Your surgery is called a radical cystectomy and a bilateral pelvic lymphadenectomy. A video clip of this surgery can be viewed at on our bladder cancer page. Prior to surgery, your surgeon may ask you to clean out your bowels (similar to having a colonoscopy) although for most patients this is not necessary. You will be asked to stop all blood thinners which includes, aspirin, plavix, Coumadin or warfarin, antiinflammatories other than Tylenol, Vitamin E, and fish oil at least one week prior to the surgery. You will also be asked to not eat OR DRINK ANYTHING after midnight prior to surgery. The anesthesiologist will tell you if you are to take any of your medications prior to surgery (such as high blood pressure medications). No changes in diet or exercise are necessary prior to surgery.
For men, the surgery removes the bladder and pelvic lymph nodes and most of the time, the prostate and the seminal vesicles. For women, the surgery removes the bladder and often the uterus and pelvic lymph nodes. It is necessary to remove the entire bladder because the cancer cells tend to be scattered throughout in an unpredictable way. The pelvic lymph nodes, which filter impurities from the bladder, are usually the first place the cancer spreads beyond the bladder. Fortunately, your body will not miss these few lymph nodes since there are many others throughout the body. For men the prostate is standardly removed because approximately 1/3 of the time it will harbor bladder cancer cells, and up to 2/3 of the time it will contain a separate cancer which is prostate cancer. For women, the uterus is removed because it is very close to the bladder and leaving this behind risks leaving cancer cells behind. The surgery typically takes around 4 hours although this may vary from patient to patient.
Surgery can be done either open or robotically. Currently, there are no studies to support one approach being better over another and the decision will be up to you and your surgeon. Patients who have had previous abdominal surgery (such as colon surgery or a hysterectomy) may not be candidates for the robotic surgery because of scar tissue in the abdomen. The robotic surgery does take slightly longer than the open surgery (6 vs. 4 hours), but may result in less blood loss and a quicker recovery, although again this remains unproven.
The Hospital Stay
After surgery, you will go to an inpatient floor for your recovery. It is rare for patients to go to the intensive care unit after this type of surgery. You will typically have an IV in your hand or arm and often times one in the side of your neck. In addition, if you hve an ileal conduit you will have a urine collection bag over your ostomy and a drainage tube on the left side of your abdomen called a JP drain. It will be hooked up to a small bulb that provides gentle suction (it looks like a small hand grenade) The JP drain will drain any additional fluid inside the abdomen and typically is removed just before you go home. If you have a neobladder reconstructed then you will have the JP drain as well as 3 additional tubes on the right side of the abdomen. The 3 additional tubes include 2 very small stents that go inside the skin, into the new bladder and up to the kidneys. These will be removed prior to going home. They allow for proper healing of where your ureters are reconnected to your new bladder. The other tube is the suprapubic tube which will be removed when the urethral catheter is removed ( in about 3 weeks).
You will be expected to walk the day after surgery and this is very important to prevent blood clots and to help the bowels recover. Also the nurses will ask you to work on deep breathing and coughing to prevent pneumonia. Patients usually begin to drink a few liquids on the second day after surgery. Nothing is allowed by mouth except medicines the day of or the first day after surgery to allow the intestines time to heal. Typical hospital stays are 5 to 7 days depending on how fast the intestines begin to wake up, which means being able to eat and drink without nausea and passing gas and stool. Pain is controlled by an IV pain pump which you control called a PCA. Typically, we use morphine for pain control unless the patient has had a bad reaction to it in the past. If this is the case please inform your doctor.
When you are discharged from the hospital, you will have 2 catheters and 2 bags. You will also be given a prescription for pain medication, stool softeners, and antibiotics. Occasionally other medicines may be prescribed. Your main restriction will be to NOT LIFT ANYTHING OVER 20LBS. Otherwise, there are very few restrictions, you may eat or drink what you like although your appetite will not be very good and your taste may be altered (patients often describe a metallic taste), however, what is most important is to drink fluids. Gatorade is an excellent choice since it helps to replace important minerals your body may lose. When you go home you again will be expected to walk, you can go up and down stairs, and get in and out of a car. If you need to ride in a car for more than 1 hour we recommend stopping and walking for 5 minutes between every hour of driving to help prevent blood clots. Typically, we will set up home health care prior to your discharge so that when you get home a nurse will visit your house once a day to check on you. If you do not wish for home health care we do not have to arrange this.
For patients with neobladders, you will be asked to flush your catheter twice a day. You can flush either the catheter coming from the urethra (penis in the male or vagina in the female) or the catheter coming out of your side. When you withdraw from the catheter you may not get any fluid back this is ok as long as it flushes easily and the catheter is draining. If you get pain when flushing, stop flushing and contact us.
