seen in your CT scan, or did anyone mention there was some difficulty getting the endoscope through the duodenum (assuming they went as far as the jejunum)?

A scan won't always show a narrowing though (can depend on your positioning for the scan) and it can take doing a Barium Swallow test with Small Bowel Follow Through to see it if it's there. Even then, the barium test may have to also be done while standing to see it.

What I am getting at here is that this could be SMA Syndrome, where the superior mesentery artery compresses the duodenum, which can cause a reversed peristalsis causing the stomach to enlarge and can affect motility in the esophagus.

This usually goes with having an asthenic body type such as yours. There are other reasons for your symptoms though and I have had a similar thing happen from having Chronic Mesenteric Ischemia, which has had a habit of randomly shutting down my GI system on occasion, and I have severe gastroparesis probably as a result of the chronic gut ischemia (symptoms can be the same for either thing). SMAS can be a cause of gut ischemia too though.

 

[Malea]

I wonder if the fluids doesn’t empty because they are heavier than food.

I would think that a feeding tube wouldn’t resolve anything because fluids would still go into the stomach and wouldn’t empty.. So the j-tube could be the better option.

If this would be true

What I am getting at here is that this could be SMA Syndrome, where the superior mesentery artery compresses the duodenum, which can cause a reversed peristalsis causing the stomach to enlarge and can affect motility in the esophagus.

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.

I am trying to get the medical staff to run a nutritional blood panel, something to determine if I'm lacking in one area or another, but so far they've been unwilling to do so.

If I remember it right lack of B12 is also considered to be a big cause of stomach-dysmotility.

 

[Plum]

@Howard I have Gastroparesis and Eosinophilic Esophagitis. When my GP is bad I cannot keep water down. It will sit in my stomach for ages and I often regurgitate it back up very easily. IF however I drink something like tea with milk and sugar this tends to eventually pass through. It seems if my body has to digest something in the liquid then it will finally pass through. Similar happens when I take meds - If they're on their own with a bit of water they just sit there but if I have them with a meal then they get digested and will then work.

I would suggest joining 1 of the GP groups on FB and asking if anyone else experiences this. I have not come across anyone else with only liquid issues but are fine with food. My basic understanding of how we absorb liquids vs food would suggest that your issue is with your stomach lining and absorption not working through the cells there.

 

[PatJ]

I wonder if there is some substance which is consumable, which absorbs the liquid, and becomes almost-solid....but enough for the stomach to process it?

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. It doesn't become almost solid but is very good at becoming a firm gel depending on how much water is added. Maybe if enough water (hot water works best) was added to make it easy to swallow then it would get into the stomach and continue to absorb the water found there.


Sites with user suggested remedies for gastroparesis include EarthClinic, and CureZone

And here are some comments from others that I've gathered:

Gastroparesis as a probiotic side effect: "I took a bacillus subtilis supplement which resulted in slow motility constipation and delayed stomach emptying." (From a comment on CureZone)

Iberogast, trickled, from kangaSue on PR:
Someone was telling me that they cured their gastroparesis with Iberogast but didn't tolerate it initially so started with just one drop per day for a week then 1 drop twice a day for a week then 1 drop 3 x a day for a week and then continued to add one drop to the total 3 x a day each week until built up to the full dose of 20 drops per time.

Gastroparesis from bezoar, from a comment on EarthClinic:
[Bezoar] is a mass of undigestable fiber stuck in your stomach and makes you feel full even you eat little and it sits there… you have to use high dose cellulase to dissolve cellulose from the fiber.

Iberogast, trickled, from kangaSue on PR:
Someone was telling me that they cured their gastroparesis with Iberogast but didn't tolerate it initially so started with just one drop per day for a week then 1 drop twice a day for a week then 1 drop 3 x a day for a week and then continued to add one drop to the total 3 x a day each week until built up to the full dose of 20 drops per time.

 

[Shoshana]

I wondered if activated charcoal
could do that sponge-like idea, mentioned above, more safely?

My mainstream GP, years ago, told me they use it for toddlers at the hospital, in the ER, when they swallow liquids not meant for human consumption, so she had told me it was very safe for me to take, which had surprised me at the time, as it's an over the counter supplement.
Also, though, the hospital staff might be familiar with it, due to that other use for it.

Just an idea. I have no idea what needs to be done, but i hope something VERY helpful for you, wil be figured out, @Howard !

