Constipation With Epilepsy - Sally-Ann Remnant, ESN, Epilepsy Explained, UK

Meet Sally-Ann Remnant, a clinical nurse specialist in epilepsy who talks to us about her work and study into the impact of constipation upon people with epilepsy; particularly those who also have Intellectual Disability - and indeed how constipation can encourage seizures in some.Watch/listen/read here 👇!

About Sally-Ann Remnant

Sally-Ann Remnant is an Epilepsy Specialist Nurse with over 30 years of hands-on clinical experience. With a Masters in Epileptology from King’s College London, she is an indpendent nurse prescriber and works at both Univeristy Hospital Sussex and Epilepsy Explained (where she is the founder).

Full profile: Sally-Ann-Remnant

Topics mentioned

• epilepsy nursing

• constipation

• intellectual disability

• digestion

• quality of life

• seizures

• Transcript

  Trailer

  00:00 Sally-Ann Remnant

  “So if you can imagine the anxiety of having that constipation or that chronic lethargy from constipation; I mean that in itself may affect seizures.”

  Intro

  00:08 Torie Robinson

  Poo. We don't really bring up issues regarding constipation or the reverse enough. Well today I’m talking to Sally-Ann Remnant, an epilepsy nurse specialising in helping those who have epilepsy and intellectual disability. Sally's great and she'll be telling us about her study into constipation amongst those with epilepsy and intellectual disability and indeed how constipation may encourage epileptic seizures! We talk about how digestive issues are something for nurses and doctors to bring up with people with epilepsy but also vice versa. So if you want to hear more about this sillily taboo subject - which generally isn't given enough attention - and if you haven't already and want to(!) then please do subscribe to the channel and hit that bell for notifications. Together let's improve outreach, epilepsy awareness understanding and research funding. 

  Meet Sally-Ann Remnant

  00:58 Sally-Ann Remnant

  Hi Torie, so my name is Sally-Ann Remnant, otherwise known as Sally, and I am an adult epilepsy nurse specialist and I’m based in Brighton. And I also work for myself - I have a company called Epilepsy Explained - which basically provides myself and some amazing colleagues who are trainers (clinical trainers)/ We teach, well, I’d say, all around the country, but it seems to be mostly the south, all about epilepsy - rescue medications specifically. Because obviously, there’s a huge need in care organisations to know about how to safely administer rescue medications like buccal midazolam. And also, we offer, I do consultations with private patients, sort of around safety and SUDEP and again, teaching clinical teaching, and I’m often asked to do some advisory things - policy writing. And I’m also an executive member of ESNA - since December, which is a privilege. So, ESNA is the Epilepsy Specialist Nurses Association for the UK. And I think my role, actually, which is great, is kind of an international ambassador - to start getting some of our nurse colleagues and clinicians from all over the world to come and join us and benefit from our knowledge, share knowledge, and for us to benefit from theirs. Because, supporting people with epilepsy is not just the UK, you know, it’s very different if you think about other countries - especially more maybe socially deprived, financially deprived, and medically deprived countries. So, that’s my role, as well as getting my finger in lots of other pies.

   02:45 Torie Robinson

  Well, we were actually just talking about having one’s finger in too many pies! Sometimes aren’t we, like… because you’ve got such a passion for what you do. Sally, and I know each other by the way and have done we met in an International League Against Epilepsy conference didn't we… But she… you just do so much and it's important that we kind of focus our energy and everything on fewer and prioritised [things], yes.

  So, and talking of prioritisation, we're going to talk about something which is not spoken of enough and reminds me of the chat - a wonderful Charlotte and I did about sex when you have epilepsy. We're talking about constipation. There you go, put it out there: pooing when you have epilepsy. It's generally a thing that I think homo sapiens tend to do, is pooing, but it's often… well you tell us about tell us about your work to do with poo, and your studies to do with poo, and what you've learned from that and what we can learn from that both clinicians and patients.

