A cone enema program is probably the most universally available and successful bowel management program for children with Spina Bifida. It’s fairly easy to start (as bowel management programs go), nonsurgical, and with the right support and resources, most families can eventually figure out a successful program to keep the child clean and prevent constipation. In many cases, children soon are able to start wearing big kid underwear.

The cone irrigation system was actually designed to flush a colostomy. But it has become a popular tool to administer enemas on children with Spina Bifida, who typically have less tone in the anal sphincter, because the cone works great as a “stopper” to prevent the water from immediately flowing back out. The goal of the cone enema program is to flush the stool from the bottom part of the colon so that none comes out until the next enema (social continence), and to allow the stool at the top of the colon to keep moving down (preventing constipation).

Getting Started
For parents who want to start a program but do not know where to start, it is recommended to contact your child’s Spina Bifida clinic and/or Urology office. If neither is familiar with the cone enema, parents can start a program on their own and with the help of other, more experienced families on the Bowel Management for Spina Bifida Facebook group.

Cone enema supplies can be prescribed by a doctor, covered by insurance and fulfilled by supply companies. Otherwise, many families purchase a cone enema system on Amazon. Simply search for “cone irrigator” to find several options in the $40 range. One kit usually lasts 6 months, sometimes more and sometimes less. You will also need to purchase an over the counter lubricant for the cone.

Since you start an enema program to help alleviate constipation, many children are badly constipated before starting. We (and most bowel management doctors) highly recommend doing a colon clean out before starting any new kind of bowel program to give the child a fresh start. Even if you think your child is not constipated, if you skip this step you will probably regret it when you have trouble finding an effective enema routine.

The “recipe”
What to put in the enema is the trickiest part and usually requires trial and error (especially without a knowledgeable medical professional and frequent belly X-rays). The three big questions are:

• Water or saline? Most people use plain tap water in the enema. Using tap water is easy, and most medical professionals would agree it is safe. Some doctors prefer saline. They say saline more closely resembles the body’s natural fluids and is therefore less likely to be absorbed in the colon. It’s up to you. If you find that much of the water is not coming back out, the child urinates more after the enema, or if the child feels poorly after the enema, you may want to consider using saline instead of water.
  • How to make saline: Wash out an empty 2 liter soda bottle. Fill with tap water. Add 3 tsp of table salt. Shake. Pour the desired amount (see below) in the enema bag and save the rest for the next night. Measure exactly each time. Too much salt in the enema can make a child ill.
  • Note: If your water comes from a well, it is recommended to use distilled water instead.
• What temperature should the water be? Using water that is too hot or too cold in the enema can cause discomfort and cramping. You want the water to be close to internal body temperature. There’s no need to measure the temperature with a thermometer. Just shoot for very warm water straight out of the tap. If you are using premade saline, put the 2 liter bottle (or the filled bag) in a sink full of hot water for a few minutes to heat it up.
• How much water/saline? The general rule of thumb is to use 10 ml of fluid per pound the child weighs. For example, if the child weighs 40 pounds, you could try using 400 ml water or saline. Of course this is just an average place to start, and with trial and error you will see if your child needs more or less liquid. The maximum amount of water would be 1,500 ml, no matter the weight, since more than that typically doesn’t make much of a difference.
• Should I add anything else to the solution? For some kids who are not particularly prone to constipation, using only water or saline may be enough. But for most kids with Spina Bifida and neurogenic bowel, water alone is not enough to flush the colon. They also need some sort of irritant to get the bowels contracting and squishing the stool down. Here are some examples of additives:
  • Baby soap: Many people start with a squirt of baby soap, such as Johnson & Johnson, and then increase by a squirt or two as needed.
  • Glycerin: If baby soap is not found to be effective, the next step is glycerin. Glycerin is a non-toxic, gentle, thick liquid used to make soap and other products. It can be difficult to find in stores. Some Walmart stores carry small bottles of glycerin in the pharmacy beauty sections. Those who use glycerin daily may prefer ordering it by the gallon online, such as on Amazon.com. Most people start by using about 10 ml, and you can increase to about 40-50 ml if needed.
  • Castile soap: Castile soap is also safe and is a little easier to find than glycerin, but it is considered “stronger” than glycerin or baby soap. A popular brand is Dr. Bronner’s unscented castile soap, which can be found in the “natural” section of grocery stores, at natural food stores such as Whole Foods, and often at Target in the health and beauty section. It is usually given in 10 ml increments. Castile soap can also be added to the glycerin regimen to make it stronger for especially stubborn colons. For example, a 40 pound child may use 400 ml saline, 40 ml glycerin, and 10 ml Castile soap.
  • Other: There are various other options to include in the enema. Some use a daily dose of Miralax in the enema instead of taking it orally. And when a clean out is needed, some will use 1/3 , 1/2 or a whole Fleet enema in the solution (with or without other additives). Please note it is not safe for children to use Fleets (phosphates) on a long term daily basis.This is a process of trial and error. Start with the gentlest additives, and add to it as needed. Document what you’re doing at first, and it may take a few days or weeks to know if what you are doing is working.

