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

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mudmagnetmum
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Date Joined Apr 2011
Total Posts : 1604
   Posted 8/31/2013 4:37 AM (GMT -6)   
Hi all

A month ago I went for manometry and pH monitoring, having finally seen a surgeon. I wanted to know if I was suitable for surgery and I no longer wanted the "if you did manometry..." hanging over me. Previous gastroscopies and biopsies and the finding of a small area of Barretts (< 3 cm so doesn't qualify for any excitement according to the new guidelines) lead to diagnosis of reflux. Other findings mild gastritis, mild oesophagitis, no ulcers, no helicobacter, no coeliac disease. Told reflux and symptoms fit with reflux (pain after known triggers, burning sensation up throat, nausea, discomfort, feel worse mornings and when hungry, worse lying down or bending after eating, poor tolerance of coffee, alcohol etc).

The results of the manometry/pH monitoring showed NO reflux at all, not even over night, despite loads of coffee and the bed being flat. Demeester score 4. Am now told I do NOT have reflux. Known triggers were banned during the test but I was told that made no difference as the manometry and the co-ordination of movement etc show reflux is not the problem. Told must have had reflux in the past to cause the Barretts, most insistent on 2 yearly scopes for the Barretts even though no evidence of the Barretts having acid splashed over it anymore. This is a problem as I do not tolerate gastroscopy.

Conclusion made is that I may have hypersensitive oesophagus. Not a total shock as I thought I may have that, but I thought I had it in combination with actual reflux!! Also, from what I've read reflux can cause it?? So, I don't have reflux, but I did have reflux?! When? What causes the terrible pain during flare ups?

If I don't have reflux presumably coffee, alcohol etc will do me no harm, even if they make me symptomatic? So in theory I could cut down the PPI, tho I have been recommended to stay on a low dose for the gastritis.

My response to PPIs has always been partial, so now that makes a bit more sense, but I'm left with not being able to see a future where I can lead a normal life as nothing impacts enough on the pain and discomfort. Gaviscon and Carafate give me terrible nausea. Metaclopramide didn't help. I'm not at all happy at the thought of being given anti-depressants to treat my stomach!

I'm to go back to the GI physicians. Three years ago I begged for "parle" with them about my symptoms, but no one would listen, I just got forced into gastroscopy. Now I am back where I was 3 years ago, hoping someone will discuss my symptoms without saying "have a gastroscopy".

I feel thrown by this news and my children and family are disappointed too. Is there a way to desensitise??

MMM
GERD (3 years and counting)
Lifelong stuff: Food allergies/intolerance, eczema, asthma

Post Edited (mudmagnetmum) : 9/1/2013 1:46:11 AM (GMT-6)


Mcedge
Regular Member


Date Joined Aug 2013
Total Posts : 292
   Posted 8/31/2013 5:13 AM (GMT -6)   
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

reet22
Regular Member


Date Joined Jan 2013
Total Posts : 146
   Posted 8/31/2013 5:47 AM (GMT -6)   
Hi mmm I'm so sorry nothing is helping you to sort out your reflux symptoms. I am sort of going through the same as you my difference is I had a fundo here in uk in 2001, it lasted 9 years but symptoms have returned. My original surgeon dismissed me when the endoscopy came back normal despite my dad dying at 47 with cancer of oesophagus.I have seen Consultants and had tests but have now found a Consultant who is looking at the wrap (the others did not) before trying to diagnose all these awful symptoms. Ignore my rabbiting what I wanted to say was if they wish you to have a gastroscopy please do what I did. I am the worlds worse woss, I asked for everything to put me out also I had the throat spray. They put a needle into my arm and that was it, I came round in recovery, remembering nothing, had a cup of tea & biscuits. I'm having a high resolution manometry at Nottingham hospital. This I wish I could be put out for but obviously that would not be practical! Best wishes Rita

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 8/31/2013 6:40 AM (GMT -6)   
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
GERD (3 years and counting)
Lifelong stuff: Food allergies/intolerance, eczema, asthma

phil-uk
Regular Member


Date Joined Jul 2012
Total Posts : 190
   Posted 8/31/2013 11:08 AM (GMT -6)   
Hi mum,

You have done really well to get this far with your diagnosis.
To explain the lack of help from ppi's and other anti-acid medications is very useful.
I would certainly be trying the anti-depressants to see if there was an effect. This treatment has had success with some IBS patients.

