About Your Total Pelvic Exenteration Surgery and Wet Colostomy

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This guide will help you get ready for your total pelvic exenteration surgery with a wet colostomy at Memorial Sloan Kettering (MSK). It will also help you learn about your wet colostomy and understand what to expect during your recovery.

Read through this guide at least once before your surgery and use it as a reference in the days leading up to your surgery.

Bring this guide with you every time you come to MSK, including the day of your surgery. You and your healthcare team will refer to it throughout your care.

About Your Surgery

During your total pelvic exenteration surgery, organs from your urinary, gastrointestinal, and gynecological systems will be removed and a wet colostomy will be created. You may be having this surgery because you have cancer in your gynecological, urinary, or gastrointestinal systems.

About Your Urinary System

Figure 1. Your urinary system

Figure 1. Your urinary system

Your urinary system makes urine (pee) and gets it out of your body (see Figure 1).

  • Your kidneys clean the toxins out of your blood and make urine.
  • Your ureters are tubes that carry urine from your kidneys to your bladder.
  • Your bladder stores urine until you feel the need to urinate.
  • Your urethra is a tube that carries the urine in your bladder out of your body when you urinate.
    • In women, the urethra is very short. It’s located above the vagina.
    • In men, the urethra is longer. It passes through the prostate gland and the penis.

During your surgery, your bladder and urethra will be removed. This means you will need a new place for urine to exit your body. This will be the urinary diversion part of your stoma. For more information about your stoma, read the “About Your Wet Colostomy” section.

About Your Gastrointestinal System

Figure 2. Your gastrointestinal system

Figure 2. Your gastrointestinal system

Your gastrointestinal system digests (breaks down) the things you eat and removes solid waste from your body (see Figure 2). It’s made up of your mouth, esophagus, stomach, small intestine, large intestine (colon), rectum, and anus.

During your surgery, part of your colon, your rectum, and your anus will be removed. This means you will need a new place for stool (poop) to leave your body. This will be the fecal (stool) diversion part of your stoma.

About Your Gynecologic System

Figure 3. Your gynecologic system

Figure 3. Your gynecologic system

Your gynecologic system is also called your reproductive system. It’s made up of your ovaries, fallopian tubes, uterus, and vagina (see Figure 3).

During your surgery, your ovaries, fallopian tubes, and uterus will be removed. This means that you won’t be able to bear children. All or part of your vagina may also be removed.

If all or part of your vagina is being removed, your doctor will give you more information. For some people, the vagina can be reconstructed (rebuilt) as part of the surgery. This is called vaginal reconstruction.

  • If you’re having a vaginal reconstruction, you will meet with a plastic surgeon to talk about this part of your surgery. If you’re having a vaginal reconstruction, your plastic surgeon will create a new vaginal canal using muscles and skin from your abdomen (belly) or inner thighs.
  • If you’re not having vaginal reconstruction, your vaginal opening will be closed or covered with a flap of skin.

If you have vaginal reconstruction or plastic surgery on your perineum (the area between your legs), you won’t be able to sit for 6 to 8 weeks after your surgery. Your nurse will help you find positions that are comfortable for you.

Vaginal Intercourse After Surgery

If no part of your vagina is removed during your surgery, you will probably be able to have vaginal intercourse once you have healed after surgery. If you have vaginal reconstruction, you may able to have vaginal intercourse when the area heals. Your surgeon will give you more information.

If your vagina is removed and you don’t have vaginal reconstruction, you won’t be able to have vaginal intercourse (vaginal sex). But, remember that sex can include other forms of intimacy. Ask your surgeon if your clitoris will be removed and how much feeling you will still have in your 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 will get a referral to our Female Sexual Medicine and Women’s Health Program so that you can meet with a therapist and discuss your concerns.

About Your Wet Colostomy

An ostomy is an opening made during surgery. To make the ostomy, a piece of your intestine will be pulled to the outside of your abdomen. The part of your intestine that’s outside your body is called a stoma.

You will have a type of ostomy called a wet colostomy. This will allow stool, gas, and urine to exit your body from the same opening (see Figure 4). Your wet colostomy is permanent.

Figure 4. Wet colostomy stoma

Figure 4. Wet colostomy stoma

You won’t feel any pain or pressure within your stoma. You also won’t feel heat or cold sensations within your stoma.

About Your Healthcare Team

You will see many doctors and nurses before your surgery. Each one will describe their role in your care and answer your questions.

  • You will see a wound, ostomy, and continence (WOC) nurse, who specializes in caring for people with stomas. Your WOC nurse will go over the information in this resource with you. They will also teach you about your wet colostomy and how to care for it.
  • You may see surgeons from other departments who will work with your doctor to complete your surgery.
  • You may see a psychologist who works with people having a total pelvic exenteration surgery.

It may be helpful to write down questions as you think of them. Bring these questions to your appointments.

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Before Your Surgery

The information in this section will help you get ready for your surgery. Read through this section when your surgery is scheduled and refer to it as your surgery date gets closer. It has important information about what you need to do before your surgery.

Write down your questions and be sure to ask your doctor or nurse.

Getting Ready for Your Surgery

You and your healthcare team will work together to get ready for your surgery.

Help us keep you safe during your surgery by telling us if any of the following statements apply to you, even if you aren’t sure.

