- CASE FILE
I have been sick for over 7 years and after multiple surgeries and tests was diagnosed with idiopathic gastroparesis.
ABOUT THIS CASE FILE
My illness journey has been a long one. It started about 7 years ago when I was 25. My symptoms started with abdominal pain, discomfort when eating, and diarrhea. After seeing primary care, I was referred to a GI specialist (mainly due to my symptoms and family history of GI issues including colon cancer and Crohns). After the initial evaluation, the GI doctor recommended that I have a routine colonoscopy and EGD. After having both done, I learned that I had many colon polyps (that were benign), and acid reflux. I was assured by that doctor that there is no need for concern and that the findings did not explain my symptoms. He recommended that I follow up with Gynecology to have a work-up and see if there is any explanation for my symptoms. I have had a history of ovarian cysts so it made sense at the time to do so. After having a full work-up, I ended up having a total hysterectomy (2017)(based on the fact that it could alleviate some of the symptoms I was dealing with). So after suffering with increased nausea, bloating, vomiting, and increased abdominal pain after the hysterectomy, I was referred back to GI for additional testing. After following-up with GI, I again was put through the routine colonoscopy and EGD. There were a few more polyps and irritation to the esophagus and stomach. My GI recommended that I take daily antacids, probiotics, and Bentyl. After changing my diet and taking medications my symptoms worsened. Keep in mind I was in and out of the hospital over 30 times due to flares causing uncontrollable nausea and vomiting, with associated abdominal pain. I did have a CT scans done which showed repeated diverticulitis. After having been diagnosed with diverticulitis multiple times within 3 months and diverticulosis throughout my colon and hospitalizations, I was referred to GO surgery to have a lower anterior bowel resection (2018). After healing from bowel surgery it was apparent that my symptoms were worsening, as I was unable to eat or drink regularly without vomiting. The abdominal pain was really noticeable after meals or fluids. My GI specialist referred me to have a 4 hour Gastric Emptying Scan (June 2019) and after a week I got the results which showed a delayment in emptying and a diagnosis of gastroparesis. Unfortunately, my GI doctor was unable to offer much symptom control other than prescribing Phenergen, Zofran, and antacid. He was aware of the medication Reglan but because of the risk of side effects recommended against it. Instead he referred me to the local University Hospital to have a gastric electrical stimulator (gastric pacemaker) put in. He mentioned that although he wasn't sure of how it working per say, he knew that it had excellent results when it comes to idiopathic gastroparesis and controlling the nausea and vomiting. This disease has taken most of my quality of life so even though I have had past surgeries, I was willing to try anything. July 2019 I had the simulator placed. After going home, I was unable to eat or drink and was more nauseous than before with the pain being overwhelming. I was then placed in the hospital and after failed intravenous attempts at controlling my symptoms turned the device off. Almost immediately the spasms and nausea and vomiting subsided. The surgeon unfortunately had to break the news that although the device was functioning, it was causing overstimulation of my stomach. I am now waiting on surgery to remove the device. This brings me back to square one without much symptom control. I wake up everyday bloated, in pain, and have to fight the nausea and vomiting. I am not getting much nutrition so I am constantly fatigued and unable to do most tasks that involve strenuous work. Although I am aware that gastroparesis is chronic and there is no cure, I am hoping to get some better answers and maybe a treatment plan so I can regain some quality of life. As a single mom of a 10 year old active boy, not only am I battling an illness that I can't control, I have financial strain and emotional stress because I cannot work or even take my son to do activities like normal kids. I am hoping to get in connection with a specialist who has knowledge regarding neurogastroenterology and the possibility of finding the underlying cause. My doctors have ruled out diabetes, post-viral, and surgical reasons. There are options being offered such as gastric bypass and other invasive procedures, but the specialists have yet to understand my particular case. I am only able to tolerate small amounts of liquid and the only solids I can manage to keep down is potatoes. I am hoping by using this platform I can get some help and get some control back. Through research I have learned of many different possible treatments, but I fear that without knowing the underlying condition(s) causing my terrible symtpoms, I will continue to live life in my bed or bathroom. I ask that if anyone has any information that could lead me in the right direction please contact me, or if my case is accepted by this platform, I can find some kind of better solution. After this surgery to remove the device, I don't know how much more my body can take in terms of being operated on. I AM IN DIRE NEED OF ANSWERS AND POSSIBLE SOLUTIONS. My son is depending on me and I am holding on to hope that I can get some better treatment options. PLEASE HELP!!!!!