Dr. Sean Elliott, MD
Reconstructive Urologist
Cystectomy and Indiana Pouch Post-operative Instructions
Read carefully
These instructions are specific to Cystectomy with Indiana Pouch. If your surgery is Cystectomy with Ileal Conduit then click here.
Urinary Drainage
You will be taught in the hospital how to care for your pouch. You will learn how to flush the catheters and make sure it is remaining empty. You may also have stents that need to be cared for. It is important that all of these tubes be draining continuously so as not to put pressure on the stitches we used to create the pouch and connect the ureters to it.
What are all of these tubes? You might go home with multiple tubes, depending on the details of your surgery. Here is a description of all of them.
1. Stoma catheter: Your Indiana pouch has a stoma (sometimes called a Mitrofanoff) that you will eventually place a catheter through 5-6 times a day to empty your pouch. During the immediate post-operative period we keep a catheter in this all the time, while it heals. This is usually attached to a bag for drainage. It will be removed after 1 month.
2. Suprapubic catheter: To ensure that your Indiana pouch is empty all the times while it heals, we place a second catheter, in addition to the stoma catheter. This catheter exits directly through the wall of the pouch and out your abdominal wall skin. It will be removed after 1 month.
3. Stents: These are two tubes that go from the kidneys, down the ureters, through the pouch, and out your abdominal wall. We often remove them while you are still in the hospital but occasionally leave them for a month. It is hard to connect bags directly to them so we often control the urine leakage from them using a stomag pouch that is fitted over them. When we remove these stents it is painless and the hole closes up on its own.
4. JP drain: The JP is a suction drain that is connected to a lemon-sized ball the provides the suction and holds the fluid drainage. This fluid is urine, blood, or other fluid that is around the outside of your Indiana pouch. We almost always remove this before you go home. The skin hole closes on its own.
Drainage options:
1. Leg Bag: You can connect the urine catheters to extension tubing that runs to a leg bag. The leg bag holds 500mL. This bag straps onto your lower leg like a holster and hides under your pants.
2. Overnight Bag: You can connect the urine catheters to extension tubing that runs to an "overnight" bag. This bag holds up to 3000mL and allows you to get a full night's sleep without worrying about filling your bag.
What happens if I don't empty the bag often enough?
1. Urine can back up into your pouch and cause it to burst. This is a major complication and could cause an abscess in your belly or peritonitis.
2. Urine can back up into your kidneys causing kidney damage
3. Urine can back up into your kidneys causing a kidney infection.
Catheter Irrigation / Flushing
Irrigation of catheters. Your pouch makes mucous. This mucous can cause pouch infections, poiuch stones and can plug the catheter. You will need to irrigate (flush) your bladder with water or saline once a day for the rest of your life to prevent this. In the first month after surgery, we use sterile saline to irrigate, but after the first month you can switch over to tap water. When someone is wearing a catheter all time (i.e., a Foley) their pouch makes even more mucous. So, for the first month after surgery, when you have the catheters in all the time, you will need to irrigate the bladder twice a day.
You should irrigate through both catheters every time, even if one of them has a plug in it and is not connected to a bag – it is important to keep that one from getting clogged too. When you irrigate it is important to clamp (plug) one catheter while you flush the other catheter.
Description of Technique of Irrigation click here
I have debris in my drainage tubing. It is normal to have strings of mucous or small clots (scabs) in the drainage tubing. Most of this gets flushed out during the irrigation process but some will flow out during the day.
What if one catheter isn’t draining? If you have 2 catheters hooked up to 2 bags and one drains more than the other, but both are draining then this is normal – one catheter is probably in a lower spot in your pouch and urine is preferentially going out that one due to gravity. But, if one catheter is not draining at all then it is very important that you get it draining again using catheter irrigation. Follow the steps described above to irrigate that catheter. If you cannot irrigate it, try irrigating the other catheter to get rid of as much mucous from the bladder as you can and then irrigate the clogged catheter again. If you still cannot irrigate it, it might just be stuck against the pouch wall; try moving it back and forth (in and out of the pouch) a few inches and irrigate as you do this. If you still cannot irrigate it, then it might be clogged with mucous, and you should call our clinic for further instructions. As long as one catheter is draining this is not an emergency and you can call during business hours. If neither catheter is draining, then this is an emergency; you should call our clinic line to speak with the doctor or nurse on call to receive further instructions.
