update

[Guest guest]

,

It is so good to hear from you! I'm so glad your health is doing well! YEAH!!!!

It is so nice when we can focus on the good stuff that is going on around us-- and our bodies participate fairly!!!!!

Take care, and don't be such a stranger.

Hugs,

Tracie************************************** See what's free at http://www.aol.com.

[Guest guest]

Hey, , glad to hear that things are going well. My baby's about to turn 31; doesn't seem that long ago that he was fixing to graduate h.s. Time flies, whether you're having fun or not!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: UpdateDate: Mon, 02 Jul 2007 23:07:45 -0000

Hi all--It's been ages since I have posted, and I am sorry for that. I havebeen busy and just doing stuff. blah blah blah.........I got to go on my cruise in April. I had a blast. Loved it lots. Wish I could go back again now..... If you all have a chance, Isurely would recommend going on a cruise, its well worth the money.As far as my health, thats been really good lately..... (Knock onwood) lol........My daughter who is 17, is getting ready for her Senior year, and Ihave a feeling its going to be a busy one.... YIKES!!!! Seniorpictures, filling out college applications, filling out financial aidestuff, college visits, etc........ Graduation parties..... OMW......I am surely not ready for my baby to be graduating.....Well I must go for now, but I hope to post more in the future...Again I am sorry its been so long........Take care of you all,Welcome to all the newbies!!!! from Iowa.......

More photos, more messages, more storage—get 2GB with Windows Live Hotmail.

[Guest guest]

I wanted to let ya'll know I consider myself in remission with the Crohn's. I

won't say completely symptom free as I have some effects of shorten bowel

syndrome from the surgery. My life has comepletely changed due to the diet and

surgery. I am a new person.

If I practice mindfulness and don't over indulge I am totally fine.

Sure I have sensitivities and other health issues I am addressing but it's all

very empowering getting to the bottom why I have been so paralyzed with health

issues.

I am going on a road trip tomorrow and am taking snacks with me- dripped yogurt,

lamb/bison jerky along with canned salmon and some tea and dehydrated veggies

that I made.

I am set for meals as my friends are totally cool with my diet (protein + veg

and a key fat)

I also went to a dinner party and a different party. I had some wine and also

some vodka and was completely ok.

It is so nice being back in the land of the living.

I attribute a huge part of my healing to the fact that I do mind/body work..

Releasing and acknowledging years and years of emotional trauma.

I wanted to thank Dr's Haas and Elaine G. I also want to thank the old timers..

specifically the wonderful and amazing Marilyn that I consider nothing short of

an angel in my life. I also want to thank all of you for the constant love,

support and good vibes ya'll give me.. Having my hand held through hell is one

heck of a gift you all provided me with.. for this I am forever grateful.

I wish you all nothing but the best of health and for you guys to find your

recipe on your healing journey to propel you to new levels of well being.

Jodi

[Guest guest]

Hang in there! I hated it when Sanjay started the azathioprine too. Once it took effect, and it was Christmas time, he pretty much ate what he wanted. He found out soon enough, it didn't work that way. As far as we know, he has had no lasting complications and he isn't taking it anymore.Thanks Amelia =) I was sort of expecting that her response wouldn't satisfy you =) I'll email this to my rents and see what they say, and then maybe email my doctor what you said (though not criticizing her so much =) ) I really appreciate your input, especially if this could really help me. Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)

[Guest guest]

Hang in there! I hated it when Sanjay started the azathioprine too. Once it took effect, and it was Christmas time, he pretty much ate what he wanted. He found out soon enough, it didn't work that way. As far as we know, he has had no lasting complications and he isn't taking it anymore.Thanks Amelia =) I was sort of expecting that her response wouldn't satisfy you =) I'll email this to my rents and see what they say, and then maybe email my doctor what you said (though not criticizing her so much =) ) I really appreciate your input, especially if this could really help me. Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)

[Guest guest]

Let me clarify this a bit. There are various approaches to medicine- standard US

practice and the field of alternative medicine. In the US, most licensed

physicians would not consider the field of alternative medicine as an option,

certainly not Duke. Medical practice is tightly regulated.

Some practitioners will embrace an alternative view, such as chiropractors, and

Integrative Medicine physicians.

Traditional physicians do not consider " adrenal fatigue " , or the alternative

approaches to thyroid problems, or diet, or the like.

adrenal insufficiency is a serious illness. I believe former President JFK had

it.

All of us on this board embrace an alternative view to some extent, or we would

not be here. However, in the US at least, it is hard to find one practitioner

that will use both worlds. In some ways this is good. You want the person behind

the colonoscope to be fully licensed, regulated, and trained in traditional

medicine.

