Re: Remicade, SCD - Bowel Obstruction

[Guest guest]

Other Questions: has anyone taken Remicade? Yes, but I have UC. Has it worked for you? No, not at all. Are there any side effects that you have from taking Remicade? None, not even having it work. If used in conjunction with the SCD will I be healed?Everyone is different, so you can't know anything before you try it. Remicade does not have a 100% successrate, however. Given those two questions, would anyone here recommend SCD over Remicade (don't take it at all), or Remicade over the SCD?I would recommend LDN and SCD together over remicade with or without SCD - because it worked better (but everyone is individual so it may or may not work as well for you.) How long does a person need to take Remicade, are we talking years, months, weeks? Once getting off Remicade, what are the chances of Crohn's returning? How bad is it to have these chemicals in your body?Longterm I understand it can be bad. If your choice was down to Remicade or Surgery what would it be? Remicade (assuming that it worked - but I sure would find out before surgery.) Would a possible answer be that I need to combine the SCD with Remicade?I don't think they necessarily function better together (though someone else may know) butSCD will make your state of remission last, if you get into remission from remicade. Does anyone else know of something besides Remicade that I should consider?LDNRegards,Mara

[Guest guest]

At 04:30 PM 9/29/2010, you wrote:

Thank you to everyone here in

the SCD community!!

,

First, if you have strictures, be careful about the amount of fiber you

eat -- very fibrous stuff can cause blockages.

Second, get on SCD 100%.

Third, even SCD is unlikely to reverse scarring, and neither will

Remicade.

Fourth, SCD doesn't have the side effects Remicade has, and it's not

nearly as expensive, although for some people, it may be useful. BUt it

cannot take the place of a healthy diet.

I'll let those who have had this type of surgery speak up.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

Babette the Foundling Beagle

[Guest guest]

I've had crohns for 10 years. My case is moderate to severe but not as bad as

your case. I haven't a surgery yet but at 26, the GIs started making rumblings

about surgery so I went on SCD 100% and haven't looked back.

> has anyone taken Remicade?  Has it worked for you? 

Yes, the doctors me put on Remicade when I was 16--this was when remicade first

came out. Annnnnd it worked. After 3 doses, I went into remission and finally

got off the pred (i was on 30mg up to that point). Then, I was off most

medicines for about 3 years. I flared again and then put me on remicade

again.....which leads me to your next question.....

>Are there any side effects that you have from taking Remicade?

Oh boy are there ever. Here's the thing, remicade is based on mouse antibodies.

Your immune system could could be highly unimpressive with that fact. What

doctors did not know at the time and i learned the hard way is this: if you are

on remicade once, stop taking it for a while, and then take it again, your body

develops antibodies against the remicade.

10 minutes after the remicade infusion started, I began to feel nauseous and

feverish. within 15 minutes, i started throwing up and convulsing. It was pretty

scary. They got some IV benadryl in me. I calmed down. And within a couple

months i was back on the remicade again.

This time I went into remission for four years. At my last two flare ups, the

doctor put me on humira instead of remicade because of my previous adverse

reaction and because humira is based on human antibodies its 1)safer 2)a lot

cheaper, humira is like 1500 dollars a dose while remicade is like 6 grand 3)

and can be administered at home.

> Given those two questions, would anyone here recommend SCD over Remicade

(don't

> take it at all), or Remicade over the SCD? 

No matter what you, I cannot stress strongly enough that you should do SCD. The

drugs are a maintenance therapy. They don't cure anything. You (and I) are in a

constant arms race with our immune systems. No matter what drug you are on

(aside from steroids which don't count), your body will almost surely adapt and

start attacking your gut again. I knew about scd since I was 19 but i didn't

want to do it because it seemed like such a hassle and I liked my fatty, greasy

SAD foods. And i figured hey drugs are working for me so why bother. Well, at

26, the doctors started talking surgery because i am getting at the point where

drugs aren't going to help me anymore.

God help me if the steroids stopped working to tamp down on my flare.

How long does a person need to take

> Remicade, are we talking years, months, weeks?

Originally, when I was put on remicade 10 years ago, they thought it was a one

shot deal. You get three transfusions every 2 months and then thats it for life.

3 years later the thinking has changed dramatically. Now remicade is seen as a

maintenance therapy that you could take indefinitely. Not that I'd recommend

that since pumping your body full immunosuppresants over a long period of time

is a bad idea.

>  Once getting off Remicade, what

> are the chances of Crohn's returning?

Crohns never goes away. It just goes into remission. It always comes back...if

drugs and surgery are your only treatment. If you want to have any chance of

stopping another flare, SCD is your best option. There are, of course, no

gaurantees. I have seen people on this list describe how they faithfully

followed the diet and still had flares but on the other hand i've seen many many

people talk about how they are completely healthy because of the diet. 

>How bad is it to have these chemicals in

> your body?

That's the questoin that haunts me. The short answer is we don't know. These

drugs haven't been around very long so there's no way to tell what there long

term side effects will be. Nothing good I imagine. I

>If your choice was down to Remicade or Surgery what would it be? 

Personal opinion, but i would do anything to avoid surgery. My goal in life is

to not have a colostomy bag. The moment i start surgery, i risk going down that

path. But again that's just my personal opinion. It all depends on your values.

> Would a possible answer be that I need to combine the SCD with Remicade?

Certainly, that could be a potent combination. Sometimes SCD is not enough and

pharmaceuticals can help things along. Not sure about remicade though....wonder

if there's anyone on the list who is doing both.

> Does anyone else know of something besides Remicade that I should consider? 

