Indigestion & Acid Reflux

[Sheila Blanchard]

Hi Kathy I get acid reflux a lot, I try to watch what I eat but as I don’t eat much anyway it can be hard. I have been thinking of getting an adjustable bed but I will try your remedy to see if will help me.thanks Kathy

 

[Charlene Marshall]

Hi Sheila,

I struggle with this on occasion as well, and an adjustable bed might be a good idea – although a hefty investment. I haven’t tried the no eating 3-4 hours before bed either, but am going to try it now that Kathy has mentioned it. Another thing I’ve heard about from lots of folks is the foam wedges and sleeping with one of those under your shoulders to prop you up a bit. This helps with the acid reflux and cough relief. Apparently they can be found on amazon. This is something else on my list that I need and want to look into!
Best wishes to you 🙂
Charlene.

[Lesley Scheerle]

Hi to all acid reflux suffers. It’s been my curse for so many years I can hardly count back that far. I too don’t have anything to eat or drink after 8p.m. But I have one exception. I have a full glass of water before bedtime to hopefully dilute the acid in my stomach. It seems to work well. Another thing I have done is buy a “WEDGE PILLOW” for bedtime. I even put another regular pillow on top of this one to be as elevated as possible. It takes some getting used to, but helps a lot. Lesley

[Charlene Marshall]

Hi Lesley!

It is so great to hear from you – Ive been wondering how you are, and glad you’ve reconnected with the forums. Hopefully you’ve been busy enjoying yourself and not online much due to that 🙂

Sorry to hear of your acid reflux struggles – this must be super frustrating for you! I mentioned the wedge pillow idea above in my response to Sheila, before I’d read your comment. I remember you  so kindly sharing this with me and others, saying it was very helpful for you. I do have to look into this, I haven’t done it yet, especially if you say it alleviates the coughing. This is what I struggle with most at nighttime now and the dry cough seems to be getting worse. Thanks for the reminder!

Hope you’re doing well!
Kindest regards,
Charlene.

[Robin Hollowell]

I was diagnosed with Pulmonary Fibrosis this past December.  My Dr is referring me to Johns Hopkins, as he has not labeled it IPF as yet.  He said that I do have reflux, although I really haven’t had the classic symptoms.  The gastroenterologist said that my reflux would not be the cause of the fibrosis.

I am now on medication for reflux and actually notice more symptoms of it now.  Not eating too late before bedtime is more of a challenge than I realized.  I am doing better at it though.  I did purchase an adjustable bed made by Serta.  Surprisingly, the cost was not that bad.  I love it, and can’t imagine why I hadn’t purchased one years ago.

 

[Charlene Marshall]

Hi Robin,

Welcome to the PF forums, and thanks for contributing your comments. Although I am very sorry to hear of your PF diagnosis last December, please know you’re among friends who share similar experiences on this site. Has anyone in your family ever had PF, or did you work/live in an environment where your lungs  could have accidentally been exposed to mould or other toxins? Hopefully the specialist at Johns Hopkins can give you some more answers, and good to know that the reflux is not the cause of the fibrosis. My Mom struggles with acid reflux really bad, although has no issues with her lungs, but I do worry about it impacting her lungs in the future.

You notice more symptoms of the acid reflux since starting the medication for it? Is it an over-the-counter medication or prescription?

So good to know about the adjustable bed, I know Sheila is interested in maybe purchasing this so hopefully she reads this comment 🙂 Glad the cost wasn’t astronomical too! If it helps then I suppose it is worth it, right? Glad you’ve found this remedy for you!

Thanks again for sharing and I look forward to getting to know you more throughout the forums.
Kind regards,
Charlene.

[Charlene Marshall]

Hi Kathy,

Thank you so much for posting this topic thread, as it seems many people have experienced something similar to you or have found your post very informative.

Sometimes Dr. Oz can have some interesting show topics, and validity in his guest speakers and topics on the show. I haven’t watched his show in forever, but I too would have been interested in this topic. Oddly enough, I’ve never been asked about indigestion or acid reflux and for almost a year between the onset of symptoms and my diagnosis, they thought I had adult-onset asthma. I am also sick of coughing at night, or any time I lay flat, so I’ll try to avoid eating 3-4 hours before bedtime as well. I also try to have a lighter meal for dinner generally to avoid feeling full longer or closer to bed time.

