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Cholestyramine-----AMAZING!!!!

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Irritable Bowel Syndrome
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Posted 3/23/2010 7:05 PM (GMT 0)
I have had IBS for over 18 years!!! I have no life.  I am married and have a 10 year old son. I never go to his Archery Tournaments or Baseball Games. I have missed out on alot of stuff I am so afraid I will have to use the bathroom and I have a problem with using public restrooms!!!  When I do have to go out at night (which is rare) I do not eat for the whole day.  I have a 47 miles commute to work each way and I carry a 5 gallon bucket in my vehicle just in case (luckily I drive a cargo van) I can be eating and I have to run to the bathroom.  I was told I have IBS.    I never go out to eat unless it is a place near my house!!!  I have had colonoscopies and endoscopies and all kinds of tests and nothing ever shows up

I went to a new Dr in January and he was the most egotistical idiot of Dr that I have ever met but I do believe he helped me.  I don't know if I will ever go back to him because he called me a liar when I told him my symptoms...I told him that I can eat something and within 15 minutes I am going to the bathroom and I can see it in my poop!!! He said "no that is not possible" Almost every question he asked, when I answered, he said "nope that is not possible" Man I was not happy!!!

I finally filled the script last Thursday that he gave me in January.  I saw the name of it and called him to question him on it.  The name of the RX is Cholestyramine.  When I googled it it said that it was used to lower Cholesteral.  My only problem is is my Cholesteral is only 106 to being with and I was afraid of lowering it.  When I asked him he said "There is no way your cholesteral is only 106, because you are not Chinese and you do not weight 100 lbs, there is no way that a person of your size can have a cholesteral level of 106"  I was shocked!!! Yes I maybe fat but I am healthy!!!Other then my stomache problems!!!  If you google Cholestyramine and IBS you get alot of info.

I called my primary care and he faxed this bozo my blood test results and proved to him that is only 106!!!  he seemed a little shocked when he called me back to say he would like to run blood work every 3 months while I am on this script!

So, since last Thursday I have not had any of the dreaded D.  I have not gone gung ho with it and tried going out to eat just yet!! But, I have been having normal BM's like I did 20 years ago.  If you have tried everything else out there like I had....try this!!!  it is a powder that you add to water and drink it in the morning.  I only have to take one packet a day other wise I think I would have Constipation. 

I had given up all hope and had just resigned myself to living with this for the rest of my life!!!  True it has only been 6 days but it has been 6 wonderful days with no Diarhhea!!!

Sheryl

Posted 3/25/2010 12:48 AM (GMT 0)
Sheryl, my sister has chronic diarrhea and has had numerous colonoscopies and they always read NORMAL. She is on disability due to this debilitating condition. I am going to get her to ask her doctor about this med. Please let us know how it goes....Tracy
Posted 3/25/2010 12:52 PM (GMT 0)
Well, it is day 8 and I have not had one bout of Diarrhea!!!!! I am on cloud nine!!!! I can't wait for Easter so I can eat and enjoy it!!!! I am thrilled beyond thrilled but I am not going to get to excited....well, wait I guess I am already excited!!! I am going to give it one month before I get REALLY excited!!!! I hope she does ask about it because she has nothing to lose by trying it!!!! Good Luck.
Posted 4/7/2010 11:22 AM (GMT 0)

Hi there:

 

I just joined this forum and saw your post about your new drug that seems to be working. Now that it has been a couple weeks, how is your IBS-D? Have you noticed any side effects? How about your overall mood?

 

I ask because I too have IBS-D, for 10 years, though only found out what I had about 2 years ago. I have done the standard stomach/intestine tests. Right now I am on Paxil, and I don't know how much it is helping, if any at all. I have tried Lotronex too. Both of these are anti-anxiety/depression medications since my doc believes my ibs-d is stress induced. Which I concur - however, I have yet to find a medication that really helps with IBS-D. Lotronex seemed to help more than Paxil did but it still was not great.

