Re: doctor's reaction to SCD

[Guest guest]

Sherry, I feel for you, my Husband developed crohn's at 48 yrs old,much older than the norm, and he was put on a number of different meds, including predisolone. I have used pred for many years for a renal condition but his response to it was totally different to mine. What we decided was that take the meds for a while, as small a dose as possible while starting the diet, then reducing the meds until now, he is med free. Our GP was astounded he could get off his meds altogether, and says, while it is working, keep at it. He lost 15kg in 2 weeks and has finally started to look normal again but it has taken a few months to achieve this. Take heart, keep as close to the diet as possible, limit all sugars and complex starches and hopefully his body will begin to heal, I know as a mum to adults that getting them to eat what will help them is not easy, I just don't buy anything not on the diet, so if they eat at home, there is no choice. Good luck

Jena

Husban Crohn's med free

SCD 18 mths.

 

Hi all,I just wanted to share that I had to take my son in to his GI for a follow-up. The 6MP was not helping and we needed to discuss what was going to happen next. I mentioned that we had started the diet this past Sunday, how his symptoms had improved, etc. He did not really respond or ask questions. The only thing he could focus on was my son's weight loss and that he didn't look to happy to be on the diet (which he isn't so much but was doing it) and had the nerve to say, " Who's idea was this yours or your folks? " I went on to say that the diet made sense to me and that people have had success. The fellow who was in the room said, " Well, the people will get on there and give their testimony about how well the diet worked for them then they have a relapse and you never get to read about that. " This was all being said in front of my son who is hanging on to the diet by his fingernails, not really wanting to do it but willing to try. So, it ended with them discussing the fact that has lost quite a bit of weight and they have to do something to get the disease under control. We got the speech about Remicade and my son (who is almost 18) said that he doesn't think he can do the diet and wants to try the R. I just started crying right there in the office. I am so sad and aggravated. I just do not know how I can reason with him. Reason is on my side and this drug is just " management " with zero healing taking place.

I apologize for how long-winded this is. I am just so frustrated by the complete non-supportive attitude that exists in the medical community. They were both looking at me like I was a little nutty for even considering the diet at all.

Please share your thoughts.Sherrymom to 17 CDdx Aug. 09

[Guest guest]

Even if a doctor did not agree with the diet, I wish they would not be so

negative. I know that I can not even mention it to my GI doc. He was quite

outspoken about diet not making a difference. It feels weird not to tell him,

but that is what I have decided to do.

Parenting a teen and almost adult is a challenge! I have kids your age. Thank

goodness my kids have been good kids, but I know there have been times when I

wanted them to do something and they have not wanted to do it. Realistically,

your son has to want to do this. It would be impossible to monitor what he eats

outside of your home. Hopefully in time he will learn more about his body and

what works for him.

PJ

>

> Hi Sherry,

>

> I'm so sorry to hear your son's GI sabotage your efforts. That is so

> typical! None of the 3 GI's I depended on in the past believed that diet had

> anything to do with my CD. Such ignorance astounds me. Unfortunately, your

> experience is too typical and doctors just want to treat symptoms.

>

> I would suggest that google Remicade + side effects. It's a pretty

> scary drug that kills off the immune system. IMO, a better choice of drugs

> is LDN ( www.ldnscience.org ). But, since LDN is such an old drug, out of

> patent, there are no 'free samples' or kickbacks from Big pHARMa so your

> son's GI will probably not be interested in prescribing it.

>

> Meanwhile, is it feasible to find a more open minded GI? I really feel for

> you.

>

> Carol

>

> CD 22 yrs SCD 5 yrs B12 shots LDN (8 mo.)