In addition to your x-ray, did you ever have a high-resolution CT scan as well (HRCT)? I know this can be very informative in the diagnosis process too. Interesting that you thought your wheezing and lungs seemed so much better and then the x-ray revealed IPF, such a bummer! I think it is a good idea to still protect your lungs from reflux, I agree with you there, so thank you for sharing. I am going to adopt your no food for 3-4 hours before bedtime rule and see if it helps me.

Thanks again for sharing Kathy. It’s great to hear from you and I hope you’re doing well!
Charlene.

[Fitri Topikal]

daun kenikir untuk asam lambung very interesting./ thnks

[Charlene Marshall]

Artikel menarik, matur nuwun. Wong mungkin kudu nerjemahake sadurunge sadurunge bisa maca kanthi lengkap. Salam, Charlene.

[Michelle Lantis-Harms]

Has anyone tried getting a prescription for an adjustable bed to see if insurance would cover it? It was just a thought as I have seen insurance pay for some pretty odd things. Just throwing that out there.

[Charlene Marshall]

Hi Michelle,

Thanks for your post and your contribution to this thread. This is a good idea, I know some patients with PF have benefited from being raised up to help reduce their coughing. It would be really nice if the cost of a raised bed would be covered by insurance, I agree! I haven’t heard of anyone doing this but good idea. If anyone has tried this, please do let us know.

Warm regards,
Charlene.

[Jennifer]

Hi Michele, I am new to this forum due to being diagnosed with IPF  last month. I sleep on wedge pillow, with another one on top of it, to help reduce my reflux. Going to my  pulmonologist  This Thursday to get the results of the HRCT that was done in October. I don’t know if there is any connection between the two but hope to here some answers. Sure would like to know about the sleep numbers bed and insurance myself. It would so help our reflux battle. Jennifer

[Charlene Marshall]

Hi Jennifer,

Thanks so much for contributing to this topic thread, although so sorry you’ve joined us with such a recent diagnosis. This disease is so cruel, isn’t it? How did your follow up with the HRCT go yesterday? I’ve heard lots of people say their doctors have made a connection between IPF and reflux unfortunately, so hopefully there is something you can do to alleviate any / all IPF-related symptoms by addressing the reflux. Sleeping with a wedge pillow is a great idea, I’ve heard of a lot of people doing this!

Warm regards,
Charlene.

[Raymond C. King]

Hi,

I have been reading this forums posts and I would like to share some information that might help anyone with the acid reflux problems. I have had the Acid Reflux problem interment for over 50 years. I have had 3 Hiatal Hernia operations locally and even one other at Mayo Clinic to try to help with the acid reflux problem.

In early 2011, I had one Hiatal Hernia operation that ended up causing me to have a frozen stomach requiring me to now take all my food supplements and medicines through a J-Tube that bypasses my stomach and goes directly to my small intestines. In late 2011, Mayo Clinic tried to help with the problem and have determined I have no Hiatal mussel therefore I have a straight shot from my mouth directly to my stomach, so stomach acid can flow freely from my stomach to the esophagus causing the acid burn.

Since 2011, I been sleeping on my back with my upper body elevated approximately 30 degrees in a hospital type bed. This has helped but I still get the night time acid reflux burn. Naturally my regular Gastroenterologist has me on Nexium 2 times per day to help reduce the acid but that doesn’t always help. I still get the reflux especially if I accidently slide down a little in the bed while I am sleeping.

Now for what I have that seems to help with the nighttime Acid Reflux.

