IBS / bile acid malabsorption

This is definitely the right place for this post.  So many of us are just told we have ibs which is made worse by stress and worry. So basically what they are saying to us is pull yourself together don't worry about it.

Glad you have atleast found out something other than ibs.

Take care and keep in touch

Sarah

Hi what is the name of the bike acid malabsorption test please? I wonder if we can order one ourselves through the labs? Thanks

I also have BAM, and like you was sick for 10 years before they SeHCAT scanned me.

I have been investigating this ilness, and is very interested in the research done by Julian Walters (http://www.imperial.ac.uk/people/julian.walters)

He's probably our only hope, and he is linking BAM to a gene error in a hormone called FGF19, which among other things limits the production of Bile Acid, so hes idea is that we don't have BA Malabsorbation, but rather BA overproduction.

Go get your blod glycosys measured, lack of FGF19 may also show up as a (IMHO) mis-diagnosis of diabetes.

Bile Acids are produced to help dissolve Fats in the intestine, so the best cure I have found so far is to just not eat fat. One of Julians latest papers talks about eating less then 45g of fat per day, which will take 30-40% off the symptmes.

Try and live fat-free for a while, I promise you will feel better.

In denmark we have a drug, Imolope which is for stopping diarrhoea. I take two pills 3-4hours before getting on an airplane, which used to be the worst situration I would find myself in. Taking the pills works for me, and makes flying bearable.

Feel free to ask, if you have any questions, I will be heppy to help a fellow victim of BAM.

Michael

PS: Excuse my english, I'm not a native english speaker

I wrote a long reply for you, which is under moderation, because I put a link in it. Expect it in 24-48 hours.

Hi fanta. i was in the same position as you. i have colitis, ibs-d, fructose malabsorption & bile acid malabsorption. i was still having terrible symptoms of stomach pain, urgent frequent diarrea, constantly sore rectum/anus, nausea, & extreme stomach/bowel noise, constant bloating - my colonoscopy biopsies came back within normal limits, even though my gastro consultant said it visibly looked like i had proctitis. he sent me for a sehcat scan which came back positive & i was put on questran sachets (cholestyramine). they changed my life within weeks! you mix the sachets with water (it looks like wallpaper paste) & tastes a bit like junior disprin! its fine. i take 2 in the morning & 2 at night. you have to make sure you take them an hour after any other meds or vitamins or 4hrs before - really important as other meds will get blocked in you system otherwise. this med dramatically reduced my symptoms by 90% within 2 - 3wks & i was able to return to work after months off sick. with all the conditions i have i still have the odd blip like random diarrea maybe once every other day, but its nothing like i was & no longer have that uncontrollable urgency that left me having to dump my trolley in supermarkets regularly running for a loo. i dont get any side effects with this med. i opted for the sachets rather than the pill option as the timing with other meds is bit better with the sachets - i think with the pills you have to wait 6hrs after before you can take anything else. the only thing that can get tricky is if you have a bad headache or cold you have to wait for the correct time to elapse after taking the bile meds before taking anything for a cold or headache, but a small price to pay occasionally to get your life back! i also take a liquid probiotic every day that helps to keep my ibs symptoms more stable & milder. hope this helps. xx

Thanks for your replies guys, I started colesevelsm about two weeks ago and it was going well but yesterday I've come down with terrible sickness and diahrea... Would this be from the tablets? You'd think that if it was going to give me those side effects it would happen within the first few days of taking them?

Doesn't help that I've got an ear infection as well. I'm thinking about stopping the colesevelam until these symptoms are gone SBD then starting up again to see if it's the tablets that's doing it.

I am hot and cold and the diahrea is killing me it kind of feels like I have a stomach bug.

First of all I would demand an apology from those insensitive, idiot doctors if I were you.  I might even be so mad that I'd find a new doctor and tell them to go to hell.  But....I have a syndrome caused by having my gallbladder removed 19 years ago and I also have had microscopic colitis for 19 years, which is too many white blood sells in the lining of the intestines.  They both cause diarrhea and the syndrome causes bile problems.  I take cholestyramine powder and it helps this problem with no side effects that I have found.  It is a safe medication, it is a binding agent that binds the bile together so it doesn't go haywire in your system.  I have heard that the drug you have been prescribed is not such a friendly medication so you may want to consider asking for cholestyramine powder instead.  If you give the colesevelam a try and it causes issues request this powder.  Good luck to you and let us know how the meds work!

i would echo what roo just said about trying the cholestyramine powders instead - they work for me (i have bam too) be sure to follow the time constraints with either the pills you have or the powders very important- you must take the powders either 4hrs before any other meds or vits or 1hr after. i think the time constraints are a bit longer with the pills - check the patient info leaflet that came with them. if you dont follow the time constraints it causes other meds to get blocked in your system & may result in other side effects. xx

The sachets weren't good for me I took three maximum. They weren't in my system long enough to do anything. It took me about an hour just to drink one and I threw up every mouthful. I even tried just gulping a whole one down. They really made me poorly.

The Dr seems to think at the moment I have some sort of stomach bug because I'm sweating and have a temperature. So I've got to come off them for a bit as they made me constipated and go back on them when I'm a little better. Nothing is staying down at the moment anyway.

Well I was thinking the other night if when I'm better and start to take them again and I get the same problems I will definitely ask to be put back on the sachets and I will just try and get through the sickness. It wasn't the taste that bothered me it just didn't want to stay in my system.

I hope you get over your bug soon. make sure u drink plenty of water to stay hydrated. you can get oral rehyrdration sachets from chemist to help. i wonder if you took too many sachets cholestyramine at once... i take 2 in morning hour after all my other meds & vits, & 2 before bed(4hrs after any other meds). its not a long acting med so better dosed twice daily i think personally. xx

Well I thought I'd update you guys..

The last sickness went after I stopped taking the colesevelam and then i started it back up again and guess what I'm down again with the same thing.

I feel nervous, hot, sick, stomach pain is horrendous, I've got sharp pains in my chest and feel breathless, my arms feel weak and everything seems to have worsened since starting them up again. It seems ok for the first week the side effects seem manageable but now I cannot cope.

I think its a phone call to the doctor on Monday to ask about them and to ask if I can have something else..? If there isn't anything I'll have to try the sachets again but I will have to take them at night to begin with because the vomiting from them was bad... Maybe I would get used to that though over time. I just really want something to work.

I am in so much pain right now I haven't eaten since the 16th and I've lost 6lbs even water seems hard to keep down.