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    • #33499
      Kim Hetherington
      Participant

      Hi Everyone,

      I was wondering if anyone else has been diagnosed with IPF and then discovered they have a hiatus hernia that is causing reflux. I have just had an endoscopy and they have found I have a hiatus hernia in my lower esophagus and gastritis in my stomach.

      I experienced pain in my diaphragm shortly after having my children (now 18 and 16) and then periodic episodes of the same, but this went away after I lost weight several years ago. I only ever experienced acid in my mouth this August while on holiday and shortly after starting Ofev. Does anyone else suffer from reflux, GERD/GORD, and have they had an operation to correct a hernia? Do the symptoms then stop and can this also prevent scarring from progressing so quickly? I’d be interested to find out about other people’s experiences.

      Kim

    • #33501
      Christie Patient
      Keymaster

      @holly didn’t you have one that was repaired at the time of your fundoplication?

      • #33515
        Marian Kremer
        Participant

        I was recently diagnosed with a hiatal hernia as a result from a cat scan. The gastroenterologist I saw didn’t seem concerned about it. She asked if I had a cough. I do. She said most people who have a cough have a hiatal hernia.

      • #33962
        Kim Hetherington
        Participant

        Hi Denise

        Thank you for your post and I’m sorry for your diagnosis.

        I too have been altering my diet and the symptoms have more or less disappeared. I’m still taking a PPI (20mg) once a day, but I will wind down after Christmas. I avoid rich food but I am going to have some Christmas pudding tomorrow and I’m looking forward to a family Christmas dinner. Other than that, bland and low fat seems the way to go.

        My mum had rheumatoid arthritis and I know that people with RA can go on to develop ILD. However, I’ve had her health records through and there was no sign of ILD. So, I’m still curious as to how far IPF is caused by GERD, hiatus hernia or aspiration. Or, whether it’s something different all together.

        Let’s just hope that there is a cure, or at least medication that will stop it progressing in the months ahead.

        Best wishes and a Happy Christmas/holidays to you.

        Kim

    • #33502
      Holly
      Participant

      I was tested for GERD three years post-DLT, because of a very slow but steady decrease in Fev1 over the previous year. I had no symptoms of reflux, but the test did show reflux, so fundiplication surgery followed. They did repair a hiatal hernia at the same time, which I also had been unaware of. It was weird having surgery for a condition I really didn’t notice! It’s been nine months since surgery, and my spirometry results have improved a bit,and have remained stable. I also have few if any side effects from the fundoplication. I know my situation differs from yours, but hope this helps.

      • #33505
        Kim Hetherington
        Participant

        Hi Holly

        Thank you for letting me know about your experience. I was diagnosed back in January 2022 having had a cough for 12 weeks. It’s early stages but I’ve lost 4% lung function since January. I am still fit and healthy although a bit overweight. I’m desperately trying to get the weight off so that I can at least be considered for a lung transplant when things get worse.
        It’s reassuring that surgery can stop the reflux. I honestly put it down to gallbladder issues and wish now that I’d pushed for further investigation. That said, I don’t think anything would have shown up until recently in any case. My oxygen levels are stable between 97-99%. I really don’t want it all to be downhill from now and so your post has made me feel better and more positive. I will discuss it all further with my consultant when I meet up with them in December. I’m taking Lansaprazole (30mg) once daily and then Gaviscon before I go to bed. I sleep virtually sat upright.

        Strangely enough, I joined an online ‘cough’ conference earlier this year and one of the speakers told me that I was probably aspirating. I am glad that I attended the meeting and pushed for a referral regarding my oesophagus. I had helicobacter pylori several years ago but recent tests have shown that to be clear and so I have no idea what is causing the gastritis unless it’s the Ofev. Could it be the Ofev if it can cause stomach bleeds? I don’t want to come off the anti-fibrotics as they are a lifeline to living longer – I hope! Anyway, it’s reassuring that you are feeling good after surgery and that your spirometry results have improved. Onwards! Take care.

        Kim

         

         

        • #33528
          harvey d lamothe
          Participant

          I’m taking Esbriet and one of the side effects is GERD, so I take omeprazole 20 mg and my heart burn is pretty much gone.

