# Bile Acid Malabsorption Support Group



## TheGhirlEmma

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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## nogutsnoglory

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.


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## TheGhirlEmma

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.


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## Nrthngrl

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.


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## 723crossroads

TheGhirlEmma said:


> 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.


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## theo

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!


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## 723crossroads

theo said:


> 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!


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## alisonwilkinson

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


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## DustyKat

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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## alisonwilkinson

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


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## Spooky1

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.


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## M101

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


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## SMSIRL

101 had same results. Went on meds for bile leakage into colon ... helped no ends. Hope u have same results.


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## M101

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


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## VeganOstomy

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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## LucyCarroll

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.


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## SMSIRL

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.


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## DustyKat

@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


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## Spooky1

@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.


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## Spooky1

Thanks dusty, i'll give psyllium husks a go.  so pleased both of yours are in remission.


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## DustyKat

Good luck Spooky! 

Dusty. xxx


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## NIGHT FLIGHT

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


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## Spooky1

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.


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## Crohn's gal since 1989

Spooky1 said:


> 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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## Spooky1

shall give that a go. thanks


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## Justducky

Nrthngrl said:


> 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.


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## Spooky1

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.


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## Thunderstorm

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


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## Mike58

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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## yosemitegirl

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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## Ruann380

I've had one surgery, ileocecal valve resection back in 2008, tried all kinds of meds to help with the D, nothing really worked until I found Questran, that was brilliant, but unfortunately it was taken off the market in South Africa last year, I moved over to immodium for about 8 months, it was okey but not as effective as Questran. 

I've been using psyllium husks for the past 2 weeks and I must say I can have a normal day again with only 1 bowel movement per day, and as far as I know there are no side effects or long term problems....


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## Ali29

*Help*

Does anyone know what can or causes Bile Acid Malabsorption when you still have your gallbladder?  My GI cannot determine the cause yet - I've tried many meds - we are at a loss?  Constant nausea, lots of pain - eating will always cause nausea/pain within an hour of eating?  Lots of D even with meds.  Blood in stools on/off, today it is back again and I have a lot of burning in my esophagus  - RBC has been slowly declining and has been below normal.  I think my GI needs to go back in and look around - spoke with his PA, appt is Thursday but will call Monday to see if I can get in earlier.

Liver, gallbladder, pancreas scans all look fine. No energy, feel bad everyday, feel like crying.


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## ElizabethInDallas

*Thank God!!*

Wow...This is the first place I've found where people could relate.  I lost my ileum, caecum, appendix and top 4" of my colon due to gangrene.  5 years of diarrhea later, my gall bladder was taken and now my gut bloats like CRAZY!!  I've gone up 3 pants sizes, which is pretty humiliating...and it's hard as a rock.  Any tricks for cutting down the bloat & swelling?

If one more person asks me when I'm due....:ybatty:


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## huffpz6410

I can relate to bloating and going up sizes of clothes.  I had gallbladder out 10 years ago in 2004.  Having off and on D for those ten years.  Seems like I get flares of it.  Feeling muscle and joint aches whenever it gets bad.  In past MD has prescribed cholestryramine (Questran).  Am back on it now.  It helps some but is awful to take - feel like i'm trying to swallow dry flour and it gets stuck in my throat.  I recently have had low iron, low iron SAT, fecal lactoferrin (WBC), elevated CRP so doc was looking for microscopic colitis.  A colonoscopy on 4/4 didn't reveal any colitis.  Just got Prometheus IBD tests back this morning.  Normal.  So doc has ruled out IBD and will not do pill cam so look at small intestine.  Still attributing D to gallbladder.  I'm not so convinced since having problems with iron.  Doc has referred me to nutrionist 6/12.  Wondering if some type food is triggering symptoms.  Know for sure I am lactose intolerant.  Celiac came back negative.  But, it does for just about everyone -- I believe you have to have pretty severe erosion for celiac to come back positive.  Regardless, wonder if I have non celiac gluten sensitivity (NCGS).  Anybody on a gluten free diet have advise on how to do this?  It is going to be hard to go gluten free. 

About bloating, I have never made the connection between bloating and bile acid malabsorption.  Will pay attention and see if Questran helps with bloating or not.  My sister had bloating problems (same thing with needing 3 sizes of clothes) and she found out through breath testing she is fructose intolerant.  Anybody do the fructose breath test.  My GI won't order it.  I guess I will bring it up again with the nutrionist.


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## Ali29

I took Questran for awhile - severe bloating, uncomfortable.  Drinking it with orange juice made it a little easier to get down.  Had my GI not done the Pill Cam - we never would have known that the spot my Crohn's is the small intestine, duodenum and the villi were severely blunted - I would push for the Pill Cam - otherwise I would never have finally had a diagnosis and a start to finding a way to get better.   

I hope you can get your GI to try the Pill Cam.  Maybe you should get a 2nd opinion.

Hope you feel better!


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## huffpz6410

Ali29 - thanks for the reply.  My GI said insurance would only do Pill cam if medically necessary.  He did Prometheus test to determine whether or not Pill cam was warranted.  Since it came back negative for IBD he won't order further tests.  It is hard to know when to keep push doctor and when you are at the end of the line in terms of diagnosis.

Has anyone out there had negative Prometheus yet still had Crohn's that was diagnosed with pill cam?


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## highlandsrock

Last Monday I had my second SeHCAT scan to check for Bile Acid Malabsorption. I was told the results would take a week to come through so I waited until today to email my consultant to see what they said. He emailed me back with the results - "SeHCAT Retention at Day 7 = 1% (Normal study: >15%) Impression: Severe Bile Acid Malabsorption". Looks like I'll be on yet more medication. I'm surprised that with such a low result I don't feel a lot worse. I am getting seriously pissed off with Crohns piling yet more misery on. Anyone else suffering from this? It seems to affect a large proportion of anyone who has had their terminal ileum removed.

Looks like I need to join a new support group


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## Ali29

I suffer from this also but I still have my terminal ileum.  We have not determined the cause yet.

Sorry you have to deal with this too - I have really bad days and think my severe nausea/pain comes from the bile.

Good luck - hopefully you will be able to tolerate the meds for this!!


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## Spooky1

I too had a gamma xray and one week later.  Nothing left in there, was right through.  You have my sympathy.  Questran worked quite well until they stuffed aspartame in it.  can't take it now.


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## rob101

Have you tried Colestid ( The plain version)it doesn't contain aspartame, only the orange flavoured one  does.


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## Spooky1

Sounds just what I need, Rob.  Thanks, will be on the phone to the ibd nurses tomorrow.


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## huffpz6410

I am not familar with gamma xray for Bile Acid Absorption.  My doctor has not suggested that.  Can anyone give more details about this test?


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## rob101

Hi Spooky1 did you manage to get hold of the Colestid (colestapol) ?


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## Spooky1

Hi there, Rob,
I just got back from my friends (retired GP) and she said that colesevelam is welchol and very similar to Colestid.  Just looked up the meds, and omg, what side effects.  I thought it was crohns causing all that, lol.

Seems they both work the same.  Do get stomach gripes with them though.  but I seem to get that with any anti diarrhoea meds.
Might mention it to gastro bloke whenever I see him next.


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## Ann Morgan

Bile Salt Malabsorption, I had never heard of this until today ( which shows how little I know about my Ulcerative Colitis and how little my Gastroenterologist told me. )  I had my gallbladder out in 1995. I started to have bad diarrhea in 1997. At some time after that my old PCP gave me a prescription for Cholestyramine Powder. My PCP did not say that he thought I had BSM. I started to take the Questran and I felt much better, not 100% better but way better than I had been. In the late 1990's I went to an Internal Medicine Doctor. I have a lower GI and a Flexible Sigmoidoscopy. He did not do a colonoscopy. I think ( that was a long time ago ) that he told me I had IBS. I was to eat more fiber. I went home and gave up on colon doctors for a while. I saw a Gastroenterologist in 2006 and I had a colonoscopy and was diagnosed with Ulcerative Colitis. Finally I had a name for what was wrong with me. I continued with the Questran and was prescribed Asacol and then later on Lialda. My Gastroenterologist never told me how the Questran worked or anything. He knew I was taking it but he made no comment whatsoever about it being related to my colon disease. I have had great success with the Questran, I take it twice a day. If I do not take the Questran I have yellow, watery diarrhea ( I call it "emergency diarrhea ) and I have nausea, dry heaves and just a real icky feeling. I told my new Gastroenterologist about the Questran and how much it is helping me. He made it sound like he may take me off of the Questran in the future depending on what my colonoscopy results say next week. I told him if I don't take the Questran that I would be homebound and on the toilet all of the time and be in pain ( and probably be in adult diapers ). If he takes me off of the Questran I will be scared. If he has a better alternative, then I will try it. But just going off of the Questran for one day, or missing just one dose is a big mistake for me. Lately I HAVE been having constipation instead of diarrhea, so I have to admit that I have skipped a dose or two here and there with no negative results. The Lialda is a very, very expensive medication that my insurance, at this time, is only covering 50% of the cost. I am trying to apply, again, for a free Lialda medication program through Shire Cares that can give me this medication free of charge. I have used this program once before and it is a lifesaver !   The cash price for Lialda at my pharmacy is $432.00 per month. Lialda is the only name brand medication that I take. Anyhow, that you so much for writing about the bile malabsoption issue. I cannot believe that I have had diarrhea for 17 years and no doctor ever used those words to describe my symptoms. I never knew that anal fistulas and rectal abscesses were related to my Ulcerative Colitis until just a short while ago. No doctor or hospital ever said that these fistula and abscess things were related to my IBD. I guess I need to ask more questions and get more educated. Thanks for listening.


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## Spooky1

Wow, that really is being left in the dark.  I'm astonished.  poor you.  If doc refuses questran find another doc.


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## Ann Morgan

I have a new Gastroenterologist. I am having a colonoscopy on 8/21. I had been having diarrhea for 17 years and now for the past 4 months I have been having constipation. 

I have been reading here about Bile Malabsorption. I have been taking Questran for quite a few years. My Primary Care Physician from many years ago prescribed it but he never said anything about Bile Malabsorption or that any of my symptoms I was having were connected to having my gallbladder removed in the past. 

I took iron pills for a long time because of iron deficient anemia ( I even had a blood transfusion once ). My new PCP said my iron levels are okay and told me to stop taking the iron pills. I hope he is not making a mistake. I don't want to have a blood transfusion again. For a short while I was getting the B12 shots and then I had no insurance for a while and so now I am back on B12 but I take the pills from the drugstore ( per my new PCP ).  I am also taking D3 vitamin, per my Endocrinologist ( she also is monitoring my Osteoporosis in addition to monitoring my Thyroid ). I also take the prescription drug, Fosamax, for my Osteoporosis. 

Well, some of this is probably off topic, but I just wanted to say that I am reading so many posts here about health issues that I am suffering from and that I am learning a lot. So many of my health issues are connected, but it takes doctors years to finally connect all of the dots. I have several new doctors this year because of new health insurance. Maybe these new doctors will be better than the old ones. I will start asking more questions and start taking better charge of my own health. I have only met one person who has this same disease that I do. I know that there is actually a Crohn's / Colitis Support Group in my city, but I have never attempted to join.

Thanks for listening.


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## Ann Morgan

Hi. I was just reading about Bile Malabsorption tests on the Mayo Clinic website. They say that the seHcat test is not available in the United States. The website offers a couple other alternatives though. What tests have you all had for Bile Malabsorption and which one works the best and gives the best diagnosis. I want to talk to my new doctor about it.
Thanks.


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## Moogle33

Hi,

I'm looking for support. I'm so frustrated because I haven't had any tests that explain my malabsorption issues. Currently trying gluten free and taking enzymes. 

