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Long Term Management of Urinary Diversion

With Dr. Anne Schuckman, Dr. Kamal Pohar, and Patient Advocates Eric Notti and Linda Waddell

Year 2021

Part 1: Management of Surgical Complications of Urinary Diversions

Video (16 min) | Transcript (PDF)

Part 2: Managing Metabolic and Renal Complications of Urinary Diversions

Video (12 min) | Transcript (PDF)

Part 3: The Patient Experience with Long Term Management of Urinary Diversions

Video (11 min) | Transcript (PDF)

Part 4: Question and Answer

Video (18 min) | Transcript (PDF)

Full Transcript of Long Term Management of Urinary Diversions

Stephanie Chisolm:

Welcome to Treatment Talk, a live bladder cancer video chat from the Bladder Cancer Advocacy Network. These Treatment Talk discussions really are unique in that they feature medical experts. Tonight we have Dr. Kamal Pohar and Dr. Anne Schuckman with us. Also, some patient advocates to talk about their experience. They’re really meant to increase your understanding of existing and new treatments across the spectrum of a bladder cancer diagnosis and to showcase patient questions that you can ask in advance to help you be empowered in making decisions regarding your treatment and care. Then we also want to highlight some current treatment advances for bladder cancer.

Today’s Treatment Talk is really focused on the long term management of urinary diversions. Bladder removal is really the gold standard of care for people, especially with non-muscle invasive disease, who have high risk disease and it’s getting closer and closer and obviously, for those with muscle invasive disease. We really wanted to try to showcase some of the long term issues that you should be aware of as you move forward if you haven’t already had your diversion.

Dr. Anne Schuckman:

All right, great. Thank you so much, Stephanie. I’d just like to say thank you to BCAN, Morgan and Stephanie for inviting us tonight and giving us the opportunity to do this session. Want to say an especial thanks up front so I certainly don’t forget, to Eric and Linda for being willing to come on this webinar with us and share their experiences. getting there. Okay, as Stephanie mentioned, tonight we’re going to talk about urinary diversions and really focus on long term complications associated with urinary diversions. We’re going to split this a little bit into two sections tonight. We’re going to talk about mechanical or surgical type complications and then longer term, metabolic and infectious type complications. We’ll jump right in.

As we all know, the goals of urinary diversion after bladder removal are to preserve function for patients. Whether that’s sexual function, bowel function, or urinary function, to increase everybody’s acceptance of getting a cystectomy if needed, allow timely use of adjuvant therapies after surgery, achieve low complication rates, and achieve the best quality of life for patients with a urinary diversion.

Dr. Anne Schuckman:

Options for reconstruction include an ileal conduit, an orthotopic neobladder, a continent cutaneous diversion, usually known as an Indiana pouch. These can be created either with an open technique or a robotic technique.

Short term complications can include things like urine leak, bowel leak, acute infection, or dehydration. We’re not going to focus too much on that tonight. As I mentioned, we’ll focus on mechanical issues such as uretero-ileal strictures, parastomal hernias or stomal stenosis. Functional issues such as incontinence, hypercontinence or retention and bowel dysfunction. Then non-mechanical issues such as metabolic problems, urinary stones or infections.

Ureteroileal stricture is a type of problem that can happen regardless of the diversion type that you have. The incidence of this issue is about 5% to 15% in most described surgical series and usually this problem happens in the first year after your reconstructive surgery. What this problem is, is a stricture that develops where the ureter is sewn onto the bowel segment used for the urinary diversion. The way this presents is with dilation of the kidney system on the affected side and this can be picked up just on x-rays, such as this x-ray where we see one side is much bigger and more full of dye than the other, indicating poor drainage. Or it can be picked up due to recurrent urinary tract infections or a worsening of kidney function in the immediate post surgical year.

These strictures can be handled in several different ways. Sometimes we’re able to manage them what I call percutaneously. Either going through the back and placing an acrostomy tube directly into the kidney and then trying to come down from the kidney to the diversion to use a wire and either a laser or a balloon to dilate the stricture. These percutaneous type of interventions have a little bit lower success rate if the stricture happens to be on the left side, if it happens to be a longer stricture, or if that kidney’s already not working too well.

Dr. Anne Schuckman:

Strictures can also be fixed just with going right back in either robotically or with an open surgery and reattaching the ureter to the urinary diversion. This usually involves cutting out the scarred part and then simply reattaching it. This works really well. Obviously, you need to undergo a surgery to have this done and so sometimes we try to delay this. But when we do have to resort to this, it’s about a 93% success rate. Might be a little bit more successful if patients have not had a prior attempt at laser or balloon dilation. But again, it’s a big surgery that people have to go through.

Let’s focus now a little bit on some issues with ileal conduits or urostomies. I like this photo and it’s really topical this week, since it’s Halloween. A urinary conduit is urine that drains to a bag on your abdomen. This is a really happy patient. He has his stoma on the right side, looks like it’s in good shape, his bag is hanging on in good position there and so is his jack-o’-lanterns.

