Latest / The STA Clinician Podcast / Ep.301: 'Understanding Stomas – A Guide for Soft Tissue Therapists' with special guest Jenny Jones

Transcript

Ep.301: 'Understanding Stomas – A Guide for Soft Tissue Therapists' with special guest Jenny Jones · The STA Clinician Podcast

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You're listening to the STA Clinician Podcast, connecting clinicians across healthcare.
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Podcast formerly known as the sports therapy association podcast i'm your host
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as always matt phillips and this episode is being recorded live on the sports
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therapy association youtube channel
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and facebook page at eight o'clock uk time on a tuesday,
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So very shortly in this episode, entitled Understanding Stomars,
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a Guide for Soft Tissue Therapists, I will be joined very shortly by my special
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guest, Jenny Jones, a community stoma nurse,
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who will be helping us understand what a stoma is, including a look at the three
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main types and the impact stoma surgery can have on a patient's overall quality of life.
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And most importantly, just giving you some confidence and some understanding.
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So if or rather when somebody does come in with a stoma, then you don't just
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freeze and think, oh my God, I'm going to break them.
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That's what this is about. I'm so excited that we are addressing once again,
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a topic which I'm sure a lot of people will breathe a sigh of relief afterwards
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when they've listened to this and realize it's fine.
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I'm back where I was. I can open the clinic doors on Monday.
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I feel fine. So really looking forward to that.
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Before we get into it, I must just say once again, thank you to my guests last
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week in the episode Therapy Show 2026, only 10 weeks to go, in which I was joined
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by show manager Charlotte Spear and head of marketing Keanu Rodriguez.
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What a great name. And together they gave us a very exciting look at what's
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in store this year in the new rebrand happening after 13 years of Therapy Expo. 13 years.
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And the STA has proudly been there since the very first one in Manchester.
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And we will, of course, be there this year as well. There's not an STA theatre anymore.
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We've got the stand there, but I'll be giving some presentations and we've got
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so much lined up and obviously if you're coming to therapy show it's going to
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take a bit of time to get used to that new name then,
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make sure you do come and say hi at the STA stand especially if you're traveling
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alone we always champion the fact that if you're there you're not quite sure
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then even if you're not an STA member but you're listening to this and then
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come along say hi and and you I'm sure you will meet somebody else who you might
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make a great networking team
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and a companion just to experience the wonderful two days together,
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so yeah that is November the 25th, of course, at the NEC Birmingham.
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Which is Wednesdays, November the 25th, and Thursday, November the 26th.
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And I know a lot of you have already bought a ticket on the basis of last week's
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information that Dr. Laura Mamosley will be speaking.
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I'm doing a live stream, I should say, not in person, but a live stream this year.
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But there's plenty of other reasons that you will hear on the episode to come
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along. So available, as always, on all popular podcast apps.
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And if you want to watch the video, then on the Sports Therapy Association YouTube channel.
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Welcome to people who joined us live just to quickly acknowledge your presence
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Gary Benson founder of the STA is here Gary thanks for joining us hope you're well.
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Who have got Steve Kirby is here Steve has played a wonderful part in helping
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us put tonight's episode and next week's episode together thanks Steve I hope
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you're well and thank you for your support
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and also who else we've got coming in Sir Glenn Murphy MBE is here as well evening all says,
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Sir Glenn Murphy got with my short eyesight the end of your I know it's W6F
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but it really looks like WTF,
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which might not be the best.
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I'm just saying, just speaking my thoughts out loud.
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It looks like Sir Glenn Murphy, MBE, WTF, but that's not it.
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Anyway, evening Sir Glenn, how are you?
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I mean, if you have joined us live, then obviously if you want to ask questions,
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then do feel free to do so. No such thing's a stupid question.
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I can bring it up on the screen.
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As always, these episodes are for you. So if you've got a question or a doubt,
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this is your time, especially with the expert we've got in the house tonight.
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So feel free to ask questions if you wish.
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Right then, let's crack on with tonight's episode, Understanding Stomas,
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a guide for soft tissue therapists. Let's bring up our very special guest, Jenny Jones.
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I'm fine. Thank you for having me. Oh, no, like I said in the introduction, I'm so thrilled.
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And thanks to Steve as well, who's in the room and you and Alana for next week,
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because one of the greatest things about this show is when we do manage to introduce
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a topic to therapists who they don't know much about it.
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And it's one of those topics where they probably fear as soon as they see the
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title thing, oh my God, I know nothing about that.
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Maybe we could start to have a little information about what you do on a daily basis?
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So I am a community East Dome a nurse. So there are four of us in my team.
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We cover Norfolk, excluding Great Yarmouth area.
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The territories kind of vary around the country.
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We manage our own diaries and our days are basically doing home visits.
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We don't have a clinic base. So we see patients throughout the day in their
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own homes and we divide the county into patches for kind of ease.
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We see people who have had new stomas formed. So they will be new patients referred
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to us as they leave hospital.
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We also see patients who have had stomas for many, many years.
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They may have moved into the area. They may not know that we exist or vice versa.
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So basically anybody who has a stoma is under our care if they wish.
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And we never discharge people from our service.
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So once they come under our care, they stay with us. And in the longer term,
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they contact us as and when they have a problem. So I have about a 400 patient,
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caseload, but I'm not actively seeing all those people.
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We speak to everybody at least once a year and the newer patients have a defined
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pathway that we follow. So we give them a lot more support in the early days,
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and as problems arise we visit as often as needed.
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We also go into hospices and nursing homes, anything in the community where
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patients may be with a stoma.
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So we go anywhere we needed really.
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That's amazing. 400. I'm glad they're not actively calling you every day.
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That'd be worse than Gary Benson's phone.
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Not many people beat that. So they're never discharged. That's really interesting.
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So there's always support there, which means I guess you must get like,
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I like to think one of the benefits of careers like yours is you build up a
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relationship with the people and you get to know them over a long period of time.
