GORDm reflux esophagitis, small HHm, depression - what would you do?

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To start, I will specify that I DO understand none of the forum members here are in my place and as such, they cannot make decisions for me. I am just curious about how people would approach the situation within my specific parameters, including mental health.

Any view will be much appreciated.

I am a 43 yo female (European but living in the US) who was diagnosed with GERD, reflux esophagitis (grade A/mild - said the dr.) and a small HH two years ago.

At that time I didn't fully understand the nature of this condition. I was just ecstatic to have been cleared of anything having to do with the "C" word - of which I am generally beyond terrified.

I also have GAD (generalized anxiety disorder) but have developed highly severe health-related anxiety over the past few years. The panic attacks that have resulted from various health scares since I turned 40 have been Indescribable. It seems to be ruining my relationship with my husband and children and greatly deterioriating my quality of life. Once I am cleared of a scary diagnosis (which my mind flies to IMMEDIATELY with any symptom that could ALSO be THAT), I get much better; but that's only until the next scare. I do not make up symptoms and do not just "imagine" things. They do happen - but turn out to be minor. For example, I recently had an "abnormal bleeding" episode. My mind panicked about uterine cancer until they proved it was just "perimenopause".

After I was diagnosed with GORD, I thought this was something temporary that was going to go away with the PPI round the GI had prescribed. I finished it and never looked back for almost three years. I did continue to have symptoms in the meantime, but I kept atributing them either to the HH (which I had been told is nothing major) or to a coming cold. Burps, sore throat, warmth in chest, food feeling like it's sticking. I even thought it was normal for everyone to sense some warmth in the chest coming from the stomach. I simply ignored these symptoms as minor and got used to them. I knew it had to do with the little thing I had been diagnosed a while ago but nothing major.

Recently, I had another more serious flareup of GORD. This time I went out there to read more about it - and I found out THE TRUTH.

It's not "minor". It doesn't just "go away" with a round of treatment. It is a chronic disease significantly linked to my biggest fear (the C word) - and one of the worst C-s, for that matter.

It is part of a continuum of digestive abnormality ranging from ocasional reflux triggered by a big meal to adenocarcinoma of the esophagus. Less serious stages (such as what my doctor called "mild GERD"wink can progress to something very serious. Mild GERD doesn't necessarily stay "mild", especially as people age. And apparently, I have been doing just that lately.

I panicked again. Went back to the GI doctor, he said "naaah...nothing major, get back on a round of PPI's and then do these rounds on and off. I asked "do these rounds on and off forever?". He said "yes, forever".

He discouraged surgery because it can work out pretty poorly. My GP also discouraged it.

When I asked about the root cause the GI said my reflux barrier (LES sphincter, diaphrtagm etc) is weakened. So it's a mechanical thing - and that spells "surgery".

1) I read everything about a lifetime of PPI-s and got scared. It doesn't control the reflux anyway - just the heartburn sensation.

2) I read everything about all surgeries currently available - it's terrifing no matter how you twist it.

Mortality rate less than 1% - and this is supposed to be reassuring when people hope to win lotteries with odds of 1 in a brazillion? Mindblowing.

I am not even sure how to read 1%.

1 in 100 people who get the surgery die? Or there is a 1 in 100 chance per one surgery event that that person will die as a result of it? Beyond scary. 

3) I read about doing neither 1 nor 2 - and just maintain strictly all lifestyle changtes and patch up with "naturals", for whatever they are worth for someone with a mechanical, LES sphincter problem); but I am stil scared because this is just hoping for the best and still NOT controlling the reflux. Doing virtually NOTHING - when this disease is progressive.

I already implemented lifestyle, "saintly" diets and the works - and it hardly helps. Now that I am able to recognize these symptomns and I am actually paying attention to them, I know I have reflux and heartburn all the DARN time. I am not sure why my dr. said it's mild if I get symptoms with every single meal, no matter how perfect and small the meal is.

If I don't do surgery, I know I will be doomed to a lifetime of heightened anxiety and scare about how much this disease has progressed. Zero quality of life. No Barrets as of now, but will it stay like this forever if my esophagus continues the cronic exposure to acid (and especially other matter coming from the stomach which PPIs don't address?). 

After all, the Barrets cellular change starts showing up later, early 40's is still too early to have developed.

