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No Colon, Still Rollin’

I always wanted to live a unique life. Little did I know God would make it an extraordinary one. Everything was going fine until the second year of my college in 2017, I was diagnosed with a chronic disease named Ulcerative Colitis and was immediately put on 52mg steroid dosage for 45 days to suppress the disease. I was experiencing severe diarrhoea and bloody stools. My condition was deteriorating with each passing day and I had to get admitted for a blood transfusion.

The blood transfusion was unable to improve my condition and on the flip side, I was diagnosed with Cytomegalo Virus in my descending Colon. My parents decided to take me to the Asian Institute of Gastroenterology, India for treatment. I was again put on a high dosage of steroids, and went through multiple colonoscopies and CT scans. The side effect of the CMV virus was such that I used to urinate more than 10ltrs of urine every day. Despite taking 22 pills every day, being on a total liquid diet nothing was able to relieve me off my distressing condition. The pain of living in a hospital that too in a different city away from siblings was pretty intense. So, we decided to come back home and my treatment started under a renowned gastroenterologist in my own city.  

At one point my body weight reduced to 36 kgs with nothing left inside me except a badass willpower. I couldn’t even open the cap of a water bottle, couldn’t even walk on my own, the haemoglobin level was down to 6.5, the protein and albumin levels were also extremely low, and whole of my lower body was swollen. My body became pale, and my hair started falling due to the high dosage of medicines.

After trying oral treatment for about a year, on 8th September 2017, I underwent an 8 hour long emergency surgery where half my colon was removed and I started living a life where the healthy end of my colon was hanging from my stomach. I used to wear a colostomy bag over it which used to collect my body waste.  

It took me a while to get used to this new lifestyle. A colostomy bag is not a usual sight in India. I started getting a lot of attention in college, amongst friends and family. Although my life was very restricted, my colostomy bag gave me a new ray of hope to my life. I started gaining weight, my digestive system was working perfectly fine. The only problem which I used to face was that I wasn’t allowed to lift heavy weights, couldn’t tuck my shirt, couldn’t play sports where too many individuals were involved. Airport security checks were usually exciting, I was given priority access to the lounge.

After a thorough check up and sigmoidoscopy, my doctors found out that the disease was still very much active in the rectum. I was put under Infliximab Intra venal injections treatment for 8-9 months. There wasn’t much positive effect in the rectum. 

1.5 years after my first surgery, I went through two more surgeries because life with a bag hanging from the stomach was difficult.

On 24th November, 2018, I underwent a very painful 10 hour long surgery where my entire large intestine and rectum was removed, and a new organ called a J-Pouch was created from my small intestine, which does 20% the job of large intestine. Now I was wearing an ileostomy bag on my stomach. I was lying straight on the hospital bed for 9 days with five pipes inserted inside my body, no water, no movement, nothing.  Those 9 days were the toughest days of my life. I had to prepare myself mentally as well as physically for that. On the 10th day, when I stood up, three nurses were holding me, my legs were shaking, I could feel blood gushing in my brain, the hollowness inside my abdomen. My mother was crying, but finally she was happy that I have fought a huge war. I was re-born. The first sip of water tasted like heaven.

The next three months I was preparing myself for the last surgery.

My ileostomy bag and I shared a very healthy relationship.

Just before the final surgery, I went to the Himalayas to enjoy the last few days of my bag life. My last surgery took place in March, 2019. A J-pouch was connected to my anal. I started living a Protocolectomy IPAA lifestyle. 

Life has been pretty different since then. Due to my condition, there are several things that I still can’t do including lifting weights, I use a washroom quite frequently, I have stopped consuming anything which is toxic, even coffee because caffeine dehydrates me. I did not let these restrictions limit my life and continued to explore ways to keep myself fit. Running and cycling have played a major role in my recovery. I still remember the invigorating feeling after completing my first 10k marathon. I do long-distance marathons or cycling every morning and I am training myself for the Ironman Triathlon and simultaneously ticking off too many adventurous things from my bucket list every year.

One piece of advice which I would like to share with all of you is that YOUR HEALTH IS THE BEST THING WHICH YOU CAN INVEST IN.

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