Transcript Bladder Cancer and Ostomies with Wound and Ostomy Nurse Cindy Myers

September 29, 2022

Click here to listen to the podcast.

Voice over:

This is Bladder Cancer Matters, the podcast for bladder cancer patients, caregivers, advocates, and medical and research professionals. It’s brought to you by the Bladder Cancer Advocacy Network, otherwise known as BCAN. BCAN works to increase public awareness about bladder cancer, advances bladder cancer research, and provides educational and support services for bladder cancer patients and their loved ones. To learn more, please visit bcan.org.

Rick Bangs:

Hi, I’m Rick Banks, the host of Bladder Cancer Matters, a podcast for, by and about the bladder cancer community. I’m also a survivor of muscle invasive bladder cancer, the proud owner of a 2006 model year neobladder and a patient advocate supporting cancer research at the Bladder Cancer Advocacy Network, or as many call it BCAN, producers of this podcast. This podcast is sponsored by Seagen/Astellas, EMD Serono-Pfizer, Genentech and Merck.

Rick Bangs:

I’m pleased to welcome today’s guest, Cindy Myers. Cindy has a bachelor’s in nursing and is a certified wound and ostomy RN. She has been a nurse for 17 years, with 14 of those years specializing in wound and ostomy care. During those 14 years, she worked in both a large hospital in Phoenix and for the past five plus years, as a clinical research specialist for an ostomy supply manufacturer. She is now working in patient care again, where she feels she can make the biggest difference. She understands the importance of awareness and is organizing a fifth annual Run for Resilience 5K in Arizona. And this event falls on Ostomy Awareness Day, which is Saturday, October 1st. Cindy, welcome. I’m so excited to have an ostomy nurse join me on our podcast.

Cindy Myers:

Well thanks Rick. I am super thrilled to be here and hopefully I can share some knowledge with your audience.

Rick Bangs:

We’re looking forward to it. And so, one of the most challenging decisions for many bladder cancer patients, as you would know, particularly those with muscle invasive bladder cancer, is the choice of a urinary diversion. And most will choose the ileal conduit. I think it’s about three quarters maybe, which is technically a type of ostomy. So can you explain what an ostomy is and the types of ostomies that are used by patients, especially bladder cancer patients.

Cindy Myers:

An ostomy is the surgical procedure and it changes the way one will urinate or stool and the way it exits the body. The stoma is the opening created by the ostomy surgery. That stoma is made right from our intestines in both the stool and the urinary diversion. There are three types of ostomies, colostomy, an ileostomy and a urostomy, also called the ileal conduit. A colostomy is created from the colon, also known as our large intestine, when a portion of the colon or that rectum is removed. Then the remaining portion of the colon will be brought up to the abdomen where the stoma is created. Important to know as the stool from a colostomy is typically a pasty or formed, therefore it’s much easier to manage.

Cindy Myers:

An ileostomy is created from the ileum. This is a portion of our small intestine. That stool is going to be liquid to mushy and can be very difficult to manage. I often call this the trouble of ostomates. The output is liquid because it bypasses the colon where most of the absorption takes place. And finally, and most importantly for our discussion, is the urostomy or the ileal conduit, which is a urinary diversion. This surgery is fascinating, because they take a piece of our small intestine, the ileum, and they use it for a conduit for the urine. Hence the name ileal conduit.

Cindy Myers:

Some of the reasons why one would have an ostomy is due to cancers, bladder or bowel, that is birth defects, incontinence, inflammatory bowel diseases like Crohn’s and colitis. Then there are other reasons like pelvic or abdominal trauma from an accident or injury, maybe even a gunshot wound and the stoma can be temporary or permanent. Now what’s so important for the patient and the public to know is an ostomy can be lifesaving and/or life restoring.

Rick Bangs:

And life changing too. So we noted in your intro that you’re a certified wound ostomy nurse, which was actually a new term for me. So can you tell us what that is and how it’s different from another ostomy nurse called a certified wound ostomy continence nurse?

