Creating Awareness and Support for Ostomates in Papua New Guinea

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walayapo
Hello Wantoks,

WANTOK, which in our national language (Pidgin), literally means "speaking the same language" and is also commonly translated as "friend". Although I joined MeetAnOstoMate a year or so ago, I haven't been able to read or 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 closed because it was too expensive to run in a country where the internet and internet cafes, for that matter, are a new phenomenon.

I had this opportunity to travel overseas and have the access to internet and have been reading all the experiences that my wantok ostomates are sharing. Being the only one from my country, I find it a little lonely. Coming online and seeing all the ostomates sharing freely has made me feel I have come home and found my wantoks speaking the ostomate language.

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 with the cancer of the rectum and at stage four, it had to be removed. The doctors had given me two weeks of life.

Now, with God's miraculous wonders, He has given me 3+ years and I'm so thankful to Him. He receives all my praise and all the friends and family members who made it possible for me to have surgery overseas. Though we have surgeons, there are no specialists in this type of major surgery, so I sought neighboring countries' services. A private hospital of our closest neighboring country fees were unaffordable and I was giving up hope.

An overseas mission heard of my plight and sent my medical reports to a Christian Hospital. Within days of my arrival, on the 7th of July, I had my life-saving surgery. I thank Chang-Hua Christian Hospital Superintendent, the Board Members, and the doctors who made a decision to meet 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 live with it.

After surgery, I was so depressed I just wanted to die. Coming from a society that believes in superstition and sorcery, I knew society back home would not accept me into the community. Stigmatizing was my greatest fear. I didn'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 with only gauze and surgical tape that a lot of times I had disasters. Sometimes I had to rush back to the house since we don't have public restrooms in our country. In the developed countries, the state provides access for disabilities so 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 my rescue. They have kindly supplied me pouches for the last two years. Since these pouches are not easily accessible in our country, I have to order them from overseas.

I didn't want to sit back and feel sorry for myself. I wanted to have an awareness 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 suffering silently from this sickness.

There was one young woman who called me because she didn't have any pouches to use for her stoma. Now I knew I wasn't the only one in the country. I gave her five 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 the hospital had any endoscope as I had not gone back for my review. I discovered that the machine they had was giving blurry pictures so the doctors couldn't diagnose the sickness. As I was about to leave, the doctor asked me to see a patient he was reviewing. He was a small two-year-old who had a stoma. The mother had only a towel nappy to cover the stoma. It was such a sad sight it brought tears to my eyes. It can very easily get infected. The doctor told me there are twenty other children who live with the same condition.

Most of our people are subsistence farmers and cannot afford to get pouches for their little children. These families come from the poor communities.

I have been searching the net for children's pouches but so far only had one response. I am also seeking any returnables or any overstocked supplies that you don't need anymore. It can be children or adult pouches. Early March, 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 still awaiting his response. There are several others which I learned recently but due to their privacy rights, I respect and leave them be.

I have registered the PAPUA NEW GUINEA STOMA ASSOCIATION and am looking forward to launching it on the 8th of June. It was registered 2 years ago as part of my awareness campaign and for the future generation. It will also be a place where ostomates can freely come together to share the difficulties faced or to share ideas for a better living. It will also be a place where ostomates can come to collect their medical supplies. Since the hospital cannot accommodate the needs for ostomates, this would be an ideal place for them to go to.

This is a CHARITY ORGANIZATION. I don't know how long I may live, so I feel this is a start for any current or future ostomates of this country, Papua New Guinea.

Thank you WANTOK OSTOMATES for reading my long story.

Wantok (Friend)
three
Hi Walayapo,

Thanks for sharing your amazing and inspiring story. You are helping so many!
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walayapo

Thank you three. You're my first wantok. Thank you for the encouragement.

StarUK

Hello Walayapo,
I am Australian although I live in the UK now so I know of PNG and some of the difficulties you have there. Have you approached any Australian companies for help? Also, if we have products, where could we send them? I am sure there are many people who would like to help if they could. We take access to stoma products for granted, not to mention access to adequate healthcare. Anyway, I would like to say welcome. I am feeling rather humble right now. I have taken too much for granted.



Star
walayapo
Hello StarUK,

Thank you for firstly responding to my story. Yes, I wrote to some of them when I was searching for colostomy pouches for myself. One of them referred me to SALTS HEALTHCARE LTD in England, so that's how I got my pouches. I am so thankful to them.

