Terrified of esophagitis progressing to Barretts - what are the odds?

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i have gerd, esophagitis (dr. Says mild but a recent scope-based pathologyreport stated " chronic moderate reflux esophagitis"wink and a small hiatal hernia. 

I have had had severe depression for months over this. it began with the realization that this is a chronic disease for which there are no acceptable options ( medications don't fix it but destroy my kidneys instead,for which I already have some concerns as they no longer seem to function at 100%).

surgery is scary, has A significant mortality rate and everyone tells me "this is just a last resort, is your gerd THAT bad?). 

My family wants to me snap back to my former self just by accepting the risk of my condition. My mind doesn't work like this as it is extremely averse to risk and I literally walk in fear and depression every minute of my day.

I took ppis for a month to heal to esophagitis but I still got heartburn and symptoms.I don't know whether the esophagitis healed or not, but I stopped the PPiS because i completed the 4 weeks, they were not helping symptoms and i have a follow up on the kidneys soon. 

I am terrified of my condition progressing  to barrets.

what are the odds, with my characteristics ? 

43 yo female, small hiatal hernia, mild-moderate esophagitis, no info about ph or mannometry yet. Just the dr. Telling me it's "mild"and wanting me to just take  meds and live with it. 

I want to tell him to run these tests, hopefully he will agree. 

What at percentage of gerd sufferers with mild esophagitis develop Barretts?.

 

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10 Replies

  • Posted

    Hi syracusa

    I have (as do many, many others) the same symptons as yourself and I am learning to live with it all as the medication does not appear to help enough. I would have thought that 4 weeks on the PPI's is not long enough to be of too much help. I do not know if you will progress to Barretts or not but you will not begin to improve until you stop worrying about it so much. Worrying will not allow you to come to terms with this illness and also worrying will not stop it happening or not. I know it is difficult not to worry but believe me if you can stop you will feel much better for it.

    All the best to you.

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  • Posted

    Oesophagitis is not a progressive disease. It is inflammation occasioned by acid refluxing into the oesophagus. A course of acid suppressants for a few weeks should permit it to heal.

    The scare stories of PPIs causing kidney disease are blown out of proportion. Research has shown a correlation - not a causation. Those people who have Chronic Kidney Disease are far more likely to be taking PPIs. They probably didn't develop CKD because of their PPIs.

    Your main concern is reducing the reflux.

    Persistant reflux of acid can cause Barrett's to develop. This is a change of cell type lining the oesophagus that protects the body form haring itself. The risks of progression of Barrett's to cancer are small enough t be virtually insignificant.

    Developing Barrett's (if you are going to) isn't anything to be scared of. A cadaver study about 20 years ago in US revealed that bewteen 1 in 80 and 1 in 60 had Barrett's at time of death - from other causes. I, myself, know I;ve had Barretts for at least 22 years. It hasn't changed my life. The acidity and the reflux changed my life.

    To control reflux, surgery is an excellent option. The mortality rate from the surgery is actually extremely low so I don't know who's been propagating the scare stories. There are other options of course, like LINX but the Laparoscopic Nissen Fundolication is still the best surgical option that has been successfully performed for over 20 years (and as ope surgery for 20 years previously) . So there's a wealth of data available - none of which suggests it has a high mortality rate.

    Do not listen to the scare stories. They are causing you unnecessary anxiety which will make your condition worse.

    Take the medication and ensure you are monitored by your GP or gastroenterologist. Research evidence suggests you are 71% less likely to progress to cancer if you take PPIs.

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    • Posted

      Hi Barretts,

      Thank you again.

      You say esophagitis is not a progressive disease...but that's not what I got from all the frantic research I have been doing on medical/research sites for 2 months now.

      They say esopahgitis and HH are associated with Barretts...and that between 20-40% of gerd patients with esophagitis (erosive disease) eventually develop Barrets, and then there is a 1% risk per year for cancer. Maybe I got all of that wrong.

      Most people seem to consider this a small risk but I went to a site...and it only took a few draws (which would mean a few years) to get the 1 in 100 number.

      I just about fainted.

      My mind now feels that at this stage, I should do anything to prevent Barretts in the first place.

      Unfortunately, I don't think PPI-s are a solution for me long term because 1) they gavev me more heartburn than I'd had before.

      2) They do affect my kidneys.

      I saw nephrology while on them and for the first time ever they found protein in the urine.

      I am on my third day off PPI-s after 1 month of taking them - and I am already starting to see less heartburn than what I had when I was on them. Yes, very weird.

      Yesterday I seemed to get the rebound but today it was a bit better.

      Belching and globus sensation returned though.

