Non-acid LPR + disability + anxiety = never ending cycle.

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Firstly sincere apologies if some of what I describe has been mentioned countless times. I've been reading so many posts here and elsewhere on the internet and read so much conflicting stuff that I don't know where to begin.  I'm just desperate for some help.

To set the scene: I have a severe congenital disability (Scoliosis - curvature of the spine) and as I've gotten older it has worsened. And as such has brought further issues. The most recent one being digestive problems.

I've always been a very fussy eater, and am not only very petite in height but I'm underweight too. As such my eating patterns have often been skewed and I confess to having eaten too much junk but I'm trying to change that now. My troubles began back in November 2013 when I first presented with Gastritis-like symptoms, caused by taking too much ibuprofen on an empty stomach, as well as stress/anxiety. After numerous trips to the doctors, usually seeing a different GP each time I was put on Omeprazole. It seemed to help after a few weeks so I stopped taking it (I had been told to take it as and when, I believe, at first). Blood tests and h.pylori all came back negative/normal.

Needless to say I was back on it again in no time and have had no respite since. I was referred to a gastroenterologist whose care I have been under for about year or so now. I’d been on 40mg Esomeprazole once daily for longer than I care to remember. But following my latest appointment 5 weeks ago this has been reduced to 20mg. The GI doctor didn’t actually say why he was reducing it but since my main symptoms were burping, the feeling of a ball of wind trapped in my chest, bloating and nausea he also prescribed Domperidone, and told me to stop taking Gaviscon Advance (which I’d originally been told to take frequently, by him!) He said he suspected I could have a touch of IBS as well and having Googled it I felt there may have been some accuracy there given my inability to stomach apples, dairy and so on. He suggested the FODMAP diet so I’ve started to follow that – cutting out gluten and lactose as much as possible. I’m awaiting an appointment with a dietician to help with this but some of the foods recommended on there are bad for reflux and vice versa. 

One thing I couldn’t fathom and not sure at what point I’ve mentioned it to him (always feel rushed and though I take notes with questions to ask him he tends to talk over me and doesn’t fully comprehend) is that I often get a weird taste in my mouth. I’ve had actual reflux up to my throat and it’s burnt/stung but those instances are very rare. But this taste…at first I didn’t think anything of it. I also have to take Codeine and Amitriptyline due to pain pain so assumed the cloggy throat and weird taste were a result of the combination (dry mouth + Gaviscon etc).

However, this last week or so has been hell. Seemingly out of nowhere I started losing my voice. It’s not quite hoarse but it was hard to talk…it felt odd rather than it really hurting, if that makes sense. Swallowing lots, needing to spit on occasion and my throat feels 'cloggy'. Also, a bit of a tickly throat/cough that makes my voice go a bit hoarse but I'm trying not to clear my throat or cough if I can help it. I'm drinking as much mineral water as I can but I'm concerned it can dilute the Gaviscon.

I made an appointment to see my gp on Friday and that day I experienced a pretty horrendous panic attack to the extent that my boyfriend had to leave work and come home, and help get me to the doctors.  The GP was sympathetic and checked records to see why the PPI had been reduced. He saw no reason so advised bumping it back up for now. He also recommended Ranitidine to help settle things and gave me the phone number for therapy, which I will call as soon as I am able because my symptoms do worsen the more stressed/worried and anxious I get. I strained my throat so much on Friday with the attack then seeing the doctor that I’ve been virtually mute ever since. Every time I ate it was like there was glass in my throat but thankfully this at least is abating now. I’m finding it hard to juggle all the different medication as well as making changes to my diet and lifestyle though and just do not know where to begin.

I’m pretty convinced it’s LPR and most likely Pepsin so thanks to my wonderful bf I’ve ordered the Peptest in the hope of avoiding more invasive testing procedures because my endoscopy was an awful experience (not the best time to suffer a panic attack...I had to be physically restrained because I tried to yank the pipe out because I felt like I couldn't breathe.) Pathetic, I know. 

