I have posted about this before and I am unfortunatly back. My son is 13 months old and he received his “reconnect/pull” through 7 months ago. I have addressed this issue with his surgeon and pedi, and neither one of them seemed to be concerned. I am concernec because it is still going on. My son will be happy and playing, then all of the sudden he screams and sort of hunches over, this takes place for a few seconds, then you hear a loud gurgling noise from his tummy, then he’s fine. He also wakes up in the middle of the night with stomach pains. I understand that HD kids have had their insides manipulated, but this pain is not normal and I need answers as to what is causeing it and how to fix it. Have any of you been here??? Please help…
My son is 2 and still does the same thing, with his tummy swelling up too. Sometimes when I insert a finger the poo comes out and this helps him… sometimes it doesn’t…
Gas maybe??? Ask about doing irrigations to relieve the gas if that is what it is. My sons tummy has done that too and it turned out to be gas that was trapped in there. His kinda sounded like boiling water.
Janel
I was told it was also gas. We were in the hospital and the nurse was listening for his “tummy noises” when it happened. She jumped back so fast because while it didn’t sound like boiling but more like a toilet flushing. If it sounded like that without the stethoscope, I can understand why she jumped as high as she did. 
We are STILL dealing with the same thing, his isn’t so much during the day but every single night he wakes up bringing his knees to his tummy and rares his back! I have mentined it to the GI, surgeon and ped. they all sya it’s just gas! When my baby is crying off and on for three hours I really don’t think it’s just gas. Some nights it may only be 10-20 minutes but here lately he goes on for hours. I just wish he could tell me what is hurting him, he is getting a few more teeth but I think it’s a tummy issue. He was having bm 6-8 times a day now it’s about 2-3, I don’t know whether to be concerned or happy! HD is such a mystery sometimes, we worry when he goes too much and then we worry when he just has a few.
How old is your son?
The symptoms sound just like Chase when he was colicky. For some reason early evening seems to be the time when the crying starts. Most babies outgrow it by 3 months but it can last as long as 9 months. I work with a lady and her son had it until he was at least 9 months but more like 12 months. She ended up weighing 85 pounds by the time he “outgrew” it.
I know it is exhausting and it seems like nothing you try works… but the back arch and evening crying are typical colic. I think colic is harder on HD babies that have had their pull-through.
Our doctor told us that Mylicon works for some babies and doesn’t for others. It did help a little for us but I also watched my diet very closely as I was breastfeeding at the time.
My son is almost 16 months old! So I’m guessing he shouldn’t be coliky but maybe some seperation anxiety? He has hit a big milestone (walking) and I’ve heard when they do they will go through a lil phase. He has also started to cry when I leave the room or his sight! But I would think if it’s just that he wouldn’t go on crying for so long if I am holding him. I just don’t know.
My son is 2 and still does the same thing, with his tummy swelling up too. Sometimes when I insert a finger the poo comes out and this helps him… sometimes it doesn’t…
That definitely sounds like something an irrigation tube would help…
Janel
My son is now 18 months old. after 5 surgerys and illeostomy and a colostomy (which was supposed to be a minor case of Hirschsprung’s, ha) he still gets alot of gas.
There are days when there is hardly any in his ostomy bag and then there are days where he can fill the bag with air in a couple of hours. Right now it doesn’t hurt him because he doesn’t have to push anything out but i know it will later on. In light of all of this though his most recent surgery in august has reveled another cell type in his colon, our doctor has referred to it as eosinophilic gastroenteritis.
In other words some food are causing an allergic reaction in his bowel that is causing it to swell and ulcer. It has yet to be confirmed if he definitely has this. My response to the gas pain is to get the kids checked out. No other doctor or parent understands what it is like to sit at home and watch your child’s every move and wonder what is happening now.
Keep asking until you feel satisfied with the answers you are given.
I once came across an article, sorry I don’t have the link, but I c/p it into my email just in case I ever felt the need to discuss w/ the dr. I have NO idea if this could be the cause, but
All surgery causes some scar tissue as part of the healing process. It’s the same on the inside as it is on the outside. You may have heard about adhesions. Adhesions are filmy bands of scar tissue that may occur within the abdomen. They can develop in response to prior abdominal trauma or infection, but most often occur after abdominal surgery - often many years later. Adhesions themselves, like any form of scarring, are not harmful. In fact, most adhesions cause no symptoms at all.
The most serious complication is intestinal obstruction. Sometimes, adhesive bands will connect between two loops of small intestine. This may cause a kink to form in the small intestine and lead to a bowel blockage. Just like bending a garden hose stops the flow of water, a kink in the small intestine can block the flow of food in the digestive tract. Symptoms of a blockage of the small intestine would include crampy abdominal pain, distention of the abdomen, constipation, and vomiting. Neither x-ray studies nor scope tests can see adhesions, but x-rays can see the dilated loops of small intestine above the blockage. A blocked intestine is a medical emergency and requires hospitalization. Without treatment, severe dehydration and electrolyte imbalances occur. Eventually, the blocked intestine dies and develops gangrene and peritionitis which can be fatal. Minor episodes can be treated by withholding food for several days and inserting a tube down though the nose and into the stomach (NG or nasogastric tube) to pump out the stomach contents. If the blockage persists, exploratory surgery is needed to release the adhesive bands.
The other common complication of abdominal adhesions is pain. Since adhesions can develop between surfaces inside the abdomen which are not normally connected, they can tug and pull which may be felt as persistent adominal pain. As mentioned above, neither x-ray studies nor scope tests can see adhesions, so the diagnosis is difficult. In severe cases, surgery may be needed to make the diagnosis and lyse (cut) the fibrous bands. Unfortunately, since any abdominal surgery can lead to future adhesions, they are often recurrent.
Thank you for posting that article. During my son’s pull through last December, the surgeon did inform us that my son had a lot of adhesions, so that has always been in that back of my mind.