Fairly new GORD sufferer questions

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therefluxbadger
New Member


Date Joined Sep 2011
Total Posts : 10
   Posted Today 9:16 AM (GMT -6)   
Hi there,

I've just joined this forum (it looks like a great resource for information!) and this is my first post, so please forgive me if is a bit lengthy and I provide a bit of background to myself! I've been suffering with what I'm now fairly sure is GORD (I'm in the UK!) for around 18 months (I'm 31 and male). It began with occasional short lived heartburn and slightly odd sharp pains in my chest and stomach area (and sometimes in my back) that come and go and seemed to be worse before eating, and are generally relieved by food. Ive been on Lansoprazole 30 mg, twice daily for around two months now and this seems to have dealt with most of the pains. I must stress, my pains have never been excruciating, more of a discomfort and sometimes more of an indigestion type feeling, but I haven't yet suffered any real disabling pain like some poor people seem to experience with GORD.

But one of the most irritating features of my condition recently has been the feeling of almost constant phlegm at the back of my throat, often worse on waking, and sometimes I wake with a sore throat. I generally feel like I have fluid in my throat and whilst most of the discomfort I was experiencing in my chest and back appears to have gone (although I still occasionally get short pangs and twinges) this does not seem to have got any better. I was wondering if the Lansoprazole might be effectively reducing the acid my stomach is producing, but that the feeling of fluid in the back of my throat is perhaps refluxed fluid which has a reduced acid content and is therefore relatively harmless, hence the reduction in pain?

I am really quite concerned about the risk of developing complications at a later stage in life as a result of GORD (particularly cancer), and am not sure whether the fluid in my throat is something to be particularly worried about?

I am booked in for an endoscopy in around a months time and the consultant I've seen has said he'll arange a ph test for me as well. He mentioned the possibility of surgery, but I must say, I'm really not very enthusiastic about the idea of having an operation, particularly after some of the horror stories I've read about them, although I do understand that many are successful. But at the moment my symptoms are more annoying than disabling and they do not currently impact on my quality of life significantly, and so I am quite reluctant to consider potentially risky surgery which may leave me feeling worse. Is surgery something that should only be considered if symptoms are very bad?

Apologies for the length of this first post! I'm really quite new to all of this, and am full of questions and worries about the future, especially as my partner is expecting our first child and I really want to try and make sure I'm around until my old age for the nipper!

Thanks,

Billy

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted Today 9:34 AM (GMT -6)   
Several patients seem to get better with their throat symptoms after 4-6 months on double dose PPIs. So, I would say stay on your PPIs for another 3 months or so - and see what happens. If you are feeling well, try tapering the PPIs off.

People usually get surgeries done when:
- High dose of PPIs are not reducing / eliminating their symptoms
- they don't want to keep taking PPIs forever
- PPIs are causing other problems (side effects)

In your case, since you are in the UK - you also have option of getting Linx surgery - which is an implant device that uses titanium magnets. It is still undergoing FDA review process in the US.

therefluxbadger
New Member


Date Joined Sep 2011
Total Posts : 10
   Posted Today 9:46 AM (GMT -6)   
Many thanks for the reply PPI-Less. I've just googled Linx surgery, which sounds interesting. No doubt it will be some time before it becomes available on the NHS, but something I've very interested to hear about. I'm also encouraged by your suggestion that some patients' throat symptoms get better after several months of PPIs, so I will certainly keep on with them.

Thanks,

Billy

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted Today 1:06 PM (GMT -6)   
Welcome to a fellow Brit!!

Just wondering if you've been tested for Helicobacter - make sure they do biopsy for that during your scope and test for coeliac disease too. I mention it because the NHS process is slow and they tend to stick everybody on the gastroscopy conveyor belt as a starting point, but without necessarily doing a thorough job of the tests at that stage!! If the scope is arranged with a consultant you should be ok, but if it's direct access via your GP, you may want to double check that you're getting the Full Monty.

