Living with Gastroparesis

I was diagnosed with gastroparesis in late 2008 (?), after suffering from symptoms since July 2007. It all started out with me waking up nauseated one morning, and later that morning vomiting. From then on I had a lot of nausea. Then came the early fullness. And after I ate solid foods, I’d get horrible stomach pains, a burning sensation and cramps, along with terrible acid reflux and the occasional vomiting. These pains would go on for hours, and yes, I was always told “you know they’ll go away,” but that’s the last thing on my mind at that moment. The one thing on my mind is “why is this happening to me??”

After a few ER visits due to dehydration, and a 21 lb. weight loss (105 to 84), I finally got referred to a GI specialist, Dr. Kang at MUSC. He was the one to diagnose me with idiopathic gastroparesis. There are two kinds of gastroparesis: diabetic GP, and idiopathic, which means there is no known cause.

Gastroparesis means paralyzed stomach. Meaning the stomach and/or intestines have lost some or even all of it’s motility, making it nearly impossible for food to move through the gut/intestine. Also, there is no cure for gastroparesis.

During January 2009, i was hospitalized for what was supposed to be a 2 day hospital stay, to get a j-tube for feedings because I was having trouble keeping my weight up and was super malnurished. While the surgeons were trying to place the tube, they ran into a problem… the tube wouldn’t go where it was supposed to (They had to get it to go past my stomach, and into my small intestines since my stomach isn’t working properly). They looked at the x- rays and noticed a small kink in my intestines, so they had planned to take me into surgery to do a LADD’s procedure. Once they got started they realized the kink wasn’t as bad as they thought it was, and just did a malrotation surgery instead. They said that it was probably due to me being premature. So my 2 days hospital stay turned into a little over 2 weeks. And instead of getting a nj- tube, I got a picc line and was put on TPN for around 2 months until I gained all of my weight back.

After trying the little amount of meds used to help with gastroparesis symptoms, Dr. Kang didn’t know what else to do, so he got me an appointment in North Carolina with Dr. Koch, who i wasn’t impressed with at all. I left his office crying, needless to say… that appointment was a waste of gas. He told to think about the starving kids in Africa, that I didn’t have it that bad. I then got an appointment at Nationwide’s Children’s Hospital in Ohio. He ran some sort of test and just told me that my gastroparesis shouldn’t be causing me as much pain as it does, that my stomach was just hypersensative, which is hyperalgesia. I’m also pretty sure he said I had SMA syndome, but that was false. Since Nationwide didn’t do much for me, I then paid a visit to the Mayo Clinic in Rochester, MN in the summer of 2009 where they did a few tests. They redid my gastric emptying test, which indeed reconfirmed that I have gastroparesis. It said that it took my stomach 8 hours to empty. He also did some sort of balloon test, where he stuck a water balloon type thing up my rectum to see if i could push it out. I assume that was making sure my intestines were working? Once all the tests were done, we met back with the Dr. He gave me a prescription for iberogast, which is an herbal medicine (since we had tried all the other gp medicines out there.) I have yet to notice any improvement with it. That’s my journey so far.

A few months ago, I got a new GI doc. I’m not at all impressed with him, every visit the only thing I get out of him is “you need to gain weight.” Yes, I’m aware of that! Help me? Yeah, that’d be nice.

I’m trying to get a referral back to MUSC since the GI here isn’t doing much, but they’re being a tad bit difficult.

Medications I’ve tried: Reglan, erythromyacin, bentyl, domparidone, periactin. As you can see, the drugs to help with GP are very limited.

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