I need your help please.

[Catieu]

Hello again, Tex,

I’m really sorry you think I didn’t read your recommendation before asking my questions. It was the first thing I did after reading your message. I was even discussing with my husband how unbelievable it is that doctors don't consider any of what it says when they prescribe it. Maybe because of the language, which I’m not fluent in, some things weren’t clear to me. I’m really sorry to have bothered you.

Anyway, before going to bed, I thought I would go back and look for the chapter on BAM in your books.

A big hug.

Marta

[tex]

Hello Marta,

I apologize if I sounded upset. I didn't mean to give that impression. You're correct, there's definitely a language barrier here. The reason I wrote that article for the newsletter is so that I wouldn't have to keep repeating how to use cholestyramine to treat MC whenever someone else needed to use it. Another reason I wrote it is because most people try to use a substitute brand, and they don't experiment with the dose far enough to actually get it to work. They give up and then tell everyone that the treatment didn't work. That treatment is very effective for most of us who are unable to reach remission by diet changes alone.

And the reason doctors don't explain the correct way to use it is because it's not labeled to treat MC. It's labeled to treat issues associated with high cholesterol levels. Prescribing cholestyramine to treat MC is an off label use. So because of the language barrier, I'll try to answer your questions, although it's not likely that the information will be any easier to understand here than it is in the newsletter article.

To begin with, what dosage do you recommend?

As the newsletter article explains, you will have to experiment with the dose by increasing it every week or two until you find a dose that works well. And if you carry the experiment too far, and experience constipation or cramps, back up to the previous dose.

Can I take it all at once, or should I spread it out throughout the day as I did when I tried it before?

Do whatever works best for you, but spreading out the dose during the day usually works best.

The format we have here is a powder in suspension. Can I add more packets to the same amount of water, or do I also need to increase the amount of water?

I have no idea how much can be mixed into a glass of water. If some of it doesn't mix, you will obviously have to use more water.

Would taking it before bed be a good time?

Do whatever works best for you, but spreading it out during the day is probably going to work much better.

And will this treatment be for life, or will I be able to stop it at some point when I improve?

That depends on how your body responds to the treatment. Some people have been able to reduce the dose after a few months, and eventually stop using it, and some people have to use it indefinitely if they want to stop the diarrhea.

I hope this helps.

Tex

[Catieu]

Thank you so much again, Tex. I really appreciate it.
I already have the packets of Cholestyramine, and I’ve taken my first dose today.
I hope to give you good news in about fifteen days or more.
Today I feel hopeful. Thank you so, so much.
A big hug,
Marta

[tex]

Good. Please don't be discouraged if you're not better in a few weeks. Most of us who are in your situation have to do months of experimenting with the dose before we are able to find a dose that works well. We have to be patient, because each time we increase the dose, we have to allow at least 10 days to two weeks for our bodies to respond to the new dose.

Good luck with the treatment.

Tex

[Catieu]

Gracias, Tex. No me rendiré. Si tengo una virtud, es ser persistente y disciplinado.
Además, hoy es un buen día. Esta mañana, mis heces ya habían cambiado de textura. ¡No me lo podía creer! ¡¡¡Con sólo dos dosis!!! No quiero celebrarlo antes de tiempo, pero me ha dado un empujón de esperanza y ánimo después de tantos días sin ningún cambio.
Aunque no recordaba lo duro que me resultó probar la Colestiramina en el pasado. Todos los medicamentos que necesitan disolverse en agua suelen causarme molestias intestinales, náuseas y mucha hinchazón. Y esta vez no ha sido diferente. Pero aguantaré lo que haga falta.
Os mantendré a todos informados.
Muchas gracias por todo.
Un fuerte abrazo,
Marta

[tex]

De nada.

Tex

[Catieu]

Hi again,

I’m here to update you on my experience with Cholestyramine. After the first day with such good results, I decided to continue with two doses on the second day. If the first day already caused me discomfort when taking them, the second day was a total disaster. I had severe nausea, burping, a lot of pain, unbearable burning that made me think I’d end up bleeding from my mouth. I couldn’t sleep all night. The next morning, I couldn’t get out of bed. It was clear that taking Cholestyramine under these conditions wasn’t a viable treatment for me.

So, I spent two days recovering and started again, but this time with a mini dose. I bought a precision scale and for the past four days, I’ve been taking a quarter of a sachet (1 gram) two hours after eating. I tolerate it well and have been seeing encouraging results. My plan is to increase the dose by 1 gram each week. After the failure of the first attempt, I’m still hopeful with this second try.

Meanwhile, I have an appointment with a kinesiologist this afternoon. Many months ago, after realizing Enterolab’s tests weren’t an option for me, I booked an appointment. They have a long waiting list. I thought it could be an alternative to determine my food intolerances while I recover and can travel to the U.S. for proper testing. I know it’s not entirely reliable, but I figured when it comes to reintroducing foods, I’ll start with the ones he says are safe. So today is the day, and I’ll be seeing him this afternoon. I don’t think I’ll lose anything by trying. I know what I’m looking for from him, and I’m not planning to change anything I’m currently doing.

I’ll let you know how it goes.

A big hug.

Marta

[Catieu]

Hello again, everyone,

I've been thinking for a few days now that I need to write to you because things are not working.

The last time I wrote, I explained that I bought a precision scale and was taking 1g of cholestyramine a day, which I tolerated quite well. I did this for fifteen days. My stools weren't exactly normal, but they had a thicker texture. Then, I dared to increase to 2g. On the first day, I didn't tolerate it very well, but the second day was worse, with stronger side effects. I even vomited. I reduced it back to 1g a day, which was what I could tolerate. However, gradually, I stopped tolerating it well, and my stools also worsened again. Then I thought about switching brands of cholestyramine. Since I had an appointment with the doctor, I asked her for a new prescription. I also started with 1g, but from the first day, I didn't tolerate it well. Not with severe effects, but enough discomfort, and my stools weren't improving. Even so, I've continued taking 1g, but I haven't improved, and on the contrary, things have gotten worse in terms of both stool consistency and frequency, as well as general discomfort. I definitely believe cholestyramine is not for me.

I've been looking here in the forum for some alternatives to cholestyramine. I've seen that some people mention Colesevelam and Cortipol. Do you think they could help me? Would it be worth trying them?

If not, I don't know what else to do.

Since I also suffer from Hashimoto's Hypothyroidism, I get regular blood tests. Last week, I went to get one done. Both Vitamin D and total Magnesium are within normal ranges. Great!!!! But my Anti-TPO levels are through the roof (1972.19 UI/mL, while the normal lab value is 5.1 UI/mL). My cholesterol is also extremely high,good thing cholestyramine lowers it. I don’t understand, given my diet and how little I weigh. I also have low insulin and glucose, among other things out of range. My body is going crazy!!

Thank you so much for reading.

Big hugs,

Marta

[tex]

HockeyMom (Laine) is our expert on cholestyramine. To learn about various cholestyramine products, I suggest you read the posts in the following thread:

viewtopic.php?t=25490

But the main reason why nothing is working is probably because of your uncontrolled Hashimoto's Hypothyroidism. Hypothyroidism can interfere with digestion and multiply some of the problems caused by microscopic colitis. In other words, microscopic colitis prevents proper digestion and normal nutrient absorption, and when hypothyroidism is added to MC, controlling symptoms can become very difficult, if not impossible. The thyroid controls many critical functions of the body, and in my opinion, it's unlikely that anything is going to work correctly to control your MC, as long as your hypothyroidism is out of control. I am not a doctor, so you need to consult with your endocrinologist. The problem is, endocrinologists probably don't know anything about microscopic colitis, and gastroenterologist, don't know anything about Hashimoto's hypothyroidism. And getting your health back under control is going to require some coordinated treatment efforts.

Before you try the cholestyramine suggestions in the thread listed above, you need to get your thyroid working correctly, so please see your endocrinologist to get that resolved.

Tex

[Catieu]

Thank you so much, Tex. I’ll read the link you shared.

Regarding what you mentioned about hypothyroidism, do you think it’s out of control even though my TSH, T4, T3, and reverse T3 levels are normal? I’ve always had high antibodies, sometimes more, sometimes less, but the other values have been correct. Honestly, most of my hypothyroidism-related symptoms disappeared once I started the medication. Whenever my TSH gets out of balance, I notice it right away, but thankfully, that doesn’t happen often. I’ve managed to keep it well-controlled for a long time. Do you think the issue is because of the Anti-TPO levels??

This Monday, I have an appointment with my endocrinologist, and I’m going to bring all of this up. I’m not sure if there’s anything else we can do to lower the Anti-TPO apart from the medication. I think she believes I’m well-managed because the other parameters are within range.

Thank you so much.

Big hugs,

Marta

[tex]

As I've often pointed out, I'm not a doctor. But here's my opinion on what's going on with your situation:

If your TSH, T3, T4, Free T3, and Free T4 are all within their normal ranges, Then your thyroid is probably functioning correctly, but the anti-TPO level is definitely a problem. Here's why:

All anti-immune diseases are caused by chronic inflammation. And the reason they're caused by chronic inflammation is because chronic inflammation provokes the immune system to produce antibodies to fight a pathogen that does not exist. And since the immune system cannot eradicate a pathogen that does not exist, it continues to work harder and harder to eradicate the problem which pushes it to a state of ultra-sensitivity. An immune system in the state of ultra-sensitivity responds to virtually any kind of tiny provocation, and the body is always being exposed to multiple sources of tiny provocations. So regardless of how well your thyroid might be functioning, your body in general is still subject to the symptoms of extreme inflammation simply because your immune system is hyper inflamed. And as long as your immune system is hyper inflamed, an autoimmune disease, such as MC, is not going to respond to normal control measures.