 

I also have low cholesterol levels - my overall health outside of iBS-D, in terms of blood pressure, cholesterol etc, is excellent.

 

Thanks!

 

Drew

 

Posted 4/7/2010 12:46 PM (GMT 0)
Well, I have been on it since the 18th of March and have had not had any Diarrhea!!!! None what so ever!

I did find out a couple days ago from the Dr that one of the lab tests they did showed that I might have a fat malabsorption problem.  he wants to do more testing.  He said that could be part of the reason my cholesteral is so low.  Fat malabsorption is uncommon he said.  I am not sure about that tho!  He wants to find the underlying reason for it.  Said it could be Crohnes or Pancreatic problems. 

But I am truley happy with the way this medication has been working for me.  The awful thing is I have to stop taking it for 5 days because the Doc wants to run a 72 hour stool test.  So I have to stop taking it 2 days before.  Thati s really going suck for me.  I don't want to stop taking it.

I would certainly ask your doctor about it.  You have nothing to lose.....and everything to gain!!!

Posted 4/11/2010 4:57 AM (GMT 0)
Yes this med works great i had my gallbladder takin out in october and suffered the diarrhea i lost almost 50 pounds in 2 months and since i have been takin it i haven't had diarrhea and my weight is stable again i feel like im getting my life back
Posted 5/22/2010 11:28 PM (GMT 0)

IBSBUMMER:

 

My doctor just prescribed this to me today.  I start taking it tomorrow.  I just had a colonoscopy and everything came back fine.  I had my gallbladder taken out 12 yrs ago and have lived with the diarrhea.  I have had many accidents along the way which can be embarrasing if anyone noticed.  I can't imagine drinking my Vanilla Latte and eating breakfast without immediately going to the bathroom.  I am glad to know others are out there like me and have found help.  I am crossing my fingers!

 

 

 
Posted 5/23/2010 1:46 AM (GMT 0)
GENERIC NAME: cholestyramine
BRAND NAME: Questran, Questran Light

http://www.medicinenet.com/cholestyramine/article.htm
Posted 5/23/2010 1:52 AM (GMT 0)
See here's the thing, while I have not been officially diagnosed with IBS my symptoms are similar. I am living without the bottom part of my colon/sigmoid and experience multiple bm's, 24/7. As long as I consume solids. Been living this way for 11 years now. Have it pretty much figured out. But I don't experience all out D as many of you have described (although I did have my gall bladder removed during my resection too). I don't have the yellow bile D or even D on a consistent basis. What I do have is the multiple bm's, and I go thru several stool stages (formed, semi formed, putty and then D, but not often D).

I have often wondered if these meds would help me even though I don't have D.

But my gosh it is great stuff if it helps you all that have D every single day of your life.

Me? I'd rather just keep my stool formed but not become constipated either.

Do these meds constipate a person? Just curious.....
Posted 6/6/2010 1:08 AM (GMT 0)
Google "bile salt diarrhea" and see if that describes your situation. If it does, you have to try cholestyramine or some other "bile salt sequestrant". IBS is just a bunch of digestive system problems that haven't been properly diagnosed. My "IBS" turned out to be bile salt diarrhea. After suffering for years, I went to a specialist who prescribled cholestyramine just on a hunch. It helped a little, so I asked him if I could double the dose. He rewrote the prescription for double the doses and, within one day, I had my life back again. It worked so well I could hardly believe it. I've been IBS free for years, but one day without cholestyramine and it's back.

TIPS for those who take it:

-- I split my daily dose into two half-doses so that if I forget to take it once, the consequences are less dire. The previous dose usually takes care of me.