Cindy Myers:

Yeah, so we’re all registered nurses who hold a bachelor’s degree or higher, and we have completed focused education on wound and/or ostomies and/or continence care. We meet very stringent and predetermined standards and must pass a rigorous exam to get where we are. These credentials provide really formal recognition of knowledge as a wound ostomy and/or continence nurse beyond that, that we gain in nursing school. The difference between me as a certified wound ostomy nurse and someone that has a certified wound continence nurse is simple. One gets certified in wound and ostomy care and these two have an overlapping knowledge and skills that can work across the entire healthcare continuum. The addition of the continence portion means that they are equipped to provide acute and rehabilitative care for people with the disorders of the GI system, the reproductive and urinary systems and the skin systems. So this scope is often for nurses that want to work in an outpatient GI or urology clinic.

Rick Bangs:

Ostomy nurses play a critical role for preparing for radical cystectomy and ostomy surgeries. And I can tell you from personal experience, I worked with an ostomy nurse to kind of measure where exactly the ileal conduit would be placed if the neobladder didn’t work for me. So tell me about some of the things you would normally do during this preparation for surgery time.

Cindy Myers:

So this is probably one of the most important times that one should meet with an ostomy nurse, because this preparation, this education, can change the outcome for that patient at the end. So what we do is we pre-mark that patient, just we want to pick the best location on the abdomen for that stoma. We make sure there that site is within the rectus abdominal muscles. This is important. We make sure it’s visible to the patient and located away from skin folds, creases, bony prominences, and even the belt line if possible. The stoma site marking greatly increases the chances of an optimal quality of life and independence for that patient. A poor placement, which usually happens with a emergent surgery or when we can’t see the patient, that can cause leaking, skin issues, stoma issues, problem with fitting, emotional trauma to the patient.

Cindy Myers:

Then what we do from there is move on to what to expect after surgery. And this is talking about the products and what to expect with these products. We teach them what they’re called, a skin barrier versus a wafer, which are by the way interchangeable, but we hear both. How to empty a pouch, how to clean the pouch, what the consistency of the output will be, and how often they’re going to change their skin barrier or their wafer. We can address at that point, anxiety, fears and any questions they may have, which are usually focused on diet, exercise, clothing and lifestyle. And like I said before, if we’re not consulted by the surgeon or that surgery is emergent, the pre-op site marking and education will not happen and that can cause some delays in rehabilitation.

Rick Bangs:

And so when you see patients, what are their most common questions before surgery?

Cindy Myers:

Oh boy, they’re fun. They always want to know if people are going to know they have an ostomy? Should I tell people I have it? Will I smell? What can I eat and do I have to change my diet? Can I shower or swim? Will I still be able to do the activities I do now? Will I get my hands dirty, emptying the pouch? And does insurance cover my supplies?

Rick Bangs:

Yeah, those are all good questions. Let’s talk about caregivers because they often play a pretty critical role in the recovery period and then even after recovery. So what should caregivers do and know before the surgery?

Cindy Myers:

It is so important. I’m glad you mentioned that. Caregivers are very important and if that patient is comfortable with the caregiver, that caregiver should be present at every single education we provide, so they can hear it too. The patient’s almost always really anxious and fearful, which sometimes shifts their focus to those fears. If there’s a caregiver present, they can pick up those missing pieces that we’re teaching them. And I always provide a booklet for the ostomate and or ostomate to be, and I always provide a booklet for the caregiver to take notes in.

Rick Bangs:

Oh nice.

Cindy Myers:

And the other thing about the caregiver is, be supportive and be careful of what you say. And I only say that because I’ve been in many situations what I’ve heard, a caregiver in this case, a spouse said, “Those things are so gross.” And that naturally sent that patient into a tailspin. This is difficult on both the patient and their caregiver. So being positive and really knowing that this surgery is saving or restoring their loved one’s life will benefit both the caregiver and that patient.

Rick Bangs:

Yeah, I think that’s really important advice. So what should patients expect after the surgery?

Cindy Myers:

Well, hopefully they should expect us, right away. And this is if a hospital employs a specialist like us, not all of them do. So they should expect us coming in for a visit right after surgery to say, “Hi,” introduce ourselves or reintroduce ourselves if we met them before surgery. And we typically visit that patient, day one or post-op day two. And we know how much education we’re going to provide at that time when we see the patient, when we know how they’re feeling. They may be in too much pain. And in that case we’ll just do a really short and supportive education and maybe elaborate with their caregiver. If they are feeling up to it though, we may do an entire pouch change, show them how to empty their pouch, et cetera.