Unfortunately, things aren’t always quite this perfect. Patients can develop problems with a hernia around the stoma, which can create issues with the bag staying in place. Potentially, it can create bowel problems with obstruction or diarrhea. Due to the contact of urine with the skin at the site of the stoma, patients can develop skin issues. This is really an extreme case where you see this encrusted skin and unfortunately, this patient had had some problems and then instead of coming to us, actually to deal with them, just kept cutting the hole bigger for the wafer and then more and more skin got affected. Or patients can have problems with prolapse of the stoma and skin irritation. The prolapse is pretty uncommon. The skin irritation, I think is a fairly common issue.

Dr. Anne Schuckman:

Focusing on parastomal hernia, the incidence is really all over the map in studies that are done, anywhere from 4% to 50% in series. That’s because probably only about, I don’t know, 4% to 10% of patients may have any symptoms related to the hernia. But if you do CT scans, which everyone is having for surveillance for their cancer, there may be what’s called a subclinical hernia, meaning it’s there on the x-ray but you can’t notice it as a patient and there’s not any issues. Several things that can happen; maybe bowel obstruction, pain, bulge at the site or problems with the stoma bag leaking.

There are options for repairing a parastomal hernia. You can do this with the traditional open surgery where you either move the stoma to the opposite side and fix the hernia. There’s minimally invasive ways to fix these hernias, going in if possible with either laparoscopic or robotic surgery and placing mesh inside the abdomen to block that hernia site, but not moving the ileal conduit to the opposite side or to a new site.

Then because this can be such a big problem for patients, there have been several groups that have looked at ways to prevent this prophylactically. There have been several studies looking at putting in mesh actually at the time of surgery, at the time the creation of the conduit rather than waiting to have to fix the problem down the road. There was a study out of Sweden that showed actually with this prophylactic mesh placement, they were able to reduce the hernia rates by about half at the time of follow up for ileal conduit operation. We can talk more about this in the chat later.

Again, possible disadvantages for urinary diversions and this is a patient choice tool that actually Dr. Pohar introduced me to several years ago. You can see that about 15% of patients complain of a symptomatic hernia and a very low number, 3%, may have some tightness of the stoma with an ileal conduit.

Dr. Anne Schuckman:

With what’s called a continent cutaneous diversion, or a catheterizeable stoma, there can be other types of complications. Usually these diversions are made out of colon and the stoma can be brought up either to the belly button as in this picture, or to a small stoma in the right lower quadrant. Then a patient passes a catheter through that stoma several times a day to empty the diversion.

Issues that can come up long term include leaking from the stoma or incontinence, stricture of the stoma or stenosis, or metabolic abnormalities just due to the nature of using colon as part of the diversion. Many of the issues with the stomas can be handled just in clinic or with a minimally invasive type of procedure under sedation. If there’s a lot of leaking for the stoma, often we can inject things like collagen or other bulking agents in the submucosal area through a scope, either in the clinic or again, under sedation in the operating room. If the stoma’s too tight to put the catheter in, we can usually dilate this in the clinic or again, do a very small type of procedure under sedation, rather than having to revise the whole pouch. Major revisions are fairly rare with the Indiana pouches.

How about neobladders? The number one reason people often don’t get a neobladder is for fear of complications. Whether this be a fear of incontinence or a fear of having to catheterize, patients are certainly on both ends of that spectrum.

Dr. Anne Schuckman:

We’ve looked at functional outcomes in lots of different hospitals and academic groups in terms of continence with neobladders. In the most ideal situation, institutions report about a 96% incidence of daytime continence and about a 75% incidence of nighttime continence. But this is really numbers that are created in high volume centers, high volume surgeons, potentially with the most perfect data collection.

We did a study at USC looking at continence in all comers for all male patients who have had orthotopic diversions, who are coming to see us for their follow up. So this wasn’t really a selected group, it was just anyone coming into the clinic with their follow up, regardless of how far they were out from the time of surgery. These are patients who had a cystectomy between 2000 and 2015 and we looked at about 200 patients. We gave patients a pad questionnaire to quantify what type of pad, how many pads, the size of the pad and we looked at different time intervals when we did the analysis.

Interesting, what we found out is that really the daytime continence for males with neobladders didn’t get to its peak point, which was about 88%, until 12 to 18 months after surgery. I think it’s really important for providers and patients to know that the expectation is that this is a long game with the neobladder. It’s not going to be perfect right away. I don’t know if I can go back. With the nighttime continence in red there, you can see that actually it didn’t peak until even longer, one and a half to three years after surgery. That number was around 60%. So there is more nighttime leaking than daytime leaking for patients.

