Re: need helps staying out of hospital- long post, sorry!

[Guest guest]

Thanks, Mara.

I'm still confused about my fevers. Sometimes it seemed to be linked to a lot of

fiber, but I don't know. I guess i don't know what is die off and what is just

part of the flare. Towards the end when I had to go to the hospital and I was

getting fevers every day and night, I know it was was the flare, because that's

how my initial presentation of Crohn's started. It's the random fevers in

between that I don't get. Hopefully I can figure it out.

I guess I could ask my husband to help me bring SCD foods to the hospital. I

just feel really guilty asking him since he works midnights and I know he's

exhausted. Hopefully it doesn't come down to that, but I know he would do it if

I asked him. The problem was before the prednisone, I wasn't really sure if I

could handle nut products, and it seems like so many pre-baked items are nut

based. Plus I was on a low residue diet, so that meant everything cooked...Maybe

I'll try and do a lot of other cooking now and freeze it, just in case. I just

hope I don't get so sick that I have to go to an out of state hospital which is

what I did when I first got sick and they couldn't get the diagnosis right. That

would make it very stressful to try and stick to the diet. I hope it doesn't get

to that point!

But thank you for answering all my questions!

I really appreciate everyone in this group!

(I also need to spell check, because I don't need " helps " , I need " help " - oops!)

>

> > Hi Everyone,

> >

> > First off, I want to thank everyone who answered my past questions. I've

been trying to go through all the e-mails, but it's been a time consuming

experience. So I do appreciate everyone who has answered my questions, and I'm

sorry if I didn't thank you specifically.

> >

> > I was/am having a Crohn's flare up (my first since being diagnosed last

year) and had to be hospitalized for a week, because I couldn't get my

fevers/dehydration under control and my CRP was 150. My fevers get really high,

up to 103 (at least that's high for me), and they really drain me, plus

contribute to the dehydration.

> >

> > I'm on Remicade and Methotrexate, and apparently the Remicade is wearing off

or not working anymore. When I was in the hospital, my dose was doubled. It kept

the fevers away for about 4 days, and then they came back, so now I'm on

Prednisone as well. Thankfully, the Pred seems to be keeping the fevers at bay,

especially since my GI started to talk about the possibility of surgery if they

can't get things under control. I'm really scared, and I haven't even been

diagnosed for a year yet.

> >

> > Anyways, when I was in the hospital, I wan't SCD legal. I tried my best, but

with all the crap I had to drink for scopes and CT scans, I'm sure it was full

of illegals, and the stuff I could order off the hospital menu when I could

actually eat I know had illegals in it.

> >

> > I guess I'm looking for advice and input. First off, I'd like to do my best

to stay out of the hospital. I'm going to my GI on Thursday to discuss

medications. I'm thinking he'll probably want to switch me to Humira, since it

doesn't seem like the Remicade is working anymore. I want to bring up LDN, but

I'm pretty positive he'll turn it down. I've just heard how well it works with

SCD, but I'm not sure how long it takes to kick in, and if it works for only

certain cases of Crohn's- maybe less mild?

> >

> > So here are my questions-

> >

> > 1. Now that I'm on Prednisone, I'm assuming that masks any type of food

reaction I could have. Is that correct?

>

> yep.

>

> > And if so, how do I know which foods I can really tolerate, do I just wait

until I can get off prednisone?

>

> yes. Once you decrease substantially, go back to intro and easy stuff for a

while.

>

> >

> > 2. Does anyone know if certain foods can contribute to fevers (I may have

asked this here before, and if so, I'm sorry)? Before I got into the really bad

flare, I would have times where I would just spike a fever of 103 for a day, but

then it would go away the next day. Has anyone seen any correlation between

fevers and food?

>

> My fevers - especially up to 103 - are tied into die off rather than

particular foods. That could have been what

> you were having - if that is while you were on the SCD.

>

> If you got blood tested during that time, look at your liver enzymes - if they

are high, it might be

> because of the toxicity of the die off in your system.

>

> >

> > 3. What about the illegals in my meds, do I just deal with that? I was

taking Tylenol to get my fevers down, and I'm sure it has illegals. I'm sure the

pred does too. I don't think I can afford to get everything compounded. Will it

just take longer for me to heal?

