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.
