Discussions By Condition: Colon conditions

hirschsprung's disease

Posted In: Colon conditions 15 Replies
  • Posted By: Anonymous
  • February 28, 2007
  • 06:03 PM

My 5 year old daughter just had surgery a week ago for Hirschsprung's Disease. Does anyone know how long it will take for her to have to urge to have a bowel movement on her own? She seems to be very full of stool, as she is seeping very bad. Any suggestions?

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  • Sorry I dont have an answer to your ? But I have a ? My son started w/ severe constipation and impactation since I switched to formula @ 4mnths of age (had really watery BM's when BF). We have had to take him to doctors a few times to clean him out and than he was put on 1 capfull of Miralax. He eats high fiber and drinks plenty of water. He is now 22 montths old and if his bm is is harder than peanutbutter he cant seem to go and he still seems to strain w/ it being softer than that. They put a camera in him at 4mnths and found nothing. We are thinking of asking his docs to now do a biopsy. Doc has also said anus seems a little smaller than normal. They also checked reflex check @ anus and it seems normal. He does have a syndrome that usually has hearing loss but has none; only pigment discoloration and 2 diff. colored eyes. He was diagnosed w/ it @ 3 mnths; but hirshprung syndrome can be found in patients w/ this syndrome and no hearing loss. I was wondering how your daughter was finally diagnosed and what her symptoms were. If my son has it I would like to get this fixed before he gets older. I am so afraid that he will have a hard time in school if he has to be on medicine that makes him have accidents. Thankyou. And sorry I cant answer your question. But I deffintely would call her doc for any reason you might suspect that she isnt doing well.
    Anonymous 42,789 Replies Flag this Response
  • My 5 year old daughter just had surgery a week ago for Hirschsprung's Disease. Does anyone know how long it will take for her to have to urge to have a bowel movement on her own? She seems to be very full of stool, as she is seeping very bad. Any suggestions?Hi my daughter had/has hirschsprung disease, she was diagnosed at birth and still 3.5 years later suffers from really bad constipation and hard pooShe forst had her op when she was 7 weeks old and had her first poo the day later ( although it wasnt nrmal). She suffers badly now. i think giving her fresh orange will help her go and make her poo soft so it wont nbe too hard to passI hope she feels better soon. Feel free to email me on lizzigray1979@hotmail.com if you likeLx
    Anonymous 42,789 Replies Flag this Response
  • My son has Hirschsprung's Disease. He was diagnosed at 5 months with total colon Hirschsprung's. I guess it probably makes a difference if it is total colon or not. He is now 7 years old. We have to make him poop 3 times (this number is different for every child). He will not do it on his own because it is difficult and he doesn't like to. Often times if we hear his belly rumble we will know it is time for him to go. I guess I would suggest that you require her to go at certain intervals in the day rather than wait for her to have the urge. But again, our situations may be different if you are dealing with a smaller segment of the colon absent.
    Anonymous 42,789 Replies
    • August 22, 2007
    • 06:06 PM
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  • Hi, our baby boy has hirschsprung's disease he was diagonsed a few days after birth. At first we were giving him daily rectal washouts, but these soon became ineffective so he had to have an op to give him a colostomy. He had this until he was big enough to have surgery to fix the problem. 6 weeks later the duhamel (?) procedure was performed to fix the bad part of his bowel and close the colostomy, it was only 2/3 days after that he passed his first poo through his bottom - it was so exciting !! Unfortunately this didn't continue and his tummy continued to "balloon" up, after an xray we discovered that his bowls had actually formed a loop. Unfortunatly after an emergency operation he has the colosotmy again. But at least the bad part of his bowels are fixed. We are now waiting to undergo another operation where the stoma will be reversed and hopefully he will finally poo normally.
