....."One of the things I’d like to do today is try to dispel a couple of common myths about IBD that I think are holding us back as a community.
The first one, which you often hear repeated in the media as though it is some kind of fact is that “IBD is the disease no-one talks about”. That may have been mostly true back in the 90s when I was diagnosed, but it is not at all true in 2019. Allow me to hurl a couple of facts at this creaky old myth to knock it over.....
Full transcript of my opening speech at IBD School 2019 in Sydney
[LISTEN to the full audio of my talk here]
Thank you Rupert and Maryann (gastroenterologist Professor Rupert Leong and Maryann Phillips, organisers of the event) , good morning ladies and gentlemen, and welcome to IBD school. My name is Luke Escombe, I have the honour of talking to you today from the patient perspective about an illness I’ve been living with for almost thirty years.
The first time I spoke publicly about living with Crohn’s disease was at the Melbourne Comedy Festival in 2011, in a one-man musical comedy show called Chronic, in which to make myself feel more confident I went onstage dressed like a pimp.
I did a joke about how an iPad is like an ostomy bag - because they both come with a range of accessories and you can do your business on the go - and the head of Crohn's and Colitis Australia was in the crowd and asked if I’d like to tell my story at Parliament House.
So I did, I spoke seriously about my illness for the first time there. After my talk one of the politicians came up to me and said “mate, it must be hard talking about Crohn’s in the media because it’s not a “sexy” illness".
And it was funny that Bronwyn Bishop would say that to me because a few days later one of my female friends entered me into a competition on a radio station called Mix 106.5FM to find “Sydney’s sexiest man voice” and so to all those who say you can’t talk about bowel disease in the media because it’s not “sexy”:
I won, and I’ve been doing it ever since. In fact I’ve now spoken about my bowel on four different continents, which makes me think it might be time to write a book and call it “incontinence on 4 continents”. BOOM.
Around the time I won the title of “Sydney’s sexiest man voice” my wife and i were trying to have a baby, and sure enough nine months later……..nothing, nada, zip, nothing happening, so I went to have a fertility test, and I must say it was a lot more fun than having a colonoscopy.
I was shown to a little room with a reclining chair, a bar fridge, a flat screen TV and a dimmer switch. I remember thinking, if I was still single this would be a pretty cool apartment. At first I was horrified by how much the test cost but when I turned on the TV and saw the movie selection I realised I was getting a bargain, and my biggest concern after that was that I’d only paid for three hours of parking.
So that’s a little bit about me. I don’t know if that’s too much information but I’m not very good at small talk.
Now I’ve been having lots of conversations about IBD over the last 7 or 8 years with patients, clinicians, media, other advocates, Crohn’s and Colitis Australia and audiences who think they’re just coming along to see a regular comedy show and one of the things I’d like to do today is try to dispel a couple of common myths about IBD that I think are holding us back as a community.
The first one, which you often hear repeated in the media as though it is some kind of fact is that “IBD is the disease no-one talks about”. That may have been mostly true back in the 90s when I was diagnosed, but it is not at all true in 2019. Allow me to hurl a couple of facts at this creaky old myth to knock it over.
Fact, [Professor] Rupert [Leong] and I talked about it on Channel 9’s morning show to 100s of 1000s of people in living rooms around the nation just last year.
Fact, we’re all here talking about it today.
Fact, a good portion of my social media feed is made up of advocates, support groups, people of all ages talking and asking questions about IBD every single day.
Fact, thanks to Abbvie and CCA I’ve just hosted a podcast series all about IBD called The Bottom End which launched on Spotify and iTunes last month, where I talk with fellow Crohnies about IBD as well as one of our speakers today, the very insightful and humane Dr Ed Giles.
Fact, all over the Western World, especially in countries like Australia, the US and the UK where the incidence is among the highest, people are talking about IBD, they are tweeting about it, they are hashtagging it, they are keynoting, they are podcasting, they are making humorous memes about it, they are starting or joining support groups, appearing in their local papers, going on television and radio, raising funds in all kinds of inventive, innovative, energetic ways to support new research, train IBD nurses, build websites and create support networks across the country.
So It is not just wrong to call IBD the disease no-one talks about, it’s also a bit insulting to all those people, and for someone who’s been newly diagnosed that lazy myth that people with IBD are just supposed to suffer in silence could easily become a self-fulfilling prophecy. It’s fake news, and we don’t need any more of that in 2019. So the next time you hear someone call IBD the disease that no-one talks about, please challenge them.
What I would say is “IBD is the disease that’s much easier to live with when you do talk about it”
Now when I was a young boy growing up in England my dream was to become a rockstar.
This wasn’t just an idle dream, my dad worked behind the scenes of the rock and roll industry and so thanks to him I got to see artists like Prince, Bruce Springsteen and Freddie Mercury live on stage when I was just a boy.
