Selecting Your Best Urinary Diversion-for Women

July 31, 2023

Dr. Armine Smith

Year: 2023

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Selecting Your Best Urinary Diversion from a Medical Perspective

Video (30 min) | Transcript (PDF)

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The Patient Perspective on the Different Urinary Diversions

Video (32 min) | Transcript (PDF)

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Question and Answer about Urinary Diversions for Women

Video (12 min) | Transcript (PDF)

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Full Transcript of Choosing a Urinary Diversion- for Women

Stephanie Chisolm:

Hello and welcome to Selecting Your Best Urinary Diversion. My name is Stephanie Chisolm. This program is for women, and I am the Director of Education and Advocacy at BCAN.

we are really delighted today to really talk about the various types of urinary diversions that are available to you as patients when that radical cystectomy is your treatment option. That would include an ileal conduit, a neobladder, and an Indiana pouch. And we’re really thrilled that Dr. Armine Smith from the Kimmel Cancer Center and Sibley Memorial Hospital, and she’s also from Johns Hopkins Hospital, is here.

Dr. Smith’s research interests and her clinical interests focus on women in bladder cancer. And as a urologist, Dr. Smith has performed many radical cystectomies and she’s here to tell us how she and her patients together determine the best urinary diversions.

A spoiler alert, there’s no best urinary diversion, although probably each of our speakers, our patient speakers might tell you that theirs is the best, it really is an individual decision. We’re also really delighted to welcome three patient advocates from our Survivor to Survivor program who are going to discuss their radical cystectomy decisions and their life after their bladder removal. So Karen, it’s nice to have you and Anita and Mary, thank you so much for giving us your time. Before we begin, I would like to share a short animation. It’ll kind of set the stage for everything that Dr. Smith is going to share with you.

Video Audio:

Cystectomy is a surgery that involves the removal of the bladder. The most common type of cystectomy is known as a radical cystectomy where the bladder and nearby tissues and/or organs are removed. After the bladder is removed, the surgeon also needs to create a new way for urine to be stored and leave the body. This is known as a urinary diversion.

A common type of urinary diversion is called an ileal conduit. This is when the surgeon creates a new tube from a piece of intestine that allows urine to pass through and out of the body via a small surgically created opening on the stomach known as a stoma. The urine then drains into a small pouch that fits over the stoma and attaches to the skin with an adhesive.

Another common type of urinary diversion is called a neobladder. This is when a new bladder is made, usually constructed out of a piece of intestine and attached to the urethra. In some cases, a continuous cutaneous pouch, CCP or Indiana pouch, is created using the small and large intestines to create an internal system of urinary storage. This pouch or reservoir is connected to the skin by a stoma, a small surgically created opening on the stomach, and is periodically drained via a thin tube or catheter. Learn more at BCAN.org.

To watch the video use this link: https://youtu.be/S2QKwhW8pds

Stephanie Chisolm:

Okay. So, Dr. Smith, I’m going to turn off my video and let you chat and share your screen.

Dr. Armine Smith:

Thank you, everybody. Thank you, friends, for joining me today to discuss this topic. So we’re going to talk about the urinary diversions as Stephanie kind of set the stage for us earlier and talk a little bit about the decision-making and why we decide to proceed with one diversion versus the other.

So my name is Armine Smith. I work at Radiological Institute of Johns Hopkins University. I’m a director of Urologic Oncology Sibley Memorial Hospital here in DC, and I also co-direct the Women’s Bladder Cancer Program as part of the Greenberg Bladder Cancer Institute.

Dr. Armine Smith:

So to talk a little bit about the anatomy, which we’ve touched on a little bit briefly, we’ll talk a little bit about diversion types just because it’s not intuitive to understand what happens when these types of diversions are made. Then we’ll move on to talk about how we make a choice about these.

So the anatomy of the abdomen and the peritoneum and retroperitoneum, and the reason I’m bringing it up is because we use a lot of these bowels and I think we use some portion of the bowel for a certain diversion and a different portion for a different diversion. So I think it’s important to see it.

If we look at the initial layer of the abdomen as we enter, there are bowels and the bowels are not in the frozen state. They kind of move around and they fill around. I say that, because patients ask me, they’re like, “If you take something out, what happens? Is it like a void?” No, things move around and kind of rearrange themselves in the abdomen, and usually it’s the bowel.

So you have the digestive tract that spans from the stomach through the duodenum and then through the small intestines, and they continue until they insert into the colon. The colon has also distinct anatomical area. So the right colon is also called the descending colon. There is the middle part or transverse colon, and then there is the descending or the left colon that then joins the rectum.

So if you peel off that first layer, we end up with the retroperitoneum, which is also an important part for us as a urologist, because it contains the kidneys. It contains the ureters that carry the urine from the kidneys all the way down to the bladder, which sits in the pelvis. These are just some large vessels that span the whole retroperitoneum that carry blood in our body. Behind the bladder in women sits the uterus and the cervix and vagina. Then at the very back of the retroperitoneum is the rectum, which is shown schematically here.

There are few ways to do a cystectomy. The traditional way is also called anterior exteneration, because what we do is remove kind all the organs in the anterior or the front part of the pelvis. So traditionally we removed bladder and the urethra, the uterus and cervix, ovaries and fallopian tubes. We would remove the anterior vaginal wall, pelvic lymph nodes, and that was the removal of the bladder pretty much for bladder cancer in women.

Nowadays, this kind of ancient view has started to dissipate a little bit. So we have better ways of managing women, and we have come with something called organ sparing cystectomy. For that, usually we remove the bladder and pelvic lymph nodes and the rest of the organs can be left in place in the proper scenario.

So moving on to urinary diversion types. Then the video had a nice little overview, so I’ll try to match it with my more ancient slides. So we have the incontinent diversion or the stoma, or it’s called ileal conduit. There is also the continent diversions, number two and three. So the orthotopic neobladder or most commonly performed diversion type, it’s called Studer, orthotopic neobladder. Then there is the cutaneous continent pouch. The most common type that I’ve seen perform that’s called Indiana Pouch.