      I am not sure if esoophagitis was healed because I still have symptoms. Only biopsy from endoscopy could tell - but I had one recently with an ENT when I was on my 10th day on PPI-s - and results showed esophagitis.

      My gastro may want me to repeat to check for healing.

      I just wish I knew what is the exact perentage of people with esophagitis (mild/moderate) and small HH who progress to Barretts eventually. 

      I am not sure  such specific statistics exist though.

      I need a Phstudy, manometry and Bilitech to understand  better how BAD my reflux actually is.

       

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    • Posted

      Do be careful about which sites you visit.

      HH is very common and exacerbates reflux. Reflux of acid exacerbates the development of oesophagitis (inflammation of the oesophagus - like a burn, not a disease) . Frequent recurrence of oesophagitis may promote the development of Barrett's cells. Barrett's has the ability (in a very few cases) to mutate through variouis stages to cancer.

      It is possible to trace a progression from one condition or state to another - in a few people. But it is not a disease. It is not contagious - and progression is not inevitabe. Thus it is notcoorrect o call it a progressive disease although I know there is one website in particular that always describes it as such and I have remonstrated with its author, who wrote a book about it whch I reviewed and he subsequently withdrew.

      In 2014, we asked cancer Research UK to assess the chances of developing oesophageal cancer in UK. The attached chart shows their findings: 0.7% p.a. risk of progressio from Barrett's to cancer, which is 2.5 times higher than comparative evaluations. This is based on the assumption there are 1 million people in UK with Barrett's. I originally produced this figure having applied the US cadaver studies findings that approx 1 in 70 in US had Barrett's at death. But per head of population, deaths to OAC in UK are 2.5 times higher than US. This could actually suggest there may be 2.5 million Barrett's sufferers in UK which would bring the risks of progression into line with other countries' findings.

      (The figures are quite easy to work out. 7790 people died in UK of OAC in 2014 out of UK poulation of 65 million. US has double the number of deaths but 5 times the population. )

      I can see no reason why PPIs could possibly give more heartburn since heartburn is the sensation felt from acid refluxing and PPIs reduce acid.

      What you may be experiencing is reflux of bile? Either way, and considering the other symptom you describe of globus, you will probably need to focus more on reducing the reflux.

      That protein has been found in your urine does not necessarily constitute CKD nor demonstrate any reason to suspect PPIs are to blame.

      For oeosphagitis and Barrett's to occur, there has to be present reflux and acid. So, if you don't reduce the acid, you must reduce the reflux. I took PPIs at a very high dose for 15 years before having refux reduction surgery. Now I don't need to take any medication.

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    • Posted

      I certainly want to control the reflux, not the acid - but nothing seems to work. 

      I lost any extra weight, I eat small portions, raised the head of bed, taking melatonin at night...drink water, tried HH self-manipulation and do diaphragm breathing whenever I remember. 

      People i spoke with, including a nurse, strongly discourage me from doing surgery. She even brought up how she saw someone die from gallbladder surgery (much easier) after she went into septic shock. 

      I examined all other less invasive options and they sound just as risky. 

      I wonder whether doing only the HH surgery might help. 

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  • Posted

    Hello, I can fully empathise with you. I have been on PPIs for 12 yrs amongst other tablets. Wha I wanted to tell you which I consider exrtremely important, is to elivate your bed a  minimum of 6 inches. This if anything will keep the acid down. When I am on holiday I have to sleep with 3 pillows, which to say the least is not comfortable.  Pay attention to your diet. I have virtually had to cut wine out of mine. No tight clothes either, and no bending if you can hepl it after a meal. I can only wish you the best of luck, but out of all these I think the bed is the most important. I had to buy an electric bed so my poor husband to have to rise with me!!!!

     

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    • Posted

      I've already done all this. Never drank regularly, now not at all....

      Even if they did help, I can't stay on PPiS due to my less than perfect kidney function. 

      But they seemed to make burn worse.

       I still don't know what % of Gerd sufferers with a small hiatal hernia and esophagitis (mild to moderate) later progress to Barrett's. 

      Some sources say patients usually relapse within their own category, others suggest it is progressive and that many go from esophagitis to Barretts. Some sources say Barretts is a specific response to inflammation that shows up, if it is meant to, rather early in the disease...others say that it's  found later, as a result of progression. 

      I dont know what to believe anymore and I'm desperate to hang on some reassuring numbers. 

      For many people Barretts seems not to be a big deal, but for my enormously anxious mind it would be like waiting for a death verdict every year...with a 1% chance of turning bad yearly. I already am a mess as is - getting a Barretts diagnosis would be the end of me. 

      Im ready to do surgery just to prevent getting there even though everyone tells me it's dangerous....including a nurse I know who did the best job to scare me away from surgery. 

