Re: UC and SCD

[Guest guest]

Hi Teri,

I have not been on UC for long...only 4 months...and I

can't address your question about remicade, but I

would like you to know that I have had UC for 28 years

and am doing well on SCD. I am also on Colazal. I

experienced results with SCD after about 2 weeks on

chicken soup, grape juice gelatin and eggs. I added

foods from the stages list on pecanbread.com about

every 3 days keeping a strict journal of everything I

ate and bowel functions with time of day also. If I

had no reaction, I added that new food to my diet. I

was able to tolerate split peas and beans after 3

months and now am able to eat raw fruit (no peelings),

nut flour, dates and raisins. I feel great and have no

symptoms of UC at this time!

I did have setbacks in the beginning and felt like

giving up on the diet. One thing I did wrong was

introduce some new foods into my diet too soon, like

bananas. Also the bananas at first were not ripe

enough. Another thing that caused a setback was

stopping my meds. I felt so good that I just stopped

the Colazal suddenly and had a relapse with a severe

eye inflammation related to UC. I hope to be off meds

in time, but will probably wait until after I have

been on SCD for 6 months and reduce them gradually. I

see a Naturopathic doctor and will get his advice.

I hope your daughter responds well to SCD and can be

healed. It is a plus that you found the diet so soon.

It is important for you to keep in mind that the

disease can become worse over time like mine and it

can move to include more of the colon. I started

with a diagnosis of proctitis and my last colonoscopy

showed that 3/4 of my colon was diseased!

I have read that many people experience a 3 month

relapse after being on SCD, but that didn't happen to

me.

I wish you and your daughter the best! I hope this was

of some help to you both.

Janet

UC 28 years

SCD 4 months

P.S. I was able to tolerate the peanut butter brownies

made with smooth peanut butter after about 2 months.

The recipe is in BTVC...only peanut butter, eggs,

honey, and baking soda. They are delicious and taste

like they are made with flour.

--- clubsaj wrote:

> Hi,

>

> My daughter, 17, was diagnosed with UC within the

> last year. She found

> no relief on anything but prednizone and finally

> remicade. I'd like to

> think she could someday be free of meds especially

> since she still has

> some problems on the remicade (but is infinately

> better than before).

> I'd like to hear from some of you who had UC (not

> Chron's as it seems

> the latter responds much quicker) .. how long did it

> take for SCD to

> seem to be working? How slow did you build up to

> new foods? How

> frequently did you have setbacks? Could remicade

> reactions be slowing

> her response to the diet?

>

> Thanks for any info.

>

> Teri

> daughter with UC

> SCD 2 months

>

>

________________________________________________________________________________\

____

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[Guest guest]

Hi Teri. I have UC, and had been in a year long flare that nothing would touch.

We tried everything but steroids (steroids seriously screwed me up last time I

was on them, so doc & I refuse to use it.)

> how long did it take for SCD to seem to be working?

5 days. I did the intro diet for 5 days and on the morning of the 5th day I

had trophies.

> How slow did you build up to new foods?

I added 1 new food every other day or so, as long as I didn't react badly to

the previous one.

> How frequently did you have setbacks?

I had a 3 month flare, but not nearly as bad or as long as previously

experienced. Mostly setbacks depended on what I ate. As long as I didn't eat

anything illegal I was ok. The longer I'm on the diet any flares are fewer,

farther between and much much much less severe.

>Could remicade reactions be slowing her response to the diet?

No idea on this one, as I've never been on remicade.

Kathleen

uc - 4/98

scd - 8/03

_________________________________________________________________

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[Guest guest]

Hi Teri,

My 13 yo son was diagnosed with UC in 2005. We've been on SCD for a

year. It has made a huge difference for him.

In 2006 he spent a month in the hospital over 4 visits, and missed many

other days of school when he just couldn't get out of bed. He was all

puffed up from steroids, and not really getting better. We'd tried

every alternative/natural treatment we could find. They started him on

remicade, which probably helped a little, but I didn't notice a huge

difference.

We started SCD in January 2007. He agreed to give it a month and see

how he did. I can't remember when exactly he started to feel better,

but by the end of the month he was definitely responding to the diet

and had more energy. We made a lot of mistakes over the first year on

SCD. A major one was a whole bag of dried pineapple chunks with added

" juice concentrate " that caused a flare-up that landed him back in the

hospital for a few days in May. We weren't prepared to keep on the

diet in the hospital, so he went back to hospital food for a few days.

He had another colonoscopy while there and his GI was quite pleased

with the healing that had taken place. He had been on remicade for

awhile at that time, and was switching to colazal, but I'm certain that

most of the healing was due to the 5 months he'd been on SCD. Nothing

else had made such an obvious improvement as when he went on the diet.

