New Research/Common Diarrhea

[crohnsproof]

I follow the Science Daily (UK) and found with great interest and excitement an article disclosing the findings of a new research publication.

I'm relatively new around your forum and like many others here, I am ever alert to new studies, new treatments, and useful ways to improve my life with Crohn's.

On another thread I spoke of the bile acid diarrhea issue that I have. My last bowel surgery was 2 years ago and since then I have not had blockage or stricture pain. However, I am faced with a bile acid diarrhea(most of my life). I have a formula that has been successful with my body for years to hold down the diarrhea where I can maintain a fairly normal (for me anyway) life. I have taken Cholestyramine (Welchol, Questran) for years to reduce bile acid. I have always taken it at night because the bowel is lacking food to digest during that time and it reduces the amount of diarrhea I have in the mornings. It was a suggestion made years ago at CCFA.

Along with Previcid to reduce more acids (stomach) and calcium carbonate (absorbs extra acid and liquids in bowel) I have had a fairly good success rate. If I find myself having more diarrhea, I take every another scoope of Cholestryamine or calcium tablets.

If I add extra acids, such as sodas, citric acids, bottled teas with acids, or any acidic foods, it just adds to the complex problem of more is too much. So, I try to stay away from these things. To give you an idea, I can be having 4-5 soft stools a day, then drink a root beer for lunch and by morning I'll be back to the diarrhea. Once that is eliminated, I'm back to soft stool. (with my regimate)

Mayo Clinic and my current Gastroenterologist has always been interested in what I have to say about my condition, but they were all stumped. Now, with this new found study, there just may be a hormone deficiency to explain it all. Treatment could be developed in the future and we would even have a test to check our hormone levels to diagnose it.

The article futher states that "Bile acid diarrhea is a common condition, likely to affect more people than Crohn's disease or ulcerative colitis, yet until now we did not understand exactly what causes it."

My questions are, "To what effect has the bile acid diarrhea had on my bowel? Has it hightened the symptoms?"

I've posted the article at my blogsite.

CP

 

[NatalieMT]

Thankyou Crohnsproof, very interesting article.

I have just been prescribed Questran as the gastroenterologist I saw over the weekend thinks I may have a problem with bile salts also but on top of the Crohn's. What he said made a lot of sense. Apparently it could be causing the D partly and also irritating the bowel lining further, worsening the Crohn's symptoms.

Basically if the Questran works great we know it's a factor for me and I might get a little more relief before I hopefully start Infliximab.

 

[imisspopcorn]

I have the bile salts D as well. Thanks for the info CP. I hate Questran Blah....What have you found that makes it easier to drink???After years of prep, contrast, and barium I have a hard time drinking anything unnatural.

 

[crohnsproof]

You don't know how relieved that someone else in this world (that I can talk with), has this same condition. I've had this since I was 21 years old. It is more aggravating than anything else. When I was on Remicade & Humira the diarrhea never stopped. Before and after all bowel resections, the diarrhea never stopped. With tons of Prednisone, it never stopped. (this diarrhea isn't caused by inflammation of the bowel)

I was blessed to have a gastroenterologist in 1980 who listened to my request to try Questran, after I read about it in news letter from CCFA. (pre-computer days, can you believe it?) He actually thought I was nuts and asked, "Do you even know Doris, what this is used for?" And I came back with, "What will it hurt, it will just lower my cholestral.? The next day, after 1 dose, my diarrhea almost completely stopped. I was like a new person.

Some may not be aware that Questran was developed to reduce bile acid in heart patients, to lower their cholestral. Questran had to go through the regular period before a generic (Cholestyramine) was introduced. It hasn't been too long ago that the pill form came out. (Welchol). I have taken all three over the years. When I travel, I take the pills with me. (but there again, name brand makes it more expensive)
Here lately I've been back with the Cholestyramine. Because it seems to have a better effect on the diarrhea for me. I always drink a 3/4 C orange juice with 1 scoop of Cholestyramine. Then I head off to bed. You must also be aware that it hinders absorbtion, so you shouldn't take any other medication with it. The 1 hour before and 2 hours after rule.

With my regiment, I am able to have a fairly normal life, as explained in the first post.
I'm not saying that this is a cure all for diarrhea. I definitely have Crohn's disease and have had the perforated/ulcered/scarred bowel to prove it. But, I also believe that I am a victim of the 'Bile Acid' diarrhea. As long as I'm not in a Crohn's flare, I don't lose weight because of the diarrhea, since my absorbtion is good. My doctors have had me convinced that I just suffered from 'short bowel', lack of absorbtion. This was a good explaination, but it didn't ever fit in with the theory that the diarrhea stops when the bile acid stops.

