New diagnosis

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Hi everyone,

I was just diagnosed with Barrett Esophagus and heital hernia two days ago during a routine endoscopy. Never had any Gerd symptoms and am only 31 years old. I have been in a panic since diagnosis and cry all day. I feel like it is a death sentence and am scared silly. Had anyone else been diagnosed in their 30s? How is everyone coping or what kind of actions are you taking to keep it from progressing? I have two small children and can’t imagine ever leaving themsad any advice would be appreciated, thanks. 

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  • Posted

    Hi Vera,

    If this is how you are feeling after your diagnoses I recommend you see another doctor. Your doctor should be explaining to you how to live with and manage your condition. It is only a very small percentage that Barrett’s changes to something serious. Go to a Gastroenterologist in a major city with treatment options. I hope you feel better emotionally as your kids need you. Get reliable facts and information then make an informed decision with your doctor how to manage your Barrett’s and live your life!

    All the best!!

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    • Posted

      Thanks Dori- I have an appointment for a 2nd opinion scheduled there end of the month. My doctor is good but he pretty much told me my risk for cancer is 20x as high and that this is really serious. It wasn’t until I started crying that he was calmer. He didn’t even tell me how  big it is or anything. 
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  • Posted

    Hi vera

    Like you I was diagnosed with a hiatal hernia and barretts about 3 years ago.  I had never had a days Gerd symptoms till after my endoscopy when i suspect something went wrong.  Lots of gerd symptoms since then.  I am taking PPIs (Nexium) everyday which keeps the symptoms at bay.  They work really well.  So don't worry as this will only make it worse.  Get a good GI doctor and get started on the meds as soon as possible.  There is light at the end of the tunnel. My younger brother has also had this since about 30 years of age.  He is now in his 50's so all is not lost.  Don't stress.  As this is  the worst thing you can do. Hope this helps.  Mike

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  • Posted

    Hi vera

    Like you I was diagnosed with a hiatal hernia and barretts about 3 years ago.  I had never had a days Gerd symptoms till after my endoscopy when i suspect something went wrong.  Lots of gerd symptoms since then.  I am taking PPIs (Nexium) everyday which keeps the symptoms at bay.  They work really well.  So don't worry as this will only make it worse.  Get a good GI doctor and get started on the meds as soon as possible.  There is light at the end of the tunnel. My younger brother has also had this since about 30 years of age.  He is now in his 50's so all is not lost.  Don't stress.  As this is  the worst thing you can do. Hope this helps.  Mike

     

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    • Posted

      Thanks Mike, I am trying not to stress. I am prone to anxiety and this has just exasperated it.  I’m going to see my pcp and request something for anxiety I think. I hope this feeling of dread passes quickly 
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    • Posted

      Look into Cannabis CBD tincture or oil... legal and is a great anti-anxiety supplement... some think it has anti-cancer effects ( I do).  Also, B17 is worth a look... also called  Amygdalin  or Novodalin®  Google it, they will not allow links here, sorry.

      Did your Doc say you had dysplasia?  If not, relax... if you do, still relax.  I personally do not like PPI's... prefer Pepcid and Gaviscon tablets...  take care and BREATH!

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  • Posted

    I'm 37 male, I was diagnosed with barrets esophagus with non displesia last year. The diagnosis was barrets in the place where stomach meets the esophagus...just now I met a nurse who is 20 years working in gastro..she says only less % of folks move from non dysplasia to dysplasia. The main thing is to keep your acid reflux at bay and basically you need to modify the diet and no food 3 before 3 hours going to bed.Even that is progressed, still there is a treatment to get rid by using radiography abalation...but again keeping acid reflux under control is the key thing. Don't lose hope and try to keep acid under control by medications and PPI. What symptoms are you having currently?

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    • Posted

      I actually don’t have very many symptoms.  It was just recently in the past two months  that I would be nauseated in the mornings and burp after eating anything! I thought maybe I was developing reflux but bender thought it was this bad. 
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  • Posted

    Hiya, I'm 37 and also have 2 small children. This soo sounds like I've written this, my anxiety and worry is all over the place. I get food stuck all the time but don't wanna go to docs for another endoscopy in a series it's bad news but I'm gonna try and lose weight and take pills and see what happens. x hugs to you

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    • Posted

      I would go see a GI dr. I know it’s scary but your kids need you and it’s better to know and be monitored than something horrible happening down the road. Prayers 
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  • Posted

    I’m 38. I was diagnosed with ultrashort segment BE last year. (“Irregular z-line” with “scattered focal metaplasia.”) I had been diagnosed with an irregular Z-line when I was 36 and I suspect it was metaplasia then, too, but the center that did that previous one doesn’t do biopsies on anything less than 1cm.

