Very Early Onset IBD (VEOIBD) for parents with children under 9 years old
The challenges facing parents with younger children can be very different to those with teenagers: weaning, potty training, nursery, starting school, medication and how to explain the condition can all be daunting. Sharing your thoughts, questions and tips with other parents in a similar situation can be beneficial and reassuring.
> get in touch if you are a parent of a child under 9, diagnosed with any form of inflammatory bowel disease (IBD)
Stoma and J-Pouch for parents and children/teenagers
Many children with Crohn’s, colitis and IBDU will never need surgery. However, if you do it can be daunting and a bit scary. Chatting to someone your own age who understands how you feel can be both positive and helpful.
If you are a young CICRA member who has had surgery and would like to join a group to chat, share experiences and support each other by e-mail, please get in touch. Your experiences could provide valuable reassurance and support to others.
Please send a short paragraph about yourself and your interests that can be included on the group. We will only ever use your first name and CICRA membership number. Everyone taking part will be a member of CICRA.
The group will be run in a very similar way to our successful E-Pals scheme, the paragraph about yourself will be included on a list with other children taking part, you choose the children you would like to write to, we then forward them your e-mail address and ask them to get in touch.
We hope our surgery, stoma & j-pouch group will offer informal emotional and practical support through surgery and beyond.
If you would like to join-in or have any questions about the group, please do not hesitate to get in touch.
> Please also get in touch if you are a parent of a child with a stoma or J-pouch or your child is facing surgery and you want to know more, or speak to another parent whose child has had surgery and a stoma or j-pouch fitted.
E-Pals, for children and teenagers with Crohn’s, colitis or IBDU (age 8-22 years)
We are in the process of updating our procedures in line with safeguarding best practice, and we are trialling a new approach - where a young person and one of their parents or carers has a video call with our family support worker, Laura, before we put you in touch with other E-Pals. This is a way of letting you know the different ways that Laura can help as well as verifying that everyone is who they say they are. (We will be asking for a video call with existing E-Pals over the next few months, to ensure everyone on the scheme has been through an appropriate process, to reassure all members we take our safeguarding responsibilities very seriously.)
You are still welcome to join E-Pals, just contact Laura and she will let you know how to go about it.
You must be a member of CICRA to be an E-Pal.
> read more about current E-Pals on our website, including how to sign up
Join or find out more
If you would like to join or find out more about our email support groups, please contact Jayne on email@example.com or call the office on 020 8949 6209contact us