While I was in the hospital about 6 weeks ago getting a new J-Tube replacement in my belly, the hospital Gastroenterologist was visiting me and I told her of the acid reflux problem I was still having. She said, “you have the same problem my husband has had for years and he has been taking a non-prescription pill and he swears that it has helped with that problem”. She said, “I don’t remember the name of it but if you call me, I will find out and let you know”. I called her a couple of days later and she told me “it is called EsophaCool by LifeExttensions.com. At LifeExtensions, the price was $9 for 60 tablets. I purchased a bottle of it from Amazon.com Prime for a little over $10.50. That costs about $0.17 per tablet. I bought it at Amazon because I have Amazon Prime and that gives you 2 days free shipping and I could get it faster. I have tried using EsophaCool for about 3 weeks. When I chew 2 tablets at bedtime, I have never had acid reflux at night. I tried just taking one chewable tablet at night and I woke up during the night feeling I was starting to get the reflux problem and then I chewed another and went right to sleep the rest of the night. From now on, I’m not going to skimp on chewing the 2 tablets. After I chew them, I usually sip a little water to wash them down. They have a medium licorice taste, so if you don’t like licorice after taste, you may not like them. Somewhere, I have read that taking black licorice helps people with acid reflux problems and this tablet doesn’t say it has any licorice extract in it, but it tastes like it. Anyway, you might give it a try if you want. Maybe it will help.

I do have a lot of medical problems and take lots of medications. I guess it comes with being 83. I also have IPF and I am trying to take Esbriet for that. Starting Esbriet ended up with my having a bleeding stomach ulcer, so I have stopped for it to heal for 30 days. I think I am a Guinea pig for the company that makes Esbriet as I must take it crushed and inserted into my intestines. Esbriet doesn’t know if it is possible to be taken that way. All they know is it must be taken uncrushed and with food. I can’t eat food, and the crushed Esbriet bypasses my stomach, so Esbriet doesn’t know what that may cause. My Pulmonologist wants me to try again shortly anyway but to take the recommended doses at a slower rate. He isn’t sure if I can ever work up to a dose that will do me any good. Time will tell.

I hope any of this helps. Good luck with whatever you try.
Ray King

[Charlene Marshall]

Hi Ray,

Wow – thank you so much for sharing your experience with this. For those suffering with acid reflux, this really could be a game-changer for them! I hope they also find the chewable EsophaCool helpful, what an “easy” fix if it works for others (sounds positive for both you and the Doctor’s husband). I truly hope others can try this and that it is effective for them, thanks for sharing the experience of getting it off Amazon Prime as well, including the price and how many tablets to take. I’m so glad at least this symptom is being managed for you – you deserve something to go right for you! I noticed you posted about the re-start of Esbriet as well, I’ll respond to that in a moment and am really hoping it is going okay so far. I’ve been thinking of you!

Sorry for not being able to reply as thoroughly as before, I’m taking on additional duties/responsibilities within the Pulmonary Fibrosis Forums and News columns, but I often wonder how you’re doing. Things here are going pretty well, I started a new pulmonary rehab regimen that I think is helping me breathe a little deeper which I am happy about. The cooler weather here now that autumn is upon us is also welcomed, although the dampness (it’s been raining for days!) can subside anytime soon!

Hope you’re doing well and chat with you soon,
Charlene.

[Sheila Blanchard]

Hi Charlene, I did in fact purchase a adjustable bed it has helped my acid reflux at night but still have it during the day. I am also on a CPap machine which may be helping also. I had an appointment with my pulmonary Dr. and the results of my tests showed that my Fibrosis has not gotten much worse just a little so that was good news. Lately I have noticed pain in my shin bones does anyone else have this? Or maybe it is not because of my IPF.

[Charlene Marshall]

Hi Sheila,

Thanks so much for sharing this with us, it sounds as though an adjustable bed might be an option for folks who struggle with nighttime acid reflux. Where did you purchase it, and/or did your insurance cover any of it? Did you start on the CPAP because of the acid reflux, or to help more with your breathing from IPF? I’m really glad to hear that the fibrosis in your lungs hasn’t progressed too much, that is good news! In terms of pain in your legs, I have this often but generally it is throughout all of my legs. I actually have tried different remedies to help alleviate restless leg syndrome, but nothing significant in terms of anything being able to help. Is this a new side effect for you? If so, probably best asking your doctor about but I would imagine it could be IPF-related based on the leg pains that I (and I know others as well) have experienced.

Goodluck!
Charlene.

[Jea Graitch]

Hi Everyone,

I know it has been tough dealing with acid reflux together with indigestion and IPF. There have been several ways to ease the pain including the choice of pillow to be used when sleeping. Having the best pillow to take care of your acid reflux, indigestion, and IPF will definitely make your sleep soundly.