I’ve also ordered some digestive enzymes, some ginger capsules and some alkaline booster drops in the hope of settling things down a bit but the worry of all these different things is making it worse because of money troubles. I'm unable to work (and thanks to the DWP and atos have had all that to deal with again) so can ill afford to keep buying all of these things to try. The radical change in diet is costing lots as well because gluten free stuff is so much dearer.

The problem is that I feel I’m stuck in a loop. I felt absolutely wretched on Sunday morning – I was weak, had a racing heart, felt too hot and could barely move. There’s only so much I can cut out of my diet because there are so few things I can tolerate.

Anyhoo these are the diagnostic tests and their results, that I have had thus far:

Ultrasound scan – all was ‘fine’

Endoscopy – “Dysmotile tortuous oesophagus but no obvious reflux oesophagitis and LOS looked tight. [On stomach] Single haem erosion of doubtful significance. Conclusion: Looked to have some dysmotility but reflux well controlled on PPI. No other cause of sxx found”.

Barium meal/x-ray: haven’t been told much about this other than the fact that “nothing significantly abnormal was found”.

So, then, where do I begin? I’ve cut out so much from my diet and I’m terrified of losing any more weight. The dr thinks the Scolisosis has caused the dysmotility and that my spine is squashing my stomach a bit hence needing to eat small meals more often. He and the professor who carried out the endoscopy both feel I’ll need to stay on PPIs for life but I don’t want to. Ideally I’d like to get rid of all of the medication and treat things more holistically. I don’t think any sort of surgery is feasible, either, due to the complexity of it all but also due to my very poor lung function/capacity.

It’s all making me miserable. I don’t see much hope of an improvement and I have absolutely no social life anymore. All I can drink is water and meals are always difficult. Will I ever be able to eat/drink anything nice again or am I always going to have the threat of oesophageall/larangeal issues and cancer hovering over me? 

Thank you for reading if you've gotten this far. It's helpful knowing there are others in a similar boat and any further help or advice would be hugely appreciated. 

NB: I kept a food diary and have resumed it again now - I know there are certain triggers but when I'm anxious then nothing is particularly ok. I've had a little relief from the Ranitidine (first took it on Sunday) but took one last night and still woke with a cloggy throat and bad taste in my mouth. 

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5 Replies

  • Posted

    Hi sorry to hear you are felling so crappy, I have been on esomeprazole 40mg for 8 years in November my GP just cut my dose to 20mg without asking or explaining why, after initial panic have tried to cope of 20mg with ranitidine and sometimes extra esomeprazole. Early January had virul tonsilitis along with pain in centre of chest and a needing to cough as if something was stuck, this then clear middle February to be replaced with a chest infection. Still go chest pains, have had a couple of ECG so not heart, told it was GERD, to cut a long story short went to GP yesterday as still feel chest pains and sometimes struggle to swallow, if I press front of throat feels sore and I constantly feel a lump there. Today started the stupid coughing, I know anxiety makes it worse. GP said to up the esomeprazole to 40mg and go again next week for some tests. Embarrasingly started to cry and said I think I have oesophogeul cancer, she said rubbish as I am not being sick and as I have had an endoscopy in last 10 years doubts I do have it. I am struggling to accept this as if you wait until you are being sick surely it has advanced, is it not better to get things looked at before getting this far. Apparently not as even an emergency scope would not be done for 2 weeks. I must say I am not losing appetite, it is only hard to swallow things like bread and I am not being at all sick just burping a lot which releives pain in chest. I have also today started having excess mucus from down back of nose into throat so this may be what it causing the cough. All this is so horrible I just wish I could feel normal
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  • Posted

    sorry you are suffering. Seems like a lot of us on this forum have similar issues. I've been seeing my consultant with the same problems now for 2 years and he is at a loss what to do.

    The pepsin test will at least clarify if you are refluxing in the throat. My results were off the scale.

    Just as another thought - my friend has to have gluten free diet and I'm sure she said she gets some food via presciption such as breads/cereals etc

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  • Posted

    Had been on Omneprazole for ten years when pharmacy forgot to include in my prescription ordered just before Christmas... Everything was closed and I had a forced 'cold turkey' Christmas which was the most agonizing time of my life. We live in a very rural community so docs and pharmacies take loads of time off at Christmas. Googled Omneprazole and read such awful stories and other bad things I could not believe I had been left on this stuff for solong. I did not have any proven GERD or ulcer problems... just indegestion.

