Sylvia Keays

@sylvia-keays | contributor
Actress, creative and Crohn’s disease advocate — sharing awareness of living life with a crohnic illness. It takes guts I believe, or perhaps a lack thereof, to live a life with Crohn’s.
Sylvia Keays

Effect of Crohn's Disease and Gut Health on Mental Health

Do these phrases sound familiar? “Listen to your gut” “Gut feeling” “Gut-wrenching experience” “Butterflies in the stomach” There is a book that’s a bit of a bestseller right now, “The Mind Gut Connection” by Dr. Emeran Mayer, MD, demonstrating theinextricable, biological link between the mind and the digestive system.   Dr. Mayer explains, when this communication between mind and gut is out of whack, further health problems can manifest, such as depression, anxiety, mood disorders and fatigue. The gut has such an influence on our whole being – it is often referred to as our “second brain” – containing some 100 million neurons, more than in either the spinal cord or the peripheral nervous system. The “second brain” informs our state of mind in other, more obscure ways as well. “A big part of our emotions are probably influenced by the nerves in our gut,” Mayer says. So gut health affects our mind and emotions too? A recent article from Harvard Health Publication also talks about the gut-brain connection: “The brain has a direct effect on the stomach. Forexample, the very thought of eating can release the stomach’s juices before food gets there. This connection goes both ways. A troubled intestine can send signals to the brain, just as a troubled brain can send signals to the gut. Therefore, a person’s stomach or intestinal distress can be the cause, or the product of anxiety, stress or depression. That’s because the brain and the gastrointestinal (GI) system are intimately connected.” My aim with creating my blog, Let’s Get Visceral, is to express and explore my experience of life with gut disease – specifically living with Crohn’s. Why visceral? Visceral in Latin means “of the viscera” (the gut). Also, “visceral” is usually used to describe something as gutsy/raw/real. So, let’s get visceral! This book “The Mind-Gut Connection” and recent articles I have read about the connection between the gut and the mind resonate with me totally. Ever since having all the surgery for Crohn’s, complications and trauma I experienced one and a half years ago (including removing the large intestine and living with an ileostomy bag), my ability to cope with life’s stresses – as much as my health now seems to be in a somewhat stable state – has admittedly suffered enormously. Perhaps the trauma to my gut has caused a certain trauma to my emotions and my mind? Some may call it post-traumatic stress. Well, that could make sense – having lived with the unpredictability of Crohn’s for 20 years, and somewhat recently experienced a worst case situation that lasted for 12 very uncomfortable, painful and unpredictable months. Some may call it anxiety. I do feel highly anxious a lot of the time now –mainly living in fear of getting sick again, and not wanting to re-live thesurgeon’s knife. Depression? Yep – that’s a factor too, ain’t gonna lie. It’s been a challenge to re-adapt to life, as life is different now, and has to be lived differently post-surgery. Now it means slowing right down and always being mindful of stress levels. Otherwise, I am at risk of having active disease and further surgery – which is never out of the question when living with a serious case of Crohn’s disease. A friend had a really great point recently… (Side note: I am so grateful for the friends and family in my life who have been there when things get hard!) Anyway, she mentioned how we need to look after the mind as much as we need to look after the body. She’s spot on. Mental health is huge – for everyone. We need to look after our “mental hygiene,” as another friend would put it. This can be taken for granted – by all of us. I know I have. In so many of my writings about living with Crohn’s I have been an advocate for making sure those who have bowel disease follow up with our specialists, get check-ups and remain on top of our disease as much as possible. Well, through personal experience of living with a chronic illness (Crohn’s), taking care of mental heath is also vital. I have let that admittedly slip. I have let the anxiety of living with Crohn’s, depression, fear and anger get the best of me. And it’s affected not just me, but those I love. With what I have experienced, my response to those experiences, to a certain extent, is reasonable – though, sometimes not. Perhaps gut trauma really does affect one’s emotional life and the mind? Whatever the case, body and mind health are essential, equally needingattention and a lot of care. With love, Sylvia We want to hear your story. Become a Mighty contributor here. Thinkstock photo via Mila_1989.