>

> Yeah - I've never gotten anything compounded. If it is a daily drug, then

things will just take

> longer.

>

> >

> > 4. Should I or should I not be taking supplements and probiotics? I'm still

not sure if the yogurt is working with or against me. Should I just order

probiotics online and lay off the yogurt for a while?

>

> If you are in a flare, I would try to minimize supplements.

> Probiotics, I would take. But start out with a small amount and

> work up.

>

> >

> > 5. If I have to go back to the hospital, does anyone have any suggestions on

how to stay SCD legal? It doesn't seem possible to me, but I'm wondering if

anyone has had any experience with that.

>

> people who do it seem to make a lot of food beforehand. Do you have a

> friend or relative who could help with this? Mother, etc? It's a lot of

> energy if you are sick already.

>

> >

> > 6. Is the Freeda prenatal vitamin legal? I have been taking them, but I

think I read that anything with iron is illegal. Also, does that mean that

cooking with an iron skillet is not ideal? I am anemic so I know I need iron,

and I'm confused on how to get it.

>

> Iron IVs. Or iron skillet. And things with iron in them - like beets and

liver and kale, etc.

> >

> > 7. I guess this is OT, but for those of you on LDN, did you get approval

through your actual GI,

>

> GI, but many people need to find another doctor.

>

> > or did you have to go out on your own? Also, was your case severe, or do you

know if LDN works for moderate to severe Crohn's cases?

>

> It can help severe cases as well.

>

> Feel 1000% times better,

>

> Mara

>

[Guest guest]

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of fossil.color

I guess I'm looking for advice and input. First

off, I'd like to do my best to stay out of the hospital. I'm going to my GI on

Thursday to discuss medications. I'm thinking he'll probably want to switch me

to Humira, since it doesn't seem like the Remicade is working anymore. I want

to bring up LDN, but I'm pretty positive he'll turn it down. I've just heard

how well it works with SCD, but I'm not sure how long it takes to kick in, and

if it works for only certain cases of Crohn's- maybe less mild?

My advice? Get off those immune suppressants and

get on LDN, transdermal cream (to bypass your gut for easy absorption). My

script reads Naltrexone HCL 6 mg/ml, gel. I get it from www.CoastalCompounding.com 

If your GI won’t prescribe & you are determined to try it, then

http://www.webspawner.com/users/howtoobtainldn/index.html

to make your own liquid LDN, no script needed.

Go to LDNScience.org I believe there is a link to the Dr.

Jill clinical trials for Crohn’s. Print that out to take to your

GI. And any other pertinent information.

So here are my questions-

1. Now that I'm on Prednisone, I'm assuming that masks any type of food

reaction I could have. Is that correct? And if so, how do I know which foods I

can really tolerate, do I just wait until I can get off prednisone? I think high doses mask symptoms.

2. Does anyone know if certain foods can contribute to fevers (I may have asked

this here before, and if so, I'm sorry)? Before I got into the really bad

flare, I would have times where I would just spike a fever of 103 for a day,

but then it would go away the next day. Has anyone seen any correlation between

fevers and food? I don’t know. I had nightly

low-grade fevers for years (post menopause), even while on SCD. The fevers

stopped once I got on LDN. Immediately.

3. What about the illegals in my meds, do I just deal with that? I was taking Tylenol

to get my fevers down, and I'm sure it has illegals. I'm sure the pred does

too. I don't think I can afford to get everything compounded. Will it just take

longer for me to heal? Meds are necessary at times.

Try not to stress out about them.

4. Should I or should I not be taking supplements and probiotics? I'm still not

sure if the yogurt is working with or against me. Should I just order

probiotics online and lay off the yogurt for a while?

I think I would stop the supplements for awhile.

Maybe try just the legal probiotic, slowly, like 1 every other day or so. I

take Lyosan L. acidophilus capsules (I get them from Lucy’s Kitchen

Shop). The directions on the bottle say to take 2-3/day. That amount was way

too much for me, gave me big time D. So I tried 1 every other day and worked up

to 1/day with no problem. As with everything else, you’ll have to find

the dosage that works for you.

