Apart from the subject of sensible eating habits, there is probably only one subject that has attracted more hoary old wives tales, myths and fallacies surrounding it and that is travel following ileostomy surgery.
It is only natural to be a little apprehensive about travelling once you have had ileostomy surgery but much of the apprehension is a hangover from the memories of trying to travel during the bad old days. This is when you were suffering from an attack of inflammatory bowel disease (IBD), such as ulcerative colitis or Crohn’s disease, which your surgery was designed to relieve.
We all remember that when we had active IBD we used to know the location of every toilet on our routes and that being out of reach of a toilet seemed to increase the need to go!
But we tend to forget that we didn’t worry in this way before we first had an attack of IBD. People with normally-functioning bowels don’t get preoccupied by the availability of toilet facilities yet they also need to empty their bowels or bladder while travelling. IA members have happily travelled to all parts of the globe and this leaflet includes many of their tips, covering the four main methods of transport – road, rail, boat and plane – both in this country and abroad.
Let’s cover the few precautions that it is sensible for everyone to observe.
In the early days after surgery, it makes sense to start with short trips away from home while you build up confidence again. Once you are happy that your ileostomy equipment stays securely in place during normal day-to-day activities and these short trips, you can venture further afield. The world is your oyster.
Many IA members find that a complete change of their ileostomy equipment just before departure on a trip gives them maximum security from the possibility of leaks.
Stoma care nurses will help you choose the most suitable type of equipment for your lifestyle, including travel possibilities.
Change of water, climate or food can upset anyone’s bowels – we’ve all heard of Travellers Trots or Montezumas Revenge – and the holiday pages of newspapers often feature advertisements for remedies for diarrhoea.
Although many IA members’ families seem to be more prone to this (perhaps because the bug acts mainly in the colon) than the members, it is wise for someone with an ileostomy to be prepared because acute diarrhoea could lead to dehydration through loss of fluid and electrolytes such as sodium and potassium.
You can obtain Imodium, without a prescription, over the counter of your local chemist. If you take this at the first sign of diarrhoea, you can usually nip it in the bud. People with ileostomies are always recommended to drink more fluid (preferably water) each day than someone who still has a colon and this is particularly important in hot climates. If you don’t trust the local water, you can buy bottled water – still or slightly sparkling – or you can boil water and drink it when it has cooled (but don’t store it for too long before drinking).
It is wise for everyone to avoid ice cubes or foods washed in local water, if the local water supply is suspect, and remember that too much alcohol will accelerate dehydration (as well as giving you as big a hangover as the rest of your family!). Coffee is also a diuretic and can deplete reserves in your body.
Despite press reports about the dangers of too much salt with our food, anyone with an ileostomy can add up to one extra teaspoonful of salt per day to his/her diet (unless advised otherwise by their GP) because this is the average amount of salt lost per day through a normal functioning ileostomy.
Adequate supplies of spare ileostomy equipment should be taken on holiday and long trips. Some people suggest taking twice the amount you would normally use, but this is up to you. What is more important than the amount is first making sure that you don’t forget anything, and second making sure your supplies don’t get lost in transit. Make yourself a reminder list of everything you use for a normal change (bags, flanges, skin protective wipes, filters, disposal bags and so on) and use it as a check list when you pack.
When travelling by air, be sure to check the restrictions on carrying liquids and sharp instruments in your hand luggage. You will need to ensure that your bags are cut to size as scissors are definitely not allowed in cabin baggage. Try to have a supply of equipment in both your hand and hold luggage – remember that your hand luggage can also go astray.
A travel certificate is available from IA national office, which will help when going through customs. You can also make special arrangements to take extra supplies. If flying check with your airline when booking, as you may have to pay if your baggage exceeds the allowance limit.
Remember to observe the manufacturers’ guidelines for storage of ostomy equipment, especially in hot climates; often the bathroom is the coolest place. Or, if you are able to take a food cooler box or bag with you, you can use this to store your supplies at a suitable temperature.
