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My experience and questions after treatment

The various unpleasant manifestations of Helicobacter can be described here. Remember however that the great majority of persons with Hp have no symptoms that they are aware of and consider themselves normal.

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Atrea
Posts: 5
Joined: Tue Oct 30, 2018 9:26 am

My experience and questions after treatment

Post by Atrea » Sat Nov 03, 2018 11:19 am

Hi all, just wanted to share my story so far and seek advice on next steps.

Currently 34/m, in Canada.

7 years ago started having severe panic attacks and what I can best describe as stomach boiling sensations along with the attacks. Just constant stomach growling, pain, etc.

I was treated for anxiety but the stomach symptoms continued.

It took about 4 years of complaining about continuing stomach discomfort before I was properly tested. Before that my doctor kept saying that my symptoms were due to my anxiety.

I got an endoscopy and was diagnosed with h pylori gastritis. No information on how severe, but they didn't mention ulcers or any other damage besides the gastritis.

I had a childhood diagnosis of a penicillin allergy so I received my first treatment with no amoxicillin at this point.

The GI ordered a follow up breath test, came up as positive again.

I received second round treatment at this point, which I tolerated well, but symptoms continued.

I got referred for a follow up breath test again but no luck, lab screwed them up 3 times in a row and it came up as inconclusive. Doctor was frustrated with it so had me come back for another gastroscopy.

Once again h pylori positive and gastritis noted as diagnosis, this time chronic.

At this point since 2 treatments failed I was referred to an infectious disease specialist.

Had another round of antibiotics for another 2 weeks, got retested, still no luck in eradicating it.

At this point doctor told me that I'll just have to live with it and gave me a guide to a low fodmap diet. Was very disappointed to be honest but feeling better overall.

That treatment cycle took about a year and since then I was ok for almost 2 years. Almost no discomfort, eating almost anything, even drinking beer occasionally with no issues.

In the meantime though I did get an allergy test done and it was determined that I am in fact not allergic to penicillin. The childhood diagnosis was wrong, which I thought was great news.

This past summer the symptoms came back with a vengeance. Growling stomach, burning sensation on empty stomach, but also an annoying cough that wouldn't go away, loose stools, fatigue, etc. The works.

So I had a new family doctor and told him my history. He said there were some new treatments available that I didn't do before and that with no allergy to penicillin amoxicillin might be a better option to kill the thing.

I did 14 days of 2000 mg amoxicillin, 500 mg levofloxacin, 120 mg of dexlansoprazole and continued with 60 mg PPI after treatment. This time I felt terrible through the treatment unlike previous times.

2 weeks after antibiotics I stopped taking the PPI with doc's approval because it was giving me lower digestion issues (bloating, lower stomach pain, constipation, etc) and I wanted to know if h pylori is gone for good asap.

At first I felt much better, everything seemed to improve right away. But now about 1.5 weeks after stopping PPI I'm getting a severe burning feeling in stomach, heartburn, burning in esophagus and acidic taste in mouth, and that nasty cough. Also tons of gas in both directions.

I'm booked in for a follow up gastroscopy on December 5th (doctor wanted 2 months break after antibiotics before retesting for h pylori)

So what should I do in the meantime? Retest with stool test? I hate breath test because they mess it up 3/4 times and then I have a 2 week waiting period for results every time.

I've been trying to control my diet. Certain foods just instantly mess me up but then there's just bad days when eating anything is guaranteed pain and gas for hours.

Trying to eat more soups, white rice, protein. Can't eat too many milk products or fresh vegetables without instant regret.

Sometimes I've had to take Tums because of symptoms and I couldn't tolerate the pain.

Any idea on how long this recovery will take?

I'm concerned since I can't really eat a varied diet without pain right now and waiting on being retested. Will post updates when I hear back.
Last edited by Atrea on Sat Nov 10, 2018 8:36 am, edited 2 times in total.

Helico_expert
Site Admin
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Joined: Wed Mar 02, 2011 7:20 am

Re: My experience and questions after treatment

Post by Helico_expert » Sat Nov 03, 2018 10:29 pm

thanks for sharing your story. wish you all the best!

You can certainly ask for stool test if you think breath test is problematic. Also, if you have planned the endoscopy, you can ask the doctor to do a rapid urease test. you'll get result within 10 min.

meanwhile, you can try some probiotics and herbs. the recovery is subjective. some recover within weeks, some take months, and some after a few years.

Atrea
Posts: 5
Joined: Tue Oct 30, 2018 9:26 am

Re: My experience and questions after treatment

Post by Atrea » Mon Nov 05, 2018 8:13 am

Thank you for the reply!

I'm really struggling with my symptoms right now. I went to my doctor but the regular doctor wasn't there and the one filling in just gave me more PPI (dexilant) . I'm concerned that this will interfere with the test but don't think I can tolerate the symptoms otherwise.

