I responded to Marta on this via private message...I forgot about her thyroid issues which I don't have to deal with. The thing that makes me think you have bile acid issues Marta is that you do get some fairly significant positive response initially to taking it (and you've tried 2 different types, I've only done cholestyramine). I honestly DID NOT RESPOND THAT QUICKLY to it!!! I just saw some very slight improvement, slowly inched up with dosage, stopped it twice thinking it wasn't helping, etc, etc, etc. I still swing back and forth from 8-9 packets a day. Currently I've been taking 8 1/2 for a few months now. Again, this plus A LOT of Betaine HCl with each meal and one digestive enzyme.
My two cents worth-
Don't give up. You are the cavalry Marta and you have to ride in and save yourself!!! I figured that one out the hard way (like most of us have I think).
Laine
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.
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Re: I need your help please.
Hello again, I have already spoken with the endocrinologist and she also agrees that it is possible that the increase in doses has caused this setback. I have already lowered it again. I hope it will gradually improve. I will let you know....
Thank you very much to all of you
A big hug
Marta
Thank you very much to all of you
A big hug
Marta
Re: I need your help please.
Hello everyone,
I’m here to share my current situation and see if anyone has any ideas because, honestly, I’m starting to feel a bit desperate.
I changed my thyroid medication dosage because I thought it might be the reason for my worsening condition. Enough time has passed that I should have improved if that had been the cause, but now I don’t think it was, as I haven’t seen any improvement.
As I told you before, I was taking Colesevelam as an alternative to Cholestyramine, which didn’t sit well with me. I reached a dose of four pills a day and had a few days of normal bowel movements. Then, progressively, things started getting worse for no apparent reason. I added enzymes and Betaine, as Laine suggested, but I didn’t improve. After changing my thyroid medication, I tried restricting my diet even further (only turkey, potato, sweet potato, and apple), but there was no improvement. I stopped taking all supplements, including Colesevelam, but still no improvement. I reintroduced Colesevelam gradually—no change.
I’ve been on a restrictive diet for over a year, and I swear I haven’t deviated from it even once. I’ve removed all gluten from my home, making my family stop consuming it as well. I’ve eliminated all kinds of toxins and potential triggers in cosmetics, detergents, etc. I’ve been on medical leave for a year and a half, dedicating my time to taking care of myself since I can’t live a normal life due to this disease and the lack of energy it brings.
I’m out of ideas. I don’t know what else to do. It’s a very disheartening situation.
Does anyone have any other suggestions I could try?
Thank you so much.
A big hug,
Marta
I’m here to share my current situation and see if anyone has any ideas because, honestly, I’m starting to feel a bit desperate.
I changed my thyroid medication dosage because I thought it might be the reason for my worsening condition. Enough time has passed that I should have improved if that had been the cause, but now I don’t think it was, as I haven’t seen any improvement.
As I told you before, I was taking Colesevelam as an alternative to Cholestyramine, which didn’t sit well with me. I reached a dose of four pills a day and had a few days of normal bowel movements. Then, progressively, things started getting worse for no apparent reason. I added enzymes and Betaine, as Laine suggested, but I didn’t improve. After changing my thyroid medication, I tried restricting my diet even further (only turkey, potato, sweet potato, and apple), but there was no improvement. I stopped taking all supplements, including Colesevelam, but still no improvement. I reintroduced Colesevelam gradually—no change.
I’ve been on a restrictive diet for over a year, and I swear I haven’t deviated from it even once. I’ve removed all gluten from my home, making my family stop consuming it as well. I’ve eliminated all kinds of toxins and potential triggers in cosmetics, detergents, etc. I’ve been on medical leave for a year and a half, dedicating my time to taking care of myself since I can’t live a normal life due to this disease and the lack of energy it brings.
I’m out of ideas. I don’t know what else to do. It’s a very disheartening situation.
Does anyone have any other suggestions I could try?
Thank you so much.
A big hug,
Marta
Re: I need your help please.
Some of us react to sweet potato. Have you tried avoiding sweet potato for two or three days of to see if it makes any difference?
What are you drinking?
Are you taking any medications?
Tex
What are you drinking?
Are you taking any medications?
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.
I haven’t tried cutting out sweet potato yet. I’ll do it, though I don’t think it’s the problem—hopefully, it is! Before this worsening and ever since I started the diet, I’ve been eating it and have always tolerated it well. I’ll limit myself to just turkey and potato for a few days and see if there’s any luck.
I only drink filtered water and the homemade electrolyte solution you suggested—nothing else.