I recently had my second endoscopy (with an ENT this time) because he was able to do it without sedation, through the nose. In the US, gastros put you to sleep and this terrifies me because with my mental condition, I am afraid I will never come back from the oblivion; so I said "no way" to another sedated endoscopy.

I just received a brief description of the lab results over the phone because I could no longer bear to wait until the appointment with the ENT next week. I begged the office to give me the results because I experienced another horrific panic attack over this.

Pathology is all good, the "no Barrets" status holds, but the person with whom I talked over the phone said the dr. saw a bit of redness/irritation at the bottom so I should still come to the appointment to give me his overall impression. I certainly will, with lots of questions - but it's clear it's the esophagitis again. Hopefully still grade A.

I had been on a PPI for 10 days prior to the endoscopy so maybe the esophagitis had already started looking better, if the dr. called it "just  a bit of redness, irritation". So did the gastro 3 years ago when I was first diagnosed.

This means I am doomed to more or less permanent inflamation in the esophagus, or at the very least - cycles of inflammation and healing with PPI-s. This is very likely to turn worse as times goes by. One day it might turn to Barrets.

I am already driven to panic with the odds of esophageal cancer for females with GERD, complications (esophagitis) AND a hiatal hernia.

In fact, these are very strongly linked to Barrets. Had I only had GERD with none of the other factors, my mind would have dealth with the odds much better. But the inflammation and the HH add to the odds for things to go downhill in the future.

My family keeps telling me to let go, think of the "small odds" and just get medication as needed - like the drs. say. They keep telling me "this is what all normal people do - and they just don't think about the small odds".

This is excurciating for me becayse my mind doesn't worj like this no matter how much I try. I keep needing to simply "fix" it.

Prevent the reflux from coming up  in the first place - period.

I have been 100% consumed with the lack of a decent options for months now. I am severely depressed. My husband is desperate, I can't talk to anyone anymore. This has ruined my life.

I feel like I need to do something. I don't want to look back years from now, after receiving a Barrets' diagnosis, and to regret having not had the courage to do surgery.

Horror stories abound on the Net about the outcomes of these surgeries. Then I think the enemy of "nothing scary yet" is "fixed" - just like the ennemy of "good " is "best" And I get scared again.

It's a horrible mental cycle. What would you do?

Thank you so much.

The

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  • Posted

    Hi Syracusa,

    Just wanted to let you know the surgery may or may not fix your or unfortunately offer a new set of symptoms. I had a 360 nissen fundoplication (hiatal hernia and barrettes esophagus fix) but for a different reason. My stomach was in my chest causing distress to my diaphragm so I had no choice. But now I have different symptoms than before the surgery abdominal cramps, dizziness, headaches, nausea, muscle aches and more and to top it off I have gallstones.

    I tell you this to do your research before deciding on surgery. There us a forum on this procedure as well.

    Jennifer

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    • Posted

      Thank you, Jennifer for replying In fact, I wish I hadn't spent so many hours over the past few months doing my research. I think I already know just about everything that can be known when it comes to options for GERD. None of them sound good.

      My dr. said "stop reading, you know too much".

      From all the side effects of the surgery what scares me most is:

      1. Not coming out alive (0.8% mortality rate? I think it's huge for the final outcome being actual death).

      2. Not being able to vomit aferwards ever.  (Ever?).

      3. Difficulty/pain swallowing. Given people eat every day, several times a day, this is very scary.  

      I can only assume many of the ones you mentioned might get better over time. How long has it been since you had your surgery?

      That being said, the side effect of doing nothing would be living in a constant state of anxiety and fear about the disease progressing, turning to Barrets, and then becoming even more scared as I face even higher odds. I am only 43 and usually, they find Barrets in people 50 and over. I am afraid to give it a few more years of reflux, enough for the Barrets to start forming.

      Most people are able to visualize the odds of Barrets turning to something bad as "small". Drs. themselves state these odds are small.  I just wish I could perceive them the same way.

      Odds of someone with GERD-related complications (esophagitis) and a HH turning to Barrets are already pretty large (about 20%).

      I alreay have these markers right now. If that happens, I will then have to deal with the 1% odds for "bad". 

      I feel like stopping reflux through surgery could get everything back to normal - esophagitis regresses once acid stops assaluting the esophagus.  I keep dreaming of a second chance for a clean bill of health.

