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Starting to get seriously irritated by the propaganda...

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Crohn's Disease
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Posted 4/20/2012 10:11 AM (GMT -5)
...from the 'natural healing' folks. Surely I can't be the only one who's sick of seeing them post in each and every thread, pushing their agenda as surely as a salesman pushes their product on your doorstep? I'm all for people trying non-conventional treatments, if that's what they so desire. But I'm certainly not for them spamming their treatment protocol wholesale across the Crohn's and UC boards. There's no tactful way of putting this, so I'm just gonna say it: I do not think most of these people can have ever had severe UC or Crohn's. They assume their treatment protocol will work for everybody, when it will almost only certainly work for a few or for those with mild cases. I'm freaking sorry, but I do not believe that your LDN, your mineral clay, your chia seeds (or whatever) will work for me where Remicade has failed.

Also, am I the only one to have noticed that such treatment protocols must cost a small fortune? I looked into the price of VSL#3 a long time ago - probiotics are the only supplement I would consider taking - and backed away in horror at the price. That's not including any other supplements. Or the super duper, extra-organic, ultra-virtuous diet, consisting only of grass-fed animals who have their own TVs in their centrally-heated barns. We (as in me and my family) do not eat on the cheap: we buy the best quality ingredients we can afford and yet the average, heavily supplemented, SCD/Paleo/etc. diet would probably take up every last available penny of my modest income.

Or is it that folks who go in for 'natural' healing pay for it by using money they otherwise would have spent on conventional meds? That's a different issue, but admittedly not one I have to worry about, since the NHS pays for my drugs.

Anyway. That's not really the point. The point is that I'm sick and tired of seeing natural treatments pushed so heavily on these boards, often towards newcomers and the desperate. That's most definitely not cool. Like it or loathe it, the conventional meds, in particular the biologics, are the best we have for IBD right now. They are not perfect, but they are a heck of a lot better than nothing at all.
Posted 4/20/2012 10:54 AM (GMT -5)
i agree. My doctor just gave me a lot of samples of the vsl #3 you mentioned and i'm not sure if i'm going to fill the prescription for it.

If these approaches work and they want us to try them, then where are the free samples? If i was able to sign up for a free 90 day sample of one of those things that they talk so much about. i'd try it. But i'm talking, you mail it to me free  and i dont have to put my credit card info in either. If i try it for a few months and it works, then i would probably be a long time customer.

Posted 4/20/2012 10:59 AM (GMT -5)
I know what you are saying and I agree with you to a certain degree. When people post the natural protocol that healed them, it's basically that. This is the protocol they followed and it healed them. I don't think they will assume that everyone will heal if they follow the same footsteps and I think they just want to share their success stories as a form of encouragement.

Alternative methods are expensive and take alot of commitment.

It's fairly obvious, you are upset that the top medications don't work in your case, where in some cases it works wonderfully. If medications would keep you in perfect shape, you probably wouldn't even be here to notice that there are alternative treatments.

And yes, meds is better than nothing at all.
Posted 4/20/2012 11:01 AM (GMT -5)
@somedude- i love your quote LOL
Posted 4/20/2012 11:04 AM (GMT -5)
NiceCupof Tea,

I do agree with you to some extent.  However, I am from the point of trying to find alternative solutions.  I have been on almost every med there is with no sucess.  I have been on Remicade and developed antibodies.  I am on Humira and I don't feel like it is working.  I have done Sulpha drugs, immunosuppressants, anti biotics, TNF, immunosmodulators, etc.  I have been there and done that and nothing seems to help.  The only thing that has helped me was changing my diet to Gluten Free.  I also reduced the amount of chemicals I put in and on my body.

Now I am not saying this will help everyone.  I am not saying go off your meds and do this.  But I can see where some of these people are coming from.  For them the only thing that has helped are natural remidies.  Again, I don't think they should push it down peoples throats...but I am all for educating people on other treatments.

I am glad biologics have worked for you.  Remicade helped me alot before I had to stop it.  I remember having bursts of energy after getting the infusions.  It was great.

Well, that is my 2 cents.  Stepping off my soapbox now.