Sylvia Keays

IBD, Crohn's Disease: Don't Push Yourself, Take It Easy

I’ve got what?! Being diagnosed with IBD is not exactly the type of news you want to hear! I heard big sweeping terms from the specialist like: “We don’t know what causes IBD…” “We don’t know how you personally got IBD…” “But, it’s for life…” “It can be serious…” “…or not so serious…” “And we don’t have a cure…” “…Yet.” All this is swimming around in your head as you’re feeling a bit overwhelmed from the colonoscopy you just had (I mean, what was that? They put a camera…where?!). So, being as adult and in control of this scenario as possible, we usually try to handle news as bravely as possible and respond to the doctor with,“OK…right…sure… So, what do I do now?” When I was first diagnosed I was 13 years old. Having returned from a holiday in Vanuatu with my folks, we all had food poisoning, unfortunately. I got worse, and the doctors couldn’t seem to put their finger on why I was so ill and losing so much weight. They performed a colonoscopy – and it turned out Crohn’s disease was active in my body. That was overwhelming news. To hear not only that I had Crohn’s (whatever that was) but that I had it…for life?! I think at that age we are enormously resilient and so, so strong! We can take things on the chin, just get through and desperately aim to return to the normal life.   The challenge is, of course, coming to terms with and accepting that you have IBD – especially with the weight of knowing it’s a permanent condition. This means life is now a bit different from the norm. Like I have mentioned before, IBD can be an easy thing to sweep under the rug as it doesn’t usually present itself on the outside. Sometimes we can even convince ourselves to a certain extent that we are OK! Put on some lip gloss, tie your hair back, sport your favorite pair of boots… I mean, who would know, right? Also, as a young adult (heck, even as a ripe adult!) I wanted to charge through life! Kick ass! Do what I want! Study, work, go out, exercise (maybe…), enjoy life, create, make goals and surpass them! Yeah, to be honest, I don’t think that desire to live life how we want to ever changes. The challenge, however, in living with IBD is we have to monitor ourselves, now so totally, to keep the disease in check as much as we can. Because – essentially – a decent level of health can be everything. And IBD can be exacerbated quickly. If we don’t look after ourselves as completely as possible, we consequently may not be able to do much at all. So hard! It has taken me many, many years (about 18 years, to be honest) to come to terms with putting myself and health first. And I still find it a challenge! Because I still want to do it all. But, having experienced three surgeries and living with an ileostomy bag, I know how serious and potentially life-threatening this disease can be if we push ourselves too hard and try to “beat” this disease. Or “ignore” the disease. IBD can quickly come out on top. It sucks, but it’s true. It’s a hard balance, I believe – acknowledging the disease so totally and also wanting to live as you want to live! I see a lot of people kicking ass with IBD – which is awesome! However, sometimes I wish people would take it easy on themselves too, knowing their condition, and I don’t think there is any shame in taking a step back to put your health first. I may see Instagram posts, for instance, from IBD “warriors.” (I’m not sure if I love that term. I feel it could encourage battling life potentially at the cost of your own health.) They may be doing a spin class then jumping on a plane to go to a friend’s wedding for the weekend, all the while studying for their degree while working full-time, socially committed throughout the week, etc. And they also mention how totally exhausted they are battling IBD and feel quite unwell and symptomatic. So sometimes I want to yell out, “Stop, please! Look after yourself!” We can do it all – we can! But we may also have to put ourselves completely first at times too to look after our health. There can also be very life-changing repercussions while living with IBD – so I believe in minimizing that risk as much as possible. Personally, after my journey with Crohn’s and seeing how bad it can get, I don’t want to go back there. So now I say no to plans if I am too exhausted and I have to scale back on what I want to do as I know now what can exhaust me. And being totally exhausted is not healthy – especially for someone with IBD. For me, running myself down is usually followed by a Crohn’s flare-up. And I don’t need or want that, and will avoid it at all costs. Being diagnosed sucks completely. But! It can be manageable. We just really have to listen to ourselves and follow-up consistently with the doctors. And talk about it! What helps me to continue to come to terms with living with IBD – because it is an ongoing journey – is talking about it, trying to own it as much as possible and reading other people’s stories. I love the fact that people are now talking about life with IBD. It makes me so happy! Years and years ago, I doubt people would have had the courage to even mention it to dear friends because they felt such a stigma around bowel disease. I know I felt the stigma. I developed a talent for skating around the subject, making jokes and changing the topic. Much love out there to those living with IBD and those newly diagnosed. Thank you for reading – and thank you too to the IBD community. It has helped me come to terms, to be open and to accept. It is an ongoing journey living with IBD or any chronic illness, and knowing we have a community is enormously helpful. I couldn’t be more grateful. With love,Sylvia We want to hear your story. Become a Mighty contributor here. Thinkstock photo via Jupiterimages.

