How long is too long?

[Guest guest]

Hello everyone... Just general question (because I can't take it any longer...) how long is this last simptom - blood in UC will present? What is your experience - the longest you had it? When is time to be really allert and do something?

Thank you,

, son 12 y/o UC 11/06, SCD 11/07

[Guest guest]

It took 3 1/2 years on SCD to stop it. When you see it, that is the time to be

alert. Ron

>

> Hello everyone... Just general question (because I can't take it any

longer...) how long is this last simptom - blood in UC will present? What is

your experience - the longest you had it? When is time to be really allert and

do something?

>  

> Thank you,

> , son 12 y/o UC 11/06, SCD 11/07

>

[Guest guest]

You mean to watch it? How can I be an alert? I am doing EVERYTHING, honestly can't think what I hadn't done yet.... it will not get better... since March...

Thank you,

[Guest guest]

Hi ,

I can really relate to what you are going through. I have Crohn's Disease and

have been bleeding for a few years now. I have just started this diet and am

trying to be patient because I know it will take a long time to heal. In the

meantime, it is important to use your doctors when necessary for treatment- if

you feel that you are losing too much blood, you should really follow up with

your doctor and have your blood levels checked. I tried to hang in there as long

as I could, but ended up getting a transfusion last week. The great news is that

I am feeling more energic, less lightheaded, and will keep on doing SCD! I am

not suggesting you need a transfusion, but be sure to take care of yourself and

get your medications adjusted if needed- it seems like Elaine always reinforced

this!

Best Wishes,

Joanna

SCD 6 weeks, Crohn's Disease 1992

>

[Guest guest]

Thank you Joanna,

I am glad you can stick to it, because I know - diet does work! This is my 12 y/o, who has UC and he was on SCD for 2 years now, so... grrrrrr.... He seems OK, I mean his energy level and colors, but you know... he is bleeding!!!

Subject: Re: How long is too long?To: BTVC-SCD Date: Tuesday, November 3, 2009, 12:57 PM

Hi ,I can really relate to what you are going through. I have Crohn's Disease and have been bleeding for a few years now. I have just started this diet and am trying to be patient because I know it will take a long time to heal. In the meantime, it is important to use your doctors when necessary for treatment- if you feel that you are losing too much blood, you should really follow up with your doctor and have your blood levels checked. I tried to hang in there as long as I could, but ended up getting a transfusion last week. The great news is that I am feeling more energic, less lightheaded, and will keep on doing SCD! I am not suggesting you need a transfusion, but be sure to take care of yourself and get your medications adjusted if needed- it seems like Elaine always reinforced this!Best Wishes,JoannaSCD 6 weeks, Crohn's Disease 1992>

[Guest guest]

Have you tried Carlson's vitamin E suppositories for him?Also Epsom baths really help to soothe the physicalinternal symptoms that come with bleedingThank you Joanna,I am glad you can stick to it, because I know - diet does work! This is my 12 y/o, who has UC and he was on SCD for 2 years now, so... grrrrrr.... He seems OK, I mean his energy level and colors, but you know... he is bleeding!!!

[Guest guest]

Hi Mara, no I have not tried Vit E - where may I get them? Epsom salt he does not like - it makes him very tired...

Thank you Joanna,

I am glad you can stick to it, because I know - diet does work! This is my 12 y/o, who has UC and he was on SCD for 2 years now, so... grrrrrr.... He seems OK, I mean his energy level and colors, but you know... he is bleeding!!!

[Guest guest]

,

The epsom salts baths will do that. Maybe he can do it right before bed and it

will help him sleep.

Amelia.

>

>

>

>

>

>

>

>

>

> Thank you Joanna,

> I am glad you can stick to it, because I know - diet does work! This is my 12

y/o, who has UC and he was on SCD for 2 years now, so... grrrrrr.... He seems

OK, I mean his energy level and colors, but you know... he is bleeding!!!

>  

>

>

[Guest guest]

,

My 14 year old son is having the same problem. I'm trying to not panic, since

we've only been on the diet for 2-1/2 months. But it was almost gone and then

came back. He seems fine, except for that. If I figure something out that

works for him, I'll let you know!

Liz

>

> Hello everyone... Just general question (because I can't take it any

longer...) how long is this last simptom - blood in UC will present? What is

your experience - the longest you had it? When is time to be really allert and

do something?

