RE: rough start for first two weeks on scd, should I try adding meds to stablize?

[Guest guest]

,

Your situation has a few parallels with mine (IBD/UC), though I've

only been on Asacol and Prednisone to treat this. I too have had the

bloating and associated discomfort when first starting the SCD, and it

does come and go, but seems to lessen day by day. I jumped straight

into it without following the starter diet, and I'm not suggesting

that anyone should do it this way, just that I did--if I run into

problems I might have to go on the starter diet.

Over the last 3 or 4 months I had been very slowly tapering off of

Prednisone, and came to the point where I was down to 2.5 mg of

Prednisone and then stopped taking it. The tapering was so slow that

I was certain that I was done with my flare-up, at least for a while.

Within a few weeks I started again seeing blood and having my various

IBD/UC flare-up symptoms, and then slowly (over days/weeks) more and

more distinctively red watery blood. I advised my gastroenterologist

and he advised that I start taking Prednisone again at 20 mg. Within

a few more weeks I visited with him, noting that I had an increase in

my side and pains, and sometimes more sharp than usual, along with

still seeing blood, at which point he bumped me up to 40 mg. It was

at this point that I was in the middle of reading more about the SCD

and concluded that I'd better do something different. (If it makes it

through, I've attached a recent message I had sent to another

distribution list about this.)

We all know how horrible Prednisone is for you, and I'm certainly

eager to get off of it, though I realize it will be a slow

tapering-off process again over many months. Over the last week or so

I have stopped seeing blood, which is coinciding with after I

increased my intake to 40 mg of Prednisone but also simultaneous to

starting the SCD. My bowel movements are now actually rare and does

not involve blood... if anything I suspect that some my bloating and

discomfort may be in relation to constipation, though I have had " some

strainge movements, " maybe every 36 to 48 hours.

I don't know if going straight into the SCD (bypassing the starter

diet) is a good idea, but I'm doing it for now anyway, and so far I am

feeling a lot better than ever before over the almost past 4 years.

Yes, I am feeling somewhat bloated and uncomfortable, have had a few

out of the ordinary headaches and slight nasal drainage (possibly

die-off symptoms), but I'm taking far less Darvocet to deal with my

pain than ever before. Overall things are very positive, particularly

with experiencing increased mental clarity and energy levels.

I have not tried some of these other specialized

immuno-suppression/modifier medicines, so maybe that will help you,

but then again maybe (depending your doctor's advice of course) you

might benefit by increasing your Prednisone intake. This is a

horrible idea, of course, but just maybe I am having success with

starting the SCD because I increased from 20 mg to 40 mg of

Prednisone.

Here's wishing you increased health and success with your approaches.

cmd@...

First impressions of the Specific Carbohydrate Diet (SCD)

The following is a recent letter that I sent to " Crohn's Boy " (Jay)

which I felt that I should share with this distribution list in the

event that it might be of some value to other subscribers:

Thanks for the letter... this IBD stuff is great fun, eh? Having

been with it for almost 4 years now I'm anxious to get off of the

Asacol (9 a day), Prednisone (currently 40 mg a day) and Darvocet for

pain. It's very encouraging to hear what you've done with your

Crohn's condition, and equally encouraging is the miles and miles of

positive testimony I've read about the Specific Carbohydrate Diet

(SCD). As a 35-year-old guy with a wife and two kids, the last thing

that we need more of is having me dragging us down due to exhaustion,

ongoing discomfort, repeated hospitalizations and loads of medical

bills.

Just in the last several days we have given away all of our grocery

items that are non-SCD compliant and have only been purchasing and

eating 100% SCD compliant products. I don't know for certain what the

cause is but I can tell you that in the last several days I have much

much much (as in, a lot) more mental focus and energy levels than I

have in just about as long as I can remember in the last several

years. It is possible that this is in relation to the steroids, which

have been recently increased from 20 mg to 40 mg a day, but I am

hopeful that when I begin tapering off of Prednisone and continue to

stick with the SCD that I will continue to see similar positive

effects. I'm inclined to suspect that the source of my new found

focus and energies might be from both (steroids and SCD), because

previously when I jumped on Prednisone I did experience some of these

effects, but this time I'm seeing some strange new things, such as:

- significantly increased mental acuity and physical energy levels

- ability to sleep longer than 4 or 5 hours a night

- chronic dry skin on my face disappearing, and my face now having a

good oil content and tightness; I do not recall this happening

previously when starting steroids

- a better balance between my hunger levels and desire for food

intake, to include light snacking a couple of times a day (e.g.,

apples, cheese)

- possible die-off symptoms, including occasional headaches, excessive

fullness and bloating, and unusual bowel movements

As an amateur scientist I'm refraining from concluding that the SCD is

the solution, though after I have been on it from between several

months to a year or two, and have gotten off of my medications, then

there will come a point in time when I will likely feel confident in

promoting SCD 100%. I've gotta say though, it's looking like a

miracle cure so far.

Although I do have a copy of Breaking the Vicious Cycle, I'm still

needing to read through it completely. I understand that it's

recommended to begin a special starter diet for the first couple of

weeks, which I have not done and might need to if I have problems. At

this point we just jumped straight into the SCD lifestyle and so far

the results have been positive, save for some of the bloating and

associated discomforts.

We're eager to figure out the SCD yogurt and start using it as a

common milk/cream type of a resource, as well as for bacterial flora

digestive maintenance, along with flour substitutes like almond flour.

We also look forward to having more smoothies and putting our juicer

back to work. The recipes we've come across are impressive and very

enticing to us.

I am exceptionally grateful for you, Kay-lynn, Gay, the SCD community

in general, and most of all my wife and family for being so

supportive: and to think that this is all in just the course of maybe

a week at the most. These recent practices have really refocused my

entire family in terms of how we live and enjoy our time

together--almost a rebirth of sorts.

Thank you again, and I look forward to someday reaching a point of

assurance with the SCD solution where I will go so far as to

significantly put my skills to use to broadly and loudly advertise the

wonders of the SCD. Your volunteer efforts (and others' efforts) are

impressive and are not by any means going unnoticed.

Kindest regards and best wishes,

cmd@...

[Guest guest]

Hi . I take Humira. I was doing so well on Azathioprine, Humira and prednisone, I was slowly tapered off everything but Humira. Within 2 weeks, blood started appearing. That was August. I am now very sick. Too much credit was given to the Humira. It costs about $50,000/yr. I qualified for Patient Assistance as a rich poor person so it was free. I think the price I paid though is currently being sick. Humira causes migraine type of headaches too of which I get at least 2 a month. Everyone has such hope for Humira as a wonder drug. I think the doctor was blinded during my decline. I personally think Humira was a non-issue to healing in any way shape or form. I start Remicade this week. Anyone want to share drug experience about Remicade?

Terri

8 weeks SCD

2 years UC

rough start for first two weeks on scd, should I try adding meds to stablize?

I've been on the SCD for two weeks now. Feeling really lethargic,struggling with energy, still having blood in stool. Havingdifficulty functioning at work. I've been on prednisone 4/5 out of 5years and desperately trying to get off. I was hoping SCD would helpstablize things so I could avoid more meds. I can either double myprednisone from 20 to 40mg, or my doctor suggested staying on 20mg andstarting humira.Since starting the diet, my pattern of waking up during the nightthrough the early morning to have bowel movements remains. Averaging5-10 times of this, of which the first 3-4 are actual formed bowelmovements, then it's mostly a mix of blood and stool. It is worthnoting I have bowel movements that are mostly soft, not actualdiarreah (meaning liquid, sorry for the graphics, just trying to beclear). This was the case before starting SCD too.I did the starter diet for 2 days. I felt very hungry and after thefirst week, introduced more SCD recipes out of the BTVC book, and feltless hungry. I may have needed more time on the starter diet, but Iwas barely able to function at work while on it.On the bright side, I've had several days where I felt better, moreenergetic, less nautious/blah, about 3 days out of 14. I went to thebathroom 3 times or less during the night/early morning on these days. After the first week on the diet, I noted less bloating and gas. Week2 introduced more foods and had more bloating again. I've read some people need to stablize on meds before the scd canreally work for them. So I would like to ask for any insights you canshare around your experience with this - starting the diet, but notgetting much better, and then stablizing on meds, did it help you reapthe benefits from the diet and eventually taper off meds?appreciate any insights you have on using meds to stabilize IBD so theSCD can be more effective, as well as anything else that comes tomind. thanks! SCD 2 weeksUC 5 years20mg prednisone

[Guest guest]

Hi ,

your case seems a little bit like mine, so I guess we both have to

figure out a few things in order to get better. Here's what's going on

with me.