Sylvia Keays

Being in Denial of Having Crohn's Disease

“Denial ain’t just a river in Egypt!” This was something a teacher said in a psychology class. Yes, it’s dorky…but hey, it’s also true! You know, even after 20 years of having Crohn’s disease, sometimes I forget I have this chronic illness. Or what’s even more true is that sometimes I choose to forget this very important fact. But I mean…who wants to remember that? I’d rather not, to be honest! It’s not exactly an uplifting thing to reflect on. I would much rather focus my attention on the fun things, the feel-good things, the things that makes me tick – rather than putting attention on Crohn’s. After three major surgeries – having my large intestine removed, experiencing complications and living with a temporary ileostomy and having ongoing treatment – I just want to be free from Crohn’s! I mean, enough already! I want to be free from the Crohn’s that is constantly gnawing at the back of my psyche with its threat of making me seriously ill again. I want to live my life like a normal, healthy person. Go figure, right? No more medication, no more doctor visits, no more injections, no more blood taken, no more infusions…I want none of it! But the fact is I’ll never be free from this illness – I have to take the medication, I have to see the doctors, I have to monitor this sucker. And it sucks. So…on occasion, the rebel in me – the passive-aggressive magician in me that is denial – kicks in from time to time and assumes its power with tricky thoughts such as: “I feel good, I’m fine, it’s all fine! Crohn’s?! What Crohn’s?! Ha!” or “Surely these immunosuppressant drugs can’t be good for me long-term. I’m just gonna stop taking them for a while! Yay!” or “How about I just delay that colonoscopy for a month…or five.” But when these thoughts turn into actions, and consequently the body starts to feel sick again, then I (begrudgingly) take the drugs, see the doctor and follow up on the self-care, the care of the disease. Even with my best and sometimes most conniving efforts, Crohn’s always seems to come out on top. Dang it. Living with a chronic illness is hard. Not just physically, but mentally and emotionally. Personally, it wears on me. It can be exhausting in more ways than one because it never goes away – it is always there, and always will be. So, I am learning to live with it. Even if I want to pretend it’s not there…it’s there. And at times I can be more accepting of that than others. Denial ain’t just a river in Egypt. From experience, it’s also a very ineffective tool when it comes to coping with Crohn’s. What does help to cope with disease? Talking about it, sharing, writing. These things do help to shine some light on living with the disease. Also, I am going to start being a facilitator for a support group soon. I am looking forward to that because it will both encourage awareness of the disease and encourage a sharing of experiences with those in similar situations. And we get to make poo jokes! On reflection, perhaps it’s not just the good things in life we would prefer to focus on – and that makes us, us. I’m not saying Crohn’s disease is a positive thing – because it’s really not. But perhaps it’s these unavoidable challenges that make us who we are too. One thing is for sure – there is learning in it. With love, Sylvia We want to hear your story. Become a Mighty contributor here. Thinkstock photo via Tharakorn.

Sylvia Keays

Crohn's Disease: Making Sacrifices for Your Health

I find it a challenge now to look after myself so totally – that includes saying no to people or events that you would normally jump at the chance to go to. What happens if you’re a yes person but your body says no? You can either listen to your body and snuggle into bed or ignore yourself and push on with an extra cup of coffee in your system, and then reap the consequences of your actions in the future. This is a topic matter that those with chronic illness have to weigh on a regular basis. This week, I lost the opportunity to be a part of a project because I didn’t attend a social dinner/meeting I was asked to attend. I had fully committed to the project itself — however, this dinner/meeting came up, and, wanting to go, I said yes. However, come Friday, I was exhausted. I had a big week at work, and come Friday evening when this meeting/get-together was, I (in their words) “bailed last minute.” And I did – but I couldn’t attend this social gathering if I tried. My body was done in. So, consequently, the manager questioned my commitment to the project and I was let go. Though on reflection, perhaps it was for the best. This is a classic example of putting yourself first. It’s important now more than ever, because Lord knows I do not want to end up on the surgery table again. So there we go. I guess it’s a sacrifice in a sense – you can’t please everyone. And I am bummed. But what can you do? I explained the situation to the head of the project — but it was a lost cause. Sometimes I feel people really don’t understand chronic illness unless they have one or know someone who lives with one. I was frustrated, no doubt. Frustrated at losing the project and very frustrated at Crohn’s disease. However, I slept all weekend. And it was wonderful. Moving forward, I will continue to take my work seriously; however, if ever I am too exhausted or on the edge of being run down, quite frankly, I will always listen to myself, and my health will always come first. #CrohnsAwareness We want to hear your story. Become a Mighty contributor here. Image via Thinkstock.