Duke is among the finest in the state of NC, the country, and the world for

state of the art medicine. We need this caliber of medicine. We may not be

entirely happy with what it has had to offer us in all aspects, and for that, we

look outside the box. I'm not arguing with your point of view, Amelia. I just

want Alyssa to understand the difference between traditional and alternative,

and why Duke would not be involved in alternative medicine. For traditional

medicine, she is in good hands.

PJ

>

> Alyssa,

>

> " And Amelia, I showed my GI doctor your email that you sent me about

> checking my adrenals, and she said that for adrenal insufficiency,

> usually there is a sodium/potassium inbalance and some other very

> specific indicator that I didn't have. So she didn't think it was an

> issue. She said I could talk to my endocrinologist about it though if

> I really wanted to. "

>

> Yep, that would be the standard response. But I thought I was very careful

not to say adrenal insufficiency. Fatigue and insufficiency are two different

things to a doctor. They always assume we are talking about insufficiency when

we ask about adrenals. To most doctors, you would have to be nearing the death

bed before checking them. You could be just off enough to throw things out of

kilter, but still be within their precious 'normal range' -- your body would be

coping, but not very well. Every time I ask my doctor about my free T3 levels,

she gives me the same kind of response that she would know by these two other

things if I were having problems with T3--which is total bull. Your doctor

would have to have done a 24 hour saliva adrenal test to know. Those could show

normal at one or two points during the day, but out of range at the two other

points (there are four total). That would show you were struggling enough to

affect the other

> hormones. An endocrinologist, unfortunately, usually is no better and most

likely worse.

>

> So, she would rather slap you onto a possibly dangerous drug without even

checking it out; force you into regular blood tests to make sure it isn't

damaging your liver and/or suppressing your immune system too much.

>

> I am so frustrated on your behalf!!!!

>

> BTW, if you want (or your parents think it is worthwhile) you can have those

tests done without your doctor requesting them. This information (and how to

interpret the results) is in the book 'Stop the Thyroid Madness.'

>

> ZRT Laboratories: www.zrtlab.com Click on Consumer, then Saliva. Profile

III (HPIII) will test all the sex hormones plus the four cortisol profiles. The

Adrenal Funtion test is just for your four cortisol times. Vitamin Research

Products www.vrp.com offers test kits. Lastly is Genova Diagnostics www.gdx.net

Look for their Adrenal Cortex Stress Profile for saliva testing.

>

> Hang in there! I hated it when Sanjay started the azathioprine too. Once it

took effect, and it was Christmas time, he pretty much ate what he wanted. He

found out soon enough, it didn't work that way. As far as we know, he has had

no lasting complications and he isn't taking it anymore.

>

> Amelia

> Husband UC 9 years, SCD 20 months

> LDN 3 mg

>

>

>

>

>

> ________________________________

>

> To: BTVC-SCD

> Sent: Wed, February 17, 2010 7:44:25 PM

> Subject: Update

>

>

> I just got home from Duke, and we left the house this morning at 7.

> Ugh. Long day.

>

> I had my small bowel follow through done today, and everything went

> fine. I did get very lightheaded with the fasting, but they let me

> have a few sips of juice after I drank the barium. The radiologist

> said my intestines are very photogenic and that there's no sign of

> inflammation or strictures at all =)

>

> So I guess this means all my issues are still coming from my colon. I

> just had a lot of bloodwork done, and all the inflammation markers

> were up, and I'm anemic again (sigh) and a stool test I also had done

> showed inflammation.

>

> Soooo, today I have to start azathioprine. Or however you spell it.

> I'm totally in shock. But apparently there's no choice =(

>

> And Amelia, I showed my GI doctor your email that you sent me about

> checking my adrenals, and she said that for adrenal insufficiency,

> usually there is a sodium/potassium inbalance and some other very

> specific indicator that I didn't have. So she didn't think it was an

> issue. She said I could talk to my endocrinologist about it though if

> I really wanted to.

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

>

[Guest guest]

Let me clarify this a bit. There are various approaches to medicine- standard US

practice and the field of alternative medicine. In the US, most licensed

physicians would not consider the field of alternative medicine as an option,

certainly not Duke. Medical practice is tightly regulated.

Some practitioners will embrace an alternative view, such as chiropractors, and

Integrative Medicine physicians.

Traditional physicians do not consider " adrenal fatigue " , or the alternative

approaches to thyroid problems, or diet, or the like.

adrenal insufficiency is a serious illness. I believe former President JFK had

it.

All of us on this board embrace an alternative view to some extent, or we would

not be here. However, in the US at least, it is hard to find one practitioner

that will use both worlds. In some ways this is good. You want the person behind

the colonoscope to be fully licensed, regulated, and trained in traditional

medicine.

