I have it and there are only a few million people who have it and idk anyone who does, i was wondering if i could find anyone like me so i can feel, normal?
My 3 month old son was diagnosed with Hirschsprung's Disease at 1 week old. We had to do bowel washouts with him but after some time he developed Hirschsprung’s Associated Enterocolotis. An Ilestomy was put in place when he was 2 months old and biopsies were taken and it shows that he has long-segmented disease.
He is due to have pull-through surgery at 6 months of age.
I have asked his nurses and surgeons what his life looks like in the future but the answer I'm usually met with is it is different for every person. Some people have no issues and some people have issues.
I want to best support my son and hearing some stories and experiences of others may help me to navigate this journey with him throughout his life better should anything arise.
I know of incontinence potentially being an issue for him considering they are planning to remove 70% of the bowel and I know how nasty some kids can be. Even some help to navigate his mental health should he be bullied or anything for such things. Are there things you wish your parents did or did better? What would have helped you with your issues?
A place for members of r/Hirschsprungs to chat with each other
Yes, folks, I realized my spelling mistake. Let's try this again!
This is a community created for those who have Hirschsprung's Disease, their family and friends, and those who are interested in learning more about the rare condition. Feel free to discuss all things related to this condition.
It's about time there is a reddit community made to raise awareness and encourage discussion!
Feel free to post tips, stories, questions, concerns, supportive/inspirational posts, or anything else related to this disease.
More posts coming soon.
Okay so basically I have had chronic constipation since I was a baby. My mum said it started happening days after I was born. Unfortunately due to the incompetent medical system here, I’ve never had proper investigative tests. I’ve never seen a GI apart from when I went to the hospital once and a GI looked at my butt and then told me to get a rectoscopy. I was young and stupid at the time so I didn’t even bother going back for the rectoscopy. Lately I have been taking laxatives every day. Without laxatives, I can do tiny BMs but not nearly enough to empty myself.
No dietary choices really help significantly (although some make it worse) including going gluten free and grain free. I’ve been vegetarian for 8-9 years and currently eat meat. Vegetarianism or veganism didn’t help. I also don’t eat much because of this problem. Removing processed foods also doesn’t help much.
I want to ask for a rectal biopsy but knowing the medical system here they will look at me like I’m crazy beyond belief and possibly refuse to do it.
In my experience doctors here do not give a s*** unless you are literally dying from impacted colon and even then they would probably just save you from dying and put you on your merry way.
Any tips how to convince doctors to give me a rectal biopsy?
Hi,
39M from the UK, 6 foot, 100kg.
I've tried googling, but not really finding much. Does anyone know of there is any link between having Hirschsprung's Disease and an increased risk of developing Bowel Cancer?
Thanks.
----------Birth----------
---All of this is true for short segment to total colonic---
-No passing of meconium within the first 24 hours after birth. After 24 hours, if it passes, doctors should look to see why it took longer than that time frame. Even with meconium passing before 48 hours, Hirschsprungs should not be ruled out. Our daughter has total colonic+ and passed meconium around 36 hours after birth. Lucky for us, we didn't have to fight to have her screened for Hirschsprungs since I also have total colonic. If you don't have a family history of Hirschsprungs, or your child does not have other genetic conditions such as down syndrome or congenital heart disease, ask about looking into Hirschsprungs specifically.
-Feeding problems with spit up mixed with green/yellow/brown bile. This is almost always indicative of Hirschsprungs. If this plus the late or no meconium happens, I would recommend you demand they look into the possibility of Hirschsprungs.
-If for some dumb reason the hospital let's you go home with both of those problem, stomach bloating, severe weight loss and dehydration should be the point where you return to the hospital (or a different hospital) and voice your concerns. Not only is that an extreme medical emergency, that is almost guaranteed Hirschsprungs.
----------One month to adulthood----------
---specifically short to sometimes long segment---
-Frequent constipation
-Stomach distension
-Gas
-Failure to thrive
It is not uncommon for Hirschsprungs cases to go undiagnosed until a person is older. Since the disease itself is relatively rare, it might fly under the radar for communities and hospitals that might not have access to specialized training or trained pediatric gastroenterologists/Surgeons. Always remember that if you have concerns about anything, or want certain tests done, that you are the parent and have the right to ask for the care you think your child should get.
I won't lie, I was fucking scared. Everything goes through your mind when you have a newborn in NICU and can't take her home. I thought I did something and even though nurses and doctors said there's nothing I have done, I still put the blame on myself. When they told me she had TCHD, I just couldn't believe it. We all ask ourselves when shit like this happens, why us? My answer is there would be no better parent for her except me. She is perfect, perfect for me. My daughter. She is 4 months now and she has an ileostomy. The bag changes at first were so hard. It was painful for her to have them removed, until we found an adhesive remover. I am pretty professional now when it comes to applying her bag and having them last 3 days. They could last longer but I never go past 3 days. Her pull through surgery is scheduled for when she is 2 years. Potty training time. I'll keep you guys updated as we go along. I appreciate you all for reading.
Hi there
My son is 1 year old and at 11 months was rushed to hospital where it was found he had a completely impacted bowel and entereocolitis. After treating this he was later diagnosed with hirschsprung's disease via a bowel biopsy.
We're currently waiting on a date for surgery but my question is once the surgery is done will he be able to lead a normal life? The doctors have given me the impression that the surgery will fix everything but I don't know myself and whenever you search the disease you just get worst case scenarios
Thanks for listening and I think what you guys do is amazing
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If anyone has this or has been through this what can I expect? She had a stoma surgery today, the surgeon said all of her colon and some of her small bowel was affected. Im scared. What options are out there?
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