Re: Small Bowel Follow Through

February 8, 2010

Hi Alyssa,

I know this is disappointing. You can still do SCD and meds together, and still

feel better. At least she was very nice, which is a good thing.

Keep us posted on your results and what meds she recommends.

Hope all goes well,

PJ

>

> I just had an appointment w/ a new GI doctor at duke, and on the up

> side, she was very nice. On the down side, my bloodwork showed

> inflammation, she's 'very concerned about me,' and I have to get a

> small bowel follow through. And go on meds. =( I know it's just

> temporary, but I honestly feel like the SCD hasn't helped me at all. I

> mean, things probably would've/could've been a lot worse without it.

> And I'm definitely staying on it!!! I just am bummed.

>

> Anyways! What did/do you guys mix the barium with when you had/have

> this done?? SHould I just bring in a legal juice to mix it with? Is

> there a flavor/type that would taste best with the barium? I've heard

> it's gross...

>

> Any tips would be appreciated =)

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> Chinese Herbs (not legal but helping!)

>

February 8, 2010

> I just had an appointment w/ a new GI doctor at duke, and on the up

> side, she was very nice. On the down side, my bloodwork showed

> inflammation,

Well, you know you had this - what with the ups and downs

you've been having lately.

So while it is depressing to have it confirmed officially, you already

knew it.

> she's 'very concerned about me,' and I have to get a

> small bowel follow through. And go on meds. =(

I thought you were on the rowasa enemas already?

> I know it's just

> temporary, but I honestly feel like the SCD hasn't helped me at all. I

> mean, things probably would've/could've been a lot worse without it.

> And I'm definitely staying on it!!! I just am bummed.

>

> Anyways! What did/do you guys mix the barium with when you had/have

> this done?? SHould I just bring in a legal juice to mix it with? Is

> there a flavor/type that would taste best with the barium? I've heard

> it's gross...

>

> Any tips would be appreciated =)

I had one eons ago, way before SCD. It really was gross. <veg>

Sorry to be so little help.

On the upside, maybe you can persuade her to put

you on LDN.

Mara

February 8, 2010

I thought you were on the rowasa enemas already? We only did that once, and we stopped because we wanted to see if the acupuncture would help by itself (which it did, but only for a limited time).*snip*On the upside, maybe you can persuade her to putyou on LDN. Nope =( Already asked. Bummer. Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)Chinese Herbs (not legal but helping!)

February 8, 2010

Did you say anything about SCD? I would be curious what Duke had to say about

it.

PJ

>

> > I thought you were on the rowasa enemas already?

>

> We only did that once, and we stopped because we wanted to see if the

> acupuncture would help by itself (which it did, but only for a limited

> time).

>

> > *snip*

> >

> > On the upside, maybe you can persuade her to put

> > you on LDN.

>

> Nope =( Already asked. Bummer.

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> Chinese Herbs (not legal but helping!)

>

February 8, 2010

I thought you were on the rowasa enemas already? We only did that once, and we stopped because we wanted to see if the acupuncture would help by itself (which ! it did, but only for a limited time).*snip*On the upside, maybe you can persuade her to putyou on LDN. Nope =( Already asked. Bummer.Did you ask why?Maybe bring her the research printed out the next time you visit.She may not know very much about it. (unless you asked and shedoes.) Mara

February 8, 2010

I didn't mix anything with it (nor was I offered the option). It's gross, but

I've had to drink so many contrasts for SBFT and CTs that I don't think about it

much anymore. My new GI favors CT Enterographies over SBFT, so maybe nowadays

they do let you add flavor to it.

I'm curious about why they are doing a SBFT when you have UC? Are they thinking

you may have crohn's instead?

Holly

Crohn's

SCD 12/01/08

>

> I just had an appointment w/ a new GI doctor at duke, and on the up

> side, she was very nice. On the down side, my bloodwork showed

> inflammation, she's 'very concerned about me,' and I have to get a

> small bowel follow through. And go on meds. =( I know it's just

> temporary, but I honestly feel like the SCD hasn't helped me at all. I

> mean, things probably would've/could've been a lot worse without it.

> And I'm definitely staying on it!!! I just am bummed.

>

> Anyways! What did/do you guys mix the barium with when you had/have

> this done?? SHould I just bring in a legal juice to mix it with? Is

> there a flavor/type that would taste best with the barium? I've heard

> it's gross...

>

> Any tips would be appreciated =)

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> Chinese Herbs (not legal but helping!)

