About Your Total Pelvic Exenteration Surgery and Wet Colostomy

This guide will help you get ready for your total pelvic exenteration (ek-sen-ter-AY-shun) and wet colostomy (koh-LOS-toh-mee) surgery at MSK. It will also help you know what to expect as you recover.

Use this guide as a source of information in the days leading up to your surgery. Bring it with you on the day of your surgery. You and your care team will use it as you learn more about your recovery.

About your total pelvic exenteration and wet colostomy

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

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 females, the urethra is very short. It’s located above the vagina.
  • In males, 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’ll 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

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’ll 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

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’ll 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’ll 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’ll 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’ll 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’ll 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.

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

• You’ll 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’ll 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.

Before your total pelvic exenteration and wet colostomy

This section will help you get ready for your surgery. Read it when your surgery is scheduled. Refer to it as your surgery gets closer. It has important information about what to do to get ready.

As you read this section, write down questions to ask your healthcare provider.

Getting ready for your surgery

You and your care team will work together to get ready for your surgery. Help us keep you safe by telling us if any of these things apply to you, even if you’re not sure.

• I take an anticoagulant (blood thinner), such as:
  • Aspirin
  • Heparin
  • Warfarin (Jantoven®, Coumadin®)
  • Clopidogrel (Plavix®)
  • Enoxaparin (Lovenox®)
  • Dabigatran (Pradaxa®)
  • Apixaban (Eliquis®)
  • Rivaroxaban (Xarelto®)
• I take an SGLT2 inhibitor, such as:
  • Canagliflozin (Invokana®)
  • Dapagliflozin (Farxiga®)
  • Empagliflozin (Jardiance®)
  • Ertugliflozin (Steglatro®)
• I take any prescription medicines, including patches and creams. A prescription medicine is one you can only get with a prescription from a healthcare provider.
• I take any over-the-counter medicines, including patches and creams. An over-the-counter medicine is one you can buy without a prescription.
• I take any 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 (A-nes-THEE-zhuh) in the past. Anesthesia is medicine to make you sleep during a surgery or procedure.
• I’m allergic to certain medicines or materials, including latex.
• I’m not willing to receive a blood transfusion.
• I drink alcohol.
• I smoke or use an electronic smoking device, such as a vape pen or e-cigarette.
• I use recreational drugs, such as marijuana.

About drinking alcohol

It’s important to talk with your healthcare providers about how much alcohol you drink. This will help us plan your care.

If you drink alcohol regularly, you may be at risk for problems during and after your surgery. These include bleeding, infections, heart problems, and a longer hospital stay.

If you drink alcohol regularly and stop suddenly, it can cause seizures, delirium, and death. If we know you’re at risk for these problems, we can prescribe medicine to help prevent them.

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. Tell your healthcare provider right away if you:
  • Get a headache.
  • Feel nauseous (like you’re going to throw up).
  • Feel more anxious (nervous or worried) than usual.
  • Cannot sleep.

These are early signs of alcohol withdrawal and can be treated.

• Tell your healthcare provider if you cannot stop drinking.
• Ask your healthcare provider questions about drinking and surgery. All your medical information will be kept private, as always.

About smoking

If you smoke, you can have breathing problems when you have surgery. Stopping for even a few days before your surgery can help.

Your healthcare provider will refer you to our Tobacco Treatment Program if you smoke. You can also reach the program by calling 212-610-0507.

About sleep apnea

Sleep apnea is a common breathing problem. If you have sleep apnea, you stop breathing for short lengths of time while you’re asleep. The most common type is obstructive sleep apnea (OSA). With OSA, your airway becomes fully blocked during sleep.

OSA can cause serious problems during and after surgery. Tell us if you have or think you might have sleep apnea. If you use a breathing device, such as a CPAP machine, bring it on the day of your surgery.

Using MyMSK

MyMSK (my.mskcc.org) is your MSK patient portal. You can use it to send and read messages from your care team, view your test results, see your appointment dates and times, and more. You can also invite your caregiver to make their own account so they can see information about your care.

If you do not have a MyMSK account, you can sign up at my.mskcc.org. You can get an enrollment ID by calling 646-227-2593 or your doctor’s office.

