Increasing Quality of Life with SCI: Starting With the Pelvic Floor

Discussed in this Podcast

• Learn more about Pelvic Health Trauma Health Certification
• Get certified in pelvic health from the OT lens here

A little more about Kaylee Johnson, my guest:
Kaylee Johnson has gravitated toward providing compassionate OT working with people, and their pelvic floor, after neurological injury in her 13 years of experience. She became an expert in the SCI and TBI field through empowering patients at two level one trauma hospitals- in neuro ICU, neuro floor, outpatient, and most recently she worked at a national center of excellence for TBI and SCI.

When she moved from Colorado in 2020 she decided to pivot into SCI & TBI consulting, and pelvic floor therapy and maternal wellness, another story for another day 

She can be reached at Kaylee@aspenwombwellness.com or www.aspenwombwellness.com

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Inside Pelvic OTPs United you'll find:​

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Transcript

Lindsey Vestal Kaylee, let me give you a let me read a brief bio of you for people that may not be familiar with you. And then I'm going to introduce our topic. So today's topic is called Increasing Quality of life with spinal cord injury, starting with the pelvic floor. And I have to say that I thought Kaylee out because I have seen her incredibly passionate, enthusiastic responses to any time anyone mentioned this topic. And I just felt I felt her wisdom. I felt her just her support. And I was like, is there any way you could come on? I want to learn so much more about this topic. And she lovingly said yes, which I was thrilled about. So Kaylee has gravitated towards Compassionate OT working with people there. Pelvic floor After neurological injury. In her 13 years of experience, she became an expert in spinal cord injury and traumatic brain injury through empowering patients at a level to excuse me, at a to at two different level one, trauma hospitals in a neuro ICU on the neuro floor outpatients. And most recently, she's worked at a National Center for excellence for TBI and SDI. When Kaylee moved from Colorado in 2020, she decided to pivot into MCI and TBI consulting and pelvic floor therapy and maternal wellness. I'm so excited you're here Kaylee.

Kaylee Johnson Thanks for having me. Lindsey This is awesome. 

Lindsey Vestal My gosh. No, I am. I am so incredibly excited that you're here. My first question is, some people joining us may not know much about spinal cord injury or even pelvic health. Right. So can you tell us a little bit about how these two things are related? 

Kaylee Johnson Yeah. So I have to be honest here, and I would say that before I took your course this past year, I would say I didn't really realize that I was working in Pelvic health as I was working with people with neurological injuries. Right. But I was if we consider like the main functions of the pelvic floor, we're talking about self-care issues. We're addressing bowel bladder, menses, management and then intimacy Post-injury Right. So and then if we take that and spinal cord injury, we're also thinking about posture. You talk a lot about that in your course, and it makes so much sense with spinal cord injury because we're always looking at postural alignment, especially in a chair. And then depending on level of injury, you know, you're looking at what muscles are firing what or not in order to kind of help facilitate good posture going forward so that you have successful aging with a spinal cord injury. And the other thing I think about is in Pelvic health, when we talk a lot about like this trauma informed care, right. And this population is absolutely no exception because typically they've been through some kind of trauma, having a spinal cord injury. And a lot of people have had a spinal cord injury may also have some kind of mild traumatic brain injury anyway. So it's important for us to kind of keep that in mind. And even if they don't recall the actual incident, their families definitely are very aware of what has happened to them and their tissues may recall it, even if their brain isn't registering it. Their tissues have been through something really heavy and hard. So it's important to kind of meet them where they are and then having multiple levels of consent while we're doing the things with this education. So many people I have found, Lindsey, when I start to say, okay, we're going to talk about bowel management or bladder management or like, let's look at casting, whatever. They're like, Yeah, it's fine. Just go ahead and look at and do what you need to do. I have no dignity, which is crushing and I think that's so important. You know, people, even without neurological injuries, feel disconnected to this pelvic space. And so it's important to kind of bring it all back to that dignity piece. Yeah. 

