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 MSK. It will also help you learn about your wet colostomy and understand what to expect during your recovery.

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

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

About Your Total Pelvic Exenteration Surgery with 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 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

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.

Getting Ready for Your Surgery

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 through this section, write down questions to ask your healthcare provider.

Getting ready for 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 a anticoagulant (blood thinner), such as:
  These are examples of medications. There are others.
  
  Be sure your healthcare provider knows all the medications you’re taking.
  • 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 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 have 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 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 medications 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.

Within 30 Days of Your Total Pelvic Exenteration with Wet Colostomy

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.

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

It’s helpful to bring these things to your 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 names and telephone numbers of your healthcare providers.

You’ll meet with a nurse practitioner (NP) during your PST appointment. 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 to plan your care, such as:

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

Your NP may recommend you see other healthcare providers. They’ll also talk with you about which medications to 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. 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.
• 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. You’ll be given an incentive spirometer to help expand your lungs. For more information, read How To Use Your Incentive Spirometer. If you have any questions, ask your nurse or respiratory therapist.

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 Supplies for Your Bowel Prep

You’ll need to do a bowel prep 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. Read the section “Follow a clear liquid diet” for a list of clear liquids you can drink.

7 Days Before Your Total Pelvic Exenteration with Wet Colostomy

Follow your healthcare provider’s instructions for taking aspirin

Aspirin can cause bleeding. If you take aspirin or a medication 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 Common Medications Containing Aspirin, Other Nonsteroidal Anti-inflammatory Drugs (NSAIDs), or Vitamin E.

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 Total Pelvic Exenteration with Wet Colostomy

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 Common Medications Containing Aspirin, Other Nonsteroidal Anti-inflammatory Drugs (NSAIDs), or Vitamin E.

1 Day Before Your Total Pelvic Exenteration with Wet Colostomy

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 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 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 the following location:

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.

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 use 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 (12 a.m.) 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 (12 a.m.) 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

A member of your care team will tell you which medications to take 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.

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.
• 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 is on East 66^th Street between York and 1^st avenues. If you have questions about prices, call 212-639-2338.

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

There are other parking garages on:

• East 69th Street between 1st and 2nd avenues.
• East 67th Street between York and 1st avenues.
• East 65th Street between 1st and 2nd avenues.

Once You’re in the Hospital

When you get to the hospital, take the B elevator to the 6^th 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 (12 a.m.) and the time you took them. Make sure to include prescription and over-the-counter medications, 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 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, such as 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 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, 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.

Recovering after your surgery

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 through this section, write down questions 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 Patient-Controlled Analgesia (PCA).

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. 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 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 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 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 a.m. 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 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 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 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 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 (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.

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.

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 (bag).
• No stool passing into the pouch (bag).
• Any questions or concerns.

Monday through Friday from 9 a.m. to 5 p.m., contact 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 through this section, write down questions to ask your healthcare provider.

Ostomy Support Services

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

MSK support services

Visit the cancer types section of MSK’s website at www.msk.org/types for more information.

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
888-675-7722
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.

Caregivers Clinic
www.msk.org/caregivers
646-888-0200
At MSK, the Caregivers Clinic provides support specifically for caregivers who are having difficulty coping with the demands of being a caregiver. For more information, call Dr. Allison Applebaum’s office at 646-888-0200.

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 medications to help if you feel anxious or depressed. To make an appointment, ask your healthcare provider for a referral or call the number above.

Food Pantry Program
646-888-8055
We give 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
www.msk.org/integrativemedicine
Our 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. To schedule an appointment for these services, call 646-449-1010.

You can also schedule a consultation with a healthcare provider in the Integrative Medicine Service. They will work with you to come up with a plan for creating a healthy lifestyle and managing side effects. To make an appointment, call 646-608-8550.

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. To make an appointment, ask a member of your care team for a referral or call the number above.

Patient and Caregiver Education
www.msk.org/pe
Visit our Patient and Caregiver 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 for more information.

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. To learn more, call Rehabilitation Medicine (Physiatry) at 646-888-1929.
• 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. To learn more, call Rehabilitation Therapy at 646-888-1900.

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. For more information or to make an appointment, call 646-888-5076.
• Our Male Sexual and Reproductive Medicine Program can help with sexual health problems, such as erectile dysfunction (ED). For more information or to make an appointment, call 646-888-6024.

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. They also have information about financial resources, if you’re having trouble paying your bills.

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
MSK has specialists who can help you quit smoking. For more information about our Tobacco Treatment Program, call 212-610-0507. You can also ask your nurse about the program.

Virtual Programs
www.msk.org/vp
Our Virtual Programs 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 for more information about Virtual Programs or to register.

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 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.

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
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.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.

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.

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 through these resources, write down questions to ask your healthcare provider.

• About Your Recovery Tracker
• Caring for Your Wet Colostomy
• Advance Care Planning
• Call! Don't Fall!
• Common Medications Containing Aspirin, Other Nonsteroidal Anti-inflammatory Drugs (NSAIDs), or Vitamin E
• 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