    • #33503
      Jeff Taylor-Jackson
      Participant

      Hi Kim,

      Yes me too.

      After I was diagnosed I had a number of CT scans. That’s when they identified the hernia.

      There is a theory (UNPROVEN) that this may be the trigger for my IPF. Breathing in the acid and all that.

      I thought that everyone got indigestion, or as I have now been rightly informed, acid reflux. Asking my colleagues at work – all of them replied that they never had or get indigestion. Just me then.

      I am on 20mg of Omeprazole daily. I must admit I dont get the acid reflux anymore.

      I have not had or going to get the repair, it’s far too big an operation. However a friend of mine from the APF charity here in the UK has had a LINX sugery done. I need to catch up with him and see how he is after.  LINX is fitting a magnetic linked band around the hernia, it is done in a day.

      I cant remember the exact cost, but it’s not cheap that for sure.

      Kind regards

      Jeff

       

    • #33506
      Sreelekshmy
      Participant

      I have hiatus hernia which showed up in an abdominal CT shortly after my IPF diagnosis. My pulmonologist recommends eating 3 hrs before bed time and using a wedge pillow to sleep. I took Omneprazole 40mg for some time and later stopped taking it when i was found osteoopenic in the Bone density scan and had a stress fracture on my hips.

    • #33507
      Kim Hetherington
      Participant

      Hi Jeff

      Thank you for replying and I’m glad that you are not experiencing indigestion since taking Omeprazole. Are you on that long-term? I started to take Nexium while I was on holiday after the reflux episode but I had to swap to lansaprazole as Nexium clashes with Citalopram. I was on that for post-menopause anxiety and had weaned myself off, but then had to go back on it following my diagnosis. I feel as though my digestive system is being hammered by medication. Last year I was on ibuprofen for 6 weeks following torn meniscus in both knees. Thankfully, that has cleared up and no more ibuprofen is necessary. I wonder if that could have affected my stomach or just maybe it’s the hiatus hernia causing that as well. I guess I’ll get some answers from the medics soon.

      The hospital has said to stay on the lansaprazole for 4 weeks and then take only when required. I’m a bit nervous about not taking them as I have researched that PPIs may help to protect our lungs more.

      I hope you are doing well with your PF. Is it IPF in your case as well? I had never heard of this disease before. My mother had rheumatoid arthritis and I had wondered if that was the cause of mine but I have no inflammatory markers and they suspect my lungs will form a UIP pattern. Life!

      Take care.

      Kim

    • #33508
      Linda Del Degan
      Participant

      I was diagnosed with a hiatus hernia 30 years ago. I take periet. I’ve read there is a link, but does it contribute to the scarring? My respirologist mentioned it could be part of coughing at night. Between periet & diet I do not experience the acid reflux. I was told they only operate when the hernia is severe.
      Have you been told that having a hernia aggravates your condition?

    • #33512
      Kathleen Ryan
      Participant

      Hi everyone,

      I also have a hiatus hernia.  It was diagnosed about a year after my fibrosis diagnosis.  I take Nexium, but I’m often up at night with gerd.  I find that a gerd attack increases mucus and my cough. It seems the two are connected

    • #33513
      Kathleen Ryan
      Participant

      Hi everyone,

      I also have a hiatus hernia.  It was diagnosed about a year after my fibrosis diagnosis.  I take Nexium, but I’m often up at night with gerd.  I find that a gerd attack increases mucus and my cough. It seems the two are connected

    • #33514
      J L LaBrack
      Participant

      Very sorry to hear of your diagnosis. I believe that that type of hernia is called “hiatal hernia.” Noone should have to endure that on top of this horrible IPF. With the amount of coughing that we do, it’s no wonder we tear something open, though. Only way I see is to try to minimize the cough–easier said than done… Surgery is probably not an option for most.

