tag:lukeescombe.com.au,2005:/blogs/chronicChronic2019-11-19T12:19:42+11:00Luke Escombefalsetag:lukeescombe.com.au,2005:Post/59650092019-11-19T12:19:42+11:002024-02-10T21:21:11+11:00In Praise of Hospital Food - A patient perspective<p>A big part of my work as a keynote speaker and patient health advocate is challenging assumptions and cliches about healthcare. </p>
<p>Another big part is expressing appreciation and gratitude for all the brilliant, hard-working people in our health system. </p>
<p>Yesterday I got to do both of those things when I addressed a gathering of clinical services providers at Doltone House in Sydney. </p>
<p>These are the people who run the teams of people who serve you food in hospital, provide your linens and change your sheets. </p>
<p>[Notice I used the word "people" twice in that last sentence. That's what our health system overwhelmingly is. It's people. No-one else.] </p>
<p>Now I seem to be a little unusual in that I don't hold the belief that relentlessly criticising the health system - and by extension the people who work in it - is the best way to fix it. </p>
<p>In fact I believe that people are more likely to improve if they think they’re already doing some things well. </p>
<p>That was what prompted me to open my speech yesterday with an unconventional appraisal of that much maligned substance: hospital food. </p>
<p>What follows is the text of what I said. Or, if you prefer, you can <a contents="listen to the audio" data-link-label="" data-link-type="url" href="https://soundcloud.com/luke-escombe/in-praise-of-hospital-food/s-Lpuh2" target="_blank">listen to the audio</a> of what I said by clicking the link. </p>
<p>------------ </p>
<p>Good afternoon ladies and gentlemen, thank you for being here today. </p>
<p>My name’s Luke Escombe, I’m a musician, comedian and health advocate and I thought I’d start my talk today by saying something that a lot of people in society would find absolutely shocking. </p>
<p>I. Like. Hospital. Food. </p>
<p>That’s right. I don’t just not mind it. I like it. I eat every bit of it. I’ve even be known to visit other people in hospital and bring them outside food so I can eat their hospital food. Sometimes I leave thank you notes on the plates and post about it on Facebook. </p>
<p> </p>
<p><img src="//d10j3mvrs1suex.cloudfront.net/u/51275/0aabddf769d80f4bc8f61349f0ec6032163a2535/original/screen-shot-2019-11-17-at-12-30-22-pm.png/!!/b:W10=.png" class="size_l justify_center border_" /></p>
<p>Now I want you to understand, I haven’t had my sense of smell or my taste buds amputated. I know that hospital kitchens are unlikely to win any Michelin stars, or chef hats. I’m also not saying that the food couldn’t be better, or tastier, or more recognisable as food sometimes. </p>
<p>But here’s the thing people need to understand about hospital food before they go around badmouthing it: hospitals aren’t restaurants. That’s the wrong comparison to make. </p>
<p>They’re not hotels or airlines either. </p>
<p>They’re hospitals. </p>
<p>The food they serve is free. It’s humble. It’s delivered right to your bed. It’s food. Unlike most of the meals we make for ourselves at home, it usually covers all of the 5 basic food groups, which means it’s nutritious food. Even if the vegetables have often been boiled to death, they still show up on the plate. </p>
<p>You get a little tub of pudding and an adorable little bottle of milk. </p>
<p>And even though it’s not a restaurant, the lovely people who bring you the food drop by with a menu a few hours before, and you get to choose what you want to eat. This is important </p>
<p>In a place where so much of what you do is regulated and monitored and controlled by other people and machines, you do at least get to pick what you want to eat, and you get the excitement, the suspense, of wondering when the food will arrive, who’ll bring it to you, what it will look like and if it will look anything like what you expected it to look like. </p>
<p>That moment when dinner arrives at your bedside is one of the most exciting parts of the hospital day. There’s nothing else to look forward to after that. It’s like theatre. You savour every moment of it. The moderate delight when the food arrives, saying hello to the person who brings it to you, lifting the lid on each plate - yes, it’s food - waiting for it to cool down - sometimes for half an hour or more - then slowly, cautiously, mindfully taking each bite, feeling your body respond to perhaps the first mouthful of solid food in three days, feeling it respond to the heat, the texture, the energy, becoming aware of your teeth and your tongue and all the muscles involved in chewing and digesting doing their thing. Soup, main, bread, drink, pudding. The whole process. Knowing the person who brought it to you will return and say hello again as they take the tray away and then offer you a cup of tea with milk and sugar, and a biscuit. Maybe, if you’re really likely, more than one biscuit. </p>
<p>And ah, each sweet milky sip, each crunchy, sugary bite - is a tiny morsel of heaven. </p>
<p>What the naysayers, the detractors, the haters of hospital food don’t understand is, hospital food isn’t really even about the food, it’s about the feeling of being cared for. It’s an invitation, or for some people, a reminder, to be humble and grateful in the face of kindness. </p>
<p> So to everyone here involved in the preparation, cooking and service of hospital food, thank you, this guy for one appreciates what you do. </p>
<p><img src="//d10j3mvrs1suex.cloudfront.net/u/51275/4bb50526dd71c508a9d0ffb40126ccb494d0b8b9/original/27-hospital.png/!!/b:W10=.png" class="size_l justify_center border_" /></p>
<p>[If you'd like to hear how the crowd reacted to my comments then please<a contents="&nbsp;LISTEN" data-link-label="" data-link-type="url" href="https://soundcloud.com/luke-escombe/in-praise-of-hospital-food/s-Lpuh2" target="_blank"> LISTEN</a> to the audio]</p>Luke Escombetag:lukeescombe.com.au,2005:Post/59495552019-11-05T11:33:10+11:002022-05-25T19:43:37+10:00Two common myths about IBD - My speech at IBD School 2019 in Sydney<p><em>....."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. </em></p>
<p><em>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..... </em></p>
<p><strong>Full transcript of my opening speech at IBD School 2019 in Sydney</strong></p>
<p><strong>[LISTEN to the full audio of my talk <a contents="here" data-link-label="" data-link-type="url" href="https://soundcloud.com/luke-escombe/two-common-myths-about-ibd-luke-escombe-talk-at-ibd-school-2019/s-QxvCI" target="_blank">here</a>]</strong></p>
<p>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. </p>
<p>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. </p>
<p><img src="//d10j3mvrs1suex.cloudfront.net/u/51275/d6a8bf83587de6e560958ea9923d43c4cb71db32/original/9-pimp.png/!!/b:W10=.png" class="size_l justify_center border_" /></p>
<p>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 <a contents="Crohn's and Colitis Australia" data-link-label="" data-link-type="url" href="https://www.crohnsandcolitis.com.au/" target="_blank">Crohn's and Colitis Australia</a> was in the crowd and asked if I’d like to tell my story at Parliament House. </p>
<p>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". </p>
<p>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”: </p>
<p>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. </p>
<p>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. </p>
<p>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. </p>
<p>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. </p>
<p>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. </p>
<p>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. </p>
<p>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. </p>
<p><img src="//d10j3mvrs1suex.cloudfront.net/u/51275/404ad8cf0fd7b9194bb735a1bc0f208f5c412e11/original/45488571-10157188244434162-5406820142933868544-o.jpg/!!/b:W10=.jpg" class="size_l justify_center border_" /></p>
<p> </p>
<p>Fact, we’re all here talking about it today. </p>
<p>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. </p>
<p>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. </p>
<p><img src="//d10j3mvrs1suex.cloudfront.net/u/51275/004d574d0f776008d4bd8d492446de4f33ca7fa0/original/screen-shot-2019-11-01-at-10-25-40-pm.png/!!/b:W10=.png" class="size_l justify_center border_" /></p>
<p style="text-align: center;">[LISTEN to The Bottom End now on <a contents="Spotify " data-link-label="" data-link-type="url" href="https://open.spotify.com/show/7AZKTuJt4tIzX1sU13snX9" target="_blank">Spotify </a>and <a contents="iTunes" data-link-label="" data-link-type="url" href="https://apple.co/2kspAlx">iTunes</a>]</p>
<p>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. </p>
<p>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. </p>
<p>What I would say is “IBD is the disease that’s much easier to live with when you do talk about it” </p>
<p>Now when I was a young boy growing up in England my dream was to become a rockstar. </p>
<p>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. </p>
<p>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. </p>
<p>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. </p>
<p>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. </p>
<p>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. </p>
<p>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. </p>
<p>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. </p>
<p>So I didn’t talk to my teachers about my symptoms. I didn’t say anything for two weeks. </p>
