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Im a believer in herbs now! Herbs that helped me

Hello this is my first post although Ive lurked on the site for about a year. I guess I should start with my history. I was diagnosed with crohns 12 years ago. I had the initial flare resulting in a week stay in the hospital. I went thru the basic drugs prednisone, imuran, entocort, etc. Those really didnt help. I eventually ended up going for emergency surgery removing 12 inches of intestines. I got down to 116lbs. @ 5'9". After the surgery I went on Remicade. I went into remission. That brings me to this year. Well really starting last October I started into another flare up. My weight was 160lbs. Ok by May of 2012 I was almost at bottom. My weight was down to 135lbs. Fatigue was killing me I couldnt hardly work my job much less go to gym. I felt like Remicade would help but the side effects and costs just wasnt worth it. So my theory was this. If remicade worked by lowering tnf alpha. I would research herbs that lowered tnf-alpha. So I looked those herbs up and gave them a try. Well I still cant believe it but it has helped. My weight is up to 155lbs. Even more incredible is how much my fatigue had improved. I feel like going to the gym. I still have diarrheah but probably cut in half. I think im back in remission. I know everyones disease is different so results may be different for others. I just felt my results were so good the herbs I tried were definitely worth listing.
Here they are:
CLA
Marshmallow Root
Turmeric Root 95% CURCUMIN
Cats Claw
Quercetin
Boswellia
Boron Chelate
Ginger Root
CoQ-10
Stinging Nettle Leaf
Ashwagandha
FishSMART Ultra enteric coated softgels
vitamin D3 5000ius
Vitamin b12
Im still amazed at my improvement. I wasnt really a believer in herbs but I am now. I feel i should add that these are the only things Im taking. Im not on any prescription meds for crohns. I hope you guys can benefit from this info.
 
Thanks so much for all the info. We also are believers of herbs and such. Have been for years.:D
My family and I are on what's called clean eating diet. To sum it up, it's organic eating with a few rules. We've notice such a change in ALL of us. My Grace is still having issues but this diet is still great for her health.

So let me ask what everyone is thinking! :shifty:Are you still under a GI care and having regular check ups?:heart:
 
Im not seeing my gi but I see an integrative medicine Dr. once a month. I also forgot to add Im also taking Garden of Life Raw Probiotics for men.
 
Hey we take those same probiotics also. Love them!

Now excuse my dumbness:ybatty: when I ask you what a interrogative medicine doctor is?:)
 
An intergrative dr. combines conventional methods with proven alternative medicine. I guess a good example was my doctors willingness to try LDN. I dont think my GI would have been willing to try it.
 
Wow, that's great about the LDN.
I guess that's what my doc is called. I just never new the name for him before.
My doc is retiring soon. He's the only one in are area that does this. SAD!

I hope all goes well for you.
Please look around the forum. Lots of people do different treatments (Diet or Meds) for their IBD.
Perhaps you could add too or gain some new insight.
 
Thanks for the helpful information.

I also noticed that when I take half of my normal amount of curcumin, ginger, and astaxanthin I have hip pain that I do not otherwise have

For pain related to inflammation, you really cannot find anything safer or more effective than the many helpful herbs that are readily available.

Dan
 
so are you using all of these at once?
thing is, how do we know which one is helping or not? any clues?
i recall some research that suggested CLA could be good for ibd.

glad these are helping you.
 
so are you using all of these at once?
thing is, how do we know which one is helping or not? any clues?
i recall some research that suggested CLA could be good for ibd.

glad these are helping you.
I am taking all these at once. Your right I cant really say which ones are providing the most benefits. At the time my goal was to lower inflammation as quick as possible which Ithink the combination did. If I found a study that linked an herb to lowering tnf alpha thats one I would use.
 
Very interesting. Great job of taking the initiative and trying something totally new! Such simple ingredients, I wish more people would try it and report back... Seems like you and Bergy are on to something.
 
I have also used many of the herbs or natural medicines that 'rlslmshdy" listed above since 1991. I also do not use prescription medications because I didn't like feeling sick from them on top of being sick from the Crohns. I basically did something similar to "rlslmshdy" by trying many natural proven anti-inflammatories. The information I got from a book called:
" Prescription for nutritional Healing". It has specific reccommendations for Crohns disease & that is what I have been using since 1991.

My current list includes:
L-Glutamine
Digestive Enzyme with Duodenal Glandular / Liver extract
Aloe Vera Gel (anti-inflammatory)
Evening Primrose Oil
Boswellia (anti-inflammatory)
Vit D3
Good Multi-vitamin
Lecithin
Healthy eating= NO milk - I use Almond Milk instead

The web has some limited info on Crohns studies & natural medicines. Here is an interesting link with information.
http://www.livestrong.com/article/347726-the-best-supplements-for-colitis/

A natural approach really does work, but it does take discipline. Keep in mind that there is no cure for Crohns but you can keep it under control for the most part without prescription meds. There is so much more info in the book.
 
One thing that caught my eye from Avery's list is Aloe Vera Gel. My girl and I use this and WOW what a different for me. Grace hasn't shown much change but she just started it a week ago, so I'm still hoping.
 
Turmeric that 'rlslmshdy" listed
I also get from eating Curry a few times a month. My daughter uses the turmeric caps. There have been many studies on turmeric and Digestive disorders that look promising.
 
I'm curious to know whether anyone has tried Slippery Elm powder? It is usually mixed with water and drunk and I believe has a similar effect to Aloe Vera juice.
 
While herbals can definitely work for some people I'd be a little leery of claims that herbals have removed your need for meds. We all know that Crohn's can be cyclical and can also sometimes go into unexplained and extended remission (I had one for 7 years), which complicates self trials with a sample size of one...

Stay vigilant out there and don't take yourself off of meds that are working unless the side effects are literally killing you...
 
Muppet I appreciate your comment, though again I will mention that I have not used ANY PRESCRIPTION MEDICATIONS since 1991. My crohns is not cured, but I have MAINTAINED CROHNS WITHOUT PRESCRIPTIONS. I still have symptoms at times but they are usually minor. I have gone up to 1yr to 2 yrs without a major flareup. Herbs are only a part of my treatment. Food is probably the most important treatment for Crohns. Supplements are another very important treatment since our intestines dont absorb all the nutrients from the foods we eat. It is not as easy as taking some prescription pills. It takes much more effort and it is not easy & eating the right foods takes discipline, but it is attainable. I am able to do it & so have others. Of course if someone is on a prescription they should not just stop it abruptly, since they might have a flareup. They should learn about natural treatments first and then start applying some of it & see how they feel. The book I mentioned is what I base my treatments on since 1991.
" Prescription For Nutritional Healing ". I can tell you from my experience these past 20 yrs that I have no regrets going natural.
 
You can't maintain a Crohn's remission with herbals. It's fantasy. Sorry. No well corroborated study supports this.

I'm glad you've had such a long remission, and maybe your condition is just mild which is also a godsend, but preaching to people that they should go off their meds even gradually in pursuit of this nonsense is irresponsible.

I agree that diet is a major component and that a remission can even be maintained with diet, to a point. For some longer than others, and for a very rare few maybe indefinitely.

If you want to advocate for this sort of thing, you should post peer reviewed study, not self help books, as sources.
 
Muppet, My condition has remained relatively mild because of a natural approach. I still have symptoms from time to time & thats when I stup up the treatments, as I said it is not easy. There are studies that have been done on many of the treatments I mentioned. I didnt invent these treatments myself, I learned them from someone else (Experts). If you only listen to a Medical Doctor you probably will never hear anything about natural treatments. Doctors are not trained in nutritional healing. They get more income from prescribing medications, which has helped many people to some degree. Natural Medicine is not a fantasy, you should be more open minded.
 
There are no well corroborated, peer-reviewed studies that support herbal remedies for Crohn's in isolation and very few small studies that even address using them to supplement medications. The most widely available sources for these remedies are self help books written by gurus and people who want to sell self help books.

Desperate people come here trying to save their children, and muddying the water by trying to conflate self help guru mumbo jumbo with research is irresponsible.

Saying that medical doctors are not trained in nutrition or aware of nutritional healing is utter nonsense. There are lousy gastro docs and excellent gastro docs just as with any other profession. Accusing doctors of profiteering by prescribing medications... wow. Not my doctors. Maybe yours.
 
Muppet The Book " Prescription For Nutritional Healing "
is co-written by an Medical Doctor, Dr. James F. Balch. and his late wife a Nutritionist, Phyllis A. Balch. The Book uses conventional medicine along with alternative medicine. I chose to only use the Alternative side. Of course MDs are aware of nutrition, but how many actually recommend it & actually know enough about nutrition. Most MDs prescribe synthetic medications, not recommend nutrition or nutritional medicine, as a complementary treatment.
 
A book by a doctor is not a peer reviewed piece of science. Its some guy's relatively unexamined opinion. To hold it up as a cited source is a logically fallacious appeal to authority unless the authors themselves reference vetted research for all of their claims.
 