 

[Wolfcub]

I was thinking kind of on the lines of a gradual and gentle effect forming very small "boluses" of something solid-enoughto trick the stomach into processing it, but which would absorb the fluid gradually, a little at a time.

Some moisture-binding things may just create a large mass, which would presumably be uncomfortable to process.

 

[Howard]

Thank you for all of the replies and ideas! It'll take me a little bit to process the information, but a lot of good and relevant information here... many things I hadn't considered.

 

[kangaSue]

I would think that a feeding tube wouldn’t resolve anything because fluids would still go into the stomach and wouldn’t empty.. So the j-tube could be the better option.

It's pointless to place just an NG feeding tube for any cause of gastroparesis. A tube needs to be advanced to the jejunum for best results but some of the "medical experts" will only place the tube into the duodenum where the end of the tube can easily flip back on itself and enteral formula can reflux back to the stomach.

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.

The tube flipping can still be a major problem for some people even when the tube is placed into the jejunum though. I actually have an open stoma directly into the jejunum so my tube is removable. This is a major surgery, in a similar vein to a colostomy. The alternative solution that my surgeon changed to doing for other gastroparesis patients is something called a Witzel Tunnel Feeding Jejunostomy and I would look into doing that before getting a port done for TPN.
Where feeding tubes are concerned though, it's best to do a trial of an NJ tube first to see if you are going to tolerate any of the enteral feeding formula's and too at what rate flow rate you can handle.

If I remember it right lack of B12 is also considered to be a big cause of stomach-dysmotility.

I'd check both vitamin B12 and vitamin D, both contribute to GI motility function (vitamin D in something of a roundabout way though).

 

[kangaSue]

I would suggest joining 1 of the GP groups on FB and asking if anyone else experiences this.

I fit that bill.

I have not come across anyone else with only liquid issues but are fine with food.

There is one Australian study around specifically into people who have gastroparesis-like problems with ME/CFS. They found that liquids emptying was a greater problem than solids emptying.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC544348/

 

[Howard]

Have they tested you for Achalasia? I had never heard of this before, but was reading about gastroparesis and came across it.

It is another motility disorder but can cause digestive issues of both food and liquids. From what I read, it is a rare disease so not all doctors would know to test for it. I could be WAY off, just an idea . Here are a couple of links.

That's a good one, because the gastroenterologist is considering a dysmotility problem of the stomach and the esophagus as well. That's why he was focusing on the different barium related swallow tests. Expecting the final results tomorrow.

Could it be that your body is producing too much or not enough of something in digestive system causing an imbalance (like PH imbalance etc.)?

I've been having difficulties digesting proteins since I've been in the hospital, and have been considering low stomach acid as the primary cause, so I ingested my protein tonight with pickle juice and relish, hoping to increase my stomach acid.

I successfully ate 2.5 oz of Gerber's turkey baby food. Some minor nausea, and a tiny bit of bloating, so then I just ate more relish to offset. Making the best out of what they have in the cafeteria here.

The previous several nights I'd been much worse off, terrible nausea and bloating.

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

Was there any narrowing of your duodenum seen in your CT scan, or did anyone mention there was some difficulty getting the endoscope through the duodenum (assuming they went as far as the jejunum)?

The GI did not report any narrowing whatsoever.

What I am getting at here is that this could be SMA Syndrome, where the superior mesentery artery compresses the duodenum, which can cause a reversed peristalsis causing the stomach to enlarge and can affect motility in the esophagus.

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.

 

[Howard]

I wonder if the fluids doesn’t empty because they are heavier than food.

For some reason I don't think my mouth, down to my stomach are recognizing the fluids very well.

I sensed a disconnect even before the gastric emptying study concluded much the same, that food is fine and fluids do not empty.

It seems if my body has to digest something in the liquid then it will finally pass through.

This is almost the same with me. When I was drinking hot ginger lemon tea with added Ginger and lemon, I was having less problem swallowing. The emptying was the same, but my sphincters within the esophagus chain we're more readily opening and I was having less difficulty swallowing.

I'm sure the heat of the fluid also helped with recognition.

I seem to gag on plain water, it's almost as if my body doesn't acknowledge it's in my mouth and it's being swallowed.

And here are some comments from others that I've gathered:

Very interesting commentary. So many possible reasons or outcomes.

 

[Hufsamor]

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. The device may also improve life expectancy related to gastroparesis.

Not for now, but if every other possibility fails?