Enterocolitis after Treatment for Hirschsprung’s Disease
How much of a concern is enterocolitis after treatment for Hirschsprung’s disease?
QUESTION – My son was diagnosed with Hirschsprung’s disease at 4 months old. He then had a pull-through surgery. He was also diagnosed with enterocolitis. He is 4 years old now and every time he takes antibiotics (for the flu, ear/sinus infections, etc.) he is required to do irrigations while doing the antibiotics, even if there are no symptoms of enterocolitis. My son has not had any signs of enterocolitis for more than a year, and recently his stool has started taking on a more “normal” consistency by watching his diet closely and being sure he is properly hydrated. Every time we go through irrigations it takes months for his digestive health to get back to normal.
Are there different treatments we can put him through? And is enterocolitis after Hirschsprung’s disease as big of a concern as my pediatrician makes it out to be? I wasn’t able to find any studies on adults and enterocolitis that were related to Hirschsprung’s. Quite literally if my son has a runny nose or is tired they never try and look past the enterocolitis, but always jump to the Hirschsprung’s and enterocolitis. Any advice/suggestions?
ANSWER – Enterocolitis is a clinical diagnosis. The symptoms of early enterocolitis may be indistinguishable from a simple viral gastroenteritis: diarrhea, bellyache, a little fever, maybe some vomiting. Because enterocolitis can progress rapidly and even result in death, most pediatric surgeons like to err on the side of caution and treat it with irrigations, antibiotics, and iv fluids even if they’re not sure of the diagnosis. When the treatment works, the child recovers as if he had had a viral gastroenteritis. There are no tests that we can do that tell us the difference between enterocolitis and gastroenteritis. Your child may have had enterocolitis that did not progress to serious disease because your child’s doctor was aggressive and conservative, going with safety over comfort. Or your child may just have had a bug that was going around. We understand that must be frustrating to you and your child.
One of symptoms of enterocolitis is abdominal distension and your child’s doctor becomes concerned about bowel obstruction. Worries about bowel obstruction may contribute to why the diagnosis is considered whenever this happens to your son. However, it is also possible that he has a motility disorder associated with his Hirschsprung’s disease, and that a viral infection or food intolerance may be exacerbating the motility disorder without any real enterocolitis. Ten percent of all children with Hirschsprung’s disease have a motility disorder in the part of the colon that was left inside because it had normal ganglion cells. Sometimes these children suffer until they go to a center that specializes in children with motility disorders. These centers do a test called colon manometry. In colon manometry the child is sedated so that the doctors can place a thin plastic tube that measures colon contractions through the remaining colon. When the child wakes up, the doctors determine the motility patterns in the colon. If there are uncoordinated contractions, further surgery may be needed before the child will be well.
It’s hard to sort these issues out without knowing the child and evaluating him in person. We would suggest that you have a conversation with your surgeon/gastroenterologist and make sure you understand exactly what he/she is thinking when managing your child. If questions remain, you may consider getting all your questions answered at one of the specialized centers that does colon manometry in children after successful surgery for Hirschsprung’s disease. This is something you can discuss with your son’s doctor.
– Jacob C. Langer, MD and Paul Hyman, MD