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Newly Diagnosed - Young Age, Scared

Printed From: Barrett's Support Forum
Category: Barrett's Support Forum
Forum Name: Support Forum
Forum Discription: News and Events
URL: http://www.barrettscampaign.org.uk/forum//forum_posts.asp?TID=2016
Printed Date: 22†Oct†2019 at 8:17am


Topic: Newly Diagnosed - Young Age, Scared
Posted By: KEA827
Subject: Newly Diagnosed - Young Age, Scared
Date Posted: 06†Feb†2019 at 2:14pm
Hello,

Not sure how many members are still active here, but it's one of the few support groups I was able to find online, so hoping there is someone!

I've been recently diagnosed with Barrett's at a fairly young age. I'm 29 and otherwise in perfect health. My father has had it for a few years, but was diagnosed earlier in life and my aunt had esophageal cancer that she detected late in life - so it's clear there is some history there.

I think what I'm hoping most for, is to just connect with others and hear success stories that this is something totally livable with and not putting a cap on my life years. I've googled and of course, everything comes up mentioning Cancer - which is terrifying. Additionally, I've read some things from others my own age about how they're coming to terms with potentially leaving their children and spouses behind, which is even more painful to read.

My doctor mentioned my size is very small and there is no dysplasia - which sounds positive. I was prescribed a dosage of PPI's and have been researching diet lifestyles.

More or less, I'm just hoping to hear that I have many, many years ahead of me and I can go on to live life as long and normally as any other person without Barrett's. It is devastating to think that my life could be cut short over something like acid reflux. I also worry that being diagnosed so young, and have more years to live with the disease, will shorten my life, too.

Have many people lived long years with maintaining this?



Replies:
Posted By: chrisrob
Date Posted: 06†Feb†2019 at 6:23pm
Hi Kea and welcome to the forum,

Yes, you are young to have Barrett's but not unique. It is most often found in white males over 50 but that doesn't preclude the possibility of younger with different gender and ethnicity.

Unfortunately, Dr Google has much to answer for: there are too many scare mongers etc posting on the web and it's not always easy to sort out the truth from perpetuated myth.

Barrett's is a protection developed in the lower oesophagus as a protection against acid splashing up (reflux). Although the stomach has columnar, acid resistant cells, the oesophagus hasn't. For the vast majority of us, it will just do its job but in a very small number of cases it can mutate to cancer which is why we are put on a surveillance programme to be rescoped every few years; if pre-cancerous changes are ever seen ("dysplasia"), it can be ablated to prevent the cancer occurring.
(See https://sites.google.com/site/barrettswessex/tips/barry - this story for a positive way of looking at things.)
I can say with 99.9% certainty you will not die of oesophageal cancer - you have more chance of being knocked down by a bus.

PPIs reduce the acid. The acid itself isn't a problem if it stays within the stomach but splashing up the oesophagus has caused oesophagitis and Barrett's. Reducing the acid will not reduce the reflux, which you will need to manage as necessary. (see https://sites.google.com/site/downwithacid2/home/acid/acid-remedies - this chapter from the Down With Acid encyclopaedia.)

The PPIs you have been prescribed also have a chemo-protective effect, possibly reducing the risk of developing cancer by 71%. (See the evidence https://sites.google.com/site/downwithacid2/home/addenda/ppi-evidence#TOC-Do-acid-suppressants-prevent-cancer- - here .)

As regards diet. This is not so important as regards acid reflux. Foods do not produce more acid nor do they promote reflux. Acid production is controlled and regulated by 3 hormones: Acetylcholine, Histamine and Somatostatin, as shown in this diagram which will be in the revised edition of the Down With Acid encyclopaedia:


Food can make us uncomfortable: if we overfill our stomachs it can result in reflux. If we have oesophagitis, certain foods passing over that area will make it hurt. (eg pour lemon juice on a wound and it hurts but it didn't cause the damage).
The main message is to only avoid anything that causes you a problem; it's not what we eat but how we eat that's important to refluxers.

Read the https://sites.google.com/site/downwithacid2/home/food - section on food in the Down with Acid encyclopaedia.

