Re: Re: discouraged intro results

[Guest guest]

We both just read Prassad’s book

which was a huge help to me personally in understanding what my son is dealing

with emotionally through this. There were so many things in the author’s

life that parallels my DS, and I think it was helpful to him as well in terms

of putting into words what he is experiencing.

That being said, the meds that he was on in

the past (from Oct. ’09 – May ’10) were two rounds of

Prednisone, Omeprazole (20 mg), Asacol (800 mg. 3xs daily) and then Imuran (125

mg). With all of that, he received no benefit. His stools never firmed up. He

has never had the severe bleeding and horrible pain that Prassad and others

have talked about. The only “benefit” he saw was a spike in his

weight which was initially a thrill for us all. Of course that changed after

tapering off and now he is struggling to hang onto his 123 lbs. His lowest

point was 109 lbs. in early Oct. He is adamant about not taking any meds at all

and is amazingly determined to make this diet work for himself. I am in awe at

his discipline but also don’t want him to be stubborn if the meds would

actually assist…that just doesn’t seem to be the case.

What always had me stumped was that one of

the side effects to both Asacol and Imuran is diarrhea… can anyone please

help me to understand WHY drugs that can cause diarrhea are prescribed when

diarrhea is a major issue??

So, based on the above, is it really

worthwhile to do any meds?

Can anyone share a personal story about

how long it took before symptoms of healing started to be seen? And what were

some of the initial signs of healing? Maybe he is starting to heal but we aren’t

looking for the right signs. I know everyone is different but I was wondering

if anyone here has had a similar experience and how they have progressed.

I am so thankful for the pioneers who have

already traveled this path and can offer guidance along the way!

Eileen

Mother of 19 yo son with UC

UC 5 diagnosed at age 4; remission until age 14

SCD almost 3 months

no meds

Eileen Cawood

email: parvus@...

From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of smdsmom2008

Sent: Friday, August 13, 2010 9:58

AM

To: BTVC-SCD

Subject: Re:

discouraged intro results

Hi,

I noticed he is not on any meds. Are you opposed to all medication? The reason

I asked is because many of us use medication and SCD. If you look at some of

the stories of people (like Raman Prassad) who are not on meds, you will see

that they started SCD on medication and later, when they had no symptoms- chose

to stop ( some against doctor's advice)their meds on their own.

Since he has symptoms, you may want to consider staying on SCD and adding a

medication too.

This is just my thought because I don't think Elaine ever suggested diet as a

replacement for medication although for some people this seems to have been the

course. The diet is supposed to help, but people have used all avenues to feel

better.

PJ

>

> OK...today is day 4 of a second round with the intro diet. THe first time

was only for 2 days and we were new to this and moved too quickly into all

legals. After no improvement, he wanted to do the intro again. He thinks he

should stay on the intro but I thought you should only do it for 5 days max?

>

> Shouldn't there be some small sign of improvement? Below is what he has

existed on all week long.

>

> Breakfast: 2 scrambled eggs with DCCC added last two days,diluted apple

cider or grape juice;cheese cake; one morning some chicken from the soup

> Lunch: beef patty (salt,pepper, garlic powder;added a small amount of

legal mustard and oregano yesterday)chicken soup, cheese cake,apple cider

> Dinner: beef patty, chicken soup, cheese cake; last night had broiled

salmon

> Drinks: he has diluted his apple cider and grape juice with either club

soda or Pellagrino water

>

> Evening snack (at least 1 1/2 hour before bed): some diluted apple cider

and cheesecake

>

> Supplements:

> He had been taking Freeda's SCD Multivitamin (1 only at this point)but

hasn't taken any for the past two days.

> Probiotic: No yogurt; every time he has tried this stools get worse

> He tried SCDolphilus at 1/2 capsule for a week but same thing and stopped.

> S. Boulardi:had been taking one but bumped up to two for the past two days

based on list recommendation.

>

> Bottom line results: Frequeny has increased to sometimes 6 per day;stools

are often watery; very tired on day 3 (took a 1 1/2 nap in the afternoon); very

stiff muscles

>

> Also...very discouraged and frustrated.

> Should he continue on the intro and make some changes...but what?

> Any suggestions?

>

> Eileen

> Mother of 19 yo son with UC

> UC 5 diagnosed at age 4; remission until age 14

> SCD almost 3 months

> no meds

>

[Guest guest]

What always had me stumped was that one of the side effects to both Asacol and Imuran is diarrhea… can anyone please help me to understand WHY drugs that can cause diarrhea are prescribed when diarrhea is a major issue??LOL. This is one of the many things about conventional medicine and wisdom that I find to be rather amusing. I have NO explanation for you whatsoever. I think you just have to accept that it's ridiculous. So, based on the above, is it really worthwhile to do any meds?Well, if they don't help him at all, then it sure isn't. So far the only med I've found to help me is prednisone, and I've tried asacol and Imuran as well. I'm going to try LDN next, which could definitely be something for your son to try if nothing else works. Can anyone share a personal story about how long it took before symptoms of healing started to be seen? And what were some of the initial signs of healing? Maybe he is starting to heal but we aren’t looking for the right signs. I know everyone is different but I was wondering if anyone here has had a similar experience and how they have progressed.Well, 3 months is actually a really short time to be on the diet, in the grand scheme of things. I've been on it a year, and though I haven't seen too much evidence that it's working for me, I'm happy to stay on it because I shudder to think how bad I'd be without it. Since I started trying different diets as soon as I was diagnosed, I have no previous experience with my disease to compare my symptoms now with, if that makes any sense =) The way I look at it, what would you do if you didn't have the diet? Try stronger and stronger meds? Well, do that anyways, if you need it, but then add the diet on top of that because it very well could help, and you might be able to get off the meds someday. Without SOME sort of lifestyle change, there isn't too much hope of ever being cured. Cheers!Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Prednisone 10 mg 1x per day (trying to wean!!!!)

[Guest guest]

We both just read Prassad’s book which was a huge help to me personally in understanding what my son is dealing with emotionally through this. There were so many things in the author’s life that parallels my DS, and I think it was helpful to him as well in terms of putting into words what he is experiencing. That being said, the meds that he was on in the past (from Oct. ’09 – May ’10) were two rounds of Prednisone, Omeprazole (20 mg), Asacol (800 mg. 3xs daily) and then Imuran (125 mg). With all of that, he received no benefit. His stools never firmed up. He has never had the severe bleeding and horrible pain that Prassad and others have talked about. The only “benefit” he saw was a spike in his weight which was initially a thrill for us all. Of course that changed after tapering off and now he is struggling to hang onto his 123 lbs. His lowest point was 109 lbs. in early Oct. He is adamant about not taking any meds at all and is amazingly determined to make this diet work for himself. I am in awe at his discipline but also don’t want him to be stubborn if the meds would actually assist…that just doesn’t seem to be the case.What always had me stumped was that one of the side effects to both Asacol and Imuran is diarrhea… can anyone please help me to understand WHY drugs that can cause diarrhea are prescribed when diarrhea is a major issue??Ostensibly because they have other positive effects not easily obtainable w/other drugs.(Because they don't really understand the illness well enough to have figured out thecorrect therapies for it yet.) With UC, frex, healing ulceration and the cessation of bleeding which leads to anemia. D, after all, or C, is not the worst symptom of the illness - it's the state of the colon - thestate of the intestinal walls, etc. So, based on the above, is it really worthwhile to do any meds?Yeah - LDN + the SCD is really worthwhile for most/many UC and Crohn's people. And many of us are here because the conventional drugs did not really work for useither. They didn't for me. You may also want to consider stool testing or testing for yeast (the OAT) at Genova Diagnostics to find out what he is dealing with specifically. That willhelp treatment. To me, the fact that he reacts so strongly to the smallest amount of probiotics indicates he's definitely got some sort of dysbiosis -bacterial overgrowth - going on. Also, is there a reason he doesn't want to come on and talk to us directly? Sometimes channeling info through a mediator can add a level of inadvertentvagueness or confusion. Can anyone share a personal story about how long it took before symptoms of healing started to be seen? And what were some of the initial signs of healing? Maybe he is starting to heal but we aren’t looking for the right signs. I know everyone is different but I was wondering if anyone here has had a similar experience and how they have progressed.Look for secondary issues - issues you weren't even aware maybe that were related. IOW, has anything improved - mood, state of mind, patience, sleeping, acne, eczema, sciatica, aches and pains, allergies, etc. I am so thankful for the pioneers who have already traveled this path and can offer guidance along the way! Eileen Mother of 19 yo son with UC UC 5 diagnosed at age 4; remission until age 14 SCD almost 3 months no meds Eileen Cawoodemail: parvus@...From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of smdsmom2008Sent: Friday, August 13, 2010 9:58 AMTo: BTVC-SCD Subject: Re: discouraged intro results Hi,I noticed he is not on any meds. Are you opposed to all medication? The reason I asked is because many of us use medication and SCD. If you look at some of the stories of people (like Raman Prassad) who are not on meds, you will see that they started SCD on medication and later, when they had no symptoms- chose to stop ( some against doctor's advice)their meds on their own.Since he has symptoms, you may want to consider staying on SCD and adding a medication too. This is just my thought because I don't think Elaine ever suggested diet as a replacement for medication although for some people this seems to have been the course. The diet is supposed to help, but people have used all avenues to feel better.PJ>> OK...today is day 4 of a second round with the intro diet. THe first time was only for 2 days and we were new to this and moved too quickly into all legals. After no improvement, he wanted to do the intro again. He thinks he should stay on the intro but I thought you should only do it for 5 days max?> > Shouldn't there be some small sign of improvement? Below is what he has existed on all week long.> > Breakfast: 2 scrambled eggs with DCCC added last two days,diluted apple cider or grape juice;cheese cake; one morning some chicken from the soup > Lunch: beef patty (salt,pepper, garlic powder;added a small amount of legal mustard and oregano yesterday)chicken soup, cheese cake,apple cider> Dinner: beef patty, chicken soup, cheese cake; last night had broiled salmon> Drinks: he has diluted his apple cider and grape juice with either club soda or Pellagrino water > > Evening snack (at least 1 1/2 hour before bed): some diluted apple cider and cheesecake> > Supplements:> He had been taking Freeda's SCD Multivitamin (1 only at this point)but hasn't taken any for the past two days.> Probiotic: No yogurt; every time he has tried this stools get worse> He tried SCDolphilus at 1/2 capsule for a week but same thing and stopped.> S. Boulardi:had been taking one but bumped up to two for the past two days based on list recommendation.> > Bottom line results: Frequeny has increased to sometimes 6 per day;stools are often watery; very tired on day 3 (took a 1 1/2 nap in the afternoon); very stiff muscles> > Also...very discouraged and frustrated.> Should he continue on the intro and make some changes...but what?> Any suggestions?> > Eileen> Mother of 19 yo son with UC> UC 5 diagnosed at age 4; remission until age 14> SCD almost 3 months> no meds>

[Guest guest]

A few years ago they gave my sister a drug for high blood pressure. It gave her a heart attack. One of the known, listed side-effects of this drug is.... heart attack. This is supposed to make sense?Lol! Another one to add to my mental list! I love ridiculous drugs, they make me laugh =) As long as I don't have to take them. Cheers!Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Prednisone 10 mg 1x per day (trying to wean!!!!)

