Colestyramine

[Yoga82]

I have recently had a colonoscopy which resulted in all biopsies being clear. So have had a diagnosis of ibs d and possible Bile Acid Malabsorption. My consultant started me on 1x 4g sachet once a day for a week and increased to two sachets a day for a week.But I’m still having very loose, frequent stools. I haven’t had liquid diarrhoea since being on the sachets. He has recommended I increase to 3 sachets a day. I really want to be positive that it may work but a little disappointed so far. Do you think I need to give it more time for it to take affect?

[Bellacat21]

Hi

I have been on these sachets x 1 a day for about five years since having my gallbladder removed.

I have tried to go to 1x sachet every other day and just can’t do it as I get pretty much instant stomach cramps after eating even the most bland of foods.

For me the sachets are a God send I eat healthy as much as I can but still can have the cake, chocolate etc should I choose to.

My GP gives me a yearly check and is happy to keep repeating the prescription.

For me they are great so maybe if you can give it a little while longer …

My poops (sorry) aren’t always perfect and I can have looser days but I think that would be permanent if I chose not to take the sachets.

They work well for me but I guess everyone is different. Mine is linked to missing GB and this resulting in BAM.

Thanks Victoria

[Yoga82 in reply to Bellacat21]

Thank you so much for taking the time to reply. So glad they work for you and hoping they do for me in time. I’m happy to keep trying them as I really want them to work as the diarrhoea is so debilitating.

[Pollyboo in reply to Bellacat21]

Hi, I hope you don't mind me asking but, I too have had my gallbladder removed 10 yrs ago, and have taken Cholestyramine 1 sachet a day since.I have had IBS for 20 yrs, I think since the menopause.

Was just wondering what time of day you take you Cholestyramine.

Thanks for reading

Pollyboo

[Bellacat21 in reply to Pollyboo]

hi

I take it in the morning, in my kind it’s settling my stomach then for the day ahead. Someone once said to mix it well. So I have a strict routine of tip into a glass of water and leave for one minute to like float I guess, then I stir for two minutes then drink all in one go.

Twice I’ve tried to reduce to every other day and within a day the pains come quite quickly after eating food that I eat so readily whilst taking the sachet.

Persevere if you can but do what feels right for you.

Good luck with it all 😊

[Pollyboo in reply to Bellacat21]

Hi, thank you. I have been taking mine at night because I was worried about taking imodium if I needed to as I am always worse in the morning.May consider mornings as I can see what you mean by settling stomach for the day.

It seems to be trial and error for us all.

Take care Pollyboo

[Whitesugar]

It is good news that your diarrhoea has changed on the colestyramine. I have read that some patients need to take a sachet before every meal. It’s not easy, but keep going. I was lucky that I only need one per day which I take at night and that freedom from unexpected diarrhoea is life changing. Good luck

[Yoga82 in reply to Whitesugar]

Thank you so much. Did it take a long time for the sachets to work for you? Maybe I need to split the sachets up more as tend to take a double dose before evening meal.

[Whitesugar]

It did work quite quickly, I think I remember realising things were better after one week. I have been on colestyramine for 5 years now. I suffered for over 40 years with the incorrect diagnosis of IBS.

[Yoga82 in reply to Whitesugar]

I’m sorry you suffered for so long. I was diagnosed with ibs 7 years ago and have only been diagnosed with the possibility of BAM in the last few weeks.

[Gladragsg]

hi I use 1 sachet per evening and it has made a massive difference to my life. I was diagnosed with IBS many years ago but I am sure I have bile acid malabsorption which the colestyramine appears to have resolved.

[Yoga82 in reply to Gladragsg]

That’s brilliant news, glad it’s worked for you 😊

[Kayrod]

I'm the same as you. I take Cholestryamine 3 X a day. It certainly helps but I have to follow a LOW FODMAP diet to feel better. I had to discontinue all caffeinated drinks especially coffee. No artificial sweeteners except stevia or monk fruit. Lots of other changes. Google low fodmap. Best wishes to you!

[Yoga82 in reply to Kayrod]

I have tried a low FODMAP in the past with no difference but I wasn’t on the colestyramine then. So that’s worth a go, I cut out coffee a long time ago and only have the odd cup of tea and mainly herbal teas.

Thank you for taking the time to reply

[Sarah090174]

Hiya, I am currently taking colestyramie twice a day morning and night. It took a while for me to see a difference but I still have some urgency and unpredictability with my bowel habits. My stools are now more formed but still have to be very careful about what I eat. I try to stick with the low FODMAP diet and I hope that possibly I will be able to eat what I like one day. I have a provisional diagnosis of bile acid malabsorption but am yet to have the sehCAT test for it. It will be interesting to see what happens when I stop the medication for the test when I eventually get a date. I think you just have to persevere with the medication. I was originally diagnosed as post infective IBS but the medication didn’t work. I have had a colonoscopy in April which is always normal but biopsies and my stool samples always show high levels of inflammation. This has yet to be addressed or treated by my gastroenterologist. Good luck with the medication hopefully you will see an improvement, just be patient.

[Yoga82 in reply to Sarah090174]

That’s reassuring to know. Yes I’m going to keep going as it does seem to have made a slight improvement. My consultant has requested a stool sample as the next step also. Hope things work out for you too.

[Sarah090174 in reply to Yoga82]

Thank you so much, I do hope things do improve for you but it does take time. I started the medication at the end of April and am only starting to see the benefits of it. But I am obviously still careful with foods. I certainly know if I have had food which doesn’t agree with NEC within a short space of time. Good luck with it all and maybe your stool sample may throw something else into the mix.,

[Eastbourne11]

Hi Yoga82 I took Colostramin for two years because a constant diarrhea, one a day because I have no gall bladder. It does strip various vitamins from your body and even though I was taking multivitamins I still got anemia. I have Mal Absorption of Bile and now take two loperamide during the day. This keeps me safe. I did not like Colostramin anyway and I am told by a doctor who I trust that we can take up to 6 a day with no bad results. If you do not mind taking Colostramin, then take as many packets as you need to stay normal, otherwise ditch it and try Loperamide. Your doctor can prescribe it. Good luck .look on line to see what vitamins Colostramin takes from you body.

[sugarplumferry]

This is such a beastly condition. I’ve got BAM after having my gall bladder out a few years ago. It’s really trial and error with this stuff. If your seeing some improvement I’d try the three sachets a day and don’t be afraid to experiment with the timings. A lot of people find taking a dose last thing at night is helpful. If you’re on FB check out the BAD UK group. I didn’t get on with cholestyramine so control my symptoms with loperamide, on prescription and one psyllium husk capsule before my evening meal. Loperamide is really safe and doesn’t have unwanted side effects. Best wishes.

[Yoga82 in reply to sugarplumferry]

Thank you so much for all the fab info, I didn’t know there was a FB page!

I have used loperamide in the past but worry that if I keep using it, will it stop being effective for those ‘real emergencies’?

[sugarplumferry]

I queried this with my GP as I was concerned about the same thing. She said it doesn’t work like that and will always be affective. The one thing I have found is the Tilomed brand of loperamide doesn’t work for me. I’ve tried it in tablet and capsule form with the same result, or lack of!

[Yoga82 in reply to sugarplumferry]

Oh really! This is so reassuring to know-thank you. That’s interesting to know that the brand can make a difference to its effectiveness. It’s all a lot of trial and error isn’t it!?!