<p>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. </p>
<p>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. </p>
<p>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. </p>
<p>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.</p>
<p>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. </p>
<p>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. </p>
<p>What could my gastro have said to me at 14 that might have been helpful? </p>
<p>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. </p>
<p>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? </p>
<p>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). </p>
<p>I mean look at everything you’ve just gone through, he might have said to the teenage me: </p>
<p>the fear and the pain of the initial symptoms </p>
<p>the shame and loneliness of not knowing who to talk to about it, or how to start </p>
<p>the confusion and self-doubt that comes from a misdiagnosis, from not being listened to or respected by your doctor </p>
<p>the stress of hospital admission </p>
<p>the physical toll of 4 to 5 weeks of diarrhea, malnutrition, stomach cramps, not being able to eat or sleep </p>
<p>the acute pain of recovering from major rectal surgery, getting a raw wound dressed every day </p>
<p>the trauma of having the dressing ripped out by a nurse in the bath after it had already fused to the skin </p>
<p>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 </p>
<p>the anxiety and uncertainty of spending two weeks in hospital, in an isolation room, having invasive tests, </p>
<p>the bewilderment of being diagnosed with a lifelong incurable chronic illness you’ve never heard of </p>
<p>the misery of a high dose of steroids that completely changes your physical appearance, gives you uncontrollable appetite, rage, acne, mood swings, </p>
<p>the humiliation of going back to school after six weeks with a completely different body </p>
<p>the shame of suddenly being the fat kid, and losing all your social status </p>
<p>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 </p>
<p>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. </p>
<p>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. </p>
<p>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. </p>
<p>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. </p>
<p>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. </p>
<p>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. </p>
<p>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. </p>
<p>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. </p>
<p>Is treading water doing fine? It is when you compare it to drowning, but what about when you compare it to swimming? </p>
<p>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.</p>
<p>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?</p>
<p>56% of respondents in the survey, who were not asked about their mental health said they wanted to be asked.</p>
<p>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. </p>
<p>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 </p>
<p>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. </p>
<p><img src="//d10j3mvrs1suex.cloudfront.net/u/51275/4bb50526dd71c508a9d0ffb40126ccb494d0b8b9/original/27-hospital.png/!!/b:W10=.png" class="size_l justify_center border_" /></p>
<p>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.</p>
<p>[<a contents="LISTEN" data-link-label="" data-link-type="url" href="https://soundcloud.com/luke-escombe/two-common-myths-about-ibd-luke-escombe-talk-at-ibd-school-2019/s-QxvCI" target="_blank">LISTEN</a> to the audio of my talk to hear the Q and A at the end about IBD and Mental Health]</p>
<p><img src="//d10j3mvrs1suex.cloudfront.net/u/51275/be25345a1dc8898cb6a9c3866c63ab719cc6053f/original/23.jpg/!!/b:W10=.jpg" class="size_l justify_center border_" /></p>
<p> </p>
<p> </p>Luke Escombetag:lukeescombe.com.au,2005:Post/48746682017-10-03T16:19:07+11:002023-12-11T04:31:42+11:00Why I'm sick of hearing "never give up"<p>Some people say giving up is not an option. They don’t just say it, they shout it at themselves through clenched teeth while lifting something heavy over their heads for no particular reason. </p>
<p>Then they write an ebook about it, and before you know it there’s a whole bunch of freshly motivated individuals out there shouting slogans and lifting heavy things over their heads for no reason. </p>
<p>Never give up. Ever. No matter how bad things get. No matter what the pain. Hang in there and fight. On your feet soldier, on your feeeeeet! </p>
<p>Normally I’d say to each their own, but sometimes people with chronic illnesses read slogans like these and can feel bad about themselves. They can feel like failures for not getting out of the house, or out of bed, and doing more with their lives. </p>
