Resuming activities with a stoma

A stoma, or ostomy, is surgically created for individuals with diseases such as colorectal cancer and inflammatory bowel disease (IBD). There are three main output stomas, the most common being the colostomy or the ileostomy (faecal stomas) and the ileal conduit or urostomy (a urinary output stoma).

During the formation of a stoma, the abdominal muscles are divided so that the bowel can pass through; it is then attached to the abdominal wall. Healing of the wound mainly occurs within the community setting. When it comes to the reintroduction of activities, it can be difficult to know how and what to prescribe. This article outlines ways in which individuals with newly formed stomas may resume activities in a community setting, and the guidance and advice that community nurses should provide.

Initially after surgery, people with a newly formed stoma are advised to avoid strenuous activities such as lifting heavy items; however, walking is encouraged. A recent literature review described a lack of knowledge about stoma care within the acute setting of nurses who did not specialise in stoma care (Dunne et al, 2021). In this review, nurses who had been qualified for longer and had more exposure to stomas demonstrated greater confidence. It could be argued that in the community, there is more contact with people with a stoma than in the acute setting. However, without consistent exposure to stoma-related issues, confidence in providing advice may be limited.

There are no definitive guidelines on restarting physical activities. There are several conditions that could influence this, such as the type of surgical approach taken to create the stoma. Smaller incisions will usually heal faster than large ones, meaning that people who undergo laparoscopic or robotic operations will be able to resume activities faster than people who undergo open operations; for example, people who take medication such as steroids may encounter issues with delayed wound healing. If in doubt, people with a stoma should be advised to ask their surgeon about activities such as exercising.

Mobilisation exercises such as walking are allowed in hospital and are necessary to prevent complications such as chest infections and blood clots, both of which can occur in the postoperative period. So long as the weather is favourable, nurses should encourage people with a stoma to take a walk each day. The distance walked can be increased as is tolerated by the patient. It should be possible to increase the time spent walking on a weekly basis post surgery.

In general, people are advised to be careful when lifting heavy objects for up to 3 months following surgery, although this time can be dramatically shortened for people who recover well from minimally invasive operations with small wounds. It is also useful to give patients specific advice relating to the community/home settings. For example, it can be useful for patients with young children in the family to be advised that instead of lifting children, the person with a stoma bend to the child, or sit down and encourage the child to get onto their lap. Lifting a kettle of water is the maximum weight that is often encouraged in the initial days after surgery. Even shopping can be difficult if bags are heavy to lift. To help in these situations, family and friends can be encouraged to assist in the initial weeks after surgery.

Reintroducing activities may be avoided due to uncertainties. Toma et al (2022) in their Italian patient survey reported that half of their 403 respondents (people with a stoma) had reduced their housework and domestic activities. Furthermore, activities performed outside of the home were reduced for 61% of these respondents, while work-related activities stopped for 63%. Toma et al (2022) also reported that 10% of respondents no longer left their house and social activities were avoided by a third of respondents. Putting these results into context-one in 10 respondents had their stoma for under 2 months and thus would not be expected to be back to their usual activities at that stage. Additionally, one in four participants had a temporary stoma formation. It is recognised that adaptation to a stoma is less common for people who have a temporary stoma compared to a permanent one. This is because they often put their life on hold while waiting for the stoma reversal.

There are some simple exercises that are safe to undertake immediately following surgery. Core muscle strengthening exercises are generally safe to undertake from 3 months after surgery or before, with permission from the surgeons. Most people would be able to gradually increase their activity levels to include heavier activities 3 months after surgery. In the long-term, swimming is also possible once the appliance is ensured to be intact and secure. If a drainable stoma appliance is used, then it should be emptied prior to swimming. Contact sports are also possible, though it might be useful to consider the use of a stoma shield which is available from some stoma companies via prescription. Stoma shields are attached with an elasticated belt over the stoma appliance under clothes, and protect the stoma from inadvertent damage.

Blake Beckford described his own journey as a young man with IBD who underwent a stoma formation (Beckford and Clifford, 2014). Blake gradually worked his way to fitness post-surgery, waiting until he felt strong enough to exercise, at about 3 months after his stoma was formed. Blake describes walking, jogging, swimming and using the gym, and within a year of surgery, had improved physical fitness and developed a ‘six pack.’

Resuming usual activities can be difficult and people may worry about developing a parastomal hernia. The formation of a parastomal hernia or a parastomal bulge is common. In a recent UK survey of over 500 people with a stoma, a third had been diagnosed with a parastomal hernia. One in 10 of these individuals had a bulge which they suspected might be a parastomal hernia but did not received an official diagnosis for it, while one in 10 had previously undergone a parastomal hernia repair (Vernon et al, 2022). Similarly, in a survey completed by over 1500 people living in the UK with a stoma, almost half had a bulge around the stoma but many people did not wear a support garment (Taylor et al, 2020). According to an Irish study (Thompson and Trainor, 2007), prevention of a parastomal hernia has been shown to be possible in the short-term (up to 3 years) by performing simple exercises including pelvic tilting and knee rolling, as well as by wearing a support belt. However, support belts can be uncomfortable to wear as they are tight and cause perspiration in hot weather. Furthermore, such support garments can also be difficult to apply for people with dexterity issues.

Driving after stoma forming surgery should initially be avoided. It is important to ensure that an emergency can safely be navigated, such as when someone unexpectedly crosses in front of the car. With postoperative pain and healing, it is important to consider whether one can perform an emergency stop. The other aspect to consider is the types of medio-legal and surgical rules that exist.

Travelling with a stoma requires careful planning, as holidays can be restful but often involve physical activities such as walking, carrying suitcases and travelling long distances. Before going on holiday, it can be useful for people with a stoma to try smaller trips to increase confidence. Air travel is possible, but it is advisable to take twice as many stoma products as are usually used in the same time period. The products can be carried in hand luggage, to reduce the concerns of lost baggage. When contacted in advance, some airlines may allow extra hand luggage for medical products.

Information about participating in sexual activities might also be something that the community nurse may have queries about. It is usually possible to have sexual intercourse following a stoma formation. There may however be some changes noticed. For example, if they have had their rectum removed, women might find that the position of their vagina may have altered and this may alter sensation. In a survey of over 600 people with a stoma, sexual compromises were reportedly made by about one in three people, such as having to change sexual position (Dames et al, 2021). Men might experience erectile dysfunction if they received nerve damage during treatment. Such damage may be temporary or permanent; in the case that it is permanent, the individual should have had a discussion with the surgeon prior to surgery. Other options for men include medication, that can be addressed by the GP. It is possible to have a baby with a stoma, although getting pregnant can be more difficult for people after colorectal surgery (Blackwell et al, 2022).

It is also important for nurses to recognise when activity participation is reducing. This may be due to depression, dementia (Fossett and Willoughby, 2019) or aging. If noted, the nurse can make appropriate referrals to address these issues. It is also important to recognise that people with a stoma may not seek assistance when they have issues with their stoma, which the community nurse may establish during assessments for other issues. It is known that having stoma-related complications, such as leaks, can reduce quality of life (Nichols and Inglese, 2018). Thus, intervention is needed, which may involve advising the patient to contact their stoma nurse for reassessment of their needs. Nurses can provide advice and signpost patients to stoma charities or stoma companies' websites for further sources of information (Table 1).

Community nurses can therefore help people with a stoma to resume their lifestyle after their stoma forming surgery. This might involve giving advice, signposting to useful websites as well as making referrals as needed.