A reported 165 000–200 000 people are living with a stoma in the UK, with approximately 21 000 patients undergoing stoma formation surgery each year (Colostomy UK, 2021).
The most common diseases leading to the formation of a stoma are bowel or bladder cancer, inflammatory bowel disease and diverticulitis; stomas are also formed as a treatment for faecal incontinence, familial adenomatous polyposis, Hirschsprung's disease, spina bifida and Ehlers-Danlos syndrome, or to improve the patient's quality of life in these and other conditions (Burch, 2005). Stomas can be temporary (ileostomy and colostomy) or permanent (ileostomy, colostomy or urostomy).
Ostomates are supported by stoma care nurses in hospital at the time of surgery and following discharge into the community; they will, essentially, never be discharged from the stoma specialist nursing service (Burch, 2008).
Stoma care nurses support ostomates with a variety of stoma-related issues throughout their lifetime (Nugent et al, 1999). These include pouch leakage, fear of certain social activities and difficulties with body image and intimacy. Such common difficulties are often triggered as soon as a patient has undergone surgery but they can arise at any time. Although these issues may be short term for some ostomates, for a substantial proportion they can be long term.
As part of preoperative education, patients are shown a variety of pouches and are encouraged to wear these before surgery to familiarise themselves with the pouch's position and how it feels on their body following stoma siting. If patients are familiar with products before their surgery, they manage them more confidently postoperatively as they know how to apply, remove and empty them (Carli et al, 2017). Mahjoubi et al (2010) reported on a survey that found a well-placed intestinal stoma was strongly related to a good quality of life, and patients with appropriate stoma sites have fewer postoperative problems and a better overall recovery.
Unfortunately, not all patients can be afforded preoperative stoma siting and education as they require emergency surgery, Cottam (2007) notes that patients undergoing emergency surgery are more likely to have stoma-related problems.
Quality of life after stoma formation
Marquis et al (2003) noted that patients' quality of life improves steadily following surgery if, in the first 3–6 postoperative months, they have a good relationship with their stoma care nurse, are confident in managing their stoma appliance and are satisfied with the care received. These are important for overall recovery.
Postoperatively, stoma care nurses offer patients a choice of pouches as they are aware that no one pouch will be suitable for every person.
Quality of life is subjective, and is often seen as multidimensional as it can include both positive and negative aspects of a person's life. Measuring it can be difficult as it tends to be built on an individual's own perception of their experience with health and illness (Carr et al, 2001).
For many ostomates, stoma surgery is life changing and affects their quality of life. A recent study by Petersen et al (2021) found that patients with a stoma lived with uncertainty as they would have to adjust to a new body that they did not yet trust or accept. A similar study by Anaraki et al (2012) established that the quality of life of those who lived with a stoma was, indeed, affected.
Ostomates strive to regain control of their lives with support from family members, health professionals, their own resources such as Colostomy UK, the Ileostomy and Internal Pouch Association, the Urostomy Association and online support groups.
Pelican ModaVi
Pelican Healthcare, a manufacturer of ostomy products throughout the UK, aims to make products that allow ostomates to live life with dignity despite having a stoma.
It has created a range of products that are driven by insights gained from intestinal ostomates and take their unmet needs into consideration.
During Pelican's research with ostomates and nurses to support the development of ModaVi, it became clear that current stoma products appeared and felt medical and did not empower ostomates to live life to the full. Additionally, patients felt these products did not provide solutions to everyday problems associated with having a stoma such as ballooning, leakage and sore skin.
The Pelican ModaVi range is designed to be practical in terms of performance, comfortable and stylish, and to address unmet needs. Eight innovative features incorporated in the range allow ostomates to take control of their day-to-day stoma care, and have the potential to improve their quality of life. These are: a soft, water-resistant fabric; a choice of colours; a shape that makes it more discreet and better suited to daily life; the ‘discretion fold’ so its size and shape can be changed; a smart structure to maintain shape; a larger viewing window; a simple outlet; and an advanced filter.
Product development and evaluation
Pelican Healthcare conducted research with 65 ostomates, which highlighted the common problems they were experiencing postoperatively and how the Pelican ModaVi range has alleviated many day-to-day problems.
Participants in a previous study had used terms such as ‘restricted’, ‘embarrassing’, ‘difficult’ and ‘inconvenient’ when discussing their day-to-day frustrations (Haughey et al 2017).
Before developing ModaVi, Pelican established that ostomates wanted a product they could feel confident and comfortable wearing and that would be compatible with all activities of daily living.
