Treatment Talk | Indiana Pouch

June 7, 2022

With Dr. Aaron Laviana and Patient Advocates Cindy and Scott.

Year: 2022

You can read the full transcript of Treatment Talks | Indiana Pouch at the bottom of this page.

Part 1: Creation, Care, and Common Issues with Indiana Pouches

Video (23 min) | Transcript (PDF)

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Part 2: The Patient Experience with an Indiana Pouch

Video (13 min) | Transcript (PDF)

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Part 3: Question and Answer about Indiana Pouch

Video (21 min) | Transcript (PDF)

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Full Transcript of Treatment Talk | Indiana Pouch

Morgan Stout: Bladder cancer will affect over 80,000 people every year of those 80,000 new diagnoses, about 25,000 people will be diagnosed with muscle invasive bladder cancer. Bladder removal is a common treatment for muscle invasive bladder cancer. And one of the diversion options after bladder removal is an Indiana Pouch sometimes called a continent cutaneous pouch. The Indiana Pouch was pioneered in 1985 at the Indiana University School of Medicine. My name is Morgan Stout and I’m the outreach and education manager at Beacon. I’m joined today by Dr. Aaron Laviana from Dell Medical School at UT Austin and our patient advocates, Scott and Cindy. Welcome. First, I will hand it over to Dr. Laviana to talk about the medical aspect of creating and caring for an Indiana Pouch. And then we’ll hear from Scott and Cindy about the lived experience. With that, I will hand it over to you, Dr. Laviana.

Dr. Aaron Laviana:

Perfect. Thank you so much, Morgan. And it’s really an honor to be here today and this evening, and thank you for taking the time to be a part of this. And so I’m just going to share my screen here with everybody. Hopefully you can see this. So we, this past weekend we had our annual American Urologic Association conference and one of the highlights of that always is what’s called the Whitmore Lecture as part of the Society of Urologic Oncology and Dr. Eila Skinner is the chair at Stanford, and she gave the talk this year. And one of the things she focused on was just the differences between conduits, Indiana Pouches and neobladders. And one of the lines that really resonated with me was she said, you can talk any patient into getting an Ileal conduit if you want them to get an Ileal conduit. And it really strikes a cord there because Indiana Pouches in particular are very underutilized. And how much of that is just with people being uncomfortable with the operation or just not having exposure to them.

And so I definitely think this is a very underutilized operation here, and the more we can give exposure to it for the right patient, I think it can really go a long way. And a lot is not tonight too, is I want the patient experience to really be emphasized for both Cindy and Scott who have both undergone this operation and can share their experiences. Because at the end of the end of the day, I think that is what is most important. And so I would just like to thank our treatment talk sponsors here as listed above. And then I want to start by just giving an overview of what an Indiana Pouch actually is.

And so this is a picture here of both the small intestine and the colon. And so the Indiana Pouch is actually a combination of the two of them. As you transition from the small intestine over to the colon, there’s something called an ileocecal valve. And that valve is what’s used in this operation to actually provide the continents mechanism or that’s what helps prevent the leakage of urine after this operation. So approximately 50 centimeters of small intestine are harvested or cut and then the rest of the bowel is sewed back together. And you can see this better in the next slide here. And so this picture on the left here, that’s labeled A, on the right part of that screen, that is the actual pouch. And you can see the Foley catheter with the balloon going into the pouch. And then that area on the farther left there is where it narrows and comes out to the skin.

Dr. Aaron Laviana:

However, it’s that’s sort of that junction there of where that ileocecal valve is that provides the continents. If you move over to B here, you can see sort of how big this pouch is. Those blue tubes are the stents coming from the ureters into the pouch and the yellow thing is the catheter that comes out to the skin. Then finally, on the right side here, this is the last picture of the Indiana Pouch. You can see the pouch on the inside, and then you can see the “stoma” on the patient’s outside that they then have to catheterize through. And so what actually is the Indian Pouch here, is it’s basically considered an artificial bladder that’s inside of your body. That one empties with a detachable catheter, typically called also known as sometimes a Foley catheter or a red rubber, or a silicone catheter. There’s many different names, or an in and out catheter, but it’s something that does not stay inside. And it helps wearing it helps avoid wearing an external urine bag and results or hopefully results in normal urinary control. And so what to expect during an Indiana Pouch, and so the urologist or team urologists, which is often the case, builds a new bladder pouch from your colon and small intestine. That pouch then connects to a piece of intestine instead of your urethra. It comes through the skin, typically it’s a dime size opening, many people do refer to it as a stoma, and then you drain, you drain urine from the pouch by catheterizing the stoma. This will change over time, but ultimately once you hit this sort of equilibrium, you catheterize every four to six hours. Most oftentimes it’s located in the right lower abdomen. And typically catheterizing is not a painful experience.

Dr. Aaron Laviana:

So what are the benefits of an Indiana Pouch versus an Ileal conduit or neobladder compared to an Ileal conduit? It ideally avoids having a urostomy bag, you have normal urinary control during the day and night. You can also, depending on your preferences, place it below the belt line and so it’s not visible such as when you’re at the beach. And then it’s also good option when the cancer has spread to the urethra and you can’t do a neobladder. In females as well, it’s sometimes a better option because anytime you get a neobladder, you have to be consulted on the need for self catheterization, which can be much more difficult with a neobladder as opposed to an Indiana Pouch. And last but not least, it does have the highest urinary control satisfaction. The ileal conduit obviously will leak continuously. Neobladders almost assuredly will leak at night, at least for the first year, and sometimes there’s problems with daytime continence as well. So in Indiana Pouch, when it goes well, definitely has the highest urinary control satisfaction.

