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Saturday, October 20, 2012

Updates on GP Management

I just downloaded a book that I hope will help that I found through the Gastroparesis community on Facebook. It's called, "Living Well with Gastroparesis" by Crystal Saltrelli. It has 75 recipes that should be easier for me to digest. I'm also going to try and keep a food journal to see what works and what doesn't.

What makes me happy about this book is that the author's story sounds strangely like mine. She went to the doctor and was diagnosed with Gastroparesis without hearing that word before, ever. Then, she went to the Motility Specialist who wrote her off because the Specialist felt that she wasn't a severe case, even though she was hospitalized over and over (much like me) for nausea, vomiting, and severe pain. It's just scary how similar my situation is to this woman.

The recommendation is to eat six small meals a day but that's challenging for me. I'm usually full after one small meal for several days, IF it stays down. I went to the doctor yesterday, dehydrated, and my blood pressure was back up to 140/110 because I was in pain and spent the last three days vomiting. I vomit, on average, about 6 to 8 times a day. Mostly, it's just green stomach acid because there's nothing left to come up at this point. Liquids won't even stay down.

I hope this book will help me learn to manage this condition. She says that the gastric pacemaker worked wonders for her and helped her to digest food easier. This was mentioned to me once by my GI doctor, but I haven't heard much else about it.

I can't live this way anymore. I can't leave my house without a bucket. I barely eat. I've lost 20 pounds. The doctors aren't sure what to do. The Motility Specialist doesn't want to see me until I need a feeding tube but I'd prefer not to have it come to that, you know?

I'm lethargic and tired. My friends don't want to hang around me, because let's face it, I can't go anywhere with my head shoved into a bucket. I just feel isolated and alone sometimes - and it hurts because no one understands this condition. My husband has been my rock and has been really supportive. But, I miss going out, even little things like to the movies or camping. The smell of food makes me really ill. I have to hide away from it when people are cooking downstairs.

I went to my regular doctor yesterday. He gave me Phenergan and Bentyl, which have helped in the past but it's hard for me to keep pills down. My stomach is bloated and swollen with severe pain. My skin is clammy because I have a fever. I managed to catch some kind of stomach virus ... and let me tell you, that plus gastroparesis makes me feel like I'm dying. The doctor wanted to put in an IV to hydrate me, but I was so dehydrated that he couldn't find a vein...not even in my FOOT! He said I should go to the emergency room but I just couldn't bring myself to go. I didn't want to wait 6 to 8 hours to be given pain and nausea medicine to be sent home just to have it all repeat over again. I want help managing the problem - not masking the symptoms.

Tuesday, I have a surgery scheduled for the Spinal Cord Electrical Stimulator (back surgery to control the nerve damage). This should help the nerves in my knee from misfiring me to tell me my knee is in severe pain. I'm hoping this will cut the vomiting in half as vomiting is also my pain response. That way, I can tell what is coming from my stomach and my stomach alone. Also, this will help me to walk again without making me feel like I've broken a bone in my knee. Walking is supposed to help digestion.

I will start the food journal tomorrow. I'm going to browse through these recipes to see if I can find anything worth making. I might have to make my husband do it because anything involving cooking or being near food makes me ill. I don't know if it's just in my head or what, but I can't deal with strong smells right now. I've been resting and trying not to push myself. I've been trying to drink gatorade, apple juice, and eat yogurt. Soft things that won't be too harsh on my stomach. I ate rice last night which was a bad mistake because now I have horrible gastric cramping. Before long, I just might have to buy some baby food and go from there.

What's even worse is that I've felt too sick to do anything. It's like everything I used to care about isn't even a priority at the moment because I am just so ill. I hate feeling that way. I miss my friends. I miss my family. It's even hard for me to play a video game because the games make me motion sick.

I just wish doctors wouldn't write me off because I'm not in need of a feeding tube yet. You think that they'd try to keep me from getting one, right? I'm just not sure what to do at this point. I don't want to be hospitalized for another 8 days but at the same time, I'm too weak to even take a shower to wash my hair.
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