Re: Re: Headaches - etc. reason why I am on this list

[Guest guest]

Hi tte,

At the time I was pretty clueless. No one was talking about SCD

or organics at that time – even in the ND arena. When I figured out the

flu like symptoms were caused by the dropping of the Prednisone, I just learned

to come off extra slow. During an episode, time would be the only thing made me

better, but maybe others have better advice than I.

I would think staying hydrated using good natural fluids is very

important.

After about 6/7 years of doing yo-yo doses of Prednisone, it was

recommended that I stay on a low dose of Prednisone all the time, which I did.

I stayed on 10 mg for another 6 years. In 1994, I electively had the Pelvic

Pouch Procedure in order to come off the Prednisone permanently.

My reason for being here now is because I am starting to see

symptoms in my son. He has Celiac Disease dx in April 0f 2010. In the

fall of 2009 he was in hospital diagnosed with Kawasaki Disease. Now our household

has gone completely gluten-free and even for me post surgery, I am noticing I

feel a lot better. I used to have regular headaches, but they are rare now. I

think my son’s GI specialist suspects that I was gluten-intolerant/Celiac

all along.

I’m looking to ramp up our health with even further

improvements to our diet. So far we are gluten, dairy, food colouring and

additive free. Mostly organic and working on removing soy. We do enjoy

some raw meals/snacks. I would like to understand the SCD better. I have

ordered Elaine’s book and plan to read during my upcoming vacation.

I am really impressed with how many speak to making all their

own foods from scratch on this list.

I hope you feel better soon and the whoosiness disappears.

Best wishes,

[Guest guest]

Thank you . I'm already feeling better having gone down to 15mg. Honestly I am now taking half a xanax to cope with the side effects of the dreadful prednisone. I intend to get off it no matter what happens with my colitis. I think if I stick to the diet and stay rested and normal I will be fine. My stomach still gurgles but I have no blood and no mucus. I had avoided this drug for 12 years and I plan on never going on it again. EVER. Hi tte, At the time I was pretty clueless. No one was talking about SCD or organics at that time – even in the ND arena. When I figured out the flu like symptoms were caused by the dropping of the Prednisone, I just learned to come off extra slow. During an episode, time would be the only thing made me better, but maybe others have better advice than I. I would think staying hydrated using good natural fluids is very important. After about 6/7 years of doing yo-yo doses of Prednisone, it was recommended that I stay on a low dose of Prednisone all the time, which I did. I stayed on 10 mg for another 6 years. In 1994, I electively had the Pelvic Pouch Procedure in order to come off the Prednisone permanently. My reason for being here now is because I am starting to see symptoms in my son. He has Celiac Disease dx in April 0f 2010. In the fall of 2009 he was in hospital diagnosed with Kawasaki Disease. Now our household has gone completely gluten-free and even for me post surgery, I am noticing I feel a lot better. I used to have regular headaches, but they are rare now. I think my son’s GI specialist suspects that I was gluten-intolerant/Celiac all along. I’m looking to ramp up our health with even further improvements to our diet. So far we are gluten, dairy, food colouring and additive free. Mostly organic and working on removing soy. We do enjoy some raw meals/snacks. I would like to understand the SCD better. I have ordered Elaine’s book and plan to read during my upcoming vacation. I am really impressed with how many speak to making all their own foods from scratch on this list. I hope you feel better soon and the whoosiness disappears. Best wishes,

[Guest guest]

I don't think so. I went to 15 mg today after feeling like a complete drug addict at 20mg and I now have diarrhea again. How do you function on 20mg and how long have you been on it? Haven't you tried anything else? I'm on 6mp and that worked so well for 7 years. Wow I was lucky but obviously it isn't working now. What else can I try? I'm now doing acupuncture and herbs and anything else I can think of. Hey tte- I am so glad had so much advice and experience to share with you!! I would have written back, but I cannot relate... I haven't been able to break under 20mg prednisone in years! That is one of the main reasons I came to SCD. I am glad showed you a slower way to taper and I really hope you are feeling better soon! Who knows... maybe by the time I am ready to taper I'll be coming to you for advice -JoannaSCD 9/2009, Crohn's 1992, 22.5mg Prednisone>> Thank you . I'm already feeling better having gone down to 15mg.

[Guest guest]

Hi tte (and Joanna),

Have you found a good ND?

I think you need to stay on the higher dose for a bit longer to

stop the flare up before you can taper, unfortunately. You don’t want to

go up and down if you are still having diarrhea and then end up needing an even

higher dose of Prednisone.

I’m curious… are you following the SCD with organic

foods?

