~OYC Trailblazers~ Harman’s Story from India

By Harman Singh Randhawa

My battle with ulcerative colitis began in 2003. I was 20 years old and in my 2nd year of studying Engineering. By the time the diagnosis came through, I had already lived with pain and inordinate trips to bathroom for more than 6 months.

Ignoring my painful symptoms and the discomfort that came with it, I kept delaying getting a thorough checkup. I started experiencing bloody diarrhea for many days. Finally, it was my sister who decided that the situation had gotten out of hand and drove me to PGI Hospital in Chandigarh in Punjab, India. I underwent a few tests and when the blood test report showed my hemoglobin had dropped from 13 gm to 8 gm, my doctor advised me to be admitted to the hospital immediately. After a series of further tests and a colonoscopy, I was diagnosed with ulcerative colitis, an autoimmune disease whose actual cause is still unknown in the medical world.

UC affects and drains you both mentally and physically. I would rush to reach the toilet but would find myself unable to hold it and would end up soiling my clothes. This happened to me quite often for about a month after my diagnosis. Upon discharge, I remember my doctor telling me UC can affect anyone, anytime in life irrespective of age and I can live my life as a normal, healthy person if I continue to take care of my body with medication, a balanced diet and regular exercise.

I was prescribed some medicines and doctor visits were scheduled every 6 months. For the next 6 years, even with medication, I had to use the toilet 6-7 times a day, which caused a lot of embarrassment. Over time, I went into clinical remission and lived a normal life till 2015. However, life had other plans. Owing to some personal issues, I underwent a period of heavy stress and anxiety. My UC started flaring up again. I started making 4-5 visits per day to the toilet. The stress coupled with the mood swings due to my medication made me have extreme thoughts. I started doing a lot of stress eating, filling my body with a lot of junk and fatty foods, all of which affected my colon again.

I had been advised by my doctor in 2010 to get a colonoscopy and/or sigmoidoscopy every 2 years. As of today along with the regular medication, I have completed 5 colonoscopies in last 8 years. The last one in March 2019 showed some signs of UC with mild inflammation and ulcers.

The other awful thing that happened to me in 2007 (possibly as a side effect of medication or related to underlying UC itself) was the skin problem known as psoriasis. Psoriasis sent me into a deep state of depression. I was stuck inside my home for almost a year all because I felt too embarrassed to go outside and interact with people. I was worried about how people would react when they saw my psoriasis and if they would poke fun. After trying all sorts of medicines and ointments from various dermatologists, I visited the dermatology department in PGI Hospital in Chandigarh and the doctor advised me to undergo two sessions per week of Ultra Violet Therapy for a total of four weeks. To my great relief, this worked and I was able to get permanent relief from psoriasis.

Alongside UC and psoriasis, I also developed a condition called extrahepatic portal vein obstruction (EHPVO). EHPVO refers to the obstruction of the extrahepatic portal vein. It is a liver condition that presents with symptoms similar to UC in many ways: abdominal pain, fever, diarrhea, rectal bleeding, and distention, among others. There is also the risk of variceal bleeding when the portal vein ruptures. It is something I live in fear of everyday.

I have to undergo a sigmoidoscopy and upper endoscopy one after the other on the same day every 2 years. That’s not easy at all because in India, anesthesia is not commonly given to patients for performing these procedures so laying on the table with my eyes open and undergoing an hour-long test for both scopes is terrible and leaves a lot of trauma. In my last endoscopy, my doctor had to rush his staff to put an oxygen mask on me while the endoscopy tube was in my mouth. During the procedure, he realised I was losing my breath due to the pressure on my veins. You see, variceal bleeding can easily occur when intubated and being awake during these scopes fully aware that a vein could rupture at any moment is no easy task.

All in all, I had no idea how these conditions would affect my life, but soon I realised that living with chronic illnesses was going to be the biggest challenge of my life. I was very much scared to live with health issues that may never go away. But in all of these diagnoses, I think the biggest trauma that many patients and I deal with is when people don’t understand colitis and make fun of the regular visits to the restroom. Even my close friends and family members joke about it and laugh upon seeing my panic and desperation looking for the bathroom when we go out or after a meal. It is extremely hurtful when people make fun of your situation without any understanding of the underlying cause.

IBD is a problem that causes mental agony and societal embarrassment apart from the physical pain for those afflicted. The unpredictability, uncertainty, and chronic course of the disease can cause a wide range of psychological and interpersonal concerns to patients and their loved ones. Jobs, education and marriage are often worries for many IBD patients in India. The lack of health insurance and awareness around IBD in India make it difficult for people to understand what we are going through. For example, my parents were very anxious when the doctor asked me to get admitted in the hospital at the age of 20. The diagnosis of 2 diseases, EHPVO and UC, side-by-side took a toll on my mother as she worried about what her son’s future might look like and wondered how all of this happened so quickly right in front of her eyes.

But there is a lot of hope on the horizon too. I would like to thank Dr. Dhiman who has been looking after me from the last 16 years and has always been motivating me to remain positive. There are so many good people whom I met with and spoke to in the Ulcerative Colitis groups and Crohn’s & Colitis Foundation Community on Facebook, especially Tina Aswani Omprakash. I thank her for all the advice, support and understanding. She is a true warrior and inspiration to many people around the world in our fight against these ailments.

So when Tina asked me how I own my ulcerative colitis and EHPVO, I had to say that living with these diseases has made me realize that every single day is a blessing and it is important to live life to the fullest. I hope a cure can be found for IBD soon and that the many people who suffer from it will have a permanent solution.

Good Luck & God Bless!

*In recent years, rates of IBD in racial and ethnic minorities from around the world have been growing by leaps and bounds. As such, it is important to recognize that many countries don’t have the care or awareness around IBD that many developed countries may have. That’s why it is so important to shed light on IBD journeys from around the world. #IBDBeyondBorders

**A shortened version of Harman’s story was originally published by the Crohn’s & Colitis Foundation on World IBD Day, May 19th, 2019: https://medium.com/@MichaelOsso/what-its-like-to-live-with-ibd-around-the-world-b5174d0a7826

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