Re: Quitting SCD?????

February 2, 2009

Hi

I had to take the 6MP to get off the Prednisone. I was on 100 mg a day. I'm down to 50mgs every 3 days.

All The Best, Lou

Question for the elders....What medications have members or theirfamily members been able to successfully "weem" from? I am nottalking just about steroids or 5 ASA's but immunmodulators(imuran/6mp/methotrexate), biologics (remicade/humira)? Stay up to date on the latest news - from sports scores to stocks and so much more.

February 2, 2009

By what reasoning did you come up with the idea that Elaine was

anti-medication, and that SCD won't work with medication?

By what reasoning does it follow that healing the gut (which does take

time) will not also heal the inflammation? Inflammation is a response to

injury -- if you heal the injury, the inflammation will go away.

As for carrots... Hades, I couldn't do carrots for at least six months

into the diet!

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

February 2, 2009

NO NOT AT ALL....These are questions. I do not mean to sound like a

quitter....Hence why I came to this place for help in understanding

what is going on because I could not find the answers in the book and

we know Dr.s don't have them! I want to do this and I know it takes

time! I needed something to hold on to and I know no one on this site

would recommend coming of my meds. That would be irresponsible on

their part and dangerous.

I just got off the phone with some one who gave me great advice about

L-GLutamine supplementation and Digestive Enzymes. Things I had read

about but didn't know if they were SCD legal or not. And

unfortunately steroids and remicade are only some of the items on my

medical regime. I try to keep the list low but I cannot get them

compounded here to meet my needs. I know the book addresses this as

trivial in comparison to no meds.....

I know this place is for support and unfortunately I need a lot of it

at the moment. The biggest issue was my Dr.s appointment

today....they put me back on steroids and said your dependent right

now. DEPRESSING to say the least when you look at what this medicine

does/long term effects.

I posted a message earlier thanking all of you for exactly

this...SUPPORT and the occasionally yelling and screaming at people

like me.

I need to remind myself as was just stated to me " Rome was not built

in one day... " But these meds work in one day and honestly makes me

angry more than anything.

FORGIVE me for the hesitation and mild case of depression but his is

honestly therapeutic for me to get answers from people who obviously care.

February 2, 2009

My husband has both crohns and diverticulitis but and has

taken both the medications( prednisone and anti-biotics) at the same

time as concentrating on the scd diet. He has had great relief and

is very slowly reducing his steroids without any major problems, if

he feels he is losing control, he cuts back on his nut flour intake,

but he stays focused and is winning the battle. I know it is hard

because I see what he goes through and I spend most weekends helping

him cook snack foods for during the week. We experiment a lot with

how much honey we use because some of the recipes seem too sweet for

us. We eat lots of very basic foods like meat and vegies or salad

and he is lucky to be able to eat most things but you can do it. He

had 3 months off work with his last flare and it has taken all that

time to get to where he is but his health is worth it.

Keep going!!!!

Jena

>

> Question for the elders....What medications have members or their

> family members been able to successfully " weem " from? I am not

> talking just about steroids or 5 ASA's but immunmodulators

> (imuran/6mp/methotrexate), biologics (remicade/humira)?

>

> I ask b/c I think I'm past SCD help. I believe in it and know it

will

> work but I my disease is too far gone. I found it too late!

> I can't for the sake of truly living, come off my medications at

this

> point and every person I've talked to on this forum, or who

suceeded

> w/ SCD started early and/or on little medication. If I came off my

> steroids right now I would literally die from malnurishment b/c of

my

> type of CD. Without further pharmaceutical help, I cannot get off

of

> the steroids.

>

> SOMEONE PLEASE tell me they were on some strong meds and able to

> succeed with SCD and be med free.

>

> SCD addresses the cause of our intestinal damage, but what about

> inflammation of the intestines? SCD does not specifically address

> this issue.

>

> AS I said, SCD and it's science/application is proven, but again I

> ASK, WHAT ABOUT THE INFLAMATION?

