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Bladder, Bowel and Sexual Dysfunction in NMO – Breakout Session – 2018 NMO Patient Day

Dr. Cabahug:

Good afternoon everyone. My name is Doctor Cabahug, I’m a physiatrist from Johns Hopkins slash Kennedy Krieger Institute in Baltimore. Today we’re going to talk about bowel and bladder dysfunction as I mentioned earlier. This is a safe space to ask any questions under the sun. I’ll be using anatomic terms and proper terms. So, we will not shy away from the things you want to discuss or ask questions of. Okay? So, I am open, any questions right now? Yes.

Audience:

Hi, dying in the past. Pelvic floor therapy to help with the bladder situation, but I find that when I have a flare up, it just goes all out the window and it doesn’t even matter that I did that.

Dr. Cabahug:

Okay.

Audience:

So, is there anything else that should be worked on?

Dr. Cabahug:

So, are you referring to bladder dysfunction?

Audience:

Yeah.

Dr. Cabahug:

Okay. So, may I ask some more specific questions? Are you having issues with frequency, urgency or-

Audience:

Yeah, frequency, urgency [inaudible 00:01:11].

Dr. Cabahug:

Okay. All right. Are you on any medications for your frequency and urgency? Okay. When your flare has subsided, those things work again?

Audience:

Yeah.

Dr. Cabahug:

Okay. When you have your flare, when you say things go wrong, is it because you’re incontinent?

Audience:

Yeah. It’s like there was no point in it, doing the pelvic floor because when the flare comes in or anything of that nature. It just goes all out the door and there’s like, all rules are broken.

Dr. Cabahug:

Okay. Yeah. And I think the most important thing right now is, as females, to ensure that we are continent and we are dry and we’re not having accidents. So, typically in my patients who’ve had a flare where there’d be multiple sclerosis or NMO, their symptoms get worse, but as their flare resolves, their symptoms get better. Now, I’m not sure if you’re taking any bladder medications because you can get some bladder medications which will address that, the incontinence. What I am not clear of is what type of bladder you have. I was saying in an earlier lecture, there are two types of bladder. A spastic bladder and a flacid bladder. Our bladder, think of our bladder as a red balloon made out of muscle. When your bladder is full, it stretches to capacity and then your brain senses that it’s full and your brain tells you to go to the bathroom, so you can pee. When you have any insult to your spinal cord, that normal coordination has gone. In a spastic bladder, what happens, because remember your bladder is made out of a muscle, right?

Audience:

We’re laughing at the running water.

Dr. Cabahug:

Yeah. Clue to go to the bathroom. All right. So, in the spastic bladder, what happens is, remember your bladder is made out of a muscle. And what happens when a muscle is always contracting? It gets bigger. The bladder is one muscle that you do not want to get big and thick because if it gets big and thick, the pressure inside the bladder increases. And when the pressure inside the bladder increases, there are a few things that can happen. You leak out and you’re wet, or worst case scenario leak up to your kidneys and that’s what we’re trying to avoid. So, I’m not sure how to answer your question because I am not sure if we’re dealing with a spastic bladder versus the other type of bladder, which has a flacid bladder. Now this a bladder because of where the injury is and I’ll pull up the illustration later.

Dr. Cabahug:

This is the bladder where it does not contract at all. It can fill and fill and fill. Do not worry, your bladder will not pop. I promise you it will not pop, but the pressures will still increase. So, this is where you’ll need to catheterize. Now, I’m very optimistic because you say normally the pelvic floor therapy exercises will work unless you have a flare. So, there is some control there, okay? So again, it’s just a matter of, and I’m so sorry this might not be what you want to hear riding it out, because I really don’t know what type of bladder we’re dealing with right now. Yeah. Okay. Yes, lovely lady and green.

Audience:

I have a scratch on my bladder.

Dr. Cabahug:

Mm-hmm (affirmative).

Audience:

And I’m confident.

Dr. Cabahug:

Mm-hm (affirmative).

