Anyone taking Cholestyramine Powder for Diarrhea?

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Luv2Run
New Member


Date Joined Apr 2011
Total Posts : 9
   Posted 4/13/2011 8:36 PM (GMT -6)   
I had a colonoscopy in Feb. 2011, the findings were "aphthae in the terminal ileum" the doctors said it was ulcers.  There were 3 biopsy's taken during that, all came back normal.  I then had bloodwork and a small bowel series done, the one where you drink barium and have xrays taken every 20 minutes, both of those came back normal.  I went to my doctor today and he said that besides the ulcers in my colon everything was normal so he didnt want to treat me for crohns yet.  I am going to the hospital tomorrow for more bloodwork and also a BM culture.  My doctor gave me a perscription for Cholestyramine Powder you mix with water or orange juice for the diarrhea since it is still controlling my life.  I was just wondering if anyone else has taken this powder to treat diarrhea and if it worked. 

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 5957
   Posted 4/13/2011 11:36 PM (GMT -6)   
my moms taken it for years and it works well for her.

blacky
Regular Member


Date Joined Mar 2003
Total Posts : 369
   Posted 4/14/2011 7:46 AM (GMT -6)   
I have been taking it everyday since 1999. It works wonders for me. If I don't drink it by noon, I start to get gurgles, and then it dons on me that I did not take it. I run to the can the rest of the day with bile salts diarrhea. I get very exhausted from that so I don't miss!!!
Blacky

Mom of 3 girls, 4 bowels resections, currently anemic, having iron infusions weekly
Questran, Humira bi-weekly

atctackett
Regular Member


Date Joined Oct 2008
Total Posts : 114
   Posted 4/14/2011 9:21 AM (GMT -6)   
I have been taking it since about middle of 2009. Like the previous poster, I can tell when I have forgotten to take it. I take to help with diarrhea and the amount of bile salt. I had 2 resections in 2008 that took the terminal ileum and a bunch of bowel with it. I developed a mild-moderate short bowel syndrome. Cholestyramine has really been a benefit for me.




Currently taking Pentasa 1000 mg 4X/Day, 6MP 100 mg/day, multivitamin, Lopressor 50 mg 2X/day, Cardizem 60 mg 2X/day, Remicade IV every 8 weeks, Omeprazole CR 40 mg/day, Lomotil Once a Day, Cholestyramine 2 grams daily, Hydrocodone PRN

pdmhol
Regular Member


Date Joined Apr 2007
Total Posts : 36
   Posted Today 10:50 AM (GMT -6)   
I take it every day. If you don't like the powder ask your doctor for the pill type. It doen't stop the diarrehea for me but it is not as bad. I also take imodium every day.
Crohns dx in 2002. ilieum and colon resection 2002. Ilieum resection 2007.
Started Humira dec, 08
colestid 4 pills 2 x  a day

A-Jaye
New Member


Date Joined Apr 2011
Total Posts : 1
   Posted Today 5:11 PM (GMT -6)   
I take it every day and have since 1997. I mix it with apple juice. It was kind of inconvenient at first, but now it's just part of my morning routine. It's actully a godsend since it is the main thing that keeps me feeling normal and allows me to lead a full life! Good luck to you.

Luv2Run
New Member


Date Joined Apr 2011
Total Posts : 9
   Posted 4/19/2011 10:43 AM (GMT -6)   
Thanks everyone for your feedback!  I have been taking the Cholestyramine powder for a week now and it seems to be working!  YAY, only one problem today I had a BM and there was lots of blood that came out with it...  Please tell me this is normal-ish when taking Cholestyramine it has never happened to me before this.

Djin
Regular Member


Date Joined Jan 2010
Total Posts : 260
   Posted 4/19/2011 2:22 PM (GMT -6)   
Well... is not supposed to be so. Colesteramine helps in absorbing water and bile juices, almost a mechanic operation. It's not supposed do cause any bleeding.
 
My doc tell me to keep it, even in the middle of a flare.
 

gobnaitt
Regular Member


Date Joined Dec 2006
Total Posts : 65
   Posted 4/19/2011 8:04 PM (GMT -6)   
I've never had any blood because of Cholestyramine.

