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Rose,
That's an encouraging report. His outline of what's going on seems plausible.
Yes, Colestipol HCL and Welchol are both bile acid sequestrants . They have different ingredients, though, so maybe Colestipol HCL will be more effective. Also, it may be more effective in the combination of treatments that he prescribed. The downside is that it contains artificial flavor, aspartame, citric acid, mannitol, natural flavor, and maltol. If this were a food, the source of the artificial flavor, and the natural flavor would have to be disclosed, but that requirement does not apply to pharmaceuticals, so it's possible that these ingredients could be derived from wheat. Many of us react adversely to aspartame, citric acid, and any of the sugar alcohols, such as mannitol, sorbitol, etc. The most suspicious ingredient, though, is the maltol, which can be derived from the bark of the larch tree, pine needles, or roasted malt (from which it gets its name). Malt comes from barley, of course, and anyone who is gluten intolerant, is also intolerant of the hordein in barley, (and barley malt).
There's no guarantee that any of these ingredients will cause you to react, but it's certainly a possibility to keep in mind, if this program doesn't go as planned. Hopefully, the Entocort EC will be enough to mask any adverse effects from those ingredients.
The idea of taking Entocort at night, in order to "sleep off" the side effects is an interesting one. I'm not sure that your doctor understands the math involved with the pharmacokinetics of Entocort EC. If budesonide, (the active ingredient in Entocort EC), is administered intravenously, the plasma elimination half-life, (IOW, the time at which the concentration of budesonide in the blood drops to one-half it's initial value), ranges between 2.0 and 3.6 hours. Taking Entocort EC orally, results in a time-to-peak-concentration, that varies between 30 and 600 minutes, for individual patients. That means that at somewhere between 2.5 and 13.6 hours after taking the Entocort EC, the level of budesonide in the bloodstream will be one-half the maximum value. Therefore, if you are one who's serum budesonide half-life falls at the lower end of that range, then you might sleep it off. If your response is at the other extreme, however, obviously, you are not going to "sleep it off". Of course, taking only 3 mg per day, (together with the timing), may reduce the adverse neurological side effects to a point where they are not significant. It will be interesting to see how that plays out. Doctors always claim that we are either allergic to an item, or we are not, but if this works, then it proves that my contention is correct - there is indeed a gray area, and dose does matter in triggering allergic reactions.
This treatment is certainly worth a try, despite the caveats about some of the ingredients. Here's hoping for the best.
Love,
Tex
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Tex,
I was wondering about the Colestipol, I saw the ingredients list on rxlist and thought that there might be gluten in it. Personally, it sounds like it is full of garbage. I have to think about that one, deep down I do not want to take it. I do not want to re-gluten my system by any means. I also do not like taking a lot drugs at one time (I think that it is too hard to tell what is working and what isn't working and I don't like all this mixing).
As far as the Entocort goes, I was planning on taking it in the am anyways b/c I want to take it with food. I don't like to sleep off anything. If something freaky is going to happen I want to be wide awake for it so I can determine if it is right for me.
Thanks again for everything. I appreciate all of your thoughts and so does my husband. His first words to me this afternoon was "What does Tex have to say about all this." Feel the love, Tex, feel the love.
Love,
Rose
I was wondering about the Colestipol, I saw the ingredients list on rxlist and thought that there might be gluten in it. Personally, it sounds like it is full of garbage. I have to think about that one, deep down I do not want to take it. I do not want to re-gluten my system by any means. I also do not like taking a lot drugs at one time (I think that it is too hard to tell what is working and what isn't working and I don't like all this mixing).
As far as the Entocort goes, I was planning on taking it in the am anyways b/c I want to take it with food. I don't like to sleep off anything. If something freaky is going to happen I want to be wide awake for it so I can determine if it is right for me.
Thanks again for everything. I appreciate all of your thoughts and so does my husband. His first words to me this afternoon was "What does Tex have to say about all this." Feel the love, Tex, feel the love.
Love,
Rose
Wow! That makes me wish I knew what I was talking about. 
Seriously, remember that my background is not medically related. I'm just a student of MC, like everyone else, here.
I do appreciate the kind words, though.
Love,
Tex
Seriously, remember that my background is not medically related. I'm just a student of MC, like everyone else, here.
I do appreciate the kind words, though.
Love,
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.
Rose,
I am appalled that your doctor put you on Xifaxin without testing you first. My doctor put me on Neomycin without testing me saying that if Neo worked some that he would then put me on Xifaxin, but Neo made me so sick, vomiting and severe D that we never got that far. After Neo imodium nor Lomotil wouldn't work where they worked before Neo. I haven't been the same since. That was 2 years ago. I wish you luck and hope it works for you and not the opposite. It will be a cold day in you-know-where before I take another antibiotic. Good Luck!