As an alternative practitioner and clinical hypnotherapist, who has worked with medical doctors (who believe in alternative therapies) I must say that a REAL reason that ANY therapy works is that the patient/client believes in the therapy. So, Muppet, if you think alternative therapies hold no water, they will not...ever! (And that is perfectly okay.) However, if Avery believes in alternative therapies, they will have a better chance of being effective in his body. Since all healing is affected by our thoughts and our stress levels (or lack thereof) if a therapy causes more stress, it will aggravate our disease. I have worked with clients who did wonderfully on herbal and homeopathic therapies. Others only got results from pharmaceutical therapies. Others have done amazingly well (and achieved remission) through hypnotherapy and meditation practices ONLY. It is a, completely, individualistic issue. Please don't allow another's opinions to create more stress in your life...it only exacerbates the symptoms.
Just so you know, I am a new member...joined because my son was, recently, diagnosed with Crohn's and, although I have worked with it in clients, it has become a little more personal and I am hoping to learn more from each of you...while, at the same time, sharing what I have learned.
 
Placebo is very powerful but it won't heal your crohns. You devalue the efforts of doctors and researchers everywhere, to the community's detriment, when you push nonsense like this. Yes, some herbs are medicinal and positive thought is very therapeutic but no, none of it is as effective as a proper medical and dietary regimen and most of it has not even been proven to work even slightly.

After 3 decades' experience with Crohn's, I've no more patience for snake oil or superstition, especially not when offered as advice to people who are still coming to grips with Crohns and trying to learn.

There is no herbal remedy in the world that rivals medical treatment of Crohns and anybody who says otherwise is selling you something.
 
I agree that there is NO therapy that works better, when Crohn's is in full flare, than the pharmaceutical therapies and diet. It is, as you know, difficult at best, to bring it under control. But once under control, a Crohn's patient has a right to seek something that works best for THEM.

Muppet, I cannot, by any means, have the knowledge or experience with Crohn's that you have...not only in yourself, but with your daughter. I am so sorry that you have experienced that. However, because you have no patience for "snake oil" and, therefore, strongly advise others not to try it..to me, is just as irresponsible as you think I might be. I have, in my 18 years of service, seen incredible results with alternative therapies in Crohn's and IBS. I am not selling anything. I am just sharing my experiences in hopes that it might help others who are hoping for a way to deal with this disease without the unfortunate side affects (which you are strongly aware of) of the pharmaceuticals. I respect your opinion. I hope you can have the foresight to respect others' opinions, too.

Another thing that you might be aware of is that ALL pharmaceuticals come from some sort of herb. In fact, over 95% of pharmaceuticals come from something that is grown here, in the Appalachian Mountains of NC (it is a big income producer for this state.) One reason that pharmaceutical companies do not want us to look at herbs is that they can change, add or take away from the chemical constituents of an herb, package them and sell them for BIG money. It is a fact that pharmaceuticals are approved if they work for (at least) 40% of a population. That means that up to 60% of that population will get no effect, or a negative effect, from that drug. That is considered acceptable by the FDA. The herb, itself, can have the same results and the FDA will not approve it for a drug treatment BECAUSE it is not "standardized." If you would like to know more, review the FDA protocols for drug approvals. There is more to this than you might be aware of. I have worked with physicians for years and I have a healthy respect for, both, allopathic and alternative treatments....they BOTH have their place.
 
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I am not aware of any study that proves there are no herbal remedies that rivals medical treatment of Crohns. Could you provide some info on this?

Thank you

Dan
 
There isn't a one size fits all treatment with Crohn's. Just because something doesn't work for you doesn't mean it isn't going to be useful for someone else. I know desperate people come here seeking answers... no matter how mild or how serious the condition when you are sick and you want answers it's good to have a wealth of information at your fingertips. The path you choose should be chosen carefully and wisely. Some people may be at a point where they feel taking biologics would be like throwing napalm at a simple bug bite. Some people may be at a point where biologics are the clear answer and just need more information. Either way, the alternative therapies that some people use as a sole treatment would greatly benefit people on most medications as supplemental therapy. The main hope I have is that people incorporating alternative therapies with mainstream therapies would have the common sense to investigate whether or not there are negative interactions among whatever it is they are taking.

I'm glad there is so much information on a wide variety of treatments here on Crohn's forum. It promotes critical thinking and curiosity... for me, at least. I wouldn't be here otherwise.
 

Gianni

Moderator
Saying that medical doctors are not trained in nutrition or aware of nutritional healing is utter nonsense.
http://www.nytimes.com/2010/09/16/he...chen.html?_r=0

http://www.naturalnews.com/036702_do...atalities.html

Last year, a bill was introduced in California to mandate that physicians get continuing medical education in nutrition (see Nutrition Education Mandate Introduced for Doctors). Unbelievably, physician trade groups such as the California Medical Association came out in opposition to the bill, which would only require doctors to get a measly 7 hours of nutrition training anytime before 2017 (see Medical Associations Oppose Bill to Mandate Nutrition Training). Read more: http://www.care2.com/greenliving/how...#ixzz28sHp37yh


http://ajcn.nutrition.org/content/83/4/941S.full

There are plenty of other sources. It's a pretty well known fact amongst the medical community and it's critics. Truth is, in undergrad they learn about the body, medical school they learn about medicine. Medicine, medicine and more medicine.

Gianni

Yes, some herbs are medicinal and positive thought is very therapeutic but no, none of it is as effective as a proper medical and dietary regimen and most of it has not even been proven to work even slightly.

After 3 decades' experience with Crohn's, I've no more patience for snake oil or superstition, especially not when offered as advice to people who are still coming to grips with Crohns and trying to learn.

There is no herbal remedy in the world that rivals medical treatment of Crohns and anybody who says otherwise is selling you something.
But pharmaceuticals aren't selling you something?


I believe that nutrition alone can treat crohn's much more effectively than modern medicine, now am I the one selling nutrition?

These medical journals that hold all these peer reviewed studies are all funded by the pharmaceuticals... go ahead open a medical journal and flip through the pages and see just about every advertisement slot taken up by pharmaceuticals. They have an obligation to the pharmaceuticals to report studies that were done by the pharmaceuticals themselves and also reject any studies that would contradict with modern medicine. This is perfectly understandable seeing as medical journals need to make money and pharmaceuticals have a duty to their share holders... what isn't acceptable is misinforming the public on such matters.

To better understand my disease, I didn't ask the doctors that were treating sick patients... no, I searched out the individuals that were living a healthy life even with the disease and didn't need doctors. What I discovered was extraordinary and even more extraordinary were the results I experienced after integrating much of the knowledge I learned from these individuals.

I can tell you haven't researched much on the matter seeing as some modern medicines are derived from herbs themselves but they simply isolate the beneficial component and then preserve it and surround it with half a dozen chemicals. I think in those cases it can be proven that the herb itself would be much more beneficial.


You need to broaden your horizons and just because something isn't on the front cover of Time magazine doesn't mean it holds no merit.

Common sense is far too overlooked in the medical field and much too rare. The common sense that human health has evolved on nutriton and these herbs... Common sense that a 150 year invention that is drugs, makes absolutely no sense for long term health but rather a quick fix. Common sense that doctors do not out smart mother nature but oh how they try. Common sense that we don't know the half about what the human body is capable of.

There is no herbal remedy in the world that rivals medical treatment of Crohns and anybody who says otherwise is selling you something.
Had to quote you again here...

I urge you to go to forbes top 500 grossing companies and browse through the top 100 and count how many pharmaceuticals are on there before you make a pass at a money grubbing alternative health Industry.

As for your studies you were looking for... have a browse through the Journal of Orthomolecular Medicine unless you think they are money grubbers, but then again they have 40 years of articles all for free on the website... interesting.

Gianni
 
This is so great that we can come hear a debate things such as these.

So I will add my my two cents. Keep in mind, my daughter is undiagnosed but has something. So I speak as a mother!

We (my family) are HUGE believers in natural remedies.
My doc is a homeopathic doctor that willing give mainstream meds if need be.
He always give the options and tells us the pro and cons to each. There are times when he puts us on reg. meds because he see's that this need to be "fixed" right away.

Now with that said!!! Some have asked to show studies stating the results of their findings of herbs and such that have healing powers. Well my ulcer flares up and I take Aloe Vera Gel and the pain is gone. I never once CARED if it was in a medical journal or what some big overpriced Doctor said about it. It work ed for ME!!!

Think about this simple fact.
How long has man been here????
How long have we had these drug companies and their medicine that they put out????

You'll find that the numbers are very different right???

Now with that said. I give my Grace every advantage I can with vitamins and herbs but.... If it comes to the point of needing meds other than Zantack, because Aloe Vera does not work for her, I will give it. I will happily crawl through hell it's self to get the best treatment for her.

She however will never go without seeing a GI or Doctor to make sure her health is at the best it can be. I think it would be FOOLISH for ANYONE here to go without making sure their IBD is controlled!

BTW we've never taken thought to snake oil!!!!! I wonder if theirs any health benifit to it.:lol2:

Again just my Farm wife opinion on things.:rosette2:
 
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It's not a debate when you're waving your hands and making shadowy references to some grand pharma conspiracy while offering no evidence based data for your own claims.

There is not one single competent, well corroborated study on the benefit of any sort of herbal remedy for Crohn's. Not even one. Not one single herbal compound has been approved by the FDA for use with Crohn's. Not one single scholarly institution has endorsed any herbal Crohn's remedy. Are they all "in" on it?

