Re: healing question

[Guest guest]

did you have biopsies that were tested. it could be no inflammation is showing

but that there is still inflammation further down in the tissues.

Mara

---- Original message ----

>Date: Sun, 12 Oct 2008 22:26:39 -0000

>

>Subject: healing question

>To: BTVC-SCD

>

>since my endoscopy/colonoscopy showed no inflammation 2 weeks ago-

>which is awesome for 9 months in ( I had planned on 2 years as the book

>said) ....but everyone keeps asking then why do you still have

>symptoms???

>I'm not sure of what the answer is except that the diet takes time and

>it takes time to heal- but scientifically if the healing is showing on

>the scopes why do I still have ups/downs???? anyone know????????

>thanks eileen

>Doctors answer is hypersensitive intestines for which we're hoping

>seratonin works -but why are they hypersensitive??? and weren't ever

>before???? what is going on in there????

>

>

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

>

>

[Guest guest]

Hi Eileen,

From what I have learned over the past 18 years from various doctors

(GI's) around the world- living with advanced Crohn's/Colitis.. It is

very important to listen and evaluate the patient clinically.

Sometimes people with IBS don't show inflammation or anything visible

on tests. It does not mean they do not experience symptoms. In fact

I think many of our issues start with no visible degeneration/damage

and if we would preempt when we first start feeling crappy by doing

the SCD we would bypass much suffering and not get to these ridiculous

advanced states of noticeable disease. I think you were in the

begining throws of this nightmare and started the diet in the nick of

time.

My GI had a patient that had 13 fistulas and it was never visible on

not one CT. He ran a marathon with this. One day he felt bad and so

on. How odd is that? When I had a bowel obstruction it was not

visible on the CT. They did however see -significant- back-up on a

regular XRAY. One year I had so much " liquid " in my bowel on my CT

image my doctor was surprised I was walking.

Why are you experiencing symptoms 9 months in? Who knows. Why am I

experiencing issues? I think it has to do with years of eating crappy

food- the Standard American Diet and my gut ecology being completely

out of whack. Often times gut ecology is so imbalanced that yeast

issues are present with other pathogens/microbes or even parasites.

They feed one another- what makes this even more complicated is that

the housing structures of these microbes are called biofilms. Just

because we eradicate the actual bacteria is does not mean we eradicate

the biofilms- which are notoriously stubborn and know how to survive

even the harshest conditions. Conventional labs are worth zilch in

this arena so it is important to go with some of the private labs as

their standards of testing and incubation of the specimen differs than

mainstream. Sometimes when stool is not firm or too much gas is

present it is important to exclude things like SIBO. Sometimes it

just takes time to get yeast under control which I think is part of

your issue example; odd vaginal itchiness, different inflammation like

your finger or your sinuses acting up- that to me all points to yeast.

Which I think is really one of the main ingenious points behind the

SCD is to restore gut ecology. Much of our health depends on that.

Looking for a diagnosis is a wild goose chase unless you have specific

bothersome symptoms that you haven't addressed. In General you don't

want it to get to that point and get a name. You already know you

have Celiacs and you did have corrosion in your intestine. It's

-healing-. It could still be sensitive. You could be sensitive.

Some people take longer to proceed on this diet. I have a feeling

-for me- 2 years will just be the begining as I have so much damage

and side line issues and complications.

Some people say SCD is a cure. I am happy SCD just helps me manage

these horrible symptoms. I hope it cures me and gives me my life back

too.

Jodi

SCD 12 months

Crohn's/Colitis

[Guest guest]

I called doc's office and his receptionist said if it had been 6 days

before he called me that he had the biopsies before calling - hope

she's right - that seemed quick compared to the past and to other

peoples????

thanks

eileen

>

> did you have biopsies that were tested. it could be no

inflammation is showing but that there is still inflammation further

down in the tissues.

>

> Mara

>

> ---- Original message ----

> >Date: Sun, 12 Oct 2008 22:26:39 -0000

> >

> >Subject: healing question

> >To: BTVC-SCD

> >

> >since my endoscopy/colonoscopy showed no inflammation 2 weeks ago-

> >which is awesome for 9 months in ( I had planned on 2 years as the

book

> >said) ....but everyone keeps asking then why do you still have

> >symptoms???

> >I'm not sure of what the answer is except that the diet takes time

and

> >it takes time to heal- but scientifically if the healing is

showing on

> >the scopes why do I still have ups/downs???? anyone know????????

> >thanks eileen

> >Doctors answer is hypersensitive intestines for which we're hoping

> >seratonin works -but why are they hypersensitive??? and weren't

ever

> >before???? what is going on in there????

