Re: Very sad = and update on the topic of meds

[Guest guest]

Thanks Marlyn, I hope this little spell passes quickly. I have been eating the

yogurt- trying to keep the good bacteria in there. I also ordered some legal

probiotics from GI pro health, as we plan to travel some and I wanted some back

up to the yogurt supply. I am thinking it is a good idea to start them now. Do

you have any advice on how to do this/ I ordered the SCDohphilus 10 tablets.

I am thinking the more " competition " I can have for the gut bugs, the better.

Thanks,

PJ

> >The third month has been a bit more emotional, a

> >little " looser " in the bathroom, albeit not

> >dramatic thankfully, but that great upward trend

> >seems to have hit a plateau. I had advanced to

> >stage 2/3 foods but now tend to stay with the

> >earlier stage foods for comfort. Any additional advice is welcome.

> >

> >I haven't had any cravings or desire to eat

> >illegals. To be honest, I would be afraid to. I

> >did dream about eating a sandwich- with bread!

> >LOL and woke up glad it was only a dream- more

> >like a nightmare!!! I'm not sleeping as well and

> >am a little moodier. Is it the " bugs " talking?

>

> It was the " third month " in your post which keyed

> me to what might be happening.

>

> What we sometimes call " the three month flare "

> is because (tah-dah!) it occurs around 3 months on SCD.

>

> As you're aware, the objective of SCD is to

> starve out the bad bacteria. Well, it has been

> observed that right around three months on the

> diet, you've done such a good job of starving

> them that their numbers are dropping rapidly.

> You've gotten rid of most of the weak sisters

> amongst the bad bacteria and the remaining ones are the stronger ones.

>

> So in effect, right now, you're saying, " Away

> with you! " and they're saying " H-ll no, we won't

> go! " and creating havoc for your poor gut. So it

> is absolutely critical that you hold fast at this

> point and not eat any illegals, because if you

> feed the bacteria right now, you'll let those

> stronger ones multiple, and then they'll be that much harder to starve out.

>

> The " three month flare " can occur anywhere from 9

> weeks to 16 weeks. It can also occur again at 6-7

> months, and 10-12 months. Those bacteria are

> stubborn. But YOU are more stubborn.

>

> My suggestion would be to what you've already

> done: drop back to easier-to-digest foods for a

> couple of days. Rest as much as possible, and

> don't push. Then gradually (probably not quite so

> gradually as the first time) reintroduce your regular foods.

>

> I seriously DID have the cravings. And the dreams. (Nightmares?)

>

>

> — Marilyn

> New Orleans, Louisiana, USA

> Undiagnosed IBS since 1976, SCD since 2001

> Darn Good SCD Cook

> No Human Children

> Shadow & Sunny Longhair Dachshund

>

[Guest guest]

What a success story! Did you stop the meds right away after starting SCD or did

you wait until you felt better for a while?

I'm not in a hurry, and I'm not ready. I'm just hoping I'll get there some day.

It is nice to feel there is a choice, and hope!

I also hope that SCD will become more mainstream!!

PJ

>

> As far as meds go, I was taking 16 pills/day of Pentasa (an

> anti-inflammatory) and was on/off (mostly on) prednisone for 3 years before

> I found the SCD. After my 2nd hospitalization, where I did not take Pentasa

> for 4 days, I noticed that I felt no better or worse for not taking it. So,

> I stopped taking it. When I found the SCD I was already weaning off

> prednisone and then finally stopped taking it. When I met with my so called

> Crohn's specialist for the last time (he dumped all of his HMO patients and

> I had to pay him $50.00 to see him), I introduced him to the SCD, gave him a

> copy of BTVC, told him I stopped taking the 16 pills of Pentasa a day and

> that I was weaning off prednisone. The look on his face was priceless - his

> jaw dropped to the floor in either disbelief or shock that I would do such a

> thing without his permission. All I can say is I never went back to him

> again. And I have been ok without the pharmaceutical drugs. However, that

> may not be the case for you. Only you can determine that by how you are

> feeling and what symptoms you are having.

>

> I empathize about the fear factor - before the SCD I was afraid to eat,

> knowing what was to occur, that is, my gut would go into spasms of pain and

> I would have bloody D. The fear factor faded as I improved right away on the

> SCD.

>

> As far as missing food that you used to eat, the 1st week I started the SCD

> I had dreams about eating food that had sugar, like cookies or cake. In the

> dreams I would be just about putting that now illegal food to my mouth when

> I would get the message " don't eat that " and then my hand would move away

> from my mouth. LOL the illegals never got to my mouth in my dreams.

>

> Know that you gut is healing and that it takes time and try to relax - yes,

> patience is the key. You're doing great!

>

> Carol

>

> CD 21 yrs

>

> SCD 4.5 yrs

>

> B12 shots & LDN

>

>

>

>

>

> From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf

> Of smdsmom2008

>

> , I hear you. Being recently diagnosed with " mild " UC, and feeling

> quite blessed to have found SCD so quickly, I still however feel overwhelmed

> at times by the emotional aspects. I also live in a small town and do not

> know anyone on SCD, or even anyone with bowel issues. The physicians in my

> area are good, competent, and do not offer anything outside the box. At this

> point I trust their advice while keeping an eye on the alternatives that

> people here are happy about. I would get little support in my area for being

> on SCD. So the " loneliness " is apparent. I also have a family- a great

> husband and kids thank goodness and although life goes on for them as usual,

> ( which I am grateful for ), it is an emotional shift for me.