<p>“When was the last time I lifted a bunch of heavy things over my head for no reason” a young person with IBD might ask themselves, while slumped in anguish on a toilet seat trying to navigate a bowel movement through two strictures and a fistula. </p>
<p>So today I’d like to offer you some alternative advice, which I wish someone had given me during the times my illness was kicking my ass on a daily basis, and it’s this: if you’ve never given up, maybe it’s time to give it a go.</p>
<p><a contents="Continue reading...." data-link-label="" data-link-type="url" href="https://crohnsdisease.com/living/sick-of-never-give-up/" target="_blank">Continue reading....</a></p>
<p><img src="//d10j3mvrs1suex.cloudfront.net/u/51275/79053f7f1c39f0e497f102b3629ed364d233d4a7/original/never-give-up-quote-1.jpg?1507007645" class="size_l justify_center border_" /></p>
<p> </p>
<p> </p>Luke Escombetag:lukeescombe.com.au,2005:Post/48446392017-09-11T12:29:03+10:002023-12-11T05:17:17+11:00Why don't men talk about IBD?<p>Look, I don’t want to sound like a man-hating feminist. </p>
<p>A lot of my best friends are men. A lot of my heroes too. In fact, I’m a man. </p>
<p>But when it comes to talking honestly and openly about IBD, men, as a group, just aren’t cutting it. </p>
<p>Take it from me, I know. I’ve been an advocate for people living with IBD for the last six years. Almost every single person I encounter in my advocacy work is female.</p>
<p>Continue reading...</p>
<p><a contents="https://crohnsdisease.com/living/dont-men-talk-ibd/" data-link-label="" data-link-type="url" href="https://crohnsdisease.com/living/dont-men-talk-ibd/" target="_blank">https://crohnsdisease.com/living/dont-men-talk-ibd/</a></p>
<p><img src="//d10j3mvrs1suex.cloudfront.net/u/51275/34d35870fa389e7cf2d12d454e671b04f5b4c4e8/original/8985.jpg?1505096804" class="size_l justify_center border_" /></p>Luke Escombetag:lukeescombe.com.au,2005:Post/48446382017-09-11T12:25:13+10:002024-02-10T21:21:11+11:00Wait, have I had an ostomy or a lobotomy<p>There was a time when nobody went on TV and talked about what was happening deep inside our colons. Do you remember that time? It was called the 90s. </p>
<p>It was also called the 80s, 70s, 60s, 50s, 40s….well, you name it. </p>
<p>I’m not saying it was a better time. In fact, I think it’s pretty cool that we talk about our bowels on TV now. It makes diseases of the bowel feel less strange and embarrassing. It raises awareness and educates people. It promotes energetic conversation rather than awkward silence.</p>
<p>Continue reading...</p>
<p><a contents="https://crohnsdisease.com/living/ostomy-or-lobotomy/" data-link-label="" data-link-type="url" href="https://crohnsdisease.com/living/ostomy-or-lobotomy/" target="_blank">https://crohnsdisease.com/living/ostomy-or-lobotomy/</a></p>
<p><img src="//d10j3mvrs1suex.cloudfront.net/u/51275/69e50feea906876a1d36579acfa58641d99c1d1f/original/lobotomy.jpg?1505096487" class="size_l justify_center border_" /></p>Luke Escombetag:lukeescombe.com.au,2005:Post/47623822017-06-30T19:06:06+10:002023-12-11T04:08:52+11:00How I feel on World IBD Day<p>Today is World IBD Day, a day to put a microphone in front of people living with Crohn's disease and Ulcerative Colitis. </p>
<p>This year marks the 25th anniversary of my diagnosis with Crohn's at the age of 14. </p>
<p>It's not a time in my life I look back on with any great fondness. What hurt me even more than the physical pain was what IBD did to my self-confidence. It changed me as a person. Between the ages of 15 and 18 I had no friends at high school and no social life to speak of. The loneliness was soul-destroying. By the time I hit university and found a new group of friends all I wanted to do was make up for lost time by drinking myself into oblivion every night. I fell in love and got my heart ripped up many times, but had no love for myself. I felt broken and lost. </p>
<p>Looking back, the years between 15 and 21 were like a freefall. If I hadn't met my amazing wife at the age of 21 I don't know how far down I would have gone. I might never have got back up. Her love reunited me with the person I'd been before my diagnosis. I felt hopeful again. Then the illness returned. </p>
<p>The second flare was much worse than the first. I thought I'd be dead by 25. Again, after the pain and suffering what really hurt me most was the loss of self-esteem. I'd been gradually making a life for myself in Sydney. I was playing in bands and supporting myself with a day job. Now I felt helpless, useless. I spent two years at home on a disability pension. I pretty much gave up on the idea of doing anything meaningful with my life. My wife's patience was immense, but even she had a breaking point. Our marriage came close to collapsing. The idea that I would lose the one good thing I had left in my life snapped me out of my torpor and made me fight. </p>
