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He says he feels ok. It just feels like he has a bladder infection.

Hi Kim,

Stay calm - maybe it is just a bladder infection and not related to the fistula. What makes you so sure the fistula has opened again? Don't forget to take extra probiotics -2 hrs before or after the antibiotics if he needs them. When my son was on antibiotics he also took

Saccharomyces Boulardii from www.kirkmanlabs.com which helped See: http://www.kirkmanlabs.com/ViewProductDetails@Product_ID@... It won't hurt to go back on the intro diet for a while until he feels better.

I'll be praying for both of you.

Take care,

Pat The year's hottest artists on the red carpet at the Grammy Awards. AOL Music takes you there.

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Oh, Kim!

This is so completely not what you need when you are trying to study and

prepare for a big exam!

Come to think on it, this is likewise not what needs when he's

trying to be a support to you!

Yes, I would drop back to the intro for a few days, and then add

easier-to-digest foods back in. Whap him about the head and ears and make

sure he does not drink any more tap water!

I can't blame him for not wanting a colonoscopy -- but if it has to be,

scrupulously check all the prep stuff to be sure it has no illegals in

it.

And have plenty of easy to digest foods before and after!

I'll keep my fingers crossed that Elaine's Miracle Soup will do the trick

again!

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

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Question:

>Whap him about the head and ears and make

> sure he does not drink any more tap water!

Is this a recommendation for everyone or if you have intlerance? We

were just going to get a filter?!

>SCD LEGAL Colonoscopy Prep?

I used Moviprep for my last one (last Monday). It had aspartame in

it?! I know it's not legal. So any recommendations for any future

" look arounds? " What about Barium x-rays?

Kim tell , and yourself, my families prayers are with you. God Bless!

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Question:

>Whap him about the head and ears and make

> sure he does not drink any more tap water!

Is this a recommendation for everyone or if you have intlerance? We

were just going to get a filter?!

>SCD LEGAL Colonoscopy Prep?

I used Moviprep for my last one (last Monday). It had aspartame in

it?! I know it's not legal. So any recommendations for any future

" look arounds? " What about Barium x-rays?

Kim tell , and yourself, my families prayers are with you. God Bless!

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This is so completely not what you need when you are trying to study and

prepare for a big exam!No, not at all. I was already totally stressing over this exam. And I can only handle so much. I get upset easily, stressed easily and I don't deal well with either. I'm thinking of putting it on hold. I'm just afraid it'll be another 5 years (or likely never) before I pick it back up again.

Come to think on it, this is likewise not what needs when he's

trying to be a support to you!Nope, not at all! He was helping me out with the cooking and he's also in school, taking 12 hours and working a full time job. I think this is more than either of us can handle right now.Whap him about the head and ears and make

sure he does not drink any more tap water!LOL....he's so difficult sometimes. He thinks if something gives him D, it's ok as long as nothing hurts. I tried to explain to him that if it gives him D that means he can't tolerate it and shouldn't eat it. He doesn't listen to me though. There are things that he really likes (legal, of course) but they give him D. He tells me, it's no big deal, it doesn't hurt.

I can't blame him for not wanting a colonoscopy -- but if it has to be,

scrupulously check all the prep stuff to be sure it has no illegals in

it.

And have plenty of easy to digest foods before and after!

I'll keep my fingers crossed that Elaine's Miracle Soup will do the trick

again!He went to the doctor today, a PCP, to get antibiotics for the bladder infection. The doctor told him that he needed to see a GI and they would most likely do a CT because it is the least invasive test. He said that they shouldn't do a colonoscopy right now because if the fistula is there, there is inflamation and the disease is active. I get what he's saying and it makes sense but I don't understand why, if the disease is active, he doesn't have any symptoms. His CD is not one to sit back and not make itself known. When he used to have flares, they were big, ugly, hairy flares with fever, vomiting, D, pain, joint pain, etc, etc. He feels fine. I don't get it....I'm not complaining, I just don't understand. The doctor also said that the way fistulas attach are different. Some attach in

such a way that you can take medicine and it will go away (fall off), others will plug up. He said they use medicines like asacol. I've never heard of asacol being used to treat a fistula? I've also never read about them attaching differently but I'm not a fistula expert.Anyway, I have chicken soup going and I'm supposed to be looking for a GI for him to go to. Thanks for the advice and support, Kim H.

