At 26, Dinesh Kundnani, a resident of Surat, Gujarat, had big plans and dreams for his future. Maintaining a healthy lifestyle, he abstained from alcohol, smoking, and sugary drinks. Initially, the issues began with severe constipation and discomfort during bowel movements. Despite adhering to doctors’ advice to exercise, eat fibre-rich food and stay healthy, he found no relief. “It got so bad, that I used to scream in the washroom, and be afraid of eating anything, in the fear of what would happen afterwards,” he recalls.
During a working day in the office, he recalled suffering from so much pain that he begged his parents to find a fix. After many more doctor visits and tests, he was diagnosed with stage 3 colorectal cancer.
According to the World Health Organization (WHO), Colorectal Cancer is the third most common cancer in the world. They also claim that colorectal cancer is often diagnosed at advanced stages, which in turn, limits the treatment options.
For a deeper understanding of what Dinesh and many others battling colorectal cancer deal with, OnlyMyHealth got in touch with Dr Paresh A Jain, Consultant Colon and Rectum Surgeon - Clinical Lead, Robotic Oncosurgeon, and attached to Sir HN Reliance Foundation Hospital and Research Centre, Mumbai. His insights are under the ‘doctor speaks’ section in this article.
A study conducted in 2013-2014 and published in the National Library of Medicine (NLM), said that, “The Age Standardised Rate (ASR) for CRC in India is low at 7.2 per 100,000 population in males and 5.1 per 100,000 population in women. However, in a country with a population of a billion plus people, the absolute number of patients suffering from CRC is large.”
Also Read: How Your Bowel Habits Change With Colorectal Cancer: Symptoms To Note
This feature is a part of our series ‘Survivor Stories’, featuring people who’ve combatted or are living with various diseases or ailments. We combine their personal experiences with inputs from experts and specialised doctors, ensuring that you get credible and authentic information.
Dinesh found the strength to deal with the next few months of the treatment-related pain, thanks to his compassionate doctor, who reassured him that he would overcome the challenges.
Doctor Speaks:
“Colorectal cancer is the third most common cancer in the world. The rate of incidence is going up. Instead of cancer prevention, we’re now stressing on cancer screening, because we’ve learnt that it is really difficult to prevent this cancer from coming up. Even if individuals lead healthy lives with no bad habits, this cancer may still come up. That's why we shifted our goals to early detection. This cancer in most cases is detected late, and unfortunately, 63% of cases are detected in Stage 3.”
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Symptoms of Colorectal Cancer
For Dinesh, extreme pain during bowel movements was the most concerning symptom of colorectal cancer. This didn’t go away despite trying a healthy lifestyle and medication to relieve the constipation.
Doctor Speaks:
So after the age of 40, everybody should have basic annual health checkups done. And after the age of 55, once in every 10 years, a colonoscopy should be done. These are the basic standard guidelines for the normal population. In case of high risk categories, if there is a family history of breast cancer, uterus cancer, or pancreatic cancer then screening should start around the age of 40.
The symptoms basically start with your bowel movements being a little irregular, sometimes people get constipation and sometimes diarrhoea and blood in the stool. Now this is the most common symptom and it often gets confused in an Indian scenario with piles or haemorrhoids. The chances of a person getting colorectal cancer is one in 19.
Rather than restricting yourself to a family physician if you see blood in stool for more than 2-3 weeks, get your health check-up done.
Also Read: How NOT To Mistake Colorectal Cancer For Common Gastrointestinal Disorders
Getting Treated for Colorectal Cancer
In the initial phase of treatment, Dinesh had to go for radiation therapy. He said, “The hospital was 15 km from my house, and travelling in the peak of summer every day for a month was quite painful. My family didn’t have a car or anything, so I used to travel on my dad’s two-wheeler every day,” he recalled, “My skin also got burnt in bits due to the radiation.”
Post radiation phase, Dinesh had to undergo a surgery. Due to colostomy, (surgical removal of a large portion of his digestive tract), he was recommended using a colostomy bag for the rest of his life.
Post surgery, he also had to undergo chemotherapy, to ensure the cancer doesn’t revive.
Doctor Speaks:
Surgery, chemotherapy and radiation by specialised doctors are the treatment options for patients. Surgery is usually needed for all kinds of intestine cancers. Chemotherapy and radiation are decided based on the stage and nature of the cancer.
Parents Gave Me Strength
Dinesh realised how difficult it was for his parents to see him go through this in the initial days. His father would take him on his scooter to the hospital for treatment and visit doctors and clinics while seeing his son suffer in pain.
“I believe when you see someone you love so much, going through such pain and suffering, it's often harder than the ones suffering, and seeing my parents have that courage gave me the motivation to continue fighting against the deadly disease,” he said.
“I was a Marvel fan, and superheroes never give up, right? That’s what I reminded myself,” he chuckled.
Living and Dating with a Colostomy/Stoma Bag
A stoma bag or a colostomy bag is attached to a person’s intestines to collect faecal waste from the body. It’s generally attached to the side of the stomach, outside the body. Living with a colostomy bag post his cancer treatment, Dinesh’s life took a significant turn.
“It can be mentally exhausting because whenever you go out, you may have to explain to people that this isn’t in your control and sometimes it may be smelly or they may hear a fart, but that’s not in my control,” explained Dinesh.
Especially dating has been a rollercoaster ride for him. He faced many reactions, ranging from shock to rejection when he revealed his stoma bag, but he accepted all those reactions as legitimate responses.
Also Read: Colorectal Cancer Signs And Dietary Changes To Reduce The Risk Of It
“Once a girl joked that ‘wow, we have to go to the washroom to relieve ourselves and you can just do it wherever you want?’ And we both laughed about it,” he shared.
However, Dinesh shares that the hardest bit of using a stoma bag is getting used to emptying, cleaning, and reattaching it. He said, “My dad used to do it for me initially, but it made me feel ashamed. I realised it would take me a long time to change the bag but now I can do it even in a moving train.”
He adds that the expense attached to stoma bags is quite a bit, and may be a financial burden for many. Depending on the bag, pricing would differ, but on average, a person would end up spending around Rs 20,000 per month.
“My parents are still being asked ‘will your son ever manage to get married? How will he have children?’ They answer that it is my choice and others shouldn’t interfere,” said Dinesh.
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Doctor Speaks:
Socially, the most significant obstacle of having a stoma bag is the stigma associated with it. For patients, it's a little change of lifestyle and stool gets collected in this bag, but apart from that there is no major change in the body. It's about a mental acceptance that this is the new anus. Your urination is normal. A stoma bag doesn’t affect your sexual activity. Bathing, playing sports, being at work, and wearing clothing doesn't get affected at all. With the new type of waterproof bags and glue, you can swim too! Sometimes people say I can’t enter a religious place with this. But there is nothing dirty about a stoma bag, it's just another way to relieve stools. If nothing is ‘dirty’ about entering a temple with stools inside your body, there is nothing different about entering it with a stoma bag.
The Social Media Impact
Dinesh urges everyone to view cancer and its treatment as not being the end of life.
To normalise colostomy bags, he posted a picture daily for an entire year, showing him going about his regular activities while wearing the bag.
He concluded his every post with “P.S. I'm showing my colostomy bag every day, 365 days, to tell you that you are not alone in this world.”
He gets many messages and responses from people going through a similar journey, asking for help, requesting details of the kind of bags he uses and where he sources them from and sometimes praising him for motivating them through his posts.