With regard to the Gastroscopy, and perhaps the hypersensitivity, how about getting a referral to one of the specialist London Hospitals? For example I am hoping to get my next Gastroscopy at University College Hospital. They have a number of newer, less intrusive devices on trial.

http://www.uclh.org/OurServices/ServiceA-Z/GI/UGI/Pages/Home.aspx

Cheers Phil

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 8/31/2013 12:11 PM (GMT -6)   
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 devil
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11

GC1pink
Veteran Member


Date Joined Nov 2012
Total Posts : 532
   Posted 8/31/2013 12:13 PM (GMT -6)   
Hi Mudmagnetmum,
 
Sorry to hear that you are having such a rough time.
 
I myself have some PH study problems - had a basic PH Test last year which showed no reflux, still my chest pains continued, then progressed to LPR (private pepsin test proved that one) and have now had an Ambulatory PH test and High Resolution Manometry - this time PH study showed 4.4%  and noted the 91 events that were weakly acid and gas, the SAP score of 94.8 confirms close association between symptoms and reflux events - so even weak reflux and gas can cause your symptoms, as it is certainly contributing to mine - but you do need a special test to get this done.
 
How were your manometry results? :-)   I have a hypotensive LES coupled with spasms and weak peristalsis!

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 8/31/2013 12:28 PM (GMT -6)   
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
GERD (3 years and counting)
Lifelong stuff: Food allergies/intolerance, eczema, asthma

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 8/31/2013 12:30 PM (GMT -6)   
GC1pink- the manometry was entirely normal. They're so thrilled when they give you these normal results - like it's a deep joy that you tortured yourself for nothing! Though as Phil says, it at least makes sense of my PPI experience.

MMM
GERD (3 years and counting)
Lifelong stuff: Food allergies/intolerance, eczema, asthma

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 8/31/2013 12:37 PM (GMT -6)   
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
GERD (3 years and counting)
Lifelong stuff: Food allergies/intolerance, eczema, asthma

phil-uk
Regular Member


Date Joined Jul 2012
Total Posts : 190
   Posted 8/31/2013 2:36 PM (GMT -6)   
Hi mum, it's probably not in your head, more likely in your gut. Try googling second brain or enteritic nervous system.

Perhaps the Barretts came from much earlier reflux, say in childhood, or maybe during pregnancy?

This new info means it may be worth considering one of the forms of Ablation at some point, to remove the Barretts.

A new UK clinical trial comparing ablation, with surveillance is about to report.

"This study compared surveillance to Halo, in individuals with low grade dysplasia and there was such a significant difference between the groups, that the study was stopped early and the surveillance group, were offered halo. "

Cheers

Phil

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 8/31/2013 3:58 PM (GMT -6)   
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
GERD (3 years and counting)
Lifelong stuff: Food allergies/intolerance, eczema, asthma

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 8/31/2013 4:14 PM (GMT -6)   
PS: the other confusing factor is the mild oesophagitis, but if it's not being caused by acid then I hope Halo would be a possibility.....
GERD (3 years and counting)
Lifelong stuff: Food allergies/intolerance, eczema, asthma

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 8/31/2013 8:54 PM (GMT -6)   
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
GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”
Eckhart Tolle

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 9/1/2013 1:34 AM (GMT -6)   
Hi Denise,

I seem to have confused people. I have been told based on the 24 hour pH monitoring together with the manometry that I don't have reflux. The valve functions normally, acid levels were minimal. And I have the poor response to PPI. The test showed no acid exposure as far as I know, but if I get a copy may be I can fill people in a bit more. The gastroscopies and the manometry are just too much for me - I can't put myself through any more just on the off chance it would show something different.

MMM
GERD (3 years and counting)
Lifelong stuff: Food allergies/intolerance, eczema, asthma

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 9/1/2013 1:47 AM (GMT -6)   
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
GERD (3 years and counting)
Lifelong stuff: Food allergies/intolerance, eczema, asthma

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 9/2/2013 4:31 AM (GMT -6)   
gut.bmj.com/content/51/6/885.full

This looks to be an interesting article for anyone with similar issues. Haven't waded through the whole thing yet myself.

