Hello. My name is Katie Mann and I'm the nurse practitioner with the urology group at the University of Kansas health system, and today I present to you Stoma Bootcamp. And what we will be discussing will be what to expect before, during and after surgery.
Now, some things we'll talk about will be what is a urostomy, the steps of the cystectomy and ileal conduit surgery, and what to expect after surgery, like how long you will be in the hospital, what drains you may have, when will you get to eat again, pain control, your expectations for activity, as well as any new medications that you may be on.
Now, what is an ileal conduit? What this is is a urinary diversion which results in the creation of a urostomy. This is a surgically created opening for urine elimination. What we do is we use a small portion of the small intestine, usually about 10 to 15 centimeters, and we use that to create the stoma, usually on the right side. Now stomas vary in size, they protrude usually about an inch or less, they can be round or oval in shape, pink or red in color, and they look a little bit like a rosebud as you can see below. And there's no sensation to it so if it accidentally gets touched or bumped, you should not have pain.
Now, some things to consider before you have surgery. I think it's very important to think about whether or not you're set up for success before you go into the hospital and have the surgery. So you want to make sure that you're not having to go up and down stairs too frequently to go to the bathroom or get to the kitchen. So if you can set up a little area that's close to the bathroom and kitchen, that would be ideal.
I think it's also important to think about, is there someone available to help you once you go home? You're going to need help with getting to appointments, going to the grocery store, meal preparation potentially, so I think it's important to set that up prior to coming in.
Now, one thing I suggest to anyone that is intending to go home after surgery is getting home health set up, and we can do that for you while you're in the hospital. Now, what this entails is having a nurse come out to your house one to two times a week and they provide wound care, education about new medications you may be on, and assist with pouch changes. They should continue to educate you about how to change the pouch and this is important that you are very involved in this process because you want to be independent with pouch changes prior to them discharging you from home health. We can also set up physical therapy for you. They usually come out one to two times a week if you need this.
Now, in some cases, patients want to go to a skilled nursing facility and sometimes that is due to lack of assistance they may have at home, they may need additional therapy so that they can be independent after they go to the skilled facility. Now, they must complete one to two hours of therapy per day and you have to have a skilled need, which having this surgery does count as the skilled need because you have a new stoma and you will need to do pouch changes. We have to get insurance approval and we will work on that while you're in the hospital, if this is an option that you are interested in. But I do suggest if this is something that you are interested in, that you start looking at options prior to surgery and what this may mean is maybe touring a facility that you're interested in or talking to friends or family members that may have been in a skilled facility that they may be able to recommend a place that they've already been.
Now, when you come in for surgery, you will have general anesthesia. You will be asleep for approximately four to six hours, it's about average of how long it takes to have this surgery. We will remove your bladder. Now, for some individuals that have this surgery, it may not be for cancer so they may only be taking out your bladder, but if it is for cancer, we call this a radical cystectomy. And for men, we will take out the prostate and surrounding lymph nodes. For women, you may have your uterus, ovaries, a portion of the vagina that may be removed, as well as the lymph nodes. We do take that 10 to 15 centimeters of small intestine, and that's what we use to make the conduit, we sew up one end of that portion that we removed and then we bring the other end that's open to the surface of the abdomen to create the stoma. The ureters, which are the tubes that drain urine from your kidneys down into the bladder typically, we will take those tubes and we'll reimplant those into the conduit so that the urine will drain through the conduit. You will go from the operating room to the recovery room where there will be an anesthesiologist that will make sure your pain is controlled, your vital signs are stable and you're ready to go to the urology unit where you will be staying.
Now, occasionally, if you require more monitoring than what they can provide at the urology unit, some individuals may go to the intensive care unit to spend a night or two for closer monitoring. There, the nurses take care of one to two patients at a time. Whereas on the urology floor, the nurse may have four to five, so you really do have closer monitoring there.
Now, once they feel like you are doing well from a standpoint and can transfer out of the intensive care unit, you will go to the urology unit. It's nothing to worry about if you do end up going to the intensive care unit. Like I said, it's usually just for that closer monitoring.
