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Hello,
My son is 1 month old. He was diagnosed with Hirschsprung's at the age of 3 weeks old. I would really like support from parents with children with Hirschsprung's, and people who have Hirschsprung's. I would like to know what to expect in the future, and how hard is it to overcome Hirschsprung's. I really would like to know anything!
Cancer Surgery Crohn's disease Hirschsprung's disease Sudden cardiac arrest Acid reflux Constipation Pain Preeclampsia
http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/index.h tm
This is a pretty good site to learn and it has a couple of gastro places that you can call. I hope this helps you and I'll pray for your baby to be happy and healthy soon. I think that these places on the web site might be able to find a doctor for you, however just looking for a gastro doctor in your local childrens hospital would work too.
Good Luck to you and yours
Cindy
I am a member of, and the volunteer director of, Pull-thru Network. PTN provides information, education, support and advocacy for the families of children born with anorectal, colorectal, and urogenital disorders - including Hirschsprung's Disease. Our website is http://www.PullThruNetwork.org Please email me at PTNmail@charter.net and I will give you a free membership to help you start getting the support and information you need.
Bonnie McElroy
Thank you so much, I would love to learn more about the pull through website. I have looked on there before, but didn't have the money to become a member. I would appreciate it a lot.
Thanks and godbless
I was born with Hirschsprung's disease in 1959. I am now 47 yrs old and lead a pretty normal life. Although i did decide not to have children, as there is a slim, very slim chance that I could have children who are born with it. I do still have a few problems stemming from the removal of my large intestine, only about 3-4 inches remain, to attach my small intestine to the rectum, but over all its not too bad. I have learned that if I plan to do anything active, I cannot eat before, as whatever I eat, is digested quite rapidly and the need to find a bathroom is pretty intense after only about 45 min. after eating and then being active. I usually try to eat most of my meals at home, just for the sake of privacy when my problems occur..
If there is anyone out there who has had this disease and is experiencing the same things, I would live to hear from you.
Hi
I am an adult of 55 with Hirschsprung's and also run a support group for parents of kids with HD. You are most welcome to join and it is free.
You can find us at www.hirschsprungs.info
Please contact me if I can be of any help.
Gerry McGregor
Dear brodiesMom,
I was diagnosed with HD when I was 9mths old. It took a while for the doctors to figure it out cos I am a female. It occurs 5 times as much in males than females. I had a full pull-through surgery, with no ostomy(the bag) because at 9mths I was old enough to undergo the surgery.
According to my parents, after the surgery there was a huge improvement, but honestly there were difficulties as well. I had infections, I had problems soiling my pants and some times the other kids would be mean, cos they dont understand.
But at the age of 22, I am relatively fine, with some symptoms of IBS. My stomach is generally sensitive, prone to ocassional boughts of constipation, gastric attacks and indigestion. Otherwise, I am completely healthy.
I am really sorry to hear that your son has HD, and my advice is to support him fully throughout the years like my parents did. The physical recovery is initial, and short term, but the emotional recovery especially later in the years takes a while.
I hope this helps!
Feel free to ask me any questions! :)
I have a new grandson. He is 6 weeks old and has just been diagnosed with Hirschsprung's. He is such a tiny little boy, weighing only 5 lbs when he was born as his mother, my daughter, had preeclampsia and he was born 3 weeks prematurely. He had not passed his meconium when he left the hospital after 8 days. In the following weeks, he had terrible acid reflux, in which he would stop breathing, and gas and hardly any bowel movements at all. He was put back in the hospital at 2 weeks old because of his stomach distension and lack of BMs After 2 days of his pediatrition doing nothing at all to help him have a BM and giving us no encouragement that they even had a clue what his problem was, my daughter insisted he be taken to a different hospital. When he was admitted to that hospital, he was almost septic from the backup of waste in his system. They were pumping stool from his stomach and irrigating him rectally. The following day they told us they were 99% sure he had Hirschsprung's. We are trying to digitally stimulate him to have bowel movements so the little guy can gain weight and get stronger before he has surgery. We are not sure at this point that he won't have to have a colostomy. I have a question for anyone who can answer. Since we are digitally stimulating Logan, he passes stools that look like melted peanut butter. His doctor says that is not a bowel movement but a spillover. Has anyone run into this problem? And what should a bowel movement look like for a 6 week ol who is on hypoallergenic formula?