Pat
P.S. Welchol didn't work for me either.
I am appalled that your doctor put you on Xifaxin without testing you first. My doctor put me on Neomycin without testing me saying that if Neo worked some that he would then put me on Xifaxin, but Neo made me so sick, vomiting and severe D that we never got that far. After Neo imodium nor Lomotil wouldn't work where they worked before Neo. I haven't been the same since. That was 2 years ago. I wish you luck and hope it works for you and not the opposite. It will be a cold day in you-know-where before I take another antibiotic. Good Luck!
Pat
P.S. Welchol didn't work for me either.
Pat,
According to my GI, Xifaxin works strictly for bacterial infections of the intestine and stays in the digestive system. The antibiotic is not absorbed in the blood. It suppose to stop the growth of bacteria. So far I am just a little nauseated, but I have to give it a try.
Tex,
We (dh and I) decided that I would not take the Colestipol. Bill (my dh) said that there is no way I am taking anything with gluten in it. BTW, we know that you do not have a degree in medicine, but you make more sense than the GI's (and you have our best interest at heart, not our insurance $$$). LOL.
Love,
Rose
According to my GI, Xifaxin works strictly for bacterial infections of the intestine and stays in the digestive system. The antibiotic is not absorbed in the blood. It suppose to stop the growth of bacteria. So far I am just a little nauseated, but I have to give it a try.
Tex,
We (dh and I) decided that I would not take the Colestipol. Bill (my dh) said that there is no way I am taking anything with gluten in it. BTW, we know that you do not have a degree in medicine, but you make more sense than the GI's (and you have our best interest at heart, not our insurance $$$). LOL.
Love,
Rose
Rose,
Yes, Xifaxin, seems to be a pretty safe antibiotic. It is indeed non-absorbable, and, it specifically targets E. coli bacteria, and it's pretty much ineffective against most other bacteria, so it should not upset your overall bacterial population, (other than to remove the E. coli). Also, it does not appear to cause antibiotic resistance, which is why I view it as a generally "safe" antibiotic.
I did a little more checking on Colestipol, and found that there is apparently a difference in ingredients, from brand to brand. This one, for example, does not appear to contain any objectionable ingredients:
http://www.rxlist.com/colestid-drug.htm
You may just need to discuss this with your pharmacist, since they are usually familiar with ingredients of various drugs, and the problems connected with intolerances. One thing to remember about the cholesterol-sequestering drugs, though, is the fact that they often/usually interfere with the absorption of certain other elements of one's diet. For example, it is sometimes recommended that one take a multivitamin when taking Colestipol, because it makes the absorption of vitamins much more difficult. Also, it retards the absorption of things such as certain steroids, (hydrocortisone, for example). I have no idea if that would also apply to budesonide, though.
Anyway, you might want to take another look at another brand of colestipol, such as Colestid, just in case your new GI's treatment utilizes synergism, (IOW, it might work far better when every component is included).
Love,
Tex
Yes, Xifaxin, seems to be a pretty safe antibiotic. It is indeed non-absorbable, and, it specifically targets E. coli bacteria, and it's pretty much ineffective against most other bacteria, so it should not upset your overall bacterial population, (other than to remove the E. coli). Also, it does not appear to cause antibiotic resistance, which is why I view it as a generally "safe" antibiotic.
I did a little more checking on Colestipol, and found that there is apparently a difference in ingredients, from brand to brand. This one, for example, does not appear to contain any objectionable ingredients:
http://www.rxlist.com/colestid-drug.htm
You may just need to discuss this with your pharmacist, since they are usually familiar with ingredients of various drugs, and the problems connected with intolerances. One thing to remember about the cholesterol-sequestering drugs, though, is the fact that they often/usually interfere with the absorption of certain other elements of one's diet. For example, it is sometimes recommended that one take a multivitamin when taking Colestipol, because it makes the absorption of vitamins much more difficult. Also, it retards the absorption of things such as certain steroids, (hydrocortisone, for example). I have no idea if that would also apply to budesonide, though.
Anyway, you might want to take another look at another brand of colestipol, such as Colestid, just in case your new GI's treatment utilizes synergism, (IOW, it might work far better when every component is included).
Love,
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.
Tex,
Well last night was crazy. I was up all night with stomach pains and when I took the Xifaxin at 2:30 am about 1/2 hour later I have the most terrible cramping/pain (right up there with child birth) and then the explosion of d. I mean every 10 minutes my stomach would start and I was doubled over and then in the office. When I read the rx sheet that came with the presc. I saw that this a s/e of the med. I called the dr. office this am and I am waiting for them to call me back.