      The fear has already destroyed my life - it's been two months of panic and things are not changing.

      I feel I am not doing anything to prevent progression. 

      One other thing I have is that for me, mental anguish and fear about possibke disaster is usually way more unbearable than actual physical discomforts that are not, however, lifethreatening.

      Some cramps, muscle aches, dizziness here and there I can proably deal with - as long as I know they are benign.

      Constant hovering threats of something turning to cancer is unbearable for me.

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  • Posted

    I will tell you I have had GERD for a bit not....Endoscopy clear....Am on Prilosec once a day...

    Have been taking inventory of myself..My BIGGEST problem is my anxiety attacks...It gets my acid going INSTANTLY!!!! Not to mention of course the triggers of spicy, coffee, even to much water...over eating...and for me EATING TO FAST

    I have been a fast eater since a kid and it is also a huge trigger

    My anxiety is worse when I have PMS and hormonal

    If you are having anxiety and panic as much as you say....you NEED to start with taking care of that...Light exercise....find a hobby....breathing exercise

    Because like I said...ANXIETY is my WORSE enemy in this acid reflux...and if you are sitting on line reading articles about all the worse possibilities then you will get a throat and mouth full of acid

    At the beginning my husband and coworkers and friends were getting tired of hearing me and would say...STAY OFF LINE AND GET OUT OF YOUR HEAD

    Once again....get the panic and anxiety under control and of course stay away from the certain foods that obvioulsy can give ANYONE heart burn

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    • Posted

      I am aware of stress...but it is very hard not to wonder how much destressing would do if I still have a HH and a damaged LES which cause esophagitis. ...

      It it is extremely depressing knowing there's not a thing you can do about it. Other than dangerous surgery. 

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    • Posted

      Hi I think you should really be on PPI medication every day at a dose that's safe but meets your needs and as long as you worry so much about it acid will keep coming up and burning you I know this because it happens to me and I'm on Meds every day for it at this moment in time I'm having a lot of burning my throat feels like it's on fire this is because I've had another Heath issue that im worrying about

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  • Posted

    Hi,

    I've had reflux issues all my life - from incidences I recall from when I was a pre-school infant - and I'm now 68. I (accidentally) discovered I had Barrett's 22 years ago (and had probably had it for many years prior) .

    If you manage your reflux now and reduce the acid to ensure the reflux is less damaging, you'll probably not develop Barrett's. And if you do, 95% of those with Barrett's will never see any progression of it. If any progression were to occur, the pre-cancerous dysplasia would be seen and it could be ablated to prevent cancer.

    It is wise to look at the research. But do be careful you look at authentc research: there are a number of publications and websites that purport to be authentic research but are usually anecdotal evidence unsupported and not peer-reviewed.

    The free book / website www DownWithAcid org uk is an encyclopaedia of everything to do with acid, reflux, complications and management and is fully researched (saving you the time) with hundreds of links to those research papers.

    PPIs are amongst the safest of drugs used by millions worldwide for 30 years. There have been some papers in recent years that appear to show links to chronic kidney disease, heart arythmia, dementia etc but these are correlations rather than any causal link. The page on "PPI dangers" under the Treatments / drugs tab of the www BarrettsWessex org uk website provides a balanced view on these claims.

    Long term, high dose PPIs can reduce your stomach acid inducing hypochlorhydria which will result in malabsorption of essential minerals which may need supplementation. And as you've discovered PPIs may not reduce reflux - just make it less harmful.

    I was on PPIs for 15 years, the last few of which on a very high dose (80mg omeprazole daily + supplemental Gaviscon as required). I suffered anaemia due to induced hypochlorhydria which, even though supplemented, left me lifeless unable to walk 50 yards without getting exhausted. And my reflux symptoms including chronic cough (seeing me practically pass out once or twice a day and sitting up for 2 hours in the early hours each night coughing and swigging too much cough suppressant) were getting worse.

    Eventually, in desperation, I requested, and received a fundolication. I had been offered one 20 years earlier (though then it would have been by open surgery rather than laparoscopically) and had been too scared to have it.

    The operation was the best thing I ever did. (You may read my blog of that on my personal website www ChrisRob co uk where you'll find it as item 7 under the Barretts tab. ) It gave me my life back. I no longer take any drugs and within a few weeks I was cycling 30 miles a day before breakfast.