Yes, i'd seriously consider humira (I am on that) or cymzia (new drug). Have you

talked to your doctor about humira or cymzia? What about low dose naltrexone (i

am currently on that and i think its helping)? Also, for the steroids, i wonder

if you could switch from the prednisone (which is evil evil evil) to entocort

(less evil). Compared to pred, entocort is not as bad because its not as

systemic. One of my GI doctors said that with this particular steroid, it could

be a valid long term solution, unlike prednisone which will eventually destroy

your body.

>

[Guest guest]

http://www.cobbler.plus.com/btvc/knowledge_base/kb/obstructions_and_resections.h\

tm

Suneeti (Crohns, SCD 2000)

[Guest guest]

Mara, or anyone who has UC can you tell me when you first started scd, was it

months before you got better, yes everyone is so very differnt I know. When, I

think UC people are slower to heal?

>

> >

> >

> > Other Questions: has anyone taken Remicade?

>

>

> Yes, but I have UC.

>

> > Has it worked for you?

>

> No, not at all.

>

> > Are there any side effects that you have from taking Remicade?

>

>

> None, not even having it work.

>

> > If used in conjunction with the SCD will I be healed?

>

> Everyone is different, so you can't know anything before you try it. Remicade

does not have a 100% success

> rate, however.

>

> > Given those two questions, would anyone here recommend SCD over Remicade

(don't take it at all), or Remicade over the SCD?

>

>

> I would recommend LDN and SCD together over remicade with or without SCD -

because it worked better (but everyone is individual so it may or may not work

as well for you.)

>

> > How long does a person need to take Remicade, are we talking years,

months, weeks? Once getting off Remicade, what are the chances of Crohn's

returning? How bad is it to have these chemicals in your body?

>

> Longterm I understand it can be bad.

>

> > If your choice was down to Remicade or Surgery what would it be?

>

> Remicade (assuming that it worked - but I sure would find out before surgery.)

>

> > Would a possible answer be that I need to combine the SCD with Remicade?

>

> I don't think they necessarily function better together (though someone else

may know) but

> SCD will make your state of remission last, if you get into remission from

remicade.

>

> > Does anyone else know of something besides Remicade that I should consider?

>

> LDN

>

> Regards,

>

> Mara

>

[Guest guest]

Hi ,

You've already received some good replies, but I thought I'd give you my

experiences with Remicade.

I was diagnosed the end of July of 09, and after a long bout of hospital stays

and not having success with Prednisone, I was put on Remicade in combination

with Methotrexate. It worked great in the beginning, I saw results in a couple

days and then remission for probably 3 months.

I started SCD but then I cheated at Christmas and my symptoms got a lot worse.

Remicade is initially given every 8 weeks (this is not counting the initial

loading dose), but Remicade was not being effective for the whole 8 weeks so I

started getting it every 6 weeks. My symptoms got so bad that I ended up in the

hospital in March and they started me at a double dose of Remicade for every 6

weeks. It's not uncommon for people to have to first shorten the amount of time

between infusions and/or eventually double the dosage to be effective.

The double dose helped a bit, but a few days out of the hospital I started

getting high fevers again and was put on Prednisone. I stayed with the Remicade

after getting off pred, it helped somewhat, but my symptoms were still apparent

and started to get really bad again last month. (I have been following SCD

fanatically since the last hospital stay in March). I've now switched to Humira.

So, to answer some of your questions, Remicade can work, but you won't know how

long it will stay effective for you. GI's tell you you're supposed to take it

indefinitely, because like was mentioned before, if you get off it, and

sometimes even if you're on it, you can develop antibodies to it.

I had no known side effects, but I'm always afraid of how it may effect me, or

how Humira may effect me later on.

I would personally choose to take Remicade vs. surgery, but then my feelings are

to try anything before resorting to surgery. Also it was suggested that you try

Humira. I'm not sure what is currently working for me right now, but I will say

Humira is definitely more convenient. I had to take half days at work to get my

infusions done, and afterwards I was always so tired from the Tylenol PM they

make you take (to prevent reactions) that I was worthless the rest of the day.

My opinion is that it would be very wise to do SCD fanatically no matter if you

choose to do Remicade or have surgery. Being that I've only had Crohn's for a

little over a year and one of the top tier drugs has already failed me, I'm not

that optimistic about the lasting effects of the meds. Many people have to take

meds in conjunction with the diet, at least in the beginning. Everyone reacts

differently to meds, and people respond differently to the diet, but I want to

know that I'm doing all that I can to help control my disease and stay out of

the hospital, so I choose to stick with the diet. Will I ever be able to get off

meds, I don't know, but I'm willing to stick with it and see what it does for

me.

I hope that helps. Good luck with your appointment.

Take care,

Amber

has anyone taken Remicade?  Has it worked for you?  Are there

> any side effects that you have from taking Remicade? If used in conjunction

with

> the SCD will I be healed?

> Given those two questions, would anyone here recommend SCD over Remicade

(don't

> take it at all), or Remicade over the SCD?  How long does a person need to

take

> Remicade, are we talking years, months, weeks?  Once getting off Remicade,

what

> are the chances of Crohn's returning?  How bad is it to have these chemicals

in

> your body? If your choice was down to Remicade or Surgery what would it be? 

> Would a possible answer be that I need to combine the SCD with Remicade?

> Does anyone else know of something besides Remicade that I should consider?  I

> took Immuran with no success a few years ago.

> I meet with  doctor on Friday this week, so I am trying to get as much

> information as possible to make a good decision.

>

>   Thank you to everyone here in the SCD community!!

