Re: Surgery referral

[Guest guest]

I would definately find another GI for another opinion and then maybe a third. Has she been strict scd for 7.5 years and now this problem? Katy

____________________________________________________________SHOCKING: 13" Macbook Pro for $91.72!SPECIAL REPORT: Macbooks are being auctioned for an incredible 85% off!ctips.net

[Guest guest]

> I would definately find another GI for another opinion and then maybe a third.

Has she been strict scd for 7.5 years and now this problem? Katy

She has been very strict and eats only basic foods when she has a problem. Last

year, following c.diff infection, went up and down on the pred. and started

Humira.

[Guest guest]

I am so sorry for your daughter!

To the rest of the group, this scares the crap out of me! 7.5 YEARS on SCD and

now this? How sad that her diet has been restricted for so long and she still

has to have her colon removed? I am freaking out! Are there more people like

this and are those who feel better, are they really healed or is it a placebo

effect? I'm sorry all, I am just having a hard time with this message!

>

> Hello, my 15 yo daughter with UC has been referred to surgery for colon

removal. Not happy at all! Scope last Thurs. showed totally inflamed colon. She

had gone into a flare 1 mo. prior. Dr. put her back on 60 mg prednisone. I

tried to get him to try LDN but he won't because he says there are no case

studies for UC. I have complete faith in the diet, she's been on 7.5 years,

with 4 fantastic years of good health. We're down to surgery because she's been

thru every med there is (Humira most recently). I am in process of trying to

find a GI to give 2nd opinion and be willing to try LDN. Any thoughts are

welcomed.

>

> Thanks, in IN

> 15 yo daughter UC 9 yrs, SCD 7.5 yrs, 60 mg pred(1 wk), Pentasa, lyosan

acidophilus, SCD multi, SCD B complex, folic acid, SCD calcium, vit.D

>

[Guest guest]

To the rest of the group, this scares the crap out of me! 7.5 YEARS on SCD and now this? How sad that her diet has been restricted for so long and she still has to have her colon removed? I am freaking out! Are there more people like this and are those who feel better, are they really healed or is it a placebo effect? I'm sorry all, I am just having a hard time with this message!Um, yeah, you aren't the only one!! That scared the crap outta me reading that!!! Not really sure what to make of it... Cheers!Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 75 mg 1x per dayPrednisone 20 mg 1x per day

[Guest guest]

> To the rest of the group, this scares the crap out of me! 7.5 YEARS on SCD

and now this? How sad that her diet has been restricted for so long and she

still has to have her colon removed? I am freaking out! Are there more people

like this and are those who feel better, are they really healed or is it a

placebo effect? I'm sorry all, I am just having a hard time with this message!

>

Please don't freak out. The reason she still has her colon is the diet! She

was on the verge of surgery before. She started Remicade at that time. It truly

is a healing diet. I think having had c.diff. plus all the hormonal changes at

her age has had an effect.

[Guest guest]

thank you for explaining!! I was on my way to the icecream stand!!! LOL

eileen

2 years 5 months scd

>

>

> > To the rest of the group, this scares the crap out of me! 7.5 YEARS on SCD

and now this? How sad that her diet has been restricted for so long and she

still has to have her colon removed? I am freaking out! Are there more people

like this and are those who feel better, are they really healed or is it a

placebo effect? I'm sorry all, I am just having a hard time with this message!

> >

>

> Please don't freak out. The reason she still has her colon is the diet! She

was on the verge of surgery before. She started Remicade at that time. It truly

is a healing diet. I think having had c.diff. plus all the hormonal changes at

her age has had an effect.

>

>

[Guest guest]

At 10:38 AM 6/18/2010, you wrote:

To the rest of the group, this

scares the crap out of me! 7.5 YEARS on SCD and now this? How sad that

her diet has been restricted for so long and she still has to have her

colon removed? I am freaking out! Are there more people like this and are

those who feel better, are they really healed or is it a placebo effect?

I'm sorry all, I am just having a hard time with this

message!

,

First of all, remember that surgeons do surgery. Their mind set is thus

that surgery is the solution for everything. It's also going to be the

first thing they recommend when any issue comes up. Remember, too, that

gastroenterologists do not believe that diet has anything to do with our

gut issues.

I can tell you flatly that I would not be here now if it were not for

SCD.

SCD began to normalize my weight, which was over 400 pounds when I

started. SCD made it worth living when it had gotten to the point that I

didn't want to, because I couldn't even avoid having filthy underwear 2-3

times a day when I was in my own home. (I slept with a pee pad in the bed

because of the diarrhea, and put pee pads on the floor between me and the

bathroom when I inevitably had to get up. Our bathroom was filthy all the

time because of my accidents.

