Re: Any suggestions as to what the problem is???

[Guest guest]

Sally,

What's he eating exactly? Have you checked legality?

What probiotics is he taking?

Is he eating yogurt?

Many viruses can set off IBD issues..

And delaying remicade can increase symptoms..

How long has he been on Remicade? How long have you delayed it?

What antibiotics is he taking?

What supplements is he taking?

Post all of it.

The -only- thing that got me out of this cycle is being %100 legal.

I still deal with powder issues as this could be due to various C Diff

issues as well (the type of powder I experience, plus some other symptoms)

What were the results of last Genova?

Are they thinking of vanco and maybe doing a pulse with Tindamax?

Vanco usually doesn't require that.

Jodi

[Guest guest]

> We'll be calling the pediatrician, the holistic doctor and the IBD

> doctor tomorrow. The delayed Remicade is scheduled for Tuesday and we

> have an office visit with the IBD doctor on Thursday. My guess is the

> IBD doctor will, of course, push the Remicade, which we've been hoping

> to continue to delay. But if it really was helping..... But if this

> is a virus...... Or the bacteria levels high...... See my dilemma?

>

Hey Sally,

Could it possibly be some die-off from the anbtx pulsing?

It sounds like he's a little backed up, what with all the urge

to go and then the not producing much. For me, change in

bowel habits to a bit of constipation always signifies die-off.

And all the symptoms you mentioned (except, I believe

the blood) are on the die-off symptom list at pecanbread, IIRC.

Anyway, since remicade never really produced much effect for

you, IMO, you should try the LDN. Jodi and I both started it

this month, and it seems to be helping both of us (judging

by her comments on that list). And remicade never did

anything for me, except the first time I tried the double dose.

And then, even after I kept on that for a while, nada.

LDN won't work overnight - it's a healing process too, but it

is said to work best with a diet like the SCD.

Mara

[Guest guest]

Sally, I started Remicade 3 weeks ago and I've been believing it a gift from God! Before that, I had the chills and fever and throwing up symptoms that seem like the flu but are symptoms of severe colitis. I was throwing up every hour almost and didn't know which end it would come out of. Water was throw-up-able. I spent a week in misery until I had my first Remicade treatment. I missed my brother's wedding in Costa Rica. Those symptoms were instantly gone after my first treatment and now 3 weeks later (and 2 treatments) I even have energy. I was diagnosed with mal-nutrition and dehydration and stopped SCD to take care of myself for the last 3 weeks but I'm back. My bottom line opinion from what I read about your son is that the Remicade was doing something and now the body is missing it so the Colitis symptoms are back. Please don't let him get back to square one. Square one is a bad place. I made the mistake last year of thinking that these flu like symptoms were the flu and 10 days later I could barely move due to weakness. Hopefully the doctors will start getting it back under control tomorrow. Good luck.

Terri

2 years UC

Back to SCD

Any suggestions as to what the problem is???