>

> I credit G-d and SCD for the fact that life is more normal than not. However

> being only 3 months into it, there are some milder ups and downs, and

> getting over the fear factor in the bathroom is a biggie. Fortunately I see

> much improvement, and yet know I need much patience.

>

> I see people here on meds, and not on meds, and I agree with Marilyn's post

> that everyone finds their way. Regardless of the choice, I wonder how y'all

> ( yes I'm in the south ) get over the fear factor- or do things seem so

> normal that is gets less. It is a brave step to discard the meds, yet not

> right for everyone. (I still take mine). I felt very normal the second month

> on SCD. The third month has been a bit more emotional, a little " looser " in

> the bathroom, albeit not dramatic thankfully, but that great upward trend

> seems to have hit a plateau. I had advanced to stage 2/3 foods but now tend

> to stay with the earlier stage foods for comfort. Any additional advice is

> welcome.

>

> I haven't had any cravings or desire to eat illegals. To be honest, I would

> be afraid to. I did dream about eating a sandwich- with bread! LOL and woke

> up glad it was only a dream- more like a nightmare!!! I'm not sleeping as

> well and am a little moodier. Is it the " bugs " talking?

>

> I appreciate to support of this board, and the experience and insight of

> everyone here.

>

> PJ

>

[Guest guest]

What a success story! Did you stop the meds right away after starting SCD or did

you wait until you felt better for a while?

I'm not in a hurry, and I'm not ready. I'm just hoping I'll get there some day.

It is nice to feel there is a choice, and hope!

I also hope that SCD will become more mainstream!!

PJ

>

> As far as meds go, I was taking 16 pills/day of Pentasa (an

> anti-inflammatory) and was on/off (mostly on) prednisone for 3 years before

> I found the SCD. After my 2nd hospitalization, where I did not take Pentasa

> for 4 days, I noticed that I felt no better or worse for not taking it. So,

> I stopped taking it. When I found the SCD I was already weaning off

> prednisone and then finally stopped taking it. When I met with my so called

> Crohn's specialist for the last time (he dumped all of his HMO patients and

> I had to pay him $50.00 to see him), I introduced him to the SCD, gave him a

> copy of BTVC, told him I stopped taking the 16 pills of Pentasa a day and

> that I was weaning off prednisone. The look on his face was priceless - his

> jaw dropped to the floor in either disbelief or shock that I would do such a

> thing without his permission. All I can say is I never went back to him

> again. And I have been ok without the pharmaceutical drugs. However, that

> may not be the case for you. Only you can determine that by how you are

> feeling and what symptoms you are having.

>

> I empathize about the fear factor - before the SCD I was afraid to eat,

> knowing what was to occur, that is, my gut would go into spasms of pain and

> I would have bloody D. The fear factor faded as I improved right away on the

> SCD.

>

> As far as missing food that you used to eat, the 1st week I started the SCD

> I had dreams about eating food that had sugar, like cookies or cake. In the

> dreams I would be just about putting that now illegal food to my mouth when

> I would get the message " don't eat that " and then my hand would move away

> from my mouth. LOL the illegals never got to my mouth in my dreams.

>

> Know that you gut is healing and that it takes time and try to relax - yes,

> patience is the key. You're doing great!

>

> Carol

>

> CD 21 yrs

>

> SCD 4.5 yrs

>

> B12 shots & LDN

>

>

>

>

>

> From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf

> Of smdsmom2008

>

> , I hear you. Being recently diagnosed with " mild " UC, and feeling

> quite blessed to have found SCD so quickly, I still however feel overwhelmed

> at times by the emotional aspects. I also live in a small town and do not

> know anyone on SCD, or even anyone with bowel issues. The physicians in my

> area are good, competent, and do not offer anything outside the box. At this

> point I trust their advice while keeping an eye on the alternatives that

> people here are happy about. I would get little support in my area for being

> on SCD. So the " loneliness " is apparent. I also have a family- a great

> husband and kids thank goodness and although life goes on for them as usual,

> ( which I am grateful for ), it is an emotional shift for me.

>

> I credit G-d and SCD for the fact that life is more normal than not. However

> being only 3 months into it, there are some milder ups and downs, and

> getting over the fear factor in the bathroom is a biggie. Fortunately I see

> much improvement, and yet know I need much patience.

>

> I see people here on meds, and not on meds, and I agree with Marilyn's post

> that everyone finds their way. Regardless of the choice, I wonder how y'all

> ( yes I'm in the south ) get over the fear factor- or do things seem so

> normal that is gets less. It is a brave step to discard the meds, yet not

> right for everyone. (I still take mine). I felt very normal the second month

> on SCD. The third month has been a bit more emotional, a little " looser " in

> the bathroom, albeit not dramatic thankfully, but that great upward trend

> seems to have hit a plateau. I had advanced to stage 2/3 foods but now tend

> to stay with the earlier stage foods for comfort. Any additional advice is

> welcome.