Sylvia Keays

Indulging in Food During the Holidays With Crohn's Disease

Food. It’s only a four-letter word, but did you know it’s actually one of the most complex words in the dictionary? Really, it’s true! Well, for some of us anyway. Let’s get one thing straight: I. Love. Food. I love food. I love food! Food. We can’t live without it. Literally – we need it to function. Without it, we would fade away to a shadow. But aside from being as necessary to us as oxygen, it is also a pleasure – an immense pleasure! We usually eat whatever tastes delicious to us, whatever makes our taste buds scream with delight. How magnificent that every day – at least three times a day – we get to consume something that elates us. No matter what is going on during the day, we can always take pleasure in those big and wonderful decisions of what we are going to eat! Food also has the capability of not only helping us exist, but allowing us to exist in ways that are either beneficial or detrimental to our physical selves. (Now it starts to get really complicated…brace yourselves.) Food can have the ability to help us gain or lose weight, depending on what and how much we eat. Particular foods give us nutrients, minerals, proteins and fats that can help alleviate particular ailments the body is presenting. “ Let food be thy medicine and medicine be thy food .” – Hippocrates Spot on! We had this wisdom B.C.… so why has it all become so complicated? Personally, I think that with the introduction of preservatives, chemicals, faster/more high-tech ways of producing food for the masses, our food has lost its natural and organic healing properties. Instead it has turned nutrition into a confusing state of affairs, promoting health concerns, bad digestion, bacteria, etc. rather than health. And perhaps that is why our culture is now turning back towards the organic way of life. However, even with an organic lifestyle, food is still not so simple. Food can be confusing, especially if you have particular ailments. The thing is, when you’re living with Crohn’s, food does become a major issue. It can sometimes help, but it can also hinder and cause pain. I like to think I can eat what I want. You know, everything in moderation? But some foods have more of an effect on the gut than others… Like ice cream. Darn it! The one constant with a lot of these health diets seems to be that sugar and particular dairy (milk especially, though hard cheeses and some yogurts seem to be OK) can disrupt your system. I always find that when I have too much “naughty” dairy it affects my digestive system. Some cramping and bloating will also be on the dessert menu. Like alcohol. Gosh dang it! To crack open a bottle of red with someone, kick back and enjoy… how lovely! Until you find you’re running to the bathroom a bit faster than usual. Like chocolate. Will you stop already?! Indeed, this well-known favorite is similar in effect to ice cream – the combination of sugar and cream seems to irritate the digestive system. Eating too much can leave me feeling uncomfortable. But who’s to stop me, right? I’m not a quitter (…when it comes to indulgence, that is). All these delightful foods seem to have more of an effect during a “flare-up” of Crohn’s (when your digestive system is somewhat inflamed/ulcerated/active with disease). When consuming these things, your system is far more sensitive than it would be if you were in remission and without the active disease that causes bloating, an increased need to make a mad dash to the nearest bathroom and usually some cramping and pain. There have been times when I was symptom-free (this doesn’t mean disease–free – the disease was just inactive) when I was having dinners with friends, drinking the wine, eating the brie cheese, having the chocolate (70 percent dark, thank you very much – yum!) and my system didn’t react at all! Other times, like now unfortunately, my system is very sensitive. I watch what I eat more because when the digestive system is sensitive, you can immediately feel the pain, cramping and bloating after eating something. Since I have also had a lot of surgery in the past and there is active disease around the scar tissue in parts of my small intestine, I am now finding it beneficial to eat foods that are easier to digest, such as bananas, oatmeal, eggs, well-cooked vegetables, fish – wholesome, but gentle on the gut. (However, I will have a delicious gluten-free chocolate brownie from my local bakery on occasion, and come the holidays I will be having an extra serving of dessert!) We often try different diets if we have health concerns: paleo, vegan, vegetarian, ketogenic, gluten-free, sugar-free, juicing, “The Maker’s Diet,” “Eat Right 4 Your Blood Type,” “The Specific Carbohydrate Diet”… Not to brag, but I have tried them all. And those are only a handful of what’s out there. When presenting a lot of flare-ups in my early 20s, my then-boyfriend and I researched “The Specific Carbohydrate Diet” and “The Maker’s Diet.” Both very wholesome, beautiful ways to eat – for anyone. But especially for people with Crohn’s. Both of these ways of eating were about consuming foods that were grain-free, mostly dairy-free and sugar-free, and full of nutrition, protein and healthy fats. Beautiful! However, what if you really want to bite into a banana muffin or sip on a chocolate milkshake? Sorry, not allowed. In the intro of “The Specific Carb Diet,” the author Elaine Gottschall expressed that you can’t deviate from this diet at all . Not even a bite of something “naughty,” because that one bite could affect the chemical balance in your body and boom: you could trigger a flare-up. Trying to sustain yourself on one of these health diets long-term is difficult, but I did it – I stayed on the Maker’s Diet for a few years. I believe this way of eating really does make sense for my body. And it helped me. I wasn’t totally symptom- or disease-free, but it helped. So why not stay on this diet 24/7? Because I’m weak. I love chocolate. I love red wine. I love pastries. I love coffee. I love pizza. I love going out to dinner, not worrying and eating what I want with those I love. Dieting becomes especially difficult during the holiday season when you want to kick up your heels and throw all care to the wind. Heaven help me! I wish food wasn’t such an issue, especially when I love it so much ! But, this is life with bowel disease. It’s going to be a constant conversation with yourself: “Should I? Or shouldn’t I?” One thing is for certain with Crohn’s disease: you are always learning! You’re constantly checking in, listening to your body and discovering that what may work for you when you are symptom-free may not work so well when your disease is active. Ah well, c’est la vie. If only that four-letter word was simple. I’ll tell you what, though – when you do go for that food you know will cause you a little grief in the near future – perhaps as a treat over the holidays – my goodness, you savor it . And when you see that person sitting down to an ice cream, making love to it with their eyes, slowly taking a bite and groaning with pleasure… as awkward as it may seem, take a step back and tip your hat, for that person is enjoying every second of that creamy sweetness, perhaps with a sacrifice in mind. Anyway, just some “food” for thought. Happy Holidays, all! May you enjoy every mouthful of your sinful delights. With love, Sylvia #CrohnsAwareness We want to hear your story. Become a Mighty contributor here. Image via Thinkstock.