Watch How to Enroll in MyMSK: Memorial Sloan Kettering's Patient Portal to learn more. You can also contact the MyMSK Help Desk by emailing [email protected] or calling 800-248-0593.

Within 30 days of your surgery

Presurgical testing (PST)

You’ll have a PST appointment before your surgery. You’ll get a reminder from your surgeon’s office with the appointment date, time, and location. Visit www.msk.org/parking for parking information and directions to all MSK locations.

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

It’s helpful to bring these things to your appointment:

• A list of all the medicines you’re taking, including prescription and over-the-counter medicines, patches, and creams.
• Results of any medical tests done outside of MSK in the past year, if you have them. Examples include results from a cardiac stress test, echocardiogram, or carotid doppler study.
• The names and telephone numbers of your healthcare providers.

You’ll meet with an advance practice provider (APP) during your PST appointment. They work closely with MSK’s anesthesiology (A-nes-THEE-zee-AH-loh-jee) staff. These are doctors with special training in using anesthesia during a surgery or procedure.

Your APP will review your medical and surgical history with you. You may have tests to plan your care, such as:

• An electrocardiogram (EKG) to check your heart rhythm.
• A chest X-ray.
• Blood tests.

Your APP may recommend you see other healthcare providers. They’ll also talk with you about which medicine(s) to take the morning of your surgery.

Identify your caregiver

Your caregiver has an important role in your care. Before your surgery, you and your caregiver will learn about your surgery from your healthcare providers. After your surgery, your caregiver will take you home when you’re discharged. They’ll also help you care for yourself at home.

For caregivers

‌  Caring for a person going through cancer treatment comes with many responsibilities. We offer resources and support to help you manage them. Visit www.msk.org/caregivers or read A Guide for Caregivers to learn more.

Fill out a Health Care Proxy form

If you have not already filled out a Health Care Proxy form, we recommend you do now. If you already filled one out or have any other advance directives, bring them to your next appointment.

A health care proxy is a legal document. It says who will speak for you if you cannot communicate for yourself. This person is called your health care agent.

• To learn about health care proxies and other advance directives, read Advance Care Planning for People With Cancer and Their Loved Ones.
• To learn about being a health care agent, read How to Be a Health Care Agent.

Talk with a member of your care team if you have questions about filling out a Health Care Proxy form.

Do breathing and coughing exercises

Practice taking deep breaths and coughing before your surgery. Your healthcare provider will give you an incentive spirometer to help expand your lungs. To learn more, read How To Use Your Incentive Spirometer.

Do physical activity

Doing physical activity will help your body get into its best condition for your surgery. It will also make your recovery faster and easier.

Try to do physical activity every day. Any activity that makes your heart beat faster, such as walking, swimming, or biking, is a good choice. If it’s cold outside, use stairs in your home or go to a mall or shopping center.

Follow a healthy diet

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

Buy a 4% chlorhexidine gluconate (CHG) solution antiseptic skin cleanser, such as Hibiclens®

4% CHG solution is a skin cleanser that kills germs for 24 hours after you use it. Showering with it before your surgery will help lower your risk of infection after surgery. You can buy a 4% CHG solution antiseptic skin cleanser at your local pharmacy without a prescription.

Buy bowel prep supplies

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

Buy clear liquids

You’ll need to follow a clear liquid diet before your surgery. It’s helpful to buy clear liquids ahead of time. Read the section “Follow a clear liquid diet” for a list of clear liquids you can drink.

7 days before your surgery

Follow your healthcare provider’s instructions for taking aspirin

Aspirin can cause bleeding. If you take aspirin or a medicine that has aspirin, you may need to change your dose or stop taking it 7 days before your surgery. Follow your healthcare provider’s instructions. Do not stop taking aspirin unless they tell you to.

To learn more, read How To Check if a Medicine or Supplement Has Aspirin, Other NSAIDs, Vitamin E, or Fish Oil. 

Stop taking vitamin E, multivitamins, herbal remedies, and other dietary supplements

Vitamin E, multivitamins, herbal remedies, and other dietary supplements can cause bleeding. Stop taking them 7 days before your surgery. If your healthcare provider gives you other instructions, follow those instead.

