The bowel program.  One of the most frustrating aspects of living with spina bifida.  Finding out what works best for you can be a long path of trial and error.

Diet Alone

People who have more ability to feel the need to have a bowel movement may be able to have a program that consists of monitoring their diet to avoid becoming overly constipated or loose.  Depending on the desired effect, you would choose foods that helped bulk up or soften the stool.  Wheat germ and flax help bulk up the stool, while fruits such as raisins, apricots, and prunes can help keep things moving along.  Stephanie Johnson provided this great recipe she uses with her son.

Homemade Fruit-eze

Blend the following in a blender for 2 minutes. (I use one of those magic bullet blenders- it’s quicker and less mess)

1/3 cup raisins

6 prunes

1/2 orange (peeled)

1/2 unpeeled apple

2 TBSP prune juice

2 TBSP orange juice

(I also add 1 tsp of benefiber to it before mixing)

Store in the fridge. Use 1 teaspoon a day and adjust as needed.

Several times I haven’t had oranges so I used fresh cherries, pears or peaches. Apricots would go well, too. I’ve also used white grape juice instead of orange juice. I don’t think it really matters what you mix with it as long as the prunes, raisins and prune juice are in there!

Herbal Remedies
Liquid senna is considered an herbal remedy by many, but doctors often prescribe it as a good choice for long term use.  It can take a while to get the dosage right, but a small child may take 1tsp in the morning and have a bowel movement by late afternoon or evening.  You can order liquid senna online through Westbury Pharmacy.

Enemas and Suppositories
For people who are uncomfortable taking a laxitve or stimulant, fleet enemas or suppositories can be used to stimulate the bowel and start things moving.

Cone Enema
See The Video Here
For many people, a program of irrigating the bowel with a cone enema is a good choice.  It is possible to clean out up to two days worth of stool with this method.  We recommend using the ConvaTec Visi-Flow Irrigator W ith Stoma Cone with a small amount of lubricant on the tip.

Step 1
Wash your hands with soap and warm water.

Step 2
Make sure the cone irrigation tip is attached to the tubing.

Step 3
Unsnap the top of the bag. Put 20cc per kilogram or 100cc per 10 pounds (of child’s weight) of lukewarm water in the bag. For example, a 30lb. child would need approximately 300cc of water in the bag. Tap water is fine.

Step 4
Hang the bag 5-6 feet high. Your bathroom design will determine the best way to do this. You can put the bag on a clothes hanger and hang the hanger over your shower rod. If the shower is too far away from the toilet, you can hang the bag on a hook in the wall. If neither of these works, you can get another person to help you by holding the bag up in the air.

Step 5
Flush water through the tubing by rolling the paddle wheel up with your thumb. Rolling the wheel up unclamps the tubing and allows water to flow through. After flushing, reclamp the tubing by rolling the paddle wheel down.

Step 6
Open your lubricant and apply it generously to the tip of the cone.

Step 7
Set your child on the toilet, or have them lay on a towel or waterproof mat on the floor. If your child is on the toilet, they will have to lean forward so that you can insert the cone into their rectum. Hold the cone in place and encourage your child to help you hold it. This will help them practice so that they will be able to do this by themselves in the future.

Step 8
Roll the paddle wheel up so that the tubing unclamps. The water should be running relatively fast. If the child seems uncomfortable, or if there is leaking or spraying around the cone, roll the wheel down to pause or slow the flow of water until you can continue. Allow the water to run until the bag is empty. If the child is lying on the floor, you will need to transfer them to the toilet before taking out the cone.

Step 9
Remove the tip of the cone from the rectum.

Step 10
Massage the abdomen in a clockwise direction for about 5 minutes.

Step 11
Have your child sit on the toilet for approximately 30 minutes. The exact amount of time will depend on how long it takes for the water and stool to empty from your child’s body. While they are on the toilet, encourage them to bear down, make grunting noises, laugh, or do anything that might help the stool come out.