For the ileal conduit you see we remove the bladder, we remove kind of the bottom part of the ureters, and then we take a small portion of the small bowel at about 12 centimeters in size to 15 centimeters, and the ureter is plugging into the back portion of that conduit of that small segment. The front portion gets joined to the abdominal wall, and that is part that’s called conduit or ileostomy. The pouch then goes on the top of it, it collects the urine and the urine drips kind of in real time as it’s produced.

Dr. Amine Smith:

The orthotopic neobladder or the Studer orthotopic neobladder is constructed using about 55 to 65 centimeters of the small bowel, that is this bowel in the middle of the abdominal wall. We take this tube, we make the incision in the wall of the tube and convert the tubular structure into a spherical structure. So the back wall kind of gets joined together and the front wall gets folded on itself and we end up with this sphere that doesn’t quite look so pretty, but that’s the schematic of it. We have a little part that’s called “chimney” that’s sticking out from the top. And the ureters get plugged into this chimney and the most dependent portion of it gets joined with the urethra and that’s where the urine would come out as the person urinates.

For the Indiana catheterizable pouch, what is used is usual the right colon or the ascending colon. So you take the whole length of the ascending colon, a portion of the transfers colon, and a little bit of a portion of the small bowel that’s attached to it, it’s called terminal ileum. Again, you detubularize it. So you make an incision in this tubular structure, put it together as a pouch in the back and then fold it over in the front, and it ends up being a kind of spherical looking shape, structure. The ureters get plugged in into the back wall of the pouch, and then we have this little part of the ileum or terminal ileum that becomes the stoma.

So if you look at this kind of cartoon presentation on the right, you see these kidneys are plugged in the back of the pouch. The pouch kind of fills up with urine. This is the stoma that is a very kind of a small diameter tube that gets plugged into the abdominal wall or the belly button area. One would pass a catheter through to drain the urine in place. So for this catheterizable pouch, we use the body’s natural continence mechanism or the terminal ileum. And that actually is a mechanism that prevents the urine from spilling over as it fills up the pouch. That is our mechanism.

So the way we come up with the answer of who gets what, is based on multiple different factors. So we have patient factors, we have the cancer itself, and then the provider factors.

Dr. Amine Smith:

So patient factors are multiple. We have to consider the anatomy, the function of the patient, and then also the psychosocial circumstances. So let’s say for anatomy, we want to make sure the urethra, which is going to be the outlet for the neobladder, does not have scarring. So it doesn’t have excessive resistance and it has competence to pull the urine in place, because we don’t want you to have a neobladder and leak like a seed from it.

For other factor of anatomy, people who have radiation to the pelvis in the past for other reasons like cervical cancer or colon cancer and some things like that, and the structure in the pelvis form more scarring and they have less blood supply, so they’re more prone to inadequate healing and things like that. So this ends up being a not absolute contraindication, but soft contraindication to certain kinds of diversions that we may offer.

As far as the function, the kidney function is very important, liver function as well. So there are some cutoffs at which we know the kidneys and the liver cannot handle the solutes. And the reason it makes a difference is because the bladder wall is very different than a bowel wall. So the permeability of the salt and the solutes in the urine through the bladder wall is very different than what would happen if you use a bowel as the bladder. So when you have a pouch that holds the urine in place and a lot of the solutes come out, the kidney should be able to filter them out and get it out of your body. And if the kidney function is already impaired in some people for a variety of reasons, including neoadjuvant chemotherapy or other, like diabetes and blood pressure, we know the kidneys can’t cope with all this overload of solutes and then people start running into trouble.

Some things that we’ll look at is the comorbidities, meaning what kind of medical issues does the patient have? So if the patient has a lot of cardiac issues and we’re trying to get them quickly into the surgery and out of the surgery, adding additional two hours or hour and a half to construct a very complex bladder does not make a lot of sense, because then we’re not helping this patient, we’re putting more risk into the surgery. Other things and other scenarios can arise, but this kind of the one that comes to mind the most frequently when we make this decision.

Dr. Amine Smith:

Then the psychosocial circumstances usually, I mean the ability to care for the diversion and to talk about some examples. So some of these diversions have catheters that need to be inserted, the catheters and the pouch that needs to be flushed. Some diversions require more stoma maintenance than others. You have to set voiding intervals, because the bladder is done and the nerves that supply the bladder are disrupted. So the body does not have the ability to have this automatic feedback that tells you, “My bladder’s full, I need to go empty it.” We certainly don’t want to overstretch the new bladders and cause them to not function properly. So most of the people have to set alarm at three hours or three and a half hours, four hours and wake up once or twice at night to empty this, at least continent diversions.

There’s maybe need for intermittent catheterization, and for some people it’s really kind of a no-no. So the word catheter sends them far away from the picking of that urinary diversion. Then the access to supplies and medical care. There are some people who travel for work, they may travel for leisure, they want to not be bound by needing to carry large amounts of catheters or pouches to exchange the adhesives and things like that. So all these kind of things also come into play when we have this conversation.

Now, the cancer factors, so our first goal is to rid you of cancer. So if we’re going to do something that’s going to compromise that, that’s not in the best interest of the patient. So there’s some things that we’ll look at when we decide if it’s safe to leave the urethra in place and put together a neobladder with it.

So if you have a cancer that’s at the bladder outlet that joins the urethra or the urethra itself, leaving that portion of the urinary tract in place, risks leaving cancer in place. So for these patients, usually neobladder is too risky. We would not offer that. If you have a history or a predisposition to colon cancer, we unfortunately cannot utilize the colon. So Indiana pouch is out of the question for that. So those are just some things to keep in mind.

The provider factors and the system factors are usually also multiple. There’s the surgeon’s experience. Not every person who does radical cystectomies is familiar and has the training and experience to offer all three. You definitely don’t want to push your surgeon to do something that he or she is not comfortable with. With these kinds of diversions you have to have an experienced team, you have to have nursing that’s able to help you along. You have to have a stoma nursing, you have to have somebody who’s going to answer the phone when you have some issue with this continent diversion or the pouch or the conduit.

Then there are hospital resources. This is a difficult surgery, complicated surgery. Patients are usually not the healthiest, because they’re older and have other medical issues, sometimes smokers and sometimes not. So the hospital itself matters where you can get tertiary care is needed, where you can get ICU care is needed to have this radical cystectomy. The reason I’m belaboring this point, is because cystectomy is a highly morbid surgery, meaning it’s fraught with potential complications that can happen during surgery and after surgery. So from analyzing all of our experience from different institutions in literature, we know that about two thirds of the patients who undergo radical cystectomy will have at least one complication in a postoperative period, and that’s usually about three months.