Nurses are required to consider and address any issues that might affect patients in the long term, including changes in body image, adapting to having a stoma, preventing or treating complications associated with a stoma and long-term follow-up (Burch, 2017). Yet a large portion of people with a stoma continue to experience problems and are unable to live the life they want to live (Brown et al, 2005). Nurses in the community often see patients whose confidence is low because of having a stoma and its associated issues.
Initially, when patients are shown a selection of pouches, they will often choose one because of its look and feel. Having an input into this decision-making will make them more confident in using the pouch.
ModaVi is available in black and neutral colours. Ostomates have described the two colours as ‘less medical’ and ‘more premium’ and said they ‘can wear them with a wide variety of clothes’. Women often coordinate their underwear colour and, having a choice of pouch colour helped them feel more confident. Male ostomates said that black pouch blended in with their work uniform or clothing, including gym attire so they, too, should have better confidence.
The overall look and feel of both black and neutral pouches were rated as ‘excellent’ by 80% of ostomates as they allowed them to wear what they wanted. Ostomates can order both colours and can decide on a day-to-day basis which colour they want to wear, and this freedom of choice increases their confidence in how they look and feel.
Another common aesthetic and functional need ostomates experience is the freedom to shower or bathe daily. This was prohibited by pouch fabric that soaked up water and was difficult to dry. Many ostomates felt they needed a fabric that would dry quickly and was water resistent.
Patients can be shown that if the ModaVi pouch is made wet, the water beads and the pouch remains dry. This water resistance is invaluable for those who are active as they can shower or swim without having to change their pouch, thus reducing both pouch use and time spent on changing stoma appliances. One ostomate said ‘the bag dried fantastically’.
An additional feature that was incorporated in the design is a discreet notch at the end of the pouch that allows water to drain away quickly during showering or bathing. This allows people to shower with peace of mind that water will drain away instantly rather than collecting and pooling in the pouch cover.
When it came to the look and feel of the fabric ModaVi was described as ‘stylish’ and ‘soft’. It was said to be so comfortable against the skin that one ostomate said: ‘I forgot I was wearing a bag.’ Many patients with established stomas commented on the new fabric and its smoothness, stating that, even when against their skin, it never felt moist or sweaty.
The third feature in the Pelican ModaVi range is the shape, intended to look less medical, and its discreet profile, which allows ostomates to carry on with everyday activities without being restricted by their pouch. One ostomate stated the shape ‘gives you the illusion it's smaller than other bags’. Pelican's research found this feature alleviated anxiety in patients who were focused on pouch size.
Following on from the discreet shape, this pouch has a unique viewing window. This was incorporated into the Pelican ModaVi range as ostomates wanted a larger window to check on their stoma and output. This will make a difference to ostomates as it allows them greater visibility for positioning and monitoring their stoma and pouch content, which is especially useful in the immediate postoperative period.
The positioning of the pouch is key to good stoma practice. The stoma needs to be centred in the aperture of the pouch, and this unique window allows greater visibility to do that. The window allows patients to position it accurately and builds their confidence in pouch positioning from day one. Ostomates' comments include ‘the window is easier to track things’ and ‘when I did my bag change, I had a full view of my stoma’.
This feature could also give nurses and doctors a better view of the stoma when reviewing patients with an established stoma and, for the ostomate, this could be a more comfortable and discreet experience, as they can pop the window open so a nurse can review the stoma rather than them having to remove their pouch. Nurses can also check that the aperture size is correct without pouch removal by checking that no peristomal skin is visible.
One unmet need for ostomates that was highlighted in the research findings was a bag that changed size and shape for certain activities. Therefore, there is a ‘discretion fold’, which aims to gives ostomates the flexibility to change the pouch size and shape. It can then easily be increased back to that larger size to aid a better night's sleep.
One ostomate described the feature as perfect for ‘holidays, intimacy and for photos’.
As McGrogan (2021) suggests: ‘We should look to industry to continue developing more discreet and appropriate appliances for use during intimate moments.’
Ostomates need to feel comfortable with their pouch in all situations and one ostomate said ‘reducing the size makes me feel more secure’. Security is so important for ostomates and being able to have the option to wear the bag folded or down was a genuine plus point for the survey participants.
Another piece of insight derived from Pelican's research concerned women being able to wear regular underwear. With the fold, they were able to return to wearing underwear they had not worn since before their surgery. This gives women an element of control and boosts their confidence.
In a similar vein to size and shape issues, ostomates and nurses thought there was an opportunity in the ostomy market for a pouch that filled up evenly and did not bulge or sag and become noticeable under clothing. This insight led Pelican Healthcare to incorporate a smart structure that allows the pouch to keep its form, structure and shape when filled. ModaVi pouches include a ‘smart c-weld’ (at the top of the device), which adds form and structure to the bag. Additionally, for closed pouches, a ‘smart lobe’ (at the bottom of the pouch) has been incorporated to provide extra structure. One ostomate described the ModaVi pouch as ‘indestructible’ while another ostomate said ‘it did not deform at all’.