Step 12
Clean your child’s bottom and dress them in a diaper or pull up. There may be some leakage of stool the first few times you do this. Wash the cone tip with soap and water. Store the cone and bag in a clean and dry environment.

Begin the irrigation program by doing it once every night. Although some people continue to need to clean out their bowels daily, when your child starts becoming clean all day, you may be able to decrease to once every other night.  Most people prefer to clean out the bowel at night. Dinner digesting helps move things along at this time of day. Also, even if there is any leakage during the night, by morning, the child is often clean enough to wear underpants for the rest of the day.  If your child’s feet do not touch the floor, put something underneath them to support their feet and legs. This helps the stool come out and makes them more comfortable.  If you have a lot of trouble with leaking, you may need to stop the flow of water and allow some of the stool to come out before finishing the bag. Sometimes hard stool blocks the water from entering the colon and needs to be removed before you can continue.  If your child has been having problems with constipation, you may not be able to get much stool out the first few times you use the irrigation program. Try to soften their stool by changing their diet or giving them Miralax.  If tap water alone does not work for you, you may need to add a squirt of mild soap- such as Ivory liquid, castille soap, or baby shampoo- to the water in the bag.  If water does not work at all, you may need to replace the water in the bag with the contents of a fleet enema.

The MACE or ACE procedure (about which you can find more information on our “surgeries and procedures page) allows clean out of the stool from above the colon.  The end result of the procedure is an opening, or stoma, in the abdomen, through which a catheter can be inserted.  An enema solution is then run through the catheter.  You can use a Fleets enema or a saline solution to flush out the colon.  It can take anywhere from 15 to 45 minutes for a clean out, and most people need to do it every day.

6 Responses to “Bowel”

  1. Sara says:

    Hi. I just now got a chance to see the Cone Enema Video and it says that it is no longer available. I would really like to see this video. I heard alot about it and it would be nice to actually SEE someone perform the procedure. Is there anyway you can get it on the site again? Or send it to me? I would appreciate it. Thanks.

  2. Annie Beth says:

    The link was broken somehow. I re-linked it, and now it works.

  3. Jacqui Morel says:

    It is me again. So, I understand that it can take awhile to get the cone enema to work but I just want to make sure I am dong everything right.
    We have very few days with no poop and some days with almost little dry poops. Some nights we get alot out and the next day we are clean. Some nights we hardley get anything out and that is when we get the dry poop. We use 300cc’s of water and put in 4 ml of glycerin. Any suggestions?

  4. Annie Beth says:

    Hmm. The only red flag I hear is the dry poops. If you are having any constipation, then it won’t wash out well and then you will end up with poop the next day. The water sounds right- i’ve never used glycerin so I’m not as familiar with those measurements. If you are very sure that you have the right consistency (and that you are taking the medicine at the same time each day, all at one time, in something like juice), then it could just be taking a while for his body to get used to emptying out at the same time every day. Some people are able to do every two days, so I wonder if that would be a better schedule for his body. Otherwise, keep trucking and see if it clicks. Also watch for food triggers that could change his bowel habits,

  5. Jacqui Morel says:

    Thanks for getting back to me. I forgot to mention that after we get him off the potty we are having a blow out within about 15 min in his diaper. I have tried leaving him on longer, even up to an hour, and it still happened.

    We give him a cup of juice in the mornings with a probiotic VSL#3, prescribed by his GI, and some benefiber. The GI wants us to give him 25 grams of fiber a day, but we are findng this very hard to do.

    The glycerin goes into the water in the enema bag. We tried suppostories before the enema and they didn’t work because he has no anal wink. so, I was using them up in the enemas.

    He is allergic to milk but loves to eat mac and cheese, do you think maybe this is causing him issues.

  6. Yvette says:

    I just watched your enema video. Then I went to your website and saw that your daughter had the MACE procedure. What made you switch from just the enemas to the MACE?

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