Duke is among the finest in the state of NC, the country, and the world for

state of the art medicine. We need this caliber of medicine. We may not be

entirely happy with what it has had to offer us in all aspects, and for that, we

look outside the box. I'm not arguing with your point of view, Amelia. I just

want Alyssa to understand the difference between traditional and alternative,

and why Duke would not be involved in alternative medicine. For traditional

medicine, she is in good hands.

PJ

>

> Alyssa,

>

> " And Amelia, I showed my GI doctor your email that you sent me about

> checking my adrenals, and she said that for adrenal insufficiency,

> usually there is a sodium/potassium inbalance and some other very

> specific indicator that I didn't have. So she didn't think it was an

> issue. She said I could talk to my endocrinologist about it though if

> I really wanted to. "

>

> Yep, that would be the standard response. But I thought I was very careful

not to say adrenal insufficiency. Fatigue and insufficiency are two different

things to a doctor. They always assume we are talking about insufficiency when

we ask about adrenals. To most doctors, you would have to be nearing the death

bed before checking them. You could be just off enough to throw things out of

kilter, but still be within their precious 'normal range' -- your body would be

coping, but not very well. Every time I ask my doctor about my free T3 levels,

she gives me the same kind of response that she would know by these two other

things if I were having problems with T3--which is total bull. Your doctor

would have to have done a 24 hour saliva adrenal test to know. Those could show

normal at one or two points during the day, but out of range at the two other

points (there are four total). That would show you were struggling enough to

affect the other

> hormones. An endocrinologist, unfortunately, usually is no better and most

likely worse.

>

> So, she would rather slap you onto a possibly dangerous drug without even

checking it out; force you into regular blood tests to make sure it isn't

damaging your liver and/or suppressing your immune system too much.

>

> I am so frustrated on your behalf!!!!

>

> BTW, if you want (or your parents think it is worthwhile) you can have those

tests done without your doctor requesting them. This information (and how to

interpret the results) is in the book 'Stop the Thyroid Madness.'

>

> ZRT Laboratories: www.zrtlab.com Click on Consumer, then Saliva. Profile

III (HPIII) will test all the sex hormones plus the four cortisol profiles. The

Adrenal Funtion test is just for your four cortisol times. Vitamin Research

Products www.vrp.com offers test kits. Lastly is Genova Diagnostics www.gdx.net

Look for their Adrenal Cortex Stress Profile for saliva testing.

>

> Hang in there! I hated it when Sanjay started the azathioprine too. Once it

took effect, and it was Christmas time, he pretty much ate what he wanted. He

found out soon enough, it didn't work that way. As far as we know, he has had

no lasting complications and he isn't taking it anymore.

>

> Amelia

> Husband UC 9 years, SCD 20 months

> LDN 3 mg

>

>

>

>

>

> ________________________________

>

> To: BTVC-SCD

> Sent: Wed, February 17, 2010 7:44:25 PM

> Subject: Update

>

>

> I just got home from Duke, and we left the house this morning at 7.

> Ugh. Long day.

>

> I had my small bowel follow through done today, and everything went

> fine. I did get very lightheaded with the fasting, but they let me

> have a few sips of juice after I drank the barium. The radiologist

> said my intestines are very photogenic and that there's no sign of

> inflammation or strictures at all =)

>

> So I guess this means all my issues are still coming from my colon. I

> just had a lot of bloodwork done, and all the inflammation markers

> were up, and I'm anemic again (sigh) and a stool test I also had done

> showed inflammation.

>

> Soooo, today I have to start azathioprine. Or however you spell it.

> I'm totally in shock. But apparently there's no choice =(

>

> And Amelia, I showed my GI doctor your email that you sent me about

> checking my adrenals, and she said that for adrenal insufficiency,

> usually there is a sodium/potassium inbalance and some other very

> specific indicator that I didn't have. So she didn't think it was an

> issue. She said I could talk to my endocrinologist about it though if

> I really wanted to.

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

>

[Guest guest]

> Let me clarify this a bit. There are various approaches to medicine- > standard US practice and the field of alternative medicine. In the US, > most licensed physicians would not consider the field of alternative > medicine as an option, certainly not Duke. Medical practice is tightly > regulated.>> Some practitioners will embrace an alternative view, such as > chiropractors, and Integrative Medicine physicians.>> Traditional physicians do not consider "adrenal fatigue", or the > alternative approaches to thyroid problems, or diet, or the like.> adrenal insufficiency is a serious illness. I believe former President > JFK had it.>> All of us on this board embrace an alternative view to some extent, or > we would not be here. However, in the US at least, it is hard to find > one practitioner that will use both worlds. In some ways this is good. > You want the person behind the colonoscope to be fully licensed, > regulated, and trained in traditional medicine.>> Duke is among the finest in the state of NC, the country, and the world > for state of the art medicine. We need this caliber of medicine. We may > not be entirely happy with what it has had to offer us in all aspects, > and for that, we look outside the box. I'm not arguing with your point > of view, Amelia. I just want Alyssa to understand the difference between > traditional and alternative, and why Duke would not be involved in > alternative medicine. For traditional medicine, she is in good hands.>> PJThe reason most mainstream, conventionally trained doctors are the way they are is because almost all medical schools emphasize treating disease with drugs -- and they are are constantly bombarded with gift drugs from pharamceutical reps. Such doctors learn next to nothing about nutrition, about real preventative medicine, about phytobiological treatments (plant-based) or other non-drug approaches to healing. There should be no either/or in terms of alternative and conventional medicine. Would-be doctors should simply be learning that kind of stuff. Period.I just saw, this very day, the results of a study that evaluated dozens of other studies related to saturated fat and heart disease. Result: there's no evidence that saturated fat causes heart disease. Well, no kidding. Many good but unconventional authors, researchers, doctors who have really looked at the evidence before now could have told them that a long time ago, but they weren't listening. The whole low-fat bandwagon has gotten so out of control that a lot of conventional sources insist you shouldn't even eat egg yolks. (But meanwhile they've embraced sugar, and especially grains.) Conventional medicine is first and foremost excellent in a crisis, in accident/emergency situations that require surgery, reattaching limbs, removing organs, etc.. But for successfully treating systemic and chronic illness they simply aren't well equipped. And more patients have to stop assuming they are Iand start asking a whole lot more questions. Doctors aren't God, nor do they have the right to dictate treatment for/of any bodies but their own. I don't care how good a reputation Duke or Mayo Clinic or any other famous clinic or hospital has in conventional medicine. Unless they start changing their approach and hiring a lot more doctors who are trained in how the body uses nutrients (food, vitamins, minerals, amino acids, etc.), the effect of diet on the body, how to prescribe herbs -- and unless medical schools and drug companies and whoever else starts putting a lot more money into more study of those things, I wouldn't put any more trust in them than I would in any no-name clinic or hospital. There are some doctors who specialize in "complementary" medicine, and they're certainly steps in the right direction. Dr. Weil is one of them (though he, too, is on the avoid-saturated-fat-like-the-plague bandwagon). There are others like him, thankfully. (One of them is Dr. Ray Strand, who wrote What Your Doctor Doesn't Know About Nutritional Medicine May Be Killing You. Good book. He's a great bridge between conventional and alternative medical practitioners.)I spent the first 35 years of my life meekly doing everything my doctors told me. I sorely wish I hadn't, and that I had known then what I know now about foods and supplements. I'd be a lot healthier today.n   -- Now available. A fine gift for cat lovers:Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addictionby n Van Tilwww.wordpowerpublishing.com ; signed copies; free shipping in U.S., reduced shipping elsewhere

[Guest guest]

