HealingWell
Search Close Search
☰

Anyone taking Cholestyramine Powder for Diarrhea?

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
1 2 34 5
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/7/2012 4:08 AM (GMT 0)
Hi all, although I don't have Chron's, I noticed this two page topic about Cholestyramine. So glad I found you all! I tried this medication in 2011 and it was a miracle, I suddenly didn't have D, dumping episodes or the yellow bile output. It was - wonderful. Then when I refilled my Rx they switched me to another manufacturer, unbeknownst to me. I noticed Rx #2 just didn't work like the first one, I even upped the dose and still, it was if my body was immune to it. At one point I called the Pharmacy and a young tech told me it was same exact med I had filled the first time. I needed a refill today, so I filled it and before paying for the medication, I asked the pharmacist if I had a different medication the first time. He said - no, it's all the same med, but you had a different manufacturer. It as if a light bulb went off, I could tell he's heard patients tell him this in the past.

So long story short, he ordered me a new Rx, with Sandoz as the manufacturer (not PAR, the one I had last time, I joked it was like mixing coolaid in with juice, or a placebo).

If anyone is struggling with this med after it once worked well for them, see if your pharmacy filled your Rx with another brand/manufacturer.

Apparently this detail is very important. I can't wait to begin taking this each day, on a regular basis, I want to feel as normal as I can. They did give me a sample packet and I started with a low dose today. Chomping at the bit for the next one. The right one for my wacky GI tract!

If it works as well as I remember it doing so, I may fill this Rx more than once over the next 6 to 12 months, just so I have an extra sitting on my cabinet shelf.

It's great stuff (I hope to make this a fact once it's in my system again).
Posted 12/10/2012 7:26 PM (GMT 0)
Marsky,
thank you for sharing your experience with the rest of us
I been taking Cholestyramine 4 grams manufactured by SANDOZ for the last 10yrs.
It gives you your life back. The side effects that I personally experience were:

1)Memory loss,
2)Too much Gas

My doctor gave a new Cholestyramine alternative, it is new. Its is called:

Welchol Powder( NOT the pills, the pills didn't work that well) ,Powder just like cholestyramine)
3.75 g colesevelam HCI. powder packet.
By Daiichi Sanko

It works great for me the doctor gave me a sample packet and ever since that's all I take. It absorbs the bile very very well much better than the Welchol pills and I had much better results than any other prescription. No gas and no memory loss.

*I am not a Medical doctor,so I am not providing medical advice , this was just my personal experience.

Post Edited (ileumhealth26) : 12/10/2012 12:34:26 PM (GMT-7)
Posted 12/11/2012 1:02 PM (GMT 0)
Thank you for your reply. I am currently trying to find my perfect dosage size for the Chol. made by Sandoz. Initially I started with 1 tablespoon, what I had been taking with Rx #2 (manufactured by PAR), which was too much for my touchy gut. Now I know Rx #2 did nothing for me and I've been w/o any Rx help for the bile output. I am now taking it much more slowly with this current can of Chol., 1 teaspoon at bedtime. Haven't noticed the memory loss (but ack, I'm 57 and how could I tell anyway? lol), I will however write down the info you gave me and determine as time goes on if this Chol. med will be my magic cure all. Like it was in 2011.

My main point in my reply was for everyone to always check their refills carefully, not all generic medications are made exactly the same way. They are different. I sure learned the hard way.

