[see image gallery at the end]
EOA project I
This project that we are doing by bringing together in workshops in Lusaka and Livingstone ostomates, doctors, nurses and other health care workers and members of the administrative side, is being run for the second time. The first time was in Zimbabwe in 2019. We are trying to have people talk together, compare their experiences, and try to find solutions for the problems that arise from the needs of ostomates for appliances and health care services.
EOA project II
This work is paid for by the Icelandic Foreign Ministry for the most part. The ministry is handing out grants for work in low income countries for all sorts of work for the benefit of those that are having hard times. Amongst those receiving money for programs like this is The Red Cross in Iceland and many similar charity organizations.
Leading the project from EOA: Jon Thorkelsson, President of EOA, and Marie Steen, board member of EOA.
Hosting the event: Benjamin Lungu, Miriam Lungu and Kilesia Lungu, board members from Stomacare Zambia.
Joining the program: Lizzie and Linda Moyo from ILCO Zim Trust, Faizel Jacobs from SASS, South Africa, and Chabo Lelaka from Botswana.
Workshop instructors: Birna Björnsdóttir, stoma therapist from Iceland and Ismira Serdarevic, stoma nurse from Sweden.
Participants: nurses, pharmacists and doctors from hospitals in Lusaka and Livingstone.
Visit to Stomacare Zambia office – Lusaka
The first activity for the EOA team in Lusaka was to pay a visit to the Stomacare office. Short introductions and sharing of knowledge. Stoma nurse from Sweden, Ismira Serdarevic, handed over two tablets with instruction movies on how to take care of a stoma. One for Stomacare Zambia and one for ILCO Zim Trust. Sponsored by Coloplast.
Presentation of Benjamin Lungu, operational manager of Stomacare Zambia.
About the organization
Stomacare Zambia is a nonprofit NGO registered in Zambia. The main focus of the organization is to provide free ostomy bags, information and accessories to the people living with ostomy in Zambia. Supplementing the government’s efforts to help ostomates to live a reasonable normal life.
Stomacare Zambia works through Ministry of Health to provide ostomy services to all the ten provincial health facilities where surgeries are done.
Stomacare has started building the first national data base for people living with ostomy. So far more than 400 ostomy patients are registered, the numbers are growing on a weekly basis. Stomacare Zambia initially works with the UTH, Levy Mwanawasa and the Cancer hospital in Lusaka.
Challenges for ostomates in Zambia
- Lack of ostomy supplies
- Lack of information
- Expensive ostomy bags (costs between USD 1.2 and USD 15)
- Stigma on ostomy and ostomates
Challenges for the organization
- Statistics. Lack of information on the numbers of people living with ostomy in Zambia. No information on how many. None of the two major health facilities in Lusaka the University Teaching Hospital (UTH) and Levy Mwanawasa hospital keep a record of the ostomy patients. The UTH estimates that at least eleven ostomy surgeries are performed every month in the hospital. At Levy Mwanawasa the corresponding number is eight per month, but it is not consistent for every month.
- Lack of trained medical staff. Government support for people with ostomy is currently not visible. So far only one activity, training of medical staff, 30 people, has been done this year, with support from Lions for Stomacare, Italy.
- Lack of bags. None of the two hospitals (UTH and Levy Mwanawasa) stock ostomy bags in their pharmacies. Even in the commercial sector there is a limited variety of bags in terms of size and quality. The indication is that the prevalence of ostomy is rising, particularly because of the increasing number cancer cases. Not having ostomy bags makes the patients come up with their own bags made from pieces of clothes and small plastic bags. One patient just wrapped plastic around her waist.
- Lack of office space. The organization lacks office space both for administration work and for storage. Today, one of the board members private home is used for storage of ostomy supplies.
- Logistics. Zambia has a total number if 109 health facilities but at the moment Stomacare Zambia concentrate on the capital due to logistic challenges. Reaching the rural areas is the major challenge.
Aim for the future
- When funds are available, reach all the hospitals around the country.
- Organize training for stoma nurses and care givers in all hospitals around the country.
