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Dealing with Gastrointestinal Issues in Parkinson’s – Webinar Notes

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In March 2022, the Parkinson’s Community Los Angeles hosted a webinar on common gastrointestinal (GI) issues in Parkinson’s disease (PD) and treatment options with gastroenterologist Dr. Wael El-Nachef.  The speaker described gut issues including constipation, bloating, weight loss and malnutrition, poor absorption of medications, reflux, and difficulty swallowing.  Up to 80% of those with PD experience constipation.  The majority of those with PD experience two kinds of constipation.

According to the speaker, constipation is one of the earliest PD symptoms, as people may have constipation for years or decades before getting motor symptoms and a medical diagnosis of PD.  The two most common kinds of constipation are slow transit, where the colon moves slowly, and dyssynergic defecation, where the muscle movements to defecate are unsynchronized.  Constipation was originally attributed as a medication side effect of Sinemet, but it is now seen as a symptom of the disease.  There is a six times greater prevalence of constipation in people with PD compared to the average population.  Additionally, men with less than one bowel movement (BM) per day are at a three times greater risk of developing PD than those who have daily BMs. 

Constipation in PD can be difficult to diagnose because it may take a lot for patients to know that they are severely constipated. When some people have diarrhea, it could be overflow diarrhea from constipation, so taking antidiarrheal medication would make things much worse. There are many treatment options for constipation.  They include over-the-counter oral laxatives such as Senna or polyethylene glycol, over-the-counter rectal therapies such as enemas and suppositories, and prescription medications such as Linaclotide or Lubiprostone.

Another common GI issue is bloating.  The most common cause for bloating is constipation, although small intestinal bacterial overgrowth (SIBO), diet, or gastroparesis may also be factors.  Thirty-four percent of patients with dyspepsia (indigestion), nausea, or bloating will test positive for SIBO.  The rate of SIBO relapse after antibiotics in people with PD is high, at 45% after six months.  Gastroparesis is dysmotility of the stomach that acts as a sort of stomach paralysis, which makes the stomach unable to accommodate, grind, and push food into the intestine.  A poor absorption of levodopa can point to gastroparesis. Some treatment options are Metoclopramide, Domperidone, or Prucalopride.  

Swallowing issues, also known as dysphagia, are also a common PD gut symptom.  PD can cause dysmotility in the esophagus, as well as a difficulty transferring food and liquid from the mouth to the throat, leading to coughing and choking.  Both of these raise the possibility of aspiration pneumonia, where food, liquids, and saliva go down into the lungs rather than the esophagus, which can be very serious if it goes on for a long time.  If this is an issue, it is important to discuss it with your physician.

For more information on constipation and swallowing issues, please see these Stanford Parkinson’s Community Outreach webpages:

Constipation and PD

Speech and Swallowing

For a recording of this webinar, please see this Parkinson’s Community Los Angeles webpage

See my notes below of the March 3 webinar. 

Regards, 

Joëlle Kuehn  

“Dealing with Gastrointestinal Issues in Parkinson’s” – Webinar Notes

Speaker:  Wael N. El-Nachef, MD, PhD, gastroenterologist, UCLA

Webinar Host:  Parkinson’s Community Los Angeles 

Webinar Date:  March 3, 2022

Summary by:  Joëlle Kuehn, Stanford Parkinson’s Community Outreach

Parkinson’s disease:

  • Caused by Lewy bodies:
    • Abnormal clumping of alpha-synuclein that is toxic to nerve cells
    • Dopamine-producing cells are more sensitive to Lewy body damage and are first to go
  • Hallmark motor symptoms of PD:
    • Resting tremor
    • Bradykinesia
    • Rigidity
    • Postural instability
  • Some non-motor symptoms:
    • Autonomic orthostasis
    • Sleep disorders
    • Olfactory disturbances
    • Gastrointestinal dysmotility.  Dysmotility means abnormal movement (slow, fast, absence of movement)
  • GI manifestations were largely underappreciated, but more recently, GI involvement is regaining recognition
  • GI issues can provide insight on how/when disease starts
  • Nerves impacted in PD, the enteric nervous system (ENS) in gut has as many nerve cells as your spinal cord.  ENS also does not exist in isolation, they communicate with brain and spinal cord
  • Constipation is one of the earliest symptoms of PD.  Can be years or decades before people get motor symptoms and a medical diagnosis of PD

