About Your Surgery
This guide will help you prepare for your bladder surgery at Memorial Sloan Kettering (MSK), and help you understand what to expect during your recovery. Read through this guide at least once before your surgery and then 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, so that you and your healthcare team can refer to it throughout your care.
Surgery to remove the entire bladder is called a radical cystectomy. During this surgery, your surgeon will create a new passage where urine can leave your body.
Your bladder will be taken out through an incision (surgical cut) that begins near your belly button and ends at your pelvis. In addition to your bladder, it may be necessary to remove other organs near your bladder. This is done to make sure all of the cancer is removed.
The urinary system is made up of organs that make urine and get it out of your body.
Kidneys clean the toxins out of your blood and make urine. You have 2 kidneys.
Ureters are tubes that connect your kidneys to your bladder.
Your bladder stores urine until you feel the need to urinate. Urine is then released through your urethra.
In females, the urethra is a very short tube located at the top of the vagina. In males, the tube is longer and passes through the prostate gland and the penis.
In males, the following organs may be removed:
In females, the following organs may be removed:
During your surgery, the lymph nodes near your bladder will also be removed. Lymph nodes are glands that are located throughout your body and are part of the lymphatic system, which is a major part of your body’s immune system. They are removed during your surgery because they may also be involved with the cancer. If you’ve had past surgery or radiation therapy to your pelvis, we may not remove all of your lymph nodes. This is done to avoid problems after your surgery.
After your bladder is removed, your surgeon will remove a small section of your intestine called the ileum. One end of the ileum will be attached to your ureters, and the other end will be attached to a surgically created opening called a stoma. Your urine will flow through the ileal conduit into an appliance you’ll wear on the outside of your body.
Before Your Surgery
The information in this section will help you prepare for your surgery. Read through this section when your surgery is scheduled and refer to it as your surgery date gets closer. It contains important information about what you need to do before your surgery. Write down any questions you have and be sure to ask your doctor or nurse.
You and your healthcare team will work together to prepare for your surgery.
About Drinking Alcohol
The amount of alcohol you drink can affect you during and after your surgery. It is important that you talk with your healthcare providers about your alcohol intake so that we can plan your care.
- Stopping alcohol suddenly can cause seizures, delirium, and death. If we know you are at risk for these complications, we can prescribe medications to help prevent them.
- If you drink alcohol regularly, you may be at risk for other complications during and after your surgery. These include: bleeding, infections, heart problems, greater dependence on nursing care, and longer hospital stay.
Here are things you can do to prevent problems before your surgery:
- Be honest with your healthcare provider about how much alcohol you drink.
- Try to stop drinking alcohol once your surgery is planned. If you develop a headache, nausea, increased anxiety, or cannot sleep after you stop drinking, tell your doctor right away. These are early signs of alcohol withdrawal and can be treated.
- Tell your healthcare provider if you cannot stop drinking.
- Ask us any questions you have about drinking and surgery. As always, all of your treatment information will be kept confidential.
Help us keep you safe during your surgery by telling us if any of the following statements apply to you, even if you aren’t sure.
- I take a blood thinner. Some examples are heparin, warfarin (Coumadin®), clopidogrel (Plavix®), and tinzaparin (Innohep®). There are others, so be sure your doctor knows all the medications you’re taking.
- I take prescription medications.
- I take any over-the-counter medications, 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 in the past.
- I have allergies, including latex.
- I am not willing to receive a blood transfusion.
- I drink alcohol.
- I smoke.
- I use recreational drugs.
People who smoke can have breathing problems when they have surgery. Stopping even for a few days before surgery can help. If you want to quit, call our Tobacco Treatment Program at 212-610-0507. You can also ask your nurse about the program.
About Sleep Apnea
Sleep apnea is a common breathing disorder that causes a person to stop breathing for short periods while sleeping. The most common type is obstructive sleep apnea (OSA). This means that the airway becomes completely blocked during sleep, so no air can get through. OSA can cause serious problems when you have surgery. Please tell us if you have sleep apnea or if you think you might have it. If you use a breathing machine (CPAP) for sleep apnea, bring it with you the day of your surgery.
Before your surgery, you will be given an appointment for presurgical testing (PST). During your PST appointment, you will meet with a nurse practitioner who works closely with anesthesiology staff (doctors and specialized nurses who will be giving you medication to sleep during surgery). You can eat and take your usual medications the day of your PST appointment.