Lindsey Vestal And I love that. And while I don't work with this population at all, I all the time that I'm working with postnatal people, they actually see that a lot to where I'm asking their permission to undress and to to put on a robe. And they're like, you can stay here. You don't need to leave the room. You know, everybody thinks. Seen everything. And I have that same that same sense. This is obviously a very different scenario. That same sense of reclaiming dignity and being able to speak up for your needs and say, no, actually, like, can you leave? Let's say if a practitioner doesn't offer to do so is I'm always using that as a moment to reeducate and let them know, like maybe a lot of people have violated your boundaries or has, you know, assumed permission. But I want you to know that that's not the case anymore. Right? And so anyway, what you said really resonates with me. 

Kaylee Johnson Yeah. So exactly like and then getting people to be back in their body. Right. Because so much after this traumatic injury, they're disconnecting and we're as medical providers, especially in acute care, we're kind of teaching that in a way which I want to kind of help shift that where we need to be talking to people, even if we don't think they're conscious or laying down any new memories or whatever, talking to them and telling what they're doing, what we're doing, why we're doing it, all of the things. Of course there's a different thing if we do have a severe traumatic brain injury and they're agitated depending on, you know, Glasgow coma scale. But then we don't want to be talking at someone the whole time, but telling family, whoever else is in the room. And then I just want to go through like a little bit of some anatomy and do some like terms. So if we're talking about spinal cord injury, we have to talk about the Asia levels, right? So we've got A, B, C, D, E, right. So these four are kind of their own separate thing. And then E is like, you're doing really good. Everything's going well. So the most common type of spinal cord injury is an incomplete tetrapod injury. And then when we're talking about like bowel bladder health, all of that, we need to talk about upper motor neuron, lower motor neuron, and that we can say happens at that corners medial areas region so that like T 12 L two so you know just a little bit below your belly button. So belly button is usually about T ten and that's important because they will the valve program, bladder sexual function will look a lot differently depending on what's been impacted. So for a lower motor neuron, they're not going to have for a male or someone who identifies as a male with their penis, they're not going to have those sporadic erections. So that's a good sign. And then when they're the bowel program is happening, you are going to notice that rectal tone. Okay? And then that will translate over into into C and then also about program. And then for the upper motor neuron, then you know, you're going to have more sporadic erections. It's usually a little bit easier in intimacy in that. So if you acquire a patient, say, for an outpatient or whatever, and maybe they haven't gone through the Asia testing, you can check, right? So you can have a conversation with your patient and ask them if they're noticing rectal tone when they're doing their bowel program. Yeah. Are they having spontaneous erections? If they're doing their bowel program, are they having a lot of leaking? You can you know, if you're at this point with them, you can check for BCR or anal link. So there are some things you can do if your patient hasn't been like officially told that they have an upper motor neuron or lower motor neuron injury, if that makes sense. 

Lindsey Vestal Yeah, that's that's excellent. 

Kaylee Johnson So, you know, so we're doing bowel programs, capping and everything else that I like to pull in on. Bridesmaids when I talk about this, you know, when Lillian is in the, like, beautiful, like sterile environment of the dress shop and, you know, she's frantically looking around for a bathroom can find it. So, okay, got to take to the streets. And then she finds herself defecating in the middle of the city. Anyway. So we are doing bowel programs for people so that they don't have to have that moment. Right. And they're not going to feel the need to go typically. So I've seen the look. On people's faces when they don't feel it, but they smell that they're like praying that they have just had gas. Right? That it wasn't like an involuntary bowel movement. So this is where, like starting from, you know, immediately after they have an injury, that we are addressing this because of the dignity piece. Okay. So, you know, Lillian then loses her bowels in the middle of the street. Right. So we are doing bowel programs and casting for patients and educating them to do it on their own so they can avoid a bridesmaid moment. Right. I have witnessed and been with people in public when they lose their bowels and it's always the look like, I please let that just be gas. Right. This is typically. Yeah. So and typically before, you know, we have their routine down and whatever, but we want to try to help them maintain that dignity. So it's important to get them on a routine, get them on a schedule. And as coaches, we think about, okay, when did you and we have this discussion, like, when did you have your bowel program? I mean, sorry, when did you poop before you had this injury? Was it in the morning? Was it at night? What were your habits like? Because they're still the same body, even if it went through this traumatic injury. Yeah. Yeah. So, you know, going back to that dignity piece. But it is also important to educate these patients on what to do if they do have an accident in the middle of public, like how do you maintain your dignity? So I always coach patients on asking the venue like if something were to happen, where can I go? And I know that's can be hard and exhausting for people, but can just be helpful. And then having a to go bag, we call it. What? Were you going to say something? 

