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
 
 March 2018
In This Issue
Quick Links
* Announcements
* Salvaging The Day - Melissa Adams VanHouten
* Saying Goodbye To The Pleasure Of Eating - Maryangela DeGrazia-DiTucci
* Helpful Resources And Tips - AGMD
* Digestive Motility Myths And Facts - AGMD
* March In Medical History - AGMD
* Hemorrhoids - AGMD

 

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Announcements

Nutrition Awareness Month

March is National Nutrition Month ®, a nutrition education and information campaign created by the Academy of Nutrition and Dietetics. The campaign focuses on the importance of making informed food choices and developing sound eating and physical activity habits. In addition, National Nutrition Month ® promotes the Academy and its members to the public and the media as the most valuable and credible source of timely, scientifically based food and nutrition information.

Registered Dietitian Nutritionist Day, celebrated on the second Wednesday in March, increases awareness of registered dietitian nutritionists as indispensable providers of food and nutrition services and recognizes RDNs for their commitment to helping people enjoy healthy lives. For more information, visit Eatright.org.  
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Autoimmune Awareness Month

According to the Autoimmune Society, more than 80 autoimmune diseases have been identified, and more than 300 medicines are in the research pipeline to treat these illnesses. The most commonly known autoimmune diseases include multiple sclerosis, rheumatoid arthritis and diabetes. Some autoimmune diseases may affect the functioning of the gastrointestinal tract, causing impairment to the esophagus, stomach, small intestine, or large intestine.  

You can find more information about autoimmune diseases at the Autoimmune Society or the American Autoimmune Related Diseases Association.

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March Is Colorectal Awareness Month

Colorectal cancer is the third most common cancer in the United States, but it is often preventable and treatable with early detection. The American Gastroenterological Association urges regular screenings beginning at age 50 for most patients. Those with an inflammatory bowel disease (IBD) - Crohn's disease or ulcerative colitis - have a heightened risk of developing colorectal cancer.  

You can find additional information and awareness tools on the AGA website  at http://crcawareness.gastro.org/ and at the US Department of Health and Human Services at https://healthfinder.gov/NHO/MarchToolkit.aspx.

Go blue for colorectal cancer awareness this March!



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AGMD Turns Twenty-Seven Years Old


In March 1991, AGMD officially became incorporated as a nonprofit organization. We are humbled and honored to be able to help and serve patients and their families as they journey through life with a digestive motility disorder. AGMD continues to strive in order to educate, advocate, draw awareness and promote research in this specialized area of gastroenterology. We continue to hold onto the hope and pursuit, that one day, cures will be found. You are all heroes to AGMD, and we remain eternally grateful for your continued support.


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NEW - AGMD Monthly Survey


AGMD welcomes you to participate in our new monthly survey series. Each month, results of our previous s urvey will be posted along with a new survey which people may participate in .


 
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The Results Of Last Month's Survey Are Here

Thanks to all her responded to last month's survey question!  Thus far, there have been 51 respondents. Our ongoing surveys encompass all types of digestive motility disorders, so we encourage you to continue to respond! 


How long did it take before you were diagnosed with a digestive motility disorder? 0-1 years = 58.82%, 2-5 years = 19.61%, 6+ years = 21.57%.


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In Remembrance Of Becky Till 

We are saddened to announce the loss of Becky Till, daughter of Linda Till, long-time member of AGMD. Her  GI complexities prompted their involvement with AGMD.

Becky was filled with determination and fortitude in the face of overwhelming challenges she endured throughout her life. She had an indelible spirit and inspired countless people. 

Nothing could stand in Becky's way, and she rose to challenges with grace, strength and might. She enjoyed skiing downhill throughout the winter when she was stable enough to do so and was a 4-time slalom champion.   She would have her TPN pump and lines tucked into her ski suit to keep them from freezing; her trach protected from the cold, but having to be attended to on the the ski hill in a complicated maneuver, her gastric tubes draining into the drainage bags tucked into one ski pant leg, her Foley catheter into the other pant leg!  She also loved to dance and was a member of an integrated dance troupe paired with an able-bodied dancer.
 