  • I take a blood thinner. Some examples are aspirin, heparin, warfarin (Coumadin®), clopidogrel (Plavix®), enoxaparin (Lovenox®), dabigatran (Pradaxa®), apixaban (Eliquis®), and rivaroxaban (Xarelto®). There are others, so be sure your healthcare provider knows all the medications you’re taking.
  • I take prescription medications (medications prescribed by a healthcare provider), including patches and creams.
  • I take over-the-counter medications (medications I buy without a prescription), including patches and creams.
  • I take dietary supplements, such as herbs, vitamins, minerals, or natural or home remedies.
  • I have a pacemaker, automatic implantable cardioverter-defibrillator (AICD), or other heart device.
  • I have sleep apnea.
  • I have had a problem with anesthesia (medication to make you sleep during surgery) in the past.
  • I am allergic to certain medication(s) or materials, including latex.
  • I am not willing to receive a blood transfusion.
  • I drink alcohol.
  • I smoke.
  • I use recreational drugs.

About Drinking Alcohol

The amount of alcohol you drink can affect you during and after your surgery. It’s important to talk with your healthcare providers about how much alcohol you drink. This will help us plan your care.

  • If you stop drinking alcohol suddenly, it can cause seizures, delirium, and death. If we know you’re at risk for these complications, we can prescribe medications to help keep them from happening.
  • If you drink alcohol regularly, you may be at risk for other complications during and after your surgery. These include bleeding, infections, heart problems, and a longer hospital stay.

Here are things you can do before your surgery to keep from having problems:

  • Be honest with your healthcare providers about how much alcohol you drink.
  • Try to stop drinking alcohol once your surgery is planned. If you develop a headache, nausea (feeling like you’re going to throw up), increased anxiety, or can’t sleep after you stop drinking, tell your healthcare provider right away. These are early signs of alcohol withdrawal and can be treated.
  • Tell your healthcare provider if you can’t stop drinking.
  • Ask your healthcare provider questions about drinking and surgery. As always, all of your medical information will be kept confidential.

About Smoking

If you smoke, you can have breathing problems when you have surgery. Stopping even for a few days before surgery can help. If you smoke, your nurse will refer you to our Tobacco Treatment Program. You can also reach the program by calling 212-610-0507.

About Sleep Apnea

Sleep apnea is a common breathing disorder that causes you to stop breathing for short periods of time while sleeping. The most common type is obstructive sleep apnea (OSA). With OSA, your airway becomes completely blocked during sleep. OSA can cause serious problems during and after surgery.

Please tell us if you have sleep apnea or if you think you might have it. If you use a breathing machine (such as a CPAP machine) for sleep apnea, bring it with you the day of your surgery.

Within 30 Days of Your Surgery

Presurgical Testing (PST)

Before your surgery, you will have an appointment for presurgical testing (PST). The date, time, and location of your PST appointment will be printed on the appointment reminder from your surgeon’s office.

You can eat and take your usual medications the day of your PST appointment.

During your appointment, you will meet with a nurse practitioner (NP) who works closely with anesthesiology staff (doctors and specialized nurses who will give you anesthesia during your surgery). Your NP will review your medical and surgical history with you. You will have tests, including an electrocardiogram (EKG) to check your heart rhythm, a chest x-ray, blood tests, and any other tests needed to plan your care. Your NP may also recommend that you see other healthcare providers.

Your NP will talk with you about which medications you should take the morning of your surgery.

It’s very helpful to bring the following things to your PST appointment:

  • A list of all the medications you’re taking, including prescription and over-the-counter medications, patches, and creams.
  • Results of any tests done outside of MSK, such as a cardiac stress test, echocardiogram, or carotid doppler study.
  • The name(s) and telephone number(s) of your doctor(s).

Identify Your Caregiver

Your caregiver plays an important role in your care. You and your caregiver will learn about your surgery from your healthcare provider. After your surgery, your caregiver should be with you when you’re given your discharge instructions so they’re able to help you care for yourself at home. Your caregiver will also need to take you home after you’re discharged from (leave) the hospital.

Complete a Health Care Proxy Form

If you haven’t already completed a Health Care Proxy form, we recommend you complete one now. A health care proxy is a legal document that identifies the person who will speak for you if you can’t communicate for yourself. The person you identify is called your health care agent. For more information about health care proxies and other advance directives, read the resource Advance Care Planning.

If you’re interested in completing a Health Care Proxy form, talk with your nurse. If you have completed one already, or if you have any other advance directives, bring them to your next appointment.

Do Breathing and Coughing Exercises

Practice taking deep breaths and coughing before your surgery. You will be given an incentive spirometer to help expand your lungs. For more information, read the resource How to Use Your Incentive Spirometer. If you have any questions, ask your nurse or respiratory therapist.

Exercise

Try to do aerobic exercise every day. Examples of aerobic exercise include walking at least 1 mile (1.6 kilometers), swimming, or biking. If it’s cold outside, use stairs in your home or go to a mall or shopping center. Exercising will help your body get into its best condition for your surgery and make your recovery faster and easier.

Follow a Healthy Diet

Follow a well-balanced, healthy diet before your surgery. If you need help with your diet, talk with your doctor or nurse about meeting with a clinical dietitian nutritionist.