>

February 8, 2010

Did you say anything about SCD? I would be curious what Duke had to say about it.She pretty much said that I could stay on the diet, as long as she was convinced I was getting proper nutrition, but that I had to do the diet IN ADDITION to other medical treatment. Which my parents and I agree with at this point. So she wasn't really for or against it. Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)Chinese Herbs (not legal but helping!)

February 8, 2010

Did you ask why?Same thing as the others. Not enough research, long term especially, so she didn't feel comfortable prescribing it.Maybe bring her the research printed out the next time you visit.She may not know very much about it. (unless you asked and shedoes.) Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)Chinese Herbs (not legal but helping!)

February 8, 2010

I'm curious about why they are doing a SBFT when you have UC? Are they thinking you may have crohn's instead?I think because I told her I have a lot of tummy gurgling sounds. She said that could indicate a narrowing from scar tissue build up (scary!!!). I hope it comes back okay! I know some people have had to have surgery for scar tissue even though the SCD healed them otherwise. Hoping that won't be me!! Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)Chinese Herbs (not legal but helping!)

February 8, 2010

That could also be colon. I think she is being thorough, which is a good thing.

Hopefully all will be well

When is the test?

PJ

>

> > I'm curious about why they are doing a SBFT when you have UC? Are

> > they thinking you may have crohn's instead?

>

> I think because I told her I have a lot of tummy gurgling sounds. She

> said that could indicate a narrowing from scar tissue build up

> (scary!!!). I hope it comes back okay! I know some people have had to

> have surgery for scar tissue even though the SCD healed them

> otherwise. Hoping that won't be me!!

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> Chinese Herbs (not legal but helping!)

>

February 9, 2010

Alyssa,I am going to poke my nose into your life for a second and if I had your mother's email I would just email her directly. The 'normal' temperature you listed in an earlier post is TOO low. Bear with me a second. Most doctors prescribe prednisone to help with UC flares. Prednisone is a synthetic (therefore patenable, marketable, and profitable) form of the natural cortisone hormone your body produces in the adrenal glands, unfortunately it isn't utilized completely the same as your natural hormone. If your cortisone production is off, you missing out on a lot, but most specifically to your health issues, you are missing out on it's inflammatory regulation response. I really recommend you enquire about saliva testing (at four times during the day --

not blood and not urine because blood is a bound one time check and urine is an average for the day which won't catch variances) of your adrenal hormones. This will go hand in hand a lot of times with low thyroid which controls your metabolism and how you use and store energy. You do not need to be at death's door to have adrenal fatigue. Your body is under incredible stress due to UC and it would be very easy and reasonable for your adrenal glands to be fatigued. If you are low thyroid, your adrenals are being stressed even more because it is trying to produce adrenaline to compensate for the malfunctioning of the thyroid. You have osteoporosis. This could be due to an imbalance in your estrogen and progesterone levels. Being so stressed, your body will compensate by robbing your progesterone (which is a precursor hormone) to convert into other hormones to feed the adrenaline needed to possibly compensate for

the low thyroid or the worn out adrenal glands. You then have too much estrogen circulating in the body. The estrogen needs progesterone to turn on the receptor sites so that the estrogen can be taken up and used by the body. Your body will produce estrogen and you receive it in many ways in the form of xenoestrogens from foods, lotions, air fresheners, etc. but only your ovaries produce progesterone. If you are not ovulating, you aren't producing any. If you are under stress (again UC) you most likely aren't ovulating -- but you could still be having a period, with estrogen building continuously because there is not enough progesterone to tell it to shut off production. Research (Dr. Lee) shows that it is the addition of natural bio-identical progesterone, NOT estrogen, that will resolve the osteoporosis. This is because, again, the progesterone is needed to turn on the receptors so that the

estrogen is taken up and used! High circulating estrogen will interfere with thyroid function. The chemicals will all be there, so lab results can look 'normal', BUT the body's USE of those chemicals will be hindered and rendered ineffective. Low thyroid, need adrenaline, stress adrenals and cortisone production, rob progesterone, no estrogen balance, and so goes this vicious cycle.I know this because I have low thyroid, was estrogen dominant, and had a hysterectomy. I am still working on the adrenal issue now because 1/2 my thyroid was removed and am now on an inadequate thyroid replacement therapy.Your body is an incredible thing. It is designed to work in a very

tightly balanced state. It can compensate for imbalances for a very

brief time, after that there are serious domino type effects that will

eventually affect your health. All of the above could seriously be affecting your health and your recovery from UC.If you haven't explored this avenue to health, I strongly recommend that you do.I am now stepping off the soapbox.....AmeliaHusband UC 9 years, SCD 19 monthsLDN 3 mgP.S. Eat more natural fats with the aim of getting more cholesterol -- it is the mother precurosr of the sex and adrenal hormones