Her devoted, loving, and equally inspiring mom wrote the following words to Becky upon her passing: 

"Becky: Adorable daughter, how can we adequately capture the impact you have had on our lives? Beautiful, vibrant, and engaging - you had the most indomitable spirit, rising above everyone's expectations at very turn, whether it be acquiring skills that were deemed impossible for you, or fighting back from critical illness after critical illness, when so many believed it couldn't be done. And always, always blessing us with your captivating smile, catching us unawares, challenging and inspiring us all to see the possibilities and to appreciate the here and now. You showed us how to revel in even the smallest pleasures and to roar with driving determination into every adrenaline pumping adventure that could be found. You dove directly into our hearts, never doubting that you were welcome there....and as always, you were right! Our world is immeasurably better for having had you to love, and we wouldn't have it any other way!

"We will love and cherish you always, and miss you forever. Love, Mom, Dad and Jordan."
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If you have an announcement that you would like to submit to AGMD for publication consideration, email: info@gimotility-agmd.org. Please indicate "Newsletter Submission" on the subject line.
Salvaging The Day
By Melissa Adams VanHouten

Some days, I just seem to wake up in a bad mood. Perhaps I am fatigued, nauseous, or in pain - or maybe a jarring dream lingers in my memory. The truth is, I am not always sure why I feel the way I do. But, nevertheless, there it is, staring me in the face: a bleak start to the fresh new morning. Fortunately, over time, I have learned to employ several tactics which help alter my poor disposition and allow me to salvage an otherwise dreadful day.  Here are a few:
  
*Talk it out
Sometimes, it helps to chat with people who are not feeling down or angry; their good attitude is often infectious.  On the other hand, "venting" to others can be helpful as well.  When I feel I have been heard and understood, I am more willing to let go of my hurt, anger, and wounded feelings, and I am heartened by friends who reassure me they have been where I am and that my problems can be overcome.
  
*Spend time with pets
When people fail me, I always have my trusty African Grey parrot, Mr. Grover, to boost my spirits.  He accepts me as I am, and never judges, but is simply happy to see me. It is very nearly impossible to remain in a bad mood when he cheers me on with a bubbly, "You're cute," or, "I love you.  You're a good, good bird."
  
*Do something entertaining
A couple of hours spent listening to music, watching a movie, or with my nose stuck in a book either calms and soothes or invigorates and entertains me. Hobbies such as writing, crafting, coloring, puzzle-solving, or birdwatching fill the long hours of the day and keep my mind occupied with constructive thoughts.
  
*Change the scenery 
Sometimes, literally opting for a different view gives me... well, a different view!  A change in scenery often changes my perspective on whatever problem, hurt, or conflict is causing my bad day.  Sitting outside for a few minutes, taking a short walk around my neighborhood or a longer walk (when I am able) in the park or at my local zoo or gardens lightens my mood because it breaks my humdrum routine by exposing me to fresh sights. This change in physical perspective often results in fresh new ways of thinking.
  
*Keep busy with chores  
Even menial tasks distract me from my bad mood.  If I am paying bills, folding laundry, catching up on correspondence, or organizing my files, I am forced to concentrate on the task at hand and tend to forget the problems of the day.
  
*Concentrate on others 
When I focus on helping others, especially those in my support groups, I think less about my own difficult circumstances.  Attending to the needs of others who are struggling, and who could benefit from a listening ear and kind words, further reminds me that, despite my illness, I have a purpose and that life is still meaningful.
  
*Indulge
If I feel particularly down, treating myself to a cup of gourmet coffee or tea, breathing in the aroma of a sweet-smelling candle, or indulging in a short nap or long, luxurious bubble bath often relaxes me, relieves stress, and elevates my sunken mood. 
  