After my surgery, (after 13 years with UC), every one to two

years I would still develop “Pouchitis” which would cause me to

take a two week course of strong antibiotics. After my son was born, we tried

to eat more organic foods, but eventually became almost 100% organic – we

are just challenged finding certain ingredients sometimes.

Since going organic, I have not had pouchitis in over 6 years. I

told my surgeon, but his eyes glossed over.

I know the foods are slightly more expensive, but the way I look

at it… is I can’t afford the time off to be ill and on antibiotics.

Besides after taking antibiotics, it takes the gut over a year to recover the

loss of good flora.

Warm regards,

From: BTVC-SCD

[mailto:BTVC-SCD ] On Behalf Of tte Hohnen

I don't think so. I went to 15 mg today after feeling like a

complete drug addict at 20mg and I now have diarrhea again. How do you function

on 20mg and how long have you been on it? Haven't you tried anything else? I'm

on 6mp and that worked so well for 7 years. Wow I was lucky but obviously it

isn't working now. What else can I try? I'm now doing acupuncture and herbs and

anything else I can think of.

Hey tte- I am so glad

had so much advice and experience to share with you!! I would have

written back, but I cannot relate... I haven't been able to break under 20mg

prednisone in years! That is one of the main reasons I came to SCD. I am glad

showed you a slower way to taper and I really hope you are feeling

better soon! Who knows... maybe by the time I am ready to taper I'll be coming

to you for advice

-Joanna

SCD 9/2009, Crohn's 1992, 22.5mg Prednisone

[Guest guest]

What's an ND? I can't do prednisone more than 15 mg. I'm trying to find something else. Can Humira stop flares? I'm not eating veggies right now but I do try to eat organic. Hi tte (and Joanna), Have you found a good ND? I think you need to stay on the higher dose for a bit longer to stop the flare up before you can taper, unfortunately. You don’t want to go up and down if you are still having diarrhea and then end up needing an even higher dose of Prednisone. I’m curious… are you following the SCD with organic foods? After my surgery, (after 13 years with UC), every one to two years I would still develop “Pouchitis” which would cause me to take a two week course of strong antibiotics. After my son was born, we tried to eat more organic foods, but eventually became almost 100% organic – we are just challenged finding certain ingredients sometimes. Since going organic, I have not had pouchitis in over 6 years. I told my surgeon, but his eyes glossed over. I know the foods are slightly more expensive, but the way I look at it… is I can’t afford the time off to be ill and on antibiotics. Besides after taking antibiotics, it takes the gut over a year to recover the loss of good flora. Warm regards, From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of tte HohnenI don't think so. I went to 15 mg today after feeling like a complete drug addict at 20mg and I now have diarrhea again. How do you function on 20mg and how long have you been on it? Haven't you tried anything else? I'm on 6mp and that worked so well for 7 years. Wow I was lucky but obviously it isn't working now. What else can I try? I'm now doing acupuncture and herbs and anything else I can think of. Hey tte- I am so glad had so much advice and experience to share with you!! I would have written back, but I cannot relate... I haven't been able to break under 20mg prednisone in years! That is one of the main reasons I came to SCD. I am glad showed you a slower way to taper and I really hope you are feeling better soon! Who knows... maybe by the time I am ready to taper I'll be coming to you for advice -JoannaSCD 9/2009, Crohn's 1992, 22.5mg Prednisone

[Guest guest]

Hi Joanna,I can't actually function on 20mg and I feel like throwing up and have panic attacks so for me it's worse than having diarrhea. Can you be on Humira and Prednisone at the same time I wonder? Anyway, I'm on 15mg which I can stay on. I have diarrhea now but am on the diet and using rowasa, colozal and 6mp. It's weird the mornings are better for me than the evenings. I don't have bleeding though right now so I'm not going to go back to the higher pred. I can't believe that no one can really fix this. I was so lucky to have been fine for 7 years. \Even on the diet you can't taper on the prednisone? I bet that has to do with being on it for so long and I wonder if you did alternative medicines it would help. Anyway I call my doctor every day (who is just a stand in doctor) and I'm sure he thinks I'm a total nut job but I don't care. I know my body and I just need his help to fix this again. Ugh this is such a life stopper.Thanks for your e mail.tte I'm not sure what "ND" is either (naturopath doc?)... To : I do most of my stuff organic and I love finding others who believe in it! I figure even if it's not *necessary* (like they say fruits/veggies with thicker skins are of less concern), I still like supporting the farming methods. I also only get my meat and dairy from local farmers now. It feels really good to support the local industry (I live in Ohio).To tte: Well, I'm not happy to say that I've been able to be on prednisone for so long, it's just been how my personal journey has played out. 18 years ago when I was diagnosed I was put on HUGE doses (80mg oral- can you imagine? I was 17 years old and weighed 85lbs... I would never allow that now). I've never been able to totally ween off. Not because of my body being dependent on it, but because every time I dip below 20mg my symptoms get worse. My doctors have always felt that it would be better to stay on 20 for long term than to have worse symptoms. At this point, I just want to be off it- I've suffered every possible side effect and my bones aren't going to just up and get better on their own. tte, you asked about Humira? I think a lot of people here have tried it and had some success. If it can help you get off the prednisone, I think it's worth a shot. I have tried just about every medication: Asacol, 6mp, Remicade, Humira, Cimzia, Methotrexate. Most seem to help me for about 3-6 months and then I just return to my normal baseline of diarrhea and bleeding.'s advice about going slow is really dead on. So what if it takes 2 months to go down from 20 to 15? Just take your time And I think the fact that you are implementing SCD is going to help you win this fight and get off of it!-JoannaSCD 9/2009, Crohn's 1992, 22.5mg Prednisone>> What's an ND? I can't do prednisone more than 15 mg. I'm trying to > find something else. Can Humira stop flares? I'm not eating veggies > right now but I do try to eat organic.

