Please think happy thoughts...

Sami is going in tomorrow for colonscopy, ileoscopy, and endoscopy and for more biopsies. They will be checking on the progression of her disease and to see if she will be able to keep her rectal stump. Also to check her pancreas as something is up with it and is giving her extreme pain. Because of the issues she has been having with the rectal stump, there is a thought that it may have to be removed. Please keep her in your thoughts as the thought of removing her stump has her extremely scared. She has been hoping against hope that some day she would be able to have a reconnection, even though we were told the chances of that were very, very, slim. It makes me very sad that my 12yr old already has to go through what she has and may have to have her ileostomy for life.

Thank you.

I will certainly keep her in my thoughts and prayers. She is so young to be going through all of this. Happy thoughts are on the way!

Thank you everyone =)

I was wrong, the one scope was not a colonoscopy, it was a flexible sigmoidoscopy. Makes sense now, as she doesn't have a colon. That scope showed the stump is really badly diseased. She is going to go back on a cortienema(sp?). Her dr said that if it works and she has to be on it all the time, then so be it. It is better than losing the stump. But as it stands, she will not be able to have a reconnection as she will always have problems if it were done.

The endoscopy didn't show any worsening of the disease, but the dr said we will have to wait for the biopsy results for confirmation as it isn't always visual.

Her stoma is narrowing (stricturing?) so she has to go back to the surgeon who did the ileostomy for a consult.

The pain she is having is probably not all just from the pancreas, but also deferred pain from the diseased stump.

Today's results could have been better, but all in all it could be alot worse.

Take each day as it is and be thankful that I still have my daughter. There are people in alot worse situations.

/

if they cant reconnect her, why do they want to keep the stump?

Just wanted to know that I'm thinking about Sammi.

I wonder why they want to wait for her to stop growing b4 they tried to reconnect her?
I met a few children with j-pouches when I volunteered at the CCFA camp. One little girl was 3 when hers was done......?
She now has totally normal bms...according to her.

I really hope the enemas work for her.
But even if they don't, feeling good with a permanent ileostomy is better than hanging on to a sick stump and still feeling miserable.
Even if that is hard to see that right now.

I honestly don't even know what a J pouch is? Is that what they mean when they talk about reconnection?

I get frustrated sometimes because I don't know what to ask all the time, or I get confused with all the information that gets thrown at me. I really need to go to one of the parent support groups here. There I would be probably be able to sort out the information better and find out what I should be asking. I always ask questions but then I find out that I should be asking more or haven't asked the right ones, like what a J pouch is lol Someday I will be more literate in all of this.

I read the posts here and find out stuff I didn't even know. This site is being really helpful. Thank you.

Hi...my heart so goes out to you. Have you thought of making an appointment with your family doctor just for the purpose of sitting down and talking? This is part of their job and they will likely spend a lot more time with you than the specialists sometimes will. I also think that your family doc may explain things in a more understandable manner.

I think that the parent support group is a great idea.