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How I healed from Crohn's Disease

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Crohn's Disease
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Posted 12/20/2012 8:48 PM (GMT 0)
Yes, believe what you want. The giant mountain of scientific evidence on one side, and some blog posts on the other side. It's a toss up.
Posted 12/20/2012 9:39 PM (GMT 0)

beave said...
Yes, believe what you want. The giant mountain of scientific evidence on one side, and some blog posts on the other side. It's a toss up.

mountain of what??? All of evidence of a disease that is classified as "unknown cause" by the so called experts? Are you for real?? The same experts that tell you that what you eat has no effect on a digestive disease??

I'll put my money on what worked for me and countless others who were willing to be open minded and not led around like sheep.

talk about laughable.
Posted 12/20/2012 9:43 PM (GMT 0)
Right, so you know what "causes" Crohn's, but Crohn's researchers don't?
Posted 12/20/2012 9:45 PM (GMT 0)
I've had Crohn's for 25 years now.
No meds.
No surgeries.

Who's laughing now?

Not what you expected, huh?
Posted 12/20/2012 9:45 PM (GMT 0)

joefigliano said...
Once it was confirmed that my inflammation had gone I started weaning off all my prescribed medication one at a time. Then I weaned off all the natural medicine until there was absolutely nothing that I was taking for my illness. From that point I slowly reintroduced all my old foods completely including all the not-so-healthy foods I used to love. In Autumn 2008 I was completely symptom free for at least two months – so I even reintroduced my smoking and occasional drinking.

I had reintroduced everything into my life that I had taken away in order to heal. I even stopped exercising and yoga. The only thing that remained that I had used to help me heal was my mindset and perception change. .................................................

It has now been over 4-1/2 years and during that time I have not had any flare-ups or any symptoms whatsoever related to Crohn’s disease. I have no special diet or exercise schedule. I am not on any type of medication including natural remedies. What I am doing now is not leaving anything to chance. I have decided to live a healthy lifestyle by choice and have given up most unhealthy habits.

I'm still struggling to understand the original post. If you don't exercise, smoke, and eat whatever you want, how is that "not leaving anything to chance"? The argument in the original post isn't to follow a healthy diet. It is that mind over matter can defeat this disease and keep it at bay.

Posted 12/20/2012 9:52 PM (GMT 0)

NiceCupOfTea said...
Right, so you know what "causes" Crohn's, but Crohn's researchers don't?

Who are these Crohns researchers you speak of? No such thing. maybe you are referring to drug companies. The way drug companies work is they find certain chemicals that have certain effects on the body. When they find out that a certain compound has a certain effect on something they then test it and then market it to the diseases they claim it can help.

Thats why humira is marketed to several diseases. it supresses your immune system so hey let's sell it to disease A B and C because the immune system is active in these diseases. No thought or care about why your immune system is active.

There is no such thing as researchers that try to find a cause and cure for crohns. Its against all business practices to cure there customers. it's like asking gas companies to invent a car that runs on water.

Its sad but true.
Posted 12/20/2012 9:54 PM (GMT 0)

beave said...
I've had Crohn's for 25 years now.
No meds.
No surgeries.

Who's laughing now?

Not what you expected, huh?

Wait, no meds ever? Or just no meds now?

I've got a brother with Crohn's who's had it for about, I dunno, 14 or 15 years. (Longer than me, but not much longer.) No surgeries in his case. No biologics either, although he does stay on maintenance meds and has taken Pred a few times for flare ups.

I guess my brother must be doing something massively wrong with his disease, too.
Posted 12/20/2012 9:56 PM (GMT 0)

beave said...
I've had Crohn's for 25 years now.
No meds.
No surgeries.

Who's laughing now?

Not what you expected, huh?

I was never laughing. You were the one that laughed at me.
What do you attribute your success to?
Posted 12/20/2012 9:57 PM (GMT 0)

livingwell249 said...

NiceCupOfTea said...
Right, so you know what "causes" Crohn's, but Crohn's researchers don't?

Who are these Crohns researchers you speak of? No such thing. maybe you are referring to drug companies. The way drug companies work is they find certain chemicals that have certain effects on the body. When they find out that a certain compound has a certain effect on something they then test it and then market it to the diseases they claim it can help.

