Son's checkup - a bit confused...

[Guest guest]

My 14 year old son has been on SCD for about 3-1/2 months. He's been pretty

good about everything, except that he keeps eating fresh fruit - apples and

oranges mostly. He isn't having any symptoms except bleeding once in a while.

(He has UC.)

He went in for his first follow-up appointment and has lost 4 more pounds. I'm

not sure if this is from the UC or because he's still playing football (his team

is in the state semi-finals!) and has PE and burns a huge amount of calories.

It's hard to find enough calories for him without getting into the more advanced

foods. I put butter and coconut oil in everything and make him almond butter

" brownies " by the triple batch.

Anyway, the doctor wants him to try Lialda instead of Asacol because he isn't

taking the Asacol 3 times a day like he's supposed to. And, he had him do some

lab work to see if he can handle 6MP. I don't understand why we need to be

adding medication when he is just about symptom free. Is this normal, or is his

doctor pharmaceutical happy? I don't want him to take the 6MP and he doesn't

want it either. The doctor won't look into LDN and doesn't want to hear about

diet.

We're sticking with the diet - I really think it has helped. I'm also thinking

I should ask our insurance company if we can get a second opinion for treatment.

I don't want my son to keep taking medication for a problem that's getting

better without it. My sister in law is a pediatric nurse and says that I could

get into trouble for not following doctor's orders when it comes to giving my

son medication. Don't my husband and I have any say on how to treat him -

especially when what we're doing seems to be helping?

How do other parents handle this? If it were me, I'd find myself a new doctor

and pretty much do what I thought was best. Actually, that's what I DID do when

my health broke down almost 14 years ago. I'm healthy now, no thanks to the

MD's who would have ruined my health. I want my son to be healthy without a

bunch of medication.

Thanks for reading this far!

Liz

[Guest guest]

> My 14 year old son has been on SCD for about 3-1/2 months. He's

> been pretty good about everything, except that he keeps eating fresh

> fruit - apples and oranges mostly. He isn't having any symptoms

> except bleeding once in a while. (He has UC.)

>

> He went in for his first follow-up appointment and has lost 4 more

> pounds. I'm not sure if this is from the UC or because he's still

> playing football (his team is in the state semi-finals!) and has PE

> and burns a huge amount of calories. It's hard to find enough

> calories for him without getting into the more advanced foods. I

> put butter and coconut oil in everything and make him almond butter

> " brownies " by the triple batch.

>

> Anyway, the doctor wants him to try Lialda instead of Asacol because

> he isn't taking the Asacol 3 times a day like he's supposed to.

> And, he had him do some lab work to see if he can handle 6MP. I

> don't understand why we need to be adding medication when he is just

> about symptom free. Is this normal, or is his doctor pharmaceutical

> happy?

I'm not sure why he wants to add if symptoms are less now than they

were before -

but maybe he thinks he wants to try every option aggressively.

Tinker until it all

goes away, that kind of thing.

> I don't want him to take the 6MP and he doesn't want it either.

> The doctor won't look into LDN and doesn't want to hear about diet.

>

> We're sticking with the diet - I really think it has helped. I'm

> also thinking I should ask our insurance company if we can get a

> second opinion for treatment. I don't want my son to keep taking

> medication for a problem that's getting better without it. My

> sister in law is a pediatric nurse and says that I could get into

> trouble for not following doctor's orders when it comes to giving my

> son medication.

> Don't my husband and I have any say on how to treat him -

> especially when what we're doing seems to be helping?

>

> How do other parents handle this? If it were me, I'd find myself a

> new doctor and pretty much do what I thought was best. Actually,

> that's what I DID do when my health broke down almost 14 years ago.

> I'm healthy now, no thanks to the MD's who would have ruined my

> health. I want my son to be healthy without a bunch of medication.

I agree with you - you should look for a second opinion - find a

doctor in

your area to prescribe the LDN - the odds are that will help him get

better faster

and in a more healthy way than taking 6MP, together with the diet.

(Obviously we

can't be sure that the LDN will help everyone, but many of us have

gotten better

with it much more effectively than with these other pills they give

us, or even the

diet alone.) I can't see why you would want

to do that for him - that just lowers his immune system, instead of

making it more

functional the way LDN does.

I was on 6MP for several years and it did absolutely nothing for me as

far as I could

tell.

I'd probably find out about getting him on sulfasalazine instead of

Lialda or Asacol, though,

in the interim, as it has that compound that helps to keep pathogenic

bacteria populations

diminished.