Questran sometimes gives me relief, but it doesn't always help my fatigue. Has anyone been on Questran for a long time and maintained their weight? I read someone's post about their doctor always seeing constipation on X-rays. That's exactly what they see with me, and didn't want me to take questran. I know that it feels like my stools are loose and clogging me up. The questran made the stools to where they were solid, and didn't irritate me. Sorry for the rant. Just looking for answers! Thank you.


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## highlandsrock

Having suddenly become interested in BAM I've been doing a bit of reading up on the condition and come to the conclusion that many of us are suffering from it but it is not widely discussed by either sufferers or consultants. It also explains some comments that various surgeons and specialists have made over the last four years but without mentioning BAM itself.

If anyone is interested I've recorded my process of being diagnosed here - http://www.crohnoid.com/2014/08/bam-sehcat-test.html

The bit I cannot get my head around is the SeHCAT test showed that I retain less than 1% of bile acid which means I've got severe BAM. I would expect to be constantly making a dash for the bathroom, even though I take 2 capsules of Loperamide a day, but I can have several days, or even weeks, where my digestive system works completely normally and no Big D and no sudden dashes. Is a low dose of Loperamide really what's keeping it all in check?

I'm seeing my consultant at the end of September to talk through where we go from here. Given that a lot of the time I'm pretty good should I start of meds to combat the BAM or leave well alone? Would BAM meds bring other benefits to my general digestion/absorption of vitamins etc. or should I stick with the Loperamide? Any thoughts?


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## Ann Morgan

dear moogle: I have been on Questran for several years. My old PCP prescribed it to me way before I had ever been diagnosed with Ulcerative Colitis. I have had success with it. I have had issues with obesity over the past thirty years, so I can't tell you if it made me gain or lose weight. But, after 17 years of having diarrhea I have recently become constipated, so I had a colonoscopy a few days ago. I took it upon myself, very recently, to start taking just one Questran packet a day and I have had no ill effects from doing so ( I did not had any watery, yellow diarrhea after making the Questran changes. BUT if I don't take it at all, I get terrible yellow watery diarrhea and dry heaves. Ugh. )  I am going to continue taking one packet a day, every afternoon and then also watching carefully what I eat. I know that I shouldn't self-prescribe my Questran by taking just one packet a day instead of two, but my new doctor actually casually mentioned taking me off of it altogether. I CANNOT go off the Questran altogether because I get really sick ). I HAVE been having one bowel movement each day now and the stool is not as hard and I don't have to push like I did in the middle of May. I have not received my biopsy results yet and I don't even have a follow-up appointment with my Gastroenterologist at this time.


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## Ann Morgan

Spooky1 said:


> Wow, that really is being left in the dark.  I'm astonished.  poor you.  If doc refuses questran find another doc.


Hi Spooky: 
I got a new Gastroenterologist on July 30th, 2014.
My appointment was very short and he spent all of his time
on his computer and not listening to me.
I actually signed a medical records release form so that he
could get the records from my old doctor. I wanted the new
doctor to know about my previous colon history.
I don't think the new doctor cared a bit about my history.
I had a colonoscopy, in his doctors building, on August 21st, 2014.
I waited two weeks for the results.
Today a gal called me from his office and told me that my
results were normal.
She told me that the doctor wanted me to discontinue all
my colon medications and to see him in three months.
Okay, this going off of all my medications is not going to happen !
I take Lialda, two pills a day.
I have been taking Questran for years now to control the yellow
watery diarrhea and all of the crummy feelings that go with the
yellow water diarrhea. 
Now I know I went to him because I was severely constipated
in May 2014 and I could hardly push the stool from my body
at that time. I also know that Questran can cause constipation.
But my constipation is not as bad now as it was in May 2014.
I was in quite a bit of panic and stress in May over the
constipation after having diarrhea for 17 years previously.
I am going to change Gastroenterologists. I don't like this one.
I HAVE been experimenting on my own with the Questran
and I have tried taking only one packet a day, I have had
some success with this but not enough success, I believe,
to ALWAYS take one packet a day. I think I can keep taking
the two Questran Packets a day and my Lialda and then
just take Miralax and/or Metamucil. I know I should not be
making my own treatment plan, but until I get a new
doctor this is how it is going to be. :eek2:


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## Spooky1

You don't have much luck, do you?  if you can keep getting the questran yourself without prescription then keep taking it.  It's your body and you have to put up with it 24/7 so take whatever you can to keep things as normal as possible.  I hope your new gastro bloke is much better for you.


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## Ann Morgan

Spooky: 

Well, the good thing is that my old Primary Care Physician, many years ago, is the one that prescribed me the Questran Powder. Over the last few years I have had a few Primary Care Physicians and each time I just transfer this prescription from one office to the other. So, it is my Primary Care Physician who refills my Questran Powder prescription ( Thank God ). I will have no problem renewing the Questra prescription because it is all in the hands of my Primary Care Physician and NOT my Gastroenterologist. My Primary Care Physician takes care of my Questran Powder, my Atenolol ( high blood pressure ), my Protonics ( acid reflux ) and my B12.

I have already planned what I am going to do next week. I am going to drive to my  Gastroenterologists office and I am going to tell them that I need a photo copy of the colonoscopy results and the biopsy results. I will tell them I need them for my own personal records at home. Hopefully they will give me the results and I can be on my way and never go back there. I can choose a new Gastroenterologist through my health insurance company when I am ready to do so. I want to be tested for Bile Malabsorption. I also think it is weird that just some office gal called me on the phone with the colonoscopy results. I should have had a follow-up appointment with the Gastroenterologist after the colonoscopy to discuss the results and any future treatment for my Ulcerative Colitis. I don't like how this guys office is run and I don't like him. I have a choice to change if I feel something is right with this guy.

I am practicing being more assertive this year. I suffer from Major Depressive Disorder and sometimes people like me don't speak up and we just don't get what we need because of it. But I am becoming more bold so I can attend to my own needs. I have new health insurance this year and so I had to choose a New Primary Care Physician at the beginning of 2014. There was some problem with the first doctor I choose because she was not in the "network" that I choose ( health insurance is sometimes very complicated). So I had to scrap her and choose another one. The second one I chose I only went to once. He DID order some tests that I really DID need and I had those tests done ( an ultra-sound of my kidneys, a chest x-ray and an ultra-sound of my thyroid ). But I never went back to see him again because he used unprofessional language and inappropriate touch. He just made me feel very uncomfortable. I was able to retrieve my test results from the Radiology company. But this bad doctor had also taken blood and urine tests in his office and I did not have THOSE results. I wanted those results. So I went to his office and requested those results from them and I told the front desk lady that I needed the blood test and urine test results to bring to a Specialist doctor ( I was lying, but I needed the results to give to my new, new Primary Care Physician.) Now I am seeing a fairly decent Primary Care doctor and I plan to keep him. You see, here, with my 
health insurance plan, your Primary Care Doctor has to "refer" you to a Specialist if you need to see a Specialist ( such as a Rheumatologist, Orthopedic doctor, Endocrinologist, Podiatrist, Gastroenterologist, etcetera ). I am seeing six Specialist doctors right now ! 

So, my current Primary Care will take care of my Questran. And I have one more refill on the Lialda through my old Gastroenteroloigst ( that is stored in my Pharmacys computer ). So I will be okay with these two colon medications until I find a new Gastroenterologist. 

Sorry this is so long. Had to get it off of my chest. Ahhhhhhhhhhhhh.


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## Spooky1

Wow, thank god you have a good GP.  here in the UK it's hard to ask for anti diarrhoea med stuff, even B12.  It all has to come from a specialist as the GP practices can't afford our medications, so they won't provide if they don't have to.
Good on you for being assertive.


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## highlandsrock

Having been diagnosed with "severe" BAM by way of a SeHCAT test, I've got a question I'm curious about and thought I'd see if anyone knows the answer. I will also ask my consultant when I see him in a couple of weeks time. 

The question - if 2 tablets of Imodium a day keep the BAM pretty much in check would there be any advantage to taking something like Questran instead? Does it do more than just stop the rushes off to the bathroom? Does it improve absorption generally of nutrients etc.?

BTW Spooky1 I've never had a problem getting any medications, B12 injections or tests done when required from my GP or hospital. Nowadays I do tend to only see him for minor ailments and leave the "heavy" stuff to my consultants at St.Thomas'.


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## Ann Morgan

HIGHLAND: I have been taking Questran for many years now. It was prescribed by a former Primary Care Physician after I went to him complaining of terrible, yellow, watery diarrhea that also came with bloating and discomfort and sometimes dry heaves. I am very happy with the Questran. I have never been tested for Bile Malabsorption, but now that I know more about it, I am going to request the test the next time I see my new Gastroenterologist on October 22nd ( for a follow-up visit ). 

I recently had a colonoscopy and it showed that everything was normal !  This must mean I am in remission ? I am not sure what remission is ?  I have had problems with diarrhea for 17 years and all of a sudden in May 2014 I started to have really severe constipation !  The constipation is not as bad now and if I want to I will take Miralax or something like that for the constipation. After the colonoscopy a gal from my new doctors office called me on the phone and said the doctor wanted me to discontinue my Questran and Lialda. ( Okay, why did I not get a follow-up appointment with the doctor so he and I could talk about the colonoscopy results and future treatments, etcetera. Is he too busy to even schedule a 15 minute follow-up appointment !  I think his practice is all about doing the colonoscopies and not much else ? ).On the phone I told the office gal that I cannot discontinue the Questran because I get really sick. She called me back and said that the doctor said it was okay for me to take my Questran. Well, I did not need his permission to continue taking it, I was going to do that anyhow !  I am also going to keep taking my Lialda until that pill bottle is empty ( since I already have the pills ). Sorry this is so long. Thanks for listening.


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## Spooky1

I found questran to be more effective than loperamide, but then I too six sachets of questran and 8 loperamide a day to control things.  they can reduce the effect of other medications and also prevent minerals and vitamins being absorbed.  After many years of this they started giving me huge gripes so I had to discontinue them.  I still take loperamide though but take pain killers an hour before to counter the cramps caused by loperamide or colesevelam.


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## Ann Morgan

spooky: yeah, the instructions for the questran are something like......take it two hours before you take any medications/vitamins/supplements and then take it four or six hours after you have taken any medications/vitamins/supplements. I once brought this up with my old Gastroenterologist and he made it seem like I really did not have to wait the four to six hours - - - that I did not have to wait that long. I take pills in the morning, later on the questran, then more pills, then questran, then my nighttime pills. This does not work out too bad when I am at home, but I recently traveled out of town for three days ( I rarely EVER travel any longer ) and I had to make sure I took my meds at least around the same time each day and that was hard to do because I was not in charge of the schedule for the days I was there and I wasn't the driver of the vehicle

PS: Of course since I was not at home ( I eat almost all of my food from home now-a-days) I made some very poor food choices at the airport. My sister, niece and I were at an airport restaurant and I decided to half a meal with my sister. It was something like, fish and fries and coleslaw. Now I know that I cannot eat those foods, but I did it anyhow !  I so much miss food that has flavor ! Needless to say, 1/2 hour later, at the airport, I was running to the airport restroom. OMG, all four of the stalls were full and one lady was in line ahead of me. I think the lady ahead of me heard me say something about there being a line and how I was not going to be able to make it. That nice lady let me ahead of her in line, without her kindness I would have pooped in my pants in that restroom.

