Re: Thinking of terminating the diet

[Guest guest]

Hi ,

I am new the diet but I noticed that a lot of the responses to your questions

involved allergy-triggered symptoms.

I have had UC since last June and avoided meds until December when it got really

bad and I needed a blood transfusion and prednisone 40mg. My bleeding didn't

stop until I was on mesalamine, which it turned out I was allergic to and broke

out in a " drug rash. " When I stopped that I was put on allegra (day and night)

and my bleeding did not return until the day after I stopped taking allegra,

since my rash was mostly gone and flaking off.

My bleeding got better but then worse again when I tapered off the prednisone,

never completely going away. I asked my naturopath (who put me on the diet) if

she thought taking the allegra again would help. She said try it so I did. I had

gone back up to 5mg prednisone three days in a row, with fluctuating symptoms -

one day 2bms with blood, next day 4. I took the allegra last night and have had

only 1bm today (with blood still), and feel much better physically and have a

little more energy.

It would make sense that if sensitivies and allergies trigger symptoms, that

antihistamines could help with those reactions. I'm not sure if other people

have experimented with this yet, but it was a new idea to both my naturopath and

my gastroenterologist.

I will post later if it turns out not to be working. Just a thought for now.

Kat

27

Dx UC June 2009

SCD since Feb 2010

Prednisone, allegra, rhodiola rosea, other suppliments

>

>

>

> Hello All,

>

>

>

> I in no way want to stir doubt in anyone's minds.  I'm sorry if this email

does this.  I just really need some feedback at this point.

>

>

>

> I've been grappling with some questions to which I cannot think of good

answers.  I'd value the feedback from this group.  I have definitely seen some

improvement with this diet, but have not had a complete remission yet.  I

haven't expected one yet though, as I've only been on the diet for 4 1/2 months.

>

>

>

> I've had UC symptoms for approximately 11 years and have had an official

diagnosis for approximately 6 years.  Shortly after my dx and starting

medication I had a complete remission.  I was not on the diet at this time. 

This remission lasted 2-3 years.  For some reason the idea just hit me the

other day.  If this diet is good for this illness, why did I go into remission

yet eat all the things that I shouldn't have?  My GI doctor told me years ago

that there is no proof about diet, but said that I should certainly avoid

anything that seemed to aggrivate it.  He did mention that the illness will go

on a natural increase and decrease in symptoms and periods of remission. 

What's to say that when one is newly diagnosed, they immediately go onto the

diet and then experience a natural remission, but attribute it to the diet? 

Has anyone been on this diet for 10 years or so and can say that they've

consistently experienced decreased symptoms that can't be attributed to the

natural cycle of the illness?

>

>

>

> Some other questions that I have:  Perhaps this diet is good for getting rid

of the extra bacteria in the GI tract.  However, does that do anything to stop

my immune system from attacking my colon?  Perhaps the bacteria is a defense

mechanism that protects the tissue?

>

>

>

> No surprise, I'm experiencing a flare right now.  I just wanted soft foods to

eat, but all that was available to me at my home was fruit, vegetables, white

beans, nuts, eggs, and meat.  Not comfort foods and mostly things harsh on

one's symptoms.  I know that I can go back to chicken, chicken soup, and cooked

carrots.  But rice seems like it would be light on my system.

>

>

>

> I value this listserv group and value your thoughts.  I'm not going off the

diet yet, but thinking about it.  I have lost about 15 pounds on this diet,

which I'm very happy about.  I've finally gone from chunky to slendor and don't

want to go back to chunky.  I just appreciate your thoughts right now.

>

>

>

> UC 11 years, dx for 6

>

> On Colazol 3 750mg capsules 3Xdaily and nightly rowasa enemas

>

[Guest guest]

Hi ,

I am new the diet but I noticed that a lot of the responses to your questions

involved allergy-triggered symptoms.

