Hi! Boy am I ever happy to have found this site! I have learned more about MC in my last few hours of reading than I have from all other sources including my doctors.
I was diagnosis end with CM this past fall after months of non-stop diarrhea. The first treatment was Budesonide (9mg) and a high dose of Pepto- Bismol. After 2 months of this with little change they added azathioprine. I took that for 1 week and I fact saw improvement in my stools but unfortunately I also felt like I had the flu. They told me to stop taking the azathioprine because they thought it was a drug reaction. They also said I could take Imodium. At this time I was taking Imodium and the budesonide daily but if I stopped the Imodium the diarrhea was back with a vengeance. In the beginning of July they took me off the budesonide and put me on Lialda(3.6g). So far no change has occurred and if I don't take Imodium I have diarrhea many times a day.
In June when I wasn't seeing results from the budesonide I went to a chiropractor that was able to help several people I know with their digestive issues. She had me do some stool testing and then put me on several Metagenics products. It seemed to me that this somewhat helped but not without the Imodium.
I have looked around the site and I haven't see any posts where others have tried the Metegenics products. I'm wondering if anyone knows about them or if I should quit taking them? The products I'm taking are UltraInflamX Plus 360, some probiotics, and Dynamic Fruits and Greens.
I'm feeling very frustrated because when I first when to the doctor made it sound like this wasn't anything to be too concerned about, just a nusence. Now I'm thinking otherwise.
If I take a few Imodium every day my diarrhea seems pretty under control. Is it okay to take Imodium forever? I've taken so much and keep thinking this can't be good and there must be a better way.
It does sound like I need to do some big dietary changes. I wonder why my doctors said that wouldn't make a difference?
Thanks reading this and I appreciate any comments about my current treatment.
Newbee
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hello O,
Welcome to our Internet family.
The key to resolving the symptoms of MC and healing our digestive system is not taking drugs or fancy supplements — it's avoiding the foods and drugs that are perpetuating the symptoms and boosting our immune system by taking Vitamin D and magnesium. It's that simple. Of course, unfortunately that's much easier said than done, but in a nutshell, that's how we get our life (and our health) back.
The gastroenterologists continue to deny that diet has anything to do with the disease because no researchers have published the research needed to verify that the inflammation is due to antibodies produced by immune system reactions to certain foods (and to certain drugs). So in the absence of scientific proof, the GI docs continue to make the same mistaken assumption that they have made ever since the disease was first described, roughly 40 years ago. They have no significant medical school training on diet and nutrition, so naturally they assume that diet has nothing to do with the disease. They are trained to write prescriptions for drugs, they are not trained to understand dietary issues.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family.
The key to resolving the symptoms of MC and healing our digestive system is not taking drugs or fancy supplements — it's avoiding the foods and drugs that are perpetuating the symptoms and boosting our immune system by taking Vitamin D and magnesium. It's that simple. Of course, unfortunately that's much easier said than done, but in a nutshell, that's how we get our life (and our health) back.
The gastroenterologists continue to deny that diet has anything to do with the disease because no researchers have published the research needed to verify that the inflammation is due to antibodies produced by immune system reactions to certain foods (and to certain drugs). So in the absence of scientific proof, the GI docs continue to make the same mistaken assumption that they have made ever since the disease was first described, roughly 40 years ago. They have no significant medical school training on diet and nutrition, so naturally they assume that diet has nothing to do with the disease. They are trained to write prescriptions for drugs, they are not trained to understand dietary issues.
Again, welcome aboard, and please feel free to ask anything.
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.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
hi there
welcome to our group - and sympathies that you had to find us
Re the Metagenics products - these are a very good quality range, but maybe not the ideal approach at the early stage of MC healing
what you have been provided is a good treatment protocol for IBS /gut issues. What we have found from various discussions over the past 10 years on this forum, what works for other IBDs doesnt necessarily work for MC.
As you do more reading of posts and discussions, you will see that a bland eating plan, Vit D3 and magnesium are your best starting points for calming inflammation and encouraging healing. we have prepared some guidelines here:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=79
gluten free and dairy free is a great start, if you read the eating plan stage 1 in the guidelines, you will see that we encourage bland, well cooked meals, on a small base of ingredients, and minimal processed items
keep reading various topics and discussions! check out the success stories area, this will give you an indicator of what others did, and how long it took
take the time to read the items in the guidelines, as it is a good summary of what to expect and what works..
hope this helps
welcome to our group - and sympathies that you had to find us
Re the Metagenics products - these are a very good quality range, but maybe not the ideal approach at the early stage of MC healing
what you have been provided is a good treatment protocol for IBS /gut issues. What we have found from various discussions over the past 10 years on this forum, what works for other IBDs doesnt necessarily work for MC.
