I am just finishing my 6 weeks of Entocort. No luck. I am eating Paleo except for potatoes. Still no luck. I even quit taking all vitamins and supplements. I guess I am having a little success, I have no reflux or stomach pains. I used to have to take Zantac for the reflux and sometimes Gas X for the stomach pains. I go see my Dr. tomorrow. I was supposed to see her last week but she was sick. I have been reading what Beth has been through so if it helps any, Beth, you're not alone.
Pat
Now what?
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Pat,
Considering that you have apparently been following a very well thought out plan, I agree that the results seem rather disappointing, to say the least.
We seem to be encountering some very tough cases, recently, and based on the evidence, and the related issues that we've discussed on this board recently, I'm beginning to suspect more and more, that bacterial imbalances, and especially small intestine bacterial overgrowth, (SIBO), is a major factor in these cases.
I'm going to describe a treatment plan, that was told to me by a new member, who has not yet posted, but who is currently in remission, presumably due to this treatment plan. I don't believe that she will mind me mentioning it here, if it will help someone.
She was diagnosed in mid-December, and the only changes she made to her diet was to cut out NSAIDs, and artificial sweeteners. Here's a quote from her email:
Lactobacillus acidophilus
Bifidobacterium
Lactobacillus paracasei
Streptococcus thermophilus
Xifaxan is an antibiotic that has the unusual property of remaining in the GI tract, (rather than entering the bloodstream, the way that most antibiotics do).
I doubt that it would matter whether the primary med was Asacol, or Entocort, the idea would still be the same. Notice the timeframes for the use of the probiotic and the antibiotic - they were started together, but the antibiotic was continued for four days after use of the probiotic was ended. I'm not familiar with Xifaxan. It may be an up-and-coming treatment for IBDs. Here's some information on a trial:
http://www.salix.com/newsroom/20051031.asp
I don't recall anyone here trying anything exactly like this before, (certainly not in the sequence that was prescribed by her doctor, anyway). I'd like to hear your thoughts on this, as I'm kind of puzzled by the order in which the meds were introduced, and withdrawn; but, as is always the case, it's hard to argue with success. Who knows? This may be the future for refractory cases of MC.
Tex
Considering that you have apparently been following a very well thought out plan, I agree that the results seem rather disappointing, to say the least.
We seem to be encountering some very tough cases, recently, and based on the evidence, and the related issues that we've discussed on this board recently, I'm beginning to suspect more and more, that bacterial imbalances, and especially small intestine bacterial overgrowth, (SIBO), is a major factor in these cases.
I'm going to describe a treatment plan, that was told to me by a new member, who has not yet posted, but who is currently in remission, presumably due to this treatment plan. I don't believe that she will mind me mentioning it here, if it will help someone.
She was diagnosed in mid-December, and the only changes she made to her diet was to cut out NSAIDs, and artificial sweeteners. Here's a quote from her email:
Okay, Flora-Q, as most of us are aware, is a probiotic, composed of four species of "good" bacteria, namely:I've been on Asacol (6 a day) for 6 weeks now. I saw no improvement and two weeks ago my GI Dr. put me on Flora-Q and Xifaxan and after a week of both, total improvement. I took the Flora-Q for 10 days and Xifaxan for 14 days, now I'm only on Asacol.
Lactobacillus acidophilus
Bifidobacterium
Lactobacillus paracasei
Streptococcus thermophilus
Xifaxan is an antibiotic that has the unusual property of remaining in the GI tract, (rather than entering the bloodstream, the way that most antibiotics do).