-- Mixing the powder is a pain. I solved it by going to a camping store and buying a small plastic container with a lid. Think of one of those normal orange prescription pill bottles, then double the height and diameter in your mind, then imagine it made of white "tupperware"-style plastic, and that's what I'm talking about. Good camping supply stores have them in a variety of shapes and sizes. You pour a bit of water in, then add a scoop of cholestyramine powder, then a bit more water, snap the lid on, shake it wildly for about three seconds, pull the lid off and chug it down, then rinse the container. The time savings over mixing it in a cup (as described on the label) is probably a factor of ten! Just make sure you include enough water. With too little water you can seriously (dangerously) choke trying to swallow the dry powder. Make sure it's all soupy before you chug it.
Posted 6/6/2010 1:28 AM (GMT 0)
I want to clarify that when I said, "IBS is just a bunch of digestive system problems that haven't been properly diagnosed," I wasn't implying that if you haven't found a solution for yours, you just haven't worked hard enough to find the right doctor. Hardly. Some "IBS" cases may be caused by problems that are treatable by some doctors while other cases are complete mysteries to everyone--their causes completely unknown. I'm just saying that I think IBS stands for "I Don't Know".
Posted 6/9/2010 2:51 PM (GMT 0)
Hi IBSBummer again:

Now that it has been a couple of months, is cholestyramine still working? I hope so.

as for me,

Well, I havent yet asked either doctor about cholestyramine - but I plan to on the 18th. we were trying increasing dosages of what I'm on now, but its not doing anything other than making me tired smilewinkgrin . My IBS-D was never as bad as yours but, its failrly regular and very uncomrtable nonetheless. Its about 3-5 hours after I eat, I must use restroom. This is with 3 imodium a day, if I take more, I get constipated/naseous. My IBS-D is diarrhea in terms of the frequency of movements, which is about 10 - 15 times a work day, even with increased dosage.

So, I think I will ask him about cholestyramine - maybe it will help, in combination with my current meds.

Thanks

Posted 6/9/2010 7:55 PM (GMT 0)
Marsky, yes one of the side effects of this med is constipation. So if you do not have constant diarhhea all the time then I might be leary of taking it.



Eclipse, I am still taking it and I am very happy.....I have a life again. I would definetly ask your DR about it. It has saved my life!!!!
Posted 6/15/2010 3:51 AM (GMT 0)
IBSBUMMER-
Questran was a life saver for me also after my gallbladder was removed. I know exactly what you mean when you have to go so soon after eating and can tell what meal it was. There is also a pill called Colestid I have used also. I used to rotate between questran (powder) and Colestid(pill). I got tired of mixing and drinking the questran, so I would switch to the pills for a while. The pills didn't work quite a well, but still helped a ton.
I wish my surgeon would have prescribed this to me right after he removed my gallbladder. I had to wait a few months until I mentioned it to my GI doctor.

Take care,
Bill
Posted 10/2/2011 3:06 AM (GMT 0)
Hi all, I finally asked my internist to prescribe this generic powder for me to try. The can sat unopened on a shelf in our kitchen, in a cabinet with other meds (OTC ones). I was leary of trying it but after re-reading about it and all the benefits of trying it, I thought why not. It can't hurt me. My doctor prescribed 1 tablespoon per day but I started with 1/2 teaspoon. I felt great the following day and wasn't running to the bathroom all day long or having the dumping episodes start. By day 3 I was going less to the bathroom but still enough through out my day as if my body was reminding me - well are existing without your lower colon you know. lol

I took it for 6 nights and felt almost normal again. Then a weird thing happened, my right eye started acting up, I began to see something, possibly a reflection or image. I thought great, now I'm getting a severe migraine (called aura's), I've had this type of migraine about 4 or 5 times in my lifetime (in my mid 50s now). I googled side effects and although it's rare, a few people stated they had ocular or eye changes. That scared me something awful. So I skipped a dose that night. And within 24 hours the dumping was back, full force.

The eye thing is easing and I did have a headache with the eye symptoms. So maybe it was the migraine? But I didn't feel that bad with it (not like it was in the past).

Long story short, I missed those very nice 6 days w/o D, so I went back on the powder last night.

I fully intend on getting an eye exam to rule out a problem.

