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SCDers---where is your disease

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Crohn's Disease
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Posted 3/13/2012 8:47 PM (GMT 0)
Im getting desperate. My stricture is not improving, I'm doubled up on cimzia now (two shots every two weeks), taking MTX and 30 mg of prednisone. I'm wondering if those who are on SCD could comment on the location/extent of their disease? Just in the colon? Small intestines? Patches everywhere? I've heard it works better for people with small intestinal disease than large (like me) but that could be hogwash. I would really appreciate your thoughts.
Posted 3/13/2012 9:40 PM (GMT 0)
I don't know (my daughter has a UC dx and we've tried scd twice, once with some improvement but resulting in a major uncontrollable flare and second time too much weight loss) but I've heard it works better for CD than UC. It works on the same principle as the elemental diet which works for CD and not UC. Elaine Gottschall (who popularized the diet) had a daughter with a UC dx though. Even if she did actually have CD it was in the colon. I hope others chime in but I think it's worth a good shot.
Posted 3/13/2012 10:38 PM (GMT 0)
I'm not on it now, but I was in the past with quite a bit of success. I have CD in the large intestine - Crohn's Colitis. It worked for me and any time my guts get to flaring I go back on a modified form of the diet. My CD is "moderate to severe". I don't think SCD can undo a stricture, but it could possibly allow your gut to heal and be less inflamed at the area of the stricture. I think it's worth trying if you want to.
Posted 3/14/2012 12:13 PM (GMT 0)
My cosuin is following the SCD diet 100% without any cheating after he was diagnosed with CD in Jan 2012 with massive inflammation and pain in the illium and almost a stricture.  He had no other symptoms like D or blood, all he had was just the severe pain.

GI started him on 40mg steriods daily and now he has tappeered down to 15mg daily plus 1000mg pentassa 3xday plus the SCD diet.  

Now, has he seen any improvement from being on the SCD diet?  That is really hard to say.  One thing though he can say is, he is not getting any worst.  The pain is mostly gone, except for bouts now and then which he atrributes to what he ate.   Is this improvement because of the diet, or the drugs?  We don't know at this point, but the diet can't hurt, so he has nothing to loose by trying it.  

From what I have read, the diet takes 6 months to year of dedication until you really see some improvement, especially when it comes to inflammation.   Now for symtoms like D or mucus in BMs, I have read that the diet can show improvement in some people within a few weeks.  Maybe some other SCDers can weight in on thier experiences. 

  

Post Edited (NY-Sooner) : 3/14/2012 6:54:11 AM (GMT-6)

Posted 3/14/2012 4:15 PM (GMT 0)
According to Elaine, you should see some (however minor) improvement in the first month and if you do, stick to it though the ups and downs, it will work. I know people who have done it for a year and then had massive improvement and some who improved initially and then went backwards or only improved up to a certain point and then plateaued. I think you just have to try it out and see how long you can commit to it based on your motivation and improvement. Many have to "tweak" the diet (ie. remove carbs like honey, almond flour, dairy, eggs).
Posted 3/15/2012 12:49 AM (GMT 0)
Thanks for all the replies you guys. Sounds this diet might be worth a shot, no matter how constricting it may be.

Kind of having a crappy night, I just saw that I got a B in my surgery rotation and I'm so bummed about it. This dd and all the crap (literally) I have to deal with--and all my work for a B.
Posted 3/15/2012 6:22 AM (GMT 0)
killcolitis got it right. I did the diet for 8 months with little or no results. A the 8 month mark I went back to the intro diet, and then very slowly added foods sticking to the phases on pecanbread.com. The reference to diet "tweaks" is also very important. I now have so many I forget them all, I just eat a certain way that works, but some are, I am very low carb, that means I now the carb count of everything I eat and select fruits and veg based on my daily carb target. I do not eat bananas and squash is only a holiday treat. I cook all veg and do not eat salad. I use cocnut oil for all cooking and macadamia for mayo. I eat lots of cinimon and tumeric. I make my own vanilla extract. There are more I am sure but you get the picture. Over time, and with help from others I have figured what works for me. Just reading the book did nto give results. This really is a program that you have to figure out for you.

I have been a bit busy and lazy and the weather has been bad, so not riding much but last weekend I rode 40 miles on my bicycle on Sat and again on Sunday. I used to be sick daily for months in a row, so I can not help but be enthusiastic.

BTW some see the food as limiting I see it as amazing. I just had a grilled chicken with adobe sauce with grilled organic asparagus. It takes a while to figure out but you can eat fantastic tasting food every meal. I do

I wish you luck to find what works for you

Dave - my email is available

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