People typically stay in the hospital about four to five days after surgery. You will have a drain called the Jackson-Pratt drain, or JP drain, and you can see the picture off to the right. It looks like a football or a hand grenade. The nurse will care for this while you're in the hospital and it's usually removed the day that you leave the hospital. You will also have a pouch over your urostomy that will cover two stents that will be coming out of your stoma. As you can see below, these tiny tubes are coming out of the stoma and they will be draining urine. They go through the conduit, through the ureters and up into the kidneys. Now, when they plug the ureters into the conduit, if we did not put those stents in, your body would create scar tissue and it would make it difficult for urine to drain out of your ureters through your conduit, so we place these and they will stay in for a couple of weeks after surgery. We will remove them at your followup appointment. This does not hurt. It usually just feels weird is what people tell me.
While the stents are in place, your urine may alternate from a yellow color to pink or even red. This will fluctuate while the stents are in place, but your urine should return back to a regular color after they are removed.
You may notice that mucus comes out of your conduit. Your conduit is made out of small intestine, which makes mucus, and it will continue to make mucus. It may lessen with time, but there will always be some amount of mucus in your urine after you have your conduit. Also, some individuals known as a stronger urine odor. This may be due to food or drink items that you consume, but it does not necessarily mean that you have an infection and this can be normal Some men, and even women, may have a pelvic drain. This looks a lot like a urinary catheter. We use this to help control bleeding in the area in which we did the surgery. It's usually removed within 24 to 48 hours after surgery.
Women will have vaginal packing. This is a packing that's made out of or has estrogen impregnated in the gauze, and we use this to help control bleeding in the area we did surgery. This is usually removed the morning after your surgery.
For most individuals, their bowels will begin working after one to two days after surgery. Occasionally for some individuals, it takes a little bit longer. The problem with this is that your stomach continues to make fluid, which is usually about one to two liters per day. If that's not going through, then it will just build in your stomach and it typically makes people extremely nauseated and even throw up, and this is not comfortable after you had a big surgery. So we will place something called a nasogastric tube. We put the tube in your nose and we thread it down into your stomach and then hook that up to suction. This really makes people feel quite a bit better after that fluid is removed. We'll leave that in place until your bowels begin working again, which is usually a day or two after that.
Pain control is important after your surgery. Your physician may decide to have anesthesia placed what's called a TAP block, which is where they will inject numbing medication around the anterior wall of the abdomen to block the nerves. Now, anesthesia will do this either before, during, or after surgery. It lasts about 18 to 24 hours. The benefit of this is that you don't have to be hooked up to any extra pumps or have any other catheters. They just put it in and it works.
Now, sometimes physicians may feel that an epidural is more appropriate. Anesthesia will place this before, during or after surgery. There is a catheter that's placed in your back and there's a continuous infusion of numbing medication and also, you are able to give yourselves additional boluses, what we call, if you're having additional pain. This is usually in place for one to three days after surgery, but it does require having the catheter in your back and it's hooked up to an IV pump. This can sometimes hinder mobility, but the benefit is that it's usually a non-narcotic medication that's infused so it does not slow down your bowels and cause constipation.
Now, if we're having a difficult time getting your pain controlled or perhaps you're not able to take oral pain medication, we may prescribe something called a PCA, or a patient controlled analgesia. We hook your IV up to an IV pump that delivers narcotic pain medication to you, you are able to hit the button when you have and it delivers a small amount of medication. Now, the benefit of this is that you are more in control of your pain and you get smaller amounts of medication so you may not take in as much of the narcotics as if your nurse is giving you medication because they typically give you a larger amount each time. The drawback is that narcotics will slow down your bowels and lead to more constipation.
Now, everyone will get some form of IV narcotic while they are in the hospital and usually around the time of surgery. We will transition you to oral pain medication when you're tolerating your fluids and food. Now, some examples of IV narcotics that we may give, they include fentanyl, morphine or even hydromorphone. We will transition you over to oxycodone, though sometimes individuals are not able to tolerate that and we may decide to use hydrocodone or even Tramadol. We usually use non-narcotic medications such as Tylenol and if you are a candidate, we will use something called Toradol, which is like an IV ibuprofen, but it really depends on how well your kidneys are functioning after surgery. We need for your pain to be under good control so that you're able to get up and walk around and meet your activity goals.