Cindy Myers:

Next visit, we often give the caregiver or the patient the opportunity to be hands on. So when that appliance is off though, we talk about the stoma. We show them the stoma, we show them the sutures around the stoma and how they’ll dissolve and be removed within a couple weeks. The stoma will have some bleeding and some mucus. This is normal. The stoma will shrink over time, once that swelling goes down, which importantly is something that they need to know, because their product size can change and that can become a potential problem.

Cindy Myers:

So for the ileal conduit, there will be two stents that will come out of that stoma. Those stents are going directly through the ureters to the kidney. They’re long skinny tubes that come out of that stoma, but they’ll be removed by the surgeon, usually in 10 to 12 days after surgery. We teach those patients to hold those in place. Some surgeons suture them in and others don’t. So if they’re not sutured in, we say, “Hold onto those so you don’t cough them out or something.” But they’re very easy to manage if they know ahead of time what they’re for. There’s always going to be a consistent flow of urine. So paying attention to emptying the pouch is very important, because it can get very heavy and then it can just, seriously, fall off. So there are options to connect the urostomy pouch to a leg bag or a bedside jug. So while they’re out and about or during the night, they don’t have to get up numerous times to empty their pouch. So they’ll receive everything that we taught them pre-surgery, once again.

Cindy Myers:

And at that point though, we do address complications. So, when to contact their physician, their surgeon, or their ostomy nurse. We troubleshoot problems that they could have when an ostomy, like leaking or sensitivities to the adhesives. And we teach them tips and tricks to fix those issues or change their product to a better suited product for that issue. So the products chosen for these patients are, first of all, there’s three large manufacturers out there with a multitude of products and they’re all very good and not each ostomate is the same. So we look at their stoma size, the shape of their stoma, where it sits on their body, their habitus of their body, the capabilities they have, their lifestyle and then what they want.

Rick Bangs:

So it sounds like one size isn’t going to fit all here and you’re helping customize from all these different variables and options, what makes the most sense for this particular patient.

Cindy Myers:

Exactly.

Rick Bangs:

I see in here patients talk about potential leaks and skin issues before surgery and sometimes they talk about it after. So what advice can you offer to these people?

Cindy Myers:

I think one of the biggest things is I tell them to be patient and keep their expectations reasonable, until we find that solution. What we tell them is an ostomy appliance or wafer, should last three to five days. If they’re getting that wear time, awesome. If they’re not, we need to find out the right product for them, but be patient and let’s do this together and problem solve, because it takes a team. So once leaking and we can’t figure it out, they need to go get help right away. What happens is that skin breaks down and becomes a vicious cycle. So some of the reasons why one would leak are the improperly fitted wafer, a stoma sitting in a skin fold or a crease next to it, a stoma sitting flush with the skin or even below skin level. The lumen, which is the hole where the output comes out, sometimes can be pointed up or down and that can cause a problem.

Cindy Myers:

Sometimes our stoma will have high output, especially with the stool stomas, they can have very high output and that can cause a problem. And then parastomal hernias can cause a leak. So at that point, get an appointment with that ostomy nurse right away, or go to your surgeon’s office and see if there’s a resource there. But what I love to tell patients is the manufacturer of their product, so one of the big three, every one of them have really great resources and ostomy nurses to help walk them through things. So if we’re not available, if they can’t get an appointment with us, there is somebody that they can reach out to.

Rick Bangs:

After surgery, what are the most common questions?

Cindy Myers:

Wow. So they’re still addressing that fear and anxiety and they may or may not have retained anything we said preoperatively. So all those questions will come up again and this is common. So then they ask about their output, “Can I control my output?” The answer is no for a patient with a urostomy or an ileostomy. But fortunately for colostomies, sometimes they can be a candidate for training their bowel via irrigation. They ask again, “Can I swim, shower, or bathe?” And the answer is yes, but the incision just needs to heal first. So most of those products are waterproof. And there’s even really cute swimwear by some companies to wear, for a patient with an ostomy. They ask, “Can I travel with an ostomy?” And yes you can. It just requires a little forethought.

