Re: Thinking of terminating the diet

[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]

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]

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]

n, thanks for the info about nettles - unfortunately I tried them this last

summer and broke out in hives. My skin was peeling off for weeks!

The transfusion was because I had lost half the blood that was normal, and I was

severaly dehydrated since it hurt to drink water, so I was probably at a lower

blood count than half really. My doctors didnt' want me to go home from the

hospital because I'd had fainting/twitching spells for months and they were

afraid I would fall and get brain damage, so I had to get more blood right then.

The prednisone was to get the flair under control so I would stop bleeding 10

times/day. So, they were not related, just two very extreme cases. 40mg/day of

prednisone was aweful, but according to the doctors I " tolerate it well. " I

suppose it is better than a lot of the other drugs out there.

I already had to give up employment, since I was too weak to do anything since

July, and could no longer concentrate. But honestly, 40mg prednisone plus the

anemia and pain finally made me get incompletes in school. This quarter has been

touch and go with just 2 classes. I don't know how you guys have done it. I had

to stop work this whole year almost and nearly quit school. Now with cooking all

my food and being so fatigued all the time during this long, (long!) recovery

time, all my good, non-fatigued hours are spent in the kitchen. Has anyone else

had to quit their life in order to get through this? I know we are all

different, and I have been sick for many years, so it is understandable to be

lacking so much energy and just have to stop, but I wonder at the idea of going

to a 9-5 job during this time. I'm more curious than anything what this has been

like for people.

Kat

27

dx UC June 2009

SCD Feb 2010

prednisone, iron, rhodiola rosea, other supplements

> > 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

> >

[Guest guest]

Another thing regarding nettles if you chose to try it: they are in the same

family that aspirin is made from, or so my naturopath told me, so if you are

allergic to aspirin, you probably want to avoid nettles.

Kat

>

> 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]

hey Kat-

i'm so sorry to hear about the delay in school.

i'm 25 and can relate in a way to the whole " life stopping for a while " thing.

my profession is songwriting so i made a living from touring and recording.

before a big asia tour i was supposed to go on, my stomach/GI got so bad i

couldn't function. not to mention my voice went away from all the reflux

anyway i'm really stubborn and didn't understand how bad off my body was, so

right after my diagnosis (celiac, hiatal hernia, gastritis, duodenal ulcers,

etc) i went to vietnam thinking oh i'll just tell the hotel chefs to cook gluten

free. well turns out i became intolerant to every grain, spice, dairy product,

legume, nut, etc and was starting to starve from all those reactions and not

being able to find safe food, so i canceled my tour, moved in with my parents,

and now conserve my energy for cooking like you do. but i believe, as it sounds

like you do, the body can heal from a whole whole lot if given the right

guidance and enough time. so don't give up!! we'll get our life back, and this

time we'll be better people to live it

-andrea

SCD 2 months

[Guest guest]

Thanks . I'm sorry to hear your story too - that sounds really scary to

be in a foreign country and realize things might be more serious than you

thought. I did the same thing at first and wouldn't go back to the doctor

because I " didn't have time " and kept going to school even when I was literally

green looking and could barely walk up the stairs. I had so much faith that I

could just heal by myself that when nothing worked and I needed medicine I sort

of gave up, I just keep trying but get really sad...it gives me hope again with

every little improvement, with or without meds, and hearing that others have

been through not just the physical stuff but the emotional stuff too and gotten

through it. I keep telling myself, I am healing, but this medicine is preventing

things from getting worse while my body fights the good fight and heals me...it

will take time.

Thanks for the encouragement!

Kat

>

> hey Kat-

> i'm so sorry to hear about the delay in school.

> i'm 25 and can relate in a way to the whole " life stopping for a while " thing.

> my profession is songwriting so i made a living from touring and recording.

before a big asia tour i was supposed to go on, my stomach/GI got so bad i

couldn't function. not to mention my voice went away from all the reflux

> anyway i'm really stubborn and didn't understand how bad off my body was, so

right after my diagnosis (celiac, hiatal hernia, gastritis, duodenal ulcers,

etc) i went to vietnam thinking oh i'll just tell the hotel chefs to cook gluten

free. well turns out i became intolerant to every grain, spice, dairy product,

legume, nut, etc and was starting to starve from all those reactions and not

being able to find safe food, so i canceled my tour, moved in with my parents,

and now conserve my energy for cooking like you do. but i believe, as it sounds

like you do, the body can heal from a whole whole lot if given the right

guidance and enough time. so don't give up!! we'll get our life back, and this

time we'll be better people to live it

> -andrea

> SCD 2 months

>