Inflammatory Bowel Disease (IBD) with Amy Kelly, Crohn's & Colitis Ireland

Our guest is Amy Kelly, Head of Communications and Fundraising at Crohn's & Colitis Ireland. Amy was diagnosed with Crohn's Disease when she was 27 and shares her lived experiences and the impacts and adjustments she has made to her life.

Amy explained that inflammatory bowel disease is an autoimmune disease and how it differs from irritable bowel syndrome (IBS). Amy walks us through what the symptoms are and shares some interesting statistics about the impacts of IBD on patients.

The 'poo taboo' campaign seeks to encourage and educate what healthy bowel movements are and what they should look and feel like to help spot and seek diagnosis at an earlier stage.

Amy also hosts the "GutCast" podcast – the first podcast for people living with inflammatory bowel disease (IBD) in Ireland.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support

Hosted by Chantal Boyle and Scott Casson-Rennie, Hidden Disabilities Sunflower.

If you enjoyed this podcast please leave a rating and review. Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Inflammatory Bowel Disease IBD with Amy Kelly Crohn’s & Colitis Ireland

Speaker Key:

VO VO

SC Scott Casson-Rennie

CB Chantal Boyle

AK Amy Kelly

00:00:00

Welcome to the Sunflower Conversations, where we explore the Hidden Disabilities Sunflower and its role in supporting people with hidden disabilities.

Welcome to the Sunflower Conversations with myself, Scott, and Chantal. Hi, Chantal.

Hi, Scott. How are you?

I'm very good. It's my first time leading this, so I feel like the master is in the room with you, because you've done this all the time.

You're in the driving seat.

And then I'm the trainee today, which is unusual, because on my own podcast I just crack on with it. So hopefully, we'll be fine. We'll be fine. And you'll no doubt, give me feedback afterwards if I'm not.

I'll be learning from you, Scott.

00:01:03

So, for anybody who doesn't know me, I work for a Hidden Disabilities Sunflower in Ireland, and I work on the communications side, social media, all that kind of stuff. And everybody will know you, Chantal, because they’ve all listened before. You work in the UK, just in case [overtalking].

That's right, I'm in the UK, doing a similar role to you.

But much better, it has to be said.

Social media, working with new organisations that come on board to celebrate their launch from a communications perspective. The very exciting role of being one of the hosts on the Sunflower Conversations podcast, which is great, because that's when we get to speak to people, the end user, which is wonderful. But also, speaking to experts as well, and sharing and signposting for support, which is crucial.

Yes, absolutely. Talking about guests, this episode we are joined by Amy Kelly. Amy is the Head of Communications and Fundraising raising at Crohn's and Colitis in Ireland. So we've got an Irish guest, which is lovely, obviously, for me. Amy lives with her husband in Galway, which is not too far from where I live. It's on the West Coast, for anybody who doesn't know the geography of Ireland. Amy was diagnosed with Crohn's disease at the age of 27. So, welcome, Amy.

00:02:30

Thank you so much. Hello.

Hello. And we were just saying before we started recording, you are also a podcaster, which we'll get into in a second, so there's three podcasters on this podcast. It could be a long one. Hopefully not. Hopefully we’re professional enough not to go down that route.

I hope not, because I've got to edit it. I'll be right, keep to time, everybody.

Exactly. So, Amy, you're very welcome. As well as being head of communications and fundraising at Crohn's and Colitis Ireland, you're also the co-host or the host, actually, of the Gutcast podcast, which is an interesting name, which is the first podcast for people living with inflammatory bowel disease, or IBD in Ireland. And as we said, you live with Crohn's disease yourself. On 19 May is World IBD Awareness Day, so we thought it would be a really good opportunity to talk to you and for this podcast to go around that time. So you're very welcome, you're very well placed to talk about the subject, as well. So, welcome, thank you.

Thank you so much for having me. It's great to be here to create awareness around inflammatory bowel disease. It's kind of the umbrella term and then underneath that, you have conditions like Crohn's disease, ulcerative colitis, Crohn's colitis, microscopic colitis. And it can be undefined, there's a few different variations, depending on where it is at for the patient. It's great to be here to share awareness on World IBD Day. Thank you for having me.

00:04:06

You're welcome. That takes me into the first question then. Can you explain the difference between IBD, or inflammatory bowel disease, and Crohn's and colitis? Because obviously, the work you do is with two specific conditions, but how does that differ? What's the differences?

