Speaker A [00:00:02]:
Welcome to the Paralysis Nutrition Podcast, where changing your eating habits is the key to losing weight, improving bowel health, and feeling your best. I’m your host, Fatima Fakouri. I’m a registered dietitian who’s married to a quadriplegic and specializes in nutrition for paralysis. Get ready to be inspired, educated and motivated so you can take control of your health using the power of food. Let’s get started. This is the Paralysis Nutrition Podcast. Hi, everyone and welcome to this week’s episode of the Paralysis Nutrition Podcast. This week I have a very special guest, Dr.
Speaker A [00:00:38]:
Joanne Delgado. Welcome, Doctor.
Speaker B [00:00:41]:
Hi. Happy to be here.
Speaker A [00:00:43]:
And I am so excited to have you. You are the first physician that I have had on the podcast. I have had a lot of dietitians. I have had past clients, but I am really excited to speak with you, not just because of your expertise, but because you come from the medical side of things. Right. I’m a dietitian. I really stay in my scope. Right.
Speaker A [00:01:05]:
And I only talk about nutrition. So I wanted to talk to you today a bit about your experiences and give our listeners some advice. So first, why don’t you introduce yourself a little bit. Tell us what is it that you do, because I said that you’re an STI doctor, but give us the actual, the official details.
Speaker B [00:01:22]:
So, hi, my name is Dr. Joanne Delgado, like you said. So I was born and raised in San Juan, Puerto Rico. Just to give a little bit of background on myself, I completed a physical medicine and rehabilitation residency back there and then I moved to Houston, Texas where I completed a one year fellowship in spinal cord injury. Medicine, disorders, everything spinal cord injury related. After that, it’s a one year fellowship. I moved to South Florida where I currently work and pretty much I am. I work for one of the local hospitals in the Broward county in South Florida and I do mostly spinal cord injury during medicine.
Speaker B [00:01:59]:
Rehab. Right. And medicine in general. I work in an inpatient rehab hospital and I specialize in both acute and chronic spinal cord injury disorders or needs, let’s put it that way. I see all the very diverse population. I see traumatic spinal cord injury. I see non traumatic spinal cord injuries. I see the old, the young as well.
Speaker B [00:02:24]:
I don’t see kids, I don’t do kids. I focus on adults, mostly over 17 years old is my population. But I also have an outpatient practice. So within my hospital I do have outpatient clinic where I see any patients that I discharge from the hospital after their acute rehab stages, but I also see chronic spinal cord injuries. Living in the community that are referred to me. I see patients that completed their rehab in different hospitals, but then they find me in the Internet and then I continue to care for their SCR related needs. So that’s pretty much what I need. I do Monday to Friday, it’s all SCI or spine related disorders pretty much.
Speaker A [00:03:03]:
Wow, we need one of you near me.
Speaker B [00:03:07]:
Yes, I know, right?
Speaker A [00:03:08]:
We travel, you know, we travel two plus hours to go to Kessler, Kessler Rehab in New Jersey where my husband has his physiatrist and you know, his special urologist. And it just seems like there’s not a lot of spinal cord doctors out there. Am I right or is it.
Speaker B [00:03:28]:
That’s true. No, you’re 100% right. Spinal cord injury, I mean it’s. I think it’s getting more popularity among the rehab doctors when they’re in the residency. I think getting more popularity and more people are self specializing in it. But it’s like you say, there’s not a whole lot. There’s always programs that are not left without feeling for fellowships. But recently it’s getting more popularity.
Speaker B [00:03:51]:
So I think it’s hopefully going to look better. But yeah, we need more presence across the states because there’s not a whole lot. And there’s really no other doctors other than SCI trained doctors or physiatrists really that know how to care for spinal cord injury patients and even physiatrists that were trained in their general physiatry residency program in spinal cord injury medicine. It’s something that if you don’t do often or on a daily basis, you just lose your knowledge and then you just don’t recognize the needs on these patients or really don’t know how to treat it eventually because it’s not something that you are used to practice. So I agree with you. There’s not a lot. But interesting is that not only physiatrists can do spinal cord injury fellowships, Internal medicine doctors also can, but I don’t know a lot of people know that. So that’s why it’s not as a specialty that it’s well known in other specialties.
Speaker B [00:04:49]:
Because I have known SCI doctors that are internists and then they did the fellowship and they treat spinal cord injury population on the regular basis. So it’s just a matter of getting the field, spread the word about the field and like who can really train on it and the need of it. Pretty much, yeah.
Speaker A [00:05:07]:
That’s so interesting. And it makes complete sense because you know, most of my clients, they don’t live near an SCI rehab, you know, and I’ve actually heard some people relocate to live near an SCI rehab so that they can have access to the doctors and, you know, things like that. Most people can’t do that. What I find is. And what I, you know, not just with my own husband. My husband is a C67 incomplete quadriplegic and it’s been 19 years now. He just doesn’t have a local specialist, you know, and so a few weeks ago he was at the urologist and it’s, you know, the top urologist in our area. But this doctor doesn’t really know about spinal cord injury.
Speaker A [00:06:00]:
And so my husband actually, I’ll share with you. He felt a little, a little, I think freaked out because he said, you know, I’m having this conversation with my doctor and it kind of felt like we were collaborating, you know, our knowledge and it was like, you should know this, you know, you know, doctor, you should know this. Why am I kind of telling you what I’ve heard, you know, or what I’ve read? But it’s just the spinal cord injury population, it’s small.
Speaker B [00:06:28]:
It is. And it happens. I have patients that have been injured for many years and they find me one way or the other, or either a physician refer them or they were just googling an SCI doctor and they’ve been injured for years and have never seen. I asked them like, what who’s your spinal cord injury doctor or who’s your physiatrist? And they’re like, I have none. Yeah. So they live the life without having someone specialize on it so that can address their needs. So they see me. Their bladders are a mess, their bowels are a mess, their spasticity is out of control.
Speaker B [00:07:02]:
So that it’s, it’s unfortunate. But yeah, I see that. I see patients that get to me years after their injury, even local South Florida patients that have been without an STI doctor for many, many years until they finally get to me.
Speaker A [00:07:16]:
Right. And what I find is that people. And they’re lucky. Right. To find you.
Speaker B [00:07:20]:
Yeah.
Speaker A [00:07:21]:
I will say it’s. It’s like they’re just regular people. Right? Like we’re just, they’re. This community is just regular people, you know, mostly who have been injured. Right. There is of course a ton of non traumatic spinal cord injury, but it’s still, you know, injured. Right. Your spinal cord is still injured.
Speaker A [00:07:38]:
So it’s like you had your doctors, you have your community, and then you’re trying to find support, but nobody knows anything. You know, I’m sure a lot of the listeners have had the experience of going to a doctor or even the error. And they don’t know what’s autonomic dysreflexia. They don’t know what this is. And that is just so terrifying. We had a situation where we had to call ems and, you know, everything’s fine. But I said, he’s having ad. And the guy was like, what are you talking about? You know, And I’m like, oh, my God, I do not have the time to explain this to you right now.
Speaker A [00:08:19]:
Do you have some nitroglycerin? This man’s pressure is through the roof. And sometimes I think it feels very lonely, you know, that people don’t have answers. And, you know, I actually will share this. I found you through social media. Right. Or you found me, and we found each other. So the world is changing. It’s getting kind of smaller in a way.
Speaker A [00:08:41]:
Right. Is that we can access care and get advice and things like that. It doesn’t have to be in our area. And I think that that’s actually a really good thing. But I think you’d be a little concerned, the types of things people ask me because they don’t know anyone who’s speaking, you know, a healthcare professional who is speaking specifically to sci. And I am always like, you gotta find a doctor. You gotta ask your doctor. Because this is not my.
Speaker A [00:09:14]:
I’m just here to talk about groceries. You know, I’m here to talk about fruits and vegetables. People tell me all kinds of things. Like, I actually just had a woman message me today. I said, you know, I’m having Dr. Joanne on the show. And so what questions do you have for her? And some woman. I feel so bad.
