Chitra V. Ramani
Glen Williams, a urostomy patient, has been teaching others to lead a normal life
Bangalore: “My childhood was traumatic. I was always embarrassed and lonely. I had no friends and I have never played any games,” said Glen Williams. Looking at him today, it does not show. Mr. Williams is a urostomy patient and a stoma counsellor. He has been counselling urostomy, ileostomy and colostomy patients for nearly 15 years.
A urostomy is an artificial receptacle for the urinary system. It is required for patients for whom the bladder and urethra cannot be used to drain urine. An ileostomy is an opening created by bringing the end of the small intestine out onto the surface of the skin, near the abdomen, for the waste to pass out of the body. Ileostomies are necessary where disease or injury has made the large intestine incapable of processing intestinal waste. Colostomy is an opening formed by bringing the end of the large intestine out through an incision. After a colostomy, the waste is collected in a pouch attached to the patient’s body.
“I was born with a congenital bladder problem. I know the trauma that these patients undergo. I have had a terrible childhood because people did not know or understand my condition. My classmates poked fun at me.”
It was during those hard times that he resolved to be optimistic and dedicate his life to helping others lead a normal life with dignity.
“I have had nine major surgeries. The doctors tried to reconstruct the bladder, but failed. Finally, one doctor gave me a small pamphlet, which had details about urostomy. All I asked of him was to make me as normal as possible. I have had the urostomy pouch for more than 19 years now,” he said. He said that over the years, he has counselled more then 350 patients. “Almost 80 per cent of the patients are suffering from cancer. Quite a large per cent are from rural areas. What astounded me when I started counselling patients was the level of ignorance about the ailment even among the medical fraternity in the rural areas,” he added.
Mr. Williams said that the patients, both in urban and rural areas, are forced to undergo psychological trauma and social stigma. “All one needs is the will to overcome all the hurdles. The technology has improved now. Earlier, it was difficult to get the appliances,” he said.
“I meet patients every day in the morning and evening. In the afternoons, I do a bit of administration work at the Indian Medical Association. Whenever I meet patients, I try to instil in them confidence and dispel their misconceptions about the stoma,” he said.
He said that the important thing is to maintain hygiene to prevent infections, empty the contents at regular intervals, and change the bag/ pouch periodically to ensure there are no leakages or odour. “Sometimes, patients have just given up all hope. Then, I show them my own pouch. They are always surprised and astonished,” he said.
“I lead a normal life. I am happily married and have adopted a child. All I want to do is create awareness about the condition and work towards alleviating the suffering of patients. I work for an association, Ostomates India, which was formed with the same objective,” he added.