Re: Okay... I need some help with several things...

[Guest guest]

Go to Lucy's cook shop on line. She has everything you need there and will ship it all to you. She has probiotics and calcium etc etc.j Hi... just diagnosed with Crohn's on 7/29/10. I am trying to get everything in order to begin this diet. I cannot tolerate dairy, so my first question is what brand of supplements should I buy of acidophilous? Also... what other supplements do I need... and where can I get them?? Not sure what is legal/not legal? Can I take normal meds like tylenol while doing SCD... what about prilosec and birth control?? So confused!! LOL!! I really want to give this diet a good go at it!! I am jus soo confused!! I am still working my way through the book. I'm trying to get everything I need in order before starting... so I don't feel overwhelmed!!Thanks soo much for any helP!!AMY

[Guest guest]

> Can I take normal meds like tylenol while doing SCD... what about prilosec and

birth control??

Hi Amy!

Welcome to the group. tte is right- Lucy's kitchen shop is great!

As for your questions about OTC drugs...

Some people say that ORIGINAL PLAIN tylenol is okay. I wasn't sure so I had my

GI write me a prescription for compounded tylenol (I can give you that info if

you need it). It just depends on how important that is to you- I rely on it a

lot for headaches and pain so I made it a point to get it " legally. "

I'm pretty sure prilosec has some illegals in it, but this is a drug that you

may need. You may want to stay on it and then see, as you progress on the diet,

if you can do without. This goes without saying for all meds for your diagnosis

that you need. (You will see that many of us are still on other drugs like

prednisone, remicade, asacol, etc.).

As for birth control- that's a personal choice. I know there are a few of us

that take it even though it has illegals. I have searched for a pill without

illegals, but it doesn't exist. Have you thought about trying the NuvaRing? I am

about to do that in an effort to cut out my pill. It's supposed to be the exact

same amount of estrogen/progesterone as the pill, so an easy transition.

Good luck getting started! Be sure to ask any more questions you may have.

-Joanna

SCD 9/2009, Crohn's 1992, 20mg Prednisone

P.S. Feeling overwhelmed is perfectly normal- I was a mess my first few months!

Have you seen the movie " & " where drops the chicken she made

on the floor and just loses it and starts crying? Well... that was me for a

while

[Guest guest]

tte already told you about www.lucyskitchen.com. That's where I get my

acidophilus (probiotics), multi and B vitamin. I have taken the calcium from her

too.

You can get Tylenol, birth control and probably prilosec compounded at a

compounding pharmacy if they have illegals in them. Regular Tylenol is supposed

to be OK on SCD though. I'd check the ingredients for birth control and the

prilosec. If you get them compounded you want to tell them no gluten, lactose

starch or sugar.

www.pecanbread.com has supplements page that has a great list of supplements

that can be used on the diet. There is even a legal and illegal list for

medicines that is really helpful when trying to figure things out on your own.

If you post a link to your exact medication or copy and paste the ingredient

list someone will chime in on the legality of it.

Ask away that's what the groups for!!!

When reading the book, don't skip the part about the intro diet. I did and

failed my first time. After no more than 5 days of intro start slowing adding

foods in one at a time to see what you tolerate. pecanbread also has a nice

stage guideline to give you and idea of what I'm talking about.

Good luck to you!!!

Misty Kimble

CD - no meds

SCD - jan 2008

>

> I cannot tolerate dairy, so my first question is what brand of supplements

should I buy of acidophilous? Also... what other supplements do I need... and

where can I get them?? Not sure what is legal/not legal?

> Can I take normal meds like tylenol while doing SCD... what about prilosec and

birth control?? >

> AMY

>

[Guest guest]

Thanks so much for all the advice!! I'm going to go ahead and order the

supplements that I want. I am not going to start the diet until the second week

of september. I am starting a new job at a large university hospital and I have

a week to 10 days of orientation and I'm not sure if I can handle so much

" newness " all at once. LOL! I have to work full time for a couple weeks for

training and then I'll just be doing a couple shifts per week... I think that

would be the best time to introduce the diet. I am trying to get as educated as

possible beforehand.

My birthcontrol is Loesterin 24. I also take zoloft and zyrtec on a regular

basis. I'd love to hear thoughts on these drugs being legal/illegal.

> >

> > I cannot tolerate dairy, so my first question is what brand of supplements

should I buy of acidophilous? Also... what other supplements do I need... and

where can I get them?? Not sure what is legal/not legal?

> > Can I take normal meds like tylenol while doing SCD... what about prilosec

and birth control?? >

> > AMY

> >

>

[Guest guest]

I use the Ortho Evra Patch for birth control.. Since it is absorbed through the skin I never thought if there was illegals in it...

To: BTVC-SCD Sent: Mon, August 16, 2010 7:00:22 PMSubject: Re: Okay... I need some help with several things...