The catheterization rate for our neobladder patients long term was quite low in men, only about 13%. But most men didn’t have to start catheterizing right away. Many didn’t have to start catheterizing again, until almost a year and a half after surgery.

Dr. Anne Schuckman:

In women, the catheterization rates with neobladders are much higher. This study states numbers almost as high 70% or 80%, but I think that most series state that the numbers are more around 20% to 30% of women who may need to catheterize.

We’ve looked at what we can do in terms of surgical innovation to try to prevent hypercontinence or retention in women patients undergoing neobladder surgery. We’re starting to really look more extensively at whether preserving the female sexual organs, such as the uterus and the vagina, may help create a more natural pelvic support system that would help women void better with a neobladder. Or whether doing some sort of reconstruction with essentially using some techniques from gynecology, such as a sacrocolpopexy might help to create a better situation for women to avoid having to use intermittent catheterization.

Again, from the patient choice tool, you can see that really problematic issues with daytime urinary leakage for men are about 10%, for women about 20%. Catheterization rates really line up quite well with what we saw at USC. For men, about 15% and women, about 30%, but more people do have leakage at night, as seen in that last frame. I actually think that sounds a little low compared to my clinical experience.

Dr. Kamal Pohar:

Thanks very much. Good evening to everyone and good afternoon. I know we’re all in different time zones in the country. It’s a pleasure that you’re all here with us today to join the program. I also wanted to thank BCAN. It’s always a privilege to be involved with any activity related to BCAN. It couldn’t be a more wonderful organization for patients and even healthcare providers. I also wanted to thank Eric and Linda for being with us and we’re looking forward to hearing from both of you as well.

As Dr. Schuckman pointed out, I’m going to focus on three topics. I’m going to focus on when one has a urinary diversion, what impact does that have in one’s overall kidney function and are there specific alterations that can happen in your bloodstream, which medically is referred to as metabolic and nutritional changes? And urinary tract infections, that’s always a common topic that everyone asks about and wonders about. Am I prone to urinary infections, and if so, what are the consequences to me? And kidney stones, or forming stones in the urinary diversion. Does that happen and why does that happen? Next slide please.

I’m going to get started with kidney function. It’s very well known that regardless of who you are in the population, men and women, as we all age unfortunately our kidney function declines. It’s a process of aging. Certainly common health conditions like high blood pressure, diabetes, certain medications we might be on, can impact our kidney function in a negative way. It’s known that in the United States and worldwide, men and women over 70 years of age achieve a definition where there is some degree of kidney impairment in at least 50% of people in the population. We know again, as we age our kidney function declines and that’s a fact of life.

Dr. Kamal Pohar:

Well, what about if you have a urinary diversion? It’s been an age old question that does your worsening of kidney function, is that expedited because you have a urinary diversion? Is that kidney function going to be worse? The reality is we don’t really know the absolute answer to that. But the majority of medical studies that have been done in this field demonstrate that probably not. Or there might be a slight worsening of kidney function if you have a urinary diversion compared to others in the population of the same age group, same health conditions. So overall, I think kidney function is going to be stable if you have a urinary diversion, relative to others.

But one thing that’s very important to recognize is that problems with a urinary diversion, like obstruction, maybe because of a stricture like Dr. Schuckman pointed out, where that ureter was sewn into the urinary diversion so that causes a blockage, that can impair kidney function. Things that I’m going to talk about; stones, urinary infections, metabolic changes, these can negatively impact our kidney function. Certainly, if you develop problems with a urinary diversion, this can harm your kidney function more so than just the process of aging. Next slide, please.

Well, what are some of these metabolic and nutritional changes that can happen? Well, a urinary diversion is made out of a piece of bowel. Whether that’s the use of ileum, the colon, it’s very different than the bladder we’re born with. The bladder is impermeable, meaning it doesn’t absorb anything. When the kidneys process our bloodstream, dump the things that our body doesn’t want and turns it into urine, that comes down through the bladder, the bladder doesn’t reabsorb anything, it’s impermeable. But obviously, bowel is the opposite. It’s function in life is to absorb things. So when the kidneys process things from our bloodstream, create urine, put it down into our urinary diversion, there’s a possibility and good likelihood that some of these constituents are being reabsorbed into our bloodstream.

Dr. Kamal Pohar:

One of the consequences of this might be things that normally wouldn’t be absorbed from the bladder we were born with can lead to acidosis in the bloodstream. That’s a condition that can lead to certain symptoms that we might experience. It can also change our bone health, it can lead to us having some loss of mineralization of our bone. There can be some consequences.

