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GASTROPARESIS - Info, links, resources, vids, PDF's & more

What is Gastroparesis?

According to The National Organization for Rare Disorders, "Gastroparesis (abbreviated as GP) represents a clinical syndrome characterized by sluggish emptying of solid food (and more rarely, liquid nutrients) from the stomach, which causes persistent digestive symptoms especially nausea and primarily affects young to middle-aged women, but is also known to affect younger children and males. Diagnosis is made based upon a radiographic gastric emptying test. Diabetics and those acquiring gastroparesis for unknown (or, idiopathic) causes represent the two largest groups of gastroparetic patients; however, numerous etiologies (both rare and common) can lead to a gastroparesis syndrome.

Gastroparesis is also known as delayed gastric emptying and is an old term that does not adequately describe all the motor impairments that may occur within the gastroparetic stomach. Furthermore, there is no expert agreement on the use of the term, gastroparesis. Some specialists will reserve the term, gastroparesis, for grossly impaired emptying of the stomach while retaining the label of delayed gastric emptying, or functional dyspepsia (non-ulcer dyspepsia), for less pronounced evidence of impaired emptying. These terms are all very subjective. There is no scientific basis by which to separate functional dyspepsia from classical gastroparesis except by symptom intensity. In both conditions, there is significant overlap in treatment, symptomatology and underlying physiological disturbances of stomach function.

For the most part, the finding of delayed emptying (gastric stasis) provides a “marker” for a gastric motility problem. Regardless, the symptoms generated by the stomach dysmotility greatly impair quality of life for the vast majority of patients and disable about 1 in 10 patients with the condition.

While delayed emptying of the stomach is the clinical feature of gastroparesis, the relationship between the degree of delay in emptying and the intensity of digestive symptoms does not always match. For instance, some diabetics may exhibit pronounced gastric stasis yet suffer very little from the classical gastroparetic symptoms of: nausea, vomiting, reflux, abdominal pain, bloating, fullness, and loss of appetite. Rather, erratic blood-glucose control and life-threatening hypoglycemic episodes may be the only indication of diabetic gastroparesis. In another subset of patients (diabetic and non-diabetic) who suffer from disabling nausea that is to the degree that their ability to eat, sleep or carry out activities of daily living is disrupted gastric emptying may be normal, near normal, or intermittently delayed. In such cases, a gastric neuro-electrical dysfunction, or gastric dysrhythmia (commonly found associated with gastroparesis syndrome), may be at fault.

Therefore, these disorders of functional dyspepsia, gastric dysrhythms, and gastroparesis are all descriptive labels sharing similar symptoms and perhaps representing a similar entity of disordered gastric neuromuscular function. For this reason, a more encompassing term, gastropathy, can be used interchangeably with gastroparesis."

Information quoted above from NORD can be found in the PDF available below, or from the NORD site, here: https://rarediseases.org/rare-diseases/gastroparesis/?filter=ovr-ds-resources

Signs & Symptoms of Gastroparesis can include:

nausea
vomiting
cyclical vomiting
gas / belching
abdominal pain
bloating
visible abdominal distention (patients can appear pregnant-looking)
loss of appetite
reflux or gastric esophageal reflux disease (GERD)
esophageal spasm (also called non-cardiac chest pain)
early satiety (feeling full after eating very little)
erratic blood glucose levels (see excerpt below)

For Diabetics with Gastroparesis (according to NORD):

"In the majority of insulin-dependent diabetics, gastroparesis is often overlooked and under-diagnosed, especially in its early stages. The characteristics of poor glucose control and acid reflux are often the only signatures of delayed gastric emptying. The typical picture seen in the diabetic gastroparetic stomach is low blood-glucose levels at bedtime with very high blood-glucose levels by the next morning. This situation is interspersed with days of good blood-sugar control. Some scientific studies have found diabetic gastroparesis to correlate with autonomic neuropathy (diabetic autonomic neuropathy, or DAN and cardiac autonomic neuropathy, or CAN), but not with the duration of diabetes, metabolic control or other chronic complications. It is to be noted that acute hyperglycemia profoundly retards gastric emptying.

If DAN is present, then regaining control of blood glucose can be enormously challenging. For Type 2 diabetics (non-insulin dependent), absorption of oral hypoglycemic agents may be very unpredictable due to the delayed gastric emptying.

Gastroparetic symptoms in most patients show either a pattern of cycling with flare-ups, or daily occurrences persisting for years."

See pp 2-3 of the downloadable PDF from NORD, which provides detailed info about all things GP!