>

> I haven't had any cravings or desire to eat illegals. To be honest, I would

> be afraid to. I did dream about eating a sandwich- with bread! LOL and woke

> up glad it was only a dream- more like a nightmare!!! I'm not sleeping as

> well and am a little moodier. Is it the " bugs " talking?

>

> I appreciate to support of this board, and the experience and insight of

> everyone here.

>

> PJ

>

[Guest guest]

Hi PJ -

I have also been diagnosed with " mild " UC and have had wonderful success

with SCD. My primary medication has been sulfasalazine, which worked

great for the first year. After that, even increasing the dosage didn't

stop my soft stools. That's when I found SCD and it caused a noticeable

change in my stools within the first week. Learning about the diet took

quite a bit of time, and I made lots of mistakes along the way, but it

was the first time I could recognize my body responding to what I ate,

so it was pretty easy to figure out the cause and effect.

I gradually reduced my meds, with my doctor's knowledge. He was pretty

supportive of the diet ( " If it's working for you, great. " ) By the end of

my first year on SCD, I was 100% med free and symptom free. Then this

March I had surgery and the IV antibiotics wiped out my carefully

cultivated bacterial balance. I started bleeding and the sulfasalazine

didn't do a thing. I finally had to use Canasa suppositories, which

solved the problem within days. So I think there are definitely times

when we need meds. I'm still taking the sulfa, but gradually tapering

it.

I had not experienced the " fear factor " you mentioned until this episode

of bleeding. It was the first time I had seen blood since being

diagnosed, and I was really afraid that the disease would get its

tentacles into my intestine and just spread. I was afraid the diet

wasn't working anymore. I was afraid of a lot of things. But once the

Canasa stopped the bleeding, I've been feeling as good as I felt before.

I'm still eating less advanced foods to give whatever small ulceration

there was time to heal. Patience, as always, is mandatory.

The diet is a Godsend, and so is this group. Welcome and best wishes on

your journey!

Kathy

UC since 12/05

SCD since 7/07

med-free 7/08 to 3/09

sulfasalazine 2000mg/daily, tapering

> From: BTVC-SCD [mailto:BTVC-SCD ] On

Behalf

> Of smdsmom2008

> I see people here on meds, and not on meds, and I agree with Marilyn's

post

> that everyone finds their way. Regardless of the choice, I wonder how

y'all

> ( yes I'm in the south ) get over the fear factor- or do things seem

so

> normal that is gets less.

[Guest guest]

Marilyn and Kathy,

Thanks for the encouragement. I think the fear factor for me also comes from the

fact that the meds I was given at the time made me sick. Sulfasalazine ( which I

am taking ) was tolerable. The enterocort- which was supposed to not get

absorbed- well I did absorb it and it took a while for my doctors to recognize

that I was reacting to the steroid in it and developed electrolyte imbalance.

Once we got that, I was able to manage better and they were able to help more.

My doctor is very traditional and said diet did not matter- but everything I

read on my own pointed to diet- and after reading a lot decided on SCD. I was

also scared with this new issue and had no access to group support in my small

town, so the support from this group means a lot.

My stools also improved on SCD. I can only report improvement so far, except for

this 3 month irregularity. Hearing these stories gives me great hope that I will

be much improved. I feel very grateful to have found SCD so quickly and the

support of this group.

Why do I wish it was mainstream? A lot of reasons. It would be fun to have an

SCD potluck dinner, cooking club, share food, instead of doing this by myself

for one!

Thanks,

PJ

[Guest guest]

Maybe Alyssa- that kid will be you!!

PJ

-- In BTVC-SCD , Alyssa Luck wrote:

>

> >> I also hope that SCD will become more mainstream!!

> >

> > On the one hand, I do hope it becomes more accepted. On the other

> > hand, I worry, because the moment it becomes more accepted, people

> > will start trying to change it, and then it will stop working, and

> > the " researchers " will say, " See? Diet has nothing to do with gut

> > problems... "

>

>

> I just wish they would do a news story on some kid with IBD's

> 'miraculous recovery' with SCD or something. THe word needs to get

> out!!! I can't think of how though. Maybe they could make one of our

> life stories into a movie...

>

> Pour Dieu, pour terre,

> Alyssa 15

> UC 1 year-ish

> SCD 2 weeks-ish (restarted)

> No meds!!!

>

[Guest guest]

Maybe Alyssa- that kid will be you!!

PJ

-- In BTVC-SCD , Alyssa Luck wrote:

>

> >> I also hope that SCD will become more mainstream!!

> >

> > On the one hand, I do hope it becomes more accepted. On the other

> > hand, I worry, because the moment it becomes more accepted, people

> > will start trying to change it, and then it will stop working, and

> > the " researchers " will say, " See? Diet has nothing to do with gut

> > problems... "

>

>

> I just wish they would do a news story on some kid with IBD's

> 'miraculous recovery' with SCD or something. THe word needs to get

> out!!! I can't think of how though. Maybe they could make one of our

> life stories into a movie...

