When Your Stomach is broken. Susan’s Personal Story with Gastroparesis
It started out subtly. It began with slight nausea that progressed into severe nausea and vomiting. I found myself facing an exhausting cycle of severe nausea, extreme abdominal pain, and early satiety that made eating feel like an impossible chore rather than a comfort. In the beginning, I desperately hoped it was just a passing virus or stress, but as the days bled into weeks, my body made it clear that something was fundamentally wrong.
Securing a definitive answer proved to be a long, exhausting, and deeply isolating road. Before my diagnosis in 2021, I went to the emergency room about ten different times, desperate for help that never came. During the fifth or sixth visit, an emergency room nurse told me that this was all in my head, psychological, and that I needed to go and seek therapy—that there was nothing wrong with me. That completely broke me coming from an Emergency Room nurse who is suppose to be kind and compassionate.
I still refused to give up. After the ninth or tenth emergency room visit, I refused to leave because I was in so much pain and was being totally ignored. The doctor allowed me to stay because I said I was just going to come back again.
They kept me and did an endoscopy, but the doctor reported that I had IBS, which I knew I had something more severe and that was not it at all. So then they left it with a diagnosis of IBS and just sent me on my way.
After a three month wait to see a gastroenterologist, he told me I needed to go to the emergency room for immediate testing and hospitalization. I had lost 25 lbs and looked pale like a walking zombie.
When I arrived at the emergency room, I tested positive for COVID and double pneumonia on top of my severe gastroperisis, which still was undiagnosed at the time. The doctors did not want to keep me because I had COVID but there was a very kind and compassionate nurse that really listened to me. She advocated for me to be admitted and because of her, I was admitted. I was then placed in a room alone because of COVID. It was the loneliest experience I have ever had. I was not allowed visitors, nurses would barely come into the room to check on me, I was not allowed to open my room door or walk anywhere because of my COVID diagnosis. I was starving for food that I couldn’t eat. I took a sip of water and that brought on vomiting and made the pain more intense.
The turning point finally came during a gastric emptying scan while hopsitalized at Monmouth Medical Center, Southern Campus, which proved my stomach was clearing food at a drastically delayed rate. Hearing the word “gastroparesis” brought a massive wave of relief—validation that the pain was real and that I wasn’t making it up. But it also brought sadness that there was no cure.
I was then transferred to Robert Wood Johnson University Hospital and remained there for three weeks. Upon arrival, I was provided with a small Bible that I requested, and I held onto that through the entire process. While there, I was placed in a tiny, dark isolation room for COVID where we were not allowed to open the doors, the TV didn’t work, and I was left completely alone and in so much pain.
When I finally recovered from COVID and was moved to a regular room, I was able to at least see a window and some light. Towards the end of my stay, I was discharged and gave my little Bible to the scared woman in my room awaiting heart surgery. She clutched it and cried in gratitude, and it felt wonderful to help someone so much when I was in such pain.
Following my diagnosis, I underwent G-POEM (Gastric Peroral Endoscopic Myotomy) surgery, and my stomach function significantly improved over the next few months. For four beautiful years, the relentless symptoms faded into the background, and I finally had my life back.
In 2025, after my second re-diagnosis, I had just started a brand new job with Community Hope helping veterans in crisis and was so excited to start. As soon as I completed training, the severe symptoms began again, and unfortunately, I ended up losing the job that I had been so happy to have been accepted for the position. Falling back into the familiar cycle of nausea and pain after several years of relief was utterly devastating.
Since being re-diagnosed, my life has become a whirlwind of medical interventions. I have spent the last year putting my body through everything science has to offer, desperately trying to replicate the relief I once had. I have had test after test so much blood work done, undergone pyloric Botox injections and a pyloric balloon expansion to force my stomach to open. Neither helped. I have had a temporary gastric stimulator placed to test my nerve responses, and I underwent a major robotic pyloroplasty which did not seem to help either.
Enduring procedure after procedure is physically exhausting and emotionally draining. Everything I have done, I have had to advocate for myself—with gastroenterologists approving me for so many tests, procedures and surgeries because I kept continuing to say, “Let’s keep going. This procedure didn’t work, let’s do another one, let’s do another one until this is fixed because I am not giving up. I am too young. I have too much to live for.”
At this current point, I barely eat food. Standard motility medications like Reglan and Domperidone have completely failed me, leaving me with almost no therapeutic options. My daily intake has shrunk to a strict survival routine: a single protein shake in the morning, a bit of watered-down Gatorade, and possibly a few bites of mashed potatoes or shredded chicken at night. That is all my body can take. Because my stomach refuses to tolerate liquids normally, I am constantly fighting severe dehydration. Living in a perpetual state of physical starvation and dehydration is profoundly exhausting, and the toll it takes on my mind is incredibly heavy and mentally draining.
Right now, I am awaiting a Social Security determination after going through medical testing again to prove that I have a disability, and hopefully I will be approved. Although it won’t be very much money at all, a little money right now is better than nothing, even though I have nothing.
The emotional weight of this regression is overwhelming, but the hardest part is often what I choose to keep hidden. When I am around friends and family, I consciously put on a smile. I swallow the pain and hide the physical toll because I don’t want them to look at me and feel pity or sorrow. More than anything, I want my children to have a peaceful, normal upbringing, free from the shadow of my medical struggles—even now, as they navigate their own lives as young adults.
Masking this level of suffering is exhausting, but it is a choice born out of a very strong love to protect the people I love most. Sharing this story is the one place where I can finally let the mask fall, bringing visibility to both the non-linear reality of severe gastroparesis and the hidden emotional labor of living with it.
As of now, while the procedures and tests continue, I try so hard to not give up. I have more bad days than good. I completed an Alimetry test 2 weeks ago that had no answers. The doctor is in the process of scheduling me for another endoscopy. (I have had 6 already) He is suggesting that I try the permanent gastric stimulator. I completed the test with the temporary gastric stimulator which gave me no relief, so I am hesitant as to why he thinks it would work when the test stimulator shows it did nothing.
Please feel free to reach out. I have almost completed every surgery possible and been prescribed every medication on the market, even from out of the country. After all of this, I will continue to fight. Life is so precious. I pray to be here when my children get married and have kids. That’s my goal.
No one should have to face this alone – it is an isolating road we travel. Don’t give up. I know the pain is so overbearing that it makes every part of your life so difficult. We are strong. We have to be or this illness will completely consume us. It has already consumed so much of our prescious time and dreams.
It would be amazing to have a cure for gastroperisis. But, unfortunately, all we can do is try more, advocate for ourself more. I know how hard it is to self advocate when you feel so sick that you cannot even get out of bed.
Never surrender. It is so hard when your crying everyday in pain and because of what this illness has taken away from you.
There are little things I do to try to get through every hour of everyday. Making the best of this is not an option. You have to be your own best advocate. Don’t settle for no. Continue to pray that things will get better. Some of the procedures I went through might work for you. Continue to keep moving with hope that these procedures and surgeries may work for you.