Joey is doing great! Pooping so well. Gaining weight, growing, doing well in school, making friends, playing soccer, talking, dancing, eating. We are so happy and so grateful for every single normal day. There isn’t a day that goes by that we don’t thank god for poop and pray for continued poop. We still watch the diet very very carefully and aim for 32 oz of h2o each day. That makes all the difference. he still sits on the potty a few times per day to (hopefully) poop and is getting better at telling us when he feels he needs to poop. He watches ‘Curious George’ episodes on the cell phone while he sits which helps him relax ans stay put while the poop comes. Sometimes it comes right away and sometimes it takes a few minutes. All and all happy, blessed, lucky!
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Hi I’ve been trying to find an online group or something that I can connect with families with children that have hirshsprungs. My almost three yr old daughter makayla had the pull through surgery at two weeks old. Thankfully we have only had two major constipation issues but the last one this past august was major where she didn’t poop at all for 9 days. She was admitted to the hospital for three days. She’s now on miralax an adult dosage one time a day. And we also give her suppositories since it appears she’s used to the miralax so she doesn’t really respond to it anymore. Thankfully she has started going at least once a day if not every other day. She sees her specialist again at the end of the month. Can u recomend any groups online that we can join to share our exprerience
There are some great resources out there. Facebook has at least 5 support groups, so if you are on fb do a search for ‘Hirschsprungs’ and for ‘HD”.
Yahoo group: http://groups.yahoo.com/neo/groups/Hirschsprungs_Support_Network/conversations/messages
Babycenter group: http://community.babycenter.com/groups/a6705975/hirschsprungs_disease_and_other_gi_disorders
+ various HD families that blog
All are very active and very welcoming.
Hope this helps!
I just wanted to say that I really enjoyed your web site, there’s really not that much material out there for people living with Hirschsprung’s Disease. I was born in 1989 (I’m 24 now), at that point there was much less knowledge on treating Hirschsprung’s. Initially, doctors didn’t know anything was wrong with me till they realized I wasn’t pooping after my birth. I was quickly diagnosed with toxic mega colon and rushed into the ICU. Originally I had a colostomy, and eventually I had a suave pull through operation and now live with about half my large intestines and less than half my colon. I was extremely fortunate that I lived because at the time the mortality rate in infants with Hirschsprung’s was about half. I also don’t require any regular help such as enemas. It has been unique living with the disease, although it’s all I’ve ever known of course. I try to avoid heavily fried foods, as they make me sick. I’ve never actually been constipated in my entire life, and I theorize it’s because of my unique anatomy. I also feel that I have an almost “6th sense” about what foods will make me sick. Just by smelling a food I can know that if I eat it, it will make me sick. I also struggle with constant acid reflux. No doctor can tell me if my acid reflux is related to the Hirschsprung’s but it has been a problem for me. I have managed to keep it relatively under control by taking daily PPI’s (nexium) but if I ever forget a dose I feel really sick for hours. The final way Hirschsprung’s has affected me is that I did not gain total control over my bowel movements until middle school. I regularly soiled myself until a relatively old age (around 12 or so). This of course was extremely embarrassing growing up. I have now learned to understand my own anatomy better and I know that if I feel the urge to use the restroom, I really don’t have much time before I absolutely must go to the bathroom.
THANK YOU for your comment. So glad to hear you are doing well! I also believe in that 6th sense and am sure that has helped you keep yourself well. Thank you for sharing your story. If you are on FB it would be nice to share your story there. The parents love hearing stories and asking for help from adullts living w/ HD.