I have CF, CFRD, Gastroparesis, and for the last year severe reflux. I had a pH-impedence test which came back normal, other than regurgitation being associated with cough. My gastroparesis is severe and I take two medications to treat delayed gastric emptying: Motilium alternated every other week with Ganaton. I am considering having a nissen fundoplication to prevent reflux. My GI doctor, whom I respect, does not recommend a nissen fundoplication. He said that my pH-impedence test was normal and does not indicate a need for fundoplication (stomach wrap). However, I do have symptoms of reflux:1. Waking up coughing from reflux of undigested food2. I have not been able to lay flat for two years due to severe reflux3. I have not slept in a bed in two years due to being unable to lay flat; I sleep on a sofa propped up on 6 pillows or in a recliner. 4. I only eat a solid meal for lunch and liquids for dinner to reduce symptoms of reflux; this still does not prevent me from experiencing #15. I am maxed out on my PPI and motility agents, yet continue to experience reflux. My GI Medicine doctor told me not to have fundoplication. He does not believe it will help me and that it will likely cause me more problems. He said this opinion is based solely upon my pH-impedence test results. My GI Medicine doctor also said he does not believe my reflux is bad enough to affect my lungs. I sought out a second opinion at Duke with a thoracic surgeon, who based solely upon my symptoms, said that I am a candidate for nissen fundoplication. He said that he does not know if it will or will not help my lungs. I was told that Duke is doing extensive research in aspiration post-transplant and that it can cause BOS in transplant patients and thus could potentially cause lung issues in those with CF before transplant. I have NOT had a transplant. I have two very different opinons from two different doctors. My test results are normal, yet I have classic symptoms of reflux. I am nervous. I am scared. My proposed surgery date at Duke is March 28th. I do not have any spare weight to lose as I am already underweight. I do not know what to do. On one hand I want to have fundoplication so that I no longer experience reflux, which my GI medicine doctor said is not significant. On the other hand I do not want to alter my anatomy and have major surgery that could end up with serious complications. I want to hear from those of you who have had fundoplication. How was the surgery recovery?
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Fundoplication, Reflux, and CF Lungs
- Thread starter UNCLoveCF
- Start date
Hey Meranda~
I'm sorry you are going through this...
I see that you are doing liquids at night to try and help with reflux.
While mine was no where near this severe, I did have reflux and it completely went away when I gave up sugar, wheat, dairy, coffee...
Would you be willing to try that for a week? I can help you figure out a diet. You will notice a difference immediately if it is from inflammatory response to what you are eating... I think diet sounds pretty interesting based on the results from your tests.
An anti-inflammatory diet changed my life and I'm just thinking before under-going such a drastic surgery, this might be a less invasive way to help?
Allergy to food can present in a way that mimics MANY other illnesses...
I'm sorry you are going through this...
I see that you are doing liquids at night to try and help with reflux.
While mine was no where near this severe, I did have reflux and it completely went away when I gave up sugar, wheat, dairy, coffee...
Would you be willing to try that for a week? I can help you figure out a diet. You will notice a difference immediately if it is from inflammatory response to what you are eating... I think diet sounds pretty interesting based on the results from your tests.
An anti-inflammatory diet changed my life and I'm just thinking before under-going such a drastic surgery, this might be a less invasive way to help?
Allergy to food can present in a way that mimics MANY other illnesses...
Hey Meranda~
I'm sorry you are going through this...
I see that you are doing liquids at night to try and help with reflux.
While mine was no where near this severe, I did have reflux and it completely went away when I gave up sugar, wheat, dairy, coffee...
Would you be willing to try that for a week? I can help you figure out a diet. You will notice a difference immediately if it is from inflammatory response to what you are eating... I think diet sounds pretty interesting based on the results from your tests.
An anti-inflammatory diet changed my life and I'm just thinking before under-going such a drastic surgery, this might be a less invasive way to help?
Allergy to food can present in a way that mimics MANY other illnesses...
I'm sorry you are going through this...
I see that you are doing liquids at night to try and help with reflux.
While mine was no where near this severe, I did have reflux and it completely went away when I gave up sugar, wheat, dairy, coffee...