Cindy Myers:

“What can I eat and what foods do I have to avoid?” And this is very difficult because this ranges for everybody. So we just educate them on some of the things they can do to test it. So we introduce food slow. We tell them, if you have an ileostomy, you’re going to have to chew your fibrous foods better or peel the skins off the apple and eat it. So this can be very, this is different for everybody and there’s a lot of different things we can teach them, but we just kind of wait for the event to happen and then we can address it. But for the urostomy, really nothing is off limits, except for foods can cause odor. So asparagus and fish. So when you’re out eating at a restaurant, you might want to avoid those particular foods, so there isn’t an odor. Most importantly, and I cannot say this enough, is stay hydrated. Dehydration is the number one common complication with patients with ileostomies and with urostomies it also can be a problem.

Cindy Myers:

So for ileostomies or I’m sorry for urostomies, the ileal conduits, really stay hydrated there to keep that urine at a really healthy pH level. That will prevent you from getting skin issues if there is a leak. And also to help prevent urinary tract infections. And again, staying hydrated, replacing your electrolytes if you’re dehydrated, all these things are really important. The one thing I really like to talk to patients about is the United Ostomy Association of America. If you can go on their website, they have an incredible booklet called Eating with an Ostomy. It’s like my Bible and it covers everything for every one of these patients. And then the last question, and this is often one that they hesitate to ask and sometimes don’t is, “Can I be intimate?” And the answer is yes.

Rick Bangs:

Okay, we’re going to come back to that. But before we do, I want to talk about the caregivers again. And I want to shift the focus from the before surgery and just like we do with the patients, talk about after surgery. So what should caregivers do and know, after surgery?

Cindy Myers:

So I guess one of the things I like to talk about is, this is a major adjustment for both the ostomate and the caregiver or a loved one. The ostomates may feel nervous, confused and sad. And so may the caregiver. It’s important to keep the lines of communication open and be patient. Involve them in activities, even if the caregiver must minimize their activity to be at their level. Maybe the caregiver works out five days a week, well maybe cut that down to two to three days at home with the ostomate and do light floor or bed exercises that help rebuild the core. Don’t make them feel left out because they have their ostomy. They will get there on their own time.

Cindy Myers:

And then things that they can remember is the reason why you love that person has not changed. They are still who they have always been despite physical changes. And there is nothing that a person living with an ostomy can’t do. So help them get there, encourage them, raise them up, stay involved. And then lastly, watch for signs of depression. Often these patients do get depressed, which is going to be normal for a couple weeks to two to three weeks after surgery. But if they continue to show those signs of depressions, they need to seek help.

Rick Bangs:

That’s an important topic and one that is really not taken care of a lot of the time. So putting that discussion on the table is probably one of the more critical things a caregiver can do, because sometimes the patients aren’t willing to admit.

Cindy Myers:

I agree.

Rick Bangs:

So you work with a lot of bladder cancer patients. What seems to surprise them most about an ileal conduit?

Cindy Myers:

They’re always surprised that their ileal conduit is made from a piece of their small intestine. So where they stool from and that it still functions the same. So for instance, our intestines, from our mouth to our anus, are lined with mucus to protect us. That ileal conduit, although not attached to the GI system anymore, still has mucus. It also still does peristalsis, which is the contraction and expansion of the muscles. So sometimes they don’t think that they’re going to have that, because it’s not connected, but they do. And this is important because that helps keep those urethras protected in the kidneys, because that outward motion of that contraction and expansion will keep the bacteria from flowing back into the stoma and causing a urinary tract infection.

Cindy Myers:

And then the second question I always hear is, “What are those little tubes in my box of pouches?” And this is sad again, why don’t they know this? Because they didn’t get the education. So what they are, is the connectors for the nighttime drainage jug or bag. So they can attach to their pouch and sleep through the night or they can even attach it to a leg bag, strap it to their leg, put some pants on, and they can go out in public without having to worry about using the restroom so often. And once they find this out, it’s a game changer.