YOU SHOULD CONTACT US BY calling our office during the daytime (8:30am-4pm Mon-Fri) at 913-588-7564 or at night or on the weekends at 913-588-5000 and ASK TO PAGE THE UROLGOY RESIDENT ON CALL. If you do not receive a call back within 30 minutes please call again, or if you cannot reach anyone in the office and need immediate attention call 913-588-5000 and again ask to page the urology resident on call.
Things to Notify Us About
When you are discharged from the hospital, you may travel in a car or a plane, but you should not drive until the catheter has been removed. You should not drive until you have stopped taking any pain medications and you have been evaluated by your doctor.
Generally, you should not plan to return to work for at least six weeks after the operation. Everyone’s recovery time is different so you should talk to your doctor.
Patients may wish to read a blog written by one of Dr. Holzbeierlein’s patients, which details his experience with radical cystectomy and neobladder reconstruction. This can be found at http://billingsbladderblog.blogspot.com/. In addition, we have patients who are willing to speak to others on the phone about their experiences. Please ask your doctor or nurse for this information.
For questions regarding this information, please contact our office at the following:
Dr. Jeff Holzbeierlein (913) 588-7564
Jena Hayes, R.N. (913) 588-3118
RADICAL CYSTECTOMY AND NEOBLADDER HOME CARE INSTRUCTIONS
For men who have had a radical cystectomy and neobladder surgery, your bladder and pelvic lymph nodes and your prostate and seminal vesicles have been removed. For women, your bladder, uterus, and pelvic lymph nodes have been removed. An internal reservoir to collect urine from your kidneys has been made from a piece of your intestine. This is called a neo-bladder. To help you heal more quickly and be more comfortable after surgery, please follow these instructions carefully.
Foley Catheter and Suprapubic Tube
After surgery while your new pouch is healing, a tube called a Foley catheter drains the urine from your pouch into a leg bag or a bedside bag. A second tube called a suprapubic tube, enters through your abdomen into the new pouch and is also connected to a leg or bedside bag. It is common to have some redness around this tube as well as some green crusting. If the redness is spreading or you have fever contact the doctor’s office or show it to your home health care nurse. It is rare for these tubes to get infected. You will use the leg bags during the day and the larger bags when you sleep at night. The catheters are left in place until two or three weeks after you are discharged from the hospital. A few days more or less will not affect healing.
*It is important to clean the bags with soap and water every day.
*Check to be sure that urine is collecting into the drainage bags.
*Bring a Depends Undergarment with you to clinic the day the catheter is to be removed and expect to wear a pad for several months after surgery.
Irrigating Your Foley Catheter
The intestine used to make your new bladder produces mucous. This is normal. It does not mean you have an infection. You will need to keep the inside of the catheter tube clean to prevent mucous from blocking the flow of urine through the tube. This is called irrigating the catheter. You will need to irrigate every morning, afternoon and evening before bedtime. You may need to irrigate more often if the tubes are not draining well or become blocked. The catheter is blocked when you notice urine leakage around the catheters instead of into the urinary bags.
Supplies you will need for irrigation: *Piston syringe, normal saline, Kelly clamp, leg bags or night bags.
You can make your own saline at home if you need to here is the recipe.
Take 1 liter of distilled water and put it in a pot on the stove. Bring the water to a boil and add 1 teaspoon of salt to it and stir until the salt is dissolved. Allow the mixture to cool and pour into a container and store it in the refrigerator until use.
Activities at Home
*You may shower the day after you go home but do not take tub baths.
*The main incision and the places where the drains were removed usually require no dressing.
*Avoid lifting anything over 20 pounds for six weeks. We do not want you to strain for six week to allow your main incision to heal completely.
*Daily exercise such as walking help you recover more quickly. Avoid heavy exercise such as jogging, swimming, weight lifting or golf until you are at least six weeks from surgery.
*Avoid sitting for long periods of time with your feet on the floor. Keep your feet propped up on a stool. Get up often to walk. This is important to help your blood circulate and prevent blood clots.
Your Diet and Bowel Function
*When you go home, eat the foods you normally eat. Because most people are a bit anemic after the operation, it is a good idea to eat iron-rich foods such as red meats, spinach, and other green leafy vegetables for the first month or two.
*It is common to have diarrhea. You can help control the diarrhea by eating high-fiber foods like vegetables, fruits and whole grains and also by eating yogurt and drinking buttermilk.
*You can expect to lose 20-25 pounds after surgery. If you are concerned about weight loss, drink products like Ensure or Carnation Instant Breakfast. Eating six smaller, nutritious meals daily can also help.