Gastrointestinal issues seen in PD GI clinic:

  • Constipation:
    • “Diarrhea”
    • Fecal urgency/soiling/incontinence 
      • Needing to run to the bathroom as soon as you feel like you need to go
      • Soiling/incontinence: leakage
  • Bloating
  • Weight loss and malnutrition
  • Poor absorption of medications 
  • heartburn/reflux
  • Difficulty swallowing 
  • Note: these issues involve multiple organs, so have to keep an open mind in finding the cause

Constipation in PD:

  • Most common non motor symptom: up to 80% of PD patients
  • Many kinds:
    • Slow transit: colon is moving slowly
    • Dyssynergic defecation: anorectal dysfunction: muscle movements around the anus to defecate are unsynchronized
    • Majority of PD patients have both
  • Originally attributed as a medication side effect of Sinemet but seen as a symptom of the disease
  • 6x greater prevalence compared to average population
  • Constipation can precede development of motor symptoms of PD by several years.  Men with less than one bowel movement (BM) per day is at a 3x greater risk of developing PD than those who have daily BMs 
  • Constipation in PD is tricky:
    • It’s not simply “fewer bowel movements”
    • PD patients often don’t have a good sense of when they’re constipated.  Takes a lot for some patients to know they are severely constipated.  May have to do with sensory nervous system, the brain doesn’t know when there is constipation
  • Constipation with overflow diarrhea:
    • Do not take antidiarrheal medications if you have PD.  Unless it is needed if you are dehydrated at a life threatening level 
    • May require manual disimpaction
    • If still able to pass gas, usually can clear stool with a bowel cleanse (or multiple).  Similar to prior to a colonoscopy
    • These patients usually require prescription-strength laxatives    

Diagnosing slow transit constipation:

  • Sitz marker study:
    • Metal disks that are in a capsule and you swallow it
    • When capsule dissolves, they disperse throughout your GI tract, and then you take x-rays over several days to track how long it takes for the disks to pass through
    • Is an old school study, but it works
  • Wireless motility capsule (SmartPill):
    • *Probably* safe to use with DBS.  Haven’t gotten clear guidance from manufacturers that it is safe, but neurosurgeons speaker has spoken to say it is probably safe
    • Patient has to be able to swallow large pill
    • Large pill that you swallow, connects to radio receiver on your hip and telly you how long it takes to get through the stomach, small intestine and colon
    • Able to measure motility throughout GI tract

Diagnosing dyssynergic defecation:

  • Anorectal manometry:  Pressure sensor catheter with inflatable balloon inserted through the rectum to measure function of rectal and anal sphincter muscles 
    • Does not require sedation/anesthesia
    • If the test shows dyssynergia, the patient can undergo a “biofeedback therapy”
  • MR defecography:
    • Less common
    • A type of MRI
    • Also able to check for anatomic causes of difficulty with defecation

Constipation treatments:

  • Over-the-counter oral laxatives:
    • Senna and bisacodyl (Dulcolax):
      • Stimulants, can cause cramping, difficult to predict time to effect
      • If needed more than once a week, there is probably a better med out there for you because it will be uncomfortable
    • Fiber supplementation (i.e. Psyllium):
      • Can worsen bloating, especially if started during severe constipation
      • Start after clearing severe constipation, and start with a low dose (1 teaspoon) and increase gradually              
    • Polyethylene glycol (PEG, Miralax):
      • Draws water into the colon
      • Usually well tolerated
      • As solo treatment it may not be effective enough for severe cases
    • Docusate (Colace):
      • Stool softener
      • Well tolerated
      • Smallest gun in the arsenal
    • Magnesium based:
      • Not recommended for regular daily use (but ask your PCP)
  • Over-the-counter rectal therapies:
    • Enemas and suppositories:
      • Particularly helpful with dyssynergic defecation
      • Considered very safe
      • Enemas can be tap water (doesn’t have to be saline)
      • Suppositories don’t have to be medicated with Dulcolax (glycerin should be fine)
      • These types of treatments can help stimulate the defecation reflex
  • Prescription medications:
    • Linaclotide (Linzess): increases fluid in the intestine and colon
      • Safe:  Does not interact with typical PD meds
      • Some patients experience severe diarrhea and have to stop it
    • Lubiprostone (Amitiza): increases fluid in the intestine and colon
      • Safe:  Does not interact with typical PD meds
      • Most PD speaker has worked with experience severe diarrhea            
    • Prucalopride (Motegrity):
      • Doesn’t interact with typical PD meds
      • Increases contractions and speeds up motility throughout the GI tract.  Thus, can help dysmotility in the stomach and small intestine too
      • Usually need to pair it with PEG (Miralax)
      • Most patients do extremely well with thi medication.  It is treating the underlying slow transit colon, not just flushing things out
      • But:
        • FDA warning for possible suicidal ideation/depressio
        • Expensive, no generic, real battle to get insurance to cover this

