In response to your questions about the Indiana Pouch, I had this surgery 3 years ago in July for Bladder Cancer. I have never had a kidney infection, the pouch has worked awesomely for me. I catheterize it every 4 hours and that process takes about 3 minutes. I sleep 8 hours at night as the kidneys rest and the pouch does not fill up as quickly. The only issue I had was some stone formation in the pouch . The stones were removed in a day surgery situation, only took about 10 minutes each time and I had this done twice. The situation seems to have resolved itself. I received alot of help from a website called the continent connection. They had alot of information and pamplets on Indiana Pouches. I dont know if this is still on the web. I would be happy to answer any questions you might have. The stoma that I have is smaller than my baby fingernail and is flat on the right side of my stomach. I keep a bandaid on it. I do leak sometimes if I drink to much coffee as the pouch is made of bowel and is stimulated by caffeine etc. but I just drink water to keep the urine more dilute.
My surgeon had only done this surgery twice so I was #3 but it has worked out perfectly for me.
Thanks to all for the detailed information. I have decided to go with our university hospital, based on suggestions given--overall experience in this type of surgery, resources to help with after care, oncology/cancer department. I go in next week and am optimistic about the outcome. I appreciate the information and the community of support you have generously provided.
I couldn't agree more. I checked into USC Norris three months ago today for my RC (I'm 49, T3a, N+, M-) by Dr. John Stein, and he removed *85* lymph nodes. That's above and beyond the call of duty. I now have a T-pouch neobladder, but I can't say for certain that the T-pouch procedure is performed elsewhere.
As far as the "local experts," my personal urologist was kind enough to say, "I do two or three of these a year--at USC they do three or four a week. If I were you, that's where I'd go." At first I wasn't happy with this recommendation, since I had already mentally prepared for two weeks in our local hospital, close to home and family and friends. How do I feel now? After I get off the computer, I'm going to write my urologist a thank-you note for his honesty and for his referral to Dr. Stein.
As far as satisfaction with the neobladder, like many have related here, I was absolutely and totally incontinent for a time. Two-and-a-half months, to be precise. I despaired of ever becoming one of the vast majority of patients that regain continence. Then, about two weeks ago, things began to get much better. Within the last three days I'm almost back to normal--in fact, I hereby resolve to stop answering "Depends" when someone asks me how I'm doing.
You've got a tough row to hoe coming up, but having the right surgeon and hospital will make your life much easier.
You are wise to be checking on the newer urinary diversion designs because they were developed due to the need for improvement in the ileal conduit option. My first urologist indicated that the ileal conduit was the only diversion I should have, but I soon discovered that it happened to be the only diversion he was capable of constructing. Second opiinions are very valuable. Here is a website from the well respected Cleveland Clinic that discusses the pros and cons of each of the three diversion types: www.clevelandclinic.org/health/health-info/docs/3900/3927.asp?index=12546&src=news
Unlike as you stated in your post, my research does not show the catherizable pouches as having less kidney reflux than neobladders, and I consider them about on par in that regard. Actually, since the neobladder is the only diversion type that has the potential of providing sterile urine, it could be considered as having the best chance of protection of the upper tract and avoidance of infection. However, both are much superior to the ileal conduit in that regard.
It is extremely important that you have a talented surgeon that has considerable experience in radical cystecomy/urinary diversion surgery....I cannot stress this enough no matter your choice of diversions. As far as a list of experts for catherizable reservoirs go, I think that most of the doctors that perform neobladders would also be proficient at the internal catherizable reservoirs and most likely have a design preference such as the Indiana or the Koch. I think it is well advised to use the design your particular surgeon likes the best. If you have a design preference, then I would recommend choosing a surgeon that prefers that design. It would be interesting to ask why the doctor prefers his choice of designs over the others.
It does seem that the term Indiana pouch has become almost synonymous with the internal catherizable pouch, and it seems that it is often the preferred design, at least in the United States. I think the main difference in the two is the intestinal segment that is used to construct them. The Koch pouch uses small intestine(ileum...I do not know if this includes the ileocecal valve or not), and the Indiana uses colon for the pouch with the ileocecal valve as the continent mechanism, The ileocecal valve is the one-way mechanism between the small intestine and colon that prevents reflux from the colon back into the small intestine. Using this valve has always concerned me, but I have not read of major intenstinal problems due to this. In fact, most of the Indiana pouchers on our e-mail discussion list have not indicated that this has created any intestinal problems for them. The colon and ileum also differ in the amount of mucus produced with the colon generally producing more. However, the amount of mucus production can vary with each individual. It should be noted that periodic flushing of mucus from an internal continent reservoir is usually necessary while in a properly functioning neobladder irrigation to remove mucus is unnecessary because it slips right out when bearing down to void. Although most doctors want their patients to catherize to check for residual urine and to irrigate the neobladder during the first week or so after Foley catheter removal, it is not a lifetime need to do so as it is with the internal continent reservoir, and in fact, doing so would be counter to the intent of having a neobladder.
