My daughter was diagnosed with Ulcerative Colitis in August 2014.
This seemed to come out of no where.
We thought she had a stomach bug, or food poisoning that turned into bloody diarrhea in days. At the hospital they admitted her due to her blood loss and did a scope. The doctor showed us the pictures of the ulcers but I was too shocked to comprehend the magnitude of this disease. During her time in hospital they tried all the usual meds, nothing was working and she lost so much blood that she needed a transfusion. There were days when I didn’t think she would make it. She lost so much weight and she was tiny to begin with. She was hospitalized for about a month before they began remicade which has brought the inflammation down. She receives transfusions every eight weeks and began imuran. She is still so sick, and nauseous all the time. I live in constant fear of another severe flare. I don’t sleep, check my phone at work about 100 times a day and I find myself constantly checking in to see how she is feeling. I know this has to become our new “normal” but I’m terrified of what the future holds for her (she is 21) and of losing her. She never ever complains or bemoans her situation and I’m the one freaking out.
I don’t want to stress her out and I’m trying to be as brave as she is but its so difficult.
I have become super sensitive to all her aspects of daily living. I know how many times she goes to the washroom, what she has eaten, the colour of her skin one day vs the next. I don’t know how to just “deal” with this and I just want her to be okay. It feels like all our lives have changed forever with this diagnosis.
written by “Scared Mom” Joanne
(about Joanne: My 21 year old daughter was diagnosed with uc four months ago. She is one of the strongest, bravest young women I know. She is my hero and I only wish I had her strength and grace in the face of this illness.)