After a horrible flare-up I started taking Humira. My GI believes that

it actually got me out of the hospital (thanks to it I also got rid of

prednisone and 5 other medicines that I was taking at the same time).

As some other people have said, there are lots of expectations about

this " miracle " drug. However, as someone else also pointed out, the

drugs may come with serious side effects (from rashes to cancer) and

at a very high cost. In any case, I have been taking it since March

and Colazal since 2007. Now I have a mild flare-up (after a 6 month

remission), so it seems that they did not help that much. Steroids

have not helped either in the past (they just sent me to the hospital

two times).

The only thing that I did not do properly was the diet. I started with

it as the same time as Humira and I started to feel WAY much better;

but I do not what caused this (SCD or Humira). Thus, I started having

some illegal foods and at the end I just got sick. Methodologically,

this suggests that I have to give the diet another try (but be very

strict with it)...which is what I have been doing although my symptoms

are still there, but being sort of reduced in intensity.

Starting the diet is not easy and it may take time to get better. I

think it is important to do the intro diet for quite a few days and

then introduce more things. I also get hungry, but then I just have

some filling, yet mild SCD food like bananas or just a bit more

yogurt. I also tend to make lots of muffins (last time I made 24 just

for myself). That should help.

Exercise is also important and I highly recommend that.

A graphic question: do you know where your blood is coming from? The

color or brightness of it will tell you were it is coming from. Based

on this I believe you can adjust the diet and discuss it with your GI.

Maybe you need antibiotics instead of prednisone or Humira (but who

knows). I am not in favor of medication in any case, but they might

help you.

In short, try the diet, be patient with it (I know it is hard), and

carefully think about medicine. Humira might be prescribed for up to a

year (but it might help you). Nothing else has really helped me, but

then there's the argument that maybe drugs do not improve your

condition but avoid getting it worse.

I hope this helps.

Best,

alex.

>

> I've been on the SCD for two weeks now. Feeling really lethargic,

> struggling with energy, still having blood in stool. Having

> difficulty functioning at work. I've been on prednisone 4/5 out of 5

> years and desperately trying to get off. I was hoping SCD would help

> stablize things so I could avoid more meds. I can either double my

> prednisone from 20 to 40mg, or my doctor suggested staying on 20mg and

> starting humira.

>

> Since starting the diet, my pattern of waking up during the night

> through the early morning to have bowel movements remains. Averaging

> 5-10 times of this, of which the first 3-4 are actual formed bowel

> movements, then it's mostly a mix of blood and stool. It is worth

> noting I have bowel movements that are mostly soft, not actual

> diarreah (meaning liquid, sorry for the graphics, just trying to be

> clear). This was the case before starting SCD too.

>

> I did the starter diet for 2 days. I felt very hungry and after the

> first week, introduced more SCD recipes out of the BTVC book, and felt

> less hungry. I may have needed more time on the starter diet, but I

> was barely able to function at work while on it.

>

> On the bright side, I've had several days where I felt better, more

> energetic, less nautious/blah, about 3 days out of 14. I went to the

> bathroom 3 times or less during the night/early morning on these days.

>

> After the first week on the diet, I noted less bloating and gas. Week

> 2 introduced more foods and had more bloating again.

>

> I've read some people need to stablize on meds before the scd can

> really work for them. So I would like to ask for any insights you can

> share around your experience with this - starting the diet, but not

> getting much better, and then stablizing on meds, did it help you reap

> the benefits from the diet and eventually taper off meds?

>

> appreciate any insights you have on using meds to stabilize IBD so the

> SCD can be more effective, as well as anything else that comes to

> mind. thanks!

>

>

> SCD 2 weeks

> UC 5 years

> 20mg prednisone

>