Living with Ulcerative Colitis
I’ve wanted to write about this for a long time but never quite found the motivation. At first glance, you wouldn’t guess it about me. If we were out and you offered me a coffee, I’d politely decline and opt for a tea without milk. In the worst-case scenario, I might settle for a black coffee. For those of us with this condition, milk is no friend.
What is Ulcerative Colitis?
Warning — some experiences might be triggering for you. Proceed with extreme caution.
Ulcerative colitis is a chronic inflammatory bowel disease (IBD) in which abnormal reactions of the immune system cause inflammation and ulcers on the inner lining of your large intestine.
Source: NIH
The Beginning of My Journey
I was someone who rarely took pills for most of my life — until I was diagnosed with UC. While I wouldn’t say my world fell apart, my life certainly did. The hardest part was managing frequent bathroom breaks at the office.
It was during the monsoon of 2017 that I received my diagnosis. I had to drink a colon prep solution to clear my intestines, allowing the doctor to insert a tube with a camera into my rectum for a closer look. They even took a biopsy sample for testing. Thankfully, there was no sign of cancer, though my risk is now six times higher than that of the average person.
Struggles at Work and Weight Loss
At the office, people often found me in the bathroom lobby rather than at my desk. The constant urge to go is one of the many symptoms of the condition — though the others are far more unpleasant and not something I’m ready to write about yet. Eventually, I quit the firm as well.
A year into living with UC, nothing had improved except for one thing: I had lost weight. People called me petite, and I truly was. This led me to consult another doctor, who prescribed a course of steroids. By the time the treatment was over, I had become obese, and my mind felt completely out of control. I even gave up cycling — the one passion I truly cared about.
Mental Health Challenges and Remission
It took me over a year to recover from the mental health challenges I faced. Finally, in November 2019, my remission period began. I decided to step out of my comfort zone and took the risk of pursuing an internship in Delhi as part of my post-graduation. During this time, I cycled more and rediscovered my passion. I even accomplished something remarkable — I completed a Super Randonneuring series in cycling, a set of long-distance events covering 200, 300, 400, and 600 kilometers, all within a calendar year.
Relapse and New Beginnings
I was also part of a growing e-commerce start-up, founded by people who shared the same passion for cycling as I did. Everything was going well — until December 2021, when I started to relapse. The horrors of UC returned, forcing me to leave the start-up and retreat into my shell.
Thankfully, a friend helped me secure a new job, which allowed me to pay my bills. But the reality was tough — my medical expenses often surpassed my food bills, sometimes reaching up to ₹10,000 a month, including doctor consultations.
The Ongoing Struggle
It’s been two years since the relapse, but I’ve never felt like I’m back to 100%. The symptoms come and go, making it hard to focus on other aspects of life.
Despite my hesitation, I went on a week-long trip to the Himalayas — mostly because my ex insisted on making it happen. Unfortunately, I lost a day, falling sick and missing the chance to visit the highest post office in the world.
A Glimmer of Hope
My doctor has started me on a new medication, Del Jak XR 11 mg, and it’s been working wonders. For the first time in ages, I enjoyed a beer and pasta. Oh, gosh, it felt amazing to indulge after such a long break!
I hope these good days last as long as they can. It’s a tough life when you’re constantly reminded every morning and night by your medications that this condition is incurable. Still, the good days are giving me motivation.
Finding Joy Again
I’ve started reading more, running, walking, and even playing badminton — saying “yes” to people instead of “no.” Lately, I’ve been catching up on history and self-help books, and I’ve even tried my hand at writing a few posts on LinkedIn.
It feels amazing to live a normal life — a luxury I don’t take for granted.