To learn more, read Herbal Remedies and Cancer Treatment.

2 days before your surgery

Stop taking nonsteroidal anti-inflammatory drugs (NSAIDs)

NSAIDs, such as ibuprofen (Advil^® and Motrin^®) and naproxen (Aleve^®), can cause bleeding. Stop taking them 2 days before your surgery. If your healthcare provider gives you other instructions, follow those instead.

To learn more, read How To Check if a Medicine or Supplement Has Aspirin, Other NSAIDs, Vitamin E, or Fish Oil.

1 day before your surgery

Follow a clear liquid diet

You’ll need to follow a clear liquid diet the day before your surgery. A clear liquid diet includes only liquids you can see through. You can find examples in the “Clear liquid diet” table.

While you’re following a clear liquid diet:

• Try to drink at least 1 (8-ounce) cup of clear liquid every hour you’re awake.
• Drink different types of clear liquids. Do not just drink water, coffee, and tea.
• Do not drink any liquids you can’t see through, such as milk or smoothies.
• Do not drink sugar-free liquids unless you have diabetes and a member of your care team tells you to.
• Do not eat any solid foods.

How to follow a clear liquid diet if you have diabetes

Ask the healthcare provider who manages your diabetes:

• What to do while you’re following a clear liquid diet.
• If you need to change your dose of insulin or other diabetes medication, if you take them.
• If you should drink sugar-free clear liquids.

Check your blood sugar level often while you’re following a clear liquid diet. If you have questions, talk with your healthcare provider.

Start your bowel prep

Follow your healthcare provider’s instructions for starting your bowel prep.

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 will call you after 2 p.m. the day before your surgery. If your surgery is scheduled for a Monday, they’ll call you the Friday before. If you do not get a call by 7 p.m., call 212-639-5014.

The staff member will tell you what time to get to the hospital for your surgery. They’ll also remind you where to go.

This will be:

Presurgical Center (PSC) on the 6^th floor
1275 York Ave. (between East 67^th and East 68^th streets)
New York, NY 10065
Take the B elevator to the 6^th floor. 

Visit www.msk.org/parking for parking information and directions to all MSK locations.

Shower with a 4% CHG solution antiseptic skin cleanser, such as Hibiclens

Shower with a 4% CHG solution antiseptic skin cleanser before you go to bed the night before your surgery.

Do not put on any lotion, cream, deodorant, makeup, powder, perfume, or cologne after your shower.

Instructions for eating

‌ 
Stop eating at midnight (12 a.m.) the night before your surgery. This includes hard candy and gum.

If your healthcare provider told you to stop eating earlier than midnight, follow their instructions. Some people need to fast (not eat) for longer before their surgery.

The day of your surgery

Instructions for drinking

Between midnight (12 a.m.) and 2 hours before your arrival time, only drink the liquids on the list below. Do not eat or drink anything else. Stop drinking 2 hours before your arrival time.

• Water.
• Clear apple juice, clear grape juice, or clear cranberry juice.
• Gatorade or Powerade.
• Black coffee or plain tea. It’s OK to add sugar. Do not add anything else.
  • Do not add any amount of any type of milk or creamer. This includes plant-based milks and creamers.
  • Do not add honey.
  • Do not add flavored syrup.

If you have diabetes, pay attention to the amount of sugar in these drinks. It will be easier to control your blood sugar levels if you include sugar-free, low-sugar, or no added sugar versions of these drinks.

It’s helpful to stay hydrated before surgery, so drink if you are thirsty. Do not drink more than you need. You will get intravenous (IV) fluids during your surgery.

‌ 
Stop drinking 2 hours before your arrival time. This includes water.

Take your medicines as instructed

A member of your care team will tell you which medicines to take the morning of your surgery. Take only those medicines with a sip of water. Depending on what you usually take, this may be all, some, or none of your usual morning medicines.

Shower with a 4% CHG solution antiseptic skin cleanser, such as Hibiclens

Shower with a 4% CHG solution antiseptic skin cleanser before you leave for the hospital. Use it the same way you did the night before.