>

>

>

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

> Of dontlikemeds

>

> I just wanted to share that I had to take my son in to his GI for a

> follow-up. The 6MP was not helping and we needed to discuss what was going

> to happen next. I mentioned that we had started the diet this past Sunday,

> how his symptoms had improved, etc. He did not really respond or ask

> questions. The only thing he could focus on was my son's weight loss and

> that he didn't look to happy to be on the diet (which he isn't so much but

> was doing it) and had the nerve to say, " Who's idea was this yours or your

> folks? " I went on to say that the diet made sense to me and that people have

> had success. The fellow who was in the room said, " Well, the people will get

> on there and give their testimony about how well the diet worked for them

> then they have a relapse and you never get to read about that. " This was all

> being said in front of my son who is hanging on to the diet by his

> fingernails, not really wanting to do it but willing to try. So, it ended

> with them discussing the fact that has lost quite a bit of weight and

> they have to do something to get the disease under control. We got the

> speech about Remicade and my son (who is almost 18) said that he doesn't

> think he can do the diet and wants to try the R. I just started crying right

> there in the office. I am so sad and aggravated. I just do not know how I

> can reason with him. Reason is on my side and this drug is just " management "

> with zero healing taking place.

> I apologize for how long-winded this is. I am just so frustrated by the

> complete non-supportive attitude that exists in the medical community. They

> were both looking at me like I was a little nutty for even considering the

> diet at all.

> Please share your thoughts.

>

> Sherry

> mom to 17 CD

> dx Aug. 09

>

>

>

> ,_._,___

>

[Guest guest]

I am just so frustrated by the complete non-supportive attitude that exists in the medical community. They were both looking at me like I was a little nutty for even considering the diet at all.Please share your thoughts.I'm so sorry to hear this! To be ganged up on like that is horrible, especially when you KNOW you're right! All you can hope is that eventually, if the remicade doesn't work/stops working, your son will decide it IS time to try the diet again. It sounds like it will be nearly impossible to do the diet without him on board. I guess meanwhile you can try making SCD foods often, and see if he even notices they're SCD...Maybe he'll get used to them and not mind eating them after a while! Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 50 mg 1x per dayPrednisone 40 mg 1x per day

[Guest guest]

I agree with Carol. Time to look around for a new doctor.

Is/has your son been on any drugs like colazal or lialda as well

as the 6 MP which wasn't working?

Some people do have amazing results on remicade - so if he starts

he may be one.

> Hi all,

>

> I just wanted to share that I had to take my son in to his GI for a follow-up.

The 6MP was not helping and we needed to discuss what was going to happen next.

I mentioned that we had started the diet this past Sunday, how his symptoms had

improved, etc. He did not really respond or ask questions. The only thing he

could focus on was my son's weight loss and that he didn't look to happy to be

on the diet (which he isn't so much but was doing it) and had the nerve to say,

" Who's idea was this yours or your folks? " I went on to say that the diet made

sense to me and that people have had success. The fellow who was in the room

said, " Well, the people will get on there and give their testimony about how

well the diet worked for them then they have a relapse and you never get to read

about that. " This was all being said in front of my son who is hanging on to the

diet by his fingernails, not really wanting to do it but willing to try. So, it

ended with them discussing the fact that !

> has lost quite a bit of weight and they have to do something to get the

disease under control. We got the speech about Remicade and my son (who is

almost 18) said that he doesn't think he can do the diet and wants to try the R.

I just started crying right there in the office. I am so sad and aggravated. I

just do not know how I can reason with him. Reason is on my side and this drug

is just " management " with zero healing taking place.

> I apologize for how long-winded this is. I am just so frustrated by the

complete non-supportive attitude that exists in the medical community. They were

both looking at me like I was a little nutty for even considering the diet at

all.

> Please share your thoughts.

[Guest guest]

Hi,

I have found the a DO is usually more open minded concerning SCD. I am seeing a

homeopath and a GI doc who is a DO. Although the GI DO is not too familiar

with SCD is he is thrilled with the food choices I present him. He tells me

which ever foods work for me, please proceed. Bottom line, he is open minded

and supportive. I have found the homeopath extremely helpful. he has helped me

over rough patches with SCD legal supplements. If you haven't already, please

go to http://www.breakingtheviciouscycle.info/support/support.htm and click on

the link below SCD Friendly Doctors. See if you can find one in your area. If

not, write an email to one for help.

