GERD

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Jane

Digital opinion leader
Our doctors are now talking to us about the boys having reflux problems. They are scheduled to do a 24 hour impedance monitor (probe study?) on monday.

I've read a little about GERD, I'm assuming this is what they're looking for, and I'm curious if any of you have this, what your symptoms were, how it was diagnosed and what you do to treat it. I know its been included in some threads, but a search didn't show a post on it specifically.

Thanks everyone.

Jane
 
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Scarlett81

New member
I have it. In 1995 there was this new doctor at my CF center who had a theory about reflux being related to CF. He wanted to do a test on all the kids to see if they had it as a sort of experiment. My mom didn't want me to, and complained about it, but as it was not invasive and for cf research, she said ok. Turns out I had it.

Now it's much worse, and if I dont' take my meds the pain keeps me up at night. I started with Zantac in the 90s and now I'm on Protonix. I love the Protonix. Keep in mind, though-while you need to take the meds, over time some of them can actually errode the lining of your stomach and cause more problems. For this reason, I've always taken acidophilus in the form of eating yogurt every day to help replenish good bacteria. Also, my current cf docotr says that you should be endoscoped every few years to make sure everything's ok down there. Most people don't do that, they're docs don't mention that and they have problems eventually.
 
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thelizardqueen

New member
My doc told me that the severe heartburn that I'm getting is GERD. I throw up from it, I get burning painful sensations in my chest so badly that I sometimes think I'll die. I lost my appetite from it, because the burning would be so bad. My doc originally put me on zantac for a month, but I got horrible diahhrea, cramps an bloating from it, so he's switched me to Pantoloc. I'm not sure if its working for me, as I only started it yesterday. I know that if I don't take the meds for it, I can't eat, and get horrible pains from the acid in my stomach and chest.
 
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JustDucky

New member
I have severe GERD, at one point before my lungs got really bad, the docs were considering a procedure called a Nissen fundoplication. They diagnosed the GERD with the barium swallow and tilting the table, alot of the the barium refluxed right back into my esophagus. I also underwent a procedure called an upper endoscopy which visualized my stomache, the sphincter (LES) as well as my esophagus to make sure that there wasn't any serious damage. Normally, the LES sphincter remains shut, but the docs found that mine never is closed, it is open all of the time...when the docs pointed the camera up within my stomache to see how far they could see up into my esophagus, they said that they could see half way up.
When I bend over, I can feel stuff go into my esophagus and reflux clear into my mouth...I know, gross but true. I take Nexium right now, it seems to hellp lthe acidity of my stomach.
Hugs to all, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
I had the upper GI test which they take xrays while you swallow barium. mmmm mmmm mmmm... chaulky.... Now I take prilosec.
 
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anonymous

New member
Rip had GERD. It's common with folks with Marfan.
It's often causitive with asthma and wheezing.
Having GERD can cause you to aspirate the contents of your tummy.
Here's an article about how fixing GERD in folks who have had lung transplants improves results <a target=_blank class=ftalternatingbarlinklarge href="http://www.dukenews.duke.edu/2002/05/refluxsurg0502.html">http://www.dukenews.duke.edu/2...05/refluxsurg0502.html</a> . There are lots of other articles about the relationship between lung function and GERD that you can find thru the web.
-LisaV
at work
 
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anonymous

New member
My son has reflux- has been on reglan as an infant and zantac. Now he is on Nexium and swears by it. I think I know more people with CF that have issues with reflux than I know that dont. Susan
 
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ej0820

New member
I have GERD too. I didn't really think anything of it for a while, I just thought I had bad heartburn, but it got so painful that I couldn't eat anything...tomatoes, chocolate, even water would give me heartburn. It was so bad everyday that my mouth would water and the pain would make me cough. I'm on prevacid now and love it...I can eat and do anything and there's no more pain at all!!!!



erin
20/f/cf
 
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Jane

Digital opinion leader
Thanks for your input everyone. Neither of my kids have ever had reflux symptoms of any kind. Both are already on prevacid because the docs thought it might help with enzyme absorption. I think the docs are just trying do rule out anything they can that might explain why Josh is having such a hard time right now. Today makes two weeks for him. No word about him going home. <img src="i/expressions/face-icon-small-sad.gif" border="0">Jesse will be able to go home after the probe study on Tuesday.
 
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LisaV

New member
Thanks for the update, Jane.
Good to hear that Jesse will be home soon.
Tough news about Josh. Hope they zero in on something effective soon.
I'll be keeping him extra close in my heart...
 
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Allie

New member
Jane, I'll be keeping you both in my heart <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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