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Lone ostomate creating awareness in my country

Posted by walayapo, on Fri Apr 26, 2013 1:47 am
Hiello Wantoks,

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.

Wantok (Friend)
Reply by three, on Fri Apr 26, 2013 1:55 am
Hi walayapo,

Thanks for sharing your amazing and inspiring story — you are helping so many!
Reply by walayapo, on Fri Apr 26, 2013 2:09 am
Thank you three. You're my first wantok. Thank you for the encouragement.
Reply by StarUK, on Fri Apr 26, 2013 11:37 am
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 to much for granted.

Star
Reply by walayapo, on Sun Apr 28, 2013 7:33 am
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 reffered me to SALTS HEALTHCARE LTD in England so that's how I got my pouches. I am so thakful to them.

I am in Brisbane now so have this excess to internet so 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 follwing the link below:

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



Kind Regards,

Walayapo
Reply by Beaner, on Wed May 01, 2013 8:56 pm
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
Reply by walayapo, on Thu May 02, 2013 12:58 am
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 come across to 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
Reply by Past Member, on Thu May 02, 2013 7:44 pm
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 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
Reply by Immarsh, on Thu May 02, 2013 10:40 pm
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 and important need.  

I have a lot of unused ostomy supplies, and have a friend in another part of the country who has cartons of un used 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 Women, 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
Reply by StarUK, on Fri May 03, 2013 4:58 am
Hi marsha i'm facing the same problem how to get it 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
Reply by Past Member, on Fri May 03, 2013 10:08 pm
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 organisation 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 Face book

I am 55 yrs old man, and had a colostomy 3 years ago, due to ulcerative colitis from the age of 28. The medication just didn't work any more. 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
Reply by walayapo, on Sun May 05, 2013 6:03 am
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 exsistence 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 retunables 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
Reply by walayapo, on Sun May 05, 2013 7:15 am
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 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 truely appreciate you giving me your time.

God bless

Wantok
Reply by walayapo, on Sun May 05, 2013 8:33 am
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 grand children to look after. Their mother passed away one year after my surgery. The oldest was 6 years and youngest was 7months.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 in your childhood to adulthood but you must have been a strongwilled person to face all the challenges in life to get to where you are now.

I'm so grateful in you wanting 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 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
Reply by Mrs.A, on Mon May 06, 2013 10:43 pm
Hello,
Here are a few links I found on another ostomy site. Hope the can be of some help.


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