I have a hard enough time dragging me through this, let alone a teenager. I

believe your son wants to help himself but may be frustrated enough to act out

just like we all do, especially in the begining. I can't tell you how many

times I have said I give up only to realize if I do, whatever I eat will hurt.

So, I haven't given up!

Take Care

Val

SCD 8.5 months

Asacol 8000 mg daily

mom of Penelope

>

> > Hi all,

> >

> > I just wanted to share that I had to take my son in to his GI for a

follow-up. The 6MP was not helping and we needed to discuss what was going to

happen next. I mentioned that we had started the diet this past Sunday, how his

symptoms had improved, etc. He did not really respond or ask questions. The only

thing he could focus on was my son's weight loss and that he didn't look to

happy to be on the diet (which he isn't so much but was doing it) and had the

nerve to say, " Who's idea was this yours or your folks? " I went on to say that

the diet made sense to me and that people have had success. The fellow who was

in the room said, " Well, the people will get on there and give their testimony

about how well the diet worked for them then they have a relapse and you never

get to read about that. " This was all being said in front of my son who is

hanging on to the diet by his fingernails, not really wanting to do it but

willing to try. So, it ended with them discussing the fact that !

> > has lost quite a bit of weight and they have to do something to get the

disease under control. We got the speech about Remicade and my son (who is

almost 18) said that he doesn't think he can do the diet and wants to try the R.

I just started crying right there in the office. I am so sad and aggravated. I

just do not know how I can reason with him. Reason is on my side and this drug

is just " management " with zero healing taking place.

> > I apologize for how long-winded this is. I am just so frustrated by the

complete non-supportive attitude that exists in the medical community. They were

both looking at me like I was a little nutty for even considering the diet at

all.

> > Please share your thoughts.

>

[Guest guest]

Sherry,

I'm so sorry and feel your frustration. Perhaps if you took your son to a doctor who practices functional medicine, he could hear a differing opinion. The doc who put me on this diet was my primary care physician who practices functional medicine. She is an MD and practices in a mainstream AMA type setting. So they are out there but you might have to search for them. In contrast, the 2 gastro docs I've been too think this diet is pure bunk.

What is functional medicine?

http://www.functionalmedicine.org/about/whatis.aspFind a functional medicine doctor.

http://www.functionalmedicine.org/findfmphysician/index.aspClaire

Hanging on by my fingernails to God's toenails.

doctor's reaction to SCD

Hi all,

I just wanted to share that I had to take my son in to his GI for a follow-up. The 6MP was not helping and we needed to discuss what was going to happen next. I mentioned that we had started the diet this past Sunday, how his symptoms had improved, etc. He did not really respond or ask questions. The only thing he could focus on was my son's weight loss and that he didn't look to happy to be on the diet (which he isn't so much but was doing it) and had the nerve to say, "Who's idea was this yours or your folks?" I went on to say that the diet made sense to me and that people have had success. The fellow who was in the room said, "Well, the people will get on there and give their testimony about how well the diet worked for them then they have a relapse and you never get to read about that." This was all being said in front of my son who is hanging on to the diet by his fingernails, not really wanting to do it but willing to try. So, it ended with them disc

ussing the fact that has lost quite a bit of weight and they have to do something to get the disease under control. We got the speech about Remicade and my son (who is almost 18) said that he doesn't think he can do the diet and wants to try the R. I just started crying right there in the office. I am so sad and aggravated. I just do not know how I can reason with him. Reason is on my side and this drug is just "management" with zero healing taking place.

I apologize for how long-winded this is. I am just so frustrated by the complete non-supportive attitude that exists in the medical community. They were both looking at me like I was a little nutty for even considering the diet at all.

