Shuddering at the thought....

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

MichaelR
Regular Member


Date Joined Aug 2009
Total Posts : 34
   Posted 12/17/2009 12:13 PM (GMT -7)   
Hi all,

I really want to give SCD a shot. My doc wants to put me on Remicade/Humira, and I do not want to move towards those drugs right now in my life; I have a wedding coming up in a few months, and don't want to risk anything.

If SCD can help, than why not give it a go? I wanted to know for those who are on SCD, how do you deal (initially) without any bread or pasta??? I eat sandwiches virtually everyday, and I see this is as DRASTIC change, and shuddering at the thought of elminating one of my most favorite foods.

Thoughts, advice, support are greatly appreciated!

Thanks,

Mike

jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 12/17/2009 12:25 PM (GMT -7)   
i didn't feel any difference and I went SCD hardcore overnight. It is a drastic change but you get used to it. And it's not that hard once you can eat fruits and raw veggies. but if i were you i'd read jini patel thompson's book from the get go. i discovered this book late in my scd diet (about 6 or 7 months into it). i think if i supplemented the SCD with probiotics and wild oregano oil from the get go I would have had faster results. and just btw, i think the statement "if you don't see improvement in the first month this diet is probably not for you" is kind of a bogus statement. it is my opinion that the author wrote this to cover her bases in case she got sued from someone dying. You should ideally try to attempt this diet when you are in relatively good shape. If you are in very bad shape it will take a long long time to kick in. I started it during a flare and it took forever to start working. I didn't see improvement until 4 months.
Crohn's Colitis diagnosed 6/08
SCD since 4/09
Remicade since 6/09
Boswellia + Acidophilus
Remission


Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 12/17/2009 12:45 PM (GMT -7)   
Hi Mike,

I'm actually on Remicade right now, but have very recently started SCD, because I worry about the possibility of it not working, and I would like to see if eventually I could maybe reduce my meds. I was diagnosed over the summer, and I wanted to jump right in to the diet. However I am a total sugar addict, and it was a bumpy ride in the beginning. Some people can go cold turkey which I admire, but for me it was a few months of getting on the diet, getting off the diet and beating myself up. Finally I just decided to slowly eliminate illegal foods, and that seemed to work out well for me. I finally just decided to go full force and be fanatical about the diet.

It is definitely doable, and this is coming from a carb/sugar addict. You may have some withdrawal symptoms or cravings, but after a while it gets much easier. If you really want, you could make bread from nut flour or make "pasta" from zucchini- there usually is some sort of substitution.

My advice would be know if you are a cold turkey kind of person or if you need some time to ease into it. Look up recipes, check out the sites and find foods that you like that you can enjoy. Try and focus more on what you can have than what you can't. I will say that at least for me, I do have a mental battle with myself most days, especially around this time when there's so many baked goods/cookies around. But I remind myself that the benefits of health out weigh the temporary pleasure of any illegal. I hope one day that it isn't even an issue.

Good luck, I hope it works well for you, and good luck with your wedding!

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 12/17/2009 12:49 PM (GMT -7)   
I am personally very skeptical of the concept of treating Crohns by diet alone. This is a disease of chronic inflammation, and there are a range of medications that are designed to address that central aspect of the disease and slow or stop the inflammatory process, which in turn can lead to more serious complications like strictures or fistulas and resulting surgeries. I fail to see how diet alone can address that. If your doctor is considering the biologics like remicade or humira, that would indicate that you ahve fairly serious disease. It may well be that some patients with mild to moderate Crohns can benefit from diet treatment, and it makes sense for all Crohns patients, medicated or not, to watch what we eat. But I cannot see how what you put into your inflamed digestive tract can wholly address the inflammation that is in there. As many posters here have noted from sad experience, failing to confront the ongoing inflammatory process that is at the heart of the disease can lead to major problems down the road. A diabetic with seriously elevated blood sugar would be self-destructive to try to handle that with diet alone, althogh diet would surely be a component of treatment. These medications exist for a reason -- they work in a huge majority of patients. The entire holistic approach to health is worthy, but it is not the ONLY approach. There is a reason the average life span has advanced from 40 to 80 in just a century. That reason is modern medicine. Use it.

