In one moment, someone's life will be forever changed by a digestive motility disorder. 
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Association of Gastrointestinal Motility Disorders, Inc. (AGMD)
Monthly Online Newsletter
 
 July 2018
In This Issue
Quick Links
* Announcements
* The Results Of Our June Survey Are Here 
* Vacationing With Digestive Disorders - Melissa Adams VanHouten
* Some Additional Helpful Resources For Vacation Traveling
* Some Common Herb-Rx Drug Interactions
* Understanding Dysphagia - Stacy June
* My Story - Margie Kugler
* Personal Insights On Living With Diabetes - AGMD Series Of Interviews With Laura Schmidt
* July In Medical History

 

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Announcements

 Juvenile Arthritis Awareness Month

According to the American College of Rheumatology, a bout 1 child in every 1,000 develops some type of chronic arthritis. These disorders can affect children at any age, although rarely in the first six months of life. It is estimated that around 300,000 children in the United States have been diagnosed with the condition.

There are several forms of juvenile arthritis, each having its own distinct and special concerns. 
In diffuse cutaneous systemic scleroderma, there is a higher risk of GI symptoms such as feeling bloated after eating, heartburn, difficulty swallowing, diarrhea, or alternating diarrhea and constipation. 

You can find additional information about Scleroderma at: the Scleroderma FoundationAmerican College of Rheumatology.

  ________

Social Awareness Month

Social support enhances quality of life and provides a buffer against adverse life events. According to the University of Minnesota, "Healthy relationships are a vital component of health. The health risks from being alone or isolated in one's life are comparable to the risks associated with cigarette smoking, blood pressure, and obesity." There are many patients suffering from chronic illness who live in loneliness and isolation.  Let this  July Social Awareness Month remind us to reach out to others, share a listening ear, spend quality time with those in need, do acts of kindness, and build stronger social ties with family and friends.

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Herbal/Prescription Interaction Awareness Month

According to Consumer Health Digest, "There is a common misconception that just because something is natural makes it completely safe to take ... however, the truth is that most of these natural formulations can interact with certain prescription medication."  

In January 2018, Time Health published a report regarding a review from the British Journal of Clinical Pharmacology. Researchers from the South African Medical Research Council found that "a number of common herbal supplements, including green tea and Ginkgo biloba, can interact with prescription medications. These interactions can make drugs less effective-and may even be dangerous or deadly."

Be sure to inform your physician and pharmacist of all the herbal supplements you are taking to avoide potentially dangerous interactions with medications. Note, herbal supplements are not regulated by the FDA and consistency as well as quality may differ from one brand to another. 
The Results Of Our June Survey Are Here

Thanks to all who responded to last month's survey question!  Thus far, we have had 9 respondents.  Nearly all participants (8 out of 9, or 88.89%) feel they have been negatively or unfairly judged by others, including healthcare professionals and family members, due to their digestive motility disorder.


Vacationing With Digestive Disorders
By Melissa Adams VanHouten

Vacation season is upon us, and even those of us with chronic illnesses sometimes feel the need to take a break from the demanding, stressful world in which we live and spend a little quality time with family and friends. Though traveling with a digestive disorder poses unique challenges, these can be minimized with a bit of planning and a willingness to bend a touch to the needs of one's illness.
 
To begin with, make certain you are physically able to endure the trip.  Consider scheduling a doctor's visit shortly before embarking on your vacation to ascertain whether there are new or serious symptoms which would prevent you from traveling.  We all hate to cancel or postpone plans, but if those plans become a threat to your health, this should not be ignored.  And if you are unable to travel to your originally planned destination at the appointed time, perhaps you might consider staying a bit closer to home, postponing your trip for a short while, or even having a "staycation" instead.
 
Once you have established you are indeed going to embark on your adventure, there are several preparations which can make traveling easier.  Research the area where you will be staying to make certain you are aware of the location of all relevant medical facilities should you unexpectedly need to avail yourself of their services.  Review the local urgent care and emergency facilities in the area and verify that they will accept your insurance and can meet your needs.  Make sure there are pharmacies in the area that will work for you as well.  Inform your regular doctor you will be traveling and let him/her know you might need to get in touch via telephone or e-mail in the case of an emergency.  Also, make certain the hotels, attractions, and venues you will be visiting will be able to accommodate any special needs you have.
 
