About Your Total Pelvic Exenteration Surgery and Wet Colostomy

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.

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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’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

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’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

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’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.

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’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.

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Before Your Surgery

The information in this section will help you get ready for your surgery. Read 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.

As you read through this section, write down any questions you want 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 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, such as:
    • Aspirin
    • Heparin
    • Warfarin (Jantoven® or Coumadin®)
    • Clopidogrel (Plavix®)
    • Enoxaparin (Lovenox®)
    • Dabigatran (Pradaxa®)
    • Apixaban (Eliquis®)
    • Rivaroxaban (Xarelto®)
    There are others, so be sure your healthcare provider knows all the medications you’re taking.
  • I take prescription medications (medications my healthcare provider prescribes), 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’ve had a problem with anesthesia (medication to make me sleep during surgery) in the past.
  • I’m allergic to certain medication(s) 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, e-cigarette, or Juul®).
  • 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. 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 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 device (such as a CPAP device) 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’ll have an appointment for presurgical testing (PST). The date, time, and location will be printed on the appointment reminder from your surgeon’s office. It’s 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 healthcare provider(s).

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

During your PST appointment, you’ll meet with a nurse practitioner (NP). They work closely with anesthesiology staff (specialized healthcare providers who will give you anesthesia during your surgery). Your NP will review your medical and surgical history with you. You may have tests, such as 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.

Identify your caregiver

Your caregiver plays 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 from the hospital. They’ll also help you care for yourself at home.

For caregivers

‌  Resources and support are available to help manage the responsibilities that come with caring for a person going through cancer treatment. For support resources and information, visit www.mskcc.org/caregivers or read A Guide for Caregivers.

Complete a Health Care Proxy form

If you haven’t already completed a Health Care Proxy form, we recommend you complete one now. If you’ve already completed one or have any other advance directives, bring them to your next appointment.

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.

Talk with your healthcare provider if you’re interested in completing a health care proxy. You can also read the resources Advance Care Planning and How to Be a Health Care Agent for information about health care proxies, other advance directives, and being a health care agent.

Do breathing and coughing exercises

Practice taking deep breaths and coughing before your surgery. You’ll 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. Aerobic exercise is any exercise that makes your heart beat faster, such as walking, 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 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 supplies for your bowel preparation

You’ll need to do a bowel preparation to clean out your bowels (colon) before your surgery. Your nurse will tell you what medications 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. For a list of clear liquids you can drink, read the section “Follow a clear liquid diet.”

7 days before your surgery

Follow your healthcare provider’s instructions for taking aspirin

If you take aspirin or a medication that contains aspirin, you may need to change your dose or stop taking it 7 days before your surgery. Aspirin can cause bleeding.

Follow your healthcare provider’s instructions. Don’t stop taking aspirin unless they tell you to. For more information, read the resource Common Medications Containing Aspirin, Other Nonsteroidal Anti-inflammatory Drugs (NSAIDs), or Vitamin E.

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

Stop taking vitamin E, multivitamins, herbal remedies, and other dietary supplements 7 days before your surgery. These things can cause bleeding. For more information, read the resource Herbal Remedies and Cancer Treatment.

2 days before your surgery

Stop taking nonsteroidal anti-inflammatory drugs (NSAIDs)

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

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:

  • 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 care team tells you to.
For people with diabetes

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 take insulin or another medication for diabetes, ask if you need to change the dose.
  • Ask if you should drink sugar-free clear liquids.

Make sure to check your blood sugar level often while you’re following a clear liquid diet. If you have any questions, talk with your healthcare provider.

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, 7UP®, Sprite®, and seltzer)
  • Sports drinks (such as Gatorade®)
  • Black coffee
  • Tea
  • Water
  • Juices with pulp
  • Nectars
  • Smoothies or shakes
  • Milk or cream
  • Alcoholic drinks

Start your bowel preparation

Follow your healthcare provider’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’ll call you on the Friday before. If you don’t get a call by 7:00 pm, call 212-639-5014.

The staff member will tell you what time to arrive at the hospital for your surgery. They’ll also remind 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 a 4% CHG solution antiseptic skin cleanser (such as Hibiclens)

The night before your surgery, shower using a 4% CHG solution antiseptic skin cleanser.

  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 4% CHG solution bottle. Pour some into your hand or a clean washcloth.
  4. Move away from the shower stream. Rub the 4% CHG solution gently over your body from your neck to your feet. Don’t put it on your face or genital area.
  5. Move back into the shower stream to rinse off the 4% CHG solution. Use warm water.
  6. Dry yourself off with a clean towel after your shower.
  7. 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 before your surgery

‌  
Do not eat anything after midnight the night before your surgery. This includes hard candy and gum.
 

The morning of your surgery

Instructions for drinking before your surgery

‌  You can drink a total of 12 ounces of water between midnight and 2 hours before your scheduled arrival time. Do not drink anything else.

Do not drink anything starting 2 hours before your scheduled arrival time. This includes water.

Take your medications as instructed

If your healthcare provider 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, this may be all, some, or none of your usual morning medications.

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.