Audience:

And I kind of have another question. I am now getting Botox injections in my bladder because I wore a catheter and my bladder was getting so flacid that it was pushing out the catheter.

Dr. Cabahug:

Oh, yeah.

Audience:

So, I mean, medication, nothing stopped the slab. And they told me that they thought that my wearing a catheter over time, I was able to hold less in my bladder. And so, urologists, to me, have one thought in mind about NMO or MS patients. And that is to get a suprapubic catheter, which I think brings on more infections than a Foley catheter.

Dr. Cabahug:

So, actually the rate of infections are comparable for both indwelling Foley catheter and a suprapubic tube, because that’s a tube that’s always in your bladder. Now, the tube does only one thing, it empties your bladder. It does not address the increased overactivity as redundant, but it doesn’t address that overactivity of your bladder wall, your bladder muscle. So, what was your question? I wasn’t clear about your question.

Audience:

It was kind of twofold when you were discussing it with the young lady that a spastic bladder, does that type of patient have more issues over time, as you were discussing as we age. I’m 66.

Dr. Cabahug:

Mm-hm (affirmative).

Audience:

And I’ve had symptoms of NMO since I was 34. So, it’s been a long time. I haven’t been incontinent that long, maybe about what six or seven years, but still I’m just trying to figure out from the advice that I’m getting, where should I go? Who should I believe?

Dr. Cabahug:

So, your urologist, I’m sure, probably did a urodynamic study before he recommended doing a Botox injection to your bladder. A urodynamic study for the benefit of others who aren’t aware, it’s a special type of diagnostic exam where in, we put catheters in your urethra and your anus, which gives us an indirect measurement of the pressures in your bladder. So, if that was done for this lady, that means that the results of the exam showed that either the bladder was no longer compliant or the pressures inside the bladder were high, that you were at risk for getting reflux of urine up to your kidneys. It’s all a matter of pressure. So, if the pressures are high, as I said earlier, you could either leak out or you could leak backwards. Yeah.

Dr. Cabahug:

30 years ago in the spinal cord world where I’ve initially trained, 30 years ago people with spinal cord injury died of kidney problems because nobody recognized how important the bladder is. One of my mantras here is, actually I have two mantras. One, keep the bladder happy. Two, the poop is the root of all evil. And for those with bowel issues, you know what I’m talking about. Yeah. So over time, compliance can decrease, especially if the spasms are not that controlled. I’m sure they probably tried all of the oral medications on you from the anticholinergics, to even the Mirabegron. Do you feel the Botox is working though?

Audience:

This is the second Botox treatment I’ve had. And I do feel that the Botox has been the most successful in regulating the spasticity of my bladder. I don’t like the thought of the Botox and what it puts in your body, but it has been the most successful. Bowel and bladder dysfunctions can bring other things on.

Dr. Cabahug:

Yes.

Audience:

So it has kept me from having other issues like breakouts or anything, so I’m happy with it in that way. And I’m just looking at down the road, is this going to be something consistently I will have to have?

Dr. Cabahug:

As long as the Botox is working for you, I think it’s a good option, really. You only get this injection every six to nine months.

Audience:

Right, mm-hmm (affirmative).

Dr. Cabahug:

You can cut down on the oral medications, which actually wreaks more havoc because of the side effects. A lot of the bladder medications like Ditropan or Oxybutynin, they’re notorious for causing constipation. And some of my older patients, they feel foggy when they’re on the Oxybutynin. So, yes ma’am?

Audience:

Hi. So, I did Botox injections in my bladder for about four years from my incontinence and felt that it worked incredibly. I mean, my urologist that was, and we did that test as well, and at one point I needed to start doing it every four months because my incontinence was coming back and I never went on meds for them. And then we came to an agreement that she was going to give me a little bit of a higher dose and then I had to use a catheter because I couldn’t go at all. So, and that sort of changed my thought process cause I was so nervous about it. And then I landed up three years ago having an emergency appendectomy and some other problems were going on there too. I was so septic that my ovary had to be removed as well as my fallopian tube.

