Re: New w/ concerns

November 11, 2008

>

> A little background first:

>

> My 9yod was diagnosed with severe Crohn's Colitis in May. We haven't

> done any medication - yet. We started off doing an elemental diet with

>

Kathy,

As a Mom I can appreciate how frightened and helpless you feel.

Melena is defined as black, tarry stools. It doesn't sound like melena.

I have a medical background--I am a dentist and a pharmacist, but I

also embrace alternative methods of healing.....if they work.

I'm curious what you have against medicine to help heal your child--she

sounds very sick.

An untreated anal fistula and using the bathroom 2 to 5 times a day.

You mentioned that you didn't do anything consistently and went from

treatment to treatment and have been doing SCD for only 5 days.

It also sound like you feel like the GI doc is the enemy. I'm just

curious, what do you have against meds for your daughter?

So, you asked for opinions and thoughts--here goes mine. I also think

you are making a big mistake and not doing your child a service. The

one thing right is starting her on SCD--but you need to be committed

and thorough. Follow it to the letter. Make sure the supplements are

SCD compliant or cut them out right now. Find a GI doc ( there are

lists on some of the websites--maybe another member can help you out

with that) who is SCD literate and can help you. Explore the

possibility of medications and treatments that can stabilize your

daughter so that you can continue the SCD and not tear yourself apart

with worry. That anal fistula needs to be treated medically--it will

not go away on it's own.

My own opinion is that a combination of 'Eastern' and 'Western'

medicine/approach is prudent. I have been seeing a chiropracter for

musculo-skeletal problems for thirty-two years and I have great respect

for them and for chiropractic, but I would never want one to solely

coordinate my gastro-intestinal health. They simply don't have the

experience or education. YOU have to become more educated. By that, I

mean research the medicines and care and become an educated consumer

when it comes to discussing your daughter's treatment with the GI and

be open yet discriminating to everything. Knowledge will empower you

and you will make more confident decisions. You and he/she need to

become partners in your daughter's care. Your daughter needs to be made

physically comfortable and you need to be made emotionally comfortable.

You need to find someone you trust. Your chiropracter can also be a

partner in your daughter's care-- the adjustments will keep her central

nervous system working well and her immune system working well.

With severe disease, it may take some time for SCD to heal. There is

also a learning curve where you will make mistakes and there will be

setbacks.

Perhaps if she had mild disease you could fool around with a lot of

ineffective alternative treatments. It doesn't sound like that, though.

It sounds more serious to me. Just my opinion. I wish you only the

best.

Terry

UC less than 6 months

SCD same amount of time

Lialda 2 tabs per day for three months

November 11, 2008

Terry,

Thanks for your advice.

After doing some further research I no longer think it's melena

either. I'm thinking it's because she's been drinking too much grape

juice (which would also account for her having to use the bathroom a

few more times). I was also able to find that this does make ones

stool smell like burnt rubber which is exactly what hers smells like.

(anyone else have this experience?)

Her fistula is a concern to us but the GI dr. said it wasn't life

threatening and I've read several places that they can heal on their

own but that they take awhile. I'll have to look into that further.

You say my daughter sounds really sick, is it the fistula that makes

you say this? She normally uses the bathroom 2x, has absolutely no

pain, lots of energy, great mood ,etc. You would never guess she has a

disease. (we've actually been doing the " caveman's diet " for a month

previous).

I'm not against medication. Where it's such heavy-duty medication

we're dealing with I really want to make sure that I make an informed

decision and so far, with all the serious side effects, the increase

of reported cancer in children (Not to mention that we don't even know

the long term effects), etc., I haven't felt comfortable with going

that direction yet. Our GI dr. was unwilling to work with us. The only

option he gave us was remicade and that once on it, she wouldn't be

able to get off it. When the direction we're currently going no longer

works then it will be time for remicade.

Sometimes I worry if I'm going the right direction but deep down, for

now anyways, I know that I am. I'm learning to put my faith and trust

in God. I pray daily, several times, for direction and inspiration. My

prayers have been heard and answered so it's with that that I keep

praying and seeking guidance, while monitoring my daughter very

closely. I'm not against medicine. It's just not the direction I feel

we need to go at this point.

