My Illness Journey Part 6: Paralyzed Stomach
Hi I'm Kayla and I have a pacemaker for my stomach.
I bet most of y'all didn't even know they made those. Well neither did I until late last year. Around the same time my neuropathy began improving, my stomach died, because of course it did. No really it just up and stopped stomach-ing.
I got referred to a Gastroenterologist and got what is affectionately known in the medical field as a "double dip" (aka a colonoscopy and endoscopy at the same time, aka they stick a camera up your butt and down your throat). Lovely. That showed nothing so on to the next test: a smart-pill endoscopy to show my small intestine. I literally swallowed a camera while it was flashing. It never made it to my small intestine, it just sat in my stomach for 12 hours. From this I was diagnosed with Gastroparesis. That translates to stomach paralysis.
I was referred to Motility Specialist at USC. They have a whole Gastroparesis center over there so they were incredibly helpful and full of options. Once my stomach died, I unintentionally lost 35 pounds in less than 5 months. It was insane. I couldn't eat anything besides baby food and frozen yogurt, and I could barely keep down water. I was malnourished and essentially starving to death. I ended up in the ER for fluids because I was so dehydrated, then the USC doctor prescribed at-home saline infusions so I got 3 bags of saline per week since I couldn't consume enough water orally.
I got a Gastric Emptying study to confirm the Gastroparesis (in this test you eat a radioactive egg and sit around for 4 hours... fun!). Once that test came back, I was scheduled for surgery to implant a gastric pacemaker/neurostimulator and in the same surgery the doctor performed a pyloroplasty which opened up my pyloric sphincter so food could empty from my stomach more easily. The surgery lasted 4.5 hours and was performed by a robot which is pretty cool actually. The recovery was not so cool. I ended up spending 2 nights in the hospital, during which I broke my non-vomiting streak of 12 years. I literally hadn't vomited since I was 8 years old. All that work went down the drain. Anyway we spent a few months fiddling with the pacemaker settings and 7 months later it's finally manageable. I now go in to see my surgeon bimonthly to get the pacemaker checked and to adjust the settings. I will have to get the batteries changed via surgery every few years, but for now I'm doing ok. At least I can consume water orally.
OK I'M FINALLY DONE WITH POSTING PARTS OF MY JOURNEY AND NOW I CAN POST MORE INTERESTING STUFF! Thanks for sticking with me through all these parts I just wanted to split it all up in easy-to-read portions but also keep it all together in terms of uploads. I can't wait for you all to see what cool blog posts come next!