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GERD - experiences?

(83 Posts)
Badvoc Mon 22-Oct-12 08:21:55

Hi
I have suffered with GERD since I was pg with my ds2 who has just turned 4...so about 5 years or so.
It's awful sad
I have been on omeprazole and am currently on lansoprazole (30mg) per day.
I also drink gaviscon before bed.
I had an endoscopy just over 2 years ago and it was normal according to hospital.
I have also been tested for heliobacter pylori and was negative.
So, I guess my question is twofold...
Is there anything else that can be done gp/ medication wise?
And should I be worried about still having GERD after 5 years?
Had a really bad time last week...I think I may have had gastritis actually, and my throat is raw sad
I have decided to go GF and cf to see if that helps but I do find it hard.

twolittlebundles Mon 22-Oct-12 08:43:25

I have GERD- had everything from minor reflux through to awful GERD since I was a teenager. Things that have helped me are:

diet:
dairy free, gluten free, low acid and low fat diet. Its a pain to do, but the results are great. I also take probiotics every day (just from pharmacy) and notice a difference if I stop.
If I know I am going to eat something that will make it flare up, I take some slippery elm. It isn't great tasting but again, helps a lot and keeps the rawness at bay.

If I can, I walk a little after a big meal (tbh, I do this about 20% of the time, but it helps when I do it).

I was also told by my gastro specialist to raise the head of the bed (its on two bricks), which helps a bit too. Low stress is meant to help but I do not have a low stress life!

I had a full endoscopy and colonoscopy a few months ago and was diagnosed with Barrett's oesophagus, caused by long term GERD. It sucks.

Telesales650 Mon 22-Oct-12 08:52:24

I have also had this for about ten years and can cope with it quite well but it has caused a side effect of causing a irritating cough which is worse at night!

Badvoc Mon 22-Oct-12 10:26:30

Yes, I have had a cough for about 2 weeks now which I am sure is reflux related.
Two....that's one of my fears I guess...developing barrats oesophagus sad

cheekydevil Mon 22-Oct-12 13:20:34

I have had this for about 20 years or so and can say that twolittle's advice is bang on especially low fat bit as the stomach produces extra acid to deal with fat.
I would check with your GP though that you are ok to take gaviscon with lansoprazole as I was told not to.
There is an operation you can have to repair the hernia if you have one but your med is ok long term and during pregnancy according to my GP.
Also avoid clothing that is restrictive around stomach area.

Badvoc Mon 22-Oct-12 13:21:53

20 years?
Poor you sad
I am happy to keep taking the lansoprazole but just wondered if I will be on it for the rest of my life? sad

cheekydevil Mon 22-Oct-12 13:27:04

Oh, forgot to mention alcohol also aggrevates GERDs.
It sucks but other than diet and lifestyle changes or the op then meds it has to be.

twolittlebundles Mon 22-Oct-12 19:14:39

tbh, the Barretts was a big surprise- and I spent a few weeks terrified of the possibilities, but I am now trying to take the diet changes a bit more seriously.

Badvoc, I have no idea- I know that the gastro told me not to expect it to go away unless I have an op. Wasn't impressed with that one!

Badvoc Mon 22-Oct-12 19:15:42

Don't drink or smokesad
The op sounds pretty major and I want to avoid it if I can.
Also I have heard it doesn't always work?
I have a gallstone too...could that be connected?
I wouldn't mind having my gallbladder out...
Am very fed up sad
Will go back to gp this week...

LadyStark Mon 22-Oct-12 19:32:19

I take metaclopramide in addition to omeprazole which makes a difference to me - although I am sick with my reflux, I know not everyone is.

In terms of little things that help, full fat coca cola seems to help settle my stomach or anything very plain and low fat, rice cakes are good. Alcohol doesn't tend to make me worse but fatty food definitely does, it's hard trying to avoid it all the time - especially as I do a job that means I eat out 3-5 times a week!

Badvoc Mon 22-Oct-12 19:36:37

Yes to cola! I discovered that when pg with ds2 smile
But otoh I know carbonated drinks aren't good...
I eat rice cakes, and fairly bland food anyway..potatoes, veg, soup etc.
Will cut out the chocolate.
Am drinking fruit tea ATM instead of coffee/tea with milk.
I do eat a lot of eggs but they are pretty good for you afaik.
Don't eat fried food, crisps etc
Am just getting desperate now sad

madhairday Mon 22-Oct-12 19:42:45

I've also had GERD for years, related to a lung condition I have.

It does indeed suck. The pain can be absolutely agonising and sometimes downright scary.

I'm booked in for an endoscopy soon, currently on omeprazole twice daily.

What I have found helps is no red wine (boo) and spicy food is also out. I also find if I eat too much it flares up, so try to eat smaller portions. If I eat too many carbs it is worse too. Dairy seems ok for me, but I'm not sure. I'm keeping a food diary to see when it is at its worst. Chocolate does make it worse too. It's pants. Pah.

Somebody recommended eating an apple during a flare up, apparently it calms the acid down. It doesn't work for me but might for you.

Hope you can find something that helps.

ThatVikRinA22 Mon 22-Oct-12 19:45:10

i have LPR - all my valves are knackered. i take omeprazole and ranatidene (sp?) daily and i will have to take them for ever.....i think i had symptoms of GERD around 15 years ago but it was left unchecked until about 4 years ago.

its sucks.

Have you tried raising your bed head?

twolittlebundles Mon 22-Oct-12 19:48:24

have you had an allergy test? Might be worth getting a full test for foods you have intolerance or allergy too- it can be surprising. My allergist found I am allergic to potatoes sad (nearly cried); but cutting them out helped a lot with the reflux.
If dairy is an issue, then ANY dairy at all (even hidden in baking etc) will set it off.

Badvoc Mon 22-Oct-12 20:05:34

Well, my health isnt great tbh.
I was dx with me/Cfs in 1997 and have flare ups occasionally - I guess that's another worry - and earlier this year I was badly anaemic (8) due to long standing gynae issues.
I had a coil fitted in may but tbh it's not really helped...I still seem to bleed a lot.
I also have a herniated disc in my back which happened last summer. I had a proceedure to help in may too but it hasn't worked.
My mum is coeliac and I am pretty sure I am too but all the NHS test say no. There is a more sensitive one but can't afford to get it done privately.
My thyroid is also borderline low but has been for years...I am - just - above the normal range.
I am at home with the kids as its half term here and I have actually been scared today at how ill I felt sad
I look dreadful too...
Wwyd?
I dont think I can take yet another gp a lot where I come clutching a blood test form only for the tests to come back "all ok" and leave me no better off and feeling like a hypochondriac sad

Badvoc Mon 22-Oct-12 20:06:09

Yes I do find apples help smile

LadyStark Mon 22-Oct-12 20:18:30

Weirdly, carbonated drinks generally aren't good for me but full fat coke seems to be the exception!

It is grim, I am also anaemic quite regularly and generally feel run down and ill quite a lot. It sucks.

cheekydevil Mon 22-Oct-12 20:43:23

I find eggs the worst thing to eat and definately no citrus

Badvoc Tue 23-Oct-12 08:13:59

Yes, I don't do citrus.
Have stopped eating onions, spicy things, coffee, tea, milk etc.
Have really cut down in carbs too and haven't eaten bread for weeks.
I eat lots of bland stuff...eggs, potatoes, veg, if I eat cake and biscs they are plain (lots of birthdays recently!)
I ate apples, strawberries, nectarines fruit wise.

trigger2 Tue 23-Oct-12 08:26:05

Twolittlebundles - I am interested in what sort of thing you eat on your diet. I've gone lactose free which doesnt make much difference, I've had a negative blood test for coeliac, but haven't tried gluten free yet as I'm hoping that my GP will take pity on me and refer me for an endoscopy/biopsy. It's a big hope I have to say as I haven't found them that helpful.
Regards

twolittlebundles Tue 23-Oct-12 08:50:26

Hey trigger2, happy to share. Here is my list of things that work for me:

Fruit and veg:
Mango, Peaches, Nectarines, Apricots, Avocados, Sugar snap peas, Carrots, Zucchini, Asparagus, Spinach, Mushrooms, Kumara (sweet potato), Acid free tomatoes, Pumpkin, Beetroot, Berries, Nuts and seeds

Protein:
Fish, Prawns, Beef, Lamb, Chicken, Chickpeas (small amounts), Egg (small amounts)

Carbs:
Gluten free bread; Gluten free pasta, Rice, Quinoa, Gluten free and dairy free cakes (quite a lot of these!)

Dairy needs to be out of your system for 2 weeks totally for it to really be effective IME.