We still worry every time he gets a virus, or is under a lot of stress

at school that his UC will flare up again, and every time we have been

amazed when he pulls through just like a normal, healthy kid. And he

looks healthy, and has been growing like crazy this year! He does

still have some blood occasionally -- usually triggered by a virus, or

when I accidentally fed him a " honey blend " with corn syrup for a few

days -- but he's been able to pull out of it with just a nightly rowasa

enema for a few weeks and been fine. The only time he's had UC pain

since last May was from the honey blend-laced SCD brownies -- so that

is more confirmation that the diet is working.

I did a lot more cooking early in the diet -- trying to help him

transition from what he was used to -- lots of SCD muffins & desserts.

I guess he needed that transition time. Now we concentrate more on

meats & cooked vegetables/fruit & yogurt as much as possible. But

he's used to the diet now, so he's OK without all the extras all of the

time. Oh, and we've started making a lot more broths for him to sip on

or eat as a soup -- that seems to be really good for him. I think we

went to raw foods too soon, so we've scaled back on that for awhile.

Early in the diet, I had not read about the diet stages on

pecanbread.com, so now I imagine we did a lot of things too soon, but

even with all of it, he's made slow, sure progress.

It helps in all of this that my son can see a light at the end of the

tunnel. He knows that when he's been symptom-free for a year, he can

start experimenting with reintroducing other foods. He is determined to

put this thing into remission. I'm so thankful that a friend told us

about this diet, and that there are so many helpful people on this

e-mail list to answer all my newbie questions. I can't imagine where

we'd be now without it. Sorry this note is so long! I hope it is

helpful to you.

13 yo son w. UC diagnosed 2005

SCD 1 year

>

> I'd like to hear from some of you who had UC (not Chron's as it seems

> the latter responds much quicker) .. how long did it take for SCD to

> seem to be working? How slow did you build up to new foods? How

> frequently did you have setbacks?

[Guest guest]

Teri,

If I hadn't been tired and distracted when I was buying the " honey

blend " I would have read right there on the ingredients list that they

had added corn syrup. I still can't believe that got by me. I

remember having some vague notion in my stupor that day that it must be

a blend of different types of honey, and that for the sale price, it

was worth a try. Boy, you can never let your guard down! I do look

now to make sure it says somewhere that it is " pure honey. " Sometimes

I find this on the front of the package, while the ingredients list

just says honey.

13 yo son w. UC diagnosed 2005

SCD 1 year

On Wednesday, February 6, 2008, at 02:44 PM, Terissa Sajevic wrote:

>

> How on earth do you tell if you are buying pure honey?  It seems to me

> they all only list honey as an ingredient.

[Guest guest]

Thanks again for responding .. I'm sure we've added foods too quickly, but she has really needed the variety to be able to stick to the diet and I figure it has to be better than not on the diet at all. Since you said you probably added foods too quickly, I'll ask you .. did you at some point go back to the beginning and add everything slowly, or did you just kind of continue from where you were. Its encouraging to hear you made progress even while adding things too quickly. We are avoiding raw fruits and veggies. Also, was he having a bad response to the remicade or did you switch off for another reason. We are also considering switching to colozal although we're terrified because even though she has some bad reactions the first couple of weeks after remicade she is overall doing fairly well and we hate to leave remicade if that's what's actually helping her.

Thanks for your answers!

Teri

mother of L

UC 1 yr

SCD 2 mths

[Guest guest]

Thanks for letting me know about your experience .. it really helps.

Teri

--- clubsaj wrote:> Hi,> > My daughter, 17, was diagnosed with UC within the

> last year. She found > no relief on anything but prednizone and finally> remicade. I'd like to > think she could someday be free of meds especially> since she still has > some problems on the remicade (but is infinately

> better than before). > I'd like to hear from some of you who had UC (not> Chron's as it seems > the latter responds much quicker) .. how long did it> take for SCD to > seem to be working? How slow did you build up to

> new foods? How > frequently did you have setbacks? Could remicade> reactions be slowing > her response to the diet?> > Thanks for any info.> > Teri> daughter with UC

> SCD 2 months> > __________________________________________________________Looking for last minute shopping deals? Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping

[Guest guest]

Hi Teri,

Well, looking back over my notes from a year ago January, when we began

the diet, it's amazing he made any progress at all! I didn't know

about these e-mail lists, so just dove in based on the book. My son

did the intro diet for 2 days, and then I started adding in foods from

the cookbooks at a pretty fast pace. He was still on steroids at the

time, so maybe that's why he was able to tolerate foods that were

introduced more quickly than they should have been. But from my notes,

I see that I was cooking like crazy, the blood cleared up after a few

weeks, his gas level diminished, and his energy level picked up -- so

even though I didn't know about the pecanbread food stages, I guess

things were working.