Ostomates were also asked during their trial period with ModaVi if output distributed evenly during wear and 73% said it did. Many established colostomates in the community need a large (maxi) pouch as they have reverted to their normal bowel motion. This can lower confidence because of the sheer size of the pouch. However, the size and shape of the ModaVi pouch means the contents are spread evenly across the bottom of the pouch; this prevents the pouch from both sagging at the bottom and the weight of this dragging it downwards.
A simple outlet is another innovative feature. During the research phase of designing and developing a new range, Pelican Healthcare sought the advice of nurses and ostomates who had requested to keep the outlet as simple as possible. Therefore, ModaVi was designed to enable the outlet to be used and cleaned quickly and effectively. This outlet is wider than those in pouches currently on the market to cater for colostomates who wish to use a drainable pouch to reduce pouch use.
Additional features include easy-to-grip ‘ears’ to help with opening the outlet. These can be felt by ostomates of all dexterity levels or those with poor eyesight. Scalloped edges mid-way down the outlet also aid with opening the drainage section with ease. This will be particularly useful for those with poor eyesight as they will be able to feel where they need to pinch.
One ostomate said that they ‘hadn't seen tabs like this before’ and that ‘they were helpful when emptying in the night’. Older ostomates with poor dexterity found the ears beneficial when opening, and found the pouch closed easily with minimal effort. This affords ostomates peace of mind that the pouch will not open unexpectedly when they are wearing it.
Ostomates found it useful to have a clear pinch point when emptying the pouch in limited light. This will support ostomates with quicker and smoother overnight pouch emptying.
Another concern that ModaVi aims to address with its wider outlet is to decrease the volume of output left behind in the pouch. One ostomate said ‘the wider chute is so useful’ as it allowed complete emptying.
The final feature to highlight within the Pelican ModaVi range is the improved filter.
Many ostomates lose confidence once their stoma has been formed because of the unpredictability of life; however, as Brown (2017) said, ‘many people accept, adjust, and adapt to their altered body function’.
One anxiety is the stoma making a noise and producing flatus and odour. Therefore, Pelican Healthcare has designed a filter to minimise ballooning occurring and to control odour. The new pouch has a dual-filter system incorporated in the design that allows for a greater flow rate out of the pouch thus preventing ballooning; the filter contains six times as much carbon than Pelican Healthcare's older pouches to help reduce odour.
This filter has allowed several ostomates (65%) to carry on with day-to-day activities. Ballooning is a frequent problem for most ostomates, and can affect daily living, for example when in the workplace or out socially. Therefore, preventing or decreasing ballooning will increase confidence when in the company of others.
The other theme that supported the design and development of the outlet was sleep. The insight into sleep taught Pelican Healthcare that many ostomates have to set alarms at night to release air from the pouch. Colostomates are one group of people who are aware of how much flatus has passed overnight. One ostomate, having used ModaVi, reported that they ‘did not have to get up in the middle of the night to empty the bag full of air’; this is another feature that helps patients regain control and improve sleep.
Ostomates often restrict their dietary intake of favourite foods, such as green vegetables, fish and eggs if they are aware that they will produce foul-smelling flatus. The improved filter has allowed ostomates to return to their normal diet and enjoy these foods once again without anxiety about their effect on wind production. One ostomate said ‘There was no smell from the bag whatsoever’, which delighted his wife who is familiar with the production of unpleasant odours. Therefore, this feature has an impact not only on the ostomate who is wearing the pouch but also the wider family circle.
Conclusion
Ostomates strive to regain control of their lives after surgery with support from family members, health professionals and support groups.
Pouches designed around the needs and preferences of ostomates, such as the Pelican ModaVi range, can support this. The ModaVi range has innovative features that designed to enable patients have an sociable and active lifestyle. The products have been reviewed favourably by ostomates.
Products such as the Pelican ModaVi range mean patients have a bag for living rather than a bag for life.
Case study 1
Young, active man with ileostomy
An active man aged 31 years had an ileostomy 2 years ago. Following recovery from surgery, his priority was to regain his fitness and get back to running and working out in the gym.
He wears his pouch for long periods, and wanted a that would fit with his lifestyle, could withstand vigorous workouts and, at the same time, would look good and be comfortable to wear.
He had previously tried several pouches from other manufacturers and, while he liked certain elements, he had not yet found a pouch with all the requirements he was looking for.