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 12/17/2009 2:51 PM (GMT -7)   
There is some possibility that diet can reduce inflammation. It is not yet the subject of a study, but it is not hard to connect the dots. First, there is a characteristic of Crohn's called mesenteric fat or fat wrapping. It was described by Dr. Crohn when he first identified the disease. Since fat has been considered a simple store of energy until fairly recently - about fifteen years ago - it has been neglected in research. More recent investigations have shown that this fat reacts to intestinal inflammation with an inflammatory response of its own - making the inflammation much more pronounced. In fact, mesenteric fat wrapping is associated with 100% of resections and only occurs in Crohn's. For background in fat wrapping, see: http://www.practicalgastro.com/pdf/June06/ArsenescuArticle.pdf

The next bit is based on a couple of assumptions, but nothing too radical. Research on obesity describes similar visceral fat and notes that it uses twice the glucose that regular subcutaneous fat uses. It further describes a similar inflammatory response from visceral fat which is associated with the general inflammation that causes type II diabetes. Finally, it notes that the higher glucose requirement of visceral fat causes it to be reduced preferentially when weight is lost on a low glycemic index diet - a diet that reduces blood sugar levels. The article stated that a loss of 5 - 10% of body weight is enough to substantially reduce visceral fat and the inflammation that comes with it. The SCD is, by coincidence, a diet that avoids sugars and sources of blood sugar rise to an extreme. For the article on obesity and visceral fat, see: http://www.biomedcentral.com/content/pdf/1743-7075-1-12.pdf

The interesting bits are on page 14, but there is a lot of other information on the fat/inflammation connection before that.

Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 12/17/2009 2:54 PM (GMT -7)   
I am also getting married in a few months (April) And the only reason I feel like I was able to plan and feel comfertable in going to my destination wedding is because of Humira.
Just my opinion
I wish you the best of luck in which ever option you pick.
Good luck with you wedding. :) :)
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/17/2009 2:55 PM (GMT -7)   
Hi MichaelR,

I am with Mike B here, I think you would be wiser in doing the meds and the diet together. You should consider them as complimentary of eachother. I went med free once and paid for it dearly with an emergency resection. I am sure you would like to avoid that scenario. So please consider doing both the Remicade and the diet together.
 
Oh by the way, I live on a low residue diet all the time and it works well for me and I am currently in remission.  You might want to google that.  Sandwiches agree with me very well, in fact I eat one everyday for lunch.  So check that diet out and see if it would work for you.  Good luck!

Hugs
Gail*Nanners*


Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 12/17/2009 3:01 PM (GMT -7)   
Nanner's,
what kind of sandwhich's do you eat?
I've been eating turckey (I know I know) don't usually have a problem. But with my flares this past week and 2 ER visits I'd like to change my diet a little more to.. less
lol
Thanks
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 12/18/2009 7:26 AM (GMT -7)   
Mike, are you taking anything now?  Why does your dr want to change your treatment?  I am on Remicade and it has worked for me but I always went through a medicine change when I was going through a big flare.
 
It's hard to make a change before a big event.  If you have a good doctor and you are under good care then that is one of the most important things.  Do whatever you can to keep your stress levels down! :)
 
Good luck with your wedding!!
32 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, trying to remember to take Multivitamin and Calcium, need to start taking Probiotics and Omega 3-6-9 and Vitamin D
 
 


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 12/18/2009 8:48 AM (GMT -7)   
MichaelR said...

I have a wedding coming up in a few months, and don't want to risk anything.

This is a very telling statement which you need to evaluate carefully.  My advice is to think carefully about what is riskier:
1) Turning down medical advice and trying to improve your disease state with a diet.  Keep in mind that if the diet does work for you, in order for you to feel better at your wedding than you do right now the diet will have to work pretty much instantly.
2) Taking your GI's advice and treating your disease aggressively.
 
Good luck!
Mike
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


MichaelR
Regular Member


Date Joined Aug 2009
Total Posts : 34
   Posted 12/18/2009 9:13 AM (GMT -7)   
wednesday2007 said...
Mike, are you taking anything now? Why does your dr want to change your treatment? I am on Remicade and it has worked for me but I always went through a medicine change when I was going through a big flare.