>

> WA State

> Crohn's 17 years

> Current: Prednisone 60 mg and SCD following about 80% as efficient as

possible.

>

[Guest guest]

Hi ,

I am really happy you are asking questions!

This is a wonderful and supportive community with a whole varied group of people

with different ailments.

I have a history of many bowel obstructions that led me to surgery.

I had about 2 feet removed- I have Crohn's. Many hospitalizations and ER

visits.. many meds etc.

The stricturing is a pain to deal with and it is really hard to know if scar

tissue is from healing or from surgery.. It is difficult to know just like that

without testing (ughh)

I did Remicade for about 4+ years. I would say in general it kept me from being

in the danger zone but never put me into remission but I was not on SCD at the

time. I started needing infusions quite frequently, and then I developed a

terrible allergy during an infusion and it stopped working. I am kind of happy

about that if I can say that at all as it eventually led me to the SCD. I have

a history of not responding to CD meds.

Personally, I would keep surgery as a last resort but dealing with side effects

and knowing about scar tissue today- I would opt for surgery over Remicade and I

would be %110 fanatical on the SCD.

It has given me my life back. But that is just me, in my own personal set of

circumstances and I shudder to think of the long term side effects that come

with it.

If your issue is scar tissue that's different than inflammation or fistulas..

Personally, my rectal issues on Remicade would get so much better and by week 5

I would start to plummet like this on-going vicious cycle that got me totally

depressed. This does not happen anymore on the diet. It was as if my body got

addicted to it- I know that is not a good classification but I ended up like

needing to be glued to my infusion schedule or else I'd wilt and end up in

trouble.

SCD calls for fanatical adherence (I know it is a pain, but it is so well worth

it!!!!!!!!!!!!!!!!!!!!!)

You should look into LowDoseNaltrexone. There is an LDN group for IBD.

I would totally do SCD plus LDN and see where you are at.

Maybe get some stool testing to see you aren't dealing with crazy critters.. and

reasess at some point.

Along with checking your Thyroid and Adrenals.

Just my two cents and I'm not a doctor.

Jodi

[Guest guest]

> Other Questions: has anyone taken Remicade? 

Yes. I used Remicade from May of 2007 until December of 2009.

Has it worked for you? 

Yes, it was a miracle drug for me, it saved my life. After my second infusion,

I was having normal bowel movements. I was in the worst flare of my life that

nothing would get under control. Lost 37 pounds in 4 months, going to the

bathroom more than 25 times a day, horrible pain all the time and pain so bad

when I would go to the bathroom that it would make me vomit (I kept a cooler

with ice in it in the bathroom so that I could put the ice on my stomach as I

eliminated) or pass out. B and M was all that came out of me. I refused

Remicade until the last possible hour and then gave in. I was very thankful for

it and still am thankful for the time it gave me.

Are there

> any side effects that you have from taking Remicade?

Yes. I got sick very easily (colds). I also had 4 skin staph infections that

were very difficult to treat and have scars from. My drs are also under the

impression it was Remicade that killed my kidney function. I was at 92 but it

dropped to 30 and now I am fighting for my kidneys as well. You have blood work

done every time you have an infusion so the drs can monitor your health. My dr

missed my drop from 92 to 57 and overlooked the continued drop for 8 months

before a different doctor caught it. Hopefully your dr will pay better

attention to your lab work. I have learned to request copies of everything

every time I have blood work done and i examine it myself. I taught myself what

all those numbers mean so I can be in charge.

If used in conjunction with

> the SCD will I be healed?

We cannot answer this. Everyone responds differently. SCD heals, Remicade

shuts things down so that you can heal. No matter what you decide, a change in

diet and lifestyle should be top priority. You have to make that decision for

yourself and your future, even if the changes are hard or seem impossible. They

aren't. You just have to decide what you want in life. Health or sickness.

SCd can guide most on the path to wellness if you give it a solid chance.

> Given those two questions, would anyone here recommend SCD over Remicade

(don't

> take it at all), or Remicade over the SCD? 

Remicade is a bandaid, just like all the other immunosupressant drugs out there.

Even on Remicade, if you are a positive responder, that doesn't mean you will

always be. You can still flare. When I asked my dr what they would do if I

flared on Remicade, they said " give you Prednisone "

How long does a person need to take

> Remicade, are we talking years, months, weeks? 

Remicade is now a " maintenance " therapy/drug. You would likely be on it for as

long as you tolerate it. It is not meant to get on, and get off, and get back

on during a flare anymore. If you do stop taking it and then try again later,

you could have a terrible reaction to it because your body might build up

antibodies against it. This can happen in as little as 12 weeks.

Once getting off Remicade, what

> are the chances of Crohn's returning? 

Nobody can know this, but my experience is YES, the UC/C returned, though not as

bad (I am on LDN and though was recently " flaring " that meant one bathroom trip

everyday with pain, B and M as opposed to every hour or more, so I think the LDN

helped keep me stable until I gave my intestines a rest with the intro for a

while (as a side note, with a very extended intro diet among other things, after

3 weeks, the bleeding has stopped and the last 2 days I have had normal BMs.

Praise GOD!!)

How bad is it to have these chemicals in

> your body?

My personal belief is that we were created with an immune system for a reason.

Though shutting it down might seem like a good idea for some, I don't feel that

way. When you shut down the immune system, you open your body up to a whole

host of other issues. Cancer, infections, etc. Not good.

If your choice was down to Remicade or Surgery what would it be? 

