Dear All,

I'm very new to this site, but a stroll along the previous topics have learned me quite a lot, for which I already thank all of you ! It has been enlightning to see my own worries and fears in many others as well.

I've had IBS-D since my late teens, most of the time rather mild with now and then increases in severity (typical...), but lately (months to few years) things have worsened, and can get cumbersome socially and professionally (o.a. teaching).
Although I can live with the occasional 'bad days', for me especially social dining is a heavy mental burden because of unpredictable and sudden heavy postprandial D-episodes.

Therefore, I was extremely hopeful when I read some of you are very well off with Colestid and with Calcium supplements for similar problems, togheter with the more 'conventional' bulk formers and probiotics. Can you tell me about the long-term effects of Calcium adn Colestid : how long do these help for you ? Do you experience side-effects ?

Secondly, I have read that new substances such as Croton lecheri (SP-303 or 'blood of the dragon' - derived from Amazon regions and recently published in Am J Gastroenterology) as acute anti-D agent, as well as the serotonin-antagonist Cilansetron (Solvay) phase III studies are new hopes (Lotronex would not work for me as I'm a male...).
Do any of you have experience with these ? Is there anyone in Europe who knows more about the centers involved in the Solvay studies ?

Any further help would be much appreciated !

Hi Beldoc, The only parts of your questions that I can answer to are the calcium and the colestid. As I understand calcium, your body only uses what you need and the rest is deposited in your waste. This helps soak up excess water and helps a lot of people. It can be taken forever with no side effects.

The colestid was originally a drug used to lower cholesterol. It works different to other durgs as it's not digested into your bloodstream. It goes through your digestive system and sits in your colon, waiting for excess bile to come by and attaches itself to the bile, making the stools firmer. The simple version is that it's a bile sponge. Colestid has to be taken one hour before OR 4 hours after any other medications as it will also bind to those medications and make them less effective. Colestid can also be taken forever. It lessens your intake of vitamin K so a good multi-vitamin is suggested. It can also cause gassyness in some people. That can go away as your body adjusts to it. The colestid is a very very good drug for constant diarrhea that you can't control any other way. In many people it will get rid of it altogether.

Good luck on your search for a helpful solution.

Hi, beldoc. I agree with Lindarella about the Colestid. After 20+ years of IBS-D with worsening symptoms in the last 5 or so years, I finally found out about Colestid on this site. I also did additional internet research about it (especially related to diarrhea), and took the information to my doc. Fortunately he was willing to work with me on diarrhea control and knew how much it was affecting my life. Like you, meals were a very scary proposition - would I have to make a run for it or be ok? If "D" set in, could I make it in time?, etc., etc. I'm sure you know the drill. By the time I got to a BR, which may only be a few feet away, I was sweating/shaking from anxiety. There were even times I had to leave work because I'd soiled myself. I wasn't even 40 years old at the time, and thought I'd end up wearing adult diapers. So when I tried Colestid, I wasn't too hopeful (I'd already been taking calcium twice daily and Metamucil) - but I was wrong. Colestid has given me my life back, and from everyone I've talked to - including docs - no side effects have been reported. The only concern from Colestid is constipation - not a concern for those of us with severe, chronic "D". Although Colestid is for high cholesterol, the dose needed to control diarrhea is actually less than what is normally taken to control cholesterol.

I do have to disagree with Lindarella about times of medication. You must take other medication either one hour before or 4 hours after Colestid, not the other way around. But you should consider taking a multivitamin daily since Colestid will deplete you of certain vitamins/minerals. I plan to take Colestid forever, and am so thankful for finding out about it.

Keep us posted on your progress,
Katie G

Dear Lindarella and Katie,

Thanks a lot for your advice and sharing your experiences which sound so familiar...
I've started on Questran today and will let you know how it works out. How long have you been taking it and should I take it only before dinner or multiple times a day ? Do you combine this with a food restriction (e.g. caffeine, alchohol etc...)
I'm combining the Questran with calcium supplements and possibly also will continue the Colofiber (=bulk former, something like Metamucil). I realize also that a number of stressors (e.g. new job promotion, the need to please...) need to be tackled in order to get 'my balance' back, so I try to work multifactorial :-)

I really look forward to good results with it, you have given me great hope, thanks for that.

[This message has been edited by Beldoc (edited 11-18-2002).]

Hi, again, Beldoc. In answer to your questions, my doc prescribed 2 Colestid (1 gram each) to be taken in the morning only. That controls my "D" for the entire day. I take my blood pressure medication first thing in the a.m. (about 6:30); wait for about 45-60 minutes, then I take my Colestid. I take a multivitamin and calcium pill at lunchtime; then another calcium pill at supper. I also eat 2 packages of Metamucil wafers daily to increase my usual fiber intake by 12 grams.

I'm really not restricting food/beverages since starting the Colestid. I know some people's D is aggrevated by coffee, but with the Colestid I don't have that problem now - nor with any type of food/liquid that used to set me off (basically anything; the act of eating was a trigger). The only thing I do restrict is that I don't eat anything until about 30 minutes after taking Colestid to allow it to get into my system and start working. I found out that if I ate too soon after taking it, the diarrhea returned.

This is what works for me; you may have to find your own personal system.

Good luck to you,
Katie G

Katie is right about the medication times. I got confused http://www.healthboards.com/ubb/biggrin.gif

The questran has to be in your digestive system to work so taking it right before your meals is too late. Most people take it either when they get up or when they go to bed or both. I'd suggest when you get up in the morning. Whichever you decide, take it at the same time every day.

Don't start off taking it multiple times a day. Start slow. Give it a week or so at just one dose and see how you do. If you find yourself constipated, cut the dose in half right away. The thing you want to avoid here is getting constipated or impacted. You can definatly over do it if you're not careful. I know it's hard to even imagine being constipated, just be careful. http://www.healthboards.com/ubb/smile.gif

I hope it is the miracle drug for you that it has been for others.

Dear All,

It has been over one month now that I have started to take cholestyramine (Questran) for my long-lasting IBS-D.
I started with low expectancy, but it has been a HUGE success so far ! Except for an occasional short period of low-abdominal pain in the first 2 weeks (maybe just the adaptation period), I have had NO complaints whatsoever... (keep my fingers crossed).

After a thorough literature search, I have discovered that the typical painless postprandial D is nowadays called the 'Habba syndrome' (always nice to have a name for it, isn't it) (Am J Gastroenterol 2000, Aug) and is related to gall-bladder dysfunction and/or bile acid reabsorption anomalies, which responds very well to resins.

At this Christmas day, I wish to thank all the helping people on this board, you have made 2002 extremely well ! Bless you.

Hi beldoc. I was so glad to read your post! Isn't Colestid (Questran in your case) WONDERFUL! I have been diarrhea free for about 10 months with only occasional flare-ups, which are tolerable and over soon.

What a great Christmas present to be rid of your suffering! I hope it continues on for you in the new year!

Happy New Year,
Katie G

Boy that's great news. I can't ever sing the praises of this stuff enough. It's nice to hear success stories.

Don't let it get you down if it doesn't work occasionally. Even people with perfectly normal bowels get diarrhea on average, 4 times a year. Four times a years sounds GREAT compared to 365 days doesn't it? http://www.healthboards.com/ubb/wave.gif

That sounds like an awesome solution!!! I will have to ask my Dr about it. There's not much meds I can take anymore because of my Lithium & I'm hoping these are on the "yes" list.