Thanks for thinking of her. Bratcat is doing well. It's been 5 weeks tomorrow since her surgery. All her tests results came back good--no dysplasia, no cancer, definitely UC. She is adjusting to the ostomy.
Most days are good. It is still an ordeal to change her wafer. It took awhile to learn the right way to put it on so it doesn't leak (we had to go back to the hospital to see the ostomy nurse one morning when we were at the end of our ropes). She still finds it hard to take the wafer off but we have gotten good at putting the new one on. She has no problem emptying the bag.
about 2-3 days after the staples were taken out (at the 2 week checkup) alot of the pain from the incision (she had a full incision) eased. The first week or so she took some tylenol during the day and a darvocet at night. Now she rarely takes anything.
She still gets tired when she walks. It might be because she doesn't do it as much as she probably should (it is very hard to during the hot summer days). She comes to the supermarket with us and uses the electric scooter carts they have (her suggestion, not mine). She has been to a few friend's houses for parties. She stays for a few hours.
She does get light-headed. From what we have learned from the ostomies forum and j-pouch.org, it is probably dehydration. She is drinking almost 4 liters a day already. She may have to up her salt intake to help this. We're hoping to straighten this out so she can drive again (she is scheduled to take her road test in a few weeks), go back to work, and get ready for school.
She goes back to the doctor for a checkup this Friday. I am hoping we can find out more about step 2 surgery then. I know they do some sort of test to make sure the pouch is OK before surgery. We want to know how long they expect her to be in the hospital, how long will she need to recover, how long she will possibly be out of school.
Bratcat is adjusting well to this whole thing. Remember that she was in remission when she had her surgery so right now it isn't like this is so much better than what she was just before surgery. She still doesn't like the ostomy. The surgeon said she would be eligible for surgery in October. Originally she planned to have her next surgery right after Christmas and be out of school during January. On not so good days, she plans to have it in October (right after homecoming) and be out of school in November (come back just after Thanksgiving). I guess alot depends on what the surgeon says and how school is going (she has flared during the fall for the past 2 years so she really doesn't want to miss too much).
All in all, everything is good here. I kind of think of this as a 2-year process. The surgeries and then another year for the body to adjust in exchange for a lifetime without UC. The nice thing right now is that she is on no meds. She finished weaning off prednisone. She no longer looks like a chipmunk. Her face is beginning to clear up. We have to be grateful for the little steps that come. Some days it feels like 2 steps forward, 1 step back. But at least she is moving in the right direction.
--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare! 7/3/08-Step 1 j-pouch surgery