> >

> >

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

> >

> >

[Guest guest]

thank you again Jodi :-) i know you're sick of hearing me ask why

lately - but i do wonder ,as we all do when life will be back " to

normal " and with everyone asking my results it's definately making me

think more - thank you for your insight

you really feel the fingers gums etc are yeast related??? and what

else would i do but the yogurt, acid, s boullardi and chill out on

yeasty foods - and for how long?? - it is confusing!!!!!!

thanks again

eileen

>

> Hi Eileen,

>

> From what I have learned over the past 18 years from various doctors

> (GI's) around the world- living with advanced Crohn's/Colitis.. It

is

> very important to listen and evaluate the patient clinically.

> Sometimes people with IBS don't show inflammation or anything

visible

> on tests. It does not mean they do not experience symptoms. In

fact

> I think many of our issues start with no visible degeneration/damage

> and if we would preempt when we first start feeling crappy by doing

> the SCD we would bypass much suffering and not get to these

ridiculous

> advanced states of noticeable disease. I think you were in the

> begining throws of this nightmare and started the diet in the nick

of

> time.

>

> My GI had a patient that had 13 fistulas and it was never visible on

> not one CT. He ran a marathon with this. One day he felt bad and

so

> on. How odd is that? When I had a bowel obstruction it was not

> visible on the CT. They did however see -significant- back-up on a

> regular XRAY. One year I had so much " liquid " in my bowel on my CT

> image my doctor was surprised I was walking.

>

> Why are you experiencing symptoms 9 months in? Who knows. Why am I

> experiencing issues? I think it has to do with years of eating

crappy

> food- the Standard American Diet and my gut ecology being completely

> out of whack. Often times gut ecology is so imbalanced that yeast

> issues are present with other pathogens/microbes or even parasites.

> They feed one another- what makes this even more complicated is that

> the housing structures of these microbes are called biofilms. Just

> because we eradicate the actual bacteria is does not mean we

eradicate

> the biofilms- which are notoriously stubborn and know how to survive

> even the harshest conditions. Conventional labs are worth zilch in

> this arena so it is important to go with some of the private labs as

> their standards of testing and incubation of the specimen differs

than

> mainstream. Sometimes when stool is not firm or too much gas is

> present it is important to exclude things like SIBO. Sometimes it

> just takes time to get yeast under control which I think is part of

> your issue example; odd vaginal itchiness, different inflammation

like

> your finger or your sinuses acting up- that to me all points to

yeast.

> Which I think is really one of the main ingenious points behind the

> SCD is to restore gut ecology. Much of our health depends on that.

>

> Looking for a diagnosis is a wild goose chase unless you have

specific

> bothersome symptoms that you haven't addressed. In General you

don't

> want it to get to that point and get a name. You already know you

> have Celiacs and you did have corrosion in your intestine. It's

> -healing-. It could still be sensitive. You could be sensitive.

>

> Some people take longer to proceed on this diet. I have a feeling

> -for me- 2 years will just be the begining as I have so much damage

> and side line issues and complications.

>

> Some people say SCD is a cure. I am happy SCD just helps me manage

> these horrible symptoms. I hope it cures me and gives me my life

back

> too.

>

> Jodi

> SCD 12 months

> Crohn's/Colitis

>

[Guest guest]

This was once explained to me as being something similar to the phantom

pain experienced by amputees, or even RLS. I think sometimes with

severe long term pain, the mind still feels pain, after the irritation

is gone. I also realize that Crohn's affects all layers of the gut, so

possibly the inflammation is not totally visible from a scope. I know

that sometimes nerves have some residual calcification, that cause pain

long after the healing process takes place,family members have

experienced this post surgery. I think that no visible inflammation

does not necessarily mean no healing is taking place. Just like when

you cut yourself, healing hurts and itches. Just opinion, but this was

what I thought when I was experiencing this. I had little or no

noticeable GI pain, until SCD, but I think I just failed to notice

because in my case the Crohn's Arthritis was more painful, and was head

to toe. All of these symptoms got better and far between as time went

on.

[Guest guest]

Eileen

I can comment on the hypersensitive digestive tract issue. My gastroenterologist has mentioned this condition to me several times; I have it too. Apparently a lot of people develop this condition, as a result of having digestive disorders or for other reasons. If we have hypersensitive or oversensitive digestive tracts, then the normal digestive processes, particularly peristalsis, triggers pain or a heightened awareness. My doctor has told me that once you get this hypersensitivity, it isn't likely to go away. The nerve/pain pathways are established -- or something like that [grin].