Please share your thoughts.

Sherry

mom to 17 CD

dx Aug. 09

[Guest guest]

I wish I could, but in a small town, this is the best we have, and they are very

good. I see that there are more progressive docs in larger cities, but not where

I live.

I have great respect for traditional medicine and understand the position

physicians are in, however, I wish that many of them were more in touch with the

whole of the issue, and more respectful of our feelings.

Whenever I hear of a physician who supports SCD, I get very excited and hopeful

that there will be more of them.

PJ

>

> > Hi all,

> >

> > I just wanted to share that I had to take my son in to his GI for a

follow-up. The 6MP was not helping and we needed to discuss what was going to

happen next. I mentioned that we had started the diet this past Sunday, how his

symptoms had improved, etc. He did not really respond or ask questions. The only

thing he could focus on was my son's weight loss and that he didn't look to

happy to be on the diet (which he isn't so much but was doing it) and had the

nerve to say, " Who's idea was this yours or your folks? " I went on to say that

the diet made sense to me and that people have had success. The fellow who was

in the room said, " Well, the people will get on there and give their testimony

about how well the diet worked for them then they have a relapse and you never

get to read about that. " This was all being said in front of my son who is

hanging on to the diet by his fingernails, not really wanting to do it but

willing to try. So, it ended with them discussing the fact that !

> > has lost quite a bit of weight and they have to do something to get the

disease under control. We got the speech about Remicade and my son (who is

almost 18) said that he doesn't think he can do the diet and wants to try the R.

I just started crying right there in the office. I am so sad and aggravated. I

just do not know how I can reason with him. Reason is on my side and this drug

is just " management " with zero healing taking place.

> > I apologize for how long-winded this is. I am just so frustrated by the

complete non-supportive attitude that exists in the medical community. They were

both looking at me like I was a little nutty for even considering the diet at

all.

> > Please share your thoughts.

>

[Guest guest]

As everyone has already mentioned, I know how discouraging that must have been

for you. My GI was definitely lukewarm at best about me trying this diet. I also

see an integrative GP who is very progressive with diet issues. When I mentioned

that I would be starting this he started off on " oh, that's the caveman diet. " I

tried to explain it to him, but he tuned me out and didn't want to hear about

it. I was shocked and even tried emailing him and his assistant and never heard

anything back. I guess what we are all learning (the hard way!) is that if SCD

works, we need to be empowered to use it and tune everyone else out. We need to

be our own health advocates... you can't rely on the doctors!

-Joanna

SCD 9/2009, Crohn's 1992, 30mg prednisone

[Guest guest]

When I first started the SCD (about 3 and 1/2 years ago) many GI doctors and surgeons who I met were all very skeptical. They said I had a very severe case of Crohn's Disease (several surgeries and hospitalizations) and that I should be on medicine for the rest of my life. However, after watching me progress for over three years in complete remission and 100% drug free, they were stunned.Unfortunately I recently suffered major complications due to a C section last March. Massive scarring and adhesions lead to a 4 hour surgery and a temporary ileostomy. After working so hard to keep my intestines in tip top shape, it was very disheartening to lose small intestine to a non-Crohn's related surgical complication. HOWEVER, the doctors were stunned when they scoped my colon and small intestines and told me that through all of this (ileostomy, reversal, major illness, etc) there is STILL no sign of Crohn's and that, in fact, the inside of my intestines looked unbelievable. His exact words were "when we scoped you it was clear that your not on a typical American diet. It looks like you eat all nuts and berries."The same doctors who were discouraging me from SCD a few years ago are now my biggest cheerleaders and encouraging me "not to change my diet."So don't lose hope. You are right. SCD works. I am sure of it.JillTo: BTVC-SCD From: s.kurtz@...Date: Sun, 28 Feb 2010 04:54:36 +0000Subject: doctor's reaction to SCD

I apologize for how long-winded this is. I am just so frustrated by the complete non-supportive attitude that exists in the medical community. They were both looking at me like I was a little nutty for even considering the diet at all.