Sylvia Keays

Navigating Relationships With Crohn's Disease

Crohn’s can be sexy…right? You know you’re a major turn on when you say to your partner: “Excuse me baby, I’ve just gotta run to the loo.” (And you literally run.) Or… “Scars can be sexy, right?” Or… “What am I doing today? Just going in for a casual colonoscopy.” Or… “Sorry baby, I can’t, I have to go get some blood work done – catch you after though?” That being said, in my experience of having Crohn’s and being in a relationship, the one you love loves you all the same and is totally understanding of your condition. And, you can still be sexy. It doesn’t mean the relationship with the added Crohn’s is without its stresses, however! And, on a deeper note, the Crohn’s can be quite affecting. I find the biggest weight for me currently is the feeling of being abnormally tired, and when you’re tired you’re not in your best form. I have yet to meet an overly peppy exhausted person. If you have, please introduce me – I would love to know their secrets! I feel for my gorgeous partner who has to hear me say time and time again, “I am feeling so tired.” (Hot, right?) The stresses of living with a disease is like the elephant in the room when it comes to being with someone. When you know you have a procedure coming up, your results come back negative or you’re waiting for the next step in your treatment…how can you totally relax and be completely present with your loved one when that is at the back of your mind? Guilt can go hand in hand with chronic disease as well, and if things are bad with your health, those issues may start to become the forefront of relationship. What happened to planning for the future, making travel plans or simply enjoying each day when you have this potentially life-threatening disease on your hands? You can start to feel guilty for even having the disease to begin with (even though it’s totally not your fault). You can feel guilty for stressing your partner, you can start to hate yourself, you can feel like a total downer at times, you can feel like an invalid, a dependent or someone who is physically gross and weak. And this sucks, especially if you have drive and ambition and desire to live a beautiful and robust life. You can start to feel really awful when you see the stress of illness affect your relationship. This has happened to me. When I was younger, I didn’t know how to handle it and neither did my partner. We were overwhelmed. We were both aspiring creatives working our butts off in Los Angeles – and making ground, too! However, my body kept crashing, and knowing the medical system was more supportive for me in Australia, I left him, America and a potentially great career to look after my health and start a new life in the arts here in Sydney. That was heartbreaking and so, so hard. And then I had another relationship in Australia where in the same year I had three major surgeries and major complications. This made it very difficult for him and I, to say the least. Terribly hard. What have I learned? As challenging as it is living with chronic disease, you can become better at living with it and handling it.  You get better at it as time goes on. No one really knows how to handle an unexpected change in plans (as is the nature of chronic disease) until it happens! I have learned to be more patient with myself and to be easy on myself as much as possible. To be kinder to myself and to loved ones. And perhaps, instead of beating myself up about living with Crohn’s, to pat myself on the back because it is challenging. Though I am handling it, which is admirable! And also, as I have said before, it takes guts (or perhaps a lack thereof) to live with Crohn’s. It’s not easy having a relationship with Crohn’s. However, the right partner will love you all the same. It can work! And scars can be sexy! Colonoscopies can be a laughing matter. Blood work can be OK when you know you’re meeting the one you love after. Perhaps the right relationship can make the chronic illness experience an easier one. With love, Sylvia We want to hear your story. Become a Mighty contributor here.