Now, I admit that my house is chaotic because I would rather cook than

clean, and my back doesn't like it when I clean, besides. (I need to get

someone in to help me sort, and ask the horrid question, " Do you

REALLY need those formals you wore in high school? " and similar

commentary, and so whom I can say, " Aagh, don't let me see it

leave.... " )

I haven't had accidents in years. I did have cancer surgery (uterine,

caused, in part, by the hormonal screw-ups courtesy of the years and

years of obesity), but my surgeons were stunned by how well I came

through the surgery and how quickly I healed. In fact, my oncologist

commented that she wished she could put all her patients on my

diet.

I don't consider my diet restricted. It was, in the beginning, as I was

healing. But not now. I mean, goodness gracious! This week, I've had

roast turkey, and lamb roast with tzatsiki, and bacon cheeseburgers, and

baked pork ribs with a Caesar salad, and today it will be catfish pecan

with brie spinach. I eat better on SCD than I ever did off it, because I

can't be lazy. I have to be creative! I've chosen to remain SCD because I

like the food, even though I could probably add some stuff back in.

Certainly, I'm a little less fanatical now than I was once, particularly

when I eat out. But I like SCD food!

SCD does heal -- but with as horrid as the modern standard diet is, it's

unlikely that we will be able to return to it unless we want to get sick

again. But once we are are healed, we should look to something much

healthier, like the Weston-Price traditional foods, which are, in their

own way, just as restrictive as SCD, because you still have to Make Your

Own.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

Babette the Foundling Beagle

[Guest guest]

Hi ,

What is the basis for the colon removal?

Is she completely malnourished?

How are her symptoms?

I think GI's are still way to quick to put UC and CD patients into surgery. Of

course, I don't know your daughters situation-

I had C Diff myself for years and it is a friggen nightmare- sometimes Steroids

are necessary but treating C Diff with it can actually make the person worse

since the immune system is compromised and has a hard time eradicating the C

Diff. Is she a candidate for fecal transplantation? My GI actually refers

patients that have systemic positive C Diff results to get this done. Of course

her colon would be inflamed if she has C Diff on and off.

I battled it for about 8 years.

I also, don't dis surgery- I had an ileocolic resection in May of 2009.

Also, everyone else reading this message.. please calm down.

Elaine herself said that the diet may not work for everyone.

- I am not saying this is applicable to your daughter at all.

All I am trying to say is let's please hold space that everyone's health

challenges are unique and we all don't react the same exact way...

Jodi

>

>

> > To the rest of the group, this scares the crap out of me! 7.5 YEARS on SCD

and now this? How sad that her diet has been restricted for so long and she

still has to have her colon removed? I am freaking out! Are there more people

like this and are those who feel better, are they really healed or is it a

placebo effect? I'm sorry all, I am just having a hard time with this message!

> >

>

> Please don't freak out. The reason she still has her colon is the diet! She

was on the verge of surgery before. She started Remicade at that time. It truly

is a healing diet. I think having had c.diff. plus all the hormonal changes at

her age has had an effect.

>

>

[Guest guest]

Has she ever tried s.boulardi for the c diff? My ND says that it will cure it. Katy

____________________________________________________________Refinance Now 4.0% FIXED!$160,000 Mortgage for $633/mo. Free. No Obligation. Get 4 Quotes!Mortgage.LendGo.com

[Guest guest]

But once we are are healed, we should look to something much healthier, like the Weston-Price traditional foods, which are, in their own way, just as restrictive as SCD, because you still have to Make Your Own.I'll probably go by the Primal Blueprint once I'm healed. Maybe some Nourishing Traditions/Weston Price stuff thrown in there. Can't wait till that day comes =) Cheers!Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 75 mg 1x per dayPrednisone 20 mg 1x per day

[Guest guest]

>From: BTVC-SCD (on behalf of " blackguitarmaker "

>

>thank you for explaining!! I was on my way to the icecream stand!!! LOL

LOL Eileen.

Mara

[Guest guest]

At 03:06 PM 6/18/2010, you wrote:

I'll probably go by the Primal

Blueprint once I'm healed. Maybe some Nourishing Traditions/Weston Price

stuff thrown in there. Can't wait till that day comes

=)

I'll have to look at Primal Blueprint. I have, and enjoy

reading Nourishing Traditions.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

Babette the Foundling Beagle

[Guest guest]

I'm (slowly) reading a fistful of other books on diet and health. Not

because I am in any way dissatisfied with SCD but because each offers a

slightly different perspective on getting well. The mitochondrial

failure, I definitely have. From an endocrinology point of view,

which could apply to anyone, etc etc. The interesting thing about

them is that no matter what they are trying to tweak or heal, they

ALL point the same way as far as diet goes: some sort of basic, paleo

diet. Some of the ones not concerned with gut dysbiosis allow some

of the starches we cannot have, but all are wholeheartedly against any

SAD sort of diet, and all would echo Marilyn's " Make Your

Own " .