    Obvioulsy I cannot make any decisions for you, but I suggest you may wish to look at the possibilities of reflux reduction surgery.

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  • Posted

    Hi,

    Oh dear you poor lady. I feel for you but please don't think you are doomed to die with GORD, that is far from the truth, there are so many symptoms connected to GORD the list goes on for ever,

    Taking ppi will limit the damage the acid can cause to you oesophagus which after many years could but may not cause pre C cells to form. Your anxiety is making your acid bubble up more and making you feel worse. Ppi isn't a miracle cure, if the sphincter is weak no matter what you eat or drink will trickle back up, ppi will just reduce the amount of acid attached to the refluxing food, so at bedtime proping yourself up helps it stay in your stomach.

    I'm 46 and had GORD most of my life and am too terrified of the C word, when I had tests done ( endoscopy, 24hr ph and manomatory tests) which found I had GORD and small HH which left could but may not cause Barrett I opted for fundloplication to fix it, I'm almost 13 weeks after op, still recovering which is a slow process but safe in the knowledge that the amount of acid coming up into my oesophagus is greatly reduced so reducing my chances of getting Barrett or C..

    I do hope everyone on this forum can put your mind at ease that you are not doomed.

    Best wishes to you.

    Margaret x

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  • Posted

    Wow, its literally like I wrote this post apart from the fact I'm 31 and haven't yet had official confirmation its GERD so I'm still in the stage of panicking its something else. I had some abnormal bleeding as well as back pain a couple of years ago. I convinced myself I had some sort of cervical, uterine 'c' but it turned out to be endometriosis. Not exactly a great alternative but the only symptom I've ever had really was the flare up of back pain after my second child and since treatment that's almost completely gone. I also seem to have big flare ups with stress but controlling that is easier said than done. I have my next appointment with the GP in just over a week because I'm not having much luck with the PPI's so far and hopefully they'll refer me to ENT then so I can get official diagnosis. I'm just so fed up of worrying. Like you its ruining my relationships with my husband, children, friends. I hope you find some peace and can fond the answers you need. Xx

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  • Posted

    Dear barrets and everyone, 

    thank you so much for your replies. It means a long to me since I have no one to talk to - my family just doesn't want me to talk about this anymore.minorety much feel abandoned. 

    i am walking around like a shell. 

    The more I read, including your posts, the more I understand it will have to be surgery so the actual reflux can stop. 

    I am also starting to suspect that there is a good chance I might be refluxing bile/alkaline stuff. 

     I often wake up with a slightly weird, very slightly bitter tested in my mouth. Not sour, not acidic. I even tested some saliva that i forced down from all the way down the throat, and it was very alkaline. 

    Inremember one one single recent episode where I literally felt liquid regurgitation arriving in my throat/mouth (I usually don't have that) and it did have a bitter taste as far as I remember.

    if bile is involved, that makes it even more likely that over time, cells will turn to barrets. They haven't yet but with everything I have, including HH, chances are they will. 

     My gastronwants me to forget all about it and look at this as something minor, but after reading my eyesight off, I know it isn't. 

    Ppis do not remove my symptoms. I still get burn, I still get lump in throat on and off throughout the day. The only reason i am taking them now is to heal the esophagitis...at least for the moment. 

    This can't continue like this. I need to do something to stop it. 

    On the follow up appointment, my gastro will have to listen to me about this, including my mental health - because my entire life has been crushed. Is need information about my les sphincter (how damaged is it), manomentry, ph test, bilirubin/bile in my reflux, etc.

    I can't just sit around and wait to get barrets. I do understand that even then, chances for things turning "bad" are considered small but if you were in my mind, the perception of danger would be unbearable. 

    For years, I have also suffered from fear of flying and I avoid flying every time it is humanely possible. When I cant, the torture I go through when I am in the plane is beyond belief. The chances of a plane crash are infinitely smaller than the odds of barrets turning into C every year. And yet, my mind perceives those odds as impending, inevitable doom. I have been like this for over 20 years, no counseling was able to help. So how could I hope that I could still be OK with barrets chances of 1% per year....

    Last night I read about the TIF procedure. What do people know about this? It sounds the least evil of all options out there. I had a glimmer of hope - but I know it is very new and not much data behind it. 

    Barrets i I will buy your book - and I am so glad for you that you had such wonderful outcome. 

