Skip to main content

Reply to "What Are The Chances Our Children Get IBD?"

She started with right hip pain at 5. By 10, it was worsening, so we got in with a Peds rheumatologist.

Plain film X-rays never showed a thing wrong with the joint. Her blood work was never conclusive.

Eventually, the physician requested an MRI (it was mostly pain focused in my daughter's "right hip"). Her MRI a month before her flare showed "sacroiiliitis and enthesitis (inflammation of the tendons)," so she got an unspecified spondylitis dx. They now link the two conditions, so it's considered enteropathic now. 

While awaiting Enbrel approval, as the rheumatologist said they have a very low threshold for when to start biologics, especially in the SI joint, they prescribed diclofenac (Voltaren), a powerful NSAID. Mind you, this was before the flare, though she was showing confusing signs to the rheumatologist that now in retrospect were likely simmering IBD (vague stomach pain, no real growth or weight gain over nearly a year).  The diclofenac completely rid her of pain, and two days after starting, she was having bloody bowel movements that increased to 30x a day. 

A hospital stay and work up for IBD found the Indeterminate Colitis (she flared *just* like me, and they really thought UC, but her "skip lesions" leans her to Crohn's; she had only colonic involvement).

We started Humira one week after her flare, and she was in symptom remission with formed stools in 2 days. It was amazing. They added methotrexate to help decrease antibodies, but we are slowly weaning that off. Newest literature shows an immunomodulator like MTX does help decrease antibodies with Remicade, but not Humira. However she gets cross overage from it for the arthritis, so it's a very slow wean.  She's decreased to 5mg from 10mg over about 8 months. So far so good. 

Last edited by rachelraven
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×