How to maintain a normal, independent lifestyle either at home or out and about
There are various aspects of a stoma which can make daily life challenging. Here we tackle some of these with advice and techniques to help you ignore your stoma and just get on with the business of living your best life.
Top tips for stoma management while you’re on holiday
Changing appliances is not too difficult but follow some basic rules and you are much less likely to get any troublesome leaks.
- Try and get into a routine and pick a time when you will be free from disruptions but if your pouch is leaking then change it as soon as you can
- Hygiene is very important so always wash your hands thoroughly before you start
- Choose an area which you can protect from accidental spillages and get everything ready and to hand before you start including cutting the pouch or flange to size.
- Making a template to reflect the size of the stoma is really useful
Some wind or flatulence is inevitable whether you have a stoma or not but because the stoma bag can inflate, wind can be a very distressing and embarrassing issue for those with a stoma. Try to modify your diet so that foods which tend to create wind like pulses are either avoided or only eaten in small quantities.
Modern stoma pouches contain an integrated filter which helps control the release of wind and avoids the embarrassment of the pouch inflating. The filters are charcoal-based which is a natural odour neutraliser. Did you know you can also add a couple of drops of peppermint essence into the stoma bag to help reduce odours?
Normal daily life with a stoma
With adaptations, there is no reason why normal daily life – housework and gardening even sport – cannot carry on with some modifications.
- Gardening – the key is to avoid lifting anything too heavy so using lightweight equipment and small trugs and barrows which have to be emptied more frequently because they accommodate less. Some stoma patients redesign their garden so there is less bending over – if you do need to bend, you should bend from the knees. Raised flower beds and borders make the task of gardening much easier and give you an opportunity to create a fresh look for your home
- Housework – upright vacuum cleaners can be quite a strain but this can be alleviated by using both hands, modern versions like the Dyson range are much lighter and easier to use. Vacuum cleaners are heavy to carry up and downstairs so have two cleaners, one for upstairs and one for downstairs. Half fill your kettle or use a travel kettle which is smaller. A laundry basket on a collapsible trolley is ideal for linen which can be really heavy
- Showering and bathing- are all perfectly possible with a stoma appliance although it is preferable not to aim the direct flow of water from a shower right onto the pouch. You may need to change the pouch more often because of showering and bathing if you wash with the appliance in place. Always ensure the soap is well rinsed from your skin as it leaves a film which can make it harder to ensure the stoma bag stays in place via the adhesive
- Sporting activity – even contact sports are all perfectly possible with a stoma although always allow sufficient time to recover after surgery and speak to your stoma nurse or GP and discuss your intentions with them first
Travelling with a stoma
For many stoma patients, this is the biggest challenge but with careful thought and planning, a stoma does not have to restrict your holiday plans. These hints and tips will help guide you through holiday preparations and travel to the resort and ensure you have an enjoyable trip.
Before you go
- Plan your accommodation carefully – do you want a bathroom or a shower? You may prefer to shower but bathrooms tend to be bigger with more room if you like to change your appliance in there
- Plan your daily routine and think about when you will empty the pouch or change the stoma appliance. Pouches are best emptied when they are half or two thirds full but the restrictions of travel schedules and unexpected delays may make access to a quiet, private and hygienic location more difficult. Try and plan your stoma pouch changes so that you stay ahead of how full it is then you won’t get caught out if there are unexpected delays. Some people prefer to use a drainable pouch whilst they are travelling which removes the challenge of changing a pouch in often cramped toilets i.e. on an aeroplane. Remember that a different climate and diet can alter the normal pattern of your bodily functions and you may need to change the stoma pouch more frequently than if you were at home
- Calculate the equipment you will need for the length of your trip including some spares in case of difficulty or occasional faulty supplies and whether you intend to use night drainage bags. Use products from different batches and with different batch numbers to help reduce the likelihood of faulty supplies
- Pack your main supplies in clear plastic bags so they are easy to identify if your luggage is checked at security and they will also take up less space if you discard the packaging
- Update your stoma template before you travel and pre-cut some pouches ready to size
A few golden rules may help:
After surgery, ostomates worry about their diet, but eventually, they realise that there are very few restrictions as to what they can and cannot eat. Dietary requirements are a very individual matter and will depend on an ostomate’s own body. Everyone is unique – different foods and drinks may disagree with one person but may have no effects on someone else.
However, like everyone else, an ostomate should eat a varied, well-balanced diet with plenty of fruit and vegetables, and take regular exercise.
A stoma should not change your enjoyment of food. The most important dietary concerns for ostomates are preventing blockage, and avoiding foods that produce unpleasant odours, gas or excess stool. However, many stoma patients eat a very varied diet, which is important, leaving out the foods which upset them as individuals.
Controlling weight is always important, so it is beneficial not to overeat.
The following are tips about a few common foods to avoid. However, if there are any dietary concerns, a doctor or nurse should be consulted.
