Parents of Ostomate Children Contact List - Page 1

25 May 2003
Name: Nina Sweeney
Email: nmsweeney@comcast.net
Age: 43
Country: Woodbridge, Virginia, USA
Surgery: Ileostomy
IBD: UC
More Info: Nikki is 5 and has a total colectomy with ileostomy. She has had ulcerative colitis since she was 2 1/2 years old.

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25 January 2003
Name: Damian Hejl/Tai
Email: fitzy2002@xtra.co.nz
Age: 17 months
Country: Auckland, New Zealand
MSN: fitzy2002@xtra.co.nz
Surgery: Ileostomy
IBD: Hirschsprungs Disease
More Info: My name is Janine Hejl, I am the mother of a seventeen month old son (Damian) who has Hirschsprungs Disease. I'm keen to hear from any other parents who have a child or children with this disease.

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17 January 2003

Name: Cindy
Email: RN4maknme@aol.com
Age: 34
Country: USA
IBD:Total Intestinal Hirschsprungs
Surgery: Ileostomy
More Info: My daughter, Makenzie, has short gut from Hirschsprungs disease--a permanent ostomy--is TPN dependent and is now on a waiting list for intestinal transplant at Childrens Hospital of Pittsburgh

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17 December 2002

Name: Michelle
Email: michelle.telemaque@spectrum-health.org
Age: 7
Country: Grand Rapids, Michigan, USA
IBD:UC
Surgery: J Pouch
More Info: My 5 year old was diagnosed with proctitis in Feb 2001. She was stable for about a year on the medcations and enemas. Then she stopped responding and was hospitalized for IV steroids. She did not respond to the steroids either, TPN started, remicaid tried and then we were transfered to Chicago. She then failed to respond to prograf, an immunosuppresant, and total colecetomy with ileostomy was done. A few months later, j-pouch and loop ileostomy, and a few months later take down procedure. Five and a half months out of surgery and off all meds, except 1/2 kaopectate/day. Kayleigh and I would love to help someone else through this situation, as it has changed our lives forever

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11 Mar 2002

Name: Amie Thomas
Email: thomasamie@aol.com
Age: 23
Country: Oak Hill, West Virginia, USA
IBD: Hirschsprungs Disease
Surgery: Colostomy
More Info: My son, Adrian, is 4 months old, he is the one with the colostomy.

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27 Feb 2002

Name: Marisa
Email: risa111399@aol.com
Age: 24
Country: LA, California, USA
IBD: Chronic Inflammatory Bowel Disease of Unknown Origin
Surgery: None
More Info: My daughter, who is now 16 months old, has had chronic fevers and high sed rates (highest being 133!) since she was about 8 months old. She has been hospitalized numerous times with no diagnosis for her fevers until this past December where we discover that her IBD panel showed positive markers. She then had a colonoscopy which the biopsy results concluded that she definitely has a chronic inflammatory bowel disease, but... they cannot determine what subtype. Currently, we are giving her flagyl and prednisone. We are to find out in 3-4 weeks if this will cause her to go in remission. Time will tell! It's sort of hard to treat when you can't identify what the subtype disease is! In the meantime, we have gone for more than 1 1/2 weeks without a high fever and without her getting toxic/crashing since July 2001! So far, I have not read or met anyone who has this similar problem with their child!

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9 Feb 2002

Name: Cody and Caleb Sims
Email: LSims@CS.com
Age: 3 & 4
Country: Lonoke, USA
IBD: Hirschsprungs Disease
Surgery: Colostomy
More Info: I am the parent of Cody and Caleb, they are both boys and has Hirschsprungs Disease. They both wore a colostomy one for 6 months and Cody for 9 months. They both have bowel problems still, Caleb has diarrhea and Cody has constipation me and my husband have to irrigate him once a day, he developed ecrolitis and CDF and stayed in the hospital for three days last week, I would like to talk to other parents who need a little support or need someone to talk to, I me and helped a couple last week at the hospital to empty a colostomy and just to talk about it. I think it is a big challenge and would love to talk to anyone who needs some support.

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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.

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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.

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Name: Adrianna
Email: DGRAHAM945@gateway.net
IBD: Daughter has Hirschsprungs Disease
Surgery: Daughter has colostomy

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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.

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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.

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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.

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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.

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