Oral Meds Plus Enema?
Ideally, stool softeners and laxatives would not be needed with a really effective cone enema program. But of course that is not always the case. Some parents continue with the oral medications, others decrease the amounts, and some find they can discontinue them after some time, trial and error. If the child becomes constipated, instead of resorting back to Miralax you can try increasing the additives in the enema. Some people have success with continuing Miralax to keep the stool soft and easier to flush out with the enema. For some kids, Miralax makes the stool too soft and causes accidents between enemas. Just a note about Senna: Because its purpose is to make the bowel contract and move, it could work against a bowel program. Ideally on an enema program, you want the colon to empty once a day and for it to not empty the rest of the day.

How often ?
Starting an enema program can seem daunting. It can take about an hour from start to finish, and that is difficult to cram into already busy schedules. However, anyone who is experiencing success with a cone enema program will tell you that the time spent is WELL worth it. If your child can be clean from stool all day, every day, and you don’t have to worry as much about constipation, you’ll never want to give up that hour at night. Think of all the time you will save changing poopy diapers and worrying about constipation! Most families do the enema every single day. Some do it every other day, and others do it almost every night but might skip a weekend night or a particularly busy weeknight here and there. Because the cone enema cleans out only the rectum and the lower descending colon, it is very important to do it regularly to avoid accidents and constipation.

When?
Most people do the enema routine at night before bed. That is when people typically have the most time. And if there’s a little accident shortly after the enema (which happens occasionally but ideally wouldn’t) it usually happens overnight instead of, say, at school. That said, it really depends on your family’s schedule and how your child’s bowels react to the enema. Some prefer to do it first thing in the morning, or as soon as the child gets home from school in the afternoon.

HOW?
Now that you have all of your supplies and have prepared your child, it’s time to put this into action. Don’t let the idea of the procedure freak you out. You’ve been dealing with this child’s poop for how long now?

Step one: Prepare the enema. Get out the potty seat, mix the solution, get out the supplies, lube the cone, and put on a non-latex glove if desired. Provide a step stool or stack of books to support the child’s feet and facilitate pushing when the time comes. Hang the bag of fluid from a command hook on the wall, a shower curtain hook, the shower head … whatever works in your bathroom configuration. The higher you hang the bag, the faster the fluid will flow in.

Step two: Administer the enema. There are two ways of doing this. Some parents have the child lay on the floor (on a towel, mat, pad, etc.) while they let the water flow in, hold the cone in for a few minutes, then transfer the child to the toilet. The transfer is tricky because it can get very messy. You must hold the cone in tightly while lifting the child and sitting them on the toilet. This also gets more physically difficult as the child gets older and heavier.

Most parents prefer to administer the enema while the child is sitting on the toilet, leaning forward. Depending on the configuration of your bathroom and how you and your child feel most comfortable, you may sit in the floor in front of the toilet and reach around while the child hugs you, sit on a chair in front of the toilet while the child hugs your knees, or sit beside the child while she leans forward over a chair, TV tray, your knees or your propped up legs. Let the water flow in, hold it in a few minutes, then lean the child back onto the toilet seat and swiftly remove the cone. This can still be messy, so have some wipes ready, but you’ll get better with practice.