- Eat at regular times in a relaxed atmosphere. Eat small, sensible portions, and eat little and often. A stoma works best if three or four regular meals are eaten each day.
- It is always better to sit down to eat. Never grab snacks, eat standing up or in a hurry.
- Chew food thoroughly, especially if you have an ileostomy, as this will help to prevent any food blockage.
- Eat slowly and try not to gulp in air when eating.
- Try new foods, one at a time, in small quantities. Therefore, if there is a problem, you will have an idea what caused it. Then just eliminate that particular food for a while, and then try again.
- Drink plenty of fluids daily, (6-8 glasses/mugs), especially in hot weather, as fluids may be lost more than normal through a stoma.
- Take care when eating some foods, because they are not completely digestible and could cause a blockage. Such foods are celery, Chinese vegetables, coconut, coleslaw, mushrooms, nuts, peas, popcorn, raisins and other dried fruits, raw pineapple, relish, salad greens, seeds and vegetable skins.
- Avoid food that has been standing for a long period of time, especially when abroad on holiday in hot climates.
- Natural yoghurt can help to neutralise the bacteria in the gut, and therefore, reduce excessive wind.
Travelling to the resort and trips out whilst you are away
- When you are travelling, you may be happy to keep the bulk of your supplies in your main luggage but always keep a small travel kit in your hand luggage in case of lengthy delays which may require a pouch change while you are travelling. Scissors cannot travel in hand luggage, they can only go in suitcases intended for the aircraft hold
- Check with the airport about the regulations for carrying gels, liquids and aerosols in hand luggage as these rules do change from time to time. Take note of how these items must be packed, usually in a transparent plastic bag so they are easily inspected at security and maximum permitted volumes
- Some airlines offer a special baggage allowance for people carrying medical supplies, an extra 5kg but each airline does vary so check before you fly
- People with a stoma should avoid heavy lifting so you may need assistance with lifting and carrying your luggage. Taxi drivers will usually help you and airports and railway stations have trolleys but you should plan your journey in detail, for example, many tube stations have flights of stairs which can be challenging with heavy suitcases. Transport for London has a really good website which allows you to plan your journey with plenty of information for those who need level access and want to avoid stairs. With some adjustment to your route, it is possible to get from tube to street level without the need to lug heavy luggage up flights of stairs if you are on your own
- Some stoma patients are at increased risk of Urinary Tract Infections so make sure you stay well hydrated during your journey with bottled water. Cranberry juice is also helpful in keeping infection at bay and this can be taken in tablet form which is much easier if you are travelling. Sports drinks can be a useful source of salts and sugars. Avoid alcohol if you are on a long trip as this increases dehydration
- Flying at altitude can increase the occurrence of wind so avoid eating anything in the preceding 24 hour period which could exacerbate this
- Keep a list in your hand luggage or in your wallet which details all the prescription medicines you are taking and also contains information about the stoma in case you have to explain your medical supplies at border security checks
- Seatbelts in cars or coaches can become uncomfortable if they are situated on top of the stoma. Car accessories shops sell a number of different products which help make seatbelts more comfortable and protect the stoma or you could wear a stoma protector such as Ostoshield
- Consider carrying a toilet card which is a handy credit card size and details that you have a medical condition and may not be able to wait in a queue. It is also a very useful device if you are in a location where there are no public toilets and you have to request to use a private toilet. Remember, you are entitled to use a disabled toilet if you have a stoma even though the image depicts someone in a wheelchair. Disabled toilets are often much larger with more room making it easier to drain or change an appliance
In the hotel
- Think about where you will store your equipment – it needs to be kept in a cool, dry location, fine if you are in a hotel room but much more challenging if you are camping in a hot location
- Disposal of used appliances and associated waste can usually be done in the standard bathroom bin, just make sure you double bag everything. Some hotels will provide medical waste bags which are yellow. Flushable pouches should be fine for hotel toilets but should not be disposed of down the toilet if you are on board ship
- Use only bottled water to clean the stoma which can be boiled and cooled
- Some stoma patients take a mattress protector with them to avoid any embarrassing marks or stains due to leakage
- A night drainage bag stand is incredibly useful and you can buy a flat-pack travel version which is light and easily folds to fit into your luggage
- Have a healthcare phrase card in your wallet or download a language app to your phone which you can use to translate key medical sentences
- Keep details of your medical supplier in your wallet as some companies will provide delivery of supplies overseas if you run out; this is something you can check out before you travel
- If you lose your supplies, say your luggage is sent to the wrong airport, there is an organisation called World Assist Alliance which is an internationally operating network of delivery companies who may be able to help you in an emergency. The service is available in some (not all) European countries and beyond and you won’t need a medical prescription to access fresh supplies.
Always discuss your travel plans with your healthcare professional be that stoma care nurse or your GP. They can advise you of any other considerations that you might not have thought of before you travel. The International Ostomy Association may be able to help provide details of organisations that can supply stoma products in your destination country- check this website out before you go.
