Acid reflux, h pylori and stomach cancer fears

[LuSmith]

Sorry if this post is long, I feel like I've been spiralling with worry lately, but if anyone just wants to read the gist of what I'm asking see the tl;dr section at the bottom :blush:

So I've been on a PPI (Lansoprazole) for about 6 years now. I've never had an endoscopy or been offered one (don't know why, guess they assumed it was just GERD due to my age then and symptoms. I've been suffering with the following symptoms for many years:

Stomach gnawing sensation (kind of like griping hunger pains)
Bloating
Uncomfortable feeling in the stomach and epigastric area
Pain between the shoulder blades (though this is less now I've been on PPI)
Sometimes liquid in the throat (reflux)
Nausea especially if I don't eat
Occasional vomiting (like once a month)

I know alot of these symptoms can be caused by various things, but does it sound like acid reflux would cause these symptoms even being on the PPI?

Anyway, I was reading up on coming off my PPI as I have to for two weeks to prepare for a h pylori test and I wasn't even looking for this but it threw up a news article from last year about how PPI raises stomach cancer risk. Cue my health anxiety and alarm bells going off. I've always had weird niggling pains under my ribs and around the back and with the vomiting... I'm just really concerned it's something more serious. Or that every day I take a PPI means I'm sentencing myself to death. I know at the same time they were meant to lessen the risk of esophageal cancer because of the reduction of acid.

Tbh I'm also apprehensive about coming off them as I know the one time I forgot to take one I was sick for the whole day. So the two weeks I come off to prepare is going to be hard and I have other appointments to attend so I hope it won't stop me from doing what I need to do.

I know the risk of stomach cancer is probably low anyway, just apparently more than doubled if you take them (especially long term like I have) but I'm so so paranoid that it's too late. I haven't googled symptoms for stomach cancer for fear of it obviously coming up with symptoms I have so I've banned myself from doing so.

I don't know if this is related but I've not been fully diagnosed (had one sigmoidsocopy) but I have suspected IBS too (as well as bladder pain syndrome which is unrelated) but the IBS flare ups can also cause a lot of symptoms for my acid reflux. I get a lot of acid in my throat when sometimes going to the toilet.

I'm thinking of asking to change PPIs or discuss this with a doctor or something anyway when I go to see him, especially regarding my h pylori results. Also, that's another thing, if I do have h pylori the stomach cancer risk heightens. :weep: If I've never been tested for it I could have had it already for 6 years and I'm worried it could be developing or develop into something more now. :scared15:

The doctor won't refer me to a gastro without doing the h pylori test first which has been a conundrum because I was first offered a breath test and then they denied me for one so I've wasted a month waiting. I find it hard to do stool tests as I never go in the morning and they need the sample in by 11am.. (I know it sounds like an excuse but I was scared about coming off the PPI and the side effects of doing so while struggling to get my bowels to cooperate)

I've decided I've no choice but to go through with the h pylori test so I'm gonna be coming off my PPI in the next few days. Anyone else who takes anything come off their PPI and it's not been as bad as I'm thinking?

Tl;dr - Basically wondering what the likelihood of having stomach cancer if I've had h pylori and/or acid reflux symptoms (listed above) for 6 years+
What's the likelihood of PPI causing that much of a risk of stomach cancer?
Coming off of PPI for the two weeks prep for h pylori testing - were your symptoms manageable?

[Mindprison]

As someone who has taken PPIs for most of my life, here is my thoughts on these questions:

1. While it's true that helicobacter has been linked to an increased risk of stomach cancer. Here are some things to consider. 4 out of 10 people in the UK alone have Helicobacter. 1 in 3 of those MAY go on to develop stomach cancer. However, when you put together those facts with the knowledge that stomach cancer is actually rather rare, those numbers get a lot less scary. A third of the world's population has helicobacter, which is easily diagnosed and treated. And almost all of them never get cancer. When so many people have the infection, it becomes difficult to tell whether the infection is the problem or if it's just bad luck. Stomach cancer is listed as 16th on the UK list of cancer diagnosis each year, which means it is actually very rare, especially in young people. Almost all of those diagnosis are due to lifestyle factors that have built up over decades.

