My son Christopher runs feeds at night. I’m grateful for the option to provide him nutrition. He’s a warrior.
Hi my name is Miraya Johnson, I have had excruciating abdominal pain since I was in 7-8th grade. I was dismissed by so many doctors. I have seen 5-6 GI specialist & they all told me the same thing Irritable bowel syndrome also known as (IBS), as well telling me my symptoms are only in my head. They never saw me throwing up from when I woke up in the morning to when I closed my eyes at night. I am sick from day to night with pain. They never saw me being bedridden and missing so much school due to the excruciating pain, nausea, & vomiting. They never questioned my malnourishment. They never cared when I told them my hair is falling out & that my bones hurt. They never cared about the countless ER visits week after week, month after month, day after day. After losing hope for so long. Because of the doctors, they would never listen to my everyday symptoms.
One day, recently I was scrolling through tiktok and found some lady talking about Gastroparesis & I immediately looked up the symptoms and called my GI & he told me It was impossible for me to have it & I said I don’t care run the gastric emptying study and it came back positive for very severe Gastroparesis. So we booked an appointment for the best doctor in the US & I was so excited! We met with my new Motility Specialist in Cleveland Ohio and he was amazing! Although the test was positive sometimes the test can be a false positive so we did a smart pill test and it came back positive for gastroparesis (stomach paralysis) & a slow colon.
Every time I eat I get sick, because food will sit in my stomach for 20 hours and a normal person would be 4 hours. I have no safe food or liquids. Even water causes me to have indescribable pain. My pain constantly changes from all over my abdomen to wrapping around my back. There is a variety of types of pain gastroparesis puts me through including, burning, twisting, dull, sharp, as well as pain that makes me feel like I’m being gutted alive, or when it hurts my stomach to even breathe.
I couldn’t be more grateful to finally have an answer! After being turned away and passed from doctor to doctor. Nobody wanted to look outside the box. I am 0.16% of the world that battles Gastroparesis. I always had minor stomach issues as I was growing up but when I was 13 is when my symptoms took over my body. I am now 20.
Gastroparesis almost took my life last year because I couldn’t hold anything down & my specialist wanted me admitted to the hospital but my primary turned me away. This is not acceptable , we are only human. We deal with constant battles going on for years inside our bodies to be pushed away from doctors. There needs to be more awareness brought to this disease. It not only takes a toll on our bodies but the people who see us sick every single day. We have an invisible illness and doctors need to recognize it.
My illness is an everyday thing for me, not an hour by hour but a second by second disease that will control what I can and can’t do. I cannot work due to this illness. But trying my hardest to complete college. I’ve tried countless diets & medications and even surgeries. Nothing helps my Gastroparesis. I am in bed 95% of the time I just want my life back. That’s why we need to help raise awareness and find a cure, I will not be silenced by the doctors nor by Gastroparesis, I will be heard!
I’ve had Gastroparesis for 23 years and not only have I fought this fight but my family has fought with me and I am so lucky to have them by my side.
The battle is so difficult for each and every one of us every day and we all have different experiences. Malnutrition, dehydration, constipation, diarrhea, weight loss, weight gain, diabetes, vomiting, nausea, pain, bloating. We go through so many tests, procedures surgeries and medications just to find some relief.
There is no cure for Gastroparesis but there are studies out there trying to find a way to help us to through this horrible disease.
God bless all you warriors
Combatting GP is TOUGH . This year alone I’ve been hospitalized more time then I can count. In 2018 I was hospitalized over 15 times . We may look “OKAY” but we’re NOT . Everyday is a struggle and we just want people to hear us , understand us and get educated . Everyday is a battle but I always remember that pain is so REAL, but faith is also . We want people to hear us ROAR, because we are warriors fighting silently everyday . We all don’t look like what we go through .
I am Leslie Friend Smith. I am a 51 year old woman who suffers from Gastroparesis. Gastroparesis has taken away my quality of life and left me practically bed bound. I went from being an active person who has worked full time all my life, to getting fired from my job for missing too much work from being sick with uncontrollable vomiting and excruciating stomach pain. When I tried to explain to my employer what was wrong with me, I was told that if I couldn’t handle a little stomach ache, that they had no need for someone like me with their company.
Everyday I get up and try to do housework, I will get as far as doing dishes or sweeping the floors, and I am completely exhausted. My body feels like it just ran in a marathon, my stomach will go from being flat to looking like I am 8 months pregnant, and I will have excruciating pain to where it even hurts to touch all over my stomach. The swelling used to go down over night by resting, but now the swelling is constantly there. I can’t eat regular food that most people take for granted. I can only eat maybe once a day because eating causes pain and nausea with sometimes vomiting. So when I can find something to eat that doesn’t make me sick, I will eat that same thing everyday until I get tired of it out of the fear of trying something new.
My doctor claims that he understands what gastroparesis is, but I cannot get him to understand the devastating truth of what it is doing to my body and my quality of life. I am literally stuck propped up in my bed all day long because I am in that much pain! I go to the hospital to try to get pain relief, and the doctors there think your there seeking out drugs for a quick high and label you as a drug seeker. Pain management doctors are just as bad. I wouldn’t wish this on my worst enemy, but just once if they could feel what I do maybe then they would understand!
Not only does Gastroparesis effect my body, it also has caused major depression to where my psychiatrist has diagnosed me with Post Traumatic Stress Disorder (PTSD). It’s been very depressing trying to understand why the doctors won’t help me, why do they just leave me to physically suffer in pain, like it’s okay to do. It’s not okay. It’s unacceptable but it seems that the harder I try to express how much pain that I am in, the more they will label me as a drug seeker. Why can’t they understand that people die from complications of this disease! People are getting so depressed from not getting help and getting so desperate because of the pain we feel every day that they are going as far as taking their own life to be free from the pain.
If I could get the doctors to understand the impact that Gastroparesis has on my life, I would want them to understand how much suffering it causes. And how much it’s unacceptable to allow a human being to continue to physically go through this. You feel alone and scared, and your family and friends if they are not supportive they figure if you were really sick your doctors would do something and they aren’t so it’s just in your head.
I hope that one day the doctors are more willing to help relieve the suffering. I hope that more research can be done with Gastroparesis to where there is maybe one day even a cure. Every day I pray for this, and everyday I pray for my fellow sufferers that we can be pain free and have some sort of normalcy in our lives.