Living with Spina Bifida, Managing Incontinence, and Creating Your Own Solutions

The following transcript was generated electronically. Please let us know if you see any transcribing errors and we’ll get them corrected immediately. 

Bruce Kassover: There are lots of treatments and therapies and solutions out there for people living with incontinence, but sometimes you find that there isn’t a therapy or a treatment or a solution for specifically what you’re going through. Today, we’re going to be talking with Derrek, who is in that situation himself.

He’s living with spina bifida, and found that there is a product that could help him live and manage his condition a little easier. So join us today and hear how Derrek addressed his distinct needs and learn more about how his product might be something that you’re interested in too.

Welcome to Life Without Leaks, a podcast by the National Association for Continence. NAFC is America’s leading advocate for people with bladder and bowel conditions, with resources, connections to doctors, and a welcoming community of patients, physicians, and caregivers. All available at nafc.org. 

Welcome back to another episode of Life Without Leaks. I’m your host, Bruce Kassover, and joining us today, as always, is Sarah Jenkins, the executive director for the National Association for Continence. Welcome, Sarah. 

Sarah Jenkins: Thanks, Bruce. I’m so excited for this discussion today. 

Bruce Kassover: Yeah, me too. This is going to be a really good one. It’s going to be very interesting because we have a guest, his name is Derrek Cook, and Derrek was born with spina bifida.

And, in his process of living with that condition and learning how to better manage it and to live as full a life as possible, he’s developed a product that I think a lot of other people with similar conditions, with various disabilities or challenges of one type or another may find really interesting. So welcome, Derrek, thank you for joining us. 

Derrek: Thank you for having me. 

Bruce Kassover: Yeah, we’re really interested in learning all about not just your product development process, but your whole journey to what got you here. So maybe you could tell us a little bit about yourself, your backstory, and give us an idea of how you got to the place where you felt you wanted to develop a product.

Derrek: Like you said, my name is Derrek Cook. I am 35 years old. I’m going to be 36 in a couple weeks. and like you said, I was born with spina bifida. And spina bifida, it’s a birth defect that affect the neural tube. And the spina bifida that I was born with- It was myelomeningocele, and that’s the most severe form of spina bifida.

There’s three type. Occulta, which is the, not rarest, but the most mild form. Then meningocele, which is mild. And then the most severe is myelomeningocele. With spina bifida, not everybody with spina bifida has the same issues. But one of the things that people with spina bifida can have to deal with is incontinence, and that is one of the things that I deal with on a daily basis.

Bruce Kassover: Now that’s really interesting. Now, of course, our focus with this podcast is incontinence, but I’m interested in, more broadly, about spina bifida. What sort of symptoms do people experience when they have it? What, what sort of range of things do, does somebody with spina bifida deal with?

Derrek: Other than incontinence, also they may have a problems with walking. With me I wear AFO leg braces to help me walk. Also, I use a cane due to having a second spinal surgery back in 2010. And also, too, sometimes I have a hard time walking long, long distances.

If I’m going somewhere and I know it’s going to be a long distance walk, I will take my wheelchair. Or, also, when I have blisters or wounds on my feet, I’ll be using my wheelchair as well. And people with spina bifida do, other people with spina bifida do deal with blisters and wounds and have to do the same with having to use a wheelchair.

Bruce Kassover: That’s really interesting. So you mentioned, you talk about surgeries and, other sorts of assisting devices. What sort of general range of treatments does medicine have available today for people with spina bifida? Are there advances? Are there new therapies or medications or things like that? What do you have to, deal with to help manage your condition more generally? 

Derrek: That, I wanna say, about about 10, 10 or 11 years ago, the medical community came out with a new surgery for when the baby is in their mother’s womb. The doctors will go in and fix the affected area of the baby’s spinal cord. Unfortunately with me, that did not happen until after I was born.

Also, With incontinence there is medication to deal with incontinence. I do take one medication, but also two. And I just recently got a new new one implanted in me. About yeah, 12 years ago, I got a neuro from Medtronic, a bladder stimulator.

And it’s a really small stimulator with a battery implanted in me, and it helped me manage my bladder. I do have overactive bladder, so the stimulator is supposed to calm my bladder down, which it does. And also with the medication, it calms my bladder down as well. But also to go to the bathroom, I do use intermittent catheters, and I use them several times a day to go to the bathroom. 

Bruce Kassover: It’s very cool about using the neuromodulation devices because we talk a lot about neuromodulation for things like overactive bladder for people who have that condition without having things like spina bifida. But to hear the fact that it’s useful for people in your situation as well is really interesting. I like hearing that it has a broad spectrum of use cases. So that’s very cool to hear.