[Guest guest]

Hi tte and Joanna,

Yes, I did mean a Naturopath.

I have been finding it somewhat helpful for my son. But I think,

what you are eating is most important.

Sorry, I don’t know much about Humira. Actually, it surprises

me that they have gone to chemo drugs (6mp, Methotrexate, etc.) as

immunosuppression for IBD patients now. During my UC there was only Asacol ,

Prednisone and ASA enemas.

I have yet to see an improvement in the Chrohs and Colitis stats

– yet they are using much stronger meds now than 20 years ago. And actually,

the disease is much more prevalent in children now than 20 years ago. Why is

this? I can’t help but think that we are changing our diet for the worse.

When I was a kid, there was one icsle of frozen foods – now it is half

the grocery store.

J

From: BTVC-SCD

[mailto:BTVC-SCD ] On Behalf Of tte Hohnen

What's an ND? I can't do prednisone more than 15 mg. I'm

trying to find something else. Can Humira stop flares? I'm not eating

veggies right now but I do try to eat organic.

[Guest guest]

Sorry, I meant crohns.

I should know better by now.

J

[Guest guest]

I have UC. It's definitely the food we eat and the stress we are under. I'm from England and am pretty sure if I hadn't moved to America I probably wouldn't have this disease although I do think if you have a A type personality it can be a contributing factor. The problem is we don't know what is in our food anymore and the laws here about genetically modified foods are not as strict as they are in Europe. Hi tte and Joanna, Yes, I did mean a Naturopath. I have been finding it somewhat helpful for my son. But I think, what you are eating is most important. Sorry, I don’t know much about Humira. Actually, it surprises me that they have gone to chemo drugs (6mp, Methotrexate, etc.) as immunosuppression for IBD patients now. During my UC there was only Asacol , Prednisone and ASA enemas. I have yet to see an improvement in the Chrohs and Colitis stats – yet they are using much stronger meds now than 20 years ago. And actually, the disease is much more prevalent in children now than 20 years ago. Why is this? I can’t help but think that we are changing our diet for the worse. When I was a kid, there was one icsle of frozen foods – now it is half the grocery store. J From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of tte HohnenWhat's an ND? I can't do prednisone more than 15 mg. I'm trying to find something else. Can Humira stop flares? I'm not eating veggies right now but I do try to eat organic.

[Guest guest]

Hi tte,

I agree, Europe has stricter rules around foods and production,

but still not perfect. Honestly… I’m not so sure it is stress. I

think, the crap foods we eat when under stress and rushed is more likely the

problem.

If you are eating certified organic foods – the source is

supposed to be non-GMO. If you are eating any conventional corn or soy you are

guaranteed to be eating GMO. (I think there is no soy on the SCD diet, but not

sure about corn?)

There is no simple solution to what the FDA allows.

I have to keep my son away from any medications because most of

them have fillers with soy, wheat etc. Prednisone has dairy in it. My son is

anaphylactic and Celiac. It shocks me that pharmacists cannot advise what the

ingredients are in their meds. To me that should be part of their service.

I have UC. It's definitely the food we eat and the stress we

are under. I'm from England and am pretty sure if I hadn't moved to America I

probably wouldn't have this disease although I do think if you have a A type

personality it can be a contributing factor. The problem is we don't know what is

in our food anymore and the laws here about genetically modified foods are not

as strict as they are in Europe.

[Guest guest]

At 07:38 AM 8/10/2010, you wrote:

I'm now doing acupuncture and

herbs and anything else I can think of.

Be careful of the herbs you are taking. In many cases, they contain

mucilage, which many people think is " soothing " to the guts but

which actually contains a large amount of starch which feeds the bad

bacteria.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

Babette the Foundling Beagle

[Guest guest]

> I don't think so. I went to 15 mg today after feeling like a complete> drug addict at 20mg and I now have diarrhea again. How do you function> on 20mg and how long have you been on it? Haven't you tried anything> else? I'm on 6mp and that worked so well for 7 years. Wow I was lucky> but obviously it isn't working now. What else can I try?LDN.n______________________________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]

thank you. You know I'm going to stick with what I'm on for the moment. 15 is manageable although I stumble around like I'm drunk most of the time. I will do it slowly though as you suggest. I'd like to just add one thing about decreasing prednisone. Now, I'm not on prednisone and I don't think I've ever had it, but I have been on hydrocortisone most of my life and it's unlikely I will ever get off it. But there have been a few periods where I could decrease it. When I did, I had to decrease something like 1.5mg per MONTH. And my doctor says my hydrocortisone is something like one seventh as strong as Prednisone. In other words, I was decreasing practically molecule by molecule but it was the only way I could make it work. So what I'm really trying to say is, I don't think there's any such thing as decreasing too slowly, really. My nurse friend says to make changes to meds so slowly the body doesn't realize you are doing it. So, I would recommend next time you decrease, do it much much slower and see if that will go more smoothly. I'd go back up now, if it were me. What's an ND? I can't do prednisone more than 15 mg. I'm trying to> find something else. Can Humira stop flares? I'm not eating veggies> right now but I do try to eat organic.

[Guest guest]

tte, are you still feeling unwell tonight? You mentioned

that you feel like you are drunk all the time. If you are still unwell after

weaning off the Prednisone? I thought you were having more of an immediate

reaction, but if you are still feeling really bad two days or more in a row, it

might be something else.

Have you considered that it may be the 6 mp instead? Dizziness

is one of the side effects.

[Guest guest]

No it's not the 6mp. That was a wonder drug for me. Felt like I didn't have the disease at all. I'm actually feeling much, much better today and I'm on the second day of 15 mg. Much less wooziness and no queaziness which I think it's the side effect I get on it. My gurling is better but I do now have water stool/diarrhea which I didn't have on 20mg on day. I'm hoping that will get better with the rowasa. What do you think? tte, are you still feeling unwell tonight? You mentioned that you feel like you are drunk all the time. If you are still unwell after weaning off the Prednisone? I thought you were having more of an immediate reaction, but if you are still feeling really bad two days or more in a row, it might be something else. Have you considered that it may be the 6 mp instead? Dizziness is one of the side effects.

[Guest guest]

If you have been on the 6 mp for awhile, you would know if you

had any problems with it by now.

If you are feeling better today the wooziness was most likely

because you dropped the Prednisone by 5mg so fast.

Now you know… if you ever end up on it again and for the rest of

your taper.

Best wishes,

From: BTVC-SCD

[mailto:BTVC-SCD ] On Behalf Of tte Hohnen

Sent: August-10-10 9:27 PM

To: BTVC-SCD

Subject: Re: Re: Headaches - etc. reason why I am on this

list

No it's not the 6mp. That was a wonder drug for me. Felt

like I didn't have the disease at all.

I'm actually feeling much, much better today and I'm on the

second day of 15 mg. Much less wooziness and no queaziness which I think it's

the side effect I get on it. My gurling is better but I do now have water

stool/diarrhea which I didn't have on 20mg on day. I'm hoping that will get

better with the rowasa. What do you think?

[Guest guest]

It wasn't dropping it down it was putting it back up by 5 mg that made me feel terribly ill. For me the side effects of the prednisone was worse than the UC symptoms. If you have been on the 6 mp for awhile, you would know if you had any problems with it by now. If you are feeling better today the wooziness was most likely because you dropped the Prednisone by 5mg so fast. Now you know… if you ever end up on it again and for the rest of your taper. Best wishes, From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of tte HohnenSent: August-10-10 9:27 PMTo: BTVC-SCD Subject: Re: Re: Headaches - etc. reason why I am on this list No it's not the 6mp. That was a wonder drug for me. Felt like I didn't have the disease at all. I'm actually feeling much, much better today and I'm on the second day of 15 mg. Much less wooziness and no queaziness which I think it's the side effect I get on it. My gurling is better but I do now have water stool/diarrhea which I didn't have on 20mg on day. I'm hoping that will get better with the rowasa. What do you think? <image001.png>