Rick Bangs:

Yeah, I mean this is one of the advantages of having an ileal conduit is these kind of options. So it’s important for people to know what those connectors are, so I appreciate you bringing that up. So what are some other key lessons learned that you can share?

Cindy Myers:

This answer isn’t simple, because I have learned so many lessons hearing from ostomy patients all over the West Coast, because at my previous job I was a clinical nursing specialist and I would talk to nurses and ostomates all over the West Coast and I learned so much. But the biggest takeaway I can give one facing ostomy or continent diversion is, you matter and you have rights. And I say that because there’s times their rights don’t… I’ve heard about, “I’ve asked to use a public restroom to empty my pouch and they don’t have a public restroom and they won’t let me use it.” So the United Ostomy Association of America has stood up and become an advocate for patients and they have made the rights and I just wanted to tell you what their rights say, and it’s, “To achieve a desirable quality of life, a person needing ostomy or continent diversion surgery must have access to high quality care in all healthcare settings and should receive appropriate education and support to promote optimal adjustment to surgery.”

Cindy Myers:

Counseling and care in the patient bill of rights should be provided by a trained medical professional such as myself or a nurse that actually specializes in ostomy care. They do not have to be certified. So many patients are discharged without pre-op or post-op education and those patients fall right through the cracks, every time, which can lead to many issues, most of what we addressed. So these issues, not to mention leaking and things like that, but these issues can lead to poor recovery, poor quality of life, depression, isolation, complications and hospital readmissions. So we want our patients to succeed, feel better with an ostomy or continent diversion, get back to baseline or even better than baseline in many cases. Live life to its fullest like we all should. And there are many studies out there that show ostomy education is associated with a significantly shorter hospital stays, a decrease in readmission rates and detection of early stoma related complications.

Rick Bangs:

So make it a point of getting the education before you leave. That needs to be one of the goals, so when you get discharged, you know what to do and what to expect. That’s, I think. So important. So let’s differentiate between the ileal conduit experience and expectations for a man versus a woman. What are your thoughts on that?

Cindy Myers:

Well this is going to depend on the surgery and the extent of the surgery and what other organs are removed. For men, a radical cystectomy, includes removal of the bladder, the prostate, the seminal vesicles, and the pelvic lymph nodes, therefore a man is not going to be able to ejaculate after surgery, however, they still retain the ability to have an orgasm. And then they also sometimes suffer from erectile dysfunction, which can be caused by nerve damage or sometimes just psychosocial issues. But not all is lost, because there are many treatments out there for that and even procedures now to restore nerve damage. And then for a younger man who wants to father a child, they should consider banking their sperm before surgery.

Cindy Myers:

For a woman, same thing, it depends how many organs are involved. With a radical cystectomy, it’s going to be removal of the ovaries, uterus, fallopian tubes, the surrounding lymph nodes, the cervix of part of the vagina, plus of course the bladder. And for the first few weeks to months, but depending on the woman, they’re very sore that there’s intercourse involved. So we have to always teach them, you’re going to be sore. Well first of all, they have to avoid it for a while and then you’re going to be sore, because the surgeons create a new cervix for you. And sometimes we have to get that tissue worked up and loose so they can experience intercourse pleasantly. And then for childbearing aged women, again, talking to a fertility specialist can be really important if one wants to freeze their eggs. For men and women, sexual function may be influenced by body perception and image due to the stoma and pouching system and lack of male or female parts, which can make them feel less. Therefore, education, pre and post-surgery, again, are so important.

Rick Bangs:

Talk a little bit more about sex and intimacy because we referenced that earlier and you just walked through some important information. What do you tell your patients about sex and intimacy with an ileal conduit?

Cindy Myers:

So if they ask us, and we are so happy when they do because it’s hard for us to bring it up. And again, it’s a huge conversation and the ileal conduit or ostomy should not stop them from having a sex life and enjoying intimacy with their partner. I remind them that intimacy is all about trust, closeness, and a deep level of familiarity. So the more you share with your partner, the stronger the bond will be. I had a female ostomate tell me years ago that being intimate with your partner is not always between the legs, it’s all those things I just mentioned. And if that is there, the physical intimacy will come naturally. The surgeons, again, advise you to wait four to eight weeks after surgery to have intercourse. And this gives you time to grow the bond and time to start slow. So we talk about cuddling, kissing, and touching for those weeks, and that’s going to aid in breaking those fears and build up of anticipation. You can look at it like weeks of foreplay.