GP Diagnosis

According to NORD, "A diagnosis of gastroparesis is made based upon a thorough clinical evaluation, a detailed patient history, and a variety of specialized tests. Tests may first be performed to rule out other causes of delayed gastric emptying such as obstruction of the gastrointestinal tract. Additional tests are then performed to confirm a diagnosis of gastroparesis.

Tests to rule out other causes of delayed gastric emptying include routine blood tests, an upper gastrointestinal endoscopy, a barium gastrointestinal series with small-bowel-follow-through, and an abdominal ultrasound. During an upper GI endoscopy, a thin, flexible tube (endoscope) is run down the throat to the stomach and the small intestines. The tube has a tiny camera attached to it that allows a physician to search for abnormalities and obstructions within the gastrointestinal tract. During an ultrasound, reflected sound waves create an image of the abdomen.

An upper endosocpic procedure may lead to a serendipitous diagnosis of gastroparesis through the discovery of identifiable food within the stomach after the pre-procedure overnight fast.

The radionuclide (scintigraphy) solid-phase gastric emptying test (GET), the gold standard for diagnosing gastroparesis, can now be measured using only four images: baseline, 1-hour, 2-hour, and 4-hour. The GET, a non-invasive test, is widely available and accessible. The test involves eating food that contains a small amount of radioactive material (radioisotope). This tiny dose of radiation can be seen on a gamma camera (much like an X-ray machine), but is not dangerous. The scans allow a physician to determine the rate at which food leaves the stomach. Many other methods are now being employed to track gastric emptying times; for instance a gastric breath test (not in common use in North America) and a new encapsulated recording device, called SmartPill has the ability to measure gastric pH, GI luminal pressures, and determine gastric and intestinal transit time.

Other diagnostic tests for GP can include electrogastrography (EGG). This is often referred to as the EKG of the stomach. EGG can serve as a screening tool and is complementary to the gastric emptying test. The EGG is capable of detecting specific gastric electrical rhythm abnormalities and indirectly gives an indication of the integrity of the stomach's ICC network. This test is generally done using a non-invasive method with cutaneous (skin) leads. A less common method of administering an EGG is a direct, invasive means via mucosa (either during endoscopy or serosa recordings can be done at the time of gastric electrical stimulation placement for the treatment of nausea and vomiting).

Many patients with symptoms of gastroparesis often have related nutritional deficiencies and disorders. Nutritional laboratory measurements are important. Laboratory tests to include are albumin, pre-albumin, hemoglobin A1C (on all diabetic patients), ferritin, B-12, and 25-hydroxy vitamin D."

See pp 5-6 of the PDF from NORD below for more info about Diagnosis, and additional pages for info about Treatments, Therapies, Clinical Trials and more.

Gastroparesis Related Patient Organizations

Association of Gastrointestinal Motility Disorders, Inc. (AGMD)

The Association of Gastrointestinal Motility Disorders, Inc. (AGMD) was incorporated in 1991 and is one of the oldest nonprofit organizations in existence, with a focus on digestive motility diseases and disorders. Our international organization brings together a diverse group of individuals: patients, family members, physicians, nurses, basic science and clinical researchers, pharmaceutical and diagnostic professionals, home health care workers, dietitians, biotech industrialists, other organizations and those in the community interested in digestive motility diseases and disorders. We provide a variety of resources and programs centering on education, the dissemination of information, advocacy, outreach, research and support. AGMD serves as an integral educational resource for digestive motility diseases and disorders. It also functions as an important information clearinghouse for members of the medical, scientific and nutritional communities. In addition, AGMD provides a forum of support for patients (and their families) suffering from digestive motility diseases and disorders.
140 Pleasant Street Lexington, MA, USA
(781) 275-1300
Email: info@agmdhope.org
Web: https://agmdhope.org/

American Neurogastroenterology and Motility Society

THE MISSION AND GOALS OF THE ANMS: The American Neurogastroenterology and Motility Society is an organization that was established in 1980 dedicated to the study of neurogastroenterology and gastrointestinal motility and functional GI disorders.

Mission of the ANMS: To be the multidisciplinary society leading the field of neurogastroenterology by fostering excellence in research, education, training, and patient care.

Neurogastroenterology encompasses the study of brain, gut, and their interactions with relevance to the understanding and management of GI motility and functional GI disorders.