If you think about it, so inflammatory bowel disease, IBD, is the umbrella term. And then under that, you can have variations of inflammatory bowel disease. As I said, there you can have things like Crohn's disease, ulcerative colitis, microscopic colitis, you can have undefined IBD, and so on.

I suppose the main thing in comparison to Crohn's disease and ulcerative colitis would be Crohn's disease affects anywhere along your digestive tract. That means from your mouth, all the way through to your anus, it can show signs of inflammation in variations, or in one part of those areas.

With ulcerative colitis, it is usually more localised to the large intestine, so you wouldn't have signs of inflammation in your mouth or your back passage, for example. With microscopic colitis, to be honest, the main difference between ulcerative colitis and microscopic colitis, microscopic colitis is only identified by a microscope. So, it's the same presentation of information, you may experience the same symptoms, but they can only detect it by a microscope, by a biopsy in the microscope.

00:05:36

Some people might be diagnosed with something like Crohn's colitis, and that's where the medical team are unsure at that time if it's Crohn's or colitis. And that was myself, because mine was a perforation in my intestine, so a hole burst and an abscess the other side. They’d done a colonoscopy, but they can only go up the large intestine, they couldn't get past my small intestine due to the inflammation, so there was no way of confirming that it was Crohn's disease for me at that time, but it was later then confirmed it.

It could be a mixture of the two for some people, depending. Inflammatory. bowel disease is the umbrella term, so everyone with Crohn's or colitis can say I have IBD or I have inflammatory bowel disease. But there the difference, people can still present with very similar symptoms, regardless of what your inflammation is, What some people say, for example, mouth ulcers is something I get, so that would indicate Crohn's disease, because there's inflammation present at the start of my digestive tract.

Some people might have abscesses or tears in their back passage, and that could be external or just internal, and that would be obviously a sign of inflammation that it's just outside the exact small and large bowel.

IBS, that is underneath that?

No. With IBS, this is the frustrating thing, I suppose, because IBD and IBS naturally sound exactly the same and naturally, they're both gut-related conditions. And the annoying thing is, as well, some symptoms overlap, and that can be frustrating for a few reasons. It can delay diagnosis for people and try to identify… So, I actually have IBS and IBD, just to add fuel to the…

And that would be quite common. When you're in times of remission with your IBD, so you will go through times of remission and flare, so times of inflammation, times of no inflammation, when you have it managed and under control. And that will fluctuate throughout your life, depending where it's at.

00:07:49

Whereas with IBS, it's really controlled by diet and exercise and those kind of factors. With IBS, so irritable bowel syndrome, you can see the difference when you expand out the names, inflammatory bowel disease and irritable bowel syndrome, they sound different when we spell them out that way. With irritable bowel syndrome there is no sign of inflammation present at all. There's no inflammation in the gut, there's no ulcers in the gut, there's no passing blood, not any of those symptoms, like the mouth ulcers.

I can go through the symptoms of Crohn's and colitis in more detail, but very different, but do have overlapping abdominal pain, bloating, those kind of symptoms. Some people might have diarrhoea, as well, with IBS, but there's no sign of inflammation present. That’s the main thing to understand between the two of them.

00:08:47

But what we do see is a lot of people might be diagnosed with IBS prior to being diagnosed with IBD. IBD can be quite difficult to identify and to diagnose. It typically takes around two years for somebody to get diagnosed with inflammatory bowel disease, which is quite a long time to be living in extreme pain. And depending on the severity, but it can affect people's working life, it can affect their ability to partake in society, a wide range of things. And they're suffering for quite some time.

But even the year before I was diagnosed, I was diagnosed with IBS, and then it kind of pushed Crohn's and colitis to the side. We all Google our symptoms, even though we shouldn't, but we do. And Crohn's disease did come up for me, but I, like a lot of people, just thought that Crohn's disease is just diarrhoea and that's it. And totally brushed aside, because that's not something I personally experience.

And I always say, once you've met one person with IBD, you have met one person with IBD, because it is a really complex condition in the sense that there's no rule book in regards to the way the condition presents and the way we get it treated. It's all very individual, and there can be some overlaps, but I've never met two people with the same story.

I think that's the same for a lot of conditions, isn't it? Where you may have the same condition, but actually, your symptoms are very different.

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00:10:19

In terms of the numbers of people, Ireland and globally, how many people does this effect, roughly, exactly?