The reason that the diet we recommend puts MC into remission, is because for most people, removing the inflammatory foods from the diet allows the immune system to settle back down to normal, which will allow the body inflammation level to settle down to normal. But when the immune system is producing antibodies at a high level for any reason (such as Hashimoto's hypothyroidism) the body's inflammation level remains high, and as long as the body is highly inflamed for any reason, autoimmune diseases (such as MC) are almost surely going to remain active.

And since Hashimoto's hypothyroidism is an autoimmune disease, this infers that even though test indicators such as TSH, T3, T4, etc. appear to be in their normal ranges, that does not mean that the thyroid is functioning completely normally. With a high anti-TPO level, the thyroid is functioning with a high level of inflammation. Since I'm not an endocrinologist, I have no idea what that may mean in the long term, but it couldn't be good. And in all honesty, I doubt that an endocrinologist would know what the long-term effects of a high TPO level would do, either, because these are uncharted waters. in other words, there is no medical research to provide guidelines for a situation such as this.

In my opinion, you're going to need some sort of medication in order to help suppress the inflammation before your MC will respond properly to your dietary treatment. In your original post, you say that you were treated with Beclomethasone and had to discontinue the treatment because it led to problems with cataracts. That's a somewhat common side effects risk of corticosteroids. But the safest corticosteroid that can be used to treat MC is probably Uceris. The second best choice is probably budesonide, because these corticosteroids have little to no systemic effects. They do not become active until they reach the colon. I'm wondering why your gastroenterologist has not prescribed either Uceris or budesonide in order to suppress the inflammation in your colon.

Tex

[Catieu]

Thank you very much for your extensive response Tex. I understand perfectly what you are explaining to me. This Monday I will talk to the doctor to see what we can do. I will let you know.

As for the Budesonide, I did try it many years ago when I was diagnosed. But it didn't work well for me, so they switched to Betaclomethasone which did work. Maybe I should try it again even though my gastroenterologist says corticosteroids are no longer a viable option for me. What do you think? My circumstances have changed, I have been on the diet and a lifestyle change for a long time.

Thank you very, very much

A big hug

Marta

[tex]

I can't help but wonder why your gastroenterologist believes that corticosteroids are no longer an option for you. Despite all the hype about all the new medications that are being used to treat IBDs, these days, corticosteroids (at least the ones designed to work like budesonide) are still the safest choice of effective medications for treating MC. Most of the so-called biologic medications that gastroenterologists prefer to prescribe to treat MC these days have relatively poor efficacy, and after several years most patients develop an allergy to them so that they have to be discontinued and replaced by another medication. There are various upcoming treatments under development, but most of them are at least 5 to 10 years away, and most of them will probably be so expensive that only wealthy individuals will be able to afford them.

Budesonide is not effective enough to overcome the inflammation for some people if they are reacting to gluten. Therefore, if you were using budesonide before you changed your diet to eliminate gluten, soy, and dairy products, there is a very good chance that it may work well for you now, as long as you continue to to avoid gluten and any of the foods that are a major problems for you. About 4 or 5% of us have such severe inflammation that we are unable to reach remission by using diet alone, and for those individuals (after they have been avoiding gluten for a long time), usually, they can begin a budesonide treatment (at full dose, to begin with) and then slowly taper the treatment down to one capsule (3 mg) per day, or one every other day, or one every third day, or even less often, and still maintain remission on that very low dose. We have a few members here who have been using budesonide that way (low dose) for 10 or 12 years, or longer, with no problems, and their MC is well-controlled. At such low doses, budesonide normally does not have any significant adverse side effects.

Tex

[Catieu]

Hello again,

Yesterday I had my appointment with the endocrinologist. She fully agrees that thyroid levels influence the colon and vice versa. She says it’s like a fish that eats its own tail. We have adjusted the medication and she has added some mushroom capsules that she says are used to lower antibodies and are showing very good results. Now, let’s hope I tolerate them well.

Additionally, after 15 days of treatment, she suggests adding a capsule of tryptophan. After a month, she says she would try Colesevelam, as the antibodies should have decreased by then, and there may be an opportunity for it to work, assuming I tolerate it well. She has already given me the prescription. What do you think? Does it seem like a good approach to you?

Thank you very much

A big hug

Marta

[tex]

That sounds like a good plan. It's good that she understands the problem and is willing to work with you to resolve it.

Thanks for the update, and good luck with the treatment.

Tex