> Let me clarify this a bit. There are various approaches to medicine- > standard US practice and the field of alternative medicine. In the US, > most licensed physicians would not consider the field of alternative > medicine as an option, certainly not Duke. Medical practice is tightly > regulated.>> Some practitioners will embrace an alternative view, such as > chiropractors, and Integrative Medicine physicians.>> Traditional physicians do not consider "adrenal fatigue", or the > alternative approaches to thyroid problems, or diet, or the like.> adrenal insufficiency is a serious illness. I believe former President > JFK had it.>> All of us on this board embrace an alternative view to some extent, or > we would not be here. However, in the US at least, it is hard to find > one practitioner that will use both worlds. In some ways this is good. > You want the person behind the colonoscope to be fully licensed, > regulated, and trained in traditional medicine.>> Duke is among the finest in the state of NC, the country, and the world > for state of the art medicine. We need this caliber of medicine. We may > not be entirely happy with what it has had to offer us in all aspects, > and for that, we look outside the box. I'm not arguing with your point > of view, Amelia. I just want Alyssa to understand the difference between > traditional and alternative, and why Duke would not be involved in > alternative medicine. For traditional medicine, she is in good hands.>> PJThe reason most mainstream, conventionally trained doctors are the way they are is because almost all medical schools emphasize treating disease with drugs -- and they are are constantly bombarded with gift drugs from pharamceutical reps. Such doctors learn next to nothing about nutrition, about real preventative medicine, about phytobiological treatments (plant-based) or other non-drug approaches to healing. There should be no either/or in terms of alternative and conventional medicine. Would-be doctors should simply be learning that kind of stuff. Period.I just saw, this very day, the results of a study that evaluated dozens of other studies related to saturated fat and heart disease. Result: there's no evidence that saturated fat causes heart disease. Well, no kidding. Many good but unconventional authors, researchers, doctors who have really looked at the evidence before now could have told them that a long time ago, but they weren't listening. The whole low-fat bandwagon has gotten so out of control that a lot of conventional sources insist you shouldn't even eat egg yolks. (But meanwhile they've embraced sugar, and especially grains.) Conventional medicine is first and foremost excellent in a crisis, in accident/emergency situations that require surgery, reattaching limbs, removing organs, etc.. But for successfully treating systemic and chronic illness they simply aren't well equipped. And more patients have to stop assuming they are Iand start asking a whole lot more questions. Doctors aren't God, nor do they have the right to dictate treatment for/of any bodies but their own. I don't care how good a reputation Duke or Mayo Clinic or any other famous clinic or hospital has in conventional medicine. Unless they start changing their approach and hiring a lot more doctors who are trained in how the body uses nutrients (food, vitamins, minerals, amino acids, etc.), the effect of diet on the body, how to prescribe herbs -- and unless medical schools and drug companies and whoever else starts putting a lot more money into more study of those things, I wouldn't put any more trust in them than I would in any no-name clinic or hospital. There are some doctors who specialize in "complementary" medicine, and they're certainly steps in the right direction. Dr. Weil is one of them (though he, too, is on the avoid-saturated-fat-like-the-plague bandwagon). There are others like him, thankfully. (One of them is Dr. Ray Strand, who wrote What Your Doctor Doesn't Know About Nutritional Medicine May Be Killing You. Good book. He's a great bridge between conventional and alternative medical practitioners.)I spent the first 35 years of my life meekly doing everything my doctors told me. I sorely wish I hadn't, and that I had known then what I know now about foods and supplements. I'd be a lot healthier today.n   -- Now available. A fine gift for cat lovers:Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addictionby n Van Tilwww.wordpowerpublishing.com ; signed copies; free shipping in U.S., reduced shipping elsewhere

[Guest guest]

I'm sorry to hear that. I hope you feel better soon. You're in my thoughts.

To: BTVC-SCD Sent: Wed, February 17, 2010 2:44:25 PMSubject: Update

I just got home from Duke, and we left the house this morning at 7. Ugh. Long day.I had my small bowel follow through done today, and everything went fine. I did get very lightheaded with the fasting, but they let me have a few sips of juice after I drank the barium. The radiologist said my intestines are very photogenic and that there's no sign of inflammation or strictures at all =)So I guess this means all my issues are still coming from my colon. I just had a lot of bloodwork done, and all the inflammation markers were up, and I'm anemic again (sigh) and a stool test I also had done showed inflammation.Soooo, today I have to start azathioprine. Or however you spell it. I'm totally in shock. But apparently there's no choice =(And Amelia, I showed my GI doctor your email that you sent me about checking my adrenals, and she said that for adrenal insufficiency, usually there

is a sodium/potassium inbalance and some other very specific indicator that I didn't have. So she didn't think it was an issue. She said I could talk to my endocrinologist about it though if I really wanted to.Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)

[Guest guest]

I'm sorry to hear that. I hope you feel better soon. You're in my thoughts.

To: BTVC-SCD Sent: Wed, February 17, 2010 2:44:25 PMSubject: Update

I just got home from Duke, and we left the house this morning at 7. Ugh. Long day.I had my small bowel follow through done today, and everything went fine. I did get very lightheaded with the fasting, but they let me have a few sips of juice after I drank the barium. The radiologist said my intestines are very photogenic and that there's no sign of inflammation or strictures at all =)So I guess this means all my issues are still coming from my colon. I just had a lot of bloodwork done, and all the inflammation markers were up, and I'm anemic again (sigh) and a stool test I also had done showed inflammation.Soooo, today I have to start azathioprine. Or however you spell it. I'm totally in shock. But apparently there's no choice =(And Amelia, I showed my GI doctor your email that you sent me about checking my adrenals, and she said that for adrenal insufficiency, usually there

is a sodium/potassium inbalance and some other very specific indicator that I didn't have. So she didn't think it was an issue. She said I could talk to my endocrinologist about it though if I really wanted to.Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)

[Guest guest]

I'm sorry you aren't doing better. Just a couple of thoughts and

nobody else has mentioned it, I don't think but have you mentioned the

LDN to your parents again before starting (is it 6MP?) or is that

completely off the table? (Is that what you refer to 'rents'--I'm

feeling old ;-).

And (I'm just throwing this out there), have you thought of making the

'iron' smoothies and straining all the fiber out and eliminating all

nut butters completely? Maybe go to lean cuts of meats, fish, soft

and tender foods, some liquids.

