Colestipol

[Cat Granny]

Hello Guys I started a pretty significant flare back in early April. We were due to leave for a family vacation, so I caved and started taking budesonide. This was my second round on budesonide. It worked very quickly for me and was very effective. But I don't want to take it indefinitely as I was concerned about long term side effects.

My GI's office wanted me to start taking colestipol before I finished with the budesonide. So I started taking colestipol as I was finishing my budesonide taper.

It seems to be working quite well for me! I am honestly thinking it's too good to be true, and I keep looking over my shoulder! Since late August I've had mostly normal movements, and I haven't had any problems with the medication. I take three each evening before bed. I worked up to this dosage gradually over a week or so. It was several days before I noticed the full effect.

So I thought I would share my experience here with you all! If you haven't talked to your GI doc about bile malabsorption yet, please do so. This medication, as near as I can tell, causes no side effects unless you take too much and become constipated. You do need to watch your fat intake. There is a good FB group about BAM too.

I hope this information helps someone!

Nan

[ilsebb]

Thank you for sharing this! Do you have any current update? I am thinking of asking my GI to try it.

[tex]

Hi,

Welcome to the group. BAM is often the problem when careful diet control for long enough isn't bringing remission. The Microscopic Colitis Foundation published a newsletter that discusses the proper use of bile acid sequestrants for treating BAM, along with other possible treatment options for difficult cases, when the normal diet changes that we recommend don't bring remission. In case you haven't seen it, here's a direct link where you can either read or download a copy of that newsletter:

https://www.microscopiccolitisfoundatio ... mplate.pdf

Again, welcome aboard.

Tex

[ilsebb]

Thanks so much for the link to this article! It looks very helpful.

I have been working with an IBD dietician (LyfeMD in Canada) who prescribed a flare and low fodmap diet which I have followed for a few months now - essential foods include eggs, chicken, tuna, rice, potatoes, carrots, cucumber, tomato, strawberries, cantaloupe, banana (not too ripe), olive and avocado oil, almond milk and butter, broth made from chicken bones, low sodium salt. These are staples that I eat everyday. I have been gluten and dairy free since last November. I have tried pepto and budesonide for 8 weeks each with little to no improvement. The GI is tapering the budesonide (6mg currently) and recently added pentasa. But since seeing an article in one of your early newsletters I am wondering about BAM and will ask my GI. I have begun working with an ND who specializes in herbal medicine and has treated similar conditions successfully. I take 3000 IU vitamin D per day, and have not begun supplementing magnesium yet, but plan to start that soon.

I still have watery diarrhea every day despite the dietary and medical interventions, sometimes it won't stop and I take Imodium to get a break. I have lost 50 lbs since I started with this condition last July, and I'm 84 years old. I have read your books and am aware that some of the foods I am eating may be a part of the problem, but I'm afraid to limit my diet further and lose more weight. And the elimination diet is a tough pill to swallow! I'm thinking of doing the Enterolab testing to rule out issues in my diet that are interfering with my recovery . . . Basically, I have not yet found the secret to remission for me, and I have to keep trying and do the next right thing. I am so grateful for your work and commitment to help us. Any thoughts you have on my situation would be welcome.

Ilse

[tex]

Hi,

I can only guess, without EnteroLab results, but if budesonide is not even helping, your diet is probably way out of line. And while it's true that eliminating foods from your diet might cause you to lose weight, the continuing watery diarrhea will cause much worse weight loss and health deterioration, than eliminating any foods from your diet.

Some of us react to chicken, and tuna. Many of us react to the sugar alcohols, and all berries contain significant amounts of sugar alcohols. Melons are a problem for many of us, Most of us react to chicken eggs, and virtually all of us react to citric acid before we reach remission. Tomatoes are not a vegetable —they're a citrus fruit, and they're loaded with citric acid. And I wouldn't recommend cucumbers to anyone on an elimination diet, although they are not a serious threat, except maybe to a few.

You may be reacting to any, or all of these foods that I've mentioned. If I were in your situation, I would first eliminate the tomatoes. The strawberries probably aren't a major problem unless you're eating a lot of them. But I've been in remission for over 20 years, and if I eat more than a few grapes (which are loaded with sorbitol, a sugar alcohol) I have a session of diarrhea.

Turkey is a much safer choice than chicken, because virtually none of us reacts to turkey. But try to find turkey that doesn't contain rosemary extract, because rosemary is extracted using soy oil, and most of us react to soy. As I mentioned above, most of us are sensitive to chicken eggs. A few of those among us can eat duck eggs, but only a minor percentage of them. Many of us react to tuna, and other fish, so they're best avoided during recovery, and tested later, after we're in remission, before adding them back into our diet.