I doubt that it would matter whether the primary med was Asacol, or Entocort, the idea would still be the same. Notice the timeframes for the use of the probiotic and the antibiotic - they were started together, but the antibiotic was continued for four days after use of the probiotic was ended. I'm not familiar with Xifaxan. It may be an up-and-coming treatment for IBDs. Here's some information on a trial:
This quote is from:Inflammatory Bowel Disease
Dr. Daniel Feldman, Division of Gastroenterology, Maimonides Medical Center, Mount Sinai School of Medicine, Brooklyn, NY, et al. conducted a study to assess the efficacy and tolerability of XIFAXAN 800 mg daily (400 mg BID) as a steroid-sparing medication in 27 inflammatory bowel disease (IBD) patients , 11 with Crohn's Disease and 16 with ulcerative colitis. Response was defined as indication of remission without the addition of other medications. All patients had mild to moderate disease and were currently being treated with high dose mesalamine, mean dose of approximately 4.4 gm. Fourteen patients were treated with prednisone 40-60 gm orally daily and 13 patients were treated with XIFAXAN 400 mg BID. Improvement with prednisone resulted in prednisone being tapered after two weeks of therapy. Improvement with XIFAXAN resulted in XIFAXAN being tapered after two months of therapy. 13 of 14 predinsone patients responded to therapy. The nonresponder was subsequently treated with infliximab and experienced a complete response. Eleven of 13 XIFAXAN patients responded to therapy. Both nonresponders required the addition of corticosteroids and one was hospitalized.
http://www.salix.com/newsroom/20051031.asp
I don't recall anyone here trying anything exactly like this before, (certainly not in the sequence that was prescribed by her doctor, anyway). I'd like to hear your thoughts on this, as I'm kind of puzzled by the order in which the meds were introduced, and withdrawn; but, as is always the case, it's hard to argue with success. Who knows? This may be the future for refractory cases of MC.
Tex
Tex!
Your post is so timely! I have also been thinking that bacteria may be a major factor in our disease. (Thanks also to Mike, who has really been researching this issue and also Dr. Scot Lewey, whom I emailed last week and received a very interesting response). I have asked him if I could share his email on this Board, but he has not yet written back.
You will remember that Dr. Lewey is GI doc who has gluten and dairy sensitivity and writes a blog. Anyway, he feels that appropriate treatment is a bowel prep (cleanout), followed by a course of Rifaximin (which is another name for Xifaxin), followed by a probiotic - he recommends VSL#3 because it has the most research. I guess the purpose is to first knock off as many bad bacteria as possible by mechanically washing them out of the gut with the cleanout and then killing as many as possible of the remaining bacteria with the antibiotic (Xifaxin, which was developed for traveler's diarrhea). Then, the probiotic is used to repopulate the gut with good bacteria.
I have been seriously thinking about making an appt. with my GI doc and giving this treatment a try. Although I have been in remission for some years now, it gets tiresome having flares when accidentally ingesting food intolerances. And wouldn't it be wonderful if I could add back some of the "lesser" intolerances, like citrus, tomatoes, etc.? I have always just intuitively felt that there is an ongoing problem with my GI flora.
Love,
Polly
P.S. Pat......I can hear your frustration. How long has it been now?
Your post is so timely! I have also been thinking that bacteria may be a major factor in our disease. (Thanks also to Mike, who has really been researching this issue and also Dr. Scot Lewey, whom I emailed last week and received a very interesting response). I have asked him if I could share his email on this Board, but he has not yet written back.
You will remember that Dr. Lewey is GI doc who has gluten and dairy sensitivity and writes a blog. Anyway, he feels that appropriate treatment is a bowel prep (cleanout), followed by a course of Rifaximin (which is another name for Xifaxin), followed by a probiotic - he recommends VSL#3 because it has the most research. I guess the purpose is to first knock off as many bad bacteria as possible by mechanically washing them out of the gut with the cleanout and then killing as many as possible of the remaining bacteria with the antibiotic (Xifaxin, which was developed for traveler's diarrhea). Then, the probiotic is used to repopulate the gut with good bacteria.
