My baby was born with hirschprung`s disease, all of the large intestine is affected. He is 9 months old. The doctor did a ileostomy and later, he will do the pull-trough. Your experiences could be helpful to me. Thank you. My little boy was very early and suffered tummy problems almost from birth. At one point Hirschprung's disease was suspected altough luckily this was found not to be the case.
The cause was not found but they performed an ileostomy to help relieve the symptoms.
He has alot of other problems including a tracheostomy but taking care of the ileostomy was the hardest thing for me to get used to, it made me physically sick!
but it is surprising what you get used to and after a while I started to see it as a blessing. I least he never gets leaky nappies!!
The only thing is to remember not to put anything at all in the bath water as it loosens the bags. Instead I wash him down using soap and a flannel whilst he is lying on a towel and then when he is clean I pop him in the bath.
Most little boys hands find their privates early on but instead my baby loves pulling on his bag. As soon as his nappy is off his hand is straight down there giving it a tug, he is now strong enough to whip the whole thing off and once ended up with an eyeful, literally!
The other thing is having to discreetly empty the bag of air. This can be done quite sneekily without anyone suspecting. Comes in handy if anyone barges in front of you in a queue. Just let the air out, wait a second then give the offending person a disgusted look so everyone thinks they did it!
Seriously though, I know how heartbreaking it is to see your baby suffering. To put up with the endless appointments and hospital visits. But these little ones are so resilient. It is amazing how they seem to just sail through all the hard times and still find the time to charm you over with a winning smile. Everything works out for the best sooner or later. the most important things to be considered are:
1- obstructive symptoms
2- ensure that ganglion cells are present in the remaining colon by histological examination I found some information about the operation, hope it helps:
* If my child has Hirschsprung's disease, how will this be treated?
The part of the intestine without ganglion cells must be removed with an operation.Usually this is done in one operation called a primary repair. In most babies,we operate without making an incision (surgical cut) on the abdomen. The operation is done with telescopic (laparoscopic) instruments through the anus. In
some babies,more than one operation may be required.This is called a staged repair. In the first operation -- or first stage -- the part of the intestine without ganglion cells is removed and a temporary stoma made. A stoma is an opening on the abdomen where the intestine is brought out to the skin. If your child has a
stoma, stool will drain into a bag worn on the outside of the body. Several months later, the stoma is closed and the intestine is sewn together. Your child's pediatric surgeon will talk to you about the best operation for your child.
After the operation, if your child does not have a stoma, he or she will have a lot of diarrhea. It will be important to protect the skin around the anus at all times. Your child's nurse will teach you how to mix and apply a cream called "butt balm." Use this cream at all times to protect the skin from the irritating effects of diarrhea.
The recipe for butt balm is: a four-ounce tube of Desitin庐 ointment, a one-ounce bottle of Stomahesive庐 powder and a 1/2-ounce bottle of Mycostatin庐 powder combined to create a cream the consistency of peanut butter.The surgical nurse will order the prescription powders needed to mix the balm. Please give us the
phone number of your pharmacy once you go home.
* How long will my child remain in the hospital after the operation?
If your baby has anal surgery without a stoma, he or she will go home in one to three days. If your baby has a stoma, he or she may stay in the hospital longer. Your baby will be ready to go home when he or she is having bowel movements, eating and drinking without vomiting, and is comfortable on pain medication taken by mouth.
* How do I take care of my child at home following discharge from the hospital?
Pain: Prescription pain medication (narcotics) usually isn鈥檛 needed once your child is home. Most children only need Acetaminophen (Tylenol庐) or Ibuprophen (Motrin庐). Give the medication according to the dosage directions on the label. If your child is still uncomfortable, call our office and we may prescribe something stronger.
Dressings: If your baby has an incision on the abdomen there will be a gauze pad and clear plastic dressing in place.This dressing is to be removed two days after the operation.There may be a small amount of blood on pieces of tape called Steri-strips庐 under the dressing.This is normal. Your child can bathe with the Steristrips 庐 in place. These can be pulled off one week after the operation. The skin around the incision may be
red and bruised and slightly swollen. This can last several weeks.There will be no visible stitches to remove because they are under the skin.The stitches will dissolve after several weeks. Sometimes these stitches are irritating and will come out of the skin through the incision. If this happens, the incision will look red and may drain white, yellow or red fluid. This can be normal for some children and will get better with time and daily bathing.
Healing ridge: If your child has an abdominal incision, you will feel a firm ridge just under the incision once it is healed. This is called a healing ridge and it is normal. The healing ridge lasts for several months before it softens and disappears.
Bathing: Your child may bathe or shower as soon as two days after surgery. Once your child is feeling better, either in the hospital or at home, he or she may bathe or shower. Bathing is a good way to sooth the anal area and gently clean the skin without injury. Some parents prefer to use a hair dryer, on the low (cool) setting, to dry the anal area well before putting on more protective cream.
Skin Care: Continuously apply the recommended protective skin care products. Begin as early as the day of surgery.Do not stop using the skin protective products until there are fewer bowel movements, usually after many weeks. If your child develops a rash that does not get better, call doctor.
You have to inform who ever done the operation if:
路 You have any concerns you have about your child's recovery
路 Your child has a temperature of 101 degrees or higher
路 Your child鈥檚 incision is red
路 Your child has severe pain at the incision
路 The incision that is painful to touch
路 Fluid is coming out of the incision
路 The number of bowel movements changes each day
路 There is no bowel movement for one day
路 Red rash around the anus is not getting better
路 You have any questions about your child's stoma This is a genetic disorder that results in the lower bowel(colon) having no nerves. This results in no sensation of a full bowel and the colon enlarges as more waste is built up without evacuation. Another name for this is mega-colon-the colon continues to enlarge and the waste stays in the colon as the water is reabsorbed into the blood stream. Severe constipation with very large, hard, and dry bowel movements that are very painful to evacuate. The only indication of the need to empty the bowel is when enough backup occurs to cause abdominal pain. Older children will complain of a belly ache and they need to be encouraged to try to move their bowels daily to prevent this. Some children require daily mineral oil dosage to prevent severe constipation. Another side effect as the child gets older is plugged up toilets from massive large bowel movements. Diet can help as well. In infants giving them apple juice every day can be helpful. Talk to your doctor about your childs diet and use of mineral oil to help with this problem. As your child gets older and is potty trained engourage daily attempts to move bowels. The longer the waste is in the bowel the larger and harder it gets. If enemas are ever required NEVER USE A SOAPSUDS TYPE-the liquid is just absorbed and will really mess up the electrolytes. If needed use the fleets oil retention enemas. Don't use any of these ideas without first discussing them with your MD. |