Thanks again,

~Kathy

November 11, 2008

Amen Kathy - My pprayers brought me to scd as well and you should

question docs/meds and God will see you all thru -hang in

my 2 daughters would have been on meds for oCD and ADHD - both are

fine without - power of prayer is amazing and don't forget things you

cut out weeks ago stil could be affecting her - anytime I introduced

something I wasn't ready for it threw me for weeks

eileen

10 months scd

>

> Terry,

>

> Thanks for your advice.

>

> After doing some further research I no longer think it's melena

> either. I'm thinking it's because she's been drinking too much grape

> juice (which would also account for her having to use the bathroom a

> few more times). I was also able to find that this does make ones

> stool smell like burnt rubber which is exactly what hers smells

like.

>

> (anyone else have this experience?)

>

> Her fistula is a concern to us but the GI dr. said it wasn't life

> threatening and I've read several places that they can heal on their

> own but that they take awhile. I'll have to look into that further.

> You say my daughter sounds really sick, is it the fistula that makes

> you say this? She normally uses the bathroom 2x, has absolutely no

> pain, lots of energy, great mood ,etc. You would never guess she

has a

> disease. (we've actually been doing the " caveman's diet " for a month

> previous).

>

> I'm not against medication. Where it's such heavy-duty medication

> we're dealing with I really want to make sure that I make an

informed

> decision and so far, with all the serious side effects, the increase

> of reported cancer in children (Not to mention that we don't even

know

> the long term effects), etc., I haven't felt comfortable with going

> that direction yet. Our GI dr. was unwilling to work with us. The

only

> option he gave us was remicade and that once on it, she wouldn't be

> able to get off it. When the direction we're currently going no

longer

> works then it will be time for remicade.

>

> Sometimes I worry if I'm going the right direction but deep down,

for

> now anyways, I know that I am. I'm learning to put my faith and

trust

> in God. I pray daily, several times, for direction and inspiration.

My

> prayers have been heard and answered so it's with that that I keep

> praying and seeking guidance, while monitoring my daughter very

> closely. I'm not against medicine. It's just not the direction I

feel

> we need to go at this point.

>

> Thanks again,

>

> ~Kathy

>

November 11, 2008

Kathy,

My daughter was 8 last April when she got sick. Her GI doctor was

sure she had Crohn's. She missed 6 weeks of school. She had

horrible cramping, blood in her stool, all her joints ached, sores in

her mouth and she also had a fistula.

She was in terrible pain when she had a BM. She had to use the sitz

bath every time.

Luckily, through the prayers of many, we found SCD. We had tried a

couple other diets but SCD started turning her around immedietly.

We follow it TO THE LETTER! She has been on no medications.

She is doing great! She takes " legal " probiotics and vitamins every

day. She is consistantly gaining weight. We monitor her food with

how she is feeling every day. Some days we have to cut back on nuts.

Most of the time she can eat whatever she wants on the diet.

We believe the intro. diet is crucial. We even fall back on that

occasionally if she has a bad day. She is stronger than she's ever

been and played a full season of travel soccer!

I'm wondering if some of the strange stools your daughter is

experiencing is " die off. " All six of us in my family went through

different die off symptoms when we started SCD. Dark unusual looking

stools were common.

I would suggest giving " fanatical " SCD a few weeks. As long as she is

not in a lot of pain or

I love that the only thing in my daughters body is 100% natural. I'm

hoping she'll never be on a medication again.

Have you started making the yogurt yet? I remember that seemed to

speed up her recovery also!

Donna

>

> A little background first:

>

> My 9yod was diagnosed with severe Crohn's Colitis in May. We haven't

> done any medication - yet. We started off doing an elemental diet

with

> Pediasure but stopped because her tummy seemed to hurt afterwards

and

> the 2nd ingredient is sugar. I didn't feel like sugar would help her

> to heal. Then we tried various diets such as low residue, etc. and

> when she would show a serious symptom I would desperately switch to

> something else - so we never did anything consistently. Currently,

we

> are seeing a homeopathic/chiropractor who has her on homeopathic

drops

> as well as supplements and she gets adjusted 1x-2x/wk. Also, he has

> her on basically a caveman's diet. Most of the time I think she's

> doing better, albeit slowly. I *think* she has more color to her

face

> (some have even commented so), she's not in pain, has energy, and

uses

> the bathroom anywhere from 2-5 times/day. 5 days ago we started her

> on scd. (But I'm not sure all her supplements are compliant.)

