I have had gastroparesis for about ten years. It is very severe and I only am able to use tube feeding. I have spent months in and out of the hospital. My teeth are destroyed from the constant vomiting and my life is drastically changed. I’m no longer able to work or socialize as before. Any movement forward on treatment and cure could literally be life changing.
I have had gastroparesis for 7 years and every year hope that a drug is found that will get rid of it. Feeling like you have a stomach bug 24/7 is no way to live. I currently take an acid reflux drug called Dexilant that my insurance has decided I don’t need 2 pills a day, but only one.
I’ve lost most of my friends as I can’t go out for dinner and drinks. The holidays are horrific because it’s all good food food and I can’t eat it.
I’m lucky I can still work but many days I sit and hope I don’t vomit all over a meeting table. Vacations spent at home where I can have some bland carbohydrates
I’ve lost weight and now have gained weight based on all the carbs I eat. No fruits, no vegetables, no meat.
Doctors laugh at us calling us drug seekers for stomach pain, which all I ever want is anti nausea meds. We are anemic, tired all the time. This is not the life I signed up for. I’d rather have cancer because some can be cured.
I’ve written to Ed Markey, Catherine Clark, Elizabeth Warren- I get form letters in return. Everybody is out politicing and we are literally starving to death.
This bill is being reintroduced again, as it has in the past.
What happened to empathy and compassion ????? What do I have to look forward to? Nothing. My being has been diminished to “we don’t care about you”
Please help us. People are dying every day. It’s not normal
I was finally diagnosed with gastroparesis in 2014, after 10 years of hell. I also was diagnosed with colonic inertia. Both of these mean my stomach and intestines don’t work. In 2016 lost my large intestines and had 3 months with an ostomy. I also was given all my nutrition from TPN. I also needed multiple infusions of magnesium and potassium, and blood transfusions, because my hemoglobin dropped extremely low. I have spent many months in the hospital and came close to dying so many times, because of the disease and due to having picc lines in me many infections that went septic. Hospital personnel have made mine and many like me life hell, because they are not taught about this disease. Everything offered to help is hit and miss and come with with risk of side effects. Please help us find treatments. Too many have already lost their battle with this disease. This disease is another that is invisible. Meaning our insides are dying, and always in pain, and our outside looks good. We aren’t lazy, looking for attention, in our head that so many are accused of. We are strong women, men, and children who deal with so much and try to keep going until the body gives out again. Thank you for any help you give us.
I was diagnosed 12-16 with GP. It has completely changed my life for the worse. I was running my own business and going to nursing school. I had to quit school first because I couldn’t keep up with all the illness. I then had to cut my hours back which I am single mom of 3 so the financial burden is dire. I have been to several doctors, specialists, and had so many testing and medication trial and errors. I am left with two disabilities due to this disease and treatments so far. The options we have are very limited and our approved medications all have serious side effects and risks. I am 47 years old and my life and my kids lives have drastically changed. Due to lack of research , knowledge, and treatments my quality and quantity of life are severely diminished. I strive so hard to fight my body everyday in hopes just to see my twins graduate high school. I’m not sure the damage to my body and heart from chronic malnutrition and dehydration, is going to last too long. PLEASE help us by getting this bill through. It is a matter of life and death. Starving to death is very painful in itself. I do not believe I will be around for a cure , my hope is for minimal better treatment and research or cure this awful disease .
I have been suffering from Gastroparesis for the last 7 months and in that time have lost 45 pounds and the ability to lead a normal life. Millions suffer from this disease, which causes debilitating nausea and pain, keeping us from being able to eat or having enough energy to work and raise our children. I am an elementary school teacher, and I love my job, but I currently can only work 4 days a week and, on days I work, I have to lay down any time I’m not with students to conserve my energy. I’m terrified that one day I won’t even be able to work at all. I also feel guilty using up my energy working and not being able to play with my own children. Please consider sponsoring HR 3396, a bipartisan bill that will raise awareness and increase funding and research. We deserve the hope of a cure.