[Guest guest]

In September of 09 I started seeing blood in my FIRM bms.. Nothing different just drops of blood... As the blood became more noticeable even a firm bm smelt like I was very sick... My sister was diagnoised with UC several years before.. So the dr. had no hesitation to sch a colon scope. Came back with UC.. no surprise there because we were told it runs in families.. I was told it was VERY mild.. and only noticeable 2 inches into the rectum... I started with Canasa supositories..(very expensive) after a few weeks on this we switched to Asacol...I never saw blood again.. In May of 2010 I started with D... and feeling very sick.. but really high up... in about 3 days time I could not go to work because I could not make the trip to the bathroom.. He scheduled the next scope.. (mothers

dat weekend...joy joy) What I felt was nothing like the time in Sept.. I begged for him to scope both ends.. I felt something was missed.. He said only if he found nothing in the lower scope.. I awoke to be told I was now moderate to sever UC.. And no longer in just the lower colon.. The Asacol had done nothing.. We went to 9 Asacol and Pred.. 40mg.. But only for a couple of months and then started to taper me down by 10mg. every two weeks.. At 20mg. We added the Imuran 75mg. I was down to just one bm at about 7 pm in the evening.. then 3 to 4 more follow up trips to the bathroom before bed.. This worked for me since it did not affect my time at work.. At 10mg.. of pred... I found SCD... Yesterday made my one month.. I am in no way following the steps.. I just do all I can not to eat anything illegal . The almond flour did bring on blood both times I tried it.. So I am staying clear of that... AT

THE RISK OF TMI.... As each week passed while on SCD my bms came to only one to two in the evening.. The start was firm and the rest was soft.. each week more and more was firm and less and less was soft... The past few days I have only had one bm a night with no follow up visits.. AND AT LAST.. ....last night was a totally firm bm...!!! Yeah..

Right now I focus so much on what I eat I forget doses of meds.. Even with the granny 7 day pill box..lol.. I am not intending to get off my meds this soon... Just had a visit on the 10th of Aug.. and he said for me not to back off of the 9 asacol a day until 6 months from now..

The change in my health and bm was just so noticeable with each step ... just no doubt it is making a large difference.. I just struggle with the loss of energy from having loss the rush of the steroids at the same time as the surgars from the way I used to eat...........

Just wanted to share..

UC sept..2009

SCD July 12 2010

Asacol, Imuran, Potassium supl, Simvastatin, Freeda SCD B complex

To: BTVC-SCD Sent: Fri, August 13, 2010 12:21:02 PMSubject: RE: Re: discouraged intro results

We both just read Prassad’s book which was a huge help to me personally in understanding what my son is dealing with emotionally through this. There were so many things in the author’s life that parallels my DS, and I think it was helpful to him as well in terms of putting into words what he is experiencing.

That being said, the meds that he was on in the past (from Oct. ’09 – May ’10) were two rounds of Prednisone, Omeprazole (20 mg), Asacol (800 mg. 3xs daily) and then Imuran (125 mg). With all of that, he received no benefit. His stools never firmed up. He has never had the severe bleeding and horrible pain that Prassad and others have talked about. The only “benefit†he saw was a spike in his weight which was initially a thrill for us all. Of course that changed after tapering off and now he is struggling to hang onto his 123 lbs. His lowest point was 109 lbs. in early Oct. He is adamant about not taking any meds at all and is amazingly determined to make this diet work for himself. I am in awe at his discipline but also don’t want him to be stubborn if the meds would actually assist…that just doesn’t seem to be the

case.

What always had me stumped was that one of the side effects to both Asacol and Imuran is diarrhea… can anyone please help me to understand WHY drugs that can cause diarrhea are prescribed when diarrhea is a major issue??

So, based on the above, is it really worthwhile to do any meds?

Can anyone share a personal story about how long it took before symptoms of healing started to be seen? And what were some of the initial signs of healing? Maybe he is starting to heal but we aren’t looking for the right signs. I know everyone is different but I was wondering if anyone here has had a similar experience and how they have progressed.

I am so thankful for the pioneers who have already traveled this path and can offer guidance along the way!

Eileen Mother of 19 yo son with UC UC 5 diagnosed at age 4; remission until age 14 SCD almost 3 months no meds

Eileen Cawood

email: parvus@...

From: BTVC-SCD [mailto: BTVC-SCD ] On Behalf Of smdsmom2008Sent: Friday, August 13, 2010 9:58 AMTo: BTVC-SCD Subject: Re: discouraged intro results

Hi,I noticed he is not on any meds. Are you opposed to all medication? The reason I asked is because many of us use medication and SCD. If you look at some of the stories of people (like Raman Prassad) who are not on meds, you will see that they started SCD on medication and later, when they had no symptoms- chose to stop ( some against doctor's advice)their meds on their own.Since he has symptoms, you may want to consider staying on SCD and adding a medication too. This is just my thought because I don't think Elaine ever suggested diet as a replacement for medication although for some people this seems to have been the course. The diet is supposed to help, but people have used all avenues to feel better.PJ>> OK...today is day 4 of a second round with the intro diet. THe first time was only for 2 days and we were new to this and moved too quickly into all legals. After no improvement, he wanted to do the intro again. He thinks he should stay on the intro but I thought you should only do it for 5 days max?> > Shouldn't there be some small sign of improvement? Below is what he has existed on all week long.> > Breakfast: 2 scrambled eggs with DCCC added last two days,diluted apple cider or grape juice;cheese cake; one morning some chicken from the soup > Lunch: beef patty (salt,pepper, garlic powder;added a small amount of legal mustard and oregano yesterday)chicken soup, cheese cake,apple cider> Dinner: beef patty, chicken soup, cheese cake; last night had broiled salmon> Drinks: he has

diluted his apple cider and grape juice with either club soda or Pellagrino water > > Evening snack (at least 1 1/2 hour before bed): some diluted apple cider and cheesecake> > Supplements:> He had been taking Freeda's SCD Multivitamin (1 only at this point)but hasn't taken any for the past two days.> Probiotic: No yogurt; every time he has tried this stools get worse> He tried SCDolphilus at 1/2 capsule for a week but same thing and stopped.> S. Boulardi:had been taking one but bumped up to two for the past two days based on list recommendation.> > Bottom line results: Frequeny has increased to sometimes 6 per day;stools are often watery; very tired on day 3 (took a 1 1/2 nap in the afternoon); very stiff muscles> > Also...very discouraged and frustrated.> Should he continue on the intro and make some changes...but what?> Any suggestions?> >

Eileen> Mother of 19 yo son with UC> UC 5 diagnosed at age 4; remission until age 14> SCD almost 3 months> no meds>

[Guest guest]