Derrek: I’m not knocking, not trying to sound like I’m knocking any of my past doctors. But my, one of my old urologists, he, when I really started having bladder issues several years ago, he did not recommend that. He recommended a bladder augmentation where he would go in, take a small, a piece of, I forget if it was, like, my large intestine or small intestine, wrap it around my bladder, and then, so then my bladder wouldn’t overreact as much.

But he did not hear anything… he didn’t know anything about the simulator, and at that time, I didn’t know anything about it either. I actually did my own research and found out about it online. 

Bruce Kassover: You know, that brings up a really important point actually, and it’s something that we try and stress a lot which is the fact that, you know what, in people’s healthcare journey, it’s not uncommon to find a physician who, for whatever reason, is not the right fit for you.

Maybe they don’t have the same sort of bedside manner that you’re looking for, or a different approach, or in, in some cases, like you’re saying, sometimes physicians simply aren’t familiar with what the range of technologies are available for treatment today. So we always stress the fact that it’s so essential to find doctors that you really mesh with.

So to hear you say that, it, it’s really important, and I’m glad you mentioned that. That’s definitely something that we wanna make sure that people don’t forget. That’s such a good point. And the idea that there are, technology and treatments are always changing means that, it’s not uncommon to find people who may not necessarily be up on the most recent stuff. So I appreciate you mentioning that. Now, you were talking about catheterization also. Tell me about that process for you. 

Derrek: So I actually have one of the bags that I do sell. I do have to catheterize five times a day, and I do wipe myself with an iodine. And then I’ll have to, before that, I wash my hand, and then wipe with iodine. But then after that, I’ll put the catheter in me, and then I’ll go to the bathroom, and then I’ll take it out and then throw it out. And then the next time I need to go to the bathroom, I’ll just repeat the same process. 

Bruce Kassover: Now, for those people, we have a whole range of listeners, people who have all sorts of different types of conditions and levels of severity, and there are certainly people who are just discovering now that they may have to consider catheterization for themselves in the future. How difficult, uncomfortable, whatever is it? Or is it a relatively simple process? 

Derrek: I’ve been catheterizing since I’ve been about five or six years old. So it’s normal. It’s normal for me, and also it is a simple process. Sometimes, there will be times sometimes where the catheter will go up the wrong way, and then it’ll be a little bit painful, and then I’ll have to take the catheter out, and that’ll throw it out, and then I’ll use a different one.

But it is pretty simple thing to do. I have read online, some people have commented sometimes where they’re like, “Oh, my God. I don’t know if I could do it. It sounds painful.” And I remember one time, I forget how many years ago I was over at my grandparents and my grandfather, I was going to the bathroom, and the the bathroom I always used was in my grandparents’ bedroom. And my grandfather was in my grandparents’ bedroom watching TV, and then he stopped me and asked me, “How painful is it?” And I said sometimes if the catheter goes up the wrong way.” But really, it, the chance of it being painful is… it’s rare.

Bruce Kassover: I like hearing that because, anytime somebody has to do something new, it can be scary, and especially something like that can be really scary for some people. So to hear that it’s not this horror story is very is… I’m sure gives a lot of people comfort, so I appreciate that.

So you have these supplies that go with catheterization. Is that what was the, sort of, gave you the birth of your idea for your product? And maybe you wanna tell us a little bit about that and what you came up with. 

Derrek: So yes so all my, spent pretty much all of my life I have had to catheterize.

I have, when I’ve gone out, I’ve taken some type of bag with me. And back in 2021, I was actually, like around, right over here, right by me, cleaning my kitchen here, and I had the bag I was using then, and it was pretty, pretty open. And I thought to myself, I want a different bag.

And then I thought, I can make a business out of this ’cause I figured that other people in my situation, they don’t want other people to see the catheters and medical supplies and whatever bag they’re, they have. So I came up with Derrek’s Bags and, at the time, I still co-own another online business with a friend of mine.

And I knew about Etsy, and I knew about printing suppliers. And I thought to myself, I just don’t want to sell bags that are, that don’t have anything on them. So I looked on one of the websites that I was using at the time, Printful, and I found a bag supplier, and I started. And then after that, I set up an account on etsy.com, and in March of 2021, Derrek’s Bags was born.