Out of interest, when you had your blood test, were you eating a lot of gluten before the bloods were taken? In order for the test to be accurate, you need to have been having a med-high gluten intake, otherwise the antibodies won't be in your blood to show up. My first test was negative at the dr, but when the gastro ordered the test again, I was told to eat a fair amount of gluten in the lead up and it showed significant intolerance.

I have had what feels like every test available, and they haven't actually been that useful- aside from the diagnosis of gluten intolerance, they have found Barretts and given almost no advice/assistance, basically because there isn't actually a lot that can be done I think.

Sorry for essay!

trigger2 Tue 23-Oct-12 16:55:26

Wow, that's great thank you for that. Interesting to see you dont have apples there. I used to eat loads of them but now find they really disagree with me so i only have one occasionally.

I've been lactose free for 2 weeks and havent noticed a great difference in terms of stomach pain, bloating, gas etc. I have done spells of lactose free over the last few years which helped much more. Strange

Before the blood test I ate normally. I've heard some people say you need to eat the equivalent of 6 slices of bread per day, where I had say 2. But i regularly eat pasta, noodles & other carbs.

I've found my gp really unhelpful. I'm convinced there's something else going on, like coeliac. I've tried to keep a food diary but didnt see anything obvious from that. I'm back to gp next week and I hate being difficult but I really feel I'm being fobbed off.

Thanks again

twolittlebundles Tue 23-Oct-12 19:12:16

apples only work for me if they are cooked for some reason- I have no idea why!

Is it possible to see a different gp? My old gp was not very interested, so I moved and the new one immediately referred me to a specialist.

Have you looked at IBS?

trigger2 Tue 23-Oct-12 19:31:05

Yeah I'll see what my regular gp says next week. She's suggested IBS to me but my family has history of allergies, intolerance & coeliac, so I'd put money on it being one of them. I just dont know which !

PackItInNow Wed 24-Oct-12 19:29:08

I've heard that an apple a day is a natural remedy for GERD. I also hear that the natural pectin in the apple is something to do with it?

Read it online, but can't remember where. It implied that half an apple after a meal will help to ease acid reflux. It also said something about dipping apple segments in honey or black strap molasses because of the potassium content helps lessen stomach acid and also lessens the reflux.

Am trying to remember where I saw it, but that was what I remember it saying.

The thing is, before I came across the article, I found I didn't need as many Lanzoprazole per week if I ate apple, banana and honey for dessert once a day. I went through a phase of eating it every day and after 18 days, I realised I hadn't taken my Lazoprazole for all that time. I now eat an apple most days and have only taken about 3 or 4 in the last 2 months.

I find that if I don't take an apple/honey/banana or all 3 for roughly 5-6 days, then the reflux comes back, although not as bad.

BestIsWest Wed 24-Oct-12 20:03:16

I have it and mine is caused by Calcium/parathyroid/vitamin D problems.

ThatVikRinA22 Thu 25-Oct-12 16:25:02

i am currently coughing and my wind pipe feels raw - i get bad every single time i get a cold.

i have never had any investigations though and im terrified of having the camera down the throat, i had a permanent cough but the omeprazole/ ranitidine combo sorted it (unless i get a cold) so i left it at that.

i am terrified i may have barretts esophagus. my symptoms were left unchecked for so many years before anyone realised what it was.

would you go back for checks? im not terribly good with the diet.

Badvoc Thu 25-Oct-12 18:11:59

Vicar - I put off having the camera down for years. I was petrified. I can tell you it was fine! I had the sedation and can't remember a thing..not even a sore throat after. Do it. I deeply regret putting it off so long and if I needed another would have one tomorrow x

ThatVikRinA22 Thu 25-Oct-12 18:53:32

do you have to come off the meds though before having it done? i hate the coughing and the pain when im not on the meds. as well as being a wuss

twolittlebundles Thu 25-Oct-12 19:23:29

Vicar, I have confirmed Barretts, and it is a relief to actually know and have the diagnosis. Because of the diagnosis, I am now on a 2 yearly screening programme to keep a close eye on things.

I find it less worrying knowing the situation and knowing that if it develops into the dreaded C, I will at least know as early as possible and therefore up my (admittedly terrifying) chances.

I only had to stop all meds 24 hours in advance of the surgery.

