Re: Fear and a three month flare? (Mara)

[Guest guest]

>Last I heard last week he was on 5 - did he suddenly increase to 8?

Because that is a big jump

and 8 in general may be more than his system can deal with right now - and too

much of a

good thing in the probiotic sense can definitely produce a bloody mess like

this. This is why

we do things slowly.

He was planning dividing his dosage between morning and evening when he

did this…so it ended up being 5 in the evening and then the plan was from

that point, 3 in the morning, 2 in the evening. Should he stop the s. boulardi for now?

BTW…he still is not on any other probiotic. We have scdolphilus

waiting in the frig. but weren’t sure about when to introduce it since he

seems so sensitive and is taking the s. boulardi. Suggestions?

My fear exists because I am afraid there is damage being done while he

is off meds and on the diet. Two years ago (pre SCD knowledge) we were trying

to deal with this naturally through gluten free and supplements but of course,

it didn’t help and he actually got worse. It is hard not to remember that

time and resulting colonoscopy a year ago that put us on the med track. I don’t

doubt the diet’s benefits…just struggling with the fear of making a

wrong decision which jeopardizes

his health as we did in the past.

When you suggest gelatin, he is eating the SCD soup which is gelatinous, but are you suggesting he also eat regular jello as prescribed

in the intro diet?

He has never had an enema so this will be

interesting…how long should he hold it

in? What are the benefits of this?

Eileen

Eileen Cawood

email: parvus@...

From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of Mara Schiffren

Sent: Friday, August 27, 2010 8:36

AM

To: BTVC-SCD

Subject: Re: Fear and a

three month flare?

> My son hit the wall yesterday and today...came home for lunch yesterday

and went to bed with fever, chills, sore throat and aches. Today he passed

" a ton of blood " as he so eloquently communicated, and though he

stayed home from work, the fever and chills have abated. I initially attributed

yesterday to yeast die off since he upped his s. boulardi to 5 the night before

and 3 yesterday morning. But with the bloody diarrhea today I recalled hearing

that it is common to have a three month flare. He began the diet the end of May

and here we are, three months later. He has had no blood until this week...he

said he noticed a small amount early in the week.

Last I heard last week he was on 5 - did he suddenly increase to 8? Because

that is a big jump

and 8 in general may be more than his system can deal with right now - and too

much of a

good thing in the probiotic sense can definitely produce a bloody mess like

this. This is why

we do things slowly.

So now you know, sometimes extreme die offs can produce flares, so it is a kind

of mixed

die off flare affair. <g>

Also, think of it this way. This is not the worst thing to happen because this

is how people

begin to learn their tolerances and begin to understand and get a handle on

their illness,

so that they can begin to control their symptoms to a better extent. The

process can be a

messy trial and error - but when you have a reaction like this, it tends to

impact the mind

in a way that both illuminates and changes behavior.

If the blood continues for more than a day, have him start a vitamin E enema

protocol. Get ahold of a baby ear bulb syringe:

http://www.drugstore.com/qxp181505_333181_sespider/rite_aid/ear_syringe_3_oz_capacity.htm

and some vitamin E (higher the

IUs, the easier the task ahead). And empty from 4000-8000IUs of vitamin E into

1 TB of distilled water in a small container. (Cut the tops with a small

scissor

swiped with alcohol rather than popping them with a pin.)

Then, use the ear bulb syringe to draw up the liquid and apply as an enema. Do

this

before bed or at some point during the day when he is less likely to have a

bowel

movement.

Also, keep up the epsom baths. And, as others have said, meat and chicken

broths. And gelatin in

some kind of preparation. Some veggie purees for a few days.

Mara

>

> My first reaction is fear, which I feel literally in my own gut. So what

words of advice and encouragement can you share with me?

And now you know why stress is so bad for IBD/IBS people - because of the

chemical reaction

that it produces where it is felt - in the gut. Which no doubt also triggers

bacteria and then the

anti-inflammatory response.

> Does anyone know why this happens at the three month mark? Should he stop

taking s. boulardi or do anything different from what he has been doing?

Basically, he is eating legal meats, limitted cooked veggies and some cooked

fruit. He is off of eggs though he has been eating the cheesecake; also eats

cheddar cheese. Had some nut flour popovers for the first time in several

weeks, this week.