I chose Remicade before. But, this is a hard question and not one that you can

approach lightly. Of course I don't want a baggie hanging off of me for the

rest of my life, but because I have already done Remicade and it might have

damaged a vital organ (the kidneys ARE damaged, we just can't be CERTAIN it was

the Remicade), I am not willing to do another immunosupressant until I have

exhausted all of my options. I am on a quest to find ways to strengthen my

immune system, but that is just me personally. If nothing else works, I would

rather have my colon removed than take another drug that will shut down my

immune system. But that is MY story, yours might be completely different. I

should add that I do not tolerate any ASA drugs, azulfidine, methotrexate, my

enzyme activity is too low to use Immuran/6MP safely and can't use others

because of my kidneys so my choices are quite limited. I am looking into

anti-oxidant therapy and helminthic therapy if my problems continue.

> Would a possible answer be that I need to combine the SCD with Remicade?

I did both for most of the time I was on Remicade and I felt great until my

kidneys began to fail. But even with SCd and Remicade, sometimes I would over

eat something legal and have GI troubles. YOu really have to work out what is

best for your body and have a very personal plan.

> Does anyone else know of something besides Remicade that I should consider? 

SCD and LDN together are a helpful combo. I also have supplements that I use

(high doses of Omegas, Vit C, Vit D, selenium and I am looking into a way to

increase how much Glutathione my body makes to help keep inflammation in check).

indeterminent UC/C

LDN and SCD with additional supplements

[Guest guest]

For me personally... I have UC... I am only 3 months into SCD and very satisfied with the results.. But I got on the diet only 10 months after I was diagnoised.. I had only light blood at the start... and 6 months later a real flare... I did not have the long term ill health that most in this group have.. I am not on steroids.. but I am slowly tappering off of the meds.. I just don't panic if I miss a dose here or there.. And by January I want to be off all meds and attempt to maintain with just SCD.. I am praying for the text book heal that at 2 years I can begin to introduce other foods back into my diet.. Even if I never go back completely to how I was eating before SCD.. I can only pray that it all works out..

41

UC sept 09

SCD July 12 2010

To: BTVC-SCD Sent: Thu, September 30, 2010 7:15:43 AMSubject: Re: Remicade, SCD - Bowel Obstruction

Mara, or anyone who has UC can you tell me when you first started scd, was it months before you got better, yes everyone is so very differnt I know. When, I think UC people are slower to heal? > > > > > > > Other Questions: has anyone taken Remicade? > > > Yes, but I have UC. > > > Has it worked for you? > > No, not at all. > > > Are there any side effects that you have from taking Remicade?> > > None, not even having it work. > > > If used in conjunction with the SCD will I be healed?> > Everyone is different, so you can't

know anything before you try it. Remicade does not have a 100% success> rate, however. > > > Given those two questions, would anyone here recommend SCD over Remicade (don't take it at all), or Remicade over the SCD?> > > I would recommend LDN and SCD together over remicade with or without SCD - because it worked better (but everyone is individual so it may or may not work as well for you.) > > > How long does a person need to take Remicade, are we talking years, months, weeks? Once getting off Remicade, what are the chances of Crohn's returning? How bad is it to have these chemicals in your body?> > Longterm I understand it can be bad. > > > If your choice was down to Remicade or Surgery what would it be? > > Remicade (assuming that it worked - but I sure would find out before surgery.) > > > Would a possible answer be that I need

to combine the SCD with Remicade?> > I don't think they necessarily function better together (though someone else may know) but> SCD will make your state of remission last, if you get into remission from remicade. > > > Does anyone else know of something besides Remicade that I should consider?> > LDN> > Regards,> > Mara>

[Guest guest]

,

How has the Remicade worked for you? My son has UC and when the various levels of drugs did nothing for him, and the GI started talking Remicade we started looking for alternatives. He has been on SCD for 4 months and no drugs. However, he is anemic and is having malabsorption problems as he can’t gain weight and is struggling to hang onto what he has. He tried LDN but after two weeks of that and feeling worse he stopped. I think he has a yeast issue which is interfering with LDN effectiveness but I now I can’t find a Dr. to prescribe a test to confirm this. We are going to see a naturopathic physician who battled UC himself and now is symptom free. If this does not help, I am afraid my son might have to try the Remicade. He is only 19 and I have read too many reports regarding the side affects, especially pertaining to teenagers taking it.

Would appreciate your perspective.

Eileen

Mother of 19 yo son with UC for 5 years

SCD 4 months; no meds

For me personally... I have UC... I am only 3 months into SCD and very satisfied with the results.. But I got on the diet only 10 months after I was diagnoised.. I had only light blood at the start... and 6 months later a real flare... I did not have the long term ill health that most in this group have.. I am not on steroids.. but I am slowly tappering off of the meds.. I just don't panic if I miss a dose here or there.. And by January I want to be off all meds and attempt to maintain with just SCD.. I am praying for the text book heal that at 2 years I can begin to introduce other foods back into my diet.. Even if I never go back completely to how I was eating before SCD.. I can only pray that it all works out..

41

UC sept 09

SCD July 12 2010

To: BTVC-SCD

Sent: Thu, September 30, 2010 7:15:43 AM

Subject: Re: Remicade, SCD - Bowel Obstruction

Mara, or anyone who has UC can you tell me when you first started scd, was it months before you got better, yes everyone is so very differnt I know. When, I think UC people are slower to heal?

>

> >

> >

> > Other Questions: has anyone taken Remicade?

>

>

> Yes, but I have UC.

>

> > Has it worked for you?

>

> No, not at all.

>

> > Are there any side effects that you have from taking Remicade?

>

>

> None, not even having it work.

>

> > If used in conjunction with the SCD will I be healed?