- Reduce stigma by reaching out to communities through media and exhibitions.
ILCO Zim Trust
Presentation by Linda Moyo from ILCO Zim Trust
About the organization
It is an organization founded in 2007 by the Moyo family. The main objective is to advocate for the needs and interest of all ostomates in Zimbabwe. The idea came up when the family experienced a gap in the health care system for care of ostomates. They experienced a number of difficulties and challenges during the care of then 12-year-old Lizzie Moyo, who underwent surgery and had an ileostomy. They realized other ostomates must face the same or similar issues and started to mobilize families in Zimbabwe for the needs and support of ostomates.
ILCO Zim Trust has become a strong player in assisting ostomates in Zimbabwe. It has assisted more than 2 000 ostomates in the country. The organization works closely together with the Ministry of Health and has permission to work in all the Hospitals. ILCO Zim Trust is a member of EOA.
- Has an ongoing training programs with policy makers, medical staff who work directly with ostomates, and caregivers.
- Community meeting to raise awareness of ostomy to reduce stigma.
- Advocating for the rights of ostomates
ILCO Zim works directly with ostomates by supporting them through:
- Monthly meetings
- Distribution of ostomy appliances
- Stoma care trainings
- Outreach programs
- Hospital visits pre- and post-operation
- Home visits
Challenges faced by ostomates in Zimbabwe
- Lack of information
- Unavailability of ostomy appliances in local markets, hospitals and pharmacies
- Expensive ostomy appliances (if available locally)
- Stigma and discrimination
- Poor quality of life
- Hard to adopt in the society etc.
- Taboo in the African culture, believes in witchcraft
The South African Society of Ostomates – SASS
Presentation by Faizel Jacobs, chairperson, SASS
About the organization
The organization was founded 2020 by Faizel Jacobs and two other ostomates. SASS is a non-profit organization, formed to facilitate a holistic approach to ostomy patient care by bridging the gap between the private and public sectors whilst advocating for the rights of ostomates throughout South Africa. The organization aims to advocate and align the standard of stoma care and services across the country. Thereby aligning to the global standards set out by the International Ostomy Association (IOA). Today there are 200 members of the organization.
Set out to achieve
Get educated. Medically reviewed surgery-specific information. Making sure the ostomate have access to the best possible care. Ostomy pouch management tips, diet, nutrition, skincare, sexuality, travel tips and more.
Feel supported. Support to the ostomates and their family whilst the ostomate transition into their new normal. They will have access to a local peer support groups, where they can get answers to questions, or connect with our Facebook community.
Survey made by SASS
For how long have you had your stoma?
- years = 39 percent
- 1-2 years = 25 percent
- 3-4 years = 6 percent
- 5 years or more = 31 percent
When last has a stoma nurse examined your stoma or peristomal skin?
- 0-6 months = 40 percent
- 6-12 months = 0 percent
- 1-2 years = 13 percent
- Not since being discharged = 47 percent
Are you receiving sufficient product to support your lifestyle?
- Yes = 35 percent
- No = 65 percent
Do you feel that you still need support?
- Yes = 80 percent
- No = 20 percent
World Health Organization
Everybody should care about toilets because access to sanitation is recognized by the United Nations as a human right that entitles everyone to have physical and affordable access to sanitation, in all spheres of life, that is safe, hygienic, secure, and socially and culturally acceptable, and that provides privacy and ensures dignity.
Is what ostomates are being exposed to:
- Lack of understanding/ lack of education in the supply chain as to what life with a stoma is about?
- Is it medical negligence?
- Is it medical malpractice?
- Is it a human rights violation?
Discussion among the participants. No conclusion, but maybe a mixture of all of them?
Presentation by Birna Björnsdóttir, stoma therapist, Iceland.
Together with the Swedish stoma nurse Ismira Serdarevic, Birna Björnsdóttir went over the basics in ostomy care. In Zambia all stomas are often referred to as colostomies.