Elaine's words about it back up my own experience, retrospectively.

It kept me more in

check than colazal did.

BTW, on another matter, it occurred to me you might make a request at

costco to stock

the other brand of tuna fish - the one without any vegetable or soy

broth. Let them know

that it is healthier, or that people can be allergic to the filler

stuff - anyway, it can't hurt.

Mara

[Guest guest]

Liz,

I feel for you as well. When I was diagnosed with " mild " UC last spring, I was

hit with an arsenal of meds that made me feel horrible. I was previously a very

compliant patient that took my doctor's advice- and now I feel like you do, very

wary and mistrustful. I do take sulfasalazine. My own GI refuses to discuss diet

or anything else.

On the other hand, I am an adult, and I don't need to grow and gain like your

son does. I think the approach in children may be more aggressive because they

do need calories and nutrition in a bigger way than we do. Also, he wants your

son as well controlled as possible- for the long run.

I think your MD is focusing on the weight loss here,and the bleeding, not the

other symptoms, because growth is so essential to kids. Lialda is longer acting,

which may help if he is not able to frequently take meds. You can also take

Sulfasalazine twice a day , I believe.

Maybe you can make a deal- switch to Sulfasalazine or Lialda if he insists, and

ask him to watch your son's weight a little longer. Perhaps if you can get some

weight on him, the doctor will be less likely to get more aggressive. It would

be good if the bleeding would stop. Perhaps your son would be willing to stop

the fresh fruit if it means less meds. Stewed apples with honey have a lot more

calories than fresh apples. I know it is hard with a teen.

PJ

>

> > My 14 year old son has been on SCD for about 3-1/2 months. He's

> > been pretty good about everything, except that he keeps eating fresh

> > fruit - apples and oranges mostly. He isn't having any symptoms

> > except bleeding once in a while. (He has UC.)

> >

> > He went in for his first follow-up appointment and has lost 4 more

> > pounds. I'm not sure if this is from the UC or because he's still

> > playing football (his team is in the state semi-finals!) and has PE

> > and burns a huge amount of calories. It's hard to find enough

> > calories for him without getting into the more advanced foods. I

> > put butter and coconut oil in everything and make him almond butter

> > " brownies " by the triple batch.

> >

> > Anyway, the doctor wants him to try Lialda instead of Asacol because

> > he isn't taking the Asacol 3 times a day like he's supposed to.

> > And, he had him do some lab work to see if he can handle 6MP. I

> > don't understand why we need to be adding medication when he is just

> > about symptom free. Is this normal, or is his doctor pharmaceutical

> > happy?

>

> I'm not sure why he wants to add if symptoms are less now than they

> were before -

> but maybe he thinks he wants to try every option aggressively.

> Tinker until it all

> goes away, that kind of thing.

>

> > I don't want him to take the 6MP and he doesn't want it either.

> > The doctor won't look into LDN and doesn't want to hear about diet.

> >

> > We're sticking with the diet - I really think it has helped. I'm

> > also thinking I should ask our insurance company if we can get a

> > second opinion for treatment. I don't want my son to keep taking

> > medication for a problem that's getting better without it. My

> > sister in law is a pediatric nurse and says that I could get into

> > trouble for not following doctor's orders when it comes to giving my

> > son medication.

>

>

>

> > Don't my husband and I have any say on how to treat him -

> > especially when what we're doing seems to be helping?

> >

> > How do other parents handle this? If it were me, I'd find myself a

> > new doctor and pretty much do what I thought was best. Actually,

> > that's what I DID do when my health broke down almost 14 years ago.

> > I'm healthy now, no thanks to the MD's who would have ruined my

> > health. I want my son to be healthy without a bunch of medication.

>

> I agree with you - you should look for a second opinion - find a

> doctor in

> your area to prescribe the LDN - the odds are that will help him get

> better faster

> and in a more healthy way than taking 6MP, together with the diet.

> (Obviously we

> can't be sure that the LDN will help everyone, but many of us have

> gotten better

> with it much more effectively than with these other pills they give

> us, or even the

> diet alone.) I can't see why you would want

> to do that for him - that just lowers his immune system, instead of

> making it more

> functional the way LDN does.

>

> I was on 6MP for several years and it did absolutely nothing for me as

> far as I could

> tell.