I am in Brisbane now, so I have this access to the internet, so I was able to tell my story. I only have one more day in Brisbane and then back to PNG.

If any generous heart would like to donate, our address is:

PAPUA NEW GUINEA STOMA ASSOCIATION

P.O.BOX 475

PORT MORESBY

NATIONAL CAPITAL DISTRICT

PAPUA NEW GUINEA.

If you or anyone else would like to find out more information regarding our association, you can email **** and also you can "like" our Papua New Guinea Stoma Association Facebook page as well following the link below:

http://www.facebook.com/pages/Papua-New-Guinea-Stoma-Association/472134952849892?ref=stream

Kind Regards,

Walayapo
 
Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
Beaner

Wantok, you are a very humble person, and I thank you for reaching out to the world, which you have just done. It is a very difficult road to take, whether alone or with help. Hopefully, you will get many responses to your plea for help. Your organization will get a response from me, for sure. As for you, I hope you get many more years to see what your outreach will do for others. Take care of yourself and know you are not alone. Beaner in the USA

walayapo

Hi Beaner, thank you for the words of encouragement. It enlightens me to know that there are lovely people like you with a big heart to understand the difficulties other people face. I thank you for seeing that in my endeavors even though you face and live with the same condition as the rest of us ostomates.



I am so privileged to have come across the MeetAnOstomate site because I have been able to share my story.



It is a pleasure meeting you here and looking forward to sharing more in life as an ostomate.



Thank you again.



Kind regards.



Wantok

Past Member

Hello Walayapo,

Thank you for sharing your experience and willingness to help others in need. I am currently in Australia as I have a rare blood condition, which I'm receiving treatment for. However, my bladder 'died' last year and I have a urostomy. I'm not sure if you've heard of the Stoma Association of Queensland, but you can approach them and ask for any returns and I'm sure they will help you. Their phone number is 3359 7570 and they can give you all the other details you need, such as address etc. I have a friend who is over here from an island in the South Pacific and she has a colostomy bag and receives returns from them. Good luck Wantok, and many blessings. Jeanette

Immarsh

Hello Walayap,

Your experience and your story brought me to tears.

I had my surgery more than 50 years ago when I was only 15, and back then, it was so unusual for a young child to have ulcerative colitis, much less surgery.

I am so glad you were able to get the help you needed for the surgery and for the necessary supplies that make life worth living. I hope you live and enjoy whatever time you have.

Before there were "stoma nurses," it was people who had ostomies that went to visit and help others facing and living with the surgery, learn how to use the supplies. I did that when I was 18 and continued to do it until the medical community realized that this was such an important need.

I have a lot of unused ostomy supplies and have a friend in another part of the country who has cartons of unused supplies. We just don't have the money to ship it to Papua, NG.

But I'm going to work on finding a way, and I've written to friends who live in Queensland, Australia, but who are missionary teachers in "Vanuatu." I'm hoping that someone will have an idea of how to get these supplies to you.

I'm from New Jersey, in the United States, but my son married an Australian woman, and so they are living in Queensland, just south of Brisbane, on the Gold Coast. I'm sorry I didn't read your story earlier because I just got home from visiting them a few weeks ago... I would have loved to meet you.

I'm posting this instead of just sending you a personal message in hopes that someone might think of a way to help. Please stay in touch.

Best of luck to you.

Marsha

StarUK

Hi Marsha, I'm facing the same problem. How to get there? My brother and his family live on the Gold Coast, but we grew up on the Sunshine Coast. But like you, I am going to find a way to do this. We are fortunate.

Past Member
Hi Walayap,

Thank you for sharing your story with us all. I was very moved by it and the serious need for help with support and supplies in PNG for ostomy patients. In the UK, there is an organization called OstomyAid, which distributes unused ostomy supplies to patients in other countries that need them.

I think it would be worth you contacting them here:

http://www.ostomylifestyle.org/content/ostomyaid

Please let me know if you want me to do anything here. I would be happy to contact them for you if you send me a contact email or address. I think you can send me a private message through this website? Otherwise, you can find me on Facebook.

I am a 55-year-old man and had a colostomy 3 years ago due to ulcerative colitis from the age of 28. The medication just didn't work anymore. I'm now waiting for more surgery to remove the rest of my colon. It's been a hard few years, but at least the medical care here is good and no problems with ostomy supplies.

