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05-12-2013, 10:53 AM   #1
TheGhirlEmma
 
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Bile Acid Malabsorption Support Group

About this Support Group

Hi,

I thought I would create this support group as I've not been able to speak to many people who have also been diagnosed with Bile Acid Malabsorption.

I thought we could share stories and provide support to each other.

Thanks.

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05-23-2013, 01:03 PM   #2
nogutsnoglory
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I tried Questran once for several weeks but saw no change. What have you been treated with? I wonder if there is a natural option. Ill need to do some research when I get a chance.
05-25-2013, 05:24 AM   #3
TheGhirlEmma
 
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Hi nogutsnoglory, I take it you've got bile acid malabsorption? It took the docs a year to diagnose me. I've only just been put on questran, but I'm in a bit of pain with it.
I'll need to give it a week or so then have a follow up apt.
06-02-2013, 12:01 PM   #4
Nrthngrl
 
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Imagine my surprise when I came across this post! I was diagnosed with Bile Malabsorption a year after my gallbladder was removed. It took a good Doctor to listen to me. I'm actually on two medications because even on Lodalis alone bile is visible in the toilet (TMI I know). After being prescribe Ursidiol I find things have evened themselves out a bit.
06-24-2013, 11:17 AM   #5
723crossroads
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Hi nogutsnoglory, I take it you've got bile acid malabsorption? It took the docs a year to diagnose me. I've only just been put on questran, but I'm in a bit of pain with it.
I'll need to give it a week or so then have a follow up apt.
I am on questran too, I don't have any problems with it other than you can get constipated sometimes. I vary on how much I take it. If I am having D I take it everyday. If I start noticing I'm not regular ,I cut back till it picks up again.
06-24-2013, 03:09 PM   #6
theo
 
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Hi,
Like you I am a bile acid malabsorption victim too. The reason is not clear; no surgery. Most of my diarrhea is in the morning with occasionally a serious and painful bout in the evening.
By chance I found that a good piece of brie or camambert cheese before bedtime solve my problem. The fat in the cheese likely binds the bile preventing irritation in the colon.
Does anybody have a similar experience or willing to try? More tasty than questran!
06-25-2013, 12:46 PM   #7
723crossroads
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Hi,
Like you I am a bile acid malabsorption victim too. The reason is not clear; no surgery. Most of my diarrhea is in the morning with occasionally a serious and painful bout in the evening.
By chance I found that a good piece of brie or camambert cheese before bedtime solve my problem. The fat in the cheese likely binds the bile preventing irritation in the colon.
Does anybody have a similar experience or willing to try? More tasty than questran!
I don't mind the questran and it really has helped me so mcuh. It keeps my bum from burning!
07-20-2013, 02:44 PM   #8
alisonwilkinson
 
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Hi ive just got a letter today stating to go for a sehcat scan. I didnt even know about this scan until today. My doctor didnt even tell me which as peeved me off a bit. I have done a bit of research and ive found out its for bile acid malabsorption.

Alison
07-20-2013, 09:47 PM   #9
DustyKat
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Both of my children suffer with bile salt malabsorption diarrhoea due to ileal resection.

Sarah always had a bigger issue with it as her resection was far more extensive than Matt's. Sarah had 68cm of bowel removed, 59cm of ileum and 9cm of caecum. Matt had 28cm of bowel removed, 20cm of ileum and 8cm of caecum.

The first 4 years post op for Sarah were very difficult, she planned her eating around her day due to the diarrhoea and it really was not a suitable solution in any way, shape or form but what choice did she have? She was 14 at the time of her op and the GI started her on Questran very early on. Did it make a difference? Definitely, but she could not tolerate the texture and so refused to take it. The GI was not surprised by this and suggested Metamucil but it caused Sarah cramping and bloating. She then tried Lomotil, same problem. She moved to Imodium and again the same problem.

Throughout all this time she was at school and had a part time job. There days she would not eat until after work in the evenings but then that resulted in her spending quite a bit of time in the toilet overnight. It became a vicious cycle of that ended in a life of fatigue and a total lack of spontaneity.

She moved away to university in 2010 and after about 6 months she happened upon psyllium husks. Now the thing is Metamucil is essentially psyllium but all those years previously it did not agree with her so there must have been some sort of additive in the product?? as the natural psyllium did not produce the cramping and bloating for her. It was trial and error but she soon enough had it down pat and it changed her life immeasurably by giving it back to her. I dare say she has had some natural take up over time but at this point in time she normally goes once a day, maybe twice and it is solid. I don't know how big a part diet plays but hers has evolved over time and she now vegan/raw vegan.

