Instructions For Care Following Cystectomy/Neobladder

You have just undergone a major operation. The healing process takes time and we would like for you to observe the following instructions during your initial recovery at home. We have written this information for you to use as a reference during this initial healing phase.

Your doctor has just made you a new bladder. This new bladder doesn't have the same nerve supply as your normal bladder so you will not have the same sensation of the need to urinate. For the first few months after surgery, you should urinate "by the clock" rather than waiting for the urge to go to the bathroom. After the foley catheter has been removed in the clinic (3 weeks after the surgery), you should urinate every 2 hours, day and night for the first week. During the second week, urinate every 3 hours, and during the third week you can stretch the period between voiding to 3 - 4 hours. You should continue to get up twice a night to empty the bladder.

The new bladder continues to enlarge and function better even over the first one, two, and three year, so you must be patient. However, initially patients have more incontinence during the night and most of them will wear an incontinence pad. Leakage of urine during the day is unlikely and usually improves quickly.

Also, the "new bladder" doesn't contract (squeeze out the urine) like a normal bladder does. To urinate, you need to relax the sphincter muscles and push with the abdominal muscles, the same as if you were having a bowel movement. Take your time to make sure the bladder is emptied well. There are exercises described later in this information that may help you be able to learn how to do this.

This will give you information about what to expect after surgery as well as some instructions of how to care for your new bladder.

Initial Post-op Treatments

The following are explanations of some of the care measures that are taken to help you in your recovery immediately after your surgery as well some of the aspects of your care you need to know about when you are discharged from the hospital.

Patient Controlled Analgesia

The first several days after surgery, you may receive your pain medication through a catheter that is placed in the epidural space in your spine. This is a very effective means of relieving pain and works by using a medication that will block the pain. It is administered via a device that will automatically give you a prescribed dosage of medication. This will be closely monitored by the Pain Service, your physician and the nurses.

Several days after surgery you will be changed to a medication that will be administered through your IV via a device referred to as a PCA. (Patient Controlled Analgesia). This device also administers pain medication at a prescribed dosage and at preset intervals. You will have a button you can push when you need a dose. This will also be monitored closely by the Pain Service, the physicians, and the nurses. After several days of the PCA, you will be changed to an oral pain medication. We feel that pain control is very important to your healing and we will do all we can to keep you comfortable.

Incentive spirometry

Purpose: To promote complete lung expansion and prevent respiratory complications which will affect the body temperature. It is very important to use the incentive spirometer during the time before being up and about.

Instructions

• Seal the lips tightly around the mouthpiece, inhale naturally, and hold your breath for 3 to 5 seconds to achieve full lung expansion.
• Exhale and rest a few seconds.
• Each time you inhale, breath deeper trying to get the disk in the column to a higher volume, holding it there as long as you can.
• This should be done at least 10 times an hour while you are awake.
• Deep breathing exercises are also helpful. Simply take a regular breath through your mouth. Breathe out gently and completely. Then take a deep breath and hold to the count of five. Exhale through your mouth and nose completely. Do this about 10 times each hour while you are awake.

LEG TREATMENTS AND EXERCISES

Sequential compression devices (SCD)

Purpose: SCDs enhance circulation by providing intermittent periods of compression on the lower extremities. These are cloth sleeves wrapped around each leg and connected to a machine which has been preset to automatically give the prescribed or recommended compression pressures that is needed to prevent blood clots from forming. Essentially, this provides the same effect to your legs as walking.

Instructions: The nurses will place the sleeve on both lower extremities when you return from surgery unless they have been placed in the recovery room. These must remain in place as long as you are in bed. Once ambulation begins, the SCDs are no longer necessary. There is also an exercise called “plantar extension/flexion” that is important even when you are using the SCDs as well as when you are up walking again.

Plantar extension/flexion exercises

Instructions: Begin with pointing your toes toward the bottom of the bed. Then point your toes up toward your face. Repeat this simple exercise at least 100 time an hour while awake.

Ambulation

Purpose: Mobility soon after surgery encourages early return of bowel function, promotes effective breathing, mobilizes secretions, improves circulation, prevents stiffness of joints, and relieves pressure.

