October 5 is World Ostonomy Day. In coming weeks, I will be posting stories to help the PNG Stoma Association create greater awareness on the plights of Ostomates and their caregivers and for individuals to be informed of Bowel Cancer, a silent killer in PNG.
The birth of PNG Stoma Association was the result of the passion of Janet Yaki, a bowel cancer survivor who used her journey of recovery to courageously reach out to lift others out of the depths of despair to a life of hope. This is her story.
“Ostomate patients are using nappies, towels, pieces of cloth or diapers to wrap around their waist to collect waste. Some even use plastic shopping bags”.
This sad state of living has been a motivating factor for Janet Yaki to go beyond all odds to give fellow Papua New Guinea’s like herself, the dignity to live a normal life.
It’s been a long and hard journey for Janet Yaki, an Ostomate who now lives with a colostomy and the founder of PNG Stoma Association. Ostomates are people who have had surgery and a Stoma is formed on the outside of the abdomen for the release of waste. It can be a ileostomy, (small intestine) colostomy (large intestine or colon) and urostomy (bladder/urethra)
In a developing country like PNG, delivering health services is a nightmare. Given the geographical nature of the country, the high cost of medical services coupled with poor or non existent of facilities makes any form of illness almost like a death sentence. Even a normal reproductive function like pregnancy is in itself a risk for any woman.
But for diseases like cancer of the colon, there is no information, no treatment and no support for anyone diagnosed with the disease-basically, you are on your own.
Janet says, I didn’t know the symptoms of cancer of the colon and I don’t think many people do.
“First I saw signs of blood in the stool. I thought it was from a cut from constipation so I didn’t tell anyone, even my own family. I kept silent as I was too ashamed to seek medical attention. Ten to fifteen years passed. By that time I felt very disturbed as I was getting weaker”.
“When I felt the urge to go to the toilet, I had so much pain and was passing blood. I started to eat less and began to lose weight. The pain was unbearable; I couldn’t endure it, it was so excruciating. I visited the toilet every time I had the urge. There was so much pain and blood; I didn’t have much sleep at night. By the time I visited the hospital, I was at stage 4 cancer, which I can only describe, as at the point of no return”.
“At the Pacific International Hospital (PIH) they didn’t have a colonscope to establish the extent of the cancer, so they referred me to Port Moresby General Hospital. The General Hospital had the only colonscope in the country”.
“Since this was the only machine to cater for the whole country, my appointment was delayed by another month. While waiting for my appointment, the cancer got worse and my body was deteriorating. I didn’t have long to live. I was utterly stressed and disappointed as it was a life or death situation for me. By the time my appointment day came, I went to see the doctor only to be told the machine had malfunctioned. I was so depressed”.
“My doctor couldn’t tell the extent of the cancer so surgery was impossible. He recommended for me to seek surgery overseas in which some good Samaritans came to my aid and paid for my expenses for surgery at the Chang-Hua Christian Hospital in Taiwan. As it was life threatening, the surgery was done within 4 days of my arrival there. I thank GOD for He made all this possible. I was so lucky God was on my side. He made it possible for me to have an 11 hour surgery at Changhua Christian Hospital in Taiwan”.
“Living with a Stoma now has been my second chance of life. I feel God had a purpose for me this time round. He wanted me to see the silent suffering of the patients who live with a Stoma”.
“This experience has greatly motivated me to do something to help others who have been made victims by the lack of adequate medical facilities in our public hospitals. The majority of our population who cannot afford to go to private hospitals are suffering and dying”.
In 2011, Janet Yaki registered the PAPUA NEW GUINEA STOMA ASSOCIATION. A key objective of the association is to raise funds to buy a colonscope or Endoscope. This equipment helps doctors detect the disease at an early stage which may help save lives. The machine consists of a camera which is inserted into the digestive system to detect the extent of the cancer or any other disease that attacks the digestive system.
The PAPUA NEW GUINEA STOMA ASSOCIATION aims to meet the daily medical needs of ostomates. “Since we don’t use toilets any more, we have pouches attached to the stoma to relieve ourselves. We use one pouch a day for those of us who do irrigation, a method used by putting a litre of water to flush out waste. Those who do not do irrigation use eight (8) to ten (10) bags a day; this is expensive as one bag costs twenty seven kina (K27.00) at the local chemist”, says Janet.
“The Port Moresby General Hospital has twenty seven (27) little children with more new cases from each visit who have nothing to cover their stomas so the mothers use a towel nappy to cover the opening (Stoma). It is a sad situation. The hospital is unable to provide bags”.
In January 2013, Janet donated twenty (20) boxes with thirty (30) pouches in each box for the little children and ten (10) boxes of thirty (30) for adults.
“This was only a month’s supply or less for each patient. They will need more for the remaining eleven (11) months and the rest of their living years,” she says.
