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Surgery? Am I being an overreactive mom?


Mon, December 26, 2016 6:26 PM

Hi! I'm mom to a 13 year old with UC, diagnosed last year in October (2015), has yet to be in full remission...  They've had him on Remicade now since April, and we went from 6.5mg/kg of Remicade every 8 weeks to 10 mg/kg of Remicade every 4 weeks.  He is also taking Methotrexate once weekly as well as Cortifoam, Folic Acid, and Nexium.  I am really intimidated at the ever-elevating dosage of medication (specifically Remicade and ESPECIALLY considering it's possible side effects).  I have started inquiring about the surgery, and the doctors seem to be against it.  I am having a hard time accepting the increased medication dosages.  We are having a "sit down" next week to discuss my "concerns".  He has missed more than 20 days now THIS school year because of the flares.  I really feel as though I am at wits end.  Can anyone weigh in here?  This is my baby (albeit he is bigger than me), I am tired of seeing him suffer.  

FPO mamahrs
Joined Dec 26, 2016

Mon, December 26, 2016 6:56 PM

 Reply posted for mamahrs.

I would want to exhaust absolutely every option before considering surgery.  They are making a lo t of advances in biologic medicines these days.  If you choose the surgery, get the j pouch option.  Having a colostomy is awful, and not something a teen wants to be permanently stuck with.  It's a life changer.

FPO charbs
Joined Oct 31, 2016

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