Post Brexit, the European Health Insurance Card will continue to be valid during the transitionary phase which ends on 31st December 2020. Further information about what will happen from 2021 onwards will become available from government agencies and healthcare professionals. Even with an EHIC card in place, you should still purchase travel insurance as there are many aspects of your care and medical needs which may not be covered by the healthcare system in place in your destination country. If you have any issues with your stoma whilst abroad and require medical treatment or hospitalisation then the EHIC may not cover this.
Some travel insurance policies will cover a stoma whilst others do not (read our guide to colostomy travel insurance here). It is crucial to disclose all your medical conditions to the insurer and remember to update them if you buy cover several months before you travel as your health status may have changed during the intervening period.
Did you know?
Patients in the UK who have a permanent stoma are entitled to free NHS prescriptions. You may already be eligible for free prescriptions for other reasons but if you are not, your local GP surgery can direct you to the relevant NHS Medical Exemption Form. Your stoma care nurse or local hospital can also provide this form. The form will need a doctor’s signature to confirm that the information is correct and that the stoma is permanent.
Once the relevant department has received the form and it is processed, you will receive a white card around credit card size so easy to fit in your wallet or purse which confirms your entitlement. The card will have an expiry date on it which is usually five years from the date of approval or the patient’s 60th birthday if that is sooner. You will receive a letter from the NHS about one month before your current card is due to expire if you remain under 60 asking you to apply for a new one. Keep the card in your wallet as you will be asked to provide proof of your exemption from prescription charges whenever you go to collect medication.
Surplus to requirements
If you find you have excess medical supplies that are unopened and unused, you can put these to good use. There are a number of charities who may be interested in having these donated but always contact them first before you send anything. No-one wants to have a stoma but imagine how much worse it would be if you didn’t have access to sterile medical supplies and professional healthcare.
If you just simply want to dispose of partially or wholly unused medical supplies and products then your stoma nurse or local pharmacist can usually help with that.
Coming to terms and living with a stoma
There are some tried and tested techniques, everyone is an individual and what works for one person may not work for another.
- Naming your stoma
- Networking with other Ostomates on Facebook and Twitter which provide discrete online access to designated support groups and associations like Stoma Stifler, The Colostomy Association, Peak Medical Ltd and Pelican Healthcare Ltd. It is a chance to learn about the latest developments in stoma care and also connect with other people who share the same experience. This can be both informative and supportive and decrease the sense of difference and isolation that some stoma patients feel. YouTube is also a good source of practical information as sometimes the medium of film can better explain something that simple text alone struggles with like changing an appliance
- Support groups and organisations like Colostomy UK can help with all aspects of stoma management and support those with either a permanent or temporary stoma who often feel isolated. There is bucket loads of good practical advice and support from others in the same situation
With care, planning and just a little forethought, it is possible to manage a stoma and get on with your daily life, enjoying all the normal activities that you did before including sporting activities and holidays.
Further reading: inspiration and resources for living with a stoma
Reading and writing blogs are a way in which ostomates can come to terms with their stomas and life with a stoma. Blogs are worldwide and are written by many truly-inspirational ostomates, who are living life to the full. Here are some of the best to get you started:
IBD Baggage Claim: https://ibdbaggage.com/about/blog-posts/
Ostomy Canada Society: https://www.ostomycanada.ca/blog/
Uncover Ostomy: http://uncoverostomy.org/blog/
Living Bigger With Colostomy: http://www.livingbiggerwithcolostomy.com/
The Ostomy Factor: https://joannltremblay.wordpress.com/
Vegan Ostomy: https://www.veganostomy.ca/
Ostomy Support Charity Stomawise: http://www.stomawise.co.uk/
National Association for Colitis and Crohn’s Disease: http://www.nacc.org.uk/
IBS Network: http://www.ibsnetwork.org.uk/
The Big Stoma Bucket List: https://adventuresofthebaglady.wordpress.com/
Colostomy Association: http://www.colostomyuk.org/
Gladrags & Bags: http://www.gladragsandbags.org/blog/
MS-UK MS Forum: https://www.ms-uk.org/
Ostomy Champagne Lifestyle: https://ostomychampagnelifestyle.com/
The Spoonie Mummy: https://thespooniemummy.com/
Pelican Healthcare: https://www.pelicanhealthcare.co.uk/blog/
Rocking 2 Stomas: https://rocking2stomas.co.uk/
Tomas The Stoma: https://tomasthestoma.co.uk/
Active Ostomates: https://activeostomates.wordpress.com/
Chronies Unite: https://unitedcrohnies.wordpress.com/
The Great Bowel Movement: https://thegreatbowelmovement.org/
The Gutless Cyclist: http://gutlesscyclist.blogspot.com/
Ostomy Outdoors: https://ostomyoutdoors.com/
Life, Lemons and Lemonade: http://lifelemonsandlemonade.com/