Both my daughter and I were dx at our respective age 11's with IBD, so I *do* have a child with IBD, but not one of the youngest of the young.

That being said, briefly I was a member of a Facebook community where parents of kids with IBD gathered to talk... one of the moderators used to be on this site, because her daughter was like yours, and did get a J pouch, though it failed, and she now has an end ileo. I only left the community, because it became a place I "worried" about, and checked too frequently. I had to distance myself, because reading all of the stories also started impacting me in that I began worrying about my daughter's "what ifs" more than enjoying the "what nows" that were happening with her, which is that at this point, Humira put her in remission for the time being. So I had to get away from it so I could be in the present, and not worry about "the future." Some of the poor kids on there are awfully ill.

This is the link to the community:

Parents Of Children With Crohn's Or Colitis
https://www.facebook.com/groups/63580908645/

I have a feeling, while this community *here J-pouch.org is a very good one, and everyone is and will be very supportive, the scale tips more towards it being one addressing more of the problems in the adult community facing IBD and J pouch surgery than children, especially the youngest of the young (who seem to be the hardest to control, IMO).

There's a member on here whose daughter had j pouch surgery at 6 years old (I think it was 6) and last I read she was doing really well with it. That was a while ago....I haven't seen any posts recently from that member.

Shaggy08,

Glad to have you on the site. Wish you didn't have to be here - it stinks when our kids have UC, doesn't it? I remember praying quite a bit when my daughter was first diagnosed.

mgmt10's mention was my daughter, and she was diagnosed at age 6 1/2. She had j-pouch surgery right before her 8th birthday. Children's Mercy GI here in Kansas City told us the youngest UC patient they have had was 3 months old - still so hard to believe. Our Primary Care doc assured us initially that (even though I had UC dx at 12 years) she was too young for a UC diagnosis.

Having had UC for 25 years prior to my surgery (came out of nowhere, seemingly), and watching my daughter have surgery at ages 7-8, all I can say is, "Wow." She has done SO well with it. Amazing to see her heal up like she did. Even with an acute, chronic pouchitis diagnosis a year ago, she is managing well with just Prilosec and sulfasalazine. She goes to the bathroom less than I do, and has little concern with much of anything about it. You would never know she was that sick and that she has a j-pouch.

I will send you a Private Message with contact information - my wife or I would be happy to talk with you anytime.

As for the Facebook group rachelraven was a part of, I was also a member for a short time. I'm not sure I could recommend talking with the former moderator of the group. I had to leave because she has been so wounded by everything she and her daughter have been through - that she seems to want to project that on everyone else who has a kid with a j-pouch (translation --> she was telling people that every pouch would definitely fail). I think connecting with the group and some of the people there is a great idea.

Steve

Agreed that she is indeed very wounded by what her daughter went through. I can't really blame her; I mean, when my dtr was dx, I was so angry with God for striking my kid with it all, too (wasn't I enough?). But she (this mom) isn't the one to speak with about success stories, and there ARE success stories.

Totally agree. Not blaming her in the least - I agree it is totally understandable and I was/am empathetic for sure.