But again, thanks for your reply, I'll definitely ask my doctor about the Welchol powder. If this doesn't work.
Posted 12/15/2012 9:52 PM (GMT 0)
I'm having gas & memory problems also, Have a few questions.  Welchol powder have any  taste?  Also, should I ask the pharm for the Sandoz?  Now and for the past 6 years I've taken Questran brand as I cannot tolerate the taste of generic.  Large price to pay for that, but I have to take this stuff every single day.  So far Questran is odorless, tasteless,  I mix 1/2 pk with 2 oz of water and chase it with 8 0z of water...not too bad!  I've tried generic, and that orangy sweet taste reallly gets to me.  Good infomation here! :-)
Posted 12/18/2012 5:20 AM (GMT 0)
Hi ,Olive2, how are you? Welchol powder does not really have that much of a taste. Even though, the packet says that it is sugar Free and "Citrus Flavor". As long as the medication gives me my life back, I don't worry too much about how medications taste lol :) , I have tasted questran, other generic white powders with no taste, Cholesteramine with Orange flavor. The one I like the most is Welchol, it taste like good quality powder. Over all I been very happy, the absorsion is very good, it binds to the bile. I feel that I can eat more foods without worrying. Definitely worth talking to your Doctor about it. Have a great night :).
Posted 12/18/2012 11:21 PM (GMT 0)
Ileumhealth,

Thanks.  I will be asking my dr for this, will be asking Pharm for Welchol by Sandoz.  Thank you for sharing your information.  Really appreciate

your help.  It does sound like what I need, I do have issues with memory, bloating, bile absorption.

Olive 

Posted 12/21/2012 1:30 AM (GMT 0)
Welchol by Daiichi sanko ;) happy holidays
Posted 6/19/2013 11:11 PM (GMT 0)
I had my gallbladder removed 3 1/2 years ago. Beginning the day of the surgery I have had constant (a minimum of 6 times a day, no matter what I eat) every day. This past February, the excess bile that was causing the diarrhea began causing Bile Reflux Gastritis symptoms, meaning debilitating stomach aches (I thought I either had an ulcer or cancer!). In order to get rid of the bile my doctor will only prescribe cholestyramine (Questran). The problem is I can barely take a sip of the stuff before I start gagging rather violently. My question is: has anyone found a way to mix the cholestyramine so they are unable to taste it?? I have tried orange juice, yogurt, protein shakes, slim fast, ensure, and kefir. It remains gritty and unpleasant no matter how long I let it sit. I realize there is probably nothing I can do, but if anyone has any suggestions, I would greatly appreciate it! cry
Posted 6/20/2013 7:08 AM (GMT 0)
Hatingmybelly- I've taken it for years, so I'm probably just used to it. That last swig is always hard to take though! lol I actually drink it in Crystal Lite fruit punch. It is of course still gritty, but it hides the taste a bit. Another you could try is apple sauce, maybe the texture of the apple sauce will throw the grittiness off a bit. Good luck! It helps me so much that I just kind of got used to the taste and grit.
Posted 6/21/2013 1:20 AM (GMT 0)
Hating my belly...  Since posting this, I have changed Dr's.  New one is Holistic/Medical.  I am on a diet of Gluten Free and Dairy free.  Easier then I thought it would be, and has made a world of difference.  He also put me on a natural thyroid med Armour although you get it from the pharm/prescription.  My vitamin d level was really low , so I'm now on that 3 x's a week.  And since he put me on a different probiotic (Ortho Molecular Products "Ortho Biotic" and InflammaCore, I haven't had to take Questran...first time  in 6 years! 

When I was taking Questran (brandname only for taste, but expensive. Cheaper from Canada) Here is how I took it for 6 years.

Place the Questran in a small cup, add 2 or 3 oz of water.  Fill another glass with plain water.  I would take small sips of Questran chasing with the plain water, went down much easier.  Just make sure you drink the 8 oz of water one way or other! Or you WILL have problems.

I still have my packets of Questran in case the other stops working.  It worked well, but I had bloating and acid stomach and I think Questran was to blame?  My surgeon said I had acid stomach (gerd) put me on Priolec, I have stopped taking that also, since I don't seem to be having problems with those issues with this new regimen.

One thing I've learned.... I cannot overeat at any meal without paying the price.  Also certain foods really upset my system.  We are all different, so keep a journal and find out what is aggravating your system.  Not sure, But I think the bowel resection has a lot to do with mine, its almost like I had gastric bypass! ( I had cancer surgery).

Hopefully this helps you in some way.  Hang in there you will find whats right for you.  Thankful we have the internet, don't know what we did without it.   