Different types of stoma
- Colon is taken out through a hole in the belly
- Stool is loose at first but becomes firm over time
- First two days post op always use a drainable and transparent stoma bag – Regularly check the color and temperature of the stoma
- When stool becomes firm use a closed bag and change bag when necessary
- Change the stoma plate when patient is ready to be educated
- Change the plate 1-2 times per week or more often if necessary
- Change the bag when necessary
- The short bowel is taken out through a hole in the belly
- The stool is always liquid
- First two days post op always use a drainable and transparent stoma bag – Regularly check the color and temperature of the stoma
- Always use a drainable stoma pouch
- Change the bag when necessary
- Change the stoma plate 2-3 times per week or when necessary
- The ureters are connected to a piece of short bowel which is taken out through a hole in the belly
- Transparent bag connected to a bigger bag the first 2 days post op always check the color an temperature of the stoma regularly
- Nurses check the tubes from the stoma once per shift and flush them if neccessary
- Change the stoma plate 2 day post op
- Connect a night bag in the evening and disconnect in the morning. Flush the night bag
All types of stoma
- Practice the patient as much as possible as soon as possible to attend the stoma
- Practice the patient to empty the bag
- Practice to change the bag
- Practice to change the plate
The role of the stoma nurse
- Teach the patient to attend the stoma during the weekdays
- Help to find the best suitable products for the stoma
- Ordering stoma products for the patient
- Apply for stoma products via social security system
- Book an appointment with the stoma nurse
- Consult for in and out patients
- Teach health care staff to attend stoma patients
- Telemedicine consult for far distance in and out patients
- Discussing the psychological effects of having a stoma
Health care staff
- Teamwork – paramedics/nurses/doctors
- Start practice the stoma care as soon as the patient is able to
- Condition of peristomal skin when changing the stoma plate
- Different body image – teaching/practice. Document how the patient is coping having a stoma and the progress of learning
- Function of the gastro intestinal tract
Ostomy supplies workshop
Birna Björnsdóttir, stoma therapist and Ismira Serdarevic, stoma nurse, demonstrated the different kind of bags the nurses and doctors can come a cross. The participants in the workshops in Lusaka and Livingstone got to try to put on and off bags from a dummy. They learnt the difference from ileostomy bags, colostomy bags and urostomy bags. Also how to measure a stoma and how to use powder and spray.
Visit to the University Teaching Hospital
The program included a visit to the University Teaching Hospital (UTH) in Lusaka. The EOA team and some of the participants from the workshop visited three departments of the hospital.
The ICU – Intensive Care unite
At the intensive care unite the team and the participants met a 52-year-old patient with severe skin damage. When released from prison after 15 years he had some mental issues and ingested some stones. That made him have first a colostomy and then an ileostomy. The ICU nurses didn’t have tillgång till adequate stoma supplies. The bag used was the wrong kind with an opening too big, resulting in leakage and severe skin damage. Stoma therapist Birna Björnsdóttir from Iceland demonstrated how to care for the skin and the stoma. She put barrier cream and powder to make the plate stick to the skin better. The group of patients from the workshop could attend and learn how to attach the bag correctly. We followed up the day after and the bag still sticks on the stomach.
G21 surgical ward
A man with colostomy. One of the participants from the workshop managed to change the ostomy bag of the patient with instructions from stoma therapist Birna Björnsdóttir.
The Pediatric Department
A two-year-old boy born with a deformation of the rectum. The young patient had an ostomy, and the staff did not have any ostomy supplies, only a piece of fabric and a diaper was covering the stoma. One of the participants from the workshop, a surgeon, applied the stoma bag, with some instructions from the stoma therapist Birna Björnsdóttir. Due to lack of bags suited for children they had to use a bag for adults with some adjustments made. Stomacare Zambia left some bags for the boy. They will soon reverse the stoma.
Group discussions – What are your expectations?
Five mixed groups with nurses, surgeons, EOA members, stoma therapists discussed the expectations of the workshop.
- To know the different types of ostomies, there are lots of differences between ileostomy and colostomy. We should know the difference.