Looks like I am back to square one. On the other hand, I am still taking the 3 mg of Entorcort. I am not taking the other drug b/c of the gluten issue.
Love,
Rose
Well last night was crazy. I was up all night with stomach pains and when I took the Xifaxin at 2:30 am about 1/2 hour later I have the most terrible cramping/pain (right up there with child birth) and then the explosion of d. I mean every 10 minutes my stomach would start and I was doubled over and then in the office. When I read the rx sheet that came with the presc. I saw that this a s/e of the med. I called the dr. office this am and I am waiting for them to call me back.
Looks like I am back to square one. On the other hand, I am still taking the 3 mg of Entorcort. I am not taking the other drug b/c of the gluten issue.
Love,
Rose
Rose,
That's a heck of a note, when the treatment is worse than the disease. In case no one calls today from your doctor's office:
Antibiotics can really be a problem, for some of us.
Love,
Tex
That's a heck of a note, when the treatment is worse than the disease. In case no one calls today from your doctor's office:
http://www.salix.com/products/xifaxan/index.aspxXIFAXAN should be discontinued if diarrhea symptoms get worse or persist more than 24-48 hours and alternative antibiotic therapy should be considered.
Antibiotics can really be a problem, for some of us.
Love,
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.
Tex,
Boy you are not kidding. I did not take my 10:30 am dosage and don't plan on taking any more of that stuff. I told the nurse in my message that I was not going to take it. As far as I am concerned there was no SIBO confirmed and he just prescribed this to get rid of SIBO if there was any present. He said that it is hard to detect. BTW, I am getting a copy of the report from my GP. Bill and I both think that this is incorrect since it took so long for the hospital to get the results to my doctor.
Love,
Rose
Boy you are not kidding. I did not take my 10:30 am dosage and don't plan on taking any more of that stuff. I told the nurse in my message that I was not going to take it. As far as I am concerned there was no SIBO confirmed and he just prescribed this to get rid of SIBO if there was any present. He said that it is hard to detect. BTW, I am getting a copy of the report from my GP. Bill and I both think that this is incorrect since it took so long for the hospital to get the results to my doctor.
Love,
Rose
Rose,
Remember that Xifaxan is basically prescribed to control E. coli infections, so it's hard to say what your GI doc had in mind, when he wrote the prescription. Apparently, it will control C. diff, however, so he might have had either one, or both, in mind. I can't find a dosage recommendation for C. diff, but I can see where trials were conducted, a few years ago, for that purpose.
I'm suspicious of the hospital report, too. I wonder if they may have lost the results, (or the original sample), and just reported a negative result, in order to "cover someone's butt". Since false negative results are very common with C. diff cultures, anyway, no one would be able to prove that report wrong. If there's any doubt, it's best to try another test. If you do so, and get a positive result, you would probably be ahead asking for Vancomycin, since it's arguably the best choice for treating a C. diff infection, anyway. Hopefully, it might be more tolerable than the Xifaxan. I'm not sure what effect Vancomycin would have on E. coli, though. The thing is, there are almost always certain strains of E. coli present in a stool sample, and the lab technician must specifically look for toxic strains. The most virulent strain, that usually causes the problems that make the national headlines, (O157:H7), is apparently resistant to all antibiotics, so there is no treatment for it, except bed rest, and drinking plenty of fluids, etc. E. coli infections usually run their course in a few days or so, anyway. Of course, C. diff will eventually run it's course, but it can last a long time.
Love,
Tex
Remember that Xifaxan is basically prescribed to control E. coli infections, so it's hard to say what your GI doc had in mind, when he wrote the prescription. Apparently, it will control C. diff, however, so he might have had either one, or both, in mind. I can't find a dosage recommendation for C. diff, but I can see where trials were conducted, a few years ago, for that purpose.
I'm suspicious of the hospital report, too. I wonder if they may have lost the results, (or the original sample), and just reported a negative result, in order to "cover someone's butt". Since false negative results are very common with C. diff cultures, anyway, no one would be able to prove that report wrong. If there's any doubt, it's best to try another test. If you do so, and get a positive result, you would probably be ahead asking for Vancomycin, since it's arguably the best choice for treating a C. diff infection, anyway. Hopefully, it might be more tolerable than the Xifaxan. I'm not sure what effect Vancomycin would have on E. coli, though. The thing is, there are almost always certain strains of E. coli present in a stool sample, and the lab technician must specifically look for toxic strains. The most virulent strain, that usually causes the problems that make the national headlines, (O157:H7), is apparently resistant to all antibiotics, so there is no treatment for it, except bed rest, and drinking plenty of fluids, etc. E. coli infections usually run their course in a few days or so, anyway. Of course, C. diff will eventually run it's course, but it can last a long time.
