24 hr pH monitoring/bile reflux

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Hi

I have had two years of absolute misery, not just physical but also the despair and misery that accompanies any kind of reflux. Long story short (as I have posted details elsewhere in this forum), my symptoms are mostly the LPR kind - little heartburn, mostly respiratory; coughing, wheezing, sore throat, earache, sinus/nasal problems. My journey has taken me from GP to ENT/Endo/Gastro and round the block many times. Failed PPI, ranitidine, diet etc. All the usuals. Eventually, an endoscopy in November showed hiatal hernia and significant bile reflux. GI then sent me for manometry/24 hour PH monitoring with a view to having fundoplication. Not an easily undertaken option but when you get desperate enough, yes, you want it.

So, I just had the PH test and, sods law, I was practically symptom free from the moment the catheter went in, and the coughing and regurgitation returned within an hour of the tube being removed! I feel absolutely devastated that this test may not show what I usually feel, and that this long journey will be no further on.

The monitor was a Sandhill Sleuth and was set for two PH readings, one of which remained mostly between 1.5 and 2.0, the other mostly around 7.2 with regular peaks well above that but some at around 6.8

My concern is that the higher readings would presumably be the bile reflux so I hope there are enough above 7 to prove that, despite the lack of usual symptoms. I can only guess that the other reading must have been in my stomach. I didn't realise they did that but how else could that reading be constantly low PH? Has anyone else had their symptoms just disappear on the day of the test? Is this common? I am so upset that my 'day' was atypical and am very worried that my care/treatment plan may be discontinued now. I am to make an appointment directly with my very nice GI; results in about 4 weeks. I know I will not be able to go on much longer if my test results don't show what I normally experience and this route is then denied me.

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  • Posted

    Hi Anxious Alex

    I am in the same position. Suffered for 2 years and getting worse. Diagnosed with HH on endoscopy (which mysteriously disappeared on barium swallow). No reflux showed up. Couldn't manage the 24 hr pH test as I gagged too much. I have a great consultant but he refuses to operate as the tests do not show anything abnormal (ha!).

    I can hardly sleep as I feel my stomach is under my ribs and pressing on everything. Can't breathe most of the time and quite frankly I have had enough.

    I tried to back up my claim by paying for Pepsin testing (~£60). It was off the scale. (scary). Hope they will listen now. I have been in touch with a private clinic to get this fixed using the magnetic beads (I might have to sell all my possesions but I can't go on much longer)

    NO ONE SEEMS TO LISTEN

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  • Posted

    Moonbuggy, you have my sympathy. I truly understand and empathise when you say you cant go on much longer. No, the manometry/PH study aren't pleasant. I just found a point on the wall to focus on, concentrated on breathing and somehow got through it.

    Has anyone anyone anyone had a similar experience with the PH testing, especially when bile is the suspectedculprit? Can anyone explain what the readings/levels on my monitor were?

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  • Posted

    Hi Alex.

    The problem with LPR is the Pepsin (this is what does the damage). This is active at pH 6.5 which is much higher than normal pH of acid reflux. I have read somewhere that you can have normal readings and still have reflux (bit of a waste of time then)

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  • Posted

    Hi Moonbuggy

    There are several other threads on here that go in to pepsin etc (one of which I started - https://patient.info/forums/discuss/lpr-silent-reflux-desperately-in-need-of-a-miracle-has-anyone-recovered-from-this--38289 ) and you will find lots of people sharing thoughts and experiences about many diverse aspects of and approaches to LPR, including pepsin damage and pepsin tests. It's mentioned frequently in that thread. Alternatively, you could start a thread yourself to get comments addressing your particular concerns. That way you will get more specific responses than you will under the heading of this discussion. I'd really like this thread not to stray away from the topics of of bile reflux and 24 hour pH testing as those are my specific questions at this moment and other aspects are well covered in other discussions.

    Best wishes

    Alex

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  • Posted

    Hi Alex and thank you for the private mail earlier.

    I keep a record of my expectoration's. I record mainly the amount and sometimes when it merits, I will record the stickiness/or not of the mucus. I will also record what I had eaten before I see seeing something to record. I found that I had more coughing generally when I had tonsil stones but now that my tonsils have gone, I must admit the cough I produce is less but still significant. The point is that I also had pH manometry last year and your post prompted me to check on the amount of mucus production. I found that I had mucus production but much less compared to day before and the day after. In fact the lowest reading over a 2 week comparison. Wow, well that may be significant. Perhaps the gag reflex was exercised more when the tube was inserted. Another mention on this subject is that strangely enough I have a neighbour who "was" also suffering the conditions we speak about on the forum and we used to compare our own personal stories and notes over a perhaps 2 year period. Then one day she went for an endoscope and miraculously stopped her coughing and regurgitation immediately after. She regurgitated her food as well as mucus. I never have any issue with food. Her theory is that there was probably something corrected with the endoscope procedure. Her doctors were amazed but did not explain the relieving result.

