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Side effects of the treatment are making me regret my choice...

Posted: Fri Apr 15, 2022 7:24 pm
by Loufoca
Hi, first time posting here.
I have a history of stomach problems since childhood. When I was 19-20 I had an endoscopy that detected a hiatal hernia (but at the time, I was negative to h pylori) and I was put on Omeprazole indefinitely. It's been super manageable, I've been very happy with this treatment, no particular side effect from the PPI, and at the time surgery was not an option (things like Lynx didn't exist). Fast forward to 6 months ago (I'm now 36), where my symptoms suddenly go crazy, like the Omeprazole isn't doing anything anymore. I feel full, bloated, nauseated, I can't breathe properly at night (gasping and choking) and I have to raise the head of my bed even more than it already was, and nothing is working. It's getting worse despite my doctor doubling the Omeprazole. I've done every test imaginable, from heart to sleep study (because my first symptoms were gasping at night) and everything is normal.

That's when I think about h pylori since my father had it twice (the last time was very recently and he had to go to the hospital due to a perforated ulcer). My doctor warns me that, being on Omeprazole, the stool test will probably show negative, but advises me to do it anyway without stopping the Omeprazole because at that point I can't stop for 2 weeks without a bad rebound effect. Stool test is negative, but the doctor suggests that I still do the triple therapy since my symptoms are almost textbook h pylori. And I have an endoscopy planned in a few months to see if my hernia has maybe changed, but at this point I'm ready to try anything.

This brings me to this week, where I started the antibiotics course (7 days), and I'm absolutely miserable. I don't have any of the "allergy" symptoms, so I'm not worried about that, but I've felt very nauseated, I had fever yesterday and headache every morning. I can barely eat anything (I'm forcing myself so I can take the next dose of antibiotics) and I have zero energy. I had one good day, day 3, where I felt much better, but then day 4 was the worst! Today, day 5, I'm so close to giving up. I know I have only 2 days left, but I had never had such reaction to antibiotics before. And all of that without even being sure it's really h pylori.

I don't know what to do, I guess I need some reassurance?

Re: Side effects of the treatment are making me regret my choice...

Posted: Sun Apr 17, 2022 2:31 pm
by Helico_expert
yea... it's not good practice to give treatment without proper diagnosis.
Your doctor should have ordered a blood test. only pursue for stool or breath test for a positive blood test.
a negative blood test would suggest you have no H. pylori for the past year (at least).

also, you can switch PPI to H2 blockers for 1 month, then you can do breath or stool test without false negative result from stool test.

if your side effect is really bad from the antibiotics, then you should stop. otherwise, you need to continue to prevent resistance.

so when is your endoscopy? a histology would give you a hint if you still have H. pylori.

Re: Side effects of the treatment are making me regret my choice...

Posted: Mon Apr 18, 2022 7:01 pm
by Loufoca
Hi,
Thank you for replying. It looks like my doctor didn’t do any due diligence in my case, which is a bit worrying. She didn’t mention any of those things! It feels like since Covid, the philosophy in the UK is to give medicines first, ask questions later :(
I did finish the whole course of antibiotics last night. The last 2 days weren’t as bad, I made sure to eat a very bland diet, and I drank ginger ale with all meals, which really helped with the nausea. I also tried to move a bit more to help with the digestion (just walking).
I don’t know when I’ll have the endoscopy unfortunately. The NHS is super overwhelmed so it could be several months. It’s been a very frustrating time to try to get anyone to take my symptoms seriously :(
Once again, thank you!