Do not 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.
• Do not wear any metal objects. Take off all jewelry, including body piercings. The tools used during your surgery can cause burns if they touch metal.
• Leave valuable items at home.
• If you’re menstruating (have your monthly period), use a sanitary pad, not a tampon. We’ll give you disposable underwear and a pad if you need them.

What to bring

• Your breathing device 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 incentive spirometer, if you have one.
• Your Health Care Proxy form and other advance directives, if you filled them out.
• Your cell phone and charger.
• Only the money you may want for small purchases, such as a newspaper.
• A case for your personal items, if you have any. Eyeglasses, hearing aids, dentures, prosthetic devices, wigs, and religious articles are examples of personal items.
• A list of the medicines you take at home.
• This guide. You’ll use it to learn how to care for yourself after surgery.

Once you’re in the hospital

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

Many staff members will ask you to say and spell your name and birth date. This is for your safety. People with the same or a similar name may be having surgery on the same day.

We’ll give you a hospital gown, robe, and nonskid socks to wear when it’s time to change for surgery.

For caregivers, family, and friends

‌  Read Information for Family and Friends for the Day of Surgery to help you know what to expect on the day of your loved one’s surgery.

Meet with a nurse

You’ll meet with a nurse before surgery. Tell them the dose of any medicines you took after midnight (12 a.m.) and the time you took them. Make sure to include prescription and over-the-counter medicines, patches, and creams.

Your nurse may place an intravenous (IV) line in one of your veins, usually in your arm or hand. If your nurse does not place the IV, your anesthesiologist (A-nes-THEE-zee-AH-loh-jist) will do it in the operating room.

Meet with an anesthesiologist

You’ll also meet with an anesthesiologist before surgery. They will:

• Review your medical history with you.
• Ask if you’ve had any problems with anesthesia in the past. This includes nausea (feeling like you’re going to throw up) or pain.
• Talk with you about your comfort and safety during your surgery.
• Talk with you about the kind of anesthesia you’ll get.
• Answer questions you have about 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 surgery

When it’s time for your surgery, you’ll take off your eyeglasses, hearing aids, dentures, prosthetic devices, wig, and religious articles.

You’ll either walk into the operating room or a staff member will bring you there on a stretcher. A member of the operating room team will help you onto the operating bed. They’ll put compression boots 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’ll fall asleep. You’ll also get fluids through your IV line during and after your surgery.

During your surgery

After you’re fully asleep, your care team will place a breathing tube through your mouth into your airway. It will help you breathe. They’ll also place a urinary (Foley) catheter in your bladder. It will drain your urine (pee) during your surgery.

Your surgeon will close your incisions with staples or stitches once they finish your surgery. They may also place Steri-Strips^™ (thin pieces of surgical tape) or Dermabond^® (surgical glue) over your incisions. They may cover your incisions with a bandage.

After your total pelvic exenteration and wet colostomy

This section will help you know what to expect after your surgery. You’ll learn how to safely recover from your surgery both in the hospital and at home.

As you read this section, write down questions to ask your healthcare provider.

In the Post-Anesthesia Care Unit (PACU)

You’ll be in the PACU when you wake up after your surgery. A nurse will be keeping track of your temperature, pulse, blood pressure, and oxygen levels. You may get oxygen through a tube resting below your nose or a mask over your nose and mouth. You’ll also have compression boots on your lower legs.

Pain medicine

You’ll get epidural or IV pain medicine while you’re in the PACU.

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

You’ll be able to control your pain medicine using a button called a patient-controlled analgesia (PCA) device. Read Patient-Controlled Analgesia (PCA) to learn more.

Tubes, drains, pouch (bag), and bandages

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

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’ll be taken out when your incision stops draining.
• A pouch (bag) on your wet colostomy stoma. This collects your stool and urine. The specific type of pouch you’ll have is called a high-output pouch.

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

When your healthcare provider changes your pouch, you’ll see several tubes coming out of your stoma (see Figure 6).

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.

Moving to your hospital room

Most people stay in the PACU overnight. A staff member will bring you to your hospital room after your stay in the PACU.

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 a total pelvic exenteration.

In your hospital room, you’ll meet one of the nurses who will care for you during your stay. Your care team will teach you how to care for yourself while you’re healing from your surgery.