Most of the complications are fortunately mild, but about 13% experience a high grade complication.

The reason, again, to talk about this a little bit more as we’re selecting the urinary diversion, is because there’s a lot of stuff that’s going on. You have to have a surgery that’s a fairly difficult surgery already. There are immediate postoperative issues that patients can be dealing with. Do we want to make things more complicated or less complicated for the patient? These are the things that come to mind.

Dr. Armine Smith:

So usually when patients leave the operating room, they come out with multiple catheters and drains. There are more catheters and drains a lot of the times with the continent diversions, just because the anatomy is more complicated. Patients deal with the stomas and surgical wounds. It’s tricky to maintain a good fluid balance. People deal with the anemia, which is inadequate amount of red cells, whether it’s due to cancer, to chemo, to blood loss during surgery. People deal with pain while recovering from surgery. The bowel function and motility are an issue as you probably hear one of, or at least one of our patient advocates who will share their experience. Patients are more immobile after surgery, their risks of blood clots. So the patients are already dealing with a lot of things.

Some of the complications that go hand in hand with the radical cystectomy and some are more inherent to certain urinary diversions and some are just all across, because of the removal of the bladder. So people deal with the short-term complications, which are electrolyte disturbances, it’s about 50% of people will deal with it right away, right after surgery. Some people will have delayed bowel function return. Some people may deal with the urine leak. Some people may deal with bowel obstruction, bowel leak, official formation. Fortunately, a lot of these are small. The percentage of people who will have issues with this are small, but a lot of things are getting detached from each other and reattached to each other, and that can cause problems.

Now, long term I think becomes a little bit more important when you select a certain kind of urinary diversion, because we know, so let’s say for Indiana pouch, the rates of stomal stenosis can be up to 10-24%. That’s because it’s a small channel that gets used multiple times a day and can devolve scarring. If you’re willing to take that chance and that’s great, but it’s just something to keep in back of mind.

Stephanie Chisolm:

Dr. Smith, can you just explain what stomal stenosis is for those who don’t know?

Dr. Armine Smith:

Sure. So like I said, it’s most pertinent to people who have the catheterizable pouch and they have that very small stoma that’s flush and comes out to the skin, whether the belly button or the kind of right side of the abdominal wall. That’s where the catheter is passed through multiple times a day to drain the urine. The scarring can build up at the outlet of the stomal joint, juncture, to the skin or a little bit even down closer to the pouch. What that would do is, that would just make the catheterization difficult. Fortunately the revision of the stoma is a fairly straightforward surgery. So you can do some nip and tuck and make the skin a little bit bigger to pass the catheter, but it’s something that’s known to happen in people who have these stomas and it’s really just a overuse injury to the stoma.

Stephanie Chisolm:

Thank you.

Dr. Armine Smith:

The UTI and pyelonephritis, I mean, these are fairly common things. For some people, they just can’t get rid of these UTIs. And we know that people with the Indiana pouches and orthotopic neobladders, initially, in the first three months, have more rates of infections than the conduits. However, the conduits over kind of the lifetime of the individual, will have higher chance of infection and it’s very much individual dependent. Some people just have the ability to colonize the urine and get sick from it over and over, and some people just never see a single UTI in their lifetime. So that’s just something that kind of also I get asked a lot when people come to me and it’s something that just needs to be dealt with promptly, because when you don’t have a bladder and you have the infection, it very quickly turns from a very simple infection to a full-blown kidney infection, land you in the hospital with sepsis and a very complex hospitalization.

Stone formation. So because there are issues with the fluid balance and people sometimes struggle to maintain good hydration with these urinary diversions in place, there is an incidence of renal stones and about 5-7%, not overwhelming amount. Also, people who have Indiana pouch sometimes will form mucus in the urine and the mucus is also very individual dependent, some people form less, some people form more. There’s some dietary intake that can prompt you to make more mucus such as dairy products. And if this mucus is not flushed out properly, it can turn into pouch stones, then those need to be handled over time if that happens.

So urinary obstruction or urinal obstruction, renal deterioration and acidosis are not quite as dependent on the type of the urinary diversion, but they can happen in all three of these diversions. Acidosis or the metabolic derangement can happen more in the continent diversions. And again, it depends on the type of the bowel, and I’ll talk about it a little bit more on the following slide. For people who pick a ileal conduit, there’s about 2-7% incidents of parastomal hernia that can kind of cause obstruction or disfigurement and can be dealt with in multiple ways as well. So the conduit is not completely straightforward diversion that can carry you through your life either.

Dr. Armine Smith:

Now the metabolic derangements or the electrolyte derangements can happen short term and long term. So short term there can be increased acid in blood. So hyperchloremic acidosis it’s called. We can have low potassium and low magnesium. Also, certain kinds of diversions can affect the drug absorption. So some that come to mind is methotrexate, they’re absorbed differently and you’d have to modify the medication intake when you have a different kind of diversion. Then long-term metabolic derangements, there are sometimes kind of preselected based on these short term disturbances that happen, people can get dehydrated.

The acidosis that is happening long-term can cause osteoporosis. Using the longer segments of the bowel can predispose you to malabsorption of bowel salts and vitamins, special B12 deficiency. Nowadays, we have a little bit of a different technique, so we’ll leave a little bit longer channel at the terminal ileum if possible and that circumvents some of these malabsorption issues, but they’re still there. If you have Indiana pouch, you have to have B12 checked every year for the rest of your life. Again, the drug absorption can be an issue in long term as well. So these metabolic derangements depend on the length and segment of the bowel that is used. Then it can be worse with continent diversions and it can be certainly worse with renal insufficiency and liver insufficiency as well.

So looking at the quality of life after diversion, especially in women, not certainly only happening in women, but these are a lot of things that I’ve heard from my women patients. There are some people who have issues with the body image, with the ileal conduits, and people just don’t like the idea of having the urine present. They think there’s a smell that’s associated with that and they worry about the risk of leakage from the ileal conduit, which can happen if the stoma appliance comes loose throughout the day. That is just kind of the issue with that. These patients are usually the ones that kind of stay away from the ileal conduit and want to have something more that’s hidden inside of the body, so a continent diversion of some sort.

