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Having a Urostomy a Primer for the Urostomy Patient Cheryl Van Horn, B.S., M.T., C.E.T.N

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Having a Urostomy a Primer for the Urostomy Patient Cheryl Van Horn, B.S., M.T., C.E.T.N Having A Urostomy A Primer For The Urostomy Patient Cheryl Van Horn, B.S., M.T., C.E.T.N. THE CLEVELAND CLINIC FOUNDATION 9500 Euclid Avenue Cleveland, Ohio 44195 PWO 2064 7/99 your questions Having A Urostomy A Primer For The Urostomy Patient Cheryl Van Horn, B.S., M.T., C.E.T.N. c The Cleveland Clinic Foundation, 1991 46 notes 45 For further information, contact: This booklet was written in consultation with: United Ostomy Association, Inc. 19772 Mac Arthur Boulevard Pat Barrett, R.N., B.S.N., C.E.T.N. Suite 200 Irvine, CA 92612-2405 Crina V. Floruta, R.N., B.S.P.A., C.E.T.N. Phone: 949.660.8624 or 800.826.0826 Nancy Heim, Medical Illustrator Fax: 949.660.9262 Barbara J. Hocevar, R.N., B.S.N., C.E.T.N. Email: [email protected] Internet www.uoa.org Eric Klein, M.D. Wound, Ostomy & Continence Judy Landis-Erdman, R.N., B.S.N., C.E.T.N. Nurses Society (WOCN) Drogo K. Montague, M.D. 1550 S. Coast Highway, Suite 201 Laguna Beach, CA 92651 Andrew C. Novick, M.D. Phone: 888.224.WOCN Pamela J. Payne, R.N., B.S.N., C.E.T.N. Fax: 949.376.3456 Leslie R. Schover, Ph.D. Email: [email protected] Internet: www.wocn.org John Sharp, L.I.S.W. Spina Bifida Association of America Marilyn Spencer, R.N., B.S.N., C.E.T.N. 4590 MAC Arthur Blvd Brenda Stenger, R.N., B.S.N., C.E.T.N. North West 250 Washington D.C. 20007 Ralph A. Straffon, M.D. Anthony J. Thomas, Jr., M.D. Phone: 1.800.621.3141 Paula Erwin-Toth, R.N., M.S.N.,C.E.T.N. 44 brochures United Ostomy Association: Sex and the Female Ostomate Sex and the Male Ostomate Sex, Courtship, and The Single Ostomate Ostomy Quarterly (magazine) Ostomy Brochure 43 suggested reading table of contents Introduction ........................................................................ 1 Who has urostomy surgery and why .................................. 2 Jeter, K. These Special Children, Bull Publishing Co., The urinary system ............................................................. 3 Palo Alto, CA, 1980. Types of urostomy surgery ................................................. 7 Kushner, H.S. When Bad Things Happen to Good Wearing a pouch ................................................................. 18 People, Avon Publishers, New York, 1983. What to expect after urostomy surgery .............................. 21 Mullen, B., McGinn, K.A. The Ostomy Book: Living Adjusting to a urostomy ..................................................... 23 Comfortably With Colostomies, Ileostomies, and Daily living ......................................................................... 25 Urostomies, Bull Publishing Co., Palo Alto, CA, 1980. Hygiene and skin care ............................................ 25 Philips, R.H. Coping With An Ostomy, Avery Diet ......................................................................... 27 Publishing Group Inc., Wayne, NJ, 1983. Odor ........................................................................ 27 Physical activity ..................................................... 29 Schover, Leslie For The Female Who Has Cancer And Her Partner, American Cancer Society, 1988. Travel ..................................................................... 30 Intimacy ................................................................. 30 Schover, Leslie For The Male Who Has Cancer And Reimbursement for urostomy supplies ................... 33 His Partner, American Cancer Society, 1988. Frequently asked questions .................................... 36 When to call your urologist .................................... 40 When to call your E.T. nurse .................................. 41 Suggested reading .................................................. 42 Brochures ............................................................... 43 For further information .......................................... 44 42 when to call your E.T. nurse 1. If you have persistent leakage problems. 2. If you have skin irritation in the area of your urostomy pouch. 3. If you have difficulty locating retail sources for your urostomy supplies. 4. To help you locate the nearest U.O.A. support group. 5. If you are having difficulty resuming social and interpersonal relationships. 41 introduction when to call your urologist: Having a UROSTOMY can save your life; but having one also means changes. This booklet will help answer your 1. If you notice extreme changes in the size or color questions about these changes, how to live with them, and of your stoma. how to cope with some of the feelings you may have about them. 2. If you notice a marked decrease in your urine output that lasts for more than one day. Of course, this booklet cannot answer all your questions, so please ask questions of your own. Throughout the booklet, 3. If you have persistent foul odor to the urine not there are blank pages you can use to write down questions as explained by eating asparagus, onions, or garlic or you think of them and the answers when you hear them. by taking certain medications. Some antibiotics and Questions that other patients have asked are answered at the some vitamins can produce unpleasant urine odor. back of the booklet. Remember, there is no such thing as a silly question. 4. If you have a fever and/or pain in the kidney area. As you learn about your disease and urostomy surgery, 5. If you have pain in or around the stoma. it may help you to know that you are not alone. Each year thousands of people in the United States have this surgery- 6. If you have blood in the urine not explained by casual people of all ages (even newborn babies), and in all walks of injury to the stoma. life. Most are enjoying full, healthy, active lives years after their surgery. 7. For regular checkups. In addition to your doctor and enterostomal therapy (ET) nurse, many other people are willing to help you with advice and emotional support. You can contact them through the United Ostomy Association (UOA): 19772 Macarthur Boulevard, Suite 200 Irvine, CA 92612-2405 949.660.8624 800.826.0826 E-mail: [email protected] Internet: www.UOA.org If you would like to talk to a UOA visitor while you are still in the hospital, your ET nurse can arrange this for you. 40 1 Who has urostomy surgery and why? People who need urostomy surgery have a disease, defect, or How will I know if I have a urinary tract infection? injury to the urinary system serious enough that the bladder Along with the increased odor, the urine may change in has to be removed or disconnected from the kidneys. color and become cloudy. If you experience fever, chills, and abdominal cramping or flank pain, call your People of all ages may need this surgery, and approximately urologist immediately. 25% of urostomy surgery is performed on children under nine years old. For them, birth defects account for most urostomy How much fluid is enough, and do coffee and tea surgeries. The most common birth defects are: count as a fluid? 1. spina bifida ( a defect in the spine that affects the nerves The recommended volume of water to be consumed daily is 8 that allow a person to control bladder function and sometimes to 10 glasses. Coffee and tea are not a substitute for water. bowel function.) Drinking plenty of fluids is an easy and effective method of preventing infections and helping the kidneys to 2. exstrophy of the bladder ( meaning there is a failure of function normally. the abdominal wall to come together leaving the bladder open to the outside of the body.) This condition results in constant When cleaning my reusable pouch, I notice a leakage of urine. sandpaper-like crust on the inside of the pouch. For adults, the most common reasons for urostomy What is this? surgery are: The “sandpaper crust” is probably crystals from strong alka- line urine that cling to the pouch wall. Sometimes they are 1. benign or malignant bladder disease sharp enough to scratch the stoma and cause bleeding. Soak- 2. the effects of spinal cord injury. ing the pouch in vinegar will almost always dissolve them. It is a good idea to increase your fluid intake and to change the The reason for your urostomy surgery is _____________ pouch more often if this happens. _________________________________________________ Why do I have to connect to bedside drainage _________________________________________________ at night? _________________________________________________ You don’t have to but while asleep, most persons produce more urine than the typical urostomy pouch can hold. You could train yourself to awaken at intervals during the night and empty the pouch in the bathroom. Most persons with urostomies find attaching the pouch to an overnight drain tube is far more convenient and restful. 2 39 The Urinary System Why should I take ostomy supplies if I go to Knowing what your urinary system looks like and how the hospital? it works will help you understand this surgery and how The hospital may not carry the exact type of supplies you need. your urinary system will function after the operation. You may arrive when access to the ostomy supplies is limited. The system includes two kidneys, two ureters, one Every person with an ostomy should carry his or her own bladder, and one urethra. (See Figures 1A and 1B.) spare equipment. The two kidneys are lima bean-shaped and somewhat larger than your fist. They are located toward the back When I empty the pouch, it splashes. How do I of the body on either side of the spine just above the hip bones. The kidneys filter blood through millions of prevent soiling myself? tiny filters called nephrons, which flush out the body’s Float a few sheets of toilet paper in the commode before waste products and return purified blood to the blood- emptying the pouch. Another method is to flush while stream. The kidneys maintain the balance of water and draining the pouch. minerals in the body as well. How much equipment should I take when Each kidney empties the waste (now called urine) into going on a trip? a narrow muscular tube called a ureter. The muscular Take twice the amount that you usually need for that time tube (ureter) squeezes the fluid through a one-way valve period.
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