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Hi Pat,He said that "matter" and air come out when he goes. That's what happened last time and I don't think that happens with just a regular bladder infection? I wish it wasn't the fistula...really, really, really wish it wasn't.I will get him to do the probiotics. And thank you for the prayers.Kim H.

Hi Kim,

Stay calm - maybe it is just a bladder infection and not related to the fistula. What makes you so sure the fistula has opened again? Don't forget to take extra probiotics -2 hrs before or after the antibiotics if he needs them. When my son was on antibiotics he also took

Saccharomyces Boulardii from www.kirkmanlabs. com which helped See: http://www.kirkmanl abs.com/ViewProd uctDetails@ Product_ID@ 189.aspx It won't hurt to go back on the intro diet for a while until he feels better.

I'll be praying for both of you.

Take care,

Pat The year's hottest artists on the red carpet at the Grammy Awards. AOL Music takes you there.

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Question:

>Whap him about the head and ears and make

> sure he does not drink any more tap water!

Is this a recommendation for everyone or if you have intlerance? To get whapped around the head and ears?....That's only for those who do not comply ;-)Tap water is not illegal on SCD. Some people are more sensitive than others. Water quality varies widely depending on where you live so a filter is probably a good idea.

Kim tell , and yourself, my families prayers are with you. God Bless!Thanks so much.Kim H.

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Question:

>Whap him about the head and ears and make

> sure he does not drink any more tap water!

Is this a recommendation for everyone or if you have intlerance? To get whapped around the head and ears?....That's only for those who do not comply ;-)Tap water is not illegal on SCD. Some people are more sensitive than others. Water quality varies widely depending on where you live so a filter is probably a good idea.

Kim tell , and yourself, my families prayers are with you. God Bless!Thanks so much.Kim H.

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In general, filtered water is a good idea... we got filters on the house

after a chemical dump in 1979 in the Mississippi River.

Tap water isn't " forbidden, " but Kim's husband has a history of

reacting to tap water, and it's sort of a case of, " Nothing --

especially tap water -- is so tasty that it's worth having symptoms

over! "

Movicol looks like it doesn't contain illegals... as long as you don't

use the flavor packets that come with it.

Where I ran into a problem was the laxative I was given beforehand

proved, when I researched it, to containe, not one, but FOUR illegals. I

found a different laxative which did not contain these and used

that.

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

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In general, filtered water is a good idea... we got filters on the house

after a chemical dump in 1979 in the Mississippi River.

Tap water isn't " forbidden, " but Kim's husband has a history of

reacting to tap water, and it's sort of a case of, " Nothing --

especially tap water -- is so tasty that it's worth having symptoms

over! "

Movicol looks like it doesn't contain illegals... as long as you don't

use the flavor packets that come with it.

Where I ran into a problem was the laxative I was given beforehand

proved, when I researched it, to containe, not one, but FOUR illegals. I

found a different laxative which did not contain these and used

that.

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

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Kim,

I don't handle stress well, either. Is the testing for tax work? Or real

estate?

You realize, of course, that even though he's not conscious of the

stress, working a full-time job and going to school can be enough to

throw anyone's system off. He's been feeling so good, compared to what he

had before that he's not paying attention.

At least he went to the PCP! And the suggestion is not the full-blown

colonoscopy! That's a plus.

The other suggestions -- the yogurt, the acidophilus, the s. boulardii

are also great.

You, of all people, know the steps to take in a situation like this --

and with seven years' experience, you know it's not the end of the world.

It's just that you thought you had the Crohn's licked and here it is

rearing its ugly head again. That's scary and frustrating, too.

And just think -- though looking for a GI is not fun... he's been doing

so well these last years that he doesn't have a regular GI!

So now you start researching fistulas....