The night after surgery, you will go up to your room and if you're able to, we do encourage you to walk at least one time and perhaps even get up into the chair. Now, if you get back to your room late into the evening, this may not be a possibility, but if you are able to, we do encourage it. We will allow you to have a small amount of ice chips at that time.
Now, the day after surgery, what we call postop day one, we expect you to try to get up and walk at least three times and get up into the chair during the day. Dr. Taylor will let you have unlimited clear liquids, though I do encourage you to avoid carbonation. Now, the other surgeons will have you take in eight ounces of fluid every eight hours, which is usually water or ice. We will be giving you IV fluids so this will meet your nutritional requirements, but we don't want to give you too much fluid in your system before your bowels have woken up.
On postop day two, we encourage you to walk at least five times during the day and sit in the chair the majority of the day. Dr. Taylor will allow you to have full liquids and the other surgeons will allow you to have unlimited clear liquids at this time. On postop day three and day four, as long as your bowels are moving and you are comfortable and you are not nauseated, all surgeons will allow you to have a regular diet. Though I still encourage you to avoid carbonation and any gas producing foods such as beans or anything that you know makes you gassy because your bowels are still not working regularly and having extra gas will be very uncomfortable for you. We want you to walk as much as you're able to and be in the chair as much as you can. This will aid in your recovery and help with your pain.
We will also have you do breathing exercises. This machine is called an incentive spirometer, and this will assist you and opening your lungs after surgery and preventing pneumonia. We encourage you to do this 10 times an hour every hour while you're awake.
You will be on a bowel regimen, and what this is is we will prescribe medications to help stimulate your bowels and help you with constipation. You may be on milk of magnesia, Senokot, MiraLax or suppositories. We highly encourage to take your bowel regimen. This is not a situation where once you have one bowel movement, you are out of the woods. You will want to take medications throughout your recovery and even a month or two after surgery to help keep your bowels moving.
You will be prescribed a blood thinner unless you are on one prior to coming in. What we usually prescribe is something called Lovenox, which is an injection. You will take this while you're in the hospital and for 30 days after your discharge. You are at higher risk for getting a blood clot, and studies have shown that this Lovenox is really important for preventing blood clots from forming. This sometimes can be expensive, but we will work with you on finding out where it may be more affordable for you at discharge. Now, if you are on a blood thinner such as Warfarin, Eliquis, Xarelto or Pradaxa, you may resume that after surgery, but it really will depend on input from your surgeon at that time.
You will be on antibiotics while the stents are in place. We will have you on something called Keflex or Cephalexin, usually twice a day until the day before you have your stents removed. We will switch over to a stronger antibiotic and you will take that the day before, day of and day after stent removal.
After discharge, you will be alternating between diarrhea and constipation. I highly encourage you to play around with the medications we prescribe for constipation to keep your bowels moving. The goal would be looser than formed so that things continue to move through your bowels without issue. Most individuals experience a poor appetite, therefore we encourage you to take in smaller, more frequent meals, so perhaps five or six small meals per day instead of three larger meals. The poor appetite is usually due to slow moving bowels and taste changes related to the surgery that you had. If you're not taking in enough nutrition, I do suggest drinking between two to three supplements in between meals such as Ensure, Carnation, instant breakfast, or even a homemade protein shake. I encourage you to eat what sounds good and not start any new diets at this time. Remember, most people lose about 20 to 25 pounds after surgery and this is linked to higher complications. You are not losing fat, you are losing muscle.
As long as you do not have a medical condition that limits your fluid intake, I highly encourage you to drink eight to 12 cups of hydrating fluids daily. This could include lemonade, Powerade, juices and water, but the important thing is to take in enough fluids to keep you hydrated. We want you to continue to walk frequently throughout the day, taking several small walks will increase the amount of steps that you take and help with blood clot prevention and constipation. Continue to increase the amount of steps daily and think ahead on a plan of attack in case there's poor weather or other issues that may hinder being able to go outside.
