Arggghhhhh- H Pylori

[Aysh666]

Upper abdo pain pain, severe bloating, heartburn, change in bowel movements ... 6 weeks of this. After being rather persistent with Gp practise (4 visits) H pylori positive. 7 days of 1g Amoxicillin, 500g Clarithromycin and 20mg Omeprazole (all x2 per day). Worst 7 days ever!!! 7 days on from that and many symptoms have returned ... Tight Painful ribs, Awful heartburn, upper abdo swelling. Strange pain in upper right abdomen which seems to radiate right through to my back.

I was given the results and an instruction for meds and that is it. I have had to return and ask for further omeprazole although I requested an alternative as I felt it was no longer effective.

Can anyone help:

I have been given Lansoprazole 30mg per day .... is this effective?

Is it worth re testing myself, obviously I risk a false negative however a positive is a positive isn't it and requires 2nd line treatment?

Anyone else had the constant uncomfortable 'knot' feeling just below right ribs through to back? (I feel like I have a rod in there!

Anyone else suffering the orangey brown stools (formed now at least)

HELP!!😧😧

[Aysh666]

And ..... I have an additional cough and tight chest and breathing😶

[xjrs in reply to Aysh666]

Do you think that you may have had COVID-19 recently? I've heard for some people it can really mess with the digestive system and for some time afterwards. I've read that those with H pylori may be more susceptible to COVID-19 and also those who have had COVID-19 may be more prone to H pylori:

timesofindia.indiatimes.com...

[Aysh666 in reply to xjrs]

Hi, strangely enough I had COVID last year and who knows how long I may have had the Pylori for 🙈

[xjrs in reply to Aysh666]

If you are additionally getting issues with your breathing, you might want to ask to be referred for help with long COVID. I believe some centres have been specifically set up for this.

[Aysh666 in reply to xjrs]

I had given that some thought and may very well follow up on it. Not sure we have any over hear in the UK though ... we are a little slow on the uptake when it comes to helping lol

[xjrs in reply to Aysh666]

I am in the UK. I believe that there are clinics. I found this from 2020:

england.nhs.uk/2020/12/long...

[Aysh666 in reply to xjrs]

Thank you! For some reason I made the assumption that this was a site in the USA 😁

[xjrs in reply to Aysh666]

It's global

[Hidden in reply to Aysh666]

Hi,

All symptoms of a severe IBS flare up. Acidic feeling in the stomach and pain, severe bloating, severe constipation, tightness in the chest with a burning sensation across the chest and an uncontrollable asthmatic type cough, lips that start feeling sticky and finally raw mouth and peeled lips. Actually feels like you have taken acid, fluid not the drug! The worst flare up I have had in a long while.

My Gastro specialist told me a month ago I should be taking Omeprazole 30 to 45 minutes before a meal, bingo it works better than just before or after a meal. I have just had 2 weeks of this and ended up with a burnt esophagus, raw mouth and peeled lips. While being treated for non existent heart problems. I have to concede it did sound like a heart problem to start with.

What I found was a hot lemon and honey drink, 5 teaspoons of lemon and honey to taste in a mug not a tea cup, to give an idea of quantities. Helped soothe the stomach for a short while and always loved lemon and honey drinks anyway. I had thought this would really stir up the stomach making it worse, but it didn't I'm pleased to say and relieved it didn't. For stomach acid in the mouth I found chewing gum neutralized it well, I used sugar free because I'm T2 diabetic and none of the mint type flavours as they don't help the chest burn. I actually used strawberry.

Both purely anecdotal evidence but thought I would give them a try, had to do something after 2 weeks of this. Still using both periodically, but less and less.

As yet I don't have all the answers and maybe never will but a change in diet and less stress seem to be easing the problem. Until the next flare up!

I'm slowly reintroducing foods back into my diet while some will be permanently deleted. I have hooked up with some good medical specialists at long last who are all working in the same direction trying to help and not just throwing pills at the problem, hoping I'll go away.

Don't sit back and put up with this. Get it seen too sooner than later as this can lead to more serious problems left to continue.