>

> Everyone is different, so you can't know anything before you try it. Remicade does not have a 100% success

> rate, however.

>

> > Given those two questions, would anyone here recommend SCD over Remicade (don't take it at all), or Remicade over the SCD?

>

>

> I would recommend LDN and SCD together over remicade with or without SCD - because it worked better (but everyone is individual so it may or may not work as well for you.)

>

> > How long does a person need to take Remicade, are we talking years, months, weeks? Once getting off Remicade, what are the chances of Crohn's returning? How bad is it to have these chemicals in your body?

>

> Longterm I understand it can be bad.

>

> > If your choice was down to Remicade or Surgery what would it be?

>

> Remicade (assuming that it worked - but I sure would find out before surgery.)

>

> > Would a possible answer be that I need to combine the SCD with Remicade?

>

> I don't think they necessarily function better together (though someone else may know) but

> SCD will make your state of remission last, if you get into remission from remicade.

>

> > Does anyone else know of something besides Remicade that I should consider?

>

> LDN

>

> Regards,

>

> Mara

>

[Guest guest]

So sorry for the confussion.. I never took Remicade... I only replied to the part that the diet has worked well for me... I have taken pred. in the past and I am now on a off brand of Imuran along with Asacol.. This is what I am trying to be off of by January. Again I am sorry for the confussion. I am also loosing weight.. I am just trying to eat more.. I lost 11 pounds (wich is alot on me) and I am just trying to eat more and also more often to gain the weight back

Good luck

To: BTVC-SCD Sent: Fri, October 1, 2010 3:25:04 AMSubject: Re: Re: Remicade, SCD - Bowel Obstruction

,How has the Remicade worked for you? My son has UC and when the various levels of drugs did nothing for him, and the GI started talking Remicade we started looking for alternatives. He has been on SCD for 4 months and no drugs. However, he is anemic and is having malabsorption problems as he can’t gain weight and is struggling to hang onto what he has. He tried LDN but after two weeks of that and feeling worse he stopped. I think he has a yeast issue which is interfering with LDN effectiveness but I now I can’t find a Dr. to prescribe a test to confirm this. We are going to see a naturopathic physician who battled UC himself and now is symptom free. If this does not help, I am afraid my son might have to try the Remicade. He is only 19 and I have read too many reports regarding the side affects, especially pertaining to teenagers taking it. Would

appreciate your perspective.Eileen Mother of 19 yo son with UC for 5 yearsSCD 4 months; no meds

For me personally... I have UC... I am only 3 months into SCD and very satisfied with the results.. But I got on the diet only 10 months after I was diagnoised.. I had only light blood at the start... and 6 months later a real flare... I did not have the long term ill health that most in this group have.. I am not on steroids.. but I am slowly tappering off of the meds.. I just don't panic if I miss a dose here or there.. And by January I want to be off all meds and attempt to maintain with just SCD.. I am praying for the text book heal that at 2 years I can begin to introduce other foods back into my diet.. Even if I never go back completely to how I was eating before SCD.. I can only pray that it all works out.. 41UC

sept 09SCD July 12 2010

To: BTVC-SCD Sent: Thu, September 30, 2010 7:15:43 AMSubject: Re: Remicade, SCD - Bowel Obstruction Mara, or anyone who has UC can you tell me when you first started scd, was it months before you got better, yes everyone is so very differnt I know. When, I think UC people are slower to heal? > > > > > > > Other

Questions: has anyone taken Remicade? > > > Yes, but I have UC. > > > Has it worked for you? > > No, not at all. > > > Are there any side effects that you have from taking Remicade?> > > None, not even having it work. > > > If used in conjunction with the SCD will I be healed?> > Everyone is different, so you can't know anything before you try it. Remicade does not have a 100% success> rate, however. > > > Given those two questions, would anyone here recommend SCD over Remicade (don't take it at all), or Remicade over the SCD?> > > I would recommend LDN and SCD together over remicade with or without SCD - because it worked better (but everyone is individual so it may or may not work as well for you.) > > > How long does a person need to take Remicade, are we talking years,

months, weeks? Once getting off Remicade, what are the chances of Crohn's returning? How bad is it to have these chemicals in your body?> > Longterm I understand it can be bad. > > > If your choice was down to Remicade or Surgery what would it be? > > Remicade (assuming that it worked - but I sure would find out before surgery.) > > > Would a possible answer be that I need to combine the SCD with Remicade?> > I don't think they necessarily function better together (though someone else may know) but> SCD will make your state of remission last, if you get into remission from remicade. > > > Does anyone else know of something besides Remicade that I should consider?> > LDN> > Regards,> > Mara>

[Guest guest]

Re: Remicade, SCD - Bowel Obstruction

>> Other Questions: has anyone taken Remicade?

>

> Yes. I used Remicade from May of 2007 until December of 2009.

>

> Has it worked for you?

>

> Yes, it was a miracle drug for me, it saved my life. After my second

> infusion, I was having normal bowel movements. I was in the worst flare

> of my life that nothing would get under control. Lost 37 pounds in 4

> months, going to the bathroom more than 25 times a day, horrible pain all

> the time and pain so bad when I would go to the bathroom that it would

> make me vomit (I kept a cooler with ice in it in the bathroom so that I

> could put the ice on my stomach as I eliminated) or pass out. B and M was

> all that came out of me. I refused Remicade until the last possible hour

> and then gave in. I was very thankful for it and still am thankful for

> the time it gave me.

>

> Are there

>> any side effects that you have from taking Remicade?