Posted 6/21/2013 5:55 AM (GMT 0)
I take the Questran because I don't have a gallbladder, so my liver just dumps all the bile in to my system. Rather then having a gallbladder distribute the right amount. No amount of not eating dairy or gluten would help with that. But honestly I'd probably rather have my Questran then give up those things anyway, but I don't have an intolerance to those foods anyway.
Posted 6/22/2013 5:20 PM (GMT 0)
Jen,

 whatever works for you is good.  What works for one, sometimes not for others.  I've tried so many things, and this I must say really works for me.  I do miss bread tho :)  They have gf bread and it taste better if you microwave for 5 to 10 seconds. 

So far I'm not bloated, pain, belching and running to the pot .  I haven't been on this very long and hope it lasts.  Its soo peaceful. All is quite and I haven't  had "quite" for many years.  I hope you have continued success , that's what we all want. 

 I do take a very strong probiotic and inflammatory with this diet, also no soy or dairy.  I'm still learning.  But feel its is worth it.  There is plenty of food to work into my diet that I haven't considered before and it taste good.  Side effects so far is I've lost a few pounds!  I did not realize how much wheat I was eating! (almost everything I ate).  Sorry to go on and on. 

Wishing you the best with this.

Posted 7/3/2013 4:41 AM (GMT 0)
I also was taking Questran but now that I have more bowel narrowing, when I take the powder, I get more bloat, heartburn, bad breath and what sometimes feels like blockage, but those without narrowing problems it is a big help to relieve diarrhea.
Posted 7/3/2013 3:05 PM (GMT 0)
Hi, I have been taking Tylenol #3 for 16 years or more for my Diarreah and it works.
Posted 7/3/2013 3:06 PM (GMT 0)
dorri,

I'm now taking Inflammacore (my intestines are really inflamed) and Ortho Biotic (very strong probiotic, with lots of different strains).  My new Holistic/MD prescribed, I get them at a Compound Pharmacy.  So far they are really working for me without any side effects.  I'm also doing the gluten free diet/dairy free/soy free. and I feel better then I have in years.  I'm hoping it lasts, it has been a month. 

So what happens with the narrowing?  I probably have that and don't know it!  Does it go back to normal after Questran wears off?  You are right, Questran works wonders  for some and even me for years and for that I'm greatful, I would not have been able to leave the house without it. If this stops working I will have to go back to Questran.  Keep us informed as to what is working for you, these forums really have helped me a lot .  

Ladylou, Tylenol 3 works but is addictive, I took that for a short period and it really tore up my intestines.  Took awhile to get them back on track.

Posted 7/3/2013 7:24 PM (GMT 0)
Thanks, my narrowing is caused by scar tissue, but when I go through bouts of inflammation, the narrowing becomes even worse, whether it is the area surrounding it or right in it, don't know. If I get the flare under control, it gets back to it's pre-inflammatory state, but unfortunately not to it's original state without scar tissue.

My doctor told me I can take tylenol 3's as well to control the diarrhea, and I did use it at first, but think it made me drowsy or something and I quit taking it. I's been a while now.
Posted 7/3/2013 11:03 PM (GMT 0)
dorri, My surgeon thought my problems was scar tissue and it could have been, he did a scope and saw a lot inflammation and he thought acid, so he gave me Prilosec, it just didn't do very good. I switched from my primary internal med to a Holistic/M.D. and he gave me the InflammaCore and Ortho Biotics and these have changed my life back to almost normal. I have to have a full stomach when I take the Ortho biotic or I have some problems. Inflammation for that long is not good, he said it would take awhile for it to heal. One bad thing is I have to pay for these as they are natural meds. So far its worth it tho. I'm also like I said GF., and think that Really has helped, just a few days I could tell! Mostly its just bread, cakes, donuts bagels cracker etc., not too bad really.
Posted 7/4/2013 2:52 AM (GMT 0)
002 it's good that you found something that worked for you. I tried so many supplements and nothing much worked outside of slippery elm, not to mention all the things I was trying cost me so much money. With herbs they tell you, you have to take it atleast 3 months, so they keep your business going, and after 3 months there still is no improvement. There should be a law to regulate those things. They charge more than many of the pharmaceutical meds I was taking, and like you say it isn't covered. Mind you, if something worked I would have kept taking it, but with some supplements, they made the inflammation even worse.
Glad that you found something that works for you.
Posted 7/5/2013 1:49 AM (GMT 0)
I'm glad you are doing better Olive, hope it continues. I agree that what works for some won't work for others. In fact I don't think Questran is really ever used to treat Crohn's. Certainly not the inflammation. I think it's mainly used for those of us without gallbladders, and for those having bile salt diarrhea after resection surgeries. I suppose others could be using it to help with diarrhea from Crohn's, but I've never found it to to help with flare up's. That's usually how I know I am flaring is because the Questran isn't enough to help anymore.