Would you be willing to try that for a week? I can help you figure out a diet. You will notice a difference immediately if it is from inflammatory response to what you are eating... I think diet sounds pretty interesting based on the results from your tests.
An anti-inflammatory diet changed my life and I'm just thinking before under-going such a drastic surgery, this might be a less invasive way to help?
Allergy to food can present in a way that mimics MANY other illnesses...
JennifersHope
New member
It has been recommended to me on more then one occasion that I should get the wrap done as well. I am maxed out on PPI and H2 blockers and I feel like it is doing okay. My PH test was totally abnormal and I have a family history of espohageal cancer..... I also culture in my lungs bacteria found in my stomach. I STILL DO NOT want to have the surgery....
They would pretty much have to tell me there is no other option to stop the infections or that I was getting cancer in order for me to get it....
I just can't bare the thought of such an extensive surgery.....My body has been through so much already and I just can't.. I am going to NJ soon and I will see what they say.
If your PH study is normal I don't understand how you are refluxing? Were you taking your medications when you had your test because that will throw the whole test off?
I reflux all day and all night, if I bend over it comes out my nose now. It is gross.... Sorry you are torn as to what to do.
They would pretty much have to tell me there is no other option to stop the infections or that I was getting cancer in order for me to get it....
I just can't bare the thought of such an extensive surgery.....My body has been through so much already and I just can't.. I am going to NJ soon and I will see what they say.
If your PH study is normal I don't understand how you are refluxing? Were you taking your medications when you had your test because that will throw the whole test off?
I reflux all day and all night, if I bend over it comes out my nose now. It is gross.... Sorry you are torn as to what to do.
JennifersHope
New member
It has been recommended to me on more then one occasion that I should get the wrap done as well. I am maxed out on PPI and H2 blockers and I feel like it is doing okay. My PH test was totally abnormal and I have a family history of espohageal cancer..... I also culture in my lungs bacteria found in my stomach. I STILL DO NOT want to have the surgery....
They would pretty much have to tell me there is no other option to stop the infections or that I was getting cancer in order for me to get it....
I just can't bare the thought of such an extensive surgery.....My body has been through so much already and I just can't.. I am going to NJ soon and I will see what they say.
If your PH study is normal I don't understand how you are refluxing? Were you taking your medications when you had your test because that will throw the whole test off?
I reflux all day and all night, if I bend over it comes out my nose now. It is gross.... Sorry you are torn as to what to do.
They would pretty much have to tell me there is no other option to stop the infections or that I was getting cancer in order for me to get it....
I just can't bare the thought of such an extensive surgery.....My body has been through so much already and I just can't.. I am going to NJ soon and I will see what they say.
If your PH study is normal I don't understand how you are refluxing? Were you taking your medications when you had your test because that will throw the whole test off?
I reflux all day and all night, if I bend over it comes out my nose now. It is gross.... Sorry you are torn as to what to do.
JennifersHope,Have your lungs not been affected by your reflux? The only reason I am considering nissen fundoplication is because I am concerned I am aspirating. I culture: Pseudomonas, Ralstonia, and Aspergillus. In January 2011 I began coughing up blood and have since had numerous episodes of hemoptysis, including massive hemoptysis requiring embolization. I am admitted to the hospital just as much as I am home. What does not make sense is that my FEV1 is in the 90's and yet I am always sick with lung infection, fevers, and hemoptysis. I have gone to CF clinic and blown 102% FEV1 only to go home and cough up blood a few days later. My doctors do not believe I am aspirating and especially do not believe reflux is causing my lungs any issues. Perhaps they are right. I am perplexed to say the least. My last CF doctor, whom I respect, believed that Aspergillus was causing me lung problems as well as hemoptysis. Unfortunately I failed antifungal therapy due to intolerable adverse side effects. The only option would be to get a feeding tube to continue getting nutrition since -Azole antifungals cause me nausea and vomiting. If your lungs are not being affected by reflux then I certainly do not recommend fundoplication. But the fact that you are culturing stomach bugs in your lungs is an alarm. What exactly is the name of the "stomach bug" you are culturing? I grow Oropharyngeal Flora, which I am told is nothing to be concerned about. Can you be more specific as to what the "stomach bug" is called that you culture?