Please share your thoughts.

Sherry

mom to 17 CD

dx Aug. 09

Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. Sign up now.

[Guest guest]

Jill,

Your message was very inspiring. I'm so happy for you. It encourages me today on my tenth day of being on SCD, feeling ill, bloated and nauseous! DarleneIntestinal DysbiosisSCD 10 days

To: btvc-scd Sent: Sun, February 28, 2010 5:00:08 PMSubject: RE: doctor's reaction to SCD

When I first started the SCD (about 3 and 1/2 years ago) many GI doctors and surgeons who I met were all very skeptical. They said I had a very severe case of Crohn's Disease (several surgeries and hospitalizations) and that I should be on medicine for the rest of my life. However, after watching me progress for over three years in complete remission and 100% drug free, they were stunned.

Unfortunately I recently suffered major complications due to a C section last March. Massive scarring and adhesions lead to a 4 hour surgery and a temporary ileostomy. After working so hard to keep my intestines in tip top shape, it was very disheartening to lose small intestine to a non-Crohn's related surgical complication.

HOWEVER, the doctors were stunned when they scoped my colon and small intestines and told me that through all of this (ileostomy, reversal, major illness, etc) there is STILL no sign of Crohn's and that, in fact, the inside of my intestines looked unbelievable. His exact words were "when we scoped you it was clear that your not on a typical American diet. It looks like you eat all nuts and berries."

The same doctors who were discouraging me from SCD a few years ago are now my biggest cheerleaders and encouraging me "not to change my diet."

So don't lose hope. You are right. SCD works. I am sure of it.

Jill

To: BTVC-SCD@yahoogroup s.comFrom: s.kurtz (AT) sbcglobal (DOT) netDate: Sun, 28 Feb 2010 04:54:36 +0000Subject: doctor's reaction to SCD

I apologize for how long-winded this is. I am just so frustrated by the complete non-supportive attitude that exists in the medical community. They were both looking at me like I was a little nutty for even considering the diet at all.Please share your thoughts.Sherrymom to 17 CDdx Aug. 09

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[Guest guest]

WOW, your story sounds unbelievable...cant believe you had to go thru all

that...I hope all goes well with your temporary illeostomy removal and that you

completely recover.

I'm amazed by your results on scd and find it so encouraging. did you have any

problems while pregnant? Also, are you fully on the scd or do you still restrict

certain foods? Are you able to eat the more advanced foods such as coconut?

dried fruits? peanut butter?

If so, were you always tolerating them or did you only tolerate them in later

stages of the diet? One more question, did you see results right away and if so

how long did it take till you felt that your body was in remission?

Thanx and sorry for the bombardment of questions...Becky

>

>

> When I first started the SCD (about 3 and 1/2 years ago) many GI doctors and

surgeons who I met were all very skeptical. They said I had a very severe case

of Crohn's Disease (several surgeries and hospitalizations) and that I should be

on medicine for the rest of my life. However, after watching me progress for

over three years in complete remission and 100% drug free, they were stunned.

> Unfortunately I recently suffered major complications due to a C section last

March. Massive scarring and adhesions lead to a 4 hour surgery and a temporary

ileostomy. After working so hard to keep my intestines in tip top shape, it was

very disheartening to lose small intestine to a non-Crohn's related surgical

complication.

> HOWEVER, the doctors were stunned when they scoped my colon and small

intestines and told me that through all of this (ileostomy, reversal, major

illness, etc) there is STILL no sign of Crohn's and that, in fact, the inside of

my intestines looked unbelievable. His exact words were " when we scoped you it

was clear that your not on a typical American diet. It looks like you eat all

nuts and berries. "

> The same doctors who were discouraging me from SCD a few years ago are now my

biggest cheerleaders and encouraging me " not to change my diet. "

> So don't lose hope. You are right. SCD works. I am sure of it.

