I was diagnosed with ‘Crohn’s Disease with Crohn’s Colitis’, a form of Inflammatory Bowel Disease (IBD) on September 1, 2013. I was 20 and about to begin the final year of my undergraduate degree. I recovered within months, and all was well again. It was my relapse after a year in 2014, which forced me to pay attention to my condition. I failed drug after drug and eventually had to let go of my colon and ended up with an end ileostomy in 2017. My worst symptoms during this period were severe chronic pain, fatigue, and total incontinence.
Those years feel like a long nightmare at times. I was broke. My parents separated. I tried to end my life a couple of times. I was about to be sued by the banks for not paying my student loans. I got bedridden. My disease has truly tested me to my limits. I am not sure if I can go through all of that again. I have yet to process all that trauma and accept what happened to me.
I am very lucky to have survived. I owe my life to many people – my mother, my brother, my friends, all those people who contributed towards a crowdfunding campaign for me, the kind doctors and nurses. I am grateful to a lot of people for all their kindness and support.
Post my ostomy surgery, I faced a lot of stigmas and had to power through a lot of barriers. I couldn’t get a day job, so I worked a night job for 2 years. However, in 2019, I managed to get admitted into graduate school at the best institute in India – the Indian Institute of Science. I also bagged a seat in the 2020 Crohn’s and Colitis Young Adults Network fellowship program. The fellowship motivated me to do something for the patient community in my country suffering from Inflammatory Bowel Disease since we’re a highly neglected and stigmatized group of patients receiving no support in any sphere of our life from the government.
In May 2020, I along with five other fellow patients organized a series of talks on Facebook to highlight the issues faced by the IBD patient population in India and to educate the general population about the condition. We call ourselves the Crohn’s and Colitis Squad. Encouraged by a good response and appreciation, we have decided to work towards being an effective patient advocacy group for patients with chronic and invisible illnesses like IBD.
I would like to end by saying that no matter how dark and hopeless it seems, there is always a light at the end of the tunnel. Try your best to hang on. Hold on to your dreams, and never lose faith. I hope that you stay strong and that when you finally tell your story, it becomes a greater force of hope than mine. 🙂