Do you all think this powder would cause my eye problem (if I had to self dx at this point, I'd guess cataracts forming?). Weird coincidence that I start the powder and then 6 days later experienced vision troubles.

But wow when it was working, it was great for eliminating D.

Long term, is this powder safe for us (kidney wise)?
Posted 7/1/2012 1:47 AM (GMT 0)
I know it has been awhile since anyone has posted on this sight and i'm hoping i get a reply back as i have been suffering with "D" for 10 years now.It all sterted after i had an emergency C-Section with my 2nd daughter about one mouth later i noticed everything i eat would go straight threw me i thought this could be just a side-effect from the C-section and that it would pass but unfortunately it didn't :( It took me about a year to go see my doctor about my D as i was only 21 at the time and was extremely embarrassed talking about my BM's but i had know choice it was running my life i was living on gastro-stop and needed to find out what was going on with me so i spock to my doctor (actually several of them) and i was sent for a colonoscopy and endoscopy, blood work stool tests, xray and finally a ultrasound which showed i had gallstones and one was stuck in the bile duck and my doc said my gallbladder had to be remover ASAP and this was most likely the cause of my D, i was so excited to have it removed i thought i was going to get my life back, but to my disapointment the D returned :( But it got worse 16 months ago i had to get my hasband to take my to the Er as i had eatn lunch about 15 mins later got D i falt dizzy, so tied i could have just gropped to the floor my heart was racing and falt sort of breath the hospital put it down to anxiety and sent my on my way ..but now 9 times out of 10 after i eat then get D i get those other symtopms with it does anyone else experience them/? I have had to call two ambulanes because i it i feel like i'm going to die i cant keep living like this it has taken over my life my kids lifes i cant go anywhere because i'm so afraid i will get D and those other symtops i cant eat out. but anyway i came across a sight on the net called habba syndrome and bile salt diarrhea i spock to my doctor about it and she did some research on habba syndrome and said they ues to call it dumpping syndrome back in the day (which i looked up myself and i have most symtops of dumpping) so she gave me cholestyramine to try i have had it here for a few months but i'm a little scard to try it for a couple of reasons one being - what if it does'nt work (i have ran out of idea's of what to do next) two being side effcits and sometime i dont get D everyday most days but not everyday and somedays i'll only get it 2-3 times in the day other days i could have all day even if i drink water i'll get it and it's alway watery and yellowish sorry i no it's gorss :\ so if i dont get D allday everyday but most days do u think i should be taking cholestyramine ? i really dont want to get constipated
Posted 7/3/2012 3:07 AM (GMT 0)
Hey fed up.....i get the dizziness and faint episodes too.....almost passed out 3 times....never lost consciousness, but i couldnt walk, i sweated profusely, heart raced, legs shaking, could barely talk.....