>

> Pour Dieu, pour terre,

> Alyssa 15

> UC 1 year-ish

> SCD 2 weeks-ish (restarted)

> No meds!!!

>

[Guest guest]

I have a sister who's son has chron's and I wish she would read this, I had suggested the Maker's Diet and she didn't read that either, but this diet seems easier to follow than the maker's diet.FrancieMother of 4 beautiful childrenTeacher

>

> >> I also hope that SCD will become more mainstream!!

> >

> > On the one hand, I do hope it becomes more accepted. On the other

> > hand, I worry, because the moment it becomes more accepted, people

> > will start trying to change it, and then it will stop working, and

> > the "researchers" will say, "See? Diet has nothing to do with gut

> > problems..."

>

>

> I just wish they would do a news story on some kid with IBD's

> 'miraculous recovery' with SCD or something. THe word needs to get

> out!!! I can't think of how though. Maybe they could make one of our

> life stories into a movie...

>

> Pour Dieu, pour terre,

> Alyssa 15

> UC 1 year-ish

> SCD 2 weeks-ish (restarted)

> No meds!!!

>

[Guest guest]

Hi PJ,

Wow – the meds thing. You know, that was all

that seemed to help after a while and even it wasn’t doing much

good. I was taking 3600 mg per day of Asacol and 25 mg per day of

Amitryptaline (sp?). I’d have a couple of days that were better

than the others but all in all it wasn’t a very enjoyable existence as I

mentioned earlier.

I was blessed to have nearly immediate positive results once

I went on the diet and it soon became apparent to me that our way of eating (I

prefer that phrase to “diet”!) was the single best thing I had done

for my health. It got so good that I thought I’d see if I could do

without the meds. I started the SCD on June 19, 2007, by August I was off

the Asacol and in January of 2008 I went off the Ami. And have had no

meds since. I don’t necessarily think the no meds route is for

everyone and I wouldn’t replace your doctor’s direction with my

experience and opinion however I know for me, in my case, the SCD did more than

all the doctors and all the tests and all the hospitalizations did. So I’ll

stick with it.

Certainly I have had flares and bad days – but they’re

the rare exception rather than the rule. My worst moments “now”

are equal to some of my better moments “then”.

So anyway, the “No Meds” thing in my signature

is really just my way of offering hope to my fellows. We need that, I

need that. If a guy like me in the shape I was in can get the results and

healing I have from doing the SCD, I think there’s hope for anyone.

Y’all stick with it. See I’m from the

South too. Well, does Southern California count? J

S. SCD 6/19/07, IBD 1988, NO MEDS!

[Guest guest]

Hi PJ,

Wow – the meds thing. You know, that was all

that seemed to help after a while and even it wasn’t doing much

good. I was taking 3600 mg per day of Asacol and 25 mg per day of

Amitryptaline (sp?). I’d have a couple of days that were better

than the others but all in all it wasn’t a very enjoyable existence as I

mentioned earlier.

I was blessed to have nearly immediate positive results once

I went on the diet and it soon became apparent to me that our way of eating (I

prefer that phrase to “diet”!) was the single best thing I had done

for my health. It got so good that I thought I’d see if I could do

without the meds. I started the SCD on June 19, 2007, by August I was off

the Asacol and in January of 2008 I went off the Ami. And have had no

meds since. I don’t necessarily think the no meds route is for

everyone and I wouldn’t replace your doctor’s direction with my

experience and opinion however I know for me, in my case, the SCD did more than

all the doctors and all the tests and all the hospitalizations did. So I’ll

stick with it.

Certainly I have had flares and bad days – but they’re

the rare exception rather than the rule. My worst moments “now”

are equal to some of my better moments “then”.

So anyway, the “No Meds” thing in my signature

is really just my way of offering hope to my fellows. We need that, I

need that. If a guy like me in the shape I was in can get the results and

healing I have from doing the SCD, I think there’s hope for anyone.

Y’all stick with it. See I’m from the

South too. Well, does Southern California count? J

S. SCD 6/19/07, IBD 1988, NO MEDS!

[Guest guest]

I STILL have dreams of eating sugary foods like cakes and cookies. However,

since I usually am aware it's just a dream, I chow down and enjoy :-).

Holly

Crohn's

SCD 12/01/08

> As far as missing food that you used to eat, the 1st week I started the SCD

> I had dreams about eating food that had sugar, like cookies or cake. In the

> dreams I would be just about putting that now illegal food to my mouth when

> I would get the message " don't eat that " and then my hand would move away

> from my mouth. LOL the illegals never got to my mouth in my dreams.

>

> Carol

>

> CD 21 yrs

>

> SCD 4.5 yrs

>

> B12 shots & LDN

[Guest guest]

I STILL have dreams of eating sugary foods like cakes and cookies. However,

since I usually am aware it's just a dream, I chow down and enjoy :-).

