Department of Urology
Instructions For Care Following Cystectomy and Ileal Loop
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 pamphlet for you to use as a reference during this initial healing phase.
This will help you to understand some of the aspects of care during the first several days after your surgery. You will have seen the enterostomal therapist, for the marking of the Stoma before your surgery. She will give you a detailed packet of information about the surgical procedure and how to care for your stoma. This particular information will help you understand some of the other areas of care that are necessary to your healing.
Initial Post-op Treatments
The following are explanations of some of the care measures that are taken to help you in your 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 though your IV via a device referred to as a PCA (Patient Controlled Analgesia). This device also administers pain medication at a prescribed dosage and preset intervals. You may 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.
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.
- 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 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.
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 WHILE IN THE HOSPITAL
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 truck areas because of all the IVs 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 the 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.
- A red rubber drain may be placed in the stoma to maintain patency of stoma until the swelling goes down.
- Stents may exit through the stoma to drain urine and promote healing of internal sutures. They will remain in place until swelling subsides.
- Small abdominal drains will exit through the abdominal wall and will be used to remove drainage from the surgical area itself.
Instructions: You will not be required to do anything with the care of these drains. These will be taken care of solely by the nurse and physicians. The stents will be removed by the stoma therapy nurse (Ingrid) as directed by the physician. The red drain in the stoma will be removed by the nurse when the area around the stoma is no longer swollen. Amount of drainage from the abdominal drains will be monitored and recorded by the nurse. When the physician determines the drainage has diminished appropriately, he/she will remove the drains.
There will be a plastic pouch covering your stoma. Detailed instructions on how to care for this will be given to you by the stoma therapist, Ingrid. She has detailed instructions in a packet of information that she gives you. Your nurse will be reviewing these instructions and helping you to continue to learn how to care for the stoma. When you are discharged, there will be a home care nurse available to come to your home and work with you.
CARE AFTER DISCHARGE
- You should continue walking when you return home, gradually increasing the distance. The walking will help you 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 as soon as you return home, but take them slowly. Plan activities so you need only go up and down several times a day. 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 several weeks after you are discharged. Heavy lifting can increase 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.
- Avoid driving for four weeks or as directed by your physician. Take car breaks every several hours for extended trips. Get out of the car and walk around a bit.
- Do not drive any motorized vehicle, or sign any legal documents while taking narcotic pain medications. The narcotic medication may cause alteration in visual perception and impair judgment.
Bathing when you go home:
Gently wash your incision with soap and water. Rinse and pat dry. You may take a shower. Do not take a tub bath until the incision has healed completely.
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.
Once your incision has healed completely, you may take a tub bath with your pouch on or off. Try to choose a time when the stoma is less active if you choose to bathe with the pouch off. Wait a few hours for adhesive to dry after putting on a new pouch before getting into the water.
Return to normal eating habits; although small frequent meals are better tolerated at first.
You may notice that garlic, onions, spices or asparagus may cause an odor of your urine. If you notice and increase in odor, simply limit these foods in your diet if you choose.
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 to make the ileal loop. Drinking fluids will keep the mucous thin and prevent plugging of the stoma.
Even with a stoma you can ski, ride horseback, bowl, swim, and enjoy yourself in a variety of activities. Your stoma will not keep you from having fun. You should avoid weight lifting and contact sports such as wrestling or football, which could harm your stoma.
You can wear any clothing you want as long as it is loose around the area of the stoma. Tightness around the stoma can cause a rubbing effect and could start to bleed. You can wear belts.
If you were working before surgery, you should be able to return to work. Just remember to avoid heavy lifting.
The Stoma therapist has discussed this with you and has given you a list of resource centers across the country for your supplies.
The following are a few points to remember about what she has discussed with you.
- Always pack more supplies that you usually need.
- If you are traveling by airplane, train, or bus, always keep a carry on bag with your ostomy supplies with you. Do not check them with other baggage.
- If you are in a foreign country or climate. Check with your doctor or local stoma therapist, about foods and water.
- When you travel by car, fasten the lap-type seat belt below or above your stoma. Over the shoulder seat belts are referred.
- Keep your pouches in a cool, dry place.
Because of the importance placed on physical beauty, the idea of ostomy surgery can be threatening. At first it may be difficult to believe that an intimate relationship is still possible. So do not ever assume your partner is “turned off” by your stoma or pouch. Talk together about your feelings and your urostomy. Your partner may be afraid of hurting you and you need to let him or her know that sexual activity will not harm your stoma. Woman of childbearing age need to plan for birth control, at least until your doctor approves of a pregnancy after enough healing has taken place.
The following are a few basic tips to remember about sex:
- Empty your pouch first.
- Be sure you have a good seal around your pouch
You may choose to wear a pouch cover. Men may find it helpful to use a cummerbund; women may find it helpful to wear panties with an open crotch.
Please do not hesitate to speak with the enterostomal nurse or the doctor about any sexual concerns you have. They will be most helpful in assisting you through some of these very important issues and questions.
- For a man, if your scrotum is swollen, wear supportive briefs or an athletic support. When resting, elevate your scrotum on a towel.
- Avoid constipation. If you do become constipated, take an over the counter laxative such as milk of magnesia. Drinking prune juice or orange juice may also help. You can also increase the roughage in your diet. You may be prescribed Colace, which is a stool softener, not a laxative. It is recommended that you DRINK AT LEAST 6-8 GLASSES OF WATER A DAY TO ENHANCE THE EFFECTIVENESS OF COLACE. Should constipation become a problem, call your physician whose number is on the back of this pamphlet.
- If for any reason you need to collect a urine specimen, you will need to put a catheter into the stoma. Do not give a urine sample from the pouch.
- Simple skin irritation can be treated with karaya powder or Stomahesive Powder. Your E.T. nurse will speak to you about this in more detail. If skin irritation continues or appears with severe itching or pimples, this may indicate a yeast infection. Call your E.T. nurse right away should this occur when you are at home.
- If you notice a decrease in the amount of urine from your stoma, it may be that it needs to be irrigated. If this occurs, you should call your doctor or an E.T. nurse for further instruction.
- The E.T. nurse will give you instructions in detail about supplies that you will be getting at home.
Stoma Care for ileal loop:
- Wash hands before and after emptying the stoma bag. Empty the bag when it is one-third full. Otherwise it will get too heavy and can become disconnected from the wafer.
- At night, connect the stoma bag to a drainage bag. During the day, wear the stoma bag and empty it frequently. Every morning, rinse the night collection bag with equal parts water and vinegar to prevent growth of bacteria as well as decrease odor. Place the tip of the collection bag in a container that will help keep it clean.
- Refer to the instructions for care of the stoma you receive from your nurse.
Reasons to call your doctor:
- The incision becomes red or swollen
- The skin around your incision feels warmer than elsewhere and is slightly red.
- There is drainage or pus from your incision or your incision comes open.
- The skin around the stoma becomes red and itchy and does not improve with soap and water cleansing.
- The stoma begins to look dark and not a healthy reddish pink.
- The urine becomes bloody or you begin to pass clots.
- There is a decrease in urine from the stoma along with feeling “full”.
- Nausea and vomiting occur
- You have chills or temperature greater than 101 degrees
- You experience severe pain that is not relieved by pain medication.
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.
It is also important to keep in touch with your E.T. nurse on a regular basis. She will be able to offer you advice and help you from time to time with many of the aspects of your care with your new stoma.
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 as well.
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.