Update

[Guest guest]

Hi Alyssa,

I'm glad the upper GI showed no problems. I know it is a shock. You have been an

amazing trooper on SCD, especially for someone your age. I hope you feel better

soon. You have learned a lot about nutrition and keeping yourself healthy, and

it will help.

PJ

>

> 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,"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.AmeliaHusband UC 9 years, SCD 20 monthsLDN 3 mgTo: BTVC-SCD Sent: Wed, February 17, 2010 7:44:25 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 yo

UC April 2008, dx Sept 2008

SCD June 2009 (restarted)

[Guest guest]

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.AmeliaHusband UC 9 years, SCD 20 monthsLDN 3 mgTo: BTVC-SCD Sent: Wed, February 17, 2010 7:44:25 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 yo

UC April 2008, dx Sept 2008

SCD June 2009 (restarted)

[Guest guest]

Just a couple of thoughts andnobody else has mentioned it, I don't think but have you mentioned theLDN to your parents again before starting (is it 6MP?) or is thatcompletely off the table? (Is that what you refer to 'rents'--I'mfeeling 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 allnut butters completely? Maybe go to lean cuts of meats, fish, softand 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 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)

[Guest guest]

Just a couple of thoughts andnobody else has mentioned it, I don't think but have you mentioned theLDN to your parents again before starting (is it 6MP?) or is thatcompletely off the table? (Is that what you refer to 'rents'--I'mfeeling 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 allnut butters completely? Maybe go to lean cuts of meats, fish, softand 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 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)

[Guest guest]

Hi Alyssa,

" Good news/bad news " , huh? I'm sorry that your inflammation markers were up and

you didn't get totally good new (but, gee, photogenic intestines--how cool is

that?!).

If it's any consolation, my daughter was on azathioprine for 2 years and had NO

side effects that we could ever tell from it, and we were able to get her off if

eventually....

Hang in there. You're really an inspiration for being so young and having your

act together enough to commit to this diet, rather than having it foisted on

you!

Ellen

12 y/o dd scd for 3.5 years for Crohn's

med-free for 1.5 years

[Guest guest]

Hi Alyssa,

" Good news/bad news " , huh? I'm sorry that your inflammation markers were up and

you didn't get totally good new (but, gee, photogenic intestines--how cool is

that?!).

If it's any consolation, my daughter was on azathioprine for 2 years and had NO

side effects that we could ever tell from it, and we were able to get her off if

eventually....

Hang in there. You're really an inspiration for being so young and having your

act together enough to commit to this diet, rather than having it foisted on

you!

Ellen

12 y/o dd scd for 3.5 years for Crohn's

med-free for 1.5 years

[Guest guest]

(but, gee, photogenic intestines--how cool is that?!).Lol I know, that was the highlight of my day =)If it's any consolation, my daughter was on azathioprine for 2 years and had NO side effects that we could ever tell from it, and we were able to get her off if eventually....That's super consolation, thanks!!! My biggest concern is being able to get off the meds when I've healed enough, and seeing that your daughter has been med free for 1.5 years on the SCD AFTER being on azathioprine...that's really awesome. Hopefully I'll do the same thing! Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)

[Guest guest]

(but, gee, photogenic intestines--how cool is that?!).Lol I know, that was the highlight of my day =)If it's any consolation, my daughter was on azathioprine for 2 years and had NO side effects that we could ever tell from it, and we were able to get her off if eventually....That's super consolation, thanks!!! My biggest concern is being able to get off the meds when I've healed enough, and seeing that your daughter has been med free for 1.5 years on the SCD AFTER being on azathioprine...that's really awesome. Hopefully I'll do the same thing! Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)