Nowadays, most hotels have en-suite toilets, because most peoples (with or without ileostomies) prefer the convenience and do not relish joining a queue for the loo at the end of the corridor! With an en-suite toilet/bathroom, you obviously have a better opportunity to empty or change your ileostomy bag at a time to suit you. You can usually dispose of old bags in the sanitary bins found in most hotel toilets. Many ostomy equipment manufacturers/suppliers, who advertise in the Journal, offer self-seal polythene disposal envelopes in which to wrap used bags.
Travel insurance is a must if travelling abroad as it covers loss of luggage and money as well as cancellation of holidays. Many people are taking out insurance even for holidays in the UK for the same reasons. However, it is vital to ensure that your policy does not exclude pre-existing conditions, i.e. any medical condition which existed before the date of effecting the policy. An ileostomy or internal pouch is a pre-existing condition and, if you are in any doubt whether or not it is covered by your policy, you will need to check with the company issuing the policy at the outset.
Remember to check whether the country you are visiting has reciprocal arrangements with our own NHS – your local Department of Social Security office (DSS) or Post Office will be able to give you full details regarding the European Health Insurance Card (EHIC) forms.
Many people enjoy swimming on holiday and there’s no real reason why someone with an ileostomy should not also be “in the swim”. If you haven’t yet taken the plunge, then you probably have one of the two standard worries – that your bag will show under your swimsuit, or that it will come off in the water.
First, the swimsuit… Depending on the size and position of your stoma, you may well have no problem in finding a suitable swimsuit in the shops. Alternatively, there are a number of companies who make swimsuits that are specifically designed for people with ostomies. There is nothing peculiar-looking about these swimsuits. The designers have simply thought about stomas and cut men’s trunks a little higher in the waist or placed a bow or some ruching or a similar feature in a strategic position on women’s suits. Some suits have an elasticated lining with a built in stoma pocket.
Next, the bag… Most modern lightweight bags already have microporous adhesive support collars around the flanges. If your particular brand doesn’t, you may want to picture-frame the edges of the flange with microporous tape for extra security. One of the big advantages of this type of adhesive is that it seems to cling even closer to the skin when it has been wetted and dried.
Don’t forget that bags come in different sizes. If your everyday bag is a little too long under your swimsuit, try one of the mini-bags, or simply roll your usual bag into a smaller shape and tape it to your skin. Make sure that the bag is empty and flat before you slide into your swimsuit, then forget it, and have fun in the water.
Now let’s deal with queries about specific forms of transport.
Road. In a car you can stop when you want to (or when someone else in the car needs to go to the toilet). There are usually adequate numbers of cubicles at motorway service areas. Fortunately many restaurants and takeaway food stores have toilets and you can often use these. Many coaches now have toilets on board with just about enough room to empty a bag.
Remember not to leave your ostomy equipment in the car boot in hot weather, as this is the hottest place in the car.
Rail. Apart from some local trains there are usually toilets on board – but you need a good sense of balance on a 125mph express!
Sea. There are usually adequate toilets on board ship except for short distance boats.
Air. When flying remember to empty your bag in the departure lounge toilets whilst you are waiting to board your plane. Long-haul flights usually present no problem, but it is human nature for there to be a queue for the toilets after meals, so beat the rush; go before the meal! Short-haul planes are another matter because there are often only two toilets, perhaps at the back of the plane and it is difficult to get down the gangway past the food trolley or the duty-free trolley! There is room to empty a bag in an aircraft’s toilet and they are air-conditioned.
Do remember that IATA regulations forbid passengers to take dangerous items on board which could cause a flash fire. It is the passenger’s responsibility, if in doubt, to check with the airline, although a pharmacist or ostomy equipment supplier can usually tell you if any of the items you use are on the prohibited list.
The change of air pressure on aircraft affects everyone (in fact people may get colic pains from wind in their intestines) and you may experience more gas in your bag. You can minimise this by avoiding gassy drinks and by eating regularly, as you are more likely to get gas from an empty stomach than a full one (although you may prefer to eat a low-fibre meal before boarding the plane to reduce the bulk of any bowel motion while in flight).
You may prefer to wear a two-piece ileostomy system which allows you to burp out any excess gas without having to open the drain clip on the bag or to add a flatus filter, even if you do not usually use one.
In conclusion, it is hoped that all of the main points have been covered and as a result, you will now be able to relax and enjoy your holiday.
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