>

> I'd probably find out about getting him on sulfasalazine instead of

> Lialda or Asacol, though,

> in the interim, as it has that compound that helps to keep pathogenic

> bacteria populations

> diminished.

>

> Elaine's words about it back up my own experience, retrospectively.

> It kept me more in

> check than colazal did.

>

> BTW, on another matter, it occurred to me you might make a request at

> costco to stock

> the other brand of tuna fish - the one without any vegetable or soy

> broth. Let them know

> that it is healthier, or that people can be allergic to the filler

> stuff - anyway, it can't hurt.

>

> Mara

>

[Guest guest]

My doc switched me to lialda from asacol. Best. Move. Ever. My body responded

so much better than just being on the asacol. I'm interested in getting off

meds completely so LDN, to me, seems like just another drug my body would rely

on. And Sulfasalazine made me very ill. Oh and I was on 6MP for many years. I

never had a side effect from it but I don't think it did anything for me (I

believe I was on it in an attempt to ween me off of prednisone).

Stacey

>

> My 14 year old son has been on SCD for about 3-1/2 months. He's been pretty

good about everything, except that he keeps eating fresh fruit - apples and

oranges mostly. He isn't having any symptoms except bleeding once in a while.

(He has UC.)

>

> He went in for his first follow-up appointment and has lost 4 more pounds. I'm

not sure if this is from the UC or because he's still playing football (his team

is in the state semi-finals!) and has PE and burns a huge amount of calories.

It's hard to find enough calories for him without getting into the more advanced

foods. I put butter and coconut oil in everything and make him almond butter

" brownies " by the triple batch.

>

> Anyway, the doctor wants him to try Lialda instead of Asacol because he isn't

taking the Asacol 3 times a day like he's supposed to. And, he had him do some

lab work to see if he can handle 6MP. I don't understand why we need to be

adding medication when he is just about symptom free. Is this normal, or is his

doctor pharmaceutical happy? I don't want him to take the 6MP and he doesn't

want it either. The doctor won't look into LDN and doesn't want to hear about

diet.

>

> We're sticking with the diet - I really think it has helped. I'm also

thinking I should ask our insurance company if we can get a second opinion for

treatment. I don't want my son to keep taking medication for a problem that's

getting better without it. My sister in law is a pediatric nurse and says that

I could get into trouble for not following doctor's orders when it comes to

giving my son medication. Don't my husband and I have any say on how to treat

him - especially when what we're doing seems to be helping?

>

> How do other parents handle this? If it were me, I'd find myself a new doctor

and pretty much do what I thought was best. Actually, that's what I DID do when

my health broke down almost 14 years ago. I'm healthy now, no thanks to the

MD's who would have ruined my health. I want my son to be healthy without a

bunch of medication.

>

> Thanks for reading this far!

> Liz

>

[Guest guest]

> My doc switched me to lialda from asacol. Best. Move. Ever. My

> body responded so much better than just being on the asacol. I'm

> interested in getting off meds completely so LDN, to me, seems like

> just another drug my body would rely on.

Well you know, Stacey, LDN is effective.

LDN and SCD together has proven more effective to me than over a

decade of taking

sulfasalazine and then colazal and a few years of 6MP, none of which I

can say had any

positive effect for sure. At most they prevented me from getting

worse.

Whereas LDN + SCD actually made me better.

Isn't your body relying on the lialda to help it? So I'm not quite

sure of your logic here.

It's okay to take lialda but not to take (the more effective) LDN?

Why?

Mara

[Guest guest]

At 06:49 AM 11/28/2009, you wrote:

It's okay to take lialda but not

to take (the more effective) LDN?

Part of the difficulty in moving to LDN is finding a doctor who will

support it and prescribe it.

Most doctors don't support SCD, but then again, doctors can't (yet)

control what we eat, what food we buy and how we prepare it. So we can do

SCD on our own.

The vast majority of doctors are familiar with Naltrexone only as regards

the 50 mg dose used for the treatment of addiction. When I asked my

primary care physician about LDN, her next question was if I had an

alcohol or other abuse issue. When I explained about low dose Naltrexone,

and why I wanted to try it, despite the fact that the dose is one-tenth

of the FDA-aprroved dose, she was not comfortable with prescribing it

because she knew nothing about it, and there was no literature on it in

any of her databases.