 Now on the converse side, why don’t we just give everyone an Indiana Pouch and some of the disadvantages here are, by having this pouch, you’re never going to be able to urinate normally, the only way to evacuate your urine is to catheterize, and you’re going to have to catheterize for the rest of your life. And typically it’s every four to six hours, but that may vary. Also because of the large size of the intestines involved, in particular the colon as well, you need to rinse and irrigate out your stomach day waste since it makes mucus. Now, some of this mucus production will go down over time, but for many people, they have to continuously irrigate this Indiana Pouch for their entire life. It’s also a complex surgery as I’ll show you a few pictures and diagrams here. When you wake up after surgery, you have many tubes and drains.

Some of these can get clogged, some of these can change angles. Sometimes the catheterization can get difficult and there’s a potential for side effects. And the extra hours of doing this can take a toll on the body. So it’s not for everybody. This next slide, I just want to give you a heads up here, it does contain a picture of a surgical procedure. So if you’re uncomfortable with the site of blood or tubes, momentarily take a look away here and I’ll let you know when that slide has passed.

Dr. Aaron Laviana:

So this picture here on the right and left is a picture of a patient I performed in Indiana Pouch on several months ago. And this was in the initial postop period here. So on the top left here, this is the stoma. This is where the patient ultimately catheterized through. However, to wake up and to make sure that the Indiana Pouch is adequately draining, also placed what’s called a 24 French Malecot catheter. And that’s basically a large port catheter that goes into the Indiana Pouch and that gets removed.

Below that and the lower left side are two urinary stents, and those are draining the kidneys in ureters to divert as much of that urine as possible in the initial period. I do this operation robotically for the most part here. So he has several tiny incisions from a robotic ports. And on the right side of the screen, that drain is just draining abdominal fluid. And then as you can see on the right side of this, on the right photo here, it’s the same picture, but you can see the catheter draining where you’re going to catheterize through the stoma. And then the bottom left piece is just a bag to collect the urine in the initial postoperative period.

So what to expect after going an Indiana Pouch. So, and you can look back if you looked away there,. But so after going to Indiana Pouch, you’re going to wake up with a lot of tubes and drains that can be confusing for yourself, but also for many of the nurses and other hospital staff, as if this operation’s not done very often. People may not be used to seeing all these tubes and drains and so one of the things that’s important is that they’re all labeled appropriately and that everyone has a great understanding of what purpose each of them serve. The patients will typically recover in the hospital for about a week after surgery plus or minus based on how they’re doing with the, I always say the real bottleneck of this surgery is waiting for the patient to have a bowel movement, because you have to cut a segment of bowel, reconnected as goes with any cystectomy.

Dr. Aaron Laviana:

Sometimes you can get swelling at that staple site, and until the patients are able to pass a bowel movement, that’s typically when they’re able to go home. Now this can vary from practice to practice, but typically we keep the drains in for about three weeks and then get an x-ray something called a pouchogram to make sure the pouch is sealed and that there’s no leaks. Once there’s no leak then we can begin to take these catheters out one at a time here, sort of saving one as a safety or a pacifier. God forbid, there’s any issues with catheterizing the stoma. And then it’s also important to note that the surgery does take a toll on the patient, patients typically lose about 10 to 15 pounds during the recovery, but it takes a full almost two months for weight to stabilize, if not longer. And so it’s always important to counsel for patients before going through this operation.

About one and a half to two months in, you should be able to go back to your normal activities. It typically takes though about eight weeks since you wake up and you feel like you’ve never had an operation, which can be a substantial amount of time. And then over the next year, you can slowly wait longer and longer to empty urine as your pouch stretches in the beginning. We want you emptying that pouch every two hours, just to make sure it doesn’t stretch out too quickly, both from a leak standpoint and then just from a retention of urine standpoint. Then eventually your pouch will be able to hold as much as a normal bladder. Sort of the sweet spot here is being able to catheterize every four to six hours for residuals of about five to 600cc or milliliters of urine. As you go over that you’re at higher risk of getting bladder stones or pouch stones, which then may lead to further interventions and operations.

So how does someone with this artificial bladder know if they need to urinate? And so most people will feel abdominal tightness or mild cramps that should not be particularly painful, but they typically feel uncomfortable sort of as having a full bladder. And then some patients will see their stomach sticking out on their right side, where their pouch is located when very full, but that’s not everybody. What about needing to wear pads or an adult diaper? So if you’re undergoing a neobladder, we always counsel patients on this that they’re a high likelihood of leaking. And as I said earlier, you’re definitely going to leak at night.

Dr. Aaron Laviana:

For an Indiana Pouch however, you should be able to wear regular underwear. And most people wear a bandaid or a small pad to keep the amount of mucus that the stoma makes from getting on their underwear. Now, in the beginning phases of this though, it is common to leak urine, especially as that neobladder is expanding. And so in that case, you may wear pads, or you even may wear a conduit bag over it in the beginning until you sort of get in your routine and you’re comfortable with how you’re living your daily activities. For instance, if you know you’re going to be out and about for several hours or even longer than that, you may want more wear a more protective barrier until you sort of get used to everything, but it’s definitely person dependent there.