> Can I take normal meds like tylenol while doing SCD... what about prilosec and birth control?? Hi Amy!Welcome to the group. tte is right- Lucy's kitchen shop is great!As for your questions about OTC drugs...Some people say that ORIGINAL PLAIN tylenol is okay. I wasn't sure so I had my GI write me a prescription for compounded tylenol (I can give you that info if you need it). It just depends on how important that is to you- I rely on it a lot for headaches and pain so I made it a point to get it "legally."I'm pretty sure prilosec has some illegals in it, but this is a drug that you may need. You may want to stay on it and then see, as you progress on the diet, if you can do without. This goes without saying for all meds for your

diagnosis that you need. (You will see that many of us are still on other drugs like prednisone, remicade, asacol, etc.).As for birth control- that's a personal choice. I know there are a few of us that take it even though it has illegals. I have searched for a pill without illegals, but it doesn't exist. Have you thought about trying the NuvaRing? I am about to do that in an effort to cut out my pill. It's supposed to be the exact same amount of estrogen/progesterone as the pill, so an easy transition.Good luck getting started! Be sure to ask any more questions you may have.-JoannaSCD 9/2009, Crohn's 1992, 20mg Prednisone P.S. Feeling overwhelmed is perfectly normal- I was a mess my first few months! Have you seen the movie " & " where drops the chicken she made on the floor and just loses it and starts crying? Well... that was me for a while

[Guest guest]

Could someone please tell me if you have Ulcerative Colitis you have to be on this diet for the rest of your life? Does that mean traveling and eating out is possible? Or are you cured if you do this diet for two years? Please let me know.Thanks so much for all the advice!! I'm going to go ahead and order the supplements that I want. I am not going to start the diet until the second week of september. I am starting a new job at a large university hospital and I have a week to 10 days of orientation and I'm not sure if I can handle so much "newness" all at once. LOL! I have to work full time for a couple weeks for training and then I'll just be doing a couple shifts per week... I think that would be the best time to introduce the diet. I am trying to get as educated as possible beforehand.My birthcontrol is Loesterin 24. I also take zoloft and zyrtec on a regular basis. I'd love to hear thoughts on these drugs being legal/illegal. > >> > I cannot tolerate dairy, so my first question is what brand of supplements should I buy of acidophilous? Also... what other supplements do I need... and where can I get them?? Not sure what is legal/not legal? > > Can I take normal meds like tylenol while doing SCD... what about prilosec and birth control?? > > > AMY> >>

[Guest guest]

Could someone please tell me if you have Ulcerative Colitis you have to be on this diet for the rest of your life? Does that mean traveling and eating out is possible? Or are you cured if you do this diet for two years? Please let me know.There's no steadfast answer that anyone can give you. Some of us could be on this diet for the rest of their life and still have occasional issues, and some of us could be on this diet for a year, go back to eating other things, and never look back. It's purely individual, so unfortunately there's no right answer =( Cheers!Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Prednisone 10 mg 1x per day (trying to wean!!!!)

[Guest guest]

Thanks Alyssa. Could someone please tell me if you have Ulcerative Colitis you have to be on this diet for the rest of your life? Does that mean traveling and eating out is possible? Or are you cured if you do this diet for two years? Please let me know.There's no steadfast answer that anyone can give you. Some of us could be on this diet for the rest of their life and still have occasional issues, and some of us could be on this diet for a year, go back to eating other things, and never look back. It's purely individual, so unfortunately there's no right answer =(Cheers!Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Prednisone 10 mg 1x per day (trying to wean!!!!)

[Guest guest]

I have only been on it for just over one month and I went in thinking "just two years ...just two years" but the more you read the more you will see that some have come to realize that they may have to change the way they eat for the rest of their life... Some find a balance between the two differences of how they used to eat and how you will eat with SCD.... I pray that at two years my body will be healed enough to enjoy SOME of the foods I left behind.. But I am keeping an open mind now that there may be some foods that I will never go back to.. Or never to the amount of what I was having before..

And Yes I have UC.. diagnosed in September of 09 and started SCD July 12 2010.. Had fully formed BMs at 30 days... noticed an improvement in only one week..

Traveling and eating out is possible just takes some planning and speaking up at reasturants...

The intro is so few foods and if you fix most of it on Sunday like I do... HEY it is a week of not having to cook... I used to see it as.... NO MORE FAST SANDWICHES for supper.... Busy weekends making yogart and lunches.. but makes for easier evenings after work during the week..

Best of luck to you..

To: BTVC-SCD Sent: Mon, August 16, 2010 9:06:59 PMSubject: Re: Re: Okay... I need some help with several things...

Could someone please tell me if you have Ulcerative Colitis you have to be on this diet for the rest of your life? Does that mean traveling and eating out is possible? Or are you cured if you do this diet for two years? Please let me know.

Thanks so much for all the advice!! I'm going to go ahead and order the supplements that I want. I am not going to start the diet until the second week of september. I am starting a new job at a large university hospital and I have a week to 10 days of orientation and I'm not sure if I can handle so much "newness" all at once. LOL! I have to work full time for a couple weeks for training and then I'll just be doing a couple shifts per week... I think that would be the best time to introduce the diet. I am trying to get as educated as possible beforehand.My birthcontrol is Loesterin 24. I also take zoloft and zyrtec on a regular basis. I'd love to hear thoughts on these drugs being legal/illegal. > >> > I cannot tolerate dairy, so my first question is what brand of supplements should I buy of acidophilous? Also... what other supplements do I need... and where can I get them?? Not sure what is legal/not legal? > > Can

I take normal meds like tylenol while doing SCD... what about prilosec and birth control?? > > > AMY> >>

[Guest guest]

At 09:02 PM 8/16/2010, you wrote:

I use the Ortho Evra Patch for

birth control.. Since it is absorbed through the skin I never thought if

there was illegals in it...

Since it is not going into the gut, it's fine.

—

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 are you on any drugs?

I have only been on it for just over one month and I went in thinking "just two years ...just two years" but the more you read the more you will see that some have come to realize that they may have to change the way they eat for the rest of their life... Some find a balance between the two differences of how they used to eat and how you will eat with SCD.... I pray that at two years my body will be healed enough to enjoy SOME of the foods I left behind.. But I am keeping an open mind now that there may be some foods that I will never go back to.. Or never to the amount of what I was having before..

