Hi...I've just had exploratory surgery to find the cause of worsening upper abdominal pain over the last 15 months. It revealed multiple blue lesions on my small intestine. The feeling is I have BRBN syndrome, however they may not do an enteroscopy as they don't think it's the cause of my pain. However how do they know it's not! I'm trying to find out if other patients suffer abdominal pain without GI blockages? Hope to get this conversation started as I'd appreciate any feedback.

Hey veem. I hope you are doing fine and well. I'm Ishaan from India, I also have BRBNS, and because of that I've had a very tough life, you may understand that. I also had a surgery in 2018 because i had lesions in my intestine, i had lost a lot of blood before the surgery due the the internal bleeding from the lesions, my hemoglobin went down to 2.4 that time. That's how we found out something was seriously wrong. I was diagnosed in that time frame as well, like I've that this disease my whole life but doctors weren't able to identify what disease i had. Well due to this disease i have a big lesion on my right knee which causes me disability as well cause I can't open my leg Fully and also can't put any weight of that leg. Do you also have a disability because of this? I would really like to talk to you about this. I know this message of yours is from 2018, you may not even get the notification of this post, but it was worth writing atleast. I hope you read this and we can talk more. Have a nice day.