Lindsey Vestal We're just going to say I love this advice because it's one of those things that I could imagine doing that kind of thinking through what could happen and arming them with that education around how to handle those those various scenarios would be so incredibly empowering. So that you could then focus on what's next. And I think sometimes we kind of get lost in the what ifs and and the worst case scenarios. And I love that you're going there right away so that they can then focus on the rest of their life. 

Kaylee Johnson Yeah, totally. And, you know, and then it's also, I think helps to add some flexibility because I find so many people who are living with this type of injuries, spinal cord injury, brain injury or even stroke, you know, tend to as soon as they find a restaurant that they like that they know has like an accessible bathroom, whatever, then that's where they're going and that's it. And then they get nervous about traveling or whatever. But if you tell them like, it's okay to like, go in and talk to people and plan it out, then I think it gives them that freedom a little bit more too. 

Lindsey Vestal I love that. I love it. You've already shared like such tangible tips. It's incredible. And you know, just by reading your bio and speaking with you before, you know, I knew that you have worked in a variety of settings. Right? Well, spinal cord injury and you've already shared a little bit with us. But are there anything is there anything else that comes to your mind, Kelli, of where you think we may be missing the mark when it comes to Pelvic health with this population? 

Kaylee Johnson Yeah. I mean, I really I think kind of things we've talked about a little bit already, but the biggest thing and we know this through research, right? I've seen it. I've had patients tell me in outpatient, but the research supports this is bowel education and intimacy. So people leave with a lot of questions. And I've seen it happen time and time again with bowel education. Well, I take this bowel medication and at this time and this bowel medication at this time and they get into and the hospital and you know, our rehab settings can be pretty sterile, right? Yeah. So then when they go to outpatient or they're, you know, living in their home environment now they're eating different food. They're being they have to modify their medication on their own, knowing through the, you know, going through the Bristol stool chart and saying, okay, well, my stool was this way. I've had really watery stools, like, yeah, maybe I'll keep taking my stool softener. Not the best idea, but they weren't taught or educated on the need to adapt all these things. Yeah. So think about that and then I think about the intimacy standpoint for sure. Like most men don't know that they can impregnate a woman a lot of times, like so at that education, like right off the bat, yeah, maybe you're on testosterone, so maybe you have slower swimmers right now. So maybe if you do want to have a baby, then backing off of the testosterone and then that there's a lot of different things that they can try, you know, like penis pump, different medications if they're having a hard time with, you know, erectile dysfunction. But they could even be having like autonomic this reflexive right. So what does that look like and getting medications from your doctor beforehand so that you're not in, you know ad and you can't get your blood pressure under control And then women too, which is awesome. I mean, and then talking about, you know, arousal because of that upper motor neuron, lower motor neuron, there could be physiological changes that need to happen versus maybe the psycho genetic changes. So focusing and giving education on partners and the patient of like you need to verbalize your level of injury, like where are you injured, you're not going to break me. And what can you focus on other parts of my body that are still intact and just yeah, being forthright with that and then with women, women can carry I actually, when they have a spinal cord injury, actually treated a woman who was pregnant and in a car accident but she carried till term and they you know, she had a planned C-section because she was having some like uncontrolled Aids. So they were worried about that natural process. And then I had her as an outpatient and she's rocking it. So. . 

Lindsey Vestal Incredible. I know just hearing you say these things, it's so incredibly OT, right? Like, it's it's activity analysis. It's bringing up topics that are part of our everyday life that are challenging to discuss even when we haven't had an injury. But now it's Ashley with an injury. And now my question for you is I hear you saying this and in addition to thinking my goodness is just so OT my next question is, is there a role like when people have an injury like this and for instance, you just talked about this away from being in a unit to maybe going to outpatient. Does a nurse normally talk about these things? Does the doctor talk about are there otters or maybe even pets coming in? I mean, this role is such an incredibly important bridge. Is it being handled in most settings? 