I’m taking my thyroid medication, which is the only one I’ve never stopped (Levothyroxine and Liothyronine), and Colesevelam. The supplements I eliminated for over a week and have now reintroduced since there was no improvement are vitamin D, Omega-3, enzymes with Betaine, a Cordyceps-based supplement to lower thyroid antibodies, and a Vitex-based supplement to regulate my menstrual cycle.
Except for the thyroid medication, I cut everything out for more than a week without any improvement.
What I also don’t understand is that even though my bowel movements aren’t improving, there are days when I feel better—less pain and more energy—and then days like today when the pain is relentless, and I’m completely exhausted.
Another thing I wonder is whether eating food that was prepared the day before or even earlier could have an impact. For example, when I make mashed potatoes, I prepare a larger batch to last me two or three days. I do the same with the compote and the turkey meat that I cook in the pressure cooker. Also, I buy organic meat online and freeze it when it arrives. It comes vacuum-sealed, and each bag contains two or three portions. Once defrosted, sometimes it stays in the fridge for a couple of days before I finish it. But I’ve been doing this since the beginning, and it wasn’t an issue before.
Should I assume that something I used to do without a problem might now be affecting me?
My mind won’t stop thinking.
I only drink filtered water and the homemade electrolyte solution you suggested—nothing else.
I’m taking my thyroid medication, which is the only one I’ve never stopped (Levothyroxine and Liothyronine), and Colesevelam. The supplements I eliminated for over a week and have now reintroduced since there was no improvement are vitamin D, Omega-3, enzymes with Betaine, a Cordyceps-based supplement to lower thyroid antibodies, and a Vitex-based supplement to regulate my menstrual cycle.
Except for the thyroid medication, I cut everything out for more than a week without any improvement.
What I also don’t understand is that even though my bowel movements aren’t improving, there are days when I feel better—less pain and more energy—and then days like today when the pain is relentless, and I’m completely exhausted.
Another thing I wonder is whether eating food that was prepared the day before or even earlier could have an impact. For example, when I make mashed potatoes, I prepare a larger batch to last me two or three days. I do the same with the compote and the turkey meat that I cook in the pressure cooker. Also, I buy organic meat online and freeze it when it arrives. It comes vacuum-sealed, and each bag contains two or three portions. Once defrosted, sometimes it stays in the fridge for a couple of days before I finish it. But I’ve been doing this since the beginning, and it wasn’t an issue before.
Should I assume that something I used to do without a problem might now be affecting me?
My mind won’t stop thinking.
Re: I need your help please.
'Marta wrote:Should I assume that something I used to do without a problem might now be affecting me?
Yes, that has happened to many of us, including me.
Refrigerating foods shouldn't be a problem, because you don't appear to be eating any high histamine foods. Certain foods (such as chicken, fish, hot sauces, fermented foods, etc. continue to gain histamine if they're stored at refrigerator temperatures. They have to be stored at below 0°F (-18° C) In order to prevent the histamine level from becoming excessive. For example, fresh chicken is safe for me. But if it's stored in the refrigerator for three days or more (regardless of whether it's raw or cooked) it will cause me to have diarrhea.
I can recall feeling better some days than others back when I was still reacting, but that typically didn't happen on days when I was having diarrhea. That makes me wonder if something besides MC might be causing your diarrhea, or at least contributing to it.
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 Tex.
I have also thought that there might be something else. I don’t understand why I’m getting worse while doing the same thing—without changing anything!
But what could it be? Some kind of bacteria? Would it be appropriate to get a stool test? Or should I consider that it could be a virus that will go away on its own? In fact, I started getting worse in mid-February, and I haven’t recovered since. If there is something, it doesn’t want to leave…
I have also thought that there might be something else. I don’t understand why I’m getting worse while doing the same thing—without changing anything!
But what could it be? Some kind of bacteria? Would it be appropriate to get a stool test? Or should I consider that it could be a virus that will go away on its own? In fact, I started getting worse in mid-February, and I haven’t recovered since. If there is something, it doesn’t want to leave…
Re: I need your help please.
I believe it's time to reconsider your treatment, and consider other options. I went back and read some of your earlier posts. You've been a member of this forum for a little over a year and four months, with no significant improvement. I noticed in your first post that you said you had been treated with Beclomethasone. That's an asthma treatment. Do you have asthma, or was that treatment prescribed for MC? The correct treatment for MC should have been budesonide In the form of oral capsules.