Now, what are some of these symptoms? Well, they’re vague and we often wouldn’t know that this is due to acidosis in the urinary diversion. Symptoms of acidosis are “I’m feeling tired or lethargy, or my appetite isn’t so good’; anorexia. Or “I just feel weak”, muscle weakness. These can possibly be symptoms of acidosis. Often though, as part of your normal health exam, a blood test will demonstrate that you have signs of acidosis and usually your physician will recognize this and it’s very easy to correct before you have any symptoms. Most of the time you don’t have symptoms. When your healthcare provider finds that there’s acidosis in the blood test, they can start you on a pill. Sodium bicarbonate is the classic pill that’s used to correct this acidosis. It’s very correctable. Often you won’t have symptoms because it’s recognized early and the problem is solved easily.

Vitamin B12 deficiency, this can happen because of the urinary diversion. When parts of the bowel are used, especially when greater amounts of bowel are used like a neobladder or an Indiana pouch, there might be a greater tendency to getting a vitamin B12 deficiency. Again, this is detected by your healthcare provider through a blood test. You can measure vitamin B12 levels. If it’s detected they’re low, they’re easily replaceable with options by taking a pill, there are options where you can put it under your tongue, or intramuscular injection which can be given once a month. But sometimes you can get pretty severe symptoms if you have a vitamin B12 deficiency. Not only can you feel tired, but more so you can have neurological problems, some nerve disturbances, tongue swelling. Sometimes it can be very severe. Important your healthcare provider recognize it and this be corrected. Next slide.

Not only can metabolic problems happen because one has a urinary diversion, but urinary infection. It’s common knowledge that a piece of bowel and bacteria live in harmony. Our bowel in our body is loaded with bacteria. They serve a very important purpose, they live in harmony with our body. But now we’ve taken this piece of bowel and we’ve created a urinary diversion from this piece of bowel. Now it’s not uncommon that we find that there will be continual bacteria present in the urine for someone with a urinary diversion. That likelihood is greater if you have an ileal conduit, when you compare it to a neobladder and even to a continent catheterizeable pouch, like an Indian pouch. But it’s very common to see bacteria.

Dr. Kamal Pohar:

But the important point is, we’re always hopeful that the bacteria in a urinary diversion and our body are living in harmony with one another. That it doesn’t lead to an infection. But for whatever reason, if that bowel bacteria harmony is tipped, an infection can ensue. The bacteria can start to act up and a urinary infection can happen. That can sometimes be pretty severe. It can lead to a kidney infection, which is called a pyelonephritis, it can get in our bloodstream, all of these are quite serious and can be harmful to our kidneys and harmful to our body.

Dr. Kamal Pohar:

But the good news is again, there’s often bacteria in our urinary systems, they don’t cause an infection, they’re living in harmony with our body. But some of the time the bacteria can tip the balance, we can get an infection. What’s really important though, is we have to be sure that there aren’t problems of the urinary diversion that have developed that are contributing to why the bacteria are there. That it’s not just a fact of nature, that it’s just not a fact of having a piece of bowel in our urinary system, but rather there’s a problem.

What types of problems am I talking about? Well, if there are stones present in your kidneys, stones present in your urinary diversion. Bacteria love hiding in stones. That can be a focus of the bacteria. There could be staples in your urinary diversion from the surgical construction. Obstruction can happen, like that stricture that Dr. Schuckman pointed out, that blocks the kidney. Bacteria love that environment. So it’s important that your doctor investigate. Not if you’ve had one infection or the occasional infection. But whatever draws the suspicion of your physician or healthcare provider that the number of infections or the character of the infections, or the frequency of the infections might lead to further investigation, looking for some of these findings, are they present? They’re often correctable to take away that risk of urinary infections. Next slide, please.

As I mentioned, stones can be a problem. Kidney stones are a prevalent problem in the United States. We know that during times of warmer climates in the summer months, not drinking enough fluids, especially water, other type of dietary constituents, certain factors in our diet, we’re prone to getting kidney stones. Well, if you have a urinary diversion, unfortunately the rate of getting kidney stones is higher. It’s up to 15% to 20% over one’s lifetime and that’s far higher than the average person in the United States of developing a kidney stone.

Dr. Kamal Pohar:

Also, you can get stones within your urinary diversion and it’s much more common with a neobladder or an Indiana pouch than it is with an ileal conduit. In an ileal conduit it’s very uncommon. But much more so, up to 10% to 15% in a neobladder or an Indiana pouch, you might get a stone. Why is that? It’s because some of these factors I’m talking about. The acidosis, pieces of bowel have been used so that changes the constituent of your urine, urinary infections can put you at higher risk of getting kidney stones. If you’re not emptying your urinary diversion well and storing a lot of urine behind. Your urinary diversion has a lot of mucus in it. These are all factors that can lead to the deposition of minerals in our urine, the formation of stones.

Once again, if stones are forming, it’s important for your healthcare provider to look into factors that are correctable. Are there things that we can identify about this urinary diversion or metabolic changes, correcting acidosis, that we can improve the likelihood that further stones won’t develop? Because these stones that often develop, they have to be treated surgically and we’re hopeful that they don’t happen. And next slide.

I want to thank all of you for joining us this evening. We look forward to questions.

