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10-05-2014, 09:43 PM   #61
Ann Morgan
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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.
10-06-2014, 01:43 AM   #62
highlandsrock
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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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10-07-2014, 01:52 PM   #63
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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
10-07-2014, 05:27 PM   #64
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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
10-07-2014, 05:30 PM   #65
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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.
10-10-2014, 06:45 PM   #66
Ann Morgan
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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.
10-13-2014, 02:39 PM   #67
highlandsrock
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Are there any foods that make the symptoms of Bile Acid Malabsorption worse? For instance, that may stimulate to body to produce more acid?
11-01-2014, 11:07 PM   #68
Ann Morgan
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How is a bile malabsorption test performed ?
11-02-2014, 02:50 AM   #69
highlandsrock
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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
11-02-2014, 09:05 AM   #70
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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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11-24-2014, 05:11 PM   #71
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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?
11-24-2014, 05:15 PM   #72
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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.
11-24-2014, 05:32 PM   #73
Ann Morgan
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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.
11-24-2014, 10:35 PM   #74
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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!
02-18-2015, 11:40 PM   #75
Ann Morgan
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Is Questran used exclusively for Bile acid Malabsorption ?
02-25-2015, 12:34 PM   #76
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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.
02-25-2015, 12:38 PM   #77
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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.
02-25-2015, 01:18 PM   #78
Ali29
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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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Diagnosises - Mast Cell Activation Disorder, IBD Small Intestine-duodenum-villi blunted, Bile Acid/Fat Malabsorption, Chronic nausea-vomiting/pain, esophageal dismotility, mucosal edema, acid hypersecretion, Lymphocytic Colitis, Ocular Migraines, gallbladder removed

Current Meds: H1 H2 Anti Histamines, PPI, Enteragam, Lomotil, Phenergan, Percoset

Meds that did not work: Pentasa, Lialda, Zenpep, Entocort EC, Carafate, Elavil, Lotronex, Desipramine, Questran/Welchol severe bloating/pain.
02-26-2015, 04:24 AM   #79
highlandsrock
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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.
03-03-2015, 08:26 AM   #80
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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.
03-05-2015, 06:08 AM   #81
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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 Crohnís/surgery cholesterol wonít 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 ainít broke donít fix it!

Dusty. xxx
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03-05-2015, 03:30 PM   #82
highlandsrock
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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.....
03-08-2015, 06:07 PM   #83
Ann Morgan
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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.
03-08-2015, 06:15 PM   #84
Ann Morgan
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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.
03-29-2015, 07:10 AM   #85
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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
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
03-29-2015, 09:17 AM   #86
highlandsrock
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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
03-29-2015, 03:23 PM   #87
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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.

Last edited by Kerry1st; 03-29-2015 at 03:55 PM. Reason: Mistakes
04-15-2015, 07:03 PM   #88
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Hello all! I have suffered with this for the last 15 years! 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!!!
05-21-2015, 05:45 AM   #89
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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
05-21-2015, 10:29 AM   #90
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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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