Prilli Stevens was the Chief Professional Nurse in the Stoma Therapy Unit at Groote Schuur Hospital in Cape Town, South Africa; she retired in 2005. Prilli first met Dr Catherine Hamlin in 1995. Below is the second instalment of Prilli Stevens’ account of working with Hamlin’s Stoma Therapy team at the Addis Ababa Fistula Hospital.
The plight of young women in Ethiopia with obstetric fistula (openings between the bladder and the vagina and/or rectum and vagina) is well known . The remarkable dedication and skills of the team at Hamlin’s Addis Ababa Fistula Hospital completely revolutionised the outcomes for thousands of these women and in the main resulted in a satisfactory repair resulting in return to a life of continence and good health. Inevitably there are cases of such extremity that no surgeons – however skilled – could repair. Some patients will have had failed attempts in the past. Excessive fibrosis and small bladder capacity – damage to the urethra and constant urinary incontinence leaving the patients with either continual or stress incontinence rendering quality of life untenable.
So what can be offered to such patients ? Each patient needs careful assessment to ensure an appropriate procedure can be offered. It should also be realised that in spite of ‘good intentions’ of many visiting surgeons to developing countries, what works well in developed countries may well result in increased trauma and even disaster in the developing, if there are no skilled services and adequate consumable products available to adequately care for the patient in the long term.
Firstly, such operations require an experienced and skilled fistula surgeon familiar with the procedure. Further, a supply of appropriate consumable stoma pouching and products to render the patient continent for life.
Trained nurses with the skill and knowledge of managing intestinal stomas were introduced as a post graduate clinical nursing specialisation back in 1960 in the USA, the UK and Australia. Subsequently, this specialisation has spread internationally, and part of the patient’s bill of rights is to have such a skilled nurse specialist as part of their team . The first dedicated professional nurse to take on this role at Hamlin’s Addis Ababa Fistula Hospital was Sister Ruth Gadissa. The role was established in 2002.
Following my visits to the fistula hospital in 2002 and 2005, a further visit in 2010 was undertaken to see how things were going – and to meet the new guard! After gargantuan work by many, including Sister Ruth Gadissa and Sister Ruth Kennedy, back in the beginnings of this official service in 2005, there were now some major changes in personnel – and the prospect of a new department in the newly constructed and funded Oprah Winfrey wing!
Professor Gordon Williams, consultant urologist, had relocated from The Hammersmith Hospital in London to Addis permanently – having previously flown out at intervals to operate on more complex cases. His experienced presence made a huge difference to carefully assessing which patients required either a diverting intestinal stoma or, whenever possible, a continent procedure involving diverting urine without the use of a stoma pouch.
Gordon had a team of enthusiastic Ethiopian surgical trainees who were learning the mysteries of urodynamics and surgical options. Sister Ruth Gadissa, our first stoma sister in the pioneering service who was so capable in many roles within the hospital including the ward, theatre and stoma unit, had moved on and we welcomed Sister Tigist Debebe in her place. Tigist was further assisted by two nurse aids Aberash Misgun and Nisthu Bassie. Both these girls had the added advantage of having undergone stoma surgeries themselves and were a wonderful living example of well rehabilitated stoma patients able to return to productive roles in the community. Their assistance in supporting potential stoma patients the pre-operative phase cannot be over-estimated.
On a wet but red letter day the first week of my visit, Aberash, Nisthu and I prepared the new stoma clinic and moved into the Oprah Winfrey wing. We physically relocated all the stock we had – we carried the examination couch, chairs, privacy curtaining, a filing cabinet for keeping records on all our patients, order books for stock a desk and chairs for the staff. Further, this bright and welcoming facility enabled us to establish a comfortable area with arm chairs and a coffee table for our patients, a TV set for orientation visuals – all with a ‘non-medical’ feel to it. The models I had made in Cape Town lived in a cupboard ready to help patients understand the reasons for their incontinence and the way an intestinal stoma could work.
Our first patients were delighted with this private, pleasant environment. Most importantly, we involved other disciplines to assist us in preparing the patients emotionally and socially for the proposed surgeries. Time to listen to their stories and gain their confidence regarding their home circumstances and potential complex family dynamics. Making sure that informed consent was paramount, and the help of a social worker and, if required, a psychiatric nursing sister was added to the mix if there were issues regarding their emotional state. The presence of our two nurse aids, both of whom had undergone stoma surgery was of enormous value. Their counselling and support with ability to demonstrate in real life terms what a stoma looks like – how it functions and the advantages over their previous condition – cannot be overestimated.
Before any procedure to divert urine or faeces in any way, several criteria need to be satisfied.
So what can be offered when repair surgery has failed or is impossible?
