Recurrent enterocolitis

Hirschsprung's Disease
#1

I have a 23 month old son that was diagnosed with HD when he was about 6 months old. He had a single laparoscopic repair, which seemed to go well. He did dilations for about six months at home, twice a day titrating done to one a week. About two months after we stopped the dilations, he was hospitalized with enterocolitis.

He did flagyl for a few weeks and also the dilations were restarted for a short time. he seemed to get better, but again in July he started getting bloated again and have very loud gurgly bowel sounds. He has a very large colon which could be seen on xray.

Our surgeon decided to order a barium enema, which we did. Our son ended up getting extremely sick after the enema and was unable to pass any of the barium and we subsequently spent nearly a week in the hospital. Doc decided to perform another rectal biospy to check for a reoccurrence of HD and while in the OR also decided to take out some mucsle of his inner rectal sphincter, thinking this would make it easier for him to poop.

Our son actually did very well for about a month and was as normal as he ever was, but just this week, he started vomiting and getting bloated and we spend another few days in the hospital with the diagnosis of enterocolitis again.

He is going to be on the flagyl for a month this time and again we are doing manual dilation twice a day to help him pass the stool and gas that he seems unable to pass on his own. Doc has brought up twice now that he may need a decompressing colostomy temporarily, which freaks us out.

I’m just wondering if any one has had similiar problems and how things turned out. I’m also wondering if people tend to follow with pediatric surgery or if GI specialty should be involved. Also wondering if anybody else is living in Wisconsin and what hospital/doctor you go to.

#2

i wish i did read your post earlier. my daughter had the same proglems from birth to age 6 with over 50 hospitalizations/surgeries. The last “experiment” they tried before a permanant colostomy was the iliestomy tube. We had that almost 2 years and it was great. She is now tube free, hospital free and doctor free! We visit once a year for check ups. It ended up that after all the barium enima’s, botox. exploritory surgery,biopsy, they found that teh connections with her large and small intestines was twisted and damaged. after removing the “dead” parts and the iliestomy to help calm her system, it a miracle. We went to UNC in NC, CHildrens hospital of Philadelphia, CHildrens Hospital of Pittsburg, Geisinger Hospital in a town I forget and than eventually back to UNC where they all said the same thing. I wish you the best of luck, but do know it will get better. I would never had thought I would have a daughter healthy enough to tumble and play soccer. She’s learning as we are. Its all experiments.

#3

Wish I saw this sooner, I have a lot of experience with this situation, and currently my child does a iliestomy for the same reasons you’ve stated your ped surgeon wanted one for your son. How is he now?

#4

I think many tend to have their surgeon do follow up care especially if you got a good surgeon who knows about HD. Technically the GI should do follow up care but many GI’s don’t know what to do for the HD follow up care besides giving them meds.

I don’t know any doctors in your state as I am in California but two of the topic guru’s whom many people take their kids too are Levitt or Pena in Cincinatti children’s. I say the top guru’s because they are the ones who created the first colo-rectal center.

I wish you the best. One thing that would worry me if the doctor removed the muscle then as your child gets older they might be incontinent and that is a whole other problem many deal with!

Janel

#5

our son is doing ok he has been potty trained for about a year no surgeries since last post but many hospitalizations over the years for enterocolitis he has had two botox injections which we thought helped tremendously but only last for 5 months or so we have gotten many other opinions from different doctors and are frustrated with the wide array of opinions ive accepted that the real answer to all of our questions is simple they just dont know but they sure do have theories