The Nightmare ..

I was finally diagnosed with Gastroparesis in 2004 after tow years of being told I had acid reflux disease. When they finally diagnosed me they started me on alternating does of Reglan and Domeperidone.I do not have diabetes so that was never a factor.  The medicines stopped working six month later and I lost 45 pounds in one month. They said treatment options were very limited. Even though they tell you that it is a chronic illness with chronic gastritis to go along with it, it's the tings they don't tell you that get you later. Like the excrutiating stomach pain. The never ending ball of nausea. The vitamin deficiencies. The diarrhea..The constipation. The nights you lay awake crying with so much pain it's as if your stomach is tearing in two...The violent vomiting that leads to the inevitable wave of muscle spasms and charlie horses marching through your gut. The dehydration..The loss of calcium that causes your teeth to break at the roots ....and they have the nerve to say.."oh ..were so sorry,,but there is nothing we can do." For those who suffer with this..You have my heartfelt sympathy. They told me my last option is a feeding tube... Oh JOY!

cursedmom cursedmom
36-40, F
2 Responses Feb 16, 2010

I completely agree. And if they could remember what the nutritional problems can do, they might remember to tell us how to try to avoid them, except that it took me 18 months to get diagnosed so by the time I knew how nutritionally depleted I was, a lot of the damage was already done. I asked the GI doc a few weeks ago to recommend an easy-on-the-stomach, gluten-free (I'm a celiac, too), liquid vitamin for adults. Instead of saying the truth, "I really haven't kept up with the products available," he started telling me that all adults get plenty of B vitamins. I interrupted him, saying vehemently, "All adults who ARE EATING get plenty of B vitamins." This was one of the good docs. He looked sheepish and agreed with me. The bad docs would bluster and get upset because I interrupted.<br />
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Until they suffer these symptoms for a few weeks, they can't possibly understand.<br />
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LiveNew

I feel your frustration; I went to my gastro doc to talk about a trip to the emergency room and he acted like it was par for the course and that I would end up there often. He said all we can do is "manage the symptoms and wait to see if it gets better". Yeah.