On my return trip, I was in the airport again, making poor food choices. I was starving and I wanted, once again, some food with some flavor. I got a large chicken salad sandwich. I ate the whole thing before I got on the plane. Well, an hour later, on the plane, I had to rush to the airplane restroom. Holy Cow. I know that I cannot eat chicken salad sandwiches because the last time I had one the same thing happened.:duh:

I guess the only thing I can eat at the airport is probably a bagel and cream cheese. Or maybe just the bagel ?  Or maybe just drink water until I get home ? 

Thanks again for listening.


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## highlandsrock

I've now had a chance to discuss my diagnosis of severe BAM and we have made a decision on medication - the link is here if you are interested - http://www.crohnoid.com/2014/10/lets-talk-bam-amongst-other-things.html


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## Ann Morgan

dear highlandsrock: I see my new Gastroenterologist on October 22nd and I am going to ask him for a Bile Malabsorption test because I think I have it. He is a very new doctor to me and I don't even know if I like him or not. I am going to see him this month and then I will decide if I am going to keep him or move on to a different doctor. My new patient visit lasted about ten minutes. Then I had a colonoscopy. Instead of him scheduling a follow up visit to discuss the colonoscopy results with me, he just had his office girl call me to tell me what the results were. I think I should have had a follow up visit to discuss with him face to face the results and about any future treatment. If I don't get a good "vibe" from my next visit, I will be looking for another doctor. 
Thanks for listening.


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## highlandsrock

Hello Ann, ten minutes for an initial consultation does sounds remarkably short. Do you get charged based on time or content? With colonoscopies I like to keep awake so I see what the doctor sees and can ask the questions there and then but there is always a follow-up booked.

The SeHCAT test that I had done isn't apparently licenced in the States but there must be other tests if you can't have that one. BAM does seem to be a condition with which many of us suffer but doctors don't diagnose widely. Good luck with your next appointments


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## octhawk13

Has anyone figured out how to deal with colostomine / questeran? It says to take it with food and without other meds, so I asked what is more important,  take it without other meds or to take it with food, because I can't seem to keep without taking anti-nausea meds first. I was told to take it w/o food and follow the meds restrictions.  I finds the Questeran really beats me up (or makes me feel that way) and I'm told this is normal because I won't take it with food.  Sometimes I can't get it all down in the first place anyways


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## octhawk13

Has anyone figured out how to deal with colostomine / questeran? It says to take it with food and without other meds, so I asked what is more important,  take it without other meds or to take it with food, because I can't seem to keep without taking anti-nausea meds first. I was told to take it w/o food and follow the meds restrictions.  I finds the Questeran really beats me up (or makes me feel that way) and I'm told this is normal because I won't take it with food.  Sometimes I can't get it all down in the first place anyways


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## octhawk13

Sorry I posted twice. I'm having trouble working the site. Not meaning to bug you all with the same question over and over again.


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## Ann Morgan

octhawk13 said:


> Has anyone figured out how to deal with colostomine / questeran? It says to take it with food and without other meds, so I asked what is more important,  take it without other meds or to take it with food, because I can't seem to keep without taking anti-nausea meds first. I was told to take it w/o food and follow the meds restrictions.  I finds the Questeran really beats me up (or makes me feel that way) and I'm told this is normal because I won't take it with food.  Sometimes I can't get it all down in the first place anyways


I have been taking Cholestyramine Powder for several years. The manufacturer for my Questran is Sandoz. 

My prescription label says: 
Mix 1 packet with liquid and drink 2 times daily with meals, this is how my doctor is ordering it. My label also says, and this is from the manufacturer, that I am to: Take this medication with plenty of water, dissolve completely in 4 to 8 ounces of cold water or juice and drink slowly, take other medications or other non RX items at least one hour before or four hours after this medication.

My individual Questran packet says:
Preparation: Place the contents of one pouch in a glass or cup, then add at least 2 to 6 ounces of water or the beverage of your choice, then stir to a uniform consistency.

My Questran Box says:
Pour contents of one Cholestyramine for Oral Suspension USP pouch into a glass or a cup. Then add 2 ounces of your favorite beverage ( orange juice is a popular choice and stir vigorously. Then add 2 to 4 ounces of beverage to suit individual taste and stir vigorously again. Now the slightly-textured Cholestyramine for Oral Suspension USP mixture is now ready to drink.

I have been told that Questran can inhibit the absorption of any medications or supplements that you may be taking if you take the Questran too close to the time that you are taking your medications ( see what is stated above about taking the Questran one hour before taking all of your medications and then waiting for four hours after taking the Questran before you take any more medications. ) I try to follow pretty close to this rule. But your doctor is really the one to answer this question for you, every persons treatment is unique.

I took Questran twice a day for a very long time. In May 2014 my Ulcerative Colitis symptoms changed drastically ( from diarrhea for 17 years to severe constipation ). I had a colonoscopy and I was told my test results were "normal". I started to take the Questran only once a day so that I would not be so complicated. Right now I am still trying to figure out how to achieve having a somewhat normal bowel movement without having the intense diarrhea or the severe constipation. I have used Miralax too, it is a stool softener. 

I don't mind the taste of the Questran. The best way for me to get the Questran dissolved completely is to fill an empty 16 ounce water bottle with about 4 ounces of room temperature water. Then I pour one Questran packet into the water bottle. I put the cap on, and I shake vigorously. Shaking it like this gets all of the powder to dissolve the best it can. And I drink it down in one big gulp. Then follow with some more water. I do not take my Questran with food, but this can sometimes give me a stomach ache, so taking it WITH food is probably a wise choice. 

Well, this is my Questran story. Sorry this is so long. ALL my posts are extremely lengthy !   Take Care and keep in Touch.


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## highlandsrock

Are there any foods that make the symptoms of Bile Acid Malabsorption worse? For instance, that may stimulate to body to produce more acid?


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## Ann Morgan

How is a bile malabsorption test performed ?


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## highlandsrock

If you have a look here I have described the test - BAM-SeHCAT-test.html. I have read that it is not licensed for use in the States


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## nikimazur

I have Bile Acid Malabsorption. Had my gallbladder removed in April of this year, and also have severe disease in my ileum which leads to a perfect storm. I also have liver disease, which further complicates the matter. At this point, I'm not taking anything specifically for it, due to all my other issues.


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## Jerseygirl

I'm new at this.  What is bile malabsorption and what are the symptoms?  My son had his lg intestine removed in June 2014, reconnected in September 2014 with a j-pouch.  Since then, he is having lots and lots of pain.  We have narrowed out that the pain in from his butt, both external and internal.  And pain from possibly the pouch.  Any ideas?


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## Jerseygirl

Anne Morgan, I'd run!  If this doctor only spent 10 minutes with you he either is clueless or overbooked and has too many bills to pay.  Have you tried anyone at Mayo Clinic?  I'm wondering how they are, as I will be moving to the Phoenix in the near future.  Thanks.


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## Ann Morgan

Don't know if my Health Insurance would cover anything at the Mayo Clinic. I had Medicare last year. This year I have AARP Medicare Complete insured through United HealthCare. When I signed up I really did not know anything about "networks". I had a choice of 3 networks. I picked Banner Health Network which means I can only see doctors in that network AND hospitals in that network. So essentially I am limited to a certain number of doctors I can go to. Buyer beware, make sure you know what you are doing before you choose health insurance !  I also did not know about Coverage Gaps for prescriptipn medication ( sometimes it is called a "Doughnut Hole " and it a big rip-off. So, I was stupid and signed up for United HealthCare because the name AARP was in front of it ( even though in small print it says that they don"t endorse it ). I had to give up a great Gastroenterologist and Gynecologist because of this network thing. I am not going back to this worthless Gastroenterologist. Also, I recently had a CT Scan of my abdomen for my Urologist and it showed the possibility of terminal ileitis. Sorry this is so long.
 Having an MRI soon of my abdomen for my Urologist to look at the renal cyst, the cyst is not growin but the wall is getting thicker. It is only 1cm.


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## Jerseygirl

Ann, as I said, I'm new to all of this.  It's my 24 yo son who has UC/Crohn's.  He just had his lg intestine removed in June, and reconnect in SEPT.  He has lost 85 pounds and is still having a good deal of pain, that's why I was wondering what the bile malabsorption was.  Our gastro guy just said he wants to do an abdominal MRI and a capsul study.  I'm just praying it's not Crohn's.  This kid has been through so much already.  Good luck to you!


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## Ann Morgan

Is Questran used exclusively for Bile acid Malabsorption ?


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## LollyE74

After suffering with what was diagnosed at IBS for at least 25 years and taking Mebeverine (Colofac) and Buscopan (Hyoscine butylbromide) with very little relief, I ended up, after a few absences from work, seeing a private GP via my work's occupational health scheme.  After being referred to a professor of gastroenterology, I underwent lots of tests and after having a SehCAT scan, was diagnosed as having Bile Acid Malabsorption.   I have now been taking Questran (Colestyramine) for 2 months and I'm somewhat disappointed with the results.   I am due to return to the doctors soon to see how I'm getting on but as I understand it, if the Questran isn't working out, there's not really much else that can be prescribed. 

There is no doubt that the Questran has stopped the frequent diarrhoea but the cramps, bloating and wind actually seem worse with the medication.  I'm wondering if this will eventually settle down or whether I am stuck with it. 

After finally getting a diagnosis of what is really wrong with me, I'm now wondering if my only choices are to continue to live with chronic diarrhoea or to continue with the Questran and endure increased cramps, bloating and wind.  

If anyone who has been diagnosed with this condition for a longer period of time can offer any advice or comment I'd be very grateful.


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## LollyE74

Ann Morgan said:


> Is Questran used exclusively for Bile acid Malabsorption ?


Hi There.  From doing some research on the internet having recently been diagnosed with BAM I found out that Questran (Colestyramine) is used to lower cholesterol in the blood. Lowering cholesterol helps decrease the risk for strokes and heart attacks.

Colestyramine may also be used to treat itching in people with too much bile acid caused by a certain type of liver/bile duct disease (partial biliary obstruction).

I hope this helps.


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## Ali29

I found Questran & Welchol did help some but caused horrible cramping/bloating/gas.

One thing I have found this is helping somehwhat is Inner Eco Kefir (Coconut Water Probiotic - no lactose).  My new GI (professor of gastroenterology) has me drinking 4-6 oz every day.  The chronic continual diarrhea is not so bad and I have only been on it about 2 weeks.  It might be worth looking into.

Good luck!!


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## highlandsrock

Saw my GI Consultant up at St.Thomas' in London yesterday. Whilst we were passing the time of day (waiting for him to insert a camera where the sun don't shine) I told him that Bile Acid Malabsorption seems to be an area that was not widely discussed or known about by IBD patients and that it should get a much higher profile. We could do with an awareness campaign within the IBD family.

I was diagnosed late last year with severe BAM but have managed to pretty much keep on top of it with just two Loperamide capsules a day. I have discussed Questran and the alternatives but I know some patients don't get on well with them. I did wonder if the cholesterol reducing properties would make Questran a better bet but, as my GI put it, "If you don't have a cholesterol problem then there's no advantage". So I'm going to stick with the Loperamide that has worked for the last 3 years since my reversal operation.


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## LollyE74

highlandsrock said:


> Saw my GI Consultant up at St.Thomas' in London yesterday. Whilst we were passing the time of day (waiting for him to insert a camera where the sun don't shine) I told him that Bile Acid Malabsorption seems to be an area that was not widely discussed or known about by IBD patients and that it should get a much higher profile. We could do with an awareness campaign within the IBD family.
> 
> I was diagnosed late last year with severe BAM but have managed to pretty much keep on top of it with just two Loperamide capsules a day. I have discussed Questran and the alternatives but I know some patients don't get on well with them. I did wonder if the cholesterol reducing properties would make Questran a better bet but, as my GI put it, "If you don't have a cholesterol problem then there's no advantage". So I'm going to stick with the Loperamide that has worked for the last 3 years since my reversal operation.


If the company I work for hadn't insisted I see their doctor, I wonder if I ever would have been diagnosed with BAM?  I'd certainly never heard of it before and I'd never heard of the SehCAT scan either.   

During the investigations to see what was causing my chronic diarrhoea, I had a colonoscopy which revealed some pre-malignant polyps which were immediately removed.  I am very thankful for that and now can be monitored to ensure they don't return which means having all those tests was most definitely worth it.  However, now I have my BAM diagnosis, I do wonder how much difference it's actually going to make, especially if the Questran doesn't work out for me.


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## DustyKat

highlandsrock said:


> Saw my GI Consultant up at St.Thomas' in London yesterday. Whilst we were passing the time of day (waiting for him to insert a camera where the sun don't shine) I told him that Bile Acid Malabsorption seems to be an area that was not widely discussed or known about by IBD patients and that it should get a much higher profile. We could do with an awareness campaign within the IBD family.
> 
> I was diagnosed late last year with severe BAM but have managed to pretty much keep on top of it with just two Loperamide capsules a day. I have discussed Questran and the alternatives but I know some patients don't get on well with them. I did wonder if the cholesterol reducing properties would make Questran a better bet but, as my GI put it, "If you don't have a cholesterol problem then there's no advantage". So I'm going to stick with the Loperamide that has worked for the last 3 years since my reversal operation.


You would likely find that for many that suffer with BAM as a result of Crohn’s/surgery cholesterol won’t be an issue as they have malabsorption of fat. I know with the kids they sit at the lower end of normal or at sub normal levels. 

Good to hear that Loperamide works well for highlandsrock and yeah, if ain’t broke don’t fix it!  

Dusty. xxx


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## highlandsrock

Hi Lolly - I'm really tempted to try and run a BAM awareness campaign. I keep seeing posts from people who have never heard of it but are clearly suffering from it. Hopefully I can put the Crohn's on a back burner for a while so I will be looking for a new subject to get my teeth into.

DustyKat - that an interesting point about not absorbing fat. Hadn't even crossed my mind. Thanks.....and your right - if it ain't broke.....


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## Ann Morgan

I have been taking Questran for many years, even before I saw a Gastroenterologist. My Primary Care Physician many years ago prescribed me the questran. The Questran really helps me and I take 2 packets a day. It can inhibit the absorption of other medications (?) so I have to try to stay on a medication schedule each day so that I don't take any pills around the time I take the questran. I am going to see my OLD Gastroenterologist this month to ask him about Bile Salt Malabsorption. He is a good doctor.

Thanks for listening.

PS: I HAVE to take my Questran every day or I will have terrible watery yellow diarrhea, plus dry heaves, vomiting, bloating and nausea. I would be home-bound and VERY sick.


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## Ann Morgan

LollyE74 said:


> Hi There.  From doing some research on the internet having recently been diagnosed with BAM I found out that Questran (Colestyramine) is used to lower cholesterol in the blood. Lowering cholesterol helps decrease the risk for strokes and heart attacks.
> 
> Colestyramine may also be used to treat itching in people with too much bile acid caused by a certain type of liver/bile duct disease (partial biliary obstruction).
> 
> I hope this helps.


Cholestyramine us used for itching !  I had a problem with itching and scratching back in 2006/2007 which I attributed to my mental health issues. ( I know this is gross, but I would also pick the scabs off ). But I had been taking Questran for a while BEFORE my scratching and picking began - - - so scratching and picking in my case is surely from my mental health issues ?

Thanks for listening.


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## Kerry1st

I'm new. I have BAM As a result of fluffed up surgery to repair a bowel intusuption at age 39. Apparently rare in adults. Total resection. I have adeshions and structures and constant small bowel and intestional obstructions. 
I also have epilepsy and sliped discs and spinal nerve damage. Seems I hit the jackpot :dusty::dusty::dusty: 
On the upside Im married and have 3 amazing children. I having an extreamly literal crap day and thought I would and try and get support from people who know how awaful and limiting this condition is.
K


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## highlandsrock

Hello Kerry, welcome to the Forum.  I was going to say that I have experienced the highs and lows of BAM, bowel operations etc. but to be honest there aren't many highs. I sympathise with the "hitting the jackpot" remark. Have got to the point now where I just accept that every so often some new problem will need to be dealt with. How do you manage your BAM?

Hope your day has got better


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## Kerry1st

Hi, my day did pick up I'm the end after being stuck in the loo half the day and my 6Yr old exclaiming loudly 'your going again, I wanted to play frustration' 
I think today was due up a small obstruction. Pretty sure it was upper GI. 
I manage by having a huge sence of humour! Lots of toilet roll, wipes and mega tub of sudocrem. 
Medication wise I am on a low specilist diet for adeshions and strictures and obstructions designed by hospital. There are lots of foods I can't eat or can longer process. Red meats and wheat etc. 
I am on Cholastagel to bind and Dulcalax to lube and smooth, Omeprozole (stack of other meds)
I have kinks in my small bowel & intestine It's a fine ballance. I have reached the point where I accept that this is how it is. 
Today I felt awful washed out and ached from head to foot but in the morning I will feel different. I issues with severe distension and sulphur burps and foul wind. I really hope that there is someone with a similar experience as I have tried facebook pages but not found anyone similar as we are all so unique. 
Thank you for the welcome.


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## angie7otis

Hello all! I have suffered with this for the last 15 years! :stinks: Only last year was someone willing to run tests to see why I had severe diarrhea every day.  Probably because I finally had insurance. Now I am taking cholestimine daily.  As long as I remember to take it, it is great! I wish someone would have warned me about this before I had my gall bladder removed.  I wouldn't have suffered so long! Hard to hold a job when you potty 20 plus times a day! I am so glad to see support available! Thank you!!!:banana:


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## Rebecca17

Hi

I just wanted to say hello and introduce myself, I have just been diagnosed with Bile Acid Malabsorption last week, this is following a resection carried out in 2012. I am in the UK so had a SeHcat test, my score was 0.7% which bar one is the lowest they had ever seen in the hospital, (well I don't like to do things by half). I have just started to take Colesevelam 6 tablets a day so will see how it goes. 

Like a few others I seem to have hit the jackpot where it comes to health issues, I also have a complex heart problem and an autoimmune disorder which has caused an autonomic dysfunction. 

I did just want to say hello, there seems so little support or information around on BAM at least we can help each other.  

Rebecca


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## Spooky1

Welcome, Rebecca.
This is a great site for us Crohnies.  I too have Colesevelam for BAM.  I also have other auto immune issues, just like many of the people here.  At least you will get the understanding that you need, cos others without Crohn's and its other issues just don't seem to understand.


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## highlandsrock

Hi Rebecca, welcome. I'm convinced BAM is one of the best kept secrets. The information is out there on the net but you have to know about it in the first place. I said this to my consultant when I saw him a couple of weeks back. 

Have a look at the NICE document about SeHCAT testing. It quotes a figure - 97% of Crohn's patients that have had a terminal ileum resection and are in remission are suffering from BAM. I couldn't work out how I could be in clinical remission but still have to rush to the bathroom. Now I know about BAM everything falls into place. (My SeHCAT result was less than 1%).

I'm lucky enough to be able to control it with 2 capsules of Loperamide a day. I turned down the oppportunity to try Questran. If it ain't broke....

Keep posting, Nigel


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## Rebecca17

Hi Nigel 

I agree it does seem to be a well kept secret, I can't believe they don't routinely test people who have had a ileum resection. 

R


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## Aaahs

723crossroads said:


> 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.


Thanks for the info on how you take it. I just re-started it in the pill form after not taking it when it failed to work. This time it seems to be working a bit better but am cramping with it. 
(Or it may be the Crohn's ) The name of it is "Welchol". I like not having to dissolve it in a liquid.


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## Aaahs

Spooky1 said:


> Hi there, Rob,
> I just got back from my friends (retired GP) and she said that colesevelam is welchol and very similar to Colestid.  Just looked up the meds, and omg, what side effects.  I thought it was crohns causing all that, lol.
> 
> Seems they both work the same.  Do get stomach gripes with them though.  but I seem to get that with any anti diarrhoea meds.
> Might mention it to gastro bloke whenever I see him next.


I've had many surgeries for Crohn's & have had my gallbladder out, all in the 1980's. Diarrhea &/ incontince problems ever since. Used to take Questran but didn't work. The only thing that worked for yrs. was Codeine. The only problem with that is it dries your mouth out badly which is bad for your teeth. Now I've re-started with Welchol. You are right, the side effects feel just like Crohn's D. But I plan to keep taking it and see how it goes. 
It is nice to see others suffer this same problem, I thought I was the only one! It can be quite embarrassing when suddenly you are hit by a bout of incontince sitting around the table at a restaurant or hanging out with friends! I've become a bit of a recluse bc of it


----------



## Aaahs

P.S. 
How does one "Post" in this forum? All I seem to be able to do is "Reply" to others who have posted. Sorry for being such a newbie.


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## LollyE74

highlandsrock said:


> Are there any foods that make the symptoms of Bile Acid Malabsorption worse? For instance, that may stimulate to body to produce more acid?


I found this advice ...

"Concentrated sugars and fats (such as fried foods, full fat dairy products, and fatty meats) should be kept to a minimum or avoided. Fluids should be reserved for between meals"  - See more at: http://www.healthcentral.com/ibd/c/question/590403/51289/#sthash.wi8kdfFo.dpuf


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## LollyE74

"Idiopathic BAM, where there is no obvious cause, occurs in both men and women, mostly between the ages of 30 and 70.3 There is often a long history of diarrhoea, sometimes exceeding 10 years. The diarrhoea is continuous or intermittent, and nocturnal diarrhoea can occur"  

I fall into this category, having had no form of bowel surgery for another condition.  

source: http://bmb.oxfordjournals.org/content/92/1/79.full


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## jablack

Hi everyone, my name is Jan and I am 72 yrs old(this Sunday, in fact). For more years than I can remember I have suffered from IBS. Five years ago I thought my IBS was getting very much worse and following a previous 5 years of abortive trips to the doctor and subsequent tests, my husband and I decided to go for the consultant approach. When our doctor at the time told us the waiting time could be anywhere from a few weeks to several months, my husband proposed we went 'private' for the consultation. Within a week we had seen the consultant who diagnosed me with Bile Salt Malabsorption and prescribed Questran powders. One or two powders a day seemed to control the 'bile flow' and helped to regain a more normal way of life. Then, of course, last year the 'Questran manufacturing' problem occurred. I could not take to the 'lite' versions and panic set in until my husband came across 'colesevelam' on this website and approached our doctor with this alternative. It was prescribed and has been a successful replacement for the powders, again one to two tablets a day. Unfortunately, recently multiple visits to the toilet have returned, e.g. last week 9 times on a 2 hour trip to Dorset, turning it into a 4 hour trip. We had to return early from the holiday and our doctor has suggested 'upping' the tablet dose to 3 and blood tests, followed by a possible visit to a gastro-enterologist(I think that's right spelling). Sorry to drag on a bit, but I really wanted to get my story out there and ideally be able to talk to someone in the same or similar situation. I'm losing weight again and a 'low fat diet' is getting more and more difficult, and depression has set in. It is bad enough with the BSM, but the IBS as well is beginning to make life intolerable for me. Thanks for listening.


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## highlandsrock

Hi Lolly. Thanks for that link to the Oxford Journal. Very informative. If you haven't already seen this NICE report - https://www.nice.org.uk/guidance/dg7 - it contains some interesting information including how much the SeHCAT test costs to administer. I wonder if that has anything to do with why they are not used more widely.