Sylvia Keays

Admiring People Fighting Invisible Battles and Remaining Positive

How much do we let our circumstance define who we are? There is a quote by Seneca that says: “Happiness is defined by our disposition, not upon our circumstance.” Circumstance, I believe, can have a profound effect on our lives. But, how we choose to let circumstance define us is, I believe, our choice. We all have challenges in life, our hard chapters, periods in life that have been surreal, heartbreaking or painful. These times, I feel, can inform us – hopefully we can learn from it, become stronger or use it. And then life goes on, right? Yeah, I believe it does. In a way, I feel that having experienced the pain and fear and inconsistency that comes along with chronic illness has made me immensely grateful for the good in life. And I feel I have developed (if anything) an increased ability to let hardships go. Life has its challenges, always – but I don’t believe we are defined by them. Perhaps it’s how we choose to move forward that defines us. While writing this at my local café, I met a beautiful woman who shared with me that only yesterday she had lost her best friend to ovarian cancer. Heartbroken, she is, however, finding light in looking to spend more time with her children. I admire those who have suffered and have had their challenges. People are truly amazing. My heart sings when I hear and read stories of overcoming and finding light amidst the darkness. I believe these people are the true warriors of our time. Even if the fight may not be visible to the everyday eye. Another by Seneca: “Sometimes even to live is an act of courage.” With love, Sylvia x We want to hear your story. Become a Mighty contributor here .

Sylvia Keays

When I Didn't Realize How Bad My Crohn's Disease Symptoms Were

“You look great!” Um, thanks. I have been in the hospital a number of times before due to Crohn’s disease flare-ups over the past 18 years. Sometimes I was so sick, I was unable to walk due to pain or weakness, or losing blood, but never have I had to face the surgeon’s knife. That would never happen to me! No way! That only happens to other people who are really sick! I’ll never get to that point! I thought. Until I did. The end of 2014 I was doing a show, and experienced terrific pain during a performance. I thought I may have pulled a muscle, and I thought the pain would go, but it only got worse. I ended up in the emergency room; lo and behold, it was Crohn’s. Even after 18 years, it always took me by surprise when I would have a flare. Apparently there was a small hole in my large intestine that the doctors managed to heal with treatment in the hospital for two weeks, avoiding surgery. I left the hospital in November 2014, and started to feel better! So, at the end of the year, I spent some time in the States and came back to Australia beginning of 2015 — carrying on with work and life, all going well. Funny thing is, when you’re feeling well, you tend to forget you have Crohn’s. And this is where the danger lies, I believe. Because, when you have Crohn’s, even if you’re “feeling well,” that doesn’t necessarily mean you are. I was back in the hospital again in June 2015, booked in for another colonoscopy. As I was going in for the procedure, I bumped into my previous gastroenterologist. He said, “Hello Sylvia! How are you going?” I said, “Not too bad (why do us Aussies always under-play things?), I’m having a bit of a flare, so am going in for a colonoscopy.” He said, “OK! Well, you look great! A bit thin, but you look great!” I said, “Thanks.” A Crohn’s point. You can look fabulous, but can be feeling far from it. Please don’t judge a book by its cover, friends! I went in for the colonoscopy and my new specialist gave me the results: “Your intestines are so ruptured, we couldn’t even get the camera through, we don’t even know how you’re walking. We need to operate right away because this is potentially life threatening.” And there it began. I was one of those people who was apparently so sick, they needed to perform a resection surgery (removing a part of the large intestine). Which turned into two surgeries, which turned into three surgeries, removing all of my large intestine, with a temporary ileostomy — the dreaded bag. This, by the way, is not standard. Apparently a resection surgery, is a resection surgery. And that’s it. You’re in, you’re out, you go home. My first surgery, however, broke away in my body after a week of recovery. Truly horrific, and have never been in so much pain and have never felt so frightened in my life. The surgeons had to do an emergency second operation, removing the remainder of my large intestine, and that’s where I ended up with the ileostomy — the bag. Thankfully the ileostomy was only temporary. This sort of major surgical complication only ever happened to the surgeon once before. Also, during my six-week stay in the hospital (which was only meant to be two weeks max) there were further complications. In fact, medical students came around to have a look at me, as a study on “what can go wrong when operating on Crohn’s patients.” Great. They were, by the way, quite strapping doctors, so that was a highlight. I, however, wasn’t in my best form, to say the least. I was looking exactly as I was feeling. Crohn’s can be very tricky, in a number of ways. It can even fool the patient. You may look great! Doctors can even say you look great! You may think you’re feeling great! And that’s hard to monitor, because with chronic illness, you can become so accustomed to being run down, and experiencing pain on a regular basis, that your tolerance for pain is actually quite high compared to others not experiencing chronic illness. Thankfully now one year later, I am doing well. I’m on a new medication, Humira, which has helped put the disease into remission. And, I hope to continue to stay in remission. And, I know I will never let myself get to that point ever again. The moment there is a hint of anything, I am straight to the doctor. Sign up to follow more stories by people with Crohn’s. Sylvia before and after her surgery. So, my learning from all of this is — take this disease incredibly seriously. I don’t think I ever really did, not to the extent I should have. Being a “bit sick,” for me, was a norm. Until now. Please, friends with Crohn’s, and family members of those with Crohn’s, don’t judge the disease from how you may look or feel, even if you feel great! Monitor yourself consistently with doctors, specialists, talk about Crohn’s, go to support groups. Ask questions, share. This disease is a very real thing. And, it can take you completely off guard. Lord knows it did with me.