In Ireland it's quite difficult to know, because we don't… Some European countries would have an IBD registry. Basically, IBD teams around the country would self-import data into that registry, and you'd have more accurate data. In Ireland, we don't have that. We're relying on various research and comparison to other European countries and globally, as well.

The figure that is used currently is around over 40,000 people in Ireland are living with IBD. But we are seeing an increase in that. That figure is going back since maybe 2011, so you can imagine, I would imagine that it's significantly higher than that. But we do see a 90% increase in children being diagnosed with IBD in Ireland, which is…

90%, sorry?

Yes, we see a rise in children. There's a mixture to that, obviously, environmental factors and so on. But also, you could put it down to better diagnostics, as well. But definitely outside of just the better diagnostics, there is a general globally massive increase in people being diagnosed. Globally, I think around 4.9 million people live with inflammatory bowel disease. It was kind of seen as higher in Western countries, but now we're seeing it increase massively everywhere, it doesn’t really matter now where you live, unfortunately. We're seeing massive increases in many countries that never really had high prevalence of it before.

00:12:05

So it's not it's not hereditary, then.

There's a lot we don't know about IBD. We can't pinpoint exactly why people get diagnosed. It's in the family of an autoimmune condition. If you can imagine, the inflammation, essentially, it's our body seeing our intestines as a foreign body, and it attacks itself, so that's what happens to us.

If they're looking at a number of different factors, there in regards to hereditary being one of them. So we do see that, that some people may have a relation, whether that be a direct relation, like a parent or a child or a sibling. I actually have two second cousins on both sides that have it, so I don't know if that's just suppose, part and parcel of the increase that we're seeing in it. And so it can vary.

Environmental factors definitely do obviously affect it as well. People think that diet causes IBD, and there's evidence to show that it doesn't. It definitely has an effect on it, obviously we're passing food through our digestive tract. So if it's inflamed and unable to do its normal job, of course it's going to affect and cause us pain and difficulty, whether to process that food or whatever, but it's not necessarily. There's nothing, I always say to people, that you did wrong as a person.

I think that's a really good point to raise, because quite often things related to our bowel, we assume that it's because of some damage that we've caused ourselves. And then the fact that it's actually autoimmune is significant.

00:13:42

It really is. I think friends and family, in particular, try to be helpful, especially when you're diagnosed, from a diet perspective they're like, can you have that? Can you eat that? Can you do this? And it's coming from a place of love, but sometimes that can be incredibly frustrating. It's really putting it out there that it's something I did as somebody to get the condition. And that's just not the case. I eat quite healthily, even in my early 20s, in college. I remember my aunt was actually over one Sunday, even as I was going back to college, packing my suitcase. And she couldn't believe the amount of fruit and veg that I had gone back, that I was obviously robbing from my mam's purse. But I was getting all that good food.

Obviously, look, we all like our takeaways. It wasn't that I was on this clean diet that I never had a takeaway. Of course I did. But all of us can have a takeaway, that doesn't mean that we all get inflammatory bowel disease or any condition, once a week, or whenever it might have been. I wasn't, and still am not, a really big drinker, so it wasn't anything to do with that.

When I look back, my mam, when I was growing up as a child, made everything from scratch. That's just the way I was reared, I suppose. I can't say, well, I had a beige diet growing up, there's nothing like that. So I think we can sometimes look at ourselves and blame ourselves for something like this. And when you're diagnosed with a condition like this, it's so important not to do that. You're juggling so much, and don't self-blame, that's the main thing, it's important just to acknowledge.

00:15:11

And do what's right for you. Because sometimes, I kind of laugh, because before I got diagnosed, and especially the couple of months prior to that, I'd have my fruits and veg during the week or whatever. My fatigue levels were really bad, particularly at that time, so my now husband would go, say, maybe meet his friends on a Friday evening. We lived in Dublin so he might go meet his friends for a drink or two, and I just couldn't go out. So I used to use a Friday, get a McDonald's for myself, and go home and chill on the couch.

And I remember saying to him, God, I feel so much better after I have the McDonald's in comparison to the fruits and veg. But that was because I had active inflammation, so me trying to process high-fibre food was put my body under so much stress. Whereas the McDonald's, because there's obviously nothing in it, was… And it's not that it's good for [overtalking].