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And there must be, I'm sure, challenges we'll hear about later on.
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There must be very rewarding as well.
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That's one of the nicest things about this job because we do because we are
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the specialist with stoma it's a very narrow niche but it's got depth to it
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so the patients will always see my patients in my area will always see me,
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they'll only see one of my colleagues if i'm on holiday or i'm away when they
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call so we kind of have that we build that rapport and that relationship with them and their families,
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and particularly if they're younger people we often they stay with us throughout
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their life, the big milestones in their life, you know, graduations,
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weddings, retirements, you know, from, from kind of very young to very elderly.
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So I think often with any healthcare professional.
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That continuity is really important. And I think it's really important for the
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patients because they don't have to start from scratch when they're ringing
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us and saying what the issue is.
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They're not seeing a different practitioner every time. So it gives them that
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continuity, which I think builds that trust and that relationship.
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That's massive. Yeah, that's so beautiful to hear because that's so often the
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problem, isn't it, where you go and see,
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not all cases, but where you go and see a healthcare professional and it's like
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oh i don't know you now tell her what seems to be the problem and it's like
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seriously how many times have i haven't you got my notes and it's like such
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a problem so it's lovely to hear,
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for you that you managed to avoid that and help people in that way i suppose we should start really
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with let's for people listening to podcast if you're sitting there thinking
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i think i know what a stoma is someone told me they had one once if you if you
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want we're going to share some images on the youtube and i think they might
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be useful to you so if you listen to podcast and you want to stop now and go
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over to the Sports Therapy Association YouTube channel,
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then you'll see a few images that we're going to put up to talk about it.
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I'm going to start that now.
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So we've got something on the screen now, which is showing various stomas.
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We're going to get into the different types later on. But I suppose we should
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start really, Jenny, if you'd be so kind, with a definition.
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What makes a stoma a stoma? And where does the term come from?
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So a stoma is essentially a surgically created diversion.
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And it's either fecally diversion or a urinary diversion.
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And the word stoma originates from the Greek language, so it means...
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Mouth or opening so it's os the word os is where stoma originates from,
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they were first well documented apparently back in the 1700s very commonly battlefield
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injuries obviously much less so now so it's basically a piece of bowel that
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is brought to the surface of the abdomen,
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and it will then divert either urine or feces into a bag,
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patients will often have them for a number of reasons.
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The most common one, as I'm sure your audience probably realises, cancer.
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So we see bowel cancers, ovarian cancers, bladder cancers.
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I think the second most common reason we often see are things like inflammatory
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bowel disease, so Crohn's and ulcerative colitis.
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And then you have often our babies who have stomas will have congenital malformations,
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functional bowel disease, So it's slow transit where people are prone to extreme
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constipation over many years.
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They may have a stoma for functional bowel problems.
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And we have a smaller group of people who have spinal injuries,
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MS, who, again, it becomes a functional bowel issue, but they will sometimes have stomas as well.
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But mainly cancer and inflammatory bowel disease are the two diagnoses we see mostly.
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And that's going to lead really nicely, I think, into next week where it was
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World Sepsis Month, but the 13th of September was the official World Sepsis Day.
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I'm sure we'll be dipping into that a little bit as well because I think sepsis,
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as far as I know in my limited information, can involve stoma as well as part
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of looking after tissue and everything.
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So I'm sure we're going to be with Alana Forrester next week discussing post-intensive
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care syndrome, abbreviated to PICS.
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But yeah so give our listeners an idea then how many you've mentioned quite
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a large selection of reasons for it how many people more or less in the uk.
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Have got stomas various types it's about 200 000 it's,
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quite a lot so we always say to people if you're walking around testigos and
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everyone got stopped then you guarantee because when people have a stoma formed
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unless they have family that have one or they know someone it can be very isolating,
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so i think people are often quite surprised when they see the numbers and we've
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had in the past coffee mornings for our patients,
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and we've had people turn up who've bumped into a neighbour around the corner
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and they've never realised each other have stomas so,
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some people don't want that that kind of peer support but some people really
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appreciate it and feel much less isolated but it's about 200,000 the most The
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common stoma is probably a colostomy, a large bowel stoma, followed by agliostomies.
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And then the bladder stomas, the urostomies, kind of are a smaller group of people.
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So I guess it's probably, thinking of our listeners, it would be really nice,
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for somebody who hasn't got a stoma to get to a massage therapist or sports
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therapist or any healthcare professional who's going to put their hands on who's
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kind of a little bit versed in this and understands it and hasn't got a fear
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of it and has got an awareness of it. just to normalise it. I guess it's one of those things.
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A lot of it is the adjustment. So when people leave hospital,
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a new patient with a new stoma, they don't leave hospital until they can practically
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manage the pouch change themselves. They're trained by the in-hospital stoma team.
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Or if they're unable to, for whatever reason, a sparrows might help them or carers.
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But once they're home, it's a little bit like when you're learning to drive,
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you pass your test and then you learn to drive. This is the same.
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You learn have to look after your stoma and then you go home and then you start
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recovering and of course they're recovering from huge surgery and a diagnosis of cancer,
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and many people are facing more treatment so chemotherapy radiotherapy it's,
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it's it's a lot it's a lot for people to cope with and it's a very steep learning curve,
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so we often go in we go in at least four times in the first six weeks more if
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we need to we're very clear to our patients contact us there is no such thing as a silly question.
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And often that physical adjustment where they're learning to do the pouch change
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is often the thing that happens the quickest but then they have the social adjustment
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so when they're going out,
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because they're going out as a new person almost i've got this now what happens
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you know what if there's a problem so it's building that confidence and of course
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the psychological adjustments so the body image how do i see myself how do my family see me my spouse,
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and if they are someone for whom sports or massage is a big part of their life
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and they want to return to that,
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having someone put hands on them when they've now got this pouch on their abdomen
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can be a really big hurdle so I think having an understanding of what that might
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mean to that person and how to navigate around it will help put them at their ease I think.