As you do more reading of posts and discussions, you will see that a bland eating plan, Vit D3 and magnesium are your best starting points for calming inflammation and encouraging healing. we have prepared some guidelines here:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=79
gluten free and dairy free is a great start, if you read the eating plan stage 1 in the guidelines, you will see that we encourage bland, well cooked meals, on a small base of ingredients, and minimal processed items
keep reading various topics and discussions! check out the success stories area, this will give you an indicator of what others did, and how long it took
take the time to read the items in the guidelines, as it is a good summary of what to expect and what works..
hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I forgot to address this in my previous post. The reason why certain doctors regard this disease as a nuisance disease is because they don't understand it and they don't know how to treat it. Therefore, it's just a nuisance to them. And since they don't understand it and they don't know how to treat it, naturally they're not concerned about it. If they were actually concerned, they would go to the trouble of learning more about the disease.O wrote:I'm feeling very frustrated because when I first when to the doctor made it sound like this wasn't anything to be too concerned about, just a nusence. Now I'm thinking otherwise.
And if they actually had the disease themselves, they would very quickly recognize it as a serious, life-altering disease, the same way that most MC patients think of it.
In defense of your doctor though, the real reason why they use that term is because it's an offshoot of a doctorspeak term for a disease that is not fatal. Non-fatal diseases are considered to be benign, and some doctors tend to trivialize certain benign diseases by referring to them as nuisance diseases. But they should know better than to use that term when describing the disease to a patient who is suffering from it. And as long as they continue to mislead patients that way, I'll continue to stick to my first explanation.
I see that Gabes has directed you to some information that can help you to get started selecting foods for a recovery diet that will allow your digestive system to heal.
Imodium is generally recognized as a very safe medication for long-term use, as needed. For most people, it's generally safe to take up to 8 per day, if needed. It doesn't really prevent diarrhea, but it helps to slow down motility so that you can absorb a few more nutrients from your food, and it can alter trips to the bathroom by changing them from emergency dashes that may end in disaster, to being able to walk to the bathroom and still make it in time.
Many members use it while they are recovering, when they have to go to a meeting, or take a trip, where they will be unable to quickly gain access to a bathroom.But don't take more than is actually needed, because it's possible to cause constipation problems. As the diet changes allow your intestines to heal, you won't need to rely on Imodium as much, and eventually you shouldn't need it at all.
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.
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brendaragland
- Posts: 16
- Joined: Sat Jun 04, 2016 11:21 am
Welcome. Just wanted to say hello and welcome to the best and only MC information highway. Since most doctors are, yes, ignorant about our disease we rely on each others experiences and advise to accept the life altering changes that need to be made. I just recently, after being diagnosed 3 years ago, have began to accept and learn what I need to know to live with this disease. I've done the steroids and other meds without any lasting results. Now I'm working on eliminating as much "triggers" as possible. And I have a lot of them. Since I'm in a full flare up, I'm cooking bone broth today and with rice and a few other safe foods for a long. Three years without any remission I figure it will take awhile for the healing to commence.
Research, research and more research.
Lots of luck and we're here to help.
Research, research and more research.
Lots of luck and we're here to help.
Brenda Ragland
Hello, O!
Agree with everyone here. Having an MC diagnosis is totally life-changing in every way. My doctor told me the same things yours did. That's difficult to get a handle on, as most of us have grown up to respect the authority of the medical profession. For many of us, symptoms have already been changing our life for some time prior to even getting a diagnosis!
This board and the amazing group of people here are also life-changing. They understand because they too have MC. They are my heroes. They will support you, encourage you, give you new ways of thinking and different strategies to try on your individual road to healing; they will laugh and cry with you. They will listen and open up their hearts to you, and they will NEVER judge you.
My advice is to use this board as fully as possible, and ask every question you can. It's been mentioned before and I find it fascinating that perhaps another reason members here are so close is not only do we share having MC, we also share many of the same personality traits (high achievers, often hard on ourselves, etc.) that may have inadvertently added to the many other factors leading to having this condition.
The search function above is also extremely helpful! Oh, and I have used Metagenics products recommended by my naturopathic doctor, and they seem to be a good quality. Can't speak to the specific ones you mentioned though. Again, welcome!
~ Holly
Agree with everyone here. Having an MC diagnosis is totally life-changing in every way. My doctor told me the same things yours did. That's difficult to get a handle on, as most of us have grown up to respect the authority of the medical profession. For many of us, symptoms have already been changing our life for some time prior to even getting a diagnosis!
This board and the amazing group of people here are also life-changing. They understand because they too have MC. They are my heroes. They will support you, encourage you, give you new ways of thinking and different strategies to try on your individual road to healing; they will laugh and cry with you. They will listen and open up their hearts to you, and they will NEVER judge you.
My advice is to use this board as fully as possible, and ask every question you can. It's been mentioned before and I find it fascinating that perhaps another reason members here are so close is not only do we share having MC, we also share many of the same personality traits (high achievers, often hard on ourselves, etc.) that may have inadvertently added to the many other factors leading to having this condition.
The search function above is also extremely helpful! Oh, and I have used Metagenics products recommended by my naturopathic doctor, and they seem to be a good quality. Can't speak to the specific ones you mentioned though. Again, welcome!
~ Holly
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"