Below is a link of an article to know which pillow suits you better.

I hope these pillows will help you eliminate the pain causing you while sleeping or just resting in bed due to acid reflux and other ailment related to it.

https://softerpillow.com/best-wedge-pillow-for-acid-reflux/

Best,

Jea

 

[Charlene Marshall]

Hi Jea,

This is a really interesting link, thanks for sharing it. I know several members of the forums have mentioned their use of body pillows or other “prop-up” pillows to help them with indigestion, along with reducing the chronic cough of IPF while sleeping. Hopefully this link helps them as well – glad you’ve joined our forums and thanks for sharing 🙂

Cheers,
Charlene.

[Raymond C. King]

Hi Jea,

I read your post on the wedge pillow. I have had one that appears exactly like the basic one that you referred to for several years. I only now use one when I travel.

The things that I didn’t like about it is: I find it uncomfortable for my head. The foam makes it kind of hard and I have to use another softer pillow for my head. If you use an extra head pillow, it forces you to slide down a little on the wedge, so you lose some of the wanted elevations of the upper part of your body. You can’t slide the pillow up higher as it will fall behind the top of the wedge unless you pile other pillows or items behind it for the extra soft pillow to lie on. Another problem I have is while asleep on it, you tend to eventually slide down on the pillow.

The only remedy I found was to rent or purchase a bed that will let you elevate your head and feet. After you set the upper body where you want it, you still need to elevate the feet too. This makes a pocket for your hips and stops you from sliding down. I rented one from a medical supply store for almost a year before I purchased 2 of the adjustable beds from COSTCO, one for me and one for my wife. You can either use them like a single bed slid together or place them like twin beds in different locations.
They have a variety of them there. It was delivered to the house and set up for us before they left. They come with remote controls. My son and daughter later purchased a couple for their house also.

I note that they are also available at Amazon too. I think they don’t come with setup though. I imagine you can get them at other places. We just searched online for them when we bought them.

I don’t know if you read my October 31, 2018 post above, but I referred to my trying EsophaCool Since the middle of August 2018. It is non-prescription. I have still been chewing 2 of the tablets with a little water each night at bedtime and I haven’t had any acid reflux since. I don’t know what makes them work but for me, they seem to work. I don’t have any reflux problems in the daytime, so I haven’t used them, but a person can the label says. On my visits to my family doctor and Pulmonologist, I told them about what they had done for me. They both told me to bring the bottle on my next visit, so they could see what it was, so they could maybe suggest it to some of their patients. They kind of have a little liquorish taste. My pulmonologist said he thinks the problems I have had with the acid reflux is what caused my IPF.

I purchased my esophageal at Amazon:
https://www.amazon.com/Life-Extension-EsophaCool-Chewable-Tablets/product-reviews/B07C9H3M4N/ref=pd_lpo_vtph_121_tr_cr_0?ie=UTF8&refRID=8PJVT4PWGJEFK4B68QYD

You can also get them at the company that makes them at LifeExttensions.com:
https://www.google.com/search?ei=jOMPXNb-KbTs9AOmq4DIAQ&q=lifeextension.com+EsophaCool&oq=lifeextension.com+EsophaCool&gs_l=psy-ab.12..33i22i29i30.115066.115066..116934…0.0..0.94.94.1……0….1j2..gws-wiz…….0i71.8-h-BSBpIWw
https://www.google.com/search?ei=jOMPXNb-

Good luck with whatever you try. The reflux problem is sure a pain to put up with, as you know. I have tried about everything on the market to try to stop it. I have been taking 2 prescription Nexium pills per day and other things to help relieve it for years to help combat the Acid Reflux. I hope the EsophaCool and other things to help relieve it continues to work.

Keep us posted on what works for you.

Ray King

[Charlene Marshall]

Thanks for sharing all this helpful information Ray, and I am so glad to hear that the EsophaCool is still working for you! I remember you sharing that information with us a few months back, and am glad the update you’ve written to Jea says that they’re still working for you. I do wonder what it is that makes them so effective, but the most important part is that they are helpful 🙂

Thanks for the information about the beds as well, I know this would work for a few others who are struggling with the indigestion and IPF. Glad you’ve found something comfortable that works for you.

