Gastroparesis: Fighting For Change > Articles by: Gastroparesis: Fighting For Change

Author: Gastroparesis: Fighting For Change

We created this website to provide the public with additional information regarding Gastroparesis. It is our goal to connect users with our Facebook advocacy group, “Gastroparesis: Fighting for Change.” Our Gastroparesis: Fighting for Change Facebook group was formed to unite people with Gastroparesis and other digestive and motility disorders to work for change. It is not a typical GP support group, as we do not discuss personal medical issues. Rather, we established this as a place where members can discuss ideas regarding our mission, vision, goals, needs, services, and resources to work toward solutions. So if you want to make a difference for our GP community, we encourage you to share your ideas! Additionally, we need you to help us fight for changes in legislation! Also, you can help raise funds! Finally, you can help spread awareness! Please join our main group. We would love to have you! You can find links to our Community Page and our Advocacy Group on our Resources Tab. In order to accomplish our goals, we will be sharing many ways you can get involved on our Campaigns Tab.

Cherylann Silva

Posted on July 12, 2022July 12, 2022 by Gastroparesis: Fighting For Change

My name is Cherylann Baggett Silva. My problems started when I was 15 years old and would get terrible sound like aches and nausea and my mom would bring me to the doctors over and over and over again. They did so many kinds of Testing and just told me I had reflux. I went on to live a miserable life.

In 2014I had a stomach emptying test that showed after six hours 50% of my food was still left in my stomach. So many brutal tests were done before that that were so painful and horrible to go through and withstand.. The name of the disease was gastroparesis. That’s what I was told. I was given no information on the disease. I had severe pain and vomiting all the time and nausea 24–7. For 3 straight years in a row the nausea never went away at all. I’ve lived with it from the time I woke up until the time I went to sleep. Nothing would help it. I just wanted to die. No doctor would help with pain medication.

Since I was diagnosed I have had aspiration pneumonia 29 times. The cardiologist said the next one could kill me. That is very hard to live with. I never smoked a day in my life time but I am on oxygen for all activity, housework, and any kind of walking because my oxygen stats will go to the low 70s. This is from all the scarring in my lungs due to the aspiration pneumonia’s. Not only is my stomach and small intestines paralyzed I lost my colon in 2018 and I’m wearing an ileostomy bag that Is irreversible. I’ll have it for life. And all these years while dealing with everything else and all my other illnesses that gastroparesis has spiked and caused I have still suffered with severe vomiting, extreme pain, nausea and sick to my stomach.

I was going through old medical records and I’ve found a medical record from 1991 that said I had a stomach and teen test back then and it showed I had slow gastrointestinal dysmotility. I was suffering with this way back in 1991. I can’t even count the number of doctors I went to and the test I had done. And the hoses put down my nose. I had so many endoscopies I lost count. They called me the endoscopy queen at the hospital. And the fatigue that you get from this disease is unbearable. It is not thinking it is malice. I Take Adderall to keep me awake two times a day and it doesn’t even last three hours. When I wake in the morning it feels like I haven’t even slept. It takes almost 2 hours to shower and do my hair and Get dressed to go anywhere and by then I am flat on my back and unable to go. I have missed important weddings and anniversaries and functions and family dinners and parties. I’ve lost all my friends and my family. Nobody wants to have anything to do with me anymore.

I suffer so badly every day and I have had Botox with dilation I have had other methods of treatment I am on five different medication’s and still no relief. What is it going to take to find a cure for this disease. I also throw up every night in my sleep. It does not wake me up. My daughter comes over every morning to clean me up and check up on me. I am so afraid I am going to choke one night and that is the end of me. My sister just had cancer and she had pain medicine and she could not figure out why we were not given any pain medicine in the condition that I am in. I explained to her that every doctor gives me the same excuse that narcotics slow down your system and since our Stomach works slow they can’t give it to us. To me this is bull crap. My stomach barely works.

