I have been taking Colestid 120s 100mg since about a month after my gallbladder surgery in May 2003. It has been working wonderfully. I no longer have to run to the bathroom 20 times a day. But over the last few weeks, about 5 or 10 minutes after eating breakfast I have to RUN to the bathroom and I have bad diahrrea. The usual dosage is 2-4 pills. I take 3. I take the Colestid usually about 5 minutes before I eat in the morning. Is that enough time?

What is going on with me?

Thanks,
Elyse :wave:

Hey Elyse so glad the Colestid seems to be working for you. I've never heard of Colestid 120s - each one of my pills is 1 gram and I take 2 every a.m. I found out the hard way that I must take them at least 20-30 minutes before I'm going to eat anything or I'm the same way as you are. I'm ok with a cup of coffee in the a.m. before I take them (usually!), but I found out that if I don't allow at least 20 mintues for them to be in my stomach, I will be running to the bathroom after I eat.

Continued success to you!

Katie G

Thank you Katie. :) I hope you are well too.

The Colestid has really worked wonders for me. I CAN EAT AGAIN! But nothing is perfect. Some mornings I still have a problem.

My prescription bottle says "Colestid 1 gram tablets 120's" I haven't got a clue what the 120 means.

They are huge, oblong, yellow tablets and one side has the letter "U" on it. Is that what yours look like?

Anyway, I have realized that as long as I don't eat a big breakfast I am OK. When I go to work, I usually just grab a Milk N' Cereal bar (cinnamon toast crunch, cocoa puffs, etc....) and a cup of tea in a travel mug on my way out the door. But since I am a substitute teacher there are days when I don't work. So I take that opportunity to have a better breakfast. I'll have waffles or pancakes (frozen ones) or a bagel or occasionally some eggs. I don't usually have a problem when I take the Colestid and eat the cereal bar 5 minutes later. But when I have a normal breakfast, I better be near a toilet. It usually only happens once in the morning and then I am fine to eat for the rest of the day. So I am thinking that you are right, it must have something to do with the amount of time I am giving myself between taking the pills and eating.

It's such a pain though because they tell you that if you have to take any other medicine, it has to be taken either 1 hour before, or 4 hours after taking the Colestid. Otherwise the Colestid will absorb the medicine. Normally I take all of my other medicines at bedtime. But now I have a new medicine that I take for my fatigue (from my Multiple Sclerosis that was diagnosed in december) and that needs to be taken in the morning too. So my dilemma is that I need to take that 1 hour before I take my Colestid. So I get up, take my fatigue medicine and wait an hour. By that time I'm starving. So I take the Colestid and eat. Or on a morning when I am really in a rush (like if I oversleep) I take the Colestid first and then wait 4 hours to take the other medicine. But that's not goot because then I'm falling asleep for the first 4 hours of my day. Does anybody else have this sort of dilemma?

Do you think it is a good idea to take 3 Colestid on the mornings when I am only eating the cereal bar, and take 4 on the mornings when I am going to have a bigger breakfast?

Also, I find that if I wake up late (I'm so tired that on my days off I sleep until 12!) I don't have as much of a problem with the diahrrea. All through my life I have always found that no matter what I eat, if I eat really early in the morning I run the risk of at the very least having a stomach ache, and at the worst, possibly being on the toilet for an hour!

But I'm just grateful that it doesn't happen after every meal anymore!

Hope everyone is well,
Elyse

Hi again Elyse. I'm so sorry to hear that you have been diagnosed with MS. I hope that you can fight it and live a close to normal life; I know some who don't even seem that sick from it, and can function very well. As far as the Colestid, mine look just like yours. Some days they almost choke me because they're so big.

I still have occasional "breakthrough" diarrhea myself whether I've eaten too soon after taking them or not, but at least I can get to the toilet in time. Used to be I couldn't hold it back at all until I started the Colestid. However, most of the time (at least 90%), my stools are formed and sometimes very large.