And if it turns out that you're sensitive to chicken, then bone broth made from chicken bones is surely also causing you to react.

Safe meats for us include turkey, lamb, venison, duck, goose, rabbit, quail, pheasant, antelope, and other wild type foods, whether actually wild, Or raised on a farm or ranch. It's obvious that, like virtually every dietitian in the world, your dietitian definitely does not know how to advise MC patients, regarding their diet. They're not trained to treat MC. Their training targets "IBD" patients (which most of the world interprets as Crohn's and ulcerative colitis patients), and it definitely does not apply for advising MC patients.

That's not to say that BAM couldn't be an issue for you, but I would try these diet changes first, since your diet is in question. Eliminating (or making safe substitutions) a few of the foods in your diet may well resolve your problem. If that doesn't work, EnteroLab test results would definitely answer the questions about what's safe and what's not.

I hope this helps,

Tex

[jbrohlr]

Hello Ilse,

I have a very limited diet - lamb, pork, turkey (if I can find it without preservatives) sweet potatoes and water. I have pistachios occasionally, now that I can get them salt free. I have been on this diet for roughly three years.

Volume-wise, I eat as much as my digestive system can handle in a day. There is, no doubt other foods that I can eat but I want to keep my diet as simple as possible; that and I am tired of experimenting with diarrhea. As Tex said, the weight loss is from the diarrhea, not from a limited variety in your diet.

Enterolabs can be very helpful.

John R.

[Cat Granny]

Hello!

I didn't realize my post had been commented on!

At this moment I am not on any medication for my CC. I have what I describe as loose stools about once a day. If I need to go out, I may take an imodium or half an imodium.

I actually met with my PA from the GI clinic earlier this week. She advised me about OTC meds, and said I could have refills on prescription meds if I need them. For now I am okay with what is going on. If the loose stools get too loose, I will go back on colestipol.

If I need to travel - like a long car drive or a plane ride, then I would take a shorten course of budesonide. I did this last fall when my DH and I went on a cruise.

I think a lot of the work for this disease is mental. You have to manage your expectations and adjust. I'm not happy I have it, but right now it is manageable and I grateful.

However, I seem to always flare in the spring. Come next March we will see.

Hope everyone is doing okay!

Nan

[tex]

Nan,

This may sound strange, but the fact that every spring brings a flare, suggests to me that you might possibly be having histamine issues (If high pollen levels trigger a flare). Have you tried taking a daily antihistamine? I wouldn't bet the ranch on this possibility, but there's a chance that a daily antihistamine might resolve your loose stool issues. I have histamine issues that are resolved by taking a 24 hour antihistamine tablet first thing every morning. Before I discovered that trick, I had histamine problems every day, despite avoiding high histamine foods and taking a DAO supplement. At any rate, trying that for a day or so shouldn't cause any problems, And if it works, you should see results by the second day, at least. There are no known health risks associated with taking an antihistamine daily.

If it doesn't work, I apologize for making a wild guess.

Tex

[Cat Granny]

That is so kind of you Tex, to suggest a antihistamine! I had thought the same thing myself. And when I am flaring and pondering the tile on my bathroom floor, I am also blowing my nose like crazy!

I told the PA all these things this past week. She said other patients have told her this as well, but they didn't think seasonal changes had anything to do with CC flares. I also told her I have periods when I wake up and feel like I have a brick in my stomach. These episodes always end with me on the toilet, expelling from both ends. And she said these are vagus nerve reactions. Hmm. I don't know anything about my vagus nerve but I will research this more.

I don't think my PA knows anything more than she did last time I saw her. This was about two years ago.

I take a generic zyrtec each morning. If I don't I'll be sneezing quite a bit during the day. This is a 24 hour formula. Maybe I should add in another, shorter acting antihistamine in the springtime, before bed? I now know better than to schedule anything big in late February and all of March.

My PA did say they are seeing MC more frequently, in younger people, and many of them don't respond to any treatment. I'm grateful the imodium usually gives me a few hours of peace.

[tex]

I'll send you some information about how histamine (and histamine sensitivity) can affect the vagus nerve.

Tex

Note: I sent it by email. If you don't receive the email, or can't open the attachment, please let me know, and I'll just add the information to a post.

[Cat Granny]

Thank you again Wayne! I have experienced nearly everything referenced on your attachment! Goodness.

It would certainly explain my seasonal flares. The spring flare is usually pretty bad, but I also get milder flares in the fall when it finally starts cooling down.

