My H. Pylori Story
Posted: Mon Jun 18, 2018 7:29 am
Hello everyone! My journey with h. pylori started at least 2 years ago. I live in the US, so how I got it or how long I’ve had it, I have no idea. May of 2016 I had a weird feeling in my stomach that felt like I had to eat NOW. I was out with family and we stopped at a restaurant. While we waited for our food my weird stomach feeling progressed and I went into panic mode because I had no idea what was wrong with me. I ended up fine after eating something. Fast forward to the middle of August 2016 and the weird pain returned and this time it felt like gnawing hunger but it was accompanied by terrible anxiety symptoms too because, again, I had no idea what was wrong. The pain didn’t stop and I didn’t feel like eating this time which made everything 10x worse. The gnawing hunger escalated to major stomach pain and weight loss. My anxieties were through the roof. I went to urgent care and the doctor on staff blew me off and told me to see my cardiologist (I have a genetic heart condition). I made an appointment with a GP and while I waited for that appointment, my husband was missing work because I couldn’t take care of myself or our family. When I finally went to see my GP she prescribed anti-anxiety medication. I told her my stomach was bothering me terribly, I wasn’t able to eat, and that was causing my anxiety. Well, she said take this and see how it goes. Great. I could tell the doctors thought I was nuts and that all my problems were in my head. I took the medication and it made my anxiety go through the roof! I stopped it immediately and called the GP the next day. She referred me to a GI.
Went to the GI, described everything that had happened, how I was feeling, that I was losing weight, couldn’t eat, and I still had terrible stomach pain. He ordered an abdominal ultrasound. It came back normal. Went back to him (I had been desperate and was searching online for answers, which is where I read about h. pylori) and I asked specifically if I had an ulcer or maybe h. pylori and if they could test for it. He said my symptoms didn’t match h. pylori so he prescribed omeprazole and if THAT didn’t help, I’d need to go in for an endoscopy. The omeprazole really helped a lot (it took several days) and when I went back for a follow-up he was all like great, keep taking it and call if your symptoms return. This was in September 2016. I finished my prescription and I was fine for a long time. Fast worward again to July 2017 and my symptoms returned: gnawing stomach pain, sometimes my stomach would feel ‘hot’, sometimes dizziness too. I got my prescription for omeprazole refilled and was fine again. Went off of it again but this time symptoms returned much sooner. Now we are in early 2018 and I’m realizing this isn't getting better and I didn’t want to take PPIs for the rest of my life. The pain felt like I was hungry all. the. time. and I was never satisfied - no matter how much I would eat. I also wouldn’t feel normal hunger pangs; I would just eat during the times of the day that I normally had meals and I would need to stop myself from eating since I didn’t feel myself getting full.
Everything came to a head when I was talking with a friend from my church who was a GI nurse. I told her all my symptoms and right away she said “You know, it sounds like you have h. pylori. You should really get tested.” A week later I had made an appointment with my GP again and specifically requested the blood test for h. pylori. My test came back positive and when I was at my appointment to discuss treatment, she asked “So what made you think it was h. pylori?” Needless to say I was a little bit frustrated by that question.... Anyway, I was prescribed Pylera which was outrageously expensive, so I took the triple therapy separately: bismuth (pesto bismol), pantoprazole, tetracycline, and metronidazole for 14 days. I never missed a dose. During the antibiotic treatment I did really well. My GP said to follow up if my symptoms returned. I finished my course on May 20 and I was feeling great! I called her office to schedule a breath or stool test and she said she doesn’t do them, so she referred me back to the GI doc I had seen. Talked to his nurse and she said they don’t do those tests and they’re not accurate anyway. I had been feeling fine but I wanted to find out if my hp had been eradicated. Well, here we are June 17 and my gnawing hunger pain has come back. It hasn’t been as bad, but it’s there. Some days I don’t have it, some days are mild and days like today it feels like I’m almost back at square 1. I’m frustrated that the GI doesn’t do a breath or stool test! What I’m thinking he will want to do is make an appointment, talk about my symptoms, then schedule an endoscopy. I am so sick of the doctors here! I feel like I have gotten the runaround for 2 years, and to get an accurate diagnosis I HAD TO ASK them to check for hp. I have already spent so much money trying to get this figured out and to pay to also get an endoscopy is just about pushing me over the edge. I don’t even know if he’d do a biopsy to check for hp...
Anyway, that’s my very long story so far. I have been so grateful for all the posts I’ve read on this forum because I see I’m not alone with this problem and I’m not crazy. Here’s hoping we all beat this thing and never get it again! God bless .
Went to the GI, described everything that had happened, how I was feeling, that I was losing weight, couldn’t eat, and I still had terrible stomach pain. He ordered an abdominal ultrasound. It came back normal. Went back to him (I had been desperate and was searching online for answers, which is where I read about h. pylori) and I asked specifically if I had an ulcer or maybe h. pylori and if they could test for it. He said my symptoms didn’t match h. pylori so he prescribed omeprazole and if THAT didn’t help, I’d need to go in for an endoscopy. The omeprazole really helped a lot (it took several days) and when I went back for a follow-up he was all like great, keep taking it and call if your symptoms return. This was in September 2016. I finished my prescription and I was fine for a long time. Fast worward again to July 2017 and my symptoms returned: gnawing stomach pain, sometimes my stomach would feel ‘hot’, sometimes dizziness too. I got my prescription for omeprazole refilled and was fine again. Went off of it again but this time symptoms returned much sooner. Now we are in early 2018 and I’m realizing this isn't getting better and I didn’t want to take PPIs for the rest of my life. The pain felt like I was hungry all. the. time. and I was never satisfied - no matter how much I would eat. I also wouldn’t feel normal hunger pangs; I would just eat during the times of the day that I normally had meals and I would need to stop myself from eating since I didn’t feel myself getting full.
Everything came to a head when I was talking with a friend from my church who was a GI nurse. I told her all my symptoms and right away she said “You know, it sounds like you have h. pylori. You should really get tested.” A week later I had made an appointment with my GP again and specifically requested the blood test for h. pylori. My test came back positive and when I was at my appointment to discuss treatment, she asked “So what made you think it was h. pylori?” Needless to say I was a little bit frustrated by that question.... Anyway, I was prescribed Pylera which was outrageously expensive, so I took the triple therapy separately: bismuth (pesto bismol), pantoprazole, tetracycline, and metronidazole for 14 days. I never missed a dose. During the antibiotic treatment I did really well. My GP said to follow up if my symptoms returned. I finished my course on May 20 and I was feeling great! I called her office to schedule a breath or stool test and she said she doesn’t do them, so she referred me back to the GI doc I had seen. Talked to his nurse and she said they don’t do those tests and they’re not accurate anyway. I had been feeling fine but I wanted to find out if my hp had been eradicated. Well, here we are June 17 and my gnawing hunger pain has come back. It hasn’t been as bad, but it’s there. Some days I don’t have it, some days are mild and days like today it feels like I’m almost back at square 1. I’m frustrated that the GI doesn’t do a breath or stool test! What I’m thinking he will want to do is make an appointment, talk about my symptoms, then schedule an endoscopy. I am so sick of the doctors here! I feel like I have gotten the runaround for 2 years, and to get an accurate diagnosis I HAD TO ASK them to check for hp. I have already spent so much money trying to get this figured out and to pay to also get an endoscopy is just about pushing me over the edge. I don’t even know if he’d do a biopsy to check for hp...
Anyway, that’s my very long story so far. I have been so grateful for all the posts I’ve read on this forum because I see I’m not alone with this problem and I’m not crazy. Here’s hoping we all beat this thing and never get it again! God bless .