Continued pain after Collectomy

Hi there,
My 17 year old daughter continues to experience IBD pain even after her surgery to remove most of her colon. It seems that the 1" cuff that is left is still diseased, and the cause of her pain. Despite her being on Stelara, it is not working to cure her pain. She passes blood in her mucus, and has rectal pain; and doctors have confirmed via scope that her colon is inflamed. Has anyone had any luck with a drug, procedure, diet, or other solution in this situation? We are desperate to give our beautiful girl a normal life, after watching her suffer for 9 years, it is becoming unbearable. Thank you for sharing.

I am so sorry she's struggling. I think she may need to see a surgeon to see if there's anything that can be done to reduce the cuff. It's that, or try medication until you find something that works. I had surgery years ago and I had the mucusectony procedure that strips the cells from the cuff so it can't develop inflammation, but a lot of surgeons don't recommend it.

Does she have a jpouch?