2. I know the article you are talking about, the NHS did a study where researchers tried to link PPIs to an increased risk of stomach cancer. The results were inconclusive. There was no evidence to suggest that the PPIs were the cause or if other factors were involved. Long term use of PPIs were only linked to 4 additional cancer cases in every 10,000 people. What this means is that the risk is still ridiculously low. A small increase in risk in a risk that is already low, still means it's a very low risk. The NHS and experts have concluded that people on PPIs should not be afraid of the study as the results were so minor and too many factors were involved that it didn't prove anything.

3. When I had my endoscopy done to test for ulcers, I came off them for 2 weeks. While the symptoms were unpleasant and painful, they were not agonizing. I used gaviscon to ease the symptoms until I was allowed to take omeprazole again.

Again, don't worry about stomach cancer, the NHS have deemed the risk to be extremely low even with minor risk increases.

[poppy77]

How old are you?

The symptoms you mention are the typical ones for acid reflux. What were your symptoms when you got put on a PPI? Have they ever completely improved your symptoms. I get the impression that your IBS is causing the reflux in some way, from what you've mentioned. I'd discuss this with a doctor.

As for hpylori, once diagnosed, it's simply a combination of antibiotics and ppis. Some people have hpylori there whole lives and only get diagnosed later on in adulthood. I wouldn't imagine many get stomach cancer because of it as it's relatively rare. It does raise risk factors but not considerably. You haven't even been told you have it! You may not even have to worry about it. Also your symptoms only started 6 years ago.

When is your test? If you have time, gradually wean yourself off rather than cold turkeying it as you could end up with acid rebound effect which some find unbearable.

[LuSmith]

As someone who has taken PPIs for most of my life, here is my thoughts on these questions:

1. While it's true that helicobacter has been linked to an increased risk of stomach cancer. Here are some things to consider. 4 out of 10 people in the UK alone have Helicobacter. 1 in 3 of those MAY go on to develop stomach cancer. However, when you put together those facts with the knowledge that stomach cancer is actually rather rare, those numbers get a lot less scary. A third of the world's population has helicobacter, which is easily diagnosed and treated. And almost all of them never get cancer. When so many people have the infection, it becomes difficult to tell whether the infection is the problem or if it's just bad luck. Stomach cancer is listed as 16th on the UK list of cancer diagnosis each year, which means it is actually very rare, especially in young people. Almost all of those diagnosis are due to lifestyle factors that have built up over decades.

2. I know the article you are talking about, the NHS did a study where researchers tried to link PPIs to an increased risk of stomach cancer. The results were inconclusive. There was no evidence to suggest that the PPIs were the cause or if other factors were involved. Long term use of PPIs were only linked to 4 additional cancer cases in every 10,000 people. What this means is that the risk is still ridiculously low. A small increase in risk in a risk that is already low, still means it's a very low risk. The NHS and experts have concluded that people on PPIs should not be afraid of the study as the results were so minor and too many factors were involved that it didn't prove anything.

3. When I had my endoscopy done to test for ulcers, I came off them for 2 weeks. While the symptoms were unpleasant and painful, they were not agonizing. I used gaviscon to ease the symptoms until I was allowed to take omeprazole again.

Again, don't worry about stomach cancer, the NHS have deemed the risk to be extremely low even with minor risk increases.

Thanks so much for your response, it really helps to get a viewpoint of someone who also has been on PPI's! I imagine stomach cancer is quite rare and my brain does tend to spiral into the 'what if' territory but I also know a lot of my symptoms are very common for people who suffer with acid reflux etc. I guess the likelihood of being on the PPI can't have increased my risk anymore than not taking anything would have. I have to consider that it's a very low risk. I think I'll feel better once I get results of h pylori and if I manage to get an endoscopy eventually and figure out what is causing my symptoms. Being on this medication without any indication of what I have is what causes me to work myself up over it, so if there's any way of being able to figure out what is the best course of medication for me for treatment then I probably will be less anxious over it as a whole.