It can be very difficult, moving out of the comfort zone of a

doctor-supported and recommended medication to a non-doctor-supported

medication. Even if we have plenty of anecdotal information that LDN is

more effective than most of what the doctors will prescribe.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

Well, I will probably face a similar issue when I meet my GI doc this week. I

have been on Imuran and Pentasa for 3 years, and after the recent flare-up (I

have UC) he wants me to go on a clinical trial for a new drug.

When I mentioned to him briefly about SCD, he rolled his eyes. I plan to buy a

month or two instead of saying no right away. That may be an easier approach to

convince someone - may be you could try that?

Good luck.

[Guest guest]

>

>

> Well, I will probably face a similar issue when I meet my GI doc

> this week. I have been on Imuran and Pentasa for 3 years, and after

> the recent flare-up (I have UC) he wants me to go on a clinical

> trial for a new drug.

Which drug?

You might want to research LDN - many of us find it, together

with the SCD, the best help for our bodies. It works great

for many people with UC/Crohns. Puts us into remission when other

drugs were useless.

By the sounds of it though, you may have to get another doctor

as well though, if you decide to try LDN. They can help you

with that at this yahoo group for doctors in your area:

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

Mara

[Guest guest]

I received an automatic no on the LDN.  You also have to be careful how you phrase the SCD part.  That screams eating disorder to some.  You may want to start with explaining that by removing certain foods from your diet has relieved symptoms and see how they react.  I have only met one doctor (in the ER) who seemed very interested in hearing about the diet.  Another thing is a new 'drug' called Align that my PCP says all the gastro docs are prescribing.  It's basically off the shelf bifidus I think.  She gave me samples.  I'm afraid to try them though.  It's a probiotic but not cold even though she said the capsules were made to keep the cultures active...the gastro doc didn't mention it but has insisted on putting me on Asacol for some reason.  You really don't know where they are coming from so you have to phrase things differently sometimes.

 

Debbie 40 cd

 

>>> Well, I will probably face a similar issue when I meet my GI doc > this week. I have been on Imuran and Pentasa for 3 years, and after

> the recent flare-up (I have UC) he wants me to go on a clinical > trial for a new drug.Which drug?You might want to research LDN - many of us find it, togetherwith the SCD, the best help for our bodies. It works great

for many people with UC/Crohns. Puts us into remission when otherdrugs were useless.By the sounds of it though, you may have to get another doctoras well though, if you decide to try LDN. They can help you

with that at this yahoo group for doctors in your area:http://health.groups.yahoo.com/group/lowdosenaltrexone/Mara

[Guest guest]

Hi Liz: We are facing the same dilemma. My 18 yo daughter is currently on 6MP.

Was diagnosed June 09 with Crohns. Finally!! off the prednisone mid November.

When I broach the topic of weaning off the 6MP, the doctor and I get into a

light debate of the pros and cons of what she considers a long term treatment.

I've done some research, via the internet and now spoken with two parents of

teenagers who were on 6mp. The drug shut down the immune system entirely of one

girl, and she ended up in the hospital earlier this fall. It seems all these

immune suppressing drugs have a limited window of effectiveness and the trade

off doesn't seem worth the risks. Anyways, I called and scheduled a phone

consultation with a medical group recommended by Rhonda, she posts on here.

Problem is it is in SF and I live in San , but will make it work if they

have same treatment vision as I. I am going for the second opinion. I want

a dr who will support removal of this med 6MP and at least give the LDN a try.

I am so grateful for the UPenn clinical trial. If I win the lottery I will fund

a clinical study of the SCD treatment plan : )

I would appreciate others providing input/experience with 6mp on this board. My

daughter has been symptom free, except the horrible side effects of prednisone

(never again) and then a very bad reaction to the swine flu shot, her sed rate

was down to 9, so I don't understand why continuing the 6MP is the recommended

treatment.

I know meds have their place in treatment, but I believe this is a very

difficult issue as a parent to navigate through the treatment issues with

medical profession who is unwilling to acknowledge the value of scd.

Hope you find solution and share your experience. Don't know what I would do

without this group. I read the posts every day and appreciate all the info

shared.

> >

> > > My 14 year old son has been on SCD for about 3-1/2 months. He's

> > > been pretty good about everything, except that he keeps eating fresh

> > > fruit - apples and oranges mostly. He isn't having any symptoms

> > > except bleeding once in a while. (He has UC.)

> > >

> > > He went in for his first follow-up appointment and has lost 4 more

> > > pounds. I'm not sure if this is from the UC or because he's still

> > > playing football (his team is in the state semi-finals!) and has PE

> > > and burns a huge amount of calories. It's hard to find enough

> > > calories for him without getting into the more advanced foods. I

> > > put butter and coconut oil in everything and make him almond butter

> > > " brownies " by the triple batch.

