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Can’t cope anymore with Reflux/stomach/throat issues

35 replies

recrem123 · 01/06/2024 20:55

Hi all,

This is my first time posting so please be kind. I wondered if anyone had anything similar and could offer advice. I am 32 and had my first baby (DS) 10 months ago, I had awful acid reflux in the third trimester which I managed to battle through mostly without taking anything and then occasionally took rennies (I found gaviscon didn’t do much). The acid reflux went away initially after birth and then reappeared about 5 weeks postpartum and hasn’t really left since (apart from when on PPI’s). In hindsight I think I may have suffered with acid reflux a little on and off before pregnancy as I used to get sore throats when I otherwise felt well in myself and couldn’t figure out why.

The symptoms have got so much worse over time since giving birth and I am utterly utterly miserable with it and in pain. I just want to cry every single day. I’ve been to the doctors a few times and was initially told take omeprazole for a few months and hopefully it will reset your body as it’s probably from pregnancy and a weakened sphincter from everything moving around in pregnancy and putting pressure on the sphincter. Did this,
and after my 2 month course the symptoms came back within a day or two of stopping the meds. Went to see a doc again since and was prescribed another course of omeprazole and told to do a stool sample to check for H phloryi (not sure if that’s how you spell it). Finished my omeprazole about 4 weeks ago and the symptoms didn’t come back for a few weeks or so after finishing the meds this time but are now back and awful. I only got round to dropping a stool sample in last week but they said the sample was too old so the lab rejected it (I dropped it in an hour after going so no idea how it was too old) but anyway I will collect another sample pot and do it again this week. But my symptoms have progressed so much and what I am suffering with is:

  • An extremely sore throat burning acid although I must admit since stopping the omeprazole last I haven’t suffered too much which this symptom but at times it has been horrendous
  • nausea/feeling sick and my stomach quite often churns/bubbles and more so recently I almost feel it contracting. My stomach very rarely feels ok.
  • excessive burping/flatulence
  • TMI - but stools are either on the constipated side or wetter side, never really an in between. I’m not the best with drinking enough water since I’ve had little one as I’m so busy I forget (I always drank loads before him) so need to improve my water intake a bit I think. I have noticed undigested food in stools so don’t know if my acid is actually too low?
  • coughing on and off with reflux.
  • most recently I bent over and bought up some food (this was first thing in the morning and hadn’t eaten since dinner the night before).
  • Really bloating up after eating
  • this symptom is almost scaring me the most - I feel a lump or something going on in my throat but it almost feels like the nerves or something you can feel at the front right of your (my) throat are damaged, they hurt and I get a feeling of obstruction when eating and swallowing, it’s a hard to explain but my nerves (I think that’s what it is (You can feel it sticking out the front right of your throat) really doesn’t feel right and hurts and behind that is where I feel a lump/obstruction feeling. I even wondered if I was straining them as I often sit holding my little chunk without anything supporting my neck but even more scarily the last few days or so I’ve also felt a weird feeling on the right hand side of my tongue like it’s swollen or something weird. Either way, something in my neck/throat doesn’t feel right. I have no visible lumps or anything untoward visually or that I can feel. I know you can get something called globus with acid reflux which is a painless feeling of a lump but this is not painless and as mentioned, I feel like my nerves or something in my neck doesn't feel right, and now my tongue feels weird on one side.

I am so so scared what is going on with my body. I feel like my throat has been damaged from the acid and I am utterly miserable from
the daily symptoms. I feel like my maternity leave and enjoyment of my gorgeous little boy has been hindered by feeling so rubbish. He also suffers with reflux and has been on omeprazole since several weeks old after stopping drinking his milk 😟.

I suffer with health anxiety anyway, as my mum and dad have both passed fairly unexpectedly in the last few years and there have been failings with their health. My dad actually passed away when DS was 3 weeks old so watching him die over 2 days in hospital was traumatic at a time that should have been spent in my baby bubble. But thank goodness for my little one getting me through.

