Asymptomatic vs. no signs of disease

[Guest guest]

At 11:22 PM 12/15/2009, you wrote:

I guess I know what you mean and

am not a depressed person in general although this " diagnosis "

has defnitely done a number on me!!! I'm trying to stay strong, the

social stuff sucks on this diet especially while everyone stuffs their

mouths with everything and seems perfectly fine...so not fair but I know

lifes not supposed to be fair.

Actually, my social life is BETTER than it was before SCD. Sure, I have

to carry a food bag with me (and I have even carried my own food to two

wedding receptions!).

But what the heck? I don't spend the entire event wondering when, not if,

I'll have to bolt for the bathroom. And if, when I do bolt, I'll be able

to make it. Or if I'll be able to clean up adequately. (I no longer have

to carry clean underwear and wet wipes with me -- I'd rather take a food

bag, any day!)

I can't change the hand heredity and environment have dealt me. What I

can change is my attitude towards it, and how I take control of my own

health situation.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

I have to agree.

My whole life has changed as well and all it entails is taking my own food with

me and now I can even eat out.. So what! that I am the gal that gets Steak with

veggies. Everyone loves seeing me feel better and we enjoy each others company!

That is what it is about anyway.

There is so much light at the end of the tunnel due to this SCD. I also

consider the mind/body work that I do crucial as well! I consider it nothing

short of a miracle for me!!

Jodi

> >I guess I know what you mean and am not a

> >depressed person in general although this

> > " diagnosis " has defnitely done a number on me!!!

> >I'm trying to stay strong, the social stuff

> >sucks on this diet especially while everyone

> >stuffs their mouths with everything and seems

> >perfectly fine...so not fair but I know lifes not supposed to be fair.

>

> Actually, my social life is BETTER than it was

> before SCD. Sure, I have to carry a food bag with

> me (and I have even carried my own food to two wedding receptions!).

>

> But what the heck? I don't spend the entire event

> wondering when, not if, I'll have to bolt for the

> bathroom. And if, when I do bolt, I'll be able to

> make it. Or if I'll be able to clean up

> adequately. (I no longer have to carry clean

> underwear and wet wipes with me -- I'd rather take a food bag, any day!)

>

> I can't change the hand heredity and environment

> have dealt me. What I can change is my attitude

> towards it, and how I take control of my own health situation.

>

>

> — Marilyn

> New Orleans, Louisiana, USA

> Undiagnosed IBS since 1976, SCD since 2001

> Darn Good SCD Cook

> No Human Children

> Shadow & Sunny Longhair Dachshund

>

[Guest guest]

It does take a little time at first to get used to having a different

diet and being totally responsible for sticking to it even unto carrying

food wherever we go. But as Marilyn says, the rewards are great in

improved gut pain and bathroom disasters. As to thinking everyone

else eats what they want and are fine, maybe so, maybe not. Even if

they can now, poor diet may get them later or they may have other and

even worse problems to deal with. I find that most people hardly

even notice I'm eating differently or pulling stuff out of my purse at a

restaurant even. A few ask and it's very rare that anyone is

hostile. If a friend asks I will tell them as much as they want to know;

if a stranger asks I will usually say I have " severe

allergies " . Everyone understands about allergies. I think you

will find with a little practice this will come easier. In the meantime

try to focus on the positive if you can.

I'm trying to stay strong, the social stuff sucks on this diet

especially while everyone stuffs their mouths with everything and seems

perfectly fine...so not fair but I know lifes not supposed to be fair.

[Guest guest]

> I'm trying to stay strong, the social stuff sucks on this diet especially

while everyone stuffs their mouths with everything and seems perfectly fine...so

not fair but I know lifes not supposed to be fair.

Some practical advice. If there is nothing you can eat at

a certain bar or friend's house or hang out joint, and you don't

feel comfortable bringing food with you yet,

eat before you go out - that way, you won't be hungry and

have cravings.

Secondly, eventually you'll care a great deal less about the

food you can no longer eat. I still think about pizza occasionally,

but overall, mostly when I'm walking by a pizza place and it smells

good, and once your taste buds adjust - and if you take time to care

for yourself by cooking yourself delicious food, you won't miss

the other stuff.

I know this can be an emotional issue for some - but it definitely

becomes less acute over time.

Mara

[Guest guest]

Hey Amber,

I certainly don't mind you posting about my blog. I'm glad you did as you've

started an interesting conversation that a lot of people have a definite opinion

about.

Like you've said, we're just trying to make the decisions that are best for us.

When I was getting ready for the follow up appointment with my GI after the

colonoscopy, I figured he would again recommend that I take Imuran. I wasn't

going to do that, but it led me to re-research the available treatments for

Crohn's. What came out of that exercise was a simple tool that buttressed my " no

drugs " position.

I've posted it on my blog.

Cheers,

Stocker

http://eatingSCD.com

>

> Hi ,

>

> I hope you don't mind my posting about your blog. It was just something that

really got me thinking about the possibility for me getting off my medications.

>

> I really appreciate your honesty, and I know that you didn't have a scope

pre-SCD to compare it to, so there is that to take into consideration.

Definitely having no symptoms is better than being symptomatic, and the blood

work results are great too.