> Jill

>

> To: BTVC-SCD

> From: s.kurtz@...

> Date: Sun, 28 Feb 2010 04:54:36 +0000

> Subject: doctor's reaction to SCD

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> I apologize for how long-winded this is. I am just so frustrated by the

complete non-supportive attitude that exists in the medical community. They were

both looking at me like I was a little nutty for even considering the diet at

all.

>

> Please share your thoughts.

>

>

>

> Sherry

>

> mom to 17 CD

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> dx Aug. 09

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> _________________________________________________________________

> Your E-mail and More On-the-Go. Get Windows Live Hotmail Free.

> http://clk.atdmt.com/GBL/go/201469229/direct/01/

>

[Guest guest]

The problem with conventional medical doctors is that they have next to no nutritional training in med school. They really don't know much or anything about nutritional or diet therapies. When I was diagnosed with UC back in 2004 my doctor told me that diet had nothing to do with it and that I should eat only soft bland foods - rice, white bread, crackers, etc - and avoid fruits and vegetables as they were too "rough". Basically, it was a direct contradiction to what I later found out really worked - the SCD. I've been symptom free and med free within months of being on the diet.If you haven't already seen it, there is a great movie about healing disease through diet called Food Matters. It does a great job explaining how conventional medical doctors really have no nutritional background or training, and how the medical system is set up to promote pharmaceutical drugs because it's a big business and that's how they make money. Here is a link to it. I highly recommend it. It would really help your son understand what's going on and how the system works.Food Matters Movie >> Hi all,> > I just wanted to share that I had to take my son in to his GI for a follow-up. The 6MP was not helping and we needed to discuss what was going to happen next. I mentioned that we had started the diet this past Sunday, how his symptoms had improved, etc. He did not really respond or ask questions. The only thing he could focus on was my son's weight loss and that he didn't look to happy to be on the diet (which he isn't so much but was doing it) and had the nerve to say, "Who's idea was this yours or your folks?" I went on to say that the diet made sense to me and that people have had success. The fellow who was in the room said, "Well, the people will get on there and give their testimony about how well the diet worked for them then they have a relapse and you never get to read about that." This was all being said in front of my son who is hanging on to the diet by his fingernails, not really wanting to do it but willing to try. So, it ended with them discussing the fact that has lost quite a bit of weight and they have to do something to get the disease under control. We got the speech about Remicade and my son (who is almost 18) said that he doesn't think he can do the diet and wants to try the R. I just started crying right there in the office. I am so sad and aggravated. I just do not know how I can reason with him. Reason is on my side and this drug is just "management" with zero healing taking place. > I apologize for how long-winded this is. I am just so frustrated by the complete non-supportive attitude that exists in the medical community. They were both looking at me like I was a little nutty for even considering the diet at all.> Please share your thoughts.> > Sherry> mom to 17 CD> dx Aug. 09>

[Guest guest]

Sherry,

I'm with you....My doctor said in front of my son, " Don't make it (the diet) a

religion, " and spoke of the harm it could do to our whole family in terms of a

major lifestyle change. He also said he believes " low sugar is good for

everyone, but I don't know about 'no sugar' " . My ten year old quickly picked up

on that one! So, it's Mom vs. The Doctor. What's a little tike to do? At age

10, I am still the greatest thing since sliced SCD bread. (Not so sure what he

will think of me at 17!)

Unfortunately, our doctor is the only ped GI in town. I'm considering going

back to our old doctor who is now 5 hours away. He wouldn't recommend the diet

simply because there are no studies, but he at least would NEVER have bucked me

in front of my child. A lot of it is simply ignorance and lack of training in

nutrition, so I try to not get too " out done " about it. For example, after

explaining that I make my own yogurt, only feed him monosaccaride sugars, etc.,

I said that my son drinks yogurt smoothies everyday. His reply was " those are

loaded with sugar. " So I repeated that I make the smoothies myself, blah, blah,

blah....no response.