By the bye, what are nut flour popover? they sound good.

[Guest guest]

>Last I heard last week he was on 5 - did he suddenly increase to 8? Because that is a big jumpand 8 in general may be more than his system can deal with right now - and too much of agood thing in the probiotic sense can definitely produce a bloody mess like this. This is why we do things slowly. He was planning dividing his dosage between morning and evening when he did this…so it ended up being 5 in the evening and then the plan was from that point, 3 in the morning, 2 in the evening.It just ended up being way too much in a 24 hour period. So now he'll know not to do it that way again. Should he stop the s. boulardi for now?Depending on how bad he is continuing to feel, I would either skip or go down to a much lower dose - like 2 or 3 - for several days. BTW…he still is not on any other probiotic. We have scdolphilus waiting in the frig. but weren’t sure about when to introduce it since he seems so sensitive and is taking the s. boulardi. Suggestions?<g> Not today - that's for sure. Wait until he is back up to how he was before this happened - and then take a very small amount to begin. Below what they suggest.And work up really slowly. My fear exists because I am afraid there is damage being done while he is off meds and on the diet. Two years ago (pre SCD knowledge) we were trying to deal with this naturally through gluten free and supplements but of course, it didn’t help and he actually got worse. It is hard not to remember that time and resulting colonoscopy a year ago that put us on the med track. I don’t doubt the diet’s benefits…just struggling with the fear of making a wrong decision which jeopardizeshis health as we did in the past.People with UC get ups and downs like this. Don't worry - this will reverse - and if it caused somemajor die off inadvertently, he'll actually feel a lot better for a while after he gets better. It just feelssucky in the interim. When you suggest gelatin, he is eating the SCD soup which is gelatinous, but are you suggesting he also eat regular jello as prescribed in the intro diet?Yeah - it's a really soft, easy to digest food that also helps as an anti-inflammatory. He has never had an enema so this will be interesting…how long should he hold it in? <g> It's not the kind that comes out. It just should stay in. That's why it is hardly any liquid. Maybe calling itan enema as opposed to a liquid suppository is misleading. So that is why it is suggested to take it when he is not expecting a BM. To help it stay in as long aspossible. So start with a lower dose to make sure it does not cause an involuntary reaction to go to the bathroom. Actually, I've found that it is very soothing and calming internally. But in the middleof a serious flare, things can be very sensitive of course. What are the benefits of this?It promotes fast healing of the rectum/end of the intestinal track and helps to stop thebleeding. You can read up on vitamin E if you like. It helps to heal skin. I've found them to be really effective Mara

[Guest guest]

I know we have discussed this before- the diet does not demand that one stop

meds. In fact, Elaine recommended continuing to take them. However, many people

have stopped them for various reasons.

I noticed that Raman Prassad and Ramacher- in their books- were both on

their medication and SCD at the start. They eventually stopped meds- against

their doctor's advice- after being without symptoms for a long time. This is a

very different course than substituting SCD for medication at the beginning of

the diet.

If you are worried about ongoing damage from not being on meds- and your child

still has symptoms- there is no reason from the SCD standpoint to stop them. The

point is to achieve a level of healing- whatever it takes.

I hate taking meds as much as anyone else. Some have succeeded with stopping

them, but many take medication too. I don't see this as a failure with SCD, but

them all working together. Naturally if someone has bad side effects or meds

don't work- one would question taking them.

I just hope you don't see SCD as an all or none thing, or a failure at this

point if your son needs extra help. I hope that this flare gets done quickly for

him with just the suggested interventions here.

Best wishes,

PJ

>

> > My son hit the wall yesterday and today...came home for lunch yesterday

> and went to bed with fever, chills, sore throat and aches. Today he passed

> " a ton of blood " as he so eloquently communicated, and though he stayed home

> from work, the fever and chills have abated. I initially attributed

> yesterday to yeast die off since he upped his s. boulardi to 5 the night

> before and 3 yesterday morning. But with the bloody diarrhea today I

> recalled hearing that it is common to have a three month flare. He began the

> diet the end of May and here we are, three months later. He has had no blood

> until this week...he said he noticed a small amount early in the week.

