Diagnosis: motility disorder duodenum and gaping pylorus

[FromHolland]

Hi,

Recently, I have been diagnosed with a dysfunctional duodenum and pylorus, caused by an unknown pathogen. My duodenum doesn't contract normally, i.e., low and infrequent motility. Also, the exit muscle of my stomach (pylorus) was open and didn't close at all during the 45 min examination according to the specialist who did the test. The method used by the examiner was ultrasound technique.

The symptoms that led my specialist to examine this include:
> Intense abdominal pain (epigastric area/RUQ), piercing to the back, almost immediately after eating/drinking and even with small amounts
> Feeling full after a few bites
> Nausea, 30-60 min after eating and in the morning when waking up
> Undigested food in stool

I'm also experiencing very vague pain sensations, radiating from my abdomen to hand and feet (i.e., burning, tingling, etc.) during these pain attacks.

I was put on a prokinetic drug by my doc (erythromycin) two weeks ago with 200mg dosage 3x a day, but it didn't have any improvements and also caused a few side effects. I'm now looking into other treatment options.

Does anyone recognise this condition and/or the symptoms? Also, any experiences with other (natural) prokinetics that can help improve digestion and motility?

Thanks!

 

[kangaSue]

Erythromycin is typically used for gastroparesis (delayed gastric emptying) but if your pylorus is getting stuck open, one would expect that you would have Dumping Syndrome (rapid gastric emptying) and this could account for the undigested food in your stool.

An open pylorus can also allow bile to reflux back into the stomach and this can be a source of epigastric pain.

I think you're going to need further testing done to see what's doing what though, an endoscopy, Gastric Emptying Scintigraphy, Barium Swallow test, abdominal CT (a CT Angiogram would cover more bases).

Iberogast is a herbal prokinetic that can be effective for some people.

 

[FromHolland]

Interesting... I've read about the condition a few times, but never considered it seriously tbh since Dumping Syndrome is often the result of gastric surgery in about 80-90% of the cases. Idiopathic or post-viral DS is possible though. I've been tested positive for Coxsackie B in the past, which is very likely also the cause of my CFS (-like symptoms), so this might as well be the cause for DS if I happen to have it.

Doesn't Iberogast stimulate MMC phase 3 in the same way that all other prokinetica work and therefore worsen/contribute to the DS symptoms?

 

[kangaSue]

Dumping Syndrome can be an issue in gastroparesis too, for various reasons. Impaired gastric accommodation occurs in around 85% of cases of both gastroparesis and Functional Dyspepsia so food dropping rapidly to the bottom of the stomach immediately after ingestion could be a cause of Dumping Syndrome as well if the pylorus is stuck open.

A recent paper suggests that the premature distribution of food within the stomach can be visualised with a standard Gastric Emptying Scintigraphy test.
https://www.tandfonline.com/doi/abs/10.1080/00365521.2019.1710244

The dumping side of things can also then be due to too large particles of food not being absorbed well in the small bowel. Taking pancreatic enzymes to kickstart the breakdown process of food while it is in the stomach can slow down "dumping" in this situation.

Prokinetics may not be a good option for you and I only mentioned Iberogast because you asked about a natural alternative. GI dysmotility tends to be a very complicated area involving vagus nerve inputs and it could just be a serotonin imbalance issue at play and may respond to something like taking a low dose antidepressant. Trial and error is often the only way to narrow down the field to get to a cause.

 

[FromHolland]

Dumping Syndrome can be an issue in gastroparesis too, for various reasons. Impaired gastric accommodation occurs in around 85% of cases of both gastroparesis and Functional Dyspepsia so food dropping rapidly to the bottom of the stomach immediately after ingestion could be a cause of Dumping Syndrome as well if the pylorus is stuck open.

A recent paper suggests that the premature distribution of food within the stomach can be visualised with a standard Gastric Emptying Scintigraphy test.
https://www.tandfonline.com/doi/abs/10.1080/00365521.2019.1710244

The dumping side of things can also then be due to too large particles of food not being absorbed well in the small bowel. Taking pancreatic enzymes to kickstart the breakdown process of food while it is in the stomach can slow down "dumping" in this situation.

I proposed the Gastric Emptying Scintigraphy test to my doctor the other day and he told me it's a good suggestion and something he hasn't considered yet, so he told me he will order the test soon. I also proposed to do the combined liquid and solid food test, instead of only one, since a combined test is more sensitive for detecting disturbed motor activity in the upper GI tract.

There's some more background story to my symptoms, which I like to share. Three years ago, I was diagnosed with SMA syndrome based on findings from a CTA scan, but the diagnosis was disconfirmed by 4 doctors that I consulted for 2nd opinion. After I continued to experience severe abdominal pain and other GI symptoms, I decided to visit Prof Scholbach in Germany since he is an expert in this area. During the visit 3 years ago he told me that there is a clamp/narrowing, but that food and water is able to pass the clamp in small quantities. After the examination he also told me that my duodenum and pyloric valve are showing odd motility behaviour and are dysfuctional, likely the result of a current or former infection.

A couple of weeks ago I went for a follow-up, and this time prof Scholbach told me that my duodenum is showing no movement at all, at least not during the 45 min examination... and also that my pylorus was open all the time. During the test he asked me to drink some water and while examining the ultrasound images he noticed that after intake water almost immediately dropped to my duodenum, stayed there for a while and then flowed back into my stomach.

A few days before my visit to prof Scholbach, I had a 2nd CTA scan which showed that I meet the technical criteria for SMA syndrome:

> SMA-Aorta distance -> 5-7 mm (normal: 10-35 mm)
> Angle SMA aorta -> 20-25 degrees (normal > 35 degrees)

This leads me to the following theories:
A) The clamp is a normal anatomical feature I have, but combined with the disturbed peristalsis and motor activity in my stomach and duodenum (likely caused by an infection or damaged VG nerve) this is causing my GI symptoms, OR
B) Chronic narrowing has caused reversed peristalsis in my duodenum, which in turn has affected the motor activity in my stomach and is the cause of my GI symptoms

I'm leaning slightly more to the first, since when I developed the symptoms my BMI was 28, which is on the obese side, I'm a male and, although I experience nausea, I've never vomited, which I believe is a hallmark symptoms of SMA syndrome.

Prokinetics may not be a good option for you and I only mentioned Iberogast because you asked about a natural alternative. GI dysmotility tends to be a very complicated area involving vagus nerve inputs and it could just be a serotonin imbalance issue at play and may respond to something like taking a low dose antidepressant. Trial and error is often the only way to narrow down the field to get to a cause.

I know you did, I was just checking to be sure I'm now using Pharma Gaba to try to calm my nerves and see if it has effect on my visceral hypersensitivity and improve VG nerve function.

 

[kangaSue]

I also proposed to do the combined liquid and solid food test, instead of only one, since a combined test is more sensitive for detecting disturbed motor activity in the upper GI tract.

Very good idea to do a combined test. Too often the test is just for solids but with ME/CFS in particular, liquids emptying can be more impaired than solids.

There's some more background story to my symptoms, which I like to share. Three years ago, I was diagnosed with SMA syndrome based on findings from a CTA scan

I'm very familiar with Prof Scholbach and his expertise in this area. Many of his peers are sceptical of his findings using his enhanced ultrasound methods unfortunately. Having an SMA-aorta distance less than 8mm and reduced aortomesenteric angle usually means that it is invariably SMAS and sometimes, that's only fully apparent (duodenum compression) in doing upright imaging.

Prof Scholbach suggesting that you have odd duodenum motility even for SMAS makes me wonder if you might actually have CIPO (Chronic intestinal pseudo obstruction) instead of, or maybe even as well as SMAS. Did he say if the left renal vein was narrowed too (Nutcracker Syndrome)? It's often the case along with having SMAS, either one though can be a cause of chronic fatigue and autonomic dysfunction. It's not really known what causes the autonomic dysfunction with these syndromes but I think it's likely that inflammation in the celiac plexus also compresses the vagus nerve.

although I experience nausea, I've never vomited, which I believe is a hallmark symptoms of SMA syndrome.

Vomiting is not always present with SMAS. It can depend on the degree of duodenal narrowing.

I'm now using Pharma Gaba to try to calm my nerves and see if it has effect on my visceral hypersensitivity and improve VG nerve function.

I have Nutcracker Sydrome and severe gastroparesis. The thing I find that helps the most for my visceral hypersensitivity is a nitrate medication (nicorandil, but glyceryl trinitrate patches or delayed release isosorbide tablets work too). Works in part by improving your gastric accommodation, but can also relax the pyloric valve too which might not be such a good idea for you. Then again, maybe that's what's needed to get it operating better again.

 

[FromHolland]

Did he say if the left renal vein was narrowed too (Nutcracker Syndrome)? It's often the case along with having SMAS, either one though can be a cause of chronic fatigue and autonomic dysfunction. It's not really known what causes the autonomic dysfunction with these syndromes but I think it's likely that inflammation in the celiac plexus also compresses the vagus nerve.

Yup, he said that I have NC syndrome, but he also diagnosed me with a bunch of other syndromes (at least 5) and during the examination he was saying 'you may have this' and 'you might have this' repeatedly, so I believe he's not 100% sure either.

Prof Scholbach suggesting that you have odd duodenum motility even for SMAS makes me wonder if you might actually have CIPO (Chronic intestinal pseudo obstruction) instead of, or maybe even as well as SMAS

How does one test for this?

After the examination Prof S told me that the cause of such a disturbed motor activity might also be due to a condition called MNGIE, which I read is an inherited disease (autosomal recessive). How big are the chances that I have an inherited disease, which is autosomal recessive, with no prior history, no other symptoms that match the condition and always normal health and weight until 3 years ago?

I have Nutcracker Sydrome and severe gastroparesis.

Have you considered surgical treatment for NC syndrome?

The thing I find that helps the most for my visceral hypersensitivity is a nitrate medication (nicorandil, but glyceryl trinitrate patches or delayed release isosorbide tablets work too). Works in part by improving your gastric accommodation, but can also relax the pyloric valve too which might not be such a good idea for you. Then again, maybe that's what's needed to get it operating better again.

Interesting, maybe I'll try the patch. Where do I need to stick it? Is it available over the counter or only based on doctor prescription?

 

[kangaSue]

Yup, he said that I have NC syndrome, but he also diagnosed me with a bunch of other syndromes (at least 5) and during the examination he was saying 'you may have this' and 'you might have this' repeatedly, so I believe he's not 100% sure either.

I thought that Nutcracker Syndrome (NCS) might be the case. Will typically cause left side testicular pain or discomfort in guys.

If I happened to live in Holland, I'd be taking up the whole GI problem with the hospitals (and doctors) that authored the following paper (the Dutch Mesenteric Ischemia Study group), especially if Dr Scholbach mentioned the possibility of having MALS too.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6498801/ [Clinical management of chronic mesenteric ischemia]

I have Chronic Mesenteric Ischemia myself too but it's of 'unknown etiology' and not generally considered to be associated with NCS but that looks to be my cause of intestinal ischemia, via NCS causing autonomic dysfunction (I have idiopathic Autonomic Neuropathy too). One of the papers put out by these Dutch doctors gave me the idea of trying nicorandil for my abdominal pain and in the process of helping for that, also improved other gastroparesis symptoms, to the point that I could eat again without vomiting it all back up again.

Interesting, maybe I'll try the patch. Where do I need to stick it? Is it available over the counter or only based on doctor prescription?

You can place the patch in the same spots as for angina. I've also tried placing them on my abdomen and flanks and results are fairly similar. Nicorandil tablets are my better option though as you don't need a daily 12 hour with this to avoid developing tolerance to the nitrate. These are all prescription things here (Australia).

Have you considered surgical treatment for NC syndrome?

I'm desperately trying to give away a kidney to treat both GI and NCS symptoms if you want one. Doctors here have left me high and dry because there is nothing in the medical literature linking chronic intestinal ischemia and gastroparesis to NCS alone.

How does one test for this?

The most common test for CIPO is Antroduodenal Manometry. Full thickness biopsies help to see if it's neuropathic, myopathic, or both. There is also a genetic cause of CIPO.
https://www.ncbi.nlm.nih.gov/pubmed/18695303
https://rarediseases.org/rare-diseases/chronic-intestinal-pseudo-obstruction/

Interestingly, I have read it hypothesised that IBS may be the mild end of having CIPO. A small number of researchers have shown some effect with Mestinon (pyridostigmine) in adult patients with CIPO. (An acetylcholinesterase inhibitor can stimulate GI motility by prolonging the action of acetylcholine (an excitatory neurotransmitter) in the gut.) Tried it myself just for gastroparesis but didn't any improvement from it.

 

[FromHolland]

I thought that Nutcracker Syndrome (NCS) might be the case. Will typically cause left side testicular pain or discomfort in guys.

I'm aware of the symptoms it causes, but I don't experience flank or testicular pain/discomfort, so this is one of the things that could be just an anatomical feature that I have.

