I need your help please.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Re: I need your help please.
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
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
Re: I need your help please.
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
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
Re: I need your help please.
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
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Re: I need your help please.
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!
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!
Re: I need your help please.
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
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Re: I need your help please.
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
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
Re: I need your help please.
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
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
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Re: I need your help please.
Thank you very much Tex, I will do so.
A big hug
Marta
A big hug
Marta
Re: I need your help please.
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
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
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Re: I need your help please.
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
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
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Re: I need your help please.
Thank you so much, Laine.
I’ve seen your message and will follow your advice.
A big hug,
Marta
I’ve seen your message and will follow your advice.
A big hug,
Marta