Speaker A [00:09:33]:
I have to get back to her when this is done. She sent me this long thing about, I’m on this medication and it’s making me constipated. And I have this. And I’m like, oh, my God, you cannot share this information with me. You know, But I think it’s. It’s really sad. It’s a testament to the lack of knowledge that most doctors have and the lack of access that people with spinal cord injury have to this information. So I want to get into.
Speaker A [00:10:01]:
You mentioned that you see people after years and years of. They’ve been injured for years and their bowels are a wreck, their bladder is a wreck. Can you talk about that a little bit?
Speaker B [00:10:11]:
Yeah. So I have seen it just as recent as yesterday. For example, I saw a patient who was discharged a year ago. I think he had an injury, he fell from a scaphoid and then he fractured his lower thoracic vertebrae. I think he was a T12 paraplegic, or at least that’s he was told he completed rehab in an inpatient rehab facility that’s not specialized in spinal cord injury, doesn’t have anyone who specializes. And he was discharged without much follow up. So he’s been following, let’s say with his neurosurgeon, he’s been following with random urologies, he’s been following with a random gastroenterologist until he finally get to my office. He didn’t got to me directly.
Speaker B [00:10:54]:
And I’m going to tell you this story. He was seeing his neurosurgeon and the neurosurgeon, this is a guy that has been on a bed because then he got pressure sores and he’s been bedridden for a whole year. He sees the neurosurgeon and the neurosurgeon examined him and somehow said, oh, you have severe spasticity, you need a Baclofen pump. So he got to my office because he was seen by our pain doctor for a Baclofen pump. And our pain doctor is like, okay, you don’t need a Baclofen pump. I’m going to Refer you to Dr. Delgado. So I see him and I examine him and I’m like, first of all, he’s a lower motor neuron injury for those probably the ones in the audience are familiar with the term.
Speaker B [00:11:31]:
So he had no spasticity, he just had contractures from being in the bed for so long. But he was seen a neurosurgeon who has no knowledge on what to expect after a spinal cord injury that refer him for a Baclofen pump. He’s a paraplegic and paraplegics are able to do. And he’s a male, they’re able to straight calf pretty easily for them to learn how to straight calf himself. So he comes to me, he just got a suprapubic tube placed two weeks ago and his wounds are completely healed. So there’s really no reason to have a suprapubic tube on a young male paraplegic that can stray cats. So but that’s what happens when you see a urologist who have no experience in spinal cord injury medicine and then they make those decisions. So he was referred for Baclofen pump when he didn’t need it.
Speaker B [00:12:17]:
He was, he had a suprapubic to place when he didn’t need it. He has a colostomy, which he needed back then when his wound was pretty bad, which that is okay. But everything else was like, he had pain and he was not treated. So he’s like. And I’m glad. I told him I’m glad he lives far. He lives like an hour from me. And I told him, I’m glad that you made it to my clinic, and I would like to continue seeing him.
Speaker B [00:12:44]:
But he’s one of those lucky patients or blessed patients that have a good insurance that covers transportation so he can make it to my appointments without having to pay for an ambulance. Because now he’s bedridden. So now it’s just that process of. Okay, there’s so much you can achieve. He’s like less than 40 years old now. We need to start from. From zero. So I sent him to rehab, you know, but it’s.
Speaker B [00:13:10]:
That’s just the most recent experience that I have had. I had another quadriplegic that I saw. He was injured probably over 15 years ago. Quadriplegic. I think it was either a diving injury or a motor vehicle. I don’t remember that. But he is very incomplete. So he can walk, but he has severe spasticity.
Speaker B [00:13:32]:
Severe spasticity. The way he walk is super spastic and requires a lot of energy for him. So it’s very exhausting. And his quality of life is very, very poor because of that. But again, he was injured out of state. He received inpatient rehab in the state he was locally. Then he was discharged. He returned to Florida and never followed up with anyone with experiencing spinal cord injury.
Speaker B [00:13:54]:
So he has been for years in the same dose of spasticity medications that he was over 15 years ago. He was never trained on a bowel program, so he’s been incontinent. He was actually, to that first appointment with me, he was like, over 30 minutes late because he called that he had to come back to his house because he just had a bowel accident. And he didn’t want to see the doctor like that. So he went back home to clean himself, change his diaper, and then come see me. Incontinent bladder as well. So it’s very, very challenging when you have. When you see patients that have been not well managed for her STI comorbidities for so long.
Speaker B [00:14:34]:
And then also patients create habits. You know, patients that are not well trained or well rehabbed, they create bad habits, and it’s very, very hard to take them away from those bad habits. I recently saw another patient. He was injured like 30 years ago, very incomplete quadriplegic. He has a little bit of spasticity, but not that much. So he’s very functional from his mobility. But he has neurogenic bladder and bowel. His bowels.
Speaker B [00:14:59]:
He goes. He says, I’m. Sometimes I go every 11 days. You know, sometimes I go. I go three times in a month. And I’m like. And I try to get him to, okay, let’s do a belly X ray. Let’s see how constipated you may be, because I’m pretty sure you’re very constipated.
Speaker B [00:15:14]:
Let’s try to consider a bowel cleanup and start from serum with a bowel program. I even offer him, let’s take you to outpatient rehabilitation so that they can train you on how to do a bowel program. But he didn’t want to because he was so used to the way he has done things for so many years that he felt. And I understand. It’s like these patients, they are like. It’s hard for them to figure out how to do things on their own, right? And once they have figured it out, it’s very, very hard for them to do the mental switch and have someone else change that. And I understand that. But it’s a challenge for me as a doctor because I know we can do things different and better.
Speaker B [00:15:52]:
I mean, better in my. In my impress, right? For them. But sometimes they don’t see it that way. So they are just very afraid of changing how they have been doing things for so long.
Speaker A [00:16:03]:
Well, I’ll tell you, it’s. All of this just resonates with me so much, because with my husband, it’s so interesting. He’s a C67, incomplete. He’s a quad, but he’s 99% independent now. When I met him, it was 10 years post injury. He had figured everything out. It is not perfect, though. And from an outside perspective, there are things that I see that I know would make things easier for him.
Speaker A [00:16:35]:
But it is just, you know, I don’t know what the word is. It is just like you said, it is like they figured it out. He figured it out. And there is so much pride in finding your independence after an injury, especially for a quad. And so when I say, you know, little things like, you could try it like this, or you could do it like that, even with nutrition, you know, it’s like, well, I don’t want to have a problem. I don’t want to have this. I don’t want to have that. But it’s like, I Know that this will help you, just like you said that, you know, that you can help, but they don’t want to change because it’s so difficult.
Speaker A [00:17:14]:
Right? Because you figured it out and it’s good enough. It’s better than it was, you know, But I really try to encourage people. And now, you know, we’ll get into the bowel conversation. Like, you should poop every day. You’re supposed to poop every day. Like, that’s the gold standard for human beings is they’re supposed to poop every day. And so I’m curious what you think now you are both inpatient and outpatient. What I hear from most people who have gone through an inpatient rehab is that no one tells them that they should go every day.
Speaker A [00:17:51]:
Is that because of. And, you know, you work in the unit, like, it’s a lot of work, you know, to help people do bowel programs and stuff. And so my impression is that when you’re in rehab, you know, the nurses, the doctor, everyone, the care is split, you know, between a lot of patients. And so maybe it’s easier and better for people to do bowel program every other day. Right? But then you go home and you could do it every day, Right? You have your own resources, you have your own time. Perhaps you have a caregiver. Perhaps you have a loved one. Maybe you can even do it yourself, you know, especially if you’re.
Speaker A [00:18:30]:
If you’re a paraplegic, you know, you really should be able to do your bowel program by yourself. So what I’m so interested to hear, what is the bowel program kind of stuff that you guys teach in rehab? Because I’m on the other side, you know, I am not clinical. I’m not acute. I have people who join the program who are usually at least a year post injury. I do get some people who are sooner, but Most people are 10 years, 15 years, 25 years, 30 years, and they’re just like, wow, I never knew I could improve my bowels. Let’s try it. So from the rehab perspective, as a physician, what are you guys teaching your average SCI patient in terms of bowel care?