Audience:

And this was all because my white blood count cells were 20,000 and this is as a result of my immunoglobulins being destroyed from the Rituxan. So with that being said, I have not done Botox in my bladder since that surgery because I’m terrified to now. Now, is that something I should be scared of going back? I think it’s just a mental thing for me because I had the appendectomy and I had all that going on. Now I’m on Hizentra IVIG every other week for my immunoglobulins, but I have not had … I just deal with my incontinence. I run to the bathroom or I have accidents, things like that. And now, also, and this is a two part thing, in the last year and a half I’ve now started with bowel issues and gone to gastro. I have a gastro and he basically was telling me it’s mild IBS.

Audience:

So, he’s put me on IB guard, which worked for about a year and a half, I did change my diet. I cut out dairy, things like that, but now it’s starting to get bad again. And now he’s wanting to put me on a medication called Viberzi and I’m just the type of person that I put enough stuff in my body as it is with the Rituxan. And now with the Rituxan, I’ve been on Rituxan 10 years and now what it just started doing with my immunoglobulins. I don’t want to have to take another medication if I don’t have to because I’m on other things. Will the Viberzi work, I guess for me? For my-

Dr. Cabahug:

I am not sure. That’s a bit complicated. If I encountered a patient like you in my clinic, I would have a good talk with the neurologist and the urologist, because there’s always going to be risks and benefits with everything. I mean, if we need to address their bladder again, are we going to revisit trying oral medications? I don’t know if you’ve tried Myrbetriq.

Audience:

I haven’t tried anything [inaudible 00:12:55] other than the Botox, I did it for four years. I think my mental thing is I just don’t want to go back to it because I had that major surgery.

Dr. Cabahug:

Yeah.

Audience:

And everything started happening again from there.

Dr. Cabahug:

Yeah, and then again, if oral medications are something that you are not comfortable with and the next question is, would you try doing Botox at a lower dose? Might not be as effective as what you’ve done before. But again, if you were my patient, I would coordinate with your other physicians.

Dr. Cabahug:

Yes. Yeah.

Dr. Cabahug:

I’m sorry. Any other questions?

Dr. Cabahug:

Yes, ma’am.

Audience:

I was looking at your slides and you have one the autonomic nervous system.

Dr. Cabahug:

Yes.

Audience:

I’ve been told that I … And I’m trying to see what type I am, what category I am. I was told that my autonomic nervous system is that of a spinal cord injury in that I have high and low blood pressure. I’m very much affected by foods that I eat. Like if I eat something heavy in the morning, my blood pressure drops to zero. I mean really drastically.

Dr. Cabahug:

Mm-hmm (affirmative).

Audience:

And I’m wondering when I saw that picture, that’s the first, how can I say visual I’ve seen of an autonomic system and when it goes haywire because of the lesions on the spinal cord, how is that dealt with?

Dr. Cabahug:

Yeah. So, the autonomic nervous system is a very integral part of our control of our body. I call it your automatic nervous system. It takes care of everything that we don’t have to think about it. Bladder, bowel, your lungs, your heart rate, it all falls underneath the autonomic nervous system. A there’s this beautiful input interplay between its components. I know if you recall your fight and flight, that’s the sympathetic. That activates when you have to run away from an enemy. Parasympathetic is your rest and digest. Now, if you have a lesion in your spinal cord and I’m going to be specific, if you have a lesion that is in the T-6 level of your spinal cord. So let’s say T-6 is approximately if you feel your bone over here, that would be around that area. Okay. Any lesion in that area above, I expect that you will develop some sort of dysfunction in your autonomic nervous system.

Dr. Cabahug:

Why? Because they’re really of the sympathetic nervous system. Most of it will exit around that T-1 to T-6 area. So, anything above T-6, I would expect that you may present, not to refer everyone, but you may present with problems with blood pressure. It could be your blood pressure will become too low. That’s what we call orthostatic hypotension. Or it can shoot up very high when you feel pain or when your bladder is too full and you’re backed up to the wazoo. That’s autonomic dysreflexia, that’s a whole other topic. Blood pressure problems, heart rate problems, sweating problems. Some of people just sweat like crazy and then they pass out because they’ve sweated too much.