,I"m so glad you are feeling better. I've only been on the diet a week and am better but not perfect. I find the Prednisone much worse than the disease at this stage. It has the opposite affect on me than it has on you revving you up. I can't do anything but feel woozy and sick and lie around and promise never to eat anything that's bad for me again. And that's even though I've tapered down to 15mg. I'm trying to figure out whether to do what my GI suggests and taper down to 10mg Monday and then back up to 15mg on Tuesday or to do what my ND suggests which is go down to 12.5 on Monday. I'd love to get anyone's thoughts.Congrats on getting better. Avoid the illegals.tteUC since 98Three weeks into flare up.6mp, colozal, prednisone 15mg.Too many herbal things to mention.In September of 09 I started seeing blood in my FIRM bms.. Nothing different just drops of blood... As the blood became more noticeable even a firm bm smelt like I was very sick... My sister was diagnoised with UC several years before.. So the dr. had no hesitation to sch a colon scope. Came back with UC.. no surprise there because we were told it runs in families.. I was told it was VERY mild.. and only noticeable 2 inches into the rectum... I started with Canasa supositories..(very expensive) after a few weeks on this we switched to Asacol...I never saw blood again.. In May of 2010 I started with D... and feeling very sick.. but really high up... in about 3 days time I could not go to work because I could not make the trip to the bathroom.. He scheduled the next scope.. (mothers dat weekend...joy joy) What I felt was nothing like the time in Sept.. I begged for him to scope both ends.. I felt something was missed.. He said only if he found nothing in the lower scope.. I awoke to be told I was now moderate to sever UC.. And no longer in just the lower colon.. The Asacol had done nothing.. We went to 9 Asacol and Pred.. 40mg.. But only for a couple of months and then started to taper me down by 10mg. every two weeks.. At 20mg. We added the Imuran 75mg. I was down to just one bm at about 7 pm in the evening.. then 3 to 4 more follow up trips to the bathroom before bed.. This worked for me since it did not affect my time at work.. At 10mg.. of pred... I found SCD... Yesterday made my one month.. I am in no way following the steps.. I just do all I can not to eat anything illegal . The almond flour did bring on blood both times I tried it.. So I am staying clear of that... AT THE RISK OF TMI.... As each week passed while on SCD my bms came to only one to two in the evening.. The start was firm and the rest was soft.. each week more and more was firm and less and less was soft... The past few days I have only had one bm a night with no follow up visits.. AND AT LAST.. ....last night was a totally firm bm...!!! Yeah..Right now I focus so much on what I eat I forget doses of meds.. Even with the granny 7 day pill box..lol.. I am not intending to get off my meds this soon... Just had a visit on the 10th of Aug.. and he said for me not to back off of the 9 asacol a day until 6 months from now..The change in my health and bm was just so noticeable with each step ... just no doubt it is making a large difference.. I just struggle with the loss of energy from having loss the rush of the steroids at the same time as the surgars from the way I used to eat........... Just wanted to share..UC sept..2009SCD July 12 2010Asacol, Imuran, Potassium supl, Simvastatin, Freeda SCD B complexTo: BTVC-SCD Sent: Fri, August 13, 2010 12:21:02 PMSubject: RE: Re: discouraged intro results We both just read Prassad’s book which was a huge help to me personally in understanding what my son is dealing with emotionally through this. There were so many things in the author’s life that parallels my DS, and I think it was helpful to him as well in terms of putting into words what he is experiencing. That being said, the meds that he was on in the past (from Oct. ’09 – May ’10) were two rounds of Prednisone, Omeprazole (20 mg), Asacol (800 mg. 3xs daily) and then Imuran (125 mg). With all of that, he received no benefit. His stools never firmed up. He has never had the severe bleeding and horrible pain that Prassad and others have talked about. The only “benefit” he saw was a spike in his weight which was initially a thrill for us all. Of course that changed after tapering off and now he is struggling to hang onto his 123 lbs. His lowest point was 109 lbs. in early Oct. He is adamant about not taking any meds at all and is amazingly determined to make this diet work for himself. I am in awe at his discipline but also don’t want him to be stubborn if the meds would actually assist…that just doesn’t seem to be the case.What always had me stumped was that one of the side effects to both Asacol and Imuran is diarrhea… can anyone please help me to understand WHY drugs that can cause diarrhea are prescribed when diarrhea is a major issue?? So, based on the above, is it really worthwhile to do any meds? Can anyone share a personal story about how long it took before symptoms of healing started to be seen? And what were some of the initial signs of healing? Maybe he is starting to heal but we aren’t looking for the right signs. I know everyone is different but I was wondering if anyone here has had a similar experience and how they have progressed. I am so thankful for the pioneers who have already traveled this path and can offer guidance along the way! Eileen Mother of 19 yo son with UC UC 5 diagnosed at age 4; remission until age 14 SCD almost 3 months no meds Eileen Cawoodemail: parvus@...From: BTVC-SCD [mailto: BTVC-SCD ] On Behalf Of smdsmom2008Sent: Friday, August 13, 2010 9:58 AMTo: BTVC-SCD Subject: Re: discouraged intro results Hi,I noticed he is not on any meds. Are you opposed to all medication? The reason I asked is because many of us use medication and SCD. If you look at some of the stories of people (like Raman Prassad) who are not on meds, you will see that they started SCD on medication and later, when they had no symptoms- chose to stop ( some against doctor's advice)their meds on their own.Since he has symptoms, you may want to consider staying on SCD and adding a medication too. This is just my thought because I don't think Elaine ever suggested diet as a replacement for medication although for some people this seems to have been the course. The diet is supposed to help, but people have used all avenues to feel better.PJ>> OK...today is day 4 of a second round with the intro diet. THe first time was only for 2 days and we were new to this and moved too quickly into all legals. After no improvement, he wanted to do the intro again. He thinks he should stay on the intro but I thought you should only do it for 5 days max?> > Shouldn't there be some small sign of improvement? Below is what he has existed on all week long.> > Breakfast: 2 scrambled eggs with DCCC added last two days,diluted apple cider or grape juice;cheese cake; one morning some chicken from the soup > Lunch: beef patty (salt,pepper, garlic powder;added a small amount of legal mustard and oregano yesterday)chicken soup, cheese cake,apple cider> Dinner: beef patty, chicken soup, cheese cake; last night had broiled salmon> Drinks: he has diluted his apple cider and grape juice with either club soda or Pellagrino water > > Evening snack (at least 1 1/2 hour before bed): some diluted apple cider and cheesecake> > Supplements:> He had been taking Freeda's SCD Multivitamin (1 only at this point)but hasn't taken any for the past two days.> Probiotic: No yogurt; every time he has tried this stools get worse> He tried SCDolphilus at 1/2 capsule for a week but same thing and stopped.> S. Boulardi:had been taking one but bumped up to two for the past two days based on list recommendation.> > Bottom line results: Frequeny has increased to sometimes 6 per day;stools are often watery; very tired on day 3 (took a 1 1/2 nap in the afternoon); very stiff muscles> > Also...very discouraged and frustrated.> Should he continue on the intro and make some changes...but what?> Any suggestions?> > Eileen> Mother of 19 yo son with UC> UC 5 diagnosed at age 4; remission until age 14> SCD almost 3 months> no meds>

[Guest guest]

I can only go with what my sister recommended.. we were surprised at how well I handled coming down from the pred... She said going down by smaller doses works so much better.. I vote for the 12.5 instead of the 15 and alternate with that .. then drop again.. She was shocked that he dropped me by 10 at every two weeks.. she felt that was way to fast... and then to go from 10 to nothing was not recommended either...... but i made it.... She lives in California and me in Louisiana.... We live and learn...

To: BTVC-SCD Sent: Fri, August 13, 2010 10:55:16 PMSubject: Re: Re: discouraged intro results

, I"m so glad you are feeling better. I've only been on the diet a week and am better but not perfect. I find the Prednisone much worse than the disease at this stage. It has the opposite affect on me than it has on you revving you up. I can't do anything but feel woozy and sick and lie around and promise never to eat anything that's bad for me again. And that's even though I've tapered down to 15mg. I'm trying to figure out whether to do what my GI suggests and taper down to 10mg Monday and then back up to 15mg on Tuesday or to do what my ND suggests which is go down to 12.5 on Monday. I'd love to get anyone's thoughts. Congrats on getting better. Avoid the illegals.

tte

UC since 98

Three weeks into flare up.

6mp, colozal, prednisone 15mg.

Too many herbal things to mention.

In September of 09 I started seeing blood in my FIRM bms.. Nothing different just drops of blood... As the blood became more noticeable even a firm bm smelt like I was very sick... My sister was diagnoised with UC several years before.. So the dr. had no hesitation to sch a colon scope. Came back with UC.. no surprise there because we were told it runs in families.. I was told it was VERY mild.. and only noticeable 2 inches into the rectum... I started with Canasa supositories..(very expensive) after a few weeks on this we switched to Asacol...I never saw blood again.. In May of 2010 I started with D... and feeling very sick.. but really high up... in about 3 days time I could not go to work because I could not make the trip to the bathroom.. He scheduled the next scope.. (mothers dat weekend...joy joy) What I felt was nothing like the time in Sept.. I begged for him to scope both ends.. I felt something was missed.. He said only

if he found nothing in the lower scope.. I awoke to be told I was now moderate to sever UC.. And no longer in just the lower colon.. The Asacol had done nothing.. We went to 9 Asacol and Pred.. 40mg.. But only for a couple of months and then started to taper me down by 10mg. every two weeks.. At 20mg. We added the Imuran 75mg. I was down to just one bm at about 7 pm in the evening.. then 3 to 4 more follow up trips to the bathroom before bed.. This worked for me since it did not affect my time at work.. At 10mg.. of pred... I found SCD... Yesterday made my one month.. I am in no way following the steps.. I just do all I can not to eat anything illegal . The almond flour did bring on blood both times I tried it.. So I am staying clear of that... AT THE RISK OF TMI.... As each week passed while on SCD my bms came to only one to two in the evening.. The start was firm and the rest was soft.. each week

more and more was firm and less and less was soft... The past few days I have only had one bm a night with no follow up visits.. AND AT LAST.. ....last night was a totally firm bm...!!! Yeah..

Right now I focus so much on what I eat I forget doses of meds.. Even with the granny 7 day pill box..lol.. I am not intending to get off my meds this soon... Just had a visit on the 10th of Aug.. and he said for me not to back off of the 9 asacol a day until 6 months from now..

The change in my health and bm was just so noticeable with each step ... just no doubt it is making a large difference.. I just struggle with the loss of energy from having loss the rush of the steroids at the same time as the surgars from the way I used to eat...........

Just wanted to share..

UC sept..2009

SCD July 12 2010

Asacol, Imuran, Potassium supl, Simvastatin, Freeda SCD B complex

To: BTVC-SCD Sent: Fri, August 13, 2010 12:21:02 PMSubject: RE: Re: discouraged intro results

We both just read Prassad’s book which was a huge help to me personally in understanding what my son is dealing with emotionally through this. There were so many things in the author’s life that parallels my DS, and I think it was helpful to him as well in terms of putting into words what he is experiencing.

That being said, the meds that he was on in the past (from Oct. ’09 – May ’10) were two rounds of Prednisone, Omeprazole (20 mg), Asacol (800 mg. 3xs daily) and then Imuran (125 mg). With all of that, he received no benefit. His stools never firmed up. He has never had the severe bleeding and horrible pain that Prassad and others have talked about. The only “benefit†he saw was a spike in his weight which was initially a thrill for us all. Of course that changed after tapering off and now he is struggling to hang onto his 123 lbs. His lowest point was 109 lbs. in early Oct. He is adamant about not taking any meds at all and is amazingly determined to make this diet work for himself. I am in awe at his discipline but also don’t want him to be stubborn if the meds would actually assist…that just doesn’t seem to be the

case.

What always had me stumped was that one of the side effects to both Asacol and Imuran is diarrhea… can anyone please help me to understand WHY drugs that can cause diarrhea are prescribed when diarrhea is a major issue??