“I met Paul, a 2 year old little boy who went for the review of his stoma. The Doctor said there are more of the same. Their parents can’t afford the K6,480.00 a month.”
“Because of the painful experience I went through, I would like to give a chance to those who are suffering silently as they cannot afford the extravagant costs in medical treatment and the medical supplies overseas. In our society most of us who live with these conditions are stigmatised so we suffer silently.”
In order for a person to live a normal life with these conditions, ostomates use special bags. They are ileostomy, colostomy and urostomy bags. In the developed countries, these bags are readily available to their patients. They have associations in major cities and towns that are easily reachable by patients and have a constant daily supplies to cater for their needs and live life as normal as they can.
In PNG it is not the same. These Ostomy supplies are not readily available.
Janet was burdened to help fellow Papua New Guineans after she saw the plight and the sufferings of people affected by this disease. She said, adult cases are more to do with bowel cancer but all the children’s cases are due to birth abnormalities where they are born without an anus or a small opening. Doctors have to perform surgery to create an opening to save these children. That is the whole reason why all the children have a stoma.
“They were using nappy, towels, pieces of cloth or diapers to wrap around the waist to collect waste. The flow of the waste is uncontrollable so it sits directly on the skin. Waste that sits directly on the skin can burn the skin. Most cases have infections around the Stoma and there is more discomfort in a patient. Recently patients from the rural areas around the country called me after my story was in the media. There are a lot of people suffering as they are too ashamed to seek medical treatment”.
“Several people called to say they use plastic shopping bags. It is a sad situation. I have tried to reach these people by sending them Ostomy supplies. I have approached pilots flying to the closest destinations or people flying to those destinations. God has made that possible. He touched the hearts of people to service the distribution right to the doorstep of the patients in the villages. Through the help of First Officer Michael Beier and his colleague at Airlines PNG I was able to send a patient in Goroka some Stoma bags.”
“Recently, a policeman came to PNG Stoma’s rescue by travelling from Hagen to Simbu with supplies for patients. To those patients it was a precious gift. They have removed the plastic shopping bags and are now using these special bags”.
“We know there are many out there who are suffering silently so anyone who knows of people living with Stomas’s please let us know so we can supply them with these bags”.
“This year, 2014, I have been visiting the clinic for the last three Wednesdays and have seen more suffering of ostomates, mostly children. It is heartbreaking to see parents taking their little angels to the doctors for reviews with the little one’s Stoma wrapped with cloth or diapers – most have been infected”.
The doctors are working under duress with what little they have to save the children. Colostomy bags are not available for the doctors and nurses to give to patients.
“Parents don’t know where to get them. I was privileged to attend the clinics. After review, the doctors send the patients to me. I have the chance to see the stomas, measure the size and give the correct size bags to the patients. I also showed the parents on how to use the bags”.
“I am meeting them personally and the relief on their faces tells it all. One mother brought her son all the way from Aroma in the Central Province. How grateful she was”.
“Last year when we supplied 7 months worth of colostomy bags to an adult female patient. She came back asking for more after only 2 months. Another was given a two month’s supply and he came back after 10 days. A patient uses 8 to 10 bags a day. Another was given a 6 month supply but came back asking for more after 3 days. She had diarrhoea therefore all the bags were used.”
“These patients are adults, who do not perform irrigation on a daily basis, as they were never shown how to by the nurses or doctors. I am planning to make a video on how to do irrigation, the method which I use that enables me to move around more freely. I only eat one meal a day which is dinner”.
“I have now started supplying some patients in the rural areas and the settlements with reusable bags. These bags can be washed thoroughly with disinfectants and used many times over. I asked those patients how they were doing with the reusable bags. Their feedback is a sad story in itself”.
“Having houses built of bush materials as is the case all over PNG, they do not have running water taps into their houses, no showers, no flush toilets, no hand basins, no power in their homes so these ostomates cannot wash and reuse the bags. The closest river or waterhole may be a kilometre or miles away so it is an unbearable life for an ostomate”.
The Stoma Association has received some support to assist these patients. There have been generous donations by the Gold Coast Ostomy Association, Ostomy Lifestyle in England, Rotary International PNG, Salts Healthcare in England, Amanda of Gold Coast and individual ostomates from England who have been sending the surplus they’ve had.
The Prime Minister Peter O’Neil’s Foundation donated one hundred thousand kina to the PNG Stoma Association to assist in their quest to supply people with the bags. They are grateful for these generous donations as it will go a long way to order more supplies from overseas.
“We order our Ostomy supplies for Salts HealthCare of Birmingham, England, as it is a lot cheaper than buying from our local chemist. Salts HealthCare have continuously assisted PNG Stoma Association with donations and even arranging banners for us. I would like to personally thank Mr. David Eagle and his team at Salts HealthCare”.