Realizing this isn't a medical advice forum, I just wanted to see ifthe symptoms my 17yr old son has been having this week sound familiarto anyone or if you have any thoughts on what might be going on. (Apologies in advance for length of post.)Background: Mark has a diagnosis of colitis, but also has hadrecurrent C-diff infection and other pathogenic bacterial issues (thelatter two identified through Genova lab tests). He had been onRemicade since April 08 through the IBD doctor. Didn't see anytremendous response and the stool continued to be "powder" with 4-5bathroom trips/day until he started the Flagyl/Cipro in July 08through the holistic doctor. At that point, he (finally) startedreporting "chunks", with an occasional "powder" or even "big chunks"and 2-3 trips/day. His last Remicade infusion was 9/24. We had gone to"pulsing" the Flagyl/Cipro. He has been pretty stable and we thoughtit was a good time to delay the Remicade (due late Nov) and try LDN. The holistic doctor also wanted to address his adrenal system, whichseems to be very stressed from a) prior prednisone use and chronicinfection (see above). So in mid-Nov, we added biosynthetic hormones(DHEA and hydrocortisone). We decided to hold a bit on LDN so as notto add too much new at one time. Just before this, we submittedanother Genova test to see how the C-diff and bacteria were doing. The sample at that point was sludgy and a tiny bit of blood one day. Idon't know if that started earlier as Mark was still reporting chunksand I don't visually check. (It's embarrassing enough for a 17yr oldguy to have to log his bathroom trips.) Since then, Mark's been reporting more "powder" but frequency wasstill 2-3 times. So we were thinking the Genova report would show thebacteria was increased, and that maybe the "pulsing" of the Ciprowasn't enough. (It seems the "powder" is related to bacteria levelsand frequency tied to C-diff, based on past tests vs. symptoms.) However, the Genova report is taking forever to come in - it will beavailable tomorrow morning.The real problem is that since last Monday night (12/1), Mark's havingadditional symptoms. That night he had to go to the bathroom duringthe night for the first time in ages. He was feeling hot and cold.When he went to the bathroom before school on Tuesday, he threw upimmediately after going. He went more often (powder)through the dayand didn't feel like eating. He started complaining of a sore throat.Wed/Thurs were the same - extra trips, powder, sore throat, noteating much. Friday was same, with increased frequency and complaintsthat stomach was upset. Saturday, he was going almost hourly for awhile, no appetite. In the evening, he threw up and it wasyellow-green. Sore throat getting better. Today, he said he's noticeda pattern with the bathroom he never had before - he has the urge togo, just a little powder comes out, feels like he still has to go,lays down, almost immediately has to get up and more powder comes out.This repeats every couple hours.If he didn't have the colitis diagnosis, I'd think maybe it was avirus going around. Maybe it is??? He had -Sacy virus in May withsimilar symptoms (sore throat, high frequency), but had severe chillsand more throwing up. I wonder if skipping the Remicade is causingthis? Or is the bacterial issue getting out of hand? Could it be anobstruction? We've never been told he had any sign of obstruction oranything like that and have never been told what would signal such aproblem. We'll be calling the pediatrician, the holistic doctor and the IBDdoctor tomorrow. The delayed Remicade is scheduled for Tuesday and wehave an office visit with the IBD doctor on Thursday. My guess is theIBD doctor will, of course, push the Remicade, which we've been hopingto continue to delay. But if it really was helping..... But if thisis a virus...... Or the bacteria levels high...... See my dilemma?Any help is appreciated.Sally

[Guest guest]

Sally,

I went on LDN to help me get off of steroids as I had to go on it

because I got really ill from eating contaminated meat- I was right in

the midst of this horrible 9 month flare and just when I was feeling a

bit better I ate this meat and it was a complete nightmare. I have

always had a very hard time getting off of steroids partially because

it gives me a jolt of energy and I get so incredibly exhausted getting

off of it- also my bowel becomes dependent to steroids very quickly.

Recently, I have learned that Steroids are awful for C Diff issues as

well as Lyme and Co issues. All of these years taking steroids has

made the Lyme and Co issues that much worse to eradicate.

LDN works really well when doing an anti Candida diet. Since SCD is

naturally anti Candida (and I am on a strict anti-candida form of SCD)

I came to the conclusion that LDN might help me get stronger so I can

get off steroids and approach these Lyme and Co issues. My bowel has

gotten much better with the SCD + LDN combo but sadly, it is bringing

the Lyme and Co issues to the surface and it is really hard to deal

with! It has showed me that these Lyme and Co issues are very real in me.

I am taking a bunch of approaches at looking into these various

issues- but it might explain the level of illness I have been dealing

with for so many years.

LDN is strengthening me and giving me some stamina but I am %100

legal- I cannot deal with being a complete invalid as there is no one

to shop, prep and cook for me.

I just wanted to make that clear as I haven't expressed all of my

medical decisions on this forum and I wouldn't want anyone to jump to

conclusions as to what is helping me.. It is a lot of hard work and

is a multi-faceted approach.

Jodi

SCD 14 months

Crohn's/Colitis

[Guest guest]

I've had similar symptoms (very similar) over the past few weeks after a great deal of success on SCD over the past few months. The only thing I could think to try was cutting back on fructose and honey since I had been drinking a lot of fruit juice as a quick sweet treat. It took about a week but it worked. I'm not sure what bacteria I was overfeeding but I'm almost back to normal now.HarveyCrohns 13 yearsSCD 9 monthsDrug free The real problem is that since last Monday night (12/1), Mark's havingadditional symptoms. That night he had to go to the bathroom duringthe night for the first time in ages. He was feeling hot and cold.When he went to the bathroom before school on Tuesday, he threw upimmediately after going. He went more often (powder)through the dayand didn't feel like eating. He started complaining of a sore throat.Wed/Thurs were the same - extra trips, powder, sore throat, noteating much. Friday was same, with increased frequency and complaintsthat stomach was upset. Saturday, he was going almost hourly for awhile, no appetite. In the evening, he threw up and it wasyellow-green. Sore throat getting better. Today, he said he's noticeda pattern with the bathroom he never had before - he has the urge togo, just a little powder comes out, feels like he still has to go,lays down, almost immediately has to get up and more powder comes out.This repeats every couple hours.

