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


 
03-31-2014, 12:55 PM   #31
Ruann380
 
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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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04-18-2014, 07:07 PM   #32
Ali29
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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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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.

Last edited by Ali29; 04-19-2014 at 11:38 AM. Reason: adding info
05-13-2014, 08:45 PM   #33
ElizabethInDallas
 
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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....
05-14-2014, 11:11 AM   #34
huffpz6410
 
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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.
05-14-2014, 12:37 PM   #35
Ali29
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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!
05-15-2014, 08:59 AM   #36
huffpz6410
 
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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?
08-11-2014, 03:39 PM   #37
highlandsrock
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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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08-11-2014, 06:20 PM   #38
Ali29
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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!!
08-12-2014, 03:46 AM   #39
Spooky1
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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.
08-12-2014, 12:20 PM   #40
rob101
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Have you tried Colestid ( The plain version)it doesn't contain aspartame, only the orange flavoured one does.
08-12-2014, 12:56 PM   #41
Spooky1
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Sounds just what I need, Rob. Thanks, will be on the phone to the ibd nurses tomorrow.
08-13-2014, 09:26 AM   #42
huffpz6410
 
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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?
08-13-2014, 09:52 AM   #43
rob101
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Hi Spooky1 did you manage to get hold of the Colestid (colestapol) ?
08-13-2014, 10:14 AM   #44
Spooky1
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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.
08-13-2014, 08:16 PM   #45
Ann Morgan
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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.
08-14-2014, 03:56 AM   #46
Spooky1
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Wow, that really is being left in the dark. I'm astonished. poor you. If doc refuses questran find another doc.
08-19-2014, 06:07 PM   #47
Ann Morgan
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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.
08-19-2014, 07:11 PM   #48
Ann Morgan
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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.
08-29-2014, 08:13 AM   #49
Moogle33
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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.
08-29-2014, 09:01 AM   #50
highlandsrock
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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?
08-29-2014, 05:14 PM   #51
Ann Morgan
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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. :-)
09-11-2014, 06:08 PM   #52
Ann Morgan
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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.
09-12-2014, 09:00 AM   #53
Spooky1
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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.
09-13-2014, 05:27 PM   #54
Ann Morgan
Senior Member
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.
09-14-2014, 09:51 AM   #55
Spooky1
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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.
09-15-2014, 05:04 PM   #56
highlandsrock
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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'.
09-15-2014, 05:35 PM   #57
Ann Morgan
Senior Member
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.

Last edited by Ann Morgan; 09-15-2014 at 05:40 PM. Reason: I am a perfectionist !
09-16-2014, 05:29 AM   #58
Spooky1
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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.
09-16-2014, 07:20 PM   #59
Ann Morgan
Senior Member
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.

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.

Last edited by Ann Morgan; 09-16-2014 at 07:40 PM.
10-04-2014, 05:15 PM   #60
highlandsrock
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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...er-things.html
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