ThatVikRinA22 Thu 25-Oct-12 19:38:00

right, i will go to the gp on my next set of days off. i must do it - last time i had a cough my wind pipe kept spasming and i couldnt breath - kept whooping while a very worried DH looked as if he was ready to dial 999.....

i put it off for such a long time and for a while the meds were working, but when ever i get a cold the meds just dont work.

i used to wake up choking 15 years ago. ive had it a long long time.

twolittlebundles Thu 25-Oct-12 19:53:51

Hopefully you get some good information Vicar.

For the breathing issues, you obviously need to get some gp advice, but I found (on a whooping cough website of all places) a suggestion that you try holding your breath for a few moments if you're having a coughing fit. It helped to reduce the panic as well as the fit.

Good luck!

ThatVikRinA22 Thu 25-Oct-12 20:04:38

thank you - for a while i actually wondered if i had whooping cough before i realised what it was. It happens every time i get a cold now, no idea why but the meds dont work when i have a cold....before i got the meds it was happening all the time - the cough was permanent and the spasms began to affect my ability to drive etc.

i am just so scared, first of the procedure itself (i have a strong gag reflex and am scared of being sick) but i have a horrible feeling that i may have been left with it long enough without it being treated for barretts.

you are right. knowing would be better. and i cant keep on like this - i live in dread of getting a cold.

twolittlebundles Thu 25-Oct-12 20:35:37

I have a VERY major gag reflex (wonder if it is related?!), and was scared to being ill too. AFAIK you can have the procedure with sedation or full general anaesthetic. I went with a general, partly because it is out of your system faster (I am breastfeeding still) and partly because of my fear of the tube going in. I think I coped better because I knew I would be totally out.

Mine went undiagnosed for 30+ years, and I only have a small section of damage.

ThatVikRinA22 Thu 25-Oct-12 20:43:17

thank you two that really has helped me - if i could have a general id have it done, no problem. i think i first started to get really pronounced symptoms 15 years ago - i remember DD was still in a crib in my room, she is 15 now.

the symptoms have steadily got worse over time.

I just dont really know what to say to the gp. but i need to go.

i dont think i help myself with diet etc which i should pay more heed to.

I wonder if the gag thing is related - i went to the dentist yesterday for a scale and polish and she got me....it does feel like i have a permanent lump in my throat.

thank you for your help. im going to brace myself and go see the gp,

twolittlebundles Thu 25-Oct-12 21:50:15

Glad to have been useful Vicar - I am not always as good with my diet as I could be either- drives DP nuts as I then complain about being uncomfortable and sore, and he worries about the Barretts.

The surgeon made a point of telling me that it is not a death sentence at all- only a very small percentage of people with Barretts end up with the big C, so I try and remind myself of that when I start feeling the panic. With the post-diagnosis screening I am in a better position than I was before.

I think you just explain to the GP everything you have said here, and ask to be referred. If the GP doesn't listen, it's time for a new GP. You need to get it checked, even just to put your mind at ease. It's so often worse thinking about it than actually doing it - andif you're anything like me, I can imagine how many hours you have spent thinking and worrying about it vs. how long it will actually take...

You have reminded me about how long it has been since I saw the dentist!! shock

Badvoc Fri 26-Oct-12 07:17:25

I get that when I have a cough/cold too vicar and its not nice.
I would ask for a GA if that would help you...personally I am glad I had the sedation as I didn't remember anything and was grinding tea and eating custard creams 10 mins after!!
I didn't stop taking my meds btw.
Good luck
X

Badvoc Fri 26-Oct-12 07:18:32

Grinding tea?
Drinking tea....too early! smile

gingeroots Fri 26-Oct-12 08:45:10

Regarding the spasms I wonder if it's this
voicedoctor.net/therapy/laryngospasm
there's a short video clip with the noise ,which if you get it ( as I and others in my family do ) you'll recognise .

We have no history of surgery and with my mum coughing and missing her ranatadine make her prone to attacks .

The site recommends this
^When one has an episode of laryngospasm, one can reverse this usual trend and take most of your time to breathe in slowly and then a quick breath out can be followed by another slow breath in. This can be repeated until the spasm stops.

Sniffing creates a reflex opening of the vocal cords. While it can be difficult to sniff aggressively during a spasm, it is often possible to breathe in through the nose, slowly and the combination of slow air movement and utilizing the nose opens the vocal cords enough to get additional air into the lungs.