  03:42 Sally-Ann Remnant

  Typically, nurses, we're always involved in poo in some way or shape or form (literally), but my interest came when I was doing my… the medical MSc at King's a few years ago, in epileptology. And I was asked, you know, doing the research study “What  are you going to choose?” and I thought “Well, you know, there's so many things!”, and I remember talking to colleagues to say “Well, we still haven't found out whether constipation has any relationship with maybe triggering seizures.”. And I said “Well it's a given we all know that, you know, I’ve spoken to colleagues, so anecdotally, we're all we all realise that there is an aspect that, you know, constipation can trigger off seizures in lots of people that we support - especially people maybe with neurological difficulties or more profound or moderate or profound learning disabilities. So, I asked around a few colleagues just to sort of get a feel of whether it would be relevant and it was all, you know “Yes, someone's got to do it, we've always wanted to do it and no one's ever done it!”. So, my wonderful mentor Lina Nashef (who is the consultant one of the consultants - epileptologist really - at King's College); she was my mentor and she supported me in in sort of doing this research. So would you would you like to know a little bit about the research?

  05:04 Torie Robinson

  Yeah, definitely tell us. Because, as I said, it's something people don't talk about, and we need empirical evidence to back up our supposed claims about pooing and it's link to epilepsy so…

  05:14 Sally-Ann Remnant

  I mean I was very lucky enough to do it this at King's and have the backing of Kings, and I must admit I did really well in my Masters because of this research, and also won the Batemans award for it, and also I won a poster award for the “novel research” (as it was) when we went to the earlier day [sic]… week in Prague a few years back. But… so the nature of the study really was to… we put a focus group to see if it would be of any interest just to see whether this actually is anecdotal, you know, is it worth researching, and it was. And then we put a pilot study together. So, I worked and was close to an epilepsy service in Surrey who cared for and supported people with learning disabilities and predominantly epilepsy. So, I approached them with my research hat and they were really happy for me to go along and to look at the books. There wasn't so much ethics involved because we were looking at retrospective anonymised data. So we managed we looked at - I say “we” the Royal “we” that was me! - I looked at about 63 or 65, I think it was, people with learning disabilities who live there. So, I'll call them patients for now. We had an inclusion and exclusion criteria of… they had to have certain seizure types, they had to have, you know, that guaranteed not non-epileptic attacks or anything like that, or dissociative seizures. So anyway, the ones we had left was about 11 of them, and what we did, we captured data about their seizures and then we captured correlated data (so seizure charts and bowel charts) relating to their constipation. And how we actually diagnosed constipation: we used a theory called Rome III, and it's an assessment process where we identify whether someone's constipated or not. Now, I know people say “Well we should know when we're constipated, you know, it's easy, you know, we don't… we strain or we or we don't go to the toilet and we don't talk about it!”. However, there has to be strict criteria because you can't all be constipated and you can't all not be constipated! So, the kind of things that they look for are if you've if your bowel is infrequently open (sort of less than three times a week). Now, for some people listening to this going “Oh that's normal for me.” but for others it's “Oh my goodness, that's awful!”. And then one of them - just such an example - is if you strain for maybe a quarter of that time and that is in itself, you know, a problem. And also, the other one is if you have hard stools. So, when I say the word “maltesers” to everyone (I’m not talking about the chocolatey variety, I am talking about the “pebbles” that we recognise). If you looked at the Bristol Stool Chart, there's a chart of what's what should your poo look like, which is fun. And I actually got some mugs made for colleagues when I was…

  08:09 Torie Robinson

  Hahaha! Poo mugs! Great!

  08:12 Sally-Ann Remnant

  I loved it. I don’t know where my mug has gone, it’s gone missing I think. Anyway, so we got this data, we correlated, and we found something like 75% of this 11 (I know it's only a small group) actually had an increase in seizures when they were then constipated. So, we then… so we had the evidence that there was some sort of statistical significance that there was a relationship. I mean this is a pilot study and this could be taken further, of course. But also it looked at… it kind of, well let's put a theory out there: why could this happen, you know? Why would seizures increase? Most of these people who we narrowed down into having this relationship between constipation and seizures; they also had temporal lobe epilepsy which is probably known as an autonomic/can be an autonomic reason for behind temporal lobe epilepsy. We were wondering maybe that was something to do with it. But the other sort of thing that stood out a mile, really, 

  was we knew about how constipation, chronic constipation, can affect the way your, you know, the way your bowel moves. So yeah, when you eat something…

  09:19 Torie Robinson

  Or doesn’t move!

