Hi,
I know that sounds like a pretty moronic question, b/c UC is so variable. This website forum is a godsend, it seems to have the most activity and commentaries on this disease, which helps so much!
My daughter's story:
She is autistic and non-verbal, diagnosed with UC in Nov. '08. Being non-verbal it is hard for us to know exactly what's going on. She has fulminant ulcerative colitis and the first time she flared was in the hospital for a month (prior we thought she maybe had an anal fissure and her PCP prescribed Miralax, which sent her into a horrible flare). The GI drs. tried steroids first, sulfasalizine, but she kept flaring and losing blood. We tried Remicade and it took a good two weeks before we saw any response. All along the doctors say surgery might be the better option given the severity of her disease. This is a kid who ripped out her iv's in the hospital, won't even keep a bandaid on, how the heck is she going to keep an ostomy bag on, plus it's permanent (the pull through is scary b/c since her colitis came on she isn't 100% bowel trained.)
So now her Remicade has been increased from 5mg/kg to 10....because she is flaring again and becomes anemic. This is a horrible disease and we thought we'd see how she does, but after a full year I wonder if surgery would be her better option instead of pumping her full of these antibodies that have a slight cancer risk, suppress her immune system and may or may not work. However, surgery and an ostomy sound so
difficult, we don't know with her sensory issues she could tolerate a bag. The poor thing doesn't know that she can't eat everything she wants, and we are still trying to figure out what foods we should avoid (those that cause high stool output, we know, during a flare).
I have been reading all your posts eagerlly looking for what people find triggers flares, any tips, etc.
She has since started VSL#3 and a vitamin supplement that has a non-gi irritating form of elemental iron.
Her other meds are Imuran along with the Remicade. You guessed it is hard to put her through the iv infusions, but she has gotten somewhat accustomed to it (we have to hold her down, she's bigger than me).
We have always done everything we can for her, but we feel so defeated by this disease!
