Hi @katie215,
I'm so glad you've joined Connect on behalf of your daughter – managing a chronic condition is a tough journey, but you don’t have to do it alone. I’d like to start by connecting you with other members who have experience with Crohn’s — either themselves or a family member. Please meet @bonitav @mswanda @kaycigirl @judylindholm @gillyk14 @thankful @spiderwebb @jay_baruch @guener @joannem @chicoco @gillyk14 @kaycigirl, @tracyann @1228angela @amyk811 @jkellyjones @lisa1965.
You can view their messages in these discussions:
– Crohn's disease https://connect.mayoclinic.org/discussion/crohns-disease-2ed085/
– Diagnosed with Crohn's but having weird symptoms https://connect.mayoclinic.org/discussion/diagnosed-with-crohns-but-having-weird-symptoms/
I'd also sincerely encourage you to view the Gastroenterology & GI Surgery Page on Connect, https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/ where you will find many videos by Mayo Clinic experts, discussing IBD, recent news, medication and treatments.
Here are some that might be of interest to you:
– https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/anti-tnf-agents-for-crohns-disease-1/
Dr. Sunanda Kane, M.D., discusses the efficacy of anti-TNF agents for Crohn’s disease.
– https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/vedolizumab-safe-for-inflammatory-bowel-disease-1/
Dr. Edward Loftus, M.D., reviews a study in which researchers reported on the safety profile of vedolizumab (Entyvio)
– https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/insight-into-endoscopic-balloon-dilatation-for-crohns-disease-1/
Dr. Kenneth Schroeder M.D., talks about Endoscopic balloon dilatation (EBD) as a recognized treatment for symptomatic Crohn's strictures.
@katie215, what concerns does your daughter have about Systemic Anti TNF Therapy?
@kanaazpereira Replying to your question re daughter's specific concerns. The conflict between proposed Treatment for advanced Crohns and Whipples Disease with now neurological involvement are urgent and immediate. As she has been deemed a non candidate for bowel resection, and now moving to a more permanent cervical port for iv nutrition and medical delivery, we feel there is an urgent need for quality assessment, as in Mayo...as opposed to reliance on medicine in Croatia. We, her parents are Canadian but know Mayo fist hand with regard to our father in law many years ago. Sorry for long post and much appreciate your time an effort. K