Month: August 2020

I had a Nissen Fundoplication

Posted on by Gastroparesis: Fighting For Change
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!

Loading spinner

I started to think it was nothing

Posted on by Gastroparesis: Fighting For Change
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.

Loading spinner

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.

Loading spinner

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.

Loading spinner

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

Loading spinner