Let's base our care of ourselves and our kids on evidence, science, and reality instead of tinfoil hat wearing and new age quackery.

"My opinions are as good as your facts" is not any more valid here than it ever has been anywhere else. You can go on the longest diatribe you like, but until you cite a single credible, peer-reviewed, corroborated source, you've got nothing, folks. Stop telling people to put their kids on this crap. You're dealing with people's lives, and you need to stop peddling superstition and ignorance to people who don't know better.

I do agree that there may be some merit to certain compounds having a positive effect as a supplement to medical care. I've had luck with certain things myself, but I also understand that I am a sample size of one, and that remission, delayed manifestation of effects, uncontrolled outside variables, and many other issues will contribute to the results I think I'm seeing. This is why research is valuable and anecdote is not. However, if you're peddling herbals as a replacement for any sort of drug regimen, you are contributing to someone's risk of morbidity for themselves or their children if God forbid they believe you.

Name one other scholarly institution, hospital, or publication that has ever endorsed or cited the journal of orthomolecular medicine. It's not enough simply to publish your own book and call it a journal. There are standards for peer review that I find it very unlikely they've met.
 
She however will never go without seeing a GI or Doctor to make sure her health is at the best it can be. I think it would be FOOLISH for ANYONE here to go without making sure their IBD is controlled!
QUOTE]

Muppet,

I was NOT!!!!!!!! stating that I would NEVER have my little girl who is MY LIFE ever go without medical treatment with meds. Whatever it maybe down the road, I will travel it with her.
But my opinion is their is a place for medicine and herd in our life. I am no way PUSHING you or yours in that direction!!!!
So attacking me and other parents that want what's best for our kids heath is not the way to go!!!

My opinion is not as damaging as yours stating that Parents who do natural remedies is purposely risking their kids life.

Now if you don't mind, I think that's a great idea about making a hat out of tinfoil.:rosette2:
 
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I wasn't only addressing you. There are about 5 participants in this thread.

I'm glad we agree that doctors and medications need to be part of the formula. It's dangerous when people say otherwise.

And for the record, I've got a bottle of Aloe Vera juice in my fridge right now. :p
 
Well now Muppet you just made my feel bad.:yfaint:
Ask around, I'm not usually so abrupt in words.
Well :shifty-t:Except to crohnsinct, she's just fun to pick on.:ylol:
I'll just have to send you a case of Aloe Vera Gel for Christmas.
Again thanks for the idea of the tinfoil hat!:thumleft:
 
You can't maintain a Crohn's remission with herbals. It's fantasy. Sorry. No well corroborated study supports this.

Just because a study has not been done regarding using herbals as a sole treatment does not mean it cannot work for a lasting remission. Absence of a study only proves that no studies have been done concerning the subject matter. There are no studies proving it cannot work either. Lack of a study on gravity does not make gravity a fantasy. It has its effect either way.

I do not know of any pharmaceutical product that routinely produces a permanent remission either. If you have studies proving otherwise, I have never seen them. This forum is full of people that have had their medication either never work, or stop working after months or years of use. Many of the medications were not even designed for Crohn's, they are anti-rejection drugs for organ transplant patients, or for some other condition.

Saying that medical doctors are not trained in nutrition or aware of nutritional healing is utter nonsense.

Ask your doctor about what foods or vitamins will help, or make your Crohn's worse. You may get some general information about vitamins you can take, such as vitamin D or Iron, B12 and that is about it. I had to figure out for myself what foods bothered me, and they are unique to me, and no doctor could have even have guessed what they are. No study was available for this either, but it had a dramatic effect on my conditon. I will take the effect, study or no study.


Ask your doctor about useful herbs and most of us will get a blank stare, unless you have a chinese doctor. In that case you will get a lot of information. They have a few thousand year head start on us in that catagory.

When I was in the hospital my room mate had nausea that would not go away no matter what anti-nausea medication they gave him. I asked the nurse if they had any form of ginger available. They did not. The anti-nausea effect of Ginger is probably the most documented property of the herb, but they did not have it, or use it. There is no logical reason not to use a safe, cheap, effective herb as the first line of treatment for nausea in cases like this, rather than a more expensive pharmaceutical product with possible side effects.

If you want to advocate for this sort of thing, you should post peer reviewed study, not self help books, as sources.

I prefer my information from wherever someone finds it. I have a brain, and can decide for myself it I want to try this or that, or research it further, or ignore it alltogether. Everyone else also has this capacity.

Some of the most useful treatment methods I have used for various conditions have come from unlikely sources. Some are generally considered quackery, but work nonetheless. Some also have come from studies such as the antiinflammatory effect of Turmeric and Curcumin. Possibly the most studied herb out there. Literally hundreds of studies available for this one herb alone. Inflammation is a huge componant of Crohns.

There is no herbal remedy in the world that rivals medical treatment of Crohns and anybody who says otherwise is selling you something.

This is obviously an opinion as it is not backed up by a study of any kind, since that appears to be your criterea of what is fact and what is fiction. I also have not seen anyone here that is selling herbal remedies, so that part must just be false alltogether.

I'm glad you've had such a long remission, and maybe your condition is just mild which is also a godsend, but preaching to people that they should go off their meds even gradually in pursuit of this nonsense is irresponsible.

This is a straw man argument that you have made up. They are simply sharing what has worked for them for the possible benefit of others.

In my opinion, it is irresponsible not to share actual Crohn's patient information regarding potential treatment options. No one here has told anyone they should go off their meds, or not use meds. There is probably not a person here that has not either taken meds for Crohn's in the past or present. People use what works for them, whether it is a medication or something else. Nothing illogical about that.

Some people have been through most all of the medications and are still suffering. Should we just write them off because the proper studies have not been done on this or that? I woud rather have many options available to me that have worked for others, rather than fewer.

As far as insulting comments like "tinfoil hats", that is not needed on a Crohn's support site.

Dan
 
D Bergy

:(
As far as the "tin foil" hat comment. Since I'm a mother to two children that like to make crafts :shifty: I thought that would be a good idea. Muppet seams to be a good hearted person and I felt she understood the comment to be humorous. :hug:Muppet if I'm wrong I apologize:shifty: and I have no idea in my simple brain how that can be interpreted as derogatory. I don't want to!:blush:

David correct me if I'm wrong but I thought this was a civil place of understanding and open communication between it's members.
I for one have found this place a Godsend of info and support! I would hate to think new comers think they can not express their opinion because others feel the need to attack. That goes on both sides! Myself included!

So I think that's my que to back out of this thread and Muppet pm if you want to yell at me or if you want the case of aloe versa gel!:)
 
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Gianni

Moderator
Let's base our care of ourselves and our kids on evidence, science, and reality instead of tinfoil hat wearing and new age quackery.
I'll base it off common sense... and going to one extreme of the argument doesn't discredit an alternative treatment "tinfoil hat" as I could easily just as say "mercury as an allopathic treatment" (as it was considered for a long time a perfect medicine). I'll let my kids wear tinfoil hats, you inject them with mercury... let's see whose kids are healthier.

It's not a debate when you're waving your hands and making shadowy references to some grand pharma conspiracy while offering no evidence based data for your own claims.
I've cited the medical journals... go buy one, you will see all the advertisements slots filled with pharma ads. And look at the Forbes 500 and count how many pharmaceuticals we have. Now a simple clever man can put the two together and say hmm... this might not be the most honest way of putting studies together.

Maybe you didn't put it together, but I come from a big business orientated family and I know that Big Pharma companies like Phizer have share holders they need to impress every quarter... and if they don't they lose money that's simple. So do you think they would continue to financially support a medical journal if that medical journal started reviewing the efficacy of herbs that would potentially take business from that pharmaceutical? Of course not... it doesn't take a tinfoil hat wearing individual to figure that one out.

It's also not a debate when you automatically discredit ideas and not entertain the thought...


Stop telling people to put their kids on this crap.
This crap meaning natural compounds? yeah that makes sense, cause that's definitely going the harm them right? Not the harsh medication that have 50 listed side effects, it is the herbs and the nutrients that will harm them... right?

You talk about science showing the efficacy of drugs but you don't use scientific reasoning. Our human proteome (genome) has grown stronger through the evolution on these nutrients and on these herbs... that is the base for human health and most anthropologists studying evolution are absolutely in agreement with this. We know that vitamins and minerals help the Immune system tremendously and humans have been consuming them for millions of years. Now all of a sudden in modern age, we switch our diets to high fats, high sodium, high sugars and we change our system of health to chemicals that our human history has never seen before and that is why we have such side effects with these drugs. If our human ancestry never had seen fruit before and then in modern times we start eating fruit, side effects could occur.

If the body can heal on the outside through a strong immune system, why can it not heal on the inside?

You are defending drugs like it's a perfect end all, but you are talking about a medical community that still is treating the absolute sickest nation in the world. To me it's obvious why we are sick, because we've wandered to far from our ancestral diets and we've put too much trust in unnatural unstable chemicals like drugs.

It makes much more sense to me, rather than trusting "peer reviewing studies" in the sickest nation of the world, to ask and research the people whom are living without the disease, and who do have the disease and are now living healthy lives.