And Yes I have UC.. diagnosed in September of 09 and started SCD July 12 2010.. Had fully formed BMs at 30 days... noticed an improvement in only one week..

Traveling and eating out is possible just takes some planning and speaking up at reasturants...

The intro is so few foods and if you fix most of it on Sunday like I do... HEY it is a week of not having to cook... I used to see it as.... NO MORE FAST SANDWICHES for supper.... Busy weekends making yogart and lunches.. but makes for easier evenings after work during the week..

Best of luck to you..

To: BTVC-SCD Sent: Mon, August 16, 2010 9:06:59 PMSubject: Re: Re: Okay... I need some help with several things... Could someone please tell me if you have Ulcerative Colitis you have to be on this diet for the rest of your life? Does that mean traveling and eating out is possible? Or are you cured if you do this diet for two years? Please let me know.

Thanks so much for all the advice!! I'm going to go ahead and order the supplements that I want. I am not going to start the diet until the second week of september. I am starting a new job at a large university hospital and I have a week to 10 days of orientation and I'm not sure if I can handle so much "newness" all at once. LOL! I have to work full time for a couple weeks for training and then I'll just be doing a couple shifts per week... I think that would be the best time to introduce the diet. I am trying to get as educated as possible beforehand.My birthcontrol is Loesterin 24. I also take zoloft and zyrtec on a regular basis. I'd love to hear thoughts on these drugs being legal/illegal. > >> > I cannot tolerate dairy, so my first question is what brand of supplements should I buy of acidophilous? Also... what other supplements do I need... and where can I get them?? Not sure what is legal/not legal? > > Can

I take normal meds like tylenol while doing SCD... what about prilosec and birth control?? > > > AMY> >>

[Guest guest]

oh yes.. Like I said I have only been on for one month.. and my doctor like most doctors did not even give it a second thought but did agree to let me reduce my Asacol 6 months from now..

Crazy because I was put on pred when the Asacol was not working.. I am off the pred.. the Imuran is said not to really be working until after a few months taking it.. and it has only been one month.. So I have nothing else to contribute the good changes to except the diet..

imuran

asacol

potasium supplements (temporary.. mostly because I sweat SOO much with work and don't drink like I should) charlie horses all summer long

and SCD multi vitamin B complex

To: BTVC-SCD Sent: Mon, August 16, 2010 9:30:16 PMSubject: Re: Re: Okay... I need some help with several things...

And are you on any drugs?

I have only been on it for just over one month and I went in thinking "just two years ...just two years" but the more you read the more you will see that some have come to realize that they may have to change the way they eat for the rest of their life... Some find a balance between the two differences of how they used to eat and how you will eat with SCD.... I pray that at two years my body will be healed enough to enjoy SOME of the foods I left behind.. But I am keeping an open mind now that there may be some foods that I will never go back to.. Or never to the amount of what I was having before..

And Yes I have UC.. diagnosed in September of 09 and started SCD July 12 2010.. Had fully formed BMs at 30 days... noticed an improvement in only one week..

Traveling and eating out is possible just takes some planning and speaking up at reasturants...

The intro is so few foods and if you fix most of it on Sunday like I do... HEY it is a week of not having to cook... I used to see it as.... NO MORE FAST SANDWICHES for supper.... Busy weekends making yogart and lunches.. but makes for easier evenings after work during the week..

Best of luck to you..

To: BTVC-SCD Sent: Mon, August 16, 2010 9:06:59 PMSubject: Re: Re: Okay... I need some help with several things...

Could someone please tell me if you have Ulcerative Colitis you have to be on this diet for the rest of your life? Does that mean traveling and eating out is possible? Or are you cured if you do this diet for two years? Please let me know.

Thanks so much for all the advice!! I'm going to go ahead and order the supplements that I want. I am not going to start the diet until the second week of september. I am starting a new job at a large university hospital and I have a week to 10 days of orientation and I'm not sure if I can handle so much "newness" all at once. LOL! I have to work full time for a couple weeks for training and then I'll just be doing a couple shifts per week... I think that would be the best time to introduce the diet. I am trying to get as educated as possible beforehand.My birthcontrol is Loesterin 24. I also take zoloft and zyrtec on a regular basis. I'd love to hear thoughts on these drugs being legal/illegal. > >> > I cannot tolerate dairy, so my first question is what brand of supplements should I buy of acidophilous? Also... what other supplements do I need... and where can I get them?? Not sure what is legal/not legal? > > Can

I take normal meds like tylenol while doing SCD... what about prilosec and birth control?? > > > AMY> >>

[Guest guest]