I just need to get my head around the fact that alot of my symptoms aren't particularly indicitive of stomach cancer and that it's likely lots of people have h pylori and don't get stomach cancer at all. It's a relief to know that the risk is still relatively low.


How old are you?

I just turned 33 in December.

The symptoms you mention are the typical ones for acid reflux. What were your symptoms when you got put on a PPI? Have they ever completely improved your symptoms. I get the impression that your IBS is causing the reflux in some way, from what you've mentioned. I'd discuss this with a doctor.

My symptoms before I got on the PPI were mainly pain between the shoulderblades and breasts, stomach discomfort, nausea, dyspepsia. The symptoms did calm down for a while, I still got the hunger pains if I didn't eat little and often (I still have that), and I got a little bit of reflux now and then which I would take gaviscon on top to help calm the symptoms. They did originally try to reduce my dose to 15mg but my symptoms worsened so they increased it again and I've been on 30mg again for about 5 years straight. I only had the vomiting before when I forgot to take my dose or when I was just starting to take it, but over the last few years the vomiting has been irregular but happens (sometimes once a month, sometimes I go 4 months without it happening) I do wonder whether it has something in connection with my IBS though as I do find my symptoms alleviate when I've managed to have a bowel movement (usually after throwing up) and things have calmed down.


When is your test? If you have time, gradually wean yourself off rather than cold turkeying it as you could end up with acid rebound effect which some find unbearable.

I figured I might do this but was worried the longer I left it the worse the h pylori would get. I was worried it would progress into something after having it for some time if that's the case. I don't have a date for a test, I'm just gonna give in a stool sample when I've had 2 weeks off of my PPI so as not to ruin the test results. I'll take into consideration weening off though maybe every other day or every third day so that I don't get too much acid rebounding.

[Mindprison]

Glad to be of help, for most people long time or lifetime use of PPIs is discouraged mainly due to them making it difficult for your body to absorb things like iron, calcium and so on from the food you eat. I have to get my blood checked every 6 months due to recurring iron and folic acid deficiencies.

However, sometimes there just isn't an option and it's better to take it for a long time than have to put up with the agonizing symptoms that can occur. Even on 40mg I still sometimes get issues and have permission to go up to 80mg for a week.

I have no doubts that in the future, more treatments will become available for it but until then, i'm happy enough to just take the meds.

Also take solace in knowing that you haven't been diagnosed with Helicobacter yet, so there's every chance that this may just be severe reflux like mine is. I was tested for helicobacter 5 times in the space of 10 years and every time it came back negative. The surgeon told me I was just one of those cases where my stomach produced too much acid regardless of what I did or ate, to the point it melted the flap between my throat and stomach beyond repair.

It's not really put much of a dampener on my life though to be honest, it's managed quite well by the meds and I just have to be careful with what I eat. Garlic is my nemesis. :D

[LuSmith]

Glad to be of help, for most people long time or lifetime use of PPIs is discouraged mainly due to them making it difficult for your body to absorb things like iron, calcium and so on from the food you eat. I have to get my blood checked every 6 months due to recurring iron and folic acid deficiencies.

However, sometimes there just isn't an option and it's better to take it for a long time than have to put up with the agonizing symptoms that can occur. Even on 40mg I still sometimes get issues and have permission to go up to 80mg for a week.

I have no doubts that in the future, more treatments will become available for it but until then, i'm happy enough to just take the meds.

Also take solace in knowing that you haven't been diagnosed with Helicobacter yet, so there's every chance that this may just be severe reflux like mine is. I was tested for helicobacter 5 times in the space of 10 years and every time it came back negative. The surgeon told me I was just one of those cases where my stomach produced too much acid regardless of what I did or ate, to the point it melted the flap between my throat and stomach beyond repair.