I will step out on a limb and say that I would bet there are others that have this same thing as myself and don't realize it. They too, more than likely, have doctors blaming it all of the Crohn's. I hope I live to see the day when a hormone treatment and test for this deficiency comes out. That would be one trial study I would love to be a part of.

This also reveals to me why I never truly understood why all people with Crohn's couldn't just use the Questran & Calcium and stop their misery too.

I do apologize for the book here, but this really effects my life and probably thousands of others.

Regards,
CP

 

[imisspopcorn]

I am going to ask for the Welchol in Dec. when I see my GI. I only use the Questran for special occasions..ha ha. It kind of bothers my stomach after I first drink it. But, it does work. I had my gallbladder removed during my resection. I was vomiting tremendous amounts of bile due to my obstruction. I had a few stones. I probably didn't need it removed, but I was so paranoid that perhaps there really was something wrong with my gallbladder, I asked for it to be taken out just in case. I wish I would have waited now. New amazing break throughs are happening every day. They give me hope I know I can't live with out hope...Thank you again.

 

[pewpewlasers]

I think I saw something about this on some medical mysteries show.
It's very interesting.

 

[NatalieMT]

I picked up my Questran today. Going to start with it tomorrow! I have the 4g powder sachets In terms of dosage what do people find is a good balance and also when is the best time to take it? I know my gastroenterologist said something about having it an hour before meals, but I don't quite remember all the detaiks.

 

[DanSJVDavis]

I have a feeling I have this problem myself. But I just think my acid and bile salts don't get absorbed all that well due to not having a terminal ilium. I shouldn't have diarrhea that feels like I'm crapping hydrochloric acid. It even smells acrid. I get a lot of heartburn and whenever my heartburn is real bad I also have bowel problems and then the flaming acidic diarrhea.

 

[crohnsproof]

I don't want to advise anything against doctors orders. However, I usually take mine about an hour prior to bedtime. I don't take any other medications in the evening either. The Questran/Cholestyramine has an effect on other meds, that if taken directly after your meds it reduces their effectiveness.

If I'm drinking the powder, I mix it with a small glass (maybe 8oz) of orange juice. Stir it up really well, then I always add 3 or so ice cubes. This just helps to get it cold to drink it really fast. Don't think about it, just drink it.

The thing about this drug is that you can take it 3 times a day if you want. People with cholestrol problems usually are advised to take it with your meal. But that's because it slows down the absorbtion of cholestrol in the food.

I would definitely start slowly, with only 1 packet a day. You should notice a drastic reduction in the diarrhea. If you feel you need a little more, do it 2x a day. The number one side effect of this medication is 'constipation'. People taking for cholestrol, who have a normal gut, usually gets constipated.

But, I also HAVE to eliminate my cokes and acid fruits, etc. The orange juice I take the meds with doesn't effect me though. But, boy oh boy, if I drink a Dr. Pepper....the next morning I am back to square one until I poop it out. If I'm traveling, I never drink sodas.
Good luck.

Again, the reason I take it at night is because my diarrhea is worse in the mornings than any other time of day. While sleeping the gut is still putting out the bile and it doesn't have food to absorb. So it just sits there, building up, until I get up in the morning and put something in my mouth (water, food) that tells my gut, "Wake up boys, we're gonna dump!"

The combination of the Cholestyramine/Questran at night, and the Calcium Carbonate keep me in the soft stool mode, along with the Previcid in the morning. Then I'm able to get out and about without worrying about having a bowel accident. Plus, the odor is practically gone too. At least if I go into my friends bathroom, I don't get embarrassed about odor anymore!

All three of these meds work to reduce acid! Without the Previcid I really get the hearburn junk too. So Dan, I know exactly what you mean.

 

[pewpewlasers]

This has really made me think about when my stomach hurts and I have mostly bile d.
When I had my upper scope done the doc said that my sphincter was pretty much broken and was remaining open. I'm wondering that when I produce too much bile if it gets shot up into my stomach and causes the stabbing and burning feeling I get.
When I was prepping for my colonoscopy I had this pain again and a light went off in my head. Is it the over production of bile washing back into my stomach?
I'll have to bring this up next visit and see.
If that stuff can help; I am all for it.

 

[crohnsproof]

You guys are having me give my poop testimonial! These things have caused me to wonder for years.

I have stomach acid reflux. Hence heartburn. My husband has bile acid reflux. Bile acid backing into his stomach. Hence chronic belching, stomach and esophogas pain. I take Previcid, he takes Sucrafate, to coat the stomach.

Did Remicade stop my diarrhea completely, No. Did Humira stop my diarrhea completely, No.

My Crohn's has stayed pretty much the same way since 1980. I've had a blockage in 1990 and it came back with a fistula in 2000. During this entire time, I've been on Questran powder, to control the diarrhea. It stopped this year when I added the Calcium Carbonate.