Hmm interesting. You see I've had it for 12 years and each time you relapse it gets worse and the longer you on are the drugs they start to not work. I've been on rowasa (first outbreak) asacol (worked for a while), rowasa and colozal (for my pregnancy) then 6mp and colozal. What is there left?So you are smart to do the diet now. I should have done it years ago but I love food and to have a good time and travel and party and cook and somehow "would you like some tasteless chicken and carrot soup" didn't seem a part of that. How long and at what rate were you on the prednisone?I guess I'm just getting depressed because I'm thinking I will be eating five things for the rest of my life. I roasted a chicken last night and stuff it with lemons and it had a bad affect. (3 bms in stead of two today) Can roasting a chicken with lemons really have a bad affect or is it that I'm tapering the prednisone? oh yes.. Like I said I have only been on for one month.. and my doctor like most doctors did not even give it a second thought but did agree to let me reduce my Asacol 6 months from now..Crazy because I was put on pred when the Asacol was not working.. I am off the pred.. the Imuran is said not to really be working until after a few months taking it.. and it has only been one month.. So I have nothing else to contribute the good changes to except the diet..imuranasacolpotasium supplements (temporary.. mostly because I sweat SOO much with work and don't drink like I should) charlie horses all summer longand SCD multi vitamin B complexTo: BTVC-SCD Sent: Mon, August 16, 2010 9:30:16 PMSubject: Re: Re: Okay... I need some help with several things... And are you on any drugs? I have only been on it for just over one month and I went in thinking "just two years ...just two years" but the more you read the more you will see that some have come to realize that they may have to change the way they eat for the rest of their life... Some find a balance between the two differences of how they used to eat and how you will eat with SCD.... I pray that at two years my body will be healed enough to enjoy SOME of the foods I left behind.. But I am keeping an open mind now that there may be some foods that I will never go back to.. Or never to the amount of what I was having before..And Yes I have UC.. diagnosed in September of 09 and started SCD July 12 2010.. Had fully formed BMs at 30 days... noticed an improvement in only one week..Traveling and eating out is possible just takes some planning and speaking up at reasturants...The intro is so few foods and if you fix most of it on Sunday like I do... HEY it is a week of not having to cook... I used to see it as.... NO MORE FAST SANDWICHES for supper.... Busy weekends making yogart and lunches.. but makes for easier evenings after work during the week..Best of luck to you..To: BTVC-SCD Sent: Mon, August 16, 2010 9:06:59 PMSubject: Re: Re: Okay... I need some help with several things... Could someone please tell me if you have Ulcerative Colitis you have to be on this diet for the rest of your life? Does that mean traveling and eating out is possible? Or are you cured if you do this diet for two years? Please let me know.Thanks so much for all the advice!! I'm going to go ahead and order the supplements that I want. I am not going to start the diet until the second week of september. I am starting a new job at a large university hospital and I have a week to 10 days of orientation and I'm not sure if I can handle so much "newness" all at once. LOL! I have to work full time for a couple weeks for training and then I'll just be doing a couple shifts per week... I think that would be the best time to introduce the diet. I am trying to get as educated as possible beforehand.My birthcontrol is Loesterin 24. I also take zoloft and zyrtec on a regular basis. I'd love to hear thoughts on these drugs being legal/illegal. > >> > I cannot tolerate dairy, so my first question is what brand of supplements should I buy of acidophilous? Also... what other supplements do I need... and where can I get them?? Not sure what is legal/not legal? > > Can I take normal meds like tylenol while doing SCD... what about prilosec and birth control?? > > > AMY> >>

[Guest guest]

I am terrible to give any input on this part of it.. i never had the horrible ill feelings that you guys deal with.. I had it for the last few days before they did my second scope.. it was only blood at first.. the pred cut out the sick feeling almost instantly.. I was 40 mg for about a month then took it down by 10 every two weeks.. And yes.. I do believe by changing my diet so fast and after just one simi bad flare.. I am way ahead of the game.. I just know it is making a difference.. It would seem only natural that if you are sick way longer.. it would take way longer to repair the damage..

To: BTVC-SCD Sent: Mon, August 16, 2010 9:50:12 PMSubject: Re: Re: Okay... I need some help with several things...Hmm interesting. You see I've had it for 12 years and each time you relapse it gets worse and the longer you on are the drugs they start to not work. I've been on rowasa (first outbreak) asacol (worked for a while), rowasa and colozal (for my pregnancy) then 6mp and colozal. What is there left? So you are smart to do the diet now. I should have done it years ago but I love food and to have a good time and travel and party and cook and somehow "would you like some tasteless chicken and carrot soup" didn't seem a part of that. How long and at what rate were you on the prednisone?

I guess I'm just getting depressed because I'm thinking I will be eating five things for the rest of my life. I roasted a chicken last night and stuff it with lemons and it had a bad affect. (3 bms in stead of two today) Can roasting a chicken with lemons really have a bad affect or is it that I'm tapering the prednisone?

oh yes.. Like I said I have only been on for one month.. and my doctor like most doctors did not even give it a second thought but did agree to let me reduce my Asacol 6 months from now..

Crazy because I was put on pred when the Asacol was not working.. I am off the pred.. the Imuran is said not to really be working until after a few months taking it.. and it has only been one month.. So I have nothing else to contribute the good changes to except the diet..

imuran

asacol

potasium supplements (temporary.. mostly because I sweat SOO much with work and don't drink like I should) charlie horses all summer long

and SCD multi vitamin B complex

To: BTVC-SCD Sent: Mon, August 16, 2010 9:30:16 PMSubject: Re: Re: Okay... I need some help with several things...

And are you on any drugs?

I have only been on it for just over one month and I went in thinking "just two years ...just two years" but the more you read the more you will see that some have come to realize that they may have to change the way they eat for the rest of their life... Some find a balance between the two differences of how they used to eat and how you will eat with SCD.... I pray that at two years my body will be healed enough to enjoy SOME of the foods I left behind.. But I am keeping an open mind now that there may be some foods that I will never go back to.. Or never to the amount of what I was having before..

And Yes I have UC.. diagnosed in September of 09 and started SCD July 12 2010.. Had fully formed BMs at 30 days... noticed an improvement in only one week..

Traveling and eating out is possible just takes some planning and speaking up at reasturants...

The intro is so few foods and if you fix most of it on Sunday like I do... HEY it is a week of not having to cook... I used to see it as.... NO MORE FAST SANDWICHES for supper.... Busy weekends making yogart and lunches.. but makes for easier evenings after work during the week..

Best of luck to you..

To: BTVC-SCD Sent: Mon, August 16, 2010 9:06:59 PMSubject: Re: Re: Okay... I need some help with several things...