10 Days Before Your Surgery

Stop Taking Vitamin E

If you take vitamin E, stop taking it 10 days before your surgery. Vitamin E can cause bleeding. For more information, read the resource Common Medications Containing Aspirin and Other Nonsteroidal Anti-inflammatory Drugs (NSAIDs).

Buy Hibiclens® Skin Cleanser

Hibiclens skin cleanser

Hibiclens is a skin cleanser that kills germs for 24 hours after you use it (see figure). Showering with Hibiclens before your surgery will help lower your risk of infection after surgery. You can buy Hibiclens at your local pharmacy without a prescription.

Buy Supplies for Your Bowel Preparation

You will need to do a bowel preparation to clean out your bowels (colon) before your surgery. Your nurse will tell you what medications you will need and how to buy them from your local pharmacy.

Buy Clear Liquids

You will need to follow a clear liquid diet before your surgery. Now is a good time to buy your supplies. For a list of clear liquids you can drink, read the section “Follow a Clear Liquid Diet.”

7 Days Before Your Surgery

Stop Taking Certain Medications

If you take aspirin, ask your doctor if you should keep taking it. Aspirin and medications that contain aspirin can cause bleeding. For more information, read the resource Common Medications Containing Aspirin and Other Nonsteroidal Anti-inflammatory Drugs (NSAIDs).

Stop Taking Herbal Remedies and Other Dietary Supplements

Stop taking herbal remedies and other dietary supplements 7 days before your surgery. If you take a multivitamin, ask your doctor or nurse if you should keep taking it. For more information, read the resource Herbal Remedies and Cancer Treatment.

Watch a Virtual Tour

This video will give you an idea of what to expect when you come to Memorial Hospital (MSK’s main hospital) on the day of your surgery.

VIDEO

2 Days Before Your Surgery

Stop Taking Certain Medications

Stop taking nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen (Advil®, Motrin®) and naproxen (Aleve®), 2 days before your surgery. These medications can cause bleeding. For more information, read the resource Common Medications Containing Aspirin and Other Nonsteroidal Anti-inflammatory Drugs (NSAIDs).

1 Day Before Your Surgery

Follow a Clear Liquid Diet

You will need to follow a clear liquid diet the day before your surgery. A clear liquid diet includes only liquids you can see through. Examples are listed in the “Clear Liquid Diet” table.

While you’re following this diet:

  • Don’t eat any solid foods.
  • Try to drink at least 1 (8-ounce) glass of clear liquid every hour while you’re awake.
  • Drink different types of clear liquids. Don’t just drink water, coffee, and tea.
  • Don’t drink sugar-free liquids unless you have diabetes and a member of your healthcare team tells you to do so.
Clear Liquid Diet
  Drink Do Not Drink
Soups
  • Clear broth, bouillon, or consommé
  • Any products with pieces of dried food or seasoning
Sweets
  • Gelatin (such as Jell-O®)
  • Flavored ices
  • Hard candies (such as Life Savers®)
  • All others
Drinks
  • Clear fruit juices (such as lemonade, apple, cranberry, and grape juices)
  • Soda (such as ginger ale, 7-Up®, Sprite®, and seltzer)
  • Sports drinks (such as Gatorade®)
  • Black coffee
  • Tea
  • Water
  • Juices with pulp
  • Nectars
  • Milk or cream
  • Alcoholic drinks

Start Your Bowel Preparation

Follow your doctor or nurse’s instructions for starting your bowel preparation.

Apply zinc oxide ointment (such as Desitin®) to the skin around your anus after every bowel movement (every time you poop). This helps prevent irritation.

Note the Time of Your Surgery

A staff member from the Admitting Office will call you after 2:00 pm the day before your surgery. If your surgery is scheduled for a Monday, they will call you on the Friday before. If you don’t get a call by 7:00 pm, please call 212-639-5014.

The staff member will tell you what time to arrive at the hospital for your surgery. They will also tell you where to go. This will be the following location:

Presurgical Center (PSC) on the 6th floor
1275 York Avenue (between East 67th and East 68th Streets)
New York, NY 10065
B elevator to 6th floor

Shower With Hibiclens

The night before your surgery, shower using Hibiclens.

  1. Use your normal shampoo to wash your hair. Rinse your head well.
  2. Use your normal soap to wash your face and genital area. Rinse your body well with warm water.
  3. Open the Hibiclens bottle. Pour some solution into your hand or a washcloth.
  4. Move away from the shower stream to avoid rinsing off the Hibiclens too soon.
  5. Rub the Hibiclens gently over your body from your neck to your feet. Don’t put the Hibiclens on your face or genital area.
  6. Move back into the shower stream to rinse off the Hibiclens. Use warm water.
  7. Dry yourself off with a clean towel after your shower.
  8. Don’t put on any lotion, cream, deodorant, makeup, powder, perfume, or cologne after your shower.

Sleep

Go to bed early and get a full night’s sleep.

Instructions for eating and drinking before your surgery

12 ounces of water

  • Do not eat anything after midnight the night before your surgery. This includes hard candy and gum.
  • Between midnight and up until 2 hours before your scheduled arrival time, you may drink a total of 12 ounces of water (see figure).
  • Starting 2 hours before your scheduled arrival time, do not eat or drink anything. This includes water.