If I happened to live in Holland, I'd be taking up the whole GI problem with the hospitals (and doctors) that authored the following paper (the Dutch Mesenteric Ischemia Study group), especially if Dr Scholbach mentioned the possibility of having MALS too.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6498801/ [Clinical management of chronic mesenteric ischemia]

I was seen by one of the authors a few years ago; sorry to say, but he's was douchebag first class. Dismissed my symptoms as IBS and said I was a hypochondriac... he's head of the mesenteric ischemia treatment center in the Netherlands, so that's not an option for me anymore.

I have Chronic Mesenteric Ischemia myself too but it's of 'unknown etiology' and not generally considered to be associated with NCS but that looks to be my cause of intestinal ischemia, via NCS causing autonomic dysfunction (I have idiopathic Autonomic Neuropathy too). One of the papers put out by these Dutch doctors gave me the idea of trying nicorandil for my abdominal pain and in the process of helping for that, also improved other gastroparesis symptoms, to the point that I could eat again without vomiting it all back up again.

Really great that it helped you eating again without vomiting! So far I've been lucky enough to 'only' have abdominal pain after eating, but lately horrible nausea too, mainly in the morning and on empty stomach.

Will discuss the patches with my GP after the Gastric Emptying Scintigraphy test has been done and results are ready.

I'm desperately trying to give away a kidney to treat both GI and NCS symptoms if you want one. Doctors here have left me high and dry because there is nothing in the medical literature linking chronic intestinal ischemia and gastroparesis to NCS alone.

I read that transposition of the left renal vein could possible solve the pain and symptoms associated with NCS, but it also has risks and could make GP worse than before... but agree not that much literature linking both conditions, although I found a few sources:
https://www.gastrojournal.org/article/0016-5085(90)91255-5/pdf

https://books.google.nl/books?id=zE...AQ#v=onepage&q=Ischemic gastroparesis&f=false

https://books.google.nl/books?id=zC...AQ#v=onepage&q=Ischemic gastroparesis&f=false

https://www.ingentaconnect.com/content/sesc/tas/2006/00000072/00000004/art00013

The most common test for CIPO is Antroduodenal Manometry. Full thickness biopsies help to see if it's neuropathic, myopathic, or both. There is also a genetic cause of CIPO.
https://www.ncbi.nlm.nih.gov/pubmed/18695303
https://rarediseases.org/rare-diseases/chronic-intestinal-pseudo-obstruction/

Interestingly, I have read it hypothesised that IBS may be the mild end of having CIPO. A small number of researchers have shown some effect with Mestinon (pyridostigmine) in adult patients with CIPO. (An acetylcholinesterase inhibitor can stimulate GI motility by prolonging the action of acetylcholine (an excitatory neurotransmitter) in the gut.) Tried it myself just for gastroparesis but didn't any improvement from it.

Thanks for the links, will dive into it!

 

[kangaSue]

I read that transposition of the left renal vein could possible solve the pain and symptoms associated with NCS, but it also has risks and could make GP worse than before... but agree not that much literature linking both conditions, although I found a few sources:

Of all the surgical options for NCS (other than an extravascular stent, an external wrap around the renal vein), nephrectomy is actually the least invasive procedure to have done. Veins are relatively weak vessels too so transposition of them has a high failure rate, as does renal vein stenting.

There's evidence around for Ischemic Gastroparesis but all the cases in the medical literature have stenosis of one or more of the bowel arteries however, I'm one of the 15% or so of cases who don't have any artery stenosis so it's a microvascular blood flow problem - non-occlusive chronic mesenteric ischemia.

Microvascular ischemia is ultimately what happens in MALS or other causes of stenosis too (disruption of the mesenteric resistance vessels, the microvascular blood flow regulators) to cause abdominal pain and gastroparesis (if it occurs).

Nothing in the medical literature says that Nutcracker Syndrome alone can be a cause of gastroparesis whether that be ischemic otherwise but anecdotally from a facebook group, it is the case for a sub-set of us and many find it to resolve in fixing NCS.

Autonomic dysfunction is known to cause (non-occlusive) CMI though and NCS is known to cause autonomic dysfunction but I can't get any doctor to grasp the links and more to the point, none of the ten or so doctors I've seen even know that NCS can cause autonomic dysfunction. I know from talking online to a USA NCS expert (and a kidney transplant specialist) that it's most likely due to activation of the renen-angiotensin system and other humoral factors from increased venous pressures into the left kidney and left adrenal gland and abdominal inflammation and/or congestion causing compression of the vagus nerve somewhere in the celiac plexus.