Sylvia Keays

When I Didn't Realize How Bad My Crohn's Disease Symptoms Were

“You look great!” Um, thanks. I have been in the hospital a number of times before due to Crohn’s disease flare-ups over the past 18 years. Sometimes I was so sick, I was unable to walk due to pain or weakness, or losing blood, but never have I had to face the surgeon’s knife. That would never happen to me! No way! That only happens to other people who are really sick! I’ll never get to that point! I thought. Until I did. The end of 2014 I was doing a show, and experienced terrific pain during a performance. I thought I may have pulled a muscle, and I thought the pain would go, but it only got worse. I ended up in the emergency room; lo and behold, it was Crohn’s. Even after 18 years, it always took me by surprise when I would have a flare. Apparently there was a small hole in my large intestine that the doctors managed to heal with treatment in the hospital for two weeks, avoiding surgery. I left the hospital in November 2014, and started to feel better! So, at the end of the year, I spent some time in the States and came back to Australia beginning of 2015 — carrying on with work and life, all going well. Funny thing is, when you’re feeling well, you tend to forget you have Crohn’s. And this is where the danger lies, I believe. Because, when you have Crohn’s, even if you’re “feeling well,” that doesn’t necessarily mean you are. I was back in the hospital again in June 2015, booked in for another colonoscopy. As I was going in for the procedure, I bumped into my previous gastroenterologist. He said, “Hello Sylvia! How are you going?” I said, “Not too bad (why do us Aussies always under-play things?), I’m having a bit of a flare, so am going in for a colonoscopy.” He said, “OK! Well, you look great! A bit thin, but you look great!” I said, “Thanks.” A Crohn’s point. You can look fabulous, but can be feeling far from it. Please don’t judge a book by its cover, friends! I went in for the colonoscopy and my new specialist gave me the results: “Your intestines are so ruptured, we couldn’t even get the camera through, we don’t even know how you’re walking. We need to operate right away because this is potentially life threatening.” And there it began. I was one of those people who was apparently so sick, they needed to perform a resection surgery (removing a part of the large intestine). Which turned into two surgeries, which turned into three surgeries, removing all of my large intestine, with a temporary ileostomy — the dreaded bag. This, by the way, is not standard. Apparently a resection surgery, is a resection surgery. And that’s it. You’re in, you’re out, you go home. My first surgery, however, broke away in my body after a week of recovery. Truly horrific, and have never been in so much pain and have never felt so frightened in my life. The surgeons had to do an emergency second operation, removing the remainder of my large intestine, and that’s where I ended up with the ileostomy — the bag. Thankfully the ileostomy was only temporary. This sort of major surgical complication only ever happened to the surgeon once before. Also, during my six-week stay in the hospital (which was only meant to be two weeks max) there were further complications. In fact, medical students came around to have a look at me, as a study on “what can go wrong when operating on Crohn’s patients.” Great. They were, by the way, quite strapping doctors, so that was a highlight. I, however, wasn’t in my best form, to say the least. I was looking exactly as I was feeling. Crohn’s can be very tricky, in a number of ways. It can even fool the patient. You may look great! Doctors can even say you look great! You may think you’re feeling great! And that’s hard to monitor, because with chronic illness, you can become so accustomed to being run down, and experiencing pain on a regular basis, that your tolerance for pain is actually quite high compared to others not experiencing chronic illness. Thankfully now one year later, I am doing well. I’m on a new medication, Humira, which has helped put the disease into remission. And, I hope to continue to stay in remission. And, I know I will never let myself get to that point ever again. The moment there is a hint of anything, I am straight to the doctor. Sign up to follow more stories by people with Crohn’s. Sylvia before and after her surgery. So, my learning from all of this is — take this disease incredibly seriously. I don’t think I ever really did, not to the extent I should have. Being a “bit sick,” for me, was a norm. Until now. Please, friends with Crohn’s, and family members of those with Crohn’s, don’t judge the disease from how you may look or feel, even if you feel great! Monitor yourself consistently with doctors, specialists, talk about Crohn’s, go to support groups. Ask questions, share. This disease is a very real thing. And, it can take you completely off guard. Lord knows it did with me.