    After the research I tried some other methods.... cut out alcohol, took some suppliments and bought some Gaviscon and ranantadine.... all very short term help... 20 minutes at most before raging agony.

    I then read about Betain and Pepsin and ordered some via Amazon. Thisis stomach acid in a pill... hydrocloric acid and it tastes like it too..... I took one tablet before a chicken meal, (had not eaten meat for 4 weeks!) I was petrified... though I was going to burn a hole straight through my body.... However I ate the chicken and did not have any problems... had a full nights sleep with no indegestion or pain....

    I now manage my indegestion intermitently depending on what I eat. I have changed my diet completely and I am no longer taking any medication....however if I am going to have a high protien or high fat meal I take a Betain.

    Ihave suffered agony in the past four months with this but am very glad I am now weaned off the Omneprazol which can cause no end of other helth problems. It was well worth the suffering to get this far... I can even dig the garden and bend down to weed without getting GERD which I have not been able to do even when on Omneprazol for ten years.

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  • Posted

    Hi Dear, have you ever been tested for Celiac Sprue? It's an autoimmune disorder that's triggered by gluten (the natural protein found in wheat, rye & barley). It's also in many processed foods, lip balm, lipstick, toothpaste... Etc. Left unchecked, leads to many other diseases/disorders such as what you are describing. Drs often try to treat the symptoms ... You must be proactive in this disorder bc a diet change for you means no $$$ for the Dr when he can't prescribe anything for it. Which reminds me... Many meds have gluten in them too.

    I suffered some of the symptoms you described bc it can affect almost every system in your body. Heart palpitations, depression, digestive disorders, infertility, arthritis, brain fog, muscle cramps, chronic hives, GERD... Just some of my symptoms. There are over 300 known symptoms with Celiac Disease. Hard to catch bc it, being an autoimmune disorder can lay dormant in the body until something triggers it. Maybe stress, trauma, surgery or even a virus trigger it to manifest in the body.

    Life now, gluten free ... Unbelievably better! I didn't know what normal felt like. Didn't have a clue MOST of my life! I am smiling REALLY BIG right now. :DDDD

    if your Dr orders the test, don't be tempted to go without gluten until after it's over. Pig-out on it for weeks before. Be proactive. Sometimes the blood test doesn't do well. There's other tests he can order. You may want to change Drs if this one won't listen. I would.

    best wishes!

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  • Posted

    Just wanted to post an update and to thank everyone who has replied thus far, it's really appreciated. I have mostly avoided this site and most others really as it was making my anxiety a lot worse. I had to isolate and shut myself off from it all - been avoiding social media as well as I've just felt so miserable.

    I'm still suffering but I've been following much of the constructive advice that I'd read/been given and have seen glimpses of improvement.

    My Peptest came back positive for post prandial refluxing - so at least I know I've not been imagining it even though the last GP I saw (a locum who knew nothing about my history) dismissed any notion of pepsin escaping from the stomach. He was horrible and patronising but after much beseeching I persuaded him to refer me to an ENT at the very least.

    In the meantime I'm trying to follow Jamie Koufman's Dropping Acid diet and I'm trying to reduce portion sizes but it's so hard as I've never eaten much to begin with and I'm losing weight which is worrying. I'm dangerously underweight now so I'm looking at protein shakes et al (with a high enough pH) but the trouble is I'm still not sure if I have any intolerances to gluten, wheat or dairy which hugely limits what I can eat.

    In terms of the mental health side of things I'm now on a waiting list for CBT and hope that this may help with the anxiety which in turn may help with the reflux. It's going to be some time until I can be seen though.

    As for the PPIs I know I must come off them and have been advised as much by Professor Peter Dettmar who has been more helpful and supportive than any of the doctors I've seen! The problem is I do worry about the dysmotility of my oesophagus as that is something that can't change regardless of my diet. It's all just so frustrating.

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