Re: new medicines

July 14, 2006

Hi Belle,

> My son has crohns has been on SCD since December 2005. He has

been doing well and has been on pentasa, (got off prednisone in

January 2006) since his diagnosis in November 2005. Since the

beginning of June he has had 3 to 4 different flare ups that each

last about a week or a week & a half. I am wondering if it was

nectarines on one flare, and cherries on another. Or chlorine from

going swimming. I just don't know. I am now cooking his fruit though.

What other foods is he eating? Nuts, Vegetables...Are the veggies

peeled?

If he is still flaring you may want to either go back to the intro

for a day or two and gradually readd food until things settle down

or just use some basic foods.

> Yesterday he went to his doctor and he thought that was too many

in such a short amount of time. Plus the areas where the crohns was

found in my son's tummy were tender to the touch.

>

> The doctor has put him on 2 additional meds. Those are Zegerid and

Entocort. The doctor wants to do another scope if he has another

flare up this month. My question is, is anyone familiar with these

meds? If so would you let me know?

The entocort is used to treat the last part of the small intestine

and the beginning of the large intestine. It is a nonsystemic

corticosteroid, which means it works mainly in the one area of the

body and the majority of the med won't go in the bloodstream. This

means that entocort should have less side effects than other

corticosteroids (like prednisone).

I haven't heard of Zegerid before. A google search says that it is

a Protein Pump Inhibitor and used for heartburn and a number of

other illnesses.

http://www.medicinenet.com/omeprazole_suspension-oral/article.htm

" It is used to treat acid-related stomach and throat (esophagus)

problems (e.g., acid reflux or GERD, ulcers, erosive esophagitis, or

Zollinger-Ellison Syndrome). This medication may be used in

combination with antibiotics to treat certain types of ulcers caused

by bacterial infection. "

I am nervous and sad about new medicine and about his flares. Any

information would be great.

Sheila, SCD 2/01, UC 22yrs

mom of and

July 16, 2006

Hi Belle,

> Thank you for responding! I started to email a reply to your

questions yesterday, I had to leave the computer for a minute with

the incomplete email still not sent, my daughter got on it, and when

I got back the message was gone. I don't know what she did and

neither does she. I don't know if you received it or not. So sorry

if you already received an email from me!

No, I didn't receive it, but I certainly understand about kids and

computers - it may be floating somewhere in cyberspace

> Some of the other foods my son is eating are peeled and/or cooked:

zucchini, carrots, butternut squash, spaghetti squash, tomato sauce,

broccoli, green beans, black beans, navy beans,green and red

peppers, califlower, onion, garlic, herbs, and spinach. He eats raw

lettuce, tomatoes, avacado, cilantro, and carrots- but not much

lately due to the flare ups.

There are some foods here that throw up red flags for someone having

multiple flares.

In order of worst likely culprits:

1. black beans (these are for those who are well healed - for your

son I would wait at least a year or more to try these)

2. navy beans (are you soaking overnight and then rinsing, cooking

according to BTVC directions). Even if followed correctly these can

be problematic especially if he is still having lots of symptoms.

3. broccoli and cauliflower. Both are part of the cabbage family.

If he has diarrhea or bad constipation (what are his bowel symtoms

both before or during a flare?) you should probably wait on

introducing the cabage family foods until his bowel has done a bit

more healing.

4. Does he have a stricture/narrowing of the ileum?

If yes, the spaghetti squash and peels or fruits and vegetables may

be trouble.

See

http://www.breakingtheviciouscycle.info/knowledge_base/kb/strictures_

foods_to_avoid.htm

> Since the doctor wants him to gain weight, I use whipping cream

and/or half and half to make him yogurt. Does that still have the

good bacteria in it? He eats it as whipped cream with honey

stuffed in a " crepe " (an omlete) with cooked strawberries & honey.

Sounds very tasty! - I'll be over for some

Yes, it will still have good bacteria in it as long as you add

culture and ferment it for 24 hrs according to the BTVC directions.

It is a good way to put on some weight- especially if he likes it.

> He eat fruits. I've been peeling and cooking since his 2nd to the

last recent flare (except for bananas-not cooked). He eats chicken,

sugar free legal bacon, pork, elk, and beef.

These all sound good.

> In the nut catagory he eats cashews and almond flour. He doesn't

really like any nuts. He doesn't eat much baked goods with almond

flour. Maybe once or twice a week he will have something made with

almond flour.

Cashew are one of the harder to digest nuts. Blanched almonds and

pecans are the easiest to digest nutsand cashews is one of the

hardest to digest. Nut flour is easier to digest than whole nuts.

If he does have a stricture he should avoid whole nuts at least

until symptoms improve greatly.

Sheila, SCD 2/01, UC 22yrs

mom of and

July 18, 2006

Hi Belle,

> Thank you for your email. I did soak the navy beans, soaking (10

hrs- overnight) and cooking according to BTVC. The first ones I

made were still a little hard after cooking. So the next batch I

soaked them longer, the skins started coming off and when I cooked

them, they became mushy - they did not turn out very good. So I

bought Bush's Navy beans in a can. The ingredients are Navy beans,

water, and salt. The same for the black beans. He was eating these

for a few months with no bad affects. Those are the only canned

goods we use.

Sorry to be the bearer of bad news but all canned beans are

illegal. Even if the can says it is only beans , water and salt, 2%

of the the total weight/volume can have undisclosed ingredients.