During your appointment, your nurse practitioner will review your medical and surgical history with you. You will have tests, including an electrocardiogram (EKG) to check your heart rhythm, a chest x-ray, blood tests, and any other tests necessary to plan your care. Your nurse practitioner may also recommend you see other healthcare providers.
Your nurse practitioner will talk with you about which medications you should take the morning of your surgery. To help you remember, we’ve left space for you to write these medications down in “The Morning of Your Surgery” section of this guide. It is very helpful if you bring the following with you to your PST appointment:
- A list of all the medications you are taking, including patches and creams.
- Results of any tests done outside of MSK, such as a cardiac stress test, echocardiogram, or carotid doppler study.
- The name(s) and telephone number(s) of your doctor(s).
Complete a Health Care Proxy Form
If you haven’t already completed a Health Care Proxy form, we recommend you complete one now. A health care proxy is a legal document that identifies the person who will speak for you if you are unable to communicate for yourself. The person you identify is called your health care agent. If you are interested in completing a Health Care Proxy form, talk with your nurse. If you have completed one already, or if you have any other advanced directive, bring it with you to your next appointment.
Consider Our Sexual Health Programs
Bladder surgery will affect your sexual health. If you have any concerns about how it will affect you, consider making an appointment with one of our sexual health clinics.
Information for Males
You can expect to have difficulty getting or keeping an erection right after the surgery. This is called erectile dysfunction. There are many types of treatments for erectile dysfunction, including pills, injections, or a prosthesis. Your doctor can discuss these options with you. To see a specialist in the Male Sexual & Reproductive Medicine Program, call 646-888-6024.
You may have the option of banking your sperm before surgery. Please ask your nurse for information on sperm banking and for a list of sperm banks in this area if you wish to bank your sperm.
Information for Females
If your reproductive organs are removed, you will not be able to bear children after this surgery. If you hope to get pregnant, talk to your surgeon before your surgery. You will also experience changes in sexual function after the surgery. These may include a shorter vaginal canal and menopause. Your surgeon will discuss your treatment options with you in more detail. We recommend that you make an appointment to see a specialist in the Female Sexual Medicine & Women’s Health Program by calling 646-888-5076.
Meet with a Wound, Ostomy, and Continence Nurse
A wound, ostomy, continence (WOC) nurse is a nurse who specializes in caring for stomas. Before your surgery your WOC nurse will mark a possible site on your stomach for your stoma. The site will be the best possible location, away from scars, creases, folds, and if possible, in an area that will make it easy for you to care for it. Even if your surgeon does not think you will need a stoma, he or she may have your WOC nurse mark a site anyway. This is done in case his or her surgical plan changes based on findings at the time of your surgery.
Do Breathing and Coughing Exercises
Practice taking deep breaths and coughing before your surgery. You will be given an incentive spirometer to help expand your lungs. For more information, please read How to Use Your Incentive Spirometer, located in the “After Your Surgery” section of this guide. If you have any questions, ask your nurse or respiratory therapist.
Purchase Hibiclens® Skin Cleanser
Hibiclens is a skin cleanser that kills germs for 6 hours after using it. Showering with Hibiclens before surgery will help reduce your risk of infection after surgery. Hibiclens is available at your local pharmacy without a prescription.
Review Your Medications
If you take vitamin E, stop taking it 10 days before your surgery. If you take aspirin, ask your surgeon whether you should continue. Medications such as aspirin, medications that contain aspirin, and vitamin E can cause bleeding. For more information, please read Common Medications Containing Aspirin and Other Nonsteroidal Anti-inflammatory Drugs (NSAIDs), located in this section.
Watch a Virtual Tour
This video will give you an idea of what to expect when you come to Memorial Sloan Kettering’s main hospital on the day of your surgery.
Drink Only Clear Liquids
You will need to follow a clear liquid diet the day before your surgery. Examples of clear liquids are listed in the table below. Your doctor or nurse will tell you if you will need an extra day of clear liquids or any additional bowel preparation.
While you are on this diet:
- Do not eat any solid foods.
- Make sure to drink plenty of liquids other than water, coffee, and tea. Try to drink at least 1 (8-ounce) glass of clear liquid every hour while you’re awake.