From reading your posts, you've probably done all that and then some.

Just thought I'd mention it.

And PJ is right, you are definitely in the best place for doctors,

hospitals, etc.

Debbie 40 houston cd

> I'm sorry to hear that.  I hope you feel better soon.  You're in

> my thoughts.

>

>

>

>

> ________________________________

>

> To: BTVC-SCD

> Sent: Wed, February 17, 2010 2:44:25 PM

> Subject: Update

>

>

> I just got home from Duke, and we left the house this morning at 7.

> Ugh. Long day.

>

> I had my small bowel follow through done today, and everything went

> fine. I did get very lightheaded with the fasting, but they let me

> have a few sips of juice after I drank the barium. The radiologist

> said my intestines are very photogenic and that there's no sign of

> inflammation or strictures at all =)

>

> So I guess this means all my issues are still coming from my colon. I

> just had a lot of bloodwork done, and all the inflammation markers

> were up, and I'm anemic again (sigh) and a stool test I also had done

> showed inflammation.

>

> Soooo, today I have to start azathioprine. Or however you spell it.

> I'm totally in shock. But apparently there's no choice =(

>

> And Amelia, I showed my GI doctor your email that you sent me about

> checking my adrenals, and she said that for adrenal insufficiency,

> usually there is a sodium/potassium inbalance and some other very

> specific indicator that I didn't have. So she didn't think it was an

> issue. She said I could talk to my endocrinologist about it though if

> I really wanted to.

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

>

>

>

>

>

>

[Guest guest]

I'm sorry you aren't doing better. Just a couple of thoughts and

nobody else has mentioned it, I don't think but have you mentioned the

LDN to your parents again before starting (is it 6MP?) or is that

completely off the table? (Is that what you refer to 'rents'--I'm

feeling old ;-).

And (I'm just throwing this out there), have you thought of making the

'iron' smoothies and straining all the fiber out and eliminating all

nut butters completely? Maybe go to lean cuts of meats, fish, soft

and tender foods, some liquids.

From reading your posts, you've probably done all that and then some.

Just thought I'd mention it.

And PJ is right, you are definitely in the best place for doctors,

hospitals, etc.

Debbie 40 houston cd

> I'm sorry to hear that.  I hope you feel better soon.  You're in

> my thoughts.

>

>

>

>

> ________________________________

>

> To: BTVC-SCD

> Sent: Wed, February 17, 2010 2:44:25 PM

> Subject: Update

>

>

> I just got home from Duke, and we left the house this morning at 7.

> Ugh. Long day.

>

> I had my small bowel follow through done today, and everything went

> fine. I did get very lightheaded with the fasting, but they let me

> have a few sips of juice after I drank the barium. The radiologist

> said my intestines are very photogenic and that there's no sign of

> inflammation or strictures at all =)

>

> So I guess this means all my issues are still coming from my colon. I

> just had a lot of bloodwork done, and all the inflammation markers

> were up, and I'm anemic again (sigh) and a stool test I also had done

> showed inflammation.

>

> Soooo, today I have to start azathioprine. Or however you spell it.

> I'm totally in shock. But apparently there's no choice =(

>

> And Amelia, I showed my GI doctor your email that you sent me about

> checking my adrenals, and she said that for adrenal insufficiency,

> usually there is a sodium/potassium inbalance and some other very

> specific indicator that I didn't have. So she didn't think it was an

> issue. She said I could talk to my endocrinologist about it though if

> I really wanted to.

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

>

>

>

>

>

>

[Guest guest]

Alyssa, you amaze me! :)

Dawn

>

> > Just a couple of thoughts and

> > nobody else has mentioned it, I don't think but have you mentioned the

> > LDN to your parents again before starting (is it 6MP?) or is that

> > completely off the table? (Is that what you refer to 'rents'--I'm

> > feeling old ;-).

>

> Lol yeah, I was feeling lazy with my typing =) Yeah, it's pretty much

> off the table unless we find a doctor willing to prescribe it,

> unfortunately. They might be willing to try it without an rx if I was

> terribly sick and none of the meds were working. Or not. Who knows.

> It's really such a bummer it's not more widely prescribed, because

> what I would give to be on that instead of azathioprine!! ( I think I

> spelled it right that time =) )

>

> >

> > And (I'm just throwing this out there), have you thought of making the

> > 'iron' smoothies and straining all the fiber out and eliminating all

> > nut butters completely? Maybe go to lean cuts of meats, fish, soft

> > and tender foods, some liquids.