For the neobladder, the usual kind of things that we see are urinary incontinence or urinary retention. So in women, these numbers are reported as about 36% of patients experience incontinence during daytime. And about 42% of patients will experience incontinence at night. Then the urinary retention with the neobladder up to a third of the patients can, throughout their lifetime, go from having a perfectly functioning neobladder to a neobladder that doesn’t drain on its own. Sometimes we don’t know the answer of why that happens, whether it’s the kinking of the pouch, whether it’s the nerves that are supplying the area that needs to be drained, it still remains to be seen.

The good news is, these numbers are improved with these newer organ and nerve sparing techniques, but there’s still something that I always bring up to the patients when they think about the neobladder, because you don’t want to leave them with the surprises after surgery. For Indiana pouch, again, the things that can be bothersome to some patients are the complete dependence on supplies. So you can’t travel anywhere without a catheter and most of the people need some sort of a irrigation solution to irrigate their pouch to get rid the mucus and things of that nature.

Dr. Armine Smith:

Which diversion is superior for a patient? We’ve had a lot of studies look at this, a lot of questionnaires sent out to the patients and the answer is, none of them are superior. It’s a personal choice. What we know is that once the patient is counseled appropriately, told about all the potential risks and all the potential issues that can go hand in hand with the diversion that they choose, if they choose it, they’re usually happy with it. I have not really had anybody who came to me and said, “I really want to change what I have to something else,” which sometimes we can do that. So if there’s a person that’s say very unhappy with a neobladder or develops some sort of issue with a neobladder over their lifetime, it can be converted into a ileal conduit. And Indiana pouch can also be converted to a conduit. Usually you can’t convert catheterizable pouch to neobladder, just because the anatomy doesn’t work. Then you already have a large amount of bowel that’s missing from one diversion and you just can’t keep chopping away at the GI tract and have a functioning GI tract.

So the takeaway point is, if you do your research, have a very frank conversation. The other thing I do with my patients, I always tell them to talk to other patients who have a certain kind of a diversion that they’re interested in, just to understand what it’s like to live with these diversions. I tell them usually, “You don’t even have to tell me now what you want. Just wait and do all your research, talk to people, check out the BCAN website. And about a week before or a few days before the surgery, we can decide what to do for you, because this is ultimately the change that’s going to happen to your body and that’s what’s going to stay with you for the rest of your life. So you just want to make sure you make the right choices with the right knowledge.” So that is all for my presentation, Stephanie.

Stephanie Chisolm:

That was fabulous and incredibly thorough. And I think one of the major points that I always like to stress to people is, when you don’t know, you go to the pro. But going to the expert that has done multiples of the type of diversion that you are selecting is really the best thing, because they know how to handle a lot of those nuances, if there were any problems that they can make adjustments. There aren’t many, but there are some urologists that are well-versed in all of the different techniques. I think it’s definitely to everybody’s advantage to go and ask people that specifically have done multiple types of diversions. I love the fact that you really did a nice job of talking about what happens when you take away some of the bowel and use it for something else. What are some of the impacts that you might have.

Stephanie Chisolm:

So what I’m going to do first is let our Survivor to Survivor volunteers, these wonderful patient advocates, speak about their various diversions first, because I think that will stimulate a few more questions. We’ve got a number of questions already. But I am going to actually start with Anita, if you don’t mind, because you have the most common type of urinary diversion. So Anita, why don’t you turn on your microphone and then talk a little bit about the factors that led you to have an ileal conduit.

Anita Cunningham:

Okay, so I’m only two years out from my bladder cancer surgery, so I am part of the organ sparing surgery that Dr. Smith was talking about. My decision to go with ileal conduit I think was mainly because I didn’t want to have to catheter, I didn’t want to have to deal with the supplies of cathetering. I liked being able to see the urine and know that if it becomes infected, I will immediately see it and I don’t have to wait for a symptom. I’m very touchy-feely about that. I mean, when I first heard that I had bladder cancer, my first thought was get it out, just remove it. The doctor said, “Well, you’re a little young and we should try some other things to do.” So he had me do the BCG, which didn’t work. I ended up with a T1 when I was diagnosed and then I ran into a T2 and then we decided to take it. So my choice for the ileal conduit was also something that I made the decision with a fellow bladder to bladder, or what am I saying?

Stephanie Chisolm:

Survivor to Survivor

Anita Cunningham:

Thank you. Survivor to Survivor person that I spoke with, which was super helpful. And we talked about the different diversions and I think I felt just more comfortable with this. I realized that I’m not getting away from the supplies. I still have to buy the, they call them an appliance. I still have to have the appliance. I’m wearing a bag on the outside. Anybody who knows me will always say, “I would never know. I can’t see it. I would never know that you’re wearing this.” So it hasn’t been an issue as far as that. Is there a bump on my stomach? Yes. I don’t have a flat stomach, but I think at 61 I would not expect to have a flat stomach, so I’m okay with that.

As far as the leaks and the different things that kind of come along with the ileal conduit, I think some of that is getting used to it and making your mistakes along the way and deciding, okay, if I would’ve done this, I wouldn’t have had this leak. Some of it is about me playing this mental game of how long can I wear the appliance and find out what that is. Then I wake up to a leak. So a lot of this is self-inflicted more than it is a problem with the medical supplies. It’s very easy. I come down with the system about every five days. I change it. I do it in the shower. It takes me all of about five minutes if that, to remove it, to dry myself off, to put it back on, and I’m ready to go. I’ve had one problem when I was out in public so far, and I literally just went in the bathroom, changed it, and I came back out and it was fine.

It’s all those firsts that you have to get through to realize that life will go on and everything’s going to be okay. And speaking about life, I am back to being super active. I just played two hours of pickleball today. I can go back to lifting weights. I am watching my grandbabies, I’m running around and chasing them. I went on a couple of bike trips over in Europe and I was able to ride the bike and do that. So I think life will get back to what your normal is and it’s good. I’m sorry if you hear this, I’ve got some construction going.