5. If I have to go back to the hospital, does anyone have any suggestions on

how to stay SCD legal? It doesn't seem possible to me, but I'm wondering if

anyone has had any experience with that.

I think the only way to stay SCD legal is to make

& bring all your own food, especially bone broth soups (pureed to within an

inch of their lives), gelatin, etc, whatever easy to digest foods work for you.

Bring legal juice to dilute & drink. I would not rely on Hospital Food!

As an aside, my 2nd

hosp. visit (this was pre-SCD) lasted 4 days. I had nothing to eat for 2 ½ days

because of various tests. So guess what the Hospital Food du’jour was

when I could finally eat? Chicken fried steak with gravy (this is Texas, after

all). OMG I couldn’t believe I had to break my 2 ½ day fast with that.

But I did – ugh. And with dire consequences.

6. Is the Freeda prenatal vitamin legal? I have been taking them, but I think I

read that anything with iron is illegal. Also, does that mean that cooking with

an iron skillet is not ideal? I am anemic so I know I need iron, and I'm

confused on how to get it. Well, the iron in them

is not legal and could possibly be causing problems. I cook in cast iron with

no problem. I was anemic for about the 1st year on SCD but that

resolved itself without me taking iron tablets. You could ask about iron

infusions. I did use cast iron skillets to cook in, still do. And Freeda makes

a SCD Multi-Vitamin.

7. I guess this is OT, but for those of you on LDN, did you get approval

through your actual GI, or did you have to go out on your own? Also, was your

case severe, or do you know if LDN works for moderate to severe Crohn's cases? See the Dr. Jill clinical trials on LDN &

Crohn’s. For me personally, my Crohn’s was severe, I’d had

symptoms for 17 years before being correctly dx’d. My GI said I was one

of the worst cases he’d ever seen (lucky me – what a distinction

<g>). He was all about drugs & surgery and I didn’t know any

better.

I had been on the

SCD for 4 ½ years before learning about LDN. As with the SCD, I wish I had

known about Low Dose Naltrexone years ago. So far the LDN has improved

dramatically my dehydration problem and has resolved the low grade fevers.

Plus, it elevates my mood. Many people with bowel disease are lacking in

endorphins and LDN works to create more endorphins.

I lost my health ins.

when I retired from my job, so I had to find a new doc who would prescribe LDN.

I can pretty much guarantee none of my previous GIs or PCP would prescribe LDN

because they were all about Big pHARMa drugs & surgery and each one told me

diet had nothing to do with my horrible symptoms!

Sorry this post was so long. I'm a bit

overwhelmed right now and want to do all in my power that I can to help myself

heal and get things under control. I appreciate your listening and look forward

to your responses. I’m so sorry – I can

relate to feeling scared and overwhelmed. Try to relax if you can, maybe with

that old stand by the Epsom Salt Bath. Are you able to tolerate some type of

electrolyte drink, either the SCD recipe or E-lyte?

Carol

CD 22 yrs  SCD 5

yrs  B12 shots  LDN cream

_,_._,___

[Guest guest]

Just want to jump in to mention that if prednisone dose is higher than 5-10 mg daily, then it will act as an immune suppressant and clash with the LDN -- meaning they will negate one another. You would need to go through your taper until you reach the 5-10mg/day point before starting LDNAmeliaTo: BTVC-SCD Sent: Tue, March 16, 2010 9:58:58 PMSubject: RE: need helps staying out of hospital- long post, sorry!

From:

BTVC-SCD@yahoogroup s.com [mailto:BTVC- SCD (AT) yahoogroups (DOT) com] On Behalf Of fossil.color

I guess I'm looking for advice and input. First

off, I'd like to do my best to stay out of the hospital. I'm going to my GI on

Thursday to discuss medications. I'm thinking he'll probably want to switch me

to Humira, since it doesn't seem like the Remicade is working anymore. I want

to bring up LDN, but I'm pretty positive he'll turn it down. I've just heard

how well it works with SCD, but I'm not sure how long it takes to kick in, and

if it works for only certain cases of Crohn's- maybe less mild?