[Guest guest]

Mara,

I hadn't considered die-off. The blood seems to have stopped after

that one day in mid-Nov. Thanks for the suggestion.

sally

>

> Hey Sally,

>

> Could it possibly be some die-off from the anbtx pulsing?

> It sounds like he's a little backed up, what with all the urge

> to go and then the not producing much. For me, change in

> bowel habits to a bit of constipation always signifies die-off.

> And all the symptoms you mentioned (except, I believe

> the blood) are on the die-off symptom list at pecanbread, IIRC.

>

>

[Guest guest]

Harvey,

Interesting. We did add cider and OJ back into his diet during the

past month. Food allergy testing in May had found those as highly

allergic. He'd been doing so well, we thought we'd try them.

Although no immediate reaction, maybe this is connected and it took

awhile for the problem to surface. I will try cutting those out again.

Thanks

Sally

>

> I've had similar symptoms (very similar) over the past few weeks

> after a great deal of success on SCD over the past few months. The

> only thing I could think to try was cutting back on fructose and

> honey since I had been drinking a lot of fruit juice as a quick sweet

> treat.

>

> It took about a week but it worked. I'm not sure what bacteria I was

> overfeeding but I'm almost back to normal now.

>

> Harvey

> Crohns 13 years

> SCD 9 months

> Drug free

>

>

[Guest guest]

Terri,

Glad to hear that you responded so well to Remicade.

I have heard of people having that " miracle " reaction. Mark never

did. Nothing dramatic or even significant enough for us to connect

the dots. It was only after adding the antibiotics that for the first

time we ever saw a result of something we'd tried.

But of course, delaying the last infusion is certainly something we're

wondering about. As you said, hopefully we'll get some answers tomorrow.

Thanks

Sally

>

> Sally, I started Remicade 3 weeks ago and I've been believing it a

gift from God! Before that, I had the chills and fever and throwing up

symptoms that seem like the flu but are symptoms of severe colitis. I

was throwing up every hour almost and didn't know which end it would

come out of. Water was throw-up-able. I spent a week in misery until I

had my first Remicade treatment. I missed my brother's wedding in

Costa Rica. Those symptoms were instantly gone after my first

treatment and now 3 weeks later (and 2 treatments) I even have energy.

I was diagnosed with mal-nutrition and dehydration and stopped SCD to

take care of myself for the last 3 weeks but I'm back. My bottom line

opinion from what I read about your son is that the Remicade was doing

something and now the body is missing it so the Colitis symptoms are

back. Please don't let him get back to square one. Square one is a bad

place. I made the mistake last year of thinking that these flu like

symptoms were the flu and 10 days later I could barely move due to

weakness. Hopefully the doctors will start getting it back under

control tomorrow. Good luck.

> Terri

> 2 years UC

> Back to SCD

>

[Guest guest]

Jodi,

To try to answer your questions...

Probiotics: Metagenics Lactoviden; Florastor; Culturelle

No yogurt as the food allergy doctor said to eliminate all dairy.

Mark started Remicade 4/10/08 and has had 5 infusions. Was due on

11/19, but that's the one we've delayed.

Taking Flagyl on M/W/F, Cipro the other days.

Supplements: Thorne Multi-vitamin, A, zinc, D, Omega 3 fish oil.

Other Rxs: Pentasa, DHEA, Hydrocortisone

Haven't gotten most recent Genova (sample 11/12). The info will be 3

weeks old, so I wonder how helpful it will be. Prior to that (end

Aug) test was positive for C-diff and several pathogenic bacteria

(thus the Flagyl & Cipro).

If positive again for C-diff, yes, definitely going to Vanco. Never

heard of Tindamax ???