Cindy Myers:

Some tips and tricks for intimacy, we will teach the patients are, empty that pouch prior to intercourse. Make sure all your connections are closed tightly. A fabric pouch can minimize crinkly noises and prevent that pouch from rubbing on your partner’s skin. Use a tube top or a wrap around the ostomy to make it feel more secure to your body. Or you can invest in specialized, beautiful, sexy garments that are out there for ostomates. And then avoid foods that cause gas or odor. And then don’t be concerned with positioning. This is a big question. Do what works for you and most importantly, go at a comfortable pace. This will only make the next experience easier and more pleasurable. Usually I find that the partner of the ostomate is not even phased by the stoma. They are the one you fell in love with and that hasn’t changed.

Cindy Myers:

If you’re single and want to date, this is another problem we see. They start to worry, “How am I going to introduce this stoma to somebody?” So my best advice is, tell them on the first date, be honest and upfront. This will save a lot of stress and worries, if you are dating someone, then you try to tell them later. There are a lot of estimates out there with dating stories and each time I read one, I am moved to tears with the level of acceptance out there from the ostomy community once the awareness is raised. So finding a local support group, going to that UOAA website, United Ostomy Association website or calling the ostomy product manufacturers or their website, you’ll have a lot of answers on your intimacy. And the other thing is, every one of the answers on these websites is from an ostomate. They’ve been through it, they know. So you’re not talking to somebody who’s just me.

Rick Bangs:

So that’s all great advice. And I want shift and get some of this great advice for a different topic, which is traveling with an ileal conduit. So what guidance and advice do you have for that?

Cindy Myers:

So there are some challenges, but all can be managed again with some forethought. So don’t pack your supplies in the check baggage. This is the number one mistake they make. They do. Put plenty of your products in your carry out bags, so they’re available if an issue arises during travel. Also, if you use a cut to fit wafer, which is cut to fit the size of your stoma, cut a few ahead of time so you don’t have to carry scissors in the carry on, because there’s a good chance TSA is going to take that away from you.

Rick Bangs:

Oh yeah.

Cindy Myers:

Yeah. And when you pack, pack more supplies than you think you will need. And I say this, because many times when you travel, your bowels get off track. You’re tasting different foods, you’re drinking more alcohol, and these two things can lead to higher output, so just be prepared. And then empty your pouch before you go through security. Carry a TSA travel card with you so you don’t have to verbally explain the ostomy to an agent in front of other travelers. So save yourself that embarrassment and have that card ready. If you don’t have that card already, you can obtain it through the UOAA website, the DME catalogs or your ostomy supply manufacturer.

Rick Bangs:

And what are DME catalogs?

Cindy Myers:

Oh, Durable Medical Equipment Supplies. I’m sorry. So that’s where an ostomate will get their supplies from. So there’s big ones out there and then there’s smaller ones, but they usually have cards in their catalogs.

Rick Bangs:

Excellent, thank you. All right, so I see a lot of questions about exercise when patients are selecting a urinary diversion and it becomes a factor in choosing a urinary diversion. So I have two questions. Are there beneficial exercises, for example, those that might strengthen the core that are viable for patients with an ileal conduit? That’s the first question.

Cindy Myers:

Yes. Let me first preface that one should always speak to their surgeon or healthcare professional before engaging in any physical activity. With that said, I love this quote by Dr. James Levine, a Professor of Medicine at the Mayo Clinic, and he coined this phrase, “Sitting is the new smoking.” And this, I’m passionate about. Physical activity, whether it’s core related or not, can boost anybody’s confidence. So I really advocate that for physical activity. Ostomy surgery involves that abdominal muscle like I told you about. So rehabilitating that is very important. And there are a lot of programs out there that are evidence based and credible. So look for those programs specifically. Collin Jarvis, he’s an ostomate, he’s a long distance runner and he’s the VP of Stealth Belt and he has several great videos on safe activity after surgery.