- How to take care of an ostomy patient
- How to take care of a stoma, change bags and plates
- How to secure the bag to avoid leakage
- The use of chemicals to remove the bag
- Understand the complications and how to handle them: redness, blisters, rashes.
- Want to know how to educate ostomates, pre operation and post operation. What do they need to know before they go home?
- How to inform a person living with stoma.
- Learn about challenges for ostomates.
- Lack of knowledge, all different stomas are referred to as colostomies, learn the difference.
- Patients with stoma should have discount on supplies
- Involve the dietitians, talk about nutrition, what they can eat, when they can’t eat and so on
- Stigma drains the patients
- Invitation of ostomates to talk to patients that will have an ostomy
- Locate patients who have stoma, counsel them, so they have better understanding
- Marking, where the stoma shall be, so the patient is not affected after, clothes, waistline. “Everyone cannot afford a new wardrobe”.
- Follow up with patients
- Support groups
- Lobby for a vehicle for Stomacare Zambia, so they can reach the rural areas
- Can the hospitals provide bags? Maybe.
- Hot line. Patients should have access to health care staff, they should be able to call.
- When we have more knowledge about the best bags, the best bag for each patient can be recommended.
- Cooperation between health care providers and public health nurses
- Is it sustainable that the international organization is giving out bags? Does everyone receive them?
- Is it sustainable with the local organization, can it provide for everyone?
- Surgeons, what challenge do you have?
Ministry of Health: Alex Makupe, Lusaka
Interview with Alex Makupe, general surgeon, director of Clinical care and diagnostic services at the Ministry of Health, Zambia
Is there any cooperation between authorities in the countries in southern Africa? Zimbabwe, Zambia, South Africa about ostomy supplies?
- No. Each country tackles that issue independently. In Zambia we got an agency that does the proclaiming, storage and distribution of all medical and surgical supplies including stoma bags.
Isn’t it necessary working together on this matter?
- Always. For surgeons, we got regional grouping called COSECSA, a college of surgeons for East, Central and Southern Africa, and it would be good for that grouping to share experience, as far as ostomy, consumables etc.
Where do you get stoma supplies from?
- Like any other medical surgical commodity, we do a lot of importing on drugs and medical surgical supplies, 95 percent of what we use in Zambia we import. Different companies import and then they sell to government through Zamsa, the agency, we do not manufacture ostomy bags.
Would that be an option, manufacture products here?
- That would be the best. There is now a policy, that is starting under government, to ensure that we promote local production, local manufacturing of drugs and surgical supplies, including ostomy bags. The Ministry of Health is sharing that through xxx to bring together private companies to promote local manufacturing of drugs and surgical supplies.
How far away is that?
- It’s just in the initial phase. We are working with the European Union. Basically it’s this year that the ground work is starting trying to promote local manufacturing.
The medical staff (according to them and to patients) is not educated well enough when it comes to stoma care, what will be made to make a change?
- We need to be much more proactive; we need to ensure that the people that got the knowledge after getting to xxx all our nurses, all our doctors are well informed and taught on how to take care of the stoma. Indeed, it’s a big gap. This is why I said that as we are improving the numbers of human resources for health we need to also increase and need support in the area of mentorship so we can train many of our people on how to look after a stoma and how to support patients with stoma.
What will that mentorship be like?
- Bedside practical teaching. Strengthening counseling services in our facilities.
Patients are not getting enough information, why is that?
- Because the staff has not got the knowledge.
Basic education for nurses and surgeons and health care staff involved in stoma care, are they taught anything about ostomy in basic training?
- Yes. It’s part of the syllabus, medical training, and training for nurses. But what’s missing is the practicality. Teaching about ostomy care is one thing. Work on the ground; how one can apply a bag, how one can clean a stoma, is another thing.
Who is responsible for making a change in the education?
- It’s the Ministry of Health through the nursing schools, we got both public and private nursing schools, but their curriculum stipulates what should be there on far as stoma training is concerned.
Are all syllabuses the same?
- Yes. It’s the same exams, it’s uniform.