After I did my research, after I talked to these people I decided to doctor myself. I decided to not become powerless to a disease that the doctors explained to be so complicated, but to look at it as a roadblock that a simple lifestyle change would fix.

People need to stop being patients, and start being people.


Name one other scholarly institution, hospital, or publication that has ever endorsed or cited the journal of orthomolecular medicine. It's not enough simply to publish your own book and call it a journal. There are standards for peer review that I find it very unlikely they've met.
You see, you don't open your eyes. It's so easy to let others think for you, but how bout deciding for yourself if things hold merit? Read into the journal. The authors and editors of this journal are doctors, anthropologists, botanists etc etc. These are people that actually care about finding effective treatments, the articles are absolutely free on the website! Read different perspective otherwise you become one dimensional, and that is dangerous my friend.


I'm glad you've had such a long remission, and maybe your condition is just mild which is also a godsend, but preaching to people that they should go off their meds even gradually in pursuit of this nonsense is irresponsible.
This is what the forum is about. Go to the treatment section of the forum, maybe go to humira or remicade and browse through the pages. Now look at the left side of the screen and see how many "worried", "anxious", "scared", "help", tags their are next to each thread. By having a multi dimensional forum, the disease can be attacked from multiple angles.

Like I said, you have to ask the individuals that are in remission, that are healthy with the disease... people like D Bergy and me.

I've been through the medications, Remicade, Humira, Entecort, Prednisone, Pentassa and they didn't work for me. If others are in a similar situation on the thread, are we supposed to watch them fail every medicine?

To me this forum also represents more than finding the best treatment. This forum is about the communal efforts of those suffering to come together and use logic and reason to not only show support but also experience for themselves what treatment is working. If my doctor told me that Humira was the best treatment plan there was (which he did) but a dozen people on this forum told me LDN and the supplementation of certain herbs was much better then it is a no brainer for me whom I trust here.

I'd MUCH rather trust the people who have gone through the disease, who have felt as I have felt, who have lived how I've lived, who have suffered how I've suffered, who've cried how I've cried, who've persevered how I've persevered... rather than a "peer reviewed" study.

Gianni
 
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I'll base it off common sense... and going to one extreme of the argument doesn't discredit an alternative treatment "tinfoil hat" as I could easily just as say "mercury as an allopathic treatment" (as it was considered for a long time a perfect medicine). I'll let my kids wear tinfoil hats, you inject them with mercury... let's see whose kids are healthier.



Gianni

Well I'll be!
Is that what you meant Muppet be saying "tinfoil hat".:rof:
See things are just simplier on the farm.:hug:
 

David

Co-Founder
Staff member
While I see a lot of passion on both sides which is great, I'm starting to see this getting a little bit personal. Passionate debate is wonderful, but please keep it civil. Thanks :)

And remember to take your tnf-a inhibitor. Remicade or boswellia, it doesn't matter to me. ;)
 
Hey David what happens when you click on your boswellia link? It takes me to a PubMed site with this as the tag-cover line:

1992 Mar 18-24;88(12):20-1.

Gagged and bound.

Friend B.
 
Muppet-I believe this forum has helped many but I do not agree that it should be a place for arguing. I think all information is important as everyone's disease is different. Asking questions to further understand someones posts is greatly appreciated but telling someone rudely that their ideas and treatments are not good and shouldn't bo posted is not your place. I would hate to see someone stop posting information that may help others because they feel you have offended them. I would like to continue to read all posts regarding all types of treatment as I think an open mind is always best. This disease is a tricky one and what may work for one will not work for another. It is not our job to judge someone else's treatment plan. With that being said I hope this forum can continue to be a place I fell comfortable expressing my ideas while listening to those of others. :)
 
Medical advice needs to be based on something other than self help books and good vibes.

Your personal experience is valuable but it is also your personal experience. You are not a clinical trial. You are one patient. Your interpretation of your own results is suspect at best, and any 101-level college science course teaches why this is. There are a million variables, and I'm sorry, but there is a reason that formal research exists. Handwaving and scary noises don't detract from that fact. When somebody's kid dies because you told them to chew leaves instead of go to the doctor because of some shadowy conspiracy with the pharmaceutical industry, how smug will you feel then?

Certainly, corporations are in this for the profits. There is no disputing that. To believe that every medical researcher on the planet, or even a majority of them, have been co-opted, is beyond paranoia.

Also, while evidence of a similar mechanism of action between an effective drug therapy and an alternative remedy is interesting, it's not the same as evidence of the two being interchangeable or equally effective.

Just because a study has not been done regarding using herbals as a sole treatment does not mean it cannot work for a lasting remission.
This is true. There is no study for lots of things and that doesn't prove they don't work. Maybe jamming a pen in your ear will cure migraines.

It's one thing to experiment with these things as an experienced Crohn's sufferer with several flares and remissions in your history and a good grasp of first, how to keep your symptoms reasonably in check for your own safety and, second, when to hit the ABORT button and call your doctor. It's entirely another to tell brand new patients, or parents of patients, here, try this unproven untested thing that has worked for me and my mates. The former is a wonderful effort by an--on average--very intelligent community to expand the pool of available knowledge, and the latter is utter lunacy.

And no, Gianna, I am not defending drugs as a perfect end all. You are not reading what I am writing. You are seeing a straw man that I'm not building. Further, putting faith in research and established therapies is not disempowering nor is it allowing one's self to be infantilized in the way that you're implying. I am very proactive in my care and my children's care. I've developed my own dietary modifications, I have the last say in all medications and their dosages and durations. I do hours and hours and hours of research in order to be the best advocate for myself and my children that I can be. To imply that this is somehow a childish or naive approach is nonsensical.

Formal research imposes logic on observations about treatments (or whatever subject) and forces one to prove things before they are documented and before vulnerable patients are subjected to them. How this can be regarded as a negative is beyond me.
 
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I'm not angry at all. If anything I'm worried. Vulnerable people come here for advice. People scared out of their minds either very sick themselves or with very sick kids. I hate to think that they get bombarded with poor advice. I haven't really seen it happen here yet but threads like this are pretty worrisome.

Experimentation with alternate therapies is something personal that each sufferer has a choice to entertain. I've done it and I don't have a problem with experienced people trying it. I have a BIG problem with handing out unvetted, ungrounded advice to scared, desperate people (a demographic this forum sees a fair share of), thereby muddying the waters and greatly increasing their chances of harming themselves or their loved ones.

You're being pithy and dismissive. I'm trying to present a case. So it goes.

(PS I've followed your LDN thread with great interest.)
 

Gianni

Moderator
To believe that every medical researcher on the planet, or even a majority of them, have been co-opted, is beyond paranoia.
I never said this, and I don't believe this.

But just think about how studies are funded... many of them are funded by the pharmaceuticals whether directly or indirectly, go ahead look up a study and scroll to the bottom where they name the funding.

A medical researcher is given a budget to research specific things, they don't get to choose what to research. I'm not sure you understand that.

Its much like if you went to a restaurant and you found out that the restaurant had an "A" health grade, but you also found out that the same restaurant was paying the department of public health (the system of government that gives those health grades). It is a simple conflict of interest so you might be a little weary next time you try that restaurant.

Medical researchers, for the most part, are sincere in their jobs... But you can be sincere and you can be sincerely wrong.


Also, while evidence of a similar mechanism of action between an effective drug therapy and an alternative remedy is interesting, it's not the same as evidence of the two being interchangeable or equally effective.
Yet i'd rather have my child take the one that doesn't list lymphoma as a side effect.


This is true. There is no study for lots of things and that doesn't prove they don't work. Maybe jamming a pen in your ear will cure migraines.
This is your way of discrediting alternative treatments, by poking fun at them. I feel bad for you, I really do. It's this blindness and this stigma that will get you in trouble. There is so much value in interpreting the efficacy of a treatment on your own rather than letting a preconceived notion decide that for you. Leave you dogma at the door.


It's entirely another to tell brand new patients, or parents of patients, here, try this unproven untested thing that has worked for me and my mates.
Many people come on here to seek alternative treatments believe it or not, new and experienced patients alike.

Using harsh chemicals to outsmart mother nature doesn't make sense to many and for those many herbs and nutrition does wonders for them. The body isn't compartmentalized, when one part of the body is ill, the other parts are also ill. So if you take a medication that can cause lymphoma it is safe to say that it isn't benefitting your overall health. Instead the medication is dealing primarily with the symptoms rather than with the underlying cause of the disease. These maintenance medications, in my opinion, are only giving you a false sense of security as the disease itself is still very well there, and now that you have beat down your immune system with these harsh medications the disease is able to advance. Nutrition and herbs deal with the underline cause and rather build up the immune system to help mother nature rather than outsmart it. Our bodies aren't dumb, our immune systems aren't stupid. I believe the immune system is attacking something (which is why it uses inflammation as it does when it fights an infection in a cut) but it isn't strong enough to deal with the problem. So by building up the immune system you can help the body deal with the problem.

Sure maybe this theory doesn't show up in the New England journal of Medicine but it makes much more sense than what the medical community yields crohn's to be.

Common sense is too valuable to replace.

