I am writing this to remind you about the World Ostomy Day (WOD), which this year takes place Saturday October the 3. WOD takes place every 3. year – and always on the first Saturday in October. WOD has always a slogan, and this year’s slogan is REACHING OUT.
The aim of World Ostomy Day is to improve the rehabilitation of ostomates worldwide by bringing to the attention of the general public and the global community the needs and aspirations of ostomates.
Many of you reading this will probably know me – or at least know about me – as I have been the president of EOA (European Ostomy Association) for five years now. But anyway I can tell you that I am an ostomate myself. I got my ileostomy more than 35 years ago. Normally my ostomy and my self go along pretty well. Sometimes it gives me some problems, but so far the ending has been good!
Many of you reading this have very few problems being an ostomate – at least when it comes the appliances and also economy and discrimination. But I know that there are many places also within EOA were there are many problems like no appliances available, and if there are appliances available, the ostomate has to pay completely or partly. There may be a limited number of appliances for free given by social security. Discrimination will occur somewhere – and of course awareness and openness is lacking many places.
The Charter of Ostomates Rights is a very valuable document. Take a look at that (you will find it elsewhere on this site). The Charter tells very clearly what needs the ostomate has, and it tells what service we want our governments to give us. If you do not get this kind of service you sure have things to work with in your country.
Even if the Charter has been fulfilled in your country, there will often be talks about limitation from the government wanting to save money. A limitation in the appliances situation may give the government a “shot in their own foot” – or more clearly said that the expenses will increase as the working situation for the ostomate can be worsened.
So what will happen on October the 3? Well, mainly it will be up to every country, every local chapter to make as much as possible out of the day. Bare in mind the slogan REACHING OUT and be creative. I know that in some countries there will be huge nationwide arrangements with up to 1000 participants or more. Other places there will be a variety of minor arrangements. Some ostomates will cooperate with nurses (ECET) and doctors. Some will approach politicians, some will be on TV or in radio. Some will have exhibitions and information booths in hospitals, pedestrian areas, shopping malls or other places were they will meet a lot of people. As you will understand – it’s up to you!
Some of the manufacturers of appliances are involved like Coloplast having their Coloplast Merit Award. Hollister will have a photo contest and also Convatec has plans for involving. You can read more about this other places on this internet site. Or you may send me an E-mail and I will be most happy to send you all info including ideas for a successful WOD.
Bottom line is that you decide – but do remember to REACH OUT!!!
Arne Holte, President EOA and regional coordinator for WOD 2009
As we all know the cardinal sin for ostomates is to pack your ostomy supplies and not carry them in you hand luggage. Well, guess what I did on my trip to Chicago – that’s it, I packed my ostomy supplies. But I deliberately made this decision. The flight from Toronto to Chicago is a little over an hour, so I wanted to travel light with just my laptop so I packed my supplies. This is after the many trips I have made abroad and I certainly ought to know better. However, I learned my lesson because all hell broke loose in Chicago with extreme weather conditions.
My flight was due to leave at 12:30 so for an international flight I had to be there two hours early and I was. Having gone through the rigmaroleI previously told you about, I went to the departure area to do some work on my laptop. What I found however was that an announcement was being made that Chicago O’Hare airport had been closed because of extreme thunderstorms and twisters so my flight was delayed. We were asked to sit tight while the weather system made its way out of Chicago, so we all did.We were then scheduled to leave at 2:00 PM which was not bad at all. About 1:30, we began the boarding process and by 2:00, we were all set to leave. As the doors of the aircraft were about to be closed the pilot suddenly came through with the message, “ Everybody off the plane we are not leaving.”