How experienced are Logan's doctors with Hirschsprung's Disease? Have they done a suction biopsy of his colon to confirm the HD diagnosis? A colostomy would be a good thing - it would take the pressure off of his colon and prevent further damage due to the stool sitting in his colon. Have they made any other suggestions for removing the stool that is blocking his colon if they think the stool that he is passing now is "overflow" . That is not uncommon in children who have HD.
I also would like to recommend that you and Logan's parents join Pull-thru Network. You can read more about our support group at www.PullthruNetwork.org. If I can help you further please email or call me.
Bonnie McElroy
Pull-thru Network
205/978-2930
PTNmail@charter.net
My son Owen was diagnosed before we left the hospital on day 3. He had a colostomy and we were sent home to keep the skin under the bag "clear" and to return at 20lbs for his pull-thru which they said would be around age 1 (which I could hardly believe at the time). The best piece of advice I received was to become "completely" educated on his condition and the digestive system. Since day 1 we have used a structured approach to his wellness including eating schedule and content; sleeping and activity and a TON OF PRAYER. As a result, during the first 4 months of his life, his skin never broke down and remained pink and healthy. He weighed in at 19.5 pounds at four months and we did the pull through 8 months early.
At age 2 or so, he became blocked in his upper intestine and we were back in the hospital. Thanks to our surgeon, he was able to clear the blockage while Owen was under and we were able to avoid another surgery. Then started the regular addition of fiber (we call it medicine juice). Today, Owen is 101/2 and wrestles at 90 pounds, he plays the piano, takes art lessons, is an avid reader, plays football and gets in trouble at school just like all of his friends (thank God). Recently he has had some troubling stomach pains so we are in the process of xrays and some GI testing. In response we have added 8 cups of water per day and 2 tbsp of flax seed to all of our diets (it's a family thing). This week has been pain free, but we are going to proceed with the testing anyway just to understand the cause.
There is a GREAT book called Digestive Wellness that I'd recommend you read by Elizabeth Lipski. It is in "english" not so medical-speak. She discusses the digestive process from beginning to end. It helped us in our decisions not to get cable, to not frequent fast food restaurants, limit sodas and white sugar, keep a regular eating/sleeping schedule plus even change household products to eliminate any undue burden on his (our) immune and digestive systems. I consider it my job for 18 years to go to any lengths for the him (our family) to create a home that is "nourishing" in all respects, physical, emotional and spiritual so that he(we) are as "well" as possible plus teach him to do the same. Then he will be on his own...
Sorry this is so long, but I was so freaked out in the beginning and back then there was not such easy access to others. So I just wanted to share my experience, strength and hope with you. Another thing you might want to do is go visit a mom/family in your area and watch her son playing - I did this and it was so awesome, it really gave me hope for our future. I also was concerned about this happening again, so I met with the geneticist at Children's to understand the statistics. We decided to have a third and she was just fine..
Looking back I am grateful now that all he had was this disease and not some other things I have seen at Children's Hospital and in the doctor's office. We know what it is, there are things we can do to make a difference and it has changed my outlook on life in many wonderful ways. So hang in there, you are not alone and you will get through it.
We didn't have a name for Hirschsprung's Disease, 40 years ago. At least, no doctor GAVE us the name for it. My son was born with this and nearly died, before I took appropriate action. The doctors in our area didn't recognize what it was. Luckily, I realized that the water in this area, that we had JUST moved to, was extremely hard water.
At that time, being such a young family, and this being our first child, it was really hard for us to pay for a $1200 water sofener for our home. That is what we had to spend, in order to get what my son needed. Each week, we went to the doctor, and he had tests and such for his real lack of gamuglobulin. He was so anemic. His poor tummy hurt him so badly, that he was up all night, crying.
My mother came to help out. First, she made sure that I bought some 'spirits of peppermint' at the drug store, over the counter. With this, I filled a bottle with water (the soft water) and put the little bottle of peppermint top up to my index finger. This was all I needed. I put my index finger into the bottled water and swished it. (wash well, beforehand!). This was enough peppermint water to allow my son's abdoman NOT to hurt, and he could sleep all night. THIS was a total blessing for both of us!
