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The Truth Behind Crohns Disease

I want to bring awareness to Inflammatory Bowel Disease (Crohns and Ulcerative Colitis) and ultimately aid in finding a cure. Fight the Flare page is run by me, Crystal. I don’t have Crohns or Colitis but my partner Lukey Infanti does. He is my inspiration for running this page and writing these words that are about to unfold. He suffers with a severe case of Crohns Disease. I am often asked by people close to me and sometimes people who aren’t “What is Crohns Disease?” and “What exactly does he go through?” with which I respond, “How long do you have?” People assume it’s exactly what it’s called, an Inflamed Bowel and that’s it. But it’s not. Not even close. Like a lot of things in the world this is one of those things you just CANNOT understand unless you have been through it yourself or know someone extremely close to you that has, even then you don’t ever fully get it. Believe me. I wish I did but you could never fully grasp what they deal with without actually having had this yourself. It is completely different case by case and no one sufferer suffers the exact same way. There are people who can manage it and live a reasonably ‘normal’ life day to day. There are people who are hospitalised constantly, having surgeries to cut out diseased parts of their intestines, or having them completely removed and who cannot work due to the symptoms of this disease and there is everything in between that. It goes from one end of the spectrum (being mild and manageable) to the other (severe, and life threatening) and it hits every possible symptom branch in between the two! EVERY SUFFERER HAS A DIFFERENT CASE. So you can see why it’s so hard for scientists, doctors, surgeons, researchers to figure this disease out! It seems almost impossible. I know what you’re thinking... This could be said about so many conditions, diseases or illnesses in this world so what makes this one so worthy of your time and concern? How many people does this disease kill compared to cancer, heart disease or diabetes? Well the answer is it doesn't kill as many, not even close actually! Dying, is for obvious reasons seen as the worse outcome of illnesses and diseases. But how about feeling like your dying every minute of every day but there is no end to it? No peace at the end of the pain and suffering, it just keeps on coming, and coming and COMING and you get no relief!! You have no purpose in life because you’re so sick you are unable to work, drive, go to family dinners, friends catch ups or even have enough energy to get out of bed and brave the short walk to the kitchen to get yourself a drink or something to eat. You have to save all your energy to get up and crawl to the toilet the 15-30 times per day that you need to empty your bowels! When you lie there in bed with no purpose in life, no connection with the outside world or the community, you can’t contribute to the world or even your family, you feel worthless and hopeless and think to yourself why am I here!? What is the point of my life if I can’t contribute to it and all the while these thoughts of worthlessness are running through your head and your battling mentally with life you feel as though someone is stabbing you in the abdomen and constantly twisting the knife!! You pop another pain pill trying for any amount of relief. You’re whole body is burning up, full of fluid and your joints are aching from all the steroids you’ve had to take to try and bring the inflammation in your digestive system down, you feel nauseous so you pop another Maxolon trying to eliminate just one symptom, you have to jab yourself in the stomach with your weekly Humira injection trying to avoid all the scar tissue from all your previous surgeries, you need to reach for a clean pad because the one in your un**es is filling up with infection from the open drain you have in your ass cheek which is stinging from all the puss that is draining from the walls of your bowel and having to wipe it 15-30 times that day causing it to be flare up and become angry, red and intolerable, you know you have to eat something cause your weight is dropping each day but you can barely swallow because the Crohns in your oesophagus is flared up and you have ulcers in your mouth, even if you did have the energy to make it to the fridge you’re not sure you can even chug down a meal replacement drink let alone feel like you could stomach anything with the way you’re feeling. Your reminded again that this is not only a physical battle but a mental one too and you feel like you would rather die than live another minute, hour, day, week, month or year in this existence! On the rare occasion that you do happen to have enough energy to attend any event and people do actually see you after months/years of being MIA from all their dinner invites, parties, events and see that from the outside you look perfectly normal, some might say fit and healthy, (pfft... the invisible disease strikes again), your then open to judgement from people saying “How sick could they be? They look fine to me!” Another thing you worry about daily… people’s judgement! Another mental hurdle to overcome… as if you don’t have enough already. Even though most don’t say it to your face you know it’s being said and if it isn’t always being said you have so much doubt within yourself and your self-esteem is so shot that you think they are anyway. It’s as if you didn’t want to make it to their wedding, engagement party, kids 1st birthday party, it’s as if you’re the worst person in the world for missing out when you seem perfectly fine. This constantly plays on your mind and the fear alone that that’s what people WILL think is enough sometimes to keep you at home away from any possible judgements. You become a recluse, stuck at home, bed ridden, no one really checks in with you and what do you really have to talk about if you do pick up the phone? What is new in your life? You haven’t been outside these four walls other than to visit doctors for weeks/months, how many times can you answer that infamous question “How you feeling?” Do they really want to know? Like really? You just answer the same way each time “yeah I’m fine!” Fine. F-I-N-E stands for Feelings Inside Not Expressed! What else can be said? People stop calling, you stop calling people. No matter how much your partner and family love you and want to understand you they will never FULLY understand, you feel alone. Trapped in this body and mind that can’t deal with the cards you’ve been dealt. How do you get up in the morning and feel happy about life? You can’t earn a living and support your partner and children, you can’t buy or rent a house for your partner and children to live in, you can’t travel overseas in case you take a turn for the worse and you need to be hospitalised, you have to travel 90 minutes to the hospital where your surgeons are located because they are the best and they know your history, you have to travel 90 minutes to see your specialist every 6 weeks for check-ups and to hear that there’s still nothing else they can do for you despite their wants and needs to, you go to the GP’s 3-4 times a week to get jabbed with needles and run tests to regularly check your infection levels in your blood, your constantly on anti-biotics which only cause you more damage because they kill what little good bacteria you actually have left in your body and so the cycle keeps on turning, your bruises and cuts never heal because you have no immune system, you miss 95% of all events your invited to, if you do get there you can’t have a beer with your mates otherwise you will suffer even more in the days that follow, you can’t eat food when you’re out because you don’t want to have to run to the toilet every 5 minutes and for people to hear you, you can’t stand up for long before needing to sit or lie down because your body is so weak and unable to keep you up any longer, you back door the event rather than saying goodbye to everyone because you can’t bear the disappointed faces staring back at you or the long goodbyes you just can’t last that much longer on your feet, you can’t plan ahead because you know there’s every chance on that day like most days you won’t make it, your always a maybe! All of this in one human mind and body… would you want to live like this? WE NEED HELP. HELP US FIND A CURE. 🎗️ #fighttheflare 🎗️#crohnsawareness 🎗️#ibdawareness