It is very important to avoid constipation. Take a stool softener such as Colace once or twice a day. Drink at least eight glasses of water or other fluids each day to help prevent constipation and prevent dehydration. This is very important in the healing process. If you require a laxative, take one to two tablespoons of Milk of Magnesia at bedtime.
Returning to Work
Generally, you should not plan to return to work for at least six weeks after the operation. People’s recovery times vary and you should talk with your surgeon about the best time for resuming a work routine.
You will need regular check-ups for the rest of your life. You can have these check-ups at KU Medical Center or at your Urologist closer to home. These visits usually include blood work, a physical examination, ultrasounds or CT exams. Your Urologist will talk to you about your visits. The frequency of visits and testing will depend on your staging as well.
Call your Doctor if…
*Your temperature is more than 101 degrees
*Your feet or ankles are swollen
*Your calves are tender and it doesn’t go away
*There is redness, inflammation, or a foul smell or drainage around your wound
*Your catheter comes out
*You can’t irrigate the catheter
*You have nausea, vomiting or diarrhea
Numbers to reach your Surgeon:
IF YOU HAVE A TRUE EMERGENCY, DIAL 911.
*Contact Dr. Holzbeierlein’s Office from 8:00 a.m. to 4:30 p.m. at(913) 588-7564. The resident doctor will call back between 4-7 p.m.
*For nurse questions, call Jena Hayes , R.N. at (913) 588-3118. She will call back between 4-6 p.m.
*For evenings, nights, week-ends and holidays, call (913) 588-5000. Ask the operator to page the resident on call.
Care of the Substitute Bladder
Immediately after surgery you will have a Foley catheter because the new connection between your neobladder and your urethra needs time to heal. You will have a Foley catheter to drain your urine from you bladder into a bag outside your body. Generally, the catheter, which is held in place by a water-filled balloon, is left in place for two to three weeks after you are discharged from the hospital.
The catheter bag is strapped to your leg during the day. Slacks or sweat pants will hide it. At night you will attach you catheter to a larger bag that will allow the urine to drain completely from your bladder while you are asleep. During you hospital stay after surgery, you will be taught how to take care of your catheter. You’ll also be taught how to irrigate your bladder while the catheter is in place. This is necessary because your new bladder is made from a piece of intestine that normally produces mucus. Irrigating you bladder rinses away the mucus so your bladder drains your urine properly.
Several weeks following your surgery, you will return to the Outpatient Department for a cystogram. This is a test using a special dye to examine your new bladder. The physician will determine that the bladder is water tight. Following this you will be given instructions on the care of your new bladder. Initially the sphinctermuscle is weak and urinary leakage may be a problem. The following steps will as you regain your urinary control. Be patient! This may take months:
After the catheter is removed, you will initially experience leakage of urine which is initially severe but improves over time. Your urinary control will improve over the next three to six months. You will need to wear an incontinent pad such as Depends Undergarments during those months. Within 3months most patients have control that is usually satisfactory during the day, although leakage at night tends to continue for a year and can be permanent. Some people will continue to have mild leakage or stress incontinence when they bend over, cough, lift, or exercise hard. Wearing a small pad usually helps to avoid wetting you’re under garments. If daytime incontinence continues to be a problem after the healing process, option to improve this are available and can be discussed by your doctor.
Empty your bladder every 2 hours through the day and every 2 hours through the night. You will need to set your alarm. The urge to urinate or bladder fullness may not wake you. You will also be asked to urinate and catheterize yourself after urinating twice a day during this week. You will also need to irrigate yourself through the catheter to wash out any mucus once a day during one of these catheterizations.
Empty your bladder every 3 hours through the day and every 2-3 hours during the night. You will now only need to catheterize once a day after voiding as long as you are able to urinate and empty. This means that less than 100ml (about 3 oz) comes out after catheterizing. You will still need to irrigate during this catheterization.
You will have a follow up visit with the doctor after 1 month at which time he will check labs and address any questions or concerns you may have. REMEMBER IT IS NORMAL TO STILL BE LEAKING AT THIS TIME! DON’T GET DISCOURAGED THE LEAKING WILL GET BETTER!
Week 5 and on:
Empty your bladder every 3-4 hours through the day and every 3 hours during the night. You no longer need to catheterize or irrigate unless you are unable to irrigate or if you become clogged with mucus.
Leakage during your sleeping hours can be a problem at first. As you sleep and become relaxed, your external sphincter may also relax causing leakage with a full bladder. To avoid the frustration of night-time incontinence, set your alarm so that your bladder does not overfill. It is also helpful to sleep on an absorbent pad so you do not have to change bedding if you have a large amount of leakage. Eventually, you will increase the intervals between urination until you are familiar with the capacity of your Studer bladder.