>

> I'm not trying to be a downer or doubter, I just have concerns about my own

personal decisions about medication. I also worry, because I've read that it's

chronic inflammation that causes caner. However, I'm on Remicade and

Methotrexate- and those can cause cancer too. I know nothing is a guarantee. I

can be on meds and still have chronic inflammation and get sick. I've never been

a fan of meds, and if I can heal myself through diet, I'm all for it.

>

> I admire your drive to stick with the SCD, and I hope that one day if you ever

have to get scoped again, that your test comes back clean and disease free. I'm

hoping that for me too!

>

> Thanks,

>

> Amber

>

[Guest guest]

Thanks PJ.

Here's what my Dr. said about my colonscopy: " superficial ulceration " at ileum

and a narrowing at the ileum. The narrowing was not a surprise as I hadn't done

any kind of treatment for about 17 years before the SCD. Qualitatively, from

what he could see, he considered my disease to be mild. Quantitatively, when he

learned that 10cm of my bowl was involved he re-characterized my disease as

moderate.

I some ways I regret getting the scope. It caused me a great deal of unnecessary

stress which had their own physical ramifications. On the other hand, it has

generated some good conversations...

Cheers,

eatingSCD.com

>

> Hi ,

> I'm a fan of your blog. What puzzles me is how bad could the scope results

have been without symptoms and a sed rate of 2? The only thing I can come up

with is, yes there was some evidence of Chrons, but what would the results have

been without SCD? - and one will never know because we can't test " you " as a

control as well. I do wonder if this scope was a step in the right direction...

that the next one (hopefully a long way off) will be better. I certainly hope so

for everyone on this board.

>

> PJ

>

[Guest guest]

,

Since you had no treatment for years, and all he saw was superficial ulceration,

that sounds like probable improvement after 2 years on SCD compared to 17 years

off it.

I don't blame you for not wanting another colonoscopy for a long time. They're

wretched.

PJ

> >

> > Hi ,

> > I'm a fan of your blog. What puzzles me is how bad could the scope results

have been without symptoms and a sed rate of 2? The only thing I can come up

with is, yes there was some evidence of Chrons, but what would the results have

been without SCD? - and one will never know because we can't test " you " as a

control as well. I do wonder if this scope was a step in the right direction...

that the next one (hopefully a long way off) will be better. I certainly hope so

for everyone on this board.

> >

> > PJ

> >

>

[Guest guest]

Secondly, eventually you'll care a great deal less about the

food you can no longer eat

This is entirely true. My DH has a stainless steel gut, I am

convinced. He eats (but very moderately) of whatever he wishes. It's

been 27 years since my gut went nuts, and it's been a long time since

anything he eats bothered me. It might as well be dog food. The most

that happens is once in awhile I will think something of his smells

good or something but I'm not at all tempted to eat it. I even bake

for him and never nibble, not any more.

[Guest guest]

The one good thing I can say about the crohn's board I go to is that I did learn

about SCD there (from a few rogues who promote diet over meds ;-)). The main

reason I stay there is to provide resources when a new person asks about SCD.

Here's a recent post about what foods are good for a bad gut:

http://www.healingwell.com/community/default.aspx?f=17&m=1669119 . Can you guess

which poster I am (hint: I'm about the only one who doesn't mention mashed

potatoes and white toast).

Holly

Crohn's

SCD 12/01/08

>

>

> After traveling the country and meeting many people (in person) who have been

on the SCD for years and also looking at my own experience (3 years med free

with no signs of Crohns via CT scan or scope) it is clear to me that the SCD

prevents (at least in some people) progression of the disease and even kicks it

back into its most benign state.

> Without SCD we would have fistulas, abscesses, resections, pain, and all other

ways that the disease manifests itself. On the diet we are not only

asymptomatic but also do not have to deal with major Crohn's related issues.

> It really is a shame that Crohn's sites dismiss the SCD. I actually stopped

visiting them because I saw how easily the SCD was dismissed and that lead me to

doubt the value of their other advice. I really do not understand why some

people in the medical and Crohn's community appear so closed minded to the SCD

but I am hoping science will prove them wrong one day so that others can benefit

from this most healthy solution.

> Three years ago when I first started with my GI she was " ho hum " about the SCD

and now she is the biggest advocate always encouraging me to stay on the diet

and introducing me to her residents as " her poster child for alternative

medicine. "

> Jill

>

>

>

> > I go to a crohn's forum (HealingWell.com), and whenever someone brings

> > up SCD, the moderators pipe in that it only helps your symptoms, and

> > that the disease continues to do microscopic damage. I would love to

> > refute them on this!

> >

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>

[Guest guest]

Hi, Holly,Sounds like you are providing a real service, going on that site and letting folks know about scd.Without you, they might not learn about it, or it could be years before they do.What a generous thing to do.RuthRe: Asymptomatic vs. no signs of diseasePosted by: "spookyhurst" spookyhurst@... spookyhurstWed Dec 16, 2009 10:51 pm (PST)The one good thing I can say about the crohn's board I go to is that I did learn about SCD there (from a few rogues who promote diet over meds ;-)). The main reason I stay there is to provide resources when a new person asks about SCD.Here's a recent post about what foods are good for a bad gut:http://www.healingwell.com/community/default.aspx?f=17 & m=1669119 . Can you guess which poster I am (hint: I'm about the only one who doesn't mention mashed potatoes and white toast).HollyCrohn'sSCD 12/01/08