That is really interesting. Because I have problems with my digestion and my bowel, and I took… They said do a food diary. And I did a food diary and it was all the things that were really healthy, like apples would literally be excruciating. Raw carrots, things like that. And I found that a lot of the healthy foods were incredibly difficult to digest and break down, and would leave me with, with pain. So that's quite an interesting spot there with how unhealthy the McDonald's is, because it's already been processed to…

And, look, processed food isn't good for anybody. And I'm definitely, absolutely not recommending that. It's about working with your medical team to say… Because if you are in times of flare, you can't, sometimes you just cannot process those foods. So there might be an adjustment in your diet that you might have to do during that time. When you're in remission, you should be able to eat everything just fine.

00:16:56

I'm on a predominantly plant-based diet, so far from the McDonald's. I'm completely high fibre, high everything. But last year, I was in a flare and I was quite sick and a slice of toast was about the height that I could manage. Because at time of the flare, you might have things like nausea and vomiting and loss of appetite and stuff like that. I always say to people, I don't necessarily feel hungry myself. The way I look at food, I will wake up in the morning and I will say, it is breakfast time, I must have my breakfast. And I would eat my breakfast. And then at lunchtime, I'd be like, it is lunchtime, and I would eat my lunch. And at dinnertime, I'll be like, okay, I'll eat my dinner. And obviously I have a husband, so one of us is making the dinner, so I'll just sit down and eat it.

I don't have snacks, I don't have any kind of appetite in general. That would be just the way I would be. And again, somebody else might be totally different, but that's just something I've identified. I really have my meals like clockwork, just because of the time of the day, it's not necessarily because my stomach starts rumbling.

00:17:59

Were you like that pre diagnosis or has it just always been your way?

It's funny, I obviously was, because even my mam has told me that when I was a baby, I would wake up and she was like, it usually takes about an hour or an hour and a half in the morning before you'd have your first bottle after you woke up. So it probably was, to be honest, going back my whole life. I'd be a great eater, it's not that I wouldn't be a great eater. I absolutely love my food. I'm more of a savoury tooth than a sweet tooth, I absolutely love my food.

Whenever we're going to a restaurant, I will, you bet, look at that menu before and think about what I'm going to have later on that evening. I am that kind of person. But at the same time, my three meals a day is enough for me. But then some people might have to have smaller meals throughout the day, just to give their digestive tract a break. It's really individual, particularly from a diet perspective.

Because I can have a cup of coffee because I don't have diarrhoea as a symptom, and I actually have constipation passing stool, so sometimes that cup of coffee actually helps me go in the morning and keeps me quite regular. But then other people can't have caffeine at all, some people can't have onions. It's really individual, which is so frustrating and difficult sometimes, because you'd only love, particularly when you're diagnosed with illness in the middle of it all, to be like, just give me the guidebook, and I will follow it. But it doesn’t exist.

And that's why we work with dietitians and so on, to help support people from that perspective, along with other…

00:19:30

I'm a person that's really into language and stuff. You used the terminology, remission. What does that mean when you're in…? I mean, we know what remission means, but does it have the same meaning in terms of your condition?

Exactly, yes. Crohn's and colitis, like inflammatory bowel disease, is a lifelong condition. There is no cure for our condition currently. That means that we're going to have times when we're flaring, so the term flaring for when we have signs of inflammation present. That's when our condition is really active, really overactive. It's when we see all of the symptoms, perhaps blood, loads and loads of symptoms.

Just for example, the symptoms that you can present with are obviously persistent diarrhoea, fatigue, even a fever, night sweats, nausea, vomiting. You can have fissures, you could have cramps, abdominal pain, skin tags, weight loss, mouth ulcers. And growth can actually be affected in children, as well. You can have bleeding from your back passage on the toilet tissue or the toilet bowl. And so you can see the list goes on and they’re quite varied, and can overlap with different conditions.

So prior to diagnosis, it's kind of hard to know. Other things you can experience are things like joint pain, some inflammatory arthritis. Some people might get that form of arthritis as part of their condition, and other organs can be affected as well, depending on your condition as well.

00:20:53

Say if you're diagnosed when you're in times of flare, your medical team are trying to induce remission. Remission means that the inflammation has subsided. The difference with Crohn's and colitis, with colitis, it can reduce the inflammation completely. You can have surgery. Some people might go on medication, some people might have surgery for both conditions.

If you have surgery in regards to ulcerative colitis, which is, for example, a bowel resection. So that would be removing the inflamed part. You can have these in both, but in ulcerative colitis, removing that part can actually rid you of ulcerative colitis. Now might show back up again in another part, but it can remove it completely.

