Bile reflux in PA

[Wierdorwhat]

Hi everyone,

I haven't posted for a long time and I hope you are all as well as you can be. My apologies for the long post.

I think the title may be somewhat simplifying my questions but it is, in essence correct.

I am currently struggling (not due to obtaining my B12 ampoules regularly enough) but with a consequence of a rare resultant manifestation of this illness. In a nutshell I am one of the very few people who have gastric neuroendocrine tumours (NETs) as a result of the combination of conditions affecting my stomach (pernicious anaemia, destruction of parietal cells and autoimmune atrophic gastritis being three of them). NETs can be found pretty much anywhere in the body and are cancer [Admin edit - pre-cancerous not cancer], and all are capable of metastasizing ( even though most of them are slow growing), this again, however is not why I am struggling, I mention it here for background information. As prescribed by my NET specialist, and, due to low ferritin levels, I am currently supplementing with iron, which has caused terrible pain in my stomach, heartburn (not acid related as I have achlorhydria - very low, or not existent stomach acid - but bile related), and extreme nausea.

My questions are:

1.Has anyone else here experienced bile reflux/heartburn, and if so how did you treat it? (Due to the low acid state I have been told I must never take PPI's again).

2. For those of you who take iron supplements, what causes you the least problems digestive system wise?

3.If any of you also have a very low acid state in your stomach, how do you address this? (I asked my NET specialist about lemon juice and apple cider vinegar and he said they won't help and would probably make me feel ill).

4.My digestive system is obviously compromised by all of this - are any of you in a similar boat and how do you address this?

I realise that this is a somewhat rambling post, and I hope you can make some sense of it, thank you very much for reading it.

P.S. I have stopped taking my iron pills today as the stomach pain is severe - can't get to see the GP until after the Bank Holiday.

[clivealive Forum Support]

Hi Wierdorwhat personally I have been prescribed 1 – Iron Ferrous Fumarate 210mg tablet every day for more years than I can remember and prior to the was on ferrous gluconate for even longer. I am also on a PPI (curently Lansoprazole) and again have been prescribed one sort or another for between 25 to 30 years.

If i feel in "danger" of an acid reflux I take Gaviscon.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

[Wierdorwhat in reply to clivealive]

Thanks Clivealive, unfortunately it's not acid reflux, it's bile reflux and I've been told not to take PPI's by my NET specialist as I have very little stomach acid as it is - thank you for your reply and support though, glad you are doing ok.

[Gambit62 Administrator]

Wierdorwhat - this forum is not a substitute for professional medical advice.

Personally I do suffer from bile reflux on occasion and find that lime juice in water is the most effective way of resolving the problem. However, that is not being done under medical advice.

This is obviously a serious issue with you. If you are unhappy with the advice you are currently being given you are entitled to ask for a second opinion. It is possible that a pharmacist might also be able to suggest something appropriate.

[Wierdorwhat in reply to Gambit62]

Thanks Gambit62, I understand that this forum is not a substitute for medical advice as I've posted here a good number of times before, but I know you need to bring it to everyone's attention due to the thorny problem of misplaced advice being taken as bona fide and other issues; however I was in the situation of bank holiday closures and the late hour so I just thought I would see if anyone had any suggestions as to what might alleviate the pain.

I stopped taking the iron tablets 3 nights ago and my symptoms have gone now, but, thank you for your concern for the seriousness of my problems and I will be visiting my GP tomorrow and also contacting my NET specialist now that the bank holiday is over.

The lime juice is something I will look into - I like to research everything thoroughly before embarking on a course of action. Thank you once again for your comments.

[flosslechops]

for iron to work it needs to be balanced by zinc and copper-try the chelated forms of these(bisglycinate)they are normally referred to as 'gentle' on the packaging,i get stomach pains on the other forms of iron but the bisglycinate is great

[Wierdorwhat in reply to flosslechops]

Thanks flossiechops, I'll ask my GP tomorrow about the chelated (bisglycinate) forms of iron tomorrow, though I suspect they are not available via the health service; I certainly need a different form though as my symptoms have gone after 3 days of being off the Ferrograd.

I didn't know about the zinc and copper either so I'll have to do some research on that score. Thank you again.

[flosslechops in reply to Wierdorwhat]

I agree,think the best you can get from gp is fumerate version

[Mx143]

Hi I have discovered a neuromuscular device made in Sweden by a company IQoro.com its expensive but works for reflux and dysphagia its amazing I used it 3 times a day. Its on prescription in Sweden but not over here.

[Wierdorwhat in reply to Mx143]

Thanks Mx143, I'll look into that.

[Annkapp]

Have you tried taking Betain HCL and Pepsin with meals (especially meals with protein) to increase your stomach acid? Increasing stomach acid with help you absorb food and supplements such as iron. Google how to determine how much HCL and Pepsin you need.

[Annkapp]

Here is a link on how to use Betain HCL and Pepsin.

healthygut.com/articles/how...

[Wierdorwhat in reply to Annkapp]

Thanks for that advice Annkapp. I've heard that people take betaine hcl before, but not the pepsin, I'll research both of them now. Thanks for your help.

[Annkapp in reply to Wierdorwhat]

Pepsin should always be taken with HCL (if memory serves me right).