The Board of the ABLCS has elected the late Mike McGarry as Board Member Emeritus. His example to us all in survivorship and bladder cancer advocacy was deemed by our board to be the standard our organization should always strive to exemplify. By electing him to this perpetual position on our board we hope to never forget the path he has paved for us.
I am currently undergoing chemo for stage 4 bladder cancer and will have surgery around late April. I am wondering about my options- neobladder (least likely for me), external bag or catheter. I have Doctors advice of course (Memorial Sloan Kettering), but wondering about actual experience of those who have it. Is the external bag a major factor in quality of life. How difficult is the catheter to use given a fairly active life? Are ther problems, such as nitetime incontinence? Any other advice?
I am a 58 year old active male. Enjoy swimming, carpentry, yardwork, etc. so quality of life is important to me.
I truly believe that you will be able to adjust and make whatever diversion you decide upon work for you. However, you are very wise to learn as much as you can about all three diversion types so that you are more confident with your choice. First, I will tell you a little bit about my choice and discuss all the diversions.
I had my surgery at Indiana University Hospital in Indianapolis. My surgeon was instrumental in helping me choose a neobladder as my urinary diversion. I had been leaning toward an ileal conduit because my first urologist had told me that was my only choice...turns out it was the only type he was qualified to
construct. My IU urosurgeon, Dr. Michael Koch, told me, "Right now you just want the cancer to be gone. You do not care if that means an external bag or internal pouch or whatever, as long as the caner is gone. But in a few years of being cancer free, you will wish tht you had your life back to normal in all respects. The best back to normal I can offer you is the neobladder." After being told that, my primary care physician told me that his patients with internal continent pouches/stomas were happier with their diversions than his patients with ileal conduits...he had no patients with neobladders.
At the time of my surgery, I knew very little about urinary diversions, but I have since thoroughly educated myself about diversions and bladder cancer. I am pleased with my choice of a neobladder as my diversion, but I feel I would have been able to adjust to any of the three. My second choice would be the continent internal catherizable pouch often referred to as the Indiana pouch. Here is my summation of the three diversions:
Although the ileal conduit has been around the longest, it does not mean that it is the best or without possible complications. The continent diversions were developed because of the need for improvements in urinary diversions. At the present, the medical profession is listing order of preference for urinary diversion as first neobladder, next continent cutaneous pouch/stoma, and last ileal conduit. However, all these diversion are represented on the blcwebcafe e-mail discussion list, and their owners are leading active, well-adjusted lives.
The general names and definitions for the three types of diversions are:
1) ileal conduit - A segment of ileum (small intestine) is used as a pipeline (conduit) to divert urine. The urine flows from the kidneys, down the ureters, through the conduit and out the stoma. The conduit is
not a reservoir for urine, meaning the urine flows continually and an external pouch must be worn to hold the urine. The output from the stoma is urine and mucus. It is sometimes referred to as an ileal loop.
2)continent cutaneous urinary reservior - An internal pouch that is made from a segment of intestine and is connected to the skin by fashioning a piece of intestine to form a tunnel between the pouch and a small opening in the skin. The opening is a nipple stoma that is made of intestine and bought to the skin, being fashioned in such a way as to allow the reservoir to remain continent. This diversion must be
catherized periodically, approx. every 4 hours, in order to void the urine. There are several different designs, but this diversion is often referred to as an Indiana pouch.
3)orthotopic neobladder - An internal pouch is made of intestine and placed in the body where the original bladder was located. The pouch is connected to the urethra to allow voiding of urine through the urethra. Voiding is accomplished by relaxing the pelvic muscles and bearing down with the abdominal muscles. It is the only urinary diversion that holds the possibility of having sterile urine post-surgery which is definitely a plus. The intestinal segment most often used for neobladders is from the ileum, it is sometimes referred to as an ileal neobladder.
The different designs for urinary diversions are often named for the person who designed it(Studer, Hautmann, Koch), place where first used (Miami, Indiana, Padovana), or the configuration of the design(Wpouch, Tpouch, Spiral, etc).
Although some people use the name neobladder to refer to any of the diversions because it means new bladder, the medical professionionals that works directly with diversions reserve the word neobladder to refer to a urinary reservoir made of intestine that is orthotopically placed in the body and connected to the urethra. Therefore, neobladder is a term used synonymously with an orthotopic urinary diversion.
The intestinal segments used for continent cutaneous reservoirs and orthotopic neobladders can be small(ileum), large(colon), or a combination of both. I have not researched if losing the one-way valve between the ileum and colon to make the continent mechanism for the Indiana pouch creates any subsequent bowel difficulties, but I would do so if I were considering it as an option. However, I do not remember any of our Indiana pouch people on the blcwebcafe e-mail discussion list complaining of intestinal problems post-surgery.
Neobladder, catherizable internal pouch, and external pouch people do all the activities you mentioned...swimming, carpentry, yardwork. All three take some extra care with neobladders that are working properly taking the least amount of additional effort. The catherizable internal pouch(Indiana pouch) probably has the fastest/easiest "learning curve." Although the Indiana pouch and the neobladder have to be stretched to hold 400-500cc of urine so that you can go around 4 hours before needing to void, learning to catherize it is probably easier than learning to control a neobladder. With the external pouch, it often takes some trial and error learning which appliances work best for you and learning to attach them. Although you would soon have all that under control, it is probably not as easy as the internal pouch would be. The external bag does have the advantage of being able to connect it to a night drainage bag so that you can sleep through the night. With the other two diversions, you will need to get up once during the night to cath the internal pouch or just void the neobladder. It can take a while to regain continence with the neobladder, especially at night.
I hope that some of this information has been of help to you. Please continue asking any and all questions that you have. Now, here are a few questions for you. What chemo combo are you currently having, and how are you doing with it? And, which diversion is your doctor at MSKCC advising for you?
I am sending you my best wishes for successful treatments, surgery, and recovery.
thanks Linda, very helpful summary, right in line with what i've already learned.
Currently have 2 chemo treatments left after today (getting treatment as I write). Sisplatin, Gemcytobean and Pacitaxol. (did not check spelling) Tolerating fairly well, with worst symptom being fatigue.
Surgeon is saying that since cancer has spread to top of uretha, I am probably not a candidate for the full neobladder. So either the external bag (my less desireable) or continent pouch with stoma (leaning toward this) are my choices.
I currently have a neprostomy from my right kidney to a leg bag (or overnight) since cancer is blocking right ureter, so I somewhat familiar with that device- and would prefer something "better."
What concerns me is the presence of the stoma- which seems to me to an ongoing source of infection. It seems infection is a very common source of ongoing problems, occuring in 100% of the people I've connected with so far- though admittedly a small sampling. I spent a week in Hospital myself due to infection. So I guess my main question is how successful - with minimal complications, is this procedure? I'm looking mostly for anecdotal reports from people who have this diversion. Also any other insights - I've read some contradictory stuff about catheter tubs needing so be sterile/single use, etc.