> > >

> > > Anyway, the doctor wants him to try Lialda instead of Asacol because

> > > he isn't taking the Asacol 3 times a day like he's supposed to.

> > > And, he had him do some lab work to see if he can handle 6MP. I

> > > don't understand why we need to be adding medication when he is just

> > > about symptom free. Is this normal, or is his doctor pharmaceutical

> > > happy?

> >

> > I'm not sure why he wants to add if symptoms are less now than they

> > were before -

> > but maybe he thinks he wants to try every option aggressively.

> > Tinker until it all

> > goes away, that kind of thing.

> >

> > > I don't want him to take the 6MP and he doesn't want it either.

> > > The doctor won't look into LDN and doesn't want to hear about diet.

> > >

> > > We're sticking with the diet - I really think it has helped. I'm

> > > also thinking I should ask our insurance company if we can get a

> > > second opinion for treatment. I don't want my son to keep taking

> > > medication for a problem that's getting better without it. My

> > > sister in law is a pediatric nurse and says that I could get into

> > > trouble for not following doctor's orders when it comes to giving my

> > > son medication.

> >

> >

> >

> > > Don't my husband and I have any say on how to treat him -

> > > especially when what we're doing seems to be helping?

> > >

> > > How do other parents handle this? If it were me, I'd find myself a

> > > new doctor and pretty much do what I thought was best. Actually,

> > > that's what I DID do when my health broke down almost 14 years ago.

> > > I'm healthy now, no thanks to the MD's who would have ruined my

> > > health. I want my son to be healthy without a bunch of medication.

> >

> > I agree with you - you should look for a second opinion - find a

> > doctor in

> > your area to prescribe the LDN - the odds are that will help him get

> > better faster

> > and in a more healthy way than taking 6MP, together with the diet.

> > (Obviously we

> > can't be sure that the LDN will help everyone, but many of us have

> > gotten better

> > with it much more effectively than with these other pills they give

> > us, or even the

> > diet alone.) I can't see why you would want

> > to do that for him - that just lowers his immune system, instead of

> > making it more

> > functional the way LDN does.

> >

> > I was on 6MP for several years and it did absolutely nothing for me as

> > far as I could

> > tell.

> >

> > I'd probably find out about getting him on sulfasalazine instead of

> > Lialda or Asacol, though,

> > in the interim, as it has that compound that helps to keep pathogenic

> > bacteria populations

> > diminished.

> >

> > Elaine's words about it back up my own experience, retrospectively.

> > It kept me more in

> > check than colazal did.

> >

> > BTW, on another matter, it occurred to me you might make a request at

> > costco to stock

> > the other brand of tuna fish - the one without any vegetable or soy

> > broth. Let them know

> > that it is healthier, or that people can be allergic to the filler

> > stuff - anyway, it can't hurt.

> >

> > Mara

> >

>

[Guest guest]

I live in San . I don't know what drug on clinical trial he's planning on

prescribing to me. He is big time into such research. Yeah, I need to see how I

have to put forth the SCD thing.

Regarding 6-MP, I have been on Imuran (like 6-MP) for 3 years now. Soon after UC

diagnosis 3.5 years ago, I was on prednisone. As I stopped it, I started

bleeding again, and the doc immediately put me on Imuran. It worked great for me

for 3 years -- could lead a very normal life.

Till 3 weeks ago, when I had half-a-glass of beer which triggered the flare-up.

Beer (and not wine) has always been the trouble. I have always bleed in response

to beer and I shouldn't have done it. When I told that to my doc, he brushed it

off with his left hand...

Bottom line on Imuran-- I did alright without problems, but I am older... so I

don't know about kids.

[Guest guest]

At 10:47 AM 11/28/2009, you wrote:

Till 3 weeks ago, when I had

half-a-glass of beer which triggered the flare-up. Beer (and not wine)

has always been the trouble. I have always bleed in response to beer and

I shouldn't have done it. When I told that to my doc, he brushed it off

with his left hand...

Beer (to my regret, since I'm rather fond of a good dark beer, but I also

like ambers....) is made from grain. Sadly, the fermentation process

isn't enough to remove all the starch, and thus, the beer can feed the

bad bacteria in our guts.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

I nearly died after taking the 4th dose of 6-MP. LDN,

an immune modulator, is a much better choice, IMO.

