I need your help please.

[Catieu]

That's great, Tex!!!! I'm so glad you think it's a good plan. It's very important to me.

I'll give you a break for a month hehehe and update you on how I'm doing. I hope I can come back with good news. it's about time!!!!!

Thank you so much

A big hug
Marta

[Catieu]

Hello again,

I'm here with an update on my condition and I have a question for you.

I'm feeling somewhat better, although I'm still not in control of the diarrhea, but I have more energy. I assume that adjusting my thyroid medication has helped. The mushroom capsules I've been taking have changed the texture of my stools; they’re still loose but thicker. Initially, I tolerated them well, but gradually they’ve started to make me feel worse. I'll speak to my doctor to see if I can reduce the dose or take them every other day. Thankfully, the tryptophan hasn’t caused me any adverse effects.

This week, I’m supposed to start taking Colesevelam. Here’s my question: What dosage regimen should I follow? Should it be the same as with Cholestyramine?

I really hope this works for me. I’ll keep my fingers crossed as I start taking it.

Thank you so much.

A big hug
Marta

[tex]

I don't know how to answer your question, because we determine the proper dose of cholestyramine by increasing the dose every couple of weeks until we find a dose that's effective, yet not constipating.This usually works if we tolerate the cholestyramine well. If we don't tolerate a drug well, then the treatment won't work, regardless of the dose.

Tex

[Catieu]

Hi Tex,

I think the translator messed up again.

I wasn't referring to the medication dosage, but rather whether it also needs to be taken away from meals (4-6 hours before or 1-2 hours after). I assume it does, since it’s still a bile acid sequestrant.

I’ve tried searching through previous threads, but I couldn't find the specific info. However, I noticed that Suzieq mentioned in this thread that she takes it before going to bed. So I’ll follow her example, starting with the minimum dose for ten days and gradually increasing it until I see the desired effect, assuming I tolerate it well.

Thank you so much!

[tex]

Yes, any bile acid sequestrant should be taken several hours apart from meals unless you're trying to lower your cholesterol level. It shouldn't cause any major problems if taken too close to meals, except that it Will also tend to sequester fat-soluble vitamins (vitamins A, D, E, and K) and folic acid, and most of us don't need to lose any more vitamins.

Tex

[Catieu]

Hello again, everyone,

I'm back to update my situation and seek some advice.

I started taking Colesevelam, one pill before bedtime as Suzieq suggested. I stayed at this dose for three weeks. During the first two weeks, the change was remarkable: my stools became soft but thicker, and there were even days when they were small or medium pieces. Also, the urgency disappeared. It was very promising, which is why I stuck with the same dose for a few more days.

However, during the last week, things progressively got worse. So, I decided to increase the dose to two pills on alternate days. I've been on this adjusted dose for more than a week now, but I still haven't seen any improvement.

I can't understand what’s happening. Thinking back, something similar happened with Cholestyramine: at first, it seemed to work, but then it progressively stopped, even as I increased the dose. I eventually stopped taking it because the side effects became unbearable.

Has anyone experienced something similar? I'm unsure what to do: should I keep increasing the dose? Or is it better to stop taking it altogether?

Thank you so much for reading.
Warm regards,
Marta

[tex]

Marta,

There might be a problem with one of the Inactive ingredients in the medication you're using. The bile acid sequestrant expert here is HockeyMom. She doesn't check in very often anymore, so if she doesn't notice your post and respond in a day or so, I would suggest you send her a private message, because she's always happy to help anyone who is having problems with medications in this category.

Tex

[Catieu]

Thank you very much Tex, I will do so.
A big hug
Marta

[HockeyMom]

Hello People-

I did a personal message to Marta but I wanted to just post this anyway. Yes, Tex....I don't check in often anymore because life is good! But life is good because of this page

I HAVE to take Epic cholestyramine. No other brand has worked for me and fortunately Epic is a generic (brand name is Questran)-so my insurance is happy to pay for it. I know sometimes it's an issue finding it.... but it's still being manufactured as of my last 3 month refill! My life would be so much easier if I could just take it in pill form-when you take as much of it as I do, traveling is a pain (because of course it has to come carry on with me because it HAS TO GET there!!!). I'm not sure what to tell people who have side effects like nausea/vomiting. I didn't/don't have this problem. I do remember ALOT of bloating and very weird poop initially. If you can live with the side effects AND you see improvement then I think it is something to pursue. Again, I take 8-9 packets a day!!! And I am not Andre The Giant!!! This is not usually an overnight solution to your problem. It took me awhile to get results and then awhile to be ok with increasing the dosage (which was more mental block than anything!!).

