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    • #25990
      David Swain
      Participant

      Acid Reflux operation  and IPF.

      I was diagnosed with IPF 3 years ago. For many years I have suffered an acid taste in my mouth, which is worst at night. This has now been finally diagnosed as acid reflux. I believe that this is the cause of my IPF,  due to the effect of the acid vapour on my lungs.

      I am considering having a surgical procedure called a fundoplication, which the consultant claims will cure the acid reflux.

      Please has anyone undergone this procedure? What was the recovery like and did it have any effect on the IPF?

      Thanks for your help.

      David Swain

    • #25991
      Susan Howitt
      Participant

      I just take omeprazole, works wonders, haven’t had a hint of reflux since I started on 10mg,  there are stronger doses.

    • #25992
      David Swain
      Participant

      Hi Susan. I’ve tried double doses of PPIs including Omeprazole; tried to find dietary triggers; tried not eating in the evening. Nothing seems to work. So that’s why I’m considering surgery.

    • #26003
      Malcolm Mann
      Participant

      I David I’ll put this in points as long winded response failed, again
      Coughing since before 2000
      PF diagnosed 2015
      Reflux suspected despite me being on anti reflux meds (ppi’s) since mid 90’s.
      Fundoplication in 2016, good recovery, back swimming inside a month post op.
      Fundo surgeon warned against heavy exercise & dont lift heavy weights etc, or it will fail.
      IPF confirmed 2018, I’m on Esbriet, which causes me reflux in me, so I’m still on ppi’s
      No noticeable change since fundo, still coughing, IPF still progressing at slow rate
      In my case the fundo did not result in any improvement in PF symptoms, who knows, my deterioration may have been greater without the fundo.
      PM me if you would like to ask anything
      Cheers
      Mal

    • #26004
      Anne Philiben
      Participant

      I’ve had two fundoplications and still have reflux.  I take long acting omeprazole at 11PM and that seems to work well. My fibrosis slowed after the first fundoplication.

    • #26013
      David Swain
      Participant

      Thanks for your replies Malcolm and Anne.
      I’m sorry to hear your fundoplications did not result in any significant improvement. I had a discussion with the anaesthetist today who told me off the higher than normal risks, due to my PF. I will now have to consider whether to continue. As a matter of interests, do you think having the fundos gave any benefit at all. Thanks. Keep well.

       

    • #26018
      Malcolm Mann
      Participant

      Hi David

      Like I said we don’t know, without the fundo I may have been much worse position. I glad I had it if only to avoid another potential cause. I read somewhere that while reflux is not a direct cause of IPF (ie there are plenty of burpers without IPF), it is present in many IPF sufferers. Before my fundo I was on a cheerful fundo forum, there were many very negative reports, but my operation and recovery were flawless.

      I’ve had two anesthetics since diagnosis with IPF, the anesthetists were not overly concerned.

      An immediate advantage of the procedure is weight loss, I lost 6kg (13lb) and a drop in jean size. Since being on anti-fibrotic drugs I have lost a bit more, I’m down to my 20s weight.

      cheers

      Mal

       

    • #26020
      Rene Hakkenberg
      Participant

      Hi Davis, this must be becoming very difficult for you with so many opinions. I have IPF, diagnosed in 2017 but was probably there already in 2014. Now on Ofev 200 mg daily.

      My experience: Weill Cornell  hospital in NY December 2017  diagnosed reflux and was a potential cause of my IPF. Had Nissen fundoplication and lung biopsy in one operation. Lung biopsy showed IPF. After er a year I had reflux checked again and it was still there, so useless operation except that for 2 years I suffered the effects of the fundoplication: on the average once a week, mostly at night, feeling nauseous, vomiting  and a sharp pain in hr Sphincter area, which is where they do the fundoplication. I lost 10 kg which makes me much below a healthy weight, but this may have been caused by there IPF and Ofev. So, not only was the operation not successful, it made things much worse, even though the surgeon was supposed te be one of the best.

      I would love to hear if anyone has found a way to gain weight (outside of eating more, which for me due to the Ofev is very difficult). I heard that prednizone makes you gain eight but taking a steroid just to gain weight is questionable.