    Do you still have any side effects of your surgey now? Can you vomit if you have to? Swallow normally, naturally? Any cramps? Burping? 

    I had so many horror stories about the fundo including complications leading to death - I just about fainted. The fact that both of my doctors discourage it is also extremely depressing. 

    I got a glimmer of hope with TIF. What do you know about it?

     

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    • Posted

      There are many new treatments for reflux (which you'll find described in the Down With Acid book), though none has proved as good as Laparoscopic Nissen Fundoplication.

      TIF (Trans oral Incissinless Fundoplication) is a form of endoluminal gastroplication using plication (or stitching) at the gastro-oesophageal junction via a special endoscope within the lumen (or oesophagus tube) .

      It sounds like a good idea. The best review (sponsored by the manufacturers, Endogastric Solutions) in MedGadget 2013, entitled, "EsophyX for Transoral Incisionless Fundoplication (TIF) Proves Itself in Trial" reported, "Twenty-four months after the EsophyX2® device was used in TIF procedures, more than two-thirds of patients completely eliminated the need for daily proton pump inhibitor (PPIs) therapy. Symptom control achieved at six months remained stable over time indicating durability of TIF procedure."

      However, A 2014 report published in the American Journal of Gastroenterology and reported in Medscape, "TIF Underperforming as Long-Term GERD Treatment" , concluded: "Although TIF resulted in an improved GERD-related quality of life and produced a short-term improvement of the antireflux barrier in a selected group of GERD patients, no long-term objective reflux control was achieved." Further, one of the doctors commentating on the findings stated, "Numerous uncontrolled trials have demonstrated rapid deterioration of TIF results. Since the TIF procedure does not allow mobilization of the gastric fundus, tension on the wrap causes the TIF fasteners to pull apart. The TIF procedure has no proven long-term benefit."

      LINX may be a better alternative but  have very serious reservations about that.

      A new device, endostim (described as a pacemaker for the LOS) is showing some promise. It's still considered experimental and although has CE approval for Europe has yet to receive FDA approval for USA.

      Laparoscopic Nissen Fundoplication (LF) is still the gold standard for reflux reduction. A study published in Surgical Endoscopy in 2014 reviewed the durability of Laparoscopic Fundoplication over 20 years and concluded, "Long-term results from the early experience with LF are excellent with 94 % of patients reporting only occasional or fewer reflux symptoms at 20-year follow-up. However, 18 % required surgical revision surgery to maintain their results. There is a relatively high rate of daily dysphagia but 90 % of patients are happy to have had LF."

      Despite the scare stories that have been propagated (many by Torax medical to promote their LINX device), you are able to burp and vomit once the scar tissue goes. It is reversible if necessary and, although I know dozens who have had the procedure, and surgeons who have performed the operatin hundreds of times, I've yet to meet or hear of one person who has had complications. But if considering it, you need to find someone who knws what they're doing - which probably rules out your two doctors.

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    • Posted

      Barretts,

      First, apologies for the many typos above -  I typed on my tablet wich automatically changes the words. 

      Thank you again for your helpful and clearly authoritative answers.

      I am still terrified at the thought that my only option is a step I could end up regretting and that culd take my life from miserable to actually wanting to end it. I have never been so terrified by a lack of options. 

      Staying as is is not option for me. I do have to clarify with my curent gastro what is the actual extent of my reflux. He says "mild" only because my esophagitis is "only grade A" so far and my HH is "small". Still, esophagitis and HH are major risks for things going downhill after 50. I desperately want to prevent that.

      I read your story on your site and I just about froze in place. While I never really had all the tough symptoms you described, I started out exactly as you did in childhood and later had others - including various weird hea;th scares, dozens of trips to the doctor, a family tat thinks I am a hypochindirac who blows everything out of proportion, etc.

      Lots of mucous as a child, always having to blow nose and getting A TON out of there, tonsils out, septum deviation surgery. NOBODY EVER EVER said anything about these symptoms possibly having to do with stuff that might be going on in the stomach. When I came to the US in my mid-late 20's, I was told "allergic rhinitis". "You're kind of allergic to your environment - just about everything, so you produce mucous".

      Oh, well - I said. Worse things can happen - after all I can just blow my nose. Did rinses at night, nose drop, etc.

