Satish, a small-business owner hailing from rural northern India came to the general surgery clinic of a tertiary care hospital. He was in his early thirties, married, and with two children. Satish was diagnosed with cancer of his rectum and had finished the first part of the treatment which is a combination of chemo and radiation therapy.
He now required surgery for the removal of the rectum. The surgery would take away his ability to pass stools from the natural passage and instead, the stools would come out of the intestine through an opening in the abdominal wall known as a stoma. Not doing the operation would mean that the tumor would soon increase in size and spread to the other organs making it incurable.
“I am a panchayat member of my village. My work involves a lot of traveling and I need to be out almost the entire day. How will I be able to do my work with a stoma? The people in my village will never want to meet or talk to me. My family will not accept me. My friends will not support me. I will die but never have a stoma”- said Satish as he walked out of the OPD, never to be seen again.
Colorectal cancer is among the top three most common cancers in the world and it is becoming more and more common. Surgical treatment remains the cornerstone of management. Patients who have the tumor in the lower part of the rectum require removal of the entire rectum and anal canal which results in them having a permanent stoma. The management of rectal cancers has considerably advanced over the past years. However, there is still a subset of patients who cannot get away without a stoma.
When first explained about the need for a stoma, patients often feel that they will be incapacitated and their work-life would come to a standstill.
Rahul, an auto driver, was extremely worried if he will be able to work long hours after getting a stoma. Nearly everyone has the same query be it manual laborers, homemakers, officer workers, or drivers.
However, being incapacitated after a stoma is only a misconception according to experts. “A person with a stoma can do every single activity like traveling by air, working in fields, lifting heavy objects, and even swimming,” says a colorectal surgeon working in a tertiary care hospital dealing with 50-100 patients with stomas every month.
Just like every other disease, gender-related issues can be noticed even in patients with a stoma. Women with stomas tend to have worse quality of life compared to men which reflects inadequate family support in our predominantly patriarchal society. “Ever since I had a stoma, my husband stopped having intimate contact with me. He says he feels disgusted with the site of the stoma. He wants to leave me and remarry,” said Meena, a 28-year-old woman.
The stigma associated with the stoma is often compounded by problems associated with the fitting of the stoma bag. John, a 65-year-old teacher, complained that his stoma makes noises now and then. “The children laugh at me and make fun of me for it. Sometimes, the gas leaks out of the bag, and the whole classroom smells bad. This has lowered my self-esteem and has made me depressed,” said John who has been living with a stoma for the last 4 years.
Does a person with a stoma smell of stools all the time? Does a stoma make fart noises all the time? Does one need constant help to empty and change stoma bags? Are the bag and the stools always visible? - These are common questions that trouble patients who are adjusting to the thought of living with a stoma. However, there are ways to address all these doubts. A good-fitting stoma bag rarely leaks gas or stools. There are absorbent stoma bags available that absorb the gas released into them, thus, negating the chance of any gas leak.
The stoma bags need to be changed only once a week unless they become loose and they can be changed by the patients themselves. There are many teaching videos available online regarding the same. Although the doctors prefer to have a transparent bag in the first few days after the operation, it can then be changed to an opaque bag which can completely mask the visibility of the contents inside. Stoma bags can be easily fitted inside the clothing which does not hamper patients from wearing their regular outfits like sarees, kurtas, dresses, pants, and shirts.
Stoma doesn’t come with a psychological impact alone. The economic burden of managing a stoma cannot be disregarded. The stoma appliances and other equipment are of high cost and can significantly affect the lives of average Indians. “We travel two days by train and come here to buy stoma bags in bulk. We cannot get good quality stoma bags anywhere in our district and if we do, they are a lot more expensive,” told Ganshyam Prasad who has been traveling every six months to purchase stoma bags for the past 10 years.
“When I was diagnosed with cancer of the ovary, I did not have enough resources to pay for the treatment. Because the cancer had spread to the rectum, they had to remove that part and bring out a stoma. Now, my biggest expenditure is on stoma care. The bag costs Rs.150 and needs to be changed every 4-5 days. If I try to continue for another day or two, the area around the stoma starts itching severely. My family finds it very hard to support me financially,” told Jaya, an ovarian cancer survivor from a village in Tamil Nadu.
Our country is far behind in solving the stigma associated with stoma. Patients living with stoma face a huge dejection from their families and society. Research shows issues such as anxiety, and limitations in personal, professional, and social life lead to loneliness and depression in patients with a permanent stoma. They face complex psychological and sexual problems, dissatisfaction with altered body image, changes in daily routine, travel difficulties, and fatigue. However, support groups play an important role in addressing these issues.
“When patients see and interact with other patients who have a stoma and have been leading a normal life, their confidence improves. They sometimes require two or three sessions of counseling regarding stoma. It is very important to counsel the spouse and the other family members who need to support the patient,” said Mrs. Latha Madhan, a stoma counselor. Ram, a 65-year-old rectal cancer survivor, told how support from his family prevented the stoma from affecting his life negatively. “I get scared to look at it, so my sons have always been changing the stoma bags and managing it,” said Ram.
According to Dr. Rajat Raghunath, a colorectal surgeon at CMC Vellore, stoma support groups are uncommon in India. “Unfortunately, there are no awareness or support groups for stoma in India. Adequate measures must be taken towards such initiatives including ‘the stoma matrimonial platforms’ that can connect individuals who can care and relate to each other’s problems,” said Dr. Raghunath.
Cancer care is not just about giving chemotherapy or surgically removing the cancer. It is essential to address the changes that cancer brings in a person’s life - physical and psychological. Living with a stoma has its challenges that can be addressed to a large extent by adequate counseling by the treating surgical team, as well as the stoma care nurses before the operation. Almost all patients feel that having a strong support system either by family or friends is the most effective component of living with a stoma. It is important to look beyond cancer cure and help the survivors live a comfortable and dignified life.
All names in the article have been changed.
Edited by Parth Sharma
Image by Janvi Bokoliya