Speaker B [00:19:13]:
Yeah. So first, at least myself, the way I like to do it, I always guide my team, the nurses, based on what’s going to look like for the patient when they go home. So, for example, if I have a patient who’s going to have assistance at home or has their resources to hire the assistants at home, then I try to shoot for a daily bowel program. But realistically, there are patients that don’t have that. There are patients that can’t afford a nurse going every day to their house to help with their bowel programs or don’t have family members to do it. I try to adjust to that. If the patient may afford every other day nurse to go help them with the bowel program then that’s what we shoot for here in inpatient rehab. Okay.
Speaker B [00:19:55]:
So it really, I really try to adjust to what it’s going to look like for the patient. Same way if the patient at home is not going to have access to a bathroom, to a toilet, then we need to adjust to that. So our bar program, it’s going to probably going to be in the bed. Okay. Or in a bedside commodity. They can fit it in their houses. So, so it really very, very tailored to each patient. What we do in my hospital we have the sixth floor is the, is the, is the neurorehab floor.
Speaker B [00:20:23]:
So at least the nurses are first of all our experience with in neurogenic bowel and bowel program. Anytime my patients are in a different floor, I do my very best to move them because I know the difference that it can make to start a bowel program with a nurse that doesn’t know how to do it, that can traumatize a patient and have a patient to start rejecting and refusing bowel care because of the bad experiences. My priority is make sure the patient is in the right floor of the hospital so that I can have my nurses who are well trained in bowel programs. So that’s also very important. Before we start then another thing important at least that I take into consideration when I am going to start planning how are we going to manage these patients bladder is why were their pre injury bowel patterns? Because in reality there are patients that don’t go every day. There are patients that oh my normal I go every other day and the same time you have patients that they go with every meal. So I have breakfast, I go to the bathroom, I have lunch, I go to the bathroom. So and that’s something that I like to teach my residents as well.
Speaker B [00:21:24]:
It’s like we need to learn about how these patients bowels were moving before their injuries so that we can have a goal. We don’t want to change anything. We’re not going to make a big. We’re not. If it’s working, we’re not going to change it like you said. So that’s important to know as well is what were, what was the pre injury bowel movements look like for this patient. So then once I have all that information. Right.
Speaker B [00:21:48]:
And then another important thing is there’s patients come to ACU rehab in so many medications that they may not really need anymore. And medications also play a big role on, make, on or on achieving good results in a bowel program. Right. So that’s another thing that as a doctor I try to do early on is look at the meds. Let me see what can may be making this patient have more episodes of incontinence outside of our program, or let me see which ones are constipating them more that I really don’t need or I can get rid of. So once I have all I hear.
Speaker A [00:22:19]:
A lot of such and such med, makes me constipated or such and such, I forget the name of it. But there was one medicine that three of my clients in the same, like few months told me made them so bloated it worked great for their bladder, but it made them so bloated. And it’s like, yeah, you have to ask your doctor, you know, how can we adjust? You know, maybe you don’t need that dosage. Maybe you could try this or that, you know, so, yeah, it’s so important.
Speaker B [00:22:46]:
So, yeah, so those are all things that I consider before I decide how am I going to, how is the bowel program going to look like for this patient? But usually the normal, at least in my hospital. And then the other thing is at what time of day we’re going to do it. Right. Usually I start with in the evening because the patients are out of therapy. So bowel perm is not going to interfere with therapy. They’re not going to be losing therapy hours because of they’re having bowel movements. So I always start in the evening and then moving closer to discharge, if the patient says like, oh no, my mom is going to be helping me and she can only come in the morning, or my wife works at night and she can only help me in the morning. Then we closer to discharge, we try to adjust and switch to a morning bowel program or earlier on if we know that information earlier on.
Speaker B [00:23:31]:
But usually the standard is in the evening after dinner to take advantage of one of the reflexes that we have in our body, which is called the gastrocolic reflex, which you probably know.
Speaker A [00:23:40]:
Yeah, I always, always tell people you have to eat before your bowel program. And it’s really interesting that you said you try to start them at nighttime because I actually think, I mean, everyone’s life looks different, but unless you are a morning person, you really should consider A nighttime bow program. Because most people, I mean, listen, if you have the support, right? But like you said, if you have to go in the morning, you got to go in the morning. And I this is why I harp on and on about breakfast. Because so I would say 90% of my clients do a morning bowel program and about 80% don’t eat breakfast. So it’s very, very hard to go to the bathroom when there’s nothing to stimulate your gut. So that’s a great point. And so when you are teaching them bowel program, what are you teaching them?
Speaker B [00:24:29]:
So at the beginning, depending if the patient is a quad or a para, the first goal is that they know the steps so that they can direct their care. I need you. I go in, I explain to them what we’re gonna example, let’s say it’s an upper motor neuron bowel, right? So it’s a reflexive bowel. We’re going to do make sure that patients drink plenty of water. So I how much water are you drinking? Is a question I ask every single day on my rounds. Because if you don’t drink water, it’s going to be very hard to have soft form stool, right? So we make sure they drink plenty of water. We use stool softeners very often. That’s one of the first part of my order sets for admissions is at least a colase.
Speaker B [00:25:08]:
Okay. So I try to use Cole’s once or twice a day, depending on the patient. And then again, if it’s an open motor neuron and it has reflexes, I also want to use my stimulants. I use some sena and then I use suppository. Usually the patients are more open to starting with a suppository than just going straight to digital stimulation. So I try to explain digital stimulation to them early on. And many of them are open to just go with it. Or if they are more complete and they don’t feel it, they don’t care or don’t care as much versus those that are very incomplete.
Speaker B [00:25:41]:
I tend to have more resistance to doing the detail stimulation. But they agree with the suppository at first. Usually my go to is too softener, usually colase. I add ascena usually around lunchtime. And then the suppository with the digital stimulation in the evening. At the beginning, it’s the nurses doing it. That’s the reality. Usually for the first week is the nurse doing it.
Speaker B [00:26:04]:
But during that week I’m making sure the patient knows what we’re doing and the patient can direct their care. So I go in the room and I ask them, did the nurse did the bowel program yesterday? Yes. Did you have results? Yes. What did the nurse do? So I have them narrate me exactly what they did. And sometimes I see, okay, the nurse didn’t do it the right way or yes, they did it the right way. So if the patient had an accident in the middle of the night, I always ask exactly, tell me exactly what the nurse did so that, so I can troubleshoot. So education is going that first week. It’s making sure that they understand the steps, that they understand why we use a suppositor, why we do digital simulation, how it should be done, how many times, for how long, you know, what should we expect.
Speaker B [00:26:48]:
So that’s happening the first week while the nurses are doing it, the patient is learning what is being done.
Speaker A [00:26:54]:
So how long do you think a bowel program should be?
Speaker B [00:26:58]:
Well, in my opinion, to be honest, it should be around 45 minutes.
Speaker A [00:27:01]:
Yes, me too. Okay, 45 minutes or less. Doctor, I have people who have three hour bowel programs.
Speaker B [00:27:10]:
I know, I’ve seen, I’ve seen them.
Speaker A [00:27:12]:
Four hour bowel programs. And I will tell you this.
Speaker B [00:27:17]:
I.
Speaker A [00:27:17]:
Had a dietitian colleague of mine who worked at a rehab and she was saying there are automatic orders from the doctor for bowel program meds. And she said, I think a big part of that is because of the hospital food. Even though there are healthier options, people tend not to order them. Who’s going to order a salad when you can get a cheeseburger? You know, who’s going to get a fruit salad if they have fries, you know, so that plays a big role, I think too. So you said you do the colace, which is a softener and you do the suppository and maybe a senna or something. And so what do you think about these laxatives and Miralax and all that kind of stuff?
Speaker B [00:28:10]:
So I see that very often when their face first coming into the inpatient because that’s what they do in acute care, in the trauma, the trauma doctors and the hospitalists, they don’t know anything about bowel program. Even though when I see the patient in consul and I put specific recommendations, they just don’t do it or they don’t know. So they just want to make sure the patient move their bowels, even if it’s incontinent, even if it’s a little bit or they don’t care too much about that. So many of my patients come in Miralax milk magnesia scheduled. And they’re like, yeah, I’m pooping but it’s like whenever it happens. So I’m not, I don’t use them, I don’t use laxatives. And I try to explain my patients the difference between a laxative and a stool softener and I give them example. Okay, these are laxatives.