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Yeah, no, I can imagine that. It'd be absolutely marvellous to have somebody,
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who isn't shocked and doesn't kind of show that face of, oh, that's interesting.
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And that worry, because as we'll see later on, you really don't need to have
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that worry. And you mentioned people of different ages. So is there a more common age or?
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I think probably the older population, so 60 plus.
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It's varying. We're now seeing much more cancers in the 40 and 50 age group, which is quite a worry.
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But probably the older generation, I think. And with each generation,
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again, we have to assess each individual on their own merit.
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But you get the older generation perhaps have a different viewpoint about privacy and dignity.
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I have patients for whom their spouse has never seen their stoma and will never see their stoma.
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And then a different age group, perhaps particularly the younger people,
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might be more open. There's a lot on social media now.
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There's some kind of people in the public eye with stomas who have done an awful
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lot to raise the profile.
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And even if people don't want to engage in that completely, they can observe
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what's happening and it maybe makes them feel a bit less isolated and it normalizes it,
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you know, that people, once they've recovered from the surgery and any follow-on
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treatment they might have, we very much try and encourage people that you can
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live your life with a stoma.
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This should not stop you from doing anything.
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You might do things differently, but you should still be able to live your life
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and have a quality of life.
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That's great. Really interesting. Thank you. Thank you for sharing that.
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I'm just out of curiosity, is there any suggestions as to why the age is coming
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down slightly or would that just be speculation?
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Well, I went to a really interesting study day in Birmingham in July about,
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it was called gut feelings.
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And one of the first speakers was a really interesting guy called Dr.
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James Kinross. He's a surgeon and he talked about the gut microbiome and it was fascinating.
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And he talks a lot about the gut microbiome and the environment and the changes
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so for instance you know we might sit down and eat,
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meat potatoes and veg but it's not the same meat potatoes and veg that our grandparents
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ate and he talked a lot about the impact of our environment and our food choices
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on our gut microbiome and the impact of that so,
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I think there's some thoughts about that being a factor and there's a lot of
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research going on And in regards to that, I think he's written a fantastic book.
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That goes into huge depth.
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I could have listened to him all day. But yeah, there's some thoughts that there's a link there.
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That's really interesting. And yeah, we'll put some links into the show notes
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about that. And we've had a couple of episodes on that very topic.
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So we'll make sure they're linked in if you're listening to that.
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Before we look at some of the different types, because we need to break it down.
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I'm just conscious there's a few comments here. Let's see if you've got some
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questions. If you are listening live, then take advantage of the fact you've
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given up your time to join live.
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And I will share some of these questions up on the screen. So Gary Benson,
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founder of the STA, has said here, my late dad had a stoma, had bowel cancer
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and struggled initially, but got used to it.
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Yeah, I guess the struggle must, I think, first of all, I suppose you have to
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accept it as an individual thing.
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And some people, if they choose that they don't want it to be seen by anybody,
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that's their right, isn't it?
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It's up to whether it suits them. But you must see a lot of variance on how
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much people struggle with it.
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And definitely I think it some of it depends on why they're having it and I
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think you know if any of us sit here now without a stoma and we're well and healthy hopefully,
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what do I think now about if I had a stoma but if you have a stoma because you
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have cancer or Crohn's disease your perspective changes and I know certainly with,
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the inflammatory bowel disease the quality of life that people have prior to
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that stoma formation can be really poor these people do not leave the house
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because they daren't they they go into the toilet 20 30 times a day if not more,
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so and these are often people in their teens their 20s and they're missing all
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the major lifestones they're all the major milestones they're not socializing
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they're not meeting friends they're not going out on dates and,
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and even working sometimes so certainly some of my patients in that age bracket for that reason,
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this has given them their life back.
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For patients who have cancer...
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Then often it's a case of the choice was presented to them as it's this or,
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you know, you might not make it. It can be quite stark.
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But people often cope better than they think they will. And what we tend to
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stress in the early days is you're recovering from major surgery,
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which is a huge undertaking.
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You're recovering from the diagnosis, often because of the very much needed
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quick pathway from diagnosis to treatment.
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They don't have time to really process what's happening so sometimes when they
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get home and they physically start to recover that's when the emotions often
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come to the surface and that's when our kind of frequent,
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visits and particularly the fact that it's the same person every time and we're
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building that relationship,
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we can help them navigate it because they get a mixture of feelings they can be angry they can be.
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Devastated they can or sometimes they're fine and they don't always know how
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to navigate through that and so we can often say that you know how you're feeling
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is how you're feeling but we can help them process it,
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as part of our service we have a counselling service which was set up probably about four years ago now,
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because people would sometimes go to counsellors and they would say yeah it's
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great but they don't have a stoma they don't know what it's like so our psychotherapists
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are trained in stoma care
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so they know what a stoma is they know what it means and the impact so we are
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very lucky to have that service that we can refer people into for that additional
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support should they need it,
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that's fantastic so it's it's great that you've got people like yourself on
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the front line being able to offer these,
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and this service especially with cutbacks and things like that i imagine like
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everywhere you could do with something like matrix where you kind of reproduce
19:49
yourself into 20 view i'm sure that's probably happening but it's amazing that
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that service is still out there so.
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Steve has shares with us. Hey, Steve, how are you doing? Steve says, hi, Matt.
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I had sepsis of the colon 19 months ago, major surgery and steady recovery.
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Jenny is so right. Learning and confidence, so right. I think determination to get back is so right.
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Yeah, I guess that's your job, isn't it? Trying to help people regain that confidence.
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Yeah, it's trying to, people feel their identity is really affected.
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So, you know, you've got that psychological impact where they're not who they
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were before the surgery, before the cancer, or whatever the underlying diagnosis is.
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Part of our role is to help them still see that that's them.