These undisclosed ingredients can be SCD illegals such as sugar,

flour etc.

Please check out http://pecanbread.com/foodprep.html#homemade

So the trigger for his problem may have been either eating beans

which he wasn't ready for or the illegal beans. Some people slowly

will sink into a flare and not have an immediate reaction. This may

have happened with your son. Did he eat the bean soup a lot during

a week?

>

> I forgot some other foods he eats: peanut butter once in a

great while..Dry curd cottage cheese, cabbage, vinegar (in

recipes), homemade mayonaisse, raw watermelon, raw pineapple,

raisins, dates, dried sour cherries, dried apple slices, honey,

butter, grapes, green peppers, beets, raw cucumbers, a little

cooked and chopped serrano pepper( in guacamole), and eggs.

>

> His bowel symptoms during his flares are bad tummy ache,

vomiting and chronic diarreha. He just feels awful - they really

put him out of commission. Before a flare his bowels movements are

firm with no tummy ache or vomiting.

>

> Thank you for all your information and web link. I did not

realize that about the black beans, broccoli/califlower, spaghetti

squash, and cashews. We will avoid those until more healing takes

place. I thought healing was taking place until this June. How do

you know?

It seems to take a good long while for the body to " recover " after

being on prednisone. From what others have posted on other lists

and personal experience - it can be up to a year after stiopping

prednisone before the body is more stable.

You don't say how old your son is (unless I missed it?) but if young

you can keep a chart to track what foods he is eating and how many

bowel movements and any changes.

If you go back to a basic diet you can do this by getting a baseline

with the intro and then noting reactions to each new food as it is

added. If your son is older he may want to keep track himself (the

embarrassment factor)

>If he is going good for a few months, then has a flare up, what is

taking place? He has been on the diet since Dec. 05, and has done

so good up until June.. When he was diagnosed in Nov. 05, the

doctor said the crohns was in his stomach and illeum, but did not

mention it being narrowed/strictured. His doctor said he wanted to

scope him again if he has another flare that last 3-4 days this

month. He was not feeling good all day yesterday, and his stomach

hurt where his illeum is. He had the diarreha yesterday 1 time. So

I am hoping this is not the start of another flare.

Is he back on the intro now/ It may help clear up the diarrhea. I

would certainly avoid the illegal beans and even SCD legally

prepared beans for a long time until he has had more healing take

place.

If unsure what to add next after the intro, ask away

> Would you suggest avoiding all raw fruits and vegetables? Should

I cook and peel them? How long would you suggest? It is tricky-

after a flare how long should I cook and peel them?

Yes, until the diarrhea clears up I'd avoid the raw fruits and

veggies. Yes to cooking and peeling them. Cook until fork tender.

You should do this until his bowels have started forming and have

been solid for a while. After that slowly add small bits of raw, 1

fruit at a time every couple of days and note any changes in bowels

(solid to loose, increased frequency etc..)

This will help you identify what he is able to tolerate and will

allow his bowel time to heal on the easier to digest foods while

still fueling his body with good food.

>How long before introducing the navy beans?

I would probably wait at least a couple of months. The beans are

much more difficult to digest and with the re-occurence of flares, I

think he needs more time without them to allow his body to heal.

>Do you think the canned ones are still okay to use? If not, do you

have any suggestions on making them turn out?

Absolutely no to the canned ones - sorry.

Down the road, when better able to tolerate legally prepared beans -

what about making them like refried beans or baked beans - where the

mushiness is what it is supposed to be.

Sheila, SCD 2/01, UC 22yrs

mom of and

July 19, 2006

Hi Sheila,

Thanks for your advice. I was thinking about what you said about some people

" sink into a flare and not have an immediate reaction. " It sounds like that is

what he is doing, because it seems as if the flares are happening closer &

closer .If he is doing this, how can I tell what legal foods that I introduce

will cause him a reaction? Since he might not show an immediate reaction. If you

have any tips for this, that would be great.

He has been on Pentasa since his diagnosis; and now with these new flare ups he

is also on Entocort and Zegerid. With all these meds, how can I tell what is

going on, if they help stop the flares?

I am discouraged, but if the beans caused this, and I can do something to help

the situation, then they are outta here! He was eating the beans on mexican

food, like tacos (wrapped in lettuce instead of taco shell), or a side dish. So

maybe every other week for 2 days that week- dinner then lunch the next day. He

was really enjoying them- would not touch them before scd. I can't believe how

much sugar there is in everything that is not homemade..

This may seem like an unusual question but how long before all the bad bacteria

is gone? He has asked me how long he will have to stay on scd. In the book I

understood it to be at least 2 years for crohns? Am I right or did I

misinterperate that? What would you suggest? It is a very healthy diet- I guess

I am just a little discouraged right now, and don't know what to do. It is funny

how food is such a socializing aspect of our society. He has given up alot, but

if it will help it- is so very much worth it. We are very lucky to have found

this diet, but after all the work and sacrifice, it is discouraging to have

these flares and be on more medicine. Is this normal?

I noticed that in your signature that you have UC? Have you had any flare ups

since being on SCD? Do you know people with IBD on SCD do they also have flare

ups?

Thank you so much for all your help! It really means alot. If there is anything

I can do for you, let me know!

Thank you,

Belle

mom to scd 01/06 crohns 11/05

Sheila Trenholm wrote: