Year: 2020

I never heard of it until diagnosed

Posted on by Gastroparesis: Fighting For Change
Martha Koch

I was first diagnosed in 2018. I never even heard of it until they said that was what it was. I started vomiting really bad in February of 2019 and I went back and forth to the hospital for 3 months until I lost 50 pounds and had to be put on a feeding tube. I was put on an nj tube that had a bridle and that broke after 2 months of having it so we had to get it stitched into my nose so it would stay in place. I had my nose stitched 3 times before I told them after 3 months of having it I wanted a gj tube. So we switched me to one in August 2019. Before April 2020 I had went through 21 gj tube exchanges and procedures. I for the last 2 months of having the gj tube I had a lot of pain. So I found a doctor to send me to a surgeon to have a separate j tube and g tube placed. I got those tubes on April 1st and I have had since then except an exchange of my g tube and that was for pain. But these tubes had lasted me 4 months and some days. About 2 months after getting the j tube placement I ended up back in the hospital with severe nausea, pain, and vomiting. So we took me off my j tube feedings to see if giving my stomach a break would help but almost a week there I was still nauseous and vomiting. So we put a port in and started me on TPN . TPN has given me so much strength and mobility, I feel like a new person. I am on IV zofran which is the only nausea medication that works and IV Protonix. But I some how got an infection of MRSA staphylococcus infection in it and had to have it removed and I am waiting to get a new one so we can start TPN again. I am hoping I can find something to help me eat a little more without being 2 nauseous and getting sick. This disease sucks but I have joined support groups and have found a lot of friends who actually understand what I am going through.

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The last two months have been the hardest in my life

Posted on by Gastroparesis: Fighting For Change
Adelyn Lyon

It’s August 1st, which means it’s the start of Gastroparesis Awareness Month. I’m now 1 year and 9 months into my journey, and it’s been a harder year than I ever expected (and that is after losing 60lbs my first year). In the last year, I’ve had to go on leave from teaching, had 5 feeding tube exchanges, been hospitalized 23 days total, and had too many blood draws, IVs for hydration, doctor appointments, procedures, and ER visits to count. (Not to mention trying to parent and homeschool during a pandemic through all of this).

The last two months have been the hardest of my life, with a new flare that will not end and is keeping even my feeding tube from working properly. I’ve lost the 15 lbs I had managed to regain in the fall, plus an additional 8, making my loss 23 lbs in less than two months. I will likely keep losing weight while we figure out a solution and am now getting close to being underweight. I have a big procedure this Wednesday which might be my chance at finally feeling better and could use all the positive thoughts that it will be successful. This has to work because there aren’t really any other good options left. My doctor basically told me that my choices might be between using opiates, which would likely cause a dependence and may end up hospitalizing me bc I’m unlikely to tolerate withdrawal safely, or TPN, nutrition through my veins, which has a high risk of blood or heart infections, severe organ damage and sepsis. There should be better options. I’m only 34.

My situation isn’t unique among people with gastroparesis. And without a cure or funding, we will continue to be treated like drug seekers, or accused of having an eating disorder, or told we need to be more positive, or told we just need a therapist bc we’re “too young and sweet” to have a feeding tube, or refused care because we “seem healthy” despite how awful we feel from prolonged starvation (I have been told all of these things by doctors). We deserve respect from the medical community, to be taken seriously, and to have real options and care for a better life.

After over a year of hard work, our House Bill for GP Awareness only has 22 co-sponsers out of 435. Please, please help by supporting our bill. It will give us the awareness and funding we need to live. Please help save lives.

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Diagnosed after 7 years of symptoms

Posted on by Gastroparesis: Fighting For Change
Josh Tewsley

I am asking my legislator to support this bill on behalf of myself and the many other Gastroparesis Warriors across this country who fight Gastroparesis and it’s debilitating symptoms on a daily basis.


Gastroparesis, or paralysis of the stomach is a rare disease that affects only a small percent of the U.S population and not many more than that worldwide.


I was officially diagnosed with Gastroparesis in January of 2019 after enduring symptoms of the disease for more than seven years. Because Gastroparesis is considered a rare illness, knowledge of it is severely limited. Many people, including myself go misdiagnosed for many years before being officially diagnosed with the disease. Many doctors have never even heard the term Gastroparesis, let alone it’s life altering symptoms. This disease does not only go misunderstood in the physician community but also with our families, friends, co-workers, and bosses. Because Gastroparesis is on the inside, often times we may look ok on the outside leading to ridicule and judgement from other’s. We may look ok on the outside, bet are literally starving on the inside. We may look ok to others but we had just been literally throwing our guts out moments before. We may look fine to other’s but we had just gotten out of the hospital because this disease knocked us down.


I am supporting this piece of legislation because of the fact that that person is me. I have had my life stolen right out from under me. I can no longer work because of Gastroparesis. Because of the life altering consequences of Gastroparesis I can no longer be the husband or the father that I strive so hard to be. I support this legislation because there is currently NO cure for Gastroparesis and treatment options are severely limited with many treatments not even helping the symptoms of this disease at all. We are a large group of misunderstood people fighting for our lives. We have cures and treatment for cancer and other illnesses that affect American people throughout and while I am not downplaying those diseases at all, I want to see Gastroparesis research to be better funded so those who come after us can have a legitimate chance of leading a normal life.


Lastly I advocate for this disease because it is the right thing to do. I want people to understand what we go through every day and what risks are associated with Gastroparesis. My message is simple, let’s find a cure, let’s find better treatments for Gastroparesis however we cannot do any of that without support and increased funding.

Thank you very much,
Joshua Tewsley
Louisville Kentucky resident
Gastroparesis Advocate

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GASTROPARESIS AWARENESS MONTH PHOTO CONTEST

Posted on by Gastroparesis: Fighting For Change

In honor of Gastroparesis Awareness Month (August 2020), we are giving away a set of our GP dog tags via random drawing to 2 community members. 

In keeping with our #WarOnGP #GPRevolution theme, we ask that you submit a photo demonstrating how you fight GP.  Be creative!  We love to see your awareness shirts, ribbons, signs, beautiful smiling faces, family members, friends, good times, hardships, and all other displays of support for Gastroparesis Awareness Month. 

We will collect all photos for possible use in our August 2020 awareness campaigns, and we will award 2 entrants a set of our dog tags as a prize.  Winners will be determined through random drawing and will be announced in this group and via participant e-mail.  This contest closes at noon on July 27, 2020.

To enter, please complete the form below.  International members are eligible for this contest as well.  Please note that submission grants us permission to use your photos in awareness-related campaigns, including graphics and displays on social media channels and on our website. We will not accept photos placed in the comment section or those sent through private message or e-mail. Limit one photo per person.

Thank you so much for your participation!  Best of luck!

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They removed my large intestine, gallbladder and appendix

Posted on by Gastroparesis: Fighting For Change
Beverly Mello

I was diagnosed when I was forty years old. They removed my large intestine, gallbladder and appendix. I lost my hearing, my job, my friends and almost my marriage. This isn’t a easy illness on a family. It isn’t like cancer because it isn’t well known so people judge you. The worst part is not seeing my granddaughters because I am too tired and sick and weak all the time. I am 58 years old. I am very tired and at this moment I have pancreatitis acute. I am so sick of suffering.

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