    I have also written in on another discussion relating my own issues. I had an endoscope and a CT scan of my sinuses and throat last Tuesday and have already received a simple report from the GI. I am due to see him in 2 days for a fuller consultation. I will report what he relays to me. From the simple report I gather I have grade 2 oesophagitis and mild gastitis of the antrum. No Hiatus Hernia (I was told had had HH way back in 2009 - but I have been dropping down on my heels upon waking and drinking about 1 to 1.5 litres of alkaline ater. Did that fix it? Was it an incorrect diagnosis in 2009 or even in my short report I received from last weeks endoscope??) Too may questions and not enough answers.

    I never had any proper diagnosis of my manometry but still hold the result so will take that to my GI next week and see if I can get more of an explanation. I was simply told that I had significant reflux. Adversely, I was told following my barium swallow that I did not have reflus in 2012 and that I did in 2011. I also refused to have the 2012 barium swallow on the original day of the appointment as just like you, sods law prevailed and on the morning of the procedure I felt completely cough free. When I did have it a week later, I recall that I was congested with mucus but the result showed no reflux. I can't figure it out. Docs simply rub their heads or play with their beards.

    Another thing to report is that I also had a consultation with my ENT doc and asked him to give me a scope which he explained only takes the view to the voice box from the nostril. He found significant mucus which he said explained my ear aches and echo of my own voice and another probe in my ear to confirm fluid in my ears. Consequently. he prescribed Clatrithromycin 500 mgs twice a day for 10 days and Otrivine (avaliable over the counter) for maximum of the 10 days to avoid the danger of my sinuses getting used to it. And then he sent me for a CT scan for my sinuses and I requested that they scanned down to my throat level as the problem is there also. One call from the radiologist to my ENT secured the further test. I will be seeing him once I complete my antibiotics which by the way have been clearing my ears. Oh, another discovery he made was that I had one (not both) inflamed lingual tonsil. I have related this on my other post but is that sheer bad luck or symptomatic having just undergone a tonsillectomy of my palatine tonsils just 4 months ago. Is it also telling that my tonsillectomy procedure was complicated because the tonsils were stuck to my throat. I wondered if it the corrosive nature of the acids? bile? refluxing.

    I have managed to step up my tests and consultations because I have private cover but the truth is that I have not felt that I am able to go back to work since having completed a contract role last May and I am desperate to get better so I can perform well in my next role.

    My firm favourite reducer of the mucus is liquorice tea, not DGL and not even the sweets which I enjoy eating for the pleasure if noth therapeutically. Anyway, I bought a glut of the stuff. Still continuing to drink the pH water. Results are too erratic to conclude on but I have definitely been getting some relief compared to say a year ago. I've lived with this since 2006. I am tired and will not accept there is no answer. I wish I had a miraculous recovery like my neighbour but it seems there is some damage after all to my oesophagus and now I have to work out with hints and tips from you guys and my docs.

    What I find is interesting is how many people report their issues commencing after a flue or something similar and following taking antibiotics. I said as much to my GI doc who said he'd like to read this forum and asked him if it could be candida in the throat. He said possible and that he will check for that during my endoscope. The short report does not tell me anything more on that and I will pick up that thread when I see him and report back here.

    I have been increasingly thinking that I shall get one of my geeky chums to draw up a simple database for us all to complete with respect to our symptoms, anecdotes on what helps, what tests show etc. What do you guys think. We can then invite doctors, perhaps even pharmaceutical companies (don't shoot me), twho may be interested if we can push them in the symptom free direction - I happen to know a chemist who works for one of the giants to consider if the giant may put some funding together for looking into this mysterious disease that is baffling us all. Your thoughts welcome.

    Another idea I have may be to take myself off to an ayurvedic clinic in India that treats gastric problems with near starvation and parasitic removal procedures and then re-boot the stomach with goodness and probiotics. But that takes weeks of therapy and I want a fast track solution.

    Good luck Alex with your next steps and it is heartening to know we support each other on this forum to take the time to relay or ask relevant questions.

    Best wishes also to all the soldiers out there looking for answers. We are an erudite bunch and I am sure we will get results by sharing our stories.

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  • Posted

    Hi Alex, so sorry to hear you are also suffering from this awful condition

    I had the p h monitoring and it came back completely normal! I was so

    Frustrated and deflated that was 21/2 years ago and I'm still suffering

    On a daily basis!, I can only suggest that you really have to be

    Totally adamant that you cannot carry on like this any more. I'm off

    To see a top specialist soon because my voice box has been affected

    By all the symptoms, exactly the same ones as you. My life is a constant

    Struggle but I'm going to keep going back until I get some answers and hopefully

    Some miracle cure, I have tried all the treatments out there, nothing works.

    So many things seem to irritate this condition. Bending lifting sitting

    Everyday activities. I will keep you posted. Please be reassured it's

    Nothing sinister. I have had two MRI scans neck/ Brain and they came back normal.