And what are a few other things to consider about an Indiana Pouch? Well, for starters, it’s not uncommon to have urinary tract infections. You basically have an artificial bladder made out of intestine, which can have some bacteria in it, and you’re also holding urine. And sometimes, especially the more urine you hold, the more prone you can become to infections. And when you tie the… Or sew the ureters into this pouch, you can also have reflux of urine back the ureters and into the kidneys and that can also cause infections.

It’s really important that you know how to irrigate with the Neobladder as the mucus can build up. It can not only clog the catheters, but can also lead to kidney stone formation. And you’ll have to continuously irrigate that pouch to drain the mucus and help prevent these stones. Another thing is because of a large amount of intestine, you have to take to build this, that sometimes it leads to more acid reabsorption, and you have too much acid in your blood. And as a result, you have to take something called bicarbonate or bicarb to help counteract all the acid buildup in your blood. You can also have something called vitamin B12 deficiency and some other vitamin deficiencies, so it’s important that you get your labs checked routinely as well.

Dr. Aaron Laviana:

A few other things is that leakage from the stomach may occur and the mucus may leak out. Not all these unfortunately are perfect and a lot of this comes down to the mechanism of how you sort of buttress the ileocecal valve I talked about, and that part’s very important. Some do work better than others and so for some patients will leak more than other patients. But hopefully as it matures and gets to its steady state here, the leakage is not a huge problem. You can also get stoma narrowing, so on the outside where you’re catheterizing, that area can narrow and stricture down and that can make it difficult to catheterize and empty the pouch. Sometimes that needs to be revised. Also, you can get what’s called a parastoma hernia, or it’s sort of a muscle laxity or fascial defect around there where the intestines in the Indiana Pouch actually push out against your skin. And that can change the angle for catheterizing that can make it more and more difficult.

The other thing is you have to schedule emptying of your Indiana Pouch during the night, especially in the beginning, as it goes along, I do have some patients who absolutely refuse to get up to empty their Neobladder. But you have to understand that’s putting you a little more at risk of having urinary tract infections and getting stones. Another important thing to consider is just getting a medical alert bracelet. God forbid, you ever run into trouble depending on what hospital or urgent care or freestanding emergency room you go to, many of the providers may not be familiar with Indiana Pouch. It’s not uncommon that these providers have never even seen one. And so just making them aware, especially if you get any imaging studies done from the radiologist standpoint too, that they fully understand what you had done and what your anatomy is supposed to look like.

Now, what about these adjustment phases here? So with regard to leaking, especially in the beginning, as your pouch is learning how to hold urine as it’s growing in size, it’s normal that it’s going to leak. This is normal and not something to necessarily panic over in the beginning. It should get better and oftentimes does. What about irritability? So there’s times, especially when you’re learning to catheterize here, that you’ve been on a very regular schedule, let’s say catheterizing every four hours, days, even weeks, maybe a month, and then all of a sudden, out of nowhere, you have to increase the frequency of catheterizing. Sometimes there’s more swelling around the pouch that can cause this and this is not unusual, as the pouch is learning its new function, but you also may have a mild urinary tract infection that doesn’t present with fevers and chills, but with just frequency or maybe change of odor. And in that case, antibiotics will help fix that.

Dr. Aaron Laviana:

What about difficulty passing the catheter? And so one of these things is from “trauma” of the catheterization this can actually cause swelling there, and that can be normal, it just may take more time to catheterize yourself, but it eventually will resolve. You also may feel the contours of the limb. So the limb is the piece that connects the pouch to the skin and they’re all different shapes and sizes, especially as it sort of scars in. And so you may feel that as it passes around corners. And then oftentimes when you enter the pouch, you do feel a pop and that’s the pop going through that valve, that ileocecal valve, that is the continent mechanism, but that can be alarming to patients, especially in the beginning. One of the tricks here to help facilitate or to help ease with inserting the catheter is to roll the catheter between your fingers, which may help.

Then also another thing is straining or bearing down can make it more difficult as that pressure of the intraabdominal pressure from straining can compress that limb, make it difficult to pass the catheter. So in that case, it’s always a good idea to try to relax your abdomen and your core as much as possible to place that catheter. And then also in the beginning, waters soluble lubricants, such as KY jelly, Surgilube can help pass the catheter. Your limb and the pouch are natural lubricants, so often with time, you don’t even need a lubrication, but the key here don’t use Vaseline as that can plug that can plug the catheter.

And what about for other troubleshooting? So it’s not unusual to see flecks of blood in the urine, and this is normal. You also may see it on any pads you’re using to cover your stoma. It can sometimes get irritated and scraped from the catheter. And then what about failure to adequately empty the pouch? This can lead to some frustration and unfortunately it can be normal. You may… Not every pouch is a perfect sphere, and you may have little segments of small pouch components that you have to maneuver the catheter around to different areas, to fully drain that Indiana Pouch. And some of that improves with different positions, some do better with standing, some sitting, some hunched over, but the patient sort of gets to know that with time. And then gentle pressure on the area of that pouch may also help.

And then what about thick mucus? So you may notice the change in the consistency of your mucus. One of the most common causes of this is just from not drinking enough fluids. And so patients will know the difference in their mucus thinning by the more water they drink, just they loop the mucus. And so it’s recommended drink 8 to 10 glasses of water or fluids in total per day. I have some patients who drink upwards of 15 plus of fluids. If you’re going to go super high, it’s just good to check your labs and make sure all of your electrolytes are intact. But for most of those patients, it’s not an issue. And then leaking at night can also occur. And one of the main culprits there is just drinking up until bedtime. So any diuretics such as coffee or alcohol will increase urine production, especially at night, and then not cutting off fluids or having fluids right before you go to bed will obviously make more urine at night and that can lead the problems also.

