My experience and questions after treatment
Posted: 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.
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.