I have a BIG problem with handing out unvetted, ungrounded advice to scared, desperate people
How about logic?

Gianni
 
Yeah. I'm being dismissive of you because you are being dismissive of people going the alternative route. I think you are overreacting and being offensive. If people can't post what they've learned and what has helped them, then where should they go? This is as good of a place as any.

There is a lot of valuable information on ALL types of treatments on this site. That's what makes this place great. The last thing this place needs is intellectual discussion of various treatments to be stifled.
 

David

Co-Founder
Staff member
I'm not angry at all. If anything I'm worried. Vulnerable people come here for advice. People scared out of their minds either very sick themselves or with very sick kids. I hate to think that they get bombarded with poor advice. I haven't really seen it happen here yet but threads like this are pretty worrisome.
If you do see it, please report the post as I hate it as well.

Out of curiosity, do you get as fired up when you see people who are prescribed only medications such as Asacol or Lialda when they have ileal Crohn's Disease?

Yet i'd rather have my child take the one that doesn't list lymphoma as a side effect.
It would be interesting to see how many cases of cancer ended up being reported in a large scale, two year clinical trial of something like Boswellia. I bet more than 0. It would also be fascinating to see what list of less serious side effects would be reported.
 

Gianni

Moderator
It would be interesting to see how many cases of cancer ended up being reported in a large scale, two year clinical trial of something like Boswellia. I bet more than 0. It would also be fascinating to see what list of less serious side effects would be reported.
I bet so too. Of course I wouldn't think the Boswellia would cause the actual cancer but pharmaceuticals are required to put every single side effect reported in that allotted drug trial time. That is why just about every drug has the fatigue side effect :).

organic water would also probably show cancer as a side effect... just about anything could.

Of course you can make the argument that the Remicades and the Humiras also may not have caused the said lymphoma. This is where I feed of off others experiences as well as my own. I felt absolutely horrible while on Humira and got pneumonia three times in just a year. I've also read about others who don't feel good as well as get constant colds etc etc. You don't really see that with nutrients or herbs:)

Personally I feel like these drugs will cause cancers as I personally believe a weakened immune system is susceptible to all cancers and these drugs will lower your immune system. Nutrients and herbs, on the other hand, build up the immune system :D

Gianni
 
If you do see it, please report the post as I hate it as well.

Out of curiosity, do you get as fired up when you see people who are prescribed only medications such as Asacol or Lialda when they have ileal Crohn's Disease?


It would be interesting to see how many cases of cancer ended up being reported in a large scale, two year clinical trial of something like Boswellia. I bet more than 0. It would also be fascinating to see what list of less serious side effects would be reported.
David I tell people to quit their doctors left and right when it's clear that they're receiving poor advice (such as inappropriate prescriptions like you're describing). I suggested it so much last year that it was probably half of my posts over the summer of 2011. There are some crap GI docs out there. I'd even say that the majority of GI docs are basically crap, either through incompetence, apathy, or hubris, and a sharing of doctor experiences and testimonials is a vital part of this forum for that reason. I refuse to take my daughter to any doctor in my state. I drive her 3 hours one way to see her specialist. So, if you're asking me whether I think the advice of a doctor is sacred: no, I don't.

I'm all for experimentation by experienced sufferers with alternative therapies, or for even less experienced sufferers opting into formal trials under the supervision of a competent specialist, but equating folk knowledge with formal medical research is a disservice to the community (and no, not everyone in this thread is guilty of that and I'm not accusing everyone of it.)

ctrl z I don't think that making a clear distinction between anecdote and formal research is stifling discussion. There absolutely should be a place to discuss alternative therapies on this board and I am all for trying the promising ones myself and reporting back too. I don't think that place is in "Your Story" where inexperienced people are asking what to do about someone very very ill, at least not without a healthy dose of qualification. It's not my intention to single anybody out (honestly), but arguments like Gianni is making, that researchers could be wrong and therefore unvetted advice from solitary (or small partnerships) of experts are equally valid, are just wrong. They're wrong logically and medically. You may want to try their advice out for yourself, and that's your prerogative and all well and good. What you should not do is represent to others that peer-reviewed research and expert (for various definitions of expert) advice are on the same plane.

Medical researchers, for the most part, are sincere in their jobs... But you can be sincere and you can be sincerely wrong.
This generalization does not lend any more or less credibility to either medical research or alternative therapies. This is basically a tautology and it would be a logical fallacy to use this as an argument either for or against alternative therapies.

Gianni - A competent gastro will treat your Crohn's holistically WITH appropriate medications (and maybe recommend a supplement or two as well.) If your GI is not considering peripheral medication effects, he or she should not be practicing. I went through 8 GI docs to get to the one I've got now, for this and other reasons. It sounds like you've had negative experiences with doctors who don't value the nutritional component of Crohn's care. Been there, done that. I fired them all.
 
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David

Co-Founder
Staff member
David I tell people to quit their doctors left and right when it's clear that they're receiving poor advice (such as inappropriate prescriptions like you're describing).
:highfive:

I'm all for experimentation by experienced sufferers with alternative therapies, or for even less experienced sufferers opting into formal trials under the supervision of a competent specialist
I'm with you. I think experimenting with only holistic treatments when someone is first diagnosed and knows little about the disease and how it is managed is dangerous unless they have an incredibly competent specialist helping them. Far too often I see people taking the holistic approach and when I ask them how they are monitoring their disease, they aren't. That worries me to no end. Of course, on the other end of the spectrum, managing the disease improperly with prescription medications is just as, if not more dangerous in my opinion. It's so important to get the inflammation under control and mucosal healing as quickly as possible and to maintain that.

Once someone has educated themselves to the point where they can advocate for themselves and truly understand the ins and outs of this disease, then, if they want to try only alternative treatments, then more power to them. If someone wants to try managing the disease entirely with herbs and other supplements, that's fine and I understand that desire. And they'll be monitoring things closely enough where, if it doesn't work, then they know that before serious damage and complications arise and can switch course.

One of the biggest roles of this community is to educate people with the best information we can and as honestly and unbiased as possible. I see bias on both sides of the debate in this thread but it's understandable considering what people here have been through. It's not something we can expect to change though I hope people take a step back and evaluate their biases on occasion and take a more neutral stance while still providing information about what they're passionate about.

My only real problem with any of your statements was,
muppet said:
You can't maintain a Crohn's remission with herbals. It's fantasy. Sorry. No well corroborated study supports this.
This is biased. And if we're speaking of clinical remission which is the easiest form to achieve, it is an incorrect bias.
 

David

Co-Founder
Staff member
When a treatment is not prescribed by the vast majority of doctors, the dominant non profit foundation for a disease says not to use it, and it is literally illegal to merely posses in a majority of locations, it is most definitely alternative.

And either way, it is an herbal.
 
I definitely understand that viewpoint. I mean that medically, I don't think it's really up for debate anymore. The beneficial nature of various cannabis compounds for Crohn's is well established. The fight now is political.

Most (all?) other herbals don't have similar scientific backing (yet).
 

David

Co-Founder
Staff member
My guess is you'll find it's not the greatest study in the world. The Curcumin study is quite interesting, though small. I can affirm that it has helped me and our threads on it here showcase that is has helped others as well.

Almost the entire list the OP has, has scientific backing to some degree. Coupled with medical marijuana, I could absolutely see it helping to maintain clinical remission in some people. It's definitely not for everyone and anyone who tries such an approach (or any approach for that matter) needs to be CLOSELY monitored to make sure it's working.
 
I think the most important thing to remember is that a sample size of one only means so much, so reported successes are great, but remissions are sometimes spontaneous, too. While it's counterintuitive to believe that you went from "OMG I'M DYING" to "Wow, I feel fine", in my own personal (sample size of one) experience, it's not super uncommon, just uncommon. Your attitude and belief that things are going to get better certainly can create tangible results, too.
 

David

Co-Founder
Staff member
You're absolutely correct. Of course, I think that some of the spontaneous remission that is occasionally experienced will one day be shown to be a result of changes in environmental (of which diet is the largest) factors and lifestyle changes that may or may not have been purposely employed.
 
I have not done much research on Boswellia as there are 10 or 20 other things I have going on now.

If you go to Google Scholar and type it in there are a couple of studies or articles (didn't read them) on it.

Much of the info I got on Turmeric is was also found using Google Scholar.

Dan
 
Hi I am new to this forum. I just had to jump in and say a few things. Some background on me is I've had Crohn's/Colitis for the last 16 years, so I know when I'm having a flare or things just aren't right. I've been through the majority of all the meds, pred, Lialda, Pentasa, Remicade, 6-mp, Humira and Cimzia, which i currently on, I am sure there are some others I have missed. I was seen at the Mayo Clinic here in AZ the entire summer, blood work, MRI's, Flex Sig Scope and a full colonoscopy. I had been dealing with a flare since March which was also make my tail bone sore and couldn't sit for any length of time. The MRI's showed nothing as far as the tail bone issue went, so they were at a loss on that one.

In the end they wanted to add Methotrexate along with my Cimzia, because Cimzia was obviously not working. I decided to take a stand and said NO, I need some time to research. So I started my research on Curcumin and found that a large study in Japan had been done and the UofA had received $1 Million grant to advance it's research into the efficacy of curcumin in the treatment of IBD.