It's hard to make a change before a big event. If you have a good doctor and you are under good care then that is one of the most important things. Do whatever you can to keep your stress levels down! :)



Good luck with your wedding!!



Yep. I am currently on Imuran and Entocort. He wants to change my treatment bc there is active inflammation. He had only recently put me on Entocort to see if things could get under control, and it is working with moderate success. I really just prefer to wait it out to try any new meds (aside for the entocort), until after the wedding.

Thanks for yout advice!

MichaelR
Regular Member


Date Joined Aug 2009
Total Posts : 34
   Posted 12/18/2009 9:17 AM (GMT -7)   
Nanners said...
Hi MichaelR,

I am with Mike B here, I think you would be wiser in doing the meds and the diet together. You should consider them as complimentary of eachother. I went med free once and paid for it dearly with an emergency resection. I am sure you would like to avoid that scenario. So please consider doing both the Remicade and the diet together.


Oh by the way, I live on a low residue diet all the time and it works well for me and I am currently in remission. You might want to google that. Sandwiches agree with me very well, in fact I eat one everyday for lunch. So check that diet out and see if it would work for you. Good luck!

Hugs
Gail*Nanners*


Thanks for the advice Mike. I had a quick look at the low residue diet....do you take any supplements with the diet?? Thanks.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 12/18/2009 9:18 AM (GMT -7)   
I am a big believer in a multiprong approach in disease management. I would lean toward doing meds and diet together. I think getting your ANA tested to establish a base line before you even start any anti-TNF drugs is also a good idea.
Second thing I would think about is getting any vit testing done, such as b12, d, etc


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 12/18/2009 9:34:19 AM (GMT-7)


MichaelR
Regular Member


Date Joined Aug 2009
Total Posts : 34
   Posted 12/18/2009 9:19 AM (GMT -7)   
Rider Fan said...
MichaelR said...


I have a wedding coming up in a few months, and don't want to risk anything.

This is a very telling statement which you need to evaluate carefully. My advice is to think carefully about what is riskier:
1) Turning down medical advice and trying to improve your disease state with a diet. Keep in mind that if the diet does work for you, in order for you to feel better at your wedding than you do right now the diet will have to work pretty much instantly.

2) Taking your GI's advice and treating your disease aggressively.



Good luck!

Mike


...just to clarify, I am on Imuran and Entocort now...and the Entocort seems to working well. I know the drug isn't a long term therapy though....thanks for the advide

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 12/18/2009 9:36 AM (GMT -7)   
Actually entocourt and Immuran can be long term therapies. But of course I understand why you would want to see about SCD.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 12/18/2009 10:58 AM (GMT -7)   
Oh I see. Didn't realize you were on Imuran already. Good luck!
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/18/2009 11:47 AM (GMT -7)   
Michael I take probiotics (Primadolphilus Reuteri), get B12 shots bi weekly, Calcium with Vit D, and 3000 units of Vitamin D. I can't take multi vitamins as they upset my stomach, but these supplements work well for me.


RAD... I eat the chicken breast sandwiches from Subway. I never thought I would be a person who eats the samething almost everyday, but it works really well for me. I eat these sandwiches at work, and have no residual problems from them. I like turkey too.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MichaelR
Regular Member


Date Joined Aug 2009
Total Posts : 34
   Posted 12/18/2009 11:51 AM (GMT -7)   
Nanners said...
Michael I take probiotics (Primadolphilus Reuteri), get B12 shots bi weekly, Calcium with Vit D, and 3000 units of Vitamin D. I can't take multi vitamins as they upset my stomach, but these supplements work well for me.


RAD... I eat the chicken breast sandwiches from Subway. I never thought I would be a person who eats the samething almost everyday, but it works really well for me. I eat these sandwiches at work, and have no residual problems from them. I like turkey too.

Hugs
Gail*Nanners*


Can you recommend a good probiotic/supplier?

Do you eat anything on the chicken sandwich? or just the chicken and the bread?