Do Not Drink
Sweets and Desserts
Note the Time of Your Surgery
A clerk from the Admitting Office will call you after 2:00 pm the day before your surgery. He or she will tell you what time you should arrive at the hospital for your surgery. If you are scheduled for surgery on a Monday, you will be called on the Friday before. If you do not receive a call by 7:00 pm, please call 212-639-5014.
Shower With Hibiclens
The night before your surgery, shower using the Hibiclens solution. To use Hibiclens, open the bottle and pour some solution into your hand or a washcloth. Rub gently over your body from your neck to your waist and rinse. Do not let the solution get into your eyes, ears, mouth, or genital area. Dry with a clean towel after your shower.
Go to bed early and get a full night’s sleep.
Between midnight and up until 2 hours before your scheduled arrival time, you may drink a total of 12 ounces of clear liquids (see Figure 3).
Examples of clear liquids include:
- Clear broth, bouillon, or consommé (no particles of dried food or seasonings)
- Gelatin, such as Jell-O®
- Clear fruit juices (no pulp), such as white cranberry, white grape, or apple
- Soda, such as 7-Up®, Sprite®, ginger ale, seltzer, or Gatorade®
- Coffee or tea, without milk or cream
Shower With Hibiclens
Shower using Hibiclens just before you leave for the hospital. Use the hibiclens the same way you did the night before. Do not use any other soap. Do not put on any lotion, cream, powder, deodorant, makeup, or perfume after your shower.
Take Your Medications
Your doctor or nurse practitioner may have told you to take certain medications the morning of your surgery. If so, list them below. Take only those medications with a small sip of water the morning of your surgery.
Things to Remember
- Do not put on any lotions, creams, deodorants, makeup, powders, or perfumes.
- Do not wear any metal objects. Remove all jewelry, including body piercings. The equipment used during your surgery can cause burns if it touches metal.
- Leave valuables, such as credit cards, jewelry, or your checkbook at home.
- Before you are taken into the operating room, you will need to remove your eyeglasses, hearing aids, dentures, prosthetic device(s), wig, and religious articles, such as a rosary.
- This guide. Your healthcare team will use this guide to teach you how to care for yourself after your surgery.
- A pair of loose-fitting pants (sweat pants are a good choice).
- Sneakers that lace up. You may have some swelling in your feet, lace up sneakers can accommodate this swelling.
- Only the money you may need for a newspaper, bus, taxi, or parking.
- A CD player and CDs or an iPod, if you choose. However, someone will need to hold these items for you when you go into surgery.
- Your incentive spirometer, if you have one.
- If you usually wear contact lenses, wear your glasses instead. Remember to bring a case for them.
- Your Health Care Proxy form, if you have completed one.
Parking When You ArriveParking at MSK is available in the garage on East 66th Street between York and First Avenues. 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 is a pedestrian tunnel that you can walk through that connects the garage to the hospital. If you have questions about prices, call 212-639-2338.
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
You will be asked to state and spell your name and date of birth many times. This is for your safety. People with the same or similar names may be having surgery on the same day.
Get Dressed for Surgery
You will be given a hospital gown, robe, and nonskid socks.
Meet With Your Nurse
A nurse will meet with you before your surgery. Tell him or her the dose of any medications (including patches and creams) you took after midnight and the time you took them.
Marking Your Surgical Site
In addition to being asked your name and birth date, you may also be asked the name of your surgeon, what operation you are having, and which side is being operated on. Your surgeon or another member of the surgical team will use a marker to initial the site on your body that will be operated on. This is for your safety; it ensures that all members of the surgical staff are clear about the plan for your surgery.Back to top
After Your Surgery
The information in this section will tell you what to expect after your surgery, both during your hospital stay and after you leave the hospital. You will learn how to safely recover from your surgery. Write down any questions you have and be sure to ask your doctor or nurse.
In the Recovery Room
Your surgery will take about 3 to 5 hours. When you wake up after your surgery, you will be in the Post-Anesthesia Care Unit (PACU).
You will have an oxygen mask covering your nose and mouth. A nurse will be monitoring your body temperature, pulse, blood pressure, and oxygen levels. You will also have compression boots on your lower legs to help your circulation.
You will have several different types of drainage tubes in your body.
- Jackson Pratt® drain
- This is a small, egg-shaped container that is connected to a drainage tube. It exits through an opening in the lower part of your stomach and collects liquid from your pelvis.
