Gastroparesis....gastronomicus According to Friends
I was diagnosed with idiopathic gastroparesis in late February of this year. It was originally treated as peptic ulcers because I felt like I was on fire within seconds of eating anything and was rapidly losing weight. I'm an athletic trainer at a high school right now, and could barely do my job during spring sports because I was so fatigued. I have progressed to the point of losing 20 lbs, and I have constant nausea that even zofran won't touch. I have managed to maintain my hydration a little better the past month, but my bloodwork shows my nutrition levels dropping so I may need a feeding tube soon. I can't keep solid foods down very well at all. I did my own gastric emptying exam and found salad 8....yes 8 hours later.
All medications have failed (reglan which is death in a pill, erythro, and domperidone). The pyloric sphyncter injection of botox was denied by my insurance. I am waiting on a doc appt with the only guy in the northwest that can prescribe something called propulsid which was taken off the market in 2000. Does anyone know much about this medication and its use for gastroparesis as well as its efficacy? The GES was also denied by my insurance so we must appeal for that as well. I'm nauseated 24/7 whether I eat or not. I get the shakes and can't move my body if I don't eat, but if I eat solids I throw them up from severe nausea. It's a really crappy cycle that I can't break.
I'm here because I just need to know how others deal with this. I'm 22 years old and got sick right after accepting a graduate assistant athletic training position at a division I university. I'm a tough cookie and although I throw up solid foods, eat a lot of baby food, and am depressed, I only missed a couple days of work because my doctor made me. They've ran every test in the book and can't find a single reason behind the cause of this. Super. At 22 it takes all my energy to go out and see friends but I'm upset. I see others my age having fun and living their lives, and although I am thankful I'm alive and this isn't more serious, it's hard to deal with something that shuts down your life and ruins your dreams. Its summer time and I can't work collegiate sport camps because I'm constantly drained, fatigued, and by the time I have the energy to go do something fun just the thought of it has exhausted me. People at work call me skeletor because I've lost so much weight. Thank god they helped me get through my spring sports, I have such great athletes and coaches I wouldn't have made it without them, but it's still a struggle. If I go do something fun it lands me on the couch or in bed for days after. My sleep isn't restorative, I don't know....is this a similar story to other people??? If anyone has advice I would really love it. Thanks all, and good luck to everyone else as well.