Holly

Crohn's

SCD 12/01/08

> As far as missing food that you used to eat, the 1st week I started the SCD

> I had dreams about eating food that had sugar, like cookies or cake. In the

> dreams I would be just about putting that now illegal food to my mouth when

> I would get the message " don't eat that " and then my hand would move away

> from my mouth. LOL the illegals never got to my mouth in my dreams.

>

> Carol

>

> CD 21 yrs

>

> SCD 4.5 yrs

>

> B12 shots & LDN

[Guest guest]

That is a hoot!

Carol

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of spookyhurst

I STILL have dreams of eating sugary foods like

cakes and cookies. However, since I usually am aware it's just a dream, I chow

down and enjoy :-).

Holly

Crohn's

SCD 12/01/08

> As far as missing food that you used to eat, the 1st week I started the

SCD

> I had dreams about eating food that had sugar, like cookies or cake. In

the

> dreams I would be just about putting that now illegal food to my mouth

when

> I would get the message " don't eat that " and then my hand would

move away

> from my mouth. LOL the illegals never got to my mouth in my dreams.

>

> Carol

>

> CD 21 yrs

>

> SCD 4.5 yrs

>

> B12 shots & LDN

[Guest guest]

That is a hoot!

Carol

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of spookyhurst

I STILL have dreams of eating sugary foods like

cakes and cookies. However, since I usually am aware it's just a dream, I chow

down and enjoy :-).

Holly

Crohn's

SCD 12/01/08

> As far as missing food that you used to eat, the 1st week I started the

SCD

> I had dreams about eating food that had sugar, like cookies or cake. In

the

> dreams I would be just about putting that now illegal food to my mouth

when

> I would get the message " don't eat that " and then my hand would

move away

> from my mouth. LOL the illegals never got to my mouth in my dreams.

>

> Carol

>

> CD 21 yrs

>

> SCD 4.5 yrs

>

> B12 shots & LDN

[Guest guest]

Carol and Holly,

I used to have wacky wacky dreams of hoarding illegal foods- mind you stuff I

never even ate when I could.. like brownies from a box or mock maple syrup and I

would just stuff myself silly waking up in a panic in a state of utter disbelief

thinking it was %100 real.

Alcoholics and drug addicts have these kind of dreams too.

Crazy!

Jodi

[Guest guest]

Sugar addiction is powerful.

Carol

From: BTVC-SCD

[mailto:BTVC-SCD ] On Behalf Of jodah235

Carol and Holly,

I used to have wacky wacky dreams of hoarding illegal foods- mind you stuff I

never even ate when I could.. like brownies from a box or mock maple syrup and

I would just stuff myself silly waking up in a panic in a state of utter

disbelief thinking it was %100 real.

Alcoholics and drug addicts have these kind of dreams too.

Crazy!

Jodi

[Guest guest]

Sugar addiction is powerful.

Carol

From: BTVC-SCD

[mailto:BTVC-SCD ] On Behalf Of jodah235

Carol and Holly,

I used to have wacky wacky dreams of hoarding illegal foods- mind you stuff I

never even ate when I could.. like brownies from a box or mock maple syrup and

I would just stuff myself silly waking up in a panic in a state of utter

disbelief thinking it was %100 real.

Alcoholics and drug addicts have these kind of dreams too.

Crazy!

Jodi

[Guest guest]

Carol.

excuse my typing i am holding the baby.

question, what filler do you have your ldn compounded with?

today we got our daughters GI to prescribe 3 mg caps YEAH!!!!

she has crohns and is on Pentasa, which will be stopped after she gets on the

LDN. Do you prefer a specific compounding pharmacy?

daughter CD

SCD since 5/1/09

peace,

elizabeth

>

> As far as meds go, I was taking 16 pills/day of Pentasa (an

> anti-inflammatory) and was on/off (mostly on) prednisone for 3 years before

> I found the SCD. After my 2nd hospitalization, where I did not take Pentasa

> for 4 days, I noticed that I felt no better or worse for not taking it. So,

> I stopped taking it. When I found the SCD I was already weaning off

> prednisone and then finally stopped taking it. When I met with my so called

> Crohn's specialist for the last time (he dumped all of his HMO patients and

> I had to pay him $50.00 to see him), I introduced him to the SCD, gave him a

> copy of BTVC, told him I stopped taking the 16 pills of Pentasa a day and

> that I was weaning off prednisone. The look on his face was priceless - his

> jaw dropped to the floor in either disbelief or shock that I would do such a

> thing without his permission. All I can say is I never went back to him

> again. And I have been ok without the pharmaceutical drugs. However, that

> may not be the case for you. Only you can determine that by how you are

> feeling and what symptoms you are having.

>

> I empathize about the fear factor - before the SCD I was afraid to eat,

> knowing what was to occur, that is, my gut would go into spasms of pain and

> I would have bloody D. The fear factor faded as I improved right away on the

> SCD.

>

> As far as missing food that you used to eat, the 1st week I started the SCD

> I had dreams about eating food that had sugar, like cookies or cake. In the

> dreams I would be just about putting that now illegal food to my mouth when

> I would get the message " don't eat that " and then my hand would move away

> from my mouth. LOL the illegals never got to my mouth in my dreams.

