Acid reflux and stomach pain: worried about zollinger-ellison

[Smiekie_t]

Hi everyone! I'm new to this group and looking for some people with the same experience.

I'm really hoping my symptoms boil down to anxiety, but I'm starting to worry (how ironic) that it's more serious. Last year I had a strange case of leftsided numbness for months. MRI showed nothing and after this the symptoms disappeared. Conclusion: anxiety.

I was fine for 6 months when I started having bad heartburn and pain in my left upper stomach. Not related to anything I eat, it's there 24/7. Dr put me on pantoprazol, which works, but every time I try to come off the symptoms return.

I've had these tests:

- h pylori: negative

- ultrasound: clear

- MRI (private): negative

- endoscopy: all clear

- 24h pH monitoring: no results yet

On the one hand I'm happy they haven't found anything wrong. On the other I feel like I need some more tests to exclude anything scary. If it were functional heartburn or dyspepsia, why does the ppi work so well? That's why I'm worried it is something like zollinger-ellison (net cancer) and they just haven't found it yet. Anyone out there with persistent heartburn and ulcer-like pain and it turned out to be anxiety? Thanks!

[FRreedman]

I used to suffer from severe heartburn, which was eventually diagnosed as being caused by IBS. I have been taking Omeprazole for many years, because, as soon as I stop taking it, my heartburn (severe) recurs. Have you been referred to a GI consultant?

[Smiekie_t in reply to FRreedman]

Yes, the GI specialist referred me for a pH test to check for Gerd. I'm especially worried about the combination of 24/7 acid and ulcer-like pain. Tbh I hope it's IBS so I can take the meds and get on with my life

[greekqueen in reply to FRreedman]

Hi, I have been on Omeprazole since 2005, I have severe acid reflux from having a gastric band. If you stop taking the meds the reflux comes back. I take it morning and night and it's lifelong. It does mean you have to watch your eating that bit more. I also had stomach polyps and had them cut out and should have them done again every 3 years as there were a few. You just have to keep an eye on things and look out for any changes and act upon them swiftly if you are worried.

I had all those tests but I couldn't stay off my reflux meds long enough, so I just carried on with my medications and don't have reflux if I do.

You will have to be vigilant about your teeth as the acid does damage then, even on medications, I normally go every month for treatment and have a lit of crowns in my mouth, but even those don't last long.

[cyberbarn]

When people come off PPIs the acid levels often rebound to make it feel like it is worse. My ENT consultant recommended taking Gaviscon Advanced after every meal and at bedtime. Also sleep with the bed raised a bit. It is one of those things that gets worse before it gets better.

[Smiekie_t in reply to cyberbarn]

Thank you. Yes they cause terrible rebound. I wish I could just believe it's rebound though and not anything more serious. Especially the sharp pain in my stomach worries me a lot.

[greekqueen]

It may be you have an ulcer or if your medication is working then you do indeed have reflux and need to carry on taking the meds 🤔

[Smiekie_t in reply to greekqueen]

I don't have an ulcer, they would have seen it during my endoscopy. I sort of wish it was an ulcer so I knew where the pain was coming from. That's why I'm so worried that it's cancer

[Cm1710]

If it was cancer they would have seen in your scans or endoscopy. I also experienced bad reflux when I came off omeprezole, but it subsided after 2 weeks . It just takes a while to readjust. Stress and anxiety cause a lot of symptoms but it’s a viscous circle , I know first hand as I suffer the same . I would try coming off the Ppis as you endo was clear . Good luck

[Smiekie_t in reply to Cm1710]

You're probably right. I'm fed up with all these tests as well and want to get on with my life. I'm going to try and accept the diagnosis and let go.