  09:21 Sally-Ann Remnant

  It doesn't move or doesn't move. So when you eat or take tablets it takes a while for it to be gastric emptying into the small intestine (so, the small intestine is the massive part but when it's, you know, it's got more surface to absorb, absorb your drugs and also, you know, has to go around those long tubes). But anyway, so basically, the… what we're saying is that constipation that could be caused by drugs or the underlying neurological problem, has had an effect on the motility of the medication, and thus the drug absorption. So, the drug absorption then, would possibly go down, which then makes them vulnerable to seizures. So we didn't look into that bit, so I’m hoping that anyone who listens to this may look into that side and prove that as a point.

  10:08 Torie Robinson

  I hope they may also look into the fact that constipation can be so stressful! Like, so even disregarding potential effects on absorption of antiseizure medications, the stress and literal pain caused by constipation could massively affect a person's likelihood of having a seizure. So I think there are different angles to look at this, right, in potential continuation of this study.

  10:33 Sally-Ann Remnant

  So, I mean, if you've been constipated (I think we all have), and you know you've got to get on with your life and get on with your day, you know that has a knock-on effect of “Oh my god, I don't really want to go out today because I feel terrible.” or “What about if I go to work today or I have to do this presentation today and then suddenly my bowels open?!”,  you know, because it's time and the anxiety of that. So if you can imagine the anxiety of having that constipation or that chronic lethargy from constipation - I mean that in itself may affect seizures. I mean there's nothing… there's no proof out there, but it it's all anecdotal… But there's a few studies waiting to happen, definitely. So yeah, it was… it was really good, and I’m hoping to publish it at some point. It was… it is retrospective data, but it'd be nice to open up the floor to more people getting involved. I’m happy to get involved a little bit with maybe the looking into further studies with constipation and the effects on seizures, but I won the award saying that I’ve basically, identified that constipation is a likely trigger for some people with their seizures. And that's people mainly with maybe neurological problems, functional problems, a bad diet, you know, not having good mobility. Some of the group had cerebral palsy so they couldn't move, they couldn't walk, they're in wheelchairs, and so they had an underlying neurological problem that basically affected how the bowel worked anyway. So they were kind of… it was a given, sadly, that they had this constipation problem. So it was always going to be there and we needed to manage it better so that it didn't affect the seizures. But it did affect seizures in these particular respondents (when I did my research). And I'd obviously been looking around the subject before we started talking just to see if there's been any more research out there and there hasn't been except for this this study in 2015 you'll find it in the Epilepsy & Behavior journal. And basically, it's called “Constipation enhances the propensity to seizure [in pentylenetetrazole-induced seizure models of mice] - so that the risk of increasing seizures in especially drug (particular drug)-induced models in mice. And what they looked at was two groups of mice (and as you probably know mice have a very similar brain structure to humans, same as cats, and so on). One group is obviously like an epileptic mice so they've been drug-induced, had seizures, now they have  perpetual seizures (so they… what we call an epileptic seizures mice seizuring group). They were given loperamide and another drug to cause them constipation, and they were all affected in this group; causing them to have worse seizures when they were constipated. So, there has been a trial, as such, in an animal model, showing you that there is an actual physiological link between being constipated and actually having seizures. So, I think taking my study and maybe looking at this, does give you a little bit of ammunition, a little bit of information to maybe go on and look into this a bit further, which would be brilliant. But there's nothing else out there but maybe we should do some more research.

  13:37 Torie Robinson

  You're making me think of… we discussed this before recording, but there was a case of a gentleman who had Down Syndrome and he has struggled with abilities to communicate effectively and well you continue this story it's an awful, awful story but one where you can certainly learn from.

