Thanks airey2 for your response. Its interesting that you mention muscle spasms due to damaged nerves being found by your GI specialist. When we went to the GI doctor, they asked if there was any blood in her stool. Since there wasn't, they didn't think it was worthwhile to do a colonoscopy and sent us on our way. What tests/assessment did the GI specialists do to identify the muscle spasms/damaged nerves? When you would experience pain, about how long would an episode of pain last for you? Maybe we should try visiting a different GI doctor and seeing what they can test?
She got her tubes removed because she also has dysautonomia and was told she would not be able to carry a child. Then when visiting the OBGYN, she was advised that removing the tubes could potentially reduce her chance of ovarian cancer because it sometimes starts in the fallopian tubes. We were told multiple times it was a simple procedure with minimal risks of complications.
A few months into the pain (i.e. after the surgery) we did try adjusting her diet. She has many food sensitivities to begin with, so we thought going gluten free might reduce some inflammation or help in some way. We went on a shopping spree and replaced everything in the pantry with gluten free alternatives. She did it for about 3 weeks but without any change whatsoever in the episodes of pain. However, we did not do any probiotics in combination with the gluten free diet.
Thanks again for sharing your experience and taking the time to respond.