Does the PPI interfere with biopsy as well as breath and stool tests?

I brought up ranitidine after reading about it here but the doctor was reluctant to recommend it because it "works with a different mechanism"?

Is it normal to have more severe symptoms after treatment? My stomach actually feels worse than before I started this latest round. The pain is constant rather than intermittent, I can't eat most foods, and it's interfering with my sleep.

Thanks in advance for your help, it's great to have a resource like this.

Helico_expert
Site Admin
Posts: 2826
Joined: Wed Mar 02, 2011 7:20 am

Re: My experience and questions after treatment

Post by Helico_expert » Mon Nov 05, 2018 2:57 pm

PPI can lead to
1. lower H. pylori load. So stool test can fail and produce false negative.

2. turn off urease enzyme from H. pylori. So the breath test and CLOtest (endoscopy) will fail and produce false negative.

Your symptom got worse could be due to the side effect of the antibiotics. The side effect should gradually go away within a week.

You can switch to ranitidine while waiting for follow up breath test.

ranitidine is fast acting medication, but do not stay in the body for a long time. PPI is a slow acting, but stay active in the body for much longer time. So your doctor is right, they work differently. It's up to you to try out ranitidine and PPI.

Atrea
Posts: 5
Joined: Tue Oct 30, 2018 9:26 am

Re: My experience and questions after treatment

Post by Atrea » Thu Nov 22, 2018 10:37 am

Just a small update on my progress for anyone curious or going through something similar.

I went back on the PPI per my doctor's advice, couldn't function without it. Have been on it for a couple of weeks. Was good at first, keeping to a very bland diet and feeling reasonably good overall.

This week I started drinking coffee again and I don't know if that's what did it, but after just 2 days of 1 cup in the morning I'm feeling awful again.

So no coffee for me, dairy products seem to cause issues as well, so I'm going to be cutting them out as well. This is actually the second time I've had dairy issues, first time was 3 years ago before the antibiotic treatment then.

I'm seeing a gastroenterologist soon so hopefully I'll have some more information. They cancelled my gastroscopy for now (clinic seems overbooked) but I'm hoping to have it rescheduled soon.

Will keep you guys posted.

JoeConway
Posts: 11
Joined: Fri Nov 23, 2018 9:55 am

Re: My experience and questions after treatment

Post by JoeConway » Sat Nov 24, 2018 9:48 am

keep us updated i've been following you're story, i have similar symptoms and i have only just been diagnosed with gastritis and h.pylori.
i've just started eradication therapy, it must be frustrating for you to know you're issue and can't help it.
i'm also the same with diet, dont know what to eat cos even healthy foods can trigger symptoms.
I believe its a case of If there are certain foods that cause stomach pain avoid them. rather than a specific diet.
Avoid sugars, wheat, coffee, processed foods, alcohol, dairy, pickled foods, red meats and processed meats. is what i've learned but not personally as i've not tried it yet but i think im gonna try a gluten free diet and no dairy to see if that eases symptoms but don't quote me on any this as im new to it myself and seeking advice about foods.

Atrea
Posts: 5
Joined: Tue Oct 30, 2018 9:26 am

Re: My experience and questions after treatment

Post by Atrea » Wed Dec 05, 2018 7:35 am

So, symptoms wise I'm getting better slowly. I narrowed it down to having to have small meals, no coffee, no alcohol, no spicy foods, no dairy whatsoever, not too much fiber. That's what works for me. Still on Dexilant 60mg daily. I saw the gastroenterologist today, he renewed my dexilant for another 3 months, wants to do a scope and biopsy in 3 places. He's not concerned about PPI messing with results, says if it comes up negative then he'll be happy and I can always do a breath test after the gastritis heals in a couple of months to confirm.

Helico_expert
Site Admin
Posts: 2826
Joined: Wed Mar 02, 2011 7:20 am

Re: My experience and questions after treatment

Post by Helico_expert » Wed Dec 05, 2018 1:33 pm

I hope your GI specialist knows what he is doing. Yes, a follow up breath test a month later when everything is done is a good suggestion.

Atrea
Posts: 5
Joined: Tue Oct 30, 2018 9:26 am

Re: My experience and questions after treatment

Post by Atrea » Tue Dec 11, 2018 2:04 am

Symptoms slowly getting better. I've added mastic gum to my daily routine and that seems to have helped. Or maybe it's just the time spent healing.

I had my gastroscopy today and the results are promising. Right now he says everything looks normal. He took 3 biopsies in stomach and 1 to test for celiac.

Hoping to have the results in a couple of weeks.

Helico_expert
Site Admin
Posts: 2826
Joined: Wed Mar 02, 2011 7:20 am

Re: My experience and questions after treatment

Post by Helico_expert » Tue Dec 11, 2018 8:48 am

Thanks for the update. Do keep us posted.

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