Posted 4/20/2012 11:14 AM (GMT -5)
I am grateful to those who have posted what works for them. I do think it is hard and very disappointing when meds, standard or alternative don't work. I am disappointed that there are not better and safer meds that work for all of us. Seems like it should be possible.
Posted 4/20/2012 11:20 AM (GMT -5)
@javajay

thank you for explaining that. after i posted that i re-read my post and i wanted to explain a little more. i didnt want anyone to misunderstand me.

i do want to hear about ANYTHING that has worked for ANYONE. anything that has helped or what they have tried and hasn't seemed to help them and why.

what i dont agree with is people posting try this this is what you NEED over and over again.

Posted 4/20/2012 11:42 AM (GMT -5)
If you don't have good insurance, the medication prescribed from a doctor is FAR more expensive than almost all alternative therapies.

I'm not a proponent of "go alternative first", but when I see people going under the knife before trying alternative treatments I cringe a bit. G.I. doctors are trained in surgery and prescription medication. Most are not well versed in diet, and particularly not in alternative therapies.

For many people, these alternative treatments work. For many others, they do not. I personally have had much better luck with alternative treatments than conventional medication, and my issues were very severe (bloody stools 20-30X per day for over 8 years, even with prednisone, hospitalized for anemia, small part of my colon removed, scheduled for entire colonectomy ... which is when I gave up on the doctors' treatment options ).
Posted 4/20/2012 11:50 AM (GMT -5)
@luckylindy

do you mind if i ask what worked for you?
Posted 4/20/2012 1:40 PM (GMT -5)
A few more things...

1) I'm not against alternative treatments and I'm not against people discussing them. The only thing I am against is people spamming their treatment protocols in every thread they post in. That idiot who was posting about clay in literally every single post has ended up influencing at least one person to buy clay. You may think that's a good thing. I would say what's the difference between that and a spammer coming onto the board and advertising a product? Money may not be being made, but such single-minded promotion of commercial products is still preying on the newbies and the desperate. In my opinion.

2) Remicade doesn't work for me. Been on it since the end of last August and have been hospitalised 3 times since then and am looking at a potential ileostomy, so you can see how well it's worked for me. I may be personally disappointed in it, but I respect that it works for the majority of people - 80% according to my consultant. And I do believe it's the best drug we have currently available for Crohn's right now.

3)I'd rather go under the knife rather than spend a lot of time and money experimenting with diets and supplements that may or may not work - and in my case suspect wouldn't. (Besides, even if an ultra strict diet worked, would I enjoy it? No. Would I be totally miserable on it? Almost certainly.) I'm not making the decision lightly. In fact it's been torturing me for months. But ultimately, I am beyond sick of having been sick for years and I'm not prepared to spend even more years faffing around with unproven diets and treatments. That's just me; I would not expect anybody else to follow in my footsteps for a single, solitary second if they did not want to.
Posted 4/20/2012 1:49 PM (GMT -5)
If it's something you can do I think that using a combo of eastern and western treatments can work well. Back in 2006 I did a clinical trial with an herb called Kalmegh and it worked really well for me. When I took this herb it was in a pill form as the taste is foul. When the trial ended I was unable to find a source of this herb in the high dose capsule form I was using during the trial. After being off of the herb for a few months the inflammation was back and I started Remicade.

My dermatologist regularly suggests various supplements for some of my issues since he does not want to give me certain drugs due to the Crohns. I would like to take up Yoga as I have heard that it can be very good for people with IBD.

I choose to buy only organic fruits and veggies because I believe that it is better for me the ingesting all of the pesticides. I don't eat meat but when I buy it for the rest of my household I only buy organic, antibiotic, free range products. That is a personal choice as I don't have a problem with people eating animal protein, I just think that even animals being bred expressly for the purpose of food or clothing should be treated humanely while they are alive and killed humanely when the time comes.

I think that some people on this site need to be more open minded and others need stop trying to force their agenda so strongly.
Posted 4/20/2012 2:35 PM (GMT -5)
Evening all :)

I agree that anyone should not constantly post in each and every thread although so saying there are many that equally have a signature with what drugs they are on-so really it should work both ways.
Yes alternative treatments can cost a small fortune but equally so can prescribed drugs(unless you get them on NHS or through insurance cover)
Many people also buy the best food they can afford, unfortunately most of the 'best' has been pumped full of their own types of drugs(anti-biotics etc)/fed un-naturally on other animal bi-products or grains etc that have been sprayed with numerous pesticides/insecticides. Let's face it we also eat far too much meat, far too much sugar and way too many commercially prepared foods that are pumped full of additives.