Dr. Aaron Laviana:

And then what about irrigation of an Indiana Pouch? I just wanted to go over this because I think it’s important how to actually irrigate and the purpose of irrigating is to… For starters, minimize that mucus building up and getting that out of it. And as we talked about helps prevent stone formation and also prevents infection. Now, this is typically done one to two times per day, but if you’re one who has more mucus, some patients are doing this more than twice a day. So what are the steps here? So the irrigation steps in general are first, just gather all the equipment and make sure you have everything ready to irrigate, wash your hands thoroughly, and then cleanse the end of the catheter with at least 70% alcohol, and then rinse it off with warm water and shake off any excess. You can lubricate the catheter if you’re not using pre lubricated catheters, but over time, this often is not needed as your channel’s naturally lubricated and then insert the catheter into the stoma and advance until there’s a return of urine.

If the catheter isn’t draining well, or if there’s nothing back, remove the catheter and run it under hot water to remove any potential mucus plugs and then reinsert. And then with a Toomey, it’s also known as a catheter tip or and Piston Syringe, draw up 60cc of saline and instill into the pouch. You can buy the saline or some people actually make their own saline, and then let the fluid drain by gravity. After the drainage just stopped, you always want to rotate the catheter about a quarter of the way turn and withdraw it and then push it back in and this helps you get some of these other pouches that may have been missed with the initial catheter because you basically want to just sweep the entire pouch at least twice to try to drain all that excess urine. And then you can remove the catheter.

Typically, patients like folded catheter on the way out, and that’s just to prevent it from leaking and splashing all over. Some patients do reuse the catheters. Many have those one time disposable use catheters, but some who do reuse it, they actually migrate the catheters once per week, however one at a time so that they’re not melting all together. And that’s about it for the overview now, and now I just wanted Scott and Cindy to sort of share their experiences and sort of keep this as an Q and A session here, just to chime in and we can answer any questions about this. And if anyone’s exploring an Indiana Pouches or on the fence about it, happy to answer any of those questions also.

Morgan Stout:

Perfect. I see some of our long time owners of the Indiana Pouch are already putting some questions in. So I know we’re going to have a great conversation later, but until then we’ll ask our patient advocates about their experience. We’ll start with Cindy and then we will ask Scott about his experience. So Cindy, what is it like to go through that surgery and to be on the other side and what’s it like to live daily with an Indiana Pouch?

Cindy B.:

Well, from all the trouble I had with my bladder beforehand, it’s heavenly to have the Indiana Pouch. I had had so many bladder surgeries up till when I got this and I got the Indiana Pouch in 2007. And so this was like an answer to a prayer for me. It was hard, I will say the one thing I was not aware of was the fact that they took that valve and used that for my bladder, nobody told me that. So I ended up with diarrhea for years until some GI guy said, oh, I know what your problem is, you don’t have that. Let’s put you on a medication for that and then it’s worked fine since then, so that was a nice relief.

Cindy B.:

I don’t actually have the catheter. I mean, I don’t have to irrigate much anymore because, probably because I’ve had it so long and the mucus is actually thin enough that it comes through the catheter, it just blows right out. What else… Let’s see, I did have a parastomal hernia and they had to go in and remove that hernia. In the process they put mesh in and that was done in, that was probably three… No, that was in 2008, so it was a year later. So I had that until two, three years ago I think is when I ended up, hold on… I can tell you for sure.

Cindy B.:

I ended up going back into, it was all done originally in Houston with Dr. Timothy Boone and then he stepped back from practicing. So I ended up back in San Antonio with Dr. Stephen Kraus. So about three years ago, I had such bad infection from the mesh that they had to go in and move it from the right side to the left side. So that was kind of new for them because he said, well, I don’t know. I’ve never moved anybody’s from the right to the left. I don’t know if it’s going to work. It works great, it’s just funny because I was used to catheterizing over here now I’m catheterizing over there, but it works great. I don’t get many infections, at least I’m not aware of any. I don’t have any feeling to tell me when it needs to be emptied. When it was on the right side, I would have pressure on a scar that was in my stomach from a stomach tube that Dr. Boone had put in and left in so long.

Cindy B.:

I’d have pressure there and that would hurt. But now with it on the left side, I have no idea. So I just make sure I go every four to six hours. One nice thing I will say about it is if we’re going to go somewhere, I will tell my husband, wait a minute, I’m going to go buy myself six hours and I’ll just go to the bathroom catheterized before we leave the house. So I’ve bought myself six more hours, but at night I go to bed usually about midnight, I get up at six in the morning, catheterized. Sometimes I’ll sleep a little bit later, but it’s when I haven’t had a whole lot to drink the night before and so I know that it’s going to hold it and I can go sometimes eight hours. Other than that, I can’t… I mean, there are times where it gets difficult to put the catheter in, but then I just sit back and tell myself to relax and get everything relaxed and then it passes in very easily. I do have another hernia over by this one now, but it’s not causing me any trouble. So we aren’t doing anything about it. I’ve helped a couple other patients. I’ve had people that Dr. Kraus and Dr. Boone both asked me if I would help be an advocate for patients that were going to have one and talk to them. So I even went down to Corpus Christi one time to meet a lady that was going to have one and we still contact each other.