From Zimbabwe we heard that there was a confusion between stoma and HIV, is it the same in Zambia, because of lack of knowledge?
- No. As I said, I am a surgeon, and I never came across that myth.
What other challenges are there for ostomy care?
- Availability of ostomy bags, lack of information to the patient, how to look after the stoma, the need for us to understand their needs and the complications. Human resources.
How do you support the ostomy organization in Zambia?
- It is basically about policy direction, it means we give the practical component policy, and to get them in to the hospital to meet our people. Sometimes they can’t get in to the hospital without permission of the Ministry. We support them in that area.
Request to Ministry of Health
Nurse Victoria Msoni Ndhlovu from UTH speaking to the Ministry of Health:
- On behalf of my collogues, doctors and nurses, we are grateful to the ostomy organization for this opportunity to give us information and knowledge that we didn’t have. It’s my pleasure to speak of everyone. The knowledge and the information we acquired during this training is very useful. And we are promising that we are going to implement what we have been taught today in order to maintain the dignity of the ostomates.
- Therefore, in Zambia, Dr Lupasha, you are being part of the higher decision-making team, we are asking you to at least go and advocate for us, we like to have a special clinic for ostomates and also we are asking if a special training can be granted and provided for nurses and doctors, especially for surgeons. We lack information that we need to provide to our ostomy patients They are special patients just like the HIV patients, just like any other patients ostomy patients are special patients. And therefore sir, please advocate for these very special patients.
Ministry of Health: John Kachimba, Livingstone
Interview with John Kachimba, seniormedical superintendent and consultant urologist
Is there any cooperation between authorities in the countries in southern Africa? Zimbabwe, Zambia, South Africa, Botswana? Etc.
- Yes, there is. The cooperation is there, it’s well established at the highest level. We have the Health Ministry gathering for SADEC, we have common problem. We handle major public health issues on a country level. We manage the malaria issue, it’s pointless to wipe out malaria in Zambia, they don’t follow borders.
But about ostomy?
- No, of course, we don’t have for ostomy. The obvious reason is that ostomates are not featuring in the health planning of many countries, and it’s not considered a transnational health issue. Everything else that we cooperate on is essentially that. We cooperated with covid. Stoma care is not a transnational one, so we don’t do that. Can we cooperate? Absolutely. Because we set common standards. Both in health education aswell as in health standards across the borders as countries of East, Central and Southern Africa. We have common colleges of surgery, colleges of nursing. If we were to set a standard we could set a standard that will be out heard right though East Africa, Rwanda, Burindi, all the way down to Namibia. That is easy. The reason it hasn’t extended to stoma care is that we have not yet set the standard for stoma care.
What’s needed to do that?
- What’s needed is advocacy. I keep saying this; surgery has been way slow, in stating it’s case. And even as it has done it now we are still struggling to set the minimum standard for surgical care. We are trying to set the standards for operative care, pre-operative care, we are setting the standards for surgical training, nursing training, we are setting the standards for trauma care. Sugery has for too long been isolated in operating rooms, in surgical wards. We are trying to look at surgery more as a public health intervention. Like government dictates for road safety, a national standard. If we choose to set a standard for stoma care it can be done on a national level.
We do not have the numbers for ostomates or ostomy surgeries. What does it take to get the statistics from that?
- No, we don’t. As surgeons, we haven’t advocated enough. We have a health information system that records every procedure that is done in the country. It is not the most sensitive in terms of going right down to the actual procedure, it goes by system. If we look at cardiovascular it will tell us the number of heart procedures done, in my opinion it has not been sensitive enough to pick out when a stoma is made. The stoma is always taken as a part of a greater procedure, if I had radical surgery for coloncancer, it will pick the coloncancer, but not necessary state that a stoma was done. That is something we need to be better at picking out in our data. But all it takes is surgeons to push to Ministry of Health for it to be there. The surgeons write it down, you tell the medical staff that put it in the hospital information system how to put it in, then you can simply key in that particular element and you will be able to know the actual numbers. It is very easy to pick, but it will require advocacy. If Stomacare Zambia is working in isolation it won’t work, but if we can enter at a senior level through the PS, press upon him the importance, that will be good.