Off we got and we were asked to sit tight until we knew what was happening. There were two further flights in the afternoon that were cancelled. The airport had reopened but priority was being given to landing the long distance flights from Europe, South America and Asia. We were still sitting tight until 6:00PM when we were rescheduled to leave. It was about this time that I began to feel “uncomfortable” and I realized that I probably needed to change my appliance but I didn’t have one.They were all in my suitcase. I figured out that if we left ant 6:00 PM I could manage until I got my luggage in Chicago. Well, we didn’t leave at 6:00PM or 7:00 PM and I now knew I needed to change the appliance. I decided to go and buy tape and tape around the appliance and hope for the best, when the announcement was made that there would be no flights to Chicago that evening. Another bank of thunderstorms had rolled into Chicago and all flights from Toronto were cancelled. We know had to collect our luggage, go through Canadian Customs as if we had left the country because we had been cleared by American customs and we were scheduled to leave on Saturday morning.
I was rescheduled on an early morning flight so made the decision to stay in a hotel close to the airport and not go home. There was no reimbursement for the hotel room regardless of where one came from although special room rates were negotiated.I got to the hotel at about 9:30 PM and the first thing I did was change the appliance which had by this time began to seriously leak. I have to tell you I shook my head at my stupidity. Ihave not had an appliance leak in years and certainly was unprepared for this to happen.
So lesson learned; no matter what the distance carry your supplies -even for short distances, make sure that you have one change with you. I knew that too. This is what comes of not thinking about all eventualities.
What with the experience getting through immigration and then the appliance, Friday 19th was quite the day!!
Seems that I always have a story to tell about travelling and this time, another experience to share with you. I was leaving for Chicago and if your destination is in the USA when leaving Canada you clear US customs before you leave Canada. So I went through to immigration. No problems, nice young man chatted with me and then I proceeded to check in my luggage. Did that and then joined the line to put you hand luggage on the X Ray machine etc.
As I approached the conveyor belt, a young lady came up to me and said, “ Are you Mrs Bracken travelling to Chicago?” I replied that I was and she said, “You have been selected as the passenger on this flight for a random search. This means that we will be conducting a through search of your hand baggage and your person.” So, the people behind me were sent to another conveyor belt while I put my stuff on the belt for XRAY. I was travelling light, only a handbag but off came my jacket, my shoes and my socks. I was given a pair of plastic slippers for my feet. Of course when it came to walking in through the XRAY machine itself, off went the alarm and I just said, I have a replacement hip. It didn’t matter as I was going to have this thorough search. I did read a notice that said in the event of being searched, the passenger could request a private room so I decided I would do that if necessary.
First procedure was that I was wanded down and there was no problem here. Then another female arrived to pat me down. I have never been so thoroughly patted down.
First of all she started with my hair. Ran her hands through my hair and behind my ears.
Completely pressed around my neck and then carefully down my back.
Carefully she patted my arms completely paying attention to the underarm area. Then it was around the front.
She started with each leg; very through including my feet.
Then it was the front. This is when I thought here goes. Let’s see what happens. As she felt the appliance through my pants, she asked me to turn out my pockets. I did so and she patted again still feeling the appliance.
She looked at me and asked, “What am I feeling?”
I explained that I had surgery which removed my bowel and I now wore a bag on my stomach to collect waste material. The conversation went like this:
“What’s waste material?”
“It’s the stuff that you get rid of when you go to the bathroom.”
“Go to the bathroom? What do you get rid of when you go to the bathroom?”
Being polite I said, “Feaces”
What’s faeces?”
So I thought here goes, “It’s a bag of SH..
She broke out laughing and virtually chuckled through the rest of the search which she conducted.
Everything came out of my handbag but while she was doing this she asked me about the surgery and we had quite the conversation about ostomy surgery and why it happens. I had to turn off and on my cell phone. My laptop was swabbed and I had to turn it off and on. Apparently, these random searches are conducted on flights leaving Toronto and going into major US cities. One passenger is selected and it happened to be me.!! I ended up giving her one of my business cards having told her about the IOA. As I left she shook my hand and laughingly said, “Do I have a story to tell my family tonight!” I said, “That makes two of us!”
It’s interesting the opportunities that we have to let people know about ostomy surgery. My advice to you when travelling is, Stay Calm. These people are only doing their job and if you do encounter any difficulties, ask to see the person in charge. I have three more flights before I am home at the end of the month. I wonder what other adventures await!
Greetings from London. Believe it or not it is a bright sunshine this morning as I prepare for going to attend ECET meeting in Portugal starting from 14th to 17th June 2009. It has been miserable weather of rain & cold until now in the UK.
I have been invited as an IOA president to speak on " End of Life - Social & Spiritual Response " & on " Stoma Care Resources " . While I will be there for this meeting I will be meeting with Mrs Jytte Glimm of " Access to Health Care ( AtH ), a trust set up by Coloplast ( they celebrate 50th year ) to help ostomates mainly in developing countries of the world. This is where the funds for project in China ( Iscap & stoma care As well as forming ostomy clubs in various provinces of China ) will come from. This year they have identified China , India, Mexico & Malaysia where they would like to help.
I will meet some body from Coloplast to update him on the current situation of stoma care in Asia & perhaps in South America .
I will then go for a private visit to meet my brother in New Jersey in the USA. While I will be in USA, I will meet people in Hollister facilities in Chicago . I might get a chance to meet some body from Convatec as well if there is time. I would like to discuss the allocations of funds for IOA projects for 2009 & 2010.
It is indeed a very sad to know the passing away of Norika-san.
I have known her for last few years. She was always very gentle & kind person with a lot of dedication towards improving life of ostomates not only in Japan but all over Asia. Her enthusiasm to help ostomates was very 72 exemplary and impressive. Her biggest achievement for ostomates in Japan was to have got the dedicated rest room facilities for ostomates in all public places in Japan. She also helped initially ostomates in Mongolia as an individual person before twinning occurred between the Japan Ostomy Association and the Mongolian Ostomy Association. These actions of hers show how much she worked for the cause of ostomates and succeeded in achieving what is best for ostomates.
I have very fond memories of being with her in many AOA & IOA meetings and the last one was the AOA congress in Tokyo in November 2008.She was very kind and gentle and spoke very good English. I will always remember her last advice to me " Keep up your good work for improving the life of ostomates all over the world and my best wishes are with you. If I can help you in what you are doing please do not hesitate to ask for my help."
With sad personal condolences to Noriko- san's family and her JOA colleagues,
Jorge Vargas Morales, Secretary of Health Dr Jose Salazar Avina, Doug Graham
This NCACOA Regional Conference has proved to be most interesting and has differed from other regional meetings in the area because of the tremendous interest shown by the State and local government. The Governor of the State of Colima, Sr. Silverio Cavazos Ceballos has been most interested in the cause of ostomates and has met with Jorge Morales on a number of occasions as the arrangements were made for the Regional meeting. The Governor also met with President Doug Graham on an earlier planning meeting. The opening day of the meeting coincided with an important national holiday in Colima but the Governor made it clear that in spite of his other duties, he wanted to be with us to declare the NCACOA meeting open. We received a call to say that the Governor would be late but he showed up and made sure that he met with all of us including ostomates. He shook everyone’s hand and made sure that all felt welcome.
We had an “off the cuff” visit to the new Cancer Institute as the result of a meeting that was held between Doug Graham and the Secretary for Health. Doug talked about our future plans for Mexico and the Region and he was immediately asked to bring his committee to the new Cancer Institute currently in the process of being built. Secretary for Health Dr. Jose Salazar Avina personally conducted the tour of the facility and was more than generous in answering questions. A room in the Cancer Institute has been allocated for the Ostomy Association of Colima.
The whole of the educational meeting was held at the modern facility of Colima University and it was most impressive to see a number of nurses present as well as physicians and ostomates. The Regional Meeting was organized by Jorge Vargas Morales who presented the Opening Remarks. The programme included the following:
Anatomy and Physiology presented by Dr. Jose Alejardro Herrera Lopez
The Role of the Enterostomal Therapist in Ostomy Surgery presented by Dianne Garde ET
Techniques for Reconnection presented by Dr Carlos Aaron Bernal Martinez
Diet and Nutrition for Ostomates presented by Carmen Flores Uribe, Dietician.
