Whether you are due to have stoma surgery, have recently had stoma surgery or have been living with a stoma for a while, adjusting to life with a stoma can be tricky. Everyday activities can become stressful and it can feel overwhelming to try and plan things like days out or holidays.
However, it is very possible to be fulfilled and happy when living with a stoma. In this guide, we will address some common questions about living with a stoma and provide guidance for managing a stoma. Click below to jump to a section of the guide:
- Can you live a normal life with a stoma?
- What can’t you do with a stoma?
- Returning to work with a stoma
- Can you eat normally with a stoma?
- What can’t you eat with a stoma?
- Can you drink alcohol with a stoma?
- Everyday activities with a stoma
- How do you sleep with a stoma bag?
- Can you shower with a stoma bag?
- What can you wear with a stoma bag?
- Travelling with a stoma
- How to stay active with a stoma
- Sex and relationships advice with a stoma
- Having sex when you have a stoma
- Living with a stoma resources
Can you live a normal life with a stoma?
Following recovery from stoma surgery and an adjustment period, most people find they can resume their normal day-to-day activities and get back to doing things they love. Your stoma nurse will advise you on the time period for this, but it is likely to be around 8 weeks. It’s normal to struggle at first and have bad days, but by taking proactive steps, life with a stoma bag doesn’t have to be difficult.
Everyone is different, and so is their idea of ‘normal’. The amount of time it takes to get used to living with a stoma will change from person to person, so you must ask your stoma nurse any questions and address any issues sooner rather than later.
You are more likely to live a full life with your stoma if you use the correct products to make managing your stoma easier – such as a bag that properly fits and accessories that suit your lifestyle. For example, you can get ostomy products to reduce leakage such as stoma seals and protective skin barriers. Ask your stoma nurse about these.
There are many resources available to help you get back to living a normal life with a stoma, including a bank of information online written by medical professionals and fellow ostomates. We have listed some of our favourite stoma resources at the end of this article (click here to skip to them).
What can’t you do with a stoma?
There aren’t many things you can’t do with a stoma! Of course, this will vary from person to person, depending on your lifestyle, health and confidence. Speak to your stoma nurse if you are unsure or need support getting back to your normal activities.
Even things like contact sports are possible with the right preparation.
One of the only things that ostomates seem to agree on is that you cannot sleep on your stomach with an ostomy.
Returning to work with a stoma
Once you have fully recovered from stoma surgery, you should be able to return to work (or education). The time frame for this depends on your health, the type of operation you had and your job. Your doctor will tell you when you are fit enough to go back to work and advise you about adjustments you may need. For instance, if your job consists of any heavy lifting or strenuous activities, you might need a phased return to work and the doctor may suggest that you wear a support garment.
Your doctor can also talk with your employer’s HR or occupational health department, but it’s up to you whether you want to disclose that you have a stoma to your employer. If you do disclose it, they are better placed to support you, for example with flexible working arrangements, making toilets stoma-friendly and generally being understanding about your life with a stoma. It might be possible to return to work part-time and gradually build your working hours.
Can you eat normally with a stoma?
Yes, you can eat normally with a stoma. The first 2-4 weeks after stoma surgery, you may have a reduced appetite, so try to eat little and often. Eating bland, soft or low-fibre food will help your digestive system recover.
However, you don’t have to have a boring diet because you have a stoma. Your stoma nurse or doctor will advise you when you should start eating ‘normally’ again. Like anyone, you need to maintain a healthy balanced diet.
What can’t you eat with a stoma?
There are no rules over what ostomates should and shouldn’t eat, but you may want to avoid certain foods that are difficult to digest such as raw fruit and vegetable skins, corn or nuts. Some people with stomas report that certain food causes wind and ballooning, such as onions, chillies, beans and cabbage.
Stoma behaviour varies from person to person, so it is a good idea to keep note of when and what you eat so that if you encounter any stoma problems, you can more easily tell what may have caused it. It will take trial and error to notice patterns.
Can you drink alcohol with a stoma?
You can drink alcohol with a stoma if you want to. Remember that alcohol causes dehydration, so be sure to drink lots of water. Be aware that beer and lager are known to make output more liquid. Carbonated drinks in general can cause gas which may lead to ballooning.
Just like before stoma surgery, you may experience a hangover, so don’t overdo it!
Everyday activities with a stoma
Simple day-to-day activities can be confusing to navigate when you’re living with a stoma – such as sleeping, showering and choosing what to wear. However, they shouldn’t be difficult.
How do you sleep with a stoma bag?
Some people with a stoma find that stoma bag issues (such as leakages) at night or anxiety about their stoma can disrupt their sleep. There are simple steps you can take to improve your sleep with a stoma:
- Change/empty your stoma bag before bed
- Make sure your stoma bag is secure – for example by using a seal
- Keep spare pyjamas, bed sheets and stoma supplies like bags and medical adhesive remover near your bed
- Use a waterproof mattress cover and/or an incontinence sheet or puppy pad
- Use dark sheets to help disguise any stains so that you don’t have to throw your bedding away
- Plan when you eat to avoid a large meal close to bedtime
- Use a body pillow to keep a suitable sleeping position
- Use a high-output bag for nighttime if needed
- Speak to your stoma nurse about over-the-counter treatments to slow down your stoma output overnight
Can you shower with a stoma bag?
Stoma bags are waterproof so it is personal preference whether you shower or bath with a stoma bag on or off. Air and water won’t get into the stoma.