You're right about timing the medication too. I have to take blood pressure medication, so I take that first thing in the a.m. (around 6:00 a.m.); and then Colestid around 7:00 a.m. I'm not real good about eating breakfast until at least 9:00 a.m., so letting enough time go by is not really an issue. Sometimes if I sleep in (like the occasional weekend), I'll only let 1/2 hour go by between my BP med and Colestid just so I can eat something before noon.

Please check with your doctor before changing the dose of your Colestid. I only take 2 every a.m. and have been that way since I started a year and a half ago. I'm not sure about taking 3 one day, and then 4 another; only your doctor could answer that question.

So good to see you on the boards again. I'm doing ok overall - at least with my digestive tract. Unfortunately, I'm now going through long-term treatment for my TMJ disorder which has been causing chronic headaches, neck and back pain. I've been posting a lot on the TMJ boards to others - it's so good to have people who share your experiences to talk to.

Hang in there and keep me posted on how you're doing,
Katie G

Katie, thanks so much for your support and concern. It means a lot. I seem to be doing OK for the moment with the MS. I go to local doctors here in Staten Island for my other health problems, but there was nobody good here who specializes in MS. So now I see an MS specialist at NYU Medical Center/Hospital For Joint Disease in Manhattan (which is the doctor capital of the world!). He thinks we caught it early enough that I shouldn't really have many problems from it. I started on the interferon injections very soon after the diagnosis, and they're supposed to slow down the disease process tremendously. I'm sorry to hear about your continued TMJ problems. They thought I had it when I was a kid. Sometimes my jaw does crack, but it's nothing I can't live with. My mom used to have to sleep with a bite plate. Actually, I think my symptoms started to clear up when I started sleeping with a retainer in my mouth (got my braces removed when I was 13) that resembles a clear plastic mouth guard.

I hope your current treatment works well for you. It's always something, isn't it?

I've actually been on the boards pretty regularly, posting on the Eye & Vision board and sometimes the MS board. I just haven't had the need to come back to the digestive disorders board until now!

I actuallly have to make an appointment to see my GI specialist. I saw him in January and he told me to come back in 3 months but I didn't make an appointment. I better call him. Maybe I'll go in sooner.

You see, I thought I had a theory that if I slept late then I could eat and not have the diahrrea. Well, throw that one out the window. Yesterday I slept until 12, took my other medicine first and took the Colestid and hour later, waited about 20 minutes or so to eat, and almost didn't make it to the bathroom. Saturday I woke up around 11, and was going to a surprise party lunch, so I didn't have breakfast. I took the Colestid an hour after taking my other medicine as usual, then waited 1/2 hour to eat. I was OK when I was only eating cookies, but when they brought out the actual lunch food and I ate that, I was done for. I had to leave anyway, and I only live about 5 mintues from where the party was. Sorry for being so graphic, but it was coming out of me as I sat down on the toilet at my house. (I generally do not like to do that in other people's homes if I can help it.) There just seems to be no rhyme or reason as to why this is happening again. I was doing so well for such a long time. Now I'm getting worse again. I think I'm going to start keeping a log of what I eat in the morning and how long I wait to eat after taking the Colestid. I'll write down how I felt after eating, that way maybe I can try to see if there is some kind of pattern. I love to eat bagels for breakfast, and today I got excited because I am going to be subbing at a school that is right down the block from Dunkin Donuts (and they have such good bagel sandwiches) and I was thinking about getting breakfast there tomorrow. Then I remembered that if I do, I won't be anywhere near a toilet! The only time I really seem to be OK is when I just eat something very small for breakfast, like a cereal bar. But that is very hard when I am teaching and won't be able to have a snack in the morning before lunch.

Then I thought that it only happened when I drank chocolate milk with breakfast. So, I stopped drinking chocolate milk. (I began having water or decaf iced tea with my breakfast!) But no, regardless of whether or not I have milk, I still have to go to the bathroom. Then I tried cutting out butter. Nope. I tried all these dietary changes and still no success. I am afraid I have to call my doctor again. :(

Gosh Elyse, that's too bad that you're still having episodes of diarrhea. Mine are infrequent enough I don't have to usually worry where the nearest bathroom is. However, due to my IBS I can have the sudden (and I mean right now!) urge to go, but can hold it if it's solid. However, like you if it's the big "D" it will be coming out before my butt even hits the seat. So unfortunatley, you may be dealing with IBS on top of everything else.

