Questran (Cholestyramine)

[Grant]

After my recent surgery the Diarrhea had been the usual torrential sort of thing, then about a week ago it slowed & for about 4 days things were as near normal as can be. I felt great. Then Tuesday night the dam burst especially @ night. Absolutely terrible diarrhea @ night & I've been absolutely shattered because of the lack of sleep. Anyhow been to the hospital today to see The Gastro specialist & he's upped my Loperamide intake to 9 capsules a day & put me on Questran for Bile Absorption. I've tried this before previous to this surgery with no joy but my BM's appear "fizzy" & sting like crazy. I'm hoping this is the answer.
I've also had a degree of discomfort which @ night was also present on my right lower back & just to the right lower of my belly button. He seems to think that if it is bile then the diarrhea racing through the recent surgery area could well be causing it to become sore.
Also my bloods are now sufficient for me to restart Humira which i've done today.
Be interested to hear from anyone else whose used Questrian.
Rgds
Grant

 

[shamrock15]

Loperamide, questran, some fancy injected med, nothing really worked for mine. It had to sort itself out all by itself. Mine took several months to settle down. Things that may have helped a little - food like banana bread, cheese if you can tolerate it - may have thickened things a little. Your bowels may just need a lot of time to settle down and start properly absorbing again.

 

[Grant]

Shamrock 15, thats an interesting viewpoint. Although calling Humira a fancy injected drug is a little strong IMHO.
This is my 4th surgery so I'm far from a novice & know what to expect but the diarrhea @ night has been the worse this far. I'll let you know how I get on with it.
Best Wishes
Grant

 

[deb123]

HI Grant,
I have been taking Questran since my surgery 7 years ago to remove terminal ileum. When i left hospital i suffered really bad diarrhea than stung like hell and was like acid. My Gastro Dr perscribed Questran which i mix 1 sachet in 1 pint of blackcurrant juice. I had to take more at the beginning, but i am down to 1 sachet now. You really have to watch your fat intake as this makes it harder for the Questran to work, and you get the acid diarrhea from hell!!

Hope you feel better soon.

Deb

 

[beefcake]

I'm on one satchet a day,been on it just over 3 years,
If I don't take it,then the world falls through my bottom !

 

[shamrock15]

Sorry, wasn't referring to humira. When I had my ostomy, I had huge problems with water absorption. They tried loperamide and some of the others, then an injectable medication that was supposed to increase absorption and by extension reduce fluid/liquid bowel movements. Didn't work at all for me, and unfortunately I do not know its name. I have nothing at all against humira, and am actually taking remicade that is working quite well. My personal experience with anti-diarrhea meds and bulkers is that, for me, they have not been effective at all. I know about the surgeries too - I have had 6 to date - four for resections and strictureplasties and two for ostomy and reversal. Despite all the issues, I am now passing almost normal stools. They are ribbon shaped due to another stricture, but the diarrhea is almost non-existent. In the time that has come to pass, there isn't a single change in meds to account for it. Seems to be mostly changes in sleep and an increase in confidence the future.

 

[Homebound]

Hi, I've been on Questran for years now. I was put on it after having my gallbladder out. For the same reason basically, to help soak up the bile. It really did give me my life back in that regards. I have to make sure and take it daily or I'm in trouble.

Now it does nothing for me if I'm in a flare however. That's actually how I know I am flaring. The D will be there no matter what. But it has been a life saver for when I'm in remission and dealing with D from no gallbladder.

 

[Grant]

Tks for all the replies. My specialist wants me to take 4 sachets in a months time all around 10pm, thats a helluva lot of water to take in about 1.5 hrs before bedtime!! The whole idea being to try & get me a decent nights sleep(which I had last night).
Shamrock 15, so pleased to hear you are as near normal as can be albeit with a stricture. For me Loperamide Syrup in particular has in the past given me my life back. But as you have confirmed we are all different & what works for some doesn't for others.
Keep well everyone
Grant

 

[SarahAnne]

I've had my gallbladder and TI removed for years now and I've always had D. After my second resection last year the D became unbearable, like deb123 said, it was like acid! My GI put me on Cholestyramine and it's been fantastic. I take a small packet in water daily, and it works well. I still go 3-5 times a day, but it's softly formed.

If I skip even one day of the stuff, I get violent again. And like Homebound said, if it's flare related D, it won't touch it.

It hasn't worked miracles, but I have been able to leave my house without having to worry about where a bathroom is every 15 minutes.

 

[Grant]

So what time do you all take your Questran?? My instructions are quite specific, I have to take them @ night. But I'd rather take them throughout the day otherwise I'm back & forth peeing like a racehorse all night :eek2:.
Kind of defeats the object for me.
Grant

 

[deb123]

If you find that you are runnnig back and forth to the loo at night you can always make up your Questran drink in the morning and put it in a water bottle, and drink it slowly during the day. I always give it a good shake up as it tends to settle and go a bit gritty otherwise.