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So we will see people who, even in the first few weeks, particularly if they're
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very active and are very independent, they get very frustrated because they
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cannot do what they want to do. And it's not the stoma stopping them.
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It's the fact they've had major surgery. And often it can take anything up to
20:45
six months to a year to really fully recover.
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And I always say, you know, recovery isn't linear. It's very much ebbs and flows.
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And you'll have I try to avoid saying good days and bad days I tend to say you
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know you might have a day where you have more energy and more stamina and you
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might do a bit more and then you may have to rest the next day and we try to
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really emphasize the importance of rest,
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but people's minds always recover quicker than their bodies are then particularly
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active so again we try and I had a chap this week that I saw who absolutely
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loves his garden and his surgery happened very quickly so he didn't get finished what he wanted,
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and so now he's quite frustrated but it's okay go out with your prune with your pruners you can prune,
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it's not going to pull on your abdomen at this point but you've got two strapping
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sons and two strapping grandsons so you go out the clipboard and a list and you delegate
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and you still get things done so it's helping people see that they can still
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do things but it might just be differently for a while,
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and they can slowly then get themselves back.
21:48
Amazing. Yeah. True person-centered care. Right. Let's get into the anatomy
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of it a little bit. So again, people listen to the podcast and you want to see
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some visuals for this, then you may well want to watch this on YouTube.
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You don't have to, but I'm just letting you know that we are putting some images up.
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So a lot of people have probably heard of the word colostomy and colostomy bag.
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For some reason, maybe they're more common. I'll ask you about that in a sec.
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It seems to be more in our language or maybe it's on TV more.
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It seems to be there more, but there are other types, aren't there?
22:17
So I wonder whether on the screen now we've got the picture of the colostomy,
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but before we mention that, could you mention the other types and how generally they differ?
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So the colostomy that you can see is a large bowel soma.
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You've got an ileostomy, which is from the ileum, which is small bowel soma.
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And we've got a urostomy, which is basically a conduit to replace the bladder.
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And that is formed from a piece of the small bowel.
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And is it that colostomies are the most kind of widely recognised or the most common?
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I think they're the most, it's quite tight between ileostomies and colostomies,
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but I think they're slightly higher in numbers maybe that's why people are more familiar with them,
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but yeah so they're formed from a piece of the small bowel so the diagram which
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is on my left you've got the got the ascending colon which is on the the right,
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of the abdomen and then it loops across horizontally which is the transverse
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colon and then the descending colon heads down towards of the rectum,
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most people will have a stoma formed from the descending colon but we do sometimes
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see stomas formed from the transverse which is the kind of horizontal piece of bowel,
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they're normally a little bit bigger because it's a large bowel and people who
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have these types of stomas can often eat and drink build back up to what is a normal diet for them.
23:42
Okay that's so interesting and i imagine if people are i mean a lot of our our
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listeners will know obviously the colon and now they're probably putting one
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and one together and realizing oh colostomy that's where the position is at the end of the colon
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so it'll make sense to them and it means if someone does come in and they have
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got a colostomy then you recognize which side of the body it's going to be on
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and even now you're kind of making it easy for yourself to form that alliance
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and have less of a worried look on your face so,
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and when we talk about output for example and the outputs differ what's the
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output like on a colostomy what are they what are you expecting
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it's more of a soft stool so the one of the main jobs of the colon is to absorb
24:19
water so as the digested food travels through the bowel,
24:23
you get water absorbed which is what then forms that firm stool that we're all familiar with,
24:28
so depending again on where in the large bowel the stoma is,
24:32
you should expect a soft stool,
24:35
patients with colostomies can get constipated but that can happen.
24:39
If the bowel is, if it's the transverse bowel that's been used,
24:44
not so much water will have been absorbed. So sometimes we see a bit more of
24:47
a looser output and these patients can have kind of a bit more of a variance in consistency.
24:54
And what is the kind of average daily amount of an output then with a colostomy?
25:00
So patients with a colostomy will use what we call a closed pouch.
25:04
So the pouch attaches to her abdomen with a sticky back and it doesn't have
25:10
a tap or a drainage at the bottom. It is completely intact.
25:14
Bag most people with a colostomy will change their bag up to three times a day
25:19
but most people usually about twice,
25:22
if people have had a fairly consistent bowel habit prior to any of their treatment
25:28
that tends to settle back down into that if people have had irritable bowel
25:33
in the past they might find they still have some degree of that,
25:36
but normally it's a couple of times a day usually okay i think that's interesting
25:40
because it'll help people understand that between the the three types we're
25:43
going to go through okay so colostomy probably familiar and the i would have
25:48
said ileostomy ileostomy tomato tomato i don't know,
25:51
yeah either or but how does uh how does that differ then we've got a picture
25:54
up on the screen for people who like the visuals but how does that differ from
25:56
the color this is a smaller.
25:59
Stoma because it's the small bowel colostomies are usually on the left hand
26:04
side of the abdomen in the kind of lower quadrant
26:07
ileostomies are always on the right hand side most of the time occasionally
26:11
depending on anatomy and surgery they might differ but for the most part if
26:17
it's a right hand side abdomen stoma it will be an ileostomy or a urostomy,
26:22
and these are smaller and ideally,
26:25
they should protrude a bit because the output's always looser so these patients have
26:30
fairly constant kind of toothpaste porogy type consistency it can vary between
26:35
that and water so a slightly spouted stoma means that the output comes out into the bag better
26:42
but we often see a real variance in terms of presentation but,
26:46
a lot of the accessories and the pouches we use the different styles,
26:51
and types of bags allow us to create that kind of environment where the stoma
26:56
might protrude a bit more if we need it to but,
26:59
they're usually about 25 millimeters approximately once the initial swelling's
27:02
gone down and they're always bright pink like that any stoma will be bright
27:07
pink because the bowel has a really good blood supply.
27:10
So we like to see that bright colour and that's normal.