My advice? Get off those immune suppressants and

get on LDN, transdermal cream (to bypass your gut for easy absorption). My

script reads Naltrexone HCL 6 mg/ml, gel. I get it from www.CoastalCompound ing.com

If your GI won’t prescribe & you are determined to try it, then http://www.webspawner.com/users/howtoobtainldn/index.html

to make your own liquid LDN, no script needed. Go to LDNScience.org I believe there is a link to the Dr.

Jill clinical trials for Crohn’s. Print that out to take to your

GI. And any other pertinent information. So here are my questions-

1. Now that I'm on Prednisone, I'm assuming that masks any type of food

reaction I could have. Is that correct? And if so, how do I know which foods I

can really tolerate, do I just wait until I can get off prednisone? I think high doses mask symptoms.

2. Does anyone know if certain foods can contribute to fevers (I may have asked

this here before, and if so, I'm sorry)? Before I got into the really bad

flare, I would have times where I would just spike a fever of 103 for a day,

but then it would go away the next day. Has anyone seen any correlation between

fevers and food? I don’t know. I had nightly

low-grade fevers for years (post menopause), even while on SCD. The fevers

stopped once I got on LDN. Immediately.

3. What about the illegals in my meds, do I just deal with that? I was taking Tylenol

to get my fevers down, and I'm sure it has illegals. I'm sure the pred does

too. I don't think I can afford to get everything compounded. Will it just take

longer for me to heal? Meds are necessary at times.

Try not to stress out about them.

4. Should I or should I not be taking supplements and probiotics? I'm still not

sure if the yogurt is working with or against me. Should I just order

probiotics online and lay off the yogurt for a while?

I think I would stop the supplements for awhile.

Maybe try just the legal probiotic, slowly, like 1 every other day or so. I

take Lyosan L. acidophilus capsules (I get them from Lucy’s Kitchen

Shop). The directions on the bottle say to take 2-3/day. That amount was way

too much for me, gave me big time D. So I tried 1 every other day and worked up

to 1/day with no problem. As with everything else, you’ll have to find

the dosage that works for you.

5. If I have to go back to the hospital, does anyone have any suggestions on

how to stay SCD legal? It doesn't seem possible to me, but I'm wondering if

anyone has had any experience with that.

I think the only way to stay SCD legal is to make

& bring all your own food, especially bone broth soups (pureed to within an

inch of their lives), gelatin, etc, whatever easy to digest foods work for you.

Bring legal juice to dilute & drink. I would not rely on Hospital Food! As an aside, my 2nd

hosp. visit (this was pre-SCD) lasted 4 days. I had nothing to eat for 2 ½ days

because of various tests. So guess what the Hospital Food du’jour was

when I could finally eat? Chicken fried steak with gravy (this is Texas, after

all). OMG I couldn’t believe I had to break my 2 ½ day fast with that.

But I did – ugh. And with dire consequences.

6. Is the Freeda prenatal vitamin legal? I have been taking them, but I think I

read that anything with iron is illegal. Also, does that mean that cooking with

an iron skillet is not ideal? I am anemic so I know I need iron, and I'm

confused on how to get it. Well, the iron in them

is not legal and could possibly be causing problems. I cook in cast iron with

no problem. I was anemic for about the 1st year on SCD but that

resolved itself without me taking iron tablets. You could ask about iron

infusions. I did use cast iron skillets to cook in, still do. And Freeda makes

a SCD Multi-Vitamin.

7. I guess this is OT, but for those of you on LDN, did you get approval

through your actual GI, or did you have to go out on your own? Also, was your

case severe, or do you know if LDN works for moderate to severe Crohn's cases? See the Dr. Jill clinical trials on LDN &

Crohn’s. For me personally, my Crohn’s was severe, I’d had

symptoms for 17 years before being correctly dx’d. My GI said I was one

of the worst cases he’d ever seen (lucky me – what a distinction

<g>). He was all about drugs & surgery and I didn’t know any

better. I had been on the

SCD for 4 ½ years before learning about LDN. As with the SCD, I wish I had

known about Low Dose Naltrexone years ago. So far the LDN has improved

dramatically my dehydration problem and has resolved the low grade fevers.

