Fighting for my life while being treated like a guinea pig

I am a 41 year old wife and mother of 3. I was diagnosed with Gastroparesis 6 years ago. I have had 27 surgeries due to my illness. I have been on Social Security Disability for 4 years. I was tube fed for 3 years and have recently just had to have an NJ tube inserted . I am fighting for my life while being treated like a guinea pig and yet there is no hope around this disease. While I was tube fed I had to have 15 surgeries to either change feeding tubes or because of complications from the tubes themselves. I honestly felt like the feeding tubes were going to kill me faster than my actual disease. I made the choice to have my feeding tubes removed. Now social security is saying I am basically cured because I made the choice to have the tubes removed. I am on the verge of loosing my disability benefits and my medicare because of this and yet I just had to have a NJ tube inserted because I was unable to maintain weight and nutrition after my last surgery in May which replaced my 3rd Gastric pacemaker. I cannot work and I am now tube fed again. Life is traumatic and hard. I now have a home health nurse and dietitian along with 6 other specialists and yet I am nowhere near cured or healthy. Depression has overwhelmed my mind and body as I have tried to navigate through this disease with what seems like no help or support from my doctors or the government. Please help me!

Submitted by:  Tyanna Sanders

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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.

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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!

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I Had No Idea What Gastroparesis Was

Ashley Boman

I was diagnosed with Gastroparesis in 2007 at the age of 17. My story, however, started long before I was diagnosed. One of my earliest memories is of being woken up by my parents in the middle of the night laying in puddle vomit. This happened very frequently as I grew up.

Throughout elementary and middle school I was in the nurse’s office daily with the worst stomach aches you can imagine. I was told repeatedly by the school nurse and my parents that it was just nerves. No one would listen to me, so I suffered. Most of the time I tried to hide the pain and sickness because I was tired of being told it was all in my head. As I grew older and started high school thing continued worsen with my health. I was in and out of the ER and urgent care on a weekly basis, vomiting daily and losing weight rapidly.

It wasn’t until I was 17 and could pay for my own healthcare that I was finally referred to a Gastroenterologist. After many tests and procedures, the doctor told me that I have Gastroparesis. At that time, I had no idea that those words would forever change my life. The doctor wrote me a prescription for a medication that I was told to take 30 mins before every meal. It was supposed to help my stomach motility; it didn’t. It did however cause me to have constant panic attacks and muscles spasms. When I returned to the gastroenterologist to follow up, he was frustrated and told me that if the medication I had tried didn’t help, there was nothing more he could do for me. I still didn’t realize what Gastroparesis was or how it would affect my future. I left not knowing that I needed to be treated for this.

Over the next 10 years I got married and had two children. When I got pregnant the first time I was 21 years old and weighed 97 pounds. I was vomiting daily before I got pregnant and the pregnancy only amplified the problem by 1000. I was actually losing weight instead of gaining any, for the first half of my pregnancy. My body was so small and frail that my son almost died during birth. The doctors performed an emergency c-section and were able to save his life. My second pregnancy was just as difficult and ended in another c-section.

I was a young mother to two children and I was still constantly in the hospital. My husband is in the military and deployed twice during this time. I had to move back home and in with his parents because I wasn’t able to care for my children alone. I still had no idea why this was all happening to me. I just knew my body was really sick. At this point my liver started to enlarge and get inflamed. I spent Christmas in the Intensive Care Unit with an enlarged heart, liver and fluid around multiple organs. In 2015 I moved back to my hometown of Albuquerque. My husband switched over to The National Guard and trained to be a paramedic so that he could better take care of me. After moving back, I set up my care with a whole team of specialty doctors at my local university hospital.

Finally, in December of 2017, after suffering my entire life, I was diagnosed yet again, with Gastroparesis. The difference was that this time I had a husband in the medical field and a team of doctors to explain to me exactly what that meant. My results came back saying that my Gastroparesis is severe and that my stomach is partially paralyzed. Paralyzed to the point that only a few months after my second diagnoses I was fitted with an NJ enteral feeding tube (A tube that goes up your nose and down through the GI Tract, bypassing the stomach and into the Jejunum). I have tried every medication that is on the market for Gastroparesis, to no avail. Currently there are very few treatment options. The medications all have terrible side effects and only work for a small number of people. I am diagnosed with Idiopathic Gastroparesis, which means they don’t know what caused it. In my case, my Gastroparesis is progressive and only getting worse.

I am now 28 and 100% dependent of my feeding tube. I have a consult in a month to have my feeding tube placed permanently. If my feeding tube ever fails me, my last option will be TPN (IV nutrition). Gastroparesis does not discriminate, it affects people of all races, ages, shapes and sizes. We recently had a 4-year-old in our
Gastroparesis community die from this horrible illness. We need help to find better treatment options and a cure. No one should be forced to starve to death.

Thank you for taking the time to read my story. I really hope it gives you a little insight into the Gastroparesis world and the struggles we face.

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