They are not likely to suggest surgery early on unless they find a huge hernia; they always push the medication first. Then if that fails they may think about surgery. It can take quite a long time on the ppis before you can decide if you've maxed out on any potential benefit. GORD is prone to peaks and troughs, for which you often won't have an obvious reason, so it takes ages to get an overview of how things are really going.

Lynx is available privately in Manchester and probably elsewhere. However, if you already have Barretts they won't consider you (no idea why but it's a no-no). Somewhere in Leeds does another procedure (TIF possibly ?).

Some people find changing their diet impacts on their symptoms and some natural products like licorice (DGL) and aloe vera help some folk too - it's all a question on experimenting and trying to pin down any main triggers. Having said that, no consultant (private or NHS) has ever asked me about diet or even alcohol (I wish!!).

Don't worry too much about cancer - your scope will tell you if there's any sign of dysplasia or Barretts. The risk of transformation of Barretts to cancer has been shown to be much lower than first thought and is only around 1% of cases - even if you have Barretts, your risk of other cancers (bowel, prostate etc) are far greater than any potential risk from your Barretts!

Welcome to the forum and good luck with your tests!

MMM
New stuff: GERD. Interstitial Cystitis
Lifelong stuff: Food allergies, eczema, asthma

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted Today 1:09 PM (GMT -6)   
PS: Forgot the other GERD mantra you'll get from us all - RAISE THE HEAD OF THE BED !!
New stuff: GERD. Interstitial Cystitis
Lifelong stuff: Food allergies, eczema, asthma

therefluxbadger
New Member


Date Joined Sep 2011
Total Posts : 10
   Posted Today 2:03 PM (GMT -6)   
Thanks MMM. I've been tested for H. Pylori twice through stool samples, and was negative both times so that seems unlikely. My meeting today was with a gastro consultant, so hopefully he'll arrange the full range of tests. He did think it was important to check whether what I'm experiencing is definitely acid reflux, but what with the chest pains and the fluid in my throat/sore throat I think that seems very likely, especially as the ppis do seem to be alleviating most of the pain, if not the fluid in my throat.

I haven't really been able to link my Gord to any diet specifics. I stopped drinking alcohol for about six weeks and didn't notice a significant
improvement so I am drinking at the moment. I do notice a sore throat and hoarseness sometimes after a night out drinking with friends, but often
its occurrence almost feels random. Similarly, I stopped drinking caffeine
for a while, but as it seemed not to have a great impact I've gone back to
having a few cups of tea and coffee a day.

As I said previously, my gord at the moment only really causes me mild
discomfort and not severe symptoms, so I think I'll stick it out with the
PPIs for the time being and will perhaps consider the surgery if it becomes
more severe. I do worry about ending up with worse discomfort than when
I started!

Thanks for the reassuring comment re cancer - I am something of a worrier, so that's made me feel a bit better.

Really glad I found this forum, because I was beginning to feel a bit alone
with this and it's great to read about other people's experiences and the
options available for treatment, so thanks for taking the time to reply!

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted Today 2:22 PM (GMT -6)   
The jury is still out on the most reliable way to test for Helicobacter and it is very elusive - also if you were on a ppi at the time of the test you can get false negatives. Very worth getting them to do the 'gold standard' (biopsy) test for it whilst they're in there.

I always find it hard to correlate the degree of symptoms of reflux with the actual pathology that's going on, which of course is why we all get the pleasure of the endoscopy! You can have symptoms which are not too bad, but have lots of signs of inflammation inside, or you can feel terrible but have a virtually normal scope! I've had it both ways. After your scope, if there's little to report, you could always see how you get on with just Ranitidine. . . . But the doc will discuss all that, I'm sure.

Good luck!

MMM
New stuff: GERD. Interstitial Cystitis
Lifelong stuff: Food allergies, eczema, asthma
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