>

> Know that you gut is healing and that it takes time and try to relax - yes,

> patience is the key. You're doing great!

>

> Carol

>

> CD 21 yrs

>

> SCD 4.5 yrs

>

> B12 shots & LDN

>

>

>

>

>

> From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf

> Of smdsmom2008

>

> , I hear you. Being recently diagnosed with " mild " UC, and feeling

> quite blessed to have found SCD so quickly, I still however feel overwhelmed

> at times by the emotional aspects. I also live in a small town and do not

> know anyone on SCD, or even anyone with bowel issues. The physicians in my

> area are good, competent, and do not offer anything outside the box. At this

> point I trust their advice while keeping an eye on the alternatives that

> people here are happy about. I would get little support in my area for being

> on SCD. So the " loneliness " is apparent. I also have a family- a great

> husband and kids thank goodness and although life goes on for them as usual,

> ( which I am grateful for ), it is an emotional shift for me.

>

> I credit G-d and SCD for the fact that life is more normal than not. However

> being only 3 months into it, there are some milder ups and downs, and

> getting over the fear factor in the bathroom is a biggie. Fortunately I see

> much improvement, and yet know I need much patience.

>

> I see people here on meds, and not on meds, and I agree with Marilyn's post

> that everyone finds their way. Regardless of the choice, I wonder how y'all

> ( yes I'm in the south ) get over the fear factor- or do things seem so

> normal that is gets less. It is a brave step to discard the meds, yet not

> right for everyone. (I still take mine). I felt very normal the second month

> on SCD. The third month has been a bit more emotional, a little " looser " in

> the bathroom, albeit not dramatic thankfully, but that great upward trend

> seems to have hit a plateau. I had advanced to stage 2/3 foods but now tend

> to stay with the earlier stage foods for comfort. Any additional advice is

> welcome.

>

> I haven't had any cravings or desire to eat illegals. To be honest, I would

> be afraid to. I did dream about eating a sandwich- with bread! LOL and woke

> up glad it was only a dream- more like a nightmare!!! I'm not sleeping as

> well and am a little moodier. Is it the " bugs " talking?

>

> I appreciate to support of this board, and the experience and insight of

> everyone here.

>

> PJ

>

[Guest guest]

Carol.

excuse my typing i am holding the baby.

question, what filler do you have your ldn compounded with?

today we got our daughters GI to prescribe 3 mg caps YEAH!!!!

she has crohns and is on Pentasa, which will be stopped after she gets on the

LDN. Do you prefer a specific compounding pharmacy?

daughter CD

SCD since 5/1/09

peace,

elizabeth

>

> As far as meds go, I was taking 16 pills/day of Pentasa (an

> anti-inflammatory) and was on/off (mostly on) prednisone for 3 years before

> I found the SCD. After my 2nd hospitalization, where I did not take Pentasa

> for 4 days, I noticed that I felt no better or worse for not taking it. So,

> I stopped taking it. When I found the SCD I was already weaning off

> prednisone and then finally stopped taking it. When I met with my so called

> Crohn's specialist for the last time (he dumped all of his HMO patients and

> I had to pay him $50.00 to see him), I introduced him to the SCD, gave him a

> copy of BTVC, told him I stopped taking the 16 pills of Pentasa a day and

> that I was weaning off prednisone. The look on his face was priceless - his

> jaw dropped to the floor in either disbelief or shock that I would do such a

> thing without his permission. All I can say is I never went back to him

> again. And I have been ok without the pharmaceutical drugs. However, that

> may not be the case for you. Only you can determine that by how you are

> feeling and what symptoms you are having.

>

> I empathize about the fear factor - before the SCD I was afraid to eat,

> knowing what was to occur, that is, my gut would go into spasms of pain and

> I would have bloody D. The fear factor faded as I improved right away on the

> SCD.

>

> As far as missing food that you used to eat, the 1st week I started the SCD

> I had dreams about eating food that had sugar, like cookies or cake. In the

> dreams I would be just about putting that now illegal food to my mouth when

> I would get the message " don't eat that " and then my hand would move away

> from my mouth. LOL the illegals never got to my mouth in my dreams.

>

> Know that you gut is healing and that it takes time and try to relax - yes,

> patience is the key. You're doing great!

>

> Carol

>

> CD 21 yrs

>

> SCD 4.5 yrs

>

> B12 shots & LDN

>

>

>

>

>

> From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf

> Of smdsmom2008

>

> , I hear you. Being recently diagnosed with " mild " UC, and feeling

> quite blessed to have found SCD so quickly, I still however feel overwhelmed

> at times by the emotional aspects. I also live in a small town and do not

> know anyone on SCD, or even anyone with bowel issues. The physicians in my

> area are good, competent, and do not offer anything outside the box. At this

> point I trust their advice while keeping an eye on the alternatives that

> people here are happy about. I would get little support in my area for being

> on SCD. So the " loneliness " is apparent. I also have a family- a great

> husband and kids thank goodness and although life goes on for them as usual,

> ( which I am grateful for ), it is an emotional shift for me.

