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I was hoping for some advice from parents whose kids have had jpouch surgery, my 9 year old daughter was diagnosed with IBD at 16 months and had a colectomy at 2, she has been living a healthy life with an ileostomy since with no medications.  We are considering the surgery now that she’s getting older but I would like to hear others experiences and how they coped. Any information will be  appreciated.

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A colectomy at age 2??? Wow she was always resilient!!!! Since she has you for support, I think she will be fine! Quite a few people here at J-pouches in their childhood and a lot of them did fine, I think each case is different though, I would seek advice from the gastro and colon surgeon if you do not get any other answers.  

I would definitely suggest to put her in the disability program at school: that way she has extra time to finish homework, extra time for tests, water breaks, and bathroom breaks. A lot of people here were in that program, including myself. I opted out of it in college but that was a mistake, definitely stay in that program for as long as possible.

Thank you so much for your replies. Yes she has been through so much and was so unwell that I’m scared to put her through anything like that again, that’s why I want to be sure it will be worth it but there is so little information, even the surgeons can tell me too much as they themselves have not performed the surgery much and will need an adult surgeon to guide them. Although she has a colostomy bag she leads a completely normal life but I am aware that the older she gets the more self construct she will become.

@Melsp34 posted:

Thank you so much for your replies. Yes she has been through so much and was so unwell that I’m scared to put her through anything like that again, that’s why I want to be sure it will be worth it but there is so little information, even the surgeons can tell me too much as they themselves have not performed the surgery much and will need an adult surgeon to guide them. Although she has a colostomy bag she leads a completely normal life but I am aware that the older she gets the more self construct she will become.

Yeah, I believe she can make it through anything

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