The Morning of Your Surgery

Take Your Medications

If your doctor or NP told you to take certain medications the morning of your surgery, take only those medications with a sip of water. Depending on what medications you take and the surgery you’re having, this may be all, some, or none of your usual morning medications.

Shower With Hibiclens

Shower using Hibiclens just before you leave for the hospital. Use the Hibiclens the same way you did the night before.

Don’t put on any lotion, cream, deodorant, makeup, powder, perfume, or cologne after your shower.

Things to Remember

  • Wear something comfortable and loose-fitting.
  • If you wear contact lenses, wear your glasses instead. Wearing contact lenses during surgery can damage your eyes.
  • Don’t wear any metal objects. Remove all jewelry, including body piercings. The equipment used during your surgery can cause burns if it touches metal.
  • Don’t put on any lotion, cream, deodorant, makeup, powder, perfume, or cologne.
  • Leave valuable items (such as credit cards, jewelry, and your checkbook) at home.
  • Before you’re taken into the operating room, you will need to remove your hearing aids, dentures, prosthetic device(s), wig, and religious articles.

What to Bring

  • Your breathing machine for sleep apnea (such as your CPAP machine), if you have one.
  • Your rescue inhaler (such as albuterol for asthma), if you have one.
  • Your portable music player, if you choose. However, someone will need to hold it for you when you go into surgery.
  • Your incentive spirometer, if you have one.
  • Your Health Care Proxy form and other advance directives, if you have completed them.
  • Your cell phone and charger.
  • Only the money you may want for small purchases (such as a newspaper).
  • A case for your personal items (such as eyeglasses, hearing aid(s), dentures, prosthetic device(s), wig, and religious articles), if you have one.
  • A list of the medications you take at home.
  • This guide. Your healthcare team will use this guide to teach you how to care for yourself after your surgery.

Where to Park

MSK's parking garage

MSK’s parking garage is located on East 66th Street between York and First Avenues. If you have questions about prices, call 212-639-2338.

To reach the garage, turn onto East 66th Street from York Avenue. The garage is located about a quarter of a block in from York Avenue, on the right-hand (north) side of the street. There’s a tunnel that you can walk through that connects the garage to the hospital.

There are also other garages located on East 69th Street between First and Second Avenues, East 67th Street between York and First Avenues, and East 65th Street between First and Second Avenues.

Once You’re in the Hospital

When you get to the hospital, take the B elevator to the 6th floor and check in at the desk in the PSC waiting room.

You will be asked to say and spell your name and birth date many times. This is for your safety. People with the same or a similar name may be having surgery on the same day.

Get Dressed for Surgery

When it’s time to change for surgery, you will get a hospital gown, robe, and nonskid socks to wear.

Meet With Your Nurse

You will meet with your nurse before surgery. Tell them the dose of any medications (including patches and creams) you took after midnight and the time you took them.

Your nurse may place an intravenous (IV) line into one of your veins, usually in your arm or hand. If your nurse doesn’t place the IV, your anesthesiologist will do it later once you’re in the operating room.

Meet With Your Anesthesiologist

Your anesthesiologist will:

  • Review your medical history with you.
  • Ask you if you’ve had any problems with anesthesia in the past, including nausea or pain.
  • Talk with you about your comfort and safety during your surgery.
  • Talk with you about the kind of anesthesia you will have.
  • Answer your questions about your anesthesia.

Your doctor or anesthesiologist may also talk with you about placing an epidural catheter (thin, flexible tube) in your spine (back). An epidural catheter is another way to give you pain medication after your surgery.

Get Ready for Your Surgery

Once your nurse has seen you, 1 or 2 visitors can keep you company as you wait for your surgery to start. When it’s time for your surgery, your visitor(s) will be taken to the waiting area. Your visitors should read the resource Information for Family and Friends for the Day of Surgery.

You will either walk into the operating room or be taken in on a stretcher. A member of the operating room team will help you onto the operating bed. Compression boots will be placed on your lower legs. These gently inflate and deflate to help blood flow in your legs.

Once you’re comfortable, your anesthesiologist will give you anesthesia through your IV line and you will fall asleep. You will also get fluids through your IV line during and after your surgery.

During Your Surgery

After you’re fully asleep, a breathing tube will be placed through your mouth and into your windpipe to help you breathe.

Once your surgery is finished, your incisions (surgical cuts) will be closed with staples or sutures (stitches). You may also have Steri-Strips (thin pieces of surgical tape) or Dermabond® (surgical glue) over your incisions. Your incisions may be covered with a bandage.

Your breathing tube is usually taken out while you’re still in the operating room.

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After Your Surgery

The information in this section will tell you what to expect after your surgery, both during your hospital stay and after you leave the hospital. You will learn how to safely recover from your surgery.

Write down your questions and be sure to ask your doctor or nurse.

In the Post-Anesthesia Care Unit (PACU)

When you wake up after your surgery, you will be in the Post-Anesthesia Care Unit (PACU).

A nurse will be monitoring your body temperature, pulse, blood pressure, and oxygen levels. You may be getting oxygen through a thin tube that rests below your nose or a mask that covers your nose and mouth. You will also have compression boots on your lower legs. You will wear the compression boots while you’re in the hospital whenever you’re in bed.

Pain Medication

You will get epidural or IV pain medication while you’re in the PACU.