I need to research and see if I can do anything to help lessen the severity of these flares. I'm in 'normal' mode right now, which is of course loose stools. I decided to start taking colestipol again last night.

[tex]

The article that's scheduled to be posted to my blog on the Microscopic Colitis Foundation Website In five days, discusses mast cell and MCAS issues, and distinguishing between them. I'll email that article to you so that you don't have to wait for it to be posted on the site.

Tex

Note: if you don't receive it, or can open it, please let me know and I'll try another way.

[ilsebb]

Hi,

I can only guess, without EnteroLab results, but if budesonide is not even helping, your diet is probably way out of line. And while it's true that eliminating foods from your diet might cause you to lose weight, the continuing watery diarrhea will cause much worse weight loss and health deterioration, than eliminating any foods from your diet.

Some of us react to chicken, and tuna. Many of us react to the sugar alcohols, and all berries contain significant amounts of sugar alcohols. Melons are a problem for many of us, Most of us react to chicken eggs, and virtually all of us react to citric acid before we reach remission. Tomatoes are not a vegetable —they're a citrus fruit, and they're loaded with citric acid. And I wouldn't recommend cucumbers to anyone on an elimination diet, although they are not a serious threat, except maybe to a few.

You may be reacting to any, or all of these foods that I've mentioned. If I were in your situation, I would first eliminate the tomatoes. The strawberries probably aren't a major problem unless you're eating a lot of them. But I've been in remission for over 20 years, and if I eat more than a few grapes (which are loaded with sorbitol, a sugar alcohol) I have a session of diarrhea.

Turkey is a much safer choice than chicken, because virtually none of us reacts to turkey. But try to find turkey that doesn't contain rosemary extract, because rosemary is extracted using soy oil, and most of us react to soy. As I mentioned above, most of us are sensitive to chicken eggs. A few of those among us can eat duck eggs, but only a minor percentage of them. Many of us react to tuna, and other fish, so they're best avoided during recovery, and tested later, after we're in remission, before adding them back into our diet.

And if it turns out that you're sensitive to chicken, then bone broth made from chicken bones is surely also causing you to react.

Safe meats for us include turkey, lamb, venison, duck, goose, rabbit, quail, pheasant, antelope, and other wild type foods, whether actually wild, Or raised on a farm or ranch. It's obvious that, like virtually every dietitian in the world, your dietitian definitely does not know how to advise MC patients, regarding their diet. They're not trained to treat MC. Their training targets "IBD" patients (which most of the world interprets as Crohn's and ulcerative colitis patients), and it definitely does not apply for advising MC patients.

That's not to say that BAM couldn't be an issue for you, but I would try these diet changes first, since your diet is in question. Eliminating (or making safe substitutions) a few of the foods in your diet may well resolve your problem. If that doesn't work, EnteroLab test results would definitely answer the questions about what's safe and what's not.

I hope this helps,

Tex

Thanks, Tex, for taking the time to consider my situation. I seem to have achieved a break from the WD for almost two weeks now. I started budesonide about 3 months ago, and Pentasa was added 1 month ago. This is my second treatment with these two drugs, the first being last November. I have not eaten gluten and dairy since then (8 months). If I do Enterolab testing at this point will the meds interfere with accuracy of results? Will I need to eat some dairy beforehand?

My next appt with the GI is July 31, and I am wondering if you have any recommendations for how to proceed with next steps with these drugs. I will have been at a dose of 6mg Entocourt and 4g Pentasa for 6 weeks. I know from reading here and in your books that GI's don't always proceed in the best way and I want to be prepared. I've seen the recommendation for budesonide. Is there one for pentasa as well that you can share?

Thanks again for your help.

Ilse

[tex]

Budesonide shouldn't affect EnteroLab results unless you have been using it for over a year, and as far as I'm aware, Mesalamine (Pentasa) has no effect on immune system suppression. EnteroLab recommends continuing to eat whatever you're eating before the test, so you should be good to go.

If you're improving, I hate to rock the boat by recommending any changes at this point. Lets wait to see how your GI visit turns out. By then, things will probably either be better or worse.

Tex

[Cat Granny]

Hello

I wanted to update my post regarding colestipol. I had said earlier that I was having "loose" movements, and would start the colestipol again if they got too "loose".

Of course they became too loose. I mean, what was I thinking??? So for the past two weeks I have been taking colestipol before my bedtime. I started out with two tablets. Then three. For now I am taking four tablets a night. My movements seem to have finally consolidated into one or two in the morning, with possibly another one later.

Four tabs a night seems to be the spot for right now. My gurgles have stopped, and other than some impressive gas, I think I am doing okay. I hope everyone can find a solution for themselves.

Nan