As a young boy I was very taken by the confidence of the great rock and roll front men . Guys like Mick Jagger who would strut out on and stage say “are you feeling alright” and then 80 000 people would go wooooo.
And then he’d say “I can’t hear you” and they’d go even crazier and then he’d say “I still can’t hear you” and the whole stadium would go bananas.
I remember trying to channel this in my very first show at the local pub. I walked out struck a big chord and said “are you feeling alright” and then “I can’t hear you” and then “I still can’t hear you” and my bass player said Luke there’s no-one here.
Of course one of the biggest things a rockstar needs is confidence, and by the age of 14 I had zero. I’d just been diagnosed with Crohn’s disease, and for the last three years of high school my only friend in the world was my guitar.
It took me six weeks to get diagnosed, and one of the reasons it took longer than it might have was that I was attending a very formal, religion-heavy all-boys school at the time where the kind of open dialogue between pupils and teachers that we value in education today just didn’t exist.
It was made very clear to us boys that the masters, as our teachers called themselves, were these vaunted authority figures, who were not to be questioned by the likes of us, our job was to listen, obey and be silent as much as possible. And, as I was soon to discover, we did healthcare in England much the same way.
So I didn’t talk to my teachers about my symptoms. I didn’t say anything for two weeks.
I was even too anxious to tell my Mum, but she could see I was losing weight, so she kept me home for another week and then when things still weren’t improving we went to see our local GP.
Possibly the only detail I’ll need to give you about this man to give you a fairly accurate assessment of his character was that he was famed around Wimbledon village where I grew up for driving a black Porsche with the vanity licence plate "DR 1", number one doctor.
He didn’t say a word to reassure me or even give me the sense that he was particularly paying attention when I told him how painful it had become for me just to sit down. Instead it was more of a bored “alright then let’s examine you”. Sent my Mum out of the room, examined me incredibly roughly, like he was in a hurry to get back to the golf course, completely missed the fact I had an abscess down there the size of a golf ball and essentially told mum I was faking my symptoms to get out of school.
This was my formative experience with the head doctor at my local practice. Number one doctor? Looking back, I think he was more like a number two.
So it took another two weeks for me to get to hospital, this time through emergency, to get the abscess drained, and it was while I was there, after a further week of tests that I was finally diagnosed with Crohn’s disease, which I’d never heard of before except in the phrase she’s an old crone, so I thought maybe I was turing into Margaret Thatcher.
No-one in the healthcare system offered me any support, or made any effort to connect with me at my level about what I was going through. My gastro told me at one point it’s not the steroids making you fat Luke it’s you" …BUT my Crohn’s went into remission about six months after I left hospital, so from their point of view, my treatment was a complete success. I was in remission. But I was also in a state of depression that lasted for about the next 15 years.
What could my gastro have said to me at 14 that might have been helpful?
I was asked to think about this recently for mental health week, after seeing a study that linked unresolved mental health issues with IBD to a 4-fold increased risk of relapses.
In other words, could I have avoided those two relapses in my twenties and early 30s that left me housebound for a year at a time, on a disability pension, weighing in at one point at just 53 kilos, and all of the medication and surgery and hospitalisation and trauma that came with them if I’d been given that extra dimension of care at the outset?
Maybe he could have said that whatever I was feeling at the time was a perfectly normal part of the illness - that going through traumatic experiences puts us in a kind of survival mode - that many people go into denial, or experience feelings of anger, grief, guilt and fear; or just go numb and disengage (like I did).
I mean look at everything you’ve just gone through, he might have said to the teenage me:
the fear and the pain of the initial symptoms
the shame and loneliness of not knowing who to talk to about it, or how to start
the confusion and self-doubt that comes from a misdiagnosis, from not being listened to or respected by your doctor
the stress of hospital admission
the physical toll of 4 to 5 weeks of diarrhea, malnutrition, stomach cramps, not being able to eat or sleep
the acute pain of recovering from major rectal surgery, getting a raw wound dressed every day
the trauma of having the dressing ripped out by a nurse in the bath after it had already fused to the skin
the embarrassment of having all these strangers see your bare bottom and private parts, when you’re already at a painfully self-conscious and awkward age
the anxiety and uncertainty of spending two weeks in hospital, in an isolation room, having invasive tests,
the bewilderment of being diagnosed with a lifelong incurable chronic illness you’ve never heard of
the misery of a high dose of steroids that completely changes your physical appearance, gives you uncontrollable appetite, rage, acne, mood swings,
the humiliation of going back to school after six weeks with a completely different body
the shame of suddenly being the fat kid, and losing all your social status
then the ordeal of coming down off the prednisone after six months only to end up back in hospital for more surgery on the day of your 15th birthday, having to hug your mum while she breaks down in tears over how the beautiful life she’d hoped for for her son will never be the same again
and then a colonoscopy at 8 months, showing no more active disease and then congratulations you’re in remission, another successful treatment, now life can go back to normal, you’re fine.
