# Desperate and Without Much Hope



## Vixter27 (Feb 15, 2017)

I'll try to be brief because I know how off-putting it is to see massive messages...

4.5 years ago, was put on omeprazole for two weeks for 'excess stomach acid' by an idiot doctor when I didn't feel well.

A few weeks after I came off them, I felt ill again so was put back on them and told to stay on them.

Year or so later, I go back to docs with lump in throat, cough, etc. Was referred to ENT who diagnosed 'silent reflux'/LPRD

For the next year or two, I control it with meds, sleeping with head raised, etc. All is fine.

April 2017, switched to new birth control and acid went NUTS. Severe and constant reflux for 3 months straight. Nothing helped. Finally worked out it was the meds so stopped taking them and things improved.

Over the rest of the year, stomach problems worsened. Not digesting food, awful stomach ache, loo troubles, etc. New doc diagnosed gastroparesis and gave tips to help.

Saw doctor in early March, who said I shouldn't still be on omeprazole and to stop taking it immediately, as bad for you long-term and should only ever be short-term.

Immediate relief for 3 weeks.

Saw gastroenterologist during those 3 weeks who confirmed it was the correct thing to do and that my reflux should be helped by improving my gut motility, which is very slow now.

Since then, I've been taking natural laxatives, I chew my food carefully, take digestive enzymes, mostly eat smaller meals. I exercise regularly. I don't drink carbonated drinks of any kind as a general rule (they don't agree with me anyway), I don't drink alcohol except VERY rare special occasions. I'm already a coeliac vegetarian. I don't eat late. I avoid taking indigestion remedies because they seem to make things worse. I use liquorice.

Despite all of this, and I'm SURE I must have forgotten something, my voice has been eroded by acid reflux. I have almost no voice right now and it's been like this for almost a week. I don't know what else to do and I'm absolutely terrified that I'm going to develop cancer because of the damage this is causing to me.

If anyone has any suggestions or advice, I would LOVE to hear it.


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## annie7 (Aug 16, 2002)

so sorry you have LPR. i have it, too. it's a miserable condition to live with--constant coughing, acid/pepsin/bile or whatever it is constantly refluxing up my throat causing coughing (bad because i'm a hernia risk) , sore throat, nasal congestion as well as sinus pain and chest pain from aspirating the acid into my nose and lungs. i've now been dx'd with COPD as well. and yes, the constant laryngitis (started in october) to the point where i can barely speak. i always have a very hoarse voice.

like you, my regular doc and my gastro doc told me to take ppis which have not helped and which i am slowly weaning off of.

have you gone back to your ENT to discuss your voice problems with him/her and have him look examine your throat? i believe there are tests they can do to determine if there's been any damage to the throat. have you had an upper endoscopy? that's good that your ENT is familiar with LPR. mine hadn't a clue. he just referred me back to the gastro who keeps pushing ppis. anyway--hopefully your ENT will have some advice for you about your voice, throat and larnyx.

good luck with everything. keep us posted.


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## Vixter27 (Feb 15, 2017)

annie7 said:


> so sorry you have LPR. i have it, too. it's a miserable condition to live with--constant coughing, acid/pepsin/bile or whatever it is constantly refluxing up my throat causing coughing (bad because i'm a hernia risk) , sore throat, nasal congestion as well as sinus pain and chest pain from aspirating the acid into my nose and lungs. i've now been dx'd with COPD as well. and yes, the constant laryngitis (started in october) to the point where i can barely speak. i always have a very hoarse voice.
> 
> like you, my regular doc and my gastro doc told me to take ppis which have not helped and which i am slowly weaning off of.
> 
> ...


Thanks Annie. I'm so sorry you're suffering so badly as well.

The ENT was kind of useful when I saw him, but he made no mention at the time about dietary changes. In fact, it was only after I'd had the acid for a couple of years that anyone told me I ought to be avoiding certain foods and drinks. Unfortunately, there doesn't seem to be a lot of consistency with what makes me ill. Tea is the only constant. Everything else seems to be okay one day and not the next. I'm forever taking things out of my diet, only to find nothing changes so I put it back in, take out something else, find it does improve but then flares up again after a while. It's incredibly frustrating. I've always believed tomatoes could be a problem so I've been avoiding them...but on a number of occasions (once every day for three days while on holiday and once at a wedding) I've had dishes that are very tomato-heavy and felt better than I have in ages! If I have the same dishes at home, they can still upset me. I've taken out garlic, onion, tomato, dairy, caffeine of any kind, citrus, alcohol, most fruit...still the acid continues. Right now I'm trying to eat plant-based foods as much as possible and avoiding anything processed very much. Essentially, the Deliciously Ella diet, I guess. Something has to work.

