Crohn's Disease Forum » Support Forum » Bile Acid Malabsorption Support Group


 
07-06-2017, 02:15 PM   #151
highlandsrock
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Just found this thread... that explains why my anus burns 2-3 times a week! All this started after resection/terminal ileum and removal of gall bladder both at same time in 2011 (oy did that hurt).
Were you warned before surgery that loss of terminal ieum means it is pretty much a certainty you will end up with BAM? I was told but not in terms I took on board. I explain it here - http://www.wrestlingtheoctopus.com/d...-not-that-one/
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07-07-2017, 08:39 PM   #152
The Real MC
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were you warned before surgery that loss of terminal ieum means it is pretty much a certainty you will end up with bam?
nope
07-28-2017, 06:19 PM   #153
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My colon cancer surgeon told me I wouldn't even miss the 2 feet of small & large intestine he was removing.
07-28-2017, 07:21 PM   #154
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I was told that I would need B-12 shots for life, but that was it.
07-31-2017, 03:15 PM   #155
highlandsrock
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I see so many other sufferers saying exactly the same - "nobody told me about bile acid". I don't know why it's not mentioned as a matter of course when you are going to have your terminal ileum removed. We need a BAM Awareness Campaign to run alongside the IBD Awareness activities
08-01-2017, 08:15 AM   #156
ronroush7
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I don't remember being told anything about them taking the terminal ileum or anything about bile acid.
08-03-2017, 01:55 PM   #157
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I started taking Cholestyramine powder daily about a month ago. For the last week, I've had really strong pain under my right shoulder blade. I know this can be a symptom of gall bladder problems. Might it have anything to do with BAM or the medicine?
08-03-2017, 09:32 PM   #158
ronroush7
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I would let your doctor know what is going on, woodlandperegrine
08-04-2017, 12:21 AM   #159
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Thanks, ronroush7. I came to the same conclusion and made an appointment for tomorrow.
10-09-2017, 12:19 PM   #160
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Part of my bm was milky. Does this mean there is a problem with the bike acid? What does that mean?
10-12-2017, 04:45 AM   #161
Spooky1
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Mines generally green with bile malabsorption.
10-12-2017, 10:24 AM   #162
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I have had 2 terminal ileum resections. I take half a pack of Cholestyramine powder daily with OJ. One pack bound me up too much. Also take a B12 (1000mcg) pill daily. Have a blood test every 2 months. Down to 1 BM a day, happy guy.
11-30-2017, 02:26 PM   #163
DEmberton
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Hi there,

After my surgery 3 years or so ago I was told about BAM, but nothing happened about it as I wasn't really getting diarrhoea I never thought it was something to worry about. I moved this year and it seems here in Yorkshire the NHS take things a little more seriously; the consultant ordered a whole load of blood tests (including things like Vitamin D I'd never been tested for before, all fine), as well as for the first time a stool sample (urgh), a bone density scan and the SeHCAT test even though I assured her I don't have diarrhoea so can't have BAM.

Sure enough, my "retention is 5%" putting me in the severe category.

It makes me wonder how much the on-off mild symptoms I've had over the last 3 years were BAM and not so much the Crohns fighting back.

