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

[Guest guest]

> 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]

I asked my GP and she said ok.  She was familiar with the drug.  I took print outs from LDNScience.org so she could read about it and the doseage.  Make sure you know exactly what you are asking for--doseage, compounded, what to avoid, what to expect, etc.  I think it's better to know what you are getting into and so, she approved it.  A trial anyway to see if it helps.  One prescription with one refill.  My first doctor said 'No Way " so I was very wary but since I had the print-out in my hand, I had to ask. 

 

My first year was the worst.  Absolutely.  I stayed on pred, up and down from 2002 to 2005.  Watch sugars and salts.  Stick with easy foods--not scratchy or hard to digest since pred masks symptoms.

 

Cooking in cast iron is great and legal.

 

If you take iron supplements, it's a fine line so keep an extra eye on everything (sounds like too much I'm sure).

 

Good luck on everything.  I'd stay SCD just because it rules out the worst offenders like dairy, grains, sugar, etc.  The yogurt made a huge difference for me so I hope it does for you.

 

Debbie 40 cd

[Guest guest]

Amber, I hope you feel better soon. I know it must be so frightening right now.

My prayers are with you for a speedy recovery.

PJ

>

> I asked my GP and she said ok. She was familiar with the drug. I took

> print outs from LDNScience.org so she could read about it and the doseage.

> Make sure you know exactly what you are asking for--doseage, compounded,

> what to avoid, what to expect, etc. I think it's better to know what you

> are getting into and so, she approved it. A trial anyway to see if it

> helps. One prescription with one refill. My first doctor said 'No Way " so

> I was very wary but since I had the print-out in my hand, I had to ask.

>

> My first year was the worst. Absolutely. I stayed on pred, up and down

> from 2002 to 2005. Watch sugars and salts. Stick with easy foods--not

> scratchy or hard to digest since pred masks symptoms.

>

> Cooking in cast iron is great and legal.

>

> If you take iron supplements, it's a fine line so keep an extra eye on

> everything (sounds like too much I'm sure).

>

> Good luck on everything. I'd stay SCD just because it rules out the worst

> offenders like dairy, grains, sugar, etc. The yogurt made a huge difference

> for me so I hope it does for you.

>

> Debbie 40 cd

>

[Guest guest]

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!

>

> I asked my GP and she said ok. She was familiar with the drug. I took

> print outs from LDNScience.org so she could read about it and the doseage.

> Make sure you know exactly what you are asking for--doseage, compounded,

> what to avoid, what to expect, etc. I think it's better to know what you

> are getting into and so, she approved it. A trial anyway to see if it

> helps. One prescription with one refill. My first doctor said 'No Way " so

> I was very wary but since I had the print-out in my hand, I had to ask.

>

> My first year was the worst. Absolutely. I stayed on pred, up and down

> from 2002 to 2005. Watch sugars and salts. Stick with easy foods--not

> scratchy or hard to digest since pred masks symptoms.

>

> Cooking in cast iron is great and legal.

>

> If you take iron supplements, it's a fine line so keep an extra eye on

> everything (sounds like too much I'm sure).

>

> Good luck on everything. I'd stay SCD just because it rules out the worst

> offenders like dairy, grains, sugar, etc. The yogurt made a huge difference

> for me so I hope it does for you.

>

> Debbie 40 cd

>

[Guest guest]

Thanks, PJ. I really appreciate it! I always appreciate your input too, even if

I don't get a chance to say so. Hope all is well with you!

Take care,

Amber

>

> Amber, I hope you feel better soon. I know it must be so frightening right

now. My prayers are with you for a speedy recovery.

>

> PJ