This story was emailed to me and I wanted to share it, because I want people to know:
A. They are not alone
B. Everyone’s GP is different
C. Your story matters
My Gastroparesis Story
I am 40 years old and diagnosed with gastroparesis at age of 34. I am short in statue and 75lbs overweight.
I wanted to share my story as I never heard of gastroparesis until I was diagnosed with it 6yrs ago.
In 2013 I kept feeling sick as I wanted to throw up all the time as I felt like I had a rotted gut. I had horrible sulfur burps and oh-man did they stink. It was embarrassing to go anywhere with them. I finally was tired feeling so miserable I went to the ER, they did a CT scan and said my intestine was twisted. I went into surgery that day for a laparoscopic surgery. They found that my intestine was not twisted, but they did remove some scar tissue. I am not aware of where the scar tissue was.
After I had the surgery I started to have severe back pain on the right side and it’s still there today. About after a week of having surgery all my symptoms came back. My primary doctor had me go and have an upper endoscopy procedure. After the procedure I met with the GI and his findings was I have gastroparesis. He said for me to be on a low fat, carb, fiber diet. To not eat lettuce as it is the hardest to digest and to either drink smoothies or purée my foods.
No other information I was given as far as what I can or not eat.
I went online to see what foods are simple to digest as my stomach would take a 2+ days to fully digest. I did good for a little bit with the change in diet, then started to have issues with keeping food down or I would wake up jumping out of bed before aspirating. (Hate that acid burning in the throat). Luckily enough my body feels it coming to wake me up so I don’t choke or it going back into my lungs.
I went back to the ER as I was not feeling good again and my stomach was extended and very tender. The general surgeon gave me some Reglan to help empty my stomach for a week until I went back in for another endoscopy procedure. This time I didn’t eat hardly anything for 2 days before the procedure, when they where finishing up and pulling the camera out I had aspirated. I had no idea when I woke up I was wet, coughing, and shaking.
I started to have sudo seizures, next thing I knew I woke up in ICU in another hospital about 60 miles from the one I originally was in. The general surgeon confirmed my gastroparesis was causing the stomach pain and swelling. After I was in ICU, my primary doctor said not to take Reglan as it can cause seizures and we don’t know why I had the seizures in the first place. All the Nero test came back normal, so it was determined by a Neurologist doctor that they are Sudo.
My primary doctor then prescribed me with linzess, which helped. It wasn’t ideal for the gastroparesis, but it was a shot in the dark. Over the past couple of years I have paid attention when my gastroparesis is giving me trouble to make adjustments in my diet. The week I have ovulating I have to be careful of what I eat. I will get migraines and nauseous along with my gastroparesis acting up. The gastroparesis also acts up right before and beginning of my menstrual cycle. None of my doctors know why I have gastroparesis as I do have type 2 diabetes, but it’s managed. I do have polycystic ovary syndrome.
I believe my gastroparesis is caused by hormone imbalance, but my doctors just shrug it off like I am crazy. I was referred to a surgeon regarding the gastroparesis and I was told by the surgeon the only way to fix gastroparesis is by gastric bypass, since it creates a new hormone within the new stomach. I did have my gallbladder removed in Nov 2009.
Last April 2018 I started sleeping with oxygen as my oxygen levels dropped significantly during sleep. I use mouth devices for mild sleep apnea. Which some doctors don’t get that sleeping with a mask on (sleep apnea machine) and you have jump out of bed because you vomit in your mouth doesn’t work. However my SO2 drops so I need oxygen. I had Pulmonary Function Test done in September and found my lungs are being restricted. Not sure of the reason yet, I have noticed over the last few months when I eat my SO2 drops. Not sure if it’s because of the gastroparesis causing my stomach to bloat compressing on my lungs. I will be having another PFT test in a couple more months.