       

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    • Posted

      Youhave received all the information.

      1, Probably about 1 in 10 with oesophagitis occasioned by acid reflux will progress to develop Barrett's.

      If you do get Barrett's, your chances of progression to Cancer are only 0.22% (US & EU y most accurate assessment) with a lifetime risk lower than 10%.

      Reflux reduction surgery, like any surgery, obviously carries risk but not highly dangerous! (I was first offerd this surgery over 20 years ago and refused as I was scared. 8 years ago I was clamouring for it. When I had it, I wished I hadn't been a wimp all those years before. My life was totally transformed.

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    • Posted

      Thank you, Barretts.

      Do you happen to know whether there is any research in the works that could identify a biomarker/predisposition for Barretts?

      I mean, where they could eventually do a test to see who among GERD patients is likely to develop Barrets and who isn't?

      I know they are working on something like this for EC itself - to see who among the Barretts patients is likely to develop EC and who isn't.

      I also read that Barretts develops relatively early during the disease process and that if one is confirmed without Barretts once, they are unlikely to get it later.

      How true is this?...

      The information out there seems confusing.

       

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    • Posted

      There is definitely much research going on into identifying biomarkers for progression of Barrett's and OAC. I get daily updates of all new research into GERD, Barrett's and OAC.

      Just within the last few weeks, these papers have been pubished:

      "Genome-wide association studies in oesophageal adenocarcinoma and Barrett's oesophagus: a large-scale meta-analysis" finding " meta-analysis identified nine new risk loci for Barrett's oesophagus and oesophageal adenocarcinoma and highlighted genes and cellular pathways likely to be implicated in disease development",

      "Common Variants Confer Susceptibility to Barrett's Esophagus: Insights from the First Genome-Wide Association Studies." finding "Eight loci have been identified by the two genome-wide association studies of Barrett's esophagus that have been conducted"

      "CYR61 and TAZ Upregulation and Focal Epithelial to Mesenchymal Transition May Be Early Predictors of Barrett's Esophagus Malignant Progression."

      "hERG1 behaves as biomarker of progression to adenocarcinoma in Barrett's esophagus and can be exploited for a novel endoscopic surveillance."

      We are getting closer to being abe to identify with genetic fingerprinting those most at risk of develoment of Barrett's and particularly of progression to Oesophageal AdenoCarcinoma.

      It is now widely thought, though not possible to prove, that all cases of OAC started as Barrett's.

      Development of Barretts from GERD is not currently considered to be due to a genetic proclivity, however. Barrett's is a protective measure taken to protect the body from frequent acid and bile exposure which could otherwise destroy the integrity of the oesophagus. It's presence can therefore be deemed beneficial if there are no genes prevalent that could produce future malignancy.

      If you wish to compare the possible continuum from reflux to cancer as a "disease", then, yes, Barrett's is an early step. The progression would be: Acid reflux, oesophagitis, Barrett's, Low Grade Dysplasia, High Grade Dysplasia, neoplasia, adencarcinoma. And the first steps along that progression are slower than the later steps - but it is not a definitve progression. For most people it stops at Barrett's. But the development of Barrett's can occur at any time if the conditions prevail. I have known children diagnosed with Barretts. And when older people are diagnosed, it's usually impossible to say how long they had it - whether it's newly acquired or been sitting protectively in the background for years. (I suspect I fall into that latter category. I didn't know I had Barrett's untl 22 years ago but suspect I probably had it for at least 20 years prior to that discovery. )

      A common scenario, described to me by an epidemilogist who curates the UK Barrett's registry, is for someone in their twenties to have been used to getting heartburn (perhaps on nights out drinking or eating too much of the wrong foods) when they see nothing sinister in the symptoms. A few years later they are not noticing the heartburn and may even think it's gone away (if they think about it at all) . What's possibly happened is Barrett's cells are now protecting them from the burning sensation. It may be 20 years later that they start noticing problems again, perhaps accompanied by swallowing difficulties that may lead to them seeking medical advice. That could be the start of adenocarcinoma. (This model also explains why the greatest prevalence for oesophageal cancer is amongst middle-aged men. ) If diagnosed with cancer, prognosis is typically 6 weeks. That's why it's important to identify those with Barrett's.

      But there is no truth that if you're not diagnosed with Barrett's, you won't develop it later.

      There is so much information out there it's important to know the source of the material. There are many websites that just propound some irresponsible quack's unproven theories which many find appealing for various reasons. In contrast, serious research findings don't produce eye-catching web pages.

      (I attempt to distil any relevant information from latest research and maintain an archive of the most relevant research links on the BarrettsWessex org uk website (under News / research) for anyone interested. )

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