Speaker B [00:28:53]:
This is what’s going to happen. If you take a laxative, it’s going to be non predictable. You’re going to go at any time. It may be loose, so there’s no control of it. It can happen anytime. So if you want to go out and you took a laxative, you’re going to go at any moment versus stool softener. Our goal is just to make sure your stool is soft enough so that when you do the bowel program you can pass it. So I don’t use them.
Speaker B [00:29:17]:
I don’t think that they play a role in bowel program for spinal cord injury patients. For bowel program when, if the patient is constipated, then that’s a different story. If the patient hasn’t gone in five days, then yes, you need to take your laxatives.
Speaker A [00:29:30]:
I agree with you for clean out. A lot of times tell you people are not doing what you’re saying. Like everything that you’re saying is so logical and just methodical. And what I come across is people, you know, 10 years, 15 years, 20 years post injury and they’re always constipated, but they’re always taking Miralax, they’re always taking Senna, they’re always taking these things, but they’re not paying attention to fluid and they’re not paying attention to dietary fiber. They’re not managing their stress, they’re skipping meals. You know, there’s a lot of like just lifestyle things going on. And so when you say laxatives don’t have, you know, a part in care, that is just very heartening and I think so surprising for most people because I think they think that you need to take these things in order to go to the bathroom and you absolutely don’t. So can you tell us a bit? Now when you have a neurogenic bowel, your gut motility, it is slowed down, but it is not stopped.
Speaker B [00:30:45]:
Yeah, it does not stop.
Speaker A [00:30:47]:
And I think people think, well, my gut doesn’t move. Yes it does. You have to do things to stimulate that gut. You need to eat regularly, you need to eat enough fiber, you need to drink enough fluid and all of those things so that you can Have a predictable normal bowel, you know, program, and you’re going to laugh. I get people who say, oh, if I eat so much fiber, I’m going to have an accident. I’m like, babe, you take laxatives, that’s why you have accidents.
Speaker B [00:31:17]:
Yeah. Yes, that is that it’s challenging. But it’s like you’re saying, absolutely. The bowels have their own enteric nervous system. Even if you are in the or you pick a piece, you caught a piece of bowel and you put it on a table, it still moves. So the bowels are not paralyzed completely, they are still moving. And if you’re an upper motor neuron, you have reflexes that we use to help you, you know, regular people. For example, moving your bowels or passing gas helps distend your rectum and that itself helps the colon peristalsis so that you can propel this tool when you.
Speaker B [00:31:53]:
That’s why we use, you know, the suppositories or, you know, in babies that you can put a Q tip and stimulate. It’s the same concept. So it’s so important to take advantage of those reflexes to move your bowels. So if you just let it to whenever it happens, you’re not taking advantage of the systems that your own body have to propel the stool out so it can be achieved. I do get it that lower motor neuron bowels are much more challenging, much more challenging than upper motors.
Speaker A [00:32:21]:
But upper motor neuron bowels, challenging with control. And you and I know, but can you just briefly explain the upper and lower motor neuron?
Speaker B [00:32:33]:
So the main difference, it really depends on where the injury happens. In our spinal cord injury, the last portion of the spinal cord injury is our Connor’s medullaries and the cauda equina. And that’s usually the spinal cord ends in an individual around the L1, L2 vertebrae. So any fracture or any injury that affects kind of those level, those vertebrae or that lower portion of the spinal cord, the conus or the cauda equina, is going to result in a lower motor neuron bowel. And the result of that, you have a bowel that is a reflexic, so it has no reflexes. These are patients that are going to have no reflexes in their limbs. No spasticity, no tone, Everything is flaccid. The anal sphincter, which is a muscle, the type of muscle fiber is similar to the muscles in our limbs.
Speaker B [00:33:20]:
That sphincter in lower motor neuroneurs tend to be flaccid or so open it makes continency harder because the stool, if you have any stool close to the rectal valve, it’s just going to come out versus upper motor neuron patients, which is anything that happens above those levels, patients are going to have reflexes, hyperreflexia, spasticity. So that external anal sphincter, like I said, their muscle fibers are similar to the ones in our limbs. It’s going to have spasticity also, so it’s going to be tighter and that helps with continency. These patients are more prone to be continent, whereas your lower motor neurons are more prone to be incontinent. But both can get constipated. That doesn’t mean the fact that a lower motor neuron is having incontinent episodes and what I call soilage doesn’t mean they cannot get constipated. That’s the main difference. When you are treating the bowels or doing a bowel program, you need to take into consideration if the patient has reflexes or not, because that was decide how you’re going to treat it.
Speaker B [00:34:22]:
One of those reflexes is the rectocholic reflex, which I try to explain my patients so that they understand why we use a suppository just to quickly explain it, the rectocolic reflex, pretty much whenever there’s either chemical or mechanical stimulation or irritation in the, in the rectum that triggers colonic peristalsis. So you can use a suppository to irritate the rectum or you can stimulate digitally to stretch it. And that’s going to make your colon move and expel the stool. So that’s why it’s so important to know that, because it helps, you know, you need to take advantage of your own body systems to be able to move your bowels.
Speaker A [00:35:04]:
And I really like how you are really bringing some hope to people because people really don’t know this stuff. The experience that you’re detailing about what you would do with a patient, this is not what I hear. This is really not. And almost all of my clients go to SCI rehabs, the big ones, we’re not going to mention any names, but the big one, right. And, and I think when it comes to. So basically, if you are to go back to your upper lower motor neuron, basically, if you’re a C or a T, level your upper motor. And if you have an L level.
Speaker B [00:35:44]:
Your lower motor, if you’re upper T, you can be a T12 and still be lower motor neuron. But if you’re. Yeah, yeah, yeah. But cervicals Usually traumatics and high or mid thoracic. Yeah, those are going to be upper motor neuron, then your lumbar, your cat eye, equinas, those are going to be lower motor neurons.
Speaker A [00:36:02]:
So I will say I agree with you 100%. Those people who have those L level injuries, they’re almost, I mean, I wouldn’t say they’re not a fit for my program, but that’s definitely not what I’m focused on because my focus is more on like gut health and constipation, spending less time in the bathroom. So when it comes to these patients that do have those L1, L2 T12 level injuries, what is your advice for them? Because I’ll be honest with you, I don’t have much other than honestly eat regular meals, figure out what your triggers are. Because it’s very common that alcohol, certain things irritate people and cause accidents like alcohol, fried foods, spicy foods. But really other than that, I tell them my general gut healthy eating pattern, but it’s kind of out of my control. Rather than just tell them, listen, you need to do XYZ to fix your constipation. I’m much more troubleshooting. I’m much more hesitant to have them even sign up because it just seems so different than what most of my clients experience.
Speaker B [00:37:17]:
Actually, I think that it’s that you do play a big role on, on this patient’s care. I feel because this patient’s bowel ability to maintain continency really depends on their diet. Patients, our goal, when we have a lower motor neuron injury or lower motor involvement is to make sure they have bulk stool. Right? You need to bulk it. And the best way to do that is with fiber. So many patients, they just don’t know which foods are high in fiber. Okay. So that’s where nutrition or a dietitian plays a big role.
Speaker B [00:37:50]:
Also, like you were saying, there’s so many foods that can be irritant, that can have a laxative effect on our bowels that patients don’t know. So they just eat those. And of course, if you on top of that have a sphincter that is very open, you’re going to be incontinent. So these patients is very challenging because they are incontinent very, very often. But if with the correct diet or supplementation, making sure that they have enough of fiber in their diet, adequate control of fluids, it’s not like these patients, you don’t want them drinking a whole lot too because that’s going to make them more loosey. So But I do think that diet plays a big role in these patients. They need to make sure they have plenty of fiber in their diet. Avoid spices, sauces, things that can irritate and have a laxative effect.