I have had UC since last June and avoided meds until December when it got really

bad and I needed a blood transfusion and prednisone 40mg. My bleeding didn't

stop until I was on mesalamine, which it turned out I was allergic to and broke

out in a " drug rash. " When I stopped that I was put on allegra (day and night)

and my bleeding did not return until the day after I stopped taking allegra,

since my rash was mostly gone and flaking off.

My bleeding got better but then worse again when I tapered off the prednisone,

never completely going away. I asked my naturopath (who put me on the diet) if

she thought taking the allegra again would help. She said try it so I did. I had

gone back up to 5mg prednisone three days in a row, with fluctuating symptoms -

one day 2bms with blood, next day 4. I took the allegra last night and have had

only 1bm today (with blood still), and feel much better physically and have a

little more energy.

It would make sense that if sensitivies and allergies trigger symptoms, that

antihistamines could help with those reactions. I'm not sure if other people

have experimented with this yet, but it was a new idea to both my naturopath and

my gastroenterologist.

I will post later if it turns out not to be working. Just a thought for now.

Kat

27

Dx UC June 2009

SCD since Feb 2010

Prednisone, allegra, rhodiola rosea, other suppliments

>

>

>

> Hello All,

>

>

>

> I in no way want to stir doubt in anyone's minds.  I'm sorry if this email

does this.  I just really need some feedback at this point.

>

>

>

> I've been grappling with some questions to which I cannot think of good

answers.  I'd value the feedback from this group.  I have definitely seen some

improvement with this diet, but have not had a complete remission yet.  I

haven't expected one yet though, as I've only been on the diet for 4 1/2 months.

>

>

>

> I've had UC symptoms for approximately 11 years and have had an official

diagnosis for approximately 6 years.  Shortly after my dx and starting

medication I had a complete remission.  I was not on the diet at this time. 

This remission lasted 2-3 years.  For some reason the idea just hit me the

other day.  If this diet is good for this illness, why did I go into remission

yet eat all the things that I shouldn't have?  My GI doctor told me years ago

that there is no proof about diet, but said that I should certainly avoid

anything that seemed to aggrivate it.  He did mention that the illness will go

on a natural increase and decrease in symptoms and periods of remission. 

What's to say that when one is newly diagnosed, they immediately go onto the

diet and then experience a natural remission, but attribute it to the diet? 

Has anyone been on this diet for 10 years or so and can say that they've

consistently experienced decreased symptoms that can't be attributed to the

natural cycle of the illness?

>

>

>

> Some other questions that I have:  Perhaps this diet is good for getting rid

of the extra bacteria in the GI tract.  However, does that do anything to stop

my immune system from attacking my colon?  Perhaps the bacteria is a defense

mechanism that protects the tissue?

>

>

>

> No surprise, I'm experiencing a flare right now.  I just wanted soft foods to

eat, but all that was available to me at my home was fruit, vegetables, white

beans, nuts, eggs, and meat.  Not comfort foods and mostly things harsh on

one's symptoms.  I know that I can go back to chicken, chicken soup, and cooked

carrots.  But rice seems like it would be light on my system.

>

>

>

> I value this listserv group and value your thoughts.  I'm not going off the

diet yet, but thinking about it.  I have lost about 15 pounds on this diet,

which I'm very happy about.  I've finally gone from chunky to slendor and don't

want to go back to chunky.  I just appreciate your thoughts right now.

>

>

>

> UC 11 years, dx for 6

>

> On Colazol 3 750mg capsules 3Xdaily and nightly rowasa enemas

>

[Guest guest]