Sylvia Keays

When I Didn't Realize How Bad My Crohn's Disease Symptoms Were

“You look great!” Um, thanks. I have been in the hospital a number of times before due to Crohn’s disease flare-ups over the past 18 years. Sometimes I was so sick, I was unable to walk due to pain or weakness, or losing blood, but never have I had to face the surgeon’s knife. That would never happen to me! No way! That only happens to other people who are really sick! I’ll never get to that point! I thought. Until I did. The end of 2014 I was doing a show, and experienced terrific pain during a performance. I thought I may have pulled a muscle, and I thought the pain would go, but it only got worse. I ended up in the emergency room; lo and behold, it was Crohn’s. Even after 18 years, it always took me by surprise when I would have a flare. Apparently there was a small hole in my large intestine that the doctors managed to heal with treatment in the hospital for two weeks, avoiding surgery. I left the hospital in November 2014, and started to feel better! So, at the end of the year, I spent some time in the States and came back to Australia beginning of 2015 — carrying on with work and life, all going well. Funny thing is, when you’re feeling well, you tend to forget you have Crohn’s. And this is where the danger lies, I believe. Because, when you have Crohn’s, even if you’re “feeling well,” that doesn’t necessarily mean you are. I was back in the hospital again in June 2015, booked in for another colonoscopy. As I was going in for the procedure, I bumped into my previous gastroenterologist. He said, “Hello Sylvia! How are you going?” I said, “Not too bad (why do us Aussies always under-play things?), I’m having a bit of a flare, so am going in for a colonoscopy.” He said, “OK! Well, you look great! A bit thin, but you look great!” I said, “Thanks.” A Crohn’s point. You can look fabulous, but can be feeling far from it. Please don’t judge a book by its cover, friends! I went in for the colonoscopy and my new specialist gave me the results: “Your intestines are so ruptured, we couldn’t even get the camera through, we don’t even know how you’re walking. We need to operate right away because this is potentially life threatening.” And there it began. I was one of those people who was apparently so sick, they needed to perform a resection surgery (removing a part of the large intestine). Which turned into two surgeries, which turned into three surgeries, removing all of my large intestine, with a temporary ileostomy — the dreaded bag. This, by the way, is not standard. Apparently a resection surgery, is a resection surgery. And that’s it. You’re in, you’re out, you go home. My first surgery, however, broke away in my body after a week of recovery. Truly horrific, and have never been in so much pain and have never felt so frightened in my life. The surgeons had to do an emergency second operation, removing the remainder of my large intestine, and that’s where I ended up with the ileostomy — the bag. Thankfully the ileostomy was only temporary. This sort of major surgical complication only ever happened to the surgeon once before. Also, during my six-week stay in the hospital (which was only meant to be two weeks max) there were further complications. In fact, medical students came around to have a look at me, as a study on “what can go wrong when operating on Crohn’s patients.” Great. They were, by the way, quite strapping doctors, so that was a highlight. I, however, wasn’t in my best form, to say the least. I was looking exactly as I was feeling. Crohn’s can be very tricky, in a number of ways. It can even fool the patient. You may look great! Doctors can even say you look great! You may think you’re feeling great! And that’s hard to monitor, because with chronic illness, you can become so accustomed to being run down, and experiencing pain on a regular basis, that your tolerance for pain is actually quite high compared to others not experiencing chronic illness. Thankfully now one year later, I am doing well. I’m on a new medication, Humira, which has helped put the disease into remission. And, I hope to continue to stay in remission. And, I know I will never let myself get to that point ever again. The moment there is a hint of anything, I am straight to the doctor. Sign up to follow more stories by people with Crohn’s. Sylvia before and after her surgery. So, my learning from all of this is — take this disease incredibly seriously. I don’t think I ever really did, not to the extent I should have. Being a “bit sick,” for me, was a norm. Until now. Please, friends with Crohn’s, and family members of those with Crohn’s, don’t judge the disease from how you may look or feel, even if you feel great! Monitor yourself consistently with doctors, specialists, talk about Crohn’s, go to support groups. Ask questions, share. This disease is a very real thing. And, it can take you completely off guard. Lord knows it did with me.