Recently diagnosed and feeling alone

Posted , 14 users are following.

Hi, 

I'm a 23 year old female that was recently diagnosed with Barrett's oesophagus. 

I'm so confused as to how I could have this when the usual age frame is 50+? 

The more I read up on it, the more terrified I feel. 

Are there any other young people suffering from this? I feel so alone.

I don't want to take the medication that is prescribed as it'll make me dependent on it but then there's the risk of cancer. 

Has anyone had any luck reversing their Barrett's? 

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  • Posted

    I am not young now but I was when first diagnosed with acid reflux.  Been there done that.  The advice to my younger self would be to get my anxiety under control and go get therapy.  My younger self would have laughed at my older self then punched him in the face though..... haha what anxiety old man? Seriously though, chances are if you have gerd you also have anxiety.  Looking back being unable to swallow because of damage from acid reflux was actually my first symptom of anxiety.  The PPI meds worked for years until I had my first panic attack 10 years later.  Reduce stress, eat healthily, work out and you may be able to get off the meds but for now, I would listen to your doctor.
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  • Posted

    I am no longer young, but I was when I was diagnosed with Barrett's. I was also confused about it because I was so young and I was a non-smoker and non-drinker. I'd had Barrett's for many years before I was able to have a Nissan's Fundoplication. During the prep for that it was discovered that I had a large hiatal hernia, and that I'd most likely had it since birth. The hernia was one of the main reasons that I'd always had the reflux that caused the Barrett's. Talk to your doctor and find out if you might also have a hernia that can be repaired. Also, find out if you are a candidate for a Nissan's fundoplication. I seldom needed the PPIs after that surgery. I don't know that you can reverse Barrett's, but you can keep it from getting worse.

    Definitely have the endoscopies that your doctor recommends. There's no reason to live your life in fear. Barrett's seldom turns into cancer but it sometimes does. If you are getting regular scopes any cancer that develops down the road will be found early and that's extremely important.

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  • Posted

    Thank you so much taking the time to reply to my thread Marvin and Becky. Your messages and advice are so greatly appreciated. I exercise daily and eat healthy. I have never smoked and drink probably 3 times a year at most. I have always strived to be physically fit.  But like you Marvin, I do suffer from anxiety and have since I was a child. You are so right about the inability to swallow and anxiety. Your message made me realise how badly I have  neglected looking after my mental health. Thanks for that! 

    Becky thank you for the information regarding the Nissan's Fundoplication and hiatal hernia. I will be discussing these with my doctor during my next appointment. 

    What have you guys done to prevent your Barrett's esophagus from getting worse? Is there anything you guys would recommend, medication or food wise that stopped it's growth? 

    Thanks again guys. 

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    • Posted

      In my early years although I had it I never had much pain.  It was only the fact that I was strictly on a liquid diet and lost a lot of weight because I could not swallow any food that caused me to take the PPI's.  The PPI's worked for me but I admit that I have new symptoms at the moment and need to get another scope done. I thought it was under control and would stop the PPI's but later I started to feel the pain that goes with it.  Sometimes nothing helps that pain much.  After that, I just stuck to the meds and I was lucky because I only had to watch my food a little,  some people had much worse than I did.  After I had my gallbladder removed from a blockage I took a break and went 4 years without meds or watching what I ate.  Sadly it has returned again so now I need to get it checked out again.  I have no idea at this point how bad I am messed up.

      I knew a guy that I worked with that got it around the age of 16.  He had real bad that drinking water felt like razor blades.  He was put on Paxil for anxiety and after that, he got better.  The only med he was on treated anxiety and he watched his diet.

      I would say if any lesson learned from me would be to get the scope done even when feeling good so that you know if any more life changes need to be done in order to keep it under control.  I always ignored it unless I had symptoms.

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    • Posted

      I think there are some treatments available now that you might want to look into. My Barrett’s actually did turn cancerous, but because I always got the endoscopes done the cancer was discovered miraculously early. This happened last month, not when I was anywhere close to young. 

      Don’t worry yourself sick. Just research and stay on top of what treatments are available. You’re so young that there is no telling what things will become available during your lifetime.

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  • Posted

    Hi there. I’m waiting for the results of my biopsies at the moment to see if I have Barrett’s too. I’m so upset. I’ve had anxiety for 4 years (now 44) and worried it’s caused this. I’ve been confirmed as having a hernia but waiting on the rest of the diagnosis. I’ve no idea what the next steps are. Like you, I’m looking for someone to say there’s a way to get rid of Barrett’s. 
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    • Posted

      I believe that there are some treatments for Barrett’s now, and one or two of them might get rid of most of it. You should research it and see if the benefits outweigh the risks. I would be surprised if anxiety caused Barrett’s. There has to be prolonged exposure to acid for the esophageal cells to change to Barrett’s. Still, finding ways to reduce and/or control your stress will help your overall health.