Could someone please tell me if you have Ulcerative Colitis you have to be on this diet for the rest of your life? Does that mean traveling and eating out is possible? Or are you cured if you do this diet for two years? Please let me know.

Thanks so much for all the advice!! I'm going to go ahead and order the supplements that I want. I am not going to start the diet until the second week of september. I am starting a new job at a large university hospital and I have a week to 10 days of orientation and I'm not sure if I can handle so much "newness" all at once. LOL! I have to work full time for a couple weeks for training and then I'll just be doing a couple shifts per week... I think that would be the best time to introduce the diet. I am trying to get as educated as possible beforehand.My birthcontrol is Loesterin 24. I also take zoloft and zyrtec on a regular basis. I'd love to hear thoughts on these drugs being legal/illegal. > >> > I

cannot tolerate dairy, so my first question is what brand of supplements should I buy of acidophilous? Also... what other supplements do I need... and where can I get them?? Not sure what is legal/not legal? > > Can I take normal meds like tylenol while doing SCD... what about prilosec and birth control?? > > > AMY> >>

[Guest guest]

At 09:06 PM 8/16/2010, you wrote:

Could someone please tell me if

you have Ulcerative Colitis you have to be on this diet for the rest of

your life? Does that mean traveling and eating out is possible? Or are

you cured if you do this diet for two years? Please let me

know.

Lol!

No, it doesn't necessarily mean you have to be on SCD for the rest of

your life, although, quite frankly, this is the way I eat, no more and no

less. I'm a trifle less strict about some things than I was in my

early days, but I really don't miss a number of things.

I eat out every Saturday night, at different restaurants with our

friends. I ate out yesterday at a seafood restaurant with my Dad.

There are so many great restaurants in New Orleans that not eating out

would be criminal!

Traveling -- ye ghods!

Every January, I travel up to Atlanta for a science fiction folk music

convention. I stay 100% SCD -- and in fact, the hospitality suite folks

got in legal peanut butter and chilled water for me.

I'd been SCD around 7 months when I traveled to the UK and Ireland for

three weeks. It was an adventure. Just ask me about the beef and broccoli

pie fiasco. But I stayed 100% SCD!

In 2004, I made two, two-week trips to the Canadian Rockies for research.

100% SCD. Including the buffet at the Banff Springs Hotel.

In 2005, I went to Chicago to see a friend receive a life time

achievement award. 100% SCD. Did run into a little bit of a hassle when

someone lied to me about the ingredients in a dish, but that had to do

with my sensitivity to soy, not SCD.

In 2005, I evacuated from New Orleans about four hours ahead of Hurricane

Katrina. I didn't get back for almost six weeks. Didn't have my yogurt

maker. Didn't have yogurt starter. Didn't have a copy of BTVC. Didn't

have nuttin'. Travels included Baton Rouge, Atlanta, and

Birmingham. When I returned to New Orleans, I got to throw out a freezer

full of SCD food and the freezer, as well as throw out the contents of my

refrigerator and the refrigerator. The power was spotty. SCD food

supplies were nonexistent. I drove, every weekend, 100 miles round trip,

across Lake Pontchartrain to get what I needed for around six

months.

In 2007, made another three week car trip. Harry, me, the Dachshund Duo.

New Orleans to Dayton Ohio to Albany to New York. I attended the

Historical Novelists Society Conference, and carried in all my food while

Harry ate the meals that came with my membership. Then to Rochester, New

York (where we ate out with a friend, and I managed to leave my food case

in the hotel, but with some quick thinking on the part of the chef, I

still had an superlative meal). Then on to Toronto, ON for several days

where I ate out and in with friends. Back to Dayton, and then home. Keep

in mind that the Dachshund Duo eats all raw so we have to carry that,

too.

In 2008, I had surgery for endometrial cancer. I was told the hospital's

food service contracts would not allow them to guarantee my food would be

safe for me to consume. I prepared all my food for six weeks in advance,

including all the clear liquids, thick liquids, soft foods, etc. that my

surgeon prescribed for the first week to ten days after the

surgery. 100% SCD, and my husband can now manage baked chicken in

addition to roast beef and roast pork, and peeling zucchini. (When I

started all this, he could burn a mean pot of water.)

In 2009, I went to Chicago, to the Historical Novelists Society

conference, and again took all my foods. No hassles with food at

all.

This year, there have been a number of retirement parties. I've got it

down to a science now -- and the waiters have actually thanked me for

bringing my own food because when they're serving a large party, it's

difficult to insure the kitchen follows orders and that the food is

safe.

My mentor was strict SCD for 2 years, and does not have issues with her

guts at this point. (Other issues from the years of prednisone and other

meds before SCD, but not from her gut.)

My niece was strict SCD for two years and now does gluten-free, as she

did test celiac positive.

Will you be able to do SCD for two years and be cured? Don't know. It all

depends on your system.

I choose to stay SCD because I had 25 years of being sick, and I don't

want to risk going there again.

