WANTOK which in our national language (Pidgin) literally means "Speakingthe same language" and is also commonly translated as "Friend".Although I joined MeetAnOstoMate a year or so ago I haven't been able to reador share my own experiences mainly due to lack of internet services in our country.When I joined this group, it was through an internet cafe, which later closedbecause it was too expensive to run in a country where the internet andinternet cafes, for that matter, are a new phenomenon.
I had this opportunity to travel overseas and having the access to internet andhave been reading all the experiences that my wantok ostomates aresharing. Being the only one from my country, I find it a littlelonely. Coming on line and seeing all the ostomates sharing freely hasmade me feel I have come home and found my wantoks speaking the ostomatelanguage.
It has been three years since my surgery. I had never heard of a colostomy, ileostomy,urostomy or ostomate in my life until I became one. Since I was diagnosed withthe cancer of the rectum and at stage four, it had to be removed. Thedoctors had given me two weeks of life.
Now with God's miraculous wonders He has given me 3+ years and I'm so thankfulto Him. He receives all my praise and all the friends and family memberswho made it possible for me to have surgery overseas. Though we have surgeons,there are no specialists in this type of major surgery so sought forneighbouring countries services. A private hospital of our closestneighbouring country fees were unaffordable and was giving up hope.
An overseas Mission heard of my plight and sent my medical reports to aChristian Hospital. Within days of my arrival, on the 7th of July, I had mylife saving surgery. I thank Chang-Hua Christian HospitalSuperintendent, the Board Members, the doctors who made a decision tomeet all the costs of my surgery. I had a colostomy within 11 hours.that is why, now I know more about the "STOMY " words. I livewith it.
After surgery, I was so depressed I just wanted to die. Coming from asociety that believes in superstition and sorcery, I knew society back homewould not accept me into the community. Stigmatising was my greatest fear. Ididn't know how my own family members would react to my new condition.
As for caring for the stoma I was introduced to dressing the stoma withonly gauze and surgical tape that allot of times I had disasters. Sometimes Ihad to rush back to the house since we don't have public restrooms in ourcountry. In the developed countries the state provides access for disabilitiesso you are able to move freely with the rest of the community.
I searched the net for colostomy pouches and SALTS HEALTHCARE LTD came to myrescue. They have kindly supplied me pouches for the last two years. Sincethese pouches are not easily accessible in our country I have to order themfrom overseas.
I didn't want to sit back and feel sorry for myself. I wanted to have anawareness campaign about this sickness and I got the media to tell my story.After reading my story I received so many calls from people who were sufferingsilently from this sickness.
There was one young woman who called me because she didn't have any pouches touse for her stoma. Now I knew I wasn't the only one in the country. I gave herfive months of supply from the donations made by SALTS HEALTHCARE to me.
At the end of last year, I went to the General Hospital to find out if thehospital had any endoscope as I had not gone back for my review. I discoveredthat the machine they had was giving blurry pictures so the doctors couldn't diagnosethe sickness. As I was about to leave the doctor asked me to see a patient hewas reviewing. He was a small two year old who had a stoma. The mother had onlya towel nappy to cover the stoma. It was such a sad sight it brought tears tomy eyes. It can very easily get infected. The doctor told me there are twentyother children who live with the same condition.
Most of our people are subsistence farmers and cannot afford to get pouches fortheir little children. These families come from the poor communities.
I have been searching the net for children's pouches but so far only had oneresponse. I am also seeking for any returnables or any overstocked suppliesthat you don't need anymore. It can be children or adult pouches. EarlyMarch the staff at the hospital told me there were two patients with colostomy.I wrote a letter to the CEO for his approval for me to visit and am stillawaiting his response. There are several others which I learnt recently but dueto their privacy rights I respect and leave them be.
I have registered the PAPUA NEW GUINEA STOMA ASSOCIATION and am looking forwardto launching it on the 8th of June. It was registered 2 years ago as partof my awareness campaign and for the future generation. It will also be a placewhere ostomates can freely come together to share the difficulties faced or toshare ideas for a better living. It will also be a place where ostomates cancome to collect their medical supplies. Since the hospital cannot accommodatethe needs for ostomates, this would be an ideal place for them go to.
This is a CHARITY ORGANISATION. I don’t know how long I may live so Ifeel this is a start for any current or future ostomates of this country, PapuaNew Guinea.
Thank you WANTOK OSTOMATES for reading my long story.