I finally, after two months of research, can across a product developed by UCLA and Verdure Sciences. It's called Longvida. The studies done are for Alzheimer's Disease, but I said what the heck. Since the product has the highest absorption rates, which is one of the issues with curcumin. I contacted Sonya Cropper at Verdure Sciences and asked her for more information. Her statement is: Although Longvida is only 20% curcumin, it is 65x more absorbable than other forms of curcumin. Studies have proven this in vivo.

I wouldn't never say this has cured me in any way, but it has made by disease much more manageable and predictable. My tail bone soreness has went away and I can tell there is no inflammation, because lack of mucus and blood. Like I said I still have some issues, but they are minor and I can deal with this.

Thank you for reading! I just wanted to share and please remember to always do your own research.
 

David

Co-Founder
Staff member
Hi mcontreras and welcome :) I'm so pleased to hear you're doing much better, congratulations!
I wouldn't never say this has cured me in any way, but it has made by disease much more manageable and predictable. My tail bone soreness has went away and I can tell there is no inflammation, because lack of mucus and blood. Like I said I still have some issues, but they are minor and I can deal with this.
Please be careful! A lack of mucus and blood in your stool does NOT mean there still isn't the possibility of some inflammation present. And even a low level of inflammation, over time, can lead to scarring and narrowing of your intestines and the complications that arise from that. So if you're not being closely monitored by your GI, please do so :)

Again, welcome!
 
My stool shape and size also play a role is my "do I have a flare". they are nicely formed and not thin at all like they used to be. I do have a GI, but I think sometimes, even though he's a good, Dr he might be in bed with the Pharm companies.

I know I already have scar tissues from the years that I've had the disease and that's not something that can be cured, so I still do have some mild discomfort when I have a BM, but it's not nearly as bad as when I am flaring. I can only say that during a flare and having a BM feels and felt like childbirth contractions at some points. I can deal with mild discomfort, but childbirth contractions.. not so much.

I'll try to keep everyone updated while taking this. I've been on it for two months now and things have improved. Call it whatever you want a coincidence maybe, but whatever it is, I like it.

I still continue to do research on a daily basis, I think it might be my new obsession.:)
 

David

Co-Founder
Staff member
We'd love for you to keep us updated! :) We have a thread located here where others are discussing the use of turmeric / curcumin that you're welcome to take part in, or start your own thread if you prefer that.

Please note that I'm utilizing a supportive tone when I say this as I don't want to upset you, but bowel shape also doesn't rule out the potential that you have some active inflammation. If you aren't completely comfortable with your current GI, find another one :)

And good for you doing your own research, that's wonderful. We'd love for you to share anything worthwhile that you find here on the forum. The more research, the better :)
 
I am just going off my own experience through out the years and FOR ME, no blood, mucus and stool shape and size mean something and how I feel energy wise. I have been able to resume trail running again. My husband has noticed that I don't complain as much either so he know I must be feeling better.

I still limit my intake of sugar and breads and it helps with the weight too.

Not saying that I don't feel uncomfortable about my Dr., but I just have to take a stand and say this is my body and if I want to try other things I should be able to and not feel guilty about doing so. I don't want to live the "what if" life. I want to know that I did and tried what I could for myself.
 
David is right. He's not trying to be contradictory, just lend you some experience. Stool shape, size, ease, and contents, definitely are indicators of our condition, but a return to normal bowel movements does not necessarily indicate remission and you have to be careful or you might learn this the hard way with strictures, fistula, and the resulting complications and surgeries.
 

David

Co-Founder
Staff member
I am just going off my own experience through out the years and FOR ME, no blood, mucus and stool shape and size mean something and how I feel energy wise. I have been able to resume trail running again. My husband has noticed that I don't complain as much either so he know I must be feeling better.
They absolutely mean something! You're obviously doing REALLY WELL and I am so happy for you :) To use metaphor, you had a forest fire going on in your GI tract for awhile there. It sounds like the Curcumin came in with some water dropping helicopters and knocked things down beautifully. The problem with forest fires is, you need some boots on the ground to make sure there aren't any smoldering hot spots. Because, over time, those hot spots can lead to an inferno again.

You mention that you already have some narrowing and that narrowing is due to scarring. That scarring is caused by chronic inflammation. So if you do have a hot spot still, over time, the scarring can get worse and worse until a whole new inferno erupts.

I just have to take a stand and say this is my body and if I want to try other things I should be able to and not feel guilty about doing so. I don't want to live the "what if" life. I want to know that I did and tried what I could for myself.
I agree 100%. I'm not saying go off the Curcumin nor am I even saying take something else. I'm just saying monitor the disease in conjunction with a specialist to make sure you're in deep remission and so you can act quickly if that happens to change. Have those boots on the ground :)
 
I am still on Cimzia by they way. So who knows maybe the Curcumin and Cimzia are working together.... I am sure there are still "hot spots" I just need to give the Curcumin more time to work. I've only been on it for two months. Just like anything else it needs sometime to work, well except pred, that stuff works pretty fast when your in a flare. It is sometimes the necessary evil.

I understand what your saying about scarring in all. I do have an appt with my GI in January. I wanted to hold off seeing him until I had some type of results from the Curcumin. I've been dealing with this for the past 16 years and I know when it's time to see the Dr. I really appreciate your concern, really I do.
 

Gianni

Moderator
This is basically a tautology and it would be a logical fallacy to use this as an argument either for or against alternative therapies.
You bring up logical fallacy a lot but I don't think you realize that you yourself are using them.

You've showed us a slippery slope.

When somebody's kid dies because you told them to chew leaves

And you've built a straw man to attack

instead of tinfoil hat wearing and new age quackery.
Handwaving and scary noises don't detract from that fact.
 
Giannini cherry picking 2% of my participation in this thread to misrepresent my argument not only doesn't advance the discussion or help anyone, its intellectually dishonest and shows poor character.
 
Peeping back in.


Speaking as a mother!
I just want to state the fact the parent's are not STUPID!
I'm fighting for my girl's future health and if any Doc, person or group said hers a leaf to cure your daughter aliments, I'd laugh and walk away. Most would!
Just like most parents know that over-medicating their kids is not good and would say no!

Our choices of these hellish decisions is hard enough but we as parents just like Muppet knows (read your girls story, AMAZING and both girls are cute as a bug) are ones that have to be made. I believe whatever choice we choose to make is and will always be more research then most because we make these decisions for an innocent child.

So to make parents who might come here in disappear and desperation to be ......unschooled to make the call is....... wrong and insulting.
Now I like Muppet but I don't agree with him on a lot of his view points on this subject but now reading his girl's story; I see where he's coming from.
I will do my research on how best to help Grace through or over what's ailing her. If that's natural...good, if meds than fine also.
I would and most parent would never try to put their children in danger.


I'm just saying don't treat parents like idiots. Our kids do that enough!:rof:
 

DustyKat

Super Moderator
Interesting thread and opinions. :) So I will give my two cents worth...

I have no issue with any path someone chooses to follow provided the discussion remains respectful.

I hear your concerns as a parent muppet and I also hear the concerns of those that are dealing with this as the sufferer. At times I have cringed at advice given on this forum and that cringing has encompassed both traditional and non traditional methods of treatment. I personally am adverse to having either route touted as the one and only way of dealing with this disease.

To me, no matter what the disease, it is never as simple take x and y and all will be magically solved. I would hazard a guess and say all disease, to be treated in an efficient manner and to achieve positive outcomes, requires some soul searching and change on a person's part. That change may include diet, supplements, exercise and so on and it matters not how that change was effected but that it is a contributing factor to well being. So with that said I am one that, at present, believes in a blending of treatments.

I would be lying though if I said I didn't want to believe that the all natural route was the way to go. I wish with all my heart that it was but I am fearful of what this disease is capable of so I look to traditional medicine to allay those fears. Both of my children have had a severe and uncompromising journey and it is difficult to let go of what saved them even though I hate and fear it too.

Due to the experiences I have had there is one aspect of this disease in particular that I am wary of and that is disease that is untreated or under treated. Inflammation that is left to simmer away is an insidious and dangerous thing and no matter what course you take my advice is to always ensure that you remain vigilant in monitoring what is happening with your body. The physical signs that you see yourself are but one way do this but they must be backed up by clinical evidence in the form of tests and scoping.

At the end of the day...always keep an open mind and be honest and true to yourself. No matter what treatment you are on, traditional or non traditional, do not be blinded by dogmatic belief and be prepared to change tack if things aren't going according to plan.

Dusty. xxx
 
Leave it up to Dusty to be the voice of reason and ruin the party!:ybatty:

Darn you Aussie!!!:voodoo:


:hug:No one says it like Dusty
 
Of course we'd all prefer to believe that natural remedies that aren't scary lab created chemicals will someday be the best remedies. Unfortunately aspirations don't cure scarred up colons, though. It's important to maintain some reasonable degree of objectivity.
 
I have no preference to treatment. It is all risk vs reward.

I have used the most obscure treatments along with the most standard ones.

I have both suffered and benefitted from both.