    Anonymous 42,789 Replies
    • October 27, 2007
    • 09:36 PM
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  • Was anyone in sheffields childrens hospital with there child for tresatment
    buttonmoon 1 Replies
    • January 30, 2008
    • 08:21 AM
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  • My son has been having a problem with constipation since he was about 4 months old. He was and is still exclusively breastfed. We tried starting solids at 6 months. He ate them for about 3 weeks and started refusing anything but breastmilk. All the while visits to the pediatrician were not helpful. They only suggested BabyLax and prune juice. Prune juice didn't work. Baby Lax is a temporary fix, and not a very nice one at that. He strains several times daily and nothing comes out. The whole area surrounding his rectum is really hard when he strains. Sometimes I can see it just inside his rectum, but he can't push it out. Today, he was so impacted, I gave him a BabyLax and some Karo syrup. He finally had a poop but it got stuck on the way out. His rectum started bleeding and he was crying out in pain. I got out what I could and put him in a tub of warm water. After about an hour later and a couple of warm tub soaks and several more bowel movements later he was done. I am not kidding when I say altogether the amount that came out was about the size of his arm. He is not small either he just turned 7 months and weighs 22 pounds. Breastfed babies are not supposed to be constipated. I know this is not normal. Does this sound like what any of you went through before your child was diagnosed?
    Anonymous 42,789 Replies
    • February 18, 2008
    • 06:42 AM
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  • Just Breast fed. My son was exclusively breast fed and did not have regular bowel movements either. I used gylcerine suppositories every 2 weeks or so to help the poop out. I also massaged his stomach. I as a breast feeding mom I tried to avoid binding foods. He is now five and still struggles with constipation. During potty training we had him sit on the potty each day until something came out. We stopped as he got older. We are going to beging the on the potty til you go because he just had a terrible vomiting and constipation episode and I took him to the emergency room. The only diagnoses was constipation. The treatment offered was Miralax.
    Anonymous 42,789 Replies Flag this Response
  • here is a quick version of what has happened with lachlanLachlans historyDidn’t pass meconium, didn’t feed properly and was vomiting a dark brown.His stomach was distended and they put a nasal tube in and got green fluid, it became a bright fluro green on day 2, he was then transferred to Royal Womens hospital, Randwick. His stomach became even more distended and then his bowel perforated, he had surgery and the perforation was repaired. He then was given a colostomy bag to let the bowel heal.He had 2 stomas. One which went into the bag and the other one is inactive which goes to his bottom.They attempted biopsy of the bowel to test for Hirschsprung’s disease but the lower inactive bowel was still of meconium.He started weekly flush outs from 7th February 2007.He was tested for Cystic Fibrosis 22nd February 2007 with a sweat test and the results were negative.He continued with the weekly flushes and on 6th march 2007 he had a biopsy which wasn’t successful so he had another one on the 13th March 2007which was accurate.He then had surgery on 4th April 2007 for a pull through to remove the affected part of bowel. About 5 cms was removed.1st May 2007 he started with dilations.He was to have closure of the colostomy on 16th July 2007, which was cancelled to lack of bed in the hospitalIt was rescheduled to 30th July 2007 and it went ahead31st July he did his first ***t from his bottom.then he started to throw up bile again, his stomach distended so he went back in for surgery Wednesday 1st August 2007he has a slight twist of the bowel and it stuck to the part where they did the repair and also had a blockage his last dilation was 6th may 2008 and he is doing great, if anyone would like to chat, just message me Emma
    Lachlansmom 2 Replies
    • August 23, 2008
    • 04:23 AM
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  • Hello Emma,I have a question for you. After the colostomy, the surgery that proceeds is the Pull-through where the colostomy is closed. And that is all right??? Did your son have problems after undergoing the pull-through, i.e. did he throw up bile after the pull-through? Please let me know. My son was diagnosed of Hirschsprung disease, 7 days after his birth, and colostomy is done. We are waiting for his weight to gain for the pull-through surgery.