I have been seriously thinking about making an appt. with my GI doc and giving this treatment a try. Although I have been in remission for some years now, it gets tiresome having flares when accidentally ingesting food intolerances. And wouldn't it be wonderful if I could add back some of the "lesser" intolerances, like citrus, tomatoes, etc.? I have always just intuitively felt that there is an ongoing problem with my GI flora.
Love,
Polly
P.S. Pat......I can hear your frustration. How long has it been now?
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Thanks for your responses. I don't know anything about the medications you mentioned but I will ask my Dr. tomorrow. I ran across another article on another BB that is very interesting.
http://www.geocities.com/ucfungus/index.html
Check it out and see what your think. Another theory for eliminating grains. The meds are different.
Thanks again,
Pat
http://www.geocities.com/ucfungus/index.html
Check it out and see what your think. Another theory for eliminating grains. The meds are different.
Thanks again,
Pat
Polly,
I think that the plan that you described makes a lot of sense, that's why I was puzzled to see the incongruence in the order of the sequencing of the antibiotic and the probiotic, in the program that I described in my previous post. I think that the doctor in that case, has it kind of backwards, but the treatment apparently worked anyway.
I'm intrigued by what you are saying about your own case. It never occurred to me that dysbiosis could be the reason why MC is "incurable", and why it can he triggered, at the drop of a hat, simply by eating the wrong food.
I have to admit, that it wasn't long after my surgery, that I began to discover that I could eat foods that I hadn't been able to eat in years. My surgery report shows that there was some leakage from my colon, during the operation, due to an improperly applied staple, so there's no doubt that my body was flooded with antibiotics for several days, in order to try to minimize any infection. That probably would have killed virtually everything in there. Also, I wasn't allowed to eat anything for a day or so, which would have starved any survivors, and surely weakened their resistance to the meds. I wasn't given any probiotics, though, but maybe I was just lucky enught to get off to a good start after the antibiotics wore off.
You know, you're been a pioneer in the treatment of MC ever since your diagnosis, and what you are suggesting, may just close the books on an "incurable" disease, if you are successful. It's pretty exciting to be able to get a front-row seat, as history is being made. If you decide to try that plan, I will certainly be rooting for you.
Love,
Tex
I think that the plan that you described makes a lot of sense, that's why I was puzzled to see the incongruence in the order of the sequencing of the antibiotic and the probiotic, in the program that I described in my previous post. I think that the doctor in that case, has it kind of backwards, but the treatment apparently worked anyway.
I'm intrigued by what you are saying about your own case. It never occurred to me that dysbiosis could be the reason why MC is "incurable", and why it can he triggered, at the drop of a hat, simply by eating the wrong food.
I have to admit, that it wasn't long after my surgery, that I began to discover that I could eat foods that I hadn't been able to eat in years. My surgery report shows that there was some leakage from my colon, during the operation, due to an improperly applied staple, so there's no doubt that my body was flooded with antibiotics for several days, in order to try to minimize any infection. That probably would have killed virtually everything in there. Also, I wasn't allowed to eat anything for a day or so, which would have starved any survivors, and surely weakened their resistance to the meds. I wasn't given any probiotics, though, but maybe I was just lucky enught to get off to a good start after the antibiotics wore off.
You know, you're been a pioneer in the treatment of MC ever since your diagnosis, and what you are suggesting, may just close the books on an "incurable" disease, if you are successful. It's pretty exciting to be able to get a front-row seat, as history is being made. If you decide to try that plan, I will certainly be rooting for you.
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.
Pat,
Those meds, (on the site you provided a link to), are used to treat a candida yeast overgrowth. While candida can be a problem for anyone, we are probably at a greater risk than the general public, since candida contributes to, (and thrives with), the leaky gut syndrome. Several members here have been treated for candida, but the symptoms of candida are pretty clear, so most doctors should be able to diagnose it, without much trouble.
If you have been on the paleo diet, (except for spuds), your chances of having a candida overgrowth are extremely slim. Candida thrives on grains, and sugars, and those are not a part of the paleo diet.
