IBS / bile acid malabsorption
Posted , 7 users are following.
So for seven years I have had constant diahrea, sickness and unbearable stomach cramps, dealing with all this has obviously made me depressed.
Most doctors and specialists told me I was making it up and you know what after being told that for about 5 years I started to think I was losing it.
They also tried to just fob me off with IBS as they had done all these tests and they kept coming back normal. but I kept pushing that there was something wrong with me.
Well recently I had a test to look for bile acid malabsorption... And guess what it showed up that I have it. And this is the reason for all my horrible symptoms.
They have prescribed me colesevelam and I was just wondering if anyone on here has been prescribed them.. Or if anyone else has bile acid malabsorption
I must say it feels fantastic to know that there is actually something wrong with me.
I hope this is the right place for this post I didn't know where else to post it.
I look forward to hearing from anyone.
Thanks x
0 likes, 15 replies
sarah87162 fanta550
Posted
Glad you have atleast found out something other than ibs.
Take care and keep in touch
Sarah
ellacraig fanta550
Posted
fanta550 ellacraig
Posted
You have to swallow a pill and then have a scan, then you must have another scan 1 week later.. You can't take any medication such as immodium a few days before or until after the second scan.
Hope this helps.
PrimaryBAM fanta550
Posted
After swallowing the pill on day 1, you are scanned next day to measure how much of the radiation is absorbed in thh bile acid in your body.
After a week you are scanned again, and the retention of bile acid is measured. By knowing how much radiation is left, they know how much bile acid you are recycling, and thereby if you re-absorb BA proberly after it has done its work.
If you have less then 15% left, you have BAM. less then 10%, you have a "level 2" BAM and less then 5% is severe BAM.
I retained 4-5%
PS: A am not a doctor, so this information may not be precisely accurate, but its close :o)
The_snail PrimaryBAM
Posted
In the US the Mayo Clinic is the only place that can officially diagnose pBAM / p BAD, as the SeHCAT scan is not allowed. The Mayo Clinic has a 48 hr stool test.
https://www.mayomedicallaboratories.com/test-catalog/Overview/63059
PrimaryBAM fanta550
Posted
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
PrimaryBAM fanta550
Posted
looloo43 fanta550
Posted
fanta550
Posted
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.
roo62 fanta550
Posted
fanta550 roo62
Posted
But yeah I tried those sachets and they made me ever so sick I couldn't keep them down.
I've just got to stay off the colesevelam until the stomach bug has calmed down and then I can try again. There's no point in taking them at the moment as nothing is staying in my system long enough.
looloo43 fanta550
Posted
fanta550
Posted
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.
looloo43 fanta550
Posted
fanta550
Posted
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.