I vividly remember the day when everything in my life changed. My neuroscience professors would say that significant events -- wedding anniversary, birth of a child, getting stitches -- leave a strong imprint in our brains. We can recall the smallest detail -- things we wouldn’t usually remember from our everyday routine.
It was Sept. 23, 2010. Fall quarter of my third year at the University of California, San Diego. I was really excited for the new academic year. I remember that day as if it was yesterday. My younger sister and I have fondly coined it “The IBD Day,” since that was the start of my journey with inflammatory bowel disease, or IBD.
I recall what I wore and what I ate for breakfast. I remember placing my backpack in the living room soon after waking up and checking that all the essentials were there: the pencil pouch, the laptop, the notebook, water, snacks, and lunch to get through an 8-hour day. “I’ve got it all covered,” I thought.
Most importantly, I remember how I felt that day. I woke up feeling a little nauseated and brushed it off as back-to-school nerves and anxiety. I was lethargic and tired, which was a tad out of the norm for me. I remember chiding myself, “Maybe you just didn’t get enough sleep? It’s just anxiety. Relax.” Yet my stomach felt different. There were painful pangs and it felt tender. Sore, even. I pretended I didn’t notice the blood in the toilet. But again, I dismissed it all due to nerves. It wasn’t going to ruin my first day of fall quarter.
Steps Toward a Diagnosis
Fast forward 3 weeks. Yes, 3 weeks. That’s how long it took me to work up some courage to finally see the doctor. I was experiencing a whirlwind of emotions. Fear, anxiety, irritation, and just about a little of everything. The first doctor I saw suggested it might be just hemorrhoids (without doing an examination).
I was pleased and relieved. I thought “Well, that was easy” and left with smiles and prescription for hemorrhoid medication. Fast forward another month -- I was miserable and exhausted with no improvement in symptoms. My gut instinct was telling me that it wasn’t hemorrhoids, but I really wanted to believe the first doctor.
Swallowing my pride and building some more courage, I sought the advice of another doctor at the student health clinic. I retold my symptoms about the stomach pain and blood in stool and the hemorrhoid medication that didn’t work.
During our conversation, she would periodically type on the computer and glance back at me. At one point, she held my gaze and asked, “Is there anyone in your family with a history of colon cancer?”
I felt blood rushing to my ears and my heart dropping to my stomach. There was my fear. Finally in words. What I had been running away from. “Umm, no, no, not that I know of.” I felt and heard my voice shake. “Heart disease and kidney issues run in my family,” I finally managed to answer her.
She kindly asked if she could do an examination with a small office scope. “You look pretty raw,” she confirmed. Oh no, did I wait too long? Could I have somehow avoided this? Was this related to my diet? I rarely ever ate fast food or processed food. How could have this happened? None of this made sense to me. I left her office in tears and with a referral to a gastroenterologist.
It would take about another month before I would receive an official diagnosis: ulcerative colitis. It wasn’t something I had ever heard of or known anyone to have. There was a lot of learning and assurance I had to do on my own that I wish had been available from a medical provider. I didn’t realize how scared I was until I received an official diagnosis. And even then, I didn’t really know what to expect from the disease or what it might look like over the long term.
After speaking with some other patients who also have IBD, I realized we had very similar experiences in terms of building our understanding the disease, getting educated about medications, and figuring out how to cope with a lifelong chronic illness. We had to get the information on our own or through lived experiences.
From the onset of my diagnosis process in 2010 to my present journey with ulcerative diagnosis, there are some lessons I wished I could have shared with my younger self and other newly diagnosed patients:
1. Listen to your body. If you’re bleeding from an orifice you’re not supposed to be bleeding from, that should be a red flag! (No pun intended). While it took me 3 weeks to build up the courage to see a doctor and another 3 weeks to take my symptoms more seriously, I was somewhat relieved to finally make that appointment. I was still terrified, but at least I was able to share those fears and talk about them.
2. Learn to talk about poop with minimal discomfort. No one wants to talk about butts, rectums, rectal bleeding, diarrhea, and any other topics that can make you blush. These are hard to discuss openly. But only if you make them to be. It can be uncomfortably embarrassing, but everyone at one point in their life has had a bad episode of diarrhea or food poisoning. So to a certain degree, we all have talked about our bowels! I mean, can I ask for a good bowel please?
Talking about my symptoms, openly and honestly, with my family and doctor led to better communication and understanding. Letting someone know when you’re having a bad day is so incredibly important! I think it plays a pivotal role in mindfulness and positive mental well-being.
3. Ask questions unapologetically. If I can count the times I didn’t ask my doctor a question because I was afraid it might be deemed stupid, well, it would probably cover my insurance premium!
4. Learn to talk about your illness. Or even write about it. I’ve always been a private person, and talking about something so personal to me has felt somewhat invasive. I think my biggest fear stemmed from having my illness associated with my abilities.
My lifestyle and physical capabilities certainly have changed from my pre-IBD days, but they don’t define what I can accomplish. I am fatigued most days, I get sick easily, I have to make smart choices about eating habits during a flare, and my outings are based on finding the closest restroom. It’s an adjustment. Not easy by far, but these changes have become part of who I am, in the best way possible.
Photo Credit: Fly View Productions via Getty Images