So, based on the above, is it really worthwhile to do any meds?

Can anyone share a personal story about how long it took before symptoms of healing started to be seen? And what were some of the initial signs of healing? Maybe he is starting to heal but we aren’t looking for the right signs. I know everyone is different but I was wondering if anyone here has had a similar experience and how they have progressed.

I am so thankful for the pioneers who have already traveled this path and can offer guidance along the way!

Eileen Mother of 19 yo son with UC UC 5 diagnosed at age 4; remission until age 14 SCD almost 3 months no meds

Eileen Cawood

email: parvus@...

From: BTVC-SCD [mailto: BTVC-SCD ] On Behalf Of smdsmom2008Sent: Friday, August 13, 2010 9:58 AMTo: BTVC-SCD Subject: Re: discouraged intro results

Hi,I noticed he is not on any meds. Are you opposed to all medication? The reason I asked is because many of us use medication and SCD. If you look at some of the stories of people (like Raman Prassad) who are not on meds, you will see that they started SCD on medication and later, when they had no symptoms- chose to stop ( some against doctor's advice)their meds on their own.Since he has symptoms, you may want to consider staying on SCD and adding a medication too. This is just my thought because I don't think Elaine ever suggested diet as a replacement for medication although for some people this seems to have been the course. The diet is supposed to help, but people have used all avenues to feel better.PJ>> OK...today is day 4 of a second round with the intro diet. THe first time was only for 2 days and we were new to this and moved too quickly into all legals. After no improvement, he wanted to do the intro again. He thinks he should stay on the intro but I thought you should only do it for 5 days max?> > Shouldn't there be some small sign of improvement? Below is what he has existed on all week long.> > Breakfast: 2 scrambled eggs with DCCC added last two days,diluted apple cider or grape juice;cheese cake; one morning some chicken from the soup > Lunch: beef patty

(salt,pepper, garlic powder;added a small amount of legal mustard and oregano yesterday)chicken soup, cheese cake,apple cider> Dinner: beef patty, chicken soup, cheese cake; last night had broiled salmon> Drinks: he has diluted his apple cider and grape juice with either club soda or Pellagrino water > > Evening snack (at least 1 1/2 hour before bed): some diluted apple cider and cheesecake> > Supplements:> He had been taking Freeda's SCD Multivitamin (1 only at this point)but hasn't taken any for the past two days.> Probiotic: No yogurt; every time he has tried this stools get worse> He tried SCDolphilus at 1/2 capsule for a week but same thing and stopped.> S. Boulardi:had been taking one but bumped up to two for the past two days based on list

recommendation.> > Bottom line results: Frequeny has increased to sometimes 6 per day;stools are often watery; very tired on day 3 (took a 1 1/2 nap in the afternoon); very stiff muscles> > Also...very discouraged and frustrated.> Should he continue on the intro and make some changes...but what?> Any suggestions?> > Eileen> Mother of 19 yo son with UC> UC 5 diagnosed at age 4; remission until age 14> SCD almost 3 months> no meds>

[Guest guest]

oopss.. I was supposed to say.. 12.5 instead of the 10 ........you are already at the 15... sorry about that..

To: BTVC-SCD Sent: Fri, August 13, 2010 11:16:30 PMSubject: Re: Re: discouraged intro results

I can only go with what my sister recommended.. we were surprised at how well I handled coming down from the pred... She said going down by smaller doses works so much better.. I vote for the 12.5 instead of the 15 and alternate with that .. then drop again.. She was shocked that he dropped me by 10 at every two weeks.. she felt that was way to fast... and then to go from 10 to nothing was not recommended either...... but i made it.... She lives in California and me in Louisiana.... We live and learn...

To: BTVC-SCD Sent: Fri, August 13, 2010 10:55:16 PMSubject: Re: Re: discouraged intro results

, I"m so glad you are feeling better. I've only been on the diet a week and am better but not perfect. I find the Prednisone much worse than the disease at this stage. It has the opposite affect on me than it has on you revving you up. I can't do anything but feel woozy and sick and lie around and promise never to eat anything that's bad for me again. And that's even though I've tapered down to 15mg. I'm trying to figure out whether to do what my GI suggests and taper down to 10mg Monday and then back up to 15mg on Tuesday or to do what my ND suggests which is go down to 12.5 on Monday. I'd love to get anyone's thoughts. Congrats on getting better. Avoid the illegals.

tte

UC since 98

Three weeks into flare up.

6mp, colozal, prednisone 15mg.

Too many herbal things to mention.

In September of 09 I started seeing blood in my FIRM bms.. Nothing different just drops of blood... As the blood became more noticeable even a firm bm smelt like I was very sick... My sister was diagnoised with UC several years before.. So the dr. had no hesitation to sch a colon scope. Came back with UC.. no surprise there because we were told it runs in families.. I was told it was VERY mild.. and only noticeable 2 inches into the rectum... I started with Canasa supositories..(very expensive) after a few weeks on this we switched to Asacol...I never saw blood again.. In May of 2010 I started with D... and feeling very sick.. but really high up... in about 3 days time I could not go to work because I could not make the trip to the bathroom.. He scheduled the next scope.. (mothers dat weekend...joy joy) What I felt was nothing like the time in Sept.. I begged for him to scope both ends.. I felt something was missed.. He said only

if he found nothing in the lower scope.. I awoke to be told I was now moderate to sever UC.. And no longer in just the lower colon.. The Asacol had done nothing.. We went to 9 Asacol and Pred.. 40mg.. But only for a couple of months and then started to taper me down by 10mg. every two weeks.. At 20mg. We added the Imuran 75mg. I was down to just one bm at about 7 pm in the evening.. then 3 to 4 more follow up trips to the bathroom before bed.. This worked for me since it did not affect my time at work.. At 10mg.. of pred... I found SCD... Yesterday made my one month.. I am in no way following the steps.. I just do all I can not to eat anything illegal . The almond flour did bring on blood both times I tried it.. So I am staying clear of that... AT THE RISK OF TMI.... As each week passed while on SCD my bms came to only one to two in the evening.. The start was firm and the rest was soft.. each week

more and more was firm and less and less was soft... The past few days I have only had one bm a night with no follow up visits.. AND AT LAST.. ....last night was a totally firm bm...!!! Yeah..

Right now I focus so much on what I eat I forget doses of meds.. Even with the granny 7 day pill box..lol.. I am not intending to get off my meds this soon... Just had a visit on the 10th of Aug.. and he said for me not to back off of the 9 asacol a day until 6 months from now..

The change in my health and bm was just so noticeable with each step ... just no doubt it is making a large difference.. I just struggle with the loss of energy from having loss the rush of the steroids at the same time as the surgars from the way I used to eat...........

Just wanted to share..

UC sept..2009

SCD July 12 2010

Asacol, Imuran, Potassium supl, Simvastatin, Freeda SCD B complex

To: BTVC-SCD Sent: Fri, August 13, 2010 12:21:02 PMSubject: RE: Re: discouraged intro results

We both just read Prassad’s book which was a huge help to me personally in understanding what my son is dealing with emotionally through this. There were so many things in the author’s life that parallels my DS, and I think it was helpful to him as well in terms of putting into words what he is experiencing.

That being said, the meds that he was on in the past (from Oct. ’09 – May ’10) were two rounds of Prednisone, Omeprazole (20 mg), Asacol (800 mg. 3xs daily) and then Imuran (125 mg). With all of that, he received no benefit. His stools never firmed up. He has never had the severe bleeding and horrible pain that Prassad and others have talked about. The only “benefit†he saw was a spike in his weight which was initially a thrill for us all. Of course that changed after tapering off and now he is struggling to hang onto his 123 lbs. His lowest point was 109 lbs. in early Oct. He is adamant about not taking any meds at all and is amazingly determined to make this diet work for himself. I am in awe at his discipline but also don’t want him to be stubborn if the meds would actually assist…that just doesn’t seem to be the

case.

What always had me stumped was that one of the side effects to both Asacol and Imuran is diarrhea… can anyone please help me to understand WHY drugs that can cause diarrhea are prescribed when diarrhea is a major issue??

So, based on the above, is it really worthwhile to do any meds?

Can anyone share a personal story about how long it took before symptoms of healing started to be seen? And what were some of the initial signs of healing? Maybe he is starting to heal but we aren’t looking for the right signs. I know everyone is different but I was wondering if anyone here has had a similar experience and how they have progressed.

I am so thankful for the pioneers who have already traveled this path and can offer guidance along the way!

Eileen Mother of 19 yo son with UC UC 5 diagnosed at age 4; remission until age 14 SCD almost 3 months no meds

Eileen Cawood

email: parvus@...