*Analyze the situation
When all else fails, and my poor emotional state stubbornly refuses to change, I generally engage in some good old-fashioned self-analysis and evaluate my state of affairs a bit more carefully.  I ask myself if I am lonely, tired, frightened, angry, or worried, and I contemplate whether there is anything I can do to "fix" the situation. At times, my bad mood stems from something a little more serious - ongoing issues which I have long ignored and which must be sorted out - and unless I get to the root of those problems and resolve the underlying circumstances which have caused them, I cannot seem to progress.  Some matters simply demand attention and cannot be disregarded or pushed aside forever.  
  
Changing my frame of mind from "down" to "up" is not always easy. But taking small measures to address and alter my mood makes for not only a happier day but also for a healthy overall state of mind.
  
Melissa Adams VanHouten is a dedicated wife and mother who was diagnosed with gastroparesis in February of 2014. She 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.  As an AGMD volunteer and creator and administrator of several online support and advocacy groups, she now spends her days advancing the cause of those who struggle to live with the sometimes devastating and life-altering effects of gastroparesis.  It is her fondest desire to empower others to advocate for awareness, better treatments, and, ultimately, a cure.


Melissa Adams VanHouten is a dedicated wife and mother who was diagnosed with gastroparesis in February of 2014. She 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.  As an AGMD volunteer and creator and administrator of several online support and advocacy groups, she now spends her days advancing the cause of those who struggle to live with the sometimes devastating and life-altering effects of gastroparesis.  It is her fondest desire to empower others to advocate for awareness, better treatments, and, ultimately, a cure.
Saying Goodbye To The Pleasure Of Eating
By Maryangela DeGrazia-DiTucci

Whenever the topic of "Saying Goodbye to the Pleasure of Eating," is brought up during AGMD programs and conversations, it tends to generate heart-wrenching emotions. Eating is a daily part of life, but many patients with digestive motility diseases and disorders live with the uncertainties of the symptoms and what foods can perpetrate an exacerbation. Some may only be able to eat a very limited number of foods, many consuming an extremely small repertoire of what they call "safe" foods. Some may battle in their minds the strong desire to eat versus the consequences resulting from that moment of eating pleasure. For others, it may be consuming extremely small amounts for food and for some patients, it's total loss of the ability to eat resulting in tubal feedings. No matter where you are in your life, the inability to enjoy food and all that it encompasses can be a tremendous loss.

As a person of Italian descent, the focus on food and eating was a huge part of my world. As a child, I always looked forward to cooking and eating. I experienced hunger, had the ability to satisfy my hunger by eating and I had the option of eating what I liked, how much to consume, and nibble whenever I wanted to. These were choices that were made merely based on my appetite, social setting and particular food preferences. I enjoyed dining out, the aroma of foods, and entertaining with the prime focus being on food. At the time, I totally took for granted all of these normal experiences.
  
But as the symptoms of chronic idiopathic intestinal pseudo-obstruction invaded my life, little by little all those pleasures were taken away and a long process of mourning began.

Every bit of food triggered debilitating symptoms and yet, still I tried to eat anyway. Some days I would consume food merely because the hunger was so great, but other times, it was because there was a food being served that I loved and couldn't pass up. But the symptoms would escalate, and my repertoire of foods began to diminish. Misdiagnosis after misdiagnosis, from so-called "stress," it's all in your head," "spastic colon," to "anorexia nervosa," I spent many years trying to defend the fact that I really wanted to eat, but the symptoms were excruciating, especially upon consumption of food. It took five years before the official diagnosis was revealed.

I can remember the extreme sadness that I felt each time I thought about food and eating. Life went on for others, but I would just stare at the food, battling in my mind. Should I try it knowing the consequences that one bite will cause me? Or should I take every ounce of will that I have and decline?
  