We're thinking of you and , both.

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

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Hi Kim H,

This might not be the most popular response so please take this to heart.

I am so sorry is going through this.

I don't want to go too much into my sob story buuut...

When I was dealing with horrible bladder issues and Crohn's it started

for me on 6MP. After I took it I developed very odd UTI's and

extremely painful peeing. Every other day I was in my GI's office

getting urine tested. The bacteria that came up in the test was

always different. This perplexed my doc and nurses. I was on

antibiotics, and Peridium (sp?) and was in agony. Until I tested

positive for staph on my bladder wall than I had to do testing for

that. The GI referred me to

urologist that was an idiot he wanted to enroll me in a study for

incontinence and I was like " huh, that is not my problem chronic UTI's

are and I have a staph infection on my bladder wall "

Needless to say he referred me to some big wig urologist that knew

-exactly- about CD and bladder issues. I still have odd bladder

problems to this day..

Anyway- this doc (and it wasn't the first) said it is so important to

look at CD patients clinically as sometimes someone might have many

complications walking around fine and others might have the slightest

complication and they are bed-ridden. My GI also told me he once saw

a fellow that ran a marathon that had CD and his images were a

complete mess with something like 13 wrapping fistulas. That same guy

still ran a marathon having this inside him. The human body is

complex and amazing.

Have you ever looked into LDN to help with healing?

That could be an option if it becomes worrisome for you guys..

Not sure how it works with fistulizing CD.

The bladder issues and CD can be horrible. I still have issues too

but just don't have the fortitude to get all of that invasive

testing... It's gotten so much better.

Stay strong..

Jodi

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Hi Kim H,

This might not be the most popular response so please take this to heart.

I am so sorry is going through this.

I don't want to go too much into my sob story buuut...

When I was dealing with horrible bladder issues and Crohn's it started

for me on 6MP. After I took it I developed very odd UTI's and

extremely painful peeing. Every other day I was in my GI's office

getting urine tested. The bacteria that came up in the test was

always different. This perplexed my doc and nurses. I was on

antibiotics, and Peridium (sp?) and was in agony. Until I tested

positive for staph on my bladder wall than I had to do testing for

that. The GI referred me to

urologist that was an idiot he wanted to enroll me in a study for

incontinence and I was like " huh, that is not my problem chronic UTI's

are and I have a staph infection on my bladder wall "

Needless to say he referred me to some big wig urologist that knew

-exactly- about CD and bladder issues. I still have odd bladder

problems to this day..

Anyway- this doc (and it wasn't the first) said it is so important to

look at CD patients clinically as sometimes someone might have many

complications walking around fine and others might have the slightest

complication and they are bed-ridden. My GI also told me he once saw

a fellow that ran a marathon that had CD and his images were a

complete mess with something like 13 wrapping fistulas. That same guy

still ran a marathon having this inside him. The human body is

complex and amazing.

Have you ever looked into LDN to help with healing?

That could be an option if it becomes worrisome for you guys..

Not sure how it works with fistulizing CD.

The bladder issues and CD can be horrible. I still have issues too

but just don't have the fortitude to get all of that invasive

testing... It's gotten so much better.

Stay strong..

Jodi

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relation to fistulas.

Hi Kim,

Don't know if you want to go this route but I do know someone whose fistula was healed with growth hormone. See: http://www.ncbi.nlm.nih.gov/pubmed/11832081

Google crohn's and growth hormone and fistula and growth hormone. You'll get lots of articles.

Take care,

Pat The year's hottest artists on the red carpet at the Grammy Awards. AOL Music takes you there.

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Marilyn,

I don't handle stress well, either. Is the testing for tax work? Or real estate?

It's to get my CPA license. I don't do tax work anymore...well usually. I spent all day last Friday doing my family's returns. I work in financial reporting right now. Doing tax and audit work involves really long hours and I got really tired of it. Getting my CPA is important because it will open some doors.

was doing real estate for a while. He had to give it up when the bottom fell out of the market. That's why he's back in school. He's working in a warehouse right now. In the winter, it's not too bad but in the summer, it's really, really hard on him. His body doesn't handle the heat well and it seems like the older he gets, the less tolerance he has for it.You realize, of course, that even though he's not conscious of the stress, working a full-time job and going to school can be enough to throw anyone's system off. He's been feeling so good, compared to what he had before that he's not paying attention.