>

> I can do SCD while on the steroids, yes! And taper the steroids IAW

> Elaines advice and start med free...But SCD will not address the

issue

> of my inflamed small bowel preventing me from absorbing any

> mono/di/polysaccharides. The steroids " mask " too much. Except for

> carrots, I don't do these well no matter what Medication I'm on.

>

> I know I'm getting a little technical but I'm hoping some of you

have

> kept up w/ ongoing CD/UC/Celiac treatments and can provide some

insight.

>

February 2, 2009

Hey

Listen: You are ill. We all are. We wouldn't be here if we weren't.

SCD is not an overnight cure. It takes time, Hard effort, a lot of

work, will power and more time. Not many healthy people would do such

an extreme diet- unless those same healthy people have years and years

of suffering in under their belt- like Lucy from the Kitchen Shop.

I have been on many medications... Prednisone always was the thing to

keep me alive but never gave me quality of life. Remicade worked from

keeping me off the surgeons table but I had a bad allergy to it and it

stopped working.. More stories with meds but I don't want to go on

and on.

One Pred stint, I actually experienced a complete and utter meltdown

due to being on Pred long term which caused me severe insomnia for 8-9

months. It was the darkest period of my life. I did odd stuff- and I

don't even remember anything from then. The idea needing to use Pred

for me is beyond terrifying as I never want to experience that kind of

darkness and depression again- yes I had to be heavily medicated.

All of our situations are different and yet the same. Some of us

dealing with illness long term- I have never experienced remission in

my life. Others dealing with the illness for only a short amount of

time but are very very ill. Some are moderately ill. But all of us

want to get better and heal.

Meds save our life.

Use them.

Why shouldn't diet be addressed if we know how harmful modern food and

grains and processed sugars are in our bodies?

Some people find they get their life back on gluten free food for

instance- I have been there done that. Nothing has worked for me diet

wise. I suspect many of us that get thrust into this awful world of

IBD look at diet and immediately take a long look at our food intake

as the culprit- I remember I did just that when I got really sick when

I was a teenager- just to be told by my doc " ehh dairy is not a

problem CD has nothing to do with diet, drink milk it's good for your

bones.. You're female osteo is much higher with women " if I would of

known that my life didn't have to spiral into such sickness and being

bed ridden and so many friggen long hospitalizations.. My goodness.

Anyway, I feel it has so much to do with diet that if these same

doctors were ill themselves they would take a different approach.

You are going to need to start reading a lot.

A lot of this SCD world has taught me to read and research.. Online,

in the library etc.. I am beyond fanatical on this diet and yeah- 17

months in I am a turtle comparing to others food wise but my goodness

I have never been better. I have so many various health problems that

it is just overwhelming at times but this place, these amazing people

constantly help me. I don't know if I could do SCD and be so

committed to getting my life back without all of you.

Anyway, many people use meds on SCD.

For me.. It's been nice that I don't LIVE on Prednsione. I got

seriously ill took my steroids while on SCD and then got off with-in

something like 4 months. This is coming from a person that would be

on Pred minimum for 2 year stints...

SCD takes a lot of courage and will power.

No one is forcing you to do the diet- this has to come from a place

with-in you to want to commit to it and give it a chance.

Take a deep breath..

You're in a place of a lot of people knowing what you are going

through. Many many do. Many are not med free or completely med free.

The worst thing you can do is assume or jump to conclusions.

What's that saying " When you ASSume you make an a$$ out of you and me "

Jodi

February 2, 2009

Marilyn,

Your replies always crack me up!

Thanks for the laughs..

Jodi

BTW Chris: I couldn't do carrots until month 14 on the diet!!

Still I must keep to a minimum!

> As for carrots... Hades, I couldn't do carrots

> for at least six months into the diet!

February 2, 2009

Laughing for once today... Thanks Marilyn as well!