Love,
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.
Tex,
I saw that about the E. coli as well when I first looked up the meds and thought that it was strange. According to the GI, he believes that there is SIBO and that this will treat it. I have had such a rough night and my gut still feels raw. Even drinking water sends my gut gurgling. I was in the office constantly last night (way too many conference calls) and needless to say I have been scrubbing bathrooms this morning. So far I have been playing telephone tag with my GI's nurse (but hey at least she calls me back LOL). I have not taken anymore of that stuff and will talk to her about the Vancomycin. I think that I will probably have to redo the test.
Love,
Rose
I saw that about the E. coli as well when I first looked up the meds and thought that it was strange. According to the GI, he believes that there is SIBO and that this will treat it. I have had such a rough night and my gut still feels raw. Even drinking water sends my gut gurgling. I was in the office constantly last night (way too many conference calls) and needless to say I have been scrubbing bathrooms this morning. So far I have been playing telephone tag with my GI's nurse (but hey at least she calls me back LOL). I have not taken anymore of that stuff and will talk to her about the Vancomycin. I think that I will probably have to redo the test.
Love,
Rose
Rose,
I'm really sorry to hear that it's still affecting you so severely. I can't find any information on Xifaxan's half-life, but since it is non-systemic, surely it should be just about all out of your system by now, so hopefully, your reaction to it will settle down pretty soon. What a bummer. If I recall correctly, Xifaxan is a pretty expensive antibiotic.
Love,
Tex
I'm really sorry to hear that it's still affecting you so severely. I can't find any information on Xifaxan's half-life, but since it is non-systemic, surely it should be just about all out of your system by now, so hopefully, your reaction to it will settle down pretty soon. What a bummer. If I recall correctly, Xifaxan is a pretty expensive antibiotic.
Love,
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.
Rose,
That reminds me once again of why I believe that there is something else going on to cause your GI issues. As effective as Humira is, in controlling Crohn's disease, it should surely control MC. I'm surprised that your GI doc hasn't noticed that, but maybe he has, and he just hasn't mentioned it. We have at least one other member who takes an anti-TNF med, (Remicade, I believe), for RA, and she noted that her MC symptoms resolved almost immediately, when she started the treatment, and she has never adopted a GF diet.
Maybe it would help to discuss this with your GI doc, (the failure of the Humira to resolve your MC symptoms).
Love,
Tex
That reminds me once again of why I believe that there is something else going on to cause your GI issues. As effective as Humira is, in controlling Crohn's disease, it should surely control MC. I'm surprised that your GI doc hasn't noticed that, but maybe he has, and he just hasn't mentioned it. We have at least one other member who takes an anti-TNF med, (Remicade, I believe), for RA, and she noted that her MC symptoms resolved almost immediately, when she started the treatment, and she has never adopted a GF diet.
Maybe it would help to discuss this with your GI doc, (the failure of the Humira to resolve your MC symptoms).
Love,
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.
Tex,
Well you know my prior GI doc told me that "Humira is what I use for my Crohns patients and you are on the same dose so your cc should be controlled." He said that he uses Humira as a last resort b/c it is so expensive.
I don't know what the heck is going on. I am so frustrated, mad, you name it, I just got off the phone with the nurse and she told me to get of the antibiotic and that I should take the Colestipol. I told her that I have a gluten intolerance and she said that the Dr. looked through my records and did not find anything that supports this. I told her if I ingest gluten she would have to clean my bathrooms. She laughed and I asked her if the dr. wants to see me again and she said if I can not take the meds what would be the point.
I think I need Dee for this one.
Love,
Rose
Gotta go we are in a tornado watch and a big bolt of lightning just struck close by.
Well you know my prior GI doc told me that "Humira is what I use for my Crohns patients and you are on the same dose so your cc should be controlled." He said that he uses Humira as a last resort b/c it is so expensive.
I don't know what the heck is going on. I am so frustrated, mad, you name it, I just got off the phone with the nurse and she told me to get of the antibiotic and that I should take the Colestipol. I told her that I have a gluten intolerance and she said that the Dr. looked through my records and did not find anything that supports this. I told her if I ingest gluten she would have to clean my bathrooms. She laughed and I asked her if the dr. wants to see me again and she said if I can not take the meds what would be the point.
I think I need Dee for this one.
Love,
Rose
Gotta go we are in a tornado watch and a big bolt of lightning just struck close by.