Very true and he tends to push himself and not listen to his body anyway.

At least he went to the PCP! And the suggestion is not the full-blown colonoscopy! That's a plus.

Definitely. I think the PCP scared him into getting one though, after he goes back into remission. He said something to the effect that people with CD are likely to develop colon cancer. I've read that people with CD are more likely than others to develop it. There's a difference. Anyway, having a colonoscopy to check isn't a bad idea. He hasn't had one in quite a while. The other suggestions -- the yogurt, the acidophilus, the s. boulardii are also great. You, of all people, know the steps to take in a situation like this -- and with seven years' experience, you know it's not the end of the world. It's just that you thought you had the Crohn's licked and here it is rearing its ugly head again. That's scary and frustrating, too.

Yeah, it really caught me off guard. That was the last thing I expected and he texted it to me....it said 'my fistula opened'. You don't text someone that! I about tossed my cookies. I have calmed down now and my brain is functioning again. We're on the intro. And he's loving it <can you hear the sarcasm?> He hates "the soup" and bland food but it's what has to be done....

And I think my initial freak out had to do with what happened last time. Last time he was so incredibly sick he could barely get out of bed. It wasn't just the fistula though, he was in a major flare but my brain associates the fistula with that period when he was so sick and it scared the crap out of me.

And just think -- though looking for a GI is not fun... he's been doing so well these last years that he doesn't have a regular GI!

We tracked down his old GI and he has an appt to see him on 3/23. He's a good doctor and very supportive of the diet. The last time we saw him, he had mentioned wanting to do a study on the effect of diet on IBD but was unable to get funding. I remember liking him.....as much as you can like a GI anyway ;-) And he has an appt for the cat scan on Friday.

So now you start researching fistulas....

.....And meds. I'm thinking he's probably going to want to put on something. He is a doctor after all so I want to be prepared.

I am hoping that by the time of the appt, the fistula won't be causing problems and he won't want to pull out the big guns. 's already done the Remicade and 6MP thing.....it didn't go well.

We're thinking of you and , both.Thanks so much.

Kim

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Hi Jodi,Thank you. I want to research meds before the GI appt. I think he will probably want to put on something and I want to be prepared. didn't do well with 6MP either. He started after the bladder problem so it wasn't the cause but it didn't help matters at all.I did google LDN last night because I remembered you, Mara and others talking about how much it has helped. I couldn't find anything about it in relation to fistulas. I didn't spend a whole lot of time looking yet. I will definitely do some more research.Thanks again.Take care,Kim H. Hi Kim H, This might not be the most popular response so please take this to heart. I am so sorry is going through this. I don't want to go too much into my sob story buuut... When I was dealing with horrible bladder issues and Crohn's it started for me on 6MP. After I took it I developed very odd UTI's and extremely painful peeing. Every other day I was in my GI's office getting urine tested. The bacteria that came up in the test was always different. This perplexed my doc and nurses. I was on antibiotics, and Peridium (sp?) and was in

agony. Until I tested positive for staph on my bladder wall than I had to do testing for that. The GI referred me to urologist that was an idiot he wanted to enroll me in a study for incontinence and I was like "huh, that is not my problem chronic UTI's are and I have a staph infection on my bladder wall" Needless to say he referred me to some big wig urologist that knew -exactly- about CD and bladder issues. I still have odd bladder problems to this day.. Anyway- this doc (and it wasn't the first) said it is so important to look at CD patients clinically as sometimes someone might have many complications walking around fine and others might have the slightest complication and they are bed-ridden. My GI also told me he once saw a fellow that ran a marathon that had CD and his images were a complete mess with something like 13 wrapping fistulas. That same guy still ran a marathon

having this inside him. The human body is complex and amazing. Have you ever looked into LDN to help with healing? That could be an option if it becomes worrisome for you guys.. Not sure how it works with fistulizing CD. The bladder issues and CD can be horrible. I still have issues too but just don't have the fortitude to get all of that invasive testing... It's gotten so much better. Stay strong.. Jodi

