What Reasearchers Should Know About Gastroparesis

A Patient’s Perspective

ResearchMatch collaborated with Melissa Adams VanHouten, Public Policy and Outreach Director of the Association of Gastrointestinal Motility Disorders (AGMD), and Maryangela DeGrazia-DiTucci, Founder and President of AGMD, to talk about what patients living with this condition would like researchers to know.

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Ostomy Awareness Day 2020

In celebration of Ostomy Awareness Day, Debbie Popp, from Gastroparesis Fighting for Change, interviewed a group of ostomates, asking them to share their journeys of living life with an ostomy.  We are proud to present this video in the hope that it will help others understand they are not alone in their struggles and in the celebration of their triumphs.  A special thank you goes out to all who participated in this video!

There are many ostomates across the world who join together in support groups, lifting each other up and listening while we vent.  Nobody is alone in this! 

There are many reasons one might need an ostomy, including:

  • Crohn’s Disease
  • Ulcerative Colitis
  • Cancer (colorectal, bladder, cervical and more)
  • Diverticulitis (perforation or abscess)
  • Birth Defects (Hirschsprung’s, FAP, Spina Bifida)
  • Abdominal Trauma
  • Motility Disorders (Colonic Inertia, Chronic Intestinal Pseudo-obstruction)
  • Irritable Bowel Disease

Whether an ostomy is the result of planned or emergency surgery, temporary or permanent, it is a lifestyle change.  Many ostomates attest that having an ostomy saved their lives or gave them better quality of life.  Initially, it can be difficult, and there are many challenges to overcome, but there is no need to face it alone.  The stigma of having an ostomy is changing with every voice that speaks out!

Today, on Ostomy Awareness Day, celebrate by joining one of the many Facebook events:

From Crohn’s & Colitis Foundation: Join us at 12 p.m. ET on October 3 for a special Facebook Live in partnership with the United Ostomy Associations of America (UOAA). We’ll be discussing all things ostomy and awareness related with Gina Day, BSN, RN, CWON, and IBD patients Chealynn Feaster and Ryan Van Voorhis. Watch the chat live: www.facebook.com/ccfafb.

From United Ostomy Associations of America:  This year we are celebrating the 10th Anniversary of National Ostomy Awareness Day. Join with UOAA and the entire ostomy community on Saturday, October 3, 2020 to spread the facts about life-saving ostomy surgery and stop stigmas once and for all. #OstomiesAreLifeSavers #ostomyDay2020 Check out the many exciting virtual events such as the Run for Resilience Ostomy 5k, sponsor events and many great activities planned for the day. You can make an impact. Go Live on your own Facebook Page at 7 pm ET and tell your friends how ostomy surgery saved or changed your life and help smash stigma! Participate in the event that starts at 5 AM EST:  https://www.facebook.com/events/313284406630170.  

Sources: Crohn’s & Colitis Foundation, United Ostomy Associations of America

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Ask an Expert

Gastroparesis: Fighting for Change will be conducting an interview to discuss the G-POEM (Gastric Peroral Endoscopic Myotomy) with Dr. Alexander Schlachterman from Jefferson University of Philadelphia, Pennsylvania. We invite you to ask questions about this procedure in advance of our discussion. We will include as many of your questions during our interview as we can, but if your question does not get answered during the interview, we will do our best to follow-up on the topics raised.

Please check this page frequently for the video interview (to be posted upon completion of the interview) and follow-up information.

You can read more about the G-POEM in this article: Gastroenterology & Hepatology December 2019 – Volume 15, Issue 12 

UPDATE: Thank you for your interest in G-POEM.   Questions for this expert have been closed, and the interview has been conducted.  Please see our "Ask an Expert" tab under "Events" to view the interview.   Thanks again!

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