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Living with Moderately to Severely Active Ulcerative Colitis – Nour's Story

May 7, 2024    Posted by: Eli Lilly and Company

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The unpredictability of living with a chronic illness can make activities seem challenging and limit spontaneity. In the heart of these challenges, we find Nour, a resilient individual who has been shaped by the struggles and triumphs of managing ulcerative colitis (UC), an inflammatory bowel disease (IBD) that affects the colon of the gastrointestinal tract. Learn about Nour’s journey after being diagnosed at 21 years old as she shares the impact UC has had on her life and her work to connect with others living with this disease.  

Q: How did you feel when you first noticed symptoms and received your diagnosis? 

Nour: When I first started to experience symptoms, I wasn’t sure what it was. After some intensive blood work and a colonoscopy, I was officially given a diagnosis of moderately to severely active ulcerative colitis. It did take me by shock. I wasn’t really sure how to move forward from there. It was hard for me to accept that this was something I didn’t have any control over. 

Q: What were your most disruptive symptoms? 

Nour: Some of the most disruptive symptoms for me include going to the bathroom frequently, bowel urgency and rectal bleeding. It can trigger at any time. On days when I’m having an active flare, something as simple as a sip of water can suddenly spark the need to find a restroom ASAP. That unpredictability can take a toll. 

Q: How has bowel urgency affected your life? 

Nour: One of the symptoms of ulcerative colitis, bowel urgency, really affected my life in terms of how I can get through my day-to-day activities and how many of these activities I can reasonably do.  

It took away a little bit of the spontaneity of life, and I felt like I couldn't experience that anymore and had to go with the whims of my body. And at first, it was really hard to accept that. It got me into this position where I felt like I wasn't really having a lot of fun.  

Q: Was there a turning point for you on your disease journey? 

Nour: When I was first diagnosed with moderately to severely active ulcerative colitis, I really wasn't sure what the disease outlook would be. I wasn't really able to focus that well in my classes. I wasn't able to be involved with as many extracurricular activities as I would've liked, and I realized I had to cut down and compromise on a lot of things I used to enjoy.  

My sister, who was also diagnosed around the same time, has always been an old soul, and she would say things that are very beyond her age. She would always say, "You have good days and bad days, and learning how to work through the bad days is what's important." And it took me some time to understand what that really meant. 

Q: You’ve talked a lot about the impact of UC. Could you elaborate on that? 

Nour: In my early diagnosis stage, I was focused on feeling better physically and just trying to move past that. But as the years went by, and I kept getting switched from one medication to another, and my symptoms being on and off, I didn't realize just how much of my physical symptoms were starting to affect me. Sometimes it just sneaks up on you, and you don't realize how much of it has affected you. And at one point, I had to make a decision if I was going to let this disease control me or if I was going to do something about it first.  

In my early journey with ulcerative colitis, I didn't really seek any outside support. So, six or seven years into my diagnosis, I decided to take that step. It's been incredibly life-changing, and I think it's really helped me come to terms in understanding living with a chronic illness, how to anticipate the future and really learning to live day by day and trying to figure out how to prevent a disease from taking over your life. 

Q: Can you tell us about an experience living with active ulcerative colitis or a flareup? 

Nour: That's a good question. I recall a time where I had a good friend who was getting married, and I really wanted to attend her wedding. I knew I wasn't feeling well physically to be able to attend and with my symptoms and the number of guests that she would be having, I knew it wouldn't be practical for me to attend.  

I recall another time I had set to arrange to take the MCAT, but I hadn't received accommodations in time and unfortunately, had to cancel my exam. I didn't feel like I was in a position where I could sit for that long and not be able to take the necessary breaks I would need if I had to use the restroom. I felt like I wouldn't perform as well on the exam if I didn't have those accommodations.  

Q: How has ulcerative colitis changed your perspective of your own future? 

Nour: Ulcerative colitis has definitely changed my perception of my future. I really couldn't imagine what my life would look like one year or two years, three years down the line, and that to me was very challenging.  

It's scary to think about what could be down the road and all these what-ifs; they could impact you in a way that really takes you away from just experiencing life. And I think after some point, you realize that if you're doing all you can to manage your disease, you have to trust in the process and just enjoy living day to day. 

Q: What motivates you to keep sharing your own story? 

Nour: My biggest motivation to sharing my story is to be able to reach and impact as many people living with ulcerative colitis as I can. I think it's really important to keep talking about this. Even if you just reach one person, then I feel like we've made a huge difference. And if all it takes is reaching that one person, I think that's very powerful.