Looks like surgery it is

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wjack

Joined
Oct 1, 2015
Messages
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So it looked like L had been doing good since Octoberish. He got C-diff at the beginning of December (this is the 4th time in 18 months) and has been going down hill since. They scoped him on Tuesday 12/29 and admitted him. The Crohns is eating into the colon wall. He is scheduled for a colectomy and ileostomy tomorrow. Th plan on doing a loop and reversing it down the line. All the biologics have failed to put him into remission. I do hate this for him but want him to feel better and be pain free. Christmas was miserable with him crying in pain. Im worried about returning to school with the osotomy bag. Anyone with experience in all this?
 
I don't have experience with this either but am also sending hugs. It's so hard to see your child suffer. :( Your poor son, it's tough to see them deal with all of this. :ghug:

I'm going to tag SupportiveMom, her daughter recently had surgery and is doing very well. Hopefully, she will see the tag and respond.

I do know that I have read of other members who have had the same/similar surgery and feel so much better afterward.

:ghug:
 
So sorry that the past few months have been so rough for your son. I hope that the surgery goes well, and that it brings him a long-term remission. I'll be thinking of you both tomorrow.
 
I don't have any experience of children with stomas but, from my own experience, once your son has learnt to deal with the practical side of it and you have found a make and type of ileostomy bag that suits him, there is no real reason that anybody else need know about it. It would probably be advisable for somebody from the school to know - just in case he has any problems. (is there a school nurse?) Also, if he plays a rough or body contact sport, you might need to look at getting a hard cover for the stoma.

Penguin has a young daughter with a stoma.
 
Hi iv not got a child with one but i had a loop ileostomy for 11mths n had it reversed 11mths ago now. Wow thats gone quick. 😨 iv have been great since . Got my life back even change jobs in sept last year. It can be a bit tricky getting the hang of things for some for others its a doddle. Kids usualy get to grips with things quicker than us oldies lol. I hope all goes well n your son feels so much better for it. God bless you all 💕💕
 
Surgery went well yesterday. He has an epidural to control the pain. He hasn't gotten up to move yet. The doctors are all pleased. They saved about a foot of the colon. There was disease starting to penetrate to the outside of the intestines wall so it's good we went ahead with the surgery. He is handling everything well so far. Right now he just wants the "pee tube" out! Bless his heart!
 
Aw thats good that all went well. Heres to better times n health for your son. Please pass on our best wishes. Keep us updated. Hugs 💕
 
Everything is going ok. He has had his ups and downs. He has had trouble putting on weight, no appetite. Doctor has put him on marinol. He has dealt with the bag better than I thought he would. School and teachers have been wonderful. He was allowed to take his PE class that is required for high school online so he didn't have to deal with the locker room issue!! SO other than the "marijuana" he is medication free. Most of all he has been pain free for almost the entire year. He did have one blockage that landed him back in the hospital for a couple of days.

Thanks for checking !!
 

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