Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
mcardle3 wrote:I bloated badly while on Cholestyramine. I am now wondering (as I was on a regimen of Cholestyramine while diagnosed with IBS all those years) if it may not have been the gluten bloating me and I blamed it on the drug?
If gluten was still in your diet then, it was almost surely the cause of your symptoms.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Well, folks, I have been following this thread for a while. It sure sounded to me like bile acid might be playing a role for me, and so, a couple of weeks ago, I asked my GI doc if she would agree to let me do a trial course of Welchol (in pill form, because I would gag on the gritty liquid stuff). She immediately called in a script, and I have been taking it for about two weeks now. Let me just give her another shout-out: She knows I follow this board, and has actually, on a couple of prior occasions, asked what the buzz is here on a couple issues.
I'm trying to figure out what I think. There is definitely much less yellowy/mucousy liquid visible. There has been a reduction in the number of BMs/day. But I am still trying to figure out the dosage. She told me 2pills/day and to stop if constipated, which I borderline am. One pill/day doesn't seem to do it though. Tomorrow, going to start trying a pill and a half/daily.
Perhaps this will be a piece of the puzzle for you, like it is for me. I don't think you can cut the pill in half, though (check the instructions). You may want to try one pill one day and two pills the next day. That is one advantage of the gritty stuff - you can titrate exact amounts easily, especially with the powdered form that comes in a can with a scoop.
It is so funny how different we all are! You cannot stand the gritty stuff......it doesn't bother me. On the other hand, the Welchol pills seem gigantic to me. I would have trouble swallowing them, but you apparently have no problem. LOL.
Good luck, and keep us posted. I can honestly say that I am doing better now than I have in my 15 years of MC. And I have been able to add in many of my previously-sensitive foods, which is an unexpected bonus. I can now eat chocolate, hard cheeses, corn, beans, and many veggies/fruits (carrots, celery, white potato, tomato, avocado, strawberries, etc.) that I have had to avoid for years. I am guessing that removing the bile acids has lessened/stopped the constant gut inflammation.
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Polly wrote: I can honestly say that I am doing better now than I have in my 15 years of MC. And I have been able to add in many of my previously-sensitive foods, which is an unexpected bonus. I can now eat chocolate, hard cheeses, corn, beans, and many veggies/fruits (carrots, celery, white potato, tomato, avocado, strawberries, etc.) that I have had to avoid for years. I am guessing that removing the bile acids has lessened/stopped the constant gut inflammation.
Awesome!
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
So glad for you guys, Polly and Suze. The welchol has helped my BMs but sadly I'm starting to have side effects. I noticed it yesterday so I only took 1 last night as opposed to 3, but still woke up feeling weak, tired, and nauseated. Also felt shaky yesterday, possibly low blood sugar. I couldn't eat enough to get rid of feeling. My husband had to stay home with me. I'm going to talk to my Dr about the regular powder. I have always had trouble with side effects from meds.
Well just got off the phone with nurse, going to have to discontinue the welchol. Couldn't convince the nurse to see if Dr would prescribe the non-lite powder. Now going to have to get appt, she is booked a month away.
Just curious if the powder will cause me side effects, but the only way to know is to try. Feeling discouraged now....
Martha E.
Philippians 4:13
Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
Polly,
One of the things that prompted me to try the Welchol was the issue of what seemed like overactive motility. I was managing everything pretty well, but I kept having issues with visible undigested food. Since starting it, not a problem. Very interesting. I wonder whether I, too, will be able to re-try some foods that seemed to be particular culprits.
I will definitely try your suggestion of alternating 1/2 pills per day. Two a day just seems like too much for me. I also read with interest about the issue of how to juggle when to take the Welchol vs. other meds/supplements. B-12 is a big issue for me, and in the past I have had to have shots of it. Right now I seem to be holding it stable, no shots, but that was true before the Welchol.
My cholesterol has been running a bit high (but with very good HDL) the last year or two. If I continue to tolerate the Welchol, I'll be curious to see whether there's any lowering of the total number.
And Tex, forgot to mention, there was one post in which you posed a question about blood type. FWIW, mine is A Neg.
So sorry that you are having trouble tolerating the Welchol. I agree with your plan to try other sequestrant options.
Suze,
I have always suffered from increased motility. I think that has been a major factor for me. Will keep fingers crossed that you will be able to add in more foods. It is such a treat....but not nearly as much a treat as no longer having to worry about having an accident due to sudden, watery D. I feel FREE AT LAST. LOL. I am also interested to see what my next cholesterol blood test shows - it will be in Jan. '16. It will be fun to compare results! Let us know your progress in finding the right dose, since we seem to be pioneers here with regard to BAM.
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Well, add me to the Cholestyramine parade. I started Cholestyramine about a month ago. Regular version. At first, I was taking 1 pack every day just before dinner. BM's went to average 2-3x first thing in morning, but much more firm, and less urgency. A couple of weeks ago, I forgot to take it a few times, and realized that taking it every other day yielded same results as every day, so am now doing that. Weird, huh? Hoping I don't need to take more in time, to get this result. Maybe if I took 1.5+ packs each day, I would have something closer to Norman, but I'm not looking for perfection. It interferes with all supplements, so if I had to take with more than the 1 meal daily, would be difficult to get all supps in.
I am also starting Cholestyramine tonight, thanks to Tex guiding me to this thread. I talked to my gastro and he said yes, they were using it and having pretty good results with it and he wasn't at all worried about giving me a prescription, considering nothing else has helped. So, keep your fingers crossed for me. This is my last best hope!!!
Keep us posted on how it is working for you. I have been using it for 3 months and doing well, I take one scoop of the cholestyramine powder (Sandoz regular, not lite, powder) with breakfast and and one with dinner. At noon I take all my supplements so they are not bound up with the medication.
It has helped me immensely. I take one packet (equivalent to a scoop) of the Sandoz regular cholestyramine before bed, and it works like a dream. Try to get this if you can - people have had trouble tolerating the "lite" version as well as brands other than Sandoz).
Keep us posted!
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Ok am kind of worried before I even get started because my brand isn't sandoz! Going to give it a try. I would just about kill to be able to eat a salad again. Strange enough I miss a good mixed salad more than anything. I actually have dreams occasionally about eating salad and my body just craves it!!!
So, do you think it would be ok for any of us with MC to try Cholestyramine if we are still having loose stools or watery D? I have not had any testing done except for Enterolab and our vit d test from Grass Roots.
Thanks in advance.
I absolutely DO think anyone with MC and continuing symptoms should give it a try! No need to do a bile acid test (they are not readily available in the U.S. anyway). A trial of cholestyramine can't hurt. It is safe, and none of it is absorbed systemically. The only caution is to make sure you take any prescribed pills or supplements one hour before or at least 3-4 hours after taking cholestyramine, so that their absorption is not impaired. My GI doc (as well as others) are now using cholestryramine routinely in the treatment of MC.....and definitely before moving to Entocort. One study I saw showed that not one of the MC patients needed Entocort if the protocol followed the sequence of Imodium, dietary changes, Pepto Bismol, sulfasalazine/cholestyramine. Re dietary changes, my GI doc recommends the low FODMAPS diet, which is essentially what we recommend here - no grains, milk, legumes, etc.
Love,
Polly
JMulkey,
It's worth a try. If you do have problems with it you can always try the Sandoz. More people have trouble due to the "lite" version than from a different brand, I believe. When I mentioned adding foods, I was excited to be able to add in fiber again.....salads and other raw veggies, and even beans! I will not add in gluten ever again, however.
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
I agree with Polly of course that it's certainly worth a try, because it's such a low risk option, as long as one is careful about the absorption issue.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Awesome! 