Speaker B [00:38:36]:
Another thing that I see very often is that patients may be lactose intolerant and they don’t know they’re lactose intolerant. I have encountered that patients in my, in the hospital keep having accidents. The business of incontinence, we cut down the lactose and boom, bowel program is fixed. Right. And they just don’t know because they were used. Oh, I drink my coffee in the morning or my glass of milk and that helped me go to the bathroom. Yeah, you were lactose intolerance and you didn’t know that?
Speaker A [00:39:01]:
I have a lot of clients with spina bifida, I will tell you. Do you see people with spina bifida?
Speaker B [00:39:08]:
I do. See, I have some when they transition to adulthood. But I’m going to be honest, it’s not much. I may have not even a handful right now.
Speaker A [00:39:16]:
Right. Well, I kind of have a season, I think, where I’ll get a few and then I won’t. But really that level of injury is for spina bifida is usually that lower level. And what’s very sad is that people with spina bifida don’t go through a rehab. Right. So there was no bowel care stuff. And you’d be surprised how many of the spina bifida clients are taking things like Miralax because they’re so backed up, but then they have accidents for days. So it is definitely challenging.
Speaker A [00:39:50]:
So now when it comes to bowel health, right, we want to eat a healthy diet, we want to watch our medications. How often do you think is a good idea to kind of run your meds by your doctor again? Because I’ll tell you something, for my husband, he sees different types of doctors. And so sometimes I’m like, who’s in charge here? Who’s overseeing? And we’re very lucky. I have a brother in law who’s a physician, internal medicine, not specialized in sei. But listen, if you’re in medical school and your brother has a spinal cord injury, you become real interested. And so we’re very lucky that we have him to kind of look over things and say, well, you’re on this and then you’re on this, this. So how often do you think we should do a review of meds? And you know, you’re talking about spasticity and there’s so many meds for all this stuff.
Speaker B [00:40:47]:
So that’s an important question. And maybe, maybe the question that the answer I’m going to give you other doctor is going to be like, are you crazy? Because maybe that’s why I’m so busy. I really prefer if my patients just call me or message me through epic, send me a, my chart message whenever there’s a change in their medication or whenever they went to see a different doctor. Because that way I can avoid any or like maybe try different alternatives. Is I know that alternative is not going to be good for them before they have taken them for many months and then come to me when it’s too late. So that’s. I do get a lot of messages from my patient. My patients in the outpatient are constantly calling me, but I like it that way.
Speaker B [00:41:28]:
Or at least send me a message through epic. It’s easy. Nowadays, this is the platform that we use is very easy. The patients can create a MyChart account and they can message me and we can just send messages. So that’s how I like to do it. You know, it’s like you saying, I hate when my patients are. And this is me personally when they go see the gastroenterologist for their bowels and I’m like, no, don’t do that. They don’t know what they’re doing.
Speaker B [00:41:54]:
Then my patients come, they put them in medication for like opioid induced constipation, you know, the ametiza or the other one. I’m like, that’s not gonna help you. Or Lindsey Lindsess. Yes. I see it so often. So it does happen a lot. Even in my community where I’m here, I’m available even in my patients.
Speaker A [00:42:13]:
It’s just one person though, girl. Just one person. So, you know, I, we also went to a GI doctor and I actually reached out to you for this because my husband was having abdominal spasms. So, so strong. I mean, this guy has a very high pain tolerance. Okay. He does not complain. But he said, I can’t do that again.
Speaker A [00:42:38]:
Like whatever just happened to me, I won’t survive if it happens again. And of course, you know, it did happen again. He was having these very strong abdominal spasms. And you had said he needs to get a scan, you know, because this could be bowel related. So can we talk about bowel related side effects? Like what else can happen in the body if you are not pooping frequently enough, Whether it’s every other day or every day, you know, if it’s been a while, right. And you’re backed up. What can happen to your body?
Speaker B [00:43:12]:
Yeah, well, several things. I mean, starting from the same GI system. If you’re constipated, and every time that you move your bowels, you’re passing hard stools, for example, you got a risk of hemorrhoids, anal tears, you know, bleeding from your rectum, all those things. That’s just as simple as that. To start with the GI tract. But also most of spinal cord injury patients have some sort of neuropathic pain or spasticity. So constipation, it’s known to aggravate those. So your neuropathic pain is going to get worse when you’re constipated.
Speaker B [00:43:47]:
Your spasticity can get worse when you’re constipated. And many times I see patients just like your husband or my spasms are getting out of control. And when I start asking questions, their bowel habits have changed. They’re not going every day like they were before. So those are one of the things. And then worst things. I mean, you can really get a big, big impaction. And I have had patients that require to go to the emergency room and end up in an operating room under sedation for a decent impaction.
Speaker B [00:44:17]:
So that could be the worst case scenario. So I have seen those patients that need to go to the OR under sedation for this impact. It could be avoided. Okay. So I think those are the most common complications. But the neuropathic pain exacerbating and the spasticity getting worse, I see it very, very often. It can happen. Remember sci, with spinal cord injuries, anything that’s nauseous, below the level of the injury, it’s going to aggravate your pain, is going to aggravate your spasms.
Speaker B [00:44:46]:
So constipation is one of those. And it doesn’t have to be too many days constipated. If you’re used to going every day and all of a sudden you’re going every three days you’re constipated. So your body is going to. The way, the way your body is going to let you know you’re constipated. Other than feeling bloated is going to be your pain, your spasms are going to get worse.
Speaker A [00:45:07]:
Wow. And we had that experience. It was a few months ago that I reached out to you about that. And yes, going to the bathroom helped everything. Right. And that stopped. It’s so interesting you mentioned the nerve pain because, because people, I mean, maybe a year ago people would reach out to me and say, do you know of A diet that can help with nerve pain. And I would immediately say no, because there is no magical food or diet that is going to get rid of your nerve pain.
Speaker A [00:45:39]:
And then I started to focus on gut health and bowel health. And my clients would tell me, I have one client actually want to record a podcast episode with her too. Catherine. She actually has transverse myelitis, so not a spinal cord injury. But she said that she has severe nerve pain and that her nerve pain pretty much resolved when she started pooping every day. And it was just life changing because this is a woman who was pooping once or twice a week and then she went and started pooping every single day. And her nerve pain, in her case, really, really almost is gone. And so for anyone out there who is listening, who’s like, what can I eat? What can I do to make my nerve pain better? You need to move your bowels, right? You need to move your bowels.
Speaker A [00:46:33]:
And then another question I have is, so I posted on Instagram if anyone had questions for you, and I actually got a question about probiotics. So I’m a big fan of getting probiotics from food, but I do think for spinal cord injury, there is a large kind of population that has gut dysbiosis. Right? There are changes in the gut that happen after a traumatic spinal cord injury. And you do have too much bad bacteria and not enough good bacteria. So I think a probiotic is a good idea. Now, the person who submitted a question says that they are on a prophylactic antibiotic for UTIs, right? So a low dose of an antibiotic forever, right. What should they do for probiotics? What’s your opinion? I will say on this prophylactic for UTIs.
Speaker B [00:47:32]:
So, yeah, that’s, that’s challenging, you know, because it’s an old practice, you know, and many, many doctors, like old school doctors, still do this, right? Many old school urologists still put patients in primary care. Doctors do, very often they do put patients in prophylactic and they’re making that. They’re making everything worse because if that patient has a uti, it’s going to be resistant to that simple antibiotic that you’ve been giving them. So I completely disagree with that. I dislike that practice when I see patients like that. I recommend stopping the antibiotic immediate. And absolutely. If just to start with, after a traumatic injury, it’s known that there’s some gut dysbiosis, and on top of that, you’re adding a daily antibiotic, you’re going to make everything worse.
Speaker B [00:48:19]:
So bowel health is going to be affected because of that. So I do agree. If you insist on taking the antibiotic or you really think what this doctor is recommending is what best for you, those patients should be on a probiotic. So.
Speaker A [00:48:33]:
But it’s strain that matches that probiotic, a strain that matches that antibiotic. So I love that you said that because I never really knew. I’m not a doctor, so I don’t have the right to say any of this stuff. But it just immediately concerned me. The first time someone said, oh, I take a antibiotic every day, I was like, what do you mean? You know, I don’t, I’ve never heard of that before. And then more and more people tell me I’m on a low dose, like Macrobid or like one of those. I’m on it for years because I was having too many UTIs. So my doctor put me on this low dose and I just, you know, just rubs me the wrong way.