After my son's labs started to come back normal, he was looking at his file

scratching his head wondering why the labs were all of a sudden normal. I

reminded him that my son is on the SCD diet. He would not acknowledge the diet

one bit....

O.K. I'm starting to get riled up now thinking about this, so I have to quit.

But, I understand what you're going through. I'm wondering if maybe some

doctors are intimidated by parents like us.....

Next visit, I may ask my child to step out of the room while I talk to him.

I truly believe that my son sticks to the diet in social situations because he

feels better now that he's on it. He still complains from time to time, but

unless he's snowing me, I don't think he cheats when I'm not around. I know

that's got to be harder for you with a 17 year old.... Also, I give my son many

incentives and prizes on a monthly basis. Don't know if this would work for

your 17 year old. You could let him stay out later, link compliance to the diet

to driving priveleges, reward him with equipment for whatever hobbies he has,

gym membership, etc. I also made a deal with my son that it would only be for a

year (since he was already visibly healed by the Remicade) and tried to show him

that a year of his life on SCD in the big picture is not really that much. I

should have said two years. We'll see what happens. He may want to just stay on

it by that time. I know for certain that at least at home, we will never go

back to eating the way we used to eat.

Michele

10 year old son, Crohn's

Remicade 2 years, SCD 8 mos.

> >

> > Hi all,

> >

> > I just wanted to share that I had to take my son in to his GI for a

> follow-up. The 6MP was not helping and we needed to discuss what was

> going to happen next. I mentioned that we had started the diet this past

> Sunday, how his symptoms had improved, etc. He did not really respond or

> ask questions. The only thing he could focus on was my son's weight loss

> and that he didn't look to happy to be on the diet (which he isn't so

> much but was doing it) and had the nerve to say, " Who's idea was this

> yours or your folks? " I went on to say that the diet made sense to me

> and that people have had success. The fellow who was in the room said,

> " Well, the people will get on there and give their testimony about how

> well the diet worked for them then they have a relapse and you never get

> to read about that. " This was all being said in front of my son who is

> hanging on to the diet by his fingernails, not really wanting to do it

> but willing to try. So, it ended with them discussing the fact that

> has lost quite a bit of weight and they have to do something to get the

> disease under control. We got the speech about Remicade and my son (who

> is almost 18) said that he doesn't think he can do the diet and wants to

> try the R. I just started crying right there in the office. I am so sad

> and aggravated. I just do not know how I can reason with him. Reason is

> on my side and this drug is just " management " with zero healing taking

> place.

> > I apologize for how long-winded this is. I am just so frustrated by

> the complete non-supportive attitude that exists in the medical

> community. They were both looking at me like I was a little nutty for

> even considering the diet at all.

> > Please share your thoughts.

> >

> > Sherry

> > mom to 17 CD

> > dx Aug. 09

> >

>

[Guest guest]

HI

Thank you all for your thoughts and sharing your experiences. It's pretty

frustrating, to say the least, that some of these docs. can't accept that we are

willing to do whatever it takes to help our children. The fact that they don't

put much stock in the effects of good/bad nutrition explains a lot!

I'm off topic (again), but I wanted to let you know that we have decided to

allow our son to make this decision about the R. We felt that it was an

important step toward owning the disease and feeling as if he had some control

over how it was going to be handled. He is not open to the diet at this time and

is pretty desperate for relief from a year of symptoms.

Thank you all for your patience and help. I may hang around and read the posts

to stay up on things (just in case). :-)

God Bless you all and good health to you.