>

> Yes. I got sick very easily (colds). I also had 4 skin staph infections

> that were very difficult to treat and have scars from. My drs are also

> under the impression it was Remicade that killed my kidney function. I

> was at 92 but it dropped to 30 and now I am fighting for my kidneys as

> well. You have blood work done every time you have an infusion so the drs

> can monitor your health. My dr missed my drop from 92 to 57 and

> overlooked the continued drop for 8 months before a different doctor

> caught it. Hopefully your dr will pay better attention to your lab work.

> I have learned to request copies of everything every time I have blood

> work done and i examine it myself. I taught myself what all those numbers

> mean so I can be in charge.

>

> If used in conjunction with

>> the SCD will I be healed?

>

> We cannot answer this. Everyone responds differently. SCD heals,

> Remicade shuts things down so that you can heal. No matter what you

> decide, a change in diet and lifestyle should be top priority. You have

> to make that decision for yourself and your future, even if the changes

> are hard or seem impossible. They aren't. You just have to decide what

> you want in life. Health or sickness. SCd can guide most on the path to

> wellness if you give it a solid chance.

>

>> Given those two questions, would anyone here recommend SCD over Remicade

>> (don't

>> take it at all), or Remicade over the SCD?

>

> Remicade is a bandaid, just like all the other immunosupressant drugs out

> there. Even on Remicade, if you are a positive responder, that doesn't

> mean you will always be. You can still flare. When I asked my dr what

> they would do if I flared on Remicade, they said " give you Prednisone "

>

>

> How long does a person need to take

>> Remicade, are we talking years, months, weeks?

>

> Remicade is now a " maintenance " therapy/drug. You would likely be on it

> for as long as you tolerate it. It is not meant to get on, and get off,

> and get back on during a flare anymore. If you do stop taking it and then

> try again later, you could have a terrible reaction to it because your

> body might build up antibodies against it. This can happen in as little

> as 12 weeks.

>

>

> Once getting off Remicade, what

>> are the chances of Crohn's returning?

>

> Nobody can know this, but my experience is YES, the UC/C returned, though

> not as bad (I am on LDN and though was recently " flaring " that meant one

> bathroom trip everyday with pain, B and M as opposed to every hour or

> more, so I think the LDN helped keep me stable until I gave my intestines

> a rest with the intro for a while (as a side note, with a very extended

> intro diet among other things, after 3 weeks, the bleeding has stopped and

> the last 2 days I have had normal BMs. Praise GOD!!)

>

> How bad is it to have these chemicals in

>> your body?

>

> My personal belief is that we were created with an immune system for a

> reason. Though shutting it down might seem like a good idea for some, I

> don't feel that way. When you shut down the immune system, you open your

> body up to a whole host of other issues. Cancer, infections, etc. Not

> good.

>

>

> If your choice was down to Remicade or Surgery what would it be?

>

> I chose Remicade before. But, this is a hard question and not one that you

> can approach lightly. Of course I don't want a baggie hanging off of me

> for the rest of my life, but because I have already done Remicade and it

> might have damaged a vital organ (the kidneys ARE damaged, we just can't

> be CERTAIN it was the Remicade), I am not willing to do another

> immunosupressant until I have exhausted all of my options. I am on a

> quest to find ways to strengthen my immune system, but that is just me

> personally. If nothing else works, I would rather have my colon removed

> than take another drug that will shut down my immune system. But that is

> MY story, yours might be completely different. I should add that I do not

> tolerate any ASA drugs, azulfidine, methotrexate, my enzyme activity is

> too low to use Immuran/6MP safely and can't use others because of my

> kidneys so my choices are quite limited. I am looking into anti-oxidant

> therapy and helminthic therapy if my problems continue.

>

>> Would a possible answer be that I need to combine the SCD with Remicade?

>

> I did both for most of the time I was on Remicade and I felt great until

> my kidneys began to fail. But even with SCd and Remicade, sometimes I

> would over eat something legal and have GI troubles. YOu really have to

> work out what is best for your body and have a very personal plan.

>

>> Does anyone else know of something besides Remicade that I should

>> consider?

>

> SCD and LDN together are a helpful combo. I also have supplements that I

> use (high doses of Omegas, Vit C, Vit D, selenium and I am looking into a

> way to increase how much Glutathione my body makes to help keep

> inflammation in check).

>

>

> indeterminent UC/C

> LDN and SCD with additional supplements

>

>

>

>

>

>

>

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

>

>

[Guest guest]

I had Remicade last Febuary and it only gave me 5 days relief. Everyone reacts differently. Remicade did not work for me. It sent me back to the hospital because of a simple UTI turned into a feverish nightmare. My GI said that because Remicade suppresses everthing I did not have the strength to fight of a simple infection and antibiotics had to be infused through IV, I was in the hospital for 2 weeks. The bad effects outweighs the good it did for me.

Nat

UC Dec 2009

SCD Jun 2010

Prednisone 20mg

Pentasa 3000mg

To: BTVC-SCD Sent: Mon, October 11, 2010 10:40:19 PMSubject: Re: Re: Remicade, SCD - Bowel Obstruction

Re: Remicade, SCD - Bowel Obstruction>> Other Questions: has anyone taken Remicade?>> Yes. I used Remicade from May of 2007 until December of 2009.>> Has it worked for you?>> Yes, it was a miracle drug for me, it saved my life. After my second > infusion, I was having normal bowel movements. I was in the worst flare > of my life that nothing would get under control. Lost 37 pounds in 4 > months, going to the bathroom more than 25 times a day, horrible pain all