There was a 14 year old girl who drowned herself in the tub a few weeks ago because she was in too much pain. She committed suicide. There was a young man in so much pain he seeked out drugs and what he bought was laced with something dangerous and he overdosed that night. All because he was into much pain and was just trying to seek some help. What does the government want us to do? Is this what they want us to do? Is this what it has to come to. I have had so many gastroparesis sisters and brothers text me they just look at their bottles of medication and want to take them all and end it. We are in pain! We are suffering all day long! We are nauseous all day long! We are sick to our stomach all day long! We have no quality of life! We don’t live mama we exist and that’s the bottom line.

I don’t know how much more I can take. I have been laying on the couch all day long suffering and missed a function this evening. That heating pad is not helping, ice is not helping. I write 2/200 people a month with my illness most of them who have nobody in their life. I’ll send out packages to little children who suffer so severely, all they do is cry and they don’t understand why they have tubes down there nose, tubes coming out of there stomach. I have been in communication with a family faraway who’s little girl has been suffering since four months old and now she is four years old. I am also in communication with a nine year old boy who lives close to me who came all the way from another country and traveled four countries to get to a Boston hospital to get a chance to live with this disease and now it has caused him so many more diseases and taking his bladder and taking his colon and he needs kidney transplants.

I will not see a cure in my lifetime but I will fight every day for these kids and others with this illness. I am tired of going to the emergency room and being sent home because doctors don’t even know what the disease is. I go when I tell them I need to be hydrated and they send me home and don’t hydrate me after throwing up for three days nonstop. What is it going to take? Please help us. All we want is to be treated like others, like people with cancer or other diseases that doctors know about and emergency room doctors know about and know how to treat us and help us with our pain and nausea and vomiting. I can’t take it anymore.

Shawn Bowers

Posted on July 12, 2022July 12, 2022 by Gastroparesis: Fighting For Change

I was diagnosed with Gastroparesis in 2007/2008. I was prescribed multiple medications throughout the years, and none have helped. Have had more than 10 endoscopic procedures done, 2 with botox injection. The 1st time with botox was in 2008, it did help, I was able to eat without pain, and still able to eat whole foods.

Unfortunately nothing about Gastroparesis is explained by the Gastroenterologist, they pass it on to a nutritionist or a dietician. The insurance does not cover that profession, and it cost way too much for my budget. So I am left on my own to do research and trial and error with foods/drinks. That can be a setback at times, because once I get sick from something I ate, drank or medications, it takes days and sometimes more than a week to get my stomach to be calm again. I have been to 10+ specialist and to no avail, I am getting worse in my health, these doctors know it and they see it. I weigh 82lbs, am malnourished, malabsorption, my food intake is very small and limited. The last GI office I went to in May, they didn’t have my records, never seen me before, and the nurse practitioner prescribed Creon. She never asked if I was allergic to pork, (the enzymes are made from pig) and I had severe reactions to the meds. Another setback. She offered feeding tubes, and I opted out of that as I can still chew and swallow and keep food down. That seems to be the go to for these GI’s, but there are many complications with feeding tubes. I have suffered enough with pain all throughout my body, and I don’t want to deal with more than I can handle right now.

Ever since I’ve been diagnosed with Gastroparesis, the doctors have diagnosed me with more symptoms: gastritis, gerd, fibromyalgia, heart disease, hernias, low blood pressure, low heart rate, dermatitis in scalp, underweight, malnourished, malabsorption, asthma, mild hypertension, anxiety and depression, brain fog, the list goes on year after year. What I don’t understand, if we don’t digest food correctly, how can the medications digest correctly? I don’t think they do, and that’s why no medications help with the symptoms. We should not be prescribed PILLS of any forum. My family and I have watched my life decrease slowly in the last 5yrs, I have no quality of life as I am not able to work, go to family functions, take care of my plants, I have no friends anymore, most times don’t even have the family. Everyone gets tired of hearing how sick I am or how much pain I’m in . I’ve seriously tried to take the positive road, and I wind up feeling defeated every time. When I speak of being in pain, it’s something that is not easy to explain. I suffer extremely with left chest pains, this has lead me to multiple ER visits and no explanation. Some days, the pain is in my chest, my arms, my legs, my head, my back, I used to be able to take Tylenol or ibuprofen for the pain, until 2018 I acquired 3 bleeding ulcers and was rushed into surgery to stop the bleeding. At the time in the ER, the head doctor accused me of being an alcoholic and even told his students “this is what alcoholic syndrome looks like” . I haven’t had a stitch of alcohol since 2015 and that was only a glass of wine. That doctor was wrong and that should of never been said! The ulcers came from taking ibuprofen everyday for pain on an empty stomach.

