Urinary Diversion Q&As
Some practical questions & answers with Nancy, a bladder cancer survivor with an Ileal Conduit. Learn about the Neobladder and CCP or Indiana Pouch.
An ileal conduit is a system of urinary drainage which a surgeon creates using the small intestine after removing the bladder. To do this, the surgeon takes a short segment of the small intestine and places it at an opening he has made on the surface of the abdomen to create a mouth, or stoma. The ureters, which normally carry urine from the kidneys to the bladder, are then attached to the other end of the segment of intestine. The urine now travels from the kidneys, via the ureters and the newly formed ileal conduit, to the stoma and out into a collecting pouch known as an ostomy bag (or urostomy.) This is worn outside the body around the stoma 24 hours a day. Because the nerves and blood supply are preserved, the new conduit is able to propel the urine out of the body and into the urostomy.
Tell us about Recuperation after the Surgery
Nancy: One of the advantages of the ileal conduit is that it requires less surgical time than other, more complex, diversions. This procedure was developed during the 1940’s and is still the most used technique for urinary diversion. When I was released from the hospital, I came home with no tubes or catheters. I had no diet restrictions because only a small part of the intestine is used. However, I understand many doctors will recommend a low residue diet for the first few weeks post op. With conventional surgery, the recuperation period is about 6-8 weeks.
Are there Different Ostomy Appliances? How Do You Find the Right One?
Nancy: Ostomy pouches come in many different styles to meet the needs of different body types, skin conditions, and life styles. There are one piece systems where the wafer and bag are attached and two piece systems where the wafer is separate from the bag. The wafer is the part that sticks to the body. If you are prone to skin irritations, there are models to eliminate this problem. Finding the right system will take a little trial and error, but your ostomy nurse will work with you to find the system that works best for you. I asked several ostomy appliance manufacturers to send me samples so that I could try out the different models and styles before I chose which one to use long-term. Several manufacturers also have ostomy nurses available to talk to on the phone. While healing from surgery, or if you gain or lose a significant amount of weight, your appliance needs may change.
How do you sleep?
Nancy: I attach a night bag to my pouch and therefore can sleep all through the night. For me, this is a huge advantage as I had to get up so frequently before my surgery. Being tethered to a bag does take some adjustments but I can sleep on my sides and even my stomach. It is necessary to check the connections each night to make sure they are secure.
How often do you need to empty your pouch?
Nancy: Like all systems, the time depends on the amount of fluid intake. Drinking lots of water is important to keep the system flowing and to help avoid infections. My schedule is usually every 2 to 4 hours but if I am actively exercising, I don’t collect as much urine. When I am going out I always empty my bag prior to leaving and at frequent intervals.
What about leakage?
Nancy: Yes, bags can leak but once you find the right appliance for your needs, it doesn’t happen much. It is important to carry extra bags with you and even a change of clothes in your car. I have had this happen once in over a year but I was glad I was prepared and had brought a change of clothes. Occasionally there is a defect in the bag itself and a small leak will occur. I have had this problem once but know of others who have had it more often. Just be aware that it can happen. You may experience leakage problems in the first weeks after surgery. My problem was that my wafer overlapped my incision which had butterfly bandages (I did not have staples or stitches). Of course the system leaked because the wafer could not bond securely with the skin. The problem resolved as soon as the butterfly bandages fell out. I was told not to remove them myself so I had to be patient and wait! After a few weeks and some experience, leakage is not a frequent problem.
Nancy: The ostomy bag needs to be changed every 3 to 4 days. I change mine every 4 days. Once you get the routine down, it takes only about 5 minutes at most. When I am changing the bag, I use that opportunity to remove it before getting into the shower and let the water run over the stoma. On other days I shower with my bag on and then dry it with a towel, as the adhesive is water resistant. Some people use a hair dryer on low but I find that it dries quickly anyway. The night bag should be discarded after 30 days.
Nancy: There is risk of urinary tract infection with all diversions; I have had three in my first year. Symptoms are the same for all of us. Also with the Ileal Conduit, because it is made out of tissue from the intestine, you will always have some bacteria present in your urine. A doctor who is not familiar with urostomies may think that you have a urinary tract infection. It is important to give your doctor urine specimens that are directly from the stoma and not from the bag. I do this by collecting the urine in a specimen cup as it drips out of the stoma; this can take up to fifteen minutes. Before I start to do this I drink lots of water. I ask my doctor for specimen collection bottles so I can do this at home before I go to the medical office.
Is your life more or less normal?
Nancy: I can do everything I did before my surgery with the exception of heavy lifting. Hernias are a problem with all of the diversions and lifting heavy objects is a major cause of them. I am a very active person. I love hiking, camping, swimming, gardening, biking, and anything outdoors. I can still do all of these with no limitations. Body image was not a problem for me and I am just thankful to be cancer free. It has never bothered me but we all have different personalities and life styles. I like the easy maintenance and being able to empty my bag anywhere including the woods when I am hiking all day or a New York City taxi cab when I was caught in traffic for 2 hours (used a water bottle and no one knew). My husband and I love traveling to foreign countries and I have only a few supplies to take with me. I wear the same clothes I wore before my surgery. I was surprised that the tight fitting pants look fine.
How satisfied are you with it?
Nancy: The ileal conduit completely suits me and my lifestyle. I am very happy that it is my diversion.