If you had vaginal reconstruction or plastic surgery on your perineum (the area between your legs), you will not 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.

Managing your pain

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

We will ask you about your pain often and give you medicine as needed. Tell one of your healthcare providers if your pain is not relieved. It’s important to control your pain so you can use your incentive spirometer and move around. Controlling your pain can help you recover faster.

You’ll get a prescription for pain medicine before you leave the hospital. Talk with your healthcare provider about possible side effects. Ask them when to start switching to over-the-counter pain medicine.

Moving around and walking

Moving around and walking will help lower your risk for blood clots and pneumonia (lung infection). It will also help you start passing gas and having bowel movements (pooping) again. Your nurse, physical therapist, or occupational therapist will help you move around, if needed.

To learn more about how walking can help you recover, read Frequently Asked Questions About Walking After Your Surgery.

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

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. Read How To Use Your Incentive Spirometer to learn more.
• Do coughing and deep breathing exercises. A member of your care team will teach you how.

Eating and drinking

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

Your doctor will give you eating and drinking guidelines to follow after your surgery. You’ll 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 Eating Well During 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’ll 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’ll 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’ll be removed at your first appointment after surgery.

Your stoma and pouch (bag)

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

At first, there will be tubes coming out of your stoma. They’ll be removed as you heal. After the tubes are removed, you’ll 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. 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 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’ll need to care for yourself for the first month after your discharge. After the first month, you’ll order your supplies from an outside source. Your case manager and WOC nurse will give you more information. You can also read Caring for Your Wet Colostomy.

Leaving the hospital

Before you leave, look at your incisions with one of your healthcare providers. Knowing what they looks like will help you notice any changes later.

On the day of your discharge, plan to leave the hospital around 11 a.m. Your healthcare provider will write your discharge order and prescriptions before you leave. You’ll also get written discharge instructions. One of your healthcare providers will review them with you before you leave.

If your ride isn’t at the hospital when you’re ready to leave, you may be able to wait in the Patient Transition Lounge. A member of your care 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’ll be removed. Your home care nurse will help you learn how to care for your incisions and wet colostomy.

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

Filling out your Recovery Tracker

We want to know how you’re feeling after you leave the hospital. To help us care for you, we’ll send questions to your MyMSK account. We’ll send them every day for 10 days after you’re discharged. These questions are known as your Recovery Tracker.

Fill out your Recovery Tracker every day before midnight (12 a.m.). It only takes 2 to 3 minutes to complete. Your answers to these questions will help us understand how you’re feeling and what you need.

Based on your answers, we may reach out to you for more information. Sometimes, we may ask you to call your surgeon’s office. You can always contact your surgeon’s office if you have any questions.

To learn more, read Common Questions About MSK's Recovery Tracker.

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 medicine. Some people have soreness, tightness, or muscle aches around their incision for 6 months or longer. This doesn’t mean something is wrong.

Follow these guidelines to help manage your pain at home.

• Take your medicines as directed and as needed.
• Call your healthcare provider if the medicine prescribed for you does not help your pain.
• Do not drive or drink alcohol while you’re taking prescription pain medicine. Some prescription pain medicines can make you drowsy (very sleepy). Alcohol can make the drowsiness worse.
• You’ll have less pain and need less pain medicine as your incision heals. An over-the-counter pain reliever will help with aches and discomfort. Acetaminophen (Tylenol®) and ibuprofen (Advil or Motrin) are examples of over-the-counter pain relievers.
  • Follow your healthcare provider’s instructions for stopping your prescription pain medicine.
  • Do not take too much of any medicine. Follow the instructions on the label or from your healthcare provider.
  • Read the labels on all the medicines you’re taking. This is very important if you’re taking acetaminophen. Acetaminophen is an ingredient in many over-the-counter and prescription medicines. Taking too much can harm your liver. Do not take more than one medicine that has acetaminophen without talking with a member of your care team.
• Pain medicine should help you get back to your usual activities. Take enough to do your activities and exercises comfortably. You may have a little more pain as you start to be more active.
• Keep track of when you take your pain medicine. It works best 30 to 45 minutes after you take it. Taking it when you first have pain is better than waiting for the pain to get worse.