SCD does heal -- but with as horrid as the modern standard diet is, it's unlikely that we will be able to return to it unless we want to get sick again. But once we are are healed, we should look to something much healthier, like the Weston-Price traditional foods, which are, in their own way, just as restrictive as SCD, because you still have to Make Your Own.

— Marilyn

[Guest guest]

Hi Alyssa,

Big NT fan sans whole grains!

What is Primal Blueprint?

Jodi

>

> > But once we are are healed, we should look to something much

> > healthier, like the Weston-Price traditional foods, which are, in

> > their own way, just as restrictive as SCD, because you still have to

> > Make Your Own.

>

>

> I'll probably go by the Primal Blueprint once I'm healed. Maybe some

> Nourishing Traditions/Weston Price stuff thrown in there. Can't wait

> till that day comes =)

>

> Cheers!

> Alyssa 16 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> Azathioprine 75 mg 1x per day

> Prednisone 20 mg 1x per day

>

[Guest guest]

Rice, quinoa, buckwheat aren't scary like wheat/ whole wheat stuffs.

Jodi

> >

> > > But once we are are healed, we should look to something much

> > > healthier, like the Weston-Price traditional foods, which are, in

> > > their own way, just as restrictive as SCD, because you still have to

> > > Make Your Own.

> >

> >

> > I'll probably go by the Primal Blueprint once I'm healed. Maybe some

> > Nourishing Traditions/Weston Price stuff thrown in there. Can't wait

> > till that day comes =)

> >

> > Cheers!

> > Alyssa 16 yo

> > UC April 2008, dx Sept 2008

> > SCD June 2009 (restarted)

> > Azathioprine 75 mg 1x per day

> > Prednisone 20 mg 1x per day

> >

>

[Guest guest]

Marilyn,

Sorry.. I don't want to encourage or veer into too much OT conversation about

grains and such.. fact is it is SCD legal period.

So for all you new folks reading please disregard as I wasn't eloquent with

expressing my thoughts to Alyssa.

Jodi

> > >

> > > > But once we are are healed, we should look to something much

> > > > healthier, like the Weston-Price traditional foods, which are, in

> > > > their own way, just as restrictive as SCD, because you still have to

> > > > Make Your Own.

> > >

> > >

> > > I'll probably go by the Primal Blueprint once I'm healed. Maybe some

> > > Nourishing Traditions/Weston Price stuff thrown in there. Can't wait

> > > till that day comes =)

> > >

> > > Cheers!

> > > Alyssa 16 yo

> > > UC April 2008, dx Sept 2008

> > > SCD June 2009 (restarted)

> > > Azathioprine 75 mg 1x per day

> > > Prednisone 20 mg 1x per day

> > >

> >

>

[Guest guest]

> Marilyn,

>

> Sorry.. I don't want to encourage or veer into too much OT conversation about

grains and such.. fact is it is SCD legal period.

Oopsie, Jodi. Typo!!

Mara

[Guest guest]

Oyy VEI!!

Correction:

ILLEGAL.

My goodness me, time for dinner obviously- because I be going a bit wonky...

evidence in thy typing.

Or I just may need to isolate myself with a dunce cap.

Jodi

> > > >

> > > > > But once we are are healed, we should look to something much

> > > > > healthier, like the Weston-Price traditional foods, which are, in

> > > > > their own way, just as restrictive as SCD, because you still have to

> > > > > Make Your Own.

> > > >

> > > >

> > > > I'll probably go by the Primal Blueprint once I'm healed. Maybe some

> > > > Nourishing Traditions/Weston Price stuff thrown in there. Can't wait

> > > > till that day comes =)

> > > >

> > > > Cheers!

> > > > Alyssa 16 yo

> > > > UC April 2008, dx Sept 2008

> > > > SCD June 2009 (restarted)

> > > > Azathioprine 75 mg 1x per day

> > > > Prednisone 20 mg 1x per day

> > > >

> > >

> >

>

[Guest guest]

I'll have to look at Primal Blueprint. You really should; there is a book on it, but if you don't want to buy it you can basically get everything from the blog Mark's Daily Apple. To me, it makes a lot of logical sense, like SCD does, and they hate grains and sugar too Cheers!Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 75 mg 1x per dayPrednisone 20 mg 1x per day

[Guest guest]

>

> Hello, my 15 yo daughter with UC has been referred to surgery for colon

removal. Not happy at all! Scope last Thurs. showed totally inflamed colon. She

had gone into a flare 1 mo. prior. Dr. put her back on 60 mg prednisone. I

tried to get him to try LDN but he won't because he says there are no case

studies for UC. I have complete faith in the diet, she's been on 7.5 years,

with 4 fantastic years of good health. We're down to surgery because she's been

thru every med there is (Humira most recently). I am in process of trying to

find a GI to give 2nd opinion and be willing to try LDN. Any thoughts are

welcomed.

>

> Thanks, in IN

> 15 yo daughter UC 9 yrs, SCD 7.5 yrs, 60 mg pred(1 wk), Pentasa, lyosan

acidophilus, SCD multi, SCD B complex, folic acid, SCD calcium, vit.D

>

,

I've told my story several times on this list, so bear with me again. My colon

was so inflamed that my digestive system completely shut down. It took three

weeks on IV steroids before the inflammation was sufficiently calmed so that I

could begin to digest my food. I was told by my doctors that with the IV

steroids they could do much more than they could with oral Prednisone. The chief

Gastro doc at the hospital insisted that my only hope for long-term remission

was to let them take my colon. I refused of course.

I had started on the SCD immediately after my diagnosis, but the inflammation

was so intense that I was unable to make any headway.I had to include the IV

steroids and IV nutrition in order not to starve.

After my discharge I restarted my fanatical adherence to SCD.

I'm something of a radical in that I think that some of the bacteria that are

causing our problems might be able to mutate into forms that just may get enough

sustenance from our legal foods to stay alive and active. The basic strategy to

get well must be to Kill them.

I waged war on my bugs with lactoferrin, oregano oil, grapefruit seed extract

and monolaurin. I tolerated all of them, others may not. I started slowly, one

at a time. I defeated my Crohn's bugs in about eighteen months. Had I known

about Active Manuka Honey at the time, I would have used it too, since it has

been proven to kill MRSA and H Pylori.

Les

[Guest guest]

Big NT fan sans whole grains!What is Primal Blueprint?Google Mark's Daily Apple. It's basically a lifestyle based on the theory on evolution, trying to eat, exercise, etc...like humans would've evolved to. They talk a lot about exercise on there, since it is a whole lifestyle, but diet is also a major part. It's basically SCD legal except they think occasional starchy (SCD illegal) roots like sweet potatoes are fine, since they aren't dealing with gut woes =) The only annoying thing (to me) is that everyone's always talking about ways to lose weight on there, which I obviously don't need =) Cheers!Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 75 mg 1x per dayPrednisone 20 mg 1x per day

[Guest guest]

Maybe not, gluten being the problem it is. However, I will say

this. Last summer when I found SCD I was very nearly on the diet

after 27 years of inadvertent trial and error; all except I was using

rice which had been recommended as the good bland basis for IBS. (And it

may be fine if you don't have dysbiosis.) So I read the diet,

dropped the rice, and started feeling better about 3-4 days later! Even

without getting illegals out of my supplements. (And I was thrilled

to drop the rice. I HATE rice, especially 3 times a day.)

Rice, quinoa, buckwheat aren't scary like wheat/ whole wheat

stuffs.

Jodi

[Guest guest]

At 06:50 PM 6/18/2010, you wrote:

Sorry.. I don't want to

encourage or veer into too much OT conversation about grains and such..

fact is it is SCD legal period.

So for all you new folks reading please disregard as I wasn't eloquent

with expressing my thoughts to Alyssa.

Check.

All grains are SCD-illegal.

BUT: when we are healed, we can consider adding things back in that would

have thrown us for a tizzy in earlier days. (And then again, there are

some folks, like me, who just like sticking with SCD....)

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

Babette the Foundling Beagle

[Guest guest]

(And I was thrilled to drop the rice. I HATE rice, especially 3 times a day.)Lol no kidding! Before I was SCD, I was gluten free, but I never had any of the yummy gluten free stuff made out of rice flour and tapioca starch and other refined junk. I would only eat whole grains, and let me tell you, I made some of the most disgusting things, from millet muffins to quinoa cake...ugh. And I always made myself eat them, because I was vegetarian so whole grains were the 'healthy' base of my diet. I was SO HAPPY when I got on the SCD an didn't have to deal with horrible gluten free baked-bads anymore!! Cheers!Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 75 mg 1x per dayPrednisone 20 mg 1x per day

[Guest guest]

It's nice to know that maybe, someday, we will be able to try a few

things. Cautiously. I've actually been surprised that I don't miss

them at all. I seldom even bother to eat the legal squashes.

All grains are SCD-illegal.

BUT: when we are healed, we can consider adding things back in that would have thrown us for a tizzy in earlier days. (And then again, there are some folks, like me, who just like sticking with SCD....)

Marilyn