I take 1 pkg of the Light powder every morning. An hour after my morning meds. The Light tastes better than the regular.
Just like the others, if I forget on a day off or something, I notice by noon or so. I just take it then. Or immodium if it's too late.

I've been taking it for about 11 years. It seems to be the one thing that helps me the most...or so my gastro says.

Miss_82
Regular Member


Date Joined Jul 2006
Total Posts : 72
   Posted 4/19/2011 8:51 PM (GMT -6)   
I tried for a few days and felt like it was making me more sick so stopped it and got the pills instead.
28 years old
CD for 22 years

Bowel resection in Dec. 2006

Pentasa 4000mg
Iron 2x day

nawlinscate
Veteran Member


Date Joined Jan 2007
Total Posts : 655
   Posted 4/19/2011 9:50 PM (GMT -6)   
I tried taking it several years ago, a full packet a day--and it gave me unpleasant side effects (bloating, constipation, gas), so I stopped. Three months ago I tried it again, but using only about a third of a packet each morning (an hour after taking my morning meds). For the first two months, it worked absolutely perfectly: no more running to the bathroom endlessly every day (after a bunch of trips to the bathroom each morning). It was a godsend. However, over the past few weeks, I've turned into an industrial-strength gas facility every afternoon and evening. It's so uncomfortable and embarrassing that I've tried to stop taking cholestyramine. But if I do, the diarrhea immediately returns. So I'm confused right now as to what I'm going to do.

The power is reasonably pleasant-tasting. I mix it with a few ounces of apple juice or apple cider. I'm hoping that my doctor can give me some advice about the afternoon gas attacks. Sigh.

andrealeigh71
Regular Member


Date Joined Sep 2009
Total Posts : 88
   Posted 4/25/2011 11:23 AM (GMT -6)   
Has anyone taken both the tablet and powder at different times? Is one better over the other in terms of outcomes?

Hershey8888
New Member


Date Joined Apr 2011
Total Posts : 3
   Posted 4/25/2011 7:09 PM (GMT -6)   
I have been on Questran (cholestryamine powder) since 1979. I have taken it with every meal, every day since then. It immediately stopped my diarrhea and I am still here because of it. I cannot be without it as my terminal ileum (what's left of it) doesn't absorb bile and that causes the diarrhea. I even took it through my whole pregnancy. It is not absorbed systemically so it has no side effects on the body but it does affect the digestive system. I know I can't live without it. It is now just a part of my life. I have always taken the regular flavor and that is what I am used to. That is 33 years now and counting!
I have had Two surgeries and three resections. Questran only controls the diarrhea and does not treat the inflammation or disease in any way.
I have just started Entocort for the first time and am experiencing some hot flashes and heart racing but not as bad as the prednisone.
Is this normal? Thank you

poopycat1
New Member


Date Joined Jun 2011
Total Posts : 2
   Posted 6/22/2011 8:15 PM (GMT -6)   
I registered on this forum just to let everyone know that, for me personally, Questran/cholestryamine has totally changed my life for the better!

I used to get chronic diarrhea, and it was getting worse and worse. When I was at work, I used to go to a restroom on the other side of the facility so people wouldn't know it was me in the bathroom. If I went out for lunch, I had to choose places that were near restrooms and I knew where there were public restrooms because I would have to go sometimes before I even finished my lunch. I wouldn't eat breakfast because I knew that I would never be able to make the entire commute without diarrhea, and there were no bathroom stops on my way to work. I panicked whenever I knew I had to go to dinner in an unfamiliar place, and lived on Immodium - to the point where it just didn't work anymore.

Things got worse and worse; I would get diarrhea even if I didn't eat anything and would have several incidents after eating. I used to just get it once, and would be done, but then I would get two or three more diarrhea incidents shortly after. I was miserable and embarrassed.

I had my gall bladder taken out in 2010, and of course that didn't help things. The surgeon said that I would get better if I just took Metamucil, but that didn't help at all. I told him I was still experiencing problems, and he prescribed cholestryamine. That's when life became worth living again. Almost immediately, things were better. I only got diarrhea if I overate or had something that would have caused me trouble anyway, such as coffee. Now, with just one packet in the morning, I have no problems. Sometimes I have to go to the bathroom a little bit quickly, but typically don't get diarrhea. Now I don't have to plan my day around my lunch break and can feel free to go to dinner wherever I want.