- Nasogastric (NG) tube
- This is a tube that is inserted through your nose into your stomach. It will drain the liquids from your stomach and may stay in place for a few days after your surgery. It will be removed when you begin passing gas. This is a sign that your intestines have regained function.
- Penrose drain
- This is a small, soft, flat drainage tube. It exits through an opening in the lower part of your stomach to drain liquid from your pelvis.
- These are 2 small, white tubes that are used to drain your kidneys. They may exit through an opening in your stomach or be attached internally to your Foley catheter.
Your visitors can see you briefly in the PACU, usually within 90 minutes after you arrive there. A member of the nursing staff will explain the guidelines to them.
You will probably stay in the PACU overnight. You will be taken to your room the next morning. There, your nurse will tell you what you can do to recover from your surgery.
During Your Hospital Stay
You will be in the hospital for about 1 week. However, your stay may be shorter or longer, depending on your recovery. Below are 2 examples of ways you can help yourself recover safely.
- It is important to walk around after surgery. Walking every 2 hours is a good goal. This will help prevent blood clots in your legs.
- Use your incentive spirometer. This will help your lungs expand, which prevents pneumonia. When using your incentive spirometer or other breathing exercises, it may help to splint your incision. To do this, hold a pillow or blanket against the incision sites. This will reduce movement in your muscles.For more information, please readHow to Use Your Incentive Spirometer, in this section.
Managing Your Pain
You will have some pain after your surgery. Your doctor and nurse will ask you about your pain often. You will receive medication to help your pain through a pain pump that you can control. This is called patient-controlled analgesia (PCA). For more information, please read Patient-Controlled Analgesia (PCA), in this section. If your pain is not relieved, please tell your doctor or nurse. It is important to control your pain so you can cough, breathe deeply, use your incentive spirometer, and get out of bed and walk.
Right after surgery, you may have some swelling in your genitals and groin area. This is normal and will go away after several weeks. You may also notice some discharge from your penis or vagina. This should also go away over several weeks.
You will not be able to have solid foods for a few days after your surgery. During this time you will receive liquid through a vein. Some patients need to have a nasogastric tube for a few days after surgery. This tube helps drain liquids in your stomach if your bowel function is slow.
Your appetite may not be the same as it was before your surgery and you may feel full quicker. Eat several small meals throughout the day, rather than 3 large meals. Eating this way will help your digestion and give you energy throughout the day.
Eating a balanced diet high in calories and protein is important for healing after surgery. Your diet should include a good protein source at each meal, as well as fruits, vegetables, and whole grains. For more tips on increasing your calorie and protein intake, ask for the booklet Eating Well During and After Your Cancer Treatment. If you have questions about your diet, ask to see a dietitian.
Learning to Care for Yourself
You will be able to shower with help within 3 to 4 days after your surgery.
While you’re in the hospital your nurse will teach you how to care for your urinary diversion and any drains you’ll have when you leave the hospital. If you have a caregiver who will help you when you go home, it will be helpful to have him or her be there during teaching. Your nurse will also give you written information that you can place in this folder to review when you’re at home.
Your case manager will work with you to arrange for a visiting nurse to see you when you leave the hospital.
Getting Your Supplies
Your nurse will give you about a 3 week supply of the equipment you’ll need to care for yourself at home. He or she will also give you the names of places to order your supplies from.
The visiting nurse arranged by your case manager will see you when you’re home from the hospital. He or she will monitor your recovery and teach you how to care for yourself after surgery.
Managing Your Pain
The length of time each patient has pain or discomfort varies. Some patients may have incisional soreness, tightness, or muscular aches for up to 6 months or longer. It does not mean that something is wrong. Follow the guidelines below.
- Call your doctor if the medication prescribed for you doesn’t relieve your pain.
- Do not drive or drink alcohol while you are taking prescription pain medication.
- As your incisions heal, you will have less pain. As time goes on, the amount of pain medicine that you need will decrease. A mild pain reliever such as acetaminophen (Tylenol) or ibuprofen (Advil) will relieve aches and discomfort.
- Pain medication should help you as you resume your normal activities. Take enough medication to do your exercises comfortably. Pain medication is most effective 30 to 45 minutes after taking it.