      For almost my entire life I slept with my mouth open (because of stuffy nose), waking up with very dry mouth (I thought from mouth breathing at night). I apologoize for the gross factor in advance - but the weird part was that the first thing in the morning I would wake up with such coated, dry mouth that I needed to take sip of water from the glass I always had next to my bed, rinse and then spit all that out back in the glass.

      When I would make it to the kitchen, it was an absolute emergency (first thing I did) to have some kind of soury-acidic-sweet drink or food so I can get the dry, cottony feel emerging from my stomach completely out of the way. Things that worked was either citrus juice or some acidic fruit. Banana, for example, would absolutely not do. I have been doing this for over 30 years - mostly my whole life. 

      If I did not do that, I could not start my day. The moment I did this, the cottony mouth subsided, and I was able to start my day.

      I asked doctors about this repeatedly thinking it was candida.My family thought I was weird. "Do you really have to spit in the glass every morning - this is gross". 

      A former GP even took a swab of my saliva in the throat to check at the lab and said "no worries, all good - no candida".

      In my late twenties, now in the US, I was sitting one day eating grapes and then I got a sensation that one grape got stuck in my throat. Panicked, went to the ENT, he put a camera in there and said "nope, no grape, nothing stuck". I remember he did mention something about reflux and prescribed something like Zantac. I looked at him weird as I didn't remember having liquid coming up or what people call "heartburn".

      Besides,I kept reading how people with this kind of stuff need to avoid acidic foods and for me, there was nothing I craved more than acidic stuff: tons of salads with lemon and vinegar, acidic fruits, sour soups, etc. Acidic stuff for me felt fantastic - it's like it got my stmach back to normal from all that feeling of cotton-ness.

      So I just shrugged and said whatever. I don't rememeber if I even took that medication but I moved on - which is what I did when I would hear a doctor say "nothing bad".

      In the meantime, life happened - and with it many weird health-related episodes accompanied by increasing anxiety about "it" possiby being something "bad". Episodes of dizzness, vertigo - accompanied by runds to the dr. and need to have imaging tests to exclude brain tumor.

      As I mentioned earlier, in my teen years I developed an eating disorder. In a nut-shell, I would eat my heart out and distend the living lights out of my stomach with comfort foods. Did not understand the consequences - I just knew it was generally not good to eat that much but that was way to generic for me to stop the urge. his was the only thing that brouhgt me comfort and helped me cope with life - I will not bring the causes or psychological details here. 

      I also put on weight, of course - as I was not bulimic, ust an overeater. 

      I weighed about 184 lbs at 5'7", at the age of 18.

      Later, after I left my country and came to the US, I lost weight, got married, had two children.

      The health anxiety increased over the years. I started getting sick very often. I would catch colds which would go straight to my chest and give me bronchitis. Then antibiotics followed, the works.

      I also always had post-nasal drip and had to froce stuff out in the morning - sometimes it would be greenish. I was told it was because of "sitting there all night". 

      And then 40's hit and all H broke loose. A small fibroid caused a horrific scare. Then I had my first mammogram which was normal - but with the note "some scattered benign calcifications". Since then, I never had the courage to do it again, despite proddings for yearly screenings which are expected of all women after 40 in the US; just the thought of a bad result makes me nauseated with fear.

      Then, the Christmas of 2013, as I was recovering from an episode of bronchits with antibiotics, I started feleing a burn in the stomach and on my chest. This started happening right after a swallowed a pill. It got worse, with major lump in throat, belching, etc. I asked my GP to send me to a gastro.

      He did the endscopy, and this is when I got my diagnosis:

      GERD, small HH, grade A esophagitis.

      As I explained earlier, at that time I thought it was no biggie, because my dr. was so laid back about it. Plus I had been told "rhinits" before and this was nothing - so why not a little esophagitis? Both have "itis" in it . The dr. also said "your endoscopy loooed uch bettre than I';d expected, just a but of irritation down at the bottom of the esophagus". So the '-itis" - no big deal.

      He even said "you are my healthiest patient, stop worrying about this stuff, you are more likely to get breat cancer than what you worry about here". Waow - thanks for the reminder since I have my upcoming mammo lurking for 3 years now.

      And this is how three years passed with now classical symptoms such as lump in throat, some wet burping after eating (always) and a vague pain under my rib. I had come to consider all these normal, knowing it had to do with my very benign HH diagnosis and the tendecy to reflux.

      I did not understand the continuum of problems and the connection between the "little thing" I had been diagnosed with and the big "C" ... I thought those were 100% separate issues. I had also been cleared of Barrets and I assumed I could never get it if I didn't have it then.

      So that gave me two more years of relative sanity - not that other scares didn't happen in the meantime.

      Recently I had started to perceive warmth in chest and throat but as I said, I though I was coming down with yet another cold. And I also thought everyone gets that.

      I may have had it before but I don't think I ever paid attention to this feeling.

      Then more dizziness, more weird episodes - a half-hearted diagnosis of fibromyalgia by my GP (as in "I don't know what you have"wink.  

      So reading your story, Barretts, and thinking back to mine:

      - was I born with the reflux or the tendency to it? My early life was marked by nose problems.

      - did I cause it myself with the overeating over the years? The guilt is killing me.

      I Had always had a large appetite and although I had longer periods of normal weight, I had always been a bit overweight and prone to overeating.

      Now of course, I lost tons of weight too fast, my appetite is inecisttna dn I struggle to eat for fear of perceiving th acid forming and coming up. I

      I am within normal BMI again, but I am losing weight too fast and soon I will no longer need or want to lose anything.

      It sounds like Niseen is the only option.

      I am not even sure how to fund someone spectacular. I keep hearing you must select the best of the best but forums usually prohibit giving references and saying names.

      My current drs. (GP and gastro) would certainly not perform this  surgery even if I wanted them to.

      They are not surgeons - they just discouarge me from getting it and say it's a bad idea. This might be true for someone with a more relaxed outlook and without severe health anxiety. Some people can say "que sera, sera".

      This approach would slowly destroy me - daily. Because I feel I had the cance to avert disaster and chose not to do anything about it. 

      Trouble is I can't even risk a lifetime of PPI-s in good conscience because I have a feeling I might have problems with alkaline/bile/bilirubin reflux.

      I will beg my GI to let me have more tests (PH impendance test, manommetry for sphincter, Bilitec,etc) so I can better understand the extent of my reflux.

      Barretts, one more question: is it possibe to send you a private message?

      Thank you so much - I can't tell you how much I appreciate your support, now that I have literally no one to talk to about this.

      As I said, my whole family is extremely upset about my reaction to this illness, they don't understand the diangnsis, they say "it's just reflux", and they can't evewn beging to fathom the depth of the depression I developed when I realized what this is; they just want me to snap back to normal - and I absolutely can't, no matter how much I try.

      Thank you again.

       

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    • Posted

      So much f your story echoes what I had all my life.

      It's only within the last 20 years, doctors have at ast begun to understand this. I was told I had childhood catarrh I'd grow out of. I had ears syringed weekly. I had my tonsils and adenoids out. I've had my sinuses flushed several times. I've been tested (negatively) for all known allergies etc.

      It was about 20 years ago when I told my doctor my cough was worse when I had heartburn that he suggested stomach contents coming up the one tube could be going down the other. A revolutionary idea at the time but now recognised.

      You are welcome to PM me or email chairman @ BarrettsWessex org uk.

      Sorry I don't know about US surgeons but I do have US contacts who may be able to advise.

      All the best

      Chris. 

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    • Posted

      Again, I must apologize for all the typing errors in my previous post. The tablet plays tricks on me. Under normal conditions, I am a language snob; but with the way I am now, I can barely type without my hand shaking.

      I just wanted to add that almost a year after my GERD diagnosis, pneumonai hit. That was Christmas 2014. The previous year I'd had bronchitis, as well as the year before. It turned sinister when the ER doctor told me that I must come back to repeat the X-rays after antibiortics to make sure the white spots are all gone. When I asked why would it be necessary to do another X-ray after antibiotics (they cure pneumonia, right?) - she said they want to make sure, just in case pneumonia may hide cancer. She didn't know about my health anxiety or she wouldn't have said such a thing. A horrific string of panic episodes ensued...one night I descended into the scariest spiral imaginable.

      I am confused and angry and bewildered that doctors did not know the connection between respiratory and digestive system problems until recently. I still can't find excuses for my current doctors whom I specifcvially asked about this weird respiratory episodes qite recently - when the connection was apparently established. I even asked the doctors whether they think my immune syste may be impaired since I catch so many respiratory illnesses. She said no, it doesn;t mean your immune system is impared. They just shrugged as to why.

