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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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