    • #26021
      Rene Hakkenberg
      Participant

      Hi David, this must be becoming very difficult for you with so many opinions. I have IPF, diagnosed in 2017 but was probably there already in 2014. Now on Ofev 200 mg daily.

      My experience: Weill Cornell  hospital in NY December 2017  diagnosed reflux and was a potential cause of my IPF. Had Nissen fundoplication and lung biopsy in one operation. Lung biopsy showed IPF. After er a year I had reflux checked again and it was still there, so useless operation except that for 2 years I suffered the effects of the fundoplication: on the average once a week, mostly at night, feeling nauseous, vomiting  and a sharp pain in the Sphincter area, which is where they do the fundoplication. I lost 10 kg which makes me much below a healthy weight, but this may have been caused by there IPF and Ofev. So, not only was the operation not successful, it made things much worse, even though the surgeon was supposed te be one of the best.

      I would love to hear if anyone has found a way to gain weight (outside of eating more, which for me due to the Ofev is very difficult). I heard that prednizone makes you gain eight but taking a steroid just to gain weight is questionable.

    • #26026
      Ken Monroe
      Participant

      I have GERD and Barrett’s esophagus, along with IPF.  I had a fundoplication just over a year ago.  My GERD symptoms generally became much better, my lungs no longer feel “burnt” in the morning, my chronic esophagitis is gone and my Barrett’s is better (there’s no cure).  I take a low dose PPI in the m0rnings.

      I still have bouts of chest pain which I’m trying to figure out.  I believe they are related to some combination of gas and esophageal spasm.  I might need a dilation which is not that uncommon.  Common side effects are gas… and gas!  Some people may experience “dumping syndrome” or swallowing issues.

      Would I do it again – absolutely.

    • #26028
      Anne Philiben
      Participant

      Probably only result I had from the Fundoplication was I lost weight.  I believe my lung function diminished after general anesthesia. I’d try the omeprazole late at night first.

    • #26029
      Charles Whittington
      Participant

      If you need surgery, investigate the LINX implant instead of the fundoplication.  It looks like a pearl bracelet around the esophagus at the stomach entrance where the pearls are little magnets.  When you eat the device pops open and then shuts when the food passes.  I had mine in Jan. 21, 2017 at University of South Alabama hospital.  It is a one-day surgery and you can have a regular meal as soon as you wake up.  (The fundoplication requires a liquid diet for several days.)   I had my last Prilosec the morning of surgery.  Now I can eat salsa, spicy and Mexican food with no reflux.

      Since it is relatively new, insurance can be an issue.  Mine was covered because they also repaired a hiatal hernia.  The fundoplication requires a redo after some years.  The LINX does not.

      Downsides–  You must learn to chew your food better while getting used to it.  (It takes several weeks)  I had difficulty with stringy chicken breast and gummy fresh bread.  It was difficult to swallow.  Now it is months between problems swallowing.

      You can not have a MRI greater than 150 tesla because it will damage the magnets.

      I have 5 small puncture scars from the surgery of which 4 are hard to find now.

    • #26052
      David Swain
      Participant

      My thanks to everyone who has replied and supplied such useful information on your own experiences with acid reflux and fundoplication. In view of the mixed comments I was of two minds whether to go ahead. However my consultant Respiritory dr has now strongly advised against it due to the relatively advanced stage of my IPF. He said the risks are too high. So I will seek further advice on overcoming the acid reflux with different PPIs or other medication. If anyone has suggestion, I will be pleased to hear them.

      All the best for better breathing

      • This reply was modified 7 months, 2 weeks ago by David Swain.
    • #26050
      Pete Besio
      Participant

      David,


      @davidaswain

      As I was perusing the clinical trials website, I came across this and thought of you:

      “The Role of Laryngopharyngeal Reflux in IPF:  https://www.clinicaltrials.gov/ct2/show/NCT03418350

      Not sure if it apples, or if your interested, but thought I would post it.
      Pete

      • This reply was modified 7 months, 2 weeks ago by Charlene Marshall.
      • This reply was modified 7 months, 2 weeks ago by Charlene Marshall. Reason: formatting to remove code , tagging
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