It has changed my life dramatically

I’ve had gastroparesis since 2010. It’s changed my life dramatically. Surgery to remove my gallbladder because my stomach wouldn’t move food. It just sat there. Tons of nausea, weight loss, abdominal pain…daily. I had to change how I eat food to more liquids, smaller meals, which wouldn’t have been as big of a deal by itself but because of comorbidities is highly challenging to nigh impossible. My diet is already limited due to Crohn’s disease and lack of a colon. The only FDA approved medication that worked for me was Reglan and that has a black box warning for tardive dyskinesia, which is unstoppable shaking for the rest of your life. I took reglan for 7 years due to no other options. If I didn’t take it I’d be so nauseated I couldn’t eat and my stomach would take days to empty one meal. My doctors didn’t think reglan worth the risk. I now take a medication from the UK called domperidone that I have to order online because it’s not FDA approved. It works better than nothing. In a country where there are multiple drugs for the same health concern, why is it that there is nothing in America I can take. Why were there only 2-3 options and none worth the risk due to potential and actual side effects? I implore you to push forward with research. Many people suffer idiopathic gastroparesis. It’s not our fault that we have it and there is no cure. Once the vagus nerve stops communicating that’s it. EDS, Lyme Disease, GI disorders have correlation with gastroparesis. As I learned in graduate school, correlation does not equal causation. Please find a cause. Please find a cure.

Submitted by:  Dr. Sarah Cooper

Loading spinner

Thanksgiving 2010 While I Was In Army Basic Training

Hey Y’all, I just thought I would introduce myself. I’m 26 and live in Troy. I got sick after an emergency appendectomy on Thanksgiving 2010 while I was in Army basic training. I was able to fight off the inevitable and did four years in the Army during which I did a tour in Afghanistan. When I got back, my health really started
declining.

I fought and fought and fought for an answer, but it took just over 7 years to get diagnosed with GP. I had a gastric emptying done in 2013 or 2014, which showed delayed transit but nothing was ever done, besides a short trial of reglan, which didn’t help. My main symptoms were nausea, vomiting and pain. It go so bad, that i had to give up my dream career and was medically retired from the service.

...
Loading spinner

Thanksgiving 2010 While I Was In Army Basic Training

Jacqui Jenkins
Jacqui Jenkins

Hey Y’all,

I just thought I would introduce myself. I’m 26 and live in Troy. I got sick after an emergency appendectomy on Thanksgiving 2010 while I was in Army basic training. I was able to fight off the inevitable and did four years in the Army during which I did a tour in Afghanistan. When I got back, my health really started declining.

I fought and fought and fought for an answer, but it took just over 7 years to get diagnosed with GP. I had a gastric emptying done in 2013 or 2014, which showed delayed transit but nothing was ever done, besides a short trial of reglan, which didn’t help. My main symptoms were nausea, vomiting and pain. It go so bad, that i had to give up my dream career and was medically retired from the service.

It took awhile to find a good GI doctor that actually believed me – i was told it was all in my head, because I didn’t even fit into the “catch all” diagnosis of IBS. I was diagnosed with Crohns due to some physiological changes on a colonoscopy, but they retracted that diagnosis when the biopsy was negative (i still believe i have crohns as well). I finally had a smart pill done in January and my doctor was shocked when she got the results. Just shy of 200 hours for the pill to pass through my entire digestive system. So i’m just a teeny bit slow 😉.

I don't look sick you don't look stupid

Because we had tried pretty much every conservative treatment, they told me i would just have to live with it, using scopolamine patches and zofran for nausea and dilaudid for pain. It got to the point where i was going weeks without eating, and was in and out of the ER getting fluids, because anything that went in my stomach came back up. My GI doctor even told me at one point that she couldn’t do anything drastic until my blood work was “bad enough.” So i saw a nutritionist and explained my whole ordeal.

I tried a GP friendly diet and that still didn’t work, as even the smell and sometimes the thought of food would make me sick. My hair thinned, so I shaved it and I was having memory problems and confusion, which got so bad that my neuropsych tests came back with my score being in the range of dementia. I talked to my nutritionist and asked about a feeding tube. I considered it my last hope and a last resort.

I got a NJ tube, and it wasn’t two days and I was feeling better than I’ve felt in years. I had that a total of almost five weeks when I finally got my J tube and I’ve had about 85-90% relief of my nausea and vomiting. I also got a port shortly after the J tube, because i have pretty much no veins left, so that helps with fluids if i need them, since i don’t drink any water.

I am currently going to college, which is definitely a challenge with the health issues I already struggle with. I have an Associates degree in Biotechnology, during which I worked in a neuroscience research lab studying Gulf War Syndrome, Traumatic Brain Injury and Epilepsy. And now, I am working on my Bachelor’s degree in Biology with minors in Forensic Lab/Investigative Science and Medical Lab Science. My heart belongs in the lab.

I hope to meet some great people here! It’s always easier to have people that understand what you’re going through.

Hope y’all are doing good. Remember, a day at a time!

Loading spinner