> I value this listserv group and value your thoughts. I'm not going off the diet yet, but thinking about it. I have lost about 15 pounds on this diet, which I'm very happy about. I've finally gone from chunky to slendor and don't want to go back to chunky. I just appreciate your thoughts right now. Hi ,You say in your post that you have had some improvement on the diet, but not enough to convince you it's the diet, and not the natural course of the illness? For me, just knowing that this is a healthier way to eat is enough to keep me on the diet, whether if affects my disease long term or not (although I"m sure it will). I don't know what your diet was like before this, but don't you feel better knowing you're feeding your body pure, natural foods?As far as your question about whether the diet stops your body from attacking your colon. I think the theory is that the bacteria produce toxins that harm your colon, so your body wants to get rid of them. However, the tissues/substance that makes up the bacteria is very similar to what makes up the lining of our intestine. Your immune cells get confused, and start attacking both the bacteria and your colon. Therefore, if you restore the balance of bacteria, your body won't feel a need to fight it, and therefore will stop accidentally fighting your intestinal lining. (Somebody correct me if I'm wrong on this)A question I think of is this: even if the diet isn't enough to put you in full remission by itself, would you really be better off WITHOUT the diet? Also, do you feel like your disease will be able to be controlled long term with only meds? Four/five months is a very short time to be on the diet, especially short for you to already be eating things like beans, which are very hard for most to digest. Also, if you feel so much happier about the weight you're at on this diet, why not stay on it for that alone? It seems that just by dropping those 15 pounds, your body is telling you that it likes this new way of eating better. Even if you do decide to go off the diet, remember we'll always be here if you decide to come back! Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 50 mg 1x per dayPrednisone 40 mg 1x per day

[Guest guest]

> I value this listserv group and value your thoughts. I'm not going off the diet yet, but thinking about it. I have lost about 15 pounds on this diet, which I'm very happy about. I've finally gone from chunky to slendor and don't want to go back to chunky. I just appreciate your thoughts right now. Hi ,You say in your post that you have had some improvement on the diet, but not enough to convince you it's the diet, and not the natural course of the illness? For me, just knowing that this is a healthier way to eat is enough to keep me on the diet, whether if affects my disease long term or not (although I"m sure it will). I don't know what your diet was like before this, but don't you feel better knowing you're feeding your body pure, natural foods?As far as your question about whether the diet stops your body from attacking your colon. I think the theory is that the bacteria produce toxins that harm your colon, so your body wants to get rid of them. However, the tissues/substance that makes up the bacteria is very similar to what makes up the lining of our intestine. Your immune cells get confused, and start attacking both the bacteria and your colon. Therefore, if you restore the balance of bacteria, your body won't feel a need to fight it, and therefore will stop accidentally fighting your intestinal lining. (Somebody correct me if I'm wrong on this)A question I think of is this: even if the diet isn't enough to put you in full remission by itself, would you really be better off WITHOUT the diet? Also, do you feel like your disease will be able to be controlled long term with only meds? Four/five months is a very short time to be on the diet, especially short for you to already be eating things like beans, which are very hard for most to digest. Also, if you feel so much happier about the weight you're at on this diet, why not stay on it for that alone? It seems that just by dropping those 15 pounds, your body is telling you that it likes this new way of eating better. Even if you do decide to go off the diet, remember we'll always be here if you decide to come back! Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 50 mg 1x per dayPrednisone 40 mg 1x per day

[Guest guest]

- I would like to add to these great responses, that 4 1/2 months can not

undo 11 years of illness. I believe the benefits from SCD are in the long run.

Yes, people feel better after 4 1/2 months, but the first year, I've heard, has

it's ups and downs. I've been on SCD 11 months, and am feeling much better than

I did at 4 1/2 months. I believe it is a slow process, but well worth the

effort.

PJ

>

> > > I value this listserv group and value your thoughts. I'm not

> > going off the diet yet, but thinking about it. I have lost about

> > 15 pounds on this diet, which I'm very happy about. I've finally

> > gone from chunky to slendor and don't want to go back to chunky. I

> > just appreciate your thoughts right now.

>

>

> Hi ,

>

> You say in your post that you have had some improvement on the diet,

> but not enough to convince you it's the diet, and not the natural

> course of the illness? For me, just knowing that this is a healthier

> way to eat is enough to keep me on the diet, whether if affects my

> disease long term or not (although I " m sure it will). I don't know

> what your diet was like before this, but don't you feel better knowing

> you're feeding your body pure, natural foods?

>

> As far as your question about whether the diet stops your body from

> attacking your colon. I think the theory is that the bacteria produce

> toxins that harm your colon, so your body wants to get rid of them.