Due to changes in the timing of the programme not all of the intended programmes were covered.. However, there weremany learning opportunities for both members of the medical community and ostomates alike. The interaction between the government and the Ostomy Association of Colima is most encouraging and augers well for future progress for ostomates in Colima State.
Ofelia Diego Puente, President Ostomy Association of Colima ; Jorge Vargas Morales, Member at Large NCACOA: The Governor of the State of Colima, Sr. Silverio Cavazos Ceballos; Di Bracken, Past President IOA; Astrid Graham, President FOW Canada
“Today, Thursday February 5th, 2009 at 1:28 PM, I hereby declare open the Conference of the North and Central American and the Caribbean Ostomy Association of the International Ostomy Association .
I am sure that the presentations and discussions will help improve the lifestyles of patients.”
the conference was officially opened by the Governor of the State of Colima, Sr. Silverio Cavazos Ceballos.
The Governor in his message to those assembled thanked Jorge Vargas Morales and his Ofelia and all ostomates in Colima for the work being done to help promote the lives of ostomates in the state of Colima.Governor Cavazos Ceballos stressed the importance of working with other ostomy associations outside of Colima and went on to thank all the foreign dignitaries present emphasizingthat their presence is important for the future of ostomates in Colima. Working with countries like Canada, Puerto Rico and the USA will make us all work together in solidarity. The Governor wanted all attendees to know that in Colima, the government will always join in the work that is being done internationally
The NCACOA conference was held at the University of Colima and was attended by members of the medical
Kristen Knipp, UOAA and Doug Graham, President NCACOA
profession including a number of nurses in training. Governor Sr. Silverio Cabavos Ceballos.recognized the importance of their presence expressing his thanks to them for being present to learn more about ostomy sugery and the lives of those living with a stoma.
This conference has had a tremendous impact on ostomates in the area and received great support from Administrative and Medical communities of the university as well as the official government of Colima. A portion of the conference was televised and carried on the local news channel; as well a write up on the front page ofthe newspaper Ecos De La Costa together with a picture of Doug Graham, president of NCACOA with the Governor.I will give you some further details re the discussions presented in my next blog
On the occasion of the 6th Asian Ostomy Association held in Tokyo,
Japan from November 13 - 16 2008, I was privileged to extend the
proposal of establishing 20/40 Focus Group Desks in every member ostomy
association in the Asian Region. I believe that the key word here for
this proposal is decentralization giving opportunity for independent
association to create awareness from their own cultural perspective. It
will invite too more members in a higher and faster rate.
As such, the line of work here is that I established a working
structure that can be passed on to the ostomy associations of the Asian
countries for them to model, adopt and and even improve. It is
basically composed of three branches namely a. the creation of an
awareness campaign, b. the introduction of support groups, c. the
invitation of young ostomate volunteers.
I have introduced this set-up here in the Philippines and I feel
that it is no easy task. We have to consistently and patiently drum up
awareness on ostomy issues because I believe that one way or another,
there will be people who will be interested to share in the advocacy.
During the Youth Forum in Japan, I was able to talk to young
Japanese ostomates. One of them shared with me personally that young
people are hesitant to expose and make themselves known so that
participation in ostomy groups might be a problem. Hence one of the
features proposed for the 20/40 Focus Group Desk is to enable
communication by way of the information high-way.
The task ahead involves a lot of work and patience. We look forward
to a new year of commitment for the good of young adult ostomates.
I will be away from 14th evening to 19th January to participate in a surgical camp that has been organised in a remote village in a state of Rajasthan in North West India. We are a team of 12 surgeons & 4 anesthetists who will be operating for 16-18 hours a day for three days so that poor patients also get modern surgical treatment in their own area. We may operate on approximately 90 patients if every thing goes well. I will share further information on my return home.
