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Post surgery remission - your experiences?

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Crohn's Disease
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Posted 6/12/2014 10:25 PM (GMT 0)
Hey all,

I'm wondering. How many of you have been in remission post surgery, for how long and what type of diet do you eat? I am considering scd, or gluten free, or vegan but I'm a little lost and confused. I am already vegetarian by the way. However I love quinoa and don't want to give it up. Bread on the other hand I'm willing to ditch.

I'm 2 weeks post surgery and wanting to make some changes. What has worked for you to retain remission diet-wise? Am I realistic in thinking a vegetarian bread free diet with quinoa and some tofu will work?

Thanks in advance
Posted 6/13/2014 10:57 AM (GMT 0)
I had a bowel resection by open surgery in Feb 2011. I am not on any meds and eat normally. I occasionally get a bad week when I have some slight pain but that only happens say twice a year.
My only issue was a 10cm hernia after the bowel surgery which required further surgery (mesh)

May I have just been lucky, it makes up for the 6 years of hell prior to surgery

I hope you have a long remission  turn
Posted 6/13/2014 12:30 PM (GMT 0)
Hi! My resection was a Lonnnnng time ago (1990). But wanted to chime in for you. I went 11 years post surgery in pretty much full remission. I don't think my diet would work for you though as I am the opposite of vegetarian. I eliminated most fiber from my diet. For the first couple of years I ate mostly bread, plain chicken and eggs. I still try not to eat anything that is more than 3g of fiber per serving. It really is an experiment in what works for you.

I really think focusing only on diet is difficult. There are so many other factors. I say that as I hate to see people beat themselves up thinking they ruined a remission just because they did or did not eat the right things. My remission was likely part luck, part diet, part meds, part stubborness.
Posted 6/13/2014 3:30 PM (GMT 0)
Hi! I had an emergency resection in January, 2011, and have been hanging in there ever since with Pentasa. I do have Crohn's symptoms, partial obstructions from time to time, and flares (I seem to be in one now, though it may be calming down...we'll see!), but when times are good I can eat pretty well (I am vegan but not grain-free, and love fruit and vegetables so much, but have to be careful!), exercise, and sing/perform.

Everybody is different, so it's hard to know what the road ahead will be. Gentle experimentation and slow introduction of foods was a good way for me, after surgery.

My biggest problem is probably the anxiety I battle after the craziness that led up to my surgery and the aftermath of it. It was a very rough time, and it definitely left me a bit scarred emotionally and kind of freaked out about the Crohn's. If you can find some support in that area, it will benefit you greatly.

Also, Habs, thanks for mentioning the guilt factor; it's something I deal with a lot, and it's nice to read comforting words. It's easy to get caught up in blaming one's self, when really, this disease can behave so unpredictably, and it's not always as simple as, "If I'd only done/not done x, I'd be feeling ok."

Best wishes to all.
Posted 6/13/2014 5:36 PM (GMT 0)
I got three years of remission out of my surgery. I was on Cimzia for that time, but I had no issues and ate whatever I wanted. Starting in the beginning of 2013, everything exploded and I've been flaring on and off since. The Cimzia was not working and I switched to Simponi but it's not working very well either. It's different for everyone, my uncle got several decades of remission out of his first resection. I'm not so lucky, I guess! As for diet- I try and avoid things that cause pain but when I'm flaring that's pretty much everything so...
Posted 6/13/2014 6:28 PM (GMT 0)
My cousin had 5 inches of illium and the valve removed in 6/2012 and she is in 100% remission today.  No symptoms of her CD, no problems with BMs, nothing. She feels better then she has in years and wished she had had the surgery much earlier then listening to GI who insisted she could control the problem with humira.  The only drug she takes today is pentassa and she also follows the SCD diet.
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