My son was a 5 pound wonder, since he did grow to be a strappling 6'2", strong and healthy adult. He DID have some problems with hypoglycemia. I took him to Children's Hospital and we had it completely worked out. I quit work to stay home, as he was 9 by this time. His elementary school secretery was sweet to him, and wanted to make sure that I was home, so that HE could come home when he needed to. (Although, I had sent little snacks for him to eat at recess, his teacher would not allow him to eat them!). Still, he managed to grow up to be sweet, and play all the 'ball' games really well. He raced for Schwinn, as well. Now, he fishes and hunts all the time he can. This is put in, to assure you that he did get well. good luck, I hope any of this can help you.
Yes they did a biopsy to confirm Hirschsprung's. I have been to Pullthrunetwork.org and I'm going to join. His doctor at Women's and Children's Hospital is Doctor Eduardo Souson. He wants to do the pull through surgery but won't rule out a colostomy. If the digital stimulation doesn't work, then irrigating him until he is strong enough for the surgery will be the next step. How can you tell the difference between overflow and a bowel movement in a Hirschsprung's baby? Thank you for your response to my post.
I would ask Dr. Souson how many HD patients he has a year and how many he or his staff follow regularly for post surgery bowel management. HD can be a very complex disorder and I would want your grandson seen by someone who has considerable experience. It is okay to question a doctor's experience, especially when you are dealing with a rare disorder.
I can't tell you how to know the difference between overflow and a bowel movement. The only way to really tell would be an x-ray to see if there is still a blockage in Logan's colon. As I said before, allowing that blockage to continue to not good for Logan's overall health and would likely contribute to his colon getting badly stretched. The HD surgery is going to mean the removal of of the colon that does not have ganglion cells and you don't want the remaining colon to be stretched or have to also be removed. He's going to need as much healthy colon as possible. A colostomy is not so bad, but once again there is more than one way to do a colostomy and you'll want to be sure that Logan's doctor is experienced with HD and does the right type.
Bonnie McElroy
Pull-thru Network
My boyfriend has had 3/4 of his intestine removed at the age of 40 due to an infection. He had Hirschsprung's disease when he was a child but had corrective surgery when he was three years old.
My question is what does he eat for maximal nutrition? There are plenty of resource about children's care but none for adult care. My boyfriend is not in the best of health since the last surgery and I don't know what to feed him except vegetable smoothies with protein powder and EFAs. I'm feeding him supplements but think that is going down the toilet.
I'd appreciate any resources or feedback.
Thank you to everyone who provided links. I must spend some time reviewing materials there as Hirschprungs Disease is a topic that I would like to know more about. My little girl has since passed (sudden cardiac arrest). She had many GI issues - which are related to the rare chromosome duplication that she was born with, tetrasomy 18p. There is also a family history of Crohn's Disease and Bowel Cancer. I have noted in looking through medical reports that 2 different doctors questioned whether our little girl may have had late onset Hirschsprung's Disease.
Blessings to all,
Velvet
Administrator to Tetrasomy 18p Canada
"Samantha's Syndrome"
http://www.tetrasomy18p.ca/
my son was diagnosed with hirschsprungs at 1 day old and had his first surgery right away. This was very scary for us and very emotional, especially being our first child. the doctors and nurses were so amazing at children's hosp in knoxville and we all got thru the experience. my son had to wear a colostomy bag for a short time Taking care of this was very easy to do, the nurses showed us how to change the pouch and care for the stoma (opening in his belly). He had corrective surgery (pull thru) at the age of 2 1/2 months.
My son was diagnosed with Hirschsprungs within days of his birth. He is now 14 months old and he has frequent loose stools which cause diaper rash. The pediatrician thinks he is getting too much fiber. I had been giving him a diet rich in fiber to avoid constipation but now I'm not sure what kind of foods to give and what to avoid. Do you have any advice??
Hi, I am an 20 year old, who has had Hirschsprungs from Day 2 in my life. I am living a normal life, have not
been able to speak out to any of my mates about my condition but have been able to somehow keep it to myself. I play football, cricket and rugby. The only problems that i find it very hard to tell people about it and also i feel very nervous to go away for a holiday because of this condition.
Just want to hear some advice really and see how i can get over this.
Thanks
Brodiesmom - I am so glad for your son that his condition was diagnosed early. I had an uncle (whom I never met) who had Hirschprung's. Back when he was alive in the 1940s and 1950s it was not recognized - or, if it was well known to doctors, he was not taken to see them. He apparently suffered through his short life both from the condition and from the treatment he received from those around him. He died a relatively young man from complications of this syndrome, such a waste! I really am happy to hear that your young man is identified early and that you are pursuing treatment for him appropriately. My best wishes for a full and rewarding life for your son!
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