 

[CLynn]

Grant, I take it in pill form, and it usually works wonders for me. I take the pill in the morning, the G.I. never actually specified what time of day to take it. But I will tell you, in the last few weeks, it hasn't worked as well, which had me puzzled. My blood work 2 weeks ago did as well, my RBC and hemoglobin have been steadily dropping since September, with the RBC now listed as low. So I asked my GI about it, and also mentioned that I was having more D than I was before. He decided to put me on iron for the RBC, but also added a script for folic acid. Upon looking this up online, I discovered it is basically B9. Crohn's patients tend to be deficient in this as well, not good as it helps us produce RBC and being deficient will bring on more D. I used to take a B complex vitamin, but had stopped. Sure he is on the right track, we shall see. Possibly this is going on with you as well?

 

[Grant]

deb123, the thing is he wants me on 4 sachets by the time I go & see him again in 3 weeks time & as far as I can see its all got to be about 10pm. No meds to be taken an hour before & 6 hours afterwards. Think I'll ring him or get a message to him about timing of these sachets.
CLynn, I'm having a blood test a few days before i see him again. I'm going to jot this down & ask him about this, although when in hospital my RBC for the device on my finger for measuring oxygen although sometimes low had recovered by the time I left. Also I had a blood test done two weeks ago & all my bloods had recovered with the exception of me being a bit anemic which he said was normal for a few weeks post surgery. And even that had improved since I was in.
Your post has given me lots of food for thought so thanks very much for the reply.
Regards
Grant

 

[CLynn]

Most welcome, Grant! I wish the world had been online when I was diagnosed, would have been nice to have this forum back in the day. The G.I.'s just are not always the best about thinking about and informing us of the fact that we will NEVER really absorb things properly, and will need extra supplements on vitamins and minerals, to stave off other things. Enjoy your weekend!

 

[deb123]

Hi Grant, thats sounds crazy if he thinks you can take 4 sachets at 10pm, my god you wont get a wink of sleep!!

4 sachets is alot - does he really think you need to be on that much a day? I dont think i would have a BM in 3 weeks if i took that much a day!!

I started on 2 a day, and reduced down to 1 over a few months. If you have something fatty to eat though the Questran isnt so effective, and i take a little more if ive had something naughty!

If he seriously thinks you can take that much in a day i would make it up in a big coke bottle and fill it right up with squash or whatever you like, cos you dont want to become really constipated. Thats like going from one extreme to another.

Good luck with it, let me know how you get on.

Best wishes,

Deb

 

[ZIGGY]

Hi Grant

I have been on this drug for over 9 years now since my resection. By the way no one ever at one time before operation said to me that I woud probably have to take this drug for the rest of my life.. or that it it would be so gross to take!

Any how two years ago my Gastroenterologist made the decision to put me on he tablet version (about three times more expensive here in UK) BUT HORAH! a simple yet huge pill version with no water...

It is called CHOLESTAGEL 625 mg tablets. If I don't take these then I am in the bathroom ...

Regards
ZIGGY

 

[Sailorluna]

Grant I also take the pill version now. They are called Welchol and I take 4 giant pills a day. They have same rules. 2 hours after other meds or 6 hours before.

Timing sucks. I take one kind of meds as soon as I wake up and The Welchol 2 hours later. Then all the other meds before bed. Can you adjust the timing of the other meds?

 

[Grant]

Sorry for the late reply Sailorluna, I've been on the phone to the hospital & basically been told that the take @ night thing is ok if your only taking one or two. So I should be up to three by now but tbh I did it for 2 days & felt so bloated I went back to two.
Now I have another couple of questions for all those using or have used Questran. Since I've been on two sachets I'm getting floating stools & looking on the net there seems to be a correlation with this.
2nd question, I'm still feeling bloated on two sachets & its actually affecting my appetite. By now 6 weeks after surgery my weight is usually back to around 11 1/2 stone. I'm stuck on 11 stone, more or less what I was after surgery.
Regards
Grant

 

[deb123]

Hi Grant,

Floating stools can be because of too much fat in you diet. I know if i have eaten something like fried chicken, i get floating stools and or diarrhea.

My GI doctor never set any hard or fast rules regarding the Questran, he said that everyone is different. He advised me to take 1 then if that wasnt enough to take 1 and a bit more and so on, until i found a comfortable level.

I hope you get some good results soon,

Best wishes,

Deb

 

[Grant]

Tks deb123, I seem settled on two sachets a day, one in the morning, one in the evening.
Rgds
Grant

 

[beefcake]

Don't worry about your weight loss, I
Lost a lot more then you did while I was hospitalised !
It does go back on, slowly but surely, there is light at the end of the tunnel !