It's not really put much of a dampener on my life though to be honest, it's managed quite well by the meds and I just have to be careful with what I eat. Garlic is my nemesis. :D

Ah, that's a fair point actually, as recently I was diagnosed with low B12 and folate and am gonna be retested in a week or so to see if it's still low. I had to have B12 injections a few months ago and have been on folic acid, but it is a small price to pay for managing symptoms that could be much worse! I did wonder though why my B12 was so low until I realized that the likely cause was the PPI!

I'm hoping it's not helicobactor and just a case of severe reflux. It sucks that you have it so bad that it's caused that kind of deterioration though! I still have to figure out what foods make me feel worse. I know that I feel bloated with some foods, but I put that down to IBS a lot. I think spicy foods definitely make things worse for me, as well as tomato and tomato based dishes. Hopefully not being tested immediately right away for h pylori (as I have to ween off the tablets first and then give in the sample) won't mean anything bad will come off it. I guess it's been this long already, whats another few weeks? It's just the not knowing, it's probably better for me to see a gastro again at some point and get the dreaded endoscopy but I've never really considered it before now properly!

[Mindprison]

Ah, that's a fair point actually, as recently I was diagnosed with low B12 and folate and am gonna be retested in a week or so to see if it's still low. I had to have B12 injections a few months ago and have been on folic acid, but it is a small price to pay for managing symptoms that could be much worse! I did wonder though why my B12 was so low until I realized that the likely cause was the PPI!

I'm hoping it's not helicobactor and just a case of severe reflux. It sucks that you have it so bad that it's caused that kind of deterioration though! I still have to figure out what foods make me feel worse. I know that I feel bloated with some foods, but I put that down to IBS a lot. I think spicy foods definitely make things worse for me, as well as tomato and tomato based dishes. Hopefully not being tested immediately right away for h pylori (as I have to ween off the tablets first and then give in the sample) won't mean anything bad will come off it. I guess it's been this long already, whats another few weeks? It's just the not knowing, it's probably better for me to see a gastro again at some point and get the dreaded endoscopy but I've never really considered it before now properly!

I panicked when I first got told I had low iron and folic acid. Since i'm a male the most common reason for that is gastro bleeding. It wasn't until I mentioned to my GP that I was taking a lot of PPI medication that it clicked for him and he told me that was probably why it was happening and not to worry about it.

It can feel like a long road sometimes but it will get better. Once you know for sure what you're dealing with and start working out what triggers it and what doesn't, you'll be in a much better position.

[budgie1979]

Do think about asking for an endoscopy or a barium swallow if you've never had one. It's possible you have a hiatal hernia, which is what I have. Mine is small, but causes pretty bad reflux (the anxiety doesn't help). It's possible to get a hernia surgically corrected, but that's a procedure that has its own set of issues, so most people are content just staying on the PPIs to treat the symptoms. I'm currently trying to wean down to 20mg of omeprazole from 40mg, because my GI doc would prefer I try to manage with just diet, and it's not going as well as I'd hoped (I'm not in severe pain or anything, just definitely noticed an increase in the typical reflux symptoms). Keep some Gaviscon and/or chewable antacid tablets on hand to help you manage (if you're allowed to take those).

[LuSmith]

Do think about asking for an endoscopy or a barium swallow if you've never had one. It's possible you have a hiatal hernia, which is what I have. Mine is small, but causes pretty bad reflux (the anxiety doesn't help). It's possible to get a hernia surgically corrected, but that's a procedure that has its own set of issues, so most people are content just staying on the PPIs to treat the symptoms. I'm currently trying to wean down to 20mg of omeprazole from 40mg, because my GI doc would prefer I try to manage with just diet, and it's not going as well as I'd hoped (I'm not in severe pain or anything, just definitely noticed an increase in the typical reflux symptoms). Keep some Gaviscon and/or chewable antacid tablets on hand to help you manage (if you're allowed to take those).

Thanks, I'm nervous about getting an endoscopy done but I think at this point it's best just to find out what is actually causing the acid and stuff. I know of couple people with hiatal hernias so I guess it could be likely. I hope you manage to wean yourself down, it's not easy dealing with the symptoms especially after lowering your dose! I do try and take chewable gaviscon tablets where possible but they don't work as well as I would like them to!