<p>Between the ages of 26 and 30 I worked three part time jobs while simultaneously trying to build some kind of career as an artist. I was never truly well during this time, but I had enough energy to keep going with a piecemeal working life. Finally, with the help of my Dad’s retirement fund, I was able to record and release my debut album in 2008. The launch gig was one of the best nights of my life. Then the illness returned. Within 3 months of the launch I had dropped 30 kilos and was in excruciating pain. I ended up spending 11 nights in hospital and needing 2 blood transfusions. It was a year before I played another gig. </p>
<p>Somehow all these experiences led to me creating a comedy show called Chronic. By 2011 I had found a new medication that was working well enough to get me out on the road and playing to audiences again. I went to the Melbourne Comedy Festival and Edinburgh Fringe. I played at Woodford. Parts of my show were broadcast on the ABC and I was asked to become an ambassador for Crohn’s and Colitis Australia. In one crazy week at the end of 2011 I spoke at Parliament House and reduced a room full of politicians to tears, then won the title of “Sydney’s sexiest man voice” in a radio competition. To be declared Sydney’s sexiest anything after what I’d been through was the best medicine I’ve ever been given. </p>
<p>As I began doing the rounds, speaking at conferences and health industry events, I started to meet and connect with other people living with IBD. I hung out with kids who, like me, had been diagnosed in their early teens, sometimes even younger. It made me so happy to see their willingness to open up about their condition, even as it broke my heart to hear their stories. These kids were much braver than I had been. They weren’t living in denial. They weren’t shutting themselves off. They were meeting the challenge head on. <img src="//d10j3mvrs1suex.cloudfront.net/u/51275/1732a7287e88a224f29341532db5f0308ec63cb0/original/luke-at-support-group.png?1498814590" class="size_l justify_center border_" /></p>
<p>I might have carried on living at the behest of my medication for many more years. Things were starting to happen for me. There seemed to be a genuine place for me as a kind of entertainer and storyteller within the health industry. It wasn’t the kind of rock stardom I’d dreamed of as a kid but, at this point in my life, it felt better than anything I could have hoped for. For the first time my work felt like it was aligned with my ideals. I felt confident again. I was inspired. I had a sense of purpose. </p>
<p>Then came the news that my wife was pregnant, and suddenly my whole outlook changed again. I stopped thinking one or two years ahead and started to think decades. On my surgeon’s advice, I had an ileostomy - that’s where they remove the whole colon. The whole rotten thing, all gone at once. Apart from marrying my wife, it was the best decision I ever made. </p>
<p>2017 marks the five year anniversary of my surgery. I’m happy to report I’m still living medication free. I love the life I have now. I love the work I do and the people it connects me with. I love my family and friends. The illness has made me a better person. </p>
<p>Surgery like mine is not an option for everyone with IBD. One thing I’ve learnt from meeting so many people with this illness is that everyone’s disease is different. It’s a bespoke struggle, tailored just for you. One day, when we have a cure, I suspect it will be an individualised one. Something created out of our own cells, our own glistening Patronus breaking through the dark cloud of dementors to liberate us. It will be indistinguishable from magic. </p>
<p>Until then, the biggest advice I have to people living with IBD is not to isolate yourself from the people who want to help you. Your illness wants you to be afraid and ashamed. It wants you to be silent. You deserve better than that. Be kind to yourself. Be patient and loving with yourself. Reach out and connect with your community. They are just a URL and a click away at all times. </p>
<p>As a proud ambassador for Crohn's & Colitis Australia I encourage you to visit their website and make a donation today - <a contents="https://www.crohnsandcolitis.com.au/" data-link-label="" data-link-type="url" href="https://www.crohnsandcolitis.com.au/" target="_blank">https://www.crohnsandcolitis.com.au/</a> </p>
<p>With your help, these courageous kids in the photo with me will be the last generation that ever has to live with IBD. Together we can be part of the movement that makes that happen.</p>
<p><img src="//d10j3mvrs1suex.cloudfront.net/u/51275/4a97035599a67dd8d681ad02030c1640d80c1446/original/cca-teen-camp.jpg?1498813757" class="size_l justify_center border_" /></p>Luke Escombe