> the time and pain so bad when I would go to the bathroom that it would > make me vomit (I kept a cooler with ice in it in the bathroom so that I > could put the ice on my stomach as I eliminated) or pass out. B and M was > all that came out of me. I refused Remicade until the last possible hour > and then gave in. I was very thankful for it and still am thankful for > the time it gave me.>> Are there>> any side effects that you have from taking Remicade?>> Yes. I got sick very easily (colds). I also had 4 skin staph infections > that were very difficult to treat and have scars from. My drs are also > under the impression it was Remicade that killed my kidney function. I > was at 92 but it dropped to 30 and now I am fighting for my kidneys as > well. You have blood work done every time you have an infusion so the drs > can monitor your

health. My dr missed my drop from 92 to 57 and > overlooked the continued drop for 8 months before a different doctor > caught it. Hopefully your dr will pay better attention to your lab work. > I have learned to request copies of everything every time I have blood > work done and i examine it myself. I taught myself what all those numbers > mean so I can be in charge.>> If used in conjunction with>> the SCD will I be healed?>> We cannot answer this. Everyone responds differently. SCD heals, > Remicade shuts things down so that you can heal. No matter what you > decide, a change in diet and lifestyle should be top priority. You have > to make that decision for yourself and your future, even if the changes > are hard or seem impossible. They aren't. You just have to decide what > you want in life. Health or sickness. SCd can guide most on the path

to > wellness if you give it a solid chance.>>> Given those two questions, would anyone here recommend SCD over Remicade >> (don't>> take it at all), or Remicade over the SCD?>> Remicade is a bandaid, just like all the other immunosupressant drugs out > there. Even on Remicade, if you are a positive responder, that doesn't > mean you will always be. You can still flare. When I asked my dr what > they would do if I flared on Remicade, they said "give you Prednisone">>> How long does a person need to take>> Remicade, are we talking years, months, weeks?>> Remicade is now a "maintenance" therapy/drug. You would likely be on it > for as long as you tolerate it. It is not meant to get on, and get off, > and get back on during a flare anymore. If you do stop taking it and then > try again later, you could have a

terrible reaction to it because your > body might build up antibodies against it. This can happen in as little > as 12 weeks.>>> Once getting off Remicade, what>> are the chances of Crohn's returning?>> Nobody can know this, but my experience is YES, the UC/C returned, though > not as bad (I am on LDN and though was recently "flaring" that meant one > bathroom trip everyday with pain, B and M as opposed to every hour or > more, so I think the LDN helped keep me stable until I gave my intestines > a rest with the intro for a while (as a side note, with a very extended > intro diet among other things, after 3 weeks, the bleeding has stopped and > the last 2 days I have had normal BMs. Praise GOD!!)>> How bad is it to have these chemicals in>> your body?>> My personal belief is that we were created with an immune system

for a > reason. Though shutting it down might seem like a good idea for some, I > don't feel that way. When you shut down the immune system, you open your > body up to a whole host of other issues. Cancer, infections, etc. Not > good.>>> If your choice was down to Remicade or Surgery what would it be?>> I chose Remicade before. But, this is a hard question and not one that you > can approach lightly. Of course I don't want a baggie hanging off of me > for the rest of my life, but because I have already done Remicade and it > might have damaged a vital organ (the kidneys ARE damaged, we just can't > be CERTAIN it was the Remicade), I am not willing to do another > immunosupressant until I have exhausted all of my options. I am on a > quest to find ways to strengthen my immune system, but that is just me > personally. If nothing else works, I

would rather have my colon removed > than take another drug that will shut down my immune system. But that is > MY story, yours might be completely different. I should add that I do not > tolerate any ASA drugs, azulfidine, methotrexate, my enzyme activity is > too low to use Immuran/6MP safely and can't use others because of my > kidneys so my choices are quite limited. I am looking into anti-oxidant > therapy and helminthic therapy if my problems continue.>>> Would a possible answer be that I need to combine the SCD with Remicade?>> I did both for most of the time I was on Remicade and I felt great until > my kidneys began to fail. But even with SCd and Remicade, sometimes I > would over eat something legal and have GI troubles. YOu really have to > work out what is best for your body and have a very personal plan.>>> Does anyone else know of

something besides Remicade that I should >> consider?>> SCD and LDN together are a helpful combo. I also have supplements that I > use (high doses of Omegas, Vit C, Vit D, selenium and I am looking into a > way to increase how much Glutathione my body makes to help keep > inflammation in check).>> > indeterminent UC/C> LDN and SCD with additional supplements>>>>>>>> ------------------------------------>>

[Guest guest]

I was on Remicade and in remission from Crohn's for 7 years. Only when the

Remicade started failing--apparently it's common for people to develop

antibodies to it--did I find out about SCD. I am still on Remicade since it's

still doing something for me. I hope to just do SCD eventually, but only when

I've felt good for at least a year.

Joe

SCD Feb 2010

>

> I had Remicade last Febuary and it only gave me 5 days relief.  Everyone

reacts

> differently. Remicade did not work for me.  It sent me back to the hospital

> because of a simple UTI turned into a feverish nightmare.  My GI said that

> because Remicade suppresses everthing I did not have the strength to fight of

a

> simple infection and antibiotics had to be infused through IV, I was in the

> hospital for 2 weeks.  The bad effects outweighs the good it did for me.

>

> Nat

> UC Dec 2009

> SCD Jun 2010

> Prednisone 20mg

> Pentasa 3000mg

>

>

>

> ________________________________

>

> To: BTVC-SCD

> Sent: Mon, October 11, 2010 10:40:19 PM

> Subject: Re: Re: Remicade, SCD - Bowel Obstruction

>

>  

>

> Re: Remicade, SCD - Bowel Obstruction

>

> >> Other Questions: has anyone taken Remicade?