With Crohn's disease, because it affects all different parts of your digestive tract, you can't remove the inflammation fully from your system, which is really important to note. But surgery and medication is still very much there as a treatment plan for people, depending on where they're at. So your medical team are trying to induce remission, and they will work with you to find the best course of action for that.

It may take a few months. So people always think, it's like that mentality of when we have a condition or we have something wrong with us, we go to hospital, we get better, we walk out, and we move on with our lives. And unfortunately, that just sometimes doesn't happen with inflammatory bowel disease. So we're trying to introduce remission. Remission means that we're taking out the inflammation from our body.

What can happen, though, even after you have an induced remission, is you will have scar tissue due to the inflammation, and then that can cause problems for some people. For my own case, as a prime example, with the flare that I was in a few years ago and last year, I had seven centimetres of inflammation in my small bowel, and ulcers. And because of that being in my small bowel, it's narrowed thickened my small bowel through the scar tissue.

00:22:47

So even though I have no inflammation, I have narrowing and thickening of my small bowel. And I have to be really careful with that now, because I can't have nuts, seeds, popcorn. Those things that we can't digest, that go in and out the same way, basically, I can't do anything with them. I need to be really careful, because if you can imagine, your intestine is supposed to like this, mine is now like this. I'm passing it through, so there can be a lot more pain when I'm eating in general because it's trying to push through a smaller space. And if I eat that kind of food, it can actually block my intestine and cause me to have a bowel obstruction, which would mean emergency surgery.

I'm probably going to have to have surgery. About 80% of patients with Crohn's disease, in particular, will have surgery perhaps at some point in their life. And those that have surgery, 100% of them will probably have a repeat surgery. That can sound so scary for people, but it's important to know that your team will do it at a time when it's right for you. Some people might never have it, which is great. Medication is advancing every year, but it's a really important treatment plan, because for me, it could actually just take out that scar tissue or that aspect of inflammation, and then I can begin to heal.

00:24:00

Some people could be a lot in flares, so they might not necessarily have long times of remission or remission at all. So perhaps surgery might be the right course of action for them to remove that area of inflammation, to induce remission, if that makes sense. Remission is what we're all after.

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How long is the bowel?

Oh, God. It's really, really, really long.

We can afford to remove sections of it, because there's so much of it.

Exactly.

And not replacing it with another tube, as such. They're just taking out that bit and slotting it together.

There's different variations of surgery that people can have. So obviously, a bowel resection is one, which is obviously removing the inflamed area or the scar tissue area. And that can be quite common. As I say, not everyone has, and I'm really conscious of saying this for anyone who might be listening, it's totally individual. As much as it's a treatment plan, we are moving away from surgery, as well, as I say, with the medications that we have available to us, which is great. But it's important to note that it can be a very effective treatment plan, depending.

The other side of it, as well, some people will live with a stoma. Some people might have a permanent stoma, so that means that once they have the surgery, they will have a bag for life. Some people might have a reversible stoma, so some people might need to give a part to their intestine a rest. So to stop anything passing through it, they will be given a stoma for a while to let that happen and let it re-heal and regain, and then have that reversed.

00:25:49

So it's completely, as I say, individual. There's so many treatment plans to be tailored to where you're at. And most people I know, when we hear stoma bags, it can be really daunting and scary and all of those things. But most people that I've spoken to who've had a stoma have gone through a real difficult journey, to be honest. Some people might have [inaudible] urgently, but some people might have it for quite some time and have them battling their condition for quite some time.

And so, many people never look back when they get a stoma bag because they have their life back. [Inaudible] ease inflammation, ease the pain and that kind of thing. And that's not to undermine how much of a life adjustment, of course it is, but it can really be a positive thing. And that's something I want to definitely get across in that regard.

SCR

I go down TikTok rabbit holes quite a bit. The algorithm shows you stuff that you've watched. I've watched the guy who has a stoma. I'm not sure why he has a stoma, but this guy is clearly comfortable with it. He knows his life, and he knows how it affects him and he knows his limitations or what he can and can't do.

00:26:52

And I think that for people who aren't informed, it's probably more scary to see somebody actually be confident and know what they're talking about, rather than somebody that's not. That's just my observations on somebody who maybe has that condition and has to live that life. And if it makes it easier for them, then why would you not?

But of course before you get to all that, you need to be diagnosed. So what is the process for being diagnosed with one of these conditions?

