Day 239

I have tried the extent of this blog to keep the gross factor out of it, but let's face it gastroparesis is gross.  Just a little while ago I ate knowing what it would do to me, but I want you to understand what eating does to someone with full blown GP. First and almost immediately after eating the nausea takes over to the point that you cannot concentrate on anything else no matter how hard you try. Then the pain takes over normally followed by bloating like you are 8 months pregnant within 5 minutes. If you happen to be in public people mention your non existent pregnancy because it looks so real. Even though you are on a consistent dose of pain medication  your body doesn't seem to know it because you just want to curl up in a ball in the corner and cry it hurts so bad. Finally you get a chance to go to the restroom and you pee but it doesn't matter because in just a few minutes you are going to be throwing up so hard that you pee on yourself, you pull muscles in your back and chest, If you ate bread it gets stuck in a ball in your esophagus and that often chokes you. There are the heart palpitations and then something more terrifying than the choking and palpitations combined, you cannot stop the steady stream of throw up and you realize you are drowning in your own puke and just before you are about to pass out, you know you can't gasp for air because you will just aspirate the throw up and truly drown. So you find a way to cut off the flow, cough so nothing is left in your airway and finally gasp for air. then you can blow all of the puke out of your nose and start all over again. On the flip side, you go from severe constipation to impactions, which I hope no one reading this knows what that is or has to deal with that ever. Let's just say very painful. From that you go to severe diarrhea, acid burning hours long diarrhea. It is no wonder most gastroenterologist don't want to deal with this disease. After all that now you are wondering why I ever put any food in my mouth, and for a very long while I did not and was on complete IV nutrition. On IV nutrition I gained 50 pounds so I asked to be taken off of it about 6 months ago. The problem now is I have not lost a single ounce but my body has become progressively more malnourished. My body won't let go of any weight because it is in starvation mode and currently cannibalizing itself. My bones and teeth are getting soft, my muscles show weakness due to malnutrition and my bloodwork shows anemia and off the scales low on vitamin D.  As soon as I am able, I will go back to my doctor and return to full IV nutrition because I cannot live this way another second. It has made me mean and ugly even to my precious family who adores me and only wants the best for me. I wouldn't wish this disease on anyone, but the worst part about it for me is not the gastroparesis which is just a symptom of the genetic disorder I was born with. A genetic disorder that systematically shuts down your organs. First was my appendix at age 12 after a few years of similar symptoms I described here only with added fever and sleeping on the cold tile bathroom floor because it hurt to bad to move and I had a consistent flow from both ends. In 2008 it shut down my gallbladder, after having it removed there were no stones, just craters like you see in the moon, a tell tale sign that my disorder that caused my gastroparesis and now my small intestines to be paralyzed. I know what follows, the duodenum, the liver, and pancreas, organs you cannot live without so if we cannot find a way to stop my body from shutting down anymore the my final option is a multi-visceral transplant, something I really hope to avoid. Prolonged gastroparesis symptoms can lead to POTS Postural orthostatic tachycardia syndrome. I am already having symptoms of POTS and CIP Chronic Intestinal Pseudo obstruction but I have not been formally diagnosed with either. Anyway that is a very literal look on the inside of what I live daily. I know people have a hard time understanding and even explaining it to others, well now you have to look no farther because here it is in black and white.