Sherry

> > >

> > > Hi all,

> > >

> > > I just wanted to share that I had to take my son in to his GI for a

> > follow-up. The 6MP was not helping and we needed to discuss what was

> > going to happen next. I mentioned that we had started the diet this past

> > Sunday, how his symptoms had improved, etc. He did not really respond or

> > ask questions. The only thing he could focus on was my son's weight loss

> > and that he didn't look to happy to be on the diet (which he isn't so

> > much but was doing it) and had the nerve to say, " Who's idea was this

> > yours or your folks? " I went on to say that the diet made sense to me

> > and that people have had success. The fellow who was in the room said,

> > " Well, the people will get on there and give their testimony about how

> > well the diet worked for them then they have a relapse and you never get

> > to read about that. " This was all being said in front of my son who is

> > hanging on to the diet by his fingernails, not really wanting to do it

> > but willing to try. So, it ended with them discussing the fact that

> > has lost quite a bit of weight and they have to do something to get the

> > disease under control. We got the speech about Remicade and my son (who

> > is almost 18) said that he doesn't think he can do the diet and wants to

> > try the R. I just started crying right there in the office. I am so sad

> > and aggravated. I just do not know how I can reason with him. Reason is

> > on my side and this drug is just " management " with zero healing taking

> > place.

> > > I apologize for how long-winded this is. I am just so frustrated by

> > the complete non-supportive attitude that exists in the medical

> > community. They were both looking at me like I was a little nutty for

> > even considering the diet at all.

> > > Please share your thoughts.

> > >

> > > Sherry

> > > mom to 17 CD

> > > dx Aug. 09

> > >

> >

>

[Guest guest]

Sherry,

I'm so sorry to read of your troubles with your doctor. Is there another GI that

you could try? You deserve to be able to talk about this with a doctor who

respects your opinions. On the other hand, my son probably would not have been

as accepting of the diet if we had not already tried remicade, and things didn't

change. So maybe your son will be more willing if he tries it for awhile and

sees that western medicine doesn't solve everything. It burns me up though, the

way that doctor treated you. Mine was unsure that SCD was going to work for us

because it's so difficult for a kid to stick with a diet, but she was willing to

work with us. Of course, this was after she was seeing that all her methods

(including remicade) were not helping much.

I believe Carol has a list of doctors who are more open to SCD from all over the

country. Tell her what city, and she could check. It might be a nutritional

doctor rather than a GI, but that would be a start.

Cathy

15 yo son w uc

scd 2007

[Guest guest]

Very well put!

DarleneIntestinal DysbiosisSCD 2 weeks

To: BTVC-SCD Sent: Thu, March 4, 2010 5:27:03 PMSubject: Re: doctor's reaction to SCD

I think the idea is to lead a "normal life", and a rigid diet makes that difficult. They are thinking about birthday parties and movies with popcorn like everyone else, forgetting that feeling sick is not a "normal life" either. Sure it is tough to be a kid and not eat like other kids, but it's tougher to feel bad. Yes, we all wish we could eat anything we want, but we can't. However, it's SCD that helps me live as normal a life as possible. I just recently took a trip. I had to cook for days to get ready and stay in a hotel with a kitchen. Except for this, it was perfectly "normal" in every way. Compared to a year ago when I felt so terrible there was nothing "normal" about it. Better to feel well and not have a "normal" SAD, than to eat anything and feel bad.PJ Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use

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[Guest guest]

This Carol does not have a list of SCD docs. Perhaps another

Carol?

You might be confusing a list of LDN prescribing docs that

Crystal keeps.

Carol

CD 22 yrs SCD 5 yrs

From:

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

I believe Carol has a list of doctors who are

more open to SCD from all over the country. Tell her what city, and she could

check. It might be a nutritional doctor rather than a GI, but that would be a

start.

[Guest guest]

Oh that's right. I do think there was someone who had a list of doctors who were

aware of SCD. I may have a note of who had this list in my files. If Sherry or

anyone wants it, I'll check.

Cathy

15 yo son w uc

scd 2007

>

> This Carol does not have a list of SCD docs. Perhaps another Carol?

>

> You might be confusing a list of LDN prescribing docs that Crystal keeps.