I must admit that from my research I do have a personal list of favorite centers/urosurgeons, and I think there are good centers/doctors in all areas of the United States. Knowing where you are located would help with recommendations. For example, I like the fact that USC Norris in Los Angeles is doing extensive lymph node removal when they do radical cystectomies(60+ compared with 14-20 at most cancer centers) because I think it correlates with USC's higher long-term survival rates. Also, I like the fact that Vanderbilt in Nashville has perfected the surgery to reduce the time in the operating room and that their patients seldom need blood transfusions. The length of time for neobladder surgery is ususally stated as 7-9 hours, and Vanderbilt surgeons often accomplish this in 3 1/2 to 4 1/2 hours. My surgeon is head of the urology department Indiana University Med Center in Indianapolis and previously practiced at Vanderbilt. My surgery was about 4 hours and he said it took longer than he had expected because of waiting for the results of the frozen sections from the path lab. I did not require a blood transfusion. There are also several designs for neobladders with most urosurgeons having a favorite that they use. My surgeon uses a design that he learned while on a fellowship in Italy, and it is not used by many surgeons in the United States. It is called a spiral neobladder and has the advantage of easy access to the ureters should it ever be necessary to check the upper tract. The names of the different designs often are based on the name of the person that designed it, the place where it was designed, or the configuration of the intestine to make the pouch.
Also, it would help to know if you are male or female. Having a surgeon that has had good success with nerve sparing would be very important if you are a male and a good candidate for nerve sparing surgery. If you are a female and the location of your tumor makes it oncologically safe to spare the anterior vagina, then you would want a surgeon willing to do this which more and more surgeons are learning it is safe to do. Also, if you know the stage and grade of your cancer, it would be helpful if you would share that with us.
You are also wise to be concerned with information about living with the different diversion types. I am not aware of any book, brochure, or website that goes into detail about the day to day life after having a radical cystectomy/urinary diversion whatever the type. The few "living with" articles I have found in the past were were inadequate at best. There are many that discuss the surgery and immediate aftercare. However, even the information these sites offer is limited. For some good information, you could join our e-mail discussion group and ask specific questions, but be warned, it is a very active List and generates lots of mail. My urosurgeon told me that at the moment my greatest concern was getting the cancer out of my body, but after things settled down, I would want my life back to normal. He said, "The closest to normal that I can give you is the neobladder." I have been happy with my choice of a neobladder and my life is so close to normal that normal is how I would describe it. But, I do condisider the internal continent pouch a good option and probably easier to adjust to in the short-term. But, the need to catherize every four hours or so does make it not as close to normal as a properly functioning neobladder.
Some centers are superior to others when it comes to patient education and care after the surgery. The best case would be to have an excellent surgeon at a center that provides excellent patient education. This can be hard to find because experiences with living with a urinary diversion is a very individual matter and doctors/nurses cannot have a list of exactly how things will be. The best advice my doctor gave me was to remember that the information he was giving me were guidelines not absolute rules and that I should use good common sense when applying these quidelines.
Although you should take the time to thoroughly study your choices, research shows that if you have muscle invasive bladder cancer and are not having chemo prior to surgery then the best outcome is achieved if the sugery takes place within 90 days of diagnosis. From what I have read and just my personal opinion, I would not want to wait longer that 45-60 days. Please keep us posted on your decisions and how you are doing.
Hope this helps,
I don't know of a listing of experts, but you could try going to the best cancer centers nearest you and checking into their staff, most have websites with descriptions. If you mention your area perhaps others reading could give you a recommendation.
I think you're right to pursue the choice you feel is best. Considering your age it's not quite fair of the uro to steer you to the simplest procedure. Whether it's the external pouch/ileal conduit, neobladder or Indiana pouch/internal self-catethetised reservoir, each approach has their own set of complications, with none standing out about the other, all acceptable. Studies have shown that folks learn to adapt and are basically satisfied with the quality of life no matter which procedure is done.
I wish you the best with finding the right doctor.
I will soon be having my bladder removed and my urologist is recommending an Ileal Conduit. He feels there are fewer surgical problems with this approach. He also has expressed concerns over possible post-surgical problems with the neo bladder.
My urologist has mainly worked with people in their 60s and 70s. I'm in my mid 50s, plan to work for several years and would prefer a less intrusive type of system. Having researched information here and elsewhere on the Neobladder and Indiana or Koch Pouch/Reservoir system, I'm leaning toward one of the Pouch/Reservoir options. They seem to offer advantages over the other systems in terms of leakage, have less chance of kidney reflux than the neobladder and have superior convenience compared to the Ileal
My questions are these:
1. Is there a listing of doctors or places that are experienced in the Pouch surgical procedures? My preliminary investigation suggests that doctors in my area are more experienced in Ileal and Neobladder
2. What are the major differences between the Indiana and Koch pouches? Is one approach superior to the other?
3. If I can't find a local/area physician who is experienced in pouch surgery, would I best be advised to:
a. bite the bullet and have surgery done at a distant location with an experienced pouch surgeon?
b. consider finding a local neobladder expert who has/could do the pouch surgery?
c. Go with the option that has local experts (Ileal or Neo)?
4. Would any Indiana/Koch pouch users out there be willing to comment on their experience with the system? Are you glad you seleced the pouch over the Ileal Conduit?
5. What is the best book/brochure/website description of what it is like on a day to day basis to be a user of each of these systems? I'm just starting the journey and could use any direction you can provide.