JennifersHope,Have your lungs not been affected by your reflux? The only reason I am considering nissen fundoplication is because I am concerned I am aspirating. I culture: Pseudomonas, Ralstonia, and Aspergillus. In January 2011 I began coughing up blood and have since had numerous episodes of hemoptysis, including massive hemoptysis requiring embolization. I am admitted to the hospital just as much as I am home. What does not make sense is that my FEV1 is in the 90's and yet I am always sick with lung infection, fevers, and hemoptysis. I have gone to CF clinic and blown 102% FEV1 only to go home and cough up blood a few days later. My doctors do not believe I am aspirating and especially do not believe reflux is causing my lungs any issues. Perhaps they are right. I am perplexed to say the least. My last CF doctor, whom I respect, believed that Aspergillus was causing me lung problems as well as hemoptysis. Unfortunately I failed antifungal therapy due to intolerable adverse side effects. The only option would be to get a feeding tube to continue getting nutrition since -Azole antifungals cause me nausea and vomiting. If your lungs are not being affected by reflux then I certainly do not recommend fundoplication. But the fact that you are culturing stomach bugs in your lungs is an alarm. What exactly is the name of the "stomach bug" you are culturing? I grow Oropharyngeal Flora, which I am told is nothing to be concerned about. Can you be more specific as to what the "stomach bug" is called that you culture?
S
sdelorenzo
Guest
My daughter had a Nissan fundoplication done when she had her feeding tube
places five years ago. It was done laparoscopically. It has helped her tremendously. Her
Lung function shot up from 65% to 110%. SHe stopped waking up in the middle of the night
coughing. She has never had one problem from the procedure. She was five when she had it done,
but she was back to 100% normal and no pain two days later eating regular foods. But I hear
that isn't always the case.
Sharon, mon of Sophia, 10 and Jack, 8 Both with CF and Grant, 3 and Paige, 1 both without CF
places five years ago. It was done laparoscopically. It has helped her tremendously. Her
Lung function shot up from 65% to 110%. SHe stopped waking up in the middle of the night
coughing. She has never had one problem from the procedure. She was five when she had it done,
but she was back to 100% normal and no pain two days later eating regular foods. But I hear
that isn't always the case.
Sharon, mon of Sophia, 10 and Jack, 8 Both with CF and Grant, 3 and Paige, 1 both without CF
S
sdelorenzo
Guest
My daughter had a Nissan fundoplication done when she had her feeding tube
places five years ago. It was done laparoscopically. It has helped her tremendously. Her
Lung function shot up from 65% to 110%. SHe stopped waking up in the middle of the night
coughing. She has never had one problem from the procedure. She was five when she had it done,
but she was back to 100% normal and no pain two days later eating regular foods. But I hear
that isn't always the case.
Sharon, mon of Sophia, 10 and Jack, 8 Both with CF and Grant, 3 and Paige, 1 both without CF
places five years ago. It was done laparoscopically. It has helped her tremendously. Her
Lung function shot up from 65% to 110%. SHe stopped waking up in the middle of the night
coughing. She has never had one problem from the procedure. She was five when she had it done,
but she was back to 100% normal and no pain two days later eating regular foods. But I hear
that isn't always the case.
Sharon, mon of Sophia, 10 and Jack, 8 Both with CF and Grant, 3 and Paige, 1 both without CF
D
Deb
Guest
I also have several reflux and purchased an adjustable bed so that I can sleep at a 30 degree angle. This helps a lot.
A year ago I ate late at night and slept flat (I was in a hotel) and I aspirated into my lung. I became very sick from this and it took 6 months of IV to get all the infections under control. Now I NEVER sleep flat.
The thing that has helped me the most I discovered by accident. I joined a gym and started working out (Crossfit) At the gym they promote a PALEO diet (no grains, no dairy, no sugar, no legumes) While I don't always follow the diet strictly I discovered that eliminating the grains and the dairy made a HUGE difference in my reflux. I used to drink a lot of milk and I now wonder if I am lactose intolerant and never knew it. I feel so much better now that I don't drink milk. You might try some diet changes.