Thanks!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/18/2009 12:57 PM (GMT -7)   
I put some spread and cheese on it, and becuz I am currently in remission I also add some iceberg lettuce. You should just add whatever agrees with you, since many of us are different in what we can and cannot eat.

The probiotic I am using was recommended by another HW member and its by Nature's Way and called Primadolphilus Reuteri. It can be found in the refrigerated section at your local healthfood store. Others use Culterelle, VSL#3, and Align with success. The one I use have 5 billion CFU in it. You only need to take 1 a day. I buy a box of 30 and it cost me like $8 a month. Hope that helps.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MichaelR
Regular Member


Date Joined Aug 2009
Total Posts : 34
   Posted 12/18/2009 1:27 PM (GMT -7)   
Nanners said...
I put some spread and cheese on it, and becuz I am currently in remission I also add some iceberg lettuce. You should just add whatever agrees with you, since many of us are different in what we can and cannot eat.

The probiotic I am using was recommended by another HW member and its by Nature's Way and called Primadolphilus Reuteri. It can be found in the refrigerated section at your local healthfood store. Others use Culterelle, VSL#3, and Align with success. The one I use have 5 billion CFU in it. You only need to take 1 a day. I buy a box of 30 and it cost me like $8 a month. Hope that helps.


Thanks! I am going to swing by whole foods after work and check the probiotic out :)

wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 12/18/2009 6:24 PM (GMT -7)   
Also get Vitamin D - the 5,000 units is the highest potency - there have been a lot of studies linking low vitamin D levels to imflammation in the body for a variety of reasons.
32 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, trying to remember to take Multivitamin and Calcium, need to start taking Probiotics and Omega 3-6-9 and Vitamin D
 
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/19/2009 8:36 AM (GMT -7)   
I agree with Vitamin D suggestion. I just started taking it in Sept 2009, and it has helped alot with my fatigue and Fibro pain.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

minou
Regular Member


Date Joined Jan 2005
Total Posts : 140
   Posted 12/19/2009 8:53 AM (GMT -7)   
I had the same experience as RA&CD132010.

I was married this past September. When I got engaged I was in a really bad flare, even wedding dress shopping was difficult. So I gave myself a year to get better... I saw a Naturopath, an Osteopath, I tried the SCD diet, the IBS diet, Imuran, nothing helped. I wanted to postpone the wedding. Finally, I was put on Humira in July and only then did I start feeling better. I had a GREAT wedding and honeymoon.

MichaelR
Regular Member


Date Joined Aug 2009
Total Posts : 34
   Posted 12/19/2009 9:01 AM (GMT -7)   
minou said...
I had the same experience as RA&CD132010.

I was married this past September. When I got engaged I was in a really bad flare, even wedding dress shopping was difficult. So I gave myself a year to get better... I saw a Naturopath, an Osteopath, I tried the SCD diet, the IBS diet, Imuran, nothing helped. I wanted to postpone the wedding. Finally, I was put on Humira in July and only then did I start feeling better. I had a GREAT wedding and honeymoon.


are you still on humira?

isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 12/19/2009 3:30 PM (GMT -7)   
I have been on both Humira and Remicade and I was having nightmares before I started the remicade due to the side affects and stuff like that. And I was really scared.

BUT ones I started feeling so much better I forgot about all that stuff ;)
And the doctors do take good care of you and follow up on blood work and stuff like that.

Remicade is the best thing that has happen to me this year until I got allergic to it.
Now I am hoping that Humira will do the same.
25 year old female
Diagnosed with :
Endometriosis march 2007
Anxiety disorder august 2007
CD/UC they dont know witch October 2008
Autoimmune Hepatitis in July 2009

Medication - Asacol, Pariet, Cipralex and Cerazette.
Past medication Remicade
My wonderful dogs :) ~ www.poodle.is ~

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 05, 2016 3:48 AM (GMT -7)
There are a total of 2,732,879 posts in 301,067 threads.
View Active Threads


Who's Online
This forum has 151222 registered members. Please welcome our newest member, TAS-MS/lupy.
211 Guest(s), 2 Registered Member(s) are currently online.  Details
delta30, sharron19


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer