Veterans Dogbones, ARM and other friends, help me out here!

Sorry to hear of your problems. I really can't give you any answers but I do understand where your coming from with the doctors. Surely if you had reflux in the past then you have it now - isn't reflux caused by a weak sphincter or do I have that wrong. Is there anywhere else you could go to for a second opinion?
I find all these problems concerning digestion very difficult to fathom out.
If your in the UK have you thought about going to a private clinic that specialises in gut and digestive problems. Maybe they could shed some light on your situation .

Wish you well

Maria

Hi Rita,

I had failed sedation with gastroscopy and flashbacks as I woke up due to pain at the back of the throat but I couldn't speak or open my eyes. The last 2 were done under GA, which is the only way I will have it done now. I don't need another for 2 years luckily.

I have had second opinion - went privately and that's who diagnosed the Barretts and the reflux. Then I had private consultation with a surgeon and the manometry on the NHS as it costs £2000 privately.

I'm now waiting for an NHS appointment with a GI physician who I'm told has special interest in "upper IBS" and allergies (I've had allergies for 25 years and it predates the GERD symptoms). I also have an allergy consultant, who insists there is no connection between my stomach problem and my food allergies.

MMM

MMM-

That doesn't make any sense. The manometry doesn't tell whether you have reflux or not. The PH Study will, but you should have been going about your normal day and eating your trigger foods and drinks.
I would get a 2nd opinion and even a 2nd PH study if necessary. The manometry not showing any swallowing issues is good.

Since you have been dx with barretts you have to be refluxing.

Take care,
Bill

Thanks everyone -

Phil - my OH is a medic and he questioned the diagnosis of Barretts done from private gastroscopy. It was then reviewed by 2 pathologists who confirmed the Barretts, albeit small area. There was definitely nothing else to find, no eosinophils.

My next scope isn't due for a couple of years but I don't think we could cope with going to London, with the kids and all - we have no childcare support at all.

Bill, it may be the pH she was talking about as that was all normal too but she went on about the valve function being normal and that meaning I couldn't reflux? She was a registrar, so I've asked for a copy we can study at home. In particular it didn't say if the low levels of acid (within their normal range) correlated with the symptoms. There was a list of my symptoms at the top, then the figures over the rest of the page.

Barretts is evidence of reflux, but it can stay there even if you no longer have reflux, is what the consultant said.

I did 24 hours with the wire in, drank a ton of coffee and did loads of bending and moving about with housework. I didn't drink alcohol, fizzy drinks, fizzy water or fruit juice - they are all triggers but they were not allowed during the test. i won't be repeating the test - it was too awful. I'm done with all these awful procedures that have no therapeutic benefit. Maybe I'll feel different if I can get symptom free for a while!

MMM

PS: my worry about antidepressants is that I would then be addicted to another drug like the PPI. Also, I'm worried that people will just think it's all in my head as I now have no proof of the reflux!

MMM

Hi Phil, that's really very interesting, thank you. I hadn't thought of that - I wonder if there is a minimum Barretts size to qualify for ablation??

The next consultant I see will be signing me up for some local surveillance with a recall system, so I'll enquire about Halo.

As for pregnancy, I often wondered if that's where my Barretts came from - I was very very sick, vomiting up to 8 times a day and taking Zantac with the second one, and was pretty rough with the first. Unfortunately at my first scope no biopsies were done and it was done by a GP yielding an endoscope. Second and third were done by a cons GI physician and picked up the Barretts of 5 mm.

That's given me a more cheerful thought, thank you!

MMM

Hi MMM,

The manometry being normal has nothing to do with reflux (except perhaps the measurement of LES pressure).  The manometry measures your swallowing reflex and determines whether or not you have normal swallowing abilities.

The PH DeMeester score of 4 isn't the be all, end all.  I had three PH monitor testing results and one was 4, one was 10, and one was a little over 14, which I considered the top end of normal.  Still I had heartburn symptoms and uncontrollable asthma due to reflux. 

