Hi, I'm new to the site and am I ever glad I have found it!
My question pertains to my 12 yr old daughter who had a total colectomy done in Feb of this year.
She was dx end of Aug 07 with Crohn's disease and after trying all the meds that were available to us (we are in Canada) she ended up with surgery in Feb. She had to have blood transfusion due to blood loss before and during surgery. The hospital stays were too many to count (that in itself makes it hard when she is the 2nd oldest of 5 kids!) The first 7mths went amazing. I had a happy, vibrant child back who had energy and didn't sleep 22 hours a day (literally). BUT now the rectal stump is bleeding. She is on 6MP as a maintenance drug and is also now taking a hydrocortisone enema. It doesn't appear to be working. She is still passing mucous and blood everyday and tonight she passed what looked like brown flakes (sorry for the tmi-don't know how else to explain it). She has also being experiencing abdominal pain, tiredness and just plain moodiness. When she is sick she is an angry little girl.
Wasn't the surgery supposed to slow this disease longer then 7mths? When they did the surgery they said that they left a bit of a stump but they figure that she will never be able to be reconnected because her disease is so bad. It affects her from the rectum all the way to her mouth, so why bother even leaving a stump?
She goes back in next month for an ileoscopy, colonscopy(why when there is no colon?), and an endoscopy where they will be taking biopsies again. These were planned before she started having symptoms again. Should I ask for the procedure to be move up sooner to get an idea of why she is flaring again? We are waiting the results of her blood test to see what is going on.
She also has significant bone density loss due to prolonged use of prednisone, so I really am hoping we don't have to go that route. She also suffered pancreatis after her surgery so is she at risk for that occurring again?
Sorry for all the questions but it's easier finding out information from people who have first hand experience.
Thanks for reading,
Mom to 5 special children
14yr old- GAD, PTSD, ODD, LD
12 yr old- Crohn's Disease-total Colectomy Feb 09, PTSD, Dystymia, JRA, Asthma
11 yr old- Globally Developmentally Delayed, Low Cognitive Functioning, PTSD
10 yr old(almost)- Epilepsy, Unspecified Social/Emotional Disorder, PTSD, LD
32mth old-Bright and Happy
Post Edited (Sami'sMom) : 10/13/2009 10:46:39 PM (GMT-6)