HE SAID YES!!!: That's right. I popped the... - IBS Network

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HE SAID YES!!!

That's right. I popped the question and he said yes!

My Gastroenterologist that is. Said yes to prescribing me a Bile sequestrant (Questran light / Colestyramine)

It took a lot of nagging but I managed to get him to agree to the medication... just 1 sachet a day... with a follow up in ONE YEAR.

Anyway, has anyone else tried this medication?

What experiences have people had?

What side effects?

What dosage do people tend to take?

FYI I have IBS-D

Thanks all :)

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I have taken Questran or the light version for a year. It depends on what the pharmacy can get. It has changed my life. I take one sachet at 6pm before my main meal and have had no further incidents of diarrhoea. It is a miracle! I didn't have a SeCHAT test, just an enlightened gastroenterologist.

You may find it difficult to get at the moment, there is no stock around. I have got to try a different medicine this month, Colestid as my pharmacist can get it.

Good luck

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Hello whitesugar: hope you don’t mind me asking a few questions:

1. have you had to cope without questran & colestid during this phase of supply prob? And if you have, how much worse were your symptoms?

(Just asking cause my husband has been on daily questran for decades (due to crohns related BAM) and although so far i’ve managed to get him the light version by hunting around pharmacies)

2. Did you have to get your GP to contact gastroenterology in order to get the switch from questran to colestid okayed, or could your gp do the switch with the pharmacy?

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Hi. This month is the first time I have experienced the supply problem, but I was aware it was coming. BAD UK had sent out an email with an update on supply issues. I have posted the info somewhere on this site recently, but you can see it in the 'news' section on their website bad-uk.org.

I have a weeks supply left and put in my prescription request. I have a very good surgery and they have a Clinical Pharmacist who called me and had already found out about the issue. She is prescribing Colestid for me as that is also a sachet style medication and is also giving me a paper prescription that I can take around the chemists in case anyone has any Questran on their shelves. I haven't needed to contact a GP.

I dread not having the medication as I am sure that without it I would go back to the terrible symptoms. I went undiagnosed for over 40 years and have only taken Questran for one year.

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THANKS! Have a feeling i saw your previous post cause i’m already aware of BAD UK & its statements re this BAM meds supply prob. Am V GRATEFUL to you for your posts & discussions.

I’m 65 and a complex patient diagnosed with multiple early onset overlapping incurable immune dysfunction & connective tissue disorders (my 3 primaries are hEDS, SLE & PID...and i am living long term on Elemental Enteral Nutrition due to chronic intestinal pseudo obstruction (CIPO) caused by my 3 primaries) so am on a lot of heavy duty prescrip medication long term and have cultivated a wonderful group of helpful clinical pharmacists who bend over backwards to help me with supply probs. So when my early onset crohns husband’s questran supply dried up, my pharmacists wheeled into action. So far we recently got him enough questran for a few more months

Just to explain a bit more: after 40 years of severe crohns with peritonitis + several major bowel resection ops & daily prednisolone, his crohns went into ‘remission’ about 12 years ago...he managed to wean off prednisolone, but all that bowel surgery etc mean he still relies on questran. Loperamide + B12 + low residue diet. Like you, he is sure he will go back to terrible symptoms without BAM meds he can tolerate & respond positively to

Take care...please keep us posted if you can

❤️🍀❤️🍀 Coco

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Hey Whitesugar,

If you're concerned about supply, my function medication Dr has recommended I take Design for Health LV-GB Complex - She believes this does a similar job to Colestyamine. Just thought I'd mention it.

I haven't started taking it myself, so have no idea if it works, but it might be worth a risk for you - its £30 for a supply of 90 capsules, so not expensive.

Just thought I'd mention it, for me it's worth a risk for £30 :)

catalog.designsforhealth.co...

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I've heard about the shortage in dosage. Just out of interest, are you based in the US, UK or other Country? I'm based in the UK - not sure if we have a dosage shortage here or not.