One minute I would eat a particular food and the symptoms would be somewhat tolerable yet another time, I would eat that same type of food and be on my knees in pain. Fear battling hunger or the desire to eat anything plagued through my mind.

During meals, especially the holidays, as our family gathered together at the dinner table, I would observe the sorrow and pain in their eyes as well. It was a devastating time for us all. It was as if a white elephant had entered the room. It was unspoken but observed and everyone tried to go on as if nothing had changed, except, for the anguished looks that we tried to hide, but was clearly etched of all our faces.

Eventually, I realized that what I was experiencing was a mourning of the loss of my ability to enjoy food, eat and socialize and that chapter in my life of the enjoyment of eating was coming to a close. After 40 years of illness, I no longer have any appetite. I no longer eat in public; however, I participate joining in social events by sipping weak tea. I have tried to make it as comfortable as possible for my family, although worry and sorrow are still clearly evident on their faces, but we have created a "new and unique normal" so I could participate in life and all the precious moments we have together. Although even today, the very second food enters my body, my symptoms escalate to a perpetual agony, I'm mentally at peace. The act of eating in my life has become my job ... the job I do in order to survive.

But I have had many years to accept and integrate all that has happened to me, and the mourning process for that part of my life is done. I have accepted the loss and learned to adjust my life accordingly. Not an easy feat and one that took years to obtain. But I am far happier and beyond grateful for still being alive after all these years of illness.

There is a huge emotional and physical component in having to say goodbye to the pleasure of eating. It's a gradual process. For some, it may be only temporary, for others it may be learning the discipline of only eating certain restrictive foods and in other cases, it may be for life. Wherever you are in your journey, know that you are not alone. Be patient, be forgiving, never give up, hold on to hope and know that AGMD truly understands and is here to help. Even though your struggles may be of mammoth proportion, you are alive and all that you are going through you can share with others so that they too will learn, understand and gain more awareness of life with a digestive motility disorder.   
Helpful Resources



Helpful Tips 

  • Remember what works for one person may not work for another
  • There may be days when you may be able to eat a particular food and tolerate it and the next time you eat that same food, you may experience symptom exacerbation
  • Nutrition is paramount
  • If you are able to eat, try eating slowly
  • Eat small amounts of food at one time
  • Juicing may be beneficial
  • Visit a dietitian specializing in digestive motility disorders
  • Be patient with yourself
  • Mourning the loss of the ability to enjoy eating is very real and a process that many patients go through
  • Keep your doctors informed about what you are going through
  • You are not alone and others truly do understand
  • Share with others so they may learn, understand and gain more awareness of life with a digestive motility disorder
Digestive Motility Myths And Facts

Myth: Colon cancer only affects men, especially older men.
Fact: Colon cancer affects both men and women at the same rate.

Each year about 140,000 people across the nation are diagnosed with colon cancer and more than 50,000 die from the disease, according to the Centers for Disease Control and Prevention.

 Dr. Ramrakhiani says the notion that this cancer only affects older men is simply untrue.   "People often mistake colorectal cancer for prostate cancer. "

Sanjay Ramrakhiani, M.D., is a gastroenterologist and interventional endoscopic specialist with the Palo Alto Medical Foundation.

  Reference

March in Medical History


March 17, 1881 - August 12, 1973 - Walter Rudolph Hess, a Swiss physiologist who  shared  (with António Egas Moniz ) the 1949 Nobel Prize for Physiology or Medicine for "for his discovery of the functional organization of the interbrain as a coordinator of the activities of the internal organs." In 1948, Hess devised suitable techniques to implant electrodes in the brains of rats, from which he could locate areas of the brain associated with certain instincts. Through his research, he identified how particular areas of the brain (and especially the hypothalamus) are involved with the functioning of the body's internal organs, and areas associated with autonomic functions such as sleep, hunger or defense mechanisms.

March 7, 1938 - David Baltimore - American virologist who shared the  Nobel Prize for Physiology or Medicine in 1975 with  Howard M. Temin and  Renato Dulbecco. Working independently, Baltimore and Temin discovered  reverse transcriptase, an  enzyme that synthesizes DNA from RNA. Baltimore also conducted research that led to an understanding of the interaction between viruses and the genetic material of the cell. The research of all three men contributed to an understanding of the role of  viruses in the development of  cancer.             

March 12, 1862 -April 15, 1919 - Jane Arminda Delano -  The central figure in uniting the work of the Nurses' Associated Alumnae (renamed the American Nurses Association in 1911), Army Nurse Corps, and American Red Cross. From 1909-1912, she served as president of the Nurses' Associated Alumnae and became superintendent of the Army Nurse Corps. She resigned her army position in 1912 to give full time to the Red Cross. After 1905, the year the Red Cross was reorganized, she worked closely with that organization and the Nurses' Associated Alumnae to develop a nursing reserve for the Army Nurse Corps. Through her efforts, over 8,000 well prepared nurses were available when the United States entered World War I. Perhaps her greatest achievement was helping supply 20,000 professional nurses to meet the needs of that war. She died in Europe while in wartime service.

March 26, 1911 - April 20, 2003 - Sir Bernard Katz - German-born  Australian physician and  biophysicist, noted for his work on  nerve physiology. He shared the Nobel Prize in  physiology or medicine in 1970 with  Julius Axelrod and  Ulf von Euler. He was  knighted in 1969. The major fields of research of Professor Katz include: studies of nerve and muscle, especially of the physico-chemical mechanism of neuromuscular transmission.

March 27, 1845 - February 10, 1923 - Wilhelm Conrad Röntgenrman -  mechanical engineer and  physicist, who, on 8 November 1895, produced and detected  electromagnetic radiation in a  wavelength range known as  X-rays or Röntgen rays, an achievement that earned him the first  Nobel Prize in Physics in 1901.           
Hemorrhoids

What are hemorrhoids? 
Hemorrhoids, also known as piles, occur when veins in the lower rectum and anus become swollen.

What are the different types of hemorrhoids?
There are two kinds of hemorrhoids, external and internal. External hemorrhoids develop under the skin of the anus while internal hemorrhoids form in the lining of the anus and lower rectum.

What are some the causes of hemorrhoids?
  • Too much pressure on the veins in the pelvic and rectal area
  • Diarrhea or constipation also may lead to straining
  • Pregnancy
  • Being overweight
What are the symptoms? 
Symptoms of hemorrhoids depend on the type of hemorrhoid. Symptoms may include:
  • Anal itching or irritation
  • Swelling around anus
  • A lump near your anus which may be sensitive or painful
  • Pain or discomfort
  • Painless bleeding during bowel movements, (small amounts of bright red blood on your toilet tissue.) 
How are hemorrhoids diagnosed?
Your doctor can often diagnose hemorrhoids based on your medical history and a physical exam. Your doctor will check the area around your anus, perform a digital rectal exam, and may use procedures to look inside your anus and rectum.

How common are hemorrhoids?
Hemorrhoids are very common. Nearly three out of four adults will have hemorrhoids from time to time. 
According to a 2007 review on hemorrhoids published in the Journal of the American College of Surgeons, it is estimated that about 10 million people in the United States report of having problems with hemorrhoids giving it a prevalence of 4.4 percent of the population.

What are some of the treatments for hemorrhoids? 
  • Topical over-the-counter or prescription strength hemorrhoid cream, gel, suppository or medicated pad
  • Stool softener
  • Sitz bath or sitting in the tub filled with warm water
  • Apply ice packs
  • Simple incision and drainage
  • Doppler-guided hemorrhoidal artery ligation
  • Rubber band ligation
  • Sclerotherapy
  • Infrared or electrocoagulation
  • Hemorrhoidectomy
  • Hemorrhoid stapling
References
 

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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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