27:15
Okay, very interesting. So many questions, but I want to get through the three
27:19
types. So on the screen, we're just going to change it now to the urostomy.
27:22
And that differs in what sense?
27:25
So the urostomy is where we're diverting the urine.
27:29
So I think in this picture, you can see that on the right hand side on the torso,
27:35
you've got your two kidneys and then your ureters, which would normally lead to the bladder.
27:40
The bladder in this case has been removed and a piece of small bowel has been resected,
27:46
and basically creates a new conduit and that's brought through to the surface
27:49
of the abdomen so it looks quite similar to an ileostomy and it's on the right
27:53
hand side it might be slightly higher up but it basically just acts more as
27:58
a mini bladder than a bowel in this situation,
28:01
it's so simple and it's broken down and this is all finally so many therapists
28:06
out there probably thinking yes i know this is my level three anatomy training
28:09
this all make so much sense now with all the names which they had to learn and
28:12
probably never thought again since but
28:14
yeah it's wonderfully breaking this down and i think it normalizes it we can
28:17
understand it's so simple really what's going on,
28:21
amazing right so moving on then to don't forget people i've got questions here
28:25
so you're gonna have to jump in if you've got questions if you're joining us live but,
28:29
in each of these cases if it does differ somebody has come to see you.
28:34
I mean we could even go into how could we make do you think there is a need
28:39
or it's worth mentioning something on websites or on forms to normalize it and
28:45
let people know that they,
28:47
if they do need some soft tissue therapy of some form that this is going to
28:50
be a friendly place where people aren't going to be shot by by a stone or something.
28:56
I think awareness is good. I know that places like B&Q, for instance,
29:01
apparently are adapting their bathrooms to put shelving in.
29:05
So people who have stomas have somewhere to put their kit.
29:08
So a lot of places now are becoming a little bit more mindful.
29:13
Patients often use the accessible toilets because they have a bit more space and privacy.
29:19
But I think, yeah, I think if people see that information, they just,
29:25
they just they just know that that that place understands perhaps what a stoma
29:29
is because lots of people if they don't know someone with one they don't even
29:32
know what one is and that's that's okay but i think for the,
29:36
so the people that don't need to worry about it will just pass that information
29:39
by but the people that for whom it might resonate it would be hopefully quite
29:44
encouraging and and quite sensitive,
29:47
that's a that's a really great example just something so as simple as having
29:50
a shelf in there could make a world of difference.
29:53
So even that, having that in your bathroom, which is obviously easily done,
29:58
and you could add something stoma-friendly or something to your website just
30:02
to start normalizing it and put the word out there more. That's really good.
30:07
The other thing I wanted to check is just to give our listeners an idea.
30:10
Let's imagine you have been wonderfully inclusive and somebody's come to see
30:14
you and they trust you and they've seen your website and that,
30:18
for the soft tissue therapist who may be working around the abdominal area,
30:23
what would the skin around a stoma actually look like if there is a should look like?
30:30
The skin around the stoma will obviously be under the bag, but we very much
30:35
emphasize skin health as part of our role because years and years ago before
30:39
the barriers became more innovative and skin optimizing,
30:44
I think I've got patients who've
30:45
had stomas for so long they remember the barriers being made of rubber,
30:48
and their skin was constantly sore so there's been some myths where
30:53
people expect a bit of sore skin it's part of having a stoma but we very much
30:57
try and try and encourage that that's not the thinking we have a solution for
31:01
any problem that you might have we have so much
31:04
choice in terms of how we treat skin but,
31:07
largely we tell people the skin around their stoma should look like the skin,
31:11
on the rest of their body if it's healthy,
31:13
and that's that's not something we like to compromise on we want that person to be comfortable.
31:18
For their therapists, they probably wouldn't see, obviously the stoma would
31:23
be covered with the bag and the barriers probably about a hand size around that stoma.
31:29
But there shouldn't be any redness visible at all.
31:33
Okay. So if they do see something around the bag, is it worth saying something
31:37
then or having a conversation?
31:39
I guess they could, because often I might say, this looks a little bit red.
31:43
Have you noticed it? Because people sometimes, it might be a bit uncomfortable,
31:47
but it might look fine or vice versa. It might be red, but it might feel okay.
31:52
So it could be, you know, I guess part of the therapist's job is to observe
31:56
and notice both kind of and bring that information to the client's attention really.
32:02
Yeah, I'm just wondering, like, because I don't know to what extent all people
32:07
with stomas are aware of this already and whether they're really educated.
32:10
But I like to think that a massage therapist so many times if they do see something
32:14
even if it's out of the scope obviously they could just mention it could make
32:17
all the difference between saying you might want to go and check that out with your
32:20
local clinical stoma nurse or something or absolutely and they should they should
32:24
know they should know who their stoma nurse is but
32:27
you know for any therapists that wanted our information
32:30
then because we have we have patients who
32:32
we don't know they're there they don't know we're here I think the community
32:35
service in norfolk has been around for about 15 16 years,
32:39
so there are patients who've had their stomas longer than that,
32:42
who have kind of been lost a little bit,
32:44
so you know in gp practices we try and get a little poster up with our information.
32:51
The problem with the job we do is that you know it's such a big multidisciplinary
32:56
team we've all got our roles to play and we all work together but we don't always
33:01
know each other are there so often it's having that information available So...
33:07
And I guess, again, if the therapists perhaps saw a mole that they thought looked
33:10
a bit suspicious, they might bring it to the attention of the client.
33:13
So there's no harm in mentioning perhaps skin that looks a bit aggravated at the edge of the pouch.
33:21
If they feel they've got that relationship with the client to speak up.
33:25
That's really interesting. Yeah. I mean, generally, therapists,
33:30
massage therapists, sports therapists, they're on top of moles.
33:33
They've done that time and time again. That was the one thing that was in their training.