So far I've managed to keep my symptoms under control just using 2 capsules of Loperamide a day. Have decided I don't want to try Questran or similar whilst I'm coping.

BTW - I see you're in London, are you under one of the big hospitals?


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## Aaahs

Jerseygirl said:


> I'm new at this.  What is bile malabsorption and what are the symptoms?  My son had his lg intestine removed in June 2014, reconnected in September 2014 with a j-pouch.  Since then, he is having lots and lots of pain.  We have narrowed out that the pain in from his butt, both external and internal.  And pain from possibly the pouch.  Any ideas?


I went for months being in pain & not knowing the source. I also had no colon but had a j-pouch that they used when re-connecting my small intestines to my undiseased rectum. I had several different bouts of hemmorrhaging but with each colonoscopy was told he could find only minor disease at the ileo-cecal juncture and of course, that j-loop was a blind loop. For some reason he never told me the pouch could be diseased and the cause of all the bleeding until I had surgery. They found the pouch grossly diseased and removed it. 
So to answer your question, yes, yes, yes, all his pain could be from the pouch! The scope is too large to enter and look around in it. I had been too dumb at the time to realize what he meant by "blind" loop bc he mentioned it so casually I thought he was dismissing it as a possible source of disease! Mention this to your Dr. 
If you live in the U.K. and are having to wait to see Drs. I would go private when you are having such problems. I live in the U.S. & continually go to Drs. Over 45 yrs. of Crohn's, chronic & acute pancreatitis, liver disease (PSC), BAM, arthritis, connective tissue problems, & every known autoimmune complication one can have I've learned to NEVER settle for a doc you're just OK with. Find a good one near a medical university center who takes the time to become intimate with your problems & knows they aren't mental issues! (I still recommend counseling for coping if you deal with multiple issues over time.) My GI guy studies my chart for 30 mins. before seeing me and then talks to me about what is going on for at least an hr. I see him whenever a new problem crops up or in the hospital. If nothing new is happening I only see him once a yr. for tests followed by an office visit. He is well worth the 2 hr. drive each way.


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## Aaahs

One doesn't need a test to know they are dealing with BAM. You have constant diarrhea, especially after you eat anything. Your stool consistentcy is very loose like mud or clear like tea. Sometimes it is all clear green, that is all bile. (Bile is green.) You may also suffer from incontince of stool if you have had multiple surgeries. (I have so mine may be worse than many others.) Quite simply it ruins your life as you once knew it. You always need to be close to a potty. I've had >7 fistulectomies so the bile acids quickly eat through the skin in my perianal area. I have a TOTO bidet on my toilet that is a lifesaver!! When I go anywhere I carry a diaper bag filled with extra clothing, adult diapers, wet wipes, Calmoseptine cream (to protect your skin) & any other item one may need if you have an accident! 
If you have BAM you know it, must accept the life changes, including exhaustion and live on as positively as possible. 
A therapist (over yrs.) is who finally helped me accept things; to take all the necessary rest I need, to arrange my plans differently and to not feel so guilty about it all. We ARE different from others and it is irrational to feel we are the cause of it all. 
I wish the best to all of you!


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## Spooky1

Aaahs, your posts describe me very well.  I do despair especially with the green bile whizzing through and removing the skin on the bum hole till its bleeding good and proper.  it's so sore.  Sometimes the best place to sit for comfort is on the loo.  I also have a doughnut cushion which helps.


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## Nicola clunie

​Hi I have had Crohn's for 19 yr had surgery dec 14  after surgery had incontenance all the time it took doc 6 mth to say bile salts ​were the cause am now on colesevam 625g 2 3 x daily have bad cramps n back pain the tablets have helped a bit but still have the odd day  most weeks where I don't make it to toilet 9 mth after surgery n doc has done nothing else am struggling to cope anyone any ideas that might help thanks nicola :sign0085:


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## Ali29

There are several different meds for bile acid but I also found that they caused terrible pain.  I'm on a pill now but most of the time it does not work.  They can increase the dosage and/or change to another one but some of the potential side effects (as with many) are scary.  I don't understand with this being such a terrible part of this disease and how it keeps us indoors with little quality of life there isn't something better.

I have basically eliminated fatty foods which helped me some.

Wish I had better news, maybe someone will come along who has found something better.

Good luck!!


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## Spooky1

I know the pains with those anti-diarrhoea meds too.  It's so difficult to cope with the pain and also the loo visits.  I never know which is worse.  Staying in helps.  I've had my confidence knocked for six, believe me.


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## Aaahs

Nicola clunie said:


> ​Hi I have had Crohn's for 19 yr had surgery dec 14  after surgery had incontenance all the time it took doc 6 mth to say bile salts ​were the cause am now on colesevam 625g 2 3 x daily have bad cramps n back pain the tablets have helped a bit but still have the odd day  most weeks where I don't make it to toilet 9 mth after surgery n doc has done nothing else am struggling to cope anyone any ideas that might help thanks nicola :sign0085:


Both of my surgeons recommended taking Codeine to help reduce the # of times needed to go to the bathroom every day. It has the side effect of constipation that you never become tolerant to. I take it as needed, depending on my daily activities. Currently I take 60 mg. twice a day. I have been taking it for 23 years with the approval of all my different GI specialists and my primary physician; it works well although I still have rougher times than others, with incontinence. I also take Welchol every day. I hope adding plain Codeine (without Tylenol or other meds) will help those of you experiencing incontinence. 
Since starting Welchol/Colesevam (and Budesonide) I have waked with a headache every AM. Does anyone know if either of these drugs tend to cause them?


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## Nicola clunie

Hi thanks for advice but am not allowed  to take codiene doctor won't give me it cause it constipates me would take if could get it won't give me anything to stop bowels moving am on low fat diet can't process chips even crisps are too much for my belly colesevam have helped wee bit but yeah you can get headaches from them especially when wake up also have had cramps I have had crohns most of life n coped OK but this is ruining me haven't worked since surgery my boy wont even go to shop with me in case have accident just want my life back hate staying in but no choice as I don't get any feeling when need toilet will it improve or am I stuck like this am only 39 too young for incontinence


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## ron50

I had a gallstone block off my pancreatic duct and put me into acute pancreatitis. That was around ten years ago. My doc had no conclusive indication of gall problems but he removed it on suspicion. For around five years I suffered constant bouts of diarrhoea. It was some one on the cancer survivors net who told me that around ten to fifteen percent of people having gall bladder surgery will have trouble with bile salt mal absorption . She recommended questran lite. I actually had some as a previous doc had prescribed it to help cholesterol control. It binds most of the liver salts including bile and cholesterol and takes them thru with only minor digestion. I tried it and it helped me greatly. Unfortunately some idiot put me on oxycodone and for two years I have lived on movicol, dulcolax and coloxyl.  Now I have to go off that because of hypo algesia so I half expect to have to go on questran again. It does not help that I have had irritable bowel most of my life as well as stage 3c colon cancer including 48 sessions of chemotherapy. I also have nephrotic syndrome of the kidneys and lose up to 7 grams of protein a day thru my urine. Needles to say colon and gall bladder surgery has left me with adhesions and tight spots. I am allowed to take up to five sachets of movicol a day as well as 4 dulcolax and 4 coloxyl. Quite frankly I'll take diarrhoea over constipation any day so I aim to go to the loo two to three times a day.   The one problem I find is that all of those pills make me feel unwell most of the time and I am on cyclosporine for my kidneys. My neprologist gets a bit uptight at times because my liver functions go up and he thinks it is auto immune hepatitis but only mild to moderate. It is a tightrope we are on and even the smallest thing can knock us off and it takes so long to get back up . Good luck to everyone. Ron.


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## normawood

I was put on colestid for bile acid diarrhea and concurrently had a workup for small intestinal bacterial overgrowth which was negative. Colestid 1 gram before bedtime and on awakening has decreased my BMs from 5 a day, with at least one during the day being quite urgent, to 2-3 a morning, which is more manageable.


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## fuzzy butterfly

Hi i take a generic firm of questran . One sachet a day one loperimide. It keeps me fairly 'normal' 1-2 poops aday usualy soft formed with occasional looser more watery days. That may be dependant on what iv eaten or drank. Urgency can still be an issue sometimes tho.Not noticed any side effects as yet . Best wishes to you all. Hope you find what works for you.


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## HorseAngel

I'm crying I'm so happy to have found your group! I was just diagnosed with Primary Sclerosing Cholangitis as a complication of my Crohn's disease. My liver, common ducts and gallbladder are now being attacked with contrast bile and inflammation. I'm just so relieved to have found you all to read your stories. With my crohns I knew what to expect and now I don't and for the first time with my disease, I'm scared. (I'm also fed up with bile taste in my throat/mouth and bile smelling poo).


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## fuzzy butterfly

Aw bless you, so sorry you have all that to contend with.. Glad you have found us to. I must say that it is a great group of people here. Always happy to help each other. I hope things get better for you soon. Take care and best wishes.


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## Aaahs

HorseAngel said:


> I'm crying I'm so happy to have found your group! I was just diagnosed with Primary Sclerosing Cholangitis as a complication of my Crohn's disease. My liver, common ducts and gallbladder are now being attacked with contrast bile and inflammation. I'm just so relieved to have found you all to read your stories. With my crohns I knew what to expect and now I don't and for the first time with my disease, I'm scared. (I'm also fed up with bile taste in my throat/mouth and bile smelling poo).


I'm glad you found us too, HorseAngel! I've had PSC for Yrs. now. I saw a liver specialist for several yrs. but my elevating Alk. Phos. leveled off and has stayed that way for over 10 yrs. so there is definitely hope on that front. How old are you? I started out with severe Crohn's D. when I was in college & have continuously had one complication after another. I am now 63 and still fighting challenges so don't despair or give up. Good luck with all and feel free to discuss your fears here.  Knowing you aren't the only person having miserable problems helps a lot.


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## Spooky1

Welcome, HorseAngel, yep, we know what it's like.  Not the illness of choice is it?  Sorry, but at least we are all here and in support of each other, and now you.  As Aaahs said discuss whatever you like on here.  It's a good support group that is awake 24/7 and we've all got IBD.  We're often a lot more understanding that the medical teams that deal with us.


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## ron50

What I feared would happen is happening. My dose of oxycodone has fallen from 40mg twice a day to 5mg once a day. Another two weeks and I will be off it. Surprisingly I am suffering worse from withdrawel now than at any time during the taper. I no longer suffer from opiate induced constipation and once again D has started big time. A couple of weeks ago my nephrologist gave me a major check up and found that my legs were filled with fluid (peripheral oedema) as were my lungs(pulmonary oedema). He immediately put me on double diuretics and a fluid limit of a litre a day and sent me for cardio ultrasound. I don't get the results for another week. With only a litre of fluid input ,diuretics twice a day ,constant D and oxy withdrawel symptoms I have not felt this bad for years.. I still have some sachets of questran lite and I don't think I have much choice but to go back on it. The one problem with questran is that it can also bind the medications you are taking so you have to make sure that there is at least a two hour interval between taking your meds and using questran. With all that is happening I find that my sleep is terribly disturbed. I wake up finally with by bed sheets in a knot and as tired as when I went to bed . My neph thought he could hear a heart murmur when he checked me. He said it sounded like a leaky valve and that he thought the problem is congestive heart failure which makes you tired at the best of times. I am really feeling as tho I can't hang on much longer particularly with the low oxygen with the pulmonary oedema. I don't know how much more can go wrong before my systems just quits. We did a tally of my chronic conditions and I am up to 19 many of them life threatening. Ron.