To: BTVC-SCD Sent: Mon, February 8, 2010 10:52:48 PMSubject: Small Bowel Follow Through

I just had an appointment w/ a new GI doctor at duke, and on the up

side, she was very nice. On the down side, my bloodwork showed

inflammation, she's 'very concerned about me,' and I have to get a

small bowel follow through. And go on meds. =( I know it's just

temporary, but I honestly feel like the SCD hasn't helped me at all. I

mean, things probably would've/could' ve been a lot worse without it.

And I'm definitely staying on it!!! I just am bummed.

Anyways! What did/do you guys mix the barium with when you had/have

this done?? SHould I just bring in a legal juice to mix it with? Is

there a flavor/type that would taste best with the barium? I've heard

it's gross...

Any tips would be appreciated =)

Peace =)

Alyssa 15 yo

UC April 2008, dx Sept 2008

SCD June 2009 (restarted)

Chinese Herbs (not legal but helping!)

February 9, 2010

At my first CT during SCD I didn't know they were going to mix anything in with

the contrast so I ended up having to drink a whole bunch of juice with sugar in

it. Bleh! When I went to the ER a few days later and had to have another CT

scan I got them to mix the contrast with diet ginger ale. Not the best thing

but WAY better than the sugary grape juice the other place had. I didn't have a

reaction to the diet ginger ale one but if you can, I would suggest bringing in

your own juice. Actually I think the fizziness of the soda helped as well so

maybe grape juice and seltzer?

I hope it goes well for you. Why are you getting the scan? I had mine because

they were worried about an intussusception. The second scan showed that my

entire colon was inflamed but when my doc talked to me about it on the phone he

said to remember that the scan is a single snapshot of an organ that is

constantly moving so it was very unlikely that my entire colon was actually

inflamed (esp b/c a couple of days earlier it was fine).

Also, I know how you feel about being frustrated and feeling like the SCD isn't

working. I've been on it for 4 years and I'm having flares now that are worse

than preSCD. I'm still planning to stay on it but it's hella frustrating when

you're doing something that's supposed to help and it just doesn't feel like

it's working. I hope you feel better soon!

Stacey

>

> I just had an appointment w/ a new GI doctor at duke, and on the up

> side, she was very nice. On the down side, my bloodwork showed

> inflammation, she's 'very concerned about me,' and I have to get a

> small bowel follow through. And go on meds. =( I know it's just

> temporary, but I honestly feel like the SCD hasn't helped me at all. I

> mean, things probably would've/could've been a lot worse without it.

> And I'm definitely staying on it!!! I just am bummed.

>

> Anyways! What did/do you guys mix the barium with when you had/have

> this done?? SHould I just bring in a legal juice to mix it with? Is

> there a flavor/type that would taste best with the barium? I've heard

> it's gross...

>

> Any tips would be appreciated =)

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> Chinese Herbs (not legal but helping!)

>

February 9, 2010

Stacey,

Sorry you are still having difficulties. That has to be frustrating. It's also a

scary thought for those of us starting on the journey. I commend you for

sticking to it, and hope that you reap the benefits soon.

PJ

> >

> > I just had an appointment w/ a new GI doctor at duke, and on the up

> > side, she was very nice. On the down side, my bloodwork showed

> > inflammation, she's 'very concerned about me,' and I have to get a

> > small bowel follow through. And go on meds. =( I know it's just

> > temporary, but I honestly feel like the SCD hasn't helped me at all. I

> > mean, things probably would've/could've been a lot worse without it.

> > And I'm definitely staying on it!!! I just am bummed.

> >

> > Anyways! What did/do you guys mix the barium with when you had/have

> > this done?? SHould I just bring in a legal juice to mix it with? Is

> > there a flavor/type that would taste best with the barium? I've heard

> > it's gross...

> >

> > Any tips would be appreciated =)

> >

> > Peace =)

> > Alyssa 15 yo

> > UC April 2008, dx Sept 2008

> > SCD June 2009 (restarted)

> > Chinese Herbs (not legal but helping!)