Sounds like a good idea to go back to see your GI doctor. Let me know how it goes.

You're right - it's always something. Today I'm in a real bad "flare" with my fibromyalgia. Significant right shoulder & neck pain radiating up through my head. I really hate sitting at this computer right now because the pain is just constant. My a.m. dose of Flexiril has done nothing to get the pain under control. If I take any more right now, I'll be snoozing at my desk soon.

I'm so glad for these boards to vent; no one else really understands pain and suffering like a person going through the same experience.

Thanks for your support and hope to hear from you again soon.

Katie G

Katie, I'm sorry to hear that you are not feeling well. You are too nice to have all of these problems. :)

I made an appointment to see my GI doctor a week from friday. I actually felt fine today, but ya never know what I'll feel like tomorrow. It makes being a teacher difficult. It's not like I can just run to the bathroom! I actually do have IBS, but it has been pretty good for a while. Maybe that's why I don't feel good again. Oh well, I'll let my doctor figure it out.

Feel better!

Elyse

Hi Elyse. Thanks for your kind words; I'm a little better today. Just have to kind of take it easy (no weight training when I'm in a flare; maybe some walking only), but the pain is less today than yesterday, so that's a good sign I'll be pretty much better by the weekend. Please keep me posted on your doctor visit.

Take care,
Katie G

Well, my GI doctor thinks that my recent diahrrea is from the Provigil that I am taking from the weakness and fatigue I get associated with my Multiple Sclerosis. He looked it up in his little palm pilot PDR and it does say that one of the side effects is diahrrea. Of course I would have to get this side effect. I'm not going to stop taking it, but he told me to try taking Culturelle and see if that helps. Maybe the Provigil is throwing the Ph in my GI tract off balance. Sigh, it's always something, isn't it?

Well, my GI doctor thinks that my recent diahrrea is from the Provigil that I am taking from the weakness and fatigue I get associated with my Multiple Sclerosis. He looked it up in his little palm pilot PDR and it does say that one of the side effects is diahrrea. Of course I would have to get this side effect. I'm not going to stop taking it, but he told me to try taking Culturelle and see if that helps. Maybe the Provigil is throwing the Ph in my GI tract off balance. Sigh, it's always something, isn't it?


You're right - it's always something. I'm pretty much status quo right now (some mild/moderate pain, but dealing with it).

Keep me posted - I'll keep you in my thoughts/prayers.

Katie

Dear friends,

I know a lot of these postings about colestid are old, but please be careful of this drug. On the drugmakers own web site, as well as FDA and others, Colestid was known to cause cancer in rodents immediatly. The FDA still approved this drug, I guess due to the almighty dollar. My father had slightly elevated cholesterol, although he was generally healthy @ 62. He was prscribed colestid and the next day he came down with pneumonia like symptoms. He was misdiagnosed over the next 2 weeks with liver cancer, stomach cancer, leukemia, and so forth. The Dr.s were puzzled. He had a team of 11 specialist in one of the best hospitals in the nation. He was dead less than 3 weeks after beginning this medication. He was finally "diagnosed" 3 days after his death as a rare form of leukemia. It was not until my sister started researching that we found out about this poison. There will be a class action lawsuit in the near future against these murders and shame on the FDA for allowing this to happen. They even had a vote on it. My parents were married for 39 wonderful years. He will have been passed away for 3 years on May 5, 2004. We miss him dearly.

JC

Hi JC,

My heart goes out to you - I'm so sorry for the loss of your father related to Colestid. Can you tell me the sites you found your information on? After reading your post last week, I couldn't find anything related to serious side effects of Colestid. I have only seen that it can cause severe constipation or bowel obstruction in people sensitive to that condition. I appreciate your candor/concern related to Colestid. I just hope I never have to stop taking it - I was suicidal and almost couldn't leave the house because of my severe chronic and uncontrollable diarrhea. It has given me my life back, and I'm not exaggerating.