Web: https://motilitysociety.org/

FB: FOLLOW @ANMSOCIETY » FOLLOW US ON FACEBOOK

Handout: https://motilitysociety.org/pdf/brochures/gastroparesis.pdf

International Foundation for Gastrointestinal Disorders (IFFGD)
The International Foundation for Functional Gastrointestinal Disorders (IFFGD) is a non-profit, educational and research organization. Their mission is to inform, assist, and support people affected by gastrointestinal (GI) disorders. IFFGD was founded in 1991 by one person struggling with the challenges imposed by a chronic GI disorder. Many others, from all walks of life, have joined with us. We work with patients, families, physicians, nurses, practitioners, investigators, regulators, employers, and others to: broaden understanding about GI disorders, support and encourage research, and improve digestive health in adults and children.
537 Long Point Rd. Suite 101 Mount Pleasant, SC, USA
(414) 964-1799
Email: iffgd@iffgd.org
Web: https://iffgd.org

Also Check Out MAYO Clinic and Cleveland Clinic for info/resources, which others in the GP community recommend.

Would you like EBE to host a Gastroparesis Coaching Group?

There is an OPEN ENROLLMENT for all patients with GP, and/or other Rare Diseases, Chronic Illnesses or Disabilities, who wish to EMPOWER their lives, gain support and make friends with others just like them in our Coaching Groups! Our Empowering Coaching Groups are different from disease-focused support groups which often times are not as supportive or empowering as we'd like. Our coaching groups provide actual coaching! We want to help you set goals and achieve them. Make positive changes. Transform your experiences or perspective. Find Resilience and renewed hope.

EBE has 5 awesome Coaching Groups designed for people like US, living with GP and other rare diseases, chronic illness and/or disabilities. EBE offers Patient Advocacy Coaching, which may be of interest. Check out our Coaching pages to learn more! Everybody Empowered also offers 1:1 Individual Coaching, Couples/Family Coaching, and Customized Coaching.

Also, if you are interested in having EBE host a private/closed OR open (larger enrollment) GP Coaching Group, contact us with your inquiry. We would be happy to customize a Coaching Group for you, your patients, or organization, or 5+ MG patients/friends/family. Let us know how we can empower you!

If you are interested in joining EveryBody Empowered's Unique Coaching Groups, scroll down on this page to get a sneak peak, or click the button below to head over to our Coaching Groups page:

Coaching Groups

Gastroparesis Peer Support Groups

I have found great support amongst fellow GP patients on Facebook, in particular. There are a number of different support group options. The largest of the groups "Gastroparesis Support Group" has around 44K members. That is quite a large membership for a rare disease population. The group called "Gastroparesis: Fighting for Change" is a particularly welcoming and supportive group with about 2.1K members. That group has additional state-based groups in The United States. There are many other GP and Gastrointestinal related groups on FB, with focuses on everything from humor to GP diet, prayer, and even a memorial group for GP warriors who have passed. I encourage you to check them out and join groups that resonate with you. This is a short list, there are many more. Join as many or as few as you like. I am a member of many groups & pages, and active in a few.

Gastroparesis Support Group

(44K+ members!)

https://www.facebook.com/groups/GastroparesisSupportGroup

Gastroparesis Support Website

www.curegp.org

Gastroparesis Fighting For Change - Advocacy Group

https://www.facebook.com/groups/GPMarch

Gastroparesis: Fighting for Change in New York - Advocacy Group

https://www.facebook.com/groups/761988120546217

GP Public Community Page

https://www.facebook.com/GastroparesisFighting4Change

Be sure to DOWNLOAD "THE GP RESOURCE GUIDE" (Gastroparesis Support Group) PDF AVAILABLE BELOW!!!

****** SPECIAL THANKS TO MELISSA ADAMS VANHOUTEN FOR CREATING THIS MASTERPIECE RESOURCE GUIDE FOR THE "GASTROPARESIS SUPPORT GROUP" AND ALLOWING ME TO SHARE IT WITH ALL OF YOU IN THE EVERYBODY EMPOWERED COMMUNITY! *****

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Gastroparesis (Greens Not Easy) Page

https://www.facebook.com/GreensNotEasy/

Gastroparesis (The Paralyzed Stomach Group) Page

https://www.facebook.com/groups/theparalyzedstomachgroup/

Gastroparesis:Diet & Support - Group

https://www.facebook.com/groups/1503722069644060/

Gastroparesis:Diet & Support - Website

www.gpfight.com

Treatments, Therapies, Clinical Trials & More

To learn more about Treatments, Therapies, Clinical Trials and more, download and read through the PDF from National Organization for Rare Disorders, below.

Gastroparesis Videos

What is Gastroparesis? - Great animation & info!

Get the rundown about GP with easy to understand visuals. Great little vid, worth sharing with your loved ones!

