Side Effects After Pull Thru?

Hirschsprung's Disease
#1

My son was diagnosed with HD in late April when he was 5 mos. old. The HD diagnosis was made when we brought him to the emergency room with a very serious case of enterocolitis (in fact he was very near death). Fortunately we had a fantastic team of Dr.s who suspected Hirschsprung’s within minutes of hearing us describe his history of constipation since birth. The diagnosis was confirmed through biopsies taken during an emergency surgery. Approximately 4 inches of his colon was removed and he now has a colostomy.

This brings me to my question. The surgeon treating my son has led us to believe that after the pull thru (currently planned for early October) he should have no residual problems from the HD or removal of his colon whatsoever, other than perhaps a nasty diaper rash for a short time after surgery. But based on the messages posted here it sounds like there are many potential side effects including lack of bowel control that are very common with HD. Has anyone here had a successful pull thru with no long term HD side effects? I’m not sure that it is relevant, but with the colostomy he shows no signs of constipation or diarrhea at all.

Please let me know what your experience has been with side effects following pull thru surgery. What questions should I be asking our surgeon prior to pull thru?

#2

I felt exactly the same as you- my son is nearly 5 months now. Our surgeon said that Chase would be totally normal after his surgery. The more research I did the more I realized that may not be true. Chase had an early diagnosis and a one stage pullthrough at 3.5 weeks. They removed 11cm. He has done great so far. We did get the horrible rash but I use Ilex or Sensicare and cloth diapers and we are able to keep his bottom clear. I have a whole regimen that I can share with you- just email me directly if you’d like to know.

We finally visited with a GI because the more I learned the more questions I had. She told me that most kids will do great. Others will suffer from chronic constipation or diarrhea- both are treatable with diet or meds. She said that most people that join a group like this or others do so b/c they are looking for answers or are having problems. The parents of kids that are doing well aren’t searching for answers so you don’t really get to hear the good stories. She told us that surgeons say babies will be normal b/c they will functionally be able to poo so their job is done. They don’t realize everything else that goes along with HD and the complications that can arise.

Like I said Chase is doing great. I have days that will go by and I don’t even think about HD or how he was so sick. He doesn’t even seem like the same baby. What a blessing that they were able to diagnose your little one just in the nick of time.

Jo

#3

Thanks for your input. What you said makes sense - the surgeon’s perception of “success” is based primarily on the surgical outcome. It also makes sense that someone who is not experiencing difficulties would not be as likely to participate in discussion boards/groups so we don’t hear those stories often. I would really like to hear about your daily regimen but I am not sure how to find your direct email address. Please email me at btpashley@msn dot com if you have a chance. Thanks again!

#4

I totally agree with Kjwarren reply. However our surgeon told us our son will never be normal after surgery because let’s face it all HD kids will never poop like a non HD kid. I too have yet to meet an HD family whose kid didn’t have some form of issues going on afterwards or even years later. Some issue may very mild and then some can be severe. I have also learned that the type of segment you have doesn’t mean your long term effects are gonna be better or worse. I’d say the issues we are dealing with are pretty mild. We are dealing with leakage, mild constipation and the rash!

Janel

#5

My son had a 2 stage pull through. He was diagnosed at 4 days old and was given a temporary ostomy. Then at 3 months they went in to do the pull through and he had a lot of scar tissue and the procedure took longer than expected so the surgeon decided to do a temporary ileostomy.

We had that until he was 6 months old and then he had what they refer to as the reconnect. This is where they sew the intestines together, because the pull through was already done previously. My son is now 10 1/2 months and is a pistol.

I will tell you that about 6 weeks after surgery he acted like he was in pain when he would go poo or pass gas. We saw the surgeon and pediatrician and he checked out fine. This lasted for about 2-3 months.

I believe that it probably did hurt maybe a little, but it was also a new sensation that he just had to get used too. He no longer does this. It is just hard because they can’t talk and tell you whats wrong. You just have to keep trying different things.

I tried mylicon and they helped a little. He was also cutting his top 2 teeth and bottom 2 teeth so he was a little sensitive at that time.

#6

Hi, my son is now 15 months old. He had his pull-through at three weeks of age. Our doctor told us the same thing. Most children do well after getting a pull through. But ours didn’t appear to be one of that group.

Since pull though we have had about 4 or 5 bouts of entercolitis. This worst was when he had a blockage in November. The emergency Dr. decided to give him two enemas and they gave him toxic colon. As a result he went into septic shock and ended up in a coma for three days.

After recovering from that we had a check up in december and he was getting ill again. So december 22 he got and Illeostomy. Since then he has still been in the hosptial 3 times for iv fluids and a blockage. The plan for him is to have a reversal on tuesday.

The doctors tell us that he should be better now. I find that hard to believe. Stims and irrigations will not be pleasant. And I feel like I have to learn his signs and symptoms all over again.

I am new to this web site so i don’t know much about it. But it is nice to know that I am not alone i how i feel.

Thank you.