- Keep track of when you take your pain medication. It will not be as effective if your pain has been allowed to increase. Taking it when your pain first begins is more effective than waiting for the pain.
Your usual bowel pattern will change after surgery. You may have trouble passing stool (feces). This is a common side effect of pain medication. Here are some suggestions to help prevent constipation:
- Take a stool softener such as docusate sodium (Colace®) 3 times a day. Continue taking the stool softener until you are no longer taking pain medications.
- If you have not had a bowel movement in 2 days, take a mild laxative. We recommend 1 packet of polyethylene glycol (MiraLAX®) with a tall glass of warm water. Do not take a laxative if you have nausea, vomiting, or stomach swelling. If you have these symptoms, call your doctor.
- Drink at least 2 liters of liquids a day, preferably juice or water. Prune juice may also help.
- If you feel bloated, avoid foods that can cause gas, such as beans, broccoli, onions, cabbage, and cauliflower.
- Make sure your meals and snacks are well balanced and high in protein.
- Increase the fiber in your diet to soften your stool. Foods high in fiber include:
- Whole-grain cereals and breads
- Unpeeled fruits and vegetables
- Mixed green salads
- Apricots, figs, and raisins
- Walk daily
After awhile, some patients have frequent bowel movements. This is because part of your intestine was removed. If this is an issue for you, please speak to your doctor or nurse. You may need to change your diet or take medication. If you have any questions about your diet when you are at home, speak with your doctor or call a dietitian.
You may eat all the foods you did before unless your doctor has put you on a special diet. You may drink alcohol in moderation if:
- You are not taking a narcotic, such as morphine, hydromorphine or oxycodone.
- Your doctor says it is okay.
Drink plenty of liquids without alcohol or caffeine each day. The amount you need to drink may vary based on your body size and the temperature outside. You should drink enough liquids so that the urine in your bag is a very light yellow color or clear. If it becomes dark yellow or orange, that is a sign that you need to drink more fluids. (Note: beets will turn your urine a reddish color temporarily. Do not worry if this happens.) Foods with protein (meat, fish, eggs) and vitamin C (fruits) help heal wounds.
Caring for Your Incision
- You may have some pain at the incision for the first few weeks after the surgery. If this occurs, take your pain medication as prescribed by your doctor.
- Before you leave the hospital, your doctor will probably remove your staples and place butterfly strips over your incision. These strips will loosen and fall off by themselves. Sometimes, the doctor will decide to keep the staples in. In that case, you will need to return several days later to have them removed.
- Shower daily but do not take a bath until 4 weeks after your surgery. Use soap but not directly on your incision. Do not rub the area around your incision. Pat the area dry with a clean towel after you shower and leave your incision uncovered. You may place a small bandage over your incision if your clothing may rub it (e.g., your waistline).
Sexuality includes many aspects of caring and closeness. It is not only having sex. You and your partner can build other forms of sexual and emotional expression. Most important, remember that your surgery does not change your feelings for each other. Sexual counseling to talk about these issues can help. Any member of your healthcare team can refer you to counseling.
After surgery, most males will have erectile dysfunction. There are a number of treatments to help with this. We recommend that male patients make an appointment to see a specialist in the Male Sexual & Reproductive Medicine Program by calling 646-888-6024.
After surgery, females will not able to bear children if their reproductive organs were taken out. There may also be changes to the structure of the vagina. We recommend that female patients make an appointment to see a specialist in the Female Sexual Medicine & Women’s Health Program by calling 646-888-5076.
The American Cancer Society (ACS) offers free booklets on cancer and sexual health called Sexuality for the Man With Cancer and Sexuality for the Woman With Cancer. You can get copies by calling 1-800-ACS-2345, or go to www.cancer.org.
You can’t harm your stoma during sex as long as there is not constant pressure on it. Do not put anything into the opening of your stoma.
It is normal to have less energy than usual after your surgery. Recovery time varies with each patient. Increase your activities each day as much as you can. Always balance activity periods with rest periods. Rest is a vital part of your recovery.
When you leave the hospital, your incision will appear to be healed on the outside but it will not be healed on the inside.
- Do not lift anything heavier than 10 pounds (about 4 ½ kilograms).
- Do not do any strenuous activity for at least 6 weeks after your surgery. For example, do not jog or play tennis or any contact sports. Ask your doctor about any other exercise.