A simple silastic urethral plug device can be inserted into the urethra and removed regularly to void urine.
When the urethra is blocked by fibrous tissue, the appendix can be sewn onto the bladder, bought onto the surface of the abdomen and catheterised to release the urine at regular intervals.
Utilising the caecum and a portion of the ascending colon, the ureters are diverted into this pouch and the terminal ileum bought to the surface of the abdomen – which facilitates catheterisation.
An ‘internal pouch’ is made out of two loops of sigmoid colon sewn together into which the ureters can be implanted. The patient voids their urine (and faeces) via the anus. Clearly, the patient requires to have good anal tone, as they will require to hold the urine for intervals both day and night.
The ureters are taken from the bladder and inserted into a segment of isolated ileum, bought to the surface of the abdomen as an intestinal stoma. The urine requires to be collected in a plastic disposable pouch.
A loop or end segment of colon is bought to the surface of the abdomen to divert faeces. Many of the colostomies can be reversed following successful repair of a faecal fistula but may become permanent if the repairs fail or are inoperable.
There are six key patient’s rights:
Prior to undertaking any surgical intervention, time and care is taken to assess the patient both physically, emotionally, socially, culturally and spiritually. No surgery is to be undertaken unless the patient is in full understanding of what it entails and accepts the concept. Time in reaching such a status may be several weeks rather than immediate, and can be greatly enhanced by a welcoming, friendly stoma care service – including trained nursing staff and the added support of others who have already undergone the surgery and are well rehabilitated. A social worker who helps with so many vital issues including contact with the patient’s nearest and dearest, vital financial issues and accommodation away from home. A psychology service which can assist in many ways. Orientating in the home language if necessary through an interpreter. Understanding of the cultural issues around such interventions and any spiritual needs. All of this results in a well rounded support and improve the outcomes for the patient.
The stoma team therefore have become an integral part of the wonderful services offered at the fistula hospital. They work tirelessly with pre-operative patients, as well as monitoring and supporting those in recovery and long term rehabilitation. Education and supplying stoma care products is a huge task. The latter having to be ordered for each patient – the order processed and dispatched to the retailer who happens to be based in Ireland. The orders only arrived at three monthly intervals at the port of Djibouti, and from there get delivered to the Addis Ababa Fistula Hospital. The appropriate supplies are then dispatched to stoma patients in each outreach centre, and personally taken to Desta Mender via the Addis Ababa Fistula Hospital. It is a fine line run – as no patient can do without their supplies – and should there be a hold up for any reason, it becomes as desperate situation for all concerned. Each patient has individual requirements: a specific size of aperture to accommodate their stoma; there are also potential skin problems to consider that may require specific adhesives and possibly some extras in the form of stomal pastes or washers and belt to ensure continence. It is not a case of one size or type of pouching fits all.
The figures for various types of urinary diversion requiring the services of the stoma department in September 2020 are:
ILEAL CONDUIT : 369
MAINZ 11 POUCH 133
BLADDER AUGMENTATION 22
Tigist and her team follow every patient very closely. After the initial surgery in Addis the rehabilitation time is variable depending on the general health of the patient and their ability to learn the practical aspects of applying their stoma bags and caring for their stoma. After the post-operative period, many of the patients stay for a further period, either in hospital or one of the residences or out at Desta Mender, whilst they stabilise and gain confidence. Some of the patients stay on at the hospital in roles as nurse aids or in one of the other departments. In order to ensure early detection of any renal problems, a routine check-up is accomplished after the first 45 days – thereafter they are seen at three monthly intervals progressing onto six monthly check-ups. The great joy has been the establishment of the outreach centres, as this has facilitated many of the patients to get back to their villages and be within reach of expertise and the stoma care products. For patients requiring to attend Addis Ababa and have travel costs, the fistula hospital provides the necessary monies for return transportation.
The establishment of Hamlin Fistula Regional Hospitals outside of Addis Ababa in Mekele, Bahir Dar, Harar, Yirgalem and Mettu, have totally altered the social outcomes for many of the patients. Instead of being tied to the main hospital in Addis Ababa for ongoing care and supplies, these regional hospitals have become a lifeline, enabling many fortunate patients to return to their homes after diversion surgery. Up until that point, the fact that stoma pouches were non-existent in Ethiopia except at the major hospitals in Addis meant that they could not get home. So one of the biggest projects for the stoma unit was to establish a regular supply of bags for each patient, and when possible, to get them to the nearest hospital for collection every three months.
As of September 2020, stoma patients are located at the following centres:
Sister Prilli Stevens SRN ET
Cape Town, South Africa
1 These figures include both new stoma patients and returning stoma patients
Learn more about the Hamlin Alumni that helped build the Hamlin Model of Care here.