Thats why humira is marketed to several diseases. it supresses your immune system so hey let's sell it to disease A B and C because the immune system is active in these diseases. No thought or care about why your immune system is active.

There is no such thing as researchers that try to find a cause and cure for crohns. Its against all business practices to cure there customers. it's like asking gas companies to invent a car that runs on water.

Its sad but true.

Please stop embarrassing yourself. Seriously.
Posted 12/20/2012 10:01 PM (GMT 0)

beave said...

livingwell249 said...

NiceCupOfTea said...
Right, so you know what "causes" Crohn's, but Crohn's researchers don't?

Who are these Crohns researchers you speak of? No such thing. maybe you are referring to drug companies. The way drug companies work is they find certain chemicals that have certain effects on the body. When they find out that a certain compound has a certain effect on something they then test it and then market it to the diseases they claim it can help.

Thats why humira is marketed to several diseases. it supresses your immune system so hey let's sell it to disease A B and C because the immune system is active in these diseases. No thought or care about why your immune system is active.

There is no such thing as researchers that try to find a cause and cure for crohns. Its against all business practices to cure there customers. it's like asking gas companies to invent a car that runs on water.

Its sad but true.

Please stop embarrassing yourself. Seriously.

Nice general statement. With no evidence to refute anything Ive said. You are close minded and outright dangerous to people on this forum. Maybe you have your own agenda?
You should be banned from this site.
Posted 12/20/2012 10:03 PM (GMT 0)

NiceCupOfTea said...

beave said...
I've had Crohn's for 25 years now.
No meds.
No surgeries.

Who's laughing now?

Not what you expected, huh?

Wait, no meds ever? Or just no meds now?

I've got a brother with Crohn's who's had it for about, I dunno, 14 or 15 years. (Longer than me, but not much longer.) No surgeries in his case. No biologics either, although he does stay on maintenance meds and has taken Pred a few times for flare ups.

I guess my brother must be doing something massively wrong with his disease, too.

NCOT, several years back I was thinking I should be on a "maintenance" med, so I tried Pentasa for a while, felt like it didn't do anything, and stopped (with the blessing of my GI).

I then tried imuran and 6mp and couldn't tolerate either one.

With one bad flair in 2006, my GI gave my flagyl. Big mistake. Highly allergic, almost killed me. Needed a couple months of pred for the allergic reaction, which also knocked out the Crohn's flare.

That's the only time I've really taken anything for a flare. I've had a couple other flares that made me fairly sick for a couple months, but it went away on its own those times.
Posted 12/20/2012 10:03 PM (GMT 0)

livingwell249 said...

NiceCupOfTea said...
Right, so you know what "causes" Crohn's, but Crohn's researchers don't?

Who are these Crohns researchers you speak of? No such thing. maybe you are referring to drug companies. The way drug companies work is they find certain chemicals that have certain effects on the body. When they find out that a certain compound has a certain effect on something they then test it and then market it to the diseases they claim it can help.

Thats why humira is marketed to several diseases. it supresses your immune system so hey let's sell it to disease A B and C because the immune system is active in these diseases. No thought or care about why your immune system is active.

There is no such thing as researchers that try to find a cause and cure for crohns. Its against all business practices to cure there customers. it's like asking gas companies to invent a car that runs on water.

Its sad but true.

No researchers for Crohn's, eh?

www.endoscopylondon.co.uk/dr-james-lindsay.php
www.londonbridgehospital.com/LBH/consultant-det/dr-jeremy-sanderson/
www.ucl.ac.uk/ucl-iris-project/iris/staffprofile.php?ref=AFORB17
www.fatigueinibd.co.uk/research/

But, you know, even if you were right, are you honestly saying you know more about Crohn's and its causes than any of those people?
Posted 12/20/2012 10:08 PM (GMT 0)

livingwell249 said...

beave said...
I've had Crohn's for 25 years now.
No meds.
No surgeries.

Who's laughing now?

Not what you expected, huh?

I was never laughing. You were the one that laughed at me.
What do you attribute your success to?