Cindy Myers:

Convatec is a manufacturer of ostomy supplies and they have a three phase program called the Me plus Recovery that teaches gentle enhanced core recovery movements. And these can be started day one or day two after surgery. Sarah Russell, she’s an ostomate, she’s a clinical exercise specialist. She’s the creator of the Me plus Recovery program, and she actually has a really great Facebook page called the Ostomy Studio Community. And on her page, she holds presentations and classes. And I have presented on Me plus Recovery countless times when I worked for Convatec and I have never met a nurse or a surgeon that hasn’t been acceptant of it. Matter of fact, I’ve heard surgeons say, “Why didn’t I think of this?” So it’s really important. I think we need to push this into the preoperative state so patients know, hey, actually, they can enhance their core before surgery, which is even better. And then again, right after surgery.

Rick Bangs:

Okay, so second exercise question. In general, what restrictions or considerations might someone with an ileal conduit have regarding exercise? And I’ve seen questions about weight lifting, biking, swimming, and playing golf.

Cindy Myers:

So again, I’m going to preface, talk to your surgeon or your healthcare provider just to make sure you’re safe to do these things. So as far as weight lifting, rehabilitating the core muscle first would be advised so one can decrease the risk of causing an injury. The same for golf. There is a lot of core movement with golfing, so being strong first is a good idea. There are support belts and/or hernia belts on the market that you can wear during weight lifting or playing golf. For high impact sports such as football, an extreme support belt or a stoma protector accessory can be worn to protect the stoma and keep the core strong. Other sports, like you mentioned, swimming and biking, probably don’t have any restrictions. You just need to go at your own pace. I recently met an ostomate at a support group who was an avid runner, but opted to first get back on his road bike to challenge himself six weeks after surgery. And he did this because he was like, “Running is not going to be good for me.” But he was successful and now he’s out there running again.

Rick Bangs:

That’s awesome. Patients can certainly go to the BCAN site, which has a lot of wonderful resources, or they can go to BCAN and BCAN has a survivor-to-survivor connection where you can meet with and talk to somebody like you. Or they can go to the BCAN Inspire web forum and they can interact with literally thousands of people who have ileal conduits or neobladders or are survivors of muscle invasive or non-muscle invasive bladder cancer. What kind of resources, and you’ve talked a little bit about some of them, but what kind of resources are out there for patients with an ileal conduit?

Cindy Myers:

There are so many, and this is, I want to really emphasize this. You may not know this. Again, somebody may come out of surgery, go home and not ever know that there’s a resource out there until they have a problem. So one of the first things I would say is try to find a local ostomy outpatient center. If you can find one of those just for troubleshooting and issues, that would be your number one. But again, there’s a lot of education and the United Ostomy Association of America, uoaa.org, I believe that is probably one of the most important because there’s a wealth of resources there. They can help you find a support group. There are local support groups all over the country, so you can go in, type in a zip code and find a support group to go to. The support groups are instrumental in connecting ostomates to others living with an ostomy.

Cindy Myers:

I attend these all the time and many times the first meeting is filled with tears from a brand new ostomate. And by the end, they’re so relieved that someone knows what the hell they’re talking about. And it is true, they are scared when they go in and they walk out thinking, “Hey, I’m not the only one.” And then they become a member. And then there’s always an ostomy nurse at that support group meeting for anything coming up clinical.

Cindy Myers:

Again, the product manufacturers are a huge resource. You can call their 800 numbers, tell them you’re having an issue and they’ll connect you with a nurse. You can enroll in their education programs and they will send you education. They’ll send you samples of products and then they send a nice carry tote for your supplies, which is nice to have when you travel. Home Health can also be a resource, especially if they have an ostomy specialist employed. And then the Durable Medical Equipment Suppliers, DMEs, I’ll just say some of the large ones are Byram, Shield and Edgepark. All three of those platforms have really good ostomy education, so nobody should be left out of that. And then there’s Telehealth. So Convatec sets you up free with Telehealth. These are things that people should know when they’re having an issue. They shouldn’t fend for their selves.

