In honor of World IBD Day on May 19th 2020, #IBDSuperHeroes have asked IBD advocates to share their stories about how having IBD has changed our lives, for worse and for better. Our illnesses may be invisible, but we are not – its time to be seen, warriors.
Who Are You?
Hi! My name is Vicky, and I’m a Brit living in the USA. I have a range of chronic health conditions, including ulcerative colitis. I was diagnosed in august 2016, but my symptoms started back in 2014. First came a crushing fatigue – one no doctor could figure out a cause for. Then, I gradually developed more symptoms, including the classic blood and urgency that finally drove me to the gastroenterologist’s office.
I’ve tried a range of medications in my quest for relief. They ranged from Lialda (mesalamine) to prednisone, and on to biologics that included Humira (adalimumab) and Remicade (infliximab). I’m glad to say that I am currently experiencing some success with a cocktail of Entyvio (vedolizumab) and 6 mercaptopurine (6MP). I’m crossing all my fingers and toes that it keeps working for as long as possible!
How Does IBD Effect Your Daily Life?
The biggest change I had to make to my daily life was quitting my beloved job as a preschool teacher *sob*. I’ve had to totally rethink my career path. In fact, I’m still in the process of figuring it out!
I have also had to accept that I can’t do as much as I used to. I get drained, by either pain or fatigue (or both!) and I’ve had to adjust my expectations for myself accordingly. This hasn’t been easy, and some days I still mourn the loss of my old life and self. (See 3 Tips For Coping With A Chronic Illness Diagnosis.)
On a practical level, I’ve learned some tricks to make daily life easier. I hope they can help you too!
#1. Always work out (in advance where possible) where the nearest bathroom is or will be when you go out.
#2. Take an emergency kit with you wherever you go (see How To Put Together The Perfect IBD Emergency Kit) – you will be glad you did.
#3. Invest in the best heating pad you can afford.
#4. Allow extra time to get ready for work in the morning – or for anything that involves leaving the house at a certain time. That way you can take as much time as you need in the bathroom without becoming a giant ball of stress. Getting to work late and having to explain why is not fun. I talk from personal experience!
#5. Be kind to yourself – you are doing your best.
How Has Having IBD Made You A Stronger or Better Person?
Having IBD sucks. There is no way around that! But there can be a silver lining. For me, that silver lining came in the form of self-realization. Specifically, in learning that I am stronger and far more resilient than I ever realized. I now know that setbacks won’t break me. This has given me the confidence to go after my dreams. It has given me the drive to just do the damn things that I want to do, the things I was too scared to do before. Because life is fragile, and I intend to make the most of it.
Getting ulcerative colitis has also opened my eyes to a whole world of wonderful, strong people. People who are suffering in silence. A silence that it’s time to break. If I can, I’d like to make a difference in their lives – our lives – no matter how small.
What is your story? Now is the time to share it – we are stronger together.