What's my outlook?

Posted , 3 users are following.

Hi guys, I have a long story that has gotten quite scarey lately and I'm really looking for some direction and advice if possible. 

As far back as I was about 10 year old, I was suffering reflux in my mouth. We complained about it to the doctor and of course he did nothing, there was no answer. Over the years this reflux became just a normal part of life for me, I didn't think much of it usually... the odd time I would have hell trying to sleep. Dentists have also exclaimed horror at how much my teeth have been eroded, one of them accusing me of suffering from bulimia, and that was many years ago now. This leaves me really scared about the condition of my oesophagus.   

About the time I was 21 I started developing strange problems with my throat, as if it was too short or something, and I developed massive shortness of breath. This was alarming to me and I went to the doctors many times, and got diagnosed with hiatus hernia, GERD, COPD and asthma (I already had a history of asthma and this was contributing to the shortness of breath). After months of medication and lifestyle adjustment, I found that lifestyle adjustment was the most effective answer for me. Though I was never really overweight, I think that by dropping a lot of weight at this time it meant there was less pressure pushing my stomach upwards. Whatever the case, it worked for me, and everything was fine again until about mid-way through 2016 which is 10 years after the onset.  

As part of my new interest in my health, I of course read the warnings about acid reflux and I made strong efforts to try to stop the acid reflux. But it just felt so normal sometimes, like a cow chewing the cud almost. It would just come up a second time. Burps and farts were also no problem, since I'm alone a very large amount of the time, and could hold it for others (often with some difficulty). I would get bad heartburn now and again, but even though I never kept a log the reflux was probably almost every day. Earlier 2016 I got heartburn and other problems so bad it really spooked me and I tried to fix it again, but failed. There were 2 nights when the heartburn was so bad I couldn't lie down at all, because of the pain and the damage I knew it would do. I am fairly certain now that must have come from eating self-cooked red beans earlier in the day. So I certainly cut that out.   

But generally for eating healthy, the deal I thought was to cut out processed modern foods and could eat as much fruit and vegetables as we wanted right? Eating healthy is hard enough, this compounding of the difficulty of it is harder. If I cut out cucumbers, tomatoes, bananas, which I think all cause it a bit, that's half my main foods gone! Garlic causes it, dried fruits cause it. I also developed a taste for this special hot chilli sauce, and I started putting peas with it etc., and I didn't care about the reflux again for another while. I was busy in life, and tired of trying to solve it.  

I see people on boards like this say almost casually: "eat healthy, avoid coffee, chilli, large meals".... but all of those things are considered healthy according to modern dietary advice. They're only unhealthy for people who they flare reflux or other GERD in. And it's SO HARD to do all of these things. And it doesn't feel like I'm doing anything, it feels like I'm just missing out. Even things like eating a very large amount of vegetables at one sitting, I really like/d that. What a curse this thing is. There's no positive feedback, at least with a weight problem you have the weighing scales, with diabetes you have the blood sugar. I could go cold turkey on something like bread and that's how I gave such things up, I can't go "cold turkey" on food. Apart from not eating late, it's so easy to just forget about it and pretend that I'm "normal" and can eat what I want. Of course I have the bed elevated, which helps a lot.  

Earlier 2016 also when it got bad, and since a few days ago, I've had this weird feeling in my stomach area, the best I can describe it is this "wobbly" feeling, as if things aren't connecting rigidly, as well as small, dull pains around my stomach area, not the usual ones. A general feeling of something really not being quite right there. I ate only a little today and logging for the first time, I actually didn't reflux (since I ate so well), but I belched many times after everything I ate.   

So I'm wondering what my future outlook is, what sort of risks am I looking at and what should I do to improve my situation? I'm thinking of getting a camera endoscopy as it might help clarify my situation.   

   

 

1 like, 3 replies

3 Replies

  • Posted

    Hi.

    Definitely go for endoscopy to investigate.

    I suffered from reflux all my life - remembering incidents when I was just 4 years old before I started school. (I'm now 69. )

    Everyone initially assumes it's the food, and whereas to a small extent that may cause some problems, unless you have discovered anything that's a particular trigger for you, it's not what you eat but how you eat that needs to be addressed.

    Lifestyle is more important than diet. Only eat small amounts at a tiem - little and often. Keep you trunk upright whilst eating and chew and swallow carefully, taking your time. Let your stomach empty before doing anything that squeezes, tilts or shakes it. Gentle upright exercise like walking will help with that.

    Your reflux is probably due to a hiatus hernia preventing the correct operation of the lower oesophageal sphincter. Reflux of acid causes erosion which is often felt as heartburn. (And I remember those nights sitting up all night feeling I had a blowtorch down my throat. )

    I didn't realise how dangerous this can be and only relied on the simple chalky antacids which I was constantly taking - and it wasn't until I passed a kidney stone that I saw a doctor (23 years ago - after suffering for more than 40 years) .

    Persistent acid erosion of the oesophagus causes cellular changes to protect the body from digesting itself by replacing some of the normal cells lining the oesophgaus with acid-resistant columnar ones, which is known as Barrett's Oesophagus.

    However, in a very small number of people, those cells can mutate over time (through stages known as dysplasia) to cancer. So it is very important to know and if you have developed Barrett's, you'll need to have regular surveillance scopes every few years to make sure it's behaving itself.

    You should be taking acid suppressant medication known as Proton Pump Inhibitors. They reduce the amount of acid you produce, mking the reflux less dangerous. They also help protect against progression.

    I have experienced all the symptoms you have described - and more. I have lived knowing I have Barrett's for at least 23 years. The PPIs were a saviour. However I then started developing more symptoms of reflux that weren't acid related (the chronic cough being the main one) and had a fundopplication (reflux reduction surgery) which was the best thing I ever did.

    I have spent the past 15 years researching the condition with the help of a number of gastroenterologist colleagues and written a book which is free, thanks to a local authority grant, which is also a website accessibe here www DownWithAcid org uk which, hopefully, will provide everything you need to know about acid, reflux, complications and management.

    You will also find much help from the charity I founded some years ago, www BarrettsWessex org uk.

    • Posted

      Thank you very much for this helpful and comforting reply. I'm the exact same in not fully appreciating the damage it was doing. I think when people become accustomed to it it's tempting to just dismiss it after a while. Unfortunately I am very wary of modern medicine due to bad experiences before, I don't trust it. I also have a very strong reflex when someone touches anywhere around my throat area. I could not hold myself still to allow my doctor to example my throat before, even though I tried my best to keep still I jumped back every time as a kneejerk reaction. I'm not sure if that would apply for standard endoscopy, so I really like the camera route.

        

      Over the past three days I've eaten as well as I can and slowly. I had only one reflux episode when I ate lots of grapes. I see a lot of sense in what you're saying about eating slowly. I've still had plenty of this strange dull pain like pins and a feeling that I can't or shouldn't shift around too much.  

      I was wondering if maybe I could try to work out what to do now and hold off on either procedure until the tissues are less inflamed healed a bit. Or maybe I should go right away for an endoscopy?

        

    • Posted

      I recommend you having the endoscopy as soon as possible. If any damage has been done, you need to know how bad it is and what actions to take. Endoscopy is usually carried out under sedation so you will be relaxed (some even go to sleep) and you may not even remember it afterwards.

      Although you may have reservations about medication, it is important you take acid suppressants to permit healing of any inflammation. They also reduce the r(very small) risk of progression towards cancer.

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