>

> Last I heard last week he was on 5 - did he suddenly increase to 8? Because

> that is a big jump

> and 8 in general may be more than his system can deal with right now - and

> too much of a

> good thing in the probiotic sense can definitely produce a bloody mess like

> this. This is why

> we do things slowly.

>

> So now you know, sometimes extreme die offs can produce flares, so it is a

> kind of mixed

> die off flare affair. <g>

>

> Also, think of it this way. This is not the worst thing to happen because

> this is how people

> begin to learn their tolerances and begin to understand and get a handle on

> their illness,

> so that they can begin to control their symptoms to a better extent. The

> process can be a

> messy trial and error - but when you have a reaction like this, it tends to

> impact the mind

> in a way that both illuminates and changes behavior.

>

> If the blood continues for more than a day, have him start a vitamin E enema

>

> protocol. Get ahold of a baby ear bulb syringe:

>

> http://www.drugstore.com/qxp181505_333181_sespider/rite_aid/ear_syringe_3_oz

> _capacity.htm

>

> and some vitamin E (higher the

> IUs, the easier the task ahead). And empty from 4000-8000IUs of vitamin E

> into

> 1 TB of distilled water in a small container. (Cut the tops with a small

> scissor

> swiped with alcohol rather than popping them with a pin.)

> Then, use the ear bulb syringe to draw up the liquid and apply as an enema.

> Do this

> before bed or at some point during the day when he is less likely to have a

> bowel

> movement.

>

> Also, keep up the epsom baths. And, as others have said, meat and chicken

> broths. And gelatin in

> some kind of preparation. Some veggie purees for a few days.

>

> Mara

>

> >

> > My first reaction is fear, which I feel literally in my own gut. So what

> words of advice and encouragement can you share with me?

>

> And now you know why stress is so bad for IBD/IBS people - because of the

> chemical reaction

> that it produces where it is felt - in the gut. Which no doubt also triggers

> bacteria and then the

> anti-inflammatory response.

>

> > Does anyone know why this happens at the three month mark? Should he stop

> taking s. boulardi or do anything different from what he has been doing?

> Basically, he is eating legal meats, limitted cooked veggies and some cooked

> fruit. He is off of eggs though he has been eating the cheesecake; also eats

> cheddar cheese. Had some nut flour popovers for the first time in several

> weeks, this week.

>

> By the bye, what are nut flour popover? they sound good.

>

[Guest guest]

Maybe the LDN would help. Yes, I do understand. He is a young adult now, and

makes his own decisions. I just did not want him to think the diet was an all or

none thing. I hope he feels better soon.

PJ

--- BTVC-SCD , Mara Schiffren wrote:

>

> Well, you should look into LDN - it seems to help those of us who don't

> do well on the conventional drugs - and it doesn't feel anything like

> any of those other drugs.

>

> Crystal, on the LDN site, will send you around a list of docs who prescribe -

> there might be one in your area.

>

> Mara

>

>

>

>

> >

> >

> > It was his decision to stop (there is only so much advice that a 19 yo son

will take from his momJ) because he had read on his own that they can slow down

the healing. The drugs were not helping him anyway…still had the loose stools

and gurgling, low energy, after months of Asacol and Imuran. The several weeks

of Prednisone did nothing but make him look weird and feel wired. So he figured

why stay on them if there was no benefit being experienced. The GI was pointing

him in the direction of Remicade when we discovered SCD. I think that if he had

experienced a positive change in his symptoms, he might still be on the meds so

it is a blessing in my mind, that he didn't…we might not have found out about

SCD!

> >

> > Eileen Cawood

> > email: parvus@...

> > From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf

Of smdsmom2008

> > Sent: Friday, August 27, 2010 11:21 AM

> > To: BTVC-SCD

> > Subject: Re: Fear and a three month flare? (Mara)

> >

> >

> > I know we have discussed this before- the diet does not demand that one stop

meds. In fact, Elaine recommended continuing to take them. However, many people

have stopped them for various reasons.

> >

> > I noticed that Raman Prassad and Ramacher- in their books- were both

on their medication and SCD at the start. They eventually stopped meds- against

their doctor's advice- after being without symptoms for a long time. This is a

very different course than substituting SCD for medication at the beginning of

the diet.

