Supporting parents of kids with a J-pouch

[QueenGothel]

Thought I would throw this out there. I have a 4 year old diagnosed UC in 2011. It was uncontrollable with medication and she had a proctocolectomy, ileostomy, rectal pull through muscousectomy and J-pouch on April 17 2012. She had her takedown operation June 23rd and is doing very well. I want to let any parents who need support know that I am here and ready to listen.

 

[Terriernut]

:kiss: You are such a supportive parent! So glad you are here!

 

[QueenGothel]

Aw thanks. Sometimes I feel unable to help bc my DD had such an odd case. I hope I can help someone, at the same time I hope I don't bc I really don't want someone to go through what we did.

 

[QueenGothel]

Also to any Parents of J-poucher I created a closed group and if you would like to connect with other parents on Facebook the link is... We are 15 parents strong now.

http://www.facebook.com/groups/ParentOfJPouchers/

I am the created of this group and it is completely private and closed so no posts on your wall.

 

[2thFairy]

Excellent. I will keep this in mind for future if I come across someone with a J-poucher child.

Have you been to the J-Pouch Group at http://j-pouch.org ? You should post your link over there too. I don't visit that site very often, but it has been helpful to me. (I just like this forum much better! hahaha!)

 

[QueenGothel]

Yes I did post one there too. A couple of moms joined it and it has been a total god send for me bc they actually had more experience and time than I after takedown. I have it posted somewhere on here but I thought I was best here in the stoma sub forum. :thumleft: I wish there was a J-pouch sub forum bc it doesn't seem like we have a lot of activity with J-pouchers beyond the few of us. I hope more people join here that have a J-pouch bc I don't get much response from J-pouch site. I actually have more activity on the FB group but maybe bc we are all moms losing our minds worried waiting for the other shoe to drop.

P.S. I like this site better too!