>

> I credit G-d and SCD for the fact that life is more normal than not. However

> being only 3 months into it, there are some milder ups and downs, and

> getting over the fear factor in the bathroom is a biggie. Fortunately I see

> much improvement, and yet know I need much patience.

>

> I see people here on meds, and not on meds, and I agree with Marilyn's post

> that everyone finds their way. Regardless of the choice, I wonder how y'all

> ( yes I'm in the south ) get over the fear factor- or do things seem so

> normal that is gets less. It is a brave step to discard the meds, yet not

> right for everyone. (I still take mine). I felt very normal the second month

> on SCD. The third month has been a bit more emotional, a little " looser " in

> the bathroom, albeit not dramatic thankfully, but that great upward trend

> seems to have hit a plateau. I had advanced to stage 2/3 foods but now tend

> to stay with the earlier stage foods for comfort. Any additional advice is

> welcome.

>

> I haven't had any cravings or desire to eat illegals. To be honest, I would

> be afraid to. I did dream about eating a sandwich- with bread! LOL and woke

> up glad it was only a dream- more like a nightmare!!! I'm not sleeping as

> well and am a little moodier. Is it the " bugs " talking?

>

> I appreciate to support of this board, and the experience and insight of

> everyone here.

>

> PJ

>

[Guest guest]

Thanks this helps me judge my progress. I know that going off meds is a very

personal decision and....everyone is different. I have read so many success

stories on SCD. Thankfully I'm making progress too, and hope to add my success

story to them!!

PJ

>

> Hi PJ,

>

>

>

> Wow - the meds thing. You know, that was all that seemed to help after a

> while and even it wasn't doing much good. I was taking 3600 mg per day of

> Asacol and 25 mg per day of Amitryptaline (sp?). I'd have a couple of days

> that were better than the others but all in all it wasn't a very enjoyable

> existence as I mentioned earlier.

>

>

>

> I was blessed to have nearly immediate positive results once I went on the

> diet and it soon became apparent to me that our way of eating (I prefer that

> phrase to " diet " !) was the single best thing I had done for my health. It

> got so good that I thought I'd see if I could do without the meds. I

> started the SCD on June 19, 2007, by August I was off the Asacol and in

> January of 2008 I went off the Ami. And have had no meds since. I don't

> necessarily think the no meds route is for everyone and I wouldn't replace

> your doctor's direction with my experience and opinion however I know for

> me, in my case, the SCD did more than all the doctors and all the tests and

> all the hospitalizations did. So I'll stick with it.

>

>

>

> Certainly I have had flares and bad days - but they're the rare exception

> rather than the rule. My worst moments " now " are equal to some of my better

> moments " then " .

>

>

>

> So anyway, the " No Meds " thing in my signature is really just my way of

> offering hope to my fellows. We need that, I need that. If a guy like me

> in the shape I was in can get the results and healing I have from doing the

> SCD, I think there's hope for anyone.

>

>

>

> Y'all stick with it. See I'm from the South too. Well, does Southern

> California count? :-)

>

>

>

> S. SCD 6/19/07, IBD 1988, NO MEDS!

>

[Guest guest]

Thanks this helps me judge my progress. I know that going off meds is a very

personal decision and....everyone is different. I have read so many success

stories on SCD. Thankfully I'm making progress too, and hope to add my success

story to them!!

PJ

>

> Hi PJ,

>

>

>

> Wow - the meds thing. You know, that was all that seemed to help after a

> while and even it wasn't doing much good. I was taking 3600 mg per day of

> Asacol and 25 mg per day of Amitryptaline (sp?). I'd have a couple of days

> that were better than the others but all in all it wasn't a very enjoyable

> existence as I mentioned earlier.

>

>

>

> I was blessed to have nearly immediate positive results once I went on the

> diet and it soon became apparent to me that our way of eating (I prefer that

> phrase to " diet " !) was the single best thing I had done for my health. It

> got so good that I thought I'd see if I could do without the meds. I

> started the SCD on June 19, 2007, by August I was off the Asacol and in

> January of 2008 I went off the Ami. And have had no meds since. I don't

> necessarily think the no meds route is for everyone and I wouldn't replace

> your doctor's direction with my experience and opinion however I know for

> me, in my case, the SCD did more than all the doctors and all the tests and

> all the hospitalizations did. So I'll stick with it.

>

>

>

> Certainly I have had flares and bad days - but they're the rare exception

> rather than the rule. My worst moments " now " are equal to some of my better

> moments " then " .

>

>

>

> So anyway, the " No Meds " thing in my signature is really just my way of

> offering hope to my fellows. We need that, I need that. If a guy like me

> in the shape I was in can get the results and healing I have from doing the

> SCD, I think there's hope for anyone.

>

>

>

> Y'all stick with it. See I'm from the South too. Well, does Southern

> California count? :-)

>

>

>

> S. SCD 6/19/07, IBD 1988, NO MEDS!