Charlene.

[Forrest]

I have a question perhaps the form people might advise me on.  I have been diagnosed with IPF since May of 2015 and am currently on oxygen 24/7 at about 2 l/m, and am doing quite well.  Last summer (of 2018) I went through Pulmonary Rehab here in Portland, Oregon, where I live and I would recommend it highly to every IPF patient.  There were 24 secession, two secession a week for 3 months.   In the first secession I started walking on the treadmill using my Portable Oxygen Concentration (POC) cranked up to 4 l/m – my usual procedure on the treadmill at home, but the nurses found that my O2 stats were dropping into the mid-80% and they were alarmed.  So they put me on continuous flow O2 from a tank at 4 l/m, and the difference between the POC pulse O2 and the continuous flow O2, both at 4 l/m, was significant: even walking at 5% grade and 3 miles/hr my stats stayed over 90%.   Now science has shown clearly that if there IS a wounder drug, it’s excersize.  But the studies of Pulmonary Rehab show that those who go through rehab improve significantly during rehab, but drop back to slightly lower than before in the months after; and I fear I am falling into that same problem, not because I don’t have the gym facilities where I live – I do, but I don’t have access to portable continuous flow O2 when I excersize!

I need my POC when I am out of the house, and it also allows me to fly, something I can’t do with O2 tanks.  But Lincare, my O2 provider, says I can’t have both a POC and the small portable O2 tanks I need to excersize properly!  So my question is, has anyone else in the form had a similar problem, and if so, how did they solve it?

[Charlene Marshall]

Hi Forrest,

This is a really interesting post, and something for folks to consider. Thanks for sharing your experience with pulmonary rehab – like you, I found it extremely helpful and beneficial went I also went through a 12-week program. I’ve since done it again actually and continue to learn more each time I attend. Will there be an  opportunity for you to complete another session of pulmonary rehab in the future, do you think?

Regarding the POC vs. tanks, I ran into this problem as well here in Canada. Unfortunately, my option was to have the 02 tanks covered or a POC from my oxygen provider but not both. Having both was considered a “luxury” (as if, right?) and both wouldn’t be covered. It sounds like you still like to fly/travel, and I do as well so it was really important to me to have a POC but I had specific needs/uses for the o2 tanks as well (ie. continuous flow) and couldn’t buy those. As a result, I chose to purchase my POC which was expensive but now it’s mine and I don’t have to worry about going without o2 tanks because my oxygen provider still covers those so I have them for my needs, and then I travel or take the POC on errands/out of the house. I know not everyone has the financial means to purchase a POC, but this is the route I went and I’d highly recommend it. Not sure if this helps at all? Just make sure the one you purchase is right for your current o2 needs and if possible, can grow with you if your needs increase. Hope this helps a bit. Feel free to connect anytime!

Warm regards,
Charlene.

[Jacki Baum]

I too suffer from acid reflux, have for years but is much worse since my diagnosis of IPF. I now get violently ill at times.  I take 40mg of perscription Omeprazole before I go to bed at the direction of my Dr.  Sometimes we eat later and then I may have a problem.  We have an elevated bed and it does help.  Of course, like the rest of you, I worry that all that acid is hurting my lungs.  Had an endoscopy and colonoscopy a few months ago since I was having acid reflux and diarrhea.  All was normal, so I was thankful.  I am not on oxygen and take 100mg of OFEV twice daily.  Was on 150 but the side effects were too debilitating so my Drs lowered the dosage.  Told me it was not as effective but the quality of life was more important than longevity.   My choice.

[Charlene Marshall]

Thanks for sharing Jacki, glad you’ve found a balance of prescription medication and the raised bed as helpful for you. Has the reflux significantly subsided since you’ve implemented these “tools”? Glad the smaller dose of Ofev is better for your side effect management as well. I’ve heard of a lot of folks going down to the 100mg vs. the 150mg due to the quality of life they get with the lower dose. Keeping my fingers crossed that it continues to be effective for you.

Warm regards,
Charlene.