Thank you, cholestryamine!

CollegeStudent
Regular Member


Date Joined May 2011
Total Posts : 329
   Posted 6/22/2011 9:33 PM (GMT -6)   
I'm taking only 1/2 - 1/3 of one Questran packet a day and it's helping me a lot.
Initially, I was on Welchol and then Questran light but for some reason, these two didn't work as well as Questran.

I consume a lot of fat in my meals so it's necessary for me since I have two avocados, a lot of olive oil and at least 8 whole eggs a day
21 male, NYC
-Pancolitis 2008 Jan
-LDN 6/7/11
-Humira 6/14/11 no side effects
-80min+ daily cardio
-Pentasa 2g, 10mg Pred(tapering from 60mg)don't respond to steroids, Canasa(3x a week), Questran
-No HFSC, sugar, red meat, chicken, shrimps
-White rice+meat/fish+avocado+blueberry+homemade yogurt+salad!/cooked vege+OJ+Olive Oil+cooked sesame seed
-No supplements
-In remission. Nice 1 BM a day.

nawlinscate
Veteran Member


Date Joined Jan 2007
Total Posts : 655
   Posted 6/23/2011 9:40 AM (GMT -6)   
I saw my gastro doctor on Monday and told him that I was having a lot of gas as a side effect of the cholestyramine powder. He asked if the gas continued even when I wasn't taking the drug--and I realized that it did continue even on the days I skipped the cholestyramine (just not quite as horrific as the days when I took the medication). He feels that I probably have a bacterial overgrowth--and he now has me on ten days of Flagyl (ugh ugh ugh).

He said that, if the Flagyl doesn't solve the problem, then he'll prescribe me the Welchol pills. But he suggested that I check with my pharmacy, because lots of insurance companies won't pay for the pills when the cheaper powder is available.

I'll let everybody know how it works out. In the meantime, I continue to take cholestyramine. It doesn't solve all my problems all the time, but it really really helps.

StressedToHell
New Member


Date Joined Aug 2011
Total Posts : 1
   Posted 8/9/2011 4:59 AM (GMT -6)   
I am EXACTLY like Poopycat1!

For nearly 6 years I've had this "complaint". Been tested for various things, still no further forward. Like Poopycat1 (nice name by the way lol) I plan my life around toilet routes. I struggle getting into work and when I am at work it carries on! If I go out ANYWHERE I have to be aware of where the toilets are and how far inbetween they are, as I get a couple of minutes warning. So stressfull! I've taken so much Imodium over the years I don't think its working that well any more. My gastro suggested I try cholestyramine which I have just taken my first dose of today. I'm due in work in 3 hours, hoping there aren't any major side effects!

After reading all of these posts I am feeling positive about this medicine. I have no idea what it does but it seems to be working for you guys. I just want a normal life back where I don't have to miss out on days out, work, shopping!!!! It's ruled my life for nearly 6 years and really want this stuff to work.

Electricmomo21
New Member


Date Joined Aug 2011
Total Posts : 1
   Posted 8/11/2011 7:39 PM (GMT -6)   
Hi there, I'm new to the forum and completely at my wits end! I had my gallbladder out about three months ago, and since then have been in the same spot as many of you with chronic diarrhea. I can't enjoy a meal out anymore, and am often too exhausted and nauseated to want to leave the house anyway. I've missed so much work that I'm going broke, and when I do go to work, I'm
afraid I'm going to have an accident since there isn't a bathroom close to my work area. Anyway, I'm wondering if anyone has not had good results with cholestyrene, and if there are any alternatives out there. So far it doesn't help my diarrhea, makes me super nauseated, and makes me feel painfully bloated. I just started taking it. Does it take a while to start having a positive effect? Thanks all.

novaslady
New Member


Date Joined Feb 2011
Total Posts : 8
   Posted 8/12/2011 9:53 AM (GMT -6)   
I've been taking Cholestyramine for over 9 years now and it works nice for me. I take one packet in the morning but if I'm having a real bad day with diarrhea, I will take another one in the afternoon and it seems to help with some Immodium.
Diagnosed with CD at 53, now 62.
2 resections and 4 blockages, 2 hernias, ostomy and fixing hernia again.
Humera and Cholestyramine, Immodium at the present, used Prednizone, Methotrexate and other drugs in the past.