A small percentage (2 or 3%) Of MC patients are unable to reach remission and stay in remission by using diet changes alone. Those severe cases have to use diet changes and a small maintenance dose of budesonide (one 3 mg capsule of budesonide per day, or less), in order to stay in long-term remission. We have some members here who have been in remission for over 12 or 15 years by using that treatment. At such low doses, the budesonide does not seem to cause any significant adverse side effects for any of those patients. A few patients even have to use a maintenance dose of 6 mg Of budesonide per day. But even at that does, they don't seem to be having any major problems, and their symptoms are well controlled.
I have no way of knowing for sure, but in my opinion, the reason those MC patients cannot achieve and remain in remission is because their immune system is hyperactive, and it refuses to settle down in response to the diet changes. By starting a budesonide treatment with the full recommended dose of 9 mg per day, and tapering the dose down to 3 mg per day or less, and then continuing with that as a maintenance dose, they are able to suppress the mast cell activity to a level below the threshold at which a reaction is triggered. If the budesonide works for them, they are able to reach remission, and remain in remission on the maintenance dose, as long as they are careful with their diet.
Tex
A small percentage (2 or 3%) Of MC patients are unable to reach remission and stay in remission by using diet changes alone. Those severe cases have to use diet changes and a small maintenance dose of budesonide (one 3 mg capsule of budesonide per day, or less), in order to stay in long-term remission. We have some members here who have been in remission for over 12 or 15 years by using that treatment. At such low doses, the budesonide does not seem to cause any significant adverse side effects for any of those patients. A few patients even have to use a maintenance dose of 6 mg Of budesonide per day. But even at that does, they don't seem to be having any major problems, and their symptoms are well controlled.
I have no way of knowing for sure, but in my opinion, the reason those MC patients cannot achieve and remain in remission is because their immune system is hyperactive, and it refuses to settle down in response to the diet changes. By starting a budesonide treatment with the full recommended dose of 9 mg per day, and tapering the dose down to 3 mg per day or less, and then continuing with that as a maintenance dose, they are able to suppress the mast cell activity to a level below the threshold at which a reaction is triggered. If the budesonide works for them, they are able to reach remission, and remain in remission on the maintenance dose, as long as they are careful with their diet.
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.
I have been prescribed beclomethasone for MC. I do not have asthma. It says in the package insert instructions that it is also used for ulcerative colitis and Crohn's disease. They first tried budesonide, but I did not tolerate it. However, beclomethasone worked from day one. I tried to control the disease with minimal doses and diet. Although I was not quite well, I was able to live a normal life. But I had to stop because it caused a cataract in one eye, what they call a corticosteroid cataract. After that, according to the doctor, corticosteroids were no longer a safe option for me.
Mesalazine didn't work for me either. I am not sure if there is a different way to take it, as with cholestyramine; I took it according to the directions on the package insert which were the same as what the doctor gave me.
Mesalazine didn't work for me either. I am not sure if there is a different way to take it, as with cholestyramine; I took it according to the directions on the package insert which were the same as what the doctor gave me.
Re: I need your help please.
Looking at your current diet, there's not much else you can do to it in your effort to reach remission. I can't think of any other dietary options to try, and the last resort treatment (after cholestyramine) is usually a maintenance dose of budesonide. Since you don't appear to be able to do that, the medical options are rather limited. I have never recommended that someone try a so-called "biologic" medication, But I'm going to have to suggest that you discuss treatment with a biologic with your doctor, because I'm out of ideas for other options, unfortunately.
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.
Thank you very much, Tex, for your input.
I’ve been thinking that before trying another option like the biological treatment you mentioned, I want to give Colesevelam another chance. The maximum dose I can take is six tablets. I reached four. When I started getting worse, I was taking three and increased to four. As my condition continued to worsen, I stopped taking it for a few weeks and then started again with the minimum dose, gradually increasing it.
This week, I have already started with three tablets again. I think I will maintain this dose for the rest of the week and the next, then increase it to four. I will continue this way, progressively, until I reach six tablets. If it still doesn’t work, I will make an appointment with the gastroenterologist to discuss other alternatives. He leans more towards immunosuppressants, but I really don’t like the idea of taking them. I will bring up the possibility of biological treatments.
Do you think this is a good approach?
Thank you so much!
A big hug,
Marta
I’ve been thinking that before trying another option like the biological treatment you mentioned, I want to give Colesevelam another chance. The maximum dose I can take is six tablets. I reached four. When I started getting worse, I was taking three and increased to four. As my condition continued to worsen, I stopped taking it for a few weeks and then started again with the minimum dose, gradually increasing it.