I am trying to confide in my partner that I’m suffering and terrified what is going on with my body and also miserable which is why I’m snappy/grumpy and not myself etc at the moment but I feel very alone. He tries to be supportive and is in so many ways (is very hands on with DS and at home when not working etc), but he just says you need to keep going back to doctors. I can’t sleep at night as my mind is running wondering what is wrong with me. When I talk to my partner he just mentions going back to docs but then 2 minutes later he’ll be like what’s for dinner. I am a very negative person who has always fears the worst and lives on the pessimistic side (hate this about myself but my mum was the same so think I’ve got this trait from her growing up). But I am terrified, in pain the majority of the time and just really want someone to help me. I know the NHS are on their knees and have a lot of great staff but I can’t even get a face to face with them half the time, they triage each request for help and have told me to wait 4 weeks at times this year for an appointment as they deemed it to be able to wait until then. I had scabies fairly recently too (which was horrendous) and because they didn’t do a face to face they misdiagnosed the rash and it took over 2 months to be correctly diagnosed and treated). Anyhow, I’m going off on a tangent. My partner never gets sick and doesn’t understand what it’s like to feel so rubbish everyday when being alone with a 10 month old for 12 hour days. I’m just so scared and so fed up of being in pain ☹️

I used to eat such a healthy diet, in pregnancy I ate quite badly as I really struggled with my appetite going from being quite small before pregnancy to me constantly wanting to eat in pregnancy and craving bad food all the time. But since little one my diet has fluctuated a bit being good but then being sleep deprived and ordering a takeaway once a week. Although, in the last 3 weeks we’ve eaten super healthy (raw clean food, avoiding ultra processed etc) and most days I am eating Greek yogurt and fruit, eggs on their own, chicken and veg, sometimes with some sweet potato. I’m 9st 11 at the moment and want to get back to my pre pregnancy 8 and a half stone, or even 9. I do drink 2 cups of coffee a day and a cup of decaf tea before bed so don’t know if cutting out coffee would help? I very rarely drink alcohol and I don’t smoke.

So sorry for the long post. Thanks for reading if you’ve got this far.

OP posts:
Smartiepants79 · 01/06/2024 21:00

Cut out the caffeine and all alcohol.
Sugar and especially artificial sweeteners are a real trigger for my reflux.
It can take months to truly be better.
Do the stool sample and look very carefully at what you are eating.

LuckysDadsHat · 01/06/2024 21:25

You may have an hiatus hernia. It could be worth asking the GP for a referral for a gastroscooy. I have one.

Figgysmum · 01/06/2024 21:41

This sounds exactly the same as I had. The doctor prescribed me Lanzoprazole which helped. I had a gastroscopy because I felt sure I had a lump in my throat. I had unbelievable bloating, wind and burping. I couldn’t eat properly either. It settled down after about a month. I won’t touch fizzy drinks or artificial sweeteners ever again because I’ve found they set me off again.

recrem123 · 01/06/2024 21:46

Figgysmum · 01/06/2024 21:41

This sounds exactly the same as I had. The doctor prescribed me Lanzoprazole which helped. I had a gastroscopy because I felt sure I had a lump in my throat. I had unbelievable bloating, wind and burping. I couldn’t eat properly either. It settled down after about a month. I won’t touch fizzy drinks or artificial sweeteners ever again because I’ve found they set me off again.

Thank you. can I ask when you say it went away after a month, what you mean? A month after finishing lanzoprazole? I’ve had this for 9 months and have had three courses of omeprazole. I very rarely drink anything fizzy and have cut back in sugar but do have sugar in my coffee so perhaps need to stop that.

OP posts:
recrem123 · 01/06/2024 21:49

LuckysDadsHat · 01/06/2024 21:25

You may have an hiatus hernia. It could be worth asking the GP for a referral for a gastroscooy. I have one.

I think that’s a good idea, thank you. I’ve read most hiatus hernia they won’t do anything for though which is worrying as I can’t live with these symptoms

OP posts:
Figgysmum · 01/06/2024 21:50

recrem123 · 01/06/2024 21:46

Thank you. can I ask when you say it went away after a month, what you mean? A month after finishing lanzoprazole? I’ve had this for 9 months and have had three courses of omeprazole. I very rarely drink anything fizzy and have cut back in sugar but do have sugar in my coffee so perhaps need to stop that.

Yes after taking it. I really feel for you, it’s absolutely awful. I do believe you have to watch what you eat. I’m not tolerant of fibre either.

endofthelinefinally · 01/06/2024 21:52

It sounds as if the omeprazole works but your doctor keeps stopping it. Some people with GERD just need to be on it long term . Medications such as omeprazole only work while you are taking them.
Still, a gastroscopy is probably advisable to exclude anything else.