Stephanie Chisolm:

So much. Thank you both, it was great. I know that there were a lot of questions and some have already been answered. I’d like to invite Eric and Linda to turn on their video at this point. We’re going to get a little bit about their stories with their urinary diversions and have a little chat dialogue. Then we’ll open it up for the questions that you’ve submitted. Again, if you have any questions, please be sure you put them in the Q&A box at the bottom. Eric, welcome. It’s nice to have you here. I’m very delighted that you’re willing to share your story about your neobladder. Tell us, how did you end up with a neobladder? Give us the short and simple so we have time for everybody to speak. But how did you end up with a neobladder?

Eric Notti:

Well, first it started with cancer. When I was looking into the different choices; basically there’s three. There’s neobladder, there’s the Indiana pouch, like Linda has, and then the other urinary diversion into a bag. I was trying to consider what I want to do and how I don’t want to be reminded of cancer. I felt as though that the neobladder would be more like my regular life. And it has been. That has been a tremendous onus from surviving cancer, is not to have this daily reminder. My life has come back pretty much to where it was before.

The only difference is I’m on a time clock, which is pretty natural. It’s every four to no more than five hours that I have to drain the bladder. That’s on a pretty much 24 hour clock. I still do the nighttime get up after about four hours of sleep, drain, and then go back to bed for the rest of the evening.

It was a decision of lifestyle and what kind of maintenance I wanted to have with it. I did look into everything. The possibility of side effects, the possibility of complications and just weighed them all together and thought that this was the best choice for myself at the time.

Stephanie Chisolm:

Great. Let’s hear from Linda first and tell us, continent continuous pouches are not the most common type of a urinary diversion. How did you get to that place, Linda?

Linda Waddell:

It wasn’t easy. I got a lot of information when I first talked to Dr. Pohar. Initially they were thinking that I would have just chemotherapy. That was something on the wall in my bladder. But that didn’t work out because the cancer had gone into the wall of my bladder. I read the information. I actually did see about BCAN and try to find out more about and different people speaking on what their experiences were. I was fortunate enough to know some people who referred me to two people who one had a neobladder, the other person had an outside bag.

I spoke to them and I mean, they both were pretty satisfied with their procedures. The person with the outside bag had said that she had had a bowel blockage. I don’t know if that was because of that, I don’t know because I ended up having a bowel blockage too. But I have a niece who’s a nurse and she said, “Well, Aunt Linda, I’m not a stoma nurse, but I have seen different people come in with the bags and things.” She told me about the irritation, about the skin around where a bag would be attached. She said she’d seen some really severe reactions from that. I have a friend who has a bag for his bowel movement and he’s had a lot of complications dealing with skin surrounding that.

Linda Waddell:

So I had a little bit of reactions from adhesives, so I guess I talked it over. But her input gave me more inclination with the Indiana pouch. Even though it was going to be a longer operation and I did have a total hysterectomy during the same operation. She was saying she thought I could handle it. She said with some patients couldn’t. Then Dr. Pohar reassured me that he thought I was healthy enough and he wouldn’t ever have even given that option if he didn’t think I would be able to cope with that catheterization every four and a half to five hours from the stoma. And the care of the stoma to keep it clean and free of bacteria, things like that.

That’s where I came up with my decision. I’ve been very happy with the decision. Like I said, I did have a bowel blockage and had to go back to the hospital at one point in time. But in general, I’ve got used to the schedule. I use my phone to remind me. I set an alarm, I put it at four and a half because sometimes you’re like, “Oh, boy,” and you don’t just jump up and catheterize. I give a half hour time limit that if I’m in bed, like, “Okay.” I’ll get out and I’ll do my catheterization.

I also though, have been able to feel full in my back. It lets me know that it’s approaching four and a half. My body just lets me know it’s approaching a time when I need to empty my bladder also.

Stephanie Chisolm:

Well, sounds like you really weighed the pros and the cons and had some guidance from your niece, who’s a nurse, to help you come up with that decision to make that. You mentioned that you had a bowel blockage, but let me ask Eric, have you had any complications from your neobladder that you’ve had to address in the long term? You’ve now had your neobladder for five years.

Eric Notti:

Yeah. I’m one of probably the rare ones that never really came up with anything that would be considered a real complication. Yeah, there’s the typical post operation recovery. You go through sometimes a bout of bowel problems, but that was within the first three months or so. Since that point, really nothing has come up, except for one incident which came up that I made Dr. Schuckman aware of. Is I passed blood once more and this was about a year ago. Made an appointment, brought in a sample. We did another cystoscopy just to make sure everything was okay and it was and it has never taken place since. Really, I don’t think we came up with, Dr. Schuckman, any real cause that we could find. It was just a rare occurrence.

