Xifaxin
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Xifaxin
Trying a new med today. Xifaxin. My GI in Boston called me today and looked at my colonoscopy slides from November and then February and says there is slight inflamation but no MC anymore. I do have functional bowels he says and wants me to try Xifaxin. Lets see what happens.
well Lisa whatever is wrong or not wrong with you, if it is MC or it's not MC, most important is you find a way to feel well again. I hope this medicin will make you feel better.
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
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MaggieRedwings
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I do hope the medicine helps and if you no longer have MC it must have been a miracle cure. I think your GI needs to do a real thorough check and in conjunction with other doctors on his team, get to the bottom of your problems. That is an extremely powerful antibiotic as Pat mentioned, and regardless of your view on how it works with functional bowels, I would possibly seek help from another GI. Boston is not the end all and be all of doctors - I have been there and know.
Maggie
Maggie
Maggie Scarpone
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Resident Birder - I live to bird and enjoy life!
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Resident Birder - I live to bird and enjoy life!
Hi Lisa,
"Functional bowels" is another term for IBS (irritable bowel syndrome). A diagnosis of IBS should only be made after all other tests are negative. But your biopsy was NOT negative - it showed inflammation, which means you have IBD (inflammatory bowel disease) or MC in your case. Having a "slight" inflammation is like being a little bit pregnant - it is an all or nothing condition, IMHO. It makes me nervous that your GI says he looked at your slides himself and came to this conclusion. A pathologist, not a GI doc, is the appropriate specialist to examine and have the final say on your biopsy slides. I have to say that I do not have much faith in your GI doc from what you have told us - he seems uninformed. But, of course, this seems to be the norm with regard to GI docs.
If I were you, I'd try MC medication and a good trial of diet (gluten, dairy, and soy-free) for at least 6 mo. before taking powerful antibiotics and IBS drugs.
Hugs,
Polly
"Functional bowels" is another term for IBS (irritable bowel syndrome). A diagnosis of IBS should only be made after all other tests are negative. But your biopsy was NOT negative - it showed inflammation, which means you have IBD (inflammatory bowel disease) or MC in your case. Having a "slight" inflammation is like being a little bit pregnant - it is an all or nothing condition, IMHO. It makes me nervous that your GI says he looked at your slides himself and came to this conclusion. A pathologist, not a GI doc, is the appropriate specialist to examine and have the final say on your biopsy slides. I have to say that I do not have much faith in your GI doc from what you have told us - he seems uninformed. But, of course, this seems to be the norm with regard to GI docs.
If I were you, I'd try MC medication and a good trial of diet (gluten, dairy, and soy-free) for at least 6 mo. before taking powerful antibiotics and IBS drugs.
Hugs,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
I just wondered what on earth are
Thinking a bit longer, this crossed my mind:
Functional bowels is another term for IBS (irritable bowel syndrome)
thanks Polly.
functional bowels
Thinking a bit longer, this crossed my mind:
Functional bowels is another term for IBS (irritable bowel syndrome)
thanks Polly.
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
I should have been more specific. The GI met with the pathologist and went over the slides from 2 colonoscopies. There was slight inflamation at first which could have been gastritis so they say, but because the medication and diet had not worked for 5 to 6 months, he wants to try the new medication. We have a plan of action, if this does not work, but I am crossing my fingers.
Hi Lisa,
I'm sorry if you feel that our attempts to help you are only bringing you grief. I'm sure that you feel that you understand your own situation well, and you trust your GI specialists, but you know what? There are hundreds of us here who know damn well that your GI doctors are just blowing smoke, and they simply don't know what they're doing, when it comes to dealing with MC. We've been there, done that, and we don't care to go down that road again. After learning the hard way, we now manage our own health, and we make our own decisions about how to deal with this disease, (regardless of what our well-meaning, but misguided GI doctors say).
Quite a few members here have tried rifaximin, (xifaxin), but so far no one has reported any significant, long-term benefits from it, even though some of them have tried the treatment more than once. If you want to try it, that is certainly your option, and we will support you in whatever you chose to do, (after all, we each have to decide how we are going to manage this disease, to the best of our abilities).
Please don't misinterpret the responses that you received as negative. Nothing would make any of us happier, than to see you in remission, and everyone who responded to you was simply trying to steer you in the right direction, out of love, not out of malice.
This is just my opinion, of course, but it is pretty clear that you are still in the denial stage, and you will never be able to control your symptoms unless you can get past that stage of grief. You can treat IBS all you want, but since IBS doesn't even exist, that's simply flogging a dead horse.
Nevertheless, we will support you, regardless of what you choose to do. If you choose to ignore our advice, though, you shouldn't be surprised when you receive responses from members who feel that you are going down the wrong path. After all, we are like a family here, and we worry about the well-being of our family members. To do anything less, would imply that we don't care what happens to you, and obviously, we do care what happens to you. We want to see you in remission, not going from doctor to doctor, for the rest of your life, seeking a diagnosis for who-knows-what, when you already have a valid diagnosis that you can't bring yourself to accept.
We are always here for you, and we would like to help, if you will allow us. If you won't allow us to help, then please take care of yourself, and update us on your progress, occasionally, if you are so inclined.
