Hi everyone, I'm a male in my twenties who was diagnosed with Hirschsprungs as an infant. After having surgery pre-1 year, my incontinence was pretty bad and soiling was a very common occurrence until around my preteens. I underwent biofeedback therapy at that time and it actually worked really well for me: I was eventually able to control my symptoms and now I live pretty much like a normal young adult who has to use the bathroom more often than average, but nothing too bad.
Lately, I've been doing some introspection on my childhood, and although I think I had it easy compared to many people who live with HD and was relatively successful by most metrics (I had friends, did well in school, was able to live "normally"), I think living with incontinence actually impacted my psyche in ways that you wouldn't be able to tell just looking at me, namely in my character.
To put it simply, I developed a habit of being dishonest. Growing up, I never told anyone about my condition because I wanted to fit in and I didn't think my friends would understand. When soiling incidents occurred, I just tried to deal with it as best as I could in school and just try to act like nothing had happened, because of course, that was "normal" and how my friends acted. Often, after having gone to the bathroom recently, I needed to go again soon after, but I was too embarrassed to be seen as different from the class and soiling occurred. As I grew older, I often also hid the fact that these incidents occurred from my parents because they didn't understand why these events kept occurring and I couldn't articulate the reason to them. Thus, hiding myself became really matter of fact to me, and I think some part of me lost that moral urge to need to tell the truth. I started to lie to my friends to get their attention or make myself seem more interesting. Those lies eventually became worse as I got older, and persisted even when my condition got better. It wasn't until recently in my late teens that I had to deal with the ramifications of being dishonest to myself and the esteem issues that those lies were coming from.
I was just wondering if other people with HD could relate, or if they also had other challenges that might have manifested with HD. I would love to hear your experiences, as there aren't a lot of us, and it might be a great thing for parents dealing with HD in their kids to keep in mind.
look up what it is, im so tired of explaining it to people lmao
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.
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?
----------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.
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
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.
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?
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?
Hey all,
My two year old son had surgery to remove a short segment of colon. The surgeon was able to do a transanal pull through successfully. After a month, the surgery site was confirmed to be excellent and my son was administered botox to help with a tight internal sphincter.
Due to his condition, my son also has motility issues. The colorectal team asks for senna to be given, as this will help increase his motility as well as keep bulk to his stool. We are aiming for 1-2 big poops per day.
Currently, and throughout his life, he has had a whole range of poops. Large, small, teen-tiny, hard, soft, watery, etc... However, when we try senna, even at a low dose, my son experiences very bad cramping. We tried for five days, ranging from .5 squares to 1.75 squares. Either way, he had stomach pains throughout the day.
When these pains occurred, we were able to give him relief through irrigating the stool. Even with the senna, he was not stooling well - especially since we had to irrigate to control the pain.
The colorectal team really wants us to keep trying because osmatic laxitives, miralax, will not help his issue. The team suggests we do an irrigation prior to each dose of senna so that he wont cramp during the day. This will be the next thing we try.
I am reaching out to know if anyone has any other tips/tricks or advice for my son. Any help is appreciated. Thank you.
Hello, my son was born last week with DS and AV canal heart defect and transferred to a Childrens Hospital NICU a couple days in because of not having bowel movements. I am now being told he has Hirschsprungs and needs surgery. I can certainly google but are there any redditors that have gone through this with their child and offer some diagnosis and recovery timelines from their DS with Hirschsprungs experience? I feel like im stuck in a loop in NICU with mo end in sight.
Anyone else here been diagnosed with Hirschsprung's disease? I was diagnosed with Hirschsprung's at birth and then just recently diagnosed with small and large bowel Crohn’s. Just wondering if Crohn’s is common with it.
I have suspected EDS in my daughters for a long time. My older one has had horrendous constipation since age 2. She underwent anorectal manometry today and while they did not give me the full results, she has a severe loss of sensation in the rectum and mega colon. I am wondering if any zebras on here experienced this manifestation.