Also, eliminating candida does not cure UC. The author of that site was lucky enough to go into spontaneous remission about the time that the candida was brought under control, and naturally assumed that eliminating the candida, cured the UC. That's simply not the case - the UC can return at any time, with or without the candida.
That's my two cents worth.
Tex
Those meds, (on the site you provided a link to), are used to treat a candida yeast overgrowth. While candida can be a problem for anyone, we are probably at a greater risk than the general public, since candida contributes to, (and thrives with), the leaky gut syndrome. Several members here have been treated for candida, but the symptoms of candida are pretty clear, so most doctors should be able to diagnose it, without much trouble.
If you have been on the paleo diet, (except for spuds), your chances of having a candida overgrowth are extremely slim. Candida thrives on grains, and sugars, and those are not a part of the paleo diet.
Also, eliminating candida does not cure UC. The author of that site was lucky enough to go into spontaneous remission about the time that the candida was brought under control, and naturally assumed that eliminating the candida, cured the UC. That's simply not the case - the UC can return at any time, with or without the candida.
That's my two cents worth.
Tex
Hi Friends,
I don't have a lot of time as in-laws dropped in for a week visit ( and I thought gallbladder disease was painful:) but before all the gallbladder mess, I had started on caprylic acid pills as my naturopath did a stool test and tested the bad bacteria to see what would kill it and caprylic acid was one among other antibiotics. I was feeling great the week before my gallbladder mess ( 2 weeks on the caprylic acid) and was planning to start the probiotic next....but got interrupted. As soon as I have recovered fully, I am going to start over with this plan. I will let you all know how it goes.
Love,
Cristi
PS. Leo Galland said that if you test positive for a yeast allergy through Dr. Fine's stool test, there is a good possibility you have a yeast overgrowth problem.
I don't have a lot of time as in-laws dropped in for a week visit ( and I thought gallbladder disease was painful:) but before all the gallbladder mess, I had started on caprylic acid pills as my naturopath did a stool test and tested the bad bacteria to see what would kill it and caprylic acid was one among other antibiotics. I was feeling great the week before my gallbladder mess ( 2 weeks on the caprylic acid) and was planning to start the probiotic next....but got interrupted. As soon as I have recovered fully, I am going to start over with this plan. I will let you all know how it goes.
Love,
Cristi
PS. Leo Galland said that if you test positive for a yeast allergy through Dr. Fine's stool test, there is a good possibility you have a yeast overgrowth problem.
One other thought ...the advantage to using something like caprylic acid is that it can be used for a longer period of time without a lot of the negative side effects of an antibiotic and from what I have been reading...you often times need to take something for a long time for it to be effective in ridding yourself of the bad guys.
Love,
Cristi
Love,
Cristi
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kate_ce1995
- Rockhopper Penguin
- Posts: 1321
- Joined: Wed May 25, 2005 5:53 pm
- Location: Vermont
I'll just confirm the "eliminating NSAIDs" piece of this. Since ibuprofen is an over the counter med, I think the world has forgotten how harsh a medicine it can be. Anyway, my D went away when I stopped taking ibuprofen as my pain reliever of choice. I have since learned about my gluten sensitivity, and I also wonder about the bacterial overgrowth thing, mostly because of the belching I get. I'm trying to find a nutritionist who I can work with to work out some of these kinds of things. Maybe I just need to start reading more of the research here (which I haven't had free time for lately).
Anyway, Pat, my suggestion is looking at any other medicines you might be taking (if any) and see if they could be causing a problem...even those OTC pain relievers, cold meds, etc. If your reflux and stomach pain are better, I'd say you are heading in a positive direction and it is frustrating how long it can take.
Katy
Anyway, Pat, my suggestion is looking at any other medicines you might be taking (if any) and see if they could be causing a problem...even those OTC pain relievers, cold meds, etc. If your reflux and stomach pain are better, I'd say you are heading in a positive direction and it is frustrating how long it can take.