Audience:

Well it only happened in the lobby. And then after I like started to recover, I stopped sweating altogether.

Dr. Cabahug:

Yeah. That’s one thing or even just breathing, but I expect breathing problems to be people would really higher lesions. Yes. So, to answer your question, any lesion in your spinal cord from NMO, MS, TM, if it’s in that real estate of the spinal cord, I expect some problems that we need to be on top of and monitor.

Dr. Cabahug:

Okay. All right.

Dr. Cabahug:

So bowel and bladder, basically, it’s pretty much the same. You have a spastic and a flacid bowel and bladder. I’m going to jump ahead to … Sorry, I’m not really used to this.

Dr. Cabahug:

A brief anatomy, your spinal cord, this red line here does the demarcates where I expect that you have either a spastic versus a flacid or a lower motor neuron bladder. So, your spinal cord ends in what we call little cone. And from the cone, there are tufts going out that looks like a horse’s tail. That’s the spinal nerves coming out. Any injury that affects that last part of your spinal cord, your cone, which corresponds to what we call S-2, S-4. Sacral nerves S-2, S-4. We expect problems with bowel and bladder function. If it’s above that S-2, S-4 above our demarcation line here. I would expect a more spastic presentation, the hyperactive one. And if it’s below that area, that’s when I would expect a flacid one.

Dr. Cabahug:

The reason I keep on harping on this, because knowing what type of bowel or bladder that you have will help us formulate a bowel program that’s appropriate for you because not all medications that work for a spastic bladder will work for a flacid bladder. Not all medications that works for a spastic bowel, a constipated bowel will work for a flacid bowel, okay? A flacid bowel doesn’t have the reflexes in that area are impaired. So normally, for example, who of you needs to use a suppository or who to have a bowel movement. Okay. So, most likely have an upper motor neuron bowel because you respond to that. If I give a suppository to somebody whose damage to the spinal cord is much lower, they will not respond to the suppository. It’s still going to be there because they don’t have their reflex.

Dr. Cabahug:

So you have to actually dig in and manually extract the poop. Okay? So again, because of this information, then we can set the initial bowel program or bladder program and no one pill fits all. It’s a lot of trial and error until we get our groove. Usually, I always advise basic steps. Fiber, diet, fluid, know your medications. Why? Side effects. Side effects. So, if I know what your medications are in for some of the side effects that are aggravating your already preexisting impairment, then we need to either cut down or change the medication or try to change the timing of the medication that it will be more effective for you so that you’ll have less side effects.

Dr. Cabahug:

So, anyone wants to ask a question about sexual function? And the reason I’m asking because like the first group, we weren’t able to go through that. So, I want to be able to make sure we managed to hit all of the major topics.

Dr. Cabahug:

This is an example of a suprapubic tube. Again, not everyone is a candidate for a suprapubic tube. Usually, I would recommend that for somebody who doesn’t have the hand function to catheterize themselves. If you have an indwelling Foley catheter or a suprapubic tube, what I would recommend is after five years or so, make sure you follow up with your urologist because we have to do surveillance for bladder cancer. Remember the tube is there, it’s not going … it’s just there to empty, it’s not going to address the spasticity or to flaccidity of your bladder, but it can irritate your bladder in a way, because there’s a tube it’s always there.

Dr. Cabahug:

The risk for having UTIs with indwelling Foley catheter and a suprapubic tube are more or less the … I think with the suprapubic tube it’s a little bit better. Because you don’t have to have the in and out when you do the involving Foley, but regardless there is still a risk for UTIs with a suprapubic tube. The intermittent catheterization though is the best in terms of the decreased risk for UTI. But if you have penile or urethral breakdown, or if you start to have pain when they do the intermittent catheterization, we find out that you have a stricture, then we have to choose this. We have to proceed and find another way to empty your bladder safely.

Dr. Cabahug:

So, this is a posterior tibial nerve.

Dr. Cabahug:

Oh, yes ma’am?