      Good luck. If ir turns out that you do have Barrett’s just follow your doctor’s orders and don’t worry.

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  • Posted

    Hi! I don’t think there’s any one age in life that is more likely to be diagnosed. I was diagnosed 7 years ago and, like you, was terrified. Don’t read too much on Internet or scare yourself from any forum post. And I have heard that Barrett’s can improve. And that only a tiny percentage evolves into the scary C! Plus you will now be monitored regularly unlike people walking around that don’t know they have it! And you can take steps to improve diet and reduce stress. Of course, I’m one to talk. Just had endo with nodules and freaked out for several days with worry! But all tests came back normal except for tummy inflammation.

    Has mine reversed? Not sure. Six years ago during second endo new doc didn’t see any Barrett’s-only some redness.  Now this month six years later though nodules found, all esophagus biopsies came back normal and I’ll have rescope in three years. But I’m going to visit with doc in a month to ask if I still have Barrett’s and if so, how much? 

    It can be difficult not to worry, but try not to. Limit Internet research!

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  • Posted

    Try to relax and stay off the internet!  Some of the stuff on here is scary and not always accurate.  

    I had silent reflux so I wasn't aware that I had a problem.  I was diagnosed with Barrett's with high grade dysplasia last April.  Since then they've removed the dysplasia by doing a mucosal resection, then they did a Nissen fundoplication and repaired a 9 cm hernia.  Yesterday I had a cryoablation done to remove the remaining Barrett's.  In three months I'll have another endoscopy and, if there is still Barrett's, another ablation.  

    I was scared silly when I was first diagnosed but my doctors are aggressively treating it and after it is gone will continue to monitor me.  Make sure you have a doctor who is experienced in treating Barrett's and if you want confirmation of his treatment plan, get a second opinion.

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  • Posted

    Hi Mnr

    So sorry to hear about your diagnosis and how you're feeling.

    I was just diagnosed this week as well and I'm feeling pretty much the same.

    Crap.

    Lol.

    All I can say to you, is take comfort in the fact that you've discovered this at an early age. You've caught it at the right time and can now change certain things in your life to make sure that you're on the right track to getting better.

    My opinion, I would take the meds, see how they go for 6 months and then check in with your doc and see what progress you've made.

    I've just read all the replies in this thread and it's a comfort to know there are people out there going through the same thing, as unfortunate as it is.

    Be strong. Much love. Heal well.

    xxx

     

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  • Posted

    Do not feel alone . I was diagnosed when under 30 . I did always have trouble with acid/heartburn and was totally fobbed off by doctors as because of our age it doesn’t really trigger any red flags . 

    Keep on the medication , try eat as healthy as you can and avoid anything that aggravates your symptoms. 

    I was extremely worried , had my next scope after 18mths and no changes so now being monitored every 3 years . Anxiety can also be a trigger sonalthough it’s not easy try not to worry to much 

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  • Posted

    I am 24 and also diagnosed with haital hernia and barrett's. You aren't the only one. I am currently on PPi and controlling my diet. Currently I only eat brown rice and some fruits. I also have marshmallow root tea sometimes. I heard somewhere that it helps recovering the damaged esophagus. I used to have panic attacks before because of shortness of breath but somehow I managed to control my anxiety. I still have trouble in breathing but I am getting used to of it. I am also planning to go for surgery but my doctor said I should try medications before going for surgery. Good luck and keep us updated with your case smile And remember that you're not the only one!

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  • Posted

    I am 31 year old female diagnosed with Barrett’s 3 weeks ago. Never any symptoms of reflux other than pregnancy. Since gallbladder removal in December started to notice pain and burning in my chest and back. And also bile vomiting and reflux. That was why I had the endoscopy. Still working through the feelings that I have around this diagnosis but just know that you are not alone. 
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  • Posted

    I'm much older than you but I was diagnosed last year with Barrett's with high grade dysplasia.  I have silent reflux so I had no idea there was a problem.  I've had a mucosal resection to remove the dysplasia, a Nissen fundoplication and hernia surgery and a cryoablation.  I was scheduled for a second ablation last Wednesday but it  wasn't necessary.  When the doctor did an endoscopy, he said the Barrett's was gone.  

    My advice is to find a doctor at a teaching hospital who specializes in the treatment of Barrett's and do exactly what he says.  My doctor saved my life and I'm very grateful.

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    • Posted

      Elaine,

      Thank god you are ok!!! What amazing doctors you have- and it is great that you don’t need to go through another ablation. Quick question- do you still have your gallbladder? 

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