Chapters 0:00 Introduction 0:46 Causes of Gastroparesis 1:55 Symptoms of Gastroparesis 2:13 Diagnosis of Gastroparesis 3:13 Treatment of Gastroparesis Gastroparesis (gastro- from Ancient Greek γαστήρ - gaster, "stomach"; and -paresis, πάρεσις - "partial paralysis"), also called delayed gastric emptying, is a medical disorder consisting of weak muscular contractions (peristalsis) of the stomach, resulting in food and liquid remaining in the stomach for a prolonged period of time. Stomach contents thus exit more slowly into the duodenum of the digestive tract. This can result in irregular absorption of nutrients, inadequate nutrition, and poor glycemic control.[2][3] Symptoms include nausea, vomiting, abdominal pain, feeling full soon after beginning to eat (early satiety), abdominal bloating, and heartburn. The most common known mechanism is autonomic neuropathy of the nerve which innervates the stomach: the vagus nerve. Uncontrolled diabetes mellitus is a major cause of this nerve damage; other causes include post-infectious and trauma to the vagus nerve. Diagnosis is via one or more of the following: barium swallow X-ray, barium beefsteak meal, radioisotope gastric-emptying scan, gastric manometry, and esophagogastroduodenoscopy (EGD). Complications include malnutrition, fatigue, weight loss, vitamin deficiencies, intestinal obstruction due to bezoars, and small intestine bacterial overgrowth. Treatment includes dietary modifications, medications to stimulate gastric emptying, medications to reduce vomiting, and surgical approaches.[4]

Gastroparesis: Review & Update by Kenneth Koch, MD

American Neurogastroenterology and Motility Society gives this AWESOME presentation which gives really helpful information about GP: I also love the diagrams, slides and explanationsgfiven in the presentation. "In this edition of #ANMSChat, Dr. Kenneth Koch, MD presents information on the diagnosis, management, and treatment of gastroparesis. This video discusses what is currently known about the disorder and includes a live Q&A section at the end of the presentation. The original Facebook Live took place on August 2, 2019."

Gastroparesis - My Best Tips to Manage & Live With It

"Where you diagnosed with Gastroparesis and find it difficult to eat? Do you find Gastroparesis difficult to manage or live with? In this video, I discuss what Gastroparesis is and offer some of my best tips on how to manage and live with Gastroparesis! I discuss how many meals you should eat in a day, when to stop eating for the day, how big the meals should be, how to prepare foods so they are easier to digest, and how to eat them. If you are diabetic, it is important to watch this video because I discuss how additional steps need to be taken if you have gastroparesis.

DISCLAIMER: While I am a Gastroenterologist, I am not acting as your Gastroenterologist. The information provided on this channel is intended to be general educational content and not directed towards any one individual. If you believe you have a medical condition that deserves attention please seek care from your healthcare provider. If you are experiencing a life threatening emergency, call 911." EBE and Aimee Zehner is only sharing this vid to present the info for your own research.

Understanding Diabetic Gastroparesis

Gastroparesis is a problem with the stomach not working properly. It is also called delayed gastric emptying. With gastroparesis, food in the stomach empties slowly into the small intestine. This can cause symptoms such as nausea, vomiting, fullness after meals, bloating (usually above the belly button), and pain. Gastroparesis is common in people with diabetes. Learn more at www.gastro.org/gastroparesis. This program is supported by a grant from The Allergan Foundation. Disclaimer: EBE and Aimee Zehner is only sharing this vid & info for your own research.

ANMS Virtual Symposia: Gastroparesis - Why can't we fix it? / Failures of Drug Trials / GP in Children

American Neurogastroenterology Motility Society presents: This virtual symposia is Co-sponsored by Neurogastrx. August 24, 2022 – 6:00 pm ET/5:00 pm CT/3:00 pm/PT Moderator: Linda Nguyen MD Gastroparesis drug trials: why have they failed? Brian E. Lacy, PhD, MD, Mayo Clinic, Jacksonville How to treat Gastroparesis in Children. Are the current guidelines appropriate? Katja Kovacic, MD, Medical College of Wisconsin. EBE and Aimee Zehner is only sharing this vid to present the info for your own research.

The Connection between Gastroparesis/GI issues, Cervical Instability and the Vagus Nerve

Here is an interesting topic worth consideration, from Dr. Ross Hauser in Florida, USA: the connection between cervical spine instability and the vagus nerve causing a range of symptoms that can include Gastroparesis and digestive symptoms, as well as issues with balance, headaches, and mTBI-like symptoms. This physician offers an alternative/holistic meets Western-medicine approach to the topics. Disclaimer: EBE and Aimee Zehner do not endorse the doctor or treatments mentioned, only sharing this vid to present the info for your own research.

Aimee's Rare Disease Advocacy in Action!