  • If you’re getting epidural pain medication, it will be put into your epidural space (the space in your spine just outside your spinal cord) through your epidural catheter.
  • If you’re getting IV pain medication, it will be put into your bloodstream through your IV line.

You will be able to control your pain medication using a button called a patient-controlled analgesia (PCA) device. For more information, read the resource Patient-Controlled Analgesia (PCA).

Tubes, Drains, Pouch, and Bandages

You will have tubes, drains, a pouch, and bandages on your abdomen (see Figure 5).

Figure 5. Drains, pouch, and bandages after your surgery

Figure 5. Drains, pouch, and bandages after your surgery

Your nurse will give you information about the exact tubes and drains that you have. They may include:

  • A wound VAC covering your incision. This is a special dressing that lessens the pressure on your incision, which can help it heal.
  • Jackson-Pratt® (JP) drains near your incision. These also drain fluid from around your incision. They will be taken out when your incision stops draining.
  • A pouch on your wet colostomy stoma. This collects your stool and urine. The specific type of pouch you will have is called a high-output pouch.

If you had vaginal reconstruction, you will also have bandages and drains on the inside of your upper thighs.

When your doctor or nurse changes your pouch, you will see several tubes coming out of your stoma (see Figure 6).

Figure 6. Tubes in your stoma

Figure 6. Tubes in your stoma

These include:

  • A urinary catheter. This drains urine from the urinary diversion part of your wet colostomy.
  • Stents (drainage tubes). These drain urine from your kidneys.
  • A tube to support your stoma. This is called a rod or bridge.

Visitors

Your visitors can see you briefly in the PACU, usually within 90 minutes after you arrive there. A member of the nursing staff will explain the guidelines to them.

Moving to Your Hospital Room

Most people stay in the PACU overnight. After your stay in the PACU, you will be taken to your hospital room.

In Your Hospital Room

The length of time you’re in the hospital after your surgery depends on your recovery. Most people stay in the hospital for 7 to 10 days after having a total pelvic exenteration.

When you’re taken to your hospital room, you will meet one of the nurses who will care for you and teach you how to care for yourself while you’re in the hospital.

If you had vaginal reconstruction or plastic surgery on your perineum (the area between your legs), you won’t be able to sit for 6 to 8 weeks. You can lie on your back or side, or you can stand. Your nurse will help you with this.

Read the resource Call! Don't Fall! to learn about what you can do to stay safe and keep from falling while you’re in the hospital.

Managing Your Pain

You will have pain at your incision sites and your abdomen. At first, you will get your pain medication through your epidural catheter or IV line. You will be able to control your pain medication using a PCA device. Once you’re able to eat, you will get oral pain medication (medication you swallow).

Your doctor and nurse will ask you about your pain often and give you medication as needed. If your pain isn’t relieved, tell your doctor or nurse. It’s important to control your pain so you can use your incentive spirometer and move around. Controlling your pain will help you recover better.

You will be given a prescription for pain medication before you leave the hospital. Talk with your doctor or nurse about possible side effects and when you should start switching to over-the-counter pain medications.

Moving Around and Walking

Start moving around and walking as soon as you’re able to. Walking every 2 hours is a good goal. Walking helps lower your risk for blood clots and pneumonia. Someone from the nursing staff will help you until you’re able to walk on your own. They will also teach you how to get out of bed without causing pain to your incisions.

Exercising Your Lungs

It’s important to exercise your lungs so they expand fully. This helps prevent pneumonia.

  • Use your incentive spirometer 10 times every hour you’re awake. For more information, read the resource How to Use Your Incentive Spirometer.
  • Do coughing and deep breathing exercises. A member of your care team will teach you how to do these exercises.

Eating and Drinking

You won’t be able to eat or drink for 1 to 2 days after your surgery. Then, you will be on a clear liquid diet. After that, you will start to go back to your regular diet.

Your doctor will give you eating and drinking guidelines to follow after your surgery. You will also meet with a dietitian while you’re in the hospital to review these guidelines.

Eating a balanced diet high in protein will help you heal after surgery. Your diet should include a healthy protein source at each meal, as well as fruits, vegetables, and whole grains. For more tips on increasing the calories and protein in your diet, read the resource Eating Well During and After Your Cancer Treatment.

If you have questions about your diet, ask to see a clinical dietitian nutritionist.

Showering

Your doctor will tell you when you can shower.

Your Drains, Tubes, and Incisions

You will probably have some discharge and tenderness around most of your incisions or around your drains. You may also have some bleeding for a few days after surgery. Your nurses will show and tell you what’s normal and expected. They will also help you start learning how to care for your drains, tubes, and incisions.

Your drains and tubes will be removed over the next days to weeks. Removing them won’t hurt, and you won’t need anesthesia. If you go home with any tubes or drains, your nurses will teach you how to care for them before you leave the hospital.

If you have staples in any of your incisions, they may be taken out before you leave the hospital. If you go home with staples in your incisions, they will be removed at your first appointment after surgery.

Your Stoma and Pouch

Your wet colostomy stoma will be covered with a pouch to collect stool and urine (see Figure 7).

Figure 7. Your wet colostomy pouch

Figure 7. Your wet colostomy pouch

At first, there will be tubes coming out of your stoma. They will be removed as you heal. After the tubes are removed, you will have 2 openings in your stoma: 1 for urine and 1 for stool.