But other than that, nothing really has come up along the way. Like Linda, when this neobladder is full, you really don’t need as much a watch, as you actually do as the years go on in recovery. Or at least in my case, you actually get that feeling of pressure like your old bladder. Like, “Hey, I’m full. It’s time to take care of this.” It was advertised as being just a piece of your intestine and has no nerve endings to talk back to you, but evidently as it fills up, it’s of course pushing against everything else and it all starts giving irritated like, “You’re taking up my elbow room.” Then you know and you should check your clock, check your time.

Stephanie Chisolm:

It’s definitely you’re living by the clock. Right, you’re living by the clock.

Eric Notti:

Yeah, I do adhere to the clock, but if ever you get involved in work or something, sometimes that will be an indicator that maybe I ought to check now. Yeah, it is time.

Dr. Anne Schuckman:

Yeah, maybe I could speak to that just a little bit, Stephanie. I mean, I think one of the what I would call underrated, long term issues with any urinary diversion and I’d be interested what Dr. Pohar has to say, is the issue of sleep, honestly. We didn’t address that at all in this conversation. With a neobladder, we’re always telling people to get up and void in the middle of the night. Or with an Indiana pouch, normally we’re asking people to get up and catheterize one time in the middle of the night. Even with a conduit, patients have the most ingenious things that they come up with to be able to put their urine bag in the right place by the bed. I have patients who have rigged up wall suction units in their house so that the bag stays empty.

But I do think thinking about sleep is a huge thing that patients could consider prior to surgery. What are you willing to be doing long term in the middle of the night? I talk a lot about that, particularly with patients who are having an Indiana pouch, because I mean, you have to get up and catheterize once. I know really long term, some people don’t because the pouches get big. But in the short term, for sure. And that lack of sleep can be a pretty serious factor for some patients.

Stephanie Chisolm:

Mm-hmm (affirmative). Yeah, I know a lot of patients I speak to because that’s the most common. The ileal conduit is the most common type of diversion that people end up with. That is a big consideration for a lot of people in terms of their lifestyle. They think, “I just want to be able to sleep through the night again.” There are lots of different devices that you can use to enable you to get a good night’s sleep and not have to get up. That little pouch can only go so far because it is made of intestines.

Stephanie Chisolm:

There are a couple of good questions that have come in. The first question is, I would change my urostomy pouch every seven days and had no problems with leaks or other similar problems. Is there any reason not to use a seven day routine as long as the pouches are not causing wearing problems? Dr. Schuckman, what do you say to that so others would know about that?

Dr. Anne Schuckman:

Yeah. Patients ask all the time about the frequency with which they need to change a pouch. And I think just to set a bar, the average is probably twice a week. I would say most of my patients say, “I just change it on Tuesday and Saturday. That’s when my daughter comes over and helps me,” or whatever it is. Or, “That’s when I do it.” I certainly have patients who wear their pouches longer. If you’re not having problems, I don’t think there’s any medical reason why you need to change your pouch more frequently.

The main reason people change them at that three to four day interval, is because if they don’t it’ll start to leak or they’re not confident that it won’t leak after that time. Personally, I think if it’s working for seven days, you’re not having skin problems and it’s not leaking, it is probably just fine.

Dr. Kamal Pohar:

Yeah, I think definitely if it works for you, then I think it’s very acceptable. But in general, one looks at the Wound, Ostomy and Continence Nursing Society, or WOCN recommendation. But the recommendation Dr. Schuckman points out is every three to four days and that’s really to prevent against skin breakdown that can occur. So use of adhesives and the wafer starting to saturate urine under the wafer, some of the preservatives start to get eaten away at when the pouch is on too long. I think really, the recommendation, it’s really for skin health. But if your skin health is good, and you’re not suffering from urinary infections, which is another reason to potentially change your ostomy appliance twice a week. If you’re having no downstream effects of keeping it on for a week, I think naturally it’s very acceptable. I have many patients who also adhere to the one week policy and not every three to four days. But again, I think it’s a very fine balance. It’s very specific for a given individual whether it’s acceptable to do it this way.

Stephanie Chisolm:

Okay, great. Let me get to another question then because we have quite a few. Is there any recommendation to avoid urinary tract infections as far as rinsing out a night bag with water or Clorox solution, or even a rinse of the pouch on a regular basis? Or is it best not to bother with those things and there’s not a whole lot you can do? What other kinds of things can patients do for all types of diversions, in terms of diet and fluid intake to reduce their risk of developing urinary tract infections?

Dr. Kamal Pohar:

I think that’s such an important topic. I think the starting point is hydration, I think that’s very important to really try to minimize the large count of bacteria that exists in the diversion. To dilute it and to reduce the concentration of bacteria. So good hydration’s great. Nutritional aspects, certainly it doesn’t hurt. The strength of the medical evidence that having specific types of nutrition or a certain diet reduces the risk, I think we’d be hard pressed knowing that. But I think a very healthy diet obviously builds immunity, builds strength, provides good nutrition to the body. These are all things that are helpful for our defense mechanisms. So I think that’s a very important point.

