Anyone taking Cholestyramine Powder for Diarrhea?

I have had a lot of medical history before this: 2x AML, type 2 diabetic, chemo, radiation, heart failure, a lot of others, but I'm pretty healthy now, just controlling the diabetes.

I am currently 24, and I have had bad D since I was 22 (finals week of college). For months I didn't know what was wrong and I finally went in for a colonoscopy. My GI said he could not find anything wrong, so I have been living on 4 immodium pills/day since then, but still can not find an answer.

It's weird because It never happens in the morning, it's always around 6pm and later. There were times that I couldn't sleep because I would have to keep getting up.

I'm now on a gluten-free diet, but it doesn't seem to be helping much. My GI just put me on cholestyramine powder, and I've tried it for about 3 days and it almost seems to make it worse, not mentioning the nasty taste of it.

Are there any suggestions out there? Before this all happened, I was 105 lbs since sophomore year of HS, now I float around 85-90. I'm 5'2 (growth deficiency).

Yes, it helps control it, but never completely got rid of it.

Cholestyramine has not worked for me! Started to take in 2012, after my surgery. It sent me to ER with rectal bleeding! It is rare, but does happen in some of the cases. Since the surgery, I am suffering from chronic diarrhea. The surgeon said that I was going to have loose bowel for a while. It is almost three years since the surgery and every day is a struggle!! I have bad bile salts diarrhea and do not digest most of the nutrients or fats. I was given another medication, similar to Cholestyramine, in pill form. The gas pain were excruciating. I am trying to take Cholestyramine again, this time only once at day. It helps with the bile salts, but it makes the diarrhea worse! In reading the pamphlet that comes with the medication I saw that the inactive ingredients of Cholestyramine, among other, are SUCROSE, SORBITOL, FRUCTOSE! I have an intolerance for all of those ingredients. There is a pure form of Cholestyramine powder and comes from a compound pharmacy. Does anyone ever heard of such kind! It is better for people like me, who have food intolerance and allergies!

dorri,

thank you very much for your answer. I do not know what I have to take anymore. I saw my GI yesterday she said I cannot take anything until she runs some more tests. I have had many side effects from most of the medications given for Crohn's. I am allergic to aspirin and cannot take any med. that contain mesalamine. like Asacol, Lialda, Apriso etc. At this time, I am fighting thyroid cancer and taking medication for it, which also gives diarrhea as side effects! I cannot win!!!!!
Suffering from Crohn's for almost 30 yrs. ( I am an old woman) and taken just about all the med. available. Also been on Humira and Remicade and got neurologic and cardiac problems!

ronbo 2/28/2015

Thanks 4 all the info. I've been having issues with diarrhea for over 10 yrs. My new gastro doc gave me imodium and dicyclomine. I remembered reading online about cholestyramine. After CT scans and Colonoscopies I hope this works.
My initial problems were a 4cm and 1cm gallstones which have been ruled stable. The gastro doc said that my diarrhea was due to my diabetes. I believe that too much bile is entering the intestines cuz my stools started to look greenish in color. I'm glad I have the type of relationship that allows me to have give and take with my doc. I will keep all of you abreast of how I'm doing. Thanks!

I went through all of those problems more than 10 years ago and what made me well was the macrobiotic diet. I'm not strict with it now, and when I eat out too much the problems return, so I go back to my strict macro diet to get well again.

This forum has giving me some hope. I am starting this medication today. I have had chronic diarrhea since the end of June. I felt that I should just take my pillow in the bathroom as I pretty much lived in there 24/7. God bless each of you.

I am so glad I saw this, I am on Cholestyramine Powder, I love it. I was so sick and I was losing weight. I tried everything from holistic to acupuncture everything. Nothing would take away my symptoms. Then I went to this dr who said I didn't have Chrons or colitis or IBS, he said it was my biliary gland. But I was wondering if he is even right, has anyone ever had there biliary gland checked and how do they do that??? Can I stay on the Cholestyramine Powder long term??? I have been eating, food tastes so good, I have been sick since 1993. Since on this powder I haven't been sick in 3 weeks, at first I was sore. Even now I hurt a little because I have had the diaherra for so long. Any info is appreciated thankyou :)

I had my gallbladder out in 2002. Since then I have had chronic diarrhea. Been on different meds but they haven't seem to help. I saw a new GI doctor and I was prescribed Cholestyramine today. A little confused. Do I take it first thing in the morning mixed in with juice before eating or drinking? I was told to take it once a day. Thanks

Thank you Jen77. I hope this helps. like a lot of people in this forum. I can't be too far away from the bathroom. I have even resorted to wearing depends, as sometimes I do not make it to the bathroom on time. I am tired of feeling tired having this be the center of my life and wondering if I am able to go out of the house for awhile.

Hello everyone. Just joined after finding this forum looking for information on Cholestyramine and gas.

I have been taking it in power form for almost a year but now have been getting really bad gas in the afternoons and evenings (most days). BTW, I get it from Express scripts pharmacy (online) and they send it in cans, not individual packs. It is much cheaper and I get so much more than I had before.

I have NET (neuroendocrine) cancer and have had my stomach, 80% pancreas, gall bladder, spleen and an adrenal gland removed. So eating is a challenge and I need to have the calories to maintain/gain weight. I eat many small meals a day and am on a variety of medicines and injections. The Cholestyramine was prescribed for diarrhea that is one of the symptoms of carcinoid syndrome that is common with this cancer. There is a new drug out that was just approved for this called Xermelo - you take it 3 times a day and it lowers serotonin levels and that will reduce the diarrhea. I am not sure if I want to start this medicine or try reducing the amount of Cholestramine (or more closely monitor the time I take it and when I eat). But I am seeing my doctor tomorrow so I will ask about Welchol Powder as a replacement as many of you have stated that it helps to not have the gas.

I don't know if I have memory loss. I do get a little dizzy sometimes and I get a runny nose (usually when I am on the toilet). The Cholestramine seems to regulate my system so much that I use the bathroom once a day, first thing in the morning (6:30) and when I have to go, I really have to go. Its often foul smelling, but not always. Seems to coincide with when I am having bad gas, I have bad times on the toilet. I take a can of Unicorn Gold with me to help remove the smell. It does a decent job.

I am hoping and praying that I can get to a better place with this med, or replace it with something better.

Thanks all

tbog707 - Prevalite is nasty and I could never find a way to make it better. I always request the Sandoz brand because it is much more palatable and dissolves much better. I found that the V8 type fruit and vegetable juice works the best (if you have an Aldi location, their brand works just as well as the V8 and costs a lot less)

Hello all...my son (15) takes cholestyramine powder and truly hates it..he will take it but lots of gaging etc. But it does wonders for him when he takes it. I was looking at the capsule filling machines and wondering if anyone has tried this? He did not respond well to the pill form so that is out for now. I was wondering if there was any reason why we could not make our own caplets with the power and take it that way? Has anyone tried this? Is there a reason we could or should not do this?