Morgan Stout:

Well, thank you Cindy. And that’s so great and it’s great that you made a friend out of this as well.

Cindy B.:

It is.

Morgan Stout:

Scott, do you want to tell us a little bit about your experience, what it was like to go through that surgery and what your daily life is like now that you have an Indian Pouch?

Scott R.:

Certainly. My history was I’d actually had prostate cancer, high grade noninvasive over eight years ago with a robotic surgery done at UCLA. I did have a slight involvement with my urethra. So three years later I did develop bladder cancer, again, high grade non-invasive. My options were limited for a neobladder, the possibility was there, but I was recommended that for potential for me to really be almost cancer free for the rest of my life, the Indiana Pouch was going to be the best option where the neobladder, because of the minor involvement of my urethra was that it could come back and they do their best to get it out. So I didn’t really give it much thought. And when you’re dealing with the types of physicians I was dealing with, I put them in… They were part of the major decision. So that’s why I ended up with an Indiana Pouch.

Scott R.:

I’m five years last March, and other than two revisions, one under general and a minor one just to get rid of some scar tissue around my stoma, I’ve been pretty incident free. Scans show no evidence of recurrence or anything like that. Prior to surgery, I was in very good shape, I ski, I play tennis, I work out so, and that’s one thing I always stress to people when BCAN has me talked to somebody, is get in as good as shape before your surgery as possible. Exercise wise, nutritionally, emotionally and it really makes a big difference. I found that my patch for the first year, maybe not quite year, six months, I was probably catheterizing every two hours, maybe three hours at night, depending on if I drank fluids much after 7:30.

Scott R.:

And I did wear some depends for a month or two and slept on a tux or chucks, I guess they call them at night for the first few months. Now after five years, and it would be a good question for Dr. Laviana to respond to, whether or not I can experience any more expansion. I’m now catheterizing because I’m very active exercising during the day and drinking fluids three hours. Last night, I slept six hours uninterrupted before I had to get up at six o’clock in the morning to catheterize. I feel not pain, but discomfort when it’s time to catheterize. UTI wise, maybe once, twice a year, I may have to go on some particular antibiotic, but you know, if you go get a urine analysis, you’re going to show that you got an infection, but normally I don’t even need an RX to clear that up.

Scott R.:

The irrigation that Dr. Laviana talked about is very important. If I know if I go about two or three days without irrigating, my mucus, even after five years, will increase. But if I’m irrigating every day, I seldom see much mucus at all. So I think that’s really, really important. I use a red coude 14 French catheter, which works really well for me. Coude as a little bend in the tip makes it very easy. And I also find removing the catheter too quickly, usually does lead pockets of urine. So I try to be slow and I also move a little bit side to side to try to get those pockets taken care of. There’s a certain product you’ll find that you use if you’re very active, I happen to use one product that’s a stoma cover that can contain over 25cc of leakage. And I do get leakage occasionally, if I’ve been drinking a lot of liquids, particularly water, I don’t drink alcohol. I don’t smoke cigarettes and I’ve always been on a very healthy diet, but again you’re going to catheterize based upon how much fluid you intake, especially at late at night I wouldn’t recommend that.

Scott R.:

If you have any specific questions, all I can tell you, my experience really hasn’t changed my lifestyle at all. Five weeks out of the hospital, I was skiing top to bottom at Mammoth, Black Diamond, maybe, but mostly good intermediate runs and I felt fine. I went back to my normal activities. I do carry my packages with me in car, package being a lubricant, a stoma cover and my catheter, I’ve got three or four packages in my car and I always have one with me when I’m going out at night because you just want to be comfortable and be confident that, hey, I can deal with this very quickly and so on. So, maybe I’m not the norm, I don’t know, but it hasn’t been a bad experience and lifestyle wise, it hasn’t made too much of an impact on how I go through my day to day activities. If there’s anything else I can add, I’m happy to answer any questions, but don’t be afraid just get into shape, get nutritionally responsive or responsible. And you know, most people I think will come through this very well.

Cindy B.:

Can I add a couple things, Morgan?

Morgan Stout:

Of course.

Cindy B.:

I was just thinking one thing that Dr. Laviana caught for me that no other urologist has was that I had a vitamin B12 deficiency. So I was clueless. I mean, I didn’t… I just thought I was getting old and didn’t want to do anything, I guess. I don’t know, but he caught that for me so I was very thankful for that. I too do take catheters and everything with me everywhere I go, but keep a sense of humor. And the reason I’m going to say that is because sometimes now, my daughters now that they’re older, they’ll if they… If we’re out somewhere together, they’ll come in and if it’s just them, they’ll say, mom, I can tell what stall you’re in and I’ll say why? They’ll say, because you’re facing the toilet and I’ll say, oh yeah, I know. You know, but it’s become a thing with us to keep things on the light side. That yeah, there are differences and there are things that you can make it happy, don’t make it sad. So…

Morgan Stout:

Thank you both so much. And we did have a question and if you’re not comfortable answering it, Cindy and Scott, you don’t have to, but it’s a general question Dr. Laviana: what are the average age ranges that you can see for patients and Cindy and Scott what ages were you when you got your Indiana Pouches created?

Cindy B.:

I have to do some math with this one. I was in my fifties, but I started having bladder problems when I was in my forties. By the time I had the Indiana Pouch, I had already had eight major bladder surgeries, which just messed up my bladder to where it was no good anymore.