2. CATHETERIZATION AND IRRIGATION
Occasionally, you may not be able to empty your bladder completely. It will be necessary for you to check the bladder residual for several weeks following your surgery to be sure you are emptying completely. During this time, you can irrigate the new bladder to be sure you are completely emptying the mucus in your urine. This is best done at morning and bedtime.
Assemble you catheterization and irrigation equipment:
a. 14 or 16F catheter
b. Water soluble lubricant such as Surgilube or KY jelly. Not use petroleum based products such as Vaseline
c. Normal Saline
d. Irrigation Syringe (60cc)
e. Measuring Container
Wash your hands with soap and water. Rinse your catheter inside and out with warm tap water.
Lubricate the tip of your catheter freely.
Gently insert the catheter into your urethra as you have been shown. Never ram or force the catheter at any time. Continue to advance the catheter until there is urine flow.
Hold the catheter in place until all urine has been emptied. Record the amount.
Holding the catheter in place, attach the syringe to the catheter and irrigate using the same technique you used with the SP tube. Empty the contents of the syringe and repeat. Slowly remove the catheter when saline has returned. Note the amount of mucus on your flow sheet.
Wash the catheter in warm water using antibacterial soap. Rinse well and lay the catheter on a clean towel to dry.
3. KEGEL EXERCISES
Kegels are done to increase the strength of the pelvic floor muscle and sphincter. To identify the muscle, tighten to cut off urinary flow.
It is important to keep thigh, abdominal, and butt muscles relaxed during this exercise. When the correct muscles are tightened, you will feel a slight “lifting” of the pelvic floor. Follow these steps:
a. During urination attempt to cut off your stream for a couple seconds. You are tightening your sphincter muscle when this is occurring.
b. Outside of urination, slowly contract your sphincter to a count of 5 and slowly release your muscle to a count 5.
THREE OF THESE CONTRACTIONS EQUAL ONE SET.
Repeat a set 4 or 5 times a day. It is important to do a set during different activities- lying, sitting, standing, and walking.
c. Do not “over-do” these exercises. Muscle fatigue can occur if you do too many. This will cause soreness and may increase your leakage.
4. Your urinary control will gradually improve and sometimes is great from the beginning. To avoid the frustration from accidents and to allow greater mobility, you may purchase incontinence pads such as Depend’s Poise for women or Guards for men. These are available at any large pharmacy or grocery store.
We want to hear from you if you experience any of the following:
*Fever over 101 degrees
*Flank pain (pain over your kidneys)
*Severe pain over your bladder area
*Inability to empty or catheterize your bladder
*Excessive blood in the urine
CARE OF AN ILEAL CONDUIT
For patients who have chosen to have their urinary reconstruction performed as an ileal conduit the following information may be helpful in the recovery/adjustment period. An ileal conduit is a piece of small intestine (ileum) that is harvested from your own intestinal tract. It is usually about 12cm in length. The remaining bowel is reconnected at the time of surgery so that stool continues normally. Most patients have no side effects from the removal of 12cm of small intestine, although rarely some patients may have chronic diarrhea. This can be treated and should be brought to the attention of your doctor.
The small piece of intestine is connected to the ureters (the tubes from the kidneys through which the urine drains). This connection is inside the abdomen. The other end of the intestine is brought up to the surface of the skin as a stoma.
A stoma is a small piece of intestine open in the middle allowing urine to flow out of the body into a bag which fits around the stoma.
A wafer fits around the stoma and attaches to a bag in most cases. There are many different types of ostomy appliances including 1 piece and 2 piece appliances. Your stoma will change with time and you may need to change the type of your appliance including the brand based upon your stoma and your preference. Typically over a 6 month time period the stoma will shrink down to its permanent size. At that point you can order pre cut stomal appliances. Prior to that you will need to cut out the opening in the appliance based on the size of your stoma. You will be shown how to do this during your hospital stay by one of our stomal therapists. When you go home a home health care nurse will continue to assist you with changing your appliance. If you have additional questions are problems you can contact one of our stomal therapists or schedule an appointment with them by calling 913-588-5475.
An ileal conduit should not prevent you from doing any activity. Patients can work, garden, play sports and even swim with their appliance. Even lake water is safe! Some activities such as swimming may result in needing to change the appliance sooner. Ileal conduits also known as urostomies do not make noise, smell and can be concealed under loose fitting clothing very easily. Most patients continue to enjoy an excellent quality of life and do not have to change any of their activities or work.