If you’re going to look after someone with a stoma, you might be concerned about how you’ll manage, especially if you don’t have any experience with stoma care.
Not everyone with a stoma needs personal care, and lots of people can manage their own stomas. However, people with additional health needs, or who already receive personal care, may need a carer to provide stoma care.
There’s lots to consider about stoma care, including changing stoma bags, diet, skincare and hygiene. However, whether you’re a professional carer or a family caregiver, it’s possible to help someone have a great quality of life with a stoma.
We’ve put together a guide to the different types of stoma, bags and some tips for caring for someone with a stoma.
A stoma is an opening in the abdomen, connected to part of the digestive or urinary system. It’s created during surgery, and allows waste to be removed if your bladder, bowel, colon or other systems no longer work.
A pouch or bag is placed over the opening to the stoma. Waste (faeces or urine, depending on the condition and type of stoma) is diverted from the colon or bowel into the stoma bag.
There are lots of reasons people may need a stoma, including:
People of all ages might need stomas – there are over 170,000 people in the UK living with one!
Some stomas are temporary. They’re intended to last for a short while until the body heals. Others are permanent, for example if the bladder or part of the bowel has been removed.
A colostomy is where some of the colon (large bowel) is used to create a stoma. A stoma bag collects the stools (poo).
There are two types of colostomy: loop and end colostomies. Loop colostomies involve a loop of colon being pulled through the abdomen, and end colostomies are where one end of the colon is pulled through a cut in the abdomen and the diseased or damaged bowel or colon is removed. In both cases, part of the colon is stitched to the skin the create the stoma.
Colostomies can be temporary or permanent.
An ileostomy is where some of the ileum (small bowel) is used to create a stoma. A stoma bag collects the stools (poo). If your client or loved one has an ileostomy, the stools in their stoma bag will be soft. It will probably need to be emptied between three and six times a day.
As with colostomies, there are two types of ileostomies, loop and end ileostomies, and they can be temporary or permanent.
A urostomy is where some of the small bowel is connected to the ureters, which carry urine, to bypass the bladder. Urine then comes straight from the kidneys into the stoma bag. Urine will flow continuously into the bag, which has a tap at the bottom so it can be emptied into the toilet.
Sometimes a urostomy is called an ileal conduit.
There are several different types of stoma bags. Your client or loved one may already have a preferred type of stoma care products, or they may want to ask their stoma care team for advice.
Stoma bags are often unnoticeable under clothes, and they don’t rustle or smell.
If the stoma is permanent, your client or loved one may be able to get their bags free on the NHS. If it’s a temporary stoma, they may need to pay for them if they currently pay for prescriptions.
One-piece stoma bags are, as the name implies, an all-in-one system, including the bag and adhesive. When you need to change a bag, you remove the whole thing and attach a new one.
Two-piece bags mean that you don’t need to change everything each time. The adhesive part remains on the skin, and you just unclip the bag when it needs changing. You can then clip on a new bag.
Closed stoma bags are used by people with colostomies who have more solid stool. They need to be changed whenever they are full – perhaps one to three times a day.
Drainable stoma bags are often used by people who have had ileostomies, or people with colostomies who have softer or looser stool. These bags have a drainable opening at the bottom. This means they can be emptied into the toilet when they are full. You don't need to change the bag each time it's emptied.
Urostomy bags collect urine. They usually have a tap at the bottom to drain urine into the toilet. Your client or loved one may need to use a larger bag or drainage system at night.
If you’ve never seen a stoma before, you might be concerned about caring for someone with one. Your client or loved one will have a stoma nurse or medical team who can offer advice or answer questions as they come up.
If you are a family caregiver and you’re worried about providing stoma care, you could arrange personal care for your loved one with a private carer or a care agency.
If your client or loved one is new to having a stoma, the stoma nurse will show them (and you, if possible) how to do it before leaving hospital.
Depending on the type of stoma, the bag may not need to be completely changed every time – sometimes it can just be emptied. However, when you need to fully change the bag, you should:
Immediately after surgery, there may be strict dietary restrictions. If your client or loved one has a colostomy or ileostomy, they may be advised to eat a low-fibre diet for the first few weeks.
As time goes on, their diet may be able to return to normal. Some people will still need to restrict some foods, including fizzy drinks or food with tough skins such as corn, because these might lead to excess gas or blockages.
Some people with stomas develop a vitamin B12 deficiency. They should try and eat foods that are high in B12, such as meat, milk and dairy. If your client or loved one follows a vegetarian or vegan diet, they could include fortified plant-based milks and nutritional yeast in their diet, if possible, as well as supplements.
Your client or loved one’s medical team may have specific dietary advice for them. You should encourage them to follow this advice.
Caring for someone with a stoma will largely depend on their other personal care needs. They may need more support if they have just had stoma surgery. Equally, if they have dementia or significant mobility difficulties, they are likely to need more help from you.
You may be concerned about supporting someone to wash if they have a stoma. However, people with stomas can still bathe or shower normally, although they may find that some products irritate the skin around the stoma. Your client or loved one may prefer to bathe or shower with their bag on or off.
Some people with stoma bags need extra support with skincare. If urine or stools come into contact with the skin, this can lead to it feeling sore and inflamed. Some people may find that the adhesive irritates their skin. If this is the case, they may need to use a barrier cream, or ask their stoma nurse for advice.
Most people with a stoma are able to continue exercising as they did before their operation, once they have recovered from surgery.
While recovering, most patients are encouraged to do some gentle exercise. You can help with moving around and walking. In the recovery period, take advice from their medical team about what exercise is right for them.
Once they have recovered, you can support them with any exercise that they enjoyed before their surgery. Stoma bags are waterproof, so swimming is a great exercise choice. People with stomas do all kinds of exercise, including hiking, running and even rugby!
Before surgery, your client or loved one may have spoken with their stoma nurse about the changes that will come with a stoma. However, a stoma might be done in an emergency, for example due to sudden trauma. If this happens, it may take a little while to adjust.
Lots of people feel relieved once the surgery is done, especially if they had very severe symptoms beforeand. For many people, having a stoma can improve their lives greatly.
Some people feel anxious about leaks, especially overnight, which means that they don’t always sleep well. You can help your client or loved one with sleeping positions that avoid putting pressure on the stoma bag. Some people, especially those with urostomies, use a larger bag at night. Others find that changing their food routine helps – if they eat their larger meal at lunchtime, they are less likely to have as much output during the night.
If your client or loved one is struggling with their mental health, encourage them to talk to a professional. Their stoma nurse may be able to recommend local support groups.
There could also be physical reasons for low mood and anxiety. People with stomas may struggle to absorb some vitamins and minerals, such as vitamin B12, which can lead to symptoms including depression.
Stoma care can be an important part of being a family carer, depending on your loved one’s condition. Having a stoma can be life-saving for many people. However, looking after someone’s stoma can still be hard work, especially if it’s on top of other personal care.
If you need support with providing personal care for someone with a stoma, contact the team at Tiggo Care today.
We know that the costs of finding good care can add up. We’ve put together a guide to care funding options, and remember that if your loved one’s stoma is permanent, they should qualify for free prescription supplies, even if they’re under 60. If the stoma is temporary, they may still qualify for free prescriptions if they have cancer.
Yes, home carers can change stoma bags. Carers who are providing stoma care for a client will manage the changing, emptying and hygiene related to the stoma. This may include skincare and bathing.
You can shower or have a bath with a stoma. Some people remove their bag to shower or bathe, whereas others prefer to leave theirs on. The bags are waterproof. If you want to remove your stoma bag to shower or bathe, you might prefer to plan your baths or showers for a time when you are less likely to have any stoma output, if possible.
Stoma bags should be emptied or changed regularly. How long they can be left depends on the type of bag, the type of stoma, and the amount of stools or urine your body produces. If you have a closed bag system, after a colostomy, it should be changed after every movement. If it’s a drainable bag, it should be emptied when necessary, and changed every few days – some people find that they need to change theirs every two days, whereas others may be able to wait longer.
After they have recovered from surgery, most people with a stoma can eat and drink normally. It’s often advised to avoid too many foods or drinks that could cause a gas build up, such as fizzy drinks. Some people may also need to avoid foods that are too fibrous or which have tough skins, such as corn, so that they don’t end up with a blockage in their stoma.
Get in touch with Tiggo Care today to see how we can help you or your loved one.