- Walk 2 to 3 times a day for 20 to 30 minutes. If the weather does not permit you to walk outside, your local mall or shopping center may be a good alternative.
Returning to Work
Having a stoma should not stop you from going back to work. Tell your doctor or nurse what you do so they can decide when it is safe for you to return. For example, if your job involves heavy lifting, you may need to stay out a little longer than if you sit at a desk.
Ask your surgeon when you can drive. For most people, it will be at least 6 weeks after surgery. Do not drink alcohol or drive while you are taking prescription pain medication.
To protect your stoma from your seatbelt, place a small pillow next to it. Your WOC nurse can give you more information. You may ride in a car as a passenger at any time after you leave the hospital.
You will be able to travel. Here are some suggestions, which may make your travel experience worry-free.
- Bring extra supplies, just in case it is hard to get them at your destination.
- Carry all your equipment with you instead of checking it in on a plane, train, or bus. There is always the chance you may become separated from your luggage.
- Discuss travel options with your WOC nurse. You may want to use a leg bag.
Managing Your Feelings
After surgery for a serious illness, you may have new and upsetting feelings. Some people say they feel weepy, sad, worried, nervous, irritable, and angry at one time or another. You may find that you can’t control some of these feelings. If this happens, it’s a good idea to seek emotional support.
Talking about how you feel with family and friends can help you cope. Your healthcare team are also available to reassure, support, and guide you, so let your nurse, doctor, or social worker know how you’re feeling. There are many resources available to you and your caregiver(s), including MSK’s on-line and in-person bladder cancer support groups. Information about those groups and other resources such as the Bladder Cancer Advocacy Network (BCAN) is located in the “Resources” section of this guide.
- A fever of 101° F (38.3° C), chills, or both
- Any bleeding
- Leakage or drainage from your incision
- Redness at your incision
- Increased pain
- Nausea or vomiting
- Leg swelling or pain
- Shortness of breath
- Catheter or drainage tubes that are dislodged or not draining
- No bowel movement for more than 2 days
- Decreased urine output
- Any problems you did not expect
- Any questions or concerns
After 5:00 pm, during the weekend, and on holidays, please call 212-639-2000 and ask for the doctor on call for your service.
What are the most common skin problems related to urostomies?
The most common skin problems happen when:
- You get urine under the wafer.
- You have allergies to your ostomy products.
A common skin problem causes a build-up of tissue. It looks like gray or purple warts and may have white spots. It can cause pain around your stoma. It comes from constant exposure of the skin to urine. To resolve this problem, you may need to:
- Cut or mold your wafer, or get a different pre-cut wafer.
- Change the type of wafer you are using.
- Apply a barrier to your wafer such as the Colly-Seel™ disc or Coloplast barrier ring.
You may also need to treat the skin each time you change your appliance. Mix ¼ cup of white vinegar with 1 cup of water. Soak a gauze with this solution and place it over the skin for 5 minutes. Rinse it with water. Then dry it well and apply a new wafer.
If you have an allergy, you will need to try a different brand of wafer and pouch. If you develop a rash tell your doctor or WOC nurse. They can give you something to treat it. Talk to your WOC nurse if you have any problems with the skin around your stoma.
What are the signs and symptoms of a urinary tract infection? How do I avoid a urinary tract infection?
The signs and symptoms of a urinary tract infection are:
- Foul smelling urine
- Cloudy urine
- Back pain
- Nausea and vomiting
- Loss of appetite
To prevent an infection, drink 6 to 8 glasses of water or other liquids daily. Avoid large amounts of alcohol and caffeine. Use a pouch with an antireflux valve and a night drainage system. This prevents urine from sitting on your stoma and causing an infection. Empty your pouch when it is ⅓ to ½ full. You may want to ask your doctor if you can take vitamin C (about 500 mg–1, 000 mg daily) and a sugar-free cranberry pill daily. These will increase the acidity of your urine and may help:
- Prevent urinary tract infections
- Decrease odor
- Prevent damage to your skin
What color should my stoma be?
Your stoma should be a deep pink or red color all the time. If your stoma looks grey, brown, or black, contact your doctor right away.
Is it normal for my stoma to bleed when I touch it or change my appliance?