>

>

> Sort of. A while ago when I was flared up, I went for a few days

> without smoothies and didn't notice any difference, so I added them

> back. Same with nut butters. Although I limit myself to about a tbsp

> of pecan butter per day. I would just not eat it, but with school, its

> much less awkward to eat a pecan butter-souffle bread roll up during

> class than a thermos of steaming garlic chicken or something of the

> sort =)

>

> I really do appreciate your suggestions though. All of you. I think I

> would be pretty whacked out emotionally (or more so than I already am

> =) ) if I didn't have this group!

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

>

[Guest guest]

Alyssa, you amaze me! :)

Dawn

>

> > Just a couple of thoughts and

> > nobody else has mentioned it, I don't think but have you mentioned the

> > LDN to your parents again before starting (is it 6MP?) or is that

> > completely off the table? (Is that what you refer to 'rents'--I'm

> > feeling old ;-).

>

> Lol yeah, I was feeling lazy with my typing =) Yeah, it's pretty much

> off the table unless we find a doctor willing to prescribe it,

> unfortunately. They might be willing to try it without an rx if I was

> terribly sick and none of the meds were working. Or not. Who knows.

> It's really such a bummer it's not more widely prescribed, because

> what I would give to be on that instead of azathioprine!! ( I think I

> spelled it right that time =) )

>

> >

> > And (I'm just throwing this out there), have you thought of making the

> > 'iron' smoothies and straining all the fiber out and eliminating all

> > nut butters completely? Maybe go to lean cuts of meats, fish, soft

> > and tender foods, some liquids.

>

>

> Sort of. A while ago when I was flared up, I went for a few days

> without smoothies and didn't notice any difference, so I added them

> back. Same with nut butters. Although I limit myself to about a tbsp

> of pecan butter per day. I would just not eat it, but with school, its

> much less awkward to eat a pecan butter-souffle bread roll up during

> class than a thermos of steaming garlic chicken or something of the

> sort =)

>

> I really do appreciate your suggestions though. All of you. I think I

> would be pretty whacked out emotionally (or more so than I already am

> =) ) if I didn't have this group!

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

>

[Guest guest]

In what way is the sodium/potassium unbalanced? Which one is higher/lower then

it should be with adrenal insufficiency?

Also Alyssa, did you doc mention using any non-big-gun meds, like Lialda,

Sulfasalzine, or Rowasa?

Holly

Crohn's

SCD 12/01/08

>

> And Amelia, I showed my GI doctor your email that you sent me about

> checking my adrenals, and she said that for adrenal insufficiency,

> usually there is a sodium/potassium inbalance and some other very

> specific indicator that I didn't have. So she didn't think it was an

> issue. She said I could talk to my endocrinologist about it though if

> I really wanted to.

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

>

[Guest guest]

In what way is the sodium/potassium unbalanced? Which one is higher/lower then

it should be with adrenal insufficiency?

Also Alyssa, did you doc mention using any non-big-gun meds, like Lialda,

Sulfasalzine, or Rowasa?

Holly

Crohn's

SCD 12/01/08

>

> And Amelia, I showed my GI doctor your email that you sent me about

> checking my adrenals, and she said that for adrenal insufficiency,

> usually there is a sodium/potassium inbalance and some other very

> specific indicator that I didn't have. So she didn't think it was an

> issue. She said I could talk to my endocrinologist about it though if

> I really wanted to.

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

>

[Guest guest]

In what way is the sodium/potassium unbalanced? Which one is higher/lower then it should be with adrenal insufficiency?I'm not sure, she didn't really specify. Generally when I go to doctors, they treat me like a kid since I'm still technically in pediatrics, and I don't get too many in-depth explanations unless I really dig for them. Instead I get asked if I need to go 'pee-pee' or if I'm still having 'loose poops.' =)Also Alyssa, did you doc mention using any non-big-gun meds, like Lialda, Sulfasalzine, or Rowasa? I asked her about that. She said that when inflammation goes on for so long uncontrolled it can be much harder to bring under control, and that she didn't think those would be strong enough for me. Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)

[Guest guest]

In what way is the sodium/potassium unbalanced? Which one is higher/lower then it should be with adrenal insufficiency?I'm not sure, she didn't really specify. Generally when I go to doctors, they treat me like a kid since I'm still technically in pediatrics, and I don't get too many in-depth explanations unless I really dig for them. Instead I get asked if I need to go 'pee-pee' or if I'm still having 'loose poops.' =)Also Alyssa, did you doc mention using any non-big-gun meds, like Lialda, Sulfasalzine, or Rowasa? I asked her about that. She said that when inflammation goes on for so long uncontrolled it can be much harder to bring under control, and that she didn't think those would be strong enough for me. Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)

[Guest guest]

You can read an in depth explanation about this sodium/potassium balance in Dr. 's book on Adrenal Fatigue. There's a hormone produced by the adrenals that is constantly working to keep this delicate balance. He recommends drinking salted water to help. People with adrenal fatigue have a problem with their internal water balance and drinking the salted water, especially when feeling fatigued, helps. I've read and re-read this chapter and have found that drinking the salted water does something. My body craves it. Anyway, this may be going off-topic. If you are curious about more details, send me an email and I'd be happy to share more info.