Audience:

Is there anybody who is currently in a chair who has found a successful method for doing intermittent cathing? Otherwise, for me to intermittent cath, I’d have to get out of the chair, try to get my pants off. It’s just very difficult. So, I went with the indwelling. Is there anybody who’s had success with self cathing from a chair or their techniques maybe?

Dr. Cabahug:

Usually with males, they’re more successful than females. I know your power chair has the ability to tilt back, but I think it’s kind of hard.

Audience:

Exactly, yeah.

Dr. Cabahug:

We can’t see, some people need special mirrors to see down there.

Audience:

Right and getting your pants off in the manual chair and then back up, it’s hard. I would love to self cath again, I did when I was walking, but kind of stuck now.

Dr. Cabahug:

Yeah. And again, it depends on how much you want to self cath or if you’re willing to allow somebody to help you. And what’s difficult is not all toilets are disabled friendly. Yeah. Yeah. So, it is a challenge. Even with the lipstick catheters that we have right now. But again, the issue is for females getting access to see your urethra, that’s the challenge. And on top of that you have to pull your pants down unless you’re always going to wear a skirt.

Audience:

Right, right, yeah.

Dr. Cabahug:

So unfortunately, I don’t have the right answers for you, but again, some are really motivated to, or I have some patients who do have the suprapubic tube in and then again, it depends on the urologist and it depends on how safe their bladder is. Some of my patients clamped their tubes. There are some people who have catheterizable stoma. This is more common in kids before with spina bifida, where basically they have a stoma here. A connection between your bladder and here, and this is where they catheterize. So, I’m not sure if they can, in some centers, they do it for adults. So, I don’t know if that’s something that you would want to pursue. Yeah.

Dr. Cabahug:

Same thing also with the bowels. Let me jump. I’m trying to give you all of the … So, for people who are really backed up to the wazoo, have tried everything from laxatives to those Amitiza, Linzess, Rostar, Movantik, Neostigmine not really working. Sort of a colostomy, we do this a lot in children. You could have a cecostomy and it’s two ways. It’s either we make a stoma and there’s a tube, and you can give yourself an enema through that tube and it’s either you have a colostomy bag, or if you can sit in the toilet, you can sit in the toilet and empty. You’re just basically giving yourself an enema. So, I just wanted to point out from here, this is the start of your large intestine. Go up, across going down your rectum, your anus. Poop out, right?

Dr. Cabahug:

Another option though … that’s a cecostomy earlier … is called a transanal irrigation system. So, ideally this works best in people with good hand function. This allows you to give yourself an enema discretely in the bathroom. The thing is that it only reaches up to this part of your large intestine, the splenic flexure. You have to have really good documentation for insurance to cover this one. If you are Medicare, and I know in Maryland it’s difficult because it is very expensive, the costs for the supplies for the irrigation system is quite expensive. So, that’s one thing. But again, an option to consider.

Dr. Cabahug:

You have to have special training for this. You have to be trained by a nurse practitioner to give this safely. We have to make sure before you even first use this, that your bowel is completely cleaned out of poop because you run a risk of perforation if you try to give you an enema and you’re still full of poop. But it has been proven to be effective, at least cleaning out this area. So again, that’s one noninvasive option before we go to the more invasive surgical options that I showed earlier, like a colostomy or a cecostomy.

Dr. Cabahug:

Five minutes? I have five minutes left. So, what else do you guys want to ask about?

Audience:

Were are you going to touch on sexual function?

Dr. Cabahug:

Yes, I’ve been waiting for that!

Audience:

I’ll bring it up, can you talk about that?

Dr. Cabahug:

Yes, what do you specifically want to find out?

Audience:

I guess I’m just going to throw it out there. Again, I’ve been diagnosed for 10 years. I did not have any issues in that department of desires, or wanting it or wanting to be sexual. And then two years ago it changed for me.

Dr. Cabahug:

Was it more with a loss of sensation?

Audience:

Loss of sensation and I guess less desire comes with that. I don’t … I guess that follows, but yes, less sensation.