>  

> Thank you,

> , son 12 y/o UC 11/06, SCD 11/07

>

[Guest guest]

Hi Mara, no I have not tried Vit E - where may I get them? Online. Just google carlson's vitamin EEpsom salt he does not like - it makes him very tired...Maybe have him take them right before bed - he'll sleep great. Mara

[Guest guest]

Maybe have him take them right before bedJust to clarify: Take them as in take a BATH, not take the actual salt, right? Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)No meds!

[Guest guest]

Yes, take them as a bath. If you drink them, they are a powerful

laxative....yuk!!

PJ

>

> > Maybe have him take them right before bed

>

>

> Just to clarify: Take them as in take a BATH, not take the actual

> salt, right?

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> No meds!

>

[Guest guest]

RIght.MaraMaybe have him take them right before bedJust to clarify: Take them as in take a BATH, not take the actual salt, right?Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)No meds!

[Guest guest]

If you drink them, they are a powerful laxative....yuk!!That's what I thought. I guess the way it was phrased just confused me. Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)No meds!

[Guest guest]

Dear Mara, just to make sure - am I looking for suppositories or just capsules?

Another thing - his blood is like very fresh and bright - maybe it' " fishers "

(spell)? How do you recognize them... he is having pain after BM and needs to

sit on the bed for a few moments.

Thank you so much for all the quick answers,

,

son Matt 12 y/0 UC 3 years, SCD 2 years

>

> >

> >

> > Hi Mara, no I have not tried Vit E - where may I get them?

> >

> >

> >

> > Online. Just google carlson's vitamin E

> >

> > Epsom salt he does not like - it makes him very tired...

>

>

>

> Maybe have him take them right before bed - he'll

> sleep great.

>

> Mara

>

[Guest guest]

You don't get fissures with UC - that's a crohn's or crohn's colitis

kind of thing.

It's bright red because the ulcerations are close to the rectum

and it's fresh blood. And this causes internal achiness -

and the epsom baths really help mitigate that effect. As well

as helping the entire body detox.

You need to get him to start eating more food that have

anti-inflammatories propertiess --- daily broths - chicken and

beef, soft foods like purees and coconut oil. It won't be

the most stimulating diet for a little while, but it will help to go

back to

intro and level one food preparation for a while.

This is what you want:

http://www.vitacost.com/Carlson-Key-E-Suppositories-with-Natural-Vitamin-E?csrc=\

BRDC-088395005541

You should also give him vitamin E by mouth since the suppositories

don't have a very high vitamin E amount, it just delivers it direct to

the

spot in a coconut shell, which is also helpful. And I would add in

vitamin d3.

And explore the possibility of LDN - low dose naltrexone - with your

physician.

Mara

> Dear Mara, just to make sure - am I looking for suppositories or

> just capsules? Another thing - his blood is like very fresh and

> bright - maybe it' " fishers " (spell)? How do you recognize them...

> he is having pain after BM and needs to sit on the bed for a few

> moments.

> Thank you so much for all the quick answers,

> ,

> son Matt 12 y/0 UC 3 years, SCD 2 years

>

>

>>

>>>

>>>

>>> Hi Mara, no I have not tried Vit E - where may I get them?

>>>

>>>

>>>

>>> Online. Just google carlson's vitamin E

>>>

>>> Epsom salt he does not like - it makes him very tired...

>>

>>

>>

>> Maybe have him take them right before bed - he'll

>> sleep great.

>>

>> Mara

>>

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

OK, just to get things straight... He needs to go back to Intro/Stage 1.. and so

on? OR, just to eat me pureed food with coconut oil instead of oil (where

possible) and no matter what have a cup of broth every day (because I am using

this broth to make soup and he has it every day). May he still have almond flour

- he loves sweets and cheated a little not long time age. We had very long and

" scary " conversation - I hope it's in the past.

About vitamins - he is having Multivitamins from Lucy's kitchen, would this be

enough. And good news, I found suppositories in our local Health Food store.

Sorry for so manu questions, I am just " needy " right now...

Thank you,

,

son Matt 12 y/0 UC 3 years, SCD 2 years

>

> You don't get fissures with UC - that's a crohn's or crohn's colitis

> kind of thing.

>

> It's bright red because the ulcerations are close to the rectum

> and it's fresh blood. And this causes internal achiness -

> and the epsom baths really help mitigate that effect. As well

> as helping the entire body detox.

>

> You need to get him to start eating more food that have

> anti-inflammatories propertiess --- daily broths - chicken and

> beef, soft foods like purees and coconut oil. It won't be

> the most stimulating diet for a little while, but it will help to go

> back to

> intro and level one food preparation for a while.

