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Contact list for parents of children who have IBD and/or have had surgery:

If you would like to add your name to this contact list, please go here.

Name: Teralyn Fleming
Email: teralyn.fleming@fl.cslegal.com
Age: 31
Country: Tampa, Florida, USA
IBD: Hirschsprungs Disease
Surgery: Ileostomy
More Info: I am the mother of a 7yr old with hirschsprungs disease. doctors really don't know a lot about it so I'm kinda lost. My son wasn't diagonsed with this disease until he was four. He's had numerous problems, internal bleeding, blood transfusions and right now he's suffering with lymphoid hyperplasia. I'm not sure what that is, but I'm wondering if someone could give me a little more information about the disease like if it's fatal or the long term affects and prognosis.

Name: Brenda Toto
Email: toto1@optonline.net
Country: Milford, CT, USA
IBD: Son has UC
Surgery: Son has J Pouch
More Info: My son was 5 when first diagnosed with UC. After having disease for only 5 weeks and after ALL med's failed he had the first of 3 surgeries. It's been a rocky road, but now a little over 2 years post op he is doing pretty good. Please feel free to e-mail me with questions, concerns.
Name: Adrianna
Email: DGRAHAM945@gateway.net
IBD: Daughter has Hirschsprungs Disease
Surgery: Daughter has colostomy
Name: Gail Lees
Email: j.lees@ic24.net
Country: Northallerton, England
IBD: Son has Slow Transit Bowel and Deformities in Colon
Surgery: Son has ileostomy
More Info: My son is 4 years old and has had his ileostomy since April. He has Slow Transit bowel and deformities of his colon. He was diagnosed at two and I have no other contacts with anyone who has a child with similar problems to Andrew. However, since he had his ileostomy he has been a different child and it is wonderful to see. He also has a caecostomy which helps to keep his bowel clean. He has not had his colon removed (yet). I would love to be in touch with anyone who is at the stage we were at in January, trying to make a decision. If I can help someone else then it is worth it.
Name: Lisa
Email: NitaPepsi@aol.com
IBD: Son has Total Colonic Hirschsprung's Disease
Surgery: Son has ileostomy
More Info: I am the mother of a son with Total Colonic Hirschsprung's Disease. He is now 8 months and doing great with his ileostomy. At this time we are undecided if we are going to have a pullthrough surgery done. Update: When my son was 8 months old, I became a support person on this page. My son is now 2yrs old and we are so pleased with how things are going. We still have the ileostomy and we love it! It has saved his life since he was 5 weeks old. Feel free to write with any questions on ostomy tricks or suggestions. We have a lot of them.
Name: Susan
Email: srbbcb.balmas@prodigy.com
IBD: Daughter has UC
Surgery: Daughter has had j pouch surgery
More Info: If parent needs help in understanding what the docs are saying, needs help in making appropriate choices for their child or just an ear of a parent who has been through it with a child, I would be happy to be there for you. Our daughter was diagnosis at age 2 with UC. We did the usual, prednisone, azulfidine, later it was asacol, bleeding, pain, scary tests, describe to a doc where it hurts your baby when you don't even know how it feels, been there and done all that. Now we are facing dysplasia and removal of the colon (hey, a dramatic cure for this disease!) (Note: Claire has now had j pouch surgery all in one step - Shaz). Boy, is that a heavy decision to make for your child. Would be happy to help you with any part of this that you are experiencing I could.
Name: Connie Thompson
Email: connie@netxn.com
Surgery: 8 year old daughter has ileostomy
IBD: Neuronal Intestinal Dysplasia
More Info: I am the mother of an 8 year old with an ileostomy. The ileostomy has given my daughter a normal life. The ileostomy has given her health and kept her out of the hospital. For parents who are faced with the decision of choosing an ostomy, I can honestly say, the ostomy gave my daughter a life.