PAPUA NEW GUINEA STOMA ASSOCIATION doesn’t have an office so I work out from my family home. I don’t have a storage space to store the supplies. Right now my own bed is surrounded by supplies. Some patients have to queue up and wait to get supplies. Most would call me so I would go meet them at their place of residence or meet up at a central location to give the bags. Most times they call me from the ward so I would go visit them and supply them with bags. I also do counselling as patients are mentally traumatized after surgery as I was”.
If PNGSA had a distribution centre, patients could very easily come collect their Ostomy supplies and not have to queue up at the General Hospital to collect what they need. It would also be a place where ostomates come together to share ideas on how best to care for ourselves to live a normal life.
“Travelling on public buses is also very difficult and is very embarrassing with all the waste coming out uncontrollably. Standing in the queue for services like banking, shopping, marketing and other public places is very stressful as you are constantly aware of the stoma and how uncontrollable it is. In some situations it can become very humiliating. To make matters worse, we in PNG don’t have too many public restrooms so imagine how uncomfortable it is for an ostomate to do shopping etc. with the constant flow. There’s no place to go to change the bags”.
“As for the children, I wish and hope that one day they can have a constant supply which will enable them to go to school and have an education like any other normal child going to school, for their future depends on how we care for them now. Who knows among these children there could be some future leaders, only God knows”.
“The supplies we need are not a luxury or a want. It is a need especially for the unfortunate”, says Janet.
Our Motto:” ALL THINGS ARE POSSIBLE WITH GOD.” Mathew 19:26
Note: Anyone in PNG or overseas, who would like to help Janet Yaki in her endeavour to help the children and people living with Stoma can look up the PNG Stoma Association on facebook or email firstname.lastname@example.org
What is a colostomy?
A colostomy is an opening in the belly (abdominal wall) that is made during surgery. The end of the colon (large intestine) is brought through this opening to form a stoma. Where the stoma will be on the abdomen depends on which part of the colon is used to make it. Some colostomies are large, some small; some are on the left side of the abdomen, Some are on the right side, others may be in the middle. An enterostomal therapy (ET) nurse or the surgeon will figure out the best location for your stoma. (An ET nurse is a specially trained registered nurse who takes care of and teaches ostomy patients. This nurse may also be called a Wound, Ostomy and Continence nurse (WOC) or an ostomy nurse.)
When you look at a stoma, you are actually looking at the lining (the mucosa) of the intestine, which looks a lot like the lining of your cheek. The stoma will look pink to red. It is warm and moist and secretes small amounts of mucus.
The way the stoma looks depends on the type of colostomy the surgeon makes and on individual body differences. It may look quite large at first, but it will shrink to its final size about 6 to 8 weeks after surgery. The shape will be round to oval. Some stomas may stick out a little, while others are flush with the skin.
Unlike the anus, the stoma has no valve or shut-off muscle. This means you will not be able to control of the passage of stool from the stoma, but sometimes bowel movements can be managed in other ways. There are no nerve endings in the stoma, so the stoma itself is not a source of pain or discomfort.
A colostomy is not a disease, but a change in the way your body works. It surgically changes normal body function to allow stool to pass after a disease or injury. Although a colostomy is a big change for the patient, the operation itself is rather simple. Digestion and body chemistry are not changed by a colostomy.
Why have a colostomy?
Colostomy surgery is done for many different diseases and conditions.
Certain lower bowel problems are treated by giving part of the bowel a rest. It is kept empty by keeping stool from getting to that part of the bowel. To do this, a short-term (temporary) colostomy is created so that the bowel can heal. This may take a few weeks, months, or even years. In time, the colostomy will be reversed (removed) and the bowel will work like it did before.
When part of the colon or the rectum becomes diseased, a long-term (permanent) colostomy must be made. The diseased part of the bowel is removed or permanently rested. In this case, the colostomy is not expected to be closed in the future.
What does a colostomy do?
After a colostomy has been created, the intestines will work just like they did before except:
The colon and rectum beyond the colostomy is disconnected or removed.
The anus is no longer the exit for stool.
Since nutrients are absorbed in the small intestine, a colostomy does not change how the body uses food. The main functions of the colon are to absorb water, move the stool toward the anus, and then store stool in the rectum until it is passed out of the body. When a colostomy changes the stool’s route, the storage area is no longer available.
The higher up in the colon the colostomy is made, the shorter the colon is. The less time the colon has to absorb water, the softer or more liquid the stool is likely to be. A colostomy further down in the colon, near the rectum, will put out stool that has been in the intestine a longer time. Depending on the effects of illness, medicines, or other forms of treatment, the longer colon can put out a more solid or formed stool. Some people with colostomies find that they are able to pass this stool at certain times of the day with or without the help of irrigation.
After surgery, some people still may feel urges and even have some discharge from the anus. This discharge is mucus, blood, and at times stool, left from the operation. If the rectum remains after surgery, it will keep putting out mucus that can be harmlessly passed whenever you have the urge.
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