Your WOC nurse and other nursing staff will teach you how to care for your stoma as you recover. It’s very helpful if your caregiver also learns how to care for your stoma. This will make it easier for them to help you at home.

For more information about your wet colostomy stoma, read the resource Caring for Your Wet Colostomy.

Planning for Your Discharge

Your case manager will arrange for a home care nurse to visit you at home. The home care nurse will help you care for your incisions, drains, and stoma.

Your nurses will give you the supplies you will need to care for yourself for the first month after your discharge. After the first month, you will order your supplies from an outside source. Your case manager and WOC nurse will give you more information. You can also read the resource Caring for Your Wet Colostomy.

Leaving the Hospital

By the time you’re ready to leave the hospital, your incision will have started to heal. Before you leave the hospital, look at your incision with your nurse and caregiver. Knowing what your incision looks like will help you notice any changes later.

On the day of your discharge, you should plan to leave the hospital around 11:00 am. Before you leave, your doctor will write your discharge order and prescriptions. You will also get written discharge instructions. Your nurse will review these instructions with you before you leave.

If your ride isn’t at the hospital when you’re ready to be discharged, you may be able to wait in the Patient Transition Lounge. A member of your healthcare team will give you more information.

At Home

You may still have tubes and drains when you go home. Ask your nurse or doctor when they will be removed. Your home care nurse will help you learn how to care for your incisions and wet colostomy.

Read the resource What You Can Do to Avoid Falling to learn about what you can do to stay safe and keep from falling at home and during your appointments at MSK.

Managing Your Pain

People have pain or discomfort for different lengths of time. You may still have some pain when you go home and will probably be taking pain medication. Some people have soreness, tightness, or muscle aches around their incision for 6 months or longer. This doesn’t mean that something is wrong.

Follow the guidelines below to help manage your pain at home.

  • Take your medications as directed and as needed.
  • Call your doctor if the medication prescribed for you doesn’t ease your pain.
  • Don’t drive or drink alcohol while you’re taking prescription pain medication.
  • As your incisions heal, you will have less pain and need less pain medication. An over-the-counter pain reliever such as acetaminophen (Tylenol®) or ibuprofen (Advil®) will ease aches and discomfort.
    • Follow your doctor or nurse’s instructions for stopping your prescription pain medication.
    • Don’t take more acetaminophen than the amount directed on the bottle or as instructed by your doctor or nurse. Taking too much acetaminophen can harm your liver.
  • Pain medication should help you resume your normal activities. Take enough medication to do your exercises comfortably. However, it’s normal for your pain to increase a little as you start to be more active.
  • Keep track of when you take your pain medication. It works best 30 to 45 minutes after you take it. Taking it when your pain first begins is better than waiting for the pain to get worse.

Caring for Your Incisions

Change your bandages at least once a day, or more often if they become wet with drainage. If there’s more than a small amount of drainage on any of your bandages, contact your doctor’s office to tell them.

You can stop using bandages when there’s no longer any drainage coming from your incisions.

If you go home with Steri-Strips or Dermabond on your incisions, they will loosen and fall or peel off by themselves. If they haven’t fallen off within 10 days, you can take them off.

It’s normal for the skin below your incisions to feel numb. This happens because some of the nerves were cut. The numbness will go away over time.

Call your doctor’s office if:

  • The skin around your incision is very red.
  • The skin around your incision is getting more red.
  • You see drainage that looks like pus (thick and milky).

Eating and Drinking

Follow the eating and drinking guidelines that your doctor or clinical dietitian nutritionist gives you. You can also read the resource Caring for Your Wet Colostomy.

If you have questions about your diet, ask to see a clinical dietitian nutritionist.

Driving

Your doctor will tell you when you can start driving again. Don’t drive while you’re taking pain medication that may make you drowsy. You can ride in a car as a passenger at any time after you leave the hospital.

Physical Activity and Exercise

Doing gentle aerobic exercise, such as walking or stair climbing, will help you gain strength and feel better. Gradually increase the distance you walk. Climb stairs slowly, resting or stopping as needed.

Don’t do any demanding activities (such as running) for 2 to 3 months after surgery. Don’t lift anything heavier than 10 pounds (4.5 kilograms) for 2 to 3 months after your surgery. Talk with your doctor before you begin doing demanding exercise or lifting heavy objects.

Sexual Activity

Talk with your doctor before starting sexual activity again. Ask them when it’s safe for you to start and what kinds of sexual activities you can do. This will depend on the specific surgery you had, such as if you had vaginal reconstruction.

  • Don’t place anything inside your vagina or reconstructed vagina until your doctor tells you it’s okay.
  • Don’t use your stoma for sexual activities.
  • Before starting any sexual activity, check to see if your pouching system is secure and that there’s no odor (smell). You may also want to empty your pouch.

Some people with ostomies prefer to cover their pouch with a cloth band or wrap, shirt, or lingerie during sexual activity. You can buy ready-made pouch covers or undergarments to help cover your pouching system.

Sexual health and intimacy is an important part of your recovery. If you have vaginal dryness, pain, or other issues, you may want to talk with someone from our Female Sexual Medicine & Women’s Health Program. To reach the program, call 646-888-5076.