—

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]

Marilyn,I would like to meet you as your e mails paint you as a real character. I'm a bit of a character too. I guess once I get past the peeled zuccini, carrots, eggs, chicken soup and fish part of the diet it will get better right? I tend to travel further a field where I won't be able to bring all my food but I guess in a few months I can always eat fish, chicken turkey and veggies right and eat at restaurants after I have told them I want nothing on anything right? Also I have to get good at organizing and cooking in advance and oh having some willpower. I presume you don't drink either?tte At 09:06 PM 8/16/2010, you wrote:Could someone please tell me if you have Ulcerative Colitis you have to be on this diet for the rest of your life? Does that mean traveling and eating out is possible? Or are you cured if you do this diet for two years? Please let me know.Lol!No, it doesn't necessarily mean you have to be on SCD for the rest of your life, although, quite frankly, this is the way I eat, no more and no less. I'm a trifle less strict about some things than I was in my early days, but I really don't miss a number of things. I eat out every Saturday night, at different restaurants with our friends. I ate out yesterday at a seafood restaurant with my Dad. There are so many great restaurants in New Orleans that not eating out would be criminal!Traveling -- ye ghods! Every January, I travel up to Atlanta for a science fiction folk music convention. I stay 100% SCD -- and in fact, the hospitality suite folks got in legal peanut butter and chilled water for me. I'd been SCD around 7 months when I traveled to the UK and Ireland for three weeks. It was an adventure. Just ask me about the beef and broccoli pie fiasco. But I stayed 100% SCD!In 2004, I made two, two-week trips to the Canadian Rockies for research. 100% SCD. Including the buffet at the Banff Springs Hotel.In 2005, I went to Chicago to see a friend receive a life time achievement award. 100% SCD. Did run into a little bit of a hassle when someone lied to me about the ingredients in a dish, but that had to do with my sensitivity to soy, not SCD.In 2005, I evacuated from New Orleans about four hours ahead of Hurricane Katrina. I didn't get back for almost six weeks. Didn't have my yogurt maker. Didn't have yogurt starter. Didn't have a copy of BTVC. Didn't have nuttin'. Travels included Baton Rouge, Atlanta, and Birmingham. When I returned to New Orleans, I got to throw out a freezer full of SCD food and the freezer, as well as throw out the contents of my refrigerator and the refrigerator. The power was spotty. SCD food supplies were nonexistent. I drove, every weekend, 100 miles round trip, across Lake Pontchartrain to get what I needed for around six months.In 2007, made another three week car trip. Harry, me, the Dachshund Duo. New Orleans to Dayton Ohio to Albany to New York. I attended the Historical Novelists Society Conference, and carried in all my food while Harry ate the meals that came with my membership. Then to Rochester, New York (where we ate out with a friend, and I managed to leave my food case in the hotel, but with some quick thinking on the part of the chef, I still had an superlative meal). Then on to Toronto, ON for several days where I ate out and in with friends. Back to Dayton, and then home. Keep in mind that the Dachshund Duo eats all raw so we have to carry that, too. In 2008, I had surgery for endometrial cancer. I was told the hospital's food service contracts would not allow them to guarantee my food would be safe for me to consume. I prepared all my food for six weeks in advance, including all the clear liquids, thick liquids, soft foods, etc. that my surgeon prescribed for the first week to ten days after the surgery. 100% SCD, and my husband can now manage baked chicken in addition to roast beef and roast pork, and peeling zucchini. (When I started all this, he could burn a mean pot of water.)In 2009, I went to Chicago, to the Historical Novelists Society conference, and again took all my foods. No hassles with food at all.This year, there have been a number of retirement parties. I've got it down to a science now -- and the waiters have actually thanked me for bringing my own food because when they're serving a large party, it's difficult to insure the kitchen follows orders and that the food is safe.My mentor was strict SCD for 2 years, and does not have issues with her guts at this point. (Other issues from the years of prednisone and other meds before SCD, but not from her gut.)My niece was strict SCD for two years and now does gluten-free, as she did test celiac positive. Will you be able to do SCD for two years and be cured? Don't know. It all depends on your system.I choose to stay SCD because I had 25 years of being sick, and I don't want to risk going there again.— 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]

At 10:13 PM 8/16/2010, you wrote:

I tend to travel further a field

where I won't be able to bring all my food but I guess in a few months I

can always eat fish, chicken turkey and veggies right and eat at

restaurants after I have told them I want nothing on anything right?

Pretty much.... and yes, a certain amount of organization is required. I

can't tell you how many times, especially in the first year or so, I'd

say, " I think I want X for dinner.... oh, framijamit, I don't have

any Y made.... "

As to don't drink... depends on your definition of drinking. I like

wine with a good meal. I love a good whiskey, neat. Pre-SCD, I loved a

dark beer. (And I can now, on occasion, steal a few sips from my

husband's mug with impunity.) I like silver rum. Don't much like bourbon.

Really miss kahlua (which is rather weird, since I don't like coffee),

which is why I was interested in the coconut-mocha ice cream, because I

was wondering if I could ferment coconut-coffee and thicken it like

coconut yogurt, and get a thick drink.... I'm thinking of throwing a shot

of good Irish in my next batch of egg nogg ice cream to see if I can't

keep it a little softer in the freezer, with smaller ice crystals, AND

add a delicious flavor.

My brain is generally running on ways to modify things to SCD. Because,

quite literally, SCD saved my life. And I know it can make an astounding

difference for thousands of people.

—

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 am always leery of poultry at restaurants because some of it is packaged with

broth before it ever gets to the restaurant, so even if they cook it plain- you

get illegals. When I know I am going to visit a place out of town, I scope out

potential restaurants looking for beef and fish items. I call ahead to see if

they are marinated or seasoned before cooking and pick those that are not.

Usually the more expensive cuts of beef are less likely to be marinated. I also

order steamed veggies. I ate mostly cooked veggies for a long time, and

tolerating salads was a huge milestone for me, as most restaurants will bring

you a salad with oil and vinegar on the side ( I ask to make sure it is not

illegal). Some people bring their own dressing in a little jar. It is important

to ask how everything is prepared before and during the restaurant process. I

usually do this ahead of time so I can relax and not be conspicuous at the meal-

and I use the term " food allergies " .