    • #33516

      My hiatal hernia was found by CT during my work-up for PF. I started OFEV in September 2020. Within weeks I developed the usual side effects. About 3 months after starting OFEV, I developed abdominal pain. Liver function tests, gallbladder studies, EGD, and upper GI series were negative. I thought the pain might be due to the hiatal hernia and so I had a surgical consult. I thought the procedure would be simple, but the surgeon explained that it is a complex surgery and takes several hours. The surgeon was reluctant to operate because of my compromised pulmonary status. I did not follow through with surgery.

      About 6 months after the surgical consult, I stopped the OFEV for 2 weeks while on vacation. My abdominal pain resolved. All my OFEV side effects including diarrhea went away. Even after restarting OFEV, the pain and other side effects did not return.

      I have had GERD for years. The gastroenterologist who did the EGD prescribed Protonix 40 mg twice a day and fomatidine 20 mg before bed. This controls the GERD.

      My hiatal hernia is large, and I wonder if it impacts respiration. My internist said that it probably does not, but it seems to me that since part of the stomach is pushed into the thoracic cavity the lungs would be affected.

      We know that GERD may be a causative factor in PF. I hope that everyone with PF has a gastroenterologist or primary care doctor who aggressively manages GERD.

      Has anyone had their OFEV side effects decrease after a “drug holiday”?
      Judy

    • #33517

      Good evening.

      I was having acid reflux for the past 3 years then I got diagnosed with ILD. In the process of lung transplant test, My Doctor at USC KECK recommended Omeprazole for 2 months and the reflux despaired so he recommended a fundoplication to help. On August I got my surgery and since then my coughing are not intense as before, and the acid reflux is gone at this point, I’m not taking the pills anymore. God bless my doctor!!

       

      • #33523
        William Kim Burnett
        Participant

        I was on OFEV for two years but have now switched to Cell Cept because of high liver enzymes and Auto-Immune disease. The Cell -Cept will be used if my condition gets to transplant status for P.F. anyway. I do have Gerd spells usually after meals. (Diet is critical) but unusually not after bedtime. My status is good right now and am exercising regularly. Outside activities are tough and I wear a mask if any kind of yardwork (not recommended). I just had a E-Probe done last week and will be seeing my Gastro next week. Thanks for the heads up, my mom and sister both had a Hiatus Hernia so I suspect the same with me, I have also heard the condition can be hidden (no Proof) I might add that stopping the Ofev is risky but until my lungs get worse, I am happy to do without it in order to protect my liver as much as possible and to avoid side effects. I recommend that you get all labs done as the doctor’s order. May God bless you and heal you.

        William Kim Burnett

    • #33518
      Sheila D
      Participant

      Last year my Ct scan and endoscopy showed a 4-5 cm a hiatus hernia.i did 2 things that I believe helped me. I sta An anti-inflammatory diet. I also started 2x per day a regiment of ACV , 8 oz water and stevia. I stuck to it for a month. My acid reflux is gone, un less i eat like the old way.my pain in my hip has significantly been reduced. My next scan the hernia was noted as a sliding hernia, no size noted! It’s smaller!

    • #33524
      José
      Participant

      I am a IPF patient at end state. I also have the hiatus hernia and is no fun. My gastro doc told me that doing surgery is extremely dangerous and specially with IPF at my state which may cause collapsing of on or both lungs.

      omeprazol helps, but eats your bones. I do take one at least once a week when my reflux is heavy. But I also chew gum and a teaspoon of Arm & Hammer sodium keeps me sleeping all night.

    • #33525
      Thomas Johnson
      Participant

      I have suffered from a hiatal hernia for 30 years.  A daily dose of Prilosec/Omeprazole has controlled it very well.

      Tom

    • #33530
      Cynthia Malone
      Participant

      Yes I was diagnosed with both (IPF and hiatus hernia) also at the same time 2 years ago.  I have problems only with spicy food. I take no medicine other than being on oxygen full time. When I start to feel the burning which happens I will use a Halls sugar free menthol cough drops and it works great. I’m 79 and have not developed a cough yet.

    • #33561
      Michelle Johnson
      Participant

      I have a hiatal hernia and gerd I take omeprazole it really helps me I won’t have the surgery don’t want to be intubated I’m afraid the tube won’t come back out but maybe your hernia is worse than mine

    • #33941
      Kim Hetherington
      Participant

      Hi Everyone

      Thank you so much for all your replies and I apologize that I haven’t replied to each and every one of you and that it has taken me so long to return to the forum.