Some people do need conventional meds and IBD is not a condition to be mesed with however, equally I get fed up with people rubbishing alternatives. It is almost like a brain washing by the medical profession and drugs companies, who afterall just like alternative suppliers are out to make a profit!! Who are the losers here?? The sufferers of conditions are the guinea-pigs, in the case of drugs it either works(great) or it doesn't(not great) or it causes side affects(in some cases more serious than the condition it is supposed to be treating!) Likewise with alternatives, it may work, it may not and although it is unlikely to produce serious side affects, if it doesn't work then the sufferer could also be in a dire situation if the condition runs rampant unchecked!

I will certainly try alternatives, but like with drugs not everything works for everyone. Ds's acne cleared up on an alternative product where as the prescribed products failed, the prescribed products cost nothing(NHS) the alternative £10 per month, it wasn't about the cost it was about getting a result. Regarding his Crohn's, I must confess being a little more wary, he takes prescribed drugs and alternatives too. I know if he thinks they have had a positive impact because he tells me that they have all gone and could I please get some more!!

I am also in touch with a member of our Crohn's Association who has had colitis for many many years, he isn't on any drugs and hasn't been for a long time and he 'self healed'. Some here may think that it is a case that he didn't really have it but the IBD nurse calls him in to speak to nursing students about his condition and what he did to help himself. If his medical records were not genuine I really can't see that happening!

Petittarte-I totally agree with you. I was a dedicated meat eater but last year gave it up for good for the reasons you have given. At the start of this year I also gave up all dairy produce too(and I hate veg lol) I am now also trying to greatly reduce all things commercially produced(unless totally organic) It hasn't been particularly easy but it is getting easier.

Each and everyone has to decide for themselves what to believe and what to take/try. I totally appreciate the vulnerability of people with chronic illnesses and that they get to a stage where they will almost try anything and if conventional medicine fails what have they got to lose?

Post Edited (vixen) : 4/20/2012 1:39:00 PM (GMT-6)

Posted 4/20/2012 2:55 PM (GMT -5)

NiceCupOfTea said...
A few more things...

3)I'd rather go under the knife rather than spend a lot of time and money experimenting with diets and supplements that may or may not work - and in my case suspect wouldn't. (Besides, even if an ultra strict diet worked, would I enjoy it? No. Would I be totally miserable on it? Almost certainly.) I'm not making the decision lightly. In fact it's been torturing me for months. But ultimately, I am beyond sick of having been sick for years and I'm not prepared to spend even more years faffing around with unproven diets and treatments. That's just me; I would not expect anybody else to follow in my footsteps for a single, solitary second if they did not want to.

 

 

I tihnk the idea around those diet is for a temporary time, nobody wants to stay on them forever.  Let's pretend that you do an ultra strict diet for 1 year and all your symptoms go away. You have a colonoscopy and there is no active crohns. You can then re-introduce the food you love little by little. If you do ok and there is no problems you continue on, if you experience symptoms then, you will have a much clearer picture. You know how to cure yourself and you know your regular diet brings back the symptoms.

 

You can then make a choice; continue with the diet mod or have a surgery. And let's say the diet didn't work, and you end up having the surgery, you can then say you tried it, you gave it your best, it didn't work.

 

Posted 4/20/2012 2:58 PM (GMT -5)

NiceCupOfTea said...
A few more things...

 That idiot who was posting about clay in literally every single post has ended up influencing at least one person to buy clay. You may think that's a good thing. I would say what's the difference between that and a spammer coming onto the board and advertising a product? Money may not be being made, but such single-minded promotion of commercial products is still preying on the newbies and the desperate. In my opinion.

 

LOL, they should hire him as a spokesperson for that clay product.

