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Bile acid malabsorption

Posted , 6 users are following.

emma15794
emma15794

So after a secat scan I was diagnosed with bile acid malabsorption, my retention rate was 6.3%. 

I was given colesevelam to help manage it which I have only just taken today. I had a bad episode this morning so had my breakfast and took the tablet. The problem was it stopped the diarrhoea but I still had the pain and the feeling I needed to go, cold sweat and desperate to go like I normally do without the tablet. Has anyone had any experience of this? Also when it started I hadn't eaten anything just drunk some fizzy water (about quarter of a bottle in an hour) does it matter that I hadn't eaten?

i feel tired all the time, keep going dizzy and have started to feel depressed, last time this happened it turned out I was vitamin deficient once I took supplements I felt a lot better but this time my levels were fine.

im just looking for anyone who has a similar problem who can advise on how you manage it. Oh and I have sphincter of odd I on top of this and am due for a HIDA scan next week cry

1 like, 16 replies

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  • j75920
    j75920 emma15794

    Posted

    Gosh I can sure relate.  You know sometimes you just gotta wonder if all the damned pills that we're prescribed are really doing good or not.  I was on Nexium for years and have now been reading that there is some reports out that say there is cause to be concerned with it having something to do with Dementia.  So, I asked my dr and he took me off and put me on Zantac, which is not doing any good at all.  So now what?  And all the side effects of both pills are just too long to mention.  So what do we do?  Inasmuch as I take a couple of Chinese pills for my gall bladder and they do seem to help, I'm going to go online and see if I can't find something for my stomach.  At least with them, they are natural.  Sorry I can't help - guess we're all in the same boat.
    • emma15794
      emma15794 j75920

      Posted

      Yeah all those pills can't be good for us! I asked my doctor what to do if I got constipated with the tablets...he said take laxatives....I asked if that would be the same as taking uppers and downers 🤔 I just try and muddle through best I can
  • j75920
    j75920 emma15794

    Posted

    At my age, 79, I'm hoping to not have any surgery, to try and just get through it all.  But at the same time, after years and years of all this pill stuff, who the hell knows?  So, agree, just muddle through as best you can.  Take care.
  • lynda20916
    lynda20916 emma15794

    Posted

    Hi, Emma, I hope I can help.  First, it may take as much as 72 hours before you feel relief.  It takes about 72 hours for your gut to process the food you just ate generally, unless you have an allergy or food poisoning. A fact I just learned is your small intestine is about 21 feet long, and your colon is about 7, if they are both intact.  That's a long way to go. I take cholestyramine, but my dosage instructions are for the night before.  I would suggest that unless your instructions are to take the medication and then eat, that you take the medication first with 8 oz of plain water, and then, wait a half hour or an hour to eat. Right now, it appears that your gut is "doing what comes naturally" to you, so it may take some time for your gut to breathe a sigh of relief when the drug does take effect.  Don't give up or lose hope.  For me, this problem has been devastating at times, too.      wink
    • emma15794
      emma15794 lynda20916

      Posted

      On the bottle it says I have to take with or after food rolleyes I just wondered why I had an episode when I hadn't eaten, I know Diet Coke can set me off so I stopped drinking it.

      the first doctor I saw said I couldn't have BAM because I mentioned occasionally I can be constipated, but I thought that's how it goes? I don't know I'm generally just confused and fed up

    • lynda20916
      lynda20916 emma15794

      Posted

      You're right, you can have constipation, too.  So, if you have to take with food, cross your fingers and wait 72 hours.  Also, you should know that Diet Coke or any sugar substitute is not good for you; causes more digestive problems.  We can get coke made in Mexico where I live, and it's made as it used to be with sugar.  I limit myself to 5 ounces a week, with ice.  Tastes like champagne to me now!  So avoiding high fructose corn syrup if you can, it's in everything, including regular coke could help you, too.  If you wish, you can keep a food diary, that includes how and what you excrete and how you feel.  Then, you can keep track of that pesky 72 hour window and perhaps see a little cause and effect.  Take care!  wink
  • sandynan
    sandynan emma15794

    Posted

    Hi Emma I suffer from the same thing and have for 4 years! I was told to take Colesevelam plus Imodium I have taken 8 imodium in a day when it's been bad Colesevelam binds the bile which does help but you certainly need the imodium as well! I was also told by my consultant to stop taking Omprazole and Pantoprazole because the side effects from them is Diorhea! the one he told me to take is Ranitidine 300mg. They are very good for acid reflux. Give the Colesevelam a chance love but if you are feeling really ill see your GP.     
    • lynda20916
      lynda20916 sandynan

      Posted

      Yep!  Good advice.  You might want to try Cholestyramine.  It's nasty tasting and inconvenient, but when I do, no big D.  You can also take Prilosec, if you can get it over the counter there.  
    • emma15794
      emma15794 sandynan

      Posted

      I wondered if my lansoprazole could be causing it but I came off it for a bit to test and I was still getting it. The acid I get is ridiculous now, I never suffered with it before my gall bladder removal!
    • lynda20916
      lynda20916 emma15794

      Posted

      Getting rid of your gallbladder, especially if it is diseased and not functioning is better than trying to keep it in your body, I think.  But I think everything one does has consequences, not all of them anticipated or pleasant.   
  • emma15794
    emma15794

    Posted

    What I also don't understand is, sometimes I can eat something and it sets everything off, but other times I will be fine, and other times I can have something that I think will set things off but doesn't. It makes it so hard to try and manage food wise. 

    I was was living on porridge for a time but it got really boring. I just try and stick to low fat as much as I can but you gotta  have nice things now and then!

    does anyone have any examples of what sets you off and what to avoid?

    • lynda20916
      lynda20916 emma15794

      Posted

      What sets me off is fat, and too much dairy.  So, I can have tea with a bit of milk, but not much more.  Broccoli and cauliflower and canned peas.  
    • emma15794
      emma15794 lynda20916

      Posted

      Yes I can't cope with dairy or eggs. White bread is a no go unless it's that really thin Danish you can get. Pancakes, sometimes spicy stuff and greasy things. 

      Although my my body can't make its mind up sometimes I could have these and be ok??? 

  • j75920
    j75920 emma15794

    Posted

    Well it's going on almost a week now, everything I eat turns to acid.  You know, I'm just not sure if it's the gall bladder or just acid reflux.  After coming off of Nexium and then going on Zantac, both never helped, I've started with some Chinese pills.  They're about as good as the Nexium and Zantac.  Still with the acid, just awful.  At this point I guess the only thing I can say is other than the acid pain, I don't have actual pain pain - you know what I mean?  Lots of belching, tho'.  Just don't know what to do.  Can't get into a dr. for a month - do you believe that?  I've altered what I eat, mainly cause nothing taste good.  The only good thing is that I've dropped 3 lbs.  Anybody, suggestions?
    • lynda20916
      lynda20916 j75920

      Posted

      Oh, my gosh, how awful to have to wait.  So frustrating--well, you might try calcium pills to absorb some of the acid.  And, it has to be calcium carbonate, take one or two before each meal.  Or, you might want to consider that you could be gluten intolerant.  I used to feel as if I was looking at a very short list of what I could eat, and stuff kept getting crossed off the list, but it  would change.  I tried magnesium pills, but it just gave me D.  If you have BAM, you'll see lots of yellow bile in your stool, or it may be backing up into your stomach.  I think that bile's released into the small intestine.  But you might have it creeping up into your stomach.  Good luck! 
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