>

[Guest guest]

Hi ,

How old is your daughter with Crohn’s? From what I have

read it is recommended by Dr. Jaquelyn McCandless to use LDN in cream form for

children with active Crohn’s Disease. Here is a link about LDN &

Crohn’s:

http://www.webspawner.com/users/ldnforcrohns/index.html

I myself am using the cream, made with emu oil per the recipe by

Dr. McCandless. I get it from www.CoastalCompounding.com

It comes in pre-filled syringes that you measure out onto the inner wrist. It

cost me about 75.00 for a three month supply. Coastal Compounding says they

will send the recipe to any compounding pharmacy that requests it. It must be

compounded with emu oil. I will send you an email from Dr. McCandless from the

LDN Yahoo Health Group.

I would recommend that you join that LDN group and post your questions

there about LDN. I have no experience to recommend a filler. As far as I know

there are several choices for filler. Here is the address for the LDN group:

http://health.groups.yahoo.com/group/lowdosenaltrexone/

And you might ask on www.PecanBread.com

It is a site for children who are on the SCD. Those folks would be your best

bet for advice, in my opinion.

That is wonderful that you got a prescription!

Carol

CD 21 yrs

SCD 4.5 yrs

B12 shots & LDN

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of littleonesmybabes

Carol.

excuse my typing i am holding the baby.

question, what filler do you have your ldn compounded with?

today we got our daughters GI to prescribe 3 mg caps YEAH!!!!

she has crohns and is on Pentasa, which will be stopped after she gets on the

LDN. Do you prefer a specific compounding pharmacy?

daughter CD

SCD since 5/1/09

peace,

elizabeth

>

> As far as meds go, I was taking 16 pills/day of Pentasa (an

> anti-inflammatory) and was on/off (mostly on) prednisone for 3 years

before

> I found the SCD. After my 2nd hospitalization, where I did not take Pentasa

> for 4 days, I noticed that I felt no better or worse for not taking it.

So,

> I stopped taking it. When I found the SCD I was already weaning off

> prednisone and then finally stopped taking it. When I met with my so

called

> Crohn's specialist for the last time (he dumped all of his HMO patients

and

> I had to pay him $50.00 to see him), I introduced him to the SCD, gave him

a

> copy of BTVC, told him I stopped taking the 16 pills of Pentasa a day and

> that I was weaning off prednisone. The look on his face was priceless -

his

> jaw dropped to the floor in either disbelief or shock that I would do such

a

> thing without his permission. All I can say is I never went back to him

> again. And I have been ok without the pharmaceutical drugs. However, that

> may not be the case for you. Only you can determine that by how you are

> feeling and what symptoms you are having.

>

[Guest guest]

Hi ,

How old is your daughter with Crohn’s? From what I have

read it is recommended by Dr. Jaquelyn McCandless to use LDN in cream form for

children with active Crohn’s Disease. Here is a link about LDN &

Crohn’s:

http://www.webspawner.com/users/ldnforcrohns/index.html

I myself am using the cream, made with emu oil per the recipe by

Dr. McCandless. I get it from www.CoastalCompounding.com

It comes in pre-filled syringes that you measure out onto the inner wrist. It

cost me about 75.00 for a three month supply. Coastal Compounding says they

will send the recipe to any compounding pharmacy that requests it. It must be

compounded with emu oil. I will send you an email from Dr. McCandless from the

LDN Yahoo Health Group.

I would recommend that you join that LDN group and post your questions

there about LDN. I have no experience to recommend a filler. As far as I know

there are several choices for filler. Here is the address for the LDN group:

http://health.groups.yahoo.com/group/lowdosenaltrexone/

And you might ask on www.PecanBread.com

It is a site for children who are on the SCD. Those folks would be your best

bet for advice, in my opinion.

That is wonderful that you got a prescription!

Carol

CD 21 yrs

SCD 4.5 yrs

B12 shots & LDN

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of littleonesmybabes

Carol.

excuse my typing i am holding the baby.

question, what filler do you have your ldn compounded with?

today we got our daughters GI to prescribe 3 mg caps YEAH!!!!

she has crohns and is on Pentasa, which will be stopped after she gets on the

LDN. Do you prefer a specific compounding pharmacy?

daughter CD

SCD since 5/1/09

peace,

elizabeth

>

> As far as meds go, I was taking 16 pills/day of Pentasa (an

> anti-inflammatory) and was on/off (mostly on) prednisone for 3 years

before

> I found the SCD. After my 2nd hospitalization, where I did not take Pentasa

> for 4 days, I noticed that I felt no better or worse for not taking it.

So,

> I stopped taking it. When I found the SCD I was already weaning off

> prednisone and then finally stopped taking it. When I met with my so

called

> Crohn's specialist for the last time (he dumped all of his HMO patients

and

> I had to pay him $50.00 to see him), I introduced him to the SCD, gave him

a

> copy of BTVC, told him I stopped taking the 16 pills of Pentasa a day and

> that I was weaning off prednisone. The look on his face was priceless -

his

> jaw dropped to the floor in either disbelief or shock that I would do such

a

> thing without his permission. All I can say is I never went back to him

> again. And I have been ok without the pharmaceutical drugs. However, that

> may not be the case for you. Only you can determine that by how you are

> feeling and what symptoms you are having.

>