Re: Question for the pros...and what did Elaine say?...

[Guest guest]

I never understood this reasoning as many still flare while they are

on meds, including myself.

For years, I was told by my doctor that " Jodi, Crohn's patients need

to be responsible and take their meds every day for the rest of their

lives "

The Specific Carbohydrate Diet helps us heal.

I think many of us have to take care of ourselves and be super careful

with lifestyle choices but I think this diet keep many flares at bay

and if we need meds on an SOS/ER basis we can take them. This idea of

inevitability and landing in the hospital- this *can* happens on meds

anyway.

I just don't see the reasoning living on meds in fear that it will

prevent a flare. In my case, it never really worked that way.

There are so many things one can use with diet to attain a healthier

lifestyle...

Jodi

[Guest guest]

I've been on Predinsone and Asacol for about 12 years. I only used them 2 to 3 times a year when I had a flare and usually only for a month or so. I tried SCD because the flare were lasting longer and becoming more frequent and the Prednisone side effects were getting worse. I started SCD between flares when I was already 'temporarily" off the meds - I never went back. I've been off the meds for around 11 months now. I still have flares but only when I eat something I'm not supposed to, and they go away pretty quickly as long as I don't make any more mistakes. I have more flares than I would like because I'm still making mistakes (always at restaurants, meetings, and friends houses). The flares are frustrating but, at the same time, empowering because they reinforce that the diet actually works based on what I eat.I'm extremely strict SCD at my house but still make too many mistakes in the dangerous world outside my house. I'm getting smarter and smarter about it though and I'm healing faster and faster despite my repeated screw ups. I'm at a point where I really feel that I'll be able to control this 100% through SCD and never have to go back to the meds. I certainly hope that's the case.HarveyCrohns 13 yearsSCD 10 monthsMed Free 11 months, feeling good, gaining weight, and marveling at this diet.  I've visited another forum where the question of maintenance meds vs diet came up; whether one can or should control Crohn's by diet alone.  The point always made there is that the disease can and willprogress while you are in remission, inevitably landing you in the hospital.  They say never go it alone without maintenance meds... I'm wondering what you all think about this?  My son has been "in remission" for a year and a half now.  All blood markers are normal and he has no symptoms.  He follows the SCD and has no problem doing so (actually, the whole family follows it).  His GI told him 9 months ago that he could  discontinue his only medication--Asacol, so he did.    I know many of you are off all meds and I'm inspired by that!!!  Did Elaine have any opinions on this?  I've searched and can't really find anything.  Just curious what you all think!  Thank you!  

[Guest guest]

One thing I've found over the past few years is that most people are

afraid to go against the prescribed thoughts and recommendations of

doctors. It's almost heretical to think that maybe drugs are not the

answer, or at least part of the answer. It could be cultural too. I

felt like a rebel turning my back against using drugs for my son, but I

knew, as Jody says, that he was no better with drugs, and potentially

worse. Can you believe how drugs are marketed to us in the media these

days? I can't believe how many Viagra commercials I see a day, not to

mention Lipotour (sp?).

A good friend, who is also a gastroenterologist, said to me at one

point in my research, " every drug has some level of toxicity, so it's a

matter of tradeoffs " . With SCD, I don't think you have to trade

anything - that's the beauty of it - it's all about food, the fuel of

life. The only thing I would add is that some folks do need drugs at

some critical points. But not as maintenance - for us anyway.

a

comfybelly.com

[Guest guest]

I've had periods when my gastro said I was in remission on the basis of the results of a colonoscopy, but always during that time I was very anemic, had severe D, and low grade fever and heavy fatigue. My bloodwork always showed elevated CRP and white blood cells and low blood volume. I took my Asacol faithfully with no change in anything. I took antiobiotics for flare-ups and prednisone for really bad flare-ups so I don't know what the Asacol was suppose to be doing. I got major flare-ups about 3 times a year.

After 4 days on SCD the D went away and after a month the anemia and inflammation went away. I've been great for 6 months and I take no meds at all. For the first few months I was on prednisone so I wasn't positive my results were from SCD, though I highly suspected it because prednisone never stopped the D or anemia.

Based on what Drs see, they are probably right, the disease will continue during a remission BUT they are not familiar with SCD and haven't seen the results that can be obtained with it. I'm fully believing that as long as I follow the diet I will not need drugs. I've never been this well on any medication. This is the first time I can ever remember being fever free for so long.