I see from my notes that about a month & a half in -- mid February --

we were feeling so optimistic about his health that my son & husband

went on a boy scout skiing trip to Colorado. My son didn't hydrate

well enough for the altitude, and all the noise & chaos was too much

for him. My husband called thinking that they might have to go to an

emergency room, but decided to wait for the night. A few months before

this, that's definitely what would have happened, followed by a week in

the hospital for recovery. Amazingly, he felt a little better the next

morning. We could hardly believe it. Before, once the downward spiral

hit, there seemed nothing we could do to avoid the hospital. That

morning in Colorado, they decided to get down to a lower altitude and

see what happened. As soon as they got down from the mountains, he

felt better, and recovered quite a bit on the long car trip home.

> Since you said you probably added foods too quickly, I'll ask you ..

> did you at some point go back to the beginning and add everything

> slowly, or did you just kind of continue from where you were. 

From my notes again -- we continued trudging blindly forward with me

planning, shopping & cooking 40 hours a week. How did I ever do that?!

I guess adrenaline! Then in April I bought the dried pineapple chunks

with added " fruit juice concentrate. " I thought we'd sprinkle them on

our raw salads, but my son was eating them from the pantry by the

handful. It looks like he was eating a lot of raw fruits & veggies at

this point too -- so much easier to pack lunches that way. He started

a downward spiral -- loose stool, blood -- it took me a couple weeks to

figure out what was happening. We did the beginner diet for a couple

days, then I started adding cooked fruits & veggies back in. Again, I

see that we went too fast with things, adding raw foods to quickly, we

really didn't give him time to recover fully. Lots of stress at

school. Then he ended up in the hospital right after school let out in

May. That's when they did another colonoscopy and saw the significant

healing that had taken place despite all the mistakes we were making!

At the hospital they switched him from sulfasalazine to colazal. Still

doing remicade. I was beginning to wonder if the remicade was doing

any good at all, but the doctor was (and is) afraid to stop it since

you can't start it again if you stop, so continued on with that. Got

home after a much shorter hospital stay and went back on the beginner

diet. Again I see we introduced raw foods too quickly. But they had

upped the steroids again, so I guess that's why the blood went away at

that point. We continued on like this with ups & downs, but still

improving until I found this e-mail list this fall and realized how

many things I was doing wrong.

His healing would probably be a lot further along if I knew then what I

know now, but he has pulled through several viruses with just slight

flare-ups of his colitis, and has not had to go back to the hospital

since May, so it is definite improvement. It's hard to keep a teenager

from making mistakes. He tries, but he gets confused sometimes.

Yesterday he had a fruit & ice at a coffeehouse, made with frozen

bananas & raw berries. (I wasn't there at the time, he'd gone to meet

friends.) But he seems OK, though I'm certain the bananas would not

have been ripe enough. He's been completely off the steroids since the

summer, so I know the steroids are not masking the effects now. Like I

mentioned before, the only thing that has really sent him over the edge

since May was my lapse in attention about the cheap " honey blend " I put

in his brownies a few months ago. Again though, I threw away the

brownies and he rebounded.

Right now he's having a slight flare brought on by a 24 hour virus he

had a couple weeks ago. I didn't go back to the intro diet this time,

but am trying to keep to stage 3 foods and under. (Well, if I can keep

him away from those fruit & ices at the coffeeshop!) He seems to be

improving. I try not to over-react to the mistakes he makes -- he is a

teenager after all, so I have to let him have some freedom. I can't be

with him all the time to help him make choices. So, I'm thinking our

original goal of 2 years to the time when we could start trying to

reintroduce some regular (SAD) foods is probably overly optimistic. I

don't want him to get so caught up worrying about mistakes that he

begins to hate the diet. I guess the next thing I should concentrate

on is finding the right enzymes so that these mistakes take less of a

toll.

> Also, was he having a bad response to the remicade or did you switch

> off for another reason.  We are also considering switching to colozal

> although we're terrified because even though she has some bad

> reactions the first couple of weeks after remicade she is overall

> doing fairly well and we hate to leave remicade if that's what's

> actually helping her.

We're still doing remicade. I'm hoping to wean him off of it, but

since he's still having these mini-flares, the doctor doesn't want to

do that yet. Each time we see the doctor, I ask what medication we

might be able to get rid of. I think the main thing that's helping him

is probably the colazal -- the sulfasalazine didn't do a thing for him.

I just have to be patient, and give him time to heal before making any

drastic changes like cutting out the remicade -- though like I said,

I'm not sure whether it's doing any good or not. I just haven't seen

any significant changes -- good or bad -- after he has a remicade

treatment. At least we're off the steroids. He'd also off the flagyl

he'd been on last year.

Sorry this is such a long e-mail! I hope this answers your questions.

13 yo son w. UC diagnosed 2005

SCD (with lots of mistakes) 1 year