Still havent found out exactly whats wrong. Each time i was treated by paramedics or was taken to hosp by ambulance. Each time my rbc was low, calcium low, magnesium low.....low electrolytes so ER docs chalked it up to dehydration, but my doctor looked into it further w the RBC count and told me I was anemic. Im guessing its because of the chronic D. Colonoscopy came back OK. Still following up with docs in the next two weeks, but i am taking some heavy duty pro biotics, iron supplements, high pitency b12, b6, folic acid....and liquid vitamin a. Im seeing a subtle change....in BMs but the fatigue, weakness, dizzy spells.....im good one minute, then i could practically drop the next. Its super frustrating to have zero energy except to take care of myself and mybasics.
Posted 7/3/2012 6:38 PM (GMT 0)
cholestyramine HAS HELPED ME 100%
Posted 7/7/2012 8:56 PM (GMT 0)
Cholestyramine is my hero.. along with my new gi doctor.. after gallbladder removal in 2002.. over the years the d has gotten worse and worse.. I would have the sweats.. cramping.. bloating racing heart.. shaking.. weakness.. thinking i was dying.. but just kept on trying to work and make it through the attack as I've learned to call them.. In 2009 I was laying in the floor of my business with an attack and I noticed chest pain so I crawled up to my desk and took my bp.. My heartrate was 154 so I drove myself to the ER.. They admitted me with Afib.. I kept telling them to let me up to go to bathroom but of course heart and stomach to the ER is heart.. I was put on Sotalol and released after 4 days of watching me on the med.. 2 weeks later I went into fib again.. but each time my stomach was really rumbling.. gas.. ect.. I just made the best of the attacks and worried about my heart too!! seemed that when my stomach was messed up bad for days at a time.. my heart would start skipping around. Dec of 2011 I had abad attack and it felt as though someone was stabbing me in my liver.. where I had been having a constant pain for months.. but I thought I was dying.. so off to the ER.. they found nothing and here I was again.. finally I had colon and egd in Jan.. my 3rd and my gi doc said it was divert.. bile reflux.. acid reflux.. bile was everywhere.. I started drinking cholestyramine 2xday and my life has been much better. I still have attacks.. but not as many..
Posted 12/4/2012 12:48 PM (GMT 0)
I've been taking cholestryamine powder with either orange juice and recently punch flavored Gatorade and prefer the Gatorade it seems to stir better and no clumps then when you out in water or juice. I don't need a shaker when using Gatorade. Ok so yes, it has really helped me and most days I don't have any problems. But sometimes, the D still happens and the dumping syndrome with the hot and cold chills, dizziness, and general malaise really sucks! Yesterday I had taken my powder, and then right after ate a handful of peanuts because I was so hungry. Within 10 min i was running to the bathroom with D. Now I know I didn't wait long enough after taking my powder so that was the culprit. But it seems once I have one episode, then I am likely to have 2 more in the day. Even when intake Imodium! Currently i take one packet of powder per day in the morning. So anyway, after the first D, i had to lay down. For me, i also get anxiety. So i am laying there with anxiety, hot, sweating, cramps, my butt puckered (sorry tmi) from the bile salt acid,and just miserable! I wait 30 min, and get up, still feeling week but i have to work (I work from home).

So sometimes I do everything right, wait 30-60min after taking the powder to eat, etc, and I still get D. I had gastric sleeve surgery in 2009 but always had the BSD since 1998 when my gall bladder was removed. So I am anemic, but I am also obese. Most doctors don't believe me when I would say I would have D 3-6 times a day. Even now my GI doc looks at me and says he has patients losing weight that have this problem. I wish! I mean if I am gonna suffer, would be nice to at least have some positive side affect! (Not to make fun of those who can't gain!).

I also have hypothyroidism and taking synthroid but there is something wrong because I cannot lose weight, even with this problem. I haven't had a doctor believe me enough to want to dig deeper. i guess they all think I must be drinking shakes or something since I can't eat a lot. I've even given them food diaries and they still think I must be leaving something out. I eat a good breakfast, whole wheat toast, light butter, with oatmeal. For lunch maybe half a sandwich on whole wheat. For dinner, 2-3oz of chicken, a vegetable, no starches, so usually another vegetable. I don't drink soda, sometimes unsweetened tea, mostly water. Snacks are light yogurt with fruit. i cannot lose! I stick to this diet because I like it, i don't feel like I am missing out. Once in a while I will get a frozen yogurt, but that's it. I am 5'5 and weigh 260.
Posted 12/22/2012 2:50 AM (GMT 0)
Questran has been around for about 60 years. The one drawback to it is it can bind up prescription medications along with acids in your system so that you do not get the full effect of your meds. The manufacturer recommends taking the Questran 1 hour before other meds or four hours after. I take VSL #3 DS 6 hours after the first dose and 6 hours before the second dose. I take meds one hour before each dose.
Posted 12/22/2012 3:42 AM (GMT 0)
FYI, I tried cholestyramine 3 times in the past 18 months:

First Rx - worked great. It was my miracle drug. Formed stool, easily passed, very little D and dumping episodes were nil.