While my GI doc wouldn't refer me for surgery until my PCP hounded him for four years and finally sent me to a surgeon himself, he finally admitted that even a few good reflux episodes a day could cause a problem with my lungs.

If you've got esophagitis, you've got reflux.

It's a frustrating process, I know.  I wish you luck in getting it all sorted out!

Best wishes!

Denise

PS: I've edited my first post as my long spill seems to be causing confusion!

Thanks everyone for your replies and kind thoughts.

MMM

Hi MMM,

Sorry for the late reply. I don't get around here as much as I used to...

What can I say that hasn't already been said?

I am in the same boat. I was told that I probably had reflux in the past, but that my tests have shown that I do not have reflux now. If you did a PH test it shows acid only. If you do a PH impedance test it shows acidic, non-acidic and weakly acidic reflux. Difference being, if you are refluxing weakly acidic materials, your PH test would come back normal, only a PH impedence test would show it.

PH is the gold standard for these guys. I can reflux up to my brain on a Barium Swallow, but they don't care. That just shows one moment in time...and we ALL reflux. I forget how often each day, but its a lot. Believe it or not, reflux is NORMAL. :) That is good news. Of course, too much reflux is not...

Remember, there are people born with Barrett's. But still, if you were a betting person, I'd bet that odds are yours came from reflux, which sensitized your esophagus. Your reflux resolved, the Barrett's stayed, and symptoms stayed due to nerve hypersensitization. I'll check out your link (Haven't yet), and can share one I know of if you like...but it does happen. Nerves sensitize after being stimulated. Its well known...in many areas of the body, including the esophagus. So as unbelievable as it may be, don't discount what the doctor is telling you.

I myself can't believe the diagnosis given what I feel, but it is a valid, scientific medical diagnosis and I just have to trust the doctor on this one. I think you should too...until you get better evidence. Just remember...these doctors deal with this all the time, and in the case of my doctor, all day every day. So as much as I find it hard to believe his diagnosis, I'd be a 'mow-ran' as my wife says, to not trust it more than my own.

I've just heard of SSRI's to desensitize...and some other things are in the development pipeline but not available yet. If anything its solace that you may not have a reflux problem at this point in your life after all (lets hope so).

ARM

PS. I forgot to note, I freaked about my demeester score once, but a Dr. at Mayo Clinic told me to take a chill pill because demeester scores aren't all that great. In my case I had one long reflux event in the morning, and that made my demeester sky high. But those happen occasionally in life, and for all he knew it was just one of those days for me. You can get the same score via different avenues...dying of minimal reflux throughout the day, or getting one long event that may be an abherration.

Also, in terms of cancer risk women with symptoms still have such a low risk its crazy. Its similar to that for breast cancer in men. I wish I was a woman in that respect, and also because I would be smarter than I am now (since we all know that women are smarter than us brutes :) ) As a white male I worry about cancer risk a lot...

Post Edited (theacidrefluxman) : 9/2/2013 3:45:41 PM (GMT-6)

Thanks so much ARM, what you say is very helpful. I did have the most basic of tests - pH only, no buttons to press when symptomatic and nowhere to record your activity, except a space to write down when you go to bed!

In a way I've already experienced a similar problem as I had acute bladder pain for a long time, following on from one bad infection. I was tested for all kinds of other problems but nothing showed except a bit of inflammation. Eventually I got better. So I've already experienced the body responding to something that isn't "real".

I do wonder if the PPIs perpetuate the problem as you have no acid to stay accustomed to! I keep wondering about coming off the drugs now - no longer really understand what I'm taking it for and don't see any reason to worry about protecting my oesophagus if nothing travels up there!!

Thanks again.

MMM

Thanks for the support, much appreciated. Will give an update after the visit with the GI physician (my 3rd GI physician!!). Hope your symptoms behave for you!

MMM

Thanks Phil. I did have a look but it mostly was about back pain and fibromyalgia and psychosomatic pain in the back. I'll wait and see how the next consultant explains my inflammation and Barretts but am going to try reducing the PPI meanwhile so I can tell them what effect that has, both positive and negative, on my symptoms.


MMM