Scott R.:

I was 69. I’m 74 now or 68, I guess when I had the surgery and my activity level hasn’t changed much. In fact, basically I’m just… I’m just voiding differently than I did before so that’s how I look at it.

Morgan Stout:

And Dr. Laviana, from that medical perspective, what would you say the average age is or is there like an ideal age range for patients to get an Indiana Pouch?

Dr. Aaron Laviana:

Yeah, that’s a great question. And Cindy and Scott, thank you so much for your candid answers here. I think that just provides so much insight. There is no age range, I don’t look at any patient just by age alone. As Scott was alluding to, a lot of it is how healthy are you at this phase of your life? If you’re active, you can walk without difficulty, if you have good control of your hands, I think that is far and away the most important thing. And if your mental status is normal and strong, then I don’t think age matters as much as your overall fitness. But I would say you have to have great hand control just to be able to catheterize, unless there’s someone who’s going to do that for you. It’s just a large burden to place on somebody else. And so I really like feeling confident that I think you can do that. And for the majority of people that’s definitely possible.

Morgan Stout:

Absolutely.

Cindy B.:

All my family members knew how to irrigate it in case something ever happened and how to do it. I mean, they could have taken care of me if they had to. And by the way, my math is horrible. I was 66.

Morgan Stout:

There was another really great question along that same line about having other people help you with that. What would a good thing to tell people briefly, either on a medical alert bracelet, or just if you’re in an emergent situation that would quickly and easily convey that you have an Indiana Pouch?

Cindy B.:

I have medic alerts, so it’s all on that for me. And like I said, both of my daughters and son-in-laws, and my husband all know about it. So they would fill anybody in any way.

Dr. Aaron Laviana:

What about you, Scott?

Scott R.:

I really hadn’t given it any thought. I mean, it’s become such a natural process for me and in my mind, I’m still younger than you. So I don’t think about it, but now that I am… Now that I’ve heard this, maybe I should wear an alert. I am diabetic, well controlled and you know, it wouldn’t hurt to have something immediate information should something happen that makes me unable to communicate. So yeah, I don’t know the best way to go about providing that a bracelet or something else. I don’t… I have to look into it, I guess.

Morgan Stout:

Dr. Laviana, is there something that you would see on a medical alert bracelet that would tell you exactly what you needed to know about somebody who had an Indiana Pouch?

Dr. Aaron Laviana:

So I’ve seen patients who literally have it say Indiana Pouch on there. I mean, God forbid you get found down or there’s a skiing accident or something, Scott. It’s that way somebody knows if you go to just the first emergency room there, they’re going to look and really be confused as to how to proceed. And so it’s just as simple as saying, Indiana Pouch can really go a long way.

Morgan Stout:

Thank you.

Scott R.:

Interesting regarding Indiana Pouch. So I’m playing some physicians really aren’t even familiar with it. I kind of had to explain the procedure to one of my primary care doctors. And just what I’ve heard of it, but it’s that like a neobladder? And I guess there are differences that they need to be aware of.

Morgan Stout:

It would seem that simple phrase of just Indiana Pouch gives the provider enough information to either do a very quick Google search or they’ll know what it is. So I hope that answers your question. Speaking of primary care providers, we had a really good question about should primary care providers or a urologist do your annual/semi-annual urine check or what the importance is in communicating that with your healthcare provider about what needs checked in the urine?

Cindy B.:

Before I had Dr. Laviana, Dr. Kraus would send the orders to me and I would take them to my primary care and he would run the test and then I would get the results and I’d send them back to Dr. Kraus down in San Antonio. Now I let Dr. Laviana do it.

Morgan Stout:

Dr. Laviana, do you think it’s important for the urologist to do it as opposed to the primary care person?

Dr. Aaron Laviana:

I don’t think that’s black and white. There’s no black and white answer here. I think it really depends on the patient’s relationship, both with the urologist and primary care provider, if they have a great primary care who they trust and communicate the labs back and forth, I think that’s fine. One thing to worry about over time, same with the neobladder as an Indiana Pouch is that because you take so much intestine, you can get acidotic or increase acid load and you can have sort of kidney function deterioration with time. And so someone has to be vigilantly following your labs at least annually, to make sure your kidney function is good. And then as Cindy said earlier too, you can definitely get vitamin B12 deficiency, which isn’t always checked. And so you have to be aware of that. And then I typically start a year out, you can probably wait a little longer, but again, because you’re harvesting small intestine, as well as colon, it’s interacting with urine, you have to start checking urine cytologies, which is a urine test, just to rule out a secondary cancer that can form in people who have had these pouches for 10, 20 years here. So it’s something to keep in mind.

Morgan Stout:

Right. Scott, what is your experience with having your urine checked?

Scott R.:

Well, you’re always going to show an elevated white count because you’re catheterizing to give the sample. So a primary care who say, you didn’t know you had an Indiana Pouch would say, oh, we better start on Cipro, do a urine culture, which I get once or twice a year, but I think it can be over-prescribed antibiotics when just drinking a lot of fluids irrigating and washing it out. I mean, when you get up to a white count in the way up there, yeah, you probably need some type of antibiotics, but right now I had an urinalysis done for a minor surgery I’m having, and it was like a hundred, which was potentially, I guess, I don’t know, five to 10 times abnormal. And I think a normal general practitioner would’ve started you on antibiotics where I didn’t have any symptoms and my infectious disease doctor, as well as my urologist says, if you’re not having symptoms, let’s not start you on antibiotics. So I think it’s something that needs to be… People need to be aware of you just because you have elevated white counts and so on doesn’t necessarily mean you need to jump on antibiotics.

