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Thursday, June 7, 2012

From March until Today

I was diagnosed with gastroparesis at the end of March. I hope this blog will help me keep track of everything and help me to feel better. Now, for some background.

I was hospitalized from March 28, 2012 until April 5, 2012. The doctors preformed a gastric emptying test, after preforming several blood tests, a cat scan (with dye and a barium swallow), and an MRI. All of the other tests came back normal except for elevated lipase levels and an ovarian cyst. The doctors determined that I had liver stones, which would explain the lipase levels.

My symptoms came out of nowhere. I couldn't keep food down, not even water. I was so sick and dehydrated that they admitted me to the hospital right away. I had a pretty good hospital experience until the night before I was released. I should explain.

I am a very hard stick and I have no veins left. I am usually a pretty good sport as I'm not scared of needles in any way but keep in mind that I've had a right elbow surgery, a left and right knee surgery, my appendix out, and my gallbladder out. I've also had several nerve blocks for my knee. So, with all of these surgeries comes lots of scar tissue. I don't have a lot in the way of veins anymore. When the nurse came in to change my infiltrated IV, she had to use a sonogram machine to find another vein. Then, she hit a nerve while trying to find a vein for my IV. I screamed. I've never screamed so loudly. I sobbed for hours. That had to be the worst shooting pain I've ever experienced. Remember that I had been in the hospital for a week before this, so I was bruised and sore everywhere. This event just exacerbated that. As it turns out, I found out later, I didn't even need the IV anymore. She was poking me based on the charge nurse's instructions. The charge nurse was later reprimanded by my very angry doctor. My blood pressure went down from 154/112 to 120/82 with fluids and medication. I always have high blood pressure when I'm in a lot of pain.

I was hospitalized again, overnight, on May 25th to May 26th. I received more fluids, pain and anti nausea medicine. My blood pressure was 150/111, and was still high when I left.

Well, yesterday I had my first colonoscopy. The doctor wanted to make sure that everything was normal and that I didn't have any other issues hiding like Crohn's Disease. Everything turned out to be normal. However, the anesthesia caused me to sleep all day. My blood pressure was high again but back down to 120/80 after I received fluids and medication.

One of my biggest problems is not being able to keep anything down, not even water. I can't keep my medicine down or food. I feel like I'm being conditioned not to eat because every time I do, it burns in my stomach horribly and then it feels like I've been sucker punched in the stomach. The pain is so intense and then I start throwing up. I HATE throwing up. I try not to, but this is persistent. Also, it's usually stomach acid, which irritates and burns my throat. Even the smell of food triggers it. I'm not sure what to do about it. I've been on a gluten free diet for a few months and that does help, but not enough. I eat bland, easy to digest foods. Lately, I've been on a liquids only diet because it's the only thing I can stomach. When I do manage to digest and keep down food, it stays in my stomach up to five days.

The doctor I'm seeing now is making me see a motility specialist. I'm scared that I may need a severe treatment like the pacemaker or a gastric bypass and worst case - a feeding tube. None of the "solutions" to this problem are really solutions. They are so life changing that I want to make sure before I attempt any of them. However, I am getting quite desperate. I miss food. I love cooking, it relaxes me and I can't even do that anymore. I can't play my favorite zombie games either, because I'll get motion sick. I haven't been able to leave my house (bathroom) to even go on a short car ride to the pharmacy. I feel like I'm on house arrest, almost. The antinausea meds, I'm taking phenergan AND zofran, aren't really helping. I'm on Levsin now, too. The doctor didn't want me to take Reglan because of all of the side effects.

I'm mainly just stressed out because I don't know what the future will hold for me. I feel like I've had so many tests and they always come out normal even though I know what's going on with me is far from normal. I have lost about 15 pounds and counting. My stomach is swollen and I'm consistently and constantly in pain. The pain gets overlooked by my doctors because the pain medicine they could give me would slow down digestion more and the nausea is a problem that needs to be controlled first. I hope this medicine helps.
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