What to expect with SCD diet and j-pouch/fistulas

Hi everyone,

Thanks in advance for any insight from folks who have tried SCD.

Long history as short as possible. I had emergency colectomy/j-pouch for UC in 2003. In 2009, I started to have perianal crohn's symptoms (fistulas/fissures) and was put on Remicade. For 6 years, disease was well controlled and I was even able to take out my one seton for a few years. Developed optic neuritis so had to stop Remicade (coincided with first pregnancy). Had baby in 2015. Ever since then, it has been a struggle. Currently on Entyvio.

My pouch always looks fine on endoscopy but fistula drainage is problematic and I have watery and increased BMs with lots of waking at night. I'm looking at a pouch flap/advancement surgery and feeling frustrated and not very hopeful it will work. I have tried paleo and whole 30.

I am on the intro to SCD and wondering what can I reasonably expect? Has anyone had success with this and what did your baseline look like? It seems like you need to go very slow on this diet to be successful but I'm afraid I'll be eating nothing but carrots and chicken for the rest of my life if I use loose stools as a criteria for moving forward. Any help or insight would be greatly appreciated.

9/30/174:16 PM

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Original Post

JulianaMember

Hi Ali, I see that this is an old post. I have a pouch since May 2017 and a new Crohn diagnosis. I have a couple of friends with Crohns that swear by the SCD diet, that it has kept them in remission without biologics. I recently started the SCD diet again (tried it when I had UC). My UC was too far gone to be treated by diet alone at that time unfortunately.

I am wondering how you did with the diet?

I will try anything at this point but a little worried about having loose stools without eating rice or starches. I might have to explore the legal vegetables and see what works.

Id like to avoid biologics if its possible. I have started using a clay product from Haida Gwaii, a remedy the natives used that is gaining popularity, its prescribed by naturopathic doctors.

Sending blessings to everyone battling autoimmune disease.

Juliana

10/27/218:46 PM

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