Ostomates struggle for normal life
Dewi Santoso, Jakarta
Nine years ago, Zulkarnaen, once a happy man living with his wife and two children, came face to face with his worst nightmare when he found out that he had colon cancer.
He then underwent appendectomy as doctors told him he had appendicitis. Everything went well until five years later when he started experiencing an anal bleeding.
"I saw another doctor who told me that I had a hemorrhoid and prescribed medicine for me for three months," Zulkarnaen, 50, told The Jakarta Post here on Saturday.
The bleeding, however, did not stop, prompting him to see the doctor a second time.
"The doctor told me that I had colon cancer and that I had to undergo colostomy," Zulkarnaen recalled.
A colostomy is a surgical operation that involves the forming of an artificial anal opening from the colon.
"My life completely changed after the operation as I have to carry a stoma bag around my waist to hold stools, and it is all very embarrassing and annoying," said the father of two.
He said it was embarrassing because he had to carry the bag wherever he went, and annoying as he could not move as freely as he did before.
"I was afraid of the possibility that there would be an offensive odor, and I was afraid that people would be disturbed by this," said Zulkarnaen.
Then he slowly withdrew from society, locking himself up at home. Feeling alienated and alone, he experienced terrible mood swings.
"I became temperamental and got angry easily. Yet, my wife and children kept taking care of me, and that was what slowly made me realize that I should stop feeling sorry for myself and start appreciating the things that I can still enjoy," he recalled.
Now, he said, he was happy with his life and was enjoying every moment to the fullest.
Fellow ostomates Aryanto and Syarif also found themselves in a situation where they did not want to leave home as they felt ashamed of their conditions.
Data from the Indonesian Ostomy Association (InOA) show that there are approximately 500 ostomates (people who must carry a stoma bag around with them) in Jakarta alone, with around 100 new cases occurring every year. Nationwide, the number could be much larger as there are many ostomates who are not listed with the InOA.
Established as part of the Indonesian Cancer Association (YKI) on March 23, 2000, the InOA holds an annual gathering in Jakarta, where its members can share personal and technical experiences and also information on the various issues involved.
Budi Anna Keliat, an expert on the problem, family members play a pivotal role in opening the ostomates' eyes to see that they can still enjoy life even with stoma bags.
Zulkarnaen's wife, Marina, said, however, the problem now was the availability of stoma bags. "It's very difficult to find the bags, even if you have a lot of money, as they are available only in limited quantities," she said.
Dieta Parengkuan, an InOA coordinator, said that since the country did not produce the bags, Indonesian ostomates depend on donations from countries such as the United States and Australia.
A stoma bag consists of two parts: the wafer (the hollow skin- like ring that adheres to skin) and the bag (the plastic bag glued to the wafer). One box of wafers contains five wafers and costs Rp 350,000, and one box of bags contains 10 bags and costs Rp 600,000. An ostomate will have to spend almost Rp 1 million per month on the bags alone.