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Rena's10

Hello, I am a new member and the mother of a 10 year old daughter who was diagnosed with IBD 8/2015. She failed oral meds, remicade and by 11/2015 she had 3 blood transfusions, 30 lb weight loss, TPN and very ill despite 3 months of prednisone and IV steroids; she required a colectomy with ileostomy.

She has done well since her surgery, she has gained 18 lbs and is getting stronger everyday. Scheduled for a J-Pouch 2/2016 and I don't even know what questions to ask or what to expect. Any advice would be appreciated.

Thank you in advance.

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deweyjMember

hello and welcome!

first please note that this forum tends to self populate with people who encounter challenges, not all jpouchers have these challenges. consequently, you have happened upon a potentially wonderful resource if indeed your daughter encounters surprises along her jpouch journey.

I would be sure that the surgeon has a good relationship with the GI, hopefully an IBD expert that is following your daughter. I would also ask the surgeon how many jpouches she/he has done for children. apparently there is some additional thinking that should be applied regarding future growth etc. a local friend who is 17 mother explained that twist to me recently.

you want to discuss limitations post surgically, length of expected recovery. will the surgery be open or laparoscopic? this is a two step surgery? so this February will be takedown - aka reconnection?

good luck to you and your daughter. I am glad to hear that she has been gaining weight and recovering between surgeries well.

1/20/162:24 PM

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