I'm aware of the symptoms it causes, but I don't experience flank or testicular pain/discomfort, so this is one of the things that could be just an anatomical feature that I have.

That's my other problem. Doctors consider me 'atypical' for NCS too because I don't have left flank pain with it, even though I have a totally occluded left renal vein and they couldn't get a catheter through it during a Venogram. Large case studies find left flank pain is absent in about 20% of cases of NCS though (and up to 40% in some studies). I also lack in lower abdominal and pelvic pain but that is something that is controlled by the nitrate for me and it's a whole different story without that med.

I was seen by one of the authors a few years ago; sorry to say, but he's was douchebag first class. Dismissed my symptoms as IBS and said I was a hypochondriac... he's head of the mesenteric ischemia treatment center in the Netherlands, so that's not an option for me anymore.

Very disheartening to hear of your experience. These guys seem to be the only really clued up people about chronic ischemia. They have developed the only test around (or are still working on perfecting it) to detect chronic intestinal ischemia, Visible Light Spectroscopy.

 

[FromHolland]

Thanks for all the details @kangaSue! Very educational and you sure know your stuff.

Maybe off topic, but there's something I've noticed since I developed the abdominal pain and all the other GI symptoms three years ago. It's not bothering me tbh, but makes me wonder what it could mean, how it could be related to the symptoms that I have and if it's familiar to you/others on this forum since it's now more a rule than an exception in my case. Dr. Google didn't give me back anything useful on this topic.

Here it comes...My stool has a different color almost every day, as well as different colors in a single stool (ranging from dark green to light brown and everything in between). I know that what you eat affects the color of your stool, but I'm wondering to which extent. Also, I feel the structure has changed over recent years. Before (having the symptoms) I had mostly type 4 of the Bristol stool chart and now sometimes it's mushy and sometimes there's a snake/sausage with lumps or blobs on the outer edge that doesn't seem that neatly compressed... I don't have constipation but seems my stool seems to be a combo of type 4 with type 2 and typ 5 in one... does that make sense at all?

 

[kangaSue]

My stool has a different color almost every day, as well as different colors in a single stool (ranging from dark green to light brown and everything in between)

Sounds like there could be a combination of things going on. Bile determines the colour of your stool so a bile acid malabsorption (BAM) issue could be part of it, don't know if that can appear as variable colouring within a single stool but BAM tends to cause more an issue of diarrhea (some studies show BAM to occur in about 1/3 of cases of IBS-D).
Loose stool or a very thin sausage stool can result from chronic intestinal ischemia but no doubt there can be other explanations for it and I haven't really delved all that much into it - could be just someting to do with colon bacterial imbalance too I guess. For comparison sake, mine are always loose, greenish, stink to high heaven, and has an an oily slick to it - nothing that concerns my GI, but it might do if it was coming out of their butt I think!

 

[Pyrrhus]

Recently, I have been diagnosed with a dysfunctional duodenum and pylorus, caused by an unknown pathogen. My duodenum doesn't contract normally, i.e., low and infrequent motility. Also, the exit muscle of my stomach (pylorus) was open and didn't close at all during the 45 min examination according to the specialist who did the test.

For what it's worth, gaping pylorus sounds like it might lead to Duodeno-gastric reflux:

Gastrointestinal Reflux as Dysautonomia
https://forums.phoenixrising.me/threads/gastrointestinal-reflux-as-dysautonomia.86644/

In case anyone is interested, there are actually three different types of reflux, each associated with three different valves (sphincters) in the digestive system.

1. Gastro-esophageal reflux is when the lower esophageal sphincter fails to close, allowing the contents of the stomach, such as acidic enzymes, to flow back up into the esophagus. This often results in heartburn.
2. Laryngo-pharyngeal reflux is when the upper esophageal sphincter fails to close, allowing contents in the esophagus to flow back up into the back of the throat and then back down into the lungs. This often results in coughing fits and a feeling of "nasal drip" on the back of the throat.
3. Duodeno-gastric reflux is when the pyloric sphincter fails to close, allowing contents in the small intestine, such as bile, to flow back up into the stomach. Symptoms may include pain, nausea or possibly vomiting after eating/drinking anything, even in small amounts. One patient describes it here: https://forums.phoenixrising.me/thr...y-disorder-duodenum-and-gaping-pylorus.79344/

It is apparently common to have multiple types of reflux at the same time. All three valves (sphincters) in the upper digestive system are controlled by the autonomic nervous system.