> However, the tissues/substance that makes up the bacteria is very

> similar to what makes up the lining of our intestine. Your immune

> cells get confused, and start attacking both the bacteria and your

> colon. Therefore, if you restore the balance of bacteria, your body

> won't feel a need to fight it, and therefore will stop accidentally

> fighting your intestinal lining. (Somebody correct me if I'm wrong on

> this)

>

> A question I think of is this: even if the diet isn't enough to put

> you in full remission by itself, would you really be better off

> WITHOUT the diet? Also, do you feel like your disease will be able to

> be controlled long term with only meds? Four/five months is a very

> short time to be on the diet, especially short for you to already be

> eating things like beans, which are very hard for most to digest.

> Also, if you feel so much happier about the weight you're at on this

> diet, why not stay on it for that alone? It seems that just by

> dropping those 15 pounds, your body is telling you that it likes this

> new way of eating better.

>

> Even if you do decide to go off the diet, remember we'll always be

> here if you decide to come back!

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> Azathioprine 50 mg 1x per day

> Prednisone 40 mg 1x per day

>

[Guest guest]

- I would like to add to these great responses, that 4 1/2 months can not

undo 11 years of illness. I believe the benefits from SCD are in the long run.

Yes, people feel better after 4 1/2 months, but the first year, I've heard, has

it's ups and downs. I've been on SCD 11 months, and am feeling much better than

I did at 4 1/2 months. I believe it is a slow process, but well worth the

effort.

PJ

>

> > > I value this listserv group and value your thoughts. I'm not

> > going off the diet yet, but thinking about it. I have lost about

> > 15 pounds on this diet, which I'm very happy about. I've finally

> > gone from chunky to slendor and don't want to go back to chunky. I

> > just appreciate your thoughts right now.

>

>

> Hi ,

>

> You say in your post that you have had some improvement on the diet,

> but not enough to convince you it's the diet, and not the natural

> course of the illness? For me, just knowing that this is a healthier

> way to eat is enough to keep me on the diet, whether if affects my

> disease long term or not (although I " m sure it will). I don't know

> what your diet was like before this, but don't you feel better knowing

> you're feeding your body pure, natural foods?

>

> As far as your question about whether the diet stops your body from

> attacking your colon. I think the theory is that the bacteria produce

> toxins that harm your colon, so your body wants to get rid of them.

> However, the tissues/substance that makes up the bacteria is very

> similar to what makes up the lining of our intestine. Your immune

> cells get confused, and start attacking both the bacteria and your

> colon. Therefore, if you restore the balance of bacteria, your body

> won't feel a need to fight it, and therefore will stop accidentally

> fighting your intestinal lining. (Somebody correct me if I'm wrong on

> this)

>

> A question I think of is this: even if the diet isn't enough to put

> you in full remission by itself, would you really be better off

> WITHOUT the diet? Also, do you feel like your disease will be able to

> be controlled long term with only meds? Four/five months is a very

> short time to be on the diet, especially short for you to already be

> eating things like beans, which are very hard for most to digest.

> Also, if you feel so much happier about the weight you're at on this

> diet, why not stay on it for that alone? It seems that just by

> dropping those 15 pounds, your body is telling you that it likes this

> new way of eating better.

>

> Even if you do decide to go off the diet, remember we'll always be

> here if you decide to come back!

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> Azathioprine 50 mg 1x per day

> Prednisone 40 mg 1x per day

>

[Guest guest]

You had a transfusion and they only gave you 40 mgs of pred? That seems like a

really small amount. I mean every time I was hospitalized I was on higher than

60 mgs (IV). That's terrible but also odd about the allergy though especially

because prednisone blocks allergy symptoms (one reason I had to wait to get off

it before doing a patch test). I imagine that means your allergy is extremely

bad if it's still happening even while on the pred?

Stacey

> >

> >

> >

> > Hello All,

> >

> >

> >

> > I in no way want to stir doubt in anyone's minds.  I'm sorry if this email

does this.  I just really need some feedback at this point.

