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

[Guest guest]

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.

>

[Guest guest]

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 likeany 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. MaraIt 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 Cawoodemail: parvus@...From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of smdsmom2008Sent: Friday, August 27, 2010 11:21 AMTo: 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.>