Living with a stoma for older adults

Advice for older adults living with a stoma

Whether you are living with a stoma, or you are a caregiver helping an older adult to take care of theirs on a daily basis, there is a lot to think about. Here, we are breaking down what you need to know, including what a stoma does, why a person might have one, the ways in which it can change your life, how you can perform stoma care at home, the dietary changes you may need to make, specific challenges of living with a stoma, and how to help as a caregiver. 

At Home Instead, our aim is to help people age positively and in place by bringing expert care to their home. For nearly 20 years, we have been providing the highest standard of care, and creating industry-leading training programmes for our Care Professionals that are accredited by nursing and medical professionals. Today, we are the world’s largest global domiciliary care network, supporting over 100,000 older adults with personalised, tailored care at home. So whatever questions you have about stoma care, we can help. 

Why might someone need a stoma? 

There are a number of reasons a person may require a stoma due to compromised bodily functions, and as people age, they become more susceptible to various medical conditions that may necessitate the creation of a stoma, such as: 

• Colorectal cancer which requires removal of part of the colon or rectum
• Inflammatory bowel diseases, such as Crohn’s disease or ulcerative colitis, which requires the removal of diseased sections of the intestines
• Diverticulitis which may require surgery to the large intestine, followed by a temporary stoma to allow the intestine to heal before reattachment
• Bowel obstruction which requires emergency surgery 
• Weakened pelvic floor muscles or decreased bladder control, which can lead to bladder dysfunction, urinary incontinence or retention issues

There are many reasons for stoma surgery to be performed, and this could be for the management of chronic health issues, as well as in an emergency requiring swift intervention in order to preserve health. 

Older adults tend to have a higher prevalence of comorbidities, which makes them more prone to complications such as bowel obstructions or perforations – these may require stoma surgery to help manage. While they can seem complicated and can impact quality of life, stomas provide a vital solution for the management of bodily waste when the natural pathways are impaired, and can help older adults to lead a life free from health conditions that affect their bodily functions.

How can someone look after their stoma themselves at home?

When a stoma is first created, a patient will usually have physical and psychological support from healthcare professionals and caregivers in order to handle the immediate consequences of the surgery, such as physical changes, getting used to the stoma routine, handling subsequent anxiety and depression, and more. However, when a stoma becomes fully functional and a patient feels more confident taking care of their own stoma, nursing staff can take a step back. Eventually, patients may require less and less help from their stoma nurse and can manage their stoma independently.

If you or your loved one wish to transition to taking care of your own stoma, here are a few considerations: 

• Hygiene – This is one of the most important parts of stoma management, as the stoma and surrounding skin will need to be regularly cleaned to prevent infections and irritation. This can usually be done with warm water and a gentle soap, but you should confirm what is best for your stoma with your nurse or the medical professional who initially looks after you post-surgery. They will likely recommend you avoid cleaning with harsh chemicals or potentially irritating skin products. 
• Inspection – Getting your stoma regularly checked is important to catch any signs of irritation, infection or changes. If you notice signs of any of these, you should contact your GP or stoma nurse to have this checked as soon as possible. 
• Changing your pouch – Stoma care requires frequent changing of the stoma pouch, and usually you can become used to doing this over time with the help of your nurse or doctor. Changing your pouch requires correct positioning and a secure fit to prevent leaks and irritation. 
• Hydration – Part of keeping a healthy stoma is to stay hydrated in order to maintain normal bowel movements and avoid dehydration which can impact stoma function. You may find our guide helpful to recognise the signs of dehydration in older people.
• Leak readiness – Many people will inevitably experience occasional leaks or failures in their pouch, so it helps to keep ‘emergency’ supplies handy, especially if you are out and about. While leaks are not an actual emergency situation, you will definitely want to clean these up for hygiene reasons and due to the sensitive nature of these leaks. Keeping extra pouches, wipes and anything else you need for unexpected leaks can help you feel more secure and confident being away from home. 
• Stoma maintenance – Over time people with stomas start to understand the little tips and tricks that make stoma maintenance easier. For example, avoiding excessive sweating which can loosen the tape holding the pouch in place, avoiding using skincare products containing alcohol or oil around the stoma site as alcohol can dry out skin and oil can affect the pouch attachment, shaving any hair around the stoma site to help the pouch remain attached, and more.  