Wouldn't this be a gain of function mutation leading to over expression of the receptor tyrosine kinase because it's a proto oncogene? Or is the loss of function the cause of the decreased migration of neuroblast cells to the rectum? Didn't know proto oncogenes could be affected by inactivation, or am I just wrong here
My girlfriend had Hirschsprung’s disease as a baby. Over the past few years she has had abdominal pain in the area she had surgery. She said the pain returned a few years ago during a summer while exercising a lot and had come and gone since. Lately she’s been experiencing it a lot. Has any doctor out here on Reddit dealt with a patient who had something like this? Hirschsprung’s os very rare and there isn’t much written on it when it comes to complications years/decades after surgery.
Her age: 32 Weight: approx 120lbs Height: 5’6 Non-smoker No medications
Still need rectal scope exam, rectal biopsy, colonic transit study and Defecography. Guessing 2 more months of tests then surgery.
An ostomy is a very possible solution to Hirschsprung’s disease, that or removing the bad bowel and connecting the good to the rectum.
Essentially my parasite back in 2016 aggregated my condition making it more prominent than it had ever been.
What’s ironic is I had always suffered with long bathroom visits in my teens and NEVER knew what was happening I doubt I’d have ever figured out if I never got my parasite.
Basically these 2 and a half years I’ve lost of my life can potentially mean I’m allowing myself a full life in the future given a means of correct treatment. “Surgery”
I am a Man was born with a condition know as Hirschsprung disease, short answer you shit yourself, a lot. See when you're born without any nerve endings in you colon, you have little control over your bowels movements. This can lead to some humors and embarrassing scenarios. The gastroenterologist surgeon that did my operation to remove apart of my colon that was infected apparently from other doctors told me, did such a crude job it's one of the worst surgeries they ever seen to the other cases of Hirschsprung disease treatments. Consequently this did not get rid of all the disease, so now I'm left with this great big whopping scare that looks like an arse, no joke. And because of that I have always been very self conscious of my body and didn't have any idea for the longest time how to explain or express myself. Now that I am older and have more understanding why they way I was and no longer care what people think. I know it's not my fault. I thought I'd share my experiences because it feel its an interesting story. It might even possibly help someone out there with the same condition.
Growing up I couldn't enjoy normal things that children typically take for granted like hanging out with friends, birthday parties or sleep overs. Couple that with a terrible stammer and shitting uncontrollably my social skills were not the best as you can imagine. These thing I couldn't enjoy and to this day I prefer to be by myself and chose not to have friends. Generally I was an unpleasant kid to be around because and even to this day I am in constant discomfort and pain. Though at the time I didn't know any better, you see the pain and discomfort was all I knew. This was normal for me and I use to believe the reason why I was always angry and misbehaving was because I was just an ungrateful child and a bad egg. A no good kid.
Now school was an interesting time especially when it comes to PE which I hate with a passion. During my middle school years the PE teaches had no chill when it came to my condition and didn't care one bit for it, even when my parents would give them doctors certificates showing the problem,
but they would ignored it. I was instead accused of making things up. So I was forced to participate in sports and exercise, even though irritated my bowel. You know how humiliating that was being forced to run laps on the oval or doing hurdles while crap was running down your legs? It was utterly humiliating and the amount of mocker from other studen
hirschsprung is associated with RET gene mutation, but FA doesn’t list it in MEN 2A/B for some reason! does that mean they aren’t related?
My son had his colon and some small intestine removed at 2 weeks old, at 5.5 weeks old he had too much scar tissue and it created a blockage so he had his ileostomy placed on the opposite side of his abdomen. A j-pouch was left in the possible chance of reconnect at some point in life. In August he had some mucus (I know this part is normal) and a surgical staple come out of his rectum... the surgical staple obviously freaked me out but the doctor said it can happen on occasion. However, two days ago, ANOTHER surgical staple came out of his rectum... is this something that happens regularly? Should I be worried that something isn’t held down with staples as much now? I guess I’m just not sure why surgical staples are falling out and roaming around his body and being dispelled out of his rectum. Any ideas or help would be awesome to ease my mind.
Thank you!
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?
Doctor still wants transit study, Defecography and rectal biopsy to determine if I do I fact have Hirschsprung’s disease.
My guess is 2 more months of hell then a course of treatment.
“Surgery”