> >

> >

> >

> > I've been grappling with some questions to which I cannot think of good

answers.  I'd value the feedback from this group.  I have definitely seen some

improvement with this diet, but have not had a complete remission yet.  I

haven't expected one yet though, as I've only been on the diet for 4 1/2 months.

> >

> >

> >

> > I've had UC symptoms for approximately 11 years and have had an official

diagnosis for approximately 6 years.  Shortly after my dx and starting

medication I had a complete remission.  I was not on the diet at this time. 

This remission lasted 2-3 years.  For some reason the idea just hit me the

other day.  If this diet is good for this illness, why did I go into remission

yet eat all the things that I shouldn't have?  My GI doctor told me years ago

that there is no proof about diet, but said that I should certainly avoid

anything that seemed to aggrivate it.  He did mention that the illness will go

on a natural increase and decrease in symptoms and periods of remission. 

What's to say that when one is newly diagnosed, they immediately go onto the

diet and then experience a natural remission, but attribute it to the diet? 

Has anyone been on this diet for 10 years or so and can say that they've

consistently experienced decreased symptoms that can't be attributed to the

natural cycle of the illness?

> >

> >

> >

> > Some other questions that I have:  Perhaps this diet is good for getting

rid of the extra bacteria in the GI tract.  However, does that do anything to

stop my immune system from attacking my colon?  Perhaps the bacteria is a

defense mechanism that protects the tissue?

> >

> >

> >

> > No surprise, I'm experiencing a flare right now.  I just wanted soft foods

to eat, but all that was available to me at my home was fruit, vegetables, white

beans, nuts, eggs, and meat.  Not comfort foods and mostly things harsh on

one's symptoms.  I know that I can go back to chicken, chicken soup, and cooked

carrots.  But rice seems like it would be light on my system.

> >

> >

> >

> > I value this listserv group and value your thoughts.  I'm not going off the

diet yet, but thinking about it.  I have lost about 15 pounds on this diet,

which I'm very happy about.  I've finally gone from chunky to slendor and don't

want to go back to chunky.  I just appreciate your thoughts right now.

> >

> >

> >

> > UC 11 years, dx for 6

> >

> > On Colazol 3 750mg capsules 3Xdaily and nightly rowasa enemas

> >

>

[Guest guest]

You had a transfusion and they only gave you 40 mgs of pred? That seems like a

really small amount. I mean every time I was hospitalized I was on higher than

60 mgs (IV). That's terrible but also odd about the allergy though especially

because prednisone blocks allergy symptoms (one reason I had to wait to get off

it before doing a patch test). I imagine that means your allergy is extremely

bad if it's still happening even while on the pred?

Stacey

> >

> >

> >

> > Hello All,

> >

> >

> >

> > I in no way want to stir doubt in anyone's minds.  I'm sorry if this email

does this.  I just really need some feedback at this point.

> >

> >

> >

> > I've been grappling with some questions to which I cannot think of good

answers.  I'd value the feedback from this group.  I have definitely seen some

improvement with this diet, but have not had a complete remission yet.  I

haven't expected one yet though, as I've only been on the diet for 4 1/2 months.

> >

> >

> >

> > I've had UC symptoms for approximately 11 years and have had an official

diagnosis for approximately 6 years.  Shortly after my dx and starting

medication I had a complete remission.  I was not on the diet at this time. 

This remission lasted 2-3 years.  For some reason the idea just hit me the

other day.  If this diet is good for this illness, why did I go into remission

yet eat all the things that I shouldn't have?  My GI doctor told me years ago

that there is no proof about diet, but said that I should certainly avoid

anything that seemed to aggrivate it.  He did mention that the illness will go

on a natural increase and decrease in symptoms and periods of remission. 

What's to say that when one is newly diagnosed, they immediately go onto the

diet and then experience a natural remission, but attribute it to the diet? 

Has anyone been on this diet for 10 years or so and can say that they've

consistently experienced decreased symptoms that can't be attributed to the

natural cycle of the illness?

