We had the pleasure of interviewing an inspiring woman Katie, who was diagnosed with Ulcerative Colitis quite some time ago. Just like many of us, she downplayed her initial experience with ulcerative colitis, because of the shame and stigma of an incurable disease.
It wasn’t until she was challenged by someone close in her life, that she finally realized it was time to take control of her own narrative. With the right steps and healthy approach to her diagnosis, she’s been able to explore alternative ways to help keep her symptoms in remission, all while working a career and having children.
So how did she do it? Read the interview below to find out more…
Katie, when were you diagnosed and what was that first experience like for you?
I was diagnosed with ulcerative colitis back in 2001 at 21 years old.
I’ve had issues with my stomach all my life but I thought what I was experiencing was normal. It wasn’t until the first time that I saw a toilet full of blood that I was overly concerned. I told my mother who is a nurse and she insisted that I see a GI right away.
My first visit was terrifying because I had no idea what to expect. The GI did a flex sig right there in the office and diagnosed me on the spot.
Prior to your diagnosis, were you ever exposed to IBD?
No. I had never been exposed to it and knew absolutely nothing about it.
Was it hard opening up to your network about your diagnosis? And how did they respond when you told them?
I didn’t speak openly about my diagnosis for about 10 years. I told people I had “stomach issues” but often downplayed the symptoms.
Shortly after I got married, my husband and I went to a meeting the Crohn’s and Colitis Foundation was having to recruit participants to train and fundraise for a half marathon. I was doubtful that we could raise $7,500 but he convinced me that it was important and we should do it.
The hardest part for me was reaching out to friends, family, and co-workers and admitting publically that I had an incurable illness. But the support was overwhelming and when we lined up at that starting line, we had raised over $13,000.
What have been the biggest challenges for you, since being diagnosed? And how do you deal with them?
For me, the biggest challenge is navigating doctors and treatment options.
I’m an ‘uber Googler’. I read anything and everything about my disease. I want to be completely informed about what my options are, how I manage my total health and what I could be facing 5, 10, 15 years in the future.
Not all GIs are comfortable with my questions, opinions, and beliefs in complementary and alternative forms of medicine in managing my colitis. I have found a doctor who I can have open and honest discussions with about my health and treatment options. She respects that it is my body and will work with me to come up with a treatment plan that we are both comfortable with.
You’re very physically active which is amazing! Was this something that you were doing pre-UC, or post? And how has it helped you on your journey to better health?
I started running half marathons in my mid-20s in an effort to combat the nachos and beer from frequent happy hours. I didn’t really get serious about my health and fitness until after I started having kids.
In the past 5 years, I started spinning, weight training, doing yoga and boxing several times a week. It helps me to manage my stress which is a huge trigger for me and it’s great for my mental and physical health. I also find that it helps me make better food choices because I don’t want all my hard work to be for nothing!
How much do you think diet has an impact on ulcerative colitis and what have you changed since being diagnosed?
I think diet certainly plays a role in managing your IBD. I know personally, there are certain foods that I cannot tolerate or can only have in moderation.
If I am in a flare, I tend to be stricter with my diet, limiting or completely excluding caffeine, dairy, sugar, and alcohol. I’m a little more lenient with my food choices when I’m in remission. I come from an Italian family where ‘food = love’ so I can’t see myself ever living completely on a strict diet. I just know that isn’t sustainable for me.
What motivates you to empower other people with this disease? And if you had a chance to speak to a room full of IBD patients, what would you say to them?
IBD isn’t a sexy disease. People don’t want to talk about it. But it is difficult and serious, so we need to talk about it.
I know so many people with IBD that suffer in silence and because it is an “invisible illness,” people can’t see that they are struggling. I want people to know that it’s ok to talk about it. It’s ok to ask for help. It’s ok to be frustrated and angry. That there are lots of us out there and that they aren’t alone in this journey.
You’re a mother, a wife, a UC patient, you work and you’re a career woman… How do you find the time to balance everything without wearing yourself out?
Truthfully, I think balance is a myth – it’s all about prioritization. What are the things that are important to you and what makes you happy? That is where you focus your energy.
As a working mom with three kids under six, my health can easily fall by the wayside as I try to manage everything else. And it sometimes does. But I openly and honestly communicate with my husband when I’m feeling sick, overwhelmed, stressed, or need a break. And we make it work. And I’d be lying if I didn’t say I was exhausted at the end of every day.
Okay now for the fun stuff… Can you please tell us a hilariously, yet awkward story about an experience you’ve had with UC?
Oh, there are so many! But one that had always stood out for me was a time I went out to dinner on a first date.
The guy took me to an amazing Italian restaurant and we had a wonderful dinner but halfway through, I started to feel sick. I ran to the bathroom and expelled everything we had eaten as fast as I possibly could so I could get back to the table without him knowing. And it worked – he had no idea and even asked me on a second date! That night, I also learned that I cannot tolerate eggplant.
Tell us something new/cool you’ve learned about yourself since you’ve been diagnosed…
I read a management book once that said you can choose your attitude and I’ve found that to be so true.
Living life in pain with an incurable illness is difficult but it doesn’t define me. It empowers me to push limits, test my mental and physical strength and give 110% in everything I do. It is easy to ask yourself “why me?” but honestly I think my diagnosis has helped shape the person I am. Loving, empathetic, caring, helpful and completely badass.