I'm embarrassed to say that last Monday, he did have chicken at a

restaurant. Which is the night the main symptoms started. I know the

chicken there would have had some illegals most likely, but he had had

it before earlier in the fall with no problem. I wonder if that is

the root of it.

Thanks

Sally

>

> Sally,

>

> What's he eating exactly? Have you checked legality?

> What probiotics is he taking?

> Is he eating yogurt?

>

> Many viruses can set off IBD issues..

>

> And delaying remicade can increase symptoms..

> How long has he been on Remicade? How long have you delayed it?

>

> What antibiotics is he taking?

> What supplements is he taking?

>

> Post all of it.

>

> The -only- thing that got me out of this cycle is being %100 legal.

> I still deal with powder issues as this could be due to various C Diff

> issues as well (the type of powder I experience, plus some other

symptoms)

>

> What were the results of last Genova?

>

> Are they thinking of vanco and maybe doing a pulse with Tindamax?

> Vanco usually doesn't require that.

>

> Jodi

>

[Guest guest]

It was cider, oranges, orange juice (not from concentrate), and grapes that was causing my reaction. But I was eating and drinking way to much of them.  HarveyHarvey,Interesting. We did add cider and OJ back into his diet during thepast month. Food allergy testing in May had found those as highlyallergic. He'd been doing so well, we thought we'd try them. Although no immediate reaction, maybe this is connected and it tookawhile for the problem to surface. I will try cutting those out again.ThanksSally>> I've had similar symptoms (very similar) over the past few weeks > after a great deal of success on SCD over the past few months. The > only thing I could think to try was cutting back on fructose and > honey since I had been drinking a lot of fruit juice as a quick sweet > treat.> > It took about a week but it worked. I'm not sure what bacteria I was > overfeeding but I'm almost back to normal now.> > Harvey> Crohns 13 years> SCD 9 months> Drug free> > 

[Guest guest]

> It was cider, oranges, orange juice (not from concentrate), and

> grapes that was causing my reaction. But I was eating and drinking

> way to much of them.

Does anyone know why these items cause

reactions? I can't eat drink them either.

What I think happens is that my liver " chokes "

and then no bile gets mixed in the food and that

causes D and if I keep drinking grape juice I end

up with bouts of nausea, D, hot and

cold sweats (often at night)

I asked a doctor once and he said that apples contain

a substance that can irritate the liver in some people.

I wish I knew more (I am the kind of person who finds

it easier to deal with things when I know the why)

Cecilia

[Guest guest]

In my case I concluded that the excess fructose was feeding some bad bugs. It certainly acted like an illegal when I over did it.Harvey> It was cider, oranges, orange juice (not from concentrate), and > grapes that was causing my reaction. But I was eating and drinking > way to much of them.Does anyone know why these items cause reactions? I can't eat drink them either. What I think happens is that my liver "chokes" and then no bile gets mixed in the food and that causes D and if I keep drinking grape juice I end up with bouts of nausea, D, hot and cold sweats (often at night)I asked a doctor once and he said that apples contain a substance that can irritate the liver in some people.I wish I knew more (I am the kind of person who findsit easier to deal with things when I know the why)Cecilia

[Guest guest]

Hi Sally,

Took me a while to answer- got caught up..

> Probiotics: Metagenics Lactoviden; Florastor; Culturelle

> No yogurt as the food allergy doctor said to eliminate all dairy.

>

Sometimes when flares start up probiotics make things worse. Also, as

you probably know these probiotics are illegal. Maybe you should look

at some Custom Probiotics formulations without the Bifidus strains.

> Mark started Remicade 4/10/08 and has had 5 infusions. Was due on

> 11/19, but that's the one we've delayed.

Remicade is tricky like that- was on it for 3.5-4 years and when I

delayed it I would have a rapid decline. Although I was on an -awful-

diet!

> Taking Flagyl on M/W/F, Cipro the other days.

> Supplements: Thorne Multi-vitamin, A, zinc, D, Omega 3 fish oil.

Not sure which supplements these are and if they have a lot of

additives but many times when I feel bad supplements make me feel worse.

> Other Rxs: Pentasa, DHEA, Hydrocortisone

How does he take the Hydrocortisone?

How much DHEA? Which brand? There are legal DHEA's out there.

> Haven't gotten most recent Genova (sample 11/12). The info will be 3

> weeks old, so I wonder how helpful it will be. Prior to that (end

> Aug) test was positive for C-diff and several pathogenic bacteria

> (thus the Flagyl & Cipro).