Ann,

Living in Italy

Undiagnosed Crohn's since 1977 Diagnosed 15 years

Sacroiliitis 25 years

Rheumatoid arthritis 25 years

Pyoderma Gangronosum 2 years

SCD since July, 2008

Meds: None

To: BTVC-SCD Sent: Friday, January 30, 2009 2:51:55 PMSubject: Question for the pros...and what did Elaine say?...

I've visited another forum where the question of maintenance meds vs diet came up; whether one can or should control Crohn's by diet alone. The point always made there is that the disease can and will progress while you are in remission, inevitably landing you in the hospital. They say never go it alone without maintenance meds... I'm wondering what you all think about this? My son has been "in remission" for a year and a half now. All blood markers are normal and he has no symptoms. He follows the SCD and has no problem doing so (actually, the whole family follows it). His GI told him 9 months ago that he could discontinue his only medication-- Asacol, so he did. I know many of you are off all meds and I'm inspired by that!!! Did Elaine have any opinions on this? I've searched and can't really find anything. Just curious what you

all think! Thank you!

[Guest guest]

>

> I've had periods when my gastro said I was in remission on the

basis of the results of a colonoscopy

> Ann,

> Living in Italy

> Undiagnosed Crohn's since 1977   Diagnosed 15 years

> Sacroiliitis 25 years

> Rheumatoid arthritis 25 years

> Pyoderma Gangronosum 2 years

> SCD since July, 2008

> Meds: None

>

> Ann,

I am curious, did you see an improvement in your Sacroiliacs when

you started SCD? For me the Arthritis symptoms (mostly in and near my

sacroiliac area, legs and feet)were the first to subside. I probably

have Crohn's secondary to Reactive Arthritis, and AS , or I was

brought from a near lifelong remission (only two flares prior to

being diagnosed) by taking NSAID's for the pain. My only arthritis

diagnosis is Crohn's arthritis, but a large majority of my Father's

family carry the genetic predisposition for both ReA and AS. All of

them who have been tested and have an extra vertebrae at the base of

our spines, have tested HLA-b27 positive. I have the extra vertebrae

trait, but have not been tested for the HLA-b27 gene varient.

________________________________

[Guest guest]

I completely understand your concern about your son and meds.

My 8 yr old dd was so ill with every Crohn's symptom last spring, she missed 6 weeks of school. The big shot GI specialist in Chicago said flat out, "Diet has nothing to do with it."

He told me to feed her any soft foods she likes. I listened to the 'expert' and she continued to deteriorate. Luckily before she was put on any meds. we found the SCD and she began healing immediately.

I read a statement from another doctor who claimed he had never "seen a fistula heal with out surgery in his 20 years." My daughter's fistula also healed in 2 months on the diet....no surgery.

I've called doctor after doctor trying to find one that understands the way this diet works. I have found none! Most have never even heard of it.

How can I trust what the "experts" say when they aren't even aware of this amazing diet?

My daughter is doing better and better. She has almost NO symptoms after 8 months of following first the intro, and then the diet "fanatically." She never cheats!

The other 5 in our family have seen dramatic health improvements also.

I avoid ALL medication for our family now when possible. We use mostly ginger tea for minor ailments.

I believe that my daughter's milk intolerance caused the many infections she had as a baby and young child. The years of antibiotics, I believe, are part of what made her so sick. I can't even find a doctor who agrees with me on that fact that milk could have been part of her problems (even though her chronic constipation and asthma suddenly disappeared).

I realize I might be taking a gamble with my daughter here but it feels like a much stronger gamble to put more medication in her body she continues to improve on simply healthy foods.

Good luck!

Donna

Subject: Question for the pros...and what did Elaine say?...To: BTVC-SCD Date: Friday, January 30, 2009, 7:51 AM

I've visited another forum where the question of maintenance meds vs diet came up; whether one can or should control Crohn's by diet alone. The point always made there is that the disease can and will progress while you are in remission, inevitably landing you in the hospital. They say never go it alone without maintenance meds... I'm wondering what you all think about this? My son has been "in remission" for a year and a half now. All blood markers are normal and he has no symptoms. He follows the SCD and has no problem doing so (actually, the whole family follows it). His GI told him 9 months ago that he could discontinue his only medication-- Asacol, so he did. I know many of you are off all meds and I'm inspired by that!!! Did Elaine have any opinions on this? I've searched and can't really find anything. Just curious what

you all think! Thank you!