Weight everything for your given situation. It is about all it boils down to

Dan
 

Gianni

Moderator
Giannini cherry picking 2% of my participation in this thread to misrepresent my argument not only doesn't advance the discussion or help anyone, its intellectually dishonest and shows poor character.
Are you kidding? You just did the same exact thing in your last post to me. But I'm not allowed to do the same? That sounds like a logical fallacy in itself or is that just hypocrisy?

No what doesn't advance the thread is the insulting comments like "tin foil hats".

Coming into an alternative therapy thread poking fun at alternative treatments and insulting the efficacy doesn't advance a discussion and absolutely shows poor character.

I was pointing out that you were contradicting your own self as constructive criticism. No need to feel like you are backed up against the wall and have to throw out more insults.

That is all, I'm not going to go on any further... you obviously have your ideas, I have mine. Let's leave it at that before things get ugly.

Gianni*
 
"My opinions are as good as your facts" is not any more valid here than it ever has been anywhere else. You can go on the longest diatribe you like, but until you cite a single credible, peer-reviewed, corroborated source, you've got nothing, folks. Stop telling people to put their kids on this crap. You're dealing with people's lives, and you need to stop peddling superstition and ignorance to people who don't know better.
i agree with you that no one should try to turn people away from drugs that could help them.

But i disagree that individuals observing the world around happening in real time, are unable to make good and true observations about how the world may work and that only academic institutions are priviliged with supreme knowledge, this is not the case. I believe all testimony has value, whether it be one from an expert scientist, or that of a novice, but i will put more weight on an expert scientist. expertise comes with first hand experiance, which we all have,so we all have some degree of expertise.

we should all share our experiances and observations, but note that the anecdotal claims and casual observations are the least reliable when compared to knowledge gained through the scrutiny of scientific method.
 
You can't maintain a Crohn's remission with herbals. It's fantasy. Sorry. No well corroborated study supports this.

I'm glad you've had such a long remission, and maybe your condition is just mild which is also a godsend, but preaching to people that they should go off their meds even gradually in pursuit of this nonsense is irresponsible.

I agree that diet is a major component and that a remission can even be maintained with diet, to a point. For some longer than others, and for a very rare few maybe indefinitely.

If you want to advocate for this sort of thing, you should post peer reviewed study, not self help books, as sources.
funny thing about the scientific world is, traditionally they only build upon previous research/reports/testimonys within their own community, and are likely to be unaware of any benefit of herbs. scientists are not going to make observations on how crohns responds to certain herbs, but today things are changing. These reports are more likely to come from people with the disease themselves that are trying these herbs/plants/foods etc. we as a community, much like the scientific community, can attempt to confirm these reports ourselves with a well designed experiment, we are not completely at the mercy of the acedemic institutions.

you are implying that scientists are highly likely to have observed these relationships, its actually very unlikely they would know these things. someone living with the disease may have an advantage by having an in vivo model of the disease in its natural state, something scientists wish they had. its actually not even a model of the disease, its the real thing!! scientists are usually limited to analogous models like mice and rats and cellular activity in un-natural environments like in vitro dishes and models, which can at times be highly inaccurate, and not fully representative of how these cells behave in their natural state.
 
Self observations are riddled with problems. For one, you're not controlling for all variables, in all likelihood (it's extremely difficult). Two, you have an unquestionable bias. Three, you are a sample size of one.

To say that there is no such thing as novel research is to demonstrate a severe ignorance of the industry. If you want to try out alternative stuff, again, as I've said many times, go for it, but don't conflate your amateur, self-directed, self-help efforts with research to the detriment of newcomers who might not know better. That's dishonest and irresponsible.

And demonizing medical research is horribly counterproductive. People are out there working on your behalf to beat this and other terrible diseases and to undermine them with ridiculous criticisms is terrible. Is the pharma industry perfect? Certainly not. Are researchers conspiratory morons with blinders on and their hands out for kickbacks? No, and painting them that way is a great way to cost them philanthropy that may one day result in a cure for your disease.

And no, I never implied that lack of research means lack of potential. Anywhere. Not once. You are projecting that onto me. Of course some of these herbals may be the basis for novel treatments for Crohn's. What I'm saying is that in the absence of formal evidence, it's irresponsible to recommend them to new or uninformed patients for treatment. Why this distinction seems to be lost on some of you I'm not sure. I suspect it's down to the fact that you are rabidly defending your life choices without really understanding what I'm saying beyond that it's criticism, which is really unfortunate.
 

Gianni

Moderator
. Are researchers conspiratory morons with blinders on and their hands out for kickbacks? No,
I'll say this once again, I did not say, I am not saying this, and I will not say this. Once again you are building a false straw man to attack... How bout actually talking about the previous discussion instead of adding your own new twist to each post?

may one day result in a cure for your disease.
Pharmaceuticals will never release a cure, I hope you realize that.



If you want to try out alternative stuff, again, as I've said many times, go for it, but don't conflate your amateur, self-directed, self-help efforts with research to the detriment of newcomers who might not know better. That's dishonest and irresponsible.
You talk like newcomers are extremely naive and lack the investigative powers and the intellect to make decisions for themselves. You are not hearing the overwhelming support that many people give towards alternative treatments and that holds tremendous value and I don't need a columbia med peer reviewed study to tell me the efficacy of that. No one in this disease process makes decisions lightly, and I believe that's what you think is going on. These are victims thrown into a disease process that has scared them and to think that they are just going to choose the easiest treatment or that they won't use investigative knowledge to figure out what treatment plan is best for them is insulting.

We provide knowledge to share on this forum, and with that knowledge comes the endowment for individuals to choose the best treatment plan for them and often that means it will differ from ours. Is that wrong? Absolutely not. If everyone did the same deep medical route or even the same alternative route we wouldn't have diverse pool of knowledge that would give newcomers a perspective from each angle. I don't think giving newbies different perspectives is dangerous at all, but rather gives newcomers a better sense of what they might choose to do, gives them hope, gives the drive, and gives them better know-how to then share their knowledge with the rest of us. You may not listen to these new pools of knowledge but then you are missing out on the invaluable aspect of this forum.

Gianni
 
I'm not saying everyone is naive. I'm saying that if you are going to hand out information in the form of advice, you have a responsibility to couch it in objectivity and full context, otherwise you shouldn't be giving it.

You really need to chill out Gianni, you have a major chip on your shoulder and it colors your interpretation of what I'm saying. It's extremely unproductive and you seem to be deliberately tying the conversation in knots, which doesn't help anybody.
 
Think how long we can make this thread go if we start bring in charts?

Now to the wonderful person that wrote the thread
( ya know the the one written about natural healing).
I hope you know we value your opinion and
hope you keep posting on this forum.:hug:
 

Gianni

Moderator
I'm not saying everyone is naive. I'm saying that if you are going to hand out information in the form of advice, you have a responsibility to couch it in objectivity and full context, otherwise you shouldn't be giving it.
No one is going into Remicade or Humira forums giving advice to stop their treatment and pick up a herb. If you look at the original post, strict information is being given along with personal experience. This information and personal experience is still valuable, is anyone going to read this, drop their meds and pick up a herb in an act of passion? Of course not, but you make it sound like you think people don't put the proper research in backing their decisions.

You really need to chill out Gianni, you have a major chip on your shoulder and it colors your interpretation of what I'm saying. It's extremely unproductive and you seem to be deliberately tying the conversation in knots, which doesn't help anybody.
I think you are reading my posts wrong. The unfortunate thing about text is you can't capture the poster's emotions. My last post was not intended to portray anger in any way (at least not the bottom half).

While yes bickering back and forth does not advance the conversation neither does undermining posts with crude remarks and putting words in other people's mouth, that I do not appreciate.

I appreciate your desire to impart what you believe is right, and I know your heart is in the right place but I think the way you go about it comes off as agressive and demeaning to others and I think we can both agree that is not something newcomers want to see in a forum that is supposed to show support first and foremost.

Gianni
 
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Pharmaceuticals will never release a cure, I hope you realize that.
This is paranoia. Many diseases have been cured or wiped out, and by pharma companies.

While I fully understand where this sentiment comes from, and I DO believe that medical research should be publicly funded for many of the reasons that drive this sentiment, I do not believe that even billion dollar pharma companies could successfully snuff out the work of researchers who found a cure.

Crohn's is simply a very, very difficult thing to cure. It's built into our genetics. It's very very difficult to alter the mechanism of Crohn's without serious consequences. We're not really at the point of routine genetic therapy for humans yet, but we will be.

The trials right now testing chemotherapy followed by stem cell transplantation are pretty damned promising.
 