  13:56 Sally-Ann Remnant

  Yes, I have the paper here actually and I hope you don't mind me sharing. So, it's a bit of a sad, sad paper (reading between the lines). So, this is a lovely gentleman that was in 2018, I think, called Richard Handley, and he had a background of learning disabilities and Down Syndrome. Now, he had chronic constipation. I think he was probably conservatively treated, you know, with laxatives, and if you are if you're using laxatives all the time you can get very much a “lazy bowel”. And they… he had a, like, you know, a very large tummy. So eventually they identified that this was constipation (probably too late), went in had an operation, and then he died after a heart attack (because he inhaled, after the surgery, some of the bowel content or faeces). He vomited it up because obviously with constipation it can affect and you can vomit faeces, actually. And that's what sadly was how he died. So, this is a really sad story because,, you know, he lost his life because of the complications of constipation, and I think very much it was not picked up. It should have been picked up earlier. And this this is a person with Down Syndrome and chronic constipation but this could be someone with epilepsy who has extreme constant or chronic constipation. It’s even more important to make sure that, you know, we're watching bowel care, supporting bowel care, and referring onto the right people. Because,, you know, this can ultimately lead to fatalities such as this case. But more importantly, these people deserve to be, you know, looked after - not just here but you know everywhere else as well. 

  15:37 Torie Robinson

  Be physically comfortable as well as neurologically and psychologically.

  15:42 Sally-Anne Remnant

  I'll tell you a little bit more about constipation generally; I mean, you'd be blown away about the sort of statistics and how it affects us all. So, the cost on the patient and the issue with the patient having constipation but the cost on the NHS, especially in the current climate, we're looking at about £150 million spent. Because people come into hospital and they end up in the wrong department and they cost a lot of money to sort of remedy. Whereas if they'd been treated beforehand, before going into hospital, that would have saved a lot of patient time, patient discomfort, and obviously NHS money. Now, there's over a £100 million just spent on prescribed laxatives and I don't know how many millions are spent over the counter. And I say that because about… most people are too embarrassed, as you said, to talk about constipation, so they don't go to the GP, they might - especially the chaps - they'll go off and either pick up something or get their wives or partners to pick up something over the counter. And if they can't remedy themselves there's only about 25 that will actually then go on to the GP and say “Look, I’ve got a problem.”. So this builds up and builds up and then you can see why people end up in agony thinking they've got some sort of appendicitis or something like that. Or worse, end up in hospital and we find out oh my goodness this was constipation this should have been treated a while ago, you've kind of ignored the signs, or your diet, you know the usual stuff. But what was really interesting is in 2014-15 there was a - this is where the study’s come from - and there was over just under 70,000 people admitted just for constipation! I mean that's… and then so 50,000 of these were unplanned emergencies! That was like 133 people a day coming in with just constipation!

  17:32 Torie Robinson 

  Well, it's interesting you say with “just” constipation but it's never going to be just constipation is it. That is the box that was ticked to come in but there are going to be other things alongside that no doubt that caused the constipation.

  17:43 Sally-Ann Remnant

  I also think when people come into clinic and they bring their questions and I think it's quite important for clinicians to actually have a little box there to say “How are your bowels?” because we never asked that question because it's embarrassing. And, you know, we ask women about periods, you know, because obviously there's a small 10% of women that have seizures brought on by different oestrogen, progesterone levels before periods. But we don't ask about poo because people are going “I’m fine thank you very much, thank you, why should I be talking about poo, what's that to do with ed [sic]?”. So, it's a question that really needs to be brought up. And if the bowel's fine then that's fine, but if you start to pick up these chronic bowel issues and constipation… You know, we're all connected, and don't forget our second brain actually lives in our gut! 

  18:29 Torie Robinson

  Wouldn't it be interesting, actually, if somebody (whether it's the individual with the epilepsy or carers, whoever) when they do a seizure diary, if they could put down how's your tummy at the same time, you know? Do you have regular defecations or, you know, are you bunged up?

  18:45 Sally-Ann Remnant

  When I do teaching, I… it's very much… I’ve got a whole slide on triggers and it's very much in there. And I tell the story about how I kind of, sort of researched it, and then we always ask, when we do our seizure description, there's a box there that “please tell us all about triggers - whether it's they're excited, they're sad, they've been ill, they've had a COVID vaccine, they've had the flu”, you know, and whether they were constipated or whether they're menstruating. So, we have that as a thing to pick up.  Because in this field that I did, this area that I look after, so people with learning disabilities, as you say there's a high population of people learning supposedly neurological difficulties that have epilepsy. So if you've got a neurological difficulty, it doesn't just give you epilepsy it can also give you other things such as, you know, how you process the, you know, bowel movements and things. So, bowels should definitely be on the “Let’s just ask that question.”. Especially as it can't be identified as a trigger now. So, it should be on that.