> >

> >

> >

> > Some other questions that I have:  Perhaps this diet is good for getting

rid of the extra bacteria in the GI tract.  However, does that do anything to

stop my immune system from attacking my colon?  Perhaps the bacteria is a

defense mechanism that protects the tissue?

> >

> >

> >

> > No surprise, I'm experiencing a flare right now.  I just wanted soft foods

to eat, but all that was available to me at my home was fruit, vegetables, white

beans, nuts, eggs, and meat.  Not comfort foods and mostly things harsh on

one's symptoms.  I know that I can go back to chicken, chicken soup, and cooked

carrots.  But rice seems like it would be light on my system.

> >

> >

> >

> > I value this listserv group and value your thoughts.  I'm not going off the

diet yet, but thinking about it.  I have lost about 15 pounds on this diet,

which I'm very happy about.  I've finally gone from chunky to slendor and don't

want to go back to chunky.  I just appreciate your thoughts right now.

> >

> >

> >

> > UC 11 years, dx for 6

> >

> > On Colazol 3 750mg capsules 3Xdaily and nightly rowasa enemas

> >

>

[Guest guest]

,

I, also, would like to encourage you to give the diet a chance. I

know in these days of " take this antibiotic for five days and you'll

feel better " , it's easy to think a short time on any med or program

should cure you. But this is a long term process. I suspect the bad

gut bacteria are probably the most hidden foes our bodies have to

deal with, and they are stubborn. The body, given the right diet so

they are no longer fed, will get rid of them over time, and I think

of it as in waves, the easier stuff first, the more stubborn bacteria

as we go along. I come to SCD from IBS, and although I started

feeling some better fairly soon, I still have a long ways to go as I

approach 8 months. It wasn't until six months that I could start

adding more veggies into my diet. It was OK waiting for this,

because I say, I was feeling somewhat better, but of course it has

been very nice to have a few more foods lately. There are still

things most people can havea on Intro that I can't, but I wouldn't

give up the diet for anything. It will come.

So, do give it more of a trial. I suspect the good effects will keep

coming to you asthey do to just about everyone who really follows the diet.

Hang in there,

[Guest guest]

,

I, also, would like to encourage you to give the diet a chance. I

know in these days of " take this antibiotic for five days and you'll

feel better " , it's easy to think a short time on any med or program

should cure you. But this is a long term process. I suspect the bad

gut bacteria are probably the most hidden foes our bodies have to

deal with, and they are stubborn. The body, given the right diet so

they are no longer fed, will get rid of them over time, and I think

of it as in waves, the easier stuff first, the more stubborn bacteria

as we go along. I come to SCD from IBS, and although I started

feeling some better fairly soon, I still have a long ways to go as I

approach 8 months. It wasn't until six months that I could start

adding more veggies into my diet. It was OK waiting for this,

because I say, I was feeling somewhat better, but of course it has

been very nice to have a few more foods lately. There are still

things most people can havea on Intro that I can't, but I wouldn't

give up the diet for anything. It will come.

So, do give it more of a trial. I suspect the good effects will keep

coming to you asthey do to just about everyone who really follows the diet.

Hang in there,

[Guest guest]

Just thought I'd mention that the original post is from March 2009. I think

probably made up her mind a long time ago ;-)

Holly

Crohn's

SCD 12/01/08

[Guest guest]

Just thought I'd mention that the original post is from March 2009. I think

probably made up her mind a long time ago ;-)

Holly

Crohn's

SCD 12/01/08

[Guest guest]

PJ,

Any chance you are from Bidgeport, California?

Ellen

>

> - I would like to add to these great responses, that 4 1/2 months can

not undo 11 years of illness. I believe the benefits from SCD are in the long

run. Yes, people feel better after 4 1/2 months, but the first year, I've heard,

has it's ups and downs. I've been on SCD 11 months, and am feeling much better

than I did at 4 1/2 months. I believe it is a slow process, but well worth the

effort.

>

> PJ

>

[Guest guest]

PJ,

Any chance you are from Bidgeport, California?

