Monday 17 September 2012

This surgeon has lived with stoma bag for 30 years

Mumbai doctor now counsels patients to help them cope with living with external waste pouch
By Melissa Pang, The Straits Times, 16 Sep 2012

It was a life-saving procedure, but also one that ultimately caused a patient to take his own life.

An Italian man in his 30s had his cancerous intestines removed and a stoma - an opening which connects an internal organ such as the intestines to the body surface to allow waste to pass out - created.

The treatment was a success, but the patient committed suicide six months later. He could not come to terms with having his waste empty into a bag outside his body.

Patients with a permanent stoma live with a plastic pouch stuck to the body by a special adhesive. The bag has to be emptied or replaced regularly.

Living with a stoma is disfiguring and affects a person not just physically, but also psychologically, socially and financially, when he has to buy bags all the time, said ostomy expert Harikesh Buch.

The 65-year-old Mumbai-based surgeon would know, having lived with a stoma bag for the last 30 years. As vice-president of the Asia South Pacific Ostomy Association and former head of the International Ostomy Association, he has also seen ostomates - people who live with stoma bags - from all walks of life and with all sorts of problems.

He helps set up support groups and conducts post-ostomy training programmes in the region, with funding from Danish stoma bag manufacturer Coloplast's Healthcare Fund for Third World Countries. Through this fund, projects to reach out to those unable to afford stoma bags are started.

Many ostomates suffer because they cannot afford the appliances.

Individuals are thrown out of their own homes because they smell of stool, and children can't go to school and end up reclusive and illiterate.

"You cannot lead a normal life (without a stoma bag). You wouldn't be sitting next to me. Without appliances, life is miserable. Absolutely miserable," said Dr Buch in an interview last month, ahead of a World Ostomy Day seminar. The event, to be held at the RELC International Hotel on Sept 22, is jointly organised by the Singapore General Hospital (SGH) and the Singapore Cancer Society.

Dr Buch, who was 29 years old when he underwent a colostomy after being diagnosed with advanced rectal cancer, has seen patients who cannot pay for stoma bags improvise with aluminium drink cans, coconut husks and plastic bags.

In Singapore, about 30 to 50 people undergo a permanent or temporary ostomy every month. The latter, which is more common, is done to allow a recently operated area to heal, said SGH's colorectal department consultant, Dr Chew Min Hoe. Patients who would need a stoma include those with irritable bowel disease or colorectal cancer.

SGH senior nurse clinician Ong Choo Eng, who specialises in stoma care, said patients are counselled before the procedure. Patient ambassadors are also called on to share their personal experiences.

"We try to find matching profiles to highlight that they are not alone, are still normal and to paint them a positive picture," said Ms Ong.

Stoma bags can cost between $20 and $60 a month, and help is available for those who need financial assistance.

Last week, Coloplast announced a subsidised package in which a two-month supply of bags will be sold at a discount of about 40 per cent to needy patients.

But with stomas, it is not just about treating the disease. Patients need to be able to accept their condition.

Said Dr Buch: "The incident involving the Italian patient made his doctor realise that yes, we are treating the patient, we are curing the disease, but we are not doing anything on rehabilitation. That was when he decided we had to do something."

Recounting his own experience, Dr Buch said he was "devastated" after his diagnosis and worried about whether life could continue as it was and if he could still be a surgeon.

It was only after he met another surgeon in Mumbai who had also had a colostomy that he felt assured. It did not take long for him to get used to living with a stoma bag, thanks to support from family members. But as with every stoma patient, there were initial concerns about whether others could hear the crinkle of the stoma bag and if there would be leakage.

The bachelor had planned to get married around that time, but as his prognosis was poor, he dropped the idea.

Now, advocacy work is his focus.

The general surgeon makes it a point to counsel every stoma patient personally in the two Mumbai hospitals that he works at, spending more than an hour with each of them.

He answers their questions patiently and ends the session by revealing that he has lived with a stoma bag for more years than he has lived without one.

The point, he says, is to show them that "at the end of the day, a normal life is possible".

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