Plus, it elevates my mood. Many people with bowel disease are lacking in

endorphins and LDN works to create more endorphins. I lost my health ins.

when I retired from my job, so I had to find a new doc who would prescribe LDN.

I can pretty much guarantee none of my previous GIs or PCP would prescribe LDN

because they were all about Big pHARMa drugs & surgery and each one told me

diet had nothing to do with my horrible symptoms! Sorry this post was so long. I'm a bit

overwhelmed right now and want to do all in my power that I can to help myself

heal and get things under control. I appreciate your listening and look forward

to your responses. I’m so sorry – I can

relate to feeling scared and overwhelmed. Try to relax if you can, maybe with

that old stand by the Epsom Salt Bath. Are you able to tolerate some type of

electrolyte drink, either the SCD recipe or E-lyte? Carol CD 22 yrs SCD 5

yrs B12 shots LDN cream

_,_._,___

[Guest guest]

I’m re-sending this, it showed up as junk mail…taking

out a link.

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of fossil.color

I guess I'm looking for advice and input. First

off, I'd like to do my best to stay out of the hospital. I'm going to my GI on Thursday

to discuss medications. I'm thinking he'll probably want to switch me to

Humira, since it doesn't seem like the Remicade is working anymore. I want to

bring up LDN, but I'm pretty positive he'll turn it down. I've just heard how

well it works with SCD, but I'm not sure how long it takes to kick in, and if

it works for only certain cases of Crohn's- maybe less mild?

My advice? Get off those immune suppressants and

get on LDN, transdermal cream (to bypass your gut for easy absorption). My

script reads Naltrexone HCL 6 mg/ml, gel. I get it from CoastalCompounding.com

Go to LDNScience.org I believe there is a link to the Dr.

Jill clinical trials for Crohn’s. Print that out to take to your

GI. And any other pertinent information.

So here are my questions-

1. Now that I'm on Prednisone, I'm assuming that masks any type of food

reaction I could have. Is that correct? And if so, how do I know which foods I

can really tolerate, do I just wait until I can get off prednisone? I think high doses mask symptoms.

2. Does anyone know if certain foods can contribute to fevers (I may have asked

this here before, and if so, I'm sorry)? Before I got into the really bad

flare, I would have times where I would just spike a fever of 103 for a day,

but then it would go away the next day. Has anyone seen any correlation between

fevers and food? I don’t know. I had nightly

low-grade fevers for years (post menopause), even while on SCD. The fevers

stopped once I got on LDN. Immediately.

3. What about the illegals in my meds, do I just deal with that? I was taking

Tylenol to get my fevers down, and I'm sure it has illegals. I'm sure the pred

does too. I don't think I can afford to get everything compounded. Will it just

take longer for me to heal? Meds are necessary at

times. Try not to stress out about them.

4. Should I or should I not be taking supplements and probiotics? I'm still not

sure if the yogurt is working with or against me. Should I just order

probiotics online and lay off the yogurt for a while?

I think I would stop the supplements for awhile.

Maybe try just the legal probiotic, slowly, like 1 every other day or so. I

take Lyosan L. acidophilus capsules (I get them from Lucy’s Kitchen

Shop). The directions on the bottle say to take 2-3/day. That amount was way

too much for me, gave me big time D. So I tried 1 every other day and worked up

to 1/day with no problem. As with everything else, you’ll have to find

the dosage that works for you.

5. If I have to go back to the hospital, does anyone have any suggestions on

how to stay SCD legal? It doesn't seem possible to me, but I'm wondering if

anyone has had any experience with that.

I think the only way to stay SCD legal is to make

& bring all your own food, especially bone broth soups (pureed to within an

inch of their lives), gelatin, etc, whatever easy to digest foods work for you.

Bring legal juice to dilute & drink. I would not rely on Hospital Food!

As an aside, my 2nd

hosp. visit (this was pre-SCD) lasted 4 days. I had nothing to eat for 2 ½ days

because of various tests. So guess what the Hospital Food du’jour was

when I could finally eat? Chicken fried steak with gravy (this is Texas, after

all). OMG I couldn’t believe I had to break my 2 ½ day fast with that.

But I did – ugh. And with dire consequences.