33:36
But it's interesting if they see something around the pouch they might think
33:39
oh no that's probably something part of it i'm not going to mention that i don't
33:41
want to draw attention to the skin around the pouch but i just like to think that,
33:45
it's again it's normalizing it if you do see something you'd normally flag and
33:49
mention to your patient then do it because otherwise it's almost a form of diagnostic
33:53
over shadowing isn't it you see something and you presume oh that's probably
33:55
something to do with the stoma i won't mention it when really it's not you know
33:58
you could be identifying something which,
34:00
and in terms of sensitivity and touch again should it just be Do you have to
34:05
be wary around the area or what would the advice be?
34:09
Potentially, because I know that sometimes after a major surgery,
34:13
the sensory nerves can be impacted for quite some time and they take quite a
34:18
long time to settle down.
34:19
So people might not have pain, but they might have altered sensation.
34:24
But again, I suspect that would hopefully be part of the prep questioning.
34:29
Is there anywhere that you don't want me to touch or anywhere that feels different?
34:33
The stomas themselves have no nerve endings the bowel has no nerve endings so,
34:38
you cannot hurt it there's no pain there as such and if there's any if the therapist
34:44
were massaging around the abdomen and it might be that that movement pulls the
34:48
pouch a bit if that created some soreness and that might be a reason to,
34:53
think well what's going on underneath have you spoken to your stoma nurse that
34:56
seemed a bit uncomfortable that kind of approach.
34:59
That's really good. That's really great advice. Because again,
35:02
I mean, I guess that the answer to all of these questions is just ask your patient,
35:06
ask your client, how does that feel? Do you want me to do this?
35:10
And they'll tell you, give them
35:11
permission to actually tell you what they want, I guess, all the time.
35:16
And I imagine there's probably variance as well. Some people might not be in
35:18
their journey ready to have someone go too close to it.
35:21
And some people might actually desire that and love the idea of someone treating
35:24
them just like a normal, you know, the normal human being they are,
35:27
rather than kind of stigmatizing it. So really good, really great advice.
35:32
Cool. Any questions, people? Make sure they come in.
35:37
So moving beyond the anatomy, how are we? 840, that's great.
35:40
Moving beyond the anatomy, you kind of mentioned before the emotional and social
35:43
adjustment of people coming into terms with the stoma.
35:48
I guess hands-on therapy, the more research we do, the more we realize that
35:53
it's the power of like the environment,
35:56
and just feeling at ease can have a massive effect on a person.
35:59
As well-being and massage may help people who are going through something with
36:03
this is it something which is encouraged to people who are struggling psychologically
36:08
to get used to this new adjustment,
36:11
what massage having yeah massage hands-on treatment if that's the sort of thing
36:14
they like just giving them permission to yeah go and get a massage i mean we
36:17
always try and find out what our patients are interested in you know who they were before the surgery,
36:22
what do they do for a living what are their hobbies what do they like doing
36:25
in their spare time so i think we would And we would encourage that journey back to that.
36:31
And again, it's often increments. So if they have, for instance,
36:34
if a patient's going out for the first time.
36:37
Depending on where they live I'll often suggest you know go somewhere that you
36:40
know you know you've got to set yourself up to win here so,
36:44
you might go out to the local garden centre because you know where the toilets
36:47
are and before you leave the house you put a new pouch on so you know you're
36:51
going out with a clean stoma bag,
36:53
and then you build in more checks so you get to the garden centre and you nip
36:57
to the loo because that's what lots of people do,
36:59
and you check it and it's okay so we often suggest people put more checks in
37:03
in the early days to give them a sense of control over a time when their life
37:07
feels very out of control
37:09
and we also say to them do you know if you're there for half an hour and you
37:12
think i can't do this i've got to go home you come home you still went out,
37:16
even if you get in the car and drive around the block for 10 minutes you've
37:18
still been out so it's trying to help them reframe perhaps negative experiences,
37:24
because the worst thing that can happen to someone with a stoma is they have
37:27
a leak when they're out that is devastating it causes a huge loss of confidence,
37:33
so we've just got to kind of almost potentially face the worst case scenario
37:37
with them and know that they can come out the other side and each day they have that stoma
37:42
they're building experience they're building time with it they're learning what's
37:46
normal what's not what do I worry about what don't I worry about,
37:50
but until they've really had a whole
37:51
year with their stoma through all the seasons all the big food events.
37:56
What can I eat here and what can I have at Christmas you know until they've
37:59
got through that time frame then they will look back and they think yeah you
38:04
know I worried about that more but you can't fast forward for them you just
38:08
got to try and support them through it really.
38:11
Amazing. I guess for some of the part of that journey at the right point at
38:16
the right time, we take for granted the act of just taking your clothes off
38:21
in front of a stranger and lying on a couch and letting them touch you.
38:24
But it is something which does help a lot, I think, with confidence.
38:27
And I'm just hearing you talk about this journey.
38:30
And if at some point they can do that, then that must be kind of like a step
38:35
in the right direction of them getting used to them and their identity and everything
38:39
without shutting it away. So I imagine that could be an important part of their journey.
38:45
Definitely. I think anything, you know, whether it be massage,
38:49
whether it be an intimate relationship with their partner,
38:51
you know, we address all of it and we very much mention it because everybody's
38:56
different in how much they want to speak about these things.
38:59
It might not be right now.
39:02
But it's about thinking that even if you don't feel like you could do that now,
39:05
we can definitely talk about it in the future, you know, when the time is right.
39:09
And it's OK to have those feelings and those thoughts. And how do we,
39:13
you know, people often like to go swimming, for instance. So we have quite a
39:16
few people who enjoy swimming. Can I swim with my stoma bag?
39:21
Absolutely, you can. We had a woman, I think a couple of years ago,
39:24
who swam between France and England.