Note:  Do not use anti-diarrheal medication unless directed by a physician.  Imodium will slow down an already slow GI tract which can be disastrous.

Bloating causes: 

  • Most common cause for bloating is constipation
  • SIBO (small intestinal bacterial overgrowth)  
  • Gastroparesis (not true bloating, but patient perceives as so)
  • Diet (carbonated beverages, chewing gum, FODMAP foods)

SIBO in PD:

  • Not well studied
  • 34% of PD patients with dyspepsia, nausea, and or bloating will test positive for SIBO
  • Relapse rate of SIBO in PD patients after antibiotics: 45% at 6 months
  • Theory: underlying risk factor (decreased motility) still present 
  • Response to the theory: start prokinetic agent to speed up motility and thus reduce risk of relapse
  • There is a lactulose breath test to check for SIBO

Gastroparesis:

  • “Stomach paralysis”
  • Stomach has to expand to accommodate food, grind the food, and then push the food into the intestine, which are very complex movements
  • Dysmotility of the stomach is common in PD and can cause multiple different types of problems
  • Can be a side effect of constipation or of levodopa, but PD can also directly involve the nerves of the stomach
  • Difficult condition, but important to treat 
  • Causes of gastroparesis in PD:
    • Weight loss:
      • Difficulty timing meds with meals
      • Loss of sense of smell/taste
      • Difficulty swallowing
      • Depression 
    • Bloating:
      • Constipation
      • SIBO
      • Diet
    • Poor absorption of levodopa points to gastroparesis:
      • Timing of levodopa presumes stomach is emptying normally
      • In gastroparesis, food may remain in stomach for hours
      • Protein in food interferes with absorption of levodopa
  • Treatment of gastroparesis in PD:
    • In non-PD patients, usually recommend small, frequent meals.  But this isn’t an option in PD patients if you’re timing levodopa
    • Metoclopramide (Reglan): not an option in PD because it blocks dopamine receptors in the brain, and can worsen PD motor symptoms
    • Domperidone: effective and doesn’t worsen PD motor symptoms, but is associated with increased risk of cardiac issues and death.  Need special permission from the FDA to use
    • Prucalopride: appears to be effective in gastroparesis.  Also can benefit constipation and SIBO

Dysphagia in PD:

  • Dysphagia = swallowing issues
  • PD can cause dysmotility in the esophagus:
    • Sense of food getting stuck
    • Chest pain with swallowing
    • Reflux and regurgitation
  • PD is also associated with difficulty transferring food/liquid from mouth to the throat:
    • Called oropharyngeal dysphagia
    • Choking/coughing when eating
    • Difficulty swallowing pills
  • Both of these scenarios raise the risk of aspiration pneumonia:
    • When food/liquids/saliva goes down into the lungs instead of the esophagus
    • Can be serious if it goes on for a long time
    • Risk can be reduced if underlying issues are treated
    • Alert your physician if you haven these problems

Tips:

  • Avoid opiates if at all possible.  If you have to take opiates (ex. For orthopedic surgery), ask your physician to also provide you with Naldemedine (Symproic) to help prevent the GI side effects
  • If you have these sort of GI symptoms, you’ll also certainly need a colonoscopy and probably also an upper endoscopy.  Stay up to date with these
  • Find a good registered dietician who is familiar with PD nutrition issues.  Simple test is to check if they know about levodopa absorption issues with protein.
  • For severe constipation, very high chance that any medication you receive will fail unless you do a bowel cleanse first
  • While you wait for your GI appointment, try taking over-the-counter treatments like enemas/suppositories, miralax, and milk of magnesia.  Can speed things up because it helps doctor to know what works and doesn’t work

