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hi just back from visit to hospital. my doctor has prescribed , Cholestyramine tablet to reduce gall bladder bile as Isotope Sehcat Scan

scan showed i was producing to much Gall Bladder Bile .anyone had any problems with this medication , i have IBS-D for past 20 years. Trisha from Ireland

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Hi Trisha,

So glad to read that you've been prescribed cholestyramine and I hope you will be too. I put up a major post on this site only a couple of weeks ago about bile acid disorder/malabsorption and how often people are misdiagnosed as having IBS-D when BAD is actually the culprit.

I take colestyramine as a powder which I make up into a drink 20 minutes before eating. It took me a couple of weeks to get the dosage just right so I didn't make myself constipated or get wind/bloating. Once I got to grips with it, however, all my problems vanished and I kissed goodbye to the FODMAPs diet - hopefully forever.

Let me know you fare with this.

Roz

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hi Roz B. i had read your post a couple of days ago and found it very interesting, i am just relieved that they may have found the cause after 20 years . i will let you know how i get on with new treatment . fingers crossed i get some improvement . Trisha

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well been to chemist to get prescription filled only to be told Cholestyramine has been recalled and won't be available for 6 months . it was to good to be true that after 20yrs i might of got some relief ..

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Never! Were you prescribed tablets or the powder sachets?

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Hi again Trisha,

Just been looking for info on this recall. It actually happened in July and only affected one producer which is Questran although their 'light' version wasn't affected and is still available. Apparently there was some concern over possible contamination. My colestyramine is manufactured by a company called TEVA UK Ltd and is okay.

Suggest you give your doctor a ring and get him to sort this out.

Roz

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hi thanks Roz . just been told i can get another brand but will have to pay 80 euro a month for it , as not covered by med card. i cant afford that as on welfare due to being unable to work because of ibs . i am going to see if i can borrow the money to do me for 6 months till others are back on shelf. trisha

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Best of luck, hope you get sorted out soon.

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Does anyone have any uptodate news on the availability of colestyramine - it hs been so helpful to me. Boots tell me they have not got any and I have rung round a number of other chemists without success.I am in Poland for a week but can't get it here either. Like you Trish I would be prepared to pay for it. Dr. Read has suggested two alternatives but so far I have not been able to track them down.

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hi Brandywell. there are a few different brands of cholestyramine . so ask your chemist to order them in for you . i have had the german brand HEXAL .Spanish brand by RUBIO. And one by TEVA. all worked the same . i had to get a hardship form from chemist as could not afford to pay the 120 euro they cost. i got the spanish ones for 25 euro when my sister went to lanzarote. . if you know anyone going on holiday they might get them for you just ask your doc to give you an prescription hope this helps . Trisha [ Ireland ].

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Thanks Trish - I will pursue this. We tried in Poland without success and will try in France next week.

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started on colestyramine on Friday i take quarter sachet in morning an hour after my other meds and then the same early evening. ive noticed a slight difference Saturday morning and improved a bit more this morning so hopefully i'll get more results as the days go on .

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So glad to know you managed to get the colestyramine and that you've noticed an improvement.

Sounds as if you're taking this differently to me though. Dr Read on the IBS Network told me to take it 20 minutes before eating and measure the dosage according to the size of the meal I was about to eat. I started off taking a quarter sachet before lunch and half a sachet before my evening meal. These days I don't always need to take the lunchtime dose and, as my meals are never very large, I sometimes just take a quarter sachet before dinner and that's it. Remember, it only works on the food you're about to eat.

You do have to fiddle around with it a bit to get it right. Don't be afraid to increase the dose as the worst thing that can happen is it'll make you a bit constipated. Colestyramine doesn't invade your whole system, it just expands and sits in your intestines where it mops up excess bile acid.

Roz

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hi Roz. i have to take around my existing tabs as colestyramine inhibits the affect of them.. so its either take 1hr after tabs or take tabs 4hrs after sachet and as i take tabs 3 times aday , morning and evening work best for me. iv'e had a good weekend as in a 50% . but today abt 20% but still an improvement, i'm going to have a look at trying the fodmaps as for the past 20 yrs haven't been able to eat any fruit / veg or cereals so in the next few weeks will start to add and see what happens . thank you Roz you have been very helpful . trisha

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Yes I agree, really tricky trying to work it around other meds.

FODMAPs worked extremely well for, me pre-colestyramine, and I was eventually (and gradually) able to reintroduce about 50+% of the banned foods. I found the Monash Uni app (download from website) a tremendous help along with Patsy Catsos's book, 'IBS - Free At Last'. Most of the other websites out there about the diet are out-of-date and often just plain wrong, so take care where you're getting your info from.

Whatever you do, I really hope you get it right and things go well for you.

