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remicade and scd diet at the same time??

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Ulcerative Colitis
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Posted 5/24/2011 9:44 AM (GMT 0)
Hi everyone! I was diagnosed with severe UC in 2009 and have tried pretty much every drug it seems like.. started with canasa, then lialda, then apriso, rowasa, and was steroid dependent for a long time until my Dr. put me on 6mp and remicade.. I've also tried being gluten-free, the Maker's diet, and a modified version of SCD... along with acupuncture treatments and chiropractic. Yes, I've tried everything and I'm still not in remission!
I am currently on Asacol HD (6/day), 6mp (1/day), and remicade.. Does that sound like a lot of drugs to be on at once?? I really would like to be free of medication so that I don't have any side effects to worry about and I would also like to have kids SOON.
I've started making my own yogurt and want to try the SCD again (for real this time, no cheating) but I just found out that remicade contains sucrose!! I just did my 4th infusion a couple weeks ago so it's probably gonna be in my system for at least another month and a half right? So I guess my question is: is it even worth trying the SCD diet when I'm on remicade and being injected with sucrose anyway?? Would I just be counter-acting the diet with the remicade?

I already tried skipping a remi infusion once and I flared after 1 month so I know my Dr. wouldn't let me try that again, plus he's not convinced that diet has anything to do with it. I'm actually switching insurance soon so I will get a new Dr and a second opinion but does anyone have any suggestions or experiences to share in the mean time?

thanx!
Posted 5/24/2011 11:03 AM (GMT 0)
I don't think it's a bad idea to try. I would imagine the amount of sucrose in Remicade is probably very low. I wouldn't expect SCD to be the magic cure unforotunately, I tried it when I was in a severe flare and I didn't see any improvement in my condition at all. Perhaps you will do better since you're starting it while your symptoms are calmer. People seem to have different reactions to every treatment method, some do well on SCD, others do well wth probiotics, others do well with 5ASAs...
Posted 5/24/2011 3:02 PM (GMT 0)
how annoying. HW just erased the long reply I just typed.

Yes, try SCD again. Skip the yogurt for now (I know bummer). Keep taking your meds. Good luck.
Posted 5/24/2011 5:03 PM (GMT 0)
SCD is supposed to lower the inflammation by reducing the UC trigger factors from your diet.

Remicade is supposed to lower the inflammation by reducing the activity of your immune system.

so they have the same goal. i don't see any reason not to do them toghether.

aggree with Imagardener - leave the yougurt for now. It does not work for all, and for some - me included - can trigger flares.

keep a food journal. there are SCD legal foods that you will probably find agressive to your gut. by keeping a daily food journal where you can record your foods and your general state you can eliminate those kind of foods.

good luck and i am sure that sometime soon you will be able to lower your medication dosage.
Posted 5/30/2011 4:07 AM (GMT 0)
Hi everyone - I was glad to come across this recent thread re: Remicade and SCD. I am actually in the process of getting off Remicade and I started GAPS (based on SCD) on March 1st. Has anyone seen any threads regarding getting off Remicade and SCD? I haven't been very successful in finding anyone out there that has been through this............................THanks in advance
Posted 6/1/2011 5:46 AM (GMT 0)
vb4girl, what's GAPS?

just wondering how many remicade infusions you've had and when your last infusion was? and are u in remission at the moment?

good luck!
Posted 6/1/2011 12:45 PM (GMT 0)
GAPS stands for "Gut & Psychology Syndrome". It's basis is SCD but emphasizes ferments and bone broth and so it's a little different. The INTRO period in GAPS is a little more intense also. It has been successful with healing the gut for many conditions including autism and mental disorders - hence the "psychology" part in the title:) Dr. Natasha McBride is the creator of it and here's some more info: http://www.gapsdiet.com/

To answer your question about infusions, I don't even know how many I've gotten...I've been getting them since summer of 2006, so for almost 5 years 8-9 weeks apart. However, I am now increasing the intervals of the infusions and my last one was in April, which was 13 weeks after the previous one. I re-read your first post...I didn't know about the sucrose in Remicade but I think that scd or gaps would be just fine to do along with Remicade. Especially if you are planning on getting off some meds. You need to heal your stomach by not sending offending foods down there:)

Do you know about the remicade antibody test? Is it only done through Prometheus or can it be ordered on a regular lab slip? I'd really like to know if Remicade is actually active in me right now.....