Dr. Kamal Pohar:

Cranberry juice is known in many fields of medical practice, whether you have a diversion or not, cranberry does change the concentration of the urine and can reduce the risk of urinary infection. I think these points are important. Changing your appliance in a structured manner on a specific routine, three to four days, is important. If you’re getting infections, that nighttime bag, changing your bag once a week, the nighttime bag. I know that’s a recommendation of WOCN. And they do recommend cleansing your ostomy bag with the product that was mentioned in the question. That it is a good way to cleanse your bag. I think many of the points were brought out in the question itself and the points you brought up, Stephanie, I think we certainly all endorse them as all techniques to try to reduce your risk of infection.

Dr. Anne Schuckman:

We could probably address a few others that I thought of while you were talking, Dr. Pohar, as well. I’m curious for Linda with the Indiana if you’ve ever really had problems with recurrent infections. We routinely tell patients they can use the same catheter over and over again if they’re catheterizing, whether it’s a neobladder or a continent cutaneous diversion. But if that’s not working, then another technique is to change to single use catheters that you throw away or more routinely irrigating a neobladder. We don’t always ask patients to irrigate long term, but if infections are an issue, we may ask patients to do that.

Linda Waddell:

I haven’t had any urinary infection and I reuse the catheter. But when I first initiated that education about what to do, I use a Dial antibacterial soap and I wash the catheter and then I use hot water and then I air dry the catheter in between a towel. That is what I was told to do and I do that pretty religiously. And I always wash my hands before I do the catheterization with the antibacterial soap.

Stephanie Chisolm:

Okay, good. All right, really helpful information. Obviously, when people have bladder cancer, they’re going to continue to have a relationship with their providers and there’s a good question in here. I always wonder when I’m asked to give a urine sample, would I give it from a clean bag, but tell them it’s from a urostomy? But I’ve heard people say it’s done differently. Please explain what is best when asked to give a urine sample. Either of you.

Dr. Anne Schuckman:

I can give my two cents on that first. The thing that drives me probably the most crazy as a urologist, is when patients who have ileal conduits come in and they say, “Oh, my gosh. I’ve been on antibiotics five times since I’ve seen you last.” I say, “Well, have you been sick?” They say, “No, I’m totally fine. My doctor just keeps sending urine cultures and they keep being positive.” Many of those cultures get sent just from the bag and to me, to be very graphic, I feel like that’s the same as just sending it from the toilet water. That’s not a sterile environment. I do not treat infections based on that kind of culture. So for somebody who has a urostomy, if we really need to determine what is going on, I like to catheterize the stoma and drip a culture into a sterile cup. And really do that in a sterile fashion. Most people who aren’t urologists aren’t going to ever do that. Now, if you’re in a situation where you have a fever, or symptoms and you’re sick and your doctor needs to put you on some antibiotics and sends a culture in another way, by all means accept the treatment. But otherwise, if you’re asymptomatic, I think that trying to collect a cleaner specimen is probably more efficacious so you’re not on antibiotics unnecessarily. I’m very passionate about this, so I apologize for being so passionate about this.

Dr. Kamal Pohar:

Another practical point though is another way to possibly get a better sample is if you can change your own appliance in the physician’s office. If you have a spare with you or you bring it and you could put a clean pouch on. It’s a little time consuming to just wait. That’s another way to sometimes help the doctor out too if you’re not in a urologist’s office. Most doctors’ offices are not very adept at changing your appliance or what to do. But certainly you might be able to help that situation.

Stephanie Chisolm:

Very good points on both and I will definitely think of that in the future as far as yes, if you’re getting a sample from the bag, it’s like taking the sample from the toilet bowl and it’s going to have other issues. That was definitely something that will stick in everybody’s mind because it’s stuck in mine.

I was hospitalized two months after surgery with bacteria in my blood, resulting in a sepsis. Will I be more prone to this in the future? Is this something that you see commonly, or is this something that’s more of a rare situation?

Dr. Kamal Pohar:

Well, I think the starting point is it all evolved from the topic we’ve been having some dialogue about. It’s a urinary infection, so unfortunately a urinary infection got so severe it entered the bloodstream. Hopefully, it won’t happen again, but I think it’s important that that be investigated, are there any underlying influences of the diversion that can be corrected to preventing another severe infection. Are there any stones, is there any obstruction? Some of the points that were on a couple of the slides. I think it’s prudent to look into some investigation with fingers crossed, hope they won’t happen again. But unfortunately, there’s no guarantee. Any urinary infection there’s a potential it can lead to this sepsis in blood and bacteria in the bloodstream, unfortunately.

