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Parents

  • Children who have Spina Bifida usually have damage to the nerves that control bowel and bladder function. Early evaluation of the kidneys and bladder is very important in order to prevent kidney damage.
  • Clean intermittent catheterization (CIC) is the central treatment to prevent damage and give the child social continence.
  • During the first years of life, it is important to avoid constipation. Proper nutrition with adequate fiber and fluids will help.
  • Since the bladder is usually affected by Spina Bifida, your child could have problems storing urine or emptying his or her bladder. Know the signs of possible urinary tract infection, and contact your health care provider if you think your child may have one.
  • Teach your child to participate in his or her bowel and bladder management program by removing and replacing clothing, inserting suppositories, and assembling supplies. Eventually your child will take over these responsibilities.

Recommended Reading for Parents

Bowel Continence and Spina Bifida, by Susan Leibold, et. Al.
Health Guide for Parents of Children Living with Spina Bifida, Edited by the SBA Editorial Review Board


Teens

  • Continue to have routine testing of their kidneys and bladder to monitor growth and function. A change in bladder function, such as increased incontinence or urinary tract infections, can signal problems from a tethered cord.
  • Establish and refine routines for successful bowel and bladder management.
  • Self-catheterization skills could be included in your Individualized Education Program (IEP). Some teens are not able to perform self-catheterization through the urethra and have surgery to create a catheterizable stoma in the belly button or on the side of the abdomen.
  • Develop a schedule or other type of reminder system for cathing or taking medications. Programming a wrist watch can help, as can setting an alarm on a cell phone so that you can “take the call.” This avoids possible embarrassment caused by needing to leave at certain times to take care of personal needs.
  • Start using a method of organizing health care information, such as the one found in the Heath Guide for Adults Living with Spina Bifida publication, available from SBA.

Recommended Reading for Teens

Bowel Continence and Spina Bifida, by Susan Leibold, et. Al.
Health Guide for Parents of Children Living with Spina Bifida, Edited by the SBA Editorial Review Board
Physical Disabilities: The Ultimate Teen Guide, by Denise Thornton


Adults

  • See a health care provider and urologist every year. Keep track of unexpected changes in your bladder program. These changes may be signs of a problem.
  • Monitor your level of dryness and any problems with catheterization. Note any changes and discuss them with your health care provider. Changes may indicate tethered cord, urinary track infection, or a bladder stone.
  • Watch out for symptoms of a urinary tract infection:
    • Chills or fever
    • Cloudy or dark urine
    • Blood in urine
    • Nausea or vomiting
    • Back pain
    • Change in urinary continence
    Let your health care provider know if you experience any of these symptoms.
  • Take care of yourself and follow through with your bowel program

Recommended Reading for Adults

Bowel Continence and Spina Bifida, by Susan Leibold, et. Al.
Health Guide for Parents of Children Living with Spina Bifida, Edited by the SBA Editorial Review Board
Physical Disabilities: The Ultimate Teen Guide, by Denise Thornton


Resources

Organizations that Can Help

Bowel and Bladder Continence Supply Vendors

SBA has researched vendors which provide bowel and bladder care products. These vendors offer national shipment and deal with Medicare and Medicaid. We also recommend that you research options that may be available in your region of the country for your insurance options. A vendor listing does not imply endorsement of products. This listing is for informational purposes only.

180 Medical
6000 NW 2nd St Ste 200
Oklahoma City, OK 73127
887-688-2729
www.180medical.com

Heartline Medical
PO Box 55
Hampstead, North Carolina 28443
866-791-4261
www.heartlinemedical.com

Achieve Comfort Medical Equip. & Supply
370 S Fairfax Ave
Los Angeles, CA
323-852-6900
800-517-2477
323-852-6904
www.achievecomfortmed.com

Home Care Together
2536 Plover Road, Suite One
Plover, WI 54467
877-655-0855
www.homecaretogether.com

Advocate Medical Services, Inc.
1202 Tech Blvd. #105
Tampa, FL 33619
813-623-1028 / 877-968-7267
www.advocatemed.com
juliov@advocatemed.com

Kleins Orthopaedic and Medical supplies
2015 State Rd.
CuyogaFalls,OH 44223
330- 926-5949
Enterostomal therapist on-site: Sally Thompson
sthompson@kleinsrx.com

CCS Medical
2105 Newpoint Place Suite 600
Lawrenceville, GA 30043
888-724-4357
www.ccsmed.com

Southwest Medical
513 W. Thomas Road
Phoenix, AZ 85013
Toll Free: 800-236-4215
Local: 602-230-9493
Fax: 602-279-0952
www.southwestmedical.com

Express Medical Supply, INC
218 Seebold Spur
Fenton, MO. 63026
Phone 800-633-2139
Fax 800-633-9188
www.exmed.net

UTI Medical
579 Ravine View Dr.
Akron, OH 44303
877-786-7884

EveryDay Medical
139 Fulton Street, Suite 814
New York, NY 10038
800-963-0633
www.everydaymedical.com

UroMed
1095 Windward Ridge Pkwy. , Suite 170
Alpharetta, GA 30005
800-841-1233
678-356-0188
800-208-0021
www.uromed.com

Please Note: These resources and information are reviewed periodically. They do not represent all of the resources currently available on a topic. If any updates are needed or if you would like to recommend a resource, please email the Resource Center at sbaa@sbaa.org.