From: BTVC-SCD [mailto: BTVC-SCD ] On Behalf Of smdsmom2008Sent: Friday, August 13, 2010 9:58 AMTo: BTVC-SCD Subject: Re: discouraged intro results

Hi,I noticed he is not on any meds. Are you opposed to all medication? The reason I asked is because many of us use medication and SCD. If you look at some of the stories of people (like Raman Prassad) who are not on meds, you will see that they started SCD on medication and later, when they had no symptoms- chose to stop ( some against doctor's advice)their meds on their own.Since he has symptoms, you may want to consider staying on SCD and adding a medication too. This is just my thought because I don't think Elaine ever suggested diet as a replacement for medication although for some people this seems to have been the course. The diet is supposed to help, but people have used all avenues to feel better.PJ>> OK...today is day 4 of a second round with the intro diet. THe first time was only for 2 days and we were new to this and moved too quickly into all legals. After no improvement, he wanted to do the intro again. He thinks he should stay on the intro but I thought you should only do it for 5 days max?> > Shouldn't there be some small sign of improvement? Below is what he has existed on all week long.> > Breakfast: 2 scrambled eggs with DCCC added last two days,diluted apple cider or grape juice;cheese cake; one morning some chicken from the soup > Lunch: beef patty

(salt,pepper, garlic powder;added a small amount of legal mustard and oregano yesterday)chicken soup, cheese cake,apple cider> Dinner: beef patty, chicken soup, cheese cake; last night had broiled salmon> Drinks: he has diluted his apple cider and grape juice with either club soda or Pellagrino water > > Evening snack (at least 1 1/2 hour before bed): some diluted apple cider and cheesecake> > Supplements:> He had been taking Freeda's SCD Multivitamin (1 only at this point)but hasn't taken any for the past two days.> Probiotic: No yogurt; every time he has tried this stools get worse> He tried SCDolphilus at 1/2 capsule for a week but same thing and stopped.> S. Boulardi:had been taking one but bumped up to two for the past two days based on list

recommendation.> > Bottom line results: Frequeny has increased to sometimes 6 per day;stools are often watery; very tired on day 3 (took a 1 1/2 nap in the afternoon); very stiff muscles> > Also...very discouraged and frustrated.> Should he continue on the intro and make some changes...but what?> Any suggestions?> > Eileen> Mother of 19 yo son with UC> UC 5 diagnosed at age 4; remission until age 14> SCD almost 3 months> no meds>

[Guest guest]

So go from 12.5 to 15 or I was going to just go to 12.5 for 7 days after 7 days at 15mg. oopss.. I was supposed to say.. 12.5 instead of the 10 ........you are already at the 15... sorry about that..To: BTVC-SCD Sent: Fri, August 13, 2010 11:16:30 PMSubject: Re: Re: discouraged intro results I can only go with what my sister recommended.. we were surprised at how well I handled coming down from the pred... She said going down by smaller doses works so much better.. I vote for the 12.5 instead of the 15 and alternate with that .. then drop again.. She was shocked that he dropped me by 10 at every two weeks.. she felt that was way to fast... and then to go from 10 to nothing was not recommended either...... but i made it.... She lives in California and me in Louisiana.... We live and learn...To: BTVC-SCD Sent: Fri, August 13, 2010 10:55:16 PMSubject: Re: Re: discouraged intro results ,I"m so glad you are feeling better. I've only been on the diet a week and am better but not perfect. I find the Prednisone much worse than the disease at this stage. It has the opposite affect on me than it has on you revving you up. I can't do anything but feel woozy and sick and lie around and promise never to eat anything that's bad for me again. And that's even though I've tapered down to 15mg. I'm trying to figure out whether to do what my GI suggests and taper down to 10mg Monday and then back up to 15mg on Tuesday or to do what my ND suggests which is go down to 12.5 on Monday. I'd love to get anyone's thoughts.Congrats on getting better. Avoid the illegals.tteUC since 98Three weeks into flare up.6mp, colozal, prednisone 15mg.Too many herbal things to mention.In September of 09 I started seeing blood in my FIRM bms.. Nothing different just drops of blood... As the blood became more noticeable even a firm bm smelt like I was very sick... My sister was diagnoised with UC several years before.. So the dr. had no hesitation to sch a colon scope. Came back with UC.. no surprise there because we were told it runs in families.. I was told it was VERY mild.. and only noticeable 2 inches into the rectum... I started with Canasa supositories..(very expensive) after a few weeks on this we switched to Asacol...I never saw blood again.. In May of 2010 I started with D... and feeling very sick.. but really high up... in about 3 days time I could not go to work because I could not make the trip to the bathroom.. He scheduled the next scope.. (mothers dat weekend...joy joy) What I felt was nothing like the time in Sept.. I begged for him to scope both ends.. I felt something was missed.. He said only if he found nothing in the lower scope.. I awoke to be told I was now moderate to sever UC.. And no longer in just the lower colon.. The Asacol had done nothing.. We went to 9 Asacol and Pred.. 40mg.. But only for a couple of months and then started to taper me down by 10mg. every two weeks.. At 20mg. We added the Imuran 75mg. I was down to just one bm at about 7 pm in the evening.. then 3 to 4 more follow up trips to the bathroom before bed.. This worked for me since it did not affect my time at work.. At 10mg.. of pred... I found SCD... Yesterday made my one month.. I am in no way following the steps.. I just do all I can not to eat anything illegal . The almond flour did bring on blood both times I tried it.. So I am staying clear of that... AT THE RISK OF TMI.... As each week passed while on SCD my bms came to only one to two in the evening.. The start was firm and the rest was soft.. each week more and more was firm and less and less was soft... The past few days I have only had one bm a night with no follow up visits.. AND AT LAST.. ....last night was a totally firm bm...!!! Yeah..Right now I focus so much on what I eat I forget doses of meds.. Even with the granny 7 day pill box..lol.. I am not intending to get off my meds this soon... Just had a visit on the 10th of Aug.. and he said for me not to back off of the 9 asacol a day until 6 months from now..The change in my health and bm was just so noticeable with each step ... just no doubt it is making a large difference.. I just struggle with the loss of energy from having loss the rush of the steroids at the same time as the surgars from the way I used to eat........... Just wanted to share..UC sept..2009SCD July 12 2010Asacol, Imuran, Potassium supl, Simvastatin, Freeda SCD B complexTo: BTVC-SCD Sent: Fri, August 13, 2010 12:21:02 PMSubject: RE: Re: discouraged intro results We both just read Prassad’s book which was a huge help to me personally in understanding what my son is dealing with emotionally through this. There were so many things in the author’s life that parallels my DS, and I think it was helpful to him as well in terms of putting into words what he is experiencing. That being said, the meds that he was on in the past (from Oct. ’09 – May ’10) were two rounds of Prednisone, Omeprazole (20 mg), Asacol (800 mg. 3xs daily) and then Imuran (125 mg). With all of that, he received no benefit. His stools never firmed up. He has never had the severe bleeding and horrible pain that Prassad and others have talked about. The only “benefit” he saw was a spike in his weight which was initially a thrill for us all. Of course that changed after tapering off and now he is struggling to hang onto his 123 lbs. His lowest point was 109 lbs. in early Oct. He is adamant about not taking any meds at all and is amazingly determined to make this diet work for himself. I am in awe at his discipline but also don’t want him to be stubborn if the meds would actually assist…that just doesn’t seem to be the case.What always had me stumped was that one of the side effects to both Asacol and Imuran is diarrhea… can anyone please help me to understand WHY drugs that can cause diarrhea are prescribed when diarrhea is a major issue?? So, based on the above, is it really worthwhile to do any meds? Can anyone share a personal story about how long it took before symptoms of healing started to be seen? And what were some of the initial signs of healing? Maybe he is starting to heal but we aren’t looking for the right signs. I know everyone is different but I was wondering if anyone here has had a similar experience and how they have progressed. I am so thankful for the pioneers who have already traveled this path and can offer guidance along the way! Eileen Mother of 19 yo son with UC UC 5 diagnosed at age 4; remission until age 14 SCD almost 3 months no meds Eileen Cawoodemail: parvus@...From: BTVC-SCD [mailto: BTVC-SCD ] On Behalf Of smdsmom2008Sent: Friday, August 13, 2010 9:58 AMTo: BTVC-SCD Subject: Re: discouraged intro results Hi,I noticed he is not on any meds. Are you opposed to all medication? The reason I asked is because many of us use medication and SCD. If you look at some of the stories of people (like Raman Prassad) who are not on meds, you will see that they started SCD on medication and later, when they had no symptoms- chose to stop ( some against doctor's advice)their meds on their own.Since he has symptoms, you may want to consider staying on SCD and adding a medication too. This is just my thought because I don't think Elaine ever suggested diet as a replacement for medication although for some people this seems to have been the course. The diet is supposed to help, but people have used all avenues to feel better.PJ>> OK...today is day 4 of a second round with the intro diet. THe first time was only for 2 days and we were new to this and moved too quickly into all legals. After no improvement, he wanted to do the intro again. He thinks he should stay on the intro but I thought you should only do it for 5 days max?> > Shouldn't there be some small sign of improvement? Below is what he has existed on all week long.> > Breakfast: 2 scrambled eggs with DCCC added last two days,diluted apple cider or grape juice;cheese cake; one morning some chicken from the soup > Lunch: beef patty (salt,pepper, garlic powder;added a small amount of legal mustard and oregano yesterday)chicken soup, cheese cake,apple cider> Dinner: beef patty, chicken soup, cheese cake; last night had broiled salmon> Drinks: he has diluted his apple cider and grape juice with either club soda or Pellagrino water > > Evening snack (at least 1 1/2 hour before bed): some diluted apple cider and cheesecake> > Supplements:> He had been taking Freeda's SCD Multivitamin (1 only at this point)but hasn't taken any for the past two days.> Probiotic: No yogurt; every time he has tried this stools get worse> He tried SCDolphilus at 1/2 capsule for a week but same thing and stopped.> S. Boulardi:had been taking one but bumped up to two for the past two days based on list recommendation.> > Bottom line results: Frequeny has increased to sometimes 6 per day;stools are often watery; very tired on day 3 (took a 1 1/2 nap in the afternoon); very stiff muscles> > Also...very discouraged and frustrated.> Should he continue on the intro and make some changes...but what?> Any suggestions?> > Eileen> Mother of 19 yo son with UC> UC 5 diagnosed at age 4; remission until age 14> SCD almost 3 months> no meds>

[Guest guest]

Either way.. I have heard both... Just to do it in small steps and slower.. Just not from 15 to 10.. too big of a step for some.. I was just really blessed...

To: BTVC-SCD Sent: Fri, August 13, 2010 11:40:28 PMSubject: Re: Re: discouraged intro resultsSo go from 12.5 to 15 or I was going to just go to 12.5 for 7 days after 7 days at 15mg.

oopss.. I was supposed to say.. 12.5 instead of the 10 ........you are already at the 15... sorry about that..

To: BTVC-SCD Sent: Fri, August 13, 2010 11:16:30 PMSubject: Re: Re: discouraged intro results

I can only go with what my sister recommended.. we were surprised at how well I handled coming down from the pred... She said going down by smaller doses works so much better.. I vote for the 12.5 instead of the 15 and alternate with that .. then drop again.. She was shocked that he dropped me by 10 at every two weeks.. she felt that was way to fast... and then to go from 10 to nothing was not recommended either...... but i made it.... She lives in California and me in Louisiana.... We live and learn...