Morgan Stout:

Absolutely. And we had a couple of very related questions submitted and they’re about long-term ownership. One is about an overly stretched pouch, and one is about continual leakage. So we’ll start with one and then we’ll move to the other. And the first is, can a pouch become stretched out and floppy over time and more difficult to empty as time progresses?

Dr. Aaron Laviana:

Yes. The short answer is that yes, it can definitely get too enlarged and I’ve seen these as large, definitely as large as a liter, if not 1500cc. And in that case, it’s not a perfect sphere to start as a circle, but then the lobulations and the shapes kind of get all over the place there and it can get much more difficult to empty. And that’s when you really get at risk of urinary tract infections, as well as stones. The problem with getting a stone in these Indian Pouches is it’s not as straightforward in operation all the time as opposed to getting kidney stones the old fashion way. So it’s something to keep an eye out. Scott, you’re saying you’re catheterizing every three hours and can you expand? And I would say ideally, yes. The answer to that is you can expand where that sweet spot is really four to 600cc of urine, but oftentimes you, especially with having it for so long, you can’t expand rapidly and this will be something you have to expand 5%, 10% of the time and see how you do and go from there.

Scott R.:

Three to six hours doctor. So during the day I’m drinking so much fluids, alkaline water system in my house, exercising, walking. So three hours, but at night I’ll get up to six hours of uninterrupted sleep. So…

Dr. Aaron Laviana:

Yeah.

Scott R.:

But you’re saying after five years, the potential for the pouch to still be able to expand more is a possibility?

Dr. Aaron Laviana:

Yes.

Morgan Stout:

That’s good to know both that it can continue to expand, but B that it also may get a little bit floppy and difficult to release that urine. Is there any sort of fix for that floppiness?

Dr. Aaron Laviana:

Unfortunately not really without an absolutely major operation that oftentimes is not worth undergoing. There’s no easy fix to that.

Morgan Stout:

I’m sorry to hear that, but we’ll cross our fingers for future fixes. The other question related to longtime owners is about leakage. And what about when people experience leakage past that normal thing beyond the normal leakiness? Is there tips tricks, Scott, Cindy, Dr. Laviana, what do you think?

Dr. Aaron Laviana:

One of the more common problems actually with Indiana Pouches is the leakage issue that can persist. You have that valve, but then you have to throw some sutures around there to try to really narrow it down. But unfortunately, it’s not a always perfect mechanism and some people do unfortunately leak and leak. Now, if it’s the point that you’re putting a stoma bag over it or something to that extreme and is not better, then you can go in and revise these to improve upon that continent’s mechanism. But one of the tricks here is to catheterize more frequently. I do see one of the comments here about catheterizing up to seven times daily. And if you’re still leaking at that, and that’s going to be every three hours or so, I mean, you can try even every two hours, especially if you’re going to go out and do an activity and you don’t want to leak during the activity is catheterizing right before and afterward. But if it’s really, really uncomfortable or affecting your quality of life, I would seek a possible revision there.

Scott R.:

I had two revisions myself. One was under general and because of leakage, they repositioned my stoma, which is probably about four inches below my navel, so it’s way down low. And that pretty much took care of a lot of my leakage. And then the second one was done just under local, where I developed scar tissue at the opening of the stoma. And my doctor was able to clean that up and now I’m catheterizing like a hot knife through butter. So it’s been fine, but it’s not unusual, I guess, as Dr. Laviana said not to that revisions are possible and they do help me out greatly. And that was in the first year and a half or two since then, I’ve had no need for anything like that.

Cindy B.:

I wear a little pad that I make up over the stoma just to keep it because of the mucus and it does leak somewhat, but it doesn’t bother me. You know, I take it with me. I take a new one. If I need to, I take my tape, because I’m allergic to so many kinds of tape. I have to be careful what I use, but I haven’t had any problem with the amount of leakage or anything that I can think of it all. And I had that one revision when it was on the right side, then we had the big one moving it to the left.

Scott R.:

I will mention an amazing product that I researched and researched. And I’ve been doing it for almost five years. It’s called a stoma cover but this particular stoma cover I’ve found a company in actually Austin Medical Products that makes it, I’m not… I don’t own their stock or anything, but they’re just a cover and that’ll hold between 25 and 28cc of leakage. And it’ll start to balloon up when, you know it’s filling up, even before the pain. But again, it’s very useful in an active lifestyle. It’s called the SG3, they make a number of different ones. It’s just a flat little pad, but with great sticking capability, doesn’t irritate the skin and Medicare pays for it by the way. So it’s a super product and I haven’t found anything from any other manufacturer that comes close to it, even other manufacturers have recommended it when I was looking for something else.

Morgan Stout:

Thank you all so much for that helpful information about leakage. Now we’re going to talk a little bit about mucus. We had several questions come in about mucus and the first, and I believe in your presentation, Dr. Laviana, you talked about how they take part of the bowel, and just because you take part of the bowel, doesn’t mean that your bowel stops functioning as a bowel, even though it’s now doing a new job of holding urine. So can you talk a little bit about how that peristalsis or the squeezing and expanding motion of the new pouch and stoma can sometimes expel mucus or urine and how that can be dealt with?