Instructions: The morning after surgery, you will be instructed to be out of bed AT LEAST 6 TIMES A DAY. This can be thought of as twice after breakfast, twice after lunch, and twice after dinner. More often than that is encouraged, BUT IT MUST BE AT LEAST 6 TIMES A DAY. After you are discharged from the hospital, it is very important to continue on the minimum of walking at least 6 times a day.

Bathing

Purpose: To promote healing and maintain skin integrity.

Instructions: The first day you will be given a bed bath with the help of a nurse. You will be able to wash your own face and neck area. The nurse will help with your arms and trunk areas because of all the IV s and tubes you will have in place. Washing your back and legs will require assistance by the nurse for the first several days. Each day as tubes are removed, you will be expected to wash yourself as much as possible. This will help you feel comfortable with the suture line on your abdomen. When your surgical dressing has been removed, you will be able to wash the incision with soap and water and pat dry. When all drains are out you will be able to take a shower. Tub baths are not to be taken until your incision is completely healed.

Meatal/Catheter Care

Purpose: To decrease the risk of infection from the indwelling foley catheter and later scarring.

Instructions: Using soap and water, wash the around the meatus at the entry point of the foley catheter. Males should place a small amount of bacitracin ointment around the meatus. While you are in the hospital, this will be done 3 times a day. When you go home, you can do it twice a day. Continue this until the foley is removed in the clinic by the doctor.

Foley catheter holder

Purpose: To secure the foley catheter and offer stability as well as help prevent meatal irritation from movement of the foley while you are up and about and moving around.

Instructions:

• Position legband high around the thigh with the product label pointing toward the outside of the leg.
• Stretch legband in place and fasten Velcro tab.
• Place foley catheter over the green tab. Leave an ample loop in the catheter above legband to avoid traction.
• With catheter in desired position, insert narrow green Velcro tab over the catheter and through the square opening so that Velcro tabs overlap.
• Pull Velcro tabs in opposite directions and secure in place. To readjust, simply raise either side of the tab, adjust, and refasten tab.
• Reposition the band every 4 - 6 hours to prevent pressure points on the leg. This can be done by changing to the other leg or by raising or lowering the leg band.
• The legband can be washed and dried without any problems to the Velcro.

Leg Drainage Bag

Purpose: To provide a drainage collection bag and to promote comfort during the daytime or while walking.

Instructions

• The nurse will help with the initial set up and will help determine the length for the tube that will best suit you. A connector will be attached to the tubing on the leg bag and once that is attached, it cannot be removed.
• Put buttons of leg bag strap through slits at top and bottom of bag with buttons facing out to prevent a pressure point on your leg.
• Position bag with soft backing against the skin. Adjust the straps until comfortable. Excess strap may be trimmed with scissors.
• Ensure that the outlet valve at the bottom of the bag is firmly closed before connecting it to your foley. Simply flip it upwards toward the bag until it snaps firmly in place.
• Attach urine bag to end of catheter by inserting tapered connector snugly into the catheter port.
• Dribbling of urine can be avoided by bending to create a kink in the catheter just below the tip and holding it while you disconnect the tubing from the catheter. Care should be taken to keep the tips clean while connecting the leg bag tubing to the catheter so as not to introduce bacteria into the system.
• To drain the bag, simply flip the clamp downwards. The flexible outlet tube can be directed to control the outflow of urine. You do not have to disconnect the leg bag from the foley to empty it. You can easily reach it by raising your leg up to the edge of the toilet and empty the bag directly into the commode. This will avoid bending over and causing discomfort.
• The connector should be washed with soap and water after each disconnection and covered with the gray cap that is provided. The gray cap can be soaked in soap and water when not being used. Rinse with warm water before placing on the connector.
• To keep the leg bag clean, rinse daily with equal parts water and vinegar to keep free of bacteria and odor. No matter what drainage source you use, it should be cleansed daily with equal parts vinegar and water.

DRAINS

Immediately after surgery there will be several drains that will be placed in surgery and will exit through the abdominal wall and will be for drainage of excess fluid from the surgical area itself.

These drains are called Jackson Pratt drains and will be taken care of solely by the nurse and physician. The amount of drainage will be monitored and recorded by the nurse. When the physician determines the drainage has decreased enough, he will remove the drains; usually about 3 or 4 days after surgery.