Stephanie Chisolm:

We’re good. We can’t hear it.

Anita Cunningham:

Okay. And I think that overall this has been a very good decision for me. Is there any questions that might help me guide any further information for this?

Stephanie Chisolm:

Well, let’s see if we have any questions, but Dr. Smith, when you talk to your patients who’ve had an ileal conduit, is their story similar to Anita’s?

Dr. Armine Smith:

Yeah, I think it’s a very similar theme, and I think it sounds like you’ve done a lot of research and you’ve kind of came up with the right decision for yourself. Now, were there any surprises or was there anything you wish you’d known before even making this decision? Or did you feel like you had everything kind of figured out by the time you came into that.

Anita Cunningham:

I don’t feel like I had anything because all of this happened during COVID. So all of the chat rooms were shut down, all of the patient, I mean the doctor-patient relationship, all of the medical places were shut down. So without the Survivor to Survivor program, I think I would’ve been lost, because I really got most of my information there. I found somebody to talk to. I even lost my doctor six weeks before my surgery. So it was just crazy going through COVID with that. I think I knew my personality well enough to know that I really thought that if I can catch a urinary infection early by seeing any kind of change in the urine, then that will satisfy me. That’s how my brain works, and that makes me feel comfortable knowing that I can do that.

Stephanie Chisolm:

So Mary, you have the next most common type of urinary diversion. Talk about your diversion choice. What made you decide on a neobladder and what has it done for your life? How has it impacted your life?

Mary Wink:

I’ve had my neobladder for 12 years and everything has been going great for me. When I was diagnosed, it took them a long time. I struggled for two years before I was even diagnosed with bladder cancer. They kept saying, “It’s because you’re older and you’re fine.” And I said, “Something’s not right.” So after two years when they went to scan my pelvic area, they actually shot over and got the bladder and went “ooh” So they kind of found it by mistake, because they weren’t even looking in that direction for me. But once I was diagnosed and had three different opinions and got into three different doctors that each one had a completely different outlook on it. I got into a doctor that did many female neobladders. So I was very comfortable with that. That was very important to me. After looking at everything, I was diagnosed as a T1 and a very aggressive cancer, and I chose not to go with the BCG, I just didn’t want to go in every three months or six months and go through that.

So for me, I just wanted to try to have as normal life as I could, and the other diversions did not appeal to me. I knew the surgery was going to be tough as probably one of the longer ones to recover from. But I felt once I make it through on the other end, I’m going to be better once I make it through the other side. I chose to go with the neobladder. The things that they talk about with the neobladder, like a year ago I went in and I just googled it and it said, you’re going to have this and you’re going to be incontinent and you’re going to have to… I went, “Oh my gosh, I never would’ve chosen one of these.” So I think I went yet I had a lot of information from the doctor, but I wasn’t familiar with BCAN, didn’t have the Survivor to Survivor experience.

So I really didn’t have a lot of background information other than what the doctor was saying, “You’re healthy, I think you’ll do fine with the neobladder.” And I chose and respected that opinion, because I didn’t want to go with the other diversions and came out. I am continent day and night. I really front load all my fluids, because I know how important it is to get all those fluids. When we talk to people to say how important it is, it becomes our new normal. And to go to the bathroom three, four hours, I find it easier for me, because if I go somewhere, I can go to the bathroom before I leave and I’m good for three, four hours. If you’re with other people, it’s like, “Oh, I got to go to the bathroom.” I go, “Yeah, I’m good.”

So I think what for us becomes a new normal, I now after 12 years, I really stop my fluid intake at 7:00 pm. I sleep through the night and go all night long. Just in the morning I have a full sensation and empty my bladder. Yes, it does take longer to empty your bladder, very definitely. But that has just become part of my daily regimen and what my morning is going to look like. So if I’m going somewhere, I just make sure I plan that time and it works fine for me, and I’ve never had to cath. When we talk about it in our meetings, I said, “I don’t even know what one looks like,” because I didn’t have to do that. So I learned how to empty my bladder. For me, fortunately, that has all gone well, because everyone has a different story when they come out of their surgeries. We all, I think, are individuals as the doctor will attest to that as well.

Stephanie Chisolm:

Dr. Smith, is it more challenging to do a neobladder correctly in a woman than in a man, because the urethra is shorter? Is there challenges that you have to adapt to?

Dr. Armine Smith:

I think there are, just because women have less bladder cancer than men do. It’s just anything in women and bladder cancer is less studied than men. As I mentioned, the organ preservation has kind of been around for a while, but hardly has ever offered in a lot of places that I know, and that also speaks to the fact that women are a little bit underserved in that sense. Urethra is shorter in women. That is one of the reasons the continence can be a little bit more tricky in women. But at the same time, a lot of women can also deal with the incontinence with the age and bladder overactivity. So a lot of times when you bring up this conversation, they say, “Oh, I’m already having to run to the bathroom more frequently and this is not going to change things for me quite as much.”

But I think one thing that is really just unclear is why some women go into urinary retention and we just don’t have any answers to that. I think in men it’s a little bit more easier to conceptualize and kind of see. When men usually go into urinary retention with a neobladder, there’s usually a scar buildup at the area that is connected to an stomosis. In women sometimes they can have a perfectly open urethra, but they would not be able to empty the neobladder. So yeah, I think we do need more studies in women and better kind of surgical techniques in women.

Mary Wink:

And I did have a complete hysterectomy as well, because that is what they recommended 12 years ago, and I think that has changed over the course of the years that you’re doing less of that. And some of them are saying, because some of those organs are going to help support that neobladder. Even since I’ve had mine, there’s changes as you know, that you’re doing more organ sparing.

Dr. Armine Smith:

Now Mary, I have a question, so what appealed about neobladder the most to you and what resources did you have besides, it sounds like you had a great three consultations and found the right person to do the surgeon were able to get all the information from your doctor? But did you have any physical therapy, pelvic floor, anything like that or is there anything else?

Mary Wink:

I didn’t have any of that. My first consultation with a doctor was he came out of medical school and he had seen one done and was very confident that he could do the neobladder surgery. And we went, “Yeah, that’s not going to work. We’re not comfortable with that.” We went to the Mayo Clinic, which you’re probably familiar with, and met with two doctors there, and they came in and said, “I think you’re a very good candidate for the neobladder.” And this was back in October, and they said, “I think you should go home and enjoy your holidays, because your life will never be the same.”