This week, I have already started with three tablets again. I think I will maintain this dose for the rest of the week and the next, then increase it to four. I will continue this way, progressively, until I reach six tablets. If it still doesn’t work, I will make an appointment with the gastroenterologist to discuss other alternatives. He leans more towards immunosuppressants, but I really don’t like the idea of taking them. I will bring up the possibility of biological treatments.
Do you think this is a good approach?
Thank you so much!
A big hug,
Marta
Re: I need your help please.
Yes, that's a much better idea than immunosuppressants/biologicals. Finding the best dose when using a bile acid sequestrant requires patience and perseverance, but it almost always works for MC patients who can't reach remission by making diet changes.
Also, I believe you could probably use more than six tablets if you needed more — The greatest risk is constipation.
Tex
Also, I believe you could probably use more than six tablets if you needed more — The greatest risk is constipation.
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.
Broken record here.....but I DIDN'T HAVE NORMAL BM'S that quickly. I guess my GI system just reacts positively OR negatively to things at a much slower rate!!! (Cancel that..I can react negatively very quickly to things...). I don't feel like anyone has ever told me what the MAXIMUM DOSAGE OF CHOLESTYRAMINE IS!!! What happens if you take more that 6 of those colesevalam pills a day? Seriously, I'm just asking? Because if I never inched the cholestyramine up to 8-9 packets...I would have never got to where I am now (ok, yes I have to take stomach acid and a digestive enzyme also). If constipation is the hard stop on inching that dosage up....keep going. Unless you are having other side effects that you just can't live with..
My main issue was bloating while increasing the cholestyramine. I don't get bloating now at 8.5 packets a day. I'm not perfect. Some things still set me off, some to a minor degree. We are just ending citrus season here in Arizona and my FAVORITE DRINK IN THE WORLD is fresh squeezed grapefruit juice. So of course I stop and pick up all the "free grapefruits" (really, people here put bags of citrus out front of their homes-it's great!) I can find. I know that drinking a very large glass of this stuff will make me somewhat less solid (but definitely not WD) but it's worth it to me! And because I take such a large amount of cholestyramine I have to take a large amount of supplemental fat soluble vitamins along with that. My PCP is cool with ordering the yearly blood tests to monitor that as well as it can be monitored (I pay for another Vit D test a year on my own also).
I know I'm the Queen of Cholestyramine here. I can only relate my story. But my story includes cranking the dosage way up when it made things better and then messing around with secondary things to fine tune it.
Laine
PS-pro tip on the free citrus->you need to go to OLD neighborhoods in the greater Phoenix/Mesa area to find these established citrus trees/free giveaways.
My main issue was bloating while increasing the cholestyramine. I don't get bloating now at 8.5 packets a day. I'm not perfect. Some things still set me off, some to a minor degree. We are just ending citrus season here in Arizona and my FAVORITE DRINK IN THE WORLD is fresh squeezed grapefruit juice. So of course I stop and pick up all the "free grapefruits" (really, people here put bags of citrus out front of their homes-it's great!) I can find. I know that drinking a very large glass of this stuff will make me somewhat less solid (but definitely not WD) but it's worth it to me! And because I take such a large amount of cholestyramine I have to take a large amount of supplemental fat soluble vitamins along with that. My PCP is cool with ordering the yearly blood tests to monitor that as well as it can be monitored (I pay for another Vit D test a year on my own also).
I know I'm the Queen of Cholestyramine here. I can only relate my story. But my story includes cranking the dosage way up when it made things better and then messing around with secondary things to fine tune it.
Laine
PS-pro tip on the free citrus->you need to go to OLD neighborhoods in the greater Phoenix/Mesa area to find these established citrus trees/free giveaways.
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Re: I need your help please.
Thank you very much, Tex and Laine. I will continue with Colesevelam, but this time I will do it very gradually and slowly. I think maybe my mistake the first time was to increase it too fast.
I hope I will be lucky and will be able to share good news with you in a few weeks.
I will also follow your advice, Laine, and start taking enzymes and betaine again.
Enjoy your grapefruit juice, what I wouldn't give to have a freshly squeezed one, but orange!!!
A big hug,
Marta
I hope I will be lucky and will be able to share good news with you in a few weeks.
I will also follow your advice, Laine, and start taking enzymes and betaine again.
Enjoy your grapefruit juice, what I wouldn't give to have a freshly squeezed one, but orange!!!
A big hug,
Marta