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Total Pelvic Exenteration

This information describes your  total pelvic exenteration surgery at Memorial Sloan Kettering Cancer Center (MSKCC) and what to expect afterward.

Introduction

This booklet describes a total pelvic exenteration. It is a treatment for cancer that involves three systems: the urinary system, the gastrointestinal system, and the gynecologic system. The booklet includes information on:

  • Changes that will happen to your body
  • What will happen while you are in the hospital
  • Preparing to go home
  • Questions about changes in your life resulting from this surgery
  • Resources to help

The Operation

This operation is called total pelvic exenteration because it removes the organs in your pelvic cavity. Three systems are involved: the gastrointestinal system, the urinary system, and the gynecologic system. (See Figures 1, 2, and 3.) During the operation, part of your large intestine (colon) will be removed. Your rectum and anus will also be taken out. This means you will need a new place for stool to leave your body. The end of the remaining intestine will be brought outside on your abdomen. This is called an ostomy. The ostomy is called a colostomy. The opening itself is called a stoma. A pouch will cover the stoma to collect stool. You will be taught how to care for the stoma as you recover. You will also get another booklet that answers questions you may have about living with an ostomy.

Your bladder and urethra will be removed. This means you will need a new place for urine to leave your body. Your kidneys and ureters will be reconnected to a new urinary collection system. It is called a urinary diversion. There are two types of diversions. Each opens onto the abdomen. This opening is also called a stoma. With one type, the urine drains into a bag that you place around the stoma. This is called an ileal conduit. With the other, you will place a drainage tube in the stoma several times a day to drain the urine. This is called a urinary pouch. Your doctor will discuss these with you. Your nurse will give you a booklet describing the diversion you will have.

Your ovaries, fallopian tubes, and uterus will be removed. All or part of your vagina might also be removed. In some cases, the vagina can be reconstructed. Ask your doctor if this is an option for you. A plastic surgeon will do it after the rest of the operation is done. A new vaginal canal is created from muscles and skin in other areas of your body. Your nurse will tell you about the care of your new vagina. If you do not want reconstruction, the area can be closed or covered with a flap of skin.

If your vagina is left, you should be able to have intercourse. If you can have reconstruction, you should be able to resume having intercourse when the area heals. If you cannot have reconstruction, remember that sex can include other forms of intimacy. Ask if your clitoris will be removed. Ask how much feeling you will retain in the vaginal area. Your doctor and nurse will tell you what to expect. For example, sensations may not be the same as they were before your surgery. You might like a referral to our Sexual Health Program. A therapist can assist you regarding these concerns.

Figure 1 Figure 1 Figure 2 Figure 2 Figure 3 Figure 3

Preparation

You will likely see many doctors and nurses before the operation. Each specialist will describe his or her role in your care and answer your questions. You may see surgeons from other services who will work with your surgeon to complete the operation. You may see a psychologist who works with women having this operation. You may also see a certified wound, ostomy, and continence nurse, also known as a (CWOCN). The CWOCN will talk to you about the ostomy you will have. It might help you to write down questions as you think of them. Take your list with you when you have appointments. You might also ask to speak with someone who has had the operation. Your social worker might be able to arrange that.

Your intestines, also called bowels, must be clean before surgery. The cleaning lowers the level of bacteria in your intestine. You will also be given antibiotics to take by mouth. The bowel cleaning and antibiotics help to prevent infections after surgery. You will get a fact card on your bowel preparation. The nurse will review it with you and answer any questions you have.

After Surgery

Figure 4: You will have a bag over the stoma if you have an ileal conduit. You will have a
catheter if you have a urinary pouch. Figure 4: You will have a bag over the stoma if you have an ileal conduit. You will have a
catheter if you have a urinary pouch.
When you wake up, you will be in the Post-Anesthesia Care Unit (PACU). You will have many tubes, drains, pouches, and bandages on your abdomen. (see Figures 4). They may include:

  • A Jackson Pratt drain or “JP” to drain fluid from around an incision or wound. The drain is taken out when the incision stops draining.
  • A catheter or drainage tube to drain urine from your urinary diversion.
  • A second drainage tube at the site of the incision. This serves as a safety catheter. It is placed in case the urinary diversion catheter gets blocked or comes out. It is clamped shut and usually has a “Do Not Touch” sign.