I thought, am I being punked? That just wasn’t what I wanted to hear. Then I got in front of UW-Madison in Wisconsin and then got in front of a doctor who had done a lot of the female neobladders and explained everything and his team, and they actually had two teams during surgery. They had a team that came in and did the neobladder and they had a team that came in and did the hysterectomy. So there was a number of people that were on that surgery, and that just made me feel comfortable to do that. I did speak to two people that had neobladders, one that was very successful and did well, and another that she wears a diaper every night and she’s okay with that, and it’s like, “I’m not okay with that.”

It was never recommended to have physical therapy, but I spoke with somebody and said how important it is to get yourself as strong and healthy before surgery. So I had exercised every day and really did a lot of core exercises, and I continued to do that daily. So I think that’s really important is to get as healthy as you can before the surgery and get as strong as you can. So that was my going into the surgery, was to try to prepare myself and get as healthy as I could prior to, because it was going to be a little tough surgery. So that’s kind of how I went in and the attitude I went into.

Stephanie Chisolm:

Well, great. Well, let’s hear from our third volunteer that comes on here. She is our super BCAN of Hope from 2022, right, Karen?

 Karen Godfrey:

Right, yes.

Stephanie Chisolm:

So Karen has been one of our longest volunteers. I remember meeting Karen way back early in the early years of Beacon. Karen, you have an Indiana pouch and that’s not the most common type of urinary diversion, and you’ve had it for a while. What guided you to that decision?

Karen Godfrey:

Well, I tell everybody that my surgery was back in 2004, and that was before there was any help out there for any of us. BCAN hadn’t come on the scene yet, and there was nothing from the American Cancer Society that I could learn from. So it was my surgeon that put me through the education part and the surgery and the recovery. Then also during recovery, it was, you learn by experience, because there was still nobody to talk to. So my diagnosis at the beginning was T2, muscle-invasive, and there was no protocol at that time to do chemotherapy. So I went directly to surgery within three months of my diagnosis. I tell everybody that my story is not typical, but I am so incredibly fortunate that my general practitioner just picked a urologist to send me to and my UTI that he supposed I had wasn’t clearing up.

The fellow that he sent me to had really good training in Chicago. He had come back down to Florida where I lived and was with a practice that could do all three diversions. He’s the one that gave me the information about the diversions. The main reason that we talked about the neobladder and the Indiana pouch was my age and my overall general health. I was still young, I had excellent health other than having muscle invasive bladder cancer. My thought at that time was whatever it takes to rid myself of the cancer is more important than the diversion. So we discussed the neobladder. My surgeon thought that my urethra might possibly be involved, so that was kind of on the table, but he wasn’t certain that that would be a possibility. We talked about the Indiana pouch and we talked about the ileal conduit or the IC.

I was fine with any of the three, because not being able to really learn a lot from other people, I didn’t have a lot of stories to compare with. So it was, “Okay, doctor, when you get in there, whatever you find, do what you have to do and give me what you feel like is best for me.” So I did not know until I woke up from the surgery that I did have the Indiana pouch. In recovery time there was really no home health that knew a lot about the Indiana pouch. So I was kind of on my own to figure out what was happening during the recovery. I can say like Mary and Anita have said, a lot of our surgical recovery is all the same. We go through what’s working, what’s not working, and how we can figure out what works for us best and being very proactive in figuring out what will be the best for us.

I think I was about six weeks out before I really learned that I wasn’t totally emptying my pouch each time that I catheterized, and it was because I really hadn’t had good information from the nursing staff in my recovery time. I can tell you that a lot of the tips and the tricks that I have learned down through time have come from don’t do as I did, but do as I’ve learned.

I learned early on that hydration is really key to having good function with the kidneys and with our pouches. My surgery was in ’04, by ’06 I was active with BCAN and by ’07 and ’08 we were talking to people in the local area. And by ’09 we had a support group down here in Florida. I was learning with them and through them and because we’ve always been open to anybody and everybody, it’s not Indiana pouch people or neo people or IC people, it’s everybody combined, we’ve learned together what works and what’s best and how people have adapted. It doesn’t matter what diversion you have, we can adapt to what works for us and have a really good quality of life. I’ve had grandchildren born since my surgery. I carried two at a time on my hips, because they were only a year apart and you pick up one and the other one wants up there too. So here I was walking around with two babies on my hips and I have not had a hernia because of that.

I feel like my life has gone on just like it was before. I just pee differently. Catheterizing is no big deal at all. I want to show you, this can fit in your sock, it can fit in your purse. It’s the only thing you really need when you leave the house. But like Mary said, if I know I’m going to be out of the house, I empty before I leave. It’s kind of telling the kids when we’re getting ready to leave the house, “Go to the bathroom,” and they’ll say, “I don’t need to.” And we say, “Well, go anyway.” So it’s rare now that I need to void when I’m out in public.

In the beginning you’re kind of paranoid and you’re just scared to death that you’re going to get somewhere and you’re going to have an issue. And so you are more anxious than you really need to be. I try to tell everybody, we should not let our diversions rule us. It’s just a part of who we are now, and we are the boss of our diversion. So don’t let setting an alarm clock telling you what you have to do and when you have to do it. In the early stages, I would say the first year or so, those of us with the neo and the Indiana pouch probably do need to get up at night.

I see people don’t, because they will have a night bag that they put on so they can sleep through the night a lot quicker than we do. But eventually you will get to the point where you can sleep through the night. I’m a night owl, so it’s like 11:30 pm, midnight before I’m down for the count and I’m good to go till 6:30, seven o’clock in the morning. I drink liquids throughout the day. I don’t try to lessen them as the evening comes on. As far as having good healthy blood work, that’s the one thing that the doctors will be watching after your surgery is every time you have a checkup, they’re going to look and see how your kidneys are functioning. I just had my 19-year checkup with my doctor a couple of weeks ago and he said, “Your blood work is perfect for you.” And I have not had any issues with any kind of backflow, any kind of B12, vitamin D. I’ve been just a little bit low on vitamin D. But I mean, I think at my age that’s probably not necessarily the Indiana pouch’s problem.