Was he on antibiotics when doing test? What about Probiotics? Did he

get a purge?

> If positive again for C-diff, yes, definitely going to Vanco. Never

> heard of Tindamax ???

Tindamax is like Flagyl with much less nasty side effects. My GI's

office uses this too. Flagyl caused me horrible oral thrush and

rampant Yeast like issues so many times. I have been on it a lot over

the years..

> I'm embarrassed to say that last Monday, he did have chicken at a

> restaurant. Which is the night the main symptoms started. I know the

> chicken there would have had some illegals most likely, but he had had

> it before earlier in the fall with no problem. I wonder if that is

> the root of it.

Well, if that is the root of it- that's good in the sense that you

have found the culprit. I think this makes sense if the timing works

out.. Sometimes compounded illegals from various sources can cause a

major decline.. It's a total bummer. We live an learn and on we go..

I've screwed up plenty.. None of us are saints.

Jodi

SCD 14 months

Crohn's/Colitis

[Guest guest]

Harvey,

I went through the exact same thing..

But boy isn't undiluted juice delicious!!(never did undiluted just 3/4

juice 1/4 water- but still..)

Cutting out high fructose fruits and significantly diluting juice

helped a lot!

Jodi

SCD 14 months

Crohn's/Colitis

>

> I've had similar symptoms (very similar) over the past few weeks

> after a great deal of success on SCD over the past few months. The

> only thing I could think to try was cutting back on fructose and

> honey since I had been drinking a lot of fruit juice as a quick sweet

> treat.

>

> It took about a week but it worked. I'm not sure what bacteria I was

> overfeeding but I'm almost back to normal now.

[Guest guest]

>

> Hi Sally,

>

> > Mark started Remicade 4/10/08 and has had 5 infusions. Was due on

> > 11/19, but that's the one we've delayed.

>

>

>

> Remicade is tricky like that- was on it for 3.5-4 years and when I

> delayed it I would have a rapid decline. Although I was on an -awful-

> diet!

It's not necessarily tricky like that. The last six months I was on it, I

was on a double dose. It had no effect (except the first time I took

the double dose and not even then for the entire month.) I dropped

it by simply never getting any more (I didn't wean or anything)

and that had no effect as well.

Mara

[Guest guest]

Hi Jodi,

Thanks for all of your answers.

I don't see Bifidus strains in any of these probiotics (?)

The hydrocortisone is 5mg capsules compounded by Women's International

Pharmacy, which specializes in bio-synthetic hormones. He takes 2 in

the AM and 1 with lunch and dinner.

DHEA, again is compounded by Women's. 45mg in the AM.

The Genova test had preliminary results available this morning and the

holistic doctor said the main finding is yeast - a Candida species

(not the common albacan) and a Saccromycies species (not boulardi,

which is what Florastor is). Both tested sensitve to Diflucan, so he

wants Mark to take that for a week and see how he does. This isn't

too surprising given the Flagyl/Cipro use, but hopefully when treated

will clear up some of the lingering problems.

The C-diff was negative. We aren't sure if it's a false negative

though because we didn't have 3 days of no Flagyl before doing the

sample. But the doctor was glad that at least this meant it was

either gone or at least controlled by the Flagyl, and not a resistant

strain that was still showing positive despite treatment. We will

work on reducing the Flagyl from the 3x/week and see how it goes.

Will keep Tindamax in mind if necessary. Thanks for that lead.

The pediatrician checked Mark out today and thinks the most recent

symptoms (sore throat, etc.) are viral. He said things are going

around, and most likely any bug will cause some upset to the

GI/bathroom area in people with IBD.

Will see the IBD doctor on Thursday. Going to delay Remicade until

after that at least because I don't like giving it if there is a viral

infection, yeast supposedly needs a good immune system to fight it

off, plus there have been warnings about taking TNF blockers if you

have an invasive fungal infection (not sure if that's exactly what

we're dealing with, but better safe than sorry.) I just keep thinking

Remicade seems to work better for people who don't seem to have any

identifiable cause for their symptoms, where here we've been dealing

with various specific bacteria and now yeast, which should be

treatable. Maybe I'm living in a fantasy world, but I have to go with

my instinct.

Thanks

Sally