I know I have had Barrett's at least 25 years and probably much longer. I'm sure I'll still have it when I die of something completely unrelated.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: KEA827
Date Posted: 06†Feb†2019 at 7:29pm
Hi Chrisrob,

Thank you so much for taking the time to respond and supplying me with all of that information. It's a relief to experience someone that is well versed in the disorder, and also a relief to hear that you've lived some time through it.

Do you find that eventually it goes to the back of your mind and you stop worrying less about the outcome in years to come? My anxiety seems to be the hardest thing to overcome. There have been many tears shed since the news.

Is it safe to look at this illness more as an inconvenience to monitor vs. an illness that leads to death? Just want to feel as though I have many years to live and many experiences left!


Posted By: chrisrob
Date Posted: 06†Feb†2019 at 10:57pm
Anxiety can be worse than the Barrett's.
( https://sites.google.com/site/downwithacid2/home/addenda/patient-concerns - This addenda to Down With Acid, which is being incorporated in the revision currently being undertaken, highlights a few others' comments (I get these daily) plus some research links.)

Barrett's is a condition you should be able to forget about, though you may need to change a few habits re lifestyle and medication first.

I don't really think of my own Barrett's - until it's that time for my next scope. I'm not worried it'll have changed, I'm sure it won't have, it's just, like all of us, I don't enjoy the experience.

And my Barrett's hasn't killed my will to live and colect experiences. It hasn't stopped me travelling or doing things like cycling across the Andes.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: KEA827
Date Posted: 07†Feb†2019 at 2:30am
The anxiety is most definitely the worst part. Iím going to try to avoid getting too lost in my own thoughts and falling into a google trap. Iíve read through the few forums I could find and for the most part, it looks like we all have the same fear in common, but for the most part things seem stable. So Iíll keep focusing on hoping for the best, try my hardest to put it to the back on my mind as you have, and keep looking towards a long, healthy future. I guess finding out young and monitoring this (despite the anxiety and depression that comes with it) is ultimately better than being blissfully ignorant for years, but finding out when it had progressed to cancer. Trying to look on the bright side.

As mentioned, my doctor put me on PPIís (protonazle at 20mg) and suggested I watch what I eat. Knowing how much research youíve pursued, would you recommend I go to a second doctor for a second opinion? Or is this typically the treatment given for smaller, non-dysplasia types? Iíve noticed things like surgeries that tie your stomach or ablations that help minimize the Barrettís. Is that worth looking into or will my PPIs be sufficient for now?


Posted By: chrisrob
Date Posted: 07†Feb†2019 at 10:49am
I don't think you'd learn anything new from a second opinion.
The treatment is typical. The smallest dose of PPI that works and surveillance every few years. Actually 20mg pantoprazole is a very low dose so if you do start experiencing increasing burning sensation, it could be increased if necessary.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: KEA827
Date Posted: 07†Feb†2019 at 2:39pm
Thanks Chris. I'm not sure if you're versed in what symptoms are normal or not, but I've noticed even with watching my diet and the few days into the PPI, I don't get any severe symptoms, but do get a lot of burping/hiccups that taste like food after I eat. Is this a concern or potentially the meds not working?


Posted By: chrisrob
Date Posted: 07†Feb†2019 at 4:58pm
What you are experiencing is non-acidic reflux.
The PPIs have reduced the acid but not the reflux - they just make it less erosive.
You don't need to worry about diet. How we eat is more important than what we eat as far as acid/reflux goes.
https://sites.google.com/site/downwithacid2/home/appendices#TOC-Symptom-checker - This page provides a summary of what symptoms acid/refluxers may experience.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: KEA827
Date Posted: 09†Feb†2019 at 1:30am
Just so I'm understanding correctly, the PPI's generally help the acid formation only - so in that case it's generally normal (and harmless?) to experience the burping and other symptoms on the list? I've been feeling a lump in my throat and soreness as well (of course this could be the anxiety or just a cold forming, but just in case it is acid reflux related.)


Posted By: chrisrob
Date Posted: 09†Feb†2019 at 9:12am
PPIs stop the stomach making so much acid so that what refluxes is less damaging.