A year ago I ate late at night and slept flat (I was in a hotel) and I aspirated into my lung. I became very sick from this and it took 6 months of IV to get all the infections under control. Now I NEVER sleep flat.
The thing that has helped me the most I discovered by accident. I joined a gym and started working out (Crossfit) At the gym they promote a PALEO diet (no grains, no dairy, no sugar, no legumes) While I don't always follow the diet strictly I discovered that eliminating the grains and the dairy made a HUGE difference in my reflux. I used to drink a lot of milk and I now wonder if I am lactose intolerant and never knew it. I feel so much better now that I don't drink milk. You might try some diet changes.
D
Deb
Guest
I also have several reflux and purchased an adjustable bed so that I can sleep at a 30 degree angle. This helps a lot.
A year ago I ate late at night and slept flat (I was in a hotel) and I aspirated into my lung. I became very sick from this and it took 6 months of IV to get all the infections under control. Now I NEVER sleep flat.
The thing that has helped me the most I discovered by accident. I joined a gym and started working out (Crossfit) At the gym they promote a PALEO diet (no grains, no dairy, no sugar, no legumes) While I don't always follow the diet strictly I discovered that eliminating the grains and the dairy made a HUGE difference in my reflux. I used to drink a lot of milk and I now wonder if I am lactose intolerant and never knew it. I feel so much better now that I don't drink milk. You might try some diet changes.
A year ago I ate late at night and slept flat (I was in a hotel) and I aspirated into my lung. I became very sick from this and it took 6 months of IV to get all the infections under control. Now I NEVER sleep flat.
The thing that has helped me the most I discovered by accident. I joined a gym and started working out (Crossfit) At the gym they promote a PALEO diet (no grains, no dairy, no sugar, no legumes) While I don't always follow the diet strictly I discovered that eliminating the grains and the dairy made a HUGE difference in my reflux. I used to drink a lot of milk and I now wonder if I am lactose intolerant and never knew it. I feel so much better now that I don't drink milk. You might try some diet changes.
N
Nardia
Guest
Hi, I have also had a nissian fundoplacation, I actually had a half nissian as I was worried about the issues with eating afterward, weight loss etc. It was the best choice, I was having very similar problems to you, coughing for hours on end at night, waking up coughing etc I did have the stomach emptying test and ph impedance test which also came back neg. My specialist was not concern about the result as he was confident it was the reflux causing my coughing etc. As soon as I had recovered from the operation the coughing ceased. I started to sleep through the night and was getting lest infections.
I am sorry I have reply to you so late but I have only just join and read your message.
NardiaCF 43years, DF508, DIOS, FEV1 58%
I am sorry I have reply to you so late but I have only just join and read your message.
NardiaCF 43years, DF508, DIOS, FEV1 58%
N
Nardia
Guest
Hi, I have also had a nissian fundoplacation, I actually had a half nissian as I was worried about the issues with eating afterward, weight loss etc. It was the best choice, I was having very similar problems to you, coughing for hours on end at night, waking up coughing etc I did have the stomach emptying test and ph impedance test which also came back neg. My specialist was not concern about the result as he was confident it was the reflux causing my coughing etc. As soon as I had recovered from the operation the coughing ceased. I started to sleep through the night and was getting lest infections.
I am sorry I have reply to you so late but I have only just join and read your message.
NardiaCF 43years, DF508, DIOS, FEV1 58%
I am sorry I have reply to you so late but I have only just join and read your message.
NardiaCF 43years, DF508, DIOS, FEV1 58%
N
Nardia
Guest
Hi, I have also had a nissian fundoplacation, I actually had a half nissian as I was worried about the issues with eating afterward, weight loss etc. It was the best choice, I was having very similar problems to you, coughing for hours on end at night, waking up coughing etc I did have the stomach emptying test and ph impedance test which also came back neg. My specialist was not concern about the result as he was confident it was the reflux causing my coughing etc. As soon as I had recovered from the operation the coughing ceased. I started to sleep through the night and was getting lest infections.