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’ll need to remove your hearing aids, dentures, prosthetic device(s), wig, and religious articles.
  • If you’re menstruating (have your monthly period), use a sanitary pad, not a tampon. You’ll get disposable underwear, as well as a pad, if needed.

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 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’ll 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’ll get a hospital gown, robe, and nonskid socks to wear.

Meet with a nurse

You’ll meet with a nurse before surgery. Tell them the dose of any medications you took after midnight (including prescription and over-the-counter medications, patches, and creams) and the time you took them.

Your nurse may place an intravenous (IV) line in one of your veins, usually in your arm or hand. If your nurse doesn’t place the IV, your anesthesiologist 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 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’ll get.
  • 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

When it’s time for your surgery, you’ll need to remove your hearing aids, dentures, prosthetic devices, wig, and religious articles, if you have them.

You’ll either walk into the operating room or a staff member will bring you there a stretcher. A member of the operating room team will help you onto the operating bed and place 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, a breathing tube will be placed through your mouth and into your windpipe to help you breathe. A urinary (Foley) catheter will also be placed to drain urine (pee) from your bladder.

Once your surgery is finished, your incision 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.

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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’ll learn how to safely recover from your surgery.

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

In the post-anesthesia care unit (PACU)

When you wake up after your surgery, you’ll 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’ll also have compression boots on your lower legs.

Pain medication

You’ll 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’ll 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’ll 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’ll 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’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).

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.

Moving to your hospital room

Most people stay in the PACU overnight. After your stay in the PACU, you’ll 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’ll 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’ll have pain at your incision sites and your abdomen. At first, you’ll get your pain medication through your epidural catheter or IV line. You’ll be able to control your pain medication using a PCA device. Once you’re able to eat, you’ll 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 healthcare provider. 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’ll be given a prescription for pain medication before you leave the hospital. Talk with your healthcare provider about possible side effects and when you should start switching to over-the-counter pain medications.

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.

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 them.

Eating and drinking

You won’t 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 the resource 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

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’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 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’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 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. 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’ll 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’ll 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.

Filling out your Recovery Tracker

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

Fill out your Recovery Tracker every day before midnight (12:00 am). 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 or ask you to call your surgeon’s office. You can always contact your surgeon’s office if you have any questions. For more information, read the resource About Your 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 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’ll 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 healthcare provider’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 healthcare provider. 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.

Some prescription pain medications (such as opioids) may cause constipation (having fewer bowel movements than usual).

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’ll 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 care team, view your test results, see your appointment dates and times, and more. You can also invite your caregiver to create their own account so they can see information about your care.

If you don’t have a MyMSK account, you can visit my.mskcc.org, call 646-227-2593, or call your doctor’s office for an enrollment ID to sign up. You can also watch our video How to Enroll in MyMSK: Memorial Sloan Kettering's Patient Portal. For help, contact the MyMSK Help Desk by emailing mymsk@mskcc.org or calling 800-248-0593.

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When to Contact Your Healthcare Provider

Contact your healthcare provider if you have:

  • A fever of 100.5 °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 healthcare provider’s office.

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

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Support Services

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

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

Ostomy support services

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

MSK support services

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

Admitting Office
212-639-7606
Call if you have questions about your hospital admission, including requesting 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
888-675-7722
MSK welcomes patients from around the world. If you’re an international patient, call for help arranging your care.

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.

Female Sexual Medicine and Women’s Health Program
646-888-5076
Cancer and cancer treatments can have an impact on your sexual health. Our Female Sexual Medicine and Women’s Health Program can help if you’re dealing with cancer-related sexual health challenges such as premature menopause or fertility issues. Call for more information or to make an appointment. We can help you take action and address sexual health issues before, during, or after your treatment.

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.

Male Sexual and Reproductive Medicine Program
646-888-6024
Cancer and cancer treatments can have an impact on your sexual health. Our Male Sexual and Reproductive Medicine Program can help if you’re dealing with cancer-related sexual health challenges such as erectile dysfunction (ED). Call for information or to make an appointment. We can help you take action and address sexual health issues before, during, or after your treatment.

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 Education
www.mskcc.org/pe
Visit the Patient and Caregiver Education website to search our virtual library. There you can find written educational resources, videos, and online programs.

Patient and Caregiver Peer Support Program
212-639-5007
You may find it comforting to speak with someone who has been through a treatment like yours. You can talk with a former MSK patient or caregiver through our Patient and Caregiver Peer Support Program. These conversations are confidential. They may take place in person or over the phone.

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.

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.

Spiritual Care
212-639-5982
Our chaplains (spiritual counselors) 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. 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
212-610-0507
If you want to quit smoking, MSK has specialists who can help. Call for information.

Virtual Programs
www.mskcc.org/vp
MSK’s Virtual Programs offer online education and support for patients and caregivers, even when you can’t come to MSK in person. Through live, interactive sessions, you can learn about your diagnosis, what to expect during treatment, and how to prepare for the various stages of your cancer care. Sessions are confidential, free, and led by expert clinical staff. If you’re interested in joining a Virtual Program, visit our website at www.mskcc.org/vp for more information.

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.

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
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.

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 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 has the educational resources mentioned in this guide. These resources will help you get ready for your surgery and recover safely after surgery.

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

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