Some prescription pain medicines, such as opioids, may cause constipation. Constipation is when you poop less often than usual, have a harder time pooping, or both.

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 have Steri-Strips or Dermabond on your incision, they’ll loosen and fall or peel off on their own. If they haven’t fallen off after 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 healthcare provider’s office if:

• The skin around your incision is very red or getting more red.
• The skin around your incision is warmer than usual.
• The area around your incision is starting to swell or getting more swollen.
• You see drainage that looks like pus (thick and milky).
• Your incision smells bad.

Eating and drinking

Follow the eating and drinking guidelines that your doctor or clinical dietitian nutritionist gives you. You can also read 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.

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 (bag) 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 (bag).

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 [email protected]. 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.

When to call your healthcare provider

Call your healthcare provider if:

• You have a fever of 100.5 °F (38 °C) or higher.
• You have pain that does not get better after taking pain medicine.
• You have redness, drainage, swelling, or a smell from your incisions.
• You have vaginal bleeding or foul-smelling discharge.
• No urine is passing into your pouch (bag).
• You stool is passing into your pouch (bag).
• You have any questions or concerns.

Contact information

Monday through Friday from 9 a.m. to 5 p.m., call your healthcare provider’s office.

After 5 p.m., during the weekend, and on holidays, call 212-639-2000. Ask to speak to the person on call for your healthcare provider.

Support services

This section has a list of support services. They may help you as you get ready for your surgery and recover after your surgery.

As you read this section, write down questions to ask your healthcare provider.

Ostomy and gynecological cancer support services

Online Ostomy Support Group
Visit www.msk.org/event/ostomy-support-group for information or to register.

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.

MSK support services

Admitting Office
212-639-7606
Call if you have questions about your hospital admission, such as asking for a private room.

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

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

Bobst International Center
332-699-7968
We welcome patients from around the world and offer many services to help. If you’re an international patient, call for help arranging your care.

Counseling Center
www.msk.org/counseling
646-888-0200
Many people find that counseling helps them. Our Counseling Center offers counseling for individuals, couples, families, and groups. We can also prescribe medicine to help if you feel anxious or depressed. Ask a member of your care team for a referral or call the number above to make an appointment.

Food Pantry Program
646-888-8055
We give food to people in need during their cancer treatment. Talk with a member of your care team or call the number above to learn more.

Integrative Medicine Service
www.msk.org/integrativemedicine
Our Integrative Medicine Service offers many services to complement (go along with) traditional medical care. For example, we offer music therapy, mind/body therapies, dance and movement therapy, yoga, and touch therapy. Call 646-449-1010 to make an appointment for these services.

You can also schedule a consultation with a healthcare provider in the Integrative Medicine Service. They’ll work with you to make a plan for creating a healthy lifestyle and managing side effects. Call 646-608-8550 to make an appointment for a consultation.

MSK Library
library.mskcc.org
212-639-7439
You can visit our library website or call to talk with the library reference staff. They can help you find more information about a type of cancer. You can also visit the library’s Patient and Health Care Consumer Education Guide.

Nutrition Services
www.msk.org/nutrition
212-639-7312
Our Nutrition Service offers nutritional counseling with one of our clinical dietitian nutritionists. Your clinical dietitian nutritionist will talk with you about your eating habits. They can also give advice on what to eat during and after treatment. Ask a member of your care team for a referral or call the number above to make an appointment.

Patient and Community Education
www.msk.org/pe
Visit our patient and community education website to search for educational resources, videos, and online programs.

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 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 Nurses and Companions
917-862-6373
You can request private nurses or companions to care for you in the hospital and at home. Call to learn more.

Rehabilitation Services
www.msk.org/rehabilitation
Cancers and cancer treatments can make your body feel weak, stiff, or tight. Some can cause lymphedema (swelling). Our physiatrists (rehabilitation medicine doctors), occupational therapists (OTs), and physical therapists (PTs) can help you get back to your usual activities.