Emotional Support

Having a total pelvic exenteration will change your body. It will probably take time for you to adjust to these changes. You may feel frightened, angry, embarrassed, or worried. You may have questions or fears about how this surgery will impact your life and sexuality. These feelings are normal, and most people have them.

Everybody adjusts in their own way. For some people, it will take a few months to adjust to a changed body image. For other people, it may take longer. As time goes on, you should get stronger and become more confident in caring for your pouch.

We have many resources to help you. Your doctors and nurses will answer your questions. We also have social workers, psychologists, psychiatrists, and WOC nurses who have helped many people through this change. We also have clergy available for spiritual support.

You can have one-on-one counseling or you can join one of our online or in-person support groups. MSK has a live online support group for people who have ostomies. For more information, go to www.mskcc.org/vp or send an email to virtualprograms@mskcc.org. You can also join a support group in your neighborhood.

Every new situation requires time to adjust. We are here to help you through this transition.

Using MyMSK

MyMSK (my.mskcc.org) is your MSK patient portal account. You can use MyMSK to send and receive messages from your healthcare team, view your test results, see your appointment dates and times, and more.

If you don’t already have a MyMSK account, you can sign up by going to my.mskcc.org. For more information about signing up for a MyMSK account, watch our video How to Enroll in the Patient Portal: MyMSK. You can also contact the MyMSK Help Desk by emailing mymsk@mskcc.org or calling 800-248-0593.

Contact Your Doctor or Nurse If:

  • A temperature of 100.4 °F (38 °C) or higher.
  • Pain that doesn’t get better with pain medication.
  • Redness, drainage, swelling, or a smell from your incisions.
  • Vaginal bleeding or foul-smelling discharge.
  • No urine passing into the pouch.
  • No stool passing into the pouch.
  • Any questions or concerns.

Monday through Friday from 9:00 am to 5:00 pm, contact your doctor’s office.

After 5:00 pm, during the weekend, and on holidays, call 212-639-2000 and ask to speak to the doctor on call for your doctor.

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Support Services

This section contains a list of support services that may help you get ready for your surgery and recover safely.

Write down your questions and be sure to ask your doctor or nurse.

    MSK Support Services

    Ostomy Support Services

    Online Ostomy Support Group

    Send your email address to virtualprograms@mskcc.org to take part in an online ostomy support group.

    General Support Services

    Anesthesia
    212-639-6840
    Call if you have questions about anesthesia.

    Blood Donor Room
    212-639-7643
    Call for more information if you’re interested in donating blood or platelets.

    Bobst International Center
    888-675-7722
    MSK welcomes patients from around the world. If you’re an international patient, call for help arranging your care.

    Chaplaincy Service
    212-639-5982
    At MSK, our chaplains are available to listen, help support family members, pray, contact community clergy or faith groups, or simply be a comforting companion and a spiritual presence. Anyone can request spiritual support, regardless of formal religious affiliation. The interfaith chapel is located near the main lobby of Memorial Hospital and is open 24 hours a day. If you have an emergency, please call the hospital operator and ask for the chaplain on call.

    Counseling Center
    646-888-0200
    Many people find that counseling helps them. We provide counseling for individuals, couples, families, and groups, as well as medications to help if you feel anxious or depressed. To make an appointment, ask your healthcare provider for a referral or call the number above.

    Food Pantry Program
    646-888-8055
    The food pantry program provides food to people in need during their cancer treatment. For more information, talk with your healthcare provider or call the number above.

    Integrative Medicine Service
    646-888-0800
    Integrative Medicine Service offers many services to complement (go along with) traditional medical care, including music therapy, mind/body therapies, dance and movement therapy, yoga, and touch therapy.

    Look Good Feel Better Program
    www.lookgoodfeelbetter.org
    800-395-LOOK (800-395-5665)
    This program offers workshops to learn things you can do to help you feel better about your appearance. For more information or to sign up for a workshop, call the number above or visit the program’s website.

    MSK Library
    library.mskcc.org
    212-639-7439
    You can visit our library website or speak with the library reference staff to find more information about your specific cancer type. You can also visit LibGuides on MSK’s library website at libguides.mskcc.org.

    Patient and Caregiver Support Program
    212-639-5007
    You may find it comforting to speak with a cancer survivor or caregiver who has been through a similar treatment. Through our Patient and Caregiver Support Program, you’re able to speak with former patients and caregivers. These conversations may take place in person, over the phone, or through email.

    Patient Billing
    646-227-3378
    Call if you have questions about preauthorization with your insurance company. This is also called preapproval.

    Patient Representative Office
    212-639-7202
    Call if you have questions about the Health Care Proxy form or if you have concerns about your care.

    Perioperative Nurse Liaison
    212-639-5935
    Call if you have questions about MSK releasing any information while you’re having surgery.

    Private Duty Nursing Office
    212-639-6892
    You may request private nurses or companions. Call for more information.

    Resources for Life After Cancer (RLAC) Program
    646-888-8106
    At MSK, care doesn’t end after active treatment. The RLAC Program is for patients and their families who have finished treatment. This program has many services, including seminars, workshops, support groups, counseling on life after treatment, and help with insurance and employment issues.

    Sexual Health Programs
    Cancer and cancer treatments can have an impact on your sexual health. MSK’s Sexual Health Programs can help you take action and address sexual health issues before, during, or after your treatment.

