I have had gastroparesis at least since 2003. My first two gastric emptying studies were on the "slow end of normal" and I was told I did not have gastroparesis even though I had all the classic symptoms. Finally, my CF doctor ordered a 3rd gastric emptying test which showed I had gastroparesis. I tried Reglan and experienced side effects. I was told gastroparesis was uncommon in CF and I was the only CF patient with gastroparesis. Now I have contact with nearly 1,000 CF patients or parents of a CF child(ren) and I have found there is a large number of us who suffering with gastroparesis. I take Motilium (Domperidone) by Janssen-Cilag (name brand) alternated with Ganaton (Itopride Hydrochloride) and have done so since 2006; however, gastroparesis can be progressive and in my case it has progressed to where medications are not as effective as they once were.
I now experience severe reflux at night shortly after I eat. I cough for hours. I can feel the undigested food coming back up into my throat. Yet the GI doctor at UNC tells me I don't have reflux just because a pH-impedence study did not show significant reflux, but showed some regurgitation. However, I KNOW what is causing me to cough at night because once my food finally empties from my stomach the reflux stops and I stop coughing.
Anyone else noticed worsening lung infections shortly after experiencing symptoms of gastroparesis? Gastroparesis leads to more reflux which increases chances of aspiration. I have had a significant increase in pulmonary exacerbations since my gastroparesis worsened. I also had massive hemoptysis (life-threatening) in February 2011 and vomited up undigested food while in ICU over 12 hours later which makes me believe I aspirated the Miralax I drank on top of the undigested food I had for lunch that day.
For several years I have been advocating the coexistance of gastroparesis in patients with CF. Our pulmonologists only focus on the lungs, but fail to realize gastroparesis does worsen pulmonary disease. And gastroparesis is present in nearly half of patients living with CF per a research article I recently read by Bob De Lisle. I have met numerous CF patients who have gastroparesis and it has made life very challenging. Currently, I am learning more about feeding tubes because I may have to get one placed (a J-tube) due to gastroparesis and not keeping my weight up. I'm always exhausted--likely from not being able to keep up my calories or vitamin levels. It's beyond frustrating and a challenge with CF, especially since our lungs need additional calories and gastroparesis makes meeting a caloric goal nearly impossible.