Speaker A [00:49:16]:
But again, I’m not here to tell anyone what medications to take. But so interesting. You do not like that.
Speaker B [00:49:24]:
No, because what happens is that if a patient is not seen by a doctor that understands neurogenic bladder and how the microbial that’s going to be in a patient’s urine after a neurotransmitter bladder, they’re going to think the patient has a UTI more often than they really do. So that happens.
Speaker A [00:49:40]:
There’s always bacteria.
Speaker B [00:49:41]:
There’s always going to be bacteria, there’s always going to be white blood cell counts in a urine and a patient that has neurogenic bladder. So very often patients go to their primary care doctors and they order urine samples. Oh, you have a UTI.
Speaker A [00:49:53]:
Boom.
Speaker B [00:49:53]:
So the patient, oh, I had six, seven UTIs last year. When they really, when you really look to see and ask for other symptoms and look at the urine samples, they really did not have a UTI all those times. But, oh, you had too many UTIs. Let’s put you in a prophylactic antibiotic. So that’s usually what happens. But I disagree. I try to encourage my patients to avoid that and discontinue the antibiotics. Many times they listen to me.
Speaker B [00:50:17]:
Sometimes they really think they’re not having many more UTIs after that. But yeah, I don’t agree with that practice.
Speaker A [00:50:24]:
And so when it comes to. You mentioned you had a patient who had a suprapubic but didn’t need one. Right. Because he could straight cath, what is your, I guess, opinion on getting a suprapubic Catheter, like, are they good? Are they not good?
Speaker B [00:50:43]:
They are good for the right patients. They are good for any patient that really cannot catheterize themselves for because they’re a quad or because of their body habitus. It’s hard, woman. Sometimes it’s very hard for women to straight cath themselves. Especially the older they get injured, the harder is for them to learn. Younger SCI women, they do learn very well and they do great with straight catheterization. So for those patients that cannot straight cath for one reason or the other, definitely a suprapubic tube catheter. It’s much better than having an ingrown Foley catheter or just going on a diaper incontinent or using a condom catheter.
Speaker B [00:51:21]:
So, yeah, in any patient that cannot straight cath, I do advocate for suprapubic and I think that those are the best options.
Speaker A [00:51:27]:
Yeah. And what do you. I had a client who could straight calf who was very capable of it, but had built up so much scar tissue from calfing that it became impossible to straight calf and in that case ended up with a suprapubic catheter. So do you think. I don’t know. When I heard that scar tissue thing, I was like, how does that even happen?
Speaker B [00:51:53]:
It’s probably because, I mean, you have to see the technique that they were doing, the strict cat. The type of catheter. You know, if they were lacerating their urethra, every time they put the catheter, the urethra is going to scar. So you need to make sure the patient is doing the technique right, using the right catheters, the right amount of lubrication. Some patients just to go on the fly, they just put the catheter without lubricating, and that can cause those things. So, yeah, it is possible. It’s not impossible. It is possible, but that’s why we need to make sure early on their injury that we educate them on those things to avoid that.
Speaker B [00:52:28]:
But in that case. Yeah. Then the best next is going to be put a suprapubic tube.
Speaker A [00:52:32]:
Yeah. And when it comes to. I had another question about longevity. Now, as the wife of a quadriplegic, I hate this question, right? This. Ow. You know, I heard that we have a lower life expectancy, and I’m curious what the doctor has to say about that. I know that things are getting better, right. With technology and things like that.
Speaker A [00:52:57]:
And as a dietitian, I was very happy to read that renal disease, which used to be a huge Huge issue with spinal cord injury is lower down on the list because we’ve gotten better at it. When it comes to long term outlook for spinal cord injury patients, what are the things that we absolutely need to take care of so that we can have the longest, healthiest life?
Speaker B [00:53:27]:
I’m glad that you asked that because in reality it’s not that just from having a spinal cord injury, it’s not that your life expectancy is less than able bodied persons, but you’re absolutely at risk of higher, for example, cardiovascular disease if you don’t take care of yourself. So yes, they are higher risk of cardiovascular disease which can result in shorter life expectancy. So the first thing is to make sure to monitor your comorbidities. For example, we know that paraplegic or quadriplegics, you lost lean muscle mass and that mass is substituted by adipose tissue. And adipose tissue itself create an inflammatory cascade in your body and increase the risk of cardiovascular disease, arterial disease. So making sure that you monitor your weight, because weight gain is easy when you’re paraplegic or quadriplegic because of inactivity plus loss of lean muscle mass. So those patients are a higher risk. So if on top of that risk you have high cholesterol because you don’t monitor your diet, then that’s going to add up.
Speaker B [00:54:33]:
And yes, you may be at higher risk of having cardiovascular disease and complications. If on top of that you’re not monitoring your blood pressure, you already have arterial disease or at risk of atherosclerosis from the adipose tissue deposition in your body body, and on top of that you have uncontrolled high blood pressure, then that could cause trouble. So that’s also important to monitor your blood sugar. You know, the same adipose tissue deposition in your body is going to lead or put you at higher risk of insulin resistance. So if you don’t monitor your diet and the carbohydrates that you eat and your blood sugar gets out of control, that adds to the risk of comorbidities or long term complications. So I think those are, are pretty much the main things that I would watch that can definitely put this patient in metabolic syndrome or at higher risk of having cardiovascular disease that could lead to a shorter lifespan.
Speaker A [00:55:30]:
Yeah, and I think it’s really, really important to distinguish that it’s not the spinal cord injury that is causing people to become ill. Right. It’s the other things. And so there’s nothing, I mean, last time I checked, there’s nothing to be done really to make your spinal cord injury go away. But there are ways to keep an eye on your cardiovascular health. There are ways to keep track of your blood sugar. Right. I have read that the prevalence of diabetes in the spinal cord injury community is two and a half times higher than that of the general population.
Speaker A [00:56:15]:
And I’m sure that does not really surprise you. And it’s not. And again, it’s not because of the weight in this situation. It’s not because of the weight. It’s because of changes, you know, in carbohydrate metabolism that happen when you are a person living with paralysis. Right.
Speaker B [00:56:34]:
Yeah.
Speaker A [00:56:34]:
And I, that’s why in my program, I always tell people, I’m like, you need to sort of of get on top of these things before you become pre diabetic or before you become diabetic. So eating enough fiber and not cutting carbs, but eating the healthy, complex carbs, because if we’re going to eat enough fiber, we have to eat carbs.
Speaker B [00:56:57]:
That’s where one important thing to mention there, because the weight kind of do matter. Patients, they’re in a wheelchair, they are less active, so they do need to wash their weight. And the problem is that the type of adipose tissue that puts you more at risk of cardiovascular disease, it’s the visceral one, so the middle one. So I know you post a lot about this patient lose this many inches, that’s important because that’s adipose tissue there that’s creating inflammatory cascade in your body and increasing your risk of cardiovascular disease. That’s adipose tissue there that’s making you insulin resistant, so puts your risk of diabetes.
Speaker A [00:57:37]:
Oh, I see what you mean. I see what you mean. So you’re saying the weight actually does contribute to your, your higher chances of diabetes.
Speaker B [00:57:46]:
Yes.
Speaker A [00:57:46]:
Ah, okay. So I mean, yes, that is true.
Speaker B [00:57:51]:
Because patients do patients normally going to lose weight after an injury. But if you don’t monitor what you eat and you start gaining weight and then you cannot form muscle, lean muscle, because you’re paralyzed, then it’s all going to go into your visceral abdomen, right into the middle.