To: BTVC-SCD Sent: Fri, August 13, 2010 10:55:16 PMSubject: Re: Re: discouraged intro results

,

I"m so glad you are feeling better. I've only been on the diet a week and am better but not perfect. I find the Prednisone much worse than the disease at this stage. It has the opposite affect on me than it has on you revving you up. I can't do anything but feel woozy and sick and lie around and promise never to eat anything that's bad for me again. And that's even though I've tapered down to 15mg. I'm trying to figure out whether to do what my GI suggests and taper down to 10mg Monday and then back up to 15mg on Tuesday or to do what my ND suggests which is go down to 12.5 on Monday. I'd love to get anyone's thoughts. Congrats on getting better. Avoid the illegals.

tte

UC since 98

Three weeks into flare up.

6mp, colozal, prednisone 15mg.

Too many herbal things to mention.

In September of 09 I started seeing blood in my FIRM bms.. Nothing different just drops of blood... As the blood became more noticeable even a firm bm smelt like I was very sick... My sister was diagnoised with UC several years before.. So the dr. had no hesitation to sch a colon scope. Came back with UC.. no surprise there because we were told it runs in families.. I was told it was VERY mild.. and only noticeable 2 inches into the rectum... I started with Canasa supositories..(very expensive) after a few weeks on this we switched to Asacol...I never saw blood again.. In May of 2010 I started with D... and feeling very sick.. but really high up... in about 3 days time I could not go to work because I could not make the trip to the bathroom.. He scheduled the next scope.. (mothers dat weekend...joy joy) What I felt was nothing like the time in Sept.. I begged for him to scope both ends.. I felt

something was missed.. He said only if he found nothing in the lower scope.. I awoke to be told I was now moderate to sever UC.. And no longer in just the lower colon.. The Asacol had done nothing.. We went to 9 Asacol and Pred.. 40mg.. But only for a couple of months and then started to taper me down by 10mg. every two weeks.. At 20mg. We added the Imuran 75mg. I was down to just one bm at about 7 pm in the evening.. then 3 to 4 more follow up trips to the bathroom before bed.. This worked for me since it did not affect my time at work.. At 10mg.. of pred... I found SCD... Yesterday made my one month.. I am in no way following the steps.. I just do all I can not to eat anything illegal . The almond flour did bring on blood both times I tried it.. So I am staying clear of that... AT THE RISK OF TMI.... As each week passed while on SCD my bms came to only one to two in the evening.. The start was firm

and the rest was soft.. each week more and more was firm and less and less was soft... The past few days I have only had one bm a night with no follow up visits.. AND AT LAST.. ....last night was a totally firm bm...!!! Yeah..

Right now I focus so much on what I eat I forget doses of meds.. Even with the granny 7 day pill box..lol.. I am not intending to get off my meds this soon... Just had a visit on the 10th of Aug.. and he said for me not to back off of the 9 asacol a day until 6 months from now..

The change in my health and bm was just so noticeable with each step ... just no doubt it is making a large difference.. I just struggle with the loss of energy from having loss the rush of the steroids at the same time as the surgars from the way I used to eat...........

Just wanted to share..

UC sept..2009

SCD July 12 2010

Asacol, Imuran, Potassium supl, Simvastatin, Freeda SCD B complex

To: BTVC-SCD Sent: Fri, August 13, 2010 12:21:02 PMSubject: RE: Re: discouraged intro results

We both just read Prassad’s book which was a huge help to me personally in understanding what my son is dealing with emotionally through this. There were so many things in the author’s life that parallels my DS, and I think it was helpful to him as well in terms of putting into words what he is experiencing.

That being said, the meds that he was on in the past (from Oct. ’09 – May ’10) were two rounds of Prednisone, Omeprazole (20 mg), Asacol (800 mg. 3xs daily) and then Imuran (125 mg). With all of that, he received no benefit. His stools never firmed up. He has never had the severe bleeding and horrible pain that Prassad and others have talked about. The only “benefit†he saw was a spike in his weight which was initially a thrill for us all. Of course that changed after tapering off and now he is struggling to hang onto his 123 lbs. His lowest point was 109 lbs. in early Oct. He is adamant about not taking any meds at all and is amazingly determined to make this diet work for himself. I am in awe at his discipline but also don’t want him

to be stubborn if the meds would actually assist…that just doesn’t seem to be the case.

What always had me stumped was that one of the side effects to both Asacol and Imuran is diarrhea… can anyone please help me to understand WHY drugs that can cause diarrhea are prescribed when diarrhea is a major issue??

So, based on the above, is it really worthwhile to do any meds?

Can anyone share a personal story about how long it took before symptoms of healing started to be seen? And what were some of the initial signs of healing? Maybe he is starting to heal but we aren’t looking for the right signs. I know everyone is different but I was wondering if anyone here has had a similar experience and how they have progressed.

I am so thankful for the pioneers who have already traveled this path and can offer guidance along the way!

Eileen Mother of 19 yo son with UC UC 5 diagnosed at age 4; remission until age 14 SCD almost 3 months no meds

Eileen Cawood

email: parvus@...

From: BTVC-SCD [mailto: BTVC-SCD ] On Behalf Of smdsmom2008Sent: Friday, August 13, 2010 9:58 AMTo: BTVC-SCD Subject: Re: discouraged intro results

Hi,I noticed he is not on any meds. Are you opposed to all medication? The reason I asked is because many of us use medication and SCD. If you look at some of the stories of people (like Raman Prassad) who are not on meds, you will see that they started SCD on medication and later, when they had no symptoms- chose to stop ( some against doctor's advice)their meds on their own.Since he has symptoms, you may want to consider staying on SCD and adding a medication too. This is just my thought because I don't think Elaine ever suggested diet as a replacement for

medication although for some people this seems to have been the course. The diet is supposed to help, but people have used all avenues to feel better.PJ>> OK...today is day 4 of a second round with the intro diet. THe first time was only for 2 days and we were new to this and moved too quickly into all legals. After no improvement, he wanted to do the intro again. He thinks he should stay on the intro but I thought you should

only do it for 5 days max?> > Shouldn't there be some small sign of improvement? Below is what he has existed on all week long.> > Breakfast: 2 scrambled eggs with DCCC added last two days,diluted apple cider or grape juice;cheese cake; one morning some chicken from the soup > Lunch: beef patty (salt,pepper, garlic powder;added a small amount of legal mustard and oregano yesterday)chicken soup, cheese cake,apple cider> Dinner: beef patty, chicken soup, cheese cake; last night had broiled salmon>

Drinks: he has diluted his apple cider and grape juice with either club soda or Pellagrino water > > Evening snack (at least 1 1/2 hour before bed): some diluted apple cider and cheesecake> > Supplements:> He had been taking Freeda's SCD Multivitamin (1 only at this point)but hasn't taken any for the past two days.> Probiotic: No yogurt; every time he has tried this stools get worse> He tried SCDolphilus at 1/2 capsule for a week but same thing and stopped.> S.

Boulardi:had been taking one but bumped up to two for the past two days based on list recommendation.> > Bottom line results: Frequeny has increased to sometimes 6 per day;stools are often watery; very tired on day 3 (took a 1 1/2 nap in the afternoon); very stiff muscles> > Also...very discouraged and frustrated.> Should he continue on the intro and make some changes...but what?> Any suggestions?> > Eileen> Mother of 19 yo

son with UC> UC 5 diagnosed at age 4; remission until age 14> SCD almost 3 months> no meds>

[Guest guest]