Sarah forged the way for Matt so he started psyllium straight away. He will occasionally use Imodium or Lomotil for convenience when away but he also finds they cause cramping and bloating.

They both find that oils, whether they cooking or salad, do them no good at all and are the one thing that will have them bolting for the loo.

So for my two psyllium is the key to keeping the problem under control.

Dusty. xxx
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07-21-2013, 07:20 AM   #10
alisonwilkinson
 
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Hi i have never had a resection. I do have active disease in the terminal ielum though in which im on remicade 300mg every 8 weeks and methotrexate 12.5mg every week and folic acid daily except for Tuesdays when I take my Methotrexate.

Alison
11-17-2013, 07:32 PM   #11
Spooky1
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Dusty, I also spent the best years of my life not eating until around 9 or 10 pm. then on loo all night just like yours. Questran could give me issues with cramps and bloating, these days they've added aspartyme to questran, so I can't even take it in an emergency as it'll give me migraine lol.

where do you buy your psyllium husks, and do your offspring have any active crohns, strictures, ulcers, bleeding or anything that might be aggravated by roughage?

thanks.
11-19-2013, 06:00 AM   #12
M101
 
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Hi Guys

I had the SEHCAT test about a year ago to see if bile acid malabsorption was contributing to my diorrohea and the results came back saying that it wasnt.

However, during my last scope, there was loads of bile everywhere and my Dr had to get out his 'power wash' to wash it all away! I have an appointment today to discuss this but we have spoken about going on the medication anyway to see if it helps.

Did anyone else have a SEHCAT test that came back as negative but ended up having bile acid malabsorption anyway?

Thanks xx
11-19-2013, 09:51 PM   #13
SMSIRL
 
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101 had same results. Went on meds for bile leakage into colon ... helped no ends. Hope u have same results.
11-20-2013, 08:10 AM   #14
M101
 
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Hi there

Thanks for your response. I was advised yesterday that severe crohns in the ileum can affect the bile that gets reabsorbed (i.e. it doesn't) which explains the mass bile! Makes sense I guess

Em xx
11-20-2013, 10:45 AM   #15
VeganOstomy
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Have any of you guys with this problem tried a low fat diet? Since fat stimulates bile production in the digestive tract, I wonder if it could provide some relief.

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11-20-2013, 07:40 PM   #16
LucyCarroll
 
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A low fat diet is a life saver. I was on the chole powder but is sent my triglycerides through the roof. 1200 if I remember right. A low fat diet does help.

11-21-2013, 01:01 AM   #17
SMSIRL
 
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Was on low fats anyway - so didn't help. However, I have no doubt that things would only have been worse on a non-low fat diet. My biggest problems is finding anything I can eat during a flare that doesn't make me fat! [I for my own perverse reason gain weight during a flare! I can't take fibre and much vegetable mater during flares]. No flare I eat like a health obsessed.... low fat, low processed carbs, fibre+,veg+,fruit+. But during flare can only eat low residue stuff that is calorific - then add steroids and blimp time is here. Because of the diet I'd put on weight anyway, but when steroids were added to the mix they multiplied the effect.
11-21-2013, 01:48 AM   #18
DustyKat
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@Spooky1 - Sorry for the late reply.

I buy the psyllium in the supermarket. For us it is located in the gluten free/vegan/health food aisle. You can also easily pick it up at pharmacies and health food stores but the supermarket is the cheapest. IIRC 500grms is about $7.00 and it lasts quite a few weeks with Matt using it once a day.

My two are in remission.

If anyone does start using it be mindful that it has the similar restrictions when it comes to taking medication and supplements that Questran does. So medication needs to be taken one hour before or two hours after the psyllium.

Dusty. xxx
11-21-2013, 04:24 AM   #19
Spooky1
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@101, I had a gamma ray test, had to go back a week later to see if any bile salts were still in intestine, came back truly abnormal with none there. I don't get to eat fats really. I just cannot break them down. Sometimes I wonder if it is the bile that inflames the intestine. Does it cause crohns. Feels that way sometimes, burns the skin off the bum lol.
11-21-2013, 04:25 AM   #20
Spooky1
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Thanks dusty, i'll give psyllium husks a go. so pleased both of yours are in remission.
11-21-2013, 04:37 AM   #21
DustyKat
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Good luck Spooky!