Now, I still have to take Imuran (Aziathioprine) to help remission. I've been on it for a very long time too. I think 1990 or so.

I was nervous about the Remicade after my allergic reaction to it. The Humira came out, I tried it and got nervous about it after the side effects have been revealed about both.

Since I'm able to have a good quality of life without the high powered stuff, why not wait until I REALLY need it. I would rather remain with the Imuran and take my chances with lesser effects to worry about.

I have puzzled my medical community for years and years. They just don't know how I could eat pinto beans, corn, popcorn, whole wheat bread, and all that stuff. They have always advised me to keep on doing what I'm doing, that it's better to eat than not. But, don't think I didn't have trouble with these things with the stricture! I stayed away from all of it until I had my surgery. Now I eat anything I want, except that 'stupid' Dr Pepper. haha

I am sorry if I repeat myself on things and let me know if I don't explain very well.
I can not wait until I see my Gut Dr and tell him about the findings plus the calcium.
I see my bone dr Monday and will be reporting the Calcium findings too. He told me to stop taking the Calcium Citrate if it was making me sick. I asked about something else and he told me not to worry that my calcium level was actually good. Wait until I lay it on him that the Citrate has the magnesium that CAUSES the diarrhea.

A post thought: Is it the inflammation causing my diarrhea? Probably not if the Questran and Calcium takes it away. They are not for inflammation. Will I get a Crohn's flare and have some diarrhea? Yes, that has happened prior to my last surgery and that's pretty much how I know if it's a flare or not. If I'm doing my routine and I get diarrhea, I am usually feeling a little down. Or, I drank that STUPID Dr Pepper that I so love.

Good Day folks.

 

[braveheart]

I am currently using Bismuth Dioxide to reduce the acidity of the stools. Have you ever heared about Bismuth?

I found on the Internet that Cholestyramine also helps with Cholesterol?
Do you have hign levels of Cholesterol?

 

[crohnsproof]

Hello Braveheart. I am not familiar with Bismuth Dioxide. I do know what Bismuth subsalicylate is though, are they related? Bismuth Subsalicylate is sold as Pepto Bismol here in the U.S. It is a pink liquid, caplets, and tablet form. It is used for the treatment of heartburn, upset stomach, nausea, and diarrhea. It has a tendency to turn your stools black and if you take the liquid form, it will eventually turn your tongue black too.
The subsalicylate is aka aspirin. People using Pepto should be cautious if they have high blood pressure or aspirin allergies.

I have taken Pepto before and my ears would ring like crazy. My blood pressure shot sky high too. Could have also been because I was at the time taking Coumadin for a DBT clot in my leg and my blood was already thin, then I took the Pepto. (with a dumb doctors instructions to do so.)

I stopped taking it and got better. Went back to the Cholestyramine with good results. Plus, the stool form is more consistant with the cholestyramine.

I did have a poop accident one time on carpet, after taking the Pepto and it stained the carpet really bad (black) Ha. Never did get that out.

The Cholestyramine is for cholestrol. That was it's first primary designation. Then Crohn's/Colitis patients found out about it and the rest is history. You asked about my cholesterol. It stays about 115. I'm at a very low risk for heart disease otherwise.

 

[braveheart]

Crohnsproof,

The Bismuth Dioxide I take cames in a pink liquid form; It looks like being the local version of the Pepto Bismol you have in the US.

It constipates me sometimes, but I prefer constipation than the acidity on the stools.

Now I know it I am very entusiastic about Cholestyramine, I will try it and let you know. Here it is called Questran Light and each packet contains 4 grams of Cholestyramine's powder.

 

[crohnsproof]

I truly hope this works for you as well as it has me.

But, wouldn't it be a hoot to see the test and liver hormone treatment for diarrhea?
Because, all of my diarrhea is not Crohn's related. I just know it.

CP

 

[CrohnieCarolyn]

I have been taking Cholestyramine for years! After my surgery in 1998 to remove 18 inches of the ileum my doctor said I would have bile salt diareeha and this has saved my life! The very few times I have not taken it I suffer terribly - I take it about 15 or 20 mins before I eat anything substantial - dinner in my case - and this helps BIG TIME - now, if I am flaring - nothing helps with the diareeha so I KNOW it is bile salt diareeha -

 

[crohnsproof]

Thank you Carolyn for your testimony. Have you ever tried supplementing with Calcium Carbonate?
How many times a day are you taking the Cholestyramine?

CP

 

[themuse]

I tend to agree with crohnsproof. I believe my D is due to the Bile acid, because even when I was in remission if I didn't take the questran I would be running to the bathroom. i will try to supplement with the calcium carbonate...why not!