>

> This is what you want:

>

>

http://www.vitacost.com/Carlson-Key-E-Suppositories-with-Natural-Vitamin-E?csrc=\

BRDC-088395005541

>

> You should also give him vitamin E by mouth since the suppositories

> don't have a very high vitamin E amount, it just delivers it direct to

> the

> spot in a coconut shell, which is also helpful. And I would add in

> vitamin d3.

>

> And explore the possibility of LDN - low dose naltrexone - with your

> physician.

>

> Mara

[Guest guest]

Hi ,

Hang in there. It sounds like you are doing all the right things

to help your son. A lot of people with bowel disease report that bleeding is

the last symptom to heal. I am inclined to think that ‘cheating’

may have put Matt into a flare, or exacerbated his symptoms. As you discussed

with him fanatical adherence is required to heal. It’s got to be so

difficult for a teenager to stick to the diet…I know I would have had a

hard time at that age!

I have been on the SCD for 5 years. The other day I had blood in

my stool after eating too much cabbage (it was the 1st time I’ve

eaten cabbage in 5 years). I had not had blood in my stool for several years

and was I ever freaked out. So I ate broth, yogurt and scrambled eggs for a day

and was fine. It can take years to heal the gut. I recall someone posted here

that bleeding for them did not stop until 3 ½ years on the SCD.

I also take Freeda Multi Vitamins  as well as Freeda B-Complex –

they are helpful. I second Mara’s recommendation to make sure he also

takes Vitamin D3. I don’t know the dosage for a 12 year old. I take 4,000

IU/day (I’m 55 and weigh 100 pounds). A blood test can determine if he is

deficient in Vitamin D3.

Try not to panic – it must be difficult for you to see

your dear son with symptoms. Don’t hesitate to take him to his doctor if

need be.

Carol

CD 21 yrs  SCD 5 yrs

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of Yuliya66

OK, just to get things straight... He needs to

go back to Intro/Stage 1.. and so on? OR, just to eat me pureed food with

coconut oil instead of oil (where possible) and no matter what have a cup of

broth every day (because I am using this broth to make soup and he has it every

day). May he still have almond flour - he loves sweets and cheated a little not

long time age. We had very long and " scary " conversation - I hope it's

in the past.

About vitamins - he is having Multivitamins from Lucy's kitchen, would this be

enough. And good news, I found suppositories in our local Health Food store.

[Guest guest]

> OK, just to get things straight... He needs to go back to Intro/

> Stage 1.. and so on?

Yeah - I would advise it for a few days, just to help his system settle

down, not long term, but with painful BMs, it will help to take the edge

off his intestines and put let stress on it giving it some space to

heal.

> OR, just to eat me pureed food with coconut oil instead of oil

> (where possible)

coconut oil can be on lots of things - not just pureed food. Like, I

bake

apples and stuff the holes with berries of one sort or another and top

with coconut oil. It's also good mixed with butter as a spread, and

in casseroles - like pumpkin/winter squash casserole, etc.

> and no matter what have a cup of broth every day (because I am using

> this broth to make soup and he has it every day).

Yes.

> May he still have almond flour

well can you make stuff like cheesecake without the crust and pumpkin

pie

without the crust for a little while.

and then add back in nut butters and then flour.

things like almond milk would still be all right, however,

since that is strained.

> - he loves sweets and cheated a little not long time age.

How long ago? I'm not sure from what you write how long the

severe bleeding has

been going on - because cheating, obviously, could be the

cause of this episode of bleeding. And it wouldn't necessarily

happen immediately afterwards - IME, these reactions develop

over several days to two weeks -( as the bugs increase and

then breach the barrier of the intestinal wall, causing inflammatiory

cycle to begin)- and then can go on for a long

while.

> We had very long and " scary " conversation - I hope it's in the past.

Well if the cheating was the cause of this latest jag of painful

bleeding

and you point that out as cause and effect, and he realizes now that

if he does cheat, this is the result, it might effect a change.

> About vitamins - he is having Multivitamins from Lucy's kitchen,

> would this be enough.

well, I would add in some Vitamin E and D3. There's a theory that

vitamin E helps immune function.

http://www.ncbi.nlm.nih.gov/pubmed/9330293

And vitamin D3 is the sunshine drug -

and we all get a lot less of that in the winter.

also **circumin** - this is the essence of turmeric - and it is an

excellent natural

anti-inflammatory. you can get that at any Health food store.

> And good news, I found suppositories in our local Health Food store.

>

> Sorry for so manu questions, I am just " needy " right now...

That's understandable.

Hope this helps.

Mara

> Thank you,

> ,

> son Matt 12 y/0 UC 3 years, SCD 2 years

>

>

>>

>> You don't get fissures with UC - that's a crohn's or crohn's colitis

>> kind of thing.

