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Bile Acid Malabsorption Support Group

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!
 
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.
 
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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Location
Texas
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!!
 
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.
 
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?
 
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
 
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.
 
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.
 
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. โ˜บ๐Ÿ’•
 
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).
 
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. โ˜บ๐Ÿ’–
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
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. :)
 
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
 
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 ๐Ÿ˜ž๐Ÿ˜ž
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
 
Location
Texas
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!
 
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?
 
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 ๐Ÿ’•
 
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.
 
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:๐Ÿ’•
 
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?
 
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.
 
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.
 
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.
 
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 ๐Ÿ’•๐Ÿ’•
 
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?
 
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.
 
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 ยฃ150 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?
 
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
 
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
 
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.
 
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]
 
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!
 
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.
 
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.
 
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 ๐Ÿ’•
 
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.
 
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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.
 
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 ๐Ÿ’•
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!
 
Hi...bodies are a mystery most of the time. Never behave as they should !!๐Ÿ˜•
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 ๐Ÿ’•
 
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
 
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..๐Ÿ’•
 
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...
 
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/
 
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
 
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?
 
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.
 
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

Moderator
Staff member
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.
 
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.
 
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.
 
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

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I have been taking 2 Cholestyramine Packets a day for probably 13 years. If I do not take the Cholestyramine I get very sick with yellow watery diarrhea, nausea and vomiting and sometimes dry heaves. I have had to adjust / lower my dose occassionally when I was actually having issues with constipation. I have never been told I have BAM.
 
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!
 
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

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I've been taking cholestyramine powder for 13 years and it has a disgusting taste and texture. I will have to check the label to see if it contains aspartame. I never eat anything with sweeteners made from sugar alcohols because those sweeteners can cause diarrhea, such as Mannitol and sorbitol and Xylitol Etc. I don't like artificial sweeteners even though sugar isn't the greatest thing to eat either. Take care and hope you all feel better.
 
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

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Yes, brush your teeth afterwards ! Yeah, I have to have a pretty rigid medication schedule because the Questran can inhibit the absorption of medications and I take several medications every day. For example : Morning medications, wait 3 hours, Questran, wait 3 hours, afternoon medication, wait 3 hours, Questran, wait 3 hours, bed-time medications. ( Yikes ):ywow:
 
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.
 

Lynda Lynda

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Questran needs to be taken 1 hour after meds and no meds for 4 hours afterwards as it says on my info sheet.

Ron, that's what knackered the enamel on my teeth! The teeth were disgusting I paid for veneers which lasted 11/12 years. Now I got partial dentures. Thought it was the steroids.
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.
 
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

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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.
 
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

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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
 
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.
 
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

Senior Member
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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!! ๐Ÿ˜ก

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