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Hi, I am in the UK. See my reply to Barnclown. The supply issue is going to be a problem until a new company takes over the manufacture of the drug I believe. Good luck

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Hi I take Colestid orange 2 sachets 4 times a day been taking for 4 years now . I suffer with bloating on occasion . I used to take questran light but my pharmacist had a supply issue So my GP prescribed me this which is basically the same thing . I wouldn't be without it now . hope it helps you 😊

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That's a pretty high dosage but I'm glad it works for you. Did you GP put you on 2 sachets 4 times a day, straight away? How long until you noticed an improvement?

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Hi I see a bowel specialist i started on 1 sachet 4 times a day it worked for over a year but then had to up to 2 . I think it was within a week I see a big improvement good luck 😊

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CONGRATS briggsy 👍👍👍👍👏👏👏👏❤️🍀

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So pleased that you now have the chance to try this. Please lets us know how you get on. I find it interesting as I, like you, was tested for bile acid malabsorption but because I didn't "have it" I couldn't get prescribed a squestrant to try. I am assuming this is on the NHS and not private. I have a theory that most people with IBS may have bile malabsortion but just not enough to pass the test!

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It is on the NHS - The tricky thing now is going to get an increase dosage. As I said in my post, I get 1 appointment a year with my NHS gastro. It's only day 3 so need to give it time. I don't think 1 sachet per day will be enough though. I'll probably need to go private to get the dosage increased.

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Hi, just tried to reply to your comment but replied to myself by mistake somehow. I can't figure out how to rectify that perhaps you could scroll down till you find my comment. Sorry about that, I'm feeling shit today so can't concentrate very well.

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It's ok Maureen. Thanks for taking the time to write & look after yourself. If you couldn't get prescribed with a bile squestrant, than my Functional Medicine Dr has prescribed me a very similar supplement as well - Design for Health LV-GB Complex - I'll let you know how I get on with this, as this can be purchased online without prescription & is supposed to do a similar job.

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Oh that sounds very interesting. Be sure to let us know how you get on.

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and Maureen - I agree. I don't think IBS is actually a real condition. It's a "we don't know what to do" condition.

I believe most people with IBS actually either have SIBO, BAM or misdiagnosed IBD.

Doctors regularly seem to say things like "the tests are negative, you have IBS" but they never seem to focus on the fact that people who have IBS, aren't getting better from IBS treatment i.e. low fodmap, probiotics, stress management and so on.

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I agree with you that I don't think it will be enough for you. Once you are sure it's working to some extent for you, perhaps you could go back to your GP to up the dose. I don't see why he shouldn't or else get him to arrange another appointment with the gastro. After all if it's working, that proves the point, so surely they should up the dose to the required amount.

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YIPPEE!!!! So happy for you! It's rare that a doctor will prescribe these, and I've never understood why! I take Colestipol (3 tablets in the morning and 3 in the afternoon) every day and I have my life back! There's also Welchol and Questran (which is what you're taking, I think). If one packet doesn't work, ask him if you can take twice a day, or switch to a tablet form, which I like better. Good for you for advocating for yourself and nagging him..that's what it takes sometimes!

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Sounds amazing. I really hope it works for me. Did you start on that dosage straight away, or start with 1 & build up?

I'm not sure how long I need to wait before increasing the dosage - Fairly confident that's what I'm going to need.

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I started out on 3 a day...then upped it to 4 a day...that worked for awhile, them I asked my doctor if I could up it to 6 a day..he was fine with that...and that has worked for me ever since...been on that dose for over a year now...gads...what a relief!!!!!! Keep us posted!

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My GP practice has 1 good GP & several useless ones. My NHS Gastro is good but I get 1 appointment per year.

Think my next step is to try and get an appointment with my good GP, who will hopefully up the dosage :)

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Wow! One appt. a year?? That's way different than the US. I can go see my doctor anytime I want and can email or call him with requests...info...questions...etc.