>

> My concern is this: How will I know when I need to take her into the

> Dr. so they can put her on medication? Her gastroenterologist is

> completely against what we're doing and thinks we're making a huge

> mistake. Sometimes I'm afraid we are. Whenever something is off with

> her it scares me - bad. Here's what's going on: She has a fistula on

> her anus that I'm worried is getting bigger ( she's had it for

> awhile), her bum is red, sorta like diaper rash (which she's also

had

> for awhile), she's not in any pain, has energy, doesn't seem as

pale,

> no fevers, no erythema nodosum (which she had really bad when she

> first got diagnosed), usually uses the bathroom 2-3x/day (last

couple

> of days it has been a few more times). The new concern is that a

week

> ago (before I started scd) she developed a dark green, weird

smelling

> stool. I at first thought it was the raw green smoothie she had &

> green vegetables, but since starting the scd, we've had no greens

and

> her stool continued to smell funny and be dark, dark green. I don't

> think it't because of quick transit time because she'll have it even

> when it's been 6-7 hours since she's gone. Yesterday the color

changed

> from dark green to more of a dark grey and the consistency is

> different than her usual stools. I'm worried that it could be

melena,

> and that her Crohn's has now spread to her upper intestines. I'm

> afraid to take her to the dr. because I know they'll want to put her

> on medications, but I will if I have to but then again, she doesn't

> even seem sick.

>

> Any advice or thoughts would be greatly appreciated!

>

> ~Kathy

>

November 11, 2008

Hi Kathy,

I too have Crohn's/Colitis. I think meds are important- for me it's

not a long term lifestyle or solution. They are a tool to give us a

push to get out of that dreaded danger zone.

I thought I would comment that I think all supplements should be

stopped and checked for legality. And reintroduced one by one slowly.

Also, this diet calls for fanatical adherence and in the begining can

cause major die-off. Some of the tools I have learned to deal with

this and always feeling hungry is I have incorporated some ideas from

the GAPS protocol like rich bone broths and smothering food in ghee-

this has helped with the hunger aspect. We with gut issues have to be

extra careful with some of the ideas that GAPS put fwd like including

Bifidus so keep that in mind as it is illegal on the SCD.

Another thing is before trying big guns for medications like

immuno-suppressants and steroids there is something called

Low-Dose-Naltrexone which is showing very promising results for SOME

people. Here is a website;

lowdosenaltrexone.org

and the yahoo support group is;

http://health.groups.yahoo.com/group/lowdosenaltrexone/

Obviously, I don't know your daughters exact situation etc.. Keep that

in mind. All of this is for you to read..

Another thing is perhaps you can get a list of SCD friendly docs in

your area from Grammy Bauer- I know there is a list somewhere too

maybe someone can locate that?

I would find an open minded GI and if the funds are available I would

also look for a good integrative doctor. A good way to find an

integrative doc is acam.org

It is important to not work out of fear and to use all the tools

available to us to get better and take the best of what the various

modalities have to offer us this includes medication sometimes. All

of this is quite an education and the journey is well worth it. Ask

questions online, you will find that most of the time there will be

someone to share an experience with you- this place is invaluable and

I have made some friends along the way as well.

Jodi

SCD 13 months

Crohn's/Colitis

November 13, 2008

Hi Kathy,I think you are the best judge of how your daughter is doing. From what you describe, it sounds to me like she must be doing better. It takes a lot of time. You have only started SCD five days ago. I'd give it a really good try, being careful to do the intro diet for at least 2-3 days and then slowly easing in to other foods. Have only soft, cooked, veggies and fruits at first, no peels, etc. I feel as you do about the medication. I would not let that one GI doc get you down, there are many others. Can you possibly find an MD who is also a homeopath? That seems to be a popular combination. Check the National Center for Homeopathy website, I think they have a list of homeopaths, and you can scroll down and see if you can find one close to you who is an MD also. I think that can be helpful because it is someone who has the medical background, knowledge, etc, yet is more skilled in using alternative methods. Of course, even these sometimes vary in their expertise, but it's worth it to keep looking until you can find a health care practitioner that you feel comfortable with and that will work with you. The SCD can have amazing results, especially with children. I would also check out all the supplements too. It's likely that some are not legal.

Good luck to you. It is so hard sometimes to know the right thing to do.All the best,Sonya