Please don't be alarmed when you first see them. Your abdomen will become more swollen over the next few days and then the swelling will go down. Most of the drains and tubes will be removed over the next days to weeks. In about three to six weeks, most women will have one stoma for a urinary pouch or an ileal conduit and a second stoma for stool (see Figure 5).

Figure 5 Figure 5 You will also have:

  • Bandages and drains on your upper inside thighs if you had reconstruction of your vagina
  • An intravenous (IV) to give you fluids
  • A PCA (patient controlled analgesia) pump to give you pain medicine
  • Compression boots on your calves to help blood circulate. These will stay on whenever you are in bed until you are discharged

You will need to cough, deep breathe, and use the incentive spirometer 10 times every hour while you are awake. You will be taught how to do these before your operation. Practice before your operation. That will make it easier for you to do them. The nurses will ask you to begin doing them when you arrive in the PACU.

Most women stay overnight in the PACU. You will be transferred to an inpatient room the next day. You will have pain at your incision site and your abdomen. Your pain will be managed with the PCA pump. A PCA is a pump that you control yourself; it gives you pain medicine through your IV. Your nurse will show you how to use it.

You will not be able to eat or drink for a few days after the surgery. Your doctor will first allow you to drink clear liquids such as tea, broth, and Jell-O®. Your diet will slowly be advanced to solid food.

You will get out of bed soon after you arrive in your inpatient room and will begin walking in the hall. Someone from the nursing staff will help you until you are able to walk on your own. You will be taught how to get out of bed in a way that lessens the pain to your incision. You may feel very tired and not want to walk. However, walking will help you recover from the operation. If you take pain medicine before getting out of bed, your incision will hurt less. If you had vaginal reconstruction, you will not be able to sit for 6 to 8 weeks. You can lie on your back or side or you can stand.

You can expect bleeding from almost any of the incisions or around the drains. You may also have some discharge and tenderness for a few days. Your nurse will show and tell you what is normal and expected as he or she cares for you. You will also begin to learn how to care for the ostomy and incision lines. Most patients are in the hospital for 7  to 10 days.

Some of the tubes and drains may be removed before you are discharged from the hospital. If you have a stapled incision, the staples are usually taken out before you leave the hospital. Some women will have them removed at the first follow-up visit. If you go home with the drains, your nurses will teach you how to care for them.

Going Home

When you are discharged from the hospital, you may still have drains in place. Ask your nurse or doctor when they will be removed. You will be given supplies you need to care for yourself for the first month. You will then order your supplies from an outside source. Your discharge nurse case manager will arrange to have a visiting nurse see you at home. This nurse will help you while you are learning to care for your incision, ostomy, and urinary diversion. The stomas will not be visible under most of your clothes.

As time goes on, you will get stronger. You will be more confident in caring for your incision, urinary diversion, and ostomy. Your appetite and energy will improve. Before too long, you will be able to resume most of your normal activities.

Support

This is a major operation, which will change your body, and it will probably take time for you to adjust to these changes. You may feel frightened, angry, or worried. You may have questions or fears about how this surgery will impact your sexuality. These feelings are normal and occur in most patients.

Each person adjusts in her own way. For some, coming to terms with a changed body image will happen over several months. For others, it may take longer. Please know that we have many resources to help you. Your doctors and nurses will answer your questions. We also have social workers, psychologists, psychiatrists, and CWOCNs who have helped many women through this adjustment. You might like to see someone from our Sexual Health Program who deals with issues like these. We also have clergy available for spiritual support. We may be able to arrange for you to meet with another woman who has had this surgery, and who can talk with you and answer questions.