An observation was made by a person with the condition that if they tilted their head backwards during an episode, it made the slow breathing-in
easier^

Would be really interested to hear if this is what vicar and others get .
It's very scary .

cheekydevil Fri 26-Oct-12 09:48:33

Whatever you do do not let them talk you into having the endo with no sedation. They told me it would be better for me and it was horrendous! I gagged so much they actually tore the lining of my throat with the camera.
I don't know why I let people talk me into doing procedures without anathestic. Pretty sure they didn't get a proper look anyway with me in so much distress so will probably have to have another. sad

ThatVikRinA22 Fri 26-Oct-12 18:11:24

yep - the clip is only short but thats the "whooping" noise i end up making - usually by that time im on the floor, eyes streaming, while everyone stares....

i can still cough out, but cant breathe in. its like breathing in treacle. i get it so often now when i have a cold that i know its coming and i dread those attacks, its horrible. its like i get a sudden stinging in the back of my throat, then a cough that wont stop, and the whooping to try and breath back in again.....it lasts for several minutes. i dread having one in the car while driving.

im going to go to the gp next week. i must do something about it. i will insist that if i have to have an endo i want to be put out - not just sedated, but GA.

gingeroots Fri 26-Oct-12 19:42:08

I wonder if it is the same - mine feels like a barrier across my windpipe ,but I don't think it goes on for several minutes .

Apart from the advice above which seems to be about trying to breathe slowly ,slightly tilting your head back and aggresive sniffing I've also seen sipping warm water suggested .
Mine comes on too suddenly for that but maybe if you knew yours was starting you could try that ???

But definitely go to GP .

ThatVikRinA22 Fri 26-Oct-12 22:23:27

i do need to go to gp....maybe ill take this thread with me....

voice has gone completely tonight,
its so weird how i suddenly get these flare ups but can be fine for months....im barking rather than coughing. i sound like a seal.

so fed up of it.
and even with a endo, i cant see what he answer is unless i go for surgery....

gingeroots Sat 27-Oct-12 10:54:58

Sounds awful .
Have you tried steam ? Head draped in towel over bowl of hot water .
Can be soothing .

Other thing that occurs to me is stress ....I know when I'm stressed I get the lump in throat/constriction thing and can barely get evening meal down ,sometimes can't .

Low dose of anti -d helps ,tho was also offered beta blockers .

Seriouslysleepdeprived Sat 27-Oct-12 20:55:35

Haven't read the whole thread but I had horrendous GERD for 10 years with oesophagitis & episodes of gastritis. It got so bad at one point I could not longer swallow properly & had inadvertently moved to a soft diet.

I have since been diagnosed with coeliac disease & GERD has gone since cutting out gluten completely. I didn't even really get indigestion in pregnancy.

ThatVikRinA22 Sat 27-Oct-12 22:19:11

voice gone completely now. work pissed off with me and simply ignoring the fact that i cannot speak....they are pissed off with my sickness record and are steadfastly refusing to send me home.

will phone gp asap on monday. i cant go on like this. i think my vocal chords are knackered (temporarily hopefully?) its taking super human effort to make any noise at all and im still hacking and coughing like a seal....

twolittlebundles Sun 28-Oct-12 06:54:46

Vicar, it sounds as though you are having an incredibly rough time- I hope you get some useful answers from the GP tomorrow.

ThatVikRinA22 Sun 28-Oct-12 12:35:50

thank you, im going to phone in the morning - having to sleep propped up and then not managing that very well.

going to just go and ask for the endo and see what happens. thanks all - this thread has given me the push i need. ill let you know what gp says.

ThatVikRinA22 Mon 29-Oct-12 12:15:01

right. i did it. i went to doctor this morning.
i do have a chest infection, but i always get one with a flare up. So im an Anti biotics for that, but the gp was lovely and listened - he is sending me for an endoscopy and a camera up my nose to view my vocal chords too.

the only thing is, that apparently if there is damage to the vocal chords there is nothing can be done, and he says that any cold will trigger the inflammation sad so im desperately worried that this going to happen whenever i catch a common cold and will just have to live with it.

i have had to use annual leave because my colleagues are being a bit bastardy about me having time off....already had 2 days off last week and came back to snide comments....they steadfastly ignored the fact that i was coughing up a lung last night and im worried that this is now the shape of things to come.

i have stressed to the gp that i need to be under for this to happen - the one up the nose i can live with the but the endo - i want it with a GA. They will try and talk me into having sedation only i know they will.....if i stick to my guns and say im not having it any other way do you think they will do it under a GA?