Second Rx - suddenly, it wasn't working as well for my gut. I even called the pharmacy at one point and the tech told me I had the same exact med as before. Right before refilling my Rx for the third time, I considered doubling my daily dose.

Third Rx - a different pharmacy tech discovered I had a different manufacturer first time I filled my Rx. That's why can #1 worked like a charm and can #2 worked like a placebo, I joked it was like mixing coolaid - nada, on my annoying D like symptoms.

So, in a nutshell, Sandoz is my Cholestyramine manufacturer, the one in between was PAR Pharmaceuticals. Be careful if this med works great for you and when you refill it, save your old can, make sure you receive the same exact one for refills.

What I put up with for months with the one that didn't work well, I even went off of it for a long time, thinking it just wasn't my medication anymore, I grew quite sad about it too. Hence why the first Rx was filled about 18 months ago.

All I know now is I will always make sure I receive Sandoz and never without it.
Posted 8/18/2013 1:47 PM (GMT 0)
Ihave just been prescribed these sachets after trying everything else my doctor could throw at me. Nothing has worked. I tried alternative therapies, remedies from health food shoos. Still nothing worked. I had my gall bladder removed 3 years ago and have been left with chronic loose stools. My life has been so restricted. My doctor said it was IBS but after a year of seeing a dietician and going onto a very strict food regime she said it couldnt be IBS? I have had cameras both ends and diagnosed with diverticulitus but still no reason for the loose burning stools. I finally went to see a private consultant who has prescribed me these sachets. For once I am actually excited after reading all the positive stuff on here. Im gonna start sachets tomorrow please god let them be what Ive been searching for. I cant bear my life at the moment and couldnt forsee myself suffering with this for much longer. Fingers crossed and I will update any changes i see. This is my last resort mad
I cannot continue planning every step of my life around knowing i am within reach of a toilet. I have been so restricted, stuck in a dead end job I hate, I hope these sachets are as good as everyone says.

Post Edited (sistacaz) : 8/19/2013 9:24:05 AM (GMT-6)

Posted 8/19/2013 3:30 PM (GMT 0)
Day 1....struggled with my first sachet....yuk...no matter how much I shook and mixed I couldnt get pat the grittiness of the powders in my mouth. Any recommendations on what to mix with to make it easier to tolerate??? I tried it with cold water from fridge, soda water then tonic, neither of these suited my palate.. 3 sachets used, only managed about 100mls of fluid. However Ive only had one "movement" today which is amazing, but need to get past the drinking bit.....Il happily take a tablet the size of a golf ball but have issues with powder drinks, cant take beechams, andrews, vitamins that need mixing with water, think its something that stems back to childhood, some sort of mental block....I need to get past, but Im gonna struggle unless I can find a mixer to make it easier to tolerate. Any recommendations welcome
Posted 8/19/2013 5:47 PM (GMT 0)
I would very strongly suggest you make sure Sandoz is your cholestyramine manufacturer. It doesn't contain aspartame (wicked stuff, a poison over time wreaking all sorts of havoc in our bodies). PAR Pharmaceuticals produces cholestyramine as well but it definitely has aspartame in it and I was inadvertently on it for about a year, it acted like a placebo on my gut, didn't work as well as the Sandoz one. However I've been recently diagnosed with Cochlear Meniere's Disease and suddenly lost 50% of one ear's hearing, I'm learning all sorts of things by reading medical journals and books on Meniere's, it can sometimes be attributed to having aspartame in your system, so many products contain it from diet and soda drinks, to gum, to mints, to sweets. Beware.


But to your question at hand, I take my cholestyramine in powder form, using a small plastic round container with screw on lid, I use any juice, from apple to orange, even pink lemonade, and then shake it well. I have a glass of clear water handy to drink right after I down the med. Then I brush my teeth - that's very important. Always brush your teeth after consuming it. Another idea is to stir it into applesauce (use one of the pre measured kiddie serving sizes), pour the applesauce into a larger bowl, stir well, add some water and eat it fast. Drink water, and follow by dental brushing.
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