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Hi Jodi,Thank you. I want to research meds before the GI appt. I think he will probably want to put on something and I want to be prepared. didn't do well with 6MP either. He started after the bladder problem so it wasn't the cause but it didn't help matters at all.I did google LDN last night because I remembered you, Mara and others talking about how much it has helped. I couldn't find anything about it in relation to fistulas. I didn't spend a whole lot of time looking yet. I will definitely do some more research.Thanks again.Take care,Kim H. Hi Kim H, This might not be the most popular response so please take this to heart. I am so sorry is going through this. I don't want to go too much into my sob story buuut... When I was dealing with horrible bladder issues and Crohn's it started for me on 6MP. After I took it I developed very odd UTI's and extremely painful peeing. Every other day I was in my GI's office getting urine tested. The bacteria that came up in the test was always different. This perplexed my doc and nurses. I was on antibiotics, and Peridium (sp?) and was in

agony. Until I tested positive for staph on my bladder wall than I had to do testing for that. The GI referred me to urologist that was an idiot he wanted to enroll me in a study for incontinence and I was like "huh, that is not my problem chronic UTI's are and I have a staph infection on my bladder wall" Needless to say he referred me to some big wig urologist that knew -exactly- about CD and bladder issues. I still have odd bladder problems to this day.. Anyway- this doc (and it wasn't the first) said it is so important to look at CD patients clinically as sometimes someone might have many complications walking around fine and others might have the slightest complication and they are bed-ridden. My GI also told me he once saw a fellow that ran a marathon that had CD and his images were a complete mess with something like 13 wrapping fistulas. That same guy still ran a marathon

having this inside him. The human body is complex and amazing. Have you ever looked into LDN to help with healing? That could be an option if it becomes worrisome for you guys.. Not sure how it works with fistulizing CD. The bladder issues and CD can be horrible. I still have issues too but just don't have the fortitude to get all of that invasive testing... It's gotten so much better. Stay strong.. Jodi

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Kim,

That's right! I'd spaced which of you was in real estate and which was in

financials. Just remembered the combination.

As for not paying attention to his body, well, it's kinda common with us

SCDers.... <deep sigh> We want so badly for everything to be NORMAL

that we just try to do whatever it takes to be what we think of as

normal. Even when we push ourselves entirely too far.

Definitely. I think the PCP scared

him into getting one though, after he goes back into remission. He said

something to the effect that people with CD are likely to develop colon

cancer. I've read that people with CD are more likely than others to

develop it. There's a difference. Anyway, having a colonoscopy to check

isn't a bad idea. He hasn't had one in quite a while.

Absolutely, there's a difference between " likely to

develop " and " more likely than others " !! Yeesh. How long

has it been since he's had one?

Yeah, it really caught me off

guard. That was the last thing I expected and he texted it to me....it

said 'my fistula opened'. You don't text someone that! I about tossed my

cookies. I have calmed down now and my brain is functioning again. We're

on the intro. And he's loving it <can you hear the sarcasm?> He

hates " the soup " and bland food but it's what has to be

done....

OK, if Harry pulled a stunt like that on me, I'd've tracked

him down and whalloped him. Though I suppose I did something altogether

too similar when I called him last year from the gyn's office and said,

" Harry, can you come down to the doctor's office? It's

cancer... "

It could be worse... at least the soup tastes good... and he can have as

much of the basics as he wants. Plus you have an advantage this time

around: you both know SCD works!

And I think my initial freak out had to do with

what happened last time. Last time he was so incredibly sick he could

barely get out of bed. It wasn't just the fistula though, he was in a

major flare but my brain associates the fistula with that period when he

was so sick and it scared the crap out of me.

Yeah. It would scare me, too. Harry has chronic fatigue issues

(which have improved since SCD) and I stew every time he's " too

tired. " I'm really glad you were able to find an SCD-friendly doctor

to go back to.