Ellen

>

> - I would like to add to these great responses, that 4 1/2 months can

not undo 11 years of illness. I believe the benefits from SCD are in the long

run. Yes, people feel better after 4 1/2 months, but the first year, I've heard,

has it's ups and downs. I've been on SCD 11 months, and am feeling much better

than I did at 4 1/2 months. I believe it is a slow process, but well worth the

effort.

>

> PJ

>

[Guest guest]

Just thought I'd mention that the original post is from March 2009. I think probably made up her mind a long time ago ;-)? Then why did somebody reply to it just now? That makes more sense though, because I saw the "Re: Thinking of terminating the diet" subject line and was confused because I never got the original post. Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 50 mg 1x per dayPrednisone 40 mg 1x per day

[Guest guest]

Just thought I'd mention that the original post is from March 2009. I think probably made up her mind a long time ago ;-)? Then why did somebody reply to it just now? That makes more sense though, because I saw the "Re: Thinking of terminating the diet" subject line and was confused because I never got the original post. Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 50 mg 1x per dayPrednisone 40 mg 1x per day

[Guest guest]

Nope... North Carolina

PJ

> >

> > - I would like to add to these great responses, that 4 1/2 months can

not undo 11 years of illness. I believe the benefits from SCD are in the long

run. Yes, people feel better after 4 1/2 months, but the first year, I've heard,

has it's ups and downs. I've been on SCD 11 months, and am feeling much better

than I did at 4 1/2 months. I believe it is a slow process, but well worth the

effort.

> >

> > PJ

> >

>

[Guest guest]

Nope... North Carolina

PJ

> >

> > - I would like to add to these great responses, that 4 1/2 months can

not undo 11 years of illness. I believe the benefits from SCD are in the long

run. Yes, people feel better after 4 1/2 months, but the first year, I've heard,

has it's ups and downs. I've been on SCD 11 months, and am feeling much better

than I did at 4 1/2 months. I believe it is a slow process, but well worth the

effort.

> >

> > PJ

> >

>

[Guest guest]

> You had a transfusion and they only gave you 40 mgs of pred? That seems > like a really small amount. I mean every time I was hospitalized I was > on higher than 60 mgs (IV). That's terrible but also odd about the > allergy though especially because prednisone blocks allergy symptoms > (one reason I had to wait to get off it before doing a patch test). I > imagine that means your allergy is extremely bad if it's still happening > even while on the pred?> StaceySmall amount? Are you kidding?  Forty mg. of prednisone would nearly kill me (never mind 60), and almost did when my doctor first tried it with me -- until it was figured out that I can tolerate only a much lower dose: 20, absolute max for me, but 5-7 became my normal, primary effective dose.  Prednisone doesn't have anything to do with blood transfusions. I'm not sure why the connection -- unless Kat's doctor figured the pred. would stop the bleeding from one end while they were pouring blood into the body intravenously. I had blood transfusions when my Crohn's was at its worst -- for extreme anemia -- but no concurrent prednisone. Re: allergies. Kat, I would recommend trying nettle; it's an herb that's an effective antihistamine without side-effects. It may take several weeks to really get into your system for that you feel effects, but it does work for most people. I find it extremely effective. And once you've taken it for a while, when you need it again, your body will already be sort of "primed" to it, so it then works very quickly.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]

> You had a transfusion and they only gave you 40 mgs of pred? That seems > like a really small amount. I mean every time I was hospitalized I was > on higher than 60 mgs (IV). That's terrible but also odd about the > allergy though especially because prednisone blocks allergy symptoms > (one reason I had to wait to get off it before doing a patch test). I > imagine that means your allergy is extremely bad if it's still happening > even while on the pred?> StaceySmall amount? Are you kidding?  Forty mg. of prednisone would nearly kill me (never mind 60), and almost did when my doctor first tried it with me -- until it was figured out that I can tolerate only a much lower dose: 20, absolute max for me, but 5-7 became my normal, primary effective dose.  Prednisone doesn't have anything to do with blood transfusions. I'm not sure why the connection -- unless Kat's doctor figured the pred. would stop the bleeding from one end while they were pouring blood into the body intravenously. I had blood transfusions when my Crohn's was at its worst -- for extreme anemia -- but no concurrent prednisone. Re: allergies. Kat, I would recommend trying nettle; it's an herb that's an effective antihistamine without side-effects. It may take several weeks to really get into your system for that you feel effects, but it does work for most people. I find it extremely effective. And once you've taken it for a while, when you need it again, your body will already be sort of "primed" to it, so it then works very quickly.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]