Severe GI symptoms to be taken very seriously:

  • Weight loss:  Loss of muscle mass leads to falls
  • Dysphagia with aspiration:  Leads to pneumonia
  • New or sudden severe abdominal pain:  Go to the ER

Question & Answer:

Question:  What is the microbiome’s relationship with PD?

Answer:  I think there is so much enthusiasm about it, but I want to make sure the enthusiasm doesn’t outstrip the science because it is very early.  We are seeing exciting things in mouse studies that point to a microbiome, but it will take more research to show that applies to humans with PD.  Related to that, there are also microbial fecal transplants, but it is on a case report status, but until we have lots of blind randomized studies, we have to be patient and wait.  There’s not enough data to go that route. 

—

Question:  Why do you need to pair Motegrity with a PEG?

Answer:  The patients I see have severe constipation, so Motegrity is a good start because it increases the contractions. Miralax works by softening the stool.  If you put them together it works well for severe constipation. 

—

Question:  What are your thoughts on bentonite clay or other natural remedies?

Answer:  I’m not too familiar with that.  That’s not to say that it’s not helpful but I haven’t heard of that kind of clay.  There are other natural things that work really well like chia seeds.  A registered dietician would know better regarding natural things such as if and how to take the clay, and what else to take.

—

Question:  Does PD start in the gut?

Answer:  I’ve found that one-third to a half of patients have GI issues in the years before being diagnosed with PD, but the rest did not.  Some lost their sense of smell many years before a PD diagnosis.  For them, it could be that PD started in the olfactory bulb of the nose and that is how it spread.  These are only theories for now.  There is a large group of PD patients where it starts in the gut, but it isn’t everyone, so we are still figuring it out.

—

Question:  How do you find a gastroenterologist with PD experience?

Answer:  The best would be to look for GI doctors that have motility as a subspecialty. Motility covers not just PD but also other diseases that slow down the GI tract.  They will be comfortable with the medications that are suitable for PD patients.

—

Question:  Is there a connection between PD and ulcerative colitis?

Answer:  Yes.  It’s not 100% proven but there is strong clinical research suggesting that having inflammatory bowel diseases such as ulcerative colitis predisposes you to developing PD later.  If you have chronic uncontrolled ulceration, it can possibly trigger the alpha-synuclein that you might have a little bit of to clump into Lewy bodies.  

—

Question:  When is it time for duodopa?

Answer:  My understanding is that it is still in phase 3 clinical trial, but we have patients at UCLA who do that.  It’s normally for patients who are having severe difficulty getting level dosing of their carbidopa levodopa, but I usually defer those decisions to the neurologist taking care of the patient.  It can be a very powerful way to get a good control of PD but there are still risks.

—

Question:  My father’s PD worsened because they prescribed him metoclopramide not knowing it was very bad for people with PD.  What can we do to provide an interdisciplinary outreach to educate the wider array of physicians who treat PD patients to prevent them from prescribing medication that makes PD worse?                   

Answer:  This is more of a systems issue.  A quick solution would be to report the medication that you know you can’t take as an allergy on a patient’s medical list because it will trigger all warning systems.  Now we have better options that are safer and more effective.

—

Question:  How do you avoid getting indigestion after you eat?

Answer:  There’s many ways, it depends on what is causing the indigestion.  Indigestion can also mean a lot of different things to different people, so more information and time is needed for a specific answer.  Most of the time for PD and gastroparesis, it is medicine that will fix it.  If it is regarding certain foods, talking to a dietician can be helpful, don’t severely limit your food variety.

—


Question:  Can you comment on the botox injection to open the pyloric valve in the stomach for gastroparesis?

Answer:  There have been some studies about gastroparesis and botox in general, and have mixed results.  Not all gastroparesis is due to the pyloric valve not opening enough. If you don’t have the form of gastroparesis where the pylorus is not opening up, it probably won’t be helpful. 

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