Keep us posted on your researches!

And we'll continue to send Pink

Lights in your direction!

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

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Kim,

That's right! I'd spaced which of you was in real estate and which was in

financials. Just remembered the combination.

As for not paying attention to his body, well, it's kinda common with us

SCDers.... <deep sigh> We want so badly for everything to be NORMAL

that we just try to do whatever it takes to be what we think of as

normal. Even when we push ourselves entirely too far.

Definitely. I think the PCP scared

him into getting one though, after he goes back into remission. He said

something to the effect that people with CD are likely to develop colon

cancer. I've read that people with CD are more likely than others to

develop it. There's a difference. Anyway, having a colonoscopy to check

isn't a bad idea. He hasn't had one in quite a while.

Absolutely, there's a difference between " likely to

develop " and " more likely than others " !! Yeesh. How long

has it been since he's had one?

Yeah, it really caught me off

guard. That was the last thing I expected and he texted it to me....it

said 'my fistula opened'. You don't text someone that! I about tossed my

cookies. I have calmed down now and my brain is functioning again. We're

on the intro. And he's loving it <can you hear the sarcasm?> He

hates " the soup " and bland food but it's what has to be

done....

OK, if Harry pulled a stunt like that on me, I'd've tracked

him down and whalloped him. Though I suppose I did something altogether

too similar when I called him last year from the gyn's office and said,

" Harry, can you come down to the doctor's office? It's

cancer... "

It could be worse... at least the soup tastes good... and he can have as

much of the basics as he wants. Plus you have an advantage this time

around: you both know SCD works!

And I think my initial freak out had to do with

what happened last time. Last time he was so incredibly sick he could

barely get out of bed. It wasn't just the fistula though, he was in a

major flare but my brain associates the fistula with that period when he

was so sick and it scared the crap out of me.

Yeah. It would scare me, too. Harry has chronic fatigue issues

(which have improved since SCD) and I stew every time he's " too

tired. " I'm really glad you were able to find an SCD-friendly doctor

to go back to.

Keep us posted on your researches!

And we'll continue to send Pink

Lights in your direction!

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

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Marilyn,

Absolutely, there's a difference between "likely to

develop" and "more likely than others"!! Yeesh. How long

has it been since he's had one?

It's been about 8 or 9 years. He hasn't had one since being on the diet. I've always been curious about how everything looks in there now but not curious enough to try and get him to have one. Every time he's ever had one, he flares really bad....like spend a week in the hospital bad.

OK, if Harry pulled a stunt like that on me, I'd've tracked

him down and whalloped him. Though I suppose I did something altogether

too similar when I called him last year from the gyn's office and said,

"Harry, can you come down to the doctor's office? It's

cancer..."Those are the calls (or texts) you never want to get!It could be worse... at least the soup tastes good... and he can have as

much of the basics as he wants. Plus you have an advantage this time

around: you both know SCD works!Very true and I made him some hamburger patties. He likes those. If I can get him to have a little of the broth and eat the HB patties that should keep everyone happy.

Keep us posted on your researches! Will do. was supposed to have the cat scan today. He drank the jug of

barium stuff and hours later still felt that it was stuck inside of him. He can't

poop. He made himself vomit and that helped some. He keeps saying, 'I just need to get

this stuff out of me'. I thought

about giving him juice to try and get it out. A lot of the time

straight juice will give him D. But the D was better, he was

almost back to normal before this barium crap, so I don't know if that's a good idea or not. I don't want to make

things worse.

BTW, he drank the stuff for nothing. He ended up not having the test

done. He got there and we have to satisfy the deductible first and it's a lot

of money and we're broke. He didn't even call me. I would've told him

to get it done anyway and I would've figured out the money part. I hate

that he drank that crap for nothing. And I can't even find the

ingredients, not that that would help now but I want to know. The company's website says they are

proprietary.And we'll continue to send Pink

Lights in your direction!Thanks so much. We really appreciate it.Kim H.

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