> >

>

February 9, 2010

When is the test?Next Wednesday. When any of you had it done, did they let you drink water or juice or broth beforehand? Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)Chinese Herbs (not legal but helping!)

February 9, 2010

Alyssa,

I would second Amelia's recommendation for you to check the hormones.

These gut issues are unbelievable stresses to the body. After nearly 30

years of this, I either have almost no adrenal function or almost none

(and that's been with treatment but nobody knew how bad my problems

were). The saliva test is the way to go, AND it's even easy!

You have to not eat a couple of things that day and otherwise, no prep,

you just stick a cotton roll (like at the dentist) under your tongue

during the four specified times until saturated with saliva, stick them

in the little tubes, and mail them in. Easiest test ever! And yes,

thyroid does go hand in hand, too. I take natural thyroid (have

needed it since I was your age) and I take hydrocortisone, which is not

like prednisone, it's like what the body should be making. I can't

say I wouldn't prefer not to take them but it's replacement doses for

what the body can't make for me. Of course I hope in a few years I won't

need as much. But anyhow, it's a good idea for you to get these

things checked as I think any support that you can give your body at this

time will only help you to start improving.

Alyssa,

I am going to poke my nose into your life for a second and if I had

your mother's email I would just email her directly. The 'normal'

temperature you listed in an earlier post is TOO low. Bear with me a

second. Most doctors prescribe prednisone to help with UC flares.

Prednisone is a synthetic (therefore patenable, marketable, and

profitable) form of the natural cortisone hormone your body produces in

the adrenal glands, unfortunately it isn't utilized completely the same

as your natural hormone. If your cortisone production is off, you missing

out on a lot, but most specifically to your health issues, you are

missing out on it's inflammatory regulation response. I really recommend

you enquire about saliva testing (at four times during the day -- not

blood and not urine because blood is a bound one time check and urine is

an average for the day which won't catch variances) of your adrenal

hormones. This will go hand in hand a lot of times with

low thyroid which controls your metabolism and how you use and store

energy.

Amelia

February 9, 2010

Where do you get the tests and how do you get the hormones?

PJ

>

> Alyssa,

> I would second Amelia's recommendation for you to check the hormones.

> These gut issues are unbelievable stresses to the body. After nearly

> 30 years of this, I either have almost no adrenal function or almost

> none (and that's been with treatment but nobody knew how bad my

> problems were). The saliva test is the way to go, AND it's even

> easy! You have to not eat a couple of things that day and otherwise,

> no prep, you just stick a cotton roll (like at the dentist) under

> your tongue during the four specified times until saturated with

> saliva, stick them in the little tubes, and mail them in. Easiest

> test ever! And yes, thyroid does go hand in hand, too. I take

> natural thyroid (have needed it since I was your age) and I take

> hydrocortisone, which is not like prednisone, it's like what the body

> should be making. I can't say I wouldn't prefer not to take them but

> it's replacement doses for what the body can't make for me. Of course

> I hope in a few years I won't need as much. But anyhow, it's a good

> idea for you to get these things checked as I think any support that

> you can give your body at this time will only help you to start improving.

>

> Alyssa,

> I am going to poke my nose into your life for a second and if I had

> your mother's email I would just email her directly. The 'normal'

> temperature you listed in an earlier post is TOO low. Bear with me a

> second. Most doctors prescribe prednisone to help with UC flares.

> Prednisone is a synthetic (therefore patenable, marketable, and

> profitable) form of the natural cortisone hormone your body produces

> in the adrenal glands, unfortunately it isn't utilized completely the

> same as your natural hormone. If your cortisone production is off,

> you missing out on a lot, but most specifically to your health

> issues, you are missing out on it's inflammatory regulation response.

> I really recommend you enquire about saliva testing (at four times

> during the day -- not blood and not urine because blood is a bound

> one time check and urine is an average for the day which won't catch

> variances) of your adrenal hormones. This will go hand in hand a lot

> of times with

> low thyroid which controls your metabolism and how you use and store energy.

> Amelia

>

February 9, 2010

Hi this is the saliva cortisol test. Just join canary club for free to get it. Its $99.00 but usual cost is $138 so we are getting a good discount. This one you just have to let the saliva flow into a tube. Drink plenty of water the day before.

http://www.canaryclub.org/diurnal-cortisol-4x-zrt.html

I am pretty sure this is the one you use a cotton ball with. It is $125 and you do it six times.

http://www.body-expressions.com/catalog/item/2565073/2263258.htm

If adrenals are stuffed more than likely your thyroid is too. You just need blood for them. If a doctor will not do it. Then go to a private lab.

