Genetics Northern California

Bowel concerns

Neurogenic Bowel
For persons with neurogenic bowel, the bowel cannot tell the brain that it is full, and the brain cannot tell the bowel to empty completely or at an appropriate time. This condition is called "neurogenic" bowel, because the nerves ("neuro-") are the source ("-genic") of the problem. This condition is similar to "neurogenic bladder", described in detail under bladder concerns.

Every part of the body needs nerves to function properly. Nerves carry signals from the various parts of the body to the brain and back again. This allows the body and brain to communicate with each other. If these signals are interrupted, they may send the wrong message, or none at all.

For most people with spina bifida, the nerves attached to the bowel do not function properly. A neurogenic bowel affects people with spina bifida in several important ways. It can cause bowel incontinence and/or constipation, and contribute to the development of urinary tract infections.

Bowel incontinence
Bowel incontinence refers to a lack of control over bowel movements. The person with a neurogenic bowel cannot tell when the bowel is full, or control the muscles that determine when the bowel will empty.  Without treatment, a person with bowel incontinence has to wear diapers. But there are alternatives. The main treatment for people with neurogenic bowel is establishment of a regular bowel management program, which often includes the use of medications to help promote a healthy and socially acceptable routine.

Constipation refers to stool that is relatively hard and dry. With neurogenic bowel, the involuntary, sequential squeezing action of the colon (called peristalsis) may be slowed and uncoordinated.  The more slowly that the stool moves through the digestive tract, the more water is reabsorbed into the body, and the harder it becomes to pass the stool (have a bowel movement).

Many people with spina bifida experience constipation, because the stool moves too slowly through the digestive tract.  Not only is hard, dry stool difficult to push out, it can actually clog the intestines. When constipation is severe, liquid stool from above may force its way past the blockage, and the person may experience diarrhea, even though the underlying problem is constipation.

Constipation may cause abdominal cramping for some people. Chronic constipation can lead to hemorrhoids, rectal prolapse (when a portion of the rectum protrudes from the anus), and general deterioration of bowel tissue. It can also contribute to the development of urinary tract infections (UTIs). Therefore, the prevention of constipation has important physical health benefits.

Developing a bowel program
Establishing a regular bowel program is essential for individuals with spina bifida who have neurogenic bowel. Having a regular bowel program usually consists of both of the following:

  1. A product(s) to promote emptying the bowel.  
    These may include fiber, fluids, stool softener, lubricant, bowel stimulant. enemas, or manual techniques to remove stool.

  2. A regular time (morning/afternoon/evening) to sit on the toilet, preferably after a meal. 
    It is possible to "train" the bowel to empty at a designated time every day. The first step is to choose the time of day that works best with your schedule. Plan to stick to this time - consistency is the key. It helps to choose a time directly following a meal in order to take advantage of the natural intestinal movements that happen by reflex when a person eats. For most people, the best time will be right after breakfast or right after dinner.

When stooling, sit on the toilet, if possible, to take advantage of gravity. Try to push out stool by bearing down, but without excessive straining. For example, pressing on the thighs with the hands can help push the stool out. Always make sure that the feet are firmly supported on the floor, using a footstool or box if necessary. The total time for attempting a bowel movement should be no more than 20 minutes, to avoid excessive pressure on the buttocks/thighs, which could lead to pressure ulcers.

How to begin training the bowel for timed evacuation

Establishing timed toileting through suppository use.
Insert a suppository (glycerin or Dulcolax) into the rectum every day at the same time, right after a meal. The suppository should be inserted about one to two inches into the rectum and must stay there until it dissolves. After 20-30 minutes, or sooner if the sensation to defecate occurs, sit on the toilet and begin pushing. This routine should be followed daily for the next 30 days.

After one month, the suppository should be given only every other day, and after two months, every third day. However, it is important to continue sitting on the toilet and pushing at the same time every day, whether a suppository is used or not. The idea is to gradually eliminate the need for suppositories.

By the end of the third month, if the above program is followed strictly, the bowel should be trained to empty at the same time every day. Some people follow this same routine but use an enema instead of suppositories as a means of training the bowel for timed evacuation.

Additional Bowel Aids

Stool softeners
These medications produce softer stool by increasing the amount of water absorbed into the stool as it moves through the large intestine. When stool is soft, it is easier to expel. One examples is docusate sodium (Colace).