MMM

theacidrefluxman
Veteran Member


Date Joined Oct 2009
Total Posts : 739
   Posted 9/2/2013 3:41 PM (GMT -6)   
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)


DOGGBONES
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Date Joined Apr 2012
Total Posts : 707
   Posted 9/3/2013 7:05 AM (GMT -6)   
MMM,
Sorry to hear about things not going well for you lately. I'm not on the board as much these days, as every day life has been very taxing. I still try to peek in and see if there's any advice I can offer ppl.
 
Looks like some of the "old vets" here have gave you some good advice but I will try to add as well.
 
So you have barretts but no reflux currently....I would agree it may have been caused during pregnancy considering how sick you were. Now it becomes how to fix the damage. I for one still take manuka honey daily to try to reverse the damage from gerd. Some places in the US (not sure about UK) dr's won't preform "HALO" unless you have high grade dysplasia. Anti-d's help with hypersensitivity but I only prefer short term.
 
Halo is something to consider, however I would wait a bit (you don't want to trade one prob for another). I would not get any reflux surgery at this point (nissen/linx), as I don't believe it will offer any relief in your case (you currently are not having major reflux).
 
PPI's are evil but sometimes a necessary evil. Taking them may help your throat heal and become less hypersensitive over time.

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 9/3/2013 7:46 AM (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
GERD (3 years and counting)
Lifelong stuff: Food allergies/intolerance, eczema, asthma

theacidrefluxman
Veteran Member


Date Joined Oct 2009
Total Posts : 739
   Posted 9/3/2013 8:30 AM (GMT -6)   
Hi MMM,

Good points. Just as an FYI, PPI's do have a modest anti-EAC effect, and they are recommended for people with Barrett's. Not sure about your case though, since you were told that you currently have no reflux.

I have good times and bad, both on and off PPI's. I only go on them when its bad, and I usually come off them when its bad. They don't seem to really help, except when I am having a bad stretch and take them out of desperation. Confusing!

Stay on the board and I'll come on by to see what happens. I wish you all the best, tough decisions for sure.

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 9/3/2013 2:19 PM (GMT -6)   
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
GERD (3 years and counting)
Lifelong stuff: Food allergies/intolerance, eczema, asthma

phil-uk
Regular Member


Date Joined Jul 2012
Total Posts : 190
   Posted 9/4/2013 6:43 AM (GMT -6)   
Hi mum, not sure if this is any help, but quite a while ago I went through a bad time with IBS-D and other symptoms and ended up doing quite a bit of research on the mind/gut connection.
One area of this wide ranging subject that I was reminded of while reading your recent posts
 
"In a way I've already experienced a similar problem..."
 
was that of TMS (Tension Myositis Syndrome), and I thought a small amount of time reading around this area might reveal some insight.
I'm not sure about posting links to other websites [mods], so will leave you to google!
 
Cheers
 
Phil

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 9/5/2013 12:42 AM (GMT -6)   
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

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 1/29/2014 4:15 PM (GMT -6)   
An update for those who dropped in to help out back in August!

I've finally seen the GI physician I was referred to - boy is the NHS slow....... !

The new consultant's opinion is that I DO have reflux but I have it intermittently. He said one normal test doesn't rule out reflux, and that the diagnosis isn't based only on the tests but on the clinical picture. He agreed it's not bad enough to be considered for surgery and didn't offer any other treatments, except the suggestion of taking extra Zantac when symptomatic (I'm currently off PPIs since August). He was very reassuring about the Barretts area and because it's so small it may not need indefinite regular testing but he would like to look at himself later this year to confirm what was found before. I've been promised very heavy sedation for that based on my prior experience.

He also said that I probably do have a sensitive oesophagus. So I have intermittent reflux and an oesophagus that is oversensitive to the reflux when it does happen........ and no suggestions how to decrease the sensitivity or the reflux, which he said could be in response to stress. Maybe if they ever decide I don't need gastroscopies any more I'll stop being stressed!!

MMM
GERD (3 years and counting)
Lifelong stuff: Food allergies/intolerance, eczema, asthma
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