Forgive me of my NEWNESS. I told you I was going to be tough. All I

read was about how people began before the " harsh " medications....In

" remisive " periods of their illnesses. However I had not found this

list yet. So please understand the honest FEAR of a beginner that

really is full of hope. I know that their has been people in worse

shape than me that you all and SCD has helped.

The rest of my story is this....I am currently Active Duty United

States Air Force. I have served for 6 years and want to continue my

service. I obviously cannot do this w/ Crohn's Disease. In the near

future I will be losing my job which has supported my family and is

still needed by my family for the past 6 years. My family will have

to relocate to Washington State, where my wife's family resides and

attempt to continue our lives. I KNOW GOD WILL PROVIDE FOR ME AND MY

FAMILY THOUGH!! Still a little overwhelming.

I apologize if I am a little inpatient! I am angry that what

((seems)) to be overnight, I became ill; ***However, there is nothing

overnight for any ailment at all is there?*** I know many of you

have/ and will accomplish amazing things regardless of your ailments.

I do not mean to compare. I am just letting you know where I am

mentally as it plays such a huge role in our healing and continues

progression.

I don't assume/or interpret Elaine was " anti-med. " I read carefully

her feelings regarding medication withdraw.

Judi..Thank you for your story. Honestly yours has been the closest o

mine yet...Thank you.

February 3, 2009

Sure.. Don't worry about it.. There are quite a few of us!!

You would not believe the difficulty and suffering people have

encountered here. SCD'ers are very resourceful and committed to

getting better. It's a great group to be around. You will find you

relate to people that are from a different part of the world,

different cultural/religious background.. It's truly awesome and

humbling how this diet is so dear to all of us and we all speak the

same language of working to regain health.. Slowly walking on this

healing journey.

You'll meet some great mentors too..

Make some awesome friends..

I love this place.

Jodi

> Judi..Thank you for your story. Honestly yours has been the closest o

> mine yet...Thank you.

>

February 3, 2009

Hey Mara,

LOVED it that you wrote " dude "

You're like my hero of the day to write that on-list.

LOL'ing..

Jodi

> Dude, that is so not the case!

February 3, 2009

Yes, SCD does address inflammation. My entire digestive system was

inflamed from my stomach to my rectum. I started SCD a month before

realizing I needed to do the intro diet. Just days after starting the

intro diet I was off pain meds and within 2 months I was pain free. I

haven't been back to the doctor to confirm anything but I haven't

needed to go (insurance doesn't cover doctor visits).

I took myself off the meds (Imuran and Pentasa) because the doc said

they weren't working. She said I needed to get on a biological

(Humira or Remicaid) or I'd be in the hospital within a year because

I had very aggressive CD. I could barely afford the Imuran/Pentasa

and there was no way I could afford a biological so that's when I

researched and found SCD. So, though I was never on the strong meds,

SCD kept me from having to go on them so I believe 100% in my heart

that SCD can get you off of them too!!!!

Here I am 1.5 years later and though I'm in a mild/medium flare, I

feel great. If the meds are helping you, don't stop taking them but

don't let the masking of your symptoms speed up your introduction of

foods. Hopefully, you'll be able to wean yourself off of meds after

substantial healing and that's different for everyone. I only had CD

symptoms for about a year before being diagnosed so I'm sure that's

the reason I was able to go without the meds at such an early time

but I do still have problems from time to time and am in no way 100%

healed. I'm hoping that by this time next year, I can say I am

healed!!!!!!

So, hang in there. Progress is slow but it is worth it!!!!!

Misty Kimble

CD – no meds

SCD – 1 year

> Question for the elders....What medications have members or their

family members been able to successfully " weem " from? I am not

talking just about steroids or 5 ASA's but immunmodulators

(imuran/6mp/methotrexate), biologics (remicade/humira)?

>If I came off my steroids right now I would literally die from

malnurishment b/c of my type of CD. Without further pharmaceutical

help, I cannot get off of the steroids.

> SOMEONE PLEASE tell me they were on some strong meds and able to

succeed with SCD and be med free.

> SCD addresses the cause of our intestinal damage, but what about

inflammation of the intestines? SCD does not specifically address

this issue.

February 3, 2009

>

> Question for the elders....What medications have members or their

> family members been able to successfully " weem " from? I am not

> talking just about steroids or 5 ASA's but immunmodulators

> (imuran/6mp/methotrexate), biologics (remicade/humira)?

>

> I ask b/c I think I'm past SCD help. I believe in it and know it will

> work but I my disease is too far gone. I found it too late!

> I can't for the sake of truly living, come off my medications at this

> point and every person I've talked to on this forum, or who suceeded

> w/ SCD started early and/or on little medication. If I came off my

> steroids right now I would literally die from malnurishment b/c of my

> type of CD. Without further pharmaceutical help, I cannot get off of

> the steroids.

>

> SOMEONE PLEASE tell me they were on some strong meds and able to

> succeed with SCD and be med free.

>

> SCD addresses the cause of our intestinal damage, but what about

> inflammation of the intestines? SCD does not specifically address

> this issue.

>

> AS I said, SCD and it's science/application is proven, but again I

> ASK, WHAT ABOUT THE INFLAMATION?

>

> I can do SCD while on the steroids, yes! And taper the steroids IAW

> Elaines advice and start med free...But SCD will not address the issue

> of my inflamed small bowel preventing me from absorbing any

> mono/di/polysaccharides. The steroids " mask " too much. Except for

> carrots, I don't do these well no matter what Medication I'm on.

>

> I know I'm getting a little technical but I'm hoping some of you have

> kept up w/ ongoing CD/UC/Celiac treatments and can provide some insight.

>

Hello,

I have UC and came to the diet after becoming very ill and being on many meds,

I'm 1 1/2

yrs on SCD now but still taking some asacol for good measure, I was on pred,

taking

enemas of mesalamine and suppositories and pills, whatever would seem to keep

the

bleeding in control (my most difficult symptom to alleviate) it's been about 3

years since

my hospitilization and I seem to be in remission. I would like to be off meds

but all in

good time I hope. I recommend being as patient as possible, being kind to

yourself and

taking it as slow as you need to...if the drugs help, then embrace them.

I do think the diet is helping me, but the inflammation took a long time to

arrive and no

doubt will heal slowly as well

good luck

Debo

uc 3 yrs

scd 1 1/2 yr

February 3, 2009

Misty...Thank you for sharing your story! That was what I needed. I

am on the intro DAY 1 starting today. SLOW AND STEADY.

I do have a question about intro of foods. When you intro foods, do

you just look for changes in bowel habits, pain and gas? I've never

had a problem w/ pain or gas, just diarrhea? I made soup and cannot

do carrots, they come out as they went in. I'm going to try green

beans while on the intro.

Can cheese be intro'd relatively early? It's on the intro so I assume

the answer is yes. I am not a big fan of DCCC, plain so I substituted

Cheddar. (I put it in my beef patties.)

Day 1-Intro Breakfast

3 Poached Eggs

Grape Juice

Beef Patty w/ Cheddar

Day 1-Lunch Plans

Beef Patty w/ Cheddar

Green Beans

Juice

Snack- Chicken in broth (No carrots)

Day 1- Dinner

Baked Chicken

Green Beans 1 tsp of honey

Jello and Juice Popsicle

Please analyze and let me know what you think?

The soup causes me more issues (gurgling tummy) than just eating the

food. I plan on having SOME soup tomorrow. And that's it. As the

meds have me a little controlled, I plan on only staying on the intro

2 days.

I then want to intro zucchini, avocado, Bananas, and butternut squash.

Two days in b/w each new food. Will change as necessary. I want to

intro " heavier " foods first as I need to gain/maintain weight as much

as possible.

When is it o.k. to pan cook with butter and other oils? I *love*

zucchini panned cooked in some butter or coconut oil. AS I said we

cooked SCD before I **Officially** began it.