I don't attribute it to anything, because doing so would only be a guess. Maybe it's my diet, maybe it's dumb luck, maybe it's because I listen to cool music on a good stereo. Or because I cut my own hair. I simply have no idea.

And that's the difference between me and those who peddle un-tested "cures" or "treatments." They don't know either. They're basing their claims on untested hypotheses.
Posted 12/20/2012 10:10 PM (GMT 0)
beave - cheers for that. It sounds like you are "lucky" (although I dislike saying that) in having Crohn's that sounds like it's in remission most of the time. Even so, you are an interesting example of somebody who hasn't taken meds or gone on a super-duper strict diet to control their disease: I do very much suspect that there is a randomness, or spontaneity, to Crohn's disease which few people will allow for.
Posted 12/20/2012 10:11 PM (GMT 0)

NiceCupOfTea said...

livingwell249 said...

NiceCupOfTea said...
Right, so you know what "causes" Crohn's, but Crohn's researchers don't?

Who are these Crohns researchers you speak of? No such thing. maybe you are referring to drug companies. The way drug companies work is they find certain chemicals that have certain effects on the body. When they find out that a certain compound has a certain effect on something they then test it and then market it to the diseases they claim it can help.

Thats why humira is marketed to several diseases. it supresses your immune system so hey let's sell it to disease A B and C because the immune system is active in these diseases. No thought or care about why your immune system is active.

There is no such thing as researchers that try to find a cause and cure for crohns. Its against all business practices to cure there customers. it's like asking gas companies to invent a car that runs on water.

Its sad but true.

No researchers for Crohn's, eh?

www.endoscopylondon.co.uk/dr-james-lindsay.php
www.londonbridgehospital.com/LBH/consultant-det/dr-jeremy-sanderson/
www.ucl.ac.uk/ucl-iris-project/iris/staffprofile.php?ref=AFORB17
www.fatigueinibd.co.uk/research/

But, you know, even if you were right, are you honestly saying you know more about Crohn's and its causes than any of those people?

What is that?? A list of GIs that were tought in standard medical school? NCOT you can do better than that..It's funny how the only one that has 'research" also has a nutritionist in the group.

I can't look up the links but what about the University that just had 100% success with people by treating them with diet alone of the group that is mapping bacterial DNA in people with IBS and comparing them with healthy people? If you like google can help you.
Posted 12/20/2012 10:14 PM (GMT 0)
By the way..I'm not exactly so strict with my diet also. But I never had bad symptoms and when I feel the slightest bit of anything I eat well for a few days and I take anti-fungals.
Posted 12/20/2012 10:22 PM (GMT 0)
Uh, no: they're all engaged in Crohn's research of one kind or another: for Prof Alastair Forbes try clicking that handy "research" tab, for example. Or the "publications" tab, where you'll see, among many other things, stuff like this:

Ng SC,Koutsoumpas A,Hedin CR,McCarthy NE,Plamondon S,Kamm MA,Knight SC,Forbes A,Lindsay JO,Whelan K,Stagg AJ (2008) Production of il-10 by colonic dendritic cells is associated with higher concentrations of faecal microbiota in patients with active crohn's disease GUT, 57, A144 - A144.

And Dr James Lindsay made his PhD in novel Crohn's therapies.

But you still know more than these guys about what causes Crohn's? Uh-huh.
Posted 12/20/2012 10:25 PM (GMT 0)
Thanks NCOT.

Livingwell, I attend an annual IBD conference with several speakers who are PhD geneticists and PhD immunologists who are studying the causes of IBD. I think they'd be a littlle insulted at your claim that nobody is doing so. I also have 4 friends of friends who are PhD microbiologists who spent the early part of the 2000s studying the causes of IBD, RA, etc.

At those conferences it has been discussed many times that roughly 1/3 or 1/4 people with Crohn's tend to have a fairly mild course, going years between flares and never needing surgery.

The way I see it, some of these "lucky" ones think their mild course is something they have done for themselves with diet or lifestyle changes, and then they try to convince others that they must do it the same way. The truth is that those people were likely destined to have a mild course no matter what, so they're attributing it to something that *seems* like it makes sense (diet), but it isn't necessarily so.

