Can anyone tell me if bile is the same as stomach acid?

I was diagnosed with PBC just under 12 months ago and still feel very confused about the whole thing. I do have other health problems which include excess stomach acid, reflux and a hiatus hernia. I thought that PBC would reduce the bile getting through to the stomach, however slightly, so why do I suffer so badly with excess acid (I am taking medication for these stomach problems - Rabeprazole being an antacid type drug.) Sorry if I have rambled I have only just found this site and want to ask so much. My husband is very supportive but like me he doesn't know very much, only what we read on the PBC Foundation site, which tends to be very factual rather than anecdotal. Thanks for reading.

[Hidden]

Hello Greensphere.

I never suffered with heartburn prior to 2010 the year of diagnose PBC and when I started on urso for a few months following I had dreadful heartburn of an evening. It vanished within a few months along with a bit of bloating too. I have since had different urso tablets twice and each time had temporary heartburn that then vanishes.

Now stomach acid and bile are not the same. Bile is needed to break down fats in particular as it acts like a detergent in breaking it up. Bile is usually made in the liver and then stored in the gallbladder but with PBC due to our bile ducts being under attack the bile does irritate the liver as it is apparently the most toxic substance in the body that we produce. The liver also breaks down used bile after digestion and it can be recycled. Used bile that is expelled is part of faeces. (In PBC apparently you can have pale stools due to lack of bile.)

Taking urso which is a component of what makes up bile is thought to improve bile flow through our system, add more and aid better digestion. Apparently with PBC you can't actually overdose with urso though we'd not intentionally do that anyway but any excess is normally passed out via the faeces.

Can I ask when you take your urso? There is apparently no hard fast rule of taking them. Some take them all at once of a morning, others all at night and some spaced out during the day. I originally took mine with breakfast and the last tablet around 9p.m. I switched to with the evening meal for the last as I thought that might have added to the heartburn in the evening due to it being several hours prior to eating.

I have tried other ways of taking the urso but found that for me taking them all at once in a morning, that caused me to start itching mid-morn (I'm a night time itcher) so to me that wasn't a good thing. I tried chopping one of the 300mg tablets when I had them (these were withdrawn July so now I have 4 x 150mgs per day which I take 2 twice a day), took one 300mg with breakfast, took half (150mgs) at lunch and the other half (150mgs) but found for some reason I didn't think that was helping.

Heartburn I have heard can be a sympton of PBC and I know it's not a nice thing to have. A tip is that you should avoid lying down for a couple hours after eating, this should help somewhat. Certain foods can be of some help in sort of diluting stomach acid, oranges are apparently one believe it or not. Too much fat in the diet or a fatty meal as a one off can also cause heartburn too as more acid is needed to break it all down.

[GrittyReads]

Hi Greensphene,

Peridot is right. Bile and stomach acid are very different things, in different places. The acid is produced by the stomach when you eat food, as it kills off (most) bacteria etc. that could harm us and might be in the food. The acid is also needed because the digestive juices that are added to the food in the stomach work better in an acid situation. Bile is not added to the semi-digested food until the food has left the stomach, and moved onto the first part of the small intestines. Bile is made in the liver (and has some waste stuff added to it that the liver wants to get rid of) and the bile then all collects in the gall bladder, which is a separate little storage pouch hidden in the liver. When food comes through from the stomach, the bile goes down a duct from the gall bladder to go into the intestines, so as to be mixed with the food just coming along from the stomach. As Peridot says, the bile helps break up the fats we have eaten.

I know the PBC F explanations can be a bit technical, but I guess they have an obligation for it to be 100% factually accurate. The trouble with some of our anecdotal stuff is that it may be being caused by other conditions, or medications ... while some of may just have got it wrong. Why not google simple searches about the liver, stomach, gall bladder, bile duct etc? There are some really good straightforward explanations online, and if you start with the easier ones - as I did - then eventually the more complex stuff, such as at the PBC F will make sense. I've found it helps to know your stuff when talking to GPs, nurses and consultants - especially when some of them hardly know anything about PBC.

I also think you should go back and see if you can get better help with the stomach acid, as that's obviously causing you distress that could be alleviated.

I hope this helps, good luck.

[Hidden]

Thanks to both Peridot and GrittyReads. I probably sounded a bit draft. At the moment I just feel bogged down with all the different information. I made the mistake of reading a site, I think it was American when I first got diagnosed. It frightened the life out of me saying the prognosis was 5 years from diagnosis! Didn't Google much after that.

I have had the problems with my stomach for about 10 years. After 3 endoscopies and a colonoscopy I was told that it was just a fact that I produce far too much acid. (At that point my stomach was very inflamed due to the acid). Since being on meds it is a better but I have started having pain and burning despite the meds at least 3 times a week. I have also been diagnosed with IBS and get a lot of bloating and pain. Again the meds did help but recently the bloating has been quite bad on a regular basis.

I also get pain in my knee joints and legs, shoulders, arms and hands and have bouts of extreme fatigue. I can cope with these things but never really know whether they are connected to the PBC so don't really bother talking about them to my GP or my Consultant.

At least I understand more about the acids now and will look on Google a bit more. Thanks again

[Hidden]

Hello again Greensphere.

You aren't sounding 'a bit daft' at all with regards to your posting and how you are feeling at present. I think now you know you have PBC then you can deal with it more adequately.

Though the internet can be good for finding things out, it can also be a scary thing too. I have in the past myself read certain things that seem to put the frighteners out but I just started to switch off. I think you have to resolve yourself into thinking that you can only deal with what you have now and forget about what may be ahead as it might never happen like that.

I can't help wondering if an alteration of your diet could perhaps alleviate the situation with regards to stomach acid and IBS for you. Maybe then you might be able to cut down or eliminate what medication you are on in the future.

It's said that eating little and often is a good thing if you have PBC. I know myself, long before I started to itch in 2010 I had naturally started to cut down on food myself. I find that I can really eat at breakfast and lunchtime but come the evening meal I have sort of tapered off and do not feel overly-hungry so I don't have a large portion to eat then. I also think eating should be balanced with what activity or work you have done in the daytime. I'm pretty active and don't seem to bother much anymore about counting things like calories. I do glance at the content as in fats for eg but I don't get paranoid due to the fact my weight has stayed the same since diagnose. I find with itching at night and fidgeting with it I reckon that is when some more of my energy is used up.

Now where the doctors are concerned I find that they only tend to concentrate on the symptons and how the bloods are as opposed to explaining things better than they could do. I sometimes think it can be a good thing to find out certain things yourself so that you can ask a question you may have. Joints that ache are not actually due to PBC but due to having PBC it has a knock-on effect with other functions so we can develop them. Vitamin D is thought to be less absorbed in PBC and that in turn has the knock-on effect with calcium. Certain fat soluble vitamins can be less absorbed in PBC too (A, D & K are these). Might be worthwhile asking your doctor if you are adequate in Vit D. I was said to be 'a bit low' back in 2011 but a couple mths later summer was approaching and I utilised the sun more and on the next check it was perfectly normal. The Vit D test can be done when you have your repeat bloods.

I know calcium tablets for eg can be a good aid if you have heartburn but I'd not recommend it as a daily thing unless you have been advised to take calcium. I have used calcium tablets bought cheaply (with Vit D added) as a one-off remedy for heartburn as I thought it better than buying OTC indigestion tablets. Be interesting now to find out if anyone on this site who has been advised by their doctor to take calcium whether they do get heartburn. Might be a question to post.

[Hidden in reply to Hidden]

Hi Peridot, thank you so much for this, I have an appointment with the Consultant on the 18th so I will make a list of the questions I would like to ask, also my husband is coming with me so he can help me get answers and ask any questions he has. Can he join this site as sometimes he would like advice on how to help me or talk to someone else who lives with a person with PBC. There does not seem to be much support for carers of people with PBC.

Cheers

[Hidden in reply to Hidden]

Hello yet again.

Of course your husband can join the site too. Think there is somewhere the top where you can register. You have to register really as some of the questions/posts re for members only so better to do so.

[GrittyReads]

Hi Greensphene,

I totally agree with Periodot. You are in no way sounding 'a bit daft'. The diagnosis you've had is scary, especially if it has not been carefully discussed and explained. I was an utter gibbering wreck for weeks after my (don't see her now) GP just 'told' me I'd probably got PBC - all without explaining what it was. It was six years ago, just before Xmas. I went home and googled, read stuff on online - eg 'progressive and incurable' - and then spent the whole holiday not telling anyone ('cos it was Xmas) while completely falling apart. After Xmas I saw someone else who explained it all so much more sensibly: eg. the touch of arthritis I may have is progressive and incurable, but I'll probably die of old age ... same with PBC for most of us. So don't put yourself down. We've all been there, which is why we try to look out for each other on here.

I suggest, for starters, just looking at the simple (eg NHS) guide sites about the body, online. So you can see all the internal positions of things, and learn a little bit more about the liver, gall bladder. Then you can progress until the PBC Foundation stuff gradually makes more sense. I'd also scroll through more of the Qs & As on here, as so many people know so much, and each new discussion usually adds a bit to the collective knowledge. I didn't know about the other liver scan test for PBC until I read about it on here a few days ago. Also, if you've joined PBC F, (I guess you have if you've got there folder) you can phone up and chat to people there. I didn't find out about them until about 6 months after my 'diagnosis' and I was lucky enough to talk to Collette when I was panicking about travel insurance, and she was brilliant.

Peridot has already covered much of the ground about your ibs, joint pains, etc. I just want to add that while some of those could be caused by other conditions, I think it's worth telling your GP. You should maybe have tests for vitamin and mineral levels and bone density, which can be affected by PBC, but it maybe that other causes not yet known could be sorted out. I had endometriosis until I had a mirena coil fitted. In my case, as well as bad period pains, it was causing both joint pains and ibs-type pains. It mainly all went after the coil was fitted, while yoga and the gym (get a weight-bearing, muscle strengthening, but gentle on the joints, programme), plus a bit of weight reduction has seen off the rest of the pain. I was also having a bad perimenopause, this can cause other symptoms - insomnia, headaches - common to PBC, but now the 'flushes' are solved, I'm fine.

Talk to your GP, and us, and PBC F, and try not to worry. Stay calm, cosset yourself, and keep planning a good future - it'll happen.

Take care xx

[Hidden in reply to GrittyReads]

Hi GrittyReads, Thanks for the advice and supporting words. I don't feel as much a hypochondriac as I was feeling. I am making a list of questions for the consultant next week and my husband is coming with me for support. I will let you know how I get on.

[Hidden]

PS Greensphere.

Check out the Liver North website, you can fill out online to request a free dvd all about PBC. I got one a couple years ago now and I didn't actually watch it the time it came but my husband did. I think the dvd is a bit better to understand, plain simple and informative. On the same site you can scroll down and read their latest newsletter which I do like reading (travel insurance that has been mentioned on here is also added each newsletter with what are at the time up-to-date companies who are willing to insure).

Here is the website for you to click on the link;_

livernorth.org.uk/index.htm

[Hidden in reply to Hidden]

Thanks peridot, I have been on the site and it is good.

[Hidden in reply to Hidden]

If you ever email the Liver North you will receive a reply. I asked them something awhile ago and got an email back from someone called Tilly.

The PBC Foundation will also contact you back by email if you have any questions as I have 'bugged' them a few times previously.