Diet changes - not what you would think

I am glad to hear you found something that works so well for you. I cannot do high fiber foods as I have the stricturing type of Crohns, and fiber just kills me.

Thanks for the reply, nanners.  That's why I gave a little of my history prior to saying what is working for me.  I realize that what works for one may not work for another, but for those with a similar history (i.e. inflammatory stage without stricturing, surgery, other complications) this may very well help.  I just wanted to put this out there since from what I've heard and read, most Crohn's patients (regardless of severity) are told to stay away from fiber. 

Post Edited (kmflutist) : 6/16/2011 1:57:25 PM (GMT-6)

I was DXed at the exact same time as you were. You don't mention how old you are or what your symptoms were that led you to a doctor in the first place or where your inflammation is. I too was on Entocort and Pentasa for the first year of my diagnosis. The difference is that after a small bowel series was performed also in Jan 2010, it was discovered that I had a 20cm stricture in the terminal ileum. Because of this I HAD TO STOP eating all fiber and go on a low residue diet so I wouldn't have anymore painful, scary, and dangerous blockages.

I can't begin to tell you how much this has changed my diet as I have been a vegetarian for most of my life. I became one when I was 14 and have never "cheated" in all this time. I am now 56. I have always eaten a VERY HIGH fiber diet. In fact most of what I ate was high in fiber. The doctors all agree that this along with the fact that I gave up eating red meat long ago was the only reason I have been able to glide under the radar and not develop this horrible disease until now. Now I have to eat "white" food until my operation in August. I can't even eat white rice as it is larger than my stricture and even though I chew my food carefully there's no way I can be sure that one or two grains don't get through.

I would like to give you some advice. Since your doctor RXed Entocort and Pentasa back then, it is probably safe for me to say that your inflammation is somewhere in your terminal ileum as that is where those meds do their best work. I was told that a small bowel series CANNOT detect for sure whether inflammation is active or what they are seeing is permanent scarring. Since you can't be sure how long all this was going on before you were DXed it would be impossible to be sure. You might be making your TI more inflamed by eating rough food and thus creating more scar tissue and eventually a stricture or something else.

Like I already mentioned I don't know all your symptoms and I am glad you are getting some relief with your new diet. For me it is my old diet and I miss it very much!
NY VEGGIE

I eat high fiber as well, I have had 9ft of ti and secum removed, so I don't suffer with strictures, I suffer from short bowel syndrome. so high fiber is good for me, when I'm flarinhg in my resected site I will fast, until it passes then onto fiber.

AG

NY Veggie - Sorry I failed to mention those details.  I am currently 32 and was 31 when diagnosed.  You're correct - the Crohn's is in my terminal ileum.  Very interesting info you offered and it gives me something to think about (and ask my Dr.).  My Dr. seemed to be confident in the results of my small bowel follow through.  My hospital has charts online and I was able to pull the results:

Findings: The terminal ileum demonstrates approximately 7 cm segment of
narrowed small bowel, with effacement of the normal architecture,
consistent with inflammatory changes in the terminal ileum. No evidence
of fistula or leaks. The remainder of the small bowel is normal in
appearance, with normal mucosal in caliber. Evidence of small fistulous
contained within the bowel wall of terminal ileum that do not extend to
the peritoneal cavity or other bowel.

IMPRESSION:

1. Narrowing of the lumen of the terminal ileum, approximately 7 cm in
length, with effacement the normal architecture consistent with
inflammatory changes of the distal ileum. Mucosal nodularity and
increased bowel wall thickness consistent with Crohn's disease.
2. Evidence of small fistulous contained within the bowel wall of
terminal ileum that do not extend to the peritoneal cavity or other bowel.

Based on this data, my doctor was comfy with allowing me to try out a high fiber diet.  Since I've started, my symptoms (pain, diarrhea, etc) have improved dramatically.  Do you think if I were making things worse down there, my symptoms would hint to as much?  I'm just wondering if this nurse is being careless in her instruction to Crohn's patients.  Also wanted to throw out there that my doctor is not involved in this study... he is just aware of it.  I am very confident in my doctor as he is "THE go-to Crohn's guy" in my region, however I am not one to blindly follow orders without doing my own digging. 

I'm so sorry you're limited on the foods you can eat now.  I know that must be very difficult!