In addition to scoping out the area, confirm you have plenty of up-to-date medications and supplies with you (perhaps twice the amount you anticipate needing) and are not in need of refills.  If you will be separated from your luggage, keep your medications with you in their original prescription bottles or containers.  You do not want to risk your medications being lost with your baggage.  Bring a copy of your prescriptions, too, if this is possible. Also, consider carrying a written record of your (brief) medical history (or a note from your physician describing your condition and various medical needs) and wearing a medical alert band for the duration of your vacation.  These measures could be of great help to you in the event of a medical emergency.
 
There are several items you can bring with you during the actual travel portion of your trip which might make your life easier as well.  Make certain you have plenty of "disease-friendly" meals and snacks on hand in case you are unable to access these types of items during travel.  Traveling already puts additional stress on your body, and you certainly do not want to find yourself in a situation where you exacerbate this problem by having nothing tolerable to eat and/or drink.  Consider bringing games, reading materials, music, videos, or any other paraphernalia that will help pass the time.  Such forms of distraction can relax you and keep you from focusing on the hardships of the trip. 
 
If traveling by car, build extra time into your schedule, as you might need to stop more frequently than anticipated for rest, bathroom breaks, and exercise/movement. If traveling by plane, check with the Transportation Security Administration (TSA) regarding restrictions, procedures, and screening requirements associated with your medications and medically necessary devices and equipment. Additional information can be found on the TSA website at https://www.tsa.gov/travel/special-procedures and/or by contacting Passenger Support at (855) 787-2227.
 
Once you have arrived at your destination, make certain everything you need is in place, in working order, and suitable for your needs.  Remember to get enough rest, drink plenty of fluids, and plan for sufficient "downtime."  Make sure those traveling with you are aware the added stress of traveling can take a toll on your body and that you do not want to push yourself too far beyond your limits.  Restrict your outings and activities to what you can bear and be willing to adjust your plans as necessary to accommodate your needs.  Be flexible.  
 
Plan that vacation! Go out and have some fun - just exercise discretion and take care of yourself in the process.
  
Melissa Adams VanHouten is a former university political science instructor and corporate trainer who holds a B.S. in Political Science from St. Joseph's College and an M.A. in Political Science from Indiana State University. After being diagnosed with gastroparesis in February of 2014, she became a passionate advocate for those in her community who feel voiceless and ignored. Currently, as the Association of Gastrointestinal Motility Disorders (AGMD) Patient Education and Advocacy Specialist, co-author of the book, "Real Life Diaries: Living with Gastroparesis," and creator and administrator of several online support and advocacy groups, she spends her days advancing the cause of those who struggle to live with the sometimes devastating and life-altering effects of gastroparesis and other digestive diseases. It is her fondest desire to empower others to advocate for awareness, better treatments, and, ultimately, a cure.
Some Additional Helpful Resources
For Vacation  Traveling

Resource: 
Understanding Dysphagia
By Stacy June

Swallowing is something most people do without a conscious thought. But for those with a motility disorder known as dysphagia, swallowing food, liquids and saliva can be anything but simple. Dysphagia is the medical term used to describe difficulty in drinking liquids or swallowing solid foods. People with dysphagia have a greater risk of hydration and nutrition issues. There are numerous causes for dysphagia, including neurological damage, problems with muscular coordination, inflammation, tumors and other obstructions.

The process of swallowing is actually a complex one that involves the coordination of many muscles and nerves in the mouth (oral), throat (pharynx) and esophagus. Dysphagia can result from any condition that affects any of these areas.  For some, an esophageal stricture could cause a physical narrowing of available space for swallowed matter to travel through.  For others, uncoordinated or absent contractions in the esophagus may be the cause of the motility disorder. "The areas of dysfunction in the esophagus may be in the upper esophageal sphincter (UES), the body of the esophagus or the lower esophageal sphincter (LES)". Motility disorders that affect the esophagus include achalasia, diffuse esophageal spasm (DES), nutcracker (jackhammer) esophagus, and non-specific esophageal motility disorders. These conditions may be primary (not associated with another disease) or secondary to another disease that causes damage to the nerves and/or muscles.

Symptoms of dysphagia include difficulty swallowing, pain when swallowing, feeling like food is stuck, regurgitation and choking when swallowing. People may have dysphasia with solid food, liquids or both. Symptoms may occur occasionally or be frequent. As a result of dysphagia, people may also have unintentional weight loss or signs of malnutrition and/or dehydration.

Doctors can use a few different tests to diagnose dysphagia and its possible cause. These tests include barium X-ray (a swallowing study where different foods of different consistencies coated with barium are swallowed and visualized on x-ray), esophageal manometry (a thin tube with sensors is passed down the esophagus) and upper endoscopy.  These tests give valuable information about the shape of the esophagus, any possible obstruction or stricture as well as details about the strength and coordination of the muscles during the swallowing process.

Treatment for dysphagia varies depending on the cause and may include medications, esophageal dilation, dietary modifications, Botox injections and surgical procedures.


Stacy has Bachelor of Science degrees in Biology and Medical Technology and did some postgraduate work in Pathology. She spends her free time serving in her church as secretary/treasurer, volunteering for AGMD, and traveling with her husband. She has an autoimmune disease which has caused damage to multiple organs.
My Story
By Margie Kugler

I am a Scleroderma patient with approximately 14 other connected diseases. It all began in 2001 with the diagnosis of Crest Syndrome. I was 39 years old at the time.  But years before, at the age of 27, I was diagnosed with Raynauds  disease.  In seventeen years I have added a plethora of more autoimmune diseases and I am struggling everyday with this realization. Gastroparesis has been such a major part of my suffering that I searched for doctors to see if there was something that finally could be done to help me. I was desperate.

After searching high and low all over the Internet, I finally found a great gastroenterologist and surgeon, Professor B. from Perth Western Australia.

He put me through many tests nearly exactly one year ago. These results confirmed gastroparesis and also revealed -- to the astonishment of both doctor and patient -- that I have achalasia. My doctor had never seen anyone with a constricted esophagus, achalasia, a hiatal hernia and gastroparesis. He was extremely concerned and thought I was indeed suffering so much that he promised to help me with the gastroparesis first.

Now I want to share my Healing journey with gastroparesis. This was my plea; as a Spiritual person I pray everyday and continue to seek help with the right people at the right time.

My constant thoughts every day were, "Move please move", as the lack of peristalsis caused me so much pain. I was bedridden every afternoon for so many years, with no energy, feeling full and bloated with small amounts of food, sick and with nausea. Thus, I pleaded with Dr B. that even if I was a Scleroderma patient, I needed to try anything to help me. He told me of the Gastric Electrical Stimulator which he performed for so many patients and it had an 80% success rate. I wanted to trial it with much enthusiasm, but he was unsure as my fibrosis from the scleroderma in my stomach was an issue. Would the impulses get through the fibrosis?  He said he hadn't yet trialed this device on a scleroderma patient because of this fact.

Great news, on October 19th 2017, I was ready for the trialing of the stimulator. 
It was a short operation, and when I awoke I knew there was something that felt so right because there was no pain, no tension to abdomen pain. After only a week I knew it was working, letting the drugs dissipate from my body.  I was so happy! My whole body was different in a great way. My gastroparesis symptoms that I suffered for many years had gone.  No nausea, easy and regular bowel movements, normal stools, and no sugar crashes after 2-3 hours after eating. It was amazing!  I was feeling like a normal person even though I had pretty much forgotten how being normal felt. No abdominal pressure or severe bloating after only small bites of food. Of course I was eating healthy -- this was a must. 
But vegetables were my love and now I could eat them again with no repercussions of the fiber; everything now moved normally. I had normal regular hunger pangs and more energy within this 7 hour window of my mornings. In my eyes It WAS A Miracle!

March 27, 2018 I had my permanent Gastric Electrical Stimulator inserted. Thank you to Dr. B. and Medicare's financial assistance. I was feeling blessed and so grateful. 

It's been 2 months and more, and I am loving this device. It has changed my life. I now have 14 more miracles to face with all my other diseases, but I'm confident I shall win this health journey of mine. 

To help others and show my gratitude, I am now an advocate for gastroparesis. I have started a petition on Change.org to help others looking to obtain this device through Medibank Insurance. I want to give back to others and help them as my prayers were answered.

Thank you for being a part of my journey AGMD.

 Love and Light!
 
Margie is a young minded 55-year-old lady living in Perth, Western Australia all her life. Seventeen years ago, she was diagnosed with Crest Syndrome, and had Raynauds from the age of 27. Not long after Crest, she developed scleroderma and through the years had added about 12 other connected diseases. Some of these illnesses included heart disease and gastroparesis. Through her own personal therapies, she published a book entitled, The Gift Within. The book consists of her journal affirmations, dedications and heartfelt poetic expression and enlightenment with her challenging chronic illness. Margie loves helping others and is in the process of writing her second book. In addition, Margie serves as a volunteer for AGMD. With the time she has, she writes, reads often and has a website for her book which she blogs. Also she loves Ängel Card Reading as an added hobby. Margie is committed to being positive and finding a cure for scleroderma.
Personal Insights On Living With Diabetes
AGMD Series Of Interview With  Laura Schmidt


Our ongoing interview with Laura Schmidt will resume next month. 