Colostomies tend to be less active and more predictable so it may be easier to time your shower so that you don’t need to wear the pouch – such as before breakfast. Ileostomies and urostomies are more active, so you may prefer to wear a bag. Ultimately, you know your stoma best, so you should decide based on its behaviour and your preferences.
You should protect the filter with a filter cover if you shower with your stoma bag, as water can stop it from functioning properly.
If removing the pouch, try not to use oil-based, perfumed or glittery products as they could leave residue which affects the adhesion of your next bag. There’s no need to rub the stoma or surrounding skin, but make sure you dry it gently and thoroughly. Read more: Peristomal skin protection
What can you wear with a stoma bag?
You can wear clothing that suits your personal style with a stoma. You just need to make sure that waistbands or belts are not worn over the stoma or restrict the bag too much. Some ostomates prefer high-waisted pants for this reason.
Clothing specially designed for ostomates is available to buy, but this isn’t a necessity. The clothes you wore before stoma surgery are likely to be fine. If you do want to buy new, there’s no reason why you can’t go shopping in your usual favourite clothes shops.
Travelling with a stoma
Although it can be nerve-wracking, having a stoma shouldn’t stop you from travelling, even abroad. You may want to begin with short trips not too far from home to build your confidence. You should check with your doctor or stoma nurse before air travel if you’ve recently had surgery.
Here are some tips and tricks for travelling with a stoma:
- Go through your bag change routine and make a list of everything you use.
- Calculate how many bags and other supplies you will need each day you are away and pack plenty of extras, including different bag sizes.
- Take a few drainable bags with you, even if you normally use a closed bag. They are useful in case of tummy upsets because they can be emptied regularly.
- If flying, keep your stoma supplies in your hand luggage so it is not lost and restricted items (such as scissors and sprays) can go through security with you.
- Keep your stoma supplies in a dedicated, easy-to-carry bag for quick and easy changes.
- You may want to download a travel certificate in the local language to explain your condition.
- For travelling in the UK, you can use a radar key to easily access disabled toilets.
Read more: Travel advice from Colostomy UK
How to stay active with a stoma
Once you have recovered from stoma surgery, it’s important to stay active to keep your body in good condition and boost your overall health.
When recovering from surgery, try going for light walks or engaging in gentle home exercises as outlined in this Colostomy UK resource. Slowly, you can begin to increase your activity, including running, pilates, swimming and cycling (if you have a perineal wound, avoid cycling until it has healed). Listen to your body and don’t push yourself too far too soon; if you experience pain, stop.
Ostomates are at risk of parastomal hernias due to weakened abdominal muscles after surgery. This means that it’s important for you to avoid heavy lifting for the first 3 months after surgery and gradually develop your abdominal strength. Maintaining good posture, eating healthily and doing abdominal exercises can reduce this risk, as well as wearing support belts during physical activity.
You’ll likely be able to continue playing sports once you have adjusted to life with a stoma. Check with your doctor or stoma nurse first, who will be able to advise you on any accessories you may need, such as a stoma protector. This will help you avoid injuring your stoma in sports where you could be hit in the abdomen.
Sex and relationships advice with a stoma
Having a stoma shouldn’t have a negative effect on your romantic or sexual relationships, but it is normal to feel apprehensive about broaching the topic with loved ones. They may also be anxious – so an open dialogue is very important to help both of you understand how to navigate life with a stoma. It might help to send them this article: How to support your partner with a stoma
You might feel insecure about the changes to your body. This is normal. Be honest about any feelings with your partner who will be able to reassure you and support you emotionally.
It’s up to you and your partner to decide how involved they are with your stoma management. They may be able to attend appointments with your stoma nurse so they can understand your surgery and how they can help you adjust to life with a stoma. They can help you with bag changes if you need it, but they can also support you in very simple ways such as carrying extra bag change supplies.
It’s up to you when (or if) you disclose your stoma to a new partner. Some people find it easier to ‘break the ice’ and get it out in the open as soon as possible whereas others prefer to keep it discreet. There’s no right or wrong answer.
Having sex when you have a stoma
Give yourself time to recover from surgery before being intimate – take as long as you need. The most important thing is that you are relaxed and happy. Sexual positions you enjoyed before may no longer be comfortable, so be open to talking about this with your partner and exploring different ones.
You don’t need to wear a special type of stoma bag to have sex. You might want to change the bag before to give you peace of mind that it won’t overfill or wear a smaller bag to be more discreet. Support bands can help to conceal and support the bag.
Sometimes, stoma surgery can affect the nerve endings and blood supply to the penis, resulting in erectile dysfunction. Read more from a stoma nurse here.
It is possible to get pregnant when you have a stoma. Speak to your stoma nurse about contraception.
Living with a stoma resources
There are challenges of living with a stoma but it shouldn’t stop you from being happy and doing everyday activities and things you enjoy. If it is, talk to your stoma nurse who will provide advice and products to improve your quality of life. We also recommend exploring resources and support groups created by organisations like:
Ileostomy and Internal Pouch Association
Further reading
NHS: Colostomy and ileostomy information
Cancer Research UK: Urostomy information
If you are a medical professional and are interested in finding out more about how StoCare products can help your patients or requesting a repeat sample order, please email info@rhodespharma.co.uk.
This information is for guidance and does not replace advice given by your healthcare professional.