Sky

To: BTVC-SCD Sent: Wed, 10 February, 2010 7:54:22 AMSubject: Re: Small Bowel Follow Through

Where do you get the tests and how do you get the hormones? PJ>> Alyssa,> I would second Amelia's recommendation for you to check the hormones. > These gut issues are unbelievable stresses to the body. After nearly > 30 years of this, I either have almost no adrenal function or almost > none (and that's been with treatment but nobody knew how bad my > problems were). The saliva test is the way to go, AND it's even > easy! You have to not eat a couple of things that day and otherwise, > no prep, you just stick a cotton roll (like at the dentist) under > your tongue during the four specified times until saturated with > saliva, stick them in the little tubes, and mail them

in. Easiest > test ever! And yes, thyroid does go hand in hand, too. I take > natural thyroid (have needed it since I was your age) and I take > hydrocortisone, which is not like prednisone, it's like what the body > should be making. I can't say I wouldn't prefer not to take them but > it's replacement doses for what the body can't make for me. Of course > I hope in a few years I won't need as much. But anyhow, it's a good > idea for you to get these things checked as I think any support that > you can give your body at this time will only help you to start improving.> > > > Alyssa,> I am going to poke my nose into your life for a second and if I had > your mother's email I would just email her directly. The 'normal' > temperature you listed in an earlier post is TOO low. Bear with me a > second. Most doctors prescribe prednisone to help

with UC flares. > Prednisone is a synthetic (therefore patenable, marketable, and > profitable) form of the natural cortisone hormone your body produces > in the adrenal glands, unfortunately it isn't utilized completely the > same as your natural hormone. If your cortisone production is off, > you missing out on a lot, but most specifically to your health > issues, you are missing out on it's inflammatory regulation response. > I really recommend you enquire about saliva testing (at four times > during the day -- not blood and not urine because blood is a bound > one time check and urine is an average for the day which won't catch > variances) of your adrenal hormones. This will go hand in hand a lot > of times with> low thyroid which controls your metabolism and how you use and store energy.> Amelia>

Yahoo!7: Catch-up on your favourite Channel 7 TV shows easily, legally, and for free at PLUS7. Check it out.

February 9, 2010

PJ,It would be best to get help through a qualified, sympathetic doctor. Having said that, Sky told me about 'Stop the Thyroid Madness' book and website (www.stopthethyroidmadness.com). She is really knowledgeable -- so jump in Sky! In the book it lists saliva testing labs:ZRT Laboratories, www.zrtlab.com, the author recommends Profile III (HPIII) which includes the sex hormones plus the four cortisol profiles.Vitamin Research Products, www.vrp.com, and they offer many different kinds of saliva tests.Genova

Diagnostics, www.gdx.net/home which is formerly the Great Smokes Diagnostic Laboratory. The author recommends to look for the Adrenal Cortex Stress Profile, but there are others.Plus the Canary Club that Sky mentioned.There is also a way to get blood work without a prescription through Healthcheck USA, www.healthcheckusa.com, and they walk in locations in many cities and small towns. go to www.healthcheckusa.com/locations/asp to check for locations of their facilities.You can get bio-identical progesterone (USP 20 mg) in a cream at http://www.betterhealthinternational.com/productDetails.asp?prodID=EM0854 This is where I order mine and they even ship to the UK. The cream is best because when taking progesterone orally (even natural) 95% of it will be filtered out in the liver. The adrenal/glandular extracts you can get at www.nutricology.comI can highly recommend "Natural Progesterone: The multiple roles of a remarkable hormone" by R. Lee MD. It explains a lot about how hormones work as well as specifically regarding progesterone. I haven't finished 'Stop the Thyroid Madness' but it has awesome information regarding self diagnosis and getting and interpreting lab results.The only info I don't have yet is the recommended dosage if I need adrenal extracts -- might be

in the STTM book and I haven't gotten there yet. I would prefer to see a doctor, though to do that. If you will tell me again what city you are in, I can look for some doctors for you. Are you interested in adrenals, thyroid, female hormones, or all of the above? (like me!) ; )AmeliaTo: BTVC-SCD Sent: Tue, February 9, 2010 9:54:22 PMSubject: Re: Small Bowel

Follow Through