He trialled the ModaVi one-piece and found it ‘incredibly comfy’ to wear in terms of shape, size and fabric. He found the base plate fitted well to his body and did not wear away or go hard, something his had experienced with previous one-piece systems.
He reported that after running 10K, the pouch remained stuck on, he did not experience any issues and he felt it was ‘indestructible’. He said the pouch had not moved or rubbed despite him getting very sweaty and had remained secure while he showered with no issues with the flange or seals. He also stated that the water drained through and that the bag fabric dried ‘incredibly quickly’ after showering and still looked good.
He is continuing to wear ModaVi as it fits meets his requirements.
Case study 2
Man in late middle age with ileostomy
A man in his late 50s, was diagnosed with ulcerative colitis in 2008 after many years of illness, resulting in surgery in 2012. He has a busy lifestyle and works full time as a bus driver. He keeps active but, because of the nature of his job, spends a lot of time siting down. He also has a parastomal hernia.
He was experiencing problems with pouch size, flatus and the ability to get the flange over his hernia without a crease.
He was wearing a flat flange but creases were always present and he was constantly concerned he was applying it incorrectly. The creases allowed flatus to escape, which he described as noticeable. He was changing his pouch three times a day and reported that he often changed his pouch when it contained flatus and no faeces, and he felt it malodorous. He was particularly conscious and concerned of the impact any odour would have on his passengers.
He tried a ModaVi two-piece system. His initial test was over a 10-hour shift driving his bus. He did not experience any ballooning or pancaking (when the sides of the pouch stick together, which prevents output falling to the bottom of the pouch and can block the filter) that he had previously experienced, making his driving far more comfortable. The pouch sat under his clothing, he said.
The filters were working ‘absolutely perfectly’ he said, adding that since he had been trying ModaVi, his wife had not commented that his pouch was smelling.
He reported that he did not experience ballooning overnight and that his wife had said she was unaware of any odour, other than when he was changing his pouch. Before the trial, she had often told him it was noticeable. He feels a great sense of reassurance that no one can smell the contents of his pouch. He continues to wear ModaVi.
Case study 3
Young woman with ileostomy
A 23-year-old woman was diagnosed with Crohn's Disease aged 12 and had stoma surgery at the age of 13.
Sleep was a big issue for her. She commented that every night without fail she has to get up and empty her pouch, blaming this on air filters not working well.
She trialed a ModaVi medium-sized drainable pouch. She described it as ‘really really great’, and was positive about all aspects including colour, shape, viewing window and fabric. She could see herself using the discretion fold at numerous times including for holidays, exercising and intimate moments. In terms of filter performance, she reported that it worked ‘amazingly’. It solved the night-time ballooning problem. She no longer had to rise to empty flatus from the pouch and was able to have a good night's sleep. She is continuing to use ModaVi.
Case study 4
Young woman with ileostomy
A young women aged 26 years has had an Ileostomy for the past year, as she had experienced inflammatory bowel disease since her teenage years. She is married and has an 18-month-old child.
Her problem was pouch size. Because of her small frame, a medium-sized pouch was too big and a smaller pouch needed frequent emptying as it did not have sufficient capacity during either the day or at night.
She was also struggling with the pouch during intimate times. She felt the medium-sized pouch moved and became noisy and, when she taped it up out of the way, it pulled on her skin and ‘spoilt the moment’.
If she wore a small pouch, she had to change it before going to sleep. She struggled with this constantly and felt guilty as her life had been so much better since her surgery; her physical health was so improved she felt mentioning it would make her appear ungrateful.
Her husband was very supportive and understanding and knew she was not enjoying their private life as she should be. He tried to reassure her that he understood her anxiety regarding intimacy.
She was given a medium-sized ModaVi pouch and shown how to use the discretion fold to adjust the size for certain scenarios such as intimacy. Intimacy became much less of a worry due to being able to quickly fold up the pouch allowing greater discretion and confidence. She also commented that the fabric was soft against her skin and that the pouch didn't rustle. She had a very positive experience of the product and continues to use it.
KEY POINTS
- Ostomates want products that make them feel confident and comfortable, and are compatible with everyday life
- Patients are never discharged from the stoma specialist nursing service
- Nurses should work closely with industry to develop more discreet and appropriate appliances for all ostomates
- Ostomates want a pouch to be discreet to enable them to take part in all the activities they wish to participate in
CPD reflective questions
- Do you feel you have adequate time in outpatient clinics to delve into patients' inhibitions of living with a stoma?
- Considering Covid-19 restrictions, do you feel you can initiate conversations about intimac y online or is it easier face to face?
- If a pouch does not leak, do you find patients will ‘put up’ with a pouch they do not particularly like the look or feel of? Is this something that nurses consider?