Livingwell, diet is also being studied. It very well may turn out that diet does impact IBD in some ways, but that is simply a hypothesis right now. It seems logical, but medicine over the years has had many hyphotheses that seem to make sense, only to have them turn out untrue when really tested.

So docs shouldn't really say diet makes no difference. They should say 'we don't know whether it does, or whether it does for some but not others...'

I have no problem with people trying diets and seeing if they can find something that works for them that way.

I do have a problem with claims about diets, claims that simply have not been verified by scientific studies. And testimonials, no matter how persuasive they may seem, are not evidence.
Posted 12/20/2012 10:43 PM (GMT 0)
Well I haven't posted here for long time, haven't Evan peeked until today, bored, off work. I've had cd for 42 yr's. I have been in remission many times. I'm in remission right now, with no gi, gave up on them. Treat myself. 5mg of pred and I do need norco's because of 9ft of small bowel removd, so norco's slow things down. I would go to br 4-6 times in the morning, to many times, for me any way. I do take a tincture that I make(not legal) to talk about on hw, but it works for me, I eat absolutely anything, no restriction at all. But I'm on Ssdi because of all the post op issues. From 42 yr's ago. My point is whatever gets you to remission, does not matter how you got there, I do try to eat 80 percent plant based diet, just because it is a healthy way to eat, when I was in rough shape I couldn't eat what I do now. I have tried biologics, and my body rejected them.
AG
Posted 12/21/2012 1:58 AM (GMT 0)
Guys, I know this is so touchy for everyone because we have different opinions and different things that work for us. I think it's important that we support each other and help others here. It's good to share our opinions and experiences with others. But please remember that what works for someone doesn't work for everyone. lol, it's like raising children - everyone has their opinions on what worked for their kid so it must work for every kid, when that's not true at all! :)

I have a lot of respect for both sides. I personally don't think it's all through meds or all through diet, at least for me it's not. I have to do both in order to be in remission. I've had zero success with doing all one or all the other. Everyone's bodies are different and react differently to medications, treatments, etc. We all have the same disease, but it treats us differently and can have different triggers and problems. Let's keep sharing what works for us, and not accuse each other or put down others' ideas. Both sides are important. As we talk about newbies to the site, I think it's important to remember that we need both sides on this site. So can we get along? Please?
Posted 12/21/2012 1:58 AM (GMT 0)
And I know I haven't been perfect at what I've just told everyone else to do, lol. :)
Posted 12/21/2012 6:46 AM (GMT 0)
Some IBDers are milder cases than others and don't require maintenance meds and only have to go on meds occasionally when they do flare....it's individual for each...some can control their milder disease with diet, supplements, exercise (all or some of those options) so why argue.
Posted 12/21/2012 7:47 AM (GMT 0)
@livingwell249

How can you try and make derrogatory statements about a Physician (Medical Doctor) who went to a "standard medical school"? Are you serious?

What kind of medical school do you think a doctor should go to? One that uses Pixi Dust and Eye of Newt in their treatments?

Your rationale for your suggested treatments is the reason that the LAW requires Phsyicians to have specific educational backgrounds. It is simply very dangerous and misguided for a person lacking a proper medical degree to make treatment reccomendations or decisions when they do not understand ANYTHING about how the human body works in reality.
Posted 12/21/2012 1:45 PM (GMT 0)
Please be civil, everyone. Just because we disagree on treatment options doesn't mean we can't treat each other with respect.
Posted 12/21/2012 9:04 PM (GMT 0)
Everyone can list doctors with every credential and until someone can show me just 1 that can positively tell me the root cause of IBDs I will continue to do what I know works.

I eat like crap. I feel like crap. I eat well. I feel better. Do I know better than doctors with my own body? Absolutely.


Everyone holds doctors up to these God -like statuses. Don't be so naive. They go to schools that teach them Drug A treats Disease C. Have an honest discussion with any MD and they will have to admit it. Ask your doctor how much did medical school teach them about nutrition. I guess food has nothing to do with any diseases but prescribing synthetic drugs for bodies that have evolved over 250,000 years. Yeah that makes sense.


Be your own doctor.
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