Posted 4/20/2012 4:49 PM (GMT -5)
@pettitarte - I've never tried Chinese herbal medicine and wouldn't in all honesty. I'm sure thousands of years ago the Chinese knew what they were doing, but the times, they have changed.

On the other hand, I couldn't agree more about only wanting eat animals that have been reared and slaughtered humanely. I've no problems with eating meat, but I think animals deserve a natural life as possible up to the point of death. To be honest, we can't afford to eat organic meat, but we do eat organic eggs and free-range meat.

@vixen - That business about 'self-healing' sounds like pure BS to me. It incenses me when people who have extremely mild cases or are naturally in remission make out like they possess the key to a secret, eg cure of their disease. Absolute rubbish. He's lucky, that's all it is. My brother is in remission most of the time, doesn't always take his meds, and yet he wouldn't dream of taking any personal credit for it. Even I was a very mild case for a few years and that was without being on any meds for that time. God, the balderdash some people spout, honestly. I wouldn't give them 10 seconds of my time.

I don't rate alternative therapies very highly in general because I think there's a lot of hypocrisy and bad science behind them. People decry the 'bad' profit-making drug companies and then shell out hundreds of dollars on diets and supplements without blinking an eye, so it would seem. And all in the dubious name of being 'healthy', when the reality is that, despite our supposedly life-shortening lifestyles, we are living longer than we have lived for millennia. (And, no, it's not all down to modern medicine saving us from our sins.)

@somedude - I simply do not have the slightest motivation to do the SCD, or whatever. Literally none. The only thing which makes any practical difference to my symptoms is going on a liquid diet (I'm back on a mostly liquid diet now). As tedious as that may sound, I am relatively happy on it. I can still have tea with milk, real ice cream, chocolate, and so on. But best of all I can have my banana, peanut butter and chocolate smoothies. I also believe the SCD would do nothing for my gut, because I believe the SCD is far more hit-and-miss than its proponents would have you otherwise believe. Sugar is not the food of the devil: that is my belief and I'm sticking with it.
Posted 4/20/2012 6:08 PM (GMT -5)
Just wanted to chime in on those who have found remission through what they think they did (whether nothing or "natural" or "alternative treatments" or yes, perhaps even meds). The way to really know the answer to that question is to do a large controlled study. LARGE. Most researchers understand that the placebo affect alone is responsible for about 20% of a group's response, so to call something effective there has to be a difference in the two groups that exceeds 20%. There's a discussion over on the UC forum about using mesalamine enemas that reaches the conclusion that they are extremely effective. There were 127 people in this study, and it showed quite effectively that using rectal mesalamine in combination with oral mesalamine was the best route to achieve remission for UC (as compared to just oral mesalamine). That's some good science, which is almost completely absent in the case of so-called alternative therapies.

My feeling is that some of the cases of remission we hear about are spontaneous, random events that no one can ever explain. I would never base my decisions on a story like the one vixen told. Placebo affect is important, and maybe useful in treating IBD... if someone feels better when they add a supplement I am never going to tell them it's not a good thing.
Posted 4/20/2012 6:45 PM (GMT -5)
I guess you're lucky that NHS covers all your medical costs and expensive $$ drugs. In the US, we do not have socialized medicine - I certainly wish we did, we would all be better off for it.

My lousy health insurance costs me $500. per month for almost no coverage (I guess you'd call it catastrophic coverage), everything is out of pocket ( including drugs and medical tests) to the tune of $12,500. deductible per year. My darn colonoscopy was ALL out of pocket @ $5,000!

Why do I bring that up?

Cost factors vs. risk factors.

Cost of Remicade infusions in the US, I've heard ranges between $3000 (if you're lucky) to $15,000. (per infusion) depending upon location, etc... Risk factors: lymphoma, plus many many other side effects including respiratory failure, heart problems, etc.... There's no way I can afford this toxic drug, nor would I ever want to.

Cost of Canasa suppositories or 5ASA: $600. per month ... Risk factors: problems with liver and kidney functions.

Cost of slippery elm powder: $40. for for a 6 month supply....Risk factors: none.

Cost of LDN: $30 per month...Risk factors: minor sleep problems initially, initial cold or flu like symptoms

Cost of L-Glutamine powder: $35. for a 4 month supply ...  Risk factors: none.

