Tearable but not rippable

IBS warrior story

Nikhil's Story

India

Age: 25-36

A little bit about my journey:

My Diagnosis

Inflammatory Bowel Disease (Crohn's Disease)

Time to Get Diagnosed

2 months

Year I was Diagnosed

2013

Sending Love to

Dr. Vineet Ahuja

Hospital I'd Recommend

All India Institute of Medical Sciences

This is my story:

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. 🙂

Let’s play 20 questions:

The song that keeps me going is:
Lose Yourself
I never leave home without my:
Phone, Wallet, Backpack
My go-to feel better movie is: 
8 Mile
If I was in the hospital, the celebrity I would most love to visit me would be:
Neil deGrasse Tyson
When I need to relax, I:
listen to good music and lie down
My favorite food is:
Dumplings
The quote that keeps me going is:
In the fell clutch of circumstance, I have not winced nor cried aloud. Under the bludgeonings of chance, my head is bloody, but unbowed. It matters not how strait the gate, how charged with punishments the scroll, I am the master of my fate, I am the captain of my soul.
When I need a laugh, I:
talk to my friends
Meet my pets (or favorite stuffed animal):
My hero is:
Claire Wineland
When I’m having a down day I binge watch:
anything that I've watched in the past and liked.
My favorite book to get lost in is:
The Feynman Lectures on Physics
I want to be best friends with:
Neil deGrasse Tyson
The thing I’m most proud of:
the fact that I managed to survive
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
I have become hopeful
The most hilarious thing that has happened to me is:
my 4th grade math teacher hanging me upside down to get the class to understand Reciprocals!
It really means a lot when someone does this:
Listens
My favorite social media account to follow is:
TED
The advice I would give to myself back at the beginning of this journey would be:
Have faith
Words of encouragement that I’d give to my fellow warriors are
Never back down
Follow my journey: Read my articles at https://www.ccyanetwork.org/blog and my instagram handle is - thechickheartedboy

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