Re: doctor's reaction to SCD

[Guest guest]

I got ill Jan 2002, dx'd March 2002 at 32.  No kids so no advice there.

 

What if...you just start the diet, don't bring anything illegal into the house.  Show him, if possible, so he knows how to make yogurt and what,how and why you are cooking the way you are so later if he can't do Remicade or if he gets tired of all the medicine, he can pick back up on it. (sorry, long sentence).

 

When I started it was because I was taking 16 Pentasa per day, prednisone then they added Imuran.  I wasn't getting better at all. Although a lot of people say it takes awhile to gain weight on SCD, I started maintaining right away.  I had a learning curve--cooking.  I only cooked certain things and all this was overwhelming. I watched a lot of Foodnetwork and still read recipes all the time (helps to keep an appetite).  If the food is great (which it is) and you show him how while you can, he'll have something to fall back on.  Eventually, he may decide the diet is better/easier so he can have his life back.  That's the end result we all want. 

 

Good luck, he'll come around eventually if he sees he feels better doing it.  The pecanbread.com intro is pretty easy--he won't even know he's on it.  Bake a chicken, keep some perrier and grape juice around for soda.  He's probably sick of it all so remicade sounds like a magical cure.  If nothing else, he'll get nutrition in.

 

Debbie 40 cd

 

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]

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]

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'".??!!?!!! That is so ridiculous!! How could a lifestyle change to a HEALTHY diet POSSIBLY harm your family?? Especially from the standpoint of a doctor, who should CARE about your health. And what's with that last comment? "I don't know about 'no sugar'???? That is so unbelievably ignorant for a doctor to say.Sorry for the rant. I just HAD to say something. These are the types of people that give doctors in general a bad rep. Peace =)Alyssa **16** yo (!)UC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 50 mg 1x per dayPrednisone 40 mg 1x per day

[Guest guest]

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

>

> > 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' " .

>

>

> ??!!?!!! That is so ridiculous!! How could a lifestyle change to a

> HEALTHY diet POSSIBLY harm your family?? Especially from the

> standpoint of a doctor, who should CARE about your health. And what's

> with that last comment? " I don't know about 'no sugar'???? That is so

> unbelievably ignorant for a doctor to say.

>

> Sorry for the rant. I just HAD to say something. These are the types

> of people that give doctors in general a bad rep.

>

> Peace =)

> Alyssa **16** yo (!)

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> Azathioprine 50 mg 1x per day

> Prednisone 40 mg 1x per day

>

[Guest guest]

I feel the same rant. Yes, of course, lots of people do not want to

feel " different " or are not willing to make the effort to be

healthier and feel better, but it's pretty unbelievable to me that when

someone actually DOES (or is about to) go on a healthy diet, that a

doctor would do anything but encourage them. I can sort of

understand mothers and grandmothers who are oppositional because they

feel threatened that you are " rejecting " their cooking, or

won't let them stuff the kids with cookies. But, a doctor? They

deserve a bad rep for these things.

> 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' " .

??!!?!!! That is so ridiculous!! How could a lifestyle change to a HEALTHY diet POSSIBLY harm your family?? Especially from the standpoint of a doctor, who should CARE about your health. And what's with that last comment? " I don't know about 'no sugar'???? That

is so unbelievably ignorant for a doctor to say.

Sorry for the rant. I just HAD to say something. These are the types of people that give doctors in general a bad rep.

[Guest guest]

At 08:16 AM 3/5/2010, you wrote:

This Carol does not have a list

of SCD docs. Perhaps another Carol?

I think she's thinking of Gay B.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund