Towards an Ethiopian Ostomy Association
The visit of Arne Holte and Giuseppe De Salvo to Addis Ababa in September 2011

From the 22rd to the 24th of last September, Arne Holte, past EOA president and I, Giuseppe De Salvo, vice president EOA, went to Addis Ababa to help to start an Ethiopian Ostomy Association.
Mr. Aberra W, an Ethiopian ostomate, is already the focal point for the ostomy patients operated in the Black Lion Hospital, the principal hospital of Addis Ababa. He arranged three meetings for us with the doctors of the Black Lion Hospital, with a group of ostomates and their relatives, and with other doctors working in two private hospitals of Addis. We also went to a pharmacy to see the ostomy appliances they could offer – which was like nothing – and too expensive.

In these three days spent in Addis Ababa, we realized that the actual situation of the ostomy people is terrible. They do not receive any appliance supply by the state or the region. If appliances can be bought (not likely) they are dramatically expensive for the average Ethiopian income. In fact the Ethiopian ostomates purchase plastic bags without adhesive and use scotch tape to attach them to their abdomen. Even if these bags are produced in India, they are in any case expensive for the Ethiopian families, and therefore the ostomy people empty the bags and then they wash them, before to wear the same bag again.

In this very hard situation, Mr. Aberra decided to help the other ostomates and to establish an association to reach easier prostheses from foreign charities. For this reason he contacted first Di Bracken who became ill and asked Arne to take over this mission. Arne developed this relationship, and we arrived to this visit of last September.

Meeting with surgeons of the Black Lion Hospital

Our first appointment in Addis Ababa was with a group of surgeons at the Black Lion Hospital.

They explained that the hospital does not have any appliances at all. It means that the relatives of the ostomy patients must buy bags outside Ethiopia. Anyway, they promised to cooperate with Mr. Aberra to establish and to develop the Ethiopian Ostomy Association.

Giuseppe illustrated the importance of a stoma care cabinet which allows colostomates to reduce very much the need of bags thanks to a good rehabilitation which includes the practice of the irrigation. A course on stoma care should be followed by a doctor (perhaps in the Lions Club course taken by professor Carlo Pezcoller in Italy).

One surgeon of the meeting, doctor Daniel Zemenfes, stated to be very interested to attend the Lions' Club course, and then to work for the opening of an ambulatory for ostomy patients in his hospital.

After this meeting we met the head master (CEO) of the Black Lion Hospital. She is very interested in the establishment of the ostomy association, and she will give all the support that she and the Black Lion Hospital can. 

Just to have an idea of the patient’s conditions, we have to know that in the principal public hospital of Addis Ababa and of the whole Ethiopia, there are three classes for patients:

1. for paying patients who stay in single rooms;
2. for paying patients who stay in double rooms;
3. for not paying patients (with documented incapability to pay) who stay in 25-30 beds rooms.  
   

Meeting with ostomates and relatives

Mr. Aberra called five ostomates for this meeting. Two ostomy ladies and the relatives of three other ostomates came to the meeting with him and us. Practically there were six ostomy Ethiopian people, personally or through relatives, and with the participation of a nurse of the

surgery.

Before the beginning of our friendly gathering, Giuseppe noticed that the two ostomy ladies had sad eyes, while the relatives of the other ostomates, a daughter, a son and a brother, had optimistic expressions. The relatives seemed aware to participate to a meeting which could be helpful for their mothers and brother with colostomy. The two colostomates were not able to arise over their feeling of overwhelming difficulties in their present and future living.

Mr. Aberra introduced all the presents to each other and explained also the practice of the irrigation with its benefits. After that Giuseppe spoke about the importance of an ostomy association and of the goals that it allows to reach. Arne confirmed the availability of the Black Lion Hospital doctors and of the general manager to help the birth and the future life of the ostomy association. Arne spoke also of the importance of the good quality of life which is directly linked to the good quality of bags and plates.

After this presentation, Giuseppe asked the opinion of the ostomates and of relatives on the arguments raised by Mr. Aberra, Arne and Giuseppe.

The nurse told that she has to support both the ostomates and their relatives, but Giuseppe insisted to know the thought of the two ostomates and of the relatives in the meeting.

The first miracle happened: the first ostomate, Mrs. Tenagne, a lady of about 40 years said that she will join the association and help it. Arne proposed that the nurse Lakew (who is brother of a colostomate) changed the bag that Mrs. Tenagne worn with a new good one, and that he could take some pictures during this operation.

Then the daughter of a colostomate 83 years old described the courage of her mother who feels to live well. The second ostomate, Mrs. Eleni, seemed very unhappy because of her complications after the ostomy operation. Now she is under radiation, bleeding and has a lot of pains. A young boy spoke of her mother who was operated few months ago and who is doubt on the continuation of her job. She worked in a library and she is afraid for smells and noises.

But all of the presents consider the association very important because they can exchange experiences. This gathering was the first time that they knew other ostomates. Even Mr. Aberra, who called the meeting, had never seen some ostomates before, because he had only spoken with them by phone.

And overall, at the end of the meeting the ostomates began to speak each other and exchanged their addresses and telephone numbers to continue their relationship.

Giuseppe looked at the eyes of Mrs. Tenagne again, and they were no more so greatly sad, as earlier. The second lady tried to smile, but the expression of her eyes remained still unhappy. It is not easy to be optimistic when we do not see improvements in our suffering condition.

Arne had brought a great number of appliances (samples and so on) which he handed over to Aberra to distribute them.

The private hospitals

In the afternoon we went to the Fistula Hospital. It is a private hospital which is like a well cared oasis in the great Addis Ababa where it is rare to find so well kept buildings and gardens.
The Fistula Hospital is just for women with fistulas and other damages in urine leads after giving birth. These women during the childbirth did not receive a good assistance and got serious damages. The hospital is completely private and it is fully supported by donations from many foreign countries.

The hospitalized women are all urostomates and do not pay anything; they are completely supplied of good quality bags, and they are forced to manage themselves and to learn a new work for having their own working place. Very often they are abandoned by their husbands and divorced.

We spoke with professor Williams, the director of the Fistulas Hospital, and he found very interesting and important the proposal of a new ostomy association. He will cooperate and give his support with advices and relationships.

Saturday we went with Aberra and Lakew, driver and brother of an ostomate, to the Korean Hospital. Here we had a meeting with a Norwegian doctor, Magne Kiplesund. He told us that they did very few ileo ostomies a year (1 -2). They did maybe about 15 colostomies a year. They could do a lot more, but they had to tell the patients that there were no appliances available from the hospital or the government. Their only possibility was to get appliances from abroad from relatives or friends.
Facing this option most of them went home to die!

Also dr Kiplesund was enthusiastic about having an association for ostomates in Ethiopia, and he made it clear that he would strongly cooperate on all levels with such an organization.

Summary and conclusions:

1. Ethiopia has 83mill inhabitants. 50% Coptic Christians, 50 % Muslims. The number of ostomates are unknown. Average living age is 46 years. Most people do not know their exact age - no written info has been made – at least not in the countryside.
   
   
2. No social system paying for ostomy appliances. Some may get appliances from friends or relatives abroad. Mr Aberra gets his appliances from Friends of Ostomates Worldwide (FOW) in USA.
   
   
3. Mr Aberra has started the work on establish an association for ostomates in the country – probably a long way to go.
   Mr Aberra is very enthusiastic, educated i USA where he worked for six years. He has internet – and mobile phone (if anyone will succeed – it’s him!)
   
   
4. Any association in Ethiopia needs a legal aprovement from the authorities. That seems to be rather easy – and Aberra has started to work on that (may be done via internet). We told them that EtOA (Ethiopian Ostomy Association – just a nickname until further) will be accepted by EOA (in due time).
   
   
5. All doctors we met applauded the possibility of having an organization for ostomates in Ethiopia. Also the CEO of the Black Lion Hospitals said she would give her support to such an association.
   
   
6. Doctors at the hospital told us that they would arrange for a room at the hospital where ostomates could meet to talk and to exchange experience.
   
   
7. The patients we met looked forward to have an association for ostomates, and they were willing to join it and (at least for one) willing to be an officer.
   
   
8. It will be quite necessary to supply key persons with appliances from abroad for some time enabling
   them to do a good job for the association.

We believe that EOA should go on with the commitment in Ethiopia. Arne with his net of contacts and great international experience is now without any position within EOA.
He is willing to take on this responsibility on behalf of EOA.
He will urge the Norwegian Ostomy Association the start a twinning arrangement with Ethiopia.
He and his wife have started to send small portions with appliances to the two women who were present at the Black Lion Hospital meeting.
This commitment has already been approved by Arne’s local ostomy club in Norway which will start collecting samples and “out of date” appliances in order to send them to Ethiopia – in small portions.

15 October 2011

Guiseppe de Salvo and Arne Holte