Lack of stoma supplies, would it be an option to have stoma production in Zambia? Or what is the solution to make every patient have the right bag?
- The first thing is to have the data. Have the products specification, have the product standards and make a request. The request must come from the various hospitals. And the hospital has a chain the way it moves straight up to Ministry of Health. We buy a lot of things, and an analogy I heard that I like, If you lose a limb and look at the rehabilitation services, we have a database for them and we have imported prostheses for them. We can do the same with stoma.
It’s not actually a financial issue?
- No. We need to ask for them (ostomy supplies).
How do you support the ostomy organization?
- I can only speak for the southern province. It is one of many organizations that are crying out for support. They have to identify the key stakeholders and for the Stomacare Zambia, they need to go through the directorate that looks out for the clinical care, they have a coordination unit that looks at surgery, and stoma care falls under surgery. I am certain that it has never been brought to his attention that we need to look at it at a national scale. It has never been done. That will be the easiest way to go through. He plans for operating rooms, he plans in terms of infrastructure, equipment and supplies, he plans in terms of human resources. He will know for the next decades or so where we are heading. I never seem stoma raised in these reports, we need to present ourselves a lot better, fighting for attention. We have a huge cry for autism and for pediatric heart surgery so that is what the Ministry is looking at. If Stomacare wants to get itself heard it needs to go through the right channel, and it’s very easy to do. Anti-cancer drugs and heart surgery cost us so much, these appliances (stoma bags) are not expensive in these terms.
Ostomy education is that mandatory?
- It’s in the curriculum, yes. But it’s not enough far from it. We need to revisit the curriculum. The ostomy care is less than ideal, and that it’s because that is what we are teaching people. We need to change the curriculum and the approach to managing stoma. It needs to completely change. We do not plan the care well for stoma patient. Both the pre-operative, the operative and the post-operative care is not well planned. The patients are not part of the decision.
You mentioned mental health in your speech?
- Yes. We need to bring in other professions, like mental health for example. You can have someone tilting in to depression because they weren’t prepared correctly and they are not feeling supported.
What are you bringing back to the Ministry of Health from the meeting here today?
- That there is a huge gap that needs to be bridged and bridged as a matter of urgency. It is a huge gap that is easy to bridge, because the pieces are already in place, we only need to reorient the pieces and let them know what should be done. But we need to have something written down. Undersigned by the Ministry if Health that this is the care that we should provide.
Ostomy care in Botswana
Presentation by Chabo Lelaka, ostomy therapist from Botswana
About Botswana Ostomy Association
Botswana Ostomy Association (BOA) was founded in 2018 by ostomates and has around 2 000 members. Every patient is free to join and to access the service.
- Mr. Kefitlhile Kgotlanae, head of the organization.
- Mrs. Sadie Rahaho, secretary of the organization.
- Chabo Lelaka, an ostomy therapist from Botswana, is on the Board of Advisory and assisted her patient to start up the organization.
Patients should come to the hospitals as one voice and to the Ministry. We must advocate. For them to be heard loudly it should be one organization.
Coordinates ostomy services
Chabo Lelaka coordinates ostomy services over the whole country.
- My passion is to see these people to have dignified life, being at their best level fully functionality. They should fit well in each community, it’s a democratic right.
Her goal is to make all people of Botswana aware of what a stoma is, in the same way as everyone knows about malaria or tb.
Training for medical staff
There is no ostomy training in the basic education for nurses in Botswana. They learn when they start working at clinics.
Chabo helps with basic stoma care training for medical staff. In the north of Botswana, they trained 18 nurses and 18 pharmacists. And in the south 16 nurses and 16 pharmacists, and some doctors.
The rights of ostomates
- Preoperative care
- Appropriate positioned stoma site
- Well constructed stoma
- Skilled post-operative nursing care
- Emotional support
- Individual instruction
- Information regarding availability of supplies
- Information on community resources
- Post-hospital follow up and supervision
- Team efforts by all health care professionals
Health care system in Botswana
Botswana is a democratic country with a free health care system
Bags are being managed from central medical storage. After ordering it should reach people within 24 hours.