B12 has been fine. So I can say that I have not had any issues with the Indiana pouch that would have made me think down the road, “Not sure that this was a good idea.” Being in my early 60s when I had the surgery, I’ve had 20 years of living with no more than having to take a catheter in my purse with me when I go somewhere. One thing about learning how to fully empty your pouch, I believe that those of us that have gone through the surgery and we have made use of the Survivor to Survivor group prior surgery, need to stay in touch with the people that we’ve talked to about our diversions. Because during the recovery period, that’s when you have a lot of questions that that person can help you with in trying to figure out how you’re getting through the training stage, as we call it.

Learning how to empty an Indiana pouch is an art. It’s not a matter of just having the catheter in and when it quits draining, you’re done. I can tell you what I say, and then Dr. Smith can tell me whether or not I’m totally out of the ballpark or not. But I envision my pouch as a water filled balloon, and if you have this balloon in your hand and you squeeze it, the water inside that balloon is going to move to another location. So when I am cathing to empty, when I get the initial stop on the catheterization, I press on my tummy and or jostle my tummy to hopefully move any urine that might still be in the pouch to another location so that the catheter finds it. And nine times out of 10, you will get quite a bit more by doing that.

So I think that is one of the healthy things that I’ve been able to do over the years. Then also, because our patches will produce mucus, it gets less during the ensuing years. But if you let up on your high hydration, you will see an increase in the mucus. You don’t want to be clumpy looking. So envisioning this water fill balloon again, I’m thinking if as the balloon collapses down on itself as the water is emptied or the urine is emptied out of the balloon, some mucus can get trapped into a pocket or a little corner of this pouch. So if you’re not staying well hydrated, that little bit of mucus can get stuck there. And that’s where you would start growing a bladder stone. So if you’re really hyper on doing your liquids and if you work to consistently empty the pouch every time that you go to make sure that you’re fully emptying, you’ll have a healthy pouch. I’m sure that there’s a lot of questions with what I just said, so we’ll wait and see what everybody asks.

Dr. Armine Smith:

I do have one question now. Did you have to modify your diet in any kind of way for the mucus production or the hydration is kind of all you’ve done?

 Karen Godfrey:

One thing that I have always done is I’ve always had citrus in my drinks and I do drink cranberry juice and stuff like that too, but I have felt over the years that the citrus has made a difference in my pouch. Some people think that milk products will make more mucus and I’m not sure, because I’ve never noticed a big difference. But it could be the difference in people’s digestive systems too.

Dr. Armine Smith:

Yeah, no, that makes sense. I’m so glad you brought up kind of the abdominal musculature, because I think we forget that there are a few different ways to empty the bladder or neobladder or pouch. And abdominal muscles also create pressure, and a lot of people with the neobladders kind of end up urinating that way, just putting some pressure on the abdominal muscles and trying to get the bladder. And now with the Indiana pouch, I haven’t heard that actually. I think it’s a really great point for people to know. That you can use this Valsalva or the abdominal muscles to get the pouch to squeeze a little bit better.

Stephanie Chisolm:

So this has been wonderful. I know that one of the common threads that I noted on my page over here is many of you went for a while before your initial diagnosis. So Dr. Smith, I know that that seems to be a trend for women in particular, because when they have any of the signs and symptoms of bladder cancer, the urgency or frequency, they typically occur with aging. And even in the case of hematuria, if they don’t go to a urologist first, they often will have a delay in their diagnosis. And for some it can be a couple of years as we’ve just heard. So do you see that frequently that many women, by the time they get to you, have already gone through multiple rounds of perhaps antibiotics for urinary tract infections, because nobody saw that they had bladder cancer? Is that a common thing?

Dr. Armine Smith:

Yeah, that’s 100% true. I feel that is very common for a woman to have at least a couple of diagnoses of UTI before ending up with the urologist. I think some things that are different in women versus men, men freaked out when they see a drop of blood in the urine. Women for them, for us, it’s not quite as different as having the menses. So you don’t just run to the urologist. A lot of people end up in the minute clinics and they get a course of antibiotic, and then symptoms continue. Blood continues, they go get another one, and then for a while, and then they’re like, “Something’s not right.” Then they end up with the urologist. Very common story with women. It’s very wildly known that there’s a delay in diagnose of women and then some women are diagnosed in a later stage just because one of the reasons being the delayed diagnosis. Yes.

Stephanie Chisolm:

Okay. Well, we have some time, so let’s get to the questions from our participants. I’ve heard several neo people saying that they’ve had stones due to the use of staples to form their neobladders. Should a patient not have surgery with a surgeon that still uses staples? Is that a common thing, Dr. Smith, that people use staples to assemble the neobladder that could then, because they don’t dissolve, form calcifications and form stones in the bladder?

Dr. Armine Smith:

Yeah, so yes. So staples have no business in a neobladder. Okay, because we use the staples a lot of times to reassemble the GI tract and the urine that comes in contact with the staples can form the stones on the staple line. In the ileal conduit, it’s not an issue, because the urine continuously moves. And in the neobladder, in Indiana pouch, it usually stagnant. So it can sit there and kind of form this calcification on the staple line. So what we do usually is remove the staples and we stitch it up. There’s some people for Indiana pouch would use the dissolvable staplers, so not the metal staplers. But yes, for anything that’s a continent diversion should not have a steel in there. Or sorry, not a steel, but staple in there.

Stephanie Chisolm:

Right. Yeah, Mary, did you have that? Is that what you were saying?

Mary Wink:

I do. I’ve had x-rays done and they’ve looked and said, “What has happened?” It looks like I swallowed a box of staples, because I’ve seen the x-ray and I have lots of staples, but I’ve not had any problems with forming stones. I’ve been fortunate not to have gone down that path. But it was quite interesting when I didn’t say anything to them when they took the x-ray and then they went, “Oh, what happened?” So it is, it looks like-

Stephanie Chisolm:

Did you swallow staples?

Mary Wink:

Yeah. Did you swallow a box of staples? Because that’s what it looks like. I have lots of staples. But fortunately I’ve not had an issue. Hopefully I won’t.

Dr. Armine Smith:

Do you get pulled over at the airport?