Carol

CD 21 yrs SCD 5 yrs B12 shots LDN cream 6

months

From: BTVC-SCD

[mailto:BTVC-SCD ] On Behalf Of healthful09

I would appreciate others providing input/experience with 6mp on this board.

[Guest guest]

I'm glad that, for you, LDN has been proven effective in your overall health.

That's a wonderful, wonderful thing! For me, Lialda did the same thing. After

being unable to ween off of prednisone for 11 years I made the switch and was

finally, finally able to get off that horrible drug. Taking the Lialda also

helped me get off of 6MP and Rinitidine and I only have to take 4 of those pills

in the morning vs. the 16 asacol (plus the others) throughout the day. That, to

me, was a massive improvement to my life so I'm very grateful for it.

As to whether or not my body is relying on it? It probably is right now. But

that doesn't mean that it's not helping or that I'm not healing. For me, the

answer to becoming fully independent of medication doesn't rely on me adding

another med. That feels (to me) like a step backwards. I realize that it's

worked for you, and that's *fantastic* but to me it's still just another drug.

I'm already on Lialda and want to ween off someday so my relying on that drug is

sort of a nonissue for me. I'm already on it (like how my body is already

relying on SCD...if I go off that I'll get sick too). Putting another new drug

in my system is, especially if my health is doing well with the combination of

SCD and Lialda, not something I'm interested in doing. I just felt I would

share my opinion. I know that when I was in high school, going through the

horribleness that was this disease, I would have, at the very least, liked to

have cut down how many pills I was taking. Heehee...and the tradition

continues...I'm still trying to take less meds! ::laughs:: Yep, I can

technically say I did " drugs " in high school. Pity I didn't actually WANT to do

them!

Stacey

>

> > My doc switched me to lialda from asacol. Best. Move. Ever. My

> > body responded so much better than just being on the asacol. I'm

> > interested in getting off meds completely so LDN, to me, seems like

> > just another drug my body would rely on.

>

>

>

> Well you know, Stacey, LDN is effective.

>

> LDN and SCD together has proven more effective to me than over a

> decade of taking

> sulfasalazine and then colazal and a few years of 6MP, none of which I

> can say had any

> positive effect for sure. At most they prevented me from getting

> worse.

>

> Whereas LDN + SCD actually made me better.

>

> Isn't your body relying on the lialda to help it? So I'm not quite

> sure of your logic here.

> It's okay to take lialda but not to take (the more effective) LDN?

>

> Why?

>

> Mara

>

[Guest guest]

My doc also insists diet does not matter. I asked him right out " Does that mean

I can PIG OUT at Taco Bell and it won't matter?

Personally, I will not discuss diet or LDN with my own GI. He would brush me off

in an instance.

Many docs will not consider anything that is not clinically proven. In a way

that is good because you would not want a doctor that tries everything he/she

hears. However, clinical trials are financed by drug companies who hope to

recuperate funds through drug sales. Diet and LDN (which is a cheap drug and has

lost the patent) have no profit potential for a drug company. It makes sense

that they would not want to sink a ton of money with no chance of getting it

back. So there may be other possibilities like SCD and LDN that are very

helpful, but the tests to prove this are not there.

Some of us are fortunate to find understanding docs who are willing to think

beyond medication, but medication has helped a lot of people, and many

traditional doctors are not comfortable with the unknown. It is up to us, as

consumers, to make up our own minds about other treatments. When the LDN trial

is complete- we will have a better chance, and perhaps as more of us speak up to

receptive people about SCD- that will get more accepted too.

PJ

>

>

>

> I live in San . I don't know what drug on clinical trial he's planning

on prescribing to me. He is big time into such research. Yeah, I need to see how

I have to put forth the SCD thing.

>

> Regarding 6-MP, I have been on Imuran (like 6-MP) for 3 years now. Soon after

UC diagnosis 3.5 years ago, I was on prednisone. As I stopped it, I started

bleeding again, and the doc immediately put me on Imuran. It worked great for me

for 3 years -- could lead a very normal life.

>

> Till 3 weeks ago, when I had half-a-glass of beer which triggered the

flare-up. Beer (and not wine) has always been the trouble. I have always bleed

in response to beer and I shouldn't have done it. When I told that to my doc, he

brushed it off with his left hand...

>

> Bottom line on Imuran-- I did alright without problems, but I am older... so I

don't know about kids.

>