I now need to get a prescription for Cholestyramine.
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11-30-2017, 03:40 PM   #164
emmaaaargh
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Atypical presentations of BAM really interest me - I've always wanted to know if it has to appear immediately after surgery, or can develop later, or can be "in hiding" and can only show itself later. I had surgery in 2009 but up until about 2015 I would have perfectly solid stools (when my guts were doing well, anyway) but since then my stools have just been mushy at best, and nothing I eat, or no matter how I feel otherwise, seems to affect it, except that fat definitely worsens it. I've always wondered about the possibility of BAM, but so far it's never been raised to me.
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11-30-2017, 03:58 PM   #165
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I think, I ain't a GI, if you have BMA of bile salts, causing diarrhea there is nothing you can do, thru diet, to get your gut to absorb much more bile salts. All you can do is use Cholestyramine to bind with the bile salts, thus not allow the bile salts to cause your Large Bowel to excrete water vs absorb it as normal.
or use Loperamide to slow down the gut mobility and try to force more bile salt and water absorption.
12-01-2017, 02:35 AM   #166
ron50
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I use questran lite (cholestyramine) When I have a flare of bile salt diahorreah . When I get it under control it usually stays controlled until I accidently eat or drink something that causes another flare . I sometimes go months without needing to use questran. I don't like to use it all the time because I have severe peripheral neuropathy in my feet and legs from chemo and colon cancer in 1998. My doctors now believe the neuropathy my be effecting some of my organs including my remaining colon interfering with motility. I am suffering increasingly from constipation , so I only use questran when I have to. My bam was caused by gall bladder removal. Ron.
12-01-2017, 07:39 AM   #167
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I've changed back to Questran Light from Colesevelam. I couldn't take medications 4 hours before or after the Colesevelam so it interfered with all my meds. I had to take the Colesevelam 3 times per day. I can take meds an hour before Questran and 4 hours after so i'm hoping all my other meds will work better. I too have a problem with BAM and Questran helps better for me. I'm certainly pleased to be back on Questran.
02-22-2018, 12:58 AM   #168
Lynda Lynda
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I have been taking 2 Cholestyramine Packets a day for probably 13 years. If I do not take the Cholestyramine I get very sick with yellow watery diarrhea, nausea and vomiting and sometimes dry heaves. I have had to adjust / lower my dose occassionally when I was actually having issues with constipation. I have never been told I have BAM.
02-23-2018, 10:45 AM   #169
Spooky1
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Sounds a lot like you have BAM, Lynda. Just out of interest does your brand have aspartame in it?
03-07-2018, 10:08 AM   #170
n00b
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Hi all

Has anybody got any experience with Cholestagel tablets?

I have been on Questran for a while, on/off and it seems to work OK however the stuff just makes me feel sick as a dog after drinking that slop!
03-07-2018, 10:49 AM   #171
Spooky1
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Hi, is that also called Colesevalam? I took those tablets but I wasn't allowed to take medications for 4 hours before taking them nor 4 hours after. That was me stuffed. Back to the questran. I can swig that back easily enough. Takes about 10 secs and swig a bit of clear tea/coffee afterwards.
03-14-2018, 10:54 PM   #172
Lynda Lynda
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I've been taking cholestyramine powder for 13 years and it has a disgusting taste and texture. I will have to check the label to see if it contains aspartame. I never eat anything with sweeteners made from sugar alcohols because those sweeteners can cause diarrhea, such as Mannitol and sorbitol and Xylitol Etc. I don't like artificial sweeteners even though sugar isn't the greatest thing to eat either. Take care and hope you all feel better.
03-20-2018, 07:07 AM   #173
ron50
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One of the things that my doctor did suggest to me when taking questran lite was that he thought it was almost mandatory to brush your teeth after taking questran. It can cause enamel damage. I found by brushing afterward I got rid of the taste and the grit. Ron.
03-20-2018, 12:32 PM   #174
Lynda Lynda
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Yes, brush your teeth afterwards ! Yeah, I have to have a pretty rigid medication schedule because the Questran can inhibit the absorption of medications and I take several medications every day. For example : Morning medications, wait 3 hours, Questran, wait 3 hours, afternoon medication, wait 3 hours, Questran, wait 3 hours, bed-time medications. ( Yikes )
03-20-2018, 01:08 PM   #175
Spooky1
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Questran needs to be taken 1 hour after meds and no meds for 4 hours afterwards as it says on my info sheet.

Ron, that's what knackered the enamel on my teeth! The teeth were disgusting I paid for veneers which lasted 11/12 years. Now I got partial dentures. Thought it was the steroids.
03-20-2018, 05:28 PM   #176
ronroush7
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Sometimes I get hungry soon after eating. Is this connected to bile acid malabsorption?
03-21-2018, 05:22 PM   #177
Spooky1
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I do think that bile malabsorption does carry things through faster. I am the same. Mind, i also have phases of Gastric Dumping Syndrome. Nothing stays in long then.
03-21-2018, 05:33 PM   #178
ronroush7
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I do think that bile malabsorption does carry things through faster. I am the same. Mind, i also have phases of Gastric Dumping Syndrome. Nothing stays in long then.
Thanks

03-21-2018, 05:45 PM   #179
Lynda Lynda
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Gastric Dumping Syndrome ? Yikes, I think I had that at 3pm today !
03-31-2018, 03:04 AM   #180
Lynda Lynda
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Mines generally green with bile malabsorption.
Mine is yellow-ish.
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