[Brian Sowter]

Hello everybody

I live in the UK and have a very unusual form of reflux because it has been caused by an operation I had 50 years ago.  Highly selective Vagotomy… for stomach ulcers before the invention of modern antacids.  The vagotomy was not selective enough and it has destroyed the functioning of my Lower Esophageal Sphincter.  The operation also disabled my Pyloric sphincter at the bottom of the stomach.

I recently had an impedance and manometer test and the result was a DeMeester score of 115 (the normal 2 sigma result is 14).  Se very unusually bad!

I only got a good diagnosis about 2 years ago at the same time as my IPF was diagnosed. Till then I was having dumping syndrome and all the symptoms of reflux…chest pains sore throat croaky voice, runny nose, and almost certainly, IPF.

I now practice extreme management of the reflux.  Diet, mini meals, max dose of 3 kinds of antacid, not lying down within 3 hours of eating or drinking. Sleeping on a sloping bed.  no tight clothing etc.  I take Ofev for the IPF.

I feel very well these days and my IPF has not got any worse.

I know this will be of minimal help to most people with IPF and I am sorry for that.    I just hope that good management of reflux may help somebody.

To any UK readers may I wish you a happy Brexit!

[Charlene Marshall]

Hi Brian,

Really interesting information shared, although so sorry to hear the reflux problems resulted a secondary issue from your previous surgery. Sounds like you and Ray both ended up with reflux issues following the same/a similar surgery. Your tips on how you manage it, which you outline below, will certainly be helpful to others I am sure. Thanks for sharing those, and wishing you the best at continuing to manage your reflux and IPF.

Take care,
Charlene.

[Raymond C. King]

Hi Brian Sowter,

It sounds like you have been experiencing the same problems and use some of the remedies that I have been trying.

I too had a partial Vagotomy performed on my first hiatal hernia/fundal plication surgery back I 1973. The Vagotomy used to automatically be done on the earlier hiatal hernia surgeries to prevent the buildup of stomach acid. They have later learned that many bad things can happen when they cut those nerves. I think my main stomach vagus nerve hadn’t been cut until my second hiatal hernia surgery in 2011. That surgery also caused my Gastroparesis and 80% paralyzed my stomach and the surgeon also punched my ectolophs too. I ended up after that surgery going to Mayo Clinic in Phoenix Arizona where they again tried to redo the previous hiatal hernia surgery and tried to readjust the Fundal Plication part to tighten it up to recreate the destroyed upper stomach sphincter. It didn’t work, and they told me that I now have a straight shot from my mouth to my stomach. That is when my Gastrologist prescribed the two Nexiums (now prescription Omeprazole because it is cheaper) two times per day. I guess the Omeprazole helps but I still had some acid reflux problems and I have been doing things to help eliminate them. See my earlier posts.

I imagine my pyloric sphincter was damaged during the several Hiatal hernias that I also had. I have never been told that it was damaged but sometimes at night, I get nauseated and throw up. What I am throwing up it does not contain regular food particles. I throw up what looks like the contents of the Neutron feeding that I am taking into my intestines all night thru a J-Tube. There is no way the Neutron should be getting back from my little intestine into my stomach if the pyloric sphincter is working.

I also developed the chest pains, runny nose and had a dry cough. That is when my regular doctor took x-rays which later was determined I had IPF. I had previously been taking prescription Norco (Acetaminophen & Hydrocodone) for the pain my J-tube was causing and hadn’t had the chest pains or a dry cough. After 5 years of taking the NORCO, I tried to wean off from it and that is when the chest pains and dry cough started. I later went to my Pulmonologist and he said a hard-dry cough was causing the chest pains and to try taking the Norco again. The pains and IPF a dry cough almost immediately disappeared so I am back on Norco 4 times per day.

I hope some of our posts help people with their reflux problems. It surely isn’t fun.

Ray King

[Paul]

Had acid reflux all my life, probably the cause of my ipf. I have struggled with acid reflux since taking esbriet. I have reverted to the old remedy is drinking baking soda with my dose of meds. Definitely works . Not sure of effect on meds. Advice?

 

[Charlene Marshall]

Hi Paul,

Thanks for getting in touch with us, and sharing your solution to dealing with the acid reflux since beginning Esbriet. I’d actually never heard of drinking baking soda to reduce this issue, and would imagine it is very unpleasant, is it? I know if it works then it is probably worth it for you, but I just can’t imagine giving that a try. I’d definitely check with a doctor about the effect on medications (if any) or what it could be doing internally to you as I think baking soda has some chemicals in it. It may not be alarming/concerning at all, I’d just want to verify that with a doctor ahead of continuing to do this. Best case scenario, it won’t cause any issues and you can continue using it as an effective means to managing your reflux. Sorry I don’t have any more to share regarding this, but do let us know if you follow up with the doctor and he/she says its fine for you to continue doing this and that it has no impact on the medication.

Goodluck, and hope you continue to do as well as possible.
Charlene.

[Josie]

Hello

Interested to see this thread, as I was recently diagnosed with both PF and with GERD. I’m now being referred for a gastroscopy (after the ENT found acid damage to my vocal cords) so that they can take a look at my oesophagus, stomach and small intestine.  It seems like there is an increasing amount of literature discussing the relationship between acid reflux and fibrosis. I was wondering if anyone had gone the surgery route to stop the acid reflux; i.e., fundoplication. And if so, did it slow down/stop the progression? I’ve heard there have been some promising clinical trials of this approach in the US.

Josie

[Charlene Marshall]

Hi Josie,

Thanks for getting in touch with us and good questions. Yes, unfortunately the acid reflux/GERD seem to be linked via both literature and other forum members’ experiences. Sorry to hear you’ve been diagnosed with both – did your doctor suspect the GERD causes your PF? Sometimes they suspect so, other times they don’t. Goodluck with your gastroscopy, I hope it reveals some information for you that is helpful in the management of your symptoms. Off the top of my head, I can’t think of any forum members who’ve mentioned having the surgery to reduce the acid reflux symptoms, but definitely connect with Ray (see below) who has dealt with acid reflux for many years. Wishing you nothing but the best.

Happy holidays,
Charlene.

[Raymond C. King]

Hi Josie,

There are a lot of articles on the Internet that will give you information on GERD and IPF. You can go to this link and it will give you a lot of information on it.

https://www.google.com/search?q=does+acid+reflux+cause+ipf&oq=does+acid+reflux+cause+ipf&aqs=chrome..69i57j0l3.15966j1j9&sourceid=chrome&ie=UTF-8

Here are a couple of the items listed from the above link:

1. IPF is strongly associated with gastroesophageal reflux disease (GERD), a condition where stomach acid flows back into your esophagus. It’s estimated that 90 percent of people with IPF have GERD.

2. Ulcers — Ulcers can form in the esophagus as a result of burning from stomach acid. … The acid can be inhaled into the lungs and cause a type of pneumonia (aspiration pneumonia) or asthma symptoms. Chronic acid reflux into the lungs may eventually cause permanent lung damage, called pulmonary fibrosis or bronchiectasis. Sep 4, 2018

Also, this forum seems to really help for getting other people’s experiences with IPF and its suspected causes.

You might be interested in a few of my earlier posts on this forum if you haven’t already read them.
Raymond C King: Participant
1. OCTOBER 31, 2018 AT 10:39 AM
2. DECEMBER 11, 2018 AT 11:21 AM
3. DECEMBER 12, 2018 AT 11:04 AM

I have had serious Acid Reflux Disease for over 50 years and several surgeries to try to stop it. So far, a few of them helped a little but I listed one pill I am taking now that helps well along with using other things at the same time, I think. I am still trying the non-prescription pills and will post it’s progressing as I use it for some time. Stay tuned!

Raymond C. King

[Charlene Marshall]

Thanks so much for such a great reply to Josie, Ray. I’m sure she will appreciate hearing about your experiences and what has been helpful for you. Its so kind of you to share! 🙂

Charlene

[Rene Hakkenberg]

Hi Josie,

I was diagnosed with IPF in 2017 but study of earlier CT scans showed IPF type lung scarring since 2014 which was missed by my doctors. When doctors were doing tests when they diagnosed the IPF it was shown that I had a severe case of acid reflux and as reflux is suspected, though not yet scientifically proven, as a cause of IPF my doctor suggested a Nissen Fundoplication. This operation resulted in major stomach functional complications, such as becoming ill about once weekly with vomiting and further unwanted weight loss. Recent addional tests (endoscopy, pH impedance, manometry and gammagraphy) revealed that the Fundoplication had failed and that the reflux was still there and that the stomach problems with vomiting were probably caused by stomach nerve damage during the Fundoplication. Redoing the Fundoplication was not recommended and I am now on acid reducer Landsoprazole, sleep with a wedge pillow and don’t lie down a couple of hours after eating. Lung function tests show that there has been no IPF deterioration since about one year. I believe that strenuous exercise, up to 7 hours per week of spinning, TRX, abs and breathing exercises (at reduced intensity, always using a finger oximeter and staying above 88% O2 saturation) has contributed to my IPF not getting worse. That’s why I strongly recommend to all you IPF sufferers to exercise as much as possible to make those damaged lungs work.

I wish you all the best on this Christmas Day!

[Charlene Marshall]

Hi Rene,

Wonderful reply to Josie, thanks so much for the effort and thoughtfulness that went into your response! This online community is filled with such wonderful people 🙂

Really glad to hear your IPF hasn’t progressed much, and that you’re still able to exercise, likely contributing to keeping your lungs as strong as possible. Kudos to you, as I know this is not an easy task when faced with a life-threatening lung disease. On this flip side of that, I am really sorry to hear of the complications that came from the Fundo surgery – how awful! Hope the strategies you’ve put in place since then are helpful with the reflux.

Enjoy this holiday season, and hope you had a wonderful Christmas.
Charlene.

[Josie]

Thank you so much Rene, Ray and Charlene for all the information. I hope you all had a lovely Christmas and are enjoying a relaxing Boxing day. Ray and Rene, I’m sorry to hear that efforts to alleviate the GERD have not been successful, and that surgery is not necessarily going to fix the problem. I’ve started sleeping a bit more upright, and taking PPIs in the morning as well as Zantac in the evening, but the reflux is still happening. My shortness of breath seems noticeably worse right now. Does it happen episodically, or does worsening mean more fibrotic activity happening? It’s got me rather anxious now, which of course doesn’t help either. I am trying to exercise a lot more, doing stairs and squats and so forth. But I don’t know enough yet about what is safe exercise. Are there types of exercise one should avoid with this condition?

 

All the best to you for the holidays.

 

 

 

 

[Charlene Marshall]

Hi Josie,

Thank you for your kind words – my Christmas was lovely, thank you and Boxing Day was quite relaxing, I hope yours was too! I couldn’t imagine fighting the crowds to shop like many people do on Boxing Day, that would drive me nuts. How was your Christmas?

In terms of the shortness of breath episodes, if I can share my experience, this tends to happen episodically for me if I am stationary and not doing anything physical. If I am exerting myself, ie. walking a long distance then unfortunately the shortness of breath is quite present. However, sometimes I find even sitting on my couch watching a movie, I can become short of breath and my heart really palpitates during that time too. Thankfully it doesn’t last a really long time and not all the time, which is why I don’t believe it necessarily means a worsening of the fibrotic tissue in my lungs. I’ll find that out in January though when I go back for my scan next month. Any chance you have a bit of a cold that might increase the shortness of breath episodes? Any congestion or sign of a cold, and I experience this.

In terms of exercise, do you have a pulse-ox reader? You should be really careful when exercising with this disease and should have your abilities assessed by a physiotherapist or doctor, even if you don’t feel like it is a struggle to exercise. This is because your oxygen may drop during strenuous activity without obvious symptoms of this happening and any sats under 90 means your other organs are struggling to get enough oxygen, potentially causing damage. Is someone always home with you when you’re exercising? This would be my other advice, just in case you experienced sudden light-headedness, etc. I hope I’m not overstepping by sharing this with you. I had my abilities assessed to exercise, both my breathing (and my oxygen requirements, which I always have to have on while exercising) and my heart-rate too.

Wishing you all the best, and please continue to keep in touch.

Warm regards,
Charlene.