Dr. Cabahug:

Okay. So in a nutshell, anyone with spinal cord dysfunction, especially if they affect the lower spinal cord, we do expect sexual dysfunction. In females, it’s pretty much straight forward because it’s more of a problem with either lubrication or with arousal and orgasm, okay? With men, it’s a little bit more complicated because aside from orgasm, which is a big thing, it’s also a problem with erection and ejaculation. Usually, if you have a lower spinal cord injury in males, they need to use something to help augment the erection, like Viagra. Some men do not have ejaculation, or if they do it’s to retrograde ejaculation. So, if it’s a question about fertility, you need to see a urologist in order to harvest your sperm. They can use electroejaculation for that. For women, we have less problems in terms of it’s not a long list, but there are still significant problems with regards to lubrication and are also.

Dr. Cabahug:

And to top it all off, when women, when we reach menopause, we have this natural decrease in libido, right? So, you are dealing as we grow older, as women with spinal cord dysfunction grows older, it’s not just from the initial insult, but the changes in age or hormonal changes, vaginal dryness. You have to see a urologist to evaluate your genital area to see if perhaps estrogens may help.

Dr. Cabahug:

Now, if it’s a problem with female sexual hypoactive desire disorder. I don’t know if you remembered or came out like the female Viagra pill Flibanserin idea. I can’t remember the generic name, but the brand name is Addyi. It’s FDA approved in 2015. But this is something that you have to talk with your physician. You have to meet the criteria for a diagnosis for it and see if you would be … if the problem is desire. But with sensation, that’s a little bit tricky. Now, for those who have really significant decrease in sensation, I still would recommend involving in intimacy. Masturbation. It might take a little longer, but you will get the excitement or some sensation of excitement. There are some people who have advocated the use of other imagery and stimulation of other areas aside from your genitalia to reach that state of excitation. So, these are things that you could pursue. Don’t be afraid to pursue new things, explore, role reversals, have fun. The more pressure that you put on yourself, the more difficult it is. Sexual function, sexual intimacy is not just limited to sexual intercourse.

Dr. Cabahug:

Yeah?

Audience:

You brought up a very good point because the [inaudible 00:30:39] menopause [inaudible 00:30:39] I know that’s a definite, key part of it.

Dr. Cabahug:

Yeah.

Audience:

So, what were you saying, that I would have to get approved for the-

Dr. Cabahug:

Addyi. You have to be diagnosed to see if you meet the criteria and then … I personally have not prescribed this for any of my patients. I am … Addyi. A-D-D-I-Y-A and it’s used for female sexual hypoactive disorder. I think this is best discussed with your gynecologist.

Audience:

Thank you.

Dr. Cabahug:

Any other questions? And again, if you have any other questions, you can come back to me at the end of the other session. Last one. Or … No?

Audience:

I just had, I guess a comment. I’ve had the InterStim [inaudible 00:31:26] and I wasn’t told when this was first … I mean, I went through the medications and then the cathing, and then I went into the InterStim. And then from there I did the Botox and that didn’t work. Now, I’ve had a bladder augmentation. But nobody told me when I had that InterStim, you cannot have an MRI.

Dr. Cabahug:

Yeah.

Audience:

I think it’s important for patients to know that. That’s a big decision to make if you have NMO and that’s one way to determine whether you’re having an exacerbation. And then when it was removed after it no longer worked, that lead broke off.

Dr. Cabahug:

Oh.

Audience:

And so now, I still can’t have any MRIs. And I think it’s important for patients to realize that … Oh, I’m sorry. Okay, there you go.

Dr. Cabahug:

Thank you for bringing that up. InterStim is a sacral stimulator. It’s actually over the estrogen route. And it’s something that is done by the urologist. Unfortunately, as what this lady pointed out, once you have an InterStim, you can not have any MRIs. However, they’re coming up with an MRI compatible one, I think within the next year but then I heard that same thing last year. So, I’m not sure when they’re exactly releasing it. Yeah. Thank you everyone and if you have other questions, just look for me after this.

 

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