I am sorry I have reply to you so late but I have only just join and read your message.
NardiaCF 43years, DF508, DIOS, FEV1 58%
I am sorry I have reply to you so late but I have only just join and read your message.
NardiaCF 43years, DF508, DIOS, FEV1 58%
N
Nardia
Guest
Hi, I have also had a nissian fundoplacation, I actually had a half nissian as I was worried about the issues with eating afterward, weight loss etc. It was the best choice, I was having very similar problems to you, coughing for hours on end at night, waking up coughing etc I did have the stomach emptying test and ph impedance test which also came back neg. My specialist was not concern about the result as he was confident it was the reflux causing my coughing etc. As soon as I had recovered from the operation the coughing ceased. I started to sleep through the night and was getting lest infections.
I am sorry I have reply to you so late but I have only just join and read your message.
NardiaCF 43years, DF508, DIOS, FEV1 58%
I am sorry I have reply to you so late but I have only just join and read your message.
NardiaCF 43years, DF508, DIOS, FEV1 58%
N
Nardia
Guest
Hi, I have also had a nissian fundoplacation, I actually had a half nissian as I was worried about the issues with eating afterward, weight loss etc. It was the best choice, I was having very similar problems to you, coughing for hours on end at night, waking up coughing etc I did have the stomach emptying test and ph impedance test which also came back neg. My specialist was not concern about the result as he was confident it was the reflux causing my coughing etc. As soon as I had recovered from the operation the coughing ceased. I started to sleep through the night and was getting lest infections.
I am sorry I have reply to you so late but I have only just join and read your message.
NardiaCF 43years, DF508, DIOS, FEV1 58%
I am sorry I have reply to you so late but I have only just join and read your message.
NardiaCF 43years, DF508, DIOS, FEV1 58%
N
Nardia
Guest
Hi, I have also had a nissian fundoplacation, I actually had a half nissian as I was worried about the issues with eating afterward, weight loss etc. It was the best choice, I was having very similar problems to you, coughing for hours on end at night, waking up coughing etc I did have the stomach emptying test and ph impedance test which also came back neg. My specialist was not concern about the result as he was confident it was the reflux causing my coughing etc. As soon as I had recovered from the operation the coughing ceased. I started to sleep through the night and was getting lest infections.
I am sorry I have reply to you so late but I have only just join and read your message.
NardiaCF 43years, DF508, DIOS, FEV1 58%
I am sorry I have reply to you so late but I have only just join and read your message.
NardiaCF 43years, DF508, DIOS, FEV1 58%
N
Nardia
Guest
Hi, I have also had a nissian fundoplacation, I actually had a half nissian as I was worried about the issues with eating afterward, weight loss etc. It was the best choice, I was having very similar problems to you, coughing for hours on end at night, waking up coughing etc I did have the stomach emptying test and ph impedance test which also came back neg. My specialist was not concern about the result as he was confident it was the reflux causing my coughing etc. As soon as I had recovered from the operation the coughing ceased. I started to sleep through the night and was getting lest infections.
I am sorry I have reply to you so late but I have only just join and read your message.
NardiaCF 43years, DF508, DIOS, FEV1 58%
I am sorry I have reply to you so late but I have only just join and read your message.
NardiaCF 43years, DF508, DIOS, FEV1 58%
N
Nardia
Guest
Hi, I have also had a nissian fundoplacation, I actually had a half nissian as I was worried about the issues with eating afterward, weight loss etc. It was the best choice, I was having very similar problems to you, coughing for hours on end at night, waking up coughing etc I did have the stomach emptying test and ph impedance test which also came back neg. My specialist was not concern about the result as he was confident it was the reflux causing my coughing etc. As soon as I had recovered from the operation the coughing ceased. I started to sleep through the night and was getting lest infections.
I am sorry I have reply to you so late but I have only just join and read your message.
NardiaCF 43years, DF508, DIOS, FEV1 58%
I am sorry I have reply to you so late but I have only just join and read your message.
NardiaCF 43years, DF508, DIOS, FEV1 58%