All ostomy patients have access to proper bags after surgery.
- One main challenge is to explain to patients why it’s important to be one organization and speak with one voice.
- Make the organization grow.
- We need more practical training.
- No office space or formal space for BOA.
- Gap of skilled people in the country. Not everyone has the passion.
Collaboration between countries is needed
Faizel Jacobs, South Africa:
- My experience, speaking as a lone voice, you are not always given the same sense of urgency as what is needed and with learning that many of the African nations are experience the same challenges, with a collective voice we will be taken more seriously. One common challenge is the rural areas, they have less access to medical care and are often forgotten about. Even though South Africa has access to products, not efficient products is given whereas other countries are not getting products at all. The greatest similarities is breaking the stigma linked to ostomy. Both the medical stigma and the community stigma of being dirty and cursed, God is banishing you.
Chabo Lelaka, Botswana:
- We are getting stronger together. Sharing of resources, starting with trainings together. It is very important with collaboration. We meet a lot of patients from Zimbabwe in Botswana, when we discharge patients, we don’t know where to advise them. It’s easier with South Africa, I am linked to stoma therapists there.
Linda Moyo, Zimbabwe:
- Cooperation between African countries is a good idea we could actually help each other in making the organizations be known better than every organizations trying to implement everything on it’s own to build the reputation on people knowing about ostomates. If African organizations could combine their voices, they can be heard louder. But cooperation between African organizations and European organizations is also very good, here in Africa we learn a lot from European countries because they are much more used to stomas, they have much more knowledge compared to here.
Benjamin Lungu, Zambia:
Patients with stomas – stories from real life
Wangu Naduyanda, 6
When Teresa Naduyanda’s son Wangu, now 6 years old was one week old his stomach was swollen and they took him to hospital. When he was five months old he had surgery and got a stoma. After a few months the doctors tried to reverse it, but it didn’t work. He had his second colostomy when he was 3 years old. A couple of times he was in ICU and Teresa did not know if he would make it.
- He went into a coma and I just cried. I thought my life had come to an end. At one point I was thinking of committing suicide.
- The worst thing is that the school is not accepting him, they won’t manage to help him. I go to school with him and wait outside the classroom. That means I can’t work. My financial situation is tough.
Peter Muziya, 68
Family: wife, six children, four grand children
Profession: retired banker, now a pastor in the rural areas
Reason of ostomy: Peter had colon cancer, the tumor close to the anus. They removed the tumor and cut off the intestines. He has a colostomy and had four bags from the hospital when he was discharged. He bought some bad quality ones from a shop.
- I was lucky enough to have a sister that married an American, they sent me supplies overseas. A supporting family, supporting friends and a supporting church is very important. I told the church about the cancer but not about the stoma.
Advice to others: Don’t be afraid. If you hide, nobody would be able to offer help. A problem shared is half solved.
Bwalya Kang’ombe, 50
Profession: Working for a hospital in public health.
Family: A daughter
She was diagnosed with colon cancer stage one 2010. After radiation and chemo that caused a lot of issues she had a colostomy 2014.
- At first it was not easy, the surgeons were good, but the nurses didn’t know anything. But I realized it was easier to live with the stoma than going through all the pain.
- She had great support from her family. Relatives in England sent her supplies for a long time.
- Now I enjoy life and I can do everything I like, dance and go out with friends. I would like to be an ambassador, helping other patients with ostomy.
Advice to others: Try to be happy. Don’t be too hard on yourself. God can’t give us something we can’t handle. Believe in yourself. Be grateful.
Lindah Zulu, 34
Family: Mother and siblings
Profession: working for an insurance company
Ostomy: colostomy, now reversed
Lindah Zulu had chronic constipation, starting 2011. She did scans, had laxatives but nothing helped. 2020 she had a colostomy but was reversed in May 2022.
- I had some problems when covid struck, it was hard to get hold of good bags. The most important thing as an ostomate is having a good bag, with that comes confidence. You feel safe and that you can jump if you want. I think what the world have done for HIV, could be done for ostomates. If everyone starts to talk about it.
Advice to others: Be positive, live your life, it’s not the end.
Rachel Nkunde, 23
Family: Mother and two siblings
Profession: Law school student
Ostomy: Ileostomy, reversed 2020
In 2019 she was diagnosed with typhoid fever after being rushed to the hospital with severe stomach pain. The doctors did a scan and the radiographer told her mum she had peritonitis. Her small intestine was perforated, and she needed an emergency operation to survive.
- When I came out of surgery no one told me anything. I had to learn about having a stoma through google. When I first had the stoma, it changed a lot. I was depressed and stayed in bed most of the time. I changed the way I dressed, no tight clothes. I had six months of leaking bags and I was very sad. I only told people I was close to I had a stoma because I feared the stigma that surrounds having a stoma so a lot of people didn’t even know I had it. It was when I met Benjamin from Stomacare Zambia and got good bags I started to feel comfortable.
Mubanga Chitambala, 23
Family: Mother, father, two sisters
Profession: bachelor’s degree in biotechnology, looking to emloyment
Mubanga went to India for four years, getting a bachelor’s degree in biotechnology. He came back in November 2020. Eight days after his arrival he was rushed to the hospital with stomach pain. His intestines were twisted. He was sent to surgery and woke up with a stoma.
- I stayed indoors and became antisocial. I thought I could never have a job. A doctor recommended Stomacare Zambia, and meeting with them helped me, counseling has helped a lot too. Now I know people with stoma that works, and I have been dropping my application at some companies, now I can proceed with my dreams.
Lizzie Moyo, 37
Family: Husband and a son
Profession: working for ILCO Zim Trust
Lizzie got sick when she was 12 years old. The doctors first thought she had HIV. After 8 years she was diagnosed with ulcerative colitis. In 2006 she had an ileostomy.
- After my surgery I failed to accept my new life, I was caught several times trying to overdose on my medication as I tried to end my life. Having a stoma hit me so hard, because I had no idea what it was or what it meant having a stoma.
Due to lack of proper bags she was using bread packaging plastic bags and then moved to sugar plastic bags which were much stronger. She secured the plastic bags with cellotape on her stomach.
Lizzie had good support from her family and learnt more about the stoma. Today she is married, has an 11-year-old son, and runs the stoma organization in Zimbabwe together with her sister.
- I have dedicated my life to help and support ostomates in Zimbabwe, and today I am a proud ostomate.
Barbara Mailoni, 37
Family: Husband and three kids
Profession: Nurse at Livingstone Central Hospital
Ostomy: ileostomy, reversed in July 2020
Two days after Barbara delivered her third baby with c-section, she had intestinal obstructions and perforation of the intestines. She had six operations done in two weeks and woke up from ICU and found a bag.
- I was devastated and stressed; I couldn’t carry my baby. I struggled a lot. It was hard to find bags, they were very expensive. I got rashes and my skin got burnt. When I found information, it felt better, and I got used to it. You can live a perfect life with a stoma, as long as you have the knowledge.
Faizel Jacobs, 49
Family: Wife and two sons, two stepsons
Profession: IT consultant
Faizel Jacobs was diagnosed with colorectal cancer 6th of May 2016. The 23rd of May he woke up with a stoma – that he referes to as a GIFT or Dolce and Gabbana.
- My journey with a stoma has been a challenge. It showed me how so many other ostomates are struggling with not just acceptance but also adjusting to a life with a bag.
His passion is running and since being diagnosed with cancer he has completed the Chicago Marathon, Knysna Marathon and Istanbul Marathon. In addition 22 half marathons and a triathlon.
He still has anxieties:
- The mall cops or airport security scenarios
- Whoopi cushions (the bag filled with air)
- No clean and safe space in public bathroom for bag changes
- Skin complications
- Medical Aid