How did you implement SCD before? You said you wanted to try again but without "cheating"? Do you have symptoms now?
Posted 6/1/2011 12:59 PM (GMT 0)
Remicade is infused straight in to your blood, so Even if the amount of sucrose was signficant (which I doubt) then I dont see how it would in any way interfere with the Scd, which is about controlling exposure to certain carbs in the gut not the blood. I have used a lower carb version of the SCD for years- it never put me in full remission but I have done better on a low carb ScD than on a normal diet or the standard SCD , so I loosely keep it up. I don't really buy into the almost religious zealotry that sometimes exists over what is "legal" vs "illegal", nor do I think the SCD is all that scientific (the book is based on many old papers written in the 50s) but I think refined carbs are tricky for the gut, and know from trial and error that the low carb SCd- in my case - eliminates many foods that irritate me- but ultimately its a matter of trial and error for everyone. So in summary I think there is no contra-indication at all to combine ScD and remi.

Post Edited (Probiotic) : 6/1/2011 7:04:32 AM (GMT-6)

Posted 6/6/2011 8:53 AM (GMT 0)
my dr just ordered that promethius test on me! it was ordered on a different lab slip. i had no idea what that was but he said my test results came back fine... i still dont really know what that test is for, he doesn't explain things very well... (dont worry, getting a new GI soon)

when i tried the scd diet before i just followed it roughly... i'm pretty sure i ate illegal foods here and there and i wasn't making my own yogurt at the time. this time i actually re-read breaking the vicious cycle and found out there was a lot of info i overlooked the last time... so my plan is to try this diet strictly for a month (it says if u don't see improvements in a month it probably wont work for you) and see what happens...
the thing is that since i'm on remi, 6mp, and asacol HD i don't even know what is working and what is not, right? i figured the diet couldn't hurt and anything is worth a try to help reduce my meds...
currently i'm having regular BMs (once a day, rarely twice a day) it's med texture (not D but not totally formed) but there is ALWAYS a spot when i wipe... so i don't really consider myself in remission until i have a normal BM with no blood.
i'll keep u all posted on my scd diet journey thru the month!
thx and good luck to you all!
Posted 6/6/2011 12:39 PM (GMT 0)
about SCD from someone who's tried and failed, tried again years later and succeeded:

The way the book is written it is hard to really get a grip on what the intro diet is and then the full SCD. I tried very hard to adhere to it the 1st time but it didn't give me any positive results. This last time I paid much more attention to how my gut reacted and adjusted food intake. Even if it was "legal" on SCD I would remove any food that caused upset or D or C. This time I succeeded in getting remission.

It helps to keep a food journal keeping track of what you ate and as well as how many BM's and what other symptoms. Keep track of new supplements too. After healing I now can have some of the foods that my colon disliked back then.

Hopefully your gut will like SCD yogurt, it's delicious and easy to make. Unfortunately my gut just doesn't handle it boohoo.

P.S. Not mentioned in the book but I found helpful: soaking nuts to remove an enzyme before eating. Have to re-dry them in the oven but worth it, they are delicious. Don't eat nuts in the beginning and not too many when you start because they are fibrous and clog up your gut. Nut butters in small amounts are better after intro, again in small amount.
Posted 6/6/2011 2:38 PM (GMT 0)

colongirl! said...
so my plan is to try this diet strictly for a month (it says if u don't see improvements in a month it probably wont work for you) and see what happens...

For me first results came after more than 1 month... much more. as Immagardener says, it takes more than a month to see what foods - even legal - are good or not for you. I am still experimenting after 1 and a half year :) Anyway, bleeding should be the first to dissapear, or at least to lower a bit.

Keeping a food journal is the first commandment :)

The first reaction was that my artritis inflamation lowered verry fast in the first days on the diet. It was the sign that i am on the right track.

Good luck to you.
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