Bruce Kassover: Very cool. And actually looking at your Etsy shop right now. Now, first of all, for anybody who’s interested I want to make sure they know it’s, your Etsy shop is Derrek’s Bags, but your name is spelled a little distinctly. It’s D-E-R-R-E-K-S Bags, B-A-G-S. Is that right? 

Derrek: Yes. That is correct. A lot a lot of people have spelled my name wrong, which is fine. There are different ways to spell Derrek, but, yeah, that, that is correct. 

Bruce Kassover: Very good. Now I see that… now, first of all, before we talk about the bag design, the graphics that you’re using, tell me about i- is there anything in particular about the bag that makes it distinct specifically for people who are carrying catheter supplies and other sorts of things that they want to try and, have a little discretion with?

Derrek: So with the bags that I carry, I do have a plastic bag in the bag, so then I can hide the catheters that way, and the other supplies I have in the bag. But also, I do have, I do sell another type of bag that has a adjustable strap and then an inside pocket, so then if somebody wants to put their catheters inside that pocket or if they wanna put everything just in the bag and then adjust the strap to then close the bag, they could do that.

Also, I sell backpacks and also fanny packs with adjustable straps. So then if somebody is, wants to put, somebody wants a backpack and put it on the back of their wheelchair, they could do that. Or with the fanny packs, they could put the fanny packs in front of them. Or with the bags with the adjustable strap and inside pocket, they could also carry it put the adjustable strap over them.

And then if they’re in a wheelchair, they could just have the bag on their, on their stomach area and wheel themselves. But also, if they walk, they could pretty much do the same, but walk. 

Bruce Kassover: Very good. I see, I I’m looking through some of the things that you have available. And I guess the pro- I would imagine that the most fun thing, or one of the most fun things, is that you do have some some graphics that you, you get a chance to play around with. There are things like I see the spina bifida messages and other disability messages. There are, everything from, I like the wheelchair person with the, “I’m just in it for the parking” message, by the way. That’s a good one. You have, the, there’s a cool rainbow one. Is that the most fun part of everything? 

Derrek: The most fun part is coming up with the designs and then getting messages from people wanting their own design.

That, to me, like, that’s one of the coolest parts of Derrek’s Bags. And then just, And then also, too, getting messages or reviews from people saying, “Oh, I, I love the bag” or, “I love the backpack,” or “I love the fanny pack. I, I’m using it to go…” Not too long ago somebody somebody with spina bifida, they bought a spina bifida warrior bag and they left a review saying that they take it with them to doctor’s appointments and they put snacks and their their supplies in, in the bag. To me that’s one of the best things, too, is getting the review or the messages from the people saying, “Oh, I’m using the bags for what you’re selling them for.” 

Bruce Kassover: That’s awesome. That’s- I love hearing it. And the other thing I want to… that you just mentioned but I want to reiterate is the fact that you do have customization available so people can get their names on things and stuff like that. So that’s a very nice little added touch for people who are looking to get something just, just for themselves. So I also am wondering, I see you have the Yankees cap and I see the Derrek Jeter banner in the background. I suppose may not just be for the fact that you have the same name. You going to try and get licensing with Major League Baseball? 

Derrek: I would like to. 

Bruce Kassover: Sure. 

Derrek: I would like to. I have not looked into it too much. I did try to reach out to the Yankees to see if I could sell bags in the team store, but I couldn’t find an email or anything to contact them. But maybe sometime in the future. I do…

Bruce Kassover: You know what? Maybe there’s somebody from the Yankees organization who’s listening right now, and we’ll see if we can get them to reach out and give you a call directly. One never knows. 

Derrek: Why, yes. 

Bruce Kassover: Excellent. Now, this is Life Without Leaks. And one of the things we always like to ask our guests before we leave is if they have one little hint, tip, strategy, bit of advice for people who are listening to help them live a life without leaks. So I’m wondering if you might be able to share one with us today. 

Derrek: One tip that I would give somebody that has incontinence is, if they want to do their own research into solutions for their incontinence, to search online, and if they find a, like a procedure or like a test or something, to go out and try the procedure or test, and also to find the right doctor to do the procedure or test.

Bruce Kassover: I think that’s fantastic advice, and I appreciate you sharing with us today. And I certainly hope the people who are listening take you up on that. So thank you, Derrek. Thanks for joining us, and I love hearing your story, and hope that the people who are listening, get the word out and that your Etsy store is just inundated with visitors. So thank you. 

Derrek: Thank you for having me. 

Bruce Kassover: Life Without Leaks has been brought to you by the National Association for Continence. Our music is Rainbows by Kevin McLeod. More information about NAFC is available online at nafc.org.