OK will do. I guess I shouldn't ask what happens if it's done too quickly? Either way.. I have heard both... Just to do it in small steps and slower.. Just not from 15 to 10.. too big of a step for some.. I was just really blessed...To: BTVC-SCD Sent: Fri, August 13, 2010 11:40:28 PMSubject: Re: Re: discouraged intro resultsSo go from 12.5 to 15 or I was going to just go to 12.5 for 7 days after 7 days at 15mg.<hohnen_esig_B_60red.png>oopss.. I was supposed to say.. 12.5 instead of the 10 ........you are already at the 15... sorry about that..To: BTVC-SCD Sent: Fri, August 13, 2010 11:16:30 PMSubject: Re: Re: discouraged intro results I can only go with what my sister recommended.. we were surprised at how well I handled coming down from the pred... She said going down by smaller doses works so much better.. I vote for the 12.5 instead of the 15 and alternate with that .. then drop again.. She was shocked that he dropped me by 10 at every two weeks.. she felt that was way to fast... and then to go from 10 to nothing was not recommended either...... but i made it.... She lives in California and me in Louisiana.... We live and learn...To: BTVC-SCD Sent: Fri, August 13, 2010 10:55:16 PMSubject: Re: Re: discouraged intro results ,I"m so glad you are feeling better. I've only been on the diet a week and am better but not perfect. I find the Prednisone much worse than the disease at this stage. It has the opposite affect on me than it has on you revving you up. I can't do anything but feel woozy and sick and lie around and promise never to eat anything that's bad for me again. And that's even though I've tapered down to 15mg. I'm trying to figure out whether to do what my GI suggests and taper down to 10mg Monday and then back up to 15mg on Tuesday or to do what my ND suggests which is go down to 12.5 on Monday. I'd love to get anyone's thoughts.Congrats on getting better. Avoid the illegals.tteUC since 98Three weeks into flare up.6mp, colozal, prednisone 15mg.Too many herbal things to mention.In September of 09 I started seeing blood in my FIRM bms.. Nothing different just drops of blood... As the blood became more noticeable even a firm bm smelt like I was very sick... My sister was diagnoised with UC several years before.. So the dr. had no hesitation to sch a colon scope. Came back with UC.. no surprise there because we were told it runs in families.. I was told it was VERY mild.. and only noticeable 2 inches into the rectum... I started with Canasa supositories..(very expensive) after a few weeks on this we switched to Asacol...I never saw blood again.. In May of 2010 I started with D... and feeling very sick.. but really high up... in about 3 days time I could not go to work because I could not make the trip to the bathroom.. He scheduled the next scope.. (mothers dat weekend...joy joy) What I felt was nothing like the time in Sept.. I begged for him to scope both ends.. I felt something was missed.. He said only if he found nothing in the lower scope.. I awoke to be told I was now moderate to sever UC.. And no longer in just the lower colon.. The Asacol had done nothing.. We went to 9 Asacol and Pred.. 40mg.. But only for a couple of months and then started to taper me down by 10mg. every two weeks.. At 20mg. We added the Imuran 75mg. I was down to just one bm at about 7 pm in the evening.. then 3 to 4 more follow up trips to the bathroom before bed.. This worked for me since it did not affect my time at work.. At 10mg.. of pred... I found SCD... Yesterday made my one month.. I am in no way following the steps.. I just do all I can not to eat anything illegal . The almond flour did bring on blood both times I tried it.. So I am staying clear of that... AT THE RISK OF TMI.... As each week passed while on SCD my bms came to only one to two in the evening.. The start was firm and the rest was soft.. each week more and more was firm and less and less was soft... The past few days I have only had one bm a night with no follow up visits.. AND AT LAST.. ....last night was a totally firm bm...!!! Yeah..Right now I focus so much on what I eat I forget doses of meds.. Even with the granny 7 day pill box..lol.. I am not intending to get off my meds this soon... Just had a visit on the 10th of Aug.. and he said for me not to back off of the 9 asacol a day until 6 months from now..The change in my health and bm was just so noticeable with each step ... just no doubt it is making a large difference.. I just struggle with the loss of energy from having loss the rush of the steroids at the same time as the surgars from the way I used to eat........... Just wanted to share..UC sept..2009SCD July 12 2010Asacol, Imuran, Potassium supl, Simvastatin, Freeda SCD B complexTo: BTVC-SCD Sent: Fri, August 13, 2010 12:21:02 PMSubject: RE: Re: discouraged intro results We both just read Prassad’s book which was a huge help to me personally in understanding what my son is dealing with emotionally through this. There were so many things in the author’s life that parallels my DS, and I think it was helpful to him as well in terms of putting into words what he is experiencing. That being said, the meds that he was on in the past (from Oct. ’09 – May ’10) were two rounds of Prednisone, Omeprazole (20 mg), Asacol (800 mg. 3xs daily) and then Imuran (125 mg). With all of that, he received no benefit. His stools never firmed up. He has never had the severe bleeding and horrible pain that Prassad and others have talked about. The only “benefit” he saw was a spike in his weight which was initially a thrill for us all. Of course that changed after tapering off and now he is struggling to hang onto his 123 lbs. His lowest point was 109 lbs. in early Oct. He is adamant about not taking any meds at all and is amazingly determined to make this diet work for himself. I am in awe at his discipline but also don’t want him to be stubborn if the meds would actually assist…that just doesn’t seem to be the case.What always had me stumped was that one of the side effects to both Asacol and Imuran is diarrhea… can anyone please help me to understand WHY drugs that can cause diarrhea are prescribed when diarrhea is a major issue?? So, based on the above, is it really worthwhile to do any meds? Can anyone share a personal story about how long it took before symptoms of healing started to be seen? And what were some of the initial signs of healing? Maybe he is starting to heal but we aren’t looking for the right signs. I know everyone is different but I was wondering if anyone here has had a similar experience and how they have progressed. I am so thankful for the pioneers who have already traveled this path and can offer guidance along the way! Eileen Mother of 19 yo son with UC UC 5 diagnosed at age 4; remission until age 14 SCD almost 3 months no meds Eileen Cawoodemail: parvus@...From: BTVC-SCD [mailto: BTVC-SCD ] On Behalf Of smdsmom2008Sent: Friday, August 13, 2010 9:58 AMTo: BTVC-SCD Subject: Re: discouraged intro results Hi,I noticed he is not on any meds. Are you opposed to all medication? The reason I asked is because many of us use medication and SCD. If you look at some of the stories of people (like Raman Prassad) who are not on meds, you will see that they started SCD on medication and later, when they had no symptoms- chose to stop ( some against doctor's advice)their meds on their own.Since he has symptoms, you may want to consider staying on SCD and adding a medication too. This is just my thought because I don't think Elaine ever suggested diet as a replacement for medication although for some people this seems to have been the course. The diet is supposed to help, but people have used all avenues to feel better.PJ>> OK...today is day 4 of a second round with the intro diet. THe first time was only for 2 days and we were new to this and moved too quickly into all legals. After no improvement, he wanted to do the intro again. He thinks he should stay on the intro but I thought you should only do it for 5 days max?> > Shouldn't there be some small sign of improvement? Below is what he has existed on all week long.> > Breakfast: 2 scrambled eggs with DCCC added last two days,diluted apple cider or grape juice;cheese cake; one morning some chicken from the soup > Lunch: beef patty (salt,pepper, garlic powder;added a small amount of legal mustard and oregano yesterday)chicken soup, cheese cake,apple cider> Dinner: beef patty, chicken soup, cheese cake; last night had broiled salmon> Drinks: he has diluted his apple cider and grape juice with either club soda or Pellagrino water > > Evening snack (at least 1 1/2 hour before bed): some diluted apple cider and cheesecake> > Supplements:> He had been taking Freeda's SCD Multivitamin (1 only at this point)but hasn't taken any for the past two days.> Probiotic: No yogurt; every time he has tried this stools get worse> He tried SCDolphilus at 1/2 capsule for a week but same thing and stopped.> S. Boulardi:had been taking one but bumped up to two for the past two days based on list recommendation.> > Bottom line results: Frequeny has increased to sometimes 6 per day;stools are often watery; very tired on day 3 (took a 1 1/2 nap in the afternoon); very stiff muscles> > Also...very discouraged and frustrated.> Should he continue on the intro and make some changes...but what?> Any suggestions?> > Eileen> Mother of 19 yo son with UC> UC 5 diagnosed at age 4; remission until age 14> SCD almost 3 months> no meds>

[Guest guest]

Thanks for sharing. I am in two weeks and was feeling discouraged and needing to hear from some people who have had some success on SCD.UC - four yearsSCD - two weeksIn September of 09 I started seeing blood in my FIRM bms.. Nothing different just drops of blood... As the blood became more noticeable even a firm bm smelt like I was very sick... My sister was diagnoised with UC several years before.. So the dr. had no hesitation to sch a colon scope. Came back with UC.. no surprise there because we were told it runs in families.. I was told it was VERY mild.. and only noticeable 2 inches into the rectum... I started with Canasa supositories..(very expensive) after a few weeks on this we switched to Asacol...I never saw blood again.. In May of 2010 I started with D... and feeling very sick.. but really high up... in about 3 days time I could not go to work because I could not make the trip to the bathroom.. He scheduled the next scope.. (mothers dat weekend...joy joy) What I felt was nothing like the time in Sept.. I begged for him to scope both ends.. I felt something was missed.. He said only if he found nothing in the lower scope.. I awoke to be told I was now moderate to sever UC.. And no longer in just the lower colon.. The Asacol had done nothing.. We went to 9 Asacol and Pred.. 40mg.. But only for a couple of months and then started to taper me down by 10mg. every two weeks.. At 20mg. We added the Imuran 75mg. I was down to just one bm at about 7 pm in the evening.. then 3 to 4 more follow up trips to the bathroom before bed.. This worked for me since it did not affect my time at work.. At 10mg.. of pred... I found SCD... Yesterday made my one month.. I am in no way following the steps.. I just do all I can not to eat anything illegal . The almond flour did bring on blood both times I tried it.. So I am staying clear of that... AT THE RISK OF TMI.... As each week passed while on SCD my bms came to only one to two in the evening.. The start was firm and the rest was soft.. each week more and more was firm and less and less was soft... The past few days I have only had one bm a night with no follow up visits.. AND AT LAST.. ....last night was a totally firm bm...!!! Yeah..Right now I focus so much on what I eat I forget doses of meds.. Even with the granny 7 day pill box..lol.. I am not intending to get off my meds this soon... Just had a visit on the 10th of Aug.. and he said for me not to back off of the 9 asacol a day until 6 months from now..The change in my health and bm was just so noticeable with each step ... just no doubt it is making a large difference.. I just struggle with the loss of energy from having loss the rush of the steroids at the same time as the surgars from the way I used to eat........... Just wanted to share..UC sept..2009SCD July 12 2010Asacol, Imuran, Potassium supl, Simvastatin, Freeda SCD B complexTo: BTVC-SCD Sent: Fri, August 13, 2010 12:21:02 PMSubject: RE: Re: discouraged intro results We both just read Prassad’s book which was a huge help to me personally in understanding what my son is dealing with emotionally through this. There were so many things in the author’s life that parallels my DS, and I think it was helpful to him as well in terms of putting into words what he is experiencing. That being said, the meds that he was on in the past (from Oct. ’09 – May ’10) were two rounds of Prednisone, Omeprazole (20 mg), Asacol (800 mg. 3xs daily) and then Imuran (125 mg). With all of that, he received no benefit. His stools never firmed up. He has never had the severe bleeding and horrible pain that Prassad and others have talked about. The only “benefit” he saw was a spike in his weight which was initially a thrill for us all. Of course that changed after tapering off and now he is struggling to hang onto his 123 lbs. His lowest point was 109 lbs. in early Oct. He is adamant about not taking any meds at all and is amazingly determined to make this diet work for himself. I am in awe at his discipline but also don’t want him to be stubborn if the meds would actually assist…that just doesn’t seem to be the case.What always had me stumped was that one of the side effects to both Asacol and Imuran is diarrhea… can anyone please help me to understand WHY drugs that can cause diarrhea are prescribed when diarrhea is a major issue?? So, based on the above, is it really worthwhile to do any meds? Can anyone share a personal story about how long it took before symptoms of healing started to be seen? And what were some of the initial signs of healing? Maybe he is starting to heal but we aren’t looking for the right signs. I know everyone is different but I was wondering if anyone here has had a similar experience and how they have progressed. I am so thankful for the pioneers who have already traveled this path and can offer guidance along the way! Eileen Mother of 19 yo son with UC UC 5 diagnosed at age 4; remission until age 14 SCD almost 3 months no meds Eileen Cawoodemail: parvus@...From: BTVC-SCD [mailto: BTVC-SCD ] On Behalf Of smdsmom2008Sent: Friday, August 13, 2010 9:58 AMTo: BTVC-SCD Subject: Re: discouraged intro results Hi,I noticed he is not on any meds. Are you opposed to all medication? The reason I asked is because many of us use medication and SCD. If you look at some of the stories of people (like Raman Prassad) who are not on meds, you will see that they started SCD on medication and later, when they had no symptoms- chose to stop ( some against doctor's advice)their meds on their own.Since he has symptoms, you may want to consider staying on SCD and adding a medication too. This is just my thought because I don't think Elaine ever suggested diet as a replacement for medication although for some people this seems to have been the course. The diet is supposed to help, but people have used all avenues to feel better.PJ>> OK...today is day 4 of a second round with the intro diet. THe first time was only for 2 days and we were new to this and moved too quickly into all legals. After no improvement, he wanted to do the intro again. He thinks he should stay on the intro but I thought you should only do it for 5 days max?> > Shouldn't there be some small sign of improvement? Below is what he has existed on all week long.> > Breakfast: 2 scrambled eggs with DCCC added last two days,diluted apple cider or grape juice;cheese cake; one morning some chicken from the soup > Lunch: beef patty (salt,pepper, garlic powder;added a small amount of legal mustard and oregano yesterday)chicken soup, cheese cake,apple cider> Dinner: beef patty, chicken soup, cheese cake; last night had broiled salmon> Drinks: he has diluted his apple cider and grape juice with either club soda or Pellagrino water > > Evening snack (at least 1 1/2 hour before bed): some diluted apple cider and cheesecake> > Supplements:> He had been taking Freeda's SCD Multivitamin (1 only at this point)but hasn't taken any for the past two days.> Probiotic: No yogurt; every time he has tried this stools get worse> He tried SCDolphilus at 1/2 capsule for a week but same thing and stopped.> S. Boulardi:had been taking one but bumped up to two for the past two days based on list recommendation.> > Bottom line results: Frequeny has increased to sometimes 6 per day;stools are often watery; very tired on day 3 (took a 1 1/2 nap in the afternoon); very stiff muscles> > Also...very discouraged and frustrated.> Should he continue on the intro and make some changes...but what?> Any suggestions?> > Eileen> Mother of 19 yo son with UC> UC 5 diagnosed at age 4; remission until age 14> SCD almost 3 months> no meds>