UpToonGirl · 01/06/2024 21:53

Op, I am having some of the same symptoms, have been for a while. I also have the lump feeling and I do get how scary it is but it seems to be a common symptom. Sometimes it's so painful, it's worrying

I started on omperazole but it actually made my symptoms worse so I'm on lamprozole now. The GP has mentioned a camera investigation but gastrology keep pushing back.

I find certain things make it worse so I'm trying to identify them all now, chocolate and yoghurt (which surprised me) are the main ones for me. Probably coffee but I haven't been able to bring myself to cut down yet!

recrem123 · 01/06/2024 21:55

endofthelinefinally · 01/06/2024 21:52

It sounds as if the omeprazole works but your doctor keeps stopping it. Some people with GERD just need to be on it long term . Medications such as omeprazole only work while you are taking them.
Still, a gastroscopy is probably advisable to exclude anything else.

I haven’t been diagnosed with GERD as of yet but think I need more investigation like you say. I do not want to be on omeprazole long term, it is not a safe drug to take long term unfortunately and has a multitude of side effects including osteoporosis. My father was on omeprazole for many years and had severe problems with bone deterioration.

OP posts:
rainydaysinautumn · 01/06/2024 21:59

I have the exact same symptoms as you OP. Currently trying Omeprazole but it’s making the lump in the throat worse if anything.

I’m thinking of going back to the GP and asking for a referral for an endoscopy. I also have health anxiety and googling has made me feel so much worse which probably exacerbates the symptoms too.

JustWannaBeWorthIt · 01/06/2024 22:05

Sounds like hiatus hernia to me, and that your oseophagus is feeling strained from the repeated acid. I had the same and ignored it (trust me when I say there is no point 'battling through' acid reflux as it'll only damage your throat) eventually my oesophageal muscles went into spasm, which meant I couldn't even swallow a sip of water.

After that I was given omeprazole which didn't help much, then had a barium swallow which confirmed the hernia, then changed to Lansaprazole which helped loads.

I've lost four stone now and hardly take it at all now; maybe once a month.

recrem123 · 01/06/2024 22:07

rainydaysinautumn · 01/06/2024 21:59

I have the exact same symptoms as you OP. Currently trying Omeprazole but it’s making the lump in the throat worse if anything.

I’m thinking of going back to the GP and asking for a referral for an endoscopy. I also have health anxiety and googling has made me feel so much worse which probably exacerbates the symptoms too.

So sorry you’re going through this too! I am definitely going to push for an endoscopy too. My health anxiety definitely doesn’t help but I genuinely feel so awful everyday and I can’t be on omeprazole forever. I’m really trying to stay off google

OP posts:
LuckysDadsHat · 01/06/2024 22:07

recrem123 · 01/06/2024 21:49

I think that’s a good idea, thank you. I’ve read most hiatus hernia they won’t do anything for though which is worrying as I can’t live with these symptoms

They can give medication. Or they can operate. The surgery is a long recovery and also can fail so they will always try medication first.

endofthelinefinally · 01/06/2024 22:08

recrem123 · 01/06/2024 21:55

I haven’t been diagnosed with GERD as of yet but think I need more investigation like you say. I do not want to be on omeprazole long term, it is not a safe drug to take long term unfortunately and has a multitude of side effects including osteoporosis. My father was on omeprazole for many years and had severe problems with bone deterioration.

Sometimes you have to balance the risks. I have had to be on it long term because of the risk of stomach ulceration, haemorrhage and cancer. There isn't a drug that doesn't have side effects. My osteoporosis was caused by the prednisolone I was on for another disease. I had a couple of bleeds, hence the omeprazole. I am off the prednisolone now, but my quality of life is so bad because of gastric pain and reflux, I have switched to lansoprazole for a trial period.
It is really hard to live with chronic illness, knowing that everything you take is risky.
It is definitely worth checking for hiatus hernia though, because that can be fixed.

recrem123 · 01/06/2024 22:14

LuckysDadsHat · 01/06/2024 22:07

They can give medication. Or they can operate. The surgery is a long recovery and also can fail so they will always try medication first.

I’m so sorry to hear that. It sounds like you’ve had a really tough time health wise. Completely understand, it’s such a shame these meds which are so helpful come with such side effects. A lot of comments seem to suggest hiatus hernia so I definitely think I’ll be pushing doctors to refer me for a check for that. Thanks for taking the time to read and reply.

OP posts:
recrem123 · 01/06/2024 22:16

recrem123 · 01/06/2024 22:14

I’m so sorry to hear that. It sounds like you’ve had a really tough time health wise. Completely understand, it’s such a shame these meds which are so helpful come with such side effects. A lot of comments seem to suggest hiatus hernia so I definitely think I’ll be pushing doctors to refer me for a check for that. Thanks for taking the time to read and reply.

Sorry, responded to wrong comment here 😂 oh ok, that’s good to know! Thank you 😊

OP posts:
recrem123 · 01/06/2024 22:17

endofthelinefinally · 01/06/2024 22:08

Sometimes you have to balance the risks. I have had to be on it long term because of the risk of stomach ulceration, haemorrhage and cancer. There isn't a drug that doesn't have side effects. My osteoporosis was caused by the prednisolone I was on for another disease. I had a couple of bleeds, hence the omeprazole. I am off the prednisolone now, but my quality of life is so bad because of gastric pain and reflux, I have switched to lansoprazole for a trial period.
It is really hard to live with chronic illness, knowing that everything you take is risky.
It is definitely worth checking for hiatus hernia though, because that can be fixed.

I’m so sorry to hear that. It sounds like you’ve had a really tough time health wise. Completely understand, it’s such a shame these meds which are so helpful come with such side effects. A lot of comments seem to suggest hiatus hernia so I definitely think I’ll be pushing doctors to refer me for a check for that. Thanks for taking the time to read and reply.

OP posts:
Passiflora2 · 01/06/2024 22:24

I had some of your symptoms some time ago . I was referred for an endoscopy but panicked and they couldn’t do it. I worked out eventually it was bread. Every time I eat bread the symptoms start up again. Some bread is okay but only bread which is made from scratch without any additives and using organic flour , most usually sourdough. I eat virtually no bread now and make my own sourdough.

sparkleowl · 01/06/2024 22:26

Figgysmum · 01/06/2024 21:41

This sounds exactly the same as I had. The doctor prescribed me Lanzoprazole which helped. I had a gastroscopy because I felt sure I had a lump in my throat. I had unbelievable bloating, wind and burping. I couldn’t eat properly either. It settled down after about a month. I won’t touch fizzy drinks or artificial sweeteners ever again because I’ve found they set me off again.

The same here. Had a gastroscopy / endoscopy but nothing wrong, just too much acid.I take one Omazaprole in the morning every day and have done for five years now and it changed my life.Wonderful.

TikTokCat · 01/06/2024 22:31

I could have written this post. Went to the GP yesterday and cried as I feel so bad.
So much acid that I am coughing up pink phlegm so I've been referred for a chest xray, I have to do the pylori stool sample, and then get omezaprole to take.

Interested to hear any positive outcomes?

Curlyhaired · 01/06/2024 22:32

Hi. Sorry to hear about your suffering and about your grief when it is such a special time for you. Unfortunately, I have been in similar situations. I had terrible gerd at one point and still suffer a little now. Do you have a wedge pillow to sleep on? It generally helps keep mine under control now. I have also been on omeprazole and try to only take it now when I'm really feeling it ( I know it's meant to build up but taking it occasionally seems to work for me). At one point when I had gerd and possible long COVID I did a low histamine diet (which is very limiting) but helped me feel so much better so that may be worth looking at.

recrem123 · 01/06/2024 22:33

Passiflora2 · 01/06/2024 22:24

I had some of your symptoms some time ago . I was referred for an endoscopy but panicked and they couldn’t do it. I worked out eventually it was bread. Every time I eat bread the symptoms start up again. Some bread is okay but only bread which is made from scratch without any additives and using organic flour , most usually sourdough. I eat virtually no bread now and make my own sourdough.

Oh that’s interesting. I’m definitely going to start a food diary to try and see if there’s any clear triggers!

OP posts:
Lifelikinotdothinki · 01/06/2024 22:40

I’m on Nexium, which is a bit stronger than Omeprazole, twice a day. I have been for years. Otherwise I suffer like you @recrem123 . I think you need another prescription.

sleepy78 · 01/06/2024 22:42

Hello
I have this and am on rabeprazol long term. However, I think you should definitely look at food triggers. Mine include tomato, onion, wine and cheese. The worst is tea. I can only have a cup in the morning and then I drink infusions for the rest of the day. Don't worry about the lumpy feeling in your throat,it's a classic symptom.

JustWannaBeWorthIt · 01/06/2024 22:52

Definitely look at your triggers; chocolate, sometimes even one bite, makes me feel like shit.

Don't eat anywhere near to bedtime, and try to sleep propped up a little (I slept on three pillows for years).