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.

Especially if you were flaring, that sounds like a flare-fever.

if prior to the fever, a week or so before, you had experienced

a period of change in bowel behavior, from D or frequency to C or near

C, or the reverse, C to D, then that is likely to be a fever that you get

rid from shedding the bacterial/yeast/fungi - and is caused by

die off toxins.

>

> 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.

If you have the budget for it, you might want to hire someone to help you.

A lot of people make a liquid diet for hospital stays - lots of savory

smoothies,

with, say, a chicken soup base and some veggies added and then pureed.

Misty has a good zucchini soup recipe. Maybe she'll repost it.

I have a really easy to make savory smoothie puree made from diluted tomato

juice,

half an avocado, some parsley or cilantro, a bit of salt, lemon or lime or both,

and,

if you can tolerate it, optional cayenne or tabasco or jalapeno, and some

yogurt.

It's a snap to make. And it's healthy and nournishing.

> 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.

For hospital stays, make foods that are really easy to digest.

> 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!)

Don't sweat it - who hasn't made a typo? Heck, sometimes I have

word typos where I type one word when I meant another completely.

Mara

[Guest guest]

Prednison and LDN depends. You can take 10mg Prednison or less with LDN.

More than that you need to wean down to 10.

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.

[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.The Remicade itself could be causing your fevers. I hate to say it, but the list of Remicade's nasty side-effects is long (and many doctors avoid informing patients of that). Fever is one of them (though as with all drug side effects, the percentages of people who get specific side-effects varies).I'm rather surprised you were given Methotrexate, from what I've read about it in different medical sources. Do you know what your doctor's thinking behind it is? It's usually used to treat breast, lung or a few other types of cancer, as it can interfere with growth of cancer cells -- but it's a really heavy-duty drug. So no surprise it, too, has some very serious side effects.I also have Crohn's (for 30+ years & two surgeries) but in that time have refused all the immuno-suppressant drugs (not always to my doctor's liking), as I was already very susceptible to fevers and infection. That's not true any longer, and LDN has helped tremendously for that. I would also urge you to read up on LDN. If you're going to take a drug, it's by far the most efficacious and has no serious side effects at all.  Along with SCD it has done wonders for me (including for other auto-immune symptoms, like my joint pain and my asthma). You can take it as long as the amount of prednisone you're taking is relatively low (not more than 10 mg/day).  n>> 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? And if so, how do I know which > foods I can really tolerate, do I just wait until I can get off > prednisone?>> 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?>> 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?>> 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?>> 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.>> 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.>> 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?>> 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.>> Take care,>> Amber>-- ______________________________A funny, touching gift book for cat lovers. Signed copies, free shipping (U.S., reduced elsewhere): Confessions of  a Cataholic: My Life With the 10 Cats Who Caused My Addiction by n Van Til www.wordpowerpublishing.com  

[Guest guest]

Thanks for your input, Debbie. I'm not sure about the yogurt. I've been eating

it anyways, but I can't tell if it makes things worse or better. I haven't

seemed to have found a food/symptom connection yet.

Hope the LDN works well for you. I'm going to ask my GI about it tomorrow, but I

have serious doubts he'll even consider it.

Thanks,

Amber

>

> >

> >

> > 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!

> >

>

[Guest guest]

Thanks, Mara. Yes, I think they were flare fevers. Thanks for the info on the

smoothies. I'm going to have to print all this info out, just in case. Hopefully

it doesn't come to that, but you gave some good ideas.

Thanks!

Amber

>

> > 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.

>

> Especially if you were flaring, that sounds like a flare-fever.

>

> if prior to the fever, a week or so before, you had experienced

> a period of change in bowel behavior, from D or frequency to C or near

> C, or the reverse, C to D, then that is likely to be a fever that you get

> rid from shedding the bacterial/yeast/fungi - and is caused by

> die off toxins.

>

>

> >

> > 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.

>

> If you have the budget for it, you might want to hire someone to help you.

>

> A lot of people make a liquid diet for hospital stays - lots of savory

smoothies,

> with, say, a chicken soup base and some veggies added and then pureed.

>

> Misty has a good zucchini soup recipe. Maybe she'll repost it.

>

> I have a really easy to make savory smoothie puree made from diluted tomato

juice,

> half an avocado, some parsley or cilantro, a bit of salt, lemon or lime or

both, and,

> if you can tolerate it, optional cayenne or tabasco or jalapeno, and some

yogurt.

>

> It's a snap to make. And it's healthy and nournishing.

>

>

> > 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.

>

> For hospital stays, make foods that are really easy to digest.

>

> > 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!)

>

> Don't sweat it - who hasn't made a typo? Heck, sometimes I have

> word typos where I type one word when I meant another completely.

>

> Mara

>

[Guest guest]

Thanks, Marilyn! It's good do know that nurses are open to you keeping things in

their refrigerators.

Yes, husbands are good like that. Sounds like you have a great one, and I'm very

blessed to have mine too. I may discuss with him the specifics of the diet in

case I have to go back- hopefully not.

Amber

> >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]

I will keep that in mind. Thanks, !

Amber

>

> Prednison and LDN depends. You can take 10mg Prednison or less with

> LDN. More than that you need to wean down to 10.

>

>

>

> 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.

>

[Guest guest]

> I am the same way as far as wanting to know that I tried my best to fight this

disease. Sometimes I feel a little silly for being on a " special diet " when

other people eat whatever they want, but in my mind, I want to know that I've

tried all that I could in my power to heal myself instead of just letting myself

rely on doctors and drugs

doctors and drugs don't work for everyone. I was on meds for several years -

and for the

most part, they didn't do much at all for me - including remicade.

I'm sure I never would have taken a non medical approach if the drugs worked -

but they

didn't in my case. And I think that's the reason, one way or another, a lot of

us end up

here.

This is not a disease-complex that medical science has yet conquered.

Mara