Badvoc Mon 29-Oct-12 12:26:40

Vicar...Bear in mind a ga is more dangerous and you will be in hospital longer to recover. You may even have to stay in overnight depending in when you go down to theatre.
I had the sedation and - honestly - dont remember a thing. It was great smile
They can't force you to have sedation but they may be reluctant to use ga due to the risks.
Glad you have been to gp. Sorry to hear about the vocal chords...that's rubbish.
Sorry your co workers a re being shitheads too...that's all you need.
You are obv ill and frankly if you are on ABs for a chest infection should be a home!!!

ThatVikRinA22 Mon 29-Oct-12 12:42:44

thanks badvoc,

i just dont think i can have it without being under - i know its sounds nuts (i had babies without pain relief and at home!) and yet the entire thought of this just makes me want to cry - i will panic. its the thought of the endo that has stopped me seeking help for 20 years....i know how daft it sounds.

i have had a GA before and was fine afterwards - went home same day following surgery....

i know its ridiculous.

the sedation - how sedated are you? if you are still aware of whats happening then i cant....

the only way i feel i can have this done is via a GA...

Badvoc Mon 29-Oct-12 13:30:17

It doesn't sound nuts to me,vicar. Not at all.
I put it off for years, and like you had two babies without pain relief. It's not about pain though, is it? sad
They put a cannula in my arm...sorry dont know what drug it was exactly...and even then...lying on the table I nearly sat back up and walked out.
That's how terrified I was.
But they put a guard in your mouth - which for me was the worst bit actually! - and then injected me and the next thing I knew it was over and they were wiping my mouth and chin....I got a it ahem...dribbly smile
That was it.
Took me to the ward where I had a cup of tea and a custard cream smile
Not even a sore throat afterwards.
Could you try and go for the sedation and if its not right or you go for the ga??
At the end of day you know your own body...you can insist on a ga and if they dont affect you adversely then that may be your best bet.

gingeroots Mon 29-Oct-12 15:24:56

I had sedation for some dental work and can only remember discussing my shoes and then nothing until I woke up .
Bliss .
And I wasn't even that wobbly or drowsy to go home ( on bus with friend ) .

ThatVikRinA22 Mon 29-Oct-12 16:27:47

oh kay......sedation is sounding slightly better......

ive got around 4 - 6 weeks to wait to see someone. i am trying desperately to stop worrying about it and put it out of my head until i get the letter.....

Badvoc Mon 29-Oct-12 17:26:09

Thing is...if you don't try you know.
You could even ask for slightly more sedation than normal? They would rather so that than give you a ga....
I liked the sedation because I got to go home really quickly and it doesn't linger in your system the way a ga does.
I hope you feel better soon x

alwaysme Mon 29-Oct-12 18:03:37

Vicar, I'd take sedation over a GA anytime. I've tried both twice over the last 2 years, sedation wins hands down.

Had dental implants and 4 stones removed from the bile duct by sedation. Knew nothing about it and felt fine afterwards. GA felt sick and awful for days.

Oh and the guard thing in your mouth, is just a little short tube that you bite on. Don't do what I did and take it out just as they administered the sedation. Caused panic amongst the medical staff, apparently they can't open your mouth sometimes once you are out. Opps grin

alwaysme Mon 29-Oct-12 18:19:30

Badvoc, the guard thing being the worst bit for you, I can so relate. I mean it was just a bit of plastic tube but I was such a nervous wreck, it kind of finished me off. Promptly burst into tears and took it out, felt such an idiot after!!

ThatVikRinA22 Mon 29-Oct-12 19:36:36

right, i will steel myself for the guard......

thank you guys, i may need your support as it gets closer to the day i need to go and get it done.