>>

>> It's bright red because the ulcerations are close to the rectum

>> and it's fresh blood. And this causes internal achiness -

>> and the epsom baths really help mitigate that effect. As well

>> as helping the entire body detox.

>>

>> You need to get him to start eating more food that have

>> anti-inflammatories propertiess --- daily broths - chicken and

>> beef, soft foods like purees and coconut oil. It won't be

>> the most stimulating diet for a little while, but it will help to go

>> back to

>> intro and level one food preparation for a while.

>>

>> This is what you want:

>>

>>

http://www.vitacost.com/Carlson-Key-E-Suppositories-with-Natural-Vitamin-E?csrc=\

BRDC-088395005541

>>

>> You should also give him vitamin E by mouth since the suppositories

>> don't have a very high vitamin E amount, it just delivers it direct

>> to

>> the

>> spot in a coconut shell, which is also helpful. And I would add in

>> vitamin d3.

>>

>> And explore the possibility of LDN - low dose naltrexone - with your

>> physician.

>>

>> Mara

>

>

>

> ------------------------------------

>

>

[Guest guest]

Sound's like a plan to me.... We'll start immediatelly...

Thank you so much...

> OK, just to get things straight... He needs to go back to Intro/ > Stage 1.. and so on?Yeah - I would advise it for a few days, just to help his system settledown, not long term, but with painful BMs, it will help to take the edgeoff his intestines and put let stress on it giving it some space to heal.> OR, just to eat me pureed food with coconut oil instead of oil > (where possible)coconut oil can be on lots of things - not just pureed food. Like, I bakeapples and stuff the holes with berries of one sort or another and topwith coconut oil. It's also good mixed with butter as a spread, andin casseroles - like pumpkin/winter squash casserole, etc.> and no matter what have a cup of broth every day (because I am using > this broth to make soup and he has it every day).Yes.> May he still

have almond flourwell can you make stuff like cheesecake without the crust and pumpkin piewithout the crust for a little while.and then add back in nut butters and then flour.things like almond milk would still be all right, however,since that is strained.> - he loves sweets and cheated a little not long time age.How long ago? I'm not sure from what you write how long thesevere bleeding hasbeen going on - because cheating, obviously, could be thecause of this episode of bleeding. And it wouldn't necessarilyhappen immediately afterwards - IME, these reactions developover several days to two weeks -( as the bugs increase andthen breach the barrier of the intestinal wall, causing inflammatiorycycle to begin)- and then can go on for a longwhile.> We had very long and "scary" conversation - I hope it's in the past.Well if the cheating was the cause of

this latest jag of painful bleedingand you point that out as cause and effect, and he realizes now thatif he does cheat, this is the result, it might effect a change.> About vitamins - he is having Multivitamins from Lucy's kitchen, > would this be enough.well, I would add in some Vitamin E and D3. There's a theory thatvitamin E helps immune function.http://www.ncbi. nlm.nih.gov/ pubmed/9330293And vitamin D3 is the sunshine drug -and we all get a lot less of that in the winter.also **circumin** - this is the essence of turmeric - and it is an excellent naturalanti-inflammatory. you can get that at any Health food store.> And good news, I found suppositories in our local Health Food store.>> Sorry for so manu questions, I am just "needy" right now...That's

understandable.Hope this helps.Mara> Thank you,> ,> son Matt 12 y/0 UC 3 years, SCD 2 years>> >>>> You don't get fissures with UC - that's a crohn's or crohn's colitis>> kind of thing.>>>> It's bright red because the ulcerations are close to the rectum>> and it's fresh blood. And this causes internal achiness ->> and the epsom baths really help mitigate that effect. As well>> as helping the entire body detox.>>>> You need to get him to start eating more food that have>> anti-inflammatories propertiess --- daily broths - chicken and>>

beef, soft foods like purees and coconut oil. It won't be>> the most stimulating diet for a little while, but it will help to go>> back to>> intro and level one food preparation for a while.>>>> This is what you want:>>>> http://www.vitacost .com/Carlson- Key-E-Suppositor ies-with- Natural-Vitamin- E?csrc=BRDC- 088395005541>>>> You should also give him vitamin E by mouth since the suppositories>> don't have a very high vitamin E amount, it just delivers it direct >> to>> the>> spot in a coconut shell, which is also helpful. And I would add in>> vitamin d3.>>>> And explore the possibility of LDN - low dose naltrexone - with your>>

physician.>>>> Mara>>>> ------------ --------- --------- ------>>