I haven't had a gastroscopy for this, mainly because I was told initially that it can only be done under sedation, not GA. When I was diagnosed with the coeliac disease, they were happy to do it under a GA but I guess times have changed. I have a SEVERE phobia of sickness and I know full well that sedation simply won't be strong enough to relax me. I know other people with this phobia who've had it under sedation and it simply doesn't work. The anxiety is too strong. Anyway, my gastroenterologist has conceded that if my stomach problems are no better by November, she'll agree to doing the test under GA, although she doesn't think it'll show anything. I beg to differ, at this point. I did have a nasoscopy when I saw the ENT a few years back. Terrifying and actually pretty painful but I coped. It did show inflammation of the larynx at that point. It's soooo much worse now.

The problem for me is that the gastroenterologist believes the only option open to me, realistically, is this nissen fundoplication thing. I have SERIOUS misgivings about it. First of all, the tests you have to have in order for them to go ahead are a total impossibility for me. They put a tube down your throat, into your stomach, WHILE YOU'RE AWAKE and leave it there for 24 hours to test your swallow/stomach function. Then they remove it, again, while you're awake. It's not that I don't want to do it. I would absolutely try if it weren't for the phobia. But I am extremely phobic and I know the anxiety will be too much. I'll be too scared for it to work. Even if I was able to go through with that, there are major risks with the operation, and even if that was a success, someone told me it only lasts 15 years. So...what? I get to do the whole terrifying thing all over again? And is it more of a risk the second time?!?

Sometimes I just think the easiest approach would be to live on a drip. My tastebuds LOVE food, but my stomach clearly doesn't and I can't seem to do a damned thing about it.


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## annie7 (Aug 16, 2002)

really, that's very surprising that your ENT didn't mention diet to you--that's one of the first things all the docs i talked to mentioned and all the articles i've read said the same thing--check your diet.

when i was first dx'd with GERD ten years ago, i took all the acidic food and drink out of my diet and then i was fine--no more GERD--no need for ppis. but all that has changed now with the LPR. i still follow a very strict diet but now everything bothers me ---all food and even water. i'll eat or drink water and then i get all the acid in my mouth and the acid/pepsin starts refluxing up my throat and i'll start that horrid coughing, voice gets even more hoarse etc. it's miserable. and oh yes! i agree with you about living on a drip---that's been my thought, too! exactly!

oh dear--no way would i want to have an invasive test like a gastroscopy done under sedation. it has to be GA for me. that's how my endoscopy was done. like you said, sedation would never be enough to relax me. and yes, those nasoscopies are no fun at all.

i don't want a Nissen Fundoplication, either. you're right--there are major risks for that operation, they are not always successful, there can be all kinds of problems afterwards, they can slip, and yes, they have to be done over again after 15 years. and i agree with you about the tests that you have to do beforehand to get it--that 24 hour PH test (and the manometry, etc) where they stick that tube up your nose and into your stomach. no way could i handle that. i have a very strong gag reflex. and no way could i tolerate having that tube down me for 24 hours and try to eat with it in there. i've had to have NG tubes shoved up my nose during my hospital stays and the first time they practically had to hold me down to do it. i started screaming and they finally had to stop and do it later. NG tubes are a miserable experience and they don't get any easier the more they are done. so, yes, like you--- i can't go through all these horribly invasive tests..

another problem with the nissen for me--i have a lot of adhesions in my abdomen due to three open abdominal surgeries and my gastro didn't think more surgery around that area would be a good idea since i've had to have two lysis of adhesion surgeries already.


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## Mibls (Jul 1, 2018)

Hi, sorry to hear your ongoing troubles. May be a long shot as I don't know if it fully fits your symptoms but worth a check particularly if you had ulcers at all and no h-pylori - did you get tested for gastrinoma ?


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