But how could it go back to normal? By this point the inflammation in my bowel was the least of my problems, it was just the trigger for by far the worst symptom I’ve ever suffered in relation to IBD, 3 years of complete social isolation and loneliness at school, and a further ten years of depression after that.
So, I think more could have been done for 14 year old me, but I don’t harbour any resentment about it because the awareness simply wasn’t there at that time, of what patients like me needed. Back then it seemed like all the gastros were interested in was what was going on inside my colon. What was going on inside my head, or in my life, was not their problem.
I do remember at one point being told in a dismissive tone, “look if you like, I can send you to see a psychiatrist”, but to me that just sounded like an invitation to a fresh new serving of trauma, so I just said “no, I’m fine” and that became my default answer over the next 20 years.
Looking back, I don’t think a psychiatrist was what the 14 year old me needed anyway, I think all I really needed was some kindness, some empathy, some validation as a human being.
I finally got that, many years later, not from a medial professional but from a fellow Crohnie. The very first time I spoke to another person with IBD, so much of my anxiety and my feelings of shame and guilt just disappeared, because I realised that what I’d been through, what I was feeling now, was quite normal, quite typical, easily within the bell curve.
So the second myth I would like to challenge today is the myth that the majority of people with IBD are doing fine. This is a statement I hear quite often from people in the medical profession. Specifically, what I would like to challenge, is the assumption that someone who is in remission and then leaves your care is doing fine, or that someone who’s disease is being controlled by medication is doing fine.
Can you really tell if someone is doing fine from seeing them for fifteen minutes every couple of months, or for a period of a few years in their teens. Obviously they’re doing a lot better than when you first saw them, but did you ever see them before they got sick, that’s the comparison you’d need to be able to make to really say they’re doing fine.
Is treading water doing fine? It is when you compare it to drowning, but what about when you compare it to swimming?
In Crohn's and Colitis Australia's recent My IBD Experience survey, which included a K-10 (Kessler psychological distress scale), 50 per cent of the 1000 or so respondents rated as distressed. Only 16% of respondents were asked by their doctor about their mental health.
When I was talking with gastros in Melbourne recently about mental health and IBD, several of them said we don’t feel confident initiating that kind of conversation, we don’t know if it’s appropriate and we don’t feel qualified to offer the right assistance. That was eye-opening for me, it was a very honest response. It is a hard conversation. But if YOU feel nervous about starting that conversation, as a specialist in IBD, as an expert in your field, how do you think WE feel, as a person off the street who’s life has just been turned upside down by an illness we know almost nothing about?
56% of respondents in the survey, who were not asked about their mental health said they wanted to be asked.
It doesn’t have to be confronting. You don’t need to be a psychiatrist or psychologist, you just need to connect as a human being. In the digital age we don’t lack information, what we lack is human connection - kindness, empathy, humour, attention. Knowing the other person well enough so you can find the right words at the right time.
Back in 2012, my gastro Alissa Walsh at St Vincent's did just that. She staged an intervention with me that transformed my life. She was 8 months pregnant at the time she did this. For the three years she’d been treating me I’d never seen her in anything but grey business wear, but on this day, because of her enormous baby bump, she was wearing a flowing white maternity dress. She told me I had a stricture in my bowel that made it impossible to do any more colonoscopies, and I thought “yay no more colonoscopies. Then she said you could have a tumour growing up there right now Luke the size of a blueberry – and we wouldn’t be able to find it until it was the size of this – here she held up a staple remover – and by then it would be too late. Then she gathered all her junior aides into the room with her and stepped forward into a shaft of sunlight streaming in through the window, which gave her all the appearance of an angel as she said to me in a strong, calm voice “Luke, I know you don’t want to have the surgery, but I strongly believe it’s the best option for your long term health
She knew that my wife and I were trying for a baby at the time. She knew that this was the perfect time for her to break through my continuous claim that I was doing fine, and that this was as good as life was going to get. A few months later, when we got the news my wife was pregnant, I signed the consent form to have an ileostomy, and ever since that surgery I have been enjoying the longest period of good health of my entire adult life.
I tour, I travel, I’m involved in all kinds of projects in health, education and the arts, I have an award-winning kids band called The Vegetable Plot that’s about to sign a deal with the ABC, and two days ago my wife of 19 years Kamilla and our six year old son Harry and I moved into our new family home on Whale Beach Road in Avalon. I feel liberated, empowered and in control of my own story. I’m not just doing fine, I’m doing great, and to all the medical students here today please if you have a passion for helping people I want to encourage you to make gastroenterology your speciality because you can do so much good, and to all the gastros here I want to say thank you for everything you do and everything you’ve done for our community. Please, continue to bring all of your humanity to your work, I wish you all the best. Thank you.
[LISTEN to the audio of my talk to hear the Q and A at the end about IBD and Mental Health]