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## SMSIRL

Hi Ron ,

Because of the complex nature of your situation, you need to consult a Cardiologist if you are not doing so already. For example opiates have a very complex relationship to cardio-pulmonary function. On one hand they can suppress breathing, while on the other they may have vasodilator effects which may be beneficial to certain cardiogenic causes of pulmonary oedema. Similarly, loop diuretics can be helpful in certain cases. Specific vasodilators may be useful, but blood pressure needs to be adequate - opiates can supress the blood pressure [indeed this might imply part of unfeeling well is a complex relationship to your tapering of opiate - so you might benefit by the use of vasodilators to balance the reduction in opiates], while diuretics supress blood pressure - which would careful management in the context of vasodilators. What I hope to get across is that it may well be that having a specialist eye on the various elements may well have large payoff - correct medical therapy can have a significant and rapid positive effect on your symptoms, so please hang in there [I know it is easy to say, and hard to do - and I am not exactly the best example of such patience].

In any event, what is needed is a definitive diagnosis and an aetiology (cause)/aetiologies. The latter may point to a definitive treatment. It may be possible to achieve a surgically definitive approach once the cause is known. For example certain valves can be replaced using minimal invasive techniques. The nature of the traditional open-chest approach once prevented people with significant disease from availing of valve replacement. Now with TAVI, Transcatheter Aortic Valve Implantation, even very sick and very elderly patients (late 90's) have been successfully treated. You might find in treating the cause, other medical issues may well be alleviated.

Anyway, I hope you can get relief from what is a very difficult situation.


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## ron50

Thanks SMSIRL   my GP wanted to put me on spiriva as he thought my problem was copd. The oxy was basically to try and help with the pain from severe motor sensory peripheral neuropathy of both legs believed to be a legacy of stage3c colon cancer 18 years ago. I also suffer nephrotic syndrome of the kidneys . I lose over seven grams or protein a day thru my urine. I have had three kidney biopsies and the results don't relate to any of the known kidney diseases and again one of the chemo agents I was on is the suspected cause. My first nephrologist was a novice and his diagnoses was way off. He diagnosed me with minimal change disease and treated me with 75 mg daily of prednisone for over 18 months. I t put me into type two diabetes and badly degraded my spine. My gp decided to use targin as there are very few pain killers that are kidney friendly. I had been thru Lyrica, Neurontin, endep , norspan and fentanyl patches. They either did not work or caused problems. The targin worked for two years then the pain came back double . They decided to stop it . I asked a pharmacist for advice and he suggested a 36 week taper, my gp agreed and I am nearly there. The pain is fairly brutal. I take cyclosporine twice a day for my kidneys and take 5 blood pressure tablets a day. The bile salt malabsorption is from gall bladder surgery  ten years ago. I have used cholestramyne  successfully to counteract bile salt malabsorption and the dreaded D.I have been to a cardiologist. He put a holter monitor on me . In 24 hrs I recorded a little over ten thousand premature ectopic ventricular and atrial beats as well as several runs of tachycardia. The cardiologist repeated the tests a year later and made a statement that if it had not killed me yet it probably would not. Very scientific dx. I suffer from sleep apnea and although I don't stop breathing my oxygen drops into the 80% range in rem sleep. I have been on cpap for a year and a quarter . They told me I would feel like a new man but I wake up at six am and sit on the edge of the bed. I look at the alarm again and it is six fortyfive. I have been asleep sitting up on the edge of the bed. Very disconcerting. Ron.


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## Ann Morgan

Ron : I have been taking the Questran packets twice a day for several years now. I take my morning medications. Then I wait 2 hours and take one Questran packet. Then I wait 3 hours and I take my afternoon medications. Then I wait 2 hours and take one more Questran packet. 3 hours after that, I take my bedtime medications. When I am not at home and doing other things I have to constantly be on my medication schedule.  Yes, I have been told that Questran can inhibit the absorption of medications. If I do not take the Questran I get very, very sick. I cannot even miss a dose. My sleep is terrible.  Thanks for listening.


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## Ann Morgan

I don't recall ANY of my doctors telling me I have BAM, but my Primary Care Physician from several years back started me on Questran and I am still taking it. 

My story :
1992 : Anal Fistulectomy. 1995: Laparascopic Cholestectomy. 1997 : Started to have yellow, watery diarrhea. 2002 : Rectal Abscess surgery. 2006 : Finally a diagnosis, Ulcerative Colitis. 2009 : Rectal Abscess Surgery. I currently take Lialda and Questran. And a Probiotic. 

I cannot eat fruits, vegetables or grease/fats. I have not been able to eat shellfish or seafood for years and years. I cannot eat eggs either. Thanks for listening.


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## SCookie

Hi. I am very new to this forum but have just been diagnosed with bam this week. I've had Crohns since 1998 and have been up and down during that time. This last year has been challenging and not been able to get symptoms to settle - mostly frequent diarrhoea very quickly after eating any food. My consultant has upped my azathiaprene dose twice and then sent me for tracer scan and Mri. No results from the mri yet but the bile test came back as positive. I was started on Colestramine three days ago. Been very positive about it and hoping it'll settle things down as I darent eat and then leave the house at present. I guess it's a bit early to see any considerable improvements but a little more solid I think! However the last two days I have had low cramps and pains which I wasn't having before. Could this just be things solidifying a bit and system needs to get used to it again or a reaction to the new meds? Any help, advice or your experiences would be greatly received  and thanks for being here. It's good to know there are people out there who understand what it's like. Cheers


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## Luc44

Hello everyone,
My name is Lucille and I have recently been diagnosed with BAM, it took years for them to find out what was wrong 
I have had IBS for 20 years and had my gall bladder removed about 6 years ago
After having every possible medication for IBS which didn't work I was given Questran after my diagnosis which I couldn't tolerate. I am now on Cholestagel (Colesevelam) which initially improved my symptoms but now, having taken it for about 6 weeks, my symptoms are starting to return
Does anyone know how long I should persevere with them please??
Also my bottom is itchy a lot and gets sore and I wonder if anyone has any ideas of how to make it feel better??
Many thanks Lucille


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## Ali29

Hi Luc44,

Triple Paste Medicated Ointment (similar to desitin) works great in that area.

I've tried the Questran - bad reaction.   Not sure how long you have to give those meds to see if they work better as time passes.   I've heard of people trying Psyllium Husk which you can buy over the counter at health stores.  I'm currently trying Enteragam and is showing some promise.  Constant and urgent diarrhea is a very difficult way to live.

Good luck and welcome!


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## SCookie

Hi. I wondered if anyone had any advice or help regarding Colestramine. I started on this just over two weeks ago following positive bam test. Things were great and each day I seemed to improve. I upped to two sachets a week ago and had a good week last week and beginning to think I was getting my life back.  On Friday, however, things gone downhill again for no apparent reason. I didn't eat anything risky and there seems to be no reason. I upped again to three sachets this weekend but things not settled. Feel pretty fed up. I really thought I was getting somewhere. Has anyone else experienced this?


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## fuzzy butterfly

Hi im on the same thing as you.. i manage pretty ok on one satchet a day mostly. I do tho have odd days were i go all loose again. My doc says i do really well getting away for the most part with only one a day, as some people have to take up to 6 a day. I think you may have to up the dose by a satchet every week n see how it works. Please check with and speak to your doctor about it first tho. 
Best wishes


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## SCookie

Thanks for the reply. I thought I might get away with only two sachets a day as last week was so much better but it seems not. Still waiting for recent MRI results so may be something more going on.


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## fuzzy butterfly

No worries.. ah right ye it may be something else of course. Once you get your results you will have more info and can take things from there. 
Hope all works out ok for you . Please let us know how you get on. Best wishes :hug:


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## highlandsrock

I reached the 5th anniversary of losing my stoma last Monday (13th June)  After the operation I had expected my digestive system to return to normal. Not a bit of it. IBD Relief asked if I would write a short article explaining the problem and how it was diagnosed. The link is below - 

Bile Acid Malabsorption - My Story

I have had several replies all along the lines - that describes my situation but BAM hs never been discussed. Just what do we have to do to raise awareness both in doctors and fellow IBD patients?


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## Ann Morgan

I have never been diagnosed with BAM, but I did not know where to ask this question. I had my gallbladder removed in 1995. I recently had an abdominal CT scan with IV contrast ( I was having stomach pain ). I read the report and everything looks fine, which is great. But it said....." The gallbladder us grossly normal", but I do not have a gallbladder !  Is anyone here familiar with the term "grossly normal" ?      Thanks for your help.


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## Ann Morgan

SCookie said:


> Hi. I wondered if anyone had any advice or help regarding Colestramine. I started on this just over two weeks ago following positive bam test. Things were great and each day I seemed to improve. I upped to two sachets a week ago and had a good week last week and beginning to think I was getting my life back.  On Friday, however, things gone downhill again for no apparent reason. I didn't eat anything risky and there seems to be no reason. I upped again to three sachets this weekend but things not settled. Feel pretty fed up. I really thought I was getting somewhere. Has anyone else experienced this?


I have been taking Cholestyramine for several years. I take 2 packets a day. If I skip even one dose I get really sick and suffer from yellow, watery diarrhea and sometimes naseua and dry heaves. I started suffering with the yellow, watery diarrhea in 1997. I was diagnosed with UC in 2006. I had my gallbladder removed in 1995. I could not live without my Cholestyramine.


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## Ann Morgan

Doesn't Cholestyramine inhibit the absorption of your medications ?   I never take my Cholestyramine at the same time as my pills. I have to time everything throughout the day, which gets very tiring.....I have to stay on a schedule.    Thanks for listening.


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## fuzzy butterfly

Hi.. ye it can affect your meds. I should take two satches a day but take one n a loperimide. Because i work i cant be bobbing off taking tablets around the timings of questran. I take it a half 5 am when i get up n my tablets start at 8-45 am.. thus i dont seem to lose effect from it . 
Best wishes to all


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## EmR

Hi all! I was diagnosed in 2014 after 8 years. Am happy at last to have a diagnosis and a treatment plan that works! I am having issues with work. So I wanted to ask: how many of you now officially term yourselves as disabled as defined under the Equality Act 2010?


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## Spooky1

Welcome, EmR,
I have disabilities, but along with Crohn's I have arthritis and get Iritis and also suffer depression.  Had a fight to get my DLA transferred to PIP but got it after welfare advocacy intervened for me.


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## LollyE74

It's now been 2 years since I was diagnosed with BAM.  I am still taking the Colestyramine.  On my last visit to the consultant (which was some time ago as my healthcare insurance stopped paying) I mentioned that although the Colestyramine was definitely helping to stop the frequent diarrhoea, that I was still feeling sick and bloated, crampy and windy.  He prescribed Colestagel (Colesevelam) tablets for me to try to see if I suffered less side effects but the tablets cost nearly £150 per month on the private prescription which I could not afford and my GP would not prescribe them.    I'm writing again as I am 2 years down the line and apart from not having the frequent diarrhoea, I am feeling as unwell as I ever have.  My stomach is permanently bloated and crampy and the noises it makes are audible to everyone in the office which is highly embarrassing.   Should I go and make a fuss at my GP surgery or do I just have to live with these symptoms?   Does anyone think I could have a secondary condition other than BAM which is causing the other symptoms?