Kaylee Johnson Yeah. So research is saying likely not as much as it should be. And we can attribute this to a length of stay for a lot of things. Right? So we used to see and keep patients who had spinal cord injuries for an average of 98 days, and now it's down to like 30. So. You know which 30. Again, that's an average. So I've also seen patients who were there for two weeks, you know, like just in that's in like the inpatient rehab setting, I'll say. Anyway, So it depends on where it's happening and if it's happening. But in my experience, bowel management has been missing the mark for sure. So usually nursing will start talking about it or maybe just start doing things in the ICU. And then, you know, OTS and pets are doing their best and speech therapy are doing their best, but it's hard to get to everyone. And I get that. That's a real big challenge. So yeah, I was fortunate enough where I worked at Craig a lot of resources and you know, they excel at this having these conversations. So I think it's something we definitely need to do better. I mean, even pharmacists are like really an integral part of this as well. I don't know if that answered the question, but yeah. 

Lindsey Vestal Yeah. I mean, I think it's lovely that you had Craig as an opportunity to kind of model how it could be done well and then I'm hoping that you continue to get this education out there and, and I mean, even conversations like this are so helpful. You know, hopefully the more we find our voice and this is obviously a route for Pelvic health, but there are so many ways to be an pelvic health. Right? And I just love Kaylee that you're really helping us see that and expand that definition. Kaylie, can you talk with us a little bit about addressing Pelvic health in a client's natural environment so that we can increase, carry over for, let's say, caregivers? 

Kaylee Johnson Yeah. So I think about this and I so I was part of a team that we did this like almost exact thing. So we did program development where we saw people right after they got discharged from the hospital and then worked with them either in their home environment or like a temporary, like apartment setting. And it was amazing how quickly things fell apart. If like one piece of the puzzle was different, then that can just change everything. So especially like in thinking about public health, So again, thinking about diet or if they're not finding time to drink water or they don't have the access to drink water, someone's not there with them all the time. How about getting meals now that we are in inaccessible environment and then for like bowel bladder, like, okay, this equipment doesn't fit exactly right. Like I don't have the proper positioning to evacuate fully. These meds are a little different. My insurance didn't pay for the meds that I was using in the hospital, and I'm using this other med. So is getting things as close to, you know, what they're going to use when they leave The hospital is so, so, so important. And then I thinking about with O.T., our roles and routines and I'll never forget this one woman, we'll call her Katie. She was doing a nighttime program but not having a lot of success. And so it was important to like kind of back up and talk about her bowel health and everything. And and she said, well, actually, no, she was doing it in the morning and needed to switch at night because the morning was too crazy. She was trying to get her kids out to school and her bowel program was taking too long and that was so important for her to have to go take her kids to school, you know, and then she couldn't spend time with them if she was like sitting on the toilet all morning. So that's so important. And then knowing whatever equipment that we're ordering that day that it works out for their environment to how you can get the best of the best. But if it doesn't fit in their environment or they can't get on and off of it, well, that's a whole other thing. Okay. And then thinking about intimacy, too, you know, being in different postures and positions, like how soft is their bed? Are they able to move around in the bed on their own now to get into different positions, you know, and having the partner be as comfortable as possible with that as well. 

Lindsey Vestal You describe a typical bowel program for someone with an. 

Kaylee Johnson I Yeah. So we want to go back to that upper motor neuron or lower motor motor neuron. So I'll start out talking about upper motor neuron program because that's probably the most helpful. So and most common I'll say. So you will find out day time that will work best for the client and the caregiver. So we'll say we're doing it in the morning so they wake up. I always tell people to have some water just to get that peristalsis program going and then that also helps with adrenal fatigue, right? So we got our water, if you can, getting them sitting up, right? Because we know gravity helps and then having something to eat right again, the peristalsis and then we know the gastro colic reflex is a little bit slower in spinal cord injury because of the paralysis, right, with our external muscles. So then when they do that, then I usually say we'll figure out depending on the level of injury, how they can put their suppository in. Usually you do a rectal check, so either with a tool or a finger and to see that there's nothing in the Volt, we say, and then you want to clear that out because there's no point in putting in a suppository into stool, right? It doesn't then absorb on the muscles. So we're going to insert the suppository after we know that the vault is clear and then you're just going to kind of let it bake in there for 15 to 20 minutes. But everyone is different, right? And again, if you can do this upright, that's the best. So on a commode chair, whatever. But if people are sick or have a bedsore or something, then lying down is fine. So you have the suppository and you're waiting, you know, ten, 15 minutes, you're maybe visualizing having the best bowel movement of your life and then you'll start some digital stimulation. So, you know, and this can some people with spinal cord injury have autonomic dis reflexive with this. So of course you'll clear everything with the provider on this. But so you're doing digital stimulation. So you're inserting a tip of your finger just to that first knuckle and then you're just gently, very gently, softly going around in a circle to kind of help everything relax. So then you're starting that wave like movement throughout the large intestines to bring the stool down and then to your go, like ten, 15 times one way, ten, 15 times the other way. And then you're just seeing what the body is doing and then you're just waiting to get everything clear. And then you can kind of keep doing the digital stimulation. Of course, your gloving lubricating before you're inserting a finger. Yeah. And then you might have them do some cleansing breaths to kind of help the rest of the stool come down the descending colon. So inhale, exhale, lean forward again, depending on the level of injury and then exhale obviously helps with that pressure management. So yeah, that's the biggest. That's pretty much it. 