Hi, I'm Dani, I'm the local Hollister representative, and I cover the whole state of Kansas and a lot of Missouri and I cover every healthcare facility in both states, every healthcare facility, every home health agency, every rehab, every nursing home, et cetera. And I am here to provide support for you. I work very closely with KU Medical and they are the best hospital. They do the best urostomies, and they are amazing. They're state of the art. They're stoma bootcamp rivals ... No one else does this. So congratulations to you for picking such a great hospital to have your surgery done at. I am the representative of Hollister, which makes the ostomy products, and I am simply here to quickly tell you about a free program that they enroll you in called Secure Start services. And after they enroll you at KU, you'll get a gray box on your front porch, which looks like this, and it will arrive via Federal Express about 48 to 72 hours after KU enrolls you. We can also send it to a family's address or to a rehab facility if you prefer.
And this is just the first step in the whole life of the Secure Start services. So this box will contain lots of things, a little black bag that looks like this, and that's a little travel bag which will contain some scissors and a little magnetizing mirror. The kit will also contain free samples of urostomy pouches and lots of great education tools for you to read so that you can better understand how to live your life normally with your new urostomy patching system.
So the scissors are the ostomy scissors that were in that black bag, those are just used to help you cut out your wafers since you probably will be using a cut-to-fit type product for the first three months because after the first three months your stoma will shrink down and then we can send you samples of a pre-size product that you don't even have to cut anymore, to see if you'd like it before you actually place the order from your distributor for those. So that's what the scissors are for, they're ostomy scissors, and they just make it easier to cut the urostomy pouches.
And then the little mirror that I talked about, that also comes in the Secure Start kit in a black bag, that's magnetized so that if you're out and about, at a restaurant for example, once this whole covid-19 is over, let's say you're at a restaurant in the bathroom and you can just click that mirror on the back of the restroom stall door and that way you can easily see your abdominal area so that you can change your pouching system if you need to. That's all that mirror is for.
And then the kit also contains, like I said, lots of other things that look like this. This is used to give you a good measurement of what your stoma size is so when we do call you and we talk to you, we might say, "What's your stoma measuring at today?" and we'll ask you to put this right around the base of your stoma so that we know about what size it is so that we know what to send you, because we'll send you free samples until we get you to the right product. And what a right product looks like is that you're able to live your life normally. This should not handicap you in any way. So you should be able to shower every day with your product on, with your pouch on, you should be able to work out, you should be able to eat to, live your life normally and have the right product to where it feels good, it stays secure, your skin looks healthy around your stoma, and it doesn't break down. That's how we want you to live. And you'll get 20 of these a month through insurance, so you'll change them once to twice a week, and then the rest of the week it'll be fine. And that's called a predictable, secure wear-time. That's what we're looking for.
So you have to have the right fit and formulation in order to get that. We have hundreds of products and they're very customized, so that's why we're here is to help you get to that perfect product that best meets your lifestyle. So we will continue to send you free products until we get you there, so be sure you talk to us. We will call you from a 224 area code and it doesn't say Hollister on the caller ID so just make sure you pick up the phone when we call because we won't call more than three times if you don't call us back because we don't want to bug you. So we will talk to you however, as much as you want us to talk, once you do respond to us.
And five years from now if you're going on vacation and you're wondering what pouches you should wear at the beach, we can help you troubleshoot that as well. So we are here for the rest of your life if you want us to be, you can call us, you can email us, you can FaceTime us. Just make sure for those first three calls, at some point when we do reach out to you in that first couple of weeks post operatively, that you do talk to us.
And then also if you need anything locally, like if your home health wants some more education on how to take care of your urostomy, or your rehab facility, call me. My name is Dani, my number is (913) 636-2285, and I can help with that. The Secure Start number is, I need my glasses here, it's (888) 808-7456. And that's the Secure Start number so that's that service that I was talking about. They can also help you, once you're ready to place your order for your products, we can do the insurance matching tool, which is just a real easy way for us to help you find that cheapest place to buy your products that matches your insurance so that you hopefully don't have to pay out of pocket, because you should get 20 of these a month without really having to pay. So that's another great use of Secure Start that we are able to help you with.
I hope I've helped and good luck to you. I know that I will meet you one day soon, hopefully. And good luck, and KU is the best so you are in great hands in this journey. Take care.
Thank you so much for watching this presentation. And let your surgeon know if you have any questions. Thank you.