Katy
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Morning All,
Right after posting I am going to print this out and study it well. I do not do NSAIDs or artificial sweeteners, doing Paleo except potatoes and "meat" and am GF and honestly I feel like I am going backwards. Remission is a word I never type or utter and I feel it is something that I am never going to achieve. In the beginning - 5 years or so ago - we felt here that since I was a vegan and so "grain heavy" that it would take me more time to heal.
For the past 6 months mornings have been terrible and I expect that, but within the last 6 to 8 weeks afternoon and nights are becoming long and tiring with periods of D. I just cannot figure it out but am determined to get to the R stage.
So Pat, it can be a short road for some and for others a long road. You just need to stick to your plan and be persistent. It is bound to pay off.
If anybody has any tips for me, I would love to hear them since I am getting more tired day by day.
Love, Maggie
Right after posting I am going to print this out and study it well. I do not do NSAIDs or artificial sweeteners, doing Paleo except potatoes and "meat" and am GF and honestly I feel like I am going backwards. Remission is a word I never type or utter and I feel it is something that I am never going to achieve. In the beginning - 5 years or so ago - we felt here that since I was a vegan and so "grain heavy" that it would take me more time to heal.
For the past 6 months mornings have been terrible and I expect that, but within the last 6 to 8 weeks afternoon and nights are becoming long and tiring with periods of D. I just cannot figure it out but am determined to get to the R stage.
So Pat, it can be a short road for some and for others a long road. You just need to stick to your plan and be persistent. It is bound to pay off.
If anybody has any tips for me, I would love to hear them since I am getting more tired day by day.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Hey Maggie,
Sorry if I'm behind here, but are you taking any medications? Or are you handling your illness entirely through diet? I'm at the point where I know that I really need to get back on to pred to decrease the inflammation. Is that something you would consider? And I wondered if you've tried the Caltrate 600-plus method? I just started it yesterday, and so far so good (that is - no D since taking it . . . but one day is a very short time). I'm doing the same as you - printing this thread out and studying it very carefully before I go see my next doctor.
Here's to relief!
Beth
Sorry if I'm behind here, but are you taking any medications? Or are you handling your illness entirely through diet? I'm at the point where I know that I really need to get back on to pred to decrease the inflammation. Is that something you would consider? And I wondered if you've tried the Caltrate 600-plus method? I just started it yesterday, and so far so good (that is - no D since taking it . . . but one day is a very short time). I'm doing the same as you - printing this thread out and studying it very carefully before I go see my next doctor.
Here's to relief!
Beth
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Morning Beth,
Diet only and zero medications. I was never into meds but sure did do my share of supplements which really did me more harm than good. Another story in itself but let's just say Black Cohash and fibroids do not mix - they accelerate growth.
Anyway, I was taking 12 Asacol per day, 4 Lomotil and 3 Robinol Forte and when it got to that point and I was not seeing much relief - the Robinol addition did help some - I threw in the towel and went to diet only. Much better with just diet.
Not really sure what has prompted the reverse the last # of weeks but I do know nuts was one culprit that is now totally out of the diet. Closely watching all factors but one that will not be included is meds.
You take care of yourself and hopefully this thread may have some clues for both of us.
Love, Maggie
Diet only and zero medications. I was never into meds but sure did do my share of supplements which really did me more harm than good. Another story in itself but let's just say Black Cohash and fibroids do not mix - they accelerate growth.
Anyway, I was taking 12 Asacol per day, 4 Lomotil and 3 Robinol Forte and when it got to that point and I was not seeing much relief - the Robinol addition did help some - I threw in the towel and went to diet only. Much better with just diet.
Not really sure what has prompted the reverse the last # of weeks but I do know nuts was one culprit that is now totally out of the diet. Closely watching all factors but one that will not be included is meds.
You take care of yourself and hopefully this thread may have some clues for both of us.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!