Muppet and others on this thread,
I am an expert in, by all definitions of the word, healing. I have been working with disease, and the living and dying, on a daily basis, for over 17 years. It is my expert opinion that when one is adamant about convincing the world to agree with him/her, when one feels the need to control the thoughts/feelings/ideology of others, it causes stress. The stress is created in the body and mind of everyone involved in the conversation and, unless there is a healthy avenue of release for that stress or an alleviation of that stressful situation, the stress can cause any number of complications in a disease process.
Disease, or dis-ease, is called such because it is, primarily, caused by stress, which has as much affect on disease as environmental factors. There are several scholarly articles to support my statement...you may search on "stress and disease" for them. Here is one... http://psycnet.apa.org/psycinfo/2009-02126-000/
My concern, here, is that, as a new participant to this forum, I have found my reading of this thread as, particularly, stressful and, even, hateful. In healing any disease, it is always my recommendation to remove yourself from as many stressful situations as possible and put yourself INTO as many supportive, loving situations as possible. This will ALWAYS help facilitate healing. In a disease as chronic as Crohn's, stress is a HUGE factor. (I know I'm not telling most readers, here, anything new.)
All I'm saying is, hey folks, can we temper things down here and, possibly, offer support for one another, without forcing our opinions on others? We are all here to offer information and opinions. Let's respect one another, honor one another and bring the stress levels down to a hum. Please. And a thank you, in advance.
 
Very well put clwisehart!;)

Glad to see you have returned. I'm very intrigued by your profession and many on here are.

Feel free to post a thread on some of your knowledge you've gain on IBD through nutrition and healing.

I can't promise but I would hope that "some" will behave themselves.

This is not a typical thread!:biggrin:

Also we have a wonderful Parents forum for you to post you child's story.
Looking forward to hearing it.:ysmile:
 
Reading this thread, I understand where Muppet us coming from in terms of pseudo-science but I also believe that Gianni is right to be concerned about the financial interests of doctors pharmaceutical companies and the FDA when it comes providing the best care rather than the most profitable.

I think what needs to be said is the standard that Muppet is demanding, peer-review, FDA approval etc. is unlikely to happen when it comes to herbal remedies themselves (rather than a synthetic analog) because it is unlikely that it will ever be in any companies financial interest to pour money into clinical trials and FDA approval to prove that an already easily accessible herbal remedy is an effective treatment for a disease.

This means that, if there are such effective herbal treatments, our best basis for determining which they are is public aggregates of anecdotal evidence such as this forum.

Obviously, one person's story is useless to this end, but a hundred people corroborating that some substance reduces symptoms is meaningful and can be used as the basis of a valid inference that it would be effective on oneself. The knowledge isn't as conclusive as peer reviewed studies but its still good.

I agree that people should not forgo standard medical treatment in favor of a purely herbal remedy (at least not forgo standard medical monitoring), but I also think that this does not mean that well intentioned advocacy for such methods should not be stifled or admonished. This IS the place where we can get the best information about alternative methods because the memberships interests are primarily concerned with providing support and education, and doctors certainly won't provide such information. In the end I believe that poss such as these do far more good than harm.

So anyway, my point is that I understand Muppet's concern, but I believe they are misplaced.
 

David

Co-Founder
Staff member
Welcome to the forum Joey :) Thank you for sharing your thoughts.

Do you or a loved one suffer from IBD?
 

FullM3lt

Activate CB2
Reading this thread, I understand where Muppet us coming from in terms of pseudo-science but I also believe that Gianni is right to be concerned about the financial interests of doctors pharmaceutical companies and the FDA when it comes providing the best care rather than the most profitable.

I think what needs to be said is the standard that Muppet is demanding, peer-review, FDA approval etc. is unlikely to happen when it comes to herbal remedies themselves (rather than a synthetic analog) because it is unlikely that it will ever be in any companies financial interest to pour money into clinical trials and FDA approval to prove that an already easily accessible herbal remedy is an effective treatment for a disease.

This means that, if there are such effective herbal treatments, our best basis for determining which they are is public aggregates of anecdotal evidence such as this forum.

Obviously, one person's story is useless to this end, but a hundred people corroborating that some substance reduces symptoms is meaningful and can be used as the basis of a valid inference that it would be effective on oneself. The knowledge isn't as conclusive as peer reviewed studies but its still good.

I agree that people should not forgo standard medical treatment in favor of a purely herbal remedy (at least not forgo standard medical monitoring), but I also think that this does not mean that well intentioned advocacy for such methods should not be stifled or admonished. This IS the place where we can get the best information about alternative methods because the memberships interests are primarily concerned with providing support and education, and doctors certainly won't provide such information. In the end I believe that poss such as these do far more good than harm.

So anyway, my point is that I understand Muppet's concern, but I believe they are misplaced.
I understand Muppet's concern too...but most people on this board that have gone the alternative route have already tried all the traditional western medications. I know I have.

The pharmaceutical industry helps a LOT of people, but it's also a complete sham in a way.

The FDA is currently conducting trials for a medication called Sativex that mimics the effects of cannabis. So while MM is laughed at now....will it suddenly hold merit if a guy with a white coat can prescribe it for cancer related nausea, MS or IBD? I just don't see the point. When it's all said and done, it comes down to money.

I still get my regular scopes to monitor my disease and I would never go more than 2 years without one.... but I'd rather not continue to take medication that costs thousands of dollars per year with very little increase when it comes to quality of life (again, just my experience).

There is no cure, all medications (natural or pharmaceutical) are essentially managing the symptoms. That's all. If a diet can manage your symptoms, great! If mesalamine or remicade works for you, great! If other options relieve your symptoms and make life liveable...GREAT!

I don't see the point in bickering over what medications we choose to take. Live and let live....we're all built differently. Some of us have great success with traditional medications and some of us have success with alternative methods that are frowned upon.
 
It's semantics, but vocabulary is important when you're giving what borders on medical advice: nothing can be a complete sham "in a way". It's either a complete sham, or it's not a complete sham. The meaning hinges on the definition of "complete". There are no shades of completion, there is complete or not complete.

Anyway, I understand that medications fail some minority of people and once you've been sort of "cut loose" from traditional medicine by failing all of it, there's only so many options. However, while alternative medicine definitely has promise in a lot of areas, I don't agree that ad-hoc, amateur research is on a plane with well regulated, peer reviewed, professionally conducted research. Instead of putting all of our resources into either corporate funded research riddled with conflicts of interest, or backyard research, anecdote, and honestly, a lot of potential for people to stretch the truth or even outright lie, though hopefully not in aggregate, there should be some effort to reform medical research in such a way as to either remove conflicts of interest entirely or create a channel where they are eliminated but where real, rigorous research using proper scientific methods is still conducted.

Desperate people tend towards magical thinking, and many can get very defensive of that thinking even in the face of contrary evidence be it research, statistics, or even first hand results. That's a real danger and it should be something anyone participating in alternative medicine should be aware of every single day and with every single supplement and treatment.
 
Hi David, I do have crohn's. I was diagnosed in 2008 (I believe). It was pretty much unproblematic for years without meds, but I had a flare in September and its ached ever since. Right now I've been looking into treatments that don't involve serious side effects, so I joined this forum.

An aside about fullm3lt's comment about mm and others like it: although I do use it and disagree with the illigalization and criminalization of M, there are sound reasons to be apprehensive of mm from a research methodology point of view.

MM does not really make sense as a MEDICAL unit of treatment. It is composed of hundreds of duffrent compounds, and has very intense (although often pleasant ) side effects. The only really justifiable form of mm, from a research methodology point of view, is isolated compounds derived from M.

This point may be irrelevant to some, but it does justify the medical communities resistance to mm as such.
 
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Great to hear herbs working, I have tried TCM which included many various herbs to make a tea that tasted disgusting but definitely helped me quite a lot
 
Good deal. This is the second time I've seen Cat's Claw listed as a good remedy. I don't have that on my list. The one thing that concerns me is the timing of taking these herbs. I try to spread them out as much as possible so my liver could process everything. In the morning, I take my Imuran with 2 boswellia/turmeric extract caps, 1 L-Glutamine. Lunch = 1 Fish Oil, 3 Curcumin, 4 Rainbow Light supplements. Dinner = 2 Rainbow Light Supplements, 2 boswellia/turmeric.
 
Hello everyone! New to the forum. But been following it for awhile. I do agree with Gianni, as stated above by joeydj87, is misplaced. Muppet needs to re-think the possibility that the current medical practices are the only possible alternatives. As he states he has used some himself. All good advise on the forum.
P.S. that's allot of herbs he is on!
 
Wow havent been here in a while cant believe this thread promotes such strong feelings. I dont understand why people wouldnt at least give them a try for a month. If you will take the time to research it everyone of them I take has a study proving their benefits. Take the CLA for an example their was a study done near me at Virginia Tech. It showed the anti-inflammatory benefits for IBDs. If I found a study showing positive results I figured it was worth a try.
 
Well said FULLM3it. When I see someone denying an actual reality like natural medicine & promoting only traditional medicine it makes me wonder what their true motives are. Many in the medical field might feel that way.

Is that attutude beneficial to anyone on this forum ? What is beneficial is to note specific therapies that was a success in treating your Crohn's disease (Natural or Traditional).

Now I know that natural medicine is not a placebo or magical, because for over 20 years I have been maintaining Crohn's with Natural & Nutritional Medicine- I have never had any operations nor have I used prescription meds since '91. I have had Crohn's since a child, but things got really bad when i was about 25 yrs old. If I continued to eat & drink like I did when I was a youngster I would probably have to undergo drastic medical intervention, which many of you had to experience. Our physical bodies & life exist entirely on the correct nutritional intake, not man-made chemicals. Traditional Medicine has its place & Natural Medicine has its place. We are all here for one specific reason to benefit one another & to LEARN from each other.
 
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