    Anonymous 42,789 Replies
    • November 3, 2009
    • 10:24 AM
    • 0
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  • Hello Emma, I have a question for you. After the colostomy, the surgery that proceeds is the Pull-through where the colostomy is closed. And that is all right??? Did your son have problems after undergoing the pull-through, i.e. did he throw up bile after the pull-through? Please let me know. My son was diagnosed of Hirschsprung disease, 7 days after his birth, and colostomy is done. We are waiting for his weight to gain for the pull-through surgery. hi lachlan did have a problem after the closure, he started to throw up bile again, his surgeon was called in, she did a finger dilation and he *****d but she stayed around to wait for a poo, his stomach distended a bit and she ordered xrays asap. she noticed something so he went back in for surgery.he had a slight twist of the bowel and it stuck to the part where they did the repair from the original perforation at 2 days old. he is doing great, you wouldnt know he was ever sick or had surgery except that he has scars.
    Lachlansmom 2 Replies
    • November 4, 2009
    • 01:38 AM
    • 0
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  • Hello Emma,I have a question for you. After the colostomy, the surgery that proceeds is the Pull-through where the colostomy is closed. And that is all right??? Did your son have problems after undergoing the pull-through, i.e. did he throw up bile after the pull-through? Please let me know. My son was diagnosed of Hirschsprung disease, 7 days after his birth, and colostomy is done. We are waiting for his weight to gain for the pull-through surgery.my son had an colostomy at 3 week old then at 5 months old he had his pull though and the cut out right above the stoma and pulled it down and conected it to his rectom. after that he was fine till his scare tisseu had formed a block in his anis in witch i had to diolate him once a day to sretch the tisseu. now he is 4 and i am tryen to potty train him with is alot of work.
    Anonymous 42,789 Replies Flag this Response
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  • It will take a lot of work to potty train, but you can do it. My son is now six and has been diagnosed w/ Hirschspring's since birth. Nothing went right for us. When his colostomy was removed, he wasn't constipated, he couldn't stop pooping, so his little bottom stayed "fried", literally no skin on it for four years. He would still be in a diaper if t wasn't for the cecum button the Dr. put in when he was four years old. After they placed a button in his cecum for me to irrigate through daily to clean his bowels out, he has been fine!! Good luck. If you need any advice, post back, it is an everyday battle w/ kids who have Hirschpsrungs's I'll help all I can. I just left the Children's Hospital yesterday with a new cecum plug in tact!!
    Anonymous 42,789 Replies Flag this Response
  • My 5 year old daughter just had surgery a week ago for Hirschsprung's Disease. Does anyone know how long it will take for her to have to urge to have a bowel movement on her own? She seems to be very full of stool, as she is seeping very bad. Any suggestions?[/QUOTEI know my daughter is still struggling with "feeling" the urge. She may never "feel" the urge because those nerves are no longer there. She still seeps out on a daily basis and she is 7 years old now. She had to have 3 surgeries before she turned a year old. And still struggles to this very day.
    Anonymous 42,789 Replies
    • August 10, 2010
    • 04:13 AM
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  • My son was diagnosed with Hirschsprung's disease the day after his birth, he was in ICU for about a week, then we were discharged, with the condition we had to do the dilation & bowel wash out daily. 3 days at home & he started vomiting bile, the surgeon did an emergency colostomy and he had the stoma bag for about a month after the final surgery was performed. I am very thankful, my son has a 100% recovery and his bowel motions are normal. We only battled with bad nappy rash from the about a week after his surgery, but that has now cleared too. I just thank God for his total recovery.
    Anonymous 42,789 Replies
    • November 3, 2010
    • 03:43 AM
    • 0
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  • I have Hirschsprung's disease. I was diagnosed when I was very young. I am 13 now and I had the pull through procedure done when I was little. I still have the symptoms of Hirschsprung's and sometimes they are unbearable. Once I was going to the bathroom and My tummy started to hurt really bad and then it went away and then a few seconds later it came back and it kept doing that for like a half of an hour. But that was the only day that that had happened. I am a girl, I'm white and I don't have Down Syndrome, so having Hirschsprung's with me being a girl and white and not having Down Syndrome, Hirschsprung's for me is very very very rare. Ha ha I actually feel kinda special! :)
    Anonymous 42,789 Replies
    • February 3, 2011
    • 09:59 PM
    • 0
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