Lindsey Vestal I would love to know, Kelli, a little bit about I mean, you're clearly such an expert on this area. And you know, for someone sometimes being in a in a field, as long as you have, some of that passion can dwindle. And I really admire how for you you can I can really feel it. And I'm wondering, like how how you found yourself here. Like, how did you get into this area? 

Kaylee Johnson Yeah, I don't know. Maybe you found me, Lindsey, but maybe that's I think it was maybe sparked in leaving college. I was a caregiver for a young guy who sustained a severe traumatic brain injury, so I took care of him. We did all of his self care. I traveled with him. So I got to see firsthand what life was like in a chair and the challenges and struggles with that. And I guess my at my first job, they it was one of the level one trauma centers. They were just starting to kind of write out about protocol. And so I found myself kind of helping facilitate that for patients and making sure that staff that we were all kind of adhering to this protocol to kind of help everyone out. So I guess I would say those things. And also, I found that when we would initially mobilize someone, how you would really see people's spirits get depleted, when they would then smell themselves because they had an involuntary bowel movement. And so I think I realized at that moment how important this is for people's dignity to get their pelvic health in their pelvic space kind of managed. And I think we can all relate to that. Like, I know, I mean, I have two babies and I was definitely have a lot of urinary accidents, neurogenic bladder like after I had baby. And that's so hard, especially as a society. We don't always talk about how hard that it is. Yeah. 

Lindsey Vestal So that's awesome. And I have one last question for you, which is for for those of us that this is a budding interest or that we want to know more, are there courses or resources or anything that we can check out to further our knowledge? 

Kaylee Johnson Yeah. So there's a lot of great information out there. And I would say the the number one. But there's the consortium excuse me, for spinal cord medicine. Excuse me. There's bowel and bladder clinical guidelines. It is from 1998, so some language will be a little different, however. I know, but it has amazing information and we've learned more, but like the body hasn't changed that much. So that's a great place to start. It's a very thick book. But also going on the American, the Asia, the Asia website, as I say, the American Spinal Cord Injury Association. There's the Acip, which is the Academy of Spinal Cord Injury Professionals. They have like a yearly conference I've presented at that hospital here. There's like and then there's the Model Systems Knowledge Translation Center. They have a lot of amazing things. And believe it or not, I think it would be so helpful for clinicians to log on to YouTube and look up level of injuries and bowel programs because patients are doing the education. They're like, This is what I do for my bowel program. And of course not everything's always the prettiest. But you can learn so much just by seeing the struggles that they go through to poop. I love that. 

Lindsey Vestal Advice. That's perfect. Well, Kaylee, thank you so much for your time and wisdom and for sharing all this with us. It was so, so inspiring and so inspirational, the work that you're doing. 

Outro Thanks for listening to another episode of OTs and Pelvic health. If you haven't already, hop on to Facebook and join my group OTs for Pelvic health, where we have thousands of OTs at all stages of their Pelvic health career journey. This is such an incredibly supportive community where I go live each and every week. If you love this episode, please take a screenshot of this episode on your phone and posted to IG Facebook or wherever you post your stuff and be sure to tag me and let me know why you like this episode. This will help me to create in the future what you want to hear more of. Thanks again for listening to the OTs and Pelvic health podcast.