My gastroenterologist spent 20 minutes with me not long after I was diagnosed showing me where all my digestive organs are located, and where I was likely to feel pain. I'd looked at anatomy illustrations, so had a good idea of what was where, but he had me feel the locations on my body, which helped considerably. He also made sure I was clear on when I should just ignore the pain or muscle spasms (due to this hypersensitivity and my functional upper GI disorders) and when I needed to make an appointment to see him or get myself to the ER. I have really appreciated his spending this time with me, since I get a lot of bad days, digestively-speaking. I don't panic and worry needlessly, nor take up my doctors' time when all I'm feeling is how my digestion now works.

Basically my digestion doesn't work the same as it used to, and my nervous system is faulty as well. I've learned to accept the ups and downs of my symptoms. I have bad days fairly often, even after 5 years on SCD. But I know the cause, and I stick to the foods that my body tolerates the best, so that I'm not completely incapacitated by my bad days. My current bad days are still a huge improvement from the bad days when I was first diagnosed and started SCD.

Kim M.

SCD 5 years

Sphincter of Oddi dysfunction & other upper GI malfunctions 2+ years

neurological issues 2+ years

>>>>>>>>>>>>.

Doctors answer is hypersensitive intestines for which we're hoping seratonin works -but why are they hypersensitive??? and weren't ever before???? what is going on in there????

[Guest guest]

thank you - I was thinking it must be deeper - and still healing even

though it's looking good scope wise

eileen

>

> This was once explained to me as being something similar to the

phantom

> pain experienced by amputees, or even RLS. I think sometimes with

> severe long term pain, the mind still feels pain, after the

irritation

> is gone. I also realize that Crohn's affects all layers of the gut,

so

> possibly the inflammation is not totally visible from a scope. I

know

> that sometimes nerves have some residual calcification, that cause

pain

> long after the healing process takes place,family members have

> experienced this post surgery. I think that no visible inflammation

> does not necessarily mean no healing is taking place. Just like

when

> you cut yourself, healing hurts and itches. Just opinion, but this

was

> what I thought when I was experiencing this. I had little or no

> noticeable GI pain, until SCD, but I think I just failed to notice

> because in my case the Crohn's Arthritis was more painful, and was

head

> to toe. All of these symptoms got better and far between as time

went

> on.

>

[Guest guest]

thanks for your insight Kim -he did not mention it not going away -

he seems hopeful that increasing the seratonin will help - have you

ever tried that ??? I know you have a lot of extra stuff going on so

not sure if you can, but also wondering if you ever tried ???

I'm trying using L-tyrptophan to keep it natural instead of

prescription lexapro as he recommended

thanks

eileen

>

> Eileen

>

> I can comment on the hypersensitive digestive tract issue. My

gastroenterologist has mentioned this condition to me several times;

I have it too. Apparently a lot of people develop this condition, as

a result of having digestive disorders or for other reasons. If we

have hypersensitive or oversensitive digestive tracts, then the

normal digestive processes, particularly peristalsis, triggers pain

or a heightened awareness. My doctor has told me that once you get

this hypersensitivity, it isn't likely to go away. The nerve/pain

pathways are established -- or something like that [grin].

>

> My gastroenterologist spent 20 minutes with me not long after I was

diagnosed showing me where all my digestive organs are located, and

where I was likely to feel pain. I'd looked at anatomy illustrations,

so had a good idea of what was where, but he had me feel the

locations on my body, which helped considerably. He also made sure I

was clear on when I should just ignore the pain or muscle spasms (due

to this hypersensitivity and my functional upper GI disorders) and

when I needed to make an appointment to see him or get myself to the

ER. I have really appreciated his spending this time with me, since

I get a lot of bad days, digestively-speaking. I don't panic and

worry needlessly, nor take up my doctors' time when all I'm feeling

is how my digestion now works.

>

> Basically my digestion doesn't work the same as it used to, and my

nervous system is faulty as well. I've learned to accept the ups and

downs of my symptoms. I have bad days fairly often, even after 5

years on SCD. But I know the cause, and I stick to the foods that my

body tolerates the best, so that I'm not completely incapacitated by

my bad days. My current bad days are still a huge improvement from

the bad days when I was first diagnosed and started SCD.

>

> Kim M.

> SCD 5 years

> Sphincter of Oddi dysfunction & other upper GI malfunctions 2+

years

> neurological issues 2+ years

>

> >>>>>>>>>>>>.

> Doctors answer is hypersensitive intestines for which we're hoping

> seratonin works -but why are they hypersensitive??? and weren't

ever

> before???? what is going on in there????

>