I always travel with a cooler full of legal food so I don't get stuck. I keep

frozen hamburger patties in the freezer because I can grab them and pop them in

the cooler as needed.It does take some preplanning. Once you get the hang of it

though, it does get easier and automatic. We have become a healthier family.

Instead of stopping for fast food on trips, we all bring a lunch in a cooler and

stop at a rest stop. Economical too

When I started SCD about 16 months ago- I also thought " 2 years " , but after

seeing people on this board adopt it for a lifestyle, I plan to do this as well.

I look forward to the day that I can eat out and at other people' homes without

worrying about illegals- but I feel (thankfully) so much better on SCD, I don't

want to go back to the way I was eating before. It does get more routine as you

make it a habit.

I like a glass of dry wine sometimes at meals, but I was never much of a drinker

so I don't miss anything.

PJ

> >I tend to travel further a field where I won't

> >be able to bring all my food but I guess in a

> >few months I can always eat fish, chicken turkey

> >and veggies right and eat at restaurants after I

> >have told them I want nothing on anything right?

>

> Pretty much.... and yes, a certain amount of

> organization is required. I can't tell you how

> many times, especially in the first year or so,

> I'd say, " I think I want X for dinner.... oh,

> framijamit, I don't have any Y made.... "

>

> As to don't drink... depends on your definition

> of drinking. I like wine with a good meal. I

> love a good whiskey, neat. Pre-SCD, I loved a

> dark beer. (And I can now, on occasion, steal a

> few sips from my husband's mug with impunity.) I

> like silver rum. Don't much like bourbon. Really

> miss kahlua (which is rather weird, since I don't

> like coffee), which is why I was interested in

> the coconut-mocha ice cream, because I was

> wondering if I could ferment coconut-coffee and

> thicken it like coconut yogurt, and get a thick

> drink.... I'm thinking of throwing a shot of good

> Irish in my next batch of egg nogg ice cream to

> see if I can't keep it a little softer in the

> freezer, with smaller ice crystals, AND add a delicious flavor.

>

> My brain is generally running on ways to modify

> things to SCD. Because, quite literally, SCD

> saved my life. And I know it can make an

> astounding difference for thousands of people.

>

>

> — 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 have get togethers at my house all the time. My friends love my SCD foods that

I cook or when I bring them they always get eaten up first. Even to

Thanksgiving. My aunts are always wanting me to bring food now. You just have to

get your mind right. You will not be eating 5 foods for the rest of your life. I

know it's daunting at first, but when you start to get better and hopefully meds

free one day, you won't have any hard feelings about the diet at all.

A positive attitude will help a lot. Focus on whatever good things SCD is doing

for you. If you focus on the negative, you'll only cause yourself stress which

could make your symptoms worse. I hope you have supportive friends and family.

My sister and best friend are my most vehement SCD advocates. My sister will

actually fuss at someone for saying, " Oh, you can taste it. One bite won't

hurt. " Because she saw how bad off I was before SCD and how much better I was on

it. My BFF too.

I felt so much better on the diet, I didn't care about anything but eating the

foods that would make me feel better. I brought my own food to every event for a

long time. Saturday my mom had a family get together for my Granny's bday and I

couldn't eat one thing there. I brought my own food and was ok. When people that

didn't know I was sick asked, my mom always jumped in and said, she eats a

special diet to control her Crohn's disease or she will get really sick. Having

supportive people was key to the diet's success for me.

I don't know how many BMs you were having pre-SCD, but going from 2 to 3 doesn't

sound terrible. The issue could be with the roasted chicken or the prednisone

taper. I'd bank on the prednisone taper. Are you sure your chicken is pure

chicken with no fillers? I made that mistake at first on the diet. When I

switched to legal chicken, I did much better.

Misty Kimble

CD - no meds

SCD - Jan 2008

>

> So you are smart to do the diet now. I should have done it years ago

> but I love food and to have a good time and travel and party and cook and

somehow " would you like some tasteless chicken and carrot soup " didn't seem a

part of that.

> I guess I'm just getting depressed because I'm thinking I will be

> eating five things for the rest of my life. I roasted a chicken last

> night and stuff it with lemons and it had a bad affect. (3 bms in

> stead of two today) Can roasting a chicken with lemons really have a

> bad affect or is it that I'm tapering the prednisone?

[Guest guest]

But I need to get off the prednisone as it makes me feel worse than the disease. How do I get off it without flaring apart from sticking to the diet? I have get togethers at my house all the time. My friends love my SCD foods that I cook or when I bring them they always get eaten up first. Even to Thanksgiving. My aunts are always wanting me to bring food now. You just have to get your mind right. You will not be eating 5 foods for the rest of your life. I know it's daunting at first, but when you start to get better and hopefully meds free one day, you won't have any hard feelings about the diet at all. A positive attitude will help a lot. Focus on whatever good things SCD is doing for you. If you focus on the negative, you'll only cause yourself stress which could make your symptoms worse. I hope you have supportive friends and family. My sister and best friend are my most vehement SCD advocates. My sister will actually fuss at someone for saying, "Oh, you can taste it. One bite won't hurt." Because she saw how bad off I was before SCD and how much better I was on it. My BFF too. I felt so much better on the diet, I didn't care about anything but eating the foods that would make me feel better. I brought my own food to every event for a long time. Saturday my mom had a family get together for my Granny's bday and I couldn't eat one thing there. I brought my own food and was ok. When people that didn't know I was sick asked, my mom always jumped in and said, she eats a special diet to control her Crohn's disease or she will get really sick. Having supportive people was key to the diet's success for me. :)I don't know how many BMs you were having pre-SCD, but going from 2 to 3 doesn't sound terrible. The issue could be with the roasted chicken or the prednisone taper. I'd bank on the prednisone taper. Are you sure your chicken is pure chicken with no fillers? I made that mistake at first on the diet. When I switched to legal chicken, I did much better.Misty KimbleCD - no medsSCD - Jan 2008>> So you are smart to do the diet now. I should have done it years ago > but I love food and to have a good time and travel and party and cook and somehow "would you like some tasteless chicken and carrot soup" didn't seem a part of that. > I guess I'm just getting depressed because I'm thinking I will be > eating five things for the rest of my life. I roasted a chicken last > night and stuff it with lemons and it had a bad affect. (3 bms in > stead of two today) Can roasting a chicken with lemons really have a > bad affect or is it that I'm tapering the prednisone?