A laxative is any substance that causes a person to have a bowel movement. Different laxatives work in different ways, and some are much stronger than others.

Mineral oil is an example of a lubricant laxative. It lubricates the wall of the intestine, preventing water from being reabsorbed, and allowing the stool to pass along more easily.

Miralax (polyethylene glycol), lactulose and glycerin are examples of osmotic laxatives. They cause water to be drawn into the bowel, stimulating bowel movements.

Stimulant laxatives chemically cause the bowel to contract and push the stool along more quickly. Examples of stimulant laxatives include:

Bisacodyl (Dulcolax tablets or suppositories, including the Magic Bullet)
Cascara sagrada (tablet or liquid forms)
Magnesium citrate (citrate of magnesia)
Senna (Senokot)

Other bowel management procedures

Manual disimpaction
This technique is useful when stool has made it down to the rectum, but there is not enough intestinal movement to push it completely out. Lubricate a gloved finger (with water-soluble lubricant) and carefully insert it to remove stool from the rectal vault. If a person has become constipated this may be helpful for passing the hardened stool.

Digital stimulation
Like manual disimpaction, this technique involves using a gloved and lubricated finger to help remove stool from the bowel. The difference is that the finger is carefully swept around the wall of the rectum for a few minutes at a time. This stimulates the wave-like motion of the bowel (called peristalsis) which propels the stool down from above. This technique can be used by a caregiver while the person lays on their side or by the person themselves while sitting on the toilet.

An enema can be an effective way to bring stool out of the bowel. It involves inserting a tube into the anus and instilling liquid (with or without medication) through the tube into the bowel. The liquid is then allowed to come back out, hopefully flushing out any stool that was present in the lower bowel.

MIC Catheter
The MIC catheter is a specially designed enema tube with an inflatable balloon on one end. An enema bag is filled with a mixture of normal saline (salt water) or tap water. The balloon end of the catheter is lubricated with water-soluble jelly, and carefully inserted into the anus.

Once the catheter is inserted to the correct level (determined according to each individual's size), the balloon is inflated with air from a syringe. The filled balloon forms a plug preventing the catheter from falling out or anything from leaking out. The person then sits on the toilet, with feet stabilized on the floor or a stool or box, while the MIC catheter is used to slowly fill the bowel with water from the enema bag. This should take approximately three to five minutes.

When the enema bag is empty, the balloon should be deflated slowly. Once the balloon is deflated, the bowel contents (water and stool) will empty into the toilet. The bowel often empties more completely if the person helps push by placing his or her hands on the thighs and bearing down.

A final thought about bowel care
Even with the most conscientious efforts at maintaining a regular bowel program, there can be setbacks. These can be caused by physical stress such as illnesses, surgeries, changes in medication, vacations (e.g., different foods, different environment, etc.), or changes in work or school routine. They can also be caused by emotional stress.

Furthermore, because each individual is unique, what works for one person may not work for another. It is important not to become discouraged. The Spina Bifida Clinic team members are available to help you with any problems or concerns.

Bowel surgery
The ACE-Malone and cecostomy surgeries are recommended only when non-surgical methods have not been successful in achieving bowel continence.

ACE stands for "antegrade continence enema". Instead of filling the bowel with fluid from below, these surgeries allow the bowel to be filled from above. A small opening (stoma) is surgically created on the surface of the abdomen (belly). The appendix (or section of the intestine) is used to form a "tunnel" between the stoma and the bowel (usually at the "cecum" - the site where the small and large intestines meet). This allows a catheter to be placed into the stoma, down through the tunnel, and into the bowel.

The other end of the catheter is attached to an enema bag filled with normal saline or tap water just like with the MIC catheter. The procedure is done while the person is sitting on the toilet, with feet stabilized on the floor or a stool or box. The enema bag is emptied through the catheter and into the bowel. The pressure of the water pushes the stool through the large intestine and out into the toilet. Leaking from the stoma is prevented by a one-way valve which lets the catheter pass in, but prevents stool from flowing out once the catheter is removed.

Note: the above procedure can be done using a plastic external cecostomy tube rather than using the appendix or intestine. The advantage is that the tube may be placed using a local anesthetic in the hospital. The disadvantage is that instead of a small stoma, an external tube is visible on the skin of the abdomen.