The stoma contains many blood vessels and may bleed easily. It is common to have a small amount of blood on the tissue when cleaning the stoma. The bleeding should stop on its own within a few minutes. If you are on a blood thinner or aspirin, you may bleed more easily and for a longer time. Call your doctor if you bleed a lot or if it does not stop after 5 to 10 minutes. If there is blood in your urine or coming from the inside of your stoma, call your doctor right away.
The area around my stoma seems to bulge. Is this normal?
You may have a hernia. Often, the abdominal wall muscle is weak. A loop of bowel then causes a bulge to form in the area of your stoma. If you see a bulge around your stoma, contact your doctor or ostomy nurse.
Hernias often do not have any symptoms. They are not treated unless they cause a problem. If the bowel becomes blocked or twisted, it would need to be treated. Call your doctor right away if you have:
- Pain in the abdomen
- Swelling in the abdomen
Your ostomy nurse can measure you for a hernia support belt. These belts are custom made and do not cure the hernia but may keep them from getting worse. You can also use a girdle or biking shorts to support the hernia. If you use these, you will need to cut out a hole for the ostomy pouch. The belt or shorts can make you feel more comfortable. They can also pull the area in to help your clothes fit better.
What do I do if I develop leakage of urine under my wafer?
If this is becoming a problem, see your WOC nurse. You may need a different system that fits better to avoid leakage.
How do I clean my night drainage system?
Wash it daily with warm water or a 1 to 4 white vinegar and water solution. After you wash it, let it dry. You can also buy cleansers such as M9™ Crystallizer cleansing system. The night drainage bag should be replaced every 2 to 4 weeks.
How do I find out about the latest products on the market?
Your WOC nurse will know about the latest products on the market. You may also call companies and ask for samples of their latest products. Try doing a search on the web for ostomy products or join an online chat room. Another option is to join a local support group for people with ostomies. Often, other people dealing with the same issues know of products that might meet your needs.
Can I wear a clothing belt over my stoma and how do I position the pouch?
Try to wear a belt above or below your stoma. If the belt is directly over the stoma, it may cause:
- An overgrowth of tissue
You can also wear a stoma guard. This helps to prevent the belt from pressing on the stoma.
The pouch may point directly downward or to the side. It can also be folded if you prefer. You might also try special underwear or concealment bands such as those from www.ostomysecrets.com or www.steathbelt.com.
Is there anything I should do to prepare for tests such as a scan with contrast?
If you are having a scan with contrast, you will need to increase your intake of liquids. This is to rid yourself of the contrast. This will increase your urine output. Bring an extra appliance with you, including an extra leg bag or night bag. You may need it if you have a leak because of increased urine output. If you live an hour or more away from the hospital, empty your bag before leaving. You may also need to empty it on the trip home or use a leg bag.
If you are going to the doctor for any other tests or chemotherapy, you should bring extra supplies with you. Ostomy supplies are not stocked in all areas and you may need an extra set. Chemotherapy may cause your body to make more urine, and it may also cause a change in skin sensitivity or the way the wafer sticks to your skin. You may need to change your wafer more often during chemotherapy to protect your skin and prevent leakage. If you prefer a 1 piece system, you may need to switch to a 2-piece system for a while. You may need to switch if you are having a procedure where the doctor or nurse has to access the stoma. If you have any problems, contact your WOC nurse.
Do I need to wear gloves when I change the pouch?
That is a personal preference. Just as you didn’t wear gloves to wipe yourself before your ostomy, you do not need to wear them now. Some people prefer to because some urine could come in contact with your fingers.Back to top
This section contains information about resources that you may find helpful before, during, and after your surgery. You may also wish to add other information, which you can list on page 1 of this guide. Write down any questions you have and be sure to ask your doctor or nurse.
The following are resources that you may find helpful.
RLAC runs a support group for people with bladder cancer called Challenges & Solutions. For more information call RLAC or 646-422-4628.
Cancer and its treatments can have an impact on your sexual health. MSK’s Sexual Health Program can help you take action and address sexual health issues before, during, or after your treatment.
This is a live, online support and education group for people undergoing treatment for bladder cancer. People share their personal experiences and provide practical and emotional support for one another. This group meets the fourth Thursday of each month from 4:00 pm to 5:00 pm. Discussions are led by a social worker and a nurse. For more information, or to register, email email@example.com.
The following are resources outside of MSK that you may find helpful:
- All majore suppliers of ostomy products
- Support groups