Good luck with your work.
Best wishes,
Tim
walayapo
Hi Nettie,

I'm reading the very helpful information you are giving and at the same time feel for the condition you are in. Although our conditions are different, I feel we have a connection in that we have lost a part of us that made us whole. With today's medical technology, we have been given a second chance in life.

Thank you very much for the information. In 2010, I did visit the QLD Stoma Association. This was a year after my surgery before I even knew of the existence of colostomy pouches.

I went over the Christmas period when everything had been packed away for the holiday season, so they couldn't help me much. In any case, they said what they had was for their citizens, which was their priority. They did give me some long sleeve bags for irrigation.

I told them about the Ostomates Rights and coming from a Commonwealth country, but I guess it was the timing I went there.

They told me they do send any returnables or overstocked supplies through the Lions Rotary Charity Organization here. In this recent trip to Brisbane, I didn't get to visit them.

I appreciate your contribution towards my plea.

Thanks again, Nettie. May God bless you with many more years.

Wantok
walayapo
Hi Tim,

I'm so overwhelmed with the response I'm getting from you and the other ostomates who were touched by my story. Though you are suffering with your condition, you are going out of your way to give me valuable information.

Having gone through the website you gave, they send to the African countries so it's worth a try.

Thank you for assisting in this. You can contact them for me. I truly appreciate you giving me your time.

God bless

Wantok
walayapo

Hi Marsha,

Your story has really touched me. For you to live 50 years after surgery has been something to look forward to as I am at most times depressed. Your long life is an inspiration to me and gives me some hope, as I have three grandchildren to look after. Their mother passed away one year after my surgery. The oldest was 6 years and the youngest was 7 months. They are the reason I wake up each morning and wish I could live another 20 years.

I can't imagine what you went through from your childhood to adulthood, but you must have been a strong-willed person to face all the challenges in life to get to where you are now.

I'm so grateful that you want to send me the ostomy supplies. I am so overwhelmed by your generosity. Would you be able to tell me how many cartons you have and the total weight?

You could also ask your friend the same, and I will know how much weight we are looking at. I will try to look for some sponsors at my end. It may be impossible for us, but our motto at the Papua New Guinea Stoma Association is: ALL THINGS ARE POSSIBLE WITH GOD. I believe in that.

God sees in us what we are trying to do, so I believe there is a way.

God bless you, Marsha.

Wantok

Mrs.A
Hello,
Here are a few links I found on another ostomy site. Hope they can be of some help.

http://www.ostomyland.com/ostomyland/chapter-22-website-links/
walayapo

Hi Mrs A,
Thank you, Mrs A, for the helpful information on website links. I will surely search them all.

Kind regards.
Wantok

walayapo

Hi Staruk,
I'm back again. There's a Wantok Support in England who is willing to help with shipment of any donated medical ostomy supplies. If you are able to get in touch with them, you could find out more info.
Thanks, wantok

StarUK

Great news! Can you give me their contact address, and I will make contact with the stoma nurses and associations here in Sussex?

walayapo

Hi Star,
Admin says not to write email address here so unable to give you their contact. Apologies for the delayed response. Need to get used to this forum. Thanks for your assistance. Tim has been assisting and knows the contact.
Regards
Wantok

walayapo
Hi Marsha,

If you still have the supplies, you can try the postal service. I will pay for the postage. I am unable to send you a personal message as I am using free membership on Meet An Ostomate.

Please send me a message so we can exchange information, etc., and work out a way of getting your surplus supplies to PNG.

POSTAL ADDRESS is

PO BOX 475
PORT MORESBY
PAPUA NEW GUINEA

Kind Regards,

Walayapo
walayapo

Please see my other post on the launching of my association, Papua New Guinea Stoma Association.

https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=5519

ZaliBee

I have a few boxes of unused wafers and bags that are the wrong sort for me. If I want to send them, do they go to that address? I don't want to send it to you and you get charged duty.

Bumba

I have had my ileostomy since I was 12 in 1960! I felt very alone back then too. Your story brought me to tears. I am going to try and find supplies for you. I have a continent ostomy now so I have no pouches, wafers, etc. I will check with the local ostomy society here in San Diego, California. Best of luck to you and your countrymen (women) to raise awareness.

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