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Yes but you pay for your doctors in the US, right? I can see my GP whenever I want (have to wait about 6 weeks for an appointment, but I can see them - They are terrible though, have no interest in helping anyone). As for Gastro - I get 5 minutes a year.

But yeah, I don't pay for any of this, well, I do, but via taxes.

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I have medicare and an advantage plan, so those pay for a physical once a year for free...but yes, if I go in to see him for anything else...I have to pay a co-pay, but it's only $20.00 for him and $60.00 for a specialist...hospitals are very expensive, though. Medicare and my advantage plan play fully, but I have to pay for the first so-many days (can't remember!).

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Great news, I have BAM and took questran light, but quickly switched to the tablets (much easier, but hard to get the GP to give you!). I really hope it works for you, literally gave me my life back. I was misdiagnosed with IBS for years! x

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Just out of interest, how was you diagnosed with BAM? Was it from a Sechat? mine was negative.

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Sorry just seem that yours was negative. Did they tell you the score 1-5 you could be borderline and if the sachets work that’s good xx

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That's interesting. I had no idea there was a score. All I got told was it's negative.

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When they explained it to me it was a score of 1-5, 5 being towards normal and they also gave me a percentage. Unless different consultants do it differently x

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Good on you Briggsy0304!!! I had my gastro appointment last week. Been waiting since March. I’ll cut my story short. Basically he told me I couldn’t have BAM because I haven’t had my gall bladder remove or any surgery on my intestines!! ‘You have ibs, try blah blah blah’ the usual fob you off stuff!! My husband was with me & saw I was getting upset so spoke up. Miraculously the gastro then said to try the medication for BAM, see how you get on & come back in September!! My point being, you have to be really pushy on these things and I think it helps to have someone with you to fight your corner at these appointments!! I’m hoping these meds will help me but I’m waiting for the gastro to send the letter to my gp as she wasn’t sure what to prescribe or the dosage!! This forum has been brilliant, I’d never heard of BAM before I joined here. Thanks for all the info & advice.

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Hi Squirrels, Yeah, it's really difficult getting the Gastro to agree to anything. They don't actually have their own ideas. You have to tell them. My first 5-6 years I relied on the Doctors & it was all "we can't do anything" - I was in my early 20s at that stage so knew nothing about Doctors.

For the past 6 years I've just been doing everything myself now & only going to the GP when I need a prescription. I'm friendly but direct & eventually they have the attitude of "Fine, I'll give you the medication if you leave me alone"

Out of interest, is your appointments on the NHS? Getting an appointment in March, July & September is a remarkable quick turn around if so.

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Yes all NHS. Maybe in depends on the area you live in. I’m in the south east.

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Hi, glad they are giving you the medication to try. Don’t let them say you can’t have BAM, I have it and have had no surgery and a gallbladder (at the time it’s been removed since-had BAM before that tho). Try and push them to test for it if only for you to have a diagnosis. Good luck!

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Yes I think I’ll speak to my GP. I’ll see if the meds work first just in case my results are negative & decide I don’t need the meds!! 😩

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I'm not sure if I technically have BAM, however I most certainly have a malabsorption of fat. I mean, it's obviously the case when I use the loo so often. The same probably applies to carbs & protein.

I've been taking 1 sachet a day for a week now & the results are amazing. I'm going to the toilet so much less now.

I've cut down from 4 Imodium per day to 3 a day as well and still going less. The task is to try & get off the Imodium & see how I am, might be the case I need to increase the colestramine dosage a bit, but it's doing a much better job then the Imodium has ever done!

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Good I’m glad you are starting to see a light at the end of the tunnel!!

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So it's day 4 on the medication, 1 sachet a day

Pros

I think my bowel movements have improved, although it might just be placebo

I can tolerate the medication without any problems (Hurrah!)

Cons

I don't think it's doing anything.

How long was it before anyone noticed any improvement?

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