URINARY CATHETERS

You will have a foley catheter in your urethra and may have a second catheter (suprapubic) that will be placed in your new bladder and will come out the abdominal wall. The urethral catheter will remain in place for 14 to 21 days after your surgery. You will return to the clinic to have it removed. The suprapubic catheter will most probably be removed before you leave the hospital. Please refer to the section "Catheter Care and Irrigation" for more information on these two catheters.

PELVIC FLOOR EXERCISES

You will regain control of the muscle that controls urinary leakage gradually over a period of time. There is an exercise that you will be taught that will help to rebuild the strength in this muscle. It is a contracting/relaxing exercise. By performing this exercise consistently on a daily basis, many people notice marked improvement after 3 to 4 months.

Finding the muscle:

The muscle that you use to hold back gas is the one you want to exercise. Some people find this muscle by voluntarily stopping the stream of urine.

Doing the exercise:

• Squeeze the muscle and hold for 10 seconds.
• Relax the muscle for 10 seconds.
• It is just as important to relax as it is to contract this muscle.
• Do 15 exercises in the morning, 15 in the afternoon and 20 and night. You can also exercise 10 minutes three times a day. Try to work up to doing 25 exercises at one time. Initially you may not be able to hold this muscle for 10 seconds. However, slowly, over several weeks, you will build up to 10 second holds.

Sometimes it is difficult not to have the stomach muscles involved in this exercise. To find out whether you are also contracting these muscles, place your hand on your stomach while you do your exercises. If you feel your abdomen move, then you are also using these muscles.

Results: You will build strength in this muscle slowly - do not expect results right away. In about 4 weeks of consistent exercise, you will notice less urinary leakage. In two months, you will see an even bigger difference.

INSTRUCTIONS FOR AFTER DISCHARGE TO HOME

CATHETER CARE AND IRRIGATION

Your nurse will be spending a lot of time with you in counseling. She works very closely with your doctor and your nurse while you are in the hospital in relation to how you will take care of the catheters when you are discharged. She will coordinate her care with your doctor and with the nurse in the Urology Clinc as well.

The nurse you have here in the hospital will teach you how to irrigate your catheter and will give you instructions for the care required to maintain patency and flow of urine through the catheters.

Should the suprapubic catheter remain in after you are discharged, you will be given instructions of how to irrigate it.

The urethral catheter is the one you will definitely have when you are discharged. This should be anchored to the thigh at all times with a catheter strap. (Instructions on how to use a catheter strap are explained earlier in this pamphlet). If the catheter falls out, contact the Urology Resident on call here at the University Hospital immediately. He will be able to instruct you as to what to do in relation to having it replaced.

You will be given several urine collections bags. One will be a leg bag which you will be able to use during the day time. You will be given a larger bag for drainage during the night. Instructions for the use of these are also explained earlier in this pamphlet.

Irrigation

Your Neo-bladder should be irrigated 3 times a day when you go home with sterile water. While in the hospital, it will be done more frequently. Your nurse will have hands on instruction with you about proper technique for this procedure and will review it with you till you are comfortable doing it yourself.

You will need sterile water for the irrigation at home. The water MUST be STERILE. DO NOT USE TAP WATER. Tap water often has microbacteria in it that can cause infection if it is instilled directly into your new bladder. Your nurse will give you a bottle of sterile water to take home with you, and you will have several liters sent to your home by the home care nurse. The irrigation fluid will not have antibiotics as did the irrigant used in the hospital.

If you have any pelvic discomfort or cramps, or if the catheter is not draining freely, you must irrigate immediately to prevent any blockage of the catheter that could be caused by the mucus that collects in the new bladder.

The following procedure should be used when irrigating the catheter.

• Wash your hands
• Draw up 40 to 60 cc of sterile water in the syringe provided for you
• Hold the tip of the catheter upright between the thumb and first finger. Place the tip of the syringe into the catheter.
• Gently inject the sterile water into the catheter. Do not force the water in as this can cause discomfort.
• Gently withdraw the water from the catheter with the syringe. Watch for mucus. (mucus is what you want to see.)
• This process may be repeated several times. Once you can no longer withdraw mucus, you may stop for that particular irrigation. However, you still must irrigate three times a day.
• After you have completed each irrigation, wash the tip of the syringe with soap and hot water. Cleanse the tip with alcohol and recap it.
• Clean your syringe after each irrigation with a small amount of the sterile water and store your supplies in a clean place.
• If you go home with the suprapubic catheter, your nurse will show you how to irrigate both of these.