Mary Wink:

No, I haven’t.

Stephanie Chisolm:

Okay. Well, that’s a good thing. So let’s go to another question, and I think this is something that you can just speak to Dr. Smith. Can you use supplements to increase magnesium and other things that you’re losing because of your diversion, because of that piece of intestine being rerouted? How should patients attack that? How should they talk to their doctors?

Dr. Armine Smith:

Yeah, so I mean, I would discourage people to go and use the supplements unnecessarily unless there is a diagnosis of low magnesium or low potassium. Like I said, the most common metabolic derangement we see is the acidosis in patients who have neobladders. For that sodium bicarbonate or citrate, these are the things that are used. But yes, I think it’s okay to use the multivitamins for daily activities, but I would recommend check in with the doctor before overusing these.

Stephanie Chisolm:

Okay, super. This is great. And then let me get to the next question. Is self-catheterizing the answer to urine retention within neobladder?

Dr. Armine Smith:

And that kind of goes to the point that I brought up earlier with the physical therapy. So pelvic floor physical therapy. So usually the first thing we do is catheterize obviously, to let the urine out, because we don’t want extra urine accumulating in the neobladder. However, there can be some techniques to help mitigate emptying of the neobladder more completely. So for residual urine, some people will use their abdominal muscles, some people will learn to relax their pelvic floor a little bit better, and the physical therapist can work with them on that. Then there are some people who do the somethings called Credé’s maneuver, where you just directly push on your neobladder and help excrete some of the urine. But catheterization is one of the means to get rid of it just because accumulation of the urine can cause problems down the line.

Stephanie Chisolm:

Right. I think a lot of people don’t even realize that there is a subspecialty of physical therapy where that therapist focuses on pelvic floor strengthening and just that whole general area. So again, that’s a good question to speak with your doctor and to possibly get a referral. Does the history of colon polyps dictate a certain direction if you’ve had a history? I know you mentioned that earlier in choosing if you’ve had any problems in your colon previously, but just the polyps, is that something that dictates your choices?

Dr. Armine Smith:

Yeah, I think that can be something that should definitely come up in the conversation with your surgeon. But benign polyps don’t necessarily preclude you from using the colon as a segment for a diversion. There are some polyps can be pre-cancerous. There are some people who just form a ton of polyps, which can be a sign of predilection to having colon cancer in the future. So conditions like that will probably make the colon as a pouch less desirable. But yeah, if you’re heading down the line, the Indiana pouch, colonoscopy needs to be fairly recent within kind of the recommended guidelines within a couple years or so. And then these are the conditions that one needs to be aware of.

Stephanie Chisolm:

Well, I think the next question, which option holds the biggest active physical limitations? I think you all have addressed that in that most of you haven’t said that you have any significant physical limitations. I mean, do you find yourselves challenged?

Anita Cunningham:

I would say that the only limitation that I would be aware of, that I need to be aware of, is with the bag being on the outside and as it fills, then if you were to say, bend down for a long period of time or put extra pressure on that bag, there’s only one way for that bag to go, which means it’s going to go back into the appliance and it may push liquid out of the appliance and cause a leak. But it’s one of those things that I’m aware of and it’s manageable. If I feel like my bag is full on the right side, then I learn to pick up something on my left side so that I’m not putting pressure onto that area. That would be the biggest thing. Other than that, I don’t really even think about it. I just go about my day. And thankfully, after, like I said, I’ve been two years out, there’s days that I just forget that I have this new normal until I go, “Oh, it’s time,” and then I have to go and empty the bag and then I’m done.

Dr. Armine Smith:

Yeah. I think Anita it’s probably, as you’re kind of so rightfully bringing it up, it’s very little limitation with the ileal conduit. I think people have the biggest misconception about this type of a diversion. They feel like it’s going to preclude them from doing things that they love. A couple of things that I wanted to ask you is how you deal with nighttime. Do you switch your small pouch to a bigger bag? Do you not lay on your side a certain way? Then the second thing is, how do you deal with swimming? Because those are the questions I get asked all the time.

Anita Cunningham:

That’s all right. As far as nighttime goes, I plug into a night bag, and so that hangs off the side of the bed and I’m good to go. I sleep all the night through, so that’s not an issue. I’ve heard some weird things. Some people had a tube and they just drained it to their bathroom, and I’m like, doesn’t sound right. But yeah, so that’s super easy. As swimming goes, I’m not a big swimmer, and so I have yet to be in the pool with it. I have spoken with my Survivor to Survivor person, and she swims and has no trouble. The issue that I think people are concerned about is, will the appliance come off because of the water in the pool? And will there be a leak, because of that? But these appliances are waterproof and they’re built that way. And so the adhesion and everything is strong. Usually that won’t happen unless you’re ready to change the appliance anyways.

Dr. Armine Smith:

And then also there are swimming belts that people use sometimes to cover up the pouch if they want to get in the pool, in a public pool.

Anita Cunningham:

And I use that daily anyways, because I like my pouch laying sideways. And so I use this, oh gosh, the name is escaping me, but it’s like a hernia belt.

Stephanie Chisolm:

A Stealth Belt?

Anita Cunningham:

It’s a Stealth Belt. Thank you. Thank you. It’s a Stealth Belt. I love it. I love my Stealth Belt. It keeps everything close to the body, so you just have no worries whatsoever about this pouch hanging down, filling up, getting heavy, whatever. It just keeps everything streamlined and you’re good to go.

Karen Godfrey:

Stephanie, I’d like to say as far as swimming goes with the IP, I am always a little bit nervous about being in a public pool and the health of the pool, so I always have a Suresite type of bandage. It’s clear. Dr. Smith might be able to explain a little bit better than I am, but it’s something that adheres to your skin for the time that you need to be in the pool and you can take it off. And when I’m doing that, then I have a tiny bit of gauze that I put right over the stoma itself before I put the Suresite on. Then I’ve got another question about the Indiana pouch and the optimum amount that you think that the pouch should hold, 4-500 CCs. Is that a good stretched pouch?

Dr. Armine Smith:

Yeah, that is usually the amount that we aim for.

Stephanie Chisolm:

Right. Well, I think we’re really coming up on time. We’ve been having a phenomenal discussion. I thank you all.