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## Grant

Hi LollyE74, I dont understand why you're GP wont prescribe them. He would've had confirmation from your Gastro Specialist whether you saw the Specialist privately or through the NHS. Sounds to me like your GP is possibly holding the fact you went private against you. I'd see a different Dr @ your Surgery if possible. 
I'd also be inclined to try & get a consultation with as Specialist via the NHS. That would lead to an NHS prescription.
The very best of luck
Grant


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## LollyE74

highlandsrock said:


> Hi Lolly. Thanks for that link to the Oxford Journal. Very informative. If you haven't already seen this NICE report - https://www.nice.org.uk/guidance/dg7 - it contains some interesting information including how much the SeHCAT test costs to administer. I wonder if that has anything to do with why they are not used more widely.
> 
> So far I've managed to keep my symptoms under control just using 2 capsules of Loperamide a day. Have decided I don't want to try Questran or similar whilst I'm coping.
> 
> BTW - I see you're in London, are you under one of the big hospitals?


Sorry Highlandsrock I think I missed this when you originally posted it.  

My (then) employer sent me to see their retained doctor at the Holborn Medical Centre in Bloomsbury as they considered that I'd had "excessive absence" from work - 5 days in a 1 year period when my symptoms were too bad for me to leave the house!  HMC referred me to Professor David Silk (Princess Grace and Harley St) under my BUPA health insurance.  It was Prof. Silk who suspected I had BAM but I had lots of tests to rule out other conditions (family history of Bowel Cancer) which seriously ate into my outpatient allowance, along with a colonoscopy and polypectomy     I think one of my problems has been a lack of continuity of care as I had to stop seeing Prof Silk once I had to start paying for the (extortionately expensive) private appointments myself (which was very soon after the diagnosis).  I also struggled to pay the private prescription charges.  I managed to get my GP to eventually prescribe Questran so I could get it on the NHS but she wouldn't agree to prescribe Cholestagel [sp?] which the professor suggested I tried when I said  Questran left me bloated and uncomfortable.    I got seen quickly under my BUPA and I'm grateful I had it as I don't know if I'd have had the sehCat otherwise but I do wonder if I had I waited and pursued NHS referral whether I may have had better follow-up care.   I will need  another colonoscopy this year (I will need to have them on 3 yer cycles) and as I no longer have BUPA I will need my GP to arrange this.  I guess this would be a good opportunity to see if I can be referred to an NHS gastroenterologist instead.    

How are you getting on


----------



## Trischolar

I just wanted to say I am thankful for this thread and all of the info in it! I had most of my terminal ileum removed 12 years ago due to abscess and have mostly done pretty well. Had a colonoscopy done today because symptoms had gotten pretty bad again, but all was normal- no active disease. Doctor mentioned Bile Acid Malabsorption to me for the first time as a possible cause and is going to call in a prescription (not sure what yet) to see if helps. After reading up on this, it seems this could very well what has been keeping me miserable despite otherwise remission. Frequent diarrhea (6-7 times a day) especially after meal, often yellow/acidic, sometimes foamy, cramping. Hopefully this will make a difference. I have been a little stubborn about a lower fat diet as I also have Celiac disease which severely restricts diet. I used to say I would rather have a little diarrhea than not enjoy any food, but lately the "little" has progressed to a lot of discomfort so may have to try that too.


----------



## jonique

Trischolar said:


> I just wanted to say I am thankful for this thread and all of the info in it! I had most of my terminal ileum removed 12 years ago due to abscess and have mostly done pretty well. Had a colonoscopy done today because symptoms had gotten pretty bad again, but all was normal- no active disease. Doctor mentioned Bile Acid Malabsorption to me for the first time as a possible cause and is going to call in a prescription (not sure what yet) to see if helps. After reading up on this, it seems this could very well what has been keeping me miserable despite otherwise remission. Frequent diarrhea (6-7 times a day) especially after meal, often yellow/acidic, sometimes foamy, cramping. Hopefully this will make a difference. I have been a little stubborn about a lower fat diet as I also have Celiac disease which severely restricts diet. I used to say I would rather have a little diarrhea than not enjoy any food, but lately the "little" has progressed to a lot of discomfort so may have to try that too.


You have just described bile acids diarrhea so hopefully the doc will give you cholestyramine powder. You need to tinker with dosage.  I take one pack a day. If I miss or am late taking it, the diarrhea is back.  Taking the cholestyramine changed my life! 

Glad you have no active disease [emoji1]


----------



## Trischolar

I picked up the prescription today, Colestid tablets written for take 2 twice a day, but doc said to start with just once a day. Fingers crossed that it makes a difference!


----------



## happy

Trischolar,
I am tagging DustyKat as her daughter has found successful ways to manage this. I haven't seen her on the forum much lately, but hopefully she will respond.


----------



## highlandsrock

Finally taken the plunge and asked my GP for Colesevelam. Picked them up today. Just need to pluck up the courage to start them instead of my trusty old Loperamide capsules.


----------



## fuzzy butterfly

Hi...i started them a month back. Iv not had any trouble with them. Stools more normal than with loperamide too. Hope they suit you as well as they have me. Best of luck


----------



## nogutsnoglory

Anyone on questran with a narrowing or partial obstruction?


----------



## woodlandperegrine

*Some BAM questions*

Happy to find this forum. I lost about 60 cm (24 in.) of intestine, centered on the cecum, in a resection due to cancer. During a follow-up with my gastroenterologist about a year later, I complained about frequent explosive diarrhea. Apparently I was lucky, in that he immediately put me on Cholestyramine for BAM. For several years, I used it on an "as needed" basis and it really helped. I seemed to have flares and remissions. Suddenly lately, it's back with a vengeance. I thought I was going to collapse yesterday prior to a gut explosion. 

Question 1: Is it common to have periods of fare-up and periods of calm re: BAM symptoms?

I've been struggling with miserable chronic fatigue which has gotten demonstrably worse over the last year or so. I just read a research paper indicating that a lot of BAM patients experience serious fatigue.

Question 2: Has fatigue (unrelieved by sleep; perhaps accompanied by dizzyness, sore muscles, neck pain) been a problem for you? If so, has medication helped the fatigue?

At this point, I'm going to start taking cholestyramine daily. Based on advice earlier in this thread, I'll be sure not to take it close in time to other meds. Any other advice/comments? Thanks so much.


----------



## ron50

Hi Woodland,
              I am also a cancer survivor (stage3c colon). I had no problems with bam until I was hospitalised with acute pancreatitis. I have had ulcerative duodenitis and several peptic ulcers , but this time my gall bladder was the cause and it was removed. That was when the BAM really set in. I take cholestyramine as required. I have flares and periods of quiet. I always carry sachets of questran lite. I find the most reliable marker for a flare is when I eat a normal lunch and within an hour I am in the loo and continue to be all afternoon. When it occurs I take a sachet of questran in the morning before breakfast but at least an hour after I take all my morning meds. I have continuous chronic fatigue. I can wake up in the morning and sit on the side of the bed. When I next look at my alarm clock it is thirty minutes later and I have been asleep sitting up on the side of the bed. They suspected apnea but I have been on cpap for two and a half years with no improvement. I have a lot of long term side effects from my cancer chemo (next jan22 I end year 20 of survival post surgery) I still have follow up scopes for the cancer. This year they removed four polyps , the biggest eleven mm and they grew in only three years. I just have to accept my digestive tract is a train wreck and stay vigilant. Best wishes Ron.


----------



## highlandsrock

fuzzy butterfly said:


> Hi...i started them a month back. Iv not had any trouble with them. Stools more normal than with loperamide too. Hope they suit you as well as they have me. Best of luck


Still haven't started the Colesevelam because the last few weeks my digestive system has been pretty much normal, if anything constipated. Still taking 2 Loperamide a day but cannot understand how everything is well controlled despite the SeHCAT test showing severe BAM and a calprotectin level of 851 and rising. My body is a total mystery!


----------



## fuzzy butterfly

Hi...bodies are a mystery most of the time. Never behave as they should !!
Have you spoke with your GI and  asked if you can stay on loperimide or if you should change over any way? 

Wishing you all the best


----------



## highlandsrock

Thanx. I asked my consultant exactly that and he said "if you're OK on such a low dose of Loperamide stick with it" but suggested I go and see my GP to get a prescription for Colesevelam "just in case". He mentioned that some of his patients were on 20 capsules a day! I read recently that opiod addicts are now using Loperamide to get high but they have to take 50 capsules in one go. Can't imagine what havoc it must be playing with their guts


----------



## fuzzy butterfly

Omg... no me neither mate!!
I seem to be doing fine on six capsules (colesevelam)a day. If i get a bit constipated i drop to four for a day. Im told to take six in one go , but i take two 3 times a day. As long as you have the recommend daily dose. I dont think it makes any difference, if you have it split up or in one go.
Maybe a good idea to get some in just incase as your GI said. I did ok on loperimide but much better on coleseveram. Of course it is up to you and your doctors to make the decsion what you take in the end. Im just telling you how iv been with it...
Hope what ever you decide to use keeps things as"normal" on the bowel movement front as possible for you . 
Take care..


----------



## The Real MC

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).

I knew that the GB regulated the bile to help the piping digest fatty foods, and without it my bile wouldn't be regulated.  Since the surgery I had cut way back on saturated fats and eating out.  I isolated "the burns" to foods with saturated fats, and when they were reduced "the burns" were less frequent.  Coffee is a wild card though!  Diet does make a difference - avoided prescriptions.  I wish others were so lucky...


----------



## highlandsrock

The Real MC said:


> 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/donald-no-not-that-one/


----------



## The Real MC

highlandsrock said:


> were you warned before surgery that loss of terminal ieum means it is pretty much a certainty you will end up with bam?


nope


----------



## woodlandperegrine

My colon cancer surgeon told me I wouldn't even miss the 2 feet of small & large intestine he was removing.


----------



## BlueSky

I was told that I would need B-12 shots for life, but that was it.


----------



## highlandsrock

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


----------



## ronroush7

I don't remember being told anything about them taking the terminal ileum or anything about bile acid.


----------



## woodlandperegrine

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?


----------



## ronroush7

I would let your doctor know what is going on, woodlandperegrine


----------



## woodlandperegrine

Thanks, ronroush7. I came to the same conclusion and made an appointment for tomorrow.


----------



## ronroush7

Part of my bm was milky.  Does this mean there is a problem with the bike acid?   What does that mean?


----------



## Spooky1

Mines generally green with bile malabsorption.


----------



## RickS

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.


----------



## DEmberton

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.


----------



## emmaaaargh

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.


----------



## RickS

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.


----------



## ron50

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.


----------



## Spooky1

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.


----------



## Lynda Lynda

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.


----------



## Spooky1

Sounds a lot like you have BAM, Lynda.  Just out of interest does your brand have aspartame in it?


----------



## n00b

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!


----------



## Spooky1

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.


----------



## Lynda Lynda

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.


----------



## ron50

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.


----------



## Lynda Lynda

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 ):ywow:


----------



## Spooky1

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.


----------



## ronroush7

Sometimes I get hungry soon after eating.   Is this connected to bile acid malabsorption?


----------



## Spooky1

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.


----------



## ronroush7

Spooky1 said:


> 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


----------



## Lynda Lynda

Gastric Dumping Syndrome ? Yikes, I think I had that at 3pm today !  :ack:


----------



## Lynda Lynda

Spooky1 said:


> Mines generally green with bile malabsorption.


Mine is yellow-ish.


----------



## Lynda Lynda

Spooky1 said:


> 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.


I try to space out my Questran as long as I can because I think one of my regular medications is delayed release or time-release or something like that.


----------



## Lynda Lynda

Correction : "Sustained Release." 
 I will research "sustained release" tomorrow.


----------



## ronroush7

I just found out from my doctor's office that the Colestid they have me on is supposed to help with the bile acid malabsorption.


----------



## Lynda Lynda

ronroush7 said:


> I just found out from my doctor's office that the Colestid they have me on is supposed to help with the bile acid malabsorption.


Hope you feel better soon.


----------



## ronroush7

Thanks


----------



## Lynda Lynda

I hate drinking this Cholestyramine Powder.


----------



## Lynda Lynda

Spooky1 said:


> Sounds a lot like you have BAM, Lynda.  Just out of interest does your brand have aspartame in it?


No aspartame as fat as I know. 
It is not labeled "light/lite.

How's it going this week for you ?  :Flower:


----------



## Lynda Lynda

No one posts anything on here, but I will ask anyhow. 

I have been taking Cholestyramine Powder for years now and it works for me. The co-pay cost is getting expensive. Do some people take medicine in a pill form as a bile acid sequestrant ?  As far as I know the pills my insurance company recommended are "statins" for lowering cholesterol and NOT bile acid sequestrants. 

My PCP doctor has never mentioned an alternative to the Questran. I use Questran as a bile acid sequestrant NOT for lowering cholesterol. 

My insurance company denied my tier exception request because I have never taken any other medication BEFORE the Questran that failed. 

I am getting a headache trying to figure this out. I called a phone number my insurance company gave me for prescription assistance and I did not qualify for their program. How many phone numbers do I have to call.  

Should I call Medicare or SSD. Every phone call is 15 minutes long with the person on the other end of the phone line not helping me.....just asking me my address and stuff like that. Stupid. 

I get denied for things because my monthly benefits are too high, believe it or not. I do not qualify for our State Health Insurance or Food Stamps because my monthly benefits are too high. 

This Cholestyramine Powder cost me $95 a month !  So, I am being penalized for having a good job with decent pay while I was still working ?

I am not spending all day tomorrow calling organizations for help because they will ask for my "income" and say "no."

I see my GI tomorrow at 3pm to talk about Humira. I could ask him about the Cholestyramine Powder too, but he is really busy and appointments are short.


----------



## ronroush7

Lynda Lynda said:


> No one posts anything on here, but I will ask anyhow.
> 
> I have been taking Cholestyramine Powder for years now and it works for me. The co-pay cost is getting expensive. Do some people take medicine in a pill form as a bile acid sequestrant ?  As far as I know the pills my insurance company recommended are "statins" for lowering cholesterol and NOT bile acid sequestrants.
> 
> My PCP doctor has never mentioned an alternative to the Questran. I use Questran as a bile acid sequestrant NOT for lowering cholesterol.
> 
> My insurance company denied my tier exception request because I have never taken any other medication BEFORE the Questran that failed.
> 
> I am getting a headache trying to figure this out. I called a phone number my insurance company gave me for prescription assistance and I did not qualify for their program. How many phone numbers do I have to call.
> 
> Should I call Medicare or SSD. Every phone call is 15 minutes long with the person on the other end of the phone line not helping me.....just asking me my address and stuff like that. Stupid.
> 
> I get denied for things because my monthly benefits are too high, believe it or not. I do not qualify for our State Health Insurance or Food Stamps because my monthly benefits are too high.
> 
> This Cholestyramine Powder cost me $95 a month !  So, I am being penalized for having a good job with decent pay while I was still working ?
> 
> I am not spending all day tomorrow calling organizations for help because they will ask for my "income" and say "no."
> 
> I see my GI tomorrow at 3pm to talk about Humira. I could ask him about the Cholestyramine Powder too, but he is really busy and appointments are short.


I take Colestid for the bike acid malabsorption, Lynda, but I have read that it is good for cholesterol.


----------



## Lynda Lynda

I may call the manufacturer of my Cholestyramine Powder tomorrow to see if they have any discounts or programs to help with the cost. 
I get so much anxiety from all these phone calls, especially if I have to call my insurance company.


Take Care. 
Lynda


----------



## Spooky1

I'm British, Lynda, so i don't know and cannot advise on your issues.  However, i do have the worst chemist dispenser going.  It's been two weeks without him able to order my liquid food sachets.  My Crohn's is getting far worse having to try and survive on potatoes and salmon.  Not good.  He has also under delivered my liquid feed on 5 occasions this year so i have had to eeke it out.  I'm under nourished as it is.  Now he's accusing me of lying about how much he put into my car each time  (I cannot carry it home physically).  So he gave me the nastiest 'I don't believe how much i haven't delivered to your car each month look)  i'm feeling guilty whilst having to go without what he under delivered to my car.  There i was thinking, 'i swear he's sending it to a starving families in India.  I feel so bad about his mistakes.  I think i have an answer to his nastiness, i have my dietician who cohorts with my GP's.  i will get her to sort this.  I hope.  And good luck to you Lynda, i know how tough this unhealthy life of ours is.  I'm praying for you.


----------



## ronroush7

Spooky1 said:


> I'm British, Lynda, so i don't know and cannot advise on your issues.  However, i do have the worst chemist dispenser going.  It's been two weeks without him able to order my liquid food sachets.  My Crohn's is getting far worse having to try and survive on potatoes and salmon.  Not good.  He has also under delivered my liquid feed on 5 occasions this year so i have had to eeke it out.  I'm under nourished as it is.  Now he's accusing me of lying about how much he put into my car each time  (I cannot carry it home physically).  So he gave me the nastiest 'I don't believe how much i haven't delivered to your car each month look)  i'm feeling guilty whilst having to go without what he under delivered to my car.  There i was thinking, 'i swear he's sending it to a starving families in India.  I feel so bad about his mistakes.  I think i have an answer to his nastiness, i have my dietician who cohorts with my GP's.  i will get her to sort this.  I hope.  And good luck to you Lynda, i know how tough this unhealthy life of ours is.  I'm praying for you.


Hope you get things sorted out soon and feel better.   Prayers


----------



## Lynda Lynda

Spooky1 said:


> I'm British, Lynda, so i don't know and cannot advise on your issues.  However, i do have the worst chemist dispenser going.  It's been two weeks without him able to order my liquid food sachets.  My Crohn's is getting far worse having to try and survive on potatoes and salmon.  Not good.  He has also under delivered my liquid feed on 5 occasions this year so i have had to eeke it out.  I'm under nourished as it is.  Now he's accusing me of lying about how much he put into my car each time  (I cannot carry it home physically).  So he gave me the nastiest 'I don't believe how much i haven't delivered to your car each month look)  i'm feeling guilty whilst having to go without what he under delivered to my car.  There i was thinking, 'i swear he's sending it to a starving families in India.  I feel so bad about his mistakes.  I think i have an answer to his nastiness, i have my dietician who cohorts with my GP's.  i will get her to sort this.  I hope.  And good luck to you Lynda, i know how tough this unhealthy life of ours is.  I'm praying for you.


Give me the address to this chemist and I will go there !!
I'm short, but feisty!!    

Praying that you and your doctors and chemist get this all figured out.


----------



## Spooky1

Well, Lynda, you've really made me laugh today.  Thanks for that.  Hope all your issues are  sorted soon too.


----------



## ron50

I was originally prescribed Questran light years ago as part of an old regime of cholesterol control. I took it in conjunction with a statin called Lescol.  The questran binds the bile acids including cholesterol released by the liver. It was not until I had my gall bladder removed that I started getting bile acid Diahorreah. I was advised to take Questran to relieve that. I now only take it when I have a flare. It is wise to brush your teeth after taking questran it is quite corrosive to tooth enamel. Ron.


----------



## Lynda Lynda

Happy Summer.


----------



## Spooky1

You too, but don't get too hot or you'll end up with prickly heat, just like a cactus.


----------



## mtngrl

RE: Lodalis 625mg  tablet once a day. It has to be 4 hours before other meds. Excellent results. I researched then talked to my pharmacist about Lodalis (Colesevelam).  My GP had never heard of it but called my Pharmacist and ordered it for me.  It is similar to Questran.  I've been on it for two months and my life has definitely changed for the better.  I still watch my fat intake, avoid chocolate (my personal kryptonite) and dairy.  I am able to plan more activities in the morning, my worst time of day, and I have basically no pain now.  I do use an Immodium or two if I cheat on my diet, down from 4 to 6 pills and the major gas that results from taking Immodium.    I hope this helps someone, I wish I'd known about Lodalis sooner.

History: Along with gallbladder,  I have had cecum and ileum removal, another surgery to repair a stricture at the site of the original resection  equalling about 3.5 feet of intestine removed.  It has been 11 years now of dealing with dumping syndrome. I had tried Questran=headaches, probiotics=definitely helped, calcium=helped but I got recurring tonsiliths.  Without Lodalis I was unable to leave the house if I took acetaminophen-the only painkiller that I don't have a GI intolerance.


----------



## chacaruso

I had my gallbladder removed 2017 and 2 years later I'm out of work on disability due to bile acid malabsorption.  I tried Questran which I had to stop because it caused severe heartburn.  Currently on Bentyl for cramping however it really has little effect.  I'm learning about taking Magnesium Glycinate for the cramps, activated charcoal for the gas, Karlovy Mineral Water to alkaline the body and psyllium husk capsules multiple times a day along with beans as natural bile binders.  Just starting this routine as in the past month and a half the doctors have not been able to help me at all other then taking tests that all show normal results.


----------



## mtngrl

I've been using Lodalis(colysevelam) for a few months, it works well.  I only use one tablet every other day if I'm not having a lot of fatty food.  Far fewer side effects than Questran but severe nausea and pain if you don't drink enough water with it.


----------



## AlpacaHunter

Hola everyone,

I have this awful stuff
It flares up and then randomly goes away and then I am constipated from the meds. It is a hell ride to be sure. I have always had a fussy GI tract but last year I started with the yellow acid diarrhea. They assumed it was my gall bladder so they took it out. It wasn't my gall bladder. My symptoms were the same just more frequent. I started to lose weight on top of it. I just recently started the cholestramyine after seeing a new GI doctor. It does help but the intermittent nature of this makes me constipated. I always feel like I have some GI  infection of some sort. My stomach seems to be spared for the most part except for the gastritis I got from the PPI the doctor put me on after assuming I just had heart burn. That is better now luckily. A good friend of mine has Crohns and my cousin had it. My friend says I am seem like her before she was diagnosed with Crohns.

I am also likely to start treatment for SIBO soon as well.


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## Grant

Hi everyone. I've been on Questran for nearly 9 yrs now, but just lately the bloating has been terrible. I've seen on the net to take it with food. So I've been taking with lunch & dinner, its a slight improvement. But evenings are pretty bad still, even if I could go out I wouldn't because of the bloating. My question is to others using it for diarrohea is when do you take it? Do you use the full sachet or maybe just half of it. I would really love to know the secret to using Questran without getting the terrible bloating & gas.
Tks & Rgds
Grant


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## Grant

Anyone?? Could really do with some advice/hear what others do? 
Help please
Grant


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## Lynda Lynda

Grant said:


> Anyone?? Could really do with some advice/hear what others do?
> Help please
> Grant


I know the above post is old, but.... 

I have been taking Cholestyramine Powder for 20 years. Here is my routine. 
Take my morning medications, wait 3 hours, take 1 packet Cholestyramine, wait 3 hours, take afternoon medications, wait 3 hours, take my second Cholestyramine packet, wait 3 hours, take bedtime medications. This is every single day. 

It's best to read the Cholestyramine box for the instructions and also bring the subject up when visiting the doctor who prescribed it for you. 

I didn't take my Cholestyramine at all on Thanksgiving Day last year and I ended up having gushing watery diarrhea, vomiting and dry heaves. I had to go to the Emergency Room. I can't even skip one dose. 

For bloating, I take Extra Strength Gaviscon. I chew 2 tablets and drink some water. This either makes me belch / burp or pass air /  gas. Either way, it relieves the pressure / bloating.
It works well for me to avoid acid from coming up my throat due to my acid reflux. I also take a prescription medication for reflux. 

Take Care and Be Well


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