I am bypassing urine around the outside of the catheter. This is unusual after Indiana Pouch surgery and is a sign that one of the catheters may be clogged and your pouch is too full. You should irrigate both catheters very soon to ensure that the pouch is draining well. If they do irrigate well, then this is not an emergency; call our clinic during normal business hours for further instructions. In this case, the leakage is usually around the suprapubic catheter and the cause is that we did not cinch the opening around that catheter tight enough when we inserted it. This should self-correct over time.
Stents
What are the stents? During your surgery we sewed your ureters to the back end of the pouch. The ureters are the two tube that carry the urine from your kidneys. In order to protect this connection and allow it to heal, we placed stents on both sides. These are small silicone tubes about the thickness of a cell phone charging cable. They allow the urine to drain past the stitched connection.
When are the stents removed? Depending on your medical history we may either remove those stents before you leave the hospital or may leave them in place for 4-6 weeks. Typically, we remove them in the hospital whenever we can. Reasons we leave them longer include prior radiation, malnutrition, immunosuppression, or scarring of the ureters, all of which can delay healing of this connection.
How are the stents removed? These stents have coils in the upper end that keep them from falling out of the kidneys. On the lower end we typically stitch them to the intestine on the outside of your stoma. To remove the stents, we cut the stitch and slide the stents out at the bedside. This does not hurt.
Can I accidentally pull out the stents? Even though the stents are stitched in place, they can fall out or accidentally be pulled out. When you are changing your stoma appliance it is important that you handle the stents carefully. When you are int he hospital you should receive instructions about how to hold onto the stents while removing the old appliance and how to tuck the stents into the new appliance as you put it on.
Why was I instructed to flush the stents? Occasionally we may ask a patient to flush the stents twice a day to keep them draining well. This is usually not necessary but in some people their pouch makes a lot of mucous and this clogs the drainage of the stents. If you were asked to flush your stents then you should have been provided with the syringes and adapters to do this.
Stoma
Your Indiana Pouch has a stoma that is sewn either to your navel or to a spot on your right abdominal wall. The opening is normally pink (like intestine) and about the size of a pencil eraser. It will have a catheter exiting it after surgery. We will remove this catheter after one month and teach you how to catheterize the stoma and empty your pouch. This stoma may develop a black scab on it, which you can gently wash with soap and water in the shower; do not scrub this off, as it will eventually fall off. The stoma may produce some mucous; this is not pus and should not worry you.
Diet
By the time you leave the hospital, you should be back on your regular diet. But, because we removed some intestine during surgery, you may have a better appetite some days than others. The most important thing is that you stay hydrated. So, even if you don’t have much of an appetite, make sure that you drink at least 8 glasses of fluids a day.
Bowel Movements
Because we removed some intestine during the surgery, your bowel movements may be irregular for a few months. You may be constipated one day and have diarrhea the next. Narcotic pain medicines can cause constipation, so we send people home from the hospital with a stool softener (e.g., docusate or Colace). It is important to stay ahead of the constipation because it can become so severe that it causes major abdominal pain and a trip back to the hospital. If your stools are too loose, then you can cut back on or stop the Colace. If your stools are still too loose, then you can take over-the-counter fiber supplements like Metamucil. If you are having loose stools, then it is important to drink lots of fluids because loose stools can dehydrate you. If loose stools persist for more than 3 days or if you have fever or abdominal pain, then this can be a sign of an infection and you should call our clinic.
Pain
When you leave the hospital, you tend to increase your activity level a bit at home compared to what you were doing in the hospital. As a result, your pain can increase for the first couple of days at home. Some pain along your incision is normal, especially with activity (twisting, or getting out of bed or a chair). You should be able to transition off the narcotic pain pills and onto just Tylenol and/or ibuprofen within a few days of going home. You might still need the occasional narcotic. You can take over-the-counter Tylenol 1000mg every 6 hours, not to exceed 4000mg a day. You can take ibuprofen with food 800mg every 8 hours, not to exceed 2400mg a day. It is okay to take both of these. If pain is intense and not controlled by this combination of medicines, or is deep inside your abdomen, then this could be a sign of a more significant problem, like an infection – please call our clinic to discuss.