Badvoc Mon 29-Oct-12 19:44:45

I did take mine out!
And said...
"Where is the sedation?!"
smile
Was a nervous wreck! I still don't know how I managed to walk into the room my legs were shaking so badly!
Bear in mind vicar they have seen it all before.

noddyholder Mon 29-Oct-12 19:59:30

I have this Be careful with lansoprazole it stopped me absorbing vitamins after 3 years continual use and I now need jabs! I have been left with a permanent numb foot caused by b12 deficiency. Mine is terrible atm and the worse it gets my heart gets affected and speeds up. I have just cut out wheat again and not eating after 7pm which has worked for me. The sedation was great I came too and had no memory at all (rohypnol) so much so that I assumed it hadn't been done.Good luck it is really miserable

rainbowinthesky Mon 29-Oct-12 20:15:14

Dd is 9 and has had gerd since birth but only diagnosed earlier this year so consequently has chronic oesophogitis and focal dysplasia. She thought reflux was normal. She lost her front teeth when she was 2 and we were told it was due to breast milk but found out when she was diagnosed it was due to the acid.
She is on PPIs and sees a gastro every couple of months. She was diagnosed by camera down the throat and biopsy.
She also gets a lot of IBS and her reflux isn't controlled sufficiently by the tablets if she gets worried - unfortunately she has a lot of anxiety so may get a referal to CAHMS if we can't get it under control.
She will have it her whole life.
Try not to read about Barrets.
She has to avoid eating out, deep fried foods, fizzy drinks, sweets, lots of cheese, citrus food.
When it's bad she gets awful headaches and night sweats.

Oh Rainbow your poor DD that's awful for a child to cope with. DD2 has a degree of hypermobility and apparently that can cause acid reflux as muscles that should keep the stomach "closed" are too weak to do their job. But nothing like your DD is suffering sad

Interested to see this thread as I've been told I have GERD/gastritis and have been on lansoprazole for 15 months without success. I was prescribed it as I could feel something moving in my stomach and had a pain like a stitch in my ribs, was waking up in night to poo and had trouble passing urine. My GP said oh yes this is indigestion which is why you are getting a lot of acid, and I said no I am not getting acid and she said oh yes you are ...!!

Before this, although I'd had ulcers some 15 years previously, I rarely had indigestion or "acid" but since I've been on lansoprazole I've developed a rasping pain in my trachea when I make any sudden movement and had about half a dozen episodes of acid beyond all acid - literally comes into my throat like smoke - very odd - but only these few instances, you all seem to have symptoms pretty much all the time, affected by different foods. I don't seem to have any of the symptoms you are all describing, it sounds awful.

So I think the lansoprazole is causing over-production of acid. And 15 months on I have the same "feeling" in my stomach/ribs. I've had endoscopy, colonoscopy, bone scan and blood tests, seen two gastroenterologists and a rheumatologist, no luck. My other symptoms are dry flushing - not menopausal hot flush - but literally looks like someone has stamped blocks of purple on my face, neck, chest and breasts and awful aching in the armpits and sometimes all down my arms.

So I don't think its GERD, but its the GPs' favourite idea!

ThatVikRinA22 Tue 30-Oct-12 10:55:39

i had no idea kiddies could suffer - thats terrible rainbow

burning - i thought lanzoprazole was a proton pump inhibitor - that actually stops acid production? cant see how the lanzoprozole could be making more - do you take any anti inflammatory meds like ibuprofen? gp told me yesterday that they stimulate acid production - he was saying to me that i at the onset of a cold i could try it to prevent inflammation of the vocal chords but he said it may back fire due to it causing excess acid!

catch 22!

rainbowinthesky Tue 30-Oct-12 11:18:16

Lanzaprozole is a PPI. It doesn't stop reflux just neutralises the acid.

rainbowinthesky Tue 30-Oct-12 11:19:17

Lanzoprazole

noddyholder Tue 30-Oct-12 12:14:12

It does stop acid production. I have been involved in a lot of research of PPIs as many transplant patients need them for life. They are very wary of them in teh states after several law suits re side effects esp neurological.

ThatVikRinA22 Tue 30-Oct-12 12:22:25

what sort of neurological side effects please noddy? i will be on them for life i think unless i have an operation - ive never noticed any ill effects at all but would be interested in knowing what these effects are meant to be.

noddyholder Tue 30-Oct-12 12:40:13

They block hydrochloric acid and this is essential for absorbing b12. I had extreme fatige numbness and tingling in my hands and feet. One of my toes it is permanent now as I was on them 4 years before my b12 was tested and I was sooooooo deficient they were surprised i was still standing!My mouth was very sore too

ThatVikRinA22 Tue 30-Oct-12 12:55:11

i had no idea. i dont think i have ever had my B12 levels tested either and ive been on them for about 6 years.

what sort of dose were you on noddy?

im on omeprazole 20mg twice daily - having said that i dont always take the 2 doses....no one has ever mentioned any side effects to me.