Rick Bangs:

Yeah, certainly an abundance of possibilities, so thank you for pointing us in the right direction. You’ve got your finger on the pulse of the ostomy world. Tell us what’s new or might be in the works for the future?

Cindy Myers:

Wow. There’s some really fun products coming out. I call them niche products. They are specialized accessories that are created usually by an ostomate and they can be wonderful. One is a device that talks to your smartphone and will tell you when your ostomy pouch is getting too full. This is great for a patient with an ileal conduit. They’re beautiful and huge pouch covers to make you feel more confident, especially if you’re wearing a bathing suit or if you’re a child with an ostomy. Ostomy clothing lines are growing. They are garments that the ostomy pouch sits in, which helps keep that ostomy and the ostomy pouch, low profile and make it more discreet. Most of these products are out of pocket, which is the problem with them. So not covered by insurance, but hey, if one wants something, they’ll pay for it and they’re helpful. There is an ostomy company called Trio, and this is very new on the market and they make a strictly silicone adhesive and accessories which are super flexible and lack chemicals that could irritate the skin.

Cindy Myers:

And then convexity and I’m not sure if I could explain convexity correctly. An ostomy wafer that goes onto the patient’s skin is flat. Convexity is a wafer that has a bowl shape and that bowl shape can go around that stoma and pop it out and then help a lot with these stomas that are in creases in skin fold and convexity is getting highly utilized. It was not utilized so much in the past because we were always worried about it. But these are becoming very soft and very flexible, so many people are putting these on patients now and getting successful wear times with them. Lastly, there’s a company called Corstrata. I mentioned Telehealth, Corstrata employs certified wound ostomy continence nurses like myself. So if you can’t get to an appointment at an outpatient center or you don’t have transportation or you just live in a rural community, you can get an appointment with a Telehealth nurse.

Rick Bangs:

Wow. So many possibilities. So finally, I want to hear a little bit about your Run, Walk, Roll to raise awareness Ostomy Awareness Day, which again is Saturday, October 1st.

Cindy Myers:

Yeah, the Run for Resilience, this is held each year on Ostomy Awareness Day. This year, it falls on October 1st. It is a worldwide virtual ostomy 5K and in person in a few states around the country. The Run for Resilience in my state, Arizona is a fun run, walk or roll. And I say that because other states have a real run, so a timed professional run that real runners go to. And this whole Run for Resilience is supported by the UOAA. And in Arizona, our event is going to be packed with fun. I’m super excited. We have a kids’ run, we have games like ostomy bingo, we’re going to be grilling hot dogs and hamburgers. We have a live band to hang out and dance to. So we’re really excited. I’m hosting this event to raise awareness here in Arizona to educate and erase the myths, stigma and embarrassment that are sometimes associated with having an ostomy or a stoma. And the theme this year is Ostomies are Life-Savers. And if you want to learn more about it, you can go to ostomy.org to see if there’s an event in your state.

Rick Bangs:

Okay, so ostomy.org.

Cindy Myers:

Ostomy.org, or you can go to the UOAA Run for Resilience 2022, 5K.

Rick Bangs:

Excellent. All right. In case people want to get in touch with you, could you share your email or Twitter handle so people can find you?

Cindy Myers:

Absolutely. My Twitter handle is @rncindyostomy. So I’ll spell that. Symbol @ R-N-C-I-N-D-Y-O-S-T-O-M-Y. Or my email is cindywoundostomynurse@gmail.

Rick Bangs:

Excellent. All right, great. And Cindy with a y? Just make sure.

Cindy Myers:

Cindy with a y. C-I-N-D-Y.

Rick Bangs:

Okay, great. All right. Just a reminder, if you’d like more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1888-901-2226. That’s all the time we have today. Thanks for listening, and we’ll be back with another interesting episode of Bladder Cancer Matters. Thanks again, Cindy.

Cindy Myers:

Thank you.

Speaker 1:

Thank you for listening to Bladder Cancer Matters, a podcast by the Bladder Cancer Advocacy Network or BCAN. BCAN works to increase public awareness about bladder cancer, advance bladder cancer research, and provide educational and support services for bladder cancer patients. For more information about this podcast and additional information about bladder cancer, please visit bcan.org.