Cost of VSL #3 DS: copay of $20-40 (depending on your insurance plan) for 3 months supply... Risk factors: none.

Cost of grass-fed animal products: about 35-50% higher than regular grain-fed products... Risk factors: none.

Cost of chia seeds: $10-15. a month... Risk factors: none

Where is the fortune being extracted through these alternative meds which work?

I can tell you that Big Pharma is extracting a small fortune for their meds - which do come with side effects, whatever you say.

As to telling me I wasn't seriously ill with UC, who are you to judge me?

I was bleeding so much every day, that my gastro finally gave me a choice of biologics or surgery - both of which I refused.

The things I outline to inform those who don't know better - who trust their doctors implicitly without questioning - or those who are looking for safe alternative methods either because they don't want the hard drugs or the hard drugs have failed them  - all these things I list have helped me into remission. Yes, I take it personally, very personally, and I do feel it is my responsibility as a human being to share what' worked for me in the hope that it might just help someone else. And I don't intend to stop either.

 

Posted 4/20/2012 7:05 PM (GMT -5)
I'm quite positive you won't stop: people on a mission and convinced of the utter rightness of their path don't stop.

The scaremongering about lymphoma is just that: scaremongering, by ideology-minded people with a vested interest in scaring people away from the drug.

Your costs are not even remotely accurate. VSL#3 was £15 for 10 sachets last time I looked (today). Recommended dosage; 1-2 sachets a day. Chia seeds. £12 for a 400g packet from Holland and Barrett. And so on, and so forth.

I don't know how ill you personally were, but I can tell you something: if I had UC, I would freaking have surgery tomorrow. To me, there's virtually no downsides. Removing the colon removes the UC; you can have an internal pouch instead of an external pouch; you are returned (by nearly all accounts) to your former state of health.

But I don't go around preaching to UC patients that they should have surgery in each and every single post of mine. I don't go around preaching in every post that you should take Remicade. Likewise, I would love it if you confined your protocol to your signature and stop spamming the board. Your behaviour is indistinguishable from somebody getting a financial kickback for advertising products.
Posted 4/20/2012 7:06 PM (GMT -5)
At the very least, go back to the UC board and stop plaguing the Crohn's board with this irritating, self-serving stuff. You have UC; not Crohn's. Two quite different illnesses.
Posted 4/20/2012 7:11 PM (GMT -5)
The scaremongering about lymphoma is just that: scaremongering, by ideology-minded people with a vested interest in scaring people away from the drug.

How is it scaremongering when my own doctor told me about the possibility of lymphoma from remicade use?

As far as costs, no, what I posted is indeed what I pay. What you pay may be entirely different.

As far as sticking only to the UC forum, No.

I was contacted by an anonymous poster requesting I post alternative approaches to Crohns as I have done on the UC forum. So, no I will not stop.

 

Posted 4/20/2012 7:14 PM (GMT -5)
Well, your own doctor is either a fool or covering his own back.

You included copay for VSL which you didn't for Remicade or Canasa. VSL#3 is hideously expensive.

Ah, it's the old "an anonymous poster approached me" approach. What utter crap. Another poster used to tell me he got messages about me in private. It's funny, in all my time on this board, I've never had a single private message from anybody, either negative or positive.
Posted 4/20/2012 7:15 PM (GMT -5)
InSoFla, please share your research showing the increase in lymphoma for Remicade users.

Thanks in advance.
Posted 4/20/2012 7:19 PM (GMT -5)
I don't have a copay for the remicade or the VSL #3 because it's all out of pocket for me.

And yes, I was contacted by an anonymous poster.

 I am not here to lie, belittle, or bully people, as some others seem to be.

 I am only here to offer help.

Posted 4/20/2012 7:37 PM (GMT -5)
Okay everyone - ENOUGH!

I am locking this thread. People are getting upset by the tone of these posts.

Ides
Posted 4/21/2012 8:34 PM (GMT -5)
InSoFla,
Please refrain from pushing your agenda on other people's threads. This is obviously irritating to members. I'm not saying anything for or against the treatments you recommend, but hijacking threads is not acceptable. If you persist, I will have to ban your account.

Peter
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