39:28
And she kind of, she was like one of our champions. so we wouldn't expect people
39:32
to kind of aim for that but it's about saying you can take your clothes off you're still you,
39:38
and it's providing them with the tools to manage that so initially people might
39:42
want a covering so we can tell them where to get those so for your massage therapist,
39:48
patients might have a covering over their midsection initially but as their
39:52
confidence builds they might become more freer and actually the next time they
39:57
come in they might then just,
39:59
have the soma bag exposed so i think it's allowing people to move at their own pace.
40:04
But supporting them with options of how to manage that step by step really that's
40:09
great and it sounds done the right way it could be such a rewarding,
40:14
experience for both the client and the therapist to be part of that,
40:18
yeah amazing how about exercise and physical activity you mentioned swimming
40:23
for example but like post-surgery during those early weeks,
40:28
is there kind of are they encouraged to load it a little bit or is it just complete
40:33
rest or does it depend very much on the individual.
40:36
Depends a bit on the individual. So you're looking at where this person was
40:39
in terms of health and fitness prior to surgery.
40:42
There's a huge push now towards what they call pre-habilitation.
40:47
So getting people optimised physically prior to surgery. Now that's not always
40:53
possible depending on why they've had the surgery.
40:56
And we try and really emphasise with our patients, even if they didn't have
40:59
a stoma, if they've had major abdominal surgery, they've got to allow those
41:02
muscles to rest but core exercises are a really big part of our initial input really,
41:10
we very much focus on low impact,
41:13
simple things as much as the patient sitting in a chair and marching on the
41:17
spot it doesn't feel like it's doing much but it's just in these early days
41:20
getting those muscles moving.
41:23
Again, there's kind of long-term fallacies around people being told,
41:27
I shouldn't lift more than half a kettle of water forever. I say that, yeah.
41:31
And people very much kind of follow that. But we always try and emphasize that
41:35
activity is really important. It's really good.
41:38
But it's gradually building back up. So some of the dispensary appliance companies
41:43
we work with produce really excellent literature. And we've got Fittleworth
41:47
that we work with in Norfolk.
41:49
And they've produced a four series exercise books that,
41:55
break up that recovery so naught to six weeks six weeks to 12 weeks and so on
41:59
where you're building towards strengthening but in these early days you're really just moving that,
42:05
that body really so we will often suggest walking walking is really good exercise
42:10
because when you're upright your core has to work to keep you stable.
42:14
But again if you've got people who are normally quite fit and do sports that
42:20
will look a little bit different than someone who is very sedentary or older,
42:24
so there's general information out there and the general information is that
42:29
activity is good but and it needs to be a very individualized plan but it's really very much about,
42:36
getting people moving because the risks of not moving are are higher so it's
42:40
doing it in a protective way.
42:44
I was going to say, I guess it's very similar to anybody who's going through
42:47
any form of rehab. You're going to get the people who are going to do too much too soon.
42:50
And then the people who are going to have that kind of kinesophobia and not
42:53
do anything. And you've got to try and get that Goldilocks spot for them.
42:56
But it would again depend on the individual.
42:59
In the advert, we mentioned XPAS.
43:02
XPAS. So, yep. So there's been quite a bit of work done by the Association of Stomachare Nurses.
43:07
It was a big study over a few years because a lot of the time we would be asking questions.
43:12
What can our patients do what's your advice an awful lot of,
43:18
what we do is around hernia prevention so because these people now have a hole
43:22
in their abdominal wall the surrounding core muscles have to work so much harder,
43:27
and i think for every three people that have a stoma at least one will have
43:30
a parastomal hernia they're really really common,
43:33
they can be very debilitating,
43:35
and they can eventually require surgery so prevention is better than cure so
43:39
the x-pass is really a bunch of experts
43:42
physios, stoma care nurses who have come together and developed these best practice
43:46
recommendations and they're kind of a bit what I said a few moments ago it's
43:49
around individualization,
43:51
and gradual you know if people want to get back to their strength training or
43:56
more challenging sports then they can do that but it has to be a slow loading
44:00
and recovery back from that initial surgery but,
44:04
any patient that has a permanent stoma for instance we will automatically offer
44:09
a fitting for a support belt,
44:11
it doesn't mean that they can't that they can then go and lift and do excess
44:15
activity but it just supports their abdominal wall when they're doing a little
44:20
bit more but the expats really just brings together,
44:23
a more unified approach for all of us for the whole of the multidisciplinary
44:27
team because lots of us we'd all hear different things.
44:31
You can do this you can't do that and there's never any uniformity of practice
44:35
but that's what's that's brought together, which has been really helpful.
44:38
Very cool. You mentioned the word actually multidisciplinary.
44:41
It sounds to me like so often on the show that this is a great example of where
44:45
multidisciplinary care can really help the patient.
44:48
You may have somebody who's helping with the massage and hands-on,
44:52
which might be part of the psychological development and rehab.
44:56
You may have somebody helping with the exercise and the physical activity and
45:00
yourselves. So it sounds like most patients, it'd be great if they've got these
45:04
people talking to each other and delivering everything at the same time together?
45:09
Definitely. I mean, we're very lucky in our job. We have the same patients,
45:13
they have the same nurse.
45:15
Lots of specialties don't have that luxury. So community and district nurses,
45:18
for instance, they will see different patients every day.
45:22
They may see the same patient twice at some point.
45:26
GPs, you know, people will say they don't see the same GP twice.
45:29
So we can often be the linchpin where we bring it all together.
45:32
So we have contact with the consultants at the hospital with the hospital stoma teams,
45:36
we speak to gps regularly we speak to community nurses any practitioner we can
45:41
often advocate for and support the patient because we know their whole story.
45:45
But it is it often it is getting that dialogue going you know I won't necessarily
45:50
know everything about that patient although our specialty is stoma we all come
45:54
from different backgrounds so I have wound care and pain management in my background so,
45:59
we bring that experience and those skills and we can then have those conversations
46:03
about the patient's overall well-being a lot of what we do is trying to keep
46:08
patients at home and prevent hospital readmission.