Speaker A [00:58:05]:
And I guess what I was trying to say is more like your diet and your lifestyle and all of that really affects your, you know, your insulin response and all these kinds of things. But yes, it is true. If you, you know, I think there’s a lot of chatter in the, in the nutrition world these days about obesity. And is it a correlation? Is it a causation? You know, does it actually cause diabetes? Or is it your eating habits that are resulting in Both athletes, the same time, you know, that you’re gaining the weight and you are also becoming more insulin resistant. And I think it’s from the medical point of view it like, it is what it is. I try to be real delicate with like the weight and things because it’s such a, it’s an emotional thing, you know, not, not for nothing. A lot of people who are injured, they got injured at the peak of their life, you know, where they were in the best physical shape. Some of my clients have gotten injured doing, you know, I don’t want to say risky, but like doing physical activities that were pushing them to the limits.
Speaker A [00:59:18]:
My husband did a triathlon a week before he was injured. You know what I mean?
Speaker B [00:59:23]:
Yeah.
Speaker A [00:59:24]:
And so at the age of, in his case, 20, 23, almost 24, to be in that great, amazing shape and then to become quadriplegic, lose a ton of weight, right. Which unfortunately mostly is muscle. When you do, I think end up in rehab. So many people tell me, and my husband included the people around them, not just the family, but also the nurses are like, you need to eat, eat, eat, because you lost so much weight. But I think that’s actually short sighted, you know, because they don’t tell them when to stop eating that way, you know, like, oh, I lost a bunch of weight before my, after my injury, so I’m trying to gain it back. And this brings up a very interesting point too. Now bmi. BMI for the general population, for you to be considered obese is 30, right? BMI of 30.
Speaker A [01:00:20]:
After a BMI of, it’s either 25 or 26, you become 25, 25, you become overweight. Now for the SCI population, what do you think about that? There are guidelines. It’s like 22, right?
Speaker B [01:00:35]:
It’s lower. Yes. And the thing is that, that’s one of the things that I’ve been trying since I started working here. I’ve been trying to talk with our local dietitians in my hospital because their BMIs should, their target should be lower. Okay. The calories calculation should be different because their total energy expenditure is going to be lower. Their bmr, their basal metabolic rate, it’s lower. So it is different.
Speaker B [01:01:00]:
So yeah, for, I don’t remember if it was 22 or 23, it probably 22 is the right number. But yeah, it’s lower. The, you’re considered obese at a lower T on a lower bmi.
Speaker A [01:01:09]:
So I don’t, I don’t remember the exact one and I don’t think it’s obesity. I think Instead of a BMI of 25 being considered overweight, they want you to be at a BMI of 20. Now, if anyone is out there doing the math, that’s not a lot of weight, you know, and I think that’s just difficult.
Speaker B [01:01:30]:
Right.
Speaker A [01:01:30]:
I don’t really talk about BMI much in my program because, first of all, most of my clients can’t weigh themselves, so it’s kind of like a moot point. So that’s why I talk about, like, losing inches off the waist, because that is really what. To be honest, that’s really what bothers a lot of.
Speaker B [01:01:46]:
And I think it’s. And that’s. That’s the right thing to do it, because, like you say, it’s very, very hard for these patients to monitor their weight. And really is that visceral mass, that can be problematic. So if they’re going to gain weight, most likely it’s going to be in their abdomen. So I think that measuring waist circumference is the right way to track your weight or track how much fat mass you’re gaining, because we know these patients are not going to get muscle. So if they gain inches, it’s in fat. And that fat is just not good.
Speaker A [01:02:17]:
Yeah, absolutely. And I think, too, it’s an emotional thing for a lot of people, people that I don’t look good. You know, all of us, when we sit down, we have a little tire. I mean, I hope most of us, you know, because you’re supposed to have something there. But for these people who are seated all day, it’s not the same. You don’t get to stand up and then kind of smooth out. Right. And so losing inches off the waist, I mean, there’s no perfect way of telling exactly what it is.
Speaker A [01:02:48]:
I know that it can’t all be fat because people lose so many inches so quickly. Sometimes, like, in a couple of months, I’m convinced it’s poop. That too, yeah. Because so many people only poop once or twice a week, and then I have them going every other or sometimes every day, and they’re losing inches because it’s not just poop, it’s bloat. Right. Skipping meals makes you bloated. All of these kind of, you know, heavy, greasy foods and all that make you bloated. So I think it’s bloating.
Speaker A [01:03:22]:
I think some of it’s fat. I think some of it’s poop. I think it’s just everything is collected. Also lymph, you know, the lymph doesn’t filter as much because you are. We had a lymphatic drainage person come over a few months ago. Sorry, a few years ago. I wish it was a few months. And she worked on my husband and it was just so cool, you know, to see how he looked.
Speaker A [01:03:49]:
He literally looked different after they did the lymphatic drainage because she said, you know, you’re bent like at a 90 degree angle for hours and hours all day. So you do have like fluid accumulation. Like the lymph is not running up and down. So you know, getting into the standing frame, doing stretching, you know, I’m a dietitian, I talk about nutrition. You’re a doctor, you talk about medical stuff. But really this lifestyle stuff is so important, you know, getting adequate sleep. My lord. You know, the cortisol levels in this community are through the roof.
Speaker A [01:04:26]:
Because like you said, when you have someone in rehab, is your house accessible? Where are you going home to? Who is going to help you? Can you drive? Like all of these different things? What has to happen to your job? There are so many things to think about. And even years after, you know, my husband’s injured now, 18, 19, 19 years now, there are things that we have to think about on a regular basis that other families don’t have to think about. You know, you’re a mom, you know how it is when it’s. It’s like a kids event or whatever. My thing is always like, is it accessible? You know, the mental load of this lifestyle is a lot. And I know you know that because, because you deal with this every day. But I think most doctors don’t. And I also think that a lot of people in this community, it just becomes their baseline.
Speaker A [01:05:15]:
It just becomes like, well, this is how it is. And they don’t even realize that they’re so stressed about their bowels or that they’re so anxious about being out and about or whatever it is. You know, I think mental health is a huge, huge part of this journey as well, you know, and it’s interesting because in my program, most people don’t have friends with spinal cord injury. They don’t have peers. They don’t have a place that they can say I’m really bloated and backed up, or like anything having to do with this life. Because I think so many are just trying to live normal. Right. So it’s like they don’t want to talk about that stuff.
Speaker B [01:05:57]:
No. And actually research show it. You look at the literature, there’s been many, many studies just looking at quality of life and community. Reintegration or integration into their workplace after an injury. And when you look at these studies, many times the main reason why patients have poor quality of life or they have not reintegrated into their social groups or reintegrated in the workplace, it’s because of their bowels. They are afraid they’re going to have bowel accidents or they are just so constipated and their bowel movements are so chaotic that it can happen anytime. So they’re afraid of going out with friends and having a bowel bowel accident when they’re out or going to work and having to use the bathroom. So that’s a big stressor for them, and that’s a big limiting factor for individuals living with an SCI to reintegrate it into their social activities or into their workplace.
Speaker B [01:06:52]:
I have patients who don’t go to family gatherings because they are afraid of moving their bowels there. I have patients who don’t go to hotels because they don’t know if they’re going to be able to do their bowel programs in the hotel bathroom. You know, So I have a patient who’s a cauda. He walks, he walks. You would never think he has a spinal cord injury when you see him walking. But his main sequela was bladder and bowel. And this patient, I’m not gonna lie to you, he said, I am sitting in the toilet 14 times a day. 14 times a day, I’m sitting in the toilet 14 times a day.
Speaker B [01:07:27]:
I feel unheard that if I don’t run, I’m gonna go on my pants. So he cannot go out with his kids. Kids because of that. So it’s very, very limiting. And these patients isolate very, very often from their friends, from their family. They don’t return to work because of that. And many times it’s just poor management of their bowels. On the other hand, there are patients that have their bowels under, very well controlled.
Speaker B [01:07:54]:
They are in a great routine. And those patients, nothing stopped them. They go to activities, they work, they go out with their family, they travel all over the world. So you see the two sides of it. And then it’s like, wow, this really is achievable. So that’s why I try to. Support groups are great because it gives patients perspective. They start creating all these stories in their minds, I cannot do that, I cannot do that.
Speaker B [01:08:19]:
How am I going to go there if I’m going to be moving my bowels, blah, blah, blah. But going to these support groups and seeing that it’s really possible, how other People are living their lives with their bowels under control and not allowing their mouths to decide what things they’re going to do and what things they’re going to enjoy in life. It’s. It’s great. It’s incredible.