> >

> > Yes. I used Remicade from May of 2007 until December of 2009.

> >

> > Has it worked for you?

> >

> > Yes, it was a miracle drug for me, it saved my life. After my second

> > infusion, I was having normal bowel movements. I was in the worst flare

> > of my life that nothing would get under control. Lost 37 pounds in 4

> > months, going to the bathroom more than 25 times a day, horrible pain all

> > the time and pain so bad when I would go to the bathroom that it would

> > make me vomit (I kept a cooler with ice in it in the bathroom so that I

> > could put the ice on my stomach as I eliminated) or pass out. B and M was

> > all that came out of me. I refused Remicade until the last possible hour

> > and then gave in. I was very thankful for it and still am thankful for

> > the time it gave me.

> >

> > Are there

> >> any side effects that you have from taking Remicade?

> >

> > Yes. I got sick very easily (colds). I also had 4 skin staph infections

> > that were very difficult to treat and have scars from. My drs are also

> > under the impression it was Remicade that killed my kidney function. I

> > was at 92 but it dropped to 30 and now I am fighting for my kidneys as

> > well. You have blood work done every time you have an infusion so the drs

> > can monitor your health. My dr missed my drop from 92 to 57 and

> > overlooked the continued drop for 8 months before a different doctor

> > caught it. Hopefully your dr will pay better attention to your lab work.

> > I have learned to request copies of everything every time I have blood

> > work done and i examine it myself. I taught myself what all those numbers

> > mean so I can be in charge.

> >

> > If used in conjunction with

> >> the SCD will I be healed?

> >

> > We cannot answer this. Everyone responds differently. SCD heals,

> > Remicade shuts things down so that you can heal. No matter what you

> > decide, a change in diet and lifestyle should be top priority. You have

> > to make that decision for yourself and your future, even if the changes

> > are hard or seem impossible. They aren't. You just have to decide what

> > you want in life. Health or sickness. SCd can guide most on the path to

> > wellness if you give it a solid chance.

> >

> >> Given those two questions, would anyone here recommend SCD over Remicade

> >> (don't

> >> take it at all), or Remicade over the SCD?

> >

> > Remicade is a bandaid, just like all the other immunosupressant drugs out

> > there. Even on Remicade, if you are a positive responder, that doesn't

> > mean you will always be. You can still flare. When I asked my dr what

> > they would do if I flared on Remicade, they said " give you Prednisone "

> >

> >

> > How long does a person need to take

> >> Remicade, are we talking years, months, weeks?

> >

> > Remicade is now a " maintenance " therapy/drug. You would likely be on it

> > for as long as you tolerate it. It is not meant to get on, and get off,

> > and get back on during a flare anymore. If you do stop taking it and then

> > try again later, you could have a terrible reaction to it because your

> > body might build up antibodies against it. This can happen in as little

> > as 12 weeks.

> >

> >

> > Once getting off Remicade, what

> >> are the chances of Crohn's returning?

> >

> > Nobody can know this, but my experience is YES, the UC/C returned, though

> > not as bad (I am on LDN and though was recently " flaring " that meant one

> > bathroom trip everyday with pain, B and M as opposed to every hour or

> > more, so I think the LDN helped keep me stable until I gave my intestines

> > a rest with the intro for a while (as a side note, with a very extended

> > intro diet among other things, after 3 weeks, the bleeding has stopped and

> > the last 2 days I have had normal BMs. Praise GOD!!)

> >

> > How bad is it to have these chemicals in

> >> your body?

> >

> > My personal belief is that we were created with an immune system for a

> > reason. Though shutting it down might seem like a good idea for some, I

> > don't feel that way. When you shut down the immune system, you open your

> > body up to a whole host of other issues. Cancer, infections, etc. Not

> > good.

> >

> >

> > If your choice was down to Remicade or Surgery what would it be?

> >

> > I chose Remicade before. But, this is a hard question and not one that you

> > can approach lightly. Of course I don't want a baggie hanging off of me

> > for the rest of my life, but because I have already done Remicade and it

> > might have damaged a vital organ (the kidneys ARE damaged, we just can't

> > be CERTAIN it was the Remicade), I am not willing to do another

> > immunosupressant until I have exhausted all of my options. I am on a

> > quest to find ways to strengthen my immune system, but that is just me

> > personally. If nothing else works, I would rather have my colon removed

> > than take another drug that will shut down my immune system. But that is

> > MY story, yours might be completely different. I should add that I do not

> > tolerate any ASA drugs, azulfidine, methotrexate, my enzyme activity is

> > too low to use Immuran/6MP safely and can't use others because of my

> > kidneys so my choices are quite limited. I am looking into anti-oxidant

> > therapy and helminthic therapy if my problems continue.

> >

> >> Would a possible answer be that I need to combine the SCD with Remicade?

> >

> > I did both for most of the time I was on Remicade and I felt great until

> > my kidneys began to fail. But even with SCd and Remicade, sometimes I

> > would over eat something legal and have GI troubles. YOu really have to

> > work out what is best for your body and have a very personal plan.

> >

> >> Does anyone else know of something besides Remicade that I should

> >> consider?

> >

> > SCD and LDN together are a helpful combo. I also have supplements that I

> > use (high doses of Omegas, Vit C, Vit D, selenium and I am looking into a

> > way to increase how much Glutathione my body makes to help keep

> > inflammation in check).

> >

> >

> > indeterminent UC/C

> > LDN and SCD with additional supplements

> >

> >

> >

> >

> >

> >

> >

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

> >

> >