Burping is actually quite a natural thing, known as "Transient Lower Oesophageal Relaxation", but you may experience it more for various reasons. The most common reason for excess gas in the stomach is aerophagia where we swallow air as we eat. (It's difficult not to.) Then chemical reaction between some foods and acid will release gas. Fermentation of foods and bacteria will also produce gas.

The problem is the control of TLOSRs with a malfunctioning sphincter. One tip I, and some others, have discovered is sipping sparkling water can help promote a burp at a time when you can be upright and release it properly.

The lump in the throat feeling is called globus and is reported by 50% of refluxers. It's the cricopharyngeus, that forms the upper oesophageal sphincter, spasming in an attempt to prevent extra-oesophageal reflux.
See this chapter on https://sites.google.com/site/downwithacid2/home/reflux/lpr - Extra Oesophageal Reflux in Down With Acid.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: KEA827
Date Posted: 10†Feb†2019 at 1:18pm
I started feeling a bit better about the diagnosis and happened to find some information about how bad PPIís are for you long term and the laundry list of things they bring about. So now Iím scared all over again, if I happen to beat the esophageal cancer risk, I feel like thereís now 5 more things that could kill me - like kidney disease or heart failure or a risk of stomach cancer - from the PPIís. My outlook looks so completely grim right now. I feel like I have to come to terms with something killing me young.


Posted By: chrisrob
Date Posted: 10†Feb†2019 at 1:41pm
Don't be afraid of those who try to sensationalise stories concerning possible correlation between PPIs and health concerns.

PPIs are really very safe drugs. They have been in use for 30 years by millions worldwide and probably saved millions of lives.

I have looked carefully at all the research. https://docs.google.com/viewer?a=v&pid=sites&srcid=ZGVmYXVsdGRvbWFpbnxyb2JpY2hyaXN8Z3g6NzI3ODA3NTg3YzY2YThmOQ - This link will take you to the revised pages for the next edition of Down With Acid coming out soon, explaining the truth about these sensationalist stories.

You can also see the research links https://sites.google.com/site/downwithacid2/home/addenda/ppi-evidence - here .

Basically, if a paper finds some patients with condition x are taking PPIs, there is no causal link. However, sensationalist journalists may jump to incorrect conclusions that PPIs must have caused condition x !

I particularly like this "research paper" that illustrates this: https://www.bmj.com/content/363/bmj.k5094 - Parachute use to prevent death and major trauma when jumping from aircraft: randomized controlled trial that concluded: "Parachute use did not reduce death or major traumatic injury when jumping from aircraft in the first randomized evaluation of this intervention." But you'll need to look at the research to find out why - the picture at the bottom of that article's page will save a lot of reading.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: KEA827
Date Posted: 11†Feb†2019 at 4:58pm
Hey Chris, I had an interesting email communication with my GI doctor's office. I had emailed them to ask the size of my segment, as I've noticed many mention this and I didn't see any of this in my report.

One of the nurses replied to my question and said "I believe it's only measured when it's positive for dysplasia or metaplasia."

That doesn't sound right, does it? I should have some recorded size, correct?


Posted By: chrisrob
Date Posted: 11†Feb†2019 at 5:07pm
If your Barrett's is a very small segment, they may not measure it.
Barrett's actually is called metaplasia: it means change of cell type.
Measurement is actually quite difficult. The endoscopist has to guess the extent of the lesion (before it has been officially identified by a histopathologist).
Measurements are made bu looking at markings on the outside of the endoscope tube where it passes through the mouthguard (at the incisors). The tube is usually marked only in 5cm intervals so the endoscopist has to make an estimation. The other factor is, the oesophagus is elastic whereas the scope is rigid and, gripping the sides of the oesophagus to some extend, can stretch it.


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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: KEA827
Date Posted: 11†Feb†2019 at 5:52pm
Thanks for this feedback Chris. That's interesting. I did think it was strange she said that they only measure if it's dysplasia or metaplasia - since I too read that Barrett's is metaplasia. So in that sense, they should have measured. I wish there were some documentation of size for me. The doctor did mention it was very small, but how small do you think that could be? Under 2cm?



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