Mobility
It is important to try to regain your baseline level of mobility. Being out of bed helps prevent pressure ulcers, pneumonia and blood clots in your legs. Some people who use a wheelchair worry that they might damage their incision or cause a hernia by using their upper body to transfer in and out of bed or the wheelchair. In fact, don’t worry about this; we would much rather have you up and out of bed than limiting your mobility to protect the incision.
Blood Thinners
Some surgeries put people at an increased risk of blood clots in the deep veins of the legs (deep venous thrombosis, a.k.a. DVT). Depending on your level of risk we may or may not have sent you home from surgery on a blood thinner to prevent DVT. This may be an injection or a pill and usually is only used for one month after surgery, if at all.
Symptoms of a DVT can include calf swelling and pain, especially if it is in one leg but not the other. A DVT can travel to the lungs resulting in a pulmonary embolus (blood clot in the veins of the lungs). Symptoms of a pulmonary embolus can include shortness of breath and chest pain. A pulmonary embolus can be life-threatening. If you have symptoms of a DVT or pulmonary embolus, whether or not you are on blood thinners, please call us immediately.
Restrictions
You should not drive or drink alcoholic beverages while you are taking narcotic medications (see below). You should not soak in a tub or pool until the catheter is removed. Daily showering is important.
Wound Care
The skin of your surgical incision may have been closed with staples or stitches (sutures). Once you are at home, your incision can be left open to air. You can get it wet in the shower. Let the water and soap run over it but don’t scrub it. If you are overweight, the incision can get moist under a fold of fat; it is good to try to keep this area dry with baby powder and/or a gauze pad or paper towel.
If your incision was closed with sutures, then those will dissolve over a month or so. If it was closed with stitches, then there are usually some small pieces of tape (SteriStrips) over the wound as well, to help take tension off the stitches. It is okay to get the SteriStrips wet in the shower. The SteriStrips will fall off in about 2-3 weeks. If individual strips are halfway off, then you can pull those off the rest of the way.
If your incision was closed with staples, then those should be removed about 2 weeks after surgery. You can make arrangements with our clinic or your primary care provider to have those removed.
Some pain in the incision is normal. Pain plus redness that is bigger than an inch (2.5 cm) or pain plus wound drainage, may represent an infection. Please call our clinic if you have any of these symptoms.
Medications
1. Vicodin/Norco – this is a narcotic pain medication which you should only need for about a week after leaving the hospital.
2. You can resume all of your outpatient medications that you were taking before surgery.
3. Blood thinners -- see above
4. Stool softeners -- Immobility and narcotic pain medicines plus us operating on your intestines can cause constipation. This can become severe enough to result in major abdominal pain and a trip back to the hospital. So, we send you home with a stool softener. See above about "Bowel Movements".
Follow-up
Your follow-up appointment in Dr. Elliott’s clinic is generally 4 weeks after your surgery. This appointment may be with a Physician's Assistant, or with Dr. Elliott's fellow, rather than Dr. Elliott. They are part of his team and very experienced in the post-operative care of his patients. At this appointment we will inspect your wound and ask about your diet, level of activity and pain. If your stents were removed in the hospital then we get a kidney ultrasound one month after removal. This will usually be done at the time of this post-operative follow-up visit. The ultrasound is to check that after removing the stents, there is no blockage (and hence swelling) of the kidneys. If you still have your stents in then we will remove them at this visit and get an ultrasound one month later.
Contact Us
University of Minnesota:
1. Nursing phone helpline at the Urology clinic (8A-5P M-F): 612-625-6401
2. Meghan Howe is Dr. Elliott's nurse in the Urology clinic. Her direct line is: 612-713-9649
3. If after hours, call the clinic line at 612-625-6401 and you will be connected with the Urology resident on call. If that fails, then call 612-273-3000 and ask to speak with the Urology resident on call.