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Looking for support

We have just found out that there is a very good chance my 13 year old niece will need to have her large intestine removed for uncontrolled colitis. Where can we look for support from other teens living with a stoma?


Community Answers
  • Kelly C (#purpleproject) moderator
    8 months ago

    Hi Sally, I wanted to personally respond with one very good resource that hasn’t been mentioned yet.

    Camp Oasis is a national camp for children living with IBD, whose camp staff/counselors also live with Crohn’s Disease & ulcerative colitis. It’s a great experience for many children.

    Consider taking a look! It is put on by the Crohn’s & Colitis Foundation every summer: http://www.crohnscolitisfoundation.org/get-involved/camp-oasis/

    Best,
    Kelly

  • thedancingcrohnie moderator
    8 months ago

    Hi Sally,

    I am so sorry to hear about your niece, and I think it is beautiful that you are being proactive and looking for support for her.

    Have you tried searching on Facebook? There are so many support groups out there and I’m sure there has to be one for teens. If not, I know there are support groups for those living with a stoma and through there I’m positive you or her can connect with someone near her age.

    Always dancing,
    Elizabeth (team member)

  • Pam.Kingsland moderator
    9 months ago

    I’m so sorry to hear this, Sally. Unfortunately our site does require members to be 18+, but I’m glad you’re here to learn more for your Niece. I’m hoping others can chime in with some support, but, in the meantime, I hope you find these articles to be helpful. We’re here for you and thinking of you and your niece. – Pam (team member)

    https://inflammatoryboweldisease.net/what-is-crohns-disease/children-and-teens/

    https://inflammatoryboweldisease.net/living/dear-newly-diagnosed-self/

    https://inflammatoryboweldisease.net/living/teenager-me/

    https://inflammatoryboweldisease.net/living/5-tips-coping-high-school/

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