noddyholder Tue 30-Oct-12 13:00:48

I was on 30mg lansoprazole. I have now stopped them and am trying alternatives as I then found out that the b12 jabs are less efficient too as the b12 needs folate to work and PPIs block that too. They have been campaigning in the US to get a black box warning on them to make people aware. My symptoms were awful but gradual docs thought I had MS

ThatVikRinA22 Tue 30-Oct-12 13:29:22

what does a lack of B12 do?

not that it makes any difference as i need the PPI more than i need the B12 i reckon.....the perma cough would make daily life impossible.

rainbowinthesky Tue 30-Oct-12 13:49:05

Noddyholder - dd has been on 15mg of lansoprazole since April and will be on it till at least next April when she is due another endoscopy to see if she has healed. When she gets stressed she gets a sore throat and painful reflux so I am not holding out much hope that she will be ready to come off the tablets.
What questions shoudl I be asking at our next appointment in December?
I have already been told she will be on and off them her whole life.
I am going out so not being rude in not responding till later.

noddyholder Tue 30-Oct-12 14:05:12

B12 deficiency is serious the nervous system can get destroyed and it feels a bit like MS. You can go on and off them. It is long term use that you need to address. You need a certain amount of acid to absorb nutrients.

noddyholder Tue 30-Oct-12 14:06:26
mawbroon Tue 30-Oct-12 14:13:11

I haven't read the whole tgread, but I wanted to link to this thread where I posted at length about ds1.

He started complaining about reflux symptoms when he was 5 and the docs were at a bit of a loss about it. Since we had his tongue tie revised, the reflux has stopped.

Rainbow, I wanted to ask about the decay on your dds teeth. Does she have a lip tie? (possibly a gap between the front teeth, but not always) With some lip ties, milk (breast or formula) and food sometimes get caught up in little pockets formed by the tie and it rots the front of the teeth. some examples in this doc

I'm not by any means saying that all reflux is caused by tongue tie, but it is certainly something for sufferers to consider IMO.

rainbowinthesky Tue 30-Oct-12 17:13:36

Thanks noddy. I'll ask about that next time. Mawbroon, the teeth rotting was from behind the teeth which is why it wasn't spotted till we went to a specialist. Our normal dentist thought it was grinding and didn't see the rot. The specialist thought the rot was caused by bm. She is now on a high fluoride toothpaste and has minimal damage to the back of the front teeth.
Her reflux is caused by the flap in her oesophogus not working properly. I do wonder if she is hyper mobile slightly as she can bend her body parts in extreme ways and has developmental flat feet which means she sometimes has to wear a wedge and we are very very limited to buying shoes.

noddyholder Tue 30-Oct-12 17:14:29

Reflux definitely affects teeth Acid erosion

rainbowinthesky Tue 30-Oct-12 17:21:50

At the time dd was going to a very posh Montessori nursery and her front top and bottom teeth just wore down to little pegs before we went privately. We never heard row noticed her grinding so found it hard to believe that was the cause. I am sure we were heavily judged by staff and parents as it looked so awful. I cried buckets when I was told it was the breast milk yet ds was fed longer and his teeth were fine. Finally vindication albeit 7 years late.

noddyholder Tue 30-Oct-12 17:37:56

God thats awful sad

ThatVikRinA22 Sun 04-Nov-12 17:28:24

hi all - its me again - just wondered if anyone else has a feeling like something is in their throat?

i finish the ABs tomorrow - voice still gone, constant throat clearing and feels like ive got a lump in my throat

waiting for the cameras - should be within 4 - 6 weeks.

Hi Vicar, how are you? My GP put me on lanzoprasole even though I had no acid symptoms, and within weeks I developed the worst acid I'd ever had. I sometimes choke on food and feel as if there is a lump in my throat just above collarbone. I do hope you get some answers, I've been told to stay on lanso indefinitely, I had the scope and they said it was inconclusive but GP and consultant refused to do another one.

Rainbow my DD is slightly hyper mobile and she has problems with acid as well but nothing like what your poor DD has been through, I hope it can be resolved or controlled.

rightsaidthread Thu 09-May-13 20:47:21

Can I resurrect this thread?
I've just been given treatment for GERD and feeling pretty miserable with the symptoms

Can anyone give more info regarding dietary changes. Interestingly the symptoms have become worse since I have lost 2 stone sad

rightsaidthread Fri 10-May-13 12:07:49

Hopeful bump

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