> >

> > If you are worried about ongoing damage from not being on meds- and your

child still has symptoms- there is no reason from the SCD standpoint to stop

them. The point is to achieve a level of healing- whatever it takes.

> >

> > I hate taking meds as much as anyone else. Some have succeeded with stopping

them, but many take medication too. I don't see this as a failure with SCD, but

them all working together. Naturally if someone has bad side effects or meds

don't work- one would question taking them.

> >

> > I just hope you don't see SCD as an all or none thing, or a failure at this

point if your son needs extra help. I hope that this flare gets done quickly for

him with just the suggested interventions here.

> >

> > Best wishes,

> > PJ

> >

> >

> > >

> > > > My son hit the wall yesterday and today...came home for lunch yesterday

> > > and went to bed with fever, chills, sore throat and aches. Today he passed

> > > " a ton of blood " as he so eloquently communicated, and though he stayed

home

> > > from work, the fever and chills have abated. I initially attributed

> > > yesterday to yeast die off since he upped his s. boulardi to 5 the night

> > > before and 3 yesterday morning. But with the bloody diarrhea today I

> > > recalled hearing that it is common to have a three month flare. He began

the

> > > diet the end of May and here we are, three months later. He has had no

blood

> > > until this week...he said he noticed a small amount early in the week.

> > >

> > > Last I heard last week he was on 5 - did he suddenly increase to 8?

Because

> > > that is a big jump

> > > and 8 in general may be more than his system can deal with right now - and

> > > too much of a

> > > good thing in the probiotic sense can definitely produce a bloody mess

like

> > > this. This is why

> > > we do things slowly.

> > >

> > > So now you know, sometimes extreme die offs can produce flares, so it is a

> > > kind of mixed

> > > die off flare affair. <g>

> > >

> > > Also, think of it this way. This is not the worst thing to happen because

> > > this is how people

> > > begin to learn their tolerances and begin to understand and get a handle

on

> > > their illness,

> > > so that they can begin to control their symptoms to a better extent. The

> > > process can be a

> > > messy trial and error - but when you have a reaction like this, it tends

to

> > > impact the mind

> > > in a way that both illuminates and changes behavior.

> > >

> > > If the blood continues for more than a day, have him start a vitamin E

enema

> > >

> > > protocol. Get ahold of a baby ear bulb syringe:

> > >

> > >

http://www.drugstore.com/qxp181505_333181_sespider/rite_aid/ear_syringe_3_oz

> > > _capacity.htm

> > >

> > > and some vitamin E (higher the

> > > IUs, the easier the task ahead). And empty from 4000-8000IUs of vitamin E

> > > into

> > > 1 TB of distilled water in a small container. (Cut the tops with a small

> > > scissor

> > > swiped with alcohol rather than popping them with a pin.)

> > > Then, use the ear bulb syringe to draw up the liquid and apply as an

enema.

> > > Do this

> > > before bed or at some point during the day when he is less likely to have

a

> > > bowel

> > > movement.

> > >

> > > Also, keep up the epsom baths. And, as others have said, meat and chicken

> > > broths. And gelatin in

> > > some kind of preparation. Some veggie purees for a few days.

> > >

> > > Mara

> > >

> > > >

> > > > My first reaction is fear, which I feel literally in my own gut. So what

> > > words of advice and encouragement can you share with me?

> > >

> > > And now you know why stress is so bad for IBD/IBS people - because of the

> > > chemical reaction

> > > that it produces where it is felt - in the gut. Which no doubt also

triggers

> > > bacteria and then the

> > > anti-inflammatory response.

> > >

> > > > Does anyone know why this happens at the three month mark? Should he

stop

> > > taking s. boulardi or do anything different from what he has been doing?

> > > Basically, he is eating legal meats, limitted cooked veggies and some

cooked

> > > fruit. He is off of eggs though he has been eating the cheesecake; also

eats

> > > cheddar cheese. Had some nut flour popovers for the first time in several

> > > weeks, this week.

> > >

> > > By the bye, what are nut flour popover? they sound good.

> > >

> >

> >

> >

> >

>