Well I guess everyone is different! I am just like Stacey- I get AT LEAST

40-60mg when I am flaring- usually IV. 20mg is my " effective " dose. n- you

are lucky that 5mg can have an effect on you.

-Joanna

SCD 9/2009, Crohn's 1992, 30 mg prednisone

> > You had a transfusion and they only gave you 40 mgs of pred? That seems like

a really small amount. I mean every time I was hospitalized I was on higher than

60 mgs (IV).

Small amount? Are you kidding? Forty mg. of prednisone would nearly kill me

(never mind 60), and almost did when my doctor first tried it with me -- until

it was figured out that I can tolerate only a much lower dose: 20, absolute max

for me, but 5-7 became my normal, primary effective dose.

[Guest guest]

Well I guess everyone is different! I am just like Stacey- I get AT LEAST

40-60mg when I am flaring- usually IV. 20mg is my " effective " dose. n- you

are lucky that 5mg can have an effect on you.

-Joanna

SCD 9/2009, Crohn's 1992, 30 mg prednisone

> > You had a transfusion and they only gave you 40 mgs of pred? That seems like

a really small amount. I mean every time I was hospitalized I was on higher than

60 mgs (IV).

Small amount? Are you kidding? Forty mg. of prednisone would nearly kill me

(never mind 60), and almost did when my doctor first tried it with me -- until

it was figured out that I can tolerate only a much lower dose: 20, absolute max

for me, but 5-7 became my normal, primary effective dose.

[Guest guest]

I was on 70 tapering down when I first got ill.  Later on in the hospital, they gave it to me via IV and I bloated so much, they had to taper me fast.  I would topple over if I tried to bend down, I was so bloated.  Besides it was dangerous.  This was after a few years of going on pred, tapering, flaring, repeat.  I was kept on 30mg for an extended period when it was 'acute' in my stomach.  After that I could barely tolerate any without a lot of side effects (hair loss, bloating, anemia).  20mg bothered me last time I had to take it--was very nervous. 

 

I wonder if the more you take pred, the worse the effects are--even if it stops a flare in 24 hours.

 

Thanks for the nettle tip (I read the post to Kat) because I have cat and dust allergies. 

 

Debbie 40 cd

[Guest guest]

I was on 70 tapering down when I first got ill.  Later on in the hospital, they gave it to me via IV and I bloated so much, they had to taper me fast.  I would topple over if I tried to bend down, I was so bloated.  Besides it was dangerous.  This was after a few years of going on pred, tapering, flaring, repeat.  I was kept on 30mg for an extended period when it was 'acute' in my stomach.  After that I could barely tolerate any without a lot of side effects (hair loss, bloating, anemia).  20mg bothered me last time I had to take it--was very nervous. 

 

I wonder if the more you take pred, the worse the effects are--even if it stops a flare in 24 hours.

 

Thanks for the nettle tip (I read the post to Kat) because I have cat and dust allergies. 

 

Debbie 40 cd

[Guest guest]

The transfusion/pred connection was simply illustrating that I was so ill and my

UC was so bad and I was losing so much blood that I needed a transfusion and to

help get my symptoms under control (so the bleeding could stop) I needed a high

dose of prednisone. If they'd put me at 40 mgs I wouldn't have had any effect

at all. I wish I could say that 20 mgs was the max I could tolerate! It would

really be nice not to have to deal with the extreme side effects when I flare

bad enough to warrant going back on the steriod So yes, " small amount " is

exactly what I meant.

Stacey

>

>

> ______________________________

>

> 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

>