Stephanie Chisolm:

Thank you. Here’s another good question. Are there any available things you can do to help your excess mucus and plugs that cause difficulties with a neobladder? But just in all the diversions, are there any things that you see that work for patients in terms of diet or hydration that help to reduce problems related to the mucus that’s inherent in using your intestines for getting urine out of your body?

Dr. Anne Schuckman:

Yeah, this has come up I think all the time when we talk about this because patients always are worried that something’s wrong if there’s mucus. I guess I’d have two parts of this. One: mucus is a normal and healthy part of a urinary diversion. So seeing some mucus in the bag or in the toilet is normal. If it’s causing problems with obstruction, the first solution is hydration, hydration, hydration, hydration. The more urine you’re making, the more dilute that mucus will become and the less likely it is to cause a mucus plug. Two: if you have a neobladder and it’s really a chronic issue, you may need to catheterize periodically and irrigate out the mucus. Some patients need to do this once a week just to keep the pouch a little bit more mucus free.

Dr. Anne Schuckman:

Three: if you normally don’t have mucus and all of a sudden you’re having a huge increase in the quality of mucus, that actually can be a sign of an infection in a neobladder and so it may be worth a visit to a doctor to make sure you don’t have something like a UTI, that can be treated with simple antibiotics

Eric Notti:

Can I jump in real quick? With a neobladder, when you first have your neobladder, you do expel a lot of mucus. When you first have a neobladder you do expel a lot of mucus to start with from the neobladder. As the years go by it lessens and lessens. So anybody, a new patient that has a neobladder is probably going, “What the heck is going on? How long is this going to go on?” Now at five year mark, generally speaking, you see a light silt at the bottom of the [bowlat the most. Except for myself, if I do any kind of heavy exercise, when I go play a game of golf or something like that, I’ll have a little more shedding, but nothing like within the first year or two. It really goes away especially as Dr. Schuckman mentioned, you hydrate. You drink a lot of water, you cut back on caffeine hopefully, so that way the water will take effect and actually rinse you out.

But in my situation, now we’re rolling into what, year six, like I say, I only have just a light silt and an occasional strand or two like I say, after going and doing some hard exercise. So for new patients, yeah, it’s going to be a little upsetting. You’re wondering what’s going on. But as you get further into this, it will shed less and less and less. Or at least, that is my experience and I believe it’s the experience of most people I’ve talked to with a neobladder.

Stephanie Chisolm:

Great. We have a couple of questions that are related to parastomal hernias. I’d love to get your input as the doctors. Have you found that hernia belts can help, or is there anything that people should avoid doing in the sense of exercise, activity, or reaching? Doing anything that they should be aware of to avoid or reduce the risk of developing a parastomal hernia that you’ve seen in real life practice.

Dr. Kamal Pohar:

Yes, Dr. Schuckman’s talk had pointed out parastomal hernias, they can be common. They do occur. A hernia belt is a wonderful option. I have many patients of mine in the practice, a hernia belt or an abdominal binder to help. Whether they feel it’s disfiguration or there’s just a bulge or they have some degree of discomfort over that area. Or as the question asked, with activities they find that that becomes more bothersome. A hernia belt can certainly help fix a lot of those problems and I would certainly advocate that and encourage that. That if someone is physically active, exercising or doing other activities, a hernia belt is a very good solution. I wouldn’t suggest that it should restrict your ability to do whatever you want in life. A hernia belt, I think is a great solution and can help you achieve what you want to do. Weight gain, unfortunately, which is hard for all of us sometimes to manage our weight. But weight gain can be problematic with parastomal hernias, can exacerbate them. So trying to manage weight to the best our ability, that can certainly sometimes be helpful.

Dr. Anne Schuckman:

Not a lot else to add. I mean, we talked a bit in the talk about prophylactic techniques. We use abdominal binders routinely after surgery. We have patients wear them for several weeks. And just for patients who are suffering with a hernia, many of the supply companies do make, what’s the word I’m looking for? Individually sized precut hernia binders with a hole for the ileal conduit. Customized is the word I’m looking for. You can send in your measures and I think there’s a company called New Hope that makes those. Many patients just find they give extra support to the area certainly.

Dr. Anne Schuckman:

Most patients don’t come to having surgery for a parastomal hernia. For most patients, they live with the hernia and manage it conservatively. I think patients who we end up deciding to do surgery, it’s a big deal and patients know that and so it’s usually for patients who are really having problems with bowel obstruction related to their hernia, which can be a complication. Or they just simply can’t fit the appliance appropriately on there because of the hernia on their stoma.

Stephanie Chisolm:

This has been phenomenal. I know we’re coming up on the hour and Dr. Schuckman is still working because she’s on the West coast and the rest of us are in the middle or to the East coast. So I’m going to close tonight’s program. I want to thank you, Eric and Linda, for jumping on and being willing to share your experiences. Dr. Pohar and Dr. Schuckman, this has been fabulous and very informative. I know that people have really appreciated all the information that you shared.

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