    So yes, I know it’s scary to think about, scary to know you have. And yes, your risk is a lot higher for cancer of that region. (Not just esophageal adenocarcinoma, but also stomach cancer of the area.) But here’s wher you have hope: most are modifiable risk factors, to an extent. You have Many potential options. 

    1. Consider surgery. Some say that it doesn’t change the Barrett’s, but some so. In fact, Dr DeMeester at USC is in the 7th year of a 15 year study looking at whether anti-reflux surgery reduces Barrett’s length. 

    2. Take your meds as prescribed. 

    3. Change your diet to a GERD-friendly diet. BE STRICT ABOUT THIS. The cookbook “Eat to Live” by Joel Furhman has been a godsend to me. Just modify the recipes to not include all that onion and garlic ;-)

    4. Lose weight if you can. BMI of 24 has show to greatly reduce reflux. (Or so I hear. I’m

    Currently at 27.)

    5. Speak with a naturopath as well. Things like DGL and mastic gum have been shown to help in cases. Certainly, they don’t do harm.  

    Now, what you want to do is get the length of the Barrett’s. Your risk of moving on to cancer is about .1% per year per centemeter of length. That will determine how often you’ll need to be scoped and what treatment options are available to you. 

    Remember, too, that Esophageal cancer progresses very slowly. Being scoped every 3 years will allow them to see changes when they happen and to treat you if they do. There are stages it must move to before it gets to that stage, and there’s are proven, successful treatments. (Frankly, I wonder why they don’t donablation on non-dysplastic folks.) 

    Finally, remember that the vast majority of people with Barrett’s will not die of EC, and that it’s usually about 20 years from diagnosis to progression to cancer, if it develops at all. 95% of all EC’s are found in people who didn’t know they had Barrett’s, so if anything were the lucky ones. (Weird luck, I know.) 

    I won’t lie, I get scared, too. Very. And depressed. And angry. And then I get in pain, even despite the pills, even despite he good diet, and a whole torrent of emotions floods me. But don’t let that take you over. 

    Do what you can about it, then focus on the here and now. 

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    • Posted

      Thank you Norb. The profession to cancer if it develops puts me at 51, which is horrible because it’s just too young. He didn’t give me a length in cm. Just told me it’s not that bad 
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  • Posted

    That’s great! Keep being proactive and you will get your fears under control.  Find the right doctor that you are comfortable with. Unless the doctor has found something definitive at this point he/she is unnecessarily giving you a statistic that has no foundation. I wish you all the best and hope you can find some peace.
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  • Posted

    Hi! I have been in the same boat as you..... am now 40..... was diagnised with focal metaplacia at the gastroesophageal junction n gastritis n hernia about 6 yrs ago...... i have been to 4 diffrent gastroentrologists...... have been on ppis since.....and yes it is scary but putting it into perspective....... its not all that bad.... and yes believe it or not we are the lucky ones.....i also have 3 small children.... please please please don’t stress about it....... just take ur medication regularly and be sensible about your diet.... initially i was tooo strict with my diet..... but then realised that we all have different triggers.... onions n garlic if cooked dont give me those bloaty etc symptoms infact most foods i eat am fine with... key for me is smaller amounts regularly.... no fizzy drinks......plus i stop eating 3 hours before bedtime and have my bed elavated ...... other than that i can honestly tell u the internet can mess ur head up and even the way a doctor handles the case can either make u or break you.....please don’t stress..... enjoy ur life........ nothing bed will happen 😇

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    • Posted

      Thank you, I am trying.  I have a second opinion scheduled at the Cleveland clinic end of April. It’s all I can seem to think about right now and it feels like I am just waiting for it to turn into cancer for the rest of my life and there isn’t much I can do to change that fact. Thanks for your advice I appreciate it and I hope you also stay healthy and happy! 
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    • Posted

      I think the latest directions from gastro community is to access the patient and especially do radio frequency ablation when they are age less than 60 even Barrets esophagus without dysplasia, but again acid control needed after it.
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    • Posted

      I’ve never heard this recommendation, though I’d like to think it makes sense. Do you have a link to a published guideline? It’s something I’d take to my doctor immediately! 
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    • Posted

      Please check YouTube "barrets esophagus have we find a cure by v. Raman muthusamy" Very informative about barrets and the latest treatment... everyone having barrets should see it. This is from 2013, but they might still have advanced from that.

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