I have been seriously mistreated by the GI’s. I was yelled at and told I wasn’t allowed to cry, another GI yelled at me and said if I get cancer it will be my fault for going to the ER too much. I have absolutely NO TRUST in the Gastroenterologist profession. They are the most uncaring, heartless, and not very professional. I’ve had GI’s tell me there’s nothing more they can do, I’ve also had a GI say Gastroparesis wasn’t real, it was all in my head and to go see a psychiatrist. This disease is hell! I don’t expect sympathy but empathy would be fitting! This disease leaves us feeling alone and that no one cares. I’ve read so many comments from GP’ers they want to give up, I feel the same. When you wake up everyday, and don’t know how you will feel, can’t make any plans to do anything because most likely I would have to cancel at the last minute.

I’ve done a 360 with my life, my eating habits, what I drink and trying to exercise, watching videos of nutrition and vitamins and supplements the body needs, I have spiral notebooks that are full of all this knowledge I’ve acquired, and although I’ve found some things that do help me to survive for the day, it’s not enough to keep me alive much longer. I’m tired of crying and begging God to help me. Why won’t these specialist help? Why won’t they get better educated, not just about the disease but about the patient. We are not just a number in a book, we are human beings with a heart and soul and feelings, we deserve to live too! Some days I have so much hope, because I did something right with food or the vitamins intake and I’m feeling a little better, and then the bad days come and they outweigh the good days. The nausea, bloating, vomiting was the beginning stages of GP, I’m near the end stages and I only have the nausea now. Too damn scared to vomit, the last time it gave me a myocardial infarction. I often wonder if FEAR had alot to do with not getting better. This life with Gastroparesis is a lonely road that should be less traveled! I’m ready to Fight to Live!!!!

Proclamations – August 2022

Posted on July 7, 2022August 16, 2022 by Gastroparesis: Fighting For Change

Each year, the Gastroparesis community reaches out to their elected officials requesting August be declared Gastroparesis Awareness Month. We are so grateful to the community members who ask for the proclamations as well as to the elected officials who grant the requests.

State Proclamations

City and County Proclamations

Fort Payne, Alabama - courtesy of Chana Carter

Belleair Bluffs, Florida - courtesy of Deb Sulllivan

Rome, Georgia - courtesy of Chana Carter

Indianapolis, Indiana - courtesy of Melissa Adams VanHouten

Tahlequah, Oklahoma - courtesy of Amber Simon

Centre County, Pennsylvania - courtesy of Micki DeBrasky Hartranft

Killeen, Texas - courtesy of Tonya Coleman Henry

Noah Shaw

Posted on July 2, 2022August 4, 2022 by Gastroparesis: Fighting For Change

Freezing and sweating from flare at the same time while becoming a gazillion shades whiter than on a normal day.

GASTROPARESIS AWARENESS MONTH 2022

Posted on June 27, 2022August 16, 2022 by Gastroparesis: Fighting For Change

Every year, Gastroparesis: Fighting for Change supports Gastroparesis awareness by engaging in a themed campaign designed to highlight the issues, needs, and goals of our community. This year’s theme is #GPWontSilenceMe.

As part of this effort, I would like to collect photos, quotes, experiences, and/or stories demonstrating what you would like doctors, researchers, legislators, policymakers, the media, and family/friends to know about living with GP and/or discussing the changes we, as a community, need to see.

This is your chance to speak! The goal is to help the outside world understand that this is more than a tummy ache. They need to see the true effects of GP on your life — physical, mental, social, financial, and spiritual — and they need to know what measures and actions you believe would help.

To submit, please share your entries in the form below. Collection will be ongoing, so there is no set deadline… but the earlier, the better, as I will need to prepare graphics and other materials by August 1, 2022.

Thank you so much for your help!