Dusty. xxx
11-21-2013, 05:24 AM   #22
NIGHT FLIGHT
 
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Hi:
I'm new to site, I also am suffering from bile-acid D had my first surgery last December, they never explained the removal of the illeocecal valve, last colonoscopy showed crohns either has returned or they did not get it all when they were in there, but I rarely have a good day with my bowel movements, Now on humira shots every 2 weeks have been trying questran and colestipol,which both have gas and bloating issues,Im loosing hope for a normal life, if anyone has had any luck with a special diet please let me know
Thank You
11-22-2013, 08:32 AM   #23
Spooky1
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Hi, night flight, welcome and sorry you're having issues, I too have cramps from the anti diarrhoea also gas and bloating. I tend to find the crohns starts up again two weeks after surgery at the join of the previous resection.

Please keep up hope, some scientists in Melbourne have discovered the reason why these auto immune diseases exist, now for the meds! Hurry up Melbourne. probably five years away lol.
11-22-2013, 02:32 PM   #24
Crohn's gal since 1989
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Dusty, I also spent the best years of my life not eating until around 9 or 10 pm. then on loo all night just like yours. Questran could give me issues with cramps and bloating, these days they've added aspartyme to questran, so I can't even take it in an emergency as it'll give me migraine lol.

where do you buy your psyllium husks, and do your offspring have any active crohns, strictures, ulcers, bleeding or anything that might be aggravated by roughage?

thanks.
I find drinking a cup of peppermint tea after dinner really helps with the bloating and cramps since I've been taking Questren.
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Bonnie

Diagnosed 1989
Asacol,Pentasa and Entocort (didn't work in 2005 and didn't work now)
Done with Prednisone 09/07/13
Azathioprine (Imuran)150mg no longer working
Developed allergic reaction to Humira injection!
Currently trying Remicade with Methotrexate
Still trying to get into remission!

Ileocecol resection surgery
September 14th, 2013.
55cm small bowel removed!
11-22-2013, 04:25 PM   #25
Spooky1
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shall give that a go. thanks
12-11-2013, 10:07 PM   #26
Justducky
 
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Imagine my surprise when I came across this post! I was diagnosed with Bile Malabsorption a year after my gallbladder was removed. It took a good Doctor to listen to me. I'm actually on two medications because even on Lodalis alone bile is visible in the toilet (TMI I know). After being prescribe Ursidiol I find things have evened themselves out a bit.
I was diagnosed with Bile Salt Malabsorption in 2011. Imagine my surprise to hear of this forum. I am taking Colestid 4 tablets a day. I also had my gallbladder removed. I could not take the wallpaper paste originally prescribed. I'm glad I found a doctor who knew about this disorder. I also have fibromyalgia.
12-13-2013, 11:33 AM   #27
Spooky1
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Wallpaper paste! lol, I took it for years. I'd knock it back in 30 secs and be done with it. unfortunately, it then caused me loads of griping pains after years of use. Hope the colestid works for you. and welcome to the forum.
12-13-2013, 01:11 PM   #28
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I'm don't think I actually have BSM, I was given questran light as a trial, but my bowel improved quite a bit before I even started taking it so if that's my issue or not.

But I wanted to say to those who are struggling to drink it - if you have a smoothie maker, take half a banana (or a whole one if you can manage it) and mix it up with milk or a milk substitute. You can barely notice it. I found it absolutely impossible to drink on it's own! Horrible stuff.

Best of luck
12-18-2013, 09:29 PM   #29
Mike58
 
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Hi all,
My GI doc put me on a drug called Welchol. He said that it is normally used on high cholesterol patients but that it can also bind the bile to prevent diarrhea. I've been on it for just a couple of weeks now and can't really tell much difference. Doc did say it may take a good month to start working.
I had 20 inches of ileum and small bowel resected last August.
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03-21-2014, 07:55 AM   #30
yosemitegirl
 
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Having had 10 surgeries, the bile malabsorption finally became a problem. But the tipping point came with removal of my gallbladder. Given Questran and couldn't get out of the bathroom without it. The biggest downside is when I have a stricture, the Questran can actually block it. In an xray it looks like I am constipated, and I have had many debates with ER docs who don't listen to me when I say they are looking at a ball of Questran.

Incontinence a big problem with so much intestine gone, both small and large bowel. Definitely the bile thing just makes it worse.

Thanks to everyone for sharing stories that no one without Crohn's ever wants to hear about.
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