      My father died at the end of October and it has been a busy time organizing his funeral, plus I have two teenagers and a part-time job to juggle

      My heart goes out to all of you having this horrid disease and the psychological effect it has on us not knowing how long we have, worrying if our next lung test results will be as good or better than the previous ones, and not worse. Then the concern as to whether the anti-fibrotic drugs, or whatever we take, are working – or causing other problems.

      I am still waiting for my next appointment at Papworth hospital. I was told it would be December but guess it’s more likely to be January or February. The gastroenterology department has signed me back to Papworth and only suggested that I take PPIs for a further month and then only as I need them.  I have lots of questions for my consultant including whether having a hiatus hernia would disclude me from being placed on a lung transplant waiting list.

      I feel great at the moment but I have had my recent blood liver profile tests back and two of the areas have gone up quite a bit since June. I started the Ofev in September.  My Serum alkaline phosphatase was 76 U/L in June and is now 110 U/L. My Serum ALT level was 23 U/L in June and is now 71 U/L. Do you think this is something that I should be concerned about? My doctor has had these results for two weeks now and hasn’t contacted me. Again, I need to discuss this with my consultant at my next appointment.

      I do feel great at the moment. I FEV/FEV1 are 76 and 72 down from 78 and 74 at my first appointment back in April. However, I am not coughing, I can walk miles, I do find flights of stairs tricky but then I always have done. I wonder if I could have had this disease for years and it not been diagnosed. I was diagnosed with asthma aged 30 and I’m now 58.

      I have odd days where I feel overwhelmed and anxious about dying and leaving my family. I can’t bear to think about it. Mostly though, I am being positive and know that there are at least 2 new drugs in the pipeline that have been shown to stop fibrosis progressing and possibly even restore fibrotic lung tissue – Saracatinib was one of the drugs. Are those of you in the USA aware of this drug and do you know when it will be available for use? I really do hope there is a cure for this disease too.

      Regarding GERD and hiatus hernias. I read that up to 50% of the population have one and many don’t even know. So, I wonder how far GERD and hiatus hernia are connected to the development of IPF.

      I have had some good news recently in that I received my mum’s health records (she died in 2020) and she did not have pulmonary fibrosis despite having suffered with rheumatoid arthritis from the age of 21. She was 78 when she died. I hope that I can reach a similar age. Not sure how likely that would be – 20 more years, lol!

      My dad had COPD but had smoked heavily for years. It reassures me that I was with my mum for 9 days and nights and at the time she died and my sister was with my dad. I really hope that our NHS system here doesn’t collapse completely and I can continue to receive the Ofev and drugs to treat pain/anxiety at the end stage when my time comes.

      Anyway, on to positive thoughts. I wish you all a happy Christmas/holidays and a healthy 2023. x

    • #33959
      Denise Stogdill
      Participant

      Kim, I’m so sorry for your loss.

      I have had GERD and a hiatal hernia for the last 30 years.  I’ve also suffered with Rhuematoid arthritis for the last 10 years.  The first couple of pulmonologists that saw me told me that my pulmonary fibrosis was caused by my RA and my Gerd.  I was diagnosed with PF in March 2021 so I’ve only known of my PF for close to 2 years.  My third pulmonologist did a lung biopsy this  year and determined that I have ILD with associated RA.  What this means is that my fibrosis is neither caused by my RA or my Gerd.  At this point, my hiatal hernia has not been an issue.  However, as a preventative I take Omeprazole in the morning and famotidine at night.  I’ve changed my diet completely in the last two years and that has kept my stomach issues at bay.  So in my case, the hernia nor the Gerd affected my fibrosis.  Good luck to you in your journey!

    • #33968
      Nina Merendino
      Participant

      I was diagnosed with interstitial lung disease in 2018 and they did a endoscopy and found out that I had acid reflux as well. I have I have been put on oprazalam and doing fine. I have had acid reflux many times over my 69 years. Don’t think it caused the fibrosis.

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