Diet/Lifestyle Change. Did it work?

[Jajabinks]

Hello everyone,

This year I developed what I consider to be one of the worse extra intestinal manifestations that exist with Crohns. It seems I now have Spondylitis which has debilitated me to the point where I cannot even clean my home without almost passing out and being bedridden for the next 3 days. Now you probably think I am exaggerating but I am a mom to a very active 5 year old boy and a wife to a man who is so used to seeing me happy and the house clean with food on the table. These are the things I enjoy most in life, pleasing my family and running around with my kid so you can imagine the depression that set in when this condition developed.

I blame myself a lot "I shouldn't have listened to those doctors when they told me I could eat anything I want....I should have change my life and diet completely....I should have never ate the lunch at my college or the Buffalo Wild Wings that sent me on a non-stop flare....."

My question is....how many of you changed your lifestyles immediately after diagnosis and managed to stay out of the hospital and away from the horrible extra manifestations of this disease?

 

[David]

I am all about diet and lifestyle changes and believe it can help control SOME but definitely not all forms of early Crohn's disease. I also believe it is critical as part of a broader treatment regimen in all manifestations of Crohn's. But in my opinion, there comes a point in the progression of the disease where diet and lifestyle alone just won't do it. In my opinion, if you have developed Spondylitis, you're passed that point I know I mentioned the clinical trial in my signature below in another thread, but based upon everything you've said, I REALLY think it is an opportunity you should explore. A few people currently in the trial are detailing their experiences here: http://www.crohnsforum.com/showthread.php?t=58980

All my best to you.

 

[Maya142]

David - just out of curiosity (since my daughter is 17 and I doubt she would eligible since she's a minor) would SSI work for someone with both AS and Crohn's? I thought it was site specific so would only work in the gut?

 

[David]

Maya, I don't know. If someone had Crohn's which resulted in AS as an extraintestinal manifestation, then I would be hopeful that deep, stable remission of the Crohn's would also stop progression of the AS and maybe even allow for healing to take place.

If the AS was completely unrelated to the Crohn's and the person was just unlucky to have both, then I would be much more skeptical of it working.

 

[Maya142]

My daughter was diagnosed the other way around - arthritis first, then Crohn's, so not sure it would work. In December she had mostly clean scopes (!!) but MRIs showed a lot of inflammation in her joints while on Remicade, so the AS and IBD seem to flare independently of each other.
Hopefully, there will be on more research on it soon, it sounds really promising!

 

[David]

Your poor daughter My heart goes out to her.

 

[Jajabinks]

Thank you for the information David! Have you managed to avoid the extra stuff that comes with IBD? Lady Organic sent me this link earlier today n I was amazed by it!

 

[Lady Organic]

David - just out of curiosity (since my daughter is 17 and I doubt she would eligible since she's a minor) would SSI work for someone with both AS and Crohn's? I thought it was site specific so would only work in the gut?

I went through much of the website and info given. From what I understand, it appears that different treatments are given for different pathologies. For instance in the compassionnate program, one CD patient suffering from arthritis (related to CD) received 2 treatments, one for crohns and one for arthritis. Both were a sucess. The doctors mention in the videos that many autoimmune diseases can be potentially treated with the different treatments, so hopefully one will be working for AS.