Niece diagnosed with UC

How's your niece doing?

Bad news Kaley is in emergency surgery right now. They had already started the remicade. They claim her bowel is torn. She just had another colonoscopy yesterday. Can't imagine how her bowel got torn! My sister is on way to hospital. Will let me know what's happening.

I'm very sorry to hear this. Thoughts and prayers go out to you niece has she has been been through so much already. I hope that when she is done with surgery that she gets some good pain medication and some relief!

This is awful what she is going through at such a young age. I know it happens sometimes, but how on earth did they perforate her colon?? Thats good that even with the emergency surgery she will be able to get a j pouch. For someone as young as she is, I believe that's the best way to go. She may have some depression after all this because it was such a traumatic experience. It may be a good idea for her to get some counseling afterwards. I know I was pretty down after my surgery and mine was elective. It's just such a shock to the body and mind going thru major surgery. Please let us know how she's doing.

I hope she's recovering well and I agree that counseling would probably do her a lot of good.

My guess the bowel was so ravaged that it was hard to NOT perforate it. I've heard of this happening.

I'm so sorry that she had to have emergency surgery but to be honest, with my daughter, we have struggled for years and part of me wishes she'd had surgery at the beginning. I'm not saying it's easier, but it sounds like her disease was so severe that nothing would have helped her and thankfully she was in a good hospital when she needed to be. As for the ostomy, obviously everyone responds to it differently. Counseling might be in order but she might surprise you with how well she deals with it. To be honest, I know a lot of children now who have gone through this and they tend to do so much better than adults. I think that's because they just bounce back physically and mentally. The only thing I would suggest is try to treat the ostomy as a normal and postitive thing, something which is going to make her well and which many people have. I'm guessing the hospital will have a support group for teens with IBD or ostomies - that might be a good place for her to get support. Counseling is great but only if there's a need. The ostomy nurse at our hospital told me that their approach is to not treat the children as sick. They teach them to be as independent with its care as possible and they have very young children learning to change it. They get them back into school and she tells them all about hockey players and athletes who have ostomies. Please keep us posted on your niece. Your sister might want to post on the ostomies section on HW or jpouch.org. There is a lot of support out there.
Here's the website of a girl who has a permanent ostomy from CD. She's had it from the time she was 12 or 13 and she's a model/actress:
http://uncoverostomy.org/blog/

Aunt Betty, we will be praying for your niece.  UC is difficult for people that are older.  I can't imagine what this is like for a 15 year old.  Our hearts are with your niece and your family.

 

Haven't talked to my sister today, but her mother face book page said she got out of bedd and sat up for a little while. The picture she posted of her is sad her arms look like toothpicks and she looks unhappy.

Will post, if I learn anything more.

I'm in Pa while Kaley and sister are in Orlando. Had to come to Pa so my kids could help with their Dad who has a bad clotting disease. Wanted to get him to a Philly teaching hospital. Wasn't happy with the Humana HMO
doctors. He was in the hospital 5 times in the last year. I'm ready to go back to work as a full time health advocate. I'm sure all of you are familiar with learning how to say and spell things you never wanted to know.

Oh no! I'm sorry to hear this. :( I'm also sorry to hear about the other problems you are facing. I will keep your niece, you, and your family in my prayers.

Kaley finally got her Arby's last night. No news yet this morning of how her body handled that, but I'm assuming no news is good news. She sure needs the food to put some weight back on and gain some strenght.

Kaley get 4 to 5 hours a day off the IV's, but her Mom complains she can't get a wheelchair to take her outside, because they are hard to get. Never heard of a hospital where it was hard to get  wheelchair and this is the Disney pavilion.

I'll post when I learn more.

Really bad news about Kaley, after maybe 2 good days, she was in pain and bloated again. After more tests and fooling around they come up with severe pancreai***. After I googled, I was even more concerned that's a lot more frightening than UC and I'm willing to bet Kayley has had it all along, because before the bowel removal they had been giving her med for organs shutting down and saying she had diabetes. I don't think her mother or my sister realize just how dangerous severe pancrea*** can be.

I am so sorry to hear about this.  We will be praying for you.

 

Apparently, some of the pain meds cause the pancreatitis. They didn't find any abcesses to drain. As of yesterday,she was allowed liquids. Is the poor kid ever going to eat again. Actually, she no longer wants to eat or drink. My sister brought her gum hoping to kick start her taste buds and she did chew it.