      My GP-s (sometimes I had to rotate several doctors in the pratice) were immediately informed after I received the GERD diangnosis in jan 2014 from the gastro; but they still didn't draw any dots between this and other conditions I kept seeing them for.

      Dizziness, pain under rib, muscle pain, etc.

      Earlier on, dad I been informed enough about reflux and what it can lead to, I could have at least controlled the overeating part. But I am still pretty sure I made it worse with this, even though I clearly had signs of reflux since childhood, well before I started overeating.

      Did you catch colds easily, Barretts - with asthma-like symptoms, coughs, bronchitis or even pneumonia? This has been my story over the past 5-7 years.

      Thank you again - I will donate to your charity will ask some questions in private.

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    • Posted

      It sometimes takes the medical profession a few years to catch up with what the latest research is telling them. And for those of us who have suffered this, we already knew it before the research showed it.

      Yes, I was always getting colds. Yes, I was suspected of having asthma. Even after I had discovered the link with reflux, prior to my fundoplication, seeing a different doctor at the practice, he prescribed me athma inhalers (which, of course, were useless) .

      The Down With Acid book has a chapter on ENT. Here's an excerpt: From a report in Respirology March 2014: "The persistence of chronic cough over time should alert physicians to the possible involvement of GER." and "Until recently, pH-metry was accepted as the gold standard for establishing GER as the cause of respiratory symptoms. But it has now been rendered obsolete by studies ... that confirmed the role of nonacid reflux in patients with chronic cough." putting into question the prescribing of acid suppressant medication to relieve reflux related respiratory symptoms.  "Remedial gastric surgery [is] indicated to control severe GER since fundoplication eliminates reflux of any kind."

      When I became involved 8 years ago with an on-line Barrett's forum I now moderate, a worried mum was describing her 8 year old daughter's condition. She ended up in the world famous Great Ormond Street children's hospital in London with life threatening bronchiectasis from reflux.

      But don't be too hasty to blame the doctors. They do have to keep up with so much. I work closely with the consultants. Two of them are trustees of my charity. I get notifications of two or three new research papers published each day within the very narrow and specific field of upper GI, particularly Barrett's & GERD, and just skim  the abstracts. They will also get papers on the full GI tract and other issues and have no time to skim through them.

      A few years ago, I did ask one of our consultants whether my dry eyes could actually be a further symptom of reflux. His reply at that time was that it's common when we have a chronic condition to blame any other coincidental condition on the primary one but he didn't think so. It wasn't until I conducted a survey of symptoms experienced by refluxers (as per attached graphic, and referred to in the Down With Acid book in the chapter on extra-oesophageal reflux) and suggested the mechanism, that he changed his mind. (And this has also recently been verified by a published paper. )

      So everyone is still learning about this - including me. And listening to patients (which is what I'm doing via these forums daily) is a good starting point.

      If you message me with your address, I'll send a printed copy of the Down With Acid book to you.

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    • Posted

      Forgot to attach the graphic.of prevalence of extra-oesophageal symptoms.
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    • Posted

      I cant believe you mentioned dry eyes! I've literally spent hours trying to research if there's a link. I've had dry eyes for months now. It started when my throat symptoms did and got progressively worse as the reflux symptoms did. I asked both my GP and optician who looked at me like I was mad. I think that's a big part of why I feel so tired - its the same dry gritty feeling of when I'm overly tired. I've pretty much had to give up wearing contacts!

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    • Posted

      Gemscott, I too suffer from dry eyes - there are a few reasons for this, it could be dehydration (need to drink more water) PPIs can cause it, iron deficiency and overly stressed. Also if the air is very dry, Heaters and air conditioners, can dry out the air.

      with me I found I need to drink more water, if I am out and about its hard to stay hydrated - often there's not to keep the fluid up.

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    • Posted

      From the Down With Acid book (chapter on extra-oesophageal reflux) :

      "From the top of the oesophagus it enters the respiratory system ... Rising into the nasal chambers, excess mucous produced here can cause post nasal drip producing cough ... From the nasal passages, it can pass to the eyes via the tear ducts resulting in dry eye syndrome."

      35% of refluxers experience dry or gritty eyes.

       

      Report

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