People who have lived with astoma for a long time often start to feel comfortable enough managing their own stoma, but as they grow older many can come up against issues that make this more difficult, such as physical or cognitive impairments. For this reason, stoma care from loved ones or a professional caregiver can be helpful, or in some cases essential.

Should any activities be avoided with a stoma? 

Having a stoma does not mean a person needs to give up all the activities they enjoy, but some alterations may need to be considered in order to remain safe and healthy. For example, contact sports or any activities that come with a high risk of impact to the stoma may need extra protection. You will find lots of great resources and advice on undergoing physical activities with a stoma on the ColostomyUK.org website. 

Some people also worry about intimacy and contact with others when living with a stoma, but as long as care is taken, this does not need to be entirely avoided. With an understanding of stoma function and support from loved ones, many people can continue to lead fulfilling lives and do not need to cease any of the activities they enjoy.

For some people, particularly older people, a stoma may make them feel anxious about going out, socialising, and doing anything that may lead to embarrassing leaks. While anxiety around stoma care is normal, it is important to try to manage emotions and continue to enjoy activities and socialising as normal. 

What stoma-related challenges might come up for caregivers?

Caregiving for someone with a stoma can be difficult, as managing the stoma will be a big part of the person’s daily routine. Knowledge of changing the pouch, stoma-adjacent skincare, and recognising signs of complications like infections or leakage are all important aspects of stoma care for caregivers. There may also be emotions to contend with if you are caring for a loved one who is struggling with the adjustment to life with a stoma, so conversations about body image or self-esteem may come up. 

As a caregiver you will need to help with things like managing stoma supplies, assisting with daily changes, helping with bathing or getting dressed while living with a stoma, and keeping on top of the person’s health needs by ensuring regular stoma checks are done by a healthcare professional to catch any signs of infection or underlying issues. 

For older adults, things like arthritis and other conditions affecting dexterity can make stoma management harder, as well as visual impairments and other health conditions. One particular challenge caregivers may face is managing a stoma for someone with a memory loss condition like dementia or Alzheimer’s. An older person with a dementia condition may forget they have a stoma in place, forget to empty it regularly, or become agitated that they have one. In the early stages of dementia, written instructions and checklists in the bathroom could help, as could setting up subscriptions to have stoma products delivered on a regular basis so the person does not need to remember to order them. 

In the late stages of dementia when the person may have lost their ability to look after themselves, a stoma care nurse or dedicated caregiver may need to step in to ensure this is managed effectively.

How can a caregiver help an older person living with a stoma?

Caregivers can be vital in supporting older adults with stomas, whether they are just getting used to their new reality, or they have had a stoma for years but are now developing additional health conditions making stoma management more difficult or impossible. There are a number of ways a carer may help with stoma management, including: 

• Encouraging adherence to their own stoma management routine to help them stay organised and independent 
• Transporting them to stoma-related health appointments 
• Checking the stoma site regularly to anticipate potential signs of infection or underlying issues 
• Advocate for their needs within the healthcare system 
• Offering emotional support by listening to their concerns and providing reassurance 
• Assisting with daily stoma care tasks like pouch changes or skin cleaning – different pouches and conditions require their own pouch change schedule, but in many cases they must be emptied at around ⅓ to ½ full to avoid leaks, and pouches may be intended for use anywhere from one day to one week before they need changed

If you are living with a stoma yourself, or you are helping to care for a loved one with a stoma and believe you require more assistance from a professional caregiver who can bring stoma care expertise to your home, our Care Professionals can help. Our team members are specially trained and equipped to handle the individual health conditions of their clients, and stoma care is something we can offer in the comfort of your own home. 

Home Instead’s Care Professionals are trained to the highest clinical standards and can work alongside your own doctors and health teams to ensure you receive the best care at home. Whether you require hourly care for a few hours a week, a couple of hours daily, or 24-hour live-in care to support your needs, we can help provide the bespoke, person-centred care you need. Reach out to the Home Instead team to discuss your needs and allow us to create a personalised package to support you.