Jen39
Regular Member


Date Joined Apr 2011
Total Posts : 44
   Posted 8/12/2011 10:10 AM (GMT -6)   
Electricmomo21 ~ I had my gallbladder out in 2001 and after had diarrhea all the time. Then just last year I was diagnosed with Crohn's. So far the meds I've tried for Crohn's (asacol and lialda) have actually made my diarrhea worse. My doc prescribed Welchol, which is a cholesterol med, but helps to "soak up" the bile. It has done wonders for me!! Ask your doctor about it. I wish I had known about it sooner as I would have started taking it years ago.
Diagnosed with Crohn's Dec 2010

inohowufeel
New Member


Date Joined Aug 2011
Total Posts : 2
   Posted 8/13/2011 3:36 PM (GMT -6)   
Hi all...I just got prescribed cholestyramine for my microscopic colitis. I went undiagnosed for about 20years. I had diarrhea everyday all day and night and after many colonoscopies etc over the years no dr would ever say that I definitely had IBS or any other disease. Finally, I have another new GI dr who biopsied my colon and figured out that I have microscopic/collagenous colitis. So for anyone who has unexplained diarrhea please ask to have your colon biopsied for microscopic colitis. I can't swallow pills so that is why I was prescribed the powder cholestyramine and I am really hoping that it works and does not make me bloated or nauseous. I don't no what it is like to not have to go to the bathroom several times a day. It has been my life for so long. I have been really fortunate to not have to work during the day so I have always been able to be close!! Hang in there all my bathroom buddies and I will let you know how the cholestyramine works.

inohowufeel
New Member


Date Joined Aug 2011
Total Posts : 2
   Posted 8/15/2011 9:31 AM (GMT -6)   
Dear Stressedtohell- have you ever had your colon biopsied and checked for microscopic colitis/collagenous colitis?

hopefully1
New Member


Date Joined Feb 2012
Total Posts : 3
   Posted 2/9/2012 7:02 PM (GMT -6)   
I have taken the powder and the lomotil aswell anyone take lomotil? But it still comes everyday like clockwork. Why? ANYONE HAVE ANY ANSWERS?

Ron_T
Regular Member


Date Joined Dec 2004
Total Posts : 44
   Posted 2/10/2012 5:19 PM (GMT -6)   
Hi,

Most of this I posted in another thread but it is worth repeating.

I had about 36" of gut removed in 1973, this included small and large intestine including the ileocecal valve. This left me with chronic D. Questran was my best friend for over 30 years before switching to Welchol tablets. These are fairly large pills but they beat a gritty powder in ease of use and the way they work. I take 7 a day with meals, if I eat a spicy or fatty meal that is when I take 3 tablets.

Ask your doctor if this would work for you, it is a major improvement in my life, Using it is the closest I have been to "normal" since I was about 12 years old.

Best of luck, Ron

Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2120
   Posted 2/10/2012 7:49 PM (GMT -6)   
I've taken the powder for years, it's been my life saver. Before I couldn't do simple things like go to the store without gobbling Imodium, and even then I'd be in trouble. Going out to eat was a no no. With it I live a much more normal life, besides when I'm flaring badly. I take it mainly because I don't have a gallbladder, so I get a lot of extra bile dumped in to my system. I'm not interested in taking the pill form though. I think it's the powder that really helps bind things up in there.

I'd be concerned about having ulcers in there that aren't being treated though. Questran is great for diarrhea that isn't caused by inflammation. But masking the Crohn's isn't going to help things. I'd be afraid of waiting until they get too bad in there. I almost bled to death from ulcers that were never treated and they got too deep.

If my Questran stops working, and I still keep having diarrhea, I know that I'm flaring. It really won't hide it for me when things get bad. Then I need to treat my Crohn's disease.
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