  19:44 Torie Robinson 

  Yeah, I think that would be great. And again, I’m thinking of people with lack of mobility, of course, like luck of jigging your bits all around, you… it's even just walking really, really helps! So, you're thinking of people who don't have physical mobility that is going to be such an issue, likely, I imagine, and would be really interesting. I don't expect anybody to, you know, give me a poke to tell me, but that is how many people listening to this have bowel issues/have constipation issues, you know, and if you've ever been through that as a clinician or a mum or a dad or brother or sister. Recognise that how that might feel for the person that you love or your patient and think, okay, that on top of the fact that maybe that brings on seizures…

  20:30 Sally-Ann Remnant

  Can we just flip it around? Because, I mean, I’m not embarrassed I’m going to say I have IBS, so I go to the loo a lot (which is not fun, sometimes, when you do plan to go out you know you get a bit nervous and things), but generally, you know, it's not just about constipation, and whether that affects seizures, drug absorption, and so on… But if you are having diarrhoea or having frequent bowel openings, you know, runny frequent bowel openings, then that can maybe affect in just the same way. So, I think if it's any bowel problems, you know treat it as a proper, you know, problem, and get it seen to. So, don't just rely on the algorithm of laxatives - especially laxatives that causes a lazy bowel.

  21:11 Torie Robinson 

  Can be very, yeah, very dangerous.

  21:13 Sally-Ann Remnant

  You know, it needs to be seen by, you know… if it's not working and it's causing problems, you need to see a specialist. And I know King’s, when I was there, were working on this “constipation pathway” to make sure people who came in with that issue were seen by the right people: A) to help people but also to reduce that burden of cost which was unnecessary really, in the UK. I’ll tell you a little story about - you'll love this Torie, I know you. So I worked at King’s, doing this project, and I also learned about a product called Peristeen now what do you think that is when I say Peristeen?

  21:50 Torie Robinson

  Dunno!

  21:51 Sally-Ann Remnant

  You think of a periscope, don't you?!

  21:54 Torie Robinson 

  Oh! Yeah, I should do!

  21:54 Sally-Ann Remnant

  Should do. 

  21:54 Torie Robinson

  Yep, go on. 

  21:55 Sally-Ann Remnant

  I learned an actioned, implemented as this Peristeen product, which is… So, people with severe, maybe neurogenic bowels, who have awful constipation, they can't help themselves, they tried everything, and then they come to… well they came to me at this particular point and I had this product where you inserted it into the rectum, it stayed in the rectum (like, with a little balloon that kind of kept it there) and you gently pumped from a little bag, gently warm water, and it kind of, you did it, sort of, every few days, and it chipped away… I mean you can imagine it…

  22:30 Torie Robinson

  Like a boulder of poo that it's chipping away at…

  22:34 Sally-Ann Remnant

  Oh my god, so if you can imagine, so if you imagine a brick wall, and if you've got a sledge hammer, and you just sort of tapped a little bit here and a little bit there, you're not going to knock down the wall. So you do a little bit more and you do a little bit more and now you've weakened the surface. And then you do a bit more and you do it more, the suddenly “Wahay!” it all goes! And that's what this product was like. And I must admit the patients were extremely happy. And I was so grateful that we had this Peristeen to work on some people. And I think this is where people need to be identified. If they've got chronic constipation they need to be seen and then they need to go through that trial of all the different things that can help them so that they reach the thing that helps them the most. So, it's not bowel irrigation like you would get at a “spa” because that be that can be wonderful but… and it goes higher up in the bowel it's just the rectum. So it kind of… and then it stimulates the bowel to open. So it's been quite effective actually.

  23:35 Torie Robinson

  So, Sally, if anybody is interested in continuing and working with you further on this research project what should they do?

  23:42 Sally-Ann Remnant

  Well, you can give out my NHS mail address, that'd be fantastic. I think what I’m looking forward… I’d be really pleased to advise on someone taking this project further and maybe using some of my data and then maybe co-author. But as you said, I’ve got my finger in too many pies! I don't want to do the whole thing! But if someone wants to take this idea and work with it I do think it's a project that could help a lot of people.

Note: this episode was first released on 10th February 2022