Again Thanks friends and God Bless. Please feel free to e-mail any

suggestions/tips. Thanks to those of you who have.

February 3, 2009

> I do have a question about intro of foods. When you intro foods, do

> you just look for changes in bowel habits, pain and gas? I've never

> had a problem w/ pain or gas, just diarrhea? I made soup and cannot

> do carrots, they come out as they went in. I'm going to try green

> beans while on the intro.

I have CD with constipation. Every one once in a while I have D. My

problems with CD are mostly gas and pain. That's what I look for.

Since you have D, I would think you would look for changes in your

bowel movements. I've noticed the improvement most people on here see

with D is that they go to the restroom less (from 20 to 10 times a

day and reducing after that until finally they have formed bowels).

> Can cheese be intro'd relatively early? It's on the intro so I

> assume the answer is yes. I am not a big fan of DCCC, plain so I

> substituted Cheddar. (I put it in my beef patties.)

I can't find DCCC here in Baton Rouge. The first cheese I could

tolerate was Colby Jack and that was about 2 weeks into the diet.

> Day 1-Intro Breakfast

> 3 Poached Eggs

> Grape Juice

> Beef Patty w/ Cheddar

>

> Day 1-Lunch Plans

> Beef Patty w/ Cheddar

> Green Beans

> Juice

>

> Snack- Chicken in broth (No carrots)

>

> Day 1- Dinner

> Baked Chicken

> Green Beans 1 tsp of honey

> Jello and Juice Popsicle

I only tolerate french cut green beans. So far, to me it looks good

as long as YOU are tolerating everything. This looks much like what I

ate at first. Though, I would have eaten at least 2 more times in a

day. I ate 5-6 meals a day. Boiled eggs worked very nicely for me

too. And, homemade grape geletin. Make sure your juices are at least

50/50 juice/water ratio. Full power juice caused immediate pain at

first. I still mostly drink it 50/50 but occassionaly I drink it full

strength and have no problems.

> The soup causes me more issues (gurgling tummy) than just eating the

> food. I plan on having SOME soup tomorrow. And that's it. As the

> meds have me a little controlled, I plan on only staying on the

> intro 2 days.

I was on the intro much longer. If the soup causes gurgling then it

sounds like you don't tolerate it and I would bypass it. Just make

sure even though you are on meds that you take it slow because they

only MASK the symptoms. They are in no way healing you. You know this

because as soon as you get off the meds, the symptoms come back. SCD

is a slow approach to healing. It took you a long time to get where

you are. You won't be fixed overnight (or 2 months even).

> I then want to intro zucchini, avocado, Bananas, and butternut

> squash. Two days in b/w each new food. Will change as necessary.

> I want to intro " heavier " foods first as I need to gain/maintain

> weight as much as possible.

The food rotation is 3 days. Jumping ahead caused me many setbacks in

the beginning. Those foods sound very tolerable. Eggplant and

cauliflower were very easy on my digestion at first also. Spinach and

broccoli were and still are my enemies. Another thing that was easy

was peeled cooked apples. I would cook them down in a little butter

and honey with cinnamon and when they wer nice and mushy, I would

either make applesauce or pour it over banana pancakes. I still have

that as a treat every once in a while, but I'm trying to watch my

fruit intake since I'm flaring a little right now. Mashed cauliflower

with lots of butter and cheese is still one of my favorite things to

eat.

> When is it o.k. to pan cook with butter and other oils? I *love*

> zucchini panned cooked in some butter or coconut oil. AS I said we

> cooked SCD before I **Officially** began it.

I used olive oil and butter from the beginning. Never had a problem

with them and they really helped me keep the weight on. I never lost

anything while on SCD. I maintained 1 weight the first 6 months when

I went into my first mini flare and gained a little. As long as you

peel the zucchini, pan cooking it should be ok even though overcooked

is optimal in the beginning. I can now eat anything with the skin on

as long as it's cooked (but not overcooked anymore). TEXTURE ROCKS!!!

YAH!!!!

February 3, 2009