6. Is the Freeda prenatal vitamin legal? I have been taking them, but I think I

read that anything with iron is illegal. Also, does that mean that cooking with

an iron skillet is not ideal? I am anemic so I know I need iron, and I'm

confused on how to get it. Well, the iron in them

is not legal and could possibly be causing problems. I cook in cast iron with

no problem. I was anemic for about the 1st year on SCD but that

resolved itself without me taking iron tablets. You could ask about iron

infusions. I did use cast iron skillets to cook in, still do. And Freeda makes

a SCD Multi-Vitamin.

7. I guess this is OT, but for those of you on LDN, did you get approval

through your actual GI, or did you have to go out on your own? Also, was your

case severe, or do you know if LDN works for moderate to severe Crohn's cases? See the Dr. Jill clinical trials on LDN &

Crohn’s. For me personally, my Crohn’s was severe, I’d had

symptoms for 17 years before being correctly dx’d. My GI said I was one

of the worst cases he’d ever seen (lucky me – what a distinction

<g>). He was all about drugs & surgery and I didn’t know any

better.

I had been on the

SCD for 4 ½ years before learning about LDN. As with the SCD, I wish I had

known about Low Dose Naltrexone years ago. So far the LDN has improved

dramatically my dehydration problem and has resolved the low grade fevers.

Plus, it elevates my mood. Many people with bowel disease are lacking in

endorphins and LDN works to create more endorphins.

I lost my health

ins. when I retired from my job, so I had to find a new doc who would prescribe

LDN. I can pretty much guarantee none of my previous GIs or PCP would prescribe

LDN because they were all about Big pHARMa drugs & surgery and each one

told me diet had nothing to do with my horrible symptoms!

Sorry this post was so long. I'm a bit

overwhelmed right now and want to do all in my power that I can to help myself

heal and get things under control. I appreciate your listening and look forward

to your responses. I’m so sorry – I can

relate to feeling scared and overwhelmed. Try to relax if you can, maybe with

that old stand by the Epsom Salt Bath. Are you able to tolerate some type of

electrolyte drink, either the SCD recipe or E-lyte?

Carol

CD 22 yrs SCD

5 yrs B12 shots LDN cream

_,_._,___

[Guest guest]

At 04:13 PM 3/16/2010, you wrote:

I guess I could ask my husband

to help me bring SCD foods to the hospital. I just feel really guilty

asking him since he works midnights and I know he's exhausted. Hopefully

it doesn't come down to that, but I know he would do it if I asked him.

Husbands are like that!

The nurses at the hospital where I had my cancer surgery allowed us to

bring a batch of stuff and keep it in a refrigerator on the floor. I had

labeled everything with my full name.

I'll re-post a list of the list which was okayed by my surgeon, and which

included clear liquids, thick liquids, soft foods, and normal.

I'd wondered where you got off to... I'm really sorry to hear you were in

the hospital!

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

Hello, the first year was the scariest, the sickest <g> because I couldn't keep anything up or down; with the pred, I stayed sick with basic stuff like the flu/bronchitis, etc.

 

I just got the LDN today so that is unknown.  I just read you can't take LDN with remicade or immuno's like some others have mentioned.  I wish I had an answer on the LDN after it's better or now while it's crucial...I do not have exerience with LDN or the medicines you are on.  I do hope things turn around quickly.  Wish I had any decent advice for you.  Hope things turn around fast for you--and they do.  Did you say you couldn't do the yogurt?  It is full of healing *everything* if you can take it.  Try it with half n half in 1/8 t. if that's all you can take.  That's what I started with but use your own judgement there. 

 

Debbie

 

 

Thanks, Debbie. I appreciate your input. I don't know a lot about LDN, so I'm not sure I'll be prepared enough to discuss it with my GI on Thursday. I'll do the research though. Do you know if you can take prednisone and LDN at the same time? Or Methotrexate? They're both immune suppressors, so I'm thinking probably not. I will start my research.

When you say your first year was the worst, do you mean in your diagnosis or with LDN? I'm not sure if I should wait until my disease is more under control to try LDN...Yes, definitely, I want to stick with SCD. I want to give it a really fair shot to see what it can do.

Thanks again for your help!