    • Our Female Sexual Medicine and Women’s Health Program helps women who are dealing with cancer-related sexual health challenges, including premature menopause and fertility issues. For more information, or to make an appointment, call 646-888-5076.
    • Our Male Sexual and Reproductive Medicine Program helps men who are dealing with cancer-related sexual health challenges, including erectile dysfunction. For more information, or to make an appointment, call 646-888-6024.

    Social Work
    212-639-7020
    Social workers help patients, family, and friends deal with issues that are common for cancer patients. They provide individual counseling and support groups throughout the course of treatment, and can help you communicate with children and other family members. Our social workers can also help refer you to community agencies and programs, as well as financial resources if you’re eligible.

    Tobacco Treatment Program
    212-610-0507
    If you want to quit smoking, MSK has specialists who can help. Call for more information.

    For more online information, visit the Cancer Types section of www.mskcc.org.

    External Support Services

    Ostomy and Gynecological Cancer Support Services

    United Ostomy Associations of America, Inc (UOAA)
    800-826-0826
    www.ostomy.org
    Volunteer group that supports people who have or will have intestinal or urinary diversions or ostomies.

    Women’s Cancer Network: Gynecological Cancer Foundation (GCF)
    312-578-1439
    www.wcn.org
    Nonprofit organization that provides education and supports research on gynecologic cancers.

    Wound, Ostomy, Continence Nurses Society
    888-224-WOCN (888-224-9626)
    www.wocn.org
    This is a professional nursing society. Nursing members have special training in the care of people with wounds, ostomies, and incontinence.

    General Support Services

    Access-A-Ride
    web.mta.info/nyct/paratran/guide.htm
    877-337-2017
    In New York City, the MTA offers a shared ride, door-to-door service for people with disabilities who can’t take the public bus or subway.

    Air Charity Network
    www.aircharitynetwork.org
    877-621-7177
    Provides travel to treatment centers.

    American Cancer Society (ACS)
    www.cancer.org
    800-ACS-2345 (800-227-2345)
    Offers a variety of information and services, including Hope Lodge, a free place for patients and caregivers to stay during cancer treatment.

    Cancer and Careers
    www.cancerandcareers.org
    A resource for education, tools, and events for employees with cancer.

    CancerCare
    www.cancercare.org
    800-813-4673
    275 Seventh Avenue (Between West 25th & 26th Streets)
    New York, NY 10001
    Provides counseling, support groups, educational workshops, publications, and financial assistance.

    Cancer Support Community
    www.cancersupportcommunity.org
    Provides support and education to people affected by cancer.

    Caregiver Action Network
    www.caregiveraction.org
    800-896-3650
    Provides education and support for people who care for loved ones with a chronic illness or disability.

    Corporate Angel Network
    www.corpangelnetwork.org
    866-328-1313
    Offers free travel to treatment across the country using empty seats on corporate jets.

    Gilda’s Club
    www.gildasclubnyc.org
    212-647-9700
    A place where men, women, and children living with cancer find social and emotional support through networking, workshops, lectures, and social activities.

    Good Days
    www.mygooddays.org
    877-968-7233
    Offers financial assistance to pay for copayments during treatment. Patients must have medical insurance, meet the income criteria, and be prescribed medication that’s part of the Good Days formulary.

    Healthwell Foundation
    www.healthwellfoundation.org
    800-675-8416
    Provides financial assistance to cover copayments, health care premiums, and deductibles for certain medications and therapies.

    Joe’s House
    www.joeshouse.org
    877-563-7468
    Provides a list of places to stay near treatment centers for people with cancer and their families.

    LGBT Cancer Project
    http://lgbtcancer.com/
    Provides support and advocacy for the LGBT community, including online support groups and a database of LGBT-friendly clinical trials.

    LIVESTRONG Fertility
    www.livestrong.org/we-can-help/fertility-services
    855-744-7777
    Provides reproductive information and support to cancer patients and survivors whose medical treatments have risks associated with infertility.

    National Cancer Institute
    www.cancer.gov
    800-4-CANCER (800-422-6237)

    National Cancer Legal Services Network
    www.nclsn.org
    Free cancer legal advocacy program.

    National LGBT Cancer Network
    www.cancer-network.org
    Provides education, training, and advocacy for LGBT cancer survivors and those at risk.

    Needy Meds
    www.needymeds.org
    Lists Patient Assistance Programs for brand and generic name medications.

    NYRx
    www.nyrxplan.com
    Provides prescription benefits to eligible employees and retirees of public sector employers in New York State.

    Partnership for Prescription Assistance
    www.pparx.org
    888-477-2669
    Helps qualifying patients without prescription drug coverage get free or low-cost medications.

    Patient Access Network Foundation
    www.panfoundation.org
    866-316-7263
    Provides assistance with copayments for patients with insurance.

    Patient Advocate Foundation
    www.patientadvocate.org
    800-532-5274
    Provides access to care, financial assistance, insurance assistance, job retention assistance, and access to the national underinsured resource directory.

    RxHope
    www.rxhope.com
    877-267-0517
    Provides assistance to help people get medications that they have trouble affording.

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    Educational Resources

    This section contains the educational resources that were referred to throughout this guide. These resources will help you get ready for your surgery and recover safely after surgery.

    Write down your questions and be sure to ask your doctor or nurse.

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