Take care,
Katie G

Katie,
I just wanted you to know I just recieved your e-mail. I am glad Colestid is working out for you. My in-laws are in town and when I have more time, I'll let you know where we found this information. Usually in the bad cases, it hits immediatly.

Write back soon! Happy Easter.

JC

Thanks Julie. I'm looking forward to hearing back from you when you have time. I hope you had a good Easter!

Katie G

Sorry I haven't had a chance to reply to this earlier. I too am very sorry for the loss of your father.

I'm a bit confused though. Was your father prescribed the Colestid for his high Cholesterol? I have never heard of it used for that. I also looked online and tried to find something about Colestid causing Cancer and couldn't find anything about it. It must be a very rare side effect. I appreciate your warning though. :) I've been taking it for a long time and do not have any problems from it.

We actually did figure out what my increased Diahrrea is from. I was prescribed a medication by my neurologist called Provigil. It's for the debilitating fatigue I get associated with my Multiple Sclerosis. I told my primary care doctor about it (he's also my GI specialist) and he looked up Provigil in his PDA. (not PDR. He's got a little hand held computer that he looks up drugs on.) Wouldn't you know that one of the side effects of Provigil is that it causes diahrrea? :rolleyes: Of course.

I hope you are all doing well and had a very happy holiday.

Elyse

Hello ladies. Sorry it has taken so long to write. Elyse asked if Colestid was prescribed for high cholesterol, and it was. Two years ago, on the upjohn site, I swear to you that one of the warnings was that colestid caused cancer in some rodents immediately. When I went back to find this information, I was directed to the Pfizer web site and of course, it says nothing about the rodent thing. Did Pfizer buy Upjohn? Anyhow, as I said earlier, my Fathers choles. level was slightly elevated, and yes, I guess they use these drugs for bowel problems etc.... also. Interesting. Anyhow, in the Journal of American Medical Aassociation there is an article, there are several, callled the carcinogenicity of lipid lowering drugs. I have also read that when cancer does happen with this drug, it happens immediatly. I guess all drugs have problems, but when it hits home, it becomes real personal!!!!!!! I wish you all luck, although I am still baffled how something that can lower choles. can also curb diarehea (sp?)!!!!!!!! good luck to all.

JC

i Julie. Good to hear from you again. Thanks for the info - I'll be sure to check that out.

The reason Colestid works for bile salt diarrhea so well, is that after gall bladder removal, the liver dumps bile directly into the stomach and small intestine which can act like a laxative for those of us unfortunate ones, thereby causing the severe uncontrollable diarrhea. Colestid is a bile acid sequestrant and sits in the stomach to soak up the bile from the liver, just like a sponge, thereby reducing the laxative effect. I only need to take 2 Colestid each a.m. to achieve this effect - someone with high cholesterol may need to take many more pills than that per day to control cholesterol levels. From what I've read, it's not absorbed into the bloodstream like the statin drugs, e.g. Lipitor. It progresses through the digestive tract absorbing excess bile. For some people taking the high doses for cholesterol control, Colestid can cause significant constipation. But for those of us with bile salt diarrhea, it can help us achieve bowel control.

My life was a living h*** after GB removal and before Colestid. I'm just so glad to have found out about it, and have success with it.

I like to be well-informed about the medications I take, and I did not impulsively enter into taking Colestid. I did as much background checking on it as I could find. All I can say is, the change from severe uncontrollable diarrhea after every meal to normal formed stools was remarkable!

Katie G

All I can say is, the change from severe uncontrollable diarrhea after every meal to normal formed stools was remarkable!



Yeah, it was unbelievable! I thought I would never be able to eat again, and my doctor prescribed Colestid and it was like a miracle!

I am going to ask him about it causing cancer at my next appointment. I also want to know if I'll have to be on it forever.