Cheers

[433013 in reply to Hidden]

Hi. I totally agree with you! Are you clear now of H pilory? How many tests have you had done post eradication?I've had three eradication therapys and the last one was in june this year. Still have the symptoms like day one! I've had a stool test done and that came back negative but I was taking PPI's so that could have affected the result.. so I will do another one this time no PPI's for at least 1 week.. Could I be h pylroi positive after 3 eradication theraphys?

What are your thoughts on this?

Regards

[Aysh666 in reply to 433013]

Hi, I would like to think the answer is no you surely couldnt and common sense would say not. I am not trying to undermine you or suggest that your symptoms are not very real however could you be the same as I was completely in tune with every tiny little thing ... anxious ... permanently thinking about you feel this here, that there etc etc ... I only say this as it was not until I accepted that although the symptoms are real they are anxiety/emotionally related/brought on that they began to subside.

[AMerchant]

Hi

I have had my struggles with H Pylori infection for the last 3 years. On and off symptoms flare ups. You can read about it here

healthunlocked.com/opa-gord...

I would suggest the following if you don't mind spending a bit on yourself

1. If you can stop Lanzoprazole for 14 days before retesting as it can give a false negative. Try to manage with Gaviscon Advance.

2. Get breath test done which apparently is the most effective test for h pylori detection after endoscopy. Your GP will send you for the stool test because it is cheap for NHS but least reliable. So better get it done in private

3. If you are still positive ask your doctor to give you a 14 days treatment (over 90% success rate) instead of 7 days treatment (70% success rate). Again under NHS the GP will only give you 7 days treatment because its cheaper for the NHS.

So if you pay and get a consultation with a gastroenterologist you will very likely get the correct diagnosis and treatment. Otherwise under NHS you are likely to keep going round in circles as I did for 3 years.

Wish you all the best

[Enga211 in reply to AMerchant]

Hi! Just read your post re h pylori, you went through a lot! I was diagnosed with h pylori couple years ago and prescribed the usual treatment, but I didn’t go for it. A course of one antibiotic is harsh enough, cannot imagine taking 2 in one go! Instead I changed my diet to eating alkaline foods only and taking slippery elm for few months. I then took a h pylori home test and tested negative. I’ve still hot tummy troubles, still looking for magical cure. Good luck to everyone suffering.

[Aysh666 in reply to Enga211]

Yes the antibiotics were extremely harsh! I feel for you with your ongoing troubles and fear j kay be in for the same 😢

[AMerchant in reply to Enga211]

It is difficult I agree but necessary for h pylori eradication. Everywhere in the world (except in UK) doctors consider 14 Day treatment for H pylori standrard as the success rate of 7 day treatment is not good enough. But in the UK to save money NHS will not allow GP to give out 14 days prescription.

To reduce the impact of antibiotics it is important to take probiotics 3-4 hrs after taking antibiotics to replenish the good gut bacteria that get also killed by antibiotics

[Aysh666 in reply to AMerchant]

I am not sure I could have coped with 14days however if that is what is necessary then that is what should have been done. I will be re testing and if positive will be demanding a referral. Could you suggest some probiotics??

[AMerchant in reply to Aysh666]

I get mine from Holland and Barrett. You will need high dose (20 billion per day capsules) when taking antibiotics which can be reduced couple of weeks after antibiotics couse is completed

[Aysh666 in reply to AMerchant]

Thank you for the sound advice! I will be following it for sure 👍

[Aysh666 in reply to AMerchant]

One thing ... I worry about attempting time off Lanzoprazole or Omeprazole as I am anxious of allowing permanent damage/further ulcers etc to form/worsen. Obviously my anxieties are based on internet research as the only info received from my GP was a text with the result and prescription instructions!

[AMerchant in reply to Aysh666]

I know it is hard coming off PPI so I using refuce the dose gradually before stopping completely for 14 days before taking the test.

Note that even if the bacteria has gone it could take a long time to get your system back to normal because it depends on how much damage it did to the stomach lining when it was in the stomach. After 3 years mine is still not back to what it was but getting there very slowly.

Diet is as important as medication in post eradication period. Aviod at all cost spicy or hard to digest food or anything that could easily irritate the stomach lining

[Aysh666 in reply to AMerchant]

Thank you x

[Aysh666 in reply to AMerchant]

HI, Just had a look into Private Gastroenterologist and in my area initial consultation and endoscopy is in exess of 2k 😬

[AMerchant in reply to Aysh666]

That's sound about right. Another thing you can do is ask your GP for referral to NHS gastroenterologist on a 2 week urgency basis if you can convince the GP that you are really worried and needs endoscopy ASAP

[Aysh666 in reply to AMerchant]

And so here it is .... endoscopy day ... any tips/advise ... utterly dreading this

[AMerchant in reply to Aysh666]

Don't worry it will take only 15 to 20 mins max. Get General anesthesia if you want to be relaxed. Asked them to take multiple biopsy to test for h pylori and also check for inactive gastritis. Good luck

[Aysh666 in reply to AMerchant]

Thank you ... followed your advice, all biopsies clear and endoscopy was not so bad. Thank you. Not sure what the next step is though as the symptoms have not gone away, maybe my digestive system is just changing as I get older (or the H Pylori has affected it longer term) and I need to be a little kinder to myself dietary wise.

[AMerchant in reply to Aysh666]

Glad to hear that there is no issues identified with biopsy.

H Pylori does messes up your digestive system and it can take months for normality and you may still need diet control and PPI or antacid to keep things calm. Good luck

[433013 in reply to Aysh666]

Hi. How are you feeling? Any better after 4 month? I'm in the exact same situation like you. Please share any advice!Regards

[433013 in reply to AMerchant]

Hi. I am in this exact same situation! Don't know what to do?? It's been 3 years and 3 eradication treatments and nothing.... any advice or recomendation.. please share!!

[Aysh666 in reply to 433013]

HI, .....I am very well now thank you. I would say my digestive system has been altered by the H pylori as I am slightly more susceptible to minor IBS and Acid reflux bouts however it took months post Pylori eradication to get to that point. I think I spent so many months before my positive H Pylori result having to be insistent with doctors, putting up with being made to feel a nuisance and a hypochondriac that I became rather over sensitized to every little twinge and ache and pain in my body, I started to feel like there was something rather sinister going on and that it was only a matter of time before I would become seriously ill and the dr's would have to admit they missed something terrible...........then I received the H- pylori result (after insisting on the test, one of many) and had the treatment, bowels returned to normal and I felt some relief however anxiety was already set in, I had private scans, camera tests the works, spent a fortune and shed a lot of tears. All of this could have been avoided if the Dr's had taken me seriously initially and done the basic tests instead of the easy IBS line. Once the test result was in I also think they could have taken the patience to explain to me that it may alter my digestive system for sometime and it may take months to settle again but no, I just received a text with the result and a list of medication to collect and instructions on how to take it.

Listen to your body, be insistent but also remain calm with common snes inmind. I do feel that if I had not allowed anxiety to take over (for whatever reason) then I would returned to a level of 'normalness' much sooner.

Let me know how you get on. PM me if you ever need.

[angelwings52]

Have you had your gall bladder checked? Because the pain you're describing could be gallstones or an infection. Best thing would be to speak to your GP about getting an ultrasound scan done, as gallbladder problems can be overlooked.

[Aysh666 in reply to angelwings52]

Hi, Ultrasound done and no problems with any organs ... I am starting to think it may all be anxiety related as I was very anxious when I had the H Pylori 🤷

[Aysh666]

Thank you, I did consider this also. To be honest though I have had to persist and be in and out of the gp practise 5 or 6 times in the last few weeks to get this far and I now feel like they just think I am a complete hypochondriac and fell I just cannot bear going in any more 😣😞

[Aysh666]

Has anyone els e suffered an annoying cough/throat clearing ... mucus in throat whilst taking lansoprazole or omeprazole???