We appreciate Laura sharing her personal experiences living with gastroparesis, the Medtronic Enterra Neurostimulator, Barrett's esophagus, type 1 diabetes, gastroesophageal reflux, neuropathy and depression.
July In Medical History


July 8, 1926 - August 24, 1004 - Elisabeth  K
ü
bler-Ross - was a Swiss-born psychiatrist, a pioneer in Near-death studies and the author of the groundbreaking book On Death and Dying(1969), where she first discussed what is now known as the Kübler-Ross model. In this work she proposed the now famous Five Stages of Grief as a pattern of adjustment. These five stages of grief are denial, anger, bargaining, depression, and acceptance. In general, individuals experience most of these stages, though in no defined sequence, after being faced with the reality of their impending death. The five stages have since been adopted by many as applying to the survivors of a loved one's death, as well.She is a 2007 inductee into the National Women's Hall of Fame.  She was the recipient of twenty honorary degrees and by July 1982 had taught, in her estimation, 125,000 students in death and dying courses in colleges, seminaries, medical schools, hospitals, and social-work institutions. In 1970, she delivered the The Ingersoll Lectures on Human Immortality at the University of Harvard, on the theme, On Death and Dying.

July 15, 1900 - October 1, 1969 - Thomas Francis Jr. - AAmerican physicianvirologist, and epidemiologist. Francis was the first person to isolate influenza virus in the United States, and in 1940 showed that there are other strains of influenza, and took part in the development of influenza vaccinesFrancis developed a polyvalent vaccine effective against both strains and conducted research that led to the development of antiserums for the treatment of pneumonia. In 1953, he was asked to design, supervise, and evaluate the field trials of the polio vaccine developed by his former protegé, Jonas Salk. The trials were of unprecedented scope and magnitude, involving about 1.8 million children from across the U.S., Canada, and Finland. On 12 Apr 1955, Francis announced that the Salk vaccine was indeed "safe, effective, and potent.

July 19, 1865 - May 26, 1939 - Charles H. Mayo - An American surgeon and philanthropist who co-founded the Mayo Clinic and Mayo Foundation. During the frontier practice of their father, Dr. William Worrall Mayo, Charles and his brother, William J. Mayo, began their medical training early, first by observing him, and later by assisting him on patient visits and with autopsies. After medical school, the family practiced together. In 1914 they built a clinic for the integrated group practice of medicine. In 1919, the brothers turned over the clinic, assets, and most of their life savings, to the charitable organization now known as Mayo Foundation.
July 28, 1925 - April 5, 2011 -  Baruch Blumberg - An American physician who shared with D. Carleton Gajdusek, the 1976 Nobel Prize in Physiology or Medicine for their discoveries concerning new mechanisms for the origin and dissemination of infectious diseases.  Jaundice stems from inflammation in the liver and is a symptom of different types of hepatitis. At the end of the 1960s Baruch Blumberg unexpectedly discovered an infectious agent for hepatitis B while researching blood proteins from people in different parts of the world. He demonstrated that the infectious agent was linked with a virus of a previously unknown type. The virus can be carried by people who do not become sick from it. These discoveries made possible both vaccines and tests to prevent spreading of the disease through blood transfusions.

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The Association of Gastrointestinal Motility Disorders, Inc. (AGMD) is a non-profit international organization which relies on membership dues, corporate sponsorship, grants, and the generosity of individuals for funding. In 2016, we commemorated our twenty-fifth anniversary. It was a time to celebrate, but also a time to evaluate if our financial needs could continue to meet our many future goals and programs.

We ask for your tax-deductible donations throughout the year as a way of showing your support and commitment to our organization and its important mission.
 
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AGMD serves as an integral educational resource concerning digestive motility diseases and disorders. It also functions as an important information base for members of the medical, scientific, and nutritional communities. In addition, AGMD provides a forum of support for patients suffering from digestive motility disorders as well as their families.  
Association of Gastrointestinal Motility Disorders, Inc. (AGMD)
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