And I know Tex isn't a real personal fan of digestive enzymes....but digestive enzymes AND Betaine HCl were the final pieces to my puzzle. Cholestyramine only took me so far-the other 2 things stopped my gut rolling/churning! I take 1 digestive enzyme with meals BUT take quite alot of Betaine HCl-again, I'm some weird outlier for my size I guess.

I supplement with fat soluble vitamins (don't ask how much Vit D3 I take to keep my levels up-that's crazy too) because of how much of the cholestyramine I take. I also can't stop my oral magnesium..have tried that a few times and things go twitchy with bad sleep! I always eat breakfast, sometimes eat lunch and mostly eat dinner->I take my cholestyramine "drink" of 4 packets in like 12 oz of water like 1-1/5 hours after breakfast and the same after dinner. I still work full time so that morning cholestyramine is at work. I started with mag oil and lotion before switching over to orals when life had gotten pretty good. And I mean I slathered myself with that lotion! Morning, at lunch at work then before bed.

My personal belief is that many people would benefit from cholestyramine when nothing else works. But they don't use the right brand, they don't use ENOUGH of it and/or they don't USE IT FOR LONG ENOUGH to really say it didn't work. That's just me talking-that's my story. I just got hung up on the LOW amounts that I read everyone else used. My biggest mental block was going from 6 to 8 packets. But that jump truly opened the door to a more normal life. I'm not perfect, never will be. I still take 1/2 to 1 immodium on occasion and I do this when I travel to not worry about things. Constipation is still NEVER an issue for me I have started to travel more! And will be back in Sweden in July for 2 weeks! I'm wondering if I can actually send a whole box of cholestyramine packets to a relative there to cut down on my carryon stuff!!!

Don't give up folks-I didn't...
Thanks Potty People!

Laine
0

[tex]

Laine,

Many thanks for taking the time to post that message — that advice is much more valuable to many individuals here than they realize. As I've said numerous times, you're clearly the expert here on the use of bile acid sequestrants to put MC into remission, and I have a hunch, you may well be the foremost expert in the world.

Thanks again, I sincerely appreciate your help.

All my best,

Tex

[Catieu]

Thank you so much, Laine.
I’ve seen your message and will follow your advice.

A big hug,

Marta

[Catieu]

Hello everyone,

I took a long time to come and update my status because I've been experiencing ups and downs, and I wanted to have good news to share. But unfortunately, I can't say that I'm doing well.

Colesevelam has helped me. At a dose of four pills before bed, I was able to have normal bowel movements for a few days. But progressively, it stopped being effective. This didn’t surprise me too much because the same thing happened with lower doses. I thought about maintaining this dose for a few days and then increasing it. But while waiting, my condition worsened, and for the past couple of weeks, I have been having completely watery stools every day. I don’t understand anything. I haven’t changed a single thing. In fact, I have restricted my diet even more, eating only the foods I started with. I increased the dose of Colesevelam, but it made no difference. I added enzymes, and that didn’t help either. Honestly, I don’t know what else to do. It’s so frustrating! The energy I had regained has completely disappeared, and I’m starting to feel lightheaded again, as has happened to me before. And I don’t even want to weigh myself anymore!

I think I might be in the middle of a completely uncontrolled flare-up and just have to wait for it to pass.

I also wonder if it could be a thyroid issue. This sudden worsening doesn’t make any sense. I’ve been thinking about writing to my endocrinologist to request blood tests, just in case my thyroid levels are off. My last blood test was in January, and everything was fine, but my doctor increased my Levothyroxine dosage to reach more optimal levels. Maybe that increase was too much.

I don’t know… What do you think?

Thank you so much.

A big hug,
Marta

[tex]

Any good brand should work. Most members there seem to use Ancient Minerals brand of magnesium oils and lotions. Yes, sea water contains magnesium chloride which should be helpful.

Tex

[Catieu]

Hi Tex, thanks for replying.
I don't understand your answer.
I am not deficient in Magnesium. In all the tests I have done since I read the forum I always ask for the erythrocyte and I have it in normal range.

[tex]

I don't understand my response, either. My computer must be playing tricks on me. I was responding to a post that asked whether the brand of magnesium oil mattered. My computer must've switched pages while I wasn't looking.

Regarding your thyroid treatment, undertreated hypothyroidism can cause constipation, and over treated hypothyroidism can cause diarrhea. Whether or not it can cause watery diarrhea, I have no idea. But if your endocrinologist has prescribed significantly too much levothyroxine and you started taking it a few days before your diarrhea started, that certainly could be the cause of your problem.

I hope this response makes more sense than my last response. LOL.

Tex