Activity

• You should continue walking when you return home, gradually increasing the distance. Walking will help you to build strength.
• Take planned rest periods during the day. The best gauge is your own body and how you feel.
• You may walk up and down stairs when you return home, but take them slowly. Plan activities so you need only go up and down several times a day. Again, you will gradually build up to your pre-op routine as you regain your strength.
• Avoid heavy lifting (greater than 5 pounds) or strenuous activity for about 4 weeks. Heavy lifting can cause increased abdominal pressure which can put a strain on your incision and could create a small hernia. If you need to brace yourself to pick something up, it is too heavy.
• Avoid bending. This is tiring and also increases abdominal pressure. If you must pick something up, bend at your knees (not at your waist) and stoop to pick up the object.
• Do not drive for four weeks or as directed by your physician. A good rule is to not drive till you are pain free. This is because when you are having pain, it will change the way you would react to something. Take car breaks every couple hours for extended trips. Get out of the car and walk around.
• Do not drive any motorized vehicle, or sign legal documents while taking narcotic pain medications. The narcotic medication may cause alteration in visual perception and impair judgment.

Bathing

Gently wash your incision with soap and water. Pat dry. You may take a shower but do not tub bath until full healing of the incision. which should be in several weeks.

If you have white strips called "steri-strips" on your incision, they should fall off in about seven days. If they do not fall off, you may remove them.

Diet

Return to normal eating habits. A well balanced diet is encouraged to promote healing.

Drink fluids on a regular basis to assist in flushing mucous from the urine. The mucous is produced by the piece of bowel that was used make the neobladder. Drinking fluids will keep the mucous thin and prevent plugging of the stoma. It is best to drink as much as 8 glasses of water a day.

Special Considerations:

Avoid constipation. If you do become constipated, there are alternatives to consider. You can increase the roughage you take in your diet. Drinking prune juice or orange juice is also good. You can take an over the counter laxative of choice if you need to such as metamucil or milk of magnesia. You may be prescribed Colace which is a stool softener, not a laxative. With Colace, it is recommended that you drink at least 6-8 glasses of water to enhance the effectiveness of Colace. Should constipation become a problem, call your physician whose number is on the back of this pamphlet.

You may be prescribed a drug that will help to decrease mucous production in your bowel. Even though part of your bowel has been used to create a new bladder, it will still continue to produce mucus for some time. You may take this type of medication for as long as a year.

REASONS TO CALL YOUR DOCTOR

• The incision becomes red, swollen, open, or there is pus-like drainage
• The skin around the incision is warmer than elsewhere
• There is an abnormal odor to your urine (Mucus is normal)
• There is decreased or absent urine output for 2 hours
• The catheter becomes dislodged
• Nausea, vomiting or diarrhea occur
• You experience severe pain that is not relieved by pain medication.
• You have chills or temperature greater than 101 degrees
• You have difficulty irrigating the foley before it is removed

HOME CARE

A home care nurse will be made available to visit you at home after discharge to see how you are managing your care and to answer any questions.

FOLLOW UP

You will have your first follow up clinic visit to have your foley catheter removed 3 weeks after the surgery. You will be given a prescription for an antibiotic to be taken around the days it is to be removed. The first dose starts the day before your appointment, the day of your appointment and then every 12 hours till the prescription is finished.

After your initial clinic visit, you will continue to be seen at intervals as determined by your doctor. You may still wish to be seen by your local physician for some of your concerns as they arise. However, we would like for you to keep in touch with the Urology Clinic here so we can follow your progress.

You will be receiving a medical alert bracelet. This will be important in the event of any emergency surgery. You have had a change in your internal anatomy and it is important for the physician or person giving you medical care to know this. You will receive information about this from the enterostomal therapist and she will give you directions on how to pursue obtaining this.

If you have any questions, please feel free to call your doctor here at the University of Michigan Hospitals. His number is listed on the last page of this pamphlet. If you need to reach someone after clinic hours or on the weekend, call the page operator at the University of Michigan Hospital,734-936-6267, and ask for the urology resident on call.

ADDITIONAL COMMENTS

Additional instructions are given on a case by case basis. Ask you health care provider if any other instructions are necessary in your particular case.

For Urgent or Emergent situations 24 hours a day, page the Urology Resident on call at 734.936.6267. They will contact the physician for you.