Again, it's kind of [inaudible]. It can be quite traumatic, unfortunately, for a lot of people. As I said, it typically takes around two years for someone to get diagnosed with inflammatory bowel disease. In my own condition, I had symptoms for quite some time. They started to ramp up, and I stared to make, not necessarily I made excuses for them, but I put them down to other things. I had started a new job, it was winter, so I was, I'm run down, or I'm just stressed with my job. When you start doing these kind of things naturally, like not making excuses, but just naturally, and putting it down to other things.

I used to refer to an area, my lower, just underneath my belly button, as my pouch, My stubborn little piece I can never lose weight on. Not that I was trying too hard, but it's just a little area that was just always very obviously popping out. I went to a GP, and unfortunately, it wasn't with my GP. I was living in Dublin, but I'm from Kildare, so it wasn't my own GP. It was a walk-in clinic, which sounds very dodge, but it was the only one, unfortunately, that I could get access to.

And I'd done a couple of urine samples and stuff, but nothing really showed up, and sent off with some painkillers. And then I just start to think everything was in my head, and then pushed on for further a couple of weeks. At this point I couldn't put on my shoes. I could feel everything in my abdomen if I was driving the car, when I was pressing the pedals, turning, lifting my seat up. All like all of these small things that we don't even think about doing, were massive challenges for me in my daily life.

00:28:54

And so then we were actually at a weekend away in Liverpool. My husband was going over to collect a car. It was very exciting, obviously you're trying to be happy for him, but I was in excruciating pain, particularly on the last day. And we went straight off the ferry, our first trip at 12 o’clock at night, off the ferry [unclear] to A&E. I went to A&E and presented, so I had a perforation in my intestine, as I said earlier, which is essentially just burst a hole in your intestine and an abscess either side and fluid leaking.

And so I was really, really unwell. I was told I was the sickest person in A&E that night. And I, looked, to be honest, no different than I look here sitting before you. I didn't have makeup on at 12 o’clock at night, but that's about it, really. That was the only difference, you wouldn't have been able to tell what was happening internally. So, for a lot of people, we do see that they are presenting at A&E prior to their diagnosis, and perhaps a few times, depending on the severity of it.

00:29:52

Some people, it might just come on all of a sudden, as I say, and they might need urgent treatment straight away. It's really individual. We’d done a survey recently, and about 47% presented to A&E prior to their diagnosis, and then some of them presented more than five times in the year or two before their diagnosis. So, A&E, I think is a big one.

GPs do refer for colonoscopies as well, so if you are experiencing some symptoms and want to get an investigation, colonoscopies, endoscopies, all those are obviously the way that they diagnose you. So even if you present at A&E you will have these tests, MRIs, CTs, whatever is needed at the time, depending on how you present, obviously, they will do it and that's how you get diagnosed with it. So they might take a biopsy or they might be able to see the act of inflammation or whatever it might be. And so that's the route.

Amy, can I just clarify, that's the route globally or just in Ireland? Are other A&E offering the colonoscopies?

When I went to A&E, I was admitted then as an inpatient, and it was the next day as an inpatient that I had all this done. So you're an inpatient, more so than… But as I say, it totally depends on what you're presenting as. Some people may be experiencing symptoms, but might not… Mine just had got to a head.

Your bloods, for example, your CRP levels are supposed to be between zero and eight, so any sign of an infection is like ten and above or something, in that space. My bloods were showing 124, so I was really on the [overtalking].

00:31:39

Blimey.

Wow.

I was really sick.

Jeez, that's massive. Between a zero and eight and you're 124.

I remember being in hospital, I was in hospital for ten days after. I remember when the consultant would come in and be like, your bloods are now showing 86. And then the next day it 50. It was gradually going down. And I was like, what does that mean? And after I realised, and I was like, oh my God.

Is part of it, can I ask, because you said you experience constipation as opposed to diarrhoea. Is part of that because your body is retaining all of the toxins? Is that the reason why you're…?

Just due to the inflammation, really, and ability to pass. The constipation I would have, most days I would go. Some people with constipation might obviously not go for a week or two, or something like that. Mine was never like that. Mine might be a couple of days, but when I pass, it's absolutely rock hard. Sometimes it would be like passing a pane of glass to be quite honest with you. That would be the level of pain that I would… I'm moving in the seat, it takes a while, I'm deep breathing, all this kind of stuff. And then sometimes you're passing blood.