After a number of tests, we've been down graded from possible Crohn's to very bad pouchitis. This was unbelievable to me after seeing the actual holes in my small intestine. But, let's go with what the specialists say.
They put me on suppository steroids, UC oral medications, pain medication and no real information on diet or lifestyle change. I'm not a fan of taking any steroid at this point because of the deadbone issue. (To catch you up on that, I was experiencing sharp pains in my left knee when I would walk, stand, or even straightening my leg while in bed. I went to the doctors, so many doctors, who did some tests, so many tests, for them to tell me that part of my bone is showing signs of necrosis, or death! Likely caused by prolonged use of steroids. This is commonly found in women in their sixties or woman who have been on steroids for other chronic illnesses.) So now I'm really not a fan of steroids.
The doctor assured me that the suppository will not affect the bone issues.
Because I was not told to change my diet (I had gone back to my regular, healthy-ish diet that included grains, beans, carbs, and sugar), I kept eating like normal and taking all my medication, with very little changes to my situation.
We tried many weeks of antibiotics that lead to C. Diff and a whole host of additional issues.
Months went by with me going from specialist to specialist for digestion and bones, and getting this test and that test. But nothing was helping. Even the tests would give us some information but still no clear answer.
I finally was sent back to my General Practitioner to refer me to pain management. I was just expected to live with pain and not being able to walk in my 30's until it got so bad to require surgery. I told her I need something. I couldn't walk, I couldn't drive my manual car, I couldn't walk my dog. I couldn't live like that. I asked for a cane. She obliged and offered another suggestion. "I have a book I'd like you to read and try the diet. You'll be ahead of the game since you've already done Paleo, but there are a few more restrictions. But I think it will help."
She was so right. The book was The Autoimmune Solution by Dr Myers, and the diet restricted grains, dairy, beans, corn, potatoes (same as the Paleo diet), but also nightshade plants (such as tomatoes, peppers and eggplants).
Within a week, I didn't need the cane and the pain in my abdomen began to finally subside. Unbelievable. The specialists still don't believe the diet makes a difference but I'm living it.
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