12 years ago today

12 years ago today is the 1st time I remember throwing up. I was diagnosed finally in 2011. I’m lucky to still be here. And still can’t find a good doctor that will help me. At my lowest I’ve weighed 108 pounds and I just turned 60 in July. I would be more than glad to answer any questions anyone has. It’s a horrible painful disease that needs a cure or at least more understanding doctors and better treatment. I have been called a drug seeker more than once. – Tammi Parker

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Demand Recognition

Please complete the form below to be included in our “Demand Recognition” campaign, which outlines some of the major changes we seek and the expectations we have for the medical community.

Digestive disorder/disease patients are frustrated by the lack of understanding, knowledge, and appropriate medical care surrounding our conditions, and it is time to make a change.

 WE DEMAND:

*Recognition of our humanity – We are not statistics, case studies, or room numbers. We are your fellow human beings, individuals with a passion and desire to live normal, full lives. We have families and loved ones with whom we wish to share a future. We have hopes, dreams, and goals we wish to fulfill. We have a chronic illness but we have not lost our will to live and thrive.

 *Recognition of our struggle – We endure hunger, pain, nausea and vomiting, bloating, weight loss/gain, early satiety, acid reflux, fatigue, and a whole host of other debilitating symptoms which often limit our daily activities and prevent us from living normal lives.  Further, we frequently battle exhaustion, depression, anxiety, feelings of worthlessness, shame, and guilt, and mental anguish beyond compare.  We long for understanding, compassion, empathy, and acknowledgment of the serious mental and emotional hardships which accompany our illness.

 *Recognition of our need for proper diagnosis & treatment – We seek standardized protocols and procedures for diagnostic testing as well as thorough explanations and follow-up regarding the results of such tests.  We seek suitable patient education and resource materials for all who are diagnosed upon the moment of diagnosis and urge you to provide patients with the latest knowledge of the nature of our illness, our immediate and future treatment options, emotional/mental health resources/referrals, dietary assistance, support resources, and instructions regarding follow-up and emergency care. 

 *Recognition of self-reported symptoms, patient knowledge, & right to self-determination – We have a right to be heard and understood, to be believed when we speak of our symptoms, to express our concerns and convey our own knowledge and experiences regarding our condition, to refuse and suggest treatments, and to share in decision-making concerning all aspects of our care.  We are individuals and should be treated as such. 

 *Recognition of the need for proper education of all medical professionals – We urge you to properly educate medical students and all physicians involved in our care through curricula, continuing education classes, training sessions at the point of care, and other means as necessary and suitable.  We encounter many in the medical field who know little of our illness and cannot offer us appropriate care.  We have a right to knowledgeable, professional medical personnel at all points of care.

 We petition you to usher in the changes we seek.  We deserve better – and we demand better.

Demand Recognition
Digestive disorder/disease patients are frustrated by the lack of understanding, knowledge, and appropriate medical care surrounding our conditions, and it is time to make a change.

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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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I had a Nissen Fundoplication

Hope Davis

Once upon a time, I was a successful model, dancer, cheerleader, beauty queen, actress and writer. After endless rehearsals and performances without rest, I developed a hiatal hernia. I was offered an operation that was to get me dancing again in 14 days time, I was to never dance professionally ever again.

To fix my hiatal hernia, I had a Nissen Fundoplication in 2004 that unfortunately was unsuccessful and damaged my Vagus Nerve. After a long fight battling for my life, my body started to collapse until I was under 5 stones in weight (5′ 10″ tall) and I was given 6 days to live. I gave up and left the UK for the USA to say goodbye to my brother who lives there as I was expected to die and to be frank, I wanted to die! Not long after I landed I was hospitalized in the USA and luckily for me, I was diagnosed with Gastroparesis and finally got the life-saving treatment that I needed.

However, once back in the UK, the medications that were prescribed to me did not exist in the UK. My health dwindled yet again as I lay dying. After 2 years hospitalized in many hospitals seeking help, we finally came up with a management plan and I had to rebuild my body from scratch and face my new reality living with Gastroparesis.

I have flares all the time, on average, when at it’s worst or life-threatening, I am hospitalized about once every 2 years. When in a flare (which for me is extreme pain and/or vomiting), I like to hug and squeeze my teddy for comfort, get into the fetal position and play very loud music as I ride it out. Some days are better than others. I take many medications daily to stay alive. My life is now part-time living and part-time suffering but with the help of friends and loved ones and the Gastroparesis support groups, we battle on. We are not victims, we are survivors and we fight our Gastroparesis battle like gladiators!

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I started to think it was nothing

Sheikinah Batchelor

I have always been a person who considered my health above average. I rarely got sick even though I had type 2 diabetes. This year right after ending tax season, I started to feel really sick. I wasn’t too worried except for the fact that I couldn’t eat. I started to think it was nothing and ignored it eating when I could. Finally, I wet to the hospital after almost two weeks of puking anything that touched my tongue. I was misdiagnosed and sent on my way with a 2k hospital bill. I started to take the medicine I was advised to take and things were getting worst. Soon, I wasn’t able to handle water. I was losing so much weight my friends were terrified for me. I was going to the ER once a week and then every two to three days. Finally, right before my birthday I was hospitalized when my blood tests came back strange. They ran test after test and came to the conclusion that motility was the problem. At 32, I was diagnosed with gastroparesis. I spent my birthday in the hospital before finally being released. I would later have a 50k hospital bill from that alone. I would go days with feeling better before the cycle of going to the ER would return and then I’d end up being kept again and almost placed in CCU due to the throwing up and my blood tests coming back abnormal. There needs to be a cure. This disease has made my life so much harder. I can’t work a full time job. I can’t ever be normal again and eat the things I love like salad and broccoli. It would be nice to one day enjoy those things again.

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