Living With Crohn's Disease - Krista's Story
In this week’s blog post, Krista shares her story about growing up with Crohn’s disease. She has had a very difficult and painful experience growing up since she was diagnosed at the early age of 9. As you will read in her story, she had to have surgery to get an ostomy bag because her symptoms were getting so bad. An ostomy bag is a prosthetic medical device that allows bodily waste to pass through into a pouch. This surgery often helps give people their life back. I personally felt very moved from reading her story because I know how difficult and scary it must have been to be as sick as she was. I admire how Krista has gained resilience from what she went through and used her experience to create an online community for people with an ostomy bag.
Something that really stood out to me was when she said, "One thing that I’ve learned about living with IBD is to take advantage of the good days because sometimes they can be far and few between." As someone who also has a chronic illness, I know how important it is to appreciate and take advantage of healthy days because unfortunately it is hard to know how long it will last. I really appreciate Krista sharing her story with us, and think that we can all learn from her. Crohn's disease is an invisible illness and often difficult for people to truly understand it.
Tell me a bit about yourself:
My name is Krista, I’m 29 years old. I live in Calgary, Alberta, Canada with my husband. I’m a Kindergarten teacher and a passionate advocate for patients with IBD and ostomies. In my free time, I like to go to the Farmers market, go for road trips to the mountains, hiking and spending time in nature.
What is the name of your condition?
I have Crohn’s Disease, which is an inflammatory bowel disease. With Crohn’s Disease it can appear anywhere in the digestive tract (gum to bum).
At what age were you diagnosed, and how did you handle getting the news?
I was diagnosed with Crohn’s Disease when I was 9 years old. I feel like I handled getting the news of my diagnosis quite well, but it may have come down to the fact that I was young and didn’t really understand what was going on, or how it was going to change my life. I was more upset about the fact that I had to have a feeding tube in my nose and into my stomach. Honestly, the most traumatic part of my diagnosis was getting my feeding tube put in for the first time.
Tell us a bit about your condition and how it has affected your life.
Crohn’s disease is a chronic illness, there’s no cure. It can go into periods of remission with the help of medication, surgery, diet, lifestyle, etc. Over the last 19 years of living with Crohn’s, it hasn’t only affected my digestive tract, but also my eyes, and joints. My life has consisted of doctor’s appointments, procedures, infusions, injections, pills, tube feeds, hospitalizations, surgeries, etc. I’ve never really known a different life.
Some years were smoother and easier and some years were rough and the hardest days of my life (mostly my 20’s). In my darkest and sickest days, my IBD controlled my life. I couldn’t be very far from a bathroom and/or be gone for too long without having access to a bathroom, or else I’d have an accident. Before my ostomy, I was going to the bathroom 20+ times a day and having to wear an adult diaper anytime I left the house because I struggled with incontinence. The years prior to my ostomy surgery in 2018, my quality of life was nonexistent. I struggled mentally with my illness, feeling sorry for myself, and grieving my old life. I had a negative self image of myself because I was losing my hair and struggling to keep weight on due to being so ill. I struggled physically where my body was basically deteriorating. My hair was falling out, my nails were breaking, my skin was pale, and I was frail, underweight and malnourished.
Since my ostomy surgery, my quality of life has improved drastically. Ostomy life definitely comes with different hardships, but I would rather these hardships over the ones I had when I had a colon. I’ve come to accept that my life will come with lots of ups and downs, but I feel like I have the tools that I need to make it through even stronger.
How has living with your illness made you a stronger person?
Since I’ve been living with my illness for the majority of my life, I’ve been faced with many different challenges and struggles over the years. My illness has taught me how to be strong and resilient in some of my hardest medical days. It’s made me a stronger person by knowing that no matter what my illness throws at me in the future that I will be able to handle it.
What have you learned from living with your illness?
One thing that I’ve learned about living with IBD is to take advantage of the good days because sometimes they can be far and few between. Life with a chronic illness is unpredictable and doesn’t always go with your plans. IBD has taught me to focus on what really matters in life (health and family) and not to take the little things for granted.
Did living with your condition inspire you to start a blog or a business?
I started blogging and sharing what my life was like living with IBD in 2017 to educate the people in my own life about it and how it affected my life. I wanted people to know that it is way more than just a pooping disease and how these invisible illnesses can impact someone’s life. I try to be authentic and not only show the good, but also the bad and times of struggle. Over time, this platform has become more helpful for my own healing journey, especially after my ostomy surgery. I was able to find community and made so many friends (some in real life and are now some of my best friends) who are like me. I wish I would have had a community like this as I was growing up. I felt like I was alone in this journey. I didn’t know anyone like me.
Tell us about your business and where people can find you.
I share my story with IBD and an ostomy on Instagram (@my.gut.instinct). Raising awareness and being an advocate for those with IBD and an ostomy is something that my social media platform has allowed me to do. It’s given me the opportunity to work with different companies on some advocacy work for the IBD community.
How will the Healthy Life Planner help you manage your illness in 2021?
Chronically ill patients could benefit from having a planner, like the Healthy Life Planner, to be able to keep track of appointments, symptoms, medications, bills, food log, etc. It allows patients to be able to keep information all in one place and organize easily to be able to bring to GI (gastroenterologist) appointments.
Do you have any words of advice for others going through the same thing as you?
The best piece of advice I could give would be to always listen to your body and what it needs. IBD looks differently for everyone, symptoms can vary day to day. It’s easy to compare ourselves to others who don't suffer from an invisible disease so I’m here to remind you that it’s okay to rest and take things slow if you need to. Remember to always take care of yourself first.
Please make sure to leave a comment below to let us know your thoughts, or if you learned anything new. Also, If you, or someone you know, would like to share your story, please email me at healthylifeplanner@gmail.com