CF and GERD

[Deb]

Wondering if anyone else has severe GERD in addition to CF? I take Nexium and sleep with my bed at a 30 degree incline but I have still had two episodes of aspiration into my lung. They tell me that I am not a candidate for esophageal surgery due to other issues. I must now rely on life style and diet changes to prevent further episodes.
My last episode resulted in a severe pneumonia. Since I only have one lung I cannot let this happen again.
My doctor says no more caffeine, chocolate, alcohol, or any type of carbonated beverages. Wow...that is going to be a big adjustment. Also can't eat anything after 6:30 pm.
Any one have suggestions for things that have really helped?

 

[Deb]

Wondering if anyone else has severe GERD in addition to CF? I take Nexium and sleep with my bed at a 30 degree incline but I have still had two episodes of aspiration into my lung. They tell me that I am not a candidate for esophageal surgery due to other issues. I must now rely on life style and diet changes to prevent further episodes.
My last episode resulted in a severe pneumonia. Since I only have one lung I cannot let this happen again.
My doctor says no more caffeine, chocolate, alcohol, or any type of carbonated beverages. Wow...that is going to be a big adjustment. Also can't eat anything after 6:30 pm.
Any one have suggestions for things that have really helped?

 

[Deb]

Wondering if anyone else has severe GERD in addition to CF? I take Nexium and sleep with my bed at a 30 degree incline but I have still had two episodes of aspiration into my lung. They tell me that I am not a candidate for esophageal surgery due to other issues. I must now rely on life style and diet changes to prevent further episodes.
<br />My last episode resulted in a severe pneumonia. Since I only have one lung I cannot let this happen again.
<br />My doctor says no more caffeine, chocolate, alcohol, or any type of carbonated beverages. Wow...that is going to be a big adjustment. Also can't eat anything after 6:30 pm.
<br />Any one have suggestions for things that have really helped?

 

[kirstynkoffs]

Hello I am sorry you are sruggling with this. GERD is relatively common in CF, infact I recall there was a presentation at the international CF conference a few years back about how common it actually is but many people are undiagnosed which is very detrimental to lung health.

I am in a similar situation to yours, I suffer from bad reflux but due to poor lung function am not a
candidate for surgery. For what it is worth my dr isn't a advocate for the surgery in any of her patients due to it being unsuccessful in a large number (30% comes to mind but don't quote me there.) of patients. Recently I have been having recurrent infections which my dr thought maybe caused by reflux. I have started a drug that speeds up gastric emptying in addition to nexium. This seems to
be working wonders and I strongly suggest asking your doc about it. Hope you can find a solution.

 

[kirstynkoffs]

Hello I am sorry you are sruggling with this. GERD is relatively common in CF, infact I recall there was a presentation at the international CF conference a few years back about how common it actually is but many people are undiagnosed which is very detrimental to lung health.

I am in a similar situation to yours, I suffer from bad reflux but due to poor lung function am not a
candidate for surgery. For what it is worth my dr isn't a advocate for the surgery in any of her patients due to it being unsuccessful in a large number (30% comes to mind but don't quote me there.) of patients. Recently I have been having recurrent infections which my dr thought maybe caused by reflux. I have started a drug that speeds up gastric emptying in addition to nexium. This seems to
be working wonders and I strongly suggest asking your doc about it. Hope you can find a solution.

 

[kirstynkoffs]

Hello I am sorry you are sruggling with this. GERD is relatively common in CF, infact I recall there was a presentation at the international CF conference a few years back about how common it actually is but many people are undiagnosed which is very detrimental to lung health.
<br />
<br />I am in a similar situation to yours, I suffer from bad reflux but due to poor lung function am not a
<br />candidate for surgery. For what it is worth my dr isn't a advocate for the surgery in any of her patients due to it being unsuccessful in a large number (30% comes to mind but don't quote me there.) of patients. Recently I have been having recurrent infections which my dr thought maybe caused by reflux. I have started a drug that speeds up gastric emptying in addition to nexium. This seems to
<br />be working wonders and I strongly suggest asking your doc about it. Hope you can find a solution.

 

[Mommafirst]

Hi Deb -- I don't have CF, but I do suffer from horrible GERD. I have a hiatal hernia that is keeping my stomach open and allowing the acid to come up. I have completely gotten rid of caffeine, chocolate, mint, alcohol, carbonation, tomato products and acidic juices. Its only helped a very small amount. I did switch meds and that helped a bit. I now take dexilant and zantac. The dexilant is an excellent drug (I tried prilosec, nexium, prevacid and aciphex before settling on the dexilant). You may want to ask your doctor about that.

I feel for you. I don't have lung issues and the GERD makes me wheeze and causes lots of breathing problems, so I can only imagine how much this escalates your CF stuff.

I hope you can find a way to get it under control.

 

[Mommafirst]

Hi Deb -- I don't have CF, but I do suffer from horrible GERD. I have a hiatal hernia that is keeping my stomach open and allowing the acid to come up. I have completely gotten rid of caffeine, chocolate, mint, alcohol, carbonation, tomato products and acidic juices. Its only helped a very small amount. I did switch meds and that helped a bit. I now take dexilant and zantac. The dexilant is an excellent drug (I tried prilosec, nexium, prevacid and aciphex before settling on the dexilant). You may want to ask your doctor about that.

I feel for you. I don't have lung issues and the GERD makes me wheeze and causes lots of breathing problems, so I can only imagine how much this escalates your CF stuff.

I hope you can find a way to get it under control.

 

[Mommafirst]

Hi Deb -- I don't have CF, but I do suffer from horrible GERD. I have a hiatal hernia that is keeping my stomach open and allowing the acid to come up. I have completely gotten rid of caffeine, chocolate, mint, alcohol, carbonation, tomato products and acidic juices. Its only helped a very small amount. I did switch meds and that helped a bit. I now take dexilant and zantac. The dexilant is an excellent drug (I tried prilosec, nexium, prevacid and aciphex before settling on the dexilant). You may want to ask your doctor about that.
<br />
<br />I feel for you. I don't have lung issues and the GERD makes me wheeze and causes lots of breathing problems, so I can only imagine how much this escalates your CF stuff.
<br />
<br />I hope you can find a way to get it under control.