46:11
So we can look at a wound and see that it might be looking infected or we can
46:16
manage an ileosomist's high output,
46:19
get blood tests put rehydration measures into place to make sure they stay at
46:23
home so a lot of what we do is not just about what the stoma looks like and
46:27
what the skin it's about education and kind of keeping that patient recovering
46:32
and at home and well really,
46:34
But we can't do it on our own. So those conversations, we'll often do joint
46:38
visits with other practitioners.
46:40
If we have a patient with mental health issues where the stoma obviously can
46:44
be a huge trigger for underlying issues, we will often do joint visits with
46:49
mental health practitioners because we are not the experts in that.
46:53
And that joint approach can often really benefit the patient better than just us going separately.
47:01
Brilliant. um yeah so i just feel great for your patients it sounds like they've
47:05
got so much support in place it's wonderful,
47:07
not to say it couldn't be better but it's amazing what you managed to to supply,
47:11
if we've got listeners who are thinking oh i'd like to be involved in that because
47:15
a lot of massage therapists and sports therapists do like helping groups who
47:19
have been marginalized for whatever reason and and kind of suffer from
47:22
not feeling normal if they are interested in
47:25
in getting involved and and going on some kind of list of we know we're on the
47:30
same page as you we'd love to be involved is is the best point of call looking
47:34
up like community stoma nurses like yourself or what should they do,
47:38
yeah i mean yes they can come to us we don't have any kind of portal for advertising or,
47:46
listing fellow practitioners,
47:48
there are places the best places possibly to go to are there are charity driven
47:53
support groups so you've got colostomy uk,
47:57
you've got the ileostomy association association and the eurostomy association and these,
48:03
are fantastic resources for patients there are facebook groups i believe some
48:08
of my patients are on these groups
48:10
but yeah the ileostomy association colostomy and eurostomy are often,
48:15
fantastic resources for anything and everything to do.
48:19
With kind of stoma, helping people live a quality life with their stoma.
48:23
And what you mentioned before about sometimes some kind of perpetuating myths
48:27
and things, are these organizations well-informed and they've got professionals?
48:31
Yeah, they're fantastic. So they offer peer support.
48:34
They have huge resources in terms of travel with a stoma, going to work,
48:39
anything and everything you can think of. We often direct patients and I will
48:42
often use the literature to help explain something or give patients more support.
48:47
So no, they're very, very good. We're lucky to have them. Yeah.
48:52
We will make sure those links go into the show notes because like you said,
48:56
with the prevalence, there may well be people listening who know somebody who
49:00
knows somebody or maybe a family member or, and you can make a difference.
49:04
I think what we've gathered tonight is, again, just a little bit of knowledge
49:08
and just can make such a difference to people. And you can form part of what
49:12
is already a magnificent multidisciplinary approach.
49:16
And again, without getting too heavy, just change people's lives.
49:18
Geez we're looking at somebody who really really needs to get back into into
49:22
the saddle again with their social life and everything and relationships so,
49:26
i can personally i can see yeah quite a big part that,
49:29
hands-on therapist could play in that if you're working with the right people
49:32
so thank you so much jenny it's been so educating uh it's been and and thank
49:37
you for your time and thank you for your time in general and and what you do
49:40
is it's it's amazing sounds like you do some incredible work.
49:43
Um gary benson here founder of the sta has said such an interesting discussion
49:47
this evening yes gary thank you for sharing that about your dad,
49:51
yeah i'm sure a lot of listeners will feel empowered and and reflective after
49:55
hearing that so yeah thanks everyone who did join us live,
49:58
and like i mentioned before at the beginning the conversation is kind of linked
50:02
next week because this has been or is september is
50:05
world sepsis month and the 13th is world sepsis day and next week you're going
50:09
to be joined by special guest alana forrester who's going to be discussing post-intensive
50:13
care syndrome, PICS, and with regards to sepsis.
50:16
And there will be links there with stomas and with sepsis, which I'm sure we will mention there.
50:23
Fantastic. Jenny, you yourself, are you on social? You haven't got time to go
50:26
on social media. You look after too many people. If people want to follow you
50:29
or kind of like keep in touch with what you do, is there an outlet there?
50:33
I don't, we don't really have a.
50:36
Well, I work for a company called Hollister. So all the 99% of the UK community
50:43
SOMA teams are company sponsored.
50:46
So I work for a fantastic company called Hollister and we have nurses all over the UK and Ireland.
50:51
So I would encourage people to look at the Hollister page. Our sister company
50:56
is Danzac, but we're overall part of a JDS.
51:00
That's the overall arching company. Yeah.
51:04
But Hollister, they're an American company originally, but they are worldwide.
51:08
They manufacture stoma products and catheters.
51:12
So we have colleagues in the company who look after continence care.
51:16
And again, their focus is on enabling people to live well who have continence issues.
51:20
So that's one side of our team. But yeah, the Hollister, I think Hollister and
51:25
Danzac, I'd suggest if people are interested, have a look there.
51:28
Because there's a lot of information about living well with stomas and quality of life.
51:33
There's a lot of education and support through those companies okay marvelous
51:37
thank you for that we'll make sure that again that goes into the show notes
51:40
and for people who are interested follow that up right thank you jenny thank
51:43
you once again really appreciate your time.
51:45
If you have found this episode uh people whether you joined us live thank you
51:49
for that or if you listen to the podcast
51:51
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51:55
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51:58
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52:06
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52:14
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52:19
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52:23
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52:27
and if you are listening and you're free next tuesday and you want to join the
52:30
conversation, then simply just go along to the Sports Therapy Association YouTube channel,
52:33
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52:36
and you can find links there to join us live and ask the question guests directly.
52:42
That's it, people. Thank you once again to Jenny Jones. Until we meet again,
52:45
take care of yourselves and take care of each other. We'll see you very soon.