• Rehabilitation medicine doctors diagnose and treat problems that affect how you move and do activities. They can design and help coordinate your rehabilitation therapy program, either at MSK or somewhere closer to home. Call Rehabilitation Medicine (Physiatry) at 646-888-1929 to learn more.
• An OT can help if you’re having trouble doing usual daily activities. For example, they can recommend tools to help make daily tasks easier. A PT can teach you exercises to help build strength and flexibility. Call Rehabilitation Therapy at 646-888-1900 to learn more.

Resources for Life After Cancer (RLAC) Program
646-888-8106
At MSK, care does not end after your treatment. The RLAC Program is for patients and their families who have finished treatment.

This program has many services. We offer seminars, workshops, support groups, and counseling on life after treatment. We can also help with insurance and employment issues.

Sexual Health Programs
Cancer and cancer treatments can affect your sexual health, fertility, or both. MSK’s sexual health programs can help you before, during, or after your treatment.

• Our Female Sexual Medicine and Women’s Health Program can help with sexual health problems such as premature menopause or fertility issues. Ask a member of your MSK care team for a referral or call 646-888-5076 to learn more.
• Our Male Sexual and Reproductive Medicine Program can help with sexual health problems such as erectile dysfunction (ED). Ask a member of your care team for a referral or call 646-888-6024 to learn more.

Social Work
www.msk.org/socialwork
212-639-7020
Social workers help patients, families, and friends deal with common issues for people who have cancer. They provide individual counseling and support groups throughout your treatment. They can help you communicate with children and other family members.

Our social workers can also help refer you to community agencies and programs. If you’re having trouble paying your bills, they also have information about financial resources. Call the number above to learn more.

Spiritual Care
212-639-5982
Our chaplains (spiritual counselors) are available to listen, help support family members, and pray. They can contact community clergy or faith groups, or simply be a comforting companion and a spiritual presence. Anyone can ask for spiritual support. You do not have to have a religious affiliation (connection to a religion).

MSK’s interfaith chapel is located near Memorial Hospital’s main lobby. It’s open 24 hours a day. If you have an emergency, call 212-639-2000. Ask for the chaplain on call.

Tobacco Treatment Program
www.msk.org/tobacco
212-610-0507
If you want to quit smoking, MSK has specialists who can help. Call to learn more.

Virtual Programs
www.msk.org/vp
We offer online education and support for patients and caregivers. These are live sessions where you can talk or just listen. You can learn about your diagnosis, what to expect during treatment, and how to prepare for your cancer care.

Sessions are private, free, and led by experts. Visit our website to learn more about Virtual Programs or to register.

External 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
646-929-8032
A resource for education, tools, and events for employees with cancer.

CancerCare
www.cancercare.org
800-813-4673
275 Seventh Avenue (Between West 25^th & 26^th 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.

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 medicine 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 medicines 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
www.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.

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.

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

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 medicines.

NYRx
www.health.ny.gov/health_care/medicaid/program/pharmacy.htm
Provides prescription benefits to eligible employees and retirees of public sector employers in New York State.

Patient Access Network (PAN) Foundation
www.panfoundation.org
866-316-7263
Gives help 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.

Professional Prescription Advice
www.pparx.org
888-477-2669
Helps qualifying patients without prescription drug coverage get free or low-cost medicines.

Red Door Community (formerly known as Gilda’s Club)
www.reddoorcommunity.org
212-647-9700
A place where people living with cancer find social and emotional support through networking, workshops, lectures, and social activities.

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

Triage Cancer
www.triagecancer.org
Provides legal, medical, and financial information and resources for cancer patients and their caregivers.

Educational resources

This section lists the educational resources mentioned in this guide. They will help you get ready for your surgery and recover after your surgery.

As you read these resources, write down questions to ask your healthcare provider.

• Common Questions About MSK's Recovery Tracker
• Caring for Your Wet Colostomy
• Call! Don't Fall!
• How To Check if a Medicine or Supplement Has Aspirin, Other NSAIDs, Vitamin E, or Fish Oil
• Eating Well During Your Cancer Treatment
• Herbal Remedies and Cancer Treatment
• How To Use Your Incentive Spirometer
• Information for Family and Friends for the Day of Surgery
• Patient-Controlled Analgesia (PCA)
• What You Can Do to Avoid Falling