What About My Life Now? Newly Diagnosed With IBD
Being diagnosed with a life-long chronic disease can be emotionally overwhelming. Amidst all the confusion, anxiety, shock, and denial one question persists – “What will my life look like now?”.
Whether you have Crohn’s or Ulcerative colitis, an IBD requires some diet and lifestyle changes, regular monitoring, finding the right treatment for you and learning to live with at least some of your symptoms or in the best case scenario – a different schedule.
We’re here to help you settle in your new way of life and give you some advice other people living with an IBD swear by. From tips on making life with IBD a little bit easier to suggestions on how to practice mental health hygiene and maintain a social life while on treatment, FindMeCure is dedicated to holding your hand as you go through the ups and downs of IBD and figure out what works for you and what doesn’t.
So, how do you go about it? You’ve just been diagnosed with an IBD. What’s next?
First thing first, gather as much information as you can find about your condition. Thankfully, it’s 2018 and all you need to know is just one click away. But be very particular about what kind of sources you trust. You can’t go wrong with medical journals, but be mindful of personal accounts or healers who claim to have found the magical cure.
If you can easily afford it, seek a second medical opinion. Even if you completely trust your doctor and you learn nothing more than you already knew by asking around, another medical practitioner might have heard of a promising new treatment that your physician doesn’t know about yet or is too conservative to recommend.
So, start by becoming an expert on your IBD. Speaking of which…
Track your symptoms. Track your moods and your eating habits, even your sleeping schedule, your errands and working hours, your social appointments and your doctor visits.
Turn it into a fun new hobby of yours – buy a nice big notebook or download some fancy app and start journaling your heart out. Not only is it a good way to keep yourself sane in the middle of all the chaos, but if done consistently it’s also an easy way to identify patterns and get really familiar with your IBD.
Maybe some foods that seem harmless and shouldn’t cause irritation actually make you feel bloated or cause you some pain, or even things at first glance unrelated to IBD like brain fog or drowsiness. Maybe your flare-ups follow a prolonged period of sleeplessness and work-related stress. Or it could be that your symptoms worsen when you quarrel with loved ones and you feel misunderstood and lonely.
Whatever they are, spot your triggers and seek to understand your patterns. With enough patience, this journal can prove to be a huge step towards insight into the specifics of your disease.
One of the first things you’d probably want to do after being diagnosed is to get online and find kindred spirits. There are more IBD communities than there are social media platforms, so it shouldn’t be hard to find your tribe.
YouTubers, bloggers, Instagrammers, forum members, columnists can be your new role models, confidantes, treatment buddies, counselors, friends, and sources of support, advice, and humor amid all the bleakness.
You have so many opportunities to connect to people and swap advice or just tell your story to someone who can relate to it on a deeper level. And to rephrase the quote “write the books you want to read” – be the voice you want to hear. Create your own blog or YouTube channel as you start on this journey, creating a community along the way and building your own network.
Know that things will be alright. It comes both as a relief to finally have a name for what’s happening to you and as a source of fear and anxiety to have the label ‘chronic’ in front of your disease.
Yes, there’s no cure for Crohn’s and Ulcerative colitis yet but there are numerous options and treatments keep getting better, not to mention all of the promising new drugs in development currently in clinical trials. Whatever your choice of treatment is, Hattie Gladwell wants you to know that your IBD is not the end of the world.
You’ll learn to manage your symptoms, you’ll eventually know the alphabet of your remissions and flare-ups, you’ll get into a routine and soon you’ll be able to counter all of your worries with a solid plan of action.
Don’t turn your IBD into a scarecrow before you’ve become thoroughly acquainted with it. Not everyone with IBD needs surgery and even some severe cases can be managed with medication. Stressing over your prognosis is not the way to go, so spare yourself the stress and anxiety and be patient for as long as it takes to learn how to manage the disease and live your life with it.
That being said, if at some point you do need surgery, don’t prepare yourself for the worst. Yes, while doing online research you’ve probably already read horror stories and maybe surgery is now among your worst fears. But keep in mind that when push comes to shove, surgery is life-saving and stoma bags allow many people to finally live normal lives again.
Build a treatment team you trust with your life. Seek out specialists who work specifically with IBD patients and make sure they know each other. Everyone on your team should know everyone else – even your nutritionist and your pharmacist are vital parts of the success of your disease management, so make them feel included.
You should be able to trust everyone on your team, so choose wisely, as they say, and once you’ve made your choice of specialists aim at full disclosure with them. Even things that seem insignificant to you can affect your treatment, so you might even want to show them that journal we mentioned earlier.
And lastly but not least, don’t give up on your passion. Your diagnosis shouldn’t stop you from living your life and it doesn’t have to be this big thing that prevents you from going after your dreams.
Once you get into a routine, you’ll find out that life with an IBD, though it presents even more challenges, is just as confusing, messy, uncertain, lovely, fun and exciting as life just is in general. You’ll still have your career to think about, your friends to lean on if you choose to let them in, good relationships will still take as much work and you’ll still have the same rare carefree moments when everything seems just right that we all are lucky to have.
And if you decide to add more meaning to what you’re going through by taking part in the process of innovation and medical advancement, you can search for clinical trials on FindMeCure. Not only can you find a better treatment for yourself, but you can also help advance scientific research on its quest to improving people’s lives.