Roz

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hi iv'e been taking colestyramine for a week now there has been a 50% improvement so far expecting to get better results as time goes on its the best i've been in 20 yrs. there not covered by med card in Ireland costing 80 euro a month, but my sister brought my prescription to lanzarote and got them for 26 euro for the month .big saving

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So very glad this is working for you. Perhaps you could try increasing the dose to improve your results further, some people have to take up to 4 sachets per day - though I appreciate you're having to pay for it and the higher the dose the more expensive it gets. You must feel very relieved after all those years of IBS.

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well the past three days have been very bad constant diaria still taken colestyramine . i have the flu at the moment so i'm hoping it might be a side effect of that .

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Hi trishb and roz,

Recently just been prescribed colestryamine (after a long fight with my doctors for it) and was wondering if you found anywere that supplys it? i found 1 chemist in the mill shopping center in clondalkin that have it but its 170 euro monthly :(,i will be trying to get friends/family to get it for me when there going abroad as its alot cheaper).

can i ask did it work for you? how have you been since you have started it.have you any tips on the do's and dont's of taking it.

over the last 3 and a half years ive had every test to try and figure out why ive been so sick(all of them have came back clear and could of easily been another 3-4 years if not for google :))....its now looking like i might of been exposed to some sort of a toxic mould and from my research colestyramine is the only known way of trying to treat it!

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hi marko09. i get mine from the chemist on claddagh green ballyfermot. as i couldnt afford to pay for it they gave me an hardship form to bring to doctor to fill in then its sent to cherry orchard hosp. and when accepted i got for free , it took a couple of weeks to get sorted . imy sister got me some in lanzorote they cost 26 euro there . i take an sachet an hour after my morning tabs and then i take 1 hour after my evening tabs , i have a 50% improvement which has made an major difference to my life. hope this helps / trisha

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Hey trishy thanks for the reply,im definitely going to ask for the hardship form because 140 euro monthly(from a chemist in avonbeg) is to much to maintain.

Do you know if i should come of the stomach tabs(prazole) im on at the moment?i was put on them to help me get by, but they really only help cover up my the problem.

its abit shocking that we all have to come on here to try figure out ways to treat ourselves,im wondering if the price of the medication and the fact its not covered on the medi card is part of the reason doctors wont pursue the direction of treatment.

Any hows...thanks for the help and i will try update my results over the coming weeks so that i might help countless others that are in similar positions.Mark.

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I have just been advised that I may have this problem so am going to ask to be referred to get the test done. Can you tell me how big the tablet/capsule is that you have to swallow for it only I struggle to swallow really big tablets or capsules?

Glad to hear that you have finally got a diagnosis but it must be very frustrating to be struggling to get the medication you need. I am struggling to get help from a dietitian who apparently only deal with obesity these days, or at least that is the situation in Scotland anyway.

Hope you manage to source the meds you're looking for. I'll keep my eyes open if I see anything about it on the web.

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I have just been looking on the internet and have found a company who manufacture Questran in the UK. They are Bristol-Myers Squibb House, Uxbridge Business Park, Sanderson Road, Uxbridge, Middlesex, UB8 1DH. If you copy the web address below it should take you to their website. It gives information and contact details for them. Hope it helps.

medicines.org.uk/emc/medici...

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Hi, I'm so glad you found out about BAM, took me years. For me, Cholestyramine other binders didn't work so I thought I'd share what worked for me, in case cholestyramine doesn't work for others. Strangely it involves taking a different bile salt (ursodeoxycholic acid) which through some method reduces the presence of other bile salts.

Very soon after my surgery, I found that I would have extremely loose bowel movements after the first meal of the day. Sometimes this would happen after the first cup of tea or coffee or whatever. I did notice that the volumes I consumed would affect the urgency. i.e. more volume consumed meant more urgency immediately thereafter. This condition lasted for years. I was able to mitigate the condition somewhat by modifying my diet somewhat, such as eating a lot of non-soluble plant matter, eating very small breakfasts, low oils and fats, though at best these ended up working as half measures for me. I also tried a number of binders, enzymes etc.

Unfortunately for me colestyramine didn't work.

Eventually what I've found works perfectly for me, though dosing might need to be adjusted. Basically I start by taking 250mg ursodeoxycholic acid and 2 mg loperamide three times a day. It usually takes three or four days for the morning urgency to subside. Eventually it does. Once I get into a routine where the urgency is gone, and I have a movement only once a day or even once every two days, I cease taking the medication. Eventually, some time later I will have a loose but not too urgent bowel movement, at which point I immediately take 500mg of ursodeoxycholic acid and 4mg of loperamide. This generally returns me to a regular schedule. If it doesn't and the urgency continues, I start again by taking 250mgx2mg three times a day etc.

I've been doing this for over a year now and it's made things much much easier.

Generally, the lower fat/oil and more fresh fiber in my diet the longer the periods of stability last. Hope this helps you and others.

I just want to spread this solution that I sort of stumbled onto which might work for people.

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