[Guest guest]

At 09:51 AM 8/17/2010, you wrote:

But I need to get off the

prednisone as it makes me feel worse than the disease. How do I get off

it without flaring apart from sticking to the diet?

Stick to the diet. And do a very slow wean from the prednisone.

Here is something I saved from my early days on the Long Island List

which may be helpful for those trying to wean off prednisone:

To those trying a slow prednisone wean,

Since Ben is 9, he sees a pediatric GI who follows an extremely

conservative prednisone weaning schedule that maybe some of you

" older " folks would be interested in. I think this

schedule is typical for kids but I don't know about adults. Of

course, check with your doctor first. It starts when you get down

to 20 mg.

two weeks - alternate 20mg/15mg every other day

two weeks - alternate 20 mg/10mg every other day

two weeks - alternate 20 mg/5mg every other day

two weeks - alternate 20 mg/0 mg every other day

two weeks - 15 mg every other day

two weeks - 10 mg every other day

two weeks - 5 mg every other day

two weeks - 2.5 mg every other day

Be well, Caryl

mom of Ben, Crohn's 1 year, SCD 3 weeks

—

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]

Every January, I travel up to Atlanta for a science fiction folk music convention.Marilyn, this actually made me laugh out loud. Who would have thought to combine science fiction and folk music?? Lol!! Cheers!Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Prednisone 10 mg 1x per day (trying to wean!!!!)

[Guest guest]

thank you.I'm doing 20mg one week15mg one week12.5 one week10mg one week9 mg one weekand we'll see how that goes. At 12.5 I feel semi normal! At 09:51 AM 8/17/2010, you wrote:But I need to get off the prednisone as it makes me feel worse than the disease. How do I get off it without flaring apart from sticking to the diet?Stick to the diet. And do a very slow wean from the prednisone.Here is something I saved from my early days on the Long Island List which may be helpful for those trying to wean off prednisone:To those trying a slow prednisone wean,Since Ben is 9, he sees a pediatric GI who follows an extremely conservative prednisone weaning schedule that maybe some of you "older" folks would be interested in. I think this schedule is typical for kids but I don't know about adults. Of course, check with your doctor first. It starts when you get down to 20 mg.two weeks - alternate 20mg/15mg every other daytwo weeks - alternate 20 mg/10mg every other daytwo weeks - alternate 20 mg/5mg every other daytwo weeks - alternate 20 mg/0 mg every other daytwo weeks - 15 mg every other daytwo weeks - 10 mg every other daytwo weeks - 5 mg every other daytwo weeks - 2.5 mg every other dayBe well, Carylmom of Ben, Crohn's 1 year, SCD 3 weeks— 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]

At first, all this does take a good deal of reading, time to learn the

way to prepare your new foods, questions, etc. But after awhile,

this settles down into a pretty good routine. You will be testing

new foods, of course, and some will work and some, darn!, will not, so

you try them again later. I am a lot like Marilyn here, IBS has

pretty much run my life for the better part of 30 years, and the stress

has ruined my adrenals and caused severe mitochondrial failure, which I'm

also working on, so I do not envision going back to a " normal "

diet. I'm just grateful that I have MORE foods now than I had when

I started a year ago. If I never get any more, so be it, but I have

a good deal of gut improvement already and more to come. What I

look forward to is eating out again someday, and maybe not having to

worry if the meat has been marinated in who knows what. And

travelling would be nice but I need more energy for that, can't blame the

gut, really. I think you'll find that as you start

feeling better and get more foods, you'll be a lot happier with the diet

and not worried about only eating five foods forever. You won't.

You'll get there. There are any number of very clever SCD cooks and a

bunch of them have published excellent cookbooks, yummy sounding stuff to

look forward to when your food list is more advanced. And of course,

eventually, Marilyn will be putting out the best cookbook yet, which we

all look forward to.

And, to look at it the other way, suppose you don't do the diet. Do

you want to stay sick? Even if you do feel a bit deprived for

awhile, it WILL get better and you will feel better and get more foods.

Sounds like win-win to me.

So you are smart to do the diet now. I should have done it years ago > but I love food and to have a good time and travel and party and

cook and somehow " would you like some tasteless chicken and carrot

soup " didn't seem a part of that. > I guess I'm just getting depressed because I'm thinking I will

be > eating five things for the rest of my life. I roasted a chicken

last > night and stuff it with lemons and it had a bad affect. (3 bms

in > stead of two today) Can roasting a chicken with lemons really

have a > bad affect or is it that I'm tapering the prednisone?

[Guest guest]

At 12:23 PM 8/17/2010, you wrote:

Marilyn, this actually made me

laugh out loud. Who would have thought to combine science fiction and

folk music?? Lol!!

Do a search on " filking " and you'll find more than you would

believe!

—

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