[Guest guest]

.. Hang in there.. When I saw the blood I did not know if it was the almond flour or the idea that I had just taken my last 10 mg of pred... It was so discouraging.. I cried and so did my sister.. She is the one who suggested that I read BTVC... I think the only thing good going for me is that I was diagnosed less then one year when I jumped on SCD.. It will take different times for everyone..

To: BTVC-SCD Sent: Sat, August 14, 2010 9:39:08 AMSubject: Re: Re: discouraged intro results

Thanks for sharing. I am in two weeks and was feeling discouraged and needing to hear from some people who have had some success on SCD.

UC - four years

SCD - two weeks

In September of 09 I started seeing blood in my FIRM bms.. Nothing different just drops of blood... As the blood became more noticeable even a firm bm smelt like I was very sick... My sister was diagnoised with UC several years before.. So the dr. had no hesitation to sch a colon scope. Came back with UC.. no surprise there because we were told it runs in families.. I was told it was VERY mild.. and only noticeable 2 inches into the rectum... I started with Canasa supositories..(very expensive) after a few weeks on this we switched to Asacol...I never saw blood again.. In May of 2010 I started with D... and feeling very sick.. but really high up... in about 3 days time I could not go to work because I could not make the trip to the bathroom.. He scheduled the next scope.. (mothers dat weekend...joy joy) What I felt was nothing like the time in Sept.. I begged for him to scope both ends.. I felt something was missed.. He said only

if he found nothing in the lower scope.. I awoke to be told I was now moderate to sever UC.. And no longer in just the lower colon.. The Asacol had done nothing.. We went to 9 Asacol and Pred.. 40mg.. But only for a couple of months and then started to taper me down by 10mg. every two weeks.. At 20mg. We added the Imuran 75mg. I was down to just one bm at about 7 pm in the evening.. then 3 to 4 more follow up trips to the bathroom before bed.. This worked for me since it did not affect my time at work.. At 10mg.. of pred... I found SCD... Yesterday made my one month.. I am in no way following the steps.. I just do all I can not to eat anything illegal . The almond flour did bring on blood both times I tried it.. So I am staying clear of that... AT THE RISK OF TMI.... As each week passed while on SCD my bms came to only one to two in the evening.. The start was firm and the rest was soft.. each week

more and more was firm and less and less was soft... The past few days I have only had one bm a night with no follow up visits.. AND AT LAST.. ....last night was a totally firm bm...!!! Yeah..

Right now I focus so much on what I eat I forget doses of meds.. Even with the granny 7 day pill box..lol.. I am not intending to get off my meds this soon... Just had a visit on the 10th of Aug.. and he said for me not to back off of the 9 asacol a day until 6 months from now..

The change in my health and bm was just so noticeable with each step ... just no doubt it is making a large difference.. I just struggle with the loss of energy from having loss the rush of the steroids at the same time as the surgars from the way I used to eat...........

Just wanted to share..

UC sept..2009

SCD July 12 2010

Asacol, Imuran, Potassium supl, Simvastatin, Freeda SCD B complex

To: BTVC-SCD Sent: Fri, August 13, 2010 12:21:02 PMSubject: RE: Re: discouraged intro results

We both just read Prassad’s book which was a huge help to me personally in understanding what my son is dealing with emotionally through this. There were so many things in the author’s life that parallels my DS, and I think it was helpful to him as well in terms of putting into words what he is experiencing.

That being said, the meds that he was on in the past (from Oct. ’09 – May ’10) were two rounds of Prednisone, Omeprazole (20 mg), Asacol (800 mg. 3xs daily) and then Imuran (125 mg). With all of that, he received no benefit. His stools never firmed up. He has never had the severe bleeding and horrible pain that Prassad and others have talked about. The only “benefit†he saw was a spike in his weight which was initially a thrill for us all. Of course that changed after tapering off and now he is struggling to hang onto his 123 lbs. His lowest point was 109 lbs. in early Oct. He is adamant about not taking any meds at all and is amazingly determined to make this diet work for himself. I am in awe at his discipline but also don’t want him to be stubborn if the meds would actually assist…that just doesn’t seem to be the

case.

What always had me stumped was that one of the side effects to both Asacol and Imuran is diarrhea… can anyone please help me to understand WHY drugs that can cause diarrhea are prescribed when diarrhea is a major issue??

So, based on the above, is it really worthwhile to do any meds?

Can anyone share a personal story about how long it took before symptoms of healing started to be seen? And what were some of the initial signs of healing? Maybe he is starting to heal but we aren’t looking for the right signs. I know everyone is different but I was wondering if anyone here has had a similar experience and how they have progressed.

I am so thankful for the pioneers who have already traveled this path and can offer guidance along the way!

Eileen Mother of 19 yo son with UC UC 5 diagnosed at age 4; remission until age 14 SCD almost 3 months no meds

Eileen Cawood

email: parvus@...

From: BTVC-SCD [mailto: BTVC-SCD ] On Behalf Of smdsmom2008Sent: Friday, August 13, 2010 9:58 AMTo: BTVC-SCD Subject: Re: discouraged intro results

Hi,I noticed he is not on any meds. Are you opposed to all medication? The reason I asked is because many of us use medication and SCD. If you look at some of the stories of people (like Raman Prassad) who are not on meds, you will see that they started SCD on medication and later, when they had no symptoms- chose to stop ( some against doctor's advice)their meds on their own.Since he has symptoms, you may want to consider staying on SCD and adding a medication too. This is just my thought because I don't think Elaine ever suggested diet as a replacement for medication although for some people this seems to have been the course. The diet is supposed to help, but people have used all avenues to feel better.PJ>> OK...today is day 4 of a second round with the intro diet. THe first time was only for 2 days and we were new to this and moved too quickly into all legals. After no improvement, he wanted to do the intro again. He thinks he should stay on the intro but I thought you should only do it for 5 days max?> > Shouldn't there be some small sign of improvement? Below is what he has existed on all week long.> > Breakfast: 2 scrambled eggs with DCCC added last two days,diluted apple cider or grape juice;cheese cake; one morning some chicken from the soup > Lunch: beef patty

(salt,pepper, garlic powder;added a small amount of legal mustard and oregano yesterday)chicken soup, cheese cake,apple cider> Dinner: beef patty, chicken soup, cheese cake; last night had broiled salmon> Drinks: he has diluted his apple cider and grape juice with either club soda or Pellagrino water > > Evening snack (at least 1 1/2 hour before bed): some diluted apple cider and cheesecake> > Supplements:> He had been taking Freeda's SCD Multivitamin (1 only at this point)but hasn't taken any for the past two days.> Probiotic: No yogurt; every time he has tried this stools get worse> He tried SCDolphilus at 1/2 capsule for a week but same thing and stopped.> S. Boulardi:had been taking one but bumped up to two for the past two days based on list

recommendation.> > Bottom line results: Frequeny has increased to sometimes 6 per day;stools are often watery; very tired on day 3 (took a 1 1/2 nap in the afternoon); very stiff muscles> > Also...very discouraged and frustrated.> Should he continue on the intro and make some changes...but what?> Any suggestions?> > Eileen> Mother of 19 yo son with UC> UC 5 diagnosed at age 4; remission until age 14> SCD almost 3 months> no meds>