Darlene

To: BTVC-SCD Sent: Thu, February 18, 2010 1:29:44 PMSubject: Re: Re: Update

In what way is the sodium/potassium unbalanced? Which one is higher/lower then it should be with adrenal insufficiency?

I'm not sure, she didn't really specify. Generally when I go to doctors, they treat me like a kid since I'm still technically in pediatrics, and I don't get too many in-depth explanations unless I really dig for them. Instead I get asked if I need to go 'pee-pee' or if I'm still having 'loose poops.' =)

Also Alyssa, did you doc mention using any non-big-gun meds, like Lialda, Sulfasalzine, or Rowasa?

I asked her about that. She said that when inflammation goes on for so long uncontrolled it can be much harder to bring under control, and that she didn't think those would be strong enough for me.

Peace =)

Alyssa 15 yo

UC April 2008, dx Sept 2008

SCD June 2009 (restarted)

Looking for the perfect gift? Give the gift of Flickr!

[Guest guest]

You can read an in depth explanation about this sodium/potassium balance in Dr. 's book on Adrenal Fatigue. There's a hormone produced by the adrenals that is constantly working to keep this delicate balance. He recommends drinking salted water to help. People with adrenal fatigue have a problem with their internal water balance and drinking the salted water, especially when feeling fatigued, helps. I've read and re-read this chapter and have found that drinking the salted water does something. My body craves it. Anyway, this may be going off-topic. If you are curious about more details, send me an email and I'd be happy to share more info.

Darlene

To: BTVC-SCD Sent: Thu, February 18, 2010 1:29:44 PMSubject: Re: Re: Update

In what way is the sodium/potassium unbalanced? Which one is higher/lower then it should be with adrenal insufficiency?

I'm not sure, she didn't really specify. Generally when I go to doctors, they treat me like a kid since I'm still technically in pediatrics, and I don't get too many in-depth explanations unless I really dig for them. Instead I get asked if I need to go 'pee-pee' or if I'm still having 'loose poops.' =)

Also Alyssa, did you doc mention using any non-big-gun meds, like Lialda, Sulfasalzine, or Rowasa?

I asked her about that. She said that when inflammation goes on for so long uncontrolled it can be much harder to bring under control, and that she didn't think those would be strong enough for me.

Peace =)

Alyssa 15 yo

UC April 2008, dx Sept 2008

SCD June 2009 (restarted)

Looking for the perfect gift? Give the gift of Flickr!

[Guest guest]

I asked my kids if they needed to use the " potty " . By the time they were in

college they had had enough. " MOM, it's a bathroom "

As a mom, it will always be a " potty " to me and the pee pee and poops.....

PJ

>

> > In what way is the sodium/potassium unbalanced? Which one is higher/

> > lower then it should be with adrenal insufficiency?

>

> I'm not sure, she didn't really specify. Generally when I go to

> doctors, they treat me like a kid since I'm still technically in

> pediatrics, and I don't get too many in-depth explanations unless I

> really dig for them. Instead I get asked if I need to go 'pee-pee' or

> if I'm still having 'loose poops.' =)

>

> > Also Alyssa, did you doc mention using any non-big-gun meds, like

> > Lialda, Sulfasalzine, or Rowasa?

>

> I asked her about that. She said that when inflammation goes on for so

> long uncontrolled it can be much harder to bring under control, and

> that she didn't think those would be strong enough for me.

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

>

[Guest guest]

I asked my kids if they needed to use the " potty " . By the time they were in

college they had had enough. " MOM, it's a bathroom "

As a mom, it will always be a " potty " to me and the pee pee and poops.....

PJ

>

> > In what way is the sodium/potassium unbalanced? Which one is higher/

> > lower then it should be with adrenal insufficiency?

>

> I'm not sure, she didn't really specify. Generally when I go to

> doctors, they treat me like a kid since I'm still technically in

> pediatrics, and I don't get too many in-depth explanations unless I

> really dig for them. Instead I get asked if I need to go 'pee-pee' or

> if I'm still having 'loose poops.' =)

>

> > Also Alyssa, did you doc mention using any non-big-gun meds, like

> > Lialda, Sulfasalzine, or Rowasa?

>

> I asked her about that. She said that when inflammation goes on for so

> long uncontrolled it can be much harder to bring under control, and

> that she didn't think those would be strong enough for me.

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

>