Hi there,
First of all hello to the community. I've been lurking this and other GERD forums for a number of years now and after reading countless pages of helpful information and finally gaining at least a faint sense of direction on how to deal with my conditions I think it may be time to take the plunge.
I said to myself that I wouldn't have a wall of text as my first post but here we are >.< The TLDR is directly below for the heart of the matter.
Foreword: I have to make this absolutely clear, the reflux I have, I have been facing for over 20 years since infancy. This didn't just spring up a month ago. It's important to understand this. This problem is here to stay and the further I spend my time researching the more I discover that my options are stretching thin.REALLY TL;DR (YOU HAVE BEEN WARNED): I have just experienced the benefits of Gaviscon for the first time after dealing with virtually unmedicated GERD some 20 years. I am currently taking 2-4 tablets of Gaviscon Extra-Strength daily (Canadian variety). This has probably been one of the most life-changing moments in my entire history of dealing with this disease. It seems too perfect...
Given my lack of surgical options (explained below if you wish to continue reading) this is about
the only thing that helps me deal with GERD daily while not being associated with the harmful effects of PPIs and H2 blockers. Can this medication be used reliably and long-term (think 5-10 years +) for an extended period of time? Would love to hear from some experienced people sharing their wisdom. Also bonus, would anyone recommend the liquid over the tablets for any reason?
Long rambling history ahead, read at your own expense.
Sorry to sound terribly dry but here's an overview of the problematic areas in my health.
> In my 20s
> Born with TEF/EA - Essentially an esophagus that was not connected, had it repaired at birth.
> Growing up I dealt with strictures - food getting stuck. Also serious reflux, but I was too young at the time to understand that it wasn't the "normal" human experience.
>Related - I would say that the reflux is as bad today as it was from my first memory of it in childhood. I just didn't know any better so I didn't complain.
> Had several dilatations to my esophagus, which helped GREATLY with the narrowness and swallowing. Eating food is virtually a non issue, not literally speaking but I have learned how to manage my portions and accommodate my limitations. The reflux remained a constant discomfort.
> Getting into my teens, round 15-16 years of age the reflux began to worsen. I also smoked cigarettes and drank until about
20 which is most likely partially responsible for the accelerated worsening condition of my esophagus much to my dismay. Hindsight is the best :). But above all I just yearned for the regular experience of growing up, drugs and all included.
> Present day. Serious GERD issues that are severely problematic in my day to day functioning. Apparently it's extremely common with my defect. Skipped all of the doctor visits and so on, that information will pop up here and there if relevant.
> Confirmed diagnosis of Barrets Esophagus at 21 years of age.
> I am NOT overweight, like so many brochures I've read tend to suggest. In fact I am leaning towards the underweight classification. That said I do not have any eating disorders not related to having GERD, if you are being technical about
it I suppose. Things like eating less or skipping on meals because of the pain the reflux brings are common but nothing outside of that scope.
So, my main day to day struggle, the thing that haunts and rules over my life is my unrelenting GERD symptoms which just do not give it a rest no matter what I do. I suspect it has something to do with damaged nerves or something of the sort in relation to the surgeries at infancy that prevent the LES from working as it should but I have never been able to get a straight answer from any doctor - family or otherwise.
At the present day it feels like there is absolutely no barrier between my esophagus and stomach. Acid just likes to travel wherever it likes. It's especially bad with water or soup but in general it's just hell all around as many of you experience it :(
That said, with all of this negativity comes something positive. Something that has evaded my knowledge for so many years it's irritating. How could I have not heard a single suggestion from any doctor that I've seen about
this? They all pushed for the unified agenda of keeping me on Prevacid, Ranitidine, Pantoprazole and so on. Thanks to forums like this, and some wary Youtube users I have been informed by the community on the rather unsettling long-term effects of the aforementioned drugs. I've always had an aversion to pills since childhood (even if we may disagree on this aspect, I don't look down on anyone taking something which makes their life worth living), even commonplace OTC drugs like Advil and Tylenol, and now I had solid proof of why I shouldn't go down the road of these acid suppressants. As I said earlier I did not recieve a single recommendation for this "new" medication, Gaviscon from any of the doctors/physicians that I was or am currently seeing.
They also ruled out any chance of having a Nissen Fundoplication done due to my original condition and repair so that left me with no surgical choice. An ultimatum was offered:
"Go on the PPIs and H2 blockers for the rest of your life. We cannot do anything else for you."