Just as your body will heal, and you will be able to resume your normal activities, you will also learn to adapt to the changes that at first seemed overwhelming. Every new situation requires time to adjust. Loss of a body part, external or internal, often triggers a time of grieving. Remember that we have many resources to guide you to recovery.

Support Groups / Staff Members:

If you would like more support or information about intimacy after cancer, please speak with your nurse or doctor. You can also call The Female Sexual Medicine and Women's Health Program for more information and an appointment.

Sexual Medicine and Women's Health Program (646) 888-5076

The Sexual Medicine and Women's Health Program provides services at:

  • 160 East 53rd Street - Rockefeller Outpatient Pavilion
  • 300 East 66th Street - Evelyn H. Lauder Breast Center and MSKCC Imaging Center

If you are having persistent pain or incontinence call your nurse or doctor. He or she can give you a referral to Physical Therapy for an evaluation.

Physical Medicine and Rehabilitation Center (646) 888-1900

515 Madison Avenue, 4th Floor (53rd - between Park & Madison Ave)

New York, NY 10022

To make an appointment with a psychiatrist or psychologist, call 646-888-0200.

To speak with a social worker, call 212-639-7020.

To see a CWOCN, ask your doctor or nurse to contact that nurse and arrange a visit.

Resources:

Bladder Support Group at MSKCC

  • Second Thursday of each month
  • To register call 646-888-4740
Women's Cancer Network: Gynecological Cancer Foundation (GCF)
401 N. Michigan Avenue
Chicago, IL 60611
(312) 644-6610

www.wcn.org

United Ostomy Association, Inc. (UOA)
19772 MacArthur Boulevard, Suite 200
Irvine, CA 92612
(800) 826-0826
 
Wound, Ostomy, Continence Nurses Society
Suite C
Mt. Laurel, NJ 08054
This is a professional nursing society. Members are specialists in the care of patients with wounds, ostomies, and continence problems
(888) 224-WOCN (9626)
 

Glossary

Abdomen - The part of the body below the ribs and above the pelvis

Antibiotics - Medicine used to treat infections

Bladder - A sac in the pelvis that holds urine

Catheter - A small tube that can be used to drain fluid from an area such as the bladder

Colostomy - A surgical procedure that brings one end of the colon outside the abdomen, creating a new xit for stool

Compression boots - Boots that wrap around the lower legs and gently squeeze and relax to aid circulation

CWOCN - A nurse who manages wounds, ostomies, and continence problems

Discharge - The release of fluid from a wound or opening

Fallopian tubes - Slender tubes between the ovaries and the uterus through which eggs travel to the uterus

Gastrointestinal system - The system that includes the stomach and intestines

Gynecologic - The system that includes the female reproductive organs

Ileal conduit - The implantation of the ureters into a part of the small intestine called the ileum

Ileostomy - A surgical procedure that brings one end of the ileum outside the abdomen, creating a new exit for stool

Ileum - The last section of the small intestine

Incentive spirometer - A device that measures the amount of air breathed into the lungs

Intravenous (IV) - Through a blood vein

Jackson Pratt drain - A type of drain used after surgery to let fluid escape

Kidneys - The organs where liquid waste from the body is turned into urine

Ostomy - A new opening such as a colostomy or ileostomy

Ovaries - The female organ that produces ova (eggs) and the hormones estrogen and progesterone

PACU - Post-anesthesia care unit; a recovery room

Patient-controlled analgesia - A method that lets a patient control the amount of pain medicine that goes into the body

Pelvic exenteration - An operation that removes many organs in the pelvis.

Pelvis - The part of the body that is surrounded on three sides by the hip bones and spine

Post-Anesthesia Care Unit - Recovery room

Stoma - An opening from within the body to the outside

Ureters - Tubes that carry urine from each kidney to the bladder

Urethra - The tube that carries urine from the bladder to the outside of the body

Urinary diversion - The creation of a new pathway for urine to leave the body

Urinary system - The system that includes the kidneys, ureters, bladder and urethra

Visiting nurse - A nurse who travels to patients' homes