Tex
I'm sorry if you feel that our attempts to help you are only bringing you grief. I'm sure that you feel that you understand your own situation well, and you trust your GI specialists, but you know what? There are hundreds of us here who know damn well that your GI doctors are just blowing smoke, and they simply don't know what they're doing, when it comes to dealing with MC. We've been there, done that, and we don't care to go down that road again. After learning the hard way, we now manage our own health, and we make our own decisions about how to deal with this disease, (regardless of what our well-meaning, but misguided GI doctors say).
Quite a few members here have tried rifaximin, (xifaxin), but so far no one has reported any significant, long-term benefits from it, even though some of them have tried the treatment more than once. If you want to try it, that is certainly your option, and we will support you in whatever you chose to do, (after all, we each have to decide how we are going to manage this disease, to the best of our abilities).
Please don't misinterpret the responses that you received as negative. Nothing would make any of us happier, than to see you in remission, and everyone who responded to you was simply trying to steer you in the right direction, out of love, not out of malice.
This is just my opinion, of course, but it is pretty clear that you are still in the denial stage, and you will never be able to control your symptoms unless you can get past that stage of grief. You can treat IBS all you want, but since IBS doesn't even exist, that's simply flogging a dead horse.
Nevertheless, we will support you, regardless of what you choose to do. If you choose to ignore our advice, though, you shouldn't be surprised when you receive responses from members who feel that you are going down the wrong path. After all, we are like a family here, and we worry about the well-being of our family members. To do anything less, would imply that we don't care what happens to you, and obviously, we do care what happens to you. We want to see you in remission, not going from doctor to doctor, for the rest of your life, seeking a diagnosis for who-knows-what, when you already have a valid diagnosis that you can't bring yourself to accept.
We are always here for you, and we would like to help, if you will allow us. If you won't allow us to help, then please take care of yourself, and update us on your progress, occasionally, if you are so inclined.
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.
Lisa,
From yet another point of view here ----
A plan of action that I would be thinking about would be --- a ‘Second Opinion’.
Since, as you have indicated here, there are 2 sets of biopsy slides ---- from 2 separate colonosopy procedures, there would seem to be plenty of specimen slides to work with ---pathologically speaking. 2 procedures, with 2 sets of biopsies, is ENOUGH!
What you should know is that it is not unheard of (or that uncommon) for slides to be sent around to get opinions from pathologists outside of the practice that has made an original diagnosis. You could request such in your situation. You might request diagnostic review and verification from – for example, the Cleveland Clinic -- where Pathologists (at the CC) deal in a ton of Gastroenterology.
There was a study done a few years ago looking at the success rates of diagnosing MC between Pathologists who worked at centers where there was a higher number of MC patients being seen, and Pathologists working in situations in which they simply didn’t have the opportunity to see so many cases of MC. What was found in that study was that there was a fairly statistically significant difference in the accuracy of their assessments.
This study was probably done 5 or 6 years ago now (?) -- so is not new. One would hope this will change with time, but that's just a hope far as I know. I am sorry, but I don’t have time to go find this study for you today.
Given the health care setup today in Massachusetts today --- it is questionable, whether or not, your health coverage would cover such a second opinion, but if not, a patient can always cover the cost themselves.
Something I would be considering.
Gayle
From yet another point of view here ----
A plan of action that I would be thinking about would be --- a ‘Second Opinion’.
Since, as you have indicated here, there are 2 sets of biopsy slides ---- from 2 separate colonosopy procedures, there would seem to be plenty of specimen slides to work with ---pathologically speaking. 2 procedures, with 2 sets of biopsies, is ENOUGH!
What you should know is that it is not unheard of (or that uncommon) for slides to be sent around to get opinions from pathologists outside of the practice that has made an original diagnosis. You could request such in your situation. You might request diagnostic review and verification from – for example, the Cleveland Clinic -- where Pathologists (at the CC) deal in a ton of Gastroenterology.
There was a study done a few years ago looking at the success rates of diagnosing MC between Pathologists who worked at centers where there was a higher number of MC patients being seen, and Pathologists working in situations in which they simply didn’t have the opportunity to see so many cases of MC. What was found in that study was that there was a fairly statistically significant difference in the accuracy of their assessments.
This study was probably done 5 or 6 years ago now (?) -- so is not new. One would hope this will change with time, but that's just a hope far as I know. I am sorry, but I don’t have time to go find this study for you today.Given the health care setup today in Massachusetts today --- it is questionable, whether or not, your health coverage would cover such a second opinion, but if not, a patient can always cover the cost themselves.
Something I would be considering.
Gayle
I would suggest the breath test again. If you need the antibiotic take it but if you don't need it you don't take it. I wanted a pill to help me in the beginning. I virtually ignored the advice here on this board and searched for the the magic pill and I took many and had negative reactions. I just hate to see someone else go down that road. I am FINALLY on board with diet. But I do have to say that if a pill had worked for me I would have continued with it. Please don't feel that I am giving you grief. I just think you are making a mistake, just passing down my experiences. Make it if you must. Hey, Maybe you will get lucky! 
Pat
Pat