Speaker A [01:08:36]:
And I just have to say I never knew there was actually research on that.
Speaker B [01:08:41]:
Yeah, there are.
Speaker A [01:08:41]:
Here. It’s what I hear every day. You know, I don’t want to do this, I don’t want to do that. I’m scared of this. Or I’m waking up so early because I want to make sure that I poop before I go this way.
Speaker B [01:08:50]:
Actually, there, there are studies that have. Patients have listed. Listed their bowel care and as more important than like or more a priority. When you ask them why would you like to recover most after the injury, they report the ability to control my bowels over the ability to walk, over the ability to use their upper extremities. So that’s how much I’ve seen those studies. Yeah, that’s how much having control of your bowels actually play a role in the social aspect of these patients.
Speaker A [01:09:22]:
And I gotta say, too, it’s like a really unique issue. Right. I can’t think of any. I mean, I’m sure there’s other health, you know, diagnoses and issues out there that people have that affects their bowels, but I feel like no one really knows this about spinal cord injury. You know, they just think. I think back when I met my husband, I didn’t know anything about spinal cord injury. Nothing. Zero.
Speaker A [01:09:47]:
So, I mean, I’ve learned a lot since then, but to me, it was just like, oh, he can’t walk.
Speaker B [01:09:52]:
Walk.
Speaker A [01:09:53]:
Oh, he was injured. Oh, so he can’t walk. And it was all about the wheelchair and the legs. And what’s funny is the legs have nothing to do with the injury. The legs have nothing. You know, that’s not what I think. Other people see. Other people just see, oh, you know, you can’t walk.
Speaker A [01:10:15]:
But they don’t see all of the hidden, you know, things like being out in the heat, getting dysreflexic or having nerve pain or having spasms. You mentioned Baclofen pump and all that kind of stuff. I will ask you, what do you think is the next frontier for spinal cord injury for recovery?
Speaker B [01:10:38]:
Well, stem cells is there. There’s a lot of research on stem cells and I, I’m hopeful that we’re going to get to the point of starting to have enough scientific evidence to back up stem cells. I know it’s being done right now, but it’s not being done with evidence backing it up on how was the right way to do it, the right amount, the right place to put these stem cells. So I’m very hopeful on this research to try to tell us exactly, okay, this type of stem cells work, put it in this way, this type of cells, you know, so I’m hopeful. I’m stem cells, to be honest. But I think there’s still a long road ahead of that.
Speaker A [01:11:19]:
What do you think of the epidural stimulation?
Speaker B [01:11:21]:
Oh, that’s something that’s also. I haven’t, to be honest, read a whole lot on that recently.
Speaker A [01:11:27]:
I have some clients that have the epidural stem implant and they say it’s life changing. You know, they are C level injuries and they’re able to sit, you know, unassisted now they’re able. They regained a lot of bowel and bladder functioning, some motor stuff, you know, like the quads now who can sort of use their hands better. So the epidural stim, I think it’s in Kentucky that a few people have.
Speaker B [01:11:54]:
Done it, probably under a research study, I would assume.
Speaker A [01:11:58]:
Yes, it’s all under a research study. And there is also the external stim, you know, people who have the external stim for a number of hours and then it lacks.
Speaker B [01:12:09]:
Yeah, I have a patient, yeah, I have a patient who just got one of those stimulators for bladder and bowel control. And what he does, said it has helped with quality of life for him. This is the guy that I was telling you was 14 times in the bathroom. He said that at least now he can adjust the intensity of the stimulation if he’s going out so that he doesn’t feel the urge to go when he’s out. Okay. But when he turns it down or off, he goes back to the same. So let’s say he. I’m going to go out to eat with my family.
Speaker B [01:12:40]:
I just increase the steam to make sure I don’t feel the urge and I don’t feel like I’m going to go and it helps. And so I can go out more now.
Speaker A [01:12:47]:
Oh, interesting. Yeah. The other thing is facilitated electrical stimulation, which my husband had done. He has a few implants. Right. So the implants are in his abdomen. He did this in Cleveland. And basically he has electrodes that are attached to different muscle groups in his body.
Speaker A [01:13:07]:
So in his legs, in his abs, lower back, glutes, and he’s able to control them with an external device. So, you know, 18 years, 19 years actually. Injured. His posture is real off. So it’s funny when we’re sitting somewhere, I’ll be sitting across the room. And I can tell exactly when he turns it on because he sits up really, really straight. And I think that has helped so much maintain a lot of his muscle mass and his legs, because, you know, most quads, they lose so much muscle in their legs, and he hasn’t because the muscles are still being activated. So there’s so much stuff out there, right?
Speaker B [01:13:48]:
There is, yes.
Speaker A [01:13:49]:
Quality of life thing is a lot of it’s kind of invasive. Right. And it requires a certain type of personality to kind of go and do that. I think now, my husband would not go under the knife for those types of long surgeries. But this was years ago, you know, and we’re very glad that he did it. But even simple things, getting your bowel program. Right, getting on the correct medications, seeing a doctor that knows what in the world they’re talking about, you know, because spinal cord injury is really, really different. Right.
Speaker A [01:14:24]:
I think that’s probably our best bet, right? For the immediate, yes.
Speaker B [01:14:29]:
Or the immediate. And I’m hopeful that also more doctors become specialized and that we spread throughout the nation. So I feel like I said, I’m the first one spinal cord injury fellowship trained, board certified in my hospital. I think that we’re going to continue to spread and the same thing we’re going to see in other hospitals. It’s just new doctors reaching out to their communities. I’m coming back home to work, you know, where there’s the need. So I’m hopeful that that’s going to happen because the field is getting more popular and I think we’re having more opportunities for training. So, yeah, I hope so, too, because.
Speaker A [01:15:08]:
There’S a lot of people out there going to see, like you said, your random GI doctor.
Speaker B [01:15:12]:
Yeah. The good thing also is that at least telemedicine has, like, Covid brings something good, and it’s telemedicine. A lot more telemedicine is being done these days that facilitate access to care. So let’s say I have a patient in an area of Florida that has no STI doctor. If he googles me and he finds me, and I’m a Florida licensed physician, I can do telemedicine. Yes. You don’t have the ability to physically examine the patient, but there are many things that you can address in a telemedicine visit without doing a physical exam. So I think that’s one positive thing that Covid brought is the opportunity that more physicians I was not doing any telemedicine before COVID and now I’m doing it.
Speaker B [01:15:51]:
So it’s just created that opportunity for like, if you’re on a state that in your city or in your community, there’s no sci trained docs, but you Google one and you found one in your state that is licensed to practice there and is doing telemedicine that opens the door there for access to care.
Speaker A [01:16:08]:
So I agree. I think it’s been, you know, obviously a huge, huge change. Right. I never used to do, I used to sit in an office in town and now I hang out on the kitchen table and see clients that way. Right. So it’s super interesting. Well, thank you so much, Dr. Joanne Delgado, for joining me today.
Speaker A [01:16:30]:
This was such an informative episode and thank you so much for your time.
Speaker B [01:16:36]:
Well, it was my pleasure. Thank you for the invitation. I was actually very excited about it. It is my first podcast.
Speaker A [01:16:42]:
So yes. Love that.
Speaker B [01:16:45]:
So thank you. Very happy to be able to chat with you and just educate our population out there and just making a difference out there.
Speaker A [01:16:54]:
Absolutely. And you’re doing that every single day. So thank you so much.
Speaker B [01:16:58]:
You’re welcome. You have a very nice day.
Speaker A [01:17:00]:
You too. That’s our episode for today. Thanks for listening. I hope you enjoyed it and that you learned something new. Remember, if you want to lose weight with paralysis, improve your bowel health and feel your best you can. It’s possible you just have to change your eating habits. If you need inspiration on how to get started, check out the paralysis Nutrition Cookbook. 101 recipes to help you lose weight and improve bowel health.
Speaker A [01:17:24]:
The cookbook comes with a bonus 30 day meal plan and is the perfect way to start eating healthier. You can find it online at paralysisnutrition.com cookbook I’ll talk to you again soon.