Dr. Aaron Laviana:

Yeah, there are actually several of these questions line up pretty well here. So peristalsis is just the squeezing of the intestines to push things for forward. It’s how your bowel movements basically go from your stomach all the way down to the toilet, but you still have that motion of pushing forward. And for some people that actually can make catheterizing more difficult. When you’re catheterizing and the intestines are squeezing out, it can cause some pressure for that catheter. And it’s also some of the concern of actually putting this on the left side and not the right side, even though Cindy you’ve done great with that. That’s always a theoretical concern is that it’s going the opposite direction there, but also with that, because it is squeezing, you can’t have small amounts of mucus and urine sort of push out there.

Dr. Aaron Laviana:

But a lot of that has to do with the overall continence mechanism of that valve and how it sutured down below, if it’s really in… So a couple things, if you have too much mucus, one of them is to really drink more fluid, to try to dilute some of that, to help that out, and when you’re irrigating, if you’re just doing irrigating with 60 milliliters of saline, you can increase that to 120 or even 180 to try to get that out. When you’re irrigating, there’s a comment made here about guaifenesin to thin mucus, and that actually works the same way it does for your sinuses. And I have several patients who do use that to thin that mucus out as well and it does work. These patients have done it for years and it works fine. It can make you tired and you just have to watch out for formulations that you can function well on, but that does help from a urinary or from a mucus standpoint as well. And so if it works for you, I say, great, I don’t discourage anyone from that. And there’s also a comment here on that line about being a dairy user and take more when the usage is up, there’s not a real link between dairy and mucus production, per se. I think it’s more with a hydration standpoint, but as Cindy and Scott said that their mucus production did both decrease over time. And I find that to be more of the norm, is that over time, you still make some mucus, but it tends to go away. If not, then usually it’s having to just irrigate more when you are doing that catheterization.

Morgan Stout:

Great. Thank you. And another diet-related question about eating fiber to increase mucus or the correlation between fiber and mucus, is that something that Indiana Pouch users and owners need to worry about?

Dr. Aaron Laviana:

The short answer there is no. I mean, fiber just overall has so many great benefits, just from regulatory gut function in general, it’ll make things move more. And then from an overall constipation standpoint and straining standpoint, you want your stools moving pretty freely. So I think that’s a bigger, long-term issue than the sort of byproduct of making more mucus and it’s not substantial in that regard either. So I would never tell someone to stop their fiber intake for that reason.

Morgan Stout:

Great. Thank you. We have one more question and then we have time to do a little bit of a final thought. So the final question is there a way to stretch a tight stoma or tips and tricks to navigate a tight stoma?

Dr. Aaron Laviana:

It’s a common issue here and Scott said he had something along those lines. And part of the problem is you’re taking this piece of intestine and bringing it up to the skin. And that’s the farthest area from the blood supply to that piece of intestine. And so oftentimes that area will stricture down because it doesn’t have a good blood supply and that can narrow and make it tight. You know, no one should ever be really struggling to have to catheterize. You also want to rule out a Parastomal hernia or something else that’s causing this difficulty, or just a really tight angle. Sometimes the way these are positioned, you end up having almost an L or S shape you have to navigate through. If it’s at the skin, it’s actually… There are many options to revise those and they can be done pretty easily. Sometimes it is just dilation that can even be done in the office or a minor outpatient procedure to basically revise or redo that opening. But it just really depends where the source of the problem is, is it at the skin, is it from a hernia, is it deeper down on the angulation or is it somewhere else? But all of those are fixable.

Morgan Stout:

Great. Thank you. And my final question and kind of a wrap-up is Scott, Cindy and Dr. Laviana, what is your one tip for people that are considering getting an Indiana Pouch or what’s the one thing you want people to know? Scott, do you want to start?

Scott R.:

I think a positive outlook on the surgery. Being positive well before your surgery and getting in physical shape, physically, nutritionally and emotionally. People say there’s support groups and things like that, it’s not that much different than anything else that I’ve had to do. I’m voiding a little differently, but other than that, it hasn’t affected my lifestyle that much. And in all, thank God I got it taken care of and I wouldn’t change anything or I would, I wouldn’t have to have cancer, but other than that, it’s all good for me. And I’m positive about my experience.

Morgan Stout:

Great. Cindy, what would you tell… What’s the one thing you would tell somebody?

Cindy B.:

I agree with that, but I would also say go into it with knowledge, do your own little homework to figure out if this is for you, but don’t be afraid of it because it really changes your life for the better. I would say that it does not change your life for the worse. It changes it for the better, and you got to have a happy attitude. You got to keep a positive attitude and keep God on your side. You got it made. Good doctor. It’s good.

Morgan Stout:

Great, Dr. Laviana, What’s the one thing you would say?

Dr. Aaron Laviana:

Go somewhere with experience where they do these cases. They understand the ins and outs. Don’t expect just 800% smooth ride that you’re going to get this done and it’s going to be gravy and there’s going to be no complications or no issues. I mean, both our panelist here had to undergo some revisions and changes and that’s… I would almost say is more normal than not, but just understanding that things will happen along the way. You can’t predict them, but there’s solutions to all of it to get a great outcome. And if you can roll with that and then understanding, you’re going to have to catheterize the rest of your life and having a great concept of what that actually entails. I do find sometimes that not everyone grasps that fully. And so I like to have patients basically even catheterized before, just so they understand what the actual motion is and what it is, even though it’s different in your abdomen versus elsewhere. But just to kind of get a sense of, okay, this something I can do.

Morgan Stout:

Absolutely. I want to thank everybody so much for their time. Have a great night!