GERD - experiences?

[Badvoc]

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 :(
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 :(
I have decided to go GF and cf to see if that helps but I do find it hard.

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? :(
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 :)
That was it.
Took me to the ward where I had a cup of tea and a custard cream :)
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.

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 ) .

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.....

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

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

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!!

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.

I did take mine out!
And said...
"Where is the sedation?!"
:)
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.

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

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

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!

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!

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

Lanzoprazole

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.

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.

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

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.

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

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.

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.

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.

here

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.

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.