Often parents are scared when they see how large the cone tip looks. Don’t be afraid. This cone is meant to keep the water inside until you’re ready for it to come out. With lubricant, it shouldn’t hurt the child, and there’s no evidence that it stretches out the rectum. Some parents say they have to remove some stool from just inside the rectum to make room for the cone. You can insert the cone deeper than you probably think, so that it makes a seal and does not leak water/saline. The cone may go in far enough that the base is flush with the buttocks. Without a good seal, you will not get an effective clean out, and you’ll have a big mess on your hands (and on your floor).

You’ll want to start by flushing the line so you’re not pushing air into the rectum, because that can cause discomfort. Many people say they let the water rush in as quickly as possible to help break up the stool. Others say their child cannot handle the water flowing in that fast, and they slow it down with the help of the roller on the tube. Once all the water is in, parents hold the cone in for anywhere from 1-10 more minutes. This step is important in getting a good clean out. Ten minutes is ideal, but children (and parents) do get tired of sitting in that position for so long, so parents do their best.

Step 3: Then the child sits on the toilet to let all the stool and water come back out, usually 30 to 45 minutes. It’s a good idea for the child to “push” a few times during the enema, especially right at the end, to make sure he got everything out. Some children do not know what pushing feels like if they can’t feel their bottoms. But they can grunt, bear down, yell, laugh, blow bubbles, stretch, etc., and all of those things can be effective. At the end of the appointed time, or when the parent/child feels it is done, have some wipes handy to clean up the bottom, and it’s time to move on to other things.

Frequently Asked Questions

1. Why is water coming out around the enema? Most likely, you’re not holding the cone in far enough. Don’t be afraid. Push it in as far as the child can tolerate. The second most likely answer is that the water is hitting stool inside the rectum. You can always try removing any visible stool before proceeding. But the bigger issue is why there’s hard stool in there. Did you do a clean out before starting the program? Have you been doing it for a while but the solution isn’t strong enough? Consider giving a couple of enemas or making a stronger one to clean out that colon.
2. If my child has diarrhea or a stomach bug, should I skip doing the enema? It is very tempting to do that, but be careful making that decision. Many parents lament that their children swing straight from diarrhea to constipation. You know why that happens? Because they lay off the Miralax or whatever the bowel program is while they are sick. While the bottom of the colon is leaking watery stool, the top of it is filling with hard stool. Giving a child an enema probably won’t make things worse; in fact, it could make the illness a little easier to handle by cleaning out some of that loose stool and flushing the virus out more quickly! You may consider making the solution weaker than normal or just doing a water/saline flush. And when a child has diarrhea, you must always consider whether she has a stomach bug or instead has a blockage of stool that only liquid can get around.
3. How do I know if the enema is effective? It isn’t as easy as it seems it would be. Watch the toilet to make sure you’re getting sufficient stool each night. It should be fairly loose, and muddy in appearance. Watch for signs of constipation. Do the “corn test”–feed the child a food that is easily recognizable when it comes out the other end and see how long it takes to reappear. It should be 48 hours or less, but ideally you would see last night’s dinner in tonight’s enema. Having no stool accidents between enemas is another indication of effectiveness. Of course, a belly X-ray is the most accurate way to tell if the colon has emptied well after an enema.
4. What do I do if I suspect my child is constipated? In the short term, you need to do a clean out. Long term, she probably got constipated for a reason, and consider making the daily enema solution stronger by adding more or different additives.
5. What does it mean if my child has an accident outside of potty time? That’s a tough question, because it could mean a number of possibilities. If the accident happened right after the enema, maybe he didn’t sit on the toilet long enough, maybe he needs to push more before getting off the toilet, or maybe the enema was too strong and overstimulated the bowel. If the accidents happen the next day, the enema probably isn’t strong enough. You’re going to need to experiment a little. If you still give Miralax, maybe it’s time to cut back on the dose. But a good rule to live by with neurogenic bowel is to assume constipation until proven otherwise.

Good Luck! No one does this perfectly the first time (or first several times), and you won’t either. Be patient with yourself and your child as you get used to this new routine. The more practice you have, the easier it will be.

Next: Balloon Enema