    It's the awful pain and uncomfortableness and strange feelings that's so scary

    Some days it's unbearable, I get worried over the long term damage , on the outside you look fine. Take care

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    • Posted

      Hi, interested to read your post. I have been struggling like this on and off for about 3 years. Have you found any cure, I am always worried that I have something moe sinister because I can't see how something like this can't be cured. It is driving me insane, have you tried sucralfate and how did it affect you?
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  • Posted

    Alex, I'm very concerned that you say that you will not be able to go on much longer. What do you mean by that? Are you having suicidal thoughts?
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  • Posted

    Hi Sourtongue. The frustrating thing is how bad my symptoms were before the catheter went in and as soon as it came out again. It was just during the test itself that I was symptom free so I can't help wondering if the presence if the catheter somehow impedes the reflux. I dont know what the readings on display meant but, as it's bile reflux my GI was looking for (which showed on endoscopy) I'm praying that the amount of time I spent bobbing up into the mid 7s and occasionally higher will be evidence enough. In the meantime, i think I'm going to be very anxious until I see my GI again, which won't be for at least four weeks. I've read so many times about others who have had their one day, their one shot, to be assessed and having had a good day, are then told they're normal. I've had two years of failed referrals, treatments, therapies etc and it all rests on this now. My life is utterly miserable, my job has become a daily round of tears and frustration, as well as the worry of not being able to do it any longer. I don't want to still be in this position another two years down the line. I've been on antidepressants since December as by then I was already finding it hard to be positive or to cope with the symptoms. I'm sitting here now, gurgling and mucousy, my sinuses flooded and painful, coughing and clearing all the time and wondering why the hell it stopped on the only day I didn't wish for it! I guess I was just hoping to hear from someone with the same type of reflux (bile) who'd had a similar experience on the monitoring, who could tell me that my readings will prove what they need to. Wishful thinking. Anyone?
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  • Posted

    Rickey, that's not really a suicidal statement, more just an expression of absolute desperation. That said, I have had many days when I have thought about suicide or, at least, gone to sleep praying I wouldn't wake up. And I know from speaking to others that I'm not alone in being driven to such thoughts by this illness. But no, it was not a statement of intent. I just can't envisage how my life can continue like this. I'm on antidepressants, entirely because of this illness. My GP and GI are aware it's having an impact on my mental and emotional wellbeing. How much remains to be seen!
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  • Posted

    Alex, first of all I'm very relieved to hear that you are not considering that anymore! I have had LPR myself for over a year but wasn't diagnosed until last Sept. I can relate to you in many ways as far as the anxiety, depression, defeated thoughts and despair. I was living in major fear of LPR and what it was doing to me. I have been doing much better as of late. I had the monametry, upper GI, and Cat scan. Everything came back normal. That was in December. I had been on protonix for six months. I decided (through God's grace) I was not going to let this LPR control my life anymore. I attribute that to my faith in Jesus Christ and some biblical counseling. I am at peace with this state
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  • Posted

    currently and have decided not to undergo any more tests for now. I know on my part there are things that I have to do in order to help my body and heal. This all has shown me that I'm not in control of much of anything except what I choose to put in my mouth and how I respond to it in hope rather than fear. What is one thing that you are having the most difficult time with? I believe God is aware of your pain and suffering and will not leave you helpless and alone to suffer it meaninglessly.

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  • Posted

    Rickey, bile reflux tends not to respond to lifestyle and dietary changes the way that acid reflux does, hence I have had no joy from anything I've tried in two years, nor acid suppressant drugs. And I most certainly will never take any of those again, as I need the acid to lower the ph caused by bile. This now explains why, contrary to the accepted school of thought on reflux, I feel significantly better after drinking wine. I tried it when I had the monitor on to see if I was right and, sure enough, down came my ph to an acceptable 6 ish while I sipped a glass of Pinot Grigio blush. I'm glad you have comfort from your faith. However. I'm not a believer in god - each to their own; I have my beliefs as you have yours. But, as I say, I'm glad your faith is of comfort to you.
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    • Posted

      Hello Alex,

      I came accross your interesting thread because I too had bad LPR reflux and on the one day I got my PH monitoring test, all symptoms went away! As soon as the catheter was removed, an hour later, all the bad symptoms resumed! Im so confused I cannot explain it.

      Why did the symptoms virtually dissappear on the testing day? Ive had good days here and there but never symptom free! Was it pure bad luck that the one symptom free day happened to coincide with the testing day??

      Have you found an explanation to what happened to you?  What did the results say by the way?  How are you feeling now?

      I know your post is a bit old but lets still here from you.  Hope you're feeling much much better.

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    • Posted

      Hi,

      Sorry to hera about this. I have been struggling with supposed gastritis and on  many occassions that I am due to have an endoscopy or a specialists appt my symptoms are very often less severe. I am starting to think it is in my head !! Although I know it isn't because whenever the resilts come back they always find mild to severe stomach inflammation.

      I am worried to go through with the ph test becasue of what you ahve said,,,,,,,,,my specialist is just looking for an excuse to get me off his books and I really hope that the ph test when/if I get it done will not be like yours.

      Have you ever managed to find a link between your better days and worse days because I never had. The only thing I can say is that when i eat high calorie stodgy food I feel so much better. My system feels flushed out and when I eat less food and more healthily I can never fully evacuate!! Sorry for details!! I also feel better when drinking!! WEIRD!!

      Any way, hope your results do show something useful......let me know how you are getting on.

      Paul

       

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