To add insult to injury, the "head" physician for whom I waited 4 months to see since booking my initial appointment, after being overly dismissive of my pain and suffering I had gone through and tried to express in the most sincere and collected fashion that I could muster, offered nothing but a plain print-out of a "GERD Pamphlet" filled with the same worn out "tips" on how to prevent GERD that all of us are only too tired and weary of reading over and over again. That completely shattered my confidence in ever getting better. I've only ever been back to get a routine endoscopy done and that is how the nature of my future visits shall remain.
*Note* There are great doctors and lousy ones, as it is with any profession. It just so happened that I was slightly unlucky. I am not condemning all doctors. I've seen some fantastic doctors in my youth and took it for granted.
Phew... okay I think that about
covers the medical side. Now a touch of real life complications that I have been facing.
Because of the nature of this reflux - being that it is an ever present raging fire at worst, and a faint but truly vile ember at best... unless I basically starve myself, it makes it extremely, extremely difficult to keep a consistent and healthy sleep and diet schedule. As a result I am unemployed and cannot realistically put myself through any post secondary education without experiencing some kind of backlash from the reflux that I have to face every day, which would ultimately result me in dropping out. This is quite serious as you might have gathered.
So, that positive thing I mentioned. Last week I bought a container of Gaviscon Extra-Strength with the following ingredients as listed on the bottle:
Medical Ingredients:313mg Alginic Acid (derived from brown seaweed)
63mg Magnesium Carbonate/tablet.
Ingredients:(alpha) butterscotch flavour
calcium stearate
sodium bicarbonate
sugar
You may notice it has no aluminium unlike the American variety of the same drug, strangely enough. This was the selling point which got me really excited as I anticipated my search for THE reflux medication to be over. Read the two links below for more insight.
MANY THANKS to the users in these threads for pointing me in the right direction:
forums.heartburn-help.com/showthread.php?7447-How-can-I-obtain-Gaviscon-Advanceforums.heartburn-help.com/showthread.php?7525-Canadian-Gaviscon-NO-ALUMINUM!Immediate results! However it still requires some work on your part as I've learned. Of course it doesn't mean you can eat whatever you want. Diet restrictions still have to be upheld. But now, this means that at night when I am in the dreaded reclined position of sleeping, instead of acid freely flowing up my esophagus it instead comes into contact with the so called raft that is formed by the compounds in the tablet. I have to be completely honest here. For the first few days I felt severe anxiety at being able to lie down almost flat on a bed without the burning sensation of acid creeping up on you. That strange anxiety is still there on occasional nights but I understand it will pass as my body adjusts to the change. It reminded me of something I've heard a few years prior. Consider this hypothetical situation:
If a slave is beat every day at precisely 4pm for a long enough period of time without breaking routine for it to become standard practice, what do you think he would do if on a whim suddenly his owner set him free? Yes, after enduring the abuse for however long it took to become ingrained in his psyche, he would proceed to mimic the treatment he became accustomed to, and continue to inflict the routine upon himself.Sorry for the somewhat unsightly and awkward example but this is a good representation of what it was like. I expected the pain to be there, but it simply did not present itself. After so many years I could finally manage this thing that has slowed my life to an absolute crawl. It's not perfect by any means even if I hailed it as such several times while writing this, but it's a thousandfold times better than taking a PPI or H2 blocker which did absolutely nothing for the physical contents of the stomach traveling up my esophagus. I would still wake up with a sore burning throat and a hoarse voice during the period where I gave the physician prescribed anti reflux medications a fair go.
I intend to keep using this medication for as long as it is safe to do so. Yes, it really is that beneficial to me. The obvious and major downside to my "plan" is that without a steady stream of Gaviscon I am essentially back to my depressed, and in pain miserable self. I am still not eating as much as I'd like or in the amounts that suit my height in order to maintain a "healthy" body weight but at this point only time will tell whether I can transcend that weight goal. I've been told my entire childhood that things would get better by themselves and I am left bitterly disappointed. I have reasoned that as long as I am regularly eating the right variety of foods and am not feeling like I am going to pass out from moving 2 metres (been there), I'll be fine and people will just have to deal with my unconventional thin frame. Been skinny my entire life and that probably won't change any time soon. My ideal solution would be to continue adjusting my diet and furthering my own research into this disease in hopes of finding something more sustainable and natural but I am afraid that my LES is damaged beyond repair and any conceivable healing solely through diet management is a fool's hope at this point.
One last thing. If you have read this far you may have noticed that I left all of the expected depressive bits out. Suffice to say I've seen some dark solemn years and may see darker still. This condition as a whole has taken a heavy toll on me. That said I no longer see myself giving up the fight to self-healing in the foreseeable future. Thank you for reading.
Post Edited (Lostindespair) : 9/11/2016 6:50:35 PM (GMT-6)