Thankfully the humira injections I started a month ago are really helping my Crohn's. The Questran is just there to help with the fun bile salt diarrhea I get with no gallbladder. But lately I've been able to eat pretty much anything symptom free, it's been wonderful!
Posted 7/5/2013 4:36 AM (GMT 0)
I have been on Cholestyramine for more than a week now but it wasn't prescribed for me for lowering Cholesterol. I had constant diarrhea too for months and other symptoms like fatique, loss of memory, nausea and overall feeling awful. Turns out it was mold in our house that was below normal levels but I'm allergic to mold. The Cholestyramine is the only known treatment to get rid of the toxins that mold produces in your system. It did stop the diarrhea but I took it with orange juice, which I know gives me diarrhea and it's been a good balance so far. You can go to www.chronicneurotoxins.com and take a $15 visual test that will tell you if you have toxins in your body that are causing you all kinds of weird symptoms that no doctors can seem to figure out is wrong with you. Dr. Richie Shoemaker is the one with the web sit, the author of Mold Warriors and has treated more than 2,000 patients with this protocol with great success. Good luck.
Posted 8/7/2013 7:18 PM (GMT 0)
I have been diagnosed with microscopic colitis after a year and a half of disabling diarrhia. I started taking the powder form of Cholestyromide which works well, but I cannot take it more than once a day or I get terrible gas cramps. So it was a problem when I traveled or had a long day away from home. Because of this issue, I just began using Whelcol tablets because I read here that it can cause less gas. I am hoping that this will work better for me. Imodium no longer works for me at all. This is a wonderful forum!
Posted 9/20/2013 12:33 AM (GMT 0)
Hi I am new to this site. I had a whipple surgery 6 years ago for a tumor on the head of my pancreas. They took the head of my pancreas plus part of my stomach and gallbladder out and some of my small intestines. I am having problems with bile in my stomach. The GI Doc prescribe me welchol at first but it would of cost me $1000 a month for it so he changed it to cholestramine powder. I just started taking it today. ha anyone had any problems with this medication? I am going to my surgeon so they can check my liver.... yeah
Posted 9/5/2014 12:21 AM (GMT 0)
Cholestyramine has been amazing for me - a true life changer as now I don't always have to worry where the closest bathroom is for sudden diarrhea. However, I was told by my specialist not to use it while trying to get pregnant due to the "class" of drug it is and the lack of proof that it is OK to use during pregnancy. Anyone know of an alternative that can be used during pregnancy to help with diarrhea?
Posted 9/8/2014 4:22 AM (GMT 0)
I haven't read the whole thread, but I see no logical reason for you to not be treated for your colitis. After all, you have ulcers and you have diarrhea severe enough that it is bothering you. There are treatments that are not tough on the body such as mezalamine.
